A patient-related approach to freedom of disease

Psoriasis has a major impact on mental health, social activities, and quality of life. In a modified Delphi consensus process, experts aimed to define ‘freedom of disease.’ This consensus was the first time that patients were involved in every step.

The effect of psoriasis on well-being and health-related quality of life is often underestimated and may not be captured with current outcome measures [1]. “Why do we need a Delphi consensus on freedom from disease in psoriasis? Because an individual with psoriasis may have different criteria for judging their treatment success,” specialist nurse in psoriasis and PhD student Ms Elfie Deprez (Ghent University Hospital, Belgium) explained [2,3].

The modified Delphi consensus process entails a systematic progression of repeated rounds of voting. It is an effective process for determining expert group consensus where there is little evidence. There were 2 multidisciplinary groups: a facilitating consensus panel with 15 members consisting of 6 people with psoriasis, 3 nurses, and 6 physicians to drive the consent, and a voting group. More than 70% of the voting group were psoriasis patients (n=129), the remaining 30% were healthcare professionals (HCPs). Ms Deprez presented the preliminary outcomes of the consensus.

After the first meeting, 5 core domains were identified by the consensus panel for further discussion: symptom control, beyond skin, well-being, treatment burden, and quality of care. Subsequent workshops refined these themes and identified 5 domains central to the concept of freedom of disease:

1. 1. management of clinical symptoms,
   2. psychosocial elements,
   3. quality of life and well-being,
   4. treatment, and
   5. healthcare team support.

“For patients, it is important to have full access to and understanding of available treatments. Building a long-term relationship with patients seems to be a very high priority for HCPs,” Ms Deprez commented on the results.

HCP and patients were generally very well aligned. HCPs rated psychosocial elements generally higher except for one: “I have hope for my future.” “This is the only one that is underestimated by HCPs,” Ms Deprez said. In addition, HCPs are more likely to rate healthcare team support as a higher priority compared with patients.

“It is really important to give people with psoriasis such an important and loud voice. Our study was the first time that patients were involved in every step and I am sure this will help us to define better treatment targets for our patients in the future,” Ms Deprez concluded.

1. 1. Abrouk M, et al. J Dermatol Treat. 2017;28:488-91.
   2. Deprez E. Defining ‘Freedom from disease’ in plaque psoriasis: Preliminary outputs using delphi methodology, involving nurses, physicians, and people with psoriasis. FC08.01, EADV Congress 2021, 29 Sept–2 Oct.
   3. Gottlieb AB, Armstrong AW. J Rheumatol. 2013:40:1428-33.

 

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Posted on 18 November, 202118 November, 2021