The Patient's Journey in Obesity within the United States: An Exercise of Resilience against Disease.

Obesity is often viewed as a result of patient failure to adhere to healthy dietary intake and physical activity; however, this belief undermines the complexity of obesity as a disease. Rates of obesity have doubled for adults and quadrupled for adolescents since the 1990s. Without effective interventions to help combat this disease, patients with obesity are at increased risk for developing type 2 diabetes, heart attack, stroke, liver disease, obstructive sleep apnea, and more. Patients often go through several barriers before they are offered pharmacotherapy or bariatric surgery, even though evidence supports the use of these interventions earlier. This partially stems from the cultural barriers associated with using these therapies, but it is also related to healthcare provider bias and limited knowledge of these therapies. Finally, even when patients are offered treatment for obesity, they often run into insurance barriers that keep them from treatment. There needs to be a cultural shift to accept obesity as a disease and improve access to effective treatments sooner to help decrease the risk of health complications associated with obesity.

Perceptions of Government-Assisted Payors: A Survey and Analysis of American Shoulder and Elbow Surgeons Current Medicare, Medicare Advantage and Medicaid Practice Allocation.

INTRODUCTION: Significant discrepancy and variance exist in the United States health care system with regards to patient access to medical care based on a patient's insurance type, whether that be government-assisted or a private insurer. There are currently three major government-assisted insurance programs: Medicare, Medicare Advantage, and Medicaid, each of which have their own patient mix and regulatory processes that govern care delivery. The purpose of this study was to evaluate the current perceptions of shoulder and elbow surgeons surrounding practice patterns and barriers to access for patients whose primary insurance is a government-assisted payor. METHODS: This was a national, observational study that surveyed the American Shoulder and Elbow Surgeons (ASES) society membership. This 15-question survey assessed surgeon demographics, practice types, reimbursement models, as well as rates and trends of their access to patients with government-assisted insurance. Subgroup analysis between practice type and barriers to access for patients with one of these three government-assisted insurance were also analyzed and compared. Pearson's Chi-squared test or Fisher's exact test was used to test association between categorical responses and categorical/binary respondent characteristics. A P value < .05 was deemed statistically significant. RESULTS: A total of 257 ASES members completed the survey. Mean years in practice for respondents was 14. For Medicare patients, the most common perceived barriers were reimbursement (49%) followed by administrative burden (33%) and then implant reimbursement at the surgeon's primary surgical facility (32%). For Medicare Advantage patients the most common barrier to access was administrative burden (52%), reimbursement (50%), and the patient's ability to access peri-operative services such as physical therapy, home health etc. (40%). The most common barriers for Medicaid patients were relatively evenly distributed between reimbursement (62%), low patient engagement in their care (61%), and patient's ability to access peri-operative services (60%). CONCLUSION: Amongst members of the ASES, barriers to patient access varied by government-assisted payor. For Medicare advantage, administrative burden was largest barrier to access. Whereas for Medicare and Medicaid, reimbursement was the most significant barrier. Further investigation and understanding of these barriers to patient access are necessary to improve availability of shoulder and elbow subspecialized care to a broader population of patients insured by government-assisted payors.

Barriers to care for musculoskeletal sarcoma patients: a public health perspective.

Introduction: This study seeks to investigate the barriers to care that exist for patients presenting with sarcomas of musculoskeletal origin. Understanding the roots of delays in care for patients with musculoskeletal sarcoma is particularly important given the necessity of prompt treatment for oncologic diagnoses. Investigators reviewed relevant studies of publications reporting barriers to care in patients undergoing diagnosis and treatment of musculoskeletal tumors. Methods: A comprehensive literature search was conducted using Scopus, Embase, Web of Science, and PubMed-MEDLINE. Twenty publications were analyzed, including a total of 114,056 patients. Results: Four barrier subtypes were identified: Socioeconomic Status, Geographic Location, Healthcare Quality, Sociocultural Factors. Socioeconomic status included access to health insurance and income level. Geographic location included distance traveled by patients, access to referral centers, type of hospital system and resource-challenged environments. Healthcare quality included substandard imaging, access to healthcare resources, and healthcare utilization prior to diagnosis. Sociocultural factors included psychological states, nutrition, education and social support. Conclusion: After identifying the most significant barriers in this study, we can target specific public health issues within our community that may reduce delays in care. The assessment of barriers to care is an important first step for improving the delivery of oncologic patient care to this patient population.

A qualitative approach to understanding the drivers of unequal receipt of definitive therapy for Black men with prostate cancer in Massachusetts.

BACKGROUND: Despite mandated insurance coverage since 2006 and robust health infrastructure in urban settings with high concentrations of minority patients, race-based disparities in prostate cancer (PCa) treatment persist in Massachusetts. In this qualitative study, the authors sought to identify factors driving inequities in PCa treatment in Massachusetts. METHODS: Four hospitals offering PCa treatment in Massachusetts were selected using a case-mix approach. Purposive sampling was used to conduct semistructured interviews with hospital stakeholders. Additional interviews were conducted with representatives from grassroots organizations providing PCa education. Two study staff coded the interviews to identify major themes and recurrent patterns. RESULTS: Of the 35 informants invited, 25 participated in the study. Although national disparities in PCa outcomes were readily discussed, one half of the informants were unaware that PCa disparities existed in Massachusetts. Informants and grassroots organization representatives acknowledged that patients with PCa are willing to face transportation barriers to receive treatment from trusted and accommodating institutions. Except for chief equity officers, most health care providers lacked knowledge on accessing or using metrics regarding racial disparities in cancer outcomes. Although community outreach was recognized as a potential strategy to reduce treatment disparities and engender trust, informants were often unable to provide a clear implementation plan. CONCLUSIONS: This statewide qualitative study builds on existing quantitative data on the nature and extent of disparities. It highlights knowledge gaps in recognizing and addressing racial disparities in PCa treatment in Massachusetts. Improved provider awareness, the use of disparity metrics, and strategic community engagement may ensure equitable access to PCa treatment. PLAIN LANGUAGE SUMMARY: Despite mandated insurance and urban health care access, racial disparities in prostate cancer treatment persist in Massachusetts. This qualitative study revealed that, although national disparities were acknowledged, awareness about local disparities are lacking. Stakeholders highlighted the importance of ancillary services, including translators, rideshares, and navigators, in the delivery of care. In addition, whereas hospital stakeholders were aware of collected equity outcomes, they were unsure whether and who is monitoring equity metrics. Furthermore, stakeholders agreed that community outreach showed promise in ensuring equitable access to prostate cancer treatment. Nevertheless, most interviewed stakeholders lacked clear implementation plans.

Social and Systemic Barriers to Transition-Related Surgical Procedures for Transgender Americans.

Purpose: Transgender and gender-diverse (TGD) individuals in the United States face disproportionate barriers to health care access. This study compared characteristics of individuals who have and have not undergone gender-affirming surgery with the goal of identifying social and systemic barriers to transition-related surgery. Methods: Data were extracted from the 2015 United States Transgender Survey, a cross-sectional nonprobability sample of nearly 28,000 TGD adults. The primary outcome was having undergone gender-affirming surgery. Multivariable logistic regression models were constructed to determine correlates of receipt of gender-affirming surgery. A subgroup analysis was performed to explore differences by insurance types regarding coverage of surgical procedures and presence of in-network providers. Results: In total, 6009 (21.7%) participants underwent transition-related procedures. Increased odds of undergoing surgery were associated with older age, living in congruent gender, higher education attainment, and greater income. Decreased odds were linked with male sex assignment at birth, first recognizing TGD status at older ages, living in states without trans-protective health laws, no close transgender-knowledgeable health care provider, nonbinary status, and identifying as sexual minority. Residing in states without trans-protective health laws correlated with increased surgery denials over the previous 12-month period. Compared to White TGD individuals, TGD individuals who were Black, Latinx, or Another Race were significantly more likely to encounter health equity-related barriers to surgery. Conclusions: Gender-affirming surgery access is differentially distributed across demographic and modifiable equity-related factors amenable to interventions. Efforts are needed to address the number and geographic distribution of transgender health-competent providers, improve TGD legal protections, and increase access to health insurance for minority TGD individuals, who are disproportionately under/uninsured.

Clinician-perceived barriers to cervical cancer screening before and during the COVID-19 pandemic at three US healthcare systems.

Introduction: The COVID-19 pandemic posed serious challenges to cancer screening delivery, including cervical cancer. While the impact of the pandemic on deferred screening has been documented, less is known about how clinicians experienced barriers to screening delivery, and, in particular, the role of pre-pandemic barriers to changes reported during the pandemic. Methods: Survey of clinicians who performed ≥ 10 cervical cancer screening tests in 2019 from Mass General Brigham, Kaiser Permanente Washington, and Parkland Health, the healthcare systems participating in the Population-based Research to Optimize the Screening Process (PROSPR II) consortium (administered 10/2020-12/2020, response rate 53.7 %). Results: Prior to the pandemic, clinicians commonly noted barriers to the delivery of cervical cancer screening including lack of staff support (57.6%), interpreters (32.5%), resources to support patients with social barriers to care (61.3%), and discrimination or bias in interactions between staff and patients (31.2%). Clinicians who reported experiencing a given barrier to care before the pandemic were more likely than those who did not experience one to report worsening during the pandemic: lack of staff support (odds ratio 4.70, 95% confidence interval 2.94-7.52); lack of interpreters (8.23, 4.46-15.18); lack of resources to support patients in overcoming social barriers (7.65, 4.41-13.27); and discrimination or bias (6.73, 3.03-14.97). Conclusions: Clinicians from three health systems who deliver cervical cancer screening commonly reported barriers to care. Barriers prior to the pandemic were associated with worsening of barriers during the pandemic. Addressing barriers to cervical cancer screening may promote resilience of care delivery during the next public health emergency.

Decades Delayed in Diagnosis: Hidradenitis Suppurativa and a Review of Barriers to Care.

We present a case of a 40-year-old female seen on the inpatient general surgery service in consultation for a suspected abdominal wall abscess or seroma. The history and examination were consistent with a diagnosis of hidradenitis suppurativa. The patient had a 25-year history of similar lesions present since her teenage years, not properly investigated and diagnosed, despite presenting with symptoms in multiple clinic and hospital settings since disease onset. As an accurate diagnosis of HS is often missed or delayed for years, it is important to increase awareness and clinical recognition of this condition among providers to improve outcomes for patients with the potentially debilitating disease of HS.

The financial toxicity of postbariatric body contouring surgery: a survey study of an urban tertiary care center's patients.

BACKGROUND: Patients with obesity who undergo bariatric surgery achieve sustained weight loss but are often left with excess skin folds that cause functional and psychological deficits. To remove excess skin, patients can undergo postbariatric BCS; however, cost and lack of insurance coverage present a significant barrier for many patients. OBJECTIVES: This study aimed to characterize the financial impact of treatment on all patients who received bariatric surgery and to compare between those receiving only bariatric surgery and those with postbariatric BCS. SETTING: Email-based survey study at an urban tertiary care center. METHODS: Surveys that included the COST-FACIT were sent to patients with a history of bariatric surgery and/or post-bariatric BCS. RESULTS: One hundred and five respondents completed the survey, of which 19 reported having postbariatric BCS. Patients with postbariatric BCS had slightly higher COST scores than those receiving bariatric surgery only, but this difference was not significant (15.6 versus 17.8, P = .23). Most patients (76%) did not have an awareness of BCS or BCS cost prior to bariatric surgery, and many (68%) had more loose skin than anticipated. CONCLUSIONS: Financial toxicity was similar across all postbariatric surgery patients surveyed regardless of history of BCS. However, survey respondents noted a gap between patient education and expectations around loose skin and body contouring that can be addressed through improved presurgical counseling.

Caring for older adults with cancer in Canada: Views from healthcare providers and cancer care allies in the community.

BACKGROUND: Cancer is common and disproportionately impacts older adults. Moreover, cancer care of older adults is complex, and the current Canadian cancer care system struggles to address all of the dimensions. In this project, our goal was to understand the barriers and facilitators to caring for older adults with cancer from perspectives of healthcare professionals and cancer care allies, which included community groups, seniors' centers, and other community-based supports. METHODS: In collaboration with a patient advisory board, we conducted focus groups and interviews with multiple local healthcare professionals and cancer care allies in British Columbia, Canada. We used a descriptive qualitative approach and conducted a thematic analysis using NVivo software. RESULTS: A total of 71 participants of various disciplines and cancer care allies participated. They identified both individual and system-level barriers. Priority system-level barriers for older adults included space and staffing constraints and disconnections within healthcare systems, and between healthcare practitioners and cancer care allies. Individual-level barriers relate to the complex health states of older adults, caregiver/support person needs, and the needs of an increasingly diverse population where English may not be a first or preferable language. CONCLUSIONS: This study identified key barriers and facilitators that demonstrate aligned priorities among a diverse group of healthcare practitioners and cancer care allies. In conjunction with perspectives from patients and caregivers, these findings will inform future improvements in cancer care. Namely, we emphasize the importance of connections among health systems and community networks, given the outpatient nature of cancer care and the needs of older adults.

Challenges and limitations of clinical trials in the adolescent and young adult CNS cancer population: A systematic review.

Background: The adolescent and young adult (AYA) cancer population, aged 15-39, carries significant morbidity and mortality. Despite growing recognition of unique challenges with this age group, there has been little documentation of unmet needs in their care, trial participation, and quality of life, particularly in those with primary brain tumors. Methods: A systematic literature review of 4 databases was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. Studies included editorials, reviews, and practice guidelines on the challenges and limitations faced by the AYA population. Papers had to address CNS tumors. Results: Sixty-eight studies met the inclusion criteria. The challenges and limitations in clinical trials in the AYA population were synthesized into 11 categories: molecular heterogeneity, tumor biology, diagnostic delay, access to care, physician factors, patient factors, primary brain tumor (PBT) factors, accrual, limited trials, long term follow up, and trial design. The published papers' recommendations were categorized based on the target of the recommendation: providers, coordination of care, organizations, accrual, and trial design. The AYA cancer population was found to suffer from unique challenges and barriers to care and the construction of trials. Conclusions: The AYA CNS cancer population suffers from unique challenges and barriers to care and construction of trials that make it critical to acknowledge AYAs as a distinct patient population. In addition, AYAs with primary brain tumors are underrecognized and underreported in current literature. More studies in the AYA primary brain tumor patient population are needed to improve their care and participation in trials.

Health Care Access Barriers and Self-Reported Health Among Adolescent and Young Adult Cancer Survivors.

Purpose: Adolescents and young adult (AYA) cancer survivors (15-39 years at diagnosis) are at risk for treatment-related late effects but face barriers in accessing survivorship care. We examined the prevalence of five health care access (HCA) barriers: affordability, accessibility, availability, accommodation, and acceptability. Methods: We identified AYA survivors from the University of North Carolina (UNC) Cancer Survivorship Cohort who completed a baseline questionnaire in 2010-2016. Participants had a history of cancer, were ≥18 years of age, and receiving care at a UNC oncology clinic. The sample was restricted to AYA survivors who were interviewed ≥1 year postdiagnosis. We used modified Poisson regression to estimate prevalence ratios (PRs) for the association between HCA barriers and self-reported fair or poor health, adjusted for sociodemographic and cancer characteristics. Results: The sample included 146 AYA survivors who were a median age of 39 at the time of the survey. The majority (71%)-and 92% of non-Hispanic Black survivors-reported at least one HCA barrier, including acceptability (40%), accommodation (38%), or affordability (31%). More than one-quarter of survivors (28%) reported fair or poor health. Affordability barriers (PR: 1.89, 95% confidence interval [CI]: 1.13-3.18) and acceptability barriers (PR: 1.60, 95% CI: 0.96-2.66) were associated with a higher prevalence of fair/poor health, as were the cumulative effects of multiple HCA dimensions reported as barriers. Conclusions: Barriers across multiple HCA dimensions were prevalent and associated with worse health in AYA survivors. Findings highlight the need to better understand and target specific barriers to care for diverse AYA survivors to improve their long-term health.

Barriers to Care and Perceived Need for Mental Health Services Among Adolescent and Emerging Adult Survivors of Pediatric Brain Tumors.

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care. Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis. Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers.. Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.

Assessment of Adverse Childhood Experiences and Social Determinants of Health: A Survey of Practices in Pediatric Weight Management Programs.

Introduction: Adverse childhood experiences (ACEs) and social determinants of health (SDoH) are associated with increased incidence of pediatric obesity. Recent literature highlights an imperative need to assess ACEs and SDoH among youth and families with obesity to identify those individuals requiring targeted interventions. The primary objective of the present study was to examine the frequency, methodology, and barriers in evaluation of ACEs and SDoH within pediatric weight management programs (PWMPs). Methods: Invitations were e-mailed to a comprehensive directory of 92 PWMPs in the United States with a link to complete an electronic survey. Results: Forty-one PWMPs from 26 states completed the survey. Assessment of one or more ACEs and SDoH was common and typically took place during the initial patient visit by the psychologist or medical practitioner through unstructured conversations. Reported barriers to assessment included lack of time to assess and to follow-up, lack of clinic protocols, and inadequate referral resources. Programs offering bariatric surgery and those with embedded mental health clinicians reported fewer barriers to ACEs/SDoH referral resources, while family-based and healthy lifestyle-focused programs perceived more barriers related to insufficient support staff and time to follow-up with families. Conclusions: Most PWMPs assess a subset of ACEs and SDoH; however, approaches to assessment vary, are often unstructured, and several barriers remain to optimizing assessment and follow-up. Future research should evaluate standardized ACEs/SDoH assessment protocols, ideal workflow, and their impact on obesity treatment and related health outcomes.

Barriers to care in neovascular age-related macular degeneration: Current understanding, developments, and future directions.

Neovascular age-related macular degeneration is the advanced and irreversible stage of age-related macular degeneration, the leading cause of severe vision loss in older adults. While anti-vascular endothelial growth factor injections have been shown to preserve or improve vision quality in eyes with neovascular age-related macular degeneration, the treatment regimen can be demanding of patients and caregivers, leading to lower rates of adherence. Therefore, it is crucial that disparities and obstacles in neovascular age-related macular degeneration care are identified to improve access to treatment. Review of the current literature revealed 7 major categories of barriers: travel burden, psychological barriers, financial burden and socioeconomic status, treatment regimen, other comorbidities, provider-level barriers, and system-level barriers. We provide an overview of the major barriers to neovascular age-related macular degeneration care that have been reported, as well as gaps in research that need to be investigated further.

A qualitative exploration of the non-financial costs of cancer care for Aboriginal and Torres Strait Islander Australians.

OBJECTIVE: Knowledge is growing about cancer care and financial costs for Aboriginal and Torres Strait Islander people. However, much remains unknown about the true costs of cancer care, encompassing financial, emotional, and spiritual aspects. We aimed to explore and explain how non-financial costs affect the health-seeking behaviours of these clients. METHODS: Following Indigenous research protocols, this research was led by Aboriginal and Torres Strait Islander researchers and guided by Indigenous Hospital Liaison Officers. In-depth interviews and focus groups were conducted with 29 participants (Aboriginal and Torres Strait Islander cancer clients, their carers, and cancer-care professionals) at two Queensland public hospitals. RESULTS: Four interwoven themes encompass non-financial costs of healthcare: leaving home and family; loss of control during cancer treatment; health of the spirit; social costs. The Aboriginal relational concept of 'being held' is useful in considering client, family, and carer as central to care with the Indigenous Hospital Liaison Officer two-way interpreting between the care and client team. IMPLICATIONS FOR PUBLIC HEALTH: Framing the reasons that clients and carers have difficulty in engaging in treatment as 'costs' enables a focus on how the health system itself is implicated in the disengagement of Aboriginal and Torres Strait Islander clients from treatment.

Current Challenges and Disparities in the Delivery of Equitable Breast Cancer Care in Canada.

Recent exciting advances in the diagnosis and management of breast cancer have improved outcomes for Canadians diagnosed and living with breast cancer. However, the reach of this progress has been uneven; disparities in accessing care across Canada are increasingly being recognized and are at risk of broadening. Members of racial minority groups, economically disadvantaged individuals, or those who live in rural or remote communities have consistently been shown to experience greater challenges in accessing 'state of the art' cancer care. The Canadian context also presents unique challenges-vast geography and provincial jurisdiction of the delivery of cancer care and drug funding create significant interprovincial differences in the patient experience. In this commentary, we review the core concepts of health equity, barriers to equitable delivery of breast cancer care, populations at risk, and recommendations for the advancement of health equity in the Canadian cancer system.

Barriers of Care to Ovarian Cancer: A Scoping Review.

Ovarian cancer is a leading cause of female cancer-related deaths, but patients continue to be diagnosed late. This subjects them to disease progression and possible death due to lack of early detection, despite earlier stage detection improving survival rates by significant percentages. Early detection and access to care are closely related. However, many barriers to high-quality care exist for patients and the majority of patients do not receive recommended care according to ovarian cancer treatment guidelines. In order to improve care for ovarian cancer patients and decrease healthcare disparities in accessing equitable care, it is important to acknowledge the current gaps in patient knowledge, healthcare availability, and physician practice. This scoping review explores the available evidence on ovarian cancer to identify these barriers to care in the effective treatment of ovarian cancer. Using both inclusion and exclusion criteria, results from the initial literature search were screened by the authors. After quality assessment and screening for relevance, 10 articles were included in the final review. The following themes emerged as barriers to care: hospital and physician-patient volumes, geographic distance from care facilities, patient and physician education, and demographic factors. Many patients were found to not receive guideline adherent care due to various barriers to care, whereas guideline adherent care was independently associated with factors such as patient proximity to a high-volume hospital, White race, and higher socioeconomic status. Several areas were identified as potential for increased patient and physician education, including treatment complications and patient resources. The evidence found that certain socioeconomic groups and racial minorities are often at higher risk for guideline non-adherent care. Additionally, the evidence showed a further need for physicians and healthcare providers to be provided with resources for post-cancer treatment, follow-up, and patient education. The findings of this review will provide health experts and patients with better insight into what barriers may exist so that guideline-adherent care can be better advocated for and met.

Evaluating the childcare needs of cancer patients undergoing radiation therapy.

PURPOSE: About one-fifth of newly diagnosed cancer patients are parents to young children. These patients are at higher risk of psychosocial stress and inability to attend treatment due to having to balance their own healthcare needs with childcare duties. This study aims to explore the impact of childcare on cancer parents and elicit their perspectives on potential supports. The results could help inform the implementation of suitable childcare programs to remove this barrier in accessing care. METHODS: Patients at a large Canadian cancer treatment center were screened by oncologists for having minor children at home. Secure electronic surveys were then distributed to consenting participants. Domains surveyed included patient demographics, childcare burden, impact on treatment, and preference for childcare supports. RESULTS: The mean age of correspondents was 43.9 (range 33-54), 46 patients (92%) were female, and breast cancer was the most common primary tumor. The median number of children per correspondent was two, and their mean age was 8.4. Balancing childcare with cancer treatment had a significant impact on self-reported stress levels for most correspondents. Twenty (40%) participants had to reschedule and 7 (14%) participants missed at least one appointment due to childcare conflicts. During the COVID-19 pandemic, access to childcare resources decreased while childcare responsibilities increased. Three-quarters of correspondents reported that a flexible childcare would make it easier for them to adhere to appointment schedules. CONCLUSION: Childcare is a significant psychosocial barrier for patients accessing cancer care. Our results indicate that most parents undergoing treatment may benefit from hospital-based childcare services.

Identifying barriers to obstructive sleep-disordered breathing care: Parental perspectives.

OBJECTIVE: Despite established clinical practice guidelines for pediatric obstructive sleep-disordered breathing (SDB), disparities persist for this common condition. Few studies have investigated parental experiences about challenges faced in obtaining SDB evaluation and tonsillectomy for their children. To better understand parent-perceived barriers to treatment of childhood SDB, we administered a survey to assess parental knowledge of this condition. MATERIALS & METHODS: A cross-sectional survey was designed to be completed by parents of children diagnosed with SDB. Two validated surveys were administered: 1) Barriers to Care Questionnaire and 2) Obstructive Sleep-Disordered Breathing and Adenotonsillectomy Knowledge Scale for Parents. Logistic regression modeling was performed to assess for predictors of parental barriers to SDB care and knowledge. RESULTS: Eighty parents completed the survey. Mean patient age was 7.4 ± 4.6 years, and 48 (60%) patients were male. The survey response rate was 51%. Patient racial/ethnic categories included 48 (60.0%) non-Hispanic White, 18 (22.5%) non-Hispanic Black, and 14 (17.5%) Other. Parents reported challenges in the 'Pragmatic' domain, including appointment availability and cost of healthcare, as the most frequently described barrier to care. Adjusting for age, sex, race, and education, parents in the middle-income bracket ($26,500 - $79,500) had higher odds of reporting greater barriers to care than parents in the highest (>$79,500) income tier (OR 5.536, 95% CI 1.312-23.359, P = 0.020) and lowest income tier (<$26,500) (OR 3.920, 95% CI 1.096-14.020). Parents whose children had tonsillectomy (n = 40) answered only a mean 55.7% ± 13.3% of questions correctly on the knowledge scale. CONCLUSION: Pragmatic challenges were the most encountered barrier that parents reported in accessing SDB care. Families in the middle-income tier experienced the greatest barriers to SDB care compared to lower and higher income families. In general, parental knowledge of SDB and tonsillectomy was relatively low. These findings represent potential areas of improvement to target interventions to promote equitable care for SDB.