Experiences of health services and unmet care needs of people with late-stage Parkinson’s in England: A qualitative study

Autoři: Joy Read aff001;  Sarah Cable aff001;  Charlotte Löfqvist aff002;  Susanne Iwarsson aff002;  Gergely Bartl aff001;  Anette Schrag aff001
Působiště autorů: Department of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, University College London, United Kingdom aff001;  Department of Health Sciences, Lund University, Lund, Sweden aff002
Vyšlo v časopise: PLoS ONE 14(12)
Kategorie: Research Article
doi: 10.1371/journal.pone.0226916



To explore experiences of health services and unmet care needs by people with late-stage Parkinson’s in England.


Ten participants, at Hoehn and Yahr stage 4 or 5, were interviewed using semi-structured open-ended questions. Data were analysed using qualitative thematic analysis.


Participants reported that whilst under the treatment of specialist hospitals, the majority of care provision had shifted into the community, often because hospital-based services were felt to be difficult to access and have limited benefit to them. When using health-care services, participants frequently experienced having to ‘fit-in’ to service structures that did not always accommodate their complex needs. Despite high levels of disability, participants expressed their desire to maintain their identity, normality of interests and activities in their lives, including remaining in their own homes. This was facilitated by bespoke care and equipment, and positive relationships with care providers. Knowledge on disease management was a key factor in their perceived ability to remain in control. Family caregivers had a central role in facilitating care at home. There was uncertainty about and little planning for the future, and moving to a residential nursing home was perceived an undesirable but potentially necessary option for future care.


Unmet care needs identified by people with late stage Parkinson’s in England include greater flexibility of healthcare structures and bespoke service provision, to accommodate their individual complex needs. Support in their own homes and positive relationships with healthcare providers help People with Parkinson’s (PwP) to maintain a degree of normality and identity, and provision of information help them maintain some control. There is a need for more informed discussions on future care planning for this specific population.

Klíčová slova:

Allied health care professionals – Dementia – England – Hospitals – Nursing homes – Palliative care – Parkinson disease – Qualitative studies


1. Schrag A, Ben-Shlomo Y, Quinn NP. Cross sectional prevalence survey of idiopathic Parkinson’s disease and Parkinsonism in London. BMJ. 2000 Jul. 1; 321(7252):21–2. doi: 10.1136/bmj.321.7252.21 10875828

2. Dorsey ER, Constantinescu R, Thompson JP, Biglan KM, Holloway RG, Kieburtz K, et al. Projected number of people with Parkinson disease in the most populous nations, 2005 through 2030. Neurology. 2007. Jan. 30;68(5):384–6. doi: 10.1212/01.wnl.0000247740.47667.03 17082464

3. Archibald N. Neurorehabilitation in Parkinson disease. In: Barnes MP & Good DC, editors. Handbook of Clinical Neurology Vol.110 (3rd series) (2013). Chapter 37. Pp 435–442.

4. World Health Organization (WHO). Neurological Disorders: Public Health Challenges. Geneva. World Health Organization; 2006. p.142.

5. Hechtner MC, Vog T, Zollner Y, Schroder S, Sauer JB, Binder H, et al. Quality of life in Parkinson’s disease patients with motor fluctuations and dyskinesias in five European countries. Parkinsonism and Related Disorders 2014 Sep.;20 (9):969–74. doi: 10.1016/j.parkreldis.2014.06.001 24953743

6. Haahr A, Kirkevold M, Hall E, Østergaard K. Living with advanced Parkinson’s disease: a constant struggle with unpredictability. Journal of Advanced Nursing. 2011 Feb.; 67(2):408–17. doi: 10.1111/j.1365-2648.2010.05459.x 20946567

7. Martinez-Martin P, Rodriguez-Blazquez C, Kurtis MM, Chaudhuri KR, and NMSS Validation Group. The Impact of Non-Motor Symptoms on Health-Related Quality of Life of Patients with Parkinson’s Disease. Movement Disorders, 2011 Feb. 15;26 (3):399–406. doi: 10.1002/mds.23462 21264941

8. Gallagher D A, Lees A J, Schrag A. What Are the Most Important Nonmotor Symptoms in Patients with Parkinson’s Disease and Are We Missing Them? Movement Disorders. 2010 Nov. 15;25 (15):2493–500. doi: 10.1002/mds.23394 20922807

9. National Institute for Health and Care Excellence (2017). Parkinson’s disease in adults. (Nice guideline NG71). https://www.nice.org.uk/guidance/ng71.

10. Ferreira JJ, Katzenschlager R, Bloem BR, Bonuccelli U, Burn D, Deuschl G, et al. Summary of the recommendations of the EFNS/MDS-ES review on therapeutic management of Parkinson’s disease. European Journal of Neurology. 2013 Jan. 20(1):5–15. doi: 10.1111/j.1468-1331.2012.03866.x 23279439

11. van Vliet L M, Gao W, Di Francesco D, Crosby V, Wilcock A, Byrne A, et al. How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurology. 2016 May. 10;16:63. doi: 10.1186/s12883-016-0583-6 27165157

12. Chaudhuri K R, Bhidayasiri R, van Laar T. Unmet needs in Parkinson’s disease: New horizons in a changing landscape. Parkinsonism and Related Disorders. 2016 Dec.; 33 Suppl 1:S2–S8.

13. Hasson F, Kernohan WG, Waldron M, McLaughlin M, Waldron M, McLaughlin D, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliative medicine. 2010 Oct. 24 (7) 731–6. doi: 10.1177/0269216310371414 20525749

14. Balzer-Geldsetzer M, Ferreira J, Odin P, Bloem BB, Meissner WG, Lorenzl S, et al. Study Protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study. BMC Neurology, 2018 Nov. 18:185. doi: 10.1186/s12883-018-1184-3 30396331

15. 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 Mar.; 55(3):181–4. doi: 10.1136/jnnp.55.3.181 1564476

16. Hoehn M, & Yahr M. Parkinsonism: onset, progression and mortality. Neurology. 1967 May. 17 (5): 427–42. doi: 10.1212/wnl.17.5.427 6067254

17. Fahn S, Elton R L, UPDRS program members. Unified Parkinson’s Disease Rating Scale. In: Fahn S, Marsden CD, Goldstein M, Calne DB, editors. Recent developments in Parkinson’s disease, Vol 2. Florham Park, NJ: Macmillan Healthcare Information; 1987. p 153–163.

18. Schwab RS, England AC Jr. Projection technique for evaluating surgery in Parkinson’s disease. In: Gilingham FJ, Donaldson IML, eds. Third symposium on Parkinson’s disease. Edinburgh: E & S Livingstone. 1969. 152–7.

19. Etikan I, Abubakar S, Rukayya M, Alkassim S. Comparison of Convenience Sampling and Purposive Sampling. American Journal of Theoretical and Applied Statistics. 2016 Jan. 5(1): 1–4.

20. Folstein MF, Folstein SE, McHugh PR. “Mini-Mental State” A practical method for grading the cognitive state of patients for the clinician. J. Psychiat. Res. 1975 Nov.;12(3):189–98. doi: 10.1016/0022-3956(75)90026-6 1202204

21. Barton B, Grabli D, Bernard B, Czernecki V, Goldman J, Stebbins G, et al. Clinical Validation of Movement Disorder Society–Recommended Diagnostic Criteria for Parkinson’s Disease with Dementia. Movement Disorders, 2012. Vol. 27, No. 2,

22. Rubin HJ & Rubin IS. Designing main questions and probes. In Qualitative interviewing (2nd edition): The art of hearing data. Sage Publications. 2005.

23. Braun V & Clarke V. Using thematic analysis in psychology. Qualitative research in psychology. 2006 July. 3(2) 77–101.

24. Mateus C, & Coloma J. Health Economics and Cost of Illness in Parkinson’s Disease. European Neurological Review. 2013;8(1):6–9

25. Findley LJ, Wood E, Lowin J, Roeder C, Bergman A, Schifflers M. The economic burden of advanced Parkinson’s disease: an analysis of a UK patient dataset. Journal of Medical Economics. 2011;14(1):130–9. doi: 10.3111/13696998.2010.551164 21235405

26. Soundy A, Stubbs B, Roskell C. The experience of Parkinson’s disease: A systematic review and meta-ethnography. The Scientific Word Journal. 2014 Nov. doi: 10.1155/2014/613592 25525623

27. Davies N, Riat G, Maio L, & Iliffe S. Family Caregiver’s conceptualisation of quality end-of-life care for people with dementia: A qualitative study. Palliative Medicine. 2017 Sept. 31(8) 726–733. doi: 10.1177/0269216316673552 27815555

28. Arntzen C, Borg T, Hamran T. Long-term recovery trajectory after stroke: an ongoing negotiation between body, participation and self. Disabil Rehabil. 2014 Sept.: 37(18):1626–34. doi: 10.3109/09638288.2014.972590 25318537

29. Bakker M, Creemers H, Schipper K, Beelen A, Grupstra H, Nollet F, et al. Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers and professionals. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2015 Jun.;16 (3–4):180–6. doi: 10.3109/21678421.2014.971811 25611162

30. Dorsey ER, Voss TS, Schprecher DR, Deuel LM., Beck CA, Gardiner IF, et al. A U.S. Survey of Patients with Parkinson’s Disease: Satisfaction with Medical Care and Support Groups. Movement Disorders. 2010 Oct. 25 (13): 2128–2135. doi: 10.1002/mds.23160 20824736

31. Giles S, & Miyasaki J. Palliative stage Parkinson’s disease: patient and family experiences of health-care services. Palliative Medicine. Palliative Medicine 2009; 23: 120–125. doi: 10.1177/0269216308100773 19098110

32. Dröes RM, Meiland FJ, Evans S, Brooker D, Farina E, Szcześniak D, et al. Comparison of the adaptive implementation and evaluation of the Meeting Centers Support Program for people with dementia and their family carers in Europe; study protocol of the MEETINGDEM project. BMC Geriatr. 2017 April. 4;17(1):79. doi: 10.1186/s12877-017-0472-x 28376895

33. van der Eijk M, Faber MJ, Al Shamma S, Bloem BR. Moving towards patient-centered healthcare for patients with Parkinson’s disease. Parkinsonism and Related Disorders. 2011 June. 17 (5):360–364. doi: 10.1016/j.parkreldis.2011.02.012 21396874

34. Merritt RK, Hotham S, Graham L, Schrag A. The subjective experience of Parkinson’s disease: A qualitative study in 60 people with mild to moderate Parkinson’s in 11 European countries. European Journal for Person Centered Healthcare. 2018. Vol 6. Issue 3. pp 447–453 447.

35. Schrag A, Khan K, Hotham S, Merritt R, Rascol O, Graham L. Experience of care for Parkinson’s disease in European countries:a survey by the European Parkinson’s Disease Association. European Journal Neurology. 2018, Dec. 25 (12). 1410–1417.

36. https://www.parkinsons.org.uk/professionals/resources/medicines-optimisation-consensus-statement

37. www.parkinsons.org.uk/research/improving-life-through-research

38. Chen YY, Guan BS, Li ZK, Wu QY. Application of telehealth intervention in Parkinson’s disease: A systematic review and meta-analysis. Journal of Telemedicine and Telecare. 2018 August. doi: 10.1177/1357633X18792805 30153767

39. Provinciali L, Carlini G, Tarquini D, Defanti C, Veronese S, Pucci E. Need for palliative care for neurological diseases. Neurological Sciences. 2016, Oct. 37 (10), pp. 1581–1587 doi: 10.1007/s10072-016-2614-x 27299428

40. Higginson IJ, & Evans C J. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? The Cancer Journal. 2010 Sept. 16 (5): 423–435. doi: 10.1097/PPO.0b013e3181f684e5 20890138

41. van der Steen JT, Radbruch L, Hertogh C, de Boer M E, Hughes JC, Larkin P. et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine 2014 March. 28(3) 197–209. doi: 10.1177/0269216313493685 23828874

42. Lum HD, Jordan SR, Brungardt A, Ayele R, Katz M, Miyasaki JM, et al. Framing advance care planning in Parkinson disease. Patient and care partner perspectives. Neurology. 2019 May. 92(22):1–9.

43. Fox S, Cashell A, Kernohan WG, Lynch M, McGlade C, O’Brien T, et al. Palliative care for Parkinson’s disease: Patient and carer’s perspectives explored through qualitative interview. Palliative Medicine 2017, Vol. 31(7) 634–641 doi: 10.1177/0269216316669922 27683476

44. Boersma I, Miyasaki Ji, Kutner JS, Kluger B. Palliative care and neurology: Time for a paradigm shift. Neurology, 2014. 83 (6) pp. 561–567 doi: 10.1212/WNL.0000000000000674 24991027

45. Sleeman KE, Ho YK, Verne J, Glickman M, Silber E, Gao W, et al. Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study Palliative Medicine 2013, 27(9):840–846 doi: 10.1177/0269216313490436 23737036

Článek vyšel v časopise


2019 Číslo 12