Patient-reported outcome measures for life participation in patients with chronic kidney disease: a systematic review

被引：1

作者：

Hughes, Anastasia ^{[1
,2
]}

Ju, Angela ^{[1
,2
]}

Cazzolli, Rosanna ^{[1
,2
]}

Howell, Martin ^{[1
,2
,3
]}

Caskey, Fergus J. ^{[4
]}

Elliott, Meghan J. ^{[5
]}

Farragher, Janine ^{[6
]}

Greenwood, Sharlene ^{[7
,8
]}

Levin, Adeera ^{[9
]}

Manera, Karine ^{[1
,2
]}

Sluiter, Amanda ^{[1
,2
]}

Teixeira-Pinto, Armando ^{[1
,2
]}

Trimarchi, Hernan ^{[10
]}

Wang, Bill ^{[11
]}

Guha, Chandana ^{[1
,2
]}

Wu, Rebecca ^{[1
,2
]}

Jaure, Allison ^{[1
,2
]}

机构：

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

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

[3] Univ Sydney, Menzies Ctr Hlth Policy & Econ, Sydney, NSW, Australia

[4] Univ Bristol, Bristol Med Sch, Bristol, England

[5] Univ Calgary, Calgary, AB, Canada

[6] Univ Toronto, Dept Occupat Sci & Occupat Therapy, Toronto, ON, Canada

[7] Kings Coll Hosp NHS Trust, London, England

[8] Kings Coll London, London, England

[9] Univ British Columbia, Div Nephrol, Vancouver, BC, Canada

[10] Hosp Britanico Buenos Aires, Nephrol Serv, Kidney Transplant Unit, Buenos Aires, Argentina

[11] Patient Liaison Advisory Grp, Int Soc Nephrol, Brussels, Belgium

来源：

CLINICAL KIDNEY JOURNAL | 2025年 / 18卷 / 01期

基金：

英国医学研究理事会;

关键词：

CKD; kidney disease; life participation; PROMs; PROs; QUALITY-OF-LIFE; INSTRUMENTAL ACTIVITIES; DISABILITY INSTRUMENT; SOCIAL-PARTICIPATION; HEALTH; CKD; TRANSPLANTATION; QUESTIONNAIRE; IMPAIRMENT; VALIDATION;

D O I：

10.1093/ckj/sfae341

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 The symptoms, comorbidities and treatment burden associated with chronic kidney disease (CKD) can be debilitating and limit life participation in patients with CKD not requiring kidney replacement therapy (KRT). The aim of this study was to identify the characteristics, content and psychometric properties of patient-reported outcome measures (PROMs) used to assess life participation in patients with CKD.Methods We searched MEDLINE, Embase, PsycINFO and CINAHL from database inception to February 2023 for all studies that reported life participation in patients with CKD (stages 1-5 not requiring kidney replacement therapy). We analysed the characteristics, dimensions of life participation and psychometric properties of the measures.Results From the 114 studies included, 20 (18%) were randomized trials, 3 (3%) were non-randomized trials and 91 (80%) were observational studies. Forty-one different measures were used to assess life participation, of which six (15%) were author-developed measures. Twelve (29%) measures assessed life participation specifically, while 29 (71%) measures assessed broader constructs such as quality of life, which included questions relevant to life participation. The 36-Item Short Form Health Survey (SF-36) and Kidney Disease Quality of Life Short Form (KDQOL-SF) were the most frequently used, in 39 (34%) and 24 (21%) studies, respectively. Many content domains for life participation were assessed, including physical activities (walking, running and sports), social activities, leisure activities, work or study and self-care. None of the measures for life participation were developed specifically for CKD. Four measures (EuroQol 5-dimension 3-level (EQ-5D-3L), Functional Assessment of Cancer Therapy - Anemia, Short Form 6-dimension and Short-From 36-dimension (SF-36)) had validation data collected in patients with CKD.Conclusion The measures for life participation used in patients with CKD vary in content, with few validated in the CKD population. There is a need for a validated measure to assess life participation in a meaningful and consistent way in all patients with CKD worldwide.

引用

页数：14

共 69 条

[1]

Ability Lab, 2023, Human Activity Profile

[2] Development of a self-report measure of capability wellbeing for adults: the ICECAP-A [J].

Al-Janabi, Hareth ;

Flynn, Terry N. ;

Coast, Joanna .

QUALITY OF LIFE RESEARCH, 2012, 21 (01) :167-176

[3] THE SICKNESS IMPACT PROFILE - DEVELOPMENT AND FINAL REVISION OF A HEALTH-STATUS MEASURE [J].

BERGNER, M ;

BOBBITT, RA ;

CARTER, WB ;

GILSON, BS .

MEDICAL CARE, 1981, 19 (08) :787-805

[4] The estimation of a preference-based measure of health from the SF-36 [J].

Brazier, J ;

Roberts, J ;

Deverill, M .

JOURNAL OF HEALTH ECONOMICS, 2002, 21 (02) :271-292

[5] Symptom Management of the Patient with CKD: The Role of Dialysis [J].

Cabrera, Valerie Jorge ;

Hansson, Joni ;

Kliger, Alan S. ;

Finkelstein, Fredric O. .

CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY, 2017, 12 (04) :687-693

[6] Why does quality of life remain an under-investigated issue in chronic kidney disease and why is it rarely set as an outcome measure in trials in this population? [J].

Chong, Kelly ;

Unruh, Mark .

NEPHROLOGY DIALYSIS TRANSPLANTATION, 2017, 32 :47-52

[7] Validity of the International Physical Activity Questionnaire (IPAQ) for assessing moderate-to-vigorous physical activity and sedentary behaviour of older adults in the United Kingdom [J].

Cleland, Claire ;

Ferguson, Sara ;

Ellis, Geraint ;

Hunter, Ruth F. .

BMC MEDICAL RESEARCH METHODOLOGY, 2018, 18

[8]

Collin C, 1988, Int Disabil Stud, V10, P61

[9]

Comet Initiative, 2023, Core outcome measures in effectiveness trials

[10]

COSMIN, 2023, Guideline for selecting instruments for a core outcome set

← 1 2 3 4 5 6 7 →