Study Highlights Patient, Caregiver Burden in Pediatric Atopic Dermatitis in Japan

Increasing age is linked to more negative effects on atopic dermatitis patients and their caregivers, according to recent findings, with caregivers reporting major daily life impairments, including work, sleep, and mood.¹

These findings and others were the results of new real-world research conducted in Japan regarding the level of burden carried not only by patients with eczema but also with their families. This new research was conducted to expand upon literature on this topic, given that currently available data does not indicate patients’ age and its association with differing levels of impact on families or guardians.

The investigators—led by Atsushi Otsuka, of the department of dermatology at Kindai University in Osaka, Japan—noted the lack of understanding related to effects of pediatric atopic dermatitis on families in Japan and East Asia in general. They noted the importance of this research, given both the possible cultural differences influencing how family burden is perceived and previous data highlighting the need for effective therapies.²

“This study evaluated the level of disease burden in pediatric and adolescent AD patients and their caregivers/families in Japan and whether this burden varied with the patient's age,” Otsuka and colleagues wrote. “We also investigated treatment patterns by examining the proportion of patients across age groups receiving biologics and other current standard-of-care treatments.”

Background and Design

The investigators allowed either dermatologists or allergists to participate in the study as subjects if they were actively in the process of treating individuals with eczema and responsible for decisions related to management. A minimum of 3 patients under 17 years old with moderate or severe atopic dermatitis had to have been managed by these clinicians per month, including at least a single mild patient with a history of moderate or severe disease, a moderate patient, and a patient with severe disease.

In terms of patient inclusion in this research, subjects had to be within the age range of 17 years old or younger. They also were required to have a clinician-confirmed eczema diagnosis and not be currently involved in any clinical research outside of the study.

The Adelphi Pediatric and Adolescent AD Disease Specific Programme (DSP), known to be conducted in Japan between July - December 2022, was used for data sourcing. The program involved a cross-sectional survey of clinicians as well as their patients.

A patient record form (PRF) was filled out online by physicians for their next 3 - 10 consecutive patients below the age of 17 who also presented with atopic dermatitis in their consultations. Inquiries related to such topics as demographics, the percentage of body surface area affected, history of disease, Investigator Global Assessment (IGA) were provided in the survey.

The investigators looked into the effects of the skin condition on families and guardians as well, specifically inquiring about caregivers' daily activities, sleep schedules, worklifes, and mood. A pen-and-paper patient self-completion (PSC) form was also provided for patients and clinicians, assessing information related to patient views of their disease and its effect on daily activities and life in general, with validated disease-specific patient-reported outcome tools implemented.

A section on the PSC was also included for families to report on their own burden. For younger patients, caregivers completed the form on their behalf. Subjects all used the Children's Dermatology Life Quality Index (CDLQI), the Patient-Oriented Eczema Measure (POEM), the Dermatitis Family Impact (DFI) questionnaire, and the Itch Numerical Rating Scale (NRS) as tools for the research team’s assessment of burden.

Findings

Overall, there had been 55 clinicians and a total of 537 pediatric patients with atopic dermatitis included in the research, with the latter all being aged 17 or younger. The research team concluded that (with standard deviations) participants’ POEM, CDLQI, and DFI scores had been 8.3 (6.8), 9.3 (6.3), and 11.7 (7.2), respectively.

Patients that reported more severe disease were shown by the investigators to have a greater negative impact on their quality of life versus patients with milder disease (P < .001). A major correlation was reported by the team between patients’ ages and increased CDLQI scores noted by either caregivers or patients, with the team highlighting that scores rose by 0.543 points per year of age (P = .01).

The investigators found that caregiver-reported burden had risen alongside their age, adding that scores on the DFI scores rose by 0.325 points per year (P = .01). The team also found that as patients had risen in age, a substantial increase in caregiver burden linked to work life, daily activities, sleep, and mood (P < .05) had been identified. They added that severity of patients’ disease was shown to be associated with impacts on each of these elements (P < .01).

“Overall, this indicates a need for new, efficacious treatments offering improved disease control for pediatric AD patients, which can be initiated at an earlier age to prevent patient and caregiver burden from progressing with age,” they wrote.

References

1. ^{Otsuka, A., Wang, C., Torisu-Itakura, H., Matsuo, T., Isaka, Y., Anderson, P., Piercy, J., Austin, J., Marwaha, S. and Tanaka, A. (2024), Patient and family burden in pediatric atopic dermatitis and its treatment pattern in Japan. Int J Dermatol. https://doi.org/10.1111/ijd.17256.}
2. ^{Su JC, Kemp AS, Varigos GA, Nolan TM. Atopic eczema: its impact on the family and financial cost. Arch Dis Child. 1997; 76(2): 159–162.}