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1.
Qual Life Res ; 33(1): 195-206, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37587324

RESUMEN

BACKGROUND: The burden of multimorbidity has been observed worldwide and it has significant consequences on health outcomes. In Australia, health-related quality of life (HRQoL) is comparatively low amongst Aboriginal and/or Torres Strait Islanders, yet no studies have examined the effect of multimorbidity on HRQoL within this at-risk population. This study seeks to fill that gap by employing a longitudinal research design. METHODS: Longitudinal data were derived from three waves (9, 13, and 17) of the household, income and labour dynamics in Australia (HILDA) Survey. A total of 1007 person-year observations from 592 Aboriginal and/or Torres Strait Islander individuals aged 15 years and above were included. HRQoL was captured using the 36-item Short-Form Health Survey (SF-36), and multimorbidity was defined using self-reports of having been diagnosed with two or more chronic health conditions. Symmetric fixed-effects linear regression models were used to assess how intraindividual changes in multimorbidity were associated with intraindividual changes in HRQoL. RESULTS: Approximately 21% of Indigenous Australians were classified as experiencing multimorbidity. Respondents had statistically significantly lower HRQoL on the SF-36 sub-scales, summary measures, and health-utility index in those observations in which they experienced multimorbidity. Among others, multimorbidity was associated with lower scores on the SF-36 physical-component scale (ß = - 6.527; Standard Error [SE] = 1.579), mental-component scale (ß = - 3.765; SE = 1.590) and short-form six-dimension utility index (ß = - 0.075; SE = 0.017). CONCLUSION: This study demonstrates that having multiple chronic conditions is statistically significantly associated with lower HRQoL amongst Indigenous Australians. These findings suggest that comprehensive and culturally sensitive health strategies addressing the complex needs of individuals with multimorbidity should be implemented to improve the HRQoL of Indigenous Australians.


Asunto(s)
Pueblos de Australasia , Multimorbilidad , Calidad de Vida , Humanos , Australia/epidemiología , Calidad de Vida/psicología , Aborigenas Australianos e Isleños del Estrecho de Torres , Enfermedad Crónica
2.
Eur J Pediatr ; 2024 Sep 13.
Artículo en Inglés | MEDLINE | ID: mdl-39271554

RESUMEN

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of Palliative Care, 6% of the global need for palliative care is in children. In order to provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. There has always been a confusion in identifying pediatric conditions requiring palliative care. There is a lot of inconsistency in the diagnosis of such conditions particularly in pre-verbal patients. This study attempts to generate more data about the common palliative care conditions and complaints with which the children present to tertiary care hospitals. To study the socio-demographic details, clinical profile, CCC (complex chronic conditions) designation, and the ACT/ RCPCH (Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health) classification of children suffering from chronic conditions requiring palliative care. The study was conducted as a single-center retrospective observational study of pediatric patients enrolled for palliative care at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The total sample size was 400. The socio-demographic data and the clinical profile were recorded from the case records of all the 400 patients. Classification of the conditions was done as per the CCC as well as the ACT/ RCPCH classification system. The mean age in our study was 5.15 years and there was a slighter male (59.5%) preponderance. They presented in OPDs with acute symptoms such as fatigue and fever, and they had other symptoms like tightness of the body, constipation, seizures, and difficulty in swallowing. Majority of the children (55%) were suffering from neurologic and neuromuscular conditions as per CCC followed by hematologic and immunologic conditions (10%). Category 4 (irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health) was reported as the most common category according to the ACT/RCPCH.    Conclusion: Children suffering from chronic disease conditions requiring palliative care usually suffer from multiple symptoms which affect their daily life. As most of the patients belong to category 4 according to ACT/RCPCH which is an irreversible but non-progressive life-limiting condition, the course of the disease is prolonged, therefore requiring comprehensive care and services for a long time. It is necessary to establish more pediatric palliative care units to address the needs of such children. What is known: • Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses. • Data on pediatric palliative care has largely been limited to oncological conditions. There is a paucity of literature documenting the needs among children suffering from non-cancerous chronic conditions. What is new: • This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions. • It also provides clinical and socio-demographic profile of the children suffering from chronic life-limiting conditions requiring palliative care in a tertiary hospital setting in a LMIC (low- or middle-income country).

3.
Health Expect ; 27(2): e14003, 2024 04.
Artículo en Inglés | MEDLINE | ID: mdl-38444291

RESUMEN

INTRODUCTION: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). METHODS: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. RESULTS: Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. CONCLUSION: The PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.


Asunto(s)
Comunicación , Pacientes , Humanos , Adolescente , Enfermedad Crónica , Participación del Paciente , Investigadores
4.
J Oncol Pharm Pract ; : 10781552241279303, 2024 Aug 30.
Artículo en Inglés | MEDLINE | ID: mdl-39212042

RESUMEN

OBJECTIVE: To provide a rationale for a collaborative care model involving oncology and primary care pharmacists to improve the coordination of care of medications for cancer patients with multiple chronic conditions. DATA SOURCES: A review of selected literature and the authors' own research was used. Studies illustrating the gaps in care for medications and pharmacists' roles in oncology and primary care settings from PubMed were reviewed. DATA SUMMARY: There has been a substantial increase in the development and utilization of oral anticancer agents (OAAs). Although OAAs offer convenience and flexibility, they also introduce challenges related to medication adherence, monitoring, and managing side effects. Up to 17.5% of patients experience moderate to severe symptoms from OAAs and about 30% report less than excellent medication adherence. Further, studies showed that 30% to 53% of adult cancer patients have at least one chronic condition that complicates their treatment plan due to the need for medications, increasing the risk of drug interactions, side effects, and non-adherence. The Primary Care Oncology Model (PCOM) incorporates both primary care and oncology pharmacists with comprehensive medication review and patient-reported outcome measure, respectively, to enhance medication appropriateness and effectiveness, and improve overall patient experience. CONCLUSION: Implementing PCOM may improve the medication management of patients taking OAAs for active cancer treatment and chronic medications for their multiple chronic conditions. This collaborative approach can transform patient care by leveraging the expertise of both primary care and oncology pharmacists.

5.
J Med Internet Res ; 26: e46108, 2024 May 23.
Artículo en Inglés | MEDLINE | ID: mdl-38781588

RESUMEN

BACKGROUND: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians. OBJECTIVE: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities. METHODS: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus. RESULTS: We identified 34 papers representing 25 individual studies, including 18 (53%) pilot and feasibility studies, 13 (38%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record. CONCLUSIONS: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination.


Asunto(s)
Cuidadores , Aplicaciones Móviles , Telemedicina , Cuidadores/psicología , Humanos , Planificación de Atención al Paciente
6.
J Adolesc ; 2024 Sep 26.
Artículo en Inglés | MEDLINE | ID: mdl-39327821

RESUMEN

INTRODUCTION: Type 1 Diabetes Mellitus (T1DM) is a chronic condition increasing among young people. Identity development occurs during an individual's life and can be significantly influenced by a chronic disease such as T1DM. We have critically reviewed the relevant scientific literature to understand young people's identity development with T1DM. METHODS: A critical review design was employed to answer the research question: "What does scientific literature state regarding identity development in young people living with Type 1 Diabetes Mellitus?" Numerous databases were searched to include the most relevant scientific literature to answer the research questions. Boolean operator phrases were ultimately used to search for the literature. The initial screening produced 1319 scientific literature, among which seven articles were analyzed thematically. RESULTS: Analysis revealed several significant themes: The identity of young people with T1DM develops differently from those without this chronic condition; young people can either incorporate or contain their T1DM in their identity development, highlighting the complex nature of this process; and numerous external factors significantly influence identity development in young people living with a chronic condition such as T1DM. CONCLUSION: The study underscores that identity develops differently in young people living with T1DM than in those without chronic conditions. However, the existing studies and literature exploring the experiences of young people living with T1DM have relied on information from caregivers and health professionals. This reliance on secondary sources underscores the urgent need for more research to obtain data from young people living with T1DM as a primary source. Such a shift in research practices is crucial to gaining a more comprehensive and accurate understanding of their experiences.

7.
Child Care Health Dev ; 50(1): e13228, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-38265131

RESUMEN

BACKGROUND: It is known that chronic condition also affects siblings without chronic illness. Healthy siblings of children with a chronic condition and aged 9-14 years and healthy children with a sibling without chronic illness and their parents were included in the study. AIM: The aim of our study was to examine the internet-game addiction, physical activity, quality of life and sleep in children with a sibling with chronic condition and compare them with their peers with a healthy sibling. METHODS: Computer game addiction, physical activity, sleep quality and quality of life were evaluated respectively by Computer Game Addiction Scale for Children, Child Physical Activity Questionnaire, Children's Sleep Disorder Scale and Children's Quality of Life Scale. RESULTS: While the mean age of 75 children with chronically ill siblings was 10.65 ± 1.59 years, the mean age of 75 healthy children with healthy siblings was 10.46 ± 2.09 years. It was observed that children with a sibling with a chronic condition were more tend to computer-game addiction, had lower sleep quality, lower quality of life in terms of school functionality and psychosocial health compared to children with a healthy sibling (p < 0.05). CONCLUSIONS: It was revealed that in families with children with a chronic condition, siblings with no health problems should also be evaluated in psychosocial terms and supported by appropriate approaches, such as to increase the level of physical activity.


Asunto(s)
Calidad de Vida , Juegos de Video , Niño , Humanos , Anciano , Hermanos , Sueño , Enfermedad Crónica , Ejercicio Físico , Computadores
8.
J Pediatr Nurs ; 78: e31-e40, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38964964

RESUMEN

PROBLEM: Adolescents and young adults with chronic or rare conditions face unique risks to their physical, social and emotional development. Research suggests that peer support improves their quality of life and reduces social isolation. However, there is a paucity of current information considering multiple intervention formats. ELIGIBILITY CRITERIA: A targeted literature review was conducted to identify peer support interventions and assess their feasibility, acceptability and efficacy for this population. Searches were conducted in MEDLINE, Embase and American Psychological Association PsycINFO for records reporting peer support interventions in young adults with chronic or rare conditions. Data were extracted from relevant publications and qualitatively evaluated. SAMPLE: Thirty studies were included, which assessed the use of peer support for young adults (aged 13-30 years) with chronic or rare conditions in Europe or North America. RESULTS: Peer support interventions had positive effects on social positivity, psychosocial development and medical outcomes, though significance was not always demonstrated. CONCLUSIONS: Peer support can enhance care for young adults with chronic or rare conditions. Current literature suggests that once-weekly virtual interventions are the most feasible and acceptable for patients, leading to multifaceted improvements in their well-being. IMPLICATIONS: This study is one of the first to discuss in-person, virtual and hybrid peer-based interventions for young adults with chronic and rare conditions. While all formats improved social, psychological and medical outcomes, virtual formats may be most accessible to participants. Interventions should be made available to this population, and guidelines for optimal implementation of peer support are needed.


Asunto(s)
Grupo Paritario , Calidad de Vida , Apoyo Social , Humanos , Adolescente , Adulto Joven , América del Norte , Enfermedad Crónica , Europa (Continente) , Masculino , Femenino , Adulto , Enfermedades Raras/psicología
9.
J Pediatr Nurs ; 77: e385-e393, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38777676

RESUMEN

PROBLEM: Pediatric specialty services are often geographically concentrated in urban areas, leaving up to 1 in 5 rural-dwelling children in the United States without access to advanced care. The purpose of this review was to identify and review extant literature related to barriers and facilitators to accessing specialty care for rural-dwelling children with complex chronic conditions. ELIGIBILITY CRITERIA: The Whittemore and Knafl (2005) integrative review method guided the review which included a critical appraisal and analysis of relevant articles published between 2012 and 2023. SAMPLE: Twenty-three studies were identified for inclusion in the integrative review. RESULTS: Using the domains of the Levesque et al. (2013) conceptual framework, findings were categorized according to the access to care continuum. Barriers included broadband access, transportation, and inadequate care coordination. Facilitators included telehealth, social support, and outreach clinics. CONCLUSIONS: To improve access to pediatric specialty care for rural-dwelling children, nurses, physicians, and policymakers will need to consider how the social determinants of health impact the healthcare access continuum from diagnosis to continuing healthcare. IMPLICATIONS: The findings of this integrative review will aid researchers in developing interventions to improve access to pediatric specialty care for rural-dwelling children.


Asunto(s)
Accesibilidad a los Servicios de Salud , Población Rural , Humanos , Niño , Enfermedad Crónica/terapia , Estados Unidos , Femenino , Masculino , Servicios de Salud del Niño/organización & administración , Servicios de Salud Rural/organización & administración
10.
J Pediatr Nurs ; 76: 1-15, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38309191

RESUMEN

PURPOSE: Chronic health conditions impact nearly 40% of children in the United States, necessitating parents/caregivers to entrust healthcare responsibilities to youth aging into adulthood. Understanding the parental entrustment process may lead to tailored transition support; however, the concept lacks conceptual clarity, limiting its research and practical applications. DESIGN AND METHODS: Rodgers' evolutionary concept analysis method was used to clarify the parental entrustment of healthcare responsibilities to youth with chronic health conditions. PubMed, CINAHL, and PsycINFO databases were searched without date restrictions, including full-text, English-language, primary source articles related to parent-child healthcare transition preparation. Following title, abstract, and full-text screenings, data were analyzed using a hybrid thematic approach to identify antecedents, attributes, and consequences. RESULTS: Forty-three studies from August 1996 to September 2023 were identified. Antecedents encompass social cues and readiness factors, while attributes involve a) responsibility transfer, support, and facilitation, b) a dynamic process, c) balancing trust and fear, d) navigating conflict, and e) parental letting go. Consequences entail shifts in parental and adolescent roles. Parental entrustment is an iterative process wherein parents guide their maturing child through responsibility transfer via facilitation, support, conflict navigation, and trust building. CONCLUSION: The clarified concept underscores the role of parents/caregivers in empowering youth to manage their health. Introducing a working definition and conceptual model contributes to understanding the processes families navigate in the larger landscape of healthcare transition. PRACTICE IMPLICATIONS: This clarification holds implications for clinicians and policymakers, offering insights to enhance support and guidance for families navigating healthcare transition.


Asunto(s)
Relaciones Padres-Hijo , Padres , Humanos , Enfermedad Crónica , Adolescente , Padres/psicología , Masculino , Femenino , Transición a la Atención de Adultos , Niño , Confianza , Estados Unidos
11.
J Pediatr Nurs ; 75: e34-e41, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38216349

RESUMEN

PURPOSE: This study aimed to describe the perception of parents of children/adolescents with chronic conditions of their quality of life and family functioning during the COVID-19 pandemic and explore how the COVID-19 pandemic affected family management of children/adolescents' chronic conditions. DESIGN AND METHODS: A total of 237 parents of children/adolescents with chronic conditions participated in this cross-sectional study. Data were collected through an online questionnaire using the Paediatric Quality of Life Inventory™ Family Impact Module and an open-ended question about the impact of the pandemic on the family management of the paediatric chronic condition. RESULTS: The Total Score of PedsQL™ FIM was slightly higher than the midpoint of the scale (M = 60.27; SD = 19.04), and the impact of the pandemic on the family's management of the chronic condition was perceived by 30% of parents as high or moderate. Statistically significant differences were found between parents who reported a high or moderate impact of the pandemic and those reporting little or no impact of the pandemic regarding parental quality of life and family functioning (t (233) = 8.13, p = .00, Cohen's d = 1.14). Two themes emerged from the analysis of the open-ended question: Impact on the child/adolescent and Impact on the family. CONCLUSIONS: Parents of children/adolescents with chronic conditions reported an average quality of life, and the COVID-19 pandemic significantly impacted the family management of chronic conditions. PRACTICE IMPLICATIONS: These results highlight the importance of developing interventions to support families in complex situations and contexts, targeting family functioning, family quality of life, and emotional management.


Asunto(s)
COVID-19 , Calidad de Vida , Adolescente , Niño , Humanos , Calidad de Vida/psicología , Pandemias , Estudios Transversales , Reproducibilidad de los Resultados , COVID-19/epidemiología , Padres/psicología , Enfermedad Crónica
12.
Nurs Crit Care ; 29(5): 880-886, 2024 09.
Artículo en Inglés | MEDLINE | ID: mdl-38168048

RESUMEN

BACKGROUND: Patients with long term and additional needs (LEAP) in paediatric intensive care units (PICUs) are a growing and heterogenous cohort that provide unique challenges to clinicians. Currently no standard approach to define and manage this cohort exists. AIM: To analyse bed occupancy, examine current practice, and explore ideas to improve PICU care of patients with long term and additional needs. STUDY DESIGN: Patients with LEAP were defined as meeting two or more of the following criteria: length of stay >14 days; life limiting condition; ≥2 failed extubations; hospital stay >1 month prior to PICU admission; likely to require long-term ventilation. An electronic survey was then sent to all UK PICUs, via the UK Paediatric Critical Care Society, to collect quantitative and qualitative data relating to bed occupancy, length of stay, multidisciplinary and family involvement, and areas of possible improvement. Data collection were occurred between 8 February 2022 and 14 March 2022. Quantitative data were analysed using Microsoft Excel 365 and SPSS Statistics version 28.0. Raw data and descriptive statistics were reported, including percentages and median with interquartile range for non-parametric data. Qualitative raw data were examined using thematic analysis. Analysis was undertaken independently by two authors and results assessed for concordance. RESULTS: 70.1% (17/24) PICUs responded. 25% (67/259) of PICU beds were occupied by patients with long term and additional needs. 29% (5/17) of responding units have tailored management plans to this cohort of patient. A further 11% (2/17) have guidelines for children with generic chronic illness. 12% (2/16) of responding units had a designated area and 81% (13/16) of responding units had designated professionals. The majority (68% and 62%) of responding units engaged families and community professionals in multidisciplinary meetings. When asked how the care of long term and additional needs patients might be improved five themes were identified: consistent, streamlined care pathways; designated transitional care units; designated funding and hospital-to-home commissioning; development of roles to facilitate collaboration between hospital and community teams; proactive discharge planning and parallel planning. CONCLUSIONS: This survey provides a snapshot of UK practice for a cohort of patients that occupies a considerable proportion (29%) of PICU beds. While only a minority of responding PICUs offer specifically tailored management plans, the majority of units have designated professionals. RELEVANCE TO CLINICAL PRACTICE: Opportunities exist to improve PICU care in LEAP patients in areas such as: streamlined care pathways, designated clinical areas, designated funding, and development of defined collaborative roles. Next steps may involve working group convention to develop a consensus definition and share good practice examples.


Asunto(s)
Unidades de Cuidado Intensivo Pediátrico , Tiempo de Internación , Humanos , Unidades de Cuidado Intensivo Pediátrico/estadística & datos numéricos , Unidades de Cuidado Intensivo Pediátrico/organización & administración , Reino Unido , Tiempo de Internación/estadística & datos numéricos , Encuestas y Cuestionarios , Niño , Ocupación de Camas/estadística & datos numéricos , Femenino , Masculino
13.
Rheumatology (Oxford) ; 62(SI3): SI242-SI251, 2023 10 23.
Artículo en Inglés | MEDLINE | ID: mdl-37871922

RESUMEN

Multimorbidity, the presence of multiple chronic conditions, is highly prevalent in people with RA. An essential characteristic of multimorbidity is the interrelatedness of the different conditions that may develop in a multimorbid person. Recent studies have begun to identify and describe the Multimorbidity Web by elucidating unique multimorbidity patterns in people with RA. The primary multimorbidity patterns in this web are cardiopulmonary, cardiometabolic, and mental health and chronic pain multimorbidity. Once caught in the Multimorbidity Web, the consequences can be devastating, with reduced quality of life, physical function, survival, and treatment responses observed in multimorbid RA persons. The development of effective management and preventive approaches for multimorbidity in people with RA is in its infancy. Determining how best to assess, intervene, and prevent multimorbidity in RA is crucial to optimize long-term outcomes in people with RA.


Asunto(s)
Artritis Reumatoide , Multimorbilidad , Humanos , Comorbilidad , Enfermedad Crónica , Calidad de Vida , Artritis Reumatoide/epidemiología
14.
J Gen Intern Med ; 38(7): 1593-1598, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36600078

RESUMEN

BACKGROUND: High-deductible health plans (HDHPs) are becoming increasingly common, but their financial implications for enrollees with and without chronic conditions and the mitigating effects of health savings accounts (HSAs) are relatively unknown. OBJECTIVE: Our aim was to compare financial hardship between non-HDHPs and HDHPs with and without HSAs, stratified by enrollees' number of chronic conditions. DESIGN: We used data from 2015 to 2018 Medical Expenditure Panels Surveys (MEPS) to compare rates of financial hardship across individuals with HDHPs and non-HDHPs using linear and logistic regression models. PARTICIPANTS: A nationally representative sample of 30,981 adults aged 18-64 enrolled in HDHPs and non-HDHPs. MAIN MEASURES: We examined several measures of financial hardship, including total yearly out-of-pocket medical spending as well as rates of delaying medical care or prescriptions in the past year due to cost, forgoing medical care or prescriptions in the past year due to cost, paying medical bills over time, or having problems paying medical bills. We compared rates using the non-HDHP as the control. KEY RESULTS: On most measures, HDHPs are associated with greater financial hardship compared to non-HDHPs, including average annual out-of-pocket spending of $637 for non-HDHPs, $939 for HDHPs with HSAs, and $825 for HDHPs without HSAs (p < 0.01). However, for HDHP enrollees with multiple chronic conditions, having an HSA was associated with less financial hardship (p < 0.05). CONCLUSIONS: Our findings suggest that HSAs may be most beneficial for those with chronic conditions, in part due to the tax benefits they offer as well as the fact that those with chronic conditions are more likely to take advantage of their HSAs than their younger, healthier counterparts. However, as HDHPs are more likely to be correlated with worse financial outcomes regardless of health status, recent trends of increasing participation may be a reason for concern.


Asunto(s)
Deducibles y Coseguros , Ahorros Médicos , Adulto , Humanos , Estados Unidos/epidemiología , Estrés Financiero , Gastos en Salud , Enfermedad Crónica
15.
J Asthma ; 60(7): 1409-1417, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-36413706

RESUMEN

OBJECTIVE: We characterized bullying among rural adolescents and examined the association between asthma and bullying victimization. METHODS: Participants (N = 1905; 44.5% Black) were students attending rural high schools who were screened for a randomized trial to address uncontrolled asthma. Screening questions asked students about asthma diagnosis and symptoms, bullying victimization, and demographic characteristics. Logistic regression analyses with school as a fixed effect were employed to examine the extent to which demographic factors, asthma diagnosis, asthma status (i.e. current asthma, no asthma, possible undiagnosed asthma), and among those with current asthma, asthma severity, were associated with bullying victimization. Sensitivity analyses using bullying frequency as the outcome were also conducted. RESULTS: 26.0% reported being bullied. Younger age and self-identifying as White were associated with increased risk of bullying victimization. Compared to those with no asthma, those with current asthma or possible undiagnosed asthma were at increased risk for bullying victimization (adjusted odds ratio [AOR] = 2.46; 95% confidence interval (CI) = 1.76-3.46 and AOR = 2.42; 95% CI = 1.87-3.14, respectively). Among those with current asthma, persistent symptoms increased the risk for bullying victimization (AOR = 2.59; 95% CI = 1.45-4.71). Similar results were obtained with sensitivity analyses. CONCLUSIONS: In a large rural community cohort, asthma was associated with bullying victimization. Findings suggest that rural students with asthma, with or without diagnosis, could benefit from schools creating inclusive environments that reduce victimization based on this medical condition. School administrators should foster environments that are accepting of all students' abilities and statuses, and healthcare providers can provide proper asthma management education to these adolescents.


Asunto(s)
Asma , Acoso Escolar , Víctimas de Crimen , Adolescente , Humanos , Asma/epidemiología , Escolaridad , Población Rural , Instituciones Académicas , Estudios de Cohortes
16.
Age Ageing ; 52(1)2023 01 08.
Artículo en Inglés | MEDLINE | ID: mdl-36729471

RESUMEN

BACKGROUND: walking is crucial for an active and healthy ageing, but the perspectives of individuals living with walking impairment are still poorly understood. OBJECTIVES: to identify and synthesise evidence describing walking as experienced by adults living with mobility-impairing health conditions and to propose an empirical conceptual framework of walking experience. METHODS: we performed a systematic review and meta-ethnography of qualitative evidence, searching seven electronic databases for records that explored personal experiences of walking in individuals living with conditions of diverse aetiology. Conditions included Parkinson's disease, multiple sclerosis, chronic obstructive pulmonary disease, hip fracture, heart failure, frailty and sarcopenia. Data were extracted, critically appraised using the NICE quality checklist and synthesised using standardised best practices. RESULTS: from 2,552 unique records, 117 were eligible. Walking experience was similar across conditions and described by seven themes: (i) becoming aware of the personal walking experience, (ii) the walking experience as a link between individuals' activities and sense of self, (iii) the physical walking experience, (iv) the mental and emotional walking experience, (v) the social walking experience, (vi) the context of the walking experience and (vii) behavioural and attitudinal adaptations resulting from the walking experience. We propose a novel conceptual framework that visually represents the walking experience, informed by the interplay between these themes. CONCLUSION: a multi-faceted and dynamic experience of walking was common across health conditions. Our conceptual framework of the walking experience provides a novel theoretical structure for patient-centred clinical practice, research and public health.


Asunto(s)
Antropología Cultural , Caminata , Humanos , Investigación Cualitativa , Antropología Cultural/métodos
17.
Eur J Pediatr ; 182(3): 1163-1171, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36602622

RESUMEN

The purpose of this study is to clarify the relationship between having a chronic condition (CC) and several types of risky sexual behaviour (RSB) among adolescents and young adults. We used data from a multicentre cross-sectional study carried out on 14,431 adolescents from 137 French schools. Logistic regression was used to assess the association between several types of RSB and CCs among the 2680 participants aged 17 years or over who reported sexual intercourse. Survival analysis was conducted to assess the association between CCs and age at first sexual intercourse across the whole sample. Analyses were conducted separately by gender with and without adjustment for the parents' education level, early menarche and subjective wellbeing (relationship with mother and father, depression, perceived health status and liking school). Among boys, having a CC was associated with a higher risk of RSB in both univariate (OR: 1.58 [95% CI: 1.10-2.27]) and multivariate analyses (aOR: 1.62 [95% CI: 1.11-2.38]). Among girls, the association between chronic condition and RSB in univariate analysis was non-significant (OR: 1.30 [95% CI: 0.97-1.76]) and disappeared after adjustment on subjective wellbeing (aOR: 1.08 [95% CI: 0.78-1.49]). There was no association between CC and age at first sexual intercourse.    Conclusion: There were major gender differences. Boys with a CC were more prone to engage in RSB independent of their subjective wellbeing, whereas in girls, subjective wellbeing seemed to mediate the relationship between CC and RSB. Clinicians should be aware of those gender differences in order to deliver preventive strategies regarding sexuality that target both genders. What is Known: • Young people with chronic conditions have a higher likelihood of engaging in risky sexual behaviour. • Engaging in such behaviours can be much more costly, as it can weaken their underlying state of health. What is New: • We found major gender differences. Boys were more prone to engage in risky behaviour independent of their subjective wellbeing, whereas in girls, it seemed to play an important role. • By understanding how risky sexual behaviour differs according to gender, clinicians can deliver prevention messages that target both genders.


Asunto(s)
Asunción de Riesgos , Conducta Sexual , Humanos , Masculino , Femenino , Adolescente , Adulto Joven , Estudios Transversales , Modelos Logísticos , Enfermedad Crónica
18.
BMC Ophthalmol ; 23(1): 251, 2023 Jun 05.
Artículo en Inglés | MEDLINE | ID: mdl-37277715

RESUMEN

BACKGROUND: Older adults experience a natural decline in health, physical and cognitive functionality, and vision impairment (VI) is one among them and has become an increasing health concern worldwide. The present study assessed the association of chronic morbidities such as diabetes, hypertension, stroke, heart diseases and various socioeconomic factors with VI among older Indian adults. METHODS: Data for this study were derived from the nationally-representative Longitudinal Ageing Study in India (LASI), wave-1 (2017-18). VI was assessed using the cut-off of visual acuity worse than 20/80, and additional analysis was carried out using the definition of VI with a cut-off of visual acuity worse than 20/63. Descriptive statistics along with cross-tabulation were presented in the study. Proportion test was used to evaluate the significance level for sex differentials in VI among older adults. Additionally, multivariable logistic regression analysis was conducted to explore the factors associated with VI among older adults. RESULTS: About 33.8% of males and 40% of females suffered from VI in India (visual acuity worse than 20/80). Meghalaya (59.5%) had the highest prevalence for VI among older males followed by Arunachal Pradesh (58.4%) and Tripura (45.2%). Additionally, Arunachal Pradesh (77.4%) had the highest prevalence for VI among females followed by Meghalaya (68.8%) and Delhi (56.1%). Among the health factors, stroke [AOR: 1.20; CI: 1.03-1.53] and hypertension [AOR: 1.12; CI: 1.01-1.22] were the significant risk factors for VI among older adults. Additionally, being oldest old [AOR: 1.58; CI: 1.32-1.89] and divorced/separated/deserted/others [AOR: 1.42; CI: 1.08-1.87] were significantly associated with VI. Moreover, older adults with higher educational status [AOR: 0.42; CI: 0.34, 0.52], currently working [AOR: 0.77; CI: 0.67, 0.88], from urban areas [AOR: 0.86; CI: 0.76-0.98] and from western region [AOR: 0.55; CI: 0.48-0.64] had lower odds of VI in this study. CONCLUSION: This study identified higher rates of VI among those who are diagnosed with hypertension or stroke, currently unmarried, socioeconomically poorer, less educated and urban resident older people that can inform strategies to engage high risk groups. The findings also suggest that specific interventions that promote active aging are required for those who are socioeconomically disadvantaged as well as visually impaired.


Asunto(s)
Diabetes Mellitus , Hipertensión , Masculino , Femenino , Anciano de 80 o más Años , Humanos , Anciano , Trastornos de la Visión/epidemiología , Prevalencia , Diabetes Mellitus/epidemiología , Envejecimiento , India/epidemiología
19.
Health Expect ; 26(3): 1276-1286, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36916677

RESUMEN

INTRODUCTION: Scarce health resources and differing views between persons with hand osteoarthritis (OA) and health professionals concerning care preferences contribute to sustaining a gap between actual needs and existing clinical guidelines for hand OA. The aim of this study is to explore the experiences of persons diagnosed with hand OA in their encounters with health services and how those experiences influence negotiations and decision-making in hand OA care. METHODS: Data from 21 qualitative interviews with persons diagnosed with hand OA were collected, transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Three main themes were developed: symptoms are perceived as ordinary ageing in everyday life, consultations are shaped by trust in healthcare and the responsibilities of prioritisation and self-care govern interactions. CONCLUSION: Ideas of ageing, professional knowledge and self-management dominate hand OA health encounters and contribute to shaping illness perceptions, preferences and opportunities to negotiate decisions in consultations. PATIENT OR PUBLIC CONTRIBUTION: Two patient research partners with hand OA are members of the study project group. One of them is also a co-author of this manuscript.


Asunto(s)
Osteoartritis , Humanos , Osteoartritis/terapia , Investigación Cualitativa , Envejecimiento , Actitud del Personal de Salud , Derivación y Consulta
20.
Health Expect ; 26(4): 1746-1756, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37291977

RESUMEN

INTRODUCTION: People with chronic medical conditions often take medications that improve long-term outcomes but which can be harmful during acute illness. Guidelines recommend that healthcare providers offer instructions to temporarily stop these medications when patients are sick (i.e., sick days). We describe the experiences of patients managing sick days and of healthcare providers providing sick day guidance to their patients. METHODS: We undertook a qualitative descriptive study. We purposively sampled patients and healthcare providers from across Canada. Adult patients were eligible if they took at least two medications for diabetes, heart disease, high blood pressure and/or kidney disease. Healthcare providers were eligible if they were practising in a community setting with at least 1 year of experience. Data were collected using virtual focus groups and individual phone interviews conducted in English. Team members analyzed transcripts using conventional content analysis. RESULTS: We interviewed 48 participants (20 patients and 28 healthcare providers). Most patients were between 50 and 64 years of age and identified their health status as 'good'. Most healthcare providers were between 45 and 54 years of age and the majority practised as pharmacists in urban areas. We identified three overarching themes that summarize the experiences of patients and healthcare providers, largely suggesting a broad spectrum in approaches to managing sick days: Individualized Communication, Tailored Sick Day Practices, and Variation in Knowledge of Sick Day Practices and Relevant Resources. CONCLUSION: It is important to understand the perspectives of both patients and healthcare providers with respect to the management of sick days. This understanding can be used to improve care and outcomes for people living with chronic conditions during sick days. PATIENT OR PUBLIC CONTRIBUTION: Two patient partners were involved from proposal development to the dissemination of our findings, including manuscript development. Both patient partners took part in team meetings and contributed to team decision-making. Patient partners also participated in data analysis by reviewing codes and theme development. Furthermore, patients living with various chronic conditions and healthcare providers participated in focus groups and individual interviews.


Asunto(s)
Personal de Salud , Ausencia por Enfermedad , Adulto , Humanos , Investigación Cualitativa , Farmacéuticos , Enfermedad Crónica
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