RT Journal Article
SR Electronic
T1 Influence of Learning Disabilities on the Tumour Predisposition Syndrome NF1 – Survey from Adult Patients' Perspective
JF Anticancer Research
JO Anticancer Res
FD International Institute of Anticancer Research
SP 3675
OP 3681
VO 34
IS 7
A1 SOFIA GRANSTRÖM
A1 REINHARD E. FRIEDRICH
A1 ANNA KATHARINA LANGENBRUCH
A1 MATTHIAS AUGUSTIN
A1 VICTOR-FELIX MAUTNER
YR 2014
UL http://ar.iiarjournals.org/content/34/7/3675.abstract
AB 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.