Free Standard AU & NZ Shipping For All Book Orders Over $80!
Register      Login
Australian Health Review Australian Health Review Society
Journal of the Australian Healthcare & Hospitals Association
RESEARCH ARTICLE

Health-related quality of life in people with Parkinson’s disease receiving comprehensive care

Sze-Ee Soh A B C I , Meg E. Morris D , Jennifer J. Watts E , Jennifer L. McGinley F and Robert Iansek G H
+ Author Affiliations
- Author Affiliations

A Department of Epidemiology and Preventative Medicine, Monash University, The Alfred Centre, 99 Commercial Road, Melbourne, Vic. 3004, Australia.

B Department of Physiotherapy, Monash University, Building B, Peninsula Campus, McMahons Road, Frankston, Vic. 3199, Australia.

C Physiotherapy Department, Caulfield Hospital, 260 Kooyong Road, Caulfield, Vic. 3162, Australia.

D Physiotherapy, School of Allied Health, La Trobe University, Melbourne Campus, Plenty Road, Bundoora, Vic. 3083, Australia. Email: m.morris@latrobe.edu.au

E School of Health and Social Development, Deakin University, 221 Burwood Highway, Burwood, Vic. 3125, Australia. Email: j.watts@deakin.edu.au

F Physiotherapy Department, The University of Melbourne, Level 7, Alan Gilbert Building, Parkville, Vic. 3052, Australia. Email: mcginley@unimelb.edu.au

G Clinical Research Centre for Movement Disorders and Gait, Kingston Centre, NPF Centre of Excellence, 400 Warrigal Road, Cheltenham, Vic. 3192, Australia. Email: robert.iansek@monash.edu

H School of Clinical Sciences, Monash University, Monash Health, 246 Clayton Road, Clayton, Vic. 3168, Australia.

I Corresponding author. Email: Sze-Ee.Soh@monash.edu

Australian Health Review 40(6) 613-618 https://doi.org/10.1071/AH15113
Submitted: 8 September 2015  Accepted: 8 January 2016   Published: 25 February 2016

Abstract

Objectives The aim of the present study was to quantify the baseline variation in health-related quality of life (HRQOL) between individuals with Parkinson’s disease (PD) referred to a comprehensive care program and those attending standard neurological services.

Methods Participants included individuals with PD receiving conventional care from neurologists in private practice and individuals referred to a comprehensive inter-professional team hospital out-patient service. The Parkinson’s Disease Questionnaire-39 (PDQ-39) and the EuroQoL (EQ-5D-3L) were used to quantify HRQOL.

Results Participants referred to an inter-professional service were more likely to have poorer indices on PD-specific measures but not for generic HRQOL compared with individuals receiving standard neurological services. After adjusting for age, gender, disease severity and duration, people referred to a comprehensive care program were more likely to have a higher score for the PDQ-39 summary index (PDQ-39 SI; mean ± s.d. 27.2 ± 11.0; 95% confidence interval (CI) 25.5, 28.9) compared with individuals receiving standard neurological services (PDQ-39 SI mean 0.2 ± 12.8; 95% CI 18.0, 22.4).

Conclusions Compared with those attending standard neurological out-patient clinics, individuals referred to an inter-professional PD program are more likely to have advanced disease and poorer HRQOL. This observation has implications for the way in which people with PD are recruited for future clinical trials, because uneven recruitment from different sources may be a potential source of bias.

What is known about the topic? Given that PD is associated with a complex array of motor and non-motor symptoms, an inter-professional team approach to service provision is argued to be optimal for individuals living with this debilitating condition.

What does this paper add? This paper has shown that individuals referred to an inter-professional service are more likely to have advanced disease and complex care needs. Compared with those referred to neurologist private clinics, those referred to an inter-professional clinic had less functional independence and lower PD-specific HRQOL when first assessed, even after controlling for disease severity.

What are the implications for practitioners? When recruiting for future trials to examine the efficacy of multidisciplinary care programs in people with PD, it is important to take into account whether these individuals have been referred to an inter-professional service. There may be a potential source of bias if participants were recruited predominantly from such services.


References

[1]  van der Eijk M, Faber MJ, Al Shamma S, Munneke M, Bloem BR. Moving towards patient-centered healthcare for patients with Parkinson’s disease. Parkinsonism Relat Disord 2011; 17 360–4.
Moving towards patient-centered healthcare for patients with Parkinson’s disease.Crossref | GoogleScholarGoogle Scholar | 21396874PubMed |

[2]  Keus SH, Oude Nijhuis LB, Nijkrake MJ, Bloem BR, Munneke M. Improving community healthcare for patients with Parkinson’s disease: the Dutch model. Parkinsons Dis 2012; 2012 1–7.
Improving community healthcare for patients with Parkinson’s disease: the Dutch model.Crossref | GoogleScholarGoogle Scholar |

[3]  Munneke M, Nijkrake MJ, Keus SHJ, Kwakkel G, Berendse HW, Roos RAC, et al Efficacy of community-based physiotherapy networks for patients with Parkinson’s disease: A cluster-randomised trial. Lancet Neurol 2010; 9 46–54.
Efficacy of community-based physiotherapy networks for patients with Parkinson’s disease: A cluster-randomised trial.Crossref | GoogleScholarGoogle Scholar | 19959398PubMed |

[4]  Rochester L, Nieuwboer A, Lord S. Physiotherapy for Parkinson’s disease: defining evidence within a framework for intervention. Neurodegener Dis Manag 2011; 1 57–65.
Physiotherapy for Parkinson’s disease: defining evidence within a framework for intervention.Crossref | GoogleScholarGoogle Scholar |

[5]  Prizer LP, Browner N. The integrative care of Parkinson’s disease: a systematic review. J Parkinsons Dis 2012; 2 79–86.
| 23939435PubMed |

[6]  Nijkrake MJ, Keus SH, Oostendorp RA, Overeem S, Mulleners W, Bloem BR, et al Allied health care in Parkinson’s disease: referral, consultation, and professional expertise. Mov Disord 2009; 24 282–6.
Allied health care in Parkinson’s disease: referral, consultation, and professional expertise.Crossref | GoogleScholarGoogle Scholar | 19170189PubMed |

[7]  Nijkrake MJ, Keus SH, Overeem S, Oostendorp RA, Vlieland TP, Mulleners W, et al The ParkinsonNet concept: development, implementation and initial experience. Mov Disord 2010; 25 823–9.
The ParkinsonNet concept: development, implementation and initial experience.Crossref | GoogleScholarGoogle Scholar | 20461798PubMed |

[8]  Patti J, Reggio A, Nicoletti F, Sellaroli T, Deinite G, Nicoletti F. Effects of rehabilitation therapy on Parkinsonians’ disability and functional independence. J Neurol Rehabil 1996; 10 223–31.
Effects of rehabilitation therapy on Parkinsonians’ disability and functional independence.Crossref | GoogleScholarGoogle Scholar |

[9]  Carne W, Cifu D, Marcinko P, Pickett T, Baron M, Qutubbudin A, et al Efficacy of a multidisciplinary treatment program on one-year outcomes of individuals with Parkinson’s disease. NeuroRehabilitation 2005; 20 161–7.
| 16340097PubMed |

[10]  Carne W, Cifu DX, Marcinko P, Baron M, Pickett T, Qutubuddin A, et al Efficacy of multidisciplinary treatment program on long-term outcomes of individuals with Parkinson’s disease. J Rehabil Res Dev 2005; 42 779–86.
Efficacy of multidisciplinary treatment program on long-term outcomes of individuals with Parkinson’s disease.Crossref | GoogleScholarGoogle Scholar | 16680615PubMed |

[11]  Trend P, Kaye J, Gage H, Owen C, Wade D. Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers. Clin Rehabil 2002; 16 717–25.
Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers.Crossref | GoogleScholarGoogle Scholar | 12428820PubMed |

[12]  Wade DT, Gage H, Owen C, Trend P, Grossmith C, Kaye J. Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study. J Neurol Neurosurg Psychiatry 2003; 74 158–62.
Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD3s%2FlslSrtA%3D%3D&md5=60f62b1bec74df9cc8b363a4143e4616CAS | 12531939PubMed |

[13]  van Nimwegen M, Speelman AD, Overeem S, van de Warrenburg BP, Smulders K, Dontje ML, et al Promotion of physical activity and fitness in sedentary patients with Parkinson’s disease: randomised controlled trial. BMJ 2013; 346 f576
Promotion of physical activity and fitness in sedentary patients with Parkinson’s disease: randomised controlled trial.Crossref | GoogleScholarGoogle Scholar | 23457213PubMed |

[14]  van der Marck MA, Munneke M, Mulleners W, Hoogerwaard EM, Borm GF, Overeem S, et al Integrated multidisciplinary care in Parkinson’s disease: a non-randomised, controlled trial (IMPACT). Lancet Neurol 2013; 12 947–56.
Integrated multidisciplinary care in Parkinson’s disease: a non-randomised, controlled trial (IMPACT).Crossref | GoogleScholarGoogle Scholar | 23988337PubMed |

[15]  Morris ME, Menz HB, McGinley JL, Huxham FE, Murphy AT, Iansek R, et al Falls and mobility in Parkinson’s disease: protocol for a randomised controlled clinical trial. BMC Neurol 2011; 11 93
Falls and mobility in Parkinson’s disease: protocol for a randomised controlled clinical trial.Crossref | GoogleScholarGoogle Scholar | 21801451PubMed |

[16]  Morris ME, Watts JJ, Iansek R, Jolley D, Campbell D, Murphy AT, et al Quantifying the profile and progression of impairments, activity, participation, and quality of life in people with Parkinson disease: protocol for a prospective cohort study. BMC Geriatr 2009; 9 2
Quantifying the profile and progression of impairments, activity, participation, and quality of life in people with Parkinson disease: protocol for a prospective cohort study.Crossref | GoogleScholarGoogle Scholar | 19152709PubMed |

[17]  Folstein MF, Folstein SE, McHugh PR. Mini-mental state: practical method for grading cognitive state of patients for clinician. J Psychiatr Res 1975; 12 189–98.
Mini-mental state: practical method for grading cognitive state of patients for clinician.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaE28%2FntFKjtw%3D%3D&md5=91ead73bec6d493b478702cfab4f8c04CAS | 1202204PubMed |

[18]  Hoehn MM, Yahr MD. Parkinsonism: onset, progression and mortality. Neurology 1967; 17 427–42.
Parkinsonism: onset, progression and mortality.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaF2s7jvFSgsg%3D%3D&md5=96cdae230b7a1c3e2e9a538163f699f7CAS | 6067254PubMed |

[19]  Fahn S, Elton R, UPDRS Development Committee. Unified Parkinson’s disease rating scale. In: Fahn S, editor. Recent developments in Parkinson’s disease. 1st edn. New York: MacMillan; 1987. pp. 153–63.

[20]  Podsiadlo D, Richardson S. The timed up and go: a test of basic functional mobility for frail elderly persons. J Am Geriatr Soc 1991; 39 142–8.
The timed up and go: a test of basic functional mobility for frail elderly persons.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DyaK3M7itlKgsA%3D%3D&md5=7cd6a34015e59b8a691bd521335cdba3CAS | 1991946PubMed |

[21]  Martinez-Martin P, Jeukens-Visser M, Lyons KE, Rodriguez-Blazquez C, Selai C, Siderowf A, et al Health-related quality-of-life scales in Parkinson’s disease: critique and recommendations. Mov Disord 2011; 26 2371–80.
Health-related quality-of-life scales in Parkinson’s disease: critique and recommendations.Crossref | GoogleScholarGoogle Scholar | 21735480PubMed |

[22]  Soh S-E, McGinley JL, Morris ME. Measuring quality of life in Parkinson’s disease: selection of an appropriate health-related quality of life instrument. Physiotherapy 2011; 97 83–9.
Measuring quality of life in Parkinson’s disease: selection of an appropriate health-related quality of life instrument.Crossref | GoogleScholarGoogle Scholar | 21295243PubMed |

[23]  Dowding CH, Shenton CL, Salek SS. A review of the health-related quality of life and economic impact of Parkinson’s disease. Drugs Aging 2006; 23 693–721.
A review of the health-related quality of life and economic impact of Parkinson’s disease.Crossref | GoogleScholarGoogle Scholar | 17020395PubMed |

[24]  Marinus J, Ramaker C, van Hilten JJ, Stiggelbout AM. Health related quality of life in Parkinson’s disease: a systematic review of disease specific instruments. J Neurol Neurosurg Psychiatry 2002; 72 241–8.
Health related quality of life in Parkinson’s disease: a systematic review of disease specific instruments.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD38%2FntVOjsA%3D%3D&md5=9577a1ae6cd82ea9f498b13ae6c66ca8CAS | 11796776PubMed |

[25]  Szende A, Oppe M, Devlin N, editors. EQ-5D value sets: inventory, comparative review and user guide. The Netherlands: Springer; 2007.

[26]  Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development and validation of a short measure of functioning and well-being for individuals with Parkinson’s disease. Qual Life Res 1995; 4 241–8.
| 1:STN:280:DyaK2MzjvVWqug%3D%3D&md5=208c69a74da37d370ed775c83ef0d0a2CAS | 7613534PubMed |

[27]  Williams A. Euroqol: A new facility for the measurement of health-related quality of life. Health Policy 1990; 16 199–208.

[28]  van der Marck MA, Bloem BR, Borm GF, Overeem S, Munneke M, Guttman M. Effectiveness of multidisciplinary care for Parkinson’s disease: a randomized, controlled trial. J Mov Disord Soc 2013; 28 605–11.
Effectiveness of multidisciplinary care for Parkinson’s disease: a randomized, controlled trial.Crossref | GoogleScholarGoogle Scholar |

[29]  Kahan BC, Rehal S, Cro S. Risk of selection bias in randomised trials. Trials 2015; 16 405
Risk of selection bias in randomised trials.Crossref | GoogleScholarGoogle Scholar | 26357929PubMed |

[30]  Picillo M, Kou N, Fasano A, Barone P. Recruitment strategies and patient selection in clinical trials for Parkinson’s disease: going viral and keeping science and ethics at the highest standards. Parkinsonism Relat Disord 2015; 21 1041–8.
Recruitment strategies and patient selection in clinical trials for Parkinson’s disease: going viral and keeping science and ethics at the highest standards.Crossref | GoogleScholarGoogle Scholar | 26228079PubMed |

[31]  Gomez-Esteban JC, Zarranz JJ, Lezcano E, Tijero B, Luna A, Velasco F, et al Influence of motor symptoms upon the quality of life of patients with Parkinson’s disease. Eur Neurol 2007; 57 161–5.
| 1:STN:280:DC%2BD2s7ksFGhuw%3D%3D&md5=c4c36a5a88cbe55e0b02c71f518c3810CAS | 17213723PubMed |

[32]  Global Parkinson’s Disease Survey (GPDS) Steering Committee Factors impacting on quality of life in Parkinson’s disease: results from an international survey. Mov Disord 2002; 17 60–7.
| 11835440PubMed |

[33]  Soh S-E, Morris ME, McGinley JL. Determinants of health-related quality of life in Parkinson’s disease: a systematic review. Parkinsonism Relat Disord 2011; 17 1–9.
Determinants of health-related quality of life in Parkinson’s disease: a systematic review.Crossref | GoogleScholarGoogle Scholar | 20833572PubMed |

[34]  Tickle-Degnen L, Ellis T, Saint-Hilaire MH, Thomas CA, Wagenaar RC. Self-management rehabilitation and health-related quality of life in Parkinson’s disease: a randomized controlled trial. Mov Disord 2010; 25 194–204.
Self-management rehabilitation and health-related quality of life in Parkinson’s disease: a randomized controlled trial.Crossref | GoogleScholarGoogle Scholar | 20077478PubMed |

[35]  Canning GC, Sherrington RC, Lord CTS, Close ZJ, Heritier ES, Heller DG, et al Exercise for falls prevention in Parkinson disease: a randomized controlled trial. Neurology 2015; 84 304–12.
Exercise for falls prevention in Parkinson disease: a randomized controlled trial.Crossref | GoogleScholarGoogle Scholar |

[36]  Hill A-M, Waldron N, Etherton-Beer C, McPhail SM, Ingram K, Flicker L, et al A stepped-wedge cluster randomised controlled trial for evaluating rates of falls among inpatients in aged care rehabilitation units receiving tailored multimedia education in addition to usual care: a trial protocol. BMJ Open 2014; 4 e004195
A stepped-wedge cluster randomised controlled trial for evaluating rates of falls among inpatients in aged care rehabilitation units receiving tailored multimedia education in addition to usual care: a trial protocol.Crossref | GoogleScholarGoogle Scholar | 24430881PubMed |

[37]  Parashos SA. Challenges of multidisciplinary care in Parkinson’s disease. Lancet Neurol 2013; 12 932–3.
Challenges of multidisciplinary care in Parkinson’s disease.Crossref | GoogleScholarGoogle Scholar | 23988336PubMed |

[38]  Johnston M, Chu E. Does attendance at a multidisciplinary outpatient rehabilitation program for people with Parkinson’s disease produce quantitative short term or long term improvements? A systematic review. NeuroRehabilitation 2010; 26 375–83.
| 20555161PubMed |

[39]  van der Marck MA, Kalf JG, Sturkenboom IHWM, Nijkrake MJ, Munneke M, Bloem BR. Multidisciplinary care for patients with Parkinson’s disease. Parkinsonism Relat Disord 2009; 15 S219–23.
Multidisciplinary care for patients with Parkinson’s disease.Crossref | GoogleScholarGoogle Scholar | 20082995PubMed |