Developing Patient-Reported Outcome Measure for Hair and Skin Disorders

August 2022 in “ medRxiv (Cold Spring Harbor Laboratory) ”

Yu-Feng Chang, Lara Drake, Sophia Reyes-Hadsall, John S. Barbieri, Arash Mostaghimi

alopecia areata androgenic alopecia lichen planopilaris central centrifugal cicatricial alopecia sebopsoriasis hair disorders scalp disorders eyebrow disorders eyelash disorders beard-related skin disorders hair loss baldness scalp conditions eyebrow conditions eyelash conditions beard skin conditions

TLDR The goal is to create a tool for patients to report their experiences with various hair and scalp disorders.

This phase I study aims to develop a patient-reported outcome measure (PROM) for various hair disorders, including alopecia areata, androgenic alopecia, lichen planopilaris, central centrifugal cicatricial alopecia, and sebopsoriasis. The study will use thematic analysis of qualitative semi-structured interviews with patients aged 18 years and older. The interviews will focus on the patients' physical appearance, disease journey, treatment goals, physical symptoms, and psychosocial impact. The goal is to create a PROM that can be applied to a multitude of hair-related disorders. The study will continue until thematic saturation is reached, ensuring patient diversity in gender, race and ethnicity, age, and hair-related disorder. The study has been approved by the Brigham and Women’s Hospital Institutional Review Board.

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Research cited in this study

3 / 3 results

research Development of the Alopecia Areata Patient Priority Outcomes Instrument: A Qualitative Study

11 citations, March 2021 in “Dermatology and therapy”

Researchers created a new tool to measure the effects of alopecia areata from the patient's view, focusing on hair loss, daily life, and emotional health.

‘You Lose Your Hair, What’s the Big Deal?’ I Was So Embarrassed, I Was So Self-Conscious, I Was So Depressed: A Qualitative Interview Study to Understand the Psychosocial Burden of Alopecia Areata

research ‘You Lose Your Hair, What’s the Big Deal?’ I Was So Embarrassed, I Was So Self-Conscious, I Was So Depressed: A Qualitative Interview Study to Understand the Psychosocial Burden of Alopecia Areata

30 citations, September 2020 in “Journal of Patient-Reported Outcomes”

Alopecia Areata (AA) causes significant emotional distress, including feelings of embarrassment, depression, and anxiety, and impacts social interactions and daily activities.

research Alopecia Areata and Health-Related Quality of Life: A Systematic Review and Meta-Analysis

128 citations, February 2016 in “British Journal of Dermatology”

Alopecia areata significantly lowers the quality of life, especially in emotional and mental health aspects.

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community Diffuse hair loss and scalp biopsies

in Research 692 upvotes 3 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 C’est terrible - at my wits end

in Female 443 upvotes 1 year ago

A 29-year-old woman is experiencing gradual hair thinning since age 15, suspects Androgenic Alopecia, and has tried 5% minoxidil with little success. She has purchased various hair loss treatments including minoxidil, dutasteride, finasteride, and spironolactone, but is cautious about starting them due to potential interactions with her ADHD medication.

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in Research/Science 74 upvotes 2 years ago

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community I’m 14 years old and I’m losing more hair than my dad. I’ve gone to the doctor 2 times because of this and I’ve received no help. I’m starting to feel like It’s worthless and my hairs gonna look like this forever. I don’t know how anyone could help me but it’s always worth a shot.

in Treatment 4 years ago

A 14 year old who is experiencing hair loss and has not received any help from the doctor, with advice being given to try different doctors, get tested for underlying conditions and intolerances, buzz it short as an option and treatments that could slow down or reverse the hair loss such as minoxidil, finasteride, RU58841 and addressing the cause of the hair loss.

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in Research/Science 209 upvotes 6 months ago

The DHT itch is linked to hair loss and persists despite finasteride use; switching to dutasteride helped alleviate the itch and promoted regrowth. Some users suggest seborrheic dermatitis as a cause and recommend treatments like medicated shampoos, vitamin D, and minoxidil.

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