Cancer patient age and family caregiver bereavement outcomes.

PURPOSE: This study drew on life course theory to argue that the strains of cancer caregiving and bereavement are modified by the age of the patient. We expected that caregivers of middle-aged patients would be more distressed than caregivers of older patients. METHODS: This panel study conducted 199 interviews with family caregivers of advanced cancer patients; first following diagnosis and again shortly after the patient's death. RESULTS: Among caregivers of middle-aged patients (40-59), grief mediated the relationship between baseline caregiving and bereavement depressed mood, with grief increasing risk of depression in bereavement. Among caregivers of young-old patients (60-79), grief had a suppressor effect on the relationship between caregiving and bereavement depressed mood, showing greater distress during caregiving than at bereavement. CONCLUSIONS: Caregiving for middle-aged cancer patients may increase the risk for severe grief and depression, whereas caregivers of young-old cancer patients appeared to experience relief at bereavement. After bereavement, continued observation may be warranted for caregivers of a middle-aged patient; grief, added to the ongoing demands of their lives (which may include those left behind by a middle-aged patient), may put such caregivers at risk for greater psychological and emotional distress.

Grief and risk of depression in context: the emotional outcomes of bereaved cancer caregivers.

We investigated the relationships of grief and depression to cancer caregiving in early bereavement. We began with three expectations: (a) each outcome would reflect different situational predictors, (b) grief would be more directly related to such predictors, and (c) components of grief would relate differently to the caregiving context and depressed mood. We conducted telephone interviews with family caregivers of incurable cancer patients from two hospitals. A total of 199 family caregivers were interviewed at the time of the patient's diagnosis and reinterviewed 3 months after the patient's death. Results showed grief severity was predicted by caregiving circumstances, but bereavement depressed mood was largely unrelated to caregiving. Grief was the main predictor of depressed mood and mediated almost all other effects. We conclude that while grief may trigger depression, the dissimilar connection to context means that the two emotional states should not be equated based purely on similarity of expression.

Sleepiness in elderly veterans.

PURPOSE: This observational study seeks to describe the distribution of sleepiness among elderly male veterans and to explain the relationship between sleepiness and age, function, mobility, and depression in this population. METHODS: Veterans who were age 60 or older and had two or more functional limitations based on their activities of daily living or instrumental activities of daily living were recruited in outpatient clinics. They were recruited as part of a longitudinal study and completed questionnaires reported here at the 18-month data collection time point. RESULTS: Veterans report higher sleepiness than normal controls. Self-reported sleepiness scores are similar to those of patients who have been diagnosed with sleep disturbances. CONCLUSIONS: Interventions to identify and support aging veterans with perceived sleepiness should be developed and carefully evaluated.

Preferences for aggressive care in underserved populations with advanced-stage lung cancer: looking beyond race and resuscitation.

PURPOSE: This paper examines the relationship between race, religiousness, spiritual well-being, antitumor treatment and preference for aggressive care among Black and White patients with advanced stage lung cancer receiving ambulatory cancer care in an urban setting. METHODS: A cross-sectional exploration of patients enrolled in a Cleveland-based longitudinal study after initial diagnosis of advanced lung cancer were interviewed in Cleveland regarding religiousness, spiritual well-being, preferences for cardiopulmonary resuscitation (CPR), goals of aggressive care, and willingness to tolerate adverse health states. Receipt of antitumor treatment was identified from medical records. RESULTS: We analyzed data from 67 Black and 129 White patients (N=196). Regression analysis for CPR showed that race was not associated with preference for CPR (OR=1.12, CI 0.44-2.85). The odds of choosing CPR were three times higher among patients receiving antitumor treatment (OR=3.26, CI 1.12-9.44). Greater willingness to endure adverse health states was associated with higher spiritual well-being scores (b=0.12, CI 0.01-0.25). Choosing goals to extend life versus relieve pain was higher among persons with higher spiritual well-being as well (RRR=1.08, CI 1.01-1.16), yet the relationship with religiousness was negative (RRR=0.46, CI 0.22-0.98). CONCLUSIONS: After controlling for multiple factors, race was associated only with CPR, but not with other measures of preference for aggressive care. In addition, receipt of active antitumor treatment was positively associated with preference for CPR and spiritual well-being was important to setting end-of-life care goals and perspectives. Future directions for tailoring end-of-life care decision-making initiatives should move beyond race and discussions of CPR alone and focus on a full spectrum of patient beliefs and preferences at the end of life.

Relationships and emotional wellbeing among African American and White advanced cancer caregivers.

OBJECTIVE: Advanced cancer family caregivers who have good relationships with other family members and with patient's health care providers (PHCPs) have less emotional distress than caregivers with poor relationships. Given a history of different experiences in medical settings among Whites and African Americans, we examined moderation effects by race. METHODS: Baseline data from an ongoing study were collected via telephone interviews with 397 family caregivers of advanced cancer patients at two cancer clinics. Depressed mood and anxiety were measured with the 14-item Profile of Mood States. RESULTS: Caregivers reporting good relationships with family (p<.001) and PHCPs (p<.001) had lower anxiety and less depressed mood (family, p<.01; PHCP, p<.001). Caregiver race moderated relationship quality: Whites with good PHCP relationships felt less depressed mood (p<.01) and anxiety (p<.01). African Americans with good family relationships showed less depressed mood (p<.05), but no association with anxiety. CONCLUSION: Good relationships are important for caregivers, but PHCPs may have more influence on the wellbeing of White than of African American caregivers. PRACTICE IMPLICATIONS: Developing relationships with caregivers of advanced cancer patients may improve wellbeing for caregivers. In addition, creating strategies to support family relationships may be a useful intervention, especially for African American advanced cancer caregivers.

Modeling patient-centered communication: oncologist relational communication and patient communication involvement in breast cancer adjuvant therapy decision-making.

OBJECTIVE: Relational communication refers to those messages communicators naturally express that carry meaning about the type and quality of relationship they share. It is expected that patients of oncologists who express positive relational communication will be more communicatively involved in their office visits, and regret their decision for adjuvant therapy following surgery less. METHODS: One hundred eighty (180) audio-recorded discussions between oncologists (n=40) and early stage (I-III) breast cancer patients were coded with the Siminoff Communication Content and Affect Program (SCCAP). The data were used to test the relationships between patient demographics, oncologist relational communication, patient communication involvement and self-reported patient decision regret. RESULTS: After controlling for clinician clusters, oncologists' verbal (i.e., confirming messages) and nonverbal (i.e., direct and inclusive speech) relational communication is indirectly associated with lower patient decision regret via the mediating effect of greater patient communication involvement. CONCLUSION: Clinician relational communication provides an influential affective climate for decision-making that appears to have important effects on patients' decision confidence. PRACTICE IMPLICATIONS: Clinicians should recognize the potential of their own relational messages to facilitate patients' communication involvement in decision-making during cancer care.

Patterns of adaptation in patients living long term with advanced cancer.

BACKGROUND: With improved treatment, increasing proportions of patients with advanced cancer are surviving longer with their disease: into a second year after diagnosis and beyond. These longer term survivors face continuing challenges in selecting and shifting personal life goals and goals of care over years (rather than months) of life with incurable cancer. Studies are needed to explore adaptation over time in patients who are living longer term with late-stage cancer, including anxiety, depression, and spiritual well being, which are conceptualized as indicators of psychospiritual well being in patients with advanced cancer. METHODS: Psychospiritual well being and adaptation were explored in a study of middle-aged and older patients with advanced cancer (N=142) who survived into a second year after diagnosis and were assessed in interviews across 4 time points. Examining patterns of adaptation over time called for in depth analytical techniques to identify variation in key outcome trajectories. General growth mixture modeling was used to explore heterogeneity in adaptation using a multivariate parallel model of anxiety, depression. and spiritual well being. RESULTS: Modeling revealed 3 distinct group trajectories of psychospiritual well being and adaptation (low-worsening, moderate-improving, and high-stable). Age and education were correlated with group membership. Advanced cancer survivors who were older and had more years of education were more likely to be members of the high-stable group in psychospiritual adaptation throughout the study. CONCLUSIONS: The current findings suggested that psychospiritual adaptation, as measured in this study, is not uniform but is characterized by heterogeneous trajectories. The results contribute to the development of better hypotheses regarding the processes of adaptation in longer term survivors with advanced cancer and to the identification of potential subgroups at greatest risk for poor outcomes.

Establishing treatment fidelity in a coping and communication support telephone intervention for aging patients with advanced cancer and their family caregivers.

A randomized controlled trial of a nurse-delivered coping and communication support (CCS) intervention tailored to the preferences of middle-aged and older patients with advanced cancer and their family caregivers is tested for its value in improving outcomes for quality cancer care. An intervention study must be reliably delivered to estimate the accuracy of findings or make valid conclusions about the outcomes of research. The purpose of this article was to describe methodology for ensuring treatment fidelity in this patient-centered CCS intervention. Fidelity is maximized by ensuring that the CCS intervention is congruent with relevant theory, standardizing training and interventionist competence, and monitoring intervention delivery and documentation. We address unique challenges arising from using individualized interventions that preserve autonomy of the individual and are responsive to shifts in patients' needs and preferences over time. The challenge of nursing research on patient preference and coping communication requires both rigorous measurement of interventionist adherence to the intervention protocol and flexibility to allow for changing needs of patients and family caregivers.

Geriatric oncology and primary care: promoting partnerships in practice and research.

This supplement is a compilation of original work that was presented at an interdisciplinary conference on "Geriatric Oncology and Primary Care: Promoting Partnerships in Practice and Research" held in Cleveland, Ohio, April 3 to 4, 2008. An audience of 77 clinicians and researchers attended this conference, primarily coming from Ohio and adjacent states. Articles are organized around a conceptual framework to consider primary and shared care roles of primary care physicians (PCPs) and oncologists in the care of older patients with cancer and their families. Articles in Section One focus on evidence-based clinical practice and recommendations. Section Two includes articles on original psychosocial and health services research that inform this topic. Papers in this conference were developed in recognition of the greater prevalence and growing incidence of cancer in older adults; the unique geriatric expertise and practice considerations essential to the prevention and control of cancer in older adults; the important and effective roles that PCPs may play in such care; and the need to develop shared care models that foster collaboration between PCPs and oncologists, from cancer prevention through long-term survivorship and end-of-life care of older adults. Models of shared care between oncologists and PCPs should be tested and compared for optimal care of older patients with cancer and their families. Potential implications of ideally shared care include more-informed patient-centered decision-making, better adherence to treatment, improved match between older patient goals and treatments, and thus better outcomes.

Health and well-being in older married female cancer survivors.

OBJECTIVES: To investigate differences between older married female cancer survivors and a matched comparison sample on physical health and on effects of health on depressive symptomatology. DESIGN AND SETTING: National survey data from the 1992 Health and Retirement Study. PARTICIPANTS: Married women who reported having been diagnosed with cancer (N=245) and married women who did not report a cancer diagnosis but who matched the survivors on age, race, and ethnicity (N=245). MEASUREMENTS: Outcome measure was depressive symptomatology (modified CES-D). Predictors were multiple indicators of health and demographic characteristics. RESULTS: Cancer survivors reported significantly worse health on all indicators but not higher depressive symptomatology after health and demographics were controlled. Predictors of higher depression were fatigue, pain, and lower education. These effects did not differ between groups. CONCLUSION: Health impairment in cancer survivors highlights the need for ongoing follow-up care. Survivorship was associated indirectly with higher depressive symptomatology through its relationship with health impairment.

The role of primary care physicians in advanced cancer care: perspectives of older patients and their oncologists.

OBJECTIVES: To examine data from advanced cancer patients and their oncologists regarding patient age-related differences in patient and oncologist perspectives on involvement of primary care physicians (PCPs) in aspects of cancer management. DESIGN: Randomized controlled trial of a support intervention for patients with late-stage cancer treated in two teaching hospital-based cancer clinics caring for underserved populations. PARTICIPANTS: Three hundred fifty-seven patients who had an oncologist and PCP enrolled 2 to 3 months after an advanced cancer diagnosis. MEASUREMENTS: Sociodemographic data and structured interviews were used to assess patients' perceptions of PCP involvement in care discussions and decision-making and satisfaction with that involvement, oncologists' beliefs about how involved PCPs should be in these discussions and decisions, and their shared care practices. RESULTS: Older patients (>or=65) were more likely to have a PCP (P=.02). Patients reported a broad range of perceived PCP involvement and satisfaction with that involvement. Greater involvement was associated with greater satisfaction (P<.001). Half of oncologists reported themselves as PCP for more than 25% of their patients. Approximately half of oncologists reported that more older than younger patients had PCPs, yet only 20% reported differences in PCP involvement or in their communication with PCPs for older late-stage patients. CONCLUSION: Results support involvement of PCPs in advanced cancer care and demonstrate variable perspectives on PCP involvement. Matching patient preferences and practices may improve satisfaction. Clarification of elements in the partnership between patients, PCPs, and oncologists will inform efforts to optimally care for older patients with advanced cancer.

Predictors of engagement in a coping and communication support intervention for older patients with advanced cancer.

OBJECTIVES: To examine patterns and predictors of engagement in a coping and communication support (CCS) intervention tailored to the preferences of middle-aged and older patients in the early treatment phase for late-stage cancer. DESIGN: Randomized controlled trial examining processes and outcomes of a CCS intervention for patients with late-stage cancer over time. SETTING: Two ambulatory cancer clinics providing care for underserved populations in Cleveland. PARTICIPANTS: One hundred nine middle-aged (MA: aged 40-60) and 101 young-old (YO: aged 61-80) patients randomized to the CCS intervention, surviving to 3 months after enrollment and averaging 2 months of 24/7 access to the intervention. MEASUREMENTS: Engagement was assessed in the average number of patient-CCS practitioner (CCSP) contacts per month during the initial 2 months of access to the intervention. Baseline data from patient interviews and chart reviews were used to test a model of prediction. RESULTS: MA patients averaged more patient-CCSP contacts per month than YO patients (mean 2.6 +/- 2.5 vs 2.0 +/- 1.2, P=.02), although both age groups were engaged. African-American patients (P=.007) and those with a higher blunting style (P<.01), reporting more family discord in cancer communication (P=.009), and receiving fewer active cancer treatments (P=.008) were more engaged in the CCS intervention in the initial months. CONCLUSIONS: Psychooncology interventions individualized to patient preferences can effectively reach older and underserved populations. Such interventions may be especially important to patients using more avoidant behaviors, experiencing more family discord communicating about cancer, or receiving fewer aggressive treatments in the early treatment phase for late-stage cancer.

Patient age, well-being, perspectives, and care practices in the early treatment phase for late-stage cancer.

BACKGROUND: Among advanced-stage cancer patients, age is an important determinant of decision making about medical care. We examined age-related differences in patient well-being, care perspectives, and preferences, and the relationship between these patient characteristics and subsequent care practices including care communication, pain management, and acute care utilization during the early treatment phase of late-stage cancer. METHODS: Patient demographics, well-being, and care perspectives were assessed during patient and physician baseline interviews. Care practices were measured using outpatient and inpatient records for the 30-day period after baseline assessment. Multivariate regression models were used to examine the patterns of association of age and other patient characteristics with care practices. RESULTS: A total of 174 middle-aged and 149 older patients with recently diagnosed late-stage cancer were included. Older patients had more comorbidities but lower levels of depression, anxiety, and symptom distress. Older patients preferred pain relief/comfort as a treatment goal, but received fewer prescriptions for opioids. Whereas provider-initiated communication with patients/families was positively associated with severity of illness, patient/family-initiated communication was associated with patient psychosocial attributes and care perspectives. Satisfaction with care was inversely associated with reports of pain. Symptom distress was positively associated with subsequent opioid prescriptions and hospitalizations. CONCLUSIONS: Our results help to explain the role of patients' psychosocial attributes, care perspectives, and preferences in subsequent care practices during the early treatment phase for late-stage cancer. Age-related differences in patient well-being and care perspectives suggest a role for age-sensitive interventions in the treatment of advanced cancer patients.

The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF): a new measure.

OBJECTIVES: Caregivers and cancer patients frequently have conflicting and unmet communication needs. The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) is a new instrument that assesses congruence in patient-family caregiver communication for both research and clinical purposes. METHODS: The scale was developed using a sample of 190 lung cancer patient-caregiver pairs. Standard psychometric procedures were used to develop and test the scale including qualitative item pool development, item reduction and ascertainment of scale properties. RESULTS: The multiple correlation of the 18-item CCAT-PF scale with the longer 30-item scale was 0.94. All but three items had less than 20% variance accounted for when each item was regressed on the remaining 17, indicating that responses to an individual item were not readily predicted by the remaining items. Test re-test reliability was 0.35 and Cronbach's alpha was 0.49 as the CCAT-PF scale represents the sum of mostly independent items. Higher CCAT-PF scores were significantly correlated with greater patient depression, greater patient perceived family conflict, lower patient-caregiver assessment and well-being and less expressiveness and family cohesion. For both patients and caregivers, physical, functional and emotional well-being were not associated with CCAT-PF scores. CONCLUSION: The CCAT-PF is a brief but reliable and valid tool. Although administering both family and patient versions is optimal, administering it to a patient or family caregiver only also produces reliable information.

A coping and communication support intervention tailored to older patients diagnosed with late-stage cancer.

As our society ages, increasing numbers of older Americans will be diagnosed and eventually will die of cancer. To date, psycho-oncology interventions for advanced cancer patients have been more successful in reaching younger adult age groups and generally have not been designed to respond to the unique needs and preferences of older patients. Theories and research on successful aging (Baltes and Baltes 1990; Baltes 1997), health information processing style (Miller 1995; Miller et al 2001) and non-directive client-centered therapy (Rogers 1951, 1967), have guided the development of a coping and communication support (CCS) intervention. Key components of this age-sensitive and tailored intervention are described, including problem domains addressed, intervention strategies used and the role of the CCS practitioner. Age group comparisons in frequency of contact, problems raised and intervention strategies used during the first six weeks of follow up indicate that older patients were similar to middle-aged patients in their level of engagement, problems faced and intervention strategies used. Middle-aged patients were more likely to have problems communicating with family members at intervention start up and practical problems as well in follow up contacts. This is the first intervention study specifically designed to be age sensitive and to examine age differences in engagement from the early treatment phase for late-stage cancer through end of life. This tailored intervention is expected to positively affect patients' quality of care and quality of life over time.

The structure and function of frail male veterans' informal networks.

OBJECTIVE: This research focuses on the role of informal networks in providing emotional support, instrumental aid, and assistance with chronic disease management for frail male veterans. METHODS: Telephone interviews were conducted with nursing home eligible veterans living in the community. Name-generating questions were used to illicit network members. RESULTS: Data on 198 frail male veterans indicate that they have about three people they rely on for emotional support, instrumental aid, health appraisal, and health monitoring. Networks are composed primarily of family, and adult sons are mentioned almost as often as adult daughters. DISCUSSION: Findings illustrate not only the role women play as providers of the majority of informal care to veterans but also the substantial role adult sons have in providing support to their fathers. Many veterans are at risk of institutionalization by having no one to provide instrumental support and health monitoring.

Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer.

PURPOSE: To evaluate relationships among physician and cancer patient survival estimates, patients' perceived quality of life, care preferences, and outcomes, and how they vary across middle-aged and older patient groups. PATIENTS AND METHODS: Subjects were from the Study to Understand Prognoses and Preferences for Risks of Treatments (SUPPORT) prospective cohort studied in five US teaching hospitals (from 1989 to 1994), and included 720 middle-aged (45 to 64 years) and 696 older (> or = 65 years) patients receiving care for advanced cancer. Perspectives were assessed in physician and patient/surrogate interviews; care practices and outcomes were determined from hospital records and the National Death Index. General linear models were used within age groups to obtain adjusted estimates. RESULTS: Although most patients had treatment goals to relieve pain, treatment preferences and care practices were linked only in the older group. For older patients, preference for life-extending treatment was associated with more therapeutic interventions and more documented discussions; cardiopulmonary resuscitation (CPR) preference was linked to more therapeutic interventions and longer survival. For middle-aged patients, better perceived quality of life was associated with preferring CPR. In both groups, patients' higher survival estimates were associated with preferences for life-prolonging treatment and CPR; physicians' higher survival estimates were associated with patients' preferences for CPR, fewer documented treatment limitation discussions about care, and actual 6-month survival. More discussions were associated with readmissions and earlier death. More aggressive care was not related to outcomes. CONCLUSION: Fewer older patients preferred CPR or life-prolonging treatments. Although older patients' goals for aggressive treatment were related to care, this was not so for middle-aged patients. Aggressive care was not related to prolonged life in either group.