Resiliency Training in Adolescents with NF1 and NF2: A Randomized Controlled Trial via Secure Live Video to Improve Emotional, Social, and Physical Health
Abstract
Rationale and Objective: Advances in genetics have led to the early diagnoses of NF1 and NF2, resulting in increased prevalence in adolescence. Even for healthy youth, adolescence is a socially and emotionally challenging phase of life in which individuals focus on modulating emotions, negotiating relationships, developing a sense of self, and mastering academics. NF-related symptoms and/or fears about symptom development can drastically affect development and adjustment at a critical time of life. Not surprising, research shows that adolescents with NF, regardless of NF type, have lower quality of life (QoL), more symptoms of depression and anxiety, higher levels of stress associated with coping with NF symptoms, lower levels of self-esteem, and more pain as compared with general population norms. Our recent research has also uncovered that adolescents with NF have substantially higher rates of suicidal ideations compared to those without NF. Further, there is no association between severity of NF and emotional functioning, suggesting that psychosocial factors are as important as or more important than severity of disease. However, current models of care for NF do not prioritize assessing and addressing these psychosocial factors. This represents an unexplored opportunity to teach youth with NF resiliency skills at a critical social developmental time in their lives. Investment in effective coping skills training has the potential to substantially improve psychological, social, and physical health and set adolescents on a successful and well-adjusted life path while waiting for a cure. The objective of this study is to test within a scientifically sound, randomized controlled trial (RCT) whether a mind body resiliency program that addresses the needs of youth with NF, Resilient Youth for NF (RY-NF), improves four aspects of QoL (physical health, psychological health, social relationships, and environment), pain, pain intensity, and other psychosocial factors (e.g., depression, anxiety) much more than a health education control (HE-NF) that provides only educational information without teaching coping skills. Both programs will be delivered via videoconferencing with Vidyo to reduce the burden of traveling to clinic and to ensure that the intervention is accessible to English-speaking adolescents from across the world. Vidyo is a HIPPA-approved, secure video web platform that is currently used to deliver clinical care at MGH. Vidyo is easy to use and attractive to adolescents who prefer technology to in-person visits. Adolescents will not know which is the intervention and which is the control. We have already preliminarily tested the intervention in a subset of adolescents with NF1 and NF2 (N=51) and found that patients are very interested in participating in the study and report high satisfaction after participation. Adolescents in both groups improved, but those in the RY-NF active program improved significantly more than those in the control. Improvements were also clinically meaningful, providing strong support for the proposed fully powered RCT. Applicability and Impact of Research: Because this research addresses coping with NF and not underlining disease mechanisms, it can be helpful to all adolescents with NF, regardless of NF type. Because the intervention is comprehensible at a third-grade reading level; the intervention groups are small; and skills are learned and practiced within each group session; youth with learning and cognitive disabilities will also benefit from it. The Vidyo web platform is user-friendly and has received high patient satisfaction ratings at MGH for the past several years from patients with various mental and cognitive concerns, including adolescents. The intervention has the potential to change the manner in which care for NF adolescents is delivered by addressing the person (e.g., coping, QoL) and not only the body (e.g., tumor). The RY-NF is economical (only eigh
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Jul 16, 2019
- Source ID
- W81XWH1910184
Entities
People
- Ana-Maria Vranceanu
Organizations
- Massachusetts General Hospital
- United States Army