S B Rochow, A D Blackwell*, V J Brown* Dept Of Medicine, Victoria Hospital, Kirkcaldy, Fife *School of Psychology, University of St Andrews, St Andrews, Fife
Correspondence to: Dr S Rochow, c/o ward 12, Victoria Hospital, Kirkcaldy, Fife, KY2 5AH Tel; 01592 643355
E-mail; stuart.rochow@faht.scot.nhs.uk
SMJ 2005 50(1): 18-20
Abstract:
Objectives: to determine the effect of attending a movement disorders (MD) clinic on quality of life (QOL) outcomes for patients with Parkinson’s disease (PD). Methods: Postal questionnaire study of forty-two patients with Parkinson’s disease attending either a movement disorders clinic or more conventional general medical clinic were selected consecutively to complete the Parkinson’s Disease Quality of Life Questionnaire (PDQL). All patients were diagnosed by a consultant physician with an interest in Parkinson’s disease (S.B.R.) and had attended either the movement disorders clinic or the general medical clinic on at least three occasions. Questionnaires were completed independently of the examiners and returned by post. Results: Mean PDQL score was 124.1 [5.16] in the movement disorders clinic and 95.9 [5.86] in the general medical clinic. Analysis of covariance revealed that those subjects attending the MD clinic reported a significantly higher QOL than those subjects in general medical care (F(1,39)= 161.98, P<0.001). Conclusion: These data indicate that the quality of life of respondents attending the movement disorders clinic is significantly higher than those attending the general medical clinic.
Introduction
Parkinson’s disease (PD) is a progressive, disabling and distressing illness which has a major adverse impact on the quality of life of the sufferer.1 The degree of disability in PD sufferers can fluctuate wildly, sometimes over the course of a day, particularly in the later stages of disease progression. Continuity of care and flexible service approach are vital for these patients and their carers. Conventional health services are not normally able to cater for this need. This has led to the development of ‘Movement Disorders Clinics’ that have become increasingly widespread throughout the UK over the past decade. Although there is some evidence relating to the costeffectiveness of such care strategies,2 research to date has failed to assess the clinical effectiveness of such strategies in relation to the quality of life of patients. The Parkinson’s Disease Quality of Life Questionnaire (PDQL) is a patient specific multi-dimensional quality of life measure containing 37 items in four sub-scales: parkinsonian symptoms (14 items), systemic symptoms (7 items), social functioning (7 items) and emotional functioning (9 items). Scores range from 37 (low QOL) to 185 (high QOL). It has been validated elsewhere as an effective measure of quality of life in patients with Parkinson’s disease.3,4 In 1997 a Movement Disorders Clinic was established in Kirkcaldy as a pilot project to serve the local population of around 60,000. This was supported by funding for a part-time nurse specialist and dedicated time for allied health professionals. Patients with Parkinson’s disease from the rest of Fife were not able to access this service until 2001 but continued to be referred to the General Medical Clinic also supervised by the main investigator (SBR). Both clinics were held in the medical outpatients department. This enabled this comparative quality of life study to take place.
Methods
Subjects Between October 2000 and October 2001 42 patients with Parkinson’s disease were recruited to the study. All patients were diagnosed by an experienced clinician with a special interest in Parkinson’s disease (SBR). During the study period all patients who met the Parkinson’s Disease Society Brain Bank Criteria,5 who did not have cognitive impairment or clinical depression and who had attended either the MD clinic or general medical clinic on at least three occasions were invited to take part. Each patient was issued with a PDQL questionnaire and given simple instruction on its use. Patients then took the questionnaire home and completed it in their own time. Assistance from a relative or other carer was allowed. Completed questionnaires were returned by post. Disease severity was assessed using the Hoehn and Yahr scale, stage I representing mild disease through to stage V; very severe disease.6 Cognitive function was evaluated using the Abbreviated Mental Test (AMT; 0-10) with a cut off figure of 7.7 Age of patients, disease duration, comorbidity and living arrangements were also recorded. It is routine practise locally to ask PD patients about depressive symptoms. Patients with evident clinical depression as assessed by a senior clinician or who were taking antidepressant medication were not invited to take part in the study. Statistical analysis was conducted using SPSS for windows version 10.0 (SSPS inc.). Group differences were analysed using one-way analysis of variance (ANOVA) or non-parametric statistics where appropriate.
Results
All selected patients agreed to take part and all returned a completed questionnaire. Descriptive statistics for both subject groups can be found in Table I showing that they are broadly comparable. Analysis revealed no significant differences between subject groups in terms of age, duration of illness, or level of general cognitive function (p>0.05). Those patients in the general medical group were, on average, suffering a marginally greater degree of disease severity (as indexed by Hoehn/Yahr rating) than the MD clinic attendees (c2(3) = 11.91, p<0.05); accordingly disease severity is included as a covariate in subsequent analyses. Comorbidity and living arrangements were similar in both groups. Figure 1 shows mean reported quality of life scores for each of the subcategories of the PDQL. Taking all measures together, mean composite PDQL score was 124.1 [5.16] in the movement disorders group and 95.9 [5.86] in the general medical group. Analysis of Covariance was used to compare QOL ratings on each of the four measures whilst taking account of differences attributable to disease severity. The results indicate that those subjects attending the MD clinic reported a significantly higher QOL than those subjects in general medical care across all measures (F(1,39)= 161.98, p<0.001). The lack of a significant treatment group x QOL measure interaction effect (F(1,39) = 3.85, p= 0.57) indicates that the effect of treatment group was similar for each of the four sub-measures of QOL. The results suggest that those patients attending a dedicated movement disorders clinic enjoy a significantly better quality of life than those attending general medical clinics as indexed by self-reporting with the PDQL.
Discussion
The first MD clinic was set up over ten years ago8 and this has gradually been adopted as the model of best practice for PD patients not only across the UK but also in countries such as Sweden, Australia and the USA. However, access to such clinics remains inequitable; improved access to such facilities will be facilitated by the publication of empirical evidence supporting their efficacy. One critical measure of the efficacy of a treatment strategy is the benefit to the patient in terms of the impact attendance has on their quality of life. The present study has demonstrated that attending a movement disorders clinic can have a significant positive impact on the quality of life of patients suffering from Parkinson’s disease (as indexed by self-report on the PDQL). To our knowledge, no previous similar study has been published.
In order to understand how such benefits in terms of quality of life are achieved, it is important to consider how the experience of attendance at a MD clinic differs from that of a general medical clinic. The successful operation of the PD clinic is underpinned by the support of a Parkinson’s disease Nurse Specialist (PDNS). The PDNS coordinates the activity of a multidisciplinary team of individuals caring for individuals with Parkinson’s disease.9,10 This multidisciplinary approach encompasses referral and diagnosis, education, drug therapy, occupational therapy, physiotherapy, together with dietary and social support where appropriate. The MD clinic also facilitates the establishment of partnerships with patients, a practice generally agreed to be central to effective disease control.11 Therapists focus upon controlling symptoms, especially motor symptoms that can account for some of the variance in QOL.12 New referrals to our MD clinic routinely received a baseline assessment by a physiotherapist and an occupational therapist, both of whom have a special interest in PD. If necessary, patients are visited at home and are actively encouraged to carry out maintenance physiotherapy in their own time. All patients and carers are given a telephone ‘hotline’ to contact the nurse specialist between appointments for advice or other support when needed.
The general medical patients were attended to by the same Consultant and drug therapy optimised. These patients did not differ significantly from the MD group in terms of age, sex or social circumstances. However, the possibility of observer bias still cannot be conclusively excluded. The small numbers precluded a formal postcode analysis but it was felt that the catchment populations were comparable overall, however we cannot rule out that this may have influenced the results. Based on the clinical impression of an experienced clinician, none of the patients showed evidence of clinical depression, nor were any on antidepressant treatment, however we cannot exclude the possibility that this was missed in some patients though would be equally by chance in both groups.
In summary, our study indicates that patients attending a movement disorders clinic enjoy a better quality of life (as indexed by PDQL) than those attending a more conventional outpatient clinic. It is suggested that part of the reason for these benefits is attributable to a cohesive multidisciplinary approach with improved patient-clinician partnerships. Within the design constraints of the study it is not possible to establish which intervention made an impact on the QOL scores. Nevertheless, we feel that this study adds evidence to back up the established consensus that most PD patients are best seen in movement disorder clinics. We could find no similar published data. The study was limited by small sample size and highlights the need for a larger randomised study subject powered to take full account of variables.
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