Psoriasis: The Skin I'm In. Development of a behaviour change tool to improve the care and lives of people with psoriasis.

BACKGROUND: Psoriasis is a long-term skin condition associated with considerable life impairment. Extensive literature regarding the needs of patients with psoriasis is not translated into clinical practice. AIM: To explore and communicate the experience of living with psoriasis and interacting with healthcare professionals (HCPs). METHODS: In total, 21 patients attending a tertiary adult psoriasis service were interviewed individually. Interviews were recorded and transcribed, then the transcripts were examined and thematic analyses and qualitative content analysis performed. The results were communicated via a short film. RESULTS: Three key themes were identified: comparison with cancer, misalignment of response with need and fear of social exclusion. Cancer comparison subthemes included poorer services, lack of awareness and trivialization of psoriasis compared with cancer. Misalignment subthemes related to lack of knowledge and inappropriate response of HCPs and society towards psoriasis. Fear of social exclusion subthemes included erroneous belief of psoriasis being contagious and the expectation of rejection. Consequent emotions of fear, shame and anxiety resulted in avoidant behaviours, which perpetuated social exclusion. Participants valued active listening, shared decision-making and communication of hope regarding treatment by HCPs. CONCLUSION: Despite extensive research into psoriasis and the availability of effective treatment for many patients, people with psoriasis live unnecessarily impaired lives and have unsatisfactory healthcare experiences. Storytelling techniques provide a method to communicate scientific information in a way that may drive change in delivery of healthcare and improve the lives of patients.

An exploratory study using framework analysis to investigate health-seeking behaviour in patients with psoriasis.

BACKGROUND: Psoriasis is a long-term inflammatory skin disorder, with negative effects on employment, relationships and social function, frequently causing reduced quality of life. People with psoriasis often present to secondary care late into their condition but the reasons for this are unknown. OBJECTIVES: To examine the patient pathway, health-seeking behaviour and drivers for referral to secondary care in patients with psoriasis. METHODS: Sixteen patients with mild-to-severe psoriasis, newly referred to secondary care participated in a semi-structured interview. Scripts were analysed by a thematic framework. RESULTS: The median duration of time living with psoriasis was 15 years at referral. Drivers of secondary care referral included rapid deterioration or extremis, development of comorbidities, knowledge of treatment options, and influence of partners and friends. Reasons for late presentation to secondary care include familial experience of psoriasis, lack of follow-up after the initiation of treatments, beliefs that psoriasis is incurable and must be tolerated, and that psoriasis is not life threatening and therefore not worthy of medical help and difficulty in obtaining a secondary care referral. A common pathway from seeking help at psoriasis onset, evolving into the development of delayed health seeking later in the pathway, was identified. CONCLUSIONS: Identifying the causes of delay in presentation to secondary care and effective treatment ascertains key areas to target. Health seeking early in the disease pathway provides a 'window of opportunity' for intervention, which may enable people with psoriasis to obtain early, effective treatment and achieve their full life potential.

Core beliefs and psychological distress in patients with psoriasis and atopic eczema attending secondary care: the role of schemas in chronic skin disease.

BACKGROUND: The role of ingrained cognitive and emotional patterns (schemas) in patients with psoriasis and eczema has not previously been investigated. High levels of psychiatric morbidity and psychological distress observed in these populations suggest the presence of maladaptive schemas and therefore a possible target for future successful psychological intervention. OBJECTIVES: To investigate the presence of early maladaptive schemas (EMS) in patients with psoriasis and eczema and to explore their links with psychological distress. METHODS: A sample of 185 adults (psoriasis n = 55, atopic eczema n = 54, chronic disease control n = 23, normal control n = 53) completed validated, self-administered questionnaires. RESULTS: Differences were found between dermatology patients and control groups. Patients with psoriasis differed on seven EMS from the normal control group: emotional deprivation (P = 0·011), social isolation (P < 0·001), defectiveness (P < 0·001), failure (P < 0·001), vulnerability to harm (P < 0·001), subjugation (P = 0·009) and emotional inhibition (P = 0·002). They differed from the chronic disease group on vulnerability to harm (P = 0·002) only. Patients with eczema differed from the normal control group on eight EMS: emotional deprivation (P < 0·001), social isolation (P < 0·001), defectiveness (P < 0·001), failure (P < 0·001), dependence (P = 0·010), vulnerability to harm (P = 0·002), subjugation (P = 0·006) and insufficient self-control (P = 0·010). EMS were strongly positively related to psychological distress experienced by dermatology patients. Hierarchical regressions demonstrated two schemas, vulnerability to harm (P < 0·001) and defectiveness (P = 0·029), to be predictive of anxiety, and social isolation (P = 0·012) and vulnerability to harm (P = 0·018) to be predictive of depression, irrespective of age and years of coping for dermatology patients. CONCLUSIONS: The findings have important theoretical and clinical implications for psychological management of patients with psoriasis and eczema. Treatment protocols may benefit by targeting schemas. Further studies are needed to investigate the benefits of schema-focused therapy in patients with skin disease.