Study Examines How Caregiver Strain Affects Patients

Improving quality of life 'may hinge on addressing caregiver strain'

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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People with Parkinson’s disease are more likely to report a good quality of life if their caregivers are not strained, a new study suggests.

“As caregiver strain was found to be related to patients’ QoL [quality of life], improvement in QoL for PD [Parkinson’s disease] patients may hinge on addressing caregiver strain,” the researchers wrote.

The study, “Association of caregiver strain with the trajectory of quality of life in Parkinson’s disease,” was published in Parkinsonism & Related Disorders.

Parkinson’s can take a toll on a person’s quality of life, and studies have shown that patients tend to report worsening QoL over time as the disease progresses.

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Many factors can influence quality of life, and a lot of Parkinson’s-focused research has looked for ways to improve it, from treatments to better control symptoms to interventions such as exercise or boxing.

Many people with Parkinson’s, particularly those in more advanced stages of the disease, rely on caregivers to help them in their day-to-day lives. Often, the caregiver is a spouse, child or other family member.

While caregivers are an important source of physical and emotional care for people with Parkinson’s, having a caregiver who is stressed and burdened beyond their means may end up being detrimental for the patient.

Now, a team of researchers in the U.S. evaluated how caregiver stress affects QoL for people with Parkinson’s.

“The current study aimed to examine factors that predict trajectories of QoL in PD, with a focus on caregiver strain as a significant driver of QoL decline,” the scientists wrote, adding that this study “is the first to examine the relationship between caregiver strain and QoL trajectories in people with PD.”

Parkinson’s Outcomes Project

The researchers used data from the Parkinson’s Outcomes Project, a study sponsored by the Parkinson’s Foundation that is following more than 10,000 Parkinson’s patients over time at centers in the U.S., Canada, the Netherlands, and Israel.

The analysis included data from 1,349 Parkinson’s patients with a caregiver and who completed four study visits: an initial (baseline) visit, and then three visits done at yearly intervals thereafter.

At baseline, these patients (34.3% women), had a mean age of 68.3 years and had been living with Parkinson’s for eight to 11 years.

The researchers looked at factors that potentially could predict patients’ quality of life, as measured by the Parkinson’s Disease Questionnaire-39.

Among them were measures of disease severity, mobility, and cognitive function, as well as the Modified Caregiver Strain Index (MCSI), which quantifies caregiver burden. MSCI assesses strain in five domains: physical, psychological, social, financial, and personal.

Three groups of patients

As expected with a disease like Parkinson’s, which often manifests very differently from person to person, there was a lot of variation in QoL trends over time. Using statistical models, the researchers divided the patients into three groups or classes.

Just more than half (57.4%) of the patients were in the “favorable” class, characterized by relatively high QoL at baseline with only slight worsening of QoL over time. About a third (32.6%) were in the “moderate” class, showing moderate QoL values at baseline that tended to worsen slightly over time. The remaining 10% of patients, the “problematic” class, had low QoL at baseline with minimal improvement over time.

Results showed that patients whose caregivers reported less strain were significantly more likely to be in the “favorable” class.

“For each additional point on the MSCI (i.e., increased caregiver burden), the odds of being in the favorable class compared to the moderate class decreased by 12%,” the researchers wrote.

Given the importance of caregiver strain in determining patient QoL, the researchers called on clinicians to actively engage with caregivers about potential strain so that support can be offered where it’s needed.

“We recommend that a caregiver strain measure be administered to caregivers when possible, during clinic visits to identify caregivers who may require referrals to health services,” the team wrote.

Other predictors

Other predictors of being in the “favorable” class relative to the “moderate class” included better verbal fluency scores and better mobility, as assessed with a validated timed test where an individual is asked to stand, walk a short distance, and return to the seat.

Conversely, younger age was associated with a greater likelihood of being in the “problematic” class relative to the “moderate” class.

“The current study supplies additional evidence of the impact of verbal fluency and mobility on QoL trajectories in people with PD, suggesting that mobility and verbal fluency should be prioritized in this population through referrals to physical therapy and speech therapy,” the researchers wrote.

They noted, however, that while the MSCI is a useful tool for measuring caregiver strain, it is only one measure of a very complex and subjective experience.

Future research considering other measures of caregiver strain are needed, as well as those testing interventions that could help support caregivers and ultimately improve life quality for patients.