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Background In the UK, although 40% of patients with lung cancer are diagnosed following an emergency admission (EA), data is limited on their needs and experiences as they progress through diagnostic and treatment pathways. Methods Prospective data collection using medical records, questionnaires and in-depth interviews. Multivariate logistic regression explored associations between diagnosis following EA and aspects of interest. Questionnaire responses with 95% confidence intervals were compared with local and national datasets. A grounded theory approach identified patient and carer themes. Results Of 401 patients, 154 (38%) were diagnosed following EA; 37 patients and six carers completed questionnaires and 13 patients and 10 carers were interviewed. Compared to those diagnosed electively, EA patients adjusted results found no difference in treatment recommendation, treatment intent or place of death. Time to diagnosis, review, or treatment was 7–14 days quicker but fewer EA patients had a lung cancer nurse present at diagnosis (37% vs. 62%). Palliative care needs were high (median [IQR] 21 [13–25] distressing or bothersome symptoms/issues) and various information and support needs unmet. Interviews highlighted in particular, perceived delays in obtaining investigations/specialist referral and factors influencing success or failure of the cough campaign. Conclusions Presentation as an EA does not appear to confer any inherent disadvantage regarding progress through lung cancer diagnostic and treatment pathways. However, given the frequent combination of advanced disease, poor performance status and prognosis, together with the high level of need and reported short-fall in care, we suggest that a specialist palliative care assessment is routinely offered.

Background Lung cancer is the leading cause of death from cancer in England. About 40% of patients with lung cancer are diagnosed following an emergency admission (DFEA) to hospital. DFEA is more common in women, and more likely with increasing age and deprivation. Most have advanced disease and survival is poor, but little else is known about this group. The aim of this study is to obtain a detailed understanding of the characteristics, needs, experiences and outcomes of this group. Methods/Design This is a single centre study with quantitative and qualitative work packages (WP). WP1 gathers basic details about all patients diagnosed with lung cancer during a 12 month period, focusing on demographics, diagnostic and treatment pathways and selected outcomes. WP2 obtains information from those patients DFEA or, when unable, their carers, about their holistic needs and experiences, using the Sheffield Profile for Assessment and Referral to Care questionnaire and selected questions from the National Cancer Patient Experience Survey. WP3 uses in-depth qualitative interviews with patients and carers to obtain detailed accounts of their symptoms, help-seeking behaviours prior to admission and subsequent experiences of care. Discussion Relatively little is known about the experiences of lung cancer patients DFEA and this study will provide detailed information about their needs, characteristics, experiences and outcomes. It should identify areas in the diagnostic and treatment pathway where there is scope to improve the care provided to this group of patients and their carers. The findings will also inform the need for further focused research.

Purpose Compared to others, patients diagnosed with lung cancer following an emergency, unplanned admission to hospital (DFEA) have more advanced disease and poorer prognosis. Little is known about DFEA patients’ beliefs about cancer and its symptoms or about their help-seeking behaviours prior to admission. Methods As part of a larger single-centre, prospective mixed-methods study conducted in one University hospital, we undertook qualitative interviews with patients DFEA and their carers to obtain their understanding of symptoms and experiences of trying to access healthcare services before admission to hospital. Interviews were recorded and transcribed. Framework analysis was employed. Results Thirteen patients and 10 carers plus 3 bereaved carers took part in interviews. Three patient/carer dyads were interviewed together. Participants spoke about their symptoms and why they did not seek help sooner. They described complex and nuanced experiences. Some (n = 12) had what they recalled as the wrong symptoms for lung cancer and attributed them either to a pre-existing condition or to ageing. In other cases (n = 9), patients or carers realised with hindsight that their symptoms were signs of lung cancer, but at the time had made other attributions to account for them. In some cases (n = 3), a sudden onset of symptoms was reported. Some GPs (n = 6) were also reported to have made incorrect attributions about cause. Conclusion Late diagnosis meant that patients DFEA needed palliative support sooner after diagnosis than patients not DFEA. Professionals and lay people interpret health and illness experiences differently.

Clarithromycin may improve cachexia and survival in non-small cell lung cancer (NSCLC), but adequately controlled data are lacking. This study was undertaken primarily to inform the feasibility and scale of a phase III trial. Eligible consenting patients with stage IV NSCLC and cachexia were to be randomized to receive either clarithromycin 250 mg twice daily or placebo for eight weeks. Aspects of trial feasibility recorded included numbers eligible, approached and recruited, together with adherence and completion of treatment and assessments. Over 6 months, none of 125 patients identified fulfilled the entry criteria. The commonest reasons for ineligibility were the use of an excluded concurrent drug (45, 36%), brain metastases (22, 18%), poor performance status (21, 17%) and current chemotherapy (15, 12%). A phase III trial of clarithromycin using these entry criteria is not feasible in this setting. Other macrolides that have a lower risk of a drug–drug interaction may be more practical to pursue.

Purpose Current methods of dosing platinum-based chemotherapy are suboptimal. Potentially, taking lean body mass into account may help. To inform the design of a future study, we first examined the feasibility and acceptability of such an approach using dual-energy X-ray absorptiometry (DEXA) and explored aspects suggestive of over- and under-dosing. Methods Patients with lung cancer offered platinum-based chemotherapy over 1 year were identified and, if eligible, invited to take part in a prospective feasibility study. Questionnaires examined acceptability of the DEXA scan and of a future study that randomized between traditional dosing and one adjusted according to body composition. Dose-limiting toxicity (DLT) and a lack of neutropenia explored potential over- and under-dosing, respectively. Results Of the 173 patients offered chemotherapy, 123 (71%) were ineligible, mostly because of failing entry criteria (84, 49%). Of the 50 approached, 18 (36%) participated, most receiving carboplatin, with 17 providing data. All found a DEXA scan acceptable; other assessments were fully completed, except nadir and pre-chemotherapy blood counts. Most (94%) were prepared to take part in a future study, although the additional hospital visits for a nadir blood count were unpopular with some. Five (29%) patients experienced six episodes of DLT which resulted in discontinuation (3), dose reduction (2) or change to a less toxic regimen (1). Nine (60%) patients experienced either no (2) or inconsistent (7) neutropenia. Conclusions A randomized trial appears acceptable and feasible in patients receiving carboplatin. Adjustment of our entry criteria and avoiding a hospital visit for a nadir blood count should aid recruitment.

Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS). Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.