Premium
The JUBILE cohort: Quality of life after more than 40 years with type 1 diabetes
Author(s) -
Altman JeanJacques,
Niarra Ralph,
Balkau Beverley,
VincentCassy Christophe
Publication year - 2021
Publication title -
diabetic medicine
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.474
H-Index - 145
eISSN - 1464-5491
pISSN - 0742-3071
DOI - 10.1111/dme.14460
Subject(s) - medicine , diabetes mellitus , quality of life (healthcare) , cohort , population , type 2 diabetes , diabetic retinopathy , type 1 diabetes , incidence (geometry) , gerontology , insulin , retinopathy , disease , pediatrics , demography , endocrinology , environmental health , nursing , physics , sociology , optics
Aim The incidence of type 1 diabetes is increasing, and more people are going to live many years with the disease. Quality of life might become the most challenging long‐term complication. The JUBILE study describes the quality of life of people living with type 1 diabetes for more than 40 years. Methods Patients were recruited from 35 French regional or university hospitals: patients and physicians completed questionnaires, validated by the Delphi method. From 1200 questionnaires circulated, 808 patients and their physicians returned questionnaires. Results The duration of type 1 diabetes was 49 ± 6 years (mean±SD), age at diagnosis 15 ± 10 years, HbA1c 7.4 ± 0.9% [58 ± 10 mmol/mol] and 52% were men. Macrovascular disease was present in 32%, 46% had no or only mild non proliferative retinopathy. Insulin pumps were used by 25% and insulin pen/syringe users injected 3.9 ± 2.1 times per day. Blood glucose was self monitored at least five times per day by 67% of patients. Men had 1.8 ± 1.2 children, women 1.4 ± 1.0. More than half (55%) of this population was working, 38% had a university degree. Patients still had a busy life, going out (59%), eating out (82%), playing sports (38%) and travelling (66%). No differences appeared based on age, duration of diabetes, demography or social features. Conclusions Living a long and pleasant life is possible with type 1 diabetes. Diabetes does not prevent people from having children, working at highly qualified jobs, travelling abroad: a message of hope that is comforting for patients, their family, relatives and the medical teams.