Diana Pasterfield

Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying

Background: Assisted dying is legal in four European countries and three American states. Elsewhere, particularly in more affluent or mainly Protestant countries, it remains controversial. Dominant headlines feature professional (medical, legal, religious) arguments versus celebrity campaigners; ordinary people are less clearly represented. Aim: To synthesise the international evidence of people’s views and attitudes towards assisted dying in order to inform current debate about this controversial issue. Design: Systematic review and mixed method synthesis of qualitative and survey data Data sources: Eleven electronic databases from inception to October 2011; bibliographies of included studies Review Methods: Two reviewers independently screened papers and appraised quality. Qualitative results were extracted verbatim; survey results were summarised in a table. Qualitative data were synthesised using framework methods and survey results integrated where they supported, contrasted or added to the themes identified. Results: Sixteen qualitative studies and 94 surveys were included; many participants considered the immediate relevance of assisted dying for them. Themes related to poor quality of life, a good quality of death, potential abuse of assisted dying and the importance of individual stance. People valued autonomy in death as much as in life. Attitudes were diverse, complex and related to definitions of unbearable suffering including physical, psycho-social and existential factors and were consistent regardless of social, economic, legal and health-care contexts. Conclusion: Our review sheds light on ordinary people’s perspectives about assisted dying, when they are ill or disabled. Unbearable suffering is a key construct, and common factors are revealed that lead people to ask for help to die. The consistency of international views indicates a mandate for legislative and medical systems worldwide to listen and understand this.

Are women ready for the new cervical screening protocol in England? A systematic review and qualitative synthesis of views about human papillomavirus testing

Background:A new protocol for human papillomavirus (HPV) testing within the UK cervical screening programme commenced in April 2011, creating new patient experiences. This is the first review to synthesise a substantial body of international evidence of women’s information needs, views and preferences regarding HPV testing. We aimed to inform the development of educational materials to promote informed choice, reduce anxiety and improve disease control.Methods:We searched 12 bibliographic databases. Two reviewers independently screened papers and assessed study quality; disagreements were resolved by discussion. Results were extracted verbatim and authors’ findings treated as primary data. Studies were synthesised collaboratively using framework methods.Results:We synthesised findings from 17 studies. Women had overwhelmingly negative concerns; an HPV diagnosis was daunting, had associated problems of disclosure of a sexually transmitted infection (STI), impacted on relationships and provoked fear of stigmatisation. Nevertheless, many thought HPV testing could be a preferable alternative to repeat cytology. Knowledge was poor; women struggled to interpret limited information in the context of existing knowledge about STIs and cervical cancer.Conclusion:Women are likely to be poorly informed, have limited understanding and many unanswered questions. This could increase anxiety and reduce ability to make informed choices, presenting a substantial challenge for those who design and provide information.

Intervention Now To Eliminate Repeat Unintended Pregnancy in Teenagers (INTERUPT): a systematic review of intervention effectiveness and cost-effectiveness, qualitative and realist synthesis of implementation factors and user engagement

Background The UK has the highest rate of teenage pregnancies in Western Europe, a fifth are repeat pregnancies. Unintended conceptions can result in emotional, psychological and educational harm to teenage girls, often with enduring implications for their life chances. Babies of teenage mothers have increased mortality in their first year and increased risk of poverty, educational underachievement and unemployment later in life, with associated societal costs. Methods and analysis We will conduct a streamed, mixed-methods systematic review to find and evaluate interventions designed to reduce repeat unintended teen pregnancies. Our aims are to identify Who is at greater risk of repeat unintended pregnancies? Which interventions are effective, cost-effective, how they work, in what setting and for whom? What are the barriers and facilitators to intervention uptake? Traditional electronic database searches will be augmented by targeted searches for evidence ‘clusters’ and guided by an advisory group of experts and stakeholders. To address the topics inherent complexities, we will use a highly structured, innovative and iterative approach combining methodological techniques tailored to each stream of evidence. Quantitative data will be synthesised with reference to Cochrane guidelines for public health interventions. Qualitative evidence addressing facilitators and barriers to the uptake of interventions, experience and acceptability of interventions will be synthesised thematically. We will apply the principles of realist synthesis to uncover theories and mechanisms underpinning interventions. We will conduct an integration and overarching narrative of findings authenticated by client group feedback. Ethics and dissemination We will publish the complete review in ‘Health Technology Assessment’ and sections in specialist peer-reviewed journals. We will present at national and international conferences in the fields of public health, reproductive medicine and review methodology. Findings will be fed back to service users and practitioners via workshops run by the partner collaborators. Trail registration number PROSPERO CRD42012003168. Cochrane registration number i=fertility/0068.

Determining patient and primary care delay in the diagnosis of cancer - lessons from a pilot study of patients referred for suspected cancer.

BackgroundThere is no validated way of measuring diagnostic delay in cancer, especially covering patient and primary care delays. An instrument is needed in order to determine the effect of potential interventions to reduce delay and improve cancer morbidity and mortality.MethodsDevelopment of a postal questionnaire tool to measure patient and primary care time responses to key symptoms and signs. The pilot questionnaire was sent to 184 patients with suspected cancer.ResultsThe response rate was only 85/184 (46.2%). Anxiety was cited as one reason for this low response. Patients returning questionnaires were more likely to be women and more likely to be younger. 84/85 (98.8%) provided consent to access medical records, and questions regarding health profile, smoking and socio-economic profile were answered adequately. Outcome data on their cancer diagnosis was linked satisfactorily and the question about GP-initiated investigations was answered well. Estimated dates for symptom duration were preferred for patient delays, but exact dates were preferred for primary care delays; however there was a significant amount of missing data.ConclusionA more personal approach to the collection of data about the duration of symptoms in this group of people is needed other than a postal questionnaire. However elements of this piloted questionnaire are likely to figure strongly in future development and evaluation of this tool.

Enhancing ventilation in homes of children with asthma: pragmatic randomised controlled trial

BACKGROUND Few robust studies have tested whether enhancing housing also improves health. AIM To evaluate the effectiveness of installing ventilation systems, and central heating where necessary, in the homes of children with moderate or severe asthma. DESIGN AND SETTING Pragmatic randomised controlled trial (RCT) in homes within Wrexham County Borough, Wales, UK. METHOD A pragmatic RCT was carried out, of a tailored package of housing improvements providing adequate ventilation and temperature, following inspection by a housing officer. One hundred and ninety-two children with asthma aged 5 to 14 years, identified from general practice registers, were randomised to receive this package, either immediately or a year after recruitment. At baseline, and after 4 and 12 months, parents reported their childs asthma-specific and generic quality of life, and days off school. RESULTS The package improved parent-reported asthma-specific quality of life significantly at both 4 and 12 months. At 12 months, this showed an adjusted mean difference between groups of 7.1 points (95% confidence interval [CI] = 2.8 to 11.4, P= 0.001): a moderate standardised effect size of 0.42. The generic quality-of-life scale showed reported physical problems were significantly reduced at 4 months, but not quite at 12 months, when the mean difference was 4.5 (95% CI = -0.2 to 9.1, P= 0.061). The improvement in psychosocial quality of life at 12 months was not significant, with a mean difference of 2.2 (95% CI = -1.9 to 6.4, P= 0.292). Parent-reported school attendance improved, but not significantly. CONCLUSION This novel and pragmatic trial, with integrated economic evaluation, found that tailored improvement of the housing of children with moderate to severe asthma significantly increases parent-reported asthma-related quality of life and reduces physical problems. Collaborative housing initiatives have potential to improve health.

Patient-reported measurement of time to diagnosis in cancer: development of the Cancer Symptom Interval Measure (C-SIM) and randomised controlled trial of method of delivery

BackgroundThe duration between first symptom and a cancer diagnosis is important because, if shortened, may lead to earlier stage diagnosis and improved cancer outcomes. We have previously developed a tool to measure this duration in newly-diagnosed patients. In this two-phase study, we aimed further improve our tool and to conduct a trial comparing levels of anxiety between two modes of delivery: self-completed versus researcher-administered.MethodsIn phase 1, ten patients completed the modified tool and participated in cognitive debrief interviews. In phase 2, we undertook a Randomised Controlled Trial (RCT) of the revised tool (Cancer Symptom Interval Measure (C-SIM)) in three hospitals for 11 different cancers. Respondents were invited to provide either exact or estimated dates of first noticing symptoms and presenting them to primary care. The primary outcome was anxiety related to delivery mode, with completeness of recording as a secondary outcome. Dates from a subset of patients were compared with GP records.ResultsAfter analysis of phase 1 interviews, the wording and format were improved. In phase 2, 201 patients were randomised (93 self-complete and 108 researcher-complete). Anxiety scores were significantly lower in the researcher-completed group, with a mean rank of 83.5; compared with the self-completed group, with a mean rank of 104.0 (Mann-Whitney U = 3152, p = 0.007). Completeness of data was significantly better in the researcher-completed group, with no statistically significant difference in time taken to complete the tool between the two groups. When comparing the dates in the patient questionnaires with those in the GP records, there was evidence in the records of a consultation on the same date or within a proscribed time window for 32/37 (86%) consultations; for estimated dates there was evidence for 23/37 consultations (62%).ConclusionsWe have developed and tested a tool for collecting patient-reported data relating to appraisal intervals, help-seeking intervals, and diagnostic intervals in the cancer diagnostic pathway for 11 separate cancers, and provided evidence of its acceptability, feasibility and validity. This is a useful tool to use in descriptive and epidemiological studies of cancer diagnostic journeys, and causes less anxiety if administered by a researcher.Trial registrationISRCTN04475865

Talking about human papillomavirus and cancer: development of consultation guides through lay and professional stakeholder coproduction using qualitative, quantitative and secondary data

Background High-risk human papillomaviruses (HPVs) cause all cervical cancer and the majority of vulvar, vaginal, anal, penile and oropharyngeal cancers. Although HPV is the most common sexually transmitted infection, public awareness of this is poor. In addition, many clinicians lack adequate knowledge or confidence to discuss sexual transmission and related sensitive issues. Complex science needs to be communicated in a clear, digestible, honest and salient way. Therefore, the aim of this study was to coproduce with patients who have cancer appropriate resources to guide these highly sensitive and difficult consultations. Methods A matrix of evidence developed from a variety of sources, including a systematic review and telephone interviews with clinicians, supported the production of a draft list of approximately 100 potential educational messages. These were refined in face-to-face patient interviews using card-sorting techniques, and tested in cognitive debrief interviews to produce a ‘fast and frugal’ knowledge tool. Results We developed three versions of a consultation guide, each comprising a clinician guidance sheet and patient information leaflet for gynaecological (cervical, vaginal, vulvar), anal or oropharyngeal cancers. That cancer could be caused by a sexually transmitted virus acquired many years previously was surprising to many and shocking to a few patients. However, they found the information clear, helpful and reassuring. Clinicians acknowledged a lack of confidence in explaining HPV, welcomed the clinician guidance sheets and considered printed information for patients particularly useful. Conclusion Because of the ‘shock factor’, clinicians will need to approach the discussion of HPV with sensitivity and take individual needs and preferences into account, but we provide a novel, rigorously developed and tested resource which should have broad applicability in the UK National Health Service and other health systems.

Reducing repeat pregnancies in adolescence: applying realist principles as part of a mixed-methods systematic review to explore what works, for whom, how and under what circumstances

BackgroundPrevious research has demonstrated emotional, psychological and educational harm to young mothers following unintended conceptions. The UK has one of the highest rates of pregnancies in adolescence in Western Europe with a high proportion of these being repeat pregnancies, making it a topic of interest for public health policy makers, and health and social care practitioners. As part of a wider mixed-methods systematic review, realist principles were applied to synthesise evidence about interventions aiming to reduce repeat pregnancies in adolescence.MethodsA multi-streamed, mixed-methods systematic review was conducted searching 11 major electronic databases and 9 additional databases from 1995 onwards, using key terms such as pregnancy, teen or adolescent. The principles of realist synthesis were applied to all included literature to uncover theories about what works, for whom, how and in what context. Initial theory areas were developed through evidence scoping, group discussion by the authors and stakeholder engagement to uncover context + mechanism = outcome (CMO) configurations and related narratives.ResultsThe searches identified 8,664 documents initially, and 403 in repeat searches, filtering to 81 included studies, including qualitative studies, randomised controlled trials, quantitative studies and grey literature. Three CMO configurations were developed. The individual experiences of young mothers’ triggered self-efficacy, notions of perceived risks, susceptibility and benefits of pregnancy, resulting in the adolescent taking control of their fertility and sexual encounters. The choice between motherhood and other goals triggered notions of motivations, resulting in the adolescent managing their expectations of motherhood and controlling their fertility and sexual encounters. Barriers and facilitators to accessing services triggered notions of connectedness and self-determination; resulting in interventions that are tailored so they are relevant to young persons, and improve access to services and engagement with the issue of pregnancy in adolescence.ConclusionsPregnancy in adolescence is a complex issue with many factors to consider. The conceptual platform described here could help guide policy makers and professionals towards a number of areas that need to be attended to in order to increase the likelihood of an intervention working to prevent rapid repeat pregnancy in adolescence.Trial RegistrationPROSPERO CRD42012003168

An embedded realist review of what works, for whom, how, and in what circumstances to reduce repeat pregnancies in adolescence: a systematic mixed-methods review

Abstract Background The UK has one of the highest rates of pregnancies in adolescence in western Europe; a large number of them are repeat pregnancies. Previous research has demonstrated substantial emotional, psychological, and educational harm to young mothers after unintended conceptions. We aimed to synthesise evidence about how to reduce repeat pregnancies in adolescence. Methods A multistreamed, mixed-methods systematic review was conducted. Between May 8 and May 27, 2013, we searched the major electronic databases for articles published from 1995 onwards, and updated the search between June 11 and June 16, 2014 (see appendix for list of databases and search terms used). No language restrictions were imposed during the searches; however, grey literature searches were restricted to English and a UK context, to enhance applicability of results to UK public health agencies. Data extraction was conducted independently by two reviewers, and disagreements resolved by a third reviewer if necessary. The principles of realist synthesis were applied to all included literature to uncover theories about what works, for whom, how, and in what context. Included literature was quality appraised with realist principles of relevance and rigor. Initial theory areas were developed through scoping the evidence, group discussion by the authors, and stakeholder engagement. Stakeholders included representatives from public health, primary care, sexual health, obstetrics, midwifery, and adolescent mothers. Theory areas were further refined and populated with evidence that either confirmed or contradicted the theory. A deliberative synthesis process resulted in the surfacing of an emerging story that included several key contexts and mechanisms, which resulted in a number of outcomes (context+mechanism=outcome configurations). Findings The searches identified 8664 documents initially, and 816 in repeat searches, filtering to 12 randomised controlled trials (RCTs), four quasi RCTs, ten qualitative studies, and 53 other quantitative studies published from 1995 to 2013. Four documents found in searches of the grey literature were also included in the realist synthesis. Contexts included experiences of young mothers, their knowledge and understanding, and their community or psychological perspective. Mechanisms included tailoring, motivations, and taking control. Potential outcomes resulting from the context+mechanism=outcome configurations included managing expectations, accessing services, and engagement with the issue of pregnancy in adolescence. Interpretation Pregnancy in adolescence is a complex issue, with many factors to consider. The key contexts and mechanisms highlighted can help guide policy makers and professionals towards areas that need to be attended to concerning the issue of repeat pregnancy in adolescence. These findings provide a conceptual platform on which proposed interventions might be built to enhance their potential to work. Funding This work was funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) project number 11/141/05.

Interventions for preventing unintended repeat pregnancies among adolescents

This is the protocol for a review and there is no abstract. The objectives are as follows: To identify and evaluate the effectiveness of interventions for preventing repeat unintended pregnancies among adolescents, and to determine the barriers and facilitators for their implementation and uptake. Specific review question are to determine: What are the barriers and facilitators to the acceptability, uptake and implementation of interventions? What factors characterise subgroups who are at greater risk of repeat unintended pregnancies (i.e. what are the predictors of repeat unintended pregnancy)? Which (elements of) interventions appear to be effective, how do they work, in what setting and for whom (conversely, why are they ineffective, why do they not work)? What evidence is there on the relative cost-effectiveness of interventions to prevent teenage pregnancy? What specific methodological challenges does application of health economics to this area raise and how are these challenges being overcome?