This blog looks at an RCT by Alegria et al, trialling an intervention that teaches service users to ask questions and make collaborative decisions with healthcare professionals (HCPs).
Although the trial shows some benefits to how empowered service users felt (through measures of ‘activation’ and ‘self-management’), I was left wondering whether they actually engaged and benefitted from the services. This raises some troubling questions about how services can meet the needs of a diverse population.
In spring 2014 Alegria et al, based in the USA, published an article in JAMA Psychiatry showing the results from an intervention named DECIDE. They used an RCT design that had three aims:
- Evaluate the effectiveness of the DECIDE intervention in increasing self-perceived ‘activation’ and ‘self-management’ in mental health services AND engagement and retention
- Investigate differences in how effective the intervention is across ethnicity, gender and levels of education.
- See if the differences are accounted for by changes in communication and therapeutic alliance between participants and HCPs.
In a nutshell, DECIDE aims to build awareness of the service user’s role in decisions about their care including how they can become more involved and seek information from independent sources.
The researchers used an RCT design with 329 participants in the intervention group and 318 in the control group. They recruited their 647 participants from 13 outpatient mental health clinics across the USA and Puerto Rico.
DECIDE was delivered to service users by Care Managers who had been trained in the intervention, and were done in three sessions over about 3 months. The control group received only a printed brochure with information on managing mental health through lifestyle changes. During this time all participants received their normal therapeutic interventions. Unfortunately the trial wasn’t blinded in any way so we’d expect some serious Hawthorne and placebo effects.
Measures were taken at baseline and then again after the initial and final intervention sessions. These looked at self-perceived activation and self-management. They also looked at engagement and retention figures and therapeutic alliance.
- Those participants receiving the intervention reported higher levels of activation (p = .003) and self-management (p = .008) compared to the control group
- However, the intervention didn’t have an effect on levels of engagement (p = .82) or retention (p = .51) meaning it’s unclear how it impacted behaviour
- The effect sizes on activation and self-management were relatively small (d = 0.26 and d = 0.22)
- However, two groups showed more benefit
- Those with lower activation at baseline showed more improvement in activation scores (p = .02)
- Those describing themselves as ‘Asian or mixed race’ showed more improvement in self-management scores (p <.001)
- The effects on activation and self-management reduced slightly (16% and 19%) yet remained significant after taking into account changes in therapeutic alliance. This means the intervention effects aren’t just because one group liked their therapists more than the other
The authors concluded that:
The DECIDE intervention can contribute to enhanced patient activation and self-management, but without greater health care professional receptivity to activated patients, the contributions may be limited. Changes in the locus of control in the clinical encounter through patient-directed interventions may decrease patient–health care professional communication and in some cases create more tensions in the clinical encounter.
The results from this RCT suggest the DECIDE intervention can help some people feel more empowered in collaborating on healthcare decisions and managing their own health. It also suggests that professionals can play a more active role in helping service users to collaborate on decisions.
However, there are some limitations to this research that questions how useful it is to clinical practice:
- “Tensions?” I’m not so sure – The intervention effect on self-report measures is contradicted by the lack of improvement in engagement and retention. The authors suggest this may be due to HCPs reacting negatively to more activated service users. However, due to “limitations of health records data” they couldn’t determine whether service users completed therapy or dropped out. This conclusion is therefore somewhat speculative and brushes over a methodological weakness. It also pre-supposes a divide of ‘patient vs. professional’. Might the professionals be limited in what they can offer service users due to constraints set by management and budgets?
- Why should service users have to change? – The authors suggest a need for targeting those most likely to benefit from such interventions. However, I would argue that services shouldn’t expect their users to conform to certain ‘rules of engagement’ and could do more to meet the needs of those most excluded. For example, here in London a couple of services are pioneering alternative ways to engage vulnerable young people (Kids Company; MAC-UK).
- A realistic form of delivery? – I wondered how cost effective such an intervention would be. Delivering such interventions in an individual format is costly and therefore has limited applicability in services that ration therapy sessions. I’d have liked to see how beneficial a group-based version would be.
In conclusion, the DECIDE intervention may be beneficial to some service users in a limited way. However, it has limited value in resource constrained settings such as the UK’s NHS. It would be a little like empowering service users on the one hand whilst strictly rationing therapy on the other. If we aren’t meeting a portion of the population’s needs then what should change? Service users? Or service providers?
Alegria, M. et al. Activation, Self-management, Engagement, and Retention in Behavioural Health Care. A Randomized Clinical Trial of the DECIDE Intervention. JAMA Psychiatry. 2014; 71(5); 557-565.