Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate at Age 8+ Years

Abstract

Background: Consensus regarding optimal outcome measurement has been identified as one of the most important, yet most challenging developments for the future of cleft lip and/or palate (CL/P) services. In 2011, a process began to adopt a shared conceptual framework and to identify a set of core outcome measures for the comprehensive assessment of psychological adjustment. Objectives: The aim of the current article is to outline the collaborative process used to achieve consensus in the academic and clinical measurement of psychological adjustment to CL/P from the age of 8 years onward. Results: A conceptual framework and corresponding parent- and self-reported outcome measures for use at ages 8, 10, 12, 15, 18, 20, and 25 years have been agreed upon by clinicians, researchers, and patient and parent representatives. All measures have been evaluated according to their psychometric properties, clinical utility, ability to produce meaningful longitudinal data, and a range of pragmatic considerations. Conclusions: Although the collaborative process has been challenging and has required ongoing dedication from multiple stakeholders, consistency in data collection over time will allow for key research questions in CL/P to be addressed, both in the United Kingdom (UK) and internationally. The process has also demonstrated the clinical utility of the measures and the potential for the gradual integration of the measures into clinical practice. UK progress has sparked global interest, and the adaptation of the framework and its corresponding measures for worldwide use is now a prominent focus.

Comparison of Corresponding Scores From the Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q in Swedish Patients With Cleft Lip and/or Palate

“…Clinicians will have to consider the strengths and limitations in relation to both questionnaires as well as the resources of the hospital system when choosing to implement either PROM. Collaboration between clinicians and researchers has earlier been suggested for implementation of PROMs with both “face validity and scientific rigor” ( Stock et al, 2020 ). Both PROMs have the potential to allow CL/P teams to enhance patient–clinician communication ( Wormald & Rodrigues, 2018 ) and shared decision-making between patients and clinicians ( Dobbs et al, 2019 ).…”

“…Therefore, they would have to be used in combination to represent a holistic assessment of HRQOL in patients with CL/P. A list of proposed PROMs for research and clinical work regarding psychological adjustment, as well as satisfaction with appearance, can be found in a publication by Stock et al (2020) . This work was published for the Global Task Force for Holistic Outcomes, an initiative of the American Cleft Palate-Craniofacial Association.…”

Psychosocial and Sexual Implications of Repaired Cleft Lip in an Adult Male

“…A team of physicians and experts, utilizing a coordinated approach as noted in Table 3 , is essential to care for children who have CLP [ 16 ]. Longitudinal studies have looked at psychological adjustment to CLP to determine clinical utility [ 17 ]. In addition, prenatal diagnosis facilitates timely counseling of the parents by the CLP team and increases preparedness for the family which improves the child’s quality of treatment enabling a quality and standard of life as close to the norm as possible [ 18 ].…”

Response to Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate at Age 8+ Years

“…We read with interest this issue’s article by ( Stock et al, 2020 ), which reviewed patient-reported measures for psychological adjustment to cleft lip and/or palate in people aged 8 years or older. The authors aimed to appraise available measures, before recommending a core set, presumably for use in both research and clinical practice.…”