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

BACKGROUND: Recent advances in advanced melanoma therapies are associated with improved survival for some patients. However, how patients with diagnoses of advanced disease and their carers experience this expanding treatment paradigm is not well understood. OBJECTIVES: To explore 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. METHODS: 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 structured approach to concurrent data collection and analysis were applied. RESULTS: 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. CONCLUSIONS: 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.

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.

Development and piloting of a brain tumour-specific question prompt list.

The objective of this research was to develop a question prompt list aimed at increasing question asking and reducing the unmet information needs of adults with primary brain tumours, and to pilot the question prompt list to determine its suitability for the intended population. Thematic analysis of existing resources was used to create a draft which was refined via interviews with 12 brain tumour patients and six relatives, readability testing and review by health professionals. A non-randomised before-after pilot study with 20 brain tumour patients was used to assess the acceptability and usefulness of the question prompt list, compared with a 'standard brochure', and the feasibility of evaluation strategies. The question prompt list developed covered seven main topics (diagnosis, prognosis, symptoms and changes, treatment, support, after treatment finishes and the health professional team). Pilot study participants provided with the question prompt list agreed that it was helpful (7/7), contained questions that were useful to them (7/7) and prompted them to ask their medical oncologist questions (5/7). The question prompt list is acceptable to patients and contains questions relevant to them. Research is now needed to assess its effectiveness in increasing question asking and reducing unmet information needs.

Treatment for upper-limb and lower-limb lymphedema by professionals specializing in lymphedema care.

Up to 60% of patients with cancer of the vulva, and between 20 and 30% of patients with breast or abdominal cancers may develop lymphedema following treatment. The aims of this study were to assess health professionals' knowledge about treatment, diagnostic procedures, advice and confidence in treatment of patients with either upper-limb (ULL) or lower-limb lymphoedema (LLL), and whether these differed by health professionals' background or for patients with ULL compared with LLL. A cross-sectional telephone interview was undertaken in 2006, of 63 health professionals (response rate 92.6%) known to treat lymphedema. Sixty-three per cent of the health professionals were physiotherapists; the majority were university-trained, with 20 years' experience or more. Ninety-five per cent of health professionals used circumferential measurements to establish lymphedema status, and most health professionals advised avoiding scratches and cuts (100%), insect bites (98.4%), sunburn (98.4%) and excessive exercise (65.1%) on the affected limb. Health professionals reported that compared with patients with LLL, patients with ULL were more likely to present within the first 3 months of being symptomatic (P < 0.01). 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 with patients with ULL. Treatment and advice differed according to health professionals' background, but not location of lymphedema (ULL vs. LLL). Assessment, treatment and advice for lymphedema vary across professional groups. Our results suggest that improvements should be attempted in the early detection of lymphedema, in particular of LLL among cancer patients.