Background
Despite international evidence about fertility preservation (FP), several barriers still prevent the implementation of equitable FP practice. Currently, oncofertility competencies do not ...exist. The aim of this study was to develop an oncofertility competency framework that defines the key components of oncofertility care, develops a model for prioritizing service development, and defines the roles that health care professionals (HCPs) play.
Materials and Method
A quantitative modified Delphi methodology was used to conduct two rounds of an electronic survey, querying and synthesizing opinions about statements regarding oncofertility care with HCPs and patient and family advocacy groups (PFAs) from 16 countries (12 high and 4 middle income). Statements included the roles of HCPs and priorities for service development care across ten domains (communication, oncofertility decision aids, age‐appropriate care, referral pathways, documentation, oncofertility training, reproductive survivorship care and fertility‐related psychosocial support, supportive care, and ethical frameworks) that represent 33 different elements of care.
Results
The first questionnaire was completed by 457 participants (332 HCPs and 125 PFAs). One hundred and thirty‐eight participants completed the second questionnaire (122 HCPs and 16 PFAs). Consensus was agreed on 108 oncofertility competencies and the roles HCPs should play in oncofertility care. A three‐tier service development model is proposed, with gradual implementation of different components of care. A total of 92.8% of the 108 agreed competencies also had agreement between high and middle income participants.
Conclusion
FP guidelines establish best practice but do not consider the skills and requirements to implement these guidelines. The competency framework gives HCPs and services a structure for the training of HCPs and implementation of care, as well as defining a model for prioritizing oncofertility service development.
Implications for Practice
Despite international evidence about fertility preservation (FP), several barriers still prevent the implementation of equitable FP practice. The competency framework gives 108 competencies that will allow health care professionals (HCPs) and services a structure for the development of oncofertility care, as well as define the role HCPs play to provide care and support. The framework also proposes a three‐tier oncofertility service development model which prioritizes the development of components of oncofertility care into essential, enhanced, and expert services, giving clear recommendations for service development. The competency framework will enhance the implementation of FP guidelines, improving the equitable access to medical and psychological oncofertility care.
Despite the available fertility preservation guidelines, barriers still exist that hinder the implementation of oncofertility practice. This article reports an oncofertility framework that defines the key components of oncofertility care, including a model for service development and the role of health care professionals across specialities.
Proliferative vitreoretinopathy (PVR) is a known complication of retinal detachment surgery. It has been postulated that the establishment of PVR involves inflammatory and ischaemic processes. ...Surgical and clinical risk factors contribute to making certain patients more vulnerable to developing PVR. The objective of this systematic review is to identify and appraise the evidence on clinical and surgical risk factors and their utility in predicting the occurrence or worsening of PVR post-surgery.
Electronic databases and grey literature will be searched dating from 1980. Studies will be eligible if they include patients that underwent retinal reattachment surgery for rhegmatogenous retinal detachment (RRD), with and without PVR, and where risk factors were measured before or during surgery. Screening, data extraction and quality assessment will be performed independently by two reviewers using pre-defined criteria. Should any models be identified, we will liaise with the Cochrane prognostic group to help define the most appropriate quality assessment criteria based on the PROBLAST tool which is in development. All findings will be tabulated and narratively synthesised. Studies presenting models or adjusted data will likely be more informative than studies reporting unadjusted results for a single risk factor. When clinically and methodologically appropriate, random effects meta-analysis will be performed.
This review will systematically and comprehensively retrieve evidence to evaluate the clinical and surgical risk factors associated with PVR. The identified evidence may aid standardisation of clinical practice and more effective management for improving patient outcomes following RRD surgery and will provide a clear reference point for vitreoretinal surgeons.
PROSPERO CRD42016035848.
Black race and Hispanic ethnicity are associated with higher mortality among patients with SCID who undergo HCT. We hypothesized that Black and Hispanic patients have a higher incidence of infection ...pre-transplant and greater age at treatment, and that newborn screening (NBS) could substantially narrow these disparities.
Patients with SCID who received HCT between 1982–2020 at one of 33 North American institutions in the Primary Immune Deficiency Treatment Consortium (PIDTC) were included. The probability of survival was estimated using the Kaplan-Meier method. Cox proportional hazards regression models were used for multivariable analysis. The effect of NBS on disparities was evaluated by performing stratified analyses based on the trigger for diagnosis. Changes in racial/ethnic disparities were assessed over time.
Of 925 patients included, 52% were non-Hispanic White, 22% were Hispanic, and 10% were Black. Genotypes varied by race and ethnicity as shown in Table 1. Overall survival (OS) among Black patients who received a transplant from donors other than matched siblings was significantly lower compared to non-Hispanic White patients (aHR 2.43, 95%CI 1.62, 3.65) after accounting for age, conditioning, donor, genotype, infection status, and year of HCT. OS among Hispanic patients was also lower (aHR 1.34, 95%CI 0.94, 1.90), but did not reach statistical significance (Figure 1). Display omitted Thirty-nine percent of both Black and Hispanic patients had an active infection at HCT compared to 34% of non-Hispanic White patients (p = 0.52). There were no racial/ethnic differences in age at treatment or baseline infection among those diagnosed by NBS, whereas disparities were noted among those diagnosed by family history (White: 57 days, Hispanic: 95 days, Black: 99 days; p = 0.02). When evaluated by treatment era, racial/ethnic disparities in age at treatment and baseline infection resolved in the modern era (after 2010).Table 1Frequency of SCID genotypes by Race and Ethnicity.GenotypeTotal N = 925NH White N = 477Hispanic N = 201Black N = 96Asian/PI N = 43Nat. American N = 42ADA55 (8.5)33 (10.0)9 (6.5)7 (10.6)0 (0.0)2 (6.9)CD3 delta10 (1.6)7 (2.1)0 (0.0)0 (0.0)0 (0.0)0 (0.0)DCLRE1C39 (6.1)11 (3.3)5 (3.6)0 (0.0)3 (8.6)16 (55.2)IL2RG274 (42.5)157 (47.4)41 (29.5)41 (62.1)21 (60.0)4 (13.8)IL7R67 (10.4)26 (7.9)31 (22.3)3 (4.5)1 (2.9)1 (3.4)JAK340 (6.2)19 (5.7)10 (7.2)8 (12.1)2 (5.7)0 (0.0)RAG180 (12.4)41 (12.4)17 (12.2)6 (9.1)3 (8.6)6 (20.7)RAG235 (5.4)10 (3.0)16 (11.5)0 (0.0)2 (5.7)0 (0.0)RMRP (CHH)13 (2.0)8 (2.4)2 (1.4)0 (0.0)1 (2.9)0 (0.0)Other/Unknown2811466230813
Black patients with SCID had a more than two-fold hazard of death compared to non-Hispanic White patients, even after accounting for age and infection status. Hispanic patients also demonstrated higher mortality, but this difference was not statistically significant. Disparities across all races and ethnicities in age at treatment and baseline infection were not noted among those diagnosed in the modern era.
The physical, emotional, and financial consequences of engaging in risky sexual behavior can be extremely high. This paper explores the relations between the Five Factor Model (FFM) of personality ...and a variety of risky sexual behaviors using a community sample of 481 individuals who are part of an ongoing longitudinal study. More specifically, we examined the relations between the five major personality domains, as well as the 30 specific facets, and six risky sexual behaviors including number of partners, the use of drugs or alcohol before or during sex, number of sexual acts without using a condom, giving birth at an early age, sex outside one's primary relationship, and early sexual initiation. The results suggest that personality can make a valuable contribution to our understanding of several risky sexual behaviors. In particular, the domains of low Agreeableness, low Openness to Experience, and high Extraversion were significantly related to multiple high risk sexual behaviors. In addition, several specific personality traits made significant contributions (e.g., high gregariousness, high excitement seeking, low openness to fantasy, low trust, and low straightforwardness).
Narcolepsy and idiopathic hypersomnia are chronic conditions that negatively affect alertness, mental and physical energy, functioning, and quality of life (QoL). Calcium, magnesium, potassium, and ...sodium oxybates (low-sodium oxybate; LXB) is an oxybate formulation with 92% less sodium than sodium oxybate (SXB; a treatment for narcolepsy) and the same active moiety. LXB is approved in the US for treatment of cataplexy or excessive daytime sleepiness (EDS) in patients 7 years of age or older with narcolepsy, and idiopathic hypersomnia in adults. In Phase 3 clinical trials, LXB exhibited a safety profile consistent with that of SXB in narcolepsy. Besides continued efficacy in treating symptoms, potential benefits of long-term LXB treatment include flexible optimization of dosing and regimen, improvement of QoL and functioning, weight loss, and (relative to SXB in narcolepsy) health benefits of reduced sodium content. Dosing of LXB is twice nightly (for narcolepsy) or once or twice nightly (for idiopathic hypersomnia) based on patient characteristics and response, and individualized titration can be leveraged over the long term as a patient's life circumstances change. Patients with narcolepsy transitioning from SXB initiate LXB at the same dose, and most patients require no further changes to achieve similar efficacy and tolerability. Improvements in functioning and QoL with LXB treatment could have cascading positive effects in multiple domains, particularly in younger patients. In clinical trials, LXB was associated with weight loss in both narcolepsy (in which obesity is a well-established comorbidity) and idiopathic hypersomnia, only occasionally leading participants to be underweight. As both narcolepsy and idiopathic hypersomnia are associated with increased risk of cardiometabolic and cardiovascular comorbidities, limiting medication-related sodium intake with LXB may have significant health benefits, although this has not yet been verified prospectively due to the prolonged follow-up required. LXB is a promising long-term treatment for narcolepsy and idiopathic hypersomnia. Plain Language Summary: Narcolepsy and idiopathic hypersomnia are disorders that make people feel very sleepy. Low-sodium oxybate (LXB) is a medicine for these disorders. Doctors think LXB works on parts of the brain that keep people awake. LXB may quiet those brain parts down at night by reducing their electrical activity, which helps people sleep better. LXB wears off by the morning, so people can wake up normally and feel more alert the next day. LXB has less sodium (which is part of salt) than a medicine called sodium oxybate. Sodium oxybate has been used for narcolepsy for more than 20 years. LXB has several benefits. First, LXB may be healthier than medicines that contain a lot of sodium, such as a high-sodium oxybate. This is because sodium can increase blood pressure and risk of heart disease. Second, LXB can be taken twice each night for narcolepsy, or once or twice each night for idiopathic hypersomnia. This depends on a person's lifestyle, how well the medicine is working, and side effects. Third, people taking LXB are more able to work and do other activities and have better quality of life. Finally, people taking LXB may lose weight. This can help overweight or obese people. Keywords: cardiovascular, dosing, LXB, hypersomnolence, quality of life, weight loss
An infectious origin for pediatric Hodgkin lymphoma (HL) has long been suspected and Epstein‐Barr virus (EBV) has been implicated in a subset of cases. Increased HL incidence in children with ...congenital and acquired immunodeficiencies, consistent associations between autoimmune diseases and adult HL and genome‐wide association and other genetic studies together suggest immune dysregulation is involved in lymphomagenesis. Here, healthy control children identified by random digit dialing were matched on sex, race/ethnicity and age to HL diagnosed in 1989–2003 at 0–14 years at Children's Oncology Group institutions. Parents of 517 cases and 784 controls completed telephone interviews, including items regarding medical histories. Tumor EBV status was determined for 355 cases. Using conditional logistic regression, we calculated odds ratios (ORs) and 95% confidence intervals (CIs) for risk of HL. Cases were more likely to have had an infection >1 year prior to HL diagnosis (OR = 1.69, 95% CI: 0.98–2.91); case siblings were also more likely to have had a prior infection (OR = 2.04, 95% CI: 1.01–4.14). Parental history of autoimmunity associated with increased EBV+ HL risk (OR = 2.97, 95% CI: 1.34–6.58), while having a parent (OR = 1.47, 95% CI: 1.01–2.14) or sibling (OR = 1.62, 95% CI: 1.11–2.36) with an allergy was associated with EBV − HL. These results may indicate true increased risk for infections and increased risk with family history of autoimmune and allergic conditions that varies by tumor EBV status, or they may be attributable to inaccurate recall. In addition to employing biomarkers to confirm the role of immune‐modulating conditions in pediatric HL, future studies should focus on family based designs.
What's new?
Although infectious disease has long been a suspected cause of Hodgkin lymphoma (HL), the etiology of pediatric and adolescent HL remains little understood. Here, 517 cases of pediatric and adolescent HL diagnosed from 1989 to 2003 were investigated for an infectious origin, both in the presence and absence of tumor Epstein‐Barr virus (EBV). While no specific infectious agents were implicated, HL cases had an increased likelihood of infection more than one year prior to diagnosis. Distinct patterns between family history of autoimmunity and allergy and HL risk by EBV status emphasize the need for comprehensive family‐based studies.
To describe protocol adaptations to the Fibromyalgia Integrative Training for Teens (FIT Teens) randomized controlled trial in response to the COVID-19 pandemic. The overarching aims of the FIT Teens ...multi-site 3-arm comparative effectiveness trial are to assess whether a specialized neuromuscular exercise training intervention combined with cognitive-behavioral therapy (CBT) is superior to CBT alone or graded aerobic exercise alone.
The trial was originally designed as an in-person, group-based treatment with assessments at baseline, mid- and post-treatment, and four follow-up time points. The original study design and methodology was maintained with specific modifications to screening, consenting, assessments, and group-based treatments to be delivered in remote (telehealth) format in response to COVID-19 restrictions.
Study enrollment was paused in March 2020 for five months to revise operations manuals, pilot remote treatment sessions for accuracy and fidelity, complete programming of REDCap assent/consent and assessment materials, train study staff for new procedures and obtain regulatory approvals. The trial was relaunched and has been successfully implemented in remote format since July 2020. Trial metrics thus far demonstrate a consistent rate of enrollment, strong attendance at remote treatment sessions, high retention rates and high treatment fidelity after protocol adaptations were implemented.
Preliminary findings indicate that FIT Teens protocol adaptations from in-person to remote are feasible and allowed for sustained enrollment, retention, and treatment fidelity comparable to the in-person format. Methodologic and statistical considerations resulting from the adaptations are discussed as well as implications for interpretation of results upon completion of the trial.
NCT 03268421.
Cardiovascular disease (CVD, i.e., disease of the heart and blood vessels) is a major cause of death globally. Current assessment tools use either clinical or non-clinical factors alone or in ...combination to assess CVD risk. The aim of this review was to critically appraise, compare, and summarize existing non-clinically based tools for assessing CVD risk factors in underserved young adult (18-34-year-old) populations. Two online electronic databases-PubMed and Scopus-were searched to identify existing risk assessment tools, using a combination of CVD-related keywords. The search was limited to articles available in English only and published between January 2008 and January 2019. Of the 10,383 studies initially identified, 67 were eligible. In total, 5 out of the 67 articles assessed CVD risk in underserved young adult populations. A total of 21 distinct CVD risk assessment tools were identified; six of these did not require clinical or laboratory data in their estimation (i.e., non-clinical). The main non-clinically based tools identified were the Heart Disease Fact Questionnaire, the Health Beliefs Related to CVD-Perception measure, the Healthy Eating Opinion Survey, the Perception of Risk of Heart Disease Scale, and the WHO STEPwise approach to chronic disease factor surveillance (i.e., the STEPS instrument).
Purpose
The pathobiology of alimentary tract (AT) mucositis is complex and there is limited information about the events which lead to the mucosal damage that occurs during cancer treatment. Various ...transcription factors and proinflammatory cytokines are thought to play important roles in pathogenesis of mucositis. The aim of this study was to determine the expression of nuclear factor-κB (NF-κB), tumor necrosis factor (TNF) and interleukins-1β (IL-1β) and -6 (IL-6) in the AT following the administration of the chemotherapeutic agent irinotecan.
Methods
Eighty-one female dark Agouti rats were assigned to either control or experimental groups according to a specific time point. Following administration of irinotecan, rats were monitored for the development of diarrhoea. The rats were killed at times ranging from 30 min to 72 h after administration of irinotecan. Oral mucosa, jejunum and colon were collected and standard immunohistochemical techniques were used to identify NF-κB, TNF, IL-1β and IL-6 within the tissues. Sections were also stained with haematoxylin and eosin for histological examination.
Results
Irinotecan caused mild to moderate diarrhoea in a proportion of the rats that received the drug. Altered histological features of all tissues from rats administered irinotecan were observed which included epithelial atrophy in the oral mucosa, reduction of villus height and crypt length in the jejunum and a reduction in crypt length in the colon. Tissue staining for NF-κB, TNF and IL-1β and IL-6 peaked at between 2 and 12 h in the tissues examined.
Conclusions
This is the first study to demonstrate histological and immunohistochemical evidence of changes occurring concurrently in different sites of the AT following chemotherapy. The results of the study provide further evidence for the role of NF-κB and associated pro-inflammatory cytokines in the pathobiology of AT mucositis. The presence of these factors in tissues from different sites of the AT also suggests that there may be a common pathway along the entire AT causing mucositis following irinotecan administration.
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