Life Challenges and Quality of Life of People Living With Coeliac Disease: Time of Diagnosis Matters DOI Creative Commons
Nanette Stroebele‐Benschop,

Christine J. Rau,

Anastasia Dieze

и другие.

Journal of Human Nutrition and Dietetics, Год журнала: 2024, Номер 38(1)

Опубликована: Дек. 24, 2024

Abstract Background Previous studies have examined the quality of life patients with coeliac disease. There is a lack understanding about potential changes in emotional responses and challenges after diagnosis. This exploratory study aimed to evaluate impact, people living disease Germany. Methods An online survey was conducted among assess difficulties implementing gluten‐free diet daily activities, including food shopping preparation, eating away from home, as well additional costs time money. Furthermore, questionnaire assessed diagnosis, emotions felt diagnosis today, compliance regarding sociodemographic data. Participants were recruited 2022 via social media, newsletters websites. Out 1286 participants who had taken part survey, 766 met inclusion criteria included data analysis. Results The majority respondents (aged 18–83 years) female (93%) almost 50% diagnosed more than 5 years ago. Negative emotion ratings related associated age at passed since While high 89% strictly adhering diet, reported mainly situations involving such out‐of‐home consumption restaurants, work while travelling. These appear persist over time. Conclusions are negatively impacting individuals disease, particularly first months Particularly adolescents young adults be impacted. emphasises need improve all impacted areas through better guidance improved training health professionals providers outside home psychological counselling year help their life.

Язык: Английский

Predictive factors of health related quality of life in children and adolescents with celiac disease: An Italian multicenter study on behalf of the SIGENP DOI
Marco Crocco, Federica Malerba, Angela Calvi

и другие.

Digestive and Liver Disease, Год журнала: 2025, Номер unknown

Опубликована: Янв. 1, 2025

Язык: Английский

Процитировано

1

Gluten‐free diet management and well‐being in children with celiac disease: A qualitative study DOI Creative Commons

Heather Maddison‐Roberts,

Christina Jones, Rose‐Marie Satherley

и другие.

Pediatric Allergy and Immunology, Год журнала: 2025, Номер 36(3)

Опубликована: Март 1, 2025

Abstract Background Management of celiac disease (CD) requires adherence to a strict gluten‐free diet (GFD). However, little is known about how children with CD manage the GFD. This qualitative study sought gain comprehensive understanding experience and navigate GFD, focusing on their dietary preferences, perceptions, challenges, as well impact these experiences. Methods Fifteen CD, aged 8–13 years, who had been following GFD for minimum one year, were interviewed parents management Reflexive thematic analysis was used analyze data. Results Children described range strategies managing While some adopt problem‐focused such planning ahead carrying foods person, others exhibit heightened anxiety persistent doubts, indicating need tailored healthcare support. Importantly, uncovers socioecological influences, including social roles, communication patterns, environmental factors, which shape children's beliefs coping strategies. Conclusions The underscores importance monitoring gluten‐related distress, beliefs, behaviors in broader context lives. To better support holistic may target well‐being alongside management.

Язык: Английский

Процитировано

0

Hub-and-Spoke regional system supported by telehealth for managing coeliac disease in Liguria: a mixed-methods survey followed by an observational pilot study DOI Creative Commons

Marco Crocco,

Federica Malerba, Paolo Gandullia

и другие.

BMC Health Services Research, Год журнала: 2025, Номер 25(1)

Опубликована: Март 18, 2025

Due to the need reorganize care network for national screening mandated by law, a new healthcare model was required management of coeliac disease. The hub-and-spoke is organizational system, here we describe its application (supported telehealth), in pediatric disease (CD) Liguria. results pilot phase are presented and system's strengths weaknesses discussed. A mixed-methods survey followed an observational study performed. multiphase approach used including preparation setting, operative planning application. involves single primary center. reduction families' expenditure environmental impact assessed using Viamichelin calculator. regional meeting (specifically developed this study) needs analysis highlighted priority have efficient, up date homogeneous assistance throughout network. diagnostic therapeutic pathway (PDTC) working group. project involved 986 Ligurian families allowed 90% distance traveled residing within center's catchment area, saving €177 113 kg CO2 on average per family year. Gaslini Diffuso system managing CD Liguria exemplifies commitment enhancing efficiency patient care, reducing cost both system.

Язык: Английский

Процитировано

0

Quality of Life in Children with Celiac Disease: An Observational Study DOI Open Access

Anna Rozensztrauch,

Paulina Mostyńska

Nutrients, Год журнала: 2025, Номер 17(6), С. 1085 - 1085

Опубликована: Март 20, 2025

Background/Objectives: Celiac disease (CD) is one of the most common chronic autoimmune disorders affecting children worldwide. The aim to explore significance quality life (QOL) research in pediatric CD, highlighting importance assessing both physical and psychosocial aspects well-being. Materials Methods: study used a self-administered questionnaire, which consisted questions on sociodemographic clinical characteristics, as well general assessment QOL by using validated PedsQL™ 4.0. Results: Dietary restrictions were associated with social challenges, reported 43% respondents who indicated their child had experienced exclusion or distress during family gatherings, while 48% encountered difficulties school setting. overall score mean 68.9 (SD = 15.00), median 67.4, ranged from 41.3 100.0, reflecting individual variations perceived Age significant factor influencing children’s interactions experiences within educational settings, likely due increased academic demands, pressures, developmental changes. Conclusions: suggests that significantly influences functioning life, its impact emotional, social, domains comparatively lower.

Язык: Английский

Процитировано

0

A systematic review of guidelines on screening for celiac disease in children with thyroid disease and vice versa DOI Creative Commons

Talia D’Ambrosio,

Silvia Bianchin,

Roberto Gastaldi

и другие.

Frontiers in Pediatrics, Год журнала: 2025, Номер 13

Опубликована: Март 31, 2025

Autoimmune thyroid diseases (ATD) are the most prevalent autoimmune disorders associated with celiac disease (CD). Both conditions can often be detected through serological screening in asymptomatic patients over several years. Various guidelines for (TD) available children CD and vice versa. We conducted a systematic review to identify recent relevant guidelines, comparing their recommendations analyze key differences suggesting practical clinical approach. Out of 1,294 articles reviewed, we identified 20 published between January 2013 2024. These primarily from gastroenterological organizations Europe North America, recommend different timings methods co-occurrence these diseases, both at diagnosis during follow up. Some only follow-up without routine screening. There is limited consensus on TD [using thyroid-stimulating hormone test (TSH)] newly diagnosed CD, even less agreement anti-transglutaminase antibodies (tTG) immunoglobulin A (IgA) total IgA] TD. No standardized procedures exist managing isolated low tTG human leukocyte antigen (HLA) genotyping rarely recommended as first- line method. Over past decade, there has been growing recognition importance identifying who could benefit early treatment, absence symptoms. However, international still show lack regarding frequently notable use HLA testing protocols.

Язык: Английский

Процитировано

0

A Child with Crohn’s Disease: Problems and Stress Level of Parents–Caregivers—A Cross-Sectional Study DOI Creative Commons
Małgorzata Pasek,

Monika Stoietskyi,

Anna Goździalska

и другие.

Nursing Reports, Год журнала: 2024, Номер 14(1), С. 444 - 454

Опубликована: Фев. 16, 2024

Crohn’s disease (CD) is a chronic inflammatory bowel disease. The perception of the disease, its troublesome symptoms and highly involved treatment mean that living with CD requires not only affected child having to learn cope it, but also their parents. aim study was examine problems levels stress in parents–caregivers children CD. cross-sectional conducted using diagnostic survey method. An original questionnaire used assess socio-demographic situation caring for CD, standardised PSS-10 added. group consisted 60 parents who accompanied during hospitalization. surveyed caregivers found it difficult maintain specialised diet deal need hospitalization use medications. Access necessary knowledge about posed least difficulty everyday life vast majority (50, 83.34%) felt high level related and, simultaneously, lack acceptance child’s (39, 65%). age respondents did have statistically significant effect on occurrence functioning. by informal reduced level. Parents could count support from relatives but, unfortunately, institutional properly provided.

Язык: Английский

Процитировано

0

SARS-CoV-2 Vaccination Coverage in Italian Children with Celiac Disease DOI Open Access

Carlotta Pepino,

Federica Malerba, Valentina Biagioli

и другие.

Journal of Clinical Medicine, Год журнала: 2024, Номер 13(19), С. 5851 - 5851

Опубликована: Сен. 30, 2024

Background: Celiac disease (CD) is the most common multisystemic autoimmune disorder affecting pediatric population. However, little data available regarding SARS-CoV-2 vaccination coverage in patients with CD. This study aims to evaluate adherence national recommendations for children and adolescents CD its variation over time. Methods: We retrospectively analyzed medical charts electronic registry records of aged 0–19 years diagnosed a tertiary center. The was evaluated according age groups (young children, adolescents), considering patients’ eligibility at different times. Results: Among 172 enrolled, 44.8% received least one dose vaccine, showing no significant differences compared Italian population similar age. Vaccination demonstrated progressive reduction after an initial peak (up 65.5% December 2021) concomitant gradual extension vaccinable falling infections. Histological diagnosis presence other associated diseases were higher levels vaccination. Conclusions: Adherence young very low, while it better diseases. Vaccine hesitancy remains concern, particularly among those using biopsy-sparing approach. Hesitancy increased during pandemic period, suggesting need ongoing efforts improve recommendations.

Язык: Английский

Процитировано

0

Life Challenges and Quality of Life of People Living With Coeliac Disease: Time of Diagnosis Matters DOI Creative Commons
Nanette Stroebele‐Benschop,

Christine J. Rau,

Anastasia Dieze

и другие.

Journal of Human Nutrition and Dietetics, Год журнала: 2024, Номер 38(1)

Опубликована: Дек. 24, 2024

Abstract Background Previous studies have examined the quality of life patients with coeliac disease. There is a lack understanding about potential changes in emotional responses and challenges after diagnosis. This exploratory study aimed to evaluate impact, people living disease Germany. Methods An online survey was conducted among assess difficulties implementing gluten‐free diet daily activities, including food shopping preparation, eating away from home, as well additional costs time money. Furthermore, questionnaire assessed diagnosis, emotions felt diagnosis today, compliance regarding sociodemographic data. Participants were recruited 2022 via social media, newsletters websites. Out 1286 participants who had taken part survey, 766 met inclusion criteria included data analysis. Results The majority respondents (aged 18–83 years) female (93%) almost 50% diagnosed more than 5 years ago. Negative emotion ratings related associated age at passed since While high 89% strictly adhering diet, reported mainly situations involving such out‐of‐home consumption restaurants, work while travelling. These appear persist over time. Conclusions are negatively impacting individuals disease, particularly first months Particularly adolescents young adults be impacted. emphasises need improve all impacted areas through better guidance improved training health professionals providers outside home psychological counselling year help their life.

Язык: Английский

Процитировано

0