Freedom from disease in psoriasis: a Delphi consensus definition by patients, nurses and physicians

Abstract

Background: Physician-reported clinical outcome and quality of life (QoL) measures are currently used to assess outcomes and direct treatment of plaque psoriasis. However, people with psoriasis may have different criteria for judging treatment success.

Objectives: To build a unified consensus on the definition of 'freedom from disease' from a European stakeholder group, including people with psoriasis, dermatologists and nurses.

Methods: The modified Delphi consensus methodology was used to define 'freedom from disease', with a consensus group consisting of people with psoriasis, nurses and dermatologists. This methodology involved people with psoriasis during the entire process and consisted of a 15-member Facilitating Consensus Panel to drive the programme content and a larger Voting Consensus Panel to vote on defining 'freedom from disease'. The Facilitating Panel agreed on disease domains, and aspects of each domain were put forward to the Voting Consensus Panel to establish relative importance. Following two voting rounds, a meeting was held to agree on a final consensus statement.

Results: The Facilitating Panel consisted of six patient advocacy group representatives, three specialist nurses and six dermatologists. Voting rounds 1 and 2 were completed by 166 and 130 respondents from the Voting Consensus Panel, respectively. The outputs from both rounds of voting were similar, focusing on normality of living, symptom control, and a relationship of mutual respect and trust between the individual with psoriasis and their healthcare professional. The consensus statement emphasizes that 'freedom from disease' is multifaceted and includes the following domains 'management of clinical symptoms', 'psychosocial elements', 'QoL and well-being', 'treatment' and 'healthcare team support'. 'Freedom from disease' means all aspects are addressed.

Conclusions: Freedom from disease in psoriasis is a multicomponent concept including five main domains. This diverse and multifaceted patient perspective will help us to improve understanding of the outcomes of treatment interventions in people with psoriasis.

Figure 1

Modified Delphi methodology to build consensus on the definition of ‘freedom from disease’ for people with psoriasis. Detailed descriptions of the various stages of the consensus‐building process are provided in the Appendix S1 (Supporting Information). For voting rounds 1 and 2, the full Voting Consensus Panel (which included the Facilitating Consensus Panel) was invited to participate in each voting round.

Figure 2

Planning meeting outputs: the five domains used to help guide and initiate the thinking of the Facilitating Consensus Panel.

Figure 3

Delphi questionnaire round 1 output: top five high priority statements scoring 8–10 for (a) Management of clinical symptoms; (b) Psychosocial elements; (c) QoL and well‐being; (d) Treatment; (e) Healthcare team support. QoL, quality of life. Number of responders (n), (a) n = 166; (b) n = 146; (c) n = 135; (d) n = 126–127; (e) n = 116.

Figure 4

Delphi questionnaire round 2 output: statements voted ‘top 3’ from (a) Management of clinical symptoms; (b) Psychosocial elements; (c) QoL and well‐being; (d) Treatment; (e) Healthcare team support. QoL, quality of life. Number of responders (n), (a) n = 130; (b) n = 119; (c) n = 111; (d) n = 109; (e) n = 105.

Figure 5

Final Delphi panel meeting: a consensus statement.