Julia Friedrich, RWTH-Aachen, Diplomstudiengang der Lehr- und Forschungslogopädie
0241-1607475
Quality of life (QOL)
in children with cochlea implant
Background:
The number of patients with CI is increasing
steadily. Nowadays more than 2/3 of the overall implantations are carried out
in the pediatric area. The success of implantations is mainly measured by
objective assessments, e.g. measuring hearing abilities, speech and language
development and educational attainment. Those factors are seen as the prime parameters
of evaluating CI-efficiency (Diller, 2000; Gantz, Tyler, Woodworth,
1994; McDonnald
Connor, Hieber, Arts, Zwolan,
2000; Miyamoto, Iler Kirk, Svirsky, Seghal, 2000). Only during the late 90th
evaluations started focussing more on QOL factors (Beadle, Shores, Wood, 2001; Carter & Hailay, 1995; Cheng, Rubin, Powe, Mellon,
Francis, Niparko, 2000; Chmiel
Sutton, Jenkins, 2001; Illg,
v.d. Haar-Heise, Battmer, Horsch, Lenarz, 1999; Kelsay, Tyler, 1996; Rodeck, Mendler, Schlenker-Schulte, Rasinski, Vorwerk,
Fogarasi, 2005). But those were
mainly linked with economic efficiency in order to justify the high costs of intervention and
rehabilitation which follow after an implantation. The evaluation of the children’s’
point of view is primarily done by parents and health carers/therapists because
no assessments as yet have included a comprehensive questionnaire of QOL for
German-speaking children with CI.
However, more and more the client’s opinion is
taken into account to deduce appropriate intervention programs and to estimate
the overall efficiency of treatment (Bullinger & Ravens-Sieberer, 1995;
Ravens-Sieberer & Cieza, 2000; Spieth & Harris, 1996).
Information about the QOL of CI-children might
help to get an overall picture about the influencing factors which play an
important role after the operation and when planning appropriate intervention programs (Beadl
et al., 2001; Chmiel et al., 2001).
Aim/subjectives:
The study was administered to asses the
self-evaluation of QOL in German-speaking CI-children by using a newly designed
questionnaire.
Another aim is to compare the outcomes with the
parental and health carer’s perspective by using additional questionnaires.
Finally, the findings are used for a first
evaluation of the questionnaire’s overall validity.
Method:
Material
A questionnaire specifically for
German-speaking school-children (starting at the age of 6) with CI was
developed. The questionnaire comprises 21 questions which are designed as
declarative sentences (e.g. last week I liked my appearance having a CI). The
questions area supposed to represent functional, communicative and psychosocial
aspects of daily life. They refer to the children´s experience and behaviour
one week before conducting the survey. A 4-level- scale is used to measure QOL
(0 = never, 1 = rarely, 2 = often, 3 = always/frequently). Scores of 2-3 are
defined as showing high QOL, scores of 0-1 mirror low QOL.
By adding all single scores an overall score is
calculated. High scores represent a high QOL, low scores accordingly picture a
low QOL. The maximum score is 63.
The questionnaire comprises 2 additional
questions about satisfaction with the CI and about the child’s subjective hearing
evaluation. Because of the questions´ specification they were interpreted
separately and were excluded from the main data analysis.
For every group (children, parents, health
carers) a 3 different format of the questionnaire were designed.
Participants:
12 children were assessed. One child had to be
excluded because of comprehension problems. Despite additional explanations the
child was not able to understand the given task and to accordingly answer the
questions. Therefore a group sample of 11 participants remained (5 boys, 6
girls). Regarding age, age of beginning deafness, age at implantation and
CI-provision time the group was very heterogeneous. The age range was 6;11 to
15;4 years(MD 9;8), age at implantation differed from 1;3-11;6 years (MD 4;6)
and the CI-provision time was between 1;5 and 8;1 years (MD 5;3). The onset of
deafness of 5 children was detected during the first year of life. 2 children
became deaf during their 7th and 8th year of life. Most
children had unidentified etiologies of deafness (n = 8). One child became deaf
suffering from meningitis at the age of 8 and one child suffered from a
perinatal hearing loss.
The parental questionnaire was answered by 11
mothers and 1 father, the health carer questionnaire was completed by 2 speech
and language therapists and 1 audiologist.
Procedure:
The survey was conducted at a rehabilitation
centre within the scope of a routine check-up. The children were asked to
complete the questionnaire while the examiner was present. If required the
examiner gave explanations or conducted an interview to complete the
questionnaire in cooperation with the child. Parents and health carers answered
the questions independently.
Analysis:
Using median scores the outcomes from all 3
groups (children, parents, health carers) were compared to each other.
Analysing ordinal data a nonparametric test was chosen to measure correlations
(Spearman´s correlation). Significant differences between children (Alpha: 5%),
parents and health carers were assessed by using sum scores and comparing
rankings between the subgroups. A remarkable discrepancy could be measured by a
difference of 12 scores. Significant differences were observable at a sore
difference of 16 or more.
The two factors CI-provision time and age were
combined and taken into account regarding the overall analysis. Therefore the
sample was divided into two groups, the “short-CI-provision-time group” and the
“long-CI-provision-time group” (see table 1 and 2).
table 1: children
with short CI-provision time (group 1)
|
group 1 children |
K 10 |
K 8 |
K 6 |
K 1 |
K 9 |
||
|
CI-TD/ LA % |
13,60% |
15,30% |
20,10% |
38% |
40,90% |
||
comments:
CI-TD/ LA% = CI-provision time related to age in percent; K = child
table 2: children
with long CI-provision time (group 2)
|
group 2 children (n = 6) |
K 7 |
K 2 |
K 5 |
K 11 |
K 12 |
K 4 |
|
|
CI-TD/ LA % |
55,10% |
55,40% |
58,60% |
69,20% |
82,70% |
86,10% |
|
comments:
CI-TD/ LA% = CI-provision time related to age in percent; K = child
Possible group differences were analysed by
using an independent t-test.
Additionally the questionnaire was evaluated
regarding its internal validity by using Cronbach’s Alpha.
Results:
The children needed approximately 5-10 minutes
to answer the questions. 7 children completed the questionnaire independently,
4 children showed weak reading comprehension skills and were assisted to answer
the questions.
Internal consistency
of the questionnaire:
The analysis of internal consistency showed a
score of .381 for the children and a score of .664 for the parents indicating a
low to median consistency of the questions.
Evaluation of QOL:
Both, parents and children, showed high scores
regarding the evaluation of QOL (median = 2). The maximum score was 3.
Therefore a median of 2 was regarded to mirror a high QOL. Both groups used the
full range of possible scores (0-3). Looking at the median score of every
single child separately, even higher evaluations are observable (table 3).
table 3:
the children’s individual median-score (min-max)
|
children (n=11) |
K 1 |
K 2 |
K 4 |
K 5 |
K 6 |
K 7 |
K 8 |
K 9 |
K 10 |
K 11 |
K 12 |
|
QOL-score (min-max) |
3 (0-3) |
2 (0-3) |
2 (0-3) |
3 (1-3) |
3 (0-3) |
3 (0-3) |
3 (0-3) |
3 (0-3) |
2 (0-3) |
3 (0-3) |
2 (0-3) |
comment: K = children
The maximum score of 3 was less often chosen by
the parents (table 4).
table 3:
the parents’ individual median-score (min-max)
|
parents (n=11) |
M 1 |
M 2 |
M 4 |
M 5 |
M 6 |
M 7 |
M 8 |
M 9 |
M 10 |
M 11 |
M 12 |
|
QOL-score (min-max) |
2 (0-3) |
3 (0-3) |
3 (1-3) |
2 (0-3) |
2 (1-3) |
2 (0-3) |
3 (0-3) |
2 (0-3) |
2 (0-3) |
2 (0-3) |
3 (0-3) |
comments:
M = parents
Group comparisons (t-test) showed no significant
differences between children’s and parents´ evaluation taking into account CI-
provision time and age (table 5).
table 5: t-test results and median-scores of
QOL-rating of both CI-provision-time groups
|
|
children |
parents |
|
group 1 (n=5) median range |
3 2-3 |
2 2-3 |
|
group 2
(n=6) median range |
2,5 2-3 |
2,5 2-3 |
|
t-test |
t= 1.147 p= 0.281 df= 9 |
t= - 0.669 p= 0.521 df= 9 |
comments: group 1 = short time of
provision; group 2 = long time of provision
Comparisons of the median indicated high
QOL-scores and high agreement between the group of children and the group of
parents.
Because no group differences between children
and parents regarding CI-provision time were observable they were treated as
one group to measure possible correlations. The analysis showed a weak and
negative correlation between parents and children (r = -.366). Using rankings a
more in depth analysis between children and parents were administered (table
6). 3 twosomes (child-parent) showed a distinct, 2 an even significant
difference of sum scores.
Therefore, just a rather weak correlation
between the family members was observable. The arrows in table 6 visualize
those immense differences between the QOL-scores of children and parents (e.g.
the arrow between K4 and M4 indicates a significant difference, whereas the
arrow between K8 and M8 shows a very small difference).
table 6: relationship between the range of
sumscores ( K = children, M = parents)
|
diff |
range |
score |
child |
parent |
score |
range |
|
d |
1 |
51 |
|
M 4 |
56 |
1 |
|
|
2 |
50 |
|
M 2 |
51 |
2 |
|
d |
3 |
49 |
|
M 6 |
50 |
3 |
|
|
4 |
48 |
|
M 12 |
50 |
3 |
|
|
4 |
48 |
K 6 |
M 8 |
49 |
4 |
|
|
5 |
47 |
|
M 10 |
45 |
5 |
|
|
5 |
47 |
|
M 5 |
42 |
6 |
|
sig |
6 |
40 |
K 4 |
M 7 |
41 |
7 |
|
|
6 |
40 |
K 10 |
M 9 |
41 |
7 |
|
d |
7 |
37 |
K2 |
M 11 |
39 |
8 |
|
sig |
8 |
34 |
K 12 |
M 1 |
34 |
9 |
comments:
d = distinct, sig = significant; diff = difference
Except one pair, the ranking between children
and health carers showed no distinct differences. The overall median of health
carers was 2, also implying a high score of QOL. The correlations both between
children and health carers and health carers and parents were weak (r = .051, r
= -.069).
Discussion:
The results indicate that all groups (children,
parents, health carers) rated the overall QOL of the children as high. These findings
correspond with other studies which reveal a high rating of QOL in CI-children
and adolescents (Chmiel et al., 2001; Illg et al., 1999; Preisler, Tvingstedt,
Ahlström, 2005; Rodeck et al., 2005). Based on those results the CI seams to
have a positive impact on the functional, psychosocial und communicative well-being
on children.
A potential predictor might be the length of implant
use related to the child’s age. But the comparison between the two CI-provision-time
groups didn’t support this hypothesis.
The comparison of the medians suggests a high
level of consistence between the rating groups. However, these findings get no
support from the correlation analysis. The comparison of the real pairs of
child and parent shows a clear difference between 5 of 11 child-parent-pairs.
The week correlations between the rating groups
and the differences in the scores of children and parents raise the question
about which factors could be responsible for the different estimations of QOL.
Due to sample size and the limitations of the questionnaire
profound interpretation is restricted. Nevertheless, the current results are
supported by findings of former studies, which reveal similar results on the
comparison of self- and proxy- estimation (Cmiel et al. 2000; Illg et al., 1999).
Chmiel et al. revealed differences in expectations and aspects of satisfaction.
Hence, the different outcomes of the estimation could be based on non-communicated
differences in the perception on the child’s QOL.
Discrepancy in
the estimation of QOL can also be observed between parents and health carers. This
emphasizes the necessity to improve the communication between all groups (Hintermair, 2006;
van Eldik; Treffers, Veerman,
Verhulst, 2005).
All perspectives should be taken into account
to comprehensively evaluate the child’s QOL. In this context the child’s
perspective is particularly crucial (Preisler et al., 2005).
Future perspective:
The questionnaire could be used as a tool
within the clinical context. It could help to integrate all perspectives (e.g. children,
parents, teachers, health carers) in order to define commonly agreed aims of intervention.
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