Optimizing health literacy to facilitate reproductive health decision-making in adolescent and young adults with cancer.

Despite being considered "standard of care" by many organizations, fertility and reproductive health communications and counseling practices remain inconsistent for adolescents and young adults (AYAs) newly diagnosed with cancer and during survivorship. One factor known to affect how information is provided and received in the medical setting is health literacy. Providers should consider health literacy to optimize reproductive health communication with AYAs as they cope with their diagnosis, understand what it means for their future, process information about treatment options, learn about their potential harmful effects on fertility, make quick decisions about fertility preservation, and navigate a future family planning course. Thus, the objectives of this manuscript are to (a) summarize literature on reproductive health literacy; (b) describe health literacy frameworks; (c) examine ways to assess health literacy; and (d) identify ways to enhance clinician-patient communication in the AYA oncofertility setting.

Supportive oncofertility care, psychological health and reproductive concerns: a qualitative study.

PURPOSE: Impaired fertility in cancer patients and survivors of reproductive age (15-45 years) may lead to psychological distress and poor mental health outcomes, and may negatively impact quality of life. Limited research has focused on the fertility experiences of those who have had access to supportive oncofertility care. This study aims to explore the fertility-care experiences and reproductive concerns of reproductive age cancer patients at the time of their cancer diagnosis who have had access to oncofertility care. METHODS: The qualitative data from a larger mixed method study is presented, comprising 30 semi-structured telephone interviews with newly diagnosed cancer patients across Australia and New Zealand, undertaken between April 2016 and April 2018. RESULTS: Interviews were undertaken with 9 male patients and 21 female patients aged between 15 and 44 years. All patients recalled a discussion about fertility and majority underwent some form of fertility preservation. Thematic analysis identified five main themes: (i) satisfaction with oncofertility care, (ii) a need for individualised treatment and support, (iii) desire for parenthood, (iv) fertility treatment can be challenging, and (v) fertility preservation provides a safety net for the future. CONCLUSIONS: Participants who access supportive oncofertility care report low emotional impact of threatened future infertility at the time of cancer diagnosis. These results suggest that such services may assist in lowering the emotional burden of potential infertility in survivors. Long-term research is needed to assess the longitudinal benefits for different models of care.

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

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, with gradual implementation of different components of care. A total of 92.8% of the 108 agreed competencies also had agreement between high and middle income participants. CONCLUSION: FP guidelines establish best practice but do not consider the skills and requirements to implement these guidelines. The competency framework gives HCPs and services a structure for the training of HCPs and implementation of care, as well as defining a model for prioritizing oncofertility service development. 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.

The psychological importance of fertility preservation counseling and support for cancer patients.

Infertility associated with cancer can have significant psychological impacts for cancer patients and survivors, necessitating appropriate fertility-related psychological support. This literature review details the psychological impact of infertility in cancer patients and survivors, and discusses fertility counseling as described in current international guidelines; as either the provision of fertility information or psychosocial support. Fertility counseling has a role in assisting with fertility treatment decision-making, but also in supporting patients with the emotional distress associated with potential infertility at the time of cancer diagnosis, and infertility in survivorship. The necessity of psychological support for fertility patients is outlined, alongside recommendations for adolescent and young adult patients, and family members of cancer patients involved in fertility and oncological care. Moving forward, clear guidelines for fertility counseling of cancer patients in the context of fertility preservation may be beneficial, in removing ambiguity as to whom conducts counseling, what counseling involves, and what level of psychosocial support may be most effective in supporting cancer patients longitudinally.

Systematic review of fertility-related psychological distress in cancer patients: Informing on an improved model of care.

OBJECTIVE: Cancer patients experience reproductive concerns from diagnosis through to survivorship. However, research has yet to investigate the degree of fertility-related psychological distress at different treatment time points: diagnosis, treatment, and survivorship. Currently, cancer patients are offered fertility counselling at the time of diagnosis, to assist fertility preservation decision making. A systematic review of the short-term and long-term psychological impact of infertility in cancer patients would inform on an improved, longitudinal model of psychological care. METHODS: A systematic review of the literature was conducted in January 2018 utilising electronic databases Medline, EMBASE, PSYCH Info, Web of Science, and SCOPUS. An initial search identified 708 potentially relevant studies. Literature was assessed that reported on fertility-related psychological distress experienced by male and female cancer patients of reproductive age (<45 years) across oncology treatment time points. RESULTS: A total of 47 papers were included within the final review. Fertility-related psychological distress persists from diagnosis through to survivorship, with cancer patients reporting a range of negative emotional experiences brought about by threatened infertility. In survivorship, reproductive concerns, unfulfilled desire for a child, nulliparous status, and early menopause were linked to higher rates of mental health disorders and psychological distress. CONCLUSIONS: Fertility-related psychological distress is prevalent and persistent in cancer patients and survivors. As such, patients and survivors would greatly benefit from fertility-related psychological support implemented into standard practice from diagnosis through to survivorship. A revised model of care is proposed.

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

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.

Systematic review of fertility preservation patient decision aids for cancer patients.

OBJECTIVE: Despite recommendations internationally for the timely provision of fertility information, cancer patients report unmet information needs, with poor provision and inadequate written information to assist in fertility preservation decision-making. Patient decision aids (PtDAs) may be a useful resource in this setting to inform patients and guide decision-making. A systematic review of the literature on decision aids for fertility preservation in cancer patients would determine the effectiveness of these tools in supporting decision-making about fertility preservation and indicate their current use in clinical care. METHODS: A systematic review was conducted in March 2018, within electronic search databases Medline, EMBASE, PSYCH Info, PubMed, and Web of Science. An initial search identified 718 potentially relevant articles from databases and screening of relevant reference lists. RESULTS: A total of 12 papers, detailing 11 studies with a total of 772 participants, evaluating nine decision aids, were included within the review. PtDAs were shown to significantly increase fertility preservation knowledge and decrease decisional conflict. Overall satisfaction with decision aids was high. Currently, only two reviewed decision aids are available for cancer patients. Another tool has been integrated into a web page, and one implementation study has been completed. CONCLUSIONS: PtDAs can serve as effective complements to current fertility counselling practices by increasing information satisfaction and decision-making outcomes. More research is needed into the appropriateness of these resources for patients across the reproductive age range. Future implementation studies may assist in aiding dissemination of these tools into clinical practice.

Ethnic status and engagement with health services: Attitudes toward help-seeking and intercultural willingness to interact among South East Asian students in Australia.

Previous research has demonstrated the importance of intercultural willingness to interact; however, these investigations have yet to be applied to a health context or to compare an ethnic minority with a majority sample. Consequently, the current study sought to better understand engagement with health services by investigating both attitudes towards seeking psychological help and intercultural willingness to interact within an ethnic minority South East Asian population, relative to an Anglo Australian sample. As predicted, negative attitudes towards seeking psychological help were higher in the South East Asian sample, with this relationship persisting across generations, despite significant differences in acculturation. In contrast, intercultural willingness to interact was not associated with ethnicity status but was associated with higher anxiety, uncertainty, ethnocentrism and help-seeking, consistent with current empirical and theoretical literature. The current study also sought to examine factors associated with help-seeking attitudes and found that ethnocentrism was a significant predictor, when accounting for previous health experience.

Individual differences in emotionality and peri-traumatic processing.

BACKGROUND AND OBJECTIVES: Recent cognitive models propose that intrusive trauma memories arise and persist because high levels of emotional arousal triggered by the trauma disrupt conceptual processing of elements of the event, while enhancing sensory/perceptual processing. A trauma film analogue design was used to investigate if the predicted facilitating effects on intrusions from inhibiting conceptual processing and predicted attenuating effects on intrusions from inhibiting sensory processing are moderated by individual differences in emotionality. METHODS: One hundred and five non-clinical participants viewed a traumatic film while undertaking a conceptual interference task, a sensory interference task, or no interference task. Participants recorded the frequency and intensity of intrusions over the following week. RESULTS: There was no facilitating effect for the conceptual interference task compared to no interference task. A significant attenuation of the frequency of intrusions was evident for those undertaking sensory interference (ŋ(2) = .04). This effect, however, was only present for those with high trait anxiety (d = .82) and not for those with low trait anxiety (d = .08). Relative to high trait anxious controls, high anxious participants who undertook sensory interference also reported lower intensity of intrusions (d = .66). CONCLUSIONS: This is the first trauma film analogue study to show that the attenuating effect of concurrent sensory/perceptual processing on the frequency and intensity of subsequent intrusions is evident only for people with high trait anxiety. The results have implications for conceptual models of intrusion development and for their application to the prevention of post traumatic distress.