Self-reported physical and psychological symptom burden in adults with cystic fibrosis

Symptom burden is a key component of health-related quality of life in patients with cystic fibrosis (CF). To examine symptom prevalence and characteristics of adults with CF, we administered the Memorial Symptom Assessment Scale (MSAS), a previously validated measure of symptom burden, to CF patients enrolled in the Project on Adult Care in CF. The mean age of the 303 respondents (response rate 91%) was 32.8 years (range, 19-64); 58% were female, and their mean baseline pulmonary function (FEV(1) % predicted) was 69% (SD 28%). The median number of symptoms reported was 10, and there was no difference in the number of symptoms reported based on age, gender, or FEV(1). The most prevalent symptoms were cough (94%), shortness of breath (77%), and lack of energy (77%). Lack of energy and irritability caused the highest level of distress. MSAS symptom subscales were only moderately correlated with symptom status domains from existing CF health-related quality of life measures. Factor analysis led to the development of three distinct MSAS CF-symptom subscales, each with high internal validity. These findings show that adults with CF have a high symptom burden, particularly with respiratory and psychological symptoms, and that the new MSAS CF-specific subscales are a reliable measure of symptom distress in the CF population.     

Association between symptom distress and survival in outpatients seen in a palliative care cancer center

Clinical observation and preliminary reports suggest that higher scores for symptoms such as pain may be associated with shorter survival. We undertook a survival analysis to determine whether symptom expression in outpatients with complex cancer is related to the duration of their survival. Participants were 225 outpatients with cancer evaluated in our comprehensive cancer center for pain management or palliative care over a 10-week period ending June 2000. In addition to age and other clinical and demographic information, the patients completed the Anderson Symptom Assessment System (ASAS), which assesses pain, fatigue, nausea, depression, anxiety, drowsiness, shortness of breath (dyspnea), appetite, sleep, and feeling of well-being on a 0–10 scale. Univariate analyses showed that higher symptoms of dyspnea, drowsiness, problems with appetite, and nausea were significantly associated with shorter survival whereas pain, depression and other ASAS items were not. In multivariate analyses, only higher levels of dyspnea and drowsiness showed a significant association (P = 0.01 and P = 0.02, respectively) with shorter survival. Knowledge about these symptoms may be important in formulating adaptive randomization techniques for clinical trials and for research concerning estimates of survival.     

Investigating physical symptom burden and personal goal interference in early-stage breast cancer patients

Purpose

Physical symptoms associated with breast cancer and its treatment can substantially interfere with functional outcomes and quality of life. The present study seeks to delineate the relationship between physical symptom burden and cancer-related goal interference in early-stage breast cancer patients.

Methods

Self-report questionnaires were administered to 43 eligible female patients at four time-points in the 6 months following surgery for early-stage breast cancer. Physical symptoms, cancer-related goal interference, and psychological distress were assessed at each time-point. K-means cluster analysis and independent sample t tests evaluated the relationships of interest.

Results

Women with a higher physical symptom burden experienced significantly higher goal interference and psychological distress than those with a lower burden at multiple time-points following surgery.

Conclusions

This study provides preliminary evidence that physical symptom burden can interfere with important goal pursuit in early-stage breast cancer patients. Breast cancer survivors with ongoing challenging symptoms may require targeted psychosocial support to cope with possible goal interference and associated distress.     

Palliative and oncologic co-management: symptom management for outpatients with cancer

Purpose

Although outpatient palliative care clinics are increasingly common, evidence for their efficacy remains limited.

Methods

We conducted an observational study at the palliative care clinic of an academic cancer center to assess the association between palliative care co-management and symptoms and quality of life. Two hundred sixty-six adult outpatients were seen for a minimum of two palliative care visits within 120 days. A subset of 142 patients was seen for a third visit within 240 days. Patients completed a questionnaire containing validated symptom, quality of life, and spiritual wellbeing questions at each visit.

Results

The first follow-up visit was on average 41 days after the initial visit; the second follow-up visit was on average 81 days after the initial visit. Between the initial and first follow-up visits, there was significant improvement in pain (p?<?0.001), fatigue (p?<?0.001), depression (p?<?0.001), anxiety (p?<?0.001), quality of life (p?=?0.002), and spiritual wellbeing (p?<?0.001), but not nausea (p?=?0.14). For the subset of patients seen for a second follow-up visit, the improvements in pain, fatigue, depression, anxiety, quality of life, and spiritual wellbeing persisted (p?≤?0.005 for trend of each symptom). Patients had similar improvement regardless of their gender, age, ethnicity, disease stage, disease progression, and concurrent oncologic treatments.

Conclusions

Palliative care was associated with significant improvement in nearly all the symptoms evaluated. A sustained change in symptoms was observed in the subset of patients seen for a second follow-up visit. Members of all subgroups improved.     

Miles over mind: Transnational death and its association with psychological distress among undocumented Mexican immigrants

Abstract

Objective: This study examined the association between transnational death and psychological distress among undocumented Mexican immigrants. The Minority Stress Model and a disenfranchised grief perspective were used as frameworks for this study.

Method: Respondent driven sampling (RDS) was used to collect data from clinical interviews with 248 undocumented Mexican immigrants residing near the US–Mexico border.

Results: After controlling for relevant covariates, experiencing transnational death was a significant predictor of clinically significant distress in this at-risk population.

Conclusions: Our findings underscore the need to contextualize transnational death among undocumented immigrants from a perspective of disenfranchised grief that requires the development of contextually and culturally sensitive interventions aimed at addressing the high prevalence of transnational death and its associated distress in this marginalized population.     

Patients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: trends and measurement issues

Next of kin (NOK) play an integral role in fostering optimal quality of life in symptomatic patients who are coping with cancer in the home setting. Often when patients in advanced stages of cancer are no longer able to meaningfully communicate their illness and symptom needs, healthcare professionals turn to NOK to provide sound estimates of patients' symptom experiences. This overview is based on 37 research studies written between 1987 and 2002 and updates an earlier overview of 13 studies on patient-NOK response comparability. The purpose is to, first, promote a better comprehension of methodologies and statistical techniques commonly employed to measure patterns of response comparability (or levels of agreement) between patient self-reports and NOK estimates on patient quality-of-life experiences of physical or symptom and emotional or psychological well-being. The second aim is to identify conditions where NOK may pose as reasonably accurate judges of patients' health-related quality of life, particularly symptom experiences arising from various diagnoses, including cancer. Third, subsequent to identifying the gaps in current research knowledge and limitations in study designs, recommendations for statistical and methodological techniques are outlined.     

Frequency of depression among oncology outpatients and association with other symptoms

Purpose

Depression occurs among an estimated 15% of cancer patients (range, 1–77.5%). Our main objective was to identify the frequency of reported depression by using the Brief Edinburgh Depression Scale (BEDS) among cancer outpatients. Our secondary objective was to identify associated symptoms of cancer using the Edmonton Symptom Assessment System (ESAS) and to evaluate the screening performance of depression between ESAS and BEDS.

Methods

In this multicenter prospective study conducted, we used the ESAS to collect information on nine symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, shortness of breath, lack of appetite, and feeling of well-being (each rated from 0 to 10). The BEDS was used to assess for “probable depression” (score >6). Data were analyzed using a parametric and nonparametric test.

Results

A total of 146 patients completed the study. The prevalence of probable depression was 43/146 (29%). Probable depression was associated with increased fatigue (p?=?0.008), depression (p?p?p?=?0.01), and decreased feeling of well-being (p?Conclusion We found significant associations between probable depression as determined with the BEDS and five symptoms as detected with the ESAS. The vast majority of patients with probable depression were not receiving pharmacological treatment. Depression should be suspected in patients with higher symptom distress as for any one of these 5 ESAS items.     

The persistence of symptom burden: symptom experience and quality of life of cancer patients across one year

Purpose

The purpose of this longitudinal study was to track the symptom experience in a sample of cancer patients, determine the persistence of cancer symptoms and symptom burden, and examine the relationship between symptoms and QOL over time.

Methods

Five hundred forty-two patients provided longitudinal data, completing surveys over a 12-month period. Patients had breast, colorectal, gynecologic, lung, or prostate cancer with stage 1, 2, or 3 disease. Surveys included the Memorial Symptom Assessment Scale and the Functional Assessment of Cancer Therapy-General Scale and were administered every 3 months. Demographic and clinical information and comorbidities were collected from the tumor registry.

Results

The number and type of symptoms experienced by patients varied by cancer type, but about 90 % of patients reported one or more symptoms—with prostate cancer patients reporting fewer symptoms and colorectal patients, more symptoms. Prostate patients also had the lowest symptom burden at every time point. Overall, symptom burden decreased over time, as did the Physical subscale for the MSAS. Quality of life was stable over time, except for physical well-being, which improved. Quality of life was negatively correlated with symptom burden at every time point.

Conclusions

The differences in symptom experience by cancer type suggest that assessment and management of symptoms must be individually tailored or at least adjusted by cancer type. While symptom burden decreased over time, residual symptom burden was still noteworthy. As quality of life was persistently negatively correlated with symptom burden, the results suggest the need for comprehensive symptom assessment and management.     

妇科恶性肿瘤围手术期症状负担及其研究工具的研究进展

恶性肿瘤是严重威胁妇女健康和生命的主要疾病之一,主要包括各种类型的子宫及其附件肿瘤。目前,手术仍是治疗妇科恶性肿瘤患者尤其是早期患者的第一选择[1],围手术期间肿瘤本身以及治疗常给患者带来严重的症状负担,对妇女身体健康和生命质量造成巨大威胁。快速康复外科(enhanced recovery after surgery,ERAS)是采用有循证医学证据证明有效的围术期处理措施,减轻手术创伤的应激反应,从而达到加速康复的目的[2]。快速精准进行围手术期症状识别与管理,制订科学有效的治疗与护理措施,能使广大妇科恶性肿瘤患者获益。症状的识别与管理离不开准确可靠的评估工具。近年来国外对妇科恶性肿瘤症状评估工具的研究较多,而我国相关研究尚处于起步阶段。     

The relationship of cancer symptom clusters to depressive affect in the initial phase of palliative radiation

Research on comorbidity across cancer symptoms, including pain, fatigue, and depression, could suggest if crossover effects from symptom-specific interventions are plausible. Secondary analyses were conducted on a survey of 268 cancer patients with recurrent disease from a northeastern U.S. city who were initiating palliative radiation for bone pain. Moderator regression analyses predicted variation in depressive affect that could be attributed to symptom clusters. Patients self-reported difficulty controlling each physical symptom over the past month on a Likert scale and depressive symptoms on a validated depression measure (Center for Epidemiologic Studies-Depression [CES-D]) over the past week on a four-category scale. An index of depressive affect was based on items of negative and positive affect from the CES-D. In predicting depressive affect, synergistic interactions of pain with fever, fatigue, and weight loss suggest separate pathways involving pain. A similar interaction with fever occurs when nausea was tested in place of pain. Further, the interaction between pain and fatigue is similar in form to the interaction between difficulty breathing and fatigue (when sleep is not a problem). Follow-up to the latter interaction reveals: 1) additional moderation by hypertension and palliative radiation to the hip/pelvis; and 2) a similar cluster not involving hypertension when appetite problems and weight loss were tested in place of fatigue. The significance and form of these interactions are remarkably consistent. Similar sickness mechanisms could be generating: 1) pain and nausea during fever; 2) pain and fatigue during weight loss; and 3) pain and breathing difficulty when fatigue is pronounced. Crossover effects from symptom-specific interventions appear promising.     

Depression burden, psychological adjustment, and quality of life in women with breast cancer: patterns over time

The purpose of this study was to examine how level of depression burden influences women's psychological adjustment and quality of life over time and how depression burden interacted with a community-based oncology support program to influence psychological adjustment and life quality. Participants were 169 women who completed a side effects checklist at three data collection points. Women were divided into two groups based on their depression burden scores: 123 women reporting no burden, and 46 women reporting high depression burden. For psychological adjustment, there were significant interaction effects for intervention by time and for intervention by depression burden by time and significant main effects for depression burden. For life quality, there was a significant interaction effect for intervention by time and a significant main effect for depression burden. The findings document the negative impact of depression burden on psychological adjustment and life quality. Oncology support interventions can be effective in reducing this negative impact.     

The association of presurgery psychological symptoms with postsurgery pain among cancer patients receiving implantable devices for pain management

Purpose

Psychological symptoms are a common part of the cancer pain experience, yet little is known about how these factors relate to implantable device outcomes in patients with cancer pain. The purpose of this study was to examine how psychological symptoms relate to implantable device outcomes in cancer pain management.

Methods

We retrospectively examined the medical records of 79 cancer patients, collecting information on psychological symptoms and pain, as assessed on the Edmonton Symptom Assessment System. Data were collected prior to and at three points following the implantation of either a spinal cord stimulator or an intrathecal pump.

Results

Pain was correlated with both anxiety, r?=?0.39 (n?=?74, p?<?0.01), and depression, r?=?0.38, (n?=?75, p?<?0.01), at the presurgery baseline. Results of linear mixed model (LMM) analysis indicated that neither baseline anxiety nor baseline depression main effects were significantly associated with pain at postimplant assessments, when adjusting for baseline pain, demographics, and clinical factors. However, the group-by-time interaction was significant for anxiety (beta?=?0.223, p value?=?0.037). The trajectory of pain scores over time differed by baseline anxiety scores, with pain scores increasing over time at a higher rate for those with a high baseline anxiety score, compared to those with low baseline anxiety scores.

Conclusion

Presurgery psychological symptoms should be considered, along with other medical, psychosocial, and individual characteristics in multidisciplinary treatment planning. Multidisciplinary care which includes aspects of mood management or supportive psychotherapy would likely be beneficial to cancer patients presenting with high psychological symptoms.     

Predictors of response to palliative care intervention for chronic nausea in advanced cancer outpatients

Purpose

Nausea is a frequent and distressing symptom in advanced cancer patients. The objective of this retrospective study was to determine predictors of response to palliative care consultation for chronic nausea in advanced cancer outpatients.

Methods

Eligible patients included were outpatient supportive care center seen consecutively for an initial consultation and who had one follow-up visit within 30 days of the initial consultation. We reviewed the medical records of 1,273 consecutive patients, and 444 (35 %) were found to meet the eligibility criteria. All patients were assessed using the Edmonton Symptom Assessment Scale (ESAS). Nausea response was defined as an improvement of at least 30 % between the initial visit and the first follow-up. We used logistic regression models to assess the possible predictors of improvement in nausea.

Results

Overall, 112 of 444 patients (25 %) experienced moderate/severe chronic nausea (ESAS item score ≥4/10). Higher baseline nausea intensity was significantly related to constipation (r?=?0.158; p?=?0.046) and all the symptoms assessed by the ESAS (p?<?0.001). Sixty-eight of the 112 (61 %) patients with moderate/severe nausea at baseline showed a significant improvement at the follow-up visit (p?<?0.001). The main predictors for nausea response were improvement of fatigue (p?=?0.005) and increased appetite (p?=?0.003).

Conclusions

Baseline nausea was associated with all the ESAS symptom and improvement of fatigue and lack of appetite predicted a lower frequency of nausea at follow-up. More research is necessary to better understand the association between nausea severity and other symptoms and to predict which interventions will yield the best outcomes depending on the mix and severity of symptoms.     

Interval between palliative care referral and death among patients treated at a comprehensive cancer center

In recent years, patients with advanced cancer are referred more frequently to palliative care programs. However, the referrals usually occur relatively late for the management of severe physical and psychological distress. The purpose of this retrospective study was to investigate the interval between palliative care referral and death in patients with advanced cancer. We reviewed charts of 240 consecutive patients with advanced cancer referred to the palliative care program at M.D. Anderson Cancer Center between September and December 2003. Demographics, as well as dates of cancer diagnosis, advanced disease diagnosis, palliative care referral, and death were determined. The median age was 61 years old, 173 were male, 304 patients had solid tumors, and 26 had hematologic malignancies. The median time intervals between the diagnosis of the primary cancer and death, diagnosis of advanced disease and death, advanced disease and palliative care referral, and palliative care referral and death were 33.0 months (95% confidence interval [CI]: 25.8-41.9), 9.4 months (95% CI: 7.9-11.1), 5.6 months (95% CI: 4.3-7.7), and 1.9 months (95% CI: 1.6-2.2), respectively. The patients' median time interval from advanced cancer diagnosis to death and from palliative care referral to death was shorter in patients with hematologic malignancies than in those with sold tumors (p = 0.018 and p < 0.001, respectively). Median time interval between palliative care referral and death was longer for patients less than 65 year old than those 65 years old or more (p = 0.03). Our results should help palliative care and oncology programs at comprehensive cancer centers plan how to develop joint programs for patient care.