The NHS is changing and patient choice has never been more important. In order to make an informed choice about treatments it is important to understand the risks and benefits that are involved.
Benefits and outcomes associated with taking a medication are varied, and may not all be positive. In mental health we don’t clearly know the priorities or key outcomes that service users look for when taking a medication. For example, for people with schizophrenia, it may be that having fewer negative voices is more important than weight gain, but being able to concentrate well enough to get a job is even more important.
We need good quality research that asks service users about their preferences. If we lack this knowledge most clinicians will continue to guess what service users want based on their own values and opinions. This will probably result in too much focus on symptomology and side-effects.
A new systematic review published last week in BMJ Open by Eiring and colleagues aimed to investigate patients’ preferences for outcomes associated with psychoactive medications.
A systematic search of numerous databases and grey literature was undertaken. After removing duplicates, 11,215 records were screened, with full-texts being examined for 55 papers. Two researchers completed independent review and data extraction. 39 papers were excluded at this point, five of those on the basis of methodological quality. They did not include studies with a high risk of bias.
The reviewers focused on preferences for outcomes that measured:
- The consequences of taking psychiatric medication
- The attributes of psychiatric medication
- Health states associated with psychiatric medication
- Process outcomes
- 16 papers were included in the review which used a variety of methods to understand preferences
- The studies were published between 1993 and 2013. Five were published more than 20 years ago
- 13 of the 16 papers were funded by the pharmaceutical industry
- Most papers only focused on:
- Side effects (14/16) or
- Symptoms (11/16)
- The populations were largely community based and lived in the USA
- The studies focused on:
- Schizophrenia (n=9)
- Depression (n=4)
- Bipolar disorder (n=2)
- ADHD (n=1)
- Side effects (extra-pyramidal), severe symptomology seemed most important, social functioning less so. Although side effects and symptomology were presented most frequently to the participants
- Avoiding inpatient treatment was also regarded highly
- There was a clear difference between service user preferences and the general public.
The authors concluded:
Insufficient evidence exists on the relative value patients with mental disorders place on medication-associated outcomes. To increase patient-centredness in decisions involving psychoactive drugs, further research – with outcomes elicited from patients, and for a larger number of conditions – should be undertaken.
Surprisingly, only a minority of the studies have been performed from patients’ perspectives. The evidence does not allow firm conclusions on what outcomes of psychotropic medications matter most to patients, and there is an obvious need for more research.
The biggest surprise from reading this review was the complete lack of patient involvement in the development of the included primary research. Asking clinicians or the drug industry to identify a number of limited outcomes (mainly focused on side effects and symptomology) which were then presented to service users, seems to have missed the point. By not engaging with service users in the development of the primary research numerous vital outcomes have probably been missed. Only six of the studies included in the review asked patients about their perspectives is designing the studies. The lack of involvement also seemed to contribute to the difficulty most participants with schizophrenia had in engaging with the stated preference methods in the primary research. Future research clearly needs to start with the outcomes which services users value.
It is unclear from the paper whether all side effects were considered or just specific ones. There is some discussion about extra-pyramidal side effects associated with older antipsychotic medications, and weight gain associated with the newer antipsychotics was also raised. However, there’s nothing on sexual dysfunction or metabolic syndrome, which is an omission. If we are to enable a clear choice between different antipsychotic treatments (not considered in this paper), we will need a detailed understanding of the risks and benefits of each drug, as discussed in this previous blog.
One thing above all is abundantly clear from this review. There is a lot more work to be done; decision aids need to be created and future stated preference studies need to involve services users in the design process.
Eiring O, Landmark BF, Aas E, Salkeld G, Nylenna M, Nytrøen K. (2015) What matters to patients? A systematic review of preferences for medication associated outcomes in mental disorders. BMJ Open 2015;5:e007848. doi:10.1136/bmjopen-2015- 007848