Lung cancer diagnosed following emergency admission: a mixed methods study protocol to improve understanding of patients’ characteristics, needs, experiences and outcomes

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

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study

This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers’ perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers

Autism and Intellectual Disability Are Differentially Related to Sociodemographic Background at Birth

Background: Research findings investigating the sociodemographics of autism spectrum disorder (ASD) have been inconsistent and rarely considered the presence of intellectual disability (ID). Methods: We used population data on Western Australian singletons born from 1984 to 1999 (n = 398,353) to examine the sociodemographic characteristics of children diagnosed with ASD with or without ID, or ID without ASD compared with non-affected children. Results: The profiles for the four categories examined, mild-moderate ID, severe ID, ASD without ID and ASD with ID varied considerably and we often identified a gradient effect where the risk factors for mild-moderate ID and ASD without ID were at opposite extremes while those for ASD with ID were intermediary. This was demonstrated clearly with increased odds of ASD without ID amongst older mothers aged 35 years and over (odds ratio (OR) = 1.69 [CI: 1.18, 2.43]), first born infants (OR = 2.78; [CI: 1.67, 4.54]), male infants (OR = 6.57 [CI: 4.87, 8.87]) and increasing socioeconomic advantage. In contrast, mild-moderate ID was associated with younger mothers aged less than 20 years (OR = 1.88 [CI: 1.57, 2.25]), paternal age greater than 40 years (OR = 1.59 [CI: 1.36, 1.86]), Australian-born and Aboriginal mothers (OR = 1.60 [CI: 1.41, 1.82]), increasing birth order and increasing social disadvantage (OR = 2.56 [CI: 2.27, 2.97]). Mothers of infants residing in regional or remote areas had consistently lower risk of ASD or ID and may be linked to reduced access to services or underascertainment rather than a protective effect of location. Conclusions: The different risk profiles observed between groups may be related to aetiological differences or ascertainment factors or both. Untangling these pathways is challenging but an urgent public health priority in view of the supposed autism epidemic

Investigating Patient Outcome Measures in Mental Health CHE Research Paper 48Investigating Patient Outcome Measures in Mental Health

CHE Discussion Papers (DPs) began publication in 1983 as a means of making current research material more widely available to health economists and other potential users. So as to speed up the dissemination process, papers were originally published by CHE and distributed by post to a worldwide readership. The new CHE Research Paper series takes over that function and provides access to current research output via web-based publication, although hard copy will continue to be available (but subject to charge). Acknowledgements This research was funded by the OHE Commission on NHS Productivity. I should like to thank all the interviewees at the various organisations whom I spoke to and who willingly shared their experience and expertise with me for this research. In particular I would also lik