Quality of Life Among Dutch Children With a Cleft Lip and/or Cleft Palate: A Follow-Up Study.

OBJECTIVES: The aims of the present study were to examine the impact of a cleft lip and/or palate on the oral health-related quality of life (OHRQoL) in children, to examine differences between the OHRQoL scores reported by children and their parents, and to examine differences between the scores over 4 years for a subgroup of children. DESIGN: Prospective blinded questionnaires. SETTING: All patients were recruited from a university clinic at Academisch Centrum Tandheelkunde Amsterdam. PARTICIPANTS: The sample consisted of 170 children (age between 8 and 18 years) and their parents. INTERVENTIONS: All participants completed the validated Dutch version of the Child Oral Health Impact Profile (COHIP) questionnaire. MAIN OUTCOME MEASURES: The OHRQoL of children with a cleft lip and/or cleft palate (CL/P) was measured. RESULTS: Parents scored significantly higher than children on the subscale "Oral Symptoms." On the subscale "Functional Well-Being," parents scored significantly lower than children. Females scored significantly higher with regard to the subscales "Functional Well-Being" and "School" in comparison to males. Children with a bilateral CL/P scored significantly lower on the subscale "Functional Well-Being" and "School" than other subgroups. Children reported a decrease in "Oral Symptoms" and "Emotional Well-Being" over time. CONCLUSIONS: Children and their parents both reported high OHRQoL overall with some areas of difference. Females reported a better OHRQoL on "Functional Well-Being" and "School." Children with the more complex bilateral CL/P had a significantly lower OHRQoL score on "Functional Well-Being," "School," and overall COHIP.

Rating Nasolabial Aesthetics in Unilateral Cleft Lip and Palate Patients: Cropped Versus Full-Face Images.

OBJECTIVE: To determine if cropping facial images affects nasolabial aesthetics assessments in unilateral cleft lip patients and to evaluate the effect of facial attractiveness on nasolabial evaluation. DESIGN: Two cleft surgeons and one cleft orthodontist assessed standardized frontal photographs 4 times; nasolabial aesthetics were rated on cropped and full-face images using the Cleft Aesthetic Rating Scale, and total facial attractiveness was rated on full-face images with and without the nasolabial area blurred using a 5-point Likert scale. SETTING: Cleft Palate Craniofacial Unit of a University Medical Center. PATIENTS: Inclusion criteria: nonsyndromic unilateral cleft lip and an available frontal view photograph around 10 years of age. EXCLUSION CRITERIA: a history of facial trauma and an incomplete cleft. Eighty-one photographs were available for assessment. MAIN OUTCOME MEASURES: Differences in mean CARS scores between cropped versus full-face photographs and attractive versus unattractive rated patients were evaluated by paired t test. RESULTS: Nasolabial aesthetics are scored more negatively on full-face photographs compared to cropped photographs, regardless of facial attractiveness. (Mean CARS score, nose: cropped = 2.8, full-face = 3.0, P < .001; lip: cropped = 2.4, full-face = 2.7, P < .001; nose and lip: cropped = 2.6, full-face = 2.8, P < .001). CONCLUSION: Aesthetic outcomes of the nasolabial area are assessed significantly more positively when using cropped images compared to full-face images. For this reason, cropping images, revealing the nasolabial area only, is recommended for aesthetical assessments.

The Development of the Cleft Aesthetic Rating Scale: A New Rating Scale for the Assessment of Nasolabial Appearance in Complete Unilateral Cleft Lip and Palate Patients.

OBJECTIVE: The development of the Cleft Aesthetic Rating Scale, a simple and reliable photographic reference scale for the assessment of nasolabial appearance in complete unilateral cleft lip and palate patients. DESIGN: A blind retrospective analysis of photographs of cleft lip and palate patients was performed with this new rating scale. SETTING: VU Medical Center Amsterdam and the Academic Center for Dentistry of Amsterdam. PATIENTS: Complete unilateral cleft lip and palate patients at the age of 6 years. MAIN OUTCOME MEASURES: Photographs that showed the highest interobserver agreement in earlier assessments were selected for the photographic reference scale. Rules were attached to the rating scale to provide a guideline for the assessment and improve interobserver reliability. Cropped photographs revealing only the nasolabial area were assessed by six observers using this new Cleft Aesthetic Rating Scale in two different sessions. RESULTS: Photographs of 62 children (6 years of age, 44 boys and 18 girls) were assessed. The interobserver reliability for the nose and lip together was 0.62, obtained with the intraclass correlation coefficient. To measure the internal consistency, a Cronbach alpha of .91 was calculated. The estimated reliability for three observers was .84, obtained with the Spearman Brown formula. CONCLUSION: A new, easy to use, and reliable scoring system with a photographic reference scale is presented in this study.

Factors influencing attitude toward care of dying patients in first-year nursing students.

AIM: To describe Swedish first-year undergraduate nursing students' attitudes toward care of dying patients. Possible influences such as age, earlier care experiences, care education, experiences of meeting dying patients and place of birth were investigated. METHOD: The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) was used in six universities. Descriptive statistics and regression analysis were used. RESULTS: Some 371 students (67.3%) reported overall positive attitude toward caring for dying patients (total mean FATCOD 119.5, SD 10.6) early in their first semester. Older students, students with both earlier care experience and earlier education, those with experience of meeting a dying person, and students born in Sweden reported the highest scores, a more positive attitude. CONCLUSION: Age, earlier care experience and education, experiences of meeting a dying person and place of birth seems to affect students' attitudes toward care of the dying and need to be considered among nursing educators.

Expectations of treatment and satisfaction with dentofacial appearance in patients applying for orthodontic treatment.

INTRODUCTION: Satisfaction with dentofacial appearance and expectations of orthodontic treatment have been analyzed in many studies. In 2002, in a study in The Netherlands, significant correlations were found between dental satisfaction and orthodontic treatment expectations. Satisfaction significantly decreased with increasing age. The aim of this study was to compare the satisfaction and expectations of current patients with the results of a study 10 years ago. METHODS: A questionnaire about dentofacial satisfaction and a questionnaire about the expectations of orthodontic treatment were completed by 146 subjects. The mean scores in the present study were compared with the mean scores 10 years ago. RESULTS: The subjects in the present study were more satisfied with their dental appearance. Differences in expectations were found on the subscales of general well-being and self-image. As in the study in 2002, no significant correlations were found between sex, satisfaction, and expectations of orthodontic treatment. Dentofacial satisfaction predicts expectations about orthodontic treatment, especially in the group of subjects aged 17 years and above. CONCLUSIONS: The subjects in this study had greater expectations of orthodontic treatment about general well-being and were more satisfied with their dental appearance than were the subjects studied 10 years ago.

Two cases of axenfeld-rieger syndrome, report of the complex pathology and treatment.

The purpose of this case report is to report the orthodontic surgical treatment and subsequent dental rehabilitation in two patients with Axenfeld-Rieger syndrome. Axenfeld-Rieger syndrome is a rare autosomal dominant condition characterized by ocular, dental, craniofacial, and periumbilical abnormalities. The treatment of two patients with various anomalies in Axenfeld-Rieger syndrome is described and discussed. Early recognition of the syndrome and referral during childhood to a specialized oral and maxillofacial surgery, special dental care, and orthodontic unit provide the optimal starting point for this complex treatment.

Death and caring for dying patients: exploring first-year nursing students' descriptive experiences.

AIM: To describe first-year nursing students' experiences of witnessing death and providing end-of-life care. METHODS: This study is part of a larger longitudinal project. Interviews (n=17) were conducted with nursing students at the end of their first year of education. To analyse the interviews (lived-experience descriptions), a thematic analysis, 'a search for meaning' ( Van Manen, 1997 ) was applied. RESULTS: The results are presented within the framework of four separate themes: (1) The thought of death is more frightening than the actual experience, (2) Daring to approach the dying patient and offering something of oneself, (3) The experience of not sufficing in the face of death and (4) Being confronted with one's own feelings. CONCLUSION: Nursing students require continuous support and opportunity to reflect and discuss their experiences about caring for dying patients and confronting death throughout the entirety of their education. In addition, teachers and clinical supervisors need to give support using reflective practice to help students to develop confidence in their capacity for caring for dying patients.

Swedish nursing students' reasoning about emotionally demanding issues in caring for dying patients.

AIM: To describe nursing students' reasoning about emotionally demanding questions concerning the care of dying patients. METHODS: The Frommelt Attitude Toward Care of the Dying (FATCOD) Scale was completed by students at the beginning of their education, and there was great variation in the responses to five items. At a follow-up measurement in the second year, an open-ended question, 'How did you reason when completing this question?', was added to each of the these five items. Qualitative content analysis was used to analyse the responses. RESULTS: Of 140 students who completed the FATCOD, 111 provided free-text responses. The analysis of these responses revealed three themes: death perceptions, the students' understanding of their current situation, and the nurse's responsibility. CONCLUSION: This study provides useful information on students' reasoning about emotionally demanding questions relating to the care of dying patients. Such knowledge is valuable in helping students to overcome their fear and fulfil their expectations concerning their future proficiency.

Comparison of two- and three-dimensional assessment methods of nasolabial appearance in cleft lip and palate patients: Do the assessment methods measure the same outcome?

OBJECTIVE: For the assessment of the nasolabial appearance in cleft patients, a widely accepted, reliable scoring system is not available. In this study four different methods of assessment are compared, including 2D and 3D asymmetry and aesthetic assessments. METHODS: The data and ratings from an earlier study using the Asher-McDade aesthetic index on 3D photographs and the outcomes of 3D facial distance mapping were compared to a 2D aesthetic assessment, the Cleft Aesthetic Rating Scale, and to SymNose, a computerized 2D asymmetry assessment technique. The reliability and correlation between the four assessment techniques were tested using a sample of 79 patients. RESULTS: The 3D asymmetry assessment had the highest reliability and could be performed by just one observer (Intraclass correlation coefficient (ICC): 0.99). The 2D asymmetry assessment of the nose was highly reliable when performed by just one observer (ICC: 0.89). However, for the 2D asymmetry assessment of the lip more observers were needed. For the 2D aesthetic assessments 3 observers were needed. The 3D aesthetic assessment had the lowest single-observer reliability (ICC: 0.38-0.56) of all four techniques. The agreement between the different assessment methods is poor to very poor. The highest correlation (R: 0.48) was found between 2D and 3D aesthetic assessments. Remarkably, the lowest correlations were found between 2D and 3D asymmetry assessments (0.08-0.17). CONCLUSION: Different assessment methods are not in agreement and seem to measure different nasolabial aspects. More research is needed to establish exactly what each assessment technique measures and which measurements or outcomes are relevant for the patients.

Understanding the role of an educational model in developing knowledge of caring for older persons with dementia.

BACKGROUND: Statistics show that the number of older people in need of care is increasing worldwide, especially those with dementia. This implies demands on knowledge and competence among health care staff to care for them. In Sweden, Silviahemmet offers dementia care units the opportunity to become certified according to a special certification educational model. Silviahemmet provides educational programs for staff in dementia care and day care for person with dementia. All staff undergoes a systematic training course in dementia care. The aim of the study was to gain an understanding of how an educational model developed the perceived knowledge of staff caring for older persons with dementia in a nursing home. METHOD: A phenomenographical approach was used and qualitative interviews were carried out with 13 staff members in a nursing home. FINDINGS: The main results show that staff perceives the importance of knowledge, working together and creating a sense of fellowship. The care of persons with dementia requires a special approach and adherence. Participating in the educational program made the staff realize and acknowledge their tacit knowledge and the importance of reflection-in-action together in the team. CONCLUSION: The results indicate the need for a common theoretical knowledge base and value system to achieve coherence in daily work.

Nursing students' perceptions of caring for dying people, after one year in nursing school.

AIM: To describe Swedish nursing students' perceptions of caring for dying people after the first year of a three year in a nursing programme at three university nursing schools in Sweden. METHODS: Interviews (n=17) were undertaken with nursing students at the end of their first year. A phenomenographic approach was used to design and structure the analysis of the nursing students' perceptions. RESULTS: The analysis resulted in five categories: 1) from abstract to reality, 2) from scary to natural, 3) increased knowledge can give bad conscience, 4) time limits versus fear of end-of-life conversations, and 5) meeting with relatives. CONCLUSION: Nursing students need to be prepared both theoretically and within practice to encounter death and dying and to care for dying persons. By combining their theoretical knowledge of dying and death with their own encounters of death and dying people in practice, the students can be supported to develop an understanding of dying and death as a natural part of life rather than something frightening.

Oral health-related quality of life in Dutch children with cleft lip and/or palate.

OBJECTIVE: To investigate the oral health-related quality of life (OH-RQoL) of Dutch cleft lip and palate patients. It was hypothesized that (1) there is no difference between cleft patients' and their parents' reports of patients' OH-RQoL; (2) there are no gender differences; (3) there are no differences in OH-RQoL between cleft patients with regard to their symptoms; and (4) there is no difference between patients above and below 12 years of age. MATERIALS AND METHODS: The sample consisted of 122 patients with clefts (age range, 8-15 years) and their parents. Respondents were recruited from the cleft palate team of Amsterdam. They completed the Child Oral Health-Related Quality of Life questionnaire (COHIP). Items were divided into five different subscales, and scores on all subscales were compared between and within groups. RESULTS: Patients' and parents' perceptions differed significantly on three of the five subscales. Girls and boys did not differ significantly with regard to their perception of reported OH-RQoL. The cleft lip and cleft lip and alveolus [CL(A)] subgroup scored significantly higher on the functional well-being subscale. The cleft patients aged 12 years and older scored significantly lower on the emotional well-being and oral symptoms subscales when compared with their younger peers. CONCLUSIONS: Only the second hypothesis was not rejected in this study. This means that parents are not interchangeable with regard to reporting on their children's perceptions related to OH-RQoL, that OH-RQoL changes with age, and that it is important that subgroups are respected when investigating OH-RQoL in cleft patients.

Presurgical orthopedics and satisfaction in motherhood: a randomized clinical trial (Dutchcleft).

OBJECTIVE: To study the effect of infant orthopedics on satisfaction in motherhood. DESIGN: Prospective two-arm randomized controlled trial in parallel with three participating academic cleft palate centers. Treatment allocation was concealed and was performed by means of a computerized balanced allocation method. SETTING: Cleft palate centers of Amsterdam, Nijmegen, and Rotterdam, the Netherlands. PATIENTS: Two groups of infants with complete unilateral cleft lip and palate and no other malformations. INTERVENTIONS: Group IO+ (n = 27) wore passive maxillary plates during the first year of life, group IO- (n = 27) did not. MAIN OUTCOME MEASURE(S): Mean satisfaction scores were obtained from completed questionnaires at 6, 24, and 58 weeks of age. A 4-point scale was used (1 = very satisfactory to 4 = very unsatisfactory). RESULTS: The range of the mean scores for the individual items on the questionnaires for both groups ranged between 1.1 and 2.4. No differences were found between groups. Mothers appear to be satisfied in motherhood, least satisfied with the available time for themselves, and very satisfied with hugging and walking their babies. No differences were found between groups. CONCLUSIONS: Results from the present study show that infant orthopedics, with a passive plate during the first year of life, in children with a unilateral cleft lip and palate has no influence on the mothers' satisfaction in motherhood.

Infant orthopedics and facial appearance: a randomized clinical trial (Dutchcleft).

OBJECTIVE: To study the effect of infant orthopedics on facial appearance. DESIGN: Prospective two-arm randomized controlled trial in parallel with three participating academic cleft palate centers. Treatment allocation was concealed and performed by means of a computerized balanced allocation method. SETTING: Cleft Palate Centers of Amsterdam, Nijmegen, and Rotterdam, the Netherlands. PATIENTS: Infants with complete unilateral cleft lip and palate, no other malformations. INTERVENTIONS: One group (IO(+)) wore passive maxillary plates during the first year, the other group (IO(-)) did not. MAIN OUTCOME MEASURE(S): Two metrical response modalities were used (i.e., visual analog scales and reference scores) to score facial appearance. Full face and cropped photographs were compared with reference photographs and were judged. The photographs were judged by 45 judges, 24 laypeople, and 21 professionals. Transformation of the scores into z scores was applied to compare and to pool both response modalities. The validity of each individual judge was evaluated, as was the reliability of the scales. Differences between the treatment groups were evaluated by means of t tests. RESULTS: Photographs were available of 41 subjects, 21 with and 20 without infant orthopedics. No significant differences were found between groups. Mean z-score values for the full-face photographs were: group IO(+) = 0.10 (SD = 0.73) and group IO(-) = -0.03 (SD = 0.48); for the cropped photographs were: group IO(+) = 0.12 (SD = 0.71) and group IO(-) = -0.06 (SD = 0.55). CONCLUSIONS: Infant orthopedics have no effect on facial appearance.

Infant orthopedics in UCLP: effect on feeding, weight, and length: a randomized clinical trial (Dutchcleft).

OBJECTIVE: To study the effects of infant orthopedics (IO) on feeding, weight, and length. DESIGN: Prospective two-arm randomized controlled trial in three academic Cleft Palate Centers. Treatment allocation was concealed and performed by means of a computerized balanced allocation method. SETTING: Cleft Palate Centers of Amsterdam, Nijmegen, and Rotterdam, the Netherlands. PATIENTS: Infants with complete unilateral cleft lip and palate (UCLP), no other malformations. INTERVENTIONS: One group (IO+) wore passive maxillary plates during the first year of life, but the other group (IO-) did not. All other interventions were the same for both groups. MAIN OUTCOME MEASURES: Bottle feeding velocity (mL/min) at intake, 3, 6, 15, and 24 weeks (T0 to T24); weight-for-age, length-for-age, and weight-for-length using z scores; reference values from the Netherlands' third nationwide survey on growth. RESULTS: Feeding velocity increased with time from 2.9 to 13.2 mL/min in the IO- group and from 2.6 to 13.8 mL/min in the IO+ group; no significant differences were found between groups. Weight-for-age, length-for-age, and weight-for-length (z scores) did not differ significantly between groups, but overall the infants with unilateral cleft lip and palate in both groups had significantly lower mean z scores for weight-for-age and height-for-age than the reference during the first 14 months, and had lower mean values for weight-for-length after soft palate closure. CONCLUSION: Infant orthopedics with the aim of improving feeding and consequent nutritional status in infants with unilateral cleft lip and palate can be abandoned.

A randomized prospective clinical trial of the effect of infant orthopedics in unilateral cleft lip and palate: prevention of collapse of the alveolar segments (Dutchcleft).

OBJECTIVE: To study the effect of infant orthopedics (IO) on maxillary arch form and position of the alveolar segments. DESIGN: Prospective two-arm randomized, controlled trial in parallel with three participating academic cleft palate centers. Treatment was assigned by means of a computerized balanced allocation method. SETTING: Cleft palate centers of Amsterdam, Nijmegen, and Rotterdam, the Netherlands. PATIENTS, PARTICIPANTS: Infants with complete unilateral cleft lip and palate and no other malformations. INTERVENTIONS: One group (IO+) wore passive maxillary plates during the first year of life; the other group (IO-) did not. All other interventions were the same. MAIN OUTCOME MEASURE(S): The presence of contact and/or overlap (collapse) between the maxillary segments at maxillary casts made shortly after birth, at 15, 24, 48, 58, and 78 weeks. Survival experience of contact and collapse with time as well as the frequencies of different arch forms and severity of collapse were evaluated. RESULTS: Comparable arch forms with no contact or overlap of the maxillary segments were seen at birth in both groups. With time the frequency of collapse increased, with no significant differences between groups. No significant group differences were found with respect to the survival experience of contact and collapse or for the severity of collapse at the end of the observational period. CONCLUSIONS: Infant orthopedics does not prevent collapse and can be abandoned as a tool to improve maxillary arch form.

Cost-effectiveness of infant orthopedic treatment regarding speech in patients with complete unilateral cleft lip and palate: a randomized three-center trial in the Netherlands (Dutchcleft).

OBJECTIVE: To investigate the cost-effectiveness of infant orthopedic treatment (IO), compared with no such treatment in children with complete unilateral cleft lip and palate (UCLP) focusing on the effects on speech development at age 2.5 years. DESIGN: In a three-center prospective, randomized clinical trial (Dutchcleft), two groups of children with complete UCLP were followed longitudinally: one group was treated with IO based on a modified Zurich approach in the first year of life (IO group) and the other group did not receive this treatment (non-IO group). PATIENTS: The participants had complete UCLP without soft tissue bands or other malformations. They were born at term and their parents were native Dutch speakers. OUTCOME MEASURES: The effect of IO on speech development at age 2.5 years was measured blindly by five expert listeners judging the "total impression of speech quality" on a 10-point equal-appearing interval scale. Costs were measured from a societal viewpoint in Euro. RESULTS AND CONCLUSION: The IO group (n = 10) obtained a statistically significant higher rating, compared with the non-IO group (n = 10). The effect size was large, indicating that the improvement may be considered a clinically important change. The cost for treatment by the orthodontist was higher in the IO group. For both groups, the mean cost was related to the mean rating for "total impression of speech quality." The resulting cost-effectiveness for IO, compared to non-IO was 1041 for 1.34 point speech quality improvement. The financial investment that is necessary to obtain this improvement seems limited. Thus, from the perspective of speech development, the cost-effectiveness of IO over non-IO seems acceptable at this point in time.