by Danielle Bradshaw from In The Cloud Copy

A study was done to figure out how people with Parkinson’s disease coped with the illness in their day to day lives, identify the coping mechanisms, and determine what they had in common with each other. You can find the original study here.

What is the Point of the Study?

This study was immensely important because the progressive nature of Parkinson’s, coupled with the fact that the disease can have physical (motor and non-motor), mental, and emotional effects on sufferers, means that over time, patients will lose more and more of their independence.

Because patients aren’t able to recover from the long-term illness, it’s important that they find ways to deal with the resulting damage that helps them to maintain a healthy quality of life. The main goal was to observe the commonalities of coping methods so that productive and healthy coping mechanisms can be created and employed.

How Was the Study Conducted?

There are generally two ways by which a person can cope with Parkinson’s. There is the passive way – focusing on the feelings of powerlessness that many patients may experience – or the active way – changing the surrounding environment to suit their needs. The passive method was more often connected to higher rates of depression and physical impairment while active coping was associated with better general health.

The study was conducted in a German-speaking region, so the two main options for evaluating how patients coped were either the Freiburg Coping Questionnaire or the Trier Coping Scales. In the end, however, it was decided to use the Essen Coping Questionnaire (ECQ) instead, as the former two options were too psychometrically limiting and are used and discussed quite frequently (and critically) throughout medical literature. The ECQ, on the other hand, focuses on the traits of the person dealing with a particular disease and had never been previously used in PD research.

To ensure that a complete picture was gathered from each participant, the study also employed the use of:

• Parkinson’s Disease Rating Scale (UPDRS) – I measures daily living with non-motor characteristics, II measures motor examinations, and III was a measurement of motor complications.
• non-motor symptoms questionnaire (NMS-Quest) and Hoehn & Yarh staging – used to measure the patient’s motor and non-motor symptoms.
• Montreal cognitive assessment (MoCA) – was used to measure cognitive functionality among the participants.
• Beck depression inventory (BDI) – used to measure the weight of depressive symptoms among the participants via self-reports. Depression itself was labeled as BDI>15.
• German Short Fort 36 v0.1 (SF-36) – measured the (health-associated) quality of life among participants. Its measurements encompassed social functionality, physical functionality, physical roles, general health, bodily pain, emotional roles, mental health, and vitality.

The Study Design

This was a cross-sectional, cohort study that was conducted in May 2017 through September 2018 at the Jena University Hospital’s Neurology Department. There were 200 participants total – 162 of whom had Parkinson’s (42 of them were seen during patient appointments and 158 of them were surveyed during their stay in the PD Neurology ward). 38 of the 200 had to be removed from the study, however, as they were missing data in regard to either PD (9) or dementia (29).

The Study Results

The study results showed that those who used a more active coping style to deal with their PD saw a shorter duration of the illness (1.7%), fewer motor issues (UPDRS II – 1.0% UPDRS III – 4.0%), a decreased non-motor burden (NMS-Quest – 4.8%), increased cognition (MoCA – 3.6%), and overall, lower depressive symptoms (BDI p<.1%)

Of the 162 participants, 24% had overlapping passive and active coping mechanisms with the most common being acting/problem-centered coping along with distancing themselves and self-promotion. When compared to passively coping patients, the overlap group had a shorter disease duration (2.3%) and less depressive symptoms (.1%). The overlap group did, however, have lower cognition (4.5%) compared to the strictly active coping group. The overlap group also had an SF-36 score that ranked somewhere in between those that cope actively or passively.

Learn more about this story here.