The impact of financial toxicity in gastrointestinal cancer patients.

BACKGROUND: Biopsychosocial distress screening is a critical component of comprehensive cancer care. Financial issues are a common source of distress in this patient population. This study uses a biopsychosocial distress screening tool to determine the factors associated with financial toxicity and the impact of these stressors on gastrointestinal cancer patients. METHODS: A 48-question, proprietary distress screening tool was administered to patients with gastrointestinal malignancies from 2009 to 2015. This validated, electronically-administered tool is given to all new patients. Responses were recorded on a 5-point Likert scale from 1 (not a problem) to 5 (very severe problem), with responses rated at ≥3 indicative of distress. Univariate and multivariate logistic regressions were used to analyze the data. RESULTS: Most of the 1,027 patients had colorectal (50%) or hepatobiliary (31%) malignancies. Additionally, 34% of all patients expressed a high level of financial toxicity. Age greater than 65 (odds ratio: 0.63, 95% confidence interval: 0.47-0.86, P < .01), college education (odds ratio: 0.53, 95% confidence interval: 0.38-0.73, P < .0001), being partnered (odds ratio: 0.61, 95% confidence interval: 0.44-0.84, P < .01), and annual income greater than $40,000 (odds ratio: 0.27, 95% confidence interval: 0.19-0.38, P < .0001) were all protective against financial toxicity on univariate analysis. Also, heavy tobacco use was associated significantly with increased distress on univariate analysis (odds ratio: 2.79, 95% confidence interval: 1.38-5.78, P < .01). With the exception of partnered status (odds ratio: 1.18, 95% confidence interval: 0.76-1.85, P = .46), all these variables retained their significant association with financial toxicity in the multivariate model. CONCLUSION: Financial toxicity impacts a large number of cancer patients. Further study of at-risk populations may identify patients who would benefit from pre-emptive education and counseling interventions as part of their routine cancer care.

Influence of Early versus Late supplemental ParenteraL Nutrition on long-term quality of life in ICU patients after gastrointestinal oncological surgery (hELPLiNe): study protocol for a randomized controlled trial.

BACKGROUND: Nutrition plays a major role in intensive care unit (ICU) treatment, influencing ICU length of stay and patient's survival. If preferable enteral nutrition administration is not feasible, ESPEN and ASPEN guidelines recommend initiation of a supplemental parenteral route between the first and seventh day, but exact timing remains elusive. While rapid development in critical care enabled significant reduction in the mortality rate of ICU patients, this improvement also tripled the number of patients going to rehabilitation. Thus, it is quality of life after ICU that has become the subject of interest of clinicians and healthcare policy-makers. A growing body of evidence indicates that protein turnover in the early phase of critical illness may play a crucial role in the preservation of lean body mass. A negative protein balance may lead to muscle wasting that persists weeks and months after ICU stay, resulting in deterioration of physical functioning. Folliwing oncological gastrointestinal tract surgery, patients are threatened with negative protein turnover due to cancer and extensive surgical insult. METHODS: This is a multi-centre, single-blinded, randomised controlled trial. The study population includes patients admitted to ICU units after major oncological gastrointestinal surgery that require supplemental parenteral nutrition. After initiation of enteral nutrition, the intervention group receives remaining daily requirement via supplemental parenteral nutrition on the first day of ICU stay while the control group is not supplemented parenterally until the seventh day of ICU stay while enteral nutrition is gradually increased. Primary endpoint: long-term quality of life measured in the physical component score (PCS) of SF-36 questionnaire at 3 and 6 months after ICU admission. DISCUSSION: To our knowledge, this is the first trial to investigate the influence of early supplemental parenteral nutrition on long-term quality of life after major oncological gastrointestinal surgery. We assume that, particularly in this population of patients, early supplemental parenteral nutrition may increase the long-term quality of life. The study construction also allows establishment of patients' PCS SF-36 score prior to surgery and mean change in PCS SF-36 score during the recovery period, which is rarely seen in studies on critically ill patients. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03699371 registered on 12 October 2018.

An Exploratory Study on the Effects of Forest Therapy on Sleep Quality in Patients with Gastrointestinal Tract Cancers.

The improvement of sleep quality in patients with cancer has a positive therapeutic effect on them. However, there are no specific treatment guidelines for treating sleep disturbance in cancer patients. We investigated the effect of forest therapy on the quality of sleep in patients with cancer. This study was conducted on nine patients (one male, eight female; mean age, 53.6 ± 5.8 years) with gastrointestinal tract cancer. All patients participated in forest therapy for six days. They underwent polysomnography (PSG) and answered questionnaires on sleep apnea (STOP BANG), subjective sleep quality (Pittsburgh Sleep Quality Index, PSQI), sleepiness (Stanford and Epworth Sleepiness Scales), and anxiety and depression (Hospital Anxiety and Depression Scale) to evaluate the quality of sleep before and after forest therapy. Sleep efficiency from the PSG results was shown to have increased from 79.6 ± 6.8% before forest therapy to 88.8 ± 4.9% after forest therapy (p = 0.027) in those patients, and total sleep time was also increased, from 367.2 ± 33.4 min to 398 ± 33.8 min (p = 0.020). There was no significant difference in the STOP BANG score, PSQI scores, daytime sleepiness based on the results of the Stanford and Epworth Sleepiness Scales, and depression and anxiety scores. Based on the results of this study, we suggest that forest therapy may be helpful in improving sleep quality in patients with gastrointestinal cancers.

Relationships Between Meaning in Life, Dispositional Mindfulness, Perceived Stress, and Psychological Symptoms Among Chinese Patients With Gastrointestinal Cancer.

This research examined the degree to which meaning in life explained the association between dispositional mindfulness and psychological symptoms. This was a survey research study with 292 patients with gastrointestinal cancer. Meaning in Life, dispositional mindfulness, psychological symptoms, and perceived stress were assessed. Results showed that consistent with theory and prior research, greater dispositional mindfulness was associated with less psychological symptoms and perceived stress. In addition, the results of the structural equation model verify that meaning in life mediates the association between dispositional mindfulness and perceived stress and psychological symptoms. Findings are consistent with logotheory and suggest that psychological symptoms may be reduced by addressing the impact of meaning in life.

Self-Care Support for Patients with Gastrointestinal Cancer: iCancerHealth.

BACKGROUND: Patient-centered symptom assessment and management tools allow patients to perform self-assessments and engage in self-symptom management. Efficacious tools exist for reducing symptom distress; however, little is known about feature-specific use. OBJECTIVES: This article evaluates the feasibility of the iCancerHealth app as an adjunct to usual patient education regarding cancer symptoms and medication management. METHODS: We conducted a single-arm, pilot study grounded in the health outcomes model. Our evaluation included (1) enrollment rates, (2) 2-month utilization rates, (3) patient acceptability, and (4) clinician satisfaction with the provider-side application. English-speaking, adult patients receiving care in the gastrointestinal oncology service of a comprehensive cancer center were invited to participate. Research coordinators enrolled consenting participants who had a personal, Internet-connected device; participants registered and used the platform to complete the baseline symptom assessment in clinic. Participants were reminded weekly to use the app and to perform a symptom report 4 to 6 weeks later. RESULTS: A total of 64 patients were approached, of which 57 (89%; 95% exact confidence interval [CI], 79-96%) enrolled. About half were ≥ 60 years old and 40% were women. Fifty-three patients (93%; 95% exact CI, 85-99%) accessed at least one app feature, at least once, from home. The most frequently used (86%) feature was Health Tracker in which participants monitored and reported symptoms; followed by My Inbox (63%) and My Medications features (60%). The mean acceptability score was 24.8 (standard deviation = 4.2), indicating good acceptability. Clinicians reported that the app was most acceptable with regard to facilitating in-person interactions that occurred after app use. CONCLUSION: In a sample of adults with various stages of gastrointestinal malignancies, the iCancerHealth app was utilized at a high rate. Features that focused on symptoms and medication side effects plus communication with clinicians were used most frequently. This extends our understanding of preferences and specific feature use with patient-centered technologies.

Characteristics and Outcomes of Ethics Consultations on a Comprehensive Cancer Center's Gastrointestinal Medical Oncology Service.

The goal of this paper is to review and describe the characteristics and outcomes of ethics consultations on a gastrointestinal oncology service and to identify areas for systems improvement and staff education. This is a retrospective case series derived from a prospectively-maintained database (which includes categorization of the primary issues, contextual ethical issues, and other case characteristics) of the ethics consultation service at Memorial Sloan Kettering Cancer Center. The study analyzed all ethics consultations requested for patients on the gastrointestinal medical oncology service from September 2007 to January 2016. A total of 64 patients were identified. The most common primary ethical issue was the DNR order (39%), followed by medical futility (28%). The most common contextual issues were dispute/conflict between staff and family (48%), dispute/conflict intra-family (16%), and cultural/ethnic/religious issues (16%). The majority of ethical issues leading to consultation were resolved (84%); i.e., the patient, surrogate, and/or healthcare team followed the recommendation of the ethics consultant. 22% had a DNR order prior to the ethics consult and 69% had a DNR order after the consult. In this population of patients on a gastrointestinal oncology service, ethics consultations are most often called regarding patients with advanced cancers and the most common ethical conflicts arose between families and the health care team over goals of care at the end of life, specifically related to the DNR order and perceived futility of continued/escalation of treatment. Ethics consultations assisted with conflict resolution. Conflicts might be reduced with improved communication about prognosis and earlier end of life care planning.

Effect of early and intensive nutrition care, delivered via telephone or mobile application, on quality of life in people with upper gastrointestinal cancer: study protocol of a randomised controlled trial.

BACKGROUND: A major challenge for those living with cancers of the upper gastrointestinal tract (oesophagus, stomach and pancreas), is the impact of the disease and treatment on nutritional status and quality of life. People with cancer and malnutrition have a greater risk of morbidity and mortality. Nutrition intervention is recommended to commence immediately in those who are malnourished or at risk of malnutrition. Novel cost-effective approaches that can deliver early, pre-hospital nutrition intervention before usual hospital dietetic service is commenced are needed. Linking clinicians and patients via mobile health (mHealth) and wireless technologies is a contemporary solution not yet tested for delivery of nutrition therapy to people with cancer. The aim of this study is to commence nutrition intervention earlier than usual care and evaluate the effects of using the telephone or mHealth for intervention delivery. It is hypothesised that participants allocated to receive the early and intensive pre-hospital dietetic service will have more quality-adjusted life years lived compared with control participants. This study will also demonstrate the feasibility and effectiveness of mHealth for the nutrition management of patients at home undergoing cancer treatment. METHODS: This study is a prospective three-group randomised controlled trial, with a concurrent economic evaluation. The 18 week intervention is provided in addition to usual care and is delivered by two different modes, via telephone (group 1) or via mHealth (group 2), The control group receives usual care alone (group 3). The intervention is an individually tailored, symptom-directed nutritional behavioural management program led by a dietitian. Participants will have at least fortnightly reviews. The primary outcome is quality adjusted life years lived and secondary outcomes include markers of nutritional status. Outcomes will be measured at three, six and 12 months follow up. DISCUSSION: The findings will provide evidence of a strategy to implement early and intensive nutrition intervention outside the hospital setting that can favourably impact on quality of life and nutritional status. This patient-centred approach is relevant to current health service provision and challenges the current reactive delivery model of care. TRIAL REGISTRATION: 27th January 2017 Australian and New Zealand Clinical Trial Registry ( ACTRN12617000152325 ).

Defining the Elements of Early Palliative Care That Are Associated With Patient-Reported Outcomes and the Delivery of End-of-Life Care.

Purpose We describe the key elements of early palliative care (PC) across the illness trajectory and examine whether visit content was associated with patient-reported outcomes and end-of-life care. Methods We performed a secondary analysis of patients with newly diagnosed advanced lung or noncolorectal GI cancer (N = 171) who were randomly assigned to receive early PC. Participants attended at least monthly visits with board-certified PC physicians and advanced practice nurses at Massachusetts General Hospital. PC clinicians completed surveys documenting visit content after each encounter. Patients reported quality of life (Functional Assessment of Cancer Therapy-General) and mood (Hospital Anxiety and Depression Scale and Patient Health Questionnaire-9) at baseline and 24 weeks. End-of-life care data were abstracted from the electronic health record. We summarized visit content over time and used linear and logistic regression to identify whether the proportion of visits addressing a content area was associated with patient-reported outcomes and end-of-life care. Results We analyzed data from 2,921 PC visits, most of which addressed coping (64.2%) and symptom management (74.5%). By 24 weeks, patients who had a higher proportion of visits that addressed coping experienced improved quality of life ( P = .02) and depression symptoms (Depression subscale of the Hospital Anxiety and Depression Scale, P = .002; Patient Health Questionnaire-9, P = .004). Patients who had a higher proportion of visits address treatment decisions were less likely to initiate chemotherapy ( P = .02) or be hospitalized ( P = .005) in the 60 days before death. Patients who had a higher proportion of visits addressing advance care planning were more likely to use hospice ( P = .03). Conclusion PC clinicians' focus on coping, treatment decisions, and advance care planning is associated with improved patient outcomes. These data define the key elements of early PC to enable dissemination of the integrated care model.

Examining the effect of peer helping in a coping skills intervention: a randomized controlled trial for advanced gastrointestinal cancer patients and their family caregivers.

PURPOSE: At the end of life, spiritual well-being is a central aspect of quality of life for many patients and their family caregivers. A prevalent spiritual value in advanced cancer patients is the need to actively give. To address this need, the current randomized trial examined whether adding a peer helping component to a coping skills intervention leads to improved meaning in life and peace for advanced gastrointestinal cancer patients and their caregivers. Feasibility and acceptability outcomes were also assessed. METHODS: Advanced gastrointestinal cancer patients and caregivers (n = 50 dyads) were randomly assigned to a 5-session, telephone-based coping skills intervention or a peer helping + coping skills intervention. One or both dyad members had moderate-severe distress. Peer helping involved contributing to handouts on coping skills for other families coping with cancer. Patients and caregivers completed measures of meaning in life/peace, fatigue, psychological symptoms, coping self-efficacy, and emotional support. Patient pain and caregiver burden were also assessed. RESULTS: Small effects in favor of the coping skills group were found regarding meaning in life/peace at 1 and 5 weeks post-intervention. Other outcomes did not vary as a function of group assignment, with both groups showing small decreases in patient and caregiver fatigue and caregiver distress and burden. High recruitment and retention rates supported feasibility, and high participant satisfaction ratings supported acceptability. CONCLUSIONS: Although a telephone-based intervention is feasible and acceptable for this population, peer helping in the context of a coping skills intervention does not enhance spiritual well-being relative to coping skills alone.

Relationships between dispositional mindfulness, self-acceptance, perceived stress, and psychological symptoms in advanced gastrointestinal cancer patients.

OBJECTIVE: Previous studies have shown that dispositional mindfulness is associated with less psychological symptoms in cancer patients. The present study investigated how dispositional mindfulness is related to psychological symptoms in advanced gastrointestinal cancer patients by considering the roles of self-acceptance and perceived stress. METHODS: A total of 176 patients with advanced gastrointestinal cancer were recruited to complete a series of questionnaires including Mindfulness Attention Awareness Scale, Self-acceptance Questionnaire, Chinese Perceived Stress Scale, and General Health Questionnaire. RESULTS: Results showed that the proposed model fitted the data very well (χ2  = 7.564, df = 7, P = .364, χ2 /df = 1.094, Goodness of Fit Index (GFI) = 0.986, Comparative Fit Index (CFI) = 0.998, Tucker Lewis Index (TLI) = 0.995, Root Mean Square Error of Approximation (RMSEA) = 0.023). Further analyses revealed that, self-acceptance and perceived stress mediated the relation between dispositional mindfulness and psychological symptoms (indirect effect = -0.052, 95% confidence interval = -0.087 ~ -0.024), while self-acceptance also mediated the relation between dispositional mindfulness and perceived stress (indirect effect = -0.154, 95% confidence interval = -0.261 ~ -0.079). CONCLUSIONS: Self-acceptance and perceived stress played critical roles in the relation between dispositional mindfulness and psychological symptoms. Limitations, clinical implications, and directions for future research were discussed.

Improving Adherence to Cancer Treatment by Addressing Quality of Life in Patients With Advanced Gastrointestinal Cancers.

CONTEXT: Many patients with potentially curable cancer do not complete their prescribed treatment regimens because of the toxicity. There is evidence that the common endpoints of many of these toxicities are amenable to quality of life (QOL)-directed interventions. OBJECTIVES: This study was conducted to determine the effect of a multidisciplinary QOL-directed intervention on patients' adherence to planned chemoradiation (CR) regimens. METHODS: The results of two randomized controlled trials that used the same QOL intervention were pooled to form a cohort of 61 patients with advanced localized gastrointestinal cancer. Of these 61 subjects, 29 participated in six to eight bi- to triweekly sessions that included exercise, education, and relaxation, and 32 received usual medical care. The primary endpoint was completion of their prescribed CR regimens. Secondary outcomes included hospitalization during CR, rates of adverse postoperative events, and complete pathological response in those undergoing neoadjuvant therapy. RESULTS: Significantly, more members of the intervention than the control group completed their planned CR regimens (77.8 vs. 38.2%, P = 0.003). More participants in the control (n = 14) than the intervention (n = 5) group (P = 0.063) required hospitalization. Among those undergoing neoadjuvant CR, those in the intervention group were significantly more likely to complete CR as planned (81.0% vs. 37.5%, P = 0.005) and less likely to be hospitalized (14.3% vs. 50.0%, P = 0.011). CONCLUSION: A structured multidisciplinary QOL-directed intervention delivered to patients undergoing CR may increase the proportion of patients who complete CR as planned and reduce unplanned hospitalizations. Utilization is an important outcome in QOL-directed intervention trials.

Challenges in assessing spiritual distress in survivors of cancer.

BACKGROUND: Many efforts have been made to better integrate spiritual assessment into the care of patients with cancer, with varying degrees of success in different parts of the United States. Little work has been done to describe challenges that face those who seek to implement assessment in busy ambulatory settings, particularly in the northeastern section of the United States. OBJECTIVES: This study sought to test the feasibility of a screening process describing spirituality, distress, and spiritual transformation in cancer survivors after chemotherapy for lung or gastrointestinal cancer.  METHODS: This descriptive pilot study took place in a rural National Cancer Institute- designated comprehensive cancer center, referral center, and outpatient medical oncology clinic. A web-based questionnaire was completed by 29 survivors, and 22 declined participation.  FINDINGS: Respondents were primarily Christian, aged 60 years or older, and an average of 18 months post-diagnosis. The mean spiritual distress score was 1.38 (SD = 2.09), and the mean psychological distress score was 3.03 (SD = 2.73). Participants reported mean spiritual well-being, positive degree of spiritual growth, and little spiritual decline. The opportunity for spiritual growth among survivors creates a need for effective assessment and intervention to promote spiritual growth and mitigate spiritual decline and spiritual distress.

Measuring symptoms in gastrointestinal cancer: a systematic review of assessment instruments.

PURPOSE: It is critical for gastrointestinal cancer researchers and clinicians to have access to comprehensive, sensitive and simple-to-use symptom measures that allow them to understand and quantify the subjective patient experience. Development and validation of such scales requires training in psychometrics and occasionally uses technical jargon that can be difficult to penetrate. This review evaluates existing measures of gastrointestinal cancer symptoms, provides tool descriptions, and uses predefined, objective quality criteria to rate psychometric quality and facilitate tool choices for researchers and clinicians. METHODS: MEDLINE, EMBASE, CINAHL, and PsycINFO databases were systematically reviewed for scales assessing gastrointestinal cancer and gastrointestinal cancer site-specific symptoms. Evaluation criteria were the following: breadth of domain coverage (content validity), high internal consistency (α ≥ .80), sensitivity to change, and extent of validation. RESULTS: In n = 36 validation studies, 26 gastrointestinal cancer symptom measures were identified. Of these, n = 13 tools met criteria for recommendation, and six in particular showed strong psychometric properties. The Functional Assessment of Cancer Therapy-Colorectal (FACT-C), European Organization for Research and Treatment of Cancer (EORTC) gastric cancer module (QLQ-STO22), FACT-Hepatobiliary (FACT-Hep), and EORTC oesophagus, oesophago-gastric junction and stomach module (QLQ OG-25) were identified as the most comprehensive and best validated scales for each of the major gastrointestinal cancer sites. The FACT-Colorectal Symptom Index (FCSI-9) and the National Comprehensive Cancer Network (NCCN) FACT-Hepatobiliary Symptom Index (FHSI-18) were specifically validated in patients with advanced colorectal and liver cancer and also demonstrated superior psychometric properties. CONCLUSIONS: Several comprehensive, well-validated scales exist to adequately assess gastrointestinal cancer site-specific symptoms. Specifically, gastrointestinal cancer submodules of the FACT quality of life questionnaire represent adequate tool choices in most instances and overall, were better validated than the respective EORTC tools. Further improvement of existing, highly rated measures is recommended.

[Dance/movement therapy in oncological rehabilitation]. / Tanztherapie in der stationären onkologischen Rehabilitation.

BACKGROUND: Dance/movement therapy may be defined as a psychosocial and body-oriented art therapy, which uses dance for the expression of emotional and cognitive issues. Dance/movement therapy is an important intervention for cancer patients to enhance coping strategies. There are only few studies investigating dance therapy with cancer patients. METHODS: The present study investigates effects of dance/movement therapy (n = 115) in the setting of inpatient rehabilitation based on a pre-post design with a control group as well as a follow-up 3 months later. Standardized questionnaires measuring quality of life, anxiety and depression, and self-concept (EORTC QLQ-C30, HADS, FSKN) were used. In addition, at the end of the inpatient rehabilitation program subjective expectations of the dance/movement therapy and the patients' subjective evaluation of the benefits of the intervention were measured by a new developed questionnaire. RESULTS: As process factors of dance/movement therapy, expression of emotions, enhancement of self-esteem, development of the personality, vitality, getting inner balance, and getting in touch with the body have been identified. In terms of quality of life and psychological well-being, the results showed significant improvements with medium to large effect sizes. CONCLUSIONS: Even though those effects may not be attributed to the intervention alone, the analysis of the data and the patients' subjective statements help to reveal therapeutic factors and process characteristics of dance/movement therapy within inpatient rehabilitation.

Feasibility pilot on medication adherence and knowledge in ambulatory patients with gastrointestinal cancer.

PURPOSE/OBJECTIVES: To evaluate the feasibility of face-to-face education, a nurse-initiated telephone call, and patient use of medication diaries to support patients' self-reported medication adherence and knowledge of oral chemotherapy. DESIGN: Descriptive, feasibility pilot study. SETTING: An outpatient oncology unit at a National Cancer Institute-designated comprehensive cancer center. SAMPLE: 30 patients with gastrointestinal cancer who were prescribed at least one oral chemotherapy agent. METHODS: Participants received verbal and written education and a nurse-initiated educational telephone call within 72 hours of receiving education. Each was asked to complete a medication diary at home during the first cycle and the eight-item Morisky Medication Adherence Scale (MMAS-8) at the end of the first cycle of oral chemotherapy. MAIN RESEARCH VARIABLES: Verbal and written education, telephone contacts, drug diary, self-reported medication adherence, and patient knowledge. FINDINGS: Most patients (n = 29) received both verbal and written education, participated by telephone (n = 25), and completed the medication diaries (n = 21) correctly. Seventeen participants documented side effects within the first 72 hours of treatment initiation, with eight participants needing additional assistance with management of side effects. At the end of the first cycle of therapy, MMAS-8 adherence scores were high (X = 7.89, SD = 0.55). CONCLUSIONS: This study demonstrated the feasibility of a nurse-initiated educational and monitoring protocol for patients with gastrointestinal cancer receiving oral chemotherapy. In addition, the adapted MMAS-8 was a feasible adherence measure. IMPLICATIONS FOR NURSING: Pilot findings support targeted nurse interventions with face-to-face and telephone education to enhance self-monitoring and adherence for patients with gastrointestinal cancer receiving oral chemotherapy.

Goals set in the land of the living/dying: a longitudinal study of patients living with advanced cancer.

A longitudinal qualitative research study was undertaken to provide an understanding of a prolonged experience of advanced cancer, as seen through the eyes of dying individuals. Using a variant of the grounded theory method, the authors theoretically sampled, from outpatient clinics in a large comprehensive cancer treatment center, 27 patients with either advanced lung or gastrointestinal cancer who had an expected survival of up to 2 years. The authors conducted a total of 54 interviews with these patients to learn of their experience of advanced cancer. The authors represent their experience with the core category: striving to grow in the land of the living/dying, symbolizing their sense of finding themselves in a borderland between life and death where their efforts focused on 3 common goals. controlling dying, valuing life in the present, and creating a living legacy. They provide a longitudinal account of how these goals were addressed throughout the illness trajectory and discuss the theoretical and clinical implications of this understanding for the experience of dying from advanced cancer.

[Caregiving burden and associated factors among caregivers of terminally ill gastrointestinal cancer patients].

BACKGROUND: Heavy caregiving burdens can harm the physical and mental health of primary caregivers and reduce patient care quality. Understanding caregiving burden and its associated factors among primary caregivers of terminally ill patients with gastrointestinal cancer can help improve holistic terminal healthcare quality. PURPOSE: The authors explore in this paper the relationship between caregiving burden and terminally ill gastrointestinal cancer patient disease characteristics, demographic backgrounds, level of social support, self-care efficacy, fear of death and self-perceived symptom distress in both patients and primary caregivers. METHODS: This was a cross-sectional, descriptive, and correlational study that used convenience sampling and structured questionnaires. Data were collected from 178 family caregivers of terminally ill patients with gastrointestinal cancer in the Tainan and Chiayi areas of Southern Taiwan. RESULTS: The caregiving burden of caregivers of terminally ill gastrointestinal cancer patients in hospice homecare was significantly higher than that of those recruited from outpatient departments. Caregiving burden for liver and pancreatic cancer patients was significantly higher than for colorectal cancer patients. The caregiving burden of spousal caregivers was significantly higher than that of lineal blood relatives. The caregiving burden of caregivers with worse self-perceived health status was significantly higher than that of those with better self-perceived health status. The most important explanatory factors of caregiving burden among primary caregivers terminally ill gastrointestinal cancer patients were (in descending order) social support, self-perceived symptom distress in patient, self-perceived health status, location of study subject recruitment, fear of death, and relationship with patient; these factors explained 63.8% of the total variation. Social support was the most important explanatory factor, explaining 37.2% of total variance. CONCLUSIONS: We recommend that terminal health care teams better assess the social support given primary caregivers of terminally ill gastrointestinal cancer patients, that assistance be provided to caregivers with less social support, that caregiver life-and-death education be improved, and that primary caregivers be taught how to accept and positively handle the death of the loved one in their care. More attention should be paid to controlling symptoms of terminal stage cancer patients in order to reduce caregiver self-perceived symptom distress. Evaluation of caregiving burden is especially important for those primary caregivers who are hospice homecare workers, spouses, and of lower self-perceived health status.

Longitudinal study of depressive symptoms in patients with metastatic gastrointestinal and lung cancer.

PURPOSE: Although early intervention is increasingly advocated to prevent and relieve distress in patients with metastatic cancer, the risk factors for such symptoms and their trajectory are not well established. We therefore conducted a longitudinal study to determine the course and predictors of depressive symptoms. PATIENTS AND METHODS: Patients (N = 365) with metastatic gastrointestinal or lung cancer completed measures of physical distress, self-esteem, attachment security, spiritual well-being, social support, hopelessness, and depression at baseline; physical distress, social support, hopelessness, and depression were subsequently assessed at 2-month intervals. RESULTS: Of the sample, 35% reported at least mild depressive symptoms, with 16% reporting moderate to severe depressive symptoms that persisted in at least one third of such individuals. Moderate to severe depressive symptoms were almost three times more common in the final 3 months of life than > or = 1 year before death. Predictors of depressive symptoms included younger age, antidepressant use at baseline, lower self-esteem and spiritual well-being, and greater attachment anxiety, hopelessness, physical burden of illness, and proximity to death. The combination of greater physical suffering and psychosocial vulnerability put individuals at greatest risk for depression. CONCLUSION: Depressive symptoms in advanced cancer patients are relatively common and may arise as a final common pathway of distress in response to psychosocial vulnerabilities, physical suffering, and proximity to death. These findings support the need for an integrated approach to address emotional and physical distress in this population and to determine whether early intervention may prevent depression at the end of life.

Pathways to distress: the multiple determinants of depression, hopelessness, and the desire for hastened death in metastatic cancer patients.

We tested a model in which psychosocial and disease-related variables act as multiple protective and risk factors for psychological distress in patients with metastatic cancer. We hypothesized that depression and hopelessness constitute common pathways of distress, which mediate the effects of psychosocial and disease-related factors on the desire for hastened death. This model was tested on a cross-sectional sample of 406 patients with metastatic gastrointestinal or lung cancer recruited at outpatient clinics of a Toronto cancer hospital, using structural equation modeling. The results supported the model. High disease burden, insecure attachment, low self-esteem, and younger age were risk factors for depression. Low spiritual well-being was a risk factor for hopelessness. Depression and hopelessness were found to be mutually reinforcing, but distinct constructs. Both depression and hopelessness independently predicted the desire for hastened death, and mediated the effects of psychosocial and disease-related variables on this outcome. The identified risk factors support a holistic approach to palliative care in patients with metastatic cancer, which attends to physical, psychological, and spiritual factors to prevent and treat distress in patients with advanced disease.

Effects of socioeconomic factors and cancer survivors' worries on their quality of life (QOL) in Japan.

Effects of socioeconomic factors and cancer survivors' worries on their quality of life (QOL) were investigated. In 2002, Japanese national survey was performed to assess distress among cancer patients using a semi-structured questionnaire (http://www.scchr.jp/yorozu/pdf/taiken_koe_eng.pdf). We investigated relationships between patients' distress and their QOL measured by European Organization for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30) and Functional Assessment of Chronic Illness Therapy--12-item Spiritual Well-Being Scale (FACIT-Sp), using a covariance structure analysis and multivariate regression analysis. A total of 130 outpatients (male: 42%; average age: 59 years; performance status rating 0-2:89%; breast/lung/gastrointestinal cancer: 38/22/21%) answered the questionnaires. A covariance structure analysis extracted latent variables, which were named socioeconomic distress and cancer worries, using a model that sufficiently represented the observed data (Goodness of fit index = 0.833). Regression analysis demonstrated that higher family income significantly correlated with better Global health status/QOL (p = 0.003) but that losing a job negatively correlated with all of the scales on functioning in the QLQ-C30 (p < 0.05) and spiritual well-being (p < 0.05). Patients' QOL was also affected by physical worries and spiritual issues in terms of emotional, cognitive, and social functioning. In conclusion, cancer survivors' QOL was doubly affected by socioeconomic distress and cancer worries. In the former, lower family income and losing employment by experiencing cancer had a negative impact on patients' QOL. As to the latter, physical worries and spiritual issues also affected patients' QOL.