Why take the chance? A qualitative grounded theory study of nocturnal haemodialysis recipients who decline kidney transplantation

Rosenthal, Meagen; Molzahn, Anita; Chan, Christopher T.; Cockfield, S.; Kim, S Joseph

doi:10.1136/bmjopen-2016-011951

Cited by 8 publications

(15 citation statements)

References 18 publications

(16 reference statements)

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“… 23 One study reported that patients on home HD were reluctant to undergo a kidney transplant (considered the gold standard treatment in renal replacement therapy [RRT]) as they believed that there was little additional benefit from their current health status and the potential risks of transplantation were not worth the risk. 32 …”

Section: Resultsmentioning

confidence: 99%

Home hemodialysis: a comprehensive review of patient-centered and economic considerations

Walker¹,

Howard²,

Morton³

2017

CEOR

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Internationally, the number of patients requiring treatment for end-stage kidney disease (ESKD) continues to increase, placing substantial burden on health systems and patients. Home hemodialysis (HD) has fluctuated in its popularity, and the rates of home HD vary considerably between and within countries although there is evidence suggesting a number of clinical, survival, economic, and quality of life (QoL) advantages associated with this treatment. International guidelines encourage shared decision making between patients and clinicians for the type of dialysis, with an emphasis on a treatment that aligned to the patients’ lifestyle. This is a comprehensive literature review of patient-centered and economic impacts of home HD with the studies published between January 2000 and July 2016. Data from the primary studies representing both efficiency and equity of home HD were presented as a narrative synthesis under the following topics: advantages to patients, barriers to patients, economic factors influencing patients, cost-effectiveness of home HD, and inequities in home HD delivery. There were a number of advantages for patients on home HD including improved survival and QoL and flexibility and potential for employment, compared to hospital HD. Similarly, there were several barriers to patients preferring or maintaining home HD, and the strategies to overcome these barriers were frequently reported. Good evidence reported that indigenous, low-income, and other socially disadvantaged individuals had reduced access to home HD compared to other forms of dialysis and that this situation compounds already-poor health outcomes on renal replacement therapy. Government policies that minimize barriers to home HD include reimbursement for dialysis-related out-of-pocket costs and employment-retention interventions for home HD patients and their family members. This review argues that home HD is a cost-effective treatment, and increasing the proportion of patients on this form of dialysis compared to hospital HD will result in a more equitable distribution of good health outcomes for individuals with ESKD.

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Section: Resultsmentioning

confidence: 99%

Home hemodialysis: a comprehensive review of patient-centered and economic considerations

Walker¹,

Howard²,

Morton³

2017

CEOR

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“…Nocturnal hemodialysis may hence improve intermediate outcomes[ 8 , 9 ] and possibly even survival, although mortality data remain inconsistent[ 10 , 11 ]. By dialyzing at night, patients save time during the day, and nocturnal hemodialysis has thus been reported to improve health-related quality of life[ 12 – 14 ], to such an extent that some patients may even choose to forgo transplantation[ 15 ].…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life compared between kidney transplantation and nocturnal hemodialysis

et al. 2018

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BackgroundHealth-related quality of life (HRQOL) is an important outcome measure in patients with end-stage renal disease. HRQOL is assumed to improve with kidney transplantation and also with nocturnal hemodialysis compared to conventional hemodialysis. However, there is no evidence regarding HRQOL to support the optimal treatment choice for patients on nocturnal hemodialysis who hesitate opting for transplantation. We therefore compared HRQOL between patients who were treated with kidney transplantation or nocturnal hemodialysis for one year.MethodsWe assessed HQROL using the Kidney Disease Quality of Life–Short Form questionnaire in a cross-sectional sample of patients who were treated with kidney transplantation (n = 41) or nocturnal hemodialysis (n = 31) for one year. All patients on nocturnal hemodialysis were transplantation candidates. Using linear regression, we compared HRQOL between kidney transplantation and nocturnal hemodialysis, and adjusted for age, sex, dialysis duration, cardiovascular disease, and presence of residual urine production.ResultsAt one year follow-up, mean age of the study population was 54 ±13 years, and median dialysis duration was 3.2 (IQR 2.1–5.0) years. Kidney transplantation was associated with significantly higher HRQOL on the domain “effects” compared to nocturnal hemodialysis (adjusted difference 12.0 points, 95% CI 3.9; 20.1). There were potentially clinically relevant differences between kidney transplantation and nocturnal hemodialysis on the domains “burden” (adjusted difference 11.1 points, 95% CI -2.6; 24.8), “social support” (adjusted difference 6.2, 95% CI -6.6; 19.1), and the physical composite score (adjusted difference 3.0, 95% CI -2.0; 8.1), but these were not significant.ConclusionsAfter kidney transplantation, HRQOL is especially higher on the domain “effects of kidney disease” compared to nocturnal hemodialysis. This can be useful when counseling patients on nocturnal hemodialysis who may opt for transplantation.

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“…Some, mainly younger patients, preferred and chose to delay transplantation for specific reasons; for example, to finish higher education; wait and recover from surgeries; or wait to retire due to financial restrictions 40 42 49 50. Women reported responsibilities of taking care of their children or wanting to wait for their children to be older before considering kidney transplantation 50…”

Section: Resultsmentioning

confidence: 99%

Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis

et al. 2023

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ObjectivesTo synthesise qualitative research exploring patients’ perspectives, experiences and factors influencing their decision-making preferences when choosing or declining kidney transplantation.DesignA qualitative evidence synthesis.Data sourcesElectronic databases were searched from 2000 to June 2021: PubMed, MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, ProQuest Core Databases for Dissertations and Theses, and Google Scholar.Eligibility criteriaQualitative studies exploring and reporting decision-making preferences of people with kidney disease, which reported influencing factors when choosing or declining kidney transplantation, published in English from high-income and middle-income countries.Data extraction and synthesisTitles were screened against the inclusion criteria. Thematic synthesis was done with the use of the Critical Appraisal Skills Programme qualitative checklist to assess study quality, and assessment of confidence in the qualitative findings was done using the Grading of Recommendation, Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative Research.Findings37 studies from 11 countries reported the perspectives of 1366 patients with kidney disease. Six descriptive themes were developed: decisional preferences influenced patients’ readiness to pursue kidney transplantation, gathering sufficient information to support decision-making, navigating the kidney transplant assessment pathway, desire for kidney transplantation, opposed to kidney transplantation and uncertainties while waiting for the kidney transplant. A new enhanced theoretical model was developed to aid understanding of the complexities of decision-making in people with kidney disease, by integrating the Theory of Planned Behaviour and the Adaptive Decision Maker Framework to incorporate the novel findings.ConclusionThe synthesis provides a better understanding of the extremely complex decision-making processes of people with kidney disease, which are aligned to their kidney transplantation preferences. Further research is needed to better understand the reasons for declining kidney transplantation, and to underpin development of personalised information, interventions and support for patients to make informed decisions when presented with kidney replacement options.PROSPERO registration numberCRD42021272588.

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Why take the chance? A qualitative grounded theory study of nocturnal haemodialysis recipients who decline kidney transplantation

Cited by 8 publications

References 18 publications

Home hemodialysis: a comprehensive review of patient-centered and economic considerations

Home hemodialysis: a comprehensive review of patient-centered and economic considerations

Health-related quality of life compared between kidney transplantation and nocturnal hemodialysis

Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis

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