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1.
Appetite ; 203: 107699, 2024 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-39366522

RESUMO

Food banks have become commonplace in the UK as an emergency response to food insecurity. However, food banks are not a long-term solution to food insecurity and are often not accessed by those in need. In the context of the cost-of-living crisis, and increased food insecurity, this systematic review applied market/government failure theory, voluntary failure theory, and Radimer et al.'s (1990) domains of food insecurity to explore three important aspects relevant to the food banking experience: the drivers of food bank use; the limitations of the current food bank model; and the impacts of the food banking model for food bank clients. Empirical, peer-reviewed articles written in English with a UK food bank context and reporting relevant data to these aspects were eligible for inclusion. In total, 221 titles were identified using four databases (Web of Science, SCOPUS, PubMed, CINHAL Plus) in July 2022. The final sample of 41 articles (comprising qualitative, quantitative and mixed methods studies), were quality assessed using the Mixed Methods Appraisal Tool. Data were extracted and analysed through directed content analysis. Market and government failures were widely reported to drive food bank use. Insufficiency, paternalism and particularism represented key limitations of the food bank model. Negative health and psychological impacts of food bank use were prominent, yet social impacts were largely positive. Consequently, new solutions are needed to promote positive health and psychological impacts for food bank clients in the UK. The application of these findings to other high-income countries experiencing food insecurity should be determined.

2.
J Genet Couns ; 2024 Oct 06.
Artigo em Inglês | MEDLINE | ID: mdl-39370552

RESUMO

The demand for direct-to-patient (DTP) telegenetics (genetics services delivered via videoconferencing) in genetic counseling practice has rapidly increased, particularly since the COVID-19 pandemic. Recent telegenetics literature is mostly quantitative and not in the Australian context. A qualitative interview study was conducted to address this gap. This research investigated the experiences of patients and genetic counselors (GCs), enrolled in a randomized controlled trial, using telegenetics and telephone for cancer genetic counseling appointments. Twenty-eight semi-structured interviews with patients (n = 22) and GCs (n = 6) were conducted following patient randomization to either a telephone or telegenetics genetic counseling appointment. The interviews explored participant's experiences of telegenetics and compared DTP telegenetics with telephone and in-person delivery. Codebook thematic analysis was used to develop topic summaries from the data. Patient and GC participants noted positive experiences of telegenetics; with key benefits reported as reduced travel time, time and cost saving, ease, convenience, efficiency, and comfortability. Technical issues and privacy concerns were highlighted as potential disadvantages of telegenetics. All but one patient felt sufficiently emotionally supported while using telegenetics. Telegenetics has both benefits and limitations; however, generally, this cohort found telegenetics to be a suitable and acceptable mode of delivery for genetic counseling with many advantages over in-person or telephone appointments. Further studies should be conducted to provide evidence for the long-term implementation of telegenetics, regardless of any future COVID-19 pandemic lockdown restrictions.

3.
PLoS One ; 19(10): e0308804, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39388506

RESUMO

Weight and skin-fold measurements were made at five-day intervals during a 47-day expedition by six men and three women from the edge of the sea ice to the South Pole. From these, together with detailed manual records of the nutrition for individual participants, the average daily energy expenditure was determined before and after a resupply at approximately mid-point of the expedition. For all participants body weight fell during the expedition with the overall loss being much smaller for the three female participants (-4.0, -4.0, -4.4kg) than for the male participants, (mean±sd) -8.6±2.0kg. Fat weight fell approximately linearly during the expedition with a total loss of (-4.1, -6.5 and -2.5kg) for the three female participants and -6.8±1.7kg for the male participants. Individual fat-free weight changed by a smaller amount overall: (0.13, 2.5 and -1.8kg) for the three female participants; -1.8±2.0kg for the male participants who, with one exception, lost fat-free tissue All participants showed a substantial variation in fat-free tissue weight during the expedition. Analysis of the daily energy expenditure showed adequate nutrition but the intake fell for the second part of the expedition although the reasons for this are unclear, but adaptation to the cold, altitude and workload are possible explanations. The validity of this time-averaged measurement for individual participants was determined from analysing moments about the mean of time-series actigraphy data from wrist worn devices. The mean and autocorrelation function of the actigraphy data across subjects were analysed to determine whether measures could be compared between participants. The first, second and third moment about the mean of the day-to-day activity was found to be time-invariant for individual subjects (χ2, p>0.05) and the normalized mean and autocorrelation measured over a day for each participant indistinguishable from the mean of the group (χ2, p>0.05) allowing both longitudinal and cross-sectional analysis.


Assuntos
Composição Corporal , Metabolismo Energético , Humanos , Feminino , Masculino , Adulto , Viagem , Peso Corporal , Expedições
4.
Head Neck Pathol ; 18(1): 112, 2024 Oct 22.
Artigo em Inglês | MEDLINE | ID: mdl-39436498

RESUMO

BACKGROUND: HPV- associated squamous cell carcinoma (SCC) is uncommon in non-oropharynx sites and not well characterized. This study aims to investigate uncommon phenotypes of HPV-associated head and neck carcinoma, the prevalence and morphologic spectrum of HPV-associated SCC in the oral cavity, larynx and hypopharynx. METHOD: P16 immunostaining and HPV E6/7 in situ hybridization (ISH) were performed on tissue microarrays comprised of SCCs from different anatomic sites: oropharynx (n = 270), hypopharynx (n = 52), oral cavity (n = 95) and larynx (n = 123). Tumors were classified as HPV-associated based on a positive E6/7 ISH testing. RNA sequencing was performed on several selected cases. RESULT: 66% oropharynx SCCs (OPSCCs) were HPV-associated; all were p16/HPV testing concordant except one which was p16 negative. The p16-/HPV + OPSCC resembled similar gene expression signature with p16+/HPV + OPSCCs by transcriptome analysis. 6/95 (6%) oral cavity SCCs were HPV-associated, all from male patients and 5/6 (83%) arose from the floor of mouth. Morphologically, 3/6 (50%) showed keratinizing SCC and 5/6 (83%) demonstrated HPV-associated squamous dysplasia in adjacent mucosa. 1/123 (less than 1%) larynx SCCs and 0/52 hypopharynx SCCs were HPV-associated. CONCLUSION: Although uncommon, p16 negative HPV-associated OPSCC can occur, emphasizing the importance of judicious HPV testing. The morphology of HPV-associated oral cavity SCCs may deviate from prototypic nonkeratinizing SCC, making them difficult to recognize. Presence of HPV-associated squamous dysplasia could serve as a morphologic clue.


Assuntos
Infecções por Papillomavirus , Fenótipo , Carcinoma de Células Escamosas de Cabeça e Pescoço , Humanos , Masculino , Infecções por Papillomavirus/complicações , Infecções por Papillomavirus/virologia , Carcinoma de Células Escamosas de Cabeça e Pescoço/virologia , Carcinoma de Células Escamosas de Cabeça e Pescoço/patologia , Pessoa de Meia-Idade , Feminino , Idoso , Adulto , Neoplasias de Cabeça e Pescoço/virologia , Neoplasias de Cabeça e Pescoço/patologia , Idoso de 80 Anos ou mais , Papillomavirus Humano
5.
J Cancer Surviv ; 2024 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-39375279

RESUMO

PURPOSE: Fear of cancer recurrence (FCR) is not routinely addressed in clinical practice, meaning many cancer survivors forego effective interventions. We established expert consensus on a clinical pathway to help health professionals identify and manage FCR in early-stage cancer survivors. METHODS: Australian health professionals and researchers working with adult cancer survivors participated in a three-round Delphi study promoted via oncology professional bodies and social media. The Round 1 online survey presented 38 items regarding FCR screening, triage, assessment, referral, and stepped care, based on a literature review, related pathways/guidelines, and expert input. Participants rated how representative of best-practice items were on a 5-point scale (strongly disagree-strongly agree), with optional qualitative feedback. Consensus was defined as ≥ 80% of participants strongly/agreeing with items. Items not reaching consensus were re-presented to Round 1 participants in two subsequent rounds with new items, derived from content analysis of qualitative feedback. RESULTS: From 94 participants in Round 1 (89% health professionals), 26/38 (68%) items reached consensus. By round 3, 35/38 (92%) items, including 8 new items, reached consensus. Routine FCR screening and triage conversations and stepped care management (i.e. tailored and staged treatment) were endorsed. However, the timing of FCR screening/triage did not reach consensus. CONCLUSIONS: This world-first FCR clinical pathway incorporating contemporary evidence and expert opinion recommends routine screening and triage to stepped care management of FCR. Some pathway components, such as screening or triage timing, may need tailoring for different contexts. IMPLICATIONS FOR CANCER SURVIVORS: Implementation of the pathway could aid routine identification and management of FCR, reducing its burden on cancer survivors and the healthcare system.

6.
Prev Med Rep ; 45: 102849, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39220611

RESUMO

Objective: The coronavirus pandemic impacted health-seeking behaviour and access to primary care in Australia. We investigated factors associated with intention-to-attend and attendance of cervical screening during the pandemic, mainly in Victoria, Australia. Methods: We used questionnaire and attendance data (Aug 2020-Nov 2022) from Compass-PLUS, a sub-study of the Compass randomized-controlled trial of Human Papillomavirus-based vs cytology-based screening. Data was restricted to the HPV-screening arm for comparability to the national program. We investigated associations overall and for younger (25-39 years) and older (≥40 years) cohorts, between intention-to-attend/attendance, and socio-demographics, anxiety-related scores, and agreement with beliefs about screening during the pandemic (e.g. importance of screening, increased workload, working from home, risk of infection). Results: Among 2,226 participants, positive intention to attend screening was more likely among those with a family history of cancer (p = 0.030) or living outside major cities (p = 0.024). Increased attendance was associated with increasing age (p < 0.001), prior regular cervical screening history [adjusted relative risk (aRR) for 2 screens in 6 years vs none: 1.23 (95 %CI 1.09,1.40); p < 0.001], and part-time employment or retirement compared to full-time employment [aRR:1.08 (1.02,1.14); aRR:1.12 (1.03, 1.22); respectively]. Lower attendance was related to increased agreement with statements indicating screening de-prioritisation (p-trend < 0.05) and higher recent anxiety, specifically in the older cohort (p-trend = 0.002). Conclusions: Reduced priority of screening and heightened recent anxiety may partly explain indications of lower-than-expected cervical screening rates during the pandemic. It is important that catch-up of missed HPV screens is performed to prevent a possible increase in cancer diagnoses in the long term.

7.
Pediatr Blood Cancer ; 71(11): e31147, 2024 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-39185694

RESUMO

INTRODUCTION: Accessing compassionate access schemes to obtain novel therapeutic agents for children with hard-to-treat cancers can be fraught with challenges such as regulatory barriers and limited resources. This study aimed to explore clinician perspectives on the barriers, impacts and ethical considerations of accessing novel therapeutic agents within the context of a paediatric oncology precision medicine trial. METHODS: We gathered data from 37 semi-structured interviews with paediatric oncologists participating in the PRecISion Medicine for Children with Cancer (PRISM) study, a precision medicine clinical trial in Australia. The interviews, conducted over 2 years, focused on paediatric oncologist's experiences with the PRISM trial. Interviews were re-analysed to identify themes related to access pathways and any challenges in obtaining novel agents through thematic analysis. The resulting thematic framework was discussed and refined by a multidisciplinary team. RESULTS: Three main themes were identified: (i) barriers to access, including poor drug availability, lack of evidence and the time burden of the application process; (ii) impacts of inaccessibility, encompassing medical consequences and financial burden on families; and (iii) ethical considerations, centred around balancing realistic expectations and providing compassionate care to patients and families. Paediatric oncologists expressed frustration with the complex regulatory landscape and the lack of systematic reporting on applications and outcomes of obtaining novel agents. Lengthy wait times for decision notifications were also highlighted, raising concerns about missed therapeutic opportunities for patients. CONCLUSION: This study provides insight to the challenges faced when seeking access to novel therapies for paediatric oncology patients. There is a clear need for improved communication, streamlining processes and increased resources to facilitate access to novel agents. Further resource development is necessary to address these complexities in accessing novel therapy agents to ultimately ensure equitable and timely access.


Assuntos
Acessibilidade aos Serviços de Saúde , Neoplasias , Medicina de Precisão , Humanos , Neoplasias/terapia , Criança , Feminino , Masculino , Oncologistas , Austrália
8.
Public Health Genomics ; 27(1): 110-123, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39089235

RESUMO

INTRODUCTION: Despite growing calls for the explicit application of theory when designing behaviour change interventions, limited empirical evidence exists regarding the effectiveness of these methods compared to non-theoretical approaches. A cluster randomized controlled trial (Hide and Seek Project - HaSP) tested two implementation approaches for improving hereditary cancer referral practices with one key distinction: implementation strategies were designed based explicitly on psychological theory or based on stakeholder intuition. This study presents the detailed methods and resources used to facilitate this comparison, whilst examining the strategies generated through both approaches. METHODS: Across seven Australian hospitals, clinical stakeholders attended focus groups to co-design site-specific strategies for improving Lynch syndrome referral. Co-design methods differed according to trial arm. Implementation strategy content was examined, with intuitively derived strategies retrospectively coded to determine theoretical alignment. RESULTS: Fifty-one strategies were proposed across all sites (theory-based arm = 32, intuition-based arm = 19). Overall, nine behaviour change technique (BCT) categories were used on 77 occasions. In the theory-based trial arm, eight BCT categories were identified on 53 occasions; and five BCT categories on 24 occasions in the intuition-based arm. BCT categories were largely similar across both arms. After retrospectively coding intuitively derived strategies, 42% contained mechanistic links, thereby demonstrating theoretical alignment. CONCLUSION: Methods facilitated robust comparison of theoretical and intuitive approaches to implementation strategy design. Recognizing the known benefits of theory for enhancing scientific learning, applying these methods on a larger scale may provide definitive evidence about the comparative effectiveness of theoretical approaches.


Assuntos
Neoplasias Colorretais Hereditárias sem Polipose , Neoplasias Colorretais Hereditárias sem Polipose/genética , Neoplasias Colorretais Hereditárias sem Polipose/diagnóstico , Humanos , Austrália , Intuição , Encaminhamento e Consulta , Grupos Focais , Feminino
9.
BJU Int ; 134(3): 484-500, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38839570

RESUMO

OBJECTIVES: To report the long-term outcomes from a longitudinal psychosocial study that forms part of the 'Identification of Men with a genetic predisposition to ProstAte Cancer: Targeted Screening in men at higher genetic risk and controls' (IMPACT) study. The IMPACT study is a multi-national study of targeted prostate cancer (PrCa) screening in individuals with a known germline pathogenic variant (GPV) in either the BReast CAncer gene 1 (BRCA1) or the BReast CAncer gene 2 (BRCA2). SUBJECTS AND METHODS: Participants enrolled in the IMPACT study were invited to complete a psychosocial questionnaire prior to each annual screening visit for a minimum of 5 years. The questionnaire included questions on sociodemographics and the following measures: Hospital Anxiety and Depression Scale, Impact of Event Scale, 36-item Short-Form Health Survey, Memorial Anxiety Scale for PrCa, Cancer Worry Scale, risk perception and knowledge. RESULTS: A total of 760 participants completed questionnaires: 207 participants with GPV in BRCA1, 265 with GPV in BRCA2 and 288 controls (non-carriers from families with a known GPV). We found no evidence of clinically concerning levels of general or cancer-specific distress or poor health-related quality of life in the cohort as a whole. Individuals in the control group had significantly less worry about PrCa compared with the carriers; however, all mean scores were low and within reported general population norms, where available. BRCA2 carriers with previously high prostate-specific antigen (PSA) levels experience a small but significant increase in PrCa anxiety (P = 0.01) and PSA-specific anxiety (P < 0.001). Cancer risk perceptions reflected information provided during genetic counselling and participants had good levels of knowledge, although this declined over time. CONCLUSION: This is the first study to report the longitudinal psychosocial impact of a targeted PrCa screening programme for BRCA1 and BRCA2 carriers. The results reassure that an annual PSA-based screening programme does not have an adverse impact on psychosocial health or health-related quality of life in these higher-risk individuals. These results are important as more PrCa screening is targeted to higher-risk groups.


Assuntos
Detecção Precoce de Câncer , Predisposição Genética para Doença , Neoplasias da Próstata , Humanos , Masculino , Neoplasias da Próstata/psicologia , Neoplasias da Próstata/genética , Neoplasias da Próstata/diagnóstico , Pessoa de Meia-Idade , Idoso , Predisposição Genética para Doença/psicologia , Detecção Precoce de Câncer/psicologia , Qualidade de Vida , Genes BRCA1 , Inquéritos e Questionários , Genes BRCA2 , Heterozigoto , Ansiedade/etiologia , Estudos Longitudinais
11.
Front Med (Lausanne) ; 11: 1332434, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38606155

RESUMO

Objectives: Paediatric oncologists often encounter challenges when seeking compassionate access to off-label therapies for their patients. This study employed implementation science and co-design techniques to develop the ProCure medicines database, with the goal of streamlining the application process and addressing identified barriers in paediatric oncology. Methods: This study utilised an exploratory qualitative research design. Seventeen healthcare providers, including oncologists, nurse consultants, and allied health professionals, participated in semi-structured interviews guided by the Consolidated Framework for Implementation Research (CFIR) and a visual process map aid. Deductive qualitative data analysis, according to the CFIR constructs, identified key barriers and facilitators. Collaborative design sessions engaged multidisciplinary teams to develop the ProCure beta version. Results: Barriers to off-label therapy access included resource-intensive applications, time sensitive decision-making, and complex pharmaceutical information. Facilitators included Drug Access Navigators, Molecular Tumour Boards, and a multi-disciplinary approach. ProCure addressed end-user needs by centralising medicines information. Additional features suggested by healthcare providers included blood-brain-barrier penetrability data and successful application examples. Conclusion: ProCure represents a promising solution to the challenges paediatric oncologists face in accessing off-label therapies. By centralising information, it simplifies the application process, aids decision-making, and promotes a collaborative approach to patient care. The potential of the database to stream and enhance off-label therapy access underscores its relevance in improving paediatric oncology practise. Further research and implementation efforts are warranted to assess ProCure's real-world impact and refine its features based on user feedback.

12.
JMIR Cancer ; 10: e47944, 2024 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-38526527

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.

13.
Curr Med Res Opin ; 40(4): 665-676, 2024 04.
Artigo em Inglês | MEDLINE | ID: mdl-38363353

RESUMO

OBJECTIVE: Limited real-world evidence exists to better understand the patient experience of living with symptoms and impacts of non-alcoholic steatohepatitis (NASH). This study aimed to (1) describe patient-reported perspectives of NASH symptoms and impacts on patients' daily lives and (2) develop a patient-centered conceptual NASH model. METHODS: A cross-sectional study using semi-structured qualitative interviews was conducted among adults (≥18 years) in the United States living with NASH. Eligible participants were diagnosed with NASH, had mild to advanced fibrosis (F1-F3), and no other causes of liver disease. The interview guide was informed by a targeted literature review (TLR) to identify clinical signs, symptoms, impacts, and unmet treatment needs of NASH. Participants described their experiences and perspectives around NASH and the symptoms, symptom severity/bother, and impact of NASH on their daily activities. Interviews were audio-recorded and transcribed verbatim for coding and thematic analysis. RESULTS: Twenty participants (age: 42.4 years; female: 50.0%) were interviewed. Participants discussed their experience with NASH symptoms (most frequent: fatigue [75.0%]; weakness/lethargy [70.0%]) and impacts (most frequent: physical and psychological/emotional [70.0% each]; dietary [68.4%]). Participants considered most symptoms to be moderately severe or severe and moderately or highly bothersome. Findings from the TLR and qualitative interviews were incorporated into a conceptual model that describes patient-reported symptoms and impacts of NASH, clinical signs, risk factors, and unmet treatment needs. CONCLUSION: Our study provides insights into patients' perspectives of NASH symptoms and their impact on their daily lives. These findings may guide patient-physician conversations, supporting patient-centered treatment decisions and disease management.


Study findings help to address the gap in current literature about patients' perspectives on NASH and its symptoms as well as its impact on daily life.The study proposes a holistic conceptual model that describes patients' perspectives of living with NASH, including symptoms and their impact, the clinical signs and risk factors of NASH, and the unmet treatment needs of the disease.Healthcare providers can use study findings to inform patient-focused decisions around treatment strategies for NASH.


Assuntos
Hepatopatia Gordurosa não Alcoólica , Adulto , Humanos , Feminino , Hepatopatia Gordurosa não Alcoólica/complicações , Hepatopatia Gordurosa não Alcoólica/epidemiologia , Estudos Transversais , Comorbidade , Fatores de Risco
14.
Inorg Chem ; 63(6): 2888-2898, 2024 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-38295440

RESUMO

Late-transition-metal catalysts for polymerization of olefins have drawn a significant amount of attention owing to their ability to tolerate and incorporate polar comonomers. However, a systematic way to experimentally quantify the electronic properties of the ligands used in these systems has not been developed. Quantified ligand parameters will allow for the rational design of tailored polymerization catalysts, which would target specific polymer properties. We report a series of platinum complexes bearing bisphosphinemonoxide ligands, which resemble those used in the polymerization catalysts of Nozaki and Chen. Their electronic properties are investigated experimentally, and trends are rationalized by using computed spectral properties. Benchmarking computational data with known experimental parameters further enhances the utility of both methods for determining optimal ligands for catalytic application.

15.
Palliat Support Care ; 22(3): 539-545, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38263685

RESUMO

OBJECTIVES: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training. METHODS: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis. RESULTS: We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists. SIGNIFICANCE OF RESULTS: Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.


Assuntos
Comunicação , Pessoal de Saúde , Neoplasias , Pesquisa Qualitativa , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Feminino , Masculino , Adulto , Austrália , Relações Profissional-Família , Pessoa de Meia-Idade , Adolescente , Criança
16.
J Cancer Surviv ; 2024 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-38191752

RESUMO

PURPOSE: To examine the effectiveness of professionally led support groups for people with advanced or metastatic cancer, and identify factors critical to implementation success within real-world settings. METHODS: Databases (MEDLINE; PsychINFO; CINAHL) and grey literature were searched for empirical publications and evaluations. Articles were screened for eligibility and data systematically extracted, charted and summarised using a modified scoping review methodology. Implementation factors were mapped using Proctor's implementation framework and the Consolidated Framework for Implementation Research 2.0. RESULTS: A total of 1691 publications were identified; 19 were eligible for inclusion (8 randomised controlled trials, 7 qualitative studies, 2 cohort studies, 2 mixed methods studies). Most (n=18) studies focused on tumour-specific support groups. Evidence supported professionally led support groups in reducing mood disturbances (n=5), distress (i.e. traumatic stress, depression) (n=4) and pain (n=2). Other benefits included social connectedness (n=6), addressing existential distress (n=5), information and knowledge (n=6), empowerment and sense of control (n=2), relationships with families (n=2) and communication with health professionals (n=2). Thirteen studies identified factors predicting successful adoption, implementation or sustainment, including acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%). Key determinants of successful implementation included group leaders' skills/experience, mode of operation, travelling distance, group composition and membership and resourcing. CONCLUSIONS: Professionally led tumour-specific support groups demonstrate effectiveness in reducing mood disturbances, distress and pain among patients. Successful implementation hinges on factors such as leadership expertise, operational methods and resource allocation. IMPLICATIONS FOR CANCER SURVIVORS: Professionally led support groups may fill an important gap in supportive care for people with advanced or metastatic cancer.

18.
BMJ Mil Health ; 2023 Nov 24.
Artigo em Inglês | MEDLINE | ID: mdl-38053268

RESUMO

INTRODUCTION: Wearable sensor technologies enable Defence to optimise human performance, remotely identify physiological abnormalities and enhance medical support. Maximising the acceptability of devices will ensure they are worn alongside other equipment. This study assessed the acceptability and comfort of four devices at different anatomical locations during military training. METHOD: A cross-sectional pilot study during a live firing infantry exercise or adventurous training assessed four anatomical locations concurrently over 5 days: finger, wrist, upper arm and chest. Participants rated comfort, acceptability and preference using a standardised questionnaire after 12 hours and 5 days of wear. RESULTS: Twenty-one regular British Army personnel soldiers participated, aged 24.4 (4.3) years. The upper arm location received the highest rating by participants for comfort, followed in order by wrist, finger and chest (p=0.002, Χ2=40.0). The finger was most commonly identified as uncomfortable during specific activities (76%), followed by chest (48%), wrist (23%) and upper arm devices (14%). There was no significant difference in participant confidence in the devices to collect data or allow movement, but there was a trend towards greater confidence in upper arm and wrist locations to stay in position than the others (p=0.059, Χ2=28.0). After 5 days of wear, 43% of participants said they preferred the upper arm for comfort, followed by wrist (36%), finger (24%) and chest (10%). 73% and 71% would wear the wrist and upper arm devices on deployed operations, compared with 29% and 24% for chest and finger devices, respectively. CONCLUSION: The upper arm location offered greater acceptability and comfort than finger, wrist or chest locations. It is essential to consider such findings from occupationally relevant settings when selecting wearable technology. A larger service evaluation in diverse settings is recommended to guide the choice of the most acceptable wearable devices across different equipment, roles and environments.

19.
JBI Evid Synth ; 2023 Nov 06.
Artigo em Inglês | MEDLINE | ID: mdl-37930416

RESUMO

OBJECTIVE: This scoping review will examine the literature describing models of care, barriers and facilitators of care, and gaps in care delivery for children and adolescents with a cancer predisposition syndrome (CPS). It will also explore how advanced practice nurses contribute to the delivery of care for children and adolescents with a CPS. INTRODUCTION: Cancer remains a leading cause of death in children and adolescents. Pediatric CPS clinics proactively aim for early diagnosis or prevention of cancer in children and adolescents with a CPS. Additionally, the holistic well-being of individuals requires a multidisciplinary team, including advanced practice nurses, to manage their complex health care needs. INCLUSION CRITERIA: This review will consider both published and unpublished literature exploring aspects of models of care and the role of the nurse in pediatric CPS clinics. Literature published in English from 1991 will be considered. METHODS: This scoping review will follow the JBI methodology for scoping reviews. The review will include searches in MEDLINE, Embase, and CINAHL Complete. Gray literature searches will be conducted in OAIster and Social Science Research Network (SSRN), as well as websites of hospitals in the USA and the UK with large pediatric cancer centers. Two reviewers will screen titles, abstracts, and full-text articles. An extraction table will be used to extract relevant data from all included articles and facilitate data analysis. Results will be presented in narrative and tabular format. REVIEW REGISTRATION: Open Science Framework osf.io/axkp7/.

20.
Patient Prefer Adherence ; 17: 2991-3000, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38027073

RESUMO

Purpose: To validate the Identification of Medication Adherence Barriers Questionnaire (IMAB-Q) as a tool to guide practitioners to identify patients who require support to take their medicines as prescribed, their key barriers to adherence and select relevant behaviour change techniques. Patients and Methods: Adults prescribed medication for cardiovascular disease prevention were recruited from nine community pharmacies in England. Participants completed the IMAB-Q comprising 30 items representing potential barriers to adherence developed from our previous mixed methods study (scoping review and focus groups) underpinned by the Theoretical Domains Framework. Participants also self-reported their adherence on a visual analogue scale (VAS) ranging from perfect adherence (100) to non-adherence (1). A subgroup of 30 participants completed the IMAB-Q twice to investigate test-retest reliability using weighted Kappa. Mokken scaling was used to investigate IMAB-Q structure. Spearman correlation was used to investigate IMAB-Q criterion validity compared to the VAS score. Results: From 1407 invitations, 608 valid responses were received. Respondents had a mean (SD) age of 70.12 (9.9) years and were prescribed a median (IQ) 4 (3, 6) medicines. Worry about unwanted effects (n = 212, 34.5%) and negative emotions evoked by medicine taking (n = 99, 16.1%) were most frequently reported. Mokken scaling did not organise related IMAB-Q items according to the TDF domains (scalability coefficient H = 0.3 to 0.6). Lower VAS self-reported adherence correlated with greater IMAB-Q reported barriers (rho = -0.14, p = 0.001). Test-retest reliability of IMAB-Q items ranged from kappa co-efficient 0.9 to 0.3 (p < 0.05). Conclusion: The IMAB-Q is valid and reliable for identifying people not adhering and their barriers to adherence. Each IMAB-Q item is linked to a TDF domain which in turn is linked to relevant behaviour change techniques. The IMAB-Q can therefore guide patients and practitioners to select strategies tailored to a patient's identified barriers.

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