Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop.
Journal
CMAJ open
ISSN: 2291-0026
Titre abrégé: CMAJ Open
Pays: Canada
ID NLM: 101620603
Informations de publication
Date de publication:
Historique:
entrez:
12
12
2019
pubmed:
12
12
2019
medline:
12
12
2019
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
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
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
CONCLUSIONS
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.
Identifiants
pubmed: 31822502
pii: 7/4/E713
doi: 10.9778/cmajo.20190081
pmc: PMC6905858
doi:
Types de publication
Journal Article
Langues
eng
Pagination
E713-E720Informations de copyright
Copyright 2019, Joule Inc. or its licensors.
Déclaration de conflit d'intérêts
Competing interests: Matthew James reports grants from Amgen Canada, outside the submitted work. No other competing interests were declared.
Références
BMJ Open. 2018 Mar 22;8(3):e019814
pubmed: 29567848
Am J Kidney Dis. 2016 Sep;68(3):353-70
pubmed: 27020884
Ann Behav Med. 2003 Aug;26(1):1-7
pubmed: 12867348
J Ren Care. 2016 Mar;42(1):7-14
pubmed: 26404772
Lancet. 2018 Nov 10;392(10159):1789-1858
pubmed: 30496104
BMJ. 2017 Aug 2;358:j3453
pubmed: 28768629
BMC Nephrol. 2018 Oct 20;19(1):279
pubmed: 30342487
Can J Kidney Health Dis. 2018 May 22;5:2054358118775098
pubmed: 29844919
J Biomed Inform. 2015 Feb;53:100-12
pubmed: 25239261
Can J Kidney Health Dis. 2018 Jan 17;5:2054358117749530
pubmed: 29372064
Nephrol Dial Transplant. 2017 May 1;32(5):847-854
pubmed: 27190349
Am J Kidney Dis. 2019 Oct;74(4):474-482
pubmed: 30952486
Can Fam Physician. 2014 Mar;60(3):294-6
pubmed: 24627387
Can J Kidney Health Dis. 2019 May 22;6:2054358119848126
pubmed: 31205731
Int J Med Inform. 2013 Nov;82(11):e251-68
pubmed: 21481635