Ouders die een kind krijgen met een aangeboren afwijking zoals een schisis hebben verschillende redenen om zich zorgen te maken over de toekomst van hun kind. De ervaring leert, dat deze zorg van ouders meestal direct bij het (al dan niet prenataal) stellen van de diagnose schisis ontstaat, en daarna op verschillende momenten in de ontwikkeling van het kind aanwezig is. In de klinische praktijk blijkt dat er bij ouders sprake kan zijn van acceptatieproblematiek, rouw en zorgen om zaken als de sociale acceptatie van het kind in de toekomst. Het verloop van de begeleiding aan ouders (en kind) ten aanzien van het psychosociaal welbevinden en de opvoeding is complex en spant zich uit over verschillende periodes in de ontwikkeling van het kind van baby tot (jong) volwassene. Hoewel veel van de primaire behandeling medisch/chirurgisch van aard is, is het uiteindelijke doel van de totale behandeling van een schisisteam het psychosociaal welbevinden van het kind met een schisis en zijn of haar familie. Het is daarom wenselijk om in kaart te brengen of en wanneer ouders en kind gebaat zouden zijn bij psychosociale ondersteuning en, zo ja, op welke momenten in de ontwikkeling van het kind dit het beste kan plaats vinden.

Description of studies

Psychosocial interventions

One study, a systematic review, was included in this literature summary. Norman, 2014 aimed to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. Six databases (including Medline and Embase) were searched until June 2013. Studies were included if at least 90% of participants had cleft lip/palate (or parents of children with cleft lip/palate), unless results were reported separately for patients with cleft lip and/or palate or raw data were available upon request from authors. A total of 7 studies were included in this review.

Psychosocial development

For this literature summary the conclusions of systematic review by Hunt, 2005_1 was considered as a fundament. The conclusions from the review were supplemented by the 24 studies published after the systematic literature search of this review was performed (December 2003). No GRADE-assessment was performed of these studies and no literature conclusions were formulated, since the study designs was not suitable for this. However, the studies are described narratively in the paragraphs below.

Hunt, 2005 is a systematic review examining the psychosocial impact of cleft lip and palate among children and adults. The following specific research questions were assessed: 1) are children and adults with cleft lip and palate at increased risk of impaired psychosocial functioning? 2) What, if any, type of psychosocial impairement do children and adults with cleft lip and palate develop? 3) Is there a relationship between cleft type and the prevalence and severity of psychosocial impairement? 4) Are children with cleft lip and palate more vulnerable to psychosocial problems at particular stages of developement? In this review a systematic seach was performed up to december 2003 and found 64 papers that met the inclusion criteria, that were prospective, retrospective or cross-sectional in nature. Only 30 of the included studies had a control group.

Baker, 2008 is a cross-sectional study that examined the role of parent’s coping strategies and social support in the family impact of cleft lip and palate and levels of adjustment. A total of 103 parents of children and young adults with cleft lip and palate (age 0 – 18 years) participated in this study, by filling out a Coping Response Inventory, the Interpersonal Support Evaluation List – Short Form, the Stress-related Growth Scale, the Family Impact Scale and the General Health Questionnaire.

Berger, 2009 is a cross-sectional study exploring the nature of psychosocial adjustment in youg peaople with a cleft and their parents. A total of 145 participants aged 11 – 16 years and their families were included in this study. Participants completed measures of psychological adjustment, coping, social experiences, satisfaction with appearence, cleft-related factors and demographic information.

Brand, 2008 is a cross-sectional assessed psychological functioning and interactional competencies and sleep patterns in children with cleft lip and palate. A total of 32 children with cleft lip and palate and 34 controls aged 6-16 years old were included in this study. For psychosocial assessment the Strength and Difficulties Questionnaire and a questionnaire on interactional competencies was used. For sleep assessment a sleep log was completed for seven consecutive nights.

Collett, 2012 is a cross-sectional study that aimed to determine whether psychosocial functioning in children with orofacial clefts and their parents differs from unaffected controls. A total of 93 participants with orofacial clefts and 124 controls aged 5-9 years were included in this study. Psychosocial functioning was measured by the Child Behaviour Checklist, the PedsQL 4.0, the Social Competence Scale and the Parenting Stress Inventory.

Demir, 2011 is a cross-sectional study aiming to determine whether children with non-syndromic cleft lip and palate are more likely to be diagnosed with psychiatric disorders and whether cleft-related factors are related to psychopathology. A total of 20 children aged 6-16 years with cleft lip and palate were included in this study together with 40 controls without cleft lip and palate. Children were assessed by psychiatric interviews and by the Child Depression Inventory, State-trait Anxiety Invetory for Children, Piers-Harris Children Self-Concept Scale, Schedule for Affective Disorders and Schizophrenia for School-aged Children – Present and Lifetime version, Ankara Articulation Test, Weschsler Intelligence Scale for Children, Beck Anxiety Inventory and Beck Depression Inventory.

Feragen, 2009 is a cross-sectional study that assessed self-reported social experience in children with a cleft lip and/or palate. A total of 268 10-year old children were included in this study, also their parents were requested to participate. The Child Experience Questionnaire, Personal Inventory for Children and Satisfaction with Appearence Scales were used to study cognitive, emotional and psychosocial functioning.

Feragen, 2010_1 is a cross-sectional study that investigated associations between percieved peer harassment and satisfaction with appearence in children with a cleft lip and/or palate. A total of 661 children with a cleft (non-visible in 227 patients) aged 10-16 years were included in this study. Peer harassment was measured by the Child Experience Questionnaire. Satisfaction with appearence was measured with the Satisfaction with Appearence Scales.

Feragen, 2010_2 is a cross-sectional study that investigates the role of friendships and social acceptance in adolescents with a cleft. A total of 196 adolescents with a visible cleft, 93 with a non-visible cleft and 1832 controls with no cleft were includeed in this study. The adolescents aged 16 years filled out the Hopkins Symptom Checklist for depressive symptoms and the Self-Perception Profile for Adolescents.

Feragen, 2014 is a cross-sectional study that explores psychological functioning in adolescents with a cleft aged 16 years. A total of 857 adolescents with a cleft (non-visible in 284 participants) and 1832 healthy controls were included in this study. Cognitive, emotional, behavioral, appearence-related and psychosocial adjustment was assessed by the Hopkins Symptom Checklist, the Harter Self-Perception Scale for adolescents, the Child Experience Questionnaire and Satisfaction with Appearence Scale.

Hentges, 2011 reports a follow-up of the population of Murray, 2007, when the children are aged 7 yeras. Again, cognitive development of children with delayed lip closure (n=49), early lip closure (n=44) and healthy controls (n=77) were assessed in terms of Intelligent Quotient, language and school development.

Hoek, 2009 is a cross-sectional study that examined the social-emotional health of children with a cleft performed in the Netherlands. In total 80 children with a cleft, aged 9-12 years were included in this study. The participants, as well as their parents and teachers filled in questionnaires about their social-emotional health: the “Strengt hand Difficulties Questionnaire”, the “Child Behavior checklist” (parents) and the “Teacher’s Report form” (teachers).

Hunt, 2006 is a cross sectional study that aimed to determine the psychosocial effects of cleft lip and/or palate among children and young adults, and compare those effects to a control group without cleft lip and/or palate. A total of 160 children / young adults aged 8-21 years were included in this study, together with 113 controls. Psychological functioning was assessed using validated psychological questionnaires. Happiness with facial appearence was rated using the visual analogue scale. Social functioning, including experience with teasing/bullying was assessed using a semi-structured interview.

Hunt, 2007 is a cross-sectional study that aimed 1) to determine the opinion of parents regarding the psychosocial functioning of their child with cleft lip and palate, 2) to identify predictors of psychosocial functioning, 3) to determine the level of agreement between children with cleft lip and palate and their parents. A total of 129 parents of children with cleft lip and palate and 96 parents of healthy controls were included in this study. Children were aged 8-18 (mean 12) years. Parents completed the Child Behavioural checklist, were interviewed and gave their opinion of the child’s self-esteem, anxiety, happiness and problems caused by facial appearence using visual analogue scales.

Hutchinson, 2011 is a systematic review and meta-analysis that examined the cross-cultural psychosocial impact of cleft lip and/or palate in non-Anglo populations. A total of 4 studies containing 2276 adolescents and adults with cleft lip and palate were included in this review. The studies were performed in China, Hong-Kong, Taiwan and Norway. Effect sizes were estimated using Cohen’s d and confidence intervals.

Kramer, 2009 is a cross-sectional study that studied the quality of life and social functioning in schoolchildren with a cleft and their families. A total of 170 children with cleft lip and palate and their families were included in this study. Both child an family were requested to fill in the Impact on Family Scale Questionnaire. The results were compared with age-matched average scores of unaffected children from a control group of 132 families.

Murray, 2007 is an observational study in which the effect of early versus late cleft lip repair are studied on infant development and mother-infant interactions. A total of 94 infants with cleft lip, and 96 control infants were examined. Early lip closure (<1 month) was performed in 48 infants and late lip closure (3-4 months) in 55 infants. Cognitive development, behavioural problems and attachment were assessed at 2, 6 and 12 months.

Murray, 2010 is an observational study that studies the effect of cleft lip on socio-emotional functioning in school-aged children. A total of 93 children with cleft lip (wit hand without cleft palate) and 77 controls were included in this study at the age of 18 months, and followed for 7 years. Socio-emotional functioning of children was assessed using teacher and maternal reports, observations of social interactions, and child social representations.

Petrackova, 2015 is a observational study that compares the effects of early versus late exposure to anesthesia on intelligence quotient and psychosocial development in children who were operated for cleft lip. In 15 patient early lip closure, in the first 8 days of life, was performed. In 17 patients late repair, at 3-10 months, was performed. Intelligence quotient and psychosocial development were compared at the age of 3-7 years.

Roberts, 2012 is a systematic review that examined the cognitive functioning of children and adults with cleft lip and palate or cleft lip or cleft palate only. A total of 29 papers was included in this review, containing data from 1 546 persons with a cleft and 279 805 controls. The included studies showed large heterogenity (age of study population, length of follow-up, measurement of outcome variables). Cohen’s d effect sizes were calculated to compare the difference between the cognitive performance of the cleft and control groupsfor the 10 broad cognitive domains. Effect sizes were weighed by inverse variances (corrrected for sample size per study). Due to the large heterogeniety of the included studies, the results of these weighed effect sizes should be interpreted with caution.

Silfer, 2003 is a cross-sectional study in which the social interaction patterns of children with and without clefts were studied. A total of 34 children with oral clefts aged 8-15 years were matched to 34 non-cleft controls (match for sex, age and socioeconomic status). Participatents were videotaped while interacting with a peer confederate. The cleft- and control groups were compared on social behaviour.

Speltz, 2000 is a prospective longitudinal study that examines cognitive and psychomotor development in patients with a cleft. A total of 29 patients with cleft lip and palate, 28 with cleft palate only, and 69 healthy controls were included in this study. Infants were administered the Bayley Scales of Infant Development at the age of 3, 12 and 24 months.

Swanenburg de Veye, 2002 is a cross-sectional study which studies the association between associated congenital malformations and the mental and psychomotor development of children with clefts. A total of 148 children with cleft lip (n=56), cleft palate (n=32) or both (n=62) were included. The children’s level of development was determined by means of the Dutch version of the Bayley Scales of Infant Development.

Wehby, 2012 is a longitudinal database study (it is not mentioned whether the data collection was prospective or retrospective) that examines behavioural health in children aged 2-12 with oral clefts. A population-based sample of 104 children with oral clefts in the United States of America is used for this purpose. Behaviour was evaluated using the Child Behavior Checklist or the Pediatric Behaviour Scale 30, depending on age comapred with normative samples.

Wehby, 2014 is a longitudinal database study (it is not mentioned whether the data collection was prospective or retrospective) that compares the academic achievement of children with oral clefts to their classmates in a population-based study in the United States of America. The sample included 588 children with clefts (3744 child-grade observations) and 1874 classmates without clefts (13159 child-grade observations). Differences were assessed at different ages/levels of education (elementary, middle and high school). Academic achievement was essesed by using standardized tests of academic progress developed by the Iowa testing programs.

Results

Psychosocial interventions

Norman, 2014 concludes that out of the 7 included studies only 2 were randomized controlled trials (RCTs) and included for full data analysis (one of which failed to meet the full inclusion criteria). Both of these RCTs were performed in adults (some with clefts), and therefore, not relevant to answering our research question. The five remaining studies were observational and included only in a narrative synthesis, because data were available for people or parents of those with cleft lip and/or palate only. Two studies (Maddern, 2006; n=29 and Kapp-Simon, 2005, n=20) were performed in children (some with clefts) and one in parents of children with cleft palate (Pelchat, 2004, n=76).

Maddern, 2006 described the effect of cognitive behavioural training (CBT) in children with any form of disfigurement aged 5-16 years. A total of 4 sessions was administered by a clinical psychologist or assistant psychologist (duration of sessions not stated). Patients were followed for 6 months after the intervention. At 6 months follow-up children reported a reduction in the frequency of teasing and in the degree of distress it caused both in the classroom and in the playground. Parents reported reductions in their children's' somatizing behaviour and levels of anxiety.

Kapp-Simon, 2005 described the effect of social skills training (SST) in children with craniofacial conditions aged 12-14 years. A total of 12 sessions lasting 90 minutes were administered. Children on the waiting list for the SST served as controls. Both target and peer-controlled total communication improved across time with adolescents receiving social skills intervention showing significantly more improvement than those adolescents not receiving direct social skills interventions. Adolescents receiving treatment participated in significantly more target initiated conversations lasting at least three interchanges and showed a trend toward a greater frequency of target initiations and positive responses to peer initiations. Peers were more likely to respond to treatment subject initiations after intervention. Fewer treatment subjects used nondirected communication, whereas control subjects continued to use nondirected communication at a slightly increased frequency.

Pelchat, 2004 describes a family intervention programme (a form of CBT) in parents of newborn children with cleft lip and/or palate and Down syndrome. The intervention consisted out of 6-8 sessions administered by a nurse (duration of session not stated). Parents reported to be significantly satisfied about the intervention programme. Parents of children with cleft lip and/or palate were significantly more satisfied than the children of parents with Down’s syndrome.

Pooling and meta-analysis of data was not possible due to heterogeneity of the included studies. This review found no evidence to support any specific intervention.

Psychosocial development

Hunt, 2005 summarizes that the majority of adults and children with cleft lip and palate do not appear to experience major psychosocial problems. Berger, 2009; Collett, 2012; Hoek, 2009 and Feragen, 2014 concur with these findings. It has to be noted, though, that literature has tended to report the psychosocial functioning of cleft lip and palate children in a general way. This has often disguised specific problems that these children have in relation to adjustment, behavioural problems, self-concept, self-esteem, self-confidence, body image, satisfaction with facial appearence, satisfaction with speech, social life, anxiety, depression and learning problems. Children with cleft lip and palate has been described as more external in locus of control and significantly more field dependent than non-cleft controls. Children with cleft lip and palate also tend to have higher levels of hostility, negative self-worth, a negative outlook and greater dependence compared with the general population. Furthermore, children with cleft lip and palate tend to see their parents as having more negative feelings and worrying more, and adolescents express a lower degree of percieved parental acceptance than controls. Feragen, 2009 reports that psychosocial resilience is associated with adequate emotional functioning, high satisfaction with appearence and a lower frequency of reported teasing.

Self concept appears to be good among children with cleft lip and palate, in some cases even better than in the control group. This concurs with the findings of Kramer, 2009, who reports that children with cleft lip and palate have a better quality of life than the control group. But when present, limitations in quality of life in children with cleft lip and palate mostly affected the social role. However, when specific components of self-concept are examined, some problems emerge. Children with cleft lip and palate may have lower personal and social self-concept scores compared to non-cleft controls.

Self esteem is considered to be generally good among children with cleft lip and palate, although it has been linked to the child’s opinion about facial appearence. Children who are more accepting of their cleft tend to have higher self-esteem, and the more physically attractive a person rates themselves, the higher that person’s self-esteem tends to be. Children, adolescents and adults have reported that their self-confidence has been affected by having a cleft lip and palate. Hunt, 2007 reports that self-esteem is lower in children with clefts compared to healthy controls. Regarding timing of cleft lip surgery, Petrackova, 2015 reports that children with early cleft-lip surgery (<8 days) have a better selft esteem that those with late (3-10 months) lip surgery.

Regarding body-image, although most children seem relativeley satisfied, some features (nose and teeth) are considered less satisfactory and may result in problems with body image. There is conflicting evidence about satisfaction with facial appearence, 3 studies report that cleft lip and palate patients are generally pleased with their facial appearence, while 5 studies report that many cleft lip and palate patients express dissatisfaction. Silfer, 2003 also reports that children with clefts and their parents report greater dissatisfaction with facial appearence. A visible scar appears to be of most concern. Likewise, Feragen, 2014 reports that cleft visibility was a risk factor for dissatisfaction with appearence, while Feragen, 2010_1 states that cleft visibility was not associated with appearence dissatisfaction, although this relation is strongly mediated by experiences of peer harassment. Feragen, 2010_2 adds that subjective dissatisfaction with facial appearenc is related to depressive symptoms. Hunt, 2006 and Hunt, 2007 report that happiness with appearence is lower in children with clefts compared to healthy controls, and that this happiness is related to how visible the scar is and whether the child has been teased. Satisfaction with facial appearence has been linked to the incidence of behavioural problems, this finding is also reported in Wehby, 2012.

Regarding behavioural problems, there are contrasting reports in children with cleft lip and palate. On one hand, 2 studies reported that children with cleft lip and palate have higher than average levels of internalizing behaviour (that is a risk factor for developing anxiety problems). On the other hand, 2 studies reported that children with cleft lip and palate are less agressive than controls and do not exhibit any signs of delinquency.

Patients with cleft lip and palate appear to be more socially affected as a result of having a cleft (as reported by professionals who care for cleft lip and palate patients and self-reports by adults with cleft lip and palate). Several studies performed in the 1970’s have shown that young people with cleft lip and palate are more likely to drop out of school and less likely to belong to a club or society. Also, a larger proportion of adolescents with cleft lip and palate indicate no aspiration for further education, when compared to controls (also study from 1974).

Wehby, 2012 reports that most children with oral clefts had similar behavioural health outcomes as unaffected children, except for increased risk of inattention / hyperactivity ath the age 6-12 years. In contrast, Brand, 2008 reports that there was no difference in conduct problems or hyperactivity between children with cleft lip and palate and non-cleft controls aged 6 – 16 years. Hoek, 2009 also reports that there is less deviant behavior in children with clefts compared to controls with no clefts. Hunt, 2006 and Hunt, 2007 however report that more behavioural problems were reported in children with cleft lip and palate, when compared to healthy controls. Factors associated with behavioural problems were visibility of a scar and having being teased.

No studies regarding anxiety and depression in children with cleft lip and palate were reported, but in adults cleft lip and palate patients had a higher prevalence of anxiety and depression when compared to controls as assesed by Hunt, 2005. Also, dissatisfaction with facial appearence was found to be a predictor of depression, both among cleft lip and palate patients and controls, this finding is also confirmed in Feragen, 2010_2 and Demir, 2011. Murray, 2010 supplements that children with clefts aged 1.5 – 9 years had raised rates of teacher-reported social problems, and anxious and withdrawn-depressed behaviour. Hoek, 2009 also concludes that there is more depressive behaviour as reported by parents in children with clefts aged 9-12 years. Demir, 2011 supplements that social anxiety and major depressive disorder were more prevalent among children with cleft lip and palate than among controls without cleft lip and palate in children aged 6-16 years. However, Feragen 2010_2 reports that boys with a cleft report less depressive symptoms than their peers with no cleft, while overall there was no difference in depressive sypmtoms between 16-year olds with and without a cleft. Both Hunt, 2006 and Hunt, 2007 supplement that more anxiety was reported in children with cleft lip and palate when compared to healthy controls. Teasing was greater among participants who had cleft lip and/or palate and was a predictor of anxiety.

Regarding mother-child attachment, no differences were found between children with cleft lip and palate and controls in the studies described by Hunt, 2005. Likewise, Murray, 2007 reports no significant difference in attachment between cleft lip infants and their mothers versus controls at 18 months. However, some differences (less secure attachment for cleft infants) at 2 months of age are reported.

Regarding development, babies with cleft lip and palate at 5 months of age were found at risk of delayed development. However, at 36 months of age this difference seems to dissipate, except in the area of expressive language. A study from 2000, using both longitudinal and cross-sectional data, found that the difference in mental developmental scores decreased significantly as infants with cleft lip and palate increased in age. Specific learning problems have been described in two studies in children with cleft lip and palate with one study reporting that 1 in every 4 children with a cleft repeated a grade at school. The results of Wehby, 2014 concur with these conclusions: children with oral clefts had lower scores than their classmates across all domains of school levels. Furthermore, children with clefts were approximately one-half grade behind their classmates and had higher rates of academic underachievement. The Dutch study by Hoek, 2009 also reports that 1 in 3 children with a cleft had a learning problem. Timing of lip closure (and accompanying anesthesia) does not seem to influence the intelligence quotient or psychosocial development in patients with cleft lip, as reported by Petrackova, 2015. However, Murray, 2007 reports that late lip closure (3-4 months of age) is associated with worse scores on the Bayley Scales of Mental Development, when compared to neonatal lip closure. Hentges, 2011 supplements that the same infants as in Murray, 2007, at the age of 7 years, score lower on IQ, language and school achievements, compared to healthy controls, particulary those with late repair. Murray, 2010 and Silfer, 2003 also report that social interaction patterns of children with clefts are less developed than those of children without clefts. Also, in adults and adolescents with cleft lip and palate the level of psychosocial development is lower than in individuals without cleft lip and palate in a non-Anglosaxon population, as shown by the meta-analysis Hutchinson, 2011.

The type of cleft and its severity appears to have little influence on the individual’s overall psychosocial functioning. No significant association has been found between cleft type and the incidence of behavioural problems, self-esteem, mental and motor development or psychosocial functioning in general. However, a few differences between cleft types have been found in relation to self-concept, satisfaction with facial appearence, depression, attachment, learning problems and interpersonal relationships. In accordance with the findings of Hunt, 2005, Roberts 2012 reports that the cleft patients score lower than controls on the following cognitive domains: academic, attention / executive function, sensorimotor function, language and general cognition. However, cleft patients score similar to controls on the cognitive domains: visuospatian, memory (both delayed recall and immediate recall), motor skills and processing speed. Regarding differences in learning problems in relation to cleft type, Wehby, 2014 mentions that children with cleft lip and palate and cleft palate (but not children with cleft lip only) were more likely to use special education services. Swanenburg de Veye, 2002 reports that children with an isolated cleft palate showed the highes percentage of minor malformations that are minor, yet possibly worry some, while children with an isolated cleft lip showed the least. The children with associated congenital malformations appeared to be most disadvantaged with respect to their development. On the other hand Speltz, 2000 reports (in a slightly smaller sample) that the mental and psychomotor developmental scores of the cleft lip and palate group and the cleft palate only group were lower than those of the control group, but did not differ from one another.

Hunt, 2005 concludes that overall a few differences between cleft types have been found in relations esteem, satisfaction with facial appearence, depression, attachment, learning problems and interpersonal relationships. With a few exceptions, the age of the individuals with cleft lip and palate does not appear to influence the occurence or severity of psychosocial problems. However, the included studies lack uniformity and consistency required to adequately summarize the psychosocial problems resulting from cleft lip and palate.

Age and psychosocial problems

Hunt, 2005 concludes that overall the age of an individual with cleft lip and palate does not appear to influence the occurrence or severity of psychosocial problems. However, there are a few nuances to this conclusion. Increasing conduct problems have been reported as the child grows older. In relation to speech, parents and children with cleft lip and palate have reported increased satisfaction as the child grows older. While individuals of all ages have reported dissatisfaction with their facial appearence, one study did find that younger children and adolescents (age 10-15 years) were less satisfied with their appearence than subjects aged 20 years. Satisfaction with appearence in females has been found to decrease with age among those with inter-oral defects only.

Baker, 2008 concludes that for parents, having a younger child with cleft lip and palate is associated with a greater impact on the family than having an older child with cleft lip and palate.

Hutchinson, 2011 reports that adolescents are significantly less impacted by psychosocial issues than adults, in non-Anglosaxon populations.

Speltz, 2000 reports that in infants aged 3-24 months there is no difference in changes of psychomotor or mental developmental index accross time, when compared to healthy controls.

Wehby, 2012 finds that there is a significant difference (p<0.05) in inattention/ hyperactivity risk between children with oral clefts aged 2-5 years (4.4%) and aged 6-12 years (20.3%).

Wehby, 2014 supplements the conclusion of Hunt, 2005 that there were no consistent patterns of changes in educational achievements accross school levels (elementary-, middle- and high school).

Grading the evidence

Regarding the psychosocial development, a GRADE or EBRO assessment of the evidence could not be provided, since the research question was not prognostic, diagnostic or intervention-based by nature. Hence, no evidence tables were provided for the studies included in this part of the literature summary.

Regarding the psychosocial interventions, a GRADE or EBRO assessment of the evidence could not be provided, since there was insufficient evidence to support any psychosocial intervention.

Om de uitgangsvraag te kunnen beantwoorden is er een systematische literatuuranalyse verricht op basis van wetenschappelijke zoekvragen met bijbehorende PICO’s:

Wat is de effectiviteit van psychosociale begeleiding vanuit een multidisciplinair team voor kinderen met schisis en hun ouders?

P: Patiënten met schisis en de ouders van patiënten met schisis

I: Psychosociale begeleiding

C: -

O: Voldoende kennis over psychosociale aspecten van schisis, psychosociaal welbevinden van kind en ouders, kwaliteit van leven, psychosociale ontwikkeling.

Wat voor psychosociale problemen in de ontwikkeling komen voor bij kinderen met schisis en wanneer uiten deze problemen zich?

P: Patiënten met schisis en de ouders van patiënten met schisis

I: -

C: -

O: Voldoende kennis over psychosociale ontwikkeling van kinderen met schisis, ontwikkeling, intelligentie en gedrag.

Relevante uitkomstmaten

De werkgroep achtte kwaliteit van leven van het kind, adequate psychosociale ontwikkeling, intelligentie, aanwezigheid van gedragsstoornissen en psychosociaal welbevinden van kind en ouders de voor de besluitvorming kritieke uitkomstmaten.

De werkgroep achtte de kennis over psychosociale ontwikkeling een voor de besluitvorming belangrijke uitkomstmaat.

Search and selection (methods)

A systematic search was performed in the databases of Medline (through OVID), Embase and the Cochrane Library between 1980 and October 21st, 2014 for PICO 1 and between 2000 and March 9th 2015 . This search was aimed to identify systematic reviews, RCTs and observational studies.

For PICO 1 studies were selected if they investigated the effectiveness of psychological interventions on the psychosocial development of children with cleft lip and/or palate and/or their parents. Children were identified as younger than 18 years of age. Data on effect sizes or primary data had to be available for at least one of the outcomes of interest: quality of life (of children with cleft palate and/or their parents), psychological/psychosocial development (of children with cleft palate and/or their parents), intelligence, behavioral disorders and knowledge of psychosocial development. For PICO 1: the initial search identified 213 references of which 12 were assessed on full text. After assessment of full text 11 studies were excluded and 1 study was included.

For PICO 2 studies were selected if they investigated the psychosocial development of children with cleft lip and/or palate and/or their parents. Children were identified as younger than 18 years of age. Data on effect sizes or primary data had to be available for at least one of the outcomes of interest: quality of life (of children with cleft palate and/or their parents), psychological/psychosocial development (of children with cleft palate and/or their parents), intelligence, behavioral disorders and knowledge of psychosocial development.

For PICO 2: the initial search identified 376 references of which 34 were assessed on full text. After assessment of full text 9 studies were excluded and 25 studies were included. Regarding the psychosocial development, a GRADE or EBRO assessment of the evidence could not be provided, since the research question was not prognostic, diagnostic or intervention-based by nature. Hence, no evidence tables were provided for the studies included in this part of the literature summary.