Patient-Reported Experiences With Median Arcuate Ligament Syndrome: Resilience and Resources Required.
Patient-Reported Experiences With Median Arcuate Ligament Syndrome: Resilience and Resources Required.
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DOI：
10.1037/cpp0000355
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发表时间：
2022-03
影响因子：
1.1
通讯作者：
Drossos, Tina
中科院分区：
文献类型：
--
作者：
Stiles-Shields, Colleen;Osos, Sylwia;Sunnquist, Madison L;Mak, Grace Zee;Skelly, Christopher L;Drossos, Tina
正中弓状韧带综合征（MALS）是一种通过手术治疗的血管疾病。肌萎缩侧索硬化症是一种排除性诊断，因此通常需要儿科患者在接受准确的诊断和治疗之前进行详尽的检查和潜在的误诊经历。当前混合方法研究的目的是评估儿童患者和家长报告的经验(a)应对和管理与MALS相关的症状和(b)儿科MALS的诊断、治疗和康复过程。9例术后儿童患者（年龄M = 20.11±3.59，手术时均<18岁）和6名家长参加半结构化焦点小组，完成关于其经历和当前功能的自我报告问卷。出现了四个主题：(a)肌萎缩侧索侧索症的影响（身体和心理），(b)不确定性和被误解的感觉，(c)广泛的医学测试，(d)心理健康影响，另外三个主题与具体查询（即赞赏、建议和跨学科治疗小组）有关。除了可变的长期身体影响外，患者及其父母报告的经历相当一致，这些主题的内容与自我报告的定量数据一致。目前的研究强调了有效诊断和干预儿科肌萎缩侧索硬化症似乎需要的复原力和资源。有必要增加对肌萎缩侧索硬化症的认识，包括一个跨学科的治疗团队，并长期随访小儿肌萎缩侧索硬化症患者。
Median arcuate ligament syndrome (MALS) is a vascular condition that is treated surgically. MALS is a diagnosis of exclusion and therefore often requires that pediatric patients undergo an exhaustive number of tests and potential experiences with misdiagnosis before receiving an accurate diagnosis and treatment. The purpose of the current mixed-methods study was to assess the pediatric patient- and parent-reported experience of (a) coping with and managing symptoms associated with MALS and (b) the diagnostic, treatment, and recovery process for pediatric MALS. Nine postsurgical pediatric patients (M age = 20.11 ± 3.59; all <18 at time of surgery) and 6 parents participated in semistructured focus groups and completed self-report questionnaires about their experiences and current functioning. Four themes emerged: (a) the impact of MALS (physical and psychosocial), (b) uncertainties and feeling misunderstood, (c) extensive medical tests, and (d) mental health impacts, with an additional three themes related to specific querying (i.e., appreciation, recommendations, and interdisciplinary treatment team). With the exception of variable long-term physical impacts, patients and their parents reported fairly consistent experiences, and the content of these themes was consistent with self-reported quantitative data. The current study highlights the resilience and resources seemingly required for effective diagnosis and intervention for pediatric MALS. The need for increased knowledge about MALS, the inclusion of an interdisciplinary treatment team, and long-term follow-up for pediatric patients with MALS are implicated.