Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways

Health professionals' perspectives on information provision for patients with brain tumours and their families

A significant number of patients diagnosed with primary brain tumours report unmet information needs. Using concept mapping methodology, this study aimed to identify strategies for improving information provision, and to describe factors that health professionals understood to influence their provision of information to patients with brain tumours and their families. Concept mapping is a mixed-methods approach that uses statistical methods to represent participants' perceived relationships between elements as conceptual maps. These maps, and results of associated data collection and analyses, are used to extract concepts involved in information provision to these patients. Thirty health professionals working across a range of neuro-oncology roles and settings participated in the concept mapping process. Participants rated a care coordinator as the most important strategy for improving brain tumour care, with psychological support as a whole rated as the most important element of care. Five major themes were identified as facilitating information provision: health professionals' communication skills, style and attitudes; patients' needs and preferences; perceptions of patients' need for protection and initiative; rapport and continuity between patients and health professionals; and the nature of the healthcare system. Overall, health professionals conceptualised information provision as 'individualised', dependent on these interconnected personal and environmental factors

Uncertain diagnosis and prognosis in advanced melanoma: a qualitative study of the experiences of bereaved carers in a time of immune and targeted therapies

Recent advances in advanced melanoma therapies are associated with improved survival for some patients. How patients with diagnoses of advanced disease and their carers experience this expanding treatment paradigm, however, is not well understood.We explored bereaved carers' accounts of the trajectory of advanced melanoma involving treatment by immune or targeted therapies to build an understanding of their experiences of care relating to diagnosis and prognosis.A qualitative exploratory design, using methods drawn from grounded theory was adopted. Analyses drew on in-depth interviews with 20 bereaved carers from three metropolitan melanoma treatment centres in Australia. A flexible interview guide and a structured approach of concurrent data collection and analysis were applied.Carers described qualities of the experience including the shock of diagnosis after a sometimes-innocuous presentation with vague symptoms. They reported an unclear prognosis with complexity arising from interplay between an uncertain disease trajectory and often ambiguous expectations of outcomes of emerging immune and targeted therapies. Uncertainty dominated carers' experiences, increasing the complexity of care planning.Effective communication of an advanced melanoma diagnosis and prognosis is critical. Recognition of the uncertainty inherent in the benefit of immune and targeted therapies in a constructive manner may facilitate more timely and effective care planning conversations between patients, carers and medical specialists. This article is protected by copyright. All rights reserved

Are there differences in patterns of care for upper-limb and lower-limb lymphoedema provided by professionals specialising in lymphoedema treatment?

Background - Approximately 30% of all patients with breast cancer, up to 60% of patients with cancer of the vulva, and 20% of patients with other gynaecological or urological cancers will develop lymphoedema following treatment. Several workshops and conferences held in Australia and worldwide recommended improvements in the diagnosis and treatment of lymphoedema, but the extent to which this had found reflection in clinical practice is unknown. Methods - Sixty-three health professionals (response rate 92.6%) known to treat lymphoedema patients were interviewed by telephone to assess their socio-demographic characteristics, common ways of receiving referrals, treatment and advice provided to lymphoedema patients, confidence in treatment and to determine if these factors differed by health professionals background or for patients with upper-limb lymphoedema (ULL) or lowerlimb lymphoedema (LLL)). Results - Sixty-three percent of the health professionals reached were physiotherapists, the majority were university-trained and had treated patients for lymphoedema for 20 years or more. Ninety-five percent of health professionals used circumferential measurements to establish lymphoedema status, and most health professionals advised patients to avoid scratches and cuts (100%), insect bites (98.4%), sunburn (98.4%) and excessive exercise (65.1%) on the affected limb. Health professionals reported that patients with LLL were less likely to present within the first 3 months of being symptomatic (p < 0.01), and patients with LLL were more likely to present with swelling (p = 0.001), heaviness (p = 0.003), tightness (p = 0.007) and skin problems (p < 0.001) compared to patients with ULL. Treatment and advice differed according to health professionals background, but not location of lymphoedema (ULL vs LLL). Conclusions - This survey illustrates that improvements can still be made with regards to standardising assessment, advice and treatment across professional groups. There is also suggestion that further educational efforts seem necessary to improve the early detection of LLL

Using survey methods in telehealth research: a practical guide

Surveys are a common method for assessing patient and clinician perceptions, attitudes and outcomes of telehealth. However, inadequacies in both the conduct and reporting of survey studies are common in telehealth research. This article provides clinicians and researchers with practical guidance on the appropriate selection, use and reporting of survey tools for telehealth research. We identify common survey outcomes and instruments used in telehealth research, and methods to assess the validity and psychometric properties of survey tools. Enhancing the quality and reporting of telehealth research is important to improve our understanding of which telehealth-supported models of care improve outcomes and for which patient groups

Challenges and support for family caregivers of glioma patients

Glioma patients are not only confronted with the diagnosis and treatment of cancer, but often experience disease-specific symptoms that greatly affect everyday life. Common symptoms among patients include motor dysfunction, sensory loss, seizures, cognitive deficits, changes in behaviour and personality, mood issues, and fatigue. This review focuses on family caregivers, for whom dealing with the diagnosis and treatment of a brain tumour in their loved one while managing disease-specific symptoms can be challenging. Supportive interventions to assist caregivers have been reported, but high quality scientific evidence for the effectiveness of these programs is largely lacking. Further research is needed to determine how we can best support family caregivers to manage glioma patients' symptoms while maintaining their own health as a caregiver. Research is also required in evaluating the health economic benefits of support programs for caregivers, as better care for caregivers may potentially reduce overall healthcare costs