NDLI: A skin disease, a blood disease or something in between? An exploratory focus group study of patients' experiences with porphyria cutanea tarda.

Content Provider	World Health Organization (WHO)-Global Index Medicus
Author	Andersen, J. Gjengedal, E. Sandberg, S. Råheim, M.
Description	Country affiliation: Norway Author Affiliation: Andersen J ( Laboratory for Clinical Biochemistry, Norwegian Porphyria Centre (NAPOS), Haukeland University Hospital, Bergen, Norway)
Abstract	BACKGROUND: Porphyria cutanea tarda (PCT) is characterized by fragile skin with blistering on sun-exposed areas. Symptoms typically develop in late adulthood and can be triggered by iron overload, alcohol intake, oestrogens and various liver diseases. Treatment consists of phlebotomy to reduce iron, or increasing urinary porphyrin excretion by administering chlorochin. To optimize patient care, health personnel need to understand the subjective experiences of PCT. OBJECTIVES: To explore the experiences of persons with PCT with regard to symptoms, treatment, follow-up and prevention of the disease. METHODS: Interpretive description was used as a qualitative approach. Twenty-one participants attended three focus groups. All participants had experienced PCT symptoms during the last 5 years. RESULTS: Participants' experiences varied from trivializing symptoms and fragile skin to what was described as a desperate situation, with huge blisters, skin falling off and feeling as if one was in a 'horror movie'. For some, itching was very troublesome, preventing sleep and delaying skin healing. In managing PCT a shift in focus from skin to blood was described. PCT was perceived as a chronic and systemic disease causing a range of health problems. Strategies for preventing symptoms ranged from doing nothing to frequent controls and check-ups. CONCLUSIONS: Participants had a systemic perception of PCT, and a tendency to attribute a range of health problems to the condition. This study adds insight into the experiences patients have with PCT.
File Format	HTM / HTML
ISSN	00070963
e-ISSN	13652133
DOI	10.1111/bjd.13198
Journal	British Journal of Dermatology
Issue Number	1
Volume Number	172
Language	English
Publisher	Wiley-Blackwell (on behalf of British Association of Dermatologists)
Publisher Date	2015-01-01
Publisher Place	Great Britain (UK)
Access Restriction	Open
Subject Keyword	Discipline Dermatology Porphyria Cutanea Tarda Psychology Attitude To Health Choice Behavior Genetic Testing Phlebotomy Prevention & Control Therapy Pruritus Risk Assessment Research Support, Non-u.s. Gov't
Content Type	Text
Resource Type	Article
Subject	Dermatology

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