Patient Insights: Drivers and Barriers to Specialist Care

Updated September 19th, 2022 | 5 Minute Read

For many conditions, specialists trained to understand various symptoms, triggers and treatment approaches often play an essential role and form a critical component of the chronic patient journey. It is often the specialist that most thoroughly understands chronic conditions, and knows how to use patients’ specific situations to develop an effective treatment plan.

But for a number of reasons, people with chronic conditions don’t always have access to these specialists who are attuned to their needs. Health Union’s patient journey research often shows access as a significant hurdle throughout the health journey. For example, receiving an accurate diagnosis might take months, years or even decades if patients don’t have access to individuals who thoroughly understand their condition. The inability to see a relevant specialist could lead to countless condition management concerns, including a worsening of unaddressed symptoms, a lack of awareness of appropriate treatments and an inability to refill needed prescriptions. 

Understanding not just the factors behind lack of HCP access, but also the significant physical and emotional impact it can have, creates opportunities for the healthcare industry to develop solutions that potentially bridge the access gaps that currently exist.

When people living with chronic conditions cannot access a specialist to help them manage and treat their conditions, they often rely on primary care providers (PCP), whose knowledge is more broad. This is a recurrent finding across Health Union’s large-scale, syndicated, condition-specific In America surveys – conducted regularly for all of the company’s online health communities. For example:

  • Despite the difficulty of epilepsy management, only 67% of Epilepsy In America 2022 respondents see a neurologist and only 19% see an epileptologist 
  • 64% of COPD In America 2022 respondents see a pulmonologist or COPD specialist, despite the irreversibility of the condition 
  • Only 55% of Psoriasis In America 2022 respondents see a dermatologist, who are expert in treating psoriasis and stay up to date on current treatment options; while 21% see a PCP and 15% do not regularly see an HCP at all for their psoriasis 

Digging into these findings, by listening to individuals from these communities, we’ve identified factors contributing to low access to specialists, depending on the condition.

Distance, Logistical Challenges

For some, finding a relevant specialist can be difficult due to where they live, whether it’s a rural area or a significant distance from any large medical or research facilities. Depending on how specialized or rare the condition is, people might have to invest significant time and money to see a specialist, if they choose to do so.

For example, of Myasthenia Gravis In America 2021 respondents who have never seen an MG specialist, one-third said there isn’t one in their area; of those who currently see one, 41% need to travel more than an hour. Three in 10 Macular Degeneration In America 2020 respondents said they travel at least 30 miles each way to see a retina specialist, while 6% travel more than 100 miles each way.

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Some people choose to relocate, in part to be closer to the medical care they need. Of course, traveling or relocating may be the exception rather than the rule, and this distance-related access barrier can compound both the physical and emotional impact of living with a chronic condition.

Certain specialties have a shortage of providers and therefore, HCP availability can pose another specialist access barrier or, in some cases, the perception of an access barrier. If patients need to wait a significant amount of time before they can see a specialist, it might dissuade them from bothering in the future to seek a specialist or lead them to solely rely on PCPs less trained in their condition. For example, Migraine In America 2020 survey findings reveal 43% of respondents who currently see a headache specialist and 39% who currently see a neurologist need to wait at least two months for appointments with those respective HCPs. And 13% of Atopic Dermatitis In America 2020 respondents who currently see a dermatologist avoid making appointments due to having to wait a long time for appointments.

Scheduling concerns can impact a patient at various points in their journey, including pre-diagnosis, during a flare-up and when they have relocated and are searching for a new specialist. One contributor recounts that, right after her husband was diagnosed, “our family doctor referred him to a local rheumatologist. When I called, they said it’d take 3-4 months to get in to see the doctor.”

Insurance, Cost Concerns

It has been well documented that paying for care, whether through insurance or out-of-pocket, is a significant barrier to specialist care.

For one patient opinion leader, “My healthcare was always money based: I went to doctors as I could afford them.” One patient leader, who said he “can’t afford good health insurance,” explained that he “also can’t afford to see a doctor as often as I would like or need to because of the copays and expensive costs of certain procedures.” Additionally, a patient leader discussed being “put on a payment plan with my doctor because I can’t afford the visits.”

For some, the challenge is that their insurance plan won’t cover certain specialist types or a specific specialist is out-of-network. Others simply can’t access affordable health insurance. Some might have coverage but are still burdened by out-of-pocket costs. Regardless of the situation, health insurance and cost issues can negatively impact specialist access across various conditions. For example:

  • One-fifth of COPD In America 2020 respondents said they avoid seeing an HCP, unless they absolutely need to do so, due to cost concerns; a nearly equal amount said healthcare costs have prevented them from receiving needed care.
  • Nearly a third of Migraine In America 2020 respondents who currently see either a headache specialist or a neurologist pay at least $50 per visit.

Poor Awareness of Specialist Care

While many people can’t access HCPs for a number of reasons, some might not realize a specific specialist would positively impact their care.

One patient patient leader admits that, despite knowing she had to manage her eczema, she “somehow never really considered it a serious medical condition” and would end up sticking with “the same routine I always had.” Being able to eventually communicate the severity of her symptoms led to her connecting with a specialized dermatologist.

Not being able to communicate one’s condition severity might reduce the likelihood of pursuing or being referred to specialist care. To this point, Hidradenitis Suppurativa In America 2020 respondents who currently see a dermatologist were more likely than those who don’t to be diagnosed with a severe form of the condition; at the same time, respondents who don’t see a dermatologist were more likely to not know their current stage of diagnosis.

In some cases, like for those experiencing less severe symptoms, they might feel they are already receiving the care they need from their PCP. More than a quarter of Asthma In America 2020 respondents who do not currently see a pulmonologist said they have a great relationship with their PCP but might see a specialist periodically, if needed.

Can healthcare companies play a role in mitigating access concerns?

For healthcare companies, understanding the barriers to accessing specialists, and how that  impacts people in condition communities, is the first step in developing solutions that address access gaps.

Fortunately, the evolution of technology serves as a potential opportunity for healthcare companies as they look to support patients on their health journeys. Specifically, the COVID-driven growth of virtual care approaches and telehealth has proven to be one way to mitigate some specialist access problems.

For example, nearly three-fourths of respondents – all living with chronic conditions – reported in late 2020 having at least one telehealth appointment during the COVID pandemic. Importantly, 44% of respondents said they were “extremely likely” to consider using telehealth moving forward. Additionally, more than six in 10 survey respondents who had used telehealth rated convenience as at least somewhat better than in-person office visits.Thus, telemedicine has a potential for mitigating some of the concerns people with chronic health conditions often experience around distance, scheduling and health insurance.

Engagement with Health Union Insights and Health Union’s growing portfolio of online health communities to perform Patient Journey research can offer unique insight and understanding into nuances of the journey. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.

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