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1.
Hum Genomics ; 18(1): 82, 2024 Jul 19.
Artículo en Inglés | MEDLINE | ID: mdl-39030587

RESUMEN

BACKGROUND: Pharmacogenomics (PGx) constitutes an important part of personalized medicine and has several clinical applications. PGx role in clinical practice is known, however, it has not been widely adopted yet. In this study, we aim to investigate the perspectives of Greek physicians regarding the implementation of PGx testing in clinical practice and the key issues associated with it. METHODS: Fourteen interviews were conducted with physicians of various specialties for which PGx applications are available. A semi-structured interview guide was utilized based on the Consolidated Framework for Implementation Research (CFIR) context and the Diffusion of Innovation model. Transcripts were coded independently and compared by two members of the research team. Descriptive statistics were generated using Microsoft Excel. RESULTS: Six main themes emerged: awareness and use of PGx testing; source of information; key stakeholders of the PGx supply chain, their interactions and change agents; clinical benefit and significance of PGx testing; barriers and lack of reimbursement; and recommendations to boost the PGx adoption rate. Most respondents were aware of PGx applications, but only three had already recommended PGx testing. Peer-reviewed journals along with clinical guidelines were regarded as the most used source of information while stakeholders of the PGx supply chain were discussed. PGx was considered that promote patient-centered care, enhance medication clinical effectiveness, decrease the risk of side effects, and reduce healthcare costs. Lack of reimbursement, scarcity of resources, and high PGx cost were the foremost barriers affecting PGx adoption. CONCLUSIONS: It was concluded that if case PGx testing is reimbursed and physicians' training is reinforced, PGx implementation will be boosted and improved shortly.


Asunto(s)
Farmacogenética , Pruebas de Farmacogenómica , Médicos , Humanos , Grecia , Pruebas de Farmacogenómica/métodos , Pruebas de Farmacogenómica/estadística & datos numéricos , Farmacogenética/métodos , Medicina de Precisión/métodos , Femenino , Masculino , Actitud del Personal de Salud , Investigación Cualitativa , Adulto , Persona de Mediana Edad
2.
Cancer ; 130(1): 86-95, 2024 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-37855867

RESUMEN

BACKGROUND: Previous studies have shown an association between living alone and cancer mortality; however, findings by sex and race/ethnicity have generally been inconsistent, and data by socioeconomic status are sparse. The association between living alone and cancer mortality by sex, race/ethnicity, and socioeconomic status in a nationally representative US cohort was examined. METHODS: Pooled 1998-2019 data for adults aged 18-64 years at enrollment from the National Health Interview Survey linked to the National Death Index (N = 473,648) with up to 22 years of follow-up were used to calculate hazard ratios (HRs) for the association between living alone and cancer mortality. RESULTS: Compared to adults living with others, adults living alone were at a higher risk of cancer death in the age-adjusted model (HR, 1.32; 95% CI, 1.25-1.39) and after additional adjustments for multiple sociodemographic characteristics and cancer risk factors (HR, 1.10; 95% CI, 1.04-1.16). Age-adjusted models stratified by sex, poverty level, and educational attainment showed similar associations between living alone and cancer mortality, but the association was stronger among non-Hispanic White adults (HR, 1.33; 95% CI, 1.25-1.42) than non-Hispanic Black adults (HR, 1.18; 95% CI, 1.05-1.32; p value for difference < .05) and did not exist in other racial/ethnic groups. These associations were attenuated but persisted in fully adjusted models among men (HR, 1.13; 95% CI, 1.05-1.23), women (HR, 1.09; 95% CI, 1.01-1.18), non-Hispanic White adults (HR, 1.13; 95% CI, 1.05-1.20), and adults with a college degree (HR, 1.22; 95% CI, 1.07-1.39). CONCLUSIONS: In this nationally representative study in the United States, adults living alone were at a higher risk of cancer death in several sociodemographic groups.


Asunto(s)
Etnicidad , Neoplasias , Adulto , Masculino , Humanos , Femenino , Estados Unidos/epidemiología , Ambiente en el Hogar , Clase Social , Pobreza , Factores Socioeconómicos
3.
Eur J Neurosci ; 2024 Sep 18.
Artículo en Inglés | MEDLINE | ID: mdl-39291392

RESUMEN

The relationship between external feedback and cognitive and neurophysiological performance has been extensively investigated in social neuroscience. However, few studies have considered the role of positive and negative external social feedback on electroencephalographic (EEG) and moderate stress response. Twenty-six healthy adults underwent a moderately stressful job interview consisting of a modified version of the Trier Social Stress Test. After each preparation, feedback was provided by an external committee, ranging from positive to negative with increasing impact on subjects. Stress response was measured by analysing response times (RTs) during the speech phase, while cognitive performance was assessed using a Stroop-like task before and after the test. Results indicate that RTs used to deliver the final speeches with negative feedback were significantly lower compared with those used for the initial speech with positive feedback. Moreover, a generalized improvement in Stroop-like task performance was observed in the post-SST compared with the pre-SST. Consistent with behavioural results, EEG data indicated greater delta, theta, and alpha band responses in right prefrontal and left central areas, and for delta and theta bands, also in parietal areas in response to positive feedback compared with aversive-neutral feedback, highlighting greater cognitive effort required by the former. Conversely, an increase in these bands in right and left temporal and left occipital areas was observed following negative and aversive feedback, indicative of an adaptive response to stress and emotion-regulatory processes. These findings suggest that negative social feedback in moderately stressful and noncritical conditions could contribute to improving individual cognitive performance.

4.
J Pediatr ; 274: 114193, 2024 Jul 14.
Artículo en Inglés | MEDLINE | ID: mdl-39004172

RESUMEN

OBJECTIVE: To explore racially minoritized families' perceptions on how, and if, physicians should address children's racial identity and concepts of racism within clinical settings. STUDY DESIGN: Parents of racially minoritized children, ages 5 through 18, were interviewed to explore experiences with racial identity formation, discrimination, and the extent to which they wanted pediatricians to address these topics. Children were included at the discretion of their parents. Interviews were transcribed, coded, and analyzed through a critical race theory lens based in constructivist grounded theory. RESULTS: Parents encouraged their children to embrace their racial identities but also wanted to shield them from negative experiences of racism to preserve identity safety. Parents felt pediatricians should address racial issues in a manner specific to their child's situation. Thoughtful inclusion of race-related questions, whether in discussion or on questionnaires, is essential to prevent tension in a therapeutic relationship. There was no consensus on the use of preclinical screening. Instead, families highlighted the importance of embracing humility, trust, and respect. CONCLUSIONS: Participant families have preferences for approaches to address the effects of racism on their children's health. Pediatricians should understand the importance of identity safety and approach their discussions with cultural humility, which includes self-reflection, empathy, active listening, and flexible negotiation. Above all, pediatricians need to create a safe environment for appropriate discussion of these issues.

5.
Hum Reprod ; 39(1): 147-153, 2024 Jan 05.
Artículo en Inglés | MEDLINE | ID: mdl-37944107

RESUMEN

STUDY QUESTION: What structural (logistical) and psychological challenges do patients who cryopreserve oocytes or embryos for medical reasons face, including possible barriers to using their frozen materials? SUMMARY ANSWER: The majority of women who underwent oocyte or embryo cryopreservation for medical reasons reported a desire to use their frozen oocytes or embryos but had been impeded by ongoing medical issues, the need for a gestational carrier, or the lack of a partner. WHAT IS KNOWN ALREADY: Current data suggest that many women who have frozen oocytes or embryos for medical indications are concerned about the prospect of infertility and have unique emotional and financial needs that differ from patients with infertility. Further, most patients have not returned to use their cryopreserved materials. STUDY DESIGN, SIZE, DURATION: This is a qualitative interview study of 42 people who cryopreserved between January 2012 and December 2021. Interviews were conducted between March 2021 and March 2022. PARTICIPANTS/MATERIALS, SETTING, METHODS: All participants were cisgender women who had undergone oocyte or embryo cryopreservation for medical indications at an academic fertility center. Participants were invited to interview by email if they were younger than 40 years old when their oocytes or embryos were cryopreserved. Interviews were conducted over the internet and transcribed verbatim. Data were analyzed using thematic analysis with the constant comparison method. MAIN RESULTS AND THE ROLE OF CHANCE: Saturation was reached at 42 interviews. The median age of participants was 35 years old (range 28-43) at interview and 31 years old (range 25-39) at cryopreservation. Of the 42 women, 30 had a cancer diagnosis, while 7 had non-cancer chronic medical conditions, and 5 had hereditary cancer susceptibility syndromes. There were 12 women who banked embryos and 30 who banked oocytes. The majority of women indicated a desire to use their cryopreserved materials, but many were unsure about how or when. Four had already used their frozen oocytes or embryos, while another four had conceived without assisted reproduction. The cryopreservation experience was described by the majority as highly emotionally challenging because they felt out of place among couples receiving infertility treatment and, for cancer patients, overwhelmed by the complex decisions to be made in a short time period. Common reported barriers to using frozen materials included ongoing medical issues preventing pregnancy, the need for a gestational carrier, the lack of a partner, and the desire for unassisted conception. Some were glad to have frozen oocytes or embryos to allow more time to meet a partner or if they were considering becoming single parents. LIMITATIONS, REASONS FOR CAUTION: The majority of participants had their oocytes or embryos frozen at a single, urban, academic fertility center, which may limit generalizability. We also could not calculate a response rate because the snowball technique was used to identify additional participants, so did not know the total number of people invited to participate. Like other interview studies, our study may be subject to response bias because those who agreed to participate may have particularly positive or negative views about their experiences. Furthermore, the mean follow-up time since freezing was relatively short (3.3 years, median 2.7 years), which may not have been enough time for some patients to use their frozen materials. WIDER IMPLICATIONS OF THE FINDINGS: Learning about the experiences of patients undergoing medically indicated oocyte and embryo cryopreservation can help clinicians better counsel these patients regarding decisions and hurdles they may encounter. We found that most patients had not returned to use their frozen materials because of ongoing medical issues, the need for a gestational carrier, lack of a partner, or the desire to attempt unassisted reproduction. STUDY FUNDING/COMPETING INTEREST(S): This study did not receive any funding. The authors of this study have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.


Asunto(s)
Infertilidad , Intención , Embarazo , Humanos , Femenino , Adulto , Criopreservación , Oocitos , Investigación Cualitativa , Estudios Retrospectivos
6.
Hum Reprod ; 39(8): 1664-1672, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-38901867

RESUMEN

STUDY QUESTION: Do adolescents and young adult women (YAW) with histologically proven endometriosis present a specific clinical history? SUMMARY ANSWER: Questionnaire screening of adolescents and YAW can identify clinical markers associated with histologically proven endometriosis. WHAT IS KNOWN ALREADY: Some validated questionaries can contribute to an earlier endometriosis diagnosis in adults. None of these scores, however, have been validated for adolescents or YAW. STUDY DESIGN, SIZE, DURATION: This was an observational cross-sectional study using prospectively recorded data performed between January 2005 and January 2020 in a single university tertiary referral centre for endometriosis diagnosis and management. After a thorough surgical examination of the abdomino-pelvic cavity, women with histologically proven endometriosis were allocated to the endometriosis group, and symptomatic women without evidence of endometriosis were allocated to the endometriosis-free control group. The endometriotic patients were allocated into two sub-groups according to their age: adolescent (≤20 years) and YAW (21-24 years). PARTICIPANTS/MATERIALS, SETTING, METHODS: Adolescents and YAW ≤24 years of age were operated for a symptomatic benign gynaecological condition with signed informed consent. A standardized questionnaire was prospectively completed in the month before the surgery and included epidemiological data, pelvic pain scores, family history of endometriosis, and symptoms experienced during adolescence. The study searched for correlations by univariate analysis to determine clinical markers of endometriosis in adolescents and YAW compared with endometriosis-free control patients. MAIN RESULTS AND THE ROLE OF CHANCE: Of the 262 study participants, 77 women were adolescents (≤20 years of age) and 185 patients (70.6%) were YAW. The endometriosis group included 118 patients (45.0%) and 144 (55.0%) were assigned to the control group. A family history of endometriosis, absenteeism from school during menstruation, history of fainting spells during menstruation, and prescription of oral contraceptive pills for intense dysmenorrhea were significantly more frequently observed in the endometriotic patients. The prevalence and mean pain scores for dysmenorrhea, deep dyspareunia, non-cyclic chronic pelvic pain and gastrointestinal and lower urinary tract symptoms were significantly greater in the endometriosis group, as was experienced rectal bleeding. LIMITATIONS, REASONS FOR CAUTION: The study was performed in a single referral centre that treats patients with potentially more severe disease. This questionnaire was evaluated on a population of patients with an indication for endometriosis surgery, which can also select patients with more severe disease. Women with asymptomatic endometriosis were not considered in this study. These factors can affect the external validity of this study. WIDER IMPLICATIONS OF THE FINDINGS: Patient interviews are relevant to the diagnosis of endometriosis in adolescents and YAW. Combined with imaging and clinical examination, this approach will enable earlier diagnosis and treatment, while remaining non-invasive and rapid. STUDY FUNDING/COMPETING INTEREST(S): The study received no funding from external sources. There are no conflicts of interest. TRIAL REGISTRATION NUMBER: N/A.


Asunto(s)
Endometriosis , Dolor Pélvico , Humanos , Endometriosis/diagnóstico , Endometriosis/complicaciones , Endometriosis/cirugía , Femenino , Adolescente , Estudios Transversales , Encuestas y Cuestionarios , Adulto Joven , Dolor Pélvico/diagnóstico , Dismenorrea/diagnóstico , Biomarcadores , Adulto , Estudios Prospectivos
7.
BMC Cancer ; 24(1): 783, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38951760

RESUMEN

BACKGROUND: The number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals. METHODS: To investigate experiences related to follow-up care, focus groups (n = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups (n = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons. DISCUSSION: The qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.


Asunto(s)
Supervivientes de Cáncer , Grupos Focales , Neoplasias , Investigación Cualitativa , Humanos , Supervivientes de Cáncer/psicología , Femenino , Masculino , Neoplasias/terapia , Neoplasias/psicología , Alemania , Necesidades y Demandas de Servicios de Salud , Persona de Mediana Edad , Adulto , Anciano
8.
BMC Cancer ; 24(1): 17, 2024 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-38166682

RESUMEN

BACKGROUND: Although the side effects of chemotherapy are frequently described in research studies, there is little evidence on how common they are in everyday clinical care. This study's goal was to assess the most prevalent short-term side effects experienced by patients with localized breast cancer, undergoing chemotherapy based on anthracyclines and taxane-containing treatments, at the medical oncology department of the Mohammed VI University Hospital of Marrakech, Morocco. METHODS: This was a descriptive study. We conducted a listening session at the outpatient department of the hospital with the help of a structured questionnaire. The session engaged 122 women who had undergone cycles of chemotherapy. A chi-square test was used to compare the incidence and relative risk of short side effects with both anthracycline and taxane-containing regimens. RESULTS: The average age of participants was 49.1 years. In both regimens, the findings highlighted the frequency and relative risk of the following adverse effects: systemic symptoms (fever, asthenia and sleep disorder), gastrointestinal toxicity (Vomiting, nausea, diarrhoea, constipation, mucositis and loss of appetite), dermatological toxicity (Skin reactions on hands/feet, nail toxicity, allergies, alopecia and peripheral edema), neurological toxicity (neuropathy), arthromyalgia and ocular toxicity. CONCLUSIONS: In conclusion, it is crucial for healthcare professionals to be conscious of the significance of these adverse effects. They must also know how to manage them. Likewise, the listening approach highlights its importance in the daily follow-up and monitoring of patients.


Asunto(s)
Neoplasias de la Mama , Humanos , Femenino , Persona de Mediana Edad , Neoplasias de la Mama/tratamiento farmacológico , Neoplasias de la Mama/etiología , Antraciclinas/efectos adversos , Marruecos/epidemiología , Taxoides/efectos adversos , Quimioterapia Adyuvante , Oncología Médica , Hospitales , Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos
9.
Am J Nephrol ; : 1-11, 2024 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-39173604

RESUMEN

INTRODUCTION: Chronic kidney disease (CKD) can have a profound impact on patients' lives. However, multinational data on patients' lived experience with CKD are scarce. METHODS: Individuals from the prospective cohort of DISCOVER CKD (NCT04034992), an observational cohort study, were recruited to participate in one-to-one telephone interviews to explore their lived experience with CKD. A target of 100 participant interviews was planned across four countries (Japan, Spain, the UK, and the USA). These qualitative interviews, lasting ∼60-90 min, were conducted in the local language by trained interviewers with specific experience in CKD, between January and June 2023. Transcribed interviews were translated into English for coding and analysis. Data were coded using qualitative research software. RESULTS: Of the 105 participants interviewed, 103 were included in the final analysis. The average time since CKD diagnosis was 9.5 years, and at least half (50.5%) of participants had CKD stage 3A or 3B. CKD diagnosis was an emotional experience, driven by worry (n = 29/103; 28.2%) and shock (n = 26/103; 25.2%), and participants often reported feeling inadequately informed. Additional information was frequently sought, either online or via other healthcare providers. The proportion of participants reporting no impacts of CKD on their lives was highest in those with CKD stage 1 and 2 (64.3%). Conversely, every participant in the CKD stage 5 on dialysis group reported some impact of CKD on their lives. Across all participants, the most reported impacts were anxiety or depression (37.9%) or ability to sleep (37.9%). The frequency of the reported impacts appeared to increase with disease severity, with the highest rates observed in the dialysis group. In that group, the most frequently reported impact was on the ability to work (80.0%). CONCLUSION: Findings from this multinational qualitative study suggest that patients may experience symptoms and signs of disease prior to diagnosis; however, these are often nonspecific and may not be directly associated with CKD. Once diagnosed, the burden of CKD can have a diverse, negative impact on various aspects of patients' lives. This highlights the need for early identification of at-risk individuals, and the importance of early CKD diagnosis and management with guideline-directed therapies to either prevent further deterioration of CKD or slow its progression, thus reducing symptom burden and improving quality of life.

10.
Psychol Med ; : 1-14, 2024 Sep 26.
Artículo en Inglés | MEDLINE | ID: mdl-39324396

RESUMEN

Posttraumatic stress disorder (PTSD) is one of the most serious and incapacitating mental diseases that can result from trauma exposure. The exact prevalence of this disorder is not known as the literature provides very different results, ranging from 2.5% to 74%. The aim of this umbrella review is to provide an estimation of PTSD prevalence and to clarify whether the prevalence depends on the assessment methods applied (structured interview v. self-report questionnaire) and on the nature of the traumatic event (interpersonal v. not-interpersonal). A systematic search of major databases and additional sources (Google Scholar, EBSCO, Web of Science, PubMed, Galileo Discovery) was conducted. Fifty-nine reviews met the criteria of this umbrella review. Overall PTSD prevalence was 23.95% (95% confidence interval 95% CI 20.74-27.15), with no publication bias or significant small-study effects, but a high level of heterogeneity between meta-analyses. Sensitivities analyses revealed that these results do not change after removing meta-analysis also including data from underage participants (23.03%, 95% CI 18.58-27.48), nor after excluding meta-analysis of low quality (24.26%, 95% CI 20.46-28.06). Regarding the impact of diagnostic instruments on PTSD prevalence, the results revealed a lack of significant differences in PTSD prevalence when structured v. self-report instruments were applied (p = 0.0835). Finally, PTSD prevalence did not differ following event of intentional (25.42%, 95% CI 19.76-31.09) or not intentional (22.48%, 95% CI 17.22-27.73) nature (p = 0.4598). The present umbrella review establishes a robust foundation for future research and provides valuable insights on PTSD prevalence.

11.
J Neural Transm (Vienna) ; 131(2): 173-180, 2024 02.
Artículo en Inglés | MEDLINE | ID: mdl-38200268

RESUMEN

OBJECTIVES: The Caregiver's Inventory Neuropsychological Diagnosis Dementia (CINDD) is an easy tool designed to quantify cognitive, behavioural and functional deficits of patients with cognitive impairment. Aim of the present study was to analyse the psychometric properties of the CINDD in Mild Cognitive Impairment (MCI) and Dementia (D). DESIGN, SETTING AND PARTICIPANTS: The CINDD, composed by 9 sub-domains, was administered to fifty-six caregivers of patients with different types of dementia (D) and 44 caregivers of patients with MCI. All patients underwent an extensive neuropsychological assessment, the Neuropsychiatric Inventory (NPI) and functional autonomy scales. The reliability, convergent construct validity and possible cut-off of CINND were measured by Cronbach's alpha (α), Pearson's correlation and ROC analysis, respectively. RESULTS: The D and MCI patients differed only for age (p=0.006). The internal consistency of CINDD was high (α= 0.969). The α-value for each CINDD domain was considered acceptable, except the mood domain (α=0.209). The CINDD total score correlated with cognitive screening tests; each domain of the CINDD correlated with the corresponding score from either tests or NPI (p<0.05), except for visuo-spatial perception skills and apathy. A screening cut-off equal to 59, can be used discriminate D from MCI (Sensitivity=0.70, Specificity=0.57). CONCLUSION: The CINDD is a feasible, accurate and reliable tool for the assessment of cognitive and behavioural difficulties in patients with different degree of cognitive impairment. It may be used to quantify and monitor caregiver-reported ecological data in both clinical and research settings.


Asunto(s)
Disfunción Cognitiva , Demencia , Humanos , Cuidadores/psicología , Psicometría , Reproducibilidad de los Resultados , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/psicología , Pruebas Neuropsicológicas
12.
Psychooncology ; 33(1): e6254, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38047708

RESUMEN

BACKGROUND: Supporting those living with and beyond cancer to self-manage their health can optimise health-related quality of life and reduce symptom burden. Self-management support (SMS) programmes have been shown to be effective, but uptake is often low. This qualitative study aimed to identify experienced and perceived enablers and barriers to accessing SMS services among those who had completed primary cancer treatment and were living with and beyond cancer. METHODS: Participants were recruited through social media and cancer advocacy groups. Semi-structured telephone and online interviews were conducted. Transcripts were coded inductively based on participants' reported experiences. Statements related to factors that enable or inhibit access to SMS were then mapped to the Theoretical Domains Framework (TDF). RESULTS: Twenty-six people participated. Six themes explain the factors that act as barriers and enablers which mapped to 11 TDF domains. Lack of knowledge of available SMS was a prominent barrier, as well as inaccessible services due to timing and place of delivery. Lack of confidence and emotional factors including fear were barriers to seeking SMS. Social influences shaped knowledge, attitudes and readiness to access SMS. Perceptions of SMS service goals and if in alignment with self-identity, intentions and goals also shaped decisions around accessing support. CONCLUSIONS: While lack of knowledge and provider signposting were common barriers, findings suggest that other psychosocial and emotional factors may be barriers, even if SMS services are accessible. Findings are relevant for oncology healthcare services developing strategies to increase reach of SMS for those living with and beyond cancer.


Asunto(s)
Neoplasias , Automanejo , Humanos , Calidad de Vida , Investigación Cualitativa , Cuidados Paliativos , Intención , Neoplasias/terapia
13.
Psychooncology ; 33(5): e6344, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38697784

RESUMEN

OBJECTIVE: Colorectal cancer (CRC) incidence is rising among adults under the age of 50 (early- or young-onset CRC). This population is more likely to have advanced-stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision-making during a diagnosis of young-onset CRC. METHODS: Semi-structured interviews were conducted with 17 participants with young-onset CRC diagnosed in 2021-2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7 months (range 1-13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis. RESULTS: Five themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision-making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision-making, utilising personal resources to access timely care. Their decisions were shaped by stage-of-life considerations, including employment and caring for a young family, with the COVID-19 pandemic adding "…a whole other layer of complexity" to the process. CONCLUSIONS: Younger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID-19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.


Asunto(s)
Neoplasias Colorrectales , Toma de Decisiones , Investigación Cualitativa , Humanos , Neoplasias Colorrectales/psicología , Neoplasias Colorrectales/diagnóstico , Masculino , Femenino , Adulto , Persona de Mediana Edad , COVID-19/psicología , Victoria , Edad de Inicio , Entrevistas como Asunto , Adulto Joven , SARS-CoV-2
14.
Psychooncology ; 33(6): e6364, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38824493

RESUMEN

OBJECTIVE: Clinical fear of cancer recurrence (FCR) was recently defined by a group of experts during a Delphi study. Five criteria were agreed upon, namely: (a) high levels of preoccupation, (b) high levels of worry, (c) that are persistent, (d) hypervigilance and hypersensitivity to physical sensations that e) may result in functional impairment. No existing instruments comprehensively capture all these criteria for clinical FCR. METHODS: To remedy this gap, a set of three patient-reported outcome instruments including a one-item screener, self-report questionnaire, and semi-structured clinical interview, named the Ottawa Clinical Fear of Recurrence instruments, were developed. To do so, the research team first conducted a literature review of potential items. Additional FCR experts discussed the content of the screener and interview. The self-report's items were assessed for content validity by the same expert panel using Likert ratings and the Content Validity Index to narrow down the number of items. The three instruments were piloted with a group of cancer survivors to assess face validity following the European Organization for Research and Treatment of Cancer recommendations. RESULTS: The literature review and content validity assessment led to a final draft pre-pilot of 23 potential items for the self-report questionnaire. The instruments were piloted. Pilot study participants suggested changing wording and response options (particularly for the self-report) for greater clarity. CONCLUSIONS: Based on the feedback received, minor modifications were made, mostly for the self-report. In general, content and face validity for the three instruments were good for both experts and cancer survivors.


Asunto(s)
Miedo , Recurrencia Local de Neoplasia , Autoinforme , Humanos , Miedo/psicología , Encuestas y Cuestionarios/normas , Femenino , Reproducibilidad de los Resultados , Recurrencia Local de Neoplasia/psicología , Persona de Mediana Edad , Masculino , Psicometría/instrumentación , Adulto , Supervivientes de Cáncer/psicología , Anciano , Proyectos Piloto , Entrevistas como Asunto , Neoplasias/psicología , Medición de Resultados Informados por el Paciente , Ansiedad/psicología
15.
Prev Med ; 185: 108051, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38906274

RESUMEN

BACKGROUND: Current measures of condition-specific disabilities or those capturing only severe limitations may underestimate disability prevalence, including among Veterans. OBJECTIVES: To develop a comprehensive measure to characterize and compare disabilities among US Veterans and non-Veterans. METHODS: Using 2015-2018 pooled cross-sectional National Health Interview Survey data, we compared the frequency and survey-weighted prevalence of non-mutually exclusive sensory, social, and physical disabilities by Veteran status. We developed a measure for and examined the frequency and survey-weighted prevalence of eight mutually exclusive disability categories-sensory only; physical only; social only; sensory and physical; social and sensory; physical and social; and sensory, social, and physical. RESULTS: Among 118,818 NHIS respondents, 11,943 were Veterans. Veterans had a greater prevalence than non-Veterans of non-mutually exclusive physical [52.01% vs. 34.68% (p < 0.001)], sensory [44.47% vs. 21.79% (p < 0.001)], and social [17.20% vs. 11.61% (p < 0.001)] disabilities (after survey-weighting). The most frequently reported mutually exclusive disability categories for both Veterans and non-Veterans were sensory and physical (19.20% and 8.02%, p < 0.001) and physical only (16.24% and 15.69%, p = 0.216) (after survey-weighting). The least frequently reported mutually exclusive disability categories for both Veterans and non-Veterans were social only (0.31% and 0.44%, p = 0.136) and sensory and social (0.32% and 0.20%, respectively, 0.026) (after survey-weighting). CONCLUSIONS: Our disability metric demonstrates that Veterans have a higher disability prevalence than non-Veterans, and a higher prevalence than previously reported. Public policy and future research should consider this broader definition of disability to more fully account for the variable needs of people with disabilities.


Asunto(s)
Evaluación de la Discapacidad , Personas con Discapacidad , Encuestas Epidemiológicas , Veteranos , Humanos , Masculino , Femenino , Veteranos/estadística & datos numéricos , Personas con Discapacidad/estadística & datos numéricos , Estados Unidos/epidemiología , Persona de Mediana Edad , Estudios Transversales , Prevalencia , Adulto , Anciano , Adulto Joven
16.
Value Health ; 27(6): 784-793, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38467189

RESUMEN

OBJECTIVES: Time trade-off (TTO) and discrete choice experiment (DCE) preference-elicitation techniques can be administered using face-to-face interviews (F2F), unassisted online (UO) surveys, or remote-assisted (RA) interviews. The objective of this study was to explore how the mode of administration affects the quality and reliability of preference-elicitation data. METHODS: EQ-5D-5L health states were valued using composite TTO (cTTO) and DCE approaches by the UK general population. Participants were allocated to 1 of 2 study groups. Group A completed both F2F and UO surveys (n = 271), and group B completed both RA and UO surveys (n = 223). The feasibility of survey completion and the reliability and face-validity of data collected were compared across all modes of administration. RESULTS: Fewer participants reported receiving sufficient guidance on the cTTO tasks during the UO survey compared with the 2 assisted modes. Participants across all modes typically reported receiving sufficient guidance on the DCE tasks. cTTO data were less reliable from the UO survey compared with both assisted modes, but there were no differences in DCE data reliability. cTTO data from all modes demonstrated face-validity; however, the UO survey produced higher utilities for moderate and severe health states than both assisted modes. Both F2F and RA modes provided comparably reliable data. CONCLUSIONS: The reliability of DCE data is not affected by the mode of administration. Interviewer-assisted modes of administration (F2F or RA) yield more reliable cTTO data than unassisted surveys. Both F2F and RA surveys produced similar-quality data.


Asunto(s)
Conducta de Elección , Prioridad del Paciente , Calidad de Vida , Humanos , Femenino , Masculino , Persona de Mediana Edad , Adulto , Reproducibilidad de los Resultados , Reino Unido , Encuestas y Cuestionarios , Anciano , Estado de Salud , Adulto Joven , Entrevistas como Asunto , Adolescente
17.
Value Health ; 27(2): 190-198, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38043713

RESUMEN

OBJECTIVES: The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers. METHODS: A proxy report EQ-5D-Y-5L was administered to caregivers of children with ID. Using cognitive think-aloud interviewing, participants were encouraged to provide the reasoning for their choices, assess the questions' relevance, comprehensibility, and comprehensiveness, and comment on the tool's strengths and weaknesses. Qualitative content analysis used both directed (deductive) and conventional (inductive) methods. RESULTS: There were 28 interviews with 30 caregivers of children with ID (aged 8-22 years, 17 boys, with autism spectrum disorder, cerebral palsy, Down syndrome, and rare genetic disorders). The EQ-5D-Y-5L was considered clear, concise, and largely relevant, but insufficiently comprehensive for this population. Interviewees sought clarification of the definition of HRQoL, whether it included unchanging impairments (vs fluctuating health states), and what basis of comparison to use (child or peer). Many interviewees suggested inclusion of questions for other domains, including communication and social engagement, equipment and human supports required, and a wider range of mental health questions. CONCLUSIONS: The study suggests that further work is required to ensure accurate responses to the EQ-5D-Y-5L from caregivers of children with ID and to describe these children adequately.


Asunto(s)
Trastorno del Espectro Autista , Discapacidad Intelectual , Masculino , Femenino , Niño , Humanos , Calidad de Vida/psicología , Encuestas y Cuestionarios , Psicometría , Reproducibilidad de los Resultados
18.
Clin Chem Lab Med ; 2024 Sep 23.
Artículo en Inglés | MEDLINE | ID: mdl-39308342

RESUMEN

OBJECTIVES: Lab testing is a high-volume activity that is often overused, leading to wasted resources and inappropriate care. Improving test ordering practices in tertiary care involves deciding where to focus scarce intervention resources, but clear guidance on how to optimize these resources is lacking. We aimed to explore context-sensitive factors and processes that inform individual decisions about laboratory stewardship interventions by speaking to key interest holders in this area. METHODS: We conducted semi-structured interviews with test-ordering intervention development experts and authors of test-ordering guidance documents to explore five broad topics: 1) processes used to prioritize tests for intervention; 2) factors considered when deciding which tests to target; 3) measurement of these factors; 4) interventions selected; 5) suggestions for a framework to support these decisions. Transcripts were double coded using directed-content and thematic analysis. RESULTS: We interviewed 14 intervention development experts. Experts noted they frequently consider test volume, test value, and patient care when deciding on a test to target. Experts indicated that quantifying many relevant factors was challenging. Processes to support these decisions often involved examining local data, obtaining buy-in, and relying on an existing guideline. Suggestions for building a framework emphasized the importance of collaboration, consideration of context and resources, and starting with "easy wins" to gain support and experience. CONCLUSIONS: Our study provides insight into the factors and processes experts consider when deciding which tests to target for intervention and can inform the development of a framework to guide the selection of tests for intervention and guideline development.

19.
Int J Equity Health ; 23(1): 193, 2024 Sep 27.
Artículo en Inglés | MEDLINE | ID: mdl-39334358

RESUMEN

BACKGROUND: In China, national immunization program (NIP) vaccines benefit from robust financial support and have achieved high coverage. Non-NIP vaccines rely on fragmented funding sources, mostly out-of-pocket payment, and face sub-optimal and inequitable coverage. Sustainable financing needs to be secured for addressing equity in non-NIP vaccine delivery. However, discussion and understanding of this issue remain limited. This study aims to analyze the current situation, comprehensively identify challenges and opportunities in non-NIP vaccine financing, and offer suggestions to enhance vaccine uptake and improve public health. METHODS: Between July and December 2023, we conducted a series of semi-structured, in-person interviews with 55 stakeholders from the Health Bureau, Centers for Disease Control and Prevention, Medical Insurance Bureau, and Finance Bureau across five provinces in China. Participants were selected through stratified sampling, and the interviews mainly included their involvement in non-NIP vaccine financing, challenges faced, and strategies for improvement to enhance financing performance. Informed consent was obtained, and thematic analysis was used to analyze the data. RESULTS: Non-NIP vaccine financing sources include out-of-pocket payments, government fiscal, health insurance and other external funds. These four channels differ in vaccine types covered, costs, and target populations, each with unique challenges and opportunities. High out-of-pocket costs remain a significant barrier to equitable vaccine uptake, while market competition has lowered the vaccine price and improved accessibility. Local fiscal support for free vaccination programs faces challenges related to sustainability and regional disparity, though governmental commitment to vaccination is growing. Nevertheless, centralized procurement organized by the government has lowered the price and reduced the financial burden. Despite legal restrictions on using basic health insurance for vaccinations and limited commercial insurance options, private medical savings accounts and mutual-aid mechanisms present new opportunities. Although the scope and impact of external support are limited, it has successfully increased awareness and social attention to vaccination. CONCLUSION: Relying on individual payments as the main financing channel for non-NIP vaccines is unsustainable and inadequate for ensuring universal vaccine access. A concerted and synergistic approach is essential to ensure sufficient, sustainable resources and enhance public financial management to improve equity in the non-NIP vaccines.


Asunto(s)
Programas de Inmunización , Investigación Cualitativa , Vacunas , Humanos , China , Programas de Inmunización/economía , Vacunas/economía , Seguro de Salud/economía , Gastos en Salud , Equidad en Salud , Financiación Gubernamental , Cobertura de Vacunación , Entrevistas como Asunto
20.
Eur J Epidemiol ; 2024 Sep 18.
Artículo en Inglés | MEDLINE | ID: mdl-39294527

RESUMEN

Self-medication (SM) forms an important part of public health strategy. Nonetheless, little research has been performed to understand the current state of self-medication in the European Union (EU). Utilizing data from the third wave of the European Health Interview Surveys, this study finds an estimated SM prevalence of 34.3% in the EU (95%CI = 34.1-34.5%; n = 255,758). SM prevalence, as well as SM prevalence inequality between men and women, varies substantially between EU member countries. Via multivariable analysis, we also identify a number of variables associated with SM, most notably the substantial impact of health systems on SM behavior (Adjusted Odds Ratio [AOR] = 4.00; 95% Confidence Interval [95%CI] = 3.81-4.21). Several demographics are also associated with greater SM prevalence, including those aged 25-44 (versus ages 75+: AOR = 1.21; 95%CI = 1.12-1.31), women (AOR = 1.74; 95%CI = 1.68-1.81), immigrants born in other EU states (AOR = 1.16; 95%CI = 1.04-1.30), those with higher education (AOR = 1.83; 95%CI = 1.60-2.09), and urban dwellers (AOR = 1.14; 95%CI = 1.04-1.30). Additionally, long-standing health problems (AOR = 1.39; 95%CI = 1.33-1.45), visits to doctors (both general practitioners and specialists) (AOR = 1.21, 95%CIs = 1.15-1.26, 1.17-1.26), and unmet needs for health care due to waiting lists (AOR = 1.38; 95%CI = 1.23-1.55) or inability to afford medical examinations/treatment (AOR = 1.27; 95%CI = 1.12-1.42) serve as conditioners for SM. We also find that smoking (AOR = 1.05; 95%CI = 1.01-1.10), vaping (AOR = 1.19; 95%CI = 1.06-1.32), drinking alcohol (AOR = 1.23; 95%CI = 1.19-1.28), and higher levels of physical activity (AOR = 1.27; 95%CI = 1.22-1.32) are factors associated with SM. Analysis of these variables reveals that though women self-medicate more than men, the patterns that govern their consumption are similar.

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