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Abstract Background Experiencing a loved one's stay in the intensive care unit (ICU) can profoundly affect families, often leading to post-intensive care syndrome-family (PICS-F), a condition particularly exacerbated during the COVID-19 pandemic. While PICS-F significantly impacts the mental health of families of ICU patients, especially in the context of COVID-19, the long-term effects beyond 12 months remain understudied. This study aims to explore the prevalence of PTSD-related symptoms and health-related quality of life (HRQOL) in family members up to 18 months after ICU discharge. Methods This prospective study, conducted in a tertiary university hospital in Tokyo, enrolled family members of severe COVID-19 ICU patients (July 2020 to June 2022 with final follow-up ending in December 2023). The primary outcome was family member symptoms of PTSD at 6, 12 and 18 months after ICU discharge, measured by the Impact of Events Scale-Revised (presence of PTSD symptoms defined by score > 24). Secondary outcomes were family member symptoms of anxiety and depression, sleep disorders, and health-related quality of life (HRQOL) at the same timepoint. Results Among 97 enrolled family members, 68 participated. At least one PTSD-related symptom was reported by 26% of family members, persisting over 18 months post-discharge (16% at 6 months, 23% at 12 months, and 25% at 18 months). A subgroup (15%) exhibited delayed-onset PTSD symptoms. Family members with PTSD-related symptoms reported lower HRQOL, especially in mental and social components. Conclusions The study underscores the importance of long-term support for family members post-ICU discharge, given the sustained prevalence of PTSD-related symptoms among family members of severe COVID-19 patients.

Purpose: This study aims to identify the key factors influencing health-related quality of life (HRQoL) of pediatric acute myeloid leukemia (AML) patients following their initial diagnosis and examine their impact on the five-year survival prognosis. Methods: A chart review and follow-up were conducted for children with AML who participated in a prospective cohort study between 2017 and 2020. We identified factors influencing HRQoL through Pediatric Quality of Life Inventory™ (PedsQL™ 4.0), PedsQL™ Cancer Module 3.0 (CM 3.0) and PedsQL™ Family Impact Module 2.0 (FIM 2.0), as well as assessed the impact of impaired HRQoL on the overall outcomes of patients. Results: Sixty-four subjects enrolled in the study had complete HRQoL outcome data, and 61 of them completed the 5-year follow-up. In CM 3.0, age was positively associated with parental proxy reports (p = 0.040), whereas divorced families were negatively associated with child self-reports (p = 0.045). A positive medical history correlates with FIM 2.0 (p = 0.025). Residence (p = 0.046), the occupation of caregivers (p = 0.014), disease severity (p = 0.024), and the only child (p = 0.029) exhibited statistically significant associations with the impairment of HRQoL. Impaired HRQoL scores shown by the PedsQL™4.0 parent proxy report (p = 0.013) and FIM 2.0 (p = 0.011) were associated with a reduced 5-year survival rate. Conclusions: This study demonstrated that early impairment of HRQoL in pediatric acute myeloid leukemia patients has predictive value for long-term prognosis. Once validated, these findings may provide some guidance to clinicians treating children with AML.

Abstract Background Osteoarthritis (OA) represents a leading cause of disability with limited data available for the Greek patients. Objectives To evaluate the impact of moderate to severe symptomatic hip/knee OA under treatment on physical performance and quality of life. Methods A non-interventional, cross-sectional, epidemiological study of patients with moderate/severe OA, recruited in a single visit from 9 expert sites in Athens, Greece. Assessments were based on commonly used outcome scales: the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee Injury and Osteoarthritis Outcome Score (KOOS) and the EuroQol-5-Dimensions 3-levels questionnaire (EQ-5D-3L). Results One hundred sixty-four patients were included in the analysis. Most of the patients were females (78.7%), with a mean age of 70.5 ± 10.2 years. Comorbidities were reported by 87.2% of patients with hypertension being the most frequently reported (53.7%), followed by dyslipidemia (31.1%), obesity (24.4%) and diabetes mellitus (23.2%). Paracetamol was the most common treatment (96%), followed by NSAIDs (75%), opioids (50%) and locally applied medications (42.7%). Both hip and knee OA patients showed substantial deterioration in health-related quality of life (QoL) and health status as reflected by the HOOS/KOOS (Function in sport and recreation was the most impaired subscale, followed by Hip- or Knee-related QoL). The mean EQ-5D-3L index score was 0.396 ± 0.319 and the mean EQ-VAS score was 52.1 ± 1.9. When compared indirectly to the local population norms our OA population had worse QoL indices. Conclusion Our findings suggest the functional disability and impaired QoL of Greek patients with moderate/severe hip/knee OA under treatment emphasizing the need for novel treatments that will reduce the burden of the disease.

Aims To determine the predictability of the MARKO questionnaire and/or its domains, individually or in combination with other markers and characteristics (age, gender, smoking history, lung function, 6-min walk test (6 MWT), exhaled breath temperature (EBT), and hsCRP for the incident chronic obstructive pulmonary disease (COPD) in subjects at risk over 2 years follow-up period). Participants and Methods Patients, smokers/ex-smokers with >20 pack-years, aged 40–65 years of both sexes were recruited and followed for 2 years. After recruitment and signing the informed consent at the GP, a detailed diagnostic workout was done by the pulmonologist; they completed three self-assessment questionnaires—MARKO, SGRQ and CAT, detailed history and physical, laboratory (CBC, hsCRP), lung function tests with bronchodilator and EBT. At the 2 year follow-up visit they performed: the same three self-assessment questionnaires, history and physical, lung function tests and EBT. Results A sample of 320 subjects (41.9% male), mean (SD) age 51.9 (7.4) years with 36.4 (17.4) pack-years of smoking was reassessed after 2.1 years. Exploratory factor analysis of MARKO questionnaire isolated three distinct domains (breathlessness and fatigue, “exacerbations”, cough and expectorations). We have determined a rate for incident COPD that was 4.911/100 person-years (95% CI [3.436–6.816]). We found out that questions about breathlessness and “exacerbations”, and male sex were predictive of incident COPD after two years follow-up (AUC 0.79, 95% CI [0.74–0.84], p < 0.001). When only active smokers were analyzed a change in EBT after a cigarette (ΔEBT) was added to a previous model (AUC 0.83, 95% CI [0.78–0.88], p < 0.001). Conclusion Our preliminary data shows that the MARKO questionnaire combined with EBT (change after a cigarette smoke) could potentially serve as early markers of future COPD in smokers.

Abstract Background Individuals with low socioeconomic status experience higher prevalence and worse outcomes of chronic obstructive pulmonary disease (COPD). We undertook a quality improvement initiative at our safety net hospital in which a nurse practitioner (NP)/community health worker (CHW) team followed patients with COPD, frequent admissions, and unmet SDOH needs from hospitalization through one month post-discharge. We report our mixed methods approach to inform development and preliminary evaluation of this intervention. Methods We first assessed characteristics of patients admitted with COPD in 2018 (n = 1811), performing multivariable logistic regression to identify factors associated with ≥ 2 admissions per year. We then tested a standardized tool to screen for unmet SDOH needs in a convenience sample of 51 frequently hospitalized patients with COPD. From January–July 2019, we pilot tested the NP/CHW intervention with 57 patients, reviewed NP/CHW logs, and conducted qualitative interviews with 16 patient participants to explore impressions of the intervention. Results Patients with Medicaid insurance, mental health disorders, cardiac disease, and substance use disorder had increased odds of having ≥ 2 admissions. COPD severity, comorbidities, and unmet SDOH needs made COPD self-management challenging. Seventy-four percent of frequently admitted patients with COPD completing SDOH screening had unmet SDOH needs. Patients perceived that the NP/CHW intervention addressed these barriers by connecting them to resources and providing emotional support. Conclusions Many patients with COPD admitted at our safety-net hospital experience unmet SDOH needs that impede COPD self-management. A longitudinal NP/CHW intervention to address unmet SDOH needs following discharge appears feasible and acceptable.

Abstract Background Menstrual symptoms have been identified as a substantial burden among women of reproductive age, affecting their health status and quality of life globally. A range of menstrual symptoms have been studied as they affect the health-related quality of life (HRQoL), showing variations across specific menstrual symptoms and study settings. A major concern is demonstrated due to menstrual symptoms in women’s professional and social life, and consequently societal and economic loss for women and the society at large. Yet evidence is scarce that estimates the index form HRQoL score related to menstrual symptoms that is needed for health economic evaluations. Methods This study aims to investigate the association between menstrual symptoms and the HRQoL among working women in Japan in an index form, using a self-reporting questionnaire (n = 6048). The EQ-5D-3L (EuroQoL 5-dimension 3-level) is used that is a widely used tool to measure health outcomes for health economic evaluations globally. Multivariate regression analysis is conducted to assess the association between the HRQoL score and specific nineteen physical and mental conditions related to menstruation (e.g., pain, heavy bleeding, concentration, negative affect). Results The index form HRQoL score for menstrual symptoms is estimated as 0.682 in the study population (where a score one suggests perfect health). The association of the HRQoL score varies substantially across the menstrual symptoms. Several of the physical conditions and disorders show a substantial negative association with the HRQoL score. Also, most of the mental and psychological issues are significantly and negatively related to the HRQoL score. Conclusions This study suggests that HRQoL is substantially and negatively affected by menstruation among working women in Japan. Distinct variations of negative influences across menstrual symptoms underscore the multi-dimensional nature of menstruation and consequently the need of collective interventions to address these difficulties. The evidence of HRQoL continues to be an important area for future research on women’s health and health economic evaluations to inform effective and efficient resource allocations for relevant health policies and financing strategies.

Abstract Background When curative treatments are no longer available for cancer patients, the aim of treatment is palliative. The emphasis of palliative care is on optimizing quality of life and provided support for patients nearing end of life. However, chemotherapy is often offered as a palliative therapy for patients with advanced cancer nearing death. The purpose of this review was to evaluate the state of the science relative to use of palliative chemotherapy and maintenance of quality of life in patients with advanced cancer who were at end of life. Materials and methods Published research from January 2010 to December 2019 was reviewed using PRISMA guidelines using PubMed, Proquest, ISI web of science, Science Direct, and Scopus databases. MeSH keywords including quality of life, health related quality of life, cancer chemotherapy, drug therapy, end of life care, palliative care, palliative therapy, and palliative treatment. Findings 13 studies were evaluated based on inclusion criteria. Most of these studies identified that reduced quality of life was associated with receipt of palliative chemotherapy in patients with advanced cancer at the end of life. Conclusion Studies have primarily been conducted in European and American countries. Cultural background of patients may impact quality of life at end of life. More research is needed in developing countries including Mideastern and Asian countries.

Oral cancer is the second most common disease affecting Indian population. Though better surgical, reconstruction and effective chemo/radiation protocols available these days improving the disease related outcomes, the debilitating effect of such therapeutic intervention on long term has negative impact on the quality of life of such patients. It has been drastically affected in many ways such as pain, disfigurement, social activity, health and functional impairment of speech and deglutition. For these reasons, the measurements of quality of life of patients are emerging trend nowadays. This study aims to evaluate the health related quality of life of patients affected with oral cancer and treated by surgery.

Abstract Background Health-related quality of life (HRQoL) has been brought up for decades in haemophilia patients. However, no data to date are available about HRQoL in children with haemophilia using long-term follow up data. This nearly 4-year follow-up study aimed to assess the long-term HRQoL of haemophilia children. Methods A prospective cohort study among 42 children with haemophilia and their parents was conducted in August 2014 in a children’s hospital; follow-up was completed in January 2018. Primary endpoint was the change in patient HRQoL evaluated by Canadian Haemophilia Outcomes–Kids’ Life Assessment Tool (CHO-KLAT) from baseline to year 4; secondary endpoint was the impact of bleeding rates, physical activity restriction, financial burden and treatment (prophylaxis vs on-demand treatment) on HRQoL, as well as the impact of treatment on event-free survival. Results Totally 42 patients (mean age, 5.48[SD, 4.63] years) and 42 parents were included. 38 families completed 4-year follow up. Patients reported a small increase in HRQoL from baseline to year 4. The mean scores of child self-report and parent proxy report of CHO-KLAT at baseline were 60.69 (SD = 20.28) and 61.01 (SD = 12.14), respectively. Scores at follow-up were 64.69 (SD = 13.71) and 65.33 (SD = 15.78), respectively. Haemophilia patients without physical activity restriction, living in urban areas, and receiving prophylactic treatment and home injection, had higher average values for HRQoL scores than the others. Bleeding rates were proportionally negatively correlated with HRQoL. Patients who had received prophylactic treatment had better event-free survival. Conclusions Haemophilia decreased HRQoL of patients, but this effect weakened after 4 years. HRQoL of children is influenced by severity of haemophilia, bleeding rates, physical activity restriction, financial burden and treatment. Prophylactic treatment is a key factor contributing to event-free survivor prognosis and the optimal form of therapy for childhood haemophilia.

Background: The world is currently undergoing a pandemic, caused by the SARS-CoV-2 virus (COVID-19). According to the World Health Organization, patients with chronic illnesses appear to be at the highest risk for COVID-19 associated sequelae. Inability to participate in outpatient-based rehabilitation programs and being home-bound can increase the risk for and potential worsening of chronic health conditions. This study evaluated the short-term effects of telerehabilitation on patients’ walk test performance and health related quality of life (HRQoL). Methods: 47 patients (23 cardiovascular, 15 pulmonary, 9 oncology) participated in the telerehabilitation program. At baseline and following a 1-month intervention, patients had their 6-minute walk test distance (6MWTD) and HRQoL assessed. Average daily step counts were measured by the PACER App. Conclusion: Our results indicate that a short-term, supervised virtual telerehabilitation program had significant positive effects on 6MWTD and HRQoL in cardiac, pulmonary and oncology patients during COVID-19.

Abstract Background Obesity is an emerging global public health concern as it is related to chronic diseases and its impact to health related quality of life. The aim of this study was to assess the effect of weight reduction on health related quality of life (HRQOL) among obese and overweight housewives. Methods Data on 123 obese and overweight housewives in the intervention group from the MyBFF@home study were utilised. A validated Malaysian Malay version of Obesity Weight Loss Quality of Life (OWLQOL) questionnaire was administered at baseline and 6 months after intervention. Descriptive analysis, univariate analysis, paired t-test and multiple logistic regression were performed using SPSS Version 22. Results Mean body mass index (BMI) was 31.5 kg/m2 (SD:4.13), with 51 participants classified as overweight (41.5%) while 72 were obese (58.5%). About 72% of the housewives experienced weight reduction (62% reduced weight less than 5% and 11% reduced weight more than 5% of their baseline weight). There was a significant improvement in HRQOL with a pre-intervention total mean score of 59.82 (SD: 26.60) and post-intervention of 66.13 (SD: 22.82), p-value

Peter K Aalund, Eva N Glassou, Torben B Hansen University Clinic for Hand, Hip and Knee Surgery, Regional Hospital West Jutland, Aarhus University, Holstebro, Denmark Background: Total hip arthroplasty (THA) is a common surgical procedure and approximately 9,500 of these surgeries are performed annually in Denmark. The operation is considered effective and successful with respect to complications, mortality, and implant survival. However, using patient-reported outcome measures, up to 10% of patients are not satisfied with the outcome of their operation. To address this, it is important to find out why some patients experience impaired outcomes after THA. The purpose of this study was to investigate the impact of age and preoperative health-related quality of life (HRQoL) on improvements in HRQoL after THA.Methods: A cohort study was conducted with follow-up at 3 and 12 months. Patients were included from September 2008 to December 2013. We analyzed 1,283 THA cases. HRQoL was measured using the EuroQol-5 Domain. Analyses were carried out with multiple linear regression and adjusted for relevant variables available in the data set.Results: A significant positive association was found between age and HRQoL outcomes for patients who underwent THA at both 3 (β [regression coefficient] 0.0026, confidence interval [CI] 0.0013; 0.0039, p

The article investigates the value of canagliflozin in the management of type 2 diabetes mellitus from the perspective of a clinically-based patient-centred approach. It focusses on the outcomes of a 52-week double-blind, active-controlled study. The results of this clinical trial demonstrate that canagliflozin, which provides significant weight loss ability, improves the quality of life and satisfaction with physical and emotional health in patients with diabetes compared with sitagliptin.

Reimbursement decisions on new oncology drugs are now often made while uncertainty remains about a drug's risk–benefit profile. One consequence of this is a delay in patient access to valuable new medicines. We share our perspectives on strategies to mitigate sources of uncertainty in the health technology assessment process. These include flexible approaches for evaluating the additional benefit, such as better use of surrogate endpoints and health-related quality of life data, and renewed research efforts to define the optimal target population and generate real-world evidence post-authorisation.

Background: β-Thalassemia is a prevalent genetic disease in Mediterranean countries. The most common treatments for this disease are blood transfusion plus iron chelation (BTIC) therapy and bone marrow transplantation (BMT). Patients using these procedures experience different health-related quality of life (HRQoL). The purpose of the present study was to measure HRQoL in these patients using 2 different multiattribute quality of life (QoL) scales. Methods: In this cross-sectional study, data were gathered using 3 instruments: a socio-demographic questionnaire, EQ-5D, and SF-36. A total of 196 patients with β-thalassemia were randomly selected from 2 hospitals in Shiraz (Southern Iran). Data were analyzed using logistic regression and multiple regression models to identify factors that affect the patients’ HRQoL. Results: The average EQ-5D index and EQ visual analog scale (VAS) scores were 0.86 (95% CI: 0.83–0.89) and 71.85 (95% CI: 69.13–74.58), respectively. Patients with BMT reported significantly higher EQ VAS scores (83.27 vs 68.55, respectively). The results showed that patients who lived in rural area and patients with BMT reported higher EQ VAS scores (rural; β=10.25, P=.006 and BMT; β=11.88, P=.000). As well, SF-36 between 2 groups of patients were statistically significant in physical component scale (PCS). Conclusion: Patients in the BMT group experienced higher HRQoL in both physical and mental aspects compared to those in the BTIC group. More studies are needed to assess the relative cost-effectiveness of these methods in developing countries.

El estado de bienestar en que vivimos en los países desarrollados hace que surja la necesidad de buscar herramientas que sean una imagen fiel del estado de salud de la población como es la medición de la calidad de vida relacionada con la salud. El objetivo de nuestro estudio es conocer la calidad de vida relacionada con la salud (CVRS) de los trabajadores sanitarios como medida de su estado de salud. Para ello hemos realizado un estudio transversal, prospectivo y descriptivo de una muestra de 542 trabajadores seleccionada por muestreo sistemático. Como variable dependiente se evaluó la CVRS a través del cuestionario SF-36. Este cuestionario evalúa el estado de salud a través de 7 escalas (Función física, rol físico, salud general, vitalidad, función social, rol emocional y salud mental) valoradas de 0 a 100 (siendo 100 el mejor valor) y de dos dominios globales estandarizados para población general siendo su valor 50, (índice general de salud física e índice general de salud mental). Se tiene en cuenta la edad y el sexo para el análisis de los resultados. Los resultados más relevantes obtenidos son: Edad media 46 años (DE 10,4), 82% mujeres. Función física: 88.7 (Población general-PG-: 84.7); Rol físico: 86.5 (PG: 83.2); Dolor: 71.9 (PG: 79); Salud general: 70 (PG: 68.3); Vitalidad: 66.1 (PG: 66.9); Función social: 86.4 (PG: 90.1); Rol emocional: 87.8 (PG: 88.6); Salud mental: 72.6 (PG: 73). Índice global de salud física: 51.9; Índice global de salud mental: 49.8. Los valores encontrados tanto para las escalas de salud física como mental son ligeramente mejores que los establecidos para la población general para el mismo rango de edad y sexo, salvo en la escala de dolor.The welfare state in whom we live in the developed countries does that there arises the need to look for tools that are a faithful image of the health of the population such as it is the measurement of the quality of life related to the health. The aim of our study is to know the health related quality of life (HRQOL) of the sanitary workers as measure of their health status. For it we have realized a cross-sectional, prospective and descriptive study of a sample of 542 workers selected by systematic sampling. The dependent variable was assessed HRQOL by the SF-36. This questionnaire assesses the health status across 7 scales (physical function, role physical, general health, vitality, social function, emotional role and mental health) from 0 to 100 (100 being the best value) and two global domains standardized for general population value being 50, (general index of physical health, and general index of mental health). It takes into account the age and the sex for the analysis of the results. The most important results obtained are: Middle Age 46 years (SD 10,4), 82 % women. Physical function: 88.7 (PG-general population: 84.7), role physical, 86.5 (PG: 83.2); Pain 71.9 (PG 79), general health: 70 (PG: 68.3); Vitality: 66.1 (PG: 66.9 ), social function: 86.4 (PG: 90.1), Role emotional 87.8 (PG: 88.6); Mental Health: 72.6 (PG 73). Global index of physical health: 51.9; global Index of mental health: 49.8. The values found so much for the scales of physical as mental health are lightly better than the established ones for the general population for the same range of age and sex, except in the scale of pain.

The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp-12) is a 12-item questionnaire that measures spiritual well-being in people with cancer and other chronic illnesses. Cancer patients, psychotherapists, and religious/spiritual experts provided input on the development of the items. It was validated with a large, ethnically diverse sample. It has been successfully used to assess spiritual well-being across a wide range of religious traditions, including those who identify themselves as “spiritual yet not religious.” Part of the larger FACIT measurement system that assesses multidimensional health related quality of life (HRQOL), the FACIT-Sp-12 has been translated and linguistically validated in 15 languages and has been used in dozens of studies examining the relationships among spiritual well-being, health, and adjustment to illness.