Literature Review to Guide Development of a Peer-support Program for Young Adults Living with Cystic Fibrosis

Rachel Conrad, MD

Brigham and Women’s Hospital
Literature Review to Guide Development of a Peer-support Program for Young Adults Living with Cystic Fibrosis

Scientific Abstract

Background: During the past decade, young adults living with cystic fibrosis have experienced significant gain in life expectancy due to the development of novel therapeutic agents, most recently triple combination therapy. There is evidence of significant sequelae of the medical trauma associated with cystic fibrosis, adverse cognitive effects of anticholinergic medications, loss of psychosocial developmental milestones, and limited educational and employment opportunities due to their long-standing medical illness. Many young adults living with cystic fibrosis continue to suffer from higher rates of depression, anxiety, executive dysfunction, social isolation, and limited coping skills despite their improved health and life expectancy.

Methods: This literature review will inform the development of a clinical program to improve the functioning and well-being of young adults living with cystic fibrosis. We conducted a literature review to explore clinical interventions to support survivorship, post-traumatic growth, and resilience among transitional-age youth and young adults. We reviewed peer-support interventions for transition-age youth with trauma and medical illness, including cystic fibrosis, diabetes, and cancer.

Results: Acceptance and Commitment Therapy for Cystic Fibrosis is one example of a unique psychotherapeutic curriculum developed specifically for patients living with cystic fibrosis, which takes a values-based approach to living with a chronic illness. Other potentially useful models include peer-support from the fields of psycho-social oncology and palliative care and mental resilience training. The tenants of the interventions that will inform our program are (1) promoting resilience (2) building coping skills (3) trauma-informed care (4) post-traumatic growth and (5) grit.

Conclusions: Young adults living with cystic fibrosis are facing a unique set of challenges in gaining the skills to effectively navigate the challenges of entering an often unanticipated adulthood. Peer support and skills-based interventions may have utility in improving their quality of life and functioning.

research Areas

Authors

Rachel Conrad, MD, Dorothea Iannuzzi, PhD, Glynis McGowan, MD, Nomi Levy-Carrick, MD, Carolyn Snell, PhD