The Association of Energy Depletion Problems With Retention of Daily Life Activities in People With Parkinson’s Disease

PURPOSE: This study proposes a construct called “energy depletion” in people with Parkinson’s disease (PwPD). Energy depletion is defined as tiredness or lack of energy stemming from a combination of fatigue and sleep problems, common nonmotor symptoms in PD. The primary research question evaluates the relationship between energy depletion and retention of activity participation in PwPD. Fatigue and sleep problems are underrecognized and undertreated nonmotor symptoms in PD and have been found to negatively impact quality of life. Growing emphasis is placed on assessment and treatment of nonmotor symptoms, but few studies have explored the impact of fatigue and sleep problems on daily life activities in PwPD. Participation in daily life activities (i.e., social, work, household, and community activities) may offer a protective effect against fatigue and sleep problems or help maintain current energy level in PwPD, although to the authors’ knowledge such studies have not yet been designed.

The current study is an important first step in understanding differences in daily life activities of PwPD with and without fatigue, sleepiness, or nighttime sleep problems. This research is relevant to occupational therapy (OT) because it provides evidence of the interrelatedness of body functions and activity participation in PwPD and helps develop the case for occupation-based interventions.

METHOD: Ninety community-dwelling PwPD (M age = 65, 34 women) self-reported on their experience living with PD as part of an ongoing 3-yr prospective cohort study, Social Self-Management of Parkinson’s Disease (SocM–PD). The participants were recruited from 2013 to 2016 through partnerships with support groups and neurology clinics. Secondary analysis of quantitative data from the SocM–PD database at the baseline time point was applied. Seven self-report items were related to fatigue and sleep problems. Tests of internal consistency and principal component analysis on these items led us to create a composite energy depletion score (7 items) and three separate but related factors: fatigue (3 items), daytime sleepiness (2 items), and nighttime sleep problems (2 items). Activity participation was measured using the Activity Card Sort (Baum & Edwards, 2008), which yields a global score of how many activities a person retained over the past 6 mo, as well as four domain scores for retention of instrumental activities, low-demand leisure, high-demand leisure, and social activities. We calculated Pearson correlations to examine the relationships of energy depletion and its three factors to activity participation.

RESULTS: Energy depletion showed significant negative correlations with global activity retention and with the four activity domains (rs = –.24 to –.36, p < .05). The fatigue factor was also significantly and negatively correlated with all activity retention measures (rs = –.24 to –.37, p < .05). The sleepiness factor was significantly and negatively correlated with global activity retention (r = –.27, p < .05) and with social activity retention (r = –.30, p < .01) but not with the other activity retention scores. The correlations between nighttime sleep problems and activity retention scores were in the expected negative direction but of small magnitude and nonsignificant (rs = –.04 to –.09).

CONCLUSION: PwPD who experienced more energy depletion, especially more fatigue and sleepiness, retained fewer of their daily activities over the past 6 mo. Research is needed to understand the direction of causality in the relationship between energy depletion and activity retention, and whether a third factor is contributing to this association. The current findings provide support for the complex interplay of fatigue, sleep, and daily life activities, of importance to clinical reasoning in OT practice.

References

Baum, C. M., & Edwards, D. (2008). Activity Card Sort (2nd ed.). Bethesda, MD: AOTA Press.