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3. Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

Author

Medical Humanities Onderzoek Team 1, Regenerative Medicine and Stem Cells, JC onderzoeksprogramma Methodology, Healthcare Innovation & Evaluation, Neurologen, Palliatieve Zorg, Cancer, Child Health, Pollock, K., Bulli, F., Caswell, G., Kodba-Čeh, H., Lunder, U., Miccinesi, G., Seymour, J., Toccafondi, A., van Delden, J. J.M., Zwakman, M., Rietjens, J., van der Heide, A., Kars, M., Medical Humanities Onderzoek Team 1, Regenerative Medicine and Stem Cells, JC onderzoeksprogramma Methodology, Healthcare Innovation & Evaluation, Neurologen, Palliatieve Zorg, Cancer, Child Health, Pollock, K., Bulli, F., Caswell, G., Kodba-Čeh, H., Lunder, U., Miccinesi, G., Seymour, J., Toccafondi, A., van Delden, J. J.M., Zwakman, M., Rietjens, J., van der Heide, A., and Kars, M.

Published
2024

4. Patient and family caregiver perspectives of Advance Care Planning:qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

Author

Pollocka, K., Bulli, F., Caswel, G., Kodba-Ceh, H., Lunder, U., Miccinesi, G., Seymour, J., Toccafondi, A., van Delden, J. J. M., Zwakman, M., Rietjens, J., van der Heide, A., Pollocka, K., Bulli, F., Caswel, G., Kodba-Ceh, H., Lunder, U., Miccinesi, G., Seymour, J., Toccafondi, A., van Delden, J. J. M., Zwakman, M., Rietjens, J., and van der Heide, A.

Abstract

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants' ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of 'choice'.

Published
2024

5. Stoma-free survival after anastomotic leak following rectal cancer resection: worldwide cohort of 2470 patients

Author

Greijdanus, N, Wienholts, K, Ubels, S, Talboom, K, Hannink, G, Wolthuis, A, de Lacy, F, Lefevre, J, Solomon, M, Frasson, M, Rotholtz, N, Denost, Q, Perez, R, Konishi, T, Panis, Y, Rutegard, M, Hompes, R, Rosman, C, van Workum, F, Tanis, P, de Wilt, J, Bremers, A, Ferenschild, F, de Vriendt, S, D'Hoore, A, Bislenghi, G, Farguell, J, Lacy, A, Atienza, P, van Kessel, C, Parc, Y, Voron, T, Collard, M, Muriel, J, Cholewa, H, Mattioni, L, Frontali, A, Polle, S, Polat, F, Obihara, N, Vailati, B, Kusters, M, Tuynmann, J, Hazen, S, Gruter, A, Amano, T, Fujiwara, H, Salomon, M, Ruiz, H, Gonzalez, R, Estefania, D, Avellaneda, N, Carrie, A, Santillan, M, Pachajoa, D, Parodi, M, Gielis, M, Binder, A, Gurtler, T, Riedl, P, Badiani, S, Berney, C, Morgan, M, Hollington, P, da Silva, N, Nair, G, Ho, Y, Lamparelli, M, Kapadia, R, Kroon, H, Dudi-Venkata, N, Liu, J, Sammour, T, Flamey, N, Pattyn, P, Chaoui, A, Vansteenbrugge, L, van den Broek, N, Vanclooster, P, de Gheldere, C, Pletinckx, P, Defoort, B, Dewulf, M, Slavchev, M, Belev, N, Atanasov, B, Krastev, P, Sokolov, M, Maslyankov, S, Gribnev, P, Pavlov, V, Ivanov, T, Karamanliev, M, Filipov, E, Tonchev, P, Aigner, F, Mitteregger, M, Allmer, C, Seitinger, G, Colucci, N, Buchs, N, Ris, F, Toso, C, Gialamas, E, Vuagniaux, A, Chautems, R, Sauvain, M, Daester, S, von Flue, M, Guenin, M, Taha-Mehlitz, S, Hess, G, Martinek, L, Skrovina, M, Machackova, M, Bencurik, V, Uluk, D, Pratschke, J, Dittrich, L, Guel-Klein, S, Perez, D, Grass, J, Melling, N, Mueller, S, Iversen, L, Eriksen, J, Baatrup, G, Al-Najami, I, Bjorsum-Meyer, T, Teras, J, Teras, R, Monib, F, Ahmed, N, Alkady, E, Ali, A, Khedr, G, Abdelaal, A, Ashoush, F, Ewedah, M, Elshennawy, E, Hussein, M, Fernandez-Martinez, D, Garcia-Florez, L, Fernandez-Hevia, M, Suarez-Sanchez, A, Aretxabala, I, Docampo, I, Zabala, J, Tejedor, P, Morales Bernaldo de Quiros, J, Quiroga, I, Navarro-Sanchez, A, Darias, I, Fernandez, C, de La Cruz Cuadrado, C, Sanchez-Guillen, L, Lopez-Rodriguez-Arias, F, Soler-Silva, A, Arroyo, A, Bernal-Sprekelsen, J, Gomez-Abril, S, Gonzalvez, P, Torres, M, Sanchez, T, Antona, F, Lara, J, Montero, J, Mendoza-Moreno, F, Diez-Alonso, M, Matias-Garcia, B, Quiroga-Valcarcel, A, Colas-Ruiz, E, Tasende-Presedo, M, Fernandez-Hurtado, I, Cifuentes-Rodenas, J, Suarez, M, Losada, M, Hernandez, M, Alonso, A, Dieguez, B, Serralta, D, Quintana, R, Lopez, J, Pinto, F, Nieto-Moreno, E, Bonito, A, Santacruz, C, Marcos, E, Septiem, J, Calero-Lillo, A, Alanez-Saavedra, J, Munoz-Collado, S, Lopez-Lara, M, Martinez, M, Herrero, E, Borda, F, Villar, O, Escartin, J, Blas, J, Ferrer, R, Egea, J, Rodriguez-Infante, A, Minguez-Ruiz, G, Carreno-Villarreal, G, Pire-Abaitua, G, Dziakova, J, Rodriguez, C, Aranda, M, Huguet, J, Borda-Arrizabalaga, N, Enriquez-Navascues, J, Echaniz, G, Ansorena, Y, Estaire-Gomez, M, Martinez-Pinedo, C, Barbero-Valenzuela, A, Ruiz-Garcia, P, Kraft, M, Gomez-Jurado, M, Pellino, G, Espin-Basany, E, Cotte, E, Panel, N, Goutard, C, de Angelis, N, Lauka, L, Shaikh, S, Osborne, L, Ramsay, G, Nichita, V, Bhandari, S, Sarmah, P, Bethune, R, Pringle, H, Massey, L, Fowler, G, Hamid, H, de Simone, B, Kynaston, J, Bradley, N, Stienstra, R, Gurjar, S, Mukherjee, T, Chandio, A, Ahmed, S, Singh, B, Runau, F, Chaudhri, S, Siaw, O, Sarveswaran, J, Miu, V, Ashmore, D, Darwich, H, Singh-Ranger, D, Singh, N, Shaban, M, Gareb, F, Petropolou, T, Polydorou, A, Dattani, M, Afzal, A, Bavikatte, A, Sebastian, B, Ward, N, Mishra, A, Manatakis, D, Agalianos, C, Tasis, N, Antonopoulou, M, Karavokyros, I, Charalabopoulos, A, Schizas, D, Baili, E, Syllaios, A, Karydakis, L, Vailas, M, Balalis, D, Korkolis, D, Plastiras, A, Rompou, A, Xenaki, S, Xynos, E, Chrysos, E, Venianaki, M, Christodoulidis, G, Perivoliotis, K, Tzovaras, G, Baloyiannis, I, Ho, M, Ng, S, Mak, T, Futaba, K, Santak, G, Simlesa, D, Cosic, J, Zukanovic, G, Kelly, M, Larkin, J, Mccormick, P, Mehigan, B, Connelly, T, Neary, P, Ryan, J, Mccullough, P, Al-Juaifari, M, Hammoodi, H, Abbood, A, Calabro, M, Muratore, A, La Terra, A, Farnesi, F, Feo, C, Fabbri, N, Pesce, A, Fazzin, M, Roscio, F, Clerici, F, Lucchi, A, Vittori, L, Agostinelli, L, Ripoli, M, Sambucci, D, Porta, A, Sinibaldi, G, Crescentini, G, Larcinese, A, Picone, E, Persiani, R, Biondi, A, Pezzuto, R, Lorenzon, L, Rizzo, G, Coco, C, D'Agostino, L, Spinelli, A, Sacchi, M, Carvello, M, Foppa, C, Maroli, A, Palini, G, Garulli, G, Zanini, N, Delrio, P, Rega, D, Carbone, F, Aversano, A, Pirozzolo, G, Recordare, A, D'Alimonte, L, Vignotto, C, Corbellini, C, Sampietro, G, Lorusso, L, Manzo, C, Ghignone, F, Ugolini, G, Montroni, I, Pasini, F, Ballabio, M, Bisagni, P, Armao, F, Longhi, M, Ghazouani, O, Galleano, R, Tamini, N, Oldani, M, Nespoli, L, Picciariello, A, Altomare, D, Tomasicchio, G, Lantone, G, Catena, F, Giuffrida, M, Annicchiarico, A, Perrone, G, Grossi, U, Santoro, G, Zanus, G, Iacomino, A, Novello, S, Passuello, N, Zucchella, M, Puca, L, Degiuli, M, Reddavid, R, Scabini, S, Aprile, A, Soriero, D, Fioravanti, E, Rottoli, M, Romano, A, Tanzanu, M, Belvedere, A, Mariani, N, Ceretti, A, Opocher, E, Gallo, G, Sammarco, G, de Paola, G, Pucciarelli, S, Marchegiani, F, Spolverato, G, Buzzi, G, Di Saverio, S, Meroni, P, Parise, C, Bottazzoli, E, Lapolla, P, Brachini, G, Cirillo, B, Mingoli, A, Sica, G, Siragusa, L, Bellato, V, Cerbo, D, de Pasqual, C, de Manzoni, G, di Cosmo, M, Alrayes, B, Qandeel, M, Hani, M, Rabadi, A, el Muhtaseb, M, Abdeen, B, Karmi, F, Zilinskas, J, Latkauskas, T, Tamelis, A, Pikuniene, I, Slenfuktas, V, Poskus, T, Kryzauskas, M, Jakubauskas, M, Mikalauskas, S, Jakubauskiene, L, Hassan, S, Altrabulsi, A, Abdulwahed, E, Ghmagh, R, Deeknah, A, Alshareea, E, Elhadi, M, Abujamra, S, Msherghi, A, Tababa, O, Majbar, M, Souadka, A, Benkabbou, A, Mohsine, R, Echiguer, S, Moctezuma-Velazquez, P, Salgado-Nesme, N, Vergara-Fernandez, O, Sainz-Hernandez, J, Alvarez-Bautista, F, Zakaria, A, Zakaria, Z, Wong, M, Ismail, R, Ibrahim, A, Abdullah, N, Julaihi, R, Bhat, S, O'Grady, G, Bissett, I, Lamme, B, Musters, G, Dinaux, A, Grotenhuis, B, Steller, E, Aalbers, A, Leeuwenburgh, M, Rutten, H, Burger, J, Bloemen, J, Ketelaers, S, Waqar, U, Chawla, T, Rauf, H, Rani, P, Talsma, A, Scheurink, L, van Praagh, J, Segelman, J, Nygren, J, Anderin, K, Tiefenthal, M, de Andres, B, Beltran de Heredia, J, Vazquez, A, Gomez, T, Golshani, P, Kader, R, Mohamed, A, Westerterp, M, Marinelli, A, Niemer, Q, Doornebosch, P, Shapiro, J, Vermaas, M, de Graaf, E, van Westreenen, H, Zwakman, M, van Dalsen, A, Vles, W, Nonner, J, Toorenvliet, B, Janssen, P, Verdaasdonk, E, Amelung, F, Peeters, K, Bahadoer, R, Holman, F, Heemskerk, J, Vosbeek, N, Leijtens, J, Taverne, S, Heijnen, B, El-Massoudi, Y, de Groot-Van Veen, I, Hoff, C, Jou-Valencia, D, Consten, E, Burghgraef, T, Geitenbeek, R, Hulshof, L, Slooter, G, Reudink, M, Bouvy, N, Wildeboer, A, Verstappen, S, Pennings, A, van den Hengel, B, Wijma, A, de Haan, J, de Nes, L, Heesink, V, Karsten, T, Heidsma, C, Koemans, W, Dekker, J, van der Zijden, C, Roos, D, Demirkiran, A, van der Burg, S, Oosterling, S, Hoogteijling, T, Wiering, B, Smeeing, D, Havenga, K, Lutfi, H, Tsimogiannis, K, Skoldberg, F, Folkesson, J, den Boer, F, van Schaik, T, van Gerven, P, Sietses, C, Hol, J, Boerma, E, Creemers, D, Schultz, J, Frivold, T, Riis, R, Gregussen, H, Busund, S, Sjo, O, Gaard, M, Krohn, N, Ersryd, A, Leung, E, Sultan, H, Hajjaj, B, Alhisi, A, Khader, A, Mendes, A, Semiao, M, Faria, L, Azevedo, C, da Costa Devesa, H, Martins, S, Jarimba, A, Marques, S, Ferreira, R, Oliveira, A, Ferreira, C, Pereira, R, Surlin, V, Graure, G, Ramboiu, S, Negoi, I, Ciubotaru, C, Stoica, B, Tanase, I, Negoita, V, Florea, S, Macau, F, Vasile, M, Stefanescu, V, Dimofte, G, Lunca, S, Roata, C, Musina, A, Garmanova, T, Agapov, M, Markaryan, D, Eduard, G, Yanishev, A, Abelevich, A, Bazaev, A, Rodimov, S, Filimonov, V, Melnikov, A, Suchkov, I, Drozdov, E, Kostromitskiy, D, Sjostrom, O, Matthiessen, P, Baban, B, Gadan, S, Jadid, K, Staffan, M, Park, J, Rydbeck, D, Lydrup, M, Buchwald, P, Jutesten, H, Darlin, L, Lindqvist, E, Nilsson, K, Larsson, P, Jangmalm, S, Kosir, J, Tomazic, A, Grosek, J, Bozic, T, Zazo, A, Zazo, R, Fares, H, Ayoub, K, Niazi, A, Mansour, A, Abbas, A, Tantoura, M, Hamdan, A, Hassan, N, Hasan, B, Saad, A, Sebai, A, Haddad, A, Maghrebi, H, Kacem, M, Yalkin, O, Samsa, M, Atak, I, Balci, B, Haberal, E, Dogan, L, Gecim, I, Akyol, C, Koc, M, Sivrikoz, E, Piyadeoglu, D, Avanagh, D, Sokmen, S, Bisgin, T, Gunenc, E, Guzel, M, Leventoglu, S, Yuksel, O, Kozan, R, Gobut, H, Cengiz, F, Erdinc, K, Acar, N, Kamer, E, Ozgur, I, Aydin, O, Keskin, M, Bulut, M, Kulle, C, Kara, Y, Sibic, O, Ozata, I, Bugra, D, Balik, E, Cakir, M, Alhardan, A, Colak, E, Aybar, A, Sari, A, Atici, S, Kaya, T, Dursun, A, Calik, B, Ozkan, O, Ulgur, H, Duzgun, O, Monson, J, George, S, Woods, K, Al-Eryani, F, Albakry, R, Coetzee, E, Boutall, A, Herman, A, Warden, C, Mugla, N, Forgan, T, Mia, I, Lambrechts, A, Greijdanus N. G., Wienholts K., Ubels S., Talboom K., Hannink G., Wolthuis A., de Lacy F. B., Lefevre J. H., Solomon M., Frasson M., Rotholtz N., Denost Q., Perez R. O., Konishi T., Panis Y., Rutegard M., Hompes R., Rosman C., van Workum F., Tanis P. J., de Wilt J. H. W., Bremers A. J. A., Ferenschild F. T., de Vriendt S., D'Hoore A., Bislenghi G., Farguell J., Lacy A. M., Atienza P. G., van Kessel C. S., Parc Y., Voron T., Collard M. K., Muriel J. S., Cholewa H., Mattioni L. A., Frontali A., Polle S. W., Polat F., Obihara N. J., Vailati B. B., Kusters M., Tuynmann J. B., Hazen S. J. A., Gruter A. A. J., Amano T., Fujiwara H., Salomon M., Ruiz H., Gonzalez R., Estefania D., Avellaneda N., Carrie A., Santillan M., Pachajoa D. A. P., Parodi M., Gielis M., Binder A. -D., Gurtler T., Riedl P., Badiani S., Berney C., Morgan M., Hollington P., da Silva N., Nair G., Ho Y. M., Lamparelli M., Kapadia R., Kroon H. M., Dudi-Venkata N. N., Liu J., Sammour T., Flamey N., Pattyn P., Chaoui A., Vansteenbrugge L., van den Broek N. E. J., Vanclooster P., de Gheldere C., Pletinckx P., Defoort B., Dewulf M., Slavchev M., Belev N., Atanasov B., Krastev P., Sokolov M., Maslyankov S., Gribnev P., Pavlov V., Ivanov T., Karamanliev M., Filipov E., Tonchev P., Aigner F., Mitteregger M., Allmer C., Seitinger G., Colucci N., Buchs N., Ris F., Toso C., Gialamas E., Vuagniaux A., Chautems R., Sauvain M. -O., Daester S., von Flue M., Guenin M. -O., Taha-Mehlitz S., Hess G. F., Martinek L., Skrovina M., Machackova M., Bencurik V., Uluk D., Pratschke J., Dittrich L. S., Guel-Klein S., Perez D., Grass J. -K., Melling N., Mueller S., Iversen L. H., Eriksen J. D., Baatrup G., Al-Najami I., Bjorsum-Meyer T., Teras J., Teras R. M., Monib F. A., Ahmed N. E. A. E., Alkady E., Ali A. K., Khedr G. A. E., Abdelaal A. S., Ashoush F. M. B., Ewedah M., Elshennawy E. M., Hussein M., Fernandez-Martinez D., Garcia-Florez L. J., Fernandez-Hevia M., Suarez-Sanchez A., Aretxabala I. D. H., Docampo I. L., Zabala J. G., Tejedor P., Morales Bernaldo de Quiros J. T., Quiroga I. B., Navarro-Sanchez A., Darias I. S., Fernandez C. L., de La Cruz Cuadrado C., Sanchez-Guillen L., Lopez-Rodriguez-Arias F., Soler-Silva A., Arroyo A., Bernal-Sprekelsen J. C., Gomez-Abril S. A., Gonzalvez P., Torres M. T., Sanchez T. R., Antona F. B., Lara J. E. S., Montero J. A. A., Mendoza-Moreno F., Diez-Alonso M., Matias-Garcia B., Quiroga-Valcarcel A., Colas-Ruiz E., Tasende-Presedo M. M., Fernandez-Hurtado I., Cifuentes-Rodenas J. A., Suarez M. C., Losada M., Hernandez M., Alonso A., Dieguez B., Serralta D., Quintana R. E. M., Lopez J. M. G., Pinto F. L., Nieto-Moreno E., Bonito A. C., Santacruz C. C., Marcos E. B., Septiem J. G., Calero-Lillo A., Alanez-Saavedra J., Munoz-Collado S., Lopez-Lara M., Martinez M. L., Herrero E. F., Borda F. J. G., Villar O. G., Escartin J., Blas J. L., Ferrer R., Egea J. G., Rodriguez-Infante A., Minguez-Ruiz G., Carreno-Villarreal G., Pire-Abaitua G., Dziakova J., Rodriguez C. S. -C., Aranda M. J. P., Huguet J. M. M., Borda-Arrizabalaga N., Enriquez-Navascues J. M., Echaniz G. E., Ansorena Y. S., Estaire-Gomez M., Martinez-Pinedo C., Barbero-Valenzuela A., Ruiz-Garcia P., Kraft M., Gomez-Jurado M. J., Pellino G., Espin-Basany E., Cotte E., Panel N., Goutard C. -A., de Angelis N., Lauka L., Shaikh S., Osborne L., Ramsay G., Nichita V. -I., Bhandari S., Sarmah P., Bethune R. M., Pringle H. C. M., Massey L., Fowler G. E., Hamid H. K. S., de Simone B. D., Kynaston J., Bradley N., Stienstra R. M., Gurjar S., Mukherjee T., Chandio A., Ahmed S., Singh B., Runau F., Chaudhri S., Siaw O., Sarveswaran J., Miu V., Ashmore D., Darwich H., Singh-Ranger D., Singh N., Shaban M., Gareb F., Petropolou T., Polydorou A., Dattani M., Afzal A., Bavikatte A., Sebastian B., Ward N., Mishra A., Manatakis D., Agalianos C., Tasis N., Antonopoulou M. -I., Karavokyros I., Charalabopoulos A., Schizas D., Baili E., Syllaios A., Karydakis L., Vailas M., Balalis D., Korkolis D., Plastiras A., Rompou A., Xenaki S., Xynos E., Chrysos E., Venianaki M., Christodoulidis G., Perivoliotis K., Tzovaras G., Baloyiannis I., Ho M. -F., Ng S. S., Mak T. W. -C., Futaba K., Santak G., Simlesa D., Cosic J., Zukanovic G., Kelly M. E., Larkin J. O., McCormick P. H., Mehigan B. J., Connelly T. M., Neary P., Ryan J., McCullough P., Al-Juaifari M. A., Hammoodi H., Abbood A. H., Calabro M., Muratore A., La Terra A., Farnesi F., Feo C. V., Fabbri N., Pesce A., Fazzin M., Roscio F., Clerici F., Lucchi A., Vittori L., Agostinelli L., Ripoli M. C., Sambucci D., Porta A., Sinibaldi G., Crescentini G., Larcinese A., Picone E., Persiani R., Biondi A., Pezzuto R., Lorenzon L., Rizzo G., Coco C., D'Agostino L., Spinelli A., Sacchi M. M., Carvello M., Foppa C., Maroli A., Palini G. M., Garulli G., Zanini N., Delrio P., Rega D., Carbone F., Aversano A., Pirozzolo G., Recordare A., D'Alimonte L., Vignotto C., Corbellini C., Sampietro G. M., Lorusso L., Manzo C. A., Ghignone F., Ugolini G., Montroni I., Pasini F., Ballabio M., Bisagni P., Armao F. T., Longhi M., Ghazouani O., Galleano R., Tamini N., Oldani M., Nespoli L., Picciariello A., Altomare D. F., Tomasicchio G., Lantone G., Catena F., Giuffrida M., Annicchiarico A., Perrone G., Grossi U., Santoro G. A., Zanus G., Iacomino A., Novello S., Passuello N., Zucchella M., Puca L., deGiuli M., Reddavid R., Scabini S., Aprile A., Soriero D., Fioravanti E., Rottoli M., Romano A., Tanzanu M., Belvedere A., Mariani N. M., Ceretti A. P., Opocher E., Gallo G., Sammarco G., de Paola G., Pucciarelli S., Marchegiani F., Spolverato G., Buzzi G., Di Saverio S., Meroni P., Parise C., Bottazzoli E. I., Lapolla P., Brachini G., Cirillo B., Mingoli A., Sica G., Siragusa L., Bellato V., Cerbo D., de Pasqual C. A., de Manzoni G., di Cosmo M. A., Alrayes B. M. H., Qandeel M. W. M., Hani M. B., Rabadi A., el Muhtaseb M. S., Abdeen B., Karmi F., Zilinskas J., Latkauskas T., Tamelis A., Pikuniene I., Slenfuktas V., Poskus T., Kryzauskas M., Jakubauskas M., Mikalauskas S., Jakubauskiene L., Hassan S. Y., Altrabulsi A., Abdulwahed E., Ghmagh R., Deeknah A., Alshareea E., Elhadi M., Abujamra S., Msherghi A. A., Tababa O. W. E., Majbar M. A., Souadka A., Benkabbou A., Mohsine R., Echiguer S., Moctezuma-Velazquez P., Salgado-Nesme N., Vergara-Fernandez O., Sainz-Hernandez J. C., Alvarez-Bautista F. E., Zakaria A. D., Zakaria Z., Wong M. P. K., Ismail R., Ibrahim A. F., Abdullah N. A. N., Julaihi R., Bhat S., O'Grady G., Bissett I., Lamme B., Musters G. D., Dinaux A. M., Grotenhuis B. A., Steller E. J., Aalbers A. G. J., Leeuwenburgh M. M., Rutten H. J. T., Burger J. W. A., Bloemen J. G., Ketelaers S. H. J., Waqar U., Chawla T., Rauf H., Rani P., Talsma A. K., Scheurink L., van Praagh J. B., Segelman J., Nygren J., Anderin K., Tiefenthal M., de Andres B., Beltran de Heredia J. P., Vazquez A., Gomez T., Golshani P., Kader R., Mohamed A., Westerterp M., Marinelli A., Niemer Q., Doornebosch P. G., Shapiro J., Vermaas M., de Graaf E. J. R., van Westreenen H. L., Zwakman M., van Dalsen A. D., Vles W. J., Nonner J., Toorenvliet B. R., Janssen P. T. J., Verdaasdonk E. G. G., Amelung F. J., Peeters K. C. M. J., Bahadoer R. R., Holman F. A., Heemskerk J., Vosbeek N., Leijtens J. W. A., Taverne S. B. M., Heijnen B. H. M., El-Massoudi Y., de Groot-Van Veen I., Hoff C., Jou-Valencia D., Consten E. C. J., Burghgraef T. A., Geitenbeek R., Hulshof L. G. W. L., Slooter G. D., Reudink M., Bouvy N. D., Wildeboer A. C. L., Verstappen S., Pennings A. J., van den Hengel B., Wijma A. G., de Haan J., de Nes L. C. F., Heesink V., Karsten T., Heidsma C. M., Koemans W. J., Dekker J. -W. T., van der Zijden C. J., Roos D., Demirkiran A., van der Burg S., Oosterling S. J., Hoogteijling T. J., Wiering B., Smeeing D. P. J., Havenga K., Lutfi H., Tsimogiannis K., Skoldberg F., Folkesson J., den Boer F., van Schaik T. G., van Gerven P., Sietses C., Hol J. C., Boerma E. -J. G., Creemers D. M. J., Schultz J. K., Frivold T., Riis R., Gregussen H., Busund S., Sjo O. H., Gaard M., Krohn N., Ersryd A. L., Leung E., Sultan H., Hajjaj B. N., Alhisi A. J., Khader A. A. E., Mendes A. F. D., Semiao M., Faria L. Q., Azevedo C., da Costa Devesa H. M., Martins S. F., Jarimba A. M. R., Marques S. M. R., Ferreira R. M., Oliveira A., Ferreira C., Pereira R., Surlin V. M., Graure G. M., Ramboiu S. P. S. D., Negoi I., Ciubotaru C., Stoica B., Tanase I., Negoita V. M., Florea S., Macau F., Vasile M., Stefanescu V., Dimofte G. -M., Lunca S., Roata C. -E., Musina A. -M., Garmanova T., Agapov M. N., Markaryan D. G., Eduard G., Yanishev A., Abelevich A., Bazaev A., Rodimov S. V., Filimonov V. B., Melnikov A. A., Suchkov I. A., Drozdov E. S., Kostromitskiy D. N., Sjostrom O., Matthiessen P., Baban B., Gadan S., Jadid K. D., Staffan M., Park J. M., Rydbeck D., Lydrup M. -L., Buchwald P., Jutesten H., Darlin L., Lindqvist E., Nilsson K., Larsson P. -A., Jangmalm S., Kosir J. A., Tomazic A., Grosek J., Bozic T. K., Zazo A., Zazo R., Fares H., Ayoub K., Niazi A., Mansour A., Abbas A., Tantoura M., Hamdan A., Hassan N., Hasan B., Saad A., Sebai A., Haddad A., Maghrebi H., Kacem M., Yalkin O., Samsa M. V., Atak I., Balci B., Haberal E., Dogan L., Gecim I. E., Akyol C., Koc M. A., Sivrikoz E., Piyadeoglu D., Avanagh D. O., Sokmen S., Bisgin T., Gunenc E., Guzel M., Leventoglu S., Yuksel O., Kozan R., Gobut H., Cengiz F., Erdinc K., Acar N. C., Kamer E., Ozgur I., Aydin O., Keskin M., Bulut M. T., Kulle C. B., Kara Y., Sibic O., Ozata I. H., Bugra D., Balik E., Cakir M., Alhardan A., Colak E., Aybar A. B. C., Sari A. C., Atici S. D., Kaya T., Dursun A., Calik B., Ozkan O. F., Ulgur H. S., Duzgun O., Monson J., George S., Woods K., Al-Eryani F., Albakry R., Coetzee E., Boutall A., Herman A., Warden C., Mugla N., Forgan T., Mia I., Lambrechts A., Greijdanus, N, Wienholts, K, Ubels, S, Talboom, K, Hannink, G, Wolthuis, A, de Lacy, F, Lefevre, J, Solomon, M, Frasson, M, Rotholtz, N, Denost, Q, Perez, R, Konishi, T, Panis, Y, Rutegard, M, Hompes, R, Rosman, C, van Workum, F, Tanis, P, de Wilt, J, Bremers, A, Ferenschild, F, de Vriendt, S, D'Hoore, A, Bislenghi, G, Farguell, J, Lacy, A, Atienza, P, van Kessel, C, Parc, Y, Voron, T, Collard, M, Muriel, J, Cholewa, H, Mattioni, L, Frontali, A, Polle, S, Polat, F, Obihara, N, Vailati, B, Kusters, M, Tuynmann, J, Hazen, S, Gruter, A, Amano, T, Fujiwara, H, Salomon, M, Ruiz, H, Gonzalez, R, Estefania, D, Avellaneda, N, Carrie, A, Santillan, M, Pachajoa, D, Parodi, M, Gielis, M, Binder, A, Gurtler, T, Riedl, P, Badiani, S, Berney, C, Morgan, M, Hollington, P, da Silva, N, Nair, G, Ho, Y, Lamparelli, M, Kapadia, R, Kroon, H, Dudi-Venkata, N, Liu, J, Sammour, T, Flamey, N, Pattyn, P, Chaoui, A, Vansteenbrugge, L, van den Broek, N, Vanclooster, P, de Gheldere, C, Pletinckx, P, Defoort, B, Dewulf, M, Slavchev, M, Belev, N, Atanasov, B, Krastev, P, Sokolov, M, Maslyankov, S, Gribnev, P, Pavlov, V, Ivanov, T, Karamanliev, M, Filipov, E, Tonchev, P, Aigner, F, Mitteregger, M, Allmer, C, Seitinger, G, Colucci, N, Buchs, N, Ris, F, Toso, C, Gialamas, E, Vuagniaux, A, Chautems, R, Sauvain, M, Daester, S, von Flue, M, Guenin, M, Taha-Mehlitz, S, Hess, G, Martinek, L, Skrovina, M, Machackova, M, Bencurik, V, Uluk, D, Pratschke, J, Dittrich, L, Guel-Klein, S, Perez, D, Grass, J, Melling, N, Mueller, S, Iversen, L, Eriksen, J, Baatrup, G, Al-Najami, I, Bjorsum-Meyer, T, Teras, J, Teras, R, Monib, F, Ahmed, N, Alkady, E, Ali, A, Khedr, G, Abdelaal, A, Ashoush, F, Ewedah, M, Elshennawy, E, Hussein, M, Fernandez-Martinez, D, Garcia-Florez, L, Fernandez-Hevia, M, Suarez-Sanchez, A, Aretxabala, I, Docampo, I, Zabala, J, Tejedor, P, Morales Bernaldo de Quiros, J, Quiroga, I, Navarro-Sanchez, A, Darias, I, Fernandez, C, de La Cruz Cuadrado, C, Sanchez-Guillen, L, Lopez-Rodriguez-Arias, F, Soler-Silva, A, Arroyo, A, Bernal-Sprekelsen, J, Gomez-Abril, S, Gonzalvez, P, Torres, M, Sanchez, T, Antona, F, Lara, J, Montero, J, Mendoza-Moreno, F, Diez-Alonso, M, Matias-Garcia, B, Quiroga-Valcarcel, A, Colas-Ruiz, E, Tasende-Presedo, M, Fernandez-Hurtado, I, Cifuentes-Rodenas, J, Suarez, M, Losada, M, Hernandez, M, Alonso, A, Dieguez, B, Serralta, D, Quintana, R, Lopez, J, Pinto, F, Nieto-Moreno, E, Bonito, A, Santacruz, C, Marcos, E, Septiem, J, Calero-Lillo, A, Alanez-Saavedra, J, Munoz-Collado, S, Lopez-Lara, M, Martinez, M, Herrero, E, Borda, F, Villar, O, Escartin, J, Blas, J, Ferrer, R, Egea, J, Rodriguez-Infante, A, Minguez-Ruiz, G, Carreno-Villarreal, G, Pire-Abaitua, G, Dziakova, J, Rodriguez, C, Aranda, M, Huguet, J, Borda-Arrizabalaga, N, Enriquez-Navascues, J, Echaniz, G, Ansorena, Y, Estaire-Gomez, M, Martinez-Pinedo, C, Barbero-Valenzuela, A, Ruiz-Garcia, P, Kraft, M, Gomez-Jurado, M, Pellino, G, Espin-Basany, E, Cotte, E, Panel, N, Goutard, C, de Angelis, N, Lauka, L, Shaikh, S, Osborne, L, Ramsay, G, Nichita, V, Bhandari, S, Sarmah, P, Bethune, R, Pringle, H, Massey, L, Fowler, G, Hamid, H, de Simone, B, Kynaston, J, Bradley, N, Stienstra, R, Gurjar, S, Mukherjee, T, Chandio, A, Ahmed, S, Singh, B, Runau, F, Chaudhri, S, Siaw, O, Sarveswaran, J, Miu, V, Ashmore, D, Darwich, H, Singh-Ranger, D, Singh, N, Shaban, M, Gareb, F, Petropolou, T, Polydorou, A, Dattani, M, Afzal, A, Bavikatte, A, Sebastian, B, Ward, N, Mishra, A, Manatakis, D, Agalianos, C, Tasis, N, Antonopoulou, M, Karavokyros, I, Charalabopoulos, A, Schizas, D, Baili, E, Syllaios, A, Karydakis, L, Vailas, M, Balalis, D, Korkolis, D, Plastiras, A, Rompou, A, Xenaki, S, Xynos, E, Chrysos, E, Venianaki, M, Christodoulidis, G, Perivoliotis, K, Tzovaras, G, Baloyiannis, I, Ho, M, Ng, S, Mak, T, Futaba, K, Santak, G, Simlesa, D, Cosic, J, Zukanovic, G, Kelly, M, Larkin, J, Mccormick, P, Mehigan, B, Connelly, T, Neary, P, Ryan, J, Mccullough, P, Al-Juaifari, M, Hammoodi, H, Abbood, A, Calabro, M, Muratore, A, La Terra, A, Farnesi, F, Feo, C, Fabbri, N, Pesce, A, Fazzin, M, Roscio, F, Clerici, F, Lucchi, A, Vittori, L, Agostinelli, L, Ripoli, M, Sambucci, D, Porta, A, Sinibaldi, G, Crescentini, G, Larcinese, A, Picone, E, Persiani, R, Biondi, A, Pezzuto, R, Lorenzon, L, Rizzo, G, Coco, C, D'Agostino, L, Spinelli, A, Sacchi, M, Carvello, M, Foppa, C, Maroli, A, Palini, G, Garulli, G, Zanini, N, Delrio, P, Rega, D, Carbone, F, Aversano, A, Pirozzolo, G, Recordare, A, D'Alimonte, L, Vignotto, C, Corbellini, C, Sampietro, G, Lorusso, L, Manzo, C, Ghignone, F, Ugolini, G, Montroni, I, Pasini, F, Ballabio, M, Bisagni, P, Armao, F, Longhi, M, Ghazouani, O, Galleano, R, Tamini, N, Oldani, M, Nespoli, L, Picciariello, A, Altomare, D, Tomasicchio, G, Lantone, G, Catena, F, Giuffrida, M, Annicchiarico, A, Perrone, G, Grossi, U, Santoro, G, Zanus, G, Iacomino, A, Novello, S, Passuello, N, Zucchella, M, Puca, L, Degiuli, M, Reddavid, R, Scabini, S, Aprile, A, Soriero, D, Fioravanti, E, Rottoli, M, Romano, A, Tanzanu, M, Belvedere, A, Mariani, N, Ceretti, A, Opocher, E, Gallo, G, Sammarco, G, de Paola, G, Pucciarelli, S, Marchegiani, F, Spolverato, G, Buzzi, G, Di Saverio, S, Meroni, P, Parise, C, Bottazzoli, E, Lapolla, P, Brachini, G, Cirillo, B, Mingoli, A, Sica, G, Siragusa, L, Bellato, V, Cerbo, D, de Pasqual, C, de Manzoni, G, di Cosmo, M, Alrayes, B, Qandeel, M, Hani, M, Rabadi, A, el Muhtaseb, M, Abdeen, B, Karmi, F, Zilinskas, J, Latkauskas, T, Tamelis, A, Pikuniene, I, Slenfuktas, V, Poskus, T, Kryzauskas, M, Jakubauskas, M, Mikalauskas, S, Jakubauskiene, L, Hassan, S, Altrabulsi, A, Abdulwahed, E, Ghmagh, R, Deeknah, A, Alshareea, E, Elhadi, M, Abujamra, S, Msherghi, A, Tababa, O, Majbar, M, Souadka, A, Benkabbou, A, Mohsine, R, Echiguer, S, Moctezuma-Velazquez, P, Salgado-Nesme, N, Vergara-Fernandez, O, Sainz-Hernandez, J, Alvarez-Bautista, F, Zakaria, A, Zakaria, Z, Wong, M, Ismail, R, Ibrahim, A, Abdullah, N, Julaihi, R, Bhat, S, O'Grady, G, Bissett, I, Lamme, B, Musters, G, Dinaux, A, Grotenhuis, B, Steller, E, Aalbers, A, Leeuwenburgh, M, Rutten, H, Burger, J, Bloemen, J, Ketelaers, S, Waqar, U, Chawla, T, Rauf, H, Rani, P, Talsma, A, Scheurink, L, van Praagh, J, Segelman, J, Nygren, J, Anderin, K, Tiefenthal, M, de Andres, B, Beltran de Heredia, J, Vazquez, A, Gomez, T, Golshani, P, Kader, R, Mohamed, A, Westerterp, M, Marinelli, A, Niemer, Q, Doornebosch, P, Shapiro, J, Vermaas, M, de Graaf, E, van Westreenen, H, Zwakman, M, van Dalsen, A, Vles, W, Nonner, J, Toorenvliet, B, Janssen, P, Verdaasdonk, E, Amelung, F, Peeters, K, Bahadoer, R, Holman, F, Heemskerk, J, Vosbeek, N, Leijtens, J, Taverne, S, Heijnen, B, El-Massoudi, Y, de Groot-Van Veen, I, Hoff, C, Jou-Valencia, D, Consten, E, Burghgraef, T, Geitenbeek, R, Hulshof, L, Slooter, G, Reudink, M, Bouvy, N, Wildeboer, A, Verstappen, S, Pennings, A, van den Hengel, B, Wijma, A, de Haan, J, de Nes, L, Heesink, V, Karsten, T, Heidsma, C, Koemans, W, Dekker, J, van der Zijden, C, Roos, D, Demirkiran, A, van der Burg, S, Oosterling, S, Hoogteijling, T, Wiering, B, Smeeing, D, Havenga, K, Lutfi, H, Tsimogiannis, K, Skoldberg, F, Folkesson, J, den Boer, F, van Schaik, T, van Gerven, P, Sietses, C, Hol, J, Boerma, E, Creemers, D, Schultz, J, Frivold, T, Riis, R, Gregussen, H, Busund, S, Sjo, O, Gaard, M, Krohn, N, Ersryd, A, Leung, E, Sultan, H, Hajjaj, B, Alhisi, A, Khader, A, Mendes, A, Semiao, M, Faria, L, Azevedo, C, da Costa Devesa, H, Martins, S, Jarimba, A, Marques, S, Ferreira, R, Oliveira, A, Ferreira, C, Pereira, R, Surlin, V, Graure, G, Ramboiu, S, Negoi, I, Ciubotaru, C, Stoica, B, Tanase, I, Negoita, V, Florea, S, Macau, F, Vasile, M, Stefanescu, V, Dimofte, G, Lunca, S, Roata, C, Musina, A, Garmanova, T, Agapov, M, Markaryan, D, Eduard, G, Yanishev, A, Abelevich, A, Bazaev, A, Rodimov, S, Filimonov, V, Melnikov, A, Suchkov, I, Drozdov, E, Kostromitskiy, D, Sjostrom, O, Matthiessen, P, Baban, B, Gadan, S, Jadid, K, Staffan, M, Park, J, Rydbeck, D, Lydrup, M, Buchwald, P, Jutesten, H, Darlin, L, Lindqvist, E, Nilsson, K, Larsson, P, Jangmalm, S, Kosir, J, Tomazic, A, Grosek, J, Bozic, T, Zazo, A, Zazo, R, Fares, H, Ayoub, K, Niazi, A, Mansour, A, Abbas, A, Tantoura, M, Hamdan, A, Hassan, N, Hasan, B, Saad, A, Sebai, A, Haddad, A, Maghrebi, H, Kacem, M, Yalkin, O, Samsa, M, Atak, I, Balci, B, Haberal, E, Dogan, L, Gecim, I, Akyol, C, Koc, M, Sivrikoz, E, Piyadeoglu, D, Avanagh, D, Sokmen, S, Bisgin, T, Gunenc, E, Guzel, M, Leventoglu, S, Yuksel, O, Kozan, R, Gobut, H, Cengiz, F, Erdinc, K, Acar, N, Kamer, E, Ozgur, I, Aydin, O, Keskin, M, Bulut, M, Kulle, C, Kara, Y, Sibic, O, Ozata, I, Bugra, D, Balik, E, Cakir, M, Alhardan, A, Colak, E, Aybar, A, Sari, A, Atici, S, Kaya, T, Dursun, A, Calik, B, Ozkan, O, Ulgur, H, Duzgun, O, Monson, J, George, S, Woods, K, Al-Eryani, F, Albakry, R, Coetzee, E, Boutall, A, Herman, A, Warden, C, Mugla, N, Forgan, T, Mia, I, Lambrechts, A, Greijdanus N. G., Wienholts K., Ubels S., Talboom K., Hannink G., Wolthuis A., de Lacy F. B., Lefevre J. H., Solomon M., Frasson M., Rotholtz N., Denost Q., Perez R. O., Konishi T., Panis Y., Rutegard M., Hompes R., Rosman C., van Workum F., Tanis P. J., de Wilt J. H. W., Bremers A. J. A., Ferenschild F. T., de Vriendt S., D'Hoore A., Bislenghi G., Farguell J., Lacy A. M., Atienza P. G., van Kessel C. S., Parc Y., Voron T., Collard M. K., Muriel J. S., Cholewa H., Mattioni L. A., Frontali A., Polle S. W., Polat F., Obihara N. J., Vailati B. B., Kusters M., Tuynmann J. B., Hazen S. J. A., Gruter A. A. J., Amano T., Fujiwara H., Salomon M., Ruiz H., Gonzalez R., Estefania D., Avellaneda N., Carrie A., Santillan M., Pachajoa D. A. P., Parodi M., Gielis M., Binder A. -D., Gurtler T., Riedl P., Badiani S., Berney C., Morgan M., Hollington P., da Silva N., Nair G., Ho Y. M., Lamparelli M., Kapadia R., Kroon H. M., Dudi-Venkata N. N., Liu J., Sammour T., Flamey N., Pattyn P., Chaoui A., Vansteenbrugge L., van den Broek N. E. J., Vanclooster P., de Gheldere C., Pletinckx P., Defoort B., Dewulf M., Slavchev M., Belev N., Atanasov B., Krastev P., Sokolov M., Maslyankov S., Gribnev P., Pavlov V., Ivanov T., Karamanliev M., Filipov E., Tonchev P., Aigner F., Mitteregger M., Allmer C., Seitinger G., Colucci N., Buchs N., Ris F., Toso C., Gialamas E., Vuagniaux A., Chautems R., Sauvain M. -O., Daester S., von Flue M., Guenin M. -O., Taha-Mehlitz S., Hess G. F., Martinek L., Skrovina M., Machackova M., Bencurik V., Uluk D., Pratschke J., Dittrich L. S., Guel-Klein S., Perez D., Grass J. -K., Melling N., Mueller S., Iversen L. H., Eriksen J. D., Baatrup G., Al-Najami I., Bjorsum-Meyer T., Teras J., Teras R. M., Monib F. A., Ahmed N. E. A. E., Alkady E., Ali A. K., Khedr G. A. E., Abdelaal A. S., Ashoush F. M. B., Ewedah M., Elshennawy E. M., Hussein M., Fernandez-Martinez D., Garcia-Florez L. J., Fernandez-Hevia M., Suarez-Sanchez A., Aretxabala I. D. H., Docampo I. L., Zabala J. G., Tejedor P., Morales Bernaldo de Quiros J. T., Quiroga I. B., Navarro-Sanchez A., Darias I. S., Fernandez C. L., de La Cruz Cuadrado C., Sanchez-Guillen L., Lopez-Rodriguez-Arias F., Soler-Silva A., Arroyo A., Bernal-Sprekelsen J. C., Gomez-Abril S. A., Gonzalvez P., Torres M. T., Sanchez T. R., Antona F. B., Lara J. E. S., Montero J. A. A., Mendoza-Moreno F., Diez-Alonso M., Matias-Garcia B., Quiroga-Valcarcel A., Colas-Ruiz E., Tasende-Presedo M. M., Fernandez-Hurtado I., Cifuentes-Rodenas J. A., Suarez M. C., Losada M., Hernandez M., Alonso A., Dieguez B., Serralta D., Quintana R. E. M., Lopez J. M. G., Pinto F. L., Nieto-Moreno E., Bonito A. C., Santacruz C. C., Marcos E. B., Septiem J. G., Calero-Lillo A., Alanez-Saavedra J., Munoz-Collado S., Lopez-Lara M., Martinez M. L., Herrero E. F., Borda F. J. G., Villar O. G., Escartin J., Blas J. L., Ferrer R., Egea J. G., Rodriguez-Infante A., Minguez-Ruiz G., Carreno-Villarreal G., Pire-Abaitua G., Dziakova J., Rodriguez C. S. -C., Aranda M. J. P., Huguet J. M. M., Borda-Arrizabalaga N., Enriquez-Navascues J. M., Echaniz G. E., Ansorena Y. S., Estaire-Gomez M., Martinez-Pinedo C., Barbero-Valenzuela A., Ruiz-Garcia P., Kraft M., Gomez-Jurado M. J., Pellino G., Espin-Basany E., Cotte E., Panel N., Goutard C. -A., de Angelis N., Lauka L., Shaikh S., Osborne L., Ramsay G., Nichita V. -I., Bhandari S., Sarmah P., Bethune R. M., Pringle H. C. M., Massey L., Fowler G. E., Hamid H. K. S., de Simone B. D., Kynaston J., Bradley N., Stienstra R. M., Gurjar S., Mukherjee T., Chandio A., Ahmed S., Singh B., Runau F., Chaudhri S., Siaw O., Sarveswaran J., Miu V., Ashmore D., Darwich H., Singh-Ranger D., Singh N., Shaban M., Gareb F., Petropolou T., Polydorou A., Dattani M., Afzal A., Bavikatte A., Sebastian B., Ward N., Mishra A., Manatakis D., Agalianos C., Tasis N., Antonopoulou M. -I., Karavokyros I., Charalabopoulos A., Schizas D., Baili E., Syllaios A., Karydakis L., Vailas M., Balalis D., Korkolis D., Plastiras A., Rompou A., Xenaki S., Xynos E., Chrysos E., Venianaki M., Christodoulidis G., Perivoliotis K., Tzovaras G., Baloyiannis I., Ho M. -F., Ng S. S., Mak T. W. -C., Futaba K., Santak G., Simlesa D., Cosic J., Zukanovic G., Kelly M. E., Larkin J. O., McCormick P. H., Mehigan B. J., Connelly T. M., Neary P., Ryan J., McCullough P., Al-Juaifari M. A., Hammoodi H., Abbood A. H., Calabro M., Muratore A., La Terra A., Farnesi F., Feo C. V., Fabbri N., Pesce A., Fazzin M., Roscio F., Clerici F., Lucchi A., Vittori L., Agostinelli L., Ripoli M. C., Sambucci D., Porta A., Sinibaldi G., Crescentini G., Larcinese A., Picone E., Persiani R., Biondi A., Pezzuto R., Lorenzon L., Rizzo G., Coco C., D'Agostino L., Spinelli A., Sacchi M. M., Carvello M., Foppa C., Maroli A., Palini G. M., Garulli G., Zanini N., Delrio P., Rega D., Carbone F., Aversano A., Pirozzolo G., Recordare A., D'Alimonte L., Vignotto C., Corbellini C., Sampietro G. M., Lorusso L., Manzo C. A., Ghignone F., Ugolini G., Montroni I., Pasini F., Ballabio M., Bisagni P., Armao F. T., Longhi M., Ghazouani O., Galleano R., Tamini N., Oldani M., Nespoli L., Picciariello A., Altomare D. F., Tomasicchio G., Lantone G., Catena F., Giuffrida M., Annicchiarico A., Perrone G., Grossi U., Santoro G. A., Zanus G., Iacomino A., Novello S., Passuello N., Zucchella M., Puca L., deGiuli M., Reddavid R., Scabini S., Aprile A., Soriero D., Fioravanti E., Rottoli M., Romano A., Tanzanu M., Belvedere A., Mariani N. M., Ceretti A. P., Opocher E., Gallo G., Sammarco G., de Paola G., Pucciarelli S., Marchegiani F., Spolverato G., Buzzi G., Di Saverio S., Meroni P., Parise C., Bottazzoli E. I., Lapolla P., Brachini G., Cirillo B., Mingoli A., Sica G., Siragusa L., Bellato V., Cerbo D., de Pasqual C. A., de Manzoni G., di Cosmo M. A., Alrayes B. M. H., Qandeel M. W. M., Hani M. B., Rabadi A., el Muhtaseb M. S., Abdeen B., Karmi F., Zilinskas J., Latkauskas T., Tamelis A., Pikuniene I., Slenfuktas V., Poskus T., Kryzauskas M., Jakubauskas M., Mikalauskas S., Jakubauskiene L., Hassan S. Y., Altrabulsi A., Abdulwahed E., Ghmagh R., Deeknah A., Alshareea E., Elhadi M., Abujamra S., Msherghi A. A., Tababa O. W. E., Majbar M. A., Souadka A., Benkabbou A., Mohsine R., Echiguer S., Moctezuma-Velazquez P., Salgado-Nesme N., Vergara-Fernandez O., Sainz-Hernandez J. C., Alvarez-Bautista F. E., Zakaria A. D., Zakaria Z., Wong M. P. K., Ismail R., Ibrahim A. F., Abdullah N. A. N., Julaihi R., Bhat S., O'Grady G., Bissett I., Lamme B., Musters G. D., Dinaux A. M., Grotenhuis B. A., Steller E. J., Aalbers A. G. J., Leeuwenburgh M. M., Rutten H. J. T., Burger J. W. A., Bloemen J. G., Ketelaers S. H. J., Waqar U., Chawla T., Rauf H., Rani P., Talsma A. K., Scheurink L., van Praagh J. B., Segelman J., Nygren J., Anderin K., Tiefenthal M., de Andres B., Beltran de Heredia J. P., Vazquez A., Gomez T., Golshani P., Kader R., Mohamed A., Westerterp M., Marinelli A., Niemer Q., Doornebosch P. G., Shapiro J., Vermaas M., de Graaf E. J. R., van Westreenen H. L., Zwakman M., van Dalsen A. D., Vles W. J., Nonner J., Toorenvliet B. R., Janssen P. T. J., Verdaasdonk E. G. G., Amelung F. J., Peeters K. C. M. J., Bahadoer R. R., Holman F. A., Heemskerk J., Vosbeek N., Leijtens J. W. A., Taverne S. B. M., Heijnen B. H. M., El-Massoudi Y., de Groot-Van Veen I., Hoff C., Jou-Valencia D., Consten E. C. J., Burghgraef T. A., Geitenbeek R., Hulshof L. G. W. L., Slooter G. D., Reudink M., Bouvy N. D., Wildeboer A. C. L., Verstappen S., Pennings A. J., van den Hengel B., Wijma A. G., de Haan J., de Nes L. C. F., Heesink V., Karsten T., Heidsma C. M., Koemans W. J., Dekker J. -W. T., van der Zijden C. J., Roos D., Demirkiran A., van der Burg S., Oosterling S. J., Hoogteijling T. J., Wiering B., Smeeing D. P. J., Havenga K., Lutfi H., Tsimogiannis K., Skoldberg F., Folkesson J., den Boer F., van Schaik T. G., van Gerven P., Sietses C., Hol J. C., Boerma E. -J. G., Creemers D. M. J., Schultz J. K., Frivold T., Riis R., Gregussen H., Busund S., Sjo O. H., Gaard M., Krohn N., Ersryd A. L., Leung E., Sultan H., Hajjaj B. N., Alhisi A. J., Khader A. A. E., Mendes A. F. D., Semiao M., Faria L. Q., Azevedo C., da Costa Devesa H. M., Martins S. F., Jarimba A. M. R., Marques S. M. R., Ferreira R. M., Oliveira A., Ferreira C., Pereira R., Surlin V. M., Graure G. M., Ramboiu S. P. S. D., Negoi I., Ciubotaru C., Stoica B., Tanase I., Negoita V. M., Florea S., Macau F., Vasile M., Stefanescu V., Dimofte G. -M., Lunca S., Roata C. -E., Musina A. -M., Garmanova T., Agapov M. N., Markaryan D. G., Eduard G., Yanishev A., Abelevich A., Bazaev A., Rodimov S. V., Filimonov V. B., Melnikov A. A., Suchkov I. A., Drozdov E. S., Kostromitskiy D. N., Sjostrom O., Matthiessen P., Baban B., Gadan S., Jadid K. D., Staffan M., Park J. M., Rydbeck D., Lydrup M. -L., Buchwald P., Jutesten H., Darlin L., Lindqvist E., Nilsson K., Larsson P. -A., Jangmalm S., Kosir J. A., Tomazic A., Grosek J., Bozic T. K., Zazo A., Zazo R., Fares H., Ayoub K., Niazi A., Mansour A., Abbas A., Tantoura M., Hamdan A., Hassan N., Hasan B., Saad A., Sebai A., Haddad A., Maghrebi H., Kacem M., Yalkin O., Samsa M. V., Atak I., Balci B., Haberal E., Dogan L., Gecim I. E., Akyol C., Koc M. A., Sivrikoz E., Piyadeoglu D., Avanagh D. O., Sokmen S., Bisgin T., Gunenc E., Guzel M., Leventoglu S., Yuksel O., Kozan R., Gobut H., Cengiz F., Erdinc K., Acar N. C., Kamer E., Ozgur I., Aydin O., Keskin M., Bulut M. T., Kulle C. B., Kara Y., Sibic O., Ozata I. H., Bugra D., Balik E., Cakir M., Alhardan A., Colak E., Aybar A. B. C., Sari A. C., Atici S. D., Kaya T., Dursun A., Calik B., Ozkan O. F., Ulgur H. S., Duzgun O., Monson J., George S., Woods K., Al-Eryani F., Albakry R., Coetzee E., Boutall A., Herman A., Warden C., Mugla N., Forgan T., Mia I., and Lambrechts A.

Abstract

Background: The optimal treatment of anastomotic leak after rectal cancer resection is unclear. This worldwide cohort study aimed to provide an overview of four treatment strategies applied. Methods: Patients from 216 centres and 45 countries with anastomotic leak after rectal cancer resection between 2014 and 2018 were included. Treatment was categorized as salvage surgery, faecal diversion with passive or active (vacuum) drainage, and no primary/secondary faecal diversion. The primary outcome was 1-year stoma-free survival. In addition, passive and active drainage were compared using propensity score matching (2: 1). Results: Of 2470 evaluable patients, 388 (16.0 per cent) underwent salvage surgery, 1524 (62.0 per cent) passive drainage, 278 (11.0 per cent) active drainage, and 280 (11.0 per cent) had no faecal diversion. One-year stoma-free survival rates were 13.7, 48.3, 48.2, and 65.4 per cent respectively. Propensity score matching resulted in 556 patients with passive and 278 with active drainage. There was no statistically significant difference between these groups in 1-year stoma-free survival (OR 0.95, 95 per cent c.i. 0.66 to 1.33), with a risk difference of -1.1 (95 per cent c.i. -9.0 to 7.0) per cent. After active drainage, more patients required secondary salvage surgery (OR 2.32, 1.49 to 3.59), prolonged hospital admission (an additional 6 (95 per cent c.i. 2 to 10) days), and ICU admission (OR 1.41, 1.02 to 1.94). Mean duration of leak healing did not differ significantly (an additional 12 (-28 to 52) days). Conclusion: Primary salvage surgery or omission of faecal diversion likely correspond to the most severe and least severe leaks respectively. In patients with diverted leaks, stoma-free survival did not differ statistically between passive and active drainage, although the increased risk of secondary salvage surgery and ICU admission suggests residual confounding.

Published
2023

6. Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention.

Author

Pollock, K., Bulli, F., Caswell, G., Kodba-Čeh, H., Lunder, U., Miccinesi, G., Seymour, J., Toccafondi, A., van Delden, J. J. M., Zwakman, M., Rietjens, J., van der Heide, A., and Kars, M.

Subjects
CAREGIVER attitudes, TERMINAL care, LIBERTY, BURDEN of care, PATIENTS' attitudes, ADVANCE directives (Medical care), TREATMENT effectiveness, QUALITATIVE research, RANDOMIZED controlled trials, RESPONSIBILITY, CANCER patients, DECISION making, RESEARCH funding, RESPECT
Abstract

Advance Care Planning (ACP) is widely regarded as a component of good end-of-life care. However, findings from a qualitative international study of patient and family caregiver attitudes and preferences regarding ACP highlight participants' ambivalence towards confronting the future and the factors underlying their motivation to accept or defer anticipatory planning. They show how ACP impacts on, and can be determined by, relationships between patients and their family caregivers. Although some patients may welcome the chance to engage in ACP a tendency towards either therapeutic optimism or fatalism can limit its perceived appeal or benefit. The focus on individual autonomy as an ethical principle underlying ACP does not resonate with real world settings. Many patients naturally orient to share responsibility and decision making within the network of significant others in which they are embedded, rather than exert unfettered freedom of 'choice'. [ABSTRACT FROM AUTHOR]

Published
2024
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7. Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

Author

Pollock, K., primary, Bulli, F., additional, Caswell, G., additional, Kodba-Čeh, H., additional, Lunder, U., additional, Miccinesi, G., additional, Seymour, J., additional, Toccafondi, A., additional, van Delden, J. J. M., additional, Zwakman, M., additional, Rietjens, J., additional, van der Heide, A., additional, and Kars, M., additional

Published
2022
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9. Missing not at random in end of life care studies

Author

Carreras G., Miccinesi G., Wilcock A., Preston N., Nieboer D., Deliens L., Groenvold M., Lunder U., van der Heide A., Baccini M., Korfage I. J., Rietjens J. A. C., Jabbarian L. J., Polinder S., van Delden H., Kars M., Zwakman M., Verkissen M. N., Eecloo K., Faes K., Pollock K., Seymour J., Caswell G., Bramley L., Payne S., Dunleavy L., Sowerby E., Bulli F., Ingravallo F., Toccafondi A., Gorini G., Cerv B., Simonic A., Mimic A., Kodba-Ceh H., Ozbic P., Arnfeldt C., Thit Johnsen A., Family Medicine and Chronic Care, End-of-life Care Research Group, Carreras G., Miccinesi G., Wilcock A., Preston N., Nieboer D., Deliens L., Groenvold M., Lunder U., van der Heide A., Baccini M., Korfage I.J., Rietjens J.A.C., Jabbarian L.J., Polinder S., van Delden H., Kars M., Zwakman M., Verkissen M.N., Eecloo K., Faes K., Pollock K., Seymour J., Caswell G., Bramley L., Payne S., Dunleavy L., Sowerby E., Bulli F., Ingravallo F., Toccafondi A., Gorini G., Cerv B., Simonic A., Mimic A., Kodba-Ceh H., Ozbic P., Arnfeldt C., Thit Johnsen A., and Public Health

Subjects
Advance care planning, Quality of life, Epidemiology, Missing data, MODELS, POWER, Health Informatics, Disease cluster, 01 natural sciences, law.invention, 010104 statistics & probability, 03 medical and health sciences, missing data, 0302 clinical medicine, Quality of life (healthcare), LUNG-CANCER, Randomized controlled trial, SDG 3 - Good Health and Well-being, law, QUALITY-OF-LIFE, Statistics, Medicine and Health Sciences, Humans, 030212 general & internal medicine, Imputation (statistics), 0101 mathematics, advance care planning, Quality Of Life, Terminal Care, lcsh:R5-920, Models, Statistical, RANDOM FOREST, MNAR, 3. Good health, Random forest, MICE, MAR, Action study, Oncology, Research Design, oncology, Psychology, lcsh:Medicine (General), Research Article
Abstract

Background Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. Methods Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations. Results Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption. Conclusions The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies.

Published
2021

10. Verwaarloosde Lijven

Author

Uden, J.C. van, Hiskes, A.R., and Zwakman, M.

Subjects
disability studies, organisational studies
Published
2021

11. Missing not at random in end of life care studies: multiple imputation and sensitivity analysis on data from the ACTION study

Author

Carreras, G. (Giulia), Miccinesi, G. (Guido), Wilcock, A. (Andrew), Preston, N.J. (Nancy J.), Nieboer, D. (Daan), Deliens, L. (Luc), Groenvold, M. (Mogensm), Lunder, U. (Urska), Heide, A. (Agnes) van der, Baccini, M. (Michela), Korfage, I.J. (Ida), Rietjens, J.A.C. (Judith), Jabbarian, L.J. (Lea), Polinder, S. (Suzanne), Delden, J.J.M. (Hans) van, Kars, M.C. (Marijke), Zwakman, M. (Marieke), Verkissen, M.N. (Mariëtte N.), Eecloo, K. (Kim), Faes, K. (Kristof), Pollock, K. (Kristian), Seymour, J. (Jane), Caswell, G. (Glenys), Bramley, L. (Louise), Payne, S. (Sheila), Dunleavy, L. (Lesley), Sowerby, E. (Eleanor), Bulli, F. (Francesco), Ingravallo, F. (Francesca), Toccafondi, A. (Alessandro), Gorini, G. (Giuseppe), Červ, B. (Branka), Simonič, A. (Anja), Mimić, A. (Alenka), Kodba-Čeh, H. (Hana), Ozbič, P. (Polona), Groenvold, M. (M.), Arnfeldt, C. (Caroline), Thit Johnsen, A. (Anna), Carreras, G. (Giulia), Miccinesi, G. (Guido), Wilcock, A. (Andrew), Preston, N.J. (Nancy J.), Nieboer, D. (Daan), Deliens, L. (Luc), Groenvold, M. (Mogensm), Lunder, U. (Urska), Heide, A. (Agnes) van der, Baccini, M. (Michela), Korfage, I.J. (Ida), Rietjens, J.A.C. (Judith), Jabbarian, L.J. (Lea), Polinder, S. (Suzanne), Delden, J.J.M. (Hans) van, Kars, M.C. (Marijke), Zwakman, M. (Marieke), Verkissen, M.N. (Mariëtte N.), Eecloo, K. (Kim), Faes, K. (Kristof), Pollock, K. (Kristian), Seymour, J. (Jane), Caswell, G. (Glenys), Bramley, L. (Louise), Payne, S. (Sheila), Dunleavy, L. (Lesley), Sowerby, E. (Eleanor), Bulli, F. (Francesco), Ingravallo, F. (Francesca), Toccafondi, A. (Alessandro), Gorini, G. (Giuseppe), Červ, B. (Branka), Simonič, A. (Anja), Mimić, A. (Alenka), Kodba-Čeh, H. (Hana), Ozbič, P. (Polona), Groenvold, M. (M.), Arnfeldt, C. (Caroline), and Thit Johnsen, A. (Anna)

Abstract

Background: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. Methods: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between k

Published
2021
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12. Unraveling patients’ readiness in advance care planning conversations:a qualitative study as part of the ACTION Study

Author

Zwakman, M., Milota, M. M., van der Heide, A., Jabbarian, L. J., Korfage, I. J., Rietjens, J. A.C., van Delden, J. J.M., Kars, M. C., Zwakman, M., Milota, M. M., van der Heide, A., Jabbarian, L. J., Korfage, I. J., Rietjens, J. A.C., van Delden, J. J.M., and Kars, M. C.

Abstract

Purpose: Patients’ readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals’ uncertainty about patients’ readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients’ readiness is expressed and develops throughout an ACP conversation. Methods: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. Results: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. Conclusion: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

Published
2021

13. Unraveling patients' readiness in advance care planning conversations: a qualitative study as part of the ACTION Study

Author

Medical Humanities Onderzoek Team 1, UMC Utrecht, Julius Centrum, Global Public Health & Bioethics, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Bioethics & Health Humanities, Palliatieve Zorg, Child Health, Cancer, JC onderzoeksprogramma Kanker, Zwakman, M, Milota, M M, Jabbarian, L J, Korfage, I J, Rietjens, J A C, van Delden, J J M, Kars, M C, Medical Humanities Onderzoek Team 1, UMC Utrecht, Julius Centrum, Global Public Health & Bioethics, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Bioethics & Health Humanities, Palliatieve Zorg, Child Health, Cancer, JC onderzoeksprogramma Kanker, Zwakman, M, Milota, M M, Jabbarian, L J, Korfage, I J, Rietjens, J A C, van Delden, J J M, and Kars, M C

Published
2021

14. Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial

Author

Korfage, I.J. (Ida), Carreras, G., Arnfeldt Christensen, C.M., Billekens, P, Bramley, L., Briggs, L., Bulli, F, Caswell, G, Červ, B., Delden, J.J.M., Deliens, L. (Luc), Dunleavy, L, Eecloo, K., Gorini, G, Groenvold, M. (M.), Hammes, B., Ingravallo, F, Jabbarian, L.J. (Lea), Kars, MC, Kodba-Čeh, H., Lunder, U, Miccinesi, G. (Guido), Mimić, A., Ozbič, P., Seymour, J. (Jane), Simonič, A., Johnsen, AT, Toccafondi, A., Payne, SA, Polinder, S. (Suzanne), Pollock, K, Preston, NJ, Verkissen, MN, Wilcock, A, Zwakman, M, van derHeide, A., Rietjens, J.A.C. (Judith), Korfage, I.J. (Ida), Carreras, G., Arnfeldt Christensen, C.M., Billekens, P, Bramley, L., Briggs, L., Bulli, F, Caswell, G, Červ, B., Delden, J.J.M., Deliens, L. (Luc), Dunleavy, L, Eecloo, K., Gorini, G, Groenvold, M. (M.), Hammes, B., Ingravallo, F, Jabbarian, L.J. (Lea), Kars, MC, Kodba-Čeh, H., Lunder, U, Miccinesi, G. (Guido), Mimić, A., Ozbič, P., Seymour, J. (Jane), Simonič, A., Johnsen, AT, Toccafondi, A., Payne, SA, Polinder, S. (Suzanne), Pollock, K, Preston, NJ, Verkissen, MN, Wilcock, A, Zwakman, M, van derHeide, A., and Rietjens, J.A.C. (Judith)

Abstract

Background Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. Methods and findings To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015–2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0–3, and at least 3 months lif

Published
2020
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15. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Author

Zwakman, M., van Delden, J. J. M., Caswell, G., Deliens, L., Ingravallo, F., Jabbarian, L. J., Johnsen, A. T., Korfage, I. J., Mimic, A., Arnfeldt, C. Moller, Preston, N., Kars, M. C., van der Heide, A., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Verkissen, M. N., Eecloo, K., Faes, K., Pollock, K., Seymour, J., Wilcock, A., Bramley, L., Payne, S., Dunleavy, L., Sowerby, E., Miccinesi, G., Bulli, F., Carreras, G., Toccafondi, A., Gorini, G., Lunder, U., Cerv, B., Simonic, A., Ceh, H. Kodba, Ozbic, P., Groenvold, M., Zwakman, M., van Delden, J. J. M., Caswell, G., Deliens, L., Ingravallo, F., Jabbarian, L. J., Johnsen, A. T., Korfage, I. J., Mimic, A., Arnfeldt, C. Moller, Preston, N., Kars, M. C., van der Heide, A., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Verkissen, M. N., Eecloo, K., Faes, K., Pollock, K., Seymour, J., Wilcock, A., Bramley, L., Payne, S., Dunleavy, L., Sowerby, E., Miccinesi, G., Bulli, F., Carreras, G., Toccafondi, A., Gorini, G., Lunder, U., Cerv, B., Simonic, A., Ceh, H. Kodba, Ozbic, P., and Groenvold, M.

Published
2020

16. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Author

Zwakman, M, van Delden, JJ, Caswell, G, Deliens, L, Ingravallo, F, Jabbarian, Lea, Johnsen, AT, Korfage, Ida, Mimic, A, Arnfeldt, CAM, Preston, NJ, Kars, MC, Zwakman, M, van Delden, JJ, Caswell, G, Deliens, L, Ingravallo, F, Jabbarian, Lea, Johnsen, AT, Korfage, Ida, Mimic, A, Arnfeldt, CAM, Preston, NJ, and Kars, MC

Published
2020

17. Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial

Author

Korfage, Ida, Carreras, G, Arnfeldt Christensen, CM, Billekens, P, Bramley, L, Briggs, L, Bulli, F, Caswell, G, ?erv, B, Delden, JJM, Deliens, L, Dunleavy, L, Eecloo, K, Gorini, G, Groenvold, M, Hammes, B, Ingravallo, F, Jabbarian, Lea, Kars, MC, Kodba-?eh, H, Lunder, U, Miccinesi, G, Mimi?, A, Ozbi?, P, Seymour, J, Simoni?, A, Johnsen, AT, Toccafondi, A, Payne, SA, Polinder, Suzanne, Pollock, K, Preston, NJ, Verkissen, MN, Wilcock, A, Zwakman, M, van der Heide, Agnes, Rietjens, Judith, Korfage, Ida, Carreras, G, Arnfeldt Christensen, CM, Billekens, P, Bramley, L, Briggs, L, Bulli, F, Caswell, G, ?erv, B, Delden, JJM, Deliens, L, Dunleavy, L, Eecloo, K, Gorini, G, Groenvold, M, Hammes, B, Ingravallo, F, Jabbarian, Lea, Kars, MC, Kodba-?eh, H, Lunder, U, Miccinesi, G, Mimi?, A, Ozbi?, P, Seymour, J, Simoni?, A, Johnsen, AT, Toccafondi, A, Payne, SA, Polinder, Suzanne, Pollock, K, Preston, NJ, Verkissen, MN, Wilcock, A, Zwakman, M, van der Heide, Agnes, and Rietjens, Judith

Published
2020

20. OP13 Evaluating experiences of advance care planning facilitators: results from the international ACTION study

Author

Christensen, CA, primary, Adsersen, M, additional, Johnsen, AT, additional, Seymour, J, additional, Bulli, F, additional, Cerv, B, additional, Deliens, L, additional, Van der Heide, A, additional, Korfage, I, additional, Lunder, U, additional, Pollock, K, additional, Preston, NJ, additional, Verkissen, MN, additional, Zwakman, M, additional, and Groenvold, M, additional

Published
2019
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22. Trained facilitators' experiences with structured advance care planning conversations in oncology

Author

Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., van der Heide, A., Jabbarian, L. J., Koba-Ceh, H., Lunder, U., Miccinesi, G., Arnfeldt, C. A. Moller, Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., Korfage, I. J., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Eecloo, K., Faes, K., Wilcock, A., Bramley, L., Payne, S., Preston, N., Dunleavy, L., Sowerby, E., Ingravallo, F., Carreras, G., Gorini, G., Simonic, A., Mimic, A., Ceh, H. Kodba, Ozbic, P., Grønvold, M., Johnsen, A. Thit, Family Medicine and Chronic Care, End-of-life Care Research Group, Faculty of Medicine and Pharmacy, and Public Health

Subjects
Oncology, Advance care planning, Cancer Research, Lung Neoplasms, Experiences, pomočnik pri načrtovanju oskrbe, Emotions, ACTION study, respecting choices, Medical Oncology, GOALS, patients, 0302 clinical medicine, experience, Cultural diversity, Adaptation, Psychological, Health care, rak, Medicine and Health Sciences, facilitator, 030212 general & internal medicine, media_common, Cancer, Facilitator, Communication, Professional-Patient Relations, Focus Groups, bolniki, GENERAL-PRACTITIONERS, lcsh:Neoplasms. Tumors. Oncology. Including cancer and carcinogens, 3. Good health, Europe, 030220 oncology & carcinogenesis, raziskava ACTION, spoštovanje odločitev, Colorectal Neoplasms, Psychology, Life Sciences & Biomedicine, Research Article, medicine.medical_specialty, Health Personnel, media_common.quotation_subject, education, Self-concept, lcsh:RC254-282, 03 medical and health sciences, PEOPLE, Internal medicine, Respecting choices, medicine, Genetics, Journal Article, Humans, udc:614.2, cancer, Conversation, Science & Technology, izkušnje, BARRIERS, business.industry, Focus group, Self Concept, business, Qualitative research
Abstract

Background In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation. Methods A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes. Results Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script. Conclusions Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients’ preferences while staying attuned to patients’ needs. Trial registration International Standard Randomised Controlled Trial Number registry 63110516 (ISRCTN63110516) per 10/3/2014.

Published
2019

23. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Author

Zwakman, M. (Marieke), van Delden, J.J.M. (J. J.M.), Caswell, G. (Glenys), Deliens, L. (Luc), Ingravallo, F. (Francesca), Jabbarian, L.J. (Lea), Johnsen, A.T. (Anna Thit), Korfage, I.J. (I. J.), Mimić, A. (Alenka), Arnfeldt, C.M. (C. Møller), Preston, N.J. (Nancy J.), Kars, M.C. (M. C.), Heide, A. (Agnes) van der, Korfage, I.J. (Ida), Rietjens, J.A.C. (Judith), Jabbarian, L.J. (L. J.), Polinder, S. (Suzanne), Billekens, P. (Pascalle), Delden, J.J.M. (Hans) van, Kars, M.C. (Marijke), Deliens, L. (L.), Verkissen, M.N. (Mariëtte N.), Eecloo, K. (K.), Faes, K. (K.), Pollock, K. (Kristian), Seymour, J. (J.), Caswell, G. (G.), Wilcock, A. (Andrew), Bramley, L. (L.), Payne, S. (Sheila), Preston, N. (N.), Dunleavy, L. (Lesley), Sowerby, E. (E.), Miccinesi, G. (Guido), Bulli, F. (F.), Ingravallo, F. (F.), Carreras, G. (G.), Toccafondi, A. (A.), Gorini, G. (G.), Lunder, U. (Urska), Červ, B. (Branka), Simonič, A. (Anja), Mimić, A. (A.), Čeh, H.K. (H. Kodba), Ozbič, P. (P.), Groenvold, M. (M.), Johnsen, A.T. (A. Thit), Zwakman, M. (Marieke), van Delden, J.J.M. (J. J.M.), Caswell, G. (Glenys), Deliens, L. (Luc), Ingravallo, F. (Francesca), Jabbarian, L.J. (Lea), Johnsen, A.T. (Anna Thit), Korfage, I.J. (I. J.), Mimić, A. (Alenka), Arnfeldt, C.M. (C. Møller), Preston, N.J. (Nancy J.), Kars, M.C. (M. C.), Heide, A. (Agnes) van der, Korfage, I.J. (Ida), Rietjens, J.A.C. (Judith), Jabbarian, L.J. (L. J.), Polinder, S. (Suzanne), Billekens, P. (Pascalle), Delden, J.J.M. (Hans) van, Kars, M.C. (Marijke), Deliens, L. (L.), Verkissen, M.N. (Mariëtte N.), Eecloo, K. (K.), Faes, K. (K.), Pollock, K. (Kristian), Seymour, J. (J.), Caswell, G. (G.), Wilcock, A. (Andrew), Bramley, L. (L.), Payne, S. (Sheila), Preston, N. (N.), Dunleavy, L. (Lesley), Sowerby, E. (E.), Miccinesi, G. (Guido), Bulli, F. (F.), Ingravallo, F. (F.), Carreras, G. (G.), Toccafondi, A. (A.), Gorini, G. (G.), Lunder, U. (Urska), Červ, B. (Branka), Simonič, A. (Anja), Mimić, A. (A.), Čeh, H.K. (H. Kodba), Ozbič, P. (P.), Groenvold, M. (M.), and Johnsen, A.T. (A. Thit)

Abstract

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that ‘maintaining normal life’ and ‘experiencing meaningful relationships’ were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred ‘home’ as final place of care. Conclusions: My Preferences forms provide some insights into patients’ perspectives and preferences. However, understanding the reasoning behind preferences requires conversations

Published
2019
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24. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention:insights gained from the ACTION trial

Author

Zwakman, M, van Delden, Johannes J. M., Caswell, Glenys, Deliens, Luc, Ingravallo, Francesca, jabbarian, Lea, Johnsoen, Anna, Korfage, Ida J, Mimić, A, Arnfeldt, Caroline, Preston, Nancy, Kars, M, Zwakman, M, van Delden, Johannes J. M., Caswell, Glenys, Deliens, Luc, Ingravallo, Francesca, jabbarian, Lea, Johnsoen, Anna, Korfage, Ida J, Mimić, A, Arnfeldt, Caroline, Preston, Nancy, and Kars, M

Abstract

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that ‘maintaining normal life’ and ‘experiencing meaningful relationships’ were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred ‘home’ as final place of care. Conclusions: My Preferences forms provide some insights into patients’ perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients.

Published
2019

25. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trial

Author

Zwakman, M, van Delden, Johannes J. M., Caswell, Glenys, Deliens, Luc, Ingravallo, Francesca, jabbarian, Lea, Johnsoen, Anna, Korfage, Ida J, Mimić, A, Arnfeldt, Caroline, Preston, Nancy, Kars, M, Zwakman, M, van Delden, Johannes J. M., Caswell, Glenys, Deliens, Luc, Ingravallo, Francesca, jabbarian, Lea, Johnsoen, Anna, Korfage, Ida J, Mimić, A, Arnfeldt, Caroline, Preston, Nancy, and Kars, M

Abstract

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that ‘maintaining normal life’ and ‘experiencing meaningful relationships’ were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred ‘home’ as final place of care. Conclusions: My Preferences forms provide some insights into patients’ perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients.

Published
2019

26. Trained facilitators' experiences with structured advance care planning conversations in oncology:an international focus group study within the ACTION trial

Author

Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., van der Heide, A., Jabbarian, L. J., Koba-Ceh, H., Lunder, U., Miccinesi, G., Arnfeldt, C. A. Moller, Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., Korfage, I. J., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Eecloo, K., Faes, K., Wilcock, A., Bramley, L., Payne, S., Preston, N., Dunleavy, L., Sowerby, E., Ingravallo, F., Carreras, G., Gorini, G., Simonic, A., Mimic, A., Ceh, H. Kodba, Ozbic, P., Grønvold, M., Johnsen, A. Thit, Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., van der Heide, A., Jabbarian, L. J., Koba-Ceh, H., Lunder, U., Miccinesi, G., Arnfeldt, C. A. Moller, Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., Korfage, I. J., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Eecloo, K., Faes, K., Wilcock, A., Bramley, L., Payne, S., Preston, N., Dunleavy, L., Sowerby, E., Ingravallo, F., Carreras, G., Gorini, G., Simonic, A., Mimic, A., Ceh, H. Kodba, Ozbic, P., Grønvold, M., and Johnsen, A. Thit

Published
2019

27. Trained facilitators' experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial

Author

Zwakman, M, Pollock, K, Bulli, F, Caswell, G, Cerv, B, van Delden, JJ, Deliens, L, van der Heide, Agnes, Jabbarian, Lea, Koba-Ceh, H, Lunder, U, Miccinesi, G, Arnfeldt, CAM, Seymour, J, Toccafondi, A, Verkissen, MN, Kars, MC, Zwakman, M, Pollock, K, Bulli, F, Caswell, G, Cerv, B, van Delden, JJ, Deliens, L, van der Heide, Agnes, Jabbarian, Lea, Koba-Ceh, H, Lunder, U, Miccinesi, G, Arnfeldt, CAM, Seymour, J, Toccafondi, A, Verkissen, MN, and Kars, MC

Published
2019

29. Advance care planning for patients with chronic respiratory diseases: A systematic review of preferences and practices

Author

Jabbarian, L.J. (Lea), Zwakman, M. (Marieke), Heide, A. (Agnes) van der, Kars, M.C. (Marijke), Janssen, D.J.A. (Daisy), Delden, J.J.M. (Hans) van, Rietjens, J.A.C. (Judith), Korfage, I.J. (Ida), Jabbarian, L.J. (Lea), Zwakman, M. (Marieke), Heide, A. (Agnes) van der, Kars, M.C. (Marijke), Janssen, D.J.A. (Daisy), Delden, J.J.M. (Hans) van, Rietjens, J.A.C. (Judith), and Korfage, I.J. (Ida)

Abstract

Background Advance care planning (ACP) supports patients in identifying and documenting their preferences and timely discussing them with their relatives and healthcare professionals (HCPs). Since the British Thoracic Society encourages ACP in chronic respiratory disease, the objective was to systematically review ACP practice in chronic respiratory disease, attitudes of patients and HCPs and barriers and facilitators related to engagement in ACP. Methods We systematically searched 12 electronic databases for empirical studies on ACP in adults with chronic respiratory diseases. Identified studies underwent full review and data extraction. Results Of 2509 studies, 21 were eligible: 10 were quantitative studies. Although a majority of patients was interested in engaging in ACP, ACP was rarely carried out. Many HCPs acknowledged the importance of ACP but were hesitant to initiate it. Barriers to engagement in ACP were the complex disease course of patients with chronic respiratory diseases, HCPs' concern of taking away patients' hopes and lack of continuity of care. The identification of trigger points and training of HCPs on how to communicate sensitive topics were identified as facilitators to engagement in ACP. Conclusions In conclusion, ACP is surprisingly uncommon in chronic respiratory disease, possibly due to the complex disease course of chronic respiratory diseases and ambivalence of both patients and HCPs to engage in ACP. Providing patients with information about their disease can help meeting their needs. Addition

Published
2018
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30. Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Zwakman, M. (Marieke), Jabbarian, L.J. (Lea), Delden, J.J.M. (Hans) van, Heide, A. (Agnes) van der, Korfage, I.J. (Ida), Pollock, K. (Kristian), Rietjens, J.A.C. (Judith), Seymour, J. (Jane), Kars, M.C. (Marijke), Zwakman, M. (Marieke), Jabbarian, L.J. (Lea), Delden, J.J.M. (Hans) van, Heide, A. (Agnes) van der, Korfage, I.J. (Ida), Pollock, K. (Kristian), Rietjens, J.A.C. (Judith), Seymour, J. (Jane), and Kars, M.C. (Marijke)

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. R

Published
2018
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31. Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Medical Humanities Onderzoek Team 1, JC onderzoeksprogramma Kanker, Global Public Health & Bioethics, Cancer, Zwakman, M, Jabbarian, L J, van Delden, Jjm, van der Heide, A, Korfage, I J, Pollock, K, Rietjens, Jac, Seymour, J, Kars, M C, Medical Humanities Onderzoek Team 1, JC onderzoeksprogramma Kanker, Global Public Health & Bioethics, Cancer, Zwakman, M, Jabbarian, L J, van Delden, Jjm, van der Heide, A, Korfage, I J, Pollock, K, Rietjens, Jac, Seymour, J, and Kars, M C

Published
2018

32. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial.

Author

Zwakman, Marieke, van Delden, J. J. M., Caswell, G., Deliens, L., Ingravallo, F., Jabbarian, L. J., Johnsen, A. T., Korfage, I. J., Mimić, A., Arnfeldt, C. Møller, Preston, N. J., Kars, M. C., On behalf of the ACTION consortium, van der Heide, A., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Zwakman, M., Verkissen, M. N., and Eecloo, K.

Subjects
CONTENT analysis, CANCER patients, PATIENT decision making, MEDICAL personnel, QUALITY of life, MENTAL health, TUMOR treatment, ADVANCE directives (Medical care), DECISION making, COMMUNICATION, RESEARCH funding
Abstract

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations.Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention.Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care.Conclusions: My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients. [ABSTRACT FROM AUTHOR]

Published
2020
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34. Advance care planning - a multi-centre cluster randomised clinical trial: The research protocol of the ACTION study

Author

Rietjens, J.A.C. (Judith), Korfage, I.J. (Ida), Dunleavy, L. (Lesley), Preston, N.J. (Nancy J.), Jabbarian, L.J. (Lea), Christensen, C.A. (Caroline Arnfeldt), de Brito, M. (Maja), Bulli, F. (Francesco), Caswell, G. (Glenys), Červ, B. (Branka), Delden, J.J.M. (Hans) van, Deliens, L. (Luc), Gorini, G. (Giuseppe), Groenvold, M. (M.), Houttekier, D. (Dirk), Ingravallo, F. (Francesca), Kars, M.C. (Marijke), Lunder, U. (Urska), Miccinesi, G. (Guido), Mimić, A. (Alenka), Paci, E. (Eugenio), Payne, S. (S.), Polinder, S. (Suzanne), Pollock, K. (Kristian), Seymour, J. (Jane), Simonič, A. (Anja), Johnsen, A.T. (Anna Thit), Verkissen, M.N. (Mariëtte N.), Vries, E.G.E. (Elisabeth) de, Wilcock, A. (Andrew), Zwakman, M. (Marieke), Heide, A. (Agnes) van der, Rietjens, J.A.C. (Judith), Korfage, I.J. (Ida), Dunleavy, L. (Lesley), Preston, N.J. (Nancy J.), Jabbarian, L.J. (Lea), Christensen, C.A. (Caroline Arnfeldt), de Brito, M. (Maja), Bulli, F. (Francesco), Caswell, G. (Glenys), Červ, B. (Branka), Delden, J.J.M. (Hans) van, Deliens, L. (Luc), Gorini, G. (Giuseppe), Groenvold, M. (M.), Houttekier, D. (Dirk), Ingravallo, F. (Francesca), Kars, M.C. (Marijke), Lunder, U. (Urska), Miccinesi, G. (Guido), Mimić, A. (Alenka), Paci, E. (Eugenio), Payne, S. (S.), Polinder, S. (Suzanne), Pollock, K. (Kristian), Seymour, J. (Jane), Simonič, A. (Anja), Johnsen, A.T. (Anna Thit), Verkissen, M.N. (Mariëtte N.), Vries, E.G.E. (Elisabeth) de, Wilcock, A. (Andrew), Zwakman, M. (Marieke), and Heide, A. (Agnes) van der

Abstract

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. Methods/Design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. Discussion: Transferring the concept of ACP from care

Published
2016
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35. Advance care planning - a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study

Author

Rietjens, Judith, Korfage, Ida, Dunleavy, L, Preston, NJ, Jabbarian, Lea, Christensen, CA, de Brito, M, Bulli, F, Caswell, G, Cerv, B, van Delden, J, Deliens, L, Gorini, G, Groenvold, M, Houttekier, D, Ingravallo, F, Kars, MC, Lunder, U, Miccinesi, G, Mimic, A, Paci, E, Payne, S, Polinder, Suzanne, Pollock, K, Seymour, J, Simonic, A, Johnsen, AT, Verkissen, MN, Vries, Esther, Wilcock, A, Zwakman, M, van der Heide, Agnes, Rietjens, Judith, Korfage, Ida, Dunleavy, L, Preston, NJ, Jabbarian, Lea, Christensen, CA, de Brito, M, Bulli, F, Caswell, G, Cerv, B, van Delden, J, Deliens, L, Gorini, G, Groenvold, M, Houttekier, D, Ingravallo, F, Kars, MC, Lunder, U, Miccinesi, G, Mimic, A, Paci, E, Payne, S, Polinder, Suzanne, Pollock, K, Seymour, J, Simonic, A, Johnsen, AT, Verkissen, MN, Vries, Esther, Wilcock, A, Zwakman, M, and van der Heide, Agnes

Abstract

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. Methods/Design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. Discussion: Transferring the concept of ACP from care

Published
2016

36. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., Kars, M.C., Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., and Kars, M.C.

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

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37. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., Kars, M.C., Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., and Kars, M.C.

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

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38. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., Kars, M.C., Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., and Kars, M.C.

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

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39. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., Kars, M.C., Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., and Kars, M.C.

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

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40. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., Kars, M.C., Zwakman, M., Jabbarian, L.J., van Delden, J.J.M., van der Heide, A., Korfage, I.J., Pollock, K., Rietjens, J.A.C., Seymour, J., and Kars, M.C.

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. ‘Readiness’ for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. ‘Openness’ refers to patients’ need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

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41. Advance Care Planning: A Retrospective Audit in a National Referral Center for Interstitial Lung Diseases.

Author

Trapman L, Zwakman M, de Graaf E, Dijksman LM, Grutters JC, and Teunissen SCCM

Abstract

Background: Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP)., Objective: To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF., Methods: A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed., Results: The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns., Conclusion: The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Published
2024
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42. Surgical techniques for mesenteric lengthening in ileoanal pouch surgery: a systematic review.

Author

Zwakman M, Hentzen JEKR, Jonker JE, Krikke C, Lange JFM, and Hofker SHS

Subjects
Adult, Humans, Anastomosis, Surgical methods, Retrospective Studies, Postoperative Complications surgery, Proctocolectomy, Restorative methods, Colonic Pouches, Colitis, Ulcerative surgery
Abstract

Aim: The key to successful construction of an ileal pouch-anal anastomosis (IPAA) following proctocolectomy in patients with ulcerative colitis or familial adenomatous polyposis is the ability of the pouch reservoir to reach the anus well vascularized and without tension. The aim of this systematic review was to provide an overview of previously described different surgical lengthening techniques to achieve adequate length for a tension-free IPAA., Method: Pubmed, Embase and Cochrane Library databases were systematically searched. Two reviewers conducted a systematic search with combinations of keywords for the surgical procedure and surgical lengthening techniques. All publications that reported one or more surgical lengthening techniques during IPAA surgery in adult patients were selected, consisting of reviews, cohort studies, case reports, human cadaver studies and expert opinions. The primary outcomes measured were the different surgical lengthening techniques and the step-by-step approach they involve that can be used during surgery to achieve adequate length for an IPAA., Results: Of 1577 records reviewed, 19 articles were included in this systematic review describing at least 1181 patients (i.e. one review, four retrospective studies, five human cadaver studies, two case reports and seven expert opinions). A total of six different surgical lengthening techniques with various subtechniques were found and described, consisting of pouch folding, construction of different types of pouches, stepladder incisions, skeletonization of vessels, division and ligation of mesenteric vessels and using an interposition vein graft. No prospective or randomized controlled trials were performed regarding this topic. Quality assessment showed a medium quality of the included studies., Conclusion: Different surgical lengthening techniques are described in a step-by-step approach to create adequate mesenteric length during IPAA surgery, in patients in whom the ileal pouch cannot reach the dentate line., (© 2023 University Medical Center Groningen. Colorectal Disease published by John Wiley & Sons Ltd on behalf of Association of Coloproctology of Great Britain and Ireland.)

Published
2023
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43. Impacts of an advance care planning intervention on close relationships.

Author

Bulli F, Toccafondi A, Kars MC, Caswell G, Kodba-Čeh H, Lunder U, Pollock K, Seymour J, van Delden JJM, Zwakman M, Korfage IJ, Van der Heide A, and Miccinesi G

Abstract

Objectives: To examine how an advance care planning (ACP) intervention based on structured conversations impacts the relationship between patients with advanced cancer and their nominated Personal Representatives (PRs)., Methods: Within the ACTION research project, a qualitative study was carried out in 4 countries (Italy, United Kingdom, the Netherlands, and Slovenia) to explore the lived experience of engagement with the ACTION Respecting Choices ® ACP intervention from the perspectives of patients and their PRs. A phenomenological approach was undertaken., Results: Our findings show that taking part in the ACTION ACP intervention provides a communicative space for patients and their PRs to share their understanding and concerns about the illness and its consequences. In some cases, this may strengthen relationships by realigning patients' and PRs' understanding and expectations and affirming their mutual commitment and support., Significance of Results: The most significant consequence of the ACP process in our study was the deepening of mutual understanding and relationship between some patients and PRs and the enhancement of their sense of mutuality and connectedness in the present. However, being a relational intervention, ACP may raise some challenging and distressing issues. The interpersonal dynamics of the discussion require skilled and careful professional facilitation.

Published
2023
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44. How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

Author

Kodba-Čeh H, Lunder U, Bulli F, Caswell G, van Delden JJM, Kars MC, Korfage IJ, Miccinesi G, Rietjens JAC, Seymour J, Toccafondi A, Zwakman M, and Pollock K

Subjects
Humans, Qualitative Research, Communication, United Kingdom, Advance Care Planning, Neoplasms therapy
Abstract

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope., Methods: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question., Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments., Conclusion: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Published
2022
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45. Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

Author

Korfage IJ, Carreras G, Arnfeldt Christensen CM, Billekens P, Bramley L, Briggs L, Bulli F, Caswell G, Červ B, van Delden JJM, Deliens L, Dunleavy L, Eecloo K, Gorini G, Groenvold M, Hammes B, Ingravallo F, Jabbarian LJ, Kars MC, Kodba-Čeh H, Lunder U, Miccinesi G, Mimić A, Ozbič P, Payne SA, Polinder S, Pollock K, Preston NJ, Seymour J, Simonič A, Thit Johnsen A, Toccafondi A, Verkissen MN, Wilcock A, Zwakman M, van der Heide A, and Rietjens JAC

Subjects
Adaptation, Psychological, Adolescent, Adult, Advance Directives, Aged, Aged, 80 and over, Belgium, Communication, Decision Making physiology, Denmark, Female, Humans, Italy, Male, Middle Aged, Netherlands, Quality of Life psychology, Slovenia, United Kingdom, Young Adult, Advance Care Planning, Neoplasms diagnosis, Neoplasms therapy, Patient Participation statistics & numerical data, Patient-Centered Care
Abstract

Background: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce., Methods and Findings: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals., Conclusions: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed., Trial Registration: ISRCTN registry ISRCTN63110516., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: BH and LB are developers of Respecting Choices and report personal fees from Gundersen Health, outside the submitted work.

Published
2020
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46. Trained facilitators' experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial.

Author

Zwakman M, Pollock K, Bulli F, Caswell G, Červ B, van Delden JJM, Deliens L, van der Heide A, Jabbarian LJ, Koba-Čeh H, Lunder U, Miccinesi G, Arnfeldt CAM, Seymour J, Toccafondi A, Verkissen MN, and Kars MC

Subjects
Adaptation, Psychological, Colorectal Neoplasms psychology, Communication, Emotions, Europe, Humans, Lung Neoplasms psychology, Self Concept, Advance Care Planning, Focus Groups methods, Health Personnel education, Medical Oncology methods, Professional-Patient Relations
Abstract

Background: In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation., Methods: A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes., Results: Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script., Conclusions: Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients' preferences while staying attuned to patients' needs., Trial Registration: International Standard Randomised Controlled Trial Number registry 63110516 ( ISRCTN63110516 ) per 10/3/2014.

Published
2019
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47. Patients' perspectives on the COPD-GRIP intervention, a new nursing care intervention for COPD.

Author

Zwakman M, Weldam SWM, Vervoort SCJM, Lammers JJ, and Schuurmans MJ

Subjects
Adult, Female, Humans, Male, Middle Aged, Practice Patterns, Nurses', Qualitative Research, Randomized Controlled Trials as Topic, Attitude to Health, Pulmonary Disease, Chronic Obstructive nursing, Quality of Life
Abstract

Background: The nurse-led chronic obstructive pulmonary disease-Guidance Research on Illness Perception (COPD-GRIP) intervention was developed to incorporate illness perceptions into COPD care with the intention to improve the health-related quality of life of COPD patients. This individualized intervention focuses on identifying, discussing and evaluating illness perceptions and consists of three consultations with a practice nurse. The aim of this study is to explore patients' experiences regarding the COPD-GRIP intervention., Methods: A qualitative interview study nested in a cluster randomized trial in primary care. One-time semi-structured individual interviews with COPD patients who were guided with the COPD-GRIP intervention were conducted. During data collection, the constant comparative approach was used. All interviews were recorded, transcribed, anonymized and uploaded to MAXQDA. To identify themes, the transcripts were independently coded by two researchers., Results: Sixteen patients were interviewed. All patients were positive and experienced an additional value of the COPD-GRIP intervention in different areas. Three main themes were identified and show that taking part in this intervention made the patients feel 'listened to and acknowledged', improved their awareness of the disease and its management and helped them to make lifestyle changes. Some patients suggested that the individualized care plan could be improved and to start the intervention immediately after being informed of the COPD diagnosis. All patients recommended this intervention., Conclusion: The results of this study indicate that patients acknowledge that the COPD-GRIP intervention is a useful and promising tool for providing individualized COPD care.

Published
2019
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48. Introducing PALETTE: an iterative method for conducting a literature search for a review in palliative care.

Author

Zwakman M, Verberne LM, Kars MC, Hooft L, van Delden JJM, and Spijker R

Subjects
Review Literature as Topic, Information Storage and Retrieval methods, Palliative Care
Abstract

Background: In the rapidly developing specialty of palliative care, literature reviews have become increasingly important to inform and improve the field. When applying widely used methods for literature reviews developed for intervention studies onto palliative care, challenges are encountered such as the heterogeneity of palliative care in practice (wide range of domains in patient characteristics, stages of illness and stakeholders), the explorative character of review questions, and the poorly defined keywords and concepts. To overcome the challenges and to provide guidance for researchers to conduct a literature search for a review in palliative care, Palliative cAre Literature rEview iTeraTive mEthod (PALLETE), a pragmatic framework, was developed. We assessed PALETTE with a detailed description., Methods: PALETTE consists of four phases; developing the review question, building the search strategy, validating the search strategy and performing the search. The framework incorporates different information retrieval techniques: contacting experts, pearl growing, citation tracking and Boolean searching in a transparent way to maximize the retrieval of literature relevant to the topic of interest. The different components and techniques are repeated until no new articles are qualified for inclusion. The phases within PALETTE are interconnected by a recurrent process of validation on 'golden bullets' (articles that undoubtedly should be part of the review), citation tracking and concept terminology reflecting the review question. To give insight in the value of PALETTE, we compared PALETTE with the recommended search method for reviews of intervention studies., Results: By using PALETTE on two palliative care literature reviews, we were able to improve our review questions and search strategies. Moreover, in comparison with the recommended search for intervention reviews, the number of articles needed to be screened was decreased whereas more relevant articles were retrieved. Overall, PALETTE helped us in gaining a thorough understanding of the topic of interest and made us confident that the included studies comprehensively represented the topic., Conclusions: PALETTE is a coherent and transparent pragmatic framework to overcome the challenges of performing a literature review in palliative care. The method enables researchers to improve question development and to maximise both sensitivity and precision in their search process.

Published
2018
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49. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices.

Author

Jabbarian LJ, Zwakman M, van der Heide A, Kars MC, Janssen DJA, van Delden JJ, Rietjens JAC, and Korfage IJ

Subjects
Adult, Chronic Disease, Humans, Physician-Patient Relations, Advance Care Planning, Health Knowledge, Attitudes, Practice, Practice Patterns, Physicians', Respiration Disorders therapy
Abstract

Background: Advance care planning (ACP) supports patients in identifying and documenting their preferences and timely discussing them with their relatives and healthcare professionals (HCPs). Since the British Thoracic Society encourages ACP in chronic respiratory disease, the objective was to systematically review ACP practice in chronic respiratory disease, attitudes of patients and HCPs and barriers and facilitators related to engagement in ACP., Methods: We systematically searched 12 electronic databases for empirical studies on ACP in adults with chronic respiratory diseases. Identified studies underwent full review and data extraction., Results: Of 2509 studies, 21 were eligible: 10 were quantitative studies. Although a majority of patients was interested in engaging in ACP, ACP was rarely carried out. Many HCPs acknowledged the importance of ACP but were hesitant to initiate it. Barriers to engagement in ACP were the complex disease course of patients with chronic respiratory diseases, HCPs' concern of taking away patients' hopes and lack of continuity of care. The identification of trigger points and training of HCPs on how to communicate sensitive topics were identified as facilitators to engagement in ACP., Conclusions: In conclusion, ACP is surprisingly uncommon in chronic respiratory disease, possibly due to the complex disease course of chronic respiratory diseases and ambivalence of both patients and HCPs to engage in ACP. Providing patients with information about their disease can help meeting their needs. Additionally, support of HCPs through identification of trigger points, training and system-related changes can facilitate engagement in ACP., Systematic Review Registration Number: CRD42016039787., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Published
2018
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50. Nurses' perspectives of a new individualized nursing care intervention for COPD patients in primary care settings: A mixed method study.

Author

Weldam SW, Lammers JJ, Zwakman M, and Schuurmans MJ

Subjects
Adult, Female, Humans, Male, Middle Aged, Attitude of Health Personnel, Nursing Staff psychology, Primary Health Care organization & administration, Pulmonary Disease, Chronic Obstructive nursing
Abstract

Background: The major challenges in Chronic Obstructive Pulmonary Disease (COPD) care are guiding a patient in daily living with the consequences of the disease, reducing the impact of symptoms and improving Health Related Quality of Life (HRQoL). The new nurse-led COPD-Guidance, Research on an Illness Perception (COPD-GRIP) intervention translates the evidence concerning illness perceptions and Health Related Quality of Life (HRQoL) into a practice nurse intervention. The aim is to explore the nurses' experiences with applying the new COPD-GRIP intervention., Method: An explanatory mixed-method study nested in a cluster randomized trial in primary care was conducted. Pre-intervention questionnaires were sent to all participating nurses (N=24) to identify expectations. Post-intervention questionnaires identified experiences after applying the intervention followed by two focus groups to further extend exploration of findings. Questionnaires were analyzed by descriptive analyses. To identify themes the audio-taped and transcribed focus groups were independently coded by two researchers., Results: The nurses described the intervention as a useful, structured and individualized tool to guide COPD patients in living with the consequences of COPD. Applying the intervention took less time than the nurses initially expected. The intervention enables to provide patient-centered care and to address patient needs. Barriers were encountered, especially in patients with a lower social economic status, in patients with a lower health literacy and in patients with other cultural backgrounds than the Dutch background., Conclusion: Nurses perceived the COPD-GRIP intervention as a feasible, individualized tool. According to the nurses, the intervention is a valuable improvement in the care for COPD patients., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Published
2017
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