Wanted: Paediatric Specialist!
ERN eUROGEN needs a paediatric expert to publish and develop adult and childhood/youth versions of the ICF Incontinence Assessment Form.
Dr. med. Eberhard Schmiedeke, from the Kinderchirurgie team at Klinikum Bremen-Mitte (DE), writes:
“For a long time, we have been struggling to find appropriate scales for assessing urorectal function and quality of life in our paediatric anorectal malformation (ARM) patients.
The International Classification of Functioning, Disability and Health (ICF) offers an interesting alternative to the plethora of existing and emerging scales. It was introduced in 2001 by the World Health Organisation (WHO) to complement the International Statistical Classification of Diseases and Related Health Problems (ICD) and classifies the most important anatomical structures and functions, environmental and personal factors, and patients’ activities/participation. As such, the ICF includes more than 1,400 different categories. It has been modified for different stages of childhood (0-2, 3-6, 7-12,13-17) as the Child/Youth-ICF (ICF-CY).
Core Sets have the items relevant to a specific disease (e.g., diabetes, brain injury, obesity, inflammatory bowel disease). There are 34 Core Sets, each no longer than two pages in print and with authorised translations in 94 languages. The development process is clearly defined and includes the perspectives of patients and different healthcare professionals (nurses, physiotherapists, psychologists, doctors, etc.) from countries with different socio-economic levels. The Core Sets enable specification of patients’ therapy needs and uniform outcome measurement. This is useful for research and negotiations with payers; in some countries (e.g., Germany), it is even part of the social legislation (§ 92 SGB V).
In 2019, Prof Barbara Köhler, Winterthur (CH), began developing a Core Set for the assessment of urinary and faecal incontinence: the ICF Incontinence Assessment Form (ICF-IAF). However, because Prof. Köhler switched to private practice, she did not complete the ICF-IAF’s publication. A further four weeks of work need to be completed (and financed, costing €20,000), and it is unclear when she will be able to find the time for this.
Therefore, ERN eUROGEN needs an expert (e.g., a physiotherapist, psychologist, or physician) to assist in publishing this adult form and then take responsibility for and guide the development of a childhood/youth version (e.g., as a PhD-thesis).
There are good chances for a successful application for funding because of the ICF’s highly official, politically required character, and academic merits will be rightfully earned.”
If you are interested in being involved in this project, please contact the ERN Coordination Team.
