Coping With Cancer Research Articles

Effects of the Advanced Practice Nurse-Led Psychoeducational Program for Colorectal Cancer Survivors

This study aimed to investigate the effects of an advanced practice nurse-led psychoeducational program on distress, anxiety, depression, coping with cancer (CWC), health promotion behavior (HPB), and quality of life (QOL) among colorectal cancer survivors. This study was designed as a quasi-experimental study with a non-equivalent control group pretest-posttest. The participants were survivors of colorectal cancer who underwent follow-up care. There were 39 survivors: 19 in the experimental group and 20 in the control group. The experimental group performed a psychoeducational program for 120 minutes per session, once a week for a total of six weeks, while the control group received routine education and counseling. Distress, anxiety, depression, CWC, HPB, and QOL were investigated before, immediately after, and 4 weeks after the intervention. The data were analyzed with SPSS/WIN ver. 24.0, using repeated measures ANOVA. There were significant interactions between time and group for distress and anxiety. In addition, CWC interacted with the total of CWC and interpersonal coping, and QOL interacted with the total of QOL and functional status. However, there were no significant differences in the depression or HPB scores. Based on the results of this study, we expect that this program can be used as an effective intervention for colorectal cancer survivors.

The lasting impact of the therapeutic alliance: Patient-oncologist alliance as a predictor of caregiver bereavement adjustment.

Caregivers of patients with advanced cancer provide extensive care and experience high levels of psychosocial distress. The patient-oncologist therapeutic alliance may be a modifiable factor that can prevent or reduce negative caregiver outcomes. Coping with Cancer (CwC) was a prospective, longitudinal, multisite cohort study of terminally ill cancer patients (life expectancy ≤6 months) and their informal caregivers, who were followed into bereavement (n = 68). Trained raters interviewed patients and caregivers upon study entry and also interviewed caregivers 6 months after the patient's death. Patients answered quantitative questions assessing their perception of the patient-oncologist therapeutic alliance (The Human Connection scale), and caregivers completed a measure of health-related quality of life (Medical Outcomes Study Short Form-36). Interviewers rated caregivers' level of emotional well being. Associations between therapeutic alliance and caregiver outcomes were analyzed using univariate analysis of variance and logistic regression analyses, controlling for baseline caregiver measures and confounding sample characteristics. A strong patient-oncologist therapeutic alliance was bivariately associated with caregiver self-report of less role limitation because of emotional problems, better social function and mental and general health-related quality of life, and better interviewer-rated emotional well being after the patient's death. After controlling for baseline measures and confounding sample characteristics, the correlation between patient-perceived therapeutic alliance and bereaved caregivers' mental health and interviewer ratings of bereaved caregivers' emotional well being remained significant. The influence of the patient-oncologist alliance may generalize beyond the patient to positively impact the caregiver. By developing a strong relationship with the patient, the oncologist may benefit the caregiver and the patient. This caregiver benefit may extend into bereavement.

Financial hardship and the intensity of medical care received near death.

Although end-of-life (EOL) care can present a substantial financial burden for the household, the influence of this burden on the intensity of care received at the EOL remains unknown. The goal of this study was to determine the association between financial hardship and intensive care in the last week of life. The Coping with Cancer (CwC) Study is a longitudinal, multisite cohort study of terminally ill cancer patients and their informal caregivers, September 2002-February 2008. Patients (N = 281) were followed from baseline to death, a median of 4.4 months after baseline assessment. Intensive care was defined as the use of resuscitation and/or ventilation in the patient's last week of life. Financial hardship was measured at study baseline as a positive response to whether the household had to use all or most of their savings because of the family member's illness. Twenty-nine percent reported financial hardship, and 9% received intensive EOL care. Patients reporting financial hardship had a 3.22 (95% CI: 1.38, 7.53) higher likelihood of receiving intensive EOL care compared with patients not reporting financial hardship. After adjusting for sociodemographic characteristics and patient preferences, patients reporting financial hardship had a 3.05 (95% CI: 1.22, 7.62) higher likelihood of receiving intensive EOL care. The depletion of a family's financial resources is a significant predictor of intensive EOL care, over and above the influence of sociodemographic characteristics and patient preferences.

Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The Caregiver's Perception of Patient Care Near Death

PurposeEnd-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care.Patients and MethodsData were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes.ResultsFactor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52–0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = −2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = −.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = −2.06; p≤.05).ConclusionCEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death.

6573 Background: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. None include caregiver perception of patient suffering and prolongation of death. We developed and validated the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a more comprehensive measure of caregiver-perceived quality of EOL care. Methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL’s factor structure was examined; reliability was evaluated using Cronbach’s α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach’s α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (r=.13; p≤.05) and hospice enrollment (z=-2.09; p≤.05), and negatively associated with bereaved caregiver regret (r=-.36, p≤.001) and trauma symptoms (z=-2.06; p≤.05). Conclusions: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver’s perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

Racial differences in the impact of financial hardship on the intensity of end-of-life cancer care.

6012 Background: Research suggests that Black cancer patients have higher end-of-life (EOL) medical costs than White patients; and that Black, compared with White, families are more likely to use all or most of their savings to pay for EOL care. Although Black cancer patients receive more intense EOL care than Whites, research has yet to determine the effect of financial hardship on receipt of intensive EOL care, and whether the effect varies by the patient’s race. Methods: Coping with Cancer (CwC) is a longitudinal, multi-site cohort study of advanced cancer patients and their informal caregivers recruited from September 2002-February 2008. CwC was designed to investigate Black/White differences in EOL care. The purpose of this analysis was to determine the association between baseline financial hardship and receipt of intensive EOL care in the last week of life (CwC deceased cohort N=342), and to identify racial differences in this association. Financial hardship was defined as whether the household had to use all or most of their savings due to the family member’s illness (response =yes/no). Intensive EOL care was defined as the receipt of ventilation or resuscitation in the last week of life assessed by medical record review and patient’s caregiver. Results: Patients reporting financial hardship had higher odds of receiving intensive EOL care (OR = 2.83, CI: 1.33, 6.05). After adjusting for socio-demographic characteristics the significant association remained (OR = 2.55, CI: 1.13, 5.81). Race-stratified fully adjusted models revealed no statistically significant association between financial hardship and intensive EOL care for Whites; however, for Blacks, those reporting financial hardship had over five times higher odds of receiving intensive EOL care (OR = 5.21, CI: 1.51, 17.99) compared to those not reporting financial hardship. Conclusions: Financial hardship was associated with greater likelihood of receiving intensive EOL care. The intensity of EOL care received by White patients was insensitive to financial hardship; in contrast Black patients reporting depletion of life savings for cancer care were much more likely to die receiving intensive EOL care than their non-financially strained counterparts.

Lifetime traumas and their influence on advanced cancer patients’ illness understanding and likelihood of end-of-life discussions.

9146 Background: Research on posttraumatic stress in cancer patients has focused on patient reactions to their cancer diagnosis. Few studies have examined the impact of lifetime traumatic events prior to diagnosis on how advanced cancer patients understand the life-threatening nature of their illness and how likely they are to discuss their end-of-life (EOL) wishes with their oncology providers. Methods: The Coping with Cancer (CwC) is an NCI-funded prospective, multi-institutional cohort study of advanced cancer patients and their caregivers. Participants were recruited from September 2002 to February 2008 from six comprehensive cancer centers across the United States. Lifetime traumas were captured by the number of events reported in response to the Structured Clinical Interview for the DSM-IV (SCID) Lifetime Posttraumatic Stress Disorder question that probed for “extremely upsetting” life events. Associations between patient characteristics and number of lifetime traumas were estimated as odds ratios using ordinal logistic regression. Associations between number of lifetime traumatic exposures, controlling for confounding patient characteristics, and patient Terminal Illness Acknowledgement (TIA) and reports of EOL discussions were estimated as odds ratios using multiple logistic regression. Results: After adjusting for race, education, and recruitment site, the number of lifetime traumas patients reported remained significantly associated with TIA (OR = 1.25, p = .034) and discussion of EOL wishes (OR = 1.29, p = .013). Conclusions: The greater the number of traumatic experiences reported by cancer patients the more likely they are to acknowledge that they are terminally ill and discuss their end-of-life wishes with their oncology providers. The impact of witnessing or experiencing serious or life-threatening events in the past appears to improve advanced cancer patients’ abilities to understand the seriousness of their condition and increases the likelihood that they will discuss their preferences for care at the end of life with their doctors.

Clinical Correlates of Suicidal Thoughts in Patients With Advanced Cancer

: Cancer patients are at heightened risk of suicide. Clinical correlates of suicidal ideation in advanced cancer patients were examined to identify those at risk and to inform the development of interventions to reduce suicidal ideation in this vulnerable group. : Coping with Cancer (CwC) is an NCI- and NIMH-funded multiinstitutional investigation examining psychosocial influences on the quality of life and care of advanced cancer patients. Baseline face-to-face interviews that assessed mental and physical functioning, coping, spirituality, and use of mental health services were conducted with 700 advanced cancer patients. : Compared with patients without suicidal ideation, the 8.9% of patients who reported suicidal thoughts were more likely to be white and report no affiliation with an organized religion (p < 0.05). Adjusted analyses revealed that cancer patients who met criteria for current panic disorder (adjusted odds ratio [95% confidence interval] 3.24 [1.01-10.4]) and posttraumatic stress disorder (3.97 [1.13-14.1]), who accessed mental health services (3.70 [2.07-6.67]), particularly psychotherapy (2.62 [1.20-5.71]), who were not feeling well physically, and who lacked a sense of self-efficacy, spirituality, and being supported were more likely than others to report thoughts of suicide (p < 0.05). : Advanced cancer patients who report suicidal thoughts are more likely to meet criteria for posttraumatic stress disorder and panic disorder, feel unsupported, lack a religious affiliation, spirituality, and a sense of self-efficacy, and experience more physical distress. Palliative care interventions that promote a sense of self-efficacy, spirituality, and support while minimizing physical distress may offer promise for reducing suicidal thoughts in this at-risk group.

Clinical trial participation among patients with advanced cancer: What characteristics most influence enrollment?

9073 Background: Studies using administrative data report that patients belonging to racial/ethnic minority groups are less likely to be enrolled in clinical trials. We studied a cohort of terminally ill cancer patients to determine: a) if the observed lower rate of racial/ethnic minority trial enrollment was accounted for by psychosocial confounding factors, and b) the factors most associated with clinical trial enrollment. Methods: Coping with Cancer (CwC) is an NCI/NIMH-funded multi-site, prospective longitudinal study of patients with advanced cancer. Baseline interviews with 358 patients captured clinical trial enrollment as well as patients’ medical status and psycho-social characteristics. Logistic regression models estimated associations between enrollment and select baseline characteristics. Stepwise, backward and subset model selection procedures were applied to identify confounding variables. Baseline characteristics significant at α= 0.05 were retained in the final model. Results: At baseline, a median of 4.4 months prior to death, 35 of 358 patients (9.8%) reported being enrolled in a trial. In unadjusted analyses, race/ethnicity, health insurance coverage, performance status, recruitment from Yale Cancer Center, having pancreatic or lung cancer, preferring life-extending care, not having discussed end-of-life care and not wanting to discuss life-expectancy with their physician were associated (p<0.05) with enrollment. In multivariate analysis, patients not reporting an end-of-life discussion (AOR, 0.18; 95%CI 0.04-0.72), not wanting to discuss life-expectancy (AOR, 0.31; 95%CI 0.04-0.83), and those receiving care at Yale (AOR, 12.26; 95%CI 1.09-4.84) were more likely than other patients to be trial enrollees. Conclusions: Patient race/ethnicity was not associated with clinical trial enrollment after adjustment for psychosocial covariates. Patients endorsing less engagement in discussions about end-of-life planning were more likely to be enrolled in a clinical trial.

What leads to better quality of life at the end of life?

9040 Background: When curative treatments are no longer options for dying cancer patients, the focus of care turns from prolonging life to promoting the best possible quality of life (QOL). Determining the factors that most enhance or detract from advanced cancer patients’ QOL will help to identify targets for interventions to improve patients’ QOL at the end-of-life (EOL). Methods: Coping with Cancer (CwC) is an NCI/NIMH-funded multi-site, prospective longitudinal study of advanced cancer patients. Baseline interviews with 393 patients and 393 caregivers assessed patients’ medical status, psycho-social characteristics, mental health, treatment preferences and patient-oncologist relationships. Post-mortem caregiver and clinician assessments conducted within one month of the patient’s death captured the QOL and care received by patients in the last week of life. Multiple regression models estimated associations between patient QOL and baseline characteristics and types of EOL care received. Akaike’s Information Criteria, which balances model fit and parsimony, determined the best model in the prediction of QOL in the last week of life. Results: In the final adjusted model, younger patients, White patients, patients with caregivers with generalized anxiety disorder, patients without a DNR order, and patients who stayed in the ICU during the last week of life were significantly (p<.05) more likely to have worse QOL in the last week of life. Patients who at baseline reported a sense of inner peace and harmony and who thought their oncologist saw them as a whole person were significantly (p<.05) more likely to have better QOL. Conclusions: Avoiding aggressive treatments in the last week of life (e.g., by completing a DNR order), having oncologists whom patients perceive as caring about them, promoting patients’ peacefulness and reducing anxiety among afflicted family caregivers are practical ways to improve patients’ EOL outcomes.

Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians

6505 Background: Physicians are concerned that end-of-life (EOL) discussions may distress terminally ill patients, and may not offer benefit. Little is known, however, about whether EOL discussions are associated with psychological distress and medical care received at the EOL. Methods: Coping with Cancer (CwC) is an NCI/NIMH-funded, prospective, longitudinal, multi-institutional study of 603 advanced cancer patients. Patients were interviewed on enrollment and followed until death; medical care received in the last week of life was obtained from chart review. Patients who reported having had EOL conversations were compared with those who did not on their degree of emotional distress [e.g. severity of psychological symptoms such as worry and rates of Major Depressive Disorder (MDD) using the Structured Clinical Interview for DSM-IV], terminal illness acknowledgement, treatment preferences, and medical care. Results: 188 of 603 patients (31.2%) reported EOL discussions with physicians. No mental health differences were found. Patients reporting EOL discussions were not more likely to meet criteria for MDD [rates were 7.2% vs. 7.4%, odds ratio (OR)=0.98, 95% confidence interval (CI) 0.50–1.90] or feel “nervous or worried” [adjusted least mean squares 2.81 vs. 2.77, t=-0.16, p=0.87]. They were more likely to acknowledge being terminally ill [adjusted OR (AOR)=2.24, CI 1.45–3.44], value comfort care over life extension (AOR=3.23, CI 2.02–5.17), and complete a DNR order (AOR= 3.62, CI 2.36–5.56). Among the 323 CwC decedents, patients reporting EOL conversations were less likely to undergo ventilation (AOR= 0.04, CI 0.004–0.43) or ICU admission (AOR= 0.21, CI 0.05–0.88), and more likely to receive hospice (AOR=2.13, CI 1.13–4.02). After propensity score matching, lower rates of ICU admission (AOR 0.21, CI 0.05–0.88) and ventilation (AOR 0.11, CI 0.01–0.87) remained. Conclusions: EOL care discussions between physicians and patients with advanced cancer are not associated with psychological distress. Furthermore, these discussions may result in increased patient understanding of illness severity, fewer invasive procedures, and lower rates of ICU admission at the EOL. No significant financial relationships to disclose.

Mutuality and specificity of mental disorders in advanced cancer patients and caregivers.

We sought to determine mutuality and specificity in rates of mental disorders between advanced cancer patients and their caregivers. Data from 168 non-genetically related patient-caregiver dyads participating in the multi-site Coping with Cancer (CWC) study were included in this analysis. Multivariate logistic regression analyses were conducted to examine associations between diagnoses of a psychiatric disorder in patients with diagnoses of psychiatric disorders in caregivers, and vice versa, controlling for confounders. When patients met criteria for any psychiatric diagnosis, then caregivers were 7.9 times (P < 0.0001) more likely to meet criteria for any psychiatric diagnosis, and vice versa. Caregiver Panic Disorder (PD) diagnosis was associated with patient Generalized Anxiety Disorder (GAD). Patient GAD was also associated with caregiver PD. Finally, patient PD was associated with caregiver GAD and caregiver Post-Traumatic Stress Disorder (PTSD). To our knowledge, this is the first study that demonstrates the mutuality of psychiatric disorders in both advanced cancer patients and their informal caregivers. Specifically, the presence of anxiety disorders in one partner (either caregiver or patient) was associated with a greater likelihood of anxiety disorders in the other. Results suggest that psychiatric distress should be assessed in both patients and their caregivers, and that mental illness in one should raise concern about the possibility of a psychiatric disorder in the other. Results also suggest that targeted interventions to address shared fears and concerns of patients and caregivers might reduce anxiety in the end phases of the patient's illness.

The Effects of a Problem-Solving Intervention with Spouses of Cancer Patients

The effectiveness of a Coping With Cancer (CWC) intervention program for spouses of cancer patients was compared to the usual services that are offered to the spouses of cancer patients by the Oncology Department of a regional medical center. Sixty-six spouses of cancer patients were recruited and randomly assigned to one of two groups-30 to the CWC program and 36 to usual services-and were assessed both before and after the intervention and again six months after the first assessment on measures of (1) perceived health status, (2) psychological well-being, (3) social support, and (4) coping behavior. The results indicated that patients whose spouses received services from the CWC program became significantly less depressed than did patients whose spouses did not. However, no other significant effects of the program were found for patients or spouses.

COPING WITH CANCER: AN ANNOTATED BIBLIOGRAPHY OF PUBLIC, PATIENT, AND PROFESSIONAL INFORMATION AND EDUCATION MATERIALS—National Cancer Institute, 1980, 113 pages. Copies of both publications available free in quantities of three or less from Office of Cancer Communications, National Cancer Institute, Room 10A18, Building 31, Bethesda, Maryland 21205

<b>COPING WITH CANCER: AN ANNOTATED BIBLIOGRAPHY OF PUBLIC, PATIENT, AND PROFESSIONAL INFORMATION AND EDUCATION MATERIALS</b>—National Cancer Institute, 1980, 113 pages. Copies of both publications available free in quantities of three or less from Office of Cancer Communications, National Cancer Institute, Room 10A18, Building 31, Bethesda, Maryland 21205

COPING WITH CANCER: A RESOURCE FOR THE HEALTH PROFESSIONAL—edited by Barbara Blumberg, Mara Flaherty, and Jane Lewis; National Cancer Institute, 1980, 145 pages pages. Copies of both publications available free in quantities of three or less from Office of Cancer Communications, National Cancer Institute, Room 10A18, Building 31, Bethesda, Maryland 21205

<b>COPING WITH CANCER: A RESOURCE FOR THE HEALTH PROFESSIONAL</b>—edited by Barbara Blumberg, Mara Flaherty, and Jane Lewis; National Cancer Institute, 1980, 145 pages pages. Copies of both publications available free in quantities of three or less from Office of Cancer Communications, National Cancer Institute, Room 10A18, Building 31, Bethesda, Maryland 21205