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Population-wide skin cancer screening is not currently recommended in most countries. Instead, most clinical guidelines incorporate risk-based recommendations for skin checks, despite limited evidence around implementation and adherence to recommendations in practice. We aimed to determine adherence to personal risk-tailored melanoma skin check schedules and explore reasons influencing adherence. Patients (with/without a previous melanoma) attending tertiary dermatology clinics at the Melanoma Institute Australia, Sydney, Australia, were invited to complete a melanoma risk assessment questionnaire via iPad and provided with personal risk information alongside a risk-tailored skin check schedule. Data were collected from the risk tool, clinician-recorded data on schedule deviations, and appointment booking system. Post-consultation, we conducted semi-structured interviews with patients and clinic staff. We used a convergent segregated mixed methods approach for analysis. Interviews were audio recorded, transcribed and data were analysed thematically. Participant data were analysed from clinic records (n = 247) and interviews (n = 29 patients, 11 staff). Overall, there was 62% adherence to risk-tailored skin check schedules. In cases of non-adherence, skin checks tended to occur more frequently than recommended. Decisions to deviate were similarly influenced by patients (44%) and clinicians (56%). Themes driving non-adherence among patients included anxiety and wanting autonomy around decision-making, and among clinicians included concerns around specific lesions and risk estimate accuracy. There was moderate adherence to a clinical service program of personal risk-tailored skin check recommendations. Further adherence may be gained by incorporating strategies to identify and assist patients with high levels of anxiety and supporting clinicians to communicate risk-based recommendations with patients.
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PURPOSE: The complexity of metastatic breast cancer, its rapidly evolving treatment, and the changing trajectory toward long-term survivorship create unique challenges for the provision of supportive care. The experiences of health professionals enacting supportive care in contexts of those living long-term with incurable cancer have received limited research attention. This qualitative study aimed to gain further insight into health professionals' experiences of supportive care in this context. METHOD: Semi-structured interviews were conducted via phone and online with 25 health and community-care professionals who support people living with metastatic breast cancer in Australia. A mix of sampling strategies was used. Thematic analysis was undertaken. Findings were interpreted through an ethics of care lens. RESULTS: Three key themes were identified. First, participants experienced supportive care as highly relational. Second, they encountered numerous moral and ethical dilemmas in enacting supportive care. Finally, enacting supportive care was complicated by fragmented and sporadic provision in a system in which supportive care is differentially valued across professions and settings. CONCLUSION: Findings draw attention to complexities in enacting supportive care in the context of metastatic breast cancer, with implications to patients and professionals. To improve the quality of care provided to patients and minimise the risk of professional burnout, greater attention is needed in supportive care guidelines to the ethical, moral, and emotional complexities experienced by professionals in this context. IMPLICATIONS FOR CANCER SURVIVORS: People living with metastatic breast cancer are a growing proportion of cancer survivors. The knowledge gained through this study may help professionals to better meet the supportive care needs of people living with metastatic breast cancer, a treatable but not curable condition.
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The development of new vaccines against the SARS-CoV-2 virus in response to the COVID-19 pandemic represents a milestone in the history of public health. However, due to the rapid development and short duration of these new vaccines, the full spectrum of side effects is not yet known. A 76-year-old man presented to the clinic for follow-up after being discharged from the emergency department for hyperglycemia. His medical history included well-controlled type 2 diabetes for two years, hypertension, and hyperlipidemia. He had recently noticed high home blood glucose readings over 400 mg/dL, and his hemoglobin A1c (mean 90-day glucose level) had increased from 6.5% to 12.6%. Notably, the patient reported having excellent health behaviors, including daily exercise, a closely monitored healthy diet, and regular blood glucose testing. After extensive endocrinology workup, the rapid change in blood glucose was thought to be due to his having recently received the COVID-19 messenger RNA (mRNA) vaccine. He was started on long- and short-acting insulin and a glucagon-like peptide-1 agonist (novel injectable type 2 diabetes medication), with improvement in blood glucose. He was tapered off all medications and remains on metformin 1,000 mg twice daily after one year.Whether the new COVID-19 mRNA vaccines directly incur hyperglycemia within certain groups of patients with diabetes is not known; thus, studies exploring the relationship between vaccine antigen binding and pancreatic function are needed.
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Melanoma , Biópsia de Linfonodo Sentinela , Linfonodo Sentinela , Humanos , Melanoma/patologia , Melanoma/cirurgia , Biópsia de Linfonodo Sentinela/métodos , Linfonodo Sentinela/patologia , Linfonodo Sentinela/cirurgia , Prognóstico , Medição de Risco , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/cirurgia , Estadiamento de Neoplasias , Gerenciamento Clínico , Internet , Metástase LinfáticaRESUMO
OBJECTIVES: This study explored potential quality measures to improve skin cancer management in primary care settings, and the barriers and facilitators associated with their implementation. DESIGN: Semistructured interviews and qualitative proforma surveys were conducted with skin cancer experts from a range of healthcare settings. Framework analysis was employed to identify key groups of quality measures within the domains of the Donabedian model of healthcare quality (structure, process, outcome). Interview and survey data were triangulated to identify common groups of quality measures, barriers and facilitators. PARTICIPANTS: We purposively recruited skin cancer experts from Australia and internationally with knowledge and experience in skin cancer management. The final sample consisted of 15 participants who had clinical or academic backgrounds. RESULTS: Participants unequivocally expressed the need for quality measures to guide skin cancer care. Ten groups of quality measures were identified: three groups related to the structural elements of care (eg, diagnostic tools), four related to the processes of care (eg, diagnostic process) and three related to outcomes of care (eg, treatment outcomes). Implementation barriers included clinician resistance, system inadequacies and external factors (eg, patient risk). Facilitators included incentives, education, agreed and feasible indicators and support and guidance. CONCLUSIONS: To service a growing population of skin cancer patients in Australia, the role of primary care needs to be more clearly specified, and its care providers supported and more engaged in quality improvement processes. Structure, process and outcome quality measures, derived from detailed guidance for primary care settings, can be used to track practitioner performance and facilitate ongoing improvement.
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Atenção Primária à Saúde , Pesquisa Qualitativa , Neoplasias Cutâneas , Humanos , Atenção Primária à Saúde/normas , Atenção Primária à Saúde/organização & administração , Neoplasias Cutâneas/terapia , Neoplasias Cutâneas/diagnóstico , Austrália , Feminino , Masculino , Atitude do Pessoal de Saúde , Qualidade da Assistência à Saúde , Entrevistas como Assunto , Melhoria de Qualidade , Pessoa de Meia-Idade , AdultoRESUMO
PURPOSE: We examined whether gender identity and sexual orientation were associated with seven health-related behaviours, and with co-occurrence and clustering of these behaviours among British adolescents. METHODS: Millennium Cohort Study (age 17 wave) provided data on the exposures, gender identity (male, female, genderqueer) and sexual orientation (heterosexual, bisexual, gay or lesbian, or other), and seven self-reported health-related behaviours (binge drinking, drug use, no consumption of breakfast, no consumption of fruits or vegetables, physical inactivity, poor sleep, and smoking or vaping). Poisson regressions examined associations between the exposures and single behaviours (reporting prevalence ratios (PRs)); and multinomial logistic regressions were used for behavioural cumulative co-occurrence score (reporting PRs). Cluster patterns were identified using Ward's agglomerative hierarchical cluster analysis while associations with cluster membership were performed using logistic regressions (reporting odds ratios (ORs)). RESULTS: Our sample included 6022 adolescents (55.4% female, 1.5% genderqueer, 11.6% non-heterosexual). Adolescents who identified as genderqueer had the highest prevalence of not eating breakfast (PR: 60.5% [95%CI 48.4-71.4]) and poor sleep (68.7% [95%CI 55.6-79.3]). Those who identified as bisexual had a higher PR of co-occurring behaviours (2.46 [95%CI 1.39-4.27]). Among the three clusters identified (1: Multiple risk behaviours; 2: Physical inactivity and binge drinking; 3: Poor diet and physical inactivity), adolescents who identified as genderqueer or other sexual orientation showed the highest prevalence in cluster 3. CONCLUSION: Gender and sexual minority British adolescents showed a higher prevalence of risky health-related behaviours, and higher risk of co-occurring behaviours. Physical inactivity and poor diet behaviours commonly clustered together for these groups.
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Alopecia is an undesirable side effect of cancer chemotherapy. The mitigation of alopecia is a desirable adjunct treatment for patients with cancer. FDA-cleared scalp cooling (SC) devices have been successfully used to prevent or reduce chemotherapy-induced alopecia (CIA). This paper provides an understanding of the implementation and value of the new Insurance-Based Billing Model used in the USA for SC and its benefits compared with the original self-pay model. This improved compensation change will result in all patients in need, including underserved and disadvantaged populations, receiving equitable healthcare by allowing access to this valuable supportive care technology.
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PURPOSE: This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC. METHODS: Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis. RESULTS: Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks. CONCLUSIONS: MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC. IMPLICATIONS FOR CANCER SURVIVORS: MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs.
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PURPOSE: For men with intermediate-risk prostate cancer treated with definitive therapy, the addition of androgen deprivation therapy (ADT) reduces the risk of distant metastasis and cancer-related mortality. However, the absolute benefit of ADT varies by baseline cancer risk. Estimates of prognosis have improved over time, and little is known about ADT decision making in the modern era. We sought to characterize variability and identify factors associated with intended ADT use within the Michigan Radiation Oncology Quality Consoritum (MROQC). MATERIALS AND METHODS: Patients with localized prostate cancer undergoing definitive radiation therapy were enrolled from June 9, 2020, to June 26, 2023 (n = 815). Prospective data were collected using standardized patient, physician, and physicist forms. Intended ADT use was prospectively defined and was the primary outcome. Associations with patient, tumor, and practice-related factors were tested with multivariable analyses. Random intercept modeling was used to estimate facility-level variability. RESULTS: Five hundred seventy patients across 26 facilities were enrolled with intermediate-risk disease. ADT was intended for 46% of men (n = 262/570), which differed by National Comprehensive Cancer Network favorable intermediate-risk (23.5%, n = 38/172) versus unfavorable intermediate-risk disease (56.3%, n = 224/398; P < .001). After adjusting for the statewide case mix, the predicted probability of intended ADT use varied significantly across facilities, ranging from 15.4% (95% CI, 5.4%-37.0%) to 71.7% (95% CI, 57.0%-82.9%), with P < .01. Multivariable analyses showed that grade group 3 (OR, 4.60 [3.20-6.67]), ≥50% positive cores (OR, 2.15 [1.43-3.25]), and prostate-specific antigen 10 to 20 (OR, 1.87 [1.24-2.84]) were associated with ADT use. Area under the curve was improved when incorporating MRI adverse features (0.76) or radiation treatment variables (0.76), but there remained significant facility-level heterogeneity in all models evaluated (P < .05). CONCLUSIONS: Within a state-wide consortium, there is substantial facility-level heterogeneity in intended ADT use for men with intermediate-risk prostate cancer. Future efforts are necessary to identify patients who will benefit most from ADT and to develop strategies to standardize appropriate use.
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Melanoma , Biópsia de Linfonodo Sentinela , Linfonodo Sentinela , Humanos , Melanoma/patologia , Melanoma/cirurgia , Biópsia de Linfonodo Sentinela/métodos , Linfonodo Sentinela/patologia , Linfonodo Sentinela/cirurgia , Medição de Risco , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/cirurgia , Internet , Prognóstico , Estadiamento de NeoplasiasRESUMO
OBJECTIVE: We investigated the association between sun protection behaviours and demographic and melanoma risk characteristics of patients attending Australian melanoma specialist clinics. This may assist in targeting and tailoring melanoma prevention patient education for people at high-risk and specific population subgroups. METHODS: A cross-sectional analysis of questionnaire data collected from participants attending the dermatology clinics at two major melanoma centres in Sydney, Australia between February 2021 and September 2023. The primary outcome was Sun Protection Habits (SPH) index (a summary score measured as habitual past month use of sunscreen, hats, sunglasses, a shirt with sleeves that covers the shoulders, limiting midday sun exposure and seeking shade, using a Likert scale). The primary analysis considered the SPH index and its component items scored as continuous. RESULTS: Data from 883 people were analysed. Factors associated with less frequent sun protection behaviours overall included male gender, no personal history of melanoma, lower perceived risk, lower calculated 10-year risk of developing melanoma, and no private health insurance. People aged >61 years reported lower use of sunscreen but higher use of hats and sleeved-shirts compared with people in the younger age group. There was no difference in overall sun protection behaviours according to family history of melanoma, country of birth or by lifetime melanoma risk among people without a personal history of melanoma. CONCLUSIONS: These findings highlight the potential for targeting high-risk individuals with less frequent use of sun protection for patient education, public health messaging and ultimately improving sun protection behaviours.
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Ghrelin is a stomach-derived hormone that increases feeding and is elevated in response to chronic psychosocial stressors. The effects of ghrelin on feeding are mediated by the binding of ghrelin to the growth hormone secretagogue receptor (GHSR), a receptor located in hypothalamic and extrahypothalamic regions important for regulating food intake and metabolic rate. The ability of ghrelin to enter the brain, however, seems to be restricted to circumventricular organs like the median eminence and the brainstem area postrema, whereas ghrelin does not readily enter other GHSR-expressing regions like the ventral tegmental area (VTA). Interestingly, social stressors result in increased blood-brain barrier permeability, and this could therefore facilitate the entry of ghrelin into the brain. To investigate this, we exposed mice to social defeat stress for 21â d and then peripherally injected a Cy5-labelled biologically active ghrelin analog. The results demonstrate that chronically stressed mice exhibit higher Cy5-ghrelin fluorescence in several hypothalamic regions in addition to the ARC, including the hippocampus and midbrain. Furthermore, Cy5-ghrelin injections resulted in increased FOS expression in regions associated with the reward system in chronically stressed mice. Further histologic analyses identified a reduction in the branching of hypothalamic astrocytes in the ARC-median eminence junction, suggesting increased blood-brain barrier permeability. These data support the hypothesis that during metabolically challenging conditions like chronic stress, ghrelin may be more able to cross the blood-brain barrier and diffuse throughout the brain to target GHSR-expressing brain regions away from circumventricular organs.
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Barreira Hematoencefálica , Encéfalo , Grelina , Camundongos Endogâmicos C57BL , Derrota Social , Estresse Psicológico , Animais , Grelina/metabolismo , Masculino , Estresse Psicológico/metabolismo , Encéfalo/metabolismo , Barreira Hematoencefálica/metabolismo , Barreira Hematoencefálica/efeitos dos fármacos , Camundongos , Proteínas Proto-Oncogênicas c-fos/metabolismo , Receptores de Grelina/metabolismoRESUMO
BACKGROUND: Predicting which patients with American Joint Committee on Cancer (AJCC) T1-T2 melanomas will have a positive sentinel lymph node (SLN) is challenging. Melanoma Institute Australia (MIA) developed an internationally validated SLN metastatic risk calculator. This study evaluated the nomogram's impact on T1-T2 melanoma patient management at MIA. METHODS: SLN biopsy (SLNB) rates were compared for the pre- and post-nomogram periods of 1 July 2018-30 June 2019 and 1 August 2020-31 July 2021, respectively. RESULTS: Overall, 850 patients were identified (pre-nomogram, 383; post-nomogram, 467). SLNB was performed in 29.0% of patients in the pre-nomogram group and 34.5% in the post-nomogram group (p = 0.091). The overall positivity rate was 16.2% in the pre-nomogram group and 14.9% in the post-nomogram group (p = 0.223). SLNB was performed less frequently in T1a melanoma patients in the pre-nomogram group (1.1%, n = 2/177) than in the post-nomogram group (8.6%, n = 17/198) [p ≤ 0.001]. This increase was particularly for melanomas with a risk score ≥ 5%, with an SLN positivity rate of 11.8% in the post-nomogram group (p = 0.004) compared with zero. For T1b melanomas with a risk score of > 10%, the SLNB rate was 40.0% (8/20) pre-nomogram and 75.0% (12/16) post-nomogram (p = 0.049). CONCLUSIONS: In this specialized center, the SLN risk calculator appears to influence practice for melanomas previously considered low risk for metastasis, with increased use of SLNB for T1a and higher-risk T1b melanomas. Further evaluation is required across broader practice settings. Melanoma management guidelines could be updated to incorporate the availability of nomograms to better select patients for SLNB than previous criteria.
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Melanoma , Nomogramas , Biópsia de Linfonodo Sentinela , Linfonodo Sentinela , Neoplasias Cutâneas , Humanos , Melanoma/patologia , Melanoma/cirurgia , Feminino , Masculino , Pessoa de Meia-Idade , Linfonodo Sentinela/patologia , Linfonodo Sentinela/cirurgia , Medição de Risco , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/cirurgia , Idoso , Seguimentos , Prognóstico , Adulto , Metástase Linfática , Estadiamento de Neoplasias , Estudos Retrospectivos , Idoso de 80 Anos ou maisRESUMO
OBJECTIVE: This study aimed to identify the clinical and growth parameters associated with retinopathy of prematurity (ROP) in infants with necrotizing enterocolitis (NEC) and spontaneous ileal perforation (SIP). STUDY DESIGN: We conducted a retrospective cohort study that compared clinical data before and after NEC/SIP onset in neonates, categorizing by any ROP and severe ROP (type 1/2) status. RESULTS: The analysis included 109 infants with surgical NEC/SIP. Sixty infants (60/109, 55%) were diagnosed with any ROP, 32/109 (29.3%) infants (22% type 1 and 7.3% type 2) with severe ROP. On univariate analysis, those with severe ROP (32/109, 39.5%) were of lower median gestational age (GA, 23.8 weeks [23.4, 24.6] vs. 27.3 [26.3, 29.0], p < 0.001), lower median birth weight (625 g [512, 710] vs. 935 [700, 1,180], p < 0.001) and experienced higher exposure to clinical chorioamnionitis (22.6 vs. 2.13%, p < 0.006), and later median onset of ROP diagnosis (63.0 days [47.0, 77.2] vs. 29.0 [19.0, 41.0], p < 0.001), received Penrose drain placement more commonly (19 [59.4%] vs. 16 [34.0%], p = 0.04), retained less residual small bowel (70.0 cm [63.1, 90.8] vs. 90.8 [72.0, 101], p = 0.007) following surgery, were exposed to higher FiO2 7 days after birth (p = 0.001), received ventilation longer and exposed to higher FiO2 at 2 weeks (p < 0.05) following NEC and developed acute kidney injury (AKI) more often (25 [86.2%] vs. 20 [46.5%], p = 0.002) than those without ROP. Those with severe ROP had lower length, weight for length, and head circumference z scores. In an adjusted Firth's logistic regression, GA (adjusted odds ratio [aOR] = 0.51, 95% confidence interval [CI]: [0.35, 0.76]) and diagnosis at later age (aOR = 1.08, 95% CI: [1.03, 1.13]) was shown to be significantly associated with any ROP. CONCLUSION: Infants who develop severe ROP following surgical NEC/SIP are likely to be younger, smaller, have been exposed to more O2, develop AKI, and grow poorly compared with those did not develop severe ROP. KEY POINTS: · Thirty percent of infants with NEC/SIP had severe ROP.. · Those with severe ROP had poor growth parameters before and after NEC/SIP.. · Risk factors based ROP prevention strategies are needed to have improved ophthalmic outcomes..
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INTRODUCTION: Adolescents and young adults are susceptible population when it comes to healthy eating and dietary behaviours. The increasing use of social media by this age group presents a unique opportunity to promote healthy eating habits. Social media has become a popular platform for promoting health interventions, particularly among young people. However, there is a lack of consensus on the effectiveness of social media interventions in this population. This mixed-method systematic review aims to synthesise the available evidence on the impact of social media interventions on healthy eating behaviours among young people, their qualitative views and user experiences, and the intervention characteristics, behaviour change theories and techniques used to promote healthy eating. METHODS AND ANALYSIS: We will conduct a comprehensive search of seven electronic databases, including ASSIA, Cochrane Library, Embase, MEDLINE, PsycINFO, Scopus and Web of Science. The search strategy will use a combination of Medical Subject Headings terms and keywords covering three domains: social media, eating behaviours and young people. The search will be limited to peer-reviewed published papers in any language, published from 2000. Three independent reviewers will screen studies based on predetermined eligibility criteria. Data will be extracted and analysed using a convergent segregated mixed-method approach. We will use random-effect meta-analysis or Synthesis Without Meta-analysis for quantitative data and thematic synthesis for qualitative data. Finally, narrative synthesis using concurrent triangulation will be used to bring together the results of the mixed-method data analysis to provide a comprehensive and integrated understanding of the impact and other features of social media interventions. This systematic review will adhere to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. ETHICS AND DISSEMINATION: Ethical approval is not required since this systematic review will not collect original data. The outcomes of this review will be shared through peer-reviewed publications and conference presentations and will contribute to the PhD thesis of the primary author. PROSPERO REGISTRATION NUMBER: CRD42023414476.
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Comportamento Alimentar , Mídias Sociais , Revisões Sistemáticas como Assunto , Humanos , Adolescente , Comportamento Alimentar/psicologia , Adulto Jovem , Projetos de Pesquisa , Promoção da Saúde/métodos , Dieta Saudável , DietaRESUMO
Ghrelin, a hormone secreted by the stomach, binds to the growth hormone secretagogue receptor (GHSR) in various brain regions to produce a number of behavioral effects that include increased feeding motivation. During social defeat stress, ghrelin levels rise in correlation with increased feeding and potentially play a role in attenuating the anxiogenic effects of social defeat. One region implicated in the feeding effects of ghrelin is the ventral tegmental area (VTA), a region implicated in reward seeking behaviors, and linked to social defeat in mice. Here we examined the role of GHSR signaling in the VTA in feeding behavior in mice exposed to social defeat stress. Male C57BL/J6 mice that were socially defeated once daily for 3 weeks ate more, had higher plasma ghrelin level and increased GHSR expression in the VTA compared to non-stressed mice. Socially defeated GHSR KO mice failed to increase their caloric intake in response to this stressor but rescue of GHSR expression in the VTA restored feeding responses. Finally, we pharmacologically blocked VTA GHSR signalling with JMV2959 infused via an indwelling VTA cannula connected to a minipump. Vehicle-treated mice increased their caloric intake during social defeat, but JMV2959-infusions attenuated feeding responses and increased anxiety-like behaviors. The data suggest that GHSR signalling in the VTA is critical for the increases in appetite observed during chronic social defeat stress. Furthermore, these data support the idea that GHSR signaling in the VTA may also have anxiolytic effects, and blocking GHSR in this region may result in an anxiety-like phenotype.
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Comportamento Alimentar , Grelina , Receptores de Grelina , Derrota Social , Estresse Psicológico , Área Tegmentar Ventral , Animais , Masculino , Camundongos , Ansiedade/metabolismo , Comportamento Alimentar/fisiologia , Grelina/metabolismo , Camundongos Endogâmicos C57BL , Camundongos Knockout , Receptores de Grelina/metabolismo , Receptores de Grelina/genética , Transdução de Sinais/fisiologia , Estresse Psicológico/metabolismo , Área Tegmentar Ventral/metabolismoRESUMO
PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.
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Sobreviventes de Câncer , Neoplasias , Cuidados Paliativos , Sobrevivência , Humanos , Técnica Delphi , Metástase Neoplásica , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/normas , Assistência Centrada no Paciente/organização & administração , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde/normasRESUMO
PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared with those with early-stage disease or those nearing the end of life. These Multinational Association for Supportive Care in Cancer (MASCC)-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: A MASCC-ASCO expert panel was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including eight people with lived experience) across 33 countries (33% were low- to middle-resource countries) participated in the Delphi study and achieved ≥94.8% agreement for seven standards, (1) Person-Centered Care; (2) Coordinated and Integrated Care; (3) Evidence-Based and Comprehensive Care; (4) Evaluated and Communicated Care; (5) Accessible and Equitable Care; (6) Sustainable and Resourced Care; and (7) Research and Data-Driven Care, and ≥84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards support optimization of health outcomes and care experiences by providing guidance to stakeholders (health care professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers). Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.Additional information is available at www.mascc.org, www.asco.org/standards and www.asco.org/survivorship-guidelines.
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PURPOSE: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet. METHOD: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically. RESULTS: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition. CONCLUSIONS: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC.
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Neoplasias da Mama , Enfermeiras e Enfermeiros , Humanos , Feminino , Atenção à Saúde , Neoplasias da Mama/terapia , Pacientes , Empatia , Pesquisa QualitativaRESUMO
BACKGROUND: This study examines gender differences in parental attitudes toward risky play for 5- to 11-year-old boys and girls in Britain. METHODS: Analyses use data from the cross-sectional, nationally representative British Child Play Survey. Survey respondents were caregivers of primary-school-aged children living in Britain. Parent self-reported their risk tolerance in play via the Tolerance for Risk in Play Scale (TRiPS) and the Risk Engagement and Protection Survey (REPS). The REPS includes subscales that assess caregiver attitudes around "Protection from Injury" (PFI) and "Engagement with Risk" (EWR) in relation to children's play. Multiple linear regression compared caregiver gender differences in TRiPS, REPS-PFI, and REPS-EWR at the item level, and overall. Associations between child gender and these scales were also examined. RESULTS: Among 1919 caregivers, no significant gender differences emerged in mean TRiPS (P = .72), REPS-EWR (P = .58), and REPS-PFI (P = .34) scores. Activity-specific differences were evident in caregivers' tolerance for individual risky play activities (15/31 activities). Parents of boys exhibited higher risk tolerance (B = -4.48, P < .01) and willingness for their child to engage in risky play (B = -0.63, P < .01) than parents of girls. CONCLUSIONS: While there was no difference between male and female caregivers overall attitudes, gender differences were prominent for specific play activities and attitudes, with male caregivers demonstrating higher tolerance for the riskiest activities. Parents of boys expressed more permissive attitudes toward engagement in risky play. Further work is needed to identify why there is gender-related variation in these attitudes and should be considered in interventions that support parents in enabling adventurous play opportunities for children.