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

Donald, Maoliosa; Beanlands, Heather; Straus, Sharon E.; Ronksley, Paul E.; Tam-Tham, Helen; Finlay, Juli; Smekal, Michelle; Elliott, Meghan J.; Farragher, Janine; Herrington, Gwen; Harwood, Lori; Large, Chantel A.; Large, Claire L.; Waldvogel, Blair; Delgado, M. Soto; Sparkes, Dwight; Tong, Allison; Grill, Allan; Novák, Márta; James, Matthew T.; Brimble, K. Scott; Samuel, Susan; Tu, Karen; Hemmelgarn, Brenda R.

doi:10.9778/cmajo.20190081

Cited by 24 publications

(37 citation statements)

References 16 publications

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“…There is limited literature on co-creating personas with users. Donald et al [13] had positive experiences of using personas in a consensus workshop with patients, and suggests using personas in patient-oriented research to explore their needs and preferences. Valaitis et al [14] have involved patients and clinicians in persona-scenario workshops for a primary care intervention.…”

Section: Persona Use In Research and The Industrymentioning

confidence: 99%

Co-creating Persona Scenarios with Diverse Users Enriching Inclusive Design

Fuglerud

Schulz

Janson

et al. 2020

Lecture Notes in Computer Science

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In this article, we will examine personas as methodological approach and review some critiques about how its use may omit or stereotype users with disabilities or even restrict user involvement. We review previous persona creation methods and compare it to our approach where we involve diverse users directly in the personas creation process, to ensure more grounded personas. This approach has recently been refined in a project where we are building a tool aiming to give citizens more control over their health information. We discuss our experiences and offer some experience-based guidelines for using our method.

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Section: Persona Use In Research and The Industrymentioning

confidence: 99%

Co-creating Persona Scenarios with Diverse Users Enriching Inclusive Design

Fuglerud

Schulz

Janson

et al. 2020

Lecture Notes in Computer Science

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“…Thus, the treatment goal lies in improving their quality of life through SM. Chronic disease SM refers to an individual’s ability to handle the various aspects of living with a chronic condition [ 8 , 9 ], as well as “the everyday tasks an individual must undertake to control or reduce the impact of disease on physical health status [ 10 , 11 ].” Risk factors that predispose an individual to CKD can directly contribute to its severity and progression, but are modifiable through early detection and prevention through SM. These risk factors are usually lifestyle factors, primarily determined by the individual’s behavior and often shape the outcome of treatment.…”

Section: Introductionmentioning

confidence: 99%

Patient-Centered Self-Management in Patients with Chronic Kidney Disease: Challenges and Implications

Lin

Hwang

2020

IJERPH

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This review aims to identify attributes of patient-centered self-management (PCSM) in the current literature and explore its implementation in resolving patient obstacles in chronic kidney disease (CKD) treatment and management. A search of relevant articles and literature on PCSM, integrated care, and challenges of CKD management was conducted. Vital attributes of PCSM and current self-management interventions employed to resolve patient obstacles in CKD management were identified from inclusion studies. Findings affirm that PCSM strategies have positive effects on CKD management, but a lack of quality primary study, and long-term evidence presents the need for further development. Future research should focus on the development of a standardized and universal integrated PCSM model and a uniform system of data collection in the clinical setting. The difficulty of CKD management lies in how it is a comorbid and progressive disease. A pure biomedical approach is inadequate. Our review recommends that an integrated PCSM approach with health literacy and information technology intervention, which unifies and integrates patient education, can address the difficulties that are contributing to unsuccessful treatment outcomes. An integrated PCSM model should be implemented systematically and methodologically into future CKD management and health policies.

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“…Therefore, an expanding need exists to build patient-centered pathways for improved CKD management in clinical care [ 3 ]. Patient-focused research can help identify priorities and outcomes that are important to patients and can enable the development of care components that can improve health care practice [ 4 - 6 ]. This information has also driven the development of tools that can promote self-management, which has been shown to slow disease progression, specifically in patients with CKD [ 5 , 7 ].…”

Section: Introductionmentioning

confidence: 99%

“…This information has also driven the development of tools that can promote self-management, which has been shown to slow disease progression, specifically in patients with CKD [ 5 , 7 ]. While qualitative studies have identified specific topics of importance to patients with respect to disease management [ 4 , 5 ], there is still an outstanding need for information directly from patients about their experience of symptoms and outcomes in CKD [ 8 - 10 ].…”

Section: Introductionmentioning

confidence: 99%

“…An additional method for eliciting in-depth information is through patient interviews. Qualitative studies involving semistructured interviews have been scarcely used to understand patients’ experiences of living with CKD and gain their perspective on various aspects of their care, so that any unmet needs can be identified and health care provision improved [ 4 , 10 ]. To date, characteristics, treatments, and self-reported outcomes in patients with CKD who are members of the PLM network have not been evaluated.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

James¹,

Nyman²,

Fitz-Randolph³

et al. 2020

J Med Internet Res

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Background Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. Results The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. Conclusions This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

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

Cited by 24 publications

References 16 publications

Co-creating Persona Scenarios with Diverse Users Enriching Inclusive Design

Co-creating Persona Scenarios with Diverse Users Enriching Inclusive Design

Patient-Centered Self-Management in Patients with Chronic Kidney Disease: Challenges and Implications

Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

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