[Management of pediatric immune thrombocytopenia].

The new guidelines for pediatric immune thrombocytopenia (ITP) not only include changes to the name and staging of the disease, but also introduce the modified Buchanan's bleeding score for the assessment of bleeding symptoms. Treatments should aim to improve patients' health-related quality of life (HRQoL) based on a multidimensional assessment of not only platelet counts but also bleeding symptoms, as well as activity level, lifestyle, and access to healthcare. First-line therapy includes intravenous immunoglobulin therapy (IVIG) and short-term corticosteroids. Second-line therapy includes thrombopoietin receptor agonists, rituximab, and splenectomy. Many novel agents are also in development, with splenic-derived tyrosine kinase (Syk), Bruton's kinase (BTK), and fetal Fc receptor (FcRn) attracting attention as target molecules. Future developments in the treatment of pediatric ITP are eagerly awaited.

Risk and Protective Factors of Psychosocial Functioning in Survivors of Childhood Cancer: Results of the DCCSS-LATER Study.

OBJECTIVE: This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS). METHODS: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963-2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self-Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self-Rating Scale for Post-Traumatic Stress Disorder, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and Short Form-36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p < 0.004). RESULTS: A total of 1382 CCS participated, all diagnosed ≥ 15 years ago. The mean age of participating CCS was 36 years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self-esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self-esteem (10×), and perceived burden (9×). Self-esteem (all ß ≤ 0.47) and perceived burden (all ß ≤ 0.38) demonstrated strongest associations of medium/large size. CONCLUSIONS: Perceptions of childhood cancer, illness cognitions, self-esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio-demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self-esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges.

Quality of life and functional outcome of rectal cancer patients: A prospective cohort study.

AIM: In the last decade, the Netherlands has implemented various diagnostic and treatment strategies to enhance rectal cancer outcomes. This study, using data from the Prospective Dutch ColoRectal Cancer (PLCRC) cohort, investigates whether these multidisciplinary advancements have translated into improved health-related quality of life (HRQoL) and functional outcomes for the general Dutch rectal cancer population. METHODS: Patients with Stage I-III rectal cancer enrolled in the PLCRC cohort were included. HRQoL and functional outcomes were assessed 1 and 2 years after diagnosis using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), EORTC QLQ Colorectal Cancer 29 and the Low Anterior Resection Syndrome score. HRQoL and functional outcomes were compared based on year of diagnosis (2014-2019). RESULTS: A total of 1294 patients were included. Two years after diagnosis, patients diagnosed in 2019 (n = 392) had a clinically relevant higher score on physical (8.2, 95% CI 4.1-12.3), role (13.5, 95% CI 7.3-19.7) and social functioning (5.8, 95% CI 0.3-11.2) compared to those diagnosed in 2014 (n = 65). Additionally, patients diagnosed in 2019 experienced less fatigue 2 years after diagnosis compared to those diagnosed in 2014 (-8.6, 95% CI -14.1 to -3.0). The Low Anterior Resection Syndrome score showed no differences. CONCLUSION: The findings of this study suggest that over the past decade rectal cancer patients in the Netherlands have witnessed improvements in HRQoL across various domains. Most probably, the improvement is due to a combination of implementation of population screening, a more restrictive neoadjuvant radiotherapy policy and advances in minimally invasive surgery and organ preserving treatment options.

Breast-cancer specific comprehensive archive of Patient-Reported Outcome Measures (PROMs) for clinical research and clinical practice in oncology: Results from the PRO4All project.

BACKGROUND: Inclusion of patient-reported outcomes (PROs) in oncology clinical trials is strongly recommended. However, selecting the most appropriate patient-reported outcome measures (PROMs) is not easy. This study aimed to develop a breast cancer (BC) specific comprehensive archive of PROMs. METHODS: As part of the PRO4All project, we identified available PROMs in oncology by searching facit.org, eortc.org, eprovide.mapi-trust.org, PubMed, ema.europa.eu (European Public Assessment Reports) and published reviews. For this analysis, only BC tools were extracted. We described information about PROM name, type of questionnaire, questionnaire variant(s), recall period, number of items, and presence of minimum clinically important difference (MCID) reference in literature. Then, we assigned each item to a specific domain according to a predefined taxonomy of 38 items for outcome classification. RESULTS: We identified and analyzed 383 PROMs. Of these, 29 were BC specific, but 2 were excluded because the questionnaires description was not available. 6 (22.2 %) were variants of another questionnaire. All questionnaires were self-reported. In 6 cases (22.2 %) the recall period to consider was the "last week". The mean number of items per questionnaire was 25.81 (range 6-71). 602 items were assigned to an outcome domain: emotional functioning/wellbeing in 26.6 % of cases, physical functioning in 14.1 %, delivery of care in 10.8 %, and general outcomes in 10.5 %. MCID reference was found only in 4 (14.8 %) cases. CONCLUSIONS: The newly developed archive represents a useful tool to optimize the use of PROMs in the evaluation of treatments in BC patients, promoting a patient-centered approach both in clinical research and practice.

Oral health-related quality of life among women with temporomandibular disorders and hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder.

BACKGROUND: People with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSDs) are at greater risk of developing temporomandibular disorders (TMDs), perhaps due to the general joint hypermobility. There is, however, no information on how oral health-related quality of life (OHRQoL) is affected in people with hEDS or HSD with TMD. The authors' aim was to assess OHRQoL via the 14-item, short version Oral Health Impact Profile (OHIP-14), as well as associated risk factors in women with TMD symptoms and confirmed hEDS or HSD. METHODS: A digital questionnaire was sent to members of The Swedish National EDS Association who reported having a confirmed or suspected EDS or HSD diagnosis in the health care system from January through March 2022. Then, a sample of 133 women with confirmed hEDS or HSD and TMD symptoms was constructed, and information on the following variables was collected: TMD symptoms, age, general health, oral health-related factors, comorbid symptoms, and psychological factors. Linear regression analysis was conducted to investigate the association between these variables and the OHIP-14 summary score as the outcome. RESULTS: Most participants reported TMD pain symptoms (93.9%), temporomandibular joint clicking (89.5%), and crepitation (55.6%). The mean (SD) total OHIP-14 summary score was 21.0 (13.2). Oral function had the lowest impact (2.0 [2.4]) and orofacial pain had the highest impact on OHRQoL (3.9 [2.5]). Self-reported bruxism, poor general health, and comorbid symptoms were significantly associated with impaired OHRQoL. CONCLUSIONS: Women with confirmed hEDS or HSD and TMD symptoms have a considerably impaired OHRQoL. PRACTICAL IMPLICATIONS: The multidimensional phenomenon of OHRQoL in this group needs to be considered in management strategies.

Health-related quality of life in adults with Marfan syndrome.

BACKGROUND AND AIM: Marfan syndrome is a rare genetic connective tissue disorder. Research on health-related quality of life in Swedish patients is lacking. We aimed to examine health-related quality of life in patients with Marfan syndrome with respect to reference values, sex, and age. METHODS: Using the registry for adult CHD, Sahlgrenska University Hospital/Östra Hospital, between 1 April 2009 and 31 January 2023, we identified 1916 patients. Of these, we included 33 patients aged ≥18 years who were diagnosed with Marfan syndrome and had completed the 36-item Short-Form Health Survey. RESULTS: The median age was 32 years (interquartile range 25.5-47.0) and 22 (66.7%) were men. Patients with Marfan syndrome had significantly lower values than reference values for all scales in the Short-Form Health Survey except bodily pain, role-emotional, and the physical component summary score. For both men and women with Marfan syndrome, vitality was the subscale with the greatest percentage difference in comparison with healthy reference values (82% in women and 73% in men). Furthermore, men reported significantly higher vitality levels than women (62.5 points, interquartile range 43.8-75.0 vs. 35 points, interquartile range 10.0-65.0, p = 0.026). CONCLUSION: Adults with Marfan syndrome in Sweden showed lower health-related quality of life levels in comparison with reference values for most Short-Form Health Survey scales, and there were differences between patients with Marfan syndrome in terms of sex and age.

A national cross-sectional survey on community spinal cord injury individuals profiles, health-related quality of life and support services in China: implications for healthcare and rehabilitation.

BACKGROUND: Spinal cord injury (SCI) results in severe, permanent functional changes and has become a global health priority due to its high incidence, cost, and disability rate. Current national epidemiological data on SCI in China are limited and outdated. This study aimed to provide a comprehensive, national cross-sectional investigation of SCI epidemiology in China. METHODS: This cross-sectional study included 3055 SCI participants aged 8 to 78 years, conducted from May to September 2023. Data collected encompassed demographic characteristics, employment status, etiology, years lived with disability (YLD), family structure, caregiving status, income, health insurance, paralysis type, and health-related quality of life (HRQoL). Descriptive statistics analyses were used to assess demographic and injury characteristics. Group differences were assessed using t-tests, one-way ANOVA and Chi-square tests. Significant factors were examined using multivariate regression analysis. RESULTS: The majority (88.9%) of respondents were aged 15 to 59 years, with a male-to-female ratio of 2.36:1. Car accidents caused 45.4% of tetraplegia cases, falls caused 35.9% of paraplegia cases, and myelitis was the leading cause of non-traumatic SCI. Among paraplegia participants, 65.5% had complete SCI, while 53.1% of tetraplegia participants had incomplete SCI. Functional improvement was reported by 9.58% of participants. Half (50.3%) of the respondents were unemployed, and 75% had incomes below the national average. HRQoL was significantly lower in the SCI population compared to controls, mainly influenced by injury site, income, age and etiology (p < 0.05). CONCLUSIONS: SCI participants in China exhibit low HRQoL and reemployment rates. Accessible community and vocational rehabilitation programs, alongside robust public medical services, are essential for enhancing reemployment and HRQoL among SCI participants, reducing the overall disease burden.

Systematic literature review of asthma biologic self-administration enhanced by a patient perspective.

Background: Several biologics for the treatment of severe asthma are available as self-administration devices. Objective: We performed a systematic literature review to understand the use, benefits, and challenges of these self-administration devices. Methods: Electronic databases and conference proceedings were searched using terms for asthma, biologic treatment, and at-home/self-administration (GSK study 213094). Publications were scanned for relevance using prespecified Population, Intervention, Comparison, Outcomes, Study Design (PICOS) criteria. Data on efficacy, safety, patient experience, and economic outcomes were extracted; study quality was assessed. A firsthand patient perspective was obtained. Results: Thirty-five of 504 records met the inclusion criteria. Across four phase 3 studies, ≥95% of biologic self-administrations were successful on the basis of predefined criteria. At-home self-administration was preferred over in-clinic administration by 43-96% of patients across 5 studies. Most patients (≥89%) in two phase 3 studies reported completing self-administration easily without repeated reference to instructions; high proportions of patients (≥98%) were confident in their ability to self-administer their biologic, and ≥96% rated it as extremely, very or moderately easy to self-administer. Across 16 studies reporting efficacy data, there was evidence of reduced blood eosinophil counts and improved asthma control with biologic self-administration, with improved health-related quality of life shown across 6 studies. Economic outcomes data were limited. From a patient perspective, autonomy is the major benefit of self-administration. Conclusion: Although more evidence is needed, this systematic literature review provides consistent evidence of high injection success rates and, supported by a patient perspective, preference for self-administration of biologics among patients with severe asthma.

Neuropsychological Late Effects and Quality-of-Life Outcomes in Pediatric Brain Tumor Survivors: Role of Pediatric Neurologists in Monitoring and Management.

Pediatric brain tumor (PBT) survivors are at significantly increased risk of cognitive, psychosocial, and educational/vocational sequelae that impact health-related quality of life. These complications and health morbidities result in high burden on survivors and their families, particularly those already vulnerable to disparities in health care access and outcomes. Since neurological comorbidities are common in this population, neurologists are uniquely positioned to screen, treat identified symptoms, and connect families with services and resources. A tiered assessment approach can facilitate early identification of concerns and reduce barriers to care. We review common presenting conditions, highlight risk factors, and provide screening tools and recommendations to facilitate comprehensive survivorship care for PBT survivors.

Predisposing, Enabling, and Need Factors Influencing Health-related Quality of Life Among People with Metabolic Syndrome.

INTRODUCTION: Metabolic syndrome (MetS) continues to impact the health-related quality of life (HRQoL) of patients despite various available therapeutic interventions. There is a dearth of information on how patient-centered factors holistically predict HRQoL to provide more insights on addressing MetS. OBJECTIVES: To predict the HRQoL of patients with MetS in the Southern states, using the predisposing, enabling, and need factors. METHOD: The study adopted a cross-sectional approach in collecting 706 complete surveys on HRQoL assessment using the EQ-5D-5L survey and demographic characteristics based on the predisposing, enabling, and need factors of Andersen's Behavioral model. The study focused on people with MetS in the southern states of the United States. Multinomial logistic regression was conducted to investigate the relationship between the number of comorbidities and each HRQoL dimension. Ordinal regression was used to explore factors predicting HRQoL. Sensitivity analysis was conducted using bootstrapping analysis to evaluate the regression's robustness. RESULTS: Over 70% were female and 30% had at least a bachelor's degree, while 47% were married. Most respondents (71.1%) had no problem with self-care. However, 20.0% had severe problems with pain, while the highest proportion (8.6%) was observed for extreme problems with anxiety or depression. A unit increase in comorbidities resulted in higher odds of having extreme problems with mobility (OR = 1.95), usual activities (OR = 1.73), and pain (OR = 1.70). Only 40.8% of the respondents had good HRQoL, compared to 26.2% with poor HRQoL. Age, race, geographical area, marital status, household income, number of prescription drugs, comorbidities, and body mass index were predictors of HRQoL. CONCLUSION: An increase in comorbidities significantly increased the odds of having challenges with the HRQoL dimensions. Demographic, socioeconomic, and health-related factors significantly predicted HRQoL. Therefore, healthcare providers must consider these factors as a component of patient-centered care to address health disparities and promote optimal health outcomes among people with MetS.

Telehealth Lifestyle Pilot Study for Improving Occupational Performance in Older Adults.

Occupation-centered lifestyle interventions improve health and delay age-related declines in older adults; however, little is known about the impact of a brief telehealth lifestyle program delivered individually. This pilot investigated the Holistic Occupational Performance Empowerment (HOPE) program on occupational performance and health-related quality of life. Twelve community-dwelling older adults completed six weekly lifestyle sessions to enhance behavior change toward individualized health goals. Goal Attainment Scaling (GAS) and the Short Form 20-Item Survey (SF-20) were administered preintervention and postintervention to measure program outcomes. Among 36 health-related goals, 69.4% achieved or exceeded the expected level of attainment. A paired samples t-test revealed statistically higher posttest GAS scores compared with pretest scores, indicating significant improvements in occupational performance. SF-20 mental health scores increased postintervention, although not significantly. Preliminary findings suggest that HOPE could positively impact occupational performance in community-dwelling older adults warranting a future large-scale randomized controlled trial.

Virtual Program for Improving Healthy Lifestyles in SeniorsPrevious occupational therapy (OT) programs focusing on lifestyle (e.g., physical activity, stress management) have been successful in improving the health of seniors living independently in the community; however, little is known about lifestyle programs delivered virtually (i.e., videoconferencing over the computer). This article examines the meaningful daily activities of seniors before and after participation in a 6-week virtual OT lifestyle program. Twelve seniors participated in the program which included goal setting, problem-solving, health education, and reflection. Each participant focused on three personalized goals for a healthier lifestyle throughout the program. Nearly 70% of goals achieved or exceeded the expectations of the seniors. This initial finding shows that the virtual OT lifestyle program can positively impact seniors and support healthy aging. More research is needed to determine if the results can be replicated with other seniors, including those from diverse backgrounds and living situations.

Lower Healthcare Access and Its Association With Individual Factors and Health-Related Quality of Life in Adults With Rare Diseases in Switzerland.

Objectives: This study aims to determine clusters of access to healthcare among adults with rare diseases in Switzerland, identify associated individual characteristics of access, and impact on health-related quality of life (HRQoL). Methods: Swiss adults (N = 341) diagnosed with a rare disease completed an online survey including the Perception of Access to Healthcare Questionnaire (PAHQ) and Short Form Health Survey (SF-12). We employed partition around medoids algorithm to identify patient clusters based on the PAHQ. Various sociodemographic/disease-related factors and HRQoL were assessed. Results: We identified two patient clusters: higher (n = 227) and lower access (n = 114). Significantly associated with lower access were an unstable disease course (p < 0.05), increased number of misdiagnoses (p < 0.05), and diseases affecting the nervous system (p < 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL (p < 0.05). Conclusion: Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions.

The Development and Content Validation of the Sjögren's Related Quality of Life Instrument (SRQoL).

INTRODUCTION: Several clinical outcome assessment (COA) instruments assess Sjögren's disease (Sjögren's) symptoms, but do not provide comprehensive assessment of the health-related quality of life (HRQoL) impact of Sjögren's. This study aimed to develop a patient-reported outcome (PRO) instrument for the assessment of HRQoL, intended for use in clinical trials and clinical practice in the assessment of treatment benefit. METHODS: Review of study sponsor proprietary data and qualitative interviews informed the development of a conceptual model, the Sjögren's Related Quality of Life (SRQoL) and patient global impression of severity (PGI-S) and change (PGI-C) items. Combined concept elicitation and cognitive debriefing interviews with patients with Sjögren's explored their HRQoL impact experience and content validity of the SRQoL and PGI items. RESULTS: Twenty participants were interviewed about their Sjögren's experience. Following inductive analysis of interviews, concepts were categorized into eight domains: emotional well-being (e.g., worry and stress; n = 20/20; 100%), sleep (e.g., daytime sleepiness and waking up during the night; n = 20/20; 100%), activities of daily living (e.g., difficulty looking at screens and difficulty driving; n = 20/20; 100%), cognition (e.g., concentration difficulties and word finding difficulties; n = 19/20; 95.0%), physical functioning (e.g., difficulty walking and difficulty exercising; n = 19/20; 95.0%), social and family functioning (e.g., dependent on others and relationship difficulties; n = 17/20; 85.0%), work (n = 15/20; 75.0%), and sexual functioning (n = 12/20; 60.0%). SRQoL and PGI items, instructions, response options, and recall period were well understood and relevant to participants. CONCLUSIONS: The SRQoL is a new PRO instrument to assess Sjögren's impact on HRQoL, developed in accordance with regulatory guidance. This study provides considerable insight into the patient experience of Sjögren's and evidence to support the content validity of the SRQoL. Future research should evaluate the psychometric properties of the SRQoL to support its use in clinical trials and clinical practice and further validate its use as an assessment of treatment benefit.

Patient and physician completed questionnaires used in clinical trials and clinical practice have previously focused on symptoms. These questionnaires do not cover the full experience of living with Sjögren's, such as differences in symptoms between individual patients, and their use has also been known to result in inaccurate reports. Another way of thinking about patients' experiences is to use a questionnaire to ask about the impact Sjögren's has on patients' health-related quality of life, meaning how Sjögren's might affect their life in different ways including physically, emotionally, and socially. The goal of this study was to develop a new questionnaire (named the Sjögren's-Related Quality of Life [SRQoL] questionnaire) to measure the impact that Sjögren's has on patients' lives. Interviews were conducted with people with Sjögren's to explore their understanding of the new questionnaire and how relevant the content is to their experience of the condition. The results of this study suggest that the SRQoL includes relevant and easy-to-understand questions, suitable for use in future clinical trials and clinical practice, to measure if patients' HRQoL improves with treatment. Future research is needed to confirm that the questionnaire accurately measures the impact of Sjögren's on HRQoL for use with patients with Sjögren's.

The use of health utility in cost-utility analysis: A systematic review in substance use disorders.

BACKGROUND AND AIM: We aim to identify within-trial and modelled Cost-Utility Analysis (CUA) in substance use disorders (SUD) and review the applicability assessment associated with health utility used in modelled CUA. STUDY DESIGN AND METHODS: We searched Medline, Embase, EconLit and the Pharmaceutical Benefits Advisory Committee (PBAC) databases. A global systematic literature search was undertaken to determine the CUA of SUD interventions. Key characteristics of the studies and use of health utility were described. The applicability assessment associated with health utility used in modelled CUA was reviewed using The Health Utility Application Tool (HAT). RESULTS: The final review retrieved 49 CUA (14 within-trial and 35 modelled CUA). Three major health utility measurements were used - standard gamble, EQ-5D-5L and SF-6D. EQ-5D-5L was mainly used in within-trial CUA, whereas standard gamble, EQ-5D-5L and SF-6D were equally cited in modelled CUA and within-trial CUA. Twenty-nine articles using modelled CUA citing health utilities from published literature were assessed. Only half and one-third of CUA studies described the type of quality-of-life measure and value sets used in health utility studies, respectively. Only two-thirds showed the authors addressed questions about the similarities in clinical conditions, and health state description between health utility studies and economic evaluation studies. CONCLUSION: Justifications for chosen health utilities in modelled CUA studies were mostly absent in SUD. We suggested health economists use the HAT to make judgements when assessing health utility from published estimates. The use of this tool will increase the reliability of economic evaluation carried out to assist government and policymakers in making informed decisions around health topics.

Co-Creation of Patient-Centered Metrics for Long-Term Well-Being Involving People with HIV and HIV Care Providers.

Achieving viral suppression alone does not fully resolve the multifaceted health challenges faced by people with HIV (PWH), such as early aging, multimorbidity, and low health-related quality of life. This co-creation pilot study to investigate patient-centered metrics for long-term well-being involved the development of a knowledge, attitudes, and practices survey through focus groups and its implementation among HIV care providers in Barcelona, Spain, in 2024. A collaborative approach of involving PWH from the community was essential in ensuring the relevance of the identified issues. The results underscored the importance of monitoring comorbidities such as mental health issues, cardiovascular diseases, and neurological disorders, alongside the use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The findings highlighted several barriers to implementing PROMs, including time constraints, patient health literacy, and technical issues. Overall, the study emphasizes the need for health systems in Barcelona, Spain, to integrate PROMs and PREMs into routine HIV care to enhance patient-centered care and address the comprehensive well-being of PWH.

Maladaptive eating behaviors and health-related quality of life in Spanish children.

In children, assessing health-related quality of life (HRQoL) and identifying the factors that can influence it are essential to understanding their overall health and well-being. Although eating disorders in children have been associated with reduced HRQoL, the impact of maladaptive eating behaviors, such as external eating, emotional eating and restrained eating, on children's HRQoL has not yet been prospectively explored. Therefore, the aim of this study was to determine whether external, emotional and restrained eating at baseline was associated with HRQoL in children after 14.65 months (95% CI: 14.57-14.73) of follow-up. The study involved 690 boys and 681 girls aged between 8 and 10 years, recruited from primary schools in Catalonia (Spain). To assess the relationship between external, emotional and restrained eating behaviors at baseline and HRQoL at follow-up, the Dutch Eating Behavior and KIDSCREEN-10 questionnaires were used, respectively. After adjusting for sex, age, intervention allocation group, school, maternal education, zBMI and physical activity, external and emotional eating behaviors at baseline were negatively associated with HRQoL at follow-up (p < 0.01). These associations were attenuated after final adjustment for HRQoL at baseline. Furthermore, a composite score of maladaptive eating behaviors at baseline was created by summing the individual scores for emotional, restrained and external eating behaviors. This composite score showed a significant inverse association with HRQoL at follow-up, even after adjusting for baseline HRQoL (p = 0.024). In conclusion, external and emotional eating behaviors seems to negatively affect HRQoL prospectively in Spanish children. The composite score of maladaptive eating behaviors showed a stronger inverse association with HRQoL than each eating behavior individually. TRIAL REGISTRATION NUMBER: ISRCTN registry: ISRCTN68403446; Date of registration, August 01, 2014 'Retrospectively registered'.

Oral health status of children with autism spectrum disorder in KSA: A systematic review and meta-analysis.

Background: Individuals with autism spectrum disorder (ASD) often face challenges in maintaining good oral health, because of factors including sensory sensitivities, communication difficulties, and microbial imbalances in the oral cavity. Despite growing awareness of ASD, both in Kingdom of Saudi Arabia (KSA) and globally, no systematic review has comprehensively assessed the effects of ASD on oral health status in KSA. Objective: This study was aimed at assessing whether the oral health of individuals with ASD in KSA might differ from that of neurotypical individuals, on the basis of a systematic review framework. Materials and methods: According to the Participants, Exposure, Comparison, and Outcome (PICO) framework, a systematic search of electronic databases was conducted, and screening was independently performed by two reviewers. Conflicts were resolved through discussion. Data on study characteristics and oral health findings were independently extracted by the two reviewers. The risk of bias was assessed with the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Analytical Cross-Sectional Studies. Results: Of 763 initially identified articles, 14 met the inclusion criteria. These studies indicated that children with ASD have a higher prevalence of dental caries, greater gingival inflammation, and a greater risk of dental trauma than their neurotypical peers. Parents of children with ASD showed elevated concern regarding their children's oral health. Conclusion: Training dental professionals to manage patients with ASD is essential. Further research with larger sample sizes and rigorous methods is necessary to enhance understanding of the relationship between ASD and oral health outcomes in KSA.

Psychological problems and their impact on oral mucosal disease patients' quality of life: A cross-sectional study in the Chinese population.

Objectives: We aimed to investigate the presence of common psychological factors (i.e., stress, depression, anxiety) and their impact on the Oral health-related quality of life (OHRQoL) in patients diagnosed with four oral mucosal diseases (OMDs): recurrent aphthous ulcers (RAU), oral lichen planus (OLP), oral leukoplakia (OLK), and oral submucous fibrosis (OSF). Methods: A total of 229 patients with clinically diagnosed OMDs were enrolled in this study, consisting of 55 RAU, 68 OLK, 50 OLP, and 56 OSF patients. The patients were statistically analyzed for psychological problems and OHRQoL using the Visual Analog Scale (VAS)､ the 5-item Oral Health Impact Profile (OHIP-5) and the Depression Anxiety Stress Scale-21 (DASS-21) scales. Results: There were 229 valid questionnaires collected, consisting of 83 females and 146 males with a mean age of 45.24 (SD = 11.88) years. Multiple regressions between DASS-21 scores and OHIP-5 scores revealed generally negative impacts of psychological problems on OHRQoL, with depression on OLP (ß = 0.47), OLK (ß = 0.65) and OSF (ß = 0.38), stress on RAU (ß = 0.29), OLP (ß = 0.72), OLK (ß = 0.38) and OSF (ß = 0.60), and anxiety on OLP (ß = 0.33), OLK (ß = 0.49) and OSF (ß = 0.51). Conclusions: Psychological problems like depression, stress, and anxiety were found to be prevalent in OMDs patients and adversely affected their OHRQoL. The results support the biopsychosocial medical model in the treatment of OMDs patients. Clinical significance: The present study reinforced the crucial roles of psychological factors in impacting OMDs patients' OHRQoL. Therefore, it is necessary to monitor patients' psychological status and OHRQoL using questionnaires like DASS-21 and OHIP-5. Followed by psychological interventions, the treatment is expected to be enhanced.

Including carer health-related quality of life in NICE health technology assessments in the United Kingdom.

The impact of health technologies may extend beyond the patient and affect the health of people in their network, like their informal carers. The National Institute for Health and Care Excellence (NICE) methods guide explicitly allows the inclusion of health-related quality of life (HRQoL) effects on carers in economic evaluations when these effects are substantial, but the proportion of NICE appraisals that includes carer HRQoL remains small. This paper discusses when inclusion of carer HRQoL is justified, how inclusion can be substantiated, and how carer HRQoL can be measured and included in health economic models. Inclusion of HRQoL in economic evaluations can best be substantiated by data collected in (carers for) patients eligible for receiving the intervention. To facilitate combining patient and carer utilities on the benefit side of economic evaluations, using EQ-5D to measure impacts on carers seems the most successful strategy in the UK context. Alternatives to primary data collection of EQ-5D include vignette studies, using existing values, and mapping algorithms. Carer HRQoL was most often incorporated in economic models in NICE appraisals by employing (dis)utilities as a function of the patient's health state or disease severity. For consistency and comparability, economic evaluations including carer HRQoL should present analyses with and without carer HRQoL.