Fatigue-related symptom clusters and functional status of older adults in hospice.

BACKGROUND: Fatigue is frequently co-existing with other symptoms and is highly prevalent among patients with cancer and geriatric population. There was a lack of knowledge that focus on fatigue clusters in older adults with cancer in hospice care. OBJECTIVES: To identify fatigue-related symptom clusters in older adult hospice patients and discover to what extent fatigue-related symptom clusters predict functional status while controlling for depression. METHOD: This was a cross-sectional study in a sample of 519 older adult hospice patients with cancer, who completed the Memorial Symptom Assessment Scale, the Center for Epidemiological Studies Depression, Boston Short Form Scale, and the Palliative Performance Scale. Data from a multi-center symptom trial were extracted for this secondary analysis using exploratory factor analysis and hierarchical multiple regression analysis. RESULTS: Data from 519 patients (78 ± 7 years) with terminal cancer who received hospice care under home healthcare services revealed that 39% of the participants experienced fatigue-related symptom clusters (lack of energy, feeling drowsy, and lack of appetite). The fatigue cluster was significantly associated positively with depression (r = 0.253, p < 0.01), and negatively with functional status (r = -0.117, p < 0.01) and was a strong predictor of participants' low functional status. Furthermore, depression made a significant contribution to this predictive relationship. CONCLUSION: Older adult hospice patients with cancer experienced various concurrent symptoms. The fatigue-specific symptom cluster was identified significantly associated with depression and predicted functional status. Fatigue should be routinely monitored in older adults, especially among hospice cancer patients, to help reduce psychological distress and prevent functional decline.

Gut microbiota perturbation is associated with acute sleep disturbance among rectal cancer patients.

Cancer treatment-associated gut microbial perturbation/dysbiosis has been implicated in the pathobiology of sleep disturbance; however, evidence is scarce. Eighteen newly diagnosed rectal cancer patients (ages 52-81 years; 10 males) completed a sleep disturbance questionnaire and provided stool samples for 16s RNA gene sequencing during chemo-radiotherapy. Descriptive statistics, Wilcoxon test and regression analyses were computed. Regression analyses showed the Shannon's diversity index to be a significant factor associated with sleep disturbance. This preliminary work suggests that the biological "gut-brain axis" mechanism may be associated with symptoms of sleep disturbance.

Neuropathic symptoms, physical and emotional well-being, and quality of life at the end of life.

The purpose of this cross-sectional, descriptive study was to assess differences in neuropathic symptoms, physical and emotional well-being, and quality of life in cancer patients at the end of life compared to those without neuropathic symptoms. Neuropathic symptoms were defined as numbness and tingling in the hands and/or feet. A secondary analysis of data from two hospices in Central Florida was performed. Adults (n = 717) with a cancer diagnosis, an identified family caregiver, and who were receiving hospice services, were eligible. The prevalence of numbness/tingling in the hands or feet was 40% in this sample of hospice patients with cancer. Participants with neuropathic symptoms of numbness/tingling had a significantly higher prevalence of pain (76.7% vs. 67.0%; p = .006), difficulty with urination (29.4% vs. 20.3%; p = .007), shortness of breath (64.9% vs. 54.1%; p = .005), dizziness/lightheadedness (46.0% vs. 28.2%; p < .001), sweats (35.5% vs. 20.3%; p < .001), worrying (50.7% vs. 37.3%; p = .001), feeling irritable (38.5% vs. 28.7%; p = .008), feeling sad (48.2% vs. 37.8%; p = .008), and difficulty concentrating (46.2% vs. 32.5%; p < .001). They also reported significantly higher overall symptom intensity and symptom distress scores (p = < .001), higher pain severity (p = .001) and pain distress (p = .002), and decreased quality of life (p = .002) compared to those without numbness/tingling. Neuropathic symptoms are emotionally distressing at the end of life and associated with higher symptom burden and diminished quality of life.

Understanding the roles of patient symptoms and subjective appraisals in well-being among breast cancer patients.

PURPOSE: To examine the roles of both patient symptoms, and subjective appraisals of stress (self-efficacy, symptom barriers, symptom distress), in understanding well-being (anxiety, depression, cancer-specific quality of life, mental health quality of life, and physical health quality of life) in breast cancer patients. METHODS: We examined data from 104 female breast cancer patients. Using a stress process model, we hypothesized that while high levels of patient symptoms would be associated with poorer patient well-being, these effects would be mediated by subjective appraisals, including patient self-efficacy, perceived symptom barriers, and symptom distress. RESULTS: As expected, higher levels of patient symptoms were associated with poorer well-being on all five indicators. Subjective appraisals of stress added significantly to predictors of well-being, and were mediators of this relationship across all five outcomes. CONCLUSIONS: While patient symptoms are important predictors of patient well-being, subjective appraisals of the stressfulness of symptoms, and of patients' self-efficacy in managing symptoms, are also key factors. The findings suggest the utility of a stress process model in understanding well-being in breast cancer patients, and point to the potential value of targeting patient appraisals as well as symptoms to improve psychological well-being and quality of life.

Cultural adaptation of a supportive care needs measure for Hispanic men cancer survivors.

OBJECTIVE: Research with ethnic minority populations requires instrumentation that is cultural and linguistically relevant. The aim of this study was to translate and culturally adapt the Cancer Survivor Unmet Needs measure into Spanish. METHODS: We describe the iterative, community-engaged consensus-building approaches used to adapt the instrument for Hispanic male cancer survivors. We used an exploratory sequential mixed method study design. Methods included translation and back-translation, focus groups with cancer survivors (n = 18) and providers (n = 5), use of cognitive interview techniques to evaluate the comprehension and acceptability of the adapted instrument with survivors (n = 12), ongoing input from the project's community advisory board, and preliminary psychometric analysis (n = 84). RESULTS: The process emphasized conceptual, content, semantic, and technical equivalence. Combining qualitative and quantitative approaches offered a rigorous, systematic, and contextual approach to translation alone and supports the cultural adaptation of this measure in a purposeful and relevant manner. CONCLUSION: Our findings highlight the importance of going beyond translation when adapting measures for cross-cultural populations and illustrate the importance of taking culture, literacy, and language into consideration.

Validation of the Spanish version of the Cancer Symptom Scale in Hispanic cancer patients.

AIM: To assess the validity of the translated Spanish Cancer Symptom Scale. BACKGROUND: Instruments to facilitate comprehensive and objective assessments of the cancer symptom experience in underrepresented populations are essential. METHODS: The Cancer Symptom Scale was translated into Spanish, and a back translation was conducted. During June 2016, a sample of 121 Hispanic Puerto Rican patients with any cancer diagnosis, all undergoing cancer treatments, completed four paper surveys. A subgroup of 15 patients agreed to complete the Spanish Cancer Symptom Scale a second time after a short delay of 1 to 2 hours. Construct validity and reliability (internal consistency via Cronbach alpha and test-retest reliability) was evaluated. RESULTS: All the Intensity Items of the Spanish Cancer Symptom Scale correlated significantly with the matched items on the MD Anderson Symptom Inventory. In a subgroup of 77 participants, each Cancer Symptom Scale subscale total of scores correlated significantly with the total scores from the Functional Assessment of Cancer Therapy-General. Discriminant validity was demonstrated between those receiving chemotherapy and those from post treatment. The Spanish Cancer Symptom Scale internal consistency reliability was 0.98. CONCLUSION: The Spanish Cancer Symptom Scale has excellent evidence of validity and reliability for assessing cancer-therapy-related symptoms.

The Health related Quality of Life of Puerto Ricans during Cancer Treatments; A Pilot Study.

OBJECTIVE: To examine the health related quality of life (HRQOL) experienced by 79 Puerto Rican adults during cancer treatments. METHODS: This study used a descriptive, cross-sectional design. Participants completed a demographics form and the Functional Assessment of Cancer Therapy-General QOL questionnaire (FACT-G). Descriptive statistics were generated. RESULTS: Participants were ages 28-78; most of the participants had breast (38.0%), prostate (14.0%) and cervical and ovarian cancers (10.1%) treated with chemotherapy (45.6%). The participants had a mean total score on the FACT-G of 75.2 (SD = 18.9). As a group, the functional well-being was the most affected (mean 17.2, SD 6.8), and the Social/Familial was the least affected (mean 20.7, SD 6.0). CONCLUSION: Cancer is the leading cause of death in the island of Puerto Rico. Female Puerto Rican cancer patients in this study sample had increased risk for experiencing worse: overall HRQOL, physical well-being and emotional well-being compared to males. Given that the Hispanic oncology population does not always report symptoms, risking under-assessment and under management, this suggests there may be a greater need for HRQOL surveillance for this population.

Understanding the supportive care needs of Hispanic men cancer survivors.

OBJECTIVE: To date, there is a paucity of research and information on Hispanic men cancer survivors (HMCS), who comprise part of the largest and fastest growing racial/ethnic minority group in the country. The purpose of this paper is to provide a deeper understanding of the supportive care needs of HMCS. DESIGN: Three focus groups with a community sample of HMCS (n = 18) and interviews with providers (n = 5) were conducted to explore the supportive care needs of Hispanic men who had been diagnosed with cancer within the last five years. The data were analyzed using applied thematic analysis techniques. RESULTS: Findings from focus groups and interviews are presented concurrently. The overarching themes that emerged were the need for: culturally sensitive cancer care and better communication with providers; cancer treatment-related information and comprehensive survivorship care; support and to connect with other cancer survivors and the need to negotiate changing gender role expectations and still provide for their family. CONCLUSION: Study findings contribute to the literature by presenting the supportive care needs of HMCS and illustrate the need for continued research to address disparities in access to cancer information and in the provision of culturally sensitive care. We provide recommendations and suggestions to address the supportive care needs of HMCS.

Dietary and Lifestyle Risk Factors for Colorectal Cancer in Apparently Healthy Adults in Jordanian Hospitals.

Colorectal cancer (CRC) is a frequently occurring cancer in Jordan. CRC risk is expected to continue rising due to dietary patterns, sedentary lifestyle, and other practices. The aim of this study was to describe the prevalence of dietary and lifestyle risk factors for CRC among patients attending outpatient gastroenterology clinics in Jordan. A descriptive, cross-sectional design was used to collect data from 713 asymptomatic participants. Data was collected using a self-report questionnaire measuring sociodemographic characteristics, dietary habits, physical activity, and lifestyle risk factors of CRC. The mean age of participants was 57.0 ± 8.56 years. The majority of participants were male (71.8 %) and with less than secondary school formal education (60.7 %). The commonest risk factors for CRC among the participants were overweight or obesity (76.1 %), lack of exercise (71.6 %), limited consumption of vegetables (70.8 %), smoking (60.6 %), over consumption of red meat (56.3 %), and diabetes mellitus (24.1 %). Dietary and lifestyle risk factors for CRC are prevalent in Jordan and likely to fuel an upsurge CRC if population-wide educational interventions are not implemented. There is need for greater attention and emphasis on strategies to educate the general population about healthy dietary and lifestyle habits as means of preventing CRC in Jordan.

A psychometric examination of an instrument to measure the dimensions of Champion's Health Belief Model Scales for cervical cancer screening in women living with HIV.

PURPOSE: The purpose of this paper was to examine the psychometric properties of Champion's Health Belief Model Scales for cervical cancer and screening among women living with HIV. METHODS: A secondary data analysis was conducted using data from an exploratory cross-sectional study with a convenience sample of 300 women living with HIV receiving care at two HIV ambulatory care clinics in Florida. A 39-item adaptation of the Champion's Health Belief Model Scales was administered via paper and pencil. RESULTS: The authors used internal consistency measures, confirmatory factor analysis, and ordinal item response theory (IRT) techniques to examine the psychometric properties of the instrument. The 39-item instrument had adequate internal consistency and factor structure. However, the IRT analyses suggested that the instrument could be reduced to 24-items (61.5%), without loss of relevant information. CONCLUSION: A shortened 24-item instrument demonstrated good internal consistency among women living with HIV. Future work should include validating the properties of the reduced instrument in diverse samples of patients and conditions.

Role of self-care in sickle cell disease.

Self-care is an important aspect of managing a chronic disease. In sickle cell disease (SCD), home self-care contributes to individual pain management and thus pain crisis prevention. A better understanding of self-care can help health care providers equip patients with the resources and skills necessary to participate in their disease management. The aim of this study was to examine factors that influence self-care among young adults with SCD. A descriptive, cross-sectional study was conducted using secondary data analysis. Participants were recruited from two SCD clinics in the southeastern United States. The sample consisted of 103 young adults, ages 18 to 30 years, with SCD. Bivariate correlations and regression analyses were used to evaluate the relationships among SCD self-efficacy, social support, sociodemographics, self-care, and hospital visits for pain crises. Study participants were primarily women (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an annual average of three hospital visits for pain crises. Participants, on average, had 12 years of education, an annual household income of $35,724, and were 24 years old. Social support (p = .001), SCD self-efficacy (p = .002), and years of education (p = .043) were significantly related to self-care. Of the hypothesized variables, only income was significantly associated with hospital visits for pain crises (r = -0.219, p = .05). Individuals with SCD may benefit from self-care interventions that enhance social support, SCD self-efficacy, and access to education. To inform intervention development, further investigation is needed regarding daily self-care behaviors used by young adults with SCD.

Issues Faced by Family Caregivers of Hospice Patients with Head and Neck Cancers.

PURPOSE: The purpose of this study was to explore issues reported by caregivers of Head and Neck cancer (HNC) patients newly admitted to hospice homecare. METHODS: 26 caregivers providing hospice homecare to patients with HNC were induded. Caregiver depressive symptoms, social support and perceived health data were analyzed. RESULTS: The caregivers reported few depressive symptoms, good perceived social support, and good perceived health; however, there was large variation in the group with some individuals having significant problems. DISCUSSION: Caregivers appeared to be doing well physically, emotionally and socially, but baseline data were used, so follow-up data are needed. Further research is warranted. CONCLUSIONS: Family caregivers also are affected by the experience of cancer and may have depressive symptoms needing assessment and management. Hospice patients with HNC have a variety of symptoms specific to their disease and treatment that need assessment and management by their family caregivers. Caregivers of HNC patients in hospice and palliative care need and deserve attention from hospice providers as they care for patients.

Lessons from the field: challenges in accruing hospice heart failure patients to intervention research.

Recent clinical practice guidelines suggest that hospice can be a valuable alternative for patients with advanced heart failure (HF). Unfortunately, there are very few evidence-based nursing interventions to guide symptom management for HF patients in hospice and their caregivers. Nevertheless, conducting clinical research in hospice populations remains fraught with methodological and ethical challenges. Our research team was not naive to the fact that hospice research is difficult. We believed that we had prepared well for a number of contingencies before the beginning of our clinical trial testing the feasibility of delivering a psychosocial intervention to caregivers of patients with HF. Despite the team expertise and well-defined recruitment strategies, the recruitment, both accrual and attrition, remained daunting in this population. The purpose of this article was to report the challenges of recruiting hospice patients with HF and caregivers for our randomized clinical trial, those we anticipated and those we did not.

Risk factors associated with increased depressive symptoms among Latinas diagnosed with breast cancer within 5 years of survivorship.

BACKGROUND: Co-occurring depression in women with cancer can complicate cancer treatment, lead to poor treatment adherence for both conditions, and decrease survival if left untreated. The purpose of this study was to explore risk factors for depression among Latina breast cancer survivors. METHODS: A closed-ended questionnaire was administered by telephone to 68 Latinas diagnosed with breast cancer within the past 5 years. Depression symptoms were measured using the Patient Health Questionaire-9 with the Endicott substitutive criteria applied. The Cognitive Appraisal Health Scale and the Brief COPE were used to measure appraisal and coping. Descriptive statistics, bivariate and multiple linear regression analyses were completed. RESULTS: Approximately 45.6% of women reported depressive symptoms. Multivariate analyses showed that a cognitive appraisal variable (decreased challenge or the potential to overcome), coping variables (increased acceptance, less positive reframing, less active coping, less use of emotional support, substance use and more self-blame), poor body image, less family and peer support to be significantly associated with an increased risk for depression. Intrapersonal variables accounted for the greatest explained variance (69%). CONCLUSIONS: This study identified several risk factors for depression. Study findings highlight the need for intervention programs to help women normalize emotions and thoughts related to cancer and its treatments, and to improve their cognitive abilities to overcome, accept, and positively reframe cancer and other difficult situations women face throughout the cancer continuum. The importance of family and peer support to improve depressive symptoms was also evident.

Examining the Psychometric Properties of the Taiwanese Version of the Hospice Quality of Life Index.

Quality of life is an important outcome for people with cancer throughout their cancer trajectory. Having a valid and reliable instrument to measure the quality of life is critical. This cross-sectional study examined the psychometric properties of the Taiwanese version of the Hospice Quality of Life Index among patients with advanced cancer in Taiwan. There were 3 phases: (1) translation of the Hospice Quality of Life Index from English to Mandarin, (2) pilot testing among 30 targeted participants, and (3) field testing to examine validity and reliability. The results of confirmatory factor analysis indicated that the original factor structure of the Hospice Quality of Life Index did not fit the data. After 5 items were deleted from the original questionnaire, principal factor extraction with oblique rotation for exploratory factor analysis yielded 3 subscales: Social/Spiritual Well-Being, Psychological Well-Being, and Functional/Physiological Well-Being. For convergent validity, the small to moderate strength of associations showed shared variance with the Memorial Symptom Assessment Scale. The internal consistency was supported by Cronbach α ranging from 0.77 to 0.86. This study shows early evidence that the quality of life of people with advanced cancer can be appropriately assessed by the Taiwanese Hospice Quality of Life Index.

Use and helpfulness of self-administered stress management therapy in patients undergoing cancer chemotherapy in community clinical settings.

The purpose of this multicenter longitudinal randomized controlled trial was to examine the efficacy of self-administered stress management training (SSMT) in improving quality of life and reducing psychological distress among patients receiving cancer chemotherapy. Participants were randomized to SSMT (n = 111) or usual psychosocial care only (n = 109). Mixed linear modeling demonstrated no significant improvements in primary outcome measures; however, participants assigned to SSMT reported using significantly more relaxation techniques (p < 0.0001), showed improvements on emotional adjustment scores, and demonstrated a stabilizing effect on the functional adjustment scores. Findings highlight the usefulness of SSMT in community clinical settings.

The Mutual Effects of Perceived Spiritual Needs on Quality of Life in Patients With Advanced Cancer and Family Caregivers.

Perceived spiritual needs may increase when patients with advanced cancer and their family caregivers are confronted with the challenges of physical and psychological distress. Given the intertwined relationships between patients and family caregivers, their interdependence should be considered to understand how perceived spiritual needs affect the quality of life of their own and of their partner. This study used the Actor-Partner Interdependence Model as the conceptual model to investigate the mutual effects of perceived spiritual needs on the quality of life in patients with advanced cancer and their family caregivers after being admitted to hospice. This cross-sectional study used the baseline data of a large clinical trial and identified that patients with cancer and their family caregivers perceived similar spiritual needs associated with the community and outlook needs and had fewer unmet spiritual needs. After controlling for partner effects, perceived outlook needs shown in patients significantly predicted their own functional well-being and social/spiritual well-being. Outlook and community needs perceived by family caregivers also significantly predicted their own mental health. Although partner effects were not shown as expected, the findings provide insight into the mutuality of spirituality and demonstrate the necessity of providing timely and ongoing spiritual assessment and care.

Changes in Gut Microbiome Associated With Co-Occurring Symptoms Development During Chemo-Radiation for Rectal Cancer: A Proof of Concept Study.

PURPOSE: To examine a) whether there are significant differences in the severity of symptoms of fatigue, sleep disturbance, or depression between patients with rectal cancer who develop co-occurring symptoms and those with no symptoms before and at the end of chemotherapy and radiation therapy (CRT); b) differences in gut microbial diversity between those with co-occurring symptoms and those with no symptoms; and c) whether before-treatment diversity measurements and taxa abundances can predict co-occurrence of symptoms. METHODS: Stool samples and symptom ratings were collected from 31 patients with rectal cancer prior to and at the end of (24-28 treatments) CRT. Descriptive statistics were computed and the Mann-Whitney U test was performed for symptoms. Gut microbiome data were analyzed using R's vegan package software. RESULTS: Participants with co-occurring symptoms reported greater severity of fatigue at the end of CRT than those with no symptoms. Bacteroides and Blautia2 abundances differed between participants with co-occurring symptoms and those with no symptoms. Our random forest classification (unsupervised learning algorithm) predicted participants who developed co-occurring symptoms with 74% accuracy, using specific phylum, family, and genera abundances as predictors. CONCLUSION: Our preliminary results point to an association between the gut microbiota and co-occurring symptoms in rectal cancer patients and serves as a first step in potential identification of a microbiota-based classifier.

Quality of life among women veterans.

BACKGROUND: Of 23 million US veterans, 2 million are women. Female veterans often have physical and mental health disorders, but only 6.5% use the Veterans Health Administration (VA) system. Health care for women veterans is challenging in a health care system unfamiliar with this population. PURPOSE: The purpose of this study was to investigate how receipt of treatment by female veterans at a VA women's health specialty clinic affected levels of distress, quality of life (QOL), and depression. METHODS: A retrospective record review was completed on 51 female veterans between the ages of 40 and 60 years attending a VA clinic. The clinic provides comprehensive women's health services to female veterans. Multiple linear regression models were fit to explore QOL and depression levels with socioeconomic status, parity, years of service, and military sexual trauma (MST). RESULTS: Female veterans had significantly lower baseline scores for QOL than did a comparison group. The only significant predictor associated with higher health-related symptom scores at baseline was a history of MST (ß = 0.363; t = 2.44; p = .02). Means and standard deviations for total scores were significantly higher than those of the comparison group. Higher symptom scores indicated lower QOL among female veterans. IMPLICATIONS FOR PRACTICE: Study findings suggested that timely, comprehensive, gender-specific health care can significantly improve overall QOL and depression levels. Nurse practitioners play a leading role in providing primary care to this population with significant potential to impact QOL, depression levels, and overall health of female veterans.

Examining the Relationship Between Patient Fatigue-Related Symptom Clusters and Carer Depressive Symptoms in Advanced Cancer Dyads: A Secondary Analysis of a Large Hospice Data Set.

BACKGROUND: Most symptom management takes place in the community, conducted by patient and/or informal carer dyads with guidance from clinicians. Given the prevalence of cancer, there is a critical need for examination of the impact of managing multiple symptoms, particularly those that cluster with fatigue, on informal carers. OBJECTIVES: To (1) examine clustering of patient fatigue-related symptom severity and distress in individuals with cancer and (2) test the hypothesis that patient fatigue-related symptom clusters (severity, distress) will be positively associated with carer depressive symptoms. METHODS: Secondary analysis of 689 hospice patient/informal carer dyads using exploratory factor analysis and structural equation modeling. Patient symptoms were measured by the Memorial Symptom Assessment Scale, and carer depressive symptoms were measured by the Center for Epidemiological Study-Depression Scale. RESULTS: Patients were 73 (SD, 12) years old, and 43% were female. Carers were 65 years (SD, 14) years old, and 74% were female. For symptom severity, dyspnea, dry mouth, lack of appetite, drowsiness, cough, dizziness, and difficulty swallowing clustered with fatigue. For symptom distress, dyspnea, cough, and dry mouth clustered with fatigue. Structural equation modeling results indicated that the patient fatigue severity cluster was positively related to carer depressive symptoms (b = 0.12, P < .05), but distress was not. CONCLUSION: Managing multiple symptoms that cluster with fatigue negatively impacts informal carers. IMPLICATIONS FOR PRACTICE: When patients complain of severe fatigue, clinicians need to explore all causes and ask about other symptoms while exploring whether the informal carer is feeling burdened or depressed.