Caregiver satisfaction survey results in a multidisciplinary cleft clinic
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AJOPS | ORIGINAL ARTICLE CLP PUBLISHED: 31-03-2021 Caregiver satisfaction survey results in a multidisciplinary cleft clinic Zoe Berryman BDS,1 Peter Fowler BDS FRACDS PhD,1 Michelle Shand BN (CPIT),1 Martin Lee BDS MCommDent,1 Kirk Williams III MRCS FRACS (Plast)1 1 Canterbury District Health Board Abstract Christchurch Public Hospital Introduction: Orofacial clefts have a wide range of Christchurch NEW ZEALAND severity and can create functional and aesthetic issues for the affected individuals as well as influence OPEN ACCESS their social interactions and general happiness. The Correspondence aim of this research was to investigate how parents/ Name: Zoe Berryman caregivers score functional and aesthetic aspects of their child’s cleft and their child’s social interactions Address: Canterbury District Health Board and happiness. Christchurch Public Hospital Riccarton Avenue Method: Parents/caregivers attending the Christchurch 8140 Christchurch Cleft Clinic in New Zealand between NEW ZEALAND 2016 and 2019 were asked to complete a survey Email: zoe.berryman@cdhb.health.nz covering eight items—hearing, look of face, look of Phone: +64 (0)3 364 0640 teeth, speech, teeth issues, food or liquid coming out of the nose, social interactions, general happiness Citation: Berryman Z, Fowler P, Shand M, Lee M, Williams K. Caregiver satisfaction survey results in a multidisciplinary and a free-text comment section. Items were scored cleft clinic. Australas J Plast Surg. 2021;4(1):22–29. using a visual analogue scale. Descriptive statistics DOI https://doi.org/10.34239/ajops.v4n1.212 were performed on the data and qualitative analysis Manuscript received: 22 March 2020 of the free-text comments was conducted via Manuscript revised: 24 June 2020 thematic categorisation. The study was deemed an Manuscript accepted: 24 August 2020 out-of-scope audit from the New Zealand Health Copyright © 2021. Authors retain their copyright in the and Disability Ethics Committee; locality approval article. This is an open access article distributed under the was granted by the Canterbury District Health Board Creative Commons Attribution Licence 4.0 which permits (RO# 19069) and consent was obtained from all unrestricted use, distribution and reproduction in any participants. medium, provided the original work is properly cited. Results: A total of 226 completed surveys from Section: Cleft lip and palate 154 parents were assessed. Surveys that had any incomplete question (24) and/or had repeat submissions (72) were excluded, reducing the sample to 130 surveys. ‘Speech’, ‘look of the teeth’ and ‘teeth issues’ had the lowest (worst) mean scores. Negative functional issues relating to speech and fistulas were the most common free-text themes. Conclusion: Speech was a common concern for parents, emphasising the importance of speech language therapy as a key component in cleft treatment. Parental concerns regarding the look of their child’s teeth and teeth issues highlight the Australasian Journal of Plastic Surgery 22 2021 Volume 4 Number 1
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic AJOPS | ORIGINAL ARTICLE need for an interdisciplinary treatment approach. The based survey prior to their child’s appointment. inclusion of otolaryngology and psychology services This survey was used by cleft team clinicians to to improve issues that arise from hearing, social and determine the primary areas of concern and to emotional challenges is also recommended. ensure that any issues are addressed during the Keywords: cleft lip, cleft palate, surveys and cleft outpatient visit. In addition to the common questionnaires, speech, hearing functional and aesthetic issues affecting patients with cleft, questions regarding social interactions Introduction and general happiness were surveyed to improve Orofacial cleft occurs when embryonic facial understanding of the influence of orofacial cleft on processes fail to fuse during development. Cleft wellbeing. palate and cleft lip (with or without cleft palate) The aim of this research was to investigate how have been reported in approximately one in every parents/caregivers score functional and aesthetic 700 live births worldwide.1 However, a recent study aspects of their child’s cleft as well as their child’s conducted in New Zealand found the incidence of overall social interactions and happiness. This orofacial cleft to be slightly higher at one in 559 research was conducted to enable improvement to live births.2 cleft clinic services if indicated. Orofacial clefts have a wide range of severity and can create functional and aesthetic issues for the Methods affected individuals. As a result, children with A dataset from the clinic records was retrospectively cleft require coordinated interdisciplinary care accessed for those attending the monthly cleft including surgical and non-surgical interventions outpatient clinic from February 2016 to March that can extend from birth to early adulthood. 2019. The survey was developed primarily as a This treatment is provided by a wide range of communication aid between parents and cleft health professionals with the goal to establish as team professionals and was focused on similar key near normal functional and aesthetic outcomes as areas of concern that were advocated by the Cleft possible. However, it is evident in the literature Hearing Appearance and Speech Questionnaire that often functional and aesthetic challenges (CHASQ) that was being developed at that time. faced by children with cleft can have a significant Survey forms from parents/caregivers that had influence on their social interactions and general been uploaded to their child’s electronic clinical happiness.3–5 Although there has been an emphasis notes were included in this study. If there were on assessing various clinical outcome measures in repeat surveys, only one form was used for cleft care, more recently patient-reported outcome each child (the most recent form) and only fully measures (PROMS) have been given a high priority.6 completed forms were included. Survey forms The Christchurch Cleft Clinic (clinic) was were excluded if the child was older than 17 years, established in the 1960s and is a multidisciplinary had a noted syndrome or did not have an orofacial clinic for children with orofacial clefts involving cleft. specialist input from plastic, otolaryngologist This research was a mixed-methods study involving and oral and maxillofacial surgeons as well as both quantitative and qualitative analysis of the orthodontists, speech language therapists and paper-based survey used in the clinic. The survey paediatric dentists. Similar to other cleft clinics comprised eight items—hearing, look of face, look internationally, the concept of the clinic is based of teeth, speech, teeth issues, food or liquid coming on a holistic assessment of each patient’s needs, out of the nose, social interactions and general resulting in cohesive interdisciplinary decision happiness. The items were scored using a 100 mm making and treatment planning. visual analogue scale (VAS) that was rated from Over three years from 2016 to 2019, each attending poor (0 mm) to excellent (100 mm). Additionally, caregiver at the clinic was asked to complete a paper- the survey included a free-text comment section Australasian Journal of Plastic Surgery 23 2021 Volume 4 Number 1
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic AJOPS | ORIGINAL ARTICLE Christchurch Cleft Clinic To help us address any concerns at this appointment, please mark the line at the position you think your child’s outcomes are currently. Child’s Name: _________________________________ Date_____________ Hearing Poor Excellent Look of face Poor Excellent Look of teeth Poor Excellent Speech Poor Excellent Teeth issues Poor Excellent Food or liquid coming out of the nose All the time Never Social interactions Poor Excellent General Happiness Poor Excellent Comments: Fig 1. Christchurch Cleft Clinic survey form Australasian Journal of Plastic Surgery 24 2021 Volume 4 Number 1
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic AJOPS | ORIGINAL ARTICLE so that additional information, concerns and Table 1: Demographic data (age, sex, ethnicity) and cleft type questions could be added by the attending parent/ caregiver (Figure 1). Characteristic Number (%) De-identified demographic and clinical data for Total 130 (100%) each patient were entered into a Microsoft® Excel® Age (years) (version 2007, Microsoft Corporation, North Ryde, 0–5 43 (33%) NSW, 2113, Australia) spreadsheet. A score for each 6–10 44 (34%) item was determined by manually measuring the 11–17 43 (33%) distance of the mark along the scale. Descriptive Sex statistics were conducted on the data using STATA® Male 70 (54%) statistical software (StataCorp LLC, College Station, Female 60 (46%) Texas, United States of America). To determine the Ethnicity re-test reliability of the VAS, a sub-sample of 15 NZ European 87 (67%) attending parents/caregivers was asked to score Māori 21 (16%) two surveys approximately 30 minutes apart. Pacific 6 (5%) Spearman’s correlation demonstrated adequate re- Asian 7 (5%) test reliability (0.86). Other 9 (7%) Qualitative analysis of survey free-text comments Cleft type was conducted via thematic categorisation as per Cleft lip 28 (22%) Maykut and Morehouse, and Pope and colleagues.7,8 Cleft palate 64 (49%) Three researchers (ZB, MS, PF) independently Cleft lip and palate 38 (29%) conducted analysis and predominant themes were identified after consensus with the research group. The mean VAS for each of the eight items was The study was deemed an out-of-scope audit from calculated (Figure 2). Speech, teeth issues and look the New Zealand Health and Disability Ethics of teeth had lower mean scores, which represent Committee; locality approval was granted by the a higher degree of parent/caregiver concern. Food Canterbury District Health Board (RO# 19069) and or liquid coming out of the nose (that is, fistula) consent was obtained from all participants. and hearing were additional key issues of concern. Results There were significant differences (ANOVA, A total of 226 surveys from 154 parents/caregivers Scheffe post-hoc test) between cleft type (CL=cleft were collected for this study representing lip, CLP=cleft lip and palate, CP=cleft palate) for approximately 50 per cent of possible clinic hearing (p=0.033, CP
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic AJOPS | ORIGINAL ARTICLE Fig 2. Parent/caregiver mean item survey scores Table 2: Parental/caregiver free-text thematic classification and example comments Parental concerns Parental survey free text comments (n=107) Classification Example Positive experiences (n=25) Existing experience ‘X is a wee chatterbox, loves other kids and adults. Interaction at kindy is great. Some sounds he has trouble with especially first sounds in words but speaking in full sentences. Very happy.’ Improved experience ‘X’s speech is really doing well now.’ Social concerns (n=14) Relating to facial aesthetics ‘Other children have commented on the bump on his lip at school on a few occasions.’ Relating to social interactions ‘X has become more aware of how people (especially his peers) are seeing him. We are having moments of sadness due to what has been said because he sounds different/looks different.’ Procedural concerns (n=8) Questions related to surgery—‘tongue tie’, ‘feeding afterwards’, ‘speech afterwards’ Functional concerns (n=58) Relating to speech (n=28) ‘He can’t communicate well due to speech so gets angry quickly. At preschool they said his speech is behind and he can’t put a sentence together.’ Relating to hearing (n=9) ‘X has slight hearing loss in his left ear but not enough for me to notice’, ‘Didn’t realise he was having trouble hearing’ Relating to dental (n=14) ‘Only concern is teeth and the gap’, ‘No adult teeth in top yet’ Relating to fistula (n=16) ‘Fistula in roof of mouth not fixed during bone graft.’ Australasian Journal of Plastic Surgery 26 2021 Volume 4 Number 1
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic AJOPS | ORIGINAL ARTICLE Discussion In our study, teeth issues and look of teeth both Speech was a common area of parent/caregiver received relatively low mean item scores. Teeth concern in this study in both the qualitative and issues scoring may be related in part to the fact quantitative assessments. Hearing, look of face that New Zealand children with cleft have poorer and food or liquid coming out of the nose (fistula) dental health status than general population-based differed by cleft type in the expected clinical data at age five years.19 It should also be noted that direction.10–12 although a small proportion (14.3%) in a study of UK children with cleft were reported to be Our study did, however, have several limitations. dissatisfied with the looks of their teeth,4 parents/ These include the lack of a non-cleft control group, caregivers tend to rate the aesthetic concerns of the lack of validation of the items used within their child’s teeth as more severe than the child our survey (which prevented us from performing themselves.20 It was interesting to note that our linear regression analysis) and the absence of qualitative findings also suggest that dental issues clinical-based outcome measures.13 Despite this, are of particular concern to parents. self-reported ratings of common cleft-related items associated with function and aesthetics could be The literature supports the concept that social considered valuable as these reflect everyday interaction and general happiness of children with experiences for that individual. cleft are strongly associated.21–23 It is important to note, however, that any association between Visual analogue scale has been shown to have social interaction and general happiness is satisfactory reproducibility and correlates well complex and further research is required to with health-related measures similar to those used understand the individual factors that contribute in our study for children with orofacial cleft.14,15 to these surrogate markers of wellbeing.23 Antia Additional strengths of this study were the ability and colleagues found that although children who to analyse both quantitative and qualitative aspects are deaf or have hearing impairments tend to of parent/caregiver concerns and the sample size, initiate social interactions at a similar frequency although an improved responder rate would have to children with no hearing impairment, they are benefited the study. less likely to thrive in these interactions. It was also The relatively low scoring for speech and the number found to be more challenging for these children of concerns raised in the parent/caregiver free- to maintain interactions, as hearing is required to text comments relating to speech were important reciprocate in most social circumstances.24 Recently findings of this study. Access for advanced hospital- an otolaryngologist surgeon has joined the clinic based speech assessments and surgical intervention team, and this specialist input will hopefully help are generally unrestricted and dealt with on an address concerns related to hearing. as-needed basis. Although similar findings related Previous research has also reported that patients to speech were noted in other international with cleft are negatively evaluated based on studies,3,16,17 the findings of this study may reflect their appearance.25 Consequently, clefts that are the perceived under-resourcing of speech language visible extra-orally are likely to impact on social therapy, which has been an ongoing concern raised interactions. Tobiasen and Hiebert assessed the by the New Zealand Cleft Support Group.18 In New response of children and young adults when Zealand there is no priority given for children with looking at photographs of cleft lip and palate cleft to access ongoing speech therapy within the patients. They found that faces with more severe community where speech therapy is funded by the cleft impairments were seen as being less socially Ministry of Education. Although short, intensive desirable than faces with moderate impairments.25 hospital-based speech therapy can be provided by Similarly, another study by Shaw had participants the Ministry of Health via the respective district rate photographs of patients with normal incisors, health boards, there are constraints in the provision cleft lip, crowded incisors, absent lateral incisors of this care. Australasian Journal of Plastic Surgery 27 2021 Volume 4 Number 1
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic AJOPS | ORIGINAL ARTICLE and prominent incisors. They reported that Disclosure participants rated those with an aesthetic dental The authors have no financial or commercial and facial appearance as more socially desirable, conflicts of interest to disclose. more intellectual and less likely to exhibit aggressive behaviour.26 References 1 Mossey PA, Modell B. Epidemiology of oral clefts 2012: an It is clear when evaluating the literature that international perspective. Front Oral Biol. 2012;16:1–18. patients with orofacial cleft face social and https://doi.org/10.1159/000337464 PMid:22759666 emotional challenges related to their condition. 2 Thompson J, Stone PR, Sanders M, Borman B, Fowler PV. One study reported 25 per cent of children with The incidence of orofacial cleft in live births in New Zea- cleft indicated that they had been teased about land. NZ Med J. 2016;129(1440):64–71. PMid: 27538040 3 Noar JH. A questionnaire survey of attitudes and concerns their cleft and over half conveyed that their of three professional groups involved in the cleft palate confidence and ability to find a partner had been team. Cleft Palate Craniofac J. 1992;29(1):92–95. https://doi. impacted.4 However, the psychosocial impact of org/10.1597/1545-1569_1992_029_0092_aqsoaa_2.3.co_2 cleft lip and palate on an individual is difficult https://doi.org/10.1597/1545-1569(1992)029-2.3.CO;2 to assess given its complexity and variation 4 Noar JH. Questionnaire survey of attitudes and concerns of patients with cleft lip and palate and their parents. among studies. 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[Cited 1 February 2020]. Available from: http://archive.stats. govt.nz/Census/2013-census/profile-and-summary-reports/ Conclusion quickstats-culture-identity.aspx 10 Yang AS, Richard BM, Wills AK, Mahmoud O, Sandy JR, This study found that speech was a common Ness AR. Closer to the truth on national fistula prevalence functional concern for parents/caregivers of after unilateral complete cleft lip and palate repair? The children with cleft attending the Christchurch Cleft cleft care UK study. Cleft Palate Craniofac J. 2020;57(1):5–13. Clinic, along with the look of teeth and teeth issues. https://doi.org/10.1177/1055665619858871 PMid:31248277 The findings support the need for interdisciplinary 11 Hall A, Wills AK, Mahmoud O, Sell D, Waylen A, Grewal S, Sandy JR, Ness AR. Centre-level variation in outcomes and care, where speech language therapy should be well treatment for otitis media with effusion and hearing loss resourced as a key focus in cleft services along with and the association of hearing loss with developmental dental services. Cleft care healthcare providers outcomes at ages 5 and 7 years in children with non-syn- should also consider active otolaryngology and dromic unilateral cleft lip and palate: the cleft care UK study, part 2. Orthod Craniofac Res. 2017;20(2):8–18. https:// psychology input to ameliorate issues that arise for doi.org/10.1111/ocr.12184 PMid:28661080 children with cleft. Australasian Journal of Plastic Surgery 28 2021 Volume 4 Number 1
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