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. 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. Copyright 2019, Joule Inc. or its licensors.
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. Copyright 2019, Joule Inc. or its licensors.
Authors: Liina Mansukoski; Alexandra Albert; Yassaman Vafai; Chris Cartwright; Aamnah Rahman; Jessica Sheringham; Bridget Lockyer; Tiffany C Yang; Philip Garnett; Maria Bryant Journal: Int J Environ Res Public Health Date: 2022-06-28 Impact factor: 4.614
Authors: Andrew James Williams; Tamaryn Menneer; Mansi Sidana; Tim Walker; Kath Maguire; Markus Mueller; Cheryl Paterson; Michael Leyshon; Catherine Leyshon; Emma Seymour; Zoë Howard; Emma Bland; Karyn Morrissey; Timothy J Taylor Journal: JMIR Public Health Surveill Date: 2021-02-16
Authors: Maoliosa Donald; Heather Beanlands; Sharon Straus; Michelle Smekal; Sarah Gil; Meghan J Elliott; Lori Harwood; Blair Waldvogel; Maria Delgado; Dwight Sparkes; Allison Tong; Allan Grill; Marta Novak; Matthew T James; K Scott Brimble; Karen Tu; Brenda R Hemmelgarn Journal: CMAJ Open Date: 2022-08-16
Authors: Glen James; Elisabeth Nyman; Marcy Fitz-Randolph; Anna Niklasson; Katarina Hedman; Jonatan Hedberg; Eric T Wittbrodt; Jennie Medin; Carol Moreno Quinn; Alaster M Allum; Cathy Emmas Journal: J Med Internet Res Date: 2020-07-15 Impact factor: 5.428