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.

The impact of negative COVID-19 experiences on cancer survivors' health-related quality of life and psychological distress: a moderated mediation model.

Introduction: Cancer survivors experienced poorer health-related quality of life (HRQoL) and greater psychological distress during the COVID-19 pandemic than those without cancer. However, the underlying mechanisms that may explain how negative experiences during the pandemic are associated with distress and HRQoL remain unknown. We examined whether psychosocial risk factors (i.e., healthcare disruption, disruption to daily activities and social interaction [DDASI], and financial hardship) mediated the relationship between negative COVID-19-related experiences and cancer survivors' HRQoL and psychological distress (i.e., depressive symptoms, and anxiety) and whether the mediating effects were moderated by psychosocial protective factors (i.e., stress management ability and social support). Methods: A total of 9,651 cancer survivors completed a questionnaire assessing negative COVID-19-related experiences, psychosocial and practical experiences, and HRQoL. Conditional process analysis was used to evaluate the proposed moderated mediation models. Results: Participants had a mean age of 63.8 years (SD = 12.3) and were mostly non-Hispanic White (82.3%). DDASI and financial hardship mediated the relationship between negative COVID-19-related experiences and cancer survivor's HRQoL and psychological distress. Stress management ability buffered the indirect effect of DDASI on cancer survivors' HRQoL and psychological distress. Social support buffered the indirect effect of financial hardship on HRQoL and depressive symptoms. Conclusion: Financial resources and social interactions may buffer negative effects of major disruptions such as the COVID-19 pandemic. Future studies should assess the longitudinal impact of these associations.

Reliability and validity of a Hindi version of the Oral Health Impact Profile (OHIP-EDENT-H) for edentulous subjects: A Cross-Sectional study.

Aim: The study aimed to translate the OHIP-EDENT into Hindi and assess its validity and reliability. Methods: The study included 150 participants whose demographic information was collected using the Modified Kuppuswamy Socio-economic Scale. The Oral Health Impact Profile in Edentulous (OHIP-EDENT) was translated into Hindi using the standard forward-backward method. Test-retest reliability was assessed using the Intra-class Correlation Coefficient (ICC) and internal consistency using Cronbach's alpha. The Kaiser-Meyer-Olkin (KMO) test and Bartlett's test of sphericity coefficient were used to conduct Exploratory Factor Analysis (EFA) and confirm the Construct validity. To establish Convergent validity, the relationship between the global question and the OHIP-EDENT-H subscale scores was observed. Results: The data was analyzed with a confidence level of 95 %, and statistical significance was interpreted as a p-value of less than 0.05. The Cronbach's alpha score for OHIP-EDENT-H was 1.00, indicating high internal consistency. The corrected item-total correlations ranged from 0.665 to 0.923, and the total ICC score was 0.763, demonstrating good reliability. The subscales' intra-class correlation coefficient values ranged from 0.968 to 0.997, indicating high reliability. However, items 4, 6, 13, 17, 18, and 19 had factor loadings below the acceptable threshold of 0.40 in the factor analysis. Additionally, the total and subscale scores of the OHIP-EDENT-H showed significant correlations with global question, with correlation coefficients ranging from 0.665 to 0.923. Conclusion: The Hindi version of OHIP-EDENT is a reliable and valid tool for evaluating the OHRQoL of Hindi-speaking edentulous individuals.

[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.

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.

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.

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.

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.

Neighborhood Vulnerability and Associations with Poor Health-Related Quality-of-Life Among Adult Survivors of Childhood Cancer.

BACKGROUND: Few studies investigate the relationship between neighborhood vulnerability and health-related quality-of-life (HRQOL) in the childhood cancer population. This study evaluated the impact of neighborhood vulnerability on HRQOL among adult survivors of childhood cancer. METHODS: This cross-sectional study included 4,393 adult survivors of childhood cancer from the St Jude Lifetime Cohort Study. At the baseline (2007-2020), HRQOL was assessed using the SF36v2's physical/mental components summaries (PCS/MCS). Neighborhood vulnerability was assessed using the overall, domain, and indicator-specific scores of the Social Vulnerability Index (SVI) and Minority Health SVI (MHSVI). Multivariable logistic regression was used to evaluate associations of neighborhood vulnerability (quartiles: Q1-Q4) with impaired HRQOL (1SD below the norm), adjusting for diagnosis, demographics, personal socioeconomic status (SES), lifestyle, and chronic health condition burden. Interactions of SVI/MHSVI with personal SES on impaired HRQOL were analyzed. RESULTS: Among survivors, 51.9% were male, averaging 30.3 years of age at evaluation and 21.5 years since diagnosis. Comparing neighborhoods with higher vs lower vulnerability (Q4 vs Q1), overall (OR = 1.60, 95%CI = 1.19-2.16) and domain-specific vulnerability (socioeconomic: OR = 1.59, 95%CI = 1.18-2.15; household composition: OR = 1.54, 95%CI = 1.16-2.06; housing/transportation: OR = 1.33, 95%CI = 1.00-1.76; medical vulnerability: OR = 1.60, 95%CI = 1.22-2.09) were significantly associated with impaired PCS, but not MCS. Residing in neighborhoods lacking urgent care clinics was significantly associated with impaired PCS (OR = 1.39, 95%CI = 1.08-1.78). Having lower vs higher personal education and living in higher vulnerability neighborhoods were associated with more impaired PCS (P  interaction=0.021). CONCLUSIONS: Specific aspects of neighborhood vulnerability increase the risk for impaired physical HRQOL. Addressing these neighborhood factors is essential to enhance the HRQOL of survivors.

Sexual difficulties in men who have sex with men living with HIV: their mental health and health-related quality of life.

Background: Health-related quality of life (HRQoL) is gaining significance for people living with human immunodeficiency virus (HIV), with sexual difficulties being a crucial yet frequently neglected component of HRQoL, especially in HIV-positive men who have sex with men (MSM). Aim: The study sought to assess the levels of sexual difficulties and explore the associations between sexual difficulties, mental health, and HRQoL in HIV-positive MSM. Methods: A cohort of 475 HIV-positive MSM was studied from January 2017 to December 2021. Sociodemographic, clinical, and lifestyle data were collected. Participants were divided based on Arizona Sexual Experience Scale (ASEX) scores into 2 groups: those with sexual difficulties and a control group without difficulties. Outcomes: Psychological symptoms were evaluated by the Symptom Checklist-90 (SCL-90), HRQoL was accessed via 36-item Short Form Health Survey, and sexual function was assessed using the ASEX. We also employed path analysis to unveil latent mechanisms, alongside multivariate analysis to identify independent factors, and aimed to elucidate the interplay among sexual function, HRQoL, and mental health in HIV-positive MSM. Results: A total of 391 HIV-positive MSM were enrolled in the control group and 84 in the sexual difficulties group. The control group had significantly higher physical HRQoL (P = .004) and mental HRQoL (P = .045). In addition, SCL-90 scores were higher in the sexual difficulties group (P = .001). Multivariate analyses that indicated regular exercise (odds ratio, 0.553; P = .024) and alcohol consumption (odds ratio, 1.780; P = .033) were independent factors associated with sexual difficulties. The proportion of alcohol consumption in the sexual difficulties group was significantly higher (P = .003). ASEX scores increased gradually with increasing frequency of alcohol consumption (P = .031). Results from structural equation model showed a negative association between HRQoL and ASEX scores (ß = -0.13, P < .001) and SCL-90 scores (ß = -0.40, P < .001). Clinical Implications: HIV-positive MSM experiencing sexual difficulties exhibited lower HRQoL and worse mental health, with independent associations identified for regular exercise and alcohol consumption in relation to sexual difficulties. Strengths and Limitations: Our research has pioneered in demonstrating that HRQoL mediates the relationship between sexual difficulties and psychological symptoms among HIV-positive MSM undergoing highly active antiretroviral therapy. We found the protective factor associated with sexual difficulties was regular exercise while the risk factor was alcohol consumption. However, the data were collected only from China, and it is still unclear how HRQoL changes after intervention. Conclusion: Routine follow-up for people living with HIV should encompass an investigation into sexual function, emphasizing the need for timely assessment and intervention, particularly in HIV-positive MSM with identified risk factors.

Quality of Life Post Cervical Cancer Treatment: A Comparison Between Radical Surgery Approach and Radiotherapy and Chemotherapy.

INTRODUCTION: The assessment of quality of life (QoL) in women with cervical cancer is crucial due to the profound changes they undergo during and after treatment. Often, the significance of sexual factors is underestimated, likely due to societal taboos surrounding such discussions. OBJECTIVE: This study aimed to determine the long-term QoL outcomes, particularly focusing on sexuality, among three therapeutic approaches for cervical cancer: chemotherapy, radiotherapy, and brachytherapy; isolated hysterectomy; and hysterectomy combined with radiotherapy. METHODS: Conducted from November 2022 to July 2023, this cross-sectional study involved 131 cervical cancer patients. Their QoL was assessed using the MDASI, FACIT-Cx, and risk factor questionnaires. Results were compared across the three treatment groups, revealing notable differences. RESULTS: Patients undergoing chemo/radio/brachytherapy showed significantly lower QoL scores compared to those undergoing isolated hysterectomy. This was evident in reduced scores across FACIT-Cx subscales for physical well-being, specific concerns, and FACIT-total (p < 0.05). The MDASI results similarly indicated greater symptoms and interference in daily activities for the chemo/radio/brachytherapy group. CONCLUSION: In conclusion, isolated hysterectomy, demonstrated superior QoL outcomes compared to chemo/radio/brachytherapy. Furthermore, the study underscored the importance of addressing sexual concerns in QoL assessments of cervical cancer survivors, emphasizing the need for comprehensive care to enhance overall well-being posttreatment.

"Numbers call for action, personalized narratives provide support and recognition": a qualitative assessment of cancer patients' perspectives on patient-reported outcome measures (PROMs) feedback with narratives.

PURPOSE: Patient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients' experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format. METHODS: Cancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis. RESULTS: Twenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: "Understanding: I get the gist of it!"; "Usefulness: Tell me why I should complete PROMs"; "Format preferences: Numbers are cold, narratives are warm"; "Taking action: Can I do something about my score?"; "Personal relevance: Personalized narratives show me what life has in store for me"; and "Personal relevance: That's (not) me!" Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character. CONCLUSION: Personalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition. IMPLICATIONS FOR CANCER SURVIVORS: Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.

Review on the Burden of Episodic Migraine and Utilization of Patient Reported Outcome Measures.

PURPOSE OF REVIEW: Migraine affects a large portion of the world's population. Migraine encompasses a broad range of symptoms, with broad reaching ramifications in the form of Health-Related Quality of Life (HRQoL) factors. In our review we sought to understand the aspects encompassing the burden of disease on both an individual and population level. Furthermore, we reviewed the development and incorporation of Patient Reported Outcome Measures (PROM), questionnaires that assess HRQoL in real time, in how they have been incorporated in clinical research up to now and how they can be utilized in clinical practice moving forward. RECENT FINDINGS: It has been shown that there is much heterogeneity within the field in PROM development processes as well as their utilization in episodic migraine (EM) clinical trials. Furthermore, they are inconsistently used in clinical practice. Among the most commonly used PROMs, the MSQv2.1 is among the most valid and reliable. Beyond that, it also shows promise to help in guidance of clinical management of migraine.

Effectiveness of integrated care models for stroke patients: A systematic review and meta-analysis.

INTRODUCTION: Given that stroke is a leading cause of disability and mortality worldwide, there is an urgent need for a coordinated healthcare approach to mitigate its effects. The objectives of this study were to perform a systematic review and meta-analysis of stroke integrated care models and develop recommendations for a representative model. DESIGN: A systematic review and meta-analysis. METHODS: The literature search identified randomized controlled trials comparing integrated care models with standard care for stroke patients. The included studies followed PICOs inclusion criteria. The qualitative analysis included creating a flowchart for the literature screening process, and tables detailing the basic characteristics of the included studies, the adherence to the ten principles and the results of the quality assessments. Subsequently, quantitative meta-analytical procedures were conducted to statistically pool the data and quantify the effects of the integrated care models on stroke patients' health-related quality of life, activities of daily living, and depression. The China National Knowledge Infrastructure (CNKI), Wanfang Data, Chongqing VIP Chinese Science and Technology Periodical Database (VIP), China Biology Medicine Disc (CBMDISC), Cochrane Library, Cumulated Index to Nursing and Allied Health Literature (CINAHL), PubMed, Web of Science, Embase, Google Scholar, and Clinical Trials were searched from inception to March 13, 2024. RESULTS: Of the 2547 obtained articles, 19 were systematically reviewed and 15 were included in the meta-analysis. The integrated care models enhanced stroke patients' health-related quality of life, ability to perform activities of daily living, and reduced depression. Adherence to the 10 principles varied: comprehensive services, patient focus, and standardized care delivery had strong implementation, while gaps were noted in geographic coverage, information systems, governance structures, and financial management. CONCLUSION: Integrated care models improve outcomes for stroke patients and adherence to the 10 principles is vital for their implementation success. This study's findings call for a more standardized approach to implementing integrated care models, emphasizing the need for integrated services, patient-centred care, and interdisciplinary collaboration, while also addressing the identified gaps in terms of integration efforts. CLINICAL RELEVANCE: This study provides evidence-based recommendations on the most effective integrated care approaches for stroke patients, potentially leading to better patient outcomes, reduced healthcare costs, and improved quality of life.

The Correlation Between Body Mass Index and Health-Related Quality of Life: Data from Two Weight Loss Intervention Studies.

INTRODUCTION: The correlation between body mass index (BMI) and utility in participants with obesity was assessed using health-related quality-of-life data collected in two weight loss intervention studies, SCALE and STEP 1. METHODS: Short Form Health Survey 36-Item (SF-36) scores from SCALE and STEP 1 were mapped to EuroQoL-5 dimensions-3 levels (EQ-5D-3L) using an established algorithm to derive utilities for the UK. SF-36 scores from STEP 1 were converted into Short Form 6 dimension (SF-6D) utilities for Portugal using the tool developed by the University of Sheffield. The correlation between baseline BMI and utility was assessed by multiple linear regression analyses, controlling for demographic and clinical parameters. RESULTS: A higher baseline BMI correlated with lower EQ-5D-3L and SF-6D utilities, although the trend was non-significant. Assuming linearity between BMI ranges 30-40 kg/m2, an additional unit of BMI correlated with 0.0041 and 0.0031 lower EQ-5D-3L scores in SCALE and 0.0039 and 0.0047 lower EQ-5D-3L and 0.0027 and 0.0020 lower SF-6D scores in STEP 1 for men and women, respectively. CONCLUSION: In individuals with comparable demographic characteristics and weight-related comorbidities, a 1 unit change in BMI leads to a difference of up to 0.005 in utility indices. TRIAL REGISTRATION: ClinicalTrials.gov identifiers: SCALE (NCT01272219) and STEP 1 (NCT03548935).

Cost-effectiveness analyses compare health benefits and costs between treatments to inform decisions on healthcare resource allocation. Health benefits are typically quantified as quality-adjusted life-years (QALYs) gained. The calculation of QALYs relies on health-related quality-of-life (HRQoL) data, which are collected from participants. However, to allow comparisons across multiple interventions and diseases, HRQoL needs to be converted into a standardized, generic measure, i.e., a utility index ranging from 0 (equivalent to death) to 1 (perfect health). In this study, HRQoL data from the SCALE and STEP 1 clinical trials were converted into utility indexes and analyzed against participants' weight at study start, expressed as body mass index (BMI, kg/m²). Our study indicates that there is a negative correlation between BMI and health utility at a population level whereby an additional unit of BMI, within the range of 30­40 kg/m², was consistently correlated with an up to 0.005 worsening in the utility index across men and women. The estimated effect size was small, indicating that BMI alone may not explain the differences in participants' HRQoL and general population evaluation of these.

Quality of life impacts associated with comorbid insomnia and depression in adult population.

PURPOSE: Health-related quality of life (HRQoL) impacts of insomnia and depression (as separated entities) have been well investigated in previous studies. However, little is known about the effect of comorbid insomnia and depression on HRQoL. This study aimed to assess the impacts of insomnia and depression, in combination or alone, on HRQoL in Australian adults. METHODS: Data used in this study were obtained from the large-scale longitudinal Household, Income and Labour Dynamics in Australia (HILDA) survey. Insomnia was defined using key insomnia criteria of DSM-V. Depression was based on validated cut-off points of the Mental Health Inventory-5 (MHI-5) (scores ≤ 62) in the base case analysis. HRQoL expressed as utility scores (ranging from 0 to 1) were measured using the Short-Form 6-Dimension (SF-6D) converted from the SF-36 and valued using an Australian scoring algorithm. Multi-level modelling was applied to assess the effect of insomnia and/or depression on utility scores. RESULTS: The study analysed 30,972 observations from 10,324 individuals (age [mean ± SD]: 45.7 ± 16.5, female: 54.6%). The proportion of individuals with insomnia only, depression only, and comorbid insomnia and depression was 11.3%, 11.6%, and 8.2%, respectively. The interaction effect suggested the combined impact of insomnia and depression on health-related quality of life beyond the sum of their individual effects. Marginal mean difference in utility scores for insomnia only, depression only, and the comorbidity relative to no insomnia or depression was -0.058 (SE: 0.003, Cohen's d: 0.420, small effect), -0.210 (SE: 0.003, Cohen's d: 1.530, large effect), and -0.291 (SE: 0.004, Cohen's d: 2.120, large effect), respectively. CONCLUSION: Comorbid depression and insomnia appear to have very large quality-of-life impacts. Furthermore, this is the first study that has estimated the magnitude of the impact of comorbid insomnia and depression on utility scores which can be utilised in future clinical or economic studies.

Insomnia and depression often occur together and have an evidence-based bidirectional relationship. The impairment of health-related quality of life (HRQoL) associated with insomnia or depression, as an individual effect, has been previously examined by several studies. However, the reduction in HRQoL associated with comorbid insomnia and depression has been understudied. With the use of representative longitudinal data containing a large sample size of 10,324 Australian adults, we found that insomnia and depression were associated with statistically significant reductions in health-related quality of life, whether occurring individually or concurrently. The effect of comorbid insomnia and depression on quality of life was significantly larger than the summative effect of insomnia and depression. This study provides new insights into the quality-of-life burden of insomnia and/or depression and emphasises the importance of addressing insomnia in adults with depression.

Rib-on-pelvis deformity: a modifiable driver of pain and poor health-related quality of life in cerebral palsy.

PURPOSE: Cerebral Palsy (CP) often presents with a sweeping thoracolumbar scoliosis and pelvic obliquity. With severe pelvic obliquity, the ribs come into contact with the high side of the oblique pelvis, termed rib-on-pelvis deformity (ROP). ROP can result in costo-iliac impingement, or pain associated with ROP, and can also adversely affect breathing and sitting balance. The goal of this study was to evaluate whether CP patients with ROP have worse health-related quality of life (HRQOL) before surgery and a greater improvement in HRQOL after surgery. METHODS: A retrospective analysis of a prospectively collected, multicenter, international registry was performed for all nonambulatory patients with CP treated with spinal fusion with at least two-year follow-up. HRQOL was measured via the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire domains (0 = most disability, 100 = least disability). ROP was defined as having a rib distal to the superior portion of the iliac crest on preop upright radiographs. The ROP group and control group without ROP were compared regarding six domain scores and total score of CPCHILD. Multiple linear regression was used to control for curve apex location, major coronal Cobb angle, type of tone, and pelvic obliquity. RESULTS: 340 patients met inclusion criteria (52% female, mean age 14.0 years). The mean major coronal Cobb angle was 81 degrees and mean pelvic obliquity was 22 degrees. 176 patients (51.8%) had ROP while 164 patients (48.2%) did not. ROP was independently associated with worse preoperative Positioning/Transfers/Mobility (PTM), Comfort & Emotions (C&E), and total CPCHILD score via the CPCHILD questionnaire (p < 0.05). Patients with preoperative ROP experienced a greater improvement in the C&E and PTM domains as well as total CPCHILD score than patients without ROP (p < 0.05). CONCLUSION: CP patients with rib-on-pelvis deformity experience more pain and worse HRQOL than patients without this deformity. These patients experienced a greater improvement in HRQOL after spinal fusion measured via the CPCHILD questionnaire.

Accelerometer-Based Physical Activity and Health-Related Quality of Life in Korean Adults: Observational Study Using the Korea National Health and Nutrition Examination Survey.

BACKGROUND: Health-related quality of life (HRQoL) reflects an individual's perception of their physical and mental health over time. Despite numerous studies linking physical activity to improved HRQoL, most rely on self-reported data, limiting the accuracy and generalizability of findings. This study leverages objective accelerometer data to explore the association between physical activity and HRQoL in Korean adults. OBJECTIVE: The objective of this study is to analyze the relationship between objectively measured physical activity using accelerometers and HRQoL among Korean adults, aiming to inform targeted interventions for enhancing HRQoL through physical activity. METHODS: This observational study included 1298 participants aged 19-64 years from the Korea National Health and Nutrition Examination Survey (KNHANES) VI, who wore an accelerometer for 7 consecutive days. HRQoL was assessed using the EQ-5D questionnaire, and physical activity was quantified as moderate-to-vigorous physical activity accelerometer-total (MVPA-AT) and accelerometer-bout (MVPA-AB). Data were analyzed using logistic regression to determine the odds ratio (ORs) for low HRQoL, adjusting for socioeconomic variables and mental health factors. RESULTS: Participants with higher HRQoL were younger, more likely to be male, single, highly educated, employed in white-collar jobs, and had higher household incomes. They also reported less stress and better subjective health status. The high HRQoL group had significantly more participants meeting MVPA-AB ≥600 metabolic equivalents (P<.01). Logistic regression showed that participants meeting MVPA-AB ≥600 metabolic equivalents had higher odds of high HRQoL (OR 1.55, 95% CI 1.11-2.17). Adjusted models showed consistent results, although the association weakened when adjusting for mental health factors (OR 1.45, 95% CI 1.01-2.09). CONCLUSIONS: The study demonstrates a significant association between HRQoL and moderate to vigorous physical activity sustained for at least 10 minutes, as measured by accelerometer. These findings support promoting physical activity, particularly sustained moderate to vigorous activity, to enhance HRQoL. Further interventional studies focusing on specific physical activity domains such as occupational, leisure-time, and commuting activities are warranted.