Barriers seen in accessing specialty care for CF patients: Study

Affordability concerns, fear of addiction highlighted in new survey

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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For people with cystic fibrosis (CF), key barriers to getting specialty care include concerns about addiction and affordability, according to a new survey of clinicians.

In fact, more than one-third of respondents cited difficulties for CF patients in accessing specialists and issues with insurance and treatment costs.

“In this study, challenges to optimal CF symptom management included fear of addiction to controlled medications, insufficient trust between specialties, lack of available specialists to manage CF symptoms, and worry about the affordability of specialist-level symptom management care,” the researchers wrote.

Potential solutions to help address these problems may include “building trust through collaboration, education among specialists, non-pharmacological approaches, and the creation of clinical care guidelines for symptom management in CF,” they said.

The study, “Clinician perspectives on barriers and solutions to symptom management in cystic fibrosis,” was published in the Journal of Cystic Fibrosis.

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More specialty care needed in CF, clinicians say

Managing symptoms in CF can be a complex process, often involving a combination of medications and lifestyle adjustments. In many instances, it can be helpful for patients who are struggling with a particular symptom to get care from a specialist for that issue. For example, pain specialists can help patients who are dealing with pain — abdominal pain is a common symptom for many patients — while mental health experts can aid those with psychological challenges, and so forth.

The CF Foundation, a patient advocacy organization, recommends that clinicians treating people with CF should refer their patients to an appropriate specialist any time the patients’ needs go beyond the expertise of the healthcare provider. However, in day-to-day clinical practice, there may be obstacles that prevent patients from getting specialist care.

Now, researchers in the U.S. conducted a survey of clinicians with an aim of better understanding these obstacles. Their goal: to create strategies to help patients better access needed care.

“This study explored challenges and potential solutions for symptom management in CF from the clinician perspective,” the team wrote.

The survey, which contained both open-ended and closed-ended portions, was answered by 146 clinicians, most of whom practiced at a CF specialty center. Closed-ended questions offer respondents a limited set of responses to choose from, while open-ended queries allow participants to expand on their answers.

Nearly two-thirds of the respondents (65%) expressed a desire to have more consultations for patients with mental health experts. Many also expressed a desire to consult with pain specialists or with experts in palliative care, which is a broad branch of medicine that aims to maximize comfort for patients who are living with an illness or medical condition and their families.

The most commonly cited concern about symptom management was the use of controlled substances, particularly opioids that can be used to manage pain, but have a high potential for addiction. One suggested solution for this was to pursue other evidence-based strategies for reducing chronic pain, such as psychotherapy, that don’t carry such high risks.

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One idea: Adding specialty care providers to CF clinics

Other common concerns included specialty care being not available and/or not affordable — particularly for mental heath care that often is not covered by health insurance providers in the U.S.

“It is unsurprising that clinicians cited financial and insurance barriers to care, with one clinician wishing for ‘more consistent insurance coverage for mental health and symptom management treatment,'” the researchers noted. Another clinician noted that, in many cases, insurers don’t cover non-opioid pain treatments, which can cause further complications with concerns about addiction risk.

Distrust between clinicians also was highlighted as a barrier to getting specialty care. In particular, many CF providers were hesitant to refer their patients to non-CF specialists owing to concerns that these clinicians might not have needed expertise with cystic fibrosis to properly care for the patient. At the same time, many clinicians worried that they might not have the time or expertise to give their patients the best care possible.

To address these issues, clinicians highlighted the importance of having a multidisciplinary CF care team with many kinds of different specialists to provide needed care. Creating guidelines for inter-specialty symptom management was another suggested solution.

While expertise and bias may be improved through education, lack of time to address symptoms may require either co-location of symptom management specialists in CF clinic or policy changes to increase the affordability and availability of specialist-level symptom management.

Collectively, these results highlight areas where clinicians and policymakers can work to improve care for people with CF, the researchers concluded.

“While expertise and bias may be improved through education, lack of time to address symptoms may require either co-location of symptom management specialists in CF clinic or policy changes to increase the affordability and availability of specialist-level symptom management,” they wrote.