Making decisions about antipsychotics: a qualitative study of patient experience and the development of a decision aid

S J Kaar,E Butler,C Henderson,C Gobjila,O D Howes

doi:10.1186/s12888-019-2304-3

Abstract

BackgroundShared decision making is a widely accepted standard of patient-centred care that leads to improved clinical outcomes, yet it is commonly underutilised in the field of mental health. Furthermore, little is known regarding patient decision making around antipsychotic medication, which is often poorly adhered to. We aim to explore psychiatric patients’ experiences of antipsychotic medication decision making in order to develop a patient decision aid to promote shared decision making.MethodsFocus groups were conducted with patients with chronic psychotic illnesses (n = 20) who had previously made a decision about taking or changing antipsychotic medication. Transcripts were coded and analysed for thematic content and continued until thematic saturation. These themes subsequently informed the development of a decision aid with the help of expert guidance. Further patient input was sought using the think aloud method (n = 3).ResultsTwenty-three patients participated in the study. Thematic analysis revealed that ‘adverse effects’ was the most common theme identified by patients surrounding antipsychotic medication decision-making followed by ‘mode and time of administration’, ‘symptom control’ and ‘autonomy’. The final decision aid is included to provoke further discussion and development of such aids.ConclusionsPatients commonly report negative experiences of antipsychotic medication, in particular side-effects, which remain critical to future decision making around antipsychotic medication. Clinical encounters that increase patient knowledge and maximise autonomy in order to prevent early negative experiences with antipsychotic medication are likely to be beneficial.

Highlights

Shared decision making is a widely accepted standard of patient-centred care that leads to improved clinical outcomes, yet it is commonly underutilised in the field of mental health
Recent systematic reviews show that patients who actively participate in shared decision making have higher satisfaction with their care [5, 6] and less decisional conflict characterised by uncertainty about the best course of action among competing options involving risk, regret, or challenge to personal values [7]
There were four main recurrent themes identified across transcripts: adverse effects were discussed by all but two participants, making it the primary and most common theme across transcripts, mode and time of administration was discussed by half of the participants, followed by symptom control and autonomy

Summary

Introduction

Shared decision making is a widely accepted standard of patient-centred care that leads to improved clinical outcomes, yet it is commonly underutilised in the field of mental health. Shared decision making is a widely accepted standard of patient-centred care [1] where both the patient and clinician contribute to a medical decision by sharing information and responsibility [2]. Despite shared decision making being a widely accepted standard of patient-centred care [1], it is commonly underutilised in the field of mental health [8]. One trial of an antipsychotic decision aid on psychiatric inpatients showed positive short term effects in patients’ perceived involvement in decision making [15], but subsequently failed to show a significant difference in longer term outcomes (rehospitalisation and medication adherence) [16]

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