Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

Eating Disorders in Girls and Women With Type 1 Diabetes: A Longitudinal Study of Prevalence, Onset, Remission, and Recurrence.

OBJECTIVE: Girls and women with type 1 diabetes are at increased risk for developing eating disorders (EDs), and these disorders are associated with serious diabetes-related medical complications. This study describes the longitudinal course of disturbed eating behavior (DEB) and EDs in a cohort with type 1 diabetes. RESEARCH DESIGN AND METHODS: A total of 126 girls with type 1 diabetes receiving care for diabetes at The Hospital for Sick Children in Toronto participated in a series of seven interview-based assessments of ED behavior and psychopathology over a 14-year period, beginning in late childhood. Survival analysis was used. RESULTS: Mean age was 11.8 ± 1.5 years at time 1 and 23.7 ± 2.1 years at time 7. At time 7, 32.4% (23/71) met the criteria for a current ED, and an additional 8.5% (6/71) had a subthreshold ED. Mean age at ED onset (full syndrome or below the threshold) was 22.6 years (95% CI 21.6-23.5), and the cumulative probability of onset was 60% by age 25 years. The average time between onset of ED and subsequent ED remission was 4.3 years (95% CI 3.1-5.5), and the cumulative probability of remission was 79% by 6 years after onset. The average time between remission of ED and subsequent recurrence was 6.5 years (95% CI 4.4-8.6), and the cumulative probability of recurrence was 53% by 6 years after remission. CONCLUSIONS: In this longitudinal study, EDs were common and persistent, and new onset of ED was documented well into adulthood. Further research regarding prevention and treatment for this vulnerable group is urgently needed.

Supportive and palliative care for metastatic breast cancer: resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement.

Many women diagnosed with breast cancer in low- and middle-income countries (LMICs) present with advanced-stage disease. While cure is not a realistic outcome, site-specific interventions, supportive care, and palliative care can achieve meaningful outcomes and improve quality of life. As part of the 5th Breast Health Global Initiative (BHGI) Global Summit, an expert international panel identified thirteen key resource recommendations for supportive and palliative care for metastatic breast cancer. The recommendations are presented in three resource-stratified tables: health system resource allocations, resource allocations for organ-based metastatic breast cancer, and resource allocations for palliative care. These tables illustrate how health systems can provide supportive and palliative care services for patients at a basic level of available resources, and incrementally add services as more resources become available. The health systems table includes health professional education, patient and family education, palliative care models, and diagnostic testing. The metastatic disease management table provides recommendations for supportive care for bone, brain, liver, lung, and skin metastases as well as bowel obstruction. The third table includes the palliative care recommendations: pain management, and psychosocial and spiritual aspects of care. The panel considered pain management a priority at a basic level of resource allocation and emphasized the need for morphine to be easily available in LMICs. Regular pain assessments and the proper use of pharmacologic and non-pharmacologic interventions are recommended. Basic-level resources for psychosocial and spiritual aspects of care include health professional and patient and family education, as well as patient support, including community-based peer support.

Depression, disturbed eating behavior, and metabolic control in teenage girls with type 1 diabetes.

BACKGROUND: Depression and disturbed eating behavior (DEB) are more common in girls with type 1 diabetes (T1D) than in the general population, and may negatively affect metabolic control. OBJECTIVE: To examine the relationship among depression, DEB, and metabolic control in teenage girls with T1D. METHODS: Metabolic control, body mass index and interview-ascertained symptoms of depression, and DEB were assessed twice in 98 girls with T1D, 9-14 y at baseline and 5 yr later at 14-18 yr. RESULTS: At year 5, 12.2% of girls reported current depressive symptoms, 49.0% reported current DEB, and 13.3% had a full or subthreshold eating disorder (ED). Eating Disorder Examination score was higher in girls with depression (1.4 ± 1.3 vs. 0.5 ± 0.7; p = 0.03), and 75.0% of girls with depression also endorsed DEB vs. 45.3% of girls without depression (p = 0.05). Girls with an ED were at high risk for depressive symptoms; 69.2% reported depressive symptoms vs. 22.0% of girls with no DEB (p = 0.004). Metabolic control was not significantly associated with either depression or DEB in this cohort. A regression model using baseline and year 5 depression and DEB to predict year 5 hemoglobin A1c was not significant overall. CONCLUSIONS: Depression and DEB were common and frequently concurrent in this cohort. It was encouraging that poor metabolic control was not yet strongly associated with either depression or DEB. Early detection and treatment may help to prevent the development of entrenched difficulties in this triad of mood, eating behavior, and metabolic control in a vulnerable population.

The burden of stress in head and neck cancer.

BACKGROUND: Head and neck cancer (HNCa) introduces numerous stressors. We developed the Cancer-Related Stressors Checklist (CRSC), which documents exposure to seven categories of common stressors and emotional distress. We surveyed HNCa survivors and examined associations among exposure to cancer-related stressors, illness intrusiveness (i.e., cancer-induced interference with lifestyles, activities, and interests), and distress. We also investigated whether reported exposure rates differ between self-administered and interviewer-administered measures. METHODS: Respondents included HNCa survivors, stratified by sex, who participated in one of two clinical studies (N1 = 162; N2 = 408) examining the psychosocial impact of illness intrusiveness. All completed the CRSC, the Center for Epidemiologic Studies Depression Scale, and the Illness Intrusiveness Ratings Scale. Study 1 respondents self-administered the instruments; an interviewer administered them in Study 2. We gathered clinical data by self-report and from medical records. RESULTS: High inter-rater reliability corroborated the 8-subscale structure of the CRSC (Krippendorff alpha = .92). Cancer-related stressor exposures differed significantly across categories (interpersonal stressors were most common). Controlling for empirically identified covariates and distress, exposure to each cancer-related stressor correlated significantly and uniquely with illness intrusiveness. All stressor categories correlated significantly with distress, but coefficients were low to moderate, substantiating incremental validity. Respondents reported fewer exposures when materials were self-administered as compared with interviewer-administered, but reported distress levels did not differ by mode of administration. CONCLUSIONS: Cancer-related stressors are common and burdensome in HNCa and, therefore, merit clinical attention. Identifying specific stressors will allow more targeted and effective interventions to alleviate and prevent distress.

Referral practices of oncologists to specialized palliative care.

PURPOSE: To describe current referral practices of oncologists to specialized palliative care (SPC) and define demographic characteristics, practice situations, and opinions associated with referral. METHODS: Physician members of the Canadian Association of Medical Oncologists, Canadian Association of Radiation Oncologists, and Canadian Society of Surgical Oncology were invited to participate in an anonymous survey assessing SPC referral practices. Participants received two e-mailed and two mailed invitations. RESULTS: The response rate was 72% (603 of 839 physicians); 37% were medical oncologists/hematologists, 50% were radiation oncologists, and 12% were surgical oncologists. Ninety-four percent reported that SPC was available to them, but only 37% reported that these services accepted patients on chemotherapy. Eighty-four percent referred terminally ill patients usually/always, but generally for uncontrolled symptoms or discharge planning late in the disease course. One third would refer to SPC earlier if it was renamed supportive care. Predictors of higher referral frequency included comprehensiveness of available SPC services (P = .004), satisfaction with SPC availability (P < .001), SPC acceptance of patients receiving chemotherapy (P < .001), and oncologist ease with referring patients to a palliative care service before they were close to death (P < .001). Controlling for specialty, predictors of referral at diagnosis or during chemotherapy, rather than later, included satisfaction with SPC service availability (P < .001) and SPC service acceptance of patients on chemotherapy (P < .001). CONCLUSION: Oncologists referred patients frequently to SPC, but generally late in the disease course for patients with uncontrolled symptoms. Availability of comprehensive SPC, especially for patients receiving chemotherapy, and persisting definitional issues seem to be the main barriers preventing timely referral.

The consequences of anxious temperament for disease detection, self-management behavior, and quality of life in Type 2 diabetes mellitus.

OBJECTIVE: The purpose of this study is to examine the consequences of anxious temperament for disease detection, self-management behavior, and quality of life in Type 2 diabetes mellitus (T2DM). METHOD: A sample of 204 individuals newly diagnosed with T2DM completed measures of anxious temperament, self-management behavior, and quality of life; participants also supplied a blood sample for glycated hemoglobin (A1C) analysis at initial diagnosis (baseline) and at 6-month follow-up (as indicators of disease progression at diagnosis and achieved glycemic control, respectively). RESULTS: Anxious temperament was inversely associated with A1C at both baseline and at 6-month follow-up. However, the association between anxious temperament and A1C at follow-up was mostly accounted for by the association between anxious temperament and baseline A1C and not by the uptake of self-management behaviors after diagnosis. Higher levels of anxious temperament were also associated with an increased likelihood of having been diagnosed with a prediabetic condition but were associated with poorer quality of life at both time points. CONCLUSION: Anxious temperament appears to be a double-edged sword that may facilitate early detection but not subsequent behavioral or emotional adjustment to T2DM.

Prediction of the onset of disturbed eating behavior in adolescent girls with type 1 diabetes.

OBJECTIVE: The purpose of this study was to identify predictors of the onset of disturbed eating behavior (DEB) in adolescent girls with type 1 diabetes. RESEARCH DESIGN AND METHODS: In this prospective study, participants completed the Children's Eating Disorder Examination interview and self-report measures at baseline and at four follow-up assessments over 5 years. Participants were 126 girls with type 1 diabetes, aged 9-13 years at baseline. Of the 101 girls who did not have DEB at baseline, 45 developed DEB during the follow-up period; the 38 for whom data were available for the assessment before onset of DEB were compared with 38 age-matched girls who did not develop DEB. DEB was defined as dieting for weight control, binge eating, self-induced vomiting, or the use of diuretics, laxatives, insulin omission, or intense exercise for weight control. RESULTS: Logistic regression indicated that a model including BMI percentile, weight and shape concern, global and physical appearance-based self-worth, and depression was significantly associated with DEB onset (chi(2) = 46.0, 5 d.f., P < 0.0001) and accounted for 48.2% of the variance. CONCLUSIONS: Even though scores on the measures were within the published normal range, the onset of DEB was predicted by higher depression and weight and shape concerns and lower global and physical appearance-based self-worth as well as higher BMI percentile 1-2 years earlier compared with those not developing DEB. Early interventions focused on helping girls with diabetes develop positive feelings about themselves, their weight and shape, and their physical appearance may have protective value.

A couples intervention for patients facing advanced cancer and their spouse caregivers: outcomes of a pilot study.

OBJECTIVE: The primary objective of this study was to evaluate the effectiveness of a couples intervention in improving marital functioning in advanced cancer patients and their spouse caregivers. A secondary objective was to determine its impact on other symptoms of psychosocial distress and its feasibility and acceptability as a clinical intervention. METHODS: Using a one-arm pre- and post-intervention prospective design, 16 couples were provided 8 weekly sessions of Emotionally Focused Couple Therapy, modified and manualized for the cancer population. Subjects' marital functioning (Revised Dyadic Adjustment Scale [RDAS]), symptoms of depression (Beck Depression Inventory-II [BDI-II]), and hopelessness (Beck Hopelessness Scale) were assessed through self-report at T0 (baseline), T1 (after four sessions), T2 (after eight sessions), and T3 (3 months post-intervention follow-up). RESULTS: RDAS scores improved from T0 to T2, with 87.5% of the couples showing some improvement (0.5-5 points) or significant improvement (>5 points) in marital functioning and 68.8% scoring in the non-distressed range (>or=48 RDAS). At T3, 60% of the couples (n=15) continued to score in the non-distressed range on the RDAS. BDI-II scores were significantly higher for patients than for caregivers. There was a significant reduction in the mean BDI-II score from T0 to T3 in all subjects (n=30). This reduction was more significant for the patients (n=15). CONCLUSIONS: Providing support to couples at this challenging time may result in improved marital functioning and an opportunity for relational growth during end-stage cancer. This study serves as the first step in the development of an empirically validated intervention for couples.

Eating disturbances in a school population of preteen girls: assessment and screening.

OBJECTIVE: To assess the utility of the Children's Eating Attitudes Test (cEAT) questionnaire in screening for interview-ascertained eating disturbances. METHOD: A total of 409 girls, 9-13 years of age, completed a cEDE interview and cEAT questionnaire. RESULTS: 14.7% of girls reported eating disturbances in the past month on the cEDE. Mean cEDE score was 0.3 +/- 0.6 and mean cEAT score was 5.9 +/- 5.9. The cEAT demonstrated low sensitivity but high specificity at a cutoff score of 20, and poor positive predictive value when lower cutoff scores were used. CONCLUSION: Eating disturbances were common but mild in this preteen group. The cEAT was not an efficient screening tool for interview-ascertained mild eating disturbances in preteen girls.

Stress response syndromes in women undergoing mammography: a comparison of women with and without a history of breast cancer.

OBJECTIVE: The purpose of this study was to assess the incidence, severity, and correlates of acute stress responses in women undergoing diagnostic mammographic surveillance and to explore the moderating impact of physician support on these symptoms. METHODS: Sixty-six female breast cancer outpatients (at least 12 months after diagnosis and primary treatment) and 69 healthy women undergoing mammographic surveillance completed measures of: acute stress response, somatization, trauma history, psychiatric history, social support, and physician satisfaction. RESULTS: Previous cancer, pre-mammography breast complaints, lower income, previous psychiatric medication use, greater instrumental support, greater somatization, greater perceived physician disengagement, and less perceived physician support were all associated with increased stress responses. Among women with a previous cancer diagnosis, those with greater distress reported higher levels of physician support. In contrast, among those without a previous cancer diagnosis, those with greater perceived physician support reported less distress. CONCLUSIONS: These findings suggest that cancer-related cues, such as follow-up surveillance, may trigger a sensitizing response in women with a previous cancer diagnosis. The association of distress with physician support may arise from the responsiveness of physicians to identified distress, from increased help-seeking behavior by those who are distressed, or both. The benefit of support provided by health care professionals to those at risk of developing stress response syndromes deserves further study.

Symptomatic distress, hopelessness, and the desire for hastened death in hospitalized cancer patients.

OBJECTIVE: This study evaluated the desire for hastened death (DHD) in cancer patients at varying stages of disease to determine its frequency and relationship to physical and psychological distress. METHODS: Two hundred twenty-four inpatients at Princess Margaret Hospital completed questionnaires assessing pain, physical symptoms, depression, hopelessness, and DHD. RESULTS: There was significant physical and psychological distress in this sample with a mean of nine physical symptoms reported by each subject. Seven percent reported moderate DHD on the Schedule of Attitudes Towards Hastened Death (SAHD) and 2% reported high DHD. Hopelessness and stage of disease were the only significant independent predictors of DHD and their interaction was associated with increased DHD. Hopelessness and, less so, depression both mediated the pathways between illness-related factors and DHD. CONCLUSIONS: Findings suggest that DHD is significantly related to hopelessness and advancing disease. Assessment of this phenomenon prior to the end of life may provide opportunities for intervention.

Psychosocial adjustment in head and neck cancer: the impact of disfigurement, gender and social support.

BACKGROUND: The purpose of this study was to examine the psychosocial impact of disfigurement, gender, and social support after surgical treatment of head and neck cancer. METHOD: Eighty-two ambulatory head and neck cancer patients, 6 months or more after treatment and free of active disease were assessed. Ratings of disfigurement were obtained using a valid and reliable 9-point scale developed for the study. Standardized measures of social support, depressive symptoms, well-being, and life happiness were used. RESULTS: The sample as a whole displayed high levels of life happiness, low levels of depression, and positive feelings of well-being. Women demonstrated higher levels of depression and lower life happiness; subjects with greater disfigurement were more depressed. Social support seemed to buffer the impact of greater levels of disfigurement on well-being for women but not for men. CONCLUSION: These results suggest that women with head and neck cancer who experience low social support and face disfiguring treatment are at greatest risk for psychosocial dysfunction.

Stress response syndromes and cancer: conceptual and assessment issues.

Stress response syndromes have begun to receive research attention in cancer, including melanoma, Hodgkin's disease, breast cancer, and mixed-diagnosis samples. This paper focuses on conceptual and assessment issues in the application of the trauma model to adaptation to cancer. Among the central considerations: differentiating cancer from other traumatic events, the utility of conceptualizing stress responses along a continuum in this population, diagnostic issues, and preliminary recommendations for therapeutic interventions.