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      How can we improve oncofertility care for patients? A systematic scoping review of current international practice and models of care

      review-article
      1 , 2 , 3 , 1 , 3 , 4 , 5 , 5 , 1 , 2 , 6 , 1 , 3 , 7 , 8 , 9 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 18 , 16 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 16 , 26 , 27 , 28 , 3 , 4 , 29
      Human Reproduction Update
      Oxford University Press
      fertility preservation, oncofertility, survivorship, models of care, late effects, systematic review, communication, training

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          Abstract

          BACKGROUND

          Fertility preservation (FP) is an important quality of life issue for cancer survivors of reproductive age. Despite the existence of broad international guidelines, the delivery of oncofertility care, particularly amongst paediatric, adolescent and young adult patients, remains a challenge for healthcare professionals (HCPs). The quality of oncofertility care is variable and the uptake and utilization of FP remains low. Available guidelines fall short in providing adequate detail on how oncofertility models of care (MOC) allow for the real-world application of guidelines by HCPs.

          OBJECTIVE AND RATIONALE

          The aim of this study was to systematically review the literature on the components of oncofertility care as defined by patient and clinician representatives, and identify the barriers, facilitators and challenges, so as to improve the implementation of oncofertility services.

          SEARCH METHODS

          A systematic scoping review was conducted on oncofertility MOC literature published in English between 2007 and 2016, relating to 10 domains of care identified through consumer research: communication, oncofertility decision aids, age-appropriate care, referral pathways, documentation, training, supportive care during treatment, reproductive care after cancer treatment, psychosocial support and ethical practice of oncofertility care. A wide range of electronic databases (CINAHL, Embase, PsycINFO, PubMed, AEIPT, Education Research Complete, ProQuest and VOCED) were searched in order to synthesize the evidence around delivery of oncofertility care. Related citations and reference lists were searched. The review was undertaken following registration (International prospective register of systematic reviews (PROSPERO) registration number CRD42017055837) and guidelines of Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).

          OUTCOMES

          A total of 846 potentially relevant studies were identified after the removal of duplicates. All titles and abstracts were screened by a single reviewer and the final 147 papers were screened by two reviewers. Ten papers on established MOC were identified amongst the included papers. Data were extracted from each paper and quality scores were then summarized in the oncofertility MOC summary matrix. The results identified a number of themes for improving MOC in each domain, which included: the importance of patients receiving communication that is of a higher quality and in different formats on their fertility risk and FP options; improving provision of oncofertility care in a timely manner; improving access to age-appropriate care; defining the role and scope of practice of all HCPs; and improving communication between different HCPs. Different forms of decision aids were found useful for assisting patients to understand FP options and weigh up choices.

          WIDER IMPLICATIONS

          This analysis identifies core components for delivery of oncofertility MOC. The provision of oncofertility services requires planning to ensure services have safe and reliable referral pathways and that they are age-appropriate and include medical and psychological oncofertility care into the survivorship period. In order for this to happen, collaboration needs to occur between clinicians, allied HCPs and executives within paediatric and adult hospitals, as well as fertility clinics across both public and private services. Training of both cancer and non-cancer HCPs is needed to improve the knowledge of HCPs, the quality of care provided and the confidence of HCPs with these consultations.

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          Most cited references144

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          Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer.

          The post-treatment quality of life (QOL) impacts of receiving precancer-treatment infertility counseling and of pursuing fertility preservation have not been described in large-scale studies of reproductive age women with cancer. In total, 1041 women who were diagnosed between ages 18 and 40 years responded to a retrospective survey and reported whether they received infertility counseling before cancer treatment and whether they took action to preserve fertility. Five cancer types were included: leukemia, Hodgkin disease, non-Hodgkin lymphoma, breast cancer, and gastrointestinal cancer. Validated QOL scales were used: the Decision Regret Score, the Satisfaction with Life Scale (SWLS), and the brief World Health Organization QOL questionnaire. Overall, 560 women (61%) who received treatment that potentially could affect fertility were counseled by the oncology team, 45 (5%) were counseled by fertility specialists, and 36 (4%) took action to preserve fertility. Pretreatment infertility counseling by a fertility specialist and an oncologist resulted in lower regret than counseling by an oncologist alone (8.4 vs 11.0; P < .0001). The addition of fertility preservation (6.6 vs 11.0; P < .0001) also was associated with even lower regret scores than counseling by an oncologist alone. Further improvements also were observed in SWLS scores with the addition of fertility specialist counseling (23.0 vs 19.8; P = .09) or preserving fertility (24.0 vs 19.0; P = .05). Receiving specialized counseling about reproductive loss and pursuing fertility preservation is associated with less regret and greater QOL for survivors, yet few patients are exposed to this potential benefit. Women of reproductive age should have expert counseling and should be given the opportunity to make active decisions about preserving fertility. Copyright © 2011 American Cancer Society.
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            Physician referral for fertility preservation in oncology patients: a national study of practice behaviors.

            Cancer survival rates are improving, and the focus is moving toward quality survival. Fertility is a key aspect of quality of life for cancer patients of childbearing age. Although cancer treatment may impair fertility, some patients may benefit from referral to a specialist before treatment. However, the majority of studies examining patient recall of discussion and referral for fertility preservation (FP) show that less than half receive this information. This study examined the referral practices of oncologists in the United States. This study examined oncologists' referral practice patterns for FP among US physicians using the American Medical Association Physician Masterfile database. A 53-item survey was administered via mail and Internet to a stratified random sample of US physicians. Forty-seven percent of respondents routinely refer cancer patients of childbearing age to a reproductive endocrinologist. Referrals were more likely among female physicians (P = .004), those with favorable attitudes (P = .043), and those whose patients routinely ask about FP (odds ratio = 2.09; 95% CI, 1.31 to 3.33). Less than half of US physicians are following the guidelines from the American Society of Clinical Oncology, which suggest that all patients of childbearing age should be informed about FP.
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              Book: Crossing the Quality Chasm: A New Health System for the 21st Century

              A. Baker (2001)
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                Author and article information

                Journal
                Hum Reprod Update
                Hum. Reprod. Update
                humupd
                Human Reproduction Update
                Oxford University Press
                1355-4786
                1460-2369
                March 2019
                20 November 2018
                20 November 2018
                : 25
                : 2
                : 159-179
                Affiliations
                [1 ]Kids Cancer Centre, Sydney Children’s Hospital, High Street Randwick, Randwick, Sydney, NSW, Australia
                [2 ]Nelune Cancer Centre, Prince of Wales Hospital, Barker Street, Randwick, Sydney, NSW, Australia
                [3 ]School of Women’s and Children’s Health, University of New South Wales, Botany Street, Sydney, NSW, Australia
                [4 ]Fertility and Research Centre, Royal Hospital for Women, Barker Street, Randwick, Sydney, NSW, Australia
                [5 ]Centre for Health Services Management, Faculty of Health, University of Technology Sydney, 15 Broadway, Ultimo, Sydney, NSW, Australia
                [6 ]Institute of Health and Biomedical Innovation, Queensland University of Technology, GPO Box 2434, Brisbane, Queensland, Australia
                [7 ]Fertility Associates, 7 Ellerslie Racecourse Drive, Auckland City, New Zealand
                [8 ]Department of Pediatrics, McMaster University, 1280 Main Street West, Hamilton, Ontario, Canada
                [9 ]St. Marianna University School of Medicine, 2-16-1 Sugao, Kawasaki Kanagawa Prefecture, Japan
                [10 ]Pro Criar Medicina Reprodutiva, Rua Bernardo Guimarães 2063, Belo Horizonte, Brazil
                [11 ]Reproductive Health and Toxicology Lab, Dept. Environmental Health Sciences, Arnold School of Public Health, University of South Carolina, Discovery I, 915 Greene St, Rm 327, Columbia, SC, USA
                [12 ]Obstetrics and Gynecology Department, First Affiliated Hospital of Xiamen University, 55 Zhenhai Road, Siming Qu, Xiamen Shi 35, China
                [13 ]Mother and Child Hospital, D-59 Defence Colony, New Delhi, India
                [14 ]Dr. Patil’s Fertility and Endoscopy Center, Center for Assisted Reproductive Technology, Endoscopic Surgery and Andrology, Bangalore, India
                [15 ]Gunasheela Surgical & Maternity Hospital, No. 1, Dewan Madhava Road, Opp. M. N. Krishna Rao Park, Basavanagudi, Bengaluru, Karnataka, India
                [16 ]Department of Obstetrics and Gynecology, Feinberg School of Medicine Northwestern University, 420 E Superior Street, Chicago, IL, USA
                [17 ]Children’s Hospital Orange County, 1201 W La Veta Avenue, Orange, CA, USA
                [18 ]Centro de Preservação da Fertilidade, Serviço de Medicina da Reprodução, Centro Hospitalar e Universitário de Coimbra, Edifício de São Jerónimo, Piso 2, Praceta Professor Mota Pinto, Coimbra, Portugal
                [19 ]Reproductive Medicine Department, National Research Center, Buhouth Street 33, Cairo, Egypt
                [20 ]The Ohio State University College of Medicine, Department of Obstetrics and Gynecology, Columbus, OH, USA
                [21 ]The Ohio State University Comprehensive Cancer Center–James Cancer Hospital and Solove Research Institute, Columbus, OH, USA
                [22 ]Nationwide Children’s Hospital, Department of Paediatric Surgery, 700 Children’s Drive, Columbus, OH, USA
                [23 ]University of California San Diego, 355 Dickinson St # 315, San Diego, CA, USA
                [24 ]Oxford University Hospitals NHS Foundation Trust, Headley Way, Headington, Oxford, UK
                [25 ]University of Oxford, Wellington Square, Oxford, UK
                [26 ]Academic Unit of Reproductive and Developmental Medicine, Department of Oncology and Metabolism, University of Sheffield, Level 4, The Jessop Wing, Tree Root Walk, Sheffield, South Yorkshire, UK
                [27 ]MRC Centre for Reproductive Health, The Queen’s Medical Research Institute, Edinburgh University, 47 Little France Crescent, Scotland, UK
                [28 ]Reproductive Medicine Unit, Elizabeth Garrett Anderson Wing, University College London Hospital, 25 Grafton Way, London, UK
                [29 ]Australian Centre for Public and Population Health Research, Faculty of Health, University of Technology, 15 Broadway, Ultimo, Sydney, NSW, Australia
                Author notes
                Correspondence address. Kids Cancer Centre, Sydney Children’s Hospital, Sydney 2031, Australia. Tel: +61-29-382-1733; E-mail: antoinette.anazodo@ 123456health.nsw.gov.au
                Author information
                http://orcid.org/0000-0002-5495-6062
                Article
                dmy038
                10.1093/humupd/dmy038
                6390168
                30462263
                28aa79bd-40ae-4968-9acf-b1730a6d44bf
                © The Author(s) 2018. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License ( http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@ 123456oup.com

                History
                : 31 May 2018
                : 15 October 2018
                : 24 October 2018
                Page count
                Pages: 21
                Funding
                Funded by: Kids Cancer Alliance
                Funded by: aCINSW Translational Cancer Research Centre
                Funded by: Churchill Foundation
                Funded by: Federal Health Department
                Categories
                Review

                Human biology
                fertility preservation,oncofertility,survivorship,models of care,late effects,systematic review,communication,training

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