Health-related Quality Of Life Scores Research Articles

Exploring Health-Related Quality of Life in Patients with Anal Fistulas: A Comprehensive Study.

Anal fistulas often cause significant impairment to patients' health-related quality of life (HRQOL). This cross-sectional study aimed to compare the HRQOL between patients with anal fistulas with inflammatory bowel disease (IBD) and those without, hypothesizing significant differences in HRQOL scores between these groups. The secondary objectives were to identify specific aspects of life quality most affected and explore potential variables influencing HRQOL. The study was conducted at the Clinical Emergency Hospital "Pius Brinzeu" in Timisoara, Romania, using a convenience sample of 175 adult patients diagnosed with anal fistulas, stratified into IBD and non-IBD groups. Quality of life was evaluated at initial hospital admission and three months post-treatment using four questionnaires: SF-36, GIQLI, HADS, and the WHOQOL-BREF. Initial SF-36 scores were marginally lower in the IBD group, with mean physical and mental scores of 52.0 and 54.5, respectively. Both groups showed an improvement after intervention, but the mean difference was higher in the IBD group, with an increase of 1.1 in physical score. Initial GIQLI scores were significantly lower in the IBD group (110) compared to the non-IBD group (116). Post-intervention, the mean scores increased to 116 and 121, respectively. HADS scores suggested higher anxiety levels in the non-IBD group (7.5 vs. 6.1), although depression scores were similar. Post-intervention, anxiety scores decreased more substantially in the non-IBD group (-0.9 vs. -0.3). The WHOQOL-BREF scores were lower across all domains for the IBD group at the initial test (physical health: 12.4, psychological health: 14.9, social relationships: 14.4, environment: 13.0). Post-intervention, scores increased marginally in the IBD group (physical health: 12.7, psychological health: 15.9, social relationships: 14.1, environment: 13.8) but varied in the non-IBD group. HRQOL, as measured by multiple questionnaires, is impacted differently in anal fistula patients with and without IBD. These findings highlight the importance of a tailored approach to managing this patient population to improve their quality of life post-treatment.

Health-related quality of life of metastatic prostate cancer patients treated with prostate Radiotherapy

BackgroundThe impact of prostate radiotherapy on patient-reported health-related quality of life (HRQoL) significantly influences the outcomes of metastatic prostate cancer. We measured and compared HRQoL of metastatic prostate cancer patients who received cytoreductive prostate radiotherapy.MethodsBetween November 23, 2020, and November 21, 2022, we recruited 70 metastatic prostate cancer patients at the Department of Clinical Oncology at Suez Canal University Hospital. Patients were eligible if they had synchronous and metachronous histopathological confirmed metastatic adenocarcinoma and an Eastern Cooperative Oncology Group performance status ≤ 2. Random allocation was performed for either definitive local radiotherapy concurrent with the standard androgen deprivation therapy (ADT) or to the standard ADT alone. Definitive radiotherapy was delivered conventionally (70 Gy/35 fractions) or through the hypofractionated regimen (55 Gy/20 fractions). Patients completed the comprehensive European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-PR25) at baseline, then at three-month intervals for one year. The primary endpoint was patient-reported HRQoL, with secondary endpoints including toxicity and radiographic progression-free survival (rPFS). Mean HRQoL scores between groups were compared using the independent samples t-test.ResultsWe observed clinically significant improvements in urinary and bowel functions between baseline, 3-month, 6-month, and 12-month intervals after receiving definitive prostate radiotherapy. Patients in the radiotherapy group had significantly lower urinary symptoms scores than the control group. However, sexual activity and functioning showed significant deterioration.ConclusionCytoreductive prostate radiotherapy in metastatic prostate cancer patients significantly improved urinary functioning, preserved bowel functioning but was associated with worsening of sexual functioning.Trial RegistrationThis trial was registered on (27/04/2023) with pactr.samrc.ac.za, PACTR202305854600529, URL: https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=25510.

Patient-reported health-related quality of life outcomes following mastectomy for breast cancer, with immediate, delayed or no breast reconstruction: Four-year follow-up from a prospective cohort study.

Breast reconstruction (BR) improves women's health-related quality of life (HRQOL) following mastectomy for breast cancer, yet factors contributing to improved HRQOL remain unclear. This study aimed to explore the overall impact of mastectomy with or without BR on participants' perceptions of HRQOL over time in a cohort of women with high-risk breast cancer; to examine differences in mean HRQOL scores between immediate BR, delayed BR and no BR groups; to assess the influence of patient characteristics potentially associated with HRQOL scores; and to determine the feasibility of long-term collection of patient-reported outcome measures in clinical settings. A prospective, longitudinal study of 100 women with high-risk breast cancer who underwent mastectomy with or without breast reconstruction and were likely to require post-mastectomy radiotherapy. Four validated patient-reported questionnaires, comprising 21 outcome measures relating to HRQOL, administered at baseline and up to 4 years post-mastectomy. Demographic, clinical and surgical data extracted from patient medical records. Consistently significant declines in perceptions of future health and arm symptoms, consistently significant improvements in treatment side effects, breast symptoms and fatigue, as well as significant improvements, compared to baseline, in social functioning and financial difficulties at 48 months. No significant differences in mean HRQOL scores between women given a choice of reconstructive options. Similar trajectories of HRQOL scores were found in women with high-risk breast cancer who were offered a choice of BR. Informed choice may be an independent contributing factor in long-term maintenance of most HRQOL indicators at their pre-mastectomy levels.

Subjective Cognitive and Communicative Complaints and Health-Related Quality of Life in Parkinson's Disease with and without Mild Cognitive Impairment

IntroductionMild Cognitive Impairment (MCI) is common in Parkinson's Disease (PD). Few studies have compared the Health-Related Quality of Life (HRQoL) in patients with and without MCI due to PD (PD-MCI), and its correlation to patients’ subjective cognitive and communicative difficulties has not been explored. ObjectiveWe aimed to compare HRQoL in PD-MCI and PD without MCI (PD-nMCI), and explore its possible relationship to subjective cognitive and communicative complaints. MethodsWe included 29 PD-nMCI and 11 PD-MCI patients. The HRQoL was assessed with the Parkinson's Disease Questionnaire-39 (PDQ-39): its Cognition dimension was used as a measure of subjective cognitive complaints, its Communication dimension for subjective communicative complaints, and the summary index (PDQ-39 SI) as an indicator of HRQoL. Non-parametric partial correlations between the Cognition and Communication dimensions, and the adjusted PDQ-39 SI were conducted. ResultsPD-MCI patients had greater subjective cognitive and communicative complaints and worse HRQoL than PD-nMCI patients. In the PD-MCI group, both subjective cognitive and communicative complaints exhibited significant direct correlations with the adjusted HRQoL scores. ConclusionsHRQoL seems to be affected in PD-MCI, and it might be influenced by greater subjective cognitive and communicative complaints. Including patient-reported outcome measures of HRQoL, and providing cognitive and speech rehabilitation, as well as psychotherapeutic strategies to face these deficits can enhance the patient-centred approach in PD.

Final Analysis of a Phase III Controlled Randomized Study of Stereotactic Body Proton Therapy or Conventionally Fractionated Proton Therapy for Early Prostate Cancer: PCG GU002

To determine if stereotactic body proton therapy (SBPT) is non-inferior to conventionally fractionated proton therapy (CFPT) in patients with early prostate cancer. Multicenter, randomized, controlled, open-label, non-inferiority phase 3 trial that included patients with histologically confirmed low-risk prostate adenocarcinoma defined by Gleason score ≤6, PSA <10 ng/mL, and clinical stage T1-2a N0 M0 by AJCC 7th Ed. Eligible participants were randomly assigned (initially 1:1 and later 2:1 ratio) to CFPT (79.2 Gy in 44 fractions for 9 weeks) or SBPT (38 Gy in 5 fractions for 1 week). Concurrent or adjuvant androgen deprivation therapy was not allowed. The primary endpoint was freedom from failure (FFF) at 2 years, defined as the first occurrence of local, regional, or distant recurrence, biochemical failure by the Phoenix definition (increase of PSA ≥2 ng/mL over the nadir PSA), or the start of salvage therapy including ADT. Secondary endpoints included GI and GU grade ≥2 toxicity according to CTCAE v4 criteria, as well as health-related quality of life (HRQoL) metrics assessed by AUASI and EPIC scores. Non-inferiority would be declared if the 1-sided 95% confidence interval limit for the difference in 2-year FFF rate was below 4.2% between both groups by Clopper-Pearson exact method. Between November 2010 and September 2020, 133 patients were enrolled and randomly assigned to CFPT (n = 45) or SBPT (n = 88). Median follow-up was 5 years (IQ 3.9-5.2), with the last patient enrolled followed for at least 2 years. The 2-year FFF was 100% for both groups, fulfilling the pre-specified criteria for non-inferiority of SBPT compared to CFPT. By KM estimates, 5-year FFF was 97.4% and 100% (P = 0.1), and the 5-year OS was 97.1% and 95.5% (P = 0.46) for patients treated with CFPT and SBPT, respectively. The cumulative incidence of any grade ≥3 toxicities at 5 years was 0% and 5.7% (P = 0.14) for patients treated with CFPT and SBPT, respectively. The frequency of GI grade ≥2 toxicity at 6 months was of 0% and 2.3% (P = 0.55), and at 2 years was of 6.7% and 3.4% (P = 0.69) for patients treated with CFPT and SBPT, respectively. The frequency of GU grade ≥2 toxicity at 6 months was of 2.2% and 5.7% (P = 0.42), and at 2 years was of 8.9% and 5.7% (P = 0.54) for patients treated with CFPT and SBPT, respectively. Changes in HRQoL scores at 2 years were similar between groups (Table). SBPT is non-inferior to CFPT regarding FFF and associated with similar long-term toxicity rates and HRQoL metric scores.

Effects of Comprehensive Geriatric Assessment (CGA) Guided Care vs. Usual Care on Overall Survival (OS) and Health-Related Quality of Life (HRQL) for Older Adults with Cancer: A Systematic Review of Randomized Trials (RCTs)

There is evidence from RCTs demonstrating that our current models of CGA guided care can reduce treatment related toxicity effectively. However, it is unclear if CGA guided care can improve OS and HRQL. We aimed to determine the effect of CGA guided care compared with usual care on OS and HRQL. We searched MEDLINE, EMBASE, CENTRAL and CINAHL from date of inception to October 2022 for RCTs comparing CGA guided care with usual care for patients with cancer who were 60 years old and greater on OS and HRQL. We assessed the risk of bias using Cochrane ROB 2 tool. We performed the meta-analysis using random-effects models. The I2 statistic was adopted to assess heterogeneity between studies. We adopted the Synthesis without meta-analysis approach for data not amenable for meta-analysis. The certainty of evidence was rated using the GRADE approach. This study is registered with Cochrane Database of Systematic Reviews. We found 15 eligible RCTs including 3507 participants. There are variations in types of CGA used with 4 trials using CGA to recommend oncology treatment regimen and 10 trials making no recommendation on oncology treatment. The implementation of CGA recommendations were carried out by a geriatrician in 14 trials, but by the primary oncologist in 1 trial. Six, five and four RCTs were judged to have low, unclear and high risk of bias respectively. Eleven and six RCTs reported OS and HRQL outcomes respectively. There was no significant difference between CGA guided and usual care for OS (Hazard Ratio 1.02, 95% CI (0.90 to 1.15), I2 = 0%; moderate certainty). There was significant variation in the measurement of HRQL in terms of instruments, summary measures and time points. EORTC QLQ C30 and ELD 14 were used in 3 RCTs. The effects of CGA guided care on HRQL were inconsistent. Two trials using FACT-G or Elderly Functional Index (ELFI) reported significant improvement in HRQL at 3 and 6 months post randomization. Meta-analysis of the mean difference in the change of the EORTC QLQ C30 and E14 HRQL scores relative to baseline at 6 months post randomization demonstrated no significant difference between CGA guided and usual care for HRQL across various domains (moderate certainty evidence). The current models of CGA guided care did not improve OS and had variable effects on HRQL when compared to usual care in older patients with cancer. The inconsistent effects of CGA guided care on HRQL suggest that CGA guided care may have more significant effects on the social and functional outcomes domains, aspects of HRQL that is predominantly measured in FACT-G and ELFI score respectively. There is also heterogeneity in how CGAs are performed and implemented. Future research should focus on developing new models of CGA guided care to improve OS and HRQL.

Properties of the CP-QOL-PCQ to measure health-related quality of life in children and adolescents with cerebral palsy in Argentina

The impact of cerebral palsy (CP) on quality of life requires the incorporation of subjective assessments of health, functional status, and well-being. A specific health-related quality of life (HRQoL) measure for CP is the Australian CP-QOL questionnaire, whose version for caregivers (PCQ) was adapted in Argentina. This study aimed to achieve the final structure and evaluate the reliability and validity of the CP-QOL-PCQ for the Argentine child and adolescent population. 100 caregivers of people from 3 to 24 years old with a diagnosis of CP from Argentina participated. In addition to the CP-QOL-PCQ, the KIDSCREEN-27 questionnaire was applied. Analysis of response distributions of all items, inter-item correlations, and internal consistency of the scales were performed using Cronbach's alpha. The convergent validity of the instrument was tested through the correlation with scales of similar content from the KIDSCREEN and through a priori hypotheses in groups of different ages and functional impairment. A final structure of the CP-QOL-PCQ was achieved with 8 multidimensional scales, with satisfactory inter-item correlations (>0.30) and internal consistency (>0.70). Moderate and high correlations (r>0.30) were obtained between similar dimensions of the CP-QOL-PCQ and the KIDSCREEN with similar concepts. Higher HRQoL scores were confirmed at a younger age and at a lower level of functional impairment (Cohen's d >0.20). This provides evidence of reliability and validity to be expected for a HRQoL measurement instrument that can be implemented in the Argentine child and adolescent population with CP.

Health-Related Quality of Life after Combined External Beam and Either High Dose Rate (HDR) or Low Dose Rate (LDR) Brachytherapy: Does the Rectal Dose from the LDR Brachytherapy Make a Difference?

The recently reported randomized Phase III trial comparing health related quality of life (HRQOL) after combined external beam radiation therapy (EBRT) and either HDR or LDR brachytherapy (BT) found a significant decline in the EPIC Bowel domain HRQOL score at 24- 48 months after treatment in the LDR arm of the trial. As all patients in the trial received the same EBRT dose, and HDR rectal dose was strictly controlled to be <9.5 Gy to 1cc of rectal wall (RD1cc), we investigated whether the variable rectal dose from the LDR component of treatment was related to the decline in Bowel HRQOL for these patients. A total of 195 men with upper tier intermediate or high-risk prostate cancer were assigned by a random number generator to receive either an HDR (15 Gy, n = 108) or LDR (110Gy, n = 87) brachytherapy boost combined with 46Gy/23 fractions EBRT. All LDR patients had 1 month post implant quality assurance using CT-MRI fusion. The Expanded Prostate Cancer Composite (EPIC) questionnaire was used to evaluate HRQOL at baseline, q3 mo for 1 year, q6mo for 3 yr and then annually. A multivariate linear regression model was used to investigate the dose-response relationship between EPIC bowel domain score at 24- 48 months and RD1cc. With a median follow up of 48 months, the previous analysis confirmed the expected time course of acute bowel/urinary symptoms, with LDR showing more prolonged decline in HRQOL bowel domain at 3 and 6 months, but equivalence to HDR by 12 months. HRQOL urinary domain remained equivalent from 12-60 mo. The decline in the HRQOL bowel domain observed for LDR patients from 24-48 mo was analyzed for the 79 patients with sufficient data. The mean baseline HRQOL bowel domain score was 92 and fell on average to 85 at 24-48 mo. Mean RD1cc for the LDR patients was 82Gy (SD 22 Gy), with a maximum value of 129 Gy. In this range of rectal doses, a 20Gy increase in RD1cc, was associated on average with a 1.5-point decrease in EPIC HRQOL bowel domain score (p = 0.21). The rectal dose received by the LDR patients showed a non-significant dose-response with the EPIC Bowel domain HRQOL score. This confirms the accepted rectal dose constraints for LDR brachytherapy but does not explain the observed decline in bowel scores from 24-48 months.

Trends in Racial and Ethnicity Disparities in the Health-Related Quality of Life in Older Adults with Breast Cancer: A SEER-MHOS National Database Study

To examine racial and ethnic disparities in Health-Related Quality of Life (HRQOL) in older adults with breast cancer, both pre- and post-diagnosis. Using the Surveillance, Epidemiology and End Results-Medicare Health Outcomes Survey (SEER-MHOS) database, we included patients > 65 years old with breast cancer diagnosed from 1998-2019, who had completed the Health Outcomes Survey within 24 months pre- and post-diagnosis, and who had a reported ethnicity of non-Hispanic White (W), non-Hispanic Asian or Pacific Islander (API), non-Hispanic Black or African American (B), or Hispanic (H). HRQOL data was measured by the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores from the Medical Outcomes Study Short Form-36 and the Veterans RAND 12-Item Health Survey instruments. Univariable (UVA) and multivariable (MVA) linear regression models were fitted for MCS, PCS, and TCS (composite MCS and PCS) as response variables to assess for potential disparities between races and ethnicities. MVA models were adjusted for sex, age, marital status, education, income, number of comorbidities, limitations in activities of daily living, national region, histology, and treatment type (in post-diagnosis cohort only). We identified 1,008 in the pre-diagnosis cohort (56.6% stage I, 29.8% stage II, 9.3% stage III, and 4.3% stage IV) and 991 patients in the post-diagnosis cohort (58.3% stage I, 28.6% stage II, 9.3% stage III, 3.8% stage IV). On UVA, differences in mean scores of TCS, PCS, and MCS, respectively, were found among W, API, B, and H patients in both pre-diagnosis and post-diagnosis cohorts (pre-diagnosis - TCS: 93.4, 93.0, 87.0, 86.3; PCS: 40.3, 40.0, 37.0, 37.5; MCS: 53.1, 52.9, 50.0, 48.7; post-diagnosis - TCS: 90.8, 90.3, 84.3, 83.5; PCS: 38.5, 39.2, 36.8, 34.5; MCS: 52.3, 51.1, 49.8, 46.8; all p < .001). A drop in PCS, MCS, and TCS scores numerically was observed for all groups. Among patients in the pre-diagnosis cohort who would be diagnosed with stage IV breast cancer, race was found to be a predictor of PCS with overall significance (p = 0.04) within MVA linear regression. Specifically, on the local test, compared to B, W had higher pre-diagnosis PCS scores (+13.32, p = 0.03). Race was not found to be a predictor in PCS, MCS, or TCS scores otherwise. Among older patients who would be diagnosed with stage IV breast cancer, W had better physical HRQOL as compared to B patients' pre-diagnosis. The decrease in numerical HRQOL scores of the physical domain in all groups post-diagnosis highlights the potential negative physical impact breast cancer has on patients, demonstrating the need for determining the proper resources and support to improve physical HRQOL following diagnosis.

Anxiety and Depression and Health-Related Quality of Life in Adults with Gastroesophageal Reflux Disease: A Population-Based Study.

Adults with gastroesophageal reflux disease (GERD) are susceptible to mental disorders that might significantly affect their health-related quality of life (HRQoL). Therefore, the purpose of this study was to evaluate how HRQoL in individuals with GERD is related to coexisting anxiety and depression. A cross sectional study was conducted among 3068 adult patients 22 years of age and older with GERD diagnoses have been identified using the data from the Medical Expenditure Panel Survey from 2017 to 2020 for United States adults. Data are gathered by MEPS using an overlapping panel design over a period of two and a half years. HRQoL was established using the Physical and Mental Component Summary (PCS & MCS) values from the SF-12. Multivariate forward linear regression analysis was used to assess the relationship between anxiety, depression, and HRQoL in people with GERD after accounting for various factors. Of the 3068 people with GERD who had been identified, 56.4% were women, 59.4% were in their 50s or 60s and 64.8% were employed. Thirteen per cent of people with GERD had depression, thirteen per cent had anxiety, and ten per cent had both. Adults with concurrent anxiety and depression had the lowest mean PCS and MCS scores compared to those with GERD. After adjusting for all independent factors, GERD patients with anxiety (MCS = -10.819, p-value < 0.0001), depression (MCS = -6.395, p-value < 0.0001), and both (MCS= -42.869, p-value < 0.0001) had substantially worse HRQoL than those without these comorbidities. Notably, better HRQoL scores were positively associated with marital status, employment, perceived overall health, and physical activity. The results from this nationally representative sample shed insight into the relationships between low HRQoL and anxiety and depression among individuals with GERD. It also demonstrated the detrimental impacts of co-occurring chronic illnesses, low socioeconomic status, and the positive benefits of employment and exercise on HRQoL. This study emphasizes the clinical, policy, and public health implications for better healthcare, allocation of resources, and promotion of lifestyle modifications to improve the HRQoL in patients with GERD.

The Effect of Age-Adjusted Sagittal Alignment on the Result of Posterior Decompression Surgery for Lumbar Spinal Canal Stenosis.

Retrospective case series. The aim of this study was to compare the outcomes of posterior decompression surgery for lumbar spinal canal stenosis (LSS) in patients with preoperative sagittal malalignment (MA) with those without, after adjusting for age and sex. Sagittal balance is an important factor in spine surgery and is thought to affect postoperative outcomes after LSS. However, the relationship between sagittal MA and postoperative outcomes has not been thoroughly examined. We included 533 patients who underwent surgical treatment for LSS and also achieved 2-year follow-up. Patients were categorized into either an MA+ group (69 patients) or a matched-alignment (MA-) group (348 patients) based on age-adjusted preoperative sagittal alignment. We compared the baseline and 2-year postoperative health-related quality of life (HRQOL) using the Visual Analog Scale and Japanese Orthopedic Association Back Pain Evaluation Questionnaire (JOABPEQ) scores. We also calculated clinical efficacy using the minimal clinically important difference based on JOABPEQ scores, and age and sex-adjusted JOABPEQ scores 2 years after surgery. Differences between groups were examined using the Mann-Whitney U test and χ 2 analysis, where applicable. Both groups showed an improved HRQOL after decompression surgery. Similar proportions of patients showed substantial improvement, as estimated by the minimal clinically important difference, in 4 out of 5 subdomains of the JOABPEQ. A significantly smaller proportion of patients in the MA+ group showed substantial improvement in lumbar function. The age and sex-adjusted HRQOL scores 2 years after surgery were lower in the MA+ group, particularly in the lumbar function and social life function subdomains of the JOABPEQ. The effects of posterior decompression surgery alone can still be observed at least 2 years postoperatively for patients with LSS and concomitant sagittal MA. Patients with sagittal MA may experience lower HRQOL than those without this type of MA.

Prevalence and Associated Factors of Sarcopenia in Preretirement Aged With Chronic Nonspecific Low Back Pain

Background: Sarcopenia stands as a prominent health concern, exhibiting a notable correlation with chronic lower back pain among the elderly population, with an observed upward trajectory of both conditions within the preretirement age group. Objective: To examine the prevalence of sarcopenia among individuals in the preretirement age group experiencing chronic nonspecific low back pain, and identify any associated factors. Methods: This descriptive cross-sectional study included 164 participants, aged 50 to 59 years, from the Department of Rehabilitation Medicine, Faculty of Medicine Ramathibodi Hospital, Mahidol University. Patient data encompassing demographics, physical activity (International Physical Activity Questionnaires, IPAQ), and quality of life (European Quality of Life 5-Dimension 5-Level, EQ-5D-5L) were collected. Sarcopenia criteria, following the Consensus of the Asian Working Group of Sarcopenia (AWGS) 2014, were evaluated through bioelectrical impedance analysis, handgrip dynamometry, and/or the 6-meter walk test. Participants with chronic low back pain underwent assessments of pain severity and functionality. Results: Of 164 participants (mean [SD] age, 55.1 [2.6] years; mean [SD] body mass index, 24.7 [4.3] kg/m2), IPAQ responses indicated a range from low to moderate activity levels. The health-related quality of life score (median [range]) from EQ-5D-5L assessments stood at 0.94 [0.34 - 1.00]. Sarcopenia was detected in 10 out of 58 subjects (17.2%) with chronic low back pain, and in 6 out of 106 normal subjects (5.7%). Conclusions: The prevalence of sarcopenia among individuals within the preretirement age group experiencing chronic low back pain was notably high when compared to non chronic low back pain cases, without associated factors.

Supportive eHealth Technologies and Their Effects on Physical Functioning and Quality of Life for People With Lung Cancer: Systematic Review.

Despite advancements in treatment and early diagnosis, people with lung cancer are not living as long as those with other cancers. The more common symptoms of lung cancer, such as breathlessness, fatigue, and depression, can be alleviated by improving patients' physical functioning. Therefore, good symptom management and improved health-related quality of life (HRQoL) are priorities in this patient group. However, current health care services have limited capacity to provide this support. One way to address this issue of health care resources is to empower patients to self-manage their condition using eHealth technologies. The purpose of this review was to identify and assess available research on technologies that support persons with lung cancer to improve or maintain their physical functioning, HRQoL, or both. Six databases-PubMed, Web of Science, CINAHL, MEDLINE, SPORTDiscus, and PsycINFO-were searched from January 1, 1990, to April 30, 2023. Studies were suitable for inclusion if the participants included people with lung cancer aged >18 years who had been exposed to a physical activity, exercise, or training intervention that was delivered via an electronic or web-based application with or without a comparator. Furthermore, the study had to report on the impact of the intervention on physical functioning and HRQoL. Studies that focused on telemedicine without a digital intervention were excluded. The Grading of Recommendations Assessment, Development, and Evaluation system was used to assess the quality of the included papers. Due to the heterogeneity of the studies, a narrative synthesis was undertaken. This review is reported in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A total of 794 papers were initially identified through our search, of which, after screening, 8 (1%) were confirmed suitable for inclusion in the review. As 2 (25%) of the 8 papers reported on different stages of the same study, we included only 7 studies in our analysis. The studies were undertaken between 2010 and 2018 across multiple countries and aimed to develop a technology and test its feasibility or acceptance. The 7 technologies identified included web-based applications, mobile apps, and gaming consoles. The studies demonstrated impact on walking distance, muscle strength, balance, dyspnea symptoms, and cancer-related fatigue. HRQoL scores also showed improvement. The findings indicate that eHealth technologies can positively impact physical functioning and well-being for people with lung cancer, but there are limited studies that demonstrate the impact of these digital interventions over longer periods. None of the studies reported on the implementation or adoption of a mobile health or eHealth intervention in routine clinical practice, highlighting the need for further research in this area. PROSPERO CRD42023414094; https://tinyurl.com/39hhbwyx.

Gender differences in trajectories of health-related quality of life from childhood to adolescence in a 7-year follow-up study in a urban socially disadvantaged sample from Argentina.

The transition from childhood to adolescence is a period of developmental changes, with social influences. Few previous studies have analyzed changes in health-related quality of life (HRQoL) during childhood and adolescence based on longitudinal studies in high-income countries. This study aimed to describe the evolution of HRQoL scores by gender in a school sample over a 7-year period in Argentina. Prospective cohort of children attending fourth grade in public schools. HRQoL was measured using the KIDSCREEN-52 questionnaire. Trajectories of HRQoL were estimated for girls and boys through multilevel models, adjusted by socioeconomic status (SES). The study began in 2014 with a sample of 494 school children, reaching an 85.6% response rate in 2016, 31.4% in 2018, and 41.9% in 2021. Most of the predicted scores are negatively associated with linear age or/and quadratic age, suggesting a decrease in scores over the 7-year follow-up. Interactions between gender and age denote an increase in the differences in scores between girls and boys over time in favor of the latter. For the Index, Physical Well-being, Psychological Well-being, Autonomy, Parent relations, Social support and peers and Financial resources, individuals with medium or high SES have significantly higher scores than those with low SES. HRQoL scores decrease during the transition period from childhood to adolescence, with girls showing the greatest decrease. There were also socioeconomic inequalities in the evolution of HRQoL in a context characterized by social segregation and economic crisis, possibly aggravated by the COVID-19 pandemic.

Apathy Symptoms, Physical and Cognitive Function, Health-Related Quality of Life, and Mortality in Older Patients With CKD: A Longitudinal Observational Study

Apathy reflects diminished motivation, goal-directed behavior, and emotions, as well as less engagement in social interactions. Apathy overlaps with depression and is associated with cognitive decline. In the older individuals with chronic kidney disease (CKD), both depression and cognitive impairments are common, but apathy symptoms have been underreported. We investigated the occurrence of apathy symptoms and their associations with physical and cognitive functioning, health-related quality of life (HRQoL), and mortality in older patients with CKD. Prospective observational cohort study. 180 outpatients aged≥65 years with estimated glomerular filtration rate≤20mL/min/1.73m2 from 5 Dutch nephrology centers. Apathy symptoms at baseline were considered present when a Geriatric Depression Scale's 3-item apathy subscale score was≥2 points. Physical and cognitive functioning, HRQoL (assessed in annual geriatric assessments), and 4-year mortality. Linear regression for cross-sectional associations, linear regression models for longitudinal associations, and Cox regression models for mortality over 4 years of observation. Apathy symptoms were present in 64 patients (36%; 67% men; median age 75.5 years), of whom 32 (50%) had no depressive symptoms. At baseline, the presence of apathy symptoms was associated with significantly more frailty, more functional dependence, less physical capacity, lower visuoconstructive performance, worse delayed recall, and lower HRQoL scores. The presence of apathy symptoms at baseline was also associated with a higher mortality risk (hazard ratio, 2.3 [95% CI, 1.3-4.2], P=0.005 adjusted for age, sex, and high education level), but not with changes in physical and cognitive functioning or HRQoL during the follow-up period. Risk of selection bias and residual confounding. Apathy symptoms were highly prevalent and associated with concurrent lower physical and cognitive status, lower HRQoL, and increased mortality. These findings highlight apathy as a potentially important clinical phenotype in older CKD patients. We observed that older kidney patients often present apathy symptoms, such as less motivation, fewer goal-directed behaviors, fewer emotions, and less social engagement. Prior research has not extensively described apathy in kidney disease. We investigated the link between apathy symptoms and poor outcomes. We measured physical functioning, cognitive functioning, and quality of life. We learned that one-third of our older kidney patients showed symptoms of apathy, only half of whom had symptoms of depression. Patients with apathy symptoms showed lower quality of life and lower physical and cognitive performance. They also had a higher risk of death. These findings highlight the need for awareness of apathy symptoms in older kidney patients.

Health-related quality of life in patients aged 6-18 years with chronic hepatitis C treated with sofosbuvir/velpatasvir.

The aim of this study was to assess the effect of treatment with sofosbuvir/velpatasvir (SOF/VEL) on the health-related quality of life (HRQL) of children with chronic hepatitis C. In the non-commercial, non-randomized, open-label PANDAA-PED study, 50 children aged 6-18 years with chronic hepatitis C were treated with a fixed dose of SOF/VEL. All patients achieved sustained virologic response 12 weeks after the end of treatment (SVR12). Evaluation of HRQL was performed twice: at baseline (before the treatment) and during the SVR12 analysis using the KIDSCREEN-27 questionnaires, which included 5 dimensions of HRQL, for child self-reporting and parent proxy reporting. The normal range for the population was set to T values of 50 ± 10 points. Child-parent agreement was analysed using the intra-class correlation coefficient (ICC) and Bland-Altman test. Mean T values were within the normal range for all dimensions, both before and after treatment. There was a significant improvement in physical well-being based on the children's self-assessment (from 48.53 to 51.21, p = .03). In addition, a trend towards better scores in the 'social support & peers' part of the parent proxy evaluation (from 45.98 to 48.66, p = .06) was noticed. After the treatment, the proportion of children self-assessing their physical well-being as below normal significantly decreased from 17% to 5% (p = .007). HRQL scores were not associated with patients' sex, but in most cases, younger age correlated with better HRQL. Evaluation of the ICC for child self-reports versus parent proxy reports revealed poor to moderate agreement for most single measures. Bland-Altman analysis showed that in all dimensions, both before and after treatment, the limits of agreement (LoAs) exceeded ±5 points (half of the SD and considered a maximum allowed difference). A significant proportion of children with chronic hepatitis C have decreased HRQL in all dimensions, but effective treatment with SOF/VEL leads to an improvement in some areas of well-being. As the effect of HCV on HRQL is more pronounced in older patients, treatment of younger children should be indicated to prevent them from experiencing decreased HRQL due to ongoing HCV infection in the future.

Health-Related Quality of Life and Service Barriers among Adults with Sickle Cell Disease in Saudi Arabia.

The burden of sickle cell disease (SCD) is high in Saudi Arabia, with a significant impact on patients' quality of life (QoL). This study aimed to assess the health-related quality of life (HRQoL) among adults with SCD. A cross-sectional study was conducted among adults with SCD attending hematology clinics at Qatif Central Hospital in the Eastern Province of Saudi Arabia. The questionnaire included subsections to collect information from participants, including sociodemographic attributes, SCD characteristics, HRQoL based on SF-36, and opinions regarding barriers to service. Among 272 SCD patients, the highest mean score of HRQoL was observed in the social functioning (SF) domain (65.0±23.4), whereas the lowest score was observed in the role limitations due to physical health (RP) domain (47.2±40.4). The mean score for participants' opinions regarding service provision was 19.27±4.68 (min-max:10-30), and only 24.6% had a positive opinion regarding the accessibility of service provision. A total of 38.6% of the respondents acknowledged shortcomings in the services offered by healthcare staff, and 43% identified weaknesses in communication with healthcare staff. Moreover, 40.1% agreed about feeling stigmatized about their condition. SCD patients who were <40 years old, males, had a university degree, had health insurance, waited <15 minutes before receiving health care, and had positive opinions regarding service provision were more likely to have better HRQoL scores. Adults with SCD exhibited low HRQoL in general, and different factors were related to low HRQoL scores. Counselling, empowerment, and improvement of doctor-patient communication are important strategies to improve healthcare provision, and consequently, HRQoL among adults with SCD.

Paediatric quality of life in toddlers and children who underwent arterial switch operation beyond early neonatal period.

The aim of this study was to evaluate the quality of life (QOL) of children who underwent the arterial switch operation (ASO) for Transposition of Great Arteries in our population and, specifically, to explore early modifiable factors and the influence of parental and socioeconomic factors on the QOL of these children. Cross-sectional study using Paediatric Quality of Life Inventory™ 3.0 Cardiac Module was carried out on 3- to 12-year-old children who had undergone ASO between the years 2012-2018. Socioeconomic status was calculated using the modified Kuppuswamy scale (2019). Other clinical factors with possible bearing on the outcome were also analysed. Immediate survival after surgery was 196 out of 208 (94.2%) with an attrition of 19 patients (9.6%) over the follow-up period. Most surviving children (98.9%) had started formal schooling in age-appropriate classes. Two children had severe neuromotor impairment. The median cumulative health-related QOL score of the children was 97.9 (interquartile range 4.2) at 5.6 ± 1.27 years of life. The median scores each of the health-related QOL parameters, viz, heart problem symptoms, treatment compliance, perceived physical appearance, treatment-related anxiety, cognitive problems, and communication was 100 with negative skewing. Excellent QOL was observed in most children after ASO with the median total paediatric QOL scores in all domains of 97.9. Social factors did not show a statistically significant influence on the QOL parameters in the current cohort. The gradually declining trend across the age groups emphasizes the need for continued follow-up for early identification of possible correctable factors and initiating intervention to ensure good QOL into teenage and adulthood.

The Dosing of Mobile-Based Just-in-Time Adaptive Self-Management Prompts for Caregivers: Preliminary Findings From a Pilot Microrandomized Study.

Caregivers of people with chronic illnesses often face negative stress-related health outcomes and are unavailable for traditional face-to-face interventions due to the intensity and constraints of their caregiver role. Just-in-time adaptive interventions (JITAIs) have emerged as a design framework that is particularly suited for interventional mobile health studies that deliver in-the-moment prompts that aim to promote healthy behavioral and psychological changes while minimizing user burden and expense. While JITAIs have the potential to improve caregivers' health-related quality of life (HRQOL), their effectiveness for caregivers remains poorly understood. The primary objective of this study is to evaluate the dose-response relationship of a fully automated JITAI-based self-management intervention involving personalized mobile app notifications targeted at decreasing the level of caregiver strain, anxiety, and depression. The secondary objective is to investigate whether the effectiveness of this mobile health intervention was moderated by the caregiver group. We also explored whether the effectiveness of this intervention was moderated by (1) previous HRQOL measures, (2) the number of weeks in the study, (3) step count, and (4) minutes of sleep. We examined 36 caregivers from 3 disease groups (10 from spinal cord injury, 11 from Huntington disease, and 25 from allogeneic hematopoietic cell transplantation) in the intervention arm of a larger randomized controlled trial (subjects in the other arm received no prompts from the mobile app) designed to examine the acceptability and feasibility of this intensive type of trial design. A series of multivariate linear models implementing a weighted and centered least squares estimator were used to assess the JITAI efficacy and effect. We found preliminary support for a positive dose-response relationship between the number of administered JITAI messages and JITAI efficacy in improving caregiver strain, anxiety, and depression; while most of these associations did not meet conventional levels of significance, there was a significant association between high-frequency JITAI and caregiver strain. Specifically, administering 5-6 messages per week as opposed to no messages resulted in a significant decrease in the HRQOL score of caregiver strain with an estimate of -6.31 (95% CI -11.76 to -0.12; P=.046). In addition, we found that the caregiver groups and the participants' levels of depression in the previous week moderated JITAI efficacy. This study provides preliminary evidence to support the effectiveness of the self-management JITAI and offers practical guidance for designing future personalized JITAI strategies for diverse caregiver groups. ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591.

Racial and Ethnic Disparities in Patients With Inflammatory Bowel Disease: An Online Survey.

Data regarding care access and outcomes in Black/Indigenous/People of Color/Hispanic (BIPOC/H) individuals is limited. This study evaluated care barriers, disease status, and outcomes among a diverse population of White/non-Hispanic (W/NH) and BIPOC/H inflammatory bowel disease (IBD) patients at a large U.S. health system. An anonymous online survey was administered to adult IBD patients at Ochsner Health treated between Aug 2019 and Dec 2021. Collected data included symptoms, the Consumer Assessment of Healthcare Providers and Systems and Barriers to Care surveys, health-related quality of life (HRQOL) via the Short Inflammatory Bowel Disease Questionnaire, the Medication Adherence Rating Scale-4, and the Beliefs about Medicines Questionnaire. Medical record data examined healthcare resource utilization. Analyses compared W/NH and BIPOC/H via chi-square and t tests. Compared with their W/NH counterparts, BIPOC/H patients reported more difficulties accessing IBD specialists (26% vs 11%; P = .03), poor symptom control (35% vs 18%; P = .02), lower mean HRQOL (41 ± 14 vs 49 ± 13; P < .001), more negative impact on employment (50% vs 33%; P = .029), worse financial stability (53% vs 32%; P = .006), and more problems finding social/emotional support for IBD (64% vs 37%; P < .001). BIPOC/H patients utilized emergency department services more often (42% vs 22%; P = .004), reported higher concern scores related to IBD medication (17.1 vs 14.9; P = .001), and worried more about medication harm (19.5% vs 17.7%; P = .002). The survey response rate was 14%. BIPOC/H patients with IBD had worse clinical disease, lower HRQOL scores, had more medication concerns, had less access to specialists, had less social and emotional support, and used emergency department services more often than W/NH patients.