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Introducción: La calidad de vida relacionada con la salud (CVRS) y los estados de ánimo son indicadores cruciales del bienestar en adolescentes, pero su relación con estudiantes de Antioquia, Colombia, no ha sido ampliamente estudiada. Objetivo: Determinar la CVRS y los estados de ánimo en escolares de Antioquia-Colombia. Materiales y métodos: Estudio transversal con 1957 escolares de 9 a 20 años. Se aplicaron mediciones de CVRS, ansiedad, depresión, hostilidad y alegría, actividad física, comportamiento sedentario, apoyo social de padres y nivel socioeconómico. Resultados: La calidad de vida alta (CVA) es más elevada en hombres, personas con alegría, estudiantes con apoyo de padres, activos físicamente y personas de nivel socioeconómico alto y medio. AL aumentar un año de edad, disminuye en un 15 % la CVA, y al aumentar la depresión, la ansiedad y el comportamiento sedentario disminuye la CVA. Además, los niveles de depresión y ansiedad son mayores en mujeres, estudiantes mayores, sin apoyo de los padres y personas sedentarias. Conclusiones: La CVRS se asocia con estados de ánimo, actividad física, comportamiento sedentario y apoyo de los padres; mientras que los estados de ánimo se asocian con el sexo, el apoyo de los padres, la CVS y el sedentarismo.

Introduction: Even though health-related quality of life (HRQL) and mood states are key indicators of the well-being of adolescents, their relationship has not been analyzed in students from Antioquia, Colombia. Objective: To determine HRQL and mood states in schoolchildren from Antioquia. Materials and methods: A cross-sectional study was conducted on 1,957 schoolchildren and adolescents aged between 9 and 20 years. Measurements of HRQL, anxiety, depression, hostility and happiness, physical activity, sedentary behavior, parental social support, and socioeconomic status were applied. Results: A high quality of life (HQL) was observed more frequently in male participants, students with parental support, physically active, and those belonging to medium and high socioeconomic status. HQL decreased 15% as their age increased by one year. Also, HQL was reduced when depression, anxiety, and sedentary behavior increased. Furthermore, depression and anxiety levels were higher in women, older students, as well as in those without parental control and with sedentary behavior. Conclusions: HRQL is associated with mood states, physical activity, sedentary behavior, and parental support. In contrast, mood states are related to gender, parental support, HQL, and sedentary lifestyle.

Introdução: A qualidade de vida relacionada à saúde (CVRS) e os estados de humor são indicadores cruciais de bem-estar em adolescentes, mas sua relação com estudantes de Antioquia, Colômbia, não foi amplamente estudada. Objetivo: Determinar a CVRS e os estados de humor em escolares de Antioquia-Colômbia. Materiais e métodos: Estudo transversal com 1.957 escolares de 9 a 20 anos. Foram aplicadas medidas de QVRS, ansiedade, depressão, hostilidade e felicidade, atividade física, comportamento sedentário, apoio social dos pais e nível socioeconômico. Resultados: A alta qualidade de vida (CVA) é maior em homens, pessoas com alegria, estudantes com apoio parental, fisicamente ativos e pessoas de nível socioeconômico alto e médio. À medida que a idade aumenta em um ano, diminui em 15% o CVA, e ao aumentar a depressão, a ansiedade e o comportamento sedentário aumentam, o CVA diminui. Além disso, os níveis de depressão e ansiedade são mais elevados nas mulheres, nos estudantes mais velhos, sem apoio dos pais e nas pessoas sedentárias. Conclusões: A QVRS está associada a estados de humor, atividade física, comportamento sedentário e apoio parental; enquanto os estados de humor estão associados ao sexo, apoio parental, CVS e estilo de vida sedentário.

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El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

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El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

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As queimaduras provocam efeitos físicos e psicológicos devastadores nos indivíduos, sobretudo em crianças e adolescentes, e podem modificar a qualidade de vida da pessoa. O objetivo foi analisar o impacto das cicatrizes por queimaduras em crianças menores de oito anos na interação com amigos, família e escola, na perspectiva dos pais. Estudo quantitativo de corte transversal realizado com os pais de crianças <8 anos de idade, vítimas de queimaduras e internadas em um Centro de Tratamento de Queimados no norte do Paraná e acompanhadas ambulatorialmente, de 2017 a 2020. A coleta de dados ocorreu por meio de dois instrumentos: caracterização sociodemográfica e clínica; e Brisbane Burn Scar Impact Profile. Realizou-se análise descritiva e teste Qui-quadrado utilizando-se o SPSS®. Participaram 34 pais cujas crianças sofreram queimaduras, sendo 52,9% de 1 a 3 anos de idade, 58,8% sexo masculino, 82,2% por agente etiológico térmico e a internação foi de 73,5% devido à Superfície Corpórea Queimada ≤20%. Após a alta os pais identificaram que as cicatrizes de queimaduras tinham "um pouco" e "pouco" impacto nas cicatrizes nas relações de amizade e na interação social. Para os pais, prevaleceu a resposta "nada" de impacto, seguido por "um pouco" e "muito" na escola, nas brincadeiras, nos jogos e nas atividades diárias. Quanto às reações emocionais e ao humor, a maior parte dos pais considerou "nada". Nesse sentido, os pais responderam às questões quanto à própria percepção sobre as atividades diárias do seu filho e, em geral, a cicatriz de queimadura não impactou na qualidade de vida da criança.

Burns cause devastating physical and psychological effects on individuals, especially children and adolescents, and can change a person's quality of life. The objective was to analyze the impact of burn scars in children under eight years of age in the interaction with friends, family and school, from the parents' perspective. Quantitative cross-sectional study carried out with the parents of children <8 years old who were victims of burns and admitted to a Burn Treatment Center in northern Paraná and monitored on an outpatient basis, from 2017 to 2020. Data collection occurred using two instruments: sociodemographic and clinical characterization; Brisbane Burn Scar Impact Profile. Descriptive analysis and Chi-square test were performed using SPSS®. 34 parents participated whose children suffered burns, 52.9% aged 1 to 3 years old, 58.8% male, 82.2% due to thermal etiological agent and 73.5% hospitalization was due to Burned Body Surface ≤ 20%. After discharge, the parents identified that the burn scars had "a little" and "little" impact on the scars in friendship relationships and social interaction. For parents, the answer "nothing" of impact prevailed, followed by "a little" and "a lot" in school, play, games and daily activities. As for emotional reactions and mood, most parents considered "nothing" that impacted the child with burn scars. In this sense, parents answered questions regarding their own perception of their child's daily activities and, in general, the burn scar did not impact the child's quality of life.

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Colostomy irrigation is a procedure that allows patients to achieve a certain degree of bowel control, and a period free of stoma effluent. It has the potential to improve quality of life, body image and confidence, and reduce patient anxiety. It may also help reduce odour and flatus, prevent/address peristomal skin irritation and alleviate constipation. Because it can reduce or eliminate the need for a colostomy bag, it may also cut expenditure on stoma appliances. However, colostomy irrigation is not offered to patients as standard. A protocol was drawn up to ensure colostomy irrigation was routinely offered to suitable patients and to provide them with a structured follow-up to ensure they were well supported throughout the first year of carrying out the procedure. Quality of life and the efficacy of colostomy irrigation can be monitored using questionnaires on these two issues. Two case studies demonstrate how patients' quality of life can improve when using colostomy irrigation as part of their stoma care routine.

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PURPOSE: Community participation is believed to be positively associated with recovery experiences and quality of life for people with serious mental illnesses (PSMIs). However, the underlying mechanism remains unclear. This study examined the mediating effect of self-stigma on the relationship between community participation and personal recovery experiences and quality of life among PSMIs. METHODS: Structural equation modeling and mediation analyses were conducted based on a community sample of 315 PSMIs in Beijing, China, who were surveyed using the Community Participation Domains Measure, Internalized Stigma of Mental Illness, Recovery Assessment Scale, Quality of Life Scale, and a demographic questionnaire. Most were in their middle age. About half were married, and half were females. Most participants got disability certificates. RESULTS: The results indicate that community participation is directly associated with personal recovery of PSMIs (P < 0.01) and indirectly associated with personal recovery through the mediation of self-stigma (P < 0.01). Additionally, community participation does not have a direct effect on the quality of life of PSMIs but shows an indirect effect through the mediation of self-stigma (P < 0.01). The findings suggest that self-stigma mediates the relationship between community participation and both the subjective perception of recovery and quality of life. CONCLUSION: The findings indicate that community participation for PSMIs should be enhanced. Tailored individual intervention services should be implemented to boost positive self-awareness and reduce self-stigma through active engagement in activities. Such participation has the potential to improve subjective experiences of recovery and overall quality of life.

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INTRODUCTION: Atopic dermatitis is a complex, chronic, inflammatory skin disease that requires long-term control of symptoms like itch and sleep loss and improvement in quality of life, in addition to reduction of clinical signs. Lebrikizumab is a selective interleukin-13 inhibitor approved in the European Union, United Kingdom, United Arab Emirates, Canada, and Japan for treatment of moderate-to-severe atopic dermatitis in adults and adolescents. Here, we assess the magnitude of changes across signs and symptoms of atopic dermatitis with lebrikizumab monotherapy over the 16-week induction period in two phase 3 studies, ADvocate1 and ADvocate2. METHODS: Eligible adults (aged ≥ 18 years) and adolescents (aged 12 to < 18 years and weighing ≥ 40 kg) with moderate-to-severe atopic dermatitis were randomized to receive either 250 mg of lebrikizumab or placebo subcutaneously every two weeks. Least squares mean percentage change from baseline through week 16 was compared between lebrikizumab and placebo using mixed model repeated measure analysis for the following endpoints: Eczema Area and Severity Index (EASI), Pruritus Numeric Rating Scale (NRS), Sleep-Loss Scale, Patient-Oriented Eczema Measure (POEM), and Dermatology Life Quality Index (DLQI). RESULTS: In both trials, significant (P < 0.05) improvements were observed for lebrikizumab treatment compared with placebo at each 2-week timepoint for EASI, Pruritus NRS, Sleep-Loss Scale, and POEM, and at each 4-week timepoint for DLQI, through week 16. Statistically significant (P < 0.001) improvements were observed at 16 weeks for lebrikizumab treatment versus placebo in ADvocate1/ADvocate2 for EASI (71.9%/75.0% vs. 35.6%/43.3%), Pruritus NRS (53.3%/46.3% vs. 21.4%/18.0%), Sleep-Loss Scale (57.7%/55.6% vs. 23.9%/25.5%), POEM (54.4%/45.8% vs. 18.8%/16.9%), and DLQI (64.2%/60.5% vs. 28.5%/32.2%). Patient photos show improvements in skin appearance when disease measures improve. CONCLUSIONS: Lebrikizumab monotherapy resulted in significant and fast improvements in multiple dimensions of disease (clinical signs, symptoms, and quality of life) over 16 weeks in patients with moderate-to-severe atopic dermatitis. TRIAL REGISTRATION: ClinicalTrials.gov identifiers, NCT04146363; NCT04178967.

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OBJECTIVE: The objective is to evaluate the efficacy and safety of testosterone supplementation in testicular cancer survivors with treatment-related hypogonadism. DATA SOURCES: This systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards and used Embase, PubMed/MEDLINE, Cochrane Central, Web of Science Core Collection, Korean Journal Index, SciELO, and Global Index Medicus to obtain data in June of 2024. STUDY SELECTION AND DATA EXTRACTION: Analyses evaluating testosterone supplementation in testicular cancer survivors with treatment-induced hypogonadism were included. Any analyses not assessing supplementation in this population or deemed unretrievable were excluded. DATA SYNTHESIS: Ten analyses were included for analysis. A total of 332 bilateral or unilateral testicular cancer survivors with treatment-influenced hypogonadism were reviewed, with 238 patients receiving testosterone replacement. Eight of the 10 analyses assessed participants without poor quality-of-life (QOL) metrics, metabolic factors, and bone mineral density (BMD) at baseline and only found a significant benefit in fat distribution metrics with testosterone supplementation. Two analyses evaluated participants with poor QOL metrics or BMD at baseline and showed improvements in QOL or BMD with testosterone supplementation. RELEVANCE TO PATIENT CARE AND CLINICAL PRACTICE: There is robust evidence regarding the efficacy and safety of testosterone replacement in hypogonadal individuals but limited evidence specifically evaluating supplementation in testicular cancer survivors with treatment-influenced hypogonadism. CONCLUSIONS: The results suggest testosterone replacement may be beneficial in patients with impaired QOL metrics, metabolic factors, and BMD at baseline; the results also suggest that routine supplementation for all individuals in this patient population lacks efficacy.

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OBJECTIVE: To assess the impact of treatment with orthodontic aligners (OA) on oral health-related quality of life (OHRQoL) in patients with trisomy 21 (T21) compared to non-syndromic patients. MATERIALS AND METHODS: The sample consisted of 30 patients, both sexes, aged between 11 and 35 years, divided into two groups: T21 (n = 10, patients with T21, treated prospectively) and CONTROL (n = 20, control group, non-syndromic patients, from the Orthodontic Laboratory of UNOPAR). In both groups, patients were treated with Invisalign orthodontic aligners (Align Technology), following the same treatment parameters. Participants, assisted by their caregivers, when necessary, answered Oral Health Impact Profile (OHIP-14) instrument and the patient's guardians answered the Oral Health Scale for People with Down's syndrome (OHDS) instrument, before (T0) and after 30 (T1), 180 (T2), and 365 (T3) days from the start of treatment. Friedman tests with Bonferroni correction and Mann-Whitney tests were used (p < .05). RESULTS: For the OHDS instrument, it was observed that for the eating and communication domains and an overall score, the treatment with OA positively impacted the lives of T21 patients (p < .05). Regarding the OHIP-14 instrument, the intragroup evaluation showed that in the CONTROL group, there was no significant difference between the evaluated times; while for the T21 group, there was a significant positive impact (p < .05). CONCLUSION: The results showed that the treatment with aligners positively impacted the OHRQoL of T21 patients, and these results were perceived by caregivers, mainly in relation to issues related to eating and communication.

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LAY ABSTRACT: Health-related quality of life reflects a person's perspective on their well-being in physical, mental, social, work-related, and other aspects of health or life. Autistic adults typically report difficulties in many or all of these domains and, thus, often experience their health-related quality of life being reduced. Nonetheless, they do not obtain the professional support they need and report barriers to accessing or receiving appropriate healthcare. We know little about the impact of barriers to healthcare on health-related quality of life in autistic adults. In the present study, 311 autistic adults without intellectual disability in Germany completed an online survey on their current health-related quality of life and the number of barriers to healthcare they experience. In addition, they were asked about their personal and clinical background as well as about the amount of healthcare and support they recently received. We investigated how this information and, particularly, barriers to healthcare explained variations in individual levels of health-related quality of life. We found that barriers to healthcare, compared to most other variables, were a strong predictor of health-related quality of life: The more barriers autistic adults reported, the lower their experienced psychological and physical well-being. To our knowledge, this is the first paper to examine the relationship between barriers to healthcare and health-related quality of life in autism. Our results suggest that healthcare providers need to become aware of the barriers individuals with autism have in seeking and getting healthcare. Improved access to services might contribute to better health-related quality of life in autistic adults.

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BACKGROUND AND AIMS: Arginase 1 deficiency (ARG1-D) is a ultrarare disease with manifestations that cause mobility and cognitive impairment that progress over time and may lead to early mortality. Diseases such as ARG1-D have a major impact also outside of the health care sector and the aim of this study was to estimate the current burden of disease associated with ARG1-D from a societal perspective. METHODS: The study was performed as a web-based survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, United Kingdom). The survey was distributed at participating clinics and included questions on e.g. symptoms (including the Gross Motor Function Classification System, GMFCS, and cognitive impairment), health care use, medication, ability to work, caregiving, and impact on health-related quality-of-life (HRQoL) using the EQ-5D-5L. RESULTS: The estimated total mean societal cost per patient and year was £63,775 (SD: £49,944). The cost varied significantly with both mobility impairment (from £49,809 for GMFCS level 1 to £103,639 for GMFCS levels 3-5) and cognitive impairment (from £43,860 for mild level to £99,162 for severe level). The mean utility score on the EQ-5D-5L for patients was 0.498 (SD: 0.352). The utility score also varied significantly with both mobility impairment (from 0.783 for GMFCS level 1 to 0.153 for GMFCS level 3-5) and cognitive impairment (from 0.738 for mild level to 0.364 for severe level). CONCLUSIONS: Similar to other studies of rare diseases, the study is based on a limited number of observations. However, the sample appear to be reasonably representative when comparing to previous studies of ARG1-D. This study shows that ARG1-D is associated with a high societal cost and significant impact on HRQoL. Earlier diagnosis and better treatment options that can postpone or withhold progression may therefore have a potential for improved HRQoL and savings for the patient, caregiver, and society.

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BACKGROUND: Individuals with Multiple Sclerosis (MS) experience impairments in heat dissipation, compromising core temperature regulation during exercise. OBJECTIVE: To examine the efficacy of combined head-and-neck cooling as administered via a commercially available cooling cap and neck wrap in mitigating increases in core temperature during exercise. METHODS: On separate days, ten (7 females) adults (46.1 ± 11.6 years) with relapsing-remitting MS performed semi-recumbent cycling consisting of an incremental exercise bout to volitional fatigue in a temperate environment (23 °C, 50 % relative humidity) while undergoing head-and-neck cooling using a cooling cap and neck wrap maintained at 10 °C (COLD) or 24-26 °C (NEUTRAL). Prior to and following a 30-minute post-exercise recovery, functional capacity was assessed by a battery of tests consisting of a 2-minute walk test, Timed 25-Foot Walk test, sit-to-stand test, and Berg Balance Scale. Core (ingestible pill) and skin temperatures were recorded continuously. The level of fatigue was measured with questionnaires. RESULTS: The duration of the incremental exercise test increased with the application of COLD (28.4 ± 5.1 min) versus NEUTRAL water (vs 20.8 ± 5.1 min) (p = 0.001) and was paralleled by a significant reduction in body temperatures (∼1 °C, p < 0.05). The distance covered during the 2-min walk test performed after the incremental exercise test increased with the COLD (176.5 ± 0.6 m), relative to the NEUTRAL condition (147.7 ± 43.5 m) (p = 0.01). Fatigue levels did not change between conditions. CONCLUSION: We show that head-and-neck cooling with cold water effectively enhances exercise tolerance and mitigates increases in core temperature during exercise in individuals with MS.

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OBJECTIVE: To understand the current status of occupational stress, occupational burn-out and sleep quality among ambulance drivers in Hengyang, China and to analyse the relationship between occupational stress, occupational burn-out and sleep quality of ambulance drivers. DESIGN: A cross-sectional study. SETTING: Prehospital emergency centre of third-class hospital in Hengyang, China. PARTICIPANTS: From October 2023 to December 2023, a cross-sectional survey was conducted, with 213 ambulance drivers from Hengyang, China, selected as participants. METHODS: General demographic questionnaires, the Chinese Occupational Stress Inventory, the Maslach Burnout Inventory and the Pittsburgh Sleep Quality Index were used for data collection and analysis. RESULTS: Occupational stress among ambulance drivers was positively correlated with occupational burn-out and sleep quality (r=0.528, 0.447, both p<0.01) while occupational burn-out was positively correlated with sleep quality (r=0.394, p<0.01). Occupational burn-out partially mediated the relationship between occupational stress and sleep quality among ambulance drivers, with a mediation effect value of 0.168, accounting for 26.09% of the total effect. CONCLUSION: The sleep quality of ambulance drivers in Hengyang, China is suboptimal, with occupational stress directly predicting sleep quality. Occupational burn-out plays a partial positive mediating role between occupational stress and sleep quality among ambulance drivers. Reducing occupational stress and burn-out is beneficial for improving the sleep quality of ambulance drivers.

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BACKGROUND AND OBJECTIVES: Exploring the quality of life of disabled elderly individuals in eldercare facilities holds significant importance in the improvement of service quality, the allocation of eldercare resources, and the enhancement of the well-being of the elderly. This study, grounded in the subjective perspective of disabled elderly individuals, aims to investigate their quality of life within eldercare institutions. RESEARCH DESIGN AND METHODS: A grounded theory approach was employed, involving semi-structured interviews with 35 participants. RESULTS: Data analysis revealed that the quality of life of disabled elderly individuals in Chinese elderly care institutions is characterized by "maintaining symbiosis in conflict" and encompasses four dimensions: complex adaptation process, complexities in social interactions, physical pain and the lonely soul. DISCUSSION AND IMPLICATIONS: Spending late years in elderly care institutions poses a trial and challenge for disabled elderly individuals, especially within a cultural environment that traditionally revolves around the "family" unit. In these institutions, disabled elderly individuals not only endure physical pain but also grapple with feelings of loneliness. They maintain the facade of family dignity by concealing true emotions, ensuring the harmonious and stable operation of the elderly care institution.Enhancing the quality of life for disabled elderly individuals requires not only an improvement in the service capabilities of elderly care institution staff but also collaborative efforts from policymakers and family members.

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BACKGROUND: Children utilizing invasive home mechanical ventilation (administered via tracheostomy tube) receive intensive care at home without the support of trained staff typically present in an intensive care unit; within the context of worsening home nursing shortages, much of the 24/7 care burden falls to families which are likely under supported. Prior reviews have explored the quality of life of children receiving various forms of mechanical ventilation, without addressing the impact on the family. Additionally, the literature inconsistently differentiates the unique experience of families with children using invasive home mechanical ventilation from non-invasive, which has lower morbidity and mortality and requires less nursing care in the home. Therefore, our study aims to explore and map the existing literature regarding the impact of invasive home mechanical ventilation on the child and family's quality of life. Identified gaps will inform future research focused on improving the family quality of life of children with invasive home mechanical ventilation. METHODS: Five databases will be searched using keywords and controlled vocabulary to identify relevant studies: Ovid Medline, Embase, Scopus, and Cochrane Library. English language studies will meet inclusion criteria if they include primary research studies of children or families of children utilizing invasive home mechanical ventilation at home and assess quality of life. Children and young adults aged 0-25 years will be included. We exclude studies of hospitalized children, studies focused solely on healthcare professional experiences or clinical outcomes, and those focused on the period surrounding discharge from admission for tracheostomy placement. Two independent reviewers will screen studies at the title/abstract and full-text levels. Two independent reviewers will extract data from relevant studies. Disagreements will be resolved by an independent third reviewer. A targeted grey literature search will be performed utilizing ProQuest, clinicaltrials.gov, WHO trial registry, Google Scholar, and professional societies. Findings will be presented in tables and figures along with a narrative summary. DISCUSSION: This scoping review seeks to map the literature and provide a descriptive report of the health-related quality of life of children using invasive home mechanical ventilation and their families. REGISTRATION: Open Science Framework https://doi.org/10.17605/OSF.IO/6GB84 Date of Registration: November 29, 2023.

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BACKGROUND: The network approach in the eating disorder (ED) field has confirmed important links between EDs and posttraumatic stress disorder (PTSD) symptoms. However, studies including comorbid symptoms are scarce, which limits our understanding of potentially important connections. We hypothesised that anxiety, depression and poor quality of life (QOL) would provide a more complete picture of central, maintaining factors. METHODS: Network analysis using R was performed in 2178 adult ED patients (91% female) admitted to residential treatment. Assessments included the ED Examination Questionnaire (EDEQ), the Eating Disorders Inventory (EDI-2), the PTSD Checklist for DSM-5 (PTSD clusters (PCL-5)), the Patient Health Questionnaire (PHQ-9), the Spielberger State-Trait Anxiety Scale (STAI), and the ED QOL Scale (EDQOL), which measure symptoms of EDs, PTSD, major depression, state-trait anxiety, and QOL, respectively. RESULTS: EDI-2 ineffectiveness showed the highest centrality (expected influence) followed by EDI-2 interoceptive awareness, STAI state anxiety, EDEQ shape concern, EDQOL psychological subscale, and PTSD cluster D (hyperarousal) symptoms. Eating Disorder Quality of Life psychological and physical-cognitive subscales and PHQ-9 major depressive, STAI state anxiety and PCL-5 PTSD cluster E (negative alterations in mood and cognition) symptoms showed the highest bridge expected influence, suggesting their interactive role in maintaining ED-PTSD comorbidity. CONCLUSIONS: This is the first network analysis of the interaction between ED and PTSD symptoms to include the comorbid measures of depression, anxiety, and QOL in a large clinical sample of ED patients. Our results indicate that several symptom clusters are likely to maintain ED-PTSD comorbidity and may be important targets of integrated treatment.

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BACKGROUND: Food-related quality of life (FRQoL) measures the impact of diet, eating behaviours and food-related anxiety on quality of life. Patients often view food and eating as central to symptom management. This is the first study to examine FRQoL in patients with inflammatory bowel disease, celiac sprue, achalasia and eosinophilic oesophagitis. METHODS: A total of 289 adults aged ≥18 years completed self-report measures evaluating the use of dietary treatment, FRQoL and other psychosocial outcomes. Principal component factor analysis evaluated potential subscales within the Food-Related Quality of Life Scale (FRQoL-29), to date validated only with a total score. Univariate analyses investigated differences in FRQoL based on diagnosis, whereas correlations and hierarchical regression identified relationships between FRQoL and psychosocial outcomes. RESULTS: Factor analysis revealed four subscales within the FRQoL-29, with hypervigilance around eating being the primary driver in total score. Patients reported substantial impacts of FRQoL, with those not using diet therapy scoring significantly higher for FRQoL than those on a diet with and without the support of a registered dietitian (RD). Both social (r = 0.41, p < 0.001) and physical (r = 0.31, p < 0.001) domains of health-related quality of life were higher in patients with greater FRQoL. CONCLUSION: FRQoL is significantly degraded in patients with organic gastrointestinal illness diseases, and hypervigilance around food appears to contribute most to this. Use of dietary treatment and meeting with an RD were associated with lower FRQoL, though it is unclear if patients sought RD assistance before FRQoL declined. Future studies on the relationship between dietary treatment, RD support and FRQoL are warranted.

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INTRODUCTION: Temporomandibular joint (TMJ) ankylosis is a debilitating condition characterised by the fusion of bony or fibrous tissues in the TMJ, resulting in restricted mouth opening, functional challenges and facial deformities. This report highlights the complexity and multifaceted nature of TMJ ankylosis and emphasises the significance of early intervention and a multidisciplinary approach. Distraction osteogenesis has emerged as a successful method for managing TMJ ankylosis and associated facial asymmetry. Post-distraction orthodontic management is essential to address occlusal changes, including posterior open bite and crossbite. DIAGNOSIS AND TREATMENT PLAN: A 17-year-old boy with unilateral right-sided TMJ ankylosis presented with restricted mouth opening, facial asymmetry and functional difficulties. Multidisciplinary treatment planning involved distraction osteogenesis, condylectomy, coronoidectomy and orthodontic correction to achieve proper occlusion and facial aesthetics. RESULTS: The treatment significantly improved facial aesthetics, mouth opening, occlusion and the patient's confidence and self-esteem. CONCLUSION: This case report underscores the complexity of TMJ ankylosis and the need for a comprehensive approach, including surgical and orthodontic interventions. Collaboration among healthcare professionals and ongoing research is vital to refine treatment approaches and improve the quality of life for patients with TMJ ankylosis.

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Objective: This study explores the depressive symptoms and quality of life (QoL) of women in relationships with partners diagnosed with ADHD, as well as the role of engagement in health-promoting activities (HPA) on these outcomes, spotlighting the often-neglected perspective of these women. Methods: Employing a cross-sectional approach, the study used Structural Equation Modeling (SEM) to explore associations between partners' ADHD functional impairment, women's involvement in HPA, and their depressive symptoms and QoL. Results: Functional impairment in partners with ADHD was positively associated with women's depressive symptoms and negatively associated with their QoL, whereas women's engagement in HPA was positively associated with their QoL and negatively associated with their depressive symptoms. Conclusions: The findings suggest that women partnered with individuals diagnosed with ADHD may face an elevated risk of depressive symptoms and lowered QoL. The results highlight the potential need for a more comprehensive clinical approach to adult ADHD treatment that considers functional impairments and the experiences of partners. Incorporating HPA into therapeutic strategies appears beneficial. However, longitudinal research is needed to examine the direction of these associations and to develop potential interventions to support these women.

RESUMEN

CONTEXT: Understanding former professional football players engagement with health promoting behaviors (physical exercise, high quality diet, and good sleep hygiene) will be helpful for developing lifestyle interventions to improve their feelings of well-being, a relatively understudied facet of health among this population. OBJECTIVE: Examine associations among health-promoting behaviors and subjective outcomes related to well-being among former National Football League (NFL) players. DESIGN: Cross-sectional. SETTING: Online or hard-copy survey. PATIENTS OR OTHER PARTICIPANTS: Former NFL players. MAIN OUTCOME MEASURES: Self-reported health-promoting behaviors (exercise frequency, diet quality, sleep duration and disturbance) and factors related to well-being (PROMIS ® Meaning and Purpose [MP], Self-Efficacy [SE], Ability to Participate in Social Roles and Activities [SRA]). Multivariable linear regression models were fit for each well-being-related factor with health-promoting behaviors as explanatory variables alongside select demographic, behavioral, and functional covariates. Models were fit for the full sample and separately for individual age groups: <30 years; 30-39 years; 40-49 years; 50-59 years; 60-69 years; and 70+ years. RESULTS: A total of 1,784 former NFL players (aged 52.3±16.3 years) completed the survey. Lower sleep disturbance was associated with better MP (ß[standard error]=-0.196[0.024]), SE (ß[standard error]=-0.185[0.024]), and SRA (ß[standard error]=-0.137[0.017]) in the full sample and almost all the individual age groups. More frequent moderate-to-vigorous exercise was associated with higher MP (ß[standard error]=0.068[0.025]) and SRA (ß[standard error]=0.151[0.065]) in the full sample, and with better MP, SE, and SRA among select middle-aged groups (between 40-69 years old). Diet quality, resistance training exercise frequency, other wellness activity frequency, and sleep duration were not associated with well-being-related factors in the full-group and sparse significant associations were observed in individual age group models. CONCLUSIONS: Lower sleep disturbance and more frequent moderate-to-vigorous exercise frequency may be important targets for improving overall health and well-being among former NFL players.