1. Characteristics, care tasks, and unmet needs of informal caregivers of cancer patients. The Caregiver Supplement Working Group to CanCORS Early Findings from the Caregivers Supplement 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. 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 Identify the characteristics of informal caregivers of patients in the CanCORS cohort, and Describe the specific care they provided. Describe the specific care they provided.

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

5. Sample Family caregivers were identified by the cancer patient during the patient interview. 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. 2593 consecutive eligible informal caregivers were sent self-administered questionnaires and 1637 (63%) returned them. 1256 at baseline (~ 4 months post diagnosis) 1256 at baseline (~ 4 months post diagnosis) 828 (66%) of baseline cohort responded828 (66%) of baseline cohort responded 1337 at follow-up (one year post diagnosis) 1337 at follow-up (one year post diagnosis) 809 (61%) of follow-up cohort responded809 (61%) of follow-up cohort responded

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

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

8. Caregiver Sample Characteristics 25% were men and 25% were men and 75% were women 75% were women Average age for Average age for male caregivers was 61 male caregivers was 61 (sd 13.4, range 20-88) female caregivers was 58 female caregivers was 58 (sd 12.96, range 20-97) 73% reported living with patient 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. 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. 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) Range Mean (SD) Lung Cancer 0-17 7.5 (5.74) p<.001 Colorectal cancer 0-17 6.4 (5.70)

13. Cancer-specific clinical tasks performed. All Care- givers LungCRC Watched for treatment side-effects58%63%54% Managed side-effects (fatigue, nausea, pain) 41%44%39% Decided whether or not to call doctor 28%32%25% Made a decision about meds27%31%24% Changed bandages15%13%17% Gave O2, nebulizer treatment, chest percussions 8%14%3%

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. Did you receive training in how to … Training Not Needed YesNo … help patient manage fatigue? (642)11%42%47% … help patient manage pain? (639)15%44%40% … administer medications? (481)16%45%39% …change bandages? (230)12%53%35% … help patient manage nausea? (639)42%34%23% Task-specific training among those who performed task in last 4 weeks

16. 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. Caregiver Burden Role Strain

17. 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. 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. 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. In addition, we will examine the relationship between caregiving, patient factors, and caregiver outcomes.