Henrique A. Parsons

Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks

PurposeCommonly used terms such as “supportive care,” “best supportive care,” “palliative care,” and “hospice care” were rarely and inconsistently defined in the palliative oncology literature. We conducted a systematic review of the literature to further identify concepts and definitions for these terms.MethodsWe searched MEDLINE, PsycInfo, EMBASE, and CINAHL for published peer-reviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms. Two researchers independently reviewed each citation for inclusion and then extracted the concepts/definitions when available. Dictionaries/textbooks were also searched.ResultsNine of 32 “SC/BSC,” 25 of 182 “PC,” and 12 of 42 “HC” articles focused on providing a conceptual framework/definition. Common concepts for all three terms were symptom control and quality-of-life for patients with life-limiting illness. “SC” focused more on patients on active treatment compared to other categories (9/9 vs. 8/37) and less often involved interdisciplinary care (4/9 vs. 31/37). In contrast, “HC” focused more on volunteers (6/12 vs. 6/34), bereavement care (9/12 vs. 7/34), and community care (9/12 vs. 6/34). Both “PC” and “SC/BSC” were applicable earlier in the disease trajectory (16/34 vs. 0/9). We found 13, 24, and 17 different definitions for “SC/BSC,” “PC,” and “HC,” respectively. “SC/BSC” was the most variably defined, ranging from symptom management during cancer therapy to survivorship care. Dictionaries/textbooks showed similar findings.ConclusionWe identified defining concepts for “SC/BSC,” “PC,” and “HC” and developed a preliminary conceptual framework unifying these terms along the continuum of care to help build consensus toward standardized definitions.

Characteristics and correlates of dyspnea in patients with advanced cancer

BACKGROUND Dyspnea is a very distressing symptom present in the vast majority of patients with advanced cancer. There are limited data on the characteristics and correlates of dyspnea in this population. The purpose of this study was to characterize dyspnea, explore the differences between breakthrough and continuous presentations, and to determine factors associated with its intensity. METHODS Prospective observational study among 70 patients with dyspnea referred to a palliative care service. Dyspnea was assessed using the Edmonton Symptom Assessment System (ESAS, 0-10) and the Oxygen Cost Diagram (OCD). Oximetry, pulmonary function tests, Hospital Anxiety and Depression Scale (HADS), and a detailed systematic evaluation of daily characteristics of dyspnea were performed. Other symptoms were recorded using the ESAS. RESULTS Of 30 patients, 70 (43%) were female, median age was 58 (range, 28-87), and the most frequent cancer diagnosis were lung (31/70; 44%) and urologic (15/70; 21%). Constant dyspnea occurred in 27 of 70 (39%) patients, with 14 of 70 (20%) presenting breakthrough episodes. Breakthrough-only dyspnea occurred in 43 of 70 (61%). The majority of patients with breakthrough episodes (39/57; 68%) presented fewer than 5 episodes daily, most frequently lasting for less than 10 minutes (50/57; 88%). In univariate analyses ESAS dyspnea was associated with fatigue (p < 0.0001), sleep (p = 0.002), anxiety (p = 0.006), depression (p = 0.01), sensation of well-being (p = 0.03), and with OCD (p = 0.001). In multivariate analysis, ESAS dyspnea was associated with fatigue (p = 0.001), forced expiratory volume (p = 0.004), pain (p = 0.01), and depression (p = 0.03). Dyspnea intensity significantly interfered with activities (general activity, p = 0.01, mood, p = 0.02, walking ability, p = 0.04, normal work p = 0.04, and enjoyment of life, p = 0.01). CONCLUSION Dyspnea in patients with advanced cancer more frequently had breakthrough characteristics, was of very short duration, and interfered with daily activities.

Placebo and nocebo effects in randomized double-blind clinical trials of agents for the therapy for fatigue in patients with advanced cancer.

A significant response to placebo in randomized controlled trials of treatments for cancer‐related fatigue (CRF) had been reported. A retrospective study was conducted to determine the frequency and predictors of response to placebo effect and nocebo effects in patients with CRF treated in those trials.

Alcoholism Screening in Patients with Advanced Cancer: Impact on Symptom Burden and Opioid Use

PURPOSE Alcoholism is a devastating disease that can cause patient and family suffering and is frequently underdiagnosed. Preliminary studies suggest that it is associated with increased symptom expression and opioid dose escalation. The CAGE questionnaire is a widely used tool for alcoholism screening. The purpose of this study was to determine the frequency and characteristics of patients who screen positive for alcoholism in a palliative care outpatient clinic (PCOC). METHODS We reviewed 665 consecutive charts of patients referred to the PCOC and collected data regarding age, gender, and type of cancer. For the first 100 consecutive CAGE positive (CAGE+) and 100 consecutive CAGE negative (CAGE-) patients, time from advanced cancer diagnosis (AC) to PCOC was calculated, and symptoms (Edmonton Symptom Assessment Scale, ESAS) and Morphine Equivalent Daily Dose (MEDD) were collected. RESULTS CAGE was available for 598 of 665 (90%) patients. Of 598 patients, 100 (17%) were CAGE+. CAGE+ patients were younger (58 versus 60 years, p < 0.05), predominantly male (68% versus 47%, p < 0.0001), and with head/neck malignancies (24% versus 9%, p < 0.05). CAGE+ patients were referred earlier (5 +/- 27 months after AC, p < 0.0001). At baseline, pain, sleep, dyspnea, well-being, and total symptom distress were significantly worse among CAGE+ patients. Both groups showed similar improvement in symptoms. CAGE+ patients were more frequently on opioids upon referral (47/100 versus 29/100, p < 0.05) and follow-up (27/65 versus 16/68, p < 0.05). At follow-up, opioid doses did not show significant changes. CONCLUSION Seventeen percent of the patients were CAGE+. These patients were referred earlier to palliative care, had more symptom expression, and were more frequently on opioids. The palliative care team successfully improved symptom control in both groups without opioid dose escalation.

The frequency and correlates of spiritual distress among patients with advanced cancer admitted to an acute palliative care unit

Limited research is available on the frequency of spiritual distress and its relationship with physical and emotional distress. We reviewed patients admitted to our acute palliative care unit (APCU) and determined the association between patient characteristics, symptom severity using the Edmonton Symptom Assessment scale (ESAS), and spiritual distress as reported by a chaplain on initial visit. In all, 50 (44%) of 113 patients had spiritual distress. In univariate analysis, patients with spiritual distress were more likely to be younger (odds ratio [OR] = 0.96, P = .004), to have pain (OR = 1.2, P = .010) and depression (OR = 1.24, P = .018) compared to those without spiritual distress. Spiritual distress was associated with age (OR = 0.96, P = .012) and depression (OR = 1.27, P = .020) in multivariate analysis. Our findings support regular spiritual assessment as part of the interdisciplinary approach to optimize symptom control.

Undocumented alcoholism and its correlation with tobacco and illegal drug use in advanced cancer patients.

The objectives of this retrospective study were to determine the frequency of undiagnosed alcoholism among patients with advanced cancer who were referred to palliative care and to explore its correlation with alcoholism, tobacco abuse, and use of illegal drugs.

The relationship between body composition and response to neoadjuvant chemotherapy in women with operable breast cancer

INTRODUCTION Overweight women diagnosed with breast cancer have greater recurrence and mortality risks. Recent studies in advanced cancer showed that the combination of sarcopenia and an overweight or obese body mass index (BMI) is associated with poor clinical outcomes. OBJECTIVES To compare pathological complete response (pCR) cases with controls and evaluate associations among a pCR, survival outcome, and sarcopenia as well as the combination of both sarcopenia and a BMI ≥25 kg/m(2). METHODS Sixty-seven breast cancer patients with a pCR to neoadjuvant chemotherapy (NC) were matched with controls who did not have a pCR to NC. Patients were matched by age, Blacks nuclear grading system, clinical cancer stage, and estrogen receptor and progesterone receptor status. Body composition was analyzed using computed tomography images taken prior to NC. RESULTS BMI was associated with pCR. Among normal weight patients, the pCR rate was higher in sarcopenic patients and the progression-free survival (PFS) interval was significantly longer than in overweight or obese BMI patients. The death hazard was 2% higher for each unit higher skeletal muscle index and 0.6% higher for each unit higher visceral adipose tissue. CONCLUSIONS Overweight patients treated with NC had a lower pCR rate and shorter PFS time. Among patients with a normal BMI, the pCR rate was better in sarcopenic patients. More research is required to evaluate the negative impact of sarcopenic obesity on prognosis and the contributors to better response rates in operable, normal weight breast cancer patients with sarcopenia.

Association Between Self-Reported Sleep Disturbance and Other Symptoms in Patients with Advanced Cancer

CONTEXT Sleep disturbance (SD) is a significant source of distress for patients with cancer. Studies of patients with advanced cancer receiving palliative care to identify symptoms associated with the severity of SD are limited. OBJECTIVES In this study, we sought to identify the symptoms measured by the Edmonton Symptom Assessment Scale (ESAS) that are associated with SD, as measured by the Pittsburgh Sleep Quality Index (PSQI). Secondary aims of the study were to determine the association between occurrences of SD with occurrences of other symptoms and screening performance of the ESAS-Sleep item against the PSQI. METHODS We reviewed the completed ESAS and PSQI assessments of 101 patients with advanced cancer who were receiving palliative care and had been admitted to prospective clinical trials previously initiated by us. Patients with a PSQI score of ≥ 5 were considered to have an SD. The frequency and severity of the ESAS symptoms items, their correlation with each other, the PSQI score, and the screening performance of the ESAS-Sleep item were calculated. RESULTS The median age of patients was 60 years. Most were white non-Hispanic (73%), had lung or breast cancer (41%), and were diagnosed with SD (85%). The PSQI score was correlated with the ESAS items of pain (r=0.27, P=0.006), dyspnea (r=0.25, P<0.001), well-being (r=0.35, P<0.0001), and sleep (r=0.44, P<0.0001). Compared with patients without SD, those with SD were more likely to report pain (P=0.0132), depression (P=0.019), anxiety (P=0.01), and a poorer sense of well-being (P=0.035). An ESAS-Sleep item cutoff score of ≥ 3 (of 10) resulted in a sensitivity of 74% and a specificity of 73%. CONCLUSION SD is associated with increased frequency of pain, depression, anxiety, and a worse sense of well-being. These four symptoms should be assessed in all patients with advanced cancer with a complaint of SD. The ideal cutoff point of the ESAS-Sleep item for screening for SD is a score of ≥ 3. More research is needed to better characterize this frequent and distressing syndrome.

Body Composition, Symptoms, and Survival in Advanced Cancer Patients Referred to a Phase I Service

Background Body weight and body composition are relevant to the outcomes of cancer and antineoplastic therapy. However, their role in Phase I clinical trial patients is unknown. Methods We reviewed symptom burden, body composition, and survival in 104 patients with advanced cancer referred to a Phase I oncology service. Symptom burden was analyzed using the MD Anderson Symptom Assessment Inventory(MDASI); body composition was evaluated utilizing computerized tomography(CT) images. A body mass index (BMI)≥25 kg/m2 was considered overweight. Sarcopenia, severe muscle depletion, was assessed using CT-based criteria. Results Most patients were overweight (n = 65, 63%); 53 patients were sarcopenic (51%), including 79% of patients with a BMI<25 kg/m2 and 34% of those with BMI≥25 kg/m2. Sarcopenic patients were older and less frequently African-American. Symptom burden did not differ among patients classified according to BMI and presence of sarcopenia. Median (95% confidence interval) survival (days) varied according to body composition: 215 (71–358) (BMI<25 kg/m2; sarcopenic), 271 (99–443) (BMI<25 kg/m2; non-sarcopenic), 484 (286–681) (BMI≥25 kg/m2; sarcopenic); 501 d (309–693) (BMI≥25 kg/m2; non-sarcopenic). Higher muscle index and gastrointestinal cancer diagnosis predicted longer survival in multivariate analysis after controlling for age, gender, performance status, and fat index. Conclusions Patients referred to a Phase I clinic had a high frequency of sarcopenia and a BMI≥25 kg/m2, independent of symptom burden. Body composition variables were predictive of clinically relevant survival differences, which is potentially important in developing Phase I studies.

Spirituality, Religiosity, and Spiritual Pain Among Caregivers of Patients With Advanced Cancer

Background: Caregivers of patients with advanced cancer often face physical, social, and emotional distress as well as spiritual pain. Limited research has focused on the spiritual aspects of caregivers’ suffering in the palliative care setting. Methods: We interviewed 43 caregivers of patients with advanced cancer in our palliative care outpatient clinic. We determined demographic characteristics, religious affiliation, and relationship to the patient. Levels of spirituality, religiosity, and spiritual pain were self-reported using numeric rating scales (0 = lowest; 10 = highest). The participants completed various validated questionnaires to assess sleep disturbances, psychosocial distress, coping skills, and quality of life (QOL). Results: The median age was 52 years(range, 21-83); 29 (67%) were women, 34 (78%) were white, 7 (17%) were African American, and 2 (5%) were Hispanic; 39 (91%) were Christian, 1 (2%) was Jewish, and 1 (2%) was agnostic; 37(86%) were married; 18 (42%) were working full time; and 25(58%) were spouses. All considered themselves spiritual, and 98% considered themselves religious, with median scores of 8 (interquartile range, 6-10) and 8 (interquartile range, 4-9), respectively. All the caregivers reported that spirituality and religiosity helped them cope with their loved one’s illness, and many reported that spirituality and religiosity had a positive impact on their loved one’s physical (58%) and emotional (76%) symptoms. Spiritual pain was reported by 23 (58%), with a median score of 5 (interquartile range, 2-8). Caregivers with spiritual pain had higher levels of anxiety (median 10 vs 4; P = .002), depression (6 vs 2; P = .006), and denial (3 vs 2; P = .01); more behavioral disengagement (3 vs 2; P = 0.011) more dysfunctional coping strategies (19 vs 16; P < .001) and worse QOL (70 vs 51; P < .001) than those who did not have spiritual pain. Conclusions: The majority of caregivers of patients with advanced cancer considered themselves spiritual and religious. Despite this, there is high prevalence of spiritual pain in this population. Caregivers with spiritual pain experienced worse psychological distress and worse QOL. These findings support the importance of spiritual assessment of and spiritual support for caregivers in this setting.