KEYWORDS: African American, quality of life, cancer survivors, breast cancer, prostate cancer, literature review, integrative research reviews. D espite advances in cancer care and increases in rates of survival over the past decades, cancer is second only to heart disease as the leading cause of death in the United States. 1 African Americans have higher incidence and/or mortality rates and lower rates of survival for many cancers when compared with other racial/ethnic groups. For example, African American men have a 22% higher incidence rate and a 40% higher mortality rate from all cancers combined, compared with Caucasian men.2 African American women, despite having a lower incidence rate, have higher mortality rates from breast cancer when compared with Caucasian women. Although the 5-year survival rate for all cancer types combined has improved for African Americans over the past few decades (56% for those diagnosed before age 45 years, and 44% for those diagnosed at age 75 years and older), this rate continues to lag behind the comparable survival rate for Caucasians. 2 As originally defined by the National Coalition of Cancer Survivorship, an individual is considered a cancer survivor from the time of diagnosis through the Address for reprints:
IntroductionA critical barrier to outcome assessment in gender-affirming healthcare is the lack of a specific patient-reported outcome measure (PROM). This phase I protocol describes an international collaboration between investigators in Canada, Denmark, the Netherlands and the USA who have coalesced to develop a new PROM (ie, the GENDER-Q) to evaluate outcomes of psychological, hormonal and surgical gender-affirming treatments.Methods and analysisThis phase I study uses an interpretive description approach. Participants aged 16 years and older seeking any form of gender-affirming treatments in centres located in Canada, Denmark, the Netherlands and the USA will be invited to take part in qualitative interviews. Participants will review BREAST-Q and FACE-Q scales hypothesised to contain content relevant to specific gender-affirming treatments. Interviews will elicit new concepts for additional scale development. Each interview will be digitally recorded, transcribed and coded. The main outcome of this phase I study will be the development of a conceptual framework and set of scales to measure outcomes important to evaluating gender-affirming treatments. To this end, analysis will be used to add/drop/revise items of existing scales to achieve content validity. For new concepts, coding will assign top-level domains and themes/subthemes to participant quotes. Codes will be used to develop an item pool to inform scale development. Draft scales will be shown to transgender and gender diverse persons and experts to obtain feedback that will be used to refine and finalise the scales. The field-test version of the GENDER-Q will be translated by following rigorous methods to prepare for the international field-test study.Ethics and disseminationThis study is coordinated at McMaster University (Canada). Ethics board approval was received from the Hamilton Integrated Ethics Board (Canada), the Medical Ethical Committee at VUmc (The Netherlands) and Advarra (USA). Findings will be published in peer-reviewed journals and presented at national and international conferences and meetings.
Objective The COVID-19 pandemic has had detrimental effects on mental health. Literature on the impact on individuals with eating disorders is slowly emerging. While outpatient eating disorder services in Canada have attempted to transition to virtual care, guidelines related to optimal virtual care in this field are lacking. As such, the objective of our Canadian Consensus Panel was to develop clinical practice guidelines related to the provision of virtual care for children, adolescents, and emerging adults living with an eating disorder, as well as their caregivers, during the COVID-19 pandemic and beyond. Methods Using scoping review methodology (with literature in databases from 2000 to 2020 and grey literature from 2010 to 2020), the Grading of Recommendations, Assessment, Development, and Evaluation system, the Appraisal of Guidelines, Research and Evaluation tool, and a panel of diverse stakeholders from across Canada, we developed high quality treatment guidelines that are focused on virtual interventions for children, adolescents, and emerging adults with eating disorders, and their caregivers. Results Strong recommendations were supported specifically in favour of in-person medical evaluation when necessary for children, adolescents, and emerging adults, and that equity-seeking groups and marginalized youth should be provided equal access to treatment. For children and adolescents, weak recommendations were supported for telehealth family-based treatment (FBT) and online guided parental self-help FBT. For emerging adults, internet cognitive-behavioural therapy (CBT)-based guided self-help was strongly recommended. Weak recommendations for emerging adults included CBT-based group internet interventions as treatment adjuncts, internet-based relapse prevention Maudsley Model of Anorexia Nervosa Treatment for Adults (MANTRA) guided self-help, telehealth relapse prevention using MANTRA, and guided CBT-based smartphone apps as treatment adjuncts. For caregivers of children and adolescents, weak recommendations were supported for virtual parent meal support training, and moderated online caregiver forums and support groups. For caregivers of emerging adults, guided parental self-help CBT was strongly recommended, and unguided caregiver psychoeducation self-help was weakly recommended. Conclusions Several gaps for future work were identified including the impact of sex, gender, race, and socioeconomic status on virtual care among children, adolescents, and emerging adults with eating disorders, as well as research on more intensive services, such as virtual day hospitals.
Little has been published about the co-occurrence of gender dysphoria (GD) and eating disorders (ED) in adults, with no cases described in the adolescent population. The emphasis on body shape in both conditions suggests that there may be some overlap in symptomatology. We report two adolescent cases initially diagnosed with anorexia nervosa who later met criteria for GD. The drive for thinness for the 16-year-old male was associated with a wish to achieve a feminine physique whereas there was an emphasis for stunted breast growth and a desire for muscularity in the 13-year-old female. Complexities in presentation, evolution of symptoms over time, and the treatment of the two cases are discussed. Clinicians should inquire about sexual issues in the presentation of ED and should monitor for symptoms of GD, not only at initial presentation, but throughout treatment, especially as weight gain progresses.
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