Caregiver satisfaction survey results in a multidisciplinary cleft clinic

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Caregiver satisfaction survey results in a multidisciplinary cleft clinic
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
Caregiver satisfaction survey results in a multidisciplinary cleft clinic
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
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Australasian Journal of Plastic Surgery                                          28                                                 2021 Volume 4 Number 1
Berryman et al: Caregiver satisfaction survey results in a multidisciplinary cleft clinic                                       AJOPS | ORIGINAL ARTICLE

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Australasian Journal of Plastic Surgery                                          29                                              2021 Volume 4 Number 1
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