Abstract
Background
Specialty care is a critical component of the healthcare system in the United States (US). Despite the frequency and importance of specialty referrals, disparities accessing specialty care have been reported across geographic regions and sociodemographic groups in the US.
Methods
The purpose of this study is to help inform health policy and practical solutions for improving access to specialty care in the US. We examined patients’ perspectives and experiences regarding access to specialty care for themselves and family members across 5 specialty areas (oncology, neurology, ophthalmology, endocrinology, and other specialty). Data for access to care were collected from the RAND American Life Panel, a nationally representative probability-based panel of 6,000 participants who are regularly interviewed over the internet.
Results
The survey population consisted of 2,137 adults, with a specialist referral recommended for 1,391 respondents (65%). The mean age of the population was 59.4 years, 23.0% were rural dwellers, 57.6% were female, 80.8% were White, 59.4% were married or living with a partner, and 85.4% were in good health. Approximately one-third (28%) of the US population experienced a barrier accessing a care specialist (oncologist, neurologist, ophthalmologist, endocrinologist, or other specialist) for themselves or for their families in 2021. Differences in access to specialty care were observed between US census regions. Difficulty accessing specialty care differed according to sociodemographic groups; a greater percentage of respondents who were < 65 years, women, or BIPOC (Black, Indigenous, and people of color) experienced a problem accessing a specialist. Numerous barriers were identified that limited access to specialty care in the overall US population, with difficulty getting an appointment and long wait times being identified as primary barriers.
Conclusions
Patient access to specialty care may be further complicated by patient-specific compounding factors including the number of specialty referrals, insurance providers, and barriers.
Supplementary Information
The online version contains supplementary material available at 10.1186/s12913-024-11921-0.
Keywords: Specialty care, Access, Barriers, United States, Disparities, Patterns, Sociodemographic
Background
Specialty care is a critical component of comprehensive patient care in the United States (US). More than one-third of Americans are referred to a specialist each year and having access to specialty care is associated with lower hospitalization and mortality rates [1, 2]. Despite the frequency and importance of referrals, there are disparities accessing specialty care across geographic regions and sociodemographic groups in the United States [3–7]. Having an understanding of the patterns, resources, and social determinants associated with access to specialty care is imperative for informing healthcare policy and practice solutions aimed at improving specialty care access [8].
By using data collected from the nationally representative RAND American Life Panel, the current study sought to identify barriers in access to a care specialist for respondents themselves or for their family members in 2021. We then examined whether there were variations in access to specialty care between US census regions. Lastly, we identified individual patient factors that predict access to specialty care and national estimates of barriers to access to specialty care by patient subgroups. The purpose of this study is to help inform health policy and practical solutions for improving access to specialty care in the United States.
Study data and methods
Data on access to care were collected from the RAND American Life Panel, a nationally representative probability-based panel of 6,000 participants who are regularly interviewed over the internet. Data were captured between July 14, 2021, and August 2, 2021, and this is the first time that these data are being published. All panel members provided informed consent before participating in the panel. Participants responded to 3 sequential questions regarding specialty care access in reference to themselves and/or a family member:
1) In the past 12 months, did you or a doctor think that you or a family member needed care from a specialist? Which of the following medical specialists (oncologist, neurologist, ophthalmologist, endocrinologist, other) have you or a family member been referred to?; 2) In the past 12 months, how much of a problem, if any, was it to see the specialist(s) that you or a family member needed to see (not a problem, small problem, or a big problem); and 3) What type of difficulties did you or a family member experience? (see Fig. 1 for response options). Responses were used to identify patients in need of a specialty consult (from a doctor referral or self-identified), those who experienced a problem seeing a specialist, and to identify the type of problem they encountered.
Fig. 1.
Barriers limiting access to specialty care in the United States
Patient-level variables were also examined and included health status (excellent, very good, good, fair, poor), sociodemographic variables (age, sex, race, rural vs. urban, marital/partner status), and insurance provider (Medicare, Medicaid, other government insurance providers, employee sponsored, other). Weighted estimates for the US population were calculated for each sociodemographic variable and the 9 census regions (East North Central, East South Central, Middle Atlantic, Mountain, New England, Pacific, South Atlantic, West North Central, West South Central). All calculated values were analyzed descriptively.
Study results
US population sample
Among the 2,137 adults (> 18 years of age) surveyed, 1,391 respondents (65%) either self-reported or were recommended by a doctor to seek a specialty referral either for themselves or a family member. The mean age was 59.4 years, 57.6% were female, 80.8% were White, 59.4% were married or living with a partner, 85.4% were in good health, and 23.0% of respondents were rural dwellers. Employer-sponsored insurance was the most frequent insurance provider among respondents, followed by Medicare (Supplemental Table 1).
Rates of specialty referral
The highest rate of specialty referral was for “other specialty” referrals followed by ophthalmology, regardless of sociodemographic group (Table 1).
Table 1.
Sociodemographic characteristics of the US population with a recommended referral for specialty care
| Specialty | Referral | Weighted Mean (SE) | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Overall | Age < 65 y | Age ≥ 65 y | Rural | BIPOC | Female |
Married/ With Partner |
In Good Health | ||
| Other specialty | Self | 26.9% (2.4) | 24.8% (3.0) | 34.9% (2.4)** | 28.0% (6.9) | 22.8% (4.4) | 26.2% (2.4) | 25.8% (3.1) | 21.1% (2.0)* |
| Family | 21.0% (1.9) | 21.1% (2.4) | 20.4% (2.1) | 18.2% (3.2) | 14.7% (3.9) | 22.7% (2.4) | 24.3% (2.3)* | 21.4% (2.0) | |
| Ophthalmology | Self | 12.8% (1.4) | 10.5% (1.7) | 21.0% (1.8)*** | 8.9% (1.7)* | 9.9% (1.9) | 15.2% (1.6) | 12.5% (1.9) | 12.8% (1.7) |
| Family | 15.5% (1.6) | 16.3% (2.0) | 12.8% (1.7) | 13.7% (3.0) | 12.3% (2.4) | 17.1% (1.9) | 20.2% (2.3)*** | 16.3% (2.0) | |
| Endocrinology | Self | 7.2% (1.0) | 7.0% (1.2) | 8.0% (1.4) | 5.3% (1.3) | 7.7% (1.7) | 7.8% (1.4) | 7.3% (1.2) | 6.1% (1.0)** |
| Family | 10.6% (1.2) | 10.9% (1.5) | 9.5% (1.7) | 10.4% (2.8) | 11.0% (2.2) | 11.2% (1.4) | 12.61% (1.7)* | 10.5% (1.3) | |
| Neurology | Self | 5.5% (1.1) | 5.3% (1.3) | 6.2% (1.2) | 3.7% (1.1) | 2.9% (0.8)* | 5.5% (0.9) | 4.1% (0.7) | 4.2% (0.8)* |
| Family | 9.8% (1.4) | 10.8% (1.7) | 6.2% (1.1)* | 7.5% (1.8) | 7.7% (2.3) | 9.6% (1.3) | 10.6% (1.6) | 8.1% (1.0) | |
| Oncology | Self | 3.9% (0.6) | 3.0% (0.6) | 7.3% (1.2)** | 3.0% (0.8) | 3.7% (1.2) | 4.4% (0.7) | 4.1% (0.7) | 3.0% (0.5)* |
| Family | 10.2% (1.4) | 10.9% (1.4) | 7.8% (1.2) | 10.0% (2.4) | 10.0% (2.2) | 10.8% (1.6) | 10.8% (1.4) | 9.9% (1.4) | |
Comparisons: age < 65 y vs age ≥ 65 y; rural vs nonrural; BIPOC vs White; female vs male; married/with partner vs divorced/single/widowed; good health vs fair/poor health
BIPOC Black, Indigenous, and people of color, SE Standard error
*P < 0.05
**P < 0.01
***P < 0.001 (chi square Rao-Scott adjustment)
Difficulty seeing a specialist
Approximately one-third of the US population (28%, n = 389) experienced a problem accessing a specialist in 2021 for themselves or their families. For 6.3% and 10.0% of the US population, accessing a specialist was a big problem for themselves or a family member, respectively (Fig. 2). A greater percentage of respondents who were < 65 years of age, women, and Black, Indigenous, and people of color (BIPOC) experienced a problem accessing a specialist; respondents > 65 years of age reported the least difficulty (Fig. 2).
Fig. 2.
Percentage of the US population experiencing a problem accessing a recommended specialist in 2021. BIPOC, Black, Indigenous, and people of color
Differences in access to specialty care were observed between the US census regions (Fig. 3). Residents of the New England and West North Central regions had the lowest rate and residents of the Pacific regions had the highest rate of difficulty accessing specialty care for themselves or for their families. The degree of difficulty accessing specialty care was also variable according to census region (Table 2). The percentage of the US population experiencing a big problem accessing a specialist for themselves ranged from 2.3% in the West North Central region to 9.9% in the West South Central region and for their families ranged from 3.2% in the New England region to 13.6% in the Pacific region.
Fig. 3.
Percentage of the US population reporting a problem accessing specialty care across census regions in 2021
Table 2.
Percentage of US respondents experiencing a big, small, or no problem accessing a recommended specialist across census regions
| Extent of Problem | Referral | Weighted Mean (SE) | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| East North Central | East South Central | Middle Atlantic | Mountain | New England | Pacific | South Atlantic | West North Central | West South Central | ||
| Big problem | Self | 3.4% (1.4) | 9.1% (4.6) | 5.3% (2.2) | 6.4% (2.5) | 3.7% (1.9) | 8.3% (3.4) | 6.8% (2.6) | 2.3% (1.9) | 9.9% (3.7) |
| Family | 12.1% (5.4) | 7.2% (4.5) | 7.1% (3.5) | 6.3% (2.0) | 3.2% (1.8) | 13.6% (4.0) | 12.2% (4.1) | 13.0% (6.2) | 11.2% (4.3) | |
| Small problem | Self | 19.7% (6.5) | 18.4% (6.7) | 31.1% (9.0) | 21.0% (4.6) | 11.0% (5.4) | 26.3% (4.6) | 18.9% (5.1) | 17.0% (6.2) | 17.7% (4.6) |
| Family | 24.5% (6.1) | 24.9% (6.6) | 34.8% (9.6) | 29.5% (7.1) | 20.6% (10.4) | 23.1% (4.3) | 15.6% (3.8) | 4.7% (1.9) | 27.4% (7.1) | |
| Not a problem | Self | 76.9% (6.5) | 72.6% (7.6) | 63.6% (9.4) | 72.6% (5.1) | 85.3% (6.2) | 65.5% (5.1) | 74.3% (5.6) | 80.7% (6.5) | 72.4% (5.7) |
| Family | 63.4% (7.1) | 67.8% (7.5) | 58.2% (10.1) | 64.1% (6.9) | 76.3% (10.8) | 63.3% (5.2) | 72.3% (5.5) | 82.3% (6.4) | 61.4% (7.2) | |
SE Standard error
Barriers and other factors limiting access to specialty care
A number of barriers were identified that limited access to specialty care in the previous 12 months in this US population (Fig. 1). The following top 5 barriers were identified as limiting access to specialty care: 1) difficulty getting an appointment, 2) waiting too long for an appointment, 3) difficulty with costs/affordability, 4) appointments being cancelled by the specialist, and 5) personal/family responsibilities.
Although respondents’ geographic location and sociodemographic characteristics appear to influence the degree of difficulty accessing a specialist, respondents may have had more than one specialty referral. Indeed, 18.8% (n = 402) of respondents reported multiple referrals (Fig. 4), with 0.2% (n = 5) of respondents reporting up to 5 specialty referrals for themselves or a family member (Supplemental Table 2).
Fig. 4.
Number of specialty referrals, insurance providers, and barriers accessing specialty care
Most respondents also reported having at least one insurance provider and facing multiple barriers when trying to access a specialist. Among respondents, 30.8% (n = 585) reported having 2–4 insurance providers, 27.8% (n = 529) reported having 2 insurance providers, 2.6% (n = 49) reported having 3 insurance providers, and 0.4% (n = 7) reported having up to 4 different insurance providers (Supplemental Table 3). A small percentage of respondents reported not having any insurance providers (4.2%). Of those reporting difficulty accessing a specialist, 46.3% (n = 265) of respondents experienced more than 1 barrier (Supplemental Table 4). Respondents self-reported experiencing from 2 (16.0%, n = 92) up to 11 barriers (1.2%, n = 7).
Discussion
The results of this study advance the understanding of the barriers and factors that contribute to difficulty accessing specialty care in the United States. In 2021, approximately one-third of the US population experienced a problem accessing a specialist for themselves or their families. Differences in access to specialty care were observed across census regions and socioeconomic characteristics. Respondents ≥ 65 years of age reported the least difficulty accessing a specialist; rates of difficulty accessing a specialist were higher among respondents who were < 65 years of age, women, or BIPOC. We identified specific barriers experienced by patients when seeking specialty care and provide evidence that patient-specific compounding factors such as the number of referrals and insurance providers may further complicate access to specialty care.
Overall, the highest rate of specialty referral in the US population was for other specialty, followed by ophthalmology. The other specialty category encompassed therapeutic areas such as cardiology, dermatology, otorhinolaryngology, gastroenterology, and orthopedics, for which previous studies have demonstrated increasing trends in patients seeking care for symptoms in these specialty areas in the United States [9, 10]. In the current study, we chose to examine patients’ perspectives and experiences regarding access to specialty care for themselves and family members across oncology, neurology, ophthalmology, endocrinology, and other specialties. First, we surveyed this limited range of specialty groups because we were limited in the number of options we could offer in the RAND American Life Panel survey as a requirement of Omnibus participation. Second, this study is part of a larger project focused on access to specialty care involving multiple studies; therefore, the specialty groups we examined are consistent with the specialties and health conditions examined in the other studies included in the large research project [10, 11]. Our study also added endocrinology as a specialty because of its key connection to diabetes care.
Previous research has demonstrated that patients who are younger than 55 years, women, and BIPOC experience a greater number of barriers when accessing healthcare in the United States [12]. Our findings build upon these results by providing evidence that individuals who are < 65 years, women, or BIPOC also more frequently reported experiencing a problem accessing a specialist, suggesting that these sociodemographic characteristics may influence not only access to primary healthcare but also specialty care.
Several recent studies have also shown that US patients’ geographic location can influence access to specialty care. Although it is well recognized that patients residing in rural areas experience greater difficulty accessing primary and specialty healthcare [2, 5, 7], the results of our study demonstrate that difficulty accessing a specialist was reported most frequently in respondents residing in the Middle Atlantic and Pacific regions. While these areas are associated with higher rates of specialty referral compared with other regions in the United States, rates of disease and risk factor prevalence are not higher compared with other regions [3]. This could suggest that specialist demand in densely populated areas may serve as a barrier limiting access to specialty care. This would be consistent with our findings that the most common barriers experienced when seeking specialty care were difficulty getting an appointment and long wait times for appointments, which suggests that resources may be insufficient to support the high demand for specialty care in these areas.
The number of patient-specific referrals, health insurance providers, and barriers could further exacerbate difficulties accessing specialty care in the United States. Approximately half of respondents had more than 1 referral to a specialist and experienced more than 1 barrier when trying to access a specialist, and approximately one-third of respondents had more than one insurance provider. Multiple patient-specific referrals, insurance providers, and barriers could indicate high need, high cost (HNHC) patients—particularly among those with multiple cross-specialty referrals [13, 14]. A better understanding of HNHC patients is critical for meeting healthcare needs and ensuring access among this population. Additionally, it is important to note that 4.2% of respondents reported having no insurance providers. It is well known that inadequate health insurance coverage in the United States is a large barrier to health care access [15].
In the present study we determined that cost and affordability of specialty care was the third most common barrier reported, suggesting that the cost of multiple specialty care appointments may further limit HNHC patient access. Additionally, coordinated care between physicians is critical for patient outcomes and multiple specialty consultations may increase the likelihood of fragmented patient care for HNHC patients [16]. Having multiple insurance providers also means having to navigate claims through separate policies; as a result, patients may experience longer wait times to receive reimbursements and are faced with an increased risk of input errors and denied coverage, all of which may lead to problems accessing specialty care. Together, an increased number of referrals, insurance providers, and barriers preventing access to specialty care could heighten the risk of incomplete referrals and patients, particularly those who are HNHC, not getting the care they need. Future research should investigate how the number of patient-specific referrals, insurance providers, and barriers influences access to care among HNHC patients.
Limitations
Our study had several limitations. We were unable to rule out whether the results were subject to recall bias, an inherent limitation to data collection through surveys. Among the study population, a high proportion of respondents identified as White (80.8%), and according to US census data, 75.3% of the current US population are White alone [17]. Because surveys cannot reach all population members, RAND uses a two-step weighting algorithm to weight the American Life Panel to national demographic distributions from the U.S. Current Population Survey using a ranking procedure to ensure the survey sample is generalizable to the national population [18]. We chose the RAND American Life Panel because it uses these methods to generate nationally representative measures. We also examined the BIPOC population to determine the percentage of the US BIPOC population experiencing a problem accessing a recommended specialist in 2021, helping to understand the barriers to access to care among this population. Further studies are needed to examine the barriers that the BIPOC population experienced. Additionally, given the timeframe for data collection, access to care may have been affected by the COVID-19 pandemic.
Conclusion
In 2021, approximately one-third of the US population experienced a problem accessing a specialist for themselves or for their families, with differences in access to care according to geographical location and sociodemographic factors. This investigation provides a greater understanding of patient factors and national estimates of specialty care access, which can help inform health policy and practical solutions for improving access to specialty care in the United States. Further investigation is warranted to determine what extent differences in access to specialty care affect patients’ health outcomes.
Supplementary Information
Acknowledgements
Medical writing and editing services were provided by Cassidy Richardson, PhD, Susan Bartko-Winters, PhD, and Esther Tazartes, MS, of the Global Outcomes Group.
Abbreviations
- HNHC
High need, high cost
- US
United States
Kimberly Jinnett
Dr. Jinnett was an employee of Genentech when this manuscript was conceived and drafted.
Authors’ contributions
R.S. and K.J. analyzed qualitative data and made major contributions to writing the manuscript and were core implementation team members.
Funding
Research, manuscript development, and medical writing support were funded by Genentech, a Roche company.
Data availability
Public versions of RAND American Life Panel data (deidentified) are available at: https://www.rand.org/education-and-labor/survey-panels/alp/data-access.html.
Declarations
Ethics approval and consent to participate
All data collection and survey protocols were approved by RAND’s Human Subjects Protection Committee, which serves as RAND's Institutional Review Board. All panel members provided informed consent before participating in the panel.
Consent for publication
Not applicable.
Competing interests
The authors are employees of Genentech and own Genentech stock. KJ was an employee of Genentech during development of this manuscript.
Footnotes
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
Public versions of RAND American Life Panel data (deidentified) are available at: https://www.rand.org/education-and-labor/survey-panels/alp/data-access.html.