Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

Walker, Rachael; Howard, Kirsten; Morton, Rachael L.; Palmer, Suetonia C.; Marshall, Mark R.; Tong, Allison

doi:10.1093/ndt/gfv330

Cited by 96 publications

(166 citation statements)

References 39 publications

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“…This is consistent with qualitative data suggesting that the preference for increased nursing support is important during the period of transition to home-based dialysis, when patients are at their most apprehensive and least confident with the treatment (23). Patient preferences for increased nursing support are also consistent with our finding that patients preferred longer training times.…”

Section: Discussionsupporting

confidence: 90%

“…Extended, rather than shorter, training times were also preferred in a previous study (25). It has been established that patients contemplating and performing home dialysis have concerns around safety, isolation, and support (8,9,12,23) and that addressing perceived need for increased support and longer training may help to allay these concerns and support home dialysis.…”

Section: Discussionmentioning

confidence: 99%

“…The attributes and levels used to describe each dialysis alternative were on the basis of our prior research, including qualitative interviews with patients (13,23) and thematic syntheses of patient and caregiver values, beliefs, and experiences when considering home dialysis (8,9). Levels for patient survival were obtained from the Australia New Zealand Dialysis and Transplant Registry (24) to include a range of plausible values.…”

Section: Attributesmentioning

confidence: 99%

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A Discrete Choice Study of Patient Preferences for Dialysis Modalities

Walker

Morton

Palmer

et al. 2017

CJASN

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Background and objectives Improved knowledge about factors that influence patient choices when considering dialysis modality could facilitate health care interventions to increase rates of home dialysis. We aimed to quantify the attributes of dialysis care and the tradeoffs that patients consider when making decisions about dialysis modalities.Design, setting, participants, & measurements We conducted a prospective, discrete choice experiment survey with random parameter logit analysis to quantify preferences and tradeoffs for attributes of dialysis treatment in 143 adult patients with CKD expected to require RRT within 12 months (predialysis). The attributes included schedule flexibility, patient out of pocket costs, subsidized transport services, level of nursing support, life expectancy, dialysis training time, wellbeing on dialysis, and dialysis schedule (frequency and duration). We reported outcomes using b-coefficients with corresponding odds ratios and 95% confidence intervals for choosing home-based dialysis (peritoneal dialysis or hemodialysis) compared with facility hemodialysis.Results Home-based therapies were significantly preferred with the following attributes: longer survival (odds ratio per year, 1.63; 95% confidence interval, 1.25 to 2.12), increased treatment flexibility (odds ratio, 9.22; 95% confidence interval, 2.71 to 31.3), improved wellbeing (odds ratio, 210; 95% confidence interval, 15 to 2489), and more nursing support (odds ratio, 87.3; 95% confidence interval, 3.8 to 2014).

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Section: Discussionsupporting

confidence: 90%

Section: Discussionmentioning

confidence: 99%

Section: Attributesmentioning

confidence: 99%

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A Discrete Choice Study of Patient Preferences for Dialysis Modalities

Walker

Morton

Palmer

et al. 2017

CJASN

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“…The experience of other patients is important in treatment choice and considering home dialysis as a treatment option [42,43]. From these aspects timely offering of treatment options (including conservative care), structured pre-dialysis education, and reassurance from peers is essential for improving utilization of home dialysis.…”

Section: Options Advantages and Future Of Assisted Pdmentioning

confidence: 99%

Implementing Assisted Peritoneal Dialysis in Renal Care: a Chinese-German Perspective

Pommer

Zhang

et al. 2018

Kidney Blood Press Res

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Assisted PD (assPD) is an option of home dialysis treatment for dependent end-stage renal patients and worldwide applied in different countries since more than 40 years. China and Germany shares similar trends in demographic development with a growing proportion of elderly referred to dialysis treatment. So far number of patients treated by assPD is low in both countries. We analyze experiences in the implementation process, barriers, and benefits of ass PD in the aging population to provide a model for sustainable home dialysis treatment with PD in both countries. Differences and similarities of different factors (industrial, patient and facility based) which affect utilization of assPD are discussed. AssPD should be promoted in China and Germany to realize the benefits of home dialysis for the aging population by providing a structured model of implementation and quality assurance.

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“…(25) This sentiment is echoed in more recent qualitative studies describing the experiences and perspectives of caregivers and family members of patients with advanced kidney disease as they pertain to specific treatments (e.g., hemodialysis, supportive care) (26)(27)(28)(29)(30)(31), advance care planning (ACP) (32), and end-of-life care (33)(34)(35). To our knowledge, no prior studies have attempted to characterize more broadly the experiences of family members and friends of patients with advanced kidney disease.…”

Section: Introductionmentioning

confidence: 99%

“Maybe They Don't Even Know That I Exist”: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease

O’Hare

Szarka

McFarland

et al. 2017

CJASN

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Background and objectives Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease.Design, setting, participants, & measurements As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes. ResultsThe following three themes emerged from interviews with patients' family members and friends: (1) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; (2) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient.Conclusions Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.

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Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

Cited by 96 publications

References 39 publications

A Discrete Choice Study of Patient Preferences for Dialysis Modalities

A Discrete Choice Study of Patient Preferences for Dialysis Modalities

Implementing Assisted Peritoneal Dialysis in Renal Care: a Chinese-German Perspective

“Maybe They Don't Even Know That I Exist”: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease

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