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Simple Summary: Sarcomas are uncommon cancers growing in bones and soft tissue. As they are uncommon, we know less about them. Patients with sarcoma take longer to be diagnosed. This study examines what 78 people with different types of sarcomas told us about being diagnosed. We found out that approximately 7/10 people go to their General Practitioner (GP) first and do this within about 2 weeks of noticing something is wrong; however, those aged 13–24 years waited longer, at just over 4 weeks. Most people took approximately 3 months from noticing a symptom to being diagnosed, while those with soft tissue sarcoma took 5 months. More research is needed to help us diagnose sarcomas more quickly. Patients with sarcoma often report prolonged time to diagnosis, which is attributed to the rarity of sarcoma and the low awareness of pre-diagnostic signs and symptoms. Aims: To describe patients' experiences of pre-diagnostic signs/symptoms and pathways to diagnosis, including where help was sought, and the processes involved. Methods: Mixed methods involving quantitative, qualitative and inductive thematic analyses using novel process mapping of patient journey data, as reported by the patients. We examined the time from symptom onset to first professional presentation (patient interval, PI), first consultation to diagnostic biopsy, first consultation to diagnosis (diagnostic interval) and first presentation to diagnosis (total interval). Results: A total of 87 interviews were conducted over 5 months in 2017. Of these, 78 (40 males/38 females) were included. The sarcoma subtypes were bone (n = 21), soft tissue (n = 41), head and neck (n = 9) and gastro-intestinal (GIST; n = 7). Age at diagnosis was 13–24 (n = 7), 25–39 (n = 23), 40–64 (n = 34) and 65+ (n = 14) years. The median PI was 13 days (1–4971) and similar between sarcoma subtypes, with the exception of GIST (mPI = 2 days, (1–60). The longest mPI (31 days, range 4–762) was for those aged 13–24 years. The median diagnostic interval was 87.5 (range 0–5474 days). A total of 21 patients were misdiagnosed prior to diagnosis and symptoms were commonly attributed to lifestyle factors. Conclusions: Prolonged times to diagnosis were experienced by the majority of patients in our sample. Further research into the evolution of pre-diagnostic sarcoma symptoms is required to inform awareness interventions. [ABSTRACT FROM AUTHOR]

Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews ( n = 7 and n = 6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway. [ABSTRACT FROM AUTHOR]

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion: A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary: The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. [ABSTRACT FROM AUTHOR]