The JUBILE cohort: Quality of life after more than 40 years with type 1 diabetes

• Published in: Diabetic medicine Vol. 38; no. 9; pp. e14460 - n/a
• Main Authors: Altman, Jean‐Jacques, Niarra, Ralph, Balkau, Beverley, Vincent‐Cassy, Christophe
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.09.2021; Wiley; John Wiley and Sons Inc
• Subjects: Adolescent; Adult; Aged; Blood glucose; Blood Glucose - metabolism; Child; Children; Demography; Diabetes; Diabetes mellitus (insulin dependent); Diabetes Mellitus, Type 1 - blood; Diabetes Mellitus, Type 1 - drug therapy; Diabetes Mellitus, Type 1 - psychology; Endocrinology and metabolism; Female; Follow-Up Studies; Glycated Hemoglobin A - metabolism; Human health and pathology; Humans; Hypoglycemic Agents - therapeutic use; Insulin; Insulin - therapeutic use; Insulin Infusion Systems; Life Sciences; lifestyle; long duration diabetes; Male; Middle Aged; Patients; Prognosis; Quality of Life; Questionnaires; Research:Educational and Psychological Aspects; Retinopathy; Retrospective Studies; type 1 diabetes; Young Adult; type 1 diabetes; quality of life; long duration diabetes; lifestyle
• ISSN: 0742-3071; 1464-5491
• DOI: 10.1111/dme.14460

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.