Cleft Lip and Palate Care in the United Kingdom—The Clinical Standards Advisory Group (CSAG) Study. Part 2: Dentofacial Outcomes and Patient Satisfaction

Abstract

A rigorous evaluation of cleft care in the United Kingdom reveals disappointing outcomes.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

“…Several studies have used the CEP [5,6,7,8,9,10] and overall comparisons indicate very similar results, and are also in line with the more recent Cleft Care UK study [19]. Most parents in the present study (88.7%) had scores indicating they were satisfied with treatment and their child's appearance, compared to 75% in Noor and Musa's study [8].…”

“…The 8 item scale was used to assess parents' perceived satisfaction with features associated with cleft and its treatment, namely speech, hearing, lip, nose, teeth, bite, breathing, and profile. Respondents are asked to rate their satisfaction on a 7-point Likert scale, ranging from very satisfactory (1) to very unsatisfactory (7). A total mean score of parent satisfaction was computed (mean score for each item divided by the number of items).…”

“…A range of studies have explored this issue as assessed by professionals, lay-persons, patients and parents [5,6,7,8,9,10,11]. Studies comparing parent, patients, and professionals' satisfaction with cleft-related features report contradictory findings (for a review, see [10,12]), which may partly be explained by different methodological approaches, in addition to a significant diversity in the choice of concepts and outcome measures [13].…”

An Evaluation of Health-Related Quality of Life (HRQoL) in a Group of 4–7 Year-old Children with Cleft Lip and Palate

“…Interessanterweise wurden im Vergleich mit der Normstichprobe höhere HRQoL-Werte im "Selbstwert" bei Kindern mit LKGS-Spalten festgestellt, was gegebenenfalls mit der er- aspect of a child's life -it may be lasting and deep. There have been various studies focussing on many aspects of unilateral CLP, such as the Eurocleft Projects [32,33] which touched on areas such as patient and parent satisfaction [46], but their primary focus was on surgical, speech, occlusal and esthetic outcomes. The impact of cure on CLP children's HRQoL has just recently attracted the attention of researchers.…”

“…Die aufwendige und sich über einen langen Zeitraum erstreckende Behandlung und die mög-lichen psychosozialen Belastungen durch die Spaltbildung beeinflussen fast jeden Lebensbereich des Kindes und haben unter Umständen einen bleibenden und prägenden Einfluss. Verschiedene Studien wie die Eurocleft-Projekte [32,33] haben sich auf zahlreiche Aspekte von unilateralen LKGS-Spalten konzentriert, die ebenfalls Bereiche wie Patienten-und Elternzufriedenheit [46] untersucht haben. Ihr Augenmerk richtete sich jedoch auf Ergebnisse aus den Bereichen Chirurgie, Sprachbildung, Okklusion und Ästhetik.…”