Patient and Clinician Perspectives on Shared Decision Making in Vascular Access Selection: A Qualitative Study.

RATIONALE & OBJECTIVE: Collaborative approaches to vascular access selection are being increasingly encouraged to elicit patients' preferences and priorities where no unequivocally superior choice exists. We explored how patients, their caregivers, and clinicians integrate principles of shared decision making when engaging in vascular access discussions. STUDY DESIGN: Qualitative description. SETTING & PARTICIPANTS: Semistructured interviews with a purposive sample of patients, their caregivers, and clinicians from outpatient hemodialysis programs in Alberta, Canada. ANALYTICAL APPROACH: We used a thematic analysis approach to inductively code transcripts and generate themes to capture key concepts related to vascular access shared decision making across participant roles. RESULTS: 42 individuals (19 patients, 2 caregivers, 21 clinicians) participated in this study. Participants identified how access-related decisions follow a series of major decisions about kidney replacement therapy and care goals that influence vascular access preferences and choice. Vascular access shared decision making was strengthened through integration of vascular access selection with dialysis-related decisions and timely, tailored, and balanced exchange of information between patients and their care team. Participants described how opportunities to revisit the vascular access decision before and after dialysis initiation helped prepare patients for their access and encouraged ongoing alignment between patients' care priorities and treatment plans. Where shared decision making was undermined, hemodialysis via a catheter ensued as the most readily available vascular access option. LIMITATIONS: Our study was limited to patients and clinicians from hemodialysis care settings and included few caregiver participants. CONCLUSIONS: Findings suggest that earlier, or upstream, decisions about kidney replacement therapies influence how and when vascular access decisions are made. Repeated vascular access discussions that are integrated with other higher-level decisions are needed to promote vascular access shared decision making and preparedness.

Healthcare provider perspectives on integrating peer support in non-dialysis-dependent chronic kidney disease care: a mixed methods study.

BACKGROUND: Peer support complements traditional models of chronic kidney disease (CKD) care through sharing of peer experiences, pragmatic advice, and resources to enhance chronic kidney disease self-management and decision-making. As peer support is variably offered and integrated into multi-disciplinary CKD care, we aimed to characterize healthcare providers' experiences and views on peer support provision for people with non-dialysis-dependent CKD within Canada. METHODS: In this concurrent mixed methods study, we used a self-administered online survey to collect information from multi-disciplinary CKD clinic providers (e.g., nurses, nephrologists, allied health professionals) on peer support awareness, program characteristics and processes, perceived value, and barriers and facilitators to offering peer support in CKD clinics. Results were analyzed descriptively. We undertook semi-structured interviews with a sample of survey respondents to elaborate on perspectives about peer support in CKD care, which we analyzed using inductive, content analysis. RESULTS: We surveyed 113 providers from 49 clinics. Two thirds (66%) were aware of formal peer support programs, of whom 19% offered in-house peer support through their clinic. Peer support awareness differed by role and region, and most referrals were made by social workers. Likert scale responses suggested a high perceived need of peer support for people with CKD. Top cited barriers to offering peer support included lack of peer support access and workload demands, while facilitators included systematic clinic processes for peer support integration and alignment with external programs. Across 18 interviews, we identified themes related to peer support awareness, logistics, and accessibility and highlighted a need for integrated support pathways. CONCLUSIONS: Our findings suggest variability in awareness and availability of peer support among Canadian multi-disciplinary CKD clinics. An understanding of the factors influencing peer support delivery will inform strategies to optimize its uptake for people with advanced CKD.

Outpatient Interventions for Managing Acute Complications of Chronic Diseases: A Scoping Review and Implications for Patients With CKD.

RATIONALE & OBJECTIVE: Patients with chronic kidney disease (CKD) have high rates of emergency department (ED) use and hospitalization. Outpatient care may provide an alternative to ED and inpatient care in this population. We aimed to explore the scope of outpatient interventions used to manage acute complications of chronic diseases and highlight opportunities to adapt and test interventions in the CKD population. STUDY DESIGN: Scoping review of quantitative and qualitative studies. SETTING & POPULATION: Outpatient interventions for adults experiencing acute complications related to 1 of 5 eligible chronic diseases (ie, CKD, chronic respiratory disease, cardiovascular disease, cancer, and diabetes). SELECTION CRITERIA FOR STUDIES: MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, grey literature, and conference abstracts were searched to December 2019. DATA EXTRACTION: Intervention and study characteristics were extracted using standardized tools. ANALYTICAL APPROACH: Quantitative data were summarized descriptively; qualitative data were summarized thematically. Our approach observed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) extension for scoping reviews. RESULTS: 77 studies (25 randomized controlled trials, 29 observational, 12 uncontrolled before-after, 5 quasi-experimental, 4 qualitative, and 2 mixed method) describing 57 unique interventions were included. Of identified intervention types (hospital at home [n = 16], observation unit [n = 9], ED-based specialist service [n = 4], ambulatory program [n = 18], and telemonitoring [n = 10]), most were studied in chronic respiratory and cardiovascular disease populations. None targeted the CKD population. Interventions were delivered in the home, ED, hospital, and ambulatory setting by a variety of health care providers. Cost savings were demonstrated for most interventions, although improvements in other outcome domains were not consistently observed. LIMITATIONS: Heterogeneity of included studies; lack of data for outpatient interventions for acute complications related to CKD. CONCLUSIONS: Several interventions for outpatient management of acute complications of chronic disease were identified. Although none was specific to the CKD population, features could be adapted and tested to address the complex acute-care needs of patients with CKD.

Healthcare Providers and Parents Highlight Challenges of Pediatric Hand Fracture Care.

Pediatric hand fractures are common, and many are referred to hand surgeons despite less than 10% of referrals requiring surgical intervention. We explored healthcare provider and parent perspectives to inform a new care pathway. Methods: We conducted a qualitative descriptive study using virtual focus groups. Emergency physicians, hand therapists, plastic surgeons, and parents of children treated for hand fractures were asked to discuss their experiences with existing care for pediatric hand fractures, and perceptions surrounding the implementation of a new care pathway. Data were analyzed using directed content analysis with an inductive approach. Results: Four focus groups included 24 participants: 18 healthcare providers and six parents. Four themes were identified: educating parents throughout the hand fracture journey, streamlining the referral process for simple hand fractures, identifying the most appropriate care provider for simple hand fractures, and maintaining strong multidisciplinary connections to facilitate care. Participants described gaps in the current care, including a need to better inform parents, and elucidated the motivations behind emergency medicine physicians' existing referral practices. Participants also generally agreed on the need for more efficient management of simple hand fractures that do not require surgical care. Healthcare providers believed the strong preexisting relationship between surgeons and hand therapists would facilitate the changes brought forward by the new care pathway. Conclusion: These findings highlighted shortcomings of existing care for pediatric hand fractures and will inform the co-development and implementation of a new care pathway to enable more efficient management while preserving good patient outcomes.

Priorities for peer support delivery among adults living with chronic kidney disease: a patient-oriented consensus workshop.

BACKGROUND: Peer support can address the informational and emotional needs of people living with chronic kidney disease (CKD) and enable self-management. We aimed to identify preferences and priorities for content, format and processes of peer support delivery for patients with non-dialysis CKD and their loved ones. METHODS: Using a patient-oriented research approach, we conducted a half-day, virtual consensus workshop with stakeholder participants from across Canada, including patients, caregivers, peer mentors and clinicians. Using personas (fictional characters), participants discussed and voted on preferences for delivery of peer support across format, content and process categories. We analyzed transcripts from small- and large-group discussions inductively using content analysis. RESULTS: Twenty-one stakeholders, including 9 patients and 4 caregivers, participated in the workshop. In the voting exercise on format, participants prioritized peer mentor matching, programming for both patients and caregivers, and flexible scheduling. For content, participants prioritized informational and emotional support focus, and for process, they prioritized leveraging kidney care programs and alternative sources (e.g., social media) for promotion and referral. Analysis of workshop transcripts complemented prioritization results and emphasized tailoring of peer support delivery to accommodate the diversity of people living with CKD and their support needs. This concept was elaborated in 3 themes, namely alignment of program features with needs, inclusive peer support options and multiple access points. INTERPRETATION: We identified preferences for peer support delivery for people living with CKD and underscore the importance of tailored, flexible programming in this context. Findings could be used to develop, adapt or study CKD-focused peer support interventions.

Strategies Addressing Barriers to the Implementation of a Pediatric Hand Fracture Care Pathway.

We recently highlighted shortcomings in the care of pediatric hand fractures in our local context. The Calgary Kids' Hand Rule (CKHR) was developed to predict hand fractures that require referral to a hand surgeon. The aims of this study were to identify barriers to a new care pathway for pediatric hand fractures, based on the CKHR and to generate tailored strategies to support its implementation. Methods: We performed a conventional content analysis of transcripts from four focus groups (parents, emergency/urgent care physicians, plastic surgeons, and hand therapists) to identify relevant concepts (facilitators and barriers). These concepts were mapped to two frameworks. Generic strategies to address the barriers were identified, and further discussions with key stakeholders resulted in tailored strategies for implementation. Results: Five facilitators to implementation of a CKHR-based hand fracture care pathway included established rapport between hand therapists and surgeons, potential for more streamlined care, agreement on identifying another care provider, positive perceptions of hand therapist expertise, and opportunity for patient education. Two individual barriers were concern for poor outcomes and trust. Three systemic barriers were awareness and usability, referral process, and cost and resources. Strategies to address these barriers include pilot-testing of the new care pathway, ensuring closed loop communication, multiple knowledge translation activities, integration of CKHR into the clinical information system, coordinating care and development of parent handouts. Conclusion: Mapping barriers to established implementation frameworks has informed tailored implementation strategies, bringing us one step closer to successfully implementing a new pediatric hand fracture pathway.

"You need a team": perspectives on interdisciplinary symptom management using patient-reported outcome measures in hemodialysis care-a qualitative study.

BACKGROUND: Patient-reported outcome measures (PROMs) are standardized instruments used for assessing patients' perspectives on their health status at a point in time, including their health-related quality of life, symptoms, functionality, and physical, mental, and social wellbeing. For people with kidney failure receiving hemodialysis, addressing high symptom burden and complexity relies on care team members integrating their expertise to achieve common management goals. In the context of a program-wide initiative integrating PROMs into routine hemodialysis care, we aimed to explore patients' and clinicians' perspectives on the role of PROMs in supporting interdisciplinary symptom management. METHODS: We employed a qualitative descriptive approach using semi-structured interviews and observations. Eligible participants included adult patients receiving intermittent, outpatient hemodialysis for > 3 months, their informal caregivers, and hemodialysis clinicians (i.e., nurses, nephrologists, and allied health professionals) in Southern Alberta, Canada. Guided by thematic analysis, team members coded transcripts in duplicate and developed themes iteratively through review, refinement, and discussion. RESULTS: Thirty-three clinicians (22 nurses, 6 nephrologists, 5 allied health professionals), 20 patients, and one caregiver participated in this study. Clinicians described using PROMs to coordinate care across provider types using the resources available in their units, whereas patients tended to focus on the perceived impact of this concerted care on symptom trajectory and care experience. We identified 3 overarching themes with subthemes related to the role of PROMs in interdisciplinary symptom management in this setting: (1) Integrating care for interrelated symptoms ("You need a team", conducive setting, role clarity and collaboration); (2) Streamlining information sharing and access (symptom data repository, common language for coordinated care); (3) Reshaping expectations (expectations for follow-up, managing symptom persistence). CONCLUSIONS: We found that use of PROMs in routine hemodialysis care highlighted symptom interrelatedness and complexity and helped to streamline involvement of the interdisciplinary care team. Issues such as role flexibility and resource constraints may influence sustainability of routine PROM use in the outpatient hemodialysis setting.

People with kidney failure receiving hemodialysis are faced with complex symptoms that impact their day-to-day functioning and quality of life. Patient-reported outcome measures (PROMs) are tools used by patients to directly communicate symptoms to their care team and guide symptom-focused care. Little is known about how PROMs could be integrated into the team-based care models of outpatient hemodialysis centres. In this study, we conducted interviews with people receiving hemodialysis and their clinicians about their perspectives on how PROMs could support interdisciplinary symptom management (i.e., integration of expertise to achieve common management goals). Participants described how the interrelatedness of symptoms was well suited to an integrated care approach and how PROMs enhanced communication and access to information across team members. In cases where symptoms persisted despite appropriate treatment, patients and clinicians explained how PROMs served as a tool to set realistic goals and reshape illness perception. Findings from this study suggest that access to resources, role flexibility, and established relationships within hemodialysis centres are important for sustaining PROM use in this setting.

Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study.

Background: Updates to the Kidney Disease Outcomes Quality Initiative Clinical Practice Guideline for Vascular Access emphasize the "right access, in the right patient, at the right time, for the right reasons." Although this implies a collaborative approach, little is known about how patients, their caregivers, and health care providers engage in vascular access (VA) decision-making. Objective: To explore how the perspectives of patients receiving hemodialysis, their caregivers, and hemodialysis care team align and diverge in relation to VA selection. Design: Qualitative descriptive study. Setting: Five outpatient hemodialysis centers in Calgary, Alberta. Participants: Our purposive sample included 19 patients receiving maintenance hemodialysis, 2 caregivers, and 21 health care providers (7 hemodialysis nurses, 6 VA nurses, and 8 nephrologists). Methods: We conducted semi-structured interviews with consenting participants. Using an inductive thematic analysis approach, we coded transcripts in duplicate and characterized themes addressing our research objective. Results: While participants across roles shared some perspectives related to VA decision-making, we identified areas where views diverged. Areas of alignment included (1) optimizing patient preparedness-acknowledging decisional readiness and timing, and (2) value placed on trusting relationships with the kidney care team-respecting decisional autonomy with guidance. Perspectives diverged in the following aspects: (1) differing VA priorities and preferences-patients' emphasis on minimizing disruptions to normalcy contrasted with providers' preferences for fistulas and optimizing biomedical parameters of dialysis; (2) influence of personal and peer experience-patients preferred pragmatic, experiential knowledge, whereas providers emphasized informational credibility; and (3) endpoints for VA review-reassessment of VA decisions was prompted by access dissatisfaction for patients and a medical imperative to achieve a functioning access for health care providers. Limitations: Participation was limited to individuals comfortable communicating in English and from urban, in-center hemodialysis units. Few informal caregivers of people receiving hemodialysis and younger patients participated in this study. Conclusions: Although patients, caregivers, and healthcare providers share perspectives on important aspects of VA decisions, conflicting priorities and preferences may impact the decisional outcome. Findings highlight opportunities to bridge knowledge and readiness gaps and integrate shared decision-making in the VA selection process.

Contexte: Les mises à jour des lignes directrices de pratiques cliniques en matière d'accès vasculaire de la KDOQI (Kidney Disease Outcomes Quality Initiative) insistent sur la création « du bon accès, à la bonne personne, au bon moment et pour les bonnes raisons ¼. Ces recommandations sous-entendent une approche collaborative, mais la façon dont les patients, leurs soignants et les prestataires de soins de santé participent à la prise de décision sur l'accès vasculaire (AV) demeure mal connue. Objectif: Explorer les accords et les divergences dans les points de vue des patients sous hémodialyse, leurs soignants et leur équipe de soins relativement à la sélection de l'AV. Conception: Étude qualitative et descriptive. Cadre: Cinq centres d'hémodialyse ambulatoire à Calgary (Alberta). Sujets: Notre échantillon choisi à dessein était composé de 19 patients sous hémodialyse d'entretien, 2 soignants et 21 prestataires de soins de santé (7 infirmières en hémodialyse, 6 infirmières en AV et 8 néphrologues). Méthodologie: Nous avons mené des entrevues semi-structurées auprès des participants consentants. Une approche d'analyse thématique inductive a été employée pour coder les transcriptions en double et caractériser les thèmes répondant à l'objectif de recherche. Résultats: Certains points de vue sur la prise de décision en matière d'AV étaient partagés par tous les participants, mais nous avons identifié quelques domaines de divergence. Les participants s'entendaient sur : 1) l'optimisation de la préparation des patients ­ reconnaître l'état de préparation et le moment de prendre la décision; et 2) la valeur accordée aux relations de confiance avec l'équipe de soins rénaux ­ respecter l'autonomie décisionnelle après conseils. Les points de vue divergeaient sur : 1) les priorités et préférences à l'égard de l'AV ­ l'accent mis par les patients sur la minimisation des perturbations de la vie courante contrastait avec les préférences des prestataires de soins pour les fistules et l'optimisation des paramètres biomédicaux de la dialyse; 2) l'influence de l'expérience personnelle et des pairs ­ les patients préféraient des connaissances pragmatiques et expérientielles, tandis que les prestataires de soins mettaient l'accent sur la crédibilité de l'information; et 3) les critères d'évaluation de l'AV ­ la réévaluation du choix de l'AV est motivée par l'insatisfaction des patients à l'égard de l'accès et, du côté des prestataires de soins, par l'impératif médical de parvenir à un accès fonctionnel. Limites: Seules les personnes fréquentant une unité d'hémodialyse en centre urbain et à l'aise de communiquer en anglais ont pu participer. Les participants comptaient peu de patients plus jeunes et de soignants informels de personnes sous hémodialyse. Conclusion: Bien que les patients, les soignants et les prestataires de soins de santé s'entendent sur certains aspects importants de la décision concernant l'AV, celle-ci pourrait être influencée par des priorités et préférences contradictoires. Nos résultats mettent en évidence des occasions d'intégrer la prise de décision partagée dans le processus de sélection d'un AV et de combler les lacunes dans les connaissances et la préparation des patients.

'It's the empathy'-defining a role for peer support among people living with chronic kidney disease: a qualitative study.

OBJECTIVES: Persons with advanced chronic kidney disease (CKD) have unique support needs associated with managing a chronic yet often silent condition, complex treatment-related decisions and care transitions. The aim of this study was to explore perspectives on how peer support could address CKD support needs and augment care. DESIGN: This study employed a qualitative descriptive methodology. Data were collected through focus groups (cofacilitated by patient partners) and semistructured interviews. SETTING: Four multidisciplinary CKD clinics across Southern Alberta, Canada. PARTICIPANTS: We purposively sampled among adult patients with advanced, non-dialysis CKD and their caregivers, as well as trained peer mentors from The Kidney Foundation of Canada's Kidney Connect programme. ANALYSIS: Transcripts were coded in duplicate, and themes were generated inductively through a thematic analysis approach. RESULTS: We conducted seven focus groups with a total of 39 patient and caregiver participants. Seven patients and caregivers who were unable to attend a focus group and 13 peer mentors participated in a telephone interview. Although patients and caregivers had limited awareness of peer support, participants acknowledged its central role in affirming their experiences and enabling confidence to live well with kidney disease. We identified four themes related to the anticipated role of peer support in addressing support needs for people with non-dialysis CKD: (1) creating connection; (2) preparing for uncertainty; (3) adapting to new realities; and (4) responsive peer support delivery. Aligning peer support access with patient readiness and existing CKD management supports can promote optimism, community and pragmatic adaptations to challenges. CONCLUSIONS: Patients, caregivers and peer mentors highlighted a unique value in the shared experiences of CKD peers to anticipate and manage disease-related challenges and confidently face a future living with kidney disease.