How mothers and fathers support adult childhood cancer survivors: parental attitudes, involvement, and motivation toward long-term follow-up care (results from the Swiss Childhood Cancer Survivor Study – Parents)

Vol.:(0123456789)
Suppo i e Ca e in Cance (2025) 33:992
h ps://doi.o g/10.1007/s00520-025-10040-8
RESEARCH
How mo he s and a he s suppo adul childhood cance su i o s:
pa en al a i udes, in ol emen , andmo i a ion owa dlong‑ e m
ollow‑up ca e ( esul s om heSwiss Childhood Cance Su i o
S udy – Pa en s)
JuliaBaenzige 1,2· AnicaIlic1· Tama aDiesch‑Fu lane o3· And éO. onBue en4,5· G i Somme 6· GiselaMichel1·
ManyaJ.Hend iks1
Recei ed: 15 June 2025 / Accep ed: 11 Oc obe 2025
© The Au ho (s) 2025
Abs ac
Pu pose Many childhood cance su i o s (CCS) do no a end long- e m ollow-up (LTFU) ca e. We examined (1) he
in ol emen o mo he s and a he s, (2) hei a i udes owa ds LTFU, (3) how hey mo i a ed hei adul child en o a end,
(4) and pa en s’ pe cep ions o he heal hca e p o essionals in ol ed and he decision o end LTFU ca e.
Me hods A popula ion-based sample (Swiss Childhood Cance Regis y) o pa en s o long- e m CCS (> 5yea s pos -
diagnosis, ≥ 20yea s a s udy) esponded o a ques ionnai e. Mul iple-choice and open-ended ques ions we e analysed using
desc ip i e s a is ics, chi2 compa isons, and quali a i e con en analyses.
Resul s O 302 amilies, 190 a he s (40.7%) and 276 mo he s pa icipa ed. One in ou (26.1%) pa en s we e in ol ed in
LTFU, p o iding medical, p e en a i e/p ac ical, and emo ional suppo (mo he s > a he s, p = 0.013). Pa en s o LTFU
a ende s we e pleased wi h a endance (94.3%), p o iding hem wi h eassu ance abou hei child’s heal h. Pa en s o
non-a ende s did no wish hei child a ended LTFU (74.7%), because o hei pe cep ions (e.g., ‘being cu ed’), espec o
he child’s decision, o he need o mo e on. Pa en s (53.5%) mo i a ed a ende s (mo he s > a he s, p = 0.002) by alking
abou impo ance, helping o schedule, and eminding. Gene al p ac i ione s (64.3%) and adul oncologis s (31.9%) mos
o en p o ided LTFU. The decision o end LTFU was made by he ea ing physician (53.4%), su i o s (18.4%), o sha ed
decision-making (17.5%).
Conclusion The e is unused po en ial o pa en s o mo i a e hei child en o pa icipa e in LTFU. The a ie y o LTFU
models can be di icul o na iga e; hus, wo king o imp o e isibili y and encou agemen migh help inc ease a endance.
Keywo ds Follow-up· Pa en s· Childhood cance · Coho · Heal h p omo ion· Long- e m
Gisela Michel and Manya J Hend iks join las au ho ship.
* Gisela Michel
[email p o ec ed]h
1 Facul y o Heal h Sciences andMedicine, Uni e si y
o Luce ne, Luce ne, Swi ze land
2 Hea Cen e o Child en, The Sydney Child en’s Hospi al
Ne wo k, Sydney, NSW, Aus alia
3 Depa emn o Pedia ic Oncology/Hema ology, Child en’s
Hospi al o Basel, Basel, Swi ze land
4 Depa men o Pedia icsGynecology andObs e ics,
Di ision o Gene al Pedia ics, Pedia ic Hema ology
andOncology Uni , Uni e si y Hospi als o Gene a, Gene a,
Swi ze land
5 Depa men o Pedia icsGynecology andObs e ics,
Cansea ch Resea ch Pla o m o Pedia ic Oncology
andHema ology, Facul y o Medicine, Uni e si y o Gene a,
Gene a, Swi ze land
6 Ins i u e o Social andP e en i e Medicine, Uni e si y
o Be n, Be n, Swi ze land
Suppo i e Ca e in Cance (2025) 33:992 992 Page 2 o 12
Abb e ia ions
CCS Childhood Cance Su i o s
CHF Swiss ancs
ICCC-3 In e na ional Classi ica ion o Child-
hood Cance – Thi d Edi ion
LTFU Long e m ollow-up
SCCR Swiss Childhood Cance Regis y
Swi ze land
SCCSS-Pa en s Swiss Childhood Cance Su i o S udy
– Pa en s
Backg ound
Childhood cance is a amily ma e . E en yea s a e
success ul ea men , pa en s may con inue o ha e con-
ce ns ela ed o cance elapse o la e e ec s, and emain
engaged in hei child’s long- e m ca e [1]. Fo example, in
Swi ze land, among adolescen childhood cance su i o s
(CCS, 11–17yea s), pa en al in ol emen was s ill wide-
sp ead (92%) [1]. Mo he s in pa icula a e o en epo ed
as accompanying hei child en o long- e m ollow-up
ca e (LTFU) isi s [2, 3]. Social no ms, including pa -
en s’ suppo and expec a ions, ha e been associa ed wi h
highe in en ion o LTFU a endance [4]. Gi en he li e-
long isk o medical la e e ec s, egula LTFU is essen-
ial [5, 6]. Ye , despi e ecommenda ions, ew CCS a end
LTFU [6–10].
Li le is known abou how pa en al in ol emen con-
inues once su i o s each adul hood, o which ac o s
in luence whe he mo he s and a he s emain engaged
and encou age su i o s’ a endance [11, 12]. The p esen
s udy add esses his gap by desc ibing pa en sel - epo ed
in ol emen in hei child’s LTFUca e and ype o spe-
cialis s consul ed.
Me hods
Aims & s udy design
In his c oss-sec ional s udy, we combined closed and
open-ended su ey ques ions o in es iga e: (1) pa en-
al in ol emen in hei adul child’s LTFU, (2) pa en-
al a i ude owa ds hei child’s LTFU a endance, and
(3) pa en al beha iou and easoning in mo i a ing hei
child o a end LTFU; including po en ial di e ences
among mo he s and a he s o long- e m CCS. Addi ion-
ally, we asked pa en s (4) which heal hca e p o essionals
a e in ol ed in he child’s LTFU o who decided o end
LTFU.
Popula ion
This s udy is pa o he Swiss Childhood Cance Su i o
S udy on he heal h and well-being o Pa en s o long- e m
CCS (SCCSS-Pa en s) [13]. A popula ion-based sample
o pa en s o long- e m CCS was iden i ied a he Swiss
Childhood Cance Regis y o Swi ze land (SCCR, h ps://
www. child hoodc ance egis y. ch) [14]. Eligibili y c i e ia
included being a pa en o a child (≤ 16yea s old and
Swiss esiden a cance diagnosis, a leas i e yea s pos -
diagnosis and o ea men , and ≥ 20yea s old in 2016).
P ocedu e
Pa en s o 575 long- e m CCS ecei ed an in o ma ion le e
om hei o me ea ing clinic wi h an in i a ion o pa -
icipa e (Fig.1). Two weeks la e , each pa en was in i ed
o comple e a ques ionnai e indi idually. Non- esponde s
ecei ed up o wo eminde s, sen app oxima ely wo and
en weeks la e (01.2017–02.2018). S udy ma e ials we e
a ailable in Ge man, F ench, o I alian o co e he main
na ional languages. Re u ned ques ionnai es we e en e ed in
EpiDa a, wi h 10% double-en ed o ensu e accu acy.
Fig. 1 Rec ui men lowcha o pa icipa ing pa en s o childhood
cance su i o s (CCS, aged > 20yea s) o s udy long- e m in ol e-
men in long- e m ollow-up ca e
Suppo i e Ca e in Cance (2025) 33:992 Page 3 o 12 992
Measu emen s
LTFU
Pa en s epo ed whe he hei child s ill a ended LTFU:
yes, egula ly; yes, i egula ly; no; o unawa e. Pa en s who
esponded o ques ions abou hei child’s LTFU a endance
we e ca ego ized in o pa en s o a ende s ( egula /i egula )
and pa en s o non-a ende s (no/unawa e). Pa en s who epo ed
being unawa e o hei child’s LTFU s a us we e ca ego ized
as non-a ende s, because lack o awa eness was conside ed o
indica e absence o pa en al engagemen in LTFU.
Pa en al in ol emen in LTFU: Pa en s epo ed whe he
hey we e in ol ed (yes/no) and how (open ques ion).
A i ude owa ds LTFU a endance: Pa en s o a ende s
epo ed whe he hey a e pleased (yes/no/unsu e) abou hei
child’s a endance, and pa en s o non-a ende s, whe he hey
would desi e ha hei child a ends LTFU (yes/no). Reasons o
hei a i udes owa ds LTFU we e assessed in an open ques ion.
Mo i a ing: Pa en s epo ed i hey a e mo i a ing hei child
o a end LTFU (yes/no), and how (open ques ion). Non-mo i-
a ing pa en s we e asked o desc ibe hei easoning (Fig.2).
Heal hca e p o essionals in ol ed: Pa en s o a ende s
we e asked o indica e which heal hca e p o essionals we e
in ol ed in he child’s LTFU (mul iple choice: gene al p ac i-
ione , paedia ic oncologis , adul oncologis , gynaecologis ,
endoc inologis , oph halmologis , neu ologis , neph ologis ,
and ‘o he ’ o speci y addi ional p o essionals). Pa en s o
non-a ende s we e asked who decided o end LTFU (we [pa -
en s]/my child/paedia ic oncologis /o he [ o be speci ied]).
Cance ‑ ela ed cha ac e is ics
Cance - ela ed cha ac e is ics we e a ailable om he
SCCR: cance diagnosis, ea men , age a diagnosis [yea s],
ime since diagnosis [yea s], and elapse (yes/no). Cance
diagnoses we e classi ied acco ding o he ICCC-3 [15] and
ca ego ized in o leukaemia, lymphoma (including Lange -
hans cell his iocy osis), cen al ne ous sys em umou ,
and solid umou . T ea men was ca ego ized in o: su ge y
only, chemo he apy (may ha e had su ge y), adio he apy
(may ha e had su ge y and/o chemo he apy), and s em cell
ansplan a ion (may ha e had su ge y and/o chemo he apy
and/o adio he apy). Pa en s indica ed in he ques ionnai e
whe he hei child expe ienced la e e ec s (yes/no).
Pa en al cha ac e is ics
Pa icipan s epo ed hei pa en al ole (Mo he /Fa he ), age
(yea s), ques ionnai e language (Ge man/F ench/I alian),
mig a ion backg ound (de ined as no being a Swiss ci izen,
no a Swiss ci izen since bi h, o no bo n in Swi ze land),
educa ion (compulso y schooling/ oca ional aining/uppe
seconda y o uni e si y deg ee), employmen s a us (yes/no
[includes in educa ion and e i emen ]), mon hly household
income in Swiss ancs (CHF, < 6000/≥ 6000), numbe o
child en (≤ 2/> 2), ci il s a us (single/ma ied/widowed o
di o ced), whe he hey we e li ing in a pa ne ship (yes/
no), and whe he hey pe cei ed hemsel es and hei child
as ha ing a ch onic heal h condi ion (yes/no) [14].
Fig. 2 Themes used in he open-ended ques ions aiming o be e unde s and pa en al in ol emen in long- e m ollow-up o adul childhood
cance su i o s. Abb e ia ions: LTFU, long- e m ollow-up; HCP, heal hca e p o essional
Suppo i e Ca e in Cance (2025) 33:992 992 Page 4 o 12
Analysis
To quali a i ely desc ibe Aim 1–3 (pa en s in ol emen , a i-
ude, mo i a ing hei child), open-ended esponses we e ana-
lysed using he p inciples o con en analysis wi h ATLAS. i
22 [16, 17] ollowing he app oach om Kucka z [18]. Fi s ,
AI and MH amilia ized hemsel es by eading all answe s o
one o he ques ions, and de eloped a coding scheme oge he
by combining deduc i e (de i ed om ou esea ch ques-
ions) and induc i e codes (de i ed om he da a). Second,
p elimina y codes we e assigned o all ques ions indepen-
den ly, by ei he AI o MH, c ea ing addi ional codes whe e
necessa y (induc i e and deduc i e phases). To ensu e
igo , all au ho s exchanged iles and e iewed he iden i ied
codes, discussing hem in i e a i e mee ings, and esol ing
disc epancies un il consensus was eached o e ine he cod-
ing scheme. Thi d, AI and MH collabo a i ely inalized he
coding guide. Finally, he codes we e ca ego ized in o o e -
a ching hemes p esen ed in he esul s a e a discussion
wi h all au ho s, and ep esen a i e quo es we e selec ed.
To ensu e he accu acy o pa icipan s’ quo es, back- o-back
ansla ion was pe o med [19]. Fo aim 4 (heal hca e p o es-
sionals and end o LTFU) we g ouped and coun ed simila
p o essions. To desc ibe he s udy popula ion (Table1) and
Aim 4 (Table3), we used desc ip i e s a is ics. We compa ed
mo he s’ and a he s’ answe s using chi2 es s. All s a is ical
analyses we e pe o med using S a a 16.0
Resul s
S udy popula ions
O he 575 con ac ed amilies, we ecei ed a esponse om
a leas one pa en o 308 amilies (53.6% esponse a e,
Table1;Fig.1; esponde s did no signi ican ly di e om
non- esponding pa en s in socio-demog aphic and cance -
ela ed cha ac e is ics as published in Baenzige e al. [20].
O 478 esponding pa en s, 12 did no answe he ques ions
ega ding LTFU. This s udy includes 466 pa en s –190
a he s (40.8%) and 276 mo he s (59.2%)– o 302 long-
e m CCS (55.3% male). Pa en s’ mean age was 62.3yea s
(s anda d de ia ion (SD): 6.9yea s, ange 45–85, Table1).
Mean ime since CCS’ diagnosis was 24.9yea s (SD: 7.1,
7.8–40.9yea s; Table2). CCS’ a e age age a s udy was
32.3yea s (SD: 6.4, ange: 21–54). O he 466 pa en s, 157
(33.7%, 98 mo he s and 59 a he s) epo ed ha hei child
a ended LTFU (a ende s), while 309 (66.3%, 178 mo he s
and 131 a he s) s a ed ha hei child does no a end LTFU
o ha hey a e unawa e o i (non-a ende s).
Table 1 Socio-demog aphic cha ac e is ics o pa en s o long- e m
childhood cance su i o s
Abb e ia ions: Unknown, alues a e missing; n, numbe
Pa en s o Childhood Cance Su i o s (N = 466)
n%
Gende
Mo he 276 59.2
Fa he 190 40.8
Age ca ego y, yea s
36–55 71 15.2
56–65 238 51.1
66 + 153 32.8
Unknown 4 0.9
Language
Ge man 344 73.8
F ench 105 22.5
I alian 17 3.7
Mig a ion backg ound
No 384 82.4
Yes 56 12.0
Unknown 26 5.6
Ci il S a us
Single 5 1.1
Ma ied 369 79.2
Widowed/Di o ced 64 13.7
Unknown 28 6.0
Pa ne ship
No 43 9.2
Yes 404 86.7
Unknown 19 4.1
Employmen
No 196 42.1
Yes 252 54.1
Unknown 18 3.9
Educa ion
Compulso y schooling 53 11.4
Voca ional T aining 224 48.1
Uppe seconda y/Uni e si y 146 31.3
Unknown 43 9.2
Numbe o child en
Two o less 214 45.9
Mo e han wo 212 45.5
Unknown 40 8.6
Household Income
Up o and including 6000 CHF 325 69.7
Mo e han 6000 CHF 105 22.5
Unknown 36 7.7
Suppo i e Ca e in Cance (2025) 33:992 Page 5 o 12 992
Aim 1: Pa en al in ol emen inLTFU ca e
Among pa en s o a ende s, 114 (73.9%) s a ed no being
in ol ed in hei child’s LTFU, while 41 (26.1%) emained
in ol ed. Mo e mo he s we e in ol ed han a he s (n = 32
(33.3%) s. n = 9 (15.3%); χ2 (1,N = 155) = 6.14, p = 0.013,
Fig.3). In he open-ended ques ions, pa en s epo ed ha hei
in ol emen in ollow-up a endance en ailed medical asks,
such as ac i e communica ion wi h he physician, checking
esul s and moni o ing medica ion. They also desc ibed
p e en a i e and p ac ical con ibu ions, including p o iding
su i o s wi h in o ma ion and eminding hem abou upcoming
appoin men s). Finally, pa en s emphasized hei emo ional ole,
suppo ing hei child h ough open communica ion, o e ing
a sense o secu i y, and discussing impac o esul s (Table3).
Aim 2: Pa en al a i ude owa dLTFU a endance
Among pa en s o a ende s, 148 (94.3%) we e pleased ha
hei child a ended LTFU, i e unsu e (3.2%), ou no
answe ing (2.5%), and none endo sing ‘no’. P opo ions (yes s.
unsu e) we e simila among mo he s: n = 92 s. 2 and a he s:
n = 56 s. 3 (χ2 no es ed gi en he small subg oups; Figu e3).
Reasons o desi ing LTFU a endance included medical,
p e en ion and p ac ical, emo ional, au onomy- ela ed, and
ela ionship easons (Table3). Pa en s mos o en e e ed
o medical easons, such as p e en ing elapse, moni o ing
o la e e ec s o seconda y malignancies, and managing
side e ec s o main ain good heal h. P e en ion and p ac ical
conside a ions we e also emphasized, wi h se e al pa en s
epo ing ha a endance helped placa e ea s o elapse
o new heal h complica ions, especially as he cance
diagnosis da ed back many yea s. Emo ional easons we e
equally impo an . Pa en s desc ibed a “sense o secu i y
ha all is going well” when hei child a ended LTFU, and
some highligh ed ha hei child had el abandoned a e
ea men , which ein o ced he impo ance o con inuing
ollow-up. Au onomy- ela ed conside a ions also eme ged,
wi h some pa en s explaining ha hey pe sonally did no
see ollow-up as necessa y bu ne e heless espec ed hei
child’s au onomous decision o a end. Finally, ela ionship
ac o s in luenced pa en al suppo . Some alued ha he
specialis al eady knew hei child’s medical his o y, which
made ollow-up isi s pa icula ly meaning ul.
Among pa en s o non-a ende s, 230 (74.4%) pa en s
did no desi e hei child o a end LTFU, 43 (13.9%) pa en s
desi ed CCS o a end, and 36 (11.7%) did no answe .
P opo ions desi ing a endance (yes s. no) we e simila
among mo he s (n = 24 s. n = 133) and a he s (n = 19 s.
n = 97, χ2(2, N = 309) = 0.07, p = 0.996, Fig.3). Explana ions
o no desi ing hei child o a end LTFU also ollowed
he same easoning (Table3). F om a medical pe spec i e,
many pa en s el ha ou ine medical isi s we e su icien ,
o ha hei child was “comple ely cu ed”, o en ci ing long-
e m emission, a physician’s eassu ance, o he o mal end
o LTFU. Some e en belie ed ha hei child’s heal h isks
we e no di e en om pee s wi hou a cance his o y. Some
speci ic medical cha ac e is ics – such as benign umou s,
no symp oms, and eeling heal hy – we e also men ioned
as easons o no wishing o con inue LTFU ca e. P ac ical
a gumen s included eliance on medical checks p o ided
by an employe , which we e seen as an adequa e subs i u e.
Emo ional mo i es cen ed on he wish o mo e on. Pa en s
spoke o he need o o ge he di icul pe iod o illness,
main ain a posi i e mindse , and a oid ins illing ea h ough
con inued hospi al isi s. While some pa en s ea ed bad
news, o he s we e con iden abou hei child’s heal h and el
a endance was unnecessa y. Finally, au onomy- ela ed easons
we e again impo an , wi h pa en s s essing ha su i o s
Table 2 Cance - ela ed cha ac e is ics o long- e m childhood cance
su i o s
Abb e ia ions: ICCC-3; In e na ional Classi ica ion o Childhood
Cance – Thi d edi ion; CNS, Cen al Ne ous Sys em; n, numbe ;
SD, s anda d de ia ion;† Pa en - epo ed
Childhood Cance Su i o s (N = 302)
n%
Gende
Female 135 44.7
Male 167 55.3
Diagnosis (ICCC-3)
Leukaemia 102 33.8
Lymphoma 55 18.2
CNS umou 37 12.3
Neu oblas oma 13 4.3
Re inoblas oma 9 3.0
Renal umou 20 6.6
Hepa ic umou 6 2.0
Bone umou 14 4.6
So issue sa coma 22 7.3
Ge m cell umou 9 3.0
Lange hans cell his iocy osis 15 5.0
T ea men
Su ge y 35 11.6
Chemo he apy 166 55.0
Radio he apy 82 27.2
S em cell ansplan a ion 19 6.3
La e e ec s†
No 179 59.3
Yes 112 37.1
Unknown 11 3.6
Mean (SD) Range
Age a diagnosis, yea s 6.9(4.5) 0–15
Age, yea s 32.3(6.4) 21–54
Time since diagnosis, yea s 24.9(7.1) 7.8–40.9

Suppo i e Ca e in Cance (2025) 33:992 992 Page 6 o 12
Fig. 3 Pa en s’ in ol emen , a i ude, and mo i a ion ega ding long- e m ollow-up ca e o adul childhood cance su i o s
Suppo i e Ca e in Cance (2025) 33:992 Page 7 o 12 992
Table 3 Themes o in ol emen , a i ude, and mo i a ion o long- e m ollow-up ca e o pa en s o childhood cance su i o s and co esponding quo es
Medical P e en ion and p ac ical Emo ional Au onomy- ela ed Rela ionship
AIM 1. PARENTAL INVOLVEMENT
A e you cu en ly
in ol ed in you child’s
ollow-up? I yes, in
which o m?
I'm checking ha she's
aking he medicines
as well as possible and
email con ac wi h he
endoc inologis
Mo he o 19-yea
su i o
Accompany o all doc-
o 's appoin men s and
p o ide linguis ic sup-
po as well as o ganise
anspo se ices
Mo he o 39-yea
su i o
We alk abou esul s o
he doc o 's isi
Fa he o 41-yea su -
i o
n.a n.a
AIM 2. PARENTAL ATTITUDES
I would like my child o
a end LTFU, because: Because he e a e s ill
hea p oblems, o ho-
pedic p oblems ha
a e no managed by he
ea ing medical doc o
ha ea s my daugh e
Mo he o 18-yea
su i o
To de ec a possible
elapse as soon as
possible
Mo he o 26-yea
su i o
The e is always some ea
(unce ain y)
Fa he o 31-yea su -
i o
He is an adul and has o decide o himsel
Mo he o 12-yea su i o
Since i has been so long
and he doc o s know he
Fa he o 19-yea su i o
I would NOT like my
child o a end LTFU,
because:
Ou son is cu ed
Fa he o 22-yea su -
i o
Ou daugh e sees he
amily doc o egula ly
and is well ca ed o .
He has wo “holis ic”
eyes on he heal h
Mo he o 22-yea
su i o
A one poin , you ha e o
be inished, in o de o
ge some dis ance
Mo he o 21-yea
su i o
Tha is his decision, and I espec i
Fa he o 13-yea su i o
n.a
AIM 3. REASONS FOR MOTIVATING OR NOT
I mo i a e my child o
a end LTFU, by means
o :
I ask and ell him how
impo an he ollow-
up is
Mo he o 30-yea
su i o
I emind he o he
annual check-ups she is
equi ed o pe o m bu
she willingly does hem
Mo he o 14-yea
su i o
I suppo he wish o ollow-up because i gi es he
(momen a y) secu i y and i is a p e en ion o he
Mo he o 22-yea old su i o
I emind he o he
annual check-ups, bu
she does hem olun a -
ily
Mo he o 16-yea
su i o
We openly alk abou i
Mo he o 23-yea su i o
I do NOT mo i a e my
child o a end LTFU,
because o :
Disease da es back
app ox. 30yea s,
he apy ully comple ed
Fa he o 29-yea su -
i o
Is no necessa y, o he
i is absolu ely clea o
do his e e y yea
Mo he o 14-yea
su i o
Because i would ep esen an emo ional bu den o
he child
Fa he o 23-yea su i o
Because he is an adul
and can decide o him-
sel whe he he wan s
o go o a ollow-up
check!
Mo he o 22-yea
su i o
n.a
AIM 4. HEALTHCARE PROFESSIONALS INVOLVED; mul iple men ions possible
Suppo i e Ca e in Cance (2025) 33:992 992 Page 8 o 12
Table 3 (con inued)
Medical P e en ion and p ac ical Emo ional Au onomy- ela ed Rela ionship
Speciali ies Mos common
Gene al/ amily p ac i ione s (64.3%, n = 101)
Adul oncologis s (31.9%, n = 50)
Common subspecialis s
Endoc inologis (20.4%, n = 32)
Oph halmologis (19.7%, n = 31)
Gynecologis (16.6%, n = 26)
Pedia ic oncologis (13.4%, n = 21)
Neu ologis (10.8%, n = 17)
Neph ologis (5.1%, n = 8)
Psychologis o psycho he apis (4.5%, n = 7)
Fu he specialis s
De ma ologis (n = 5)
Ca diologis (n = 4)
Gas oen e ologis (n = 3)
Die ician (n = 3)
O o hinola yngology (n = 3)
A p e iously ea ing hospi al (n = 3)
O hopedis (n = 2)
O ologis (n = 2)
Pain managemen (n = 1)
And ologis (n = 1)
U ologis (n = 1)
Den is (n = 1)
P e ious su geon (n = 1)
Nu se (n = 1)
Ending LTFU Decision Make
T ea ing physician o hospi al (53.4%, n = 165 o
309)
Childhood cance su i o (18.4%, n = 57)
Pa en s 5.2% (n = 16)
Pa icipa i e decision: heal hca e p o essionals,
pa en s, and some imes including he CCS (17.5%,
n = 54)
Reasons o ending LFTU
Lack o p omp s
Long ime since childhood cance
Insu ance
School con lic s
Suppo i e Ca e in Cance (2025) 33:992 Page 9 o 12 992
we e “old enough” o make hei own decisions — whe he
ha mean con inuing o discon inuing LTFU —depending
on hei age o cogni i e ma u i y.
Aim 3: Mo i a ing hei adul child’s LTFU
a endance
Among pa en s o a ende s, 78 (49.7%) s a ed o mo i a e
hei adul child o a end LTFU, while 49 (30.2%) s a ed no o
mo i a e hei child. Mo he s o a ende s we e mo e likely o
mo i a e hei child en han a he s (59.2%, n = 58 s. 33.9%,
n = 20, χ2(1,N = 127) = 11.40, p = 0.002, Fig.2). Among he
43 pa en s o non-a ende s who desi ed CCS o a end 46.5%
(n = 20; 9 mo he s, 11 a he s, χ2(1,N = 38) = 0.45, p = 0.504])
epo ed ying o mo i a e hei child o a end LTFU.
O e all, bo h pa en s who mo i a ed o chose no o mo i-
a e hei child en e e ed o medical, p e en ion and p ac ical,
emo ional, au onomy- ela ed, and ela ional aspec s (Table3).
When pa en s desc ibed ways o mo i a ing hei child – o
bo h a ende s and non-a ende s o LTFU ca e –, some high-
ligh ed medical easons, such as a amily his o y o unexpec ed
childhood cance , which unde sco ed o hem he impo ance o
moni o ing heal h and a ending LTFU. O he s ocused on p e-
en ion and p ac ical suppo , such as helping wi h scheduling
appoin men s o e en con ac ing physicians di ec ly. Emo ional
mo i es we e also p esen , wi h pa en s encou aging a endance
because i o e ed bo h, hem and hei child, a sense o secu i y.
Some pa en s emphasized au onomy- ela ed suppo , no ing ha
hei child en we e al eady independen in a anging hei own
ollow-up, while o he s desc ibed ela ional s a egies, such as
engaging hei child in con e sa ions abou he impo ance o
LTFU. Con e sely, pa en s who epo ed no mo i a ing hei
child mos o en e e ed o medical a gumen s, s a ing ha
many yea s had passed since diagnosis o cu e – some imes 10
o 30yea s – and hus hey did no pe cei e LTFU as necessa y.
P ac ical easons we e also ci ed, wi h some pa en s simply no -
ing “no need” o a endance. In e ms o emo ional easons,
se e al explained ha illness emained a “ aboo opic” in hei
amily o ea ed ha eminde s migh emo ionally dis ess hei
child. Finally, au onomy- ela ed pe spec i es we e cen al.
Many s essed hei child’s adul hood, independence, and igh
o decide whe he o a end, and accep ed hei child’s choice
e en i his mean o egoing LTFU.
Aim 4. Heal hca e p o essionals in ol ed inLTFU
andwho decided oend LTFU
Pa en s o a ende s epo ed a a ie y o heal hca e
p o essionals in ol ed in LTFU, including gene al/ amily
p ac i ione s (64.3%, n = 101), adul hood oncologis s
(31.9%, n = 50), and/o subspecial ies, including
psychologis s and psycho he apy (n = 7, 4.5%) (Table3).
This highligh s ha ollow-up ca e is o en p o ided
ac oss di e en p o essional g oups. Pa en s o non-
a ende s epo ed ha he decision o end LTFU ca e had
been aken by he ea ing physician o hospi al (53.4%,
n = 165) o hei child 18.4% (n = 57). Only 5.2% (n = 16)
epo ed hey (as pa en s) had decided, and 17.5% (n = 54)
men ioned a pa icipa i e decision, be ween he heal hca e
p o essionals, pa en s, and some imes he CCS. In o he
wo ds, he decision o end LTFU was mos o en ini ia ed
by heal hca e p o essionals, bu in some cases su i o s
hemsel es o sha ed decision-making p ocesses played
a ole. Explana ions o ending LTFU included sys emic
ac o s a he mac o le el, such as insu ance co e age
issues, he mesosys em, such as he lack o in i a ions
by he clinics o LTFU and school con lic s, as well as
pe sonal ac o s a he mic o le el such as he long ime
since he cance expe ience and su i o s’ age.
Discussion
This s udy desc ibed pa en s’ pe spec i es ega ding LTFU
o long- e m CCS. Only ew pa en s o adul CCS emained
in ol ed in hei adul child’s LTFU. Mo he s we e mo e
o en in ol ed and mo i a ing hei child han a he s. While
mos pa en s o a ende s we e pleased wi h hei child’s
LTFU a endance, only a qua e o pa en s o non-a ende s
wished ha hei child a ended LTFU.
Ou indings echo p e ious s udies wi h pa en s
epo ing eeling ‘abandoned’ by he heal hca e sys em
sho ly a e ea men end, [21] and s uggling o iden i y
whe e hei child could ob ain LTFU [22]. Pa en s may
no be ully awa e o di e en LTFU models a ailable
since LTFU is o en no s anda dised no sys ema ically
implemen ed [23–27]. Pa en s can pass on his knowledge
o CCS only i hey unde s and he local sys em in place.
A s anda dized ansi ion app oach om paedia ic ca e
o LTFU may help op imize he success ul ans e [21].
A su i o ship passpo , as highligh ed in s udies om
he US, Aus alia, New Zealand, and he EU, [28–30]
con aining in o ma ion on he cance his o y, medical
ea men s, and ecommenda ions o LTFU [31] may
ep esen a use ul ool o guide pa en s and empowe
CCS wi h g owing independence and sel -managemen .
Ideally, open communica ion be ween pa en and child
should be suppo ed. Howe e , as CCS g ow olde ,
hey migh eel uncom o able sha ing heal h- ela ed
o psychological expe iences wi h hei pa en s. This
highligh s he need o a nuanced unde s anding o
pa en al in ol emen : suppo may include bo h ac i e
encou agemen and espec ul wi hd awal as su i o s
ake owne ship o hei ollow-up ca e [32]. No h
Ame ican s udies show ha pa en al in ol emen adap ed
o he young pe sons’ de elopmen al s age was ound