CU Cancer Center recruiting caregivers of allogeneic transplant patients
Administering medication, managing side effects, driving to appointments and processing complex information are only a snapshot of caregivers’ duties. Coupled with holding down full time jobs and maintaining a household, it’s no surprise caregivers are stressed. What’s surprising though is how little research has been conducted on mitigating caregiver distress and its impact on patient quality of life.
Mark Laudenslager, PhD, a University of Colorado Cancer Center investigator and University of Colorado School of Medicine professor of psychiatry is hoping to change that. In 2013, Laudenslager received a $2 million research award from the Patient-Centered Outcomes Research Institute to study interventions to reduce caregiver distress and improve quality of life in allogeneic hematopoietic stem cell transplant patients.
“The distress of caring for patients with cancer has only recently begun to be researched,” says Laudenslager, “yet we know that it is becoming increasingly necessary to include them in patient-centered care. Patients and caregivers need to be a team in cancer survivorship.”
Since caregivers of allogeneic patients provide 24/7 care to their loved ones for 100 days post-transplant, the group has been shown to be a highly distressed group. Increased emotional stress, depression, anxiety and risk of illness often impair their ability to be a caregiver. Laudenslager is hoping his interventions will help alleviate these feelings.
“If caregivers are not able to care for themselves or they are sick, they will not be able to adequately care for their loved one,” Laudenslager says.
The new randomized study is recruiting 225 caregivers of allogeneic patients from CU Cancer Center and Presbyterian/St Luke’s Medical Center to be followed for six months post transplantation. Caregivers will be randomly assigned to receive a stress management intervention or treatment as usual.
Educational modules in the intervention will teach caregivers about stress and its effects, tools to help them cope, strategies for staying healthy, and how to manage changing relationships, among others. Utilizing smartphone technology, participants will access mobile apps for medication reminders and daily affirmations to alleviate some of their daily demands. Additionally, the study provides scheduling flexibility, allowing caregivers to video chat with the interventionist when they are not able to meet in person.
“Using the smartphone and apps is our way of simplifying the caregiving for our caregivers while bringing our tools into the 21st century,” Laudenslager says. “The telemedicine model opens up continued communications with our caregivers and patients once they go home and often drop off the map due to their daily demands and desire to move on after initial treatment.”
The study also incorporates two biomarkers of caregiver stress: cortisol in hair and telomere length. Study participants will provide a hair sample on several occasions to look for increased levels of cortisol—the primary stress hormone. A small sample of blood will also be collected during and following the transplant procedure in order to look for shortening of telomere length—a possible predictor of lifespan which affected by distress. Both of these samples will help Laudenslager understand whether the interventions helped reduce caregiver stress.
Caregiver and patient questionnaires will also be disseminated throughout the six-month study in order to gain a composite measurement of caregiver distress and see whether that distress also impacts patient quality of life. Previously, Laudenslager’s caregiver study did not measure improvements to patient quality of life, a shortcoming, he says.
“We do know that caregivers will do better after our intervention, but we’re not sure how well the patients will do,” he explains. “We hope that if caregivers have less distress, patients will also have less stress and a better quality of life.”
If the research study is successful, Laudenslager hopes to create a caregiver program that can be assessable to all caregivers, whether they live in rural areas or outside Colorado. So far his interventions have been proven to help the caregiver. Only time will tell if they help the patient too.
“It’s nice knowing we’re making a positive impact on the lives of patients and caregivers,” he says. “This truly is the comprehensive approach to treatment.”
To get more information about the study, please contact Ben Brewer, PsyD, University of Colorado Cancer Center, 720-848-1611, or Teri Simoneau, PhD, Presbyterian/St Luke’s Medical Center, 720-754-4850.