Danny R. Rose, Jr., MD
The myriad of challenges that caregivers of stroke survivors face is an under-recognized consequence of stroke that has significant implications on quality of life for both the caregiver and patient. A 2014 American Heart Association scientific statement reviewed the available scientific literature regarding caregiver interventions and recommended individualized programs that combine skill-building with psycho-educational strategies. The variation in studies cited in that report reflect the current lack of evidence with respect to the most effective and feasible approach to implement such an intervention. Bakas et al. sought to investigate the efficacy of the revised Telephone Assessment and Skill-Building Kit (TASK II, a multifaceted caregiver intervention program) by conducting a randomized controlled clinical trial comparing TASK II to a more traditional program, Support and Referral (ISR) strategy, to determine if a more comprehensive intervention improved caregivers’ mood and quality of life.
A total of 254 stroke caregivers were randomized to either the TASK II group (n=123) or to the ISR comparison group (n=131). Caregivers were deemed appropriate for inclusion if they were the primary caregiver, 21 years of age or older, anticipated providing care for at least one year and were able to participate in the telephone calls and interviews. Caregivers and stroke survivors were excluded if they had severe cognitive issues, severe mental illness or had been hospitalized for alcohol or drug abuse. Demographics between the two groups were similar. Caregivers were primarily women (78.0%, TASK II; 78.6% ISR), about half spouses (48.4%, TASK II; 46.6%, ISR), predominantly White (70.7%, TASK II; 72.1%, ISR), and ranged in age from 22 to 87 years.
Both groups received an information pamphlet from the American Heart Association. Caregivers randomized to the TASK II intervention group also received a resource guide including a checklist addressing caregiver needs regarding finding information, providing physical and instrumental care as well as managing the survivor’s emotions and behaviors. The resource guide also included skill building information for screening for depressive symptoms, maintaining realistic expectations, communicating with healthcare providers as well as stress management for the caregiver and stroke survivor. Both groups received 8 weekly calls from a nurse with a booster call at 12 weeks. Calls to the caregivers in the TASK II group focused on identifying and prioritizing their needs and concerns and using the resources in the resource guide with skill-building strategies. Calls to caregivers in the ISR group focused on providing support through active listening strategies. Baseline data were collected within 8 weeks after the stroke survivor was discharged, and follow-up data were collected at 8 weeks (post-intervention), 12 weeks and at 24 and 52 weeks. Caregiver outcomes were assessed using validated questionnaires on depressive symptoms (Patient Health Questionnaire Depressive Symptom Scale, PHQ-9), changes in social functioning, subjective well-being, and physical health (Bakas Caregiving Outcomes Scale, BCOS), and Unhealthy Days, measured by summing two items asking caregivers to estimate the number of days in the past 30 days that their own physical and/or mental health had been poor.
At baseline, approximately half of the caregivers in each group reported mild to severe depressive symptoms (defined as PHQ-9 ≥ 5). For that subgroup, caregivers in the TASK II group reported a greater reduction in depressive symptoms from baseline to 8 weeks compared to the ISR group (mean difference -2.6, p= 0.013) The effect was also found when comparing baseline to 24 weeks (mean difference -1.9, p=0.041) and baseline to 52 weeks (mean difference -3.0, p=0.041). This subgroup also had a significant improvement in life changes compared to ISR participants from baseline to 12 weeks. This difference was not present for the cohort as a whole for either endpoint. Caregivers in the TASK II group also had a greater reduction in unhealthy days from baseline to 8 weeks compared to the ISR group (mean difference -2.9, p=0.025).
This study represents an important step in the continued effort to design and revise evidence-based programs to provide targeted caretaker support. Based on this study, it appears that caretakers with baseline depressive symptoms are a particularly vulnerable subset that tend to benefit from caregiver interventions in general and do better with interventions targeted at identifying needs and building problem solving skills. It is also worth noting that this represents the first telephone-based intervention showing durable results up to one year for any group of caretakers, and is much more feasible compared to interventions focusing on in-person counseling. Further research on a larger scale resulting from the incorporation of this and similar caregiver well-being intervention strategies into existing stroke systems of care will likely continue to improve our understanding of the most efficient and effective way to provide targeted interventions to improve caretaker well-being