Preferences for follow-up care 1
Published in European Journal of Cancer Care 2016
(DOI: 10.1111/ecc.12560; final version before proof)
Preferences for long-term follow-up care in childhood cancer survivors
Gisela Michel (PhD)1,2, Micòl E. Gianinazzi (PhD)1, Christine Eiser (PhD)3, Eva Bergstraesser (MD
MSc)4, Janine Vetsch (MSc)1, Nicolas von der Weid (MD)5, Claudia E. Kuehni (MD MSc)2 , For the
Swiss Paediatric Oncology Group*
1
Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002 Lucerne,
Switzerland
2
Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012 Bern, Switzerland
3
Department of Psychology, University of Sheffield, Western Bank, Sheffield S10 2TP, United Kingdom
4
Department of Paediatric Oncology, University Children's Hospital, Steinwiesstrasse 75, 8032 Zurich, Switzerland
5
University Children's Hospital beider Basel (UKBB), Spitalstrasse 33, Postfach, 4031 Basel, Switzerland
* Swiss Paediatric Oncology Group (SPOG) Scientific Committee: Prof. Dr. med. R. Ammann, Bern; Dr. med. R.
Angst, Aarau; Prof. Dr. med. M. Ansari, Geneva; PD Dr. med. M. Beck Popovic, Lausanne; Dr. med. P. Brazzola,
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. K. Leibundgut, Bern; Prof. Dr. med. F. Niggli, Zurich; PD Dr. med.
J. Rischewski, Lucerne; Prof. Dr. med. N. von der Weid, Basel.
Corresponding author:
Gisela Michel, Department of Health Sciences and Health Policy, University of Lucerne
Frohburgstrasse 3, 6002 Luzern, Switzerland
Ph:+41 41 2295955, Fax: +41 41 2295635, E-mail: gisela.michel@unilu.ch
Sources of support:
This work was supported by the Swiss National Science Foundation (Ambizione grant PZ00P3_121682/1 and
PZ00P3-141722 to GM; Grant 100019_153268 / 1). The Swiss Childhood Cancer Survivor Study was funded by the
Swiss Cancer League (KLS-2215-02-2008, KFS-02631-08-2010, KLS-02783-02-2011). The work of the Swiss
Childhood Cancer Registry is supported by the Swiss Paediatric Oncology Group (www.spog.ch), Schweizerische
Konferenz der kantonalen Gesundheitsdirektorinnen und –direktoren (www.gdk-cds.ch), Swiss Cancer Research
(www.krebsforschung.ch), Kinderkrebshilfe Schweiz (www.kinderkrebshilfe.ch), Ernst-Göhner Stiftung, Stiftung
Domarena and National Institute of Cancer Epidemiology and Registration (www.nicer.ch).
Preferences for follow-up care 2
ABSTRACT
Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of
late-effects. We aimed to describe preferences for different organisational aspects and models of followup care among Swiss childhood cancer survivors, and characteristics associated with preferences for
different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16
years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously
participated in a baseline survey. They received questionnaires to assess attendance and preferences for
follow-up (rated on 4 point scales, 0-3). Clinical information was available from the SCCR. Survivors
(n=314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher
than supportive reasons (p<0.001). They rated checking for cancer recurrence (mean=2.78, SD=0.53) and
knowing about risks for my children most important (mean=2.22, SD=0.83). They preferred to attend a
children’s hospital (mean=1.94, SD=1.11), adult hospital (mean=1.86, SD=0.98) or general practitioner
(mean=1.86, SD=1.01) rather than a central specialised late effects clinic (mean=1.25, SD=1.06, p<0.001),
and be seen by paediatric (mean=2.24, SD=0.72) or medical oncologist (mean=2.17, SD=0.69). Survivors
preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic.
Survivors’ preferences should be considered to ensure future attendance.
Keywords: oncology, survivors, aftercare, patient preference, organization
INTRODUCTION
Follow-up care is vital for many childhood
cancer survivors due to the high risk of late
effects (Geenen et al., 2007, Hudson et al., 2013,
Oeffinger et al., 2006). Follow-up offers
potential for early detection and treatment of late
effects and an opportunity to offer ageappropriate information about disease, treatment
and a healthy lifestyle, practical advice about
insurance, education or work, and psychosocial
support (von der Weid and Wagner, 2003,
Gianinazzi et al., 2014, Vetsch et al., 2015).
Published guidelines describe risk-based followup for childhood cancer survivors (Scottish
Intercollegiate Guidelines Network (SIGN),
2004, Stichting Kinderoncologie Nederland
(SKION), 2010, Children's Oncology Group,
2013), and evidence-based, risk-adapted
examinations. Despite the potential advantages
of follow-up, attendance is often low (Michel et
al., 2011b, Rebholz et al., 2011, Essig et al.,
2012).
Previous studies highlighted the importance of
assessing survivors’ views and preferences about
follow-up care (Aslett et al., 2007, Earle et al.,
2005, Michel et al., 2009) to ensure it is relevant
to survivors and consequently associated with
good attendance. However, little is known about
survivors’ views of follow-up. They appear more
interested in medical aspects of follow-up care
such as checking for relapse, late effects and
general health status, compared with gaining
information about wider issues such as effects of
cancer on employment or education, or health
behaviour (Michel et al., 2009, Eiser et al.,
1996). Organisational issues such as waiting
time or length of consultation influenced
satisfaction with care (Absolom et al., 2006).
Other work has addressed preferences for
different models of follow-up care (e.g.
continuation of care with the paediatric
oncologist, transfer to adult clinic or general
practitioner
(GP),
or
follow-up
by
telephone/questionnaire). Most survivors were
satisfied with the care they received (Eiser et al.,
1996, Michel et al., 2011a), and wished to
continue this model of follow-up (paediatric or
adult clinic) (Absolom et al., 2006, Michel et al.,
2009). Two qualitative studies concluded that
GP follow-up was convenient but survivors were
not confident about GPs knowledge about
survivorship-specific care (Zebrack et al., 2004,
Earle et al., 2005). However, most studies only
included
survivors
attending
follow-up
appointments and therefore may not be relevant
when considering views of survivors who do not
attend follow-up care for whatever reason.
We aimed to describe 1) preferences for different
organizational aspects and models of follow-up
care among Swiss childhood cancer survivors
Preferences for follow-up care 3
(including both current attenders and nonattenders to follow-up care), and 2)
characteristics of survivors associated with
preferences for different models of care.
METHODS
Sample and procedure
The Swiss Childhood Cancer Registry (SCCR) is
a population-based registry including all Swiss
residents diagnosed before age 21 years with
leukaemia, lymphoma, central nervous system
(CNS) tumour, malignant solid tumour or
Langerhans cell histiocytosis (Michel et al.,
2007, Michel et al., 2008). The Swiss Childhood
Cancer Survivor Study (SCCSS) is a nationwide,
long-term follow-up study of all patients
registered in the SCCR who were diagnosed
between 1976-2005 and survived for ≥5 years
(Kuehni et al., 2012a).
For the baseline survey, between 2007-2009, all
survivors aged older than 16 years at study
received an information letter about the study
from their treating institution. They were asked
whether or not they wished to participate, their
address, or if they required the baseline
questionnaire in another language (German,
French, and Italian). Two weeks later, all
survivors received a paper-based questionnaire
(baseline) with a prepaid return envelope. Nonresponders received another questionnaire after 2
months and then were contacted by phone if they
did not respond.
After approximately 3 years all participants who
had completed the baseline questionnaire, were
aged ≥18 years, and diagnosed with cancer at
age ≤16 years between 1990-2005, received a
follow-up questionnaire. Non-responders to this
questionnaire were sent a reminder letter with a
questionnaire and prepaid return envelope two
months later. Because there were few Italian
speaking participants, the second questionnaire
was provided only in German and French. For
the current study survivors whose parents
completed the baseline questionnaire were
excluded.
Ethics approval was provided through the
general cancer registry of the SCCR (The Swiss
Federal Commission of Experts for Professional
Secrecy in Medical Research) and a non obstat
statement (the ethical committee did not object
to the running of the study) was obtained from
the ethics committee of the canton of Bern.
Participants gave informed consent for the study
by returning the completed questionnaire.
The questionnaires
The baseline questionnaire was based on those
used in the US and UK childhood cancer
survivor studies (Robison et al., 2002, Hawkins
et al., 2008), and covered the following topics:
quality of life, somatic health, current
medication,
health
service
utilization,
psychological distress, health behaviour and
socio-economic information. The focus of the
follow-up questionnaire was follow-up care and
psychological outcomes.
Measurements
Baseline questionnaire
We assessed sex, migration background and selfreported late effects. We coded participants as
having a migration background if they were not
Swiss citizens, were not born in Switzerland, or
at least one parent was not a Swiss citizen. We
asked if survivors experience late effects from
cancer or treatment (yes/no).
Follow-up questionnaire
Outcome measures:
Follow-up attendance: We asked survivors if
they still attended follow-up care (a) “I regularly
attend follow-up”, b) “I irregularly attend
follow-up”, c) “Follow-up is completed but I
visit my treating doctor when I have questions”,
d) “Follow-up is completed and I never visit my
former treating doctor”. We coded (a) and (b) as
attenders [1], and (c) and (d) as non-attenders
[0].
Reasons for follow-up (Michel et al., 2009):
Survivors rated the importance of different
Preferences for follow-up care 4
reasons for attending follow-up (0=“not at all
important” to 3=“very important”). Factor
analysis revealed two scales: supportive care (get
information about late effects, talk to staff who
understand what I've been through, get advice
about how to keep healthy, receive psychological
support, get advice about everyday things) and
clinical care (check the cancer has not come
back, get reassurance about health, help clinic
staff learn more about late effects, get the best
medical care). Cronbach’s alpha in our sample
indicated a good internal consistency for both
scales: supportive care: α=0.80; clinical care
α=0.69.
What is important during appointments:
Survivors rated the importance of 10
organisational aspects of follow-up appointments
(0=“not at all important” to 3=“very important”):
Competent staff, being taken seriously,
relationship quality between doctor and patient,
insurance reimbursement, doctor continuity
across appointments, no long waiting times,
regular appointments, short and efficient
consultation,
nurse
continuity
across
appointments, meeting other survivors.
What should be included in follow-up: We asked
about the importance of four clinical aspects
(check that cancer has not come back, screen for
late effects, provide information on potential late
effects, other medical follow-up) and eight
general aspects of follow-up (risk of diseases for
my
children,
psychological
counselling,
availability
of
alternative
medicine,
information/counselling
about
sexuality,
information about education / job, exchange with
other survivors, support in spiritual aspects of
life, other offers). Each aspect was rated on a 4
point scale (0=“not at all important” to 3=“very
important”).
Who should be involved in follow-up: Survivors
rated how personally important it is that different
medical and other specialists are involved in
follow-up (0=“not at all important” to 3=“very
important”): paediatric oncologist, general
practitioner (GP), medical oncologist, fertility
counselling, gynaecologist, endocrinologist,
psychologist/psychiatrist,
specialist
nurse,
radiotherapies,
nutritional
counselling,
physiotherapist,
geneticist,
insurance
counselling, social worker, career counselling,
other specialist)
Where should follow-up be provided: We asked
survivors’ agreement (0=“don’t agree at all” to
3=“completely agree”) about the place where
they would like to attend follow-up: a) at the
paediatric hospital, where they were treated, b) a
hospital for adults, c) a central, specialised
follow-up clinic, d) their GP.
Preferences for models of follow-up care: We
provided a short description of five different
models
of
follow-up
care:
a)
telephone/questionnaire based follow-up, b) GP
follow-up, c) follow-up by paediatric oncologist
who originally treated the patient, d) medical
oncologist follow-up, e) hospital-based followup by a multidisciplinary team (MDT). For each
model we asked survivors if this kind of followup would suit them, if they were afraid that
health problems would not be detected, if they
would not be satisfied with this kind of followup, and if they thought that this kind of followup was appropriate for their health (0=“don’t
agree at all” to 3=“completely agree”). Two
items were reverse coded such that a higher
score indicated higher positive agreement for the
respective model (0-3). We calculated the mean
of the four items to indicate agreement with each
model. For model e) we asked 4 additional
items, which were analysed separately (I can
contact all specialists I need, I can be referred to
the right specialist, follow-up is less personal, I
don’t know who is responsible for me).
Socio-demographic
characteristics
and
psychological distress:
Psychological distress: We used the Brief
Symptom Inventory-18 (BSI-18)(Derogatis,
2000) and calculated scores for somatisation,
depression, anxiety, and a Global Severity Index
(GSI). Survivors rated how much they
experienced each symptom during the 7 previous
days on a 5-point scale (1=”not at all” to
5=”extremely”). Scale scores were converted
into T-scores (mean=50; standard deviation
(SD)=10). We created a case-indicator
specifying survivors with high distress (T≥57 on
at least 2 scales or the GSI) (Zabora et al., 2001,
Preferences for follow-up care 5
Gianinazzi et al., 2013). Cronbach’s α in our
sample indicated a good internal consistency for
all three scales and the GSI(somatization:
α=0.78; depression: α=0.90; anxiety: α=0.80;
GSI α=0.91). Educational achievement was
coded as primary (compulsory schooling),
secondary (vocational training or high school
degree), and tertiary education (college or
university degree) (Kuehni et al., 2012b).
Employment was coded as “employed”, “in
education” or “not employed”. Partnership was
coded as not having a partner vs. being in a
partnership. Age at study was coded into ≤25
years and >25 years. The language was coded
into German and French.
Data available from the SCCR
Age at diagnosis was coded into 0-4 years, 5-9
years, 10+ years. Time since diagnosis was
coded into 5-9 years, 10-14 years, 15+years.
Diagnoses were classified according to the
International Classification of Childhood
Cancer-3rd edition) (Steliarova-Foucher et al.,
2005). We recoded diagnoses into four major
groups: leukaemia, lymphoma, CNS tumours
and other solid tumours. Treatment was coded as
surgery
only,
chemotherapy
(without
radiotherapy, may have had surgery),
radiotherapy (may have had surgery and/or
chemotherapy) and stem cell transplantation
(SCT). Relapse and second malignancy were
coded as yes/no.
Analyses
All analyses were performed using Stata 13.0
(StataCorp, College Station, TX). Numbers for
each outcome vary because not all participants
answered all questions. We used descriptive
statistics and chi2-test to compare participants
and non-participants in the study. To analyse aim
1 (preferences for different organizational
aspects and models of follow-up care) we used
means and proportions to describe different
preferences for organizational aspects and
models of follow-up care. Paired t-tests were
used to compare the importance of clinical and
supportive reasons, and as post-hoc test
following Hotelling T-test for the comparison of
more than two means. We used t-test and chi2-
test to analyse differences in preferences
between attenders and non-attenders to followup. To evaluate aim 2 (characteristics of
survivors associated with preferences for
different models of care), we used univariable
and multivariable linear regression analyses
using the mean satisfaction with each model of
care as outcome. We ran separate regression
analyses for each of the five described models of
follow-up care. For multivariable regressions, we
included all variables, which were significantly
associated at p<0.05 in the univariable
regressions for at least one of the follow-up
models.
RESULTS
A total of 754 survivors were eligible for the
follow-up questionnaire. We were able to contact
720 of these, and 314 were included in the study
(43.6%; Figure 1). Participants’ characteristics
are described in Table 1. Participants were more
likely than non-participants to be female, and to
have received radiotherapy, but less likely to
have had surgery only.
1) Preferences for the organisation of followup care
Of the 314 responders, 150 (47.8%) reported
they still attended follow-up (Table 1).
Reasons for follow-up: Clinical reasons
(mean=2.33, SD=0.58) were more important
than supportive reasons (mean=1.61, SD=0.71;
p<0.001; Figure 2). Most important reasons for
survivors to return were to Check that cancer
has not come back (mean=2.53, SD=0.80) and
seek reassurance about health (mean=2.44,
SD=0.72); least important were to receive
psychological support (mean=1.30, SD=1.02)
and get advice about everyday things
(mean=1.21, SD=1.00).
What is important during appointments:
Survivors reported that competent staff
(mean=2.74, SD=0.47) and being taken seriously
(mean=2.70, SD=0.49) were most important to
them during appointments (Figure 3), and
significantly more important than the
relationship quality (mean=2.51, SD=0.64;
p<0.001). Nurse continuity across appointments
(mean=1.43, SD=0.92) and meet other survivors
(mean=0.89, SD=0.83) were least important.
Preferences for follow-up care 6
What should be included? When asked about
clinical aspects that should be included in
follow-up survivors agreed that checking for
cancer recurrence (mean=2.78, SD=0.53) was
most important (Figure 3), more than screening
for late effects (mean=2.67, SD=0.53; p=0.001)
and gaining information on potential late effects
(mean=2.63, SD=0.55; p<0.001). Knowing
about risks for my children (mean=2.22,
SD=0.83) was rated as most important among
general aspects. The possibilities for interaction
with other survivors (mean=0.95, SD=0.86) and
getting advice on spiritual things were rated as
not important (mean=0.42, SD=0.66).
Who should be involved: Paediatric oncologist
(mean=2.26, SD=0.96), general practitioners
(mean=2.10, SD=0.99) and medical oncologist
(mean=2.07, SD=0.95) were rated as most
important to be included in follow-up (Figure 3).
Other specialists or counselling options such as
nutritional counselling (mean=0.99, SD=0.90),
physiotherapist
(mean=0.99,
SD=0.88),
geneticist (mean=0.97, SD=0.96), insurance
counselling (mean=0.89, SD=0.92), social
worker (mean=0.74, SD=0.83), and career
counselling (mean=0.69, SD=0.83) were
considered less important.
Where should follow-up be provided: Survivors
showed no preference for place of follow-up
(Figure 3): children’s hospital (mean=1.94,
SD=1.11), adult hospital (mean=1.86, SD=0.98)
or GP practice (mean=1.86, SD=1.01; no
significant difference: for all p>0.05). A central
specialised late effects clinic was rated least
acceptable (mean=1.25, SD=1.06; compared to
the three other clinics: p<0.001).
There was little difference in preferences for
follow-up between attenders and non-attenders
to follow-up (Online Table 1). Attenders
reported slightly higher preference for clinical
reasons for follow-up (p=0.014), to get the best
medical care (p=0.009), and to talk to staff who
understood what they had been through
(p=0.008).
They
also
valued
regular
appointments (p<0.001) and information about
education or work (p=0.001) higher than nonattenders. Attenders rated presence of
endocrinologists (p=0.045) and other specialists
(p=0.048) as more important than non-attenders.
Preferred model of follow-up care: Survivors
rated
paediatric
oncologist
follow-up
(mean=2.24, SD=0.72) and medical oncologist
follow-up highest (mean=2.17, SD=0.69;
p=0.087). Both these models were rated
significantly higher than the other three models
(all p<0.001, apart from medical oncologist
compared to follow-up by multidisciplinary team
[MDT]: p=0.031): MDT follow-up (mean=2.07,
SD=0.73), GP follow-up (mean=1.90, SD=0.84),
or follow-up by telephone/questionnaire
(mean=1.06, SD=0.83). Regarding MDT followup, survivors liked being able to contact all
specialists they needed (mean=2.27, SD=0.81),
and could be referred to the right specialist
(mean=2.28, SD=0.77). They did not agree that
MDT follow-up might be less personal
(mean=1.50, SD=1.04) or might mean they did
not know who was responsible for their care
(mean=1.13, SD=0.96).
2) Characteristics associated with preferences
for different models of follow-up care
In univariable linear regression analyses we
determined characteristics of survivors with
different preferences for follow-up models
(Online Table 2). Attenders rated follow-up by
medical oncologist higher, and GP or phonefollow-up lower than non-attenders (Figure 4).
Higher ratings of importance of clinical and
supportive reasons were associated with all
models: higher endorsement of importance of
both clinical and supportive reasons were
associated
with
lower
rating
of
telephone/questionnaire and GP follow-up, and
higher rating of the other models. Self-reported
late effects were associated with lower rating of
GP follow-up and higher rating of MDT followup. Survivors who received chemotherapy rated
GP and paediatric oncologist follow-up highest
and survivors undergoing other treatments rated
them lower. Psychological distress was only
associated with higher rating of importance
of?MDT
follow-up.
Regarding
sociodemographic characteristics, survivors older at
study and those with higher education rated the
paediatric oncologist follow-up lower, and
French speaking survivors rated GP follow-up
higher. Results of the multivariable linear
regression remained similarly in the direction of
Preferences for follow-up care 7
the association. However, fewer characteristics
remained statistically significant (Table 2).
DISCUSSION
In our study, approximately half of responding
survivors continued to attend follow-up. We
found that clinical reasons for follow-up such as
checking that cancer has not come back or being
reassured about their health, were rated higher
than supportive reasons. Survivors also expected
competent staff at their follow-up, including
paediatric or medical oncologists as well as
general practitioners. Despite the age of these
survivors (≥18 years) they valued going to the
children’s hospital for follow-up, but adult
hospital or GP practice were rated similarly
highly. Follow-up by paediatric or medical
oncologist were the preferred follow-up models,
particularly by those who rated clinical reasons
for follow-up as very important.
The high endorsement of medical aspects of
follow-up was similar to previous studies (Eiser
et al., 1996, Michel et al., 2009, Zebrack et al.,
2004, Earle et al., 2005). In a UK study using the
same questions, we also found significantly
higher importance given to clinical reasons than
supportive reasons (Michel et al., 2009). We also
found that survivors wanted to discuss clinical
topics such as their current health, late effects or
medication, rather than general topics such as
insurance or work-related issues. Our results also
support findings of a US study showing that
survivors wanted to be taken seriously by their
doctors (Zebrack et al., 2004).
In contrast to UK studies, where GP follow-up
was
rated
comparable
with
telephone/questionnaire follow-up (Michel et al.,
2009, Eiser et al., 1996), Swiss survivors rated
GP follow-up highly, though not as much as
paediatric or medical oncologist follow-up. The
high preference for GP follow-up was also found
in a qualitative study in the USA (Zebrack et al.,
2004); however, survivors ranked follow-up by a
“primary care physician knowledgeable and
experienced in working with survivors” (p.849)
highest. As GPs do not usually care for many
childhood cancer survivors most will lack the
required experience. A close collaboration
between GP and a specialised late effects clinic
might be a solution to this problem (Oeffinger,
2003, Singer et al., 2013). A Dutch study
showed the potential of further education about
late effects and follow-up care for GPs and that
GPs were interested in such a programme
(Blaauwbroek et al., 2007).
Swiss survivors rated paediatric oncologist
follow-up highest. This is in contrast to a US
study, where survivors rated a programme
staffed with a paediatric oncologist and nurse
practitioner lower than primary care physician
follow-up (Zebrack et al., 2004). The high
preference for the paediatric oncologist model in
Switzerland might be due to the fact that
survivors get high quality follow-up provided by
their paediatric oncologist for at least 10 years
after diagnosis. Therefore, the model describes a
model with which they are familiar.
Additionally, in Switzerland we have 9
specialised centres for paediatric oncology
across the country, so that this model provides
appropriate geographical access for most
survivors.
Both attenders and non-attenders to follow-up
reported similar preferences for the organisation
of follow-up. However, attenders valued clinical
reasons slightly higher than non-attenders. This
may be one of the reasons why survivors
continue to attend follow-up while those who
consider clinical reasons to be less important do
not. However, this needs to be addressed in
future work as differences are small.
Expert opinions have often favoured centralised
follow-up care by specialists (Essig et al., 2012).
Our results suggest that Swiss survivors are not
favouring this model; a central specialised late
effects clinic was rated lowest among the
provided places. Although, given the size of
Switzerland, distances to a central clinic would
be relatively short for most survivors, this
suggests that there is a preference for follow-up
to be close to home. Organised transition from
paediatric to adult oncology clinic seems a
logical way forward and should contribute to
optimal follow-up care.
Preferences for follow-up care 8
A major strength of this study is the involvement
of a population-based sample including both
those who attend and those who do not attend
follow-up care. In addition, we had access to
established information on diagnosis, treatment
and relapse from the Swiss Childhood Cancer
Registry. We also assessed a wide range of
different characteristics of follow-up care so that
a detailed picture of survivors’ needs could be
drawn.
A limitation is that we could not include an
objective measure of risk for late effects, apart
from general indicators associated with
diagnosis, treatment, relapse and second tumour.
Depending on this risk, different follow-up
models might be clinically preferable (Wallace
et al., 2001). For example, survivors with a high
risk for late effects might require long-term
specialist care while regular GP visits might be
sufficient for low-risk survivors. It is not known
how far survivors agree or not with these
medical views. Another limitation is the low
response rate, which might indicate that a large
number of survivors are not interested in the
topic of follow-up care or not aware of the
implications of cancer for their future health.
Follow-up care remains an important aspect of
long-term survival after childhood cancer, and
will continue to grow in importance as survivors
age. It is crucial that long-term follow-up not
only respects medical guidelines but is organised
according to survivors’ needs and preferences.
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Blaauwbroek R., Zwart N., Bouma M., Meyboom-De
Jong B., Kamps W. & Postma A. (2007) The
willingness of general practitioners to be involved
in the follow-up of adult survivors of childhood
cancer. J Cancer Surviv 1, 292-297.
Our study showed that survivors value clinicbased follow-up care by specialists, but also
emphasises the necessity to provide care in
convenient locations. This needs to be taken into
account when considering provision of wellorganised long-term follow-up care for adult
survivors of childhood cancer.
Acknowledgements
We thank all survivors for participating in our survey,
the members of the study team of the Swiss
Childhood Cancer Survivor Study (Julia Koch,
Fabienne Liechti, Anna Hohn, Zina Heg-Bachar), and
the team of the Swiss Childhood Cancer Registry
(Vera Mitter, Elisabeth Kiraly, Marlen Spring, Priska
Wölfli).
This work was supported by the Swiss National
Science
Foundation
(Ambizione
grant
PZ00P3_121682/1 and PZ00P3-141722 to GM; Grant
100019_153268 / 1). The Swiss Childhood Cancer
Survivor Study was funded by the Swiss Cancer
League (KLS-2215-02-2008, KFS-02631-08-2010,
KLS-02783-02-2011). The work of the Swiss
Childhood Cancer Registry is supported by the Swiss
Paediatric
Oncology
Group
(www.spog.chwww.spog.ch),
Schweizerische
Konferenz der kantonalen Gesundheitsdirektorinnen
und –direktoren (www.gdk-cds.ch), Swiss Cancer
Research (www.krebsforschung.ch), Kinderkrebshilfe
Schweiz (www.kinderkrebshilfe.ch), Ernst-Göhner
Stiftung, Stiftung Domarena and National Institute of
Cancer
Epidemiology
and
Registration
(www.nicer.ch).
Conflict of Interest statement
No conflict of interest for any of the authors.
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Preferences for follow-up care 11
Table 1: Sample description: Survivors who responded to the baseline questionnaire only compared to
survivors who responded to both questionnaires
Total
Socio-demographic characteristics
Sex
Male
Female
Age at study
≤25 years
>25 years
Migration background
No migration background
Migration background
Language
German
French / Italian
Partnership
No partner
Has partner
Education
Vocational training
Compulsory schooling
Upper secondary/ university education
Employment
Not employed
Employed
In education
Clinical characteristics
Diagnosis
Leukaemia
Lymphoma
CNS tumour
Neuroblastoma
Retinoblastoma
Renal tumour
Hepatic tumour
Bone tumour
STS
Germ cell tumour
Carcinoma
Other neoplasm
LCH
Treatment
Chemotherapy
Surgery only
Radiotherapy
SCT
Age at diagnosis
0-4 years
5-9 years
10+ years
Non-participants
N
440
%
100.0
Participants
N
314
%
100.0
252
188
57.3
42.7
138
176
43.9
56.1
292
148
66.4
33.6
220
94
70.1
29.9
348
92
79.1
20.9
260
54
82.8
17.2
324
116
73.6
26.4
234
80
74.5
25.5
186
128
59.2
40.8
177
69
68
56.4
22.0
21.7
20
190
104
6.4
60.5
33.1
p*
<0.001
0.283
0.204
0.785
0.526
136
89
71
15
10
22
3
24
21
20
6
1
22
30.9
20.2
16.1
3.4
2.3
5.0
0.7
5.5
4.8
4.5
1.4
0.2
5.0
113
59
36
8
5
21
1
22
20
9
7
1
12
36.0
18.8
11.5
2.5
1.6
6.7
0.3
7.0
6.4
2.9
2.2
0.3
3.8
191
77
135
37
43.4
17.5
30.7
8.4
137
32
114
31
43.6
10.2
36.3
9.9
107
134
199
24.3
30.5
45.2
86
78
150
27.4
24.8
47.8
0.030
0.225
Preferences for follow-up care 12
Table 1 continued
Time since diagnosis
16+ years
11-15 years
5-10 years
Relapse
No relapse
Relapse
Second malignancy
None
Has second malignancy
Late effects
No late effects reported
Late effects reported
Psychological distress
No distress
Psychological distress
Follow-up attendance
Regularly attends follow-up
Irregularly attends follow-up
Follow-up completed, visits treating doctor
for questions
Follow-up completed, never visit former
treating doctor
Non-participants
N
%
Participants
N
%
253
144
43
57.5
32.7
9.8
177
91
46
56.4
29.0
14.6
397
43
90.2
9.8
276
38
87.9
12.1
418
22
95.0
5.0
301
13
95.9
4.1
276
145
62.7
33.0
184
127
58.6
40.4
232
79
73.9
25.2
128
22
41
40.8
7.0
13.1
123
39.2
p*
0.102
0.309
0.580
0.077
mean
SD
mean
SD
p#
Age at study
24.3
4.2
24.1
4.4
0.584
Age at diagnosis
8.7
4.5
8.9
4.6
0.622
Time since diagnosis
15.5
3.7
15.2
4.0
0.381
*p from chi2 tests, #p from two sample t-tests, STS Soft tissue sarcomas, LCH Langerhans cell histiocytosis, SCT
Stem cell transplantation
Preferences for follow-up care 13
Table 2: Multivariable linear regression analyses describing characteristics associated with different follow-up model preferences
Follow-up by
Telephone / Questionnaire
Coeff
95% CI
p
1.91 1.49 2.32
General Practitioner
Coeff
95% CI
p
2.54
2.14
2.95
Paediatric Oncologist
Coeff
95% CI
p
1.91
1.56
2.27
Medical Oncologist
Coeff
95% CI
p
1.55 1.20 1.89
Multidisciplinary team
Coeff
95% CI
p
1.52 1.15
1.88
Intercept
Age at study
<=25 years
>25 years
0.07 -0.17 0.32 0.551
-0.05 -0.28
0.19 0.706
-0.18
-0.39 0.03 0.088
-0.17 -0.37 0.04 0.110
0.01 -0.20 0.23
Language
German
French/Italian
0.16 -0.07 0.38 0.171
0.33
0.11
0.55 0.004
-0.12
-0.31 0.08 0.234
-0.04 -0.24 0.15 0.643
-0.08 -0.28 0.12
Education
Vocational training
Compulsory schooling
-0.05 -0.28 0.19 0.706
-0.11 -0.34
0.13 0.376
0.24
0.03
0.45 0.024
-0.02 -0.22 0.18 0.836
0.03 -0.19 0.24
Upper secondary/
university
0.11 -0.15 0.37 0.391
-0.03 -0.28
0.23 0.820
0.02
-0.21 0.24 0.892
0.10 -0.12 0.32 0.351
0.10 -0.13 0.33
Treatment
Chemotherapy
Surgery only
-0.02 -0.34 0.31 0.924
-0.29 -0.61
0.03 0.074
-0.43
-0.71 -0.15 0.003
0.00 -0.28 0.27 0.975
-0.15 -0.44 0.14
Radiotherapy
-0.03 -0.25 0.19 0.775
-0.14 -0.36
0.07 0.188
-0.18
-0.36 0.01 0.066
0.03 -0.16 0.21 0.785
-0.01 -0.21 0.18
SCT
-0.10 -0.44 0.24 0.551
-0.10 -0.43
0.24 0.563
-0.29
-0.59 0.00 0.049
-0.16 -0.45 0.13 0.271
-0.12 -0.42 0.19
Follow-up
Follow-up attender
Not attending follow-up
-0.19 -0.39 0.00 0.055
-0.21 -0.41 -0.02 0.033
0.10
-0.07 0.27 0.259
0.18 0.01 0.35 0.034
0.00 -0.18 0.17
Clinical Reasons for follow-up
(continuous 0-3)
Intercept
per 1 point increase
-0.34 -0.54 -0.14 0.001
-0.04 -0.24
0.16 0.691
0.11
-0.06 0.29 0.197
0.31 0.14 0.48 0.000
0.12 -0.06 0.29
Supportive Reasons for follow-up
(continuous 0-3)
Intercept
per 1 point increase
0.03 -0.15 0.20 0.750
-0.22 -0.39 -0.05 0.011
0.12
-0.03 0.27 0.111
-0.10 -0.24 0.05 0.195
0.12 -0.04 0.27
Psychological distress
(BSI case)
No distress
Significant distress
-0.14 -0.36 0.07 0.197
-0.07 -0.28
0.15 0.543
0.05
-0.14 0.24 0.628
0.10 -0.08 0.29 0.270
0.16 -0.03 0.36
Late effects
None
Late effects reported
-0.01 -0.21 0.19 0.923
-0.09 -0.28
0.11 0.374
-0.07
-0.25 0.10 0.394
-0.03 -0.20 0.14 0.710
0.20 0.03
0.38
Coeff: Coefficient, CI: Confidence Interval, SCT: Stem cell transplantation, BSI case: survivor with high distress in the Brief Symptom Inventory (T≥57 on at least 2 scales or the
Global severity index)
0.907
0.448
0.813
0.401
0.308
0.890
0.451
0.984
0.198
0.130
0.102
0.025
Preferences for follow-up care 14
FIGURE LEGENDS
Figure 1: Participant and non-participant of the study
Preferences for follow-up care 15
Figure 2: Reasons for follow-up care (0 not important to 3 very important; mean and 95%
confidence interval)
Preferences for follow-up care 16
Figure 3: Importance of different aspects of follow-up (0 not important to 3 very important;
mean and 95% confidence interval)
Figure 4: Preferences for different models of follow-up care among attenders and nonattenders to follow-up (mean agreement with 4 items)
Preferences for follow-up care 17
Non-attenders: reported not attending follow-up regularly or irregularly; attenders: reported
attending follow-up regularly or irregularly
Attenders to follow-up
Non-attenders to follow-up
Preferences for follow-up care 18
Online Table 1: Differences in preferences for the organisation of follow-up between attenders and nonattenders to follow-up
Non-attenders
Mean
95%CI
Attenders
Mean
95%CI
2.25
2.48
2.36
(2.15-2.34)
(2.35-2.62)
(2.24-2.48)
2.41
2.57
2.51
(2.32-2.49)
(2.45-2.69)
(2.41-2.62)
0.014
0.346
0.065
2.10
(1.96-2.24)
2.25
(2.13-2.38)
0.114
2.03
1.54
(1.88-2.18)
(1.43-1.65)
2.29
1.69
(2.17-2.41)
(1.57-1.81)
0.009
0.065
2.17
(2.03-2.30)
2.15
(2.02-2.29)
0.888
1.75
(1.59-1.91)
2.05
(1.90-2.21)
0.008
1.44
1.23
(1.29-1.58)
(1.07-1.39)
1.56
1.38
(1.41-1.71)
(1.21-1.54)
0.228
0.218
1.12
(0.96-1.27)
1.30
(1.14-1.47)
0.105
2.74
2.70
2.49
(2.67-2.82)
(2.62-2.77)
(2.39-2.59)
2.74
2.70
2.53
(2.66-2.82)
(2.62-2.78)
(2.43-2.63)
0.945
0.938
0.619
Insurance reimbursement
Doctor continuity
No long waiting
Regular appointments
Short consultation
2.48
2.34
2.08
1.71
1.65
(2.37-2.58)
(2.22-2.45)
(1.95-2.21)
(1.58-1.84)
(1.51-1.79)
2.53
2.48
1.90
2.05
1.56
(2.41-2.65)
(2.36-2.61)
(1.76-2.04)
(1.92-2.18)
(1.42-1.70)
0.473
0.093
0.063
<0.001
0.400
Nurse continuity
Meet survivors
1.39
0.90
(1.24-1.53)
(0.77-1.04)
1.48
0.87
(1.33-1.63)
(0.74-1.00)
0.383
0.759
What should be included in follow-up?
Medical follow-up
Cancer has not come back
2.73
(2.64-2.82)
2.83
(2.75-2.90)
0.110
Screen for late effects
Info on potential late effects
Other medical FU
2.64
2.62
1.78
(2.55-2.73)
(2.53-2.70)
(1.26-2.30)
2.70
2.65
1.83
(2.62-2.78)
(2.57-2.74)
(1.21-2.45)
0.324
0.548
0.902
General follow-up
Risk for my children
Psychological counselling
Alternative medicine
Sexuality
Education / Job
2.23
1.42
1.26
1.22
0.91
(2.11-2.36)
(1.29-1.56)
(1.12-1.40)
(1.09-1.35)
(0.77-1.05)
2.21
1.50
1.43
1.28
1.28
(2.08-2.35)
(1.34-1.65)
(1.28-1.58)
(1.15-1.40)
(1.12-1.43)
0.858
0.476
0.093
0.555
0.001
Exchange with other survivors
Other offers
Spirituality
0.91
0.76
0.35
(0.77-1.06)
(0.10-1.43)
(0.25-0.45)
0.99
0.54
0.49
(0.86-1.12)
(-0.14-1.22)
(0.38-0.60)
0.465
0.621
0.076
Reasons for follow-up care
Clinical reasons (mean score)
Check the cancer has not come back
Get reassurance about health
Help clinic staff learn more about late
effects of Cancer/treatment
Get the best medical care
Supportive reasons (mean score)
Get information about late effects of
cancer
Talk to staff who understand what I've
been through
Get advice about how to keep healthy
Receive psychological support
Get advice about everyday things like
insurance
What is important during follow-up?
Competent staff
Be taken seriously
Relationship quality
p*
Preferences for follow-up care 19
Online Table 1 continued
Non-attenders
Mean
95%CI
Attenders
Mean
95%CI
p*
What medical and non-medical specialists should be involved in follow-up?
Paediatric Oncologist
2.33
(2.18-2.47)
2.19
General practitioner
2.13
(1.98-2.27)
2.07
Medical Oncologist
1.98
(1.82-2.14)
2.17
(2.02-2.36)
(1.91-2.23)
(2.01-2.33)
0.221
0.596
0.101
Fertility counselling
Gynaecologist
Psychologist/Psychiatrist
Radiotherapies
1.51
1.20
1.19
1.15
(1.34-1.68)
(1.03-1.37)
(1.04-1.35)
(1.00-1.30)
1.45
1.38
1.20
1.00
(1.28-1.62)
(1.19-1.56)
(1.04-1.37)
(0.84-1.16)
0.647
0.157
0.935
0.162
Specialist nurse
Endocrinologist
Geneticist
Physiotherapist
Nutritional counselling
1.12
1.09
1.03
0.98
0.96
(0.97-1.28)
(0.94-1.24)
(0.88-1.19)
(0.84-1.12)
(0.81-1.10)
1.14
1.32
0.90
0.99
1.03
(0.99-1.30)
(1.15-1.50)
(0.74-1.06)
(0.85-1.14)
(0.88-1.18)
0.867
0.045
0.237
0.907
0.484
Insurance counselling
Social worker
Career counselling
Other specialist
0.90
0.70
0.66
0.33
(0.75-1.04)
(0.58-0.82)
(0.53-0.78)
(-0.05-0.71)
0.88
0.78
0.74
1.11
(0.73-1.03)
(0.64-0.93)
(0.59-0.88)
(0.43-1.78)
0.871
0.386
0.397
0.048
(1.78-2.10)
(1.76-2.10)
(1.78-2.07)
(1.12-1.46)
1.76
1.96
1.79
1.19
(1.60-1.92)
(1.77-2.14)
0.109
0.831
0.249
0.428
Where would you like to go for follow-up?
Follow-up at general practitioner
1.94
Follow-up at children's hospital
1.93
Follow-up at adult hospital
1.92
Follow-up at specialised late effect clinic
1.29
95%CI: 95% confidence interval
* p from t-tests for comparison between groups
(1.62-1.97)
(1.02-1.36)
Preferences for follow-up care 20
Online Table 2: Univariable linear regression analyses describing characteristics associated with different follow-up model preferences
Follow-up by
Total
Sex
Male
Female
Age at study
<=25 years
>25 years
Parent or child migration
background
no migration background
migration background
Language
German
French
Partner
No
Yes
Education
Vocational training
Compulsory schooling
Upper secondary/ university
Employment
not employed
employed
in education
Clinical characteristics
Diagnosis
Leukaemias
Lymphomas
CNS tumours
Other
Treatment
Chemotherapy
Surgery only
Radiotherapy
SCT
Telephone / Questionnaire
Coeff
95% CI
p
1.06
0.97
1.15
0.527
1.09
0.96
1.23
-0.06 -0.25 0.13
0.306
1.03
0.92
1.14
0.10
-0.10 0.31
General Practitioner
Coeff
95% CI
p
1.90 1.81 1.99
0.709
1.88 1.74 2.02
0.04 -0.15 0.22
0.684
1.91 1.80 2.02
-0.04 -0.25 0.16
0.425
1.04
0.10
0.94
-0.15
1.15
0.34
1.03
0.13
0.92
-0.08
1.14
0.34
1.10
-0.11
0.98
-0.29
1.22
0.08
1.05
-0.08
0.15
0.92
-0.31
-0.08
1.17
0.15
0.38
1.23
-0.19
-0.15
0.86
-0.58
-0.54
1.59
0.19
0.25
1.01
-0.04
0.07
0.15
0.85
-0.30
-0.24
-0.07
1.16
0.23
0.38
0.38
1.11
0.05
-0.08
-0.24
0.97
-0.27
-0.29
-0.57
1.25
0.37
0.12
0.08
0.816
1.90
-0.03
1.80
-0.28
2.01
0.22
1.82
0.32
0.00
1.95
-0.13
1.71
0.11
0.00
1.83
-0.32
1.92
0.53
0.00
2.07
0.06
1.95
-0.19
-0.05
1.83
-0.42
-0.28
2.07
0.04
0.19
1.59
0.37
0.26
1.22
-0.01
-0.14
1.95
0.76
0.66
1.94
0.06
-0.28
-0.05
1.78
-0.20
-0.60
-0.27
2.09
0.32
0.03
0.18
2.04
-0.42
-0.22
-0.19
1.90 2.18
-0.74 -0.10
-0.43 -0.01
-0.52 0.13
0.231
0.268
Paediatric Oncologist
Coeff
95% CI
p
2.24
2.16 2.32
0.792
2.23
2.11 2.35
0.02
-0.14 0.18
0.001
2.33
2.24 2.43
-0.30
-0.47 -0.13
0.387
2.26
-0.09
2.17
-0.31
2.35
0.12
2.25
-0.03
2.16
-0.22
2.34
0.15
2.21
0.08
2.11
-0.09
2.32
0.24
2.20
0.31
-0.13
2.10
0.11
-0.33
2.31
0.51
0.07
2.21
0.02
0.07
1.88
-0.32
-0.29
2.54
0.36
0.42
2.30
-0.03
-0.36
-0.04
2.17 2.43
-0.25 0.20
-0.63 -0.09
-0.23 0.16
2.40
-0.40
-0.24
-0.25
2.28 2.52
-0.68 -0.13
-0.42 -0.06
-0.53 0.03
0.003
0.243
0.188
0.434
2.26
0.21
2.18
-0.03
2.09
-0.20
2.27
0.15
2.15
0.05
2.05
-0.10
2.25
0.21
2.17
0.01
-0.03
2.07
-0.19
-0.22
2.28
0.21
0.17
1.91
0.32
0.21
1.60
-0.01
-0.13
2.22
0.64
0.55
2.12
0.10
-0.11
0.13
1.99
-0.12
-0.38
-0.05
2.25
0.32
0.16
0.32
2.18
-0.03
0.01
-0.06
2.06
-0.30
-0.17
-0.34
2.30
0.24
0.18
0.21
1.97
-0.16
2.15
0.27
2.07
0.00
1.97
-0.19
2.16
0.19
2.03
0.08
1.93
-0.08
2.14
0.25
2.02
0.09
0.15
1.91
-0.12
-0.06
2.13
0.29
0.36
1.76
0.31
0.35
1.43
-0.04
0.00
2.09
0.65
0.71
2.05
0.02
-0.06
0.06
1.91
-0.21
-0.35
-0.13
2.19
0.26
0.22
0.26
2.08
-0.12
0.03
-0.10
1.96
-0.41
-0.16
-0.38
2.20
0.17
0.21
0.19
0.972
0.497
0.317
0.948
0.845
0.334
0.112
0.068
0.034
0.599
2.06
0.06
0.773
0.001
0.247
0.412
2.08
-0.21
0.351
0.117
Multidisciplinary team
Coeff
95% CI
p
2.07
1.99
2.15
0.095
1.99
1.87
2.11
0.14
-0.02
0.30
0.297
2.04
1.94
2.14
0.09
-0.08
0.27
0.997
2.17
0.00
0.723
0.284
0.599
Medical Oncologist
Coeff
95% CI
p
2.17
2.09
2.25
0.086
2.09
1.98
2.21
0.14
-0.02
0.29
0.119
2.21
2.12
2.30
-0.13
-0.30
0.03
0.152
0.241
0.006
0.827
0.958
0.699
Preferences for follow-up care 21
Follow-up by
Age at diagnosis
0-4 years
5-9 years
10+ years
Time since diagnosis
16+ years
11-15 years
5-10 years
Relapse
No relapse
Relapse
Second tumour
None
Second tumour
Follow-up
Follow-up attender
Not attending follow-up
Clinical Reasons for followup (linear 0-3)
Intercept
per 1 point increase
Supportive Reasons for
follow-up (linear 0-3)
Intercept
per 1 point increase
Psychological distress (BSI
case)
No distress
Significant distress
Late effects
None
Late effects reported
Telephone / Questionnaire
Coeff
95% CI
p
0.665
1.06
0.89
1.24
0.07
-0.19 0.32
-0.04 -0.26 0.18
0.446
1.11
0.99
1.24
-0.13 -0.34 0.08
-0.10 -0.37 0.17
0.602
1.05
0.95
1.15
0.07
-0.21 0.36
0.852
1.06
0.97
1.16
-0.04 -0.51 0.42
0.003
1.20
1.07
1.32
-0.28
-.46
0.10
0.000
1.90
-0.36
1.52
-0.52
2.28
-0.20
1.33
-0.16
1.09
-0.29
1.56
-0.03
1.11
-0.15
1.00
-0.37
1.21
0.06
1.09
-0.05
0.97
-0.24
1.21
0.14
General Practitioner
Coeff
95% CI
p
0.819
1.93 1.76 2.11
-0.01 -0.27 0.24
-0.07 -0.29 0.16
0.970
1.91 1.78 2.03
-0.03 -0.24 0.19
-0.01 -0.29 0.26
0.783
1.89 1.80 1.99
0.04 -0.25 0.33
0.882
1.90 1.81 2.00
-0.04 -0.50 0.43
0.000
2.06 1.93 2.19
-0.34 -.52 -0.16
Paediatric Oncologist
Coeff
95% CI
p
0.132
2.37
2.21 2.52
-0.22
-0.44 0.00
-0.14
-0.33 0.05
0.068
2.16
2.05 2.27
0.19
0.01 0.38
0.19
-0.05 0.42
0.633
2.25
2.16 2.34
-0.06
-0.31 0.19
0.254
2.25
2.17 2.34
-0.23
-0.64 0.17
0.183
2.19
2.08 2.30
0.11
-0.05 0.27
0.00
2.33
-0.19
1.94 2.71
-0.35 -0.03
1.70
0.24
1.36
0.10
2.03
0.37
2.24
-0.22
2.02 2.47
-0.35 -0.09
1.95
0.18
1.75
0.07
2.15
0.30
1.93
-0.14
1.82
-0.35
2.04
0.08
2.23
0.04
2.14
-0.15
2.32
0.22
1.98
-0.20
1.86
-.38
2.10
-0.01
2.29
-0.10
2.19
-0.27
2.40
0.06
0.023
0.017
0.001
0.001
0.155
1.23
0.14
1.86
0.40
2.05
0.07
1.86
-0.04
2.25
0.18
2.16
0.04
2.07
-0.14
2.25
0.21
2.20
-0.07
2.10
-0.23
2.30
0.09
0.019
1.67
0.17
1.33
0.03
2.01
0.31
1.78
0.18
1.58
0.07
1.98
0.29
2.02
0.21
1.93
0.02
2.12
0.40
1.98
0.23
1.87
0.06
2.08
0.39
0.199
0.706
0.038
Multidisciplinary team
Coeff
95% CI
p
0.731
2.02
1.86
2.17
0.05
-0.17
0.28
0.08
-0.12
0.28
0.301
2.02
1.91
2.13
0.15
-0.04
0.33
0.02
-0.22
0.26
0.891
2.07
1.98
2.16
-0.02
-0.27
0.23
0.959
2.07
1.98
2.15
-0.01
-0.42
0.40
0.557
2.04
1.93
2.16
0.05
-0.12
0.21
0.000
1.55
0.27
0.002
0.202
0.584
Medical Oncologist
Coeff
95% CI
p
0.174
2.10
1.95
2.26
-0.01
-0.23
0.20
0.14
-0.05
0.33
0.062
2.10
2.00
2.21
0.09
-0.08
0.27
0.27
0.04
0.49
0.291
2.19
2.10
2.27
-0.13
-0.36
0.11
0.299
2.16
2.08
2.24
0.20
-0.18
0.59
0.014
2.08
1.97
2.18
0.19
0.04
0.35
0.002
0.690
0.214
0.028
0.411
0.007
Coeff: Coefficient, CI: Confidence Interval, CNS: Central nervous system, SCT: Stem cell transplantation, BSI case: survivor with high distress in
the Brief Symptom Inventory (T≥57 on at least 2 scales or the Global severity index)