Parkinson’s disease patients with subthalamic stimulation and carers judge quality of life differently.
Lewis CJ, Maier F, Eggers C, Pelzer EA, Maarouf M, Moro E, Zurowski M, Kuhn J, Woopen C, Timmermann L. Parkinson’s disease patients with subthalamic stimulation and carers judge quality of life differently. , Parkinsonism Relat Disord. 2014 May;20(5):514-9. doi: 10.1016/j.parkreldis.2014.02.009. Epub 2014 Feb 20.
Introduction: DBS STN has repeatedly shown that it is beneficial in improving the motor symptoms commonly seen in Parkinson’s disease (PD). Research has also shown that quality of life (QoL) is often reported as improved by the people with PD (PWP). However this may not always be the opinion of the family or caregiver of the PWP. The reason for this discrepancy may be multiple and was the purpose of this study.
Methods: The researchers developed a prospective study to look at QoL ratings as measured by PWP as well as their caregivers. They looked at a variety of factors that may explain such differences (e.g. motor, cognitive symptoms, social functioning, etc.). Twenty eight PWP that underwent DBS STN and their caregivers were assessed before surgery, 3 months following, and 1 year post surgery with a battery of tests. PWP and caregivers were excluded if they had dementia or severe psychological disturbances.
Results: The mean age of the PWP was 61, they had PD on average for 12 years, and they showed improvement in motor scores after DBS. The caregivers were slightly younger, mean age 56. Most of the caregivers were spouses but there were a few that were adult children. In looking at the QoL measure, both the PWP and caregivers rated improvement in QoL after surgery, however there was a discrepancy in the measure at the 1 year follow-up between the two groups. Some of the changes within the PWP and possible causal factors included increases in apathy early on after surgery, symptoms of mania, decreased language skills, and decreased simple attention. There was an interesting finding that those PWP with less depression rated their QoL higher than their caregiver counterparts.
Conclusion: At the one year post surgery mark, the caregivers rated that the PWP were more impaired than the PWP thought they were. This may have been due to unrealistic expectations of the caregivers going into the surgery. DBS has repeatedly shown that it can improve motor symptoms but the PD will still progress which is disheartening to many caregivers. There also may have been cognitive and psychological changes from the DBS that were unexpected to the caregivers which also lowered their QoL ratings. Regarding the cognitive changes, the PWP may not have been as aware of the deficits as much as the caregiver so the discrepancy in QoL may have been related to the intactness of the caregiver but decline in abilities to monitor self-awareness in the PWP. Regarding the psychological changes, it is possible that caregivers were less attentive to the decreased depression in the PWP which didn’t translate into the QoL rating. The PWP that also experienced increases in apathy may have an inadequate impression of their QoL compared to the caregivers. Interestingly, they did not find a decline in social functioning in the PWP which has been reported as a possibility for the QoL rating differences in the literature. This study highlights the importance of assessing, treating and educating not just the PWP but also the caregiver about PD and DBS as PD affects the patient as well as the family. Sitting down prior to surgery and discussing all facets and possible changes with the surgery in order to have realistic expectations of outcomes is very important. Appropriate surgical candidate selection is also necessary as it relates to surgery outcomes, expectations, and QoL ratings for both the PWP and caregiver(s). Clinicians as well as researchers should continue to look at the nonmotor as well as motor issues related to DBS in order to provide the utmost best treatment for PWP and their family/caregiver.