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1.
Pediatr Blood Cancer ; 71(7): e31041, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38715224

ABSTRACT

International and national oncofertility networks, including the US-led Oncofertility Consortium, FertiProtekt, and the Danish Network, have played pivotal roles in advancing the discipline of oncofertility over the last decade. Many other countries lack a shared approach to pediatric oncofertility health service delivery. This study aims to describe baseline oncofertility practices at Australian New Zealand Children's Haematology/Oncology Group centers in 2019-2021, describe binational priorities for care, and propose a 5-year action plan for best practice to be implemented by the newly formed Australian New Zealand Consortium in Children, Adolescents, and Young Adults (CAYA) Oncofertility (ANZCO).


Subject(s)
Fertility Preservation , Neoplasms , Humans , Adolescent , New Zealand , Fertility Preservation/methods , Child , Neoplasms/therapy , Neoplasms/complications , Young Adult , Female , Australia , Male , Adult
2.
Acta Obstet Gynecol Scand ; 103(4): 729-739, 2024 Apr.
Article in English | MEDLINE | ID: mdl-36915236

ABSTRACT

INTRODUCTION: Pregnancy-associated gynecological cancer (PAGC) refers to cancers of the ovary, uterus, fallopian tube, cervix, vagina, and vulva diagnosed during pregnancy or within 12 months postpartum. We aimed to describe the incidence of, and perinatal outcomes associated with, invasive pregnancy-associated gynecological cancer. MATERIAL AND METHODS: We conducted a population-based historical cohort study using linked data from New South Wales, Australia. We included all women who gave birth between 1994 and 2013, with a follow-up period extending to September 30, 2018. Three groups were analyzed: a gestational PAGC group (women diagnosed during pregnancy), a postpartum PAGC group (women diagnosed within 1 year of giving birth), and a control group (women with control diagnosis during pregnancy or within 1 year of giving birth). We used generalized estimation equations to compare perinatal outcomes between study groups. RESULTS: There were 1 786 137 deliveries during the study period; 70 women were diagnosed with gestational PAGC and 191 with postpartum PAGC. The incidence of PAGC was 14.6/100 000 deliveries and did not change during the study period. Women with gestational PAGC (adjusted odds ratio [aAOR] 6.81, 95% confidence interval [CI] 2.97-15.62) and with postpartum PAGC (aOR 2.65, 95% CI 1.25-5.61) had significantly increased odds of a severe maternal morbidity outcome compared with the control group. Babies born to women with gestational PAGC were more likely to be born preterm (aOR 3.11, 95% CI 1.47-6.59) and were at increased odds of severe neonatal complications (aOR 3.47, 95% CI 1.45-8.31) compared with babies born to women without PAC. CONCLUSIONS: The incidence of PAGC has not increased over time perhaps reflecting, in part, the effectiveness of cervical screening and early impacts of human papillomavirus vaccination programs in Australia. The higher rate of preterm birth among the gestational PAGC group is associated with adverse outcomes in babies born to these women.


Subject(s)
Papillomavirus Infections , Papillomavirus Vaccines , Premature Birth , Uterine Cervical Neoplasms , Pregnancy , Infant, Newborn , Female , Humans , New South Wales/epidemiology , Premature Birth/epidemiology , Premature Birth/etiology , Cohort Studies , Early Detection of Cancer , Uterine Cervical Neoplasms/diagnosis , Uterine Cervical Neoplasms/epidemiology , Australia , Parturition , Pregnancy Outcome/epidemiology
3.
Emerg Infect Dis ; 29(12): 2482-2487, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37987582

ABSTRACT

Avian paramyxovirus type 1 (APMV-1) is a virus of birds that results in a range of outcomes, from asymptomatic infections to outbreaks of systemic respiratory and neurologic disease, depending on the virus strain and the avian species affected. Humans are rarely affected; those who are predominantly experience mild conjunctivitis. We report a fatal case of neurologic disease in a 2-year-old immunocompromised child in Australia. Metagenomic sequencing and histopathology identified the causative agent as the pigeon variant of APMV-1. This diagnosis should be considered in neurologic conditions of undefined etiologies. Agnostic metagenomic sequencing methods are useful in such settings to direct diagnostic and therapeutic efforts.


Subject(s)
Communicable Diseases , Newcastle Disease , Animals , Child, Preschool , Humans , Australia/epidemiology , Columbidae , Newcastle Disease/epidemiology , Newcastle Disease/pathology , Newcastle disease virus , Phylogeny
4.
J Natl Compr Canc Netw ; 21(4): 366-372, 2023 04.
Article in English | MEDLINE | ID: mdl-37015339

ABSTRACT

BACKGROUND: Chemotherapy predisposes people who menstruate to abnormal uterine bleeding that can be life-threatening and may also damage ovaries, resulting in premature menopause. The purpose of this study was to explore the incidence of menstrual history documentation and counseling before, during, and after cancer treatment. PATIENTS AND METHODS: The medical charts of 137 consecutive females (self-reported) aged 18 to 49 years receiving anticancer treatment at a major tertiary metropolitan hospital in Australia between 2017 and 2020 were reviewed. Data collected included primary diagnosis, stage of cancer, treatment(s) received, rates of remission or progression, documentation of involvement of a specialist gynecologist, reproductive history, menstrual disturbances, menstruation counseling or intervention offered, and diagnosis of early ovarian failure. RESULTS: Only 16.1% of patients had their menstrual history documented at the initial consult, and 49.6% had their menstrual history documented at a subsequent consult with their treating oncologist or hematologist. Most (82.4%) patients with a menstrual history documented experienced menstrual disturbance posttreatment, most commonly amenorrhea (48.0%), followed by menopause or menopause symptoms (20.6%), irregular menstrual bleeding (16.7%), menorrhagia (13.7%), dysmenorrhea (3.9%), and iron deficiency from bleeding (2.9%). Menopause/Menopausal symptoms and iron deficiency were more likely to be treated than other disturbances. CONCLUSIONS: Menstruation disturbance is a common side effect of cancer treatment. Menstrual care should be integral to cancer care for people who menstruate, and higher engagement could be achieved through education of medical and allied health staff, information technology systems automating prompts and referral pathways, regular audits to ensure compliance, better alliances between cancer and fertility specialists, and the creation of accessible patient information to promote awareness and facilitate discussion.


Subject(s)
Menstruation , Neoplasms , Female , Humans , Amenorrhea , Menopause , Counseling , Neoplasms/epidemiology , Neoplasms/therapy
5.
Pediatr Blood Cancer ; 70 Suppl 5: e30551, 2023 09.
Article in English | MEDLINE | ID: mdl-37470746

ABSTRACT

Reproductive late effects after hematopoietic stem cell transplant can have a significant impact on cancer survivors' quality of life. Potential late effects include gonadal insufficiency, genital graft-versus-host disease, uterine injury, psychosexual dysfunction, and an increased risk of breast and cervical cancer in patients treated with total body irradiation. Despite guidelines, screening and treatment are not standardized among at-risk patients. Provider barriers include lack of knowledge of at-risk therapies and evidenced-based guidelines. Patient barriers include a reluctance to report symptoms and lack of awareness of treatment options. System barriers include inefficient implementation of screening tools and poor dissemination of guidelines to providers who serve as the medical home for survivors. This review guides the clinician in identifying and managing reproductive late effects after hematopoietic stem cell transplant to improve outcomes.


Subject(s)
Cancer Survivors , Hematopoietic Stem Cell Transplantation , Uterine Cervical Neoplasms , Female , Humans , Child , Adolescent , Young Adult , Hematopoietic Stem Cell Transplantation/adverse effects , Quality of Life , Transplantation, Homologous/adverse effects
6.
Pediatr Blood Cancer ; 70 Suppl 5: e28476, 2023 09.
Article in English | MEDLINE | ID: mdl-32633029

ABSTRACT

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.


Subject(s)
Fertility Preservation , Health Communication , Health Literacy , Neoplasms , Humans , Adolescent , Young Adult , Reproductive Health , Decision Making , Neoplasms/therapy , Neoplasms/psychology , Fertility Preservation/psychology
7.
Pediatr Blood Cancer ; 70 Suppl 5: e29422, 2023 09.
Article in English | MEDLINE | ID: mdl-36458682

ABSTRACT

Tumors of the breast and reproductive organs that occur in children, adolescents, and young adults (AYA) have different biological features and can present special challenges. Although prognosis for these tumors is generally favorable, the long-term effects of treatment can be debilitating. Treatments are often multimodal and may include surgery as well as chemotherapy and/or radiation, which can cause considerable distress and anxiety related to loss of femininity or masculinity, concern over future fertility, or sexual dysfunction. Thus, tumors of the reproductive organs in pediatric/AYA patients require special consideration of the treatment effects beyond the intended oncologic outcome. Multidisciplinary teams should be involved in their care and address issues of fertility, sexual dysfunction, and psychosexual concerns before treatment begins. This review addresses histology, risk factors, prognosis, staging and treatment of gynecologic, breast and testicular cancers in pediatric and AYA patients.


Subject(s)
Fertility Preservation , Neoplasms , Sexual Dysfunction, Physiological , Testicular Neoplasms , Male , Humans , Female , Child , Adolescent , Young Adult , Fertility , Neoplasms/therapy , Testicular Neoplasms/complications , Sexual Dysfunction, Physiological/etiology , Sexual Dysfunction, Physiological/therapy , Risk Factors
8.
Pediatr Blood Cancer ; 70 Suppl 5: e28823, 2023 09.
Article in English | MEDLINE | ID: mdl-37381156

ABSTRACT

As pediatric, adolescent, and young adult cancer survival rates increase, emphasis is placed on reducing late effects, including reproductive complications and potential impact to fertility. Male survivors are at risk of abnormalities in sperm, hormone deficiencies, and sexual dysfunction. This can impact one's progression into puberty and ability to have a biological child and impacts quality of life following treatment. Access to reproductive care is important and requires patient assessment and appropriate referral to reproductive specialists. This review addresses reproductive complications associated with therapy, standard-of-care testing, and therapeutic interventions. The psychologic impact on psychosexual functioning is also addressed.


Subject(s)
Neoplasms , Survivorship , Child , Humans , Male , Adolescent , Young Adult , Quality of Life , Semen , Neoplasms/complications , Survivors/psychology
9.
Arch Sex Behav ; 52(3): 901-920, 2023 04.
Article in English | MEDLINE | ID: mdl-36689129

ABSTRACT

There is a pressing need for greater understanding and focus on cancer survivorship and informal cancer caring of trans people (binary and non-binary), across tumor types, to inform culturally safe trans inclusive cancer information and care. This qualitative study, part of the mixed methods Out with Cancer project, examined experiences of trans embodiment and identity after cancer diagnosis and treatment. We drew on open-ended survey responses from 63 trans cancer survivors and 23 trans cancer carers, as well as interviews and a photo-elicitation activity with a subset of 22 participants (15 cancer survivors, 7 cancer carers). Reflexive thematic analysis identified three themes: Cancer enhances trans embodiment, through experiences of gender euphoria following cancer treatment, and acceleration of decisions about gender affirmation; cancer erases or inhibits gender affirmation; trans embodiment is invisible or pathologized in cancer care. These findings demonstrate that trans embodiment and identity, as well as the process of gender affirmation, may be disrupted by cancer or informal cancer caring. Conversely, cancer and cancer treatment can positively impact the embodied identity and lives of trans people, despite the anxiety and strain of negotiating medical procedures. However, if healthcare professionals operate within a cis-heteronormative framework and do not understand the meaning of embodied change following cancer treatment for trans individuals, these positive benefits may not be realized.


Subject(s)
Neoplasms , Transgender Persons , Transsexualism , Humans , Gender Identity , Neoplasms/therapy , Qualitative Research , Male , Female
10.
BMC Pregnancy Childbirth ; 23(1): 105, 2023 Feb 09.
Article in English | MEDLINE | ID: mdl-36759774

ABSTRACT

BACKGROUND: The incidence of pregnancy-associated cancer (PAC), comprising cancer diagnosed during pregnancy or within one year postpartum, is increasing. We investigated the obstetric management and outcomes of women with PAC and their babies. METHODS: A population-based observational study of all women who gave birth between 1994 and 2013 in New South Wales, Australia. Women were stratified into three groups: those diagnosed during pregnancy (gestational cancer group), those diagnosed within one year of giving birth (postpartum cancer group), and a no-PAC group. Generalized estimating equations were used to examine the association between PAC and adverse maternal and neonatal outcomes. RESULTS: One million seven hundred eighty-eight thousand four hundred fifty-onepregnancies were included-601 women (614 babies) were in the gestational cancer group, 1772 women (1816 babies) in the postpartum cancer group, and 1,786,078 women (1,813,292 babies) in the no-PAC group. The overall crude incidence of PAC was 132.7/100,000 women giving birth. The incidence of PAC increased significantly over the twenty-year study period from 93.5/100,000 in 1994 to 162.5/100,000 in 2013 (2.7% increase per year, 95% CI 1.9 - 3.4%, p-value < 0.001). This increase was independent of maternal age. The odds of serious maternal complications (such as acute abdomen, acute renal failure, and hysterectomy) were significantly higher in the gestational cancer group (adjusted odds ratio (AOR) 5.07, 95% CI 3.72 - 6.90) and the postpartum cancer group (AOR 1.55, 95% CI 1.16 - 2.09). There was no increased risk of perinatal mortality in babies born to women with PAC. However, babies of women with gestational cancer (AOR 8.96, 95% CI 6.96 - 11.53) or postpartum cancer (AOR 1.36, 95% CI 1.05 - 1.81) were more likely to be planned preterm birth. Furthermore, babies of women with gestational cancer had increased odds of a severe neonatal adverse outcome (AOR 3.13, 95% CI 2.52 - 4.35). CONCLUSION: Women with PAC are more likely to have serious maternal complications. While their babies are not at increased risk of perinatal mortality, they are more likely to experience poorer perinatal outcomes associated with preterm birth. The higher rate of birth intervention among women with gestational cancers reflects the complexity of clinical decision-making in this context.


Subject(s)
Neoplasms , Perinatal Death , Premature Birth , Pregnancy , Infant, Newborn , Female , Humans , Premature Birth/epidemiology , Parturition , Maternal Age , Neoplasms/epidemiology , Clinical Decision-Making , Pregnancy Outcome/epidemiology
11.
Intern Med J ; 2023 Nov 06.
Article in English | MEDLINE | ID: mdl-37929784

ABSTRACT

BACKGROUND: Chemotherapy is potentially harmful to a developing foetus, and there are limited data on the foetal impact of chemoimmunotherapy (CIT). Therefore, determining pregnancy status prior to initiation of CIT should be standard of care. AIMS: To determine how many women of childbearing age are tested for pregnancy prior to immunochemotherapy administration. METHODS: A retrospective chart review at a large Australian metropolitan cancer referral centre, including 304 women aged 18-51 years with a diagnosis of cancer receiving outpatient-based CIT between 1 May 2015 and 12 June 2020. We assessed the uptake of pregnancy screening and contraception counselling prior to and during first-line CIT. RESULTS: Only 17.3% of CIT cycles (n = 416) screened patients for pregnancy no more than 90 days prior to administration, and the median time between pregnancy screening and treatment was approximately 3 weeks. One patient with early breast cancer had a spontaneous miscarriage estimated at 3-4 weeks' gestation, and neither the patient nor the treating oncologist was aware of this event. This was also the only patient who had a pregnancy test beyond the first cycle of CIT during their treatment. CONCLUSIONS: Our results highlight a concerningly low rate of pregnancy screening in women of childbearing age receiving CIT. The implication of missing a positive pregnancy test in this group of women could result in foetal complications, accidental miscarriage, potential bleeding risks and avoidable psychosocial stress. This highlights the urgent need for guidelines to mandate pregnancy testing in women of childbearing age receiving CIT and evidence-based implementation tools.

12.
Birth ; 49(4): 763-773, 2022 12.
Article in English | MEDLINE | ID: mdl-35470904

ABSTRACT

OBJECTIVE: To determine the epidemiology, clinical management, and outcomes of women with gestational breast cancer (GBC). METHODS: A population-based prospective cohort study was conducted in Australia and New Zealand between 2013 and 2014 using the Australasian Maternity Outcomes Surveillance System (AMOSS). Women who gave birth with a primary diagnosis of breast cancer during pregnancy were included. Data were collected on demographic and pregnancy factors, GBC diagnosis, obstetric and cancer management, and perinatal outcomes. The main outcome measures were preterm birth, maternal complications, breastfeeding, and death. RESULTS: Forty women with GBC (incidence 7.5/100 000 women giving birth) gave birth to 40 live-born babies. Thirty-three (82.5%) women had breast symptoms at diagnosis. Of 27 women diagnosed before 30 weeks' gestation, 85% had breast surgery and 67% had systemic therapy during pregnancy. In contrast, all 13 women diagnosed from 30 weeks had their cancer management delayed until postdelivery. There were 17 preterm deliveries; 15 were planned. Postpartum complications included the following: hemorrhage (n = 4), laparotomy (n = 1), and thrombocytopenia (n = 1). There was one late maternal death. Eighteen (45.0%) women initiated breastfeeding, including 12 of 23 women who had antenatal breast surgery. There were no perinatal deaths or congenital malformations, but 42.5% of babies were preterm, and 32.5% were admitted for higher-level neonatal care. CONCLUSIONS: Gestational breast cancer diagnosed before 30 weeks' gestation was associated with surgical and systemic cancer care during pregnancy and planned preterm birth. In contrast, cancer treatment was deferred to postdelivery for women diagnosed from 30 weeks, reflecting the complexity of managing expectant mothers with GBC in multidisciplinary care settings.


Subject(s)
Breast Neoplasms , Pregnancy Complications, Neoplastic , Pregnancy Outcome , Female , Humans , Infant, Newborn , Pregnancy , Breast Neoplasms/epidemiology , Breast Neoplasms/mortality , Breast Neoplasms/therapy , Cesarean Section , New Zealand/epidemiology , Premature Birth/epidemiology , Prospective Studies , Pregnancy Outcome/epidemiology , Pregnancy Complications, Neoplastic/epidemiology , Pregnancy Complications, Neoplastic/mortality , Pregnancy Complications, Neoplastic/therapy , Australia/epidemiology , Breast Feeding/statistics & numerical data , Incidence , Time-to-Treatment/statistics & numerical data
13.
Lancet Oncol ; 22(2): e45-e56, 2021 02.
Article in English | MEDLINE | ID: mdl-33539753

ABSTRACT

Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effective interventions for fertility preservation across institutions. As part of the PanCareLIFE Consortium, and in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in female patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. This clinical practice guideline leverages existing evidence and international expertise to develop transparent recommendations that are easy to use to facilitate the care of female patients with childhood, adolescent, and young adult cancer who are at high risk for fertility impairment. A complete review of the existing evidence, including a quality assessment, transparent reporting of the guideline panel's decisions, and achievement of global interdisciplinary consensus, is an important result of this intensive collaboration.


Subject(s)
Cancer Survivors , Fertility Preservation/trends , Neoplasms/epidemiology , Neoplasms/therapy , Adolescent , Adult , Child , Female , Guidelines as Topic , Humans , Neoplasms/complications , Neoplasms/pathology , Risk Assessment , Young Adult
14.
Lancet Oncol ; 22(2): e57-e67, 2021 02.
Article in English | MEDLINE | ID: mdl-33539754

ABSTRACT

Male patients with childhood, adolescent, and young adult cancer are at an increased risk for infertility if their treatment adversely affects reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of interventions that preserve fertility. As part of the PanCareLIFE Consortium, in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in male patients who are diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. Recognising the need for global consensus, this clinical practice guideline used existing evidence and international expertise to rigorously develop transparent recommendations that are easy to use to facilitate the care of male patients with childhood, adolescent, and young adult cancer who are at high risk of fertility impairment and to enhance their quality of life.


Subject(s)
Fertility Preservation/trends , Neoplasms/epidemiology , Neoplasms/therapy , Adolescent , Adult , Cancer Survivors , Child , Guidelines as Topic , Humans , Male , Neoplasms/complications , Neoplasms/pathology , Risk Assessment , Young Adult
15.
Lancet Oncol ; 22(2): e68-e80, 2021 02.
Article in English | MEDLINE | ID: mdl-33539755

ABSTRACT

Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.


Subject(s)
Cancer Survivors , Fertility Preservation/ethics , Guidelines as Topic , Neoplasms/epidemiology , Adolescent , Adult , Child , Disease Progression , Female , Fertility Preservation/trends , Humans , Male , Neoplasms/complications , Neoplasms/pathology , Neoplasms/therapy , Young Adult
16.
Psychooncology ; 30(10): 1626-1642, 2021 10.
Article in English | MEDLINE | ID: mdl-34081823

ABSTRACT

OBJECTIVES: Survivors of adolescent and young adult (AYA) cancer report deficits in social functioning relative to healthy peers. Identifying factors related to their social functioning is critical to improve their long-term social outcomes. This review addressed: (1) How is social functioning defined and measured among studies of AYAs who have had cancer? (2) What factors have quantitatively/qualitatively are associated with/predictors of social functioning? and (3) What associated factors/predictors of social functioning are modifiable and amenable to intervention? METHODS: A systematic review was conducted to identify publications from 2000 to 2021, meeting these criteria: (1) mean/median age at diagnosis/treatment 13-40, (2) assessed social functioning with a validated measure and included factors associated with/predictive of social functioning and/or qualitatively assessed young people's perceptions of factors related to their social functioning and (3) was peer-reviewed/published in English. RESULTS: Thirty-seven publications were included. Definitions and measures of social functioning varied, and factors related to social functioning varied based on definition. Factors most commonly associated with decreased social functioning included treatment status (receiving or completed treatment), poor physical functioning, depression, negative body image, engaging in social comparisons, social/cultural stigma around cancer, and fatigue. Increased social functioning was most commonly associated with social support and the quality/age-appropriateness of care. CONCLUSIONS: Social functioning is multidimensional construct for AYAs diagnosed with cancer and may not be adequately assessed with measures of adjustment or quality of life. Future studies should clarify how to optimally define and measure social functioning in this population, to ensure their functioning can be protected and promoted long-term.


Subject(s)
Neoplasms , Quality of Life , Adolescent , Humans , Neoplasms/therapy , Social Adjustment , Social Interaction , Social Support , Young Adult
17.
Pediatr Blood Cancer ; 68(12): e29398, 2021 12.
Article in English | MEDLINE | ID: mdl-34606168

ABSTRACT

PURPOSE: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. METHODS: We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. RESULTS: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. CONCLUSIONS: Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.


Subject(s)
Cancer Survivors , Neoplasms , Child , Humans , Neoplasms/therapy , Parents , Quality of Life , Surveys and Questionnaires , Survivors
18.
J Assist Reprod Genet ; 38(1): 3-15, 2021 Jan.
Article in English | MEDLINE | ID: mdl-33405006

ABSTRACT

PURPOSE: Today, male and female adult and pediatric cancer patients, individuals transitioning between gender identities, and other individuals facing health extending but fertility limiting treatments can look forward to a fertile future. This is, in part, due to the work of members associated with the Oncofertility Consortium. METHODS: The Oncofertility Consortium is an international, interdisciplinary initiative originally designed to explore the urgent unmet need associated with the reproductive future of cancer survivors. As the strategies for fertility management were invented, developed or applied, the individuals for who the program offered hope, similarly expanded. As a community of practice, Consortium participants share information in an open and rapid manner to addresses the complex health care and quality-of-life issues of cancer, transgender and other patients. To ensure that the organization remains contemporary to the needs of the community, the field designed a fully inclusive mechanism for strategic planning and here present the findings of this process. RESULTS: This interprofessional network of medical specialists, scientists, and scholars in the law, medical ethics, religious studies and other disciplines associated with human interventions, explore the relationships between health, disease, survivorship, treatment, gender and reproductive longevity. CONCLUSION: The goals are to continually integrate the best science in the service of the needs of patients and build a community of care that is ready for the challenges of the field in the future.


Subject(s)
Cancer Survivors , Fertility Preservation/trends , Fertility/physiology , Neoplasms/epidemiology , Female , Fertility Preservation/legislation & jurisprudence , Humans , Male , Neoplasms/pathology , Neoplasms/therapy , Quality of Life
19.
Pediatr Blood Cancer ; 67(7): e28345, 2020 07.
Article in English | MEDLINE | ID: mdl-32333636

ABSTRACT

OBJECTIVE: Childhood cancer can have short- and long-term impacts on parents' finances and employment. It is important to understand how families adjust to the financial and employment changes caused by childhood cancer, the ongoing impacts after treatment completion, and which families need more targeted support. Qualitative research is necessary to facilitate an in-depth understanding of the employment and financial impacts on families and to capture parents' complex and nuanced experiences and perspectives. METHODS: We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treatment completion; 89% mothers) using the vocational and financial impact section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form. We analyzed interviews using content analysis. RESULTS: Parents reported multiple sources of financial toxicity including travel to and from the hospital and needing to reduce their working hours during their child's cancer treatment. Workplace flexibility was an important factor to protect against unwanted vocational changes. After treatment completion, families living in low socioeconomic areas commonly reported ongoing financial difficulties. Mothers, particularly those who were on maternity leave when their child was diagnosed with cancer, reported ongoing employment impacts including unemployment. CONCLUSIONS: Clinical staff including social workers could more consistently assess families' financial distress and refer to professional services who can offer guidance for financial decision-making as standard care. Flexible workplace agreements appear important for parents of children with cancer. Our findings can assist organizations to understand that cancer-related disruptions are likely to continue after treatment completion, and therefore should offer benefits to parents where possible.


Subject(s)
Cost of Illness , Employment/statistics & numerical data , Neoplasms/economics , Neoplasms/nursing , Parents/psychology , Return to Work/psychology , Adult , Child , Child, Preschool , Conflict, Psychological , Female , Follow-Up Studies , Humans , Male , Middle Aged , Neoplasms/therapy , Prognosis , Qualitative Research , Retrospective Studies , Socioeconomic Factors , Young Adult
20.
Br J Cancer ; 121(8): 719-721, 2019 10.
Article in English | MEDLINE | ID: mdl-31488880

ABSTRACT

Chemotherapy during a viable pregnancy may be associated with adverse perinatal outcomes. We conducted a prospective cohort study to examine the perinatal outcomes of babies born following in utero exposure to chemotherapy in Australia and New Zealand. Over 18 months we identified 24 births, of >400 g and/or >20-weeks' gestation, to women diagnosed with breast cancer in the first or second trimesters. Eighteen babies were exposed in utero to chemotherapy. Chemotherapy commenced at a median of 20 weeks gestation, for a mean duration of 10 weeks. Twelve exposed infants were born preterm with 11 by induced labour or pre-labour caesarean section. There were no perinatal deaths or congenital malformations. Our findings show that breast cancer diagnosed during mid-pregnancy is often treated with chemotherapy. Other than induced preterm births, there were no serious adverse perinatal outcomes.


Subject(s)
Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Breast Neoplasms/drug therapy , Congenital Abnormalities/epidemiology , Perinatal Death , Pregnancy Complications, Neoplastic/drug therapy , Premature Birth/epidemiology , Stillbirth/epidemiology , Adult , Australia/epidemiology , Carboplatin/administration & dosage , Case-Control Studies , Cesarean Section , Cohort Studies , Continuous Positive Airway Pressure , Cyclophosphamide/administration & dosage , Docetaxel/administration & dosage , Doxorubicin/administration & dosage , Female , Gestational Age , Humans , Infant, Low Birth Weight , Infant, Newborn , Infant, Small for Gestational Age , Labor, Induced , New Zealand/epidemiology , Paclitaxel/administration & dosage , Pregnancy , Pregnancy Trimester, First , Pregnancy Trimester, Second , Prospective Studies , Respiratory Distress Syndrome, Newborn/epidemiology , Respiratory Distress Syndrome, Newborn/therapy , Tamoxifen/administration & dosage , Trastuzumab/administration & dosage
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