Article Text
PDF
Abstract
Introduction Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT).
Methods Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers. Searches were conducted in MEDLINE, Embase, CINAHL Plus, PsycINFO, Scopus, Scientific Electronic Library Online and Red de Revistas Científicas de América Latina y el Caribe, España y Portugal. Content was analysed with theoretical framework using middle-range theories.
Results Searches resulted in 260 studies from 30 countries (5115 patients and 1071 carers). Socioeconomic status was central to the experience of CKD, especially in its advanced stages when renal replacement treatment is necessary. Unfunded healthcare was fragmented and of indeterminate duration, with patients often depending on emergency care. Treatment could lead to unemployment, and in turn, to uninsurance or underinsurance. Patients feared catastrophic events because of diminished financial capacity and made strenuous efforts to prevent them. Transportation to and from haemodialysis centre, with variable availability and cost, was a common problem, aggravated for patients in non-urban areas, or with young children, and low resources. Additional work for those uninsured or underinsured included fund-raising. Transplanted patients needed to manage finances and responsibilities in an uncertain context. Information on the disease, treatment options and immunosuppressants side effects was a widespread problem.
Conclusions Being a person with end-stage kidney disease always implied high burden, time-consuming, invasive and exhausting tasks, impacting on all aspects of patients' and caregivers’ lives. Further research on BoT could inform healthcare professionals and policy makers about factors that shape patients’ trajectories and contribute towards a better illness experience for those living with CKD.
PROSPERO registration number CRD42014014547.
- treatment burden
- chronic kidney disease
- systematic review
- haemodialysis
- kidney transplant
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
Footnotes
Contributors JR drafted the paper. AC, MM, CRM and JH screened titles and abstracts in first search round. Full papers were screened by JH, KL, MM, KH and AC. JR performed database searches for update and extension of search. JR, JPA and FC screened updated results. JR, CRM and JPA performed content analysis. CRM, MM, AC and JPA critically reviewed the manuscript for important intellectual content; all authors approved the final version of the paper.
Funding The first stages of this project (EXPERTS1 Protocol, search strategy and meta review) were partially funded by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Wessex, which is a partnership between Wessex NHS organisations and partners and the University of Southampton.
Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.
Competing interests None declared.
Patient consent Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement EXPERTS1 Protocol is published in BMJ Open, with open access CRM, Masters J, Welch L, Hunt K, Pope C, Myall M, Griffiths P, Roderick P, Glanville J, Richardson A: EXPERTS1—experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study. BMJ Open 2015, 5(4):e007372. Meta-review of systematic reviews is published in BMJ Open, with open access CRM, Cummings A, Myall M, Harvey J, Pope C, Griffiths P, Roderick P, Arber M, Boehmer K, Mair FS et al: 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 2016, 6(10):e011694. Search strategy is included as supplementary file.