Transitions to family caregiving: enrolling incident caregivers and matched non-caregiving controls from a population-based study.

BACKGROUND AND AIM: Providing care to an older adult with a disability has been associated with increased risk to the caregiver's health, but most previous studies of caregiving and health compare persons who are already caregivers with poorly matched non-caregiving controls and are often based on convenience samples. In this report, we describe the enrollment of persons who transitioned into a family caregiving role while participating in a national epidemiological study. METHODS: Participants in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study were asked on two occasions 9-14 years apart if they were providing care on an ongoing basis to a family member with a chronic illness or disability. Those who answered "no" and "yes", respectively, to this caregiving question and reported sufficient caregiving responsibilities after their transitions were enrolled in the present study as incident caregivers (N = 251). Participants matched on multiple demographic and health history variables and who reported no history of caregiving were enrolled as non-caregiving controls (N = 251). RESULTS: Among eligible participants, 84% agreed to participate, and 47% of caregivers reported caring for a person with dementia. Descriptive analyses confirmed the success of the matching procedures for balancing the groups on multiple demographic and pre-caregiving health variables. Depressive symptoms and perceived stress increased significantly after the transition to caregiving. CONCLUSION: Comparable, population-based samples of incident caregivers and matched non-caregivers have been enrolled. Future analyses will examine within-person changes in health and circulating biomarkers as a function of the transition to caregiving.

Is self or caregiver report comparable to Medicare claims indicators of healthcare utilization after stroke?

Background Claims data from Medicare or other payers might not generalize to other populations regarding service use after stroke especially among younger patients. However, high agreement between self-report and Medicare claims data would support the use of self-reported healthcare utilization data in these populations. Methods A population-based sample of 147 stroke participants with traditional fee-for service Medicare and their family caregivers was examined. Concordance with Medicare claims was examined for stroke participant self-report for Emergency Room visits, hospitalizations, and physician visits for a six-month period after stroke, and for both stroke participant and caregiver reports of receipt of Physical Therapy (PT), Speech and Language Pathology (SLP), or Home Health Agency (HHA) visits. Results Agreement was good for Emergency Room visits (kappa 0.75), hospitalization (kappa 0.70), and physician visits (Prevalence Adjusted Bias Adjusted Kappa [PABAK] 0.69) but more moderate for physical therapy, speech and language therapy, and home health agency visits (kappa 0.56-0.63). Caregiver agreement with Medicare claims was similar to stroke participant agreement. African Americans were less likely to self-report therapy compared to whites (OR 0.32 PT, 0.38 SLP, 0.29 HHA, p < 0.03). Younger stroke participants reported lower levels of Emergency Room visits than claims (OR 0.81, p = 0.001). Conclusion Healthcare utilization after stroke can be reliably assessed from Medicare claims, Stroke participant, or Caregiver report for salient events such as hospitalizations and Emergency Room visits. Self-report and caregiver report appear to be less reliable for identifying use of therapy or home health services. Caution should be used when interpreting disparities based on self-report data alone in these areas.