TY - JOUR T1 - Influence of Learning Disabilities on the Tumour Predisposition Syndrome NF1 – Survey from Adult Patients' Perspective JF - Anticancer Research JO - Anticancer Res SP - 3675 LP - 3681 VL - 34 IS - 7 AU - SOFIA GRANSTRÖM AU - REINHARD E. FRIEDRICH AU - ANNA KATHARINA LANGENBRUCH AU - MATTHIAS AUGUSTIN AU - VICTOR-FELIX MAUTNER Y1 - 2014/07/01 UR - http://ar.iiarjournals.org/content/34/7/3675.abstract N2 - Aim: To analyze psychosocial burdens associated with neurofibromatosis type-1 (NF1) phenotype – visible symptoms, medical complications, learning disabilities (LD) – from patients' perspective with focus on LD. Patients and Methods: A survey of 228 adult patients with NF1 was carried-out. Symptoms to estimate disease severity and visibility, and learning disability were assessed. Outcome parameters were social situation and psychosocial aspects. Results: Social situation and psychosocial aspects differed depending on NF1 phenotype. Patients with LD (n=55) were less frequently in a partnership (p=0.005) or had children (p=0.015) than those without (n=132). They also reported a higher frequency of depression (p=0.019) and sensitivity to stress (p<0.001) and more uncertainty regarding NF1-associated symptoms. These differences were significant when adjusting for disease severity and self-perceived disease visibility. Conclusion: Beside the psychosocial needs of patients with LD with NF1, medical management of this sub-group should include doctor–patient communication in easy language to compensate for patients' lack of knowledge about symptoms associated with cancer. ER -