Georgina Jones1, Jane Hughes1, Neda Mahmoodi1, Emily Smith2, Jonathan Skull3, William Ledger4. 1. Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds LS1 3HE, UK. 2. Medical School, University of Sheffield, Beech Hill Road, Sheffield S10 2RX, UK. 3. Jessop Wing, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield S10 2JF, UK. 4. University of New South Wales, Sydney NSW 2052, Australia.
Abstract
BACKGROUND: Although fertility preservation (FP) treatment options have increased, the existing evidence suggests that many women with cancer do not feel well supported in making these decisions, but find them stressful and complex and fail to take up fertility care at this crucial time. Whilst existing reviews have all made important contributions to our understanding of the FP decision-making process, none of them examine solely and specifically these processes for women of reproductive age with a diagnosis of any cancer, leaving a gap in the knowledge base. Given the expectation that care is patient-centred, our review aims to address this gap which may be of help to those managing patients struggling to make difficult decisions in the often brief period before potentially sterilizing cancer treatment is started. OBJECTIVE AND RATIONALE: Underpinning this narrative review was the question 'What factors hinder the decision-making process for women with any cancer and contemplating FP treatment?' Our objectives were to (i) assess and summarize this existing literature, (ii) identify the factors that hinder this decision-making process, (iii) explore to what extent these factors may differ for women choosing different methods of FP and (iv) make recommendations for service delivery and future research. SEARCH METHODS: A systematic search of the medical and social science literature from the 1 January 2005 up to the end of January 2016 was carried out using three electronic databases (Web of Science (PubMed), Ovid SP Medline and CINAHL via Ebsco). Included in the review were quantitative, qualitative and mixed-method studies. Reference lists of relevant papers were also hand searched. From the 983 papers identified, 46 papers were included. Quality assessment was undertaken using the Mixed Methods Appraisal Tool and thematic analysis was used to analyse the data. OUTCOMES: From the analysis, 6 key themes with 15 sub-themes emerged: (i) fertility information provision (lack of information, timing of the information, patient-provider communication); (ii) fear concerning the perceived risks associated with pursuing FP (delaying cancer treatment, aggravating a hormone positive cancer and consequences of a future pregnancy); (iii) non-referral from oncology (personal situation, having a hormone positive cancer, FP not a priority and transition between service issues); (iv) the dilemma (in survival mode, whether to prioritize one treatment over another); (v) personal situation (parity, relationship status) and (iv) costs (financial concerns). WIDER IMPLICATIONS: This review has found that a wide range of internal and external factors impact the FP decision-making process. Key external issues related to current service delivery such as the provision and timing of FP information, and lack of referral from oncology to the fertility clinic. However, internal issues such as women's fears concerning the perceived risks associated with pursuing FP also hindered decision-making but these 'risks' were typically overestimated and non-evidence based. These findings suggest that the implementation of a range of decision support interventions may be of benefit within the clinical care pathway of FP and cancer. Women would benefit from the provision of more evidence-based FP information, ideally received at cancer diagnosis, in advance of seeing a fertility specialist, for example through the implementation of patient decision aids. Healthcare professionals in both oncology and fertility services may also benefit from the implementation of training programmes and educational tools targeted at improving the communication skills needed to improve collaborative decision-making and deliver care that is patient-centred. Exploration of the current barriers, both intellectual and practical, that prevent some patients from accepting FP will help care providers to do better for their patients in the future. Finally, the extent to which a poorer prognosis and moral, ethical and religious beliefs influence the FP decision-making process also warrant further research.
BACKGROUND: Although fertility preservation (FP) treatment options have increased, the existing evidence suggests that many women with cancer do not feel well supported in making these decisions, but find them stressful and complex and fail to take up fertility care at this crucial time. Whilst existing reviews have all made important contributions to our understanding of the FP decision-making process, none of them examine solely and specifically these processes for women of reproductive age with a diagnosis of any cancer, leaving a gap in the knowledge base. Given the expectation that care is patient-centred, our review aims to address this gap which may be of help to those managing patients struggling to make difficult decisions in the often brief period before potentially sterilizing cancer treatment is started. OBJECTIVE AND RATIONALE: Underpinning this narrative review was the question 'What factors hinder the decision-making process for women with any cancer and contemplating FP treatment?' Our objectives were to (i) assess and summarize this existing literature, (ii) identify the factors that hinder this decision-making process, (iii) explore to what extent these factors may differ for women choosing different methods of FP and (iv) make recommendations for service delivery and future research. SEARCH METHODS: A systematic search of the medical and social science literature from the 1 January 2005 up to the end of January 2016 was carried out using three electronic databases (Web of Science (PubMed), Ovid SP Medline and CINAHL via Ebsco). Included in the review were quantitative, qualitative and mixed-method studies. Reference lists of relevant papers were also hand searched. From the 983 papers identified, 46 papers were included. Quality assessment was undertaken using the Mixed Methods Appraisal Tool and thematic analysis was used to analyse the data. OUTCOMES: From the analysis, 6 key themes with 15 sub-themes emerged: (i) fertility information provision (lack of information, timing of the information, patient-provider communication); (ii) fear concerning the perceived risks associated with pursuing FP (delaying cancer treatment, aggravating a hormone positive cancer and consequences of a future pregnancy); (iii) non-referral from oncology (personal situation, having a hormone positive cancer, FP not a priority and transition between service issues); (iv) the dilemma (in survival mode, whether to prioritize one treatment over another); (v) personal situation (parity, relationship status) and (iv) costs (financial concerns). WIDER IMPLICATIONS: This review has found that a wide range of internal and external factors impact the FP decision-making process. Key external issues related to current service delivery such as the provision and timing of FP information, and lack of referral from oncology to the fertility clinic. However, internal issues such as women's fears concerning the perceived risks associated with pursuing FP also hindered decision-making but these 'risks' were typically overestimated and non-evidence based. These findings suggest that the implementation of a range of decision support interventions may be of benefit within the clinical care pathway of FP and cancer. Women would benefit from the provision of more evidence-based FP information, ideally received at cancer diagnosis, in advance of seeing a fertility specialist, for example through the implementation of patient decision aids. Healthcare professionals in both oncology and fertility services may also benefit from the implementation of training programmes and educational tools targeted at improving the communication skills needed to improve collaborative decision-making and deliver care that is patient-centred. Exploration of the current barriers, both intellectual and practical, that prevent some patients from accepting FP will help care providers to do better for their patients in the future. Finally, the extent to which a poorer prognosis and moral, ethical and religious beliefs influence the FP decision-making process also warrant further research.
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