Retention in Care: The Good, the Bad, and the Ugly

TALES FROM THE CLINIC

-Series Editor Nidal Moukaddam, MD, PhD

In this installment of Tales From the Clinic: The Art of Psychiatry, we discuss retention in opioid use disorder (OUD) treatment. National data indicates low retention in services aiming to help those with OUD, despite increasing availability of medications and removal of systemic barriers such as the X-waiver requirement by the Consolidated Appropriations Act of 2023. Flexibility and patience are often required to help this group of patients establish care and maintain consistency.

Case Study

“Ms Morgan” is a 47-year-old woman with a history of bipolar disorder, amphetamine use disorder, and OUD, who has recently begun a treatment plan at an outpatient psychiatric clinic.

Upon first arriving for the initial visit, Ms Morgan exhibited great enthusiasm and appeared to have a friendly disposition. Throughout the visit, she remained engaged and cooperative, consistently expressing her own personal goal of obtaining and maintaining abstinence from substance use. She was eager to start treatment with buprenorphine 8 mg daily for treatment of OUD and planned to stop by the neighborhood pharmacy after the visit. In addition to her treatment, she enrolled in a research study examining the use of apps and wearable technology in predicting future drug cravings. She signed the informed consent form after asking questions and receiving profuse explanations, and cheerfully told the research team members she would love to come back for both clinical and research: “This time I am really taking care of myself.” She verbalized excitement that the observational study would pay her to participate and would cover transportation to the medical center, which would help.

By the end of the initial visit, a follow-up visit was scheduled, and Ms Morgan was informed that she would receive a reminder call or text to confirm her appointment during the following week.

As the date of the second visit neared, Ms Morgan was called several times by clinic staff to confirm her appointment, but it went straight to voicemail each time. Unfortunately, despite email reminders being sent as well, Ms Morgan did not show up for her second visit.

Two weeks had passed with multiple attempts to contact Ms Morgan. One Friday afternoon at 4:30 PM, she presented with her 11-year-old daughter as an unannounced walk-in after she had taken 3 different buses to get to the clinic. Upon arrival, she informed the treatment team that she was unable to get the buprenorphine from her nearby pharmacy, as her insurance plan did not cover it. To make matters worse, she was also unable to pay her phone bill, which was why she had not answered the previous phone calls. This led to a return to opioid and methamphetamine use, and the substance-induced paranoia made her hesitant to follow the protocol for the wearable devices from the research study. She was actively in opioid withdrawal and was experiencing intense pain, restlessness, and irritability.

The provider in the clinic was notified about Ms Morgan’s arrival, and despite acknowledgement of the barriers to care, he could not help but feel irritated that “she just decided to get high and show up right before closing for the weekend.” In addition, he explained to Ms Morgan that she was “noncompliant” and stated, “we’ll see what we can do.” Ms Morgan in return felt frustrated with the whole situation, could read the provider’s body language, and expressed that she was “being treated like an addict” and that “no one wants to help.” Before a disposition plan could be revised, Ms Morgan left the clinic and did not return.

Discussion

Low retention rates are a multifaceted and commonly occurring issue among patients with substance use disorders (SUDs), especially those diagnosed with OUD. In fact, research shows that among those receiving outpatient treatments for substance use, average dropout rates range from 30% to 50%, with dropout rates for opioid use specifically reaching as high as 75% to 85% in some cases.^1,2 Given the importance of consistent attendance and adherence to treatment plans in achieving successful outcomes in outpatient care, it is essential to identify the barriers that contribute to these low retention rates, which can be summarized under 3 main categories: psychological, socioeconomic, and systemic barriers.

Psychological Barriers

Among individuals struggling with OUD, opioids are often not the only substance being used. According to a systematic review and meta-analysis study, 59.5% of individuals with OUD have also struggled with a comorbid SUD in their lifetime, with cocaine use disorder appearing to be the most common comorbid SUD.³ Multiple SUDs are, therefore, especially challenging to treat, as a return to use of 1 substance may result in the return to use of another. Additionally, the chronic use of multiple substances, including alcohol, can result in complications of an individual's physical health, potentially leading to increased hospitalizations.⁴

In addition to these comorbid SUDs, individuals with OUD often struggle with other psychiatric diagnoses that may impair their motivation or general ability to adhere to treatment plans. Common psychiatric diagnoses associated with OUD include both mood and personality disorders and may even present differently between genders, with men being more likely to experience a comorbid personality disorder, while women tend to have an additional diagnosis of mood, anxiety, or eating disorders.⁵

Many of the personality disorders associated with OUD, such as bipolar disorde and antisocial personality disorder (ASPD), are characterized by impulsive or reckless behaviors, which often include substance use and may indicate the likelihood of a return to use. One study even found that in outpatient counselling, individuals with ASPD were more likely to drop out of treatment as compared with individuals without ASPD.⁶ Mood disorders, like major depressive disorder, and anxiety disorders, on the other hand, tend to affect motivation or avoidance behaviors.⁷ Individuals struggling with OUD and depression may find it increasingly difficult to keep up with outpatient appointments, resulting in infrequent attendance and increased feelings of guilt or shame. Similarly, those struggling with an additional anxiety disorder may exhibit avoidance behaviors and an increased potential for a return to use of OUD.⁸

Socioeconomic Barriers

Socioeconomic status (SES) refers to an individual's social and economic standing and is characterized by income, education, employment, and other factors. These factors are strong predictors of health, especially regarding opioid use, with lower SES and community SES often being associated with comorbidities and a higher OUD risk.^9,10 Lower SES may also be associated with an individual's ability to consistently obtain treatment for OUD, given transportation and child care costs and the affordability of medications and therapies.

Treatments for OUD often involve regular trips to an outpatient or methadone/buprenorphine provider. Therefore, someone seeking OUD treatment would require access to either their own car or some form of public transportation if they do not live near an outpatient clinic. While this may not be as great a barrier in urban areas where most opioid treatment programs are located within walking distance of public transit stations, individuals seeking OUD treatment outside metropolitan areas, especially those residing in rural areas, would experience significant challenges in accessing treatment services.¹¹ This lack of convenience when seeking transportation to and from treatment facilities for OUD likely impacts a patient's motivation to continue to attend appointments, thereby increasing the likelihood of return to use of opioids and/or other substances.

A notable demographic among those seeking treatment for OUD includes pregnant women or those with young children. This can add another layer of complexity to receiving care, as pregnant and parenting women will have to consider their child's well-being alongside their own. For instance, they may need to seek out affordable child care services while scheduling appointments, a task that parenting women of lower SES may find more difficult, or they may choose to prioritize their child's needs over their treatment. According to a 2024 study that interviewed women with a history of OUD, professionals in OUD treatment programs, and criminal justice professionals, these parenting-related concerns are only a few of the many barriers to receiving care for OUD. The study revealed that women's responsibilities as parents, as well as some pregnancy-related issues, often interfered with their ability to receive OUD treatment, including but not limited to child custody concerns, hesitancy of physicians to prescribe OUD medications to pregnant women, and difficulty accessing or navigating a complex health care system.¹² While women of any socioeconomic status can face these barriers to care, those from lower SES backgrounds may find it even more challenging to overcome them.

Systemic Barriers

In addition to psychological and socioeconomic barriers, the health care system may also contribute to the inadequate number of individuals receiving consistent treatment for an OUD diagnosis, despite the ongoing opioid epidemic. In fact, according to the Centers for Disease Control and Prevention, out of the 9,367,000 US adults needing treatment for OUD in 2022, only 55.2% received treatment, with just 25.1% of those receiving medications for OUD. Among those who received treatment, 60.3% identified as non-Hispanic White, 43.8% identified as non-Hispanic Black, and 45.7% identified as Hispanic or Latino, indicating a disparity among racial/ethnic groups, especially considering the fact that this disparity is also reflected in the percentage of non-White individuals that receive medication for OUD as compared with their White counterparts.^13,14 Some factors contributing to this disparity may include, but are not limited to, inadequate insurance coverage for OUD treatment and medications, limited access to OUD medications at pharmacies, and clinicians' inherent biases or beliefs regarding OUD treatment.

The standard care for OUD typically involves the use of medication in combination with counseling and behavioral therapies. However, most individuals who could benefit from medications for OUD, about 75% to 90%, do not receive them.¹⁵ One significant factor contributing to this statistic is the payment policy for OUD medication prescriptions. While federal health insurance programs like Medicare and Medicaid cover at least 1 type of OUD medication, private insurance coverage varies, often excluding methadone. Both federal and private health insurance programs also require prior authorization for higher-dose prescriptions in some states, further restricting and delaying access to necessary OUD medications. Moreover, Medicare, Medicaid, and private insurers all require cost-sharing for some treatments yet fail to adequately cover the cost of comprehensive OUD treatment, particularly Medicaid.¹⁵ Considering the negative correlation between OUD and SES, these financial barriers likely have a strong influence on OUD treatment initiation and retention.

The availability of OUD medications may also depend on whether retail pharmacies stock and dispense them. As methadone dispensation is typically restricted to licensed treatment programs, retail pharmacies are more likely to dispense buprenorphine for OUD treatment, which has only increased from 33% to 39% in the percentage of pharmacies that regularly dispense it. The availability of buprenorphine within US pharmacies even varies by state and demographic, with Black and Latinx neighborhoods experiencing a much lower likelihood of having access to buprenorphine at local retail pharmacies as opposed to White or diverse neighborhoods. Specifically, only 17.8% of pharmacies in Black neighborhoods and 16.5% in Latinx neighborhoods offer buprenorphine, whereas 45.8% of pharmacies in White neighborhoods and 30.9% in diverse neighborhoods do so.¹⁶ Therefore, even when prescribing restrictions and financial barriers are removed, patients seeking treatment for OUD may still encounter barriers when trying to obtain their prescriptions at their local pharmacies.

The innate biases and personal beliefs of physicians are an additional factor influencing the quality of care that patients with OUD receive, including whether they are offered medication for their OUD diagnosis. One study even found that stigma related to the use of therapeutic medications for OUD equated prescriptions of methadone, buprenorphine, and naltrexone to illicit substance use. This stigma surrounding the use of OUD medications leads some providers to develop a preference for abstinent treatment plans, which have proven to be significantly less effective in reducing the risk of overdose.^17,18

The stigmatization of OUD may also influence a physician's attitude and behavior towards a patient, resulting in increased dropouts from treatment. These attitudes can be reflected using stigmatizing language to describe patients, such as terms like "drug addict" or "junkie," which can follow them throughout their lives as a permanent label on their medical records.¹⁹ Viewing drug addiction as a moral failing rather than a chronic illness further demotivates patients from continuing to receive treatment and may even result in delays in emergency care.^19,20 Making changes to the way patients are referred to with descriptions like “persons with alcohol use disorder” instead of “alcoholics”; “in recovery” instead of “clean”; and “substance use” instead of “substance abuse” can have significant implications on a patient’s view of themselves. Whether they are beliefs held by health care providers or the patients themselves, the stigma surrounding OUD and OUD medications, as well as the inequitable treatment these patients may receive as a result, may negatively impact treatment retention.

Concluding Thoughts

Patients seeking treatment for substance use disorders, particularly those with OUD, experience several significant barriers to receiving the care that they need, consequently affecting their willingness and motivation to continue seeking out health care. Therefore, addressing such a multifaceted issue requires a multifaceted approach to solving it.

In Ms Morgan’s case, she faced the uphill battle of coming across psychological, systemic, and socioeconomic barriers. These factors, coupled with the treatment providers’ own stigma about those with SUDs, ultimately lead to treatment dropout, and an increased risk of lethal overdose. While the story of Ms Morgan may almost seem like a “worst case scenario” with our patients, these presentations are actually not that uncommon. Mentalization and empathizing with the patient’s perspective would have helped the provider to better see that her walk-in presentation was not from Ms Morgan being willfully noncompliant, but rather a result of an unfortunate domino-effect stemming from multiple barriers to treatment. By exercising psychological flexibility in working with those with SUDs, clinicians may have more collaborative and patient-centered approaches to improve outcomes. While some barriers can be addressed head on, we must practice some acceptance of the inevitability of certain barriers. Instead of viewing these barriers as unpleasant nuisances (which may be an understandable immediate human response), we may be best served by seeing them as an opportunity to problem-solve together with the patient, which will further facilitate their trust and bring meaningfulness and satisfaction to our work.

Ms Hamdan is a research coordinator in the Menninger Department of Psychiatry and Behavioral Sciences at Baylor College of Medicine.

Dr Avellaneda Ojeda is an associate professor in the Menninger Department of Psychiatry and Behavioral Sciences at Baylor College of Medicine.

Dr Li is an associate professor and addiction-boarded faculty at Harris Health System in the Menninger Department of Psychiatry and Behavioral Sciences at Baylor College of Medicine. He is also the director of the Harris Health Substance Addiction Treatment Program and an associate program director for the Baylor College of Medicine Addiction Fellowship Program.

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