Divya Manoharan, Deepika Manoharan, and Ala Noaman, compile researchers’ descriptions of their work currently being undertaken at the School of Medicine.
Dr. Morven Shearer begins our collection of current research in the medical school
I joined the medical school just over a year ago, in February 2012, as an Academic Fellow in the areas of public health policy and medical ethics. I’m particularly interested in the policies and ethics surrounding healthcare and children, in particular access to healthcare, and the pharmaceutical industry.
I’m involved in two projects with Prof Peter Donnelly (Professor of Public Health) and Mr James Robb (Consultant Paediatric Orthopaedicsurgeon) aimed at optimising the care of children with cerebral palsy (CP). The first project I’ll discuss is now in its second year, and it involves the introduction of a national register and hip surveillance programme for children with cerebral palsy, in the hope that children with severe CP, who are at risk of hip displacement, can be closely monitored and have early sur- gical intervention, rather than presenting later when hip is displaced and in pain. The idea behind this project may seem quite simple – how difficult can it be to get a list of children with cerebral palsy and implement a surveillance programme?
The reality, however, is far from simple, but we’ve made good progress, mapping out the current referral pathways in different regions and working with Swedish collaborators, orthopaedic surgeons, physiotherapists, community paediatricians, and occupational therapists. More details of the project are given elsewhere in this newsletter by Fulbright Scholar, Kim Stevenson.
The second project that is being carried out in the area of cerebral palsy is also dis- cussed in this newsletter by MRes student Alice Wright. This project is seeking to understand the current transition process for children with CP as they move from integrated paediatric care into adult services. This time of transition is crucial for the child in many ways, and so making sure that the process happens efficiently and effectively is essential.
Children: therapeutic orphans & pharmaceutical regulation
This summer I’ll be a visiting fellow at the ESRC Innogen Centre at the University of Edinburgh. During my fellowship I’ll be analysing the legislation addressing the involvement of children in clinical trials and comparing US and European approaches to pharmaceutical regulation. More than 40 years ago, the paediatrician Dr Harry Shirkey coined the phrase “therapeutic orphan” to describe the paediatric population in medicine who, through being excluded from clinical drug trials, were left bereft of paediatric-specific medications, and exposed to risk and substandard care through the paucity of paediatric-appropriate prescribing guidance. Since then, this situation has gradually changed. The awareness that exclusion of children from clinical trials led not to their protection; but rather, to harm through their exposure to off-label prescribing, has led to a change in legislation in both the US and Europe. I’m interested in understanding the factors that have influenced these chang- es, and the implications of these changes to patients and pharmaceutical companies.
Linked in with this idea of children being “left out” of clinical trials, but now looking at it through the lens of medical humanities, I’ll be present- ing a paper at the Association of Medical Humanities conference in July entitled “Children as a vulnerable population: protected or neglected?” Children are often characterised within the healthcare setting as a particularly vulnerable population, and hence in need of protection. However, this well-intentioned protective response has led to a situation where, as described above, children can be paradoxically viewed as neglected; exposed to greater risk and poorer care than adults with similar conditions.
In this paper, aspects of identity and the subsequent relationship between the paediatric patient and the healthcare profession will be explored.
Within this article I have only discussed two areas of my research, but I would be interested in hearing from any students who wish to undertake research in either of the above areas, or other aspects of medical ethics.
Transition from paediatric to adult health services for people with Cerebral Palsy
The transition from paediatric to adult health services has often been described as troublesome. Poor planning and lack of coordination result in a reduction of services. These difficulties are particularly prominent for young people with cerebral palsy (CP), where there is neither a clear referral pathway to adult services, nor a single service responsible for providing medical care.
Before transition provision can be improved, it is necessary to have a better understanding of the current transition provision and why the reported problems are occurring. However, no research to date has been conducted in the UK investigating the transition from the point of view of clinicians. Additionally, very little research has investigated transition in Scotland despite the fact that Scotland has a separate NHS and separate health policies. Our research therefore aims to investigate the process of transition from paediatric to adult health care for people with CP from the point of view of clinicians who work with these young people. Specifically, our research aims to establish what provisions are currently available from transition in Scotland and what clinicians believe future provisions should involve.
Semi-structured interviews were designed based on a re- view of the existing transition literature and government guidelines. 13 community paediatricians from 12 health boards and 3 other clinicians involved in the care of young people with CP have been interviewed. These interviews will be used to provide an accurate description of transition in Scotland and analysed qualitatively using a thematic approach.
Cerebral palsy (CP) is an umbrella term describing non-progressive, but often-changing, motor disorders due to a brain lesion sustained during the early years of life. Hip dislocation is predicted to affect 15-20% of all children with CP due to muscle imbalance and tone (Hägglund et al., 2005). Problems associated with hip dislocation include pain, scoliosis, and difficulty with perineal care.
The risk of hip displacement, which can lead to dis- location, is directly related to the motor impairment of the child measured by the five- level Gross Motor Function Classification System (Sooet al., 2006). In Sweden, a hip surveillance programme name CPUP has decreased the incidence of hip dislocation from 10% to 0%. There are three main aspects to the programme: a standardised clinical examination with a physiotherapist, an annual hip radiograph, and a consultation and intervention with an orthopaedic surgeon (Hägglund et al., 2005).We aim to understand if and how a Scandinavian-based hip surveillance programme can be implemented in Scotland. Based upon similarities between Scotland and Sweden, we believe that a similar hip surveillance programme would be successful here.
Interviews with orthopaedic surgeons, physiotherapists, occupational therapists, and other key personnel in Scotland and Sweden will help us develop several models that could be successful in Scotland. Interviews will include structured and semi-structured questions aimed at revealing processes and attitudes pertaining to the hip surveillance programme. Potential models will be rated by healthcare professionals in Scotland that have a vested interest in a future hip surveillance programme using a multi-round Delphi consensus process. Through analysis of the Delphi process results, one model will be nominated for implementation. Once implemented, an eventual hip surveillance programme in Scotland has the potential to eliminate the risk of hip dislocation and drastically improve the quality of life for children with CP.
Elizabeth Craig Clinical trials assistant
Tayside and Fife Asthma and Allergy Research Group
Loss of symptom control can result in exacerbations or “asthma attacks”, which place a significant burden on both the patient and the health service. 90% of exacerbations are thought to be preventable through better symptom control. However, at present, there is no accurate test to identify patients who are at risk.
Tayside and Fife Asthma and Allergy Research Group are currently conducting an observational cohort study to look for a way of predicting exacerbation risk. Participants with a diagnosis of asthma are invited to attend for two study visits where they complete 5 diagnostic tests; spirometry to measure lung function, fraction of exhaled nitric oxide (FENO) and mannitol bronchial challenge to measure airway inflammation, methacholine bronchial challenge to measure airway responsiveness, and validated symptom score questionnaires to measure quality of life.
After completing the study visits participants enter an 18 month follow up period where prescription and hospitalisation records are monitored to look for any link between the diagnostic or biological test results and exacerbation rates.
If such a relationship can be found, it is hoped that the use of pre-emptive measures could prevent many exacerbations from occurring to reduce the physical and economic burden of asthma.
Benefits of a person-centred approach to investigating environmental causes of ill-health
An environmental incident can be described as as exposure to an environmental agent, which has the potential to cause harm to health. Examples include contaminated land and water courses. The effects of environmental incidents are wide- ranging with implications beyond that of physical health effects including detriments to mental health, and social and economic effects, which are described as ‘psychosocial’ effects (Page et al., 2006).
The current practice of investigating concerns about environmental causes of ill- health focuses primarily on the physical health effects (Spurgeon, 2002). This fundamental but narrow-minded approach does not address the wider psychosocial implications, which can have devastating effects for the individual and the community involved. Torectify this, a person-centred approach has been developed by Hyland et al. (2011), which aims to address both the physical and the psychosocial components. This model describes an approach involving meetings with the individual in person and discussing their concerns in order to fully understand and appreciate the problem from the point of view of the individual.
Healthcare provision is undergoing a transition towards a patient orientated framework of care as described
in the NHS Scotland Quality Strategy (NHS Scotland, 2010). Three key healthcare ambitions are outlined: that of patient-centredness, safety and effectiveness.
This study involves an experimental research design, which aims to test the utility of a person-centred approach in comparison to a standard approach for the investigation of concerns about environmental causes of ill- health. The two approaches will be compared with regard to how well they comply with the Quality Strategy guidance of being patient-centred and effective. These outcomes will be inferred through the measurement ofindividual well-being, satisfaction and perceived control. This will be done through the use of questionnaires both pre- and post- intervention. Case studies will be written up from a select number of investigations.
- Hyland, J., Donnelly, P. (2011) A scientific and psychosocial environmental investigation tool: the Meeting, Understand- ing, Surveillance, Toxicology, Evaluation and Reporting (MUSTER) model. Postgradu- ate Medical Journal, 87, 453- 457.
- NHS Scotland. (2010) The Healthcare Quality Strategy for NHS Scotland. [online] Available from: http://www. scotland.gov.uk/Resource/ Doc/311667/0098354.pdf [Ac- cessed April 4th 2012].
- Page, L., Petrie, K., Wessely, S. (2006) Psychosocial responses to environmental incidents: A review and a proposed typol- ogy. Journal of Psychosomatic Research, 60, 413-422.
- Spurgeon, A. (2002) Models of Unexplained Symptoms Asso- ciated with Occupational and Environmental Exposures. En- vironmental Health Perspec- tives, 110 (suppl. 4): 601-605.
A Public health approach to preventing youth violence
Violence is a preventable, but leading, cause of death and disability in young people (Krug et al., 2002). Glasgow, in particular, has a longstanding problem with youth violence, associated with a gang culture, knife culture, and alcohol misuse (McAra, 2008), which con- tributes to its status as the “murder capital of Western Europe”.
The World Health Organization argues that a public health approach, which has a strong emphasis on prevention, should be utilised to reduce the burden of violence (Krug et al., 2002).
As the majority of young peoples’ social learning takes place at school, schools are ideally placed to implement primary prevention programmes (Wolfe & Jaffe, 1999). Medics Against Violence (MAV) is an example of a school-based primary prevention initiative to tackle violence among Scotland’s youths (Goodall et al., 2010). MAV sessions involve a graphical demonstration of the consequences of violence and discussion of alternatives to violence, delivered voluntarily to classes of secondary school students by healthcare workers.
They aim to change attitudes towards violence, which mediate translation of aggressive thoughts into violent behaviour (Ikeda et al., 2001).
The MAV evaluation utilises a mixed-methods approach and data collection is ongoing. First, changes in attitudes towards violence are measured using the Attitudes Towards Violence Scale (Funk et al., 2003) immediately before and after the session, and at 3-months. Focus groups are then used to explore students’ views on youth violence and experiences of the session. Additionally, sessions are observed and semi-structured interviews with teachers explore perceived effects on students’ behaviour.
Finally, police and school data on levels of violence will be examined. The results of the evaluation will establish whether such an intervention is effective changing attitudes towards violence and violent behaviour and will help guide future interventions.