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BMC Health Services Research
Stepping intoadulthood: pediatric cancer
survivors andtheir parents’ perspectives
onthetransition frompediatric toadult care
Aleshchenko Ekaterina1*, Langer Thorsten2, Calaminus Gabriele3, Glogner Juliane3, Enno Swart1 and
Katja Baust3
Abstract
Aims The transition from pediatric to adult healthcare is crucial for adolescent cancer survivors due to the potential
lifelong late effects of their treatment. Despite the importance of ongoing follow-up care, attendance often declines
after transitioning to adult services. This study explores the perspectives of adolescent and adult pediatric cancer
survivors and their families on this transition process.
Methods Using the Theory of Planned Behaviour, we developed interview guidelines and conducted 36 episodic
narrative interviews with survivors and their parents. Our analysis focuses on their transition experiences and expecta-
tions, as part of the broader VersKiK-Study aimed at improving (long-term) follow-up care for pediatric cancer survi-
vors in Germany.
Results Findings show that although transitioning is viewed as a significant step toward adulthood, a lack of pre-
paredness and anxiety can hinder a shift between healthcare systems. Survivors expressed the need to initiate
the transition process while still under pediatric care. Clear and effective communication was identified as key
to ensuring a smooth transition. Adult survivors acknowledged the transition’s importance in fostering self-reliance
and independence.
Conclusions To facilitate better outcomes, transition planning should include early introductions to adult care pro-
viders and strong communication strategies to address the emotional and psychosocial challenges faced by adoles-
cent cancer survivors. Aligning transition practices with the needs and concerns of survivors could enhance follow-up
care engagement, ultimately improving long-term outcomes for pediatric cancer survivors.
Keywords Cancer survivorship, Follow-up care, Pediatric cancer, Psycho-oncology, Self-management, Transition from
pediatric to adult healthcare
Background
Being mostly treatable, cancer in childhood or adoles-
cence may often result in life-long late effects. e objec-
tive of (long-term) follow-up care is to minimize their
impact through prevention, early detection, or effective
treatment, aiming to enhance survivor’s overall quality
of life [1]. However, many of them tend to stop attend-
ing regular follow-up appointments once they transition
*Correspondence:
Aleshchenko Ekaterina
ekaterina.aleshchenko@med.ovgu.de
1 Institute of Social Medicine and Health Systems Research, Faculty
of Medicine, Otto von Guericke University, Magdeburg, Germany
2 University Hospital of Schleswig-Holstein, Campus Lübeck, Lübeck,
Germany
3 Department of Pediatric Hematology and Oncology, University Hospital
Bonn, Bonn, Germany
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Page 2 of 12
Ekaterinaetal. BMC Health Services Research (2025) 25:204
from pediatric care, with a gradual decline in follow-up
over time after completing their treatment [2, 3].
e transition from pediatric to adult-centered health-
care facilities for adolescents who have undergone cancer
treatment is a complex process involving developmental,
health-related, and organizational changes, such as a con-
trol perception, lack of confidence in self-management
capabilities, or issues with autonomy from parents [4].
is multifaceted process requires careful consideration
of personal preexisting factors such as age, gender, emo-
tional and social maturity, health status, and situational
contexts, involving their parents, and healthcare provid-
ers [5].
Naturally, parents play active roles in the survivor’s
lives and are usually active in managing their health con-
ditions. Parents serve as informal care managers, taking
on responsibilities to support young survivors as they
navigate the challenges of becoming independent [6].
Even as young people progress towards independence
in managing their health conditions, some may still seek
guidance from their parents regarding their care [7]. Par-
ents express worries about their children transitioning
from pediatric to adult care, particularly regarding their
ability to advocate for themselves, manage their illness,
and receive appropriate care as they enter adulthood
[8]. Parents may feel ambivalent about the transfer and
may hesitate to relinquish their roles in their children’s
care [9]. e majority of parents expect their adoles-
cents to self-manage their medical care after that transfer,
although they are concerned about potentially reducing
their involvement in this process [10]. Moreover, parents
aim to strike a balance between relinquishing control and
maintaining some level of oversight in their children’s
medical care [11]. e latter is often dependent on the
subjective perception of the “right timing” for the transi-
tion, - a time point, when survivors feel comfortable and
prepared for the process [12, 13].
e roles of different healthcare providers, directly
involved in (long-term) follow-up care, vary depending
on several factors. Firstly, the most common obstacle in
transitioning to adult healthcare facilities is the lack of
knowledge among primary care practitioners about the
long-term effects of pediatric cancer (e.g. [14, 15]). Addi-
tionally, a perceived emotional attachment to pediatric
oncologists makes the psychological aspect of transition-
ing to adult medicine challenging [16].
In Germany, the transition from pediatric to adult
healthcare lacks a standardized approach and is often
left to the initiative of individual doctors or hospitals, as
well as the active involvement of patients’ families [17].
is process is complicated by the structural separation
between pediatric and adult healthcare systems, which
typically do not have mechanisms for direct information
exchange. us, up to 40% of adolescent patients lose
access to appropriate specialist care during the transition
from pediatric and adolescent medicine to adult medi-
cine [18, 19]. Recently, specialized guidelines have been
developed to support this transition, aiming to address
its complexity and improve outcomes [20] and currently
funded health care studies address this gap [21]. How-
ever, implementing these guidelines remains challenging
due to variations in local healthcare practices, resource
availability, and the need for alignment across diverse
stakeholders.
Different evidence-based tools and models were sug-
gested to tackle the challenge of addressing complex
and dynamic issues related to transition. SMART model,
the Social-ecological Model of Readiness for Transi-
tion, developed specifically for use with adolescents
and young adults with chronic health conditions, was
already adopted for pediatric cancer survivors [22, 23].
is framework examines barriers and facilitators across
multiple system levels, providing a comprehensive per-
spective on the transition process. It integrates individ-
ual survivor factors—such as developmental readiness,
knowledge, and self-efficacy—with interconnected ele-
ments, including relationships with parents and health-
care providers, as well as broader psychosocial aspects.
For successful practical application, it is critical to incor-
porate the different perspectives and coping strategies of
survivors and their parents.
To address this gap, this study aimed to investigate the
experiences and expectations of pediatric cancer sur-
vivors, both adolescents and adults, as well as the per-
spectives of their parents regarding the transition from
pediatric to adult healthcare facilities.
Methods
is analysis is part of the larger VersKiK project, which
investigates the long-term effects of childhood and ado-
lescent cancer, adherence to specific long-term follow-
up guidelines, and the actual long-term follow-up needs
of survivors and their parents. e overall design of the
VersKiK project and a detailed description of this study’s
methodology are provided in separate publications [24,
25].
e VersKiK project was approved by the Ethics
Committee Otto von Guericke University on 2.07.2021
(103/21), by the Ethics Committee of Johannes Guten-
berg University Mainz on 16.06.2021 (2021–16035), by
the Ethics Committee University of Lübeck on 10.11.2021
(21–451), by the Ethics Committee University of Hospital
Bonn on 28.02.2022 (05/22). For each part of the quali-
tative study, the Ethics Committees approved a separate
written informed consent.
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
Design
To investigate the perspectives of survivors and their
parents on the transition process, we created episodic
narrative interview guidelines in German [26]. ese
guidelines were adopted for adolescent (12–18 years old)
and adult survivors and their parents , - e.g., using appro-
priate language and minor changes to the questions. e
interview guideline had a modular structure, aiming to
address dimensions of eory of Planned Behaviour [27]
e comprehensive process of developing the interview
guideline is described elsewhere [28].
is article analyzes a specific set of questions focused
on transition issues. To capture diverse perspectives on
the transition process, all interview participants were
asked these questions, regardless of their or their chil-
dren’s transition status (whether it had not started, was in
progress, completed, or not undertaken). e only varia-
tion in the questions was based on the participant’s cur-
rent age and how close they were to the transition period.
e interview guidelines are outlined in Table1.
Recruitment
Participants were recruited using a convenience sam-
pling method [29], with participation based on a volun-
teer basis, requiring individuals to invite themselves.
Recruitment was carried out through specialized media
outlets such as WIR, a German magazine aimed at child-
hood cancer patients, survivors, and their parents, and
social media platforms managed by the Children’s Cancer
Foundation1. Additionally, participating hospitals were
involved to ensure a diverse range of participants in terms
of age, cancer diagnoses, and (long-term) follow-up dura-
tion. Eligibility criteria included individuals regardless of
their type of treatment received, cancer diagnosis, stage,
or grade of cancer survived. e sole exclusion criterion
was an insufficient cognitive function that could poten-
tially hinder participation in the interview.
Data collection
EA and JG conducted 36 interviews across multiple loca-
tions: the University Hospital Schleswig-Holstein and the
University Hospital Bonn, both of which have specialized
multidisciplinary long-term follow-up care, and the Uni-
versity Hospital Magdeburg, which lacks such facilities.
ese interviews took place between September 2022
and March 2023. Because of the COVID-19 pandemic,
one interview was conducted via video call. We obtained
written informed consent from all participants, and for
minors, we also collected the signature of a parent .
Analyses
We employed Hsieh and Shannon’s methodology to apply
content analyses for the interview transcripts, following
a structured five-step approach [30]. Initially, the process
involved transforming textual data into narrative form
and identifying units of analysis and key themes. Coding
rules were established to systematically apply the cod-
ing system across all narrative data. is coding system
was continuously refined as needed to ensure compre-
hensive coverage of significant concepts and recurring
themes within the narratives. e thematic coding pro-
cess allowed us to systematically classify and categorize
the main themes identified in the interviews. emes
were initially defined by EA and then reviewed by KB to
ensure consistency and accuracy in capturing the essence
of the messages conveyed in the data.
We conducted this study following COREQ guidelines
[31] and declaration of Helsinki [32].
Results
e general characteristics of interviewees are presented
in Table2 “General characteristics of interviewees”.
Table3 summarizes the perspectives of adolescent and
adult survivors, and their parents on transitioning from
pediatric to adult care. Further, we outline the most detail
and provide more context for their understanding.
Denition oftransition
Interviewees from different groups emphasized vari-
ous aspects when defining the concept of "transition."
Adolescents mainly see transition as an integral part of
maturing and entering adulthood, accompanied by tan-
gible responsibilities like employment and financial inde-
pendence. ey put more focus on the personal growth
aspect, viewing transition as a time to become more
self-reliant.
“More responsibility. At some point, you move, get
married, and have kids. But even before that, you
might move out and live alone or with someone
else, and you have responsibilities. You have to earn
money and work. So, yeah, there are these duties you
have to take care of.” (Adolescent survivor, 14,7 years
after diagnoses)
Parents see transition as a change in organizational
form and type of care. is perspective underscores the
importance of survivors learning to manage their health
independently. Similarly, adult survivors reflect on the
transition as essential for the continuity and appropriate-
ness of care within the healthcare framework. Transition
is mostly seen as necessary to align with new adult tasks
in all spheres of life .
1 https:// www. kinde rkreb sstif tung. de/
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
Table 1 Interview guidelines
Jugendliche Adolescents
1. Was verstehst Du unter dem Wechsel von der Kinderonkologie zu den
Erwachsenen-Ärzt*innen (Transition)?
Likert: Ich fühle mich bereit für die Transition.
Wenn untere Hälfte der Skala: Warum fühlst Du Dich nicht bereit für die
Transition?
Wenn obere Hälfte der Skala: Welche Aufgaben siehst Du für Dich im
Zusammenhang mit der Transition?
Zusätzliche Frage: Würdest Du gern selbst entscheiden, wann Deine
Transition beginnt?
1. What do you understand by the transfer from pediatric oncology to adult
doctors (transition)?
Likert: I feel ready for the transition.
If the lower half of the scale: Why don’t you feel ready for a transition?
If the upper half of the scale: What tasks do you see for yourself concern-
ing the transition?
Additional question: Would you like to decide by yourself when your transi-
tion begins?
2. Fühlst Du dich wohl, wenn Du als erwachsen behandelt wirst?
Likert: In welchem Ausmaß fühlst Du Dich in Deinen Nachsorge-Prozess
eingebunden?
Wenn untere Hälfte der Skala: Warum fühlst Du Dich nicht genügend
in den Prozess eingebunden?
Wenn obere Hälfte der Skala: Was trägt dazu bei, dass Du Dich einge-
bunden fühlst?
2. Do you feel comfortable being treated as an adult?
Likert: To what extent do you feel involved in your follow-up care process?
If the lower half of the scale: Why don’t you feel involved enough
in the process?
If the upper half of the scale: What makes you feel involved?
3. Wer organisiert Deine Nachsorgetermine?
Likert: Ich bin bereit, meine Nachsorge selbst zu planen.
Wenn untere Hälfte der Skala: Warum fällt es Dir schwer?
Wenn obere Hälfte der Skala: Was gibt Dir Zuversicht, es selbst zu schaf-
fen?
3. Who organizes your follow-up appointments?
Likert: I am prepared to organize my follow-up care myself.
If the lower half of the scale: Why do you find it difficult?
If the upper half of the scale: What gives you the confidence to do it
yourself?
4. Denkst Du, dass Du auch noch ein Nachsorge-Angebot brauchst, wenn
Du erwachsen bist?
Likert: Wie zuversichtlich bist Du, an Deinem nächsten Nachsorgetermin
teilzunehmen?
Wenn untere Hälfte der Skala: Welche Art Unterstützung bräuchte es,
damit Du regelmäßig an Deinen Nachsorgeterminen teilnehmen kannst?
Wenn obere Hälfte der Skala: Was oder wer sorgt dafür, dass es Dir eher
leichtfällt, an regelmäßigen Nachsorgetermine teilzunehmen?
4. Do you think you will still need follow-up care when you are an adult?
Likert: How confident are you about attending your next follow-up
appointment?
If the lower half of the scale: What kind of support would it take for you
to attend your follow-up appointments regularly?
If the upper half of the scale: What or who makes it rather easy for you
to attend regular follow-up appointments?
Sorgeberechtigte Informal careers
1. Was verstehen Sie unter dem Übergang von der Kinderonkologie zu
den Erwachsenen-Ärzt*innen (Transition)?
Likert: Die Transition kommt für mein Kind zum richtigen Zeitpunkt.
Wenn untere Hälfte der Skala: Welche Hürden bestehen Ihrer Meinung
nach?
Wenn obere Hälfte der Skala: Wieso ist es ein guter Zeitpunkt?
Wenn Ihr Kind ein gesundheitliches Problem hat, bei dem Sie denken,
dass es sich um eine Spätfolge handeln könnte, wer ist Ihr erster Anspre-
chpartner?
Weshalb ist dies in der Regel ihr erster Ansprechpartner?
1. What do you understand by the transition from pediatric oncology
to adult doctors?
Likert: The transition comes at the right time for my child.
If the lower half of the scale: What hurdles do you think exist?
If the upper half of the scale: Why is it a good time?
If your child has a health problem that you think could be a late effect, who
is your first point of contact?
Why is this usually your first point of contact?
2. Welche Gefühle haben Sie, wenn Sie an die Transition Ihres Kindes
denken?
Likert: Ich bin bereit meinem Kind die Verantwortung für seine/ihre
eigene Nachsorge zu übergeben.
Wenn untere Hälfte der Skala: Warum fällt es Ihnen eher schwer?
Wenn obere Hälfte der Skala: Wie ermutigen Sie ihr Kind, selbst mehr
Verantwortung zu übernehmen?
2. What feelings do you have when you think about your child’s transition?
Likert: I am ready to give my child responsibility for his/her follow-up care.
If the lower half of the scale: Why do you find it rather difficult?
If the upper half of the scale: How do you encourage your child to take
on more responsibility themselves?
3. Welche Aufgaben sehen Sie für sich bei der Transition Ihres Kindes?
Likert: Die Transition findet zu einem guten Zeitpunkt statt.
Wenn untere Hälfte der Skala: Was könnte für Sie ein Merkmal des „richti-
gen Zeitpunkts“ sein?
Wenn obere Hälfte der Skala: Was gibt Ihnen Zuversicht, dass Ihr Kind die
Transition selber steuern kann?
3. What tasks do you see for yourself in your child’s transition?
Likert: The transition is taking place at a good time.
If the lower half of the scale: What could be a characteristic of "the right
time" for you?
If the upper half of the scale: What gives you confidence that your child can
manage the transition themselves?
Erwachsene Adult Survivors
1. Welche Erfahrungen haben Sie mit Ihrem Wechsel von der Kinderonkol-
ogie zu den Erwachsenen-Ärzt*innen (Transition) gemacht?
Likert: Ich bin mit meiner Transition zufrieden (gewesen).
Wenn untere Hälfte der Skala: Was ist, Ihrer Meinung nach, nicht so gut
gelaufen? Bitte nennen Sie ein paar Beispiele.
Wenn obere Hälfte der Skala: Was war dabei gut? Bitte nennen Sie ein
paar Beispiele.
1. What experiences have you had with your transfer from pediatric oncol-
ogy to adult doctors (transition)?
Likert: I (was) satisfied with my transition.
If the lower half of the scale: In your opinion, what did not go so well?
Please give a few examples.
If the upper half of the scale: What was good about it? Please give a few
examples.
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
“I think it’s because I’ve taken responsibility for
myself in other areas too. I don’t live at home any-
more, I have my job, and so on. at’s why it felt
right. I was confident enough to say that I’d handle
this follow-up examination on my own.” (Adult sur-
vivor, 3,7 years after diagnoses)
“The right time” forthetransition
e perception of the "right time" for transition also var-
ies among adolescents, parents, and adult survivors,
reflecting their differing roles and experiences.
Adolescents often feel unprepared for the transition
and prefer to delay it until they feel psychologically ready.
ey wish to have the autonomy to decide when to make
the shift, often postponing it to avoid the challenges and
responsibilities that come with the transition.
“I’d want to figure it out for myself, maybe through
a bit of discussion or something like that. I’d like to
hear the pros and cons and understand why it might
be important from a medical standpoint. At the
end of the day, the doctors have the final say, and
if something’s really important, I’d go along with it.
But I’d still want to understand what’s going on and
share my own thoughts.” (Transition survivor, 1,5
years after diagnoses)
Parents share similar concerns about readiness but
from a protective perspective. ey frequently believe
that their children are not yet psychologically prepared
for the transition and worry about their ability to manage
independently.
“I think she needs a bit more time, for both her and
us. We’re not quite ready to let go completely yet.
With our daughter, there are still some understand-
ing issues—she’s still really dependent and doesn’t
quite get it.” (Parent of survivor 14,2 years after diag-
noses)
In contrast, adult survivors often view the 18th birth-
day as an appropriate time for transition. ey see this
milestone as a natural time to take on adult responsibili-
ties, in line with other life changes that happen at this age,
bringing greater independence and self-management.
Changes inhealthcare throughthetransition
Adolescents perceive the main change as increase in
duties and responsibilities. ey are particularly appre-
hensive about adapting to new doctors and unfamiliar
medical environments, which adds to the challenge of
managing their health independently.
“You already know your current doctor and under-
stand each other well. You’re familiar with the con-
tacts and everything. But if you switch to an adult
clinic, you’ll be dealing with new faces—new nurses
and doctors who won’t know the details of your
treatment. Only the pediatricians will have that
info. at’s why I’d prefer to stay where we are” (Ado-
lescent survivor, 2,7 years after diagnoses)
Parents, on the other hand, express significant con-
cerns about the quality of healthcare in adult medicine.
ey worry about whether their children will receive the
same level of attention and support they had in pediatric
healthcare.
‘‘How do I feel about it? Well, in pediatric care one
can rely on the ward staff to do thorough examina-
tions and great availabilities. Expecting long waiting
times and fewer available appointments….let’s just
say it makes me feel rather pessimistic.“(Parent of
survivor 2,7 years after diagnoses)
Adult survivors typically see the transition primar-
ily as a formal change in organizational structure. ey
Table 1 (continued)
Jugendliche Adolescents
2. Hat sich seit dem Wechsel in die Erwachsenenmedizin etwas an Ihrer
medizinischen Versorgung verändert?
Likert: Die Transition hat signifikante Veränderungen meiner Versorgung
gebracht.
Wenn untere Hälfte der Skala: Was hat Ihnen geholfen, reibungslos durch
diesen Prozess zu kommen?
Wenn obere Hälfte der Skala: In welchen Bereichen war diese Veränder-
ung am stärksten? Bitte nennen Sie ein paar Beispiele.
2. Has anything changed in your medical care since the transition to adult
medicine?
Likert: The transition has brought significant changes to my care.
If the lower half of the scale: What has helped you get through this process
smoothly?
If the upper half of the scale: In which areas was this change most signifi-
cant? Please give a few examples.
3. Wie stellen Sie sich die Organisation einer idealen Nachsorge vor?
Likert: Mein Hausarzt/Meine Hausärztin geht auf meine spezifischen
Nachsorge-Anliegen (Untersuchungen, Fachspezialisten) ein.
Wenn untere Hälfte der Skala: Welche Schwierigkeiten hat das für Sie
schon verursacht? Nennen Sie bitte ein paar Beispiele.
Wenn obere Hälfte der Skala: Wie unterstützt Sie Ihr Hausarzt/Ihre Hausär-
ztin konkret?
3. How do you picture the organization of ideal follow-up care?
Likert: My family doctor addresses my specific follow-up care concerns
(examinations, specialists).
If the lower half of the scale: What difficulties has this already caused
for you? Please give a few examples.
If the upper half of the scale: How specifically does your family doctor sup-
port you?
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
recognize that the transition involves shifting from pedi-
atric to adult medicine, which is largely driven by admin-
istrative and healthcare system-related requirements.
However, they also acknowledge that this change trans-
fers more responsibility to the patient, who must now
take a more active role in managing their health.
“Yes, I think the best part was getting more infor-
mation and being told more about everything. It’s
probably because, in the pediatric ward, some kids
might not be able to communicate about things
very well. When you switch to the adult clinic, you
get talked to more directly and not just through
your parents. So, getting more personal atten-
tion and detailed information was the best part.”
(Transition survivor, 13,2 years after diagnoses)
Table 2 General characteristics of interviewees
Diagnosis: HL Hodgkin’s lymphoma, NHL Non-Hodgkin lymphoma, CML Chronic myeloid leukemia, ALL Acute lymphoblastic leukemia, NET Neuroendocrine tumor, Y
yes, N no
Year of birth Diagnosis Year since
Diagnoses Transition
patient
(18–25 years
old)
Adult patient Adolescent Informal
caregiver Relapse
1 1996 Suprasellar germinoma 6.8 X N
2 1992 HL 1.7 X N
3 1993 Rhabdomyosarcoma 18.1 X N
4 2000 Osteosarcoma 13.2 X N
5 2006 Osteosarcoma 4.3 X N
6 2006 HL 1.5 X N
7 2005 Osteosarcoma 2.6 X N
8 2002 Ewing’s sarcoma 4.0 X N
9 2003 ALL 6.0 X N
10 2004 Nephroblastoma 10.4 X N
11 2006 Osteosarcoma 4.3 X N
12 2006 HL 1.5 X N
13 2005 Osteosarcoma 2.6 X N
14 2002 Ewing’s sarcoma 4.0 X N
15 2003 ALL 6.0 X N
16 2004 Nephroblastoma 10.4 X N
17 2001 Neuroblastoma 3.7 X N
18 1982 ALL 37.6 X N
19 2000 NET 20.1 X N
20 2003 Brain tumour 6.7 X N
21 2000 Brain tumour 20.1 X Y
22 1988 HL 21.7 X N
23 1967 Leukaemia 17.8 X Y
24 2004 Rhabdomyosarcoma 14.2 X N
25 2006 Neuroblastoma 14.7 X N
26 2003 Brain tumour 5.6 X N
27 2003 Brain tumour 11.6 X N
28 2004 Rhabdomyosarcoma 14.2 X N
29 2003 Neuroblastom 5.6 X Y
30 1978 HL 17.3 X N
31 2004 CML 5.7 X N
32 2010 ALL 3.7 X N
33 2008 ALL 2.7 X N
34 2004 CML 5.7 X N
35 2008 ALL 2.7 X N
36 2010 ALL 3.7 X N
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
Table 3 General themes from Interviews
Adolescents Informal Careers Adult Survivors
Definition of transition Define transition mainly as a time when they
have to take on more responsibility. It is associ-
ated with growing up and the accompanying
duties such as working and earning money.
See transition as a change of organizational
form and type of care. It is emphasized that it
is also about young adults learning to manage
their health independently.
See transition as a change in the form of care
and organizational structure. It is seen as a for-
mal change from pediatric oncology to adult
medicine, which is necessary because the billing
system requires it.
The “right time” Mostly are not yet feeling ready for the transi-
tion and would prefer to decide for themselves
when the time is right, often with a tendency
to delay this.
Are often of the opinion that their children are
not yet ready and are worried about the transi-
tion. They want to ensure that their children
are well prepared and have the necessary skills
to act independently.
Consider the 18th birthday to be an appropriate
time for the transition, as this coincides with other
aspects of growing up, such as organising oneself
and taking on responsibility.
Changes in healthcare through the transition See the transition as a phase with more duties
and responsibilities, as well as a challenge
because of need to get used to new doctors.
Have concerns about the quality of care in adult
medicine and their children’s ability to take
on the new responsibilities.
See the transition mainly as a formal change
in care and organisation, but also recog-
nise that more responsibility is transferred
to the patient.
Responsibility for the organisation of care Perceive taking on responsibility as a major chal-
lenge and would often prefer to postpone it. Emphasise the importance of gradually transfer-
ring responsibility so that their children feel
safe and can develop confidence in their own
abilities.
See it as an important step for young adults
to learn to manage their own healthcare. They see
the transition as part of the process of preparing
their children for adult life.
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
Responsibility fortheorganization ofcare
Adolescent interviewees expressed both readiness and
anxiety about taking full responsibility for their health
care. ey understood the necessity of the transition but
felt uncertain about their preparedness, focusing on the
emotional challenges of the transition, such as the poten-
tial lack of familiar and supportive relationships with
new healthcare providers in an adult healthcare setting.
ey fear being less well-understood by healthcare pro-
viders for adults and the possibility of feeling out of place
among older patients.
“I think the familiarity part might be harder. As I
said, it can make it tougher to talk about my prob-
lems. It could be really annoying to keep explaining
how my health is progressing because the outpatient
clinic already knows me and my case, so I don’t have
to repeat everything. But in adult oncology, I imag-
ine that might happen a lot. From my experience
with bone infarctions, going to different doctors over
and over is just a real hassle” (Transition survivor,
6,0 years after diagnoses)
Similarly, adult survivors recalled a lack of preparation
provided by the involved institutions and support dur-
ing their transition period. ey often felt abandoned
when moving to adult care services, so they stressed the
importance of emotional and psychological support dur-
ing the transition. ey also noted that having a mentor
or a transitional coordinator would have been beneficial.
e need for comprehensive access to medical histo-
ries and improved communication tools, such as digital
applications, was highlighted as essential and should be
provided by overseeing healthcare professionals, such as
general practitioners or oncologists.
“at was a big turning point for me. At some point,
I was told I was too old—I think I was around 19,
20, or 21. I can’t remember exactly. I guess I didn’t
fit into the usual pediatric clinic anymore. But it
would have been nice to keep seeing the same doc-
tors I’d had for years. In the end, I was just too old,
so I had to go somewhere else and find new doctors.
And those doctors seemed to change every two years.”
(Adult survivor, 18,1 years after diagnoses)
Similarly, parents emphasize the importance of trans-
ferring responsibility gradually to their children. ey
believe that this approach helps their children feel safe
and secure while building confidence in their ability to
manage their healthcare over time.
“He’s going to have to take on more personal respon-
sibility, like keeping track of his appointments. …
Right now, he’s always with me and at home, but
once he’s out on his own, he’ll need to handle a lot
more on his own. It’s not just about these appoint-
ments, but responsibility in all areas of his life.” (Par-
ent of survivor 2,6 years after diagnoses)
ey often see their role as ongoing supporters, ensur-
ing their children remain attentive to their health. ey
recognize the need for a balance between supporting
their child and allowing them to become independent.
“I see it as my job as a mom to help her feel ready to
go on her own next year. is year she said, ’Mom,
I’m 18, but I’m not going alone. You’re coming with
me.’ But from the individual conversations she had
without me during the appointment, she’s learned
that she can trust herself to go on her own.” (Parent
of survivor 6,7 years after diagnoses)
Discussion
is study explored the transition experiences and expec-
tations of survivors and their parents. e findings align
with the Social-Ecological Model of Readiness for Tran-
sition (SMART), which highlights multiple system-level
barriers and facilitators influencing the transition pro-
cess. ese include individual survivor factors such as
developmental maturity, knowledge, and self-efficacy, as
well as interconnected elements involving parents and
healthcare providers, such as expectations, relationships,
and psychosocial functioning parents [22]. Intercon-
nected constructs are particularly promising as targets
for interventions. Similarly, a systematic review of 15
studies conducted by Otth et al. [33] similarly defined
the following factors affecting the transition experiences
of pediatric cancer survivors: self-management skills,
social environment, subjective feelings, pediatric/adult
setting, financial issues and insurance, communication,
and structural circumstances including organization of
transition.
Developmental maturity was addressed in our research
through readiness for the transition. Adolescent sur-
vivors generally felt unprepared for the transition and
expressed a desire to choose the “right time” to begin
attending adult healthcare facilities on their own. Parents
shared a similar view, wanting to ensure that young sur-
vivors had developed self-efficacy skills to manage their
follow-up care before transitioning. ese findings align
with those of previous research indicating that self-effi-
cacy skills are crucial facilitators in the transition process
[33, 34]. Interestingly, adult survivors in our study retro-
spectively viewed the age-defined timing for transition as
appropriate, likely due to the self-management skills and
knowledge they developed over time while dealing with
late effects on their own.
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Ekaterinaetal. BMC Health Services Research (2025) 25:204
Previous research has identified knowledge defi-
cits about the disease and a lack of recognition of the
benefits of transition as primary barriers to a success-
ful transition (e.g. [5, 33, 35]). In our study, parents
acknowledged the need to gradually "empower" young
survivors by increasing their understanding of their
health condition and emphasizing the importance of
(long-term) follow-up care.
Within the SMART framework, expectations are
defined as a survivor’s trust in adult healthcare facilities
and the importance of long-term follow-up care. While
adolescent survivors in our study generally understood
the significance of long-term follow-up due to their par-
ents’ explanations, they expressed considerable doubts
about trusting adult healthcare facilities. ese findings
align with previous research, which indicates that sur-
vivors’ attachment to pediatric healthcare facilities can
hinder the transition and negatively impact their trust
in the quality of care provided by adult healthcare pro-
fessionals (e.g. [14, 33]). Adult survivors in our study
also noted that developing self-management skills by
handling their follow-up care independently contrib-
uted to their overall maturity. However, they felt that
emotional and psychological support during the transi-
tion would have been highly beneficial.
One of the primary goals within the SMART frame-
work for the transition process is to facilitate survivors’
autonomy. Previous research has shown that adoles-
cents who were not actively involved in their health-
care became dependent on their parents’ participation,
leading to a reliance on others for help [4, 36]. is
dependency fostered a passive role that continued into
adulthood, with parents still heavily involved in com-
municating with healthcare services as their children
matured. In our study, parents recognized the neces-
sity of gradually transferring responsibility for health-
care and interactions with providers to the survivors.
ey also emphasized the need for information to be
presented as child-friendly to aid this transition. is
aspect is closely linked to the relationships among sur-
vivors, parents, and healthcare providers. Previous
studies have indicated that parents experience "cross-
pressure" [6], balancing their child’s and healthcare
providers’ expectations while supporting their young
adult’s transition to independence. is might be
caused by complexities in building relationships with
new adult healthcare providers. Building a new rela-
tionship requires time and usually cannot be achieved
in just one consultation hour. Consequently, survi-
vors prefer to initiate this new relationship with adult
providers toward the end of their pediatric care while
they are still within the pediatric environment. Effec-
tive communication between survivors, healthcare
providers, and parents is also a crucial factor during the
transition from pediatric to adult care [19, 33].
Effective communication also contributes to enhanced
psychosocial functioning, which the SMART framework
interprets as emotions related to the transition process.
Adolescent survivors interviewed perceived this tran-
sition as a step into adulthood and a sign of maturity,
leading many of them to express concerns about their
readiness. ey worry about transitioning to unfamil-
iar adult healthcare providers and feel discouraged by
the need to repeatedly recount their cancer experiences,
which may bring up potentially traumatic memories. is
aligns with previous research, which suggests that young
adult survivors’ desire to move beyond their cancer expe-
rience can influence their participation in regular fol-
low-up appointments [19, 37]. Likewise, adult survivors,
reflecting on their various transition experiences, view it
as a crucial process that teaches self-reliance and inde-
pendence [38].
Implications
Our findings emphasize the need for a structured and
multidisciplinary approach to enhance the transi-
tion process for pediatric cancer survivors in Germany.
Early preparation is crucial, including tailored self-man-
agement training to empower survivors and gradual
responsibility transfer from parents. Collaborative efforts
between pediatric and adult providers are essential to
ensure continuity of care, with early introductions to new
providers during pediatric follow-up to foster trust and
reduce worries and restraints related to the transition
process.
Existing specialized multidisciplinary long-term fol-
low-up care in Germany should be expanded to improve
accessibility, enabling more survivors to benefit from
coordinated care. ese clinics, alongside digital tools
for tracking medical histories and appointments, can
facilitate a smoother transition. Survivors’ emotional and
psychological concerns related to the transition process
such as worries about new environments and recounting
medical histories as well as a relevant number of mental
health problems in this group [39], highlight the impor-
tance of transition coordinators and psychologists as
part of the multidisciplinary team ese findings under-
score the importance of psychological readiness and the
inclusion of survivors’ and parents’ perspectives, further
aligning with specialized guidelines’ recommendations
for organizing transitions and ensuring comprehensive,
patient-centered support [20].
Building on frameworks like SMART, interven-
tions should address readiness, communication, and
self-efficacy to align survivor experiences with sys-
tem demands. By enhancing these aspects, healthcare
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Page 10 of 12
Ekaterinaetal. BMC Health Services Research (2025) 25:204
systems can promote autonomy, sustain engagement in
follow-up care, and improve long-term outcomes for
survivors.
Strengths andlimitations
Our research expands upon existing knowledge by inves-
tigating perspectives from both adolescent and adult
survivors, as well as theirparents. is dual focus allows
for a more comprehensive understanding of the transi-
tion from pediatric to adult healthcare. One of the sig-
nificant strengths of our study is the involvement of a
multidisciplinary team of researchers. is team includes
experts in healthcare research, medical professionals, and
clinical psychologists, each contributing their special-
ized knowledge and insights. is collaborative approach
enriches the study’s depth and breadth, ensuring a more
nuanced and well-rounded analysis of the challenges and
needs associated with the transition process. By integrat-
ing diverse expertise, our research not only highlights
the varied experiences and expectations of survivors and
their parents but also provides a robust foundation for
developing targeted interventions to support this critical
transition.
We also recognize several limitations in our study.
First, participants might have felt constrained in shar-
ing negative information, potentially leading to socially
acceptable responses. To mitigate this, the interview
guidelines included a variety of question types. Second,
the interviews were conducted on a volunteer basis, pri-
marily in hospitals with established long-term follow-up
care structures. erefore, the perspectives collected
may not fully represent pediatric cancer survivors who
are unaware of the late effects of cancer in childhood and
adolescence or lack knowledge of (long-term) follow-
up care, and, consequently, are not actively involved in
(long-term) follow-up. Additionally, this could influence
responses, as survivors might fear harming their rela-
tionships with follow-up healthcare providers by giving
"undesirable" answers. us, this limitation may exclude
important perspectives on the barriers to transition and
emphasizes the need for future research to incorporate
a broader range of participants. Lastly, survivors may
not have been ready to fully disclose potential traumatic
experiences related to cancer or may still face stigma
associated with their condition, and their responses
could be constrained by the time elapsed since the transi-
tion and memory effects, particularly among older sur-
vivors. Moreover, responses could be affected by recall
bias, particularly among participants for whom a signifi-
cant amount of time had passed since their cancer diag-
noses, potentially limiting the accuracy and detail of their
recollections.
Conclusion
Our study highlights the critical importance of a well-
planned transition from pediatric to adult healthcare
for adolescent cancer survivors and their families. Key
findings reveal that the transition is perceived as a sig-
nificant step towards adulthood but is accompanied by
concerns regarding readiness and the anxiety of engag-
ing with new healthcare providers.
Survivors and their families expressed a preference
for starting the transition process early to build trust
and familiarity with adult providers, thus reducing
anxiety and improving engagement in follow-up care.
Aligning to the SMART framework our results under-
score the emotional and psychosocial dimensions of
the transition, identifying the need for strategies that
support survivors’ self-reliance and independence.
By addressing these factors, healthcare systems can
improve long-term outcomes for adolescent cancer
survivors, facilitating a smoother and more effective
transition to adult care.
Acknowledgments
We thank members of VersKiK-consortium for active participation and support
of the study: C. Spix, C. Ronckers, H. Merzenich, P. Ihle, J. Kuepper-Nybelen,
C. Luepkes, D. Horenkamp-Sonntag, U. Marschall, P. Droege, M. Klein. Special
thanks to survivors, their parents, and Dr. Med. A. Redlich (Paediatric Clinic,
University Hospital Magdeburg), who supported the study.
Clinical trial number
Not applicable.
Authors’ contributions
Conceptualization: EA, KB, TL, GC, ES; Methodology: EA, KB; Resources: EA, KB,
JG, TL; Data Curation: EA, KB; Writing Original-Draft: EA, KB; Writing-Review and
Editing: all authors; Project administration: EA, ES; Funding acquisition: TL, GC,
ES. All authors have read and approved the manuscript.
Funding
Open Access funding enabled and organized by Projekt DEAL. This study is
funded by the Federal Joint Committee (G-BA) Innovation Fund in Germany
(grant reference no. 01VSF19013) The funder has no role in the design of the
study and is not involved in its implementation, data analysis, and dissemina-
tion of results.
Data availability
The anonymised datasets analysed during the current study are available from
the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
The VersKiK study was approved by the Ethics Committee Otto von Guericke
University on 2.07.2021 (103/21), by the Ethics Committee of Johannes Guten-
berg University Mainz on 16.06.2021 (2021-16035), by the Ethics Committee
University of Lübeck on 10.11.2021 (21-451), by the Ethics Committee Univer-
sity of Hospital Bonn on 28.02.2022 (05/22). For each part of the qualitative
study, the Ethics Committees named above prepare and approve a separate
written informed consent.
Consent for publication
Not applicable.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 11 of 12
Ekaterinaetal. BMC Health Services Research (2025) 25:204
Competing interests
The authors declare no competing interests.
Received: 5 November 2024 Accepted: 24 January 2025
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