European Survey on Adults with Type 1 Diabetes and their Caregivers: Insights into Personal Experience and Needs for Improving Diabetes Care.

IF 3.8 3区 医学 Q2 Medicine
Diabetes Therapy Pub Date : 2025-03-01 Epub Date: 2025-01-30 DOI:10.1007/s13300-024-01685-5
Alfred Penfornis, Su Down, Antoine Seignez, Alizé Vives, Mireille Bonnemaire, Bernhard Kulzer
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Abstract

Introduction: Type 1 diabetes (T1D) requires constant self-management and substantially impacts daily life. We surveyed the experiences/burdens of people with T1D (PWD) and their caregivers.

Methods: An online survey of PWD/caregivers (aged ≥ 18 years) living in five European countries was conducted from July to August 2021. The survey included questions on the impact of T1D on physical and mental abilities, the frequency of hypoglycemic and hyperglycemic episodes and the impact of T1D on the daily lives of PWD.

Results: Respondents included 458 PWD and 54 caregivers. The main impacts of T1D included fatigue (50% of PWD rated a high/very high impact), a hindrance to daily activities (43%), feeling different than others (42%), and anxiety (40%). The perceived impact of complication risk was significantly lower for PWD paying more attention to controlling their disease (p < 0.001). Most caregivers (80%) reported feeling more anxious than the PWD about their T1D complications. Hypoglycemia/hyperglycemia was a significant predictor of perceived distress owing to T1D. Most PWD (68%) would have liked more psychological support. Over half of respondents (PWD: 53%, caregivers: 56%) felt they had insufficient knowledge about T1D. Acceptance, positivity, and self-organization are the main strategies recommended by PWD/caregivers for living with T1D.

Conclusions: T1D remains a significant burden for PWD/caregivers, and more educational and psychological support for T1D management is required.

欧洲对成人1型糖尿病患者及其护理者的调查:对改善糖尿病护理的个人经验和需求的见解。
1型糖尿病(T1D)需要持续的自我管理,并严重影响日常生活。我们调查了T1D患者(PWD)及其照顾者的经历/负担。方法:于2021年7月至8月对居住在欧洲5个国家的PWD/护理人员(年龄≥18岁)进行在线调查。调查包括T1D对身心能力的影响、低血糖和高血糖发作的频率以及T1D对PWD患者日常生活的影响。结果:调查对象包括458名残疾患者和54名护理人员。T1D的主要影响包括疲劳(50%的PWD被评为高/非常高的影响),妨碍日常活动(43%),感觉与他人不同(42%)和焦虑(40%)。对于重视疾病控制的PWD患者,并发症风险的感知影响显著降低(p结论:T1D仍然是PWD/护理人员的重大负担,需要更多的教育和心理支持来管理T1D。
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来源期刊
Diabetes Therapy
Diabetes Therapy Medicine-Endocrinology, Diabetes and Metabolism
CiteScore
6.90
自引率
7.90%
发文量
130
审稿时长
6 weeks
期刊介绍: Diabetes Therapy is an international, peer reviewed, rapid-publication (peer review in 2 weeks, published 3–4 weeks from acceptance) journal dedicated to the publication of high-quality clinical (all phases), observational, real-world, and health outcomes research around the discovery, development, and use of therapeutics and interventions (including devices) across all areas of diabetes. Studies relating to diagnostics and diagnosis, pharmacoeconomics, public health, epidemiology, quality of life, and patient care, management, and education are also encouraged. The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Diabetes Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research.
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