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Treatment Journey for People Living With Schizophrenia Advances

Video Transcript

Mateo is living with schizophrenia. He's a likable 23-year-old Hispanic young man who reminds one of a big teddy bear. He presents with prominent positive symptoms, including hallucinations, delusions, grandiosity, excitability, hostility, and lability. Mateo's family is deeply rooted in their faith and believes he's being possessed by demons. The family seeks help from their religious leader, but the situation gets worse. Mateo perceives his father as an actual demon who's trying to harm him and his family. Mateo eventually assaults his father, causing serious bodily injuries, including a broken arm. This incident created a deep fear of Mateo within his own family. While most people with schizophrenia are more likely to be assaulted than to initiate the assault, this wasn't the case for Mateo.

Amir is living with schizophrenia. He's a 19-year-old Middle Eastern young man who presents with prominent negative symptoms, including blunted affect, emotional and social withdrawal, and alogia that makes him seem aloof, self-absorbed, and distant with a vacant look. In Amir's culture, like many others, mental illness comes with stigma. A prominent family figure is his father, who refuses to acknowledge Amir's condition. This resulted in his family delaying bringing Amir in for treatment, and for Amir, this led to an increase in his symptoms and further deterioration of his mental status. Unfortunately, the stigma of mental illness in his culture has left him isolated.

Katie is living with schizophrenia. She's a 24-year-old Caucasian woman who, at first glance, appears to be a young, attractive, and athletic person who anyone would want as a friend. However, she presents with symptoms of disorganization, disorientation, bizarre behavior, mood-labeled depression, and anxiety. Katie attempts to placate her symptoms through the use of alcohol and different illicit substances. She experiences hallucinations, both accusatory and command type, and delusions, both reference and persecutory. Unfortunately, Katie believes the illicit substances can rid her of the hallucinations and delusions, behaviors that have caused much anguish and distress for her family and those who care for her.

These stories illustrate the heterogeneity of the deceased burden and the challenges faced by patients, families, and the clinicians caring for them. And unfortunately, this is a disease that strikes patients like Mateo, Amir, and Katie in one of the most promise-filled periods of their lives as young adults, with the onset typically occurring in patients in their early 20s to early 30s.

Although Mateo, Amir, and Katie each face unique challenges, we also know that some of the burdens brought on by schizophrenia are common among patients. Shockingly, life expectancy is 10 to 20 years shorter for patients with schizophrenia than in the general population. The continuous struggle to distinguish between reality and symptoms often leads to despair and social isolation, and as patients become socially isolated, their diagnosis can impact their socioeconomic well-being.

As many as 80% of patients experience unemployment, and 20% experience homelessness, facts that are difficult to digest. We see that people with serious mental illnesses, such as schizophrenia, are overrepresented among the incarcerated population. Much of this occurs because patients struggle with repeated relapses.

Given the heterogeneity of the disease and the fact that patients and their families don't always recognize or understand the importance of treating symptoms of schizophrenia, this really begs the question, what is the best way to approach care for these patients? For many patients and families who are facing a diagnosis, it's easy to get stuck in negative feelings of shock, denial, pain, anger, and depression. Caregivers often face higher psychological distress, feelings of loss of personal and family connections, and social isolation. However, with help, patients and their families can arrive at acceptance and find hope for their future.

The first step is to empower patients and their caregivers to educate on the disease itself. Facing a lifelong illness that the patients themselves lack insight into or understanding of is certainly a huge challenge for us as clinicians, but I see achieving some level of comprehension about the disease among patients and their families as a key to overcoming its associated obstacles. Part of understanding the challenges of the disease is to help patients understand that their journey means dealing with the risk of a relapse or re-hospitalization. I try to help them understand that even once they're feeling better, without medication, they might return to that place of terror and isolation. These relapses can have significant consequences for people living with schizophrenia. Not all patients are willing to begin taking medications after a schizophrenia diagnosis, but once patients do initiate medication, oral options are often presented first without a discussion of other formulations, including long-acting injectables.

Take Mateo, Amir, and Katie. They were all offered oral anti-psychotics under different circumstances by other clinicians. Mateo's aggression was initially addressed with an involuntary inpatient hold and treatment with an older medication that cost him an acute dystonic reaction. This made him leery of taking medication and compounded his belief that medication would be counterproductive for him. I needed to have a lengthy discussion with him and his family about the different available options and the difference in peak-to-trop variability associated with different formulations so that Matteo could reconsider other formulations. After several discussions, he ultimately opted to try out a long-acting injectable and is faring well while continuing to participate in group cognitive therapy. Amir's father was reluctant to even hear about anti-psychotics.

 Amir's symptoms worsened over time to the point of requiring hospitalization, secondary to his bizarre behaviors. Even at that point, Amir's family viewed any medication as intrusive. Considerable education was needed for his whole family before even an oral medication was accepted, but once he got started on an oral medication, this allowed additional inroads for speaking with him and his family about long-acting injectables during our subsequent visits. Amir ended up accepting a long-acting injectable after several visits. And I've seen a notable change in his progress.

Katie, too, had multiple oral medications prescribed to her with limited success, accompanied by a maladaptive pattern of trying to self-medicate with illicit substances. Her further decline ultimately led her family to request something different that might work for her, which prompted a dialogue about long-acting injectables, but even after starting a long-acting injectable, she was reluctant to take the medication and resisted coming into the clinic. We were able to address her resistance with further outreach and linkage with appropriate community services. Through these efforts, she's been able to avoid the cycles of decline and deterioration of her mental condition that had become commonplace in her life prior to accepting long-acting injectables.

Unfortunately, many patient journeys reflect the difficulties I've shared today. But continuing to offer oral medications as the only treatment option and not offering a different treatment option when patients continue to have difficulty taking their oral medications as prescribed does a disservice to our patients. After all, why should we expect not just because of my own experiences but because there are data supporting how patients struggle with adhering to their oral medications?

In one study, nearly half of patients were non-adherent within 6 months after a hospital stay. We also know that patients with schizophrenia are treated with an average of four different oral medication regimens before starting a long-acting injectable. Collectively, this tells us that many patients struggle with oral medications for years. Doesn't it make sense to advise patients and families early on about all their treatment options, including long-acting injectables? However, hesitancy on the part of both clinicians and patients can hinder long-acting injectables. If a clinician in their own heart of hearts feels that they would not want to receive an injectable option, they won't initially offer it or consider it. But challenging our own biases is critical to helping us treat our patients more effectively.

Individuals facing the hardships of a schizophrenia diagnosis need help to understand all of their options so they're empowered to make the best decisions for themselves. Of course, not every patient will accept a long-acting injectable initially. Some may have a phobia of needles. Some may feel as if they're going to be controlled via an injection or feel a sense of loss of control if something is put into them. Some of these concerns can be addressed through dialogue.

I discuss with my patients how, therapeutically, long-acting injectables offer similar benefits to orals without the burden of daily administration. That it is exactly the same active ingredient as the medication they're already taking; when considering long-acting injectables, sometimes I'll make an analogy to the convenience of different contraceptive options. We offer long-lasting formulations for contraceptives, so women no longer have to worry about remembering to take a daily pill.

The same rationale holds true in less frequent dosing of a long-acting injectable for patients with schizophrenia. This is why an open dialogue in patient education is so important. Trust matters, and enhancing the therapeutic alliance is paramount to long-acting injectable acceptance. By providing a consistent and more convenient way of obtaining treatment, long-acting injectables may help patients once again enjoy the opportunity to focus on other goals in their lives, which can evoke a greater sense of mastery over their well-being. Not only does the patient not have to remember or worry about taking a daily oral medication for their schizophrenia, but regular visits keep you as a clinician up to date with their progress. And as a clinician with long-acting injectables, you have complete information about your patient's adherence. You know if they were administered their medication.

Long-acting injectables can liberate caregivers and family members from feeling they must provide constant reminders about medication for the sake of maintaining wellness, while well-intentioned, such as nagging, can lead to a sense of frustration for the sufferer and the feeling that even taking their medication is something that's imposed upon them and that they have no control over. We should acknowledge that not all medications work for everyone. If someone is receiving their long-acting injectable, but the medication isn't working for them, it takes a guessing game out of whether their symptoms return due to non-adherence.

When we know adherence isn't the problem, then we can consider other treatment strategies that might be more suitable for the patient. This understanding allows us, as clinicians, to pivot and, for example, look for the right medication for each individual patient. Every day I'm striving to achieve greater success for my patients, but I feel my colleagues often underestimate their expectations for a patient's success.

Long-acting injectables constitute an enormous step forward for adult patients with schizophrenia. In prescribing long-acting injectables, I prefer to move away from using fear of relapse as an incentive for change. Instead, create a positive mindset of, let's give it a shot, and we may see some rewards in terms of delaying time to relapse, which can enhance stability in patients' lives. For me, these are stories about the opportunity for progress. Progress for patients.

Patients who were struggling—like Mateo, Amir, and Katie—and achieved success with long-acting injectables. Long-acting injectables gave these patients a chance to make an enormous step forward in their lives. And I believe long-acting injectables were an integral step in their journey. By helping our patients effectively manage their illness, we can do more to help them achieve fulfillment. We can do more for Mateo. We can do more for Amir. We can do more for Katie. We can do more for patients living with schizophrenia. Let's work to give control back to our patients. Give them back the freedom to achieve their goals and the opportunity to pursue more fulfilling lives.


©Janssen Pharmaceuticals, Inc. 11/24 cp-484835v1