Perceived Quality Of Life Research Articles

Individuals with stroke three months after hospital discharge reported worse quality of life during the COVID-19 pandemic

PurposeTo compare quality of life (QOL) of individuals with stroke three months after hospital discharge, using generic and specific QOL measures, before and during the COVID-19 pandemic. MethodsIndividuals, who were admitted to a public hospital, were recruited and evaluated before (G1) and during (G2) the COVID-19 pandemic. The groups were matched for age, sex, socio-economic status, and levels of stroke severity (National Institutes of Health Stroke Scale) and functional dependence (Modified Barthel Index). After three months of hospital discharge, they were evaluated and compared using generic (Short-form Health Survey 36: SF-36) and specific (Stroke Specific Quality of Life: SSQOL) QOL measures. ResultsSeventy individuals were included (35 in each group). Statistically significant between-group differences were found for both total SF-36 (p=0.008) and SSQOL (p=0.001) scores, indicating that individuals reported worse QOL during the COVID-19 pandemic. Furthermore, G2 also reported worse generic QOL related to the SF-36 domains of physical functioning, bodily pain, general health perception, and emotional role limitations (p < 0.01) and worse specific QOL related to following SSQOL domains: Family roles, mobility, mood, personality, and social roles (p < 0.05). Finally, G2 reported better QOL related to energy and thinking (p < 0.05) SSQOL domains. ConclusionIn general, individuals with stroke, who were evaluated during the COVID-19 pandemic three months after hospital discharge, reported worse perceptions of QOL in several domains of both generic and specific QOL measures.

Quality of life among Iranian major depressive disorder patients: a qualitative study

BackgroundResearch indicates that the prevalence of Major Depressive Disorder (MDD) is high and it reduces patient’s Quality of Life (QoL). Nowadays, in addition to reducing the symptoms of MDD, emphasis is on the concept of QoL as the purpose of treating these patients. However, we still do not know what these patient’s attitudes and perceptions are about QoL. This study aims to clarify the Iranian patient’s attitudes and perceptions of QoL’s meaning through a qualitative paradigm.ResultsDuring the data analysis, “Agitation factors”, “Destructive effects”, and “Gratifications” were developed as three main themes with 13 main categories, 39 sub-categories, and 879 codes. According to the findings the main priority of patients with MDD was Agitation factors, which plays a remarkable role in the concept of QoL.ConclusionsMDD leads to deterioration in the QoL of these individuals in different parts. The novelty of this study leads to the creation of a deep and realistic attitude in national and global nurses towards the QoL of majorly depressed patients in order to remove the aggravating factors of the disorder and create a pleasant life based on the adequate and specialized understanding of the consequences of this disorder according to the preferences of patients and provide a suitable quality of life for these patients.

Impact of COVID19 pandemic on patients with rare diseases in Spain, with a special focus on inherited metabolic diseases

IntroductionThe Covid-19 pandemic soon became an international health emergency raising concern about its impact not only on physical health but also on quality of life and mental health. Rare diseases are chronically debilitating conditions with challenging patient care needs. We aimed to assess the quality of life and mental health of patients with rare diseases in Spain, with a special focus on inherited metabolic disorders (IMD). MethodsA prospective case-control study was designed, comparing 459 patients suffering from a rare disease (including 53 patients with IMD) and 446 healthy controls. Quality of life (QoL) and mental health were assessed using validated scales according to age: KINDL-R and the Pediatric Symptom Checklist (PSC) for children and the WhoQoL-Bref questionnaire, GAD and PHQ-9 in adults. ResultsFirst, children and adults (but not adolescents) with IMD showed greater psychological effects than controls (p = 0.022, p = 0.026 respectively). Second, when comparing QoL, only adult patients with IMD showed worse score than controls (66/100 vs 74,6/100 respectively, p = 0.017). Finally, IMD had better quality of life than other rare neurological and genetic diseases (p = 0.008) or other rare diseases (p < 0.001 respectively) but similar alteration of the mental status. ConclusionsOur data show that the pandemic had a negative impact on mental health that is more evident in the group of patients with IMD. Young age would behave as a protective factor on the perception of QoL. Furthermore, patients with IMD show a better QoL than other rare diseases.

Subjective Quality of Life of Women in the Perinatal Period: A Post Covid-19 Pandemic Exploration in North Macedonia.

Subjective quality of life could be considered one of the indicators of health behavior and wellbeing of women in the perinatal period. Accordingly, the aim of this paper was to examine how women in perinatal period perceive quality of life in various domains. Its relationship to age, number of pregnancies, course of pregnancies, and method of delivery and experience with Covid-19 pandemic was investigated, as well. Our sample consisted of 366 pregnant women in any period of pregnancy who came in for regular outpatient examinations and control, those who were hospitalized due to pathological pregnancy or due to the need for intensive care, as well as women in their postnatal period, one year after delivery, who were seeking professional advice from a gynecologist. The majority were aged 20 to 30 years (53.8%). The findings showed that assessed domains of subjective quality of life were related to a variety of experiences with the Covid-19 pandemic. The results are presented and discussed in detail. Implications and limitations are given, as well.

Quality of life in survivors of pediatric medulloblastoma: a systematic review and meta-analysis.

Medulloblastoma (MB) is the most common malignant pediatric brain tumor. The mainstay of treatment is maximum surgical resection and craniospinal radiation, which may be followed by chemotherapy. The debilitating effect of the tumor and the intensive treatment approaches in MB lead to long-term neuropsychological, physical, and chronic medical problems. We conducted a systematic review to assess the quality of life (QoL) in the long-term survivors of MB and the factors leading to compromised QoL. We utilized the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for our review. A comprehensive literature search was performed using PubMed, Cochrane Library, Digital Commons Network, and Wiley Online Library databases to search for articles having quality of life, medulloblastoma, and pediatric survivors in title or abstract. We removed duplicates and screened through titles, and full texts. Twelve articles were included in our study. Articles using and reporting all domains of PaedsQL were included in the meta-analysis. The PaedsQL scores of survivors and their caregivers were compared. Subgroup analysis was conducted for craniospinal and proton radiotherapy groups. As compared to other posterior fossa tumors, MB survivors have the lowest QoL scores. There is a difference in the perception of QoL of survivors between caregivers and survivors themselves with survivors rating themselves higher in several domains. The overall PaedsQL scores were significantly different for both groups (p < 0.001). Subgroup analysis showed that the difference between those who were treated with craniospinal or proton radiation was not significant (p = 0.76). For the subscales, physical (p = 0.005), psychosocial (p = 0.0003), and school (p = 0.03) perceptions were significantly different for the survivors and their caregivers; however, psychosocial (p = 0.80) and emotional (p = 0.93) scales were not different for the survivors or caregivers. Patient characteristics related to a worse QoL included disease severity, metastatic disease, lesser family income, smaller current ventricle size, need for permanent hydrocephalus treatment, and lesser age at diagnosis. An analysis of various studies, using different measures of QoL, concludes that QoL is compromised in all pediatric survivors of MB; however, the perception of QoL of the survivors is better than objective or caretaker-rated QoL.

“INTEGRO INTEGRated Psychotherapeutic InterventiOn” on the Management of Chronic Pain in Patients with Fibromyalgia: The Role of the Therapeutic Relationship

Fibromyalgia (FM) is a chronic disease characterized by a heterogeneous set of physical and psychological conditions. The chronic experience of disability felt by patients and the impact on quality of life (QoL) of the disease may worsen the cognitive reappraisal ability and contribute to maintaining an altered pain modulation mechanism. This paper presents the study protocol of an INTEGRated psychotherapeutic interventiOn on the management of chronic pain in patients with fibromyalgia (INTEGRO). The aim of the study is to investigate the efficacy of an integrated psychotherapeutic intervention focused on pain management on QoL and pain perception, in a pilot sample of 45 FM patients with idiopathic chronic pain. The contribution of perceived therapeutic relationship (alliance) and physiological attunement, in both the patient and therapist, will be considered as possible mediators of intervention efficacy. Attachment dimensions, traumatic experiences, difficulties in emotion regulation, mindfulness attitude and psychophysiological profile will also be considered as covariates. The objectives are to evaluate longitudinally if patients will experience an increase in QoL perception (primary endpoint), pain-managing self-efficacy and emotion-regulation abilities as well as a reduction in pain intensity (secondary endpoints), considering the mediating role of perceived therapeutic alliance and physiological attunement in both the patient and therapist.

Time from injury and age interact in relationship with perceived quality of life outcomes following vocation-focused neuropsychological rehabilitation.

At the group level, community-based neuropsychological rehabilitation interventions with a vocational focus are generally effective among individuals with brain injuries. However, individual participants vary significantly in the extent of their improvement, prompting attempts to elucidate individual, injury-related, and environmental factors affecting prognosis. In this study, we examined the relationships between one such factor - "time from injury" (the time between injury and intervention) - and two outcome measures: employment status and perceived quality of life (PQoL), in 157 brain injury survivors, before and after a holistic neuropsychological vocational rehabilitation program. We also examined whether relationships between the variables were moderated by age at onset of treatment and injury severity. In the entire sample, both the proportion of employed participants and average PQoL increased following program participation. Neither, time from injury, severity, nor age at onset of treatment predicted the increase in employment proportion, and severity was not a significant predictor of PQoL. However, an interactive effect indicated that when treatment was started at a younger age, longer time from injury predicted higher levels of PQoL, but when treatment was started at older ages, longer time from injury predicted lower levels of PQoL. When interpreted alongside existing literature, these results suggest that delaying vocational components of rehabilitation can be beneficial for younger participants, while the effectiveness of vocational rehabilitation can be maximized by starting as early as possible among older participants. Most importantly, regardless of age, it appears that vocational rehabilitation can be effective even when initiated many years after injury.

Chronic Vulvar Pain and Health-Related Quality of Life in Women with Vulvodynia.

The aim of this study was to investigate the severity of chronic vulvar pain in women with vulvodynia and its impact on their health-related quality of life (QL). The study group consisted of 76 women aged 19 to 58. The study was carried out using the diagnostic survey method, i.e., (1) the questionnaire technique, comprising (A) the author's questionnaire (76 questions) and (B) the WHOQOL-BREF questionnaire, and (2) the VAS. When analyzing the severity of vulvar pain on the VAS, the highest proportion of women rated it at level 6 (23.68%). This was significantly determined by certain personal characteristics (age < 25 years old) and sociodemographic characteristics (marital status: unmarried women, divorcees, widows; high school education), each at p < 0.05. Vulvodynia causes a significant deterioration (64.47%) in QL, which is mainly caused by a reduction in the ability to perform activities of daily living (27.63%) and a decrease in sexual satisfaction (27.63%). The level of stress significantly exacerbates pain (p < 0.05). The severity correlates significantly (p < 0.05) and negatively (r < 0) with QL perception, which was rated worst in the physical domain. The use of treatment resulted in a significant improvement in the physical and psychological domains (p < 0.05), and the latter was particularly influenced by physiotherapy (p < 0.05).

Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey.

Four structured, validated questionnaires were utilised: sociodemographic, WHOQOL-bref, Zarit Burden Interview, and Functional Independence Measure Scale in 60 anonymous volunteered respondents. The informal caregivers were middle-aged mothers (81.7%), married (55%), stay-at-home spouses (60%) with high school degrees (51.6%), providing a care for their relatives with special needs for more than 20 years (41.8%). Most of the PSN were diagnosed with autistic spectrum disorder (ASD, 61.8%), had a wide spectrum of intellectual deficits, and required constant support for their basic needs. They were mainly adolescent males without physical limitations (83.4%) on disorder-specific medications (90%). The study revealed that those caregivers had a median perception of QoL considering four essential domains, with a highest score recorded for the physical domain (64.3 +/- 16.1 SD). A moderate burden level prevailed, revealing neither a correlation between the workload expressed by caregivers and the patient's functional capacity, nor in the performance of daily self-care tasks (Spearman correlation test p > 0.05), apart from the environmental domain (mild correlation = 0.335, p < 0.05). The reported average level of overload associated with QoL of informal caregivers exists, affecting a vast proportion of the respondents. The absence of a direct association between workload and the functional capacity/daily self-care tasks can be related to the significant personal dedication of family caregivers, regardless of their socioeconomic status.

Siblings of children with intellectual and developmental disabilities: Quality of life perceptions from Catalonia

AbstractSiblings' interactions and shared experiences influence their perceptions of quality of life. Recently, research about siblings of children with intellectual and developmental disabilities has been significantly expanded but data from Southern European countries is still missing. This research was carried out in Catalonia (northeast Spain) a region in the Mediterranean area with its own shared culture, language and traditions that equally embraces an important diversity of ethnicities and cultures. The main aim was to collect siblings' perceptions on quality of life from siblings' own voices. Semi‐structured interviews were conducted with 14 siblings aged 5–11 years old and thematically analyzed using the following domains: joint activities; mutual understanding; private time; acceptance; forbearance; trust in well‐being; exchanging experiences; social support; and dealing with the outside world. Siblings reported a variety of experiences in relation to having a brother or a sister with intellectual and developmental disabilities (I/DD), including unique characteristics of their quality of life perceptions. There were also some common factors amongst the siblings' experiences, such as the importance of being able to communicate properly with their brothers or sisters with I/DD. It emerged that having their own time with their parents was an important factor in their own development. This research echoes some siblings' beliefs that society needs to provide a conscious revision of values and ideas regarding disability. Implications for research and practice are described.

Quality of life in Norwegian pregnant women and men with pregnant partners, and association with perception of sleep and depressive symptoms: a cross-sectional study

BackgroundPregnant women and men with pregnant partners experience variations in quality of life (QoL) during pregnancy, a period characterized by physical, psychological, and social changes. Pregnancy is associated with reduced QoL, depressive symptoms, and sleep problems. This study aimed to: (1) determine whether Norwegian pregnant women and men with pregnant partners differed in QoL levels in the third trimester of pregnancy; (2) determine whether the relationship between perception of sleep and QoL is moderated by depressive symptoms, when analyzed separately in pregnant women and men with pregnant partners; and (3) determine whether selected possible predictive factors were associated with QoL when stratified by level of depressive symptoms, in pregnant women and men with pregnant partners separately.MethodsA cross-sectional study conducted between October 2018 and January 2020 included 228 pregnant women and 197 men with pregnant partners in the third trimester of pregnancy. The age range was 22–50 years. QoL was assessed using the World Health Organization Quality of Life Questionnaire brief version, depressive symptoms using the Edinburgh Postnatal Depression Scale, and perception of sleep by a single item. Data were analyzed in SPSS version 28 using descriptive statistics, the PROCESS macro for moderation analyses, and multivariate linear regression. The level of statistical significance was p < 0.05.ResultsPregnant women reported significantly lower QoL scores on the physical health and psychological domains than the men with pregnant partners. Our data did not reveal any moderating effect of depressive symptoms on the relationship between the perception of sleep and QoL. Depressive symptoms in the pregnant women were found to be a significant predictor of lower QoL in all domains. In the men with pregnant partners, getting enough sleep was a significant predictor of higher QoL in all domains. In the pregnant women without depressive symptoms, higher QoL in the physical health domain was significantly associated with the perception of getting enough sleep.ConclusionWomen in the final trimester of pregnancy experience poor QoL compared to the men with pregnant partners. Pregnant women with depressive symptoms have lower QoL compared to those without depressive symptoms. The perception of getting enough sleep was associated with better QoL.

Nutrition Habits and Self-Assessment of Health and Quality of Life Among Women from the Kraków Community Participating in the "Healthy Active Senior” Programme

Background: Healthy food choices are among the factors contributing to health, and therefore, a better quality of life at each stage of ontogenesis. The aim of the study was to assess correlations of eating habits with self-rated health and quality of life (QOL) in women participating in the Healthy Active Senior project at the University of Physical Education in Kraków, Poland. Methods: The study was conducted in September 2019 among 201 women aged 60-85 (66 5) using the Questionnaire of Eating Behaviour (QEB) and the WHOQOL-BREF questionnaire. Statistical analysis was performed using Spearman’s rank correlation coefficients (Spearman’s rho), with a significance level set at p&lt;0.05. Results: The study demonstrated that the inclusion of unsweetened foods such as beverages and dairy products as snacks and a preference for baking/roasting as a method of heat treatment of meat led to an increase in self-rated health (p&lt;0.01). On the other hand, overall health assessment decreased (p&lt;0.01) with the consumption of sweetened beverages and sweetened dairy products, and adding salt to ready-made meals or sandwiches. Furthermore, with regular consumption of meals, including unsweetened beverages and dairy products as snacks, and a preference for baking/roasting as a method of heat treatment for meat and consuming wine among alcoholic beverages, the overall perception of quality of life increased (p&lt;0.01). In contrast, choosing sweet snacks and the preference for flavoured water led to a decrease in the overall self-rated QOL (p&lt;0.01). Conclusions: Healthy food choices are associated with an increase in the general perception of health and quality of life while choosing unhealthy foods is related to a decrease in the overall perception of health and QOL in senior women.

The Post-treatment Impact on Quality of Life, Body Image, and Occupational Concerns among Head and Neck Cancer Patients

Introduction: Head and Neck Cancer (HNC) is the sixth most common cancer across globe, more common in Asian countries. HNC patients are at a significant risk of developing body image and functionality-related concerns, which in turn impact their overall Quality of Life (QoL). This study provides factual insights into the QoL of Indian male HNC patients three months after completing their treatment. Aim: To assess patients’ perceptions of self and overall QoL in context of body image and occupation. Materials and Methods: This mixed-method study included 32 male HNC patients and was conducted at a tertiary cancer centre in Ahmedabad, India, from March 2022 to April 2022. Patients who underwent surgery, with or without radiation therapy or chemotherapy, were included. The Functional Assessment of Chronic Illness Therapy-Head and Neck version (FACT-HN) and the Body Image Scale (BIS) were used as assessment tools. Qualitative responses were also recorded by the interviewer. Statistical analysis was performed using Statistical Package for Social Sciences (SPSS) version 23.0, including both parametric and non parametric tests. Results: The mean age was 45.50 years. The overall QoL of the HNC population was found to be positive, with a mean score of 117.88±12.72. Higher scores indicated better QoL (total score range: 0-148). Similar trends were observed across all domains. Analysis of variance was conducted for three groups: ‘3-11 months’, ‘1-3 years’, and ‘more than three years’. A significant difference in mean HNC scores between these groups (p-value=0.004) was observed, with ‘3-12 months’ (mean=108) and ‘more than three years’ (mean=124.6) showing notable differences. QoL between these two groups was compared using the Kruskal-Wallis test, revealing significant differences in their physical, social, and HNC-specific index (HNCS). Approximately 43% of patients reported returning to work within 3-4 months post-treatment, while 46% experienced reduced work hours due to concerns related to functionality and appearance. Conclusion: This data highlights the subjective impact of physical, social, and head and neck-specific QoL issues on patients, particularly in the immediate post-treatment phase, which may persist for upto three years in some cases. Over time, patients’ overall QoL improves post-treatment.

Composite measures of motor performance and self-efficacy are better determinants of postural instability and gait difficulties than individual clinical measures in Parkinson's disease

BackgroundPostural instability and gait difficulties (PIGD) are a significant cause of disability and loss of quality of life (QoL) in Parkinson's Disease. Most research on clinical predictors of PIGD measures have focused on individual clinical often motor performance variables, However, PIGD motor features often result in fear of falling (FoF) lowering a patient's mobility self-efficacy. The purpose of this study was to assess composite measures of motor and self-efficacy determinants PIGD motor features in PD and compare these to analysis of individual clinical metrics. Methods75 PD participants underwent detailed motor and non-motor test batteries. Principal component analysis (PCA) was used to identify clusters of covarying correlates of slow walking, imbalance, falls, freezing of gait, FoG and compare these to traditional univariate analyses. ResultsA single PCA-derived composite measure of motor performance and self-efficacy of mobility was the most robust determinant of all PIGD motor features except for falls. In contrast, analysis of the individual clinical variables showed more limited and diverging findings, including evidence of better cognitive performance but more severe motor parkinsonian ratings in the fall group. ConclusionThere are robust associations between composite measures of motor performance and self-efficacy of mobility and all PIGD motor features except for falls. Univariate analysis of individual clinical measures showed limited correlates of PIGD motor features. Patient's own perception of motor performance, FoF, and QoL deserve more attention as PIGD therapeutic targets in PD.

Quality of life of patients and caregivers affected by bronchopulmonary dysplasia: a systematic review.

To synthesize evidence on the impact of bronchopulmonary dysplasia (BPD) on the Quality of Life (QoL) of affected individuals from three perspectives: (i) QoL of caregiver; (ii) caregiver's perception of BPD patient's QoL; and (iii) BPD patient's self-reported QoL. Quantitative studies (case-control, cohort, and case series) on the QoL of BPD patients or their caregivers were considered. We conducted a systematic literature search of 6 databases (PubMed, Embase, World of Science, CINAHL, PsycINFO, and Chinese National Knowledge Infrastructure) for relevant studies. All databases were searched from the date of inception of the databases to 31 March 2022. Populations of interest were caregivers with preterm babies with BPD, or children/adults who were born premature and diagnosed with BPD. The main outcome measures were total and subdomain QoL scores, and factors affecting QoL. A total of 1078 articles were found; 10 were eligible for analysis, which included 247 caregivers and 1632 patients with BPD. The QoL of patients differed by domains-some were poorer or similar, but none of the QoL domains was better than QoL of healthy controls. Poor sleep and acute care needs of BPD patients negatively affected caregiver's QoL, while increasing illness acuity negatively affected the QoL of BPD patients. The QoL of BPD patients and their caregivers was most adversely affected during the immediate post-discharge period and tended to improve with time. The physical QoL of BPD patients was similar to that of preterm babies without BPD when assessed during late childhood and early adulthood. QoL assessment should be performed as an outcome measure and incorporated in the care plan for BPD patients and their caregivers. Systematic Review Registration PROSPERO CRD42021292253.

Quality-of-Life Perception among Young Residents and Visitors: The Impact of COVID-19

This research intends to measure the quality of life (QoL) perception, from the perspective of residents and tourists towards Coimbra, a city with an important World Heritage Site, as classified by UNESCO. In these times, preserving tangible and intangible heritage is so important for future memories. Identifying the QoL perceptions through the eyes of residents and tourists allows the improvement of the community well-being of the destination for both stakeholders. Starting from this assumption, this study aims to: (i) measure the tourists’ and residents’ perceptions on quality of life (QoL); (ii) analyze the impact of the COVID-19 pandemic on QoL perceptions, both from the tourists’ and residents’ perspective. To achieve these objectives, a questionnaire was disseminated to residents and tourists in two different phases, before and during the COVID-19 pandemic. Results show that in general, residents and tourists exhibited, in both periods, medium and high perceptions of QoL, with an exception made for the Urban Issues domain that decreased even more during the pandemic. Furthermore, the results show, for residents and tourists, that the perception of Urban Issues, Way of Life, Community Pride and Awareness, Economic Strength, and Recreation Amenities impact significantly and positively their Community Well-Being perception. New paths for academics and for practitioners are presented at the end, as well as limitations and evidence for future research.

The effect of patient characteristics on illness perception and sun protection behaviors in melasma.

Melasma, a significant cosmetic problem, has been accepted by some authors as a photoaging illness in recent times. There is no published study evaluating the effects of the clinical and sociodemographic findings on illness perception and sun protection behaviors (SPBs) in patients with melasma. Sociodemographic data, personal characteristics, and clinical features of 150 patients with melasma were recorded in this cross-sectional study. They were analyzed for their SPBs in three groups as "never," "rarely/sometimes," and "often/always." Patients completed the Melasma Quality of Life (QoL) Scale and Revised-Illness Perception Questionnaire. Melasma patients with higher clinical severity and Qol scores, lower education level, concomitant chronic illness, and a history of previous melasma treatment thought more frequently that melasma had negative serious consequences. Majority of the patients blamed sun exposure as the cause of the melasma. However, SPBs were more frequent only in patients with higher socioeconomic and educational levels, a previous history of melasma treatment, and evaluating their disease as a chronic condition. Neither Qol nor clinical severity score had a significant effect on sun exposure causal attribution or SPBs. No significant effect of patients' perception of melasma was determined on the use of sunscreen or protective hat. Being aware of the factors affecting the perception of melasma and QoL of patients might be helpful in making persistent individual recommendations for the regulation of SPBs.

Quality of Life, Anxiety and Depression in Women Treated with Hysteroscopic Endometrial Resection or Ablation for Heavy Menstrual Bleeding: Systematic Review and Meta-Analysis of Randomized Controlled Trials.

Background and Objectives: Hysteroscopic endometrial resection (ER) or global endometrial ablation (GEA) are feasible methods to treat heavy menstrual bleeding (HMB). The aim of this systematic review and meta-analysis of randomized controlled trials (RCTs) was to assess patient's quality of life (QoL) in women treated with ER/GEA compared to hysterectomy. Materials and Methods: Electronic searches in MEDLINE Scopus, ClinicalTrials.gov, EMBASE, PROSPERO and Cochrane CENTRAL were conducted from their inception to July 2022. Inclusion criteria were RCTs of premenopausal women with HMB randomized to conservative surgical treatment (ER/GEA) or hysterectomy. The primary outcome was the evaluation of QoL using the SF-36 score. Results: Twelve RCTs (2773 women) were included in the analysis. Women treated with hysteroscopic ER/GEA showed significantly lower scores for the SF-36 general health perception (mean difference (MD) -8.56 [95% CI -11.75 to -5.36]; I2 = 0%), social function (MD -12.90 [95% CI -23.90 to -1.68]; I2 = 91%), emotional role limitation (MD -4.64 [95% CI -8.43 to -0.85]; I2 = 0%) and vitality (MD -8.01 [95% CI -14.73 to -1.30]; I2 = 74%) domains relative to hysterectomy. Anxiety, depression scores and complication rates were similar between treatments. Relative to uterine balloon therapy, amenorrhea was more common with EA/GER (relative risk 1.51 [95% CI 1.03 to 1.20] I2 = 28%), but posttreatment satisfaction was similar. Conclusions: Women's perception of QoL might be seen to be less improved after hysteroscopic ER/GEA rather than hysterectomy. However, such findings need to be confirmed by additional trials due to the high number of outdated studies and recent improvements in hysteroscopic instrumentation and techniques.

Patients Reported Outcomes (PROs) Are Still Unsatisfactory Among AML Long-Term Survivors: The Impact of Chronic GvHD in a Prospective Study on 15 Years Transplant Activity

Background Acute myeloid leukemia (AML) represents the main indication to allogeneic hemopoietic stem cell transplantation (HSCT) and improvement of overall survival (OS) has been a major achievement provided by this treatment option. Unfortunately, graft-versus-host disease (GvHD) still represents the main complication affecting HSCT, increasing transplant related mortality (TRM) and worsening quality of life (QoL). While the mortality impact of GvHD is well recognized, the impact on QoL is still poorly characterized. The collection of patients reported outcomes (PROs) in routine practice is limited. The most common PRO measures used are the Lee chronic GvHD (cGvHD) symptom scale, the FACT-BMT and the NIH Form B. We aimed to analyze the perception of QoL in AML long-term survivors after HSCT according to the FACT-BMT scale. Methods Our analysis consisted of a prospective single-center study in a cohort of 510 patients affected by either de novo AML or secondary AML and treated with HSCT between January 2004 and December 2019 at our Institute. Data were censored April 1st, 2022. The follow-up was performed according with our Long Term Follow Up institutional program. The FACT-BMT questionnaire was administered as a paper questionnaire. A written consent was given in accordance with the Declaration of Helsinki. Results Overall, the 2-year OS was 51% and the 5-year OS for patients alive at 2 years was 80% (95% CI - 74-85%). For patients alive and in complete remission at 2 years post-HSCT the probability of 5-year OS was 84.5% (95% CI - 78-89,2%), the 5-year TRM 6.3% (95% CI - 0.5-23.3%) without evidence of a "plateau” effect, while the 5-year relapse incidence was 12.91% (95% CI - 4.91-24.91%) reaching a plateau. Both univariate and multivariate analysis showed that age and status of disease at transplant have a significant impact on long-term survival; univariate analysis instead did not show any impact of the year of treatment and of GvHD prophylaxis. Overall, among 195 patients alive and in complete remission at last follow-up, 70 patients completed the questionnaire. PROs analysis confirmed a better perception of QoL for patients that did not experience cGvHD versus patients affected by cGvHD; no difference emerged according to age and time after transplant. Of note, patients affected by cGvHD showed worst functional well-being (p 0.0293), worst physical well-being due to side effects (p <0.0001), less satisfaction about the appearance of their body (p 0.0152) and less satisfaction about their sexual life (p 0.0445 - 10 patients preferred not to answer). Overall, among patients without cGvHD, other side effects after HSCT were not perceived worse than they had imagined, while among those with cGvHD, most patients complained about this perception (p 0.0009). Conclusion QoL in patients cured from AML by HSCT is still far from being satisfactory, most of all among patients with cGvHD. Dedicated counselling and support to address QoL is a relevant unmet medical need. Systematic evaluation of PROs will optimize the care of HSCT survivors, potentially enhancing patient-provider communication and allowing the development of measure for both prevention and treatment of GvHD.

Shedding Light on the Lifestyle and Participation of Portuguese Adolescents with Chronic Conditions-Data from the HBSC 2018 Study.

Variables associated with lifestyle can constitute either risk or protective factors for the development and progression of chronic conditions (CC). This study intends to explore the differences between adolescents with and without CC and between adolescents whose school participation is affected/not affected by the existing CC with regard to variables related to lifestyle (i.e., sleep, physical activity, BMI, and leisure). In addition, it also intends to analyze the influence of these variables (i.e., CC and lifestyle) regarding the adolescents' quality of life (QoL). This work is part of the Portuguese HBSC 2018 study. A total of 8215 adolescents participated (52.7% female), with an average age of 14.36 years (SD = 2.28). The results showed that the adolescents with CC and whose school attendance and participation are affected by their CC exhibit more sleep difficulties (i.e., they experience lower sleep quality and have a higher degree of sleepiness), higher BMI levels (i.e., higher values of overweight and obesity), less participation in leisure activities, and a lower perception of QoL. A higher perception of QoL is associated with school participation unaffected by the existing CC, sleeping well, a low level of sleepiness, a more frequent practice of physical activity, a lower BMI, and a greater involvement in leisure activities. Adolescent health and well-being are a prominent issue in terms of public policies, with behavior and lifestyle playing a significant role in this domain. This message needs to be reinforced in regard to families, educators, healthcare professionals, and public sector policies, particularly concerning students with CC.