Distance Caregivers Often Experience More Distress and Anxiety Than Patients

Of the 14.5 million patients with cancer in the United States, more than 4 million have “distance caregivers” — those who live far away but are responsible for some level of care.

In addition to routine tasks like providing transportation, making decisions, arranging appointments and managing bills, distance caregivers face additional stressors associated with providing care from afar, including the need to miss work due to caregiving responsibilities and the financial burden of travel.

But what impact do these stressors have on distance caregivers? How do their distress and anxiety levels compare to those of the patients they care for? That’s what researchers from Case Western Reserve University set out to find in a study presented at the Oncology Nursing Society’s 43rd Annual Congress, held May 17 to 20 in Washington, D.C.

“While there is substantial research documenting the psychosocial characteristics in cancer patients and local caregivers to date, none have focused solely on the comparison of patients with their distance caregivers,” the researchers stated in an abstract presented by AnnMarie Papik, B.S., a research assistant at Case Western Reserve.

To conduct their study, the researchers recruited patients taking part in a longitudinal, randomized clinical trial to test the effectiveness of videoconference technology in bringing distance caregivers into the patient’s oncology appointments. They selected patients who were diagnosed with cancer, saw their oncologists at least once a month and had a distance caregiver. For the purposes of this study, a distance caregiver was defined as one who lives more than 100 miles away.

The average age of patients was 65.4 years, and the majority were female (60.7%), Caucasian (68.1%) and had a diagnosis of stage 3 or 4 cancer (74.9%). Distance caregivers had a mean age of 46.2 (12.8) years, and the majority were female (66.3%), Caucasian (69.3%) and the adult child of the patient (64.4%).

After obtaining caregiver and patient consent from 163 pairs of individuals, researchers then used the National Comprehensive Cancer Network (NCCN) Distress Thermometer and PROMIS Short Form v1.0 — Anxiety 4a to measure both distress and anxiety levels in patients and caregivers.

The NCCN Distress Thermometer ranges from 0, meaning no distress is felt, to 10, which indicates extreme distress. In analyzing the results, researchers found the baseline distress levels to be significantly higher in the distance caregivers (4.21) than in patients (2.78). About 25% of patients and 48% of distance caregivers had distress scores above 4, indicating that they should be referred for evaluation.

When it came to anxiety levels measured by the PROMIS questionnaire, where the cutoff score of >60 indicates moderate anxiety, the score in the distance caregiver group was also significantly higher, with a mean of 54.8 compared to the patients’ mean score of 48.3. About 22% of caregivers and 9% of patients had scores above 60.

These findings confirmed the belief that distance caregivers often experience higher rates of distress and anxiety than patients, and led researchers to make some observations and recommendations.

“Historically, distance caregivers have not been recognized as a member of the family unit and, as a result, have not received the information and support needed to reduce their anxiety and distress,” the researchers wrote.

To mitigate this issue, researchers proposed that oncology nurses can partner with distance caregivers by providing them with educational interventions that have the potential to reduce stress and provide better patient outcomes. Ideally, these interventions will help both distance and local caregivers.

Reference:

Papik A, Douglas S, Lipson A, Blackstone E. Distress and anxiety: A comparison of patients with cancer and their distance caregivers. Presented at: Oncology Nursing Society 43rd Annual Congress; May 17-20, 2018; Washington, D.C. https://ons.confex.com/ons/2018/meetingapp.cgi/Paper/1878