Authors: Micah A. Skeens (Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio, USA; College of Medicine, The Ohio State University, Columbus, Ohio, USA; Division Hematology/Oncology/BMT, Nationwide Children's Hospital, Columbus, Ohio, USA), Adelaide Booze (Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio, USA), Mark Ranalli (College of Medicine, The Ohio State University, Columbus, Ohio, USA; Division Hematology/Oncology/BMT, Nationwide Children's Hospital, Columbus, Ohio, USA), Anna Olsavsky (Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio, USA)
Categories: Brief Report, Appalachian residency, medically underserved areas, multireporter assessment, pediatric cancer, rural health, social determinants of health, symptom burden
Source: The Journal of Rural Health
Doi: 10.1111/jrh.70071
Authors: Micah A. Skeens, Adelaide Booze, Mark Ranalli, Anna Olsavsky
Children with cancer experience significant symptom burden, worsened by social deprivation. This study examines social determinants of health, including Appalachian residency, influence on symptom burden.
Caregiver‐child dyads were recruited within 1 year of cancer treatment. Addresses were coded for social determinants of health (SDOH) Area Deprivation Index (ADI), rurality, medically underserved areas (MUA), and Appalachian residency. Total child symptom scores (0–31) were calculated for dyad reports using the Memorial Symptom Assessment Scale. Provider matching symptom reports were extracted from electronic medical records. Descriptive statistics and correlations examined associations between child, caregiver, and provider symptom reports and SDOH. Significant correlations informed three multiple linear regression models examining SDOH predictors of child symptoms by reporter.
Fifty‐five caregiver‐child dyads were recruited. Caregivers were 65.5% female and 87.3% White. Children were 50.9% male, 85% White, an average of 12 years old, 30.9% rural, and 20.0% Appalachian. ADI scores (M = 4.22) indicated moderate disadvantage, and 14.5% were medically underserved. On average, children reported 8.61 symptoms, while caregivers reported 7.15, and providers recorded 1.87 child symptoms. For children, a bivariate association and significant regression model revealed Appalachian children experienced a higher number of symptoms. For caregivers, bivariate associations indicated a higher ADI was associated with more symptoms. For providers, bivariate associations revealed higher symptoms were associated with rurality, MUA, and Appalachian residency, though only Appalachian residency remained significant in the regression model.
Results suggest Appalachian residency is associated with higher symptom burden for children with cancer. Findings support culturally sensitive care to minimize symptom burden.
Cancer diagnoses affect approximately 1 in 257 children and adolescents in the United States annually. ^1^ Pediatric cancer is not only life‐threatening, but also life‐altering, as it brings a cascade of physical, emotional, and psychosocial challenges for affected children and their families. The experience of pediatric cancer extends far beyond medical treatments, profoundly impacting the overall well‐being of children as well as their caregivers (i.e., legal guardians), who often bear the emotional and logistical burdens of navigating complex health care systems. ^2^ , ^3^ , ^4^ Children undergoing cancer treatment experience significant symptom burden, including pain, fatigue, nausea, and emotional distress. ^5^ , ^6^ These symptoms not only disrupt daily life but also compromise long‐term physical and emotional outcomes. ^7^ Addressing symptom burden remains crucial in pediatric oncology. However, disparities persist, driven by social determinants of health (SDOH) such as resource availability and environmental factors.
Emerging evidence suggests children living in socially deprived areas experience exacerbated symptoms, such as poorer sleep quality, increased stress and fatigue, and reduced positivity. These disparities reflect broader systemic inequities shaped by factors such as socioeconomic status, geographic location, access to health care, and availability of social support. ^8^ , ^9^ For children in rural or underserved areas, limited health care infrastructure, longer travel times to specialized cancer centers, and financial barriers may compound symptom burden. ^2^ , ^10^ Furthermore, cultural factors and stigma associated with health care access in certain communities, such as Appalachia, may further exacerbate these inequities. ^11^ In Appalachia, traditional cultural values emphasizing self‐reliance and privacy frequently discourage residents from seeking medical care, often perceiving health care utilization as a sign of weakness or vulnerability. ^12^ Additionally, historical distrust of health care systems, compounded by experiences of marginalization and stereotyping, intensifies reluctance to access needed health services, perpetuating health disparities within this region. ^12^ , ^13^ , ^14^ These challenges highlight the critical role of SDOH in shaping health outcomes and underline the importance of addressing these disparities in pediatric oncology care.
Despite growing awareness of the role of SDOH in influencing health outcomes, there is limited research examining how these determinants affect symptom reporting from multiple perspectives, including those of children, caregivers, and health care providers. Understanding symptom burden through a multireporter framework is essential to capture the full scope of experiences and to identify gaps in symptom recognition and management. Additionally, the underrepresentation of rural and underserved populations in pediatric cancer research ^15^ compounds this gap, leaving critical questions about the interplay between SDOH and symptom experiences unanswered. Appalachia, in particular, represents a unique and understudied population due to the heightened health disparities caused by geographic, economic, and cultural barriers. ^16^
This study seeks to explore the relationship between SDOH and symptom reporting across multiple reporters (i.e., children, caregivers, and providers), with a particular focus on rural, medically underserved, and/or Appalachian populations. By identifying disparities in symptom burden and relationships to social determinants, findings have the potential to inform targeted interventions to reduce symptom reporting disparities and improve care for vulnerable pediatric cancer patients. These insights may also contribute to broader strategies for enhancing equity in pediatric oncology care across diverse populations.
This IRB‐approved, cross‐sectional study from February to July 2022 recruited child‐caregiver dyads from a large, Midwest independent children's hospital. Recruitment occurred during routine outpatient clinic appointments. Informed consent was obtained from caregivers for themselves and their children, children ≥7 years provided assent. Eligible children were 6 and 17 years old, English‐speaking, and oncology treatment within the past year. Caregivers were at least 18 years old to participate. Exclusion criteria included children with developmental delays or conditions making it difficult for them to process or answer verbal questions.
Caregivers provided demographic information, including caregiver and child gender, race, ethnicity, relationship to the child, marital status, highest level of education, employment status, annual household income, and child age. Clinical details, such as child's diagnosis and date of diagnosis, were extracted from electronic medical records (EMRs) and used to calculate the number of days since diagnosis and days since the last treatment.
The Memorial Symptom Assessment Scale (MSAS) was used to independently gather past‐week symptoms from children and caregivers. The MSAS assesses the presence or absence of 31 symptoms, with responses coded as 1 for “yes” and 0 for “no.” Research staff reviewed progress notes s within 1 week of the clinic visit when self‐report was collected, including the visit day, to extract documentation of the same 31 symptoms from “providers,” such as nurses, physicians, and advanced practice providers. Provider symptom extraction documentation included aforementioned EMR variables and the 31 MSAS symptoms. The provider type and number of notes per child was not recorded, however each participant had at least one provider note reviewed.
Participants’ addresses were used for SDOH variables. The Area Deprivation Index (ADI) ranks neighborhoods according to socioeconomic disadvantage on a scale from 1 to 10, with 1 indicating the least disadvantaged and 10 representing the most disadvantaged. ^17^
Rural‐Urban Commuting Area (RUCA) classifies areas based on rurality, with scores of 1–3 indicated non‐rural and scores of 4–10 indicated rural areas. ^18^
Medically Underserved Area (MUA) classifications were used to assess health care access, where 0 indicated a medically served area and 1 indicated an underserved area. ^19^ Finally, Appalachian residency was determined by county, based on Appalachian Regional Commission (ARC) list, with 0 for non‐Appalachian areas and 1 for Appalachian areas. ^20^ These SDOH variables are distinct; although some overlap may occur (i.e., a medically underserved area may also be an Appalachian area), inclusion in one group does not imply inclusion in another.
Descriptive statistics and correlations assessed relationships among SDOH variables, child age, and symptom reports from children, caregivers, and providers. Significant correlations between SDOH and symptom reports informed three multiple linear regression models (i.e., child, caregiver, and provider symptom reports) examining triadic reports of child symptoms, while accounting for child age.
A total of 55 child‐caregiver dyads (n = 110) participated. One caregiver (n = 55) was recruited per family (female: 65.5%, n = 36; White: 87.3%, n = 48). Fifty‐five children were 50.9% (n = 28) male, 85% (n = 47) White, and a mean of 12 years old (SD = 3.50; 6–17) (Table 1).
On average, children reported 8.61 symptoms (SD = 7.69), caregivers reported 7.15 child symptoms (SD = 6.56), and providers reported 1.87 child symptoms (SD = 1.88). Children's average ADI was 4.22, indicating moderate socioeconomic disadvantage. Of 55 children, 17 were rural (30.9%), 11 were Appalachian (20.0%), and 8 were from a MUA (14.5%). Participants traveled an average of 44 miles (SD = 40.1; 5.4–230.8) with 25% traveling >72.8 miles.
Bivariate correlations were examined among participant SDOH characteristics and triadic symptom reports. Children reported significantly more symptoms when residing in Appalachia. Caregivers reported significantly more child symptoms when they resided in a deprived area. Providers reported significantly more symptoms when the child resided in a rural area, MUA, and Appalachian area (see Table 2). Significant correlates of child, caregiver, and provider symptom reports were included in multiple linear regression models, along with child age.
Linear regression analyses revealed Appalachian residency significantly predicted higher symptom reports by children (13% variance explained) and providers (28% variance explained). Although caregiver‐reported models were not significant, higher neighborhood deprivation (ADI) significantly correlated with increased caregiver‐reported symptoms. Child age was not significant across all models (see Table 3).
This study explored the effects of social determinants of health (SDOH) on symptom reporting in pediatric cancer patients, incorporating perspectives from children, caregivers, and health care providers. Children reported the highest number of symptoms, followed by caregivers, with providers documenting substantially fewer, highlighting a critical gap in documentation of subjective symptoms. This disparity aligns with pediatric oncology trends and emphasizes the need for patient‐reported outcomes (PROs) in routine care. ^21^ , ^22^ Overall, results indicated children from disadvantaged areas, rural regions, and Appalachian communities report higher symptom burdens.
Appalachian children reported and were reported to have higher symptom burdens than non‐Appalachian children. This disparity may reflect unique challenges faced by families in this region, including limited access to specialized health care services, cultural differences in symptom expression and reporting, and higher rates of poverty and chronic health conditions. ^23^ , ^24^ Furthermore, providers’ higher symptom reporting for children in rural and underserved areas further highlights the need for equitable resource allocation to improve symptom management and overall care quality in these populations.
The findings suggest socioeconomic disadvantage, as measured by ADI, influences caregiver symptom reporting. Caregivers in more disadvantaged neighborhoods reported significantly more child symptoms. This aligns with prior studies reporting socioeconomic stressors heighten caregivers’ sensitivity to their child's health needs, likely due to increased awareness of limited resources available to manage symptoms. ^7^ , ^25^ However, this finding diverges from research suggesting caregivers in highly disadvantaged areas may underreport symptoms due to competing demands or caregiver fatigue. ^26^ , ^27^ , ^28^ This suggests a need for future research to disentangle the complex interplay between socioeconomic stress and symptom reporting. ^29^
Health care providers reported significantly more symptoms for rural children compared to non‐rural counterparts. This supports existing literature indicating rural children with chronic illnesses often face greater symptom burdens due to barriers in accessing specialized care and supportive resources. ^30^ The higher symptom documentation by providers for children in rural areas may reflect increased clinical vigilance for these populations. However, it also contrasts with evidence suggesting that rural patients frequently experience underdiagnosis and underreporting of symptoms, potentially indicating variation in provider practices across settings. ^31^ , ^32^ , ^33^
Contrary to expectations, providers documented significantly fewer symptoms for children from MUAs compared to those in non‐MUAs; however, this difference was no longer significant in the multivariate model and may be explained by Appalachian residency. This discrepancy may reflect underreporting due to cultural norms emphasizing stoicism and reluctance to openly express distress or seek health care among Appalachian populations. ^34^ , ^35^ Additionally, provider biases and misinterpretations stemming from limited cultural competency might contribute to reduced symptom documentation, further complicating accurate assessment and management of symptom burdens. Alternatively, these results could indicate a resilience phenomenon in families from MUAs, where cultural or familial factors mitigate symptom severity or perception. ^36^ , ^37^
These findings underscore the critical role of SDOH in shaping symptom experiences and reporting in pediatric oncology. Rurality, socioeconomic disadvantage, and Appalachian residency each contribute to increased symptom burdens, with implications for both clinical care and health policy. These findings have critical implications for pediatric oncology care in rural and underserved settings. Efforts to mitigate disparities should focus on increasing access to comprehensive symptom management services, enhancing provider awareness of SDOH, enhancing health literacy across patient backgrounds, and fostering community‐based support systems. Addressing these disparities requires a multifaceted approach, including enhanced provider training on the unique needs of disadvantaged populations, greater integration of patient‐reported outcomes in routine care, and the development of targeted interventions to improve access to supportive services. Although not a solution to underreporting by providers, symptom burden in rural and medically underserved areas could be mitigated by expanding community‐based resources, while culturally tailored programs may help address the unique challenges faced by Appalachian families. These recommendations align with calls to prioritize equity in rural health care delivery. ^38^
Despite study strengths, it is important to note a few limitations. First, the variability in symptom collection children and caregivers provided self‐reports, whereas provider reports were extracted from the EMR. Notes were from multiple providers (e.g., nurses, MDs, psychosocial providers, etc.). The single institution may have introduced selection bias; however, care options for pediatric cancer in rural areas are limited, thus patients matriculate to larger hospitals. Additionally, this data is cross‐sectional and primarily consists of White, middle‐ or upper‐class participants, so results are not widely generalizable.
These findings highlight the significant impact of social determinants of health (SDOH) on symptom experiences and reporting in pediatric oncology, particularly among children in rural, socioeconomically disadvantaged, and Appalachian regions. These populations experience greater symptom burdens, with disparities most pronounced in health care provider reports, suggesting systemic barriers tied to geographic isolation and socioeconomic disadvantage complicating symptom recognition and management. Addressing these inequities requires a multifaceted approach, including enhanced access to comprehensive symptom management services through culturally tailored interventions for Appalachian families, and community‐based support systems. Provider training to recognize the influence of SDOH, along with the routine integration of patient‐reported outcomes (PROs), can improve symptom recognition and care quality. These strategies underscore the critical need for equity‐focused policies and interventions to mitigate structural barriers and improve outcomes for vulnerable pediatric oncology patients in rural and underserved regions.
The authors declare no conflicts of interest.