Objective: To explore the methods and tools used by PDNS to assess pain, as well as the main indicators, barriers and difficulties in its evaluation.

Background: Parkinson’s disease (PD) is a neurodegenerative disease which causes motor and non-motor symptoms [1-2]. These include pain which is often underdiagnosed and undertreated due to a lack of consensus in its definition and to the absence of a universal tool for its evaluation [3]. Furthermore, a multidisciplinary approach to the management of PD would be desirable, including the contribution of a Parkinson Disease Nurse Specialist (PDNS) who could perform an appropriate identification and management of pain [4-5].

Method: An ad hoc questionnaire, entitled ‘Pain Assessment in Parkinson’s Disease’, was devised consisting of a demographic section and of an open-ended questions section about personal experience with pain assessment in PD patients. The questionnaire was spread in an international context of PDNS through Google Forms®.

Results: Twelve PDNS participated in the survey: Their mean age was 40.17 (SD ±12.03) and they were currently working in Sweden, Austria, Germany, Canada, Portugal, Italy, England, and Ireland [table1]. Regarding years of experience, the sample presented an average of 6.13 (SD: ±5.73) years as PDNS.

The 91.67% of the sample considers and evaluates pain using eight different scales [table2]. The elements that most make suspect pain were the presence of motor symptoms, behavioural changes and non-verbal signs, especially in more advanced stages [table3 and table4]. The barriers that most emerged were the difficulty linked to the assessment (lack of instruments, difficult symptom detection), communication barriers, and the presence of cognitive disorders or dementia [table5].

Conclusion: Among the specific scales for detecting pain in PD, the King’s Parkinson’s Disease Pain Scale KPPS (KPPS) [6] was the only one used by the PDNS interviewed (16.67%). The sample indicates that beyond the direct question to the patient, validated instruments for PD are needed to measure pain in a more advanced stage or in the presence of cognitive/communication impairments. 

Further research is desirable, both to validate in other languages and to disseminate existing instruments and to develop new ones that consider the barriers and factors that lead to the suspicion of pain in the stages of the disease.

PDNS working countries

Tools for pain measurement in PD

Elements for suspecting pain in patients with PD

Elements for suspecting pain in advanced PD

Main barriers to pain assessment in PD

References: [1] Schulz-Schaeffer, W. J. (2010). The synaptic pathology of alpha-synuclein aggregation in dementia with Lewy bodies, Parkinson’s disease and Parkinson’s disease dementia. Acta Neuropathologica, 120(2). https://doi.org/10.1007/s00401-010-0711-0
[2] Simon, D. K., Tanner, C. M., & Brundin, P. (2020). Parkinson Disease Epidemiology, Pathology, Genetics, and Pathophysiology. Clinics in Geriatric Medicine, 36(1). https://doi.org/10.1016/j.cger.2019.08.002
[3] Antonini, A., Tinazzi, M., Abbruzzese, G., Berardelli, A., Chaudhuri, K. R., Defazio, G., Ferreira, J., Martinez-Martin, P., Trenkwalder, C., & Rascol, O. (2018). Pain in Parkinson’s disease: facts and uncertainties. European Journal of Neurology, 25(7). https://doi.org/10.1111/ene.13624
[4] MacMahon, D. G., & Thomas, S. (1998). Practical approach to quality of life in Parkinson’s disease: the nurse’s role. Journal of Neurology, 245 Suppl 1. https://doi.org/10.1007/pl00007732
[5] Van der Marck, M. A., Kalf, J. G., Sturkenboom, I. H. W. M., Nijkrake, M. J., Munneke, M., & Bloem, B. R. (2009). Multidisciplinary care for patients with Parkinson’s disease. Parkinsonism & Related Disorders, 15 Suppl 3. https://doi.org/10.1016/S1353- 8020(09)70819-3
[6] Chaudhuri, K. R., Rizos, A., Trenkwalder, C., Rascol, O., Pal, S., Martino, D., Carroll, C., Paviour, D., Falup-Pecurariu, C., Kessel, B., Silverdale, M., Todorova, A., Sauerbier, A., Odin, P., Antonini, A., Martinez-Martin, P., & EUROPAR and the IPMDS Non Motor PD Study Group. (2015). King’s Parkinson’s disease pain scale, the first scale for pain in PD: An international validation. Movement Disorders : Official Journal of the Movement Disorder Society, 30(12). https://doi.org/10.1002/mds.26270

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MDS Abstracts - https://www.mdsabstracts.org/abstract/assessment-of-pain-in-people-with-parkinsons-disease-an-exploratory-survey-of-international-nursing-experiences/