Evaluate Quality Of Life Research Articles

Comparison of proximal femoral nail antirotation internal fixation and artificial hip replacement for elderly patients with intertrochanteric fractures.

To compare the effects of proximal femoral nail antirotation (PFNA) internal fixation and artificial hip replacement (AHR) on serum inflammatory factors and hip function recovery in elderly patients with intertrochanteric fractures (IFs). One hundred and thirty patients with IFs who underwent surgery at the People's Hospital of Pingyang between July 2018 and July 2020 were enrolled. Sixty-five patients received PFNA internal fixation (fixation group) and 65 received AHR (replacement group). Surgical indicators and complications were recorded in both groups. The Harris Hip Scale was used to score hip joint function, the Visual Analog Scale (VAS) to assess pain, the MOS 36-Item Short-Form Health Survey (SF-36) to evaluate life quality, and enzyme-linked immunosorbent assay to measure serum tumor necrosis factor-α (TNF-α), interleukin (IL)-6, and IL-1β. The replacement group experienced notably shorter hospitalization times, less complete weight-bearing time, and earlier time to walk compared to the fixation group (all P<0.05). The replacement group also showed a lower incidence of poor fracture healing and complications (both P<0.05). Additionally, on postoperative days 3, 15, and 45, the replacement group had notably lower VAS scores (all P<0.05). Furthermore, the replacement group exhibited higher Harris Hip Scale scores at 1, 2, and 3 months post-surgery (all P<0.05). Higher postoperative SF-36 scores were also observed in the replacement group (P<0.05). On postoperative day 30, both groups presented decreases in TNF-α, IL-6, and IL-1β levels compared to preoperative levels, with even lower levels in the replacement group (all P<0.05). AHR can help elderly patients with IFs ambulate earlier, speed up hip function recovery, reduce inflammation, and improve life quality with fewer postoperative complications, making it worthy of clinical promotion.

Treatment Adherence Effect on the Visual Acuity of Behçet’s Uveitis Patients

ABSTRACT Purpose This study aimed to explore the relationship between treatment adherence, visual acuity, quality of life (QoL), depression, and anxiety levels in individuals with Behçet’s uveitis (BU). Methods A total of 55 BU patients and 55 healthy controls completed sociodemographic questionnaires, the Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), World Health Organization Quality of Life Questionnaire-BREF version (WHOQOL-BREF), Self-reported Questionnaire About Treatment Compliance, and the Morisky Medication Adherence Scale (MMAS). The scores obtained from these scales were analyzed to assess the relationship between treatment adherence, visual acuity, QoL, depression, and anxiety levels. Results The results revealed that 36 (65.4%) of the 55 BU patients exhibited depressive symptoms, while 45 (81.8%) of them experienced symptoms of anxiety. Patients with BU demonstrated significantly higher BAI and BDI scores compared to the healthy control group (p < 0.001). Furthermore, the patient group reported lower mean scores across multiple domains of the WHOQOL-BREF questionnaire, including general health, psychological health, social relationships, and environment (p < 0.05). Moreover, a significant association was observed between low treatment adherence and lower values of best-corrected visual acuity (BCVA) (p < 0.05), as well as a higher frequency of uveitis attacks (p = 0.005). Conclusion Poor treatment adherence in BU patients has a negative effect on final visual acuity outcomes. Moreover, BU patients experience lower QoL and higher rates of depression and anxiety compared to the healthy control group. These findings highlight the importance of addressing treatment adherence and psychological well-being in the management of BU.

Feasibility of Quality of Life Assessment in Patients with Lymphoma Aged ≥80 Years Receiving Reduced-Intensity Chemotherapy: A Single-Institute Study.

Quality of life (QOL) must be carefully monitored in older patients with lymphoma who are suitable for chemotherapy, but few reports have assessed QOL in older patients who received reduced-intensity chemotherapy. This study investigated QOL in patients with lymphoma aged ≥80 years to clarify the feasibility of such assessments following reduced-intensity chemotherapy. QOL was prospectively analyzed (using the QOL Questionnaire for Cancer Patients Treated with Anticancer Drugs (QOL-ACD)] and the SF-36®, a comprehensive survey of patient health) among 13 patients (seven women) aged ≥80 years with lymphoma who received reduced-intensity chemotherapy at 4-week intervals at Kyushu University Beppu Hospital between June 2022 and August 2023. Patients were assessed at baseline, in the middle of the protocol, at the end of the protocol, and 6 months after the end of the protocol. The overall response rate was 69%. Almost all severe adverse events (10 patients) occurred during early cycles (cycles 1-2). Common adverse events included hematological toxicities such as neutropenia (10 patients). The daily activity (p = 0.048) and social attitude (p = 0.027) scores of the QOL-ACD and the general health perception (p = 0.044) and social functioning (p = 0.030) scores of the SF-36® were significantly improved during and after chemotherapy. Reduced-dose chemotherapy, if implemented before treatment selection, might permit evaluations of QOL in older patients aged ≥80 years; further investigation is warranted.

Real life data: follow-up assessment on Spanish Gaucher disease patients treated with eliglustat. TRAZELGA project

BackgroundThe availability of multiple treatments for type 1 Gaucher disease increases the need for real-life studies to evaluate treatment efficacy and safety and provide clinicians with more information to choose the best personalized therapy for their patients.AimsTo determine whether treatment with eliglustat produces, in adult GD1 patients, ans optimal response in daily clinical practice.MethodsWe designed a real-life study with 2 years of follow-up (TRAZELGA [GEE-ELI-2017-01]) to uniformly evaluate the response and adverse events to eliglustat treatment. This study, conducted in 30 patients across Spain and previously treated with other therapies, included the evaluation of safety and efficacy by assessing visceral enlargement, bone disease (DEXA and T and Z scores), concomitant treatments and adverse events, as well as a quality of life evaluation (SF-36). In addition, the quantification of classical biomarkers (chitotriosidase activity, CCL18/PARC and glucosylsphingosine (GluSph)) and new candidates for GD biomarkers (YKL-40, cathepsin S, hepcidin and lipocalin-2 determined by immunoassay) were also assessed. Non-parametric statistical analysis was performed and p < 0.05 was considered statistically significant.Main ResultsThirty patients were enrolled in the study. The median age was 41.5 years and the male–female ratio was 1.1:1. 84% of the patients had received ERT and 16% SRT as previous treatment. The most common symptoms at baseline were fatigue (42%) and bone pain (38%), no patient had a bone crisis during the study, and two years after switching, 37% had reduced their use of analgesics. Patient-reported outcomes showed a significant increase in physical function scores (p = 0.027) and physical pain scores (p = 0.010). None of the enrolled patients discontinued treatment due to adverse events, which were mild and transient in nature, mainly gastrointestinal and skin dryness. None of the biomarkers show a significant increase or decompensation after switching. CCL18/PARC (p = 0.0012), YKL-40 (p = 0.00004) and lipocalin-2 (p = 0.0155) improved after two years and GluSph after one year (p = 0.0008) and two years (p = 0.0245) of oral therapy.ConclusionIn summary, this real-life study, showed that eliglustat maintains stability and can improve quality of life with few side effects. Significant reductions in classic and other novel biomarkers were observed after two years of therapy.

Elderly Role Performance Occupational Therapy

AbstractBackgroundDementia is a disease that is often seen in the elderly, and the elderly are less involved in their roles due to aging. Decrease in participation in various roles can cause physical and cognitive problems. Therefore, through systematic review of previous studies, we try to confirm the cognitive improvement and various positive effects of the elderly who participated in various roles.The purpose of this study was to identify the effects, role type, and dependent variables, and outcomes in studies on the role performance occupational therapy for the elderly.MethodThe databases were collected using RISS, RISS, Pubmed, CINAHL, EMBASE, SCOPUS, Web of Science. The studies were selected according to the PRISMA flow chart. Finally, seventeen studies were selected for analysis. The selected seventeen studies was evaluated using the qualitative level model of the evidence‐based study and CASP randomized controlled trial checklist, CASP case control checklist, and CASP qualitative checklist.ResultThere were 6 randomized controlled studies corresponding to level I, and 6 studies satisfied all items of the CASP checklist. Occupational therapy intervention was the most common with 13 studies on the role of self‐caregiver. The roles of hobbyist and organizational member were 9 studies, respectively, and the roles of friend was 7 studies in order. Mental health was the most common evaluation tool for the dependent side to derive the outcome of intervention with 8.Physical health and quality of life evaluation were found to be six each..ConclusionThrough this study, we learned about various roles and occupational therapy interventions that the elderly can play, and we learned evaluation tools that can measure the effectiveness of role performance. In addition, through the evaluation tool, the physical and cognitive effects of role participation, and social participation were known. Role‐oriented occupational therapy intervention should be induced to participate in various roles for the prevention of dementia and cognitive improvement of the elderly.

Quality of Life Analysis in Patients with AA Using the QLQ-AA/PNH-54 at Initial Diagnosis of AA - a Registry Based Analysis

Objectives: Aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) are ultra-rare, acquired bone marrow failure syndromes (BMFS) with need for long-term care and high morbidity despite recent therapeutic advances. There is a lack of disease-specific assessment tools of quality of life (QoL) in AA/PNH patients. So far, QoL has mostly been estimated according to surrogate parameters (e.g. blood counts, transfusion dependence or toxicity of treatment in AA patients) or has been assessed with tools specifically designed for cancer patients (e.g. EORTC Quality of Life Questionnaire QLQ-C30) or with tools focusing on fatigue (e.g. Functional Assessment of Chronic Illness Therapy, FACIT-Fatigue, PNH patients). Therefore, the QLQ-AA/PNH-54 has been developed to allow a patient tailored QoL assessment in patients with AA or PNH. Here, we present the first descriptive data of the QLQ-AA/PNH-54 of 74 AA patients at the timepoint of initial diagnosis collected between 2018 and 2020 (prior to the SARS-CoV-2 pandemic). Methods: The QLQ-AA/PNH-54 was designed, psychometrically validated, and is currently finally validated for PNH within the IPIG (international PNH interest group)-registry. Parallel to this process, the tool was implemented within the Aachen AA/BMF registry as an instrument for real-life QoL evaluation in AA patients. In total, 54 QoL items regarding physical functioning (21 items), psychological aspects (26 items) and health care related issues (7 items) are comprised. Patients rank the occurrence of each item within the last 14 days on a scale between 0 and 3 (0 = did not occur, 1 = low, 2 = moderate, 3 = severe). Results: 74 AA patients (37 female/ 37 male, mean/median/range age 38.42/ 35.47/ 11-73 years) were included. Patients were diagnosed with nsAA (n=11), sAA (n=23), vsAA (n=18), AA NOS (n=20) and AA/PNH-Overlap (n=2), respectively. Broken down into different functional scales, the most frequently and highest rated scales concerned psychosocial aspects (&amp;gt; 60 % of the patients scored 1-3; &amp;gt; 30% of the patients scored 3). Patients were especially burdened by worries and uncertainties with regards to their future, activity planning security and need for cautiousness in everyday life. Tiredness was the major symptom reported in relation to physical functioning. Patients often feared deterioration of their blood results as the most important health care-related issue. In comparison, low occurrence of pain, orthostatic dysregulation, susceptibility for infections, dyspnea, sleep disturbance and tendency to bleed was reported regarding physical functioning (scored 0 by over 40 to over 50 % of the patients). Similarly, low scores were reported for impairment of activities of daily life in terms of completion of household tasks and hobbies or loss of physical attraction. Conclusion: QoL of AA patients at initial diagnosis was mainly impaired by tiredness and a high psychological burden. Interestingly, complications frequently feared and highlighted by treating physicians had a minor impact on patients' QoL. These results emphasize the importance of further QoL analysis from patient view and recommend to especially focus on the psychological burden of AA patients in patient communication at initial diagnosis.

Attitude to the disease and quality of life in elderly patients with mild vascular dementia after the novel coronavirus infection

In order to study the types of attitude towards the disease and quality of life (QoL) in elderly patients with mild vascular dementia (MVD) living in the conditions of the psychoneurological institution Social Service House “Severnoye Izmailovo” in Moscow, there were 2 study groups: the patients with the clinical debut of the novel coronavirus infection (NCVI) of 6 months +/– 1 month with the recovery outcome (n=65; 33 men, 32 women) and those who did not have COVID-19 (hospital control group; n=67; 34 men, 33 women). The mean age of the studied patients was 73.05±3.48 years. The age and sex composition of the two groups was homogeneous (p&gt;0.05). Emotional disorders were investigated using the Cornell Scale for Depression in Dementia (CSDD); cognitive disorders – by means of the Montreal Cognitive Assessment (MoCA); QoL – by the Quality of Life in Alzheimer's Disease scale (QoL-AD): QoL self-assessment (QoL-AD-SR (self-rating)) and proxy QoL rating (QoL-AD-PR (proxy rating)); the type of attitude towards the disease – by the TATD scale (Wasserman L.I. et al., 2005). It was found that COVID-19 aggravates cognitive deficits in patients with MVD (according to MoCA 20.80±0.59 /21.40±0.78 points; p&lt;0.05) in the absence of depression (according to CSDD 1.52±0.50 / 1.52±0.84 points in the group of the patients after NCVI / hospital control group, respectively; p&gt;0.05). In the patients after COVID-19, a correlation was found between the proxy QoL rating and the severity of cognitive dysfunction according to the MoCA (R= – 0.28), while in the hospital control group – between the proxy QoL rating and the severity of depressive manifestations (R= – 0.33). The first group of the patients was characterized by a mixed type of attitude to the disease and intrapsychic maladaptation (the neurasthenic type ranked first at 16.03±8.29 / 9.34±5.03 points), while the second group had a diffuse type of attitude to the disease and interpsychic maladaptation (the sensitive type ranked first at 10.31±5.71 / 14.90±7.62 points by the TATD scale among the elderly patients with MVD who have / have not undergone NCVI; p&lt;0.05). The revealed patterns can contribute to the optimization of personalized models of medical and psychological rehabilitation of elderly patients with MVD living in closed-type care facilities.

Societal and economic burden of dilated cardiomyopathy

Abstract Background/Introduction Dilated cardiomyopathy (DCM) is a major cause of heart failure and can be associated with events like arrhythmias, syncope or sudden cardiac death. Next to the physical disease burden and the mental strain for patients, DCM also poses a substantial economic burden on society; however, respective data is missing. Purpose This study aims to measure the quality of life (QoL) and societal costs of DCM patients. Methods A cross-sectional evaluation of QoL and societal costs of DCM patients was performed through the 5-level EuroQol (EQ-5D-5L) and the Medical Consumption Questionnaire (iMCQ) and Productivity Cost Questionnaire (iPCQ), respectively. QoL was translated into numerical values (i.e. utilities) for statistical analysis. Costs were measured from a Dutch societal perspective including medical costs, patient and family costs, productivity losses and costs in other sectors. Final costs were extrapolated to one year, reported in 2022 Euros, and compared between DCM severity according to NYHA classes. Results A total of 550 DCM patients were included. Mean age was 61 years, and 34% were women. Among EQ-5D dimensions, DCM patients scored lowest in usual activities, pain/discomfort and mobility (Figure 1). Overall utility was lower than the Dutch population mean (0.840 vs. 0.869, p = .225). Total societal DCM costs were €14,843 per patient per year (Figure 2). Cost drivers were productivity losses (€7,037) and medical costs (€4,621) due to inpatient care (€2,231), outpatient care (€863) and medication (€805). Patients with more symptomatic DCM (i.e. NYHA class III or IV) had significantly higher average DCM costs per year compared to less symptomatic DCM (€31,099 vs. €11,446, p &amp;lt; .001) and significantly lower utilities (0.631 vs. 0.883, p &amp;lt; .001). Conclusion DCM is associated with reduced QoL and high societal costs, especially in more advanced disease stages. To our knowledge, this is the first study describing the economic burden of DCM in the Netherlands. More studies in DCM are needed to confirm these results.Quality of life of DCM patientsTotal DCM costs per patient per year

Abstract 17863: Analysis of Social Determinants of Health, Burden of Treatment and Quality of Life in Patients With Heart Failure With Preserved and Reduced Ejection Fraction, a Single Center Study With Six Months Follow Up

Introduction: Heart failure (HF) is a chronic debilitating disease with immense burden on the patient’s life. This study aims to investigate the clinical characteristics, social determinants of health (SDOH), burden of treatment (BoT), and quality of life (QoL) of patients with heart failure with preserved and reduced ejection fraction (HFpEF and HFrEF). Methods: Data from 191 patients (63 HFpEF, 128 HFrEF) were collected from February 2022 to March 2023. Validated questionnaires including SDoH, BoT and QoL were filled by the patient on admission and in 6 months as a follow up. Descriptive statistics were used to compare the demographic and clinical characteristics of HFpEF and HFrEF patients. Inferential statistics, including logistic regression, were used to analyze the associations between SDOH, BoT, QoL, and 30-day readmission rates. Results: Distribution between both groups is similar to the general population. HFpEF patients experienced more interpersonal challenges and reported greater difficulty with self-care and usual activities. HFrEF patients had higher rates of substances, alcohol, and tobacco use. Regarding readmission, HFpEF patients with medication difficulties and HFrEF patients with difficulty accessing healthcare services were more likely to be readmitted. Both HFrEF and HFpEF patients showed significant improvement in SDOH, QoL and BoT in the follow up data (Table 1). Conclusions: The study findings highlight the distinct clinical characteristics, SDOH, BoT, and QoL factors associated with HFpEF and HFrEF. These findings can contribute to targeted interventions and improved patient care. Moreover, the study emphasizes the importance of addressing social and personal factors influencing HF outcomes, aiming to reduce healthcare disparities and improve patient well-being. The results have implications for healthcare providers, policymakers, and researchers in improving the management and outcomes of heart failure patients.

Models of quality of life management in the region: National Social Initiative (on the example of the Republic of Bashkortostan)

The work is devoted to the study of the issue of quality of life management in the region on the basis of a new model presented by the National Social Initiative (NSI), as most consistent with the principle of human-centricity. The purpose of this study is to analyze the improvement of the quality of life of the population in the regions of Russia. The subject of the study is the models of quality of life management of the population in the regions of Russia. The actual basis of the study was made up of data from the Agency for Strategic Initiatives, data from the Quality of Life Rating in the regions of the Russian Federation, materials from the Smarteca digital platform, as well as official materials and data from the Employment Service of the Republic of Bashkortostan. The main constructs and a fragment of parametrization are given. Using the example of the Republic of Bashkortostan, the tools for analyzing and evaluating the quality of life within the framework of the designated model are described, and the results of content analysis of management decisions in the social sphere assigned to the region as the author on the Smarteca platform are also presented. Taking into account the identified problematic points, the current directions of development in the region are highlighted. Based on the analysis of the content of practices already replicated in the region, as well as the analysis of top projects presented on Smartec, some social management practices that are relevant in order to resolve the problems identified in the region are identified.

Экспорт российского образования в механизме «мягкой силы»

The article analyzes Russia’s strategy for creating a positive image of the state, attracting foreign citizens to Russian universities. As part of the study, a survey of citizens from Kazakhstan, China, Uzbekistan studying at universities of the Russian Federation was carried out. It was found that the lower the quality of life in the respondent’s country, the more he has a desire to stay working in Russia, and the higher the material well-being of the respondent, the more he wants to continue studying and working abroad (USA, Canada, etc.). It is revealed that the higher the level of education of students’ parents and the position they hold, that is, the more well-off a student’s family is, the more often he focuses not only on university ratings, but also on quality of life ratings, happiness index, security, investments in human capital, etc. The authors concluded that the majority of foreign citizens tend to enroll to Russian universities on the recommendation of their reference personalities (usually parents, grandparents), who at one time received higher education in the Russian Federation. The results of the study showed that in order for Russia to enter the top five countries where foreign students study the most, it is necessary for the state and business to use the resources of “soft power”, which the author points out in his article.

Quality-of-Life Assessments in Zoo Animals: Not Just for the Aged and Charismatic.

Zoos should aim to provide all of their animals with a good quality of life (QoL) throughout all life stages. In parallel with the evolution of QoL assessment questionnaires and tools in human and domestic animal settings, in recent times, some individual zoos and zoo industry associations have incorporated such instruments into their animal management practices. This has been conducted predominantly to inform, monitor, and document end-of-life decision-making for large, charismatic mammals. There is scope to expand the use of these tools to improve their utility, validity, reliability, and value to an animal welfare program. Assessment of QoL is a complex task given that the notion being measured is abstract and self-determined, and the design and purpose of the tools to do this require careful consideration. This review explores the QoL concept as it applies to animals, the assessment indications and methodologies relevant to a zoo setting, and the importance of considering QoL at any life stage across species. An overview of current thinking and the applications and limitations of QoL evaluation of captive wild animals is offered to promote and aid facility practice reviews and to help direct future innovations that leverage concurrent and converging advances in zoo animal welfare science.

1 Quantity or quality? Comparing objective and subjective participation measures to predict quality of life in aging msTBI.

Objective:Community reintegration and participation have been shown to be significantly correlated to improved Quality of Life (QoL) following moderate to severe traumatic brain injury (msTBI), yet these models often come with significant levels of unaccounted variability (Pierce and Hanks, 2006). Measures for community participation frequently employ objective measures of participation, such as number of outings in a week or current employment status (Migliorini et al., 2016), which may not adequately account for lifestyle differences, especially in aging populations. Less often integrated are subjective measures of an individual’s own belongingness and autonomy within the community (Heineman et al., 2011), also referred to as their participation enfranchisement (PE). The present study examines three questions pertinent to the potential clinical value of PE. First, do measures of objective participation significantly predict an individual’s PE ratings? Second, are both types of measures equally successful predictors of QoL for aging individuals with chronic-stage msTBI. Finally, would controlling for either objective or subjective integration ratings enable neurocognitive assessments to better predict QoL post injury?Participants and Methods:41 older-adults (M= 65.32; SD= 7.51) with a history of msTBI were included (M= 12.59 years post-injury;SD= 8.29) for analysis. Subjective community integration was measured through the Participation Enfranchisement Survey. The Participation Assessment with Recombined Tools-Objective (PART-O) provided the objective measurement of participation. Quality of life was assessed through the Quality of Life after Brain Injury (QOLIBRI). An estimate of neurocognitive performance was created through the Brief Test of Adult Cognition by Telephone (BTACT), which includes six domains including: verbal-learning and memory (immediate and delayed recall), working memory (digit-span backwards), reasoning (number sequencing), semantic fluency (category fluency), and processing speed (backwards counting). Performance on the BTACT, PE ratings, and PART-O scores were included as the dependent variables in stepwise, linear regression models predicting QoL ratings to assess the differential contribution of the dependent variables and potential interaction effects.Results:While both the PART-O (f(1,39)=5.52;p=.024,n2=.124) and the PE survey (f(1,39)=14.31 ;p&lt;.001,n2=.268) significantly predicted QoL, the addition of PE in the PART-O model resulted in significant (20.9%) reduction in unaccounted variance. Further in the model controlling for PE, PART-O no longer provides a significant (p=.15) contribution to the model estimating QoL (f(2,38)=8.41; p=.001). Performance on the BTACT correlated with PART-O (p&lt;.0001), but not PE (p=.13) ratings. Finally, across two models controlling for BTACT performance, PE (p=.002,partial n2=.23), but not PART-O (p=.28,partial n2=.031) contributed significantly to QoL predictions. No significant interactions between PART-O, PE, and/or BTACT were observed when added to any model.Conclusions:MsTBI impacts nearly every facet of an individual’s life, and as such, improving QoL post-injury requires a broad, yet well-considered approach. The objective ratings of participation, subjective PE, BTACT performance, all independently predicted quality of life in this sample. However, after controlling for neurocognitive assessment performance, PE was shown to independently contribute to quality of life, while the PART-O ratings no longer provided significant contribution. While community integration is a vital factor to consider for long-term rehabilitation, tailoring what “integration” means to the patient may hold significant potential to improve long-term quality of life.

Pediatric Tracheostomy: A Quality-of-Life Assessment Study in Saudi Arabia.

The pediatric population undergoes tracheostomy for a variety of reasons. For a child and their family, having a tracheostomy means learning a new way of life and facing several social, psychological, medical, and economic challenges.Our analysis of the literature indicates that this is the first study of its kind, using the Pediatric Tracheotomy Health Status Instrument (PTHSI) tool to assess the quality of life (QoL) following tracheostomy in pediatric patients and their caregivers in the Kingdom of Saudi Arabia (KSA). This was a descriptive cross-sectional study for tracheostomized children's QoL evaluation. The medical records of the Maternity and Children Hospital, Dammam, KSA, were used to identify the patients and their caregivers. A higher score on the validated PTHSI indicated a better result. From a total of 56 patients, 24 were included in this study. Based on the PTHSI tool, the overall mean score was 93.3/150 (62.28%) and this indicated a good QoL score. Analysis of the correlation between the PTHSI score and other variables indicated no association between the total PTHSI score and the age or gender of the patient or the duration of the tracheostomy (p-value > 0.05). However, we found families of children with major medical comorbidities had lower scores (p-value = 0.03) and their QoL was affected much more than families of patients who did not have major medical comorbidities. Tracheostomy care for pediatric patients can significantly affect the QoL of patients and their families. Our findings using the validated PTHSI tool showed poorer QoL compared to other studies, suggesting the need for future home care training programs to support tracheostomized children and their families, particularly those with comorbidities, who tend to have lower QoL scores and require more organized support.

Patient family engagement and partnership: Pilot survey results in assessing behavior, communication, and quality of life in children with Lennox–Gastaut syndrome and other drug-resistant epilepsy

ObjectivesLennox–Gastaut Syndrome (LGS) and other drug-resistant epilepsy (DRE) can impact behavior, communication, and quality of life (QoL). In collaboration with community engagement efforts with the Lennox–Gastaut Syndrome Foundation (LGSF), we aimed to gain an initial snapshot of patient and family perspectives and experiences with evaluation of behavior, communication, and QoL. MethodsA cross-sectional survey was conducted to collect self-reported information from caregivers of children with LGS and other DRE regarding their perspectives and experiences with healthcare providers' evaluation of behavior, communication, and QoL. The survey tool was developed by the study investigators in partnership with the LGS Foundation and had diffused to caregivers online by epilepsy advocacy groups including the Pediatric Epilepsy Surgery Alliance (PESA). Responses were analyzed. Descriptive statistics were calculated. The survey asked for caregiver perspectives and assessed which instruments the caregivers had previously been given for measuring these domains. ResultsResponses from 245 caregivers were included, with 132 (54%) caregivers of an individual with LGS and 113 (46%) caregivers of an individual with non-LGS related DRE. Respondents reported that 66% of their loved ones had undergone epilepsy-related surgery. Over 90% agreed that measuring behavior, communication, and QoL was important, but fewer than half felt that their healthcare providers evaluated these domains well. LGS caregivers largely shared non-LGS caregivers' perspectives; however, they reported more frequently that communication was not evaluated enough. Barriers to measuring these domains included a lack of good surveys (developmentally appropriate and specific to the type of epilepsy) or not receiving any survey instruments for these domains during clinic appointments.Caregivers play a crucial role for individuals with DRE, and their input is essential in identifying challenges and needs. Caregivers believe that measuring behavior, communication, and quality of life is important, and most of them feel that their loved ones are not adequately evaluated during their healthcare encounters. There is a need for appropriately scaled survey instruments to measure areas of importance for patients and caregivers, as well as incorporation of these outcomes in the healthcare discussion.

Impact of Post-Mastectomy Radiotherapy on Cosmesis and Quality of Life after Deep Inferior Epigastric Perforator Flap Breast Reconstruction: A Single Institution Experience

Immediate breast reconstruction (IBR) yields better cosmetic results and reduce psychological distress than delayed (DBR). Literature data showed better local cosmesis after reconstruction autologous flaps than prothesis. Our aim is to compare cosmetic results and quality of life (QoL) after PMRT delivered either after IBR or DBR with DIEP flap. We reviewed files of 99 patients (100 DIEPs) treated in our department from January 2000 to December 2019. Patients were divided into 2 groups depending on the treatment sequence: IBR (n = 22) versus DBR (n = 78) followed by PMRT. All the patients had their DIEP flap by the same surgical team. All patients had cosmetic evaluation using Harvard/RTOG cosmesis grading scale. Fifty percent (32 in IBR and 14 in DBR group) of the patients responded to the QoL evaluation using auto questionnaires and BREAST-Q to evaluate breast specific HRQoL and satisfaction. The analysis of cosmetic scores was carried out with a Chi2 test and the analysis of QoL scores with a student test. Kaplan Meier (log-rank test) is used for recurrence-free and overall survival. Median follow-up was 56 months. Median age of the patients was 48 (28-71). In terms of disease stage: T1-2 (52%), N0 (38%). 86% of the patients had chemotherapy either in neo-adjuvant (26%) or adjuvant (60%) settings. Radiation therapy (RT) delivered a total dose ranged between 45 Gy and 50 Gy using 1.8-2.5 Gy/per fraction. Supra-clavicular and internal mammary chain irradiation was performed in 67% and 33% of the patients respectively. After surgery, 15% had post-operative complications such as DIEP necrosis (n = 8) that delayed RT delivery. Among the 99 patients, 3 died from metastatic evolution and were not included in the cosmetic and QoL analyses. Local recurrence rate was slightly higher after DBR (12.5%) as compared to IBR (3.8%). Loco-regional and metastatic recurrence rates were 4.5% and 4.5% after IBR versus 1.3% and 9% after DBR (p = NS). Disease free and overall survival were 88% and 98% at 5y and 66% and 96% at 10y.Good-to-excellent results were observed in 57% in the IBR vs 67% in the DBR (p = 0.92). There was no impact of previous chemotherapy (p = 0.21), tobacco use at diagnosis (p = 0.27), diabetes (p = 0.86), RT timing (p = 0.53) and endocrine therapy administration (p = 0.67). QoL was evaluated with the BREAST-Q self-evaluation for 5 post operative items: psycho-social, physical, sexual well-being and satisfaction with breast and global cosmetic results. Out of the 99 patients, 46% had responded to the QoL evaluation. We found no statistical difference between the two groups for all the BREAST-Q evaluation items. Our center is considered expert for DIEP reconstructions since its development in end of the nineties. Our data showed no impact PMRT using conventional fractionation (with mainly 1.8 Gy/fraction) on cosmetic results, QoL, and patients' satisfaction regardless of the timing of the breast reconstruction. Additional studies are in progress with updates.

Quality of life and societal costs in patients with dilated cardiomyopathy.

Dilated cardiomyopathy (DCM) is a major cause of heart failure impairing patient wellbeing and imposing a substantial economic burden on society, but respective data are missing. This study aims to measure the quality of life (QoL) and societal costs of DCM patients. A cross-sectional evaluation of QoL and societal costs of DCM patients was performed through the 5-level EuroQol and the Medical Consumption Questionnaire and Productivity Cost Questionnaire, respectively. QoL was translated into numerical values (i.e. utilities). Costs were measured from a Dutch societal perspective. Final costs were extrapolated to 1 year, reported in 2022 Euros, and compared between DCM severity according to NYHA classes. A total of 550 DCM patients from the Maastricht cardiomyopathy registry were included. Mean age was 61 years, and 34% were women. Overall utility was slightly lower for DCM patients than the population mean (0.840vs. 0.869, P=0.225). Among EQ-5D dimensions, DCM patients scored lowest in 'usual activities'. Total societal DCM costs were €14 843 per patient per year. Cost drivers were productivity losses (€7037) and medical costs (€4621). Patients with more symptomatic DCM (i.e. NYHA class III or IV) had significantly higher average DCM costs per year compared to less symptomatic DCM (€31 099vs. €11 446, P< 0.001) and significantly lower utilities (0.631vs. 0.883, P< 0.001). DCM is associated with high societal costs and reduced QoL, in particular with high DCM severity.

Quality of Life in Patients Undergoing Surgery for Upper GI Malignancies.

Upper gastrointestinal (GI) conditions vastly affect each individual's physical, social, and emotional status. The decision-making process by the medical personnel about these patients is currently based on a patient's life quality evaluation scale, HRQL scales. By utilizing HRQL scales, a better understanding of the various surgical and non-surgical treatment options, as well as their long-term consequences, can be achieved. In our study, an organ-based approach is used in an attempt to examine and characterized the effect of upper GI surgery on HRQL. Therefore, HRQL scales' function as a prognostic tool is useful, and the need for future research, the creation of valid training programs, and modern guidelines is highlighted.

Improved Glycaemic and Weight Management Are Associated with Better Quality of Life in People with Type 2 Diabetes Treated with Tirzepatide.

Limited data are available on the relationship between quality of life (QoL) change and significant degrees of reduction in glycated haemoglobin (HbA1c) and/or weight loss in people with type 2 diabetes (T2D). We explored the associations between HbA1c targets and/or weight loss achieved and patient-reported outcomes (PROs) in adults with T2D treated with tirzepatide, a first-in-class once weekly glucose-dependent insulinotropic polypeptide and glucagon-like peptide-1 receptor agonist, using pooled data from SURPASS-1 to -5 Phase 3 clinical trials. PROs were assessed using five instruments at baseline and endpoint (Week 40 in SURPASS-1, -2 and -5; Week 52 in SURPASS-3 and -4): Impact of Weight on Quality of Life-Lite Clinical Trials Version; Impact of Weight on Self-Perception (IW-SP) questionnaire; Ability to Perform Physical Activities of Daily Living (APPADL); Diabetes Treatment Satisfaction Questionnaire change; and EQ-5D-5L. All PROs were assessed in participants receiving pooled doses of tirzepatide (5, 10 or 15mg) and achieving HbA1c targets of < 5.7%, ≥ 5.7-≤ 6.5% and > 6.5% or achieving ≥ 0-< 5%, ≥ 5-< 10%, ≥ 10-< 15% and ≥ 15% weight loss from baseline at endpoint. The APPADL, IW-SP and EQ visual analogue scores were evaluated in participants achieving each combination of HbA1c target and weight loss. Achievement of lower HbA1c targets or higher body weight percentage losses were each associated with greater improvements in QoL than achievement of higher HbA1c targets or lower body weight percentage losses, respectively. Achievement of lower HbA1c targets in combination with greater weight loss was generally associated with the best QoL ratings. Our findings demonstrate that HbA1c targets and significant percentage body weight reduction thresholds need to be achieved for people with T2D to help substantially increase their overall health-related QoL. Tirzepatide treatment may allow a high proportion of people with T2D to achieve these targets, enabling improved QoL. SURPASS-1: NCT03954834; SURPASS-2: NCT03987919; SURPASS-3: NCT03882970; SURPASS-4: NCT03730662; SURPASS-5: NCT04039503.

Association Between Self- and Proxy-Reported Depression and Quality of Life in Mild-Moderate Alzheimer's Disease

Prior studies have reported an association between depression and quality of life (QOL) in Alzheimer's disease (AD), but the effect of self- versus proxy rating of mood and QOL has not been described. In this secondary analysis of data from a cohort study, the authors used a linear mixed-effects model to determine if the association between depression and QOL is affected by whether both measures are assessed by the same member of the patient-caregiver dyad. Participants and caregiver informants were recruited from 10 California Alzheimer Disease Centers. A total of 137 participants with mild-to-moderate Alzheimer's disease and their caregivers. Self- and proxy-rated scores on both the Geriatric Depression Scale (GDS) and the Quality of Life in Alzheimer's Disease scale (QoL-AD). Multivariable linear mixed-effects models were used to estimate the association between depression and QOL. Results of the multivariable linear mixed-effects models showed a significant association between self-rated QoL-AD and self-rated (B=-0.49, p <0.0001) but not proxy-rated GDS (B=-0.07, p=0.19) after adjusting for confounders. Likewise, there was a significant association between proxy-rated QoL-AD and proxy-rated GDS (B=-0.48, p <0.0001) but not self-rated GDS (B=0.05, p=0.36). Depression was associated with QOL in AD over short-term longitudinal follow-up, but the association was not statistically significant if both instruments are not administered to the same member of the patient-caregiver dyad. The choice of self- versus proxy-reported QOL should be intentionally considered in future studies as it may influence reported outcomes.