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Original article

Self- and parental assessment of quality of life in child cochlear

implant bearers
T. Razafimahefa-Raoelina a,∗ , A. Farinetti a , R. Nicollas a , J.-M. Triglia a ,
S. Roman a , L. Anderson b,c
a
Service ORL et chirurgie cervico-faciale pédiatrique, hôpital de la Timone Enfants, assistance publique–hôpitaux de Marseille, Aix-Marseille université,
264, rue Saint-Pierre, 13385 Marseille cedex 5, France
b
Service de santé publique et d’information médicale, hôpital de la Timone, assistance publique–hôpitaux de Marseille, 264, rue Saint-Pierre,
13385 Marseille cedex 5, France
c
SESSTIM (UMR 912, Inserm, IRD), faculté de médecine, Aix-Marseille université, 13273 Marseille, France

a r t i c l e i n f o a b s t r a c t

Keywords: Objectives: The aim of this study was to assess quality of life in children fitted with cochlear implants,
Cochlear implant using combined self- and parental assessment.
Quality of life Materials and methods: Thirty-two children, aged 6 to 17 years, with prelingual hearing loss and receiving
Children
cochlear implants at a mean age of 22 months, were included along with their families. The KIDSCREEN-
Parents
27 questionnaire was implemented, in face-to-face interview, in its parents and children-adolescents
Disability
versions, with 27 items covering physical well-being (“physical activities and health”), psychological well-
being (“general mood and feelings about yourself”), autonomy & parents (“family and free time”), peers
& social support (“friends”) and school environment (“school and learning”). Parent and child responses
were compared with a general population database, and pairwise.
Results: Global scores were compared against the general population on Cohen d effect-size. For child
self-assessment, the results were: physical well-being, 72.81 (d = 0); psychological well-being, 78.13
(d = −0.4); autonomy & parents, 63.84 (d = −0.2); peers & social support, 61.72 (d = −0.4); and school
environment 73.83 (d = 0). For parent assessment, the respective results were 62.66 (d = −0.8), 74.89
(d = −0.3), 57.37 (d = −1.2), 51.56 (d = −0.8), and 68.95 (d = −0.4). Half of the children could not answer
the questionnaire, mainly due to associated disability. Schooling and language performance were poorer
in non-respondent than respondent children. Quality of life was comparable between implanted and non-
implanted children: Cohen d, 0 to 0.4. Early cochlear implantation in children with pre-lingual hearting
loss provides quality of life comparable to that of the general population.
© 2015 Published by Elsevier Masson SAS.

1. Introduction Perception, Comprehension, Expression, Intelligibility (APCEI) pro-

Cochlear implantation (CI) has become a reference technique
for auditory rehabilitation in children with severe hearing loss.
Most studies of benefit in prelingual hearing loss focused on per-
ceptual and linguistic aspects. In these fields, early implantation
(before 3 years or even 15 months of age) is a positive predictive
factor [1–4].
Other studies have sought to assess impact on quality of
life (QoL) in children with severe hearing loss, using ques-
tionnaires. Most of the questionnaires, such as the Acceptance,
∗ Corresponding author.
E-mail address: raza.tantely@gmail.com (T. Razafimahefa-Raoelina).
file [5], Meaningful use of Speech Scale (MUSS) or Meaningful
Auditory Integration Scale (MAIS), comprise items essentially
assessing language development and hearing. According to the
WHO, however, QoL assessment should cover three dimensions:
physical, psychological and social. Few studies have measured QoL
on three dimensions such as experience of schooling, mood and
relations with parents [4,6,7]. Moreover, these few studies were
mainly based on parental assessment [8]. Only three articles could
be retrieved assessing QoL in CI children based on self- and parental
assessment. In the most recent of these, Meserole et al. [9] com-
pared QoL in CI versus normal-hearing children on this double
assessment. Parents of CI bearers had global scores that were com-
parable to or better than those of control parents representing
the general population (P < 0.01) on the Child Health and Illness

http://dx.doi.org/10.1016/j.anorl.2015.10.002
1879-7296/© 2015 Published by Elsevier Masson SAS.

Please cite this article in press as: Razafimahefa-Raoelina T, et al. Self- and parental assessment of quality of life in child cochlear implant
bearers. European Annals of Otorhinolaryngology, Head and Neck diseases (2015), http://dx.doi.org/10.1016/j.anorl.2015.10.002
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Profile-Child Edition QoL scale; the two modes of assessment, how-
ever, were not compared.
The present study therefore sought to measure QoL in prelin-
gual CI bearers on combined self- and parental assessment, using
the KIDSCREEN-27 tool [10]. This questionnaire explores the three
WHO dimensions and has been validated internationally. It enables
comparison between self- and parentally-assessed QoL and further
comparison with the general population.
2. Materials and methods
A single-center prospective study was performed between
November 2012 and May 2013 in the Hearing Loss Diagnosis and
Orientation Center of Marseille (France).
2.1. Population
The selected population comprised children with severe prelin-
gual congenital or acquired hearing loss implanted in a single center
before the age of 3 years and aged more than 6 years at assessment,
so as to be able to respond to the KIDSCREEN-27 questionnaire.
Schooling, communication and APCEI score were noted for all
patients. The APCEI profile [5], assesses the progression of global
performance in CI children, covering 5 domains: acceptance (A) of
the hearing aid or implant, aided auditory perception (P), compre-
hension (C) of perceived oral message (without lip-reading), oral
expression (E) and voice-use (syntax), and the child’s intelligibility
(I), on a 1-to-5 scale. The present study used the C, E and I domains
of the profile as being relevant to the assessment of oral language
level. The maximum score was thus 15.
2.2. KIDSCREEN-27 generic QoL questionnaire
KIDSCREEN-27 is an internationally validated questionnaire
[10], assessing QoL in comparison with a general population of the
same age group and in the same country. Each country has its own
control data based on 25,000 children and parents.
The particularity of KIDSCREEN is that it exists in a children-
Matched responses for child and parent(s), where available,
were compared on Student test to assess difference according to
point of view.
3. Results
Thirty-two of the 48 originally selected children (19 boys, 13
girls), aged 6 to 17 years (mean: 10 years) and implanted at a mean
22 months (range: 10–35 months), with a mean 4 years’ CI expe-
rience, were included along with their respective families. Table 1
presents general and school-related data, CEI score and etiologies.
In all, 32 parent questionnaires and 16 of the 32 child question-
naires could be collected (Table 2).
Responding children had a mean age of 10.5 years (range, 6.5–17
years); 11 boys, 5 girls; mean age at implantation, 23.75 months
(i.e. < 2 years). Four had genetic (25%) and 6 acquired etiology
(37.5%); for 6, etiology was undetermined (37.5%).
Table 2 shows the children’s global self-assessment results.
“Physical well-being” and “school environment” scores were
similar to those in the general population at matched age. Cohen d
effect-size was weak for the “autonomy & parents” score and weak-
to-moderate for “psychological well-being” and “peers & social
support”.
The 32 parents’ global scores (Table 3) differed from the gen-
eral population on all domains. Cohen d effect-size was weak for
“psychological well-being”, moderate for “school environment”
and strong for “autonomy and parents”, “physical well-being” and
“peers & social support”.
Comparison between self-assessment and the corresponding
parental scores found a tendency for parental underestimation on
4 of the 5 domains; this difference reached significance (P < 0.05)
for the “school environment” domain.
Schooling was classified in 3 categories (Fig. 1 and Table 1) on
the French national CI registry and Education Ministry classification
as normal, normal with support or specialized schooling (Table 1).
Table 1
Characteristics of the 32 children included.

adolescents (self-assessment) and a parent’s version. Its other Whole population

strong point is that it can be applied in a wide age range, from 8
Variable Number %
to 18 years; an age of 6 years is acceptable if the child’s capacities
permit. Gender
Male 19 59.4
KIDSCREEN-27 explores 5 dimensions: physical well-being (5 Female 13 40.6
items), psychological well-being (7 items), autonomy and parents Age at implantation
(7 items), peers and social support (4 items), and school envi- 0–1 years 2 6.3
ronment (4 items). Each item is scored on a 5-point scale, from 1–2 years 15 46.9
2–3 years 15 46.9
“never” to “always” or, depending on the question, “not at all” to
Etiology
“extremely”. Undetermined 10 31.3
Genetic 12 37.5
Connexin 26 4 12.5
2.3. Data collection and statistical analysis
Usher 3 9.4
Other 5 15.6
Questionnaires were mainly distributed and collected in face- Acquired 10 31.3
to-face interviews in the implantation center. There were two CMV 2 6.3
questionnaires per family: one for the child, and another filled out Meningitis 4 12.5
Delivery 4 12.5
by the two parents or the parent with custody. “Parent” and “child”
Schoolinga
questionnaires were filled out individually after explanations given Normal 6 18.8
to children and parents. Some children needed the help of a speech Normal with support 21 65.6
therapist to understand the questionnaire. Responses were collated Specialized 5 15.6
Mean CEI score/15 10.9
and compared to those of the French control populations [11].
The effect of the “CI” variable with respect to the general popula- a
Schooling was classified in 3 categories: normal: normal schooling with or with-
tion data was quantified by Cohen’s d effect-size [12], calculated by out care assistant; normal with support: normal schooling in classes or local units
adapted to include disabled children (classes avec inclusion scolaire [CLIS] or unité
dividing mean difference by standard deviation per variable: d > 0
localisée pour l’inclusion scolaire [ULIS]) with or without support from the family
indicated higher QoL in implanted than control subjects, and d < 0 education and schooling support service (service de soutien à l’éducation familiale et
the converse; d ≈ 0.2 represented a weak, d ≈ 0.5 a moderate and à la scolarisation [SSEFS]); specialized school: medico-social structure not part of the
d ≈ 0.8 a strong effect. national education system.

Please cite this article in press as: Razafimahefa-Raoelina T, et al. Self- and parental assessment of quality of life in child cochlear implant
bearers. European Annals of Otorhinolaryngology, Head and Neck diseases (2015), http://dx.doi.org/10.1016/j.anorl.2015.10.002
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Table 2
Overall results of the 16 children answering KIDSCREEN-27 (respondents).

Present study French norms Cohen d effect-size

8–11 years

n Minimum Maximum Mean SD Mean SD

Physical well-being score 0–100 16 55.00 95.00 72.81 14.83 72.81 17.84 0.0
Psychological well-beingscore 0–100 16 57.14 100.00 78.13 12.16 82.70 12.51 −0.4
Autonomy and parents score 0–100 16 32.14 85.71 63.84 16.80 66.88 19.75 −0.2
Peers and social support score 0–100 16 25.00 100.00 61.72 23.37 70.70 23.15 −0.4
School environment score 0–100 16 50.00 100.00 73.83 12.34 74.44 18.47 0.0

According to [15].
French norms, 8–11 years.

Table 3
Overall results of the 32 parents answering KIDSCREEN-27 parents version.

Present study French norms Cohen d effect-size

8–11 years

n Minimum Maximum Mean SD Mean SD

Physical well-being score 0–100 32 10.00 100.00 62.66 20.56 76.75 15.89 −0.8
Psychological well-beingscore 0–100 32 7.14 100.00 74.89 16.21 79.57 11.78 −0.3
Autonomy and parents score 0–100 32 21.43 85.71 57.37 15.61 74.82 14.63 −1.2
Peers and social support score 0–100 32 0.00 100.00 51.56 26.56 70.00 17.09 −0.8
School environment score 0–100 32 0.00 93.75 68.95 19.67 75.89 16.26 −0.4

According to [15].
French norms, 8–11 years.

Fig. 1 reports schooling in responders versus non-responders: the
former were in normal schooling with or without support, whereas
none of the latter was in normal schools.
4. Discussion
On the three dimensions of physical well-being, school environ-
ment and autonomy & parents, the present series resembled the
general population. The absence of motor disorder in respondent
children may explain why physical well-being scores were identi-
cal to controls. Similar findings were reported by Warner-Czyz et al.
[13], studying QoL in 50 CI children aged 4 to 7 years, using self-
and parental assessment on the Kiddy KINDL scale. This is a generic
scale assessing emotional well-being, family, friends, physical well-
being, school and social well-being. No significant differences were
found between CI children and the general population.
Regarding the dimension of schooling, children might be inte-
grated in normal schools, integrated with support, or be in special
schools (Table 1). Results showed that oral teaching relations were
good in most cases (mean global score, 73.83/100). Seventy percent
of parents responded with “very” or “extremely” to the question
“Has your child been happy at school?”; the corresponding rate
Fig. 1. Schooling according to the French national cochlear implant bearers registry,
of respondent and non-respondent children at time of study.
for the children was 87.5%. Three percent of parents thought their
child had not been happy “at all”, which none of the children
thought. This poorer parental assessment may be due to the dif-
ference between the “normal” school program and that actually
followed by deaf children and/or the difficulty certain teachers may
have in integrating a deaf child in their classes.
On the “Psychological well-being” and “Peers and social
support” dimensions, there was a moderate implant effect. Warner-
Czyz et al. [14] studied the relation between QoL and the auditory
history of CI children; there was a significant correlation between
longer CI experience and poorer QoL. In other words, while grow-
ing up with an implant, children increasingly realize the differences
between themselves and their normal-hearing peers. In the light
of these findings, it is easy to understand that implanted children
increasingly realize their difference as they get older. This could
explain the present findings on the “Psychological well-being” and
“Peers and social support” dimensions. Even so, Meserole et al. [9],
assessing QoL on the Health-Related Quality of Life (HRQOL) ques-
tionnaire filled out by children and parents for 129 CI bearers at
6 years post-implantation, reported similar QoL for implanted and
normal-hearing children.
The parental global score (n = 32) was lower than the chil-
dren’s, with moderate-to-strong Cohen d effect-size in most cases
(Table 3). Looking at individual items, the “Autonomy and parents”
scores were the lowest. Parents generally underestimated their
children’s quality of life in the present study. This is a generally
agreed phenomenon in public health, found in other studies of the
subject [9,13].
There are numerous reasons for such difference between the
children’s and the parents’ assessments. Interview disclosed a
certain feeling of parental guilt, especially in case of associated
disability or multiple disability. Moreover, parents more easily
compared their children to their normal-hearing pairs. Meserole
et al. [9] found QoL scores to be lower from parents than children;
they also compared parental QoL scores with a family stress score
and found greater family stress to correlate significantly (P < 0.01)
with lower QoL scores. They did not, however, compare parents’
and children’s scores, as in the present study.
Respondent children’s results were compared with those of
their parents: the latter were lower on each KIDSCREEN-27

Please cite this article in press as: Razafimahefa-Raoelina T, et al. Self- and parental assessment of quality of life in child cochlear implant
bearers. European Annals of Otorhinolaryngology, Head and Neck diseases (2015), http://dx.doi.org/10.1016/j.anorl.2015.10.002
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Table 4
General CEI score.
CEI Responders Non-responders
Minimum 9 1
Maximum 15 15
dimension, and significantly so on the “School environment”
dimension. One reason may be that concentration and the plea-
sure of being at school are not judged in the same way by parents
and children.
Unlike in other self- and parental assessment studies [13–17], all
children with prelingual hearing loss were included, regardless of
associated disability or disabilities. Two of the 16 non-respondent
children had learning difficulties that prevented them understand-
ing the questionnaire, and 4 failed to answer our request. Six of
the remaining 10 non-respondents had multiple disability (asso-
ciated motor disorders) and 4 had associated disability (visual or
behavioral).
Most non-respondents (12) thus had some incapacity preven-
ting understanding or answering the questionnaire; this was not
the case for any of the respondents.
Taking the APCEI score [5], or more precisely its CEI component,
as reference, the 16 respondents had a total of 203.5/240, versus
146/240 for the 16 non-respondents (Table 4). A CEI score > 9/15
generally allows oral language: respondents showed a mean 12.7,
versus 9.1 for non-respondents. Respondents had a mean age of
10.7 years, and a mean CEI score of 12.7; according to the refer-
ence data in the article by Noel-Petroff et al. [5], normal-hearing
children of this age have CEI scores between 12 and 15. Non-
respondents were younger, at a mean 9.1 years, with a mean
9.1 CEI score, compared to a normal-hearing score again of 12
to 15.
Fig. 1 shows that respondents had a better schooling profile
than non-respondents. Notably, no respondents were in specialized
schools.
There are few studies of QoL in CI children with associated dis-
orders [18–22]. Edwards et al. [19] performed one such study;
they note that, historically, children with multiple disability or
other disability creating additional needs were not considered good
candidates for cochlear implantation. Moreover, several studies
[20–22] reported poor progress in these cases as compared to
“usual” findings for such parameters as speech perception, intelligi-
bility and language acquisition (lexical field) compared to CI bearers
with isolated hearing loss. The benefit provided by CI in children
with multiple disability needs to be judged not strictly in terms of
hearing. Edwards et al. assessed QoL in CI children with associated
pathologies and/or disabilities (motor, cognitive, visual, etc.) ver-
sus isolated hearing loss. A questionnaire was sent to parents, with
items on communication and independence, emotional behavior,
global quality of life, etc.: 97% of parents of children with multiple
pathology reported quality of life to be increased “moderately” to
“very much”, compared to 95% of other parents. Budenz et al. [23]
compared results in CI children with isolated hearing loss versus
with comorbidities or associated abnormalities: the latter experi-
enced benefit with CI in terms of language and auditory perception,
but with slower progress (need for oral and non-oral stimulation
and gestural mimicry).
Studies of parents of children with multiple disability [18,21]
found CI to improve the child’s communication with parents and
also with the environment as a whole; the authors spoke of better
“connection” with the surrounding world.
Further studies are needed, notably in disabled CI children, to
assess their quality of life in terms of both communication and
social well-being.
Please cite this article in press as: Razafimahefa-Raoelina T, et al. Self- and parental assessment of quality of life in child cochlear implant
bearers. European Annals of Otorhinolaryngology, Head and Neck diseases (2015), http://dx.doi.org/10.1016/j.anorl.2015.10.002
5. Conclusion
The present study sought to extend the literature on quality of
life and early cochlear implantation. The results show that CI in the
first 3 years of life in children with prelingual hearing loss provided
QoL close to that of the general population. It also emerged that
parents underestimated their children’s QoL. CI is known to rein-
force language development and auditory perception (CEI score),
but it also seems more generally to improve quality of life, over
and above strictly linguistic considerations. CI benefit should be
assessed non-restrictively. The present results change our thinking
about complex indications and the ethical issues involved in CI in
multiple disability.
Disclosure of interest
The authors declare that they have no competing interest.
Acknowledgments
The authors thank Pr Auquier’s Public Health Department for
help with the study.
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Please cite this article in press as: Razafimahefa-Raoelina T, et al. Self- and parental assessment of quality of life in child cochlear implant
bearers. European Annals of Otorhinolaryngology, Head and Neck diseases (2015), http://dx.doi.org/10.1016/j.anorl.2015.10.002