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BACKGROUND: Lived experience researchers draw on their lived and living experiences to either lead on or inform research. Their personal experiences are relevant to the research topic and so they must manage the interplay of their health and healthcare experiences with the research, population, and data they work with, as well as the more general challenges of being a researcher. Lived experience researchers must navigate these dilemmas in addition to queries over their competency, due to issues relating to intersectionality and epistemic injustice. This justifies a motivation to better understand the experiences of lived experience researchers and develop appropriate and personalised supervision based on their preferences and needs. METHODS: Q methodology was used to identify a collection of identity-related issues that impact lived experience researchers during PhD research in the context of the UK. These issues were presented in the form of 54 statements to 18 lived experience researchers to prioritise as topics to explore in supervision. RESULT: It was found that lived experiences researchers could be grouped into three distinct factors following an inverted factor analysis: Factor 1: Strengthening my identity, skills, growth, and empowerment; Factor 2: Exploring the emotional and relational link I have with the research and Factor 3: Navigating my lived and professional experiences practically and emotionally. The findings suggest that there may be three types of lived experience researchers, each with different needs from supervision, suggesting the population is heterogeneous. CONCLUSION: The research identified a deeper understanding of the needs of lived experience researchers and highlights the importance of personalised supervision according to the individual needs of the researcher and their preferences for supervision. The findings reinforce the importance of integrating a clinical dimension into supervision to support the needs of all lived experience researchers.
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PURPOSE: The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS: The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS: Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION: The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.
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Sobreviventes de Câncer , Países em Desenvolvimento , Humanos , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Estudos Transversais , Inquéritos e Questionários , Neoplasias/psicologia , Neoplasias/terapia , Países Desenvolvidos , Masculino , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Feminino , Psico-Oncologia , SobrevivênciaRESUMO
Cholera toxoid is an established tool for use in cellular tracing in neuroscience and cell biology. We use a sortase labeling approach to generate site-specific N-terminally modified variants of both the A2-B5 heterohexamer and B5 pentamer forms of the toxoid. Both forms of the toxoid are endocytosed by GM1-positive mammalian cells, and while the heterohexameric toxoid was principally localized in the ER, the B5 pentamer showed an unexpectedly specific localization in the medial/trans-Golgi. This study suggests a future role for specifically labeled cholera toxoids in live-cell imaging beyond their current applications in neuronal tracing and labeling of lipid rafts in fixed cells.
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Toxina da Cólera , Cisteína Endopeptidases , Complexo de Golgi , Humanos , Toxina da Cólera/metabolismo , Cisteína Endopeptidases/metabolismo , Complexo de Golgi/metabolismo , Animais , Proteínas de Bactérias/metabolismo , Proteínas de Bactérias/genética , Aminoaciltransferases/metabolismo , Aminoaciltransferases/genética , EndocitoseRESUMO
Clinical communication between major trauma patients (MTP) and healthcare professionals is extremely complex. Multiple demands are placed on specialist multi-disciplinary teams (MDT) and patients in all stages of treatment. Patient-staff clinical communication has an integral role in MTP healthcare experiences, supporting them with a range of physical and psychological difficulties post-injury. This study aimed to understand MTP perspectives of clinical communication within a MTC through qualitative semi-structured interviews. Twenty participants were purposively sampled from an outpatient follow-up clinic and interviews were analysed using a pluralistic qualitative approach. Three themes were conceptualised from the data; "Challenges to speaking up" "Conversations left me feeling" and "Strategies need to be clinical but tailored". Patients often found it challenging to speak up due to feelings of vulnerability, confusion, and challenges navigating medical terminology. Patients spoke of not wanting to burden staff and family members playing a role in patient-staff communication, but these challenges require further exploration. Patients highlighted the positive (feel reassured, cared for, and human again) and negative (feeling like an object, angry, confused, and dependent) emotional impact of staff communication. Patients also described the benefits of being provided with written information, clear explanations of injuries and person-centred communication. MTP require multiple options to communicate and address psychological difficulties. Greater training on the emotional impact of conversations, skills to respond to psychological distress and communication guidance for staff, is needed to improve clinical communication with MTP.
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Comunicação , Pesquisa Qualitativa , Centros de Traumatologia , Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Relações Profissional-Paciente , Entrevistas como Assunto , Ferimentos e Lesões/psicologia , Ferimentos e Lesões/terapia , Idoso , Atitude do Pessoal de Saúde , Assistência Centrada no Paciente , Adulto JovemRESUMO
Emotional distress is common in young people with epilepsy (YPwE). According to the Self-Regulatory Executive Function (S-REF) model, maladaptive metacognitive beliefs and perseverative thinking are fundamental in the development and maintenance of emotional distress. As emotional distress and perseverative thinking can highly fluctuate over short intervals in YPwE, it is important to account for this variability when testing the utility of psychological models. Experience sampling methodology (ESM) was therefore used to explore the momentary relationship between metacognitive beliefs, perseverative thinking, and emotional distress in YPwE. Eighteen participants diagnosed with epilepsy (aged 12-17 years) completed the 10-day ESM period. Participants were prompted to complete the ESM assessment five times daily. The ESM assessment assessed participant's momentary levels of metacognitive beliefs, perseverative thinking (i.e., worry and rumination), and emotional distress (i.e., anxiety and depression). A series of multilevel regression analyses indicated that metacognitive beliefs were significantly positively associated with worry, rumination, anxiety and depression. After controlling for worry and rumination, respectively, metacognitive beliefs did not account for additional variance in anxiety or depression. Findings provide preliminary support for the utility of the S-REF model for emotional distress in YPwE. Metacognitive therapy, which is underpinned by the S-REF model, may be an appropriate intervention for emotional distress in YPwE. Future studies should assess the mediational relationship between metacognitive beliefs, perseverative thinking, and emotional distress using time-lagged models.
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Epilepsia , Metacognição , Humanos , Adolescente , Depressão/etiologia , Depressão/psicologia , Avaliação Momentânea Ecológica , Ansiedade/etiologia , Ansiedade/psicologia , Transtornos de Ansiedade , Epilepsia/complicações , Epilepsia/psicologiaRESUMO
Anxiety and depression are common in adolescents with epilepsy. Identifying psychosocial risk factors for anxiety and depression is essential for adolescents with epilepsy to receive appropriate support. This systematic review synthesised findings of studies examining the relationship between psychosocial factors and anxiety and/or depression in adolescents with epilepsy. Outcomes were anxiety, depression, and mixed anxiety & depression. Six electronic databases were searched for studies which: used cross-sectional or prospective designs; quantitatively evaluated the relationship between psychosocial factors and anxiety and/or depression; presented results for adolescents with epilepsy aged 9-18 years; and used validated measures of anxiety and/or depression. Psychosocial factors were categorised as intrapersonal, interpersonal, or parent-specific factors. Sixteen studies (23 articles) were included. All but one were cross-sectional. Regarding intrapersonal factors, alternative mental health difficulties were consistently positively associated with all three outcomes. Negative attitude towards epilepsy, lower seizure self-efficacy, lower self-esteem and stigma were consistently positively associated with depression. Interpersonal factors (i.e., lower family functioning assessed from an adolescent's perspective) and parent-specific factors (i.e., parental stigma, stress, anxiety and psychopathology) were positively associated with at least one outcome. Adolescent epilepsy management should exceed assessment of biological/biomedical factors and incorporate assessment of psychosocial risk factors. Prospective studies examining the interplay between biological/biomedical factors and the psychosocial factors underpinning anxiety and depression in adolescents with epilepsy are needed.
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Depressão , Epilepsia , Humanos , Adolescente , Depressão/etiologia , Depressão/psicologia , Estudos Prospectivos , Ansiedade/etiologia , Ansiedade/psicologia , Transtornos de Ansiedade , Epilepsia/complicações , Epilepsia/psicologiaRESUMO
INTRODUCTION: Psychological distress is common in intensive care unit (ICU) survivors and is anticipated in those who were treated for severe COVID-19 infection. This trainee-led, multicentre, observational, longitudinal study aims to assess the psychological outcomes of ICU survivors treated for COVID-19 infection in the UK at 3, 6 and/or 12 months after ICU discharge and explore whether there are demographic, psychosocial and clinical risk factors for psychological distress. METHODS AND ANALYSIS: Questionnaires will be provided to study participants 3, 6 and/or 12 months after discharge from intensive care, assessing for anxiety, depression, post-traumatic stress symptoms, health-related quality of life and physical symptoms. Demographic, psychosocial and clinical data will also be collected to explore risk factors for psychological distress using latent growth curve modelling. Study participants will be eligible to complete questionnaires at any of the three time points online, by telephone or by post. ETHICS AND DISSEMINATION: The PIM-COVID study was approved by the Health Research Authority (East Midlands - Derby Research and Ethics Committee, reference: 20/EM/0247). TRIAL REGISTRATION NUMBER: NCT05092529.
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A promising way to mitigate inequality is by addressing students' worries about belonging. But where and with whom is this social-belonging intervention effective? Here we report a team-science randomized controlled experiment with 26,911 students at 22 diverse institutions. Results showed that the social-belonging intervention, administered online before college (in under 30 minutes), increased the rate at which students completed the first year as full-time students, especially among students in groups that had historically progressed at lower rates. The college context also mattered: The intervention was effective only when students' groups were afforded opportunities to belong. This study develops methods for understanding how student identities and contexts interact with interventions. It also shows that a low-cost, scalable intervention generalizes its effects to 749 4-year institutions in the United States.
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Logro , Identificação Social , Estudantes , Humanos , Estudantes/psicologia , Universidades , Distribuição Aleatória , Intervenção PsicossocialRESUMO
US universities must proactively address potential concerns.
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BACKGROUND: Identity is how we understand ourselves and others through the roles or social groups we occupy. This review focuses on lived experience researchers and providers and the impact of these roles on identity. Lived experience researchers and providers use their lived experience of mental or physical disability either as experts by experience, researchers, peer workers, or mental health professionals with lived experience. They must navigate both professional and personal aspects to their roles which can be complex. Performing roles simultaneously embodying professional and lived experiences contribute towards a lack of clarity to identity. This is not adequately explained by the theoretical evidence base for identity. MAIN BODY: This systematic review and narrative synthesis aimed to provide a conceptual framework to understand how identity of lived experience researchers and providers is conceptualised. A search strategy was entered into EBSCO to access Academic search complete, CINAHL, MEDLINE, PsycINFO, Psych Articles, and Connected papers. Out of the 2049 yielded papers, thirteen qualitative papers were eligible and synthesised, resulting in a conceptual framework. Five themes explained identity positions: Professional, Service user, Integrated, Unintegrated and Liminal. The EMERGES framework, an original conception of this review, found themes of: Enablers and Empowerment, Motivation, Empathy of the self and others, Recovery model and medical model, Growth and transformation, Exclusion and Survivor roots contributed to lived experience researcher and provider identities. CONCLUSIONS: The EMERGES framework offers a novel way to understand the identities of lived experience researchers and providers, helping support effective team working in mental health, education, and research settings.
Patients now commonly help to teach healthcare professionals from their own perspective of what it is like to experience health difficulties and healthcare services. Consequently, the needs of patients are being better recognised by healthcare providers. Patients are also involved in research. These types of patient involvement lead to improved research and care. Patients included in this type of work are frequently referred to as patient providers, service user researchers, peer workers, experts by experience or lived experience researchers and providers. This might mean they are no longer viewed as people who use services but as people who provide a service. This review helps us understand how those in these roles are affected and how they understand themselves. We found they were sometimes described as either patients or professionals. Sometimes they were described as both patient and professional at the same time. Other times they were described as somewhere between a patient or professional. There were other important ideas that affected how they viewed themselves because of these experiences. These included feelings of empowerment and motivation from doing this important teaching and clinical work. The roles gave them a better understanding of their own experiences. These roles led to a personal growth and sense of achievement. The experiences of exclusion, and of being a patient affected how patient providers think of themselves. This understanding can lead to patient providers being better understood and leads to better teaching and training of healthcare professionals.
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OBJECTIVE: Adults with Diabetes Mellitus (DM) experience high levels of depression and anxiety that are not always effectively ameliorated by current therapeutic approaches. The Self-Regulatory Executive Function (S-REF) model, which underpins metacognitive therapy (MCT), posits that depression and anxiety become persistent when stored metacognitive beliefs guide an individual to respond to common thoughts and feelings in a certain way. We hypothesized that (i) metacognitive beliefs would predict depression and anxiety independently of participants' representations of their illness; and (ii) rumination would mediate independent prediction of depression and anxiety by metacognitive beliefs. DESIGN: A prospective mediation study. METHODS: Four hundred and forty-one adults with DM (Types 1 and 2) completed a two time-point survey. Metacognitive beliefs, illness representations and rumination were measured at baseline, and depression and anxiety measured at baseline and 6-months later. Data were analysed using structural equation modelling. Baseline illness representations, depression and anxiety were used as control variables. RESULTS: A structural equation analysis showed potential mediation, by baseline rumination, of any effects of baseline metacognitive variables on 6-month distress in Type 1 and 2 diabetes samples. Significant standardized coefficients for relationships between the metacognitive latent variable and rumination were .67 (Type 1) and .75 (Type 2) and between rumination and distress of .36 and .43, respectively. These effects were independent of direct and independent effects of illness representation variables. CONCLUSIONS: Findings are consistent with metacognitive beliefs playing a key role in depression and anxiety by increasing the likelihood of rumination in adults with DM. MCT may be an effective intervention for this population, subsequent to further longitudinal testing of the S-REF model.
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Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Angústia Psicológica , Humanos , Adulto , Estudos Prospectivos , Diabetes Mellitus Tipo 2/complicações , Ansiedade/psicologia , Depressão/psicologiaRESUMO
BACKGROUND: Anxiety and depression in cardiac rehabilitation (CR) are associated with greater morbidity, mortality, and increased healthcare costs. Current psychological interventions within CR have small effects based on low-quality studies of clinic-based interventions with limited access to home-based psychological support. We tested the effectiveness of adding self-help metacognitive therapy (Home-MCT) to CR in reducing anxiety and depression in a randomised controlled trial (RCT). METHODS AND FINDINGS: We ran a single-blind, multi-centre, two-arm RCT. A total of 240 CR patients were recruited from 5 NHS-Trusts across North West England between April 20, 2017 and April 6, 2020. Patients were randomly allocated to Home-MCT+CR (n = 118, 49.2%) or usual CR alone (n = 122, 50.8%). Randomisation was 1:1 via randomised blocks within hospital site, balancing arms on sex and baseline Hospital Anxiety and Depression Scale (HADS) scores. The primary outcome was the HADS total score at posttreatment (4-month follow-up). Follow-up data collection occurred between August 7, 2017 and July 20, 2020. Analysis was by intention to treat. The 4-month outcome favoured the MCT intervention group demonstrating significantly lower end of treatment scores (HADS total: adjusted mean difference = -2.64 [-4.49 to -0.78], p = 0.005, standardised mean difference (SMD) = 0.38). Sensitivity analysis using multiple imputation (MI) of missing values supported these findings. Most secondary outcomes also favoured Home-MCT+CR, especially in reduction of post-traumatic stress symptoms (SMD = 0.51). There were 23 participants (19%) lost to follow-up in Home-MCT+CR and 4 participants (3%) lost to follow-up in CR alone. No serious adverse events were reported. The main limitation is the absence of longer term (e.g., 12-month) follow-up data. CONCLUSION: Self-help home-based MCT was effective in reducing total anxiety/depression in patients undergoing CR. Improvement occurred across most psychological measures. Home-MCT was a promising addition to cardiac rehabilitation and may offer improved access to effective psychological treatment in cardiovascular disease (CVD) patients. TRIAL REGISTRATION: NCT03999359.
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Doenças Cardiovasculares , Humanos , Doenças Cardiovasculares/terapia , Depressão/psicologia , Ansiedade/diagnóstico , Transtornos de Ansiedade , Inglaterra , Análise Custo-Benefício , Qualidade de VidaRESUMO
Uveal melanoma (UM) survivors can experience significant emotional distress, although the factors underpinning this are poorly understood. Systematic reviews of distress in UM only include cross-sectional studies, thereby limiting our understanding of causal factors. This review identified prospective clinical, demographic, social and psychological predictors of distress in UM survivors. A systematic search of the literature for English language prospective studies was conducted. Thirteen papers, reporting data from seven unique datasets were included in a narrative synthesis of the results. Younger age (3 studies from 3 datasets), physical health (including visual impairment, ocular symptoms, and other UM-related factors; 3 studies from 3 datasets), and psychological factors (mainly baseline distress; 3 studies from 3 datasets and worry about recurrence; 2 studies from 2 datasets), significantly predicted distress. There was no consistent evidence for other demographic, clinical or social variables (significant in <50% of datasets). Generally, the quality of the papers was adequate. However, attrition rates were high or not reported in over half of the included studies. The findings of this review emphasise the importance of attempts to prevent and recognise distress immediately post-diagnosis of UM. Particular focus should be given to younger patients, those with physical and psychological health difficulties at the time of diagnosis, and those who develop adverse treatment symptoms during survivorship. More research into potential social and psychological variables and their role in predicting distress in survivors is recommended.
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Sobreviventes de Câncer , Angústia Psicológica , Humanos , Estudos Prospectivos , Sobreviventes de Câncer/psicologia , Estresse Psicológico/etiologia , Estudos Transversais , Qualidade de Vida/psicologiaRESUMO
OBJECTIVE: The fear of cancer recurrence (FCR) in later survivorship can lead to poorer mental health, quality of life and physical and functional recovery. Later-occurring FCR may be a consequence of late-emerging physical symptoms and functional problems from cancer or its treatment. Based on the self-regulation model, we predicted that persistent or escalating symptoms and functional problems would prospectively predict FCR observed 2-5 years after diagnosis and treatment. METHODS: This is a five-year study of 708 uveal melanoma (UM) patients, measuring self-reported visual and ocular symptoms, functional problems and FCR at 6, 12, 24, 36, 48 and 60 months post-diagnosis. A mixed measures design over four levels with observations staggered to represent prospective prediction. Criterion variables were FCR at 24, 36, 48 and 60 months. Predictors were symptom and function scores measured at the previous two observations to FCR. Controls were FCR measured at the previous observation to the criterion FCR measure and demographic, clinical and treatment variables. RESULTS: Linear mixed modelling showed that FCR was uniquely predicted by enduring symptoms, those that emerged two observations previously, but not symptoms arising at the previous observation. FCR was predicted by functional problems, which emerged in the observation prior to FCR, but not the observation previous to that. CONCLUSIONS: Persistent or emerging post-treatment symptoms and functional limitations are probable risk factors for late-occurring FCR in UM survivors. IMPLICATIONS FOR CANCER SURVIVORS: Monitoring symptoms and functional limitations assists in identifying at-risk survivors and targeting preventive interventions. Self-regulation theory suggests that helping survivors to more realistically appraise symptoms and functional problems may prevent FCR.
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Sobreviventes de Câncer , Humanos , Sobreviventes de Câncer/psicologia , Qualidade de Vida , Estudos Prospectivos , Recidiva Local de Neoplasia/psicologia , Medo/psicologia , Sobreviventes/psicologiaRESUMO
Introduction: Head and neck cancer (HNC) diagnosis and treatment can be a significant life trauma. Some HNC survivors experience post-traumatic growth (PTG), which has been linked with better health-related quality-of-life. Empirical research on PTG, and theoretical models, point to the importance of being able to purposely make sense of the traumatic experience. Intrusive rumination, by contrast, is linked to poorer outcomes. This study explored HNC survivors' experiences of rumination. Methods: Twenty HNC survivors between 9 months and 5 years post-diagnosis were recruited (11 male, 9 female, age range 46-83). They had a range of HNC sub-types and cancer treatments. Participants underwent a semi-structured interview about their cancer diagnosis and treatment. Reflexive thematic analysis identified themes and sub-themes around rumination. Results: Four themes with linked subthemes on the content and process of rumination were identified. Theme 1 was rumination and worry related to diagnosis. Here, survivors discussed how the HNC diagnosis and plans for treatment had dominated their initial thoughts. Theme 2 was processing the trauma of HNC. This theme reflected rumination on the traumatic experience of diagnosis and treatment and how the participant was reacting to it. Theme 3 was considering the impact. This theme encompassed retrospective thinking (e.g., on treatment decisions made) and comparisons between the participant now versus the early days after diagnosis. Theme 4 was continued rumination. This theme included ongoing intrusive and distressing rumination about the trauma and impact of cancer. Those who expressed ongoing rumination revisited fears (e.g., concerns about their future) or returned to negative experiences (e.g., distressing exchanges with healthcare professionals or what they perceived as poor care). Conclusion: This study uniquely describes the nature and content of rumination following HNC. Early intrusive rumination is common and may reflect perceptions of cancer as an existential threat. Over time, rumination can become more reflective and move towards deliberate meaning-making. Some HNC survivors may benefit from interventions to reduce barriers to this transition. The content of distressing and difficult to control rumination (commonly focused on ongoing fears or inability to resolve difficult experiences) helps to identify those who may benefit from more directed psychological support.
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The focus of this Perspective article is on the comparison of two of the most popular initial applicant screening methods: Resumes and application forms. The viewpoint offered is that application forms are superior to resumes during the initial applicant screening stage of selection. This viewpoint is supported in part based on criterion-related validity evidence that favors application forms over resumes. For example, the biographical data (biodata) inventory, which can contain similar questions to those used in application forms, is one of the most valid predictors of job performance (if empirically keyed), whereas job experience and years of education, which are often inferred from resumes and cover letters, are two of the least valid predictors of job performance (among commonly used screening criteria). In addition to validity evidence, making decisions based on application forms as opposed to resumes is likely to help organizations defend against claims of discriminatory hiring while enhancing their ability to hire in a more diverse, equitable, and inclusive manner. For example, applicant names on resumes can lead to screening bias against members of identifiable subgroups, whereas an applicant's name can be easily and automatically hidden from decision-makers when reviewing application forms (particularly digital application forms). Despite these convincing arguments focused on applicant quality and diversity, a substantial research-practice gap regarding the use of resumes and cover letters remains.
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Background: Anxiety and depression contribute to poorer physical and mental health outcomes in cardiac patients. Psychological treatments are not routinely offered in cardiac care and have mixed and small effects. We conducted a series of studies under the PATHWAY research programme aimed at understanding and improving mental health outcomes for patients undergoing cardiac rehabilitation (CR) through provision of metacognitive therapy (MCT). Methods: PATHWAY was a series of feasibility trials, single-blind, multicenter, randomized controlled trials (RCTs), qualitative, stated preferences for therapy and health economics studies. Findings: Patients felt their psychological needs were not met in CR and their narratives of distress could be parsimoniously explained by the metacognitive model. Patients reported they would prefer therapy over no therapy as part of CR, which included delivery by a cardiac professional. Two feasibility studies demonstrated that RCTs of group-based and self-help MCT were acceptable, could be embedded in CR services, and that RCTs of these interventions were feasible. A definitive RCT of group-MCT within CR (n = 332) demonstrated significantly greater reductions in the severity of anxiety and depression, exceeding CR alone, with gains maintained at 12 month follow-up (SMD HADS total score = 0.52 at 4 months and 0.33 at 12 months). A definitive trial of self-help MCT is ongoing. Conclusion: There is a need to better meet the psychological needs of CR patients. Embedding MCT into CR demonstrated high acceptability and improved efficacy on psychological outcomes. Results support roll-out of MCT in CR with evaluation of national implementation. Registration: URL: NCT02420431; ISRCTN74643496; NCT03129282.
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BACKGROUND: Understanding patient and health practitioner perspectives on clinical trials can inform opportunities to enhance trial conduct and design, and therefore patient experience. Patients with haematological cancers have faced additional risk and uncertainty during the pandemic but it is unclear how they and practitioners have experienced cancer trials during this period. In the context of a haemato-oncology trial (PETReA), we compared patient and practitioner views and experiences of PETReA before and during COVID-19. METHODS: Qualitative study embedded within PETReA. Semi-structured interviews (N=41) with patients and practitioners from 16 NHS sites before (n=17) and during the first wave of COVID-19 (n=24). Analysis drew on the framework approach. RESULTS: Practitioners acknowledged the need for the trial to continue during the pandemic but their treatment preferences altered, becoming more pronounced for patients who had a favourable response to induction treatment, while staying unchanged for patients with a less favourable response. Practitioners commented that COVID-19 meant the evidence base for the trial arms was lacking or mixed, but that it likely increased the risks of maintenance treatment for patients with a favourable response to induction treatment. While only one participant interviewed withdrew from PETReA during the pandemic, others said they would consider withdrawing if information that they were at increased risk of severe illness from COVID-19 became available. During COVID-19, patients described less frequent contact with the trial team, which left some feeling less clear about their trial pathway. However, several described having in-depth, collaborative discussions with practitioners about the risks and benefits of randomisation in the context of COVID-19. Patients valued these discussions and were reassured by the emphasis practitioners placed on patients being free to withdraw if circumstances changed, and this helped patients feel comfortable about continuing in PETReA. CONCLUSIONS: The findings point to ways trial communication can support patients to feel comfortable about continuing in a trial during uncertain times, including adopting a more in-depth, collaborative exploration of the risks and benefits of trial arms with patients and emphasising voluntariness. The results are relevant to trialists recruiting patients who are clinically extremely vulnerable or are at increased risk of poor COVID-19 outcomes despite being vaccinated.
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COVID-19 , Neoplasias , Ensaios Clínicos como Assunto , Comunicação , Humanos , Neoplasias/terapia , Pandemias/prevenção & controle , Pesquisa QualitativaRESUMO
BACKGROUND: People with either Type 1/Type 2 diabetes experiencing anxiety or depression experience worse clinical and social outcomes. Efficacy of available psychological and pharmacological treatments for anxiety and depression is unclear. Aggregate data meta-analyses (AD-MAs) have failed to consider the clinical relevance of any change these treatments elicit. Thus, we sought to complete an individual participant data meta-analysis (IPD-MA) to evaluate this. METHODS: Eligible RCTs of psychological treatments (PTs) and pharmacological treatments (PhTs) were systematically identified and assessed using the Cochrane Risk of Bias Tool-2. IPD was requested and Jacobson's methodology was used to determine the clinical relevance of symptom-change. Traditional effect sizes were calculated to permit comparison of trials providing and not providing IPD and to compare with AD-MAs. RESULTS: Sufficient data was obtained to conduct an IPD-MA for PTs (12/25) but not PhTs (1/5). Across PT trials, rates of 'recovery' for depression post-intervention were low. Whilst significantly more treated patients did recover (17% [95% CI 0.10, 0.25]) than controls (9% [95% CI 0.03, 0.17]), the difference was small (6% [95% CI 0.02, 0.10]). LIMITATIONS: Only 50% of eligible trials provided IPD; we were also only able to examine outcomes immediately following the end of an intervention. CONCLUSION: Current psychological interventions offer limited benefit in treating anxiety and depression in people with Type 1 or Type 2 diabetes (83% remain depressed). More efficacious interventions are urgently needed.
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Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Ansiedade/terapia , Depressão/terapia , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/terapia , Humanos , Intervenção PsicossocialRESUMO
OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).