scholarly journals Web-based self-management support prototype My Kidneys My Health for adults with chronic kidney disease: Co-design and usability testing (Preprint)

10.2196/22220 ◽  
2020 ◽  
Author(s):  
Maoliosa Donald ◽  
Heather Beanlands ◽  
Sharon Straus ◽  
Michelle Smekal ◽  
Sarah Gil ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Usability Testing ◽  
Self Management ◽  
Management Support ◽  
Web Based

scholarly journals Web-based self-management support prototype My Kidneys My Health for adults with chronic kidney disease: Co-design and usability testing (Preprint)

2020 ◽  
Author(s):  
Maoliosa Donald ◽  
Heather Beanlands ◽  
Sharon Straus ◽  
Michelle Smekal ◽  
Sarah Gil ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Focus Groups ◽  
Usability Testing ◽  
Video Production ◽  
Self Management ◽  
Management Support ◽  
Web Based ◽  
Support Tool ◽  
Patient Reported

BACKGROUND Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those that care for them. Self-management has been shown to slow CKD progression and improve the quality of life for individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed web-based tool for CKD self-management that can be individualized to a patient’s unique situation, priorities, and preferences. We addressed this gap using an Integrated Knowledge Translation method and patient engagement principles. OBJECTIVE The aim of this study was to implement the systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (non-dialysis, non-transplant) and their caregivers to enhance self-management support. METHODS A multi-step, iterative system development cycle was used to co-design and test My Kidneys My Health prototype. The 3-step process included: (1) creating website features and content using two sequential focus groups with patients with CKD and caregivers; (2) heuristic testing using Nielsen’s 10 heuristic principles; (3) usability testing through in-person 60-minute interviews with patients with CKD and a caregiver. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study. RESULTS In step 1, 18 participants (14 patients and 4 caregivers) attended one of the two sequential focus groups. The participants provided specific suggestions for simplifying navigation, as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. Five reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Five participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean System Usability Score of 90 out of 100. CONCLUSIONS My Kidneys My Health prototype is a systematically developed, multi-faceted CKD self-management web-based support tool guided by theory and preferences of patients with CKD and their caregivers. The website is user-friendly and provides features that improve the user experience by tailoring the content and resources to their needs. A feasibility study will provide insight into the acceptability of and engagement with the prototype, and identify preliminary patient reported outcomes (e.g., self-efficacy), as well as potential factors related to implementation. This work is relevant given the shift to virtual care during a pandemic era, providing patients with support when in-person care is restricted. CLINICALTRIAL

scholarly journals The effectiveness of nurse-led self-management support program for people with chronic kidney disease stage 3-4 (CKD-NLSM): Study protocol for a randomized controlled trial

2021 ◽  
Vol 104 (2) ◽  
pp. 003685042110261
Author(s):  
Al Sawad Ayat Ali ◽  
Soo Kun Lim ◽  
Li Yoong Tang ◽  
Aneesa Abdul Rashid ◽  
Boon-How Chew
Keyword(s):  
Kidney Disease ◽  
Controlled Trial ◽  
Self Management ◽  
Control Group ◽  
Management Support ◽  
Disease Knowledge ◽  
Management Intervention ◽  
Randomized Controlled ◽  
Ckd Stage ◽  
Management Behaviors

The complexity of chronic kidney disease (CKD) and its treatments have made self-management behaviors inevitably challenging. However, supplementing education with self-management skills may improve numerous health outcomes in people with nondialysis CKD. This study protocol describes a randomized controlled trial (RCT) aimed to evaluate the effects of a nurse-led self-management support program as an intervention for kidney disease knowledge and CKD self-management behaviors among people with pre-dialysis CKD. In Phase 1, people with CKD stage 3–4 and their family members are involved in co-designing, development and pilot testing of a theory-based self-management intervention. In Phase 2, we perform a cross-cultural adaptation of the Kidney Disease Knowledge Survey, CKD Self-Management and Self-efficacy for Managing Chronic Disease questionnaires. In Phase 3, a parallel RCT will be conducted to evaluate the intervention where 154 participants with CKD stage 3–4 will be randomly assigned to either the intervention ( n = 77) or control group ( n = 77). The intervention group will receive 6-week self-management program from a nurse-coach in addition to standard usual care, while the control group will receive only standard usual care. Outcome measures include kidney disease knowledge, CKD self-management behavior, self-efficacy, quality of life, blood pressure control and adherence to CKD diet as indicated by 24-h urine urea nitrogen, 24-h urine sodium and net endogenous acid production. Data will be collected at baseline and 12-week post-baseline. The between- and within-group intervention effects will be estimated using the Generalized Estimating Equations. The self-management intervention offers strategies to delay CKD progression and to encourage motivation to better self-manage at home. This study integrates self-management education and psychosocial support with culturally relevant scenarios, and evaluates important self-reported and objective outcomes. Clinical Trials Registration: www.ClinicalTrials.gov , identifier: NCT03974646.

scholarly journals Patients’ and healthcare professionals’ beliefs, perceptions and needs towards chronic kidney disease self-management in China: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044059
Author(s):  
Hongxia Shen ◽  
Rianne M J J van der Kleij ◽  
Paul J M van der Boog ◽  
Wenjiao Wang ◽  
Xiaoyue Song ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Illness Perceptions ◽  
Chinese Patients ◽  
Self Management ◽  
Tertiary Referral Hospital ◽  
Chinese Context ◽  
Management Interventions

ObjectivesTo support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.DesignA basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.SettingOne major tertiary referral hospital in Henan province, China.Participants11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.ResultsFour themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.ConclusionsThe limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.

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