Research priorities and identification of a health‐service delivery model for psoriasis from the UK Psoriasis Priority Setting Partnership

Abstract

Summary Background Psoriasis impacts the health and psychosocial functioning of patients, conferring a significant economic burden on healthcare systems. There remain unmet needs in psoriasis care, which if addressed by research, could improve clinical outcomes. Aim To research priorities and identify a health service delivery model from the UK Psoriasis Priority Setting Partnership (PsPSP). Methods Between July 2017 and November 2018, we invited people with lived experience of psoriasis and healthcare professionals to (i) identify unmet needs, and (ii) prioritize the order in which these should be addressed by research. We collaborated with the Psoriasis Association and used methodology established by the James Lind Alliance, which pioneers the joint setting of research priorities by patients and clinicians worldwide. Results In our initial harvesting survey (Survey 1), 2133 questions were submitted by 805 individuals. Submissions that had not been answered by research (true uncertainties) were supplemented with evidence gaps from systematic reviews/guidelines published in the previous 5 years and refined to produce 55 indicative questions. Voting in Survey 2, by 1154 individuals, enabled a shortlist of questions, which were prioritized during the final workshop to produce a top 20 list of research questions. Submissions on health service delivery (5.8% of the total submissions), which were analysed separately, described a blueprint for psoriasis care. Conclusions The PsPSP will inform the translational research agenda, ensuring that future research is relevant for the needs of people with psoriasis and those who manage the disease. Submissions on health service delivery describe a model of holistic, patient‐focused care providing high‐quality, effective management for patients with psoriasis.

WITHDRAWN: The non-pharmacological interventions of people with psoriasis: a scoping review

“…In recent years, there are many scholars to explore the HCM of people with psoriasis. The PsPSP model of high-quality, holistic, patient-focused healthcare lifestyle and living with psoriasis was established [10], personal models in clinical management [60] and PsoWell clinic [11]. To promote the conversion of psoriasis evidence, ProvenCare® management model in USA was proposed, aiming at the obstacles in the implementation of evidences, such as the lack of standardized disease severity scores, standardized treatment methods and uniform fees for non-pharmacological interventions in electronic health records [12].…”

“…Psoriasis has undoubtedly become one of the serious public health problems due to the decrease of Quality of Life (QOL) [8, 9].In recent years, there are many scholars exploring the health care model (HCM) of people with psoriasis. A Psoriasis Priority Setting Partnership (PsPSP) model of high-quality, holistic, patient-focused healthcare lifestyle and living with psoriasis and PsoWell clinic were established [10,11]. To promote the conversion of psoriasis evidences, ProvenCare® management model was proposed, aiming at the obstacles in the implementation of evidences, such as lacking standardized disease severity scores, standardized treatment methods and uniform fees for non-pharmacological interventions in electronic health records [12].…”

Involving children and young people in paediatric research priority setting: a narrative review

“…Little variation was found in the methods used to involve CYP in paediatric research priority setting. The JLA approach was the most frequently used method (n=16) 16–31. This was followed by focus groups (n=2),9 32 a workshop approach (n=2),33 34 the research prioritisation by affected communities (RPAC) method (n=1).…”

“…The JLA approach was the most frequently used method (n=16). [16][17][18][19][20][21][22][23][24][25][26][27][28][29][30][31] This was followed by focus groups (n=2), 9 32 a workshop approach (n=2), 33 34 the research prioritisation by affected communities (RPAC) method (n=1).…”

Non-pharmacological interventions for patients with psoriasis: a scoping review

“…Recently, many scholars have explored the healthcare model (HCM) for patients with psoriasis. A PsPSP model of high-quality, holistic, patient-focused healthcare lifestyle and living with psoriasis and a PsoWell clinic were established 10 11. To promote the conversion of psoriasis evidence, ProvenCare management model was proposed, which aimed at the obstacles in the implementation of evidence, such as a lack of standardised disease severity scores, standardised treatment methods and uniform fees for non-pharmacological interventions in electronic health records 12.…”