Integrated Brain Health Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital, One Bowdoin Square, Boston, MA, USA.
Department of Psychiatry, Harvard Medical School, Boston, MA, USA.
Ann Behav Med. 2021 Feb 12;55(1):77-81. doi: 10.1093/abm/kaaa030.
Neurofibromatosis (NF) is a rare genetic disorder associated with substantial deficits in quality of life (QoL). We have previously shown that in this population the Relaxation Response Resiliency Program for NF (3RP-NF) delivered via live videoconferencing is associated with sustained improvement in QoL from baseline through 6-month follow-up over and above an attention placebo control..
To examine between- and within-group changes in QoL domains from baseline to 1-year follow-up and 6-month to 1-year follow-up.
We enrolled and randomized 63 adults with NF. Of these, 52 completed the 6-month follow-up and 53 completed 1-year follow-up. We assessed QoL with the World Health Organization Quality of Life-Brief.
Participation in the 3RP-NF was associated with sustained improvement from baseline to 1 year in physical health QoL (12.68; 95% confidence interval [CI]: 1.76 to 23.59; p =.024) and social relations QoL (16.81; 95% CI: 3.03 to 30.59; p =.018) but not psychological and environmental QoL, over and above the control (between group changes). Participants in the 3RP-NF improved from baseline to 1 year in psychological (8.16; 95% CI: 1.17 to 15.14; p =.023) and social relations QoL (9.93; 95% CI: 1.10 to 18.77; p = .028; within-group changes). There were no other significant differences between or within groups from baseline/6 months to 1 year.
The live video 3RP-NF shows promise in improving QoL dimensions over the course of 1 year. Results should be replicated in a fully powered randomized controlled trial.
ClinicalTrials.gov NCT03406208.
神经纤维瘤病（NF）是一种罕见的遗传性疾病，与生活质量（QoL）的显著下降有关。我们之前的研究表明，在该人群中，通过实时视频会议提供的 NF 放松反应弹性计划（3RP-NF）与基线相比，在 6 个月的随访期间，在注意力安慰剂对照组之上，持续改善 QoL。
检查从基线到 1 年随访以及 6 个月到 1 年随访期间 QoL 领域的组间和组内变化。
我们招募并随机分配了 63 名 NF 成年人。其中 52 人完成了 6 个月的随访，53 人完成了 1 年的随访。我们使用世界卫生组织生活质量简表评估了 QoL。
参与 3RP-NF 与从基线到 1 年的身体健康 QoL（12.68；95%置信区间[CI]：1.76 至 23.59；p =.024）和社会关系 QoL（16.81；95%CI：3.03 至 30.59；p =.018）的持续改善相关，但与对照组相比，心理和环境 QoL 没有改善（组间变化）。3RP-NF 组的参与者从基线到 1 年在心理（8.16；95%CI：1.17 至 15.14；p =.023）和社会关系 QoL（9.93；95%CI：1.10 至 18.77；p =.028；组内变化）方面均有所改善。从基线/6 个月到 1 年，两组之间或两组内部均无其他显著差异。
实时视频 3RP-NF 在 1 年内改善 QoL 维度方面显示出了前景。结果应在一项完全有效的随机对照试验中得到复制。
ClinicalTrials.gov NCT03406208。
