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1.
Expert Rev Hematol ; 17(10): 741-748, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-39252482

RESUMEN

INTRODUCTION: Hemophilia A is managed with coagulation clotting factor VIII (FVIII) therapy that poses significant challenges, such as a high treatment burden, immunogenicity, inconsistent hemostatic cover, poor treatment outcomes, and musculoskeletal progression despite adequate prophylactic treatment. Various non-factor therapies, such as several natural anticoagulant inhibitors and factor FVIII mimetics, have been developed to address these unmet needs. However, the role of emicizumab in addressing these unmet needs remains underexplored. AREAS COVERED: This review delves into the evolution of hemophilia A replacement clotting therapy from plasma-derived products to recombinant products and, more recently, nonfactor therapies. It underscores the unmet needs of replacement therapy and explores the nonfactor therapies developed to address them. The review then comprehensively summarizes the clinical trial and real-world experience data, demonstrating how emicizumab tackles these unsatisfied demands. EXPERT OPINION: Replacement clotting factor therapies as the standard of care has exposed several needs that have yet to be addressed. However, data from numerous emicizumab clinical trials and real-world experience offer a promising outlook, suggesting that it may effectively address many unmet needs. As hemophilia treatment goals continue to evolve, the role of currently developed nonfactor therapies in hemophilia management is yet to be fully defined.


Asunto(s)
Anticuerpos Biespecíficos , Anticuerpos Monoclonales Humanizados , Factor VIII , Hemofilia A , Hemofilia A/tratamiento farmacológico , Humanos , Anticuerpos Monoclonales Humanizados/uso terapéutico , Anticuerpos Biespecíficos/uso terapéutico , Factor VIII/uso terapéutico , Manejo de la Enfermedad
2.
Health Promot Int ; 39(5)2024 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-39284918

RESUMEN

The growing financial burden of noncommunicable diseases (NCDs) in sub-Saharan Africa (SSA) hinders the attainment of the sustainable development goals. However, there has been no updated synthesis of evidence in this regard. Therefore, our study summarizes the current evidence in the literature and identifies the gaps. We systematically search relevant databases (PubMed, Scopus, ProQuest) between 2015 and 2023, focusing on empirical studies on NCDs and their financial burden indicators, namely, catastrophic health expenditure (CHE), impoverishment, coping strategies, crowding-out effects and unmet needs for financial reasons (UNFRs) in SSA. We examined the distribution of the indicators, their magnitudes, methodological approaches and the depth of analysis. The 71 included studies mostly came from single-country (n = 64), facility-based (n = 52) research in low-income (n = 22), lower-middle-income (n = 47) and upper-middle-income (n = 10) countries in SSA. Approximately 50% of the countries lacked studies (n = 25), with 46% coming from West Africa. Cancer, cardiovascular disease (CVD) and diabetes were the most commonly studied NCDs, with cancer and CVD causing the most financial burden. The review revealed methodological deficiencies related to lack of depth, equity analysis and robustness. CHE was high (up to 95.2%) in lower-middle-income countries but low in low-income and upper-middle-income countries. UNFR was almost 100% in both low-income and lower-middle-income countries. The use of extreme coping strategies was most common in low-income countries. There are no studies on crowding-out effect and pandemic-related UNFR. This study underscores the importance of expanded research that refines the methodological estimation of the financial burden of NCDs in SSA for equity implications and policy recommendations.


Asunto(s)
Costo de Enfermedad , Gastos en Salud , Enfermedades no Transmisibles , Enfermedades no Transmisibles/economía , Humanos , África del Sur del Sahara , Gastos en Salud/estadística & datos numéricos , Pobreza
3.
J Cancer Surviv ; 2024 Sep 06.
Artículo en Inglés | MEDLINE | ID: mdl-39240428

RESUMEN

BACKGROUND: The increasing population of cancer survivors poses a significant challenge for healthcare systems globally, necessitating comprehensive post-treatment care to address diverse physical, psychological, and social needs. OBJECTIVE: This systematic review aims to synthesize and critically evaluate the current evidence concerning the unmet needs for nursing services among cancer survivors, spanning various dimensions of survivorship care. METHODS: A systematic search was conducted across major databases, including PubMed, CINAHL, and PsycINFO, to identify relevant studies investigating the unmet needs and health-related quality-of-life (HRQOL) of nursing services led by nurses among cancer survivors. The final search update was conducted in June 2024. Unmet needs dimensions were categorized by the biopsychosocial-spiritual framework. RESULTS: Of the 9503 records searched, 18 studies were included. This review revealed mixed findings in the domains of unmet needs and interventions aimed at addressing them. While nurse-led interventions showed promise in addressing physical and daily living needs, outcomes related to psychological and emotional needs varied across studies. Additionally, nurse-led interventions were effective in addressing patient-clinician communication and health system/information needs, although statistical significance was not consistently observed. HRQOL assessments using general and cancer-specific measures yielded mixed findings. CONCLUSIONS: Despite limitations of the risk of bias of included studies and weak study designs for evaluating nurse-led intervention effects for cancer survivors, the findings highlight the potential of nursing practice to significantly contribute to improving unmet needs of physical, psychological, and social perspectives and ultimately improving their HRQOL. However, the impact on the spiritual needs of nursing care services is limited by the low number of studies. IMPLICATIONS FOR CANCER SURVIVORS: By providing comprehensive support and management, nursing practice can enhance post-treatment outcomes and HRQOL for cancer survivors, contributing to more patient-centered and effective care delivery. More rigorous research considering a biopsychosocial-spiritual perspective to help cancer survivors improve HRQOL is needed.

4.
Artículo en Inglés | MEDLINE | ID: mdl-39230736

RESUMEN

PURPOSE: To explore the impact of unmet community service demands on loneliness among older adults. METHODS: Based on the longitudinal tracking data of CLHLS (2008-2018), latent growth curve model (LGCM) was used to describe the trajectory of loneliness among older adults. Panel regression was used to analyze the impact of unmet community service demands on loneliness, and latent classification analysis (LCA) was used to classify the older adults and analyze the differences in loneliness among different types of older adults. RESULTS: A total of 1445 older people participated in all four surveys, and 22.4% of them reported feeling lonely. From 2008 to 2018, there was a significant non-linear increase in loneliness, with average values of 1.77, 1.81, 1.83, and 1.96, respectively. The level of community service supply (1.31) was far from meeting the demand level (5.11). Unmet community service demands were associated with a higher prevalence of loneliness (ß = 0.012, P = 0.003, 95% CI = [0.004, 0.020]). In addition, according to the demand difference for community services, older adults were classified into the comprehensive demand type (Type I) and the medical demand type (Type II). The loneliness of Type I older adults was significantly higher than that of Type II (P < 0.05). CONCLUSIONS: With the passage of time, loneliness of older adults is showing an accelerating upward trend. Unmet community services can lead to enhanced loneliness among older adults, and the higher the demand for community services, the stronger the loneliness. The government should increase the supply of community services to meet the basic and socio-emotional needs of the older adults to reduce loneliness.

5.
J Headache Pain ; 25(1): 134, 2024 Aug 19.
Artículo en Inglés | MEDLINE | ID: mdl-39160483

RESUMEN

OBJECTIVE: To assess rates of traversing barriers to care to access optimal clinical outcomes in people with migraine internationally. BACKGROUND: People in need of medical care for migraine should consult a health care professional knowledgeable in migraine management, obtain an accurate diagnosis, and receive an individualized treatment plan, which includes scientific society guideline-recommended treatments where appropriate. METHODS: The Chronic Migraine Epidemiology and Outcomes-International (CaMEO-I) Study was a cross-sectional, web-based survey conducted from July 2021 through March 2022 in Canada, France, Germany, Japan, the United Kingdom, and the United States (US). Respondents who met modified International Classification of Headache Disorders, 3rd edition, criteria for migraine and had Migraine Disability Assessment Scale (MIDAS) scores of ≥ 6 (i.e., mild, moderate, or severe disability) were deemed to need medical care and were included in this analysis. Minimally effective treatment required that participants were currently consulting a health care professional for headache (barrier 1), reported an accurate diagnosis (barrier 2), and reported use of minimally appropriate pharmacologic treatment (barrier 3; based on American Headache Society 2021 Consensus Statement recommendations). Proportions of respondents who successfully traversed each barrier were calculated, and chi-square tests were used to assess overall difference among countries. RESULTS: Among 14,492 respondents with migraine, 8,330 had MIDAS scores of ≥ 6, were deemed in need of medical care, and were included in this analysis. Current headache consultation was reported by 35.1% (2926/8330) of respondents. Compared with the US, consultation rates and diagnosis rates were statistically significantly lower in all other countries except France where they were statistically significantly higher. Total appropriate treatment rates were also statistically significantly lower in all other countries compared with the US except France, which did not differ from the US. All 3 barriers were traversed by only 11.5% (955/8330) of respondents, with differences among countries (P < 0.001). CONCLUSIONS: Of people with migraine in need of medical care for migraine, less than 15% traverse all 3 barriers to care. Although rates of consultation, diagnosis, and treatment differed among countries, improvements are needed in all countries studied to reduce the global burden of migraine. TRIAL REGISTRATION: NA.


Asunto(s)
Accesibilidad a los Servicios de Salud , Trastornos Migrañosos , Humanos , Trastornos Migrañosos/epidemiología , Trastornos Migrañosos/terapia , Trastornos Migrañosos/diagnóstico , Estudios Transversales , Femenino , Masculino , Adulto , Canadá/epidemiología , Estados Unidos/epidemiología , Persona de Mediana Edad , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/normas , Japón/epidemiología , Alemania/epidemiología , Francia/epidemiología , Reino Unido/epidemiología
6.
BMC Public Health ; 24(1): 2287, 2024 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-39175008

RESUMEN

INTRODUCTION: Hypertension is highly prevalent in India, but the proportion of patients achieving blood pressure control remains low. Efforts have been made to expand health insurance coverage nationwide with the aim of improving overall healthcare access. It is critical to understand the role of health insurance coverage in improving hypertension care. METHODS: We used secondary data from the nationally representative sample of adults aged 15-49 years from the 2015-2016 National Family Health Survey (NFHS) in India. We defined the hypertension care cascade as four successive steps of (1) screened, (2) diagnosed, (3) treated, and (4) controlled, and operationalized these variables using blood pressure measurements and self-reports. We employed household fixed effect models that conceptually matched people with and without insurance within the household, to estimate the impact of insurance coverage on the likelihood of reaching each care cascade step, while controlling for a wide range of additional individual-level variables. RESULTS: In all 130,151 included individuals with hypertension, 20.4% reported having health insurance. For the insured hypertensive population, 79.8% (95% Confidence Interval: 79.3%-80.3%) were screened, 49.6% (49.0%-50.2%) diagnosed, 14.3% (13.9%-14.7%) treated, and 7.9% (7.6%-8.2%) controlled, marginally higher than the percentages for the uninsured 79.8% (79.5%-80.0%), 48.2% (47.9%-48.6%), 13.3% (13.1%-13.5%), and 7.5% (7.4%-7.7%) for each cascade step, respectively. From the household fixed effects model, health insurance did not show significant impact on the hypertension care cascade, with the estimated relative risks of health insurance 0.97 (0.93-1.02), 0.97 (0.91-1.03), 0.95 (0.77-1.30), and 0.97 (0.65-1.10) for each cascade step, respectively. We further performed stratified analyses by sociodemographic and behavioral risk factors and a sensitivity analysis with district fixed effects, all of which yielded results that confirmed the robustness of our main findings. CONCLUSIONS: Health insurance did not show significant impact on improving hypertension care cascade among young and middle-aged adults with hypertension in India. Innovative strategies for overcoming practical barriers to healthcare services in addition to improving financial access are needed to address the large unmet need for hypertension care.


Asunto(s)
Accesibilidad a los Servicios de Salud , Hipertensión , Cobertura del Seguro , Seguro de Salud , Humanos , Hipertensión/epidemiología , Hipertensión/terapia , India , Adulto , Persona de Mediana Edad , Masculino , Femenino , Seguro de Salud/estadística & datos numéricos , Adolescente , Adulto Joven , Cobertura del Seguro/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Encuestas Epidemiológicas , Composición Familiar
7.
Orphanet J Rare Dis ; 19(1): 291, 2024 Aug 10.
Artículo en Inglés | MEDLINE | ID: mdl-39127675

RESUMEN

BACKGROUND: Hereditary Angioedema (HAE) due to C1-inhibitor deficiency (C1INH) is a rare condition, clinically characterised by recurrent swelling. The unpredictability of attacks affects the patients' quality of life (QoL). HAE patients and their families have vast unmet physical, psychological, and social needs. A human-centred design (HCD) approach to describing the needs of different user types is to utilise personas, a data-driven narrative tool for communicating user archetypes that capture the individuals' attitudes, goals, and behaviours. The aim of this study was to create and analyse personas based on HAE patients' and their caregivers' interviews. Semi-structured interviews were conducted through anthropological conversations with patients, patient-caregivers (double role of patient and caregiver), and non-affected caregivers. Qualitative and quantitative insights from analyses formed the basis to create personas. RESULTS: We enrolled 17 subjects: 15 patients (6 of them were patient-caregivers) and 2 non-affected caregivers. The mean age of participants was 50.3 ± 14.4 years. Eight patients were on treatment with prophylactic therapy. The mean percentage score of Angioedema Quality of Life (AE-QoL) for HAE patients was 19.8 ± 12.0. Six personas were identified describing the participants' personal history, disease management, and needs: four personas referred to patients, one to patient-caregivers, and one non-affected caregiver personas were identified. Across patient personas, the most expressed needs were psychological support and better awareness amongst healthcare professionals. Caregivers, on their side, desired better information about the disease, including the latest therapies, and higher awareness within the community. CONCLUSION: A Human Centred Innovative Approach Based on Persona extends beyond the physical symptoms to encompass the psychological and social aspects of the individual's well-being also including the family in the evaluation.


Asunto(s)
Angioedemas Hereditarios , Cuidadores , Calidad de Vida , Humanos , Angioedemas Hereditarios/psicología , Femenino , Masculino , Adulto , Persona de Mediana Edad , Cuidadores/psicología , Anciano
8.
Ophthalmic Epidemiol ; : 1-7, 2024 Aug 15.
Artículo en Inglés | MEDLINE | ID: mdl-39146465

RESUMEN

BACKGROUND: In the US, routine vision care and medical services are often covered by separate insurance plans. Unmet needs for vision care are more common among adults with gaps in medical coverage, but it is unclear how gaps in medical coverage correlate with lack of vision benefits among currently insured adults. We hypothesized that gaps in medical coverage in the past 12 months would be associated with lack of coverage for vision care among US adults currently covered by commercial medical insurance. METHODS: We included adults age 18-65 with private insurance who participated in the 2019-2022 National Health Interview Survey. The primary outcome was any coverage for vision care services, and the secondary outcome was a source of vision coverage (primary health insurance policy as compared to single-service plans only). RESULTS: Based on a sample of 50,000 participants, we estimated 4% of commercially insured adults recently experienced coverage gaps, and 75% had coverage for vision care services. On multivariable analysis, commercially insured adults with recent gaps in medical coverage were more likely to lack coverage for vision care at the time of the survey, compared to adults with continuous medical coverage (odds ratio [OR], 0.77; 95% CI: 0.68, 0.86). However, medical coverage gaps were not associated with source of vision care coverage. CONCLUSIONS: Gaps in medical insurance coverage were associated with lower likelihood of vision care coverage compared to continuous medical coverage. Protecting continuity of health insurance may support access to vision benefits and reduce gaps in routine vision care.

9.
Clin Rehabil ; : 2692155241270968, 2024 Aug 13.
Artículo en Inglés | MEDLINE | ID: mdl-39135465

RESUMEN

OBJECTIVE: Owing to the lack of a suitable tool for detecting the unmet needs of young stroke survivors, this study aims to develop a validated questionnaire for evaluating these unmet needs. DESIGN: A cross-sectional, observational research design. SETTING: Chang Gung Memorial Hospital Linkou and Taoyuan branches in Taiwan. PARTICIPANTS: A total of 211 participants (average age 53 years; within 6 months post-stroke) completed the questionnaire. MAIN MEASURES: A qualitative approach was used to create an item pool. Experts verified item suitability, and content validity was evaluated using the item content validity index. Item analysis was applied to determine item quality, and factor analysis was used to explore construct validity. In addition, parallel analysis was employed to ascertain the optimal number of factors. RESULTS: The scale development procedure resulted in a 27-item questionnaire that assesses the unmet needs of young stroke survivors after a stroke. The item content validity index was 1.0. The Unmet Needs Questionnaire has five factors: restoring prestroke abilities and life, rehabilitation-related resources, social support and self-adjustment, economic and post-stroke life adjustment, and stroke-related information. These five factors accounted for 54% of the variance. Cronbach's alpha for the total scale was 0.91, while the alpha for the subscales ranged from 0.74 to 0.88. CONCLUSIONS: The Unmet Needs Questionnaire showed acceptable reliability and validity. It can help clinical professionals and government agencies identify stroke survivors' unmet needs and develop tailored care plans. Future research should explore the trajectory of post-stroke unmet needs using this tool.

10.
Disabil Health J ; : 101678, 2024 Jul 30.
Artículo en Inglés | MEDLINE | ID: mdl-39117520

RESUMEN

BACKGROUND: The availability of population-level data on unmet needs for long-term services and supports (LTSS) is limited at state and national levels. Data on unmet LTSS needs can improve our understanding of disparities and relationships with health outcomes. OBJECTIVE: 1) Explore differences in unmet LTSS needs by socio-demographic characteristics, including age, sex, race/ethnicity, metropolitan status, sexual orientation, and socio-economic status; and 2) Examine associations between unmet LTSS needs and health/preventative healthcare outcomes. METHODS: We used the 2021 Behavioral Risk Factor Surveillance System (BRFSS) core survey and state-added LTSS questions to analyze a sample of adults with LTSS needs in Texas (N = 1232). We compared socio-demographic characteristics between adults with and without unmet LTSS needs. We conducted modified-Poisson regressions to estimate unadjusted and adjusted risk ratios (with 95 % confidence intervals) for each health/preventative healthcare outcome among adults with unmet LTSS needs. Health outcomes included health status, healthy days-physical health, healthy days-mental health, suicide ideation, and multiple chronic conditions. Preventative healthcare outcomes included routine check-up and flu vaccine. RESULTS: Among adults with LTSS needs, those with unmet LTSS needs were statistically significantly more likely to be younger (age<65), female, higher educational attainment, and non-straight sexual orientation. After controlling for socio-demographic variables, having unmet needs for LTSS was significantly associated with poorer physical and mental health outcomes and suicide ideation. CONCLUSIONS: Improved data collection on unmet needs LTSS can assist policymakers, particularly at the state level in guiding reforms to reduce disparities in access to home and community-based services (HCBS) and improve health outcomes.

11.
J Eval Clin Pract ; 2024 Aug 25.
Artículo en Inglés | MEDLINE | ID: mdl-39183512

RESUMEN

RATIONALE: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population. AIMS AND OBJECTIVES: The availability of patients' advanced directives varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia. METHOD: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC. RESULTS AND CONCLUSION: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care.

12.
Respir Investig ; 62(5): 785-793, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38996779

RESUMEN

Idiopathic pulmonary fibrosis (IPF) is the archetypal interstitial lung disease. It is a chronic progressive condition that is challenging to manage as the clinical course of the disease is often difficult to predict. The prevalence of IPF is rising globally and in Japan, where it is estimated to affect 27 individuals per 100,000 of the population. Greater patient numbers and the poor prognosis associated with IPF diagnosis mean that there is a growing need for disease management approaches that can slow or even reverse disease progression and improve survival. Considerable progress has been made in recent years, with the approval of two antifibrotic therapies for IPF (pirfenidone and nintedanib), the availability of Japanese treatment guidelines, and the creation of global and Japanese disease registries. Despite this, significant unmet needs remain with respect to the diagnosis, treatment, and management of this complex disease. Each of these challenges will be discussed in this review, including making a timely and differential diagnosis of IPF, uptake and adherence to antifibrotic therapy, patient access to pulmonary rehabilitation, lung transplantation and palliative care, and optimal strategies for monitoring and staging disease progression, with a particular focus on the status in Japan. In addition, the review will reflect upon how ongoing research, clinical trials of novel therapies, and technologic advancements (including artificial intelligence, biomarkers, and genomic classification) may help address these challenges in the future.


Asunto(s)
Progresión de la Enfermedad , Fibrosis Pulmonar Idiopática , Indoles , Trasplante de Pulmón , Piridonas , Fibrosis Pulmonar Idiopática/diagnóstico , Fibrosis Pulmonar Idiopática/terapia , Humanos , Japón/epidemiología , Indoles/uso terapéutico , Piridonas/uso terapéutico , Cuidados Paliativos , Diagnóstico Diferencial , Guías de Práctica Clínica como Asunto , Antifibróticos/uso terapéutico , Prevalencia , Biomarcadores , Sistema de Registros
13.
J Women Aging ; : 1-16, 2024 Jul 08.
Artículo en Inglés | MEDLINE | ID: mdl-38976516

RESUMEN

Aging Veterans face complex needs across multiple domains. However, the needs of older female Veterans and the degree to which unmet needs differ by sex are unknown. We analyzed responses to the HERO CARE survey from 7,955 Veterans aged 55 years and older (weighted N = 490,148), 93.9% males and 6.1% females. We evaluated needs and unmet needs across the following domains: activities of daily living (ADLs), instrumental ADLs (IADLs), health management, and social. We calculated weighted estimates and compared sex differences using age-adjusted prevalence ratios. On average, female Veterans were younger, more were Non-Hispanic Black and unmarried. Females and males reported a similar prevalence of problems across all domains. However, compared to males, female Veterans had a lesser prevalence of missed appointments due to transportation (aPR 0.49; 95% CI: 0.26-0.92), housework unmet needs (aPR: 0.44; 95% CI: 0.20-0.97), and medication management unmet needs (aPR: 0.33; 95% CI: 0.11-0.95) but a higher prevalence of healthcare communication unmet needs (aPR: 2.40; 95% CI: 1.13-5.05) and monitoring health conditions unmet needs (aPR: 2.13, 95% CI: 1.08-4.20). Female Veterans' common experience of unmet needs in communicating with their healthcare teams could result in care that is less aligned with their preferences or needs. As the number of older female Veterans grows, these data and additional work to understand sex-specific unmet needs and ways to address them are essential to providing high-quality care for female Veterans.

14.
Epilepsia Open ; 2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-38965814

RESUMEN

OBJECTIVE: Epilepsy requires continuous medical attention from multiple healthcare specialists, specialized facilities, and community-based care. In Spain, there is no standardized approach to epilepsy care. The aim of this study was to identify the factors impacting on the delivery of high-quality care by exploring key steps and barriers along the patient journey through the Spanish National Healthcare System (NHS). METHODS: A qualitative study was conducted using opinions and experiences of neurologists, nurses, patients, and caregivers shared in discussion meetings. Using thematic content analyses, relevant aim-focused statements were coded according to prespecified issues in a discussion map (i.e., key steps and barriers), and sub-coded according to emerging issues. Thematic saturation and co-occurrence of key steps/barriers were evaluated to identify the most relevant factors impacting on the delivery of high-quality care. RESULTS: Sixty-five stakeholders took part in discussion meetings (36 neurologists, 10 nurses, 10 patients, and nine caregivers). Six key steps on the patient journey were identified: emergency care, diagnosis, drug therapy, follow-up, referral, and interventional treatment. Of these, follow-up was the most relevant step impacting on the delivery of high-quality patient care, followed by drug therapy and diagnosis. Emergency care was considered a hot-spot step with impact throughout the patient journey. Communication (among HCPs and between HCPs and patients) was a barrier to the delivery of high-quality care at several stages of the patient journey, including drug therapy, follow-up, referral, and interventional treatment. Resource availability was a barrier for diagnosis (especially for confirmation), drug therapy (drug availability), and referral (lack of professionals and specialized centers, and long waiting lists). SIGNIFICANCE: This is the first study capturing perspectives of four key stakeholders involved in epilepsy care in Spain. We provide an overview of the patient journey through the Spanish NHS and highlight opportunities to improve the delivery of patient-centered care with a chronicity perspective. PLAIN LANGUAGE SUMMARY: Patients with epilepsy may require prolonged medical care. In Spain, care is provided by a range of specialist and non-specialist centers. In this study, a team of Spanish neurologists, nurses, patients and caregivers identified barriers that affect the delivery of high-quality care for patients with epilepsy at each stage of their journey through the Spanish NHS. Specific epilepsy training for healthcare providers, appropriate resources for diagnosing and treating patients, and good communication between healthcare workers and patients were identified as important factors in providing high-quality care for patients with epilepsy.

15.
Gynecol Endocrinol ; 40(1): 2362244, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38946226

RESUMEN

Ovulatory disorders are a common cause of abnormal uterine bleeding in women of reproductive age. The International Federation of Gynecology and Obstetrics currently offers a causal classification system for ovulatory disorders but does not provide clear management recommendations. There remains regional disparity in treatment practices, often influenced by institutional and insurance regulations as well as cultural and religious practices. A panel of experts evaluated current gaps in ovulatory disorder management guidelines and discussed potential strategies for addressing these unmet needs. Key gaps included a lack in consensus about the effectiveness of combined estrogen and progestogen versus progestogen alone, a paucity of evidence regarding the relative effectiveness of distinct hormonal molecules, a lack of data regarding optimal treatment duration, and limited guidance on optimal sequencing of treatment. Recommendations included development of a sequential treatment-line approach and development of a clinical guide addressing treatment scenarios common to all countries, which can then be adapted to local practices. It was also agreed that current guidelines do not address the unique clinical challenges of certain patient groups. The panel discussed how the complexity and variety of patient groups made the development of one single disease management algorithm unlikely; however, a simplified, decision-point hierarchy could potentially help direct therapeutic choices. Overall, the panel highlighted that greater advocacy for a tailored approach to the treatment of ovulatory disorders, including wider consideration of non-estrogen therapies, could help to improve care for people living with abnormal uterine bleeding due to ovarian dysfunction.


Asunto(s)
Hemorragia Uterina , Humanos , Femenino , Hemorragia Uterina/terapia , Hemorragia Uterina/etiología , Hemorragia Uterina/diagnóstico , Ovulación , Guías de Práctica Clínica como Asunto , Metrorragia/etiología , Metrorragia/terapia
16.
Cureus ; 16(6): e62525, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-39022509

RESUMEN

BACKGROUNDS: Enhancing maternal health quality is a concern among researchers globally. According to the World Health Organization (WHO), one factor in women's health and empowerment is the rate of use of various contraceptive techniques. The WHO defines unmet contraceptive need as the discrepancy between a woman's desire to delay or cease childbearing and lack of contraception use to achieve this goal. Our study was designed to measure the unmet need for family planning and contraceptive use among married Saudi women attending primary healthcare centers in Alahsa, Saudi Arabia. METHODOLOGY: A cross-sectional study was carried out using multistage cluster stratified sampling. The study included all married Saudi women aged 18-49 attending primary health centers. A structured questionnaire from the United States Agency for International Development Demographic and Health Surveys Methodology was used. Data analysis was performed using the statistical software IBM SPSS version 29 (IBM Corp., Armonk, NY). RESULTS: In all, 430 individuals were included. The participants' ages ranged from 19 to 49 years (33.4 ± 7 years). Among them, 50 (11.6%) were pregnant. Among those who were not pregnant, 268 (62.3%) were using a method of contraception. Based on the definitions adopted in this study, 90 (20.9%) had unmet needs for family planning, and 340 (79.1%) had their needs met. The total demand for family planning was estimated to be 83.2%. The percentage of demand for family planning satisfied by a modern contraceptive method was 46.9%. CONCLUSION: Although Alahsa has a lower unmet need rate (20%) than other cities in Saudi Arabia, it remains notably higher than the average rate in Northern African and Western Asian countries, which is 10.9%. A number of factors, including nulliparity and having more than two children, were associated with unmet contraceptive needs. The majority of women who did not use contraceptives had concerns about the side effects and inconvenience of use.

17.
Artículo en Inglés | MEDLINE | ID: mdl-39031954

RESUMEN

BACKGROUND: Colorectal cancer (CRC) has emerged as one of the most common cancers, with increasing survival rates globally. As patients with CRC experience diverse treatment effects corresponding to different survival stages, understanding their unmet needs based on the survival stage is critical to tailor supportive care with limited medical resources. AIM: This study aimed to understand the unmet needs of patients with CRC across survival stages. METHODS: This scoping review followed the 5-stage framework established by Arksey and O'Malley. Five online databases were searched with narrative synthesis performed after data extraction. RESULTS: Fifteen studies were identified for this review, with 12 focusing on the acute survival stage and three reporting on the extended survival stage. Ten studies used validated scales to assess unmet needs, with the Supportive Care Needs Survey being the most common scale. Unmet needs in patients with CRC demonstrate distinct patterns across survival stages. Most studies reported a higher prevalence of unmet needs during the extended survival stage compared to the acute survival stage. Unmet emotional needs predominate during the acute survival stage, whereas unmet physical needs become most prominent in the extended survival stage. LINKING EVIDENCE TO ACTION: Healthcare providers are encouraged to conduct assessments tailored to the specific survival stage, with particular emphasis on addressing unmet needs during the extended survival stage. The development of standardized scales is recommended to comprehensively assess the unmet needs of patients with CRC.

18.
JMIR Public Health Surveill ; 10: e56881, 2024 Jul 11.
Artículo en Inglés | MEDLINE | ID: mdl-39037327

RESUMEN

Background: Unmet need for health care is defined as choosing to postpone or completely avoid necessary medical treatment despite having a need for it, which can worsen current conditions or contribute to new health problems. The emerging infodemic can be a barrier that prevents people from accessing quality health information, contributing to lower levels of seeking medical care when needed. Objective: We evaluated the association between perceptions of health mis- and disinformation on social media and unmet need for health care. In addition, we evaluated mechanisms for this relationship, including frequency of social media use, medical trust, and medical care discrimination. Methods: Data from 3964 active adult social media users responding to the 2022 Health Information National Trends Survey 6 (HINTS 6), a nationally representative survey, were analyzed. The outcome was unmet need for medical care, defined as delaying or not getting the necessary medical care. The predictor variables were perception of social media health mis- and disinformation, frequency of social media use, level of trust in the health care system, and perceived racial and ethnic discrimination when receiving health care. Results: Multivariable logistic regression models indicated that perception of substantial social media health mis- and disinformation (odds ratio [OR] 1.40, 95% CI 1.07-1.82), daily use of social media (OR 1.34, 95% CI 1.01-1.79), low medical trust (OR 1.46, 95% CI 1.06-2.01), and perceived discrimination (OR 2.24, 95% CI 1.44-3.50) were significantly associated with a higher likelihood of unmet need for medical care. Unmet need among adults who did not use social media daily and who did not perceive substantial mis- and disinformation (24%; 95% CI 19%-30%) was lower compared to daily social media users who perceived substantial mis- and disinformation (38%; 95% CI 32%-43%). Adults who perceived substantial mis- and disinformation and had low trust in health care had the highest probability of reporting unmet need (43%; 95% CI 38%-49%) compared to the other three groups. Adults who perceived substantial mis- and disinformation and experienced medical care discrimination had a statistically significant higher probability of reporting unmet need (51%; 95% CI 40%-62%) compared to adults who did not experience medical care discrimination and did not perceive substantial mis- and disinformation (29%; 95% CI 26%-32%). Conclusions: Unmet need for medical care was higher among individuals who perceived a substantial degree of social media mis- and disinformation, especially among those who used social media daily, did not trust the health care system, and experienced racial or ethnic discrimination when receiving health care. To counter the negative effects of social media mis- and disinformation on unmet need for health care, public health messaging must focus on daily social media users as well as improving trust and reducing structural racism in the health care system.


Asunto(s)
Medios de Comunicación Sociales , Confianza , Humanos , Medios de Comunicación Sociales/estadística & datos numéricos , Estudios Transversales , Masculino , Confianza/psicología , Adulto , Femenino , Persona de Mediana Edad , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Adolescente , Anciano , Estados Unidos
20.
Open Forum Infect Dis ; 11(7): ofae284, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38966849

RESUMEN

Background: Unmet needs for ancillary services are substantial among people with human immunodeficiency virus (PWH), and provider type could influence the prevalence of unmet needs for these services. Methods: Data from a national probability sample of PWH were analyzed from the Centers for Disease Control and Prevention's Medical Monitoring Project. We analyzed 2019 data on people who had ≥1 encounter with a human immunodeficiency virus (HIV) care provider (N = 3413) and their care facilities. We assessed the proportion of needs that were unmet for individual ancillary services, overall and by HIV care provider type, including infectious disease (ID) physicians, non-ID physicians, nurse practitioners, and physician assistants. We calculated prevalence differences (PDs) with predicted marginal means to assess differences between groups. Results: An estimated 98.2% of patients reported ≥1 need for an ancillary service, and of those 46% had ≥1 unmet need. Compared with patients of ID physicians, needs for many ancillary services were higher among patients of other provider types. However, even after adjustment, patients of non-ID physicians had lower unmet needs for dental care (adjusted PD, -5.6 [95% confidence interval {CI}, -9.9 to -1.3]), and patients of nurse practitioners had lower unmet needs for HIV case management services (adjusted PD, -5.4 [95% CI, -9.4 to -1.4]), compared with patients of ID physicians. Conclusions: Although needs were greater among patients of providers other than ID physicians, many of these needs may be met by existing support systems at HIV care facilities. However, additional resources may be needed to address unmet needs for dental care and HIV case management among patients of ID physicians.

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