Resilience in patients and family caregivers living with congenital disorders of glycosylation (CDG): a quantitative study using the brief resilience coping scale (BRCS)

Abstract Background Patients and family caregivers living with Congenital Disorders of Glycosylation (CDG) experience a heavy burden, which can impact their resiliency and quality of life. The study’s purpose was to measure the resilience levels of patients and family caregivers living with CDG usin...

وصف كامل

التفاصيل البيبلوغرافية
الحاوية / القاعدة:	Orphanet Journal of Rare Diseases
المؤلفون الرئيسيون:	Joana Poejo, Ana Isabel Gomes, Pedro Granjo, Vanessa dos Reis Ferreira
التنسيق:	مقال
اللغة:	الإنجليزية
منشور في:	BMC 2024-03-01
الموضوعات:	Resilience Congenital disorders of glycosylation (CDG) Rare diseases Brief resilience coping scale (BRCS) Mental health
الوصول للمادة أونلاين:	https://doi.org/10.1186/s13023-024-03043-x

مواد مشابهة

Congenital disorders of glycosylation (CDG): state of the art in 2022
حسب: Rita Francisco, وآخرون
منشور في: (2023-10-01)

Mapping the diagnostic odyssey of congenital disorders of glycosylation (CDG): insights from the community
حسب: Pedro Granjo, وآخرون
منشور في: (2024-11-01)

Zebrafish models for congenital disorders of glycosylation (CDG): a systematic review
حسب: N. Gandoy-Fieiras, وآخرون
منشور في: (2025-09-01)

In vitro cell model to dilucidate the underlying molecular mechanism associated with ophthalmic manifestation of congenital disorders of glycosylation: studying an ALG2-CDG patient
حسب: Marisa Angelica Cubilla, وآخرون
منشور في: (2025-10-01)

The efficacy of high pressure liquid chromatography (HPLC) in detecting congenital glycosylation disorders (CDG)
حسب: Ozgen Ozge, وآخرون
منشور في: (2024-11-01)

Case Report: DPM1-CDG: Novel Variant with Severe Phenotype and Literature Review
حسب: Hanna Lausmann, وآخرون
منشور في: (2022-07-01)

Measuring Caribbean stress and resilient coping: Psychometric properties of the PSS-10 and BRCS in a multi-country study during the COVID-19 pandemic
حسب: Michael H. Campbell, وآخرون
منشور في: (2024-01-01)

Congenital disorders of glycosylation: narration of a story through its patents
حسب: Maria Monticelli, وآخرون
منشور في: (2023-08-01)

Clinical and Molecular Characterization of ALG1-CDG
حسب: Radhika Dhamija, وآخرون
منشور في: (2016-04-01)

ALG1-CDG Caused by Non-functional Alternative Splicing Involving a Novel Pathogenic Complex Allele
حسب: Carlos Alberto González-Domínguez, وآخرون
منشور في: (2021-09-01)

Hypoglycemia in CDG patients due to PMM2 mutations: Follow up on hyperinsulinemic patients
حسب: Hossein Moravej, وآخرون
منشور في: (2020-01-01)

Immunopathology in PMM2-CDG: Defective glycosylation impact in the TNFα -TNFR1 signalling pathway
حسب: Carlota Pascoal, وآخرون
منشور في: (2025-09-01)

Psychometric properties of the German version of the brief resilience scale in persons with mental disorders
حسب: Jan Broll, وآخرون
منشور في: (2024-09-01)

<i>N</i>-Glycoprofiling of SLC35A2-CDG: Patient with a Novel Hemizygous Variant
حسب: Rebeka Kodríková, وآخرون
منشور في: (2023-02-01)

Mannose phosphate isomerase gene mutation leads to a congenital disorder of glycosylation: A rare case report and literature review
حسب: Siliang Lu, وآخرون
منشور في: (2023-04-01)

PIGN c.776T>C (p.Phe259Ser) variant present in trans with a pathogenic variant for PIGN-congenital disorder of glycosylation: Bella-Noah syndrome
حسب: Lyvia Neves Rebello Alves, وآخرون
منشور في: (2024-03-01)

Resilience And Coping: The Chicken and The Egg Paradox
حسب: N. El Ouni, وآخرون
منشور في: (2022-06-01)

The difference between the Connor–Davidson Resilience Scale and the Brief Resilience Scale when assessing resilience: confirmatory factor analysis and predictive effects
حسب: Yun-Ci Ye, وآخرون
منشور في: (2022-01-01)

Normal transferrin glycosylation does not rule out severe ALG1 deficiency
حسب: Inez Bosnyak, وآخرون
منشور في: (2024-05-01)

Resilience and coping strategies coping strategies in primary school teachers
حسب: Magdalena Boczkowska
منشور في: (2022-12-01)

Evaluation of Patients Diagnosed with Congenital Glycosylation Defects: A Rainbow of Inherited Metabolic Disorders
حسب: Sebile Kılavuz, وآخرون
منشور في: (2023-09-01)

Patient reported outcomes for phosphomannomutase 2 congenital disorder of glycosylation (PMM2-CDG): listening to what matters for the patients and health professionals
حسب: C. Pascoal, وآخرون
منشور في: (2022-10-01)

ALG12‐CDG: An unusual patient without intellectual disability and facial dysmorphism, and with a novel variant
حسب: María Eugenia de laMorena‐Barrio, وآخرون
منشور في: (2020-08-01)

Editorial: New insights into stress coping and resilience
حسب: Chong Chen, وآخرون
منشور في: (2023-07-01)

Revisiting the immunopathology of congenital disorders of glycosylation: an updated review
حسب: Carlota Pascoal, وآخرون
منشور في: (2024-03-01)

Brief resilience interventions for mental health among college students: Randomized controlled trial
حسب: Shabnam Kadian, وآخرون
منشور في: (2022-01-01)

Predictive Roles of Psychological Resilience and Coping Skills on Social Media Addiction
حسب: Seda Donat Bacıoğlu, وآخرون
منشور في: (2022-12-01)

Workshops on Trauma and Loss, Coping and Resilience, to Support Afghani Refugee Women Living in Limbo in Greece
حسب: Jane Shackman, وآخرون
منشور في: (2023-01-01)

Insights into ALG3-CDG: A case study combining glycan profiling and genetic analysis
حسب: Rebeka Kodríková, وآخرون
منشور في: (2025-12-01)

Successful heart transplantation in an infant with phosphoglucomutase 1 deficiency (PGM1‐CDG)
حسب: Ruqaiah Altassan, وآخرون
منشور في: (2023-03-01)

A Systematic Review of Studies Using the Brief COPE: Religious Coping in Factor Analyses
حسب: Christian U. Krägeloh
منشور في: (2011-07-01)

Glycosphingolipid synthesis is impaired in SLC35A2-CDG and improves with galactose supplementation
حسب: Andrea Jáñez Pedrayes, وآخرون
منشور في: (2025-06-01)

Stroke-Like Episodes in PMM2-CDG: When the Lack of Other Evidence Is the Only Evidence
حسب: Mercedes Serrano, وآخرون
منشور في: (2021-10-01)

WHAT COPING STRATEGIES ARE USED FOR ATHLETES OF MMA MORE RESILIENT TO STRESS?
حسب: Isabella Caroline Belem, وآخرون
منشور في: (2017-10-01)

Psychometric properties of the Brief-COPE for the evaluation of coping strategies in the Chilean population
حسب: Felipe E. García, وآخرون
منشور في: (2018-08-01)

The impact of coping and resilience on anxiety among older Australians
حسب: Wendy Wen Li, وآخرون
منشور في: (2017-12-01)

Psychological Resilience and Stress Coping Styles in Migraine Patients
حسب: Kurtses Gürsoy B, وآخرون
منشور في: (2023-01-01)

Effect of emotional intelligence and resilience on trauma coping among university students
حسب: Asanka Dilan Nayana Bulathwatta, وآخرون
منشور في: (2016-09-01)

Factor Structure and Psychometric Properties of Brief COPE in Russian Schoolteachers
حسب: Anna Pavlova, وآخرون
منشور في: (2022-08-01)

Stress, resilience, and coping in COVID-19 patients and non-COVID-19 people
حسب: Arvind Kakulte, وآخرون
منشور في: (2023-01-01)