Understanding Reproductive Health among Survivors of Paediatric and Young adults (URHSPY) cancers in Uganda: A mixed method study protocol

Background Although reproductive failure after cancer treatment in children and young adults has been extensively described in high-income countries, there is a paucity of data in low-income settings. In addition, patient, parent, or health worker experiences, perspectives, and attitudes toward the risk of reproductive failure among young cancer patients in these settings are unknown. This study will describe the extent of reproductive morbidity associated with cancer treatment among childhood and young adult cancer survivors in Uganda. In addition, we aim to explore the contextual enablers and barriers to addressing cancer treatment-related reproductive morbidity in Uganda. Methods This is an explanatory sequential mixed-method study. The quantitative phase will be a survey among childhood and young adult cancer survivors recruited from the Kampala Cancer Registry (KCR). The survey will utilize a Computer Assisted Telephone Interview (CATI) platform on a minimum of 362 survivors. The survey will obtain information on self-reported reproductive morbidity and access to oncofertility care. The qualitative phase will use grounded theory to explore contextual barriers and enablers to addressing reproductive morbidity associated with cancer treatment. The quantitative and qualitative phases will be integrated at the intermediate and results stage. Conclusion Results from this study will inform the development of policy, guidelines, and programs supporting reproductive health among childhood and young adult cancer survivors.

[1]  D. Parkin,et al.  Trends in the incidence of cancer in Kampala, Uganda, 1991 to 2015 , 2020, International journal of cancer.

[2]  J. Aitken,et al.  Survival from childhood cancer in Kampala, Uganda , 2020, Pediatric blood & cancer.

[3]  Laura V Minard,et al.  Exploring the perspectives of healthcare professionals in delivering optimal oncology medication education , 2020, PloS one.

[4]  E. Kennedy,et al.  Clinicians’ Perspectives on Barriers to Discussing Infertility and Fertility Preservation With Young Women With Cancer , 2019, JAMA network open.

[5]  A. Hyder,et al.  Does mobile phone survey method matter? Reliability of computer-assisted telephone interviews and interactive voice response non-communicable diseases risk factor surveys in low and middle income countries , 2019, PloS one.

[6]  M. Ariel Cascio,et al.  A Team-based Approach to Open Coding: Considerations for Creating Intercoder Consensus , 2019, Field Methods.

[7]  Elena Higley,et al.  Defining Young Adulthood , 2019 .

[8]  C. Fischbacher,et al.  The impact of cancer on subsequent chance of pregnancy: a population-based analysis , 2018, Human reproduction.

[9]  F. Martínez Update on fertility preservation from the Barcelona International Society for Fertility Preservation-ESHRE-ASRM 2015 expert meeting: indications, results and future perspectives. , 2017, Fertility and sterility.

[10]  Abigail R Greenleaf,et al.  Building the Evidence Base for Remote Data Collection in Low- and Middle-Income Countries: Comparing Reliability and Accuracy Across Survey Modalities , 2017, Journal of medical Internet research.

[11]  Young Adult Health and Well-Being: A Position Statement of the Society for Adolescent Health and Medicine. , 2017, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[12]  G. Bedoschi,et al.  Chemotherapy-induced damage to ovary: mechanisms and clinical impact. , 2016, Future oncology.

[13]  Kayla L. Stratton,et al.  Pregnancy after chemotherapy in male and female survivors of childhood cancer treated between 1970 and 1999: a report from the Childhood Cancer Survivor Study cohort. , 2016, The Lancet. Oncology.

[14]  R. Robinson,et al.  Fertility Preservation Counseling for Pediatric and Adolescent Cancer Patients. , 2016, Journal of adolescent and young adult oncology.

[15]  S. Temin,et al.  Systemic Therapy for Stage IV Non-Small-Cell Lung Cancer: American Society of Clinical Oncology Clinical Practice Guideline Update. , 2016, Journal of oncology practice / American Society of Clinical Oncology.

[16]  Clare Stroud,et al.  Investing in the health and well-being of young adults. , 2015, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[17]  Konny H. Kim,et al.  Piloting a computer assisted telephone interview: the FUCHSIA Women’s Study , 2014, BMC Women's Health.

[18]  Michael D Fetters,et al.  Achieving integration in mixed methods designs-principles and practices. , 2013, Health services research.

[19]  N. Pavlidis,et al.  Cancer, pregnancy and fertility: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. , 2013, Annals of oncology : official journal of the European Society for Medical Oncology.

[20]  K. Oktay,et al.  Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. , 2013, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[21]  Tamoghna Biswas,et al.  How to Calculate Sample Size for Different Study Designs in Medical Research? , 2013, Indian journal of psychological medicine.

[22]  Z. Rosenwaks,et al.  Recommendations for fertility preservation in patients with lymphoma, leukemia, and breast cancer , 2012, Journal of Assisted Reproduction and Genetics.

[23]  Debra Jackson,et al.  Interviewing people about potentially sensitive topics. , 2011, Nurse researcher.

[24]  E. Thomas,et al.  Qualitative rigor or research validity in qualitative research. , 2011, Journal for specialists in pediatric nursing : JSPN.

[25]  Hsiao-Yu Chen,et al.  Using a synthesised technique for grounded theory in nursing research. , 2009, Journal of clinical nursing.

[26]  P. Harris,et al.  Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support , 2009, J. Biomed. Informatics.

[27]  E. Carr Understanding inadequate pain management in the clinical setting: the value of the sequential explanatory mixed method study. , 2009, Journal of clinical nursing.

[28]  Lorelei Lingard,et al.  Grounded theory, mixed methods, and action research , 2008, BMJ : British Medical Journal.

[29]  J. Creswell,et al.  Using Mixed-Methods Sequential Explanatory Design: From Theory to Practice , 2006 .

[30]  G. Ruvolo,et al.  Ovarian function following radiation and chemotherapy for cancer. , 2004, European journal of obstetrics, gynecology, and reproductive biology.

[31]  Y. Eaves,et al.  A synthesis technique for grounded theory data analysis. , 2001, Journal of advanced nursing.

[32]  C. Brodsky The Discovery of Grounded Theory: Strategies for Qualitative Research , 1968 .