Can we do better? A qualitative study in the East of England investigating patient experience and acceptability of using the faecal immunochemical test in primary care.

OBJECTIVES: The faecal immunochemical test (FIT) is increasingly used in UK primary care to triage patients presenting with symptoms and at different levels of colorectal cancer risk. Evidence is scarce on patients' views of using FIT in this context. We aimed to explore patients' care experience and acceptability of using FIT in primary care. DESIGN: A qualitative semi-structured interview study. Interviews were conducted via Zoom between April and October 2020. Transcribed recordings were analysed using framework analysis. SETTING: East of England general practices. PARTICIPANTS: Consenting patients (aged ≥40 years) who presented in primary care with possible symptoms of colorectal cancer, and for whom a FIT was requested, were recruited to the FIT-East study. Participants were purposively sampled for this qualitative substudy based on age, gender and FIT result. RESULTS: 44 participants were interviewed with a mean age 61 years, and 25 (57%) being men: 8 (18%) received a positive FIT result. Three themes and seven subthemes were identified. Participants' familiarity with similar tests and perceived risk of cancer influenced test experience and acceptability. All participants were happy to do the FIT themselves and to recommend it to others. Most participants reported that the test was straightforward, although some considered it may be a challenge to others. However, test explanation by healthcare professionals was often limited. Furthermore, while some participants received their results quickly, many did not receive them at all with the common assumption that 'no news is good news'. For those with a negative result and persisting symptoms, there was uncertainty about any next steps. CONCLUSIONS: While FIT is acceptable to patients, elements of communication with patients by the healthcare system show potential for improvement. We suggest possible ways to improve the FIT experience, particularly regarding communication about the test and its results.

Diagnostic Performance of Biomarkers for Bladder Cancer Detection Suitable for Community and Primary Care Settings: A Systematic Review and Meta-Analysis.

Evidence on the use of biomarkers to detect bladder cancer in the general population is scarce. This study aimed to systematically review evidence on the diagnostic performance of biomarkers which might be suitable for use in community and primary care settings [PROSPERO Registration: CRD42021258754]. Database searches on MEDLINE and EMBASE from January 2000 to May 2022 resulted in 4914 unique citations, 44 of which met inclusion criteria. Included studies reported on 112 biomarkers and combinations. Heterogeneity of designs, populations and outcomes allowed for the meta-analysis of three biomarkers identified in at least five studies (NMP-22, UroVysion, uCyt+). These three biomarkers showed similar discriminative ability (adjusted AUC estimates ranging from 0.650 to 0.707), although for NMP-22 and UroVysion there was significant unexplained heterogeneity between included studies. Narrative synthesis revealed the potential of these biomarkers for use in the general population based on their reported clinical utility, including effects on clinicians, patients, and the healthcare system. Finally, we identified some promising novel biomarkers and biomarker combinations (N < 3 studies for each biomarker/combination) with negative predictive values of ≥90%. These biomarkers have potential for use as a triage tool in community and primary care settings for reducing unnecessary specialist referrals. Despite promising emerging evidence, further validation studies in the general population are required at different stages within the diagnostic pathway.

Who are the patients being offered the faecal immunochemical test in routine English general practice, and for what symptoms? A prospective descriptive study.

OBJECTIVES: The faecal immunochemical test (FIT) was introduced to triage patients with lower-risk symptoms of colorectal cancer (CRC) in English primary care in 2018. While there is growing evidence on its utility to triage patients in this setting, evidence is still limited on how official FIT guidance is being used, for which patients and for what symptoms. We aimed to investigate the use of FIT in primary care practice for lower-risk patients who did not immediately meet criteria for urgent referral. DESIGN: A prospective, descriptive study of symptomatic patients offered a FIT in primary care between January and June 2020. SETTING: East of England general practices. PARTICIPANTS: Consenting patients (aged ≥40 years) who were seen by their general practitioners (GPs) with symptoms of possible CRC for whom a FIT was requested. We excluded patients receiving a FIT for asymptomatic screening purposes, or patients deemed by GPs as lacking capacity for informed consent. Data were obtained via patient questionnaire, medical and laboratory records. PRIMARY AND SECONDARY OUTCOME MEASURES: FIT results (10 µg Hb/g faeces defined a positive result); patient sociodemographic and clinical characteristics; patient-reported and GP-recorded symptoms, symptom severity and symptom agreement between patient and GP (% and kappa statistics). RESULTS: Complete data were available for 310 patients, median age 70 (IQR 61-77) years, 53% female and 23% FIT positive. Patients most commonly reported change in bowel habit (69%) and fatigue (57%), while GPs most commonly recorded abdominal pain (25%) and change in bowel habit (24%). Symptom agreement ranged from 44% (fatigue) to 80% (unexplained weight loss). Kappa agreement was universally low across symptoms. CONCLUSION: Almost a quarter of this primary care cohort of symptomatic patients with FIT testing were found to be positive. However, there was low agreement between patient-reported and GP-recorded symptoms. This may impact cancer risk assessment and optimal patient management in primary care.

Impact of the COVID-19 pandemic on cancer assessment in primary care: a qualitative study of GP views.

BACKGROUND: Early diagnosis is key to improve cancer outcomes, and most cancers are diagnosed in primary care after initial symptomatic presentation. Emerging evidence suggests an increase in avoidable cancer deaths owing to the COVID-19 pandemic. AIM: To understand GPs' views on the impact of the COVID-19 pandemic on the clinical assessment of possible cancer. DESIGN & SETTING: A qualitative semi-structured interview study with GPs from the East of England. METHOD: GPs were purposively sampled based on age, sex, and years of experience. Interviews were conducted via Zoom or Microsoft Teams in August and September 2020. Transcribed recordings were analysed inductively using thematic analysis. The Model of Pathways to Treatment guided the analysis. RESULTS: Three themes were identified across 23 interviews on GP views on the impact of: (1) changes in patient help-seeking behaviour on symptoms at presentation; (2) remote consultations on managing patients with possible cancer symptoms; and (3) the COVID-19 pandemic on triaging and referring patients with possible cancer. There were positive changes to practice, but concerns were raised about the adequacy of remote consultations for assessing symptoms. Some GPs reported delayed cancer diagnoses, and uncertainty about how backlog in referrals would be managed. CONCLUSION: This study provides new evidence on the impact of the COVID-19 pandemic on assessing symptomatic patients. Recommendations are made to inform safe and effective primary care clinical practice. Urgent action is needed to mitigate the impact of the COVID-19 pandemic, and ensure appropriate symptomatic assessment now and in the future.

Identifying Novel Biomarkers Ready for Evaluation in Low-Prevalence Populations for the Early Detection of Lower Gastrointestinal Cancers: A Systematic Review and Meta-Analysis.

INTRODUCTION: Lower gastrointestinal (GI) cancers are a major cause of cancer deaths worldwide. Prognosis improves with earlier diagnosis, and non-invasive biomarkers have the potential to aid with early detection. Substantial investment has been made into the development of biomarkers; however, studies are often carried out in specialist settings and few have been evaluated for low-prevalence populations. METHODS: We aimed to identify novel biomarkers for the detection of lower GI cancers that have the potential to be evaluated for use in primary care. MEDLINE, Embase, Emcare and Web of Science were systematically searched for studies published in English from January 2000 to October 2019. Reference lists of included studies were also assessed. Studies had to report on measures of diagnostic performance for biomarkers (single or in panels) used to detect colorectal or anal cancers. We included all designs and excluded studies with fewer than 50 cases/controls. Data were extracted from published studies on types of biomarkers, populations and outcomes. Narrative synthesis was used, and measures of specificity and sensitivity were meta-analysed where possible. RESULTS: We identified 142 studies reporting on biomarkers for lower GI cancers, for 24,844 cases and 45,374 controls. A total of 378 unique biomarkers were identified. Heterogeneity of study design, population type and sample source precluded meta-analysis for all markers except methylated septin 9 (mSEPT9) and pyruvate kinase type tumour M2 (TuM2-PK). The estimated sensitivity and specificity of mSEPT9 was 80.6% (95% CI 76.6-84.0%) and 88.0% (95% CI 79.1-93.4%) respectively; TuM2-PK had an estimated sensitivity of 81.6% (95% CI 75.2-86.6%) and specificity of 80.1% (95% CI 76.7-83.0%). CONCLUSION: Two novel biomarkers (mSEPT9 and TuM2-PK) were identified from the literature with potential for use in lower-prevalence populations. Further research is needed to validate these biomarkers in primary care for screening and assessment of symptomatic patients.

Recognising Colorectal Cancer in Primary Care.

Colorectal cancer (CRC) is the third most common cancer worldwide. Primary care professionals can play an important role in both prevention and early detection of CRC. Most CRCs are attributed to modifiable lifestyle factors, which can be addressed within primary care, and promotion of population-based screening programmes can aid early cancer detection in asymptomatic patients. Primary care professionals have a vital role in clinically assessing patients presenting with symptoms that may indicate cancer, as most patients with CRC first present with symptoms. These assessments are often challenging-many of the symptoms of CRC are non-specific and commonly occur in patients presenting with non-malignant disease. The range of options for investigating symptomatic patients in primary care is rapidly growing. Simple tests, such as faecal immunochemical testing (FIT), are now being used to guide decisions around referral for more invasive tests, such as colonoscopy, while direct access to specialist investigations is also becoming more common. Clinical decision support tools (CDSTs) which calculate cancer risk based on symptomatology, patient characteristics and test results can provide an additional resource to guide decisions on further investigation. This article explores the challenges of CRC prevention and detection from the primary care perspective, discusses current evidence-based approaches for CRC detection used in primary care (with examples from UK guidelines), and highlights emerging research which may likely alter practice in the future.

Artificial Intelligence Techniques That May Be Applied to Primary Care Data to Facilitate Earlier Diagnosis of Cancer: Systematic Review.

BACKGROUND: More than 17 million people worldwide, including 360,000 people in the United Kingdom, were diagnosed with cancer in 2018. Cancer prognosis and disease burden are highly dependent on the disease stage at diagnosis. Most people diagnosed with cancer first present in primary care settings, where improved assessment of the (often vague) presenting symptoms of cancer could lead to earlier detection and improved outcomes for patients. There is accumulating evidence that artificial intelligence (AI) can assist clinicians in making better clinical decisions in some areas of health care. OBJECTIVE: This study aimed to systematically review AI techniques that may facilitate earlier diagnosis of cancer and could be applied to primary care electronic health record (EHR) data. The quality of the evidence, the phase of development the AI techniques have reached, the gaps that exist in the evidence, and the potential for use in primary care were evaluated. METHODS: We searched MEDLINE, Embase, SCOPUS, and Web of Science databases from January 01, 2000, to June 11, 2019, and included all studies providing evidence for the accuracy or effectiveness of applying AI techniques for the early detection of cancer, which may be applicable to primary care EHRs. We included all study designs in all settings and languages. These searches were extended through a scoping review of AI-based commercial technologies. The main outcomes assessed were measures of diagnostic accuracy for cancer. RESULTS: We identified 10,456 studies; 16 studies met the inclusion criteria, representing the data of 3,862,910 patients. A total of 13 studies described the initial development and testing of AI algorithms, and 3 studies described the validation of an AI algorithm in independent data sets. One study was based on prospectively collected data; only 3 studies were based on primary care data. We found no data on implementation barriers or cost-effectiveness. Risk of bias assessment highlighted a wide range of study quality. The additional scoping review of commercial AI technologies identified 21 technologies, only 1 meeting our inclusion criteria. Meta-analysis was not undertaken because of the heterogeneity of AI modalities, data set characteristics, and outcome measures. CONCLUSIONS: AI techniques have been applied to EHR-type data to facilitate early diagnosis of cancer, but their use in primary care settings is still at an early stage of maturity. Further evidence is needed on their performance using primary care data, implementation barriers, and cost-effectiveness before widespread adoption into routine primary care clinical practice can be recommended.

Conceptual Framework to Guide Early Diagnosis Programs for Symptomatic Cancer as Part of Global Cancer Control.

Diagnosing cancer earlier can enable timely treatment and optimize outcomes. Worldwide, national cancer control plans increasingly encompass early diagnosis programs for symptomatic patients, commonly comprising awareness campaigns to encourage prompt help-seeking for possible cancer symptoms and health system policies to support prompt diagnostic assessment and access to treatment. By their nature, early diagnosis programs involve complex public health interventions aiming to address unmet health needs by acting on patient, clinical, and system factors. However, there is uncertainty regarding how to optimize the design and evaluation of such interventions. We propose that decisions about early diagnosis programs should consider four interrelated components: first, the conduct of a needs assessment (based on cancer-site-specific statistics) to identify the cancers that may benefit most from early diagnosis in the target population; second, the consideration of symptom epidemiology to inform prioritization within an intervention; third, the identification of factors influencing prompt help-seeking at individual and system level to support the design and evaluation of interventions; and finally, the evaluation of factors influencing the health systems' capacity to promptly assess patients. This conceptual framework can be used by public health researchers and policy makers to identify the greatest evidence gaps and guide the design and evaluation of local early diagnosis programs as part of broader cancer control strategies.

Identifying Novel Biomarkers Ready for Evaluation in Low-Prevalence Populations for the Early Detection of Upper Gastrointestinal Cancers: A Systematic Review.

INTRODUCTION: Detecting upper gastrointestinal (GI) cancers in primary care is challenging, as cancer symptoms are common, often non-specific, and most patients presenting with these symptoms will not have cancer. Substantial investment has been made to develop biomarkers for cancer detection, but few have reached routine clinical practice. We aimed to identify novel biomarkers for upper GI cancers which have been sufficiently validated to be ready for evaluation in low-prevalence populations. METHODS: We systematically searched MEDLINE, Embase, Emcare, and Web of Science for studies published in English from January 2000 to October 2019 (PROSPERO registration CRD42020165005). Reference lists of included studies were assessed. Studies had to report on second measures of diagnostic performance (beyond discovery phase) for biomarkers (single or in panels) used to detect pancreatic, oesophageal, gastric, and biliary tract cancers. We included all designs and excluded studies with less than 50 cases/controls. Data were extracted on types of biomarkers, populations and outcomes. Heterogeneity prevented pooling of outcomes. RESULTS: We identified 149 eligible studies, involving 22,264 cancer cases and 49,474 controls. A total of 431 biomarkers were identified (183 microRNAs and other RNAs, 79 autoantibodies and other immunological markers, 119 other proteins, 36 metabolic markers, 6 circulating tumour DNA and 8 other). Over half (n = 231) were reported in pancreatic cancer studies. Only 35 biomarkers had been investigated in at least two studies, with reported outcomes for that individual marker for the same tumour type. Apolipoproteins (apoAII-AT and apoAII-ATQ), and pepsinogens (PGI and PGII) were the most promising biomarkers for pancreatic and gastric cancer, respectively. CONCLUSION: Most novel biomarkers for the early detection of upper GI cancers are still at an early stage of matureness. Further evidence is needed on biomarker performance in low-prevalence populations, in addition to implementation and health economic studies, before extensive adoption into clinical practice can be recommended.

Older people's preferences for self-involvement in decision-making if faced with serious illness / As preferências de pessoas idosas pelo autoenvolvimento na tomada de decisão numa situação de doença grave

OBJECTIVES: To examine older people's preferences for self-involvement in end-of-life care decision-making in scenarios of mental capacity (competency) and incapacity, and to identify associated factors. METHODS: A cross-sectional survey was conducted including 400 individuals aged 60+ years living in the city of Belo Horizonte, Brazil. RESULTS: Among 400 respondents, 95.3% preferred self-involvement when capable (due to the high percentage, associated factors were not calculated) and 64.5% preferred self-involvement when incapable through, for example, a living will. Considering that participants could choose multiple answers, the most frequent combinations in the capacity scenario were "yourself" and "other relatives" (76.8%) and "yourself" and "the doctor" (67.8%). In the incapacity scenario, the most frequent combinations were "yourself" and "other relatives" (usually their " children and, less often, their grandchildren) (59.3%) and "yourself" and "the doctor" (48.5%). Three factors were associated with a preference for self-involvement in an incapacity scenario. Those who were married or had a partner (widowed; adjusted odds ratio [AOR] = 0.37; 95% confidence interval [CI] 0.19-0.68) and those who were male (female; AOR = 0.62; 95%CI 0.38-1.00) were less likely to prefer self-involvement. Those who were younger, as in age bands 60-69 years (80+; AOR = 2.35; 95%CI 1.20-4.58) and 70-79 years (80+; AOR = 2.45; 95%CI 1.21-4.94), were more likely to prefer self-involvement. CONCLUSIONS: Most participants preferred self-involvement in both scenarios of capacity and incapacity. Preference for self-involvement was higher in the scenario of capacity, while preference for the involvement of other relatives (usually their children) was greater in the scenario of incapacity.

OBJETIVOS: O objetivo deste estudo foi examinar as preferências de pessoas idosas pelo autoenvolvimento na tomada de decisões nos cuidados de saúde em fim de vida em cenários de capacidade e incapacidade mental (competência), e identificar os fatores associados. METODOLOGIA: Foi realizado um estudo transversal, com 400 indivíduos, com idade 60 anos ou mais, residentes na cidade de Belo Horizonte, Brasil. RESULTADOS: Entre os 400 entrevistados, 95,3% preferiram o autoenvolvimento, quando capazes, na tomada de decisões (devido ao alt percentual, fatores associados não foram caculados); e 64,5% preferiram o autoenvolvimento, quando incapazes de tomar decisões, por meio, por exemplo, de um testamento em vida. Considerando que os participantes puderam escolher mais de uma resposta, as combinações mais frequentes para o cenário de capacidade foram: participantes e outros familiares (76,8%); e participantes e médicos (67,8%). No cenário de incapacidade, as combinações mais frequentes foram: participantes e outros familiares (geralmente filhos e netos) (59,3%); e participantes e médicos (48,5%). Três fatores foram associados à preferência pelo i-r autoenvolvimento em um cenário de incapacidade. Aqueles que eram casados ou com companheiro (viúvo; odds ratio ajustada (AOR) = 0,37; intervalo de confiança (IC) 95% 0,19-0,68) e os homens (mulheres; AOR = 0,62; IC95% 0,38-1,00) foram menos propensos a preferir o autoenvolvimento. Os mais jovens: 60-69 anos (80+; AOR = 2,35; IC95% 1,20-4,58) and 70-79 anos (80+; AOR = 2,45; IC95% 1,214,94) foram mais prováveis de preferir o autoenvolvimento. CONCLUSÕES: A maioria dos participantes preferiu o autoenvolvimento em ambos os cenários de capacidade e incapacidade. A preferência pelo autoenvolvimento foi maior no cenário de capacidade, enquanto a preferência pelo envolvimento de outros familiares (geralmente filhos) foi maior no cenário de incapacidade.

Preferências de pessoas idosas pela informação prognóstica numa situação de doença grave, com menos de um ano de vida / Older people's preferences for prognostic information in a situation of serious illness with less than a year to live

Resumo O objetivo deste estudo foi determinar as preferências de pessoas idosas, residentes na comunidade, pela divulgação de informações relativas ao tempo de vida limitado, sintomas e problemas, e opções disponíveis para cuidados numa situação de doença grave, com menos de um ano de vida; e identificar os fatores associados com a preferência pela informação sobre prognóstico de vida limitado. Foi aplicado a versão brasileira do questionário sobre Preferências e Prioridades para os Cuidados de Fim de Vida (PRISMA), por meio de entrevista face-a-face, a 400 pessoas idosas, residentes na cidade de Belo Horizonte, Minas Gerais, Brasil. Os principais resultados indicam que: 74.0% preferem ser informados sobre o tempo de vida limitado, 89.3% sobre os sintomas e problemas e 96.3% acerca das opções de cuidados. Os fatores associados à preferência pela informação sobre prognóstico de vida limitado foram: gênero (mulheres: OR=0.446, 95% IC:0.269-0.738) e local menos preferido de morte (casa de um familiar ou amigo: OR=2.423, 95% IC:1.130-5.198). Esses resultados mostram que a maioria das pessoas idosas deseja ser informada numa situação de doença avançada, com menos de um ano de vida. Os profissionais de saúde precisam estar preparados para antecipar notícias sobre o prognóstico de vida limitado e a doença.

Abstract This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.

Older people's preferences for prognostic information in a situation of serious illness with less than a year to live. / Preferências de pessoas idosas pela informação prognóstica numa situação de doença grave, com menos de um ano de vida.

This study aimed to determine the preferences of community-dwelling older people about information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available in a situation of serious illness with less than a year to live; and to identify factors associated with a preference for information disclosure regarding poor prognosis. The Brazilian version of the Preferences and Priorities for End of Life Care (PRISMA) questionnaire was administered face-to-face to 400 older people, living in the city of Belo Horizonte, Minas Gerais, Brazil. The main results indicated that 74.0% preferred to be informed that they had limited time left, 89.3% wished to be informed about symptoms and problems, and 96.3% about available care options. The factors associated with preferences for information about poor prognosis were: gender (women: OR = 0.446, 95% CI: 0.269-0.738) and choosing the least preferred place to die (home of a relative or friend: OR = 2.423, 95% CI: 1.130-5.198. These results show that most older people want to be informed in an advanced illness situation with less than a year to live. Health care professionals need to be prepared to anticipate news about poor prognosis and the disease.

O objetivo deste estudo foi determinar as preferências de pessoas idosas, residentes na comunidade, pela divulgação de informações relativas ao tempo de vida limitado, sintomas e problemas, e opções disponíveis para cuidados numa situação de doença grave, com menos de um ano de vida; e identificar os fatores associados com a preferência pela informação sobre prognóstico de vida limitado. Foi aplicado a versão brasileira do questionário sobre Preferências e Prioridades para os Cuidados de Fim de Vida (PRISMA), por meio de entrevista face-a-face, a 400 pessoas idosas, residentes na cidade de Belo Horizonte, Minas Gerais, Brasil. Os principais resultados indicam que: 74.0% preferem ser informados sobre o tempo de vida limitado, 89.3% sobre os sintomas e problemas e 96.3% acerca das opções de cuidados. Os fatores associados à preferência pela informação sobre prognóstico de vida limitado foram: gênero (mulheres: OR=0.446, 95% IC:0.269-0.738) e local menos preferido de morte (casa de um familiar ou amigo: OR=2.423, 95% IC:1.130-5.198). Esses resultados mostram que a maioria das pessoas idosas deseja ser informada numa situação de doença avançada, com menos de um ano de vida. Os profissionais de saúde precisam estar preparados para antecipar notícias sobre o prognóstico de vida limitado e a doença.

Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil.

We examined people's preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting "choosing who makes decisions about your care" as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

Preference for death at home and associated factors among older people in the city of Belo Horizonte, Brazil / Preferência por morrer em casa e fatores associados de pessoas idosas da cidade de Belo Horizonte, Brasil

Abstract We examined people's preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (≥ 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting "choosing who makes decisions about your care" as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.

Resumo Examinamos as preferências das pessoas para o local da morte e identificamos os fatores associados com a preferência pela morte em casa. Perguntamos para uma amostra representativa (N = 400) de pessoas idosas (≥ 60 anos) residentes da cidade de Belo Horizonte, sobre suas preferências pelo local da morte numa situação de doença grave, com menos de um ano de vida. Os dados foram analisados utilizando regressão binomial para identificar os fatores associados. Indicaram a casa como o local preferido de morte, 52,2%. Cinco variáveis foram associadas à preferência por morte em casa: aqueles que vivem com 1 criança (odds ratio(OR)0,41; intervalo de confiança (CI)95%:0,18-0,92; ref: nenhuma criança); ter até 4 anos de escolaridade (OR0,42; CI95%:0,20-0,89; ref: ensino superior); ser difícil viver com o rendimento atual (OR3,18; CI95%:1,53-6,62; ref: vive confortavelmente); avaliar a sua saúde geral como razoável (OR2,07; CI95%:1,06-4,03; ref: saúde muito boa) e selecionar "escolher quem toma decisões sobre os cuidados" como a prioridade de cuidado mais importante (OR2,43; CI95%:1,34-4,40; ref: morrer no local que se quer). A maioria dos entrevistados expressaram preferência por morrer em casa. No entanto, a maioria dos residentes de Belo Horizonte morre nos hospitais, sugerindo que as preferências não estão sendo consideradas.

Development of an evidence-based brief 'talking' intervention for non-responders to bowel screening for use in primary care: stakeholder interviews.

BACKGROUND: Bowel cancer is the third most common cause of cancer death worldwide. Bowel screening has been shown to reduce mortality and primary care interventions have been successful in increasing uptake of screening. Using evidence-based theory to inform the development of such interventions has been shown to increase their effectiveness. This study aimed to develop and refine a brief evidence-based intervention for eligible individuals whom have not responded to their last bowel screening invitation (non-responders), for opportunistic use by primary care providers during routine consultations. METHODS: The development of a brief intervention involving a conversation between primary care providers and non-responders was informed by a multi-faceted model comprising: research team workshop and meetings to draw on expertise; evidence from the literature regarding barriers to bowel screening and effective strategies to promote informed participation; relevant psychological theory, and intervention development and behaviour change guidance. Qualitative telephone interviews with 1) bowel screening stakeholders and 2) patient non-responders explored views regarding the acceptability of the intervention to help refine its content and process. RESULTS: The intervention provides a theory and evidence-based tool designed to be incorporated within current primary care practice. Bowel screening stakeholders were supportive of the intervention and recognised the importance of the role of primary care. Interviews highlighted the importance of brevity and simplicity to incorporate the intervention into routine clinical care. Non-responders similarly found the intervention acceptable, valuing a holistic approach to their care. Moreover, they expected their primary care provider to encourage participation. CONCLUSIONS: A theory-based brief conversation for use in a primary care consultation was acceptable to bowel screening stakeholders and potential recipients, reflecting a health promoting primary care ethos. Findings indicate that it is appropriate to test the intervention in primary care in a feasibility study.

Is an opportunistic primary care-based intervention for non-responders to bowel screening feasible and acceptable? A mixed-methods feasibility study in Scotland.

OBJECTIVES: We aimed to test whether a brief, opportunistic intervention in general practice was a feasible and acceptable way to engage with bowel screening non-responders. DESIGN: This was a feasibility study testing an intervention which comprised a brief conversation during routine consultation, provision of a patient leaflet and instructions to request a replacement faecal occult blood test kit. A mixed-methods approach to evaluation was adopted. Data were collected from proformas completed after each intervention, from the Bowel Screening Centre database and from questionnaires. Semi-structured interviews were carried out. We used descriptive statistics, content and framework analysis to determine intervention feasibility and acceptability. PARTICIPANTS: Bowel screening non-responders (as defined by the Scottish Bowel Screening Centre) and primary care professionals working in five general practices in Lothian, Scotland. PRIMARY AND SECONDARY OUTCOME MEASURES: Several predefined feasibility parameters were assessed, including numbers of patients engaging in conversation, requesting a replacement kit and returning it, and willingness of primary care professionals to deliver the intervention. RESULTS: The intervention was offered to 258 patients in five general practices: 220 (87.0%) engaged with the intervention, 60 (23.3%) requested a new kit, 22 (8.5%) kits were completed and returned. Interviews and questionnaires suggest that the intervention was feasible, acceptable and consistent with an existing health prevention agenda. Reported challenges referred to work-related pressures, time constraints and practice priorities. CONCLUSIONS: This intervention was acceptable and resulted in a modest increase in non-responders participating in bowel screening, although outlined challenges may affect sustained implementation. The strategy is also aligned with the increasing role of primary care in promoting bowel screening.

The characteristics of national health initiatives promoting earlier cancer diagnosis among adult populations: a systematic review protocol.

INTRODUCTION: The increasing burden of cancer morbidity and mortality has led to the development of national health initiatives to promote earlier cancer diagnosis and improve cancer survival. This protocol describes a systematic review aiming to identify the evidence about such initiatives among the adult population. We will describe their components, stakeholders and target populations, and summarise their outcomes. METHODS AND ANALYSIS: We will search databases and websites for peer-reviewed publications and grey literature on national health initiatives in high-income countries as defined by the World Bank. Quantitative, qualitative and mixed-methods studies will be included and assessed for their methodological quality. Study selection, quality assessment and data extraction will be carried out independently by two reviewers. Narrative synthesis will be used to analyse the findings. ETHICS AND DISSEMINATION: This systematic review analyses secondary data and ethical approval is not required. Review findings will be helpful to researchers, policy makers, governments and other key stakeholders developing similar initiatives and assessing cancer outcomes. The results will be submitted to a peer-reviewed journal in order to reach a diverse group of healthcare professionals, researchers and policy makers. This systematic review protocol is registered at PROSPERO (CRD42016047233).

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers

BACKGROUND: Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. OBJECTIVES: 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. METHODS: Search methods: We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. Selection criteria: We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. Data collection and analysis: One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). MAIN RESULTS: We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. AUTHORS' CONCLUSIONS: The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.

Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care.

BACKGROUND: Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey. METHODS: Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4-10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants. FINDINGS: The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52-8.00, ref: 20-49yrs) and female informants (AOR 1.70, 95%CI: 1.33-2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46-0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32-0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920). CONCLUSIONS: Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.

Home care by general practitioners for cancer patients in the last 3 months of life: An epidemiological study of quality and associated factors.

BACKGROUND: Stronger generalist end-of-life care at home for people with cancer is called for but the quality of end-of-life care delivered by general practitioners has been questioned. AIM: To determine the degree of and factors associated with bereaved relatives' satisfaction with home end-of-life care delivered by general practitioners to cancer patients. DESIGN: Population-based mortality followback survey. SETTING/PARTICIPANTS: Bereaved relatives of people who died of cancer in London, United Kingdom (identified from death registrations in 2009-2010), were invited to complete a postal questionnaire surveying the deceased's final 3 months of life. RESULTS: Questionnaires were completed for 596 decedents of whom 548 spent at least 1 day at home in the last 3 months of life. Of the respondents, 55% (95% confidence interval: 51%-59%) reported excellent/very good home care by general practitioners, compared with 78% (95% confidence interval: 74%-82%) for specialist palliative care providers and 68% (95% confidence interval: 64%-73%) for district/community/private nurses. The odds of high satisfaction (excellent/very good) with end-of-life care by general practitioners doubled if general practitioners made three or more compared with one or no home visits in the patient's last 3 months of life (adjusted odds ratio: 2.54 (95% confidence interval: 1.52-4.24)) and halved if the patient died at hospital rather than at home (adjusted odds ratio: 0.55 (95% confidence interval: 0.31-0.998)). CONCLUSION: There is considerable room for improvement in the satisfaction with home care provided by general practitioners to terminally ill cancer patients. Ensuring an adequate offer of home visits by general practitioners may help to achieve this goal.