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In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Gender Specific Studies | Health Promotion | Public Health and Health Services not elsewhere classified | Public Health and Health Services |
Specific Population Health (excl. Indigenous Health) not elsewhere classified | Gender and Sexualities | Health Inequalities
Publisher: Mary Ann Liebert Inc
Date: 04-2022
Publisher: Mary Ann Liebert Inc
Date: 06-2022
Publisher: Wiley
Date: 27-12-2018
DOI: 10.1002/PON.4961
Abstract: 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. 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. 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. 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.
Publisher: Informa UK Limited
Date: 07-2015
DOI: 10.2147/COAYA.S83811
Publisher: SAGE Publications
Date: 06-2016
Publisher: Mary Ann Liebert Inc
Date: 22-05-2023
Publisher: Mary Ann Liebert Inc
Date: 27-06-2023
Publisher: Royal Society of Chemistry (RSC)
Date: 2015
DOI: 10.1039/C5CC02534F
Abstract: Smooth organolead halide perovskite films were prepared by a facile blow-drying method in ambient air for achieving efficient and low cost meso lanar hybrid structured perovskite solar cells.
Publisher: Wiley
Date: 27-10-2023
DOI: 10.1111/ANDR.13546
Publisher: Wiley
Date: 24-08-2017
DOI: 10.1002/PON.4518
Abstract: The emerging discipline of oncofertility advocates for the timely provision of fertility information and referral for fertility preservation to all cancer patients of reproductive age (<45 years). A systematic review was undertaken on the clinician provision of oncofertility support to determine whether cancer patients are having their support needs adequately met by staff. An initial search conducted in May 2016 identified 351 potentially relevant studies. The papers were ided into 2 categories: Papers on the clinician provision of oncofertility support were reviewed for this study, and papers on patient oncofertility support needs were reviewed for a separate systematic review. A total of 23 studies were included within the final review of this manuscript. Although many clinicians are broadly informed about the risk to their patients' fertility brought about by cancer treatment, there are many factors which hinder the appropriate discussion, referral, or service utilisation needed to provide adequate oncofertility support to patients of reproductive age. Oncofertility support is often not delivered to the standard of current guidelines, with many clinicians not providing the recommended care to all eligible patients, and as such many patients may lack the oncofertility support that they require. The implementation of a clear procedural process would assist clinicians in the provision of oncofertility support for cancer patients of reproductive age.
Publisher: Wiley
Date: 02-05-2016
DOI: 10.1002/PBC.26001
Publisher: Elsevier BV
Date: 2014
Publisher: Wiley
Date: 04-10-2021
DOI: 10.1002/PBC.29398
Abstract: 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. We recruited parents of survivors who were currently years, and 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. 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. 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.
Publisher: Mary Ann Liebert Inc
Date: 04-2022
Publisher: JMIR Publications Inc.
Date: 09-2017
Abstract: dolescent and young adults with cancer are at increased risk of psychosocial difficulties relative to their healthy peers. Current models of inpatient face-to-face psychosocial care might limit the capacity for clinicians to provide timely and personalized assessment and intervention for this group. Telehealth offers a promising alternative toward increasing access to the provision of evidence-based psychosocial assessment and treatment for adolescent and young adults with cancer. his pilot study aimed to assess the feasibility and acceptability for both patients and clinicians of providing a psychosocial assessment via telehealth to adolescents and young adults currently receiving treatment for cancer, relative to face-to-face delivery. e included patients who were aged 15-25 years, currently receiving treatment, could speak English well, and medically stable. Patients were recruited from oncology clinics or wards from 5 hospitals located across Sydney and Canberra, Australia, and allocated them to receive psychosocial assessment (Adolescent and Young Adult Oncology Psychosocial Assessment Measure) with a clinical psychologist or social worker through face-to-face or telehealth modalities using a partially randomized patient preference model. Patients completed a pre- and postassessment questionnaire comprising validated and purposely designed feasibility and acceptability indices, including the impact of technical difficulties, if patients had their own devices number of patients who were content with their group allocation self-reported preference of modality Treatment Credibility and Expectations Questionnaire and Working Alliance Inventory. Clinicians also completed a postassessment questionnaire rating their impressions of the acceptability and feasibility of intervention delivery by each modality. f 29 patients approached, 23 consented to participate (response rate: 79%). Participants were partially randomized to either telehealth (8/23, 35% mean age 16.50 years, range 15-23 years females: 4/8, 50%) or face-to-face (11/23, 62% mean age 17 years, range 15-22 years females: 8/11, 72%) conditions. Four participants withdrew consent because of logistical or medical complications (attrition rate: 17.4%). Most participants (6/8, 75%) in the telehealth group used their computer or iPad (2 were provided with an iPad), with minor technical difficulties occurring in 3 of 8 (37.5%) assessments. Participants in both groups rated high working alliance (Working Alliance Inventory median patient response in the telehealth group, 74, range 59-84 and face-to-face group, 63, range 51-84) and reported positive beliefs regarding the credibility and expectations of their treatment group. Postassessment preferences between face-to-face or telehealth modalities varied. Most patients in the telehealth group (5/8, 63%) reported no preference, whereas 6 of 11 (55%) in the face-to-face group reported a preference for the face-to-face modality. elehealth is acceptable as patient comfort was comparable across modalities, with no significant technological barriers experienced. However, patients varied in their preferred interview modality, highlighting the need to tailor the treatment to patient preference and circumstances. ustralian New Zealand Clinical Trials Registry ACTRN12614001142628 www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366609 (Archived by WebCite at 21889HpE)
Publisher: Springer Science and Business Media LLC
Date: 23-01-2023
DOI: 10.1007/S10508-023-02530-9
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 in iduals, these positive benefits may not be realized.
Publisher: Elsevier BV
Date: 02-2018
DOI: 10.1016/J.CLBC.2017.06.016
Abstract: Improvements in local and systemic treatment, along with earlier diagnoses through breast awareness and screening, have led to increases in survival and a decline in breast cancer (BC) recurrence. To the best of our knowledge, no meta-analysis has yet focused on pregnancy outcomes after BC treatment. Hence, our research group explored the reproductive outcomes (pregnancy, miscarriage, termination of pregnancy, live births) after BC treatment. The Embase, MEDLINE, PubMed, and Scopus databases were searched. Studies were included that reported on pregnancy and reproductive outcomes after treatment of BC. A meta-analysis of 16 studies with subgroup analyses was conducted. In the matched cohort and case-control studies (n = 1287), subgroup analysis showed that women who had received systemic therapy after surgery had an overall pooled estimate of 14% (95% confidence interval [CI], 0.12-0.16 I
Publisher: Informa UK Limited
Date: 17-11-2018
DOI: 10.1080/08880018.2018.1541492
Abstract: Anaplastic lymphoma kinase (ALK) inhibitors such as crizotinib and alectinib have been shown to have significant activity in ALK-rearranged non-small cell lung cancers (NSCLC). There are no data for alectinib's safety or efficacy in younger patients, though it is superior to crizotinib in adult trials. We present a 14-year old girl diagnosed with stage IV-B ALK-positive adenocarcinoma of the lung after presenting with cough and fever. She was commenced on alectinib at adult dose and has had sustained complete metabolic remission for 9 months. She is the youngest patient with lung adenocarcinoma to be treated with alectinib.
Publisher: Oxford University Press (OUP)
Date: 20-11-2018
Publisher: Informa UK Limited
Date: 15-05-2018
DOI: 10.1080/07347332.2018.1443986
Abstract: This study investigated the impact of fertility-related discussions on Adolescent and Young Adult (AYA) cancer patients' quality of life (QoL) and the factors influencing provision of these discussions. Recruitment was conducted through population-based state cancer registries. Eligible AYAs were 15-24 years at diagnosis, 3-24 months postdiagnosis, with any cancer (except early stage melanoma). As part of a larger survey, AYAs were asked about their experiences of fertility-related discussions and QoL (FACT-G). Of the 207 AYAs returning surveys (29% response rate) 88% reported a discussion about infertility risks, 75% reported a discussion about preservation options and 59% were offered a referral to a fertility specialist. Patients attending health services with an AYA focus were more likely than those attending other types of centers to report discussions of fertility preservation (FP) options (85% versus 67%) and referrals (75% versus 49%). Social well-being was positively related to discussions about preservation options and being provided fertility risk information in a sensitive, supportive manner. Providing a sensitive and proactive discussion about fertility-related risks may benefit AYAs' well-being. Services with an AYA focus are fulfilling their mandate of ensuring optimal fertility-related care for AYA cancer patients.
Publisher: MDPI AG
Date: 09-11-2021
Abstract: We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents’ health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child’s quality of life. Seventy-six parents opted in 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents’ health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.
Publisher: Wiley
Date: 24-07-2018
DOI: 10.1002/PBC.27349
Abstract: While several studies have examined the treatment of adolescents and young adults (AYAs) with acute lymphoblastic leukemia (ALL), studies of acute myeloid leukemia (AML) are rare. Using national data for Australia, we describe (i) the number and type of treatment centers caring for AYAs, (ii) induction/first-line treatments, and (iii) survival outcomes. National population-based study assessing treatment of 15- to 24-year-olds diagnosed with ALL or AML between 2007 and 2012. Treatment details were abstracted from hospital medical records. Treatment centers were classified as pediatric or adult (adult AYA-focused or other adult and by AYA volume [high/low]). Cox proportional hazard regression analyses examined associations between treatment and overall, event-free, and relapse-free survival outcomes. Forty-seven hospitals delivered induction therapy to 351 patients (181 ALL and 170 AML), with 74 (21%) treated at pediatric centers 70% of hospitals treated less than two AYA leukemia patients per year. Regardless of treatment center, 82% of ALL patients were on pediatric protocols. For AML, pediatric protocols were not used in adult centers, with adult centers using a non-COG 7+3-type induction protocol (51%, where COG is Cooperative Oncology Group) or an ICE-type protocol (39%, where ICE is idarubicin, cytarabine, etoposide). Exploratory analyses suggested that for both ALL and AML, AYAs selected for adult protocols have worse overall, event-free, and relapse-free survival outcomes. Pediatric protocols were commonly used for ALL patients regardless of where they are treated, indicating rapid assimilation of recent evidence by Australian hematologists. For AML, pediatric protocols were only used at pediatric centers. Further investigation is warranted to determine the optimal treatment approach for AYA AML patients.
Publisher: Wiley
Date: 30-01-2018
DOI: 10.1002/PON.4625
Abstract: To examine the relationship between the cancer care experiences of adolescents and young adults (AYAs) and their quality of life. Two hundred and nine AYAs completed a cross-sectional, self-report survey distributed through the population-based cancer registries in 2 Australian states (New South Wales and Victoria). Eligible AYAs were 15 to 24 years old when diagnosed with any cancer (excluding early-stage melanoma) and were 3 to 24 months post-diagnosis. Questions examined whether particular care experiences occurred for the patient at different points in the cancer care pathway, including diagnosis, treatment, inpatient care, and at the end of treatment. Quality of life was assessed using the Functional Assessment of Cancer Therapy-General scale. Positive experiences of care at diagnosis, during treatment, during inpatient stays, and when finishing treatment were associated with higher functional, emotional, and social well-being. However, these associations generally became nonsignificant when communication and support experiences were included in the model. Inpatient experiences positively influenced emotional well-being over and above the effect of communication and support experiences. The results suggest that, for most AYAs' quality of life outcomes, positive experiences of age-appropriate communication and emotional support may underpin the effect of positive experiences of care throughout the cancer care pathway. The results support the need for communication and support tailored to an AYA audience, as recognised by recent Australian and international guidelines on the care of AYAs with cancer.
Publisher: Mary Ann Liebert Inc
Date: 02-2018
Abstract: To qualitatively examine the experiences of diagnosis and treatment, and attitudes toward ongoing healthcare of adolescent and young adult (AYA) survivors of AYA cancer, to determine barriers to healthcare engagement in the early survivorship period. Forty-two participants aged between 15 and 25 years were recruited between February 2013 and October 2015 as part of a larger Australia-wide study. This study analyzed data collected through a semistructured telephone interview. Interviews were recorded and transcribed verbatim and then coded line-by-line. Data were analyzed for emergent themes using the qualitative software NVivo. Many participants demonstrated a good understanding of their cancer diagnosis and treatment. Participants expressed high levels of confidence in their healthcare teams and demonstrated a conscientious approach to their ongoing cancer-specific and general healthcare. However, most AYAs had expectations of the cancer journey that differed from the realities of their experiences. The results further highlight the crucial role of healthcare professionals in ensuring AYA cancer patients have accurate expectations of diagnosis and treatment, and develop a strong working knowledge of their disease that is maintained into survivorship. AYA cancer survivors may require ongoing education and support to stay engaged with long-term follow-up care.
Publisher: Wiley
Date: 13-09-2017
DOI: 10.1002/PON.4502
Abstract: Decline in fertility potential brought about by a cancer diagnosis or cancer treatment is one of the biggest impacts to cancer patients' long-term quality of life. As such, the current manuscript aimed to systematically review the literature on oncofertility support needs for cancer patients of a reproductive age (14-45 years of age). A systematic review of the literature was conducted in May 2016 through the searching of electronic databases Medline, EMBASE, PSYCH Info, Web of Science and SCOPUS, alongside the screening of relevant reference lists. An initial search identified 351 potentially relevant studies. The papers were ided into 2 categories papers on patient oncofertility support needs were reviewed for this systematic review, and papers on clinician provision of oncofertility support were reviewed for a separate systematic review. A total of 30 studies were included within the final review. Support needs were categorised as information, service, clinician-patient interactions, psychological, and family. A number of studies indicated that cancer patients place great important on their oncofertility care and have unmet support needs. Patients were satisfied and felt supported when additional care was taken to ensure fertility information and service needs were met. Patients desire for clinicians to support their concerns through the provision of adequate information, access to oncofertility services, taking time to discuss oncofertility treatment and concerns, specialised psychological support, and responsiveness to in idual needs.
Publisher: Mary Ann Liebert Inc
Date: 06-2017
Abstract: There are a number of barriers that result in cancer patients not being referred for oncofertility care, which include knowledge about reproductive risks of antineoplastic agents. Without this information, clinicians do not always make recommendations for oncofertility care. The objective of this study was to describe the level of reproductive information and recommendations that clinicians have available in clinical trial protocols regarding oncofertility management and follow-up, and the information that patients may receive in clinical trials patient information sheets or consent forms. A literature review of the 71 antineoplastic drugs included in the 68 clinical trial protocols showed that 68% of the antineoplastic drugs had gonadotoxic animal data, 32% had gonadotoxic human data, 83% had teratogenic animal data, and 32% had teratogenic human data. When the clinical trial protocols were reviewed, only 22% of the protocols reported the teratogenic risks and 32% of the protocols reported the gonadotoxic risk. Only 56% of phase 3 protocols had gonadotoxic information and 13% of phase 3 protocols had teratogenic information. Nine percent of the protocols provided fertility preservation recommendations and 4% provided reproductive information in the follow-up and survivorship period. Twenty-six percent had a section in the clinical trials protocol, which identified oncofertility information easily. When gonadotoxic and teratogenic effects of treatment were known, they were not consistently included in the clinical trial protocols and the lack of data for new drugs was not reported. Very few protocols gave recommendations for oncofertility management and follow-up following the completion of cancer treatment. The research team proposes a number of recommendations that should be required for clinicians and pharmaceutical companies developing new trials.
Publisher: Springer Science and Business Media LLC
Date: 11-04-2015
Publisher: Mary Ann Liebert Inc
Date: 03-2017
Publisher: Elsevier BV
Date: 10-2018
DOI: 10.1016/J.PATHOL.2018.07.002
Abstract: Malignant gastrointestinal neuroectodermal tumour (GNET) is a recently characterised rare and aggressive tumour that typically arises in association with the small intestine of adults. We present a novel case of this entity and expand the spectrum of its reported morphological features. The patient was a 5-year-old female, the youngest reported patient affected by the condition, and presented with extra-abdominal disease. The histopathological features included the presence of a junctional component of the palatal tumour, which mimicked mucosal melanoma, a feature that has not been previously reported in GNET. Whole genome and RNA sequencing was performed that demonstrated the EWSR1-ATF1 translocation characteristic of GNET. Knowledge of this entity and its features, together with careful morphological assessment supplemented by judicious immunohistochemical and molecular studies should enable the correct diagnosis to be established.
Publisher: Mary Ann Liebert Inc
Date: 04-2018
Abstract: Adolescents and young adults (AYAs) with cancer have unique cancer care needs that differ significantly from younger and older cancer patients. There has been an increasing appreciation for this unique group of patients internationally, with a rise in research and establishment of innovative models of care dedicated to addressing their needs. This narrative review identifies common elements and barriers to care for AYA cancer patients and survivors, and offers recommendations for developing clinical care models for this age-defined population.
Publisher: MDPI AG
Date: 09-07-2021
Abstract: Medulloblastoma is a rare brain malignancy. Patients after puberty are rare and bear an intermediate prognosis. Standard treatment consists of maximal resection plus radio-chemotherapy. Treatment toxicity is high and produces disabling long-term side effects. The sonic hedgehog (SHH) subgroup is highly overrepresented in the post-pubertal and adult population and can be targeted by smoothened (SMO) inhibitors. No practice-changing prospective randomized data have been generated in adults. The EORTC 1634-BTG/NOA-23 trial will randomize patients between standard-dose vs. reduced-dosed craniospinal radiotherapy and SHH-subgroup patients between the SMO inhibitor sonidegib (OdomzoTM, Sun Pharmaceuticals Industries, Inc., New York, USA) in addition to standard radio-chemotherapy vs. standard radio-chemotherapy alone to improve outcomes in view of decreased radiotherapy-related toxicity and increased efficacy. We will further investigate tumor tissue, blood, and cerebrospinal fluid as well as magnetic resonance imaging and radiotherapy plans to generate information that helps to further improve treatment outcomes. Given that treatment side effects typically occur late, long-term follow-up will monitor classic side effects of therapy, but also health-related quality of life, cognition, social and professional outcome, and reproduction and fertility. In summary, we will generate unprecedented data that will be translated into treatment changes in post-pubertal patients with medulloblastoma and will help to design future clinical trials.
Publisher: Springer Science and Business Media LLC
Date: 09-11-2015
Abstract: NUT midline carcinoma (NMC) is a fatal cancer that arises in various tissues along the upper midline of the body. The defining molecular feature of NMC is a chromosomal translocation that joins (in the majority of cases) the nuclear testis gene NUT ( NUTM1 ) to the bromodomain protein family member 4 ( BRD4 ) and thereby creating a fusion oncogene that disrupts cellular differentiation and drives the disease. In this study, we report the case of an adolescent NMC patient presenting with severe facial pain, proptosis and visual impairment due to a mass arising from the ethmoid sinus that invaded the right orbit and frontal lobe. Treatment involved radical resection, including exenteration of the affected eye with the view to consolidate treatment with radiation therapy however, the patient experienced rapid tumor progression and passed away 79 days post resection. Molecular analysis of the tumor tissue identified a novel in-frame BRD4-NUT transcript, with BRD4 exon 15 fused to the last 124 nucleotides of NUT exon 2 ( BRD4-NUT ex15:ex2 Δnt1–585 ). The partial deletion of NUT exon 2 was attributed to a mid-exonic genomic breakpoint and the subsequent activation of a cryptic splice site further downstream within the exon. Inhibition of the canonical 3′ acceptor splice site of NUT intron 1 in cell lines expressing the most common NMC fusion transcripts (PER-403, BRD4-NUT ex11:ex2 PER-624, BRD4-NUT ex15:ex2) induced alternative splicing from the same cryptic splice site as identified in the patient. Detection of low levels of an in-frame BRD4-NUT ex11:ex2 Δnt1–585 transcript in PER-403 confirmed endogenous splicing from this alternative exon 2 splice site. Although further studies are necessary to assess the clinical relevance of the increasing number of variant fusions described in NMC, the findings presented in this case identify alternative splicing as a mechanism that contributes to this pathogenic complexity.
Publisher: Wiley
Date: 28-11-2018
DOI: 10.1002/PON.4938
Abstract: Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period. A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program. Sixty-one participants took part (45 AYAs, 51.1% female 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks. The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery.
Publisher: Wiley
Date: 09-2016
DOI: 10.1111/IMJ.13191
Abstract: The aim of this study was to describe the time and documentation needed to gain ethics and governance approvals in Australian states with and without a centralised ethical review system. This is a prospective descriptive study undertaken between February 2012 and March 2015. Paediatric and adult hospitals (n = 67) in Australian states were approached to allow the review of their medical records. Participants included 15- to 24-year-olds diagnosed with cancer between 2008 and 2012. The main outcomes measures were time (weeks) to approval for ethics and governance and the number and type of documents submitted. Centralised ethics approval processes were used in five states, with approval taking between 2 and 18 weeks. One state did not use a centralised process, with ethics approval taking a median of 4.5 weeks (range: 0-15) per site. In four states using a centralised ethics process, 33 governance applications were submitted, with 20 requiring a site clinician listed as an investigator. Governance applications required the submission of 11 documents on average, including a Site-Specific Assessment form. Thirty-two governance applications required original signatures from a median of 3.5 (range: 1-10) non-research persons, which took a median of 5 weeks (range: 0-15) to obtain. Governance approval took a median of 6 weeks (range: 1-45). Twelve research study agreements were needed, each taking a median of 7.5 weeks (range: 1-20) to finalise. The benefits of centralised ethics review systems have not been realised due to duplicative, inflexible governance processes. A system that allowed the recognition of prior ethical approval and low-risk applications was more efficient than a central ethics and site-specific governance process.
Publisher: Elsevier BV
Date: 06-2018
DOI: 10.1016/J.EJON.2018.02.007
Abstract: A cancer diagnosis and treatment may have significant implications for a young patient's future fertility. Documentation of fertility-related discussions and actions is crucial to providing the best follow-up care, which may occur for many years post-treatment. This study examined the rate of medical record documentation of fertility-related discussions and fertility preservation (FP) procedures for adolescents and young adults (AYAs) with cancer in Australia. A retrospective review of medical records for 941 patients in all six Australian states. Patients were identified through population-based cancer registries (four states) and hospital admission lists (two states). Trained data collectors extracted information from medical records using a comprehensive data collection survey. Records were reviewed for AYA patients (aged 15-24 years at diagnosis), diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, central nervous system (CNS) tumours, soft tissue sarcomas (STS), primary bone cancer or Ewing's family tumours between 2007 and 2012. 47.2% of patients had a documented fertility discussion and 35.9% had a documented FP procedure. Fertility-related documentation was less likely for female patients, those with a CNS or STS diagnosis and those receiving high-risk treatments. In multivariable models, adult hospitals with an AYA focus were more likely to document fertility discussions (odds ratio[OR] = 1.60 95%CI = 1.08-2.37) and FP procedures (OR = 1.74 95%CI = 1.17-2.57) than adult hospitals with no AYA services. These data provide the first national, population-based estimates of fertility documentation for AYA cancer patients in Australia. Documentation of fertility-related discussions was poor, with higher rates observed in hospitals with greater experience of treating AYA patients.
Publisher: Mary Ann Liebert Inc
Date: 06-2018
Abstract: To examine the care experiences of Australian Adolescents and Young Adults (AYAs) with cancer during a period when youth cancer services (YCS) were developing across the country. A cross-sectional, self-report survey completed by 207 recently diagnosed AYAs with cancer, recruited from the population-based cancer registries of Australia's two most populous states. AYAs were 15 to 24 years old when diagnosed with any form of cancer (except melanoma <3 mm or stage I/II). Respondents indicated whether certain events/experiences occurred at various points along the cancer care pathway and the treatment centers attended. Treatment centers with YCS were identified. Participating AYAs were an average of 9 months post-diagnosis. AYAs were treated in over 60 centers, with only 31% attending YCS. While experiences relating to delivery of treatment were generally positive, supportive care experiences and emotional support were missing for many. Information provision at the end of treatment was low, with 60% not receiving a treatment summary and 50% not receiving a written follow-up care plan. In addition, 42% never/rarely received information relevant to their age, and only 54% reported that healthcare professionals definitely checked their understanding of the information provided. AYAs attending YCS were more likely to report age-appropriate treatment settings, information provision, and emotional support. While care experiences were generally positive for most AYAs, attending YCS was associated with better communication and supportive care experiences. As only a third of the AYAs surveyed attended these services, efforts are needed to increase AYA access to YCS.
Publisher: Mary Ann Liebert Inc
Date: 03-2017
Abstract: To assess what is currently known about unmet needs and care experiences of adolescents and young adults (AYAs) with cancer, identify gaps in the research literature, and highlight potential areas for improvement in future research. Medline, PsycINFO, CINAHL, and EMBASE databases were searched to identify relevant studies from 1990 to July 2015. Eligible articles included self-reported care experiences or unmet needs of cancer patients aged between 15 and 30 years in the period between symptom onset and 2 years post-treatment. Qualitative and quantitative designs were included. Forty-five articles from 39 studies (23 qualitative, 12 quantitative, and 4 mixed methods) were rated as "adequate" or "good" quality and reviewed. The majority included any cancer diagnoses and none was longitudinal. There was considerable variation in age ranges and time since diagnosis between studies. Only two studies used standardized survey tools, with both tools validated on adult populations. The most common areas assessed for care experiences and needs were information/communication and fertility. In addition, care experience studies commonly examined clinical expertise and age-appropriate settings, while unmet needs studies reported on emotional support and peer interaction. Findings highlight the need for age-appropriate information and treatment facilities, access to emotional support services, and contact with peers. Fertility information and services are a priority issue for this group. Future research would benefit from a consistent definition of the AYA age range, increased used of standardized scales validated with this population, and longitudinal designs to assess changes over time.
Publisher: Wiley
Date: 16-09-2019
DOI: 10.1002/PBC.27991
Abstract: This review draws on the experience of adolescent and young adult (AYA) cancer clinicians from Australia, the United States, and the United Kingdom to summarize common aspects of models of care implemented in their countries. The principles underpinning these models include patient- and family-focused care informed by an understanding of normal AYA development, enhancing existing adult or pediatric cancer services to meet the needs of AYA, and promoting collaboration between pediatric and adult oncologists. Common elements of AYA cancer care include establishing an AYA multidisciplinary team that integrates medical and psychosocial care, efforts to centralize complex care, providing access and equity for all AYA, promoting clinical trials, and helping facilitate transition to healthy survivorship. Several organizational approaches are described, noting that local program development depends on resources, infrastructure, and assessment of unmet needs within the region. The development of national networks provides opportunities for shared learning and approaches to evaluation.
Publisher: Wiley
Date: 03-06-2021
DOI: 10.1002/PON.5740
Abstract: 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 redictors of social functioning? and (3) What associated factors redictors of social functioning are modifiable and amenable to intervention? 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 redictive of social functioning and/or qualitatively assessed young people's perceptions of factors related to their social functioning and (3) was peer‐reviewed ublished in English. 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. 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.
Publisher: Mary Ann Liebert Inc
Date: 09-2016
Abstract: In Australia and New Zealand, there has not been a national systematic development of oncofertility services for cancer patients of reproductive age although many cancer and fertility centers have independently developed services. A number of barriers exist to the development of these services, including a lack of clear referral pathways, a lack of communication between clinicians and patients about fertility preservation, differences in the knowledge base of clinicians about the risk of cancer treatment causing infertility and fertility preservation options, a lack of national health insurance funding covering all aspects of fertility preservation, and storage costs and cultural, religious, and ethical barriers. The development of strategies to overcome these barriers is a high priority for oncofertility care to ensure that equitable access to the best standard of care is available for all patients. The FUTuRE Fertility Research Group led a collaborative consultation process with the Australasian Oncofertility Consumer group and oncofertility specialists to explore consumers' experiences of oncofertility care. Consumers participated in qualitative focus group meetings to define and develop a model of consumer driven or informed "gold standard oncofertility care" with the aim of putting together a Charter that specifically described this. The finalized Australasian Oncofertility Consortium Charter documents eight key elements of gold standard oncofertility care that will be used to monitor the implementation of oncofertility services nationally, to ensure that these key elements are incorporated into standard practice over time.
Publisher: Springer Science and Business Media LLC
Date: 21-09-2019
DOI: 10.1007/S00520-019-05020-8
Abstract: The use of high-dose chemotherapy and radiotherapy combined with haematopoietic stem cell transplantation (HSCT) may negatively affect a woman's reproductive potential. Reproductive outcomes such as infertility are a major concern for women who undergo treatment for a haematological cancer diagnosis. This systematic review and meta-analysis explores reproductive outcomes following a haematological cancer requiring HSCT. Electronic databases were searched to identify studies that reported on reproductive outcomes after treatment for a haematological cancer diagnosis. Studies were included that reported on pregnancy and reproductive outcomes following HSCT for a haematological malignancy. The meta-analysis included 14 studies, collectively involving 744 female patients. The subgroup analysis showed an overall pooled estimated pregnancy rate, for autologous or allogeneic HSCT recipients, of 22.7% (n = 438). There were 25% (n = 240) of women who became pregnant after autologous HSCT compared with 22% (n = 198) who subsequently became pregnant following allogeneic HSCT. This meta-analysis reflects low pregnancy rates for cancer survivors desiring a family. However, live births are improving over time with new technology and novel therapies. Hence, female cancer patients should be offered timely discussions, counselling and education around fertility preservation options prior to starting treatment with gonadotoxic therapy.
Publisher: Wiley
Date: 20-11-2019
DOI: 10.1002/PON.4927
Abstract: 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. 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. 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. 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.
Publisher: Wiley
Date: 16-07-2019
DOI: 10.1002/PBC.27922
Abstract: Maintaining a healthy lifestyle can protect adolescent survivors of pediatric cancer against chronic diseases such as obesity and cardiovascular disease. In this study, we examined the attitudes of adolescent survivors of pediatric cancer and their parents toward improving lifestyle behaviors after cancer treatment, including their preferences for intervention delivery and perceived barriers and benefits to healthy eating and exercise. We recruited adolescent survivors of childhood cancer aged 11-19 years and their parents, from two hospitals. Participants completed a questionnaire via mail or at routine oncology clinic visits. Thirty-three adolescents (response rate 39%, mean age 15, 61% male) and 32 parents (representing 30 parent-child dyads) participated. Parents were significantly more interested in having their child participate in a lifestyle intervention than adolescents (41% of adolescents and 72% of parents, P = .012). Both groups preferred that the survivor receive lifestyle support face to face rather than online. Adolescents preferred to involve their friends (39% of adolescents and 19% of parents) whereas parents preferred to involve the family in a lifestyle intervention (15% of adolescents and 47% of parents, P = .006). Adolescents and their parents perceived a dislike of the taste of fruits and vegetables, fatigue, lack of motivation, and fear of injury as barriers to change. They perceived that keeping healthy and having more energy were benefits to participation. Participants indicated that interventions that provide face-to-face personal training and dietary education at a local gym would be well accepted. Adolescents who have had cancer in childhood have a preference for face-to-face contact with health professionals to overcome the barriers to participation in a lifestyle intervention.
Publisher: JMIR Publications Inc.
Date: 29-08-2018
DOI: 10.2196/RESPROT.8886
Publisher: Mary Ann Liebert Inc
Date: 10-2022
Publisher: Wiley
Date: 21-03-2019
DOI: 10.1111/AOGS.13562
Abstract: 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.
Publisher: Elsevier BV
Date: 12-2018
DOI: 10.1016/J.JTHO.2018.08.2020
Abstract: Primary lung cancer is extremely rare in children. It often presents with metastatic disease and carries a poor prognosis. Adenocarcinoma is the most common type of bronchogenic carcinoma in children and adults. Our aim was to systematically review the presenting features, approach to diagnosis and management, as well as the outcomes of primary pediatric adenocarcinoma of the lung. This systematic review was prospectively registered with PROSPERO. The following databases were searched: Medline, Embase, Web of Science, and Scopus for English language cases of primary pediatric adenocarcinoma of the lung. Forty-eight studies were included, comprising 62 patients with adenocarcinoma and 21 cases of adenocarcinoma in situ. Presenting features were nonspecific, with cough and dyspnea the main symptoms at diagnosis. The majority of patients with adenocarcinoma had metastatic disease at diagnosis. Surgery was the most common form of management. More than half the patients with adenocarcinoma had died at final follow-up, whereas 5 of 21 with adenocarcinoma in situ died. Medical management did not improve outcomes, except for two ALK receptor tyrosine kinase (ALK)-rearranged adenocarcinomas that responded to ALK inhibitor therapy alone. Primary pediatric adenocarcinoma of the lung is a rare entity which often presents with metastatic disease and portends a poor prognosis. Surgery is associated with disease-free status, although new agents such as ALK-inhibitors are able to prolong life without surgical management.
Publisher: American Society of Hematology
Date: 20-12-2021
DOI: 10.1182/BLOODADVANCES.2021005576
Abstract: Pediatric regimens have improved outcomes in adolescent and young adult (AYA) acute lymphoblastic leukemia (ALL). However, results remain inferior to children with ALL. The Australasian Leukaemia and Lymphoma Group (ALLG) ALL06 study (anzctr.org.au/ACTRN12611000814976) was designed to assess whether a pediatric ALL regimen (Australian and New Zealand Children’s Haematology and Oncology Group [ANZCHOG] Study 8) could be administered to patients aged 15 to 39 years in a comparable time frame to children as assessed by the proportion of patients completing induction/consolidation and commencing the next phase of therapy (protocol M or high-risk [HR] treatment) by day 94. Minimal residual disease (MRD) response stratified patients to HR treatment and transplantation. From 2012 to 2018, a total of 86 patients were enrolled 82 were eligible. Median age was 22 years (range, 16-38 years). Induction/consolidation was equally deliverable in ALL06 as in Study 8. In ALL06, 41.5% (95% confidence interval [CI], 30.7-52.9) commenced protocol M or HR therapy by day 94 vs 39.3% in Study 8 (P = .77). Median time to protocol M/HR treatment was 96 days (interquartile range, 87.5-103 days) in ALL06 vs 98 days in Study 8 (P = .80). Induction mortality was 3.6%. With a median follow-up of 44 months (1-96 months), estimated 3-year disease-free survival was 72.8% (95% CI, 62.8-82.7), and estimated 3-year overall survival was 74.9% (95% CI, 65.3-84.5). End induction/consolidation MRD negativity rate was 58.6%. Body mass index ≥30 kg/m2 and day 79 MRD positivity were associated with poorer disease-free survival and overall survival. Pediatric therapy was safe and as deliverable in AYA patients as in children with ALL. Intolerance of pediatric ALL induction/consolidation is not a major contributor to inferior outcomes in AYA ALL.
No related organisations have been discovered for Antoinette Anazodo.
Start Date: 01-2019
End Date: 10-2022
Amount: $369,960.00
Funder: Australian Research Council
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