Lower Health-related Quality Of Life Research Articles

Health-related quality of life does not deteriorate while waiting for anterior cruciate reconstruction.

The aim of this study was to determine how preoperative health-related quality of life (HRQoL) is affected by the duration of the wait time (WT) for anterior cruciate ligament reconstruction (ACLR) once a decision is made to proceed with surgery. This was a multi-centre prospective cohort study. One hundred and twenty-two patients 14 years of age and above waiting for ACLR completed the International Knee Documentation Committee (IKDC) demographic, current health assessmentand subjective knee evaluation (SKF) forms on the day of decision to operate and the day of surgery. Changes in scores were analyzed for the entire cohort, adjusted for WTsand a subset was compared for patients with isolated anterior cruciate ligament (ACL) tears and ACL tears with concurrent meniscal involvement. Changes in HRQoL scores from the day of the decision to operate to the 9-month postoperative appointments were also assessed. Energy/Fatigue (p < 0.05), Pain (p < 0.05), General Health (p < 0.05)and the IKDC-SKF Score (p < 0.05) significantly increased between the day of the decision to operate and the day of surgery. Only the change in IKDC-SKF score remained significantly higher after adjusting for WT. Baseline HRQoL scores significantly improved by the 9-month postoperative appointment. The length of time waiting for ACLR did not adversely influence HRQoL in this study. However, low preoperative HRQoL and the significant improvement in HRQoL of patients followed postoperatively suggest that timely surgery is beneficial for this patient population. Level II.

#2891 Comparing health-related quality of life and symptom burden in patients undergoing twice-weekly versus thrice-weekly haemodialysis

Abstract Background and Aims Patients with kidney failure who initiate haemodialysis (HD) have traditionally followed a thrice-weekly, 4-hour schedule. Recently, incremental dialysis (i.e. initiating HD with lower frequency and/or treatment duration) has been advocated. It has been suggested that residual kidney function is better preserved, while mortality is similar when initiating dialysis with a twice versus thrice weekly schedule. It remains unclear which impact initiating dialysis twice a week has on health-related quality of life (HRQoL) in the short and long term. Therefore, the aim of this study was first to investigate the impact of following a twice-weekly dialysis schedule on the mental and physical HRQoL and symptom burden compared to thrice-weekly dialysis during the first year of dialysis. Second, to investigate the long term impact on mental and physical HRQoL and symptom burden of patients who solely started on a twice-weekly versus thrice-weekly schedule. Method Data were obtained from the ongoing multicentre, prospective, observational Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). This study longitudinally compares HRQoL between home and in-center dialysis. For this analysis, incident HD patients &amp;gt; 18 years were included, if they started on a twice-weekly or thrice-weekly schedule. Mental and physical HRQoL was measured using the validated 12-item Short Form Health Survey (SF12, summary scores ranging from 0 to 100). Symptom burden was measured using the dialysis symptom index (DSI), consisting of 30 items on dialysis-related symptoms, these symptoms are reported using a 5-point Likert scale. The overall burden score, ranging from 0 to 150, was calculated by summing every symptom and its severity. The first aim was longitudinally analysed using linear mixed models, using measures at 3, 6 and 12 months after start dialysis. The second aim was cross-sectionally analysed at 1, 2 and 3 years after dialysis initiation using linear regression models. All models were adjusted for possible confounders. Results A total of 1007 patients were included, of whom 205 started on a twice-weekly schedule and 802 on a thrice-weekly schedule. The total population had a mean age of 64 ± 15 years and 35% were women. There was no significant difference in baseline characteristics between twice-weekly and thrice-weekly dialysis. At baseline mental and physical HRQoL for patients on twice-weekly dialysis were 45.9 ± 9.5 and 36.0 ± 10.7, respectively. In thrice-weekly dialysis this was 45.8 ± 10.3 and 35.0 ± 9.7. The symptom burden score at baseline was 33.0 ± 19.6 for twice-weekly and 34.0 ± 21.7 for thrice-weekly patients. As shown in Table 1, there were no significant differences in HRQoL or symptom burden over the first year of dialysis when comparing twice-weekly with thrice weekly HD. In Table 2 the long-term cross-sectional analyses show that starting with a twice-weekly schedule results in physical and mental HRQoL scores gradually becoming lower, with a statistically significant decrease in physical HRQoL score at 3 years after start dialysis (ß = −0.825, 95% CI −14.11; −2.38). There was no significant difference in symptom burden between the two schedules. Conclusion We found no differences in HRQoL or symptom burden during the first year of dialysis comparing incident patients on a twice-weekly versus thrice-weekly hemodialysis schedule. Conversely, starting on a twice-weekly dialysis schedule appears to be associated with a lower HRQoL, especially physical HRQoL, in the longer term. Following our results, physicians should be cautious of the possible negative effects on HRQoL when prescribing a twice-weekly dialysis schedule.

#1462 Muscle mass, muscle strength, and health-related quality of life in kidney transplant recipients results of the TransplantLines Biobank &amp; cohort study

Abstract Background and Aims Muscles play a vital role in nearly every aspect of daily living, and kidney transplant recipients (KTR) often experience reduced muscle mass and strength, potentially contributing to their diminished health-related quality of life (HRQoL). We aimed to investigate the potential relationship of muscle mass and muscle strength with physical HRQoL in KTR. Method Data of stable KTR (≥1 year after transplantation) enrolled in the TransplantLines Biobank and Cohort Studies were used. Muscle mass was assessed using both appendicular skeletal muscle mass (via bioimpedance analysis) indexed to height squared (ASMI) and 24-hour urinary creatinine excretion rate indexed to height squared (CERI). Muscle strength was assessed using handgrip strength indexed to height squared (HGSI). HRQoL was assessed using the physical component score derived from the Short Form 36 questionnaire. Results A total of 751 KTR (61% male, mean age 56 ± 13 years) at a median of 3 years after transplantation were included. Mean ASMI was 7.5 ± 1.2 kg/m2, mean CERI was 4.1 ± 1.1 mmol/24 h/m2 and mean HGSI was 12.4 ± 3.4 kg/m2. The mean physical HRQoL score was 70 ± 21. Lower ASMI, CERI and HGSI were all associated with lower physical HRQoL, independent of potential confounders. Both associations were best characterized by a significant non-linear relationship (see Figure). Below median values, ASMI, CERI and HGSI were each associated with physical HRQoL, whereas above median values, associations were far less pronounced. When associations of ASMI, CERI and HSGI were adjusted for each other, associations of below median values of ASMI and CERI with physical HRQoL materially weakened, while those of HGSI remained strongly associated. Compared to the 50th percentile, a decrease to the 10th percentile was associated with a decrease in physical HRQoL of 6.0% for ASMI (P = 0.006), of 5.1% for CERI (P = 0.006) and 13.2% for HGSI (P &amp;lt; 0.001), whereas an increase to the 90th percentile was associated with an increase in physical HRQoL of only 1.3% for ASMI (P = 0.22), of 3.6% for CERI (P = 0.05) and −0.4% for HGSI (P = 0.73). Conclusion Our findings suggest that low muscle mass and muscle strength are potentially modifiable risk factors for impaired physical HRQoL. Both muscle mass and muscle strength were complementarily associated with HRQoL. However, muscle strength was most strongly associated with physical HRQoL. The non-linear nature of the associations implies that KTR with low muscle mass or strength may particularly benefit from (p)rehabilitation interventions to improve HRQoL.

Longitudinal associations of plasma kynurenines and ratios with fatigue and quality of life in colorectal cancer survivors up to 12 months post-treatment.

Fatigue is prevalent in colorectal cancer (CRC) survivors, impacting their health-related quality of life (HRQoL). Inflammation-induced activation of the kynurenine pathway may play a role in cancer-related fatigue and HRQoL, but evidence is scarce. Therefore, we aimed to investigate longitudinal associations of plasma tryptophan, kynurenines, and ratios with fatigue and HRQoL in CRC survivors up to 12 months post-treatment. Repeated measurements at 6 weeks, 6 months, and 12 months post-treatment were performed in 249 stage I-III CRC survivors. Plasma tryptophan and eight kynurenines were analyzed using liquid chromatography-tandem mass spectrometry (LC/MS-MS). Fatigue and HRQoL outcomes were evaluated using validated questionnaires. Confounder-adjusted linear mixed models were conducted to analyze longitudinal associations, with false discovery rate (FDR) correction. Higher tryptophan (Trp), kynurenic acid (KA), and xanthurenic acid (XA) concentrations, as well as a higher kynurenic acid-to-quinolinic acid ratio (KA/QA), were associated with less fatigue and better functioning, while a higher kynurenine-to-tryptophan ratio (KTR) and 3-hydroxykynurenine ratio (HKr) were associated with more fatigue and worse functioning. Finally, higher KA and XA concentrations and a higher KA/QA ratio were associated with a higher overall HRQoL summary score, while a higher HKr was associated with a lower overall HRQoL summary score. In conclusion, we observed that tryptophan and several kynurenines were longitudinally associated with fatigue and HRQoL in CRC survivors up to 12 months post-treatment. Future research is needed to validate our findings and explore the potential of the kynurenine pathway as intervention target for reducing fatigue and enhancing HRQoL after CRC treatment.

#1137 Association between cognitive function, depressive symptoms and quality of life in older patients with severely reduced GFR and kidney failure

Abstract Background and Aims Impaired cognitive function and reduced health-related quality of life (HRQoL) are common in older patients with chronic kidney disease (CKD) with severely reduced GFR and kidney failure. Older patients with CKD often regard HRQoL as a health priority, but it is unknown whether cognitive function associates with HRQoL and whether depressive symptoms mediate this association. We therefore aim to examine the association between cognitive function and HRQoL, and explore the mediating role of depressive symptoms. Method Patients aged 65 years and older with an eGFR between 20 and 10 mL/min/1.73 m2 participating in the ongoing DIALysis or not: Outcomes in older kidney patients with GerIatriC Assessment (DIALOGICA) study were included. Cognitive function, depressive symptoms and HRQoL were assessed using the Montreal Cognitive Assessment (MoCA), Geriatric Depression Scale (GDS-15) and Twelve-Item Short Form Health Survey (SF-12) questionnaire, respectively. The SF-12 yields a Mental Component Summary (MCS) score and Physical Component Summary score (PCS). We created a diagram of the hypothesized direct and indirect pathways between cognition and HRQoL, with depressive symptoms as the purported mediator (Fig. 1). We used cross-sectional multivariable linear regression analyses to examine the association between cognitive function and both mental and physical HRQoL, and multivariable mediation analyses to explore the role of depressive symptoms. Results In total, 403 patients were included with a mean age of 76.5 years, with a standard deviation (SD) of 5.8 and a mean eGFR of 14.5 mL/min/1.73 m2 (SD 3.0). A majority of patients were male (71.5%). Cognitive function associated significantly with mental HRQoL (adjusted β 0.30, 95% confidence interval (CI) 0.05; 0.55, p 0.021), but not with physical HRQoL (adjusted β 0.18, 95% CI −0.09; 0.44, p 0.20). The mediation effect of depressive symptoms between cognitive function and MCS remained significant after adjustment (indirect effect 0.15, 95% CI 0.04; 0.26). Thus, lower cognitive function was associated with lower mental HRQoL, which was partly mediated by corresponding increases in depressive symptoms. Conclusion Cognitive function is associated with mental HRQoL, but not with physical HRQoL in older patients with severely reduced GFR and kidney failure. This association is partially mediated by depressive symptoms. These findings underline the importance of screening for cognitive impairment and depressive symptoms in this population and may increase the understanding of what potentially affects HRQoL. As HRQoL is seen as a health priority, further research should explore whether cognitive interventions or treatment of depressive symptoms result in improvement of HRQoL in this population.

Love beyond gluten: self-esteem, illness identity, and social support in romantic rejection concerns among adolescents with celiac disease

IntroductionFear of stigmatization, high perceived partner burden, or refraining from self-disclosure may manifest in romantic rejection concerns among adolescents with celiac disease (CD), potentially impacting their health-related quality of life (HRQOL). This study examined the prevalence, predictors, and consequences of romantic rejection concerns among adolescents and young adults with CD.MethodsA cross-sectional online survey was conducted among 165 German adolescents and young adults (aged 14–22) with self-reported CD. Participants completed measures of romantic rejection concerns, illness identity, self-esteem, peer support, and CD-specific HRQOL.ResultsParticipants reported moderate levels of concerns about the impact of CD on their romantic relationships, with no significant gender differences. Participants involved in romantic relationships expressed lower concerns of rejection, but similar preference for a “gluten-free partner.” Hierarchical regression analysis revealed that higher illness acceptance and peer support predicted lower rejection concerns. Significant interactions emerged between self-esteem and illness acceptance, and between self-esteem and peer support. Higher illness acceptance predicted fewer rejection worries only among those with high self-esteem, while peer support played a mitigating role only for those with low self-esteem. Romantic rejection concerns significantly predicted lower CD-specific HRQOL across all domains.DiscussionAnxieties about CD's impact on romantic relationships are prevalent among adolescents and may hinder their HRQOL. The findings highlight the complex interplay between self-esteem, illness identity, and social support in shaping romantic concerns. Targeted interventions focusing on peer support and fostering positive illness identity are recommended to alleviate rejection fears and improve HRQOL among youth with CD.

Health-related quality of life in patients with generalized pustular psoriasis – a Swedish register study

Background Real-world data on health-related quality of life (HRQoL) in generalized pustular psoriasis (GPP) are scarce and studies have been restricted in terms of instruments used for assessments. Objective To assess generic and dermatology-specific HRQoL of patients with GPP compared with patients with plaque psoriasis using real-world data from the Swedish National Register for Systemic Treatment of Psoriasis. Methods Cross-sectional data from 2006 to 2021 including 7041 individuals with plaque psoriasis without GPP and 80 patients with GPP, of which 19% also had plaque psoriasis. Total scores for the EuroQol-5 Dimensions (EQ-5D) and Dermatology Life Quality Index (DLQI), as well as degree of severity within the instruments’ dimensions/questions, were compared between patient groups. Results EQ-5D scores were significantly (p < .01) lower (worse) in patients with GPP (mean [standard deviation (SD)] 0.613 [0.346]) vs. patients with plaque psoriasis (mean [SD] 0.715 [0.274]), indicating lower generic HRQoL of patients with GPP. Significantly (p < .01) higher (worse) total DLQI scores were observed for patients with GPP (mean [SD] 10.6 [8.9]) compared with patients with plaque psoriasis (mean [SD] 7.7 [7.1]), with proportionally more patients with GPP having severe (20% vs. 16%) and very severe (17% vs. 8%) problems. The worsened scores for GPP vs. plaque psoriasis were consistent across EQ-5D dimensions and DLQI questions. Conclusions Individuals with GPP have a considerable impairment in both generic and dermatology-specific HRQoL. The HRQoL was significantly worse in individuals with GPP compared to individuals with plaque psoriasis. The significant HRQoL impairment of GPP shows the potential value of better healthcare interventions for this multisystem disease.

Quality of life in retired workers with past exposure to asbestos.

Asbestos causes cancer and non-cancerous lung and pleural diseases and can also have a negative psychological impact but little is known about its effect on health-related quality of life. The aim of this study is to describe the health-related quality of life (HRQoL) of retired men with a history of occupational exposure to asbestos and examine factors linked with low HRQoL. Retired male workers of the French Asbestos-Related Disease Cohort (ARDCO) completed self-questionnaires that included SF-36v2 and HAD scales, questions about their perception of asbestos (perceived dangers and level of exposure, expectations to fall ill, or knowing someone who is) and their respiratory symptoms. Asbestos exposure was assessed by industrial hygienists. A perceived risk score was created using factorial analysis. Multivariable regressions were performed for all SF-36 subscales. A total of 1266 of 2075 questionnaires (61%) were returned complete and included in analysis. After adjustment for potential confounders, an increase in perceived risk score resulted in a decrease in physical component summary score (PCS), up to 10.7 points (p = 0.048) and in mental component summary score (MCS) (p = 0.044). Presence of respiratory symptoms was also associated with significantly decreased PCS and MCS (p < 0.001). Poor HRQoL was linked to higher perceived risk score with p ≤ 0.01 for all SF-36 dimensions. Asbestos exposure assessed by an expert was not associated with any outcome. All dimensions of HRQoL appear to be affected by the perceived risk of incurring asbestos-related disease and respiratory symptoms.

Health-related quality of life and impact of socioeconomic status among primary and secondary school students after the third COVID-19 wave in Berlin, Germany.

In the earlier phases of the COVID-19 pandemic, studies in Germany and elsewhere found an overall reduction in health-related quality of life (HRQoL) among students. However, there is little evidence on later pandemic stages as well as socioeconomic influencing factors. We aimed to (1) describe HRQoL in a Berlin student cohort at two time points in mid-2021, and to (2) analyze the effects of household income and education. We assessed HRQoL of students from 24 randomly selected primary and secondary schools in Berlin, Germany, with the KIDSCREEN-10 index in June and September 2021. To adjust for non-response bias, inverse probability weighting was applied. The potential effects of both household income and education (lower vs. higher) were estimated in generalized linear mixed models, based on prior assumptions presented in directed acyclic graphs. Our cohort comprised 660 students aged 7-19 years. In June 2021, 11.3% [95% CI = 9.0% - 14.0%] reported low HRQoL, whereas in September 2021, this increased to 13.7% [95% CI = 11.1% - 16.5%], with adolescent girls more frequently reporting low HRQoL at both time points (20% [95% CI = 17.1% - 23.3%] and 29% [95% CI = 25.5% - 32.5%]) compared to boys and younger children. While there was no statistically significant total effect of lower household income on HRQoL, a negative effect of lower household education was statistically significant (β = -2.15, SE 0.95, 95% CI = -4.01 to -0.29, p = 0.024). In summary, students' HRQoL in mid-2021 was better than that documented in other studies conducted at pandemic onset using KIDSCREEN-10. Female adolescents reported low HRQoL more often, and lower household education significantly reduced children's HRQoL. Support strategies for psychosocial wellbeing should consider socioeconomically disadvantaged children as important target groups.

Is there a link between health care utilisation and subjective well-being? An exploratory study among older Danes.

While extensive research has explored the influence of traditional factors such as socioeconomic position on health care utilisation, the independent role of an individual's well-being in their health care seeking behaviour remains largely uncharted territory. In this study, we delve into the role of subjective well-being (SWB) in health care utilisation. We use a unique link between survey data from a representative group of Danish citizens aged 50-80 and administrative register data containing information on health care utilisation and sociodemographics. We explore whether SWB is a predictor of health care utilisation (general practice services) over and above health (as measured by health-related quality of life (HRQoL)). We find that the association between SWB and number of services provided in general practice differs across levels of HRQoL. Among those with lower HRQoL, we find a positive association between health care utilisation and SWB. Results hold true even when controlling for previous health care utilisation, suggesting that the mechanism is not driven by reverse causality. Our findings suggest that, in particular for vulnerable individuals in poor health and with poor SWB, the propensity to seek care is inappropriately low, and there is a need for more proactive supply-driven health care.

Multilevel Characteristics of Cumulative Symptom Burden in Young Survivors of Childhood Cancer

Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied. To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL). A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024. Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose. Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations. Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL. In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.

Quality of life and quality-adjusted life years after stroke in Sierra Leone.

Stroke is a leading cause of mortality and negatively affects health-related quality of life (HRQoL). HRQoL after stroke is understudied in Africa and there are no reports of quality-adjusted life years after stroke (QALYs) in African countries. We determined the impact of stroke on HRQoL after stroke in Sierra Leone. We calculated QALYs at 1 year post-stroke and determined sociodemographic and clinical variables associated with HRQoL and QALYs in this population. A prospective stroke register was established at the two-principal adult tertiary government hospitals in Freetown, Sierra Leone. Participants were followed up at 7, 90 days, and 1 year post-stroke to capture all-cause mortality and EQ-5D-3L data. QALYs were calculated at the patient level using EQ-5D-3L utility values and survival data from the register, following the area under the curve method. Utilities were based on the UK and Zimbabwe (as a sensitivity analysis) EQ-5D value sets, as there is no Sierra Leonean or West African value set. Explanatory models were developed based on previous literature to assess variables associated with HRQoL and QALYs at 1 year after stroke. To address missing values, Multiple Imputation by Chained Equations (MICE), with linear and logistic regression models for continuous and binary variables, respectively, were used. EQ-5D-3L data were available for 373/460 (81.1%), 360/367 (98.1%), and 299/308 (97.1%) participants at 7, 90 days, and 1 year after stroke. For stroke survivors, median EQ-5D-3L utility increased from 0.20 (95% CI: -0.16 to 0.59) at 7 days post-stroke to 0.76 (0.47 to 1.0) at 90 days and remained stable at 1 year 0.76 (0.49 to 1.0). Mean QALYs at 1 year after stroke were 0.28 (SD: 0.35) and closely associated with stroke severity. Older age, lower educational attainment, patients with subarachnoid hemorrhage and undetermined stroke types all had lower QALYs and lower HRQoL, while being the primary breadwinner was associated with higher HRQoL. Sensitivity analysis with the Zimbabwe value set did not significantly change regression results but did influence the absolute values with Zimbabwe utility values being higher, with fewer utility values less than 0. We generated QALYs after stroke for the first time in an African country. QALYs were significantly lower than studies from outside Africa, partially explained by the high mortality rate in our cohort. Further research is needed to develop appropriate value sets for West African countries and to examine QALYs lost due to stroke over longer time periods. The Stroke in Sierra Leone anonymized dataset is available on request to researchers, see data access section.

Understanding caregiver burden and quality of life in Kerala’s primary palliative care program: a mixed methods study from caregivers and providers’ perspectives

BackgroundFamily caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses’ perceptions of the family caregivers’ issues.MethodsWe did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews.ResultsOlder caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854–0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907–0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912–0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970–0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this.ConclusionIn our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.

Sex differences in health-related quality of life and poverty risk among older people living with HIV in Spain: A cross-sectional study.

Current antiretroviral therapies have increased the life expectancy of people living with HIV (PLHIV). There is, however, limited evidence regarding the health-related quality of life (HRQoL) and living conditions of older people living with HIV (OPLHIV) in Spain. We implemented a self-administered online questionnaire to identify sex differences in HRQoL and poverty risk among Spanish OPLHIV (PLHIV ≥50 years). Participants were contacted through non-governmental organisations. We used the standardised WHOQoL-HIV BREF questionnaire and the Europe 2020 guidelines to estimate HRQoL and poverty risk respectively. The statistical analysis included multivariable generalised linear models with potential confounding variables and robust estimates. The study included 247 OPLHIV (192 men and 55 women). On the WHOQoL-HIV BREF questionnaire, men scored higher on 84% of items and in all six domains. Women had significantly lower HRQoL in five domains: physical health (β: -1.5; 95% CI: -2.5, -0.5; p: 0.002), psychological health (β: -1.0; 95% CI: -1.9, -0.1; p: 0.036), level of independence (β: -1.1; 95% CI: -1.9, -0.2; p: 0.019), environmental health (β: -1.1; 95% CI: -1.8, -0.3; p: 0.008), and spirituality/personal beliefs (β: -1.4; 95% CI: -2.5, -0.3; p: 0.012). No statistical differences were found in the domain of social relations. Poverty risk was considerable for both men (30%) and women (53%), but women were significantly more likely to experience it (OR: 2.9; 95% CI: 1.3, 6.5; p: 0.009). The aging of PLHIV is a public health concern. Our findings indicate that HRQoL and poverty risk among Spanish OPLHIV differ significantly by sex. Spain should, therefore, implement specific policies and interventions to address OPLHIV needs. The strategies must place a high priority on the reduction of sex inequalities in HRQoL and the enhancement of the structural conditions in which OPLHIV live.

Health-related quality of life in non-alcoholic fatty liver disease: A cross-cultural study between Spain and the United Kingdom.

It is unclear what biopsychosocial factors influence the impact of NAFLD on health-related quality of life (HRQoL), and if these factors are equally important predictors between different nationalities. HRQoL (CLDQ) was measured in both Southern European (Spain, n = 513) and Northern European (United Kingdom -UK-, n = 224) cohorts of patients with NAFLD in this cross-sectional study. For each cohort, participant data were recorded on histological grade of steatohepatitis, stage of fibrosis and biopsychosocial variables. Regression analysis was used to explore which of these variables predicted HRQoL. Moderated mediation models were conducted using SPSS PROCESS v3.5 macro. Participants with severe fibrosis reported more fatigue, systemic symptoms and worry, and lower HRQoL than those with none/mild fibrosis, regardless of place of origin. In addition, body mass index (BMI) and gender were found to be significant predictors of HRQoL in both Spanish and UK participants. Female gender was associated with worse emotional function, higher BMI and more fatigue, which predicted lower participants' HRQoL. UK participants showed more systemic symptoms and worry than Spanish participants, regardless of liver severity. The negative effects of gender on HRQoL through emotional function, BMI and fatigue were reported to a greater degree in UK than in Spanish participants. UK participants showed a greater impairment in HRQoL as compared to Spanish participants. Higher fibrosis stage predicted lower HRQoL, mainly in the Spanish cohort. Factors such as female gender or higher BMI contributed to the impact on HRQoL in both cohorts of patients and should be considered in future multinational intervention studies in NAFLD.

Health-related quality of life among paediatric patients with coarctation of the aorta: an observational study

ABSTRACT Advancements in early diagnosis and paediatric cardiac surgery have improved the long-term survival of patients with congenital heart disease, necessitating a thorough assessment of their health-related quality of life (HRQoL). This study aimed to assess HRQoL in paediatric patients with coarctation of the aorta (CoA) (both as reported by patients and caregivers), and to evaluate associated factors. Patients aged 5–18 years diagnosed with CoA and their parents were enrolled at Bambino Gesù Children’s Hospital between September 2016 and December 2017. Socio-demographic characteristics were recorded using a family form, and the Pediatric Quality of Life Inventory (PedsQL) 3.0 cardiac module was used to evaluate HRQoL. Clinical data were retrieved from medical chart reviews. In this observational study, sixty-five pediatric patients (39 males, median [IQR] age 12 [9–14]) with CoA and their parents (65 mothers and 65 fathers) were enrolled. These patients exhibited overall good HRQoL. Mothers reported significantly lower total HRQoL scores compared to patient self-reports (p = .037), as well as treatment anxiety (p = .033), and cognitive problems (p = .021). Pediatric patients with CoA perceived their HRQoL better than their mothers did. Female sex and older age were associated with lower HRQoL scores.

Effect of a gamified mobile-based self-management application on disease activity index, quality of life, and mental health in adults with inflammatory bowel disease: A protocol of a randomized controlled trial study.

Inflammatory bowel disease (IBD) is a chronic inflammatory gastrointestinal tract disease subdivided into Crohn's disease (CD) and ulcerative colitis (UC). There is currently no cure for IBD, and individuals with IBD frequently experience a lower health-related quality of life (HRQOL) than the general population. Gamification has become an increasingly popular topic in recent years. Adapting game design concepts to nongaming contexts represents a novel and potential approach to changing user engagement. This study will be conducted with the aim of evaluating the effect of a gamified mobile-based self-management application on disease activity index, quality of life, and mental health in adults with IBD. A multicenter, parallel, two-arm, exploratory randomized controlled trial with a 6-month follow-up per patient will be designed to compare the impact of the gamified mobile-based tele-management system on primary and secondary health outcomes and outpatient visits in 210 patients with all types of IBD which are divided equally into a control group with standard care and an intervention group which will use the developed mobile application named MY IBD BUDDY. All patients will attend study visits at baseline, 12 and 24 weeks, and routine IBD clinic visits or telephone consultations based on randomization group assignment. Disease activity or disease activity index, mental health (anxiety and depression) symptoms, quality of life, self-efficacy, and IBD-specific knowledge will be measured at baseline with two follow-ups at 12 and 24 weeks. In sum, the outcomes of our trial will demonstrate the impact of the gamified mobile-based self-management system on disease activity, quality of life, and anxiety and depression by means of interactive care and patient empowerment. IRCT: IRCT20200613047757N1. Registered November 16, 2021. Prospectively registered and visible at OSF (https://doi.org/10.17605/OSF.IO/AWFY9).

A domain specific health-related quality of life of omani patients living with chronic wounds

AimChronic wounds, defined as wounds that do not heal in a logical set of stages, impact patients’ quality of life by disrupting their self-esteem, sleep, social interaction, work capacity, and psychological well-being. Chronic wounds are a prevalent problem in Oman due to the high number of patients with diabetes, sickle cell disease, road traffic accidents, and decubitus ulcer. Therefore, it is paramount to analyse the health-related quality of life (HRQOL) of these patients with chronic wounds. Material and methodsAn observational, cross-sectional, descriptive study with a quantitative approach was conducted among 275 adult patients with chronic wounds in three tertiary hospitals of Muscat from June to December 2021 using a self-reported Cardiff life wound impact questionnaire and the Bates-Jensen wound assessment tool. Data were analysed with IBM SPSS version 23 using inferential statistics and chi-square test. ResultsWe found that the majority of participants were men (178; 64.7 %), aged between 41 and 60 years (107; 38.9 %), predominantly with diabetic wounds (80; 29.1 %). Respondents reported poor HRQOL across all domains: well-being (63.24 ± 18.092), physical (53.24 ± 18.387), and social (59.54 ± 19.025). Statistically significant poorer HRQOL was observed among the elderly above 60 years, illiterates, those with traumatic wounds, and those receiving medication and dressing as treatment. ConclusionsOur findings indicate that Omani patients with chronic wounds experience low HRQOL. It is imperative for healthcare providers to offer comprehensive care to these patients. To enhance their quality of life and alleviate suffering, evaluating both the wounds and HRQOL is essential. Such assessments will enable the optimisation of treatment and coping strategies for patients.

Quality of life among residents of informal urban settlements during the COVID-19 pandemic in Salvador, Brazil

BackgroundDisadvantaged populations, especially those living in rural and informal settlements, constitute the most affected during the COVID-19 pandemic. However, there is limited information on the health-related quality of life (HRQOL)...

Health-related quality of life and fatigue in children with Pompe disease.

ObjectivePompe disease is an inheritable metabolic myopathy caused by the deficiency of the lysosomal enzyme acid-⍺-glucosidase. The aim of this study was to investigate self-reported and parent-reported health related quality of life (HR-QOL) and fatigue in children with Pompe disease. Study designIn this cross-sectional study, the validated child health questionnaire (CHQ) and PedsQol multidimensional fatigue scale (PedsQol MFS) were used to respectively measure (both self-reported and parent-reported) HR-QOl and fatigue in children with Pompe disease. ResultsIn total, 24 Pompe patients with a median age of 9.6 years [IQR: 7.7-11.9], 14 had classic infantile Pompe disease. Self-reported HR-QOL was comparable to the healthy Dutch population on most domains, classic infantile patients scored mainly lower on physical functioning. Parents of classic infantile patients reported a significantly lower HR-QOL of their children on 9 domains, parents of non-classic patients on 5 domains.Self-reported fatigue levels in children with classic infantile Pompe disease were increased for 2 of 3 domains compared to healthy peers, fatigue in non-classic infantile Pompe patients did not differ. Parents of classic infantile patients reported higher levels of fatigue in all 3 domains compared to healthy children, whereas parents of childhood onset children scored higher on the cognitive fatigue domain. ConclusionChildren with Pompe disease report comparable HR-QOL on most domains compared to healthy peers. Contrarily, parent-reported HR-QOL was substantially lower on most domains compared to references values. As expected in relation to disease severity, unfavorable effects on HR-QOL and fatigue were more pronounced in classic infantile Pompe patients.