Hearing loss and quality of life in survivors of paediatric CNS tumours and other cancers

Abstract

Purpose
Hearing loss, a complication of cancer treatment, may reduce health-related quality of life (HRQoL), especially in childhood cancer survivors of central nervous system (CNS) tumours who often have multiple late effects. We examined the effect of hearing loss on HRQoL in young survivors of CNS and other childhood cancers.

Methods
Within the Swiss Childhood Cancer Survivor Study, we sent questionnaires about hearing loss and HRQoL (KIDSCREEN-27) to parents of survivors aged 8–15 years. We stratified the effect of hearing loss on HRQoL by cancer diagnosis, using multivariable logistic regression and adjusting for sociodemographic and clinical factors.

Results
Hearing loss was associated with impaired physical well-being [unadjusted estimated differences − 4.6 (CI − 9.2, − 0.1); adjusted − 4.0 (CI − 7.6, − 0.3)] and peers and social support [unadjusted − 6.7 (CI − 13.0, − 0.3); adjusted − 5.0 (CI − 10.5, 0.9)] scores in survivors of CNS tumours (n = 123), but not in children diagnosed with other cancers (all p-values > 0.20, n = 577).

Conclusion
Clinicians should be alert to signs of reduced physical well-being and impaired relationships with peers. Especially survivors of CNS tumours may benefit most from strict audiological monitoring and timely intervention to mitigate secondary consequences of hearing loss on HRQoL.

Full text

Vol.:(0123456789)
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Quality of Life Research
https://doi.org/10.1007/s11136-018-2021-2
BRIEF COMMUNICATION
Hearing loss andquality oflife insurvivors ofpaediatric CNS tumours
andother cancers
AnnetteWeiss1,2 · GritSommer1· ChristinaSchindera1,3· LauraWengenroth4· AxelKarow3· ManuelDiezi5·
GiselaMichel6 · ClaudiaE.Kuehni1,3 · Swiss Paediatric Oncology Group (SPOG)
Accepted: 2 October 2018
© Springer Nature Switzerland AG 2018
Abstract
Purpose Hearing loss, a complication of cancer treatment, may reduce health-related quality of life (HRQoL), especially
in childhood cancer survivors of central nervous system (CNS) tumours who often have multiple late effects. We examined
the effect of hearing loss on HRQoL in young survivors of CNS and other childhood cancers.
Methods Within the Swiss Childhood Cancer Survivor Study, we sent questionnaires about hearing loss and HRQoL (KID-
SCREEN-27) to parents of survivors aged 8–15years. We stratified the effect of hearing loss on HRQoL by cancer diagnosis,
using multivariable logistic regression and adjusting for sociodemographic and clinical factors.
Results Hearing loss was associated with impaired physical well-being [unadjusted estimated differences − 4.6 (CI − 9.2,
− 0.1); adjusted − 4.0 (CI − 7.6, − 0.3)] and peers and social support [unadjusted − 6.7 (CI − 13.0, − 0.3); adjusted − 5.0
(CI − 10.5, 0.9)] scores in survivors of CNS tumours (n = 123), but not in children diagnosed with other cancers (all p-val-
ues > 0.20, n = 577).
Conclusion Clinicians should be alert to signs of reduced physical well-being and impaired relationships with peers. Espe-
cially survivors of CNS tumours may benefit most from strict audiological monitoring and timely intervention to mitigate
secondary consequences of hearing loss on HRQoL.
Keywords Childhood cancer· Ototoxicity· Swiss Childhood Cancer Survivor Study· Swiss Childhood Cancer Registry·
Late effects· Cancer treatment
Introduction
Hearing loss, especially in the high frequencies, is an adverse
event of childhood cancer treatment, particularly after plati-
num chemotherapy or cranial radiation ≥ 30 Gray [1]. It is
often irreversible and can be uni- or bilateral [1]. Hearing
impaired children in the general population have lower health-
related quality of life (HRQoL) in domains of school activities
and social interactions, which are important for learning [2, 3].
The only study on hearing loss and HRQoL in young child-
hood cancer survivors is published more than 10years ago [4],
while cancer treatments constantly change. The study focused
on patients diagnosed with neuroblastoma (1989–1995)
Electronic supplementary material The online version of this
article (https ://doi.org/10.1007/s1113 6-018-2021-2) contains
supplementary material, which is available to authorized users.
* Claudia E. Kuehni
claudia.kuehni@ispm.unibe.ch
1 Swiss Childhood Cancer Registry, Institute ofSocial
andPreventive Medicine, University ofBern, Mittelstrasse
43, 3012Bern, Switzerland
2 Department forEpidemiology andPreventive
Medicine/Medicine Sociology, University ofRegensburg,
Franz-Josef-Strauss-Allee 11, 93053Regensburg, Germany
3 Division ofPediatric Hematology/Oncology, Department
ofPediatrics, Inselspital, Bern University Hospital,
University ofBern, Freiburgerstrasse 15, 3010Bern,
Switzerland
4 Institute andOutpatient Clinic forOccupational, Social
andEnvironmental Medicine, University Hospital ofMunich
(LMU), 80336Munich, Germany
5 Paediatric Haemato-Oncology Unit, Department
ofPaediatrics, University Hospital Lausanne (CHUV), Rue
du Bugnon 46, 1011Lausanne, Switzerland
6 Department ofHealth Sciences andHealth Policy, University
ofLucerne, Frohburgstrasse 3, 6002Lucerne, Switzerland

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without factoring in other comorbidities [4]. While hearing
loss can pose difficulties for any child, survivors treated for
central nervous system (CNS) tumours may suffer more from
hearing loss since they often have multiple late effects which
may reduce their social and educational skills [5]. Recently,
oncologists have become more aware of ototoxicity [6–8]. Sur-
vivors should be carefully monitored for audiological prob-
lems and offered timely and targeted interventions to help them
cope with hearing loss [9]. Audiological monitoring has not
yet been fully implemented for survivors in follow-up care
in Switzerland [8] and there are, currently, little data on the
effects of hearing loss on childhood cancer survivors.
We thus undertook a nationwide, population-based study
to examine the impact of hearing loss on HRQoL in children
who were recently treated for childhood cancers (1995–2010)
and focused on survivors of CNS tumours.
Materials andmethods
Study population
The Swiss Childhood Cancer Survivor Study (SCCSS)
The SCCSS is a population-based cohort of all children reg-
istered in the Swiss Childhood Cancer Registry (SCCR), who
were diagnosed since 1976, survived ≥ 5years after initial
diagnosis, and were alive at the time of the study [10]. The
SCCR includes all patients diagnosed at age < 21years in Swit-
zerland with leukaemia, lymphoma, CNS tumours, malignant
solid tumours or Langerhans cell histiocytosis [11]. Recent
estimates indicate that the SCCR includes 95% of those diag-
nosed since 1995 in Switzerland [12]. We included survivors
who were 8–15years old at survey, and diagnosed between
1995 and 2010. We traced addresses and sent their parents a
questionnaire in 2010–2016. Non-responders received a sec-
ond copy and then were reminded by phone or postal mailing.
Ethical approval was granted through the Ethics Committee
of the Canton of Bern to the SCCR and the SCCSS (KEK-BE:
166/2014).
Measurements
SCCSS Questionnaire Survey
Hearing loss Parents were asked if a doctor had told them
that their child had hearing problems (Supplemental Figure
S1). We coded missing answers (4%) as normal hearing.
HRQoL We assessed HRQoL with the KIDSCREEN-27
questionnaire for parents [13], which groups 27 items into
five dimensions of HRQoL: Physical well-being; psycholog-
ical well-being; autonomy; parents, peers and social sup-
port; and school environment. For each item, parents rated
their child’s HRQoL for the past week on a Likert Scale.
For each dimension, we calculated a Rasch score between 0
and 100 and used international norms to convert them into
T-scores (mean = 50; SD = 10). Higher scores indicate bet-
ter HRQoL. This instrument has satisfactory psychometric
properties [14–16] and has been used in childhood cancer
survivors [5, 15]. We used international norms as Swiss
norm data were only available for the German-speaking
regions [17] and 30% of our participants were from French-
or Italian-speaking regions.
Sociodemographics andchronic health problems The ques-
tionnaire also assessed sociodemographic data and chronic
health problems (Supplemental TableS1). For each survi-
vor, we created a sum score of cumulative disease burden by
adding the numbers of identified health problems.
SCCR
Clinical information included age at diagnosis; age at sur-
vey; gender; cancer diagnosis; chemotherapy; radiotherapy;
brain surgery; bone marrow transplant (BMT); and relapse
during follow-up time. We classified cancer diagnosis
according to the International Classification of Childhood
Cancer—3rd Edition [18].
Statistical analysis
We stratified our analyses for tumour types (CNS and non-
CNS cancers) since we found previously that survivors of
CNS tumour scored low on physical well-being [5], and
interaction tests showed that hearing loss had greater effect
on the HRQoL dimension peers and social support in sur-
vivors of CNS tumours (pinteraction = 0.005).
We used t-tests to compare the mean scores of the five KID-
SCREEN-27 dimensions of children with hearing loss to those
of children with normal hearing and to norm values. We did
this separately for children with CNS tumours and those with
other cancers. Among survivors of CNS tumours, those with
hearing loss had worse HRQoL for physical well-being and
peers and social support. For survivors of CNS tumours we
then tested if the association might have been confounded by
other factors, including sociodemographics, clinical character-
istics, cancer treatment, or other chronic health problems (Sup-
plemental TableS2) [19–21]. In multivariable linear regres-
sions, we included a priori age at survey and gender, and all
characteristics that had been significantly associated (p < 0.05)
with physical well-being and peers and social support in the
univariable models. Likelihood ratio tests determined statisti-
cal significance. We performed a sensitivity analysis includ-
ing those who completed hearing questions (n = 677) only

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and obtained similar results. We used Stata (Version 13, Stata
Corporation, Austin, Texas) to calculate Rasch- and T-Scores
and to perform all other analysis.
Results
Characteristics ofthestudy population
Of 976 parents contacted, 700 returned the questionnaire (72%
response rate, Supplemental Figure S2). Survivors of CNS
tumours (n = 123) were older at diagnosis (p < 0.001) and sur-
vey (p = 0.003), and had more often platinum chemotherapy,
cranial radiation, brain surgery, relapses, hearing loss, or more
than one health problem (all p < 0.001) than survivors of other
cancers (Tables1, 2, 3).
Hearing loss andHRQoL
In survivors of CNS tumours, hearing loss was associated with
poorer physical well-being (with hearing loss: T-score = 44 vs.
normal hearing: T-score = 48, p = 0.047) and peers and social
support (with hearing loss T-score = 40 vs. normal hearing:
T-score = 47, p = 0.040; Fig. 1). Differences remained after
adjusting for sociodemographic and clinical characteristics
Table 1 Sociodemographic characteristics of the study population
CNS central nervous system, n number, SD standard deviation
a p-values calculated from t-tests comparing survivors of CNS to survivors of non-CNScancers
b Column percentages are given
c p-values calculated from Chi-square tests comparing survivors of CNS to survivors of non-CNS cancers
d We classified participants who were not Swiss citizens at birth, not born in Switzerland, or had at least one parent who was not a Swiss citizen
as having a migration background
e We classified parental education into three categories: primary education (compulsory schooling only [≤ 9 years]), secondary education (voca-
tional training [10–13 years]), and tertiary education (higher vocational training, college, or university degree). If parents achieved different lev-
els of education, we selected the parent with the highest education
f Numbers and percentages are based upon available data
Study participants
CNS tumours n = 123 Non-CNS cancers n = 577
Mean (SD) Mean (SD) p-valuea
Age at survey, years 13 (2) 12 (2) 0.003
Sociodemographic characteristics n (%)bn (%)bp-valuec
Gender 0.100
Female 62 (50) 244 (42)
Migration backgroundd0.568
No 92 (75) 417 (72)
Yes 31 (25) 160 (28)
Language region of Switzerland 0.612
German speaking 90 (73) 400 (69)
French speaking 29 (24) 149 (26)
Italian speaking 4 (3) 28 (5)
Parental educatione, f 0.704
Primary 8 (7) 50 (9)
Secondary 77 (63) 346 (60)
Tertiary 34 (28) 163 (28)
Child lives with/inf0.784
Both parents 103 (84) 464 (80)
One parent and partner 7 (6) 38 (7)
One parent 12 (10) 67 (12)
Institution 1 (1) 2 (1)
Siblingsf0.237
No sibling 12 (10) 79 (14)
Has sibling(s) 109 (89) 488 (85)

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Table 2 Clinical characteristics of the study population
Italics value idicates the denominator of percentages is related to those with cranial radiation
CNS central nervous system, ICCC-3 International Classification of childhood cancer, n number, SD standard deviation
a p-values calculated from t-tests comparing survivors of CNS to survivors of non-CNScancers
b Column percentages are given
c p-values calculated from Chi-square tests comparing survivors of CNS to survivors of non-CNScancers
d Other malignant epithelial neoplasms, malignant melanomas and other unspecified malignant neoplasms
e Numbers and percentages are based upon available data
Study participants
CNS tumours n = 123 Non-CNS cancers n = 577
Mean (SD) Mean (SD) p-valuea
Age at diagnosis, years 5 (3) 3 (2) < 0.001
Sociodemographic characteristics n (%)bn (%)bp-valuec
Clinical characteristics
Diagnosis (ICCC-3) n.a
I Leukaemias – 273 (47)
II Lymphomas – 50 (9)
III CNS tumours 123 (100) 0 (0)
IV Neuroblastoma – 61 (11)
V Retinoblastoma – 38 (7)
VI Renal tumours – 51 (9)
VII Hepatic tumours – 12 (2)
VIII Bone tumours – 12 (2)
IX Soft tissue sarcomas – 46 (8)
X Germ cell tumours – 11 (2)
XI and XII Other rare tumoursd– 2 (1)
Langerhans cell histiocytosis – 21 (4)
Treatments
Chemotherapy < 0.001
Platinum 43 (35) 107 (19)
No platinum 8 (7) 415 (72)
Unknown platinum use 2 (2) 1 (1)
No chemotherapy 70 (57) 54 (9)
Cranial radiotherapy < 0.001
Yes, Graye32 (26) 46 (8)
1–29 3 (9) 30 (65)
≥ 30 27 (84) 13 (28)
No 91 (74) 531 (92)
Surgery < 0.001
Brain surgery 72 (59) 14 (2)
CSF-shunt 6 (5) 0 (0)
Both 26 (21) 0 (0)
Bone marrow transplantatione0.044
No 116 (94) 521 (90)
Yes 3 (2) 43 (7)
Relapse < 0.001
No 86 (70) 525 (91)
Yes 37 (30) 52 (9)

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and cumulative disease burden (estimated differences: physi-
cal well-being [unadjusted − 4.6; adjusted − 4.0]; peers and
social support [unadjusted − 6.7; adjusted − 5.0], Supplemen-
tal tableS2).
In contrast, survivors of other cancers had HRQoL com-
parable or higher than norm values in all dimensions, and
there was no evidence that hearing loss affected HRQoL (all
p> 0.05, Fig.1).
Discussion
Survivors of CNS tumours with hearing loss were more
likely to feel physically worse and to have poorer relation-
ships to peers than survivors with normal hearing or than
the international norm. In survivors of non-CNS cancers,
hearing loss was not associated with HRQoL.
Our study had both limitations and strengths. Although
we based our conclusion on parent-reported data [5,
21–24], validity of self-reported hearing loss was good
when compared to information from medical records [25,
26]. We had no data on hearing aids, though these may
affect HRQoL. A strength was the large population-based
sample of young, recently diagnosed survivors treated
according to the latest treatment protocols, and the com-
prehensive data available on cancer type, treatment and
other chronic health problems.
The only other study that investigated effects of hearing
loss on HRQoL in young survivors included 137 US neu-
roblastoma survivors (non-CNS cancer) [4], and found that
survivors with hearing loss were less functional in school,
Table 3 Health outcomes of the study population
Italics value idicates the denominator of percentages is related to
those with hearing loss
CNS central nervous system, n number
a Column percentages are given
b p-values calculated from Chi-square tests comparing survivors of
CNS to survivors of non-CNS cancers
Study participants
CNS tumours
n = 123
Non-CNS cancers
n = 577
n (%)an (%)ap-valueb
Hearing outcomes < 0.001
Normal hearing 98 (80) 533 (92)
Hearing loss 25 (20) 44 (8)
Severity of hearing loss 0.471
Mild 13 (52) 25 (57)
Moderate 8 (32) 9 (20)
Severe (deaf) 3 (12) 4 (9)
Unknown 1 (4) 6 (13)
Laterality of hearing loss 0.490
Unilateral 6 (24) 13 (30)
Bilateral 17 (68) 24 (55)
Unknown 2 (8) 7 (16)
Chronic health problems/
cumulative disease burden
< 0.001
0 32 (26) 331 (57)
1 30 (24) 141 (24)
2 28 (23) 70 (12)
3 or more 33 (27) 35 (6)
Fig. 1 Mean scores from
KIDSCREEN-27 comparing
survivors with hearing loss
and normal hearing strati-
fied by tumour type. Higher
scores indicate better HRQoL.
International norms have a sore
of 50 ± 10 (SD). p-values cal-
culated from t-tests comparing
survivors with hearing loss and
normal hearing. CI confidence
interval, CNS central nervous
system, p p-value
43.8
48.4
46.7
49.7
52.4
52.8
39.9
46.6
48.7
52.1
Physical well-being
Psychological wel
l-being
A
utonomy & parents
Peers & social support
School environment
30 35 40 45 50 55
CNS tumours
50.5
52.1
51.8
52.3
52.3
53.4
53.1
51.1
53.5
53.0
48 50 52 54 56
Non-CNS cancers
Mean scores from KIDSCREEN-27 with 95% Cls
p=0.047
p=0.040
Hearing loss
Normal hearin
g

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and had lower psychosocial functioning and overall HRQoL.
We found no effect of hearing loss in survivors of non-CNS
cancers. The US study did not adjust for chronic health prob-
lems common in survivors of neuroblastoma, which may
have confounded the association [6, 7]. A US study in adult
survivors (n = 406) reported a negative impact of hearing
loss on educational plans and social attainment in both sur-
vivors of CNS and non-CNS cancers [27]. It seems that the
vulnerability to hearing loss changes with increasing age as
in our study survivors of CNS tumours only were vulner-
able to hearing loss and other survivors could cope better
with hearing loss. In our study, survivors of CNS tumours
were treated more intensively and their burden of disabilities
was higher than in those of non-CNS cancers. This might
in return explain the low physical well-being in survivors of
CNS tumours, which is consistent with previous studies [5,
28]. The HRQoL dimension peers and social support was
particularly affected in survivors of CNS tumours. It might
be explained by the fact that they frequently suffer from
reduced neurocognitive functioning and sometimes have to
repeat a year in school [29].
Since audiological monitoring is only partly implemented
for survivors in Switzerland [8], health professionals should
pay careful attention to hearing problems and their effects in
survivors of CNS tumours. Future studies should investigate
if hearing aids or other interventions, including speech ther-
apy, frequency modulation amplification systems or prefer-
ential classroom seating, help reducing problems with peers.
Conclusion
Hearing loss reduces physical well-being and impairs rela-
tionships with peers in survivors of CNS tumours, but not in
other survivors, so clinicians should be alert to these prob-
lems in this vulnerable group. They may benefit most from
strict audiological monitoring and timely intervention to
mitigate secondary consequences of hearing loss on HRQoL.
Acknowledgements We thank all childhood cancer survivors and
families for participating in our survey. We thank the study team of
the SCCSS (Rahel Kuonen, Rahel Kasteler, Jana Remlinger, Laura
Wengenroth, Corina Rueegg, Cornelia Rebholz), data managers of the
SPOG (Claudia Anderegg, Pamela Balestra, Nadine Beusch, Rosa-
Emma Garcia, Franziska Hochreutener, Friedgard Julmy, Nadia Lanz,
Rodolfo Lo Piccolo, Heike Markiewicz, Annette Reinberg, Renate
Siegenthaler and Verena Stahel) and the team of the SCCR (Verena
Pfeiffer, Katharina Flandera, Erika Brantschen-Berclaz, Shelagh Red-
mond, Meltem Altun, Parvinder Singh, Elisabeth Kiraly). We thank
Kali Tal for her editorial suggestions. Swiss Paediatric Oncology
Group (SPOG) Scientific Committee: Prof. Dr. med. R. Ammann,
Bern; Dr. med. K. Scheinemann, Aarau; Prof. Dr. med. M. Ansari,
Geneva; Prof. Dr. med. M. Beck Popovic, Lausanne; Dr. med. P. Braz-
zola, Bellinzona; Dr. med. J. Greiner, St. Gallen; Prof. Dr. med. M.
Grotzer, Zurich; Dr. med. H. Hengartner, St. Gallen; Prof. Dr. med.
T. Kuehne, Basel; Prof. Dr. med. J. Rössler, Bern; Prof. Dr. med. F.
Niggli, Zurich; PD Dr. med. F. Schilling, Lucerne; Prof. Dr. med. N.
von der Weid, Basel.
Funding This study was supported by the Swiss Cancer League (Grant
Nos: 3412-02-2014, 3886-02-2016), the Stiftung für Krebsbekämp-
fung (www.krebs bekae mpfun g.c h), Kinderkrebs Schweiz (www.kinde
rkreb s-schwe iz.ch) and received funding from the European Union’s
Seventh Framework Programme for research, technological develop-
ment and demonstration under grant agreement no 602030. The work
of the Swiss Childhood Cancer Registry is supported by the Swiss
Paediatric Oncology Group (www.spog.ch), Schweizerische Konfer-
enz der kantonalen Gesundheitsdirektorinnen und -direktoren (www.
gdk-cds.ch), Swiss Cancer Research (www.krebs forsc hung.ch), Kinder-
krebshilfe Schweiz (www.kinde rkreb shilf e.ch), the Federal Office of
Public Health (FOPH) and the Institute of Cancer Epidemiology and
Registration (www.nicer .org). The funders of the Swiss Childhood
Cancer Registry support the daily running of the registry and have not
had and will not have any role in the design, conduct, interpretation,
or publication of the Swiss Childhood Cancer Registry itself as well
as the related research projects.
Compliance with ethical standards
Conflict of interest The authors declare that they have no conflict of
interest.
Ethical approval All procedures performed in studies involving human
participants accorded with the ethical standards of the institutional and/
or national research committee and with the 1964 Helsinki declara-
tion and its later amendments or comparable ethical standards. Ethics
approval was granted by the Ethics Committee of the Canton of Bern
to the SCCR and SCCSS (KEK-BE: 166/2014) and the SCCSS is reg-
istered at ClinicalTrials.gov (Identifier: NCT03297034).
Informed consent Informed consent was obtained from all participants
(parents and survivors) for registration in the SCCR and participation
in the SCCSS survey.
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