Supplements Parkinson’s Disease: Quality Assessment and Improvement of Care
Part 1: Pathophysiology, Symptoms, Burden, Diagnosis, and Assessment
Instruments to measure patient HRQOL provide more specific information on health burden and total disease impact, and can be used to supplement clinical scales.6 One of the most commonly used is the Parkinson’s Disease Questionnaire-39 (PDQ- 39), which is an 8-dimension, disease-specific instrument. It has good internal consistency, retest reliability, construct validity, and sensitivity; it is able to discriminate between levels of severity and is sensitive to changes that matter to the patient but are not the main focus of the clinician.6 Although considered the tool of choice,6 some clinicians have found that the HRQOL utility of PDQ-39 is confounded by motor and nonmotor assessments.
Other HRQOL instruments specific to PD and that may be useful are the Parkinson’s Impact Scale and Parkinson’s Disease Quality of Life Scale.6
The number of cases of PD will increase dramatically in the future, accompanied by a rise in medical resource utilization and healthcare costs. Studies have shown difficulties in diagnosing PD and poor recognition of its disabling nonmotor symptoms, suggesting the need to enhance awareness of techniques for both diagnosing and monitoring this disease. More and more patients with PD will be seen by the clinician in years to come, and accurate diagnosis increases the chance of effective treatment and reduced disability over time, which reduces direct and indirect healthcare costs. The comorbid neuropsychiatric nonmotor symptoms of PD, such as depression and cognitive impairment, are particularly important, because they may be more disabling to the patient than motor symptoms. Screening for neuropsychiatric symptoms, and their effective treatment and monitoring, will improve the functioning and HRQOL of the patient with PD, which are primary goals of management.
Author Affiliations: University of Pennsylvania, Philadelphia, PA (DW, SH); Philadelphia Veterans Administration, Philadelphia, PA (DW); Rush University Medical Center, Chicago, IL (CLC).
Funding Source: This supplement was supported by Boehringer Ingelheim.
Author Disclosures: Grant/research support: Boehringer Ingelheim (DW, CLC); Solvay (CLC); Consultant: Boehringer Ingelheim (DW), Cephalon (CLC), Jazz (CLC), Novartis (DW), UCB (CLC), Valeant (CLC). The author (SH) reports no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.
Authorship Information: Concept and design (DW, CLC, SH); drafting of the manuscript (DW, CLC, SH); critical revision of the manuscript for important intellectual content (DW, CLC, SH).
Address Correspondence to: Cynthia L. Comella, MD, FAAN, Professor of Neurological Sciences, Rush University Medical Center, 1725 W Harrison St, Ste 755, Chicago, IL 60612. E-mail: email@example.com. Parkinson’s Disease Foundation. Ten frequently asked questions about Parkinson’s disease. www.pdf.org/Publications/factsheets/PDF. Accessed October 8, 2007.
2. McNaught KS, Olanow CW. Protein aggregation in the pathogenesis of familial and sporadic Parkinson’s disease. Neurobiol Aging. 2006;27:530-545.
3. Miyasaki JM, Shannon K,Voon V, et al. Practice parameter: evaluation and treatment of depression, psychosis, and dementia in Parkinson disease (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2006;66:996-1002.
4. Rao SS, Hofmann LA, Shakil A. Parkinson’s disease: diagnosis and treatment. Am Fam Physician. 2006;74:2046-2054.
5. Simuni T. Diagnosis and management of Parkinson’s disease. Medscape Neurology, August 30, 2007. www.medscape.com. Accessed December 14, 2007.
6. 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.
7. Poewe W. The natural history of Parkinson’s disease. J Neurol. 2006;253:VII2-VII6.
8. Leibson CL, Long KH, Maraganore DM, et al. Direct medical costs associated with Parkinson’s disease: a population-based study. Mov Disord. 2006;21:1864-1871.
9. Chaudhuri KR, Healy DG, Schapira AHV; National Institute for Clinical Excellence. Non-motor symptoms of Parkinson’s disease: diagnosis and management. Lancet Neurol. 2006;5:235-245.
10. Huse DM, Schulman K, Orsini L, Castelli-Haley J, Kennedy S, Lenhart G. Burden of illness in Parkinson’s disease. Mov Disord. 2005;20:1449-1454.
11. Pallone JA. Introduction to Parkinson’s disease. Dis Mon. 2007;53:195-199.
12. Muller T,Voss B, Hellwig K, Josef Stein F, Schulte T, Przuntek H.Treatment benefit and daily drug costs associated with treating Parkinson’s disease in a Parkinson’s disease clinic. CNS Drugs. 2004;18:105-111.
13. Frank C, Pari G, Rossiter JP. Approach to diagnosis of Parkinson disease. Can Fam Physician. 2006;52:862-868.
14. Olanow CW, McNaught KS. Ubiquitin-proteasome system and Parkinson’s disease. Mov Disord. 2006;21:1806-1823.
15. Jenner P, Olanow CW. The pathogenesis of cell death in Parkinson’s disease. Neurology. 2006;66:S24-S36.
16. McNaught KS, Jackson T, JnoBaptiste R, Kapustin A, Olanow CW. Proteasomal dysfunction in sporadic Parkinson’s disease. Neurology. 2006;66:S37-S49.
17. Braak H, Ghebremedhin E, Rub U, Bratzke H, Del Treici K. Stages in the development of Parkinson’s diseaserelated pathology. Cell Tissue Res. 2004;318:121-134.
18. Rezak M. Current pharmacotherapeutic treatment options in Parkinson’s disease. Dis Mon. 2007;53:214-222.
19. Barbas NR. Cognitive, affective, and psychiatric features of Parkinson’s disease. Clin Geriatr Med. 2006;22:773-796.
20.Weintraub D, Stern MB. Psychiatric complications in Parkinson disease. Am J Geriatr Psychiatry. 2005;13:844-851.
21.Weintraub D, Moberg PJ, Duda JE, et al. Effect of psychiatric and other nonmotor symptoms on disability in Parkinson’s disease. J Am Geriatr Soc. 2004;52:784-788.
22. Zesiewicz TA, Strom JA, Borenstein AR, et al. Heart failure in Parkinson’s disease: analysis of the United States Medicare current beneficiary survey. Parkinsonism Relat Disord. 2004;10:417-420.
23. Martignoni E, Godi L, Citterio A, et al. Comorbid disorders and hospitalisation in Parkinson’s disease: a prospective study. Neurol Sci. 2004;25:66-71.
24. Constantinescu R, Romer M, Kieburtz K; DATATOP Investigators of the Parkinson Study Group. Malignant melanoma in early Parkinson’s disease: the DATATOP trial. Mov Disord. 2007;22:720-722.
25. Pressley JC, Louis ED,Tang MX, et al. The impact of comorbid disease and injuries on resource use and expenditures in parkinsonism. Neurology. 2003;60:87-93.
26. Leibson CL, Maraganore DM, Bower JH, Ransom JE, O’Brien PC, Rocca WA. Comorbid conditions associated with Parkinson’s disease: a population-based study. Mov Disord. 2006;21:446-455.
27. Olsen JH, Friis S, Frederiksen K, McLaughlin JK, Mellemkjaer L, Moller H. Atypical cancer pattern in patients with Parkinson’s disease. Br J Cancer. 2005;92:201-205.
28. Hely MA, Morris JG,Traficante R, Reid WG, O’Sullivan DJ, Williamson PM. The Sydney multicentre study of Parkinson’s disease: progression and mortality at 10 years. J Neurol Neurosurg Psychiatry. 1999;67:300-307.
29. Ishihara LS, Cheesbrough A, Brayne C, Schrag A. Estimated life expectancy of Parkinson’s patients compared with the UK population. J Neurol Neurosurg Psychiatry. 2007;78:1304-1309.
30. Reese SL. Psychosocial factors in Parkinson’s disease. Dis Mon. 2007;53:291-295.
31. Gage H, Hendricks A, Zhang S, Kazis L. The relative health related quality of life of veterans with Parkinson’s disease. J Neurol Neurosurg Psychiatry. 2003;74:163-169.
32. Pechevis M, Clarke CE, Vieregge P, et al. Effects of dyskinesias in Parkinson’s disease on quality of life and health-related costs: a prospective European study. Eur J Neurol. 2005;12:956-963.
33. Ravina B, Camicioli R, Como PG, et al. The impact of depressive symptoms in early Parkinson disease. Neurology. 2007;69:342-347.
34. Hudson PL,Toye C, Kristjanson LJ. Would people with Parkinson’s disease benefit from palliative care? Palliat Med. 2006;20:87-94.
35. Kim KS, Kim BJ, Kim KH, et al. Subjective and objective caregiver burden in Parkinson’s disease. Taehan Kanho Hakhoe Chi. 2007;37:242-248.
36. Noyes K, Liu H, Li Y, Holloway R, Dick AW. Economic burden associated with Parkinson’s disease on elderly Medicare beneficiaries. Mov Disord. 2006;21:362-372.
37. Ragothaman M, Govindappa ST, Rattihalli R, Subbakrishna DK, Muthane UB. Direct costs of managing Parkinson’s disease in India: concerns in a developing
country. Mov Disord. 2006; 21:1755-1758.
38. Findley L, Aujla M, Bain PG, et al. Direct economic impact of Parkinson’s disease: a research survey in the United Kingdom. Mov Disord. 2003;18:1139-1145.
39. Guttman M, Slaughter PM, Theriault ME, DeBoer DP, Naylor CD. Burden of parkinsonism: a population-based study. Mov Disord. 2003;18:313-319.
40. Lindgren P, von Campenhausen S, Spottke E, Siebert U, Dodal R. Cost of Parkinson’s disease in Europe. Eur J Neurol. 2005;12:68-73.
41. Spottke AE, Reuter M, Machat O, et al. Cost of illness and its predictors for Parkinson’s disease in Germany. Pharmacoeconomics. 2005;23:817-836.
42. Hughes AJ, Daniel SE, Kilford L, Lees AJ. Accuracy of clinical diagnosis of idiopathic Parkinson’s disease: a clinico-pathological study of 100 cases. J Neurol Neurosurg Psychiatry. 1992;55:181-184.
43. Singh N, Pillay V, Choonara YE. Advances in the treatment of Parkinson’s disease. Prog Neurobiol. 2007;81:29-44.
44. Parkinsonian links. Parkinson’s progress: how it is measured. www.fortunecity.com/meltingpot/farley/817/ameasure.html. Accessed October 15, 2007.
45. Unified Parkinson’s Disease Rating Scale. MD Virtual University. www.mdvu.org/pdf/updrs. Accessed October 15, 2007.
46. Goetz CG. New scale for measuring PD increases role of patients and caregivers. Parkinson’s Disease Foundation, Spring 2007. www.pdf.org/publications/newsletters/spring07. Accessed October 15, 2007.
47. Den Oudsten BL,Van Heck GL, De Vries J. The suitability of patient-based measures in the field of Parkinson’s disease: a systematic review. Mov Disord. 2007;22:1390-1401.