Quality Of Life Domains Research Articles

Abstract PO3-27-06: Investigating The Association Between Exercise and Quality of Life Among Breast Cancer Survivors in The Black Women’s Health Study

Abstract Background: Black breast cancer survivors (BCS) experience suboptimal quality of life (QoL) compared to White BCS. QoL is a multi-dimensional concept focused on different aspects of wellbeing. Exercise (a subset of physical activity) has been shown to improve QoL in cancer survivors. However, there is limited evidence on the benefits of exercise in relation to QoL among Black BCS and warrants further investigation. Purpose: To examine the association between exercise intensity (e.g., moderate activity) and multiple domains of QoL (e.g., physical wellbeing) among BCS in the Black Women’s Health Study (BWHS). Methods: The BWHS is the largest prospective cohort study following 59,000 Black women in the United States since 1995. Self-reported questionnaires are distributed every two years to obtain current health information, including lifestyle factors and disease occurrence. The 2019 survey data, completed by 3,608 Black BCS, were used to address the primary aim. Of the 3,608 Black BCS, 1,085 females were eligible to participate in this cross-sectional study. The primary predictors were moderate and vigorous exercise intensity. The outcomes (physical, mental, functional, social functioning, and financial wellbeing) were categorized as excellent, very good or good, and fair or poor health. The covariates were marital status, occupation, education, age, body mass index, time since diagnosis, breast cancer stage, and general health. Adjusted multinomial logistic regressions were performed to estimate the odds ratios and 95% confidence intervals for the associations with each predictor. Multiple imputation was used to address missing data. Results: At baseline, the majority of the BCS were 64 years or younger (99%), premenopausal (69%), employed (95%), and had more than a high school degree (86%). About 50% of the participants were married or living as married. There were significant and positive associations between exercise intensity and QoL (p< .05). Compared to BCS who reported little or no exercise (< 60 minutes/week), those who reported at least 60 minutes/week of vigorous exercise had greater odds of experiencing excellent QoL including financial wellbeing (OR=1.70, 95% CI: 1.08-2.67), functional wellbeing (OR=3.64, 95% CI: 1.56-8.49), social functioning (OR=4.56, 95% CI: 2.42-8.60), and physical wellbeing (OR=4.26, 95% CI: 2.12-8.52). Similarly, BCS who engaged in at least 150 minutes of moderate exercise/week had increased odds of reporting excellent social functioning (OR=2.59, 95% CI: 1.41-4.76) and functional wellbeing (OR=4.40, 95% CI: 1.89-10.24) than those who engaged in less than 150 minutes/week of moderate exercise. Conclusions: Black BCS who engage in certain durations (e.g., 150 minutes/week) and exercise intensities (e.g., moderate activity) tend to have better QoL. These findings may help to build upon the relevance of exercise in the context of supportive care for racial and ethnic minority cancer survivors and encourage healthcare professionals to assess the frequency, intensity, time, and type of exercise during routine or follow-up care. Future longitudinal studies are needed to examine the proposed associations among Black BCS and to compare the current study findings. Citation Format: Natasha Burse, Chris Wiesen, Todd Schwartz, Shawn Kneipp, Ashley Leak Bryant. Investigating The Association Between Exercise and Quality of Life Among Breast Cancer Survivors in The Black Women’s Health Study [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-27-06.

Abstract PO2-12-01: Five-year quality of life (QOL) trajectories among young breast cancer (BC) survivors

Abstract Background: Young BC survivors are at risk for impaired QOL in part due to issues that are unique to their life stage. We sought to characterize trajectories of QOL in the 5 years following diagnosis among young BC survivors as well as evaluate patient and clinical characteristics associated with poorer or deteriorating QOL trajectories over time. Methods: Women diagnosed with stage I-III BC at age ≤40 enrolled in the Young Women’s BC Study, a prospective cohort in North America, who completed ≥2 study surveys through 5 years of post-diagnosis follow-up. QOL was evaluated with the Cancer Rehabilitation Evaluation System (CARES) physical, psychosocial, and sexual subscale scores. Demographic, treatment, and clinical characteristics were ascertained through surveys and chart review. Longitudinal trajectories for each CARES subscale were defined using group-based trajectory modeling; associations between patient/clinical characteristics and trajectory group membership were estimated for each subscale using multivariable multinomial logistic regression. Results: Among 900 women, median age at diagnosis was 36 (range: 17-40) 89% were white, 2% Black, and 4% Hispanic. At baseline, 73% were partnered, 61% parous and 49% perceived themselves as financially comfortable. Most had hormone-receptor positive (74%), HER2-negative (70%) BC, and most received chemotherapy (82%); 36% underwent mastectomy with radiation. Physical and psychosocial scores each clustered into 4 trajectories, with >75% of participants clustering in groups reflecting excellent or good QOL that was stable over time and few (6% for physical and 4% for psychosocial) clustering into groups that reflected poorer QOL at baseline that did not improve over time. Sexual health trajectories were more variable, clustering into 5 trajectories, with over half of participants clustered into groups reflecting good (35%) or excellent (20%) QOL that remained relatively stable over time, 22% clustered into a trajectory that was poor at baseline but moderately improved over follow-up, 13% in a group that reflected deteriorating from moderate-to-poor QOL and 11% in a group with poor QOL at baseline that did not improve over time. In multivariable regression analyses (Table), factors associated with clustering in a poorer trajectory (vs. clustering in an excellent trajectory), in multiple QOL domains included baseline financial discomfort (associated with poorer QOL across all 3 domains), mastectomy+radiation (vs. lumpectomy, associated with poorer QOL across all 3 domains); chemotherapy receipt (associated with poorer physical and sexual health trajectories); and baseline BMI >25 (vs. 18.5-24.9, associated with poorer physical and poorer/deteriorating sexual health trajectories). Conclusions: Young BC survivors follow distinct QOL trajectories in survivorship. While most will not experience substantial QOL impairment through the first 5 years following diagnosis, a substantial minority report persistently poor or deteriorating QOL. The association between more extensive local therapy and poorer physical/psychosocial/sexual health trajectories underscores the importance of communicating the potential for negative QOL outcomes when women are making surgical decisions. Additionally, the pervasive impact of financial wellbeing on multiple QOL domains supports the potential value of systematic screening for and addressing of financial distress to prevent or mitigate financial toxicity in survivorship Factors associated with clustering in poorer/deteriorating (vs. excellent) QOL trajectories *Reference trajectory=excellent QOL Citation Format: Tal Sella, Zheng Yue, Kathryn Ruddy, Shari Gelber, Rulla Tamimi, Jeffrey Peppercorn, Lidia Schapira, Virginia Borges, Steven Come, Eric Winer, Ann Partridge, Shoshana Rosenberg. Five-year quality of life (QOL) trajectories among young breast cancer (BC) survivors [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO2-12-01.

Quality-of-Life Instruments and Nutrition Screening Tools

Background Quality of life (QoL) is critical for healthy aging—both for older adults and for healthcare providers/health systems. Eating and nutritious food are essential for older adults to remain healthy/independent and maintain good nutrition status and also provide pleasure and enhance QoL. However, research on nutrition and QoL is limited, including for building understanding of the relationship between nutrition and QoL and of the instruments and tools used to help develop a research framework and evaluate the impact of United States community nutrition programs/services on QoL. Objectives The first objective is to review overlaps/gaps in previously identified/validated QoL instruments and nutrition screening tools used in research with community-living older adults and then, second, to use these findings to suggest opportunities for further research and implications for developing US health and nutrition policies/programs supporting healthy aging. Methods Twenty validated QoL instruments were reviewed to determine if they included nutrition-related items that corresponded to 8 QoL domains (physical health, emotional state, mental health, social connection, environment, personhood, autonomy, and spiritual feeling). Sixteen validated nutrition screening tools were reviewed to determine if any of their nutrition items corresponded with these same 8 QoL domains. Results Of the 20 QoL instruments reviewed, 75% included at least 1 nutrition-related item, most commonly fitting into the autonomy (n = 11), physical health (n = 7), social connection (n = 3), environment (n = 3), emotional state (n = 2), mental health (n = 2), and personhood (n = 1) domains, with none in the spiritual feeling domain. All 16 nutrition screening tools included at least 1 nutrition-related item corresponding to a QoL domain, most commonly the physical health (n = 16) domain. Other QoL domains represented by nutrition items in nutrition screening tools were autonomy (n = 9), emotional state (n = 5), social connection (n = 5), environment (n = 4), and mental health (n = 3). Commonalities existed between QoL instruments and nutrition screening tools in types of nutrition-related items included, but there were many inconsistencies/gaps. Conclusions Nutrition items corresponding to different QoL domains are found inconsistently among validated QoL instruments and nutrition screening tools. Nutrition can be potentially modified to benefit healthy aging and QoL outcomes; findings present opportunities for further research to help increase understanding of the relationship between QoL and nutrition and the effectiveness of nutrition interventions, as well as to help advance US policy development and programs supporting healthy aging.

Quality of life in chordoma survivors: results from the Chordoma Foundation Survivorship Survey.

Chordomas are rare malignant bone tumors whose location in the skull base or spine, invasive surgical treatment, and accompanying adjuvant radiotherapy may all lead patients to experience poor quality of life (QOL). Limited research has been conducted on specific demographic and clinical factors associated with decreased QOL in chordoma survivors. Thus, the aim of the present study was to investigate several potential variables and their impact on specific QOL domains in these patients as well the frequencies of specific QOL challenges within these domains. The Chordoma Foundation (CF) Survivorship Survey was electronically distributed to chordoma survivors subscribed to the CF Chordoma Connections forum. Survey questions assessed QOL in three domains: physical, emotional/cognitive, and social. The degree of impairment was assessed by grouping the participants into high- and low-challenge groups designated by having ≥ 5 or < 5 symptoms or challenges within a given QOL domain. Bivariate analysis of demographic and clinical characteristics between these groups was conducted using Fisher's exact test and the Mann-Whitney U-test. A total of 665 chordoma survivors at least partially completed the survey. On bivariate analysis, female sex was significantly associated with increased odds of significant emotional (p = 0.001) and social (p = 0.019) QOL burden. Younger survivors (age < 65 years) were significantly more likely to experience significant physical (p < 0.0001), emotional (p < 0.0001), and social (p < 0.0001) QOL burden. Skull base chordoma survivors had significantly higher emotional/cognitive QOL burden than spinal chordoma survivors (p = 0.022), while the converse was true for social QOL challenges (p = 0.0048). Survivors currently in treatment were significantly more likely to experience significant physical QOL challenges compared with survivors who completed their treatment > 10 years ago (p = 0.0074). Fear of cancer recurrence (FCR) was the most commonly reported emotional/cognitive QOL challenge (49.6%). Only 41% of the participants reported having their needs met for their physical QOL challenges as well as 25% for emotional/cognitive and 18% for social. The authors' findings suggest that younger survivors, female survivors, and survivors currently undergoing treatment for chordoma are at high risk for adverse QOL outcomes. Additionally, although nearly half of the participants reported a FCR, very few reported having adequate emotional/cognitive care. These findings may be useful in identifying specific groups of chordoma survivors vulnerable to QOL challenges and bring to light the need to expand care to meet the QOL needs for these patients.

Impact of Metabolic Syndrome and Cardiovascular Risk on the Quality of Life of People Living with HIV.

The time elapsed since HIV infection diagnosis (TdiagHIV) affects the quality of life (QoL) and can get worse when chronic illnesses start. The aim of this study was to analyze the impact of metabolic syndrome (MetS) and cardiovascular risk (CVR) on the QoL of people living with HIV (PLHIV). Cross-sectional study, with 60 PLHIV followed at a Reference Center in the city of Jataí, Goiás, Brazil. Data collection involved sociodemographic, clinical, CVR, MetS, and QoL information. The data were analyzed using descriptive and inferential statistics, with the BioEstat 5.3 program adopting p<0.05. There was a predominance of men (61.7%), aged ≤38 years (53.3%), with a TdiagHIV of 97.88±85.65 months and use of antiretroviral therapy (ART) of 80.13±69.37 months. The worst domain of QoL was concern about confidentiality (40 points), and the best was medication concerns (95 points). MetS predominated at 18.3% and a moderate CVR at 11.7%. MetS was positively associated with age >38 years, the female sex, with the lowest score in QoL for general function, and the highest for TdiagHIV and the use of ART (p<0.05). A moderate CRV was positively related to higher TdiagHIV and ART use, and low HDL-c, and the lowest score for QoL was found for trust in a professional (p<0.05). PLHIV who are older, have a higher TdiagHIV, and use ART are more likely to develop MetS and moderate CVR. The presence of these diseases in PLHIV causes impairment in areas of QoL.

The Fear of COVID-19: Effects on Psychosocial Factors and Quality of Life in Patients with Cystic Fibrosis

Objective: Psychosocial effects have been reported in patients with cystic fibrosis (pwCFs), which is chronic disease, and inconsistent results were observed in pandemic between studies. This study investigated the effects of Coronavirus (COVID-19) pandemic on anxiety, depression and quality of life (QoL) levels among pwCFs. Material and Methods: The data of all participants included in the study were collected through two web-based questionnaires, one for pwCFs and general population (GP) controls. Two questionnaire versions had similar questions, prepared by the researchers. The pwCFs questionnaire augmented with CF targeted questions. Also, both questionnaires included COVID-19 Fear Scale, Hospital Anxiety Depression Scale (HADS) and World Health Organization QoL Scale Short Form (WHOQOL-Bref) question items. Results: Sixty-four pwCFs and seventy GP controls completed the questionnairesCompared to GP controls, pwCFs had increased fear of COVID-19, anxiety, depression, and decreased QoL levels (p&amp;lt;0.001). The fear of COVID-19 had significant effects on anxiety (R2=0.506; p&amp;lt;0.001), depression (R2=0.337; p&amp;lt;0.001), and QoL domains of general health status (R2=0.095; p=0.013), physical (R2=0.239; p&amp;lt;0.001) and psychological health (R2=0.275; p&amp;lt;0.001), and environment (R2=0.179; p&amp;lt;0.001), but not on social relationships (p&amp;gt;0.05) in pwCFs. In GP controls, the fear of COVID-19 had significant effects on anxiety and depression (p&amp;lt;0.05), but not on any QoL domains (p&amp;gt;0.05). Conclusion: According to our study findings, theincrease in fear of COVID-19 had a negative impact on anxiety, depression and QoL in pwCFs.Psychosocial influences in pwCFs need to be further investigated in future cross-sectional studies in case of a possible pandemic and lockdown.

Treatment Approaches for Altered Facial Expression: A Systematic Review in Facioscapulohumeral Muscular Dystrophy and Other Neurological Diseases.

Facial weakness is a key feature of facioscapulohumeral muscular dystrophy (FSHD) and may lead to altered facial expression and subsequent psychosocial impairment. There is no cure and supportive treatments focus on optimizing physical fitness and compensation of functional disabilities. We hypothesize that symptomatic treatment options and psychosocial interventions for other neurological diseases with altered facial expression could be applicable to FSHD. Therefore, the aim of this review is to collect symptomatic treatment approaches that target facial muscle function and psychosocial interventions in various neurological diseases with altered facial expression in order to discuss the applicability to FSHD. A systematic search was performed. Selected studies had to include FSHD, Bell's palsy, Moebius syndrome, myotonic dystrophy type 1, or Parkinson's disease and treatment options which target altered facial expression. Data was extracted for study and patients' characteristics, outcome assessment tools, treatment, outcome of facial expression and or psychosocial functioning. Forty studies met the inclusion criteria, of which only three studies included FSHD patients exclusively. Most, twenty-one, studies were performed in patients with Bell's palsy. Studies included twelve different therapy categories and results were assessed with different outcomes measures. Five therapy categories were considered applicable to FSHD: training of (non-verbal) communication compensation strategies, speech training, physical therapy, conference attendance, and smile restoration surgery. Further research is needed to establish the effect of these therapies in FSHD. We recommend to include outcome measures in these studies that cover at least cosmetic, functional, communication, and quality of life domains.

Food insecurity and quality of life in patients with sickle cell disease.

Little is known about the relationship between quality of life (QOL) and food insecurity (FI) among patients with sickle cell disease (SCD). We hypothesized FI is associated with lower QOL in children and young adults with SCD. Overall (N=99), 22% screened positive for FI. Supplemental Nutrition Assistance Program (SNAP) enrollment was 50 and 71% among people from food secure and FI households, respectively. A higher FI score was correlated with lower overall QOL (r=-0.22, p=.03), specifically lower QOL in worry and communication domains. Interventions for FI beyond SNAP may be important for QOL among people living with SCD.

Measuring the effects of nurse-led frailty intervention on community-dwelling older people in Ethiopia: a quasi-experimental study

BackgroundDespite the critical need, interventions aimed at frailty in sub-Saharan Africa are scarce, attributed to factors such as insufficient healthcare infrastructure, the pressing need to address infectious diseases, maternal and child health issues, and a general lack of awareness. Hence, the aim of this research was to develop, implement, and evaluate the effect of a nurse-led program on frailty and associated health outcomes in community-dwelling older individuals in Ethiopia.MethodsThis study utilised a pre-test, post-test, and follow-up single-group quasi-experimental design. The main outcome measure was to determine changes in the frailty levels of older individuals living in communities at three different intervals: initially (T0), immediately after the intervention (T1), and 12 weeks following the intervention (T2). Secondary outcomes were the observed changes in daily living activities, nutritional status, depression levels, and quality of life (QOL), evaluated at each of these data collection points. To analyse changes in frailty and response variables over these periods, Friedman’s ANOVA and Cochran’s Q test were employed, setting the threshold for statistical significance at P < 0.05.ResultsSixty-six older people with a high adherence rate of 97% completed the intervention and the follow-up measurements. Participants had an average age of 66.7 ± 7.9 years, with females comprising 79.4% of the group. Notably, 12 weeks post-intervention, there was a marked decrease in frailty (χ2(2) = 101.05, p < 0.001) and depression scores (χ2(2) = 9.55, p = 0.008) compared to the baseline. However, the changes in depression, physical, mental, and environmental domains of QOL were not sustained for 12 weeks post-intervention. Study participants showed an improvement in nutritional status (χ2(2) = 25.68, p < 0.001), activity of daily living (χ2(2) = 6.00, p = 0.05), and global quality of life (χ2(2) = 20.64, p < 0.001).ConclusionsThe nurse-led intervention notably, 12 weeks post-intervention reduced frailty and depression. The intervention improved the nutritional status and some components of the quality of life of the participants. There is a need for further studies, especially with larger participant groups and stronger research designs such as randomized controlled trials (RCTs).Trial registrationClinicalTrials.gov: NCT05754398 (03/03/2023).

Exploring the Nexus: Economics of Happiness and Quality of Life in College Students

A happy person will have a more active lifestyle, better career opportunities, and promote a more productive, cohesive, and lasting sustainable society. India is noted for having one of the world’s youngest populations. India has more than fifty percent of the population under 25. The primary objective of this study is to explore the levels of happiness and quality of life among college students in rural and urban areas of Karnataka. The sample comprises college students aged 18 to 25, drawn from different rural and urban colleges in Karnataka using a stratified random sampling method: the Oxford Happiness Questionnaire and the Quality-of-Life Questionnaire for data collection. The collected data underwent analysis using descriptive and inferential statistical methods. It was observed in the present study that there was no significant difference between rural and urban students in Physical and Psychological quality of life. Results also indicate that in Social and Environmental domains urban students are better than rural students. The study revealed a significant relationship between happiness and different quality of life domains among urban and rural college students

Good physical function but reduced quality of life in children 3 years after ACL reconstruction.

To assess children's physical function and subjective knee status 1 and 3 years after anterior cruciate ligament (ACL) reconstruction. It was hypothesised that there was no difference between the operated and normal legs in relation to physical strength and function, that there was <-2 mm side-to-side difference in knee laxity, and that the subjective knee function was better 3 years after ACL reconstruction compared to 1 year after. Children (<16 years of age) who had an ACL reconstruction had follow-up with physical function tests (four hop tests and strength measurement in a power rig [PR]), anterior knee laxity (measured using a Rolimeter) and patient-reported outcome measures (Pedi-International Knee Documentation Committee [IKDC] and Knee injury and Osteoarthritis Outcome Score [KOOS]-Child) 1 and 3 years postoperatively. Changes from 1- to 3-year follow-up were evaluated with a paired t test. Out of 148 ACL reconstructed children, 60 had all measures. The four hop tests and the PR all yielded a Limb Symmetry Index >90% at both follow-ups. There was a significant improvement from 1- to 3-year follow-up in two-hop tests (6 m on time and crossover hop). Side-to-side knee laxity was >2 mm in four children at 1- and 3-year tests. Pedi-IKDC scores increased, and KOOS-Child improved significantly from 1 to 3 years in two of the five domains: 'Sport' and 'Quality of life', but scores were lower than in a cohort of normal children. The children had good objective physical function 1 and 3 years after ACL reconstruction. However, scores from the KOOS-Child sport-specific function and quality of life domains were lower than in normal children. Level II.

OA19 Self-reported prevalence and impact of clinical signs, symptoms and events in adults with osteogenesis imperfecta

OA19 Self-reported prevalence and impact of clinical signs, symptoms and events in adults with osteogenesis imperfecta

Transcranial direct current stimulation (tDCS) for neurological disability among subacute stroke survivors to improve multiple domains in health-related quality of life: Randomized controlled trial protocol

ObjectivesThe primary goal of the current proposal is to fill the gaps in the literature by studying the effectiveness of transcranial direct current stimulation (tDCS) on lifestyle parameters, and physical, behavioral, and cognitive functions among stroke survivors, and understanding the factors that mediate the effects of various domains related to Health-related Quality of life (HRQoL) improvements. MethodsAnticipated 64 volunteer subacute stroke survivors (>7 days to 3 months post stroke) aged 40–75 years with National Institutes of Health stroke scale (NIHSS) score of >10 and Mini-Mental State Examination (MMSE) score between 18 and 23 will be randomly assigned at a ratio of 1:1 to receive either: (1) 20 sessions of anodal tDCS or (2) sham tDCS in addition to conventional rehabilitation. Battery driven tDCS will be applied at 2 mA intensity to the dorsolateral prefrontal cortex and primary motor cortex for 20 minutes. The primary endpoints of study will be 36-Item Short Form Survey (SF-36) post intervention at 4 weeks. The secondary outcomes will include Stroke Specific Quality of Life Scale (SS_QOL), Montreal cognitive assessment (MCA), Beck Anxiety Inventory (BAI), Fugl-Meyer Assessment (FMA), 10 m walk test and Modified Barthel Activities of daily living (ADL) Index. At 0.05 level of significance, data normality, within group and between group actual differences will be analyzed with a moderate scope software. DiscussionOur knowledge of this technique and its use is expanding daily as tDCS motor recovery studies—mostly single-center studies—in either single session or many sessions have been completed and shown positive results. The field is prepared for a multi-center, carefully planned, sham-controlled, double-blinded tDCS study to comprehensively examine its feasibility and effectiveness in enhancing outcomes in stroke population. ConclusionThe function of Transcranial Direct Current Stimulation in aiding stroke recuperation will be ascertained.

Dysphagia in neuromyelitis optica spectrum disorder and multiple sclerosis: A comparison of frequency, severity, and effects on quality of life

OverviewDysphagia has been previously discussed as a potential life-threatening condition secondary to chronic neurological diseases such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD). However, its impact on the quality of life (QoL) of patients with NMOSD has never been studied before. This study aims to determine the frequency of dysphagia and its impact on QoL in NMOSD patients in comparison with MS people and healthy individuals. MethodsSeventy-five MS and sixty-five NMOSD patients with an expanded disability status scale (EDSS) score ≥ 3.5 in addition to 106 healthy controls were enrolled in this cross-sectional study. All the participants completed the self-report dysphagia in MS (DYMUS) and 36-item short-form health survey (SF-36) questionnaires. In case of positive answers to at least one of the questions in DYMUS, they were asked to fill out the dysphagia handicap index (DHI) questionnaire. ResultsThe frequency of dysphagia in NMOSD, MS, and control groups was 61.54 %, 72.97 %, and 27 %, respectively. Patients with swallowing problems had reduced scores across different swallowing-related QoL domains compared to non-dysphagic patients (p < 0.05). NMOSD (1, IQR [0–3.5]) and MS patients (2, IQR [0–4]) had a significantly higher median total DYMUS score than control (0, IQR [0–1]) (p < 0.01). However, there was no discernible difference between the two patient groups. NMOSD had the highest mean total DHI score (21.22 ± 21), followed by MS (15.25 ± 18.94) and control (7.08 ± 5.12). A significant correlation was seen in the NMOSD group between the DHI total score and the SF-36 total score (r = 0.62, p < 0.05). The DHI and SF-36 subscales showed a strong association as well. The overall SF-36 scores in both the control and MS groups was not significantly correlated with DHI. The generalized linear model analysis showed that the NMOSD group's age (p-value = 0.005), EDSS (p-value < 0.001), and total DYMUS score (p-value = 0.018) significantly affected overall health status. ConclusionThe presence of dysphagia significantly impacts the QoL in NMOSD patients, particularly in aspects related to swallowing. These findings underscore the critical need for diligent dysphagia screening and emphasize the importance of educating both caregivers and NMOSD patients about managing this challenging symptom.

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL.

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8-12 and 13-18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people's comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

Correlations of university students' feelings during the COVID-19 pandemic with academic adaptation and quality of life

This study aimed to identify the feelings experienced by university students during the COVID-19 pandemic and its correlation with academic adaptation and quality of life (QoL). Through a cross-sectional and correlational design, 90 university students completed a questionnaire about feelings, academic adaptation, and QoL during the pandemic. Spearman's correlation was used to identify the correlation between the feelings of academic adaptation and quality of life. Multiple linear regression models were used to identify the predictors of feelings of academic adaptation and the physical and mental components of the quality of life. Good academic adaptation and good QoL scores were identified in the sample. During the pandemic period, students experienced feelings of exhaustion, discouragement, irritation, exhaustion, insecurity, drowsiness, anxiety, worry, and tiredness with greater intensity. Positive feelings, such as energy and willingness, were reported as well. The feelings could predict variations in academic adaptation and physical and mental health. Additionally, a greater correlation of feelings was identified with the QoL domains related to the individual's perception of mental health. The results of this study highlight that, in the context of public health emergencies, investments are needed in institutional policies to support students, avoid difficulties in academic adaptation that impact dropout, and avoid the emergence or worsening of disorders such as anxiety and depression.

Health and health care are essential to the quality of life of people with intellectual disability

AbstractHealth represents the dynamic balance of physical, mental, social, and existential well‐being in adapting to conditions of life and the environment. Health is essential for the quality of life (QoL) of all individuals, including those with intellectual disability (ID). People with ID experience health inequities and barriers to quality health care that must be addressed to foster the QoL of this population. This paper illustrates how poor health negatively impacts each of the eight domains of the QoL model proposed by Shalock and Verdugo (2002) (e.g., health conditions limit work performance, decreasing opportunities for personal development and self‐determination). Suggestions for healthcare practices and behaviors that would improve the quality of healthcare provided to people with ID, and thus their health and QoL, are offered (e.g., engaging people with ID in the medical conversation, talking to them in plain language and without jargon enhances the personal development, self‐determination, interpersonal relationships, and social inclusion domains of QoL). Finally, we suggest actions that people with ID and their families might implement to maximize their health and wellness (e.g., maintaining a healthy lifestyle, and using the health promotion resources provided by disability organizations).

Impact of subjective and objective language function and psychological distress on quality of life in glioma patients awaiting surgery

ABSTRACT Background Maintaining quality of life (QoL) and identifying contributing factors is an important aspect of treatment for glioma patients. Little is known about to what extent language function and psychological distress impact QoL before surgery. Aims The aim of the present study was to investigate the impact of subjective and objective language function, as well as psychological distress on domains of QoL before surgery. Methods and procedures Twenty-seven patients (52% female) with a suspected glioma, grade 1‒3 based on symptoms and MRI imaging diagnostics were assessed pre-surgery. Subjective language concerns, psychological distress and QoL were investigated with self-reported questionnaires. A Subjective language index was calculated, based on items addressing word-finding, expression of thoughts, reading and writing. Objective language function was assessed with tasks of naming (The Boston Naming Test), verbal comprehension (Vocabulary and Similarities), verbal fluency (Semantic and Phonemic fluency) and verbal short-term and working memory (Digit span forward and backward). The strength of associations was determined using Spearman’s rho correlations. Linear regression analyses were used to examine predictors for QoL. Outcomes and Results Clinically significant reductions in QoL were found in 48% of the sample. Subjective language concerns were highly common, with 85% reporting some degree of difficulty. Group means on objective language tests were within normative range on the included measures. The Subjective language index correlated significantly with several QoL domains, whereas objective performance mainly correlated with functional well-being. Psychological distress was a strong predictor for QoL. Conclusions The findings demonstrate that reductions in QoL may occur during the diagnostic phase, even before glioma treatment starts. Subjective language concerns and psychological distress contributed to all aspects of QoL and highlight the importance of acknowledging patient-reported information. The results suggest a comprehensive multi-modal assessment of glioma patients pre-surgery, to establish a base-line and facilitate patient-centered treatment planning.

Impact of Air Pollution and Allergic Status on Health-Related Quality of Life among University Students in Northern Thailand.

Global awareness of ambient air pollution has heightened due to its detrimental impact on health, particularly in regions with elevated PM2.5 levels. Chiang Mai has emerged as an area experiencing the highest PM2.5 levels in Thailand. to examine the prevalence of respiratory allergies and assess the impact of air pollution on the health-related quality of life (QoL) among university students in Chiang Mai. Chiang Mai University (CMU) and Maejo University (MJU) students were recruited. The Global Asthma Network (GAN) questionnaire screened for respiratory allergies (RAs). The disease-specific QoL questionnaire (Rcq-36) was administered twice during low-PM2.5 and high-PM2.5 seasons to evaluate air pollution's impact on health-related QoL. Those showing potential RAs underwent a skin prick test (SPT) to investigate allergic sensitization. Out of 406 participants, 131 (32%) reported respiratory allergies. Among those undergoing SPT, a high rate (82.54%) had positive results. Across both universities, students reported significantly lower QoL in multiple domains, particularly respiratory, eye, sleep, and emotional well-being, during the high-PM2.5 season. This aligned with their poorer self-reported health on a visual analog scale (VAS; p-value < 0.01). PM2.5 levels significantly impacted social functioning for CMU students (p-value = 0.001) and role limitations for MJU students (p-value < 0.001). Notably, participants without respiratory allergies (non-RAs) were more significantly affected by PM2.5 than RA participants in almost all parameters, despite experiencing fewer baseline symptoms. Respiratory allergies, particularly allergic rhinitis, are prevalent among university students in Chiang Mai. This study underscores the substantial negative impact of ambient air pollution on QoL for both allergic and non-allergic students.

Quality of life after immune suppressive therapy in aplastic anemia.

Acquired aplastic anemia (AA) is a rare form of immune-mediated bone marrow failure, which can result in life-threatening infections or bleeding if left untreated. Treatment consists of either immune suppressive therapy (IST) or allogeneic stem cell transplantation (alloHSCT). While considerable research has been published regarding survival, response rate and toxicity of both treatments, knowledge on the impact on quality of life (QoL) is scarce. We used the recently developed AA-specific QoL questionnaire (QLQ-AA/PNH-54) to evaluate QoL in a single center cohort of AA patients who were successfully treated with IST. The 54 questions represent 12 different QoL domains. Results were analyzed for all patients and grouped based on hematologic response (complete response (CR) or partial response (PR)). Thirty-six successfully treated adult patients (15 in CR, 21 in PR) completed the questionnaire (median age 54years, range 21-71; median time since last IST 5years, range 0-41). Fatigue was experienced by 83% of patients. Even though total QoL scores did not significantly differ between patients with PR and CR (105 vs 92, p-value 0,17) there appeared to be a trend towards higher scores in patients with PR, especially in domains concerning psychological wellbeing. This trend was most clear in the domains fear of progression (2,12 in PR patients vs 1,73 in CR patients; p-value 0,08) and role functioning (2,22 vs 1,88; p-value 0,07). In conclusion, patients with AA continue to experience psychological and physical effects despite successful IST.