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1.
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).

2.
J Multidiscip Healthc ; 17: 4189-4197, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39224483

RESUMEN

The increasing incidence of chronic conditions on a global scale requires a comprehensive approach to palliative care, which is recognized as an essential element of the continuum of care for people with life-threatening conditions. It has been argued that the integration of early palliative care for people with chronic conditions is beneficial. Nevertheless, barriers to integrating early palliative care have been extensively not reviewed. This review aimed to explore the barriers and facilitators of integrating early palliative care for people living with chronic conditions, employing a socio-ecological framework to provide a critical understanding of the influencing factors at multiple levels. The method was a mini review. This review emphasizes the complex and diverse factors that either hinder or facilitate progress in four areas: individual (such as gaps in knowledge and emotional reactions), interpersonal (such as support from family caregiver), healthcare professionals and policy (such as barriers in education, guidelines, and collaboration among professionals), and community (such as societal knowledge and attitudes). Each level presents unique challenges and opportunities for enhancing early palliative care integration, from addressing misconceptions and fears at the individual level, to fostering supportive policies and community awareness. In conclusion, the effective management of early palliative care requires a comprehensive strategy that spans various dimensions, including educational initiatives, policy adjustments, and active involvements of the community. Healthcare systems are supposed to enhance the integration of early palliative care into the trajectory of chronic conditions and enhance the quality of life of affected persons and their families by recognizing and addressing the socio-ecological elements involved.

3.
Ophthalmic Epidemiol ; : 1-9, 2024 Aug 08.
Artículo en Inglés | MEDLINE | ID: mdl-39116402

RESUMEN

PURPOSE: The aim of the study was to estimate the prevalence of diagnosed vision problems and to examine the association of single and multiple chronic conditions with vision problems among middle-aged and older adults in India. METHODS: The study utilized data from the Longitudinal Ageing Study in India (LASI) Wave 1, (2017-18). Descriptive statistics along with bivariate and multivariable analyses were conducted to achieve the study objectives. RESULTS: The prevalence of diagnosed vision problems in the sampled population was 48.2%. The older adults (60+ years) (55.3%) had shown a greater prevalence of vision problems than the middle-aged individuals (41%). Among chronic conditions, hypertension, diabetes, chronic lung diseases, chronic heart diseases, bone related diseases, psychiatric disorders, and high cholesterol were significantly associated with vision problems in the case of both middle-aged and older adults. Furthermore, odds of experiencing vision problems according to the presence of multimorbidity were higher in the middle-aged population [adjusted odds ratio (AOR) = 1.986; confidence interval (CI):1.855-2.126] than in the older population [AOR = 1.746; CI:1.644-1.854]. CONCLUSIONS: Middle-aged and older adults with chronic illnesses and multimorbidity were at greater risk of vision problems. Due to the high prevalence of vision problem, interventions aimed at prevention or early detection are warranted.

4.
JMIR Hum Factors ; 11: e51872, 2024 Aug 07.
Artículo en Inglés | MEDLINE | ID: mdl-39110966

RESUMEN

BACKGROUND: Helsinki University Hospital has developed a digital care pathway (DCP) for people with multiple sclerosis (MS) to improve the care quality. DCP was designed for especially newly diagnosed patients to support adaptation to a chronic disease. OBJECTIVE: This study investigated the MS DCP user behavior and its impact on patient education-mediated changes in health care use, patient-perceived impact of MS on psychological and physical functional health, and patient satisfaction. METHODS: We collected data from the service launch in March 2020 until the end of 2022 (observation period). The number of users, user logins, and their timing and messages sent were collected. The association of the DCP on health care use was studied in a case-control setting in which patients were allowed to freely select whether they wanted to use the service (DCP group n=63) or not (control group n=112). The number of physical and remote appointments either to a doctor, nurse, or other services were considered in addition to emergency department visits and inpatient days. The follow-up time was 1 year (study period). Furthermore, a subgroup of 36 patients was recruited to fill out surveys on net promoter score (NPS) at 3, 6, and 12 months, and their physical and psychological functional health (Multiple Sclerosis Impact Scale) at 0, 3, 6, and 12 months. RESULTS: During the observation period, a total of 225 patients had the option to use the service, out of whom 79.1% (178/225) logged into the service. On average, a user of the DCP sent 6.8 messages and logged on 7.4 times, with 72.29% (1182/1635) of logins taking place within 1 year of initiating the service. In case-control cohorts, no statistically significant differences between the groups were found for physical doctors' appointments, remote doctors' contacts, physical nurse appointments, remote nurse contacts, emergency department visits, or inpatient days. However, the MS DCP was associated with a 2.05 (SD 0.48) visit increase in other services, within 1 year from diagnosis. In the prospective DCP-cohort, no clinically significant change was observed in the physical functional health between the 0 and 12-month marks, but psychological functional health was improved between 3 and 6 months. Patient satisfaction improved from the NPS index of 21 (favorable) at the 3-month mark to the NPS index of 63 (excellent) at the 12-month mark. CONCLUSIONS: The MS DCP has been used by a majority of the people with MS as a complementary service to regular operations, and we find high satisfaction with the service. Psychological health was enhanced during the use of MS DCP. Our results indicate that DCPs hold great promise for managing chronic conditions such as MS. Future studies should explore the potential of DCPs in different health care settings and patient subgroups.


Asunto(s)
Esclerosis Múltiple , Humanos , Esclerosis Múltiple/psicología , Esclerosis Múltiple/terapia , Masculino , Femenino , Persona de Mediana Edad , Adulto , Satisfacción del Paciente , Vías Clínicas , Estudios de Casos y Controles , Finlandia , Telemedicina , Encuestas y Cuestionarios
5.
J Adolesc Health ; 2024 Aug 16.
Artículo en Inglés | MEDLINE | ID: mdl-39152971

RESUMEN

PURPOSE: Adolescent and young adult patients occupy a clinically transitional space between pediatric and adult care. Youth with chronic conditions and special healthcare needs may have trouble accessing and receiving appropriate care in this transition, which may lead to patient safety issues and medicolegal risks for physicians. The objectives of this article were to explore patient safety issues and identify medicolegal risks for physicians. METHODS: A national repository was retrospectively searched for medicolegal cases (MLCs) involving complaints from youth. The study included MLCs closed at the Canadian Medical Protective Association between 2013 and 2022 involving youth. The study participants were adolescents and young adults aged ≥ 15 and ≤ 21 years with medical complexity. The frequencies and proportions of patient safety events and medicolegal risks for physicians were calculated by exploring factors that contributed to each incident using established frameworks. RESULTS: A total of 182 eligible MLCs were identified. Of 206 involved physicians, 55 were psychiatrists. The most common reasons for patient complaints were deficient assessment, diagnostic error, and communication breakdown with the patient and/or family. More than half of the cases were related to a harmful incident. Peer experts reviewed the cases and identified factors such as a deficient assessment, a failure to perform a test or intervention, failure to refer the patient, and insufficient provider knowledge/skill as contributing to the patient safety event. DISCUSSION: The impact of our findings is to identify gaps in care delivery to youth that can inform practitioners of ways to mitigate the gaps and improve patient care and health outcomes.

6.
Cureus ; 16(7): e64229, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-39130907

RESUMEN

Background  Most children with respiratory syncytial virus (RSV) infection have a self-limiting course that can be managed with supportive care, and hospitalization is uncommon. The objectives of this study were to evaluate the epidemiology, outcomes, associated comorbidities, and temporal trends in the prevalence of infants one to 24 months of age who required hospitalization for RSV infection in the United States of America from 1997 to 2019. Methods In this retrospective cross-sectional study, we utilized the Kids' Inpatient Database (KID) to investigate the prevalence and outcomes of RSV bronchiolitis within a large cohort of discharged patients from 1997 to 2019. We included children one to 24 months of age admitted with a diagnosis of RSV bronchiolitis. Neonates were excluded from the analysis. A chi-square for linear trend was used to analyze trends in the prevalence of RSV bronchiolitis hospitalization, the presence of complex chronic conditions (CCC), congenital heart disease (CHD), the use of non-invasive and invasive mechanical ventilation (NIV and IMV), and hospital mortality. Results There were a total of 566,786 infants aged one to 24 months hospitalized with RSV infection out of a total of 9,309,597 discharges during the eight-year cohort, with a hospital prevalence of 60.9 per 1000 discharges and a hospital mortality rate of 0.09% (95% confidence interval (CI): 0.08%-0.1%). There was no trend in hospitalization rates of RSV infections per 100,000 U.S. population during the study period, with a decrease in hospital mortality trend. Children with RSV bronchiolitis were more likely to have government insurance and reside in zip codes with the lowest income quartile. There was a significant seasonal and regional variation in RSV-related hospitalizations. The presence of CCC was identified in 2.4% of the RSV group compared to 5.1% of non-RSV discharges (odds ratio (OR): 0.46, 95% CI: 0.45-0.47; p<0.001). The prevalence of RSV among all discharges has significantly increased over the study period, rising from 51.6 cases per 1000 discharges in 1997 to 180.1 cases per 1000 discharges in 2019 (p<0.001). The prevalence of CCC and CHD among RSV patients has also shown an upward trend, with CCC cases increasing from 1,411 in 1997 to 2,795 in 2019 and CHD cases rising from 1,795 to 3,622 during the same period. The use of invasive mechanical ventilation, non-invasive ventilation, and extracorporeal membrane oxygenation has consistently increased over time. Additionally, complications such as the need for cardiopulmonary resuscitation have demonstrated a similar increasing trend, although they have remained overall low. However, population-based hospitalization rates showed no significant trend. Conclusions The hospitalization rates at a population level in the United States for RSV infection in children aged one to 24 months remained steady from 1997 to 2019, while hospital mortality rates showed a declining trend. There is an increased proportion of comorbid conditions and increased resource utilization in children with RSV. These findings are important for monitoring the effectiveness of preventive strategies for severe RSV infections.

7.
Artículo en Inglés | MEDLINE | ID: mdl-39187300

RESUMEN

Background and Purpose: Older adults are living longer and becoming more diverse. The current study examined the relationship between traumatic life events, hope, coherence, and successful aging in Black and White older adults with at least one chronic health condition, and the influence of life events on gerotranscendence. Methods: Fifty older adults from two senior centers participated. Participants completed the Successful Aging Inventory, Life Events Checklist, Herth Hope Index, and Sense of Coherence Scale. Results: Significant correlations were found between successful aging and gerotranscendence (r = .290; p = .048) and hope (r = .585; p = <.001). Simple linear regression found that Successful Aging Index (SAI) scores significantly predicted gerotranscendence (R2 = .10, F(1, 46) = 5.157, p = .028) and Herth Hope Index scores (R2 = .36, F(1, 46) = 25.850, p <.001). Higher Sense of Coherence (SoC) and Gerotranscendence Scale scores among those with no firsthand trauma experience suggest that experiencing traumatic events firsthand may adversely affect the aging process. Implications: Therefore, exploration of trauma experiences, with mental health referrals as appropriate are clinical implications to consider.

8.
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.

9.
JMIR Form Res ; 8: e55732, 2024 Jul 09.
Artículo en Inglés | MEDLINE | ID: mdl-38980716

RESUMEN

BACKGROUND: Community health center (CHC) patients experience a disproportionately high prevalence of chronic conditions and barriers to accessing technologies that might support the management of these conditions. One such technology includes tools used for remote patient monitoring (RPM), the use of which surged during the COVID-19 pandemic. OBJECTIVE: The aim of this study was to assess how a CHC implemented an RPM program during the COVID-19 pandemic. METHODS: This retrospective case study used a mixed methods explanatory sequential design to evaluate a CHC's implementation of a suite of RPM tools during the COVID-19 pandemic. Analyses used electronic health record-extracted health outcomes data and semistructured interviews with the CHC's staff and patients participating in the RPM program. RESULTS: The CHC enrolled 147 patients in a hypertension RPM program. After 6 months of RPM use, mean systolic blood pressure (BP) was 13.4 mm Hg lower and mean diastolic BP 6.4 mm Hg lower, corresponding with an increase in hypertension control (BP<140/90 mm Hg) from 33.3% of patients to 81.5%. Considerable effort was dedicated to standing up the program, reinforced by organizational prioritization of chronic disease management, and by a clinician who championed program implementation. Noted barriers to implementation of the RPM program were limited initial training, lack of sustained support, and complexities related to the RPM device technology. CONCLUSIONS: While RPM technology holds promise for addressing chronic disease management, successful RPM program requires substantial investment in implementation support and technical assistance.

10.
BMC Prim Care ; 25(1): 253, 2024 Jul 12.
Artículo en Inglés | MEDLINE | ID: mdl-38997659

RESUMEN

OBJECTIVES: General practitioners are trained to care for patients with a high level of responsibility and professional competency. However, there are few reports on the physical and mental health status of general practitioners (GPs) in China, particularly regarding help seeking and self-treatment. The primary aims of this study were to explore GPs' expectations of their own family doctors and their reflection on role positioning, and to explore the objective factors that hinder the system of family doctors. STUDY DESIGN: Cross-sectional study. METHODS: We conducted an online survey of Chinese GPs. Descriptive statistics were used to summarize the findings. RESULTS: More than half of the participants (57.20%) reported that their health was normal over the past year. A total of 420 participants (23.35%) reported having chronic diseases. For sleep duration, 1205 participants (66.98%) reported sleeping 6-8 h per day; 473 participants (26.29%) reported chronic insomnia. Two hundred thirty-one participants (12.84%) had possible depression. A total of 595 (33.07%) participants reported that they had contracted a fixed family doctor. In terms of preventing themselves from contracting for a family doctor, the following factors were identified: lack of sufficient time (54.81%), could solve obstacles themselves (50.97%), and embarrassment (24.24%). The proportion of the contract group (12.44%) taking personal relationship as a consideration was higher than that of the non-contract group (7.64%) (χ2 = 10.934 P = 0.01). Most participants (79.90%) in the non-signed group reported never having seen a family doctor. In terms of obstacles, more than half of the signed group thought that they could solve obstacles themselves, while the non-signed group (39.20%) was less confident in the ability of family doctors than the signed group (29.75%) (χ2 = 15.436, P < 0.01). CONCLUSIONS: GPs work under great pressure and lack of self-care awareness, resulting in an increased prevalence of health conditions. Most GPs did not have a regular family doctor. Having a family doctor with a fixed contract is more conducive to the scientific management of their health and provides a reasonable solution to health problems. The main factors hindering GPs from choosing a family doctor were time consumption, abilities to solve obstacles themselves, and trust in the abilities of GPs. Therefore, simplifying the process of family doctor visits, Changing the GPs' medical cognition, and strengthening the policy of GP training would be conducive to promoting a family doctor system that enhances hierarchical diagnosis and treatment. International collaboration could integrate GP health support into global healthcare system.


Asunto(s)
Médicos Generales , Estado de Salud , Humanos , Estudios Transversales , China , Masculino , Femenino , Adulto , Persona de Mediana Edad , Médicos Generales/psicología , Actitud del Personal de Salud , Encuestas y Cuestionarios , Servicios Contratados , Enfermedad Crónica/epidemiología , Médicos de Familia/psicología
11.
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
12.
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
13.
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
14.
Front Med (Lausanne) ; 11: 1216209, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38745739

RESUMEN

Background: Achalasia is a rare motility disorder affecting the oesophagus, leading to difficulties with eating and drinking. Participants in previous studies reported that they needed more social, clinical and behavioural support in the long-term management of achalasia. This study, therefore aimed to 1) identify the most challenging eating behaviour for people living with achalasia and 2) co-design a behaviour change intervention to help address the challenges they experience. Methods: This study used a qualitative approach involving online focus groups. The COM-B model was the theoretical framework, with behaviour change techniques (BCTs) as the active ingredients that target a mixture of capability, opportunity and/or motivation. Three focus groups were undertaken to obtain a range of input from different people living with achalasia. Participants in this study identified the target behaviour, prioritised the different BCTs which most resonated with them to design an intervention and decided on the mode of delivery. The research team analysed the techniques that helped participants with their eating behaviour using the COM-B model as a framework to create the intervention. Results: The 24 participants in this study identified "eating in a social setting" as the target behaviour for the intervention. A workbook that can be personalised by the individual was the most suitable intervention. The workbook structure aligns with the constructs of the COM-B model. It includes reflection, activities and goal-setting sections based on what was indicated to be useful for the majority of the participants. Key techniques to overcome the challenges with eating in a social setting included social support, regulation to reduce negative emotions, goals and planning. Conclusion: Using a focus group approach with the COM-B model as the theoretical framework, the participants in this study developed an intervention to support people living with achalasia. In order to achieve long-term behaviour change, engagement with a personalised workbook could facilitate eating in a social setting. Future work will need to pilot the workbook to ensure it can support people to improve their quality of life and complement the ongoing care they receive from health services.

15.
J Psychosom Res ; 181: 111668, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38640771

RESUMEN

OBJECTIVE: In this study, we examined the extent to which parents and their children with a chronic condition communicate their stress to one another and whether stress communication is associated with different forms of dyadic coping. METHODS: In a sample of 239 parent-child dyads, self-reported stress communication and different forms of perceived dyadic coping (i.e., emotion-oriented, problem-oriented, and negative dyadic coping) were assessed using a cross-sectional design. RESULTS: We first found that children's stress communication was positively associated with more positive (r = 0.28, p < .001) and less negative dyadic coping responses by children (r = -0.22, p < .001). Children's stress communication was also associated with more positive (r = 0.52, r = 0.45, p's < 0.001), and less negative dyadic coping responses by parents (r = -0.19, p < .001). Using dyadic data of children with a chronic condition and their parents, we found that more stress communication of children was associated with healthier coping responses of both children (perceived emotion-oriented dyadic coping: ß = 0.23, p < .001) and parents (perceived emotion-oriented dyadic coping: ß = 0.33, p < .001; perceived problem-oriented dyadic coping: ß = 0.22, p < .001). CONCLUSION: This underscores the importance of communication and adaptive coping strategies of parents and children in the context of a child's chronic condition. These findings may help us find ways to support children and their parents to optimally communicate about and deal with their stress.


Asunto(s)
Adaptación Psicológica , Relaciones Padres-Hijo , Estrés Psicológico , Humanos , Masculino , Femenino , Niño , Enfermedad Crónica/psicología , Estudios Transversales , Estrés Psicológico/psicología , Adulto , Padres/psicología , Emociones , Comunicación , Adolescente
16.
JMIR Form Res ; 8: e54373, 2024 Apr 26.
Artículo en Inglés | MEDLINE | ID: mdl-38669074

RESUMEN

BACKGROUND: The growth in the capabilities of telehealth have made it possible to identify individuals with a higher risk of uncontrolled diabetes and provide them with targeted support and resources to help them manage their condition. Thus, predictive modeling has emerged as a valuable tool for the advancement of diabetes management. OBJECTIVE: This study aimed to conceptualize and develop a novel machine learning (ML) approach to proactively identify participants enrolled in a remote diabetes monitoring program (RDMP) who were at risk of uncontrolled diabetes at 12 months in the program. METHODS: Registry data from the Livongo for Diabetes RDMP were used to design separate dynamic predictive ML models to predict participant outcomes at each monthly checkpoint of the participants' program journey (month-n models) from the first day of onboarding (month-0 model) up to the 11th month (month-11 model). A participant's program journey began upon onboarding into the RDMP and monitoring their own blood glucose (BG) levels through the RDMP-provided BG meter. Each participant passed through 12 predicative models through their first year enrolled in the RDMP. Four categories of participant attributes (ie, survey data, BG data, medication fills, and health signals) were used for feature construction. The models were trained using the light gradient boosting machine and underwent hyperparameter tuning. The performance of the models was evaluated using standard metrics, including precision, recall, specificity, the area under the curve, the F1-score, and accuracy. RESULTS: The ML models exhibited strong performance, accurately identifying observable at-risk participants, with recall ranging from 70% to 94% and precision from 40% to 88% across the 12-month program journey. Unobservable at-risk participants also showed promising performance, with recall ranging from 61% to 82% and precision from 42% to 61%. Overall, model performance improved as participants progressed through their program journey, demonstrating the importance of engagement data in predicting long-term clinical outcomes. CONCLUSIONS: This study explored the Livongo for Diabetes RDMP participants' temporal and static attributes, identification of diabetes management patterns and characteristics, and their relationship to predict diabetes management outcomes. Proactive targeting ML models accurately identified participants at risk of uncontrolled diabetes with a high level of precision that was generalizable through future years within the RDMP. The ability to identify participants who are at risk at various time points throughout the program journey allows for personalized interventions to improve outcomes. This approach offers significant advancements in the feasibility of large-scale implementation in remote monitoring programs and can help prevent uncontrolled glycemic levels and diabetes-related complications. Future research should include the impact of significant changes that can affect a participant's diabetes management.

17.
J Pediatr Health Care ; 38(4): 574-585, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38661591

RESUMEN

INTRODUCTION: Congenital heart disease (CHD) is the most prevalent congenital disability globally. This study aimed to describe parents' perspectives on financial stressors related to having a child with CHD using a descriptive qualitative approach. METHOD: Qualitative data were obtained from parents of children with CHD in a cross-sectional web-based survey study. Iterative data analysis was used to develop essential themes that enabled a rich description of 147 parents' perspectives. RESULTS: Parents identified five financial stressors: perpetual worries about health insurance, facing the dilemma of "making too much money," struggling to balance work, worrying over having an emerging adult with CHD, and constant constraints because of financial needs. DISCUSSION: As experts in pediatric care, pediatric advanced practice providers need to work with policymakers to provide further financial assistance and sufficient insurance coverage for families that struggle to balance finances for the whole family and children with CHD.


Asunto(s)
Estrés Financiero , Cardiopatías Congénitas , Padres , Investigación Cualitativa , Humanos , Cardiopatías Congénitas/economía , Cardiopatías Congénitas/psicología , Padres/psicología , Masculino , Femenino , Estudios Transversales , Niño , Adulto , Estrés Financiero/psicología , Adolescente , Adulto Joven , Preescolar , Seguro de Salud/economía , Seguro de Salud/estadística & datos numéricos , Encuestas y Cuestionarios
18.
JMIR Hum Factors ; 11: e46811, 2024 04 05.
Artículo en Inglés | MEDLINE | ID: mdl-38578675

RESUMEN

BACKGROUND: Information and communication technologies (ICTs) have been positioned as useful tools to facilitate self-care. The interaction between a patient and technology, known as usability, is particularly important for achieving positive health outcomes. Specific characteristics of patients with chronic diseases, including multimorbidity, can affect their interaction with different technologies. Thus, studying the usability of ICTs in the field of multimorbidity has become a key element to ensure their relevant role in promoting self-care. OBJECTIVE: The aim of this study was to analyze the usability of a technological tool dedicated to health and self-care in patients with multimorbidity in primary care. METHODS: A descriptive observational cross-sectional usability study was performed framed in the clinical trial in the primary care health centers of Madrid Health Service of the TeNDER (Affective Based Integrated Care for Better Quality of Life) project. The TeNDER technological tool integrates sensors for monitoring physical and sleep activity along with a mobile app for consulting the data collected and working with self-management tools. This project included patients over 60 years of age who had one or more chronic diseases, at least one of which was mild-moderate cognitive impairment, Parkinson disease, or cardiovascular disease. From the 250 patients included in the project, 38 agreed to participate in the usability study. The usability variables investigated were effectiveness, which was determined by the degree of completion and the total number of errors per task; efficiency, evaluated as the average time to perform each task; and satisfaction, quantified by the System Usability Scale. Five tasks were evaluated based on real case scenarios. Usability variables were analyzed according to the sociodemographic and clinical characteristics of patients. A logistic regression model was constructed to estimate the factors associated with the type of support provided for task completion. RESULTS: The median age of the 38 participants was 75 (IQR 72.0-79.0) years. There was a slight majority of women (20/38, 52.6%) and the participants had a median of 8 (IQR 7.0-11.0) chronic diseases. Thirty patients completed the usability study, with a usability effectiveness result of 89.3% (134/150 tasks completed). Among the 30 patients, 66.7% (n=20) completed all tasks and 56.7% (17/30) required personalized help on at least one task. In the multivariate analysis, educational level emerged as a facilitating factor for independent task completion (odds ratio 1.79, 95% CI 0.47-6.83). The median time to complete the total tasks was 296 seconds (IQR 210.0-397.0) and the median satisfaction score was 55 (IQR 45.0-62.5) out of 100. CONCLUSIONS: Although usability effectiveness was high, the poor efficiency and usability satisfaction scores suggest that there are other factors that may interfere with the results. Multimorbidity was not confirmed to be a key factor affecting the usability of the technological tool. TRIAL REGISTRATION: Clinicaltrials.gov NCT05681065; https://clinicaltrials.gov/study/NCT05681065.


Asunto(s)
Multimorbilidad , Autocuidado , Anciano , Femenino , Humanos , Persona de Mediana Edad , Enfermedad Crónica , Estudios Transversales , Calidad de Vida , Masculino , Ensayos Clínicos como Asunto
19.
Cureus ; 16(3): e57027, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38681366

RESUMEN

This review explores the trends and patterns of non-communicable disease (NCD) risk factors in India, with a focus on tobacco use, unhealthy diet, physical inactivity, and air pollution. Drawing upon existing literature and data, the review highlights the substantial burden imposed by NCDs and their associated risk factors on public health and healthcare systems in India. Key findings reveal the widespread prevalence of these risk factors, particularly among certain demographic groups and in urban areas. Socioeconomic disparities also play a significant role in shaping the distribution of NCD risk factors across the population. The review underscores the importance of addressing NCD risk factors through evidence-based interventions and policies tailored to the Indian context. Furthermore, it emphasizes the need for multi-sectoral collaboration among government agencies, healthcare providers, civil society organizations, academia, industry partners, and communities to mitigate the NCD epidemic effectively. By mobilizing collective efforts and resources, India can make significant strides in preventing and controlling NCDs, thereby enhancing population health and well-being.

20.
Front Immunol ; 15: 1369295, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38650940

RESUMEN

Introduction: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents substantial challenges in patient care due to its intricate multisystem nature, comorbidities, and global prevalence. The heterogeneity among patient populations, coupled with the absence of FDA-approved diagnostics and therapeutics, further complicates research into disease etiology and patient managment. Integrating longitudinal multi-omics data with clinical, health,textual, pharmaceutical, and nutraceutical data offers a promising avenue to address these complexities, aiding in the identification of underlying causes and providing insights into effective therapeutics and diagnostic strategies. Methods: This study focused on an exceptionally severe ME/CFS patient with hypermobility spectrum disorder (HSD) during a period of marginal symptom improvements. Longitudinal cytokine profiling was conducted alongside the collection of extensive multi-modal health data to explore the dynamic nature of symptoms, severity, triggers, and modifying factors. Additionally, an updated severity assessment platform and two applications, ME-CFSTrackerApp and LexiTime, were introduced to facilitate real-time symptom tracking and enhance patient-physician/researcher communication, and evaluate response to medical intervention. Results: Longitudinal cytokine profiling revealed the significance of Th2-type cytokines and highlighted synergistic activities between mast cells and eosinophils, skewing Th1 toward Th2 immune responses in ME/CFS pathogenesis, particularly in cognitive impairment and sensorial intolerance. This suggests a potentially shared underlying mechanism with major ME/CFS comorbidities such as HSD, Mast cell activation syndrome, postural orthostatic tachycardia syndrome (POTS), and small fiber neuropathy. Additionally, the data identified potential roles of BCL6 and TP53 pathways in ME/CFS etiology and emphasized the importance of investigating adverse reactions to medication and supplements and drug interactions in ME/CFS severity and progression. Discussion: Our study advocates for the integration of longitudinal multi-omics with multi-modal health data and artificial intelligence (AI) techniques to better understand ME/CFS and its major comorbidities. These findings highlight the significance of dysregulated Th2-type cytokines in patient stratification and precision medicine strategies. Additionally, our results suggest exploring the use of low-dose drugs with partial agonist activity as a potential avenue for ME/CFS treatment. This comprehensive approach emphasizes the importance of adopting a patient-centered care approach to improve ME/CFS healthcare management, disease severity assessment, and personalized medicine. Overall, these findings contribute to our understanding of ME/CFS and offer avenues for future research and clinical practice.


Asunto(s)
Citocinas , Índice de Severidad de la Enfermedad , Adulto , Humanos , Masculino , Citocinas/metabolismo
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