Beyond symptoms: the importance of hearing the patient’s voice in measuring life engagement

Historically, the definition of mental illness has been diagnosis-focused, with successful treatment defined as ‘absence of disease’1. This is shifting to a person-focused definition. Treatment goals need to encompass positive psychological function1, as the absence of mental distress does not guarantee the presence of mental well-being. This ECNP 2021 symposium encouraged clinicians to look beyond symptom control, to improved patient life engagement and resilience, with the use of functional patient-reported outcomes.

Successful treatment goal-setting

Melissa Paulita Mariano (University of the East Ramon Magsaysay Memorial Medical Center, Quezon City, Philippines) introduced the session by stressing the importance of treatment goal-setting. This identifies priorities, enhances patients’ motivation, promotes patients’ ownership of the recovery process, and leads to focused efforts2. Successful goal-setting should be collaborative, and revisited and adjusted as an active process between clinician and patient2,3.

Improved communication is essential, as treatment goals may differ between patients and healthcare professionals

Improved communication is essential, as treatment goals may differ between patients and healthcare professionals (HCPs). A study in major depressive disorder (MDD)4 showed that the most common acute primary treatment goal for patients (29%) and HCPs (53%) was to lift mood, but that patients also valued return to social (21%), family (20%) or work (14%) life, and reduced side effects (16%), whereas only 1% of HCPs considered reduced side effects as the primary treatment goal. Similarly in schizophrenia, patients’ treatment goals encompass more than just symptom control, with other common goals being able to think clearly and reduced hospitalisations5. HCPs undervalue resumption of activities of daily living, improved satisfaction, and recovered capacity for work6.


Restoration of functioning remains an unmet need

Failure to achieve symptom remission has a significant impact on patient functioning

Roueen Rafeyan (Fienberg School of Medicine, Chicago, USA) discussed how restoration of functioning remains an unmet need in both MDD and schizophrenia. The STAR*D study7 showed that approximately one-third of patients do not achieve symptom remission after multiple treatment steps, and this has a significant impact on patient functioning8. In a large-scale meta-analysis of antipsychotics, not all medications outperformed placebo on measures of social functioning9.


Introducing patient life-engagement

There is therefore recognition of the need for treatments that achieve benefits beyond symptom control10. Patient life engagement11 refers to positive health aspects relating to cognition, vitality, motivation and reward, and the ability to feel pleasure – outcomes that are important to patients. Dr Rafeyan stressed that combining measurement-based care with the patient’s voice, is key to understanding the full impact of a condition.

PROs that capture meaningful domains to patients are needed in measurement-based care

In order to achieve this, suitable assessment tools are required that can adequately reflect the patient’s voice12. These should cover cognitive, social, physical, and emotional aspects. One suggestion is increasing use of patient-reported outcomes (PROs)13. Patient life engagement requires PROs to capture domains that are meaningful to patients, and not just symptoms evaluated on observer-related scales.


Beyond response to recovery and resilience

Greg Mattingly (Washington University School of Medicine, St. Louis, USA) described how the aim of treatment is changing:

  • Response - many symptoms remain
  • Remission - symptoms mostly alleviated, but some remain
  • Recovery - few/no symptoms, improved patient functioning and quality of life
  • Resilience

Resilience is critical to promotion of health, and prevention and treatment of mental health problems

Resilience is critical to promotion of health, and prevention and treatment of mental health problems14. Fostering resilience involves basic strategies like adequate nutrition, sleep, and physical activity, combined with additional strategies such as mindfulness training and pharmacotherapy15. Targeting neural systems involved in emotion and stress regulation, cognitive processes and social behaviours, may ultimately effect the neurobiological changes that drive behaviour15. In a holistic view, helping patients to achieve resilience, and engage with their lives, is essential in shared treatment decision-making.


Using patient-reported outcomes to measure patient life engagement

Patient life engagement is a measurable outcome that can improve following treatment

Prof Mattingly discussed 10 selected items of the the IDS-SR (Inventory of Depressive Symptomatology – self-report, IDS-SR10), a patient-reported measure that has been explored to capture elements of patient life engagement beyond the core symptoms of depression16. It may be worth exploring the IDS-SR10 in disease states other than MDD. Early studies suggest that patient life engagement is a measurable outcome that can improve following treatment16.

All the speakers agreed that a holistic approach to patient-centric care is needed in MDD and schizophrenia. The new concept of ‘patient life engagement’ reflecting meaningful treatment outcomes to patients is also measurable, which can help HCPs to incorporate patient perspectives in developing a healthcare strategy.


Educational financial support for this Satellite symposium was provided by Otsuka/Lundbeck.


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Our correspondent’s highlights from the symposium are meant as a fair representation of the scientific content presented. The views and opinions expressed on this page do not necessarily reflect those of Lundbeck.


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