Making the unbearable, bearable: Qualitative examination of patient, family and nurses' perspectives on the role and value of specialist metastatic breast care nurses.

PURPOSE: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet. METHOD: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically. RESULTS: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition. CONCLUSIONS: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC.

Associations between sex, age and spiritual well-being scores on the EORTC QLQ-SWB32 for patients receiving palliative care for cancer: A further analysis of data from an international validation study.

OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores. METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied. RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self. CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.

Barriers and enablers to implementing scalp cooling in Australia: a qualitative study of health professionals' attitudes to and experience with scalp cooling.

BACKGROUND: Chemotherapy-induced alopecia is a common and distressing adverse event for patients. Scalp cooling to reduce this alopecia has been available in Europe for more than a decade, but only recently introduced in Australia. The aim of this study was to qualitatively explore health professionals' perceptions of the barriers and enablers to the implementation of scalp cooling in Australian cancer centres. METHODS: Using a qualitative methodology, telephone interviews were conducted with 21 health professionals working in a tumour stream where chemotherapy-induced alopecia is an adverse event of treatment. Participants were recruited from five centres in Australia where scalp cooling is currently available and one centre without access to the technology. RESULTS: Four interrelated themes were identified: (1) health professional attitudes, (2) concerns for patient equity, (3) logistical considerations and (4) organisational support. CONCLUSIONS: This qualitative study provides the first methodological exploration of Australian health professionals' perceptions of barriers and enablers to scalp cooling uptake. The results highlighted health professional support drives the introduction of scalp cooling. Integration of the technology requires adjustments to nursing practice to manage the increased time, workload and change in patient flow. Strategies to manage the change in practice and organisational support for change in work flow are essential for successful implementation into routine care.

Randomized controlled trial of a structured intervention to facilitate end-of-life decision making in patients with advanced cancer.

PURPOSE: This study tested the efficacy of an intervention on end-of-life decision making for patients with advanced cancer. PATIENTS AND METHODS: One hundred twenty patients with metastatic cancer who were no longer being treated with curative intent (and 87 caregivers) were randomly assigned to the intervention (n = 55) or treatment as usual (n = 65). Primary outcome measures were the proportion of patients with do-not-resuscitate (DNR) orders, timing of DNR orders, and place of death. Secondary outcome measures were completed at study enrollment, 3 weeks later, and 3 months later, including patients' knowledge, mood, and caregiver burden. RESULTS: High, but equivalent, rates of DNR orders were observed in both groups. In per-protocol analyses, DNR orders were placed earlier for patients who received the intervention (median, 27 v 12.5 days; 95% CI, 1.1 to 5.9; P = .03) and they were more likely to avoid a hospital death (19% v 50% (95% CI, 11% to 50%; P = .004). Differences between the groups over time were evident for estimates of cardiopulmonary rehabilitation (CPR) success rates (P = .01) but not knowledge of CPR (P = .2). There was no evidence that the intervention resulted in more anxious or depressive symptoms. Caregivers experienced less burden in terms of disruption to schedule if the patient received the intervention (P = .05). CONCLUSION: An intervention, consisting of an informational pamphlet and discussion, was associated with earlier placement of DNR orders relative to death and less likelihood of death in hospital. There was no negative impact of the intervention on secondary outcomes, although the sample may have been too small to detect differences.

Cancer-related fatigue in women with breast cancer: outcomes of a 5-year prospective cohort study.

PURPOSE: Prolonged and disabling fatigue is prevalent after cancer treatment, but the early natural history of cancer-related fatigue (CRF) has not been systematically examined to document consistent presence of symptoms. Hence, relationships to cancer, surgery, and adjuvant therapy are unclear. PATIENTS AND METHODS: A prospective cohort study of women receiving adjuvant treatment for early-stage breast cancer was conducted. Women (n = 218) were enrolled after surgery and observed at end treatment and at 1, 3, 6, 9, and 12 months as well as 5 years. Structured interviews and self-report questionnaires were used to record physical and psychologic health as well as disability and health care utilization. Patients with CRF persisting for 6 months were assessed to exclude alternative medical and psychiatric causes of fatigue. Predictors of persistent fatigue, mood disturbance, and health care utilization were sought by logistic regression. RESULTS: The case rate for CRF was 24% (n = 51) postsurgery and 31% (n = 69) at end of treatment; it became persistent in 11% (n = 24) at 6 months and 6% (n = 12) at 12 months. At each time point, approximately one third of the patients had comorbid mood disturbance. Persistent CRF was predicted by tumor size but not demographic, psychologic, surgical, or hematologic parameters. CRF was associated with significant disability and health care utilization. CONCLUSION: CRF is common but generally runs a self-limiting course. Much of the previously reported high rates of persistent CRF may be attributable to factors unrelated to the cancer or its treatment.

Follow up after breast cancer -- views of Australian women.

BACKGROUND: Survivorship care after breast cancer treatment is increasingly complex as it aims to manage the long term effects of cancer and its treatment, including psychosocial needs. While survivorship care is traditionally delivered by surgeons and specialist oncologists in Australia, general practitioners are ideally placed to manage these issues. METHODS: This study explored the attitudes of 20 breast cancer survivors to GP involvement in follow up care through semi-structured telephone interviews, which were analysed using qualitative methods. RESULTS: Women were reluctant to change from specialist based care but identified many potential benefits of GP involvement in long term cancer care. They expressed an interest in shared care programs between specialists and GPs. Some participants thought that additional training may be required if GPs were to deliver this care. CONCLUSION: This study shows cautious interest from breast cancer survivors for increasing GP involvement in follow up care. These views should be considered as alternative models of care are developed.

Pooled analysis of diarrhea events in patients with cancer treated with lapatinib.

PURPOSE: To characterize diarrhea events in patients with cancer treated with lapatinib as monotherapy or in combination with capecitabine or taxanes. PATIENTS AND METHODS: Eleven clinical trials (phase I, II, or III) in patients with metastatic cancer were analyzed. Lapatinib was administered at doses ranging from 1,000 to 1,500 mg/day as monotherapy (n = 926) or in combination with capecitabine (n = 198) or taxanes (n = 687). Diarrhea events were characterized based on severity, time to onset, duration, required interventions, and clinical outcomes. RESULTS: In the pooled analysis of nine studies, diarrhea occurred in 55% of lapatinib-treated patients and 24% of patients not receiving lapatinib. All grade diarrhea occurred in 51% of patients treated with lapatinib monotherapy and 65% treated with lapatinib plus capecitabine. In a separate analysis, 48% of patients treated with lapatinib plus a taxane experienced diarrhea. Overall, most diarrhea events were grade 1/2. Grade 3 events occurred in <10% of patients and grade 4 events were rare (

An educational workshop program for rural practitioners to encourage best practice for delivery of systemic adjuvant therapy.

BACKGROUND: The Rural Systemic Adjuvant Therapy Project was initiated to encourage best practice in the treatment of women from rural areas who have breast cancer. METHOD: We developed an educational program, piloted it and conducted it in 5 regions. In a pre-evaluation/post-evaluation, we assessed participants' perceived knowledge about systemic adjuvant therapy. RESULTS: A statistically significant increase occurred in participants' reported knowledge about all program topics. Improved communication links with the local or visiting medical oncologist were planned. CONCLUSION: The workshop program was found to be a successful tool for delivering evidence-based information about the use of systemic adjuvant therapy.

Education and role modelling for clinical decisions with female cancer patients.

BACKGROUND: Patients vary widely in their preferences and capacity for participating in treatment decision-making. There are few interventions targeting patient understanding of how doctors make decisions and shared decision-making. This randomized trial investigates the effects of providing cancer patients with a package designed to facilitate shared decision-making prior to seeing their oncologist. PATIENTS AND METHODS: Sixty-five female cancer patients were randomized to receive either the package (booklet and 15-min video) or a booklet on living with cancer, before their initial consultation. Participants completed questionnaires prior to the intervention, immediately after the oncology consultation, and 2 weeks and 6 months later. The first consultation with the oncologist was audio-taped and transcribed. RESULTS: Patients receiving the package were more likely than controls to declare their information and treatment preferences in the consultation, and their perspectives on the costs, side-effects and benefits of treatment. Doctors introduced considerably more new themes in the consultations with intervention subjects than they did with controls; no other differences in doctor behaviour were noted. CONCLUSIONS: This short intervention successfully shifted patient and doctor behaviour closer to the shared decision-making model, although it did not alter patients' preferences for information or involvement.