Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study

被引：232

作者：

Urquhart-Secord, Rachel ^{[1
,2
]}

Craig, Jonathan C. ^{[1
,2
]}

Hemmelgarn, Brenda ^{[3
,4
,5
,6
]}

Tam-Tham, Helen ^{[3
,4
,5
,6
]}

Manns, Braden ^{[3
,4
,5
,6
]}

Howell, Martin ^{[1
,2
]}

Polkinghorne, Kevan R. ^{[7
,8
,9
]}

Kerr, Peter G. ^{[7
,8
,9
]}

Harris, David C. ^{[10
]}

Thompson, Stephanie ^{[11
]}

Schick-Makaroff, Kara ^{[12
]}

Wheeler, David C. ^{[13
]}

van Biesen, Wim ^{[14
]}

Winkelmayer, Wolfgang C. ^{[15
]}

Johnson, David W. ^{[16
,17
,18
]}

Howard, Kirsten ^{[1
]}

Evangelidis, Nicole ^{[1
,2
]}

Tong, Allison ^{[1
,2
]}

机构：

[1] Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW, Australia

[2] Childrens Hosp Westmead, Ctr Kidney Res, Sydney, NSW 2145, Australia

[3] Univ Calgary, Dept Med, Calgary, AB, Canada

[4] Univ Calgary, Dept Community Hlth Sci, Calgary, AB, Canada

[5] Univ Calgary, Libin Cardiovasc Inst, Calgary, AB, Canada

[6] Univ Calgary, OBrien Inst Publ Hlth, Calgary, AB, Canada

[7] Monash Med Ctr, Clayton, Vic, Australia

[8] Monash Univ, Clayton, Vic, Australia

[9] Monash Univ, Dept Epidemiol & Preventat Med, Clayton, Vic, Australia

[10] Westmead Hosp, Ctr Transplantat & Renal Res, Sydney, NSW, Australia

[11] Univ Alberta, Dept Med, Edmonton, AB, Canada

[12] Univ Alberta, Fac Nursing, Edmonton, AB, Canada

[13] UCL, Ctr Nephrol, London, England

[14] Ghent Univ Hosp, Renal Div, Ghent, Belgium

[15] Baylor Coll Med, Selzman Inst Kidney Hlth, Nephrol Sect, Houston, TX USA

[16] Univ Queensland, Princess Alexandra Hosp, Queensland Sch Med, Brisbane, Qld, Australia

[17] Translat Res Inst, Brisbane, Qld, Australia

[18] Metro South & Ipswich Nephrol & Transplant Serv M, Brisbane, Qld, Australia

来源：

AMERICAN JOURNAL OF KIDNEY DISEASES | 2016年 / 68卷 / 03期

基金：

英国医学研究理事会;

关键词：

Patient-centered outcomes; hemodialysis; clinical research priorities; patients; caregivers; fatigue; quality of life; patient wellbeing; outcome measurement; surrogate end points; end-stage renal disease (ESRD); nominal group; focus group; qualitative research; CHRONIC KIDNEY-DISEASE; CARDIOVASCULAR-DISEASE; RENAL-DISEASE; CONSENSUS; PREFERENCES; DISPARITIES; PERSPECTIVE; NEPHROLOGY; WORKSHOP; PROTOCOL;

D O I：

10.1053/j.ajkd.2016.02.037

中图分类号：

R5 [内科学]; R69 [泌尿科学（泌尿生殖系疾病）];

学科分类号：

1002 ; 100201 ;

摘要：

Background: In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients' priorities. Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. Study Design: Nominal group technique. Setting & Participants: Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). Methodology: Identification and ranking of outcomes. Analytical Approach: Mean rank score (of 10) for top 10 outcomes and thematic analysis. Results: 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. Limitations: Only English-speaking participants were eligible. Conclusions: Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters. (C) 2016 by the National Kidney Foundation, Inc.

引用

页码：444 / 454

页数：11

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