Establishing a core outcome measure for life participation: a Standardized outcomes in Nephrology – kidney transplantation (SONG-Tx) consensus workshop report
| العنوان: | Establishing a core outcome measure for life participation: a Standardized outcomes in Nephrology – kidney transplantation (SONG-Tx) consensus workshop report |
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| المؤلفون: | Benita Padilla, Kai Ming Chow, Roslyn B. Mannon, Rainer Oberbauer, Bénédicte Sautenet, Camilla S. Hanson, Steve Chadban, Emilio D. Poggio, Michelle A. Josephson, Lorna Marson, Krista L. Lentine, Karine E. Manera, Jonathan C. Craig, Angela Ju, Greg Knoll, Barbara Murphy, Allison Tong |
| المساهمون: | MethodS in Patients-centered outcomes and HEalth ResEarch (SPHERE), Université de Tours-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques, Université de Nantes (UN)-Université de Nantes (UN), Université de Tours (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques |
| المصدر: | Transplantation Transplantation, 2018, 102 (8), pp.1358-1366. ⟨10.1097/TP.0000000000002125⟩ Tong, A, Sautenet, B, Poggio, E D, Lentine, K L, Oberbauer, R, Mannon, R, Murphy, B, Padilla, B, Chow, K M, Marson, L, Chadban, S, Craig, J C, Ju, A, Manera, K E, Hanson, C S, Josephson, M A & Knoll, G 2018, ' Establishing a Core Outcome Measure for Graft Health : A Standardized Outcomes in Nephrology-Kidney Transplantation (SONG-Tx) Consensus Workshop Report ', Transplantation, vol. 102, no. 8, pp. 1358-1366 . https://doi.org/10.1097/TP.0000000000002125 |
| بيانات النشر: | Lippincott, Williams & Wilkins, 2018. |
| سنة النشر: | 2018 |
| مصطلحات موضوعية: | Nephrology, medicine.medical_specialty, medicine.medical_treatment, [SDV]Life Sciences [q-bio], Decision Making, 030232 urology & nephrology, MEDLINE, 030230 surgery, Graft loss, Nephrectomy, 03 medical and health sciences, 0302 clinical medicine, Internal medicine, medicine, Humans, Renal replacement therapy, Registries, Intensive care medicine, Kidney transplantation, Transplantation, business.industry, Graft Survival, Outcome measures, Follow up studies, Congresses as Topic, medicine.disease, Kidney Transplantation, 3. Good health, Renal Replacement Therapy, surgical procedures, operative, Treatment Outcome, business, Software, Follow-Up Studies |
| الوصف: | Background: Kidney transplantation confers substantial survival and quality of life benefits for many patients with end-stage kidney disease compared with dialysis but complications and side-effects of immunosuppression can impair participation in daily life activities. Life participation is a critically important patient-reported outcome for kidney transplant recipients but it is inconsistently and infrequently measured in trials. We convened a consensus workshop on establishing a core outcome measure for life participation for use in all trials in kidney transplantation. Methods: Twenty-five (43%) kidney transplant recipients/caregivers and 33 (57%) health professionals from eight countries participated in six facilitated breakout group discussions. Transcripts were analyzed thematically. Results: Four themes were identified. Returning to normality conveyed the patients’ goals to fulfill their given roles (i.e. in their family, work, and community) and re-establish a normal lifestyle after transplant. Recognizing the diverse meaning and activities of ‘life’ explicitly acknowledged life participation as a subjective concept that could refer to different activities (e.g. employment, recreation, family duties) for each individual patient. Capturing vulnerability and fluctuations post-transplant (e.g. due to complications and side-effects) distinguished between experiences in the first year post-transplant and the long-term impact of transplantation. Having a scientifically rigorous, feasible and meaningful measure was expected to enable consistent and frequent assessment of life participation in trials in kidney transplantation. Conclusions: A feasible and validated core outcome measure for life participation is needed so critically important patient-reported outcome can be consistently and meaningfully assessed in trials in kidney transplantation to inform decision-making and care of recipients. |
| وصف الملف: | application/pdf |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::111211a5f240844759eb34419f5efed7 https://ora.ox.ac.uk/objects/uuid:4bbc1eb3-0d7a-4203-aac7-1b9d45460ee3 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....111211a5f240844759eb34419f5efed7 |
| قاعدة البيانات: | OpenAIRE |
| الوصف غير متاح. |