Hypermobile Ehlers-Danlos syndrome: Caregiver–child concordance across challenges, readiness to change, and coping.

Bieniak, Keely H; Koven, Marissa L.; Bedree, Helen; Tinkle, Brad T.; Tran, Susan T.

doi:10.1037/cpp0000411

Cited by 3 publications

(3 citation statements)

References 38 publications

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“…GJH/EDS > control 4. GJH/EDS > control Mu, 2019 [ 78 ] Fatigue, pain and stress incontinence* 6–16 Negatively correlated with quality of life in children with GJH Pacey, 2015b [ 90 ] Readiness to self-manage symptoms, depression, functional disability and challenges regarding EDS* 8–18 Readiness to self-manage symptoms positively correlated with familial support and longer time since diagnosis, pain and physical symptoms negatively correlated with quality of life in children with EDS Bieniak, 2022 [ 21 ] Functional disability, mental health and social support 8–18 Functional disability was related to more mental health disorders regardless of social support Bieniak, 2022b [ 22 ] Pain, number of physical symptoms, fatigue and mental health disorder 8–18 Correlated with FD in children with GJH Tran, 2020 [ 111 ] 1. Functional performance 2.…”

Section: Resultsmentioning

confidence: 99%

“…Seven studies focused on quality of life and found it was lower in youth with GJH in comparison to healthy controls. Pain along with number of symptoms, fatigue, and stress incontinence predicted quality of life, dysfunction, anxiety, and depression in the GJH group [ 21 , 22 , 50 , 78 , 90 ]. Children and adolescents with EDS reported their greatest challenges were managing their physical symptoms, not being able to do things their peers do and feeling left out [ 21 , 111 ].…”

Section: Resultsmentioning

confidence: 99%

“…Pain along with number of symptoms, fatigue, and stress incontinence predicted quality of life, dysfunction, anxiety, and depression in the GJH group [ 21 , 22 , 50 , 78 , 90 ]. Children and adolescents with EDS reported their greatest challenges were managing their physical symptoms, not being able to do things their peers do and feeling left out [ 21 , 111 ]. Social support did not mitigate the negative impact EDS had on quality of life or mental health [ 22 ].…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Hypermobility prevalence, measurements, and outcomes in childhood, adolescence, and emerging adulthood: a systematic review

Blajwajs,

Williams,

Timmons

et al. 2023

Rheumatol Int

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General Joint Hypermobility (GJH) is a common condition found in 2–57% of the population. Of those with GJH, 10% suffer from accompanying physical and/or psychological symptoms. While the understanding of GJH in the general population is unfolding, its implication in a cohort of children, adolescents and young adults are not yet understood. This systematic review explored GJH’s prevalence, tools to measure it, its physical and psychosocial symptoms, with a special interest in aesthetic sports. The CINHAL, MEDLINE, PsycINFO, SPORTDiscus and Scopus databases were searched for relevant studies. Inclusion criteria were (1) Age range of 5–24; (2) Participants had GJH; (3) A measurement for GJH; (4) Studies written in English language. Study screening for title, abstract and full text (when needed) and quality assessment were performed by two independent individuals. 107 studies were included in this review and were thematically grouped into six clusters expressing different foci: (1) GJH’s Core Characteristics; (2) Orthopedic; (3) Physical Other; (4) Psychosocial; (5) Treatment and (6) Aesthetic Sports. The review revealed a growing interest in GJH in this cohort in the last decade, especially regarding non-musculoskeletal physical implications and psychosocial aspects. Prevalence varied between different ethnic groups and as a parameter of age, gender and measurement. The most widespread tool to measure GJH was the Beighton scale, with a cut-off varying between 4 and 7. Children show fewer, but similar GJH implication to those in the general population, however, more research on the topic is warranted, especially regarding psychosocial aspects and treatment.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Hypermobility prevalence, measurements, and outcomes in childhood, adolescence, and emerging adulthood: a systematic review

Blajwajs,

Williams,

Timmons

et al. 2023

Rheumatol Int

View full text Add to dashboard Cite

show abstract

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

France,

Uny,

Turley

et al. 2023

Cochrane Database of Systematic Reviews

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The role of functional disability and social support in psychological outcomes for individuals with pediatric hypermobile ehlers–danlos syndrome

Bieniak

Tinkle

Tran

2022

J Child Health Care

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Hypermobile Ehlers–Danlos syndrome (hEDS) includes physical symptoms of chronic pain, fatigue, gastrointestinal dysfunction, and joint subluxations/dislocations. This study aims to fill a research gap regarding the psychosocial well-being in pediatric hEDS by assessing relationships between functional disability, social support, and mental health. Increased functional disability is hypothesized to be associated with increased mental health challenges, specifically anxiety and depression, and general social support is hypothesized to moderate this relationship, such that higher perceived social support will mitigate the negative psychological impacts of functional disability. Gender’s influence on mental health in pediatric hEDS is also explored. Thirty-four youth with pediatric hEDS recruited from a United States Midwest multidisciplinary genetics clinic completed self-report questionnaires. Results demonstrate associations between functional disability and mental health, and social support and mental health independently; however, moderation was not found. Functional disability and social support each have a unique influence on the mental health of children with pediatric hEDS and should each receive clinical attention. Exploratory analyses into the influence of gender provide a groundwork for future studies.

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Hypermobile Ehlers-Danlos syndrome: Caregiver–child concordance across challenges, readiness to change, and coping.

Cited by 3 publications

References 38 publications

Hypermobility prevalence, measurements, and outcomes in childhood, adolescence, and emerging adulthood: a systematic review

Hypermobility prevalence, measurements, and outcomes in childhood, adolescence, and emerging adulthood: a systematic review

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

The role of functional disability and social support in psychological outcomes for individuals with pediatric hypermobile ehlers–danlos syndrome

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