The Cost of Care: Examining the Financial Burden of OOP Expenses for Caregivers of Children with AD

The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.

This new research, published in Skin Health & Disease, represents the continued analysis of findings from NEA’s survey of the eczema patient and caregiver community about OOP expenses related to eczema. Until this survey there had not been a comprehensive understanding from the patient perspective of the extent of financial costs that Americans bear to manage their AD.

Previous publications from this study revealed: 1) the broad categories of OOP expenses to manage AD and how much money Americans with AD spend to manage their condition; 2) the correlation between increased OOP costs and increased severity of AD; 3) the disproportionate impact of AD-related OOP expenses for Black Americans; and 4) (pending publication) the correlation between polypharmacy and increased OOP expenses for people with AD. 

Between November and December 2019, NEA surveyed adults with either a personal diagnosis of AD or who reported being a primary caregiver for a child or adolescent with AD to determine categories, amount, associations and impact of OOP expenses for AD in U.S. children. This latest paper reveals how children with AD have unique and increased OOP expenses that are associated with significant disease burden.

Prevalence of AD in children

AD is especially common in childhood, with current estimates placing the prevalence of AD at 13% among U.S. children.¹ Among the 1,118 survey respondents who met the inclusion criteria, 21.4% were parents and/or primary caregivers responding on behalf of pediatric AD patients. 

Compared to adults with AD, kids with AD were more likely to be reported as

• Male (40.8% vs. 17.8%); 
• Black/African-American race (14.8% vs. 7.5%); 
• Residing in a home with an annual household income greater than $100,000 (38.4% vs. 26.5%);
• And reside on the East Coast or parts of the South in the U.S. (22.6% vs. 13.8%).¹

Measuring financial burden on caregivers

OOP Expenses

This analysis found the median annual OOP expenses for caregivers of children with AD was $860, with nearly half (48.9%) experiencing OOP costs of $1,000 or more per year.¹ 

Caregivers of children with AD were more likely to report OOP expenses for several health-related categories in the past month, including healthcare providers and prescriptions, hospitalization and emergency room visits, non-prescription health products (including moisturizers and hygiene products) and complementary approaches/care coordination (childcare, specialized cleaning products and specialized clothing and bedding).¹ Previous NEA published research found that increased OOP costs in AD were associated with poorer disease control and increased HCP office visits.² Compared to adults, caregivers of children with AD who reported $1,000 or more in yearly OOP expenditures were more likely to have children with moderate and severe disease (45.3% and 69.7%)¹, as well as significantly increased rates of comorbid food allergy (57.8% vs. 33.6%), frequent/persistent skin infections (26.2% vs. 17.1%) and 5 or more yearly HCP visits for AD (29.7% vs 20.4%).

Household finances

On household financial impacts of OOP AD expenses, most caregivers of pediatric AD patients reported moderate (41.9%), severe (21.7%), or devastating (5.9%) impact.¹ Additionally, Black race proved to be a unique predictor of harmful household financial impact among children with AD.¹ Previous studies demonstrated that Black children have a higher burden of severe AD,³ more persistent disease,^4,5 and increased in-patient⁶ and emergency room¹ utilization. NEA’s findings corroborate this previous research and further highlight racial disparities in the financial burden of AD.¹

Overall findings

NEA concluded that children have uniquely increased OOP expenses associated with AD in several different healthcare-related categories compared to adults, including emergency room visits and inpatient hospitalization. The data also showed poorer disease control and increased allergic and infectious comorbidities among children with AD, despite overall increased yearly HCP visits for AD. These OOP costs are associated with significant disease and household financial burden.¹ 

Additional studies are needed to design strategies to reduce OOP costs and improve outcomes in childhood AD, including optimization of outpatient care.¹ For more information about this study and other research conducted by NEA, visit: NationalEczema.org/surveys.

References:

1. R. Chovatiya, MD, PHD, W. Smith Begolka, MBS, I.J. Thibau, MPH, J.I. Silverberg, MD, PhD, MPH. Burden of Atopic Dermatitis Out-Of-Pocket Expenses in Children. SHD. 2022;[doi]. 
2. Silverberg JI. Health Care Utilization, Patient Costs, and Access to Care in US Adults With Eczema: A Population-Based Study. JAMA Dermatol. Jul 2015;151(7):743-52.
3. Silverberg JI, Simpson EL. Associations of childhood eczema severity: a US population based study. Dermatitis. May-Jun 2014;25(3):107-14. doi:10.1097/DER.0000000000000034
4. Kim Y, Blomberg M, Rifas-Shiman SL, et al. Racial/Ethnic Differences in Incidence and Persistence of Childhood Atopic Dermatitis. J Invest Dermatol. Apr 2019;139(4):827-834. doi:10.1016/j.jid.2018.10.029
5. Berna R, Mitra N, Hoffstad O, Wan J, Margolis DJ. Identifying Phenotypes of Atopic Dermatitis in a Longitudinal United States Cohort Using Unbiased Statistical Clustering. J Invest Dermatol. Feb 2020;140(2):477-479. doi:10.1016/j.jid.2019.08.432
6. Hua T, Silverberg JI. Atopic dermatitis is associated with increased hospitalization in US children. J Am Acad Dermatol. Sep 2019;81(3):862-865. doi:10.1016/j.jaad.2019.05.019