Patients with Parkinson's disease (PD) who report feeling lonely also say they have a more severe disease course, according to results from a cross-sectional analysis presented at the MDS Virtual Congress 2020, the annual meeting of the International Parkinson and Movement Disorder Society.
The study aimed to assess the relationship between self-reported quality of life, loneliness, and patient-reported symptoms of PD severity.
The existing literature doesn't offer much information on PD patients and loneliness or social isolation, noted study author Indu Subramanian, MD, a neurologist at the David Geffen School of Medicine at the University of California in Los Angeles and Director of the Southwest Veteran Affairs Parkinson’s Disease Research, Education and Clinical Centers.
Dr. Subramanian said when she and her colleagues reviewed the medical literature, they found some studies on longevity and aging, which touched on depression, but very little related to PD patients and loneliness.
Being socially connected is a basic human need, Dr. Subramanian said, noting that some studies have shown that the lack of social connections can make people hypervigilant, anxious, and have disrupted sleep.
Neurologists need to be proactive in identifying loneliness and social isolation as risk factors in PD patients, said Dr. Subramanian. "Just as we would ask them about falls and hallucinations, we need to ask them [about loneliness] and ask in a way that is out of the box. They are not going to come to us. There's a big stigma with loneliness. Patients are embarrassed and ashamed to be lonely."
To better understand the problem, the researchers asked 1,746 idiopathic PD patients from the CAM Care PD study to participate in two self-reported surveys: the Patient-Reported Outcomes Measurement Information System (PROMIS) to evaluate quality of life and Patient-Reported Outcomes in Parkinson's Disease (PRO-PD) to determine PD severity.
PROMIS looks at social, mental, and physical health in children and adults with various demographic characteristics and chronic conditions. Higher scores on the scale equate to a more severe course of PD, while lower scores were associated with a less severe disease course.
The researchers factored in gender, age, income, and years since diagnosis in their analysis. Lower scores on the PROMIS social health questionnaire were associated with worse scores on PRO-PD.
Participants who indicated they felt lonely had, on average, a score of 354 on the PRO-PD score, which was higher than the average score of 195 found among individuals who reported feeling under a lot of stress or a score of 259 reported by those who were smokers.
Having several friends seemed to be associated with a low PRO-PD score of -177, indicating a less severe course of the disease.
Dr. Subramanian acknowledged that the study did not establish a causal link between loneliness and disease severity. The fact that the surveys were computer-based could have impacted the study's accessibility, she said, which could have been a study limitation.
"By recognizing loneliness as a risk factor for worsened PD severity, health care providers can become more proactive in preventing social isolation," Dr. Subramanian and colleagues wrote in the study abstract. "Counseling about the need to stay socially connected from the time of diagnosis is essential. Group exercises and support groups that allow inter-patient connection would be beneficial. Referral to a religious or spiritual group, internet support group, or even virtual connection may be helpful as patients become more isolated or in remote areas," they wrote.
This is a very important study that focuses on a topic that few medical professionals and researchers have attended to until recently, noted Timothy B. Smith, PhD, professor of counseling psychology at Brigham Young University in Provo, UT, whose research focuses on the impact of social isolation on health.
"The data showed that social isolation and loneliness is associated with worse PRO-PD scores. Similar findings have been found with other populations."
"Clinicians clearly need to take into account the social aspects of disease management. Those are less at the forefront of a physician or neurologist's consideration. But what this study shows is that those factors must be at the forefront," said Dr. Smith.
Clinicians should present patients with screening questions about social support for their patients with Parkinson's disease, Dr. Smith noted. "The findings clearly indicate that social support is a major factor" in quality of life when living with chronic diseases such as PD.
Drs. Subramanian and Smith did not report any disclosures.
Link Up For Related Information
MDS Abstract 1244: Subramanian I, Mischley L, Farahnik J. Loneliness/social isolation as a risk factor for worsened Parkinson disease severity.