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.     

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.     

Impact of cancer patients' disease awareness on their family members' health‐related quality of life: a cross‐sectional survey

Background: Conflicting results exist concerning disease knowledge and patients' quality of life (QOL) while there is very limited information concerning the impact of awareness on caregivers' health‐related quality of life. The aim of this study was to explore the influence of disease awareness on both cancer patients and their caregivers during the period of chemotherapy. Materials and Methods: Two hundred and twelve cancer patient–caregiver dyads completed the QOL SF‐36 instrument on the day of chemotherapy. Hierarchical multiple linear regression analysis was performed. Results: Physical component parameters were significantly higher in the family members (p<0.001), while their mental component was lower than cancer patients. Younger patients, females, and of higher educational status were more frequently aware of their disease status while patients with gastrointestinal cancer were more likely to be unaware. Disease knowledge seems to exert a negative influence on patients' physical and mental parameters while lack of awareness affects adversely caregivers' vitality, social function, emotional role, and mental health. Multiple regression analysis confirmed disease awareness affected reversely patients' and caregivers' mental QOL while the counter‐influence of the dyad was revealed. Conclusions: A holistic approach to cancer management should be followed. Patient's treatment is the major medical concern, but health system and professionals should be involved in the mental and physical support of caregivers as well. Tailored interventions that focus on the support of the dyad patient–caregiver should be developed. Copyright © 2010 John Wiley & Sons, Ltd.     

Family resilience and psychological well‐being among Chinese breast cancer survivors and their caregivers

Walsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience and psychological well‐being among Chinese breast cancer survivors and their caregivers. Therefore, this study aimed to examine the direct and indirect relationships between family resilience, breast cancer survivors' post‐traumatic growth (PTG), quality of life (QOL), and their principal caregivers' caregiver burden. A total of 108 breast cancer survivors/principal caregivers pairs completed a cross‐sectional questionnaire survey in a comprehensive cancer of a public hospital in Shandong Province, China. The structural equation modelling (SEM) results showed that family resilience had direct and indirect effects on QOL and caregiver burden, and it was positively related to the PTG of the survivors. The survivors' PTG was positively related to their QOL, and their QOL was negatively associated with caregiver burden. Therefore, a better understanding of how family resilience contributes to PTG and QOL of the survivors and caregiver burden could help clinicians tailor interventions to enhance interventions aimed at improving both survivors' and caregivers' well‐being.     

Patient's perceived need and psychological distress and/or quality of life in ambulatory breast cancer patients in Japan

Objective: A needs assessment can be used as a direct index of what patients perceive they need help with. The purposes of this study were to investigate the association between patients' perceived needs and psychological distress and/or quality of life (QOL) and to clarify the characteristics of patients with a high degree of unmet needs. Methods: Randomly selected ambulatory female patients with breast cancer participated in this study. The patients were asked to complete the Short‐form Supportive Care Needs Survey questionnaire, which covers five domains of need (health system and information, psychological, physical, care and support, and sexuality needs); the Hospital Anxiety and Depression Scale; and the European Organization for Research and Treatment of Cancer QLQ‐C 30. Results: Complete data were available for 408 patients. The patients' needs were significantly associated with both psychological distress (r=0.63, p<0.001) and QOL (r=?0.52, p<0.001). A multiple regression analysis revealed that employment status (without full‐time /part‐time job), duration since diagnosis (less than 6 months), advanced stage, and a lower performance status were significantly associated with higher total needs. Only sexuality needs were significantly associated with a younger age, while the other domains were significantly associated with duration since diagnosis, advanced stage, and a lower performance status. Conclusions: Moderate to strong associations exist between patients' needs and psychological distress and/or QOL. The characteristics associated with patients' needs are multi‐factorial, and interventions to respond to patients' needs may be one possible strategy for ameliorating psychological distress and enhancing QOL. Copyright © 2010 John Wiley & Sons, Ltd.     

End-of-life care in Italy: personal experience of family caregivers. A content analysis of open questions from the Italian Survey of the Dying of Cancer (ISDOC)

Objective: This study aims at describing the emotional and practical experience of a representative sample of Italian non‐professional caregivers when caring for a terminally ill family member and is part of the ‘Italian Survey of the Dying of Cancer’, which involved 2000 adult cancer deaths representative of the whole country. Methods: Information on patients' experience was gathered from non‐professional caregivers by an interview. A specific question was asked about the caregivers' emotional and practical experiences while assisting a terminally ill relative. A content analysis of the open question on caregivers' perceptions was performed on transcribed answers. Three researchers independently generated categories. Subsequently, areas where they differed were reconsidered and an interpretation was agreed upon. Results: Valid interviews were obtained from 1231 non‐professional caregivers. Answers were classified according to the perception of the experience as positive (33.1%), negative (65.1%) or neutral (1.8%). Conclusion: Assisting a family member with cancer in his/her last three months of life is a very strong physical and mental stress for the caregiver. In some cases, this experience is nevertheless perceived as an evolution chance. Health‐care providers should need to develop programs to ensure that family caregivers' needs for information and support are given great importance. Copyright © 2008 John Wiley & Sons, Ltd.     

A prospective study of posttraumatic growth as assessed by self-report and family caregiver in the context of advanced cancer

Objective: The study of posttraumatic growth (PTG) has burgeoned over the last decade, particularly in the area of oncology. The aims of the study were to: (1) describe PTG in patients with hepatobiliary carcinoma, (2) examine agreement between the patient and caregiver measures of patient PTG, and (3) test the associations between PTG and other psychological factors and clinically relevant outcomes. Methods: Two hundred and two patients with hepatobiliary carcinoma completed a battery of standardized questionnaires that measured PTG, depressive symptoms, optimism, expressed emotion, and quality of life (QOL). A subsample of family caregivers also completed ratings of patient PTG, using the Posttraumatic Growth Inventory (PTGI), as well as their own PTG. Results: No significant increase in the patients' PTG was observed between diagnosis and 6‐month follow‐up with the exception of the Relating to Others subscale of the PTGI. PTG was not found to be associated with QOL or depressive symptoms. At diagnosis, the agreement between the patients' PTG and family caregivers' rating of patient PTG was found to be high (ICC=0.34–0.74, p=0.001–0.05). PTG was found to be significantly associated with optimism (r=0.20 p=0.02–0.05) and traumatic life events reported in the past 3 years, including recent losses (F(1, 52)=6.0, p=0.02) and severe physical injury (F(1, 52)=5.5, p=0.02). Caregivers reported PTG as a result of their loved one's diagnosis of cancer. Conclusion: Preliminary results suggest that PTG is relatively stable over the first 6 months after diagnosis and changes as a result of a diagnosis of cancer were reported, and possibly observed, by others. Family caregivers also experience PTG as a result of their loved one's diagnosis of advanced cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation

Objective: Begin to test the psychometric properties of a measure designed to capture the multi‐dimensional supportive care needs of cancer caregivers: the Supportive Care Needs Survey—Partners and Caregivers (SCNS‐P&C). Methods: Draft SCNS‐P&C items were developed with reference to the literature and existing instruments and reviewed for face and content validity. The final SCNS‐P&C was then completed by 547 cancer caregivers. Psychometric analyses conducted included principal factor analysis, internal consistency, and construct validity through the known‐group approach. Results: Factor analysis revealed four domains of needs: Health Care Service Needs, Psychological and Emotional Needs, Work and Social Needs, and Information Needs, with Cronbach's α coefficients ranging from 0.88 to 0.94. Construct validity of the SCNS‐P&C was partially supported. Across all domains, individuals with anxiety or depression were more likely to report at least one unmet moderate or high need in comparison to non‐anxious or non‐depressed participants. A greater proportion of younger participants experienced at least one unmet moderate or high need within the Psychological and Emotional Needs and Work and Social Needs domains. Proportion of reported unmet needs varied across cancer types for the Health Care Service Needs and Information Needs domains. Conclusions: The SCNS‐P&C has the potential to comprehensively assess the range of caregivers' supportive care needs, across the illness trajectory. Analyses supported the tool's internal consistency and construct validity. The SCNS‐P&C can be used by researchers and clinicians to determine caregivers' unmet needs, prioritise health‐care resources, and tailor supportive cancer care services accordingly. Copyright © 2010 John Wiley & Sons, Ltd.     

The association between individual attachment patterns,the perceived social support,and the psychological well‐being of Turkish informal caregivers

Background: This study aimed to investigate the relations among the psychological well‐being (i.e. depression and state/trait anxiety levels), attachment patterns (i.e. secure, ambivalent, avoidant), and the perceived social support from family/friends/significant others of caregivers of cancer patients in Turkey. Methods: Fifty‐one caregivers of adult cancer patients were recruited from the oncology outpatient clinic of the Marmara Medical School Hospital in Istanbul. Caregivers were assessed with the Adult Attachment Scale, the Beck Depression Inventory, State–trait Anxiety Inventories, and the Multidimensional Scale of Perceived Social Support. Results: Stepwise multiple regression analysis indicated that depression was predicted by ambivalent attachment and the perceived social support from family. The support from significant others was the significant predictor of trait anxiety and the caregivers' ambivalent attachment score was the significant predictor of state anxiety. Conclusions: We assert that ambivalent attachment pattern could confer a vulnerability to psychological distress in cancer caregivers. Assessing the psychological experiences and needs of caregivers and being aware of possible risk factors (such as attachment patterns) and protective factors (social support network) for depression and anxiety might be helpful for successful programmes and interventions that support the caregivers of cancer patients. Copyright © 2009 John Wiley & Sons, Ltd.     

Development and usability testing of a web‐based self‐management intervention for oral cancer survivors and their family caregivers

Oral cancer (OC) survivors experience debilitating side effects that affect their quality of life (QOL) and that of their caregivers. This study aimed to develop and evaluate a dyadic, web‐based intervention to improve survivor self‐management and survivor/caregiver QOL. A qualitative needs assessment (semi‐structured interviews) with 13 OC survivors and 12 caregivers was conducted to discern information and support needs as well as preferences regarding website features and tools. Results using Grounded Theory analysis showed that OC survivors and caregivers: (1) want and need practical advice about managing side effects; (2) want to reach out to other survivors/caregivers for information and support; and (3) have both overlapping and unique needs and preferences regarding website features. Usability testing (N = 6 survivors; 5 caregivers) uncovered problems with the intuitiveness, navigation and design of the website that were subsequently addressed. Users rated the website favourably on the dimensions of attractiveness, controllability, efficiency, intuitiveness and learnability, and gave it a total usability score of 80/100. Overall, this study demonstrates that OC survivors and caregivers are interested in using an online programme to improve QOL, and that providing tailored website content and features based on the person's role as survivor or caregiver is important in this population.     

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.     

Impact of delirium and recall on the level of distress in patients with advanced cancer and their family caregivers

BACKGROUND:

Delirium has been the most frequent neuropsychiatric complication in patients with advanced cancer. This exploratory study aimed to determine the proportion of patients who were able to recall their experience of delirium and the level of distress experienced by patients, family caregivers, and healthcare professionals.

METHODS:

Patients with advanced cancer who had completely recovered from an acute delirium episode, had Memorial Delirium Assessment Scale score <13, and had a family caregiver present during the delirium were studied. Patients were given the Delirium Experience Questionnaire. Patients' and family caregivers' demographics, and the frequency and distress associated with different delirium symptoms were also collected. Bedside nurses and palliative care specialists reported the frequency of recalled delirium symptoms and their distress score.

RESULTS:

A total of 99 patient/family caregiver dyads participated in the study. The main identified causes for delirium were opioids, infection, brain metastases, hypercalcemia, and dehydration. There were 73 patients (74%) who remembered the episode of being delirious, with 59 of 73 patients (81%) reporting the experience as distressing (median distress level of 3). The median overall delirium distress score was higher in family caregivers (median, 3; 25%‐75% quartile, 2‐4) than in patients (median, 2; 25%‐75% quartile, 0‐3) (P = .0004). Bedside nurses and palliative care specialists expressed low median overall delirium distress scores (median, 0; 25%‐75% quartile 0‐1).

CONCLUSIONS:

The majority of patients with advanced cancer recalled their experience of delirium, causing moderate to severe distress in both patients and family caregivers. Appropriate interventions to reduce this distress are needed. Cancer 2009. © 2009 American Cancer Society.     

Caregivers' anxiety and self‐efficacy in palliative care

MYSTAKIDOU K., PARPA E., PANAGIOTOU I., TSILIKA E., GALANOS A. & GOULIAMOS A. (2012) European Journal of Cancer Care 22 , 188–195 Caregivers' anxiety and self‐efficacy in palliative care This study examined the relationship between caregivers' anxiety supporting a patient with advanced cancer and self‐efficacy and their socio‐demographic characteristics, and then whether these variables could influence their self‐efficacy. One hundred and seven caregivers of advanced cancer patients participated in the study and completed the Greek versions of the State–Trait Anxiety Inventory (STAI) and the General Perceived Self‐efficacy Scale (GSE). Significant comparisons were found between State anxiety and female gender (P= 0.009), cohabitation (P= 0.002) and relationship with the patient (P= 0.004); statistically significant associations were found between State, Trait anxiety and self‐efficacy scores of caregivers (P < 0.0005 respectively). A multiple regression model (enter method) showed women (P= 0.005), spouses (P= 0.01) and self‐efficacy (P= 0.02) as the significant predictors of State anxiety. Furthermore, self‐efficacy seemed to be the strongest contributor of trait anxiety (P < 0.0005). Female caregivers and spouses of advanced cancer patients experience more state anxiety levels than men and other caregivers respectively. In addition, caregivers with low self‐efficacy are more likely to have elevated anxiety scores than self‐efficacious caregivers. These findings can help healthcare professionals focus on some problems common to caregivers of cancer patients and plan appropriate interventions.     

Objective burden,resources, and other stressors among informal cancer caregivers: a hidden quality issue?

A great deal of clinical cancer care is delivered in the home by informal caregivers (e.g. family, friends), who are often untrained. Caregivers' context varies widely, with many providing care despite low levels of resources and high levels of additional demands. Background: Changes in health care have shifted much cancer care to the home, with limited data to inform this transition. We studied the characteristics, care tasks, and needs of informal caregivers of cancer patients. Methods: Caregivers of seven geographically and institutionally defined cohorts of newly diagnosed colorectal and lung cancer patients completed self‐administered questionnaires (n = 677). We combined this information with patient survey and chart abstraction data and focused on caregivers who reported providing, unpaid, at least 50% of the patient's informal cancer care. Results: Over half of caregivers (55%) cared for a patient with metastatic disease, severe comorbidity, or undergoing current treatment. Besides assisting with activities of daily living, caregivers provided cancer‐specific care such as watching for treatment side effects (68%), helping manage pain, nausea or fatigue (47%), administering medicine (34%), deciding whether to call a doctor (30%), deciding whether medicine was needed (29%), and changing bandages (19%). However, half of caregivers reported not getting training perceived as necessary. In addition, 49% of caregivers worked for pay, 21% reported poor or fair health, and 21% provided unpaid care for other individuals. One in four reported low confidence in the quality of the care they provided. Conclusions: Much assistance for cancer patients is delivered in the home by informal caregivers, often without desired training, with a significant minority having limited resources and high additional demands. Future research should explore the potentially high yield of addressing caregiver needs in improving quality of cancer care and both survivors' and caregivers' outcomes. Copyright © 2010 John Wiley & Sons, Ltd.     

Disruptions in the organization of meal preparation and consumption among older cancer patients and their family caregivers

Objectives: The purpose of this paper is to analyze the social organization of caring as gendered work as it relates to meal preparation and consumption activities surrounding older adult cancer patients and their caregivers. Methods: Qualitative methods consisting of in‐depth, semi‐structured, face‐to‐face interviews with 30 older cancer patients (17 women and 13 men aged 68–90) and their caregivers were conducted separately. Participants were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancer. Results: Major findings were that both patients and caregivers experienced distress surrounding food preparation and mealtime activities, and these varied according to the gender of both patients and caregivers and the relationship that existed between patients and caregivers. Of particular note, female patients experienced distress over not being able to fully participate in meal planning and cooking activities that were central to their self‐identity. Related to this, male spouses experienced frustration over not being able to engage in cooking activities that met their wives' expectations. Female caregivers expressed tremendous discontent that the one they were caring for did not eat like they ‘should’. Discussion: Matters related to the organization of meals and food consumption activities may be a source of significant distress for patients and caregivers. Further research and greater attention from health care providers are warranted to evaluate the extent of such distress. Copyright © 2010 John Wiley & Sons, Ltd.     

Psychological distress and quality of life of partners of individuals with familial adenomatous polyposis

Objective: Familial adenomatous polyposis (FAP) is a genetic condition characterized by the development of multiple adenomas in the colorectum that could lead to colorectal cancer. Our aim was to assess levels and predictors of psychological distress and quality of life (QOL) among partners of FAP‐patients. Methods: A nationwide, cross‐sectional survey using validated self‐report questionnaires assessing psychological distress and QOL. Results: One hundred and twenty‐nine partners completed the questionnaire (84% response rate), 30% of whom reported moderate‐to‐severe levels of distress. The partners' distress was associated significantly with the patients' distress, having children, and feelings of guilt. Fifty‐seven percent of the partners with moderate‐to‐severe distress levels had received professional psychosocial support. Partners did not differ significantly from the general population in QOL. However, 9–21% reported that FAP had affected their work, leisure time activities, and relationships. Conclusions: Clinicians should be particularly alert for heightened distress levels in partners of patients who are themselves distressed, and among those with children. Copyright © 2010 John Wiley & Sons, Ltd.     

Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach

CHARLIER C., PAUWELS E., LECHNER L., SPITTAELS H., BOURGOIS J., DE BOURDEAUDHUIJ I. & VAN HOOF E. (2012) European Journal of Cancer Care Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach The transition from breast cancer patient to survivor is associated with many treatment‐related and psychosocial factors, which can influence health behaviour and associated needs. First, this study aimed to identify clusters of treatment‐related and psychosocial factors among breast cancer survivors. Second, clusters' physical activity levels and care needs for physical activity were evaluated. Breast cancer survivors (n= 440; 52 ± 8 years) (3 weeks to 6 months post treatment) completed self‐reports on physical and psychological symptoms; illness representations; social support and coping; physical activity and care needs for physical activity. Analyses identified four clusters: (1) a low distress‐active approach group; (2) a low distress‐resigned approach group; (3) a high distress‐active approach group; and (4) a high distress‐emotional approach group. Physical activity levels were higher in the low distress groups than in the high distress‐emotional approach group. However, women with low distress and an active approach reported equal care needs for physical activity than women with high distress and an emotional approach. These findings suggest that care needs for physical activity are unrelated to distress and actual physical activity levels. The results emphasise the importance of screening for needs and provide a framework supporting the referral of breast cancer survivors to tailored interventions.     

A couples intervention for patients facing advanced cancer and their spouse caregivers: outcomes of a pilot study

Objective: The primary objective of this study was to evaluate the effectiveness of a couples intervention in improving marital functioning in advanced cancer patients and their spouse caregivers. A secondary objective was to determine its impact on other symptoms of psychosocial distress and its feasibility and acceptability as a clinical intervention. Methods: Using a one‐arm pre‐ and post‐intervention prospective design, 16 couples were provided 8 weekly sessions of Emotionally Focused Couple Therapy, modified and manualized for the cancer population. Subjects' marital functioning (Revised Dyadic Adjustment Scale [RDAS]), symptoms of depression (Beck Depression Inventory‐II [BDI‐II]), and hopelessness (Beck Hopelessness Scale) were assessed through self‐report at T0 (baseline), T1 (after four sessions), T2 (after eight sessions), and T3 (3 months post‐intervention follow‐up). Results: RDAS scores improved from T0 to T2, with 87.5% of the couples showing some improvement (0.5–5 points) or significant improvement (>5 points) in marital functioning and 68.8% scoring in the non‐distressed range (?48 RDAS). At T3, 60% of the couples (n=15) continued to score in the non‐distressed range on the RDAS. BDI‐II scores were significantly higher for patients than for caregivers. There was a significant reduction in the mean BDI‐II score from T0 to T3 in all subjects (n=30). This reduction was more significant for the patients (n=15). Conclusions: Providing support to couples at this challenging time may result in improved marital functioning and an opportunity for relational growth during end‐stage cancer. This study serves as the first step in the development of an empirically validated intervention for couples. Copyright © 2008 John Wiley & Sons, Ltd.     

Comparison of patient and family assessments of quality of life of terminally ill cancer patients in Japan

Objective: This study examined the extent and the nature of agreement on health‐related quality of life (QOL) assessments between terminally ill cancer patients and their primary family caregivers in Japan, using a multidimensional QOL instrument including psychosocial and spiritual domains. Methods: The Functional Assessment of Chronic Illness Therapy‐Spiritual well‐being questionnaire was used to assess patients' QOL. Study subjects were inpatients of a palliative care unit (PCU), outpatients who applied for admission to the PCU, and their primary family caregivers. Results: QOL ratings were obtained from 102 of 197 eligible patient–caregiver dyads. A moderate level of patient–family concordance on patients' overall QOL as well as families' underestimation of patients' QOL were observed. Families reported on observable domains of patients' QOL more reliably and assessed subjective aspects, such as psychospiritual concerns less accurately. Families tended to underrate the patients' social aspect of QOL, whereas most patients gave the highest rating on support from their families. The spiritual domain, particularly regarding faith, showed the least agreement. The size of the systematic bias between patient and family assessments on the patients' QOL was moderate (>0.50). Conclusions: Families' limited ability to assess psychosocial and spiritual aspects of patients' QOL may suggest the need for better approaches or measures to assess these aspects of a patient's life. The systematic bias was larger than in earlier studies. Further investigation is needed to identify factors affecting patient–family discord on QOL assessments to guide effective interventions to enhance patient–caregiver agreement. Copyright © 2010 John Wiley & Sons, Ltd.