van der Holst Menno, Groot Jeroen, Steenbeek Duco, Pondaag Willem, Nelissen Rob Ghh, Vliet Vlieland Thea Pm
a Department of Orthopaedics, Rehabilitation and Physical Therapy , Leiden University Medical Center , Leiden , The Netherlands.
b Rijnlands Rehabilitation Center , Leiden , The Netherlands.
Disabil Rehabil. 2018 Dec;40(26):3147-3155. doi: 10.1080/09638288.2017.1380717. Epub 2017 Sep 24.
To examine the impact of neonatal brachial plexus palsy (NBPP) on societal participation of adolescents and adults.
This cross-sectional study was conducted among patients with NBPP, aged ≥16 years, who had visited our NBPP clinic. Patients completed questions on the influence of NBPP on their choices regarding education/work and their work-performance, the Impact on Participation/Autonomy questionnaire and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P). In addition, health-related quality of life (HRQoL) was assessed.
Seventy-five patients participated (median age 20, inter quartile range 17-27). Twenty were full-time students, 28 students with a job, 21 employed, two unemployed, and four work-disabled. Sixty-six patients had had a job at some stage. Patients' overall HRQoL was comparable to the general population. 27/75 patients reported that NBPP had affected their choices regarding education and 26/75 those regarding work. 33/66 reported impact on their work performance. On the Impact on Participation/Autonomy questionnaire, 80% (49/61) reported restrictions in the work-and-education domain, 74% in social-relations and 67% in autonomy-outdoors. 37/61 reported participation restrictions on the USER-P.
Although their overall HRQoL was not impaired, a substantial proportion of adolescent/adult patients reported that NBPP had an impact on choices regarding education and profession, as well as on work-performance. Restrictions in participation, especially in work and education were also reported. Guiding patients in making choices on education and work at an early stage and providing tailored physical as well as psychosocial care may prevent or address restrictions, which may improve participation. Implications for Rehabilitation Adolescent and adult patients with neonatal brachial plexus palsy perceive restrictions in societal participation, especially regarding the work-and-education domain. All patients with neonatal brachial plexus palsy may perceive restrictions in societal participation regardless of lesion severity, treatment history and side of the lesion. Adolescents and adults with neonatal brachial plexus palsy report that their choices regarding education and work, as well as their work-performance are influenced by their neonatal brachial plexus palsy. Patients with neonatal brachial plexus palsy should be followed throughout their life in order to provide them with appropriate information and treatment when health- or participation-related issues arise. Rehabilitation treatment is the best option to address all of the aforementioned issues, as surgical options in adolescents and adults are limited.
探讨新生儿臂丛神经麻痹（NBPP）对青少年及成人社会参与度的影响。
本横断面研究在年龄≥16岁且曾就诊于我院NBPP门诊的患者中开展。患者完成了关于NBPP对其教育/工作选择及工作表现的影响、参与/自主影响问卷以及乌得勒支康复-参与评估量表（USER-P）的相关问题。此外，还评估了健康相关生活质量（HRQoL）。
75名患者参与研究（中位年龄20岁，四分位间距17 - 27岁）。其中20名是全日制学生，28名是有工作的学生，21名已就业，2名失业，4名因工作能力受限。66名患者在某个阶段曾有工作。患者的总体HRQoL与一般人群相当。27/75的患者报告NBPP影响了他们的教育选择，26/75的患者报告影响了工作选择。33/66的患者报告对其工作表现有影响。在参与/自主影响问卷中，80%（49/61）的患者报告在工作和教育领域存在限制，74%在社会关系方面存在限制，67%在户外自主方面存在限制。37/61的患者报告在USER-P上存在参与限制。
尽管青少年/成人患者的总体HRQoL未受损，但相当一部分患者报告NBPP对教育和职业选择以及工作表现有影响。也有报告称在参与方面存在限制，尤其是在工作和教育方面。在早期指导患者进行教育和工作选择，并提供针对性的身体及心理社会护理，可能预防或解决这些限制，从而改善参与度。康复治疗的意义 新生儿臂丛神经麻痹的青少年及成人患者意识到社会参与存在限制，尤其是在工作和教育领域。所有新生儿臂丛神经麻痹患者，无论损伤严重程度、治疗史及损伤部位如何，都可能意识到社会参与存在限制。新生儿臂丛神经麻痹的青少年及成人报告称，他们的教育和工作选择以及工作表现受到新生儿臂丛神经麻痹的影响。应终生随访新生儿臂丛神经麻痹患者，以便在出现与健康或参与相关问题时为他们提供适当的信息和治疗。康复治疗是解决上述所有问题的最佳选择，因为青少年和成人的手术选择有限。
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