Workstream 3 () addresses objective 3 of the IMPACT programme: to learn from people with psoriasis about coping (self-management) strategies.
Workstream 3: relationship of studies 3.i and 3.ii to other IMPACT programme workstreams.
Publications relating to this section and workstream are listed in Publications and cited throughout this section.
Background
As described in Synopsis, psoriasis is a common, lifelong inflammatory skin disease. It is associated with high levels of physical and psychosocial disability2–4 and is incurable. Given that the majority of patients develop the first signs of psoriasis before 40 years of age, the disease can make significant demands throughout productive adult life.6 The long-term, visible and fluctuating nature of psoriasis means that its effects can be as disabling as, and possibly even more disabling than, other long-term conditions, with significant experiences of stigmatisation, low self-esteem and even suicidal thinking.7–9 The relationship between physical or clinical severity of psoriasis and the degree of psychosocial disability relating to the condition is complex. It is not unusual for individuals with psoriasis of very limited extent to have significant and disabling impairment to quality of life10 and health-care professionals often fail to detect psychological distress in patients.11
As outlined in earlier sections, there are a range of comorbidities associated with psoriasis. Of particular relevance to this chapter is the finding that people with psoriasis are more likely to have increased acquired risk of some comorbidities owing to higher rates of unhealthy lifestyle behaviours, including smoking, excess alcohol consumption, obesity and/or being sedentary (see Cardiovascular risk in patients with psoriasis). Although there is some evidence that weight loss, healthy diet and/or increasing physical activity can reduce psoriasis severity,32,33,106,108,109 the relationship between psychological distress and unhealthy lifestyle can be bidirectional, impeding people’s capacity to manage the challenges of making behavioural changes.
The majority of patients with psoriasis are managed in primary care; however, there is evidence that these patients may be managed inadequately or inappropriately in this setting.129,130 Surveys from patient organisations in both the UK and USA indicate that dissatisfaction with psoriasis care is widespread.12,131,132 A large survey from the Psoriasis Association in the UK reported that a quarter of respondents had not consulted a health-care professional about their psoriasis in the previous 2 years;12 in a more recent update, one-third of respondents reported having never consulted a doctor about psoriasis and another 19% had consulted a doctor about psoriasis no more than once per year.132 In addition, treatment adherence is low, with reported rates of adherence to recommended regimens being between 22% and 67%.133 Although some people have unanswered concerns about adverse treatment effects,134 others express their belief that they are not receiving effective treatments.133,134
This literature suggests that many people with psoriasis may be missing out on (and perhaps unaware of) recent developments in treatment options or may be self-managing their condition suboptimally. The NICE guideline for the assessment and management of psoriasis135 recommends that psoriasis is recognised and managed as a complex, long-term condition linked with physical and psychological comorbidities; however, evidence suggests that it may not currently be managed in this way. Against this backdrop, it was unknown how people living with psoriasis cope with and self-manage the condition, meaning in-depth perspectives from affected people were missing from the literature. The views of GPs about managing patients with psoriasis in primary care were also unknown.
Aim
The aim of workstream 3 was to explore the perspectives of people with psoriasis about effective coping responses and self-care strategies through:
In-depth qualitative interviews with people with psoriasis (study 3.i: main patient study).
An explicit aim of this work was to learn about the coping strategies used by individuals who were currently functioning well despite severe disease and how people seek or choose not to seek help from health-care professionals and services. See Nelson
et al.112 As an adjunct to this work, a brief subsidiary study (study 3.ii) aimed to gather the views of health-care professionals managing people with psoriasis.
Qualitative interviews with GPs about experiences of managing psoriasis in primary care (study 3.ii: adjunct GP study).
This study aimed to explore GP views and experiences of their own practice of psoriasis management. See Nelson
et al.111
Approval was obtained from the University of Manchester’s REC for the patient and GP studies (reference numbers 10325 and 11353, respectively) and from the Greater Manchester Primary Care Research Governance Partnership (ReGroup) for the GP study (reference number 2011/280).
Methods
Data collection and analysis (main patient study)
Given the evidence that people with psoriasis may disengage from health-care services for psoriasis management, the study sample was recruited from community sources (i.e. not through primary or secondary care health-care services) across Greater Manchester by distributing information through websites and in community locations such as libraries, places of religious worship, shops and community centres. Sampling was purposive for maximum variation on age, gender, ethnicity, socioeconomic background and self-identified severity of psoriasis including duration and treatment.
Data were gathered from participants in a location convenient to them. This qualitative study used face-to-face interviews to gather views about coping with psoriasis including experiences of consultations with practitioners. Ethics approval was provided by the university REC (reference number: 10325). In-depth, face-to-face, semistructured qualitative interviews were conducted using a topic guide developed from the existing psoriasis literature as well as the theoretical frameworks of illness beliefs136 and coping/appraisal.137 These theoretical approaches conceptualise coping as an evaluative process by which individuals appraise both the source of stress and the coping resources available to them. The appraisal process accounts for individual differences in response to similar levels of adversity. Participants were asked about physical, emotional and social effects of living with psoriasis and their coping strategies (both problem- and emotion-focused, including use of social support, self-care strategies, medication use and choices as well as use of health-care services). Interviews were audio-recorded with consent, transcribed verbatim and transferred to the NVivo computer package for qualitative data management.126 Data were analysed concurrently with data collection according to principles of framework analysis128 to code for salient themes and produce a thematic framework of key concepts using constant comparison techniques.138
Data collection and analysis (adjunct general practitioner study)
General practitioners in Greater Manchester primary care practices were invited by e-mail to take part in an interview and purposively sampled for diversity on gender, age, ethnicity and size of practice. A topic guide was developed from the relevant literature and used to guide interviews in which GPs were asked about how they managed patients with psoriasis in the primary care setting. Interviews were audio-recorded, transcribed verbatim and, as above, also analysed using principles of framework analysis and constant comparison to generate key concepts. The NICE guideline135 (which focuses on the importance of two main elements: the assessment and the management of psoriasis) was used to identify main themes about GPs’ attitudes to managing psoriasis.
Results
Response to advertising was rapid, with approximately 90 people with psoriasis expressing interest in being interviewed. Purposive sampling was used to select 29 people to take part in interviews, enabling achievement of a community sample of patients who were diverse in terms of age, gender, socioeconomic background, ethnicity, self-identified severity of psoriasis and duration and treatment of psoriasis.
In total, 14 GPs (a mixture of salaried, partner and trainee GPs) who were diverse in age and gender as well as in geographical location and practice size were interviewed for the practitioner study.
Findings (main patient study)
Participants described marked experiences of stress and distress in relation to living with psoriasis (including itching, flaking and painful skin, and lowered mood, self-confidence and self-image due to concerns about their appearance and feelings of low control over psoriasis symptoms). These demands were perceived to go unacknowledged in consultations with health-care professionals. Participants gave accounts of poor experiences in the management of psoriasis by health-care practitioners (such as perceived lack of expertise and a failure to recognise and manage psoriasis as a complex, long-term condition with appropriate monitoring, review and referral to specialist services). There were reports of coping with the demands of the condition against the perceived lack of support from services by disengaging from consulting about psoriasis or seeking alternative opinions and treatments outside formal health-care services.
Analysis also enabled identification of the function, range and use of coping/self-care strategies among people with psoriasis. Participants reported a variety of goals in relation to coping with their condition, for example reducing symptoms and psychological distress, managing uncertainty and gaining control over symptoms. Although at the outset the study had a particular focus on identifying positive coping strategies, during data collection and analysis it became clear that there were higher than expected levels of distress among the study sample and evidence of common use of less helpful coping strategies in this group (such as minimising psoriasis as unimportant, disengaging from services, stopping treatment use, avoiding social contact, bottling up emotions and acting on angry feelings as well as hypervigilance in hiding affected skin). Some effective coping responses/self-care strategies were found (such as learning to be open about psoriasis with inquisitive people, taking care of general health, seeking emotional support from trusted people, focusing on positive aspects of life, pacing activity to conserve energy and suggesting alternative treatment strategies when consulting with their health-care professionals). We acknowledge that the high levels of distress found could be due to self-selection bias, with ‘most distressed’ people responding to advertising; however, participants interviewed were often working, studying and functioning in roles as parents or carers. Moreover, there were no strong indicators that this sample was atypical.
The analysis also identified a number of culturally specific cross-cutting themes that were particularly salient for participants with a South Asian background. These were linked specifically with high levels of experienced stigmatisation due to the visible nature of psoriasis, which could affect an individual’s standing in their family and wider community. presents illustrative data extracts from the patient study.
Example participant data extracts
Findings (adjunct general practitioner study)
General practitioners reported assessment and management of psoriasis that were not in line with NICE recommendations. First, some GPs recognised psoriasis as a complex condition but most viewed it primarily as a skin complaint. No GP reported undertaking a structured assessment of the impact of psoriasis on patients to incorporate discussion of possible physical and psychological comorbidity. In particular, they reported minimising the potential emotional and social effects of the condition on people’s lives in consultations. Second, GPs did not view or manage psoriasis as a long-term condition with regular monitoring, review and appropriate referral as they would for other long-term conditions seen in primary care. Addressing lifestyle issues in relation to psoriasis was also not a priority. However, most GPs indicated low levels of expertise and confidence to manage psoriasis, citing lack of undergraduate and postgraduate training in dermatology. Illustrative data extracts are presented in .
Example data extracts from workstream 3 (adjunct GP study) illustrating GP/patient views of psoriasis assessment and management
All findings from these studies informed the planning and development of the IMPACT programme workstream 5 new patient materials and practitioner training intervention.
Key conclusions
The daily demands on people living with psoriasis are strong in terms of physical, psychological and social challenges.
Patients feel unsupported by health-care services based on negative experiences of limited support.
Despite NICE recommendations for the management of psoriasis, psoriasis is not yet recognised and managed as a long-term, complex condition. This seems to translate as minimal acknowledgement of the emotional and social needs that need to be addressed alongside accurate diagnosis, regular review and appropriate referral.
Individuals may disengage with consulting about psoriasis, leading to uncontrolled symptoms and suboptimal self-management.
The self-reported levels of expertise and confidence of GPs managing patients with psoriasis in primary care are low compared with other long-term conditions.
Implications
Services need to be designed that address the needs of psoriasis patients, recognise it as a lifelong, potentially life-ruining, complex condition that requires holistic support to address physical, psychological and social effects and comorbidities.
This would involve timely diagnosis, monitoring and regular review as well as referral to specialist services.
Current levels of demand may be an underestimation because of low levels of engagement by patients due to low expectations of service provision.
Findings from this workstream informed the planning and development of the IMPACT programme workstream 5 practitioner training intervention and the new patient materials intervention.
Published outputs from the IMPACT programme112,113 were and cited in the British Psychological Society (BPS) consultation response to the revised NICE guidance (CG153)61 and the IMPACT programme team’s recommendations for NICE quality standards as part of the consultation process.
