Beyond Hemoglobin A1c-Outcomes That Matter to Individuals With Type 1 Diabetes in Adopting Digital Health Interventions for Self-Management Support: Qualitative Study

Benjamin Markowitz; Stephanie de Sequeira; Adhiyat Najam; Cheryl Pritlove; Dana Greenberg; Marley Greenberg; Chee-Mei Chan; Gurpreet Lakhanpal; Samyukta Jagadeesh; Geetha Mukerji; Rayzel Shulman; Holly O Witteman; Catherine H Yu; Gillian L Booth; Janet A Parsons; T1ME Patient Advisory Committee

doi:10.2196/60190

Beyond Hemoglobin A1c-Outcomes That Matter to Individuals With Type 1 Diabetes in Adopting Digital Health Interventions for Self-Management Support: Qualitative Study

JMIR Diabetes. 2024 Nov 7:9:e60190. doi: 10.2196/60190.

Authors

Benjamin Markowitz^#^{1

2}, Stephanie de Sequeira^#¹, Adhiyat Najam¹, Cheryl Pritlove^{1

3}, Dana Greenberg⁴, Marley Greenberg⁴, Chee-Mei Chan⁵, Gurpreet Lakhanpal¹, Samyukta Jagadeesh⁶, Geetha Mukerji^{3

7}, Rayzel Shulman⁸, Holly O Witteman^{9

10

11

12}, Catherine H Yu^{1

3}, Gillian L Booth^#^{1

3}, Janet A Parsons^#^{1

3}; T1ME Patient Advisory Committee

Affiliations

¹ Unity Health Toronto, Toronto, ON, Canada.
² University of Limerick School of Medicine, Limerick, Ireland.
³ University of Toronto, Toronto, ON, Canada.
⁴ Diabetes Action Canada, Toronto, ON, Canada.
⁵ University Health Network, Toronto, ON, Canada.
⁶ Trillium Health Partners, Mississauga, ON, Canada.
⁷ Women's College Hospital, Toronto, ON, Canada.
⁸ The Hospital for Sick Children, Toronto, ON, Canada.
⁹ Université Laval, Quebec City, QC, Canada.
¹⁰ VITAM Research Centre for Sustainable Health, Quebec City, QC, Canada.
¹¹ CHU de Québec-Université Laval, Quebec City, QC, Canada.
¹² Ottawa Hospital Research Institute, Ottawa, ON, Canada.

^# Contributed equally.

PMID: 39509700
PMCID: PMC11582490
DOI: 10.2196/60190

Abstract

Background: Type 1 diabetes is a demanding chronic condition that requires diligent blood glucose monitoring and timely insulin administration by patients who must integrate self-management into their daily lives.

Objective: This study aimed to better understand what outcome measures are important to individuals living with type 1 diabetes (T1D) in Ontario, Canada, to help inform the development of type 1 diabetes virtual self-management Education and support (T1ME) trial.

Methods: A qualitative approach was used, in which we conducted 6 focus groups with a total of 24 adult participants living with T1D (from age 18 to >65 years) in Ontario. Each focus group was semistructured in nature; participants were encouraged to talk openly about their experiences with T1D self-management and provide their perspectives on more focused topics such as technology and relationships with health care providers.

Results: An interpretive analysis helped us devise a framework for our results that centered around 6 main discussion themes: (1) adapting self-management to meet evolving needs, (2) looking "beyond A1c" toward more personalized indicators of glycemic management, (3) the benefits and challenges of adopting new T1D technology, (4) establishing trusting relationships with diabetes care providers, (5) perceived benefits of peer support, and (6) pre- and post-COVID-19 perspectives on virtual care.

Conclusions: Our goal is for these findings to help facilitate the development of patient-oriented outcome measures that are in line with the unique needs and preferences of T1D patients in this new, more virtual landscape of clinical care, education, and self-management support.

Keywords: T1D self-management; mobile phone; patient reported outcome measures; patient reported outcomes; type 1 diabetes; virtual care.

©Benjamin Markowitz, Stephanie de Sequeira, Adhiyat Najam, Cheryl Pritlove, Dana Greenberg, Marley Greenberg, Chee-Mei Chan, Gurpreet Lakhanpal, Samyukta Jagadeesh, Geetha Mukerji, Rayzel Shulman, Holly O Witteman, Catherine H Yu, Gillian L Booth, Janet A Parsons, The T1ME Patient Advisory Committee. Originally published in JMIR Diabetes (https://diabetes.jmir.org), 07.11.2024.