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1. Blended cognitive behaviour therapy for children and adolescents with mitochondrial disease targeting fatigue (PowerMe): study protocol for a multiple baseline single case experiment

Author

I. L. Klein, K. F. E. van de Loo, T. J. Hoogeboom, M. C. H. Janssen, J. A. M. Smeitink, E. van der Veer, C. M. Verhaak, and J. A. E. Custers

Subjects
Mitochondrial disease, Fatigue, Blended cognitive behaviour therapy, Single case experiment, Children and adolescents, Medicine (General), R5-920
Abstract

Abstract Background Mitochondrial disease is a rare, hereditary disease with a heterogeneous clinical presentation. However, fatigue is a common and burdensome complaint in children and adolescents with mitochondrial disease. No psychological intervention targeting fatigue exists for paediatric patients with a mitochondrial disease. We designed the PowerMe intervention, a blended cognitive behaviour therapy targeting fatigue in children and adolescents with mitochondrial disease. The aim of the intervention is to reduce perceived fatigue by targeting fatigue-related cognitions and behaviours. Methods A multiple baseline single case experiment will be conducted in five children (8–12 years old) and 5 adolescents (12–18 years old) with mitochondrial disease and severe fatigue. Patients will be included in the study for 33 weeks, answering weekly questions about the fatigue. Patients will be randomly assigned a baseline period of 5 to 9 weeks before starting the PowerMe intervention. The intervention consists of face-to-face and online sessions with a therapist and a website with information and assignments. The treatment will be tailored to the individual. Each patient will work on their personalized treatment plan focusing on personally relevant goals. The primary outcome is perceived fatigue. Secondary outcomes are quality of life, school presence and physical functioning. Discussion The results of the PowerMe study will provide information on the efficacy of a blended cognitive behaviour therapy on reducing perceived fatigue and its impact on daily life in children and adolescents with mitochondrial disease. Strengths and limitations of the study design are discussed. Trial registration Dutch Trial Register NTR 7675. Registered on 17 December 2018. Identifier https://www.trialregister.nl/trial/7433

Published
2021
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2. Health related quality of life in Dutch infants, toddlers, and young children

Author

S. A. Schepers, H. A. van Oers, H. Maurice-Stam, J. Huisman, C. M. Verhaak, M. A. Grootenhuis, and L. Haverman

Subjects
Health-related quality of life, Pediatrics, Child, Psychometrics, Patient outcome assessment, Computer applications to medicine. Medical informatics, R858-859.7
Abstract

Abstract Background The purpose of this study is to provide Dutch normative data and to assess internal consistency and known-groups validity for the TNO AZL Preschool Children Quality of Life (TAPQOL) and the acute version of the generic Pediatric Quality of Life Inventory (PedsQL 4.0) in Dutch young children aged 0–7 years. Methods Participants were selected from a panel of a large Dutch market research agency. A sample of 794 parents (response rate 61%, 39% fathers) of children (53% boys) from the general Dutch population, completed an electronic version of the TAPQOL (N = 227 infants aged 0–1 years) or PedsQL 4.0 (N = 293 toddlers aged 2–4 years and N = 274 young children aged 5–7 years). Results Except for the ‘stomach’ scale (α = .39), the TAPQOL showed acceptable to excellent internal consistency (α = .60-.88). The PedsQL 4.0 showed acceptable to excellent reliability in children aged 2–4 years (α = .60–.88) and in children aged 5–7 years (α = .76–.90). Children with a chronic health condition had lower scores than healthy children on 3 out of 12 domains of the TAPQOL (p = .001–.013) and on 2 out of 6 domains of the PedsQL 4.0 for children aged 2–4 years (p = .016–.04). The PedsQL 4.0 differentiated on all domains (p

Published
2017
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3. Psychology and counselling

Author

H. Van Parys, E. Wyverkens, V. Provoost, A. Ravelingien, I. Raes, S. Somers, I. Stuyver, P. De Sutter, G. Pennings, A. Buysse, V. S. Anttila, M. Salevaara, A. M. Suikkari, D. R. Listijono, S. Mooney, M. G. Chapman, U. Res Muravec, S. Pusica, M. Lomsek, M. Cizek Sajko, S. Parames, L. Semiao-Francisco, H. Sato, J. Ueno, L. van den Wijngaard, M. H. Mochtar, H. van Dam, F. van der Veen, M. van Wely, I. A. P. Derks-Smeets, J. J. G. Habets, A. Tibben, V. C. G. Tjan-Heijnen, M. Meijer-Hoogeveen, J. P. M. Geraedts, R. van Golde, E. Gomez-Garcia, C. E. M. de Die-Smulders, L. A. D. M. van Osch, C. M. Kets, S. Gullo, Z. Donarelli, G. L. Coco, A. Marino, A. Volpes, F. Sammartano, A. Allegra, J. Nekkebroeck, H. Tournaye, D. Stoop, G. Lo Coco, F. Coffaro, D. G. Diaz, M. A. Gonzalez, M. Tirado, S. Chamorro, P. Dolz, M. A. Gil, A. Ballesteros, E. Velilla, C. Castello, N. Moina, M. Lopez-Teijon, C. H. Y. Chan, C. L. W. Chan, M. K. H. Leong, I. K. M. Cheung, T. H. Y. Chan, B. N. L. Hui, A. J. C. M. van Dongen, A. G. Huppelschoten, J. A. M. Kremer, W. L. D. M. Nelen, C. M. Verhaak, H. G. Sun, K. H. Lee, I. H. Park, S. G. Kim, J. H. Lee, Y. Y. Kim, H. J. Kim, J. D. Cho, Y. J. Yoo, V. Frokjaer, A. Pinborg, E. C. Larsen, M. Heede, D. S. Stenbaek, S. Henningsson, A. P. Nielsen, C. Svarer, K. K. Holst, G. M. Knudsen, M. Emery, L. DeJonckheere, S. Rothen, M. Wisard, M. Germond, M. Toftager, L. V. Hjordt, P. S. Jensen, K. Holst, T. Holland, T. Bryndorf, J. Bogstad, P. Hornnes, V. G. Frokjaer, L. M. N. Dornelles, F. MacCallum, R. C. S. Lopes, C. A. Piccinini, E. P. Passos, C. Bruegge, P. Thorn, K. Daniels, S. Imrie, V. Jadva, S. Golombok, Y. Arens, G. De Krom, R. J. T. Van Golde, E. Coonen, C. M. A. Van Ravenswaaij-Arts, J. L. H. Evers, C. E. M. De Die-Smulders, G. Ghazeeri, J. Awwad, A. Fakih, H. Abbas, S. Harajly, L. Tawidian, F. Maalouf, D. Ajdukovic, M. Pibernik-Okanovic, M. S. Alebic, G. Baccino, C. Calatayud, E. Ricciarelli, E. R. H. de Miguel, K. Wierckx, H. Verstraelen, L. Van Glabeke, E. Van den Abbeel, J. Gerris, G. T'Sjoen, B. Monica, R. N. Calonge, P. C. Peregrin, R. Cserepes, J. Kollar, T. Wischmann, A. Bugan, C. Pinkard, C. Harrison, L. Bunting, J. Boivin, B. Fulford, N. Theusink-Kirchhoff, C. M. A. van Ravenswaaij-Arts, M. K. Bakker, C. Volks, Z. Papaligoura, D. Papadatou, T. H. Bellali, S. Jarvholm, M. Broberg, A. Thurin-Kjellberg, G. Weitzman, T. M. Van Der Putten-Landau, S. Chudnoff, E. Panagopoulou, B. Tarlatzis, V. Tamhankar, G. L. Jones, P. Magill, J. D. Skull, W. Ledger, H. W. Hvidman, I. O. Specht, K. T. Schmidt, A. N. Andersen, T. Freeman, S. Zadeh, V. Smith, L. H. R. Whitaker, J. Reid, J. Wilson, H. O. D. Critchley, A. W. Horne, B. Peterson, M. Pirritano, L. Schmidt, H. Volgsten, N. Hudson, L. Culley, C. Law, E. Denny, H. Mitchell, M. Baumgarten, N. Raine-Fenning, L. Blake, and K. H. Kim

Subjects
Infertility, Medical education, Reproductive Medicine, Health professionals, Obstetrics and gynaecology, business.industry, Rehabilitation, Professional development, Obstetrics and Gynecology, Medicine, business, medicine.disease
Published
2013

4. Session 44: Long term outcome of ART

Author

E. Sullivan, L. Hilder, Y. A. Wang, K. J. Sundh, C. Bergh, A. K. A. Henningsen, K. Kallen, L. B. Romundstad, A. Pinborg, A. Nyboe-Andersen, R. Skjaerven, M. Gissler, A. Tiitinen, K. G. Nygren, U. B. Wennerholm, C. L. Williams, K. J. K. Bunch, C. A. Stiller, M. F. G. Murphy, W. H. Wallce, M. Davies, B. Botting, A. G. Sutcliffe, C. E. Cesta, H. Olsson, S. Cnattingius, V. Johansson, P. Lichtenstein, A. N. Iliadou, S. Gameiro, A. W. van den Belt-Dusebout, E. Bleiker, D. Braat, F. E. van Leeuwen, and C. M. Verhaak

Subjects
medicine.medical_specialty, 030219 obstetrics & reproductive medicine, business.industry, Rehabilitation, Obstetrics and Gynecology, Outcome (game theory), Term (time), 03 medical and health sciences, 0302 clinical medicine, Reproductive Medicine, Physical therapy, medicine, 030212 general & internal medicine, Session (computer science), business
Published
2013

5. PARAMEDICAL - NURSING

Author

V. Izquierdo Manrique, C. L. Ramos Acosta, R. Garcia Sanchez, C. Gonzalez Canino, M. Martinez Romero, L. Cornago Delgado, L. Gonzalez Aleman, A. C. Santos Ruiz, M. R. Martin Guillada, A. Rodriguez Benitez, C. R. Garcia Guzman, J. Hernandez Hernandez, A. Palumbo, C. Meunier, G. Callender, S. Matey, A. Alvarez, V. Legidos, E. Lara, I. Cabanes, A. Requena, J. Boivin, L. Bunting, C. M. Verhaak, V. Rozee, C. Gallo, A. Ruiz Jorro, J. Remohi Gimenez, A. Pellicer Martinez, E. Kamisawa, N. Hirabayashi, S. Wakasa, K. Inoue, H. Yusa, S. Sahuquillo, M. Meseguer, A. Martinez, V. Fernandez, L. Jimenez, A. Borgonoz, A. Pellicer, P. Alama, S. Sahin, N. K. Beji, M. D. Bal, S. D. Yilmaz, S. Caliskan, B. Urman, L. Perl, E. Zwahlen, K. Gourounti, F. Anagnostopoulos, K. Stefanidis, S. Lone, G. Vaslamatzis, and K. Lykeridou

Subjects
Reproductive Medicine, Rehabilitation, Obstetrics and Gynecology
Published
2012

6. POSTER VIEWING SESSION - PSYCHOLOGY AND COUNSELLING

Author

I. Daly, C. Lampic, A. Skoog Svanberg, G. Sydsjo, N. Fryk, O. Shyshak, Z. Donarelli, G. Lo Coco, S. Gullo, A. Marino, A. Volpes, A. Allegra, L. Hinton, J. J. Kurinczuk, S. Ziebland, Y. Frederiksen, R. Zachariae, L. Schmidt, H. J. Ingerslev, L. Vercammen, D. Stoop, M. De Vos, N. P. Polyzos, J. Nekkebroeck, P. Devroey, S. Graham, V. Jadva, M. Morrissette, S. Golombok, J. Hamilton, H. Behan, R. Venables, B. Maher, C. Moorhead, C. Hughes, E. Mocanu, J. M. J. Smeenk, C. M. Verhaak, N. Valladolid, J. A. Guijarro, M. Brod, M. P. H. Simone Crespi, P. Hein Fennema, L. Blake, J. Readings, P. Casey, C. Jordan, P. Broderick, C. Winter, F. Belva, M. Bondulle, U. Van den Broeck, M. Vandermeeren, D. Vanderschueren, P. Enzlin, K. Demyttenaere, T. M. D'Hooghe, C. Harrison, L. Bunting, I. Tsibulsky, J. Boivin, A. Overbeek, M. H. van den Berg, L. Louwe, C. Hilders, M. A. Veening, C. B. Lambalk, A. M. Stiggelbout, E. van Dulmen-den Broeder, M. M. Ter Kuile, A. Indekeu, T. D'Hooghe, P. De Sutter, B. Vanderschot, M. Welkenhuysen, P. Rober, H. Colpin, P. Riedel, I. T. Baeckert-Sifedine, V. Iversen C., O. Ludwig, S. Ludwig, H. Kentenich, S. Brandstrom, A. L. Geijervall, J. Gudmundsson, P. O. Karlstrom, N. G. Solensten, A. J. C. M. Van Dongen, J. A. M. Kremer, P. H. J. Van Sluisveld, W. L. D. M. Nelen, A. Galhardo, M. Cunha, J. Pinto-Gouveia, D. A. Huppelschoten, J. W. M. Aarts, I. W. H. van Empel, W. L. Nelen, H. Ockhuysen, A. Hoogen, N. S. Macklon, A. Aarts, P. van den Haak, W. Nelen, W. Tuil, M. Faber, J. Kremer, C. W. Bak, H. H. Seok, S. H. Song, S. W. Yoo, W. S. Lee, and T. K. Yoon

Subjects
Gynecology, Coping (psychology), medicine.medical_specialty, Reproductive Medicine, business.industry, Rehabilitation, Recurrent miscarriage, Obstetrics and Gynecology, Medicine, business, medicine.disease, Bracing, Clinical psychology
Published
2011

7. Posters * Safety & Quality (I.E. Guidelines, Multiple Pregnancy, Outcome, Follow-Up etc.)

Author

P. Ocal, S. Sahmay, T. Irez, H. Senol, I. Cepni, S. Purisa, W. Lin, X. Liu, A. Donjacour, E. Maltepe, P. Rinaudo, M. N. Baumgarten, D. Stoop, P. Haentjes, G. Verheyen, F. De Schrijver, I. Liebaers, M. Camus, M. Bonduelle, P. Devroey, E. C. M. Nelissen, A. P. A. Van Montfoort, E. Coonen, J. G. Derhaag, J. L. H. Evers, J. C. M. Dumoulin, J. R. Costa Lopes, J. Mendes dos Santos, S. Portugal Silva Lima, S. Portugal Silva Souza, T. Rodrigues Pereira, J. P. Barguil Brasileiro, H. Pina, M. L. Lessa, M. Genovese Soares, V. Medina Lopes, C. G. Ribeiro, K. Adami, C. Hughes, G. Emerson, K. Grundy, P. Kelly, E. Mocanu, T. Coelho Cafe, J. B. M. de Souza Costa, N. I. Zavattiero Tierno, S. Singh, S. Vitthala, A. Zosmer, L. Sabatini, A. Tozer, C. Davis, T. Al-Shawaf, Q. V. Neri, D. Monahan, Z. Rosenwaks, G. D. Palermo, E. Kalu, M. Y. Thum, H. A. Abdalla, A. Sazonova, C. Bergh, K. Kallen, A. Thurin-Kjellberg, U. B. Wennerholm, G. Griesinger, K. Doody, H. Witjes, B. Mannaerts, B. Tarlatzis, L. Rombauts, E. Heijnen, M. Marintcheva-Petrova, J. Elbers, A. Koning, M. A. Q. Mutsaerts, A. Hoek, B. W. Mol, R. Fadini, T. Guarnieri, M. Mignini Renzini, R. Comi, M. Mastrolilli, A. Villa, E. Colpi, G. Coticchio, M. Dal Canto, M. Dolleman, S. L. Broer, B. C. Opmeer, B. C. Fauser, F. J. M. Broekmans, P. Alama, A. Requena, J. Crespo, M. Munoz, A. Ballesteros, E. Munoz, M. Fernandez, M. Meseguer, J. A. Garcia-Velasco, A. Pellicer, M. Munk, S. Smidt-Jensen, J. Blaabjerg, C. Christoffersen, S. Lenz, S. Lindenberg, E. Bosch, E. Labarta, F. Cruz, C. Simon, J. Remohi, J. Esler, J. Osborn, C. Boissonnas Chalas, A. Marszalek, P. Fauque, J. P. Wolf, D. De Ziegler, L. Cabanes, P. Jouannet, A. R. Han, C. W. Park, S. W. Cha, H. O. Kim, K. M. Yang, J. Y. Kim, I. O. Song, M. K. Koong, I. S. Kang, R. Roszaman, M. H. Omar, Y. Nazri, Y. W. Azantee, A. Z. Murad, M. R. Zainulrashid, N. Wang, F. Le, L. Y. Wang, G. L. Ding, J. Z. Sheng, H. F. Huang, F. Jin, S. Reinblatt, H. Holzer, W. Y. Son, E. Shalom-Paz, R. C. Chian, W. Buckett, M. Dahan, E. Demirtas, S. L. Tan, A. Revel, Y. Schejter-Dinur, S. Revel-Vilk, R. P. M. G. Hermens, E. van den Boogaard, N. J. Leschot, J. H. A. Vollebergh, R. Bernardus, J. A. M. Kremer, F. van der Veen, M. Goddijn, M. J. Nahuis, N. Kose, N. Bayram, P. G. A. Hompes, B. W. J. Mol, F. van der veen, M. van Wely, J. Van Disseldorp, M. D. Dolleman, K. Broeze, M. De Rycke, L. Petrussa, H. Van de Velde, M. Cerrillo, A. Pacheco, S. Rodriguez, R. Gomez, F. Delagado, J. A. Garcia Velasco, S. Desmyttere, W. Verpoest, C. Staessen, A. De Vos, G. Kohls, F. J. Ruiz, G. De la Fuente, M. Toribio, M. Martinez, V. Soderstrom - Anttila, M. Salevaara, A. M. Suikkari, E. Clua, R. Tur, N. Alcaniz, M. Boada, I. Rodriguez, P. N. Barri, A. Veiga, W. L. D. M. Nelen, I. W. H. Van Empel, B. J. Cohlen, J. S. Laven, J. W. M. Aarts, E. Ricciarelli, J. L. Gomez-Palomares, L. Andres-Criado, E. R. Hernandez, B. Courbiere, M. Aye, J. Perrin, C. Di Giorgio, M. De Meo, A. Botta, J. Castilla Alcala, F. Luceno Maestre, Y. Cabello, J. Hernandez, J. Marqueta, A. Pareja, E. Hernandez, B. Coroleu, L. Helmgaard, B. M. Klein, J. C. Arce, I. W. H. van Empel, J. Boivin, C. M. Verhaak, G. Ding, R. Yin, J. Sheng, H. Huang, F. Mancini, M. J. Gomez, N. M. van den Boogaard, J. W. van der Steeg, P. Hompes, P. Boyer, M. Gervoise-Boyer, L. Meddeb, B. Rossin, F. Audibert, S. Sakian, E. Chan Wong, S. Ma, R. Pathak, M. D. Mustafa, R. S. Ahmed, A. K. Tripathi, K. Guleria, B. D. Banerjee, G. Vela, M. Luna, E. D. Flisser, B. Sandler, M. Brodman, L. Grunfeld, A. B. Copperman, M. Baronio, P. Carrascosa, C. Capunay, J. Vallejos, S. Papier, M. Borghi, C. Sueldo, J. Carrascosa, E. Martin Lopez, A. Marcucci, I. Marcucci, P. Salacone, A. Sebastianelli, L. Caponecchia, N. Pacini, R. Rago, M. Alvarez, O. Carreras, M. Arnoldi, D. Diaferia, M. G. Corbucci, L. De Lauretis, M. J. Kook, J. Y. Jung, J. H. Lee, Y. J. Jung, H. K. Hwang, A. Kang, S. J. An, H. M. Kim, H. C. Kwon, S. J. Lee, M. Satoh, J. Imada, K. Ito, F. Migishima, T. Inoue, Y. Ohnishi, H. Kawato, Y. Nakaoka, A. Fukuda, Y. Morimoto, S. Mourad, R. P. T. M. Grol, N. P. Polyzos, A. Valachis, E. Patavoukas, E. G. Papanikolaou, I. E. Messinis, B. C. Tarlatzis, H. Kang, C. H. Kim, E. Park, S. Kim, H. D. Chae, B. M. Kang, K. S. Jung, H. J. Song, Y. S. Ahn, L. Petkova, I. Canov, T. Milachich, A. Shterev, C. Patrat, K. Pocate, J. C. Juillard, V. Gayet, V. Blanchet, D. de Ziegler, J. W. van der, E. Leushuis, P. Steures, C. Koks, J. Oosterhuis, P. Bourdrez, and P. M. Bossuyt

Subjects
Gynecology, medicine.medical_specialty, business.industry, media_common.quotation_subject, Rehabilitation, Viral screening, Obstetrics and Gynecology, Reproductive Medicine, Oocyte Collection, medicine, Quality (business), Intensive care medicine, business, media_common
Published
2010

8. Session 07: Psychology & Counselling 1

Author

M. Emery, D. Wirthner, M. Germond, M. C. Van Rij, R. Lulofs, N. Muntjewerff, J. L. H. Evers, J. P. M. Geraedts, C. E. M. de Die, F. Vansenne, M. Goddijn, B. Redeker, S. Snijder, K. Gerssen-Schoorl, H. H. Lemmink, N. J. Leschot, F. Van der Veen, P. M. M. Bossuyt, C. A. J. M. De Borgie, J. Nekkebroeck, D. Stoop, P. Devroey, V. Provoost, G. Pennings, P. De Sutter, J. Gerris, A. Vandevelde, M. Dhont, C. M. Verhaak, J. W. M. Aarts, J. Boivin, J. A. M. Kremer, and I. W. H. van Empel

Subjects
Gynecology, Infertility, medicine.medical_specialty, Quality of life (healthcare), Reproductive Medicine, Family medicine, Rehabilitation, medicine, Obstetrics and Gynecology, medicine.disease, Psychology
Published
2010

9. ESHRE guideline: routine psychosocial care in infertility and medically assisted reproduction-a guide for fertility staff

Author

S, Gameiro, J, Boivin, E, Dancet, C, de Klerk, M, Emery, C, Lewis-Jones, P, Thorn, U, Van den Broeck, C, Venetis, C M, Verhaak, T, Wischmann, and N, Vermeulen

Subjects
Psychotherapy, Reproductive Techniques, Assisted, Evidence-Based Practice, Infertility, Practice Guidelines as Topic, Humans
Abstract

Based on the best available evidence in the literature, what is the optimal management of routine psychosocial care at infertility and medically assisted reproduction (MAR) clinics?Using the structured methodology of the Manual for the European Society of Human Reproduction and Embryology (ESHRE) Guideline Development, 120 recommendations were formulated that answered the 12 key questions on optimal management of routine psychosocial care by all fertility staff.The 2002 ESHRE Guidelines for counselling in infertility has been a reference point for best psychosocial care in infertility for years, but this guideline needed updating and did not focus on routine psychosocial care that can be delivered by all fertility staff.This guideline was produced by a group of experts in the field according to the 12-step process described in the ESHRE Manual for Guideline Development. After scoping the guideline and listing a set of 12 key questions in PICO (Patient, Intervention, Comparison and Outcome) format, thorough systematic searches of the literature were conducted; evidence from papers published until April 2014 was collected, evaluated for quality and analysed. A summary of evidence was written in a reply to each of the key questions and used as the basis for recommendations, which were defined by consensus within the guideline development group (GDG). Patient and additional clinical input was collected during the scoping and the review phase of the guideline development.The guideline group, comprising psychologists, two medical doctors, a midwife, a patient representative and a methodological expert, met three times to discuss evidence and reach consensus on the recommendations.120 recommendations that aim at guiding fertility clinic staff in providing optimal evidence-based routine psychosocial care to patients dealing with infertility and MAR. The guideline is written in two sections. The first section describes patients' preferences regarding the psychosocial care they would like to receive at clinics and how this care is associated with their well-being. The second section of the guideline provides information about the psychosocial needs patients experience across their treatment pathway (before, during and after treatment) and how fertility clinic staff can detect and address these. Needs refer to conditions assumed necessary for patients to have a healthy experience of the fertility treatment. Needs can be behavioural (lifestyle, exercise, nutrition and compliance), relational (relationship with partner if there is one, family friends and larger network, and work), emotional (well-being, e.g. anxiety, depression and quality of life) and cognitive (treatment concerns and knowledge).We identified many areas in care for which robust evidence was lacking. Gaps in evidence were addressed by formulating good practice points, based on the expert opinion of the GDG, but it is critical for such recommendations to be empirically validated.The evidence presented in this guideline shows that providing routine psychosocial care is associated with or has potential to reduce stress and concerns about medical procedures and improve lifestyle outcomes, fertility-related knowledge, patient well-being and compliance with treatment. As only 45 (36.0%) of the 125 recommendations were based on high-quality evidence, the guideline group formulated recommendations to guide future research with the aim of increasing the body of evidence.

Published
2015

10. Experts' opinions on the benefit of an incidental prenatal diagnosis of sex chromosomal aneuploidy: a qualitative interview survey

Author

J J P M, Pieters, C M, Verhaak, D D M, Braat, E, van Leeuwen, and A P T, Smits

Subjects
Adult, Male, Incidental Findings, Data Collection, Genetic Counseling, Aneuploidy, Risk Assessment, Interviews as Topic, Pregnancy, Prenatal Diagnosis, Surveys and Questionnaires, Humans, Female, Child, Expert Testimony, Sex Chromosome Aberrations, Netherlands
Abstract

Incidental findings in prenatal diagnostic testing may or may not have clear prognostic significance for the phenotype. We studied experts' opinions of the benefit and disadvantage of an incidental prenatal diagnosis of a sex chromosomal aneuploidy (SCA).We interviewed 16 experts in the field of counseling and treatment of people with SCA and asked 13 clinical geneticists and genetic associates about the clinical relevance of an incidental prenatal diagnosis of SCA.Most of the experts and clinical geneticists (87.5% and 76.9%, respectively) stated that an incidental prenatal diagnosis of SCA was a benefit for the child and the parents. They acknowledged the possibility of parental decisions to terminate pregnancy. Expert options in screening, training, and treatment of health, behavior, and fertility problems increase with an early diagnosis of SCA.Most experts favored an incidental prenatal diagnosis of SCA despite the complex counseling issues and their acknowledgment of possible parental decisions to terminate pregnancy. They believed the benefits greatly outweigh the disadvantages.

Published
2012

11. Parents' perspectives on the unforeseen finding of a fetal sex chromosomal aneuploidy

Author

J J P M, Pieters, A J A, Kooper, A J, Eggink, C M, Verhaak, B J, Otten, D D M, Braat, A P T, Smits, and E, van Leeuwen

Subjects
Adult, Male, Parents, Decision Making, Sex Chromosome Disorders, Disclosure, Middle Aged, Aneuploidy, Fetal Diseases, Attitude, Pregnancy, Prenatal Diagnosis, Surveys and Questionnaires, Humans, Female, Perception, Sex Chromosome Aberrations
Abstract

To investigate the parental perspectives of being confronted with an unforeseen fetal sex chromosomal aneuploidy (SCA), in light of the fact that this accidental finding is avoidable by rapid aneuploidy detection (RAD).Exploratory qualitative interview study. We conducted 16 semi-structured interviews with parents who decided to continue pregnancy after the unforeseen finding of a fetal SCA.The communication of the unforeseen finding of SCA; the informed decision-making process concerning the pregnancy follow-up and the child and its future were the extracted themes. Parents were not prepared to accidental findings in routine prenatal diagnostics. All started an unguided search on the Internet. It is not at all clear whether parents have preference for an RAD test with X and Y probes Parents were satisfied with the post-test professional information they received to make an informed decision, whereas after birth questions still remained to be answered.Parents' perspectives may serve as major contributors to research on the question whether or not the X and Y probes should be standard included for purposes of RAD. The fact that RAD has the possibility to avoid accidental findings of SCAs, brings up the question whether any benefits outweigh the potential harms.

Published
2010

12. Improving clinical understanding of the effect of ovarian stimulation on women's lives

Author

C. M. Verhaak, C. J. Wiebinga, E. H. M. Hoomans, M. Brod, and Jan Gerris

Subjects
Gerontology, Adult, medicine.medical_specialty, media_common.quotation_subject, medicine.medical_treatment, Alternative medicine, Stimulation, Fertility, Interviews as Topic, Ovulation Induction, medicine, Humans, Depression (differential diagnoses), media_common, business.industry, Obstetrics and Gynecology, Psychological determinants of chronic illness [NCEBP 8], Focus Groups, Mental health, Focus group, United Kingdom, United States, Mental Health, Reproductive Medicine, Conceptual model, Ovulation induction, Female, France, business, Developmental Biology
Abstract

Contains fulltext : 80301.pdf (Publisher’s version ) (Closed access) A conceptual model was developed of the impact of ovarian stimulation on women's functioning and wellbeing. A patient-reported outcome (PRO) measure was generated based on this model. Qualitative measures used comprised a discussion guide and coding system devised according to the Food and Drug Administration guidelines for developing PRO measures. Data were gathered through telephone and face-to-face interviews and focus groups. A total of 47 women across nine fertility healthcare providers in France, UK and USA were included in the analysis. The mean age of patients was 35 years (range 24-44). Based on data collected and prior postulated domains, a conceptual model of the impact of ovarian stimulation was developed. Three major (psychological, interference in daily life, logistics) and one minor (side effects) domain were identified. Short-term consequences included problems with psychological health and productivity. Longer term consequences included depression and poor self-image. Factors that modified the impact of ovarian stimulation were also identified. This is the first model providing insight into the impact of ovarian stimulation on women's functioning and wellbeing. Once validated, it can be applied in quantitative research to improve understanding of the impact of ovarian stimulation, and assist in developing more patient-centred approaches to treatment.

Published
2009

13. Interventies in de pediatrische psychologie

Author

C. M. Verhaak and M. A. Grootenhuis

Subjects
Human Reproduction [NCEBP 12], Pediatrics, Perinatology and Child Health, Determinants of Health and Disease [EBP 1], Psychological determinants of chronic illness [NCEBP 8], Theology, Psychology
Abstract

Somatische problemen staan zelden op zichzelf. Dat geldt zeker bij kinderen. Kinderen die zich aanmelden in de pediatrische praktijk, hebben vaak psychosociale comorbiditeit. Daarnaast spelen psychologische factoren een rol in het beloop van hun aandoening.

Published
2008

14. [No arguments to support an age limit for men entering an in vitro fertilisation or intracytoplasmic sperm injection programme]

Author

M, Römkens, B, Gordijn, C M, Verhaak, E J H, Meuleman, and D D M, Braat

Subjects
Male, Fathers, Risk Factors, Age Factors, Humans, Fertilization in Vitro, Sperm Injections, Intracytoplasmic, Middle Aged
Abstract

To identify medical and psychosocial risks that could arise from allowing older men to father children through in vitro fertilisation (IVF) or intracytoplasmic sperm injection (ICSI).Literature review.The databases Medline, Current Contents weekly, Current Contents archives, and PsycINFO were searched over the period 1970--June 2004 for articles with data on age limits for men entering IVF/ICSI programmes. The following inclusion criteria were used: availability in the Netherlands and written in English or Dutch.Although sperm quality decreases with age, men remain fertile up to an advanced age. The risks of having children with autosomal dominant disorders or chromosomal defects increase slightly, but the individual chance is extremely small. Studies on the psychological development of children with fathers aged50 years are lacking. Extrapolation from other studies indicates that growing up with an older father has no negative influence on child development. Although older fathers have a greater chance of dying sooner, the absence of the father does not contribute significantly to psychological problems in offspring later in life.There are no medical or psychosocial arguments to support an age limit for men entering an IVF/ICSI programme.

Published
2005

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