Do carer's levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?

PURPOSE: The aim of the current study was to determine how carer needs changed longitudinally and understand associations between unmet needs and distress. METHODS: Family carers of patients with high-grade glioma (HGG) were recruited. Carers completed questionnaires during patients' chemoradiotherapy (T1), 3 months (T2) and 6 months (T3) including the following: the Distress Thermometer, the General Health Questionnaire-12, the Partner and Carer Supportive Care (PCS) Needs Scale and its supplement the Access to Services Needs Scale and the Brain Tumour Specific Supportive Care Needs Scale. Linear latent growth models were applied. RESULTS: The time 1 questionnaire was completed by 118 carers; 70 carers provided responses at time 3. While the mean numbers of elevated (moderate to high) needs remained stable over time, the specific needs changed. The most frequently reported PCS needs included the impact of caring on the carer's working life or usual activities, finding more accessible parking, making life decisions in the context of uncertainty, reducing stress in the patient's life and understanding the patient's experience. The most frequently reported need unique to carers of a brain tumour patient was for information on adjusting to cognitive changes in the patient. Other prominent needs included managing difficult aspects of the patient's behaviour and adjusting to changes in the patient's personality, both of which increased over time. Higher numbers of unmet needs were associated cross-sectionally with higher distress levels. CONCLUSION: Carers of people with HGG remain highly distressed and their needs evolve over time, indicating a requirement for ongoing evaluation of unmet needs and interventions to address carer psychological morbidities.

Time, space and technology in radiotherapy departments: how do these factors impact on patients' experiences of radiotherapy?

Radiation therapists (RTs) plan and deliver radiotherapy treatment for patients diagnosed with cancer. They need to communicate regularly with their patients and may have a role to play in reducing patient anxiety and distress. The objectives were to explore how the environment of radiotherapy departments supports or inhibits communication generally and information giving and supportive care provision in particular. An ethnographic approach was used to gather rich descriptive data through observations and interviews conducted in two Australian radiotherapy centres. Time, space and a technology driven culture was found to negatively affect the quality of interaction that occurred between RTs and their patients. This research has shown design/modification of spaces is needed in the radiotherapy environment to reflect a patient care centred culture and to enhance opportunities for RTs to provide supportive care for their patients.

Radiation therapists' and radiation oncology medical physicists' perceptions of work and the working environment in Australia: a qualitative study.

Workforce recruitment and retention are issues in radiation oncology. The working environment is likely to have an impact on retention; however, there is a lack of research in this area. The objectives of this study were to: investigate radiation therapists' (RTs) and radiation oncology medical physicists' (ROMPs) perceptions of work and the working environment; and determine the factors that influence the ability of RTs and ROMPs to undertake their work and how these factors affect recruitment and retention. Semi-structured interviews were conducted and thematic analysis was used. Twenty-eight RTs and 21 ROMPs participated. The overarching themes were delivering care, support in work, working conditions and lifestyle. The overarching themes were mostly consistent across both groups; however, the exemplars reflected the different roles and perspectives of RTs and ROMPs. Participants described the importance they placed on treating patients and improving their lives. Working conditions were sometimes difficult with participants reporting pressure at work, large workloads and longer hours and overtime. Insufficient staff numbers impacted on the effectiveness of staff, the working environment and intentions to stay. Staff satisfaction is likely to be improved if changes are made to the working environment. We make recommendations that may assist departments to support RTs and ROMPs.

Patients' perspectives on the role of their general practitioner after receiving an advanced cancer diagnosis.

The aim of this study was to explore patients' perspectives on the role of their general practitioner (GP) after an advanced cancer diagnosis. A qualitative research approach was used. Semi-structured interviews were conducted and data were analysed using a constant comparative methodology. Participants were eligible if they were diagnosed with advanced cancer and referred for palliative radiotherapy. Data saturation was achieved after 21 interviews. Key themes included (1) obtaining diagnosis and referral for advanced cancer treatment; (2) preference for specialist oncology care; (3) a preference for GP to act as an advocate; and (4) obtaining ongoing routine care from their GP. GP involvement in the patients' management was dependent on: time since diagnosis, GP's involvement in diagnosis and referral, doctor/patient relationship, additional chronic conditions requiring management, frequency of seeing oncologist and specialist recommendation to involve GP. Patients want GPs to have varying levels of involvement following an advanced cancer diagnosis. Not all communication between GPs and patients was positive suggesting communication skills training may be a priority. Patients wished to maintain continunity of care for their non-cancer related issues and healthcare of their family members. Future research needs to focus on working with GPs to increase their role in the management of advanced cancer.

Pilot randomised controlled trial of a radiation therapist-led educational intervention for breast cancer patients prior to commencing radiotherapy.

PURPOSE: Although patients receive information prior to commencing radiotherapy, they often experience anxiety and distress. We conducted a pilot randomised controlled trial to determine whether a radiation therapist led psycho-educational intervention for breast cancer patients prior to radiotherapy is likely to be effective in reducing radiotherapy-related concerns, patient anxiety and depression. METHODS: The intervention comprised two face-to-face consultations with a radiation therapist (one prior to radiation planning and the other prior to treatment). Patients completed surveys at baseline, prior to treatment planning and on the first day of treatment. Outcome measures included the Hospital Anxiety and Depression Scale, Radiation Therapy Related Patient Concerns and Radiation Therapy Knowledge Scales. RESULTS: One hundred and twenty two patients completed baseline measures. Fifty-eight patients received usual care, and 64 received the intervention. After the first consultation, patient anxiety was significantly lower in the intervention group (p = 0.048), as were concerns about radiotherapy (p = 0.001). There were no differences between groups for depression. Patient knowledge for the intervention group was higher after the first consultation (p < 0.001). CONCLUSION: This intervention is likely to be effective in reducing patient anxiety and concerns and increasing knowledge. Future research is required to test this intervention with a larger population.

An investigation of factors that influence general practitioners' referral of computed tomography scans in patients with headache.

AIM: In assessing patients with headaches, general practitioners (GPs) play an important role in determining which patients require computed tomography (CT) scans. The purpose of this study was to identify factors that influence GPs' decisions to refer CT scans for patients with headaches. MATERIALS AND METHODS: A self-administered survey was presented to GPs in Western Australia. One hundred and twenty-eight vignettes describing patients who may have required CT referral for headache were constructed encompassing six clinical variables. Nine vignettes, selected at random, were presented to each respondent. Respondents were asked if they would refer the patient for diagnostic imaging tests, if so, which imaging modalities would they request, how urgently and the perceived benefits of the requested imaging modality. Multinomial logistic regression was used for the multivariate analysis. RESULTS: We received 105 completed questionnaires (21%). GPs were more likely to refer patients with headaches for diagnostic imaging and CT scans in the following clinical scenarios: patients with a history of colorectal cancer and epilepsy; and patients feeling unwell for the past 6 weeks and headache being exacerbated with valsalva manoeuvrers. Private health insurance and other respondent demographics such as GPs experience and site of care increased imaging referral. CONCLUSION: GP's referral decisions of diagnostic imaging and CT examinations for patients with headaches are dependent on clinical scenarios and the likelihood of a significant pathology. Further research is required to identify the significant clinical findings with regard to the CT referrals and ensure that CT scans are not requested in patients who are unlikely to benefit.

Establishing research priorities for Australian radiation therapists: what patient care priorities need to be addressed?

Much of the research conducted in radiotherapy focuses on technology advances; however, research may also be warranted in the area of patient care. The aims of this paper are to (1) identify patient care-related research priorities in radiation therapy and (2) describe similarities and differences in radiation therapists' responses to research priorities related to patient care by subgroups revealed through cluster analysis. A Delphi process was used, examining problems in research that radiation therapists face. Three hundred and seventy-four problems were identified. These were translated into 53 research areas which were then prioritised. Participant subgroups were identified using a hierarchical cluster procedure. Agreement and disagreement between subgroups for the subscale of 'Patient Care' were analysed with ANOVA and post hoc Scheffe multiple comparisons. The three subgroups had varying degrees of research interest in patient care. The groups agreed on the importance of research in relation to patient care in reducing and managing side effects, patient education and support, and treatment techniques. However, there was disagreement about the importance of conducting research into the role of radiation therapists, radiation therapists communicating and educating patients, and psychosocial support. Further research is warranted to determine radiotherapy patients' priorities and improve evidence-based practice.

Management of cases that might benefit from radiotherapy: a standardised patient study in primary care.

The aim of this study was to assess general practitioner (GP) consultations with standardised patients presenting with cancer-related problems that might benefit from radiotherapy. Standardised patient scenarios were constructed with indications for radiotherapy or with side effects of radiotherapy. Six GPs consulted six standardised patients. All consultations were video recorded. Two GPs independently rated the consultation performance using the Leicester Assessment Package (LAP). Each consultation was also assessed by two radiation oncologists to assess specific decisions taken or advice offered to 'patients' in each case. The mean duration of consultations was 13 min and 55 s. Three GPs differed significantly (P < 0.025) in competencies measured by the LAP, but not as assessed by radiation oncologists. There was no significant difference in LAP scores when reviewed by scenario. However, there was significant differences in the management of the case with prostate cancer (P= 0.005) and data suggest that GPs management of different problems presented varied widely. These data are consistent with the published literature which suggests that in practice not all patients are appropriately advised or referred. There is a need for innovations to support GPs to manage patients who would benefit from radiotherapy.

Patient and caregiver perceptions of communication of prognosis in high grade glioma.

This study sought the views of patients and their caregivers on their experience of being diagnosed with high grade glioma. Purposive sampling was used to recruit 19 patients and 21 caregivers from the medical oncology unit of a tertiary hospital. A semi-structured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data was analysed based on Grounded Theory and using the constant comparison method. This paper focuses on patient and carer perceptions of the initial communication about the diagnosis of high grade glioma and its prognosis. Themes identified included: (a) shock at hearing the diagnosis; (b) trying to understand and process prognostic information when still in shock; (c) the perception of hope being taken away; (d) individualizing prognostic information; and (e) clinicians' lack of communication skills. This study shows that the first communication of prognosis to patients with high grade glioma and their caregivers requires careful negotiation. It illustrates the inability of individuals to process detailed prognostic information when in a state of initial shock and distress. The importance of balancing honesty with hope in the communication of a poor prognosis is highlighted. We recommend that clinicians seek patient preferences for the amount and type of information they require and that prognostic information be individualized. Detailed discussions of prognosis should only take place with senior medical staff, or advanced trainees who have demonstrated acceptable communication skills.

Meeting breast cancer patients' information needs during radiotherapy: what can we do to improve the information and support that is currently provided?

Previous research has reported that patients require specific information relating to radiotherapy; however, these studies fail to describe patients' specific information needs over time. The aims of this study were to determine the specific information needs of breast cancer patients who are receiving radiotherapy and identify when patients prefer to receive specific information. Semi-structured interviews were conducted with 34 early breast cancer patients and 14 health professionals. Seventeen patients were interviewed after treatment completion, and 17 patients were interviewed on at least two occasions during their radiotherapy. Grounded theory and the constant comparative method were used to analyse the data. Three main categories emerged from the data: 'repertoire of information', 'amount of information relating specifically to radiotherapy' and'tailoring information to match patients' radiotherapy journeys'. Patients' information needs were identified, and key messages and strategies to inform patients were described. This paper identifies breast cancer patient's specific information needs during radiotherapy and shows that patients' information needs are highest during their first appointment with their radiation oncologist and at the time of their planning appointment. The findings presented will enable health professionals to develop and refine their approaches to patient education in radiotherapy.

Building a novel occupational rehabilitation program to support cancer survivors to return to health, wellness, and work in Australia.

PURPOSE: With a substantial increase in the population of cancer survivors of working age, issues concerning sustainable employment must be addressed. The health benefits of work are well established; however, the lack of support to transition back to work is a gap in survivorship care. Researchers, occupational rehabilitation and insurance sectors, cancer support services, and consumers have collaborated to develop a tailored, multimodal occupational rehabilitation program to support resumption of meaningful work for cancer survivors. This paper describes intervention development and refinement based on pilot results and expert- and consumer-recommendations. METHODS: The pilot was conducted within the life insurance sector, a collaboration fostered by global reinsurance company Swiss Re, with cancer survivors referred to an Australian provider of occupational rehabilitation services. RESULTS: Preliminary outcomes from 15 of 72 cancer survivors following adequate engagement (excluding those who withdrew or were still actively engaged) showed 10 (67%) with improved certified capacity to work, translating to 13 (87%) with improved work status. Consultant survey results indicated barriers to participation in and engagement with the program, including referral delays, health concerns, and cancer recurrence. Expert panel recommendations were used to refine the intervention and tailor to breast cancer survivors for the feasibility stage. CONCLUSIONS: Strengths include an innovative model of referral and funding, through a life insurance provider, the involvement of a multidisciplinary collaborative team to design, develop and implement the pilot, and considerable consumer involvement. IMPLICATIONS FOR CANCER SURVIVORS: The refined intervention will address a critical gap to improve reintegration into work and society, contributing to improved quality of life for cancer survivors in Australia. Models of referral through insurers to rehabilitation services could be adopted in other jurisdictions.

The phenomenon of making decisions during the experience of early breast cancer.

Breast cancer patients are faced with many decisions about their treatment, relationships and lives. The aims of this study were: to provide an understanding of the phenomenon of making decisions during the experience of early breast cancer, and to describe the types of decisions these patients are typically faced with. Previous research has focused largely on describing the different ways patients behave when making choices about treatment. However, few studies provide an understanding of the range of decisions women are likely to face, or describe what the experience of making these decisions is like. Hermeneutic phenomenology was used to inform the research. In-depth interviews were conducted with 18 breast cancer patients who had completed treatment. This study provides an understanding of the broad range of decisions with which women may be faced, and presents a new interpretation of what the experience of making decisions is like for women diagnosed with breast cancer. Five existential themes were found to be representative of the experience of making decisions: being challenged, getting ready, surviving, sharing the challenge and interrogating the future. Health professionals can use the understandings presented to improve their therapeutic relationships with patients and further assist women as they work through their experience of breast cancer.

The experience of making treatment decisions for women with early stage breast cancer: a diagrammatic representation.

Women who are making decisions about treatment for early stage breast cancer interact with a number of people when they are considering their treatment options and the impact breast cancer will have on their lives. Previous research has considered patient preferences for involvement in treatment decision-making and proposed factors that may influence breast cancer treatment decisions. However, to date, there has been a paucity of research focusing on the experience of making treatment decisions from the women's perspective. The aim of this paper is to describe the relationships between the women, the medical practitioners and other people, and to consider features that may be influential in the experience of making treatment decisions. Two models are proposed to represent concepts that are linked to the experience of making treatment decisions. The first model proposed has been formulated to represent factors that may influence the treatment decision. The second model highlights aspects of the women's lives that may be affected. This paper discusses concepts that are presented in the conceptual models and makes suggestions for future studies relating to the experience of making treatment decisions for women with breast cancer.