Accepted for/Published in: JMIR Human Factors
Date Submitted: Apr 12, 2022
Open Peer Review Period: Apr 12, 2022 - Jun 7, 2022
Date Accepted: Oct 6, 2022
(closed for review but you can still tweet)
Digital Outpatient Specialist Healthcare Services for Type 1 Diabetes: adapting a PRO measure to clinical use based on user-involvement
ABSTRACT
Background:
Patients with type 1 diabetes are encouraged to be actively involved in self-management activities. The use of patient reported outcome measures (PROM) and digital solutions can support these activities, allowing patients to identify their needs and whether they want or need contact with healthcare personnel.
Objective:
We present the process of identifying and adapting a digital PROM for use in clinical diabetes practice and describe the preferred items of the adapted PROM as reported by patients and diabetes specialist nurses.
Methods:
With the involvement of patients, diabetes specialist nurses, stakeholders, and researchers, we hosted a series of workshops and two dialogue conferences. Scoping searches to identify relevant PROMs formed the foundation for the process. One in-person dialogue conference was held with diabetes specialist nurses as participants, and a digital dialogue conference was held with patients with type 1 diabetes as participants. One diabetes-specific PROM was translated and adapted to our digital solution. Notes and summaries from the dialogue conferences were imported into NVivo and thematically analyzed as a single combined dataset.
Results:
The thematic analysis of the two dialogue conferences aimed to explore the views of patients with type 1 diabetes and diabetes specialist nurses on the outcomes necessary to measure. One overarching theme, “Making sure the PROM fulfills its purpose,” was identified supported with data from both the patients and diabetes specialist nurses. This theme contained four categories: “The need for explanatory text after questions to ensure understanding and accurate response”; “Capturing individual needs in standardized questions”; “Getting to the heart of the patient’s problem”; and “The questions increase patient reflection.”
Conclusions:
We successfully conducted an iterative process that identified and adapted a digital PROM. Our stakeholders, patients and diabetes specialist nurses had a valuable impact on the results, facilitating the current implementation of the adapted digital PROM. The implementation of the digital PROM can represent a culture change where self-management and a focus on what the patient is addressing become the primary aim of a consultation. Clinical Trial: NA
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