Clinical insights: Preventing psychosis treatment disengagement

Abstract

Many patients with schizophrenia spectrum disorders disengage from treatment, with negative impacts on prognosis and recovery. This commentary provides an overview of common reasons underlying treatment dropout and strategies for overcoming obstacles and enhancing patient engagement. Basic clinical skills such as open-ended questions and reflective listening can be powerful tools in unmasking structural and attitudinal barriers to psychosis care.

Disengagement from psychosis care is common, with one-third of individuals living with a schizophrenia spectrum disorder disengaging from outpatient treatment over the course of illness (Kreyenbuhl et al., 2009; Solmi et al., 2018; Doyle et al., 2014). Many patients stop attending treatment unexpectedly, some even shortly after initial evaluation. Treatment interruptions in outpatient care, especially those early in the course of psychotic illness, can negatively impact prognosis and long-term functioning (Turner et al., 2009).

To provide recovery-oriented care and shorten the duration of untreated psychosis, we must improve the quality and acceptability of our intervention while also thoughtfully engaging reluctant patients in treatment. This thoughtfulness begins with curiosity: why is this individual reluctant to seek or continue psychiatric care? Below are some reasons why many individuals may avoid, discontinue, or engage only sporadically with treatment, along with potential strategies for promoting engagement in each situation.

1. Direct interference of symptoms

The positive, negative, and cognitive symptoms that are hallmarks of schizophrenia spectrum disorders (SSD) (Kahn et al., 2015) can interfere with sustained engagement in treatment across care settings. Among the most common is lack of insight into illness (or anosognosia) (Buckley et al., 2007). An individual’s level of insight may fluctuate over the disease course (Brown et al., 2020). During periods of limited insight, a lack of perceived need to engage in care can be a barrier to ongoing treatment. Lack of motivation (avolition), emotional blunting, and other negative symptoms may impede care engagement. Further, the severity and nature of an individual’s positive symptoms may directly impact engagement in care. For example, paranoia involving the treatment team may make it difficult for a patient to trust providers or the larger mental health system. Finally, both marked disorganized thinking, and cognitive deficits (e.g., difficulties with planning and prioritizing tasks) may make the logistics needed to attend appointments in-person or over telehealth exceptionally difficult for many patients without a high level of social support.

1.1. Suggested strategies to mitigate the impact of symptoms on engagement in care

Solutions for positive symptoms often depend on the nature of the delusion or other symptoms. Often the best course is not to challenge patients directly around delusional content. Instead, it can be helpful to offer empathy and leverage open-ended questions to find a middle ground that you and the patient can align around (e.g., reframing treatment goals as decreasing time spent thinking about distressing thoughts or managing the dysphoria that they cause rather than eradicating them). For patients with limited insight and marked negative symptoms, open-ended questions, reflective listening, and other motivational interviewing techniques can also help build rapport and define treatment goals. For example, asking patients about what in their lives could be improved (e.g., loneliness and unemployment) can be more productive than insisting that patients learn and use terms such as “delusions” to describe their symptoms. Connecting patients limited insight to individual or group peer support can also be a powerful strategy to aid in defining mutual treatment goals and fostering trust in care. For patients with highly disorganized thinking or cognitive symptoms, a clear, concise, and multifaceted approach to communication (e.g., using both written and verbal directions) can be helpful. Additionally, encouraging family involvement and specialized services such as case management can be paramount to helping patients with significant cognitive symptoms or disorganized thinking.

2. Structural barriers

Many risk factors for the development of an SSD are associated with early and persistent socioeconomic adversity (Radua et al., 2018). Additionally, the onset of a psychotic disorder can very often derail academic attainment and interfere with occupational functioning, resulting in socioeconomic disadvantage (Lin et al., 2022). As a result, many of our patients disengage from outpatient care due to structural barriers. For example, parking and public transportation costs may make attending appointments difficult. Many patients may also not have a reliable connection to the internet or the technological means to attend telehealth appointments. Many patients may be uninsured or underinsured, which may cause them to ration appointments or medications to meet their basic needs.

2.1. Suggested strategies to reduce structural barriers to care

Prioritize asking patients about any obstacles they foresee to accessing outpatient care and be ready to problem solve during visits. Ask directly about access to food, safe housing, and the ability to meet other basic needs. Leverage the expertise of colleagues in resource social work and case management where available. Treatment teams can also work together to compile commonly used community resources such as local transportation assistance, prescription vouchers, subsidized internet services, and other supports to mitigate the socioeconomic disadvantage faced by many of our patients living with an SSD.

3. Impact of culture on help-seeking and trust in psychiatry

Cultural factors can impact patient engagement in psychosis care in a multitude of ways. Cross-culturally, individuals from marginalized racial and ethnic groups have experienced persistent discrimination on a societal level and, more specifically, within the mental healthcare system (Harnett and Ressler, 2021). A climate in which discrimination is normalized or historically entrenched can impact patient expectations and negatively affect patient-provider relationships and healthcare utilization (Benkert et al., 2006). Further, perceived public, family, and self-stigma can all negatively impact help-seeking behavior (Clement et al., 2015). Concerns about stigma and privacy may lead patients and families to prefer help from informal supports (e.g. family, friends, and religious leaders) over formalized medical institutions (Aggarwal et al., 2020). Lastly, the majority of psychosocial interventions for psychosis is designed and studied in Western cultures and may have limited face validity for patients outside of this context (Degnan et al., 2018).

3.1. Potential strategies to improve psychosis care across cultures

On an individual provider level, humility, empathy, perspective-taking, and consistency are foundational strategies for providers to work to build trust. Incorporating elements of the Cultural Formulation Interview (CFI) from the DSM-5 in initial psychiatric evaluations and throughout subsequent visits may increase engagement in psychosis care (Aggarwal et al., 2020). Across treatment settings, the CFI can aid providers in identifying the impact of a patient’s culture on treatment, improve patient-provider rapport, and help patients and providers align treatment goals (Aggarwal et al., 2020). On an organizational and systems level, the clinical workforce should mirror the patient population as much as possible so as to minimize cultural gaps.

4. Preference for autonomy

Through mechanisms such as involuntary hospitalization and involuntary medication administration, patients may experience a profound loss of perceived autonomy following the onset of psychosis. Further, many transitional-aged youth living with an SSD may experience a sudden loss of autonomy due to increased monitoring by family and other supports during a time when their peers are rapidly gaining independence. For these reasons, many patients may prefer to handle problems on their own without the help of ongoing mental health care. Some patients may prefer to seek treatment only as needed during times of crisis.

4.1. Potential solutions to optimize autonomy in care

Utilize motivational interviewing and a shared-decision-making approach to offer choices and emphasize autonomy throughout treatment consistently. Ask patients what solutions they believe they would find most helpful in recovery (e.g., reducing stress or talking with friends) and take a collaborative approach around including these elements in the treatment plan. Engagement with peer support services also may increase sense of autonomy by promoting self-efficacy and mitigating self-stigma (Vayshenker et al., 2016).

5. Limited efficacy and tolerability of available treatment

Antipsychotics are largely only effective for positive symptoms and approximately 30 % of patients have positive symptoms largely refractory to non-clozapine antipsychotics (Kahn et al., 2015; Correll et al., 2019). To the extent that psychosocial interventions for negative and cognitive symptoms exist, they tend to be time-intensive with significant patient burden (Munson et al., 2022). Further, many patients disengage from care due to intolerable medication side effects. It is not surprising that many patients who experience persistent symptoms and/or intolerable side effects may disengage from care after multiple medication trials.

5.1. Potential solutions for limited efficacy and tolerability of available treatment

On an individual provider level, showing humility around the limitations of current treatment options may build rapport and strengthen trust. Early psychoeducation with patients and families can help set realistic expectations around the efficacy of antipsychotics for negative and cognitive symptoms and may increase the acceptability of psychosocial interventions. As a field, we need to continue investing in high-quality research to improve the efficacy, tolerability, and acceptability of existing treatments. Through targeted education efforts, we need to increase provider comfortability around clozapine, social skills training, cognitive enhancement training, and other effective but often under-utilized treatments.

Engaging reluctant patients requires a careful analysis of the precipitating factors interfering with sustained treatment for psychosis. A survey of the impact of a patient’s positive, negative, and cognitive symptoms on the ability to engage in care can provide insight into interventions to prioritize to facilitate engagement in care. Open-ended questions and reflective listening can be powerful tools in unmasking structural and attitudinal barriers to psychosis care across treatment settings.