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

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

doi:10.9778/cmajo.20190081

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

CMAJ Open. 2019 Dec 10;7(4):E713-E720. doi: 10.9778/cmajo.20190081. Print 2019 Oct-Dec.

Authors

Maoliosa Donald¹, Heather Beanlands¹, Sharon Straus¹, Paul Ronksley¹, Helen Tam-Tham¹, Juli Finlay¹, Michelle Smekal¹, Meghan J Elliott¹, Janine Farragher¹, Gwen Herrington¹, Lori Harwood¹, Chantel A Large¹, Claire L Large¹, Blair Waldvogel¹, Maria L Delgado¹, Dwight Sparkes¹, Allison Tong¹, Allan Grill¹, Marta Novak¹, Matthew T James¹, K Scott Brimble¹, Susan Samuel¹, Karen Tu¹, Brenda R Hemmelgarn²

Affiliations

¹ Department of Medicine (Donald, Tam-Tham, Finlay, Smekal, Elliott, Farragher, James, Hemmelgarn), University of Calgary; Interdisciplinary Chronic Disease Collaboration (Donald, Ronksley, Elliott, James, Hemmelgarn), University of Calgary; Department of Community Health Sciences (Donald, Ronksley, Elliott, Hemmelgarn), University of Calgary, Calgary, Alta.; Daphne Cockwell School of Nursing (Beanlands), Ryerson University; Department of Medicine (Straus), University of Toronto; Li Ka Shing Knowledge Institute (Straus), St. Michael's Hospital, Toronto, Ont.; Can-SOLVE CKD patient partner (Herrington, Chantel Large, Claire Large, Waldvogel, Delgado, Sparkes), Vancouver, BC; London Health Sciences Centre (Harwood), London, Ont.; Sydney School of Public Health (Tong), The University of Sydney, Sydney, Australia; Department of Family & Community Medicine (Grill, Tu), University of Toronto; Centre for Mental Health (Novak), University Health Network and Department of Psychiatry, University of Toronto, Toronto, Ont.; Department of Medicine (Brimble), McMaster University, Hamilton, Ont.; Department of Pediatrics (Samuel), University of Calgary, Calgary, Alta.
² Department of Medicine (Donald, Tam-Tham, Finlay, Smekal, Elliott, Farragher, James, Hemmelgarn), University of Calgary; Interdisciplinary Chronic Disease Collaboration (Donald, Ronksley, Elliott, James, Hemmelgarn), University of Calgary; Department of Community Health Sciences (Donald, Ronksley, Elliott, Hemmelgarn), University of Calgary, Calgary, Alta.; Daphne Cockwell School of Nursing (Beanlands), Ryerson University; Department of Medicine (Straus), University of Toronto; Li Ka Shing Knowledge Institute (Straus), St. Michael's Hospital, Toronto, Ont.; Can-SOLVE CKD patient partner (Herrington, Chantel Large, Claire Large, Waldvogel, Delgado, Sparkes), Vancouver, BC; London Health Sciences Centre (Harwood), London, Ont.; Sydney School of Public Health (Tong), The University of Sydney, Sydney, Australia; Department of Family & Community Medicine (Grill, Tu), University of Toronto; Centre for Mental Health (Novak), University Health Network and Department of Psychiatry, University of Toronto, Toronto, Ont.; Department of Medicine (Brimble), McMaster University, Hamilton, Ont.; Department of Pediatrics (Samuel), University of Calgary, Calgary, Alta. Brenda.Hemmelgarn@ahs.ca.

Abstract

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.