The purpose of this study was to investigate the key factors in relation to parent satisfaction with the primary repair of paediatric cleft lip. One hundred and ninety-five children born with cleft lip and/or palate aged between 3 months and 1 year were recruited, along with their caregivers. All patients underwent primary cleft lip repair, and a telephone interview was held with their main caregivers at 3 months postoperative. The level of satisfaction with each item included in a simplified Cleft Evaluation Profile was ascertained and recorded. Patient clinical data were obtained from the medical records. One hundred and thirty-eight (71%) parents reported satisfaction with the general outcome of surgery. Parents were satisfied with the appearance of the lip and profile of the face, but were dissatisfied with the appearance of the nose and teeth. Mothers of patients showed lower satisfaction levels than fathers and grandparents. Parental satisfaction with the appearance of the lip was lower for patients without a cleft palate than for those with a cleft palate. The results of this study suggest that most Chinese parents of children who undergo primary cleft lip repair express satisfaction with the surgical outcomes. Satisfaction with the appearance of the nose and teeth is low and this needs to be improved. Other factors are likely to influence expressions of satisfaction.
Clefts of the lip and/or palate (CLP) are common congenital malformations, with an incidence of about 1.2 in 1000 live-births in the Chinese population. The treatment for CLP is a complicated, time-consuming, and multidisciplinary procedure, involving the fields of otolaryngology, plastic surgery, maxillofacial surgery, orthodontics, speech therapy, paediatrics, nursing, genetic counselling, audiology, psychology, and social work. This multispecialty care for CLP is aimed at physical rehabilitation as well as psychological outcomes, so that the quality of life of patients and their families can be improved.
Surgeons try their best to gain satisfactory outcomes by continuing to improve the treatments and techniques. However, the views of the patients and their parents with regard to these surgeries remain unclear to the surgeons. Most research has indicated that patients and their parents show high levels of overall satisfaction with cleft care and surgical outcomes. However, less satisfaction is expressed by patients and parents for each aesthetic subunit in the nasolabial region. Additionally, studies performed in Uganda, the UK, and Malaysia have shown that patients and parents are most dissatisfied with the teeth. A survey conducted in Flemish children with CLP in Belgium showed that dissatisfaction was greatest for the appearance of the profile. Other authors have reported the appearance of the nose to be least satisfactory in Greek patients. Thus, it seems that patients from different nations and regions have different aesthetic opinions regarding their facial appearance. The effect of race and/or ethnicity on satisfaction with facial appearance in these patients has rarely been reported. It appears that no such study has been conducted previously in a Chinese population.
Furthermore, aside from consideration of patient satisfaction with aesthetics, the factors influencing parent satisfaction with cleft care are complicated and need to be clarified. In a small, prospective cohort study on satisfaction among low-income families of patients with CLP, the authors found that satisfaction with the outcomes did not correspond with the fulfilment of expectations. A survey conducted in adolescents with CLP showed that youth participation in surgical decision-making was associated with the perception of a positive surgical outcome. However, due to relatively small sample sizes, these previous studies were not able to divide subjects into different groups to explore the possible factors influencing ratings of satisfaction. Meanwhile, participants in these previous studies were of quite different ages and in different stages of treatment. Thus, the exact composition of social, psychological, cultural, and clinical factors that leads to the expression of satisfaction remains unclear.
The present study had two aims: (1) to investigate the parents’ view of primary cleft lip repair (usually the first step in a treatment approach for CLP) amongst Chinese patients with CLP and (2) to investigate the relative impact of social, economic, and clinical factors on satisfaction with the surgical outcomes.
Materials and methods
Patients aged between 3 months and 1 year who presented a cleft lip with or without a cleft palate and who underwent primary cleft lip repair between 1 January 2014 and 30 June 2015 were recruited, along with their caregivers. Of the 368 potential families contacted, 195 (53%) were eligible and agreed to participate. Exclusion criteria for patients were the following: additional birth defects, other syndromes, postoperative complications, and having undergone other operations before the primary cleft lip repair. Exclusion criteria for caregivers were the following: a mental health diagnosis, addiction to drugs or alcohol, non-Chinese nationality, and cannot speak and read Chinese.
The survey used to assess satisfaction with the cleft-related features was based on the Cleft Evaluation Profile (CEP). This assessment originated from the Royal College of Surgeons Cleft Lip and Palate Audit Group and is considered the most commonly used questionnaire to evaluate patient subjective views of satisfaction. The CEP contains eight items (speech, hearing, appearance of the teeth, appearance of the lip, appearance of the nose, breathing though the nose, profile of the face, bite), which are related to features that play a major role in both facial appearance and function among patients with CLP. In several previous investigations, patients with CLP and/or their parents were asked to rate their satisfaction level for each item on a 7-point Likert scale, ranging from ‘very satisfactory’ to ‘very unsatisfactory’. In other previous investigations, the CEP was modified or simplified to fit with certain special conditions. For example, a simplified CEP was used in a survey in Uganda; this CEP contained only six items and changed the 7-point Likert scale for a two-choice option–‘satisfied’ or ‘dissatisfied’. Another survey in Belgium changed the CEP into a 7-item and 4-point Likert scale edition.
A modified and simplified version of the original CEP was used in the present study to fit with two special conditions. First, patients enrolled in this study were too young to describe function, thus items related to function (speech, hearing, breathing through the nose, bite) were not included. All patients in this study were aged ≤1 year and so had not formed their whole dentition. Therefore, the appearance of the teeth was not considered in terms of a view of the complete dental arch. Instead, delayed eruption, dislocation, and the poor shape of a single tooth were considered as unsatisfactory with regard to the appearance of the teeth. Second, all of the participants in this study were asked questions through a telephone interview and they complained that the 7-point Likert scale was too complicated to answer. Thus the 7-point Likert scale was simplified into a 4-point Likert scale, ranging from ‘very unsatisfactory’ to ‘very satisfactory’.
Potential research subjects were identified from clinic lists. Each main caregiver of each patient agreed and signed informed consent and completed a form to gather basic information when taking their child to the hospital for primary cleft lip repair. A telephone interview with the main caregiver of the patient was conducted 3 months after the surgery, when the surgical wounds had healed fully and the scars had become basically stable. The level of satisfaction for each item in the simplified CEP was ascertained and recorded. To avoid possible bias in the interview, all interviews were conducted by a single interviewer who did not belong to the surgeon team. In the case where more than one parent accompanied the patient, the parent who participated was selected randomly by the interviewer. Clinical data concerning the patients were obtained from the medical records.
SPSS software version 18.0 (SPSS Inc., Chicago, IL, USA) was used for the statistical analysis of the data. Descriptive and analytical statistics were performed for interview schedules and the CEP. Differences in satisfaction ratings related to factors were analysed separately using the Kruskal–Wallis analysis of variance (ANOVA) test. The significance level was set at P < 0.05.