Mapping the quality of life and unmet needs of urban women with metastatic breast cancer

Enhancing quality of life and reducing the unmet needs of women are central to the successful management of advanced breast cancer. The objective of this study was to investigate the quality of life and support and information needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Melbourne, Australia. A consecutive sample of 105 women with advanced breast cancer completed a questionnaire that contained the European Organization of Research and Treatment of Cancer Quality of Life Q-C30 and the Supportive Care Needs Survey. Between one quarter and a third of the women reported difficulties with their physical, role and social functioning, and a little over a quarter of the women reported poor global health status. Fatigue was a problem for most women. The highest unmet needs were in the psychological and health information domains. Almost no differences in unmet needs were detected when comparing different demographic and disease characteristics of women. Health care providers should routinely monitor the quality of life and needs of women with advanced breast cancer to ensure that appropriate treatment, information or supportive services are made available.     

癌症患者生活质量调查表的编制及试测

随着癌症患者生存期的延长，癌症患者生活研究越来越引起人们的关注。因此，在引进，修订国外有关ＱＯＬ问卷的同时，编制，评估我国自己的ＱＯＬ问卷将有助于我国在这一年轻领域的研究工本。本文简介了中国癌症化疗患者生活质量调查顺卷的编制，试测及应用情况，初步研究结果表明ＱＬＱ－ＣＣＣ在评价中国癌症化疗患者ＱＯＬ时具有可靠，有效，灵敏及实用等特点。     

Medically related legal needs and quality of life in cancer care: a structural analysis

BACKGROUND: This study investigated the interface of medical and legal systems by empirically identifying and evaluating the relation of medically related legal needs and patient quality of life and by assessing the degree to which these needs were addressed in standard patient care. METHODS: Medically related legal needs were identified in a focus group setting. These needs were subsequently sorted and rated by a sample of 50 mixed-site cancer patients (22 men and 28 women; mean age, 52 years) and subjected to multidimensional scaling and cluster analyses. Participants also rated each need in terms of the extent to which it was met in their medical care and the impact on their quality of life. RESULTS: Participants identified 30 medically related legal needs. Multivariate analyses identified 4 distinct medical-legal domains: Health Care Related, Estate Related, Financial, and Employment Related. Participants rated these domains as exerting a significant impact on quality of life. Patients reported that that these needs were not met by their current medical or supportive care. CONCLUSIONS: The present study identified a range of medically related legal needs of cancer patients. Despite their importance to patient quality of life, these needs were not met by standard medical and supportive care. Findings underscored the need to integrate legal resources into cancer care as an important component of interventions that enhance patient quality of life.     

Association between unmet needs and quality of life in hospitalised cancer patients no longer receiving anti‐cancer treatment

Assessing the quality of life and unmet needs of cancer patients is an integral part of palliative care. This cross‐sectional study sought to determine whether there is an association between quality of life and unmet needs, anxiety and depression in cancer patients who are no longer receiving anti‐cancer treatment. The sample consisted of 93 patients from the oncology department at the University Hospital in Ostrava for whom further cancer treatment had been terminated as ineffective in halting the progression of their cancer. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ‐C30), the Patient Needs Assessment in Palliative Care (PNAP) questionnaire, and the Hospital Anxiety and Depression Scale (HADS) were used to collect data. The overall quality of life score was quite low at 46. Most unmet needs were defined in terms of physical, psychological or spiritual needs. Correlations were found between impaired quality of life and lower Karnofsky scores (r = 0.50); increased physical (r = 0.52), psychological (r = 0.44) and spiritual (r = 0.36) needs; and higher levels of anxiety (r = ?0.30) and depression (r = ?0.68). Effective management of patients' physical (pain, fatigue and depression), psychological and spiritual needs may improve their quality of life.     

Met and unmet nursing care needs in men with prostate cancer. An explorative study. Part II

Men with prostate cancer ( n = 11) were interviewed during an in-patient period at a urological clinic, about their experiences of met and unmet needs from health professionals. Their perception of quality of life and sense of coherence were also assessed. The findings were analysed from a phenemenological-hermeneutic perspective and interpreted within the concept of transition. It was interpreted that objective functional health needs were mostly met by health professionals and subjective existential needs were mostly not met. The analysis revealed patients as passive or active receivers of care. Passive receivers were explicitly and implicitly stating unmet needs, or explicitly stating satisfaction with nursing care at the same time as implicitly contradicting, referring to their needs as bagatelles, unimportant, whereas active receivers talked about their needs explicitly with the staff and did not state implicit unmet needs. This suggests that nurses need to be aware of and have sensitive ears to undertones in statements and actively seek for patients' needs. The most important nursing care areas seemed to be to provide solutions to physical problems together with staff support including information, and acting to increase confidence in staff and staff availability. This encourages patients, wives and families, in co-operation, towards a healthy exit of transition.     

Relationship between survivorship care plans and unmet information needs,quality of life,satisfaction with care,and propensity to engage with,and attend,follow-up care

Background

The impact of survivorship care plans (SCPs) on the proximal and distal outcomes of adult and childhood cancer survivors, and parent proxies, is unclear. This study aimed to determine the relationship between SCP receipt and these outcomes.

Methods

A cross-sectional survey of adult and childhood cancer survivors (and parent proxies for survivors aged younger than 16 years) across Australia and New Zealand was conducted. Multivariate regression models were fitted to measure the impact of SCP receipt on proximal (unmet information needs and propensity to engage with, and attend, cancer-related follow-up care) and distal outcomes (quality of life and satisfaction with cancer-related follow-up care) with control for cancer history and sociodemographic factors.

Results

Of 1123 respondents, 499 were adult cancer survivors and 624 were childhood cancer survivors (including 222 parent proxies). We found that SCP receipt was predictive of greater attendance at, and awareness of, cancer-related follow-up care (adult: odds ratio [OR], 2.46; 95% CI, 1.18–5.12; OR, 2.38; 95% CI, 1.07–5.29; child/parent: OR, 2.61; 95% CI, 1.63–4.17; OR, 1.63; 95% CI, 1.06–2.50; respectively). SCP receipt also predicted fewer unmet information needs related to “follow-up care required” and “possible late effects” (adult: OR, 0.44; 95% CI, 0.20–0.96; OR, 0.29; 95% CI, 0.13–0.64; child/parent: OR, 0.46; 95% CI, 0.30–0.72; OR, 0.57; 95% CI, 0.38–0.85; respectively). In terms of distal outcomes, SCP receipt predicted a better global quality of life for adult cancer survivors (β, 0.08; 95% CI, −0.01–7.93), proxy-reported health-related quality of life (β, 0.15; 95% CI, 0.44–7.12), and satisfaction with follow-up care for childhood cancer survivors (OR, 2.93; 95% CI, 1.64–5.23).

Conclusions

Previous studies have shown little impact of SCPs on distal end points. Results suggest that SCPs may be beneficial to cancer survivors’ proximal and distal outcomes.     

McGill生活质量量表在中国内地癌症患者中的信效度检验

目的探究McGill生活质量量表评价中国大陆癌症患者生活质量的信度与效度。方法运用翻译后的McGill生活质量问卷（MQOL-C）调查同济医院肿瘤中心癌症患者的生活质量,通过检测内部一致性信度、内容效度及结构效度评价翻译后量表的信效度。结果 63例癌症患者参与研究。MQOL-C量表各个维度的克隆巴赫系数在0.602-0.828之间,内部一致性较好。除了项目1外,主成分分析提取了4个公因子,较好地解释了量表的4个维度共15个项目的内容,具有良好的结构效度。结论 MQOL-C版本适用于中国内地癌症患者的生活质量调查。     

Impact of newly diagnosed breast cancer on quality of life among Chinese women

Background Being diagnosed with breast cancer is a very stressful event that has a profound impact on multiple aspects of a patient’s daily life. Little is known about the quality of life (QOL) of Chinese women with newly diagnosed breast cancer. Methods The authors evaluated QOL in 2,236 Chinese women with newly diagnosed breast cancer who were recruited into the Shanghai Breast Cancer Survival Study between April 1, 2002 and March 31, 2004. Patients’ QOL was assessed after cancer diagnosis (median time 6.4 months; range 3.6–11.1 months) by using the General Quality of Life Inventory. Multiple linear regression models were used to analyze the associations of QOL outcomes with medical and socio-demographic factors. Results Patients showed significantly worse overall QOL and perceived health status than healthy women, reflected mainly by lower QOL scores in physical and psychological well-being domains. Completion of radiotherapy, ever use of tamoxifen, being underweight, having an increased number of chronic diseases, and low household income were significantly associated with lower overall QOL scores after adjusting for other factors. Age at diagnosis was inversely associated with physical well-being, positively associated with material well-being, and had minimal influence on overall QOL. Stage of disease, chemotherapy, and education were only associated with certain domains, but had no influence on overall QOL. Estrogen receptor/progesterone receptor status and type of surgery or immunotherapy did not appear to be associated with QOL. Conclusions The findings of the present study provide important information on QOL and their correlates among Chinese women with newly diagnosed breast cancer and are helpful in developing treatment strategies accordingly.     

The needs of patients with advanced, incurable cancer

Background:

Limited research has investigated the specific needs of patients with advanced incurable cancer. The aim of this study was to describe the prevalence of perceived needs among this population.

Methods:

Medical specialists from two regions in New South Wales, Australia, identified patients with advanced, incurable cancer, who were estimated to have a life expectancy of <2 years and were not receiving formal palliative care. Of the 418 eligible patients, 246 (59%) consented to participate. Consenting patients completed the Needs Assessment for Advanced Cancer Patients questionnaire, which has demonstrable validity and reliability. Patients'' perceived needs were assessed across the seven domains of the questionnaire: psychological, daily living, medical communication and information, symptom related, social, spiritual and financial needs.

Results:

Patients identified the greatest areas of need in relation to psychological and medical communication/information domains. Patients'' specific needs were highest in dealing with a lack of energy and tiredness, coping with fears about the cancer spreading, and coping with frustration at not being able to do the things they used to do.

Conclusion:

This study indicates that patients with advanced, incurable cancer have high levels of unmet needs, especially in relation to the areas of psychological and medical communication/information needs. The data have the potential to guide the development of interventions aimed at meeting the current unmet needs of patients with advanced, incurable cancer.     

Parental cancer: Health‐related quality of life and current psychosocial support needs of cancer survivors and their children

The presence of cancer and additional parental responsibilities can increase strain for individual patients as well as for their children. The construct of health‐related quality of life (HRQL) is appropriate to measure a combination of physical, mental and social consequences as a result of disease. However, previous research has merely focused on symptom checklists. This study addresses the following questions: (i) does HRQL in children and their parents with cancer differ compared to the general population? (ii) Are there any variables that are associated with HRQL in children? (iii) What are current psychosocial support needs? A population‐based survey of 976 survivors (<6 years post diagnosis) with minor children between 6 and 18 years (n = 1,449) was conducted with two German cancer registries. HRQL was assessed using SF‐8 (survivors) and Kidscreen (children). The results were compared to normative populations, and predictors associated with HRQL in children were evaluated within a multilevel model. We found that the HRQL in children was better compared to the norm. Only children with support needs had worse HRQL. Older age, having a mother with cancer, having a parent not living together with a partner, and worse parental physical and mental health influenced HRQL in children. Illness characteristics were irrelevant. Even with a mean of 3.5 years after diagnosis, survivors had lower physical and mental health compared to the norm. Our findings reinforce the need for health professionals to pay attention to younger patients and their children. Even years after diagnosis, life might not have returned to normal.     

Assessing the unmet supportive care needs of newly diagnosed patients with cancer

Adequate monitoring in cancer control needs to include measures of psychosocial outcomes so as to take account of the totality of the felt cancer experience. There is a need to know whether the experience of cancer is changing, as well as a need for tools to identify where supportive care interventions or services could be targeted to good effect. The aim of this study was to investigate the utility of using a telephone-administered survey to identify the unmet needs of cancer patients. Participants were identified from a statewide population-based cancer registry following an episode of hospitalized care in Victoria (Australia). Of the 506 eligible patients, 236 completed a telephone adaptation of the Supportive Care Needs Survey-Short Form (SCNS-SF31). Sampling from the cancer registry was shown to provide timely contact with patients. Results from the survey indicated that perceived needs for this newly diagnosed group of cancer patients were mostly in the area of information provision. Results also showed that some socio-demographic and disease-specific variables affected the level of perceived unmet needs. Overall, this study indicated that registry-based sampling was practical and the telephone adaptation of the SCNS-SF31 provided a reliable method to explore the unmet needs of newly diagnosed patients with cancer.     

A mixed-methods exploration of the quality of life of Chinese breast cancer survivors

ABSTRACT

Quality of life (QOL) in cancer survivorship is a multidimensional and subjective concept, which represents the personal sense of the physical, psychological, social, and spiritual consequences of cancer diagnosis and its treatment. This mixed method study aimed to explore the QOL of Chinese breast cancer survivors. Participants were recruited from a cancer self-help organization in the central area of China. QOL was assessed using the QOL–Cancer Survivor Scale and subsequently elicited by in-depth interviews. Results showed that participants had good overall QOL but with unfavorable aspects in psychological and social well-being. Interview data revealed that participants seldom attended spiritual activities. Instead, they actively reconnected with their “self” to create a positive meaning from their cancer experience. Understanding how Chinese breast cancer survivors perceive QOL is important for health professionals to address survivorship in this population.     

Measuring quality of life

This article provides a brief review of how quality of life (QOL) studies can contribute to the care of cancer patients. The problem of actually defining QOL is considered, and it is emphasized that quality is the presence of positive factors not merely the absence of negative aspects of life. The information that can be gained from using QOL instruments and how this is achieved is outlined. These studies have important implications for health care professionals for side-effects of treatment are often identified that can be helped by nursing intervention. Finally, specific examples of how the implementation of QOL studies has helped modify treatment and patient care are given     

An exploratory study into the unmet supportive needs of breast cancer patients

This study explores the unmet supportive needs of people with breast cancer attending a London NHS Foundation Trust Hospital. A mixed methods approach was used. One hundred and one patients completed a specially designed questionnaire focusing on their concerns in the previous week, and whether they felt they had been offered sufficient support from health professionals. Seven semi‐structured interviews were then completed in order to gain insight into the need for future developments of services for patients with breast cancer. Pearson's chi‐squared analysis was used to examine whether symptoms reported within 1 year of diagnosis differed from symptoms reported more than 1 year post diagnosis. Fatigue was the most common concern expressed (53%) with no significant difference between the two groups. Emotional concerns and pain were also highly reported (35% and 36%). Only 32% of the questionnaire participants reported that they had been offered support in dealing with their concerns. Most participants (65%) would have liked more support from the healthcare team. From the interviews it was clear that whilst there are gaps in services available, participants were not aware of the range of services already available for people with breast cancer. The results of this study have helped to inform service development, particularly around the management of fatigue.     

Religiosity and its relation to quality of life in Christian Orthodox cancer patients undergoing chemotherapy

Objectives: The first objective of the current observational study was to assess the levels of religiosity in Greek Christian Orthodox cancer patients receiving chemotherapy. The second objective was to evaluate the associations between religiosity and quality of life (QoL), an endpoint of considerable importance in clinical cancer research and practice. Method: One hundred eighteen adult outpatients with solid tumors, who consented to participate, were administered the Systems of Belief Inventory (SBI‐15R) and the European Organisation for Research and Treatment of Cancer (EORTC QLQ‐C30) questionnaire. Results: The analysis revealed high scores on religiosity, especially among female patients, who reported significantly higher levels of religious beliefs and practices as well as perceived social support provided by the religious community than did their male counterparts. Of all EORTC QOL‐C30 subscales, only global QoL was found to be significantly associated with the SBI‐15R religious beliefs subscale. The analysis revealed no significant correlations between the SBI‐15R social support subscale and all QoL subscales. Conclusions: The current study reported high levels of religiosity among Greek Christian Orthodox cancer patients. However, levels of religiosity were only weakly associated with patients' QoL. The SBI‐15R appeared to be a well‐accepted and reliable tool, potentially useful for future research in Greek settings. Wide‐scale studies from the same and diverse religious and cultural backgrounds are needed to clarify further the connections between religiosity, QoL, coping, and other health outcomes with the aim to devise appropriate multicomponent interventions to enhance patients' QoL. Copyright © 2008 John Wiley & Sons, Ltd.     

Spirituality,quality of life,psychological adjustment in terminal cancer patients in hospice

The purpose of this study was to show the different components of spirituality in the last few weeks of life for advanced cancer patients admitted to hospice and to evaluate quality of life (QoL), pain, anxiety, depression and psychological adjustment to cancer. One hundred and fifteen patients were interviewed with a series of rating scales: the Functional Assessment of Chronic Illness Therapy – Spiritual Well‐Being Scale, the Hospital Anxiety and Depression Scale, the Visual Analogue Scale for pain, the Brief Coping Orientation to Problem Experienced and the Functional Assessment of Cancer Therapy Scale – General Measure. Workers and single patients with higher education level showed a worse QoL. Moreover, anxiety and pain were negatively associated with QoL, while spirituality and ‘Instrumental Support’ coping style were positively associated with QoL. In the Italian sample, it was observed that when patients are close to death, faith is a more important component of spirituality than meaning/peace. This study confirms that QoL could be related to physical and psychological symptoms, and this reiterates the importance of faith in end‐of‐life care.