Determinants of Age at Menarche in the Newcastle Thousand Families Study

Early life determinants of age at menarche were investigated for female participants in the longitudinal Thousand Families Study based in Newcastle upon Tyne. Age at menarche was collected retrospectively from 276 participants at the age 50 follow-up in 1997. Birth weight, length of gestation, height, weight, duration of breast feeding, social class, periods of infection, and quality of housing conditions in childhood were collected prospectively. Ordinal logistic regression was used to test univariate and multivariable associations of fetal and childhood data with menarcheal age group membership. Separation into 3 menarcheal age groups was made with respect to distance in standard deviations from the sample mean: early (μ->1 SD), middle (μ±1SD). Regression models were also used to test univariate and multivariable associations between fetal and childhood data and age at menarche as a continuous variable. Two main independent associations were observed: girls who experienced a shorter gestation and girls who were heavier at age 9 had earlier menarche. Birth weight adjusted for gestational age was found to have different relationships with age at menarche depending upon how heavy or light a girl was at age 9. The results of this study support the hypothesis that fetal conditions are associated with the timing of menarche and the hypothesis that greater childhood tissue growth is associated with earlier menarche. It is suggested that future work should focus on illuminating the mechanisms underlying these statistical relationships

What does engagement mean to participants in longitudinal cohort studies?:A qualitative study

Abstract Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusion The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies

The interview as narrative ethnography : seeking and shaping connections in qualitative research.

Acts of counter-subjectification in qualitative research are always present but are often submerged in accounts that seek to locate the power of subjectification entirely with the researcher. This is particularly so when talking to people about sensitive issues. Based on an interview-based study of infertility and reproductive disruption among British Pakistanis in Northeast England, we explore how we, as researchers, sought and were drawn into various kinds of connections with the study participants; connections that were actively and performatively constructed through time. The three of us that conducted interviews are all female academics with Ph.Ds in anthropology, but thereafter our backgrounds, life stories and experiences diverge in ways that intersected with those of our informants in complex and shifting ways. We describe how these processes shaped the production of narrative accounts and consider some of the associated analytical and ethical implications

Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Funder: Franca FundFunder: Canada Research Chair in Law and MedicineFunder: Canada Institute of Health ResearchFunder: Genome QuebecFunder: Genome CanadaFunder: Can-SHARE ConnectFunder: CIHRDespite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders' perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants

The ECOUTER methodology for stakeholder engagement in translational research.

BACKGROUND: Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes (as a patient or member of the public). Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others (the many 'publics' of engagement) brings them closer to the research but also brings the research closer to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. METHODS: In practice, engagement faces numerous challenges and is often time-consuming, expensive and 'thorny' work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER (Employing COnceptUal schema for policy and Translation Engagement in Research) methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, "How could it be otherwise?" ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of 'keeping open' the possible considerations that might emerge and including reflexive use of qualitative analytic methods. RESULTS: This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to 'open up' engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: (1) engagement and knowledge exchange; (2) analysis of mindmap contributions; (3) development of a conceptual schema (i.e. a map of concepts and their relationship); and (4) feedback, refinement and development of recommendations. CONCLUSION: ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it

GPs' explanatory models for irritable bowel syndrome: a mismatch with patient models?

Background. Inconsistencies in doctors’ views about causes and treatment of irritable bowel syndrome (IBS) lead to frustration for doctors and in doctor–patient interactions. Diagnosis by GPs does not correspond well to established diagnostic criteria. Objective. To understand GPs’ explanatory models (EMs) and management strategies for IBS. Methods. Qualitative, semi-structured interviews with 30 GPs (15 from the UK and 15 from The Netherlands). Results. Diagnosing IBS in primary care is a complex process, involving symptoms, tests, history and risk calculation. GPs were uncertain about the aetiology of IBS, but often viewed it as a consequence of disordered bowel activity in response to stress, which was viewed as a function of people's responses to their environment. GPs tend to diagnose IBS by exclusion, rather than with formal diagnostic criteria. They endeavoured to present the IBS diagnosis to their patients in a way that they would accept, fearing that many would not be satisfied with a diagnosis that had no apparent physical cause. GPs focused on managing symptoms and reassuring patients. Many GPs felt that patients needed to take the responsibility for managing their IBS and for minimizing its impact on their daily lives. However, the GPs had limited awareness of the extent to which IBS affected their patients’ daily lives. Conclusions. GPs’ diagnostic procedures and EMs for IBS are at odds with patient expectations and current guidelines. Shared discussion of what patients believe to be triggers for symptoms, ways of coping with symptoms and the role of medication may be helpful

Patients' explanatory models for irritable bowel syndrome: symptoms and treatment more important than explaining aetiology

Background. Irritable bowel syndrome (IBS) is a common condition associated with no certain organic cause, though diet and stress are widely implicated. The condition is frustrating for both sufferers and doctors, and there are problems in diagnosing and treating the condition. Eliciting explanatory models (EMs) is a useful tool for understanding how individuals relate to their illnesses and their expectations for treatment, particularly for illnesses with uncertain aetiology like IBS. Objectives. To understand the EMs, experiences and expectations for management of patients with IBS. Methods. Qualitative, semi-structured interviews were conducted with 51 primary care patients (31 in the UK, 20 in The Netherlands) meeting the Rome II diagnostic criteria for IBS. Results. Although IBS often had a significant dampening effect on daily life, IBS patients made great efforts not to allow the condition to take over their lives. Triggers of symptoms were more important to patients than understanding the underlying aetiology of IBS. Diet and stress were both recognized as important triggers, but views about which foods were problematic and the extent to which stress was modifiable were inconsistent. Diagnosis and treatment were often a confusing and frustrating process, and patients often expected more diagnostic tests than they were offered before receiving a diagnosis of IBS. However, the often poor outcome of medical interventions does not, in general, appear to have a negative impact on the patient–doctor relationship. Conclusions. Clinicians should be aware of the extensive impact of IBS on sufferers’ daily life and the frustration that results from repeatedly trying treatments with little effect. Clearly explaining the guidelines for diagnosing IBS and the range of treatment options may help patients to make sense of the diagnostic and treatment processes. The personal EM should be addressed during the consultation with the IBS patient, ensuring that any successive medical interventions match with the patients’ disease perception