Study Highlights Psychosocial Burden on Caregivers of Adolescents with Alopecia Areata

Significant psychosocial and occupational burdens are reported by caregivers of adolescents living with alopecia areata, recent findings suggest, as well as mental and emotional well-being impairments.1

These data resulted from an analysis by such investigators as Rodney Sinclair, from Sinclair Dermatology in Australia, who noted the value of assessing the effects of alopecia areata on caregiver quality of life for recognizing any unmet needs among such individuals. They also noted determination of caregivers’ needs in terms of healthcare and social support is invaluable.

Prior to their current analysis, the investigative team highlighted that there had been a notable lack of research evaluating the psychosocial and occupational effects of the hair loss condition on parents and caregivers.2

“This study aimed to investigate the impact of [alopecia areata] on psychosocial well-being, work productivity and [quality of life] among caregivers of adolescents with [alopecia areata] living in Australia,” Sinclair and colleagues wrote.1

The investigative team conducted a non-interventional, cross-sectional online survey in Australia from April - July 2023, working to evaluate the experiences of caregivers of adolescents living with alopecia areata. They assessed both dyadic caregivers—those whose adolescent dependents also filled out the study's survey—and non-dyadic caregivers—whose dependents did not fill out the survey or were unable to take part.

Recruitment of subjects was supported by the Australia Alopecia Areata Foundation (AAAF), which helped disseminate the survey nationally. Those deemed eligible as respondents were parents or legal guardians in the age range of 18 or older. They would also be required to be currently caring for adolescents aged 12 - 17 years who were living with a medically confirmed, self-reported diagnosis of alopecia areata for a minimum of 3 months before the survey's completion.

Caregivers involved in the study as subjects filled out a set of online screening questions to confirm their eligibility. The questionnaire provided to participants was completed online and involved the answering of inquiries related to treatment and clinical details (gathered from caregivers for nondyadic participants and from adolescents themselves in dyadic pairs), sociodemographic data, and information on the psychosocial and work-related impacts of caring for an adolescent with alopecia areata.

Overall, Sinclair and colleagues found alopecia areata among adolescents has notable psychological effects on their guardians and caregivers. Despite only 24.5% of all caregivers noting symptoms of depression—a finding the investigators noted was consistent with a prior US analysis reporting rates ranging from 7.3% - 18.3%—the prevalence of anxiety was shown by the team to be significantly higher in this sample at 62.3%.

This was compared with the US study's range of 20.7% - 42.7%. Notably, the investigative team highlighted that the severity observed among dyadic caregivers of adolescents' hair loss showed limited impact on reported levels of anxiety or depression.

Quality of life was evaluated by the team via the Quality of Life in Child’s Chronic Disease Questionnaire (QLCCDQ), with guardians and caregivers in the analysis highlighting lower scores across all domains compared to a reference population of caregivers of children labeled as healthy. Reported mean scores included: symptoms (4.0), emotions (4.0), family (5.8), social (5.2), and occupational (5.3), compared scores of 5.9, 6.2, 6.3, 6.6, and 6.4, respectively, among those in the healthy cohort. Such findings suggest a reduced quality of life linked with caregiving for adolescents with the hair loss condition.

Sinclair and coauthors pointed to a few notable differences between dyadic and nondyadic caregivers in their study's results. Nondyadic caregivers were found to have higher anxiety and depression levels as well as lower QLCCDQ scores compared to their dyadic counterparts. This finding would suggest a heavier psychosocial and occupational burden.

Although the investigators noted that the reason for such disparities is not definitively clear, 1 possible explanation they highlighted was that adolescents dealing with more severe alopecia areata effects may have opted out of taking part in the survey. This decision would, thereby, raise stress levels among their caregivers.

Additionally, the investigative team noted that over half of caregivers (50.9%) had experienced impairments in their daily activities. They also noted that nearly half (49.1%) of subjects pointed to impacts in their work performance, further underscoring the notable occupational burden of caring for an adolescent with alopecia areata.

“The study revealed a substantial psychosocial and occupational burden and impaired emotional well-being among caregivers of adolescents with [alopecia areata],” they concluded.1 “[Alopecia areata] in adolescents can profoundly affect the entire family, and these findings highlight the importance of recognising and understanding the disease-related burden that extends beyond the individual patient.”

References

1. Sinclair R, Eisman S, Lee CMY, da Fonseca Pereira C, et al (2025). Psychosocial and Occupational Burden on Caregivers of Adolescents With Alopecia Areata in Australia. Australas J Dermatol. https://doi.org/10.1111/ajd.14519.

2. E Putterman, DP Patel, G Andrade, et al. “Severity of Disease and Quality of Life in Parents of Children With Alopecia Areata, Totalis, and Universalis: A Prospective, Cross-Sectional Study,” Journal of the American Academy of Dermatology 80, no. 5 (2019): 1389–1394, https://doi.org/10.1016/j.jaad.2018.12.051.