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Increasingly, many centres around the world are delivering multidisciplinary care for patients with Parkinson's disease (PD).1 2 Indeed, a multidisciplinary team approach currently seems inevitable for anyone who understands even a little about PD. After all, this really is a wretched disorder, with a complex and diverse phenotype. Patients become progressively incapacitated, not only because of the well known motor symptoms (bradykinesia, rigidity, tremor, gait impairment and postural instability), but also because of a wide variety of non-motor symptoms. These include neuropsychiatric disorders (cognitive disturbances, hallucinations, psychosis), sleep disorders (insomnia, rapid eye movement sleep behaviour disorder, periodic leg movements), autonomic dysfunction (orthostatic hypotension, constipation, urinary incontinence, erectile dysfunction) and pain from various sources (eg, central pain, painful off period dystonia). Not surprisingly, PD is regarded by patients as one of the most unbearable disorders around, ranked second on the respective lists for both motor and cognitive disorders.3 Perhaps even more telling is the fact that many immediate caregivers are on the brink of succumbing to the pressure of living with someone with PD.4–6 Moreover, conventional therapies—drug treatment and stereotactic deep brain surgery—offer only partial and temporary relief, particularly in more advanced disease.7 Against this background, any neurologist who still feels that a single discipline suffices to combat this debilitating disease must seem almost heartless, or at least a bit naive. And any potential critics should be consoled by the fact that multidisciplinary care has already won its spurs in other areas of neurology—for example, stroke units.8
Luckily for PD patients, help is on the way. Evidence is growing to support the effectiveness of various allied health disciplines. Thus far, the case is strongest for specific physiotherapy techniques, such as cueing.9 But there are also practice based guidelines—from accumulating research evidence, or sometimes merely expert clinical opinion—that recommend speech and language therapy, and occupational therapy.10 11 And a growing number of clinicians seem undisturbed by the fact that allied health treatments are not fully evidence based. After all, lack of evidence of effect is not proof of lack of effect,12 and the patients are clearly in great need. This is why many PD patients are currently receiving physiotherapy,13 and why referrals to other allied health disciplines seem to be rising in popularity too, albeit more modestly.14 One can reasonably argue that neurologists may need to wait for more evidence before referring their patients but we are being overtaken by the facts. Indeed, despite the relatively low level of evidence, several guidelines recommend that PD patients should have regular access to a broad range of medical and allied healthcare professionals.15 16
So the question really becomes how one should combine conventional medical management with allied health treatment in order to deliver an efficient and well coordinated multidisciplinary team effort in clinical practice. Here things start to become somewhat problematic. Is multidisciplinary care simply the sum of a series of monodisciplinary interventions which can each be delivered to the patient independently? Or should every participating discipline be integrated into a streamlined team approach, working under one roof with a single, dedicated coordinator? Which disciplines should be part of this team and what is best for patients: a one size-fits all treatment or an individually tailored approach? Nobody knows for sure, and perhaps as a result, the nature of multidisciplinary treatment varies widely across countries, and even between centres within a given country.1
Several additional vexing problems came to light when we recently developed a new multidisciplinary guideline for the management of patients with PD.16 As part of the process, we started out by questioning all relevant stakeholders about the perceived barriers in current clinical practice in The Netherlands. Regardless of the specific type of multidisciplinary approach that was chosen, four key problems stuck out (table 1). The same shortcomings were also identified in a separate survey among allied health professionals in The Netherlands.14 This situation is unlikely to be unique to our country, and we suspect that many multidisciplinary teams worldwide are troubled by similar problems.
More importantly, we fear that the barriers mentioned in table 1 may explain why the three trials of multidisciplinary care in PD thus far have failed to demonstrate robust or sustained benefits for patients and their families.17
The first was a cross over, randomised trial that evaluated multidisciplinary intervention with individualised physiotherapy, occupational therapy, speech therapy, specialised nursing and group educational support.18 There was improvement in mobility directly after the programme but worse general and mental health. The benefits on mobility had disappeared 6 months later. Moreover, caregivers of treated patients unexpectedly showed a trend towards more strain. Extrapolating the Dutch findings, we suspect that the multidisciplinary team was perhaps not optimally coordinated, and this could have led to more stress on caregivers, rather than relief of pressure.
The second evaluated the effect of group education combined with personal rehabilitation for 8 weeks, delivered by a team consisting of a movement disorders neurologist, physiotherapist, occupational therapist, dietician, psychologist and nurse.19 Directly after the intervention, quality of life, activities of daily living and motor signs had improved. Whether and how long these improvements then persisted was not studied.
In the third study,20 patients were randomised to a 6 week intervention with no hours of rehabilitation (control group), 16 h of rehabilitation or 28 h of rehabilitation. The rehabilitation programme was a group session, followed by self-management and one individual home training. The multidisciplinary team consisted of a physiotherapist, occupational therapist and a speech and language therapist. Directly after the programme, 54% of the patients in the intervention groups experienced a clinically significant improvement in quality of life compared with only 18% in the control group. At 2 months, the proportion of responders was 34% (intervention) and 20% (control), while at 6 months this was 38% (intervention) and 10% (control), suggesting a sustained response.
So what should be done next? We foresee a two pronged approach. The first is to gather more evidence from well designed and large randomised trials. We are aware of two such studies, one of which is complete (preliminary positive results but published thus far only in abstract21) and one which is ongoing in our own centre.22 This latter study is a large (n=299) cluster randomised trial to evaluate the effectiveness and costs of integrated multidisciplinary care in PD compared with usual (typically monodisciplinary) care. The results will be available later this year. These and any future studies need to accommodate the slowly progressive nature of PD, addressing the need for low intensity maintenance after specific treatment goals have been reached. New trials will also need to use sensitive clinical rating scales that can reliably measure relevant changes in quality of life and disability.
Pending more evidence, the second approach is to optimise the current delivery of multidisciplinary care in everyday clinical practice. Here the focus should be on eliminating the four factors identified earlier as being the main barriers (table 1). For this purpose, we have developed the ParkinsonNet healthcare concept, a series of professional regional networks within the catchment area of community hospitals.23 24 ParkinsonNet has several specific aims (table 2). This new approach started in a single region in The Netherlands in 2004 but has now reached complete nationwide coverage (figure). We put this concept to the test for one specific discipline (physiotherapy) in a cluster randomised trial. The results showed an improved quality of care (eg, better knowledge of guidelines and higher patient volumes per therapist) but health outcomes did not change. This lack of efficacy was likely due to the design of the trial which was really an implementation study. In the intervention regions, the choice of either a ParkinsonNet trained therapist or a regular therapist (ie, not specifically trained in PD) was left to the patients, and since only 30% of patients opted for the experts, the study was not optimally designed to study efficacy. However, healthcare costs were reduced in ParkinsonNet clusters compared with usual care clusters. These findings demonstrate that the quality of care can be improved while costs can be contained.
The challenge is now to extend this expertise to include multiple disciplines, and to test the merits in new clinical trials. A further challenge is to involve patients more closely in the healthcare process, empowering them to actively participate in the management of their own disease. Effective multidisciplinary care for PD comes with the recognition that patients and their advocates are indispensable members of the healthcare team, with an important role in decision making. To enable PD patients to participate, they need to learn how to obtain reliable information about their condition, and which healthcare professionals may potentially contribute to their specific health questions.
In recent years, small steps towards greater patient centredness have been made. PD patients who perceived higher involvement in their treatment were more compliant with their medical treatment and more satisfied.25 The perceptions of what patients perceive as their most troublesome symptoms shows wide interindividual variability, and patients' views often deviate from those of their clinicians.26 In addition, patients have diverse expectations about whether their treatment can be called successful, highlighting the importance of individual patient preferences in evaluating their clinical outcomes.27
We hope that this comprehensive approach will be supported by sound scientific evidence for an integrated multidisciplinary team for patients with PD and their families.
Competing interests None.
Provenance and peer review Not commissioned, not externally peer reviewed.
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