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 Donald, Maoliosa
A1 Beanlands, Heather
A1 Straus, Sharon
A1 Ronksley, Paul
A1 Tam-Tham, Helen
A1 Finlay, Juli
A1 Smekal, Michelle
A1 Elliott, Meghan J.
A1 Farragher, Janine
A1 Herrington, Gwen
A1 Harwood, Lori
A1 Large, Chantel A.
A1 Large, Claire L.
A1 Waldvogel, Blair
A1 Delgado, Maria L.
A1 Sparkes, Dwight
A1 Tong, Allison
A1 Grill, Allan
A1 Novak, Marta
A1 James, Matthew T.
A1 Brimble, K. Scott
A1 Samuel, Susan
A1 Tu, Karen
A1 Hemmelgarn, Brenda R.
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.