Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child's cleft diagnosis.

BACKGROUND AND AIM: Parents of children with a cleft lip and palate may be emotionally affected by the child's diagnosis. Their experiences and perceptions are important when evaluating the complexity of satisfactory treatment outcomes. The objective was to examine parents' social and emotional experiences related to their child's cleft diagnosis, and their perceptions of the child's adjustment to living with a visible difference. DESIGN: International multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. METHODS: A cohort of 448 children born with a non-syndromic UCLP were included. A total of 356 parents completed the Scandcleft Parent Questionnaire. RESULTS: The majority of parents experienced practical and emotional support from family, friends, and health professionals. Nevertheless, parents had to cope with other people's reactions to the cleft, experiences that were described as ranging from hurtful to neutral and/or positive. According to parents, 39% of the children had experienced cleft-related comments and/or teasing. More than half of the parents reported specific worries related to their child's future. CONCLUSION: While the majority of the parents experienced positive support and coped well with the child's diagnosis, some parents were at risk for psychological and emotional challenges that should be identified by the cleft team. To optimise outcomes and the child's adjustment, these parents should be offered psychological support when necessary. TRIAL REGISTRATION: ISRCTN29932826.

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.

BACKGROUND AND AIM: Few studies have explored children's emotional and behavioural reactions to cleft surgery and treatment-related stress. The objective was to investigate parents' evaluations of appearance and treatment outcomes in their 5-year-old child with unilateral cleft lip and palate (UCLP), and their perceptions of how their child was coping with treatment, comparing this information with recorded postsurgical complications. DESIGN: Three parallel group randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. METHODS: Three different surgical procedures for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with a non-syndromic UCLP. A total of 356 parents completed the Scandcleft Parent Questionnaire, and 346 parents completed the Cleft Evaluation Profile. RESULTS: The results indicated that the majority of parents were satisfied with cleft-related features of their child's appearance. Further, most children coped well with treatment according to their parents. Nevertheless, 17.5% of the children showed minor or short-term reactions after treatment experiences, and 2% had major or lasting difficulties. There were no significant relationships between parent perceptions of treatment-related problems and the occurrence of post-surgical medical complications. CONCLUSIONS: Most parents reported satisfaction with their child's appearance. However, treatment-related problems were described in some children, urging cleft centres to be aware of potential negative emotional and behavioural reactions to treatment in some young children, with a view to preventing the development of more severe treatment-related anxiety. TRIAL REGISTRATION: ISRCTN29932826.

A Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 1. Planning and management.

BACKGROUND AND AIMS: Longstanding uncertainty surrounds the selection of surgical protocols for the closure of unilateral cleft lip and palate, and randomised trials have only rarely been performed. This paper is an introduction to three randomised trials of primary surgery for children born with complete unilateral cleft lip and palate (UCLP). It presents the protocol developed for the trials in CONSORT format, and describes the management structure that was developed to achieve the long-term engagement and commitment required to complete the project. METHOD: Ten established national or regional cleft centres participated. Lip and soft palate closure at 3-4 months, and hard palate closure at 12 months served as a common method in each trial. Trial 1 compared this with hard palate closure at 36 months. Trial 2 compared it with lip closure at 3-4 months and hard and soft palate closure at 12 months. Trial 3 compared it with lip and hard palate closure at 3-4 months and soft palate closure at 12 months. The primary outcomes were speech and dentofacial development, with a series of perioperative and longer-term secondary outcomes. RESULTS: Recruitment of 448 infants took place over a 9-year period, with 99.8% subsequent retention at 5 years. CONCLUSION: The series of reports that follow this introductory paper include comparisons at age 5 of surgical outcomes, speech outcomes, measures of dentofacial development and appearance, and parental satisfaction. The outcomes recorded and the numbers analysed for each outcome and time point are described in the series. TRIAL REGISTRATION: ISRCTN29932826.

A comprehensive screening, education, and training tool for the psychological assessment of patients seeking aesthetic surgery: "DESIRABLE OP?".

Patients may seek aesthetic surgery for many reasons. They may present with expectations for both the surgical outcome and the impact that their changed appearance will have on their lives. The desire for an aesthetic procedure is usually driven by increased levels of self-consciousness. The surgeon must be able to identify those patients where the psychological outcome of aesthetic surgery is likely to be poor, and where the self-consciousness of the patient is abnormal. A mnemonic (DESIRABLE OP) is presented with the aim of providing surgeons with a screening tool that can lead them through the psychological assessment of any patient seeking an aesthetic procedure and enable them to determine whether its undertaking constitutes a desirable operation?

Meeting the psychological needs of patients with facial disfigurement.

Those with congenital or acquired disfigurement are faced with the challenges of social reactions and their own psychological responses to looking different. There is no simple linear relation between the degree of disfigurement and the degree of experienced distress. Factors that influence an individual's ability to cope include the social meaning of the disfigurement, life history, social and family support, and developmental stage. Decision-making about surgery, including that for those seeking aesthetic surgery, should take account of these complex factors to understand the patient's needs, ensure informed consent, and avoid unnecessary or ill-timed surgery. All those working with patients with disfigurement should have an understanding of their psychosocial needs, and there should be access to an identified member of staff such as a clinical nurse specialist with counselling skills, and a recognised referral route to a psychologist or liaison psychiatrist.

The psychological and social impact of disfigurement to the hand in children and adolescents.

Hand disfigurement creates potential problems for the developing child. Parental adjustment to the hand is of prime importance in the child's ability to accept and integrate the disfigurement. Self-consciousness follows a developmental path because of internal and external factors in the child's development. This paper presents a research study carried out in order to examine the decision-making process in toe-to-hand transfers. 34 families were assessed of whom 27 decided to proceed with surgery following the decision-making process. Factors which influenced that decision included the way the surgeon communicated information. Those who decided against surgery tended to have more positive beliefs about the role of the disfigured hand in the child's psychological development. The process of decision-making allowed families and the older children to engage in a therapeutic approach.

Psychological outcome of patients following treatment of oral cancer and its relation with functional status and coping mechanisms.

BACKGROUND: Traditionally health-care providers have measured outcome of treatment of disease by focusing on tumour response and disease-free survival. However, it has become increasingly apparent that the behavioural and functional impact of treatment on the patient is important. This study investigates the psychological outcome and its relationship with functional status and coping mechanisms following treatment of oral cancer patients. MATERIAL AND METHODS: Sixty-eight patients were evaluated 6 months to 6 years after treatment (from October 1992 to October 1997) for oral cancer. The Hospital Anxiety and Depression Scale (HADS) was used for psychological evaluation, the University of Washington Quality of Life Questionnaire (UW-QOL) and The European Organisation for Research and Treatment of Cancer Questionnaire (EORTC QLQ-C30) for evaluating the head and neck specific and general functional status, respectively. Finally, the "Mental Adjustment to Cancer Questionnaire" (MAC-Q) was used for evaluation of coping mechanisms. RESULTS: The incidence of anxiety and/or depression was 25% and the socio-demographic and medical characteristics showed poor correlation with the psychological outcome in this study. The results indicated that there was a strong association between psychological outcome and head and neck specific and general quality-of-life (QOL) domains, and style of coping. The p-value was less than 0.01 for most of the domains and items of functional status and the effective coping style. CONCLUSION: Deteriorated functional status and ineffective coping strategies are strongly associated with poor psychological outcome in patients with oral cancer.

Psychosocial outcome of patients after ear reconstruction: a retrospective study of 62 patients.

This was a retrospective study examining the psychosocial morbidity of patients before and after ear reconstruction. Semistructured questionnaires were sent to 90 patents with significant congenital or acquired auricular deformity 2.2 years (range 3 months to 5 years) following autogenous or osteointegrated reconstruction. Sixty-two patients (69%) responded. Twenty-two of the patients below 12 years, who had undergone reconstructive surgery, also completed the Childhood Experience Questionnaire. These were compared with a cohort of 362 normal patients. There was significant psychosocial morbidity in both children and adults with auricular deformity. Seventy-one percent of patients reported reduced self-confidence that affected both social life and leisure activity. Teasing was a prominent symptom in both children (88%) and adults (85%) but was a motivational factor for surgery in children only. Dissatisfaction with the appearance (73.1%), on the other hand, was the main reason for treatment in adults. Following ear reconstruction, 74% of adults and 91% of children reported an improvement in self-confidence resulting in enhanced social life and leisure activities in both adults and children. There was no difference between osteointegrated and autogenous reconstruction. Sixty percent of patients reported their result as excellent. The patients scored their result better than the surgeon. We conclude that auricular reconstruction has significant psychosocial benefit in the majority of children and adults despite donor-site morbidity and a range of technical result.