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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. [ABSTRACT FROM AUTHOR]

Introduction: Recurrent respiratory papillomatosis (RRP) is a chronic disease caused by human papillomavirus (HPV), characterized by recurrent papillomas in the respiratory tract. Presenting as either juvenile-onset RRP (JoRRP) or adult-onset RRP (AoRRP), the severity of the disease is subjective and unpredictable. Lack of curative therapies necessitates disease management involving repeated surgical removal of lesions. The review aimed to assess the clinical, humanistic and economic burden associated with RRP. Methods: Systematic literature reviews of Embase®, MEDLINE® and Cochrane databases were conducted for epidemiology, clinical, humanistic, and economic burden, from database inception to November 30, 2022. Conference abstracts were also searched (2019–2022). Key inclusion criteria consisted of juveniles or adults with RRP/laryngeal papillomatosis, with no restriction on study country, interventions, or comparators. Outcomes of interest included incidence, prevalence, risk factors, symptomatic presentation, HPV genotype, cost burden, resource use and health related quality of life (HRQoL). Results: In JoRRP, the incidence rate ranged from 0.2–2.1 per 100,000 and the prevalence rate ranged from 0.8–4.3 per 100,000. Incidence and prevalence of AoRRP were 0.2–3.9 and 0.4–8.4 per 100,000, respectively. Limited studies reported the subsequent impact of introducing national prophylactic HPV immunisation programs on JoRRP epidemiology, but where available, they were associated with significantly reduced incidence rates. Symptomatic presentations were diverse, with voice impact and breathing difficulties commonly reported. More aggressive disease was linked to earlier age of onset and HPV11 genotype. Healthcare utilisation was largely driven by surgical interventions, due to lack of curative treatments. Cost burden was substantial, with JoRRP associated with triple the costs of AoRRP in the US. Patients with JoRRP and AoRRP experienced considerable HRQoL impairment, particularly relating to voice disorder. Conclusion: Extensive clinical, humanistic and economic disease burden was reported for both JoRRP and AoRRP, as it is a chronic condition, with propensity to recur and spread. Feasibility of improving HPV prophylactic vaccination coverage against HPV6/HPV11 should be explored to reduce incidence, alongside efforts to improve treatment of JoRRP and AoRRP patients. Despite the existing literature, RRP remains a poorly understood disease, and future research on risk factors and medical options are needed. [ABSTRACT FROM AUTHOR]

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.

Objective: To emphasize the necessity for increased research in this field, incorporating depression into the preventative, diagnostic, and therapeutic considerations for asthma. Additionally, we seek to highlight upcoming advancements that can be applied to simultaneously address these comorbidities, ultimately improving the overall well-being and quality of life for individuals coping with these conditions. Methods: A rigorous search in PubMed using the MeSH terms "asthma" and "depression" was performed, and papers were screened by the authors in view of their eligibility to contribute to the study. Results: There exists a correlation between these two conditions, with specific biological mechanisms and genetic factors playing a crucial role in their concurrent occurrence. In this review, we present preclinical and clinical research data, shed light on the possible mechanisms contributing to the co-occurrence of symptoms associated with both asthma and depression, and explore the intricate relationship between both conditions. Conclusion: The evidence presented here supports the existence of a correlation between asthma and depression. By acknowledging these shared biological mechanisms, genetic factors, and epidemiological trends, we can formulate more efficacious strategies for addressing the dual impact of asthma and depression. [ABSTRACT FROM AUTHOR]

Objective Plantar warts (PW) are a benign skin infection of keratinocytes caused by Human Papilloma Virus that can cause significant morbidity leading to an impairment of quality of life (QoL). The objective of this study was to determine the mean Dermatology Life Quality Index (DLQI) in patients with plantar warts. Methods 98 patients were enrolled in this cross-sectional survey conducted in Jinnah Hospital, Lahore. DLQI was determined for each enrolled patient. Results Mean DLQI score was found to be 9.4±5.4 which falls in the category of moderate impairment of QoL. Conclusion PW cause significant morbidity leading to a moderate to severe impairment of DLQI in about two thirds of the cases, especially in young, male and educated subjects with chronic PW. [ABSTRACT FROM AUTHOR]

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.

This study compared the effects of 12 weeks of aerobic training against baseline data of People Living with Human Immunodeficiency Virus (PLWH) Cluster of Differentiation 4 (CD4) cell count, and Health-Related Quality of life (HRQoL) (Physical-health Component Summary (PCS) and Mental-health Component Summary (MCS)). A within-subject quasi-experimental multimethod design was used. There was purposive sampling of participants on Highly Active Antiretroviral Therapy (HAART) under Botswana Network of People Living with HIV/AIDS (BONEPWA). The 28 participants (23 females and 5 males) who met the inclusion criteria were of age 18 to 45. After 6 weeks, one female dropped out of the study. Participants were subjected to 12 weeks of aerobic training, three times a week for 60 minutes per session. The significant differences between CD4 cell count and the HRQoL variables at baseline and week 12 of the participants were compared using the paired t-test. All analysis was done using Statistical Package for the Social Sciences (SPSS) version 24.0 software. The alpha value was set at p<0.05 level of significance. The mean age and standard deviation of participants was 37.7 (± 6.84) years. Statistically significant (p< 0.05) improvements were found in MCS measures after intervention. There were no statistically significant (p>0.05) improvements in CD4 count and PCS measures after intervention. PLWH can be advised to engage in regular aerobic training 3 times a week for 60 minutes especially when on HAART. The research is relatively preliminary; therefore, there could be some replication of the study by other researchers. [ABSTRACT FROM AUTHOR]

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 FROM AUTHOR]

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.

Objective: A cancer diagnosis and subsequent treatment can disrupt the full spectrum of physical, social, emotional, and functional quality of life. But existing psychological treatments are focused primarily on specific psychological symptoms as opposed to improving the overall patient experience. We studied the feasibility and efficacy of a novel digital intervention targeting patient mindsets—core assumptions about the nature and meaning of illness—designed to improve overall health‐related quality of life (HRQoL) in newly diagnosed cancer patients undergoing treatment with curative intent. Methods: Recently diagnosed (≤150 days) adult patients with non‐metastatic cancers undergoing systemic treatment (N = 361) were recruited from across the United States to participate in this decentralized clinical trial. Patients were randomized 1:1 to receive the Cancer Mindset Intervention (CMI) or Treatment as Usual (TAU). Participants in the CMI group completed seven online modules over 10 weeks (2.5 h total) targeting mindsets about cancer and the body. The primary outcome was overall HRQoL, and secondary outcomes were coping behaviors and symptom distress. Results: Patients in the CMI group reported significant (p < 0.001) improvements in adaptive mindsets about cancer and the body over time. Compared with the TAU condition, the CMI group reported significant improvements in overall HRQoL (B = 0.60; 95% CI 0.34–0.85; p < 0.001), increased engagement in adaptive coping behaviors (B = 0.03; 95% CI 0.02–0.04; p < 0.001), and reduced distress from physical symptoms (B = −0.29; 95% CI −0.44 to −0.14; p < 0.01). Effect sizes of these changes ranged from d = 0.42–d = 0.54. Conclusion: A brief mindset‐focused digital intervention was effective at improving physical, social, emotional, and functional HRQoL, increasing adaptive coping behaviors, and reducing physical symptom distress in newly diagnosed cancer patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Trauma-exposed adults with high levels of posttraumatic stress symptoms (PTSS) report poorer health-related quality of life (HRQOL), but less is known about the persistence of this relationship over time. Participants from the Vietnam Era Twin Study of Aging reported on PTSS, health, and sociodemographic characteristics at average age 38; 775 participants reported having been exposed to trauma. Later, at average ages 56 and 62, mental and physical HRQOL were assessed with the Short-Form 36. Premorbid risk for anxiety/neuroticism was evaluated with a polygenic risk score derived from a large genome-wide association study meta-analysis. In multivariate mixed models, having higher levels of PTSS, poorer self-rated health, lower income, and less education at age 38 were associated with worse physical and mental HRQOL two decades later. Chronic health problems at age 38 predicted midlife physical but not mental HRQOL. Although genetic risk for neuroticism was correlated with HRQOL and PTSS, it was no longer significant in multivariate models. Health-related quality of life (HRQOL) predicts morbidity and mortality independently of objective health measures; early interventions may help to mitigate the ongoing impact of trauma on quality of life.

• First study to quantify QALY loss due to varicella in hospitalised children. • First study to describe QALY loss in the carers of children with varicella. • High QALY loss in the family units of children admitted to hospital with varicella. • Significant impact on HRQoL of varicella infection in family units. Although usually benign, varicella can lead to serious complications and sometimes long-term sequelae. Vaccines are safe and effective but not yet included in immunisation programmes in many countries. We aimed to quantify the impact on health-related quality of life (HRQoL) in terms of quality-adjusted life years (QALY) in children with varicella and their families, key to assessing cost-utility in countries with low mortality due to this infection. Children with varicella in the community and admitted to hospitals in Portugal were included over 18 months from January 2019. Children's and carers' HRQoL losses were assessed prospectively using standard multi-attribute utility instruments for measuring HRQoL (EQ-5D and CHU9D), from presentation to recovery, allowing the calculation of QALYs. Among 109 families with children with varicella recruited from attendees at a pediatric emergency service (community arm), the mean HRQoL loss/child was 2.0 days (95 % CI 1.9–2.2, n = 101) (mean 5.4 QALYs/1000 children (95 % CI 5.3–6.1) and 1.3 days/primary carer (95 % CI 1.2–1.6, n = 103) (mean 3.6 QALYs /1000 carers (95 % CI 3.4–4.4). Among 114 families with children admitted to hospital because of severe varicella or a complication (hospital arm), the mean HRQoL loss/child was 9.8 days (95 % CI 9.4–10.6, n = 114) (mean 26.8 QALYs /1000 children (95 % CI 25.8–29.0) and 8.5 days/primary carer (95 % CI 7.4–9.6, n = 114) (mean 23.4 QALYs/1000 carers (95 % CI 20.3–26.2). Mean QALY losses/1000 patients were particularly high for bone and joint infections [67.5 (95 % CI 43.9–97.6)]. Estimates for children's QALYs lost using the CHU9D tool were well correlated with those obtained using EQ-5D, but substantially lower. The impact of varicella on HRQoL is substantial. We report the first measurements of QALYs lost in hospitalised children and in the families of children both in the community and admitted to hospital, providing important information to guide vaccination policy recommendations. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcome measures (PROMs) are not routinely used in clinical care by pediatric liver transplant (LT) teams. The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) assessed feasibility of using a disease‐specific Quality of Life (QoL) questionnaire in the ambulatory setting at 10 SNEPT sites. Methods: A mixed methods feasibility project assessing administration processes, barriers, and user experiences with the Pediatric Liver Transplant Quality of Life (PeLTQL) tool. Iterative processes sought stakeholder feedback across four phases (Pilot, Extended Pilot, Development of a Mobile App PeLTQL version, and Pilot App use). Results: A total of 149 patient–parent dyads completed the PeLTQL during LT clinic follow‐up. Clinicians, parents, and patients evaluated and reported on feasibility of operationalization. Only two of 10 SNEPT sites continued PeLTQL administration after the initial two pilot phases. Reasons include limited clinical time and available personnel aggravated by the COVID‐19 pandemic. In response, a mobile application version of the PeLTQL was initiated. Providing PeLTQL responses electronically was "very easy" or "easy" as reported by 96% (22/23) parents. Conclusions: Administration of a PROM into post‐pediatric LT clinical care was feasible, but ongoing utilization stalled. Use of a mobile app towards facilitating completion of the PeLTQL outside of clinic hours may address the time and work‐flow barriers identified. [ABSTRACT FROM AUTHOR]

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. ISRCTN registry: ISRCTN68403446; Date of registration, August 01, 2014 ′Retrospectively registered'. [ABSTRACT FROM AUTHOR]

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.

Background -- The purpose of this study is to analyze the effects of high-intensity interval training on healthfitness, health related quality of life, and psychological measures in college-aged smokers. Methods -- 40 college-aged male smokers were randomly assigned to 2 groups: a) HIIT group included high-intensity interval cycling training; b) Control group (CON) included participants without formal physical exercise. Intervention lasted for 8 weeks (3 sessions/week, and 33 minutes/session). HIIT group used 65-75% of maximal heart rate (HRmax) with a 20-min maximal work-out at 85%. The health-related quality of life (HRQOL) was assessed using the questionnaire WHOQOL-BREF and assessment of physical health parameters included hemodynamic, anthropometric, lung function and cardiorespiratory assessments. Results -- Significant improvements in HIIT were seen in physical health (P=0.000), psychological state (P=0.001), social relationship (P=0.004), environment (P=0.000), resting heart rate (RHR) (P=0.000), systolic blood pressure (SBP) (P=0.007), rate pressure product (RPP) (P=0.000), mean arterial pressure (MAP) (P=0.000), waist (P=0.003), forced vital capacity (FVC) (P=0.001), forced expiratory volume (FEV) (P=0.027), peak expiratory flow (PEF) (P=0.000), (forced expiratory flow) FEF_25 (P=0.023), FEF_50 (P=0.007), FEF_75 (P=0.009), steps/min (P=0.000), VO2max (P=0.000) and heart rate recovery (HRrec) (P=0.000). Interestingly, significant reductions were seen in the CON group in environmental point (P=0.002), Weight (P=0.002), BMI (P=0.001), lean mass (P=0.024), FEV/FCV (P=0.014), PEF_50 (P=0.007) and FEF_75 (P=0.009). Conclusion -- The high intensity interval training was effective to improve all dimensions of HRQOL, hemodynamic variables, lung function, and cardiorespiratory endurance indicators in college-aged smokers. Contrarily, this study further supports it is evident that smoking gradually results in unhealthy environmental habits, decreased body weight, BMI, and lean mass as well as significant reductions in lung function as observed in our study. This suggests that HIIT can be a preferred form of training for smokers willing to improve or restore their diminishing health components due to smoking. Additionally, this can be applied in clinical conditions to provide HIIT exercise intervention to smokers to yield healthier benefits over a short period of time during smoking cessation programs and/or rehabilitations. [ABSTRACT FROM AUTHOR]

Purpose: Evidence for comparative and cost-effectiveness of weight-loss interventions is lacking as there are no obesity-specific measures fit for this purpose. This study aimed to estimate the extent to which a prototype of a brief, multi-dimensional obesity-specific Preference-Based Index of Weight-Related Quality of Life (PBI-WRQL) could fill this gap. Methods: Longitudinal data from a Canadian bariatric cohort was used. Forty-eight items from the IWQoL-Lite, EQ-5D-3L, and SF-12V2 were mapped onto the WHO ICF domains, and one item was chosen for the dimension based on fit to the Rasch model. Individuals' health ratings (0–100) were regressed on each dimension, and the regression coefficients for the response options were used as weights to generate a total score. Generalized estimation equations were used to compare measure parameters across groups and levels of converging constructs. Results: Pre-surgery data were available on 201 people (Women: 82%; BMI: 48.8 ± 6.7 kg/m2; age: 43 ± 9.0 years) and on 125 (62%) at 6 months post-bariatric surgery. Seven dimensions with three response options formed the PB-WRQL prototype: Mobility/Physical Function, Pain, Depression, Participation, Energy, Peripheral Edema, and Dyspnea. The prototype showed substantial change (mean + 40) with bariatric surgery, higher than the EQ-5D (mean + 11.5). The prototype showed the strongest relationship with BMI at baseline (t = − 3.68) and was the most sensitive to change in BMI (t = − 3.42). Conclusion: This study demonstrates that a brief, 7-dimension index weighted by health impact performed as well as the 31-item IWQoL-Lite and better than the EQ-5D-3L. These findings demonstrate the potential value of the brief PB-WRQL prototype index and support its further development using preference weights to reflect the current generation's needs and concerns. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) are often used in clinical research, but little is known about their performance as longitudinal outcomes. Methods: We used data from ASCEND, a large SPMS trial (n = 889), to investigate changes on the Short Form Health Survey 36 (SF-36 v2) and the Multiple Sclerosis Impact Scale (MSIS-29) over 2 years of follow-up. Results: PROM scores changed little over the 2 years of follow-up. In contrast to physical disability measures, there was no consistent trend in PROM change: significant worsening occurred about as often as improvement. Using a 6-month confirmation reduced the number of both worsening and improvement events without altering their relative balance. There was no clear difference in worsening events in groups based on population characteristics, nor was there a noticeable effect using different thresholds for clinically significant change. Conclusion: We found little consistent change in MSIS-29 and SF-36 over 2 years of follow-up in people with SPMS. Our findings show a disconnect between disability worsening and PROM change in this population. Our findings raise caution about the use of these PROMs as primary outcome measures in SPMS trials and call for a critical reappraisal of the longitudinal use of these measures in SPMS trials. [ABSTRACT FROM AUTHOR]

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.

Background: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. Objective: The primary aim of the study is to evaluate the current situation of palliative care services for pediatric oncology patients from patient's, parents' and physician's perspective and the secondary aim is to highlight the areas of improvement of palliative care services to provide better quality of life for pediatric oncology patients. Methodology: A Cross-sectional questionnaire-based study was conducted on 80 parents/caregivers and young patients, in addition to all health care providers in the pediatric hematology/oncology unit at the Pediatric Hematology/Oncology Unit, Children's Hospital, Ain Shams University over six months. A validated Arabic version for PedsQL4 questionnaire was distributed to patients and/or their parents if feasible. The PedsQL is a 23-item instrument and consists of four domains: physical (eight items), emotional (five items), Social (five items), and School (five items) functioning. A 25 questions questionnaire was offered to physicians in the pediatric hematology oncology unit and other specialties treating hematology oncology patients. The questionnaire was based on review of literature, it was validated and offered to 3 physicians to check the applicability of the questionnaire. The physician perception section of the questionnaire covered confidence in and need for PPC, perceived appropriate referral timing of and barriers to PPC. Results: The current study included the response of 19 parents of 2-4 years old children, 22 parents of 5-7 years old, 23 parents of 8-12 years old and 17 parents of 13-18 years old. Starting age of 5-12 yrs old children also reported their input. The mean score of physical domain was (69.1±21.1, 58.1±23.91, 66.47±26.48, 54.75±27.85, 60.87±27.05, 47.85±22.95, 52.2±24.40) respectively. The mean score of emotional domain (33.76±21.3, 33.86±26.0, 43.18±34.55, 48.92±29.30, 54.62±31.53, 35.3±24.58, 36.76±21.71) respectively. The mean score of social domain (78.92±19.8, 69.54±18.05, 77.28±24.91, 71.74±19.74, 79.14±19.28, 65.88±25.32, 67.94±24.56) respectively. Most school aged patients were home schooled. The worst reported score was the emotional domain especially among (13-18 years) as fear, anger and sadness were mostly reported by both parents and children. Among physicians involved with pediatric oncology patients, the response rate was 62%. All reported the lack of well-structured PPC service and the lack of specialty training in palliative care. The most common reported barrier was the lack of institutions offering PPC as well as the lack of trained manpower. Other common reported barrier was physicians' and parents' perception towards palliative care either physicians giving up or caregivers insisting on continuation of standard treatment. Almost half of physicians see that initiation of palliative care and home based palliation is necessary, 70% did not recommend referring to adult PC centers with the main concern being the lack of experience and knowledge of such centers with pediatric age group. Conclusion: PPC is an essential element of care in patients with malignancy. The lowest score for quality of life were mainly for emotional domain as patients reported fear and worry from the disease prognosis. PPC is not a well established service in our center with most physicians considering PPC as equivalent to end of life care only. The main barrier was lack of manpower and PPC specialized institutions. To improve or initiate this service, specialty training in PPC is a with designation of team of health care professionals (nurse, pediatric oncologist, pain specialist). [ABSTRACT FROM AUTHOR]

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 FROM AUTHOR]

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.

Introduction: Immune thrombocytopenia (ITP) is an autoimmune disorder caused by immunologic destruction of otherwise normal platelets. Patients and physicians differ in their views pertaining to the limitations imposed on patients' daily lives by ITP and its treatment. Poor understanding of ITP symptoms can result in misdiagnosis and complex treatment patterns, and affect patient health-related quality of life (HRQoL). The ITP Life Quality Index (ILQI) is a 10-item patient-reported outcome measure developed for clinical practice to aid discussions between patients and physicians. This research aimed to validate the psychometric properties of the ILQI using data collected in the ITP World Impact Survey (I-WISh). Methods: I-WISh data containing responses to the ILQI from 1507 patients with ITP across 13 countries worldwide was subject to psychometric analysis to evaluate the structure, reliability and validity of the ILQI and assess scoring cut-offs. Results: The ILQI has an overarching unidimensional structure, supporting a total score including all 10 items. Reliability was supported (Cronbach's alpha = 0.90). ILQI scores monotonically increased with ITP severity. ILQI scores correlated with measures of fatigue and emotional well-being, supporting construct validity. Differential item functioning (DIF) analyses showed that ILQI item responses were interpreted similarly between the USA and other Western countries. It was suggested that previous clinical cut-off score of 20 for "impaired HRQoL" was reduced to 17 and a cut-off of 23–25 (rather than 30) was suggested to assess "significantly impaired HRQoL". Conclusion: The validity and reliability of the ILQI to assess HRQoL of patients with ITP is supported. The revised cut-off scores for the ILQI will aid patient-centric decision-making. [ABSTRACT FROM AUTHOR]

Background: Prescription auditing is one of the important tool to avoid misuse of drugs and improves rational use of drugs. The performance of the health care providers related to the appropriate use of drugs can be accessed by analyzing the different prescribing indicators. An Adverse Drug Reaction (ADR) can be defined as 'an appreciably harmful or unpleasant reaction resulting from an intervention related to the use of a medicinal product. This can be assessed by using probability scale, severity assessment scales, etc. Objectives: The main objective of the study was to audit the prescriptions, evaluate the incidence of ADR and assess health related quality of life. Methodology: A Prospective interventional study was conducted in a tertiary care teaching hospital in south Kerala during the study period of 6 months. A total no.of 235 inpatients in general medicine department were included during the study. Results: Out of 235 prescriptions, 1742 drugs were analyzed using prescription auditing checklist. The average no.of drugs were prescribed about 7.41. The incidence of ADRs is 0.025 and 6 were identified and analyzed using Naranjo scale and Hartwig severity assessment scale. In health related quality of life shows significance in age, BMI, gender, socioeconomic status and prescribing indicators in different aspects. Conclusion: There is a need for improvement in the standards of prescription patterns in all aspects. The health related quality of life will helps to assess physical and mental attitudes of patients which may affect their drug therapy. [ABSTRACT FROM AUTHOR]

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 FROM AUTHOR]

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.

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 FROM AUTHOR]

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

• Prospective data on QoL after pulmonary SBRT of patients with small lung nodules. • Long-term preservation of QoL after pulmonary SBRT. • First trial revealing QoL-benefit for lung-SBRT patients with low initial QoL-score. • Long-term QoL-benefit for frail patients encourages lung-SBRT in such patients. • For lung-SBRT 3X12.5 Gy to 60% isodose is efficient and well tolerated. Preserving health related quality of life (HRQOL) plays an important role in considering stereotactic body fractionated radiotherapy (SBRT). The prospective monocenter phase II STRIPE trial investigated long-term HRQOL after SBRT, efficacy and toxicity. Patients with ≤2 pulmonary lesions ≤5 cm were treated with 4DPET/CT-based SBRT (3 × 12.5 Gy or risk-adapted 5 × 7 Gy, to 60% isodose). Follow up (FU) was performed 2 and 7 weeks after SBRT, then 3-monthly for 2 years with assessment of response (primary endpoint: 2-year cumulative incidence of local progression (LP); secondary endpoints: local progression free survival (LPFS), overall survival (OS) and toxicity (CTCAE)). Impact of predefined patient and treatment related factors on HRQOL (EORTC QLQ-C30 and EORTC QLQ-LC13) was evaluated. Between 02/2011 and 11/2014, 100 patients were given SBRT for 56 NSCLC and 44 pulmonary metastases (M1). Long-term FU overall revealed stable Quality of Life (QoL)/Global health status (GHS), functions-scores and symptoms. For QoL/GHS, patients with low (

The capacity of TAVI-programs and numbers of sites performing TAVI has rapidly increased. This necessitated the initiation of the Rotterdam TAVI Care & Cure Program, aiming to improve patient-centered care during the TAVI pathway. Consenting patients with severe aortic stenosis and an indication for TAVI will be included. The TAVI Care & Cure program will facilitate prognostic contributions to improve outcomes, patient satisfaction and quality of life in patients with valvular heart disease who are treated with a transcatheter aortic valve implantation in collaboration with the departments of cardiology, cardio-thoracic surgery, anesthesiology and geriatrics. With a single center observational registry, we aim to assess the TAVI patient clinical pathway, focusing on pre, peri and post interventional variables including functional status and HRQoL. We will evaluate the patient's complexity by applying an extended multidisciplinary approach, which includes a systematic application of geriatric assessments of frailty and cognitive function. • To create a novel comprehensive patient centred pathway for patients eligible for TAVI. • To create an enhanced multi disciplinary heart team with the addition of the department of geriatrics. • To improve risk stratification and patient selection for transcatheter aortic valve implantation. • To predict more distinctly the differentiation between those patients who will benefit from TAVI and those who will not. • To access potential parameters applicable for an early discharge strategy. [ABSTRACT FROM AUTHOR]

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

In 2011 a European consensus defined the target treatment of psoriasis, with PASI 75 as the main objective and had been adopted in guidelines around the world. In those 9 years the progress of the medications to treat psoriasis have been able to obtain an almost clear skin. Current literature promotes PASI 90, PASI absolute and patient reported outcomes as the goal of recent treatments. PASI 90 and PASI absolute <3 have a strong relationship with DLQI 0-1 and permit to measure the satisfaction of patients and doctors with the psoriasis treatments. This is the moment to move forward to current and realistic goals. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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.