Schizophrenia today: how important is the patient perspective?

Understanding schizophrenia today: What’s new?

While the average age of onset of the schizophrenia spectrum and other primary psychotic disorders is 20.5 years,¹ integration of neurobiological and epidemiological data reveals a premorbid stage, from early life to adolescence, with accumulated risk factors then leading to the first episode. This may be followed by a number of relapses in young to middle adulthood and development of a chronic condition.² However, many people experiencing psychosis may be left untreated for a long period of time,³ by which point social and occupational life has deteriorated,³ cognitive function can be impaired⁴ and the patient lacks insight and is difficult to engage with.⁵ By this stage, symptoms may be severe and hospitalisation is required.³

Identifying early those at risk of psychosis is key to help prevent development and enhance long-term outcomes

Prof Fusar-Poli discussed how what is needed to help prevent psychosis are three core ingredients: detection of those at risk, formulation of a reliable prognosis forecasting tool and development of preventative treatment.⁶ While selective and indicated approaches for targeting people known to be more at risk are necessary, according to Prof Fusar-Poli, “if we want to shift the risk curve for detecting developing psychosis to the whole population, we need a universal approach.”² This is important because, he continued, “if we can detect young people in the very early phases, then in the clinical high risk stage we can offer preventive care and delay, if not prevent, the onset of further deterioration and restore healthy status and change a young person’s long-term course and life.” As an example of a preventative approach, the South London and Maudsley NHS Foundation Trust’s Outreach and Support in South London (OASIS) website called ‘Me and My Mind’ targets young people experiencing, for instance, paranoia and auditory hallucinations or other unusual experiences.⁷

“Preventative approaches for improving mental health in young people are the most promising avenue to change the course of the disorder.”²

In the long term, the likelihood of transitioning to psychosis in people at clinical high risk for psychosis (CHR-P) increases;⁸ and the longer the duration of untreated psychosis, the poorer the outcome in terms of negative and positive symptoms, functioning and quality of life (QoL).⁹ As such, prediction of the first episode of psychosis (FEP) is key. A review of 42 meta-analyses found that people at CHR-P frequently displayed suicidal ideation and self-harm as well as having impairments in employment, education, social functioning and QoL.¹⁰ Another systematic review and meta-analysis found that people at CHR-P had deficits in a number of neurocognitive tasks including those testing processing speed, verbal or visual learning, social cognition, working memory and attention.¹¹ Machine learning methods are also being used to help predict the FEP risk, such as one where a recurrent neural network model was developed using US data from over 20 years including 145,720 people with a FEP and controls. Using this, they demonstrated that it’s possible to improve detection of people at CHR-P.¹²

Thinking beyond symptom control in schizophrenia: Functional recovery.

“We need to give [patients diagnosed with schizophrenia] abilities and outlets for being connected, with people, with life, with themselves,” said Prof Correll. “For this, we need psychosocial interventions.”

Schizophrenia treatment typically involves acute, stabilisation and maintenance phases.¹³ Outcomes within these phases include initial response to treatment (18−65% overall, 40−87% for FEP¹³), then symptom remission (only 7−52% overall, 17−81% for FEP¹³), then recovery in terms of independent functioning (only 8−20% overall, 16.6% for FEP¹³).^14-17 However, at each stage, relapse may occur (57.3% overall¹³) and remission and recovery may be impacted.¹³ This may be in terms of both health-related QoL (HRQoL)¹⁸ – including domains of physical and social functioning and domains of perceptions of wellbeing¹⁹ – and functioning¹⁸ – including domains of education/work, relationships, behavioural functioning and satisfaction with functioning.^20,21

One factor that can impact development of FEP are psychoactive substances, especially cannabis and hallucinogens, and, to a smaller degree, sedatives and alcohol.²² Predictive factors for poor long-term outcomes following the FEP include fixed factors – male sex, earlier illness onset, longer illness duration, more severe illness and premorbid adjustment – and modifiable factors – non adherence, comorbidities, longer duration of psychosis and early non-response to antipsychotics.¹³

Early and sustained intervention is needed to help achieve remission and prevent relapse in patients with schizophrenia

Early intervention is key as both remission and recovery are positively impacted by such.²³ For instance, one study investigating recovery in FEP (n=392) found that at 3 years, while 51.7% had symptomatic recovery, 44.3% had QoL recovery, 35.0% functional recovery and only 17.1% all three. This study also showed how recovery can be predicted by early remission (within 3 months) with 65.3% of 49 patients with early remission showing recovery in all three domains at 3 years compared to 10% of the 310 patients with early non-remission.²⁴

To aid recovery, pharmacotherapy can be combined with psychosocial interventions, such as social skills training, vocational rehabilitation, family interventions therapy, psychoeducation and cognitive therapy.^25,26

When aiming for recovery, it is important to personalise outcomes for a patient with schizophrenia. Management needs to take into account comorbid illnesses^5,25 and address psychosocial functioning within the realms of work/academia, interpersonal relations, self-care and leisure time.^5,26 Negative symptoms of schizophrenia are predictive of psychosocial functioning, such as community activities, interpersonal behaviour and work skills, especially their impact on social competence.²⁷ Negative symptoms may be complex, being not only a result of the illness, but also of physical morbidities (such as chronic pain or sleep apnoea), environmental conditions (such as stigma and deprivation) and side effects of medications.²⁸ Cognitive dysfunction in schizophrenia can also be impacted by comorbidities, such as metabolic syndrome, diabetes and hypertension.²⁹

Of note though, functioning can be impacted by medication adverse events. For instance, activating adverse events can impact sleep and manifest as restlessness and shaky arms. Sedating adverse events can leave a person feeling drugged and/or sleepy during the day and cause dizziness/fainting. Other side effects include weight gain and sexual dysfunction.³⁰

“Side effects [of medication],” discussed Prof Correll “are not just a nuisance variable. They’re actually coming in between the spearhead of efficacy and adherence alliance. We need adherence-promoting treatments and to reduce side effects.”³¹

Relapse prevention is also crucial as relapses are associated with a number of difficulties, including long-terms symptoms, disability, decreased treatment response,^32,33 increased risk of suicidality,³³ brain structure decline,³⁴ increased family/caregiver burden and greater healthcare resource use.³²

Considering the patient perspective in the treatment of schizophrenia: Shared decision making.

Studies have shown that 30% of patients feel their physician does not talk to them about their medication,³⁵ 61% say they would make a different treatment decision to their physician³⁶ and 60% say they were not offered a choice between two drugs.³⁵ Indeed, another study highlighted the need for better mental health professional communication skills and the need for decision support tools.³⁷

Nearly one third of patients feel their physician does not talk to them about their medication and nearly two-thirds say they would make a different treatment choice

The paternalistic model is one where the physician alone decides a patient’s treatment. In shared decision-making (SDM), the physician’s role is to provide professional guidance, inform patients and help develop their personal preferences.³⁸ These may also take into account input from patient care-givers.³⁹ By providing information and supporting the decision-making process, the aim is to help giving patients the capacity to make free, independent choices regarding their health-related goals.^40,41 This takes into account that, while the physician may know a lot about the illness as a whole, the patient and their caregivers are the experts when it comes to the individual.³⁹ A shared treatment plan derived from this process can lead to improved health and more efficient resource use.^38,42

With shared decision-making, the physician’s role can provide professional guidance, inform patients and help them develop personal preferences³⁸

A three-step model has been set out to aid the SDM process. Step 1 includes Choice Talk, where the patient is informed of their options and the need to consider them. Step 2 involves Option Talk where more detailed information is provided, and the pros and cons are weighed up with the use of decision support tools where appropriate. Step 3 is Decision Talk where the patient is helped to explore what matters most to them so as to provide personalised treatment preferences.^38,40 SDM training for patients can result in more active behaviour during psychiatric consultations. SDM training for mental healthcare professionals can improve the quality of the therapeutic alliance and patient acceptance of pharmacological treatments.⁴³

Training mental healthcare professionals in shared decision-making can help improve the therapeutic alliance⁴³

Factors that can facilitate SDM also include health beliefs and personality traits, along with positive experiences, lack of symptoms, patient behaviour during decision making and having a good relationship with their children. Conversely, barriers to SDM include not only a patient’s symptoms, behaviour and personality traits, but also their experiences, health beliefs, family relationships and attitudes toward psychiatric treatment.⁴⁴ One formulated approach to SDM is called SDM^plus, an integrative approach that combines a classical approach to SDM with a focus on recognising ‘life or death,’ ‘preference-sensitive’ and ‘best-choice’ decisions, taking into account both patient preference and best practice. Such a model has been shown to significantly increase a patient’s perceived level of involvement in decision making in acute settings.⁴³

Shared decision-making can help reach and maintain treatment goals by improving the quality of the therapeutic alliance

An additional tool, motivational interviewing, involves four overlapping steps: building a working relationship through engagement; focussing the direction of change; evoking and reinforcing the patient’s motivations for change, ideas and feelings; and formulating an action plan that includes the patient’s own solutions.³⁸

Prof Heres concluded by saying how “SDM is essential if you want to keep patients in treatment.”

Combining both SDM and motivational interviewing can help in vital areas, such as medication adherence.^37,38,45,46

Educational financial support for this Satellite symposium was provided by Otsuka Pharmaceutical Development and Commercialization Inc., and Lundbeck A/S.