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  • 1
    Online Resource
    Online Resource
    Marfan syndrome in adolescence: adolescents’ perspectives on (physical) functioning, disability, contextual factors and support needs
    Springer Science and Business Media LLC ; 2019
    In:  European Journal of Pediatrics Vol. 178, No. 12 ( 2019-12), p. 1883-1892
    Details
    In: European Journal of Pediatrics, Springer Science and Business Media LLC, Vol. 178, No. 12 ( 2019-12), p. 1883-1892
    Abstract: Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes. Conclusion : Adolescents with Marfan syndrome perceived limitations and restrictions in (physical) functioning. They perceived problems in keeping up with peers and perceived to differ from peers due to their appearance and disability. This warrants awareness and tailored physical, psychosocial, educational and environmental support programmes to improve (physical) functioning and empowerment of adolescents with Marfan syndrome. What is known: • Marfan syndrome is a hereditary connective tissue disorder. • Marfan syndrome affects multiple systems. What is new: • Adolescents with Marfan syndrome perceive (1) problems in keeping up with peers in school, sports, leisure, friendships/relationships and work (2) to differ from peers due to their appearance and disability. • An adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and contextual factors.
    Type of Medium: Online Resource
    ISSN: 0340-6199 , 1432-1076
    URL: Article
    DOI: 10.1007/s00431-019-03469-7
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2019
    detail.hit.zdb_id: 2647723-3
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  • 2
    Online Resource
    Online Resource
    Marfan syndrome in childhood: parents’ perspectives of the impact on daily functioning of children, parents and family; a qualitative study
    Springer Science and Business Media LLC ; 2019
    In:  BMC Pediatrics Vol. 19, No. 1 ( 2019-12)
    Details
    In: BMC Pediatrics, Springer Science and Business Media LLC, Vol. 19, No. 1 ( 2019-12)
    Type of Medium: Online Resource
    ISSN: 1471-2431
    URL: Article
    DOI: 10.1186/s12887-019-1612-6
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2019
    detail.hit.zdb_id: 2041342-7
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  • 3
    Online Resource
    Online Resource
    Effects of Upper-Extremity Surgery on Manual Performance of Children and Adolescents with Cerebral Palsy : A Multidisciplinary Approach Using Shared Decision-Making
    Ovid Technologies (Wolters Kluwer Health) ; 2018
    In:  Journal of Bone and Joint Surgery Vol. 100, No. 16 ( 2018-8-15), p. 1416-1422
    Details
    In: Journal of Bone and Joint Surgery, Ovid Technologies (Wolters Kluwer Health), Vol. 100, No. 16 ( 2018-8-15), p. 1416-1422
    Abstract: Little is known about the effects of upper-extremity surgery on the manual performance of children and adolescents with cerebral palsy (CP). This clinical cohort study describes our experience with patient selection based on multidisciplinary assessment and shared decision-making and the effects of upper-extremity surgery on manual performance and patient-relevant outcomes. Methods: All patients (up to 20 years of age) with CP referred to our multidisciplinary team for evaluation for upper-extremity surgery between July 2011 and May 2017 were included. Suitability for upper-extremity surgery was assessed with comprehensive, multidisciplinary screening, and the decision to proceed with surgery was made together with the patient. Individual patient-relevant goals were identified with the Canadian Occupational Performance Measure (COPM); perceived independence in performing bimanual activities at home was assessed with the ABILHAND-Kids tool, and perceived quality of use of the affected hand during daily activities was assessed with a visual analog scale (VAS). The quality of use of the affected hand during bimanual performance was measured with the Assisting Hand Assessment (AHA), and gross manual dexterity was evaluated with the Box and Block Test (BBT). All baseline assessments were repeated at an average of 9 months after the surgery. Results: Of 66 patients assessed by the multidisciplinary upper-extremity-surgery team, 44 were considered eligible for upper-extremity surgery. Of these patients, 39 (mean age and standard deviation [SD] , 14.9 ± 2.10 years, 87% with unilateral CP, and 72% at Manual Ability Classification System [MACS] level II) underwent upper-extremity surgery and were evaluated in the pre-post study. All outcomes improved significantly after upper-extremity surgery, with average improvements of 3.1 ± 1.6 points in the COPM-Performance (COPM-P) score (p 〈 0.001), 3.3 ± 2.1 points in the COPM-Satisfaction (COPM-S) score (p 〈 0.001), 1.5 ± 1.2 logits in the ABILHAND score (p 〈 0.001), 2.4 ± 1.9 cm in the VAS score (p 〈 0.001), 6.7 ± 4.2 units in the AHA score (p 〈 0.001), and 2.2 ± 5.0 blocks/minute on the BBT (p = 0.021). The improvement in the COPM-P, COPM-S, ABILHAND, VAS, AHA, and BBT scores was clinically meaningful in 80%, 77%, 55%, 62%, 71%, and 31% of the patients, respectively. Conclusions: Careful assessment of eligibility for upper-extremity surgery, based on multidisciplinary screening and shared decision-making, resulted in a clinically relevant improvement in patient-specific functional and/or cosmetic goals and manual performance after upper-extremity surgery in most patients with CP. Level of Evidence: Therapeutic Level IV . See Instructions for Authors for a complete description of levels of evidence.
    Type of Medium: Online Resource
    ISSN: 0021-9355 , 1535-1386
    URL: Article
    DOI: 10.2106/JBJS.17.01382
    RVK:
    XA 52200.A
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2018
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