Long term follow up study of survival associated with cleft lip and palate at birth

Abstract

Objective To assess the overall and cause specific mortality of people from birth to 55 years with cleft lip and palate. Design Long term follow up study. Setting Danish register of deaths. Participants People born with cleft lip and palate between 1943 and 1987, followed to 1998. Main outcome measures Observed and expected numbers of deaths, summarised as overall and cause specific standardised mortality ratios. Results 5331 people with cleft lip and palate were followed for 170 421 person years. The expected number of deaths was 259, but 402 occurred, corresponding to a standardised mortality ratio of 1.4 (95% confidence interval 1.3 to 1.6) for males and 1.8 (1.5 to 2.1) for females. The increased risk of mortality was nearly constant for the three intervals at follow up: first year of life, 1-17 years, and 18-55 years. The participants had an increased risk of all major causes of death. Conclusions People with cleft lip and palate have increased mortality up to age 55. Children born with cleft lip and palate and possibly other congenital malformations may benefit from specific preventive health measures into and throughout adulthood.

Health Professionals’ Assessment of Health-Related Quality of Life Values for Oral Clefting by Age Using a Visual Analogue Scale Method

“…No studies have reported the impact of clefting on the quality of life of infants. Survival in association with clefting has also been assessed, and recent work suggests that there may be an overall increase in mortality from all causes, with suicide as a single significant contributor; this is consistent with concerns about psychological adjustment (Christensen et al, 2004).These findings indicate that there may be a relative burden of oral clefting on the overall quality of life across all age groups. However, no previous studies have attempted to directly measure preferences related to oral clefting as a health state and to provide HRQL scores that could be used in evaluating the effectiveness and cost effectiveness of health interventions and prevention programs aimed at clefting.…”

“…No studies have reported the impact of clefting on the quality of life of infants. Survival in association with clefting has also been assessed, and recent work suggests that there may be an overall increase in mortality from all causes, with suicide as a single significant contributor; this is consistent with concerns about psychological adjustment (Christensen et al, 2004).…”

“…It is critical to have accurate outcome measures available, as both quantitative and qualitative measures to assess changes are still needed to optimize the outcomes of those born with craniofacial anomalies. In addition, because it is increasingly recognized that clefting may be a condition with lifelong health implications (Christensen et al, 2004), ongoing performance measures, including HRQL, will also be required. Visual analogue scale used to obtain HRQL values for oral clefting by age.…”

Analysis of familial incidence of non-syndromic cleft lip and palate in a Brazilian population

“…A recent work suggested that there has been a gross underestimation of the consequences of being born with CL/P (1). Individuals born with CL/P have a shorter lifespan, with increased risk for all major causes of death, when compared with individuals born without clefts (5). Contributing to these higher mortality rates are probably psychiatric disorders and cancer.…”

Type of Oral Cleft and Mothers’ Perceptions of Care, Health Status, and Outcomes for Preadolescent Children

“…Children with nonsyndromic clefts are at increased risk for mild delays in some developmental areas (Nopoulos et al, 2002(Nopoulos et al, , 2005 and learning disabilities (Broder et al, 1998). They also have a lifetime risk for increased mortality across all causes, with suicide as a specific risk (Christensen et al, 2004).…”