Living with bipolar disorder without medication
Rationale of the research
The most current guideline for Bipolar Disorder (BD) recommends prophylactic treatment to “almost all individuals with BD” and “even after a first episode” in order to prevent subsequent affective episodes (Yatham et al. 2018). In current practice, often life-long pharmacotherapy is advised, since it is not clear in which conditions the maintenance treatment might eventually be safely tampered and stopped. Yet, rates of non-adherence to pharmacotherapy in BD are high. Especially in individuals of ≥50 years, the trade-off between efficacy and tolerability/safety of medication is complex and often dependent on individual patient preferences.
Medication studies in BD mainly focus on clinical recovery (fewer relapses) whereas patients often consider functional recovery as more important. In the fields of psychosis and depression, the recovery movement has urged an increase in research on safe guided discontinuation of maintenance therapy and the development of medication-free treatment options. In bipolar disorder however, this research is very scarce.
We know that a considerable group of individuals with BD exists that have wilfully decided to self-manage their illness without maintenance treatment. This special group is invisible to treatment facilities and therefore excluded from previous research. This is a lost opportunity, since they could provide indispensable knowledge on resilience in BD. In particular, it is unclear if these persons fully recovered clinically and functionally without medication and thus constitute an extra resilient group. If so, it is unclear what causes their resilience: do they represent a specific BD subtype with a milder clinical course with fewer recurrent episodes, do they use alternative effective self-management strategies, do they possess specific resources, or have they perhaps been misdiagnosed in the past when applying present-day, more stringent, BD criteria?
Quantitative: To compare clinical BD characteristics (e.g. BD severity) of a subgroup of older BD persons without medication to older BD individuals with medication
Quantitative + Qualitative: To explore the extent of resilience in the medication-free BD group
Qualitative: To explore personal attitudes and perspectives on illness, medication and coping in the medication-free BD group; To explore personal factors and effective self-management strategies that contribute to resilience when living with BD without medication.
Quantitative: To compare older BD persons with and without medication in terms of cognition, social functioning, somatic health, general functioning, coping, and personality traits.
Qualitative: To obtain a qualitative model of the decision-making process to quit medication; To describe a clinical phenotype of patients of patients who might be able to safely and effectively discontinue maintenance treatment for BD.
Proposed research strategy
Participants: Individuals with a diagnosis of BD (type I, II or NAO) for at least 5 years, without maintenance treatment for BD for the last 5 years, age ≥50 years. A recent history of affective episodes is allowed.
Design: Mixed-methods study in individuals with bipolar disorder that do not take medication for their illness.
- Quantitative part: New data collection in ±60 individuals. The assessment battery is identical to the Dutch Older Bipolar (DOBi) study, which allows for a direct cross-sectional comparison to 220 individuals with BD with medication. Measurements include (among others) a self-report questionnaire (incl. illness severity and course), a diagnostic interview, a neuropsychological assessment, and a physical health exam (incl. laboratory measurements, blood pressure, medical diseases, medication use), and the 6-item Brief Resilience Scale.
- Qualitative part: Explorative semi-structured interviews in a subset of ±20-25 participants. Topics will include personal attitudes towards- and experiences with BD, the decision-making process to quit medication, the extent of personal recovery and quality of life without medication, coping strategies, and an exploration of aspects that might have contributed to self-management or recovery (e.g. social aspects, meaning of life, philosophy of life).
Timeframe: Oct 2020-Dec 2022 (27 months).
Our project will aim to describe both clinical and personal characteristics of a special subgroup of BD. This knowledge could change clinical guidelines for BD, improve shared-decision making regarding maintenance treatment, and provide data to improve psycho-education courses with novel self-management strategies.