Measures of treatment burden in dialysis: A scoping review.
dialysis
health inequality
measures
scoping review
treatment burden
Journal
Journal of renal care
ISSN: 1755-6686
Titre abrégé: J Ren Care
Pays: United States
ID NLM: 101392167
Informations de publication
Date de publication:
12 Sep 2023
12 Sep 2023
Historique:
revised:
16
08
2023
received:
26
01
2023
accepted:
01
09
2023
medline:
12
9
2023
pubmed:
12
9
2023
entrez:
12
9
2023
Statut:
aheadofprint
Résumé
Dialysis is a life-sustaining treatment for patients with advanced kidney failure, but it is extremely burdensome. Despite this, there are very few tools available to assess treatment burden within the dialysis population. To conduct a scoping review of generic and disease-specific measures of treatment burden in chronic kidney disease, and assess their suitability for use within the dialysis population. We searched CINAHL, MEDLINE and the Cochrane Library for kidney disease-specific measures of treatment burden. Studies were initially included if they described the development, validation or use of a treatment burden measure or associated concept (e.g., measures of treatment satisfaction, quality of life, illness intrusiveness, disease burden etc.) in adult patients with chronic kidney disease. We also updated a previous scoping review exploring measures of treatment burden in chronic disease to identify generic treatment burden measures. One-hundred and two measures of treatment burden or associated concepts were identified. Four direct measures and two indirect measures of treatment burden were assessed, using adapted established criteria, for suitability for use within the dialysis population. The researchers outlined eight key dimensions of treatment burden: medication, financial, administrative, lifestyle, health care, time/travel, dialysis-specific factors, and health inequality. None of the measures adequately assessed all dimensions of treatment burden. Current measures of treatment burden in dialysis are inadequate to capture the spectrum of issues that matter to patients. There is a need for dialysis-specific burdens and health inequality to be assessed when exploring treatment burden to advance patient care.
Sections du résumé
BACKGROUND
BACKGROUND
Dialysis is a life-sustaining treatment for patients with advanced kidney failure, but it is extremely burdensome. Despite this, there are very few tools available to assess treatment burden within the dialysis population.
OBJECTIVE
OBJECTIVE
To conduct a scoping review of generic and disease-specific measures of treatment burden in chronic kidney disease, and assess their suitability for use within the dialysis population.
DESIGN
METHODS
We searched CINAHL, MEDLINE and the Cochrane Library for kidney disease-specific measures of treatment burden. Studies were initially included if they described the development, validation or use of a treatment burden measure or associated concept (e.g., measures of treatment satisfaction, quality of life, illness intrusiveness, disease burden etc.) in adult patients with chronic kidney disease. We also updated a previous scoping review exploring measures of treatment burden in chronic disease to identify generic treatment burden measures.
RESULTS
RESULTS
One-hundred and two measures of treatment burden or associated concepts were identified. Four direct measures and two indirect measures of treatment burden were assessed, using adapted established criteria, for suitability for use within the dialysis population. The researchers outlined eight key dimensions of treatment burden: medication, financial, administrative, lifestyle, health care, time/travel, dialysis-specific factors, and health inequality. None of the measures adequately assessed all dimensions of treatment burden.
CONCLUSION
CONCLUSIONS
Current measures of treatment burden in dialysis are inadequate to capture the spectrum of issues that matter to patients. There is a need for dialysis-specific burdens and health inequality to be assessed when exploring treatment burden to advance patient care.
Types de publication
Journal Article
Review
Langues
eng
Informations de copyright
© 2023 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association.
Références
Antoun, J., Brown, D.J., Jones, D.J., Clarkson, B.J., Shepherd, A.I., Sangala, N.C. et al. (2022) Exploring patients' experiences of the impact of dialysis therapies on quality of life and wellbeing. Journal of Renal Care, 49(1), 15-23. Available from: https://doi.org/10.1111/jorc.12416
Baldree, K.S., Murphy, S.P. & Powers, M.J. (1982) Stress identification and coping patterns in patients on hemodialysis. Nursing Research, 31(2), 107-112.
Boyd, C.M., Wolff, J.L., Giovannetti, E., Reider, L., Weiss, C., Xue, Q. et al. (2014) Health care task difficulty among older adults with multimorbidity. Medical Care, 52, S118-S125. Available from: https://doi.org/10.1097/MLR.0b013e3182a977da
Caplin, B., Kumar, S. & Davenport, A. (2011) Patients' perspective of haemodialysis-associated symptoms. Nephrology Dialysis Transplantation, 26(8), 2656-2663. Available from: https://doi.org/10.1093/ndt/gfq763
Dahlgren, G. & Whitehead, M. (2007) European strategies for tackling social inequalities in health: Levelling up Part 2. Copenhagen: World Health Organisation.
Devins, G.M. (2010) Using the illness intrusiveness ratings scale to understand health-related quality of life in chronic disease. Journal of Psychosomatic Research, 68(6), 591-602. Available from: https://doi.org/10.1016/j.jpsychores.2009.05.006
Dobler, C.C., Harb, N., Maguire, C.A., Armour, C.L., Coleman, C. & Murad, M.H. (2018) Treatment burden should be included in clinical practice guidelines. BMJ, 363, k4065. Available from: https://doi.org/10.1136/bmj.k4065
Duncan, P., Murphy, M., Man, M.S., Chaplin, K., Gaunt, D. & Salisbury, C. (2020) Development and validation of the multimorbidity treatment burden questionnaire (MTBQ). BMJ Open, 8(4), e019413. Available from: https://doi.org/10.1136/bmjopen-2017-019413
Eton, D., Elraiyah, T.A., Yost, K., Ridgeway, J., Johnson, A., Egginton, J. et al. (2013) A systematic review of patient-reported measures of burden of treatment in three chronic diseases. Patient Related Outcome Measures, 4, 7-20. Available from: https://doi.org/10.2147/PROM.S44694
Eton, D.T., Yost, K.J., Lai, J., Ridgeway, J.L., Egginton, J.S., Rosedahl, J.K. et al. (2017) Development and validation of the patient experience with treatment and self-management (PETS): a patient-reported measure of treatment burden. Quality of Life Research, 26(2), 489-503. Available from: https://doi.org/10.1007/s11136-016-1397-0
Evangelidis, N., Tong, A., Manns, B., Hemmelgarn, B., Wheeler, D.C., Tugwell, P. et al. (2017) Developing a set of core outcomes for trials in hemodialysis: an international delphi survey. American Journal of Kidney Diseases, 70, 464-475. Available from: https://doi.org/10.1053/j.ajkd.2016.11.029
Finnegan-John, J. & Thomas, V.J. (2013) The psychosocial experience of patients with end-stage renal disease and its impact on quality of life: findings from a needs assessment to shape a service. ISRN Nephrology, 2013, 1-8. Available from: https://doi.org/10.5402/2013/308986
Hays, R.D., Kallich, J.D., Mapes, D.L., Coons, S.J. & Carter, W.B. (1994) Development of the kidney disease quality of life (KDQOLTM) instrument. Quality of Life Research, 3, 329-338. Available from: https://doi.org/10.1007/BF00451725
Jacquet, S. & Trinh, E. (2019) The potential burden of home dialysis on patients and caregivers: a narrative review. Canadian Journal of Kidney Health and Disease, 6, 2054358119893335. Available from: https://doi.org/10.1177/2054358119893335
Karamanidou, C., Weinman, J. & Horne, R. (2014) A qualitative study of treatment burden among haemodialysis recipients. Journal of Health Psychology, 19(4), 556-569. Available from: https://doi.org/10.1177/1359105313475898
Kidney Research UK. (2018) Kidney health inequalities in the United Kingdom: Reflecting on the past, reducing in the future. Available at: www.kidneyresearchuk.org/research/renal-reports [Accessed 23th November 22].
Koo, T.K. & Li, M.Y. (2016) A guideline of selecting and reporting intraclass correlation coefficients for reliability research. Journal of Chiropractic Medicine, 15(2), 155-163. Available from: https://doi.org/10.1016/j.jcm.2016.02.012
May, C., Montori, V.M. & Mair, F.S. (2009) We need minimally disruptive medicine. BMJ, 339, b2803. https://doi.org/10.1136/bmj.b2803
May, C.R., Cummings, A., Myall, M., Harvey, J., Pope, C., Griffiths, P. et al. (2016) Experiences of long-term life-limiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease? BMJ Open, 6, e011694. Available from: https://doi.org/10.1136/bmjopen-2016-011694
Montori, V.M. (2019) Turning away from industrial health care toward careful and kind care. Academic Medicine, 94(6), 768-770. Available from: https://doi.org/10.1097/ACM.0000000000002534
Munn, Z., Peters, M.D.J., Stern, C., Tufanaru, C., McArthur, A. & Aromataris, E. (2018) Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Medical Research Methodology, 18, 143. Available from: https://doi.org/10.1186/s12874-018-0611-x
Murphy, S.P., Powers, M.J. & Jalowiec, A. (1985) Psychometric evaluation of the hemodialysis stressor scale. Nursing Research, 34(6), 368-371. Available from: https://doi.org/10.1097/00006199-198511000-00018
Ouzzani, M., Hammady, H., Fedorowicz, Z., & Elmagarmid, A. (2016) Rayyan-a web and mobile app for systematic reviews. Systematic Reviews, 5, 210. Available from: https://doi.org/10.1186/s13643-016-0384-4
Peipert, J.D., Bentler, P.M., Klicko, K. & Hays, R.D. (2018) Psychometric properties of the kidney disease quality of life 36-item short-form survey (KDQOL-36) in the United States. American Journal of Kidney Diseases, 71(4), 461-468. Available from: https://doi.org/10.1053/j.ajkd.2017.07.020
Peters, M.D.J. (2017) Chapter 11: Scoping Reviews. In: Aromataris, E. & Munn, Z. (Eds.) Joanna Briggs Institute Reviewer's Manual. https://reviewersmanual.joannabriggs.org
Purcell, L., Schnitker, J., Moore, T., Pena, A., Love, M., Ford, A.I. et al. (2023) ‘Health inequities in dialysis care: a scoping review’. In Oklahoma State University Center for Health Sciences Research Week 2023. 13-17 February. Available at: https://youtu.be/ja-2strLgu4
Roberti, J., Cummings, A., Myall, M., Harvey, J., Lippiett, K., Hunt, K. et al. (2018) Work of being an adult patient with chronic kidney disease: a systematic review of qualitative studies. BMJ Open, 8(9), e023507. Available from: https://doi.org/10.1136/bmjopen-2018-023507
Sav, A., Salehi, A., Mair, F.S. & McMillan, S.S. (2017) Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature. BMC Medical Research Methodology, 17, 140. Available from: https://doi.org/10.1186/s12874-017-0411-8
Shahrokhi, Z., Rayyani, M., Sabzevari, S. & Haghdoost, M.M. (2014) Stressors and coping strategies in dialysis patients. Iranian Journal of Critical Care Nursing, 7(3), 184-193.
Shippee, N.D., Shah, N.D., May, C.R., Mair, F.S. & Montori, V.M. (2012) Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. Journal of Clinical Epidemiology, 65(10), 1041-1051. Available from: https://doi.org/10.1016/j.jclinepi.2012.05.005
Tran, V.T., Harrington, M., Montori, V.M., Barnes, C., Wicks, P. & Ravaud, P. (2014) Adaptation and validation of the treatment burden questionnaire (TBQ) in English using an Internet platform. BMC Medicine, 12, 109. Available from: https://doi.org/10.1186/1741-7015-12-109
Tricco, A.C., Lillie, E., Zarin, W., O'Brien, K.K., Colquhoun, H., Levac, D. et al. (2018) PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Annals of Internal Medicine, 169(7), 467-473. Available from: https://doi.org/10.7326/M18-0850
Williams, E., Buck, D., Babalola, G. & Maguire, D. (2022) What are health inequalities? Available at: https://www.kingsfund.org.uk/publications/what-are-health-inequalities [Accessed 6th April 2023].