Utilizing the Experience of Consumers in Consultation to Develop the Australasian Oncofertility Consortium Charter

Anazodo, Antoinette; Gerstl, Brigitte; Stern, Catharyn; McLachlan, Robert I; Agresta, Franca; Jayasinghe, Yasmin; Cohn, Richard J.; Wakefield, Claire E.; Chapman, Michael; Ledger, William; Sullivan, Elizabeth A.

doi:10.1089/jayao.2015.0056

Cited by 21 publications

(18 citation statements)

References 36 publications

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“…This group was also instrumental in developing the Australasian Oncofertility Consortium Charter [52] which will be used to benchmark change in oncofertility practice overtime. The oncofertility data dictionary has been converted into an online web-based registry, available on any computer with internet connection through the website login page www.futurefertility.com.au by the IT team of Salesforce.com inc who built the AOFR as part of the company's technology innovation philanthropic giving program.…”

Section: Methodsmentioning

confidence: 99%

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A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand

Anazodo

Stern

McLachlan

et al. 2016

Journal of Adolescent and Young Adult Oncology

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Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be considered and protected as much as possible. However, there is a lack of data about current fertility preservation (FP) uptake as well as accurate data on the acute or permanent reproductive risks of cancer treatment, complications of FP in cancer patients, and the use and success of assisted reproductive technology by cancer survivors. FP remains a major gap in acute cancer management with lifelong implications for cancer survivors. The FUTuRE Fertility research team has established the first binational multisite Australasian Oncofertility Registry, which is collecting a complete oncofertility data set from cancer and fertility centers in Australia and New Zealand. Outcomes from the research study will monitor referral, uptake, and complications of FP, document patient's reproductive potential after treatment, and collect data on the use of assisted reproductive technology following cancer treatment. The data will be linked to other routine health and administrative data sets to allow for other research projects to be carried out. The changes in oncofertility care will be benchmarked against the Australasian Oncofertility Charter. The data will be used to develop evidence-based guidelines and resources, including development of accurate risk projections for patients' risk of infertility, allowing clinicians to make recommendations for FP or assisted reproductive technology. Australian New Zealand Clinical Trials Number-12615000221550.

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Section: Methodsmentioning

confidence: 99%

“…Accurate and comprehensive national reporting of oncofertility management can inform future best practice and be benchmarked against the Australasian Oncofertility Consortium Charter, [52] as well as improving allocation of oncofertility resources and research.…”

Section: Hypothesismentioning

confidence: 99%

A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand

Anazodo

Stern

McLachlan

et al. 2016

Journal of Adolescent and Young Adult Oncology

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“…These recommendations are in keeping with other international guidelines including those from Europe and North America . Additionally, the Australasian Oncofertility Consortium Charter established eight recommendations for holistic care for oncofertility patients …”

Section: Resultsmentioning

confidence: 61%

“…13,27 Additionally, the Australasian Oncofertility Consortium Charter established eight recommendations for holistic care for oncofertility patients. 45 The Australian government has established the National…”

Section: Access In Australiamentioning

confidence: 99%

Fertility preservation in oncology patients: A literature review examining current fertility preservation techniques and access to oncofertility services in Australia

Robson

Phua

Howard

et al. 2019

Aust NZ J Obst Gynaeco

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Background In Australia, between the years 2010 and 2014, over 4500 adolescents and young adults (15–25 years old) were diagnosed with cancer. Treatment regimens are often gonadotoxic and are well known to induce ovarian and testicular failure. Oncofertility is an emerging discipline in obstetrics and gynaecology which seeks to preserve and restore the reproductive future of cancer patients. Aim To perform a systematic literature review to assess the current fertility preservation techniques available to patients and examine access and uptake of fertility preservation in Australia. Materials and Methods Electronic databases, including Medline, Cochrane Review, SCOPUS and CINHAL, were searched for peer‐reviewed publications and national guidelines examining oncofertility practices from 2008 to July 2018. Three hundred and seventy‐five articles were initially screened, with 158 articles for full text review and an additional five clinical guidelines were identified. Results There is a paucity of Australian data on oncofertility with <50% of data included for analysis reflecting the Australian experience. The majority of primary research included retrospective papers with small cohort numbers. Key areas addressed included live birth outcomes, uptake of services and patient and physician perspectives on fertility preservation. Few articles sought to examine the positive and negative side effects of fertility preservation in oncology, social challenges of oncofertility and access to services worldwide. Conclusion Oncofertility is an emerging discipline which seeks to provide safe, efficient and effective fertility preservation options for young adults and adolescents diagnosed with cancer. A multi‐disciplinary approach with collaborative communication with oncologists is key to providing this service within Australia.

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“…This study has a strong foundation, building on previous patient advocacy work and comprehensive oncofertility literature reviews , ensuring the competency statements were evidence based. The PFA engagement and participation in this study strengthened the development and review of the Delphi questionnaires, giving equal weight to HCP and PFA responses and ensuring that the outcomes are patient focused.…”

Section: Discussionmentioning

confidence: 99%

The Development of an International Oncofertility Competency Framework: A Model to Increase Oncofertility Implementation

et al. 2019

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Background. Despite international evidence about fertility preservation (FP), several barriers still prevent the implementation of equitable FP practice. Currently, oncofertility competencies do not exist. The aim of this study was to develop an oncofertility competency framework that defines the key components of oncofertility care, develops a model for prioritizing service development, and defines the roles that health care professionals (HCPs) play. Materials and Method. A quantitative modified Delphi methodology was used to conduct two rounds of an electronic survey, querying and synthesizing opinions about statements regarding oncofertility care with HCPs and patient and family advocacy groups (PFAs) from 16 countries (12 high and 4 middle income). Statements included the roles of HCPs and priorities for service development care across ten domains (communication, oncofertility decision aids, age-appropriate care, referral pathways, documentation, oncofertility training, reproductive survivorship care and fertility-related psychosocial support, supportive care, and ethical frameworks) that represent 33 different elements of care.Results. The first questionnaire was completed by 457 participants (332 HCPs and 125 PFAs). One hundred and thirty-eight participants completed the second questionnaire (122 HCPs and 16 PFAs). Consensus was agreed on 108 oncofertility competencies and the roles HCPs should play in oncofertility care. A three-tier service development model is proposed, withThe Oncologist 2019;24:e1450-e1459 www.TheOncologist.com Symptom Management and Supportive Care Implications for Practice: Despite international evidence about fertility preservation (FP), several barriers still prevent the implementation of equitable FP practice. The competency framework gives 108 competencies that will allow health care professionals (HCPs) and services a structure for the development of oncofertility care, as well as define the role HCPs play to provide care and support. The framework also proposes a three-tier oncofertility service development model which prioritizes the development of components of oncofertility care into essential, enhanced, and expert services, giving clear recommendations for service development. The competency framework will enhance the implementation of FP guidelines, improving the equitable access to medical and psychological oncofertility care. Initial QuestionnaireQuestionnaires were developed for HCPs and PFAs. These questionnaires were reviewed by PFA to ensure consensus on appropriate terminology and language and breadth of

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Utilizing the Experience of Consumers in Consultation to Develop the Australasian Oncofertility Consortium Charter

Cited by 21 publications

References 36 publications

A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand

A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand

Fertility preservation in oncology patients: A literature review examining current fertility preservation techniques and access to oncofertility services in Australia

The Development of an International Oncofertility Competency Framework: A Model to Increase Oncofertility Implementation

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