1.2 million cancer patients will be newly diagnosed in 1999 and 563,100 will die.

Early detection and aggressive multimodal cancer therapy has resulted in longer life and more care transitions for individuals diagnosed with cancer.

Responsibility for patient care has transferred from hospitals to home and family members.

Family caregivers provide much of the cancer care and the demands of care may be profound.

Family members report receiving little information or direction on how to monitor patient status or how to care for equipment, manage symptoms or when to contact health providers.

Family caregivers want information and feel ignored and use trial and error means to find the appropriate level of care.

Eighty-two percent of our patients need family assistance for activities such as symptom management, disability, mobility, dressings, and catheters.

Family members also deal with extensive coordination of care.

Family caregivers provide at least eight hours of care each week during the first year after diagnosis. During active treatment, 40% report more than 10 hours per week in care. This care assumes the role equivalent to a part-time job.

For the year 1999, that would add up to 345 million uncompensated hours of care for those newly diagnosed with breast, colon, prostate, and lung cancer (165,865 person yrs.).

Family caregivers who are employed (20-25% adult daughters primarily) report missing work, taking personal days and vacation days to care, and a small percentage quit or retire early to provide care.

There is also a health cost to the family caregiver as they experience fatigue, depression, burden, and caring impacts on their physical health.

We have not fully explored the cost in personal, physical, and mental health of the caregiver. We know they give up leisure, physical exercise, and proper nutrition but are unsure of the use of medications such as tranquilizers or other medications and primary care visits.

In pilot work, advanced practice nurses have made a difference in caregiver distress and preparation to care.

If even 15% of the patients have an avoidable hospital readmission due to lack of caregiver knowledge or skill, this could have a major impact on costs to Medicare. If 15% of the newly diagnosed patients with colon, prostate, lung or breast cancer have a single day stay at $3,000 per day, $309,960,000 could be the cost to Medicare.

The quality of family care on patient outcomes is unknown.

This is important to the health and well-being of the United States, both the patients with cancer and their family caregivers. Family care is a hidden health care resource.

Research is needed in order to identify and tailor the "appropriate interventions" to prepare family caregivers to lower their uncertainty regarding care and to ensure the best patient outcomes.

Families need educational and informational support to care. Advanced practice nurses may be the appropriate health care providers for this care.

Recommendations for Future Research and Policy Activities

Future research needs to identify and link cancer and its treatments with the priority problems faced by patients and their family caregivers.

Priority problems are those that if not addressed jointly by cancer centers, oncologists, patients and their families, will result in complications or delays in treatment, slower recovery, or re-admission to a hospital. Each of these factors increase the cost of treatment to purchasers, the public, and to patients and their family caregivers.

• The characteristics of patients with cancer and families who are more able to implement home care strategies and those who need extra assistance.
• Determining what interventions are more effective for patients and families in caring for problems in the home.
• The cost savings to families and to the health care system when patients and their families are educated and able to implement appropriate home care.
• Cost effectiveness of use of advanced practice nurses to assist patients and family caregivers.

Public programs for the financing of health care need to be developed through agencies such as HCFA to offer reimbursement incentives to Cancer Centers who demonstrate effective programs for training and monitoring patient and family cancer care at home.

Policy makers should encourage and provide incentives for health purchasers, consumer groups and provider organizations to develop programs for training cancer patients and families to provide effective care at home.

Tax incentives for those who provide care should be considered as a public policy.

Family Home Care for Cancer: A Community-Based Model
NR01915 CA79280
In collaboration with the Walther Cancer Institute and MSU Cancer Center Barbara A. Given, PhD, RN, FAAN, Principal Investigator
Charles W. Given, PhD, Co-Principal Investigator
E-mail: Barb.Given@ht.msu.edu