There's more to life than perfect plosives: Assessing the psycho-social impact of late intervention for cleft lip/palate using an adapted scale of the Therapy Outcome Measure (TOM)

Abstract Objective: To ascertain whether late intervention for CLP is associated with beneficial psychosocial changes and whether these can be identified and measured reliably in clinical practice. Method: This research explores the lived experiences of older individuals with CLP in India and investigates the barriers which prevent them from accessing care. It uses framework analysis to evaluate semi-structured interviews and examines how an adapted version of the TOM, the TOM-clp, can be used to demonstrate both physiological and psychosocial change for individuals undergoing intervention later in life. Results: The TOM-clp showed excellent inter-rater reliability after only a short training session and was quick and easy to implement in a clinical setting. It proved culturally, age and gender sensitive and could be delivered in multiple language settings with neither financial implications nor additional demand on local resources. Framework analysis and TOM-clp data indicated positive change in all domains following late intervention and revealed the importance that secondary surgery, dental care and orthodontic intervention played in enhancing the lives of these participants. Barriers to treatment included superstition and lack of awareness about CLP, which echoed those already highlighted in the literature. Discussion with service providers indicated that auditing and benchmarking could have a key role in improving quality of care at a wider level. Conclusions: The TOM-clp shows promise as an outcome measure to demonstrate that late intervention for CLP leads to an improved quality of life, irrespective of the limited change in perceptual speech described in the literature. Discussions also suggest that barriers to intervention need to be overcome and treatment options for CLP in older patients should be extended to include the provision of secondary care in line with international standards for treatment of CLP.