Patient-centered Parkinson's care: Why good medicine is about more than optimizing medication
Germany has a high level of neurological expertise, modern clinical guidelines, and increasingly interdisciplinary care networks. But how do people living with Parkinson's actually experience this care?
From my many years of experience as a neurologist, I know that good care means much more to patients than simply having access to specialized treatment. What truly matters is whether they feel heard, receive guidance, and whether their treatment takes their individual challenges in everyday life into account.
For many people, the journey to a Parkinson's diagnosis is long and emotionally demanding. In particular, younger patients often describe seeing numerous healthcare professionals before their symptoms are correctly recognized. A nationwide German survey found that around half of all people with Parkinson's waited a year or longer before receiving their diagnosis. ¹
Receiving the diagnosis itself is a life-changing moment. Many people remember for the rest of their lives the conversation in which Parkinson's disease was first suspected or confirmed. That is why it is so important to take the time to have this conversation and to convey the message with empathy and sensitivity. A diagnosis raises questions, creates uncertainty, and changes the way people look at their future. At the same time, many of my patients also describe feeling relieved that their symptoms finally have an explanation and that targeted treatment can begin. Today, a broad range of pharmacological and non-pharmacological therapies is available, helping to alleviate many of the symptoms associated with Parkinson's disease.
Once treatment begins, patients' priorities often change. The focus is no longer solely on the treatment itself but on maintaining independence and quality of life for as long as possible. This highlights why good Parkinson's care must go beyond medication alone. At the same time, many of the less visible symptoms are often underestimated. Fatigue, sleep disturbances, and cognitive difficulties can have a profound impact on quality of life. Added to this are motor fluctuations, which can make everyday life unpredictable. I often try to imagine what it would feel like not knowing in the morning whether I would be able to keep an appointment later that afternoon because a sudden Off-period might occur despite previously good mobility. It is difficult to fully appreciate how challenging this uncertainty can be.
Motor fluctuations present a particular challenge because we often see our patients for only a few minutes during a consultation or a hospital round. Yet symptoms can change considerably throughout the day, meaning that the clinical picture we observe does not always reflect the patient's actual experience in everyday life. When memory problems are also present, many patients find it difficult to reliably describe these daily fluctuations. Even symptom questionnaires can become overwhelming in such situations.
In the inpatient setting, observations made by nurses and therapists provide valuable additional snapshots that complement the clinical picture. Even so, the better we understand these day-to-day fluctuations, the more individualized our treatment decisions can become. Increasingly, there is discussion about how objective information on symptom progression between appointments or outside the hospital rounds can meaningfully complement clinical assessment. Not as a replacement for the conversation between doctor and patient, but as an additional source of information that helps tailor care more closely to each person's individual needs.
Another topic I hear about very frequently is the desire for more information. Many people with Parkinson's want to better understand the treatment options available to them, how their disease may progress, and what forms of support exist beyond medical care. Recent studies show that these aspects are also key contributors to truly patient-centered care. ²
Germany has an excellent foundation for continuing to advance Parkinson's care. From my perspective, the next step is to integrate medical expertise even more closely with the lived experiences of people with Parkinson's. Because excellent Parkinson's care is defined not only by the treatments available, but also by how well we understand what life with Parkinson's is really like for each individual.
About PD Dr. Annette Rogge
PD Dr. Annette Rogge is a board-certified neurologist and a trainer for ethics consultation in healthcare. Throughout her career, she has worked for many years at Segeberger Kliniken on its specialized Parkinson's disease and movement disorders unit and has served as Head of Neurology at Nordseeklinik Helgoland. Her academic work at Kiel University included research in Professor Daniela Berg's group, focusing on the ethics of patient counseling and disclosure in the early stages of Parkinson's disease.
Sources:
S. Binder, S. Groppa, D. Woitalla, T. Müller, I. Wellach, J. Klucken, C. Eggers, S. Liersch, V. Amelung, “Patientenperspektive auf die Versorgungssituation im Krankheitsbild Morbus Parkinson in Deutschland – eine Querschnittserhebung,” Aktuelle Neurologie 2018; 45(10): 703 - 713, https://doi.org/10.1055/a-0624-1671
T. Krieger, L. Jozwiak, G. Ebersbach, T. Suess, B. Falkenburger, T. Feige, C. Eggers, T. Warnecke, W. Scholl, C. Schmidt-Heisch, A. Folkerts, E. Kalbe, Ü. Seven, “Exploring the lived experiences of individuals with Parkinson’s disease and their relatives: insights into care provision experiences, disease management support, self-management strategies, and future needs in Germany (qualitative study),” BMC Neurology (2024) 24:208, https://doi.org/10.1186/s12883-024-03696-y