参加心理社会随机对照试验的神经纤维瘤病成人的基线特征。
Baseline characteristics of adults with neurofibromatosis enrolled on a psychosocial randomized controlled trial.
机构信息
Integrated Brain Health Clinical and Research Program, Massachusetts General Hospital, Boston, MA, USA.
Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, Boston, MA, USA.
出版信息
J Neurooncol. 2022 Sep;159(3):637-646. doi: 10.1007/s11060-022-04104-6. Epub 2022 Aug 4.
PURPOSE
Neurofibromatosis (NF) is an incurable genetic neurological condition. Psychosocial interventions that promote resiliency are a promising approach to address the high emotional distress and low quality of life (QoL) associated with NF. However, no studies have examined the psychosocial needs of treatment-seeking adults with NF. Our goal was to explore, using data from the largest efficacy trial of a psychosocial intervention for NF, differences in QoL, emotional distress, resiliency, and pain-related outcomes compared to other chronic medical populations and within subtypes (NF1, NF2, schwannomatosis; SCHW).
METHODS
Enrolled participants (N = 228) were geographically diverse adults with NF and elevated stress. We performed secondary analysis on baseline measures of QoL, emotional distress, resiliency, and pain-related outcomes. We reported descriptive statistics and normative comparisons to understand the psychosocial characteristics of the overall sample and performed between-group analyses to explore differences within NF type.
RESULTS
Our sample endorsed worse QoL, emotional distress, resilience, and pain-related outcomes than similar chronic illness populations. Within NF types, participants with NF1 reported lower QoL and resilience compared to those with NF2. Participants with SCHW reported higher pain intensity than those with NF1. Participants with SCHW reported higher pain interference and lower physical QoL compared to those with NF1 and NF2.
CONCLUSIONS
Our findings support the urgent need for psychosocial interventions targeting deficits in QoL, emotional distress, resilience, and pain-related outcomes in adults with NF. We recommend efforts to enhance sample diversity, prepare clinicians to provide high-levels of support, and attune skills training to each NF type.
TRIAL REGISTRATION
ClinicalTrials.gov NCT03406208; https://clinicaltrials.gov/ct2/show/NCT03406208 (Archived by WebCite at http://www.webcitation.org/72ZoTDQ6h ).
目的
神经纤维瘤病（NF）是一种无法治愈的遗传性神经疾病。促进适应力的心理社会干预是一种有前途的方法，可以解决与 NF 相关的高度情绪困扰和低生活质量（QoL）。然而，尚无研究探讨寻求治疗的 NF 成人的心理社会需求。我们的目标是使用 NF 最大的心理社会干预功效试验的数据，探讨与其他慢性医学人群以及在亚型（NF1、NF2、施万细胞瘤病；SCHW）内相比，QoL、情绪困扰、适应力和与疼痛相关的结果的差异。
方法
纳入的参与者（N=228）是具有 NF 和压力升高的地理上多样化的成年人。我们对 QoL、情绪困扰、适应力和与疼痛相关的结果的基线测量值进行了二次分析。我们报告了描述性统计数据和与标准的比较，以了解总体样本的心理社会特征，并进行了组间分析，以探讨 NF 类型内的差异。
结果
我们的样本报告的 QoL、情绪困扰、适应力和与疼痛相关的结果比类似的慢性疾病人群更差。在 NF 类型中，与 NF2 相比，NF1 患者的 QoL 和适应力较低。与 NF1 相比，SCHW 患者的疼痛强度更高。与 NF1 和 NF2 相比，SCHW 患者的疼痛干扰程度更高，身体 QoL 较低。
结论
我们的研究结果支持迫切需要针对 NF 成人的 QoL、情绪困扰、适应力和与疼痛相关的结果的心理社会干预措施。我们建议努力提高样本多样性，使临床医生做好提供高水平支持的准备，并使技能培训适应每种 NF 类型。
试验注册
ClinicalTrials.gov NCT03406208；https://clinicaltrials.gov/ct2/show/NCT03406208（由 WebCite 存档，http://www.webcitation.org/72ZoTDQ6h）。
Zotero 插件