Psoriasis care consumption and consequences of having psoriasis in everyday life

Abstract: This thesis concerns a research project about psoriasis care and conse¬quences of psoriasis in the county of Västerbotten in Northern Sweden. The overall aim of the thesis is to contribute to improvement of psoriasis care through increased knowledge of the use and accessibility of psoriasis care, and knowledge of impact of psoriasis on patients’ daily lives by describing and interpreting: (i) accessibility and use of psoriasis care, (ii) consequences of having psoriasis in everyday life, and (iii) dilemmas in psoriasis care and visions of future care among professionals, politicians and administrators.The theoretical framework in the psoriasis project was based on previous research, theories and concepts about priority setting, stigma, coping and qual¬ity of life. Parts of the framework were basis of the project plan and other parts were included in order to analyse the findings. Two different methodological approaches were used as complement to each other. The project started with a questionnaire to all known persons with psoriasis in Västerbotten with ques¬tions about socio-economic factors, psoriasis symptoms, psoriasis care, and quality of life. These formed the basis for two studies. The first focused on quality of life, and the other on gender differences in psoriasis care. Qualita¬tive research interviews were made with persons with psoriasis, and with ad¬ministrators, politicians and professionals. The interviews formed the basis for two studies focusing on consequences of psoriasis, and priorities and visions in psoriasis care, respectively. Findings from the studies are reported in four papers.Accessibility of psoriasis care influenced the use among persons with pso¬riasis. Use was also influenced by age, income, joint symptoms and quality of life. Men used psoriasis care more often than women. Both genders expected professional care and amelioration, while more women valued polite treat¬ment. Expectations were fulfilled apart from amelioration. Among decision makers, accessibility and issues on organisation and ethics involved priority dilemmas. The persons with psoriasis stated that visibility of both skin psoria¬sis and joint changes, as well as being stigmatised, was the worst with living with psoriasis. The visibility and stigmatisation were most difficult in younger ages. Some of those with both rashes and joint changes thus felt stigmatised in a twofold way. In order to deal with these difficulties, commonly used coping strategies were routinisation of both treatment and of adjustment to the stigma¬tising process, a strategy which could not be found in literature, and accep¬tance. These strategies developed with age. Those with large disease extent and joint symptoms run the highest risk of impaired health-related quality of life. Most of the interviewed participants, took power over their lives and by using coping strategies created an acceptable personal quality of life for them¬selves. Still they could not find anything positive with having psoriasis.In specialised care as well as local health care, special attention should be paid to gender differences and distance to treatment facilities, and handling of possible stigmatisation in patient care. This thesis suggests that the coping theories should be complemented with routinisation as a coping strategy for psoriasis patients. Also, more research on the usefulness of the letter of referral and its consequence on equality and fairness are suggested.