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Insurance, legal, and financial hardships of childhood and adolescent cancer survivors—a systematic review

November 2024
Journal of Cancer Survivorship

DOI:10.1007/s11764-024-01710-3

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CC BY 4.0

Authors:

Martina Ospelt

University of Lucerne

Pauline Holmer

University of Potsdam

Eva Maria Tinner

Inselspital, Universitätsspital Bern

Luzius Mader

University of Bern

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Purpose Childhood and adolescent cancer survivors (CACS) experience medical and psychosocial adverse effects. Attention widens to include issues such as socio-bureaucratic hardships. This systematic review synthesized the available evidence on insurance, legal, and financial hardships to better understand the broader picture of socio-bureaucratic hardships as distinct but interrelated types of hardships. Methods A systematic search of PubMed, Scopus, CINAHL, and PsycINFO was conducted for publications related to childhood and adolescent cancer; survivors; and insurance, legal, and financial hardships. Narrative data synthesis was performed on the extracted data. Results This review included N = 58 publications, originating from 14 different countries, most from the last decade (n = 39). We found that a considerable proportion of CACS experience insurance and financial hardships, including foregoing medical care due to financial constraints, problems paying medical bills, and difficulties accessing loans or insurances. Legal hardships, such as workplace discrimination, were less frequently investigated and reported. Conclusions This systematic review highlights the many interrelated socio-bureaucratic hardships faced by CACS. It is important that these hardships are not underestimated or neglected. Our findings can serve as a basis for enhancing and expanding supportive care services and help inform collaborative efforts from research, policy, and practice. Implications for Cancer Survivors This review emphasizes the importance of recognizing and addressing the socio-bureaucratic challenges that extend beyond medical care. Survivors should be informed about available options and be aware of their legal rights to identify instances of injustice and seek appropriate support.

PRISMA flow diagram. aCombined search for survivors and parents. The hardships experienced by parents are discussed in another publication

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Insurance, legal, and financial hardships—an overview

…

Overview of risk factors for insurance, legal, and financial hardships after childhood cancer as described in included publications

…

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Vol.:(0123456789)

Journal of Cancer Survivorship

https://doi.org/10.1007/s11764-024-01710-3

REVIEW

Insurance, legal, andﬁnancial hardships ofchildhood andadolescent

cancer survivors—a systematic review

MartinaOspelt1· PaulineHolmer1· EvaMariaTinner2,3· LuziusMader4· ManyaHendriks1· GiselaMichel1·

SonjaKälin1· KatharinaRoser1

Received: 16 October 2024 / Accepted: 4 November 2024

Abstract

Purpose Childhood and adolescent cancer survivors (CACS) experience medical and psychosocial adverse eﬀects. Attention

widens to include issues such as socio-bureaucratic hardships. This systematic review synthesized the available evidence on

insurance, legal, and ﬁnancial hardships to better understand the broader picture of socio-bureaucratic hardships as distinct

but interrelated types of hardships.

Methods A systematic search of PubMed, Scopus, CINAHL, and PsycINFO was conducted for publications related to

childhood and adolescent cancer; survivors; and insurance, legal, and ﬁnancial hardships. Narrative data synthesis was

performed on the extracted data.

Results This review included N = 58 publications, originating from 14 diﬀerent countries, most from the last decade (n = 39).

We found that a considerable proportion of CACS experience insurance and ﬁnancial hardships, including foregoing medical

care due to ﬁnancial constraints, problems paying medical bills, and diﬃculties accessing loans or insurances. Legal hard-

ships, such as workplace discrimination, were less frequently investigated and reported.

Conclusions This systematic review highlights the many interrelated socio-bureaucratic hardships faced by CACS. It is

important that these hardships are not underestimated or neglected. Our ﬁndings can serve as a basis for enhancing and

expanding supportive care services and help inform collaborative eﬀorts from research, policy, and practice.

Implications for Cancer Survivors This review emphasizes the importance of recognizing and addressing the socio-bureau-

cratic challenges that extend beyond medical care. Survivors should be informed about available options and be aware of

their legal rights to identify instances of injustice and seek appropriate support.

Keywords Socio-bureaucratic hardships· Financial hardships· Insurance hardships· Legal hardships· Childhood cancer·

Systematic review

Introduction

Navigating the health care system has been shown to be

challenging [1]. For those who have been aﬀected by child-

hood and adolescent cancer, it can be even more diﬃcult

[2]. Survivors of childhood and adolescent cancer (CACS)

face diﬃculties with insurance, legal, and ﬁnancial hard-

ships. Insurance hardships as a consequence of cancer may

include diﬃculties obtaining and maintaining insurance

[3–5] or paying higher premiums [6, 7]. Discrimination and

limited access to public services have been described as

legal hardships [8]. In relation to cancer, this may involve

more diﬃcult access to appropriate education, employment,

rehabilitation, dental plans, disability beneﬁts, and insurance

[8]. Financial hardships can be speciﬁed as experiencing

Sonja Kälin and Katharina Roser have shared last authorship.

* Katharina Roser

katharina.roser@unilu.ch

1 Faculty ofHealth Sciences andMedicine, University

ofLucerne, Lucerne, Switzerland

2 Division ofPediatric Hematooncology, Inselspital, University

Hospital Bern, Bern, Switzerland

3 University Center ofInternal Medicine, Kantonsspital

Baselland, Liestal, Switzerland

4 Cancer Registry Bern Solothurn, University ofBern, Bern,

Switzerland

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Journal of Cancer Survivorship

ﬁnancial distress due to the cancer diagnosis or treatment

[9]. Financial burden can be categorized into material,

behavioral, and psychological hardship [10], such as the ina-

bility to pay for medical care, delaying or forgoing care, and

worries regarding ﬁnances and insurance coverage [10, 11].

CACS report higher out-of-pocket medical expenses

[12, 13], are more often uninsured [4, 13], face diﬃculties

obtaining life insurance [14, 15], and have a higher uptake

of social security or disability beneﬁts [16]. Insurance and

ﬁnancial hardships are shown to potentially exacerbate or

cause physical and psychological harm to CACS including

stress, anxiety, and impaired sleep [4, 13, 17]. Moreover,

the physical and psychological late eﬀects associated with

childhood and adolescence cancer may further contribute

to insurance, legal, or ﬁnancial hardships. Additional risk

factors, such as low income, pre-existing ﬁnancial diﬃ-

culties, unemployment, or lack of a social network, may

also increase the risk of encountering these hardships [10,

17–19].

While medical and psychosocial adverse eﬀects have

been extensively investigated, less attention has been paid

to socio-bureaucratic hardships experienced by CACS [20,

21]. This systematic review explored insurance, legal, and

ﬁnancial hardships as three distinct but interrelated types of

hardships. With this systematic review, we aimed to provide

a comprehensive overview of socio-bureaucratic hardships

faced by CACS. More speciﬁcally, we aimed to describe

(i) evidence on insurance, legal, and ﬁnancial hardships

reported by CACS and (ii) risk factors associated with the

respective hardships. By covering three intertwined and

mutually inﬂuencing topics, rather than examining them

separately, we aimed to gain a better understanding of the

broader picture of socio-bureaucratic hardships experienced

by CACS and associated risk factors.

Methods

This review complies with the Preferred Reporting Items

for Systematic Reviews and Meta-Analysis (PRISMA)

guidelines [22] and was preregistered on PROSPERO (No.

CRD42023423759).

Literature search

We systematically searched the electronic databases Pub-

Med, CINAHL, Scopus, and PsychINFO using the four

blocks insurance, legal, or ﬁnancial hardships; survivors

or parents; childhood and adolescence; and cancer (Sup-

plemental appendix A). The search blocks were adapted for

each database. The databases searched were selected based

on their diﬀerent thematic focus to identify relevant publi-

cations from relevant areas. Eligible for this review were

peer-reviewed publications that examined the insurance,

legal, or ﬁnancial hardships of CACS. Although the sys-

tematic search included both survivors and parents, the cur-

rent review only includes publications focused on survivors.

Hardships experienced by parents are discussed in another

publication. The search was conducted on March 16, 2023,

and updated on June 24, 2024.

Selection criteria

We included peer-reviewed, original research publications

on insurance, legal, and ﬁnancial hardships of adult CACS.

At least 2years had to have passed since diagnosis and sur-

vivors had to have received their cancer diagnosis before

the age of 18 (≥ 75% of sample, or separate analyses). As

insurance, legal, and ﬁnancial hardships, we have consid-

ered diﬃculties or problems experienced by CACS in these

areas that result from childhood and adolescent cancer and/

or cancer-related consequences. The publication selection

criteria (Supplemental appendix B) were applied hierarchi-

cally to select eligible publications.

Publication screening

In a ﬁrst step, duplicates were manually removed using the

non-automated web tool Rayyan (https:// rayyan. ai/). In a

second step, titles and abstracts of all identiﬁed publica-

tions were independently screened by at least two reviewers

(MO, PH, SK, KR). Rayyan was used to track reviewers’

decisions. Then full texts of potentially relevant publica-

tions were obtained and independently reviewed in a sepa-

rate Rayyan bibliography by at least two reviewers (MO, PH,

SK, KR). Disagreements were resolved by discussion among

the reviewers (MO, PH, SK, KR).

Data extraction

Data extraction was conducted by the ﬁrst author (MO) and

double checked by another researcher (PH, SK, KR). Study

characteristics (e.g., country, language, study design, sam-

ple size), survivor characteristics (e.g., age at study, cancer

diagnosis, time since diagnosis), and, if applicable, informa-

tion on comparison groups were extracted into a predeﬁned

data extraction sheet. We extracted detailed information on

insurance, legal, and ﬁnancial hardships and risk factors.

Quality assessment

To assess the methodological quality of the included pub-

lications, we used the Quality Assessment with Diverse

Studies (QuADS) tool [23]. The tool is suitable for qualita-

tive, quantitative, and mixed-methods study designs and has

shown substantial reliability and validity [23]. The QuADS

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Journal of Cancer Survivorship

tool includes 13 evaluation criteria on a scale from 0 (no

mention at all) to 3 (detailed information). Two reviewers

each (MO, PH, SK, KR) independently rated all included

publications, and a percentage of the maximum score was

calculated for each publication.

Data synthesis

To account for the inclusion of both quantitative and qualita-

tive studies in this review, we chose to use narrative synthe-

sis to analyze and report the ﬁndings [24].

Results

Publication selection

We identiﬁed 3096 records in the four searched databases:

PubMed (n = 1843), CINAHL (n = 653), Scopus (n = 375),

and PsycINFO (n = 225). After duplicate removal (n = 914),

2182 records were included in the title and abstract screen-

ing. Thereof, 322 full texts were obtained and screened.

Finally, N = 58 publications were included in this review

focusing on CACS. The PRISMA flow chart displays

the detailed procedure for selecting eligible publications

(Fig.1).

Publication characteristics

Most of the publications were quantitative studies (n = 48),

fewer qualitative (n = 6), and mixed methods (n = 4). Pub-

lications originated in a total of 14 countries. All but three

publications originated from countries with a high sociode-

mographic index (two high-middle, one middle-income)

[25]. Most publications were from the US (n = 31) and

Northern or Western European countries (n = 19), wit h

fewer from Asia (n = 4), the middle east (n = 2), and Canada

(n = 2). Publication years ranged from 2000 to 2024, with

more than two-thirds published in the last decade (n = 39)

and nearly 40% published since 2020 (n = 23). An overview

of included publications is provided in Table1.

Methodological quality ofthepublications

The overall quality of the included publications was

84%, ranging from 72 to 100%. The inter-rater reliability

Fig. 1 PRISMA ﬂow diagram.

aCombined search for survivors

and parents. The hardships

experienced by parents are dis-

cussed in another publication

Records identified from:

PubMed (n=1843)

CINAHL (n=653)

Scopus (n=375)

PsycINFO (n=225)

Records removed before

screening:

Duplicate records removed

(n=914)

Records screened

(n=2182)

Records excluded

(n=1856)

Reports sought for retrieval

(n=326)

Reports not retrieved

(n=5)

Reports assessed for eligibility

(n=322)

Reports excluded:

Wrong publication type

(n=32)

Wrong language (n=0)

Wrong population (n=128)

Thereof parents (n=24)

Wrong outcome (n=104)

Publications included in review

(n=58)

Identification of publications via databases

Identification

Screening

Included

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Journal of Cancer Survivorship

Table 1 Overview of included publications

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Al-Rawashdeh etal.,

2024 [27]

Jordan Quantitative and

qualitative

N = 297 Female (41%)

Male (59%)

≤ 5years: 60 (20%)

6–11years: 74

(25%)

≥ 12years: 163

(55%)

≤ 5years: 41 (14%)

6–10years: 110 (37%)

> 10years: 146 (49%)

22.4 (3.5/NR) No Financial • Financial needs

• Socioeconomic challenges

• Needs regarding money to

cover living expenses, to treat

other illnesses and to treat

side eﬀects of cancer and its

treatments

Baecklund etal.,

2022 [28]

Sweden Quantitative N = 1305 Female (48%)

Male (52%)

0–4years: 432

(33%)

5–9years: 313

(24%)

10–14years: 350

(27%)

15–17years: 210

(16%)

NR NR (NR/20–25) Yes (matched

controls)

Financial

Insurance

• Higher proportions of dis-

ability pension

• SADP more common

Baedke etal.,

2021[29]

USA Quantitative N = 3964 Female (48%)

Male (52%)

NR 5–9years: 139 (3%)

10–19years: 1237 (31%)

20–29years: 1336 (34%)

30–39years:

910 (23%)

40–49years:

316 (8%)

≥ 50years: 26 (1%)

< 20years: 165 (4%)

20–29years:

1427 (36%)

30–39years:

1302 (33%)

40–49years: 797 (20%)

≥ 50years:

273 (7%)

Yes (ethnic sub-

groups within)

Financial

Insurance

• Forgoing needed medical care

(due to ﬁnances)

• Losing insurance

Bejarano-Quisoboni

etal., 2022[30]

France Quantitative N = 5319 Female (45%)

Male (55%)

0–1years: 937

(18%)

2–4years:

1034 (19%)

5–9years: 1088

(21%)

10–14years: 1130

(21%)

≥ 15years: 1130

(21%)

NR < 20years:

550 (10%)

20–30years:

1979 (37%)

31–40years: 1978 (36%)

41–50years: 753 (14%)

≥ 51years:

159 (3%)

No Financial • High health care expenditures

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Bejarano-Quisoboni

etal., 2024 [31]

France Quantitative N = 5353 Female (46%)

Male (54%)

0–1years: 1277

(24%)

2–4years: 1253

(23%)

5–9years: 1183

(22%)

10–14years: 1084

(20%)

≥ 15years: 556

(11%)

24.7 (NR/17–31) < 20years: 818 (15%)

20–30years: 1814 (34%)

31–40years: 1699 (32%)

≥ 41years: 1022 (19%)

Yes (general popu-

lation)

Financial • High excess health care

expenditures

Boman etal.,

2010[32]

Sweden Quantitative N = 1716 Female (49%)

Male (51%)

NR NR 31.6 (NR/NR) Yes (general popu-

lation)

Financial • Economic compensation due

to disability

• Lower net income

Buchbinder etal.,

2023[33]

USA and Canada Quantitative N = 2844 Female (52%)

Male (48%)

NR NR (NR/17.7–48.7) 18–30years: 444 (16%)

30–39years:

1056 (37%)

> 40years: 1344 (47%)

Yes (siblings) Financial • Financial hardship

• Material, behavioral, and psy-

chological ﬁnancial hardship

Carlson–Green,

2009[6]

USA Qualitative N = 11 NR ≥ 5years of survi-

vorship

NR 28.4 (NR/23–33) No Financial

Insurance

• Insurance concerns: denials

because of preexisting condi-

tions, expense of having to

pay more for their insurance

premium or having enormous

deductibles

• Insurance expenses preventing

CCS from, e.g., saving for

down payments or putting

away money for retirement

Chae etal., 2020[34] South Korea Quantitative N = 7317 Female (46%)

Male (54%)

0–4years: 2220

(30%)

5–9years: 1545

(21%)

10–14years: 2048

(28%)

15–17years: 1504

(21%)

NR NR No Financial • Medical costs

Chan etal., 2020[35] China Quantitative N = 614 Female (59%)

Male (41%)

NR 14.1 (6.8/NR) 21.9 (5.6/NR) Yes (siblings) Insurance • Insurance coverage

Clemens etal.,

2017[7]

The Netherlands Quantitative N = 658 Female (44%)

Male (56%)

Median 6.2

(NR/0.01–17.8)

Median 15.6 (NR/3.2–

43.7)

Median 23.5 (NR/14.6–52.3) Yes (platinum with

non-platinum

treatment)

Insurance • Problems obtaining insurance

• Higher insurance premiums

Crom etal.,

2007[36]

USA Quantitative N = 1437 Female (50%)

Male

(50%)

Median 6.7

(NR/0.1–21.1)

Median 21.1 (NR/10–

39.2)

Median 29.7 (NR/18.2–55.3) Yes (general popu-

lation)

Insurance • Denial of insurance

• Diﬃculty/delay in obtaining

medical care

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Dumas etal.,

2017[14]

France Quantitative N = 1920 Female (47%)

Male (53%)

0–4years: 1041

(54%)

5–9years: 446

(23%)

10–14years: 366

(19%)

≥ 15years: 67 (4%)

31.2 (7.1/NR) 36.3 (8.0/NR) No Financial

Insurance

Legal

• Diﬃculties when trying to

access loans

• Diﬃculties in accessing

insurance for a home loan

(including rejection, higher

premiums, and exclusions)

• Diﬃculties in accessing a

personal loan

• Refusal to insure survivors

because of their history of

pediatric cancer

Fair etal., 2021[11] USA and Canada Quantitative N = 698 Female (55%)

Male (45%)

0–5years: 404

(46%)

6–10years: 104

(19%)

11–15years: 109

(20%)

16–20years: 81

(15%)

Median 28.8 (NR/23.1–

41.7)

22–29years:

214 (11%)

30–39years:

228 (42%)

≥ 40years:

256 (47%)

Yes (siblings) Financial • Medical ﬁnancial hardship

• Material ﬁnancial hardship

including conditions that arise

from medical expenses

• Behavioral ﬁnancial hardship

including coping behaviors to

manage medical expenses

• Psychological ﬁnancial hard-

ship resulting from worries

about medical expenses and

insurance

Fauer etal.,

2024[37]

USA Quantitative N = 3475 Female (52%)

Male (48%)

Median 8 (NR/4–13) NR Median 39.1 (NR/33.4–46.6) Yes (siblings) Financial • Financial hardship

Fiala, 2021[38]USA Quantitative 633 Female (71%)

Male (29%)

NR NR (NR/0–61) NR (NR/21–63) Yes (pre vs. post

ACA)

matched with

non-cancer

controls (= peers

without cancer)

Financial

Insurance

• Diﬃculty with health care

aﬀordability

• More medical non-adherence

due to costs than their peers

• Foregoing needed health care

Gunnes etal.,

2016[39]

Norway Quantitative N = 2139 Female (56%)

Male (44%)

NR NR NR Yes (general

population)

Financial • Financial dependence

• Elevated risk of receiving

governmental ﬁnancial

assistance

Guy etal., 2016[40]USA Quantitative N = 239 Female (57%)

Male (43%)

NR ≥ 20years: (72%) 18–34years: 92 (42%)

35–50years: 72 (33%)

51–64years: 32 (12%)

≥ 65years: 43 (13%)

Yes (general

population)

Financial

Insurance

• Productivity loss

• Household productivity loss

• Insurance coverage

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Hendriks etal.,

2021[3]

Switzerland Qualitative N = 28 Female (68%)

Male (32%)

9.3 (NR/0.5–16) Time since end of treat-

ment: 19.1 (NR/2–38)

31.4 (NR/18–55) No Insurance

Legal

• Concerns about many diﬀerent

facets of insurance

• Diﬃculties with reimburse-

ments

• Challenges with DI process

• Diﬃculties with supplemen-

tary health insurance or life

insurance

• Limited eligibility/ﬂexibility for

supplementary insurance

• Perception towards discrimina-

tion and unfairness

Hendriks etal.,

2022[41]

Switzerland Mixed methods N = 69 Female (68%)

Male (32%)

0–5years: 18 (26%)

6–11years: 24

(35%)

12–17years:

27 (39%)

Time since end of

treatment: < 5years:

8 (12%)

6–15years: 22 (33%)

16–25years: 22 (33%)

> 25years: 14 (22%)

Survey: < 25years: 28 (41%)

26–30years: 12 (17%)

31–35years: 13 (19%)

> 35years: 16 (23%)

No Insurance

Legal

• Limited eligibility for sup-

plementary insurance

• Late eﬀects went unacknowl-

edged

Holmqvist etal.,

2010[42]

Sweden Quantitative N = 167 Female (52%)

Male (48%)

6 (4.3/NR) < 5years: 77 (46%)

5–9years: 59 (35%)

10–17years: 31 (19%)

16–24years:

60 (36%)

25–29years: 43 (26%)

30–34years:

38 (23%)

≥ 35years: 26 (15%)

Yes (general popu-

lation)

Financial • Lower income

• Sickness and/or disability

compensation

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Howard etal.,

2014[43]

Canada Quantitative and

qualitative

N = 46 Female (56%)

Male (44%)

8.5 (4.7/2.0–16.5) NR 27 (7.4/16.0–46.0) No Financial

Insurance

Legal

• Not earning enough to cover

living expenses

• Parents continue to pay to

prevent child from living in

poverty

• Diﬃculty to obtain disability

allowance and loss of allow-

ance

• Restrictions to supplement

disability allowance

• Worries about what happens

if or when they (parents) can

no longer provide necessary

ﬁnancial support

• Diﬃculties covering medical

costs of their child

• Struggling to pay for additional

expenses like eyeglasses,

hearing aids, dental work,

vitamins, and prescription

medications

• Health coverage depending on

certain conditions like living

at home

• Costs preventing parents from

retiring

• Diﬃculties obtaining diﬀerent

types of insurance

• Employment discrimination

(unfair barriers to, or denial

of, assistance to accommodate

special needs)

• Theft, assault or fraud

• Being denied public services:

being denied public services,

denied a divorce

• Denied access to personal

records or information

• Unfairly accused of crimes

by police, and threatened or

coerced

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Huang etal.,

2019[9]

USA Quantitative N = 2811 Female (48%)

Male (52%)

8.3 (5.6/1–24.8) 23.6 (8.1/10–48) 31.8 (8.4/18.3–64.5) No Financial

Insurance

• Material hardship

• Psychological hardship

• Coping/behavioral hardship

Ingrand etal.,

2022[44]

France Mixed methods N = 270 Female (49%)

Male (51%)

NR NR NR (NR/18–32) No Legal • Not talking about disease as

grounds for dismissal

• Discrimination at job

Johannesen etal.,

2007[45]

Norway Quantitative N = 2944 NR NR NR NR No Insurance

Financial

• Health insurance beneﬁts

• Lower income

Kim etal., 2018[46] South Korea Qualitative N = 15 Female (27%)

Male (73%)

NR Time since last treat-

ment: 10.7 (NR/6–19)

20.7 (NR/15–28) No Legal • Economic troubles

• Social diﬃculties due to

prejudice or discriminatory

treatment

• Feeling guilty because of

familial economic diﬃculties

• Social prejudice towards

cancer patients

• Discrimination when searching

part-time job

• Exemption from compulsory

military service

Kirchhoﬀ etal.,

2010[47]

USA Quantitative N = 6339 Female (45%)

Male (55%)

≤ 4years: 1703

(27%)

≥ 4years: 4636

(73%)

≤ 20years:

1428 (22%)

21–30years:

3979 (63%)

> 30

932 (15%)

25–34years:

3584 (56%)

35–44years:

2196 (35%)

≥ 45years:

559 (9%)

Yes (siblings) • Health insurance coverage

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Kirchhoﬀ etal.,

2013[48]

USA Qualitative N = 32 Female (50%)

Male (50%)

NR NR NR (NR/25–46) No Financial

Insurance

Legal

• Inability to aﬀord insurance

without employer contribution

• Not having insurance due to

losing ESI upon becoming

unemployed

• Not having insurance due to

not ﬁnding a job that oﬀers

insurance

• Losing eligibility for parents’

ESI

• Health insurance denial due to

cancer history

• Coverage only through spouses

• Limitations in occupational

choices because of insurance

• Limited job mobility for

survivors and spouses

• Worries about losing ESI

• Financial issues with aﬀording

health care

• Financial barriers in their abil-

ity to pay for health care

• Out-of-pocket costs

• Inability to aﬀord individual

health insurance or secure

employment that oﬀered it

• Insurance barriers

Kirchhoﬀ etal.,

2015[49]

USA Quantitative N = 698 Female (55%)

Male (45%)

0–4years: 365

(52%)

5–10years: 143

(20%)

11–15years: 109

(16%)

16–20years: 81

(12%)

NR 22–29years: 214 (30.7%)

30–39years: 228 (32.7%)

40–62years: 256 (36.7%)

Yes (siblings) Insurance • Receiving SSI beneﬁts more

common than in general

population

• Receiving DI beneﬁts more

common

Kirchhoﬀ etal.,

2018[50]

USA and Canada Quantitative N = 394 Female (46%)

Male (54%)

0–5years:

228 (47%)

6–10years:

62 (20%)

11–15years:

61 (19%)

16–20years: 43

(14%)

NR 22–29years:

114 (11%)

30–39years:

137 (44%)

40–62years:

143 (45%)

Yes (siblings) Financial

Insurance

• Job lock

• Problems paying medical bills

• Health insurance denial

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Kirchhoﬀ etal.,

2024[51]

USA Quantitative N = 11535 Female (51%)

Male (49%)

0–4years: 4555

(40%) 5–9years:

2534 (22%)

10–14years: 2435

(21%)

≥ 15years: 2011

(17%)

NR 18–25years: 881 (7%)

26–29years: 1565 (14%)

30–34years: 2151 (19%)

35–39years: 2539 (22%)

40–44years: 2045 (18%)

45–49years: 1375 (12%)

≥ 50years: 979 (8%)

Yes (siblings) Insurance • Insurance coverage

• Insurance instability

• Underinsurance

Kuhlthau etal.,

2016[52]

USA Quantitative N = 443 Female (69%)

Male (31%)

NR NR 38.3 (NR/NR) Yes (general popu-

lation)

Financial

Insurance

• Problems with care accessibil-

ity and aﬀordability (even

when insured)

• Problems with aﬀording

prescription medications,

mental health services, dental

care, eyeglasses, care from a

specialist, and follow-up care

in the previous 12months

• Delaying needed medical care

• Problems aﬀording care

• Problems paying medical bills

• Higher rates of worrying about

medical bills

• More often government-

sponsored insurance

Leung etal.,

2000[53]

USA Quantitative N = 77 Female (58%)

Male (42%)

NR (NR/0.2–20.1) Median length of follow-

up since diagnosis:

16.7 (NR/10.1–23.5)

NR (NR/11.3–38.4) No Insurance • Being uninsured

Löf etal., 2011[54] Sweden Quantitative N = 51 Female (43%)

Male (57%)

NR Time since SCT:

19–24years: 12

(4.9/5–22)

25–42years: 20

(4.7/10–28)

19–24years: 21 (1.6/19–24)

25–42years: 30 (4.8/23–42)

Yes (general popu-

lation)

Financial • Income in poverty risk zone

• Diﬃculty covering day-to-day

expenses

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Lönnerblad etal.,

2023[55]

Sweden Quantitative N = 452 Female (48%)

Male (52%)

0–5years: 163

(36%)

6–9years: 111

(25%)

10–14years: 178

(39%)

NR NR Yes (general popu-

lation)

Financial

Insurance

• Receiving sickness or activity

compensation

Maas etal., 2023[56] The Netherlands Quantitative N = 1713 Female (49%)

Male (51%)

6.8 (4.7/0.0–18) 29.2 (8.5/15.3–55.0) 36.0 (9.3/18.3–70.9) Yes (non-partici-

pants)

Financial • Financial problems

Miser etal.,

2023[57]

Taiwan Quantitative N = 33105 Female (45%)

Male (55%)

NR Years of follow-

up: Median 7.23

(NR/3.58–10.01)

Age at entry: Median 12

(NR/7–16)

Yes (healthy

matched con-

trols)

Financial • Higher medical expenses

• Higher annual outpatient

expense

Mobley etal.,

2022[5]

USA Quantitative N = 1106 Female (46%)

Male (54%)

NR NR 18–26years: 635 (58%)

27–39years: 471 (42%)

No Insurance • Insurance coverage change

• Lost insurance coverage

Mody etal.,

2008[58]

USA Quantitative N = 4151 Female (47%)

Male

(53%)

Median 4 (NR/0–21) 21.1 (NR/5–35) Median 26 Yes (siblings) Insurance • Lower health insurance

coverage

Mulrooney etal.,

2008[59]

USA Quantitative N = 272 Female (54%)

Male (46%)

7 (NR/0–20) 21.4 (NR/5–33) 28 (NR/10–49) Yes (siblings) Insurance • Insurance coverage

Nagarajan etal.,

2003[60]

USA Quantitative N = 694 Female (49%)

Male (51%)

13.5 (NR/3–20) 15.8 (NR/6–28) 29.8 (NR/18–45) Yes (siblings) Insurance • Health insurance coverage

• Diﬃculty obtaining health

insurance

• Health insurance problems

Nathan etal.,

2023[61]

USA Quantitative N = 3555 Female (52%)

Male (48%)

Median 8.5

(NR/3.8–13.8)

NR Median 40.5 (NR/35.0–47.5) Yes (siblings) Financial • Material hardship

• Psychological hardship

• Coping/behavioral hardship

• More likely to report being

sent to debt collection

• Problems paying medical bills

• Foregoing needed medical care

• Worry/stress about paying rent

or mortgage or having enough

money to buy nutritious meals

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Nipp etal., 2017[13]USA Quantitative N = 580 Female (53%)

Male (47%)

NR 30.2 (4.6/NR) 22–29years: 177 (11%)

30–39years:

184 (41%)

40–62years:

219 (48%)

Yes (siblings) Financial • Higher out-of-pocket medical

costs

• Problems paying medical bills

• Deferring care, skipping a test,

treatment, or follow-up

• Worrying about aﬀording

health insurance

• Taking a smaller dose of medi-

cation than prescribed

• Thoughts of ﬁling for

bankruptcy

Nwachukwu etal.,

2015[62]

USA Quantitative N = 121 Female (53%)

Male (47%)

11.2 (NR/0.9–19.6) 11 (NR/2.5–41.4) 33.5 (NR/18–60) Yes (reference

sample of other

study)

Financial • Financial burden

Olson etal., 2011[8] Canada Quantitative N = 111 Female (51%)

Male (49%)

Median 7 (NR/3–11) Median 25 (NR/19–28) Median 31 (NR/26–36) No Legal • Legal diﬃculties

• Diﬃculty ﬁnding employment

• Discrimination at work

• Unfair termination of employ-

ment

• Legal diﬃculties at school

• Diﬃculty acquiring life, health

or disability insurance

Otth etal., 2022[63] Switzerland Quantitative N = 2154 Female (48%)

Male (52%)

Median 10

(NR/4.5–14.3)

Median 16.1 (NR/10.6–

21.9)

Median 24.6 (NR/20.1–31.4) Yes (CNS

tumorswith

other malig-

nancies)

Financial • Receiving disability pension

Ottaviani etal.,

2013[64]

USA Quantitative N = 38 Female (63%)

Male (37%)

13.2 (SE 0.7/3–19) 24.3 (SE 0.7/20–39) 37.9 (SE 1.1/22–52) Yes(siblings) Financial

Insurance

• Financial dependence

• Health insurance coverage

Park etal., 2005[65]USA Quantitative N = 12358 Female (47%)

Male (53%)

0–4years: 5036

(41%)

5–9years: 2730

(22%)

10–14years: 2481

(20%)

15–20years: 2111

(17%)

5–9years: 1285 (10%)

10–14years:

4658 (38%)

15–19years:

3641 (29%)

≥ 20years: 2774 (22%)

< 18years:

3230 (26%)

18–21years:

2114 (17%)

22–24years:

1600 (13%)

25–34years: 4225 (34%)

≥ 35years:

1189 (10%)

Yes (siblings) Insurance • Health insurance coverage

• Diﬃculties obtaining health

insurance coverage

• Being uninsured

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Park etal., 2012[66]USA Qualitative N = 39 Female (49%)

Male (51%)

0–4years: 24 (62%)

5–20years: 15

(38%)

NR ≤ 30years: 21 (54%)

≥ 30years: 18 (46%)

No Insurance

Financial

• High out-of-pocket costs

• Diﬃculty obtaining insurance

• Minimizing need for care/

avoiding care

• Worries about future health

care costs

Perez etal., 2018[4]USA Quantitative N = 698 Female (55%)

Male (45%)

0–5years:

404 (46%)

6–10years:

104 (19%)

11–15years:

109 (20%)

16–20years:

81 (15%)

Median 30.8 Median 39.4 Yes (siblings) Financial Insur-

ance

• Lower household income

• Delaying mental health

services due to cost

• Mental health coverage

• Gaps in insurance knowledge

• Issues of underinsurance and

health insurance literacy

• Deferring needed care

• Being uninsured

• Being ﬁnancially encumbered

• Experiencing ﬁnancial barriers

to mental health care

• Concerns aﬀording mental

health services

• Economic barriers to care

Pickering etal.,

2022[67]

Denmark Quantitative N = 2283 Female (48%)

Male (52%)

9 (6/NR) NR 20 or 30 (depending on

group)

Yes (matched

comparisons;

malignant with

benign tumors)

Financial • Receiving disability pension

• Lower income (also with

social beneﬁts)

• Receiving social beneﬁts

• Higher health care costs

• Higher psychiatric health

care costs

• Higher home care costs

Puhr etal., 2019[68]Norway Quantitative N = 114 Female (58%)

Male (42%)

9.4 (4.43/0.5–17) Since treatment

completion: 13.9

(5.61/2.6–25.1)

23.4 (3.5/NR) Yes (healthy

matched con-

trols)

Financial

Insurance

• More likely to previously and/

or currently receive substan-

tial government beneﬁts

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Journal of Cancer Survivorship

Table 1 (continued)

Authors, year [REF] Country Study design Number

of survivors

Sex/gender distribu-

tion

Mean age at diag-

nosis in years (SD/

range)

Mean time since diagno-

sis in years (SD/range)

Mean age at study in years

(SD/range)

Comparison group Hardship domains Reported hardships

Pui etal., 2003[69]USA Quantitative N = 584 Female (53%)

Male (47%)

NR Median 20 (NR/10–37) Median 27 (NR/18–50) Yes (general popu-

lation)

Insurance • Lack of health insurance

• Denial of health insurance due

to leukemia

• Prohibitive premiums due to

leukemia

• Restrictions on health care

plans due to leukemia

• Diﬃculty obtaining health care

• Not receiving needed care

Scholtes etal.,

2019[70]

Germany Quantitative N = 270 Female (45%)

Male (55%)

NR (NR/0.17–

14.92)

NR (NR/11.92-34.08) NR (NR/25.5–46.67) Yes (general popu-

lation)

Financial • Financial diﬃculties

Warner etal.,

2014[71]

USA Qualitative N = 17 Female (47%)

Male (53%)

Median 15.5

(NR/2–20)

Median 32 (NR/11–36) Median 45.5

(NR/27–56)

No Financial

Insurance

• Financial and insurance

concerns

• Financial diﬃculties with

emergency care

• Financial burden

Waters etal.,

2024[72]

USA Quantitative N = 3503 Female (51%)

Male (49%)

0–4years: 1327

(41%)

5–9years:

785 (23%)

10–14years:

805 (21%)

≥ 15years: 586

(15%)

NR 18–25years: 236 (9%)

26–29years: 316 (12%)

30–34years: 543 (18%)

35–39years: 721 (19%)

40–44years:

615 (16%)

45–49years:

503 (12%)

≥ 50years:

569 (14%)

Yes (siblings) Insurance • Job lock

Yağci-Küpeli etal.,

2013[73]

Turkey Quantitative N = 201 Female (37%)

Male (63%)

Median 10

(NR/1–19)

Median 13.5 (NR/3–31) Median 23 (NR/18–39) Yes (general popu-

lation)

Insurance • Insurance status

Zebrack etal.,

2010[74]

USA Quantitative N = 519 Female (52%)

Male

(48%)

11.3 (6.1/0–21) 15.4 (6.9/2–37) 26.7 (5.3/18–39) No Financial • Financial problems

Where stratiﬁed age values were given, a value was calculated for the whole population

ACA Aﬀordable Care Act, CCS childhood cancer survivors, CNS central nervous system, DI disability insurance, ESI employer-sponsored insurance, IQR interquartile range, NHL non-Hodgkin

lymphoma, NR not reported, RT radiotherapy, SADP sickness absence and disability pension, SCT stem cell transplantation, SE standard error, SSI social security income

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Journal of Cancer Survivorship

ranged from 0.73 to 1.00 for the diﬀerent criteria, with a

mean of 0.86 (standard deviation 0.08). With a weighted

Kappa = 0.86, the interrater reliability showed almost perfect

agreement [26] (Supplemental appendix C).

Reported insurance, legal, andﬁnancial hardships

CACS reported many diﬀerent socio-bureaucratic hard-

ships. In Fig.2, we give an overview of insurance, legal,

and ﬁnancial hardships of CACS as covered in the included

publications.

Health insurance coverage

Among publications included, several explicitly reported

the percentage of CACS with health insurance. Percentages

were reported mainly in publications from the US with elec-

tive health insurance. Reported health insurance coverage

rates for adult CACS in the US ranged between 80 and 90%

[5, 40, 53, 60, 64, 65, 69]. Nonetheless, compared to sib-

lings, survivors were more likely to report underinsurance

and less likely to perceive their coverage as stable [51]. In

one US publication, almost half of insured survivors ful-

ﬁlled the criteria of being underinsured [66]. Some publi-

cations found that CACS had signiﬁcantly lower insurance

rates compared to siblings [35, 37, 51, 58, 65], while others

reported the opposite [59] or no diﬀerence [4, 64]. Diﬀer-

ences in coverage varied across diagnoses [58], age groups

[65], and ethnicity groups [29].

In several US publications [47, 48, 65, 69, 72] and

one Canadian publication [43], some CACSs were able

to receive (extended) health insurance through their own,

spouses’, or parents’ employment [43, 47, 48, 65, 69, 72]. In

one publication, health insurance was provided through an

employer, spouse, or parent for almost 60% of participating

CACS [69]. In another US publication, 56% of CACSs were

covered through employment and 27% through a spouse or

parent [65]. However, this coverage was often tied to certain

conditions, such as receiving coverage only up to a certain

age, requiring the survivor to live with their parents or be

enrolled in post-secondary education, and depending on

whether the parent [43] or spouse [48] continued to work.

Being dependent on employer-sponsored healthinsurance

led to “job lock” (i.e., self-reported inability of employee to

leave a job freely due to limited portability of health insur-

ance [50]) for some CACS and their spouses [48, 50, 72].

This phenomenon was reported only in US publications,

occurring in almost a quarter of the CACS study partici-

pants and more frequently than in their siblings [50, 72].

CACSs reported being unable to aﬀord insurance on their

own, leading them to stay in jobs or limit their job search

to positions oﬀering insurance coverage [48]. This also

aﬀected spouses’ and parents’ occupational choices [43,

48, 72]. Other survivors were enrolled in federal or state-

supported health plans (15.1% [69], 30.3% [52]), Medicaid

(i.e., a government program in the US that helps cover medi-

cal costs for people with limited income and resources), or

public assistance (12% [65]). To have government-sponsored

insurance, Medicare (i.e., a federal health insurance program

in the US for people age 65 and older and people with dis-

abilities), Medicaid and public assistance was more likely

among CACS compared to siblings [13, 51, 65] or compari-

sons [52].

From other countries, only a few publications have

reported percentages of health insurance coverage of CACS.

A Turkish publication has reported that the public social

insurance rate, the most common method of obtaining health

insurance coverage in Turkey, was 90.5% for CACSs [73].

In comparison to the general Turkish population, CACSs’

insurance rates were higher [73]. The lowest reported per-

centage for health insurance, with only 23.4% of CACS

being insured, was reported in a publication from China

[35]. CACSs were signiﬁcantly less likely to be insured

compared to their siblings [35].

Publications from European countries did not report per-

centages of health insurance coverage for CACS, presuma-

bly because of compulsory health insurance where everyone

must be covered by some form of basic health insurance.

Diﬃculties obtaining andmaintaining insurance

Even though most CACS reported being covered through

compulsory or individual/employer-based health insurance,

insurance-related diﬃculties were reported around the globe,

also in European publications [3, 7, 14, 41]. In several coun-

tries, around 30% experienced diﬃculties in obtaining insur-

ance [3, 8, 43, 60, 65, 66] and reported that they had been

denied health insurance coverage in the past because of their

illness history [66]. Some reported facing denials [6, 14, 48,

66, 69], exclusions, and restrictions [27, 41, 65, 69], such

as ineligibility for supplementary health insurance [3, 41]

or higher premiums and deductibles [6, 7, 65, 69]. Experi-

encing these kinds of diﬃculties was more likely for CACS

than siblings [65].

Some publications reported on CACSs’ health insurance

coverage changes, i.e., losing or gaining coverage [5, 29,

48]. Loss of health insurance was reported, for example,

by US CACSs who became unemployed and therefore lost

employer-sponsored insurance, or by younger CACSs who

lost their parents’ insurance as they transitioned into adult-

hood [48]. CACSs who had supplementary health insurance

before their cancer diagnosis were often no longer able to

make changes to their insurance policy [3]. In one Swiss

publication, almost half of the participating CACSs (45%)

felt that their illness had negatively aﬀected their lives with

respect to insurance matters [41]. Nevertheless, the majority

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Journal of Cancer Survivorship

Fig. 2 Insurance, legal, and ﬁnancial hardships—an overview

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Journal of Cancer Survivorship

of respondents expressed satisfaction with the coverage

provided by their basic health insurance [3, 66], except for

administrative barriers [66], such as the inconvenience of

obtaining reimbursement [3], and high costs (i.e., deducti-

bles, copays, and premiums) [66].

Diﬃculties were also reported for other types of insur-

ance [8, 43]. A French publication found that CACSs expe-

rienced challenges with insurance for personal loans and

home loans, including rejections, exclusions, and higher pre-

miums [14]. In this publication, 10.4% of CACS experienced

diﬃculties obtaining a small loan and 30.1% of participants

with obtaining a home loan [14]. Diﬃculties also occurred

with disability, risk, and life insurance, as these options did

not make ﬁnancial sense, premiums were higher, and/or can-

cer was excluded from coverage [3, 7, 8]. A Dutch study

reported problems obtaining funeral insurance [7]. Reasons

for these diﬃculties were provided by diﬀerent publications,

including CACSs’ cancer history [7, 14, 41, 48, 69], preex-

isting conditions [6], or late eﬀects [41]. CACSs also had

lower proportions (21.3% vs. 50%) of life insurance coverage

compared to their siblings [35].

Healthcare aﬀordability andaccessibility

CACSs faced large ﬁnancial barriers in paying for health

care [48]. Many CACSs reported having problems paying

medical bills [13, 33, 52, 61], having limited means to cover

substantial medical costs [43], and diﬃculties aﬀording care

[27, 48, 52]. Even when insured, CACS experienced prob-

lems with care aﬀordability, including challenges in paying

for prescription medications, dental care, eyeglasses, mental

health services, and specialist and follow-up care [33, 52]. A

majority of CACS paid for medical expenses out of pocket,

causing hardship for both, them and their families [43, 48,

66]. CACS faced higher out-of-pocket costs than siblings

[13] and reported higher health care, psychiatric care, and

home care costs than matched comparisons [67]. Further-

more, CACS mentioned having to pay more or extra charges

for their insurance premiums [6, 7, 65] or having enormous

deductibles [6].

Several US publications reported that CACSs forgo

necessary care [29, 52, 61, 66], do not adhere to, or delay

recommended medical care [4, 11, 13, 38, 52] due to ﬁnan-

cial reasons, even when insured [38, 48, 52]. This included

skipping tests, treatments, or follow-ups, or taking smaller

doses of medication than prescribed [13, 52]. In one pub-

lication, more than one-third of CACS reported not see-

ing a doctor or going to the hospital when needed due to

ﬁnancial constraints [9]. In another publication, more than

half of CACS reported experiencing at least one of the

behavioral hardships mentioned above due to cost, which

is more frequent than their peers [11]. One publication

found no signiﬁcant diﬀerences in mental health access,

in terms of insurance coverage or cost-related delay of

care, between CACSs and their siblings [4]. Some mental

health coverage was reported by around two-thirds of both

CACS and siblings [4].

Financial hardships anddependence onsupport

Financial burden experienced by CACS was reported in sev-

eral of the included publications [9, 11, 27, 33, 39, 46, 61,

62, 70, 74]. CACS reported ﬁnancial problems [56, 74] and

economic troubles [46] and faced increased ﬁnancial burden

and diﬃculties compared to reference populations [33, 62,

70]. CACSs stated that their cancer experience had a signiﬁ-

cant negative impact on their ﬁnancial situation, resulting in

substantial material hardship [9] for up to 40% of surveyed

CACS [11]. CACSs in a publication from the US were also

more likely to report being sent to debt collection than their

siblings [61].

In a Swedish publication, the income of 63% of participat-

ing CACS fell within the poverty risk zone, and 22% struggled

to cover day-to-day expenses [54]. Half (50%) of a Canadian

CACS cohort did not earn enough to cover most of their living

expenses, as they only earned minimum wage—their parents

supplemented their income to prevent them from living in

poverty and to enable them to have a “reasonable” quality of

life [43]. Similar issues were reported in other countries, with

around 20% of CACS in a US publication reporting reduced

spending on home improvement and basics such as food and

clothing [33] and 55% of CACS in a Jordanian publication

reporting a need for ﬁnancial support to cover living expenses

[27]. Insurance expenses have prevented some CACS from

making progress in other areas of adult life, such as saving

for a house deposit or for retirement [6].

The risk of financial dependency among CACS is

increased [39]. CACSs were more likely to receive govern-

ment beneﬁts and disability pension than comparisons [28,

67, 68]. A Norwegian publication demonstrated that CACSs

were four to ﬁve times more likely to receive ﬁnancial sup-

port from the government than the cancer-free reference

group [39]. Several publications from diﬀerent countries

reported that CACS were enrolled in supplemental secu-

rity income (SSI) [49], disability insurance (DI) [3, 49], or

receiving disability pension (DP) [28, 45, 63, 67], disability

allowance [43], or government beneﬁts due to sickness and/

or disability [28, 32, 39, 42, 55, 67, 68]. In a Swedish pub-

lication, obtaining sickness or activity compensation was

11 times more likely for survivors than comparisons [55].

Even though such beneﬁts can alleviate some ﬁnancial bur-

den for CACS, the maximum beneﬁt payouts are rather low,

sometimes even lower than the federal poverty level [49]. In

a Canadian publication, 82% of participants indicated that

the received disability allowance did not cover their living

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Journal of Cancer Survivorship

expenses [43]. In addition, these allowances come with

restrictions, such as only being allowed to supplement them

with very minimal earnings, making living independently

unaﬀordable [43]. Moreover, CACS described experiencing

diﬃculties when applying for disability pension [3] or allow-

ance [43], with 27% of study participants rating the applica-

tion process as diﬃcult and 30% as very diﬃcult [43]. The

mentioned diﬃculties included understanding and completing

the necessary paperwork, obtaining required assessments, a

lack of understanding from oﬃcials, and convincing oﬃcials

that CACS suﬀered from disability, resulting in stress, con-

fusion, frustration, and the inability to initially obtain a dis-

ability allowance and the loss of allowance for some [3, 43].

Legal hardships anddiscriminatory challenges

Six of the included publications reported on legal hardships.

In addition to diﬃculties with acquiring insurance (see the

previous sections), some CACSs reported that insurance

companies refused to pay their medical, dental, or disability-

related expenses, forcing them to seek legal help [3, 43].

However, ﬁnding and aﬀording legal assistance also proved

to be diﬃcult [3, 8].

Reported legal diﬃculties were common with 40.7% of

CACS being aﬀected in a Canadian publication [8]. Of the

surveyed CACS, 22.2% reported legal diﬃculties at school

[8]. However, the majority of legal issues were occupation-

related, with 58.3% [8] and 45% [43] of Canadian CACS

reporting such problems. These issues included fewer

employment opportunities, diﬃculty ﬁnding employment,

or unfair termination of employment [8, 46]. CACS from

Canada, South Korea and France experienced workplace

discrimination, such as unfair barriers to or denial of assis-

tance for special needs [43, 44, 46], denial of equal men-

toring opportunities [43], being paid minimum wage, and

not being considered for promotion or advancement [43].

Discriminatory treatment after the disclosure of childhood

cancer was also reported in relation to obtaining loans, even

for French CACS with no present health conditions [14].

When trying to obtain small loans (10.4%) or a home loan

(30.1%), CACSs faced diﬃculties such as rejection, exclu-

sion, or higher premiums after disclosing their childhood

cancer [14]. Instances of denial of public services or access

to personal records or information were also reported [43].

Psychological aspects ofinsurance, legal, andﬁnancial

hardships

Many of the included publications also reported on the

psychological aspects of insurance, legal, and financial

hardships [3, 9, 11, 13, 48, 52, 61, 66, 71]. Psychological

ﬁnancial hardship was reported by over half of the CACS in

two North American publications [9, 11]. Other publications

found that CACS experienced worry and stress about pay-

ing rent or mortgage [13, 61], aﬀording (health) insurance

[11, 13] and future health care costs [66], covering medical

bills [52], and having enough money to buy nutritious meals

[61] and household utilities [33], with some even having

thoughts of ﬁling for bankruptcy [13]. Economic diﬃcul-

ties due to childhood cancer also aﬀected CACSs’ families,

causing family problems [46]. Some CACSs reported feeling

guilty because they believed the family issues, such as family

problems or economic diﬃculties, were caused by them and

their illness [46].

Other worries were insurance-related consequences

of CACSs’ illness. In a Swiss publication, concerns

were expressed regarding different types of insurance,

spanning from basic health insurance to DI and private

insurance [3]. CACS described feeling lost and stressed

during the DI application process [3]. Others were wor-

ried about potentially negative attitudes toward being a

DI-recipient [3]. Additional experiences included bul-

lying and harassment in the workplace [43] and social

difficulties due to prejudice or discriminatory treatment

[46]. This reportedly made CACSs fearful and hesitant

to disclose their situation to potential employers [44,

46] while at the same time worrying about the conse-

quences of not disclosing [44]. Concerns about staying

employed were mentioned by approximately half of the

CACS in one US publication [11]; related incessant wor-

ries about losing ESI were reported by CACS in another

US publication [48]. Loss of ESI was a concern because

a reduction in working hours or job loss might lead to a

potential loss of eligibility [48, 66]. CACS also feared

insurance rescission, believing that insurers might cancel

their policy retroactively because of their health status

[48]. Another worry was that coverage of certain treat-

ments or preventive care would be denied due to their

cancer history [3, 48, 66].

Hardship‑related risk factors

Of the included publications, 25 identiﬁed potential risk

factors for insurance, legal, and ﬁnancial hardships. We

provide an overview of the risk factors described (only

statistically signiﬁcant associations), ordered by cancer-

related, treatment-related, demographic, socio-bureau-

cratic, health-related, and mental health-related factors

in Table2. Frequently mentioned risk factors were CNS

tumors, being female, suﬀering from (chronic) health prob-

lems and having low household income, lack of insurance,

and being unemployed.

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Journal of Cancer Survivorship

Table 2 Overview of risk

factors for insurance, legal,

and ﬁnancial hardships after

childhood cancer as described

in included publications

Reported risk factors Hardship

Cancer-related factors

Age at diagnosis

- Younger age at diagnosis Being uninsured [59, 65]

- Older age at diagnosis Higher health care expenditures [30]

Higher annual outpatient expenses [57]

Type of cancer

- Brain and other CNS tumors/malignancies Diﬃculties obtaining needed care [36]

Higher health care and home care costs [67]

Higher health care expenditures [30, 31]

Higher annual outpatient expenses [57]

Legal diﬃculties [8]

- Leukemia/hematologic malignancy Financial hardship [11]

Insurance denial [36]

Being uninsured [59, 65]

- Non-Hodgkin’s lymphoma Being uninsured [59, 65]

Subsequent cancers/tumor recurrence Financial hardship [9, 62]

Treatment-related factors

Chemotherapy Higher medical costs [34]

Financial hardship [61]

Being uninsured [59, 65]

Irradiation/radiotherapy Higher medical costs [34]

Financial hardship [61]

Being uninsured [65]

Legal diﬃculties [8]

Surgery Higher medical costs [34]

Diﬃculties obtaining loans [14]

Demographic factors

Age at study

- Younger age at study Financial hardship [61]

Being uninsured [65]

- Older age at study Higher health care expenditures [30, 31]

Financial hardship [9, 11]

Gender

- Female Higher health care expenditures [30]

Higher annual outpatient expenses [57]

Higher out-of-pocket costs [13]

Financial hardship [61]

Job lock [50]

Lower health insurance coverage (only females

who were irradiated) [58]

- Male Being uninsured [65]

Ethnicity

- Being “black” (only reported in the US) Higher out-of-pocket costs [13]

Forgoing care [29]

Civil status

- Being single Financial hardship [61]

Higher out-of-pocket costs [13]

- Being divorced/separated/widowed Financial hardship [61]

Being uninsured [65]

Socio-bureaucratic factors

Household income

- High Higher medical costs [34]

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Journal of Cancer Survivorship

Discussion

Our systematic review identiﬁed a considerable number

of insurance, legal, and ﬁnancial hardships reported by

CACS and summarized the recently growing body of lit-

erature on these issues. The reported hardships show that

these diﬃculties persist into survivorship. CACS reported

long-term, intertwined hardships, such as higher insurance

premiums and deductibles due to late eﬀects, or insurance

companies refusing to pay for medical expenses, resulting

in problems with the aﬀordability of needed care. The main

problem areas described by CACS included difficulties

with insurance companies, discrimination, and challenges

aﬀording necessary care. Survivors of CNS tumors, female

CACS, and those reporting low household income, unem-

ployment, or lack of insurance seem to be most at risk for

these diﬃculties. Our review indicates that many of the

reported hardships should be considered in the light of their

interdependence.

Legal hardships were related to insurance, reimburse-

ments, access to services, and employment, with workplace

discrimination often reported. Since CACSs are more likely

to be unemployed [75], experiencing unfair barriers or denial

of assistance to meet special needs [43, 44, 46] may further

Table 2 (continued) Reported risk factors Hardship

- Low Delaying and skipping needed care [4, 38]

Diﬃculties aﬀording care [38]

Higher out-of-pocket costs [13]

Financial hardship [9, 33, 74]

Being uninsured [65]

Financial situation

- Financial instability Financial hardship [9]

- High percentage of income spent on out-of-pocket

medical costs Financial hardship [13]

Thoughts of ﬁling for bankruptcy [13]

Delaying and skipping needed care/medication [13]

- Socioeconomic challenges Financial hardship [27]

Educational attainment

- Low Financial hardship [9, 27, 33, 61, 70]

Being uninsured [65]

Unemployment Financial hardship [33, 74]

Diﬃculties obtaining loans [14]

Diﬃculties obtaining needed care [36]

Higher out-of-pocket costs [13]

Insurance denial [36]

Being uninsured (social insurance) [73]

Socioeconomic status

- High Higher medical costs [34]

Insurance status

- No insurance Financial hardship [11, 33, 61]

Higher out-of-pocket costs [13]

Diﬃculties obtaining needed care [36]

Postponing treatment due to cost [4]

Forgoing care [29]

- Public insurance Financial hardship [61]

- Private insurance Higher out-of-pocket costs [13]

- Diﬃculties acquiring insurance Financial hardship [9]

Legal diﬃculties Financial hardship [8]

Health-related factors

(Chronic) Health problems Financial hardship [9, 27, 33, 74]

Diﬃculties obtaining loans [14]

Job lock [50]

Higher out-of-pocket costs [13]

Hospitalization in the past year Higher out-of-pocket costs [13]

Mental health-related factors

Psychological/mental health problems Financial hardship [9]

Postponing treatment due to cost [4]

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Journal of Cancer Survivorship

complicate their entry into the labor market and increase the

risk for unemployment. As unemployment has been reported

as a risk factor for the hardships studied [13, 14, 36, 73,

74], especially for lack of insurance coverage and ﬁnancial

hardship, it is important to note the more diﬃcult access.

Compared to survivors of adult cancer, who have typically

built careers before their cancer diagnosis and can rely on

these careers when re-entering the workforce to regain some

normalcy [76], CACSs may face diﬃculties from the start of

their employment trajectory.

Insurance-related and ﬁnancial hardships were strongly

linked. In line with previous research and reviews [10, 77],

our systematic review showed that CACSs are at an elevated

risk for diﬃculties with aﬀording necessary healthcare and

paying medical bills. Costs, and ultimately medical prob-

lems, increase when treatments are not utilized due to lack

of insurance coverage or high costs [78]. Our review dem-

onstrated that, across diﬀerent publications, obtaining new

insurance or changing existing plans after diagnosis proves

to be diﬃcult for many CACSs. Despite many CACSs expe-

riencing diﬃculties with insurance, most are insured. Publi-

cations reporting CACS being uninsured mainly stem from

the US [58, 65], where health insurance is still mostly linked

to employment [48]. However, the implementation of the

Aﬀordable Care Act (ACA) and the expansion of Medicaid

have helped to reduce certain insurance coverage dispari-

ties in the US [51, 79, 80]. Protecting individuals with pre-

existing conditions, who previously had limited aﬀordable

insurance options outside of employment or public insur-

ance, is an important attainment of the ACA [51]. In other

countries where health insurance is independently or govern-

mentally organized and often compulsory, being uninsured

does not pose a problem of that extent. In the Netherlands for

instance, CACS cannot be refused insurance [56]. Though,

it remains problematic that CACSs are often only eligible

for general or basic insurance, not supplementary or dental

insurance, unless they had comprehensive insurance cover-

age before their diagnosis [3, 41]. These problems not only

aﬀect the CACS population but also people living with other

chronic health conditions [81]. As CACSs have an increased

risk of chronic health conditions [82] and will need to uti-

lize healthcare services more frequently in the long term

[57], they may be even more vulnerable to these diﬃculties.

Insurance coverage aﬀects survivors’ ability to attend impor-

tant follow-up visits [5] and receiving preventive services,

treatment, and survival after a cancer diagnosis [83]. If we

want CACSs to be able to take care of themselves and attend

follow-up visits, care must be ﬁnancially and bureaucrati-

cally manageable.

Furthermore, it is important to consider the possibil-

ity of survivors staying and/or becoming dependent on

their parents or partners with regard to ﬁnancial and insur-

ance matters. The issue of job lock, which can aﬀect both

survivors and parents or spouses, represents a signiﬁcant

challenge in the context of insurance [48, 50, 72]. In future

research, it could be beneﬁcial to investigate whether this

potentially also leads to survivors involuntarily remaining

in cohabitating or marital arrangements. Another problem-

atic observation of this systematic review is the impact of

these socio-bureaucratic hardships on the psychological

well-being of CACS [3, 9, 11, 13, 48, 52, 61, 71]. The

included publications show that this is a substantial issue

[9, 11] that should not be neglected.

Implications forpractice

This review revealed that insurance, legal, and finan-

cial hardships are often investigated as secondary out-

comes and that their measurement is not standardized.

While income, employment, insurance status, and socio-

economic status are often surveyed in routinely applied

questionnaires, long-term socio-bureaucratic hardships

are surveyed to a lesser extent. In accordance with other

researchers [10, 84], we believe that including these fac-

tors in serial assessments is important to better understand

these hardships and their extent over time, identify risk

groups, and determine when support is most needed.

Expanding or creating oﬀers of support and guidance,

or points of contact for socio-bureaucratic matters such as

applying for disability or private insurance, ﬁling insurance

claims, or ﬁnding legal assistance throughout the cancer

trajectory, can alleviate or potentially prevent hardship.

Previous research shows that survivors have unmet needs

in this regard [77, 85] or lack knowledge about laws [66],

while our review shows that hardships often stem from

bureaucratic hurdles, regulations, or complicated systems.

Socio-bureaucratic support and information should be pro-

vided to CACS throughout their entire cancer trajectory

and not just in the early stages of treatment. A variety of

relevant materials for survivors are already available. For

example, Hoﬀman [86] or Monaco and Smith [87] provide

guidance for CACS on legal issues. When presented in a

clear and accessible manner, such materials could serve as

a basis for counseling and informing CACS on their rights,

options, and scope for action.

For system-level interventions, such as reducing drug

costs, altering reimbursement models, or designing value-

based insurance [77, 88], applying collaborative eﬀorts

from research, policy, and practice would be crucial due to

the complexity of the systems and the interdependence of

hardships. An example of legislative initiatives adopted by

several European countries is the recognition of a “Right

to Be Forgotten” [14, 89, 90]. A legal stipulation that

urges EU member states not to allow the use of health data

related to oncological diseases when concluding insurance

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Journal of Cancer Survivorship

policies after a speciﬁed period [14, 89, 90]. Survivors

no longer have to disclose their cancer history to insurers

[14]. Implementing such initiatives is a step towards avoid-

ing CACSs’ risk of discrimination.

Study strengths andlimitations

A major strength of this review is that it synthesizes evidence

from the past > 20years through a systematic and transparent

approach, oﬀering a broad and comprehensive perspective

on insurance, legal, and ﬁnancial hardships. By providing a

holistic view of these three intertwined and mutually inﬂuenc-

ing topics, rather than examining them separately, we have

gained a better understanding of the bigger picture of socio-

bureaucratic hardships. However, there are some limitations to

consider. One potential limitation is that we chose not to con-

duct additional searches of the referenced and grey literature,

which may have resulted in the omission of some additional

eligible publications. However, the number of publications

included suggests that our search was extensive enough to

provide a comprehensive review of the existing evidence. We

recognize that grey literature in particular can be an impor-

tant additional resource in systematic reviews, but the focus

was on the available scientiﬁc evidence from original studies.

Given the diﬀerent health care, legal, and insurance systems,

the included publications were embedded in; generalizability

of the ﬁndings may be limited to each respective system. It is

also noteworthy that some of the included publications were

derived from the same long-term research projects.

Conclusion

The many socio-bureaucratic hardships of CACS high-

lighted in this systematic review underscore the impor-

tance of not underestimating or neglecting long-term

insurance, legal, and ﬁnancial hardships. Our ﬁndings

can serve as a basis for the enhancement and expansion

of supportive care services addressing these diﬃculties

by providing information and resources. With increasing

numbers of survivors, it is crucial to oﬀer tailored, long-

lasting support to CACS with needs in these areas. To

initiate eﬀective interventions, collaborative eﬀorts from

research, policy, and practice are needed.

Supplementary Information The online version contains supplemen-

tary material available at https:// doi. org/ 10. 1007/ s11764- 024- 01710-3.

Author contribution LM, MH, and KR secured funding. MO, LM,

MH, GM, SK and KR contributed to the design of the review. MO

searched the literature, MO, PH, SK and KR double-screened all

the references, MO extracted the data, and PH, SK and KR double-

checked the data extraction. MO, PH, SK and KR assessed the quality

of the included studies. MO wrote the ﬁrst draft of the manuscript and

prepared ﬁgures and tables, to which all authors provided feedback. All

authors read and approved the ﬁnal version of the manuscript.

Funding Open access funding provided by University of Luzern. This

work was supported by the Swiss Cancer Research Foundation (Grant

no. KFS-5384–08-2021) and the Swiss National Science Foundation

(Grant no. 10001C_182129/1).

Data availability No datasets were generated or analysed during the

current study.

Declarations

Competing interests The authors declare no competing interests.

Conflict of interests The authors declare no conﬂict of interests.

Open Access This article is licensed under a Creative Commons Attri-

bution 4.0 International License, which permits use, sharing, adapta-

tion, distribution and reproduction in any medium or format, as long

as you give appropriate credit to the original author(s) and the source,

provide a link to the Creative Commons licence, and indicate if changes

were made. The images or other third party material in this article are

included in the article’s Creative Commons licence, unless indicated

otherwise in a credit line to the material. If material is not included in

the article’s Creative Commons licence and your intended use is not

permitted by statutory regulation or exceeds the permitted use, you will

need to obtain permission directly from the copyright holder. To view a

copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

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Addressing Akrasia in Childhood, Adolescent and Young Adult Cancer Survivors: Implications for Long-Term Follow-Up and Preventive Health Interventions

Article

Apr 2025

Background: Childhood, adolescent, and young adult cancer survivors (CAYACS) face significant long-term health risks, yet adherence to long-term follow-up (LTFU) care remains inconsistent. This study explores the concept of akrasia (i.e., acting against one’s better judgment by engaging in behaviors known to be harmful or counterproductive) to understand the psychological, cognitive, and systemic barriers influencing survivor engagement in LTFU. Method: Using an ethical reflection approach based on a literature review, we discussed survivor experiences, behavioral science insights, and ethical principles to identify solutions that balance patient autonomy with supportive interventions. A narrative approach was used to summarize the key points discussed during the ethics reflection group meetings. Results: Our findings highlight key barriers such as trauma, avoidance behaviors, and cognitive constraints that contribute to non-adherence. Strategies such as shared decision-making, digital health tools, and nudge-based interventions are proposed to enhance survivor engagement. Ethical considerations emphasize the need for personalized and flexible care approaches that respect survivor agency while mitigating obstacles to adherence. Conclusions: Addressing akrasia through ethical and behavioral frameworks could improve LTFU adherence, ultimately enhancing survivorship care and long-term health outcomes.

Mapping the supportive care needs and quality of life of adult survivors of childhood cancer at a comprehensive cancer center in the Middle East

Article

Full-text available

May 2024

Assessing unmet needs is crucial to achieving quality care and patient satisfaction. Between September and December 2021, we assessed unmet supportive care needs in a consecutive sample of adult survivors of childhood cancer at KHCC (King Hussien Cancer Center). Two hundred and ninety-seven adult survivors of childhood cancer completed the study questionnaire. The average needs score across all domains was 24.80 (SD = 19.65), with the financial domain scoring the highest 30.39 (SD = 31.95) and sexuality scoring the lowest 7.67 (SD = 19.67). Using a multivariate linear regression model, female gender was independently associated with significantly high scores in all need domains (p < 0.001), except for sexuality. Monthly income, comorbidities, socioeconomic challenges, time since diagnosis, and age at diagnosis have emerged as predictors of needs in many domains. Mean quality of life (QoL) was significantly and inversely associated with the mean score in multiple domains: psychological (p < 0.001), sexuality (p = 0.038), financial (p < 0.001), and overall needs (p = 0.004). Following a content analysis of qualitative data, educational difficulties, and work-related challenges were identified as other unmet needs. Cancer experiences during childhood significantly influence supportive care needs in adulthood. There is a need for more tailored studies assessing different populations of cancer survivors and avoiding the one-size-fits-all survivorship care.

Excess healthcare expenditure in adults treated for solid cancer in childhood: a cohort study in France

Article

Full-text available

Jun 2023
EUR J HEALTH ECON

Background Due to late effects, childhood cancer survivors (CCS) are more likely to have multiple chronic conditions than the general population. However, little is known about the economic burden of care of CCS in the long term. Objectives To estimate excess healthcare expenditure for long-term CCS in France compared to the general population and to investigate the associated factors. Methods We included 5353 5-year solid CCS diagnosed before the age of 21 years before 2000 from the French CCS cohort and obtained a random reference sample from the general population for each CCS, matched on age, gender and region of residence. We used the French national health data system to estimate annual healthcare expenditure between 2011 and 2018 for CCS and the reference sample, and computed the excess as the net difference between CCS expenditure and the median expenditure of the reference sample. We used repeated-measures linear models to estimate associations between excess healthcare expenditure and CCS characteristics. Results Annual mean (95% CI) excess healthcare expenditure was €3920 (3539; 4301), mainly for hospitalization (39.6%) and pharmacy expenses (17%). Higher excess was significantly associated with having been treated before the 1990s and having survived a central nervous system tumor, whereas lower excess was associated with CCS who had not received treatment with radiotherapy. Conclusions Of the variables that influence excess healthcare expenditure, a lever for action is the type of treatment administered. Future research should focus on addressing the long-term cost-effectiveness of new approaches, especially those related to radiotherapy.

Positive and negative survivor-specific psychosocial consequences of childhood cancer: the DCCSS-LATER 2 psycho-oncology study

Article

Full-text available

May 2023

Purpose Numerous studies investigated generic psychosocial outcomes in survivors of childhood cancer (CCS). The present study aimed to describe survivor-specific psychosocial consequences in CCS, and to identify socio-demographic and medical associated factors. Methods CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963–2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed the Benefit & Burden Scale (BBSC) and the Impact of Cancer–Childhood Cancer (IOC-CS). Items were scored on a 5-point Likert scale (range 1–5). We examined outcomes with descriptive statistics, and socio-demographic and medical associated factors with regression analyses, corrected for multiple testing (p < 0.004). Results CCS, N = 1713, age mean (M) 36 years, 49% female, ≥ 15 years since diagnosis, participated. On average, CCS reported ‘somewhat’ Benefit (M = 2.9), and ‘not at all’ to ‘a little’ Burden (M = 1.5) of childhood cancer. Average scores on IOC-CS’ positive impact scales ranged from 2.5 (Personal Growth) to 4.1 (Socializing), and on the negative impact scales from 1.4 (Financial Problems) to 2.4 (Thinking/Memory). Apart from cognitive problems, CCS reported challenges as worries about relationship status, fertility, and how cancer had affected siblings. Female sex was associated with more Personal Growth, and more negative impact. CCS more highly educated, partnered, and employed had higher positive and lower negative impact. CCS older at diagnosis reported more positive impact. CNS tumor survivors and those who had head/cranium radiotherapy had higher negative impact. CNS tumor survivors reported less positive impact. Conclusion and implications The majority of CCS reported positive impact of cancer while most CCS reported little negative impact. While this may indicate resiliency in most CCS, health care providers should be aware that they can also experience survivor-specific challenges that warrant monitoring/screening, information provision and psychosocial support.

The Health Care Utilization and Medical Costs in Long-Term Follow-Up of Children Diagnosed With Leukemia, Solid Tumor, or Brain Tumor: Population-Based Study Using the National Health Insurance Claims Data

Article

Full-text available

Mar 2023

Background Childhood cancer survivors are at a high risk of medical consequences of their disease and treatment. There is growing information about the long-term health issues of childhood cancer survivors; however, there are very few studies describing the health care utilization and costs for this unique population. Understanding their utilization of health care services and costs will provide the basis for developing strategies to better serve these individuals and potentially reduce the cost. Objective This study aims to determine the utilization of health services and costs for long-term survivors of childhood cancer in Taiwan. Methods This is a nationwide, population-based, retrospective case-control study. We analyzed the claims data of the National Health Insurance that covers 99% of the Taiwanese population of 25.68 million. A total of 33,105 children had survived for at least 5 years after the first appearance of a diagnostic code of cancer or a benign brain tumor before the age of 18 years from 2000 to 2010 with follow-up to 2015. An age- and gender-matched control group of 64,754 individuals with no cancer was randomly selected for comparison. Utilization was compared between the cancer and no cancer groups by χ2 test. The annual medical expense was compared by the Mann-Whitney U test and Kruskal-Wallis rank-sum test. ResultsAt a median follow-up of 7 years, childhood cancer survivors utilized a significantly higher proportion of medical center, regional hospital, inpatient, and emergency services in contrast to no cancer individuals: 57.92% (19,174/33,105) versus 44.51% (28,825/64,754), 90.66% (30,014/33,105) versus 85.70% (55,493/64,754), 27.19% (9000/33,105) versus 20.31% (13,152/64,754), and 65.26% (21,604/33,105) versus 59.36% (38,441/64,754), respectively (all P

Survival and long‐term socioeconomic consequences of childhood and adolescent onset of brain tumours

Article

Full-text available

Nov 2022
DEV MED CHILD NEUROL

Aim To evaluate survival distributions, long‐term socioeconomic consequences, and health care costs in patients with childhood and adolescent onset of brain tumours in a Danish nationwide prospective cohort study. Method A search of national registries identified 2283 patients (1198 males, 1085 females; mean age 9 years 6 months [SD 5 years 7 months]) diagnosed with a brain tumour between 1980 and 2015 and aged no older than 18 years at diagnosis. These were compared with sex‐, age‐, and residency‐matched comparison individuals. Patients with malignant tumours were compared with those with benign tumours. Survival distributions were estimated by the Kaplan–Meier method and hazard ratio by the Cox proportional hazard model. Socioeconomic data at age 20 and 30 years were assessed. Results The probability of mortality was highest during the first year after tumour diagnosis. In young adulthood, the patients were generally less likely to be married, had lower grade‐point averages, educational levels, and income, were less likely to be in employment, and had higher health care costs than comparison individuals. Patients with malignant tumours had worse outcomes with respect to education, employment, and health care costs than those with benign tumours. Interpretation A diagnosis of brain tumour in childhood and adolescence adversely affects survival and has negative long‐term socioeconomic consequences, especially in patients with malignant tumours. These patients require continuous social support.

Health insurance among survivors of childhood cancer following Affordable Care Act implementation

Article

May 2024

Background The Affordable Care Act (ACA) increased private non-employer health insurance options, expanded Medicaid eligibility, and provided pre-existing health conditions protections. We evaluated insurance coverage among long-term adult survivors of childhood cancer pre/post-ACA implementation. Methods Using the multicenter Childhood Cancer Survivor Study, we included participants from two cross-sectional surveys: pre-ACA (2007-2009; survivors: N = 7,505; siblings: N = 2,175) and post-ACA (2017-2019; survivors: N = 4,030; siblings: N = 987). A subset completed both surveys (1,840 survivors; 646 siblings). Multivariable regression models compared post-ACA insurance coverage and type (private/public/uninsured) between survivors and siblings and identified associated demographic and clinical factors. Multinomial models compared gaining and losing insurance vs staying the same among survivors and siblings who participated in both surveys. Results The proportion with insurance was higher post-ACA (survivors pre-ACA 89.1% to post-ACA 92.0% [+2.9%]; siblings pre-ACA 90.9% to post-ACA 95.3% [+4.4%]). Post-ACA insurance coverage was greater among those age 18-25 (survivors: 15.8% vs < 2.3% ages 26+; siblings +17.8% vs < 4.2% ages 26+). Survivors were more likely to have public insurance than siblings post-ACA (18.4% vs 6.9%; odds ratios [OR]=1.7, 95%CI 1.1-2.6). Survivors with severe chronic conditions (OR = 4.7, 95%CI 3.0-7.3) and those living in Medicaid expansion states (OR = 2.4, 95%CI 1.7-3.4) had increased odds of public insurance coverage post-ACA. Among the subset completing both surveys, low/mid income survivors (<

60,000) experienced both insurance losses and gains in reference to highest household income survivors (≥

100,000), relative to odds of keeping the same insurance status. Conclusions Post-ACA, more childhood cancer survivors and siblings had health insurance, although disparities remain in coverage.

Financial Hardship & Neighborhood Socioeconomic Disadvantage in Long-term Childhood Cancer Survivors

Article

Apr 2024

Background Long-term survivors of childhood cancer face elevated risk for financial hardship. We evaluate whether childhood cancer survivors live in areas of greater deprivation and the association with self-reported financial hardships. Methods We performed a cross-sectional analysis of data from the Childhood Cancer Survivor Study between 1970 and 1999 and self-reported financial information from 2017 to 2019. We measured neighborhood deprivation with the Area Deprivation Index (ADI) based on current zip code. Financial hardship was measured with validated surveys that captured behavioral, material and financial sacrifice, and psychological hardship. Bivariate analyses described neighborhood differences between survivors and siblings. Generalized linear models estimated effect sizes between ADI and financial hardship adjusting for clinical factors and personal socioeconomic status. Results Analysis was restricted to 3475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 years (interquartile range [IQR] = 33-46 years and 47 years (IQR = 39-59 years), respectively. Survivors resided in areas with greater deprivation (ADI ≥ 50: 38.7% survivors vs 31.8% siblings; P < .001). One quintile increases in deprivation were associated with small increases in behavioral (second quintile, P = .017) and psychological financial hardship (second quintile, P = .009; third quintile, P = .014). Lower psychological financial hardship was associated with individual factors including greater household income (≥$60 000 income, P < .001) and being single (P = .048). Conclusions Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Neighborhood-level disadvantage and personal socioeconomic circumstances should be evaluated when trying to assist childhood cancer survivors with financial hardships.

Job lock among survivors of childhood cancer and their spouses post Affordable Care Act implementation: A Childhood Cancer Survivor Study brief report

Article

Dec 2023
PEDIATR BLOOD CANCER

It is unknown how common job lock (i.e., staying at job to maintain health insurance) remains among childhood cancer survivors after Affordable Care Act (ACA) implementation in 2010. We examined prevalence of and factors associated with job lock using a cross‐sectional survey from the Childhood Cancer Survivor Study (3503 survivors; 942 siblings). Survivor, spousal, and any survivor/spouse job lock were more frequently reported by survivors than siblings. Survivor job lock/any job lock was associated with older age, low income, severe chronic conditions, and debt/inability to pay debt. Job lock remains more common among survivors than siblings after ACA implementation.

Financial hardship in childhood cancer survivors treated with hematopoietic cell transplant: A report from the Childhood Cancer Survivor Study

Article

Aug 2023

Background: Long-term survivors of childhood cancer are at risk for financial hardship. However, it is not known if HCT leads to an incremental change in financial hardship for survivors who received it vs. those who did not. We examined financial outcomes among adult survivors of childhood cancer who had undergone HCT. Methods: Using a cross-sectional survey in the Childhood Cancer Survivor Study population between 2017-2019, self-reported financial hardship was compared between survivors who received HCT, survivors treated without HCT ("non-HCT"), and siblings and categorized into 3 domains (material hardship/financial sacrifices, behavioral, and psychological hardship). The standardized score of each domain of financial hardship was calculated by adding the item responses and dividing by the standard deviation among siblings. Multivariable linear and logistic regression evaluated associations between socio-demographics, cancer diagnosis, post-treatment complications and financial hardship among survivors. Results: Mean adjusted score for each hardship domain among HCT survivors (n=133) was not significantly different from non-HCT survivors (n=2711): material hardship/financial sacrifices (mean difference 0.18, 95% confidence interval [CI] [-0.05, 0.41]), behavioral hardship (0.07, [-0.18, 0.32]), psychological hardship (0.19, [-0.04, 0.42]). Within specific items, a higher proportion of survivors treated with HCT reported greater financial hardship compared to non-HCT survivors. HCT survivors also had significantly higher mean domain scores compared to sibling controls (n=1027) in all domains. Household income and chronic health conditions, but not HCT, were associated with financial hardship among all survivors. Conclusions: Adult survivors of childhood cancer treated with HCT do not report greater overall financial hardship compared to non-HCT survivors; but greater overall financial hardship compared to sibling controls. Surveillance and intervention may be necessary for all survivors regardless of HCT status.

Financial Toxicity in Cancer Care: Implications for Clinical Care and Potential Practice Solutions

Article

Apr 2023
J CLIN ONCOL

Patients with cancer face an array of financial consequences as a result of their diagnosis and treatment, collectively referred to as financial toxicity (FT). In the past 10 years, the body of literature on this subject has grown tremendously, with a recent focus on interventions and mitigation strategies. In this review, we will briefly summarize the FT literature, focusing on the contributing factors and downstream consequences on patient outcomes. In addition, we will put FT into context with our emerging understanding of the role of social determinants of health and provide a framework for understanding FT across the cancer care continuum. We will then discuss the role of the oncology community in addressing FT and outline potential strategies that oncologists and health systems can implement to reduce this undue burden on patients with cancer and their families.

Insurance, legal, and financial hardships of childhood and adolescent cancer survivors—a systematic review

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