Alfred Penfornis, Su Down, Antoine Seignez, Alizé Vives, Mireille Bonnemaire, Bernhard Kulzer
{"title":"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。","authors":"Alfred Penfornis, Su Down, Antoine Seignez, Alizé Vives, Mireille Bonnemaire, Bernhard Kulzer","doi":"10.1007/s13300-024-01685-5","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>T1D remains a significant burden for PWD/caregivers, and more educational and psychological support for T1D management is required.</p>","PeriodicalId":11192,"journal":{"name":"Diabetes Therapy","volume":" ","pages":"471-484"},"PeriodicalIF":3.8000,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11867988/pdf/","citationCount":"0","resultStr":"{\"title\":\"European Survey on Adults with Type 1 Diabetes and their Caregivers: Insights into Personal Experience and Needs for Improving Diabetes Care.\",\"authors\":\"Alfred Penfornis, Su Down, Antoine Seignez, Alizé Vives, Mireille Bonnemaire, Bernhard Kulzer\",\"doi\":\"10.1007/s13300-024-01685-5\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>T1D remains a significant burden for PWD/caregivers, and more educational and psychological support for T1D management is required.</p>\",\"PeriodicalId\":11192,\"journal\":{\"name\":\"Diabetes Therapy\",\"volume\":\" \",\"pages\":\"471-484\"},\"PeriodicalIF\":3.8000,\"publicationDate\":\"2025-03-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11867988/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Diabetes Therapy\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s13300-024-01685-5\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/1/30 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"Medicine\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Diabetes Therapy","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s13300-024-01685-5","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/30 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"Medicine","Score":null,"Total":0}
European Survey on Adults with Type 1 Diabetes and their Caregivers: Insights into Personal Experience and Needs for Improving Diabetes Care.
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.
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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