PT  - JOURNAL ARTICLE
AU  - Maoliosa Donald
AU  - Heather Beanlands
AU  - Sharon Straus
AU  - Paul Ronksley
AU  - Helen Tam-Tham
AU  - Juli Finlay
AU  - Michelle Smekal
AU  - Meghan J. Elliott
AU  - Janine Farragher
AU  - Gwen Herrington
AU  - Lori Harwood
AU  - Chantel A. Large
AU  - Claire L. Large
AU  - Blair Waldvogel
AU  - Maria L. Delgado
AU  - Dwight Sparkes
AU  - Allison Tong
AU  - Allan Grill
AU  - Marta Novak
AU  - Matthew T. James
AU  - K. Scott Brimble
AU  - Susan Samuel
AU  - Karen Tu
AU  - Brenda R. Hemmelgarn
TI  - Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop
AID  - 10.9778/cmajo.20190081
DP  - 2019 Oct 01
TA  - CMAJ Open
PG  - E713--E720
VI  - 7
IP  - 4
4099  - http://www.cmajopen.ca/content/7/4/E713.short
4100  - http://www.cmajopen.ca/content/7/4/E713.full
SO  - CMAJ2019 Oct 01; 7
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.