Session Information
Date: Monday, September 23, 2019
Session Title: Quality of Life
Session Time: 1:45pm-3:15pm
Location: Les Muses Terrace, Level 3
Objective: To assess the impact of clinical care coordination on patient quality of life in the Atypical Parkinsonism clinic.
Background: The Atypical Parkinsonian Syndromes of Progressive Supranuclear Palsy (PSP) and Multiple System Atrophy (MSA) are progressive neurodegenerative disorders for which no disease-modifying treatments are currently available. Management therefore focuses on symptom control and optimizing quality of life. It is increasingly suggested that multidisciplinary input is a key aspect of care. In May 2017 a clinical coordinator (an experienced neurological physiotherapist) was appointed to the Atypical Parkinsonism service in Southampton, UK with the aim of improving multidisciplinary care. We subsequently sought to assess their impact on patient quality of life.
Method: Service evaluations were conducted in May 2017 and June 2018. All patients attending the clinic were invited to participate by post and complete a demographics and disease specific quality of life questionnaire – either the PSP-QOL[1] or MSA-QOL[2]. Some responses received were anonymous. Results were collated and changes in quality of life scores were analysed using the paired t-test.
Results: Qualitative feedback on the coordinator role was particularly positive with a median satisfaction score from patients of 8.5/10. In those with PSP, median overall quality of life scores improved from 59 (n=25) to 42 (n=18) between evaluations. In 6 patients who participated in both evaluations, median overall quality of life scores improved from 38 to 35 (p=0.404), with particular improvements in the mental subset from 38 to 29 (p=0.094) but not the physical subset which increased from 38 to 39 (p=0.756). In patients with MSA, median overall quality of life scores were comparable between evaluations at 55 (n=8) and 54 (n=6). 4 patients participated in both evaluations and showed a worsening in median overall quality of life scores from 50 to 63 (p=0.584).
Conclusion: Our data suggest that clinical coordination may have a positive impact on patient quality of life, particularly mental wellbeing, in PSP. One would expect quality of life scores to deteriorate over time and hence we believe that even stabilisation in quality of life scores is meaningful, despite these results not being statistically significant. We therefore recommend further research into this promising intervention.
References: 1. Shrag A, Selai C, Quinn N et al. Measuring quality of life in PSP. The PSP-QoL. Neurology 2006;67:39–44 2. Shrag A, Selai C, Mathias C et al. Measuring health-related quality of life in MSA: The MSA-QoL. Neurology 2007;22:2332-2338
To cite this abstract in AMA style:
M. Harris, J. Donnelly, L. Massey, B. Ghosh. The impact of clinical care coordination on patient quality of life in the Atypical Parkinsonism clinic [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/the-impact-of-clinical-care-coordination-on-patient-quality-of-life-in-the-atypical-parkinsonism-clinic/. Accessed June 14, 2025.« Back to 2019 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/the-impact-of-clinical-care-coordination-on-patient-quality-of-life-in-the-atypical-parkinsonism-clinic/