Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers

Laura Cudizio; Steven James; Nisa M Maruthur; Sze May Ng; Sarah Lyons; Aleksandra Araszkiewicz; Apoorva Gomber; Frank Snoek; Eva Toft; Jill Weissberg-Benchell; Carine de Beaufort

doi:10.1159/000545118

Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers

Laura Cudizio
, Steven James
, Nisa M Maruthur
, Sze May Ng
, Sarah Lyons
, Aleksandra Araszkiewicz
, Apoorva Gomber
, Frank Snoek
, Eva Toft
, Jill Weissberg-Benchell
, Carine de Beaufort

Faculty of Medical Sciences of Santa Casa de São Paulo
University of the Sunshine Coast
Johns Hopkins University School of Medicine
University of Manchester
Mersey and West Lancashire Teaching Hospitals NHS Foundation Trust
University of Liverpool
Baylor College of Medicine
Poznan University of Medical Sciences
Brigham and Women's Hospital
Vrije Universiteit Amsterdam
Karolinska Institutet
Ann and Robert H. Lurie Children's Hospital of Chicago
University of Luxembourg

Research output: Contribution to journal › Article (journal) › peer-review

1 Citation (Scopus)

33 Downloads (Pure)

Abstract

INTRODUCTION: Young adults with diabetes face many challenges during emerging adulthood. Our study aimed to identify experiences and perceptions of people with diabetes (PwD) (aged 14-25 years) and their carers, around transition planning, and the actual transfer from pediatric to adult diabetes healthcare services.

METHODS: Data were collected via an online global survey (seven language options), broadly advertised by the scientific societies ISPAD, EASD, patient advocates, team members and partners, via newsletters, websites, e-mails, and social media.

RESULTS: There were 146 respondents from 29 countries. Of these, 90 (61.6%) were PwD age 18.5 (±3.6 years), diagnosed at 9.0 (±4.4 years), and 56 (38.3%) carers. Respondents receiving care in pediatric units (vs. adult) (58.2%) had higher care satisfaction and more frequent appointments (p < 0.05); 65.1% of respondents reported a fixed transfer age (≥18 years). Overall, 45.2% detailed transfer-related concerns; 44.3% felt their psychosocial needs were adequately addressed, 24.7% felt unprepared for areas of self-management. Combined pediatric and adult diabetes clinics (56.2%), and psychologist support (50.7%) were most desired.

CONCLUSION: Findings highlight the urgent need to improve the transition process. A joint ISPAD, EASD, and ADA consensus report is in preparation.

Original language	English
Pages (from-to)	1-13
Number of pages	13
Journal	Hormone Research in Paediatrics
Early online date	26 Mar 2025
DOIs	https://doi.org/10.1159/000545118
Publication status	Published - 26 Mar 2025

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

Adolescents
Emerging adults
Low and middle income
Transition
Type 1 diabetes
Young adults

Access to Document

10.1159/000545118

Final accepted manuscript_13122024Accepted author manuscript, 5.84 MBLicence: CC BY

Cite this

Cudizio, L., James, S., Maruthur, N. M., Ng, S. M., Lyons, S., Araszkiewicz, A., Gomber, A., Snoek, F., Toft, E., Weissberg-Benchell, J., & de Beaufort, C. (2025). Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers. Hormone Research in Paediatrics, 1-13. https://doi.org/10.1159/000545118

@article{aac11f8296834d44b0614e8c38abdf25,

title = "Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers",

abstract = "INTRODUCTION: Young adults with diabetes face many challenges during emerging adulthood. Our study aimed to identify experiences and perceptions of people with diabetes (PwD) (aged 14-25 years) and their carers, around transition planning, and the actual transfer from pediatric to adult diabetes healthcare services.METHODS: Data were collected via an online global survey (seven language options), broadly advertised by the scientific societies ISPAD, EASD, patient advocates, team members and partners, via newsletters, websites, e-mails, and social media.RESULTS: There were 146 respondents from 29 countries. Of these, 90 (61.6\%) were PwD age 18.5 (±3.6 years), diagnosed at 9.0 (±4.4 years), and 56 (38.3\%) carers. Respondents receiving care in pediatric units (vs. adult) (58.2\%) had higher care satisfaction and more frequent appointments (p < 0.05); 65.1\% of respondents reported a fixed transfer age (≥18 years). Overall, 45.2\% detailed transfer-related concerns; 44.3\% felt their psychosocial needs were adequately addressed, 24.7\% felt unprepared for areas of self-management. Combined pediatric and adult diabetes clinics (56.2\%), and psychologist support (50.7\%) were most desired.CONCLUSION: Findings highlight the urgent need to improve the transition process. A joint ISPAD, EASD, and ADA consensus report is in preparation.",

keywords = "Adolescents, Emerging adults, Low and middle income, Transition, Type 1 diabetes, Young adults",

author = "Laura Cudizio and Steven James and Maruthur, \{Nisa M\} and Ng, \{Sze May\} and Sarah Lyons and Aleksandra Araszkiewicz and Apoorva Gomber and Frank Snoek and Eva Toft and Jill Weissberg-Benchell and \{de Beaufort\}, Carine",

note = "Publisher Copyright: {\textcopyright} 2025 S. Karger AG, Basel.",

year = "2025",

month = mar,

day = "26",

doi = "10.1159/000545118",

language = "English",

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Cudizio, L, James, S, Maruthur, NM, Ng, SM, Lyons, S, Araszkiewicz, A, Gomber, A, Snoek, F, Toft, E, Weissberg-Benchell, J & de Beaufort, C 2025, 'Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers', Hormone Research in Paediatrics, pp. 1-13. https://doi.org/10.1159/000545118

TY - JOUR

T1 - Transition between Pediatric and Adult Diabetes Healthcare Services

T2 - An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers

AU - Cudizio, Laura

AU - James, Steven

AU - Maruthur, Nisa M

AU - Ng, Sze May

AU - Lyons, Sarah

AU - Araszkiewicz, Aleksandra

AU - Gomber, Apoorva

AU - Snoek, Frank

AU - Toft, Eva

AU - Weissberg-Benchell, Jill

AU - de Beaufort, Carine

PY - 2025/3/26

Y1 - 2025/3/26

N2 - INTRODUCTION: Young adults with diabetes face many challenges during emerging adulthood. Our study aimed to identify experiences and perceptions of people with diabetes (PwD) (aged 14-25 years) and their carers, around transition planning, and the actual transfer from pediatric to adult diabetes healthcare services.METHODS: Data were collected via an online global survey (seven language options), broadly advertised by the scientific societies ISPAD, EASD, patient advocates, team members and partners, via newsletters, websites, e-mails, and social media.RESULTS: There were 146 respondents from 29 countries. Of these, 90 (61.6%) were PwD age 18.5 (±3.6 years), diagnosed at 9.0 (±4.4 years), and 56 (38.3%) carers. Respondents receiving care in pediatric units (vs. adult) (58.2%) had higher care satisfaction and more frequent appointments (p < 0.05); 65.1% of respondents reported a fixed transfer age (≥18 years). Overall, 45.2% detailed transfer-related concerns; 44.3% felt their psychosocial needs were adequately addressed, 24.7% felt unprepared for areas of self-management. Combined pediatric and adult diabetes clinics (56.2%), and psychologist support (50.7%) were most desired.CONCLUSION: Findings highlight the urgent need to improve the transition process. A joint ISPAD, EASD, and ADA consensus report is in preparation.

AB - INTRODUCTION: Young adults with diabetes face many challenges during emerging adulthood. Our study aimed to identify experiences and perceptions of people with diabetes (PwD) (aged 14-25 years) and their carers, around transition planning, and the actual transfer from pediatric to adult diabetes healthcare services.METHODS: Data were collected via an online global survey (seven language options), broadly advertised by the scientific societies ISPAD, EASD, patient advocates, team members and partners, via newsletters, websites, e-mails, and social media.RESULTS: There were 146 respondents from 29 countries. Of these, 90 (61.6%) were PwD age 18.5 (±3.6 years), diagnosed at 9.0 (±4.4 years), and 56 (38.3%) carers. Respondents receiving care in pediatric units (vs. adult) (58.2%) had higher care satisfaction and more frequent appointments (p < 0.05); 65.1% of respondents reported a fixed transfer age (≥18 years). Overall, 45.2% detailed transfer-related concerns; 44.3% felt their psychosocial needs were adequately addressed, 24.7% felt unprepared for areas of self-management. Combined pediatric and adult diabetes clinics (56.2%), and psychologist support (50.7%) were most desired.CONCLUSION: Findings highlight the urgent need to improve the transition process. A joint ISPAD, EASD, and ADA consensus report is in preparation.

KW - Adolescents

KW - Emerging adults

KW - Low and middle income

KW - Transition

KW - Type 1 diabetes

KW - Young adults

UR - https://research.edgehill.ac.uk/en/publications/aac11f82-9683-4d44-b061-4e8c38abdf25

U2 - 10.1159/000545118

DO - 10.1159/000545118

M3 - Article (journal)

C2 - 40139169

SN - 1663-2818

SP - 1

EP - 13

JO - Hormone Research in Paediatrics

JF - Hormone Research in Paediatrics

ER -

Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers

Abstract

UN SDGs

Keywords

Access to Document

Other files and links

Fingerprint

Development of an international transition diabetes pathway-consensus from ISPAD ADA and EASD

Cite this

Transition between Pediatric and Adult Diabetes Healthcare Services: An Online Global Survey of Experiences and Perceptions of Young People with Diabetes and Their Carers

Abstract

UN SDGs

Keywords

Access to Document

Other files and links

Fingerprint

Projects

Development of an international transition diabetes pathway-consensus from ISPAD ADA and EASD

Cite this