Study protocol for a pragmatic randomised controlled trial of comparing enhanced acceptance and commitment therapy plus (+) added to usual aftercare versus usual aftercare only, in patients living with or beyond cancer: SUrvivors' Rehabilitation Evaluation after CANcer (SURECAN) trial.

BACKGROUND: Two million people in the UK are living with or beyond cancer and a third of them report poor quality of life (QoL) due to problems such as fatigue, fear of cancer recurrence, and concerns about returning to work. We aimed to develop and evaluate an intervention based on acceptance and commitment therapy (ACT), suited to address the concerns of cancer survivors and in improving their QoL. We also recognise the importance of exercise and vocational activity on QoL and therefore will integrate options for physical activity and return to work/vocational support, thus ACT Plus (+). METHODS: We will conduct a multi-centre, pragmatic, theory driven, randomised controlled trial. We will assess whether ACT+ including usual aftercare (intervention) is more effective and cost-effective than usual aftercare alone (control). The primary outcome is QoL of participants living with or beyond cancer measured using the Functional Assessment of Cancer Therapy: General scale (FACT-G) at 52 weeks. We will recruit 344 participants identified from secondary care sites who have completed hospital-based treatment for cancer with curative intent, with low QoL (determined by the FACT-G) and randomise with an allocation ratio of 1:1 to the intervention or control. The intervention (ACT+) will be delivered by NHS Talking Therapies, specialist services, and cancer charities. The intervention consists of up to eight sessions at weekly or fortnightly intervals using different modalities of delivery to suit individual needs, i.e. face-to-face sessions, over the phone or skype. DISCUSSION: To date, there have been no robust trials reporting both clinical and cost-effectiveness of an ACT based intervention for people with low QoL after curative cancer treatment in the UK. We will provide high quality evidence of the effectiveness and cost-effectiveness of adding ACT+ to usual aftercare provided by the NHS. If shown to be effective and cost-effective then commissioners, providers and cancer charities will know how to improve QoL in cancer survivors and their families. TRIAL REGISTRATION: ISRCTN: ISRCTN67900293 . Registered on 09 December 2019. All items from the World Health Organization Trial Registration Data Set for this protocol can be found in Additional file 2 Table S1.

A meta-ethnography investigating relational influences on mental health and cancer-related health care interventions for racially minoritised people in the UK.

OBJECTIVE: Despite calls to increase the 'cultural competence' of health care providers, racially minoritised people continue to experience a range of problems when it comes to health care, including discrimination. While relevant qualitative meta-syntheses have suggested better ways forward for health care for racialised minorities, many have lacked conceptual depth, and none have specifically investigated the relational dimensions involved in care. We set out to investigate the social and cultural influences on health care interventions, focusing on psychological approaches and/or cancer care to inform the trial of a new psychological therapy for those living with or beyond cancer. METHOD: A meta-ethnography approach was used to examine the relevant qualitative studies, following Noblit and Hare, and guided by patient involvement throughout. Papers were analysed between September 2018 and February 2023, with some interruptions caused by the Covid pandemic. The following databases were searched: Ovid MEDLINE, EBSCO CINAHL, Ovid Embase, EBSCO PsycINFO, Proquest Sociology Collection (including Applied Social Sciences Index & Abstracts (ASSIA), Sociological Abstracts and Sociology Database), EBSCO SocINDEX, Ovid AMED, and Web of Science. The systematic review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42018107695), and reporting follows the eMERGe Reporting Guidance for meta-ethnographies (France et al. 2019). RESULTS: Twenty-nine journal papers were included in the final review. Themes (third-order constructs) developed in the paper include the centrality of the patient-practitioner relationship; how participants give meaning to their illness in connection to others; how families (rather than individuals) may make health decisions; how links with a higher power and spiritual/religious others can play a role in coping; and the ways in which a hierarchy of help-seeking develops, frequently with the first port of call being the resources of oneself. Participants in studies had a need to avoid being 'othered' in their care, valuing practitioners that connected with them, and who were able to recognise them as whole and complex (sometimes described in relational languages like 'love'). Complex family-based health decision-making and/or the importance of relations with non-human interactants (e.g. God, spiritual beings) were frequently uncovered, not to mention the profoundly emergent nature of stigma, whereby families could be relatively safe havens for containing and dealing with health challenges. A conceptual framework of 'animated via (frequently hidden) affective relationality' emerged in the final synthesis, bringing all themes together, and drawing attention to the emergent nature of the salient issues facing minoritised patients in health care interactions. CONCLUSION: Our analysis is important because it sheds light on the hitherto buried relational forces animating and producing the specific issues facing racially minoritised patients, which study participants thought were largely overlooked, but to which professionals can readily relate (given the universal nature of human relations). Thus, training around the affective relationality of consultations could be a fruitful avenue to explore to improve care of diverse patients.

The use of culturally adapted and translated depression screening questionnaires with South Asian haemodialysis patients in England.

BACKGROUND: Depression is common amongst patients receiving haemodialysis (HD). Assessment and intervention when faced with language and cultural barriers is challenging. To support clinician decisions, we conducted a cross-sectional study to assess the use of culturally adapted and translated versions of commonly-used depression screening questionnaires with South Asian patients receiving HD in England. METHODS: Patients completed adapted versions of the Patient Health Questionnaire (PHQ-9), the Centre for Epidemiological Studies Depression Scale Revised (CESD-R), and the Beck Depression Inventory II (BDI-II). All questionnaires were available in Gujarati, Punjabi, Urdu, and Bengali. A comparative sample of white-Europeans completed the questionnaires in English. The research was based across 9 National Health Service (NHS) Trusts in England. Structural validity of translated questionnaires was assessed using confirmatory factor analysis. Diagnostic accuracy was explored in a subgroup of South Asians against ICD-10 categories using the Clinical Interview Schedule Revised (CIS-R) with receiver operating curve (ROC) analysis. RESULTS: 229 South Asian and 120 white-European HD patients participated. A single latent depression factor largely accounted for the correlations between items of the PHQ-9, CESD-R and BDI-II. Issues with measurement equivalence implied that scores on the translations may not be comparable with the English language versions. Against CIS-R based ICD-10 diagnosis of depression, sensitivity was modest across scales (50-66.7%). Specificity was higher (81.3-93.8%). Alternative screening cut-offs did not improve positive predictive values. CONCLUSIONS: Culturally adapted translations of depression screening questionnaires are useful to explore symptom endorsement amongst South Asian patients. However, data indicate that standard cut-off scores may not be appropriate to classify symptom severity. Use of the CIS-R algorithms for optimal case identification requires further exploration in this setting. Strategies to encourage recruitment of under-represented groups in renal research are also warranted, especially for in-depth discussions related to psychological care needs.

A systematic review and meta-analysis of the evidence on inflammation in depressive illness and symptoms in chronic and end-stage kidney disease.

BACKGROUND: Depression affects approximately 27% of adults with chronic kidney disease (CKD) and end-stage kidney failure (ESKF). Depression in this population is associated with impaired quality of life and increased mortality. The extent of inflammation and the impact on depression in CKD/ESKF is yet to be established. Through a systematic literature review and meta-analysis, we aim to understand the relationship between depression and inflammation in CKD/ESKF patients. METHODS: We searched nine electronic databases for published studies until January 2022. Titles and abstracts were screened against inclusion and exclusion criteria. Data extraction and study quality assessment was carried out independently by two reviewers. A meta-analysis was carried out where appropriate; otherwise a narrative review of studies was completed. RESULTS: Sixty studies met our inclusion criteria and entered the review (9481 patients included in meta-analysis). Meta-analysis of cross-sectional associations revealed significantly higher levels of pro-inflammatory biomarkers; C-reactive protein; Interleukin 6 (IL-6) and tumour necrosis factor-alpha in patients with depressive symptoms (DS) compared to patients without DS. Significantly lower levels of anti-inflammatory cytokine IL-10 were found in patients with DS compared to patients without DS. Considerable heterogeneity was detected in the analysis for most inflammatory markers. CONCLUSION: We found evidence for an association of higher levels of pro-inflammatory and lower anti-inflammatory cytokines and DS in patients with CKD/ESKF. Clinical trials are needed to investigate whether anti-inflammatory therapies will be effective in the prevention and treatment of DS in these patients with multiple comorbidities.

A syndemic of psychiatric morbidity, substance misuse, violence, and poor physical health among young Scottish men with reduced life expectancy.

BACKGROUND: Scotland has the shortest life expectancy in Western Europe, driven by high rates of cancer, suicides, alcohol-related causes and drug-related poisonings. These disparities cannot be explained solely by socioeconomic deprivation. Our aim was to investigate whether a syndemic in a socioeconomically deprived area of Glasgow might account for premature mortality among men. METHODS: We analysed data from two cross-sectional population surveys: a national sample of 1916 British men and another of 765 men in Glasgow East. The survey included men aged 18-34, and was undertaken in 2011 to study correlates of violence. Questionnaires covered current physical health, psychiatric symptoms, substance misuse, and crime and violence. Syndemic components were identified using confirmatory factor analysis. Associations and synergistic interactions between these variables and health status were estimated using logistic regression. RESULTS: An aggregation of multiple health conditions and health-related behaviours was found in Glasgow East. A syndemic model of joint effects, adducing a four-component latent variable (violence, substance dependence, psychiatric morbidity and a diathesis of biological/behavioural risk) showed synergy between components and explained persistent disparities in poor physical health/chronic health conditions. Effect modification was found between the general syndemic factor and contextual variables at individual and social environmental level according to location. CONCLUSIONS: Syndemic effects from synergistic interactions were confirmed between psychiatric morbidity, substance misuse, violence, and biological/behavioural risk for physical health. A hypothetical model was developed to explain how the syndemic leads to potentially life-threatening risks to young men, both currently and as precursors of physical health conditions which may shorten their lives in the future.

Post-traumatic stress in head and neck cancer survivors and their partners.

PURPOSE: Head and neck cancer (HNC) diagnosis and treatment are distressing and have immediate detrimental impacts on functioning and quality of life (QoL). Nevertheless, little is known about long-term psychosocial effects. The aim of this study was to determine the prevalence and correlates of clinical post-traumatic stress disorder (PTSD) and subclinical post-traumatic stress symptoms (PTSS) in HNC patients surviving more than 2 years since treatment and in their partners. METHODS: HNC survivors identified from the cancer registry of a London hospital and their partners completed measures of PTSS, depression and anxiety, fear of cancer recurrence, social support, appearance concerns and health-related QoL. Data regarding their clinical and demographic characteristics were also collected. Correlations, as well as linear and logistic regression coefficients, were calculated to estimate associations with PTSS scores. RESULTS: In this analysis of 93 HNC survivors, at a mean of 6 years (SD = 4) after treatment, 33.4% reported PTSS and 11.8% met the criteria for post-traumatic stress disorder (PTSD). Fear of cancer recurrence was independently associated with PTSS (p < .01). In subgroup analyses of patient-partner dyads, 15.4% of patients and 12.8% of partners reported PTSD, with a further 33.3% of patients and 25.7% of partners demonstrating PTSS. Patients' and partners' scores did not differ significantly (p > .05). CONCLUSIONS: This is the first examination of post-traumatic stress in survivors of HNC and shows that high levels of cancer-related PTSS exist for many years after diagnosis in both patients and their partners.

Are facial injuries really different? An observational cohort study comparing appearance concern and psychological distress in facial trauma and non-facial trauma patients.

Facial injuries are widely assumed to lead to stigma and significant psychosocial burden. Experimental studies of face perception support this idea, but there is very little empirical evidence to guide treatment. This study sought to address the gap. Data were collected from 193 patients admitted to hospital following facial or other trauma. Ninety (90) participants were successfully followed up 8 months later. Participants completed measures of appearance concern and psychological distress (post-traumatic stress symptoms (PTSS), depressive symptoms, anxiety symptoms). Participants were classified by site of injury (facial or non-facial injury). The overall levels of appearance concern were comparable to those of the general population, and there was no evidence of more appearance concern among people with facial injuries. Women and younger people were significantly more likely to experience appearance concern at baseline. Baseline and 8-month psychological distress, although common in the sample, did not differ according to the site of injury. Changes in appearance concern were, however, strongly associated with psychological distress at follow-up. We conclude that although appearance concern is severe among some people with facial injury, it is not especially different to those with non-facial injuries or the general public; changes in appearance concern, however, appear to correlate with psychological distress. We therefore suggest that interventions might focus on those with heightened appearance concern and should target cognitive bias and psychological distress.

Review of systematic reviews of non-pharmacological interventions to improve quality of life in cancer survivors.

OBJECTIVES: Over two million people in the UK are living with and beyond cancer. A third report diminished quality of life. DESIGN: A review of published systematic reviews to identify effective non-pharmacological interventions to improve the quality of life of cancer survivors. DATA SOURCES: Databases searched until May 2017 included PubMed, Cochrane Central, EMBASE, MEDLINE, Web of Science, the Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. STUDY SELECTION: Published systematic reviews of randomised trials of non-pharmacological interventions for people living with and beyond cancer were included; included reviews targeted patients aged over 18. All participants had already received a cancer diagnosis. Interventions located in any healthcare setting, home or online were included. Reviews of alternative therapies or those non-English reports were excluded. Two researchers independently assessed titles, abstracts and the full text of papers, and independently extracted the data. OUTCOMES: The primary outcome of interest was any measure of global (overall) quality of life. ANALYTICAL METHODS: Quality assessment assessing methdological quality of systematic reviews (AMSTAR) and narrative synthesis, evaluating effectiveness of non-pharmacological interventions and their components. RESULTS: Of 14 430 unique titles, 21 were included in the review of reviews. There was little overlap in the primary papers across these reviews. Thirteen reviews covered mixed tumour groups, seven focused on breast cancer and one focused on prostate cancer. Face-to-face interventions were often combined with online, telephone and paper-based reading materials. Interventions included physical, psychological or behavioural, multidimensional rehabilitation and online approaches. Yoga specifically, physical exercise more generally, cognitive behavioural therapy (CBT) and mindfulness-based stress reduction (MBSR) programmes showed benefit in terms of quality of life. CONCLUSIONS: Exercise-based interventions were effective in the short (less than 3-8 months) and long term. CBT and MBSR also showed benefits, especially in the short term. The evidence for multidisciplinary, online and educational interventions was equivocal.

Violent injury predicts poor psychological outcomes after traumatic injury in a hard-to-reach population: an observational cohort study.

BACKGROUND: People who experience physical trauma face a range of psychosocial outcomes. These may be overlooked by busy clinicians. While some risk factors are understood, understanding of the psychological effects of violent injury remains limited, particularly in UK settings. This study compared psychological outcomes following interpersonal violence and accidental injury, including the persistence of psychological distress. METHODS: A questionnaire survey was carried out at two time points of patients admitted to a large teaching hospital in London between July 2012 and April 2014. Participants were consecutive adult patients admitted to the Royal London Hospital with traumatic injuries, with 219 participants at baseline. Follow-up survey was 8 months later (n=109). Standardised measures assessed post-traumatic stress symptoms (PTSS) (Acute Stress Disorder Scale and PTSD Checklist) and depressive symptoms (Hospital Anxiety and Depression Scale). RESULTS: PTSS and depressive symptoms affected 27% and 33%, respectively, at baseline. At 8 months, 27% and 31% reported these symptoms for PTSS and depressive symptoms, respectively. The repeated measures were assessed with multilevel models: after adjusting for demographic factors, patients with violent injury showed more PTSS (OR 6.27, 95% CI 1.90 to 20.66) and depressive symptoms (OR 3.12, 95% CI 1.08 to 8.99). CONCLUSIONS: There were high levels of psychological distress among traumatic injury patients. Violent injuries were associated with an increased risk of both post-traumatic and depressive symptoms. People vulnerable to distress would benefit from psychological support, and hospital admission provides a unique opportunity to engage hard-to-reach groups in interventions.

Chronic fatigue syndrome: comparing outcomes in White British and Black and minority ethnic patients after cognitive-behavioural therapy.

BACKGROUND: Cognitive-behavioural therapy (CBT) is one of the most promising treatments for chronic fatigue syndrome (CFS). It is unclear whether CBT is effective for Black and minority ethnic (BME) groups. AIMS: To assess the effectiveness of CBT in BME patients compared with White British patients presenting to a specialist CFS service. METHOD: Data from 67 (19.0%) BME participants and 285 (81.0%) White British participants referred to a specialist CFS service in the UK were collected at baseline and after CBT treatment. RESULTS: Pairwise comparisons revealed that both BME participants and White British participants significantly improved on measures of fatigue severity (P<0.001), physical functioning (P<0.001) and work/social adjustment (P<0.001). Independent samples t-tests showed that BME participants improved despite exhibiting significantly higher baseline damage beliefs (P = 0.009), catastrophising (P = 0.024), all-or-nothing behaviour (P = 0.036) and avoidance/resting behaviour (P = 0.001), compared with White British participants. CONCLUSIONS: To our knowledge, this study is the first to indicate that CBT is effective for treating CFS in a group of patients from diverse BME backgrounds.

Changes in health in England, with analysis by English regions and areas of deprivation, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013.

BACKGROUND: In the Global Burden of Disease Study 2013 (GBD 2013), knowledge about health and its determinants has been integrated into a comparable framework to inform health policy. Outputs of this analysis are relevant to current policy questions in England and elsewhere, particularly on health inequalities. We use GBD 2013 data on mortality and causes of death, and disease and injury incidence and prevalence to analyse the burden of disease and injury in England as a whole, in English regions, and within each English region by deprivation quintile. We also assess disease and injury burden in England attributable to potentially preventable risk factors. England and the English regions are compared with the remaining constituent countries of the UK and with comparable countries in the European Union (EU) and beyond. METHODS: We extracted data from the GBD 2013 to compare mortality, causes of death, years of life lost (YLLs), years lived with a disability (YLDs), and disability-adjusted life-years (DALYs) in England, the UK, and 18 other countries (the first 15 EU members [apart from the UK] and Australia, Canada, Norway, and the USA [EU15+]). We extended elements of the analysis to English regions, and subregional areas defined by deprivation quintile (deprivation areas). We used data split by the nine English regions (corresponding to the European boundaries of the Nomenclature for Territorial Statistics level 1 [NUTS 1] regions), and by quintile groups within each English region according to deprivation, thereby making 45 regional deprivation areas. Deprivation quintiles were defined by area of residence ranked at national level by Index of Multiple Deprivation score, 2010. Burden due to various risk factors is described for England using new GBD methodology to estimate independent and overlapping attributable risk for five tiers of behavioural, metabolic, and environmental risk factors. We present results for 306 causes and 2337 sequelae, and 79 risks or risk clusters. FINDINGS: Between 1990 and 2013, life expectancy from birth in England increased by 5·4 years (95% uncertainty interval 5·0-5·8) from 75·9 years (75·9-76·0) to 81·3 years (80·9-81·7); gains were greater for men than for women. Rates of age-standardised YLLs reduced by 41·1% (38·3-43·6), whereas DALYs were reduced by 23·8% (20·9-27·1), and YLDs by 1·4% (0·1-2·8). For these measures, England ranked better than the UK and the EU15+ means. Between 1990 and 2013, the range in life expectancy among 45 regional deprivation areas remained 8·2 years for men and decreased from 7·2 years in 1990 to 6·9 years in 2013 for women. In 2013, the leading cause of YLLs was ischaemic heart disease, and the leading cause of DALYs was low back and neck pain. Known risk factors accounted for 39·6% (37·7-41·7) of DALYs; leading behavioural risk factors were suboptimal diet (10·8% [9·1-12·7]) and tobacco (10·7% [9·4-12·0]). INTERPRETATION: Health in England is improving although substantial opportunities exist for further reductions in the burden of preventable disease. The gap in mortality rates between men and women has reduced, but marked health inequalities between the least deprived and most deprived areas remain. Declines in mortality have not been matched by similar declines in morbidity, resulting in people living longer with diseases. Health policies must therefore address the causes of ill health as well as those of premature mortality. Systematic action locally and nationally is needed to reduce risk exposures, support healthy behaviours, alleviate the severity of chronic disabling disorders, and mitigate the effects of socioeconomic deprivation. FUNDING: Bill & Melinda Gates Foundation and Public Health England.

Informing the design of a national screening and treatment programme for chronic viral hepatitis in primary care: qualitative study of at-risk immigrant communities and healthcare professionals.

BACKGROUND: Effective strategies are needed to provide screening and treatment for hepatitis B and C to immigrant groups in the UK at high risk of chronic infection. This study aimed to build an understanding of the knowledge, beliefs and attitudes towards these conditions and their management in a range of high-risk minority ethnic communities and health professionals, in order to inform the design of a screening and treatment programme in primary care. METHODS: Qualitative data collection consisted of three sequential phases- (i) semi-structured interviews with key informants (n = 17), (ii) focus groups with people from Chinese, Pakistani, Roma, Somali, and French- and English-speaking African communities (n = 95), and (iii) semi-structured interviews with general practitioners (n = 6). Datasets from each phase were analysed using the Framework method. RESULTS: Key informants and general practitioners perceived that there was limited knowledge and understanding about hepatitis B and C within high-risk immigrant communities, and that chronic viral hepatitis did not typically feature in community discourses about serious illness. Many focus group participants were confused about the differences between types of viral hepatitis, held misconceptions regarding transmission, and were unaware of the asymptomatic nature of chronic infection. Most welcomed the idea of a screening programme, but key informants and focus group participants also identified numerous practical barriers to engagement with primary care-based screening and treatment; including language and communication difficulties, limited time (due to long working hours), and (for some) low levels of trust and confidence in general practice-based care. General practitioners expressed concerns about the workload implications and sustainability of screening and treating immigrant patients for chronic viral hepatitis in primary care. CONCLUSIONS: Strategies to reduce the burden of chronic viral hepatitis in immigrant communities will need to consider how levels of understanding about hepatitis B and C within these communities, and barriers to accessing healthcare, may affect capacity to engage with screening and treatment. Services may need to work with community groups and language support services to provide information and wider encouragement for screening. Primary care services will need ongoing consultation regarding their support needs to deliver hepatitis screening and treatment programmes.

Quality of life, psychological wellbeing and treatment needs of trauma and head and neck cancer patients.

There is increasing evidence that patients treated for trauma or cancer of the head and neck may go on to experience psychological distress. We aimed to measure the impact of this on their quality of life (QoL) and to explore their willingness to be referred for psychological support. A total of 96 patients with facial injuries and 124 with cancer of the head and neck completed a self-reported questionnaire to identify psychological distress (Hospital Anxiety and Depression Scale (HADS) and the Acute Stress Disorder (ASD) Scale), quality of life (WHOQoL-BREF), satisfaction with treatment, and willingness to accept psychological support. Thirty-nine percent of patients showed high levels of depressive symptoms and 43% reported high levels of anxiety; 43% in the trauma group and 12% in the cancer group had high ASD scores. Patients with high scores on the HADS reported poorer QoL, and 40% of those with high levels of psychological distress were willing to consider psychological support. Despite the fact that patients report high levels of satisfaction with their medical and surgical care, many have psychological problems and have needs that are not being met. A large proportion would use psychological support services.

The Olympic Regeneration in East London (ORiEL) study: protocol for a prospective controlled quasi-experiment to evaluate the impact of urban regeneration on young people and their families.

INTRODUCTION: Recent systematic reviews suggest that there is a dearth of evidence on the effectiveness of large-scale urban regeneration programmes in improving health and well-being and alleviating health inequalities. The development of the Olympic Park in Stratford for the London 2012 Olympic and Paralympic Games provides the opportunity to take advantage of a natural experiment to examine the impact of large-scale urban regeneration on the health and well-being of young people and their families. DESIGN AND METHODS: A prospective school-based survey of adolescents (11-12 years) with parent data collected through face-to-face interviews at home. Adolescents will be recruited from six randomly selected schools in an area receiving large-scale urban regeneration (London Borough of Newham) and compared with adolescents in 18 schools in three comparison areas with no equivalent regeneration (London Boroughs of Tower Hamlets, Hackney and Barking & Dagenham). Baseline data will be completed prior to the start of the London Olympics (July 2012) with follow-up at 6 and 18 months postintervention. Primary outcomes are: pre-post change in adolescent and parent mental health and well-being, physical activity and parental employment status. Secondary outcomes include: pre-post change in social cohesion, smoking, alcohol use, diet and body mass index. The study will account for individual and environmental contextual effects in evaluating changes to identified outcomes. A nested longitudinal qualitative study will explore families' experiences of regeneration in order to unpack the process by which regeneration impacts on health and well-being. ETHICS AND DISSEMINATION: The study has approval from Queen Mary University of London Ethics Committee (QMREC2011/40), the Association of Directors of Children's Services (RGE110927) and the London Boroughs Research Governance Framework (CERGF113). Fieldworkers have had advanced Criminal Records Bureau clearance. Findings will be disseminated through peer-reviewed publications, national and international conferences, through participating schools and the study website (http://www.orielproject.co.uk).

African and Black Caribbean origin cancer survivors: a qualitative study of the narratives of causes, coping and care experiences.

OBJECTIVES: Although there is evidence in the U.S.A. and U.K. to suggest that ethnic minority groups have an inferior experience of cancer care, few studies investigate ethnic disparities in satisfaction and care experiences among survivors. Patients' illness perceptions (lay explanations for illness) and coping styles (emotional and behavioural) are influenced by ethnicity-related cultural beliefs and expectations. Depressive illness or fears of recurrence of cancer may also lead to poorer recovery and function. This paper investigates whether ethnic influences explain different coping behaviours, care experiences and help-seeking behaviours. DESIGN: Eight participants of African or Black Caribbean origin were recruited from a London support group for a series of qualitative in-depth interviews. The interviews were recorded and transcribed, and the transcripts analysed using a framework method of qualitative data analysis. The emergent themes were tested and documented to reflect the issues of importance to patients. RESULTS: Lay explanations of causes of cancer were complex and diverse reflecting cultural influences and the impact of contact with health professionals. Generally, positive views about cancer care were found, especially at the secondary care level. Primary care attracted mixed views. In contrast to American studies, no acknowledgement of discrimination on the basis of ethnicity was reported. The need to be resilient and think positively were widely acknowledged as coping strategies. Some coped by avoiding contemplation of their condition or diagnosis. Religious beliefs and practices provided coping mechanisms for some, and a means to improve confidence and avoid distressing contemplation about their condition. Family, friends and charitable groups also provided emotional and practical support. CONCLUSIONS: Subjects were generally satisfied with their care; different coping styles included positive attitudes, minimisation of difficulties or more realistic consideration of the impact of cancer.

Early sexual risk among black and minority ethnicity teenagers: a mixed methods study.

PURPOSE: To determine how ethnic background influences early sexual activity among young adults. METHODS: Quantitative data were collected during the Research with East London Adolescents Community Health Survey study, a population-based survey of young adults belonging to white and black and minority ethnic groups and residing in east London in 2001 (n = 2,689) and 2003 (n = 2,675). Qualitative data were obtained from 146 young adults between January and September 2003. RESULTS: Black Caribbean, black African, white other, and mixed ethnicity young men were most likely to report high-risk sexual behaviors, that is, sexual debut at the age of ≤13 years, having unprotected sex, and having multiple sexual partners. There were marked variations within groups commonly collapsed as "black" or as "Muslim." Black Caribbean and black African young adults reported high rates of protective behaviors in addition to risk behaviors. Qualitative data confirmed variations in sexual behavior within ethnic groups. Longitudinally, risk of engaging in two or more high-risk sexual behaviors was predicted by low family support (OR: 2.8, 95% CI: 1.6-4.9), regular smoking (OR: 4.5, 95% CI: 1.7-12.0), and usage of illicit drugs (OR: 2.9, 95% CI: 1.5-5.8), with lower risk predicted by low peer support (OR: .3, 95% CI: .2-.6). CONCLUSIONS: Young adults belonging to black and minority ethnic groups reported a wide variation in sexual risk behaviors. High levels of high-risk behaviors were reported in ethnic groups known to have high rates of sexually transmitted infections. Effective sexual health interventions should be started early and they must focus on sexual debut and partner choices as well as messages regarding safe sex.

Chronic fatigue syndrome in an ethnically diverse population: the influence of psychosocial adversity and physical inactivity.

BACKGROUND: Chronic fatigue syndrome (CFS) is a complex multifactorial disorder. This paper reports the prevalence of chronic fatigue (CF) and CFS in an ethnically diverse population sample and tests whether prevalence varies by social adversity, social support, physical inactivity, anxiety and depression. METHODS: Analysis of survey data linking the Health Survey for England (1998 and 1999) and the Ethnic Minority Psychiatric Illness Rates in the Community (EMPIRIC) study undertaken in 2000. The study population comprised a national population sample of 4,281 people ages 16 to 74 years. CF and CFS were operationally defined on the basis of an interview in the EMPIRIC study, alongside questions about psychosocial risk factors. Previous illnesses were reported in the Health Survey for England during 1998 and 1999, as was physical inactivity. RESULTS: All ethnic minority groups had a higher prevalence of CFS than the White group. The lowest prevalence was 0.8% in the White group, and it was highest at 3.5% in the Pakistani group (odds ratio (OR), 4.1; 95% confidence interval (95% CI), 1.6 to 10.4). Anxiety (OR, 1.8; 95% CI, 1.4 to 2.2), depression (OR, 1.4; 95% CI, 1.1 to 1.8), physical inactivity (OR, 2.0; 95% CI, 1.1 to 3.8), social strain (OR, 1.24; 95% CI, 1.04 to 1.48) and negative aspects of social support (OR, 2.12; 95% CI, 1.4 to 3.3) were independent risk factors for CFS in the overall sample. Together these risk factors explained ethnic differences in the prevalence of CFS, but no single risk factor could explain a higher prevalence in all ethnic groups. CONCLUSIONS: The prevalence of CFS, but not CF, varies by ethnic group. Anxiety, depression, physical inactivity, social strain and negative aspects of social support together accounted for prevalence differences of CFS in the overall sample.

A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, co-morbidity and coping.

BACKGROUND: Chronic Fatigue Syndrome (CFS) is characterized by unexplained fatigue that lasts for at least 6 months alongside a constellation of other symptoms. CFS was historically thought to be most common among White women of higher socio-economic status. However, some recent studies in the USA suggest that the prevalence is actually higher in some minority ethnic groups. If there are convincing differences in prevalence and risk factors across all or some ethnic groups, investigating the causes of these can help unravel the pathophysiology of CFS. METHODS: A systematic review was conducted to explore the relationship between fatigue, chronic fatigue (CF--fatigue lasting for 6 months), CFS and ethnicity. Studies were population-based and health service-based. Meta-analysis was also conducted to examine the population prevalence of CF and CFS across ethnic groups. RESULTS: Meta-analysis showed that compared with the White American majority, African Americans and Native Americans have a higher risk of CFS [Odds Ratio (OR) 2.95, 95% confidence interval (CI): 0.69-10.4; OR = 11.5, CI: 1.1-56.4, respectively] and CF (OR = 1.56, CI: 1.03-2.24; OR = 3.28, CI: 1.63-5.88, respectively). Minority ethnic groups with CF and CFS experience more severe symptoms and may be more likely to use religion, denial and behavioural disengagement to cope with their condition compared with the White majority. CONCLUSIONS: Although available studies and data are limited, it does appear that some ethnic minority groups are more likely to suffer from CF and CFS compared with White people. Ethnic minority status alone is insufficient to explain ethnic variation of prevalence. Psychosocial risk factors found in high-risk groups and ethnicity warrant further investigation to improve our understanding of aetiology and the management of this complex condition.