Individuals with late-stage Parkinson's disease (PD) and other related motor disorders experience severe symptoms of physical and psychologic distress, suggesting that current care is falling short, say UK researchers.
These patients experience similar symptoms to their counterparts with cancer, suggesting that "palliative care is not being equitably offered to all those in need," remark Irene Higginson (King's College London, UK) and colleagues in PLoS ONE.
During the 1-year study, half of the study participants showed either an upward or fluctuant trajectory for Palliative care Outcome Scale (POS) scores and symptoms, they report, with high initial POS scores significantly predicting high final scores.
"Some of these symptoms, especially pain and shortness of breath, have effective treatments in cancer patients, which may need to be developed for Parkinson's syndromes," suggest the authors.
The team recruited 82 patients with idiopathic PD (IPD; n=50), progressive supranuclear palsy (PSP; n=15), and multiple system atrophy (MSA; n=17) who all attended an outpatient neurology movement disorder clinic over a 30-month period. Participants completed an initial baseline interview plus follow-up interviews over an approximate 1-year period.
The overall median disease duration was 8 years and quality of life, measured using the EuroQol Group (EQ)-5D and Parkinson's Disease Questionnaire (PQD)-8, was poor, with respective scores of 55.9 and 42.8 out of 100.
During the study, almost half of PSP and MSA patients died (47% of each), and 4% of the whole cohort were too ill to be followed up after their initial interview.
The initial average POS score was low at 14 (out of 40), and physical symptoms were reported among patients regardless of their specific condition, with more than 80% reporting problems using their legs (84.2%), fatigue/lack of energy (84.2%), feeling sleepy (82.9%), and pain (81.7%).
Multivariate analysis revealed that men had a significant 5.18-fold increased chance of reporting worse physical symptoms (measured on the POS for symptoms) during follow up compared with women, while individuals with a high initial POS score had a 1.52-fold increased chance of higher scores at subsequent follow ups.
This latter findings show, disappointingly, remark Higginson et al, that patients with initial severe symptoms continued to experience them.
They conclude that the study highlights "potential service developments and clinical indicators to identify those with greatest future need."
Licensed from medwireNews with permission from Springer Healthcare Ltd. ©Springer Healthcare Ltd. All rights reserved. Neither of these parties endorse or recommend any commercial products, services, or equipment.