Working Group 5: Psychosocial Issues and Medical Effects

Speakers:
Patricia A. Ganz, M.D., Jonsson Comprehensive Cancer Center, University of California, Los Angeles
Alice B. Kornblith, Ph.D., Dana-Farber Cancer Institute

Co-Chairs:
Patricia A. Ganz, M. D, Jonsson Comprehensive Cancer Center, University of California, Los Angeles
Alice B. Kornblith, Ph.D., Dana-Farber Cancer Institute

Introduction

Psychosocial research in cancer treatment and care is burgeoning, primarily in white, upper-middle-class cancer patients, including within the NCI cooperative group studies. However, older cancer patients are underrepresented in most investigations. The discussions of Working Group 5 focused on disparities in research on quality of life and quality of survival.

Research Questions

1. What are the psychosocial needs of older cancer patients and their caregivers? Who are the most vulnerable?
2. What are the short- and long-term medical effects of treatment that affect older patients and survivors? Who are the most vulnerable?
3. How are the needs and concerns of older patients expressed in diverse communities?
4. What new technologies and culturally relevant strategies can be developed for them?

The prevalence of acute and late medical effects of treatment in older patients and older survivors is, as one participant expressed it, "largely a question mark." Few data are available on the short- and long-term medical effects of cancer treatment in older patients.

Lack of information on the psychosocial and physical health status of the caregivers of older patients prompted their inclusion in Working Group 5's research priorities. A comprehensive database is required in these research areas, with a systematic focus on the older patient and the caregiver, particularly because many caregivers are older, and caregivers are providing more health care because of the increasingly shorter hospital stays of cancer patients.

Cancer Center Role

Research on the fear of cancer recurrence or of a second primary cancer; emotional, psychological, and/or social strain; multiple coexisting and emergent medical problems; and the interaction of comorbid conditions with any or all of these circumstances requires the research expertise and multidisciplinary enrichment offered by a cancer center or cancer center consortium.

Research Priorities

Some issues discussed in Working Group 5 were also addressed by the Patterns of Care and Effects of Comorbidity on Cancer working groups. Working Group 5, however, focused on the psychological and social issues and the medical effects of treatment.

1. Develop a core set of instruments to assess the quality of life of older cancer patients. An individualized evaluation that includes functional status, activities of daily living, cognitive and emotional functioning, and socioeconomic status would standardize the assessment of older patients across cancer centers.
   • Instrument development requires 2–3 years, and subsequent testing in selected cancer centers requires an additional 2–3 years.
   • Multidisciplinary collaboration among geriatricians, oncologists, psychologists, and oncology nurses is required for instrument development. This could occur in academic settings that include both cancer centers and geriatric centers.
   • Existing self-report and objective measures as well as measures that were developed primarily in cancer patients or elderly populations need to be reexamined for their applicability to older cancer patients.
   • Instruments need to be developed in diverse populations so that they are representative of a range of minority groups and cultures.
2. Examine the cancer caregiver's functioning and quality of life and impact on the older cancer patient's care and treatment trajectory. Caregiver strain is likely to be associated with the new primary responsibility for providing cancer care in the home setting.
   • Cancer care research has focused primarily on the needs of patients. The caregiver role, usually taken on by a spouse, adult child, or sibling, is rarely studied, even though caregivers are responsible for direct and indirect delivery of high-quality cancer care.¹
   • Family members and friends must take on a new role in providing cancer care that includes a wide range of important responsibilities, such as monitoring symptoms, providing emotional support, administering medications, relieving pain, arranging health care services, and discussing advance directives. The level and length of care required by the patient, as well as the caregiver's health, can compound caregiver strain.
   • Longitudinal studies are needed on the impact of caring for the older cancer patient on the caregiver's quality of life and its reciprocal influence on the patient.
   • Studies should be conducted on the adequacy and quality of caregiving and its impact on the patient's access to and receipt of high-quality cancer care.
3. Develop interventions to prevent or reduce the medical and psychological effects of cancer treatment in older adults.
   • The prevalence of long-term medical and psychosocial effects should be determined.
   • How medical effects of treatment may contribute to additional comorbidity (e.g., second primary tumors, exacerbation of preexisting and/or concomitant age-related comorbid conditions) beyond the normal physical changes associated with aging needs to be examined.
   • Cancer survivor clinics should be established for the follow-up of, and research on, psychosocial issues, late medical effects, early detection of recurrence, and new malignancies.
   • For long-term survivors, normal and cancer- or treatment-induced physical changes should be identified. For example, age-associated factors may induce acute and late treatment effects in normal tissue tolerance and vital organs after radiation treatment of older cancer patients. ²
   • Clinical studies are needed to develop optimum treatment parameters that will help improve tumor response in older patients with concurrent diseases and conditions. These might include poor physical performance status and morbidity or the special problems sometimes associated with the aging process, including poor repair mechanisms, functional loss, and functional reserve limitations in renal, pulmonary, and cardiovascular organ systems that may contribute to greater susceptibility to treatment toxicity.

These initial descriptive studies will make it possible to develop and test interventions that will improve the medical and psychosocial status of older cancer patients.

Research Barriers

• Measures of quality of life and quality of survivorship that were not developed in older cancer patients may not be sensitive to the psychological and social issues of this population.
• In conjunction with a comprehensive measure of older patients' functional and psychosocial status, medical databases must be developed that systematically collect information about selected laboratory tests and patient functioning, as rated by oncologists. This information could be used to complement that obtained by self-report from the patient.
• Without state-of-the-art computer technology, establishing combined databases of older cancer patients' medical and psychosocial data will be more difficult. The newer technologies (e.g., touch screens, handheld tablets or Palm pilots, video telephones) might facilitate the collection of quality-of-life data from older cancer patients.
• The situation of the older cancer patient is very complex and may include health conditions other than cancer, multiple drug regimens, inadequate income, disabilities, lack of support services, and absent or insufficient caregiving. Any of these may impose research barriers.
• More research staff are likely to be needed for studies on older than on younger patients, so protocol-specific research support for dedicated personnel is suggested.
• Resources to foster collaboration among geriatricians, gerontologists, and cancer center researchers are urgently needed through fellowships for geriatric oncologists and multi-institutional support for research collaborations focusing on older cancer patients.

¹ When caregivers provider indirect care, they assume the usual family responsibilities of the sick person before illness. Direct care involves administering medications, checking proper dosage, providing pain relief, monitoring treatment interventions, etc.

² Acute effects are problems developed during the standard 6- to 7-week treatment period or shortly thereafter in, for example, the skin or mucosa. Late effects develop months or even years after treatment and may include anemia, alteration of connective tissue, chronic endocarditis, progressive fibrosis of the lung, colonic perforation or obstruction, bladder contraction, vasculature injuries, or a second primary tumor.