A decision aid is not the quick fix for improving shared decision-making in advanced Parkinson's disease: results of a mixed methods feasibility study.

BACKGROUND

Choosing a device-assisted treatment for persons with Parkinson's disease (PwPD) is a complex decision. We developed a shared decision-making (SDM) intervention to facilitate this decision. In this study, we evaluate the feasibility of this intervention from the patients' perspective.

METHODS

We performed a multi-center, mixed-methods feasibility study with an uncontrolled pre-post-intervention design. Five neurologists and seven Parkinson nurse specialists from five Dutch hospitals participated. We aimed to enroll 20 PwPD in the usual-care group receiving decision support as usual, and 20 PwPD receiving the SDM intervention. The intervention consisted of a patient decision aid and a training for professionals. We evaluated feasibility by measuring acceptability, level of implementation, efficacy and the study procedures. For data collection, we used questionnaires, interviews, cognitive testing, consultation recordings, fieldnotes, and usage of the patient decision aid.

RESULTS

We included 19 PwPD in the usual-care group and 13 in the intervention group. Acceptability was good and implementation levels at the patient level were adequate: 92% of the participants used the patient decision aid, of which 77% the website and 69% the value clarification tool. The intervention improved PwPD's knowledge on treatment options, however, it did not improve SDM. The SDM intervention was not used as intended and the initial treatment preference of either the PwPD or the professional directed the information exchange.

CONCLUSIONS

Inclusion of PwPD for the study was limited. Acceptability of the SDM intervention was good, however, the patient decision aid should be used in collaboration between physicians and patients to enhance SDM.

TRIAL REGISTRATION: NTR6649, registered 28-08-2017 (available through ICTRP search portal).