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 1Berryman 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 1Berryman 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 1Berryman 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, CPBerryman 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 1Berryman 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 1Berryman 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
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