How do radiation oncology health professionals inform breast cancer patients about the medical and technical aspects of their treatment?

Background and Purpose: Radiation therapy patients need information to make treatment decisions, understand treatment and manage side effects. The purpose of this study was to: (1) Identify information about radiation therapy routinely provided to breast cancer patients; (2) Determine which health professionals provide information; (3) Examine whether information is routinely provided at the same time points and (4) Determine whether health professionals and patients place similar importance on specific information.Materials and Methods: Health professionals in radiation therapy departments in Australia and New Zealand completed self-administered questionnaires. Results were analysed and compared to patient responses from a previous study. Results: Forty-one of 52 departments participated in this survey. Information provision was inconsistent between departments in terms of how and when information was given. Although the types of information provided to patients appeared to align with patients' needs, health professionals and patients placed different levels of importance on specific information. Conclusions: A wide range of information is provided to patients. However, the priority given to different information needs and the focus of information provision may not be optimal from the perspectives of patients. Further research needs to be conducted to determine patients information needs and develop specific information resources tailored to meet these needs

Paediatric palliative and supportive care: caring for life: the needs of children and families in Western Australia

Palliative care is the relief of symptoms, regardless of their impact on the underlying disease process. The philosophical underpinning of current international paediatric palliative and supportive care models is that palliative and supportive care should be offered to all children with life threatening or chronic illnesses/disabilities with complex care needs. This approach allows the integration of cure-directed treatment and palliative care. allowing children to benefit from both philosophies of care. In Australia, there is increasing recognition of the need for the development of appropriate paediatric palliative care services, especially in Western Australia where supportive care services for children with life-limiting conditions are significantly underdeveloped. The needs of children with life threatening conditions and their families are unique and require special consideration to enable the appropriate delivery of multidisciplinary care that aims to relieve suffering and improve quality of life. Although traditionally skills and knowledge base were developed for end-of-life care for adults, palliative care for children with life-threatening illnesses may be combined with curative or disease-modifying therapy. In addition, a child\u27s progressive, life-threatening illness has a profound effect on all dimensions of family life. Families are affected emotionally, psychologically, and financially as family structure and organisation become permanently altered. Only recently have the specific palliative care needs of children and their families been recognised..

Systematic review of the efficacy of antiemetics in the treatment of nausea in patients with far advanced cancer

Objectives: To systematically review studies of antiemetics used in the treatment of nausea in patients with far-advanced cancer. Data sources: Randomized controlled trials (RCT) and uncontrolled studies identified by electronic and hand searching. Review methods: Identified studies were appraised for quality and effect size. Results: Of 21 studies included, 2 were systematic reviews, 7 were RCT and 12 were uncontrolled studies or case series. Differences in interventions and outcomes amongst the RCT precluded any quantitative data synthesis and all seven studies were prone to bias. Whereas uncontrolled studies indicated a high response rate to standard regimens (75-93% for both nausea and vomiting), RCT showed much lower response rates to these agents (23-36% for nausea, 18-52% for vomiting). The two methods of antiemetic choice (choice based either on the inferred mechanism or empirical) were equally effective. There is reasonably strong evidence for the use of metoclopramide in cancer-associated dyspepsia and steroids in malignant bowel obstruction. There was conflicting evidence about the efficacy of serotonin antagonists compared with standard treatments (e.g. metoclopramide, dopamine antagonists and dexamethasone). There was little or no evidence of the efficacy of some commonly used and seemingly effective drugs such as haloperidol, cyclizine, and methotrimeprazine. Conclusion: Evidence supporting the existing consensus-based guidelines for management of nausea and vomiting in advanced cancer is sparse. Current approaches to treatment based on the neuropharmacology of the emetic pathway may be inappropriate in this setting. Well-designed studies of the impact of "standard" management and novel agents on nausea and vomiting in palliative populations are needed

The landscape of distress in the terminally ill

Understanding the complexities of distress and knowing who is most vulnerable isfoundational to the provision of quality, palliative end-of-life care. Although prior studieshave examined the prevalence of symptom distress among patients nearing death, thesestudies have tended to largely focus on physical and to a lesser extent, psychologicalchallenges. The aim of this study was to use the Patient Dignity Inventory (PDI), a novel,reliable, and validated measure of end-of-life distress, to describe a broad landscape of distressin patients who are terminally ill. The PDI, a 25-item self-report, was administered to 253patients receiving palliative care. Each PDI item is rated by patients to indicate the degree towhich they experience various kinds of end-of-life distress. Palliative care patients reported anaverage of 5.74 problems (standard deviation, 5.49; range, 0e24), including physical,psychological, existential, and spiritual challenges. Being an inpatient, being educated, andhaving a partner were associated with certain kinds of end-of-life problems, particularlyexistential distress. Spirituality, especially its existential or ??sense of meaning and purpose??dimension was associated with less distress for terminally ill patients. A better appreciationfor the nature of distress is a critical step toward a fuller understanding of the challengesfacing the terminally ill. A clear articulation of the landscape of distress, including insightregarding those who are most at risk, should pave the way toward more effective, dignityconservingend-of-life care

Staying just one step ahead: providing care for patients with motor neurone disease

Introduction: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease(MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. Methods: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. Results: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual’s version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members).Conclusions: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs

Effective communication and information provision in radiotherapy - the role of radiation therapists

Introduction: Health professionals have a duty of care to radiotherapy patients in providing them with adequate information before treatment. There is a lack of research that describes the roles of radiation therapists and radiation oncology nurses in providing information to patients. This study aimed to: (1) explore how radiation therapists communicate with breast cancer patients during a radiotherapy planning appointment; (2) determine what information is provided during this appointment and (3) explore radiation therapists perspectives on their role in providing patient information and support. Methods: The following methodologies were used: self-report questionnaires; simulated radiotherapy planning sessions and joint interpretive forums. Statistical analysis was used to analyse the questionnaires and the simulated planning sessions and forums were analysed qualitatively. Results: A total of 110 radiation therapists participated in the survey. We simulated two radiotherapy planning appointments and held two forums. Four themes emerged: role definitions, reducing patient anxiety and distress, barriers and strategies for effective communication and confidence in patient communication. Conclusion: Radiation therapists play an important role in communicating with patients and providing information, particularly if patients exhibit anxiety and distress. Further research is required to determine whether patients information needs can be met with additional information provided by radiation therapists

Testing the feasibility of the Dignity Therapy interview: adaptation for the Danish culture

<p>Abstract</p> <p>Background</p> <p><b>'</b>Dignity Therapy' (DT) is a brief, flexible intervention, which allows patients to complete an interview and create a document regarding their life, identity and what they want to leave in writing for their loved ones. DT is based on the DT Question Protocol. Developed and tested in English speaking settings, DT has proven to be a feasible and effective way to enhance patient dignity, while diminishing suffering and depression. The aim of this study was to test the acceptability and feasibility of the DT Question Protocol among Danish health professionals and cancer patients, and to obtain preliminary estimates of patient uptake for DT. These results will be used to inform a larger evaluation study.</p> <p>Method</p> <p>Ten professionals were interviewed about their perception of DT and the Question Protocol. It was then tested with 20 patients at two palliative care sites and one gynecologic oncology department. Data was analyzed using content analysis techniques to evaluate the protocol for relevance, acceptability and comprehension. The interest and relevance of the intervention was also determined by examining the preliminary participation rate.</p> <p>Results</p> <p>Overall, DT was perceived to be comprehensible and relevant. Professionals highlighted six concerns that might warrant modification. These issues were examined using patient data. Some of their concerns overlapped with those raised by the professionals (e.g. <it>'unacceptable self-praise' </it>and '<it>interference with the lives of others'</it>). Tailoring DT to Danish culture required easily accommodated adjustments to the procedures and the DT Question Protocol. Some concerns expressed by health professionals may have reflected protectiveness toward the patients. While the intervention was relevant and manageable for patients admitted to palliative care, DT was less easily implemented at the gynecologic oncology department.</p> <p>Conclusion</p> <p>Based on patients' and professionals' reaction to the DT Question Protocol, and based on the preliminary proportion of participants accepting DT, the DT question protocol - with minor adaptations - appears to be a manageable, acceptable and relevant intervention for Danish patients admitted to palliative care.</p

Family satisfaction with palliative care: A test of four alternative theories.

The experience of dealing with end-stage cancer in a family member has been reported to be stressful. One source of stress experienced by family members may be dissatisfaction with care received by the patient and themselves. For health professionals to provide care that promotes family satisfaction, it is essential to measure this phenomenon and understand the elements that contribute to satisfaction. An examination of the literature revealed four competing explanatory theories of satisfaction, none of which has solid empirical support. Moreover, these theories had not been tested with families or those experiencing cancer care in particular. Therefore, the aim of this research was to test these alternative theories using theoretical and empirical modeling with the expectation that a useful model would be identified to guide clinical practice of families in terminal care situations. The theories tested were: (1) Vroom's Fulfillment Theory, (2) Porter's Discrepancy Theory, (3) Thibaut and Kelley's Social Comparison Theory, and (4) Ajzen and Fishbein's Expectancy Value Theory. A correlational design with a causal modeling methodology was used. One hundred and nine family members of patients with advanced cancer were obtained from three different palliative care services. Five instruments were used to collect data: (1) FAMCARE Scale, (2) F-Care Needs Scale, (3) F-Care Expectations Scale, (4) F-Care Perceptions Scale, and (5) a short demographic questionnaire. Data analysis included use of descriptive statistics to summarize the sample in terms of demographic variables, reliability and validity testing of the instruments, and theoretical and empirical model testing using multiple regression techniques and residual analysis. Of the four theories tested, Discrepancy theory was the most credible, accounting for 68 percent of explained variance in family care satisfaction. Empirical modeling resulted in identification of the Family Care Satisfaction Model, which explained 78 percent of the variance in care satisfaction. Implications for theory construction and clinical practice are presented and recommendations for further research offered. The family constitutes perhaps the most important social context within which health and illness occur. As more families are required to care for dependent or ill members at home, understanding the needs, expectations, and satisfactions with care experienced by families will become increasingly important