Humanistic Burden of Informal Caregivers of Children and Young Adults With Newly Diagnosed Type 1 Diabetes (T1D): A Systematic Literature Review (SLR)


Allen V1, Bascle S2, Cherkas A3, Kasireddy E4, Min R4, Pushkarna D4, Pourrahmat MM4, Mahieu A5
1Sanofi, Bridgewater, NJ, USA, 2Sanofi, Paris, France, 3Sanofi-Aventis Deutschland GmbH., Frankfurt am Main, Germany, 4Evidinno Outcomes Research Inc., Vancouver, BC, Canada, 5Sanofi, Gentilly, France

Presentation Documents

OBJECTIVES: To describe the humanistic burden of informal caregivers of children and young adults with newly diagnosed T1D.

METHODS: A SLR was conducted in MEDLINE®, Embase, and PsycInfo (search date: December 7, 2021) to identify clinical and observational studies assessing the humanistic burden experienced by informal caregivers (i.e., persons who provide unpaid care) of children and young adults aged 6 to 21 who were diagnosed with T1D within three months.

RESULTS: Four prospective cohort studies and one randomized controlled trial (RCT) were included. Caregiver sample size ranged from 59 to 191. Duration of T1D was 2 to 6 weeks. Among parents of children aged ≤11 years, mothers had a moderate posttraumatic stress disorder symptom severity (mean score: 11.9; standard deviation [SD]: 7.4). Fathers experienced mild severity (8.4; SD: 6.2; p < 0.001; Posttraumatic Diagnostic Scale). Mothers experienced clinically significant symptoms (defined as score >5) of anxiety (mean score: 7.5), social dysfunction (7.5), and somatic symptoms (5.1; General Health Questionnaire [GHQ]-28). Fathers showed clinically significant anxiety (5.5) and social dysfunction (7.7) only. Results from the RCT indicated a mean hypoglycemia fear score of 46.6 out of 108 at diagnosis and 34.9 after 14 weeks, with a higher score indicating greater fear (Hypoglycemia Fear Survey-Parents). Parents of children aged >11 years experienced clinically significant social dysfunction (mean score for mothers/fathers: 7.6/7.1) and anxiety (mothers: 5.4; GHQ-28). Parents experienced moderate to extreme diabetes-specific stress (defined as score ≥5; mean score: 6.3; SD: 1.9) at diagnosis, and no to moderate stress (4.5; SD: 2.1) at 3 months.

CONCLUSIONS: This SLR highlights parents of children and young adults with newly diagnosed T1D experience caregiver burden, with a greater burden among mothers than fathers. Due to the paucity of evidence, further studies are warranted to better understand the humanistic burden among this group of caregivers.

Conference/Value in Health Info

2022-11, ISPOR Europe 2022, Vienna, Austria

Value in Health, Volume 25, Issue 12S (December 2022)




Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes


No Additional Disease & Conditions/Specialized Treatment Areas

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