晚期乳腺癌患者年龄和生存质量对其家庭照顾者生存质量的影响

目的：探讨晚期乳腺癌患者年龄及生存质量对其家庭照顾者的生存质量的影响。方法选取130例晚期乳腺癌患者及其130名家庭照顾者为研究对象,家庭照顾者完成照顾者生活质量指数-癌症表（CQOLC）问卷调查,所有的患者和家庭照顾者完成线性模拟自评量表（LASA）调查评估生活质量（QOL）,心境量表（POMS）评估心理状态。结果年龄≥65岁的晚期乳腺癌患者其照顾者心理健康、情感健康、精神健康、社会支持、总POMS分和总CQOLC分均高于年龄﹤65岁的患者照顾者,差异均具有统计学意义（P﹤0.05）。患者LASA中总的QOL评分﹥50分的晚期乳腺癌患者照顾者总QOL分、心理健康、身体健康、情感健康、精神健康、总POMS分和总CQOLC分均高于LASA中总的QOL评分≤50分的患者照顾者,差异均具有统计学意义（P﹤0.05）。结论晚期乳腺癌患者年龄≥65岁、生存质量高,其相应的家庭照顾者生存质量亦高。     

Burden,emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study

This study was conducted to explore the interrelationships among caregiver burden, emotional status and quality of life (QoL) in caregivers of lung cancer patients, and to identify whether caregiver burden and health status are associated with patient emotional status and QoL. Forty‐three dyads of lung cancer patients and their caregivers were included for analysis. Caregiver‐reported outcomes were measured by Caregiver Burden Scale (CBS), Caregivers Quality of Life Index‐Cancer (CQOLC) and Hospital Anxiety and Depression Scale (HADS), while patient‐reported outcomes were collected by HADS and Lung Cancer Symptom Scale (LCSS). The majority of the CBS and CQOLC scores were significantly higher in anxious and depressed caregivers than non‐anxious and non‐depressed caregivers (p < .01 or .05). Caregivers of depressed patients experienced significantly greater emotional distress than those of non‐depressed patients (p < .01). Significantly positive associations were identified among most of the CBS, CQOLC and caregiver HADS scores. Patient LCSS scores were positively correlated with the CBS and caregiver HADS scores, and patient HADS scores were also positively related to caregiver HADS scores. The close interrelationships between caregiver and patient health outcomes provide evidence that lung cancer patients and their caregivers should be viewed as a unit in future supportive service models.     

Do age and quality of life of patients with cancer influence quality of life of the caregiver?

ObjectiveThere are significant burdens associated with providing care for loved ones with cancer. However, caregiver quality of life (QOL) is often overlooked. With the increasing number of older adults with cancer, it is important to determine whether a patient's age and QOL have any association with the caregiver's QOL. The objective of our study was to describe caregiver QOL and explore whether patient age and other psychosocial factors impact caregiver QOL.Materials and MethodsBaseline information from patients with advanced cancer undergoing radiation and their caregivers, who were enrolled in a randomized, controlled clinical trial to test the effectiveness of a structured, multidisciplinary QOL intervention, was analyzed for this study. Caregivers completed the Caregiver Quality of Life Index-Cancer (CQOLC) Scale. Both patients and caregivers completed the Linear Analogue Self-Assessment (LASA) to measure QOL, and Profile of Mood States (POMS) to measure mood states.ResultsOverall, 131 patient–caregiver pairs participated in the study. At baseline, caregivers of older adults (≥ 65 years) had higher mental (P = 0.01), emotional (P = 0.003), spiritual (P < 0.01), and social support (P = 0.03) LASA QOL scores. Caregivers of older adults also had higher baseline QOL (CQOLC, P = 0.003) and mood (POMS, P = 0.04) than caregivers of younger adults. Caregivers of patients with higher LASA QOL scores had higher overall (P = 0.02), mental (P = 0.006), physical (P = 0.02), emotional (P = 0.002), and spiritual LASA QOL scores (P = 0.047).ConclusionsCaregivers of older adults with advanced cancer demonstrated better QOL and fewer mood disturbances compared to caregivers of younger patients. When patients have good QOL, caregivers also had good QOL.     

Underestimated caregiver burden by cancer patients and its association with quality of life,depression and anxiety among caregivers

This study examined how patients with cancer estimate caregiver burden (CB) and the association between their underestimation of CB and their caregivers' self‐ratings of their quality of life (CQOLC‐K; Korean version of the Caregiver Quality of Life Index‐Cancer), depression and anxiety (Korean version of the Hospital Anxiety and Depression Scale). Participants consisted of 990 patient‐caregiver dyads recruited from a nationwide cross‐sectional survey conducted in South Korea. Medical baseline data were retrieved from the hospital information systems of the participating centres. The patients with cancer who underestimated CB ranged from 18.62% (for physical CB) to 23.33% (for social CB). They had less advanced cancer, a lower income, were the caregiver's spouse, reported higher levels of family avoidance of communication about cancer, and had female caregivers. The patients' underestimation of CB was significantly related to lower CQoL and higher levels of caregiver depression and anxiety. The current study provides empirical evidence for the link between the underestimation of CB by patients with cancer and compromised caregiving experiences of cancer caregivers. Open family communication about cancer was discussed as one of several practical strategies for decreasing patients' underestimation of CB.     

Reliability and Validity of Turkish Version of the Caregiver Quality of Life Index Cancer Scale

Background: Measuring effects of cancer on family caregivers is important to develop methods which canimprove their quality of life (QOL) . Nevertheless, up to now, only a few tools have been developed to be usedin this group. Among those, the Caregiver Quality of Life Index-Cancer Scale (CQOLC) has met minimumpsychometric criteria in different populations in spite of conflicting results. The present study was conducted toevaluate reliability and validity of CQOLC among Turkish cancer family caregivers. Materials and Methods:The CQOLC was administered to 120 caregivers, along with Beck Depression Inventory (BDI), MedicalOutcomes Study MOS 36- Item Short Form Health Survey (SF-36), State–Trait Anxiety Inventory (STAI), andMultidimensional Scale of Perceived Social Support (MSPSS). Internal consistency and test-retest stability wereused to investigate reliability. Construct validity was examined by using known group method, convergent, anddivergent validity. For the known group method, we hypothesized that CQOLC scores would differ betweendepressed and non-depressed subjects. We investigated convergent validity by correlating scores for CQOLCwith scores for other similar measures including SF-36 and STAI. The MSPSS was completed at the same timeas CQOLC to provide divergent validity. Results: The values for internal consistency and test-retest correlationwere 0.88 and 0.96, respectively. The CQOLC discriminated those who were depressed from those who werenot. Convergent validity supported strong correlations between CQOLC scores and two main component scores(PCS, MCS) in SF-36 although there was a weak correlation between CQOLC and STAI scores. Regardingdivergent validity, the correlation between CQOLC and MSPSS was in the low range, as expected. Conclusions:The Turkish CQOLC is a reliable and valid tool and it can be utilized to determine QOL of family caregivers.     

Quality of life of family caregivers 5 years after a relative's cancer diagnosis: follow-up of the national quality of life survey for caregivers

Background. Although cancer has been considered as a chronic disease for those diagnosed, the long‐term impact of cancer on the family caregivers' quality of life (QOL) remains unknown. Thus, the current study aimed: (a) to characterize family caregivers of cancer survivors, (b) to describe the multidimensional aspects of QOL of family caregivers of cancer survivors, and (c) to identify demographic and caregiving experience factors that may play significant roles in the caregivers' QOL around 5 years after the relative's initial diagnosis. Methods. A total of 1218 caregivers participated in the 5‐year follow‐up nationwide QOL Survey for Caregivers. Demographics and caregiving experiences were measured 2 years post‐diagnosis of their relative's cancer. Multidimensional aspects of QOL were assessed, including mental and physical health, psychological adjustment, and spirituality at 5 years post‐diagnosis. Results. Three groups of caregivers were identified: former caregivers due to the recipients being in remission, former caregivers whose recipients were deceased, and current caregivers. Current caregivers reported worst levels of QOL. Bereaved caregivers reported lower levels of psychological and spiritual adjustment than former caregivers whose recipients were in remission. In addition, caregivers' age and stress were consistent predictors of QOL across three caregiver groups at 5 years post‐diagnosis. Conclusions. The findings help to increase evidence‐based awareness of the long‐term impact of cancer on the family caregivers' QOL. Findings also have implications for developing programs, whereby family caregivers in the various phases of caregivership will benefit by improving their QOL. Copyright © 2010 John Wiley & Sons, Ltd.     

Anxiety,depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient's death

We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses.     

Patient awareness of prognosis, patient-family caregiver congruence on the preferred place of death, and caregiving burden of families contribute to the quality of life for terminally ill cancer patients in Taiwan

Objectives: The main goal of end‐of‐life care is to achieve the best quality of life (QOL) for patients. The purpose of this study was to investigate the impact of (1) the patients' awareness of their prognosis, (2) the extent of patient–family caregiver congruence on the preferences for end‐of‐life care options, and (3) the perceived caregiving burden of family caregivers when they provide end‐of‐life care to their dying relative, on the QOL for terminally ill cancer patients in Taiwan. Methods: A total of 1108 dyads of patient–family caregiver from 24 hospitals throughout Taiwan were one‐time surveyed. Predictors of the QOL were identified by multiple regression analysis. Results: Controlling for the effects of age, financial status, and symptom distress, a novel finding of this study was that the patient awareness of prognosis, patient–family caregiver congruence on the preferred place of death, and the subjective family caregiving burden had a significant impact on the QOL of Taiwanese terminally ill cancer patients. Conclusions: QOL is not only related to the unavoidable decline in physical condition and daily functioning of the dying patient but is also related to domains that, as death approaches, have the potential to show improvement through the efforts of health‐care professionals, such as presenting prognostic information to optimize the patients' understanding and assists them with psychological adjustments, facilitating patient–family caregiver congruence on the end‐of‐life care decision regarding the place of death and lightening the caregiving burden of family caregivers. Copyright © 2008 John Wiley & Sons, Ltd.     

Health-Related Quality of Life (HRQOL) of Gastrointestinal Cancer Caregivers: The Impact of Caregiving

Objective: This study examined the quality of life (QOL) of caregivers for gastrointestinal (GI) cancer patients, andassociated factors. Methods: A cross-sectional study was conducted at three referral hospitals in Klang Valley, Malaysia.A total of 323 pairs of patients and caregivers from the oncology units of these hospitals completed questionnairesin Malay. The QOL of caregivers was measured using The Malay Caregiver Quality of Life questionnaire. Theindependent variables were caregiver and patient factors, care-related factors, the Caregiver Strain Index-Malay, andthe Multidimensional Scale of Perceived Social Support-Malay. Simple and multiple linear regression analyses wereperformed to determine the factors associated with the QOL. Variables with p < 0.05 were considered significant in themultiple analyses. Results: Female caregivers were 68.1% of the total, and 46.4% caregivers were spouses to cancerpatients. Their mean age was 44.50 (13.29) years old. About 51.7% were of Malay ethnicity. The mean score for QOLwas 80.17 (21.58). Being a male caregiver (beta = 5.165, p = 0.011) and of Indian ethnicity (beta = -9.163, p = 0.001)were strongly associated with caregiver QOL. Male patients contributed higher QOL scores for the caregivers comparedto female patients. There was an inverse relationship among caregiving strain, duration of caregiving, and caregiverQOL. Conclusion: The identification of factors that affect QOL will allow healthcare providers to develop appropriateinterventions. It is important that caregivers be in good health so as not to compromise the care they provide to theirpatients.     

The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review

Objective: Hematopoietic stem cell transplant (HSCT) is a demanding procedure with associated physical and psychological sequelae that affects patients and their families. Caregivers to HSCT patients not only have to cope with the life‐threatening nature of the disease and treatment, but they also have care‐giving responsibilities. This study reviews the literature on the psychosocial impact of being a caregiver to a HSCT patient. Methods: A critical review of the literature published before June 2010 was conducted. Databases searched included CINAHL, Medline, PsycInfo, and Academic Search Complete, as well as a comprehensive reference review. Studies that pertained to caregivers of children (under the age of 18) undergoing a HSCT or caregivers to patients with non‐hematological malignancies were excluded. Sixteen quantitative research articles and three qualitative research articles were reviewed and analyzed. Results: Caregiver distress is highest pre‐transplant and decreases over time, and caregivers display distress levels comparable to or higher than patients' reported distress levels. Predictors of caregiver distress include female gender, elevated subjective burden, and higher patient symptom distress. Caregivers reported uncertainty, fear of the future, juggling patients' needs with their own, and difficulties adapting to role changes; however, they also reported positive aspects to care giving, such as personal growth and developing a more positive relationship with the patient. Conclusions: There are many limitations to the current research and future directions should include both members of the dyad to evaluate the reciprocal relation between caregiver and patient variables, as well as theory‐driven research and research with direct clinical applications. Copyright © 2011 John Wiley & Sons, Ltd.     

The emerging role and needs of family caregivers in cancer care

Involvement of family caregivers is essential for optimal treatment of cancer patients in ensuring treatment compliance, continuity of care, and social support, particularly at the end of life. The diagnosis of cancer presents a major crisis not only to the patient but also to the patient's primary caregiver. Caregivers often assume this role under sudden and extreme circumstances, with minimal preparation and uneven guidance and support from the healthcare system. The primary setting for the delivery of care to patients with cancer has shifted from the hospital to the home as a result of increased use of outpatient services for cancer treatment, shortened hospital visits, longer survival,and the trend for caregivers to accommodate patients' desire to be cared for at home for as long as possible. Caring for a family member with cancer poses significant challenges, with considerable psychological and physical consequences for the caregiver. Family caregiving has gained attention in the past decade with growing realization that support for family caregivers benefits the caregiver, the patient, and the healthcare team.This article will attempt to provide an understanding of the multifaceted role of caregivers in cancer care, describe the impact of this role on the caregiver's quality of life, impart an understanding of the caregiver's burden and unmet needs, highlight adaptational requirements of caregivers along the disease trajectory, and describe interventions for providing support to nonmedical persons caring for patients with cancer.     

Anxiety Disorders in Family Caregivers of Breast Cancer Patients Receiving Oncologic Treatment in Malaysia

Background: Anxiety is recognized as a normal psychological reaction of those caring for cancer patients. However, anxiety disorders in caregivers may interfere with their care-giving role and require further clinical attention. Objectives: To determine the prevalence and associated factors of anxiety disorders among caregivers of breast cancer patients receiving oncologic treatment in Kuala Lumpur Hospital. Methodology: A cross-sectional study was conducted on 130 caregiver-patient dyads, recruited by non-random sampling at Kuala Lumpur Hospital. Data were collected in 2 stages: 1) the caregivers were screened for psychological distress using the Depression, Anxiety, Stress, Scale (DASS-21) while other related factors for the patients and their caregivers were obtained; 2) the identified distressed caregivers (n=64) were then administered the Mini International Neuropsychiatric Interview (MINI) to diagnose anxiety disorders. Results: A total of 11.5% (n=15) of the caregivers reported suffering from anxiety disorders. Bivariate analysis found duration of caregiving (OR=3.31; CI=2.21-11.93), shared caregiving (OR=4.07; CI=1.34-12.36), and patients’ treatment type (OR=3.42; CI=1.92-12.76) were significantly associated with anxiety disorders (p value <0.05), with shared caregiving and patient’s treatment type remaining significant using logistic regression (p value < 0.05, R2 = 0.255). Conclusions: Every one in ten of the caregivers in this study had a diagnosable anxiety disorder, associated with certain care-giving factors and patients’ treatment. This should alert clinicians to such risk and indicates psychological support needs for family caregivers.     

Psychometric evaluation of the German Version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS‐P&C‐G) of cancer patients

This study aimed for psychometric validation of the German version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS‐P&C‐G). In‐ and outpatients with lung, urological and gastrointestinal cancer at Heidelberg University Hospital in Germany and in each case one relevant caregiver were asked to complete a set of questionnaires assessing their unmet needs together with distress, depression, anxiety and caregiver strain. In addition, medical data of the patients were collected. Fully completed questionnaires were received from 188 pairs of patients and their caregivers. Using exploratory factor analysis, four domains of unmet needs were identified with an appropriate variance explanation (58.7%) and acceptable (>0.70) internal consistencies (α = 0.95 to 0.76) for each domain. Convergent validity was found with respect to significant positive correlations (>0.40) of the SCNS‐P&C‐G domains with caregivers’ anxiety, depression and strain. Although poorer health status of the patient indicated more unmet caregiver needs, this finding was not consistent for all need domains. Overall, associations were only moderate to weak pointing out the necessity of a separate screening for caregivers’ needs. The findings of this study support that the SCNS‐P&C‐G is an appropriate research instrument to assess caregivers’ needs on different domains throughout the disease trajectory.     

Quality of life of family caregivers at 2 years after a relative's cancer diagnosis

Purpose: Although a growing body of research has documented the quality of life (QOL) of cancer survivors beyond the initial phase of the survivorship, similar knowledge about family caregivers of cancer survivors remains limited. Thus, the current study aimed: (a) to characterize the multidimensional aspects of the QOL of family caregivers of cancer survivors at 2 years after the diagnosis and (b) to predict certain aspects of caregivers' QOL by their demographic and caregiving characteristics. Methods: A total of 1635 caregivers of cancer survivors participated in the nationwide Quality of Life Survey for Caregivers. Multidimensional aspects of QOL were assessed, including mental and physical health, as well as psychological adjustment and spirituality at 2 years post‐diagnosis of their relatives' cancer. Results: Family caregivers reported normal levels of QOL after 2 years post‐diagnosis, except that they were more likely to experience increased awareness of spirituality than do individuals who personally experience a chronic illness. In addition, caregivers' age and income and care‐recipients' poor mental and physical functioning were significant predictors of their QOL at 2 years post‐diagnosis. Conclusions: The findings suggest that younger, relatively poor caregivers who are providing care to relatives with poor mental and physical functioning may benefit from interventions to help in their spirituality and psychological and physical adjustment, 2 years after the initial cancer diagnosis. In addition, older, relatively poor caregivers may benefit from programs to reduce the physical burden of caregiving. These findings have implications for advancing public health research and practice. Copyright © 2009 John Wiley & Sons, Ltd.