Improving care for cleft lip and palate patients: uniform and patient-orientated outcome measures

Abstract

The quality of care for patients with cleft lip and palate is extremely variable across the world. Treatment protocols differ and methods of data registration are not uniform. Improving this care by means of comparative research is challenging. The best treatment programmes can be identified by uniformly registering patient-orientated outcomes and comparing the outcomes with those of other treatment centres. That knowledge can be used to improve one's own care. An international team consisting of specialists and cleft lip and palate patients has developed a set of outcome measures that are considered by patients to be most important. This team is coordinated by the International Consortium of Health Outcomes Measurement (ICHOM). The cleft lip and palate outcome set can be used by all centres worldwide in following up on cleft lip and palate patients. In the Erasmus Medical Centre in Rotterdam, the 'Zorgmonitor Schisis' (Care Monitor Cleft Lip and Palate) has been built, an application in which these outcome measures are collected at fixed times. Implementing this set of outcome measures in other cleft lip and palate treatment centres and using the outcomes as (inter)national benchmarks will result in transparency and the improvement of the treatment of cleft lip and palate worldwide.

Speech Outcomes after Delayed Hard Palate Closure and Synchronous Secondary Alveolar Bone Grafting in Patients with Cleft Lip, Alveolus and Palate

“…We have implemented a patient-reported set of outcome measurements, which includes patients' perspective of speech and psychosocial health throughout the treatment trajectory until their discharge from follow-up at the age of 22. 36 37 These data should give us more insight on the long-term patient-reported speech outcomes after DHPC.…”

Bridging the gap: Can International Consortium of Health Outcomes Measurement standard sets align outcomes accepted for regulatory and health technology assessment decision‐making of oncology medicines

“…[6][7][8][9][10] Although different perspectives to the relevance of outcomes may be due to the different remits of regulatory bodies and HTA agencies, some alignment in the use of those outcomes may promote more consistent and timely access to valuable innovative medicines. [10][11][12][13] Since ICHOM claims to include health outcomes that matter most to patients and has involved patient representatives to develop standard sets, [14][15][16] it may be an initiative, which could support this further alignment. Therefore, we aimed to assess the extent to which the outcomes used by regulatory bodies and HTA agencies are patient-relevant by comparing these outcomes to those defined by ICHOM.…”