RT Journal Article
SR Electronic
T1 Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop
JF CMAJ Open
JO CMAJ
FD Canadian Medical Association
SP E713
OP E720
DO 10.9778/cmajo.20190081
VO 7
IS 4
A1 Maoliosa Donald
A1 Heather Beanlands
A1 Sharon Straus
A1 Paul Ronksley
A1 Helen Tam-Tham
A1 Juli Finlay
A1 Michelle Smekal
A1 Meghan J. Elliott
A1 Janine Farragher
A1 Gwen Herrington
A1 Lori Harwood
A1 Chantel A. Large
A1 Claire L. Large
A1 Blair Waldvogel
A1 Maria L. Delgado
A1 Dwight Sparkes
A1 Allison Tong
A1 Allan Grill
A1 Marta Novak
A1 Matthew T. James
A1 K. Scott Brimble
A1 Susan Samuel
A1 Karen Tu
A1 Brenda R. Hemmelgarn
YR 2019
UL http://www.cmajopen.ca/content/7/4/E713.abstract
AB 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.