98 research outputs found
Re: "Invited Commentary: The Disillusionment of Developmental Origins of Health and Disease (DOHaD) Epidemiology"
No full textExperiences of adolescents living with Silver-Russell syndrome
No full textObjective: the psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by growth failure and short stature in adulthood, has been explored in adults; however, there are no accounts of contemporary lived experience in adolescents. Such data could inform current healthcare guidance and transition to adult services. We aimed to explore the lived experience of adolescents with SRS.Design/setting/patients: in-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of eight adolescents aged 13–18 (five girls) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences using thematic analysis; codes were then grouped to form overarching themes.Results: we identified four themes from the interview data: (1) the psychosocial challenges of feeling and looking different; (2) pain, disability and fatigue; (3) anticipated stigma; and (4) building resilience and acceptance. Despite adolescents accepting SRS in their lives, they described ongoing psychosocial challenges and anticipated greater problems to come, such as stigma from prospective employers.Conclusions: adolescents with SRS may experience psychosocial difficulties from as young as 10 years old related to feeling and looking different; pain, disability and fatigue; anticipated stigma; and future challenges around employment. We discuss these findings in relation to recommendations for the care of adolescents with SRS to prepare them for adult life
Body composition and metabolism in adults with molecularly-confirmed Silver-Russell syndrome
No full textContext: Low birth weight, as seen in Silver-Russell syndrome (SRS), is associated with later cardiometabolic disease. Data on long-term outcomes and adult body composition in SRS are limited. Objective: To evaluate body composition and metabolic health in adults with SRS. Methods: This was an observational study of 25 individuals with molecularly confirmed SRS, aged ≥ 18 years, from research facilities across the UK. Body composition and metabolic health were assessed at a single appointment. Individuals with SRS were compared with unaffected men and women (from the Southampton Women's Survey [SWS]). Fat mass, lean mass, bone mineral density (BMD), blood pressure, lipids, and blood glucose were measured. Results: Twenty-five adults with SRS were included (52% female). The median age was 32.9 years (range, 22.0 to 69.7). Fat percentage was greater in the SRS group than the SWS cohort (44.1% vs 30.3%, P < .001). Fat mass index was similar (9.6 vs 7.8, P = .3). Lean mass percentage (51.8% vs 66.2%, P < .001) and lean mass index (13.5 kg/m2 vs 17.3 kg/m2, P < .001) were lower in the SRS group than the SWS cohort. BMD was lower in the SRS group than the SWS cohort (1.08 vs 1.24, P < .001; all median values). Total cholesterol was ≥ 5 mmol/L in 52.0%. Triglyceride levels were ≥ 1.7 mmol/L in 20.8%. Fasting blood glucose levels were ≥ 6.1 mmol/L in 25.0%. Hypertension was present in 33.3%. Conclusion: Adults with SRS have an unfavorable body composition and predisposition to cardiometabolic disease. These results support the need for a health surveillance strategy to mitigate adverse outcomes.</p
Phenotype of genetically confirmed Silver-Russell syndrome beyond childhood
No full textBackground Silver-Russell syndrome is an imprinting disorder that restricts growth, resulting in short adult stature that may be ameliorated by treatment. Approximately 50% of patients have loss of methylation of the imprinting control region (H19/IGF2:IG-DMR) on 11p15.5 and 5%–10% have maternal uniparental disomy of chromosome 7. Most published research focuses on the childhood phenotype. Our aim was to describe the phenotypic characteristics of older patients with SRS.Methods A retrospective cohort of 33 individuals with a confirmed molecular diagnosis of SRS aged 13 years or above were carefully phenotyped.Results The median age of the cohort was 29.6 years; 60.6% had a height SD score (SDS) ≤−2 SDS despite 70% having received growth hormone treatment. Relative macrocephaly, feeding difficulties and a facial appearance typical of children with SRS were no longer discriminatory diagnostic features. In those aged ≥18 years, impaired glucose tolerance in 25%, hypertension in 33% and hypercholesterolaemia in 52% were noted. While 9/33 accessed special education support, university degrees were completed in 40.0% (>21 years). There was no significant correlation between quality of life and height SDS. 9/25 were parents and none of the 17 offsprings had SRS.Conclusion Historical treatment regimens for SRS were not sufficient for normal adult growth and further research to optimise treatment is justified. Clinical childhood diagnostic scoring systems are not applicable to patients presenting in adulthood and SRS diagnosis requires molecular confirmation. Metabolic ill-health warrants further investigation but SRS is compatible with a normal quality of life including normal fertility in many cases
The lived experience of Silver-Russell syndrome: implications for management during childhood and into adulthood
No full textObjective: There is limited information on the psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by slow growth in utero leading to short stature in adulthood. Such information could aid families in making difficult treatment decisions and guide management strategies for health professionals. We aimed to explore the lived experience of people with SRS across the lifespan. Design/setting/patients: In-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of fifteen adults (six women) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences: codes were then grouped to form overarching themes.Results: Four themes were identified from participant accounts: 1) Appearance-related concerns extending beyond height; 2) Strategies to deal with real and perceived threats; 3) Women’s experiences of pain, disability, and feeling older than their years; and 4) Feeling overlooked in romantic relationships. These themes show that other factors, beyond short stature, affect patient well-being and indicate a mismatch exists between patient need and healthcare provision.Conclusions: Challenges in SRS during childhood and adolescence were central to the psychosocial impact of SRS, and were not limited to height. These challenges, as well as symptoms such as pain and fatigue for women, have not previously been documented. To help individuals with SRS to develop strategies to manage psychosocial issues, we recommend clinicians incorporate psychological services as an integral part of multi-disciplinary teams managing individuals with SRS during childhood, adolescence, and adulthood. <br/
Behaviour change interventions: getting in touch with individual differences, values and emotions
No full textSystematic reviews and meta-analyses suggest that behaviour change interventions have modest effect sizes, struggle to demonstrate effect in the long term and that there is high heterogeneity between studies. Such interventions take huge effort to design and run for relatively small returns in terms of changes to behaviour. So why do behaviour change interventions not work and how can we make them more effective? This article offers some ideas about what may underpin the failure of behaviour change interventions. We propose three main reasons that may explain why our current methods of conducting behaviour change interventions struggle to achieve the changes we expect: 1) our current model for testing the efficacy or effectiveness of interventions tends to a mean effect size. This ignores individual differences in response to interventions; 2) our interventions tend to assume that everyone values health in the way we do as health professionals; and 3) the great majority of our interventions focus on addressing cognitions as mechanisms of change. We appeal to people's logic and rationality rather than recognising that much of what we do and how we behave, including our health behaviours, is governed as much by how we feel and how engaged we are emotionally as it is with what we plan and intend to do. Drawing on our team's experience of developing multiple interventions to promote and support health behaviour change with a variety of populations in different global contexts, this article explores strategies with potential to address these issues.</p
Twentieth Century Society Spring lecture series: second lives for Twentieth Century masterpieces
No full textThe Twentieth Century Society’s Spring lecture series (six in total) looks at the restoration and refurbishment of key C20 buildings in Britain and the US. Buildings covered:
BBC Broadcasting House in London (G Val Meyer 1930-32, MacCormac Jamieson Prichard 2000-09). Speaker: Mark Hines (Mark Hines Architects), was the project architect and is the author of The Story of Broadcasting House: Home of the BBC. 5 February 2009.
Crown Hall, Chicago (Mies van der Rohe 1952), the Art and Architecture Building, Yale University, New Haven (Paul Rudolf 1961-63) and the former Wills head office in Bristol (SOM with YRM 1970-75). Speaker: Patrick Bellew (Atelier 10 Engineers), 12 February 2009.
Center for British Art, Yale University, New Haven (Louis Kahn 1969-77). Speaker: Peter Inskip (Inskip and Jenkins Architects), 17 February 2009.
Brunswick Centre London (Patrick Hodgkinson 1967-72; Levitt Bernstein with Patrick Hodgkinson 2006). Speaker: Stuart Tappin (Stand Consulting Engineers Ltd), 26 February 2009.
De La Warr Pavilion, Bexhill-on-Sea (Mendelsohn and Chermayeff 1934-5, John McAslan and Partners 2000-05). Speaker: Mark Cannata (HOK Architects), 5 March 2009.
Finsbury Health Centre London (Lubetkin & Tecton 1938, first phase of conservation work Avanti Architects 1995.). Speaker: John Allan of Avanti Architects, 12 March 2009
Singaporean mothers' perception of their three-year-old child's weight status: A cross-sectional study
No full textSingapore National Research Foundation; National Medical Research Council (NMRC), SingaporeFull Author List: Cheng T.S.; Cheng T.; Loy S.; Cheung Y.; Chan J.; Tint M.; Godfrey K.; Gluckman P.; Kwek K.; Saw S.; Chong Y.; Lee Y.; Yap F.; Lek N.; Sheppard A.; Chinnadurai A.; Goh A.; Rifkin-Graboi A.; Qiu A.; Biswas A.; Lee B.; Broekman B.; Quah B.; Shuter B.; Chng C.; Ngo C.; Hsu S.; Bong C.; Henry C.; Chee C.; Fok D.; Yeo G.; Inskip H.; Chen H.; Van Bever H.; Magiati I.; Wong I.; Lau I.; Kapur J.; Richmond J.; Holbrook J.; Gooley J.; Tan K.; Niduvaje K.; Singh L.; Su L.; Daniel L.; Shek L.; Fortier M.; Hanson M.; Chong M.; Rauff M.; Chua M.; Meaney M.; Teoh O.; Wong P.; Agarwal P.; Van Dam R.; Rebello S.; Chong S.; Cai S.; Soh S.; Lim S.; Rajadurai V.; Stunkel W.; Han W.; Pang W.; Goh Y.; Chan Y.</p
Childhood socioeconomic position and objectively measured physical capability levels in adulthood: a systematic review and meta-analysis
No full text<p><b>Background:</b> Grip strength, walking speed, chair rising and standing balance time are objective measures of physical capability that characterise current health and predict survival in older populations. Socioeconomic position (SEP) in childhood may influence the peak level of physical capability achieved in early adulthood, thereby affecting levels in later adulthood. We have undertaken a systematic review with meta-analyses to test the hypothesis that adverse childhood SEP is associated with lower levels of objectively measured physical capability in adulthood.</p>
<p><b>Methods and Findings:</b> Relevant studies published by May 2010 were identified through literature searches using EMBASE and MEDLINE. Unpublished results were obtained from study investigators. Results were provided by all study investigators in a standard format and pooled using random-effects meta-analyses. 19 studies were included in the review. Total sample sizes in meta-analyses ranged from N = 17,215 for chair rise time to N = 1,061,855 for grip strength. Although heterogeneity was detected, there was consistent evidence in age adjusted models that lower childhood SEP was associated with modest reductions in physical capability levels in adulthood: comparing the lowest with the highest childhood SEP there was a reduction in grip strength of 0.13 standard deviations (95% CI: 0.06, 0.21), a reduction in mean walking speed of 0.07 m/s (0.05, 0.10), an increase in mean chair rise time of 6% (4%, 8%) and an odds ratio of an inability to balance for 5s of 1.26 (1.02, 1.55). Adjustment for the potential mediating factors, adult SEP and body size attenuated associations greatly. However, despite this attenuation, for walking speed and chair rise time, there was still evidence of moderate associations.</p>
<p><b>Conclusions:</b> Policies targeting socioeconomic inequalities in childhood may have additional benefits in promoting the maintenance of independence in later life.</p>
Meaning, communication, music: Towards a revised communication model
No full textPurpose:
If an information retrieval system is going to be of value to the user then it must give meaning to the information which matches the meaning given to it by the user. The meaning given to music varies according to who is interpreting it – the author/composer, the performer, cataloguer or the listener – and this affects how music is organized and retrieved. This paper examines the meaning of music, how meaning is communicated and suggests this may affect music retrieval.
Approach:
Musicology is used to define music and examine its functions leading to a discussion of how music has been organised and described. The limitations of notation are discussed. Various ways of establishing the meaning of music are reviewed, focussing on established musical analysis techniques. It is suggested that traditional methods are of limited use with digitised popular music. A discussion of semiotics and a review of semiotic analysis in Western art music leads to a discussion of semiotics of popular music and examines ideas of Middleton (1990), Stefani (1987) and Tagg (1999).
Findings:
Agreeing that music exists when communication takes place, a discussion of selected communication models leads to the proposal of a revised version of Tagg’s (1999) model, adjusting it to include listener feedback.
Originality/value of paper:
The outcome of the analysis is a revised version of Tagg’s (1999) communication model, adapted to reflect user feedback. It is suggested that this revised communication model would more accurately reflect user need in the design of music information retrieval systems
- …
