Creating Value for Psoriasis Patients: Development of a Patient-Driven Outcome Set for Clinical Practice

    October 2021 in “ Journal of Investigative Dermatology ”
    Niels Hilhorst, Elfie Deprez, Nanny van Geel, Deepak Balak, Isabelle Hoorens, Jo Lambert
    Image of study
    TLDR Patients with psoriasis ranked symptom control and treatment efficacy as most important for their care.
    The study aimed to develop a patient-driven outcome set for managing psoriasis, a chronic inflammatory skin disease that significantly impacts patients' quality of life. A systematic review was first conducted, resulting in 23 patient-relevant outcomes. These outcomes were then presented to 10 patients to verify their relevance, and subsequently ranked by 120 patients attending a psoriasis clinic. The most important outcomes identified by patients were symptom control, treatment efficacy, confidence in care, and control of disease, while the least important were comorbidity control, productivity, and cost of care. Two outcomes were excluded as they were deemed inappropriate. The study concluded with the creation of the first patient-driven outcome set for psoriasis management, which may serve as a benchmarking tool to appraise and improve care across centers and among individual healthcare providers.
    Discuss this study in the Community →

    Related Community Posts Join

    6 / 96 results
      If You Have DUPA, PLEASE READ THIS: Everyone Should Be Scalp Biopsied

      community If You Have DUPA, PLEASE READ THIS: Everyone Should Be Scalp Biopsied

      in Research  830 upvotes 5 months ago
      Scalp biopsies are crucial for diagnosing hair loss conditions like Diffuse Unpatterned Alopecia (DUPA) and retrograde hair loss, as treatments like finasteride and dutasteride may not be effective if other conditions are present. Combining PPAR-GAMMA agonists with retinoids could improve treatments for conditions like Lichen Planopilaris.

      community Scalp Inflammation is eating my hair!

      in Chat  26 upvotes 9 months ago
      A user with seborrheic dermatitis is experiencing bald spots and hair thinning despite changing their diet and taking oral minoxidil. Another user suggests using ketoconazole shampoo properly, using a scalp massager, applying rosemary/peppermint oil, keeping hair short, and taking fish oil to improve scalp health.
      Compressed part of research of theory of androgenic/anabolitic balance. AGA h-responders analytic. Theory of physio-metabolitic method of anti AGA treatment

      community Compressed part of research of theory of androgenic/anabolitic balance. AGA h-responders analytic. Theory of physio-metabolitic method of anti AGA treatment

      in Research  768 upvotes 3 months ago
      The treatment for androgenetic alopecia involves using finasteride and minoxidil with intense exercise and cold exposure to boost metabolism and reduce androgenic effects, potentially leading to hair regrowth. This approach may activate biological pathways for improved hair and overall health.
      [object Object]

      community Sunlight: Does it Stimulate Hair Growth or Hair Loss?

      in Research/Science  64 upvotes 9 months ago
      The conversation discusses whether sunlight exposure affects hair growth or loss, with mixed anecdotes and theories but no clear consensus. Some suggest moderate sunlight can benefit hair by providing vitamin D, while others doubt its effectiveness compared to treatments like Minoxidil or finasteride.

      community I lost the fight against MPB at age 22 despite being on treatments.

      in Finasteride/Dutasteride  72 upvotes 1 year ago
      The user "ajsr8" shared their story of hair loss despite being on treatments. They started using finasteride in 2019 and later tried topical minoxidil, but it didn't seem to work. They also experienced side effects from other treatments. They are considering cutting off their hair and stopping the medications if there is no improvement in three months. Other users suggested trying different treatments and getting a blood test to check for underlying conditions.

    Similar Research

    5 / 1000+ results
      Dermatology

      research Dermatology

      1 citations, February 2004
      Skin diseases are common and can significantly affect people's lives; better outcome measures and ethical clinical trials are needed to improve dermatology care.
      Abstracts

      research Abstracts

      3 citations, May 2018 in “Experimental Dermatology”
      Young HS patients often have other physical and mental health issues, and research on HS covers a wide range of topics including genetics, triggers, treatments, and the need for more data.
      [object Object]
      Autoimmune Skin Disorders

      research Autoimmune Skin Disorders

      2 citations, January 2019
      The document concludes that autoimmune skin disorders are treated with corticosteroids and immunosuppressive drugs.
      The Role of Hormones in Hidradenitis Suppurativa: A Systematic Review

      research The Role of Hormones in Hidradenitis Suppurativa: A Systematic Review

      6 citations, December 2022 in “International Journal of Molecular Sciences”
      Hormone imbalance is linked to Hidradenitis Suppurativa, a skin condition, and treatments like anti-androgenic therapy and metformin can help. It's also suggested to check patients for insulin resistance and Polycystic Ovary Syndrome.