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

Improving the identification of cancer in young people: A scoping review

peerreview_statement: The publishing and review policy for this title is described in its Aims & Scope. aims_and_scope_url: http://www.tandfonline.com/action/journalInformation?show=aimsScope&journalCode=terq2

Molecular testing for Lynch syndrome in people with colorectal cancer: systematic reviews and economic evaluation

This is the final version of the article. Available from the publisher via the DOI in this record.BACKGROUND: Inherited mutations in deoxyribonucleic acid (DNA) mismatch repair (MMR) genes lead to an increased risk of colorectal cancer (CRC), gynaecological cancers and other cancers, known as Lynch syndrome (LS). Risk-reducing interventions can be offered to individuals with known LS-causing mutations. The mutations can be identified by comprehensive testing of the MMR genes, but this would be prohibitively expensive in the general population. Tumour-based tests - microsatellite instability (MSI) and MMR immunohistochemistry (IHC) - are used in CRC patients to identify individuals at high risk of LS for genetic testing. MLH1 (MutL homologue 1) promoter methylation and BRAF V600E testing can be conducted on tumour material to rule out certain sporadic cancers. OBJECTIVES: To investigate whether testing for LS in CRC patients using MSI or IHC (with or without MLH1 promoter methylation testing and BRAF V600E testing) is clinically effective (in terms of identifying Lynch syndrome and improving outcomes for patients) and represents a cost-effective use of NHS resources. REVIEW METHODS: Systematic reviews were conducted of the published literature on diagnostic test accuracy studies of MSI and/or IHC testing for LS, end-to-end studies of screening for LS in CRC patients and economic evaluations of screening for LS in CRC patients. A model-based economic evaluation was conducted to extrapolate long-term outcomes from the results of the diagnostic test accuracy review. The model was extended from a model previously developed by the authors. RESULTS: Ten studies were identified that evaluated the diagnostic test accuracy of MSI and/or IHC testing for identifying LS in CRC patients. For MSI testing, sensitivity ranged from 66.7% to 100.0% and specificity ranged from 61.1% to 92.5%. For IHC, sensitivity ranged from 80.8% to 100.0% and specificity ranged from 80.5% to 91.9%. When tumours showing low levels of MSI were treated as a positive result, the sensitivity of MSI testing increased but specificity fell. No end-to-end studies of screening for LS in CRC patients were identified. Nine economic evaluations of screening for LS in CRC were identified. None of the included studies fully matched the decision problem and hence a new economic evaluation was required. The base-case results in the economic evaluation suggest that screening for LS in CRC patients using IHC, BRAF V600E and MLH1 promoter methylation testing would be cost-effective at a threshold of £20,000 per quality-adjusted life-year (QALY). The incremental cost-effectiveness ratio for this strategy was £11,008 per QALY compared with no screening. Screening without tumour tests is not predicted to be cost-effective. LIMITATIONS: Most of the diagnostic test accuracy studies identified were rated as having a risk of bias or were conducted in unrepresentative samples. There was no direct evidence that screening improves long-term outcomes. No probabilistic sensitivity analysis was conducted. CONCLUSIONS: Systematic review evidence suggests that MSI- and IHC-based testing can be used to identify LS in CRC patients, although there was heterogeneity in the methods used in the studies identified and the results of the studies. There was no high-quality empirical evidence that screening improves long-term outcomes and so an evidence linkage approach using modelling was necessary. Key determinants of whether or not screening is cost-effective are the accuracy of tumour-based tests, CRC risk without surveillance, the number of relatives identified for cascade testing, colonoscopic surveillance effectiveness and the acceptance of genetic testing. Future work should investigate screening for more causes of hereditary CRC and screening for LS in endometrial cancer patients. STUDY REGISTRATION: This study is registered as PROSPERO CRD42016033879. FUNDING: The National Institute for Health Research Health Technology Assessment programme.Funding for this study was provided by the Health Technology Assessment programme of the National Institute for Health Researc

Association between age and access to immediate breast reconstruction in women undergoing mastectomy for breast cancer.

BACKGROUND: National guidelines state that patients with breast cancer undergoing mastectomy in England should be offered immediate breast reconstruction (IR), unless precluded by their fitness for surgery or the need for adjuvant therapies. METHODS: A national study investigated factors that influenced clinicians' decision to offer IR, and collected data on case mix, operative procedures and reconstructive decision-making among women with breast cancer having a mastectomy with or without IR in the English National Health Service between 1 January 2008 and 31 March 2009. Multivariable logistic regression was used to examine the relationship between whether or not women were offered IR and their characteristics (tumour burden, functional status, planned radiotherapy, planned chemotherapy, perioperative fitness, obesity, smoking status and age). RESULTS: Of 13 225 women, 6458 (48·8 per cent) were offered IR. Among factors the guidelines highlighted as relevant to decision-making, the three most strongly associated with the likelihood of an offer were tumour burden, planned radiotherapy and performance status. Depending on the combination of their values, the probability of an IR offer ranged from 7·4 to 85·1 per cent. A regression model that included all available factors discriminated well between whether or not women were offered IR (c-statistic 0·773), but revealed that increasing age was associated with a fall in the probability of an IR offer beyond that expected from older patients' tumour and co-morbidity characteristics. CONCLUSION: Clinicians are broadly following guidance on the offer of IR, except with respect to patients' age

Comfort vs risk: a grounded theory about female adolescent behaviour in the sun.

AIMS AND OBJECTIVES: To generate a grounded theory about female adolescent behaviour in the sun. BACKGROUND: Nurses have key roles in health promotion and skin cancer prevention. Adolescents' resistance to sun safety messages and their vulnerability to sunburn are of concern internationally. Understanding why young women do as they do in the sun may enhance skin cancer prevention, but their behaviour has not been explained before in the UK. DESIGN: The study incorporated a qualitative grounded theory design using the approach of Glaser. METHODS: Qualitative data were gleaned from group and one-to-one, semi-structured interviews with 20 female participants aged 14-17, research memos and literature. Sampling was purposive and theoretical. Data collection, analysis and theory generation occurred concurrently. Data were analysed using the constant comparative method. Data collection ended when a substantive theory had been generated. RESULTS: Data analysis revealed five categories of findings: fitting in, being myself, being physically comfortable, slipping up and being comfortable (the core category). The theory generated around the core explains how young women direct their sun-related activities towards meeting their physical and psychosocial comfort needs. CONCLUSIONS: A contribution of this research is the grounded theory explaining the behaviour of young women in the sun. Further, the theory challenges assumptions that female adolescents necessarily take risks; it explains their sun-related activities in terms of comfort. The theory extends findings from other researchers' descriptive qualitative studies and also appears to apply to young people in countries other than the UK. RELEVANCE TO CLINICAL PRACTICE: Understanding the sun-related activity of young women in terms of physical and psychosocial comfort may help nurses to develop new approaches to skin cancer prevention. These could complement existing messages and humanise health promotion

Preferred and actual place of death in haematological malignancy

OBJECTIVES: Home is considered the preferred place of death for many, but patients with haematological malignancies (leukaemias, lymphomas and myeloma) die in hospital more often than those with other cancers and the reasons for this are not wholly understood. We examined preferred and actual place of death among people with these diseases. METHODS: The study is embedded within an established population-based cohort of patients with haematological malignancies. All patients diagnosed at two of the largest hospitals in the study area between May 2005 and April 2008 with acute myeloid leukaemia, diffuse large B-cell lymphoma or myeloma, who died before May 2010 were included. Data were obtained from medical records and routine linkage to national death records. RESULTS: 323 deceased patients were included. A total of 142 (44%) had discussed their preferred place of death; 45.8% wanted to die at home, 28.2% in hospital, 16.9% in a hospice, 5.6% in a nursing home and 3.5% were undecided; 63.4% of these died in their preferred place. Compared to patients with evidence of a discussion, those without were twice as likely to have died within a month of diagnosis (14.8% vs 29.8%). Overall, 240 patients died in hospital; those without a discussion were significantly more likely to die in hospital than those who had (p≤0.0001). Of those dying in hospital, 90% and 75.8% received haematology clinical input in the 30 and 7 days before death, respectively, and 40.8% died in haematology areas. CONCLUSIONS: Many patients discussed their preferred place of death, but a substantial proportion did not and hospital deaths were common in this latter group. There is scope to improve practice, particularly among those dying soon after diagnosis. We found evidence that some people opted to die in hospital; the extent to which this compares with other cancers is of interest

Surface-enhanced Raman spectroscopy study of 4-ATP on gold nanoparticles for basal cell carcinoma fingerprint detection

The surface-enhanced Raman signals of 4-aminothiophenol (4-ATP) attached to the surface of colloidal gold nanoparticles with size distribution of 2 to 5 nm were used as a labeling agent to detect basal cell carcinoma (BCC) of the skin. The enhanced Raman band at 1075 cm-1 corresponding to the C-S stretching vibration in 4-ATP was observed during attachment to the surface of the gold nanoparticles. The frequency and intensity of this band did not change when the colloids were conjugated with BerEP4 antibody, which specifically binds to BCC. We show the feasibility of imaging BCC by surface-enhanced Raman spectroscopy, scanning the 1075 cm-1 band to detect the distribution of 4ATP-coated gold nanoparticles attached to skin tissue ex vivo

Testing innovative strategies to reduce the social gradient in the uptake of bowel cancer screening: a programme of four qualitatively enhanced randomised controlled trial

Background: Bowel cancer screening reduces cancer-specific mortality. There is a socioeconomic gradient in the uptake of the English NHS Bowel Cancer Screening Programme (BCSP), which may lead to inequalities in cancer outcomes. Objective: To reduce socioeconomic inequalities in uptake of the NHS BCSP’s guaiac faecal occult blood test (gFOBt) without compromising uptake in any socioeconomic group. Design: Workstream 1 explored psychosocial determinants of non-uptake of gFOBt in focus groups and interviews. Workstream 2 developed and tested four theoretically based interventions: (1) ‘gist’ information, (2) a ‘narrative’ leaflet, (3) ‘general practice endorsement’ (GPE) and (4) an ‘enhanced reminder’ (ER). Workstream 3 comprised four national cluster randomised controlled trials (RCTs) of the cost-effectiveness of each intervention. Methods: Interventions were co-designed with user panels, user tested using interviews and focus groups, and piloted with postal questionnaires. RCTs compared ‘usual care’ (existing NHS BCSP invitations) with usual care plus each intervention. The four trials tested: (1) ‘gist’ leaflet (n = 163,525), (2) ‘narrative’ leaflet (n = 150,417), (3) GPE on the invitation letter (n = 265,434) and (4) ER (n = 168,480). Randomisation was based on day of mailing of the screening invitation. The Index of Multiple Deprivation (IMD) score associated with each individual’s home address was used as the marker of socioeconomic circumstances (SECs). Change in the socioeconomic gradient in uptake (interaction between treatment group and IMD quintile) was the primary outcome. Screening uptake was defined as the return of a gFOBt kit within 18 weeks of the invitation that led to a ‘definitive’ test result of either ‘normal’ (i.e. no further investigation required) or ‘abnormal’ (i.e. requiring referral for further testing). Difference in overall uptake was the secondary outcome. Results: The gist and narrative trials showed no effect on the SECs gradient or overall uptake (57.6% and 56.7%, respectively, compared with 57.3% and 58.5%, respectively, for usual care; all p-values > 0.05). GPE showed no effect on the gradient (p = 0.5) but increased overall uptake [58.2% vs. 57.5% in usual care, odds ratio (OR) = 1.07, 95% confidence interval (CI) 1.04 to 1.10; p < 0.0001]. ER showed a significant interaction with SECs (p = 0.005), with a stronger effect in the most deprived IMD quintile (14.1% vs. 13.3% in usual care, OR = 1.11, 95% CI 1.04 to 1.20; p = 0.003) than the least deprived (34.7% vs. 34.9% in usual care OR = 1.00, 95% CI 0.94 to 1.06; p = 0.98), and higher overall uptake (25.8% vs. 25.1% in usual care, OR = 1.07, 95% CI 1.03 to 1.11; p = 0.001). All interventions were inexpensive to provide. Limitations: In line with NHS policy, the gist and narrative leaflets supplemented rather than replaced existing NHS BCSP information. This may have undermined their effect. Conclusions: Enhanced reminder reduced the gradient and modestly increased overall uptake, whereas GPE increased overall uptake but did not reduce the gradient. Therefore, given their effectiveness and very low cost, the findings suggest that implementation of both by the NHS BCSP would be beneficial. The gist and narrative results highlight the challenge of achieving equitable delivery of the screening offer when all communication is written; the format is universal and informed decision-making mandates extensive medical information. Future work: Socioculturally tailored research to promote communication about screening with family and friends should be developed and evaluated. Trial registration: Current Controlled Trials ISRCTN74121020. Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 5, No. 8. See the NIHR Journals Library website for further project information

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic. Aim: To investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life. Design and data collection: Qualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total. Setting: General practices and community care settings in the East Midlands of England. Findings: The study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare. Conclusions: Advance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity. Future work: Attention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care. Funding: The National Institute for Health Research Health Services and Delivery Research programme

Patterns of diagnoses among children and young adults with life-limiting conditions: a secondary analysis of a national dataset

Background: Numbers of children and young people with life-limiting conditions are rising, and increasing lifespans require young adults with life-limiting condition to transit to appropriate adult services. Aim: To describe the prevalence of life-limiting condition in children and young adults by age, sex, diagnostic group, ethnicity and deprivation. Design: A secondary analysis of the English Hospital Episode Statistics dataset was undertaken to calculate prevalence per 10,000 population. Setting/participants: Individuals (040 years) with life-limiting conditions were identified within an English Hospital Episode Statistics dataset by applying a customised coding framework of International Classification of Diseases, 10th Edition, disease codes. Results: There were 462,962 inpatient hospital admissions for 92,129 individual patients with a life-limiting condition. Prevalence-byage group curve is U shaped with the highest overall prevalence in the under 1-year age group (127.3 per 10,000), decreasing until age 2125 years (21.1 per 10,000) before rising steeply to reach 55.5 per 10,000 in the 3640 -year age group. The distribution by diagnostic group varies by age: congenital anomalies are most prevalent in children until age 1620 years with oncology diagnoses then becoming the most prevalent. Conclusion: Non-malignant diagnoses are common in children and young adults, and services that have historically focussed on oncological care will need to widen their remit to serve this population of life-limited patients. The diagnosis determining a patients lifelimiting condition will strongly influence their palliative care service needs. Therefore, understanding the diagnostic and demographic breakdown of this population of teenagers and young adults is crucial for planning future service provision