Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study

Eneanya, Nwamaka D.; Labbe, Allison K.; Stallings, Taylor L.; Percy, Shananssa; Temel, Jennifer S.; Klaiman, Tamar; Park, Elyse R.

doi:10.1186/s12882-020-01870-1

Cited by 15 publications

(17 citation statements)

References 35 publications

(46 reference statements)

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“…Importantly, newer models of care, such as the Kidney Care Choices program, have emphasized patient activation and the role of kidney clinicians as "principal providers" for older patients with advanced CKD, encouraging greater participation in ACP. [30][31][32][33] Clearer institutional protocols and greater reimbursement for ACP may help. 34 In 2016, the CMS began offering reimbursement to clinicians for ACP discussions, although early data show minimal use by nephrologists.…”

Section: Discussionmentioning

confidence: 99%

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives

Ladin

Neckermann²,

D’Arcangelo³

et al. 2021

JASN

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BackgroundOlder patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement.MethodsIn semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4–5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data.ResultsWe conducted 68 semistructured interviews with 23 patients, 29 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients’ wishes are known).ConclusionsPatients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.

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Section: Discussionmentioning

confidence: 99%

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives

Ladin

Neckermann²,

D’Arcangelo³

et al. 2021

JASN

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“…[12][13][14] Prior qualitative research has identified the profound physical and emotional struggles of life with advanced CKD and the numerous barriers to engagement in advance care planning, reinforcing the presence of unmet palliative care needs in this population. [15][16][17][18] However, to the best of our knowledge, there has been no prior work exploring patient and caregiver experiences receiving ambulatory palliative care specific to kidney disease. We previously described patient demographics and clinical activities of an integrated ambulatory nephrology and palliative care clinical program at our institution called The Kidney CARES (Comprehensive Advanced Renal disease and ESRD Support) Program.…”

Section: Introductionmentioning

confidence: 99%

An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care

Bristol

Chaudhry

Assis

et al. 2021

Am J Hosp Palliat Care

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Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

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“…We conducted in-depth interviews with clinicians (nephrologists and primary care physicians), older patients and their caregivers at an academic medical centre in Boston, Massachusetts. 35 Specifically, we assessed interviewees’ prior experiences with discussions about kidney replacement therapies and ACP. We found that nephrologists and primary care physicians were mostly aligned with respect to their roles in discussing dialysis and ACP.…”

Section: Methodology and Analysismentioning

confidence: 99%

Integrating Conservative kidney management Options and advance care Planning Education (COPE) into routine CKD care: a protocol for a pilot randomised controlled trial

et al. 2021

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IntroductionPredialysis education for patients with advanced chronic kidney disease (CKD) typically focuses narrowly on haemodialysis and peritoneal dialysis as future treatment options. However, patients who are older or seriously ill may not want to pursue dialysis and/or may not benefit from this treatment. Conservative kidney management, a reasonable alternative treatment, and advance care planning (ACP) are often left out of patient education and shared decision-making. In this study, we will pilot an educational intervention (Conservative Kidney Management Options and Advance Care Planning Education—COPE) to improve knowledge of conservative kidney management and ACP among patients with advanced CKD who are older and/or have poor functional status.Methods and analysisThis is a single-centre pilot randomised controlled trial at an academic centre in Philadelphia, PA. Eligible patients will have: age ≥70 years and/or poor functional status (as defined by Karnofsky Performance Index Score <70), advanced CKD (estimated glomerular filtration rate<20 mL/min/1.73 m2), prefer to speak English during clinical encounters and self-report as black or white race. Enrolled patients will be randomised 1:1, with stratification by race, to receive enhanced usual care or usual care and in-person education about conservative kidney management and ACP (COPE). The primary outcome is change in knowledge of CKM and ACP. We will also explore intervention feasibility and acceptability, change in communication of preferences and differences in the intervention’s effects on knowledge and communication of preferences by race. We will assess outcomes at baseline, immediately post-education and at 2 and 12 weeks.Ethics and disseminationThis protocol has been approved by the Institutional Review Board at the University of Pennsylvania. We will obtain written informed consent from all participants. The results from this work will be presented at academic conferences and disseminated through peer-reviewed journals.Trial registration numberThis trial is registered at ClinicalTrials.gov under NCT03229811.

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Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study

Cited by 15 publications

References 35 publications

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives

Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives

An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care

Integrating Conservative kidney management Options and advance care Planning Education (COPE) into routine CKD care: a protocol for a pilot randomised controlled trial

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