Characteristics, care tasks, and unmet needs of informal caregivers of cancer patients.

1. Characteristics, care tasks, and unmet needs of informal caregivers of cancer patients. Early Findings from the Caregivers Supplement to (CanCORs) The Caregiver Supplement Working Group to CanCORS

2. Background Changes in the health care system have shifted much of cancer care from the hospital to the outpatient and home setting. While this shift has translated into increased family involvement in day-to-day care, we have very limited information about caregivers of these cancer patients and the care they provide.

3. Study Goal This study sought to: • Identify the characteristics of informal caregivers of patients in the CanCORS cohort, and • Describe the specific care they provided.

4. Instrument Self administered mailed questionnaire Domains: • Objective caregiver burden including type of care provided, and cancer care training • Subjective caregiver burden • Financial burden of caregiving • Work and caregiving conflict • Social support & quality of relationship with patient • Health and quality of life • Health behavior and self-care • Demographics and health insurance coverage

5. Sample • Family caregivers were identified by the cancer patient during the patient interview. • 2593 consecutive eligible informal caregivers were sent self-administered questionnaires and 1637 (63%) returned them. • 1256 at baseline (~ 4 months post diagnosis) • 828 (66%) of baseline cohort responded • 1337 at follow-up (one year post diagnosis) • 809 (61%) of follow-up cohort responded

6. Sample • 53% (874) were caregivers for patients with colorectal cancer. • 47% (763) were caregivers for patients with lung cancer.

7. Caregiver Sample Characteristics Relationship to cancer patient • 60% (981) were spouses of patient. • 33% (530) were other family members, • 3% adult son • 12% adult daughter • 2% patient’s father • 8% patient’s mother • 8% other family. • 7% (90) were partners, friends or neighbors.

8. Caregiver Sample Characteristics • 25% were men and • 75% were women • Average age for • male caregivers was 61 (sd 13.4, range 20-88) • female caregivers was 58 (sd 12.96, range 20-97) • 73% reported living with patient

9. Caregiver Burden:How many days a week?

10. Caregiver Burden:How many hours a days?

11. Caregiver Burden • 57% felt they had no choice in whether or not to care for patient. • In studies of dementia caregivers lack of choice independently predicts worse caregiver outcomes.

12. Number of Caregiving Tasks Performed by Cancer Type(ADL, IADL, cancer-specific care combined)

13. Cancer-specific “clinical” tasks performed.

14. Do Caregivers Get Training in Clinical Care Task? • 50% of caregivers who performed a clinical care task reported receiving training in that task. • The remaining 50% either reported not needing training or not receiving training. • Thus, at least half of caregivers who performed these tasks did so without needed training.

15. Task-specific training among those who performed task in last 4 weeks

16. Caregiver BurdenRole Strain • 52% reported working for pay • 75% of adult children of patient • 44% of spouses of patient • 22% reported caring for another family member or young children at home • 15% had primary parenting responsibility or also cared for another family member & also work for pay.

17. Caregiver BurdenRole Strain Of those caregivers who worked: • 27% reported no role strain at all • 26% scored in the top 50% on an index tapping the degree of role strain* resulting from conflict between caregiving and work demands. * 3-item index, difficulty balancing work and caregiving, work interferes with caregiving, caregiving interferes with work (alpha=.88, range 1-5).

18. Conclusions • The majority of caregivers are female spouses who provide some care every day. • Most live with the patient but sizable minority do not. • More care is needed by lung cancer than colorectal cancer patients.

19. Conclusions (continued) • Over half of cancer caregivers in this national sample must balance work and caregiving tasks. • 1 in 6: • cared for the cancer patient and • worked for pay and • cared for one or more children or other family members. • 25% reported medium to high levels of role conflict and strain.

20. Conclusions (continued) • Many caregivers performed “clinical” tasks but at least 25% of these did not receive needed training. • Thus, many cancer patients were receiving clinical care from unpaid, untrained caregivers.

21. Future Contribution Do caregiver factors significantly affect patient outcomes? This study may allow for estimation of the impact of caregiver factors on patient outcomes, independent of patient factors, provider factors, and medical care received. In addition, we will examine the relationship between caregiving, patient factors, and caregiver outcomes.