A Mixed Method Investigation to Determine Priorities for Improving Information, Interaction, and Individualization of Care Among Individuals on In-center Hemodialysis: The Triple I Study

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Background: Clinical settings often make it challenging for patients with kidney failure to receive individualized hemodialysis (HD) care. Individualization refers to care that reflects an individual’s specific circumstances, values, and preferences. Objective: This study aimed to describe patient, caregiver, and health care professional perspectives regarding challenges and solutions to individualization of care in people receiving in-center HD. Design: In this multicentre qualitative study, we conducted focus groups with individuals receiving in-center HD and their caregivers and semi-structured interviews with health care providers from May 2017 to August 2018. Setting: Hemodialysis programs in 5 cities: Calgary, Edmonton, Winnipeg, Ottawa, and Halifax. Participants: Individuals receiving in-center HD for more than 6 months, aged 18 years or older, and able to communicate in English were eligible to participate, as well as their caregivers. Health care providers with HD experience were recruited using a purposive approach and snowball sampling. Methods: Two sequential methods of qualitative data collection were undertaken: (1) focus groups and interviews with HD patients and caregivers, which informed (2) individual interviews with health care providers. A qualitative descriptive methodology guided focus groups and interviews. Data from all focus groups and interviews were analyzed using conventional content analysis. Results: Among 82 patients/caregivers and 31 health care providers, we identified 4 main themes: session set-up, transportation and parking, socioeconomic and emotional well-being, and HD treatment location and scheduling. Particular challenges faced were as follows: (1) session set-up: lack of preferred supplies, machine and HD access set-up, call buttons, bed/chair discomfort, needling options, privacy in the unit, and self-care; (2) transportation and parking: lack of reliable/punctual service, and high costs; (3) socioeconomic and emotional well-being: employment aid, finances, nutrition, lack of support programs, and individualization of treatment goals; and (4) HD treatment location and scheduling: patient displacement from their usual spot, short notice of changes to dialysis time and location, lack of flexibility, and shortages of HD spots. Limitations: Uncertain applicability to non-English speaking individuals, those receiving HD outside large urban centers, and those residing outside of Canada. Conclusions: Participants identified challenges to individualization of in-center HD care, primarily regarding patient comfort and safety during HD sessions, affordable and reliable transportation to and from HD sessions, increased financial burden as a result of changes in functional and employment status with HD, individualization of treatment goals, and flexibility in treatment schedule and self-care. These findings will inform future studies aimed at improving patient-centered HD care.

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Patient, Caregiver, and Provider Perspectives on Challenges and Solutions to Individualization of Care in Hemodialysis: A Qualitative Study

Sass

Finlay

Rossum

et al. 2020

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“… 9 The Can-SOLVE CKD Triple I project is a mixed-methods study in which researchers, clinicians, and patient partners work collaboratively in multiple sites across Canada to advance the quality of care and health outcomes for individuals receiving in-center hemodialysis. 10 The 3 “I’s” in the study title refer to the original framework for the Triple I study that aims to improve in-center hemodialysis care by addressing key challenges to information provided to patients about their health and health care, interactions with health providers, and individualization of care in in-center hemodialysis. 10 , 11 The objective of this article is to identify challenges and potential solutions to accessing and delivering information in in-center hemodialysis as identified by patients, caregivers, and health providers.…”

Section: Introductionmentioning

confidence: 99%

Patient, Caregiver, and Provider Perspectives on Improving Information Delivery in Hemodialysis: A Qualitative Study

Silva

Talson

Finlay

et al. 2021

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Background: Patients with kidney failure are exposed to a surfeit of new information about their disease and treatment, often resulting in ineffective communication between patients and providers. Improving the amount, timing, and individualization of information received has been identified as a priority in in-center hemodialysis care. Objective: To describe and explicate patient, caregiver, and health care provider perspectives regarding challenges and solutions to information transfer in clinical hemodialysis care. Design: In this multicenter qualitative study, we gathered perspectives of patients, their caregivers, and health care providers conducted through focus groups and interviews. Setting: Five Canadian hemodialysis centers: Calgary, Edmonton, Winnipeg, Ottawa, and Halifax. Participants: English-speaking adults receiving in-center hemodialysis for longer than 6 months, their caregivers, and hemodialysis health care providers. Methods: Between May 24, 2017, and August 16, 2018, data collected through focus groups and interviews with hemodialysis patients and their caregivers subsequently informed semi-structured interviews with health care providers. For this secondary analysis, data were analyzed through an inductive thematic analysis using grounded theory, to examine the data more deeply for overarching themes. Results: Among 82 patients/caregivers and 31 healthcare providers, 6 main themes emerged. Themes identified from patients/caregivers were (1) overwhelmed at initiation of hemodialysis care, (2) need for peer support, and (3) improving comprehension of hemodialysis processes. Themes identified from providers were (1) time constraints with patients, (2) relevance of information provided, and (3) technological innovations to improve patient engagement. Limitations: Findings were limited to Canadian context, English speakers, and individuals receiving hemodialysis in urban centers. Conclusions: Participants identified challenges and potential solutions to improve the amount, timing, and individualization of information provided regarding in-center hemodialysis care, which included peer support, technological innovations, and improved knowledge translation activities. Findings may inform the development of interventions and strategies aimed at improving information delivery to facilitate patient-centered hemodialysis care.

“…Areas of particular concern include the amount of information nephrologists share with patients and how this information is delivered. 4 , 5 In Canada and the United States, it is common for interactions between the patient and his or her nephrologist to occur during HD treatment. This prevailing model of HD care delivery (“walk rounds”) 6 is a potential barrier to quality patient-physician interactions for several reasons.…”

Section: Introductionmentioning

confidence: 99%

“…The rationale for this study was directly informed by patient research priorities from the Can-SOLVE CKD Network-supported Triple I project, a multi-center initiative aimed at re-shaping HD care. 5 Specifically, evaluating innovative methods to improve the delivery of individualized health information was a key research priority theme.…”

Section: Introductionmentioning

confidence: 99%

Voicing Individual Concerns for Engagement in Hemodialysis (VOICE-HD): A Mixed Method, Randomized Pilot Trial of Digital Health in Dialysis Care Delivery

Thompson

Schick‐Makaroff

Bello

et al. 2021

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Background: People receiving in-center hemodialysis (HD) have prioritized the need for more individualized health information and better communication with nephrologists. The most common setting for patient-nephrologist interactions is during the HD treatment, which is a time pressured setting that lacks privacy. Objective: To facilitate effective communication in the hemodialysis (HD) unit, we evaluated the usability of a web application (web app) from both the patient and physician perspective. The main aim of the web app was to support patients in prioritizing their dialysis concerns outside of the clinical HD encounter. Design: Mixed method, parallel arm, multi-site, pilot randomized controlled trial. Setting: Two outpatient Canadian HD centers. Participants: Adult patients receiving in-center HD and their attending nephrologists. Methods: Patients were randomized to either a web application or an active control (paper form) for logging concerns to be addressed at weekly encounters with the nephrologist over 8 weeks. Topics included: HD treatment, symptoms, modality, and medications. The primary outcome was usability, defined as effectiveness (engagement with the tool, frequency of submitted concerns, whether the concern was satisfactorily addressed) and satisfaction with the tool using a priori thresholds and explored in interviews with patients and nephrologists. Results: 77 patients (30 women, median age 61, interquartile range [53,67], median 2 years [1,4] on dialysis) and 19 nephrologists (4 women, median age 46 [36,65]) were enrolled. Patient use of a digital device at baseline was low (20%). Engagement with the tool was 70% (web app) and 100% (paper) with a lower proportion of patients in the web app group submitting at least one concern over 8 weeks compared to the paper form group: 56.7% vs 87.9%. Weekly concerns were satisfactorily addressed in both groups and ≥70% of patients would continue to use the tools. For patients, both tools promoted preparation and participation in the encounter; however, only the web app facilitated greater privacy in relaying concerns. For most nephrologists, the tools were disruptive to their workflow and were perceived as unnecessary given existing processes and familiarity with patients. For future versions of the app, patients suggested more features to facilitate self-management and nephrologists suggested integration with health databases and multidisciplinary teams. Limitations: Tertiary setting may limit generalizability. Conclusions: Both tools promoted fundamental components of self-management; however, patients in the paper form group submitted concerns more often and this tool was easier to remember to use. Although modifications would likely enhance web app usability, successful future adoption is limited by physician acceptance. Trial registration ClinicalTrials.gov NCT03605875