Table 2.

Study Characteristics

Study Reference Number	Study	Location/Setting	Study Population	Methods	Fertility Preservation Related Questions	Themes
Adolescents
A1	(Edge, Holmes et al. 2006)	UK/Identified from the Manchester Children’s Tumour Registry and from hospital records at Royal Manchester Children’s Hospital and the Christie Hospital.	Male, (n=55) Aged 13–21 years who had been offered sperm banking. The average interval between diagnosis and interview was 2.1 years (0–5)	Questionnaires	• Feelings about their future fertility, their diagnosis, • Their understanding of sperm banking both at diagnosis and at time of interview, • The ease with which they and their families could talk about fertility, on simple 1 to 10 visual analogue scales.	Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Sensitive Topic Control of Information & Decision Making Discrepancy between Desired & Actual Experiences
A2	(Chapple, Salinas et al. 2007)	UK/Recruited via doctors, nurses and support groups. Drawn from a wider study, conducted by one of the authors (MS), which explored young people’s experiences of cancer, for Youth Health Talk.	Male, (n=21) previously Diagnosed with cancer. 6 aged 16–18y and 12 age 19-26 at time of interview.	Narrative interviews	• How they learned about the risk of infertility • Information needs • How some experienced sperm banking • Their feelings about possible infertility.	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Hope and Comfort Sensitive Topic Vulnerable Time Control of Information & Decision Making Discrepancy between Desired & Actual Experiences
A3a*linked (Craw2009, Craw2004)	(Crawshaw, Glaser et al. 2008)	UK/Recruitment through 3 Regional Pediatric and Adolescent Cancer Units. Purposive sampling	Males, (n=16) Aged 13 to 20 at diagnosis. Median time since diagnosis was 3 years.	Single in-depth interviews	• Experiences, concerns or satisfactions with sperm banking.	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Hope and Comfort Sensitive Topic Vulnerable Time Control of Information & Decision Making Constrained by Options Discrepancy between Desired & Actual Experiences
A3b *linked (Craw2009, Craw2004)	(Crawshaw, Glaser et al. 2009)	UK/Recruitment through 3 Regional Pediatric and Adolescent Cancer Units in the North of England using purposive sampling	Male & female (n=38) Diagnosed between 13-20 years. Median length of time since diagnosis among teenagers was 3 years, among adults was 7 years.		• Experiences of having fertility and associated decision-making matters raised at diagnosis
A4	(Ginsberg, Ogle et al. 2008)	US/CHOP between 2002 and 2006.	Males, (n=45) 45 At least Tanner Stage III, who were approached to sperm bank	Questionnaires	• Understanding of the impact of therapy on future fertility. • The timing and approach of the clinical staff. • The beliefs that influenced the decision process. • The extent of parental involvement in the final decision. • Impact of delaying treatment in order to sperm bank • Actual experience of specimen collection	Keeping Options Open Future Quality of Life & Milestone Achievement Sensitive Topic Vulnerable Time Control of Information & Decision Making
A5	(Gorman, Bailey et al. 2012)	US/Recruitment from Moores Cancer Center at the University of California San Diego, Rady Children’s Hospital San Diego, and community-based recruitment methods.	Female, (n=22) Diagnosed with cancer between 0-35. Mean age at diagnosis 16.8 yrs., at study 26.1 yrs.	Focus Groups	• Knowledge about the relationship between fertility and cancer treatment • Access to information and care, including fertility preservation options • Feelings toward fertility, pregnancy, and parenthood	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Sensitive Topic Vulnerable Time Constrained by Options Discrepancy between Desired & Actual Experiences
A6	(Yeomanson, Morgan et al. 2013)	UK/Teenage Cancer Trust Conference “Finding your sense of tumour”	Males & Females (N=150 in 2004, 140 in 2011). Current and former patients. Median age M 18, F 17 in 2004, M 18, F 19 in 2011.	Questionnaires	• Was there a fertility discussion? What was the Timing? • Were you given the option to bank sperm/freeze eggs?	Sensitive Topic Vulnerable Time Control of Information & Decision Making Discrepancy between Desired & Actual Experiences
Adolescents & Parents
A7	(Burns, Boudreau et al. 2006)	US/Oncology Clinic at Children’s Hospital of Wisconsin. Convenience sample.	Females & Parent, (n=39 parent/adolescent pairs, 3 parent-only responses, and 8 adolescent-only responses) Diagnosed with cancer between the ages of 10 to 21. Median age 15y, Median months since diagnosis 22 mos.	Cross-sectional survey	• Adolescent has thought about the future. • Someone has talked to them about how their treatment might affect fertility • They have interest in pursuing research-based fertility preservation techniques • They are willing to wait 1 or more months to start therapy.	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Sensitive Topic Control of Information & Decision Making Discrepancy between Desired & Actual Experiences
A8	(Nieman, Kinahan et al. 2007)	US/Recruitment from the Survivors Taking Action & Responsibility (STAR Program) at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL	Female & Parent, (n= 10 adolescents, 10 parents) Diagnosed/treated for cancer between 13-21yrs.	Focus Groups	• Attitudes about fertility at the time of diagnosis and presently. • Reactions to a proposed clinical research study in ovarian tissue preservation.	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Hope and Comfort Sensitive Topic Vulnerable Time Control of Information & Decision Making Constrained by Options Discrepancy between Desired & Actual Experiences
Parents
A9	(van den Berg, Repping et al. 2007)	Netherlands/Emma Children Hospital AMC, 1995-2003	Parents of male survivors diagnosed from 0-17yrs, (n=117) *Pubertal sample analyzed separately	Questionnaires	• Whether at initial diagnosis information on possible secondary infertility was provided • Parental expectation whether their child would be infertile.	Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Sensitive Topic Discrepancy between Desired & Actual Experiences
A10	(Sadri-Ardekani, Akhondi et al. 2013)	Tehran, Iran/Mahak Institute (tertiary cancer center)	Parents of male survivors diagnosed between (n =365) still. Mean age at dx 13 yrs., *Pubertal sample analyzed separately	Survey	• Fertility knowledge. • Opinion on Fertility Preservation options, given risk of infertility, and chance of success.	Keeping Options Open Sensitive Topic Vulnerable Time Discrepancy between Desired & Actual Experiences
Parents & Providers
A11	(de Vries, Bresters et al. 2009)	Netherlands/Data was collected as part of a larger qualitative multi-centre project	Parents (n = 15) of male adolescents (aged 8–18 years) undergoing cancer treatment at the paediatric oncology units and physicians (n=14)	Semi-structured interviews	The perceived role of parents in decision making regarding cancer therapy and related treatments, like fertility preservation options. • The physician–patient–parent relationship, especially concerning decisions regarding therapy and related treatments, like fertility preservation options.	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Sensitive Topic Vulnerable Time Control of Information & Decision Making Discrepancy between Desired & Actual Experiences
Providers
A3c *linked (Craw2009, Craw2004)	(Crawshaw, Glaser et al. 2004)	UK/2 Regional Pediatric Oncology Centres in the North of England and Referral Centres for Assisted Conception	Health and social work professionals (n=22): 4 doctors, 2 nurses, and 4 scientists from Assisted Conception Units; 6 Doctors, 4 nurses, and 2 social workers from Pediatric Oncology Centres.	Semi-structured interviews	• Common practices, areas of variance and issues experienced by professionals in UK regional paediatric oncology centres and licensed assisted conception centres.	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Hope and Comfort Sensitive Topic Vulnerable Time Control of Information & Decision Making Constrained by Options Discrepancy between Desired & Actual Experiences
A12	(Reebals, Brown et al. 2006)	US/Hospital in Southeastern US, 4 hospital units and clinics	Providers (n =27) RN, NP that provide care to Males age 14-18	Questionnaire	• Attitude about sperm banking, factors that may influence willingness to offer sperm banking,	Keeping Options Open Pregnancy/Parenting Intention Hope and Comfort Provider Variability Provider Knowledge and Practice
A13	(Goodwin, Oosterhuis et al. 2007)	US/Lucile Packard Children’s Hospital	Health Care Providers (n =30) (46% NPs & RN, 53% physicians, fellows)	Survey	• Referral Practices & Difficulties • Beliefs regarding fertility preservation, including: timing, cost, efficacy, training, etc.	Keeping Options Open Sensitive Topic Vulnerable Time Constrained by Options Provider Knowledge and Practice
A14a* linked (Vad 2007, Clayton 2008)	(Vadaparampil, Clayton et al. 2007)	US/FL Assoc of Ped Tumor Programs Conference 2005	Nurses (n=103) RN, AP	Survey	• Knowledge of Fertility Preservation • Provider attitudes toward patient factors that may affect the discussion of Fertility Preservation	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Pregnancy/Parenting Intention Provider Variability Provider Knowledge and Practice
A14b* linked (Vad 2007, Clayton 2008)	(Clayton, Quinn et al. 2008)	US/FL Assoc of Ped Tumor Programs Conference 2016	Nurses (n =95) RN, AP
A15	(Anderson, Weddell et al. 2008)	UK/recruited 2003-2004, new dx of cancer registered at Children’s Cancer and Leukaemia Group centre. (22 centres in UK, 17 participated)	1030 patient forms (68% at participating centres), 15% pubertal, 9% post-pubertal	Prospective Observational: oncologists assessed fertility risk, indicate whether FP was discussed	• Have fertility preservation techniques been discussed? If yes, at whose instigation. If no, why? • What fertility preservation techniques were discussed? Check lists for male and female including ‘not specified’ • Whether the patient was referred to a fertility centre	Keeping Options Open Hope and Comfort Sensitive Topic Constrained by Options Provider Variability Provider Knowledge and Practice
A16a*linked (V2008, Q2009, Q(2)2009)	(Vadaparampil, Quinn et al. 2008)	US/Recruitment from 13/15 children’s cancer centers in Florida	Pediatric oncologists (n=24)	Semi-structured, in-depth interviews	• What does fertility preservation mean to you? • What procedures are you aware of? • Do you typically refer FP patients for consults or services? • What priority level do you think FP discussions are to your patients (high, med, low)?	Keeping Options Open Pregnancy/Parenting Intention Sensitive Topic Vulnerable Time Control of Information & Decision Making Constrained by Options Provider Variability Provider Knowledge and Practice
A16b*linked (V2008, Q2009, Q(2)2009)	(Quinn and Vadaparampil 2009)	US/subset of data from a larger study examining the knowledge, attitudes, and behaviors of pediatric oncologists
A16c*linked (V2008, Q2009, Q(2)2009)	(Quinn, Vadaparampil et al. 2009)	US/Recruitment from 13/15 children’s cancer centers in Florida	Pediatric Oncologists (n =26)
A17	(Kohler, Kondapalli et al. 2011)	US/National Pediatric Oncology subspecialty group via the group’s list serv	Providers (n=180), 167 (93%) oncologist, 5 (3%) NP, 2 (1%) reprod endo, 6 (3%) no/other	Survey	• Fertility preservation attitudes and practice patterns for both pre-pubertal (1–12 years of age) and pubertal (13–18 years of age) cancer patients, stratified for males and females. • Knowledge of specific fertility preservation methods, their familiarity with ASCOR, and their practice patterns with regard to fertility preservation	Keeping Options Open Future Quality of Life & Milestone Achievement Fertility Becomes More Important Over Time Sensitive Topic Vulnerable Time Constrained by Options Provider Knowledge and Practice