Satisfaction with Cleft-specific Outcomes: A Longitudinal Analysis
Alexandra O. Luby, MS, Kavitha Ranganathan, MD, Michaella Baker, BS, Anne Patterson, NIki Matusko, BS, Katelyn Bennett, MD, Steven R. Buchman, MD, Jennifer F. Waljee, MD, MS, MPH.
University of Michigan, Ann Arbor, MI, USA.
PURPOSE: While children with cleft lip and/or palate (CLCP) undergo numerous procedures during their childhood, changes in patient-reported outcomes with regards to satisfaction with cleft-specific outcomes over time remain unclear and understudied. Understanding how patient perceptions change over time can impact the need for operative and non-operative interventions and afford providers a more astute approach to caring for young children, early adolescents, and young adults. The purpose of this study was to define patient-reported outcomes including satisfaction with cleft-specific aspects of appearance and function among children with clefts in a longitudinal fashion over four years.
METHODS: We surveyed children with CLCP (n=175) who were older than five years old annually from 2014 to 2018. Revision questionnaire, Cleft Evaluation Profile (CEP), and Satisfaction With Appearance questionnaire (SWAP) were among the survey tools utilized in this study. Revision questionnaire included desired timeframe for revision, desired area for improvement (lips, nose, cheek bone, dentition, or palate), and reason for desired revision. CEP is a validated metric of satisfaction with cleft-specific outcomes. SWAP is a measure of satisfaction with overall and specific aspects of appearance and social interactions, where a higher score represents a better healthcare related quality of life (HRQOL). This differs from CEP, where a higher score indicates a poorer HRQOL. Factor analysis and Cronbach's alpha were used to assess CEP and SWAP uni-dimensionality and internal consistency. Linear mixed modeling was used to ascertain the relationship between CEP and SWAP scores with desire for revision over time, while adjusting for sociodemographic factors.
RESULTS: Of the 175 patients sampled, 57.7% (n=101) desired revision at time 1, where the average age was 10.0 (SD=3.2) years. Among these patients, 47.5% desired revision to the nose, 47.5% to dentition, and 29.7% to lips. 44.6% of patients desired revision to improve their appearance. Of the 74 patients who did not desire revision at time 1, 50.0% (n=37) subsequently desired revision at a later time point. Desire for revision was significantly associated with each unit decrease in CEP (OR=0.392; p=0.000). Desire for revision was also significantly associated with certain grouped aspects of SWAP, including satisfaction with overall and facial appearance (OR=0.474; p=0.000) and satisfaction with social interactions (OR=0.718; p=0.002). Initial diagnosis impacted desire for revision, as patients with cleft lip and palate have greater odds of desiring revision compared to those with an isolated cleft lip (OR=2.48; p=0.037).
CONCLUSION: Satisfaction with cleft-specific aspects of appearance and function change over time. Both CEP and SWAP are significantly associated with desire for revision and can be utilized to monitor how pediatric patient perceptions evolve as they mature. Understanding that patient-reported outcomes change in this manner over time has the potential to influence the time course of cleft revision surgery and other interventions targeted towards altering the appearance and function of children with clefts at specific time points in development.
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