title: Illness Perception and Psychological Distress in Persons with Porphyria Cutanea Tarda.
abstract: Porphyria cutanea tarda (PCT) requires long-term treatment and follow-up, although many patients experience life-long remission. The aim of this cross-sectional postal survey was to describe and investigate the association between illness perception, health complaints, self-reported symptoms and distress in persons with PCT. The participants perceived PCT as a chronic condition with high levels of personal and treatment control. Persons who reported active symptoms scored higher on perceived illness threat, total health complaints and psychological distress compared with those in remission or latent phases. However, a higher perception of illness threat and the total burden of health complaints were more closely associated with psychological distress than were perceived PCT symptoms activity. This has implications for clinical consultation; dermatologists should be attentive to symptoms activity, but also recognize that patients in remission with a high perceived illness threat and multiple health complaints might be especially vulnerable to psychological distress with regards to PCT.
authors.affiliation: Department of Global Health and Primary Health Care, University of Bergen P.b. 7804, 5020 Bergen, Norway. jan004@igs.uib.no, jacd@helse-bergen.no.
authors.forename: Janice
authors.initials: J
authors.lastname: Andersen
authors.forename: Karin
authors.initials: K
authors.lastname: Nordin
authors.forename: Sverre
authors.initials: S
authors.lastname: Sandberg
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009664:Norway; D017119:Porphyria Cutanea Tarda / Q000523:psychology*; D057566:Self Report; D013315:Stress, Psychological / Q000523:psychology*; D011795:Surveys and Questionnaires