Meeting in Italy
The fifth meeting took place in Padua, Italy. The external evaluator presented her evaluation of the developed training material. Alex Clarke concluded that the material is of a high standard and will contribute significantly to the training of healthcare professionals. Two of the partners presented their outcomes the multiplier events they arranged, which was a great success.
A general discussion about the project was conducted, including the information that the project has been prolonged until the end of December 2019.
Knowledge significantly increased after the CET - training course!
The project included a purpose-designed pre and post KAPb test. This evaluation questionnaire was developed to measure the participants’ levels of knowledge before and after the training. It covers the three dimensions - Knowledge, Attitude and Practice behaviour in relation to the European Qualification Framework level 4. The KAP test consists of 26 questions that are administered before (pre) the training and after the training (post). The statistical analysis (T-test for paired samples) indicated a significant increase in knowledge.
Two invited presentations were given at a Training Day organised by Wigmore Medical for cosmetic practitioners (13th April 2019 Chester, UK)
- The psychology of the cosmetic patient
- Assessing prospective patients for cosmetic procedures
These presentations were designed as training sessions to raise awareness levels in cosmetic practitioners about the psychological factors motivating people to undergo cosmetic procedures (for example, Botox; injectable fillers; liposuction) and their expectations of the outcome. The CET project was discussed, and attendees were invited to engage with the CET modules and guidance via the project website.
Nichola delivered the prestigious B K Rank Keynote Address at the Plastic & Reconstructive Surgery Congress, Melbourne, May 30th 2019. In the opening presentation of the Congress entitled 'Don't Eat the Marshmallows and other techniques for improving standards of patient assessment' the 500 attendees (plastic and reconstructive surgeons) were informed about the CET project, and the link to the project materials was given. Nichola & Alex Clarke also delivered a Body Image workshop for 60 surgeons. The CET website was given to attendees as an illustration of authoritative evidence-based training materials for healthcare professionals
At a Keynote Address at the BAPRAS Annual Conference, 26th June 2019, Bournemouth, UK, entitled 'Between a Rock & a Hard Place: Challenges for Plastic Surgery in 2019' Nichola described the CET project to over 125 plastic and reconstructive surgeons from the UK and overseas. The project was offered as an example of good practice in translating research evidence to clinical settings.
European Cleft and Craniofacial Congress 12 - 15 June, Utrecht, Netherlands
Several partners from CET attended and presented at the European Congress in Utrecht in June. Over 700 delegates from around the world participated in the congress, themed Future perspectives in research & therapy. Professionals attending this congress benefited from high-level scientific presentations, knowledge sharing and networking opportunities, with the overall goal of promoting understanding and treatment of clefts and other craniofacial anomalies
There were dedicated sessions on psychology and opportunities to present the CET project in front of a large audience – indeed the auditorium was overflowing at one point. CET coordinator Martin Persson led a session Long term outcomes in cleft care – a European approach, focusing on how we can be sure we are inclusive in terms of providing care to a European population that is not always easy to reach given socio-economic and educational constraints.
Other CET partners spoke on different aspects of cleft care in Europe, including the new directory of resource (European Cleft Gateway) and parents’ experiences of early cleft care which illustrate the need for a much more patient/parent-centred approach to care.
Above all, the Congress provided excellent networking opportunities in Europe and beyond with opportunities explores for future collaboration in terms of research, education and sharing best clinical practice.
ACPA Congress Tucson, Arizona 10 -13 April 2019
Executive Director of ECO Gareth Davies attended and presented at the 76thCongress of the American Cleft Palate Craniofacial Association in Arizona, April 10 – 13, where he showcased some of ECO’s projects. The congress attracted over 750 delegates from all over the world.
Gareth Davies presented papers on two Erasmus + funded grant programmes, the first developing training in the early care of babies born with clefts and the second, the CET programme developing training for surgeons and cleft team members helping them understand expectations of surgery in children and older patients. He was also involved in presenting a paper on the development of global programme standards for the delivery of cleft care in his role as coordinator of the World Cleft Coalition. You can download the standards here.
Finally, as Vice Chair of COST Action European Cleft and Craniofacial Initiative for Equality in Care (ECCE) he updated the congress on the progress of this project which is assessing access to cleft care across the Action’s 26 countries in Europe and will make recommendations for future ways of ensuring equal access for all. You can read more about this on the Action’s website http://ecce.nu/
The external evaluator of the developed CET training material
Dr Alex Clarke is a consultant clinical and health psychologist, specialising in plastic and reconstructive surgery She set up and led a small group of psychologists working in plastic surgery at the Royal Free Hospital in London in 2005, retiring from clinical work in 2014. Since then, she has concentrated on research and teaching as a visiting professor at the Centre for Appearance Research at the University of the West of England in Bristol. She was awarded an honorary doctorate for this work in 2015.
Her research has focussed on the management of disfiguring conditions including co-supervision of a doctoral programme developing an online intervention for disfiguring conditions and the development of resources for facilitating decision making in breast reconstruction. As part of the Appearance Research Collaboration based in the Centre for Appearance Research, she led the intervention strand of a large multi-centre study of factors predicting adjustment to disfiguring conditions. This resulted in a multi-authored book for clinicians published at the end of 2013: Clarke et al: CBT for appearance anxiety: psychosocial interventions for anxiety due to visible difference. This recent text is the latest of over 100 peer reviewed publications and resources for patients.
As an honorary professor of psychology at University College London she co-led a course in health psychology for postgraduate students and provided input to a number of studies. This included the evaluation of the effectiveness of multidisciplinary team meetings.
Current research interests focus on the development and evaluation of brief assessment tools for surgeons working in private cosmetic surgery settings and the training and resourcing of clinicians in recognising psychological vulnerability across different plastic surgery settings.
Meeting in Bulgaria
The fourth meeting took place at Associatcia licevi anomalii, Plovdiv, Bulgaria on the 5th of April, 2019. The main focus of the meeting was to feedback how the pilot testing of the developed training material proceeded at the different partners' institutes. The overall feedback was very positive, and the pre and post-tests showed improvement in knowledge of those that participated in the training course.
Training School Malta – Cost Action 16234
The training school, organized by the Cost Action ECCE project took place in Malta 25 - 27 March, with over 50 participants attending from various backgrounds in healthcare professions. The focus of the training school was on the patient perspective of care in cleft and craniofacial conditions. During the training school, Gareth Davies from ECO ran a workshop on parent and patient needs and expectations. In particular, he focused on what health professionals need to know about how having a child with a cleft can impact on everyday family life. The importance of realistic expectations of surgery, which is at the forefront of the CET project, was stressed in many contexts. The workshop was very well received by health professionals from all over Europe, with a request that a similar workshop should be organized at the main cleft and craniofacial centre in Barcelona, Spain, in the autumn.
ERN CRANIO meeting in Uppsala 9 – 10 November 2018
Health Professionals, researchers and patient representatives gathered in Uppsala, Sweden on 9-10 November 2018 for the 3rd ERN CRANIO meeting. The meeting was opened by the CEO of Uppsala University Hospital, Mr. Eric Wahlberg, and began with a morning of educational sessions on the topic of psychology. The conference was honoured to have Dr. Lisa Ekselius, Dr. Fotis Papadopoulos and Dr. Karin Tillman from Uppsala University Hospital present their work on neurocognitive and neuropsychiatric outcomes in craniofacial malformations. Karin Tillman and colleagues have since published one of the papers presented at the meeting, titled‘Increased Risk for Neurodevelopmental Disorders in Children with Orofacial Clefts’.Dr. Jolanda Okkerse from Erasmus MC Rotterdam presented on Post Traumatic Stress in parents and patients following craniofacial surgery and Dr. Louise Dalton from John Radcliffe Hospital, Oxford presented on Clinical Psychology and Craniofacial care: Priorities and models of delivery. This session was extremely informative and highlighted the psychological impact craniofacial anomalies/ENT disorders can have on individuals and the importance of making effective psychological care available for these patient groups.
Friday afternoon began with an update on key network activities by the ERN CRANIO coordinator (Dr Irene Mathijssen). Topics discussed included the upcoming call for new members to join the ERN, expected to be launched in April 2019 and the impact of Brexit on the ERNs. On behalf of the patient support groups, Gareth Davies introduced the patient representatives for ERN CRANIO and their view on patient involvement within the network. Ulrich Thomale from Charité Berlin outlined how to use the Clinical Patient Management System (CPMS). All CRANIO members can use this online platform to discuss complex patient cases with their colleagues. The group of neurosurgeons is already actively using the CPMS, and all others are invited to register as well.
Meeting in Romania
The third meeting took place in Bucharest 11 - 12 October 2018. At this meeting, the developed curriculum was presented to the partners by Triskelion and HKR. The training followed the concept of "train the trainer" which induced the developed modules together with clinical case studies. Fruitfull discussion about the curriculum took place, and that resulted in some minor adjustments to the material. Overall, everyone agreed that the material is excellent, and plans for the pilot implementation was decided.
Vocational schools in Istanbul
Thomas Nilsen from Triskelion had a study visit to some of the Vocational schools in Istanbul in early may, at the invitation of Mr Mustafa Demirer, principal of Esenler School, where he gave a presentation about several European projects, many that focusing on appearance and body image issues, including the CET project to principals and school health staff. The School Health Unit that consists of a doctor and two nurses provides preventive health, treatment and polyclinic services for students and faculty. The Turkish staff expressed high interest in the types of training CET project will provide for healthcare professionals since their target group is often found in the schools that they are serving.
Appearance Matters 8 Conference
The conference took place in Bath, the United Kingdom between 12 - 14 June 2018 and dissemination about our project was included in the conference package.
European Parliament meeting: Brussels 27 February 2018
MEP Kelly, the Ireland South MEP and Leader of the Fine Gael delegation in the European Parliament hosted the gathering with fellow MEPs and experts to raise awareness of the issues and call for positive action to prevent inequality.“This is a forum to highlight inequality in access to care, and a compelling example of this is one relatively common birth defect, cleft lip and palate. The workshop will also be used as a forum to discuss and propose solutions in the context of research,” said Kelly.
In addition to a significant contribution and presentation from ECO, there were keynote addresses by Dr Martin Persson from Högskolan Kristianstad(University of Kristianstad) in Sweden and Prof Peter Mossey of the University of Dundee in Scotland. Dr Persson has worked extensively with the psychological and social determinants surrounding craniofacial anomalies and is currently the Chair of the COST Action 16234 - European Cleft and Craniofacial Initiative for Equality in Care. Prof Mossey is a Professor of Craniofacial Development and has a long track record of research on craniofacial anomalies in Europe, and also in the developing world, and as VP for the Global Oral Health Inequalities Research Network is well equipped to contribute to addressing the inequalities agenda in Europe.
The speakers explained how one in 700 births will have a cleft lip and/or palate, the most common birth defect affecting the head and face region. Estimates indicate there are over 900,000 individuals living with clefts in Europe, burdened by a complex treatment pathway from birth to adulthood, and affecting the patients and their families both physically and psychosocially throughout life.
The workshop outlined the medical, social and psychological problems of those born with facial clefts plus the inequalities in access to care depending on the country of birth. Interventions and education that transforms lives for the benefit of the individuals, their families and society were also explored. MEPs present called on the European Commission to take action to effect change in this regard.
The American Cleft Palate–Craniofacial Association
Martin Persson attended the 75th annual meeting of The American Cleft Palate–Craniofacial Association that had about 800 participants from 23 countries. At the conference, Martin presented a one-hour presentation about the European project IHEM - How Healthcare Professionals Can Receive Training In How To Conduct An Initial Screening bout The Educational Outcomes In Individuals With A Cleft. Via the significant amount of networking during the conference, our project "Cutting Edge Training" gained a considerable amount of interest.
Meeting in Bergen, Norway
The second meeting took place in Bergen, Norway on the 16th of February, 2018. At the meeting, the partners (Clinical Emergency Hospital for Children “Maria Sklodowska Curie, Associatcia licevi anomalii, Ars Chirurgica S.r.l, and Haukeland University Hospital) that conducted the national analysis and survey of healthcare professionals (HCP) presented their results:
- In total 66 HCP were interviewed and there were no differences in the responses overall.
- All believed that their patients are affected by psychosocial issues
- How the HCP addressed those issues varied to some degree, but no difference between the countries.
- All HCP agreed that training in how to handle the psychosocial aspects is much needed.
- HCP suggested that a training package should include: a) Practical information based upon evidence-based research that can be easily implemented (Not too much theoretical texts). b) Case studies
ECO presented their report about the patients’ perspective of those that undergo appearance altering procedures and highlighted their findings in relation to their experiences as a patient organisation dealing with this particular topic.
Triskelion presented the required psychosocially support patients undergoing appearance altering procedures that result in scarring and body form changes such as cancer, burns, limb loss, mastectomy, plastic surgery and birth defects should be able to receive. Based upon this a proposed model was presented on which components could be included in a training package.
HKR presented the pedagogical approach in how to design a training curriculum in relation to the European Qualification Framework in combination with the latest research on educational training for healthcare professionals. These aspects were discussed in relation to the current public health focus, especially concerning task shifting.
School of Dental Medicine - Zagreb, Croatia
An introductory lecture was given about the Cutting Edge Training project, which included the psychosocial aspects for patients undergoing appearance altering procedures, for healthcare professionals in Zagreb.
CET training in Thailand
The background of the Cutting Edge Training project was part of comprehensive training for healthcare professionals at Srinagarind Hospital, Faculty of Medicine, Khon Kaen University and very well received.
CET in the media
The CET kickoff meeting was held in Kristianstad, Sweden on the 13th of November 2017. The partners introduced themselves and gave a brief background about themselves and their organization. Martin Persson presented an overall project overview of the specific objectives together with key deliverables. In a collaborative way, the partners agreed upon the specific objectives that need to be achieved until the next meeting. Then an overview of the management and quality assurance aspects, which included the following: a) Cooperation agreement b) Time reporting c) Financial rules. The meeting ended with a general discussion about the project and deciding the dates and venues for the next two meetings.