Shazhan Amed
Current Organizations / Institutes
The organizations/institutes from the scholar's latest article
Previous Organizations / Institutes
The organizations / institutes from the scholar's other articles in the past ten years
Research Subjects
Research Interests
Shazhan Amed has a total of 275 co-authors. Here are the top co-authors by number of shared publications:
- Matthias Görges
BC Children's Hospital Research Institute Vancouver British Columbia Canada
15 shared publications - Tricia S. Tang
Division of Endocrinology, Department of Medicine, University of British Columbia, Vancouver, BC V5Z 1M9, Canada
14 shared publications - Jeffrey N. Bone
BC Children’s Hospital Research Institute, Vancouver, British Columbia, Canada
13 shared publications - Susan Pinkney
Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada and BC Children's Hospital Research Institute, Vancouver, BC, Canada
10 shared publications - Fatema S. Abdulhussein
Affiliation Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada
8 shared publications Jean-Paul Collet
A University of British Columbia, Department of Pediatrics, K4-213, 4480 Oak Street, Vancouver, BC V6H 3V4, Canada
6 shared publications
Latest Publications
- Open Access
- 30 October 2026
- Published by JMIR Publications Inc. in JMIR Research Protocols
- Vol. 15, e107634
Real-World Implementation and Evaluation of a Digital Health Platform for Children Living With Type 1 Diabetes: Protocol for a Real-World Implementation Study
Background: Digital platforms that integrate continuous glucose monitoring, patient-generated data, and clinical decision support could enable more proactive pediatric type 1 diabetes (T1D) care. Sustained uptake of digital platforms in routine practice is limited, and the evidence of effectiveness is mixed. Implementation science approaches are needed to clarify how context, workflows, and strategies shape adoption and outcomes. Haibu Diabetes is a new platform that brings together wearable, patient-reported, and clinical diabetes data to generate personalized, data-driven insights for patients and clinicians. Objective: This study evaluates the clinical effectiveness and implementation processes of Haibu Diabetes in routine pediatric T1D care using a hybrid design guided by an Implementation Research Logic Model. Methods: We will conduct a nonrandomized, quasi-experimental, type 2 hybrid implementation-effectiveness trial at a hospital that provides multidisciplinary pediatric diabetes care. Youth aged 3 to less than 18 years with T1D and caregivers will be onboarded to Haibu Diabetes as part of routine workflows; health care providers will use a clinician dashboard to review data, assign tasks/forms, and communicate asynchronously. Effectiveness analyses will compare Haibu Diabetes users to a matched control group drawn from the BC Pediatric Diabetes Registry. Effectiveness outcomes are hemoglobin A 1c , continuous glucose monitoring device-derived time in range over 12 months, and diabetes self-care behaviors. Implementation outcomes will be assessed using mixed methods guided by an Implementation Research Logic Model that links determinants, implementation strategies, mechanisms, and outcomes. These outcomes will include reach, adoption, feasibility, acceptability, and maintenance. Health care improvement outcomes will include patient and caregiver experience, clinician experience, and operational workflow indicators. Results: Study funding commenced in January 2023. Patient recruitment began in September 2026, and 7 participants had consented as of October 2026. Data collection is anticipated to conclude by December 2027, with analysis to follow. Study findings are expected to be published in summer 2028. Conclusions: This trial will generate real-world evidence on both effectiveness and the conditions required to implement and sustain a data-integrating digital platform in pediatric T1D care, informing scale-up and optimization.
- 30 October 2026
- Published by JMIR Publications Inc. in JMIR Research Protocols
- Vol. 15, e107634
Open AccessReal-World Implementation and Evaluation of a Digital Health Platform for Children Living With Type 1 Diabetes: Protocol for a Real-World Implementation Study
Background: Digital platforms that integrate continuous glucose monitoring, patient-generated data, and clinical decision support could enable more proactive pediatric type 1 diabetes (T1D) care. Sustained uptake of digital platforms in routine practice is limited, and the evidence of effectiveness is mixed. Implementation science approaches are needed to clarify how context, workflows, and strategies shape adoption and outcomes. Haibu Diabetes is a new platform that brings together wearable, patient-reported, and clinical diabetes data to generate personalized, data-driven insights for patients and clinicians. Objective: This study evaluates the clinical effectiveness and implementation processes of Haibu Diabetes in routine pediatric T1D care using a hybrid design guided by an Implementation Research Logic Model. Methods: We will conduct a nonrandomized, quasi-experimental, type 2 hybrid implementation-effectiveness trial at a hospital that provides multidisciplinary pediatric diabetes care. Youth aged 3 to less than 18 years with T1D and caregivers will be onboarded to Haibu Diabetes as part of routine workflows; health care providers will use a clinician dashboard to review data, assign tasks/forms, and communicate asynchronously. Effectiveness analyses will compare Haibu Diabetes users to a matched control group drawn from the BC Pediatric Diabetes Registry. Effectiveness outcomes are hemoglobin A 1c , continuous glucose monitoring device-derived time in range over 12 months, and diabetes self-care behaviors. Implementation outcomes will be assessed using mixed methods guided by an Implementation Research Logic Model that links determinants, implementation strategies, mechanisms, and outcomes. These outcomes will include reach, adoption, feasibility, acceptability, and maintenance. Health care improvement outcomes will include patient and caregiver experience, clinician experience, and operational workflow indicators. Results: Study funding commenced in January 2023. Patient recruitment began in September 2026, and 7 participants had consented as of October 2026. Data collection is anticipated to conclude by December 2027, with analysis to follow. Study findings are expected to be published in summer 2028. Conclusions: This trial will generate real-world evidence on both effectiveness and the conditions required to implement and sustain a data-integrating digital platform in pediatric T1D care, informing scale-up and optimization.
- Open Access
- 24 July 2026
- Published by JMIR Publications Inc. in JMIR Preprints
Protocol for the Real-World Implementation and Evaluation of a Digital Health Platform for Children Living with Type 1 Diabetes (Preprint)
BACKGROUND Digital platforms that integrate continuous glucose monitoring (CGM), patient-generated data, and clinical decision support could enable more proactive pediatric type 1 diabetes (T1D) care. Sustained uptake of digital platforms in routine practice is limited, and the evidence of effectiveness is mixed. Implementation-science approaches are needed to clarify how context, workflows, and strategies shape adoption and outcomes. Haibu Diabetes is a new platform that brings together wearable, patient-reported, and clinical diabetes data to generate personalized, data-driven insights for patients and clinicians. OBJECTIVE We will evaluate the clinical effectiveness and implementation processes of Haibu Diabetes in routine pediatric T1D care using a hybrid design guided by an Implementation Research Logic Model. METHODS We will conduct a nonrandomized, quasi-experimental, type 2 hybrid implementation-effectiveness trial at a hospital that provides multidisciplinary pediatric diabetes care. Youth aged 3 to <18 years with T1D and caregivers will be onboarded to Haibu Diabetes as part of routine workflows; health care providers will use a clinician dashboard to review data, assign tasks/forms, and communicate asynchronously. Effectiveness analyses will compare Haibu Diabetes users to a matched control group drawn from the BC Pediatric Diabetes Registry. Effectiveness outcomes are hemoglobin A1c (HbA1c), continuous glucose monitoring device-derived time-in-range (TIR) over 12 months, and diabetes self-care behaviours. Implementation outcomes will be assessed using mixed methods guided by an Implementation Research Logic Model that links determinants, implementation strategies, mechanisms, and outcomes. These outcomes will include reach, adoption, feasibility, acceptability, and maintenance. Healthcare improvement outcomes will include patient and caregiver experience, clinician experience, and operational workflow indicators. RESULTS Recruitment and data collection are planned; findings will report comparative glycemic and self-care outcomes and describe determinants and mechanisms influencing implementation. CONCLUSIONS This trial will generate real-world evidence on both effectiveness and the conditions required to implement and sustain a data-integrating digital platform in pediatric T1D care, informing scale-up and optimization. CLINICALTRIAL NCT07712809
- 24 July 2026
- Published by JMIR Publications Inc. in JMIR Preprints
Open AccessProtocol for the Real-World Implementation and Evaluation of a Digital Health Platform for Children Living with Type 1 Diabetes (Preprint)
BACKGROUND Digital platforms that integrate continuous glucose monitoring (CGM), patient-generated data, and clinical decision support could enable more proactive pediatric type 1 diabetes (T1D) care. Sustained uptake of digital platforms in routine practice is limited, and the evidence of effectiveness is mixed. Implementation-science approaches are needed to clarify how context, workflows, and strategies shape adoption and outcomes. Haibu Diabetes is a new platform that brings together wearable, patient-reported, and clinical diabetes data to generate personalized, data-driven insights for patients and clinicians. OBJECTIVE We will evaluate the clinical effectiveness and implementation processes of Haibu Diabetes in routine pediatric T1D care using a hybrid design guided by an Implementation Research Logic Model. METHODS We will conduct a nonrandomized, quasi-experimental, type 2 hybrid implementation-effectiveness trial at a hospital that provides multidisciplinary pediatric diabetes care. Youth aged 3 to <18 years with T1D and caregivers will be onboarded to Haibu Diabetes as part of routine workflows; health care providers will use a clinician dashboard to review data, assign tasks/forms, and communicate asynchronously. Effectiveness analyses will compare Haibu Diabetes users to a matched control group drawn from the BC Pediatric Diabetes Registry. Effectiveness outcomes are hemoglobin A1c (HbA1c), continuous glucose monitoring device-derived time-in-range (TIR) over 12 months, and diabetes self-care behaviours. Implementation outcomes will be assessed using mixed methods guided by an Implementation Research Logic Model that links determinants, implementation strategies, mechanisms, and outcomes. These outcomes will include reach, adoption, feasibility, acceptability, and maintenance. Healthcare improvement outcomes will include patient and caregiver experience, clinician experience, and operational workflow indicators. RESULTS Recruitment and data collection are planned; findings will report comparative glycemic and self-care outcomes and describe determinants and mechanisms influencing implementation. CONCLUSIONS This trial will generate real-world evidence on both effectiveness and the conditions required to implement and sustain a data-integrating digital platform in pediatric T1D care, informing scale-up and optimization. CLINICALTRIAL NCT07712809
- Open Access
- 1 February 2026
- Published by SAGE Publications in Digital Health
- Vol. 12
User-centered approaches for the design of digital diabetes education tools for children, youth and their families: A scoping review
Objective: Digital education interventions for children and youth with diabetes and their caregivers may improve self-management and clinical outcomes. To be effective and sustain use, these tools must be informed by users’ lived experiences, needs, and preferences. We aimed to describe how engagement of children, youth, and caregivers during the exploratory research phase of digital diabetes education tool development is reported in the literature, and to summarize recurring, generalizable end-user feedback. Methods: A scoping review was conducted using the Arksey and O’Malley framework. Medline and CINAHL were searched (January 2016–December 2024). Data were summarized using descriptive statistics and thematic synthesis. Results: A total of 667 studies were screened, and 16 were included. Engagement approaches were predominantly qualitative. Key themes identified by end-users included the unpredictability of diabetes, emotional burden, and youth–caregiver dynamics. Participants sought practical, trustworthy information to support self-management. Design preferences emphasized incentives and gamification, personalized content, and communication tools. There was limited diversity, with language eligibility restrictions, and only one study intentionally recruiting minority groups. Few studies described how user input was prioritized or incorporated into design decisions, and frameworks or models to guide engagement were applied inconsistently. Conclusion: There is a clear need to maximize end-user engagement in the development of digital health tools for children and youth with diabetes and their families, and improve reporting of such processes. Greater attention to equity and inclusion during exploratory research is required to enhance generalizability. These findings can help guide the development of digital education resources.
- 1 February 2026
- Published by SAGE Publications in Digital Health
- Vol. 12
Open AccessUser-centered approaches for the design of digital diabetes education tools for children, youth and their families: A scoping review
Objective: Digital education interventions for children and youth with diabetes and their caregivers may improve self-management and clinical outcomes. To be effective and sustain use, these tools must be informed by users’ lived experiences, needs, and preferences. We aimed to describe how engagement of children, youth, and caregivers during the exploratory research phase of digital diabetes education tool development is reported in the literature, and to summarize recurring, generalizable end-user feedback. Methods: A scoping review was conducted using the Arksey and O’Malley framework. Medline and CINAHL were searched (January 2016–December 2024). Data were summarized using descriptive statistics and thematic synthesis. Results: A total of 667 studies were screened, and 16 were included. Engagement approaches were predominantly qualitative. Key themes identified by end-users included the unpredictability of diabetes, emotional burden, and youth–caregiver dynamics. Participants sought practical, trustworthy information to support self-management. Design preferences emphasized incentives and gamification, personalized content, and communication tools. There was limited diversity, with language eligibility restrictions, and only one study intentionally recruiting minority groups. Few studies described how user input was prioritized or incorporated into design decisions, and frameworks or models to guide engagement were applied inconsistently. Conclusion: There is a clear need to maximize end-user engagement in the development of digital health tools for children and youth with diabetes and their families, and improve reporting of such processes. Greater attention to equity and inclusion during exploratory research is required to enhance generalizability. These findings can help guide the development of digital education resources.
- 23 January 2026
- Published by Elsevier in Canadian Journal of Diabetes
- Vol. 50 (3) , 171-176
Impact of Prescription Data on Administrative Data Case Definitions of Pediatric Type 1 and 2 Diabetes: A Validation Study
- 23 January 2026
- Published by Elsevier in Canadian Journal of Diabetes
- Vol. 50 (3) , 171-176
Impact of Prescription Data on Administrative Data Case Definitions of Pediatric Type 1 and 2 Diabetes: A Validation Study
- Open Access
- 31 October 2025
- Published by Public Library of Science (PLoS) in PLOS Digital Health
- Vol. 4 (10) , e0000861
Caregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: Findings from a pilot clinical trial
Diabetes technology generates vital health data, but healthcare professionals (HCP) and patients must navigate multiple platforms to access it. We developed a digital health platform, co-designed with patients and families living with type 1 diabetes (T1D) and their HCPs, that aim to support a collaborative care experience through shared access to diabetes data, clinical recommendations, and resources. We describe caregivers’ views on the platform’s impact on clinic visits and child self-management in children with T1D. A six-month observational pilot study at BC Children’s Hospital Diabetes Clinic in British Columbia, Canada, gathered data through surveys and interviews. Surveys were administered to caregivers and HCPs at different time points throughout the study; 18 qualitative interviews were conducted with caregivers at the conclusion of the study. Quantitative data were summarized descriptively. Interview data were transcribed, coded using open and systematic coding, and subsequent inductive thematic analysis. Eighteen caregivers completed the surveys, and 11 HCP participants submitted 41 surveys (approximately 3–4 each) after using the platform. Most caregivers (61%; 11/18) found the platform helpful, and 56% (10/18) reported that using the platform made their clinical visits and recommendations more personalized. Nearly all HCPs (90%; 37/41) were satisfied with the platform’s ability to support clinical visits. Themes identified from caregiver qualitative interviews revealed that (1) the platform provided a convenient connection that improved preparedness and empowered caregivers in managing their child’s T1D; (2) the platform’s value was driven by the healthcare team’s usage of it; and (3) caregivers felt hopeful that the platform could better support their child’s T1D management. The platform could foster a collaborative and personalized care experience that enables caregivers to engage in diabetes self-management and feel connected to their healthcare team. These results will guide the future development, evaluation, and implementation of the platform.
- 31 October 2025
- Published by Public Library of Science (PLoS) in PLOS Digital Health
- Vol. 4 (10) , e0000861
Open AccessCaregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: Findings from a pilot clinical trial
Diabetes technology generates vital health data, but healthcare professionals (HCP) and patients must navigate multiple platforms to access it. We developed a digital health platform, co-designed with patients and families living with type 1 diabetes (T1D) and their HCPs, that aim to support a collaborative care experience through shared access to diabetes data, clinical recommendations, and resources. We describe caregivers’ views on the platform’s impact on clinic visits and child self-management in children with T1D. A six-month observational pilot study at BC Children’s Hospital Diabetes Clinic in British Columbia, Canada, gathered data through surveys and interviews. Surveys were administered to caregivers and HCPs at different time points throughout the study; 18 qualitative interviews were conducted with caregivers at the conclusion of the study. Quantitative data were summarized descriptively. Interview data were transcribed, coded using open and systematic coding, and subsequent inductive thematic analysis. Eighteen caregivers completed the surveys, and 11 HCP participants submitted 41 surveys (approximately 3–4 each) after using the platform. Most caregivers (61%; 11/18) found the platform helpful, and 56% (10/18) reported that using the platform made their clinical visits and recommendations more personalized. Nearly all HCPs (90%; 37/41) were satisfied with the platform’s ability to support clinical visits. Themes identified from caregiver qualitative interviews revealed that (1) the platform provided a convenient connection that improved preparedness and empowered caregivers in managing their child’s T1D; (2) the platform’s value was driven by the healthcare team’s usage of it; and (3) caregivers felt hopeful that the platform could better support their child’s T1D management. The platform could foster a collaborative and personalized care experience that enables caregivers to engage in diabetes self-management and feel connected to their healthcare team. These results will guide the future development, evaluation, and implementation of the platform.
- 23 September 2025
- Published by Elsevier in Canadian Journal of Diabetes
- Vol. 49 (8) , 454-460.e9
Identifying Potential Sustainable and Scalable Interventions to Recognize Signs of Diabetes in Children Across Canada
- 23 September 2025
- Published by Elsevier in Canadian Journal of Diabetes
- Vol. 49 (8) , 454-460.e9
Identifying Potential Sustainable and Scalable Interventions to Recognize Signs of Diabetes in Children Across Canada
- Open Access
- 9 September 2025
- Published by Wiley in Diabetic Medicine
- Vol. 42 (11) , e70133
A longitudinal cohort study describing childhood type 1 diabetes incidence and prevalence rates in British Columbia, Canada over 27 years (1997–2023)
Aims: Our study described incidence and prevalence trends of type 1 diabetes in children and youth under 20 years of age from 1997 to 2023 in the Canadian province of British Columbia (BC) and assessed for a 4‐, 5‐, or 6‐year cyclicity or increase in incidence during the COVID‐19 pandemic. Methods: Using linked population‐level databases and a validated case‐finding and diabetes differentiating algorithm, we identified children with type 1 diabetes diagnosed between 1997 and 2023. Data sources included hospital admissions, outpatient physician visits, and dispensed prescriptions. Population denominators were based on annual age‐ and sex‐stratified population estimates. We calculated incidence per 100,000 and prevalence per 100 cases, using JoinPoint regression to identify trend changes. Cyclical patterns were tested using sine and cosine terms. Results: From 1997 to 2023, the incidence of paediatric type 1 diabetes increased markedly until 2008 and then declined very gradually, with similar patterns across age and sex. Incidence was higher in boys, highest among children aged 5 to 14 years, and lowest in those aged 15 to 19 years. After 2012, prevalent cases stabilized in those under 10 and decreased in those over 10 years old. There was no evidence of cyclical trends or changes in incidence or prevalence during or after the COVID‐19 pandemic. Conclusions/Interpretation: We report a stabilization of type 1 diabetes incidence and prevalence, along with the absence of pandemic‐related increases. These trends may in part reflect demographic changes in British Columbia's paediatric population, including a growing proportion of children from immigrant backgrounds with historically lower type 1 diabetes risk. Unfortunately, our data sources do not include ethnicity, limiting our ability to explore these patterns directly. This study will support the optimization of resource allocation and inform healthcare improvement and long‐term management of childhood type 1 diabetes.
- 9 September 2025
- Published by Wiley in Diabetic Medicine
- Vol. 42 (11) , e70133
Open AccessA longitudinal cohort study describing childhood type 1 diabetes incidence and prevalence rates in British Columbia, Canada over 27 years (1997–2023)
Aims: Our study described incidence and prevalence trends of type 1 diabetes in children and youth under 20 years of age from 1997 to 2023 in the Canadian province of British Columbia (BC) and assessed for a 4‐, 5‐, or 6‐year cyclicity or increase in incidence during the COVID‐19 pandemic. Methods: Using linked population‐level databases and a validated case‐finding and diabetes differentiating algorithm, we identified children with type 1 diabetes diagnosed between 1997 and 2023. Data sources included hospital admissions, outpatient physician visits, and dispensed prescriptions. Population denominators were based on annual age‐ and sex‐stratified population estimates. We calculated incidence per 100,000 and prevalence per 100 cases, using JoinPoint regression to identify trend changes. Cyclical patterns were tested using sine and cosine terms. Results: From 1997 to 2023, the incidence of paediatric type 1 diabetes increased markedly until 2008 and then declined very gradually, with similar patterns across age and sex. Incidence was higher in boys, highest among children aged 5 to 14 years, and lowest in those aged 15 to 19 years. After 2012, prevalent cases stabilized in those under 10 and decreased in those over 10 years old. There was no evidence of cyclical trends or changes in incidence or prevalence during or after the COVID‐19 pandemic. Conclusions/Interpretation: We report a stabilization of type 1 diabetes incidence and prevalence, along with the absence of pandemic‐related increases. These trends may in part reflect demographic changes in British Columbia's paediatric population, including a growing proportion of children from immigrant backgrounds with historically lower type 1 diabetes risk. Unfortunately, our data sources do not include ethnicity, limiting our ability to explore these patterns directly. This study will support the optimization of resource allocation and inform healthcare improvement and long‐term management of childhood type 1 diabetes.
- Open Access
Caregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: findings from a pilot clinical trial
Diabetes technology generates vital health data, but healthcare professionals (HCP) and patients must navigate multiple platforms to access it. We developed a digital health platform, co-designed with patients and families living with type 1 diabetes (T1D) and their HCPs, that aim to support a collaborative care experience through shared access to diabetes data, clinical recommendations, and resources. We describe caregivers’ views on the platform’s impact on clinic visits and child self-management in children with T1D. A six-month observational pilot study at BC Children’s Hospital Diabetes Clinic in British Columbia, Canada, gathered data through surveys and interviews. Surveys were administered to caregivers and HCPs at different time points throughout the study; 18 qualitative interviews were conducted with caregivers at the conclusion of the study. Quantitative data were summarized descriptively. Interview data were transcribed, coded using open and systematic coding, and subsequent inductive thematic analysis. Eighteen caregivers completed the surveys, and 11 HCP participants submitted 41 surveys (approximately 3-4 each) after using the platform. Most caregivers (61%; 11/18) found the platform helpful, and 56% (10/18) reported that using the platform made their clinical visits and recommendations more personalized. Nearly all HCPs (90%; 37/41) were satisfied with the platform’s ability to support clinical visits. Themes identified from caregiver qualitative interviews revealed that (1) the platform provided a convenient connection that improved preparedness and empowered caregivers in managing their child’s T1D; (2) the platform’s value was driven by the healthcare team’s usage of it; and (3) caregivers felt hopeful that the platform could better support their child’s T1D management. The platform could foster a collaborative and personalized care experience that enables caregivers to engage in diabetes self-management and feel connected to their healthcare team. These results will guide the future development, evaluation, and implementation of the platform. Author Summary: Managing type 1 diabetes (T1D) involves keeping track of a lot of health information, like blood sugar levels, insulin doses, and food intake. Right now, families and healthcare providers often need to use several different apps or systems to access this information, which can be confusing and hard to manage. To make this easier, we created a new digital platform that puts all the important diabetes data in one place. We designed it together with families of children with T1D and their healthcare providers, so it could truly meet their needs. The goal was to help families and doctors work together more easily by sharing information, treatment recommendations, and helpful resources. We tested the platform during a six-month pilot study at BC Children’s Hospital Diabetes Clinic in British Columbia, Canada. We asked parents and caregivers, as well as healthcare professionals, to share their thoughts through surveys and interviews. In total, 18 caregivers completed surveys, and 11 healthcare providers filled out 41 surveys. At the end of the study, we also interviewed 18 caregivers to hear more about their experience using the platform. The results were promising. Most caregivers (61%) said the platform was helpful in managing their child’s diabetes. Over half (56%) felt that their visits with their doctor and diabetes team became more personal and tailored to their child’s specific needs. Nearly all of the healthcare providers (90%) said the platform helped improve their clinical visits. Caregivers also shared some deeper insights during interviews. They said the platform helped them feel more prepared for appointments and more confident in managing their child’s diabetes. They also noted that the platform worked best when their healthcare team actively used it. Many felt hopeful that this kind of tool could make a big difference in their child’s day-to-day diabetes care. In short, this digital platform shows real potential to improve the way families and healthcare teams manage type 1 diabetes together. It could lead to more personalized care, improved communication and connection, and better support for both children and their caregivers. These early results will help us improve the platform and guide how it’s used in the future.
Open AccessCaregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: findings from a pilot clinical trial
Diabetes technology generates vital health data, but healthcare professionals (HCP) and patients must navigate multiple platforms to access it. We developed a digital health platform, co-designed with patients and families living with type 1 diabetes (T1D) and their HCPs, that aim to support a collaborative care experience through shared access to diabetes data, clinical recommendations, and resources. We describe caregivers’ views on the platform’s impact on clinic visits and child self-management in children with T1D. A six-month observational pilot study at BC Children’s Hospital Diabetes Clinic in British Columbia, Canada, gathered data through surveys and interviews. Surveys were administered to caregivers and HCPs at different time points throughout the study; 18 qualitative interviews were conducted with caregivers at the conclusion of the study. Quantitative data were summarized descriptively. Interview data were transcribed, coded using open and systematic coding, and subsequent inductive thematic analysis. Eighteen caregivers completed the surveys, and 11 HCP participants submitted 41 surveys (approximately 3-4 each) after using the platform. Most caregivers (61%; 11/18) found the platform helpful, and 56% (10/18) reported that using the platform made their clinical visits and recommendations more personalized. Nearly all HCPs (90%; 37/41) were satisfied with the platform’s ability to support clinical visits. Themes identified from caregiver qualitative interviews revealed that (1) the platform provided a convenient connection that improved preparedness and empowered caregivers in managing their child’s T1D; (2) the platform’s value was driven by the healthcare team’s usage of it; and (3) caregivers felt hopeful that the platform could better support their child’s T1D management. The platform could foster a collaborative and personalized care experience that enables caregivers to engage in diabetes self-management and feel connected to their healthcare team. These results will guide the future development, evaluation, and implementation of the platform. Author Summary: Managing type 1 diabetes (T1D) involves keeping track of a lot of health information, like blood sugar levels, insulin doses, and food intake. Right now, families and healthcare providers often need to use several different apps or systems to access this information, which can be confusing and hard to manage. To make this easier, we created a new digital platform that puts all the important diabetes data in one place. We designed it together with families of children with T1D and their healthcare providers, so it could truly meet their needs. The goal was to help families and doctors work together more easily by sharing information, treatment recommendations, and helpful resources. We tested the platform during a six-month pilot study at BC Children’s Hospital Diabetes Clinic in British Columbia, Canada. We asked parents and caregivers, as well as healthcare professionals, to share their thoughts through surveys and interviews. In total, 18 caregivers completed surveys, and 11 healthcare providers filled out 41 surveys. At the end of the study, we also interviewed 18 caregivers to hear more about their experience using the platform. The results were promising. Most caregivers (61%) said the platform was helpful in managing their child’s diabetes. Over half (56%) felt that their visits with their doctor and diabetes team became more personal and tailored to their child’s specific needs. Nearly all of the healthcare providers (90%) said the platform helped improve their clinical visits. Caregivers also shared some deeper insights during interviews. They said the platform helped them feel more prepared for appointments and more confident in managing their child’s diabetes. They also noted that the platform worked best when their healthcare team actively used it. Many felt hopeful that this kind of tool could make a big difference in their child’s day-to-day diabetes care. In short, this digital platform shows real potential to improve the way families and healthcare teams manage type 1 diabetes together. It could lead to more personalized care, improved communication and connection, and better support for both children and their caregivers. These early results will help us improve the platform and guide how it’s used in the future.
- 1 March 2025
- Published by SAGE Publications in Diabetes Technology & Therapeutics
- Vol. 27 (3) , 194-201
The Impact of Public Policy on Equitable Access to Technology for Children and Youth Living with Type 1 Diabetes in British Columbia, Canada
Objective: Structural inequities impede technology uptake in marginalized populations living with type 1 diabetes (T1D). Our objective was to describe hemoglobin A1c (HbA1c), time in range (TIR), and pump use to evaluate the impact of a universal funding policy for continuous glucose monitoring (CGM) across levels of deprivation in children with T1D in the Canadian province of British Columbia (BC). Methods: Patients with T1D and at least one outpatient visit after June 10, 2020 (1-year before universal CGM funding) who were enrolled in the BC Pediatric Diabetes Registry were included (n = 477). The Canadian Index of Multiple Deprivation (quintile 1 = least deprived; quintile 5 = most deprived) was determined using postal code. Mixed effects models were used to describe HbA1c, TIR, and pump use, and an interrupted time series generalized additive model estimated the change in CGM use pre- and postintroduction of universal coverage. Results: No differences were observed among the five levels of deprivation for HbA1c and TIR; however, for residential instability, those with the highest level of deprivation had a lower probability of pump use (-18.9%, 95% confidence interval [CI] = -26.1% to -11.7% for quintile 5 vs. 1). There was an increase in CGM uptake across all levels of deprivation 1-year after introduction of universal CGM funding. For example, the difference in sensor use from the most to least deprived situational group was -21.0% (-35.4%, -6.6%) at the time of universal coverage and shrank to -4.6% (-21.6%, 12.4%) after 12 months of coverage. However, an equity gap in CGM use persisted between the least and most deprived groups (-21.9, 95% CI = -34.5 to -9.4 for quintile 5 vs. 1 in economic dependency). Conclusions: Universal coverage of CGM improved uptake; however, equity gaps persisted. More research is needed to explore nonfinancial barriers to diabetes technology use in marginalized populations.
- 1 March 2025
- Published by SAGE Publications in Diabetes Technology & Therapeutics
- Vol. 27 (3) , 194-201
The Impact of Public Policy on Equitable Access to Technology for Children and Youth Living with Type 1 Diabetes in British Columbia, Canada
Objective: Structural inequities impede technology uptake in marginalized populations living with type 1 diabetes (T1D). Our objective was to describe hemoglobin A1c (HbA1c), time in range (TIR), and pump use to evaluate the impact of a universal funding policy for continuous glucose monitoring (CGM) across levels of deprivation in children with T1D in the Canadian province of British Columbia (BC). Methods: Patients with T1D and at least one outpatient visit after June 10, 2020 (1-year before universal CGM funding) who were enrolled in the BC Pediatric Diabetes Registry were included (n = 477). The Canadian Index of Multiple Deprivation (quintile 1 = least deprived; quintile 5 = most deprived) was determined using postal code. Mixed effects models were used to describe HbA1c, TIR, and pump use, and an interrupted time series generalized additive model estimated the change in CGM use pre- and postintroduction of universal coverage. Results: No differences were observed among the five levels of deprivation for HbA1c and TIR; however, for residential instability, those with the highest level of deprivation had a lower probability of pump use (-18.9%, 95% confidence interval [CI] = -26.1% to -11.7% for quintile 5 vs. 1). There was an increase in CGM uptake across all levels of deprivation 1-year after introduction of universal CGM funding. For example, the difference in sensor use from the most to least deprived situational group was -21.0% (-35.4%, -6.6%) at the time of universal coverage and shrank to -4.6% (-21.6%, 12.4%) after 12 months of coverage. However, an equity gap in CGM use persisted between the least and most deprived groups (-21.9, 95% CI = -34.5 to -9.4 for quintile 5 vs. 1 in economic dependency). Conclusions: Universal coverage of CGM improved uptake; however, equity gaps persisted. More research is needed to explore nonfinancial barriers to diabetes technology use in marginalized populations.
- Open Access
- 20 January 2025
- Published by JMIR Publications Inc. in JMIR Diabetes
- Vol. 10 (1) , e64267
Exploring the Needs and Preferences of Users and Parents to Design a Mobile App to Deliver Mental Health Peer Support to Adolescents With Type 1 Diabetes: Qualitative Study
Background: Beyond physical health, managing type 1 diabetes (T1D) also encompasses a psychological component, including diabetes distress, that is, the worries, fears, and frustrations associated with meeting self-care demands over the lifetime. While digital health solutions have been increasingly used to address emotional health in diabetes, these technologies may not uniformly meet the unique concerns and technological savvy across all age groups. Objective: This study aimed to explore the mental health needs of adolescents with T1D, determine their preferred modalities for app-based mental health support, and identify desirable design features for peer-delivered mental health support modeled on an app designed for adults with T1D. Methods: A semistructured qualitative focus group study was conducted with adolescents with T1D and parents of adolescents with T1D. Data were collected through pre–focus group surveys, including sociodemographic background, diabetes status, health care experiences, and focus group sessions, including their opinions on peer support and technology. A thematic analysis following an inductive and iterative process was performed to develop themes and subthemes from the collected information. Results: Focus group participants included 10 adolescents (mean 16, SD 1 years; 8/10, 80% female; who had been living with diabetes for an average of 9, SD 5 years) and 10 parents (mean age 51, SD 7 years; 9/10, 90% female). Four core themes emerged: (1) experience: navigating adolescence with T1D, (2) empowerment: support systems that enabled better management of their T1D, (3) obstacles: societal barriers that affect adolescents’ T1D management, and (4) innovation: adolescent-driven preferences for digital peer support platforms. Conclusions: App-based peer support offers a promising avenue for addressing the mental health needs of adolescents with T1D. Understanding the unique support needs of these adolescents and using this information to suggest design considerations for a mental health peer support app is an important step toward addressing their complex emotional and social challenges.
- 20 January 2025
- Published by JMIR Publications Inc. in JMIR Diabetes
- Vol. 10 (1) , e64267
Open AccessExploring the Needs and Preferences of Users and Parents to Design a Mobile App to Deliver Mental Health Peer Support to Adolescents With Type 1 Diabetes: Qualitative Study
Background: Beyond physical health, managing type 1 diabetes (T1D) also encompasses a psychological component, including diabetes distress, that is, the worries, fears, and frustrations associated with meeting self-care demands over the lifetime. While digital health solutions have been increasingly used to address emotional health in diabetes, these technologies may not uniformly meet the unique concerns and technological savvy across all age groups. Objective: This study aimed to explore the mental health needs of adolescents with T1D, determine their preferred modalities for app-based mental health support, and identify desirable design features for peer-delivered mental health support modeled on an app designed for adults with T1D. Methods: A semistructured qualitative focus group study was conducted with adolescents with T1D and parents of adolescents with T1D. Data were collected through pre–focus group surveys, including sociodemographic background, diabetes status, health care experiences, and focus group sessions, including their opinions on peer support and technology. A thematic analysis following an inductive and iterative process was performed to develop themes and subthemes from the collected information. Results: Focus group participants included 10 adolescents (mean 16, SD 1 years; 8/10, 80% female; who had been living with diabetes for an average of 9, SD 5 years) and 10 parents (mean age 51, SD 7 years; 9/10, 90% female). Four core themes emerged: (1) experience: navigating adolescence with T1D, (2) empowerment: support systems that enabled better management of their T1D, (3) obstacles: societal barriers that affect adolescents’ T1D management, and (4) innovation: adolescent-driven preferences for digital peer support platforms. Conclusions: App-based peer support offers a promising avenue for addressing the mental health needs of adolescents with T1D. Understanding the unique support needs of these adolescents and using this information to suggest design considerations for a mental health peer support app is an important step toward addressing their complex emotional and social challenges.