Almutairi, Ashwaq; (2025) The Development and Validation of a Medication Related Osteonecrosis of the Jaws-Specific Patient Reported Outcome Measure (DOMINO). Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Medication-related osteonecrosis of the jaws (MRONJ) is a significant adverse effect of the bone modifying agents utilized in various medical fields, including oncology, endocrinology, nephrology, orthopaedics, and haematology. This condition is characterised by the presence of necrotic bone within the maxillofacial region, often associated with pain and infection. Patient-reported outcome measure (PROM), a validated instrument that captures individuals' perception of their health through a structured questionnaire, is used to assess oral health related quality of life (OHRQoL). Given the considerable morbidity associated with MRONJ, the use of PROM is critical in the assessment of treatment efficacy. Following the COSMIN (Consensus based Standards for the selection of health status Measurement INstruments) methodology, a literature review was performed, revealing low evidence for the content validity of existing MRONJ instruments. The objective of this project was to develop a valid and reliable MRONJ-specific patient reported outcome measure for use in clinical trials and practice. The present thesis addresses the preliminary stages and groundwork necessary for the development of the instrument. A literature review and a first round of modified Delphi in the form of self-rated questionnaires were employed in collaboration with nine experts to create a topic guide for a qualitative study. Subsequently, a qualitative study in the form of focus groups was conducted with 15 MRONJ patients to explore the impact of MRONJ on their daily lives. The arising results helped generate the items of the questionnaire. A second round of modified Delphi involving nine healthcare providers along with a series of cognitive interviews with seven patients was carried out to evaluate the suitability, relevance and comprehensibility of the suggested items. The newly developed questionnaire consisted of 17 items and was structured in alignment with Locker’s conceptual framework for measuring oral health. It included five items under the scale ‘pain and discomfort’, four items under the scale ‘functional limitation’ and eight items under the scale 'disability and psychological discomfort’. Each item is scored using a four-point Likert scale, and the overall score is calculated by summing the scores of each item with a higher score representing worse OHRQOL. While this thesis presents the foundational work in the development of this MRONJ-specific PROM, it should be noted that full psychometric validation—encompassing test-retest reliability, construct validity, and responsiveness—remains the subject of future research.

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