Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.

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.

Frontline Health Care Workers' Mental Health and Well-Being During the First Year of the COVID-19 Pandemic: Analysis of Interviews and Social Media Data.

BACKGROUND: The COVID-19 pandemic has shed light on fractures in health care systems worldwide and continues to have a significant impact, particularly in relation to the health care workforce. Frontline staff have been exposed to unprecedented strain, and delivering care during the pandemic has affected their safety, mental health, and well-being. OBJECTIVE: This study aimed to explore the experiences of health care workers (HCWs) delivering care in the United Kingdom during the COVID-19 pandemic to understand their well-being needs, experiences, and strategies used to maintain well-being (at individual and organizational levels). METHODS: We analyzed 94 telephone interviews with HCWs and 2000 tweets about HCWs' mental health during the first year of the COVID-19 pandemic. RESULTS: The results were grouped under 6 themes: redeployment, clinical work, and sense of duty; well-being support and HCW's coping strategies; negative mental health effects; organizational support; social network and support; and public and government support. CONCLUSIONS: These findings demonstrate the need for open conversations, where staff's well-being needs and the strategies they adopted can be shared and encouraged, rather than implementing top-down psychological interventions alone. At the macro level, the findings also highlighted the impact on HCW's well-being of public and government support as well as the need to ensure protection through personal protective equipment, testing, and vaccines for frontline workers.

Healthcare workers' perceptions and attitudes towards the UK's COVID-19 vaccination programme: a rapid qualitative appraisal.

OBJECTIVES: While there is research relating to perceptions of vaccines among healthcare workers (HCWs), the evidence base in relation to COVID-19 remains limited. The aim of this study was to explore HCWs' perceptions and attitudes towards vaccines and the COVID-19 vaccination programme in the UK, including their expectations and views on promoting vaccination to others. DESIGN: This study was designed as a rapid qualitative appraisal, integrating data from a review of UK policies and guidance on COVID-19 vaccination with data from in-depth semistructured telephone interviews with frontline HCWs in the UK. Data were analysed using framework analysis. PARTICIPANTS: Interviews were carried out with a purposive sample of HCWs from two large London-based hospital Trusts (n=24) and 24 government policies, and guidelines on the vaccination programme were reviewed. RESULTS: The level of uncertainty about the long-term safety of vaccines and efficacy against mutant strains made it difficult for HCWs to balance the benefits against the risks of vaccination. HCWs felt that government decisions on vaccine rollout had not been supported by evidence-based science, and this impacted their level of trust and confidence in the programme. The spread of misinformation online also impacted HCWs' attitudes towards vaccination, particularly among junior level and black, Asian and minority ethnic (BAME) HCWs. Most HCWs felt encouraged to promote vaccination to their patients, and the majority said they would advocate vaccination or engage in conversations about vaccination with others when relevant. CONCLUSION: In order to improve HCWs' trust and confidence in the UK's COVID-19 vaccination programme, there needs to be clarity about what is known and not known about the vaccines and transparency around the evidence-base supporting government decisions on vaccine rollout. Effort is also needed to dispel the spread of vaccine-related misinformation online and to address specific concerns, particularly among BAME and junior-level HCWs.

Optical coherence tomography angiography findings in Huntington's disease.

OBJECTIVES: To evaluate the retinal and choriocapillaris vascular networks in macular region and the central choroidal thickness (CCT) in patients affected by Huntington disease (HD), using optical coherence tomography angiography (OCTA) and enhanced depth imaging spectral-domain OCT (EDI SD-OCT). METHODS: We assessed the vessel density (VD) in superficial capillary plexus (SCP), deep capillary plexus (DCP), and choriocapillaris (CC) using OCTA, while CCT was measured by EDI SD-OCT. RESULTS: Sixteen HD patients (32 eyes) and thirteen healthy controls (26 eyes) were enrolled in this prospective study. No significant difference in retinal and choriocapillaris VD was found between HD patients and controls while CCT turned to be thinner in patients respect to controls. There were no significant relationships between OCTA findings and neurological parameters. CONCLUSION: The changes in choroidal structure provide useful information regarding the possible neurovascular involvement in the physiopathology of HD. Choroidal vascular network could be a useful parameter to evaluate the vascular impairment that occurs in this neurodegenerative disease.

Optical Coherence Tomography Angiography Findings in Fabry Disease.

BACKGROUND: Fabry disease (FD) is a X-linked recessive lysosomal storage disorder characterized by altered biodegradation of glycosphingolipids. It is a multisystem pathology, also involving ophthalmological systems that show modifications of the vessel wall due to glycosphingolipid deposits. Optical coherence tomography angiography (OCT-A) allows for an objective analysis of retinal microvasculature alterations, evaluating retinal vessel density in macular region. METHODS: A total of 54 FD patients (34 females, 20 males, mean age 44.1 ± 15.6 years) and 70 controls (36 females, 34 males, mean age 42.3 ± 15.6 years) were included in this study. We evaluated vessel density in different macular areas (whole image, fovea, and parafovea) of both the superficial capillary plexus (SCP) and of the deep capillary plexus (DCP). RESULTS: In the SCP there was a significantly lower vascular density in patients compared with controls in whole image (49.95 ± 5.17% vs. 51.99 ± 2.52%; p < 0.001), parafovea (52.01 ± 6.69% vs. 54.30 ± 2.61%; p = 0.002), and fovea (22.38 ± 9.01% vs. 29.31 ± 5.84%; p < 0.0001). In the DCP the vessel density was statistically increased in each macular area in patients compared with controls (54.82 ± 8.07% vs. 50.93 ± 5.46%; p = 0.005, 57.76 ± 7.26% vs. 53.59 ± 5.46%; p = 0.0001, and 39.75 ± 8.59% vs. 34.43 ± 8.68%; p < 0.0001 for whole image, parafovea, and fovea, respectively). CONCLUSION: OCT-A analysis showed that the macular vessel density was significantly reduced in the SCP and increased in the DCP in FD patients compared with controls. These findings, which might be a consequence of the alteration of vascular wall occurring in FD, support the hypothesis that the evaluation of early retinal microvascular network changes could be a useful tool in the clinical evaluation of the disease.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

BACKGROUND: People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. AIM: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. DESIGN: Qualitative study using in-depth interviews and analysed using thematic analysis. SETTING/PARTICIPANTS: Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. RESULTS: Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. CONCLUSION: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Family carers' experiences of the Admiral Nursing Service: a quantitative analysis of carer feedback.

OBJECTIVES: Family carers of people with dementia often experience difficulty in accessing information, services and adequate support. Admiral Nurses, registered nurses specialising in dementia, provide holistic and person-centred support to families living with dementia. This study assessed the effectiveness of the Admiral Nurses' approach from the perspective of family carers who had accessed their service. METHOD: A questionnaire was developed with input from family carers and Admiral Nurses and questions were based around the Admiral Nursing Standards. 685 questionnaires were sent out in total to carers in receipt of care from three different regions in England. RESULTS: 207 questionnaires (30.2% response rate) were analysed. Admiral Nurses' knowledge and skills and their interventions were found helpful by 81.5% and 82.6% of respondents, respectively (mean values). Respondents also rated them effective in developing rapport (96.5%, mean value) and recognising and supporting the needs of the dyad (85.8%, mean value). More varied views were expressed in relation to activities and stimulation for the person with dementia, and to advice around medications and their effects, with around a third (n = 57, 31% and n = 63, 33.9%, respectively) of respondents finding Admiral Nurses not helpful, whilst 24.6% (n = 46) thought so in relation to care coordination. A higher number of contacts with Admiral Nurses (5+) and carer gender (female) were significant predictors of carers' satisfaction. CONCLUSION: Whilst some aspects of supporting carers are performed less well from the carers' perspective, overall family carers in receipt of Admiral Nursing support perceived their family-centred approach as helpful/effective.

Quality end-of-life care for dementia: What have family carers told us so far? A narrative synthesis.

BACKGROUND: People with dementia do not always receive good quality end-of-life care, with undertreated pain, aggressive medical interventions and limited access to hospice care being common. Family carers often provide the majority of informal care for people with dementia, therefore may be best placed to comment on quality of care. AIM: We explored what quality end-of-life care for dementia is from the perspective of family carers. DESIGN: A review of qualitative evidence taking a systematic approach using a narrative synthesis with tabulation, textual description of studies and thematic analysis as tools, following the guidelines from the Economic and Social Research Council. DATA SOURCES: Keywords and subject headings were searched in MEDLINE, EMBASE, CINAHL, SCIE and PsycINFO for studies from 1990 in April 2012 and updated in May 2013. Reference lists were checked and citation searches undertaken. RESULTS: Eight studies were included. There was an overarching theme of 'A family's belief of death and their choice of treatment'. Three further themes were then identified to explain family carers' beliefs: the relationship with professionals as a core component of care quality; emotional and commitment pressures of caring and finally, family carers' ability to think about death and dying. CONCLUSION: It is difficult to define what constitutes high-quality end-of-life care for people with dementia from the perspective of family carers. Their views expressed in the literature appear to demonstrate more variation of preference of care and treatment and their uncertainty of this.

Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences.

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.

Quality palliative care for cancer and dementia in five European countries: some common challenges.

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.

Modelling the landscape of palliative care for people with dementia: a European mixed methods study.

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.