The study emphasizes unfulfilled needs in measuring patient experiences in Alopezie Area

In robust validation studies in which the internal structure of patients reported outcomes measures (Proms) for Alopecia Area (AA) is evaluated Jama Dermatology.¹

AA is a frequent immune -mediated disease that is classified as a dermatological condition and which is not characterized on the scalp and other hair deposits on the body. An estimated 8.3 million people are affected by AA worldwide, which often leads to considerable impairments in the quality of life (quality of life).

The systemic collection of patient data is used for patient patient development to ensure that the experiences, perspectives, needs and priorities of the patients are sensibly included in the development and evaluation of pharmaceuticals.² The proms tend to include an assessment of the signs of illness and symptoms of patients, the quality of life, the treatment experience, the preferences for results and treatments and the relative importance of these problems. If patients are offered the ability to report reviews, provide an important data source to assess the effectiveness of the treatment.

Researchers and clinicians currently have no consensus about the most suitable AA-specific degrees for research and clinical practice.¹ In addition, no data on the quality of the psychometric properties of existing AA-specific proms are currently available. The authors of the study wanted to derive a comprehensive inventory of AA-specific proms and critically assess their psychometric properties.

A total of 15 articles were identified for the study overview, 7 of which were 7 validation studies in which various psychometric properties of 8 proms were assessed. There were 8 development studies in which 11 AA-specific proms reported:

• Alopezie Area severity Self -assessment (Aassa)
• Scale of the Alopezie -Aeata -not (Saad)
• Alopezie Area Symptom Impact Scale (AASIS)
• Alopecia Area patient Priority results (AAPPO)
• Pro size for eyebrows
• Pro size for eyelashes
• Pro size for the nail look
• Pro size for eye irritation
• Scalp rating per
• Alopezie Area Quality of Life Index (AA-QLI)
• Alopezie Area -Patient QOL (AAQ)

The interrates were in agreement with a match with a correspondence of 96.7% about the title/abstract exclusion. The development design of 3 Proms (AASIS, AA-QLI and Saad) did not explicitly include the participation of the patients. In all proms, 2 constructs composed health-related (HR) QOL and disease symptoms.

A total of 3 instruments have AA-specific HRQOL measures, 5 instruments rated AA-related symptoms, and 3 proms were multi-dimensional. Both constructs informed the results.

The patient sample size for development design was 5 (AAQ) to 45 (Saad). The patient sample size for validation studies was 11 (for the assessment of the symptom -based individuals in content validity) to 1649 (for the internal structural assessment of the AASIS).

The development design used various methods for generation of items, including qualitative approaches such as interviews or focus groups (9 proms), input of experts (8 proms), a literature overview (1 prom), review of a patient with patients with focus (1 prom) and review of the HRQol data of patients with AA (1 prom). The methodical assessment rated the quality of the development design as very good for Saad, Aappo and all 5 symptom -based instruments. The evaluators assessed the validity of the content for 8 proms, while they found the validity of Aassa, AAQ and AA-QLI inconsistent.

There were 6 structural validity studies treated in 5 unique proms. A study carried out a cluster analysis to determine the underlying structure of the AASIS. The reviews showed that the structural validity for 3 proms (Saad, Aappo and AAQ) was sufficient, but only Aappo had a high quality of experience. The researchers compared the proms with 11 different anchor measurements when hypothesent tests were tested for construct validity.

The reviewers evaluated the overall quality of hypothesis tests on construct validity as sufficient for AA-QLI and AASIS and not for Aassa and AAQ. Aappo showed inadequate convergent validity compared to comparison instruments, but in comparison to various subgroups sufficient discriminative validity.

The lack of clinical studies and non-English instruments limited the overall report on the frequency of use and responsiveness in this review. The study was also unable to take into account factors for interpretability and feasibility, which, in addition to the psychometric properties, should influence the selection of instruments.

This was the first study to evaluate the psychometric quality of development design and the validation of AA-specific degrees. “The limited evidence of the internal structure of existing proms are a call for action in these tools, which in the future go through the lack of psychometric validation,” concluded the authors of the study.

References

1. Darchini-Maragheh e, Moussa A, Yoong N, Bokhari L, Jones L, Sinclair R. Alopecia areata-specific patient-related results: a systematic review. Jama Dermatol. 2025; 161 (4): 421–429. DOI: 10.1001/Jamadermatol.2024.6660

2. Wyrwich KW, Kitchen H., Knight S., et al. Development of the Scalp Hair Assessment Pro measure for Alopezie Area. BR J Dermatol. 2020; 183 (6): 1065-1072. DOI: 10.1111/BJD.19024