Identifying Needs for Self-management Interventions for Adults With CKD and Their Caregivers: A Qualitative Study.

RATIONALE & OBJECTIVE: Fostering the ability of patients to self-manage their chronic kidney disease (CKD), with support from caregivers and providers, may slow disease progression and improve health outcomes. However, little is known about such patients' needs for self-management interventions. We aimed to identify and describe the needs of adults with CKD and informal caregivers for CKD self-management support. STUDY DESIGN: Descriptive qualitative study using semi-structured interviews and focus groups. SETTING & PARTICIPANTS: 6 focus groups (37 participants) and 11 telephone interviews with adults with CKD (stages 1-5, not on renal replacement therapy) and informal caregivers from across Canada. ANALYTIC APPROACH: Thematic analysis. RESULTS: 3 major themes were identified: (1) empowerment through knowledge (awareness and understanding of CKD, diet challenges, medication and alternative treatments, attuning to the body, financial implications, mental and physical health consequences, travel and transportation restrictions, and maintaining work and education), (2) activation through information sharing (access, meaningful and relevant, timing, and amount), and (3) tangible supports for the health journey (family, community, and professionals). LIMITATIONS: Participants were primarily white, educated, married, and English speaking, which limits generalizability. CONCLUSIONS: There are opportunities to enhance CKD self-management support by addressing knowledge pertinent to living well with CKD and priority areas for sharing information and providing tangible support. Future efforts may consider the development of innovative CKD self-management support interventions based on the diverse patient and caregiver needs identified in this study.

Patient and provider experience and perspectives of a risk-based approach to multidisciplinary chronic kidney disease care: a mixed methods study.

BACKGROUND: The Kidney Failure Risk Equation (KFRE) predicts risk of progression to kidney failure and is used to guide clinical decisions for patients with chronic kidney disease (CKD). METHODS: The KFRE was implemented to guide access to multidisciplinary care for CKD patients in Alberta, Canada, based on their 2-year risk of kidney failure. We used a mixed methods approach to investigate patients' and providers' perspectives and experiences 1 year following KFRE implementation. We conducted post-implementation interviews with multidisciplinary clinic providers and with low-risk patients who transitioned from multidisciplinary to general nephrology care. We also administered pre- and post-implementation patient care experience surveys, targeting both low-risk patients discharged to general nephrology and high-risk patients who remained in the multidisciplinary clinic, and provider job satisfaction surveys. RESULTS: Twenty-seven interviews were conducted (9 patients, 1 family member, 17 providers). Five categories were identified among patients and providers: targeted care; access to resources outside the multidisciplinary clinics; self-efficacy; patient reassurance and reduced stress; and transition process for low-risk patients Two additional categories were identified among providers only: anticipated concerns and job satisfaction. Patients and providers reported that the risk-based approach allowed the clinic to target care to those most likely to experience kidney failure and most likely to benefit from multidisciplinary care. While some participants indicated the risk-based model enhanced the sustainability of the clinics, others expressed concern that care for low-risk patients discharged from multidisciplinary care, or those now considered ineligible, may be inadequate. Overall, 413 patients completed the care experience survey and 73 providers completed the workplace satisfaction survey. The majority of patients were satisfied with their care in both periods with no overall differences. When considering the responses "Always" and "Often" together versus not, there were statistically significant improvements in domains of access to care, caring staff, and safety of care. There were no differences in healthcare providers' job satisfaction following KFRE implementation. CONCLUSIONS: Patients and healthcare providers reported that the risk-based approach improved the focus of the multidisciplinary CKD clinics by targeting patients at highest risk, with survey results suggesting no difference in patient care experience or healthcare provider job satisfaction.

"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.

Preferences of Patients With Chronic Kidney Disease for Invasive Versus Conservative Treatment of Acute Coronary Syndrome: A Discrete Choice Experiment.

Background Patients with chronic kidney disease (CKD) can experience acute coronary syndromes (ACS) with high morbidity and mortality. Early invasive management of ACS is recommended for most high-risk patients; however, choosing between an early invasive versus conservative management approach may be influenced by the unique risk of kidney failure for patients with CKD. Methods and Results This discrete choice experiment measured the preferences of patients with CKD for future cardiovascular events versus acute kidney injury and kidney failure following invasive heart procedures for ACS. The discrete choice experiment, consisting of 8 choice tasks, was administered to adult patients attending 2 CKD clinics in Calgary, Alberta. The part-worth utilities of each attribute were determined using multinomial logit models, and preference heterogeneity was explored using latent class analysis. A total of 140 patients completed the discrete choice experiment. The mean age of patients was 64 years, 52% were male, and mean estimated glomerular filtration rate was 37 mL/min per 1.73 m2. Across the range of levels, risk of mortality was the most important attribute, followed by risk of end-stage kidney disease and risk of recurrent myocardial infarction. Latent class analysis identified 2 distinct preference groups. The largest group included 115 (83%) patients, who placed the greatest value on treatment benefits and expressed the strongest preference for reducing mortality. A second group of 25 (17%) patients was identified who were procedure averse and had a strong preference toward conservative management of ACS and avoiding acute kidney injury requiring dialysis. Conclusions The preferences of most patients with CKD for management of ACS were most influenced by lowering mortality. However, a distinct subgroup of patients was strongly averse to invasive management. This highlights the importance of clarifying patient preferences to ensure treatment decisions are aligned with patient values.

Hands-free communication technology: a benefit for nursing?

The introduction of mobile communication devices (MCDs) has dramatically altered how nurses communicate. It is critical to assess whether these technologies contribute to stress and complicate the work of the nurse or if the devices are perceived as assisting in the provision of efficient and higher-quality patient care. The authors discuss a study that assessed the perceptions of nurses on a medical unit after MCDs were implemented.

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

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.

CONTEXTE: Les patients atteints d'insuffisance rénale reçoivent beaucoup de nouvelles informations sur leur maladie et leurs traitements, ce qui engendre de fréquents problèmes de communication avec leurs fournisseurs de soins. Parmi les priorités des soins d'hémodialyse en centre hospitalier, on compte notamment des améliorations quant au volume et à la personnalisation des informations reçues, de même qu'en regard du moment de leur transmission. OBJECTIFS: Présenter le point de vue des patients, de leurs aidants et des fournisseurs de soins sur les enjeux liés au transfert de l'information entourant les soins cliniques d'hémodialyse, et sur de possibles solutions pour y remédier. TYPE D'ÉTUDE: Étude qualitative multicentrique. Des entrevues et des groupes de discussion ont permis de recueillir les points de vue des patients, de leurs aidants et des fournisseurs de soins. CADRE: Cinq centres canadiens d'hémodialyse: Calgary, Edmonton, Winnipeg, Ottawa et Halifax. PARTICIPANTS: Des adultes anglophones recevant des traitements d'hémodialyse en centre hospitalier depuis au moins six mois, leurs aidants et les fournisseurs de soins des centres d'hémodialyse participants. MÉTHODOLOGIE: Entre le 24 mai 2017 et le 16 août 2018, des entrevues et groupes de discussion impliquant des patients et leurs aidants ont permis de recueillir des données qui ont ensuite informé des entrevues semi-structurées avec les fournisseurs de soins. Une méthode d'analyse thématique inductive reposant sur les faits a été employée pour procéder à une analyse secondaire des données afin de les examiner plus en profondeur et d'en tirer des thèmes généraux. RÉSULTATS: Les entretiens et groupes de discussion, qui ont impliqué 82 patients/aidants et 31 fournisseurs de soins, ont permis de dégager six thèmes principaux. Les thèmes dégagés par les patients/aidants étaient les suivants: (i) le sentiment d'être submergé au début des soins d'hémodialyse; (ii) le besoin de soutien des pairs; et (iii) le besoin de mieux comprendre les processus d'hémodialyse. Les fournisseurs de soins ont quant à eux souligné (i) des contraintes de temps avec les patients; (ii) la pertinence de l'information fournie; et (iii) les innovations technologiques pouvant améliorer l'engagement des patients. LIMITES: Les résultats se limitent au contexte canadien, aux locuteurs anglophones et aux personnes recevant des traitements d'hémodialyse en centre urbain. CONCLUSION: Les participants ont exposé des enjeux liés à la transmission d'informations sur les soins d'hémodialyse en centre hospitalier; notamment en ce qui concerne la quantité d'informations reçues, la personnalisation de celles-ci et le moment opportun pour les transmettre. Ils ont également énoncé de possibles solutions à ces enjeux, notamment des améliorations en matière de soutien des pairs, d'innovations technologiques et d'activités d'application des connaissances. Ces résultats pourraient guider l'élaboration de stratégies et d'interventions visant à mieux transmettre l'information et à faciliter la prestation de soins d'hémodialyse centrés sur le patient.

Patient and physician perspectives on shared decision-making for coronary procedures in people with chronic kidney disease: a patient-oriented qualitative study.

BACKGROUND: Patients with chronic kidney disease (CKD) and heart disease face challenging treatment decisions. We sought to explore the perceptions of patients and physicians about shared decision-making for coronary procedures for people with CKD, as well as opinions about strategies and tools to improve these decisions. METHODS: We partnered with 4 patients with CKD and 1 caregiver to design and conduct a qualitative descriptive study using semi-structured interviews and content analysis. Patient participants with CKD and either acute coronary syndrome or cardiac catheterization in the preceding year were recruited from a provincial cardiac registry, cardiology wards and clinics in Calgary between March and September 2018. Cardiologists from the region also participated in the study. Data analysis emphasized identifying, organizing and describing themes found within the data. RESULTS: Twenty patients with CKD and 10 cardiologists identified several complexities related to bidirectional information exchange needed for shared decision-making. Themes identified by both patients and physicians included challenges synthesizing best evidence, variable patient knowledge seeking, timeliness in the acute care setting and influence of roles on decision-making. Themes identified by physicians related to processes and tools to help support shared decision-making in this setting included personalization to reflect the variability of risks and heterogeneity of patient preferences as well as allowing for physicians to share their clinical judgment. INTERPRETATION: There are complexities related to bidirectional information exchange between patients with CKD and their physicians for shared decision-making about coronary procedures. Processes and tools to facilitate shared decision-making in this setting require personalization and need to be time sensitive.

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

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.

CONTEXTE: Les environnements cliniques rendent souvent difficile l'individualisation des soins pour les patients recevant des traitements d'hémodialyse (HD). L'individualisation réfère à des pratiques reflétant les préférences, les valeurs et les particularités d'un individu. OBJECTIF: Cette étude visait à connaître le point de vue des patients, des soignants et des professionnels de la santé sur les défis et solutions à l'individualisation des soins pour les patients hémodialysés en centre. TYPE D'ÉTUDE: Une étude qualitative multicentrique menée entre mai 2017 et août 2018 sous la forme (1) de groupes de discussion réunissant des patients hémodialysés en centre et leurs soignants, et (2) d'interviews semi-structurées avec des fournisseurs de soins. CADRE: Les programmes d'hémodialyse de cinq villes: Calgary, Edmonton, Winnipeg, Ottawa et Halifax. PARTICIPANTS: Tous les adultes suivant des traitements d'HD en centre depuis plus de 6 mois et pouvant communiquer en anglais étaient admissibles, ainsi que leurs soignants. Les fournisseurs de soins avec une expérience en hémodialyse ont été recrutés selon une approche intentionnelle et par la méthode de sondage cumulatif. MÉTHODOLOGIE: Deux méthodes séquentielles ont été entreprises pour la collecte de données qualificatives: (1) groupes de discussion et interviews avec des patients hémodialysés et leurs soignants; desquels ont découlé (2) des interviews individuelles avec des fournisseurs de soins.Une méthodologie qualitative et descriptive a guidé ces interviews et discussions de groupe. Une analyse de contenu classique a permis d'analyser les données recueillies. RÉSULTATS: Ces entretiens et groupes de discussion ont impliqué 82 patients/soignants et 31 fournisseurs de soins et ont permis de dégager quatre thèmes principaux: l'organisation des séances, le transport et le stationnement, le bien-être socio-économique et émotionnel, l'emplacement et la planification des traitements d'HD. Les principaux obstacles et/ou solutions dégagés pour chacun étaient les suivants: (1) organisation de la séance: manque de matériel privilégié par le patient, configuration de la machine et de l'accès pour l'HD, boutons d'appel, inconfort du lit/fauteuil, options d'aiguilles, intimité dans l'unité, soins personnels; (2) transport et stationnement: manque de service fiable et ponctuel, coûts élevés; (3) bien-être socio-économique et émotionnel: aide à l'emploi, finances, alimentation, manque de programmes de soutien, individualisation des objectifs de traitement, et (4) emplacement et planification des traitements: déplacement du patient de son unité habituelle, court préavis pour les changements d'heure et de lieu pour la dialyse, manque de flexibilité, pénurie d'unités d'HD. LIMITES: Ces résultats pourraient ne pas s'appliquer aux patients non anglophones, aux patients recevant des traitements d'HD hors des grands centres urbains ou résidant hors du Canada. CONCLUSIONS: Les participants ont indiqué les principaux défis à l'individualisation des soins des patients hémodialysés en centre. Ces défis concernent principalement le confort et la sécurité du patient pendant les séances d'HD, le transport abordable et fiable vers et au retour des séances d'HD, l'alourdissement du fardeau financier en raison des changements de statut fonctionnel et d'emploi, l'individualisation des objectifs de traitement et la flexibilité de la planification des séances d'HD et des soins personnels. Ces résultats guideront la conduite d'études futures visant l'amélioration des soins pour les patients hémodialysés en centre.

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.

BACKGROUND: Current health systems do not effectively address all aspects of chronic care. For better self-management of disease, kidney patients have identified the need for improved health care information, interaction with health care providers, and individualization of care. OBJECTIVE: The Triple I study examined challenges to exchange of information, interaction between patients and health care providers and individualization of care in in-center hemodialysis with the aim of identifying the top 10 challenges that individuals on in-center hemodialysis face in these 3 areas. DESIGN: We employed a sequential mixed methods approach with 3 phases:1. A qualitative study with focus groups and interviews (Apr 2017 to Aug 2018);2. A cross-sectional national ranking survey (Jan 2019 to May 2019);3. A prioritization workshop using a modified James Lind Alliance process (June 2019). SETTING: In-center hemodialysis units in 7 academic centers across Canada: Vancouver, Calgary, Edmonton, Winnipeg, Ottawa, Montreal, and Halifax. PARTICIPANTS: Individuals receiving in-center hemodialysis, their caregivers, and health care providers working in in-center hemodialysis participated in each of the 3 phases. METHODS: In Phase 1, we collected qualitative data through (1) focus groups and interviews with hemodialysis patients and their caregivers and (2) individual interviews with health care providers and decision makers. Participants identified challenges to in-center hemodialysis care and potential solutions to these challenges. In Phase 2, we administered a pan-Canadian cross-sectional ranking survey. The survey asked respondents to prioritize the challenges to in-center hemodialysis care identified in Phase 1 by ranking their top 5 topics/challenges in each of the 3 "I" categories. In Phase 3, we undertook a face-to-face priority setting workshop which followed a modified version of the James Lind Alliance priority setting workshop process. The workshop employed an iterative process incorporating small and large group sessions during which participants identified, ranked, and voted on the top challenges and innovations to hemodialysis care. Four patient partners contributed to study design, implementation, analysis, and interpretation. RESULTS: Across the 5 participating centers, we conducted 8 focus groups and 44 interviews, in which 113 participants identified 45 distinct challenges to in-center hemodialysis care. Subsequently, completion of a national ranking survey (n = 323) of these challenges resulted in a short-list of the top 30 challenges. Finally, using small and large group sessions to develop consensus during the prioritizing workshop, 38 stakeholders used this short-list to identify the top 10 challenges to in-center hemodialysis care. These included individualization of dialysis-related education; improved information in specific topic areas (transplant status, dialysis modalities, dialysis-related complications, and other health risks); more flexibility in hemodialysis scheduling; better communication and continuity of care within the health care team; and increased availability of transportation, financial, and social support programs. LIMITATIONS: Participants were from urban centers and were predominately English-speaking. Survey response rate of 31.5% in Phase 2 may have led to selection bias. We collected limited information on social determinants of health, which could confound our results. CONCLUSION: Overall, the challenges we identified demonstrate that individualized care and information that improves interaction with health care providers is important to patients receiving in-center hemodialysis. In future stages of this project, we will aim to address these challenges by trialing innovative patient-centered solutions. TRIAL REGISTRATION: Not applicable.

CONTEXTE: Les systèmes de santé actuels ne traitent pas efficacement tous les aspects des soins aux malades chroniques. Pour mieux autogérer la maladie, les patients atteints de néphropathies expriment un besoin de personnalisation des soins et d'informations de santé facilitant les interactions avec leurs soignants. OBJECTIF: L'étude Triple I s'est penchée sur l'échange d'information, l'interaction entre les patients et les soignants et la personnalisation des soins en hémodialyse en center. Nous souhaitions cerner les dix principaux défis auxquels font face les patients dans ces trois secteurs. TYPE D'ÉTUDE: Nous avons procédé en trois phases selon une approche séquentielle à méthodes mixtes:1. étude qualitative avec groupes échantillons et entretiens individuels (avril 2017 à août 2018);2. sondage de classement transversal au niveau national (janvier à mai 2019);3. atelier consacré à la définition des priorités utilisant une version modifiée du James Lind Alliance process (juin 2019). CADRE: Les unités d'hémodialyse de sept centres hospitaliers universitaires à travers le Canada (Vancouver, Calgary, Edmonton, Winnipeg, Ottawa, Montréal et Halifax). PARTICIPANTS: Des patients hémodialysés en centre, leurs soignants et des fournisseurs de soins travaillant dans les unités d'hémodialyse ont participé à chacune des trois phases. MÉTHODOLOGIE: Au cours de la phase 1, nous avons recueilli des données qualitatives par l'entremise 1) de groupes échantillons et d'entretiens avec des patients hémodialysés et leurs soignants, et 2) d'entretiens individuels avec des fournisseurs de soins et des décideurs. Les participants ont mis en évidence les défis liés aux soins d'hémodialyse en centre et les possibles solutions à ceux-ci. Pour la phase 2, nous avons procédé à un sondage de classement transversal pancanadien où les répondants devaient classer par ordre de priorité les difficultés recensées au cours de la phase 1. Les répondants devaient classer leurs cinq principaux défis dans chacune des trois catégories établies lors de la phase 1. La phase 3 a consisté en un atelier d'établissement des priorités selon une version modifiée du processus de la James Lind Alliance. Pour cet atelier, nous avons utilisé un processus itératif comportant des séances en petits et grands groupes au cours desquelles les participants ont identifié, classé et voté sur les principaux défis et innovations en matière de soins d'hémodialyse. Quatre patients partenaires ont contribué à la conception de l'étude, à sa mise en œuvre, de même qu'à l'analyse et à l'interprétation des résultats. RÉSULTATS: Dans les cinq sites ayant participé à la phase 1, nous avons mené 8 groupes de discussion et 44 interviews au cours desquels 113 participants ont mentionné 45 défis distincts liés aux soins d'HD en centre. Par la suite (phase 2), la complétion d'un sondage de classement national (n=323) de ces défis a mené à une liste restreinte de 30 difficultés. Puis, lors de l'atelier visant le dégagement d'un consensus (phase 3), 38 intervenants ont utilisé cette courte liste lors de séances en petits et grands groupes pour s'entendre sur les 10 principaux défis des soins d'hémodialyse en centre. Cette courte liste incluait notamment des besoins pour i) une éducation personnalisée sur la dialyse; ii) des informations de meilleure qualité sur certains sujets précis (transplantation, modalités de dialyse, complications liées à la dialyse et autres risques pour la santé); iii) plus de flexibilité dans les horaires de dialyse; iv) une meilleure communication et continuité dans les soins au sein des équipes soignantes; et v) une plus grande disponibilité des programmes de transport, de soutien financier et de soutien social. LIMITES: La majorité des participants provenait de centres urbains et s'exprimait en anglais. Le taux de réponse au sondage de la phase 2 était de 31,5 %, ce qui pourrait avoir entraîné des biais de sélection. Nous avons recueilli peu d'information sur les déterminants sociaux de santé, ce qui pourrait brouiller nos résultats. CONCLUSION: Dans l'ensemble, les enjeux soulevés démontrent que l'individualisation des soins et l'échange d'informations facilitant les interactions avec les fournisseurs de soins sont importants pour les patients hémodialysés en centre. Pour la suite de ce projet, nous tenterons de surmonter ces défis par l'expérimentation de solutions innovantes axées sur les patients.

Understanding Adults With Chronic Kidney Disease and Their Caregivers' Self-Management Experiences: A Qualitative Study Using the Theoretical Domains Framework.

BACKGROUND: Self-management support interventions are widely accepted in chronic kidney disease (CKD) care; however, interventions rarely consider individual behaviors by incorporating a behavioral theoretical framework. The Theoretical Domains Framework (TDF) can be used to facilitate an understanding of patients and their caregivers' behaviors to successfully self-manage CKD. OBJECTIVES: (1) To understand behaviors of patients with CKD and their caregivers and identify potential intervention approaches to support CKD self-management and (2) to explore relationships between the 14 TDF domains and CKD self-management. DESIGN: Qualitative descriptive study using both content and thematic analysis. SETTING: Purposive criterion was used to recruit participants from across Canada. PATIENTS: Canadian patients with CKD and their caregivers. MEASUREMENTS: Focus groups and telephone interviews using a semistructured interview guide. METHODS: We conducted a secondary analysis of qualitative data collected from focus groups and telephone interviews from July 2017 to January 2018. Two research team members coded the transcribed data to the 14 TDF domains using a modified approach of the Framework Method. We linked the common TDF domains to relevant intervention functions from the Behaviour Change Wheel (BCW) to identify potential intervention approaches. We also identified and mapped relationships between the relevant TDF domains to report emerging themes. RESULTS: Six focus groups (37 participants) and 11 telephone interview transcripts were analyzed. Five TDF domains that influenced CKD self-management behavior were identified: environmental context and resources, knowledge, beliefs about capabilities, beliefs about consequences, and social influences. Four BCW intervention functions were identified: education, modeling, persuasion, and environmental restructuring. Four emergent themes, shaped by the populated 14 TDF domains, were identified: What does this mean for me? Help me help myself, How does this make me feel? and Who am I? LIMITATIONS: The TDF was not used to design the interview guide; therefore, there may be underrepresentation of some TDF domains relevant for self-management. CONCLUSION: Our findings highlight 5 TDF domains that can influence CKD self-management behavior and 4 possible intervention approaches to influence behavior change in patients with CKD and their caregivers. Emergent themes highlight participants' interpretation of being diagnosed with CKD, their motivations, feelings, values, and altered identity. This work will inform the codesign of a behavior change intervention to enhance patient self-management of CKD.

CONTEXTE: Les interventions visant à soutenir l'autogestion en santé sont largement acceptées dans le traitement de l'insuffisance rénale chronique (IRC). Cependant, ces interventions tiennent rarement compte des comportements individuels en intégrant un cadre comportemental théorique. Le Theoretical Domains Framework (TDF) pourrait être employé pour faciliter la compréhension des comportements des patients et de leurs fournisseurs de soins en vue d'une autogestion efficace de l'IRC. OBJECTIF: 1. Comprendre les comportements des patients atteints d'IRC, de même que ceux de leurs fournisseurs de soins, et proposer des approches interventionnelles visant à soutenir l'autogestion de l'IRC.2. Explorer la relation entre les 14 domaines du TDF et l'autogestion de l'IRC. TYPE D'ÉTUDE: Une étude qualificative et descriptive utilisant à la fois l'analyse de contenu et l'analyse thématique. CADRE: Un critère fondé sur l'objectif a été utilisé pour recruter des participants partout au Canada. SUJETS: Des Canadiens atteints d'IRC et leurs fournisseurs de soins. MESURES: Des groupes de discussion et des entretiens téléphoniques menés à l'aide d'un guide d'interview semi-structurée. MÉTHODOLOGIE: Nous avons procédé à une analyze secondaire des données qualitatives provenant des groupes de discussion et des entretiens téléphoniques entre juillet 2017 et janvier 2018. Deux chercheurs membres de l'équipe ont codé les données transcrites selon les 14 domaines du TDF à l'aide d'une approche modifiée de The Framework Method. Nous avons relié les domaines courants du TDF aux fonctions d'intervention appropriées du Behaviour Change Wheel (BCW) pour cerner de potentielles approches interventionnelles. Enfin, nous avons établi et cartographié les relations entre les domaines pertinents du TDF pour en dégager les thèmes émergents. RÉSULTATS: L'analyse porte sur six groupes de discussion (37 participants) et 11 entretiens téléphoniques. Il en est ressorti cinq domaines du TDF ayant influencé l'autogestion de l'IRC (les ressources et le contexte environnemental, les connaissances, les croyances relatives aux capacités, les croyances relatives aux conséquences et les influences sociales) et quatre fonctions d'intervention du BCW (l'éducation, le modelage, la persuasion et le réaménagement du milieu). De plus, quatre thèmes émergents, influencés par les 14 domaines du TDF, ont été mis en lumière: Qu'est-ce que cela signifie pour moi? Aidez-moi à m'aider moi-même., Qu'est-ce que cela me fait ressentir? Qui suis-je? LIMITES: Certains domaines du TDF pertinents pour l'autogestion pourraient être sous-représentés puisque le TDF n'a pas été utilisé pour l'élaboration du guide d'interview. CONCLUSION: Nos résultats mettent en lumière cinq domaines du TDF susceptibles d'influencer les comportements en autogestion de l'IRC et quatre approches interventionnelles qui pourraient entraîner des changements de comportement chez les patients atteints d'IRC et leurs fournisseurs de soins. Les thèmes émergents mettent l'accent sur l'interprétation qu'ont les patients du diagnostic de l'IRC, de même que sur leurs motivations, leurs sentiments, leurs valeurs et leur identité modifiée. Ces travaux éclaireront la co-conception d'une intervention facilitant les changements de comportements, en vue d'améliorer l'autogestion de l'IRC par les patients.

Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop.

BACKGROUND: Electronic health (e-health) tools may support patients' self-management of chronic kidney disease. We aimed to identify preferences of patients with chronic kidney disease, caregivers and health care providers regarding content and features for an e-health tool to support chronic kidney disease self-management. METHODS: A patient-oriented research approach was taken, with 6 patient partners (5 patients and 1 caregiver) involved in study design, data collection and review of results. Patients, caregivers and clinicians from across Canada participated in a 1-day consensus workshop in June 2018. Using personas (fictional characters) and a cumulative voting technique, they identified preferences for content for 8 predetermined topics (understanding chronic kidney disease, diet, finances, medication, symptoms, travel, mental and physical health, work/school) and features for an e-health tool. RESULTS: There were 24 participants, including 11 patients and 6 caregivers, from across Canada. The following content suggestions were ranked the highest: basic information about kidneys, chronic kidney disease and disease progression; reliable information on diet requirements for chronic kidney disease and comorbidities, renal-friendly foods; affordability of medication, equipment, food, financial resources and planning; common medications, adverse effects, indications, cost and coverage; symptom types and management; travel limitations, insurance, access to health care, travel checklists; screening and supports to address mental health, cultural sensitivity, adjusting to new normal; and support to help integrate at work/school, restrictions. Preferred features included visuals, the ability to enter and track health information and interact with health care providers, "on-the-go" access, links to resources and access to personal health information. INTERPRETATION: A consensus workshop developed around personas was successful for identifying detailed subject matter for 8 predetermined topic areas, as well as preferred features to consider in the codevelopment of a chronic kidney disease self-management e-health tool. The use of personas could be applied to other applications in patient-oriented research exploring patient preferences and needs in order to improve care and relevant outcomes.

Implementation and Evaluation of a Risk-Based Approach to Guide Chronic Kidney Disease Care: Protocol for a Multiphase Mixed-Methods Study.

BACKGROUND: Risk prediction tools are used in a variety of clinical settings to guide patient care, although their use in chronic kidney disease (CKD) care is limited. OBJECTIVES: To assess the association of a risk-based model of CKD care on patient care, satisfaction, outcomes, and cost. DESIGN: Mixed-methods with a pre-post design. SETTING: We will use mixed-methods and a pre-post design to evaluate use of the Kidney Failure Risk Equation (KFRE) to guide CKD care. The KFRE will be applied to patients currently followed in nephrology multidisciplinary CKD clinics in Alberta, as well as to new patients being considered for multidisciplinary care. PATIENTS: Patients with a 2-year risk of kidney failure ≥10% or estimated glomerular filtration rate (eGFR) ≤15 mL/min/1.73 m2 will be recommended care by a multidisciplinary team coordinated by a nurse clinician and nephrologist, with access to other multidisciplinary resources including dietitians, pharmacists, and social workers as required. MEASUREMENTS/METHODS: Focus groups and interviews will be conducted to qualitatively describe patient and provider perspectives of potential barriers and facilitators to implementation of the risk-based approach to CKD care. Patient and provider surveys will also be used to quantify patient and provider satisfaction before and after the intervention. Finally, administrative data will be used to evaluate the association between the risk-based approach to care and outcomes including health care resource use, frequency of testing, modality choice, and death. CONCLUSIONS: Use of a risk-based model of care has the potential to increase use of optimal treatments such as the use of home dialysis and preemptive kidney transplantation, while reducing costs and poor outcomes related to processes of care such as unnecessary laboratory testing; however, there is also potential for unintended consequences. Our mixed-methods approach will integrate perceptions and needs from key stakeholders (including patients with CKD, their families, and their providers) to guide implementation and ensure appropriate modifications.

CONTEXTE: Les outils de prévision des risques sont employés dans différents contextes cliniques pour orienter les soins prodigués aux patients. Néanmoins, leur usage dans le contexte de l'insuffisance rénale chronique (IRC) demeure limité. OBJECTIF: Évaluer, dans le contexte de l'IRC, l'influence qu'un modèle de soins intégrant la prévision des risques pourrait avoir sur les soins prodigués aux patients, sur leur satisfaction, sur l'évolution de la maladie et sur les coûts de santé. TYPE D'ÉTUDE: Méthode mixte avec évaluation avant et après l'intervention. CADRE DE L'ÉTUDE: À l'aide d'une méthode mixte et d'une évaluation avant et après l'intervention, nous mesurerons l'emploi de l'équation prédictive du risque d'évolution vers l'insuffisance rénale, la Kidney Failure Risk Equation (KFRE), comme guide de soins en IRC. La KFRE sera appliquée aux patients suivis actuellement dans les cliniques multidisciplinaires de néphrologie en Alberta, de même qu'à tous les nouveaux patients qui seront aiguillés vers les soins multidisciplinaires. PATIENTS: Deux groupes de patients seront aiguillés vers une équipe de soins multidisciplinaire coordonnée par une infirmière clinicienne et un néphrologue, soit les patients présentant un risque égal ou supérieur à 10 % de progresser vers l'insuffisance rénale d'ici deux ans, et ceux dont le débit de filtration glomérulaire estimé (DFGe) est de 15 ml/min/1,73 m2 ou moins. Ces patients auront également accès aux autres ressources de la clinique si nécessaire, notamment des nutritionnistes, des pharmaciens et des travailleurs sociaux. MÉTHODOLOGIE: Des groupes de discussion seront formés et des entretiens individuels seront menés pour sonder le point de vue des patients et des fournisseurs de soins sur les possibles obstacles et facilitateurs à l'adoption d'une approche de soins axée sur la prévision du risque. Ces sondages serviront également à évaluer la satisfaction des participants avant et après l'intervention. Les données administratives seront employées pour évaluer l'association entre une approche de soins axée sur la prévision du risque et les issues en lien avec l'intervention, notamment l'utilisation des ressources en santé, la fréquence des tests, le choix de modalité et le décès. CONCLUSION: L'emploi d'un modèle de soins intégrant la prévision du risque a le potentiel d'accroître le recours aux traitements optimaux tels que la dialyse à domicile et la greffe rénale préventive. Il permettra également de réduire les coûts de santé et les issues défavorables comme les tests de laboratoires inutiles. Par contre, ce modèle comporte aussi un risque de conséquences imprévues. Notre approche par méthodes mixtes intègrera les avis et les besoins des personnes impliquées (les patients atteints d'IRC, leurs familles et le personnel soignant) afin d'orienter la mise en œuvre et pour s'assurer d'apporter les modifications appropriées.

Perceived Benefits and Challenges of a Risk-Based Approach to Multidisciplinary Chronic Kidney Disease Care: A Qualitative Descriptive Study.

BACKGROUND: The kidney failure risk equation (KFRE) provides an estimate of risk of progression to kidney failure, and may guide clinical care. OBJECTIVE: We aimed to describe patient, family, and health care provider's perspectives of the perceived benefits and challenges of using a risk-based approach to guide care delivery for patients with advanced chronic kidney disease (CKD), and refine implementation based on their input. METHODS: We used qualitative methodology to explore perceived benefits and challenges of implementing a risk-based approach (using the KFRE) to determine eligibility for multidisciplinary CKD care in Southern Alberta. We obtained perspectives from patients and families through focus groups, as well as input from health care providers through interviews and open-ended responses from an online survey. Twelve patients/family members participated in 2 focus groups, 16 health care providers participated in an interview, and 40 health care providers responded to the survey. RESULTS: Overall, participants felt that a KFRE-based approach had the potential to improve efficiency of the clinics by targeting care to patients at highest risk of kidney failure; however, they also expressed concerns about the impact of loss of services for lower risk individuals. Participants also articulated concerns about a perceived lack of capacity for adequate CKD patient care in the community. Our implementation strategy was modified as a result of participants' feedback. CONCLUSIONS: We identified benefits and challenges to implementation of a risk-based approach to guide care of patients with advanced CKD. Based on these results, our implementation strategy has been modified by removing the category of referral back to primary care alone, and instead having that decision made jointly by nephrologists and patients among low-risk patients.

CONTEXTE: La Kidney Failure Risk equation (KFRE), l'équation qui mesure le risque d'évolution vers la défaillance rénale, est susceptible d'orienter les soins prodigués en néphrologie. OBJECTIFS DE L'ÉTUDE: Nous souhaitions savoir comment les patients, leurs proches et leurs fournisseurs de soins percevaient le recours à une approche de prédiction du risque pour répartir les patients atteints d'insuffisance rénale chronique (IRC) dans le système de soins. Plus précisément, nous nous sommes intéressés aux avantages et aux défis perçus face à une telle approche, et les commentaires recueillis se destinaient à en raffiner la mise en œuvre. MÉTHODOLOGIE: Nous avons utilisé une méthodologie qualitative pour étudier les avantages et les défis perçus de la KFRE comme outil d'évaluation de l'admissibilité de patients sud-albertains atteints d'IRC à la prise en charge par une équipe multidisciplinaire. Les perceptions des patients et de leurs proches ont été recueillies lors de groupes de discussion; les fournisseurs de soins ont quant à eux donné leur avis au moyen d'entrevues et d'un sondage en ligne à questions ouvertes. Au total, douze patients et membres de leurs familles ont participé aux groupes de discussion, 16 fournisseurs des soins ont été interviewés et 40 ont répondu au sondage en ligne. RÉSULTATS: Dans l'ensemble, les participants étaient d'avis que la KFRE avait le potentiel d'améliorer l'efficience des cliniques en néphrologie en canalisant les soins vers les patients à risque élevé de défaillance rénale. Les participants se sont toutefois dits préoccupés par les éventuelles conséquences d'une perte de services pour les patients à moindre risque. Ils appréhendaient également une capacité insuffisante du milieu communautaire à prendre en charge les patients atteints d'IRC. Nous avons modifié notre stratégie de mise en œuvre suivant les commentaires recueillis. CONCLUSION: Cette étude nous a permis de recenser les avantages et les défis perçus face à l'application d'une approche fondée sur la KFRE pour prodiguer des soins aux patients atteints d'IRC à un stade avancé. À la lumière des résultats, la stratégie de mise en œuvre a été modifiée. Nous avons notamment supprimé la catégorie de renvoi automatique aux seuls soins primaires pour faire en sorte que, dans le cas de patients à faible risque, le mode de prise en charge soit conjointement déterminé par le néphrologue et le patient.

Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians.

Increasing evidence suggests that early diagnosis and management of dementia-related symptoms may improve the quality of life for patients and their families. However, individuals may wait from 1-3 years from the onset of symptoms before receiving a diagnosis. The objective of this qualitative study was to explore the perceptions and experiences of problem recognition, and the process of obtaining a diagnosis among individuals with early-stage dementia and their primary carers. From 2006-2009, six Anglo-Canadians with dementia and seven of their carers were recruited from the Alzheimer's Society of Calgary to participate in semi-structured interviews. Using an inductive, thematic approach to the analysis, five major themes were identified: becoming aware of memory problems, attributing meanings to symptoms, initiating help-seeking, acknowledging the severity of cognitive changes and finally obtaining a definitive diagnosis. Individuals with dementia reported noticing memory difficulties earlier than their carers. However, initial symptoms were perceived as ambiguous, and were normalised and attributed to concurrent health problems. The diagnostic process was typically characterised by multiple visits and interactions with health professionals, and a diagnosis was obtained as more severe cognitive deficits emerged. Throughout the diagnostic pathway, carers played dynamic roles. Carers initially served as a source of encouragement to seek help, but they eventually became actively involved over concerns about alternative diagnoses and illness management. A better understanding of the pre-diagnosis period, and the complex interactions between people's beliefs and attributions about symptoms, may elucidate some of the barriers as well as strategies to promote a timelier dementia diagnosis.