New Journal Article: Piloting Patient Reported Outcome Measures in Cleft Lip and Palate Services in Aotearoa New Zealand

This research study, conducted as part of my recently-completed PhD programme of studies, and supervised by Dr Phoebe Macrae, Dr Nicola Stock, and Tika Ormond involved inviting patients aged 12 and over in New Zealand’s five cleft teams to complete the CLEFT-Q Patient Reported Outcome Measure in 2023-24. This is a series of standardised measures used in cleft lip and palate care and research around the world and allowed us to compare patient-reported outcomes in New Zealand with global averages.

Understanding, and routinely using, patient-reported outcome measures (PROMs) is an important part of cleft and craniofacial care as it ensures that treatment goals and priorities are aligned with patient priorities rather than being solely clinician-led. PROMs are a useful tool in shared decision making. Although some PROMs have been developed and used in New Zealand cleft care, to date, none have been standardised and scientifically validated. Using a standardised and validated PROM is important to ensure that the PROM is accurately measuring what it seeks to measure, as well as allowing for comparison to other groups and cohorts. PROMs also can be an effective tool for tracking change over time in the same patient (e.g. administering a PROM such as the CLEFT-Q pre, and post-treatment).

In addition to having cleft teams administer the CLEFT-Q, in 2024, the study evaluated the perspectives of cleft team staff who had been involved in the administration of the PROMs pilot to understand the facilitators and barriers to PROM use within New Zealand cleft services.

The study found that patient-reported speech outcomes were either on par with or exceeding CLEFT-Q norms. Similarly social function was equivalent to the norms, while school function exceeded the norms indicating positive school experiences for people with cleft in Aotearoa New Zealand. However, psychological outcomes were significantly poorer in NZ compared to norms. This was especially true for those aged 18 and over, as well as for girls and women. These gender differences in psychological satisfaction are noted in New Zealand in non-cleft studies also, therefore the intersection of having a cleft, and being an adult and/or female warrant attention. The study adds to the growing evidence domestically and internationally that psychological services are a crucial part of cleft care services.

The interviews with clinicians also reflected this finding. In addition, clinician interviews highlighted that while all those clinicians who were involved with the study supported and saw the benefits of patient-reported outcome measures, this attitude was not universally shared within cleft teams. The study also highlighted the need for all cleft teams to have Cleft Team Coordinator positions, and for these positions to be adequately supported with administrative support staff who can help with tasks such as the administration and interpretation of PROMs. Disjointed and dated IT infrastructure was also identified as a notable barrier to routine implementation of PROMs; by contrast, effective and automated IT infrastructure can make administration of PROMs simple and enhance patient-centred care. Additional recommendations for clinical practice and policy, and for future research are presented within the article. We hope that this study has demonstrated the value of routine implementation of validated, standardised PROMs as standard practice within cleft care in NZ and around the world.

Thank you to all the young people and adults with cleft, and clinicians who participated in this study. Special thanks to the Coordinating Investigators at each cleft team for your logistical support of this study, we couldn’t have done this valuable work without you. Thank you to the Child Well-being Research Institute for financial support of this project. Their grant allowed for a tablet hardware purchase and facilitated travel to meet with cleft team clinicians during the study. A full list of acknowledgements are presented within the article.

This article is available open access (free of charge). Read the article here.