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25 September 2023

Education, Employment, and Financial Outcomes in Adolescent and Young Adult Cancer Survivors—A Systematic Review

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1
Faculty of Health Sciences and Medicine, University of Lucerne, Alpenquai 4, 6005 Lucerne, Switzerland
2
Cancer Registry of Central Switzerland, 6000 Lucerne, Switzerland
3
Division of Hematology & Oncology, Children’s Hospital of Eastern Switzerland, 9006 St. Gallen, Switzerland
4
Department of Pediatrics, McMaster Children’s Hospital and McMaster University, Hamilton, ON L8N 3Z5, Canada

Abstract

Adolescents and young adults (AYAs) with cancer face unique challenges. We aimed to describe (i) education, employment, and financial outcomes and (ii) determinants for adverse outcomes in AYA cancer survivors. We performed a systematic literature search. We included original research articles on AYA (15–39 years of age) cancer survivors (≥2 years after diagnosis) and our outcomes of interest. We narratively synthesized the results of the included articles. We included 35 articles (24 quantitative and 11 qualitative studies). Patients in education had to interrupt their education during cancer treatment, and re-entry after treatment was challenging. After treatment, most survivors were employed but started their employment at an older age than the general population. Overall, no disadvantages in income were found. Survivors reported more absent workdays than comparisons. We identified chemotherapy, radiotherapy, late effects or health problems, female sex, migration background, and lower education associated with adverse outcomes. Although most AYA cancer survivors were able to re-enter education and employment, they reported difficulties with re-entry and delays in their employment pathway. To facilitate successful re-entry, age-tailored support services should be developed and implemented.

1. Introduction

AYAs are diagnosed with cancer during a unique and challenging period of their life [1,2]. The transitional time between childhood and adulthood is characterized by psychosocial milestones related to completing education, starting their employment pathway, and gaining social and financial independence from parents [1,3,4,5,6,7,8]. The cancer diagnosis may interfere with these psychosocial achievements. It has been shown that psychosocial problems after cancer are more prevalent in AYAs than in older adults [9]. This indicates that cancer might be especially disruptive in AYAs and emphasizes the importance of psychosocial health in AYA cancer survivors.
Cancer in young people is different from cancer in children or cancer in older adults: The epidemiology, the biology of the tumors, and the psychosocial needs of AYA cancer survivors and late outcomes after the cure of the cancer are unique in this specific age group [10,11,12,13,14]. In Europe, about 112′000 AYAs were diagnosed with cancer in 2020 [15]. Survival nowadays exceeds 80% in Europe [16].
The majority of AYA cancer survivors returned to school or work after the end of treatment [17]. However, many AYA cancer survivors reported that cancer had a negative impact on their plans for work or school [17] and that returning to work was challenging [18]. Regarding survivors’ educational achievements, some studies indicate different educational pathways for survivors compared to the general population [19,20]. Other studies did not find any differences in educational attainment between survivors and comparisons [21]. However, survivors reported disruptions in their education due to the cancer diagnosis [21]. Regarding employment, some studies did not report an increased risk of unemployment in survivors [19,20]. They started being engaged in paid employment at an older age compared to the general population [20]. In other studies, survivors were less likely to be employed compared to the general population [21,22], and this difference was especially pronounced for health-related unemployment [21].
Cancer and its treatment and disruptions or delays in employment might lead to financial hardship. Different pathways have been suggested for this adverse outcome. Many survivors experience chronic conditions, which are associated with significant increases in medical expenditures and health care use [23]. Furthermore, different educational pathways and a higher risk of unemployment might also increase financial hardship [24,25,26].
A comprehensive overview of education, employment, and financial outcomes in survivors of AYA cancer is lacking. This systematic review aimed to describe (i) education, employment, and financial outcomes and (ii) determinants for adverse educational, employment, and financial outcomes in AYA cancer survivors.

2. Methods

This systematic review was registered in PROSPERO (number: CRD42021262353) and complies with the PRISMA statement regarding reporting systematic reviews and meta-analyses [27].

2.1. Search Strategy

The literature search was conducted in August 2020 and updated on 15 February 2022. We searched the databases PubMed, Scopus, and PsychINFO. Included publications were hand-searched for additional references. No restrictions on geographical region or publication language were applied. The search was restricted to studies on humans that were published up to 15 February 2022. The search terms included four blocks with search terms referring to the outcomes (education, work, financial outcomes), adolescent and young adult, cancer, and survivorship (Tables S3 and S4 in Supplementary Material).

2.2. Study Selection

The study selection consisted of two steps: title and abstract screening and full text screening.
To select eligible articles, the following inclusion criteria were hierarchically applied: peer-reviewed original research, a sample size of at least 20 for quantitative studies (no sample size restrictions for qualitative and mixed methods studies), study participants having been diagnosed with cancer, AYA cancer (i.e., at least 75% of participants in the age range of 15–39 years at diagnosis), survivors (i.e., at least 75% of participants at least two years after diagnosis), and one of the three outcomes of interest being the primary outcome presented in the article (education, employment, financial outcomes). Review articles, editorials, commentaries, and conference abstracts were excluded. During the full-text screening, articles from which no full text could be obtained were excluded.
We included quantitative, qualitative, and mixed methods studies and any study designs. Studies with and without comparisons (e.g., general population, siblings) were included. Two reviewers each independently assessed eligibility by first screening titles and abstracts followed by the full texts of the remaining articles (involved authors: A.A., C.B., M.K., K.R.). Discrepancies between reviewers were resolved by discussion and consensus or by consulting a third reviewer (L.M.). Reference lists of relevant review articles were screened for potentially eligible articles.

2.3. Data Extraction

The first author, publication year, country, study design, data source, data collection method, sample size, response rate, and population characteristics, including gender, age at time of study, age at diagnosis, time since diagnosis, cancer types, and education, employment, and financial information (which were mentioned additionally to the primary outcomes of the articles), were extracted. If a comparison group was available, the provided information was extracted as well (Table 1 and Table S1 in Supplementary Material for quantitative studies and Table 2 and Table S2 in Supplementary Material for qualitative studies).

2.4. Quality Assessment

The quality of each study was independently assessed by two reviewers each using the JBI critical appraisal tool [28] (involved authors: A.A., M.K., K.R.). Discrepancies between reviewers were resolved by discussion and consensus. Inter-rater reliability, assessed by Kendall’s tau, was tau = 0.74 for quantitative studies and tau = 0.71 for qualitative studies. The JBI critical appraisal tool was designed to assess methodological validity and determine the extent to which a study considered possible biases in its design, conduct, and analysis. It is suitable for cross-sectional, cohort, and qualitative studies, which are common in this research area [27]. To assess study quality, 8 questions were asked for cross-sectional studies and 10 questions for qualitative studies. These items could be answered with “yes,” “no,” “unclear,” or “not applicable.” To enable a comparable assessment across cross-sectional studies and qualitative studies, the total number of questions answered with “yes” was summed up, and the percentage of “yes” answers was calculated. For cross-sectional studies, a maximum of 8 “yes” and for qualitative studies, a maximum of 10 “yes” answers could be reached (Tables S5 and S6 in Supplementary Material).

2.5. Data Synthesis

Outcomes related to the psychosocial situation of AYA cancer survivors were narratively synthesized. A priori, we did not consider a meta-analytic approach because of the expected heterogeneity in study design, study period, outcome definition across studies, and differences in educational, labor, and financial contexts across geographic regions. The narrative synthesis focused on the educational, employment, and financial outcomes and the determinants for adverse educational, employment, and financial outcomes. Further, the quality of the included studies was evaluated to determine how it may have influenced the synthesis.
Table 1. Characteristics of included quantitative studies.
Table 1. Characteristics of included quantitative studies.
First Author, Publication YearCountryStudy DesignSample SizeResponse RateGender: Percentage MaleAge at Time of StudyAge at DiagnosisTime Since DiagnosisCancer TypesComparisonsStudy Quality
Abdelhadi et al., 2021 [23]USARetrospective cohort studyn = 2326MEPS (2011–2016): 53.5–59.3% for the different yearsAYA cancer survivors with chronic conditions: 23.90% male, AYA cancer survivors without chronic conditions: 21.85% male(Weighted proportions)
AYA cancer survivors with chronic conditions:
18–29 years old: 6.14%, 30–39 years old: 15.52%, 40–49 years old: 24.36%, 50–64 years old: 36.10%, ≥65 years old: 17.88%
AYA cancer survivors without chronic conditions:
18–29 years old: 18.14%, 30–39 years old: 37.52%, 40–49 years old: 27.82%, 50–64 years old: 13.90%, ≥65 years old: 2.70%
range: 15–39 yearsAYA cancer survivors with chronic conditions:
0–4 years: 10.86%, 5–9 years: 12.73%, 10–19 years: 26.31%, ≥20 years: 50.09%
AYA cancer survivors without chronic conditions:
0–4 years: 31.85%, 5–9 years: 22.96%, 10–19 years: 29.43%, ≥20 years: 15.76%
(Weighted proportions)
AYA cancer survivors with chronic conditions:
bladder: 0.70%, brain: 1.69%, breast: 12.57%, cervix: 32.90%, colon: 2.94%, leukemia: 1.72%, lung: 2.07%, lymphoma: 4.42%, melanoma: 9.26%, other: 28.26%, prostate: 1.70%, throat: n/a, thyroid: 3.90%
AYA cancer survivors without chronic conditions:
bladder: n/a, brain: n/a, breast: 11.15%, cervix: 21.86%, colon: 1.76%, leukemia: 1.52%, lung: n/a, lymphoma: 5.45%, melanoma: 10.94%, other: 26.55%, prostate: n/a, throat: n/a, thyroid: 8.50%
None88%
Abdelhadi et al., 2022 [29]USARetrospective cohort studyn = 2081 (n = 1757 for matched analyses)MEPS (2011–2016): 53.5–59.3% for the different years20.0% male18–29 years old: 10.2%, 30–39 years old: 22.9%, 40–49 years old: 27.3%, 50–64 years old: 26.6%, ≥65 years old: 13.0%Range: 15–39 yearsNot reported Not reportedAdults without cancer history (n = 5227)88%
Bhatt et al., 2021 [30]USARetrospective cohort studyn = 1365Not applicable56% maleNot reportedMean age at treatment = 30.8 years old, range: 18–39 years old, 18–24 years old: 19%, 25–29 years old: 26%, 30–34 years old: 27%, 35–39 years old: 28%Median time since treatment = 60.6 months, range: 12–121 monthsLeukemia: 68%, lymphoma: 11%, other malignant diseases: 10%, non-malignant disorders: 11%None100%
Dahl et al., 2019 [31]NorwayCross-sectional studyn = 118942%27% maleMean (SD) = 49.7 (7.8), median = 49 years, range: 27–65 years oldMean (SD) = 33.0 (5.3), median = 35 years old, range: 19–39 years oldMedian = 16 years, range: 6–31 yearsBreast: 41%, colorectal: 12%, lymphoma: 19%, leukemia: 11%, melanoma: 17%None100%
Dieluweit et al., 2011 [20]GermanyCross-sectional studyn = 82043.70%49% maleMean (SD) = 29.9 (6) years oldMean (SD) = 15.8 (0.9) years old, range: 15–18 years oldMean (SD) = 13.7 (6) yearsLymphoma: 30.5%, malignant bone tumor: 21.2%, leukemia: 19.3%, CNS tumors: 9.5%, soft tissue and other extraosseous sarcomas: 9.2%, germ cell tumors: 6.6%, other malignant epithelial neoplasms and malignant melanomas: 2.4%, renal tumors: 0.9%, neuroblastoma: 0.5%Age-matched sample from the general population (German Socio- Economic Panel, n = 820)100%
Ekwueme et al., 2016 [32]USACross-sectional studyn = 244Not reportedAll femaleMean (SD) = 39.42 (5.29) years oldMean (SD) = 34.42 (6.95) years old, range: 18–44 years old<2 years: 30.74%, 2–4 years: 28.69%, 5–10 years: 29.1%, ≥11 years: 11.48%All breastWomen aged 18–44 without breast cancer (n = 82694), women aged 45–64 at diagnosis with breast cancer (n = 1508), women aged 45–64 without breast cancer (n = 52,586)88%
Ghaderi et al., 2013 [33]NorwayRetrospective cohort studyn = 2561Not applicable55.4% male (childhood and AYA cancer survivors)Not reported15–19 years old: 1019, 20–24 years old: 1542Survivors were followed for mean = 13.2 years beginning 5 years after diagnosis (range: 0–39.3 years) (childhood and AYA cancer survivors)Brain/CNS tumors: 18.2%, testis: 15.4%, lymphatic system: 14.4%, hematopoietic system: 12.9%, melanoma: 10.6%, other: 7.4%, thyroid gland and other endocrine glands: 7.3%, bone and connective tissue: 5.6%, kidney: 2.7%, eye: 2.2%, ovary: 2%, cervix uteri: 1.2% (childhood and AYA cancer survivors)Childhood cancer survivors (0–14 years of age at diagnosis; n = 1470) 100%
Guy et al., 2014 [34]USARetrospective cohort studyn = 1464MEPS (2008–2011): 53.5–59.3%22.2% male18–29 years old: 11%, 30–39 years old: 21%, 40–49 years old: 26.7%, 50–64 years old: 29.3%, ≥65 years old: 12%range: 15–39 years0–9 years: 30.5%, 10–19 years: 27.7%, ≥20 years: 41.9%Not reportedAdults without cancer in the pooled sample of 2008–2011 MEPS data (n = 86,865)88%
Hamzah et al., 2021 [35]MalaysiaCross-sectional studyn = 400Not reported43.3% maleMean (SD) = 29.1 (7.16) years old, range: 18–40, 18–20 years old: 12.5%, 21–25 years old: 27%, 26–30 years old: 17.8%, 31–35 years old: 12.8%, 36–40 years old: 30%Not reported>5 yearsLeukemia: 32.25%, Hodgkin lymphoma: 10.0%, ovarian: 8.0%, ependymoma: 7.25%, breast: 6.25%, Wilms’ tumor: 5.75%, Ewing’s sarcoma: 5.75%, testicular: 3.5%, medulloblastoma: 3.5%, brain tumor: 3.25%, yolk sac tumor: 3%, liver cancer: 2.75%, papillary thyroid: 1.5%, nasopharyngeal cancer: 1.5%, neuroblastoma: 1.5%, intestinal: 1.25%, lung: 1%, germinoma: 1%, embryonal rhabdomyosarcoma: 1%None63%
Ketterl et al., 2019 [24]USACross-sectional studyn = 87267%27.2% maleNot reportedFemales: mean (SD) = 32.3 (5.62) years old, males: mean (SD) = 29.8 (6.09) years oldFemales: mean (SD) = 3.53 (1.49) years, males: mean (SD) = 3.40 (1.29) years Breast: 27.6%, leukemia and lymphoma: 18.7%, endocrine system: 14.7%, skin: 9.3%, genital system: 10.9%, brain and other CNS tumors: 4.7%, bones and soft tissue: 4.1%, digestive system: 4.0%, oral cavity and pharynx: 2.9%, urinary system: 1.6%, others: 1.5%None100%
Landwehr et al., 2016 [36]USARetrospective cohort studyn = 33433.60%20.4% maleAge at time of application submission:
mean = 29.3 years old, median = 30.0 years old, 95% CI: 28.7–29.8, SD = 4.4 years old, range: 19–39 years old
Mean (SD) = 24.5 (6.7) years old, median = 26 years old, 95% CI: [23.7–25.2]Time of treatment completion prior application submission:
mean (SD) = 3.5 (4.6) years, median = 1.8 years, 95% CI: 3.0–4.0
Not reportedUS census data from 2011 and 2013 using the groups “under age 35” and “25–34 years of age,” n = 16,513,000, and MEPS using the group “18–44 years of age,” n = 21,877,00088%
Lim et al., 2020 [37]SwitzerlandRetrospective cohort studyn = 176Not applicable43.2% maleNot reportedMedian (SD) age at treatment = 30.3 (±7.6) years old, range: 15.1–39.5 years oldMedian time since treatment = 66 months, range: 12–236 monthsAll brain and skull base tumorsNone50%
Lu et al., 2021 [38]USACross-sectional studyn = 2588NHIS (2010–2018) 64.2–82.0% for the different years32.8% male18–29 years old: 8.3%, 30–39 years old: 23.0%, 40–49 years old: 26.1%, 50–64 years old: 27.4%, 65–80 years old: 12.2%, 81+ years old: 2.9%Median (IQR) = 31 (26–35) years old(Categories are not mutually exclusive)
< 2 years: 8.4%, ≥2 years: 91.6%, > 6 years: 75%, >16 years: 50%, >31 years: 25.0%
Lymphoma: 7.8%, melanoma: 12.3%, testicular cancer: 5.5%, thyroid cancer: 9.1%, ovarian cancer: 7.3%, uterine cancer: 10.8%, leukemia: 1.9%, breast cancer: 15.7%Adults without cancer history (n = 256,964) 88%
Mader et al., 2017 [19]SwitzerlandCross-sectional studyn = 16041.10%61.3% maleMean (SD) = 33.5 (5.9) years old, 20–29 years old: 26.9%, 30–29 years old: 53.1%, ≥40 years old: 20%Mean (SD) = 21.1 (2.9) years old, range: 16–25 years old, 16–20 years old: 43.8%, 21–25 years old: 56.3%Mean (SD) = 11.9 (4.7) yearsLymphoma: 37.5%, germ cell tumor: 28.8%, CNS tumor: 9.4%, soft tissue sarcoma: 9.4%, leukemia: 8.1%, bone tumor: 3.8%, renal tumor: 1.9%, neuroblastoma: 1.3%Swiss Health Survey (SHS), participants aged 20–50 years old, residents in the Canton of Zurich (n = 999)100%
Meernik et al., 2020 [25]USACross-sectional study (restricted to working (full/part-time) at time of diagnosis)n = 132812.80%All femaleMedian (SD) = 41.0 (6.2) years oldMedian (SD) = 34.0 (5.1) years old, range: 16–39 years oldMedian (SD) = 7.0 (3.6) years, range: 3–15 yearsBreast: 41.7%, thyroid: 22.3%, melanoma: 14.4%, lymphoma: 10.4%, gynaecologic (cervical, uterine, ovarian): 11.2%None100%
Nord et al., 2015 [39]SwedenRetrospective cohort studyn = 2146Not reportedAll maleNot reported,Median = 32 years old, range: 18–60 years oldFollow-up for study: median = 10 years, range: 2–19 yearsAll testicularGeneral population without a cancer history (n = 8448)100%
Nugent et al., 2018 [40]USACross-sectional studyn = 23Not reported69.9% maleMean (SD) = 23.8 (4.0) years old, median (IQR) = 22.6 (5.0) years oldMean = 17.4 years old, range: 15–21 years old, length of treatment: mean = 1.2 years≥2 years since active cancer treatmentHodgkin lymphoma: 43.4%, acute lymphoblastic leukemia:17.4%, Ewing’s sarcoma: 8.7%, osteosarcoma: 8.7%, germ cell tumor: 8.7%, acute myelocytic leukemia: 4.3%, chondrosarcoma: 4.3%, non-Hodgkin lymphoma: 4.3%Controls were matched to the cancer survivors, being of the same gender and within 2 years of the survivor’s age (n = 14)88%
Parsons et al., 2012 [17]USACohort studyn = 463 (all AYA cancer survivors)Initial survey: 43.4%, follow-up survey: 88.7%AYA cancer survivors working or in school full-time before diagnosis (n = 388):
64% male
Not reportedAYA cancer survivors working or in school full-time before diagnosis (n = 388):
15–19 years old: 13.1%, 20–24 years old: 17.8%, 25–29 years old: 24.7%, 30–34 years old: 23.2%, 35–39 years old: 21.1%
AYA cancer survivors working or in school full-time before diagnosis (n = 388):
15–19 months: 13.1%, 20–24 months: 42.5%, 25–29 months: 34%, 30–35 months: 10.1%, range: 25–35 months
Germ cell: 40.5%, Hodgkin’s lymphoma: 26%, non-Hodgkin’s lymphoma: 24.2%, sarcoma: 4.6%, acute lymphoblastic leukemia: 3.9%AYA cancer survivors 15–24 months after diagnosis and working or in school full-time before diagnosis (n = 216)100%
Strauser et al., 2010 [41]USALongitudinal study (restricted to AYACS who were unemployed at time of application for vocational services)n = 368Not reported57% maleMean (SD) = 21.46 (2.39) years old, range: 18–25 years oldNot reported>2 yearsNot reportedNone63%
Sylvest et al., 2022 [42]DenmarkRegister-based cohort studyn = 4222Not applicable100% male≥ 35 yearsRange: 0–29 years,CNS cancer:
mean (SD) = 14.59 (9.30) years, hematological cancer: mean (SD) = 16.68 (10.67) years, solid cancer: mean (SD) = 9.37 (8.47) years
CNS tumors: 5.0%, hematological tumors: 6.5%, solid tumors: 88.5%Age-matched comparison group of the general population (n = 794,589)100%
Tangka et al., 2020 [43]USACross-sectional studyn = 83028.40%All femaleNot reported18–34 years old: 39.5%, 35–39 years old: 60.5%Not reportedAll breast cancerNone100%
Tebbi et al., 1989 [44]USACross-sectional studyn = 4030%40% maleMean (SD) = 26.4 (4.2) years old, range: 18–35 years oldMean = 16.15 years old, range: 13–19 years oldMean (SD) = 10.1 (3.2) yearsHodgkin’s/non-Hodgkin’s lymphoma: 47.5%, soft tissue sarcoma/melanomas: 20.0%, leukemia: 7.5%, bone tumors: 20.0%, ovarian/testicular: 5.0%15 male and 25 female controls without a cancer history and with age range from 18 to 35 years old (n = 40)88%
Thom et al., 2021 [45]USACross-sectional studyn = 21265%8.9% maleMean (SD) = 35.3 (5.25) years oldMean (SD) = 27.4 (7.17) years oldMean (SD) time since treatment = 6.2 (5.89) yearsBreast: 27.8%, lymphoma: 16.5%, colorectal: 11.3%, leukemia: 9.4%, brain: 7.1%, gynecological: 6.1%, sarcoma: 6.1%, thyroid: 4.7%, other: 8.0%, prefer not to respond: 0.5%None88%
Yanez et al., 2013 [46]USACross-sectional studyn = 10666.50%31.6% maleMean (SD) = 32.2 (5.1) years oldNot reportedRange: 25–60 months, 3 years after treatment completion: 41%, 4 years after treatment completion: 31%, 5 years after treatment completion: 28%Breast: 24.8%, cervical: 11.5%, melanoma: 9.7%, lung: 8.0%, colorectal: 3.5%, thyroid: 9.7%, testicular: 4.4%AYA cancer survivors 0–24 months after diagnosis (n = 216)88%
Abbreviations: d, diagnosis; s, study; t, treatment; fu, follow-up; CI, confidence interval; IQR, interquartile range; SD, standard deviation; NHIS, National Health Interview Surveys; MEPS, Medical Expenditure Panel Survey; CNS, central nervous system; RM, Malaysian ringgit.
Table 2. Characteristics of included qualitative studies.
Table 2. Characteristics of included qualitative studies.
First Author, Publication YearCountryStudy Design or Approach, Analysis MethodSample SizeGender: Percentage MaleAge at Time of StudyAge at DiagnosisTime Since DiagnosisCancer TypesStudy Quality
An et al., 2019 [47]South KoreaGrounded theory/thematic analysisn = 1421.43% maleRange: 14–22 years oldNot reportedNot reported; adolescents who visited a hospital for follow-up care following treatment for leukemiaAcute lymphoid leukemia: 42.9%, acute myeloid leukaemia: 50%, chronic myeloid leukemia: 7.1%80%
Brauer et al., 2017 [48]USAGrounded theory; systematic yet flexible coding processn = 1861.1% maleMean = 26 years old, range: 19.8–34.6 years oldAge at treatment:
mean = 23.3 years old, range: 18.5–29.7 years old
Time since treatment:
mean = 32.8 months, range: 8–60 months
Acute myeloid leukemia: 56%, acute lymphoblastic leukemia: 28%, Hodgkin’s lymphoma: 11%, non-Hodgkin’s lymphoma: 5%70%
Drake et al., 2019 [49]CanadaPhenomenology; thematic analysisn = 540% maleMean (SD) = 32 (6.78) years old, range: 25–40 years oldRange: 18–39 years oldNot reported5 participants with Hodgkin’s lymphoma, multiple myeloma, malignant neoplasm of the pineal region, thyroid cancer, and appendix cancer80%
Elsbernd et al., 2018 [50]DenmarkThematic analysisn = 922.2% maleMean = 24.2 years old, median = 25 years old, range: 19–27 years oldRange: 17–24 years oldTime since last treatment:
range: < 1–> 10 years
9 participants with lymphoma (2), breast (2), leukemia, cervical, testicular, pancreatic, and brain tumor50%
Ghazal et al., 2021 [51] USACross-sectional studyn = 4036.5% maleNot reportedMedian (SD) = 28 (5.26) years old, range: 20–38 years oldRange: 1–5 yearsLymphoma: 82.5%, leukemia: 17.5%90%
Gupta et al., 2020 [52]USAThematic analysis combined with an abductive approachn = 5259.6% maleMean (SD) = 25.29 (2.88) years old, range: 18–29 years oldNot reportedMean (SD) = 31.25 (17.12) monthsHematologic: 61.5%, testicular: 38.5%70%
Kent et al., 2012 [53]USAHermeneutic phenomenology (interpretative method); grounded theory; narrative analysisn = 1952.6% male15–19 years old: 5.3%, 20–23 years old: 10.5%, 24–26 years old: 15.8%, 27–29 years old: 15.8%, 30–33 years old: 26.3%, 34–36 years old: 21.1%, 37–39 years old: 5.3%15–19 years old: 15.8%, 20–23 years old: 21.1%, 24–26 years old: 21.1%, 27–29 years old: 21.1%, 30–33 years old: 10.5%, 34–36 years old: 10.5%Range: 6 months–6 yearsNon-Hodgkin’s lymphoma: 21.1%, Hodgkin’s: 10.5%, brain tumor: 10.5%, acute lymphoblastic leukemia: 10.5%, ovarian: 10.5%, melanoma: 5.3%, Wilm’s tumor: 5.3%, testicular: 5.3%, ovarian: 5.3%, acute lymphoblastic leukemia: 5.3%, multiple myeloma: 5.3%, aplastic anemia: 5.3%60%
Magrath et al., 2021 [54]United KingdomPhenomenological analysis, analysis was performed iterativelyn = 850% maleMean = 21.8 years old, median = 21 years old, range: 18–27 years oldMean = 17.6 years old, median = 17.5 years old, range: 16–19 years oldNot reportedBrain tumor: 12.5%, lymphoma: 75%, leukemia: 12.5%90%
Parsons et al., 2008 [55] CanadaPostmodern narrative approach; data analysis occurred in conjunction with data collectionn = 1457.1% maleMean = 27.4 years old, median = 26.5 years old, range: 18–38 years oldMean = 24.2 years old, median = 23 years old, range: 16–35 years oldRange: 1–6 yearsAll osteosarcoma70%
Raque-Bogdan et al., 2015 [56] USAConsensual methodn = 13All femaleRange: 24–43 years oldMean (SD) = 30 (5) years old, median = 27 years old, range: 21–38 years oldMean = 3.54 yearsAll breast80%
Stone et al., 2019 [57]USAConstructivist grounded theory; analytic techniques including initial, focused, axial, and theoretical coding proceduresn = 1225% maleMean = 43.9 years old, range: 28–59 years oldMean = 29 years old, 18–29 years old: 50% 30–39 years old: 50%Mean = 14.8 years, range: 8–35 yearsBreast: 33%, leukemia or lymphoma: 33%, melanoma: 8%, testicular: 317%, thyroid: 8%90%
Abbreviations: d, diagnosis; s, study; t, treatment.

3. Results

Literature Search and Study Characteristics

While searching the three databases, 6651 articles were identified, and finally, 35 articles were included [17,19,20,23,24,25,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57] (Figure 1). We included 24 quantitative (Table 1) and 11 qualitative (Table 2) studies. The majority of the studies were conducted in North America (24, 69%), nine in Europe (26%), and two in Asia (6%). Fourteen of the quantitative studies (58%) studies included a comparison group. The majority of the studies (29, 83%) included different types of cancer. Variations in sample size (quantitative studies: 23–4′222, qualitative studies: 5–52), age at diagnosis or study, and time since diagnosis were observed. Three articles reported only on education outcomes, nine only on employment outcomes, and eight only on financial outcomes. Another six articles described both education and employment outcomes, and nine studies addressed both employment and financial outcomes.
Figure 1. PRISMA flow diagram of included studies.

4. Impact of Cancer

4.1. Education

After being diagnosed with cancer, many AYA cancer survivors experienced a disruption in education [46,48,50] (Table 3). In one study, AYA cancer survivors reported having kept up with school via the Internet while being treated for cancer [47]. Those who left school for cancer treatment wanted to return to school as quickly as possible to keep up with peers but also for a sense of normalcy [47,48,50]. In doing so, they experienced enormous hurdles and challenges, some related to experiencing late effects such as fatigue [54]. Problems arose, especially in re-entry, which could only occur at the beginning of a school year [48,50]. AYA cancer survivors reported different educational pathways compared to the general population: More had completed upper secondary school and fewer university education in Switzerland [19]. In Germany, survivors were more likely to have attended high school, whereas rates of college and university graduation were similar [20]. Survivors of CNS cancer were less progressed in their education compared to age-matched comparisons [42]. On the other hand, survivors of hematological and solid cancers reached higher educational levels [42].
Table 3. Impact of cancer on education outcomes in adolescent and young adult (AYA) cancer survivors.
A stay in the intensive care unit (ICU) during treatment, experiencing visual or hearing late effects, and having a migration background were identified as characteristics associated with lower education [19,20].

4.2. Employment

In most studies investigating employment, the majority of AYA cancer survivors were employed at the time of the study [17,19,20,24,25,31,32,34,35,37,40,41,42,43,44,46] (Table 4). Some survivors reported reduced ability to work and were consequently uncertain whether cancer had long-term effects on their ability [31,49]. Compared to before their cancer diagnosis, more survivors were unemployed after their cancer treatment (19% before treatment, 38% six months after treatment [30]; from 9.5% to 23.8% pre- and post-treatment, respectively [37]), about half of survivors reported paid or unpaid time off, and about 10% of survivors quit or lost their job at diagnosis [43]. In most studies comparing survivors with other populations, there was no difference between the employment rates in survivors and the comparison group [19,20,31,40,44]. One study reported that slightly more AYA cancer survivors were outside the workforce compared to the comparison group [42]. Survivors started being engaged in paid employment at an older age compared to the general population [20]. In one study, AYA cancer survivors were significantly less likely to be employed than the comparison group [34]. In two studies from the USA, AYA cancer survivors reported experiencing employment disruption [25,46]. Breast cancer survivors reported stopping working was impossible due to financial hardship or insurance needs [56]. About half of the survivors preserved employment in the same workplace as before the diagnosis [55,57]. For others, the cancer diagnosis meant a change of perspective, be it that they changed their workplace [50,55,56] or that they reported that the meaning of work had changed [51]. Their cancer diagnosis was seen as a catalyst for a change of career and thus an inspiration for a new beginning [49].
Table 4. Impact of cancer on employment outcomes in adolescent and young adult (AYA) cancer survivors.
Longer time since first cancer diagnosis [31], younger age at diagnosis [19,20], female gender [19,31], lower education [19,31], and experiencing late effects or impaired health [19,20,31] were identified as characteristics associated with unemployment. In another study, with a longer time since end of treatment, the percentage of AYA cancer survivors being unemployed decreased [30].

4.3. Financial Outcomes

Two studies addressed the income of AYA cancer survivors and compared it to the general population [34,36,44] (Table 5). In an early study, AYA cancer survivors had a higher income than the general population [44]. This difference may reflect a strong motivation to achieve higher goals among survivors [44]. In a more recent study, more AYA cancer survivors had a low family income and fewer survivors had a high family income [34]. AYA cancer survivors reported a negative net worth, whereas young adults from the general population reported a positive net worth [36]. Indirect medical costs were reported in three studies, with AYA cancer survivors having reported more missed work days than the comparison group in all studies [32,34,39]. AYA cancer survivors were significantly more likely to experience medical financial hardship compared to adults without a cancer history [29,38], and survivors reported a high level of financial toxicity (financial-related hardship) [45]. About half of the women with breast cancer experienced a financial decline due to their cancer diagnosis [43]. Three Scandinavian studies reported on disability pension uptake [31,33,39]. Compared with the general population, AYA cancer survivors received disability pensions at similar rates [31]. Compared with childhood cancer survivors, AYA cancer survivors were less likely to receive disability pensions [33].
Table 5. Impact of cancer on financial outcomes in adolescent and young adult (AYA) cancer survivors.
Older age at time of study [36], chemotherapy and radiation [24,39], lower education [43,45], psychological distress [29], and more chronic conditions [23] were identified as characteristics associated with a higher financial burden. AYA cancer survivors with more chemotherapy courses were more likely to receive a disability pension [39].

4.4. Study Quality

Although some studies were designed as longitudinal or cohort studies, outcomes were cross-sectionally assessed. The average quality rating for cross-sectional studies (mean = 90%, range: 50–100%; Table 1) was slightly higher than for qualitative studies (mean = 75%; range: 50–90%; Table 2). No conclusive patterns in reported outcomes by study quality were identified.

5. Discussion

With this systematic review, we showed that a cancer diagnosis in adolescence or young adulthood significantly impacted educational, employment, and financial outcomes. Re-entry to school or work after cancer treatment was challenging. After treatment, most survivors were employed but started their employment at an older age than the general population. Overall, no disadvantages in income were found. Survivors reported more absent work days than the comparisons. The main determinants for adverse outcomes were female gender, younger age at diagnosis, chemotherapy and radiotherapy, and experiencing late effects.
Our systematic review is in line with the findings of a previous review on work-related issues in AYA cancer survivors [58]. For many AYA cancer survivors, the cancer diagnosis interrupted their current engagement at school or work. This interruption delayed the attainment of education and work goals and sometimes forced survivors to rely on social security benefits or file for bankruptcy. This did not mean that AYA cancer survivors could not achieve a successful career compared to healthy controls, but they did start the career later. Many survivors were willing to return to school or work, although cancer treatment and its side effects often imposed hurdles. Our review showed that these long-term consequences forced some AYA cancer survivors to wait a certain amount of time to return to school, or for formerly employed survivors, it meant a change of workplace. Whereas some AYA cancer survivors perceived working as a return to normalcy, others described a change in perspective and redefined their professional careers.
One study found that AYA cancer survivors earned more compared to the general population [44]. One reason could be the change in perspective leading to a job change, possibly resulting in survivors earning more than they did before diagnosis [59,60]. For instance, jobs with less physical effort might be, on average, better paid compared to jobs with more physical effort involved. Within AYA cancer survivors, financial outcomes varied with age at the time of the study. Although older survivors earned more [36], as seen in the general population, the study also found that older survivors reported a more severe financial impact [36]. Whereas older survivors were more likely to be married and thus had a potential additional source of income through their partner, they received less parental support, were more likely to have dependent children, and were more likely to own a home compared to younger survivors, indicating the need for more financial resources for older survivors. AYA cancer survivors diagnosed with breast cancer missed more work days and home productivity days (spending more than half of the day in bed due to illness) compared to women without breast cancer, resulting in higher indirect productivity costs [32].
According to this review, AYA cancer survivors diagnosed at a younger age were found to be particularly vulnerable to adverse outcomes. One explanation for the lower educational attainment might be that they were still pursuing education and could not keep up with fellow students due to the interruption caused by cancer [47]. Unemployment might be higher because they may prioritize their health over their career [56,61]. Health insurance is organized differently in different countries. In countries where health insurance is not mandatory or related to employment, an explanation for the high financial burden might be that AYA cancer survivors were believed to be too young to need health insurance before the cancer diagnosis.
Chemotherapy and radiotherapy and a stay in the ICU during treatment were found to be determinants for adverse outcomes in all domains studied [20,39]. ICU stays are costly and associated with an increased number of potentially life-threatening complications that can negatively impact patient prognosis [62,63]. This could prolong their absence from school and work and affect their financial situation in the long run.
Our three outcomes of interest, i.e., education, employment, and financial outcomes, are linked to the different life stages (Figure 2). Whereas educational attainment is the primary focus in adolescence, transitioning to work and gaining financial independence becomes more important in young adulthood. However, all stages of life have one aspect in common: a reciprocal relationship with the state of health. If the state of health is deteriorating, this affects the current stage of life and is also likely to have long-term consequences for the following stage of life. Therefore, it is important to consider these three outcomes as mutually dependent rather than independent factors, also in the case of a cancer diagnosis in adolescence or young adulthood. Taking a holistic approach and considering the reciprocal relationship between outcomes and state of health can ensure a successful career even after a cancer diagnosis in adolescence or young adulthood.
Figure 2. Dynamic interaction between life stages and state of health (own adaptation, based on (Adler et al., 2007 [64]; Fardell et al., 2018 [18]).

6. Limitations and Strengths

Countries have different education, labor, and financial systems. Furthermore, there were significant differences in how the data were collected. This made comparisons across studies challenging. Most of the included studies were based on self-reported data. For these studies, self-report bias might be present. As for other systematic reviews, there is a potential for language and publication bias. We included publications in English and other languages known to the research team (only one publication written in Japanese had to be excluded) and published in the three databases searched.
The comprehensive literature review (search in three relevant databases) is a strength of the study. For this systematic review, over 5000 articles were screened for eligibility. Each article was screened independently by two reviewers, and three reviewers were involved in the decision process. The comprehensive search allowed for the inclusion of studies from different countries with different educational, employment, and financial contexts. The three outcomes were purposely chosen to represent a life course perspective. The carefully selected, mutually exclusive, and collectively exhaustive search terms ensured that we were able to include relevant studies, including a broad range of AYA cancer survivors, different cultural backgrounds, the whole AYA age range at diagnosis, and different time phases after diagnosis. Extensive hand searching and the search update ensured that the most recent articles and articles that would have been missed with the search in the databases were included as well.

7. Implications

Identifying AYA cancer survivors at risk for adverse educational, employment, and financial outcomes is important for developing tailored support strategies for cancer patients and survivors throughout their whole cancer trajectory. We found that most survivors returned to school or work after cancer treatment. However, this re-entry was associated with difficulties and hurdles. To enable a successful return to school or work, AYA cancer survivors should be supported in navigating the system [65] and involve key persons such as peers, teachers, or employers, and employees should be informed and supported as well [66]. Flexible working conditions might help survivors with successfully returning to work [67] and being able to stay in the workforce in the long term. Survivors in their last years of school or their first years of employment might be especially vulnerable to adverse effects on their education and employment. Individual support options focusing on cancer- and treatment-related impairments as well as abilities and potential new directions for their employment should be provided [67]. Furthermore, open conversations about finances should be held with AYA cancer patients and survivors. Such conversations can empower patients and survivors and increase their knowledge about existing financial assistance services. Further research should be done in the area of insurance at a young age. Where health insurance is optional, young people often think they are too young for insurance [68], as chronic illness may affect them less frequently than older people.
Although most AYA cancer survivors experience some degree of negative impact of their diagnosis on education, employment, or financial outcomes, many survivors also do well. It might be worth looking at their strategies to overcome the challenges of a cancer diagnosis during adolescence or young adulthood and to re-enter school or work successfully.
Most of the included studies were of a cross-sectional design. In future research, longitudinal studies in AYA cancer survivors could expand the understanding of the impact of cancer diagnosis and treatment throughout the cancer trajectory. Multiple measurement time points could be used to assess the individual courses of AYA cancer survivors. These results might expand the knowledge on appropriate time points for tailored support to AYA cancer survivors to mitigate their risk for adverse education, employment, and financial outcomes and improve their well-being.

8. Conclusions

Although most AYA cancer survivors were able to re-enter education and employment, they reported difficulties with re-entry and delays in their employment pathway. We found some determinants for adverse outcomes, but the results were heterogeneous. To facilitate successful re-entry, age- and situation-tailored support services along the cancer trajectory should be developed and implemented to prevent future social inequalities and adverse educational, employment, and financial outcomes in the long term.

Supplementary Materials

The following supporting information can be downloaded at: https://www.mdpi.com/article/10.3390/curroncol30100631/s1, Table S1: Characteristics of included quantitative studies (detailed version); Table S2: Characteristics of included qualitative studies (detailed version); Table S3: PICO format for the research questions; Table S4: Search blocks for the search in the literature databases; Table S5: Quality assessment for quantitative cross-sectional studies; Table S6: Quality assessment for qualitative studies.

Author Contributions

Conceptualization, A.A., G.M., L.M. and K.R.; methodology, G.M., L.M. and K.R.; formal analysis, A.A., M.K. and K.R.; investigation, A.A., C.B., M.K., L.M. and K.R.; data curation, K.R.; writing—original draft preparation, A.A. and K.R.; writing—review and editing, C.B., D.D., K.S., G.M. and L.M.; visualization, A.A. and K.R.; supervision, G.M. and K.R.; project administration, K.R.; funding acquisition, K.R. and G.M. All authors have read and agreed to the published version of the manuscript.

Funding

This work was supported by Palatin-Stiftung Switzerland (Nr. 0028/2020 to KR), Krebsliga Zentralschweiz Switzerland (to KR), Avenira Stiftung Switzerland (to KR), and the Swiss National Science Foundation (SNSF, Nr. 10001C_182129/1 to GM).

Conflicts of Interest

The authors declare no conflict of interest.

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