Parkinson’s Disease has many faces; and patients have many goals. As described by Marjan Faber (Department of Neurology, Radboud University Medical Centre, Nijmegen, the Netherlands), these include having effective interventions for both motor and non-motor symptoms. In this context, patient reported outcomes assume importance. These are accounts of experience that come directly from the patient, without interpretation by the clinician.

But patients also want to gain insight into the disease and its likely progression, and to receive support for shared decision making.

In the Netherlands, patients have the ParkinsonNet, which gives them access to motivated professionals who have been trained in PD. These include physical, occupational and speech therapists. There is also Parkinson Inzicht (or Insight), which has as an aim the collection of individual anonymized data including patient reported outcomes. So the infrastructure is in place.

A crucial part of care is capturing patients’ assessments

The importance of listening

Focus groups held in Dutch and US centres of excellence in PD care bring out the need for treatment by an integrated team rather than isolated specialists. They also show that patients value the opportunity to talk to someone about how to cope with the diagnosis.

We should see things from the patient’s perspective, which is not always the same as that of the doctor. In an earlier presentation on multiple sclerosis, Abhijit Chaudhuri (Queen’s Hospital, Romford, UK) had emphasised autonomy and independence as being valued by patients and mentioned that they rate mental health, emotional functioning and vitality more highly than clinicians when assessing quality of life.

A good relationship with a patient allows our goals to be aligned with those of a patient; and this can be done in a systematic way. The patient-centered questionnaire for PD (PCQ-PD) is a valid means of capturing patient experience and allows us to learn from best practice across centres and identify gaps in care.

In a recent study, twenty North American centres of excellence each asked fifty consecutive patients to complete the questionnaire. Emotional support was similar across centres but there were significant differences in information provision and collaboration. Many patients said they did not know enough about what professionals said to each other about their treatment. Nine centres have now used this feedback to change the way they provide care.

You don’t know unless you ask

The standardized 39-item Parkinson’s Disease Questionnaire (PDQ-39) gives us the opportunity to identify treatment goals, monitor disease progression in individual patients, and support shared decision making and self management. Questions about cognitive decline interfering with the ability to relate to a partner, family member or friend can be a particular challenge.

Sharing decisions

Difficult decisions are not rare in PD. At diagnosis, do we start treatment immediately, or wait a while? In advanced disease, how do we decide between the options of apomorphine, deep brain stimulation, and duodenal levodopa?

Shared decision making (SDM), and how it can be supported, was outlined by Frouke Nijhuis, Radboud University Medical Centre, Nijmegen, the Netherlands. She conceptualized the process as three partly overlapping circles: evidence, expertise (where the evidence is limited), and patient preference.

There is exchange of information in two directions, and it occurs in several stages. There is a time for defining and clarifying roles, listing treatment options, and appraising them based on patient preferences and values. Then comes a time of reflection ending with a decision. And then there is a period in which the consequences of the decision are evaluated.

Patients intend that there should be shared decision making but are not convinced it has happened

There is evidence that the majority of patients intend that decision making should be shared, but – once the decision has been made – only a minority feel that this has actually happened. In part, this is because patients feel they did not have all the necessary information.

There is a similar lack of congruence between aims and actuality among health care professionals: while over 80% said SDM would be useful, only 47% used it.

Both parties agree that there is a need for SDM to be better supported.

Insights from primary care

Medicine today is mid-way from paternalism, where doctors decide all, to consumerism, where the patient decides all

SDM isn’t something that is “nice to have”. It is an essential component of being a good doctor, said Norbert Donner Banzhoff, Department of Primary Care, University of Marburg, Germany.

With treatments to relieve symptoms, which is the classical model of medicine, it may be relatively straightforward. But for treatments that are designed to modify a disease process over time or reduce risk of eventual adverse outcomes, it is more difficult. Patients may experience immediate side effects while the hoped-for benefits are distant and can be expressed only as probabilities. 

Dealing with uncertainty is difficult

The distinction between absolute and relative risk reduction is one that many doctors struggle with. Imagine how much more difficult this is for a patient who is unschooled in statistics and may even have some degree of disease-related cognitive impairment.

But appropriate graphics can help. One technique is to represent the number of patients at risk of an outcome, the number who experience that outcome if untreated, the number who experience it even if treated, and the number in whom the outcome is prevented. 

There is moderate evidence on Cochrane Review that DSM stimulates and active role on the part of the patient and improves accuracy in perception of risk.