Marfan syndrome in adolescence: adolescents’ perspectives on (physical) functioning, disability, contextual factors and support needs

Warnink‐Kavelaars, Jessica; Beelen, Anita; Goedhart, Tine M. H. J.; Koning, Lisanne E. de; Nollet, Frans; Alsem, Mattijs; Menke, Leonie A.; Engelbert, Raoul

doi:10.1007/s00431-019-03469-7

Cited by 21 publications

(52 citation statements)

References 37 publications

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“…Living with a genetic condition can lead to feelings of stigmatization and emotional pain due to being different from peers, in addition to social, emotional, and financial stress [ 7 - 9 ]. In particular, young adults with chronic illnesses often experience more social isolation compared to their peers [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

“…In particular, young adults with chronic illnesses often experience more social isolation compared to their peers [ 7 ]. Young people with Marfan syndrome have reported “difficulties in keeping up with peers” in school, sports, activities, relationships, and work because of their condition [ 9 ]. Time-consuming medical visits and treatments, fatigue, pain, and fear of injury were contributing factors to the difficulties associated with “keeping up with peers” [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

“…Young people with Marfan syndrome have reported “difficulties in keeping up with peers” in school, sports, activities, relationships, and work because of their condition [ 9 ]. Time-consuming medical visits and treatments, fatigue, pain, and fear of injury were contributing factors to the difficulties associated with “keeping up with peers” [ 9 ]. Young people with Marfan syndrome also feel different from their peers due to their appearance, fatigue, pain, and disability.…”

Section: Introductionmentioning

confidence: 99%

“…Many individuals with connective tissue disorders have to limit physical activities and sports to prevent life-threatening injuries [ 1 - 5 ]. Some adolescents and young adults experienced bullying, and individuals with lower self-esteem were more likely to avoid social activities, such as going to the beach or parties [ 9 ]. Previous research has found that having Marfan syndrome can lead to a lower quality of life mentally, due to emotional and psychological impairment [ 8 - 10 ].…”

Section: Introductionmentioning

confidence: 99%

“…Previous research has provided evidence that communicating about one’s condition can help individuals cope with their diagnosis, increase knowledge about their condition, and increase involvement in their own medical care [ 9 , 21 - 23 ]. Individuals with chronic illnesses who use social media to share and exchange information and experiences report an “enhanced feeling of self-worth and validation, often inhibited by living with chronic illness” [ 23 ].…”

Section: Introductionmentioning

confidence: 99%

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Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study

Kelleher¹,

Giampietro²,

Moreno³

2020

JMIR Pediatr Parent

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Background Young people with genetic conditions often face challenges coping with their health condition. It can be difficult for them to meet someone with a similar condition, which is important for reinforcement of chronic illness management recommendations. Social media is used by 97% of young people in the United States and may provide those with these disorders a space for emotional expression and support. However, there is a scarcity of literature related to the use of social media among adolescents with genetic conditions as an indicator of their perception regarding their own condition. Objective The purpose of this pilot study was to obtain preliminary data to assess and understand social media use by young people with connective tissue disorders and determine whether they use social media to connect with patients with similar conditions or whether they would be interested in doing so. Methods We undertook a pilot study of selected connective tissue disorders occurring in young people between the ages of 11 and 25 years, including Marfan syndrome; Ehlers-Danlos syndrome subtypes classical, classical-like, cardiac-valvular, and vascular; Beals congenital contractual arachnodactyly; and Alport hereditary nephritis. The study took place within one pediatric clinical system. Patients were identified through electronic medical record search and International Classification of Diseases, Ninth Revision, coding at a Midwest university–based clinical system. Study subjects completed a short survey describing their experiences with their connective tissue disorders, their means of self-expression, their existing network of persons to communicate with, and their use of social media. Data analysis included nominal and bivariate regressions to compare social media use in relation to age. Results Our 31 participants (42% response rate) were 55% female (17/31) and their average age was 18 years (SD 5). All participants used social media and there were no statistically significant differences between social media use and age. The majority of participants (25/30, 83%) reported that they never used social media to discuss their condition (P=.09), and only 17% (5/30) knew someone online with a similar condition (P=.50). Most participants (19/30, 63%) said they would communicate with someone with a similar disorder (P=.64). Conclusions We found that young individuals with connective tissue disorders use at least one type of social media. A majority did not use social media to discuss their condition or know someone online with a similar condition. However, many persons were interested in finding others similarly affected. Social media could serve as a platform for young people with connective tissue disorders to connect. Peer support is important in disease management and adolescent development. Future studies should aim at understanding social media use among young people with connective tissue disorders and helping them connect with other people who have similar conditions.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study

Kelleher¹,

Giampietro²,

Moreno³

2020

JMIR Pediatr Parent

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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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Parenting a child with Marfan syndrome: Distress and everyday problems

Warnink‐Kavelaars

Oers

Haverman

et al. 2020

American J of Med Genetics Pt A

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Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.

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Marfan syndrome in adolescence: adolescents’ perspectives on (physical) functioning, disability, contextual factors and support needs

Cited by 21 publications

References 37 publications

Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study

Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study

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

Parenting a child with Marfan syndrome: Distress and everyday problems

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