Future Fertility Among Pediatric Cancer Patients: Experiences and Perspectives of Health Workers in a Low-Resource Setting.

Purpose:Although fertility preservation for patients with childhood and adolescent cancer is considered standard of care in the high-resource settings, it is rarely offered in low-resource settings. This study explores the experiences and perspectives of oncology health care professionals in Uganda to identify contextual barriers and facilitators to addressing oncofertility in low-resource settings. Methods: Using ground theory, we conducted in-depth face-to-face interviews of health care professionals managing pediatric patients at the Uganda Cancer Institute (UCI). Using a systematic, semi-structured interview guide, participants were asked open-ended questions about their understanding of fertility preservation and their perspectives on implementing this care at their institution. Although all the eligible health care providers were interviewed, interview transcripts were uploaded into NVivo version 12 and openly coded as per theoretical requirements. Codes were refined into categories and later into structured themes. Results: Twelve health care professionals were interviewed. Most participants identified as female (n = 9). Their role in the medical team varied from nurses (n = 6), medical officers (n = 3), pediatric oncologists (n = 2), and pediatric oncology fellow (n = 1). Six themes were noted as follows: (1) importance of information, (2) importance of future fertility, (3) inadequate consideration to future fertility, (4) communication barriers, (5) inadequate knowledge, and (6) resource barriers. Conclusion: Although health care providers at the UCI face contextual barriers to addressing future fertility among patients with pediatric cancer, they value preserving fertility in this population. Future initiatives that aim to introduce oncofertility care in low-resource settings should prioritize educating providers and building capacity to meet the oncofertility needs in this setting.

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.

Shared Decision-Making About Future Fertility in Childhood Cancer Survivorship: Perspectives of Parents in Uganda.

Background: Despite a plethora of literature on barriers to addressing future fertility in childhood cancer survivors, the data are not representative of limited middle-income settings. Unique and context-specific factors may influence addressing future fertility care among childhood cancer survivors in Uganda. This study aimed to explore the experiences, attitudes, and perceptions of parents on their interactions with health providers about future fertility, as part of their child's cancer survivorship. Methods: Using grounded theory, semistructured interviews were conducted with parents of children diagnosed with cancer, <18 years of age, and not in the induction or consolidation phases of treatment. Transcripts were thematically analyzed. Results: A total of 20 participants were interviewed, with the majority identifying as female (n = 18). The global theme that arose was the importance of shared decision-making, and the key themes encompassing this were as follows: (1) importance of accurate information, (2) respect of autonomy, and (3) engagement and psychosocial support. Conclusion: In Uganda, parents of children with cancer value a multifaceted approach to satisfactory decision-making within the context of oncofertility.

Understanding Fertility Attitudes and Outcomes Among Survivors of Adolescent and Young Adult Cancers in a Low-Resource Setting: A Registry-Based Computer-Assisted Telephone Interview Survey.

Purpose: To establish the extent of self-reported reproductive failure associated with cancer treatment, and attitudes toward fertility among adolescent and young adult (AYA) cancer survivors in Uganda. Methods: A registry-based computer-assisted telephone interview survey was conducted in Uganda. The survey population were survivors of childhood, adolescent and early adulthood cancers diagnosed between 2007 and 2018. The survey explored fertility outcomes, experiences of oncofertility and fertility attitudes of AYA cancer survivors. Results: Thirty-four (female = 14 and male = 20) interviews were completed. Survivors were 18-35 years of age. The median age at cancer diagnosis was 23.5 for females and 17.5 for males. Kaposi's sarcoma contributed to 44% of primary cancer diagnoses. All the survivors had received chemotherapy alone or in combination with other modalities and 79% of survivors had not received satisfactory information about future fertility before cancer treatment. Twenty one percent of males and 46% females met the criteria for infertility and 60% of these had met this criterion after their cancer diagnosis. Eighty two percent wanted to raise a biologically related child. Forty seven percent would be dissatisfied with their lives if they were unable to have a child or additional children. Conclusion: AYA cancer survivors in this low-resource setting reported reproductive failure, despite a strong fertility desire. Information and counseling provided on therapy-related problems before cancer treatment was insufficient and reinforces the need to build capacity for oncofertility resources within the region.

Predictors of laboratory spontaneous tumour lysis syndrome in children with high-grade tumours in Uganda.

High-grade malignancy is endemic in sub-Saharan Africa and is prone to the spontaneous tumour lysis syndrome. However, data on spontaneous tumour lysis syndrome remain scanty in our setting. We sought to determine the prevalence and factors associated with laboratory spontaneous tumour lysis syndrome in children in Uganda. We conducted a cross-sectional study among children <18 years old with histologically confirmed high-grade malignancy between October 2013 and April 2014. Laboratory spontaneous tumour lysis syndrome was defined as the presence of ≥2 of each of hyperkalaemia, hypocalcaemia, hyperuricaemia and hyperphosphatemia prior to administration of chemotherapy when alternative diagnoses had been excluded. A p < 0.05 was considered statistically significant. Of 108 children, of median age 7.7 years, where boys outnumbered girls 2:1, high-grade, malignancy included Burkitt's lymphoma, acute lymphoblastic leukaemia, non-Hodgkin's lymphoma, acute myeloid leukaemia and Burkitt's leukaemia, with 14 suffering with laboratory spontaneous tumour lysis syndrome. Hypocalcaemia was its most common electrolyte imbalance; and four children died prior to commencement of chemotherapy. Bulky disease, lactate dehydrogenase levels ≥500 iu/l and serum creatinine levels >1.2 mg/dl were associated with laboratory spontaneous tumour lysis syndrome. However, only bulky disease was significantly predictive of laboratory spontaneous tumour lysis syndrome. Such children would benefit from routine screening.