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.

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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.

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. Electronic supplementary material The online version of this article (10.1186/s12882-019-1269-2) contains supplementary material, which is available to authorized users.

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.

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.

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.

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.