Alienation in adults with NF1 and parents of children with NF1: A mixed methods study on mental health and primary care experiences

This mixed methods study examined mental health concerns and alienation among U.S. adults with neurofibromatosis type 1 (NF1) and parents of children with NF1. Qualitative interviews with six adult patients and six parents revealed 14 mental health triggers related to NF1 symptoms and care. Alienation was identified as a focal response to triggers during thematic analysis, and participants shared desired resources to cope with alienation and navigate care. A follow-up survey with 313 participants confirmed these triggers were commonly experienced. Survey respondents facing more triggers experienced greater alienation (Pearson’s r = 0.513 for patients, r = 0.396 for parents, p < 0.0001) and lower flourishing (Pearson’s r = −0.378 for patients, r = −0.371 for parents, p < 0.0001). Multiple linear regression accounting for sociodemographics confirmed these relationships as significant ( p < 0.01). Targeting triggers of alienation requires greater development of educational, emotional, and social support resources; provider awareness and engagement in offering these supports; and promoting positive online content about living with NF1.