Evidence map›Paper›PMID 42709993›Full record

ArticleEndocrinology, diabetes & metabolism2026

Understanding Diabetes Distress Across Adulthood in Type 1 Diabetes: A User-Centered Design Study.

Rachel Rayden, Gladys Crespo-Ramos, Molly Finnan, Claire Hoogendoorn, Todd Farchione, Jeffrey S Gonzalez

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Article in Endocrinology, diabetes & metabolism, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

6 authors.

Rachel RaydenAlbert Einstein College of Medicine, New York, New York, USA.ORCID https://orcid.org/0009-0006-2384-9957
Gladys Crespo-RamosDepartment of Medicine (Endocrinology), Albert Einstein College of Medicine, New York, New York, USA.ORCID https://orcid.org/0000-0001-8781-1858
Molly FinnanFleischer Institute of Diabetes and Metabolism, Montefiore Medical Center-Albert Einstein College of Medicine, New York, New York, USA.
Claire HoogendoornFerkauf Graduate School of Psychology, Yeshiva University, New York, New York, USA.
Todd FarchioneDepartment of Psychological and Brain Sciences, Boston University, Boston, Massachusetts, USA.ORCID https://orcid.org/0000-0002-6494-6829
Jeffrey S GonzalezDepartment of Medicine (Endocrinology), Albert Einstein College of Medicine, New York, New York, USA.

Funding

Breakthrough T1D 4-SRA-2021-1071-M-BBreakthrough T1D 4-SRA-2022-1187-M-B
6 · The paper itself

Abstract

aimsDiabetes distress is common among adults with Type 1 diabetes (T1D) and is associated with poorer psychological and medical outcomes. While diabetes distress occurs across the lifespan, less is known about how its sources differ by age and how patient input can inform intervention development.

methodsUsing a user-centred design (UCD) approach, we conducted six virtual group sessions with adults with T1D to inform the development of a cognitive-behavioural intervention targeting diabetes distress. Participants included young adults aged 18-34 recruited from an academic medical centre and adults aged 35-64 recruited from a national patient advisory council. Sessions were audio-recorded, transcribed and analysed using a modified inductive qualitative approach.

resultsNineteen adults with T1D participated. Across age groups, participants identified shared domains of diabetes distress, including competing daily priorities, financial and insurance-related barriers, interpersonal relationships and healthcare system challenges. However, important age-related differences emerged. Young adults emphasized immediate disruptions to daily life, identity, competing priorities and technology-related burden, whereas adults aged 35-64 highlighted cumulative fatigue, fear of complications, caregiving responsibilities and long-term concerns related to healthcare access and financial sustainability.

conclusionsDiabetes distress is a pervasive but age-contextualized experience among adults with T1D. Incorporating stakeholder perspectives revealed both shared and age-specific drivers of distress, supporting the need for life stage-responsive psychosocial interventions to address diabetes distress in adults with T1D.

Indexed as

Diabetes Mellitus, Type 1Psychological DistressStress, PsychologicalAdolescentAdultFemaleHumansMaleMiddle AgedYoung Adultdiabetes distressdiabetes technologytype 1 diabetesyoung adult

Identifiers

PMID42709993
PMCPMC13552995

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.