A Pilot of a Telehealth-Hospice Transition Intervention for Children and Young Adults with Cancer.

BACKGROUND AND AIMS: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice collaboration. This pilot examines the impact of three coordinated telehealth visits on these outcomes. METHODS: This is a prospective pilot study of 0-29-year-old patients with cancer initiating hospice care between 2021-2023. Adult patients, caregivers, oncology and palliative care clinicians, hospice nurses and administrators were surveyed about feasibility and acceptability with telehealth (Technology Acceptance Model 2) after first and third telehealth visits. Hospice satisfaction (Consumer Assessment of Healthcare Providers and Systems) was completed by caregivers after visit 3 and during bereavement. Healthcare professionals completed the Assessment of Interprofessional Team Collaboration Scale II (AITCS-II). Survey responses were summarized and differences in scores were analyzed. RESULTS: Of 40 eligible patients, 24 enrolled, 19 completed visit 1, and 13 completed visit 3. Fourteen caregivers and two adult patients completed visit 1 surveys; nine caregivers and two adult patients completed visit 3 surveys. Participants highly rated telehealth acceptability after visit 1 (Median: 4.5, IQR: 4.0-4.7) and 3 (Median: 4.4, IQR: 4.0-4.7). Hospice services were rated as highly satisfactory at visit 3 (Median: 4.0, IQR: 3.7-4.0) and during bereavement (Median: 3.7, IQR: 3.5-4.0). Healthcare professionals (n = 85 surveys) reported excellent interprofessional collaboration (Hospital clinicians median: 99/115 and hospice teams 111/115). CONCLUSIONS: Participants found coordinated telehealth visits to be feasible, acceptable, and satisfactory. Telehealth may be utilized as an acceptable alternative to clinic visits and fosters hospital-hospice collaboration.

Palliative Care Across the Spectrum of Heart Failure.

Persons with heart failure (HF) often suffer from poor symptom control, decreased quality of life, and poor communication with their health care providers. These needs are particularly acute in advanced HF, a leading cause of death in the United States. Palliative care, when offered alongside HF disease management, offers improved symptom control, quality of life, communication, and caregiver satisfaction as well as reduced caregiver anxiety. The dynamic nature of the clinical trajectory of HF presents distinct symptom patterns, changing functional status, and uncertainty, which requires an adaptive, dynamic model of palliative care delivery. Due to a limited specialty-trained palliative care workforce, patients and their caregivers often cannot access these benefits, especially in the community. To meet these needs, new models are required that are better informed by high-quality data, engage a range of health care providers in primary palliative care principles, and have clear triggers for specialty palliative care engagement, with specific palliative interventions tailored to patient's illness trajectory and changing needs.

Symptoms and quality of life in adults with cystic fibrosis: A cross-sectional analysis of the InSPIRe:CF trial.

BACKGROUND: People living with cystic fibrosis (CF) experience a high symptom burden. Due to the changing landscape of CF in the era of modulator therapy, we sought to examine the epidemiology of symptoms and their association with quality of life, to help CF clinicians improve symptom screening in clinic. METHODS: Using baseline data from a trial of specialist palliative care in adults with CF, we examined symptom prevalence, distress, and association with quality of life (measured with the Functional Assessment of Chronic Illness Therapy Total Score). RESULTS: Among 262 participants, median age was 33, and 78% were on modulator therapy. The most common symptoms were lack of energy (n = 194, 74%) and cough (190, 73%), whereas the most distressing were difficulty sleeping (range 0-4, mean 2.19, SD 1.15) and pain (mean 2.04, SD 1.1). The symptoms that impaired quality of life the most were extrapulmonary: lack of energy (average quality of life score -29.8, 95% CI -36.8 to -22.8), feeling sad (-29.8, 95% CI -35.6 to -23.9) and worrying (-28.7, 95% CI -34.9 to -22.5). CONCLUSIONS: The symptoms that were associated with the lowest quality of life were extrapulmonary. CF clinicians may consider screening for common symptoms that affect quality of life the most (lack of energy, worrying, difficulty sleeping, feeling irritable, pain, and shortness of breath). These symptoms may identify people living with CF who are most at risk for a decreased quality of life and may benefit from additional support.

Racial Differences in Palliative Care Use in Heart Failure Decedents.

BACKGROUND: Minoritized individuals experience greater heart failure (HF) incidence and mortality rates, yet racial disparities in palliative care (PC) in HF are unknown. METHODS: This retrospective study used electronic medical records to identify adults who were hospitalized at an academic health system and died due to HF between 2012 and 2018. Using multivariable logistic regression, we examined associations between decedents' characteristics and PC consultations (PCCs). RESULTS: Of 1987 decedents, 45.8% (n = 911) received PCCs. Black decedents had 60% greater odds of receiving PCCs (OR = 1.60; 95% CI = 1.21-2.11) than whites. Median time from PCC to death was shorter among white than Black decedents (31.2 vs 51.5 days; P = .001). Mean age at death was younger among Black than white decedents (71.3 [14.8] vs 81.8 [12.3]; P < .001) and decedents of "other" races (71.3 [14.8] vs. 80.3 [10.4]; P = .001). Black decedents were more likely than whites to receive inotropes (54.4% vs 42.3%; P < .001) and to be admitted to hospitals (39.5% vs 29.7%; P < .001) and intensive care units in their last month (30.3% vs 18.3%; P < .001). CONCLUSIONS: Findings suggest greater recognition of palliative-care needs among Black individuals with HF; however, most referrals to PC occur late in the disease trajectory.

Proactive Care-Seeking Strategies Among Adults Aging Solo With Early Dementia: A Qualitative Study.

OBJECTIVES: People living with dementia need increasing care over time, but 1 in 3 adults with cognitive impairment lives alone. The goal of this study was to explore the self-identified strengths and resources for future care needs of adults aging solo with early dementia. METHODS: Semistructured interviews with 15 adults not living with a partner and with no children in the same state, who self-identified as having early dementia or mild cognitive impairment; hybrid inductive/deductive reflexive thematic analysis using a successful aging framework. RESULTS: Participants placed a high value on maintaining independence and expressed concerns about preserving selfhood and becoming a burden to others. These values influenced how participants appraised financial and social resources available to address future care needs and strategies to preempt or respond to needs such as transportation, help with finances, or activities of daily living. DISCUSSION: Adults without close family are heterogeneous and have variable resources available to address care needs associated with dementia progression. Common values of retaining independence and minimizing burden to others may be helpful in motivating adults aging solo to undertake planning and help-seeking early.

Criteria for Enrollment of Patients With COPD in Palliative Care Trials: A Systematic Review.

CONTEXT: Use of palliative care interventions in chronic obstructive pulmonary disease (COPD) has increased in recent years and inclusion criteria used to identify patients with COPD appropriate for palliative care vary widely. We evaluated the inclusion criteria to identify ways to improve enrollment opportunities for patients with COPD. OBJECTIVES: To determine inclusion criteria used to select patients with COPD for palliative care trials. METHODS: A systematic review was conducted to determine criteria used to select patients with COPD for palliative care randomized controlled trials. A narrative synthesis was conducted for all trials. RESULTS: Inclusion criteria were highly heterogeneous. Most studies (n = 11, 79%) used a combination of criteria to identify patients with COPD. Commonly used criteria included hospitalization for an acute exacerbation of COPD (n = 8, 57%), home supplemental oxygen use (n = 8, 57%), and spirometry values confirming COPD (n = 6, 43%). Three studies (21.4%) used Modified Medical Research Council score and two studies (21%) used physician prognosis or a performance scale. CONCLUSION: The most common criteria, a hospitalization for acute exacerbation of COPD or supplemental oxygen use at home, both have the benefit of selecting patients who have a higher symptom burden or higher healthcare utilization who might therefore benefit more from palliative care. By describing the landscape and variability of previously used inclusion criteria, this article serves as a resource for clinicians and researchers. Developing a consistent set of inclusion criteria in the future would help generate generalizable results that can be translated into clinical practice to improve the lives of patients with COPD. PROSPERO REGISTRATION NUMBER: CRD42022306752.

Factors Affecting Treatment Selection Among Patients With Hidradenitis Suppurativa.

Importance: Despite the US Food and Drug Administration's approval of adalimumab for the treatment of hidradenitis suppurativa (HS), prescription rates remain low, indicating a critical gap between evidence-based guidelines and clinical practice. Understanding the medical decision-making process that these patients use when considering biologic agents and other HS therapies may uncover opportunities for improved patient-physician communication and HS disease control. Objective: To elucidate factors that affect the medical decision-making process for patients with HS, with an emphasis on biologic therapies. Design, Setting, and Participants: Open-ended semistructured interviews were conducted with English-speaking adults with HS (aged ≥18 years) recruited from 2 dermatology clinics that are part of Emory University School of Medicine in Atlanta, Georgia. All participants had an average 7-day pain score of 1 or higher on a 0- to 10-point numeric rating scale. Surveys were conducted between November 2019 and March 2020, and data were analyzed from December 2021 to August 2022. Data collection continued until thematic saturation was reached at 21 interviews. Results: A total of 21 participants (median [IQR] age, 38.5 [27.9-43.4] years; 16 females [76%]) were included in the analysis. Almost all participants (96%) had Hurley stage II or III disease, and 15 (71%) had a history of adalimumab use. Suffering threshold, perceptions of treatment risk, treatment fatigue, disease understanding, and sources of information (included dermatologists, the internet, advertisements, and friends and loved ones) were identified as factors affecting participants' decisions to initiate new treatments for HS. Conclusions and Relevance: Results of this qualitative study suggest that mitigating misconceptions about treatment risk, identifying gaps in disease knowledge, and emphasizing early treatment to prevent scarring and disease progression may empower patients with HS to engage in treatment planning and to try new therapies.

The Scope of Practice of an Embedded Pediatric Palliative Oncology Clinic.

CONTEXT: Pediatric palliative care (PPC) improves end-of-life (EOL) outcomes for children with cancer. Though PPC visits are the 'intervention' in studies focused on EOL care, the content of PPC visits within pediatric oncology is poorly understood. OBJECTIVES: This study aimed to understand the scope of PPC practice during visits for children with cancer and their families. METHODS: This was a retrospective cohort study of patients 0-27 years with cancer seen in PPC clinic within an academic pediatric oncology center between 2017 and 2022. During each PPC visit, documenting providers chose the domains discussed or managed (goals of care, symptom management, and care coordination with respective subdomains). Data was abstracted from the electronic health record, PPC clinic database, and Cancer Registry. The differences in frequency and addressed domains were analyzed by demographics, visit type, diagnosis group, and proximity to EOL. RESULTS: Across 351 patients, 1919 outpatient PPC visits occurred. Median domains were higher in visits <90 days vs. 91+ days from EOL (12.0 vs. 10.0; p < 0.0001); pain and hospice collaboration were particularly discussed closer to EOL. Psychological symptoms like anxiety (30.7% vs. 21.1%; p < 0.001) were addressed more in follow-ups than initial visits. Compared to brain tumor or leukemia/lymphoma visits, solid tumor visits addressed more symptom management subdomains, especially pain (79.9%; p < 0.0001). CONCLUSION: The scope of PPC practice is broad and varied. Each visit encompasses many subdomains, the most common being care coordination with oncology teams and helping patients/families cope with the disease. More domains were addressed in solid tumor visits and near EOL.

Social Deprivation and End-of-Life Care Use Among Adults With Cancer.

PURPOSE: Socioeconomic differences are partially responsible for racial inequities in cancer outcomes, yet the association of area-level socioeconomic disadvantage and race with end-of-life (EOL) cancer care quality is poorly understood. METHODS: This retrospective study used electronic medical records from an academic health system to identify 33,635 adults with cancer who died between 2013 and 2019. Using multivariable logistic regression, we examined associations between decedent characteristics and EOL care, including emergency department (ED) visits, intensive care unit (ICU) stays, palliative care consultation (PCC), hospice order, and in-hospital deaths. Social deprivation index was used to measure socioeconomic disadvantages. RESULTS: Racially minoritized decedents had higher odds of ICU stay than the least deprived White decedents (eg, other race Q3: aOR, 2.06 [99% CI, 1.26 to 0.3.39]). White and Black decedents from more deprived areas had lower odds of ED visit (White Q3: aOR, 0.382 [99% CI, 0.263 to 0.556]; Black Q3: aOR, 0.566 [99% CI, 0.373 to 0.858]) than least deprived White decedents. Compared with White decedents living in least deprived areas, racially minoritized decedents had higher odds of receiving PCC and hospice order, whereas White decedents in most deprived areas had lower odds of PCC (aOR, 0.727 [99% CI, 0.592 to 0.893]) and hospice order (aOR, 0.845 [99% CI, 0.724 to 0.986]). Greater deprivation was associated with greater odds of hospital death relative to least deprived White decedents, but only among minoritized decedents (eg, Black Q4: aOR, 2.16 [99% CI, 1.82 to 2.56]). CONCLUSION: Area-level socioeconomic disadvantage is not uniformly associated with poorer EOL cancer care, with differences among decedents of different racial groups.

Feeding after congenital heart surgery: a mixed-methods study of the caregiver experience.

OBJECTIVES: Feeding difficulties after congenital heart surgery are a common concern for caregivers of children with CHD. Insight into the intricacies of their experience is lacking. With a better understanding, healthcare providers can continue to optimize the approach and support mechanisms for these families. This study will explore the psychosocial impacts on caregivers, define barriers to care, and identify areas to improve their care. STUDY DESIGN: This mixed-methods study combined semi-structured interviews with surveys. Purposive sampling targeted caregivers of a child who underwent heart surgery and was discharged with alternative enteral feeding access. A hybrid inductive-deductive methodology was used to analyse interview transcripts. Survey scores were compared to interview content for concordance. RESULTS: Fifteen interviews were conducted with socio-demographically diverse caregivers. Feeding difficulties were often identified as their greatest challenge, with the laborious feeding schedule, sleep deprivation, and tube management being common contributors. Most caregivers described feeling overwhelmed and worried. Time-intensive feeding schedules and lack of appropriate childcare options precluded caregivers' ability to work. Barriers to care included imperfect feeding education, proximity of specialist clinics, and issues with medical supply companies. Caregiver proposals for improved care addressed easing the transition home, improving emotional support mechanisms, and intensifying feeding therapy for expedited tube removal. CONCLUSION: This study describes the psychosocial toll on the caregiver, typical barriers to care, and ideas for improved provision of care. These themes and ideas can be used to advance the family-centered approach to feeding difficulties after heart surgery.

The Validity of Patient-Reported Outcome Measures of Quality of Life in Palliative Care: A Systematic Review.

Importance: A recent systematic review and meta-analysis found that palliative care was not associated with improvement in quality of life (QOL) in terminal noncancer illness. Among potential reasons for a null effect, it is unclear if patient-reported outcome measures (PROMs) measuring QOL were derived or validated among populations with advanced life-limiting illness (ALLI). Objective: To systematically review the derivation and validation of QOL PROMs from a recent meta-analysis of randomized controlled trials (RCT) of palliative care interventions in people with terminal noncancer illness. Evidence Review: EMBASE, MEDLINE, and PsycINFO were searched from inception to January 8, 2023 for primary validation studies of QOL PROMs in populations with ALLI, defined as adults with a progressive terminal condition and an estimated median survival of less than or equal to one year. The primary outcome was the proportion of PROMs that were derived or validated in ≥1 ALLI population. Findings: Twenty-one unique studies of derivation (n = 13) and validation (n = 11, 3 studies evaluated both) provided data on 9657 participants (mean age 63 years, 50% female) across 15 unique QOL PROMs and subscales. Among studies of validation, 9 were in people with cancer (n = 2289, n = 5 PROMs), 1 in neurodegenerative disease (n = 23, n = 1 PROM), and 1 with mixed diseases (n = 248, n = 1 PROM). Across 15 QOL PROMs and subscales, 47% (n = 7) were derived or validated in an ALLI population. The majority of these seven PROMs were exclusively derived or validated among people with cancer (57%, n = 4). QOL PROMs such as Quality of Life at End of Life, EuroQoL-5 Dimension 5-level, and 36-item Short Form Survey demonstrated validity in more than one terminal noncancer illness. Conclusions: Most QOL PROMs that measured the effect of palliative care on QOL in RCTs were neither derived nor validated in an ALLI population. These findings raise questions about the inferences that palliative care does not improve QOL among people with terminal noncancer illness.

Altered Symptom Perception in Children With Asthma Is Associated With Poor Childhood Opportunity and Adverse Outcomes.

BACKGROUND: Effective asthma self-management requires that children recognize their asthma symptoms when they occur. However, some children have altered symptom perception, which impairs their ability to respond to their asthma symptoms in a timely manner. OBJECTIVE: To characterize the prevalence and features of altered symptom perception in children aged 5 to 18 years. We hypothesized that children with altered symptom perception would have more features of uncontrolled asthma, more health inequity, and poorer longitudinal asthma outcomes over 12 months. METHODS: Children (N = 371) completed an outpatient research visit for clinical characterization. Altered symptom perception was defined by discordance between child responses on the 6-item Asthma Control Questionnaire and medical provider-elicited symptoms. Electronic medical records were reviewed for 12 months for the occurrence of an asthma exacerbation treated with systemic corticosteroids and an asthma exacerbation prompting an emergency department visit. RESULTS: Approximately 15% of children had altered symptom perception and their asthma features were similar to those of children with uncontrolled asthma. Children with altered symptom perception were uniquely distinguished by non-White race and more severe prior exacerbations. These children also resided in ZIP codes with the poorest childhood opportunity (ie, poorest education, health and environmental features, and socioeconomic features). Outcomes of children with altered symptom perception were equally disparate with approximately 2-fold higher odds of a future exacerbation and approximately 3-fold higher odds of an emergency department visit for asthma. CONCLUSIONS: Altered symptom perception is present in a small but significant number of children with asthma and is related to poorer childhood opportunity and other health inequities that require additional intervention.

Pulmonary Function and Quality of Life in Adults with Cystic Fibrosis.

PURPOSE: People living with cystic fibrosis (CF) experience impaired quality of life, but the extent to which pulmonary function is associated with quality of life in CF remains unclear METHODS: Using baseline data from a trial of specialist palliative care in adults with CF, we examined the association between pulmonary obstruction and quality of life (measured with the Functional Assessment of Chronic Illness Therapy Total Score). RESULTS: Among 262 participants, median age was 33, and 78% were on modulator therapy. The median quality of life score was higher in those with mild obstruction (135, IQR 110-156) compared to moderate (125, IQR 109-146) and severe obstruction (120, IQR 106-136). In an unadjusted model, we observed a non-significant trend toward lower quality of life with increased obstruction-compared to participants with mild obstruction, those with moderate obstruction had quality of life score 7.46 points lower (95% CI -15.03 to 0.10) and those with severe obstruction had a score 9.98 points lower (95% CI -21.76 to 1.80). However, this association was no longer statistically significant in the adjusted model, which may reflect confounding due to sex, age, BMI, and modulator therapy. Comorbidities (depression and anxiety) and social determinants of health (financial insecurity and education) were also associated with quality of life. CONCLUSION: Advancing our understanding of patient-centered markers of quality of life, rather than focusing on pulmonary function alone, may help identify novel interventions to improve quality of life in this patient population.

Decision support training for advanced cancer family caregivers: Study protocol for the CASCADE factorial trial.

BACKGROUND: Patients with advanced cancer face numerous decisions when diagnosed and often receive decision support from family caregivers. The CASCADE (CAre Supporters Coached to be Adept DEcision partners) factorial trial intervention aims to train caregivers in skills to provide effective decision support to patients and identify most effective intervention components. METHODS: This is a 2-site, single-blind, 24 factorial trial to test components of the CASCADE decision support training intervention for family caregivers of patients with newly-diagnosed advanced cancer delivered by specially-trained, telehealth, palliative care lay coaches over 24 weeks. Family caregivers (target N = 352) are randomly assigned to one of 16 combinations of four components with two levels each: 1) psychoeducation on effective decision partnering principles (1 vs. 3 sessions); 2) decision support communication training (1 session vs. none); 3) Ottawa Decision Guide training (1 session vs. none) and 4) monthly follow-up (1 call vs. calls for 24 weeks). The primary outcome is patient-reported decisional conflict at 24 weeks. Secondary outcomes include patient distress, healthcare utilization, caregiver distress, and quality of life. Mediators and moderators (e.g., sociodemographics, decision self-efficacy, social support) will be explored between intervention components and outcomes. Results will be used to build two versions of CASCADE: one with only effective components (d ≥ 0.30) and another optimized for scalability and cost. DISCUSSION: This protocol describes the first factorial trial, informed by the multiphase optimization strategy, of a palliative care decision-support intervention for advanced cancer family caregivers and will address the field's need to identify effective components that support serious illness decision-making. TRIAL REGISTRATION: NCT04803604.

Interventions to improve outcomes for caregivers of patients with advanced cancer: a meta-analysis.

BACKGROUND: Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes. METHODS: We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and Cumulative Index to Nursing and Allied Health Literature databases from inception through June 2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning, and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD). RESULTS: Of 12 193 references identified, 56 articles reporting on 49 trials involving 8554 caregivers were eligible for analysis; 16 (33%) targeted caregivers, 19 (39%) patient-caregiver dyads, and 14 (29%) patients and their families. At 1- to 3-month follow-up, interventions had a statistically significant effect on overall QOL (SMD = 0.24, 95% confidence interval [CI] = 0.10 to 0.39); I2 = 52.0%), mental well-being (SMD = 0.14, 95% CI = 0.02 to 0.25; I2 = 0.0%), anxiety (SMD = 0.27, 95% CI = 0.06 to 0.49; I2 = 74.0%), and depression (SMD = 0.34, 95% CI = 0.16 to 0.52; I2 = 64.4) compared with standard care. In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief. CONCLUSIONS: Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health. These data support the routine provision of interventions to improve well-being in caregivers of patients with advanced cancer.

Clinician perspectives on barriers and solutions to symptom management in cystic fibrosis.

People living with cystic fibrosis (PLwCF) experience high symptom burden. 146 clinicians completed online surveys regarding barriers and solutions to symptom management between September and October 2020. The surveys contained both closed-ended and free-text entries. The symptom management specialists that CF clinicians most wished to consult included mental health (88, 65%), palliative care (59, 41%), and pain specialists (48, 33%). Barriers to symptom management included concerns about controlled substances prescribed for symptom control causing addiction and precluding transplantation, a lack of trust and collaboration among clinical specialties, a lack of symptom management specialists with CF expertise, and a worry about the affordability of specialist-level symptom management care. Potential solutions included non-pharmacological approaches, expanding access to affordable specialist symptom management care, the creation of clinical care guidelines for symptom management in CF, and having CF clinicians and symptom management specialists work alongside each other in CF clinic to build interdisciplinary trust and education.

Public Health and Palliative Care.

Meeting the needs of people at the end of life (EOL) is a public health (PH) concern, yet a PH approach has not been widely applied to EOL care. The design of hospice in the United States, with its focus on cost containment, has resulted in disparities in EOL care use and quality. Individuals with non-cancer diagnoses, minoritized individuals, individuals of lower socioeconomic status, and those who do not yet qualify for hospice are particularly disadvantaged by the existing hospice policy. New models of palliative care (both hospice and non-hospice) are needed to equitably address the burden of suffering from a serious illness.

The qualitative experiences of otolaryngologists with genetic services in pediatric hearing loss evaluation.

Genetic testing is one of the most high-yield diagnostic tests in the evaluation of pediatric sensorineural (SNHL) hearing loss, leading to a genetic diagnosis in 40-65% of patients. Previous research has focused on the utility of genetic testing in pediatric SNHL and otolaryngologists' general understanding of genetics. This qualitative study examines otolaryngologists' perceptions about facilitators and barriers when ordering genetic testing in the workup of pediatric hearing loss. Potential solutions for overcoming barriers are also explored. Eleven (N = 11) semi-structured interviews were conducted with otolaryngologists in the USA. Most participants were currently practicing in a southern, academic, urban setting and had completed a pediatric otolaryngology fellowship. Insurance was one of the main barriers to testing, and increased genetics provider accessibility was the most frequently cited solution to increase utilization of genetic services. Difficulty acquiring insurance coverage and unfamiliarity with the genetic testing process were the most common reasons otolaryngologists referred patients to genetics clinics for genetic testing, as opposed to ordering testing themselves. This study suggests that otolaryngologists recognize the importance and utility of genetic testing, but a lack of genetics-specific skills, knowledge, and resources makes it difficult for them to facilitate testing. Multidisciplinary hearing loss clinics that include genetics providers may increase the overall accessibility of genetic services.