Data for: Building Evidence for a Concurrent Hospice and Dialysis Program for Terminal Patients with End-Stage Renal Disease (ESRD)

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Project Overview In this study, we aimed to understand patient, family caregiver, clinician, and administrator perspectives on barriers and facilitators to implementing concurrent hospice-dialysis in diverse settings. To this end, we conducted formative interviews with patients, family caregivers, clinicians, and administrators to assess the feasibility of a concurrent hospice-dialysis program in diverse dialysis (e.g., non-/for-profit) and hospice (e.g., urban/rural) settings. Data Collection Overview Separate interview guides were developed for each group based on the Consolidated Framework for Implementation Research (CFIR), which considers both the context of specific settings in which a program is being implemented, and the larger systemic context. The interview guide included four overarching domains: (1) end-of-life care and preparatory needs, (2) gaps and preferences in care delivery, (3) infrastructure, including education, necessary to support implementation of end-of-life care, and (4) perceptions regarding hospice-dialysis and implications of receiving such care. These interview guides were pilot-tested with two additional individuals, revising the guides as necessary. We recruited by email and conducted interviews with patients with late-stage (Stage 4-5) chronic kidney disease (CKD), family caregivers, bereaved family caregivers, hospice and nephrology clinicians (physicians, advanced practice providers, nurses, social workers) and administrators, and policy experts (national hospice policy organizations, health plans). Patients and family caregivers were from one health system; the other participants were recruited nationally. All participants spoke English. Between October 2020 and September 2021, two experienced qualitative interviewers (Dr. Ernecoff and another trained interviewer) conducted 39 interviews, each lasting 20-30 minutes. Dr. Ernecoff conducted two mock interviews to train the second interviewer prior to participant enrollment. The team reviewed the audio files of this individual’s first three interviews, noting and discussing differences in technique. There were weekly debriefs to discuss progress and resolve any issues. Interviews were conducted by phone or in person to minimize participant inconvenience, and were audio recorded. Audio files were transcribed verbatim. Data Analysis Transcriptions of the audio recordings were coded using NVivo qualitative research software. Using codes and themes identified during analysis, we compared qualitative data within and across participants. Qualitative data were analyzed using constant comparative methods and existing theory to develop a hybrid inductive-deductive framework. Data collection continued until we reached thematic saturation. The qualitative codebook parallels the interview guide and was iteratively refined. Two trained qualitative coders independently coded documents and held consensus meetings to discuss any discrepancies. Inter-rater reliability was assessed using Cohen’s kappa. During training, coders reviewed documents and met iteratively until they reached a kappa statistic ≥0.80 (i.e., strong agreement). Then, Dr. Ernecoff coded all remaining transcripts; the second coder and study team were available for assistance with difficult-to-code data. We used constant comparison to prevent drift and assure relevance of codes over time. Shared Data Overview The shared data consist of all 39 de-identified interview transcripts and a number of documentation files contextualizing the process of data collection and analysis, namely the three consent templates (used for clinicians/administrators, caregivers and patients, respectively), the four interview guides (for the same participant groups, plus another one for program administrators), and the final version of the codebook developed. The data file names reflect the type of participant of each by letter (“A” for administrators, “P” for patients and caregivers, “C” for clinicians).