Devin Murphy

Who Decides? Decision Making and Fertility Preservation in Teens With Cancer: A Review of the Literature

PURPOSE The knowledge that cancer treatment may impair fertility in pediatric populations is an emerging aspect of quality of life in this population. However, decision making and use of fertility preservation (FP) among adolescent cancer patients and their families has not been well studied. This review summarizes the available published data on aspects of decision making and FP in adolescent cancer patients. METHODS An electronic search was performed to identify peer-reviewed studies published between 1999 and 2009 using key Medical Subject Heading terms and inclusion criteria. Inclusion criteria limited eligible studies to those that focused on adolescent decision making in cancer treatment or FP, fertility concerns in pediatric oncology, capacity for decision making, and health decision making in pediatrics. Studies that did not meet at least one of these criteria were excluded. RESULTS A total of 29 articles were reviewed and summarized. Three categories of results were seen: a focus on adolescent decision making in oncology, decision making in chronic illness, and decision making in cancer-related infertility and preservation. CONCLUSION Most of the studies showed that adolescents have a strong desire to participate in decisions related to their cancer treatment and many have concerns regarding their future fertility, although barriers often prevented these discussions. More research is needed to explore the role of teenagers and parents in decisions about fertility in relation to cancer treatment.

The need for reproductive and sexual health discussions with adolescent and young adult cancer patients

Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.

BRCA carriers' thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choices are just as difficult as none

Women with a BRCA mutation have unique concerns about childbearing and future fertility. In a focus group conducted among unaffected carriers, the majority of women held positive attitudes toward preimplantation genetic diagnosis to reduce transmission to future offspring and further identified unmet needs for education and support for decision making.

Preserving the Right to Future Children: An Ethical Case Analysis

We report on the case of a 2-year-old female, the youngest person ever to undergo ovarian tissue cryopreservation (OTC). This patient was diagnosed with a rare form of sickle cell disease, which required a bone-marrow transplant, and late effects included high risk of future infertility or complete sterility. Ethical concerns are raised, as the patients mother made the decision for OTC on the patients behalf with the intention that this would secure the option of biological childbearing in the future. Based on Beauchamp and Childresss principlism approach of respect for autonomy, nonmaleficence, beneficence, and justice, pursing OTC was ethically justified.

High-risk consumers’ perceptions of preimplantation genetic diagnosis for hereditary cancers: a systematic review and meta-analysis

Individuals carrying deleterious germline mutations placing them at increased risk for hereditary cancer syndromes (high-risk consumers) often have a great deal of fear and concern over transmitting mutations to their offspring, particularly conditions which are autosomal dominant. Preimplantation genetic diagnosis (PGD) is a procedure that can detect certain germline cancer predisposing mutations present in embryos. The objective of this review was to assess high-risk consumers’ knowledge and perceptions of PGD for hereditary cancers. A systematic literature review was conducted through PubMed, Wiley Interscience, PsychInfo, and Cochrane Library databases to identify all articles assessing consumer knowledge and attitudes of PGD for hereditary cancer syndromes. We assessed heterogeneity and the robustness of findings through additional analyses according to study location, hereditary cancer type, and sample size. Thirteen articles remained eligible after the application of specific criteria. Results show a general low level of knowledge about PGD for hereditary cancers, moderate rates of acceptability among high-risk groups, and high levels of need for information about PGD. Individuals in specific risk groups such as those with a personal or family history of hereditary breast and ovarian cancer (HBOC) syndrome or familial adenomatous polyposis (FAP) may benefit from educational information from healthcare professionals about the use of PGD.Genet Med 2012:14(2):191–200

Congruence of Reproductive Concerns Among Adolescents With Cancer and Parents: Pilot Testing an Adapted Instrument

OBJECTIVE: To identify whether a health-related quality of life (HRQoL) instrument intended to capture reproductive concerns is sensitive and appropriate for adolescent patients with cancer. METHODS: Pilot testing was completed by administering a 10-item instrument designed to identify reproductive concerns of female adolescent patients with cancer aged 12–18. Parents were also asked to predict their daughters’ responses. Fourteen patients and parents participated. The main outcome measures were language, relevance, accuracy, sensitivity, and missing content regarding the HRQoL instrument. Two pediatric hospitals and 1 local support group for patients and survivors served as the setting for this study. RESULTS: The majority of parents provided inaccurate predictions of their daughters’ responses regarding their reproductive concerns. Overall, parents underestimated their daughters’ concerns because the majority of adolescents reported a strong desire for future parenthood whereas parents expected their daughters to be satisfied with survivorship. CONCLUSIONS: Adolescent patients with cancer have strong reproductive concerns; however, this may not be captured on current HRQoL instruments and may be further neglected due to parents’ unawareness. Discussions should be encouraged with adolescent patients before beginning treatment regarding their concerns and values about parenting in the future and cannot rely on parent-proxy reports.

The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer

Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health‐related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow‐up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care. Cancer 2015;121:2529–2536.

Why Healthcare Providers Should Focus on the Fertility of AYA Cancer Survivors: It’s Not Too Late!

Reproductive health among cancer survivors is an important quality of life issue. Certain cancer therapies have known fertility risks. There is an existing cohort of adolescents and young adults (AYA) cancer survivors that, seen less frequently in clinical care settings than active patients, are likely not having discussions of fertility and other reproductive health issues. A survivor or healthcare provider can easily assume that the window of opportunity for fertility preservation has passed, however emerging research has shown this may not be the case. Recent data demonstrates a close relationship between fertility and other late effects to conclude that ongoing assessment during survivorship is warranted. Some fertility preservation procedures have also been shown to mitigate common late effects. This review explores the link between late effects from treatment and common comorbidities from infertility, which may exacerbate these late effects. This review also highlights the relevance of fertility discussions in the AYA survivorship population.

Adolescents with life-threatening illnesses.

Adolescents have unique physical and psychosocial needs. Adolescents want to gain autonomy, yet they must still rely on their parents for support. These unique needs are further complicated by a life-threatening illness. Adolescents with life-threatening illnesses must rely on their parents, due to legal aspects of decision making, and they also face potential loss of peer interaction as they spend more time in hospitals and away from their friends. Adolescents may also be concerned with fertility, reproduction, and sexuality, issues that are often not addressed in palliative care programs. To meet the unique needs of adolescents, specific palliative care programs may need to be developed.

Head-to-head comparisons of quality of life instruments for young adult survivors of childhood cancer

PurposeFew studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared the psychometric properties of two survivor-specific instruments, the Quality of Life–Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS).MethodsData from 151 YASCC who enrolled in cancer/tumor registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index, and root mean square error of approximation. We examined convergent/discriminant validity by comparing Pearson’s correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments versus heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments.ResultsYASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity.ConclusionsNeither instrument is superior. Item response theory is suggested to select high-quality items from different instruments to improve HRQOL measure for YASCC.