Barak Sharon, Ackerman Laufer Shirley, Gudinsky Elyashiv Michal, Rubinstein-Shatz Sharon, Davidson Rama, Kaplan Tali
Department of Nursing, School of Health Sciences, Ariel University, Ariel, Israel.
Department of Pediatric Rehabilitation, The Edmond and Lily Safra Children's Hospital, Chaim Sheba Medical Center, Tel Hashomer, Israel.
PLoS One. 2025 Jan 14;20(1):e0317006. doi: 10.1371/journal.pone.0317006. eCollection 2025.
For individuals with Duchenne or Becker muscular dystrophy (DMD and BMD, respectively), transitioning to adulthood presents significant challenges. Although considerable attention has been given to facilitating medical transitions due to the complexity of these conditions, less focus has been placed on other aspects of the transition, such as achieving independence. This study assessed the transition needs of people with DMD or BMD, exploring various domains including health, education, employment, living arrangements, transportation, daily activities, and independent personal life. Men with DMD or BMD participated in this cross-sectional study. Transition to adulthood was assessed using Transition Readiness Assessment for Young Adults with DMD. The questionnaire evaluates transitions in health care, education and employment, housing and transportation, activities of daily living, and independent life and autonomy. Factors associated with and predicting transition to adulthood were evaluated using Spearman's correlations and multiple regression analysis. Forty-two people with DMD or BMD (mean age: 24.3±5.3) participated in this study. The transition domains in which most participants needed help were education and employment (52.5%) and activities of daily living (57.0%). Transition needs that stood out included palliative care (66.6%), employment and education support (76.1%), social worker consultation for housing assistance (76.1%), and assistive device consultation (64.2%). Mobility and breathing function did not correlate with transition level. Number of siblings positively correlated with and predicted most transition domains. Older age predicted only education and employment status. In conclusion, the analysis showed that the most problematic transition domains among people with DMD or BMD were activities of daily living and education and employment. In most transition domains, help needed did not decrease with age and was not affected by function. However, adolescents and adults with more siblings typically reported being more ready to transit to adult life.
对于患有杜氏或贝克型肌营养不良症（分别为DMD和BMD）的个体而言，向成年期过渡面临着重大挑战。尽管由于这些病症的复杂性，人们对促进医疗过渡给予了相当多的关注，但对过渡的其他方面，如实现独立，关注较少。本研究评估了DMD或BMD患者的过渡需求，探讨了包括健康、教育、就业、生活安排、交通、日常活动和独立个人生活等各个领域。患有DMD或BMD的男性参与了这项横断面研究。使用针对患有DMD的青年成人的过渡准备评估来评估向成年期的过渡。该问卷评估了医疗保健、教育和就业、住房和交通、日常生活活动以及独立生活和自主性方面的过渡情况。使用斯皮尔曼相关性和多元回归分析评估与向成年期过渡相关并预测该过渡的因素。42名患有DMD或BMD的患者（平均年龄：24.3±5.3）参与了本研究。大多数参与者需要帮助的过渡领域是教育和就业（52.5%）以及日常生活活动（57.0%）。突出的过渡需求包括姑息治疗（66.6%）、就业和教育支持（76.1%）、寻求社会工作者进行住房援助咨询（76.1%）以及辅助设备咨询（64.2%）。 mobility和呼吸功能与过渡水平无关。兄弟姐妹的数量与大多数过渡领域呈正相关并可预测这些领域。年龄较大仅能预测教育和就业状况。总之，分析表明，DMD或BMD患者中最成问题的过渡领域是日常生活活动以及教育和就业。在大多数过渡领域，所需帮助并未随年龄增长而减少，也不受功能影响。然而，兄弟姐妹较多的青少年和成年人通常表示更准备好过渡到成年生活。
