In January 2017, Erasmus MC began adapting its care pathways to match the International Consortium for Health Outcomes Measurement (ICHOM) standard set for all cleft palate patients , following a successful trial in 2016.
In January 2017, Erasmus MC began adapting its care pathways to match the International Consortium for Health Outcomes Measurement (ICHOM) standard set for all cleft palate patients , following a successful trial in 2016. The ICHOM standards measure outcomes including oral health, appearance and psychosocial functioning, to personalise and improve the care given to children born with this condition.
The process of implementing the standards in Erasmus MC began with the formation of a multi-disciplinary team of surgeons, dentists, a language therapist and a nurse, supported by experts in other fields, including a psychologist and a paediatrician. Working with the IT team, an online system was set up, allowing patients to record their symptoms.
The trial involved 20 patients who reported their symptoms every two weeks, from January to August 2016. Overall, the patients transmitted 90 per cent of the reviews required; the 10 per cent failure rate was related to technical issues such as lack of an email address or mistakes in spelling. In addition to the patient surveys, clinical and administrative metrics were collected at the medical centre.
Following the successful trial, ICHOM standards are now being applied to the treatment of all cleft palate patients in the Erasmus Medical Centre and the centre is also working with the Dutch Association for Cleft and Craniofacial Anomalies to implement the standards in all the hospitals in the Netherlands.
According to the ICHOM report, cleft lip and palate affects 1 in 700 newborns and can result in problems with appearance, eating, hearing, speech, oral health, and psychological and social development. Patients usually require multiple interventions, re-interventions, and maintenance treatment over a prolonged period of time and it is hoped that improving the efficiency of treatment will reduce the cost of care.
From the report:
Patients have provided very positive feedback about the initiative. “This really helps us prepare for the clinic ourselves by encouraging us to think about our upcoming appointment in a structured way. We’re so used to just turning up, but this gives us more of a role that makes the appointment more tailored to what is important to us.” reported one patient. The patient-reported outcomes element has provided an opportunity for patients to engage in their consultation in advance, tailoring it to their needs.
Clinicians have also seen many benefits. “When we know what is bothering the patient most, it helps us better structure our consultations. Everything becomes far more focussed when both patients and clinicians are better prepared,” said Maarten Koudstaal. But the impact has not been limited to the consultation itself. “It is helping us think more broadly about the care we are providing. How important is the psychosocial element of the condition to this patient? Which part? What are we doing about that? This is such a multi-faceted condition that affects multiple aspects of a patient’s life, and this new approach is really helping us question how many of these facets we are really tackling. Importantly, it tells us what is bothering the patient rather than what is important to the clinician. These two can often be very different, and through this initiative, we are really starting to see this and do something about it.”
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