Uptake of fertility preservation among adolescents and young adults diagnosed with cancer: A modified systematic review of rates, determinants, and disparities
Data files
Sep 22, 2026 version files 1.05 MB
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Fig1.jpg
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README.md
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S1_Checklist.csv
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S1_Checklist.pdf
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S1_Table.csv
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S1_Table.pdf
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S2_Table.csv
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S2_Table.pdf
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Abstract
Fertility preservation (FP) is a recognised quality-of-life priority for adolescents and young adults (AYAs) diagnosed with cancer, yet uptake remains consistently low despite established international guidelines that call for early fertility counselling. This review synthesised global evidence on FP uptake rates, determinants, and disparities among AYAs aged 13-39 years with cancer, to inform clinical practice, service development, and policy. A systematic search of MEDLINE, Embase, CINAHL, and PsycINFO identified peer-reviewed studies published between January 2010 and May 2026. Studies were selected against PICOS criteria and quality-appraised with the Newcastle-Ottawa Scale and an adapted cross-sectional tool. Narrative synthesis following SWiM guidance was applied to 32 included studies across four domains: quantitative uptake rates; patient-level determinants; provider-level factors; and health system factors. Female uptake of oocyte or embryo cryopreservation ranged from 1-5 % in population-based settings to 10-54 % in specialised oncofertility centres. Male sperm banking rates were substantially higher, at 51-71 %. Younger age, nulliparity, higher education, and private insurance predicted greater uptake. Non-White race or ethnicity, lower socioeconomic status, rural residence, and the absence of a systematic referral pathway were associated with markedly reduced uptake. FP remains substantially underused despite clear clinical guidance. Closing the gap will require action on three fronts at once: provider education, institutional referral pathways, and insurance and funding reform.
Uptake of Fertility Preservation Among Adolescents and Young Adults Diagnosed With Cancer: A Modified Systematic Review of Rates, Determinants, and Disparities
Author: Kawungu Saad Sessimba
Affiliation: Faculty of Sexual and Reproductive Health, University of South Wales, Pontypridd, United Kingdom
Corresponding Author: Kawungu Saad Sessimba (aklatsad@gmail.com)
ORCID: https://orcid.org/0009-0001-4045-7633
Associated manuscript: Submitted to PLOS ONE, manuscript number PONE-D-26-44231.
Note on this deposit: This Dryad deposit contains the data extracted and appraised for this systematic review, the PRISMA 2020 flow diagram, and the completed PRISMA 2020 reporting checklist. It does not include the manuscript or cover letter, which are submitted to the journal rather than deposited here. S1 Table, S2 Table, Fig1, and the PRISMA checklist are also being submitted as supplementary files with the PLOS ONE manuscript.
1. Dataset Overview
This dataset contains the study-level data extracted and quality-appraised for a systematic review of fertility preservation (FP) uptake among adolescents and young adults (AYAs) aged 13–39 years diagnosed with cancer. No primary data were collected; all data in this deposit were extracted from previously published, peer-reviewed literature.
| Item | Details |
|---|---|
| Associated manuscript | Submitted to PLOS ONE, manuscript number PONE-D-26-44231 |
| Databases searched | MEDLINE (via PubMed), Embase, CINAHL, PsycINFO |
| Search date range | January 2010 – May 2026 |
| Selection framework | PICOS (Population, Intervention/Exposure, Comparator, Outcomes, Study design) |
| Synthesis approach | Narrative synthesis following SWiM (Synthesis Without Meta-analysis) guidance |
| Studies identified (pre-screening) | 3,412 (MEDLINE/PubMed 1,248; Embase 892; CINAHL 743; PsycINFO 529) |
| Studies included | 32 |
| Quality appraisal tools | Newcastle-Ottawa Scale (cohort and registry studies); adapted Joanna Briggs Institute (JBI) checklist (cross-sectional, qualitative, and review studies) |
| Funding | None received for this study |
2. Files in This Dryad Deposit
| File Name | Description | Format |
|---|---|---|
S1_Table.pdf |
Data extraction summary for all 32 included studies: author/year, country, design, sample size, counselling rate, procedure rate, and key disparity or determinant finding | |
S1_Table.csv |
Same data as S1_Table.pdf, in machine-readable form |
CSV |
S2_Table.pdf |
Quality assessment summary for all 32 included studies: design, appraisal tool used, score, and quality rating | |
S2_Table.csv |
Same data as S2_Table.pdf, in machine-readable form |
CSV |
Fig1.jpg |
PRISMA 2020 flow diagram showing the study selection process, from database search through to the 32 studies included in synthesis | JPG |
S1_Checklist.pdf |
Completed PRISMA 2020 checklist, showing where each reporting item is addressed in the manuscript | |
S1_Checklist.csv |
Same checklist as S1_Checklist.pdf, in machine-readable form |
CSV |
README_AYA_Dryad.md |
This file - deposit documentation | Markdown |
Not included in this deposit: the manuscript and cover letter, which are submitted to the journal rather than deposited here. See Section 8 for how to find the associated manuscript once published.
Note on the piloted data-extraction form: the manuscript's Data Availability Statement offers this on request from the author, rather than as a deposited file. If you would like it included in this Dryad deposit instead, add it as an additional file before finalising the submission.
3. Abbreviations
| Abbreviation | Full Form |
|---|---|
| FP | Fertility Preservation |
| AYA | Adolescent and Young Adult |
| PICOS | Population, Intervention/Exposure, Comparator, Outcomes, Study design |
| SWiM | Synthesis Without Meta-analysis |
| PRISMA | Preferred Reporting Items for Systematic Reviews and Meta-Analyses |
| NOS | Newcastle-Ottawa Scale |
| JBI | Joanna Briggs Institute |
| LMIC | Low- and Middle-Income Country |
| NR | Not Reported (in the original source study) |
| N/A | Not Applicable |
4. Software Requirements
- A PDF reader (e.g., Adobe Acrobat) to open
S1_Table.pdf,S2_Table.pdf, andS1_Checklist.pdf - A spreadsheet or text editor (e.g., Excel, Google Sheets, or any plain-text editor) to open
S1_Table.csv,S2_Table.csv, andS1_Checklist.csv - An image viewer to open
Fig1.jpg - Any text editor for the
.mdfile (e.g., Notepad, TextEdit, VS Code)
No specialised statistical or qualitative analysis software is required to view the deposited files. The CSV files can be opened directly in Excel, R, or Python for further analysis.
5. Access and Usage Restrictions
All data in this deposit were extracted from previously published, publicly available, peer-reviewed literature. No primary human-subjects data were collected for this review, and no participant confidentiality considerations apply to any file in this deposit.
Everything in this Dryad deposit is made available under the CC0 license waiver, which allows reuse without restriction. There is no request or approval procedure for any file listed in Section 2.
Users reusing the extracted data are encouraged to also consult and cite the original 32 source studies (listed in the manuscript's reference list and in S1 Table) for the full context of each finding.
6. Ethics Statement
This study did not involve primary data collection from human participants and drew exclusively on previously published, peer-reviewed literature. Ethical approval from a Research Ethics Committee or equivalent body was therefore not required, and no ethics reference number applies to this deposit.
7. Variables and Data Structure
S1 Table: Data Extraction Summary (S1_Table.pdf / S1_Table.csv)
| Column | Description |
|---|---|
| Author, year | First author surname and publication year |
| Country | Country or region where the study was conducted |
| Design | Study design (e.g., prospective cohort, cross-sectional, narrative review) |
| n | Sample size, where reported |
| Counselling rate | Proportion of eligible patients who received FP counselling, where reported |
| Procedure rate | Proportion of eligible patients who underwent an FP procedure, where reported |
| Key disparity or determinant finding | Summary of the study's main reported determinant(s) of, or disparity in, FP uptake |
Studies marked N/A for counselling/procedure rate are qualitative, review, or contextual studies that did not report quantitative uptake rates but contributed contextual or mechanistic evidence.
S2 Table: Quality Assessment Summary (S2_Table.pdf / S2_Table.csv)
| Column | Description |
|---|---|
| Study | First author surname and publication year |
| Design | Study design |
| Appraisal tool | Newcastle-Ottawa Scale (NOS) for cohort and registry studies; adapted JBI checklist for cross-sectional, qualitative, and review studies |
| Score | Numeric score, where a formal appraisal tool with a scoring system was used |
| Quality rating | High, Moderate, or Low (NOS: 7–9 high, 4–6 moderate, 0–3 low; adapted JBI: 6–8 high, 4–5 moderate) |
"Contextual evidence" denotes review or qualitative studies scored with the appropriate JBI tool where a numeric quality score was not the primary output; these studies supplement and contextualise the quantitative findings rather than provide primary uptake data.
Fig1: PRISMA 2020 Flow Diagram (Fig1.jpg)
Depicts the study selection process: 3,412 records identified across four databases, 1,226 duplicates removed, 2,186 records screened at title/abstract (1,968 excluded), 218 retrieved for full-text review, 186 full texts assessed (154 excluded), and 32 studies included in the final synthesis, with exclusion reasons and counts given at each stage.
S1 Checklist: PRISMA 2020 Checklist (S1_Checklist.pdf / S1_Checklist.csv)
A completed 27-item PRISMA 2020 checklist indicating where each reporting item is addressed in the associated manuscript.
8. Citation Information
The manuscript associated with this dataset has been submitted to PLOS ONE (manuscript number PONE-D-26-44231) and is not part of this Dryad deposit. When using data from this deposit, please cite as:
Sessimba KS. Uptake of fertility preservation among adolescents and young adults diagnosed with cancer: a modified systematic review of rates, determinants, and disparities. [Manuscript submitted for publication, PLOS ONE, PONE-D-26-44231]. 2026.
For data requests or further information:
Corresponding Author: Kawungu Saad Sessimba
Email: aklatsad@gmail.com
9. Version Control
| Version | Date | Changes | Author |
|---|---|---|---|
| 1.0 | September 2026 | Initial Dryad deposit README, describing the deposit specifically (S1 Table and S2 Table only); manuscript, cover letter, PRISMA checklist, and flow diagram figure excluded as they are submitted with the journal manuscript rather than deposited as data | KSS |
| 1.1 | September 2026 | Revised per curator feedback to match the deposit's actual contents: added Fig1.jpg (PRISMA 2020 flow diagram) and S1_Checklist.pdf (completed PRISMA 2020 checklist) as included deposit files; updated S1_Table and S2_Table file format from Word (.docx) to PDF; removed the flow diagram and checklist from the "not included" list, as only the manuscript and cover letter remain outside this deposit |
KSS |
| 1.2 | September 2026 | Revised per further curator feedback: added the associated PLOS ONE manuscript number (PONE-D-26-44231) to Sections 1 and 8; added CSV companion files for S1 Table, S2 Table, and the PRISMA checklist for machine readability, alongside the existing PDFs; confirmed sole authorship and no funding for this study | KSS |
10. Acknowledgements
The author thanks Dr Neha Gami for supervision throughout this project, including expert guidance, intellectual rigour, and constructive feedback that shaped its quality and depth.
11. Contact Information
Study Contact:
- Name: Kawungu Saad Sessimba
- Email: aklatsad@gmail.com
- Affiliation: Faculty of Sexual and Reproductive Health, University of South Wales, Pontypridd, United Kingdom
- ORCID: https://orcid.org/0009-0001-4045-7633
This README file was prepared by the author to describe the contents of this Dryad deposit and to facilitate appropriate reuse of the data.
Methods Summary
Design: A modified systematic review following PRISMA 2020 guidance, chosen for transparency and reproducibility given heterogeneous study populations and outcomes. No ethics approval was needed (published literature only), and the review protocol was not pre-registered — noted explicitly as a limitation.
Search strategy: Four databases searched (MEDLINE/PubMed, Embase, CINAHL, PsycINFO) in April 2026, combining MeSH/Emtree terms and free-text keywords across three PICOS blocks — population (AYA/adolescent/young adult), condition (cancer/oncology), and intervention/outcome (fertility preservation, cryopreservation, referral, uptake, etc.). Restricted to English-language peer-reviewed primary research, Jan 2010–Apr 2026, supplemented by citation searching of key included studies.
Eligibility (PICOS):
- Population: AYAs aged 13–39 with any cancer diagnosis
- Intervention: FP counselling, referral, or procedure completion
- Outcomes: quantitative uptake rates, associated factors, subgroup disparities
- Design: cohort, cross-sectional, registry, or clinical series (≥30 participants); excluded case reports/series, editorials, abstracts, narrative reviews, grey literature
Study selection: 3,412 records identified → 2,186 after deduplication → 218 full texts retrieved → 186 assessed → 32 studies included (18 cohort, 11 cross-sectional, 3 registry-based), documented in a PRISMA flow diagram.
Data extraction: Standardised, piloted form capturing study characteristics, population demographics, uptake outcomes (by sex/cancer type where available), determinants at patient/provider/system level with effect estimates, and reported disparities. Discrepancies resolved by returning to source; full data in S1 Table.
Quality assessment: Newcastle-Ottawa Scale for cohort studies (7–9 = high, 4–6 = moderate, 0–3 = low); adapted JBI checklist for cross-sectional studies; custom criteria (representativeness, completeness, coding validity) for registry studies. Quality informed weighting in the narrative synthesis, with sensitivity analyses restricted to high-quality studies where relevant (full results in S2 Table).
Synthesis: Narrative synthesis following SWiM guidance (no meta-analysis, due to heterogeneity), organized into four planned domains (uptake rates; patient-, provider-, and system-level determinants) plus a fifth domain (psychosocial/long-term outcomes) added inductively. Descriptive ranges reported for sex-disaggregated uptake rather than pooled estimates.