The longitudinal relationship between quality of life and survival in advanced stage cancer.

OBJECTIVES: Quality of Life (QoL) at baseline is frequently found to be a prognostic factor in cancer studies. However, little is known about the relationship of the trajectory of QoL and survival in patients with advanced cancer. This study evaluates the effects of both level and change of QoL on survival to explore the potential of utilizing longitudinal information of QoL for prognosis. METHODS: A series of joint models were used in a sample (N = 512) of patients diagnosed with advanced cancer (sample consisted of nine different cancer sites) with assessments of QoL across six time points and with survival information recorded up to 28 months after diagnosis. We used FACT-G as the QoL measure, and we evaluated the effects of change in QoL controlling for the time-dependent effects of chemotherapy and radiation. RESULTS: The median survival for patients was 14.2 months, and 10% of the sample had survived beyond 28 months after the diagnosis of advanced cancer. The effect of change of QoL on survival was significant (hazard ratio = 0.98; p < 0.001) controlling for time-dependent treatment effects. Also, the slope of the trajectory in QoL was found to be a significant predictor of survival (hazard ratio = 0.18; p < 0.001). CONCLUSION: These preliminary findings suggest that the patient's longitudinal experience in QoL may be a significant prognostic factor of survival, a novel finding with potentially important implications in medical decision making. Longitudinal information on QoL can be used for updating the patient's prognosis of survival.

An Exploration of the relative influence of patient's age and cancer recurrence status on symptom distress, anxiety, and depression over time.

Past research suggests that psychosocial responses to advanced or recurrent cancer vary by age. This study compares the relative influences of patients' age and recurrence status on indicators of symptom distress, anxiety, and depression following a diagnosis of advanced cancer. A prospective study of advanced cancer support provided patient outcome data reported at baseline, 3-, and 6-month intervals. Cohorts were defined by age group and recurrence status and latent growth curves fit to anxiety, depression, and symptom distress outcomes. Middle-age recurrent patients reported the highest symptom distress, depression, and anxiety across time points. Older recurrent patients fared worse at baseline than older nonrecurrent patients, but outcome scores converged across time points. Recurrent cancer presents a distinct challenge that, for middle-age patients, persists across time. It may be beneficial to develop targeted educational and support resources for middle-age patients with recurrent disease.

Primary care physicians' involvement in the cancer care of older long-term survivors.

OBJECTIVE: This study investigated survivors' reports of primary care physicians' (PCPs) involvement in three key cancer survivorship activities: discussing cancer history, whether the PCP initiated discussions, and whether discussions led to tests/procedures. METHOD: The sample included 215 older survivors whose health care was maintained in primary care. Logistic regression explored predictors of the three activities, including demographics, cancer characteristics, survivor/PCP association characteristics, health characteristics, and psychosocial well-being. RESULTS: Nearly two thirds of survivors indicated discussing cancer history; most said discussions were PCP initiated and nearly half said discussions resulted in tests/procedures. Predictors of discussing cancer history were African American race and more comorbid conditions. PCP-initiated discussions were related to older age, surviving breast cancer, more years in the PCP's practice, and having less general health worry. The tests/procedures model was not significant. CONCLUSIONS: As older survivors focused more on other health concerns, PCPs remained attentive to cancer issues, prompting discussions about history and ordering tests.

Relationship quality and burden among caregivers for late-stage cancer patients.

OBJECTIVE: This study explores how caregiver relationship quality with family, patient, and patient's health care provider (HCP) is associated with subjective caregiver burden during the early treatment phase for late-stage cancer. METHOD: Burden and relationship quality were assessed in telephone interviews with family caregivers (FCGs) of advanced cancer patients. The five subscales of the Caregiver Reaction Assessment measured burden, while relationships were measured with the Family Relationship Index, the Family Inventory of Needs subscale of met needs, and a scale assessing family discord in cancer communication. RESULTS: Multiple linear regression analyses in SPSS (v16) of 420 FCGs showed that higher quality relationship with family was associated with lower burden in FCG abandonment, health, scheduling (p < 0.001) and finances (p < 0.01). Higher quality relationship with patients' HCPs was associated with lower burden in FCG abandonment (p < 0.05), health, and finances (p < 0.001). More discordant communication in patient relationship was associated with lower financial burden (p < 0.05). Relationship quality was not associated with caregiver self-esteem. CONCLUSIONS: Findings demonstrate that caregiver relationship quality with family and with HCP are important factors in understanding caregiver burden during the early treatment phase of late-stage cancer care.

Differences in oncologist communication across age groups and contributions to adjuvant decision outcomes.

The objective of this study was to assess potential age-related differences in oncologist communication during conversations about adjuvant therapy decisions and subsequent patient decision outcomes. Communication was observed between a cross-section of female patients aged 40 to 80 with early-stage breast cancer (n=180) and their oncologists (n=36) in 14 academic and community oncology practices in two states. Sources of data included audio recordings of visits, followed by post-visit patient interviews. Communication during the visit was assessed using the Siminoff Communication Content and Affect Program. Patient outcome measures included self-reported satisfaction with decision, decision conflict, and decision regret. Results showed that oncologists were significantly more fluent and more direct with older than middle-aged patients and trended toward expressing their own treatment preferences more with older patients. Satisfaction with treatment decisions was highest for women in their 50s and 60s. Decision conflict was significantly associated with more discussion of oncologist treatment preferences and prognosis. Decision regret was significantly associated with patient age and education. Older adults considering adjuvant therapy may find that oncologists' communication accommodations to perceived deficiencies in older adult cognition or communication challenge their decision-making involvement. Oncologists should carefully assess patient decision-making preferences and be mindful of accommodating their speech to age-related stereotypes.

Family caregiver engagement in a coping and communication support intervention tailored to advanced cancer patients and families.

We describe family caregiver (FCG) participation in a tailored coping and communication support intervention for advanced cancer patients and families. Preliminary descriptive data on characteristics and patterns of early engagement in the intervention for 132 FCGs are presented. Engagement assessed at an initial in-person meeting and the following 6 weeks includes problems raised, strategies used, and initiation, frequency, and mode of contact. A sizable proportion of FCGs were male, African American, and nonspouse. The FCGs had modest scores on a standard survey measure of burden yet volunteered caregiving demands as their primary problem. Other problems raised initially by more than 40% of the sample included psychological, practical, and communication with healthcare providers. Few reported physical and psychosocial difficulties. Engagement preferences expressed at the initial meeting largely mapped with actual engagement during the 6 weeks of intervention. Most FCGs were actively engaged during follow-up. Some (14%) did not opt for coping and communication support during this early treatment phase. This intervention is expected to affect quality of care and quality-of-life outcomes for FCGs over time from patient diagnosis to end of life. Findings will guide modification and dissemination of this intervention primarily in cancer clinics for the underserved.

Complexity of care needs and unstaged cancer in elders: a population-based study.

BACKGROUND: Little is known about the contribution of older patients' complexity of care needs (COCN) to unstaged cancer, or incomplete evaluation of the extent of disease. We aimed at examining the association between the patients' COCN at baseline and unstaged cancer. METHODS: The study used linked databases consisting of the Ohio Cancer Incidence Surveillance System (OCISS), Medicare and Medicaid enrollment files, the home health care Outcome and Assessment Information Set (OASIS), and the Long Term Care Minimum Data Set (MDS). The study population included patients 65 years of age or older diagnosed with incident breast (n=4,404), prostate (n=5,334), or colorectal cancer (n=4,822) in year 2000. The outcome of interest was unstaged cancer. Patients were identified with high COCN if they were admitted to a nursing home, with moderate COCN if they received home health services, and with low COCN if they were neither admitted to a nursing home nor received home health services, at baseline, or in the 6 months prior to cancer diagnosis. We employed logistic regression analyses to evaluate the independent association between COCN and unstaged cancer after adjusting for patient demographics and socioeconomic attributes. RESULTS: The proportion of unstaged cases increased significantly with older age, by Medicaid status, and by COCN at baseline. Compared with patients with low COCN, those with higher complexity were four to five times as likely to have unstaged cancer. CONCLUSION: The occurrence of unstaged cancer follows a systematic pattern of increase by age, Medicaid status, and COCN at baseline.

Appraisal of the cancer experience by family members and survivors in long-term survivorship.

This study assessed the appraisal of the stressfulness of the cancer experience and its correlates for family members and older survivors living in the long-term survivorship phase of the disease. On average, family members appraised the cancer experience as more stressful than their surviving relatives. Beliefs about the effect of the diagnosis and treatment on family members were important correlates for both family members and survivors in the appraisal process. Cancer characteristics were not related to appraisal for survivors, but stage at diagnosis was associated with a more stressful appraisal for family members. Demographic characteristics were unrelated to appraisal for family members, but being African-American was linked to a less stressful appraisal for survivors. These findings highlight the stressful impact of the cancer experience on family members and can help guide health care interventions which include family members from African-American and White ethnicities.

Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool.

Families, as a unit, play an important role in the process of making decisions about care for and with adult cancer patients. Families often step in as the patient's advocate and primary decision-maker as the patient's condition deteriorates. How well caregivers fulfill that role may depend on the level of congruence between the family members and the patient. Disagreements may jeopardize processes of decision-making and treatment choice. To facilitate the clinical assessment process and to provide a tool for research, we are designing an instrument that can validly and reliably assess the level of family discord concerning the treatment of late stage cancer as they consider participation in clinical trials, palliative care and salvage treatment such as chemotherapy designed to decrease tumor burden without hope of cure. Development of the instrument is a four step process to develop and test the instrument: (1) formative interviewing with lung cancer patients and their family caregivers to identify and develop a comprehensive list of domains and items; (2) refinement of the items' wording with a sample of 43 patients and 67 family caregivers; (3) testing the reduced item pool to determine statistical and content validity and reliability with an initial of sample of 42 patients and their primary caregivers; (4) examination of the 30-item scale's properties with 160 lung cancer patients and their primary caregivers.

Cancer in the elderly.

As the population expands, over the period from 2000 to 2050, the number and percentage of Americans over age 65 is expected to double. This population expansion will be accompanied by a marked increase in patients requiring care for disorders with high prevalence in the elderly. Since cancer incidence increases exponentially with advancing age, it is expected that there will be a surge in older cancer patients that will challenge both healthcare institutions and healthcare professionals. In anticipation of this challenge, researchers at the Case Comprehensive Cancer Center, Case Western Reserve University, Cleveland, Ohio are conducting a series of investigations focused on the intersection of aging and cancer. Studies will be addressed in the high priority research areas of 1) Treatment Efficacy and Tolerance, 2) Effects of Comorbidities, 3) Psychosocial Issues, and 4) Biology of Aging Cancer.

Families of long-term cancer survivors: health maintenance advocacy and practice.

Research on cancer and aging has addressed health maintenance issues for older adults in long-term cancer survivorship, but not their family members. The current study focused on two aspects of health maintenance for families: advocacy and practice. Regression analyses explored the effects of demographic characteristics and perceptions during diagnoses and treatments on family members' health maintenance in long-term survivorship. Family members were acting as health maintenance advocates for their surviving relatives. Advocacy was related to being a caregiver during diagnosis and treatment. In terms of their own health, family members were practicing a high number of health maintenance activities. Practice was associated with being a caregiver during diagnosis and treatment and with being older and White. Implications for interventions and future research with family members are discussed.