Caregiver Preferences and Barriers Toward Accessing Pediatric Dermatology Care for Childhood Atopic Dermatitis

Abstract

Introduction:

Atopic dermatitis (AD) is a common chronic childhood illness. It is often treated by primary care providers (PCPs) though may require referral to a dermatology specialist.

Methods:

We administered an exploratory survey to 50 caregivers of children ages 0 – 17 years with AD to assess their preferences and barriers toward accessing dermatology specialty care for their child’s AD.

Results:

Caregivers felt PCPs and specialists equally listened to concerns about their child’s AD. However, many felt there was a difference in the care provided and control of the AD and preferred to see a specialist for ongoing management.

Discussion:

Caregivers may benefit from their children being referred to dermatology specialists earlier and more often for their AD. Further work must be done to characterize preferences and barriers toward AD care across race and ethnicity.

Introduction

Atopic dermatitis (AD), the most common chronic skin condition in children, affects up to 25% of children in the United States (US) (Eichenfield et al., 2014). Daily care for the disease can be time-consuming, and flares can lead to hours of lost sleep due to intractable itch for many affected children and their caregivers (Yang et al., 2019). Black and Latinx children bear a disproportionate AD burden in the US when compared to white children (Croce, Levy et al., 2021). Black children have the highest rates of AD, Black children are more likely to have severe AD, and both Black and Latinx children are more likely to have persistent and/or poorly controlled disease than white children (Kim et al., 2019; McKenzie & Silverberg, 2019; Silverberg & Simpson, 2014).

One possible contribution to this disparity is differing access to health care. Black children whose AD is poorly controlled are less likely to see a dermatology specialist for their AD than white children whose disease is under similarly poor control (Wan et al., 2019). Both Black and Latinx children have significantly higher rates of emergency department and primary care visits for the disease than white children, which suggests poor control and/or increased severity requiring additional visits (Fischer et al., 2017; Wan et al., 2019).

Pediatric primary care providers (PCPs) – such as pediatric nurse practitioners (PNPs), physician’s assistants (PAs), and pediatricians – report difficulty managing AD, and thus children with uncontrolled AD may benefit from the addition of dermatology specialty care (Croce, Lopes et al., 2021). Pediatric nurse practitioners in primary care, dermatology clinics, and even other specialty settings are likely to care for a significant number of children with AD and an understanding of how caregivers perceive access to specialty care for childhood AD may facilitate future interventions targeting improved access to care. Additionally, an increased understanding surrounding health care utilization for Black and Latinx children with AD may lead to more equitable AD care and improved outcomes (Fischer et al., 2017). Therefore, we sought to explore preferences and barriers toward accessing dermatology specialty care for childhood AD in a racially and ethnically diverse sample of children in Austin, Texas, as a starting point for future studies directly addressed at understanding and intervening on racial and ethnic disparities in health care access for childhood AD.

Methods

This study was approved by The University of Texas at Austin Institutional Review Board. An exploratory survey was administered to caregivers of patients with AD recruited from the Pediatric Dermatology and Allergy & Immunology clinics affiliated with Dell Children’s Medical Group at Dell Children’s Medical Center, an urban children’s hospital in Austin, Texas. Inclusion criteria included: 0 to <18 years of age, physician- or nurse practitioner- diagnosis of AD, new or established patient, English- or Spanish-speaking. All study documents were translated by a certified translator to Spanish and study visits were conducted in Spanish when that was the caregiver’s preferred language. Though the study was not designed nor powered specifically to consider differences across race or ethnicity, we aimed to recruit a racially and ethnically diverse sample. Race and ethnicity were self-reported by the caregiver. Most questions were answered on a Likert scale (e.g. strongly agree, agree, neither agree nor disagree, disagree, strongly disagree) and descriptive statistics were utilized to analyze the results.

Results

Fifty children aged 3 months to 17.2 years (40% female) were enrolled (age (mean±SD): 4.3±4.4 years) (Table 1). Of these, 47 were recruited from the dermatology clinic and the remaining 3 were from the allergy & immunology clinic. Two of those three participants had previously been seen in the dermatology clinic as well. All 47 of the children recruited from the dermatology clinic were being seen for a chief complaint of AD, and AD was a secondary complaint of the three participants recruited from the allergy & immunology clinic. The participants had a range of household incomes and insurance types, and 62% of the children received public insurance such as Medicaid or CHIP. All caregiver education levels were represented, though the majority had at least a high school degree or the equivalent. The sample was racially and ethnically diverse. Of the 50 children, 54% identified as Hispanic/Latino ethnicity, and 22% of all caregivers preferred Spanish. The participants’ races were white: 42%, Black: 26%; Asian, or Native American, or Pacific Islander: 10%; multiple race: 10%; and 12% declined to answer.

Table 1.

Participant Demographics

Overall	N = 50
Age	4.3±4.4 years (mean±SD) 3 months – 17.2 years (range)
Gender
Female	20(40%)
Male	30(60%)
Insurance Type
Private (Commercial)	18(36%)
Public (Medicaid, CHIP, etc)	31(62%)
Government (TRICARE, etc)	1(2%)
Parental Education Level
8th grade or less, or some HS	7(14%)
HS graduate or equivalent	11(22%)
Some college, or 2-year college graduate	14(28%)
4-year college graduate	11(22%)
Any post-graduate work	7(14%)
Ethnicity (Hispanic/Latino)
Yes	27(54%)
No	23(46%)
Hispanic/Latino (Specify)
Mexican	11(22%)
Hispanic	8(16%)
Honduran	5(10%)
Guatemalan, or Cuban, or Venezuelan	3(6%)
Race
White	21(42%)
Black or African American	13(26%)
Asian, or Native Hawaiian or Pacific Islander	5(10%)
Multiple Race	5(10%)
Declined to answer	6(12%)

In the preceding six months, caregivers reported seeing their PCP a mean of 2.4 times (range 0–7) for their child’s AD and their dermatology specialist (dermatologist or dermatology nurse practitioner) a mean of 1.5 times (range 0–6) for their child’s AD. The majority (60%) of participants reported receiving AD treatment by a dermatology specialist only, 18% reported receiving treatment from their PCP only, and 22% reported receiving AD treatment from both their PCP and their dermatology specialist. Both new and established dermatology patients were recruited for the study, which explains how 98% of participants had seen a dermatologist for their AD yet 18% reported receiving AD treatment from their PCP only.

Of the 49 participants who had ever been seen by a dermatology specialist, 47 answered all of the following questions and the results of those participants are as follows: 10% of the caregivers made the appointment on their own, 17% asked their PCP for a referral, and 72% went to a specialist because their PCP recommended they do so and sent a referral. Of note, 62% of our participants were insured by public insurance such as Medicaid/CHIP, which require referrals as do some commercial insurers. Most participants either agreed (36%) or strongly agreed (34%) that they wished they would have been seen sooner by a specialist, 10% neither agreed nor disagreed, and 19% disagreed that they wished they were seen sooner by a specialist. When asked if they needed to be convinced by their PCP to be seen by a dermatology specialist, 6% agreed, 60% disagreed, and 34% strongly disagreed. Participants were also asked if they felt they needed to convince the PCP to refer them to a dermatology specialist and 10% strongly agreed, 9% agreed, 2% neither agreed nor disagreed, 64% disagreed, and 15% strongly disagreed.

Participants were asked if they felt their PCP listened to their concerns about their child’s AD and they either agreed (38%) or strongly agreed (62%). The majority of participants also felt their PCP seemed to know how to treat their child’s AD; 10% strongly agreed, 58% agreed, 18% neither agreed nor disagreed, 12% disagreed, and 2% strongly disagreed. Participants who had seen a dermatology specialist were also asked if they felt there was a difference in how their PCP and their dermatology specialist cared for their child’s AD, and 26% strongly agreed, 45% agreed, 17% neither agreed nor disagreed, and 12% disagreed. The perceived difference in care was not collected. Regarding whether participants felt their child’s dermatology specialist listened to their concerns regarding their child’s AD, again 38% agreed and 62% strongly agreed. In many cases (32%), it was too soon to tell if the caregiver felt the child’s AD was under better control since seeing a specialist. However, another 33% strongly agreed, 26% agreed, and 9% neither agreed nor disagreed that this was the case. Of note, how the control improved was not measured or queried. The majority of caregivers of those children who established with a dermatology specialist wanted to continue receiving specialty care, with 41% strongly agreeing, 57% agreeing, and 2% neither agreeing nor disagreeing.

The participants in this sample cited some barriers to seeing a dermatology specialist, though most denied significant barriers (Table 2). Those that were reported were ability to get an appointment quickly (9), difficulty leaving work (7), obtaining a referral (6), obtaining childcare for siblings (4), obtaining transportation (3), cost of transportation (2), communication with the dermatology office (2), locating the dermatology office (2), COVID-19 protocols (1), difficulty understanding doctors or nurses (1), accessing a Spanish interpreter (1), inconvenient office hours (1), feeling the visit would not help the child’s AD (1), distrust in the healthcare system (1), and an inability to use telehealth when it was required due to COVID-10 protocols (1).

Table 2.

Caregiver-reported barriers to accessing dermatology specialty care for their child’s AD

Barrier	Number of Times Reported
COVID-19 protocols	1
Difficulty leaving work	7
Difficulty obtaining childcare for siblings	4
Obtaining transportation	3
Cost of transportation	2
Obtaining a referral	6
Ability to get an appointment quickly	9
Difficulty understanding doctors or nurses	1
Communication with the dermatology office	2
Locating the dermatology office	2
Accessing an interpreter	2
Inconvenient office hours	1
Feeling the visit would not help the child’s AD	1
Distrust in the healthcare system	1
Inability to use telehealth when required due to COVID-19	1

Discussion

Caregivers reported that their PCPs and dermatology specialists listened equally to their concerns about their child’s AD but reported that there was a difference in treatment for their child’s AD between the two types of providers, though the perceived difference was not assessed. Caregivers generally reported that their child’s AD was under better control and wished to continue seeing a dermatology specialist for their child’s AD once established, though differences in disease control were also not assessed in this study.

These results suggest caregivers in our population preferred specialty care for their children’s AD due to perceived differences in the type of care provided and disease control achieved, but not due to a perceived lack of concern or ability to manage the disease. We did not ask specifically if caregivers felt PCPs listened to requests for referrals, though an important distinction is that not all referrals that are requested by the caregiver may be warranted. Systemic treatments that are not typically prescribed outside of the specialty setting may be a major contributor to perceived differences in disease management and control. However, many PCPs have cited insufficient training to manage AD in other studies, and may benefit from increased continuing education to support their ability to treat in accordance with expert consensus guidelines (Croce, Lopes et al., 2021). When following those guidelines does not yield satisfactory AD improvement, a short follow-up window and a plan to quickly refer the child to a dermatology specialist may be necessary.

While most caregivers reported that they did not need to be convinced by their PCP to be seen by a dermatology specialist, some felt that they needed to convince their PCP to send them and most wished they had been seen sooner by a specialist. The results were somewhat difficult to interpret, with more participants wishing they had been seen sooner or needing to convince their PCP to send them to a specialist than the number who made the appointment on their own or asked for a referral. Possible explanations for this could include a large proportion of participants requiring referral for insurance purposes and/or a lack of awareness that a specialty visit was an option. Importantly, the most frequently cited barrier to accessing specialty care was ability to get an appointment quickly. Efforts on the part of dermatology specialty clinics to reduce this wait time are crucial, yet hampered by the pediatric dermatology workforce shortage and many dermatology specialists not accepting public insurances such as Medicaid/CHIP (Chaudhry et al., 2013; Silverberg, 2018). Though we did not, future studies should consider number of dermatology specialists in certain areas and travel distances for families.

The survey was administered to a highly selected sample to assess preferences and barriers toward accessing specialty care for AD because the vast majority of participants were recruited from a pediatric dermatology clinic, and the remainder were recruited from another specialty clinic rather than a general population. These caregivers could conceivably have fewer barriers to and more interest in accessing specialty care for their children’s AD. The survey was also administered at the end of the visit, and caregiver preferences could have been influenced by their experience with the provider or varied between dermatology providers. Participants may have had PCPs who were more likely to refer children to a specialist for AD. Type of PCP was not queried, and it would be interesting to understand if there are differences in referral patterns across practice disciplines and settings (e.g. NP, PA, pediatrician, family practice).

This study was exploratory, with the intent to lay the groundwork for future studies more directly exploring racial and ethnic variation in the queried barriers and preferences. Therefore, the sample size was small and the study was not powered to detect differences across race or ethnicity. However, the study was designed to be a jumping off point for future research to understand and reduce disparate access to AD health care. Studies assessing these issues should be done in a primary care population to minimize bias and yield more generalizable results, and they should be specifically designed to determine what differences, if any, exist across different races and ethnicities.

Though exploratory in nature, this is one of the first studies aimed at assessing caregivers’ preferences and perceived barriers toward accessing dermatology specialty care for childhood AD. More research is needed in this area to understand the factors that influence how caregivers utilize health care for their children’s AD. Future research should be done to identify and reduce racial and ethnic disparities in childhood AD, particularly relating to equitable access to health care. Once this is better understood, PCPs will be instrumental in implementing any suggested practice changes.

Ethical considerations:

All research on human subjects was approved by the appropriate research bodies in accordance with national requirements and conformed to the principles embodied in the Declaration of Helsinki (http:/www.wma.net) as well as to the International Ethical Guidelines for Biomedical Research Involving Human Subjects and the International Guidelines for Ethical Review for Epidemiological Studies (http:/www.cioms.ch). We obtained approval from The University of Texas Institutional Review Board and separate Seton Ascension Site Approval to conduct our research.