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Call for a multiperspective approach on patient-reported outcomes to foster personalised Parkinson’s care
In his viewpoint ‘Reduced to a number’, Professor Andrew Lees shares his concern regarding the use of previsit questionnaires in healthcare, based on his long and highly esteemed professional experience as a clinical neurologist and neuroscientist. His message is clear: previsit questionnaires draw the heart of the consultations away from the patient, may de-professionalise doctors, are bothersome for patients and contribute to a healthcare system where legal and financial incentives are valued more than the person behind the patient. Lees goes on to paint a gloomy scenario of the average consultation duration being diminished to only 7 min, leaving both medical specialists and people with Parkinson’s disease unsatisfied. We fully endorse Professor Lees’ call for more personalisation in the midst of changing healthcare systems and the fast-growing numbers of people diagnosed with Parkinson’s disease. However, what we missed in his viewpoint was the perspective of persons living with Parkinson’s disease, who do wish to arrive well prepared at the consultation. Here, we argue that it is essential to take multiple perspectives and needs into consideration, and that pre-consultation preparation using well-developed and well-implemented patient-reported outcome measures (PROMs) can contribute to personalised care management and better Parkinson’s care, even, or perhaps particularly, when you only have 7 min.
Personalised care plans
PROMs aim to capture patients’ perspectives of health, illness and the effects of healthcare interventions in a reliable, valid, acceptable and feasible way.1 Examples of Parkinson-specific standardised PROMs include generic instruments like Parkinson’s Disease Questionnaire-39 (PDQ-39)2 as well as questionnaires that are tailored to a specific disease stage3 4 or type of symptoms.5 Individualised PROMs used in daily practice as ‘conversation opener’ that enable patients to tell their story and support building of the patient–clinician relationship are more common in the field of oncology6 but less documented in Parkinson’s care. …
Contributors All authors contributed equally.
Funding This work was supported by a center of excellence grant of the Parkinson’s Foundation, and research grants of the Gatsby Foundation and Health Holland.
Competing interests None declared.
Provenance and peer review Provenance and peer review. Commissioned. Externally peer reviewed by Simon Lewis, Sydney, Australia.
↵The term hopamine is a self-invented and patient-driven neologism (‘hope of mine’) by Noordegraaf et al 16 and represents the uniquely personal set of hopes, desires, experiences, and skills of each individual with a dopamine deficit. As such, the concept of hopamine - as a reflection of the unique personal characteristics of each person with Parkinson’s disease - supplements that of dopamine, as a reflection of each person’s unique physical characteristics.