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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., Competing Interests: Declarations. Ethics approval and consent to participate: This study was approved by the Tokyo Medical and Dental University Review Board (M2021-334). Written informed consent was obtained from all the family participants who responded to the initial survey questionnaire. For the corresponding patient information, the requirement for written informed consent was waived (opt-out) by the Institutional Review Board due to the retrospective study design. Consent for publication: Not applicable. Competing interests: Nobuyuki Nosaka received a research grant from Sharp Corporation, Osaka, Japan, for this study., (© 2024. The Author(s).)

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., Competing Interests: Declarations. Ethics approval and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: OO and KE are employees of MSD (UK) Limited, a subsidiary of Merck & Co., Inc., Rahway, NJ, USA and may own stock in Merck & Co., Inc., Rahway, NJ, USA. EM is an employee of Merck Sharp & Dohme. MV and RP and employees of Parexel International., (© 2024. The Author(s).)

In children, assessing health-related quality of life (HRQoL) and identifying the factors that can influence it are essential to understanding their overall health and well-being. Although eating disorders in children have been associated with reduced HRQoL, the impact of maladaptive eating behaviors, such as external eating, emotional eating and restrained eating, on children's HRQoL has not yet been prospectively explored. Therefore, the aim of this study was to determine whether external, emotional and restrained eating at baseline was associated with HRQoL in children after 14.65 months (95% CI: 14.57-14.73) of follow-up. The study involved 690 boys and 681 girls aged between 8 and 10 years, recruited from primary schools in Catalonia (Spain). To assess the relationship between external, emotional and restrained eating behaviors at baseline and HRQoL at follow-up, the Dutch Eating Behavior and KIDSCREEN-10 questionnaires were used, respectively. After adjusting for sex, age, intervention allocation group, school, maternal education, zBMI and physical activity, external and emotional eating behaviors at baseline were negatively associated with HRQoL at follow-up (p < 0.01). These associations were attenuated after final adjustment for HRQoL at baseline. Furthermore, a composite score of maladaptive eating behaviors at baseline was created by summing the individual scores for emotional, restrained and external eating behaviors. This composite score showed a significant inverse association with HRQoL at follow-up, even after adjusting for baseline HRQoL (p = 0.024). In conclusion, external and emotional eating behaviors seems to negatively affect HRQoL prospectively in Spanish children. The composite score of maladaptive eating behaviors showed a stronger inverse association with HRQoL than each eating behavior individually. TRIAL REGISTRATION NUMBER: ISRCTN registry: ISRCTN68403446; Date of registration, August 01, 2014 'Retrospectively registered'., Competing Interests: Declaration of competing interest The authors declare no conflicts of interests., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

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.

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., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Authors.)

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., Competing Interests: Plavec Davor is an Academic Editor for PeerJ. Plavec Davor is employed by Prima Nova, a private health institution. The authors declare that they do not have any other competing interests., (© 2023 Vrbica et al.)

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., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

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., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: Over the last two decades, there has been phenomenal advancement in critical care medicine and patient management. Many patients recover from life-threatening illnesses that they might not have survived a decade ago. Despite a decrease in mortality, these survivors endure long-lasting sequelae like physical, mental, and emotional symptoms., Methods: Patients after intensive care unit (ICU) discharge were assessed in a follow-up outpatient department (OPD) clinic for anxiety, stress, and depression. Patients were asked to fill out the questionnaires Depression, Anxiety and Stress Scale-21 (DASS-21) and Short Form-36 (SF-36) for assessment of health-related quality of life (HRQOL) at 4th, 6th, and 8th months after discharge. ICU data were recorded, including patients' demographics, severity of illness and length of stay, and duration of mechanical ventilation. Patients who failed to follow-up in OPD on designated dates were assessed telephonically., Results: Depression showed a positive, strong, and moderate correlation between length of stay and mechanical ventilation duration. A positive correlation was found between stress and length of stay and duration of mechanical ventilation. A positive strong correlation was found between anxiety and length of ICU stay, and a moderate positive correlation was found between anxiety and duration of mechanical ventilation. A weak correlation was found between age and neuropsychiatric outcomes., Conclusion: The severity of depression, anxiety, and stress was significantly higher at four months compared to six months. Severity decreased with time. Prolonged ICU stay increased levels of anxiety, depression, and stress. HRQOL improved from four to six months., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2023, Joshi et al.)

Introduction and Aims: 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., Methods: 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., Results: 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., Conclusions: 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., (Copyright © 2022 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

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., (© 2022 Wiley Periodicals LLC.)

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/m 2 ; 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., (© 2022. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

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.

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., (© 2022. The Author(s).)

Background: Urolithiasis has a significant impact on patients' health-related quality of life (HRQoL)., Objective: To develop a core patient-reported outcome measure (PROM) using modern psychometric methods to quantify the impact of urolithiasis and different treatments., Design, Setting, and Participants: Adult patients with urinary calculi, attending urology departments, covering all index categories and treatment spectrum, participated during different development phases. The pilot instrument was created from potential items (phases 1 and 2) within the conceptual framework. The instrument was pretested (phase 3) and then underwent psychometric evaluation in two parts (phases 4 and 5)., Outcome Measurements and Statistical Analysis: The validity and reliability of the new PROM were assessed using Rasch measurement theory (RUMM 2030 statistical software) and traditional analyses., Results and Limitations: In total, 683 patients (median age 51 yr, range 18-92 yr) participated during different phases. The initial 60-item draft (five scales) was completed by 212 patients (phase 4). A revised 25-item draft was produced after removal of unstable items. In the second field test, the revised version was evaluated by 369 patients. This led to the final Urinary Stones and Intervention Quality of Life (USIQoL; 15 items) with summated logit scores. The PROM includes three scales: pain with physical health (six items), psychosocial health (seven items) and work performance (two items). Lower scores indicate better outcomes. Results demonstrate that USIQoL is reliable (r ≥ 0.8) and internally consistent (α ≥ 0.7), and has good construct validity (good hypothesised correlations, r > 0.3) and satisfactory sensitivity to change (p < 0.01). All scales demonstrated unidimensionality with good item fit and person separation indices. A limitation is that USIQoL was developed in the English language within the UK population., Conclusions: USIQoL is a short, unidimensional, valid, and reliable PROM for assessing the HRQoL impact of urinary calculi and treatments. It is expected to serve as a core PROM across the entire spectrum of urolithiasis., Patient Summary: Kidney stones are a common condition for which various treatment options are available. The condition and treatments have a significant impact on a patient's quality of life. This can be measured objectively using a valid and reliable patient-reported outcome measure (PROM) developed using modern methods. We have developed a PROM that provides helpful and accurate measurement useful for all stakeholders., (Copyright © 2020 European Association of Urology. All rights reserved.)

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., (© 2021. The Author(s).)

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., (© 2021. The Author(s).)

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., Conclusions: 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., Competing Interests: Conflicts of Interest The authors declare no conflicts of interest., (Copyright © 2021 Jaini Patel, Barry A. Franklin, Disha Pujary, Gagandeep Kaur, Ankita Deodhar, Sakshi Kharbanda, Aashish Contractor.)

Introduction: Investigations in associations between subjective health-related quality of life (HRQoL) measures and objective clinical assessments in patients with early-onset scoliosis (EOS) are limited. The purpose of this study is to investigate the association between pulmonary function rated by parents and pulmonary function testing (PFT) in patients with EOS., Materials/methods: In this cross-sectional study, patients with EOS at any stage of treatment from 2011 to 2018 were identified in 2 registries including 33 centers. Parents' perception of pulmonary function was evaluated using pulmonary function (PF) domain in the Early-Onset Scoliosis 24 item Questionnaire (EOSQ-24). PFT measures included FVC% predicted, FEV1/FVC, and TLC% predicted. All PFT predicted values utilized arm span. PFT and EOSQ-24 questionnaire were completed within 180 days of each other with an average day difference of 26 days., Results: 176 patients (mean age: 10.4 years old, female: 56%) were identified. 33% of patients were of congenital/structural etiology, 27% neuromuscular, 26% syndromic, and 14% idiopathic. Wide variance and lower scores of PF domain were reported by parents at lower FVC% predicted values (< 50%). As FVC% predicted values increased, PFD scores increased with simultaneous decreases in variance with few exceptions., Conclusion: More variability and frequent lower pulmonary function values are reported by parents when percent forced vital capacity (FVC%) is < 50%. This likely reflects the degree to which children adapt to restrictive lung disease and the limits on adaptation that occur increasingly as lung function falls below 50% predicted. As a direct linear association with high correlation was expected, more research into the character of what the PF domain is measuring is necessary., Level of Evidence: IV.

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.

Background and Purpose: 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., Materials and Methods: 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., Results: 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 (

Background: 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., Methods: 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., Conclusion: 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., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Objective: We investigated: (i) the cognitive performance of type 2 diabetes mellitus (T2DM) patients compared to healthy control participants and (ii) the Health-related Quality of life (HRQOL) of type 2 diabetics with neuropsychological deficits., Method: We conducted a prospective study in (N = 44) T2DM patients and (N = 28) demographically matched healthy controls. All participants were assessed with a flexible comprehensive neuropsychological battery of tests that have been standardized in Greece and found to be sensitive in detecting cognitive deficits in type 2 diabetics. They were additionally assessed on measures of general intelligence, general mental state, and depression. They were also administered the WHO QOL-BREF self-report questionnaire to evaluate perceived health-related quality of life., Results: Groups were well matched on baseline demographic characteristics and estimated premorbid intelligence. The groups did not differ on general mental state but varied in the encoding of verbal material, total verbal learning, delayed recall of verbal information, mental information processing speed, phonological and semantic verbal fluency and executive functions, set-shifting. Glycosylated hemoglobin levels and an interaction of age, education, and premorbid intelligence were the most important predictors of domain-specific neuropsychological performance. T2DM patients with deficits in verbal learning, executive functions, set-shifting, and semantic verbal fluency, had significantly lower QOL in the domains of psychological and environmental health, social relationships, and general health, respectively., Conclusion: T2DM patients have cognitive deficits on several domains compared to healthy participants. Domain specific neuropsychological deficits in middle aged T2DM patients have a significant impact on HRQOL.

Background: Health related quality of life is a critical concept during the perinatal period but remains under-researched. The International Consortium for Health Outcomes Measurement have included the Patient Reported Outcomes Measurement Information System (PROMIS®) Global Short Form (GSF) in their core outcome set for pregnancy and childbirth to measure health related quality of life. The PROMIS GSF has not been fully evaluated as a valid and reliable instrument in this population. This study assessed the psychometric properties of the PROMIS GSF during pregnancy and postpartum period., Methods: PROMIS GSF was administered to a sample of 309 pregnant women at four time-points during pregnancy (≤ 27 and 36-weeks) and postpartum (6- and 26-weeks). The structural validity, internal consistency reliability, construct validity, and responsiveness of the PROMIS GSF were evaluated. The internal structure of the PROMIS GSF was explored using Rasch Measurement Theory. Response format, item fit, differential item functioning (item bias), dimensionality of the scale and its targeting were assessed., Results: Two revised subscales (Mental Health: four items; and Physical Health: five items) showed good fit to the Rasch model. The revised mental health subscale demonstrated good internal consistency reliability during pregnancy and postpartum period (α = .88 and .87, respectively). The internal consistency reliability of the physical health subscale was adequate (α = .76 and .75, respectively). The revised mental health subscale was sensitive to group differences according to a history of mental health disorder, income, smoking status, drug use, stress levels and planned versus unplanned pregnancy. Differences in scores on the revised physical subscale were detected for groups based on obesity, income, drug use, smoking status, stress, and history of mental health disorders. Scores on both subscales recorded significant changes across the four time-points, spanning pregnancy and postpartum period., Conclusions: The revised version of the PROMIS GSF was better able to measure mental and physical health during pregnancy and postpartum period compared to the original version. Findings support the clinical and research application of the PROMIS GSF within the International Consortium for Health Outcomes Measurement Standard Set of Outcome Measures for Pregnancy and Childbirth. Ongoing psychometric analysis of the PROMIS GSF is recommended in other maternity populations.

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: 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/m 2 (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 < 0.001. By domain, the highest post intervention mean score was self-image 71.46 (SD: 22.85), followed by social stigma 68.77 (SD: 28.70), physical 61.83 (SD: 24.25) and trying to lose weight 61.24 (SD: 27.32). There was no significant association between weight reduction and HRQOL improvement., Conclusion: Weight loss intervention programme utilizing behavioural modification has led to a significant improvement in HRQOL among overweight and obese housewives.

Background: Endoluminal vacuum therapy (EVT) has been successfully established with promising survival rates in the treatment of anastomotic leakages after esophagectomy. It is still unclear how this therapy affects health related quality of life (HRQOL)., Methods: HRQOL was prospectively assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30) questionnaire. Assessment was carried out prior to surgery, after discharge, 6 months and 12 months after surgery. We compared HRQOL after EVT (n=23) to patients without anastomotic leakages as a control group (n=50). Investigated parameters included age, sex, and localization of anastomosis, number of EVT sessions, length of ICU and hospital stay, therapy failure, anastomotic stricture, tumour stage, neoadjuvant and adjuvant treatment, sepsis., Results: After esophagectomy HRQOL increased within 12 months. Compared to patients without leakages the EVT-group showed significantly better HRQOL-scores for pain, social and emotional functioning after discharge and 6 months after surgery. In the long-term follow up HRQOL was comparable between the groups. After EVT age, advanced tumour stage, tumour recurrence, anastomotic strictures, length of ICU and hospital stay and length of EVT had a significant influence on HRQOL., Conclusions: EVT is a promising therapeutic option in leakages after esophagectomy. In the long-term, HRQOL of EVT-treated patients is comparable to patients, who did not suffer from postsurgical leakages., Competing Interests: Conflicts of Interest: The authors N Heits, C Schafmayer, J Hampe, B Schniewind and JH Egberts received financial support by B. Braun (Melsungen, Germany) for talks referred to Eso-Sponge® system therapy and visits of esophagus disease related conferences. The other authors have no conflicts of interest to declare.

Objectives: Health-related quality of life (HRQOL) is a key indicator of health. However, HRQOL data from representative populations in South Asia are lacking. This study aims to describe HRQOL overall, by age, gender and socioeconomic status, and examine the associations between selected chronic conditions and HRQOL in adults from three urban cities in South Asia., Methods: We used data from 16 287 adults aged ≥20 years from the baseline survey of the Centre for Cardiometabolic Risk Reduction in South Asia cohort (2010-2011). HRQOL was measured using the European Quality of Life Five Dimension-Visual Analogue Scale (EQ5D-VAS), which measures health status on a scale of 0 (worst health status) to 100 (best possible health status)., Results: 16 284 participants completed the EQ5D-VAS. Mean age was 42.4 (±13.3) years and 52.4% were women. 14% of the respondents reported problems in mobility and pain/discomfort domains. Mean VAS score was 74 (95% CI 73.7 to 74.2). Significantly lower health status was found in elderly (64.1), women (71.6), unemployed (68.4), less educated (71.2) and low-income group (73.4). Individuals with chronic conditions reported worse health status than those without (67.4 vs 76.2): prevalence ratio, 1.8 (95% CI 1.61 to 2.04)., Conclusions: Our data demonstrate significantly lower HRQOL in key demographic groups and those with chronic conditions, which is consistent with previous studies. These data provide insights on inequalities in population health status, and potentially reveal unmet needs in the community to guide health policies., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Air pollution originating from road traffic is a known risk factor of respiratory and cardiovascular disease (both in terms of chronic and acute effects). While adverse effects on cardiovascular health have also been linked with noise (after controlling for air pollution), noise exposure has been commonly linked to sleep impairment and negative emotional reactions. Health is multi-faceted, both conceptually and operationally; Health-Related Quality of Life (HRQOL) is one of many measures capable of probing health. In this study, we examine pre-collected data from postal surveys probing HRQOL obtained from a variety of urban, suburban, and rural contexts across the North Island of New Zealand. Analyses focus on the covariance between air pollution annoyance and noise annoyances, and their independent and combined effects on HRQOL. Results indicate that the highest ratings of air pollution annoyance and noise annoyances were for residents living close to the motorway, while the lowest were for rural residents. Most of the city samples indicated no significant difference between air pollution- and noise-annoyance ratings, and of all of the correlations between air pollution- and noise-annoyance, the highest were found in the city samples. These findings suggest that annoyance is driven by exposure to environmental factors and not personality characteristics. Analysis of HRQOL indicated that air pollution annoyance predicts greater variability in the physical HRQOL domain while noise annoyance predicts greater variability in the psychological, social and environmental domains. The lack of an interaction effect between air pollution annoyance and noise annoyance suggests that air pollution and noise impact on health independently. These results echo those obtained from objective measures of health and suggest that mitigation of traffic effects should address both air and noise pollution.

Background: Androgen deprivation therapy (ADT) is an effective palliation treatment in men with advanced prostate cancer (PC). However, ADT has well documented side effects that could alter the patient's health-related quality of life (HRQoL). The current study aims to test whether a genetic stratification could provide better knowledge for optimising ADT options to minimize HRQoL effects., Methods: A cohort of 206 PC survivors (75 treated with and 131 without ADT) was recruited with written consent to collect patient characteristics, clinical data and HRQoL data related to PC management. The primary outcomes were the percentage scores under each HRQoL subscale assessed using the European Organisation for Research and Treatment of Cancer Quality of Life questionnaires (QLQ-C30 and PR25) and the Depression Anxiety Stress Scales developed by the University of Melbourne, Australia. Genotyping of these men was carried out for the aldo-keto reductase family 1, member C3 (AKR1C3) rs12529 single nucleotide polymorphism (SNP). Analysis of HRQoL scores were carried out against ADT duration and in association with the AKR1C3 rs12529 SNP using the generalised linear model. P-values <0 · 05 were considered significant, and were further tested for restriction with Bonferroni correction., Results: Increase in hormone treatment-related effects were recorded with long-term ADT compared to no ADT. The C and G allele frequencies of the AKR1C3rs12529 SNP were 53·4 % and 46·6 % respectively. Hormone treatment-related symptoms showed an increase with ADT when associated with the AKR1C3 rs12529 G allele. Meanwhile, decreasing trends on cancer-specific symptoms and increased sexual interest were recorded with no ADT when associated with the AKR1C3 rs12529 G allele and reverse trends with the C allele. As higher incidence of cancer-specific symptoms relate to cancer retention it is possible that associated with the C allele there could be higher incidence of unresolved cancers under no ADT options., Conclusions: If these findings can be reproduced in larger homogeneous cohorts, a genetic stratification based on the AKR1C3 rs12529 SNP, can minimize ADT-related HRQoL effects in PC patients. Our data additionally show that with this stratification it could also be possible to identify men needing ADT for better oncological advantage.

Background: The concept of health-related quality of life (HRQoL) was brought up decades ago and has been well utilized in many different areas. Regarding immune thrombocytopenia (ITP) management, much work has been done to emphasize the necessity of taking HRQoL into consideration. However, data on HRQoL of children with chronic ITP remain rare., Methods: This is a cross-sectional study. Children with chronic ITP aged from 2 to 18 and their parents were recruited. Participants completed the Pediatric Quality of Life Inventory™ (PedsQL™) and Kids' ITP Tools (KIT) questionnaires at only one time. The Pearson's correlation was examined between these measures for the pooled samples., Results: A total of 42 families participated. Mean child self-report scores of KIT and PedsQL™ were 78.60 (SD = 12.40) and 85.13 (SD = 14.12), respectively, corresponding to parent proxy report scores, which were 73.40 (SD = 19.96) and 85.10 (SD = 13.56), respectively. Mean score of KIT parent impact report was only 40.39 (SD = 19.96). Significantly higher KIT scores (self-report and parent proxy) were observed in children with PLT more than 30 × 10*9/L compared to others, and this difference was even more noticeable in the PedsQL™ parent proxy report group (p < 0.001). As with intravenous immunoglobulin, the statistics difference appeared only in KIT child self-report group (p = 0.03), while for bone marrow examination, the difference appeared only in PedsQL™ parent proxy report group (p = 0.01). A negative relationship was apparent between duration of disease and scores. Gender and use of corticosteroids had no impact on the KIT and PedsQL™ scores here. Internal consistency reliability was demonstrated with Cronbach's alpha for all scales above the acceptable level of 0.89 (range from 0.88 to 0.97). There was a substantial concordance (p < 0.001) between the child and parent proxy scores (ICC for KIT is 0.59, ICC for PedsQL™ is 0.85). Meanwhile, KIT scores are correlated with PedsQL™ (r = 0.75 for child self report, r = 0.61 for parent proxy report)., Conclusions: ITP affects HRQoL of children and parents. Parents are much more concerned with the disease than their children, which seriously influence their HRQoL as a result. The cross-culture translated KIT is reliable and valid with acceptable correlation to the PedsQL™. KIT provides valuable information of childhood ITP and will be a reliable outcome measure for further clinical research on HRQoL.

Background: Responses to diagnosis and treatment of cancer are mediated by a patient's illness perceptions. Such perceptions, though different among individuals, may be culturally dependent, and act upon health related quality of life (HRQOL). Over time, individual patients show different types of response trajectories. Four issues were investigated: (I) country and disease differences in illness beliefs between Japanese and Dutch patients with lung or breast cancer; (II) country and disease differences in HRQOL in early chemotherapy; (III) individual, country, and disease differences among HRQOL trajectories; (IV) the impact of illness beliefs on HRQOL trajectories., Methods: A total of 89 Japanese and Dutch patients with lung or breast cancer cooperated immediately before, one week after, and eight weeks after the start of chemotherapy. Data included the EORTC QLQ-C30 quality of life (QL) questionnaire and the Brief Illness Perception Questionnaire (B-IPQ). EORTC QLQ-C30 scales were summarized by two dimensions: generalized quality of life (GENQOL) and psychological well-being (PSYQOL)., Results: (I) Japanese patients had higher means on B-IPQ's concern and time line than Dutch patients. Japanese lung cancer patients had a higher mean on treatment control than all other patients; (II) no differences between country and cancer type occurred on the two HRQOL dimensions. First assessment HRQOL differed significantly from the second and third assessments without differences between the latter two. Between the first two assessments, a decrease in GENQOL occurred, together with an improvement in PSYQOL; (III) individual differences dominated the trajectories; (IV) negative beliefs usually coincided with lower scores on GENQOL and PSYQOL. Patients initially lower on PSYQOL generally showed larger improvement., Conclusions: Individual differences in HRQOL dominate differences between culture and cancer type, and illness beliefs influence HRQOL changes in individual patients. Clinical application is possible through influencing the patient's illness beliefs to create an optimal starting position for chemotherapy.

Introduction: Total amputation, as a treatment for advanced penile cancer, significantly debilitates the patient's quality of life and sexual function. The aim of the study was to assess the quality of life in patients who had undergone total penectomy., Material and Methods: The questionnaires EORTC QLQ C-30, SES, CMNI, and a modified IIEF-15 questionnaire, were sent to 11 patients., Results: A total of 10 patients returned the questionnaires completed. The results of the overall quality of life, the median result in individual domains, as assessed by the EORT QLQ C-30 questionnaire, were clearly lower than the reference results. There were statistically significant differences in the results of the QLQ C-30, concerning the role-functioning domain in relation to age (p = 0.008) and education (p = 0.032), in the domain of emotional functioning in relation to education (p = 0.008) and in the domains of physical functioning in relation to the partner relationship (p = 0.032). A significant number of patients were sexually inactive. Sexual activity as defined by touching the area of the pubic symphysis at the scars of the penis, touching and fondling perianal areas or the scrotum and watching things/people that cause excitement was observed in 2/10, 1/10 and 2/10 of patients respectively. In 5/6 of these patients, partnership relationships did not deteriorate, including one patient for whom the relationship actually improved., Conclusions: The results obtained indicate that total amputation of the penis significantly affects one's sex life and overall quality of life. However, this does not have negative implications in terms of partnership relations, self-assessment or the evaluation of masculinity.

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., (© 2015 by Kerman University of Medical Sciences.)

Purpose: The Functional Assessment of Cancer Therapy-Epidermal Growth Factor Receptor Inhibitor 18 (FACT-EGFRI-18) is a patient-reported outcomes questionnaire developed to assess the effect of EGFRI on patients. The FACT-EGFR-18 was translated into Dutch and evaluated in order to document that the translation adequately captures the concepts of the original English-language version of the questionnaire and is readily understood by subjects in the target population., Method: Translation of the FACT-EGFRI-18 from English to Dutch was accomplished by employing the Functional Assessment of Chronic Illness Therapy (FACIT) multilingual translation methodology. Ten native-speaking residents of the target country who reported EGFRI associated dermatological adverse events (dAEs) were asked to review the translation of the harmonized FACT-EGFRI-18., Results: Participants generally found the Dutch FACT-EGFRI-18 easy to understand and complete. In addition, the translation retained the original meaning of the FACT-EGFRI-18 items and instructions. Based on the results of the cognitive debriefing interviews, no changes to improve clarity and comprehension of translations were identified., Conclusions: The Dutch FACT-EGFRI-18 demonstrates content validity and linguistic validity, and was found conceptually equivalent to its English source, thus confirming linguistic validation. The results suggest that the Dutch FACT-EGFRI-18 can be applied to measure dAE related health related quality of life in Dutch-speaking patients undergoing EGFRI therapy. Formal validation of the Dutch FACT-EGFRI-18 is ongoing., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Purpose: The aim of this study was to assess the validity of the European Organization for Research and Treatment of Cancer Quality of Life, Core 30 (EORTC QLQ-C30) and Functional Assessment of Chronic illness Therapy-Lymphoma (FACT-Lym) instruments (Greek version) in patients with lymphoma undergoing chemotherapy, as well as the comparative evaluation of the questionnaires themselves., Method: Health related quality of life (HRQoL) was assessed using the two previously mentioned instruments as well as the generic Short Form 36 (SF-36), which was used as a standard and its scores were compared to the corresponding norms of the Greek general population. The sample consisted of 80 newly diagnosed patients with lymphoma, who had completed their chemotherapy treatment. Reliability (Cronbach's a), central tendency and variability for the scales were assessed. Associations between the instruments' scales were examined via Spearman's correlations., Results: Cronbach's a, was >0.70 for all the scales, with exception of the emotional well being scale of FACT-Lym and two functional scales of QLQ-C30. There is a significant correlation between similar scales of the questionnaires, and particularly strong (>0.50) between global, functional and physical subscales of the FACT-Lym and QLQ-C30 instruments. Also, five scales of the SF-36, showed significantly lower mean values compared to the corresponding Greek norms., Conclusions: The Greek versions of FACT-Lym and QLQ-C30 appear to be reliable and valid tools for assessing HRQoL in this category of patients. The two disease-specific QoL instruments complement each other and neither can be replaced by the other., (Copyright © 2013 Elsevier Ltd. All rights reserved.)