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The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 63:960-968 (2008)
© 2008 The Gerontological Society of America

SPECIAL SECTION

Patient Age, Well-Being, Perspectives, and Care Practices in the Early Treatment Phase for Late-Stage Cancer

Julia Hannum Rose, Elizabeth E. O'Toole, Douglas Einstadter, Thomas E. Love, Christina A. Shenko and Neal V. Dawson

1 Case Western Reserve University School of Medicine, Cleveland, Ohio.
2 MetroHealth Medical Center, Cleveland, Ohio.
3 Louis Stokes Cleveland VAMC-GRECC, Ohio.
4 Case Comprehensive Cancer Center Program on Aging-Cancer Research, Cleveland, Ohio.

Address correspondence to Julia Hannum Rose, PhD, MA, Department of Medicine–Geriatrics and Palliative Care, Case Western Reserve University, 2500 MetroHealth Drive R245A, Cleveland, Ohio 44109. E-mail: julia.rose{at}case.edu


   Abstract
Top
 Abstract
Methods
 Results
 Discussion
 References
 
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.

Key Words: Late-stage cancer • Age • Well-being • Care practices

AT different stages of the adult life span, a diagnosis of incurable cancer holds different meanings for patients, health care providers, and society (1–4). Although patient autonomy in medical decision making is valued in our society, treatment decisions often are made with insufficient attention to patients' perspectives and wishes (5–7). Studies suggest that perspectives of cancer patients and/or their physicians may vary, in part depending on patient age (8–11). Age-related differences have been reported for advanced cancer patients hospitalized near the end of life (1,8), but no studies have compared middle-aged (40–60 years) and young-old (60–80 years) patients receiving outpatient care during the early treatment period for late-stage cancer.

Psychosocial attributes and well-being are important considerations in assessing age effects during the early treatment phase for advanced cancer patients (12,13). Anxiety and depression (13–17), spiritual well-being (18,19), and social support (13,20,21) all have been shown to differ by age in previous psycho-oncology research. These attributes also may be associated with decision making about care. Family discord in cancer communication (22), and patients' health information-processing style (23,24) have been linked to patients' decision making and adherence behaviors in cancer care, although age differences have not been examined.

Cancer patients' comorbidities and physical functioning are related to age and have been associated with treatment practices (2,11), especially the type and intensity of resource utilization during hospitalization (25). Similarly, oncologists' prognostic estimates for survival may be related to patient age and may affect subsequent treatment decisions (1,8). Oncologists' perspectives on patients' aggressiveness of care treatment goals have been shown to differ for older patients and to influence treatment decisions independent of patient preferences (1). Patients' perspectives regarding their own prognosis, willingness to tolerate adverse health states (5,26,27), and physician communication and decision making may differ by age (10,28,29) and may be associated with care practices.

Although the importance of considering cancer patients' psychosocial needs has been recently emphasized (12), the relationship between patient age and psychosocial characteristics and between these characteristics and care practices has not been studied previously. As part of a randomized controlled trial to test the effects of a coping and communication support intervention for advanced cancer patients, we examined age-related differences in patient characteristics, including well-being, care perspectives, and preferences, and the relationship between these patient characteristics (including age) and subsequent care practices: care communication, pain management, and acute care utilization during the early treatment phase of late-stage cancer.


   METHODS
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Results
 Discussion
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Participants
The study sample consisted of 323 middle-aged (40–60 years; N = 174) and young-old (61–80 years; N = 149) patients diagnosed with late-stage cancer within the past year. All patients were enrolled in a randomized controlled trial to test the effects of a coping and communication support intervention for advanced cancer patients (30) and received their care at the MetroHealth Medical Center or Veterans Affairs Hospital in Cleveland, Ohio. Inclusion criteria were: age >40 years, recent diagnosis of advanced stage cancer, no referral yet to hospice, intact cognition, and ability to speak English. Based on disease stage (i.e., Stage IV cancers, Stage III lung, pancreatic, or liver cancer) or an oncologist's prognostic estimate for Stage IV hematologic/lymphatic cancers. All participants had a median life expectancy of 1 year or less. Approximately 71% of patients determined to be eligible enrolled in the study. The percentage of patients with each cancer type was: lung, 37%; gastrointestinal, 23%; genitourinary, 10%; head and neck, 10%; breast, 7%; reproductive, 5%; hematologic, 3%; sarcomas, 3%; and unknown, 2%.

Measurements
All patients and their treating oncologists underwent baseline interviews. We collected information on patients' sociodemographic characteristics, including age, gender, race, years of formal education, marital status, religious affiliation, income (both median census tract, i.e., "neighborhood" income and self-reported personal annual income), insurance type, site of care, and time from diagnosis of late-stage cancer to study enrollment. Psychosocial attributes and well-being measures included depression and anxiety (Profile of Mood States [POMS] – Short Form) (31), health information-processing style (Miller Behavioral Style Scale) (32,33), social support (Medical Outcomes Study Social Support Scale) (34), spiritual well-being (Functional Assessment of Chronic Illness Therapy–Spiritual Well-being [FACIT-SP]) (35), and a measure of family discord in cancer communication (22). Physical and functional status measures included severity of illness (count of comorbidities) (36,37), symptom distress (modified Symptom Distress Scale) (38), the prognostic estimate of each patient's oncologist for the patient's probability of survival to 6 months (1), activities of daily living (ADLs) (39), and instrumental ADLs (IADLs) (37). Care perspective measures included patients' prognostic estimates for their own survival and ability for self-care in 6 months, willingness to tolerate adverse states all the time (40), and perception of each patient's oncologist of the patient's aggressiveness of care treatment goal (1). Patients' satisfaction with their oncologist's explanations and decision-making practices over several recent visits was assessed using the Functional Assessment of Chronic Illness Therapy–Treatment Satisfaction–Patient Satisfaction (FACIT-TSPS) (41); treatment preference measures included patient-reported aggressiveness of care treatment goal, and preference for cardiopulmonary resuscitation (CPR) (see Appendix for a detailed description of measures).


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  		APPENDIX Description of Measures.

 
Outpatient and inpatient medical records covering the first 30 days after study enrollment were reviewed to assess cancer-related care practices. Care communication was assessed in documented discussions about end-of-life care, the number of unscheduled health care provider-initiated follow-up contacts (e.g., phone, e-mail) with the patient or family, and the number of unscheduled patient or family member-initiated contacts with health care providers. Pain assessment and management was assessed using the proportion of outpatient pain assessments in which the patient reported a score of ≥4 on a 10-point scale, and whether the patient had been prescribed opioids. Acute care utilization was assessed by documentation of one or more emergency department or urgent care visits and/or hospital admissions (see Appendix).

Statistical Analysis
All analyses were performed using SAS software (version 9.1.3; SAS Institute Inc., Cary, NC). To assess differences between the age groups in patient well-being, patient and physician perspectives, patient preferences, and care practice outcomes, we used chi-square and t tests, as appropriate. To examine associations between care outcomes and patient characteristics (years of age, well-being, perspectives, and preferences), we built multiple linear regression models for the continuous outcome (proportion of pain assessments >4), Poisson regression models for counts of unscheduled contacts, and logistic regression models for our dichotomous outcomes (discussions about end of life, opioid prescriptions, emergency department/urgent care visits, and hospitalizations). Each model involved the same predictor space as described above, including sociodemographic and situational variables as adjusters. Variables of interest in these models included age (operationalized as a continuous predictor), psychosocial attributes, well-being, severity of illness, functional limitations, care perspectives, and treatment preferences. For missing values of our predictor items and scales, we used full multiple imputation as implemented in the MI and MIANALYZE procedures in SAS (42). Overall, <1% of the data were missing.


   RESULTS
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Discussion
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The sociodemographics of the study population, stratified by age group, are shown in Table 1. A larger proportion of older patients were male, Caucasian, married, affiliated with a religion (especially Catholicism), insured, and in a higher income level. The two age groups were similar in the average number of years of formal education (12 years) and time from late-stage cancer diagnosis to study enrollment (9 weeks).


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  		Table 1. Sociodemographic Characteristics by Patient Age Group.

 
Psychosocial well-being, severity of illness, functional status, care perspective, and treatment preferences of the patients stratified by age group are shown in Table 2. Health information processing style (i.e., monitoring: the tendency to actively seek out ["monitor"] information; blunting: the tendency to avoid ["blunt"] health-relevant information) was similar across the two age groups, as was spiritual well-being, social support, and perceived family discord in cancer communication (i.e., the discrepancy [discord] between patient and family perspectives on cancer communication and decision making). Younger patients exhibited higher scores on depression and anxiety scales and reported more symptom distress than did older patients (p <.001), whereas older patients had more comorbidities (p <.001). There were no age group differences in functional limitations (ADLs or IADLs). Oncologists' prognostic estimates for patients' survival to ≥6 months and the difference between oncologists' and patients' prognostic estimates were similar across age groups. All patients regardless of age group exhibited similar high expectations for self-care in 6 months, had relatively low willingness to tolerate adverse states, and were generally satisfied with their oncologist's explanations and decision-making practices. In contrast, younger patients were slightly more likely to desire more aggressive care and CPR. Oncologists correctly perceived that younger patients desired more aggressive care, but overestimated patients' preferences for aggressive care regardless of patient age.


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  		Table 2. Psychosocial and Physical Well-Being, Perspectives, and Preferences by Patient Age Group.

 
Cancer-related care practices, including care communication, pain assessment and management, and acute care utilization stratified by age group are shown in Table 3. Age group differences were noted in care communication and pain management, but not in acute care utilization. Older patients and their family members were less likely to be contacted outside of clinic visits by health care providers, and were less likely to be prescribed opioids. Only a small percentage of patients in either age group had a documented physician discussion about end-of-life care goals. Approximately one quarter of patients in both age groups had an emergency department/urgent care visit and/or hospital admission during the 1-month period.


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  		Table 3. Documented Care Practices by Patient Age Group.

 
The patterns of association of patient characteristics with cancer-related care practices are shown in Table 4. Patient demographic and situational variables were controlled for in all of these models. Patients having more comorbidities were more likely to have had a documented end-of-life care discussion with the oncologist. Oncologists' prognostic estimates for patient 6-month survival were inversely associated with provider-initiated follow-up contacts. Patient or family-initiated contacts were positively associated with patient preference for more aggressive treatment, greater perceived social support, and, simultaneously, more family discord in cancer communication, lower monitoring, and higher blunting styles. More severe pain assessments were associated with greater symptom distress, patients being more satisfied with oncologists' decision making and less satisfied with explanations. Having one or more opioid prescriptions was associated with greater patient symptom distress and younger age. Emergency department or urgent care visits were not significantly associated with any patient characteristics, but greater symptom distress and a poorer self-prognosis for 6-month survival were associated with hospital admission.


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  		Table 4. Patterns of Association of Patient Characteristics and Cancer Care Practices.

 

   DISCUSSION
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 Methods
 Results
 Discussion
References
 
Age-Related Findings
Care practices including care communication, pain assessment and management, and acute care utilization are important to assess in the context of late-stage cancer, regardless of the type. Although previous studies have examined the association between care preferences and practices near the end of life (1,7,8,43), to our knowledge, this is the first study to focus on aging and account for a broad range of patient characteristics in relation to practice outcomes at an earlier phase of treatment, that is, before consideration of hospice referral. In our sample of patients, treated at two ambulatory cancer clinics in Cleveland, we observed that older patients were less psychologically and physically distressed and preferred that more attention be given to relief of pain and discomfort as a treatment goal. At the same time, older patients were equally likely to visit the emergency room or be hospitalized compared to younger patients and were less likely to be prescribed opioids, an important component of pain management.

We found that health information-processing style was similar across age groups. The higher levels of monitoring versus blunting observed in this population have been reported in previous research (23), and these health information-processing styles are of interest for their potential association with care practices (24). Although we expected to find age group differences in perceived social support, family discord in cancer communication, and spiritual well-being, none were found. Age differences in these areas may not be detectable until older age (44). As expected, we found more comorbidities in older patients, averaging two in addition to cancer; interestingly, regardless of age, these recently diagnosed late-stage cancer patients were not experiencing functional limitations. This finding on the low number of comorbidities may be due to the selection of ambulatory participants in our study as well as a possible survivor effect among older patients. Participants in both age groups were equally optimistic about their future survival and ability for self-care and exhibited relatively low willingness to tolerate adverse states all the time.

In contrast, younger patients had higher levels of depression, anxiety, and physical symptom distress. The observed three-point difference in the POMS depression scale between the two age groups is clinically important and has been associated with an approximately 10% decrease in survival time for hospitalized advanced cancer patients (45). These findings are consistent with those of previous research (13–15) and underline the need for age-sensitive interventions in addressing patient distress (30).

Overall, we found no age-related differences in satisfaction with oncologists' explanations or decision-making practices. Oncologists correctly perceived that their older patients preferred less aggressive care, but for all ages they overestimated the aggressiveness of care treatment goals that patients desired. Unlike previous studies among older patients hospitalized with advanced cancer (1), we found no age-related differences in oncologists' prognostic estimates for the older age group. Perhaps such differences only emerge as treatments begin to fail. Given that physicians are more accurate in their prognostic estimates than are cancer patients (46), these data underscore the need for better communication with patients beginning in the early treatment phase for late-stage cancer (47).

Members of the health care team were less likely to contact older patients or their families outside of clinic visits and, on average, patients and families contacted their health care providers less than one time over the month-long period. These findings warrant further study, given that the majority of these patients were receiving active forms of treatment that can involve symptoms and side effects. Furthermore, only a small number of patients in either age group had documented discussions with their oncologist about end-of-life care. This finding is consistent with those of previous studies indicating that this topic is seldom raised until active treatment begins to fail (1,43). Older patients were less likely to report severe pain or to be prescribed opioids, consistent with prior findings that older patients under-report symptoms to health care providers (48,49). That prescriptions for opioids were more likely to be given to younger patients raises further questions about potential age-related disparities in access to palliative care (50).

Age group differences in pain management are not explained by differences in acute care utilization, as the same percentage of patients in both age groups had one or more emergency department or urgent care visits and/or hospital admission during the 1-month period. In a previous study of hospitalized middle- and older-age patients with advanced cancer, the association between patient preferences and actual care practices was found only in the older age group (1). In the current study, we failed to find an association between patient preferences and actual care practices for patients in either age group. It is especially important to keep in mind that, on average, patients in both age groups preferred treatment that focused on relieving pain with some effort to extend life.

Patient Characteristics and Care Practice-Related Findings
In this study, we were also interested in examining patterns of association between patient characteristics (including age) and care practices previously described in the early treatment phase for late-stage cancer. Our findings show that a wide range of patient characteristics are salient to care practices. Psychosocial attributes, care perspectives, and treatment preferences were associated with patient/family-initiated activities whereas severity of illness was associated with provider-initiated communication, opioid prescription, and hospitalization. A number of characteristics had no significant association with care practices, at least in the early treatment phase for late-stage cancer. These included patient anxiety, spiritual well-being, limitations in physical functioning, prognostic estimates for self-care, and preferences for CPR. These findings highlight the importance of attending to patients' psychosocial attributes as well as severity of illness and of assessing care perspectives and preferences beginning in the early treatment phase for late-stage cancer.

Provider-initiated contacts with patients and families outside of clinic visits were most likely to occur for patients who had poorer prognoses as assessed by their oncologist. In contrast, patient and family-initiated contacts with health care providers were related to a number of psychosocial attributes, including lower monitoring and higher blunting styles. On the surface, a lower monitoring and higher blunting style is difficult to interpret as prompting more contacts. This finding coupled with our prior work demonstrating that higher blunting scores predict greater engagement in a coping and communication support intervention (51) suggests that avoidant behaviors either result in greater reliance on health care providers or lead to more interaction with health care providers as a way of coping. Advanced cancer patients and health care providers alike may not be fully aware of each others' primary motivations or concerns in communication (16,17), thus contributing to problems in patient-centered communication (47).

Patient preference for more aggressive treatment, greater perceived social support. Simultaneously, greater perceived family discord in cancer communication also were associated with patient- and family-initiated contacts with providers; perhaps these associations were more relevant to family-initiated contacts. The finding that patients who expressed a desire for aggressive care communicated more with health care providers outside of clinic visits may be related to their receiving more aggressive care. Increased follow-up contact may be related to symptom and side-effect management, if these patients are in fact receiving more aggressive care. This type of communication has not been sufficiently evaluated in previous research.

Patient reports of more severe pain were associated with higher satisfaction with oncologists' decision making. Because symptom reports are made to providers directly, it may be that patients who are more satisfied with these aspects of care are more open and honest in reporting actual pain. The relationship between patient reports of more severe pain and lower satisfaction with oncologists' explanations is difficult to interpret. Not surprisingly, patients experiencing greater symptom distress also reported more severe pain. Our models provided the least insight into emergency department/urgent care visits, which most likely are prompted by immediate circumstances in physical health. Findings for hospital admissions were more robust, indicating that greater symptom distress was most strongly associated with health care providers' decision to admit the patient.

Our study has several limitations. We studied patients who agreed to be part of a randomized controlled trial of a supportive care intervention and who received care in two oncology clinics providing care for underserved patients in one urban area. Our patients, especially the younger age group, were poorer and less likely to be insured compared to the general population. Our results might not be generalizable to other advanced cancer populations, to patients who are unwilling to be a part of a trial, or to those who are older or younger than the patients we studied. Our study is observational, and we are unable to draw any conclusions regarding causality. Although the study was designed with adequate sample size for the primary outcomes, it is possible that the absence of age-related associations may be due to inadequate power. Finally, there are few studies with which to compare our results, so the findings should be considered as preliminary and hypothesis generating.

Care of the advanced cancer patient is complex. In addition to providing the most up-to-date medical care, providers need to consider patient and family coping and communication style, patient psychosocial attributes, and patient preferences in cancer care decision making. Future studies should focus on patient age and psychosocial characteristics in the design of more patient-centered communication and treatment decision-making practices for advanced stage cancer.


   Acknowledgments
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 References
 
This project was funded by the National Cancer Institute (R01-CA10282), the Department of Veterans Affairs Health Services Research and Development Service (Merit: HR-03-255), and by the American Cancer Society (ROG-04-090-01; Julia Hannum Rose, Principal Investigator).

We acknowledge the contributions of research staff (Steven Lewis, Mary Ellen Lawless, Anthony D'Eramo, Nasim Seifi, and Mary Hutchinson).


   Footnotes
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Decision Editor: Darryl Wieland, PhD, MPH

Received November 13, 2007

Accepted January 17, 2008


   References
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C. S. Ritchie and D. Wieland
Advanced Illness Care in Older Adults: Many Lessons Yet To Be Learned
J. Gerontol. A Biol. Sci. Med. Sci., September 1, 2008; 63(9): 949 - 950.
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