Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in CKD

Tong, Allison; Cheung, Katharine L.; Nair, S.; Tamura, Manjula Kurella; Craig, Jonathan C.; Winkelmayer, Wolfgang C.

doi:10.1053/j.ajkd.2013.11.017

Cited by 84 publications

(96 citation statements)

References 54 publications

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“…Previous syntheses of qualitative research have explored the perspectives of patients with CKD on particular issues (including end of life care [10], vascular access [11], and dietary restrictions [12]) or specific patient groups, such as patients on peritoneal dialysis (13). Although most patients requiring dialysis treatment receive in-center hemodialysis, no previous qualitative synthesis has focused on their experiences.…”

Section: Introductionmentioning

confidence: 99%

A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis

Reid

Seymour

Jones

2016

CJASN

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Background and objectives Patients on in-center dialysis spend significant amounts of time in the dialysis unit; additionally, managing ESRD affects many aspects of life outside the dialysis unit. To improve the care provided to patients requiring hemodialysis, their experiences and beliefs regarding treatment must be understood. This systematic review aimed to synthesize the experiences of patients receiving in-center hemodialysis.Design, setting, participants, & measurements We searched Embase, MEDLINE, CINAHL, PsychINFO, Google Scholar, and reference lists for primary qualitative studies published from 1995 to 2015 that explored the experiences of adult patients receiving treatment with in-center hemodialysis. A thematic synthesis was conducted.Results Seventeen studies involving 576 patients were included in the synthesis. Four analytic themes were developed. The first theme (a new dialysis-dependent self) describes the changes in identity and perceptions of self that could result from dialysis dependence. The second theme (a restricted life) describes the physical and emotional constraints that patients described as a consequence of their dependence. Some patients reported strategies that allowed them to regain a sense of optimism and influence over the future, and these contributed to the third theme (regaining control). The first three themes describe a potential for change through acceptance, adaption, and regaining a sense of control. The final theme (relationships with health professionals) describes the importance of these relationships for in-center patients and their influence on perceptions of power and support. These relationships are seen to influence the other three themes through information sharing, continuity, and personalized support.Conclusions Our synthesis has resulted in a framework that can be used to consider interventions to improve patients' experiences of in-center hemodialysis care. Focusing on interventions that are incorporated into the established relationships that patients have with their health care professionals may enable patients to progress toward a sense of control and improve satisfaction with care.

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Section: Introductionmentioning

confidence: 99%

A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis

Reid

Seymour

Jones

2016

CJASN

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“…It is promising that the CMS has accepted "adult kidney disease: referral to hospice" as a measure under consideration in the 2014 Physician Quality Reporting System and that this measure is to be evaluated by the Measure Application Partnership (48). Studies of patients' perceptions of life in patients with CKD and ESRD and their top 10 priorities for research questions support the proposed quality metrics in Table 1 (16,38). Implementation of such measures will likely enhance the quality of care and quality of life for patients with ESRD.…”

Section: Proposed Patient-centered Quality Metrics For the Esrd Qipmentioning

confidence: 89%

“…They felt personally vulnerable and were negotiating existential tensions feeling that they were living on borrowed time. Patients on dialysis reported being ambivalent about continuing it (38). Another recent paper identifying priorities for research of patients on dialysis and caregivers found that one of their top 10 research questions was "What is the psychological and social impact of kidney failure on patients, their family, and other caregivers, and can this be reduced?"…”

Section: Domains Of Quality Measurement Particularly Relevant To the mentioning

confidence: 99%

“…None of the present or proposed ESRD QIP measures tap into patient and caregiver psychosocial and existential experiences of illness or measure the success of interventions to improve them. Furthermore, Tong et al (38), who wrote the thematic synthesis, recommended palliative care strategies to improve patient quality of life and experience of care. Others have similarly noted the top priority of palliative care for improving patient quality of life and reducing suffering (14,34,39).…”

Section: Domains Of Quality Measurement Particularly Relevant To the mentioning

confidence: 99%

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How the ESRD Quality Incentive Program Could Potentially Improve Quality of Life for Patients on Dialysis

Moss

Davison

2015

Clinical Journal of the American Society of Nephrology

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For over 20 years, the quality of medical care of the Medicare ESRD Program has been a concern. The Centers for Medicare and Medicaid Services have implemented the ESRD Quality Incentive Program, which uses the principles of value-based purchasing; dialysis providers are paid for performance on predefined quality measures, with a goal of improving patient outcomes and the quality of patient care. The ESRD Quality Incentive Program measures have been criticized, because they are largely disease oriented and use easy-to-obtain laboratory-based indicators, such as Kt/V and hemoglobin, that do not reflect outcomes that are most important to patients and have had a minimal effect on survival or quality of life. A key goal of improving quality of care is to enhance quality of life, a patient-important quality measure that matters more to many patients than even survival. None of the ESRD Quality Incentive Program measures assess patient-reported quality of life. As outlined in the National Quality Strategy, the Centers for Medicare and Medicaid Services are holding providers accountable in six priority domains, in which quality measures have been and are being developed for value-based purchasing. Three measures-patient experience and engagement, clinical care, and care coordination-are particularly relevant to quality care in the ESRD Program; the 2014 ESRD Quality Incentive Program includes six measures, none of which provide data from a patient-centered perspective. Valuebased purchasing is a well intentioned step to improve care of patients on dialysis. However, the Centers for Medicare and Medicaid Services need to implement significant change in what is measured for the ESRD Quality Incentive Program to be patient centered and aligned with patients' values, preferences, and needs. This paper provides examples of potential quality measures for patient experience and engagement, clinical care, and care coordination, which if implemented, would be much more likely to enhance quality of life for patients with ESRD than present ESRD Quality Incentive Program measures.Clin J Am Soc Nephrol 10: 888-893, 2015. doi: 10.2215/CJN.07410714 Concerns about Quality Care and Patient Quality of Life in the ESRD ProgramFor over 20 years, nephrologists and other researchers studying the Medicare ESRD Program have been concerned about the quality of medical care and the quality of life of patients on dialysis (1-4). The Centers for Medicare and Medicaid Services (CMS) have implemented value-based purchasing to improve quality in patient care (5). The CMS calls the ESRD Quality Incentive Program (QIP) their most recent step in fostering improved patient outcomes by establishing incentives for dialysis facilities to meet or exceed performance standards that the CMS has established (6). The ESRD QIP measures have been criticized, because they are disease oriented (7) and use easy-to-obtain laboratory-based indicators, such as Kt/V and hemoglobin, that do not reflect outcomes that are important to patients and that have had a m...

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“…The emergence of qualitative syntheses is increasingly apparent-even within nephrology. In the past 2 years alone, qualitative syntheses involving patients on dialysis have addressed specific topics, including dietary management (10), vascular access (11), waiting for a kidney transplant (12,13), and end of life decision making and care (14,15).…”

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confidence: 99%