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9. Implementing person-centred outcome measures in palliative care: An exploratory qualitative study using Normalisation Process Theory to understand processes and context

Author

Bradshaw, Andy, primary, Santarelli, Martina, additional, Mulderrig, Malene, additional, Khamis, Assem, additional, Sartain, Kathryn, additional, Boland, Jason W., additional, Bennett, Michael I., additional, Johnson, Miriam, additional, Pearson, Mark, additional, and Murtagh, Fliss E. M., additional

Published
2020
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12. Practice review: Evidence-based and effective management of fatigue in patients with advanced cancer.

Author

Chapman, Emma J, Martino, Erica Di, Edwards, Zoe, Black, Kathryn, Maddocks, Matthew, and Bennett, Michael I

Subjects
DRUG efficacy, TERMINAL care, METHYLPHENIDATE, ADRENOCORTICAL hormones, NUTRITION, EVIDENCE-based medicine, CANCER patients, FATIGUE (Physiology), ALTERNATIVE medicine, PSYCHOTHERAPY
Abstract

Background: Fatigue affects most patients living with advanced cancer and is a symptom that healthcare professionals can find difficult to manage. Aim: To provide healthcare professionals with a pragmatic overview of approaches to management of fatigue in patients with advanced cancer that are commonly recommended by guidelines and to evaluate evidence underpinning them. Design: Scoping review methodology was used to determine the strength of evidence supporting use of interventions recommended in management of fatigue in patients with advanced cancer. Data sources: National or international guidelines were examined if they described the management of fatigue in adult cancer patients and were written within the last 6 years (2015–2021) in English. The Cochrane Database of Systematic Reviews (January 2011–December 2021) was searched for 'cancer' AND 'fatigue' in title, abstract or keywords. A PubMed search was also made. Results: Evidence indicates physical exercise interventions are effective and patients may benefit from energy conservation tactics. Evidence does not support use of psychostimulants such as methylphenidate. Limited data were found on efficacy of corticosteroids, psychological interventions, nutritional intervention, sleep optimization or complementary therapies for management of fatigue in advanced cancer. Conclusion: We recommend regular assessment, review and acknowledgement of the impact of fatigue. Exercise and energy conservation should be considered. Pharmacological interventions are not endorsed as a routine approach. Many interventions currently recommended by guidelines are not supported by a robust evidence base and further research on their efficacy is required. [ABSTRACT FROM AUTHOR]

Published
2022
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14. CONTRIBUTORS

Author

Aberg, Judith A., primary, Abernethy, Amy P., additional, Abrahm, Janet L., additional, Adolph, Michael, additional, Aherne, Michael, additional, Allsopp, K., additional, Altisent, Rogelio, additional, Alvarez, Carmen Fernandez, additional, Amigo, Pablo, additional, Anderson, Wendy G., additional, Ang, Sik Kim, additional, Antonelli, Tiziana, additional, Armstrong, John, additional, Armstrong, Wendy S., additional, Arnold, Robert M., additional, Arranz, Pilar, additional, Augustyns, Koen, additional, Sáenz-Diez, Isabel Barreiro-Meiro, additional, Barreto, Pilar, additional, Barton, Debra, additional, Bates, Ursula, additional, Fernandez-Creuchet Santos, Maria B., additional, Bátiz, Jacinto, additional, Benedetti, Costantino, additional, Bennani-Baiti, Nabila, additional, Bennett, Michael I., additional, Berger, Kevin, additional, Bhatnagar, Mamta, additional, Bicanovsky, Lesley, additional, Blue, Lynda, additional, Bobb, Barton, additional, Body, Jean-Jacques, additional, Borasio, Gian Domenico, additional, Borreani, Claudia, additional, Bozzetti, Federico, additional, Bozzetti, Valentina, additional, Braybrooke, Jason, additional, Breitbart, William, additional, Bresnihan, Barry, additional, Broeckaert, Bert, additional, Bruera, Eduardo, additional, Brune, Kay, additional, Buckhout, Bradley, additional, Butow, Phyllis N., additional, Byock, Ira, additional, Byrne, Anthony, additional, Byrne, Clare, additional, Cable-Williams, Beryl E., additional, Callin, Sarah E., additional, Casarett, David, additional, Casper, David, additional, Cassell, Eric J., additional, Cassileth, Barrie, additional, Castagno, Emanuele, additional, Centeno, Carlos, additional, Ceranski, Walter, additional, Ceulemans, Lucas, additional, Chadha, Meghna, additional, Chamberlain, Bruce H., additional, Chang, Eric L., additional, Chang, Victor T., additional, Chochinov, Harvey Max, additional, Chow, Edward, additional, Christ, Grace, additional, Clark, Katherine, additional, Clarke, Stephen, additional, Clayton, Josephine M., additional, Cleary, James F., additional, Clein, Lawrence J., additional, Clemens, Katri Elina, additional, Clemens, Libby, additional, Colebunders, Robert, additional, Connor, Steven R., additional, Conraads, Viviane, additional, Cooney, Colm, additional, Costantini, Massimo, additional, Couceiro, Azucena, additional, Covington, Holly, additional, Cowan, John D., additional, Coyne, Patrick, additional, Crawford, Garnet, additional, Creedon, Brian, additional, Cronin, Hilary, additional, Cullen, Garret, additional, Cummings, Jennifer E., additional, Currow, David C., additional, Daeninck, Paul J., additional, Dalinis, Pamela, additional, Das, Prajnan, additional, Davis, Mellar P., additional, Davison, Sara N., additional, Deamant, Catherine, additional, de Lima, Liliana, additional, Delany, Conor P., additional, Demeulenaere, Peter, additional, Dergham, Lena, additional, Derycke, Noël, additional, Dhupar, Rajeev, additional, Dicato, Mario, additional, Dickerson, Edwin D., additional, Dickman, Andrew, additional, Dietrich, Maria, additional, Dixon, Pamela, additional, Dodd, Philip C., additional, D'Olimpio, James T., additional, Dombernowsky, Per, additional, Dooley, Michael, additional, Dudgeon, Deborah, additional, Dunn, Geoffrey P., additional, Dunwoodie, David, additional, Eades, Jane, additional, El Osta, Badi, additional, Elbert-Avila, Katja, additional, Ellershaw, John, additional, Estfan, Bassam, additional, Exton, Louise, additional, Fairchild, Alysa, additional, Farrelly, Matthew, additional, Fassbender, Konrad, additional, Faulhaber, Jason, additional, Fearon, Kenneth C.H., additional, Fenelon, Lynda E., additional, Ferson, Peter F., additional, Feyer, Petra, additional, Filbet, Marilene, additional, Firth, Pam, additional, FitzGerald, Susan F., additional, Flood, Hugh D., additional, Floriani, Francesca Crippa, additional, Ford, Paul J., additional, Fortner, Barry, additional, Foth, Darlene, additional, Fowler, Bridget, additional, Frame, Karen, additional, Fraser, Thomas G., additional, Frost, Fred, additional, Fulham, Michael J., additional, Gagnon, Pierre R., additional, Gallagher, Lisa M., additional, Gambles, Maureen, additional, Giri, Subhasis K., additional, Glare, Paul, additional, Goh, Cynthia R., additional, Gómez-Batiste, Xavier, additional, Gramlich, Leah, additional, Grassi, Luigi, additional, Grauer, Phyllis A., additional, Green, Claire, additional, Griffiths, Gareth, additional, Griffo, Yvona, additional, Groninger, Hunter, additional, Gruenewald, David A., additional, Gubili, Jyothirmai, additional, Gutgsell, Terence L., additional, Gwyther, Elizabeth, additional, Haber, Paul S., additional, Haemers, Achiel, additional, Haley, Mindi C., additional, Hanna, Mazen A., additional, Hardy, Janet R., additional, Haselkorn, Jodie, additional, Hauser, Katherine, additional, Heaven, Cathy, additional, Herman, Michael, additional, Herrstedt, Jørn, additional, Higgins, Stephen, additional, Higginson, Irene J., additional, Hilden, Joanne M., additional, Hillenbrand, Kathryn L., additional, Hinz, Burkhard, additional, Homsi, Jade, additional, Hood, Kerry, additional, Hou, Juliet Y., additional, Hubens, Guy, additional, Hudson, Peter, additional, Hughes, John G., additional, Hunt, John, additional, Hurwitz, Craig A., additional, Ibinson, James, additional, Janjan, Nora, additional, Jaspers, Birgit, additional, Jehser, Thomas, additional, Joffe, A. Mark, additional, John, Laurence, additional, Johnstone, Jennie, additional, Jones, J. Stephen, additional, Kane, Javier R., additional, Karafa, Matthew T., additional, Keaveny, Andrew P., additional, Keefe, Dorothy M.K., additional, Kelso, Catherine McVearry, additional, Kenny, Rose Anne, additional, Kern, Martina, additional, Khoshknabi, Dilara Seyidova, additional, Kirkova, Jordanka, additional, Kirsh, Kenneth L., additional, Kissane, David W., additional, Klaschik, Eberhard, additional, Komurcu, Seref, additional, Kottke-Marchant, Kandice, additional, Kozell, Kathryn M., additional, Krishnan, Sunil, additional, Kuban, Deborah, additional, Laber, Damian A., additional, Lagman, Ruth L., additional, Lalla, Rajesh V., additional, Lane, Deforia, additional, Larkin, Philip J., additional, Lasheen, Wael, additional, Lawlor, Peter, additional, LeGrand, Susan B., additional, Lens, Vincent, additional, Leskuski, Dona, additional, Levack, Pamela, additional, Levetown, Marcia, additional, Lewandowski, Jeanne G., additional, Lewis, William R., additional, Librach, S. Lawrence, additional, Lichtenthal, Wendy G., additional, Lickiss, J. Norelle, additional, Lijoi, Stefano, additional, Lin, Edward, additional, Lipman, Arthur G., additional, Livrozet, Jean-Michel, additional, Lloyd-Williams, Mari, additional, Logan, Richard M., additional, Martín, Francisco López-Lara, additional, Loprinzi, Charles L., additional, Loughnane, John, additional, Lucey, Michael, additional, Lyckholm, Laurie, additional, Macmillan, Carol, additional, Mair, Frances, additional, Makoni, Stephen N., additional, Malik, Bushra, additional, Malone, Kevin, additional, Maltoni, Marco, additional, Mani, Aruna, additional, Marchand, Lucille R., additional, Mareiniss, Darren P., additional, Marsland, Anna L., additional, Marston, Joan, additional, Martinez, Julia Romero, additional, Martínez de Ubago, Isabel, additional, Martins, Lina M., additional, Maughan, Timothy S., additional, Mayland, Catriona, additional, McClement, Susan E., additional, McCutcheon, Ian, additional, McGee, Michael F., additional, McGill, Neil, additional, McNamara, Stephen, additional, McPherson, Mary Lynn, additional, McQuay, Henry, additional, McQuillan, Regina, additional, McQuown, Robert E., additional, Meiring, Michelle, additional, Mercadante, Sebastiano, additional, Meyer, Elaine C., additional, Miller, Randy D., additional, Millerick, Yvonne, additional, Miniero, Roberto, additional, Mohamed, Armin, additional, Mooka, Busi, additional, Morrison, Helen M., additional, Muir, J. Cameron, additional, Mulcahy, Fiona, additional, Mulcahy, Hugh E., additional, Muller, Monica, additional, Müller-Busch, H. Christof, additional, Murray, Scott A., additional, Nauck, Friedemann, additional, Neasham, Katherine, additional, Nkosi, Busisiwe, additional, Noble, Simon, additional, Noguera, Antonio, additional, Nowak, Anna K., additional, Nuñez-Olarte, Juan, additional, Obbens, Eugenie A.M.T., additional, O'Brien, Tony, additional, Olden, Megan, additional, O'Leary, Norma, additional, Oliver, David, additional, Oliviere, David, additional, Omlin, Aurelius G., additional, Osenga, Kaci, additional, O'Shea, Diarmuid, additional, Ostgathe, Christophe, additional, Ottery, Faith D., additional, Ouellette, Michel, additional, Overton, Edgar Turner, additional, Palacios, Moné, additional, Palmer, Robert, additional, Palmer, Teresa, additional, Paradis, Carmen, additional, Parala, Armida G., additional, Pascual-López, Antonio, additional, Passik, Steven D., additional, Pawlik, Timothy M., additional, Payne, Malcolm, additional, Payne, Sheila, additional, Paz, Silvia, additional, Pereira, José, additional, Perkins, George, additional, Peschardt, Karin, additional, Pessin, Hayley, additional, Peterson, Douglas E., additional, Podichetty, Vinod K., additional, Pollens, Robin, additional, Pontifex, Eliza, additional, Poole, Susan, additional, Porta-Sales, Josep, additional, Poston, Graeme, additional, Powazki, Ruth D., additional, Powderly, William, additional, Pozuelo, Leopoldo, additional, Prommer, Eric, additional, Puchalski, Christina M., additional, Radbruch, Lukas, additional, Raes, David F.J., additional, Read, Jane, additional, Reddy, Anantha, additional, Reger, Steven I., additional, Rehm, Susan J., additional, Reich, Stephen G., additional, Rocafort, Javier, additional, Rosenblatt, Adam, additional, Rushton, Cynda Hylton, additional, Russell, K. Mitchell, additional, Ryan, Karen, additional, Rybicki, Lisa A., additional, Sacerdote, Paola, additional, Sahgal, Vinod, additional, Ann Sammon, Mary, additional, Sandrock, Dirk, additional, Sands, Mark, additional, Schilling, Denise L., additional, Schulz, Valerie Nocent, additional, Schum, Lisa N., additional, Selwyn, Peter, additional, Shadd, Joshua, additional, Shapiro, Charles L., additional, Sharif, Aktham, additional, Sharp, Helen M., additional, Shepard, Kirk V., additional, Sherwood, J. Timothy, additional, Shrestha, Nabin K., additional, Skipworth, Richard J.E., additional, Smith, Howard S., additional, Solomon, Mildred Z., additional, de Prado Otero, Diego Soto, additional, Spencer, Denise Wells, additional, Spice, Ron, additional, Spiegel, David, additional, Srivastava, Manish, additional, Staffurth, John N., additional, Starling, Randall, additional, Stewart, Grant D., additional, Stjernswärd, Jan, additional, Strasser, Florian, additional, Strauss, Edna, additional, Strohscheer, Imke, additional, Summey, Brett Taylor, additional, Sutton, Graham, additional, Sykes, Nigel P., additional, Taege, Alan J., additional, Tamburini, Marcello, additional, Tarumi, Yoko, additional, Tassinari, Davide, additional, Tattersall, Martin H.N., additional, Theil, Karl S., additional, Thomas, Keri, additional, Tookman, Adrian, additional, Torrubia, María P., additional, Towers, Anna, additional, Tsoi, Daphne, additional, Tucker, Rodney O., additional, Tulsky, James A., additional, Tunick, Rachel A., additional, Turner, Claire, additional, Twaddle, Martha L., additional, Twomey, Marie, additional, Ullrich, Christina, additional, Urch, Catherine E., additional, Vachon, Mary L.S., additional, Van den Eynden, Bart, additional, Vigano, Antonio, additional, Vlieghe, Erika, additional, Volandes, Angelo E., additional, Voltz, Raymond, additional, Walker, Paul W., additional, Watanabe, Sharon, additional, Weber, Michael A., additional, Weinstein, Elizabeth, additional, Weinstein, Sharon M., additional, Weise, Kathryn L., additional, Weisenfluh, Sherri, additional, Welsh, John, additional, White, Clare, additional, Wilson, Donna M., additional, Wolfe, Joanne, additional, Yavuzsen, Tugba, additional, Yee, Albert J.M., additional, Yerian, Lisa M., additional, and Zucchetti, Elena, additional

Published
2009
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24. Implementing person-centred outcome measures in palliative care: An exploratory qualitative study using Normalisation Process Theory to understand processes and context.

Author

Bradshaw, Andy, Santarelli, Martina, Mulderrig, Malene, Khamis, Assem, Sartain, Kathryn, Boland, Jason W., Bennett, Michael I., Johnson, Miriam, Pearson, Mark, and Murtagh, Fliss E. M.

Subjects
COMMUNICATION, CONCEPTUAL structures, INTEGRATED health care delivery, INTERVIEWING, RESEARCH methodology, MEDICAL education, HEALTH outcome assessment, PALLIATIVE treatment, QUALITATIVE research, AFFINITY groups, JUDGMENT sampling, LABELING theory, SOCIAL support, HUMAN services programs, PATIENT-centered care
Abstract

Background: Despite evidence demonstrating the utility of using Person-Centred Outcome Measures within palliative care settings, implementing them into routine practice is challenging. Most research has described barriers to, without explaining the causal mechanisms underpinning, implementation. Implementation theories explain how, why, and in which contexts specific relationships between barriers/enablers might improve implementation effectiveness but have rarely been used in palliative care outcomes research. Aim: To use Normalisation Process Theory to understand and explain the causal mechanisms that underpin successful implementation of Person-Centred Outcome Measures within palliative care. Design: Exploratory qualitative study. Data collected through semi-structured interviews and analysed using a Framework approach. Setting/participants: 63 healthcare professionals, across 11 specialist palliative care services, were purposefully sampled by role, experience, seniority, and settings (inpatient, outpatient/day therapy, home-based/community). Results: Seven main themes were developed, representing the causal mechanisms and relationships underpinning successful implementation of outcome measures into routine practice. Themes were: Subjectivity of measures; Frequency and version of Integrated Palliative care Outcome Scale; Training, education, and peer support; Building and sustaining community engagement; Electronic system readiness; The art of communication; Reinforcing use through demonstrating value. Conclusions: Relationships influencing implementation resided at individual and organisational levels. Addressing these factors is key to driving the implementation of outcome measures into routine practice so that those using palliative care services can benefit from the systematic identification, management, and measurement of their symptoms and concerns. We provide key questions that are essential for those implementing and using outcome measures to consider in order to facilitate the integration of outcome measures into routine palliative care practice. [ABSTRACT FROM AUTHOR]

Published
2021
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30. Authors Reply to Letter to Editor.

Author

Neoh, Karen, Page, Andrew, Chin-Yee, Nicolas, Doree, Carolyn, and Bennett, Michael I

Subjects
IRON deficiency anemia prevention, DRUG dosage, IRON, IRON in the body, CANCER patients, PARENTERAL infusions, IRON regulatory proteins, PALLIATIVE treatment, DRUG toxicity
Abstract

The article offers a review aimed to demonstrate the nuances, uncertainty, and need for more evidence in certain domains. It discusses that Systemic inflammation is common in the palliative population, impairing enteral iron absorption; and mentions advocating guideline-supported investigation of anaemia for palliative care patients (acknowledging the complexities of identifying underlying aetiology or aetiologies), tailoring treatment from results.

Published
2023
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32. National comparative audit of red blood cell transfusion practice in hospices: Recommendations for palliative care practice.

Author

Neoh, Karen, Gray, Ross, Grant-Casey, John, Estcourt, Lise, Malia, Catherine, Boland, Jason W., and Bennett, Michael I.

Subjects
ANEMIA treatment, THERAPEUTIC use of folic acid, THERAPEUTIC use of vitamin B12, THERAPEUTIC use of iron, AUDITING, CHRONIC diseases, COMPARATIVE studies, RED blood cell transfusion, HOSPICE care, MEDICAL protocols, MEDICAL practice, PALLIATIVE treatment, POLICY sciences, RISK assessment, TUMORS, DESCRIPTIVE statistics
Abstract

Background: Red blood cell transfusions are commonly used in palliative care to treat anaemia or symptoms caused by anaemia. In patients with advanced disease, there is little evidence of benefit to guide treatment decisions in the face of increased risk of harms. Aim: To determine national transfusion practice in hospices and compare this against National Institute for Health and Care Excellence and British Society of Haematology guidelines to develop recommendations to improve practice. Design and Setting: Prospective data collection on red blood cell transfusion practice in UK adult hospices over a 3-month census period. Results: A total of 121/210 (58%) hospices participated. A total of 465 transfusion episodes occurred in 83 hospices. Patients had a mean age of 71 years, and 96% had cancer. Mean pre-transfusion haemoglobin was 75 g/L (standard deviation = 11.15). Anaemia of chronic disease was the largest cause of anaemia (176; 38%); potentially amenable to alternative treatments. Haematinics were not checked in 70% of patients. Alternative treatments such as B12, folate and iron were rarely used. Despite transfusion-associated circulatory overload risk, 85% of patients were not weighed, and 84% had two or more units transfused. Only 83 (18%) patients had an improvement maintained at 30 days; 142 (31%) had <14 day improvement, and 50 (11%) had no improvement. A total of 150 patients (32%) were dead at 30 days. Conclusion: More rigorous investigation of anaemia, increased use of alternative therapies and more restrictive approach to red cell transfusions are recommended. Clinicians should discuss the limited benefit versus potentially higher risks with patients in hospice services to inform treatment decisions. [ABSTRACT FROM AUTHOR]

Published
2019
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35. Characterising the growth in palliative care prescribing 2011-2015: Analysis of national medical and non-medical activity.

Author

Ziegler, Lucy, Bennett, Michael I., Mulvey, Matt, Hamilton, Tim, and Blenkinsopp, Alison

Subjects
*ATTITUDE (Psychology), *RESEARCH methodology, *MEDICAL personnel, *MEDICAL prescriptions, *NARCOTICS, *NURSES, *PALLIATIVE treatment, *PHARMACISTS, *GENERAL practitioners, *PHYSICIAN practice patterns, *TREATMENT duration, *NONOPIOID analgesics
Abstract

Background: The role of non-medical prescribers working in palliative care has been expanding in recent years and prescribers report improvements in patient care, patient safety, better use of health professionals' skills and more flexible team working. Despite this, there is a lack of empirical evidence to demonstrate its clinical and economic impact, limiting our understanding of the future role of non-medical prescribers within a healthcare system serving an increasing number of people with palliative care needs. Aim: We developed a unique methodology to establish the level of non-medical prescribers' activity in palliative care across England and consider the likely overall contribution these prescribers are making at a national level in this context in relation to medical prescribing. Setting/participants: All prescriptions for 10 core palliative care drugs prescribed by general practitioners, nurses and pharmacists in England and dispensed in the community between April 2011 and April 2015 were extracted from the Prescribing Analysis Cost Tool system. Design: The data were broken down by prescriber and basic descriptive analysis of prescription frequencies by opioid, non-opioids and total prescriptions by year were undertaken. To evaluate the yearly growth of non-medical prescribers, the total number of prescriptions was compared by year for each prescribing group. Results: Non-medical prescribers issued prescriptions rose by 28% per year compared to 9% in those issued by medical prescribers. Despite this, the annual growth in non-medical prescribers prescriptions was less than 1% a year in relation to total community palliative care prescribing activity in England. Impact on medical prescribing is therefore minimal. [ABSTRACT FROM AUTHOR]

Published
2018
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36. Identifying professionals’ needs in integrating electronic pain monitoring in community palliative care services: An interview study.

Author

Taylor, Sally, Allsop, Matthew J., Bekker, Hilary L., Bennett, Michael I., and Bewick, Bridgette M.

Subjects
COMMUNITY health services, INTERVIEWING, PALLIATIVE treatment, PATIENT monitoring, PAIN management, QUALITATIVE research, JUDGMENT sampling, PAIN measurement, THEMATIC analysis, DATA analysis software
Abstract

Background: Poor pain assessment is a barrier to effective pain control. There is growing interest internationally in the development and implementation of remote monitoring technologies to enhance assessment in cancer and chronic disease contexts. Findings describe the development and testing of pain monitoring systems, but research identifying the needs of health professionals to implement routine monitoring systems within clinical practice is limited. Aim: To inform the development and implementation strategy of an electronic pain monitoring system, PainCheck, by understanding palliative care professionals’ needs when integrating PainCheck into routine clinical practice. Design: Qualitative study using face-to-face interviews. Data were analysed using framework analysis Setting/participants: Purposive sample of health professionals managing the palliative care of patients living in the community Results: A total of 15 interviews with health professionals took place. Three meta-themes emerged from the data: (1) uncertainties about integration of PainCheck and changes to current practice, (2) appraisal of current practice and (3) pain management is everybody’s responsibility Conclusion: Even the most sceptical of health professionals could see the potential benefits of implementing an electronic patient-reported pain monitoring system. Health professionals have reservations about how PainCheck would work in practice. For optimal use, PainCheck needs embedding within existing electronic health records. Electronic pain monitoring systems have the potential to enable professionals to support patients’ pain management more effectively but only when barriers to implementation are appropriately identified and addressed. [ABSTRACT FROM AUTHOR]

Published
2017
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42. Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation.

Author

Allsop MJ, Kite S, McDermott S, Penn N, Millares-Martin P, and Bennett MI

Subjects
Adult, Aged, Aged, 80 and over, Humans, Middle Aged, United Kingdom, Continuity of Patient Care organization & administration, Continuity of Patient Care statistics & numerical data, Documentation methods, Electronic Health Records organization & administration, Electronic Health Records statistics & numerical data, Palliative Care methods, Terminal Care methods
Abstract

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed., Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services., Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes., Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths ( n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use., Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems., Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.

Published
2017
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