Meeting the support and information needs of women with advanced breast cancer: a randomised controlled trial

Addressing psychosocial and quality of life needs is central to provision of excellent care for people with advanced cancer. This study tested a brief nurse-delivered intervention to address the needs of urban women with advanced breast cancer. This study was conducted at four large urban hospitals in Australia. One hundred and five women with advanced breast cancer were recruited and randomised to receive the intervention or usual care, then asked to complete the European Organisation of Research and Treatment of Quality of life Q-C30 version (2.0) (EORTC Q-C30) (version 2) and Supportive Care Needs Survey (SCNS) at 1 month and 3 months postrecruitment. No significant differences were detected between intervention and usual care groups in the SCNS or the EORTC Q-C30 subscale scores. However, when the groups were divided into high needs (score of above 50) and low baseline needs (score of 50 or below) for each SCNS subscale, a significant difference between intervention and usual care groups was found in the psychological/emotional subscale among women with high baseline needs. In conclusions, this study demonstrated that a face-to-face session and follow-up phone call with a breast care nurse significantly reduced the psychological and emotional needs of those with high initial needs. There was no evidence of the intervention influencing the quality of life; or perceived needs of women with low initial psychological/emotional needs or perceived needs in other domains. Possibly, the intervention was not sufficiently intense to achieve an effect.     

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.     

Quality of life in metastatic breast cancer patients under chemotherapy or supportive care: a single-institution comparative study

The aim of the present study was to evaluate quality of life (QoL) parameters in patients with metastatic breast cancer (MBC) and assess the potential differences between patients receiving chemotherapy and those undergoing supportive care interventions. In total, 210 women with MBC were enrolled in this prospective, randomized, single-institution study. The primary outcome of the trial was QoL assessment, using the self-administered European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30, version 3) and Quality of Life Questionnaire Breast 23 (QLQ-BR23) questionnaires. Quality of life was found to be statistically better (P = 0.008) in MBC patients receiving chemotherapy than those under only supportive care. Statistically significant differences in favour of chemotherapy were also found in functioning subscales, symptom single-item questions and sexual functioning. Our findings suggest that chemotherapy in MBC patients with good performance status is the more rational therapeutic approach in terms of QoL improvement.     

Predictors of change in unmet supportive care needs in cancer

Objective: Patient Reported Outcome (PRO) assessments can assist health professionals to tailor their health practices to the individual needs of patients and improve patient care over time. The present study assessed prospective predictors of unmet supportive care needs in cancer patients over a six‐month period. Methods: Participants were recruited from a regional cancer treatment centre in Australia and completed the Supportive Care Needs Survey (SCNS) at recruitment (n=439; 61.4% response rate) and six months follow‐up (n=396). Hierarchical logistic regression was used to identify predictors of change in unmet needs across each supportive care domain. Predictor variables were socio‐demographic, treatment and psychosocial factors including depression, anxiety, social support, and patient satisfaction. Results: Unmet needs were reported by approximately two‐thirds of patients at baseline and half of patients at six months follow‐up. Having unmet needs at baseline was the strongest predictor of unmet needs at six months. Longer time since diagnosis was a consistent predictor of greater unmet needs, associated with change in physical/daily living, psychological and health system and information unmet needs over time. By contrast, a complex relationship was found in that patient satisfaction, psychosocial and treatment characteristics predicted higher needs in some domains and lower needs in others. Conclusions: Unmet supportive care needs persist over time and psychological needs may emerge later in the illness continuum. Interventions to meet the needs of longer term cancer survivors are needed and should closely articulate with reported supportive care needs. Copyright © 2009 John Wiley & Sons, Ltd.     

Open access follow‐up care for early breast cancer: a randomised controlled quality of life analysis

This study evaluated the acceptability of a supportive model of follow‐up. One hundred and twelve women recovering from breast cancer were randomised to receive standard breast clinic aftercare (Control n = 56) or on demand by open access aftercare by breast care nurses (Intervention n = 56). Participants attended a support‐based psycho‐educational programme delivered in four half‐day group sessions. Three quality of life questionnaires (EORTC QLQ‐C30, QLQ‐BR23, HADS) were administered at baseline and 6‐monthly intervals for 2 years. Multilevel linear regression modelling methods were used for evaluation. Age was found to be a statistically significant predictor of quality of life in several sub‐scales. Increasing age was negatively associated with sexual functioning, systematic therapy side effects and physical functioning, and positively associated with future perspective. Aftercare assignment was not found to be a statistically significant predictor. Women treated for early breast cancer were not disadvantaged by allocation to the open access supportive care model in terms of quality of life experienced. The model for follow‐up was demonstrated to be a feasible alternative to routinised hospital‐based follow‐up and adds to the evidence for stratified follow‐up for low‐risk cancer patients, incorporating self‐management education. Stratified follow‐up pathways are viewed as a preferable approach.     

Unmet needs of gynaecological cancer survivors: implications for developing community support services

After treatment completion, gynaecological cancer survivors may face long-term challenges and late effects, specific to this disease. Available research on supportive care needs of women with gynaecological cancer is limited. This study aimed to determine the prevalence and correlates of unmet needs within a population of gynaecological cancer survivors. Eight hundred and two women participated in a population-based mail survey in 2004 (56% response rate). The questionnaire included a validated instrument to assess 45 need items across multiple supportive care domains, and a range of measures to evaluate related correlates consistent with a social-ecological perspective. Forty-three per cent of respondents reported having at least one moderate- or high-level unmet need. The five highest included needing help with fear about the cancer spreading (17%), concerns about the worries of those close to them (15%), uncertainty about the future (14%), lack of energy/tiredness (14%), and not being able to do things they used to do (14%). Subgroups of women with higher odds of reporting 'some' unmet needs across multiple supportive care domains include those who, are not in remission, live with lymphoedema or are unable to work due to illness. Odds were also higher for women who had undergone more recent treatment, and who lived in rural or remote locations. Further assistance with the top specific concerns of gynaecological cancer survivors is recommended. Identified subgroups with higher needs are important targets for support.     

The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure)

BACKGROUND: Many cancer survivors experience ongoing morbidity over the survivorship continuum and their supportive care needs have yet to be comprehensively assessed. METHODS: This study aimed to develop and empirically evaluate a self-report measure of cancer survivors' supportive care needs. In Phase I, questionnaire items were generated based upon previous qualitative research that identified both unique and shared needs in survivors and their partners; items were constructed into the Cancer Survivors' Unmet Needs measure (CaSUN). In Phase 2, the CaSUN was completed by 353 cancer survivors who had been diagnosed with cancer between 1 and 15 years earlier and were currently disease-free. RESULTS: After modification, the CaSUN included 35 unmet need items, 6 positive change items and an open-ended question. Good acceptability, internal consistency and validity were demonstrated, although test-retest reliability was low. Maximum likelihood factor analysis identified five discrete factors: Existential Survivorship, Comprehensive Care, Information, Quality of Life and Relationships. CONCLUSIONS: Preliminary data indicates that the CaSUN meets the majority of psychometric criteria for assessment measures, although its low test-retest reliability awaits further investigation. The CaSUN will facilitate the evaluation of supportive care services and generation of service delivery recommendations for cancer survivors.     

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。     

Quality of life in the first year after breast cancer surgery: rehabilitation needs and patterns of recovery

Background. Although mortality rates from breast cancer are declining, many breast cancer survivors will experience physical and psychological sequelae that affect their everyday lives. Few prospective studies have examined the rehabilitation needs of newly diagnosed breast cancer patients, and little is known about the predictors of healthrelated quality of life (QOL) in this population.Methods. Between 1987 and 1990, 227 women with early stage breast cancer participated in a prospective longitudinal study in which detailed information was collected through interviews, standardized measures of QOL and psychological distress, and clinical evaluation. Comparisons of physical and treatmentrelated problems were made according to type of surgical treatment. Multivariate regression analysis was performed to examine the predictors of QOL at one year after surgery.Results. Physical and treatmentrelated problems were reported frequently one month after breast cancer surgery, and occurred with equal frequency in women receiving modified radical mastectomy or breast conservation treatment. There were no significant differences in problems reported at one year by type of surgery; however, frequently reported problems include numbness in the chest wall or axilla, tightness, pulling or stretching in the arm or axilla, less energy or fatigue, difficulty in sleeping, and hot flashes. There was no relationship between the type of surgery and mood or QOL. Poorer QOL one year after surgery was significantly associated with greater mood disturbance and body image discomfort one month after surgery, as well as positive lymph node involvement. Although the majority of patients experienced substantial disruptions in the physical and psychosocial dimensions of QOL postoperatively, most women recovered during the year after surgery, with only a minority (<10%) significantly worsening during that time.Conclusions. At one year after surgery, most women report high levels of functioning and QOL, with no relationship between the type of surgery and QOL. Women who reported lower levels of QOL at one year after diagnosis had greater mood disturbance and poorer body image one month after surgery, as well as lower income and positive axillary nodes.     

Third line chemotherapy in patients with metastatic breast cancer: an evaluation of quality of life and cost

Many patients with metastatic breast cancer receive several types of chemotherapy, although it is recognized that there is a declining probability of response. A major problem confronts oncologists in deciding when to recommend to patients that no further chemotherapy should be given. To address this problem we have assessed prospectively, healthrelated quality of life (HRQL) and costs of health care for 35 patients with metastatic breast cancer receiving third line chemotherapy in a representative clinical situation. HRQL and utilities were measured longitudinally using the EORTC QLQC30 questionnaire and the time tradeoff method. Patients received a median of 2 cycles of chemotherapy and lived a median of 4.3 months. Twelve patients (34%) had substantial (> 10 points) improvement in the Global QL subscale and more than 30% of patients had similar changes in emotional and social function. The median baseline utility score was 0.9 and utilities correlated poorly with HRQL subscale. Eighteen patients had measurable disease and one patients experienced a partial response. Grade 3/4 toxicity occurred in 30% of patients. The average cost of management from study entry to death was CDN$ 17,260 (~US$ 12,000). Sixteen percent of this cost was associated directly with chemotherapy while hospital admissions and outpatient visits accounted for 50% and 14% of the total cost respectively. We conclude that: (a) many patients receiving third line chemotherapy maintain or improve indices of HRQL despite short survival and a low response rate: this might be due to chemotherapy, paclebo effect, or a shift in frame of reference for HRQl; (b) patients were unwilling to trade quantity for quality of life; and (c) response rates and survival may be overestimated in patients selected for clinical trials.     

Quality of life in women with recurrent breast cancer

Although the psychosocial concomitants of early-stage breast cancer have been well-documented, the relationship between cancer recurrence and quality of life remains less clear. We conducted a prospective, longitudinal study in order to clarify the relationship between recurrent cancer and quality of life, and to determine predictors of quality of life following recurrence. Sixty-nine women with recurrent breast cancer completed questionnaires assessing multiple components of quality of life at three time points: prior to recurrence, immediately after the diagnosis of recurrence, and at follow-up 6 months later. Perceptions of overall quality of life, general health status, emotional, social, and physical functioning were poorer immediately following the diagnosis of recurrence than they had been prior to recurrence. These women also evidenced significant improvement in several domains of quality of life between initial recurrence and follow-up; nonetheless, most areas of quality of life were impaired compared to pre-recurrence. Self-reported physical symptoms were a strong predictor of post-recurrence ratings of overall quality of life. These data suggest that the recurrence of breast cancer is associated with significant changes in quality of life. Quality of life did not progressively deteriorate, however, attesting to the resilience of women coping with this major stressor. These data shed light on issues of potential importance to patients managing this serious illness and may have implications for health-care professionals working with this population.