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Headline
This research programme found that patients and professionals are likely to benefit from the provision of support and training that broadens understanding of psoriasis and supports appropriate health behaviour change.
Abstract
Background:
Psoriasis is a common, lifelong inflammatory skin disease, the severity of which can range from limited disease involving a small body surface area to extensive skin involvement. It is associated with high levels of physical and psychosocial disability and a range of comorbidities, including cardiovascular disease, and it is currently incurable.
Objectives:
To (1) confirm which patients with psoriasis are at highest risk of developing additional long-term conditions and identify service use and costs to patient, (2) apply knowledge about risk of comorbid disease to the development of targeted screening services to reduce risk of further disease, (3) learn how patients with psoriasis cope with their condition and about their views of service provision, (4) identify the barriers to provision of best care for patients with psoriasis and (5) develop patient self-management resources and staff training packages to improve the lives of people with psoriasis.
Design:
Mixed methods including two systematic reviews, one population cohort study, one primary care screening study, one discrete choice study, four qualitative studies and three mixed-methodology studies.
Setting:
Primary care, secondary care and online surveys.
Participants:
People with psoriasis and health-care professionals who manage patients with psoriasis.
Results:
Prevalence rates for psoriasis vary by geographical location. Incidence in the UK was estimated to be between 1.30% and 2.60%. Knowledge about the cost-effectiveness of therapies is limited because high-quality clinical comparisons of interventions have not been done or involve short-term follow-up. After adjusting for known cardiovascular risk factors, psoriasis (including severe forms) was not found to be an independent risk factor for major cardiovascular events; however, co-occurrence of inflammatory arthritis was a risk factor. Traditional risk factors were high in patients with psoriasis. Large numbers of patients with suboptimal management of known risk factors were found by screening patients in primary care. Risk information was seldom discussed with patients as part of screening consultations, meaning that a traditional screening approach may not be effective in reducing comorbidities associated with psoriasis. Gaps in training of health-care practitioners to manage psoriasis effectively were identified, including knowledge about risk factors for comorbidities and methods of facilitating behavioural change. Theory-based, high-design-quality patient materials broadened patient understanding of psoriasis and self-management. A 1-day training course based on motivational interviewing principles was effective in increasing practitioner knowledge and changing consultation styles. The primary economic analysis indicated a high level of uncertainty. Sensitivity analysis indicated some situations when the interventions may be cost-effective. The interventions need to be assessed for long-term (cost-)effectiveness.
Limitations:
The duration of patient follow-up in the study of cardiovascular disease was relatively short; as a result, future studies with longer follow-up are recommended.
Conclusions:
Recognition of the nature of the psoriasis and its impact, knowledge of best practice and guideline use are all limited in those most likely to provide care for the majority of patients. Patients and practitioners are likely to benefit from the provision of appropriate support and/or training that broadens understanding of psoriasis as a complex condition and incorporates support for appropriate health behaviour change. Both interventions were feasible and acceptable to patients and practitioners. Cost-effectiveness remains to be explored.
Future work:
Patient support materials have been created for patients and NHS providers. A 1-day training programme with training materials for dermatologists, specialist nurses and primary care practitioners has been designed. Spin-off research projects include a national study of responses to psoriasis therapy and a global study of the prevalence and incidence of psoriasis. A new clinical service is being developed locally based on the key findings of the Identification and Management of Psoriasis Associated ComorbidiTy (IMPACT) programme.
Funding:
This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 10, No. 3. See the NIHR Journals Library website for further project information.
Contents
- Plain English summary
- Scientific summary
- SYNOPSIS
- Epidemiology of psoriasis and its association with risk of cardiovascular disease
- Cardiovascular risk in patients with psoriasis: screening study and pulse wave velocity measures in people with psoriasis
- Cardiovascular disease risk communication and reduction in psoriasis
- Coping with psoriasis: learning from patients
- Understanding the professional role in supporting lifestyle change in patients with psoriasis
- Background
- Aim
- Study 4.i: content analysis of health-care professionals’ core training competencies
- Study 4.ii: in-depth qualitative interview study of health-care professionals about supporting patients with lifestyle behaviour change
- Study 4.iii: observational study of lifestyle behaviour support information for patients in clinic settings
- Study 4.iv: online survey of dermatology specialist nursing staff
- Key conclusions
- Implications
- Psoriasis and Wellbeing (PSO WELL): developing patient materials to broaden understanding of psoriasis as a long-term condition, psoriasis-associated comorbidities and the role of self-management
- Psoriasis and Wellbeing (PSO WELL): developing a patient-centred approach using motivational interviewing skills with dermatology clinicians to support healthy living in people with psoriasis
- Valuing the interventions with a stated preference survey
- Health economics modelling of costs of interventions for people with psoriasis
- Patient, public and practitioner involvement in the IMPACT programme
- Introduction
- Involvement
- Research user group
- The IMPACT programme steering committee patient representatives
- Finding the right people: research user group and patient representatives
- Methods of involvement: patients, the public and practitioners – maximising participation
- The IMPACT programme patient representatives
- Professional representatives: expert group consultation
- Patient representatives: expert group consultation
- Participation
- Engagement
- Outcomes and reflection
- Monitoring and evaluation
- Lessons learned and recommendations
- Conclusion: where do we go from here?
- Tales from the heart and the head: lessons from the IMPACT programme
- Context and aims of the IMPACT programme application to the National Institute for Health Research
- Clinical and research contexts of the work
- Key conclusions from the IMPACT programme
- Strengths and limitations
- Methodological developments and lessons learned
- Implications of IMPACT findings
- Implications for future research: remaining questions
- Acknowledgements
- References
- Appendix 1. Selection criteria and data extraction forms used for systematic review of economic evaluations
- Appendix 2. Characteristics of practices participating in workstream 2 screening study
- Appendix 3. Results from pulse wave velocity study
- Appendix 4. PhD thesis abstract: risk communication and lifestyle behaviour change in people with psoriasis
- Appendix 5. The dermatology specialist nurse survey of lifestyle management
- Appendix 6. Patient Readiness to Engage in Health Information Technology survey: responses from 127 individuals
- Appendix 7. Recruitment advert for PSO WELL Training
- Appendix 8. Detailed methods and results of the stated preference survey
- Appendix 9. Stated preference survey materials
- Appendix 10. Economic model development and International Society for Pharmacoeconomics and Outcomes Research checklist
- Appendix 11. Economic model structure, components, assumptions and results
- Appendix 12. The IMPACT programme steering committee: patient representative terms of reference
- List of abbreviations
About the Series
Declared competing interests of authors: The contributions of Pauline A Nelson, Anna Chisholm, Jamie Elvidge, Matthew Hamilton, Karen Kane, Alison Littlewood, Dionysius Ntais, Rosa Parisi and Chrintina Pearce were supported by a grant from the NIHR during the conduct of the study. Christopher Keyworth’s contribution and PhD studentship was supported by a grant from the NIHR during the conduct of the study. Lis Cordingley received an unrestricted grant from Pfizer Inc. (New York, NY, USA) and personal fees from AbbVie Inc. (Chicago, IL, USA) and Jannsen Pharmaceutica (Beerse, Belgium) outside the submitted work. Pauline A Nelson has received personal fees from Celgene Corporation (Summit, NJ, USA), Amgen Inc. (Thousand Oaks, CA, USA) and John Wiley & Sons Ltd (Chichester, UK) outside the submitted work. Darren Ashcroft reports grants from AbbVie Inc. and personal fees from Pfizer Inc. and GlaxoSmithKline plc (London, UK) outside the submitted work. Christine Bundy received an unrestricted grant from Pfizer Inc. and personal fees from AbbVie Inc., Jannsen Pharmaceutica, Celgene and Novartis Pharmaceuticals UK Ltd (Frimley, UK) outside the submitted work. Anna Chisholm received personal fees from AbbVie Inc., Celgene Corporation and Jannsen Pharmaceutica outside the submitted work. Martin Rutter received personal fees from Ascensia Diabetes Care Holdings AG (Basel, Switzerland), Cell Therapy Catapult Ltd (London, UK) and Roche Diabetes Care Ltd (Burgess Hill, UK) and personal fees and an educational grant from Novo Nordisk A/S (Bagsværd, Denmark) outside the submitted work. Helen Young received personal fees from Janssen Pharmaceutica, Novartis Pharmaceuticals UK Ltd, Union Chimique Belge (UCB) S.A. (Brussels, Belgium), MEDA, Stiefel Laboratories (Research Triangle Park, NC, USA), Amgen Inc. and AbbVie Inc. and personal fees and non-financial support from LEO Pharma A/S (Ballerup, Denmark) and Eli Lilly and Company (Indianapolis, IN, USA) outside the submitted work. Christopher EM Griffiths received grants and personal fees from AbbVie Inc., Janssen Pharmaceutica, Eli Lilly and Company, Novartis Pharmaceuticals UK Ltd, Sandoz International GmbH (Holzkirchen, Germany), Pfizer Inc., LEO Pharma A/S and Almirall, S.A. (Barcelona, Spain) and personal fees from Sun Pharmaceuticals Industries Ltd. (Mumbai, India) and UCB outside the submitted work. Helen McAteer is Chief Executive of the Psoriasis Association, which has received grants from Thornton and Ross Derma (Thornton and Ross Ltd, Linthwaite, UK), AbbVie Inc., Galderma S.A. (Lausanne, Switzerland), Dermal Laboratories Ltd (Hitchin, UK), LEO Pharma A/S, Novartis Pharmaceuticals UK Ltd, Celgene and Eli Lilly and Company, and corporate membership fees from AbbVie Inc., Novartis Pharmaceuticals UK Ltd, Celgene Corporation and Almirall S.A.; she did not receive fees personally. Deborah Symmons reports grants from Arthritis Research UK, NIHR and the British Heart Foundation during the conduct of the study.
Article history
The research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0608-10163. The contractual start date was in September 2010. The final report began editorial review in October 2017 and was accepted for publication in January 2019. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Last reviewed: October 2017; Accepted: January 2019.
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