Objective: To evaluate the frequency of pain and its severity among XDP (X linked dystonia parkinsonism) patients.

Background: Sex-linked dystonia parkinsonism (XDP, DYT3, "Lubag") is an adult-onset, progressive, debilitating movement disorder. Patients present initially with dystonia with varying degrees of parkinsonism. Although there have been numerous studies describing pain in various forms of dystonias, there is no paper describing the prevalence of pain among XDP patients.

Methods: All patients fulfilling the clinical criteria of XDP seen at a movement disorder clinic in Capiz, Roxas City, Philippines from August 2015 to October 2015 were included. Informed consent was obtained. Baseline demographics were noted and a survey was done assessing whether or not pain was present. Pain severity was assessed using the universally validated Wong-Baker FACES pain rating scale. The predominant disease subtype among patients was determined (either dystonia or parkinsonism), Baseline dystonia and parkinsonism rating scales (BFMDRS, UDRS, UPDRS) were done.

Results: A total of 96 patients were seen. Seventy three (73) out of 96 (76.04%) report having pain. Majority of the patients 92.75% (64 out of the 69) complaining of pain presented with a predominantly dystonic subtype. Whilst 9 out of 27 (33.33%) presented with a Parkinsonian subtype. Among those predominantly presenting with dystonia, 27 out of 64 (42.19%) report having severe pain (5 or 6 on the Wong-Baker FACES pain rating scale), 27 out of 64 (42.19%) report having moderate pain (3 or 4 on the Wong-Baker FACES pain rating scale), 10 out of 64 (15.63%) report having slight pain (1 or 2 on the Wong-Baker FACES pain rating scale). In those that present with dystonia as their predominant symptom, 28 out of 64 (43.75%) report the pain is constant, 12 out of 64 (18.75%) report the pain is continuous but the severity changes, and 24 out of 64 (37.50%) report the pain is intermittent.

Conclusions: There is a high prevalence of pain among patients with X linked dystonia parkinsonism. Patients presenting with a predominantly dystonic subtype particularly those with generalized dystonia, report significant pain. There is a need to be watchful for pain symptoms in XDP and appropriate treatment strategies need to be instituted early.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-high-prevalence-of-pain-among-patients-with-x-linked-dystonia-parkinsonism/