Involving Patients in Weighting Benefits and Harms of Treatment in Parkinson's Disease

Abstract

IntroductionLittle is known about how patients weigh benefits and harms of available treatments for Parkinson’s Disease (oral medication, deep brain stimulation, infusion therapy). In this study we have (1) elicited patient preferences for benefits, side effects and process characteristics of treatments and (2) measured patients’ preferred and perceived involvement in decision-making about treatment.MethodsPreferences were elicited using a best-worst scaling case 2 experiment. Attributes were selected based on 18 patient-interviews: treatment modality, tremor, slowness of movement, posture and balance problems, drowsiness, dizziness, and dyskinesia. Subsequently, a questionnaire was distributed in which patients were asked to indicate the most and least desirable attribute in nine possible treatment scenarios. Conditional logistic analysis and latent class analysis were used to estimate preference weights and identify subgroups. Patients also indicated their preferred and perceived degree of involvement in treatment decision-making (ranging from active to collaborative to passive).ResultsTwo preference patterns were found in the patient sample (N = 192). One class of patients focused largely on optimising the process of care, while the other class focused more on controlling motor-symptoms. Patients who had experienced advanced treatments, had a shorter disease duration, or were still employed were more likely to belong to the latter class. For both classes, the benefits of treatment were more influential than the described side effects. Furthermore, many patients (45%) preferred to take the lead in treatment decisions, however 10.8% perceived a more passive or collaborative role instead.DiscussionPatients weighted the benefits and side effects of treatment differently, indicating there is no “one-size-fits-all” approach to choosing treatments. Moreover, many patients preferred an active role in decision-making about treatment. Both results stress the need for physicians to know what is important to patients and to share treatment decisions to ensure that patients receive the treatment that aligns with their preferences.

Are Patients Ready for “EARLYSTIM”? Attitudes towards Deep Brain Stimulation among Female and Male Patients with Moderately Advanced Parkinson’s Disease

“…However, non-operated upon patients' own thoughts, considerations, and apprehensions concerning advanced therapy for PD have received scarce attention in the literature [10, 11]. This issue is all the more interesting in light of existing gender differences, with more men than women undergoing DBS for PD [12–15] and given the current trend of suggesting DBS earlier in the disease progress [16–18].…”

Effects of self‐management education for persons with Parkinson's disease and their care partners: A qualitative observational study in clinical care

“…Knowing and using techniques of self‐monitoring and ability to communicate self‐observations during clinical encounters provide a one way for PwPD and care partners to be actively involved in decisions about care and medical treatment. The wish of PwPD to be involved in decisions concerning their own care has been recognized in several studies (Eygelshoven et al, 2017; Grosset & Grosset, 2005; Weernink et al, 2016). Self‐monitoring as a cognitive tool has been used for many years in cognitive behavioral therapy to help people handle psychiatric disorders, leading to a better understanding of the self and of emotional reactions (Cohen, Edmunds, Brodman, Benjamin, & Kendall, 2013; King & Boswell, 2019) and has been helpful in managing other types of chronic physical diseases as well (Andersson & Oakinci, 2018).…”

Access and Use of Device‐Aided Therapies for Parkinson’s Disease in Denmark

“…Similarly, we found in our study that being a PD patient with lower education level was significantly associated with less likelihood of starting DAT, compared to PD patients with a higher education. One study on the decision‐making process for PD patients found that, on a number of parameters, PD patients showed very diverse information needs on DAT, 37 supporting the notion that communicating and choosing treatments require an individualized approach 38 . However, more research is needed on the role and intersection of sex and socioeconomic factors in the decision‐making process of DAT in patients with advanced PD.…”