Health-related Quality Of Life Measures Research Articles

Impact of Enhanced Recovery After Surgery (ERAS) Protocols on Outcomes Up to Two Years After Adult Structural Spine Disorder Surgery

Study Design. Retrospective cohort study of prospectively enrolled database Objective. We analyze the recovery pattern of Adult Structural Spine Disorder (ASD) patients who underwent corrective surgery with Enhanced Recovery After Surgery protocol (ERAS+), including physical and psychological prehabilitation components, compared to non-ERAS protocol (ERAS-) up to 2-years after surgery. Summary of Background Data. Spine surgery for ASD is often highly invasive, which can contribute to prolonged recovery. The trajectory of recovery may be accelerated by the application of enhanced recovery principles. Methods. Inclusion criteria were operative patients with ASD>18yrs with complete baseline, 90 days perioperative, and 2-year postoperative data. We assessed differences in baseline demographics, surgical details, baseline Health-Related Quality of Life (HRQL), and surgical outcomes between ERAS+ and ERAS- patients. Outcomes included adverse events, reoperations, and radiographic parameters such as sacral slope (SS), pelvic tilt (PT), pelvic incidence-lumbar lordosis (PI-LL) mismatch, sagittal vertical axis (SVA), lumbar lordosis (LL), T2–T12 kyphosis, and maximum Cobb angle. Additionally, HRQL measures included the PCS, ODI, NDI, EQ-5D, SRS-22r total and domain scores, NRS-Back, and NRS-Leg. We used multivariable logistic regression and ANCOVA to adjust for confounding. Results. 471 patients with ASD met inclusion criteria, with 59 designated ERAS+. Those individuals ERAS+ were older (64.1±13.0 vs. 58.0±16.0;P=0.005), had a higher CCI, (2.4±1.8 vs. 1.4±1.6;P<0.001), and exhibited a higher modified ASD frailty index (8.2±5.4 vs. 6.3±4.9;P=0.019). Adjusted analysis demonstrated the ERAS+ cohort demonstrated lower likelihood of overall reoperations (OR:0.3; 95%CI:0.13-0.89), and a lower likelihood of overall adverse events (OR:0.4;CI95%:0.19-0.93). ERAS+ was more likely to achieve the MCID in the SRS-22r Total scores at 6 months(OR:3.1;CI95%:1.2-8.4), self-image domain at 6 months (OR:9.0;CI95%:1.6-50.0), in the pain domain at 6 months (OR:3.5;CI95%:1.01-11.9) and 1 year postoperatively (OR:2.6;CI95%:1.03-6.7), and in the SF-36’s physical component summary scores (PCS) at 1 year (OR:2.1;CI95%:1.05-4.2). No other statistically significant differences in HRQL were observed at the remaining time points (P>0.05). Conclusion. Our work is the first to evaluate HRQL metrics and complication over two-years following ASD correction with ERAS. Despite presenting with more severe baseline frailty and higher comorbidity profiles, patients with ASD who underwent corrective surgery with an ERAS protocol experienced fewer short-term adverse events, and improved HRQL. We believe ERAS following ASD surgery leads to faster functional recovery, reduced postoperative deconditioning, and improved quality of life.

Black men's health-related quality of life: A qualitative study to understand community-identified perception and needs.

Health-related quality of life (HRQoL) is a multidimensional indicator of overall health associated with premature mortality. Black men score low on measures of HRQoL, but it is unclear how Black men conceptualize HRQoL and whether there have been efforts to promote HRQoL among these men. The present qualitative study to understand Black men's conceptualization of HRQoL and strategies to improve HRQoL was based in community-based participatory research and the social-ecological model of health. A community advisory board (CAB) was established, and the need for an effort to promote HRQoL promotion among Black men was assessed and supported. A focus group protocol was developed in conjunction with the CAB and a group of barbers. Seven focus groups were conducted consisting of 56 Black men in the Southeastern United States. The mean age of participants was 45 years. Two reviewers coded each focus group. Reliability ranged from 71% to 76%. A thematic analysis was conducted, and the findings were confirmed with the CAB. Three themes emerged: (a) a holistic conceptualization of health that includes spiritual functioning among Black men; (b) a state of HRQoL among Black men predominately marked by mental health concerns, in addition to physical and social health concerns; and (c) multilevel determinants of HRQoL among Black men. This last theme consisted of three subthemes related to community-level, interpersonal, and intrapersonal determinants of HRQoL. Findings from this study can help inform the development of strategies to improve HRQoL and reduce health disparities among Black men. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Associations between Sexuality, Body Image and Health-Related Quality of Life in Patients Treated for Diffuse Large B-Cell Lymphoma – A Cross-Sectional Study

BackgroundSexuality and body image are closely related to health-related quality of life (HRQoL), but these factors are less investigated in patients treated for lymphoma.Therefore, the aim of this study was to describe and explore the associations between sexuality, body image, comorbidities and HRQoL in patients treated for diffuse large B-cell lymphoma. MethodA cross-sectional study with 257 patients (25% response rate) was conducted in 2019 using measures for sexuality, HRQoL and body image and data from the Swedish National Quality Registry for Leukemia–Subregistry for Lymphoma. ResultsThe participants had a mean HRQoL of 69.75 on a 1 to 100 scale, and the functional scales ranged from 68.50 for Role to 80.82 for Social functioning. The symptoms ranged from 5.56 for nausea and vomiting to 37.73 for fatigue. Regarding body image, the participants scored a total of 14.47 (reference values 10–40). The total score for Sexual adjustment was 3.02, and for the subscales Sexual Interest 2.63, Sexual Relation 2.72, Sexual Function 3.62 and Sexual Satisfaction 3.50. HRQoL was positively associated with Sexual Relation; however, negative body image and comorbidities showed negative associations. The model explains 39.6% of the variation in HRQoL. ConclusionThe positive impact of sexual relationships on HRQoL was highlighted, which emphasised the unfavourable effect of negative body image and comorbidities on HRQoL for lymphoma patients. Cancer nurses should address these topics with patients to improve their long-term well-being.

Development of a novel Patient-Reported Outcome Measure (PROM) for adults with an Inherited Cardiac Condition (ICC)

Abstract Background Research on the quality-of-life (QoL) among patients with inherited cardiac conditions (ICC) is limited. Existing evidence from a systematic review indicates that most studies rely on generic measures of health-related QoL, which may not adequately capture ICC-specific factors. The current study aims to develop a disease-specific patient-reported outcome measure to address this gap. Methods Using a qualitative study design, we first conducted focus groups until data saturation was achieved (n=15). Additionally, an expert panel of healthcare professionals was interviewed to ascertain their perspectives on patient-centered care and to evaluate face validity. Transcripts of all focus groups and interviews were analyzed thematically using Atlas.ti, qualitative analysis software, to identify concepts and formulate survey items for the initial instrument. We used the ‘Centre for Health Promotion’ QoL model, consisting of three domains- Being, Belonging, and Becoming- as the theoretical framework for our analysis. Results Our analysis revealed alignment with specific QoL domains of the overarching framework and identified a gap in genetic-specific domains. A novel overarching theme, genetic well-being, was identified, encompassing specific constructs related to future uncertainty, reproductive concerns, and the anticipation of disease development, thus enriching the conceptualization of QoL in the context of inherited cardiac conditions. The discussion will include an exploration of the face validity of the draft instrument. Conclusion Patients diagnosed with an inherited cardiac condition (ICC) face a spectrum of challenges originating from both disease-related stressors and hereditary factors alike. Recognizing that relying solely on objective clinical assessment may fail to capture the full impact of the disease, there has been an increasing focus on incorporating patient-reported measures into disease evaluation. This qualitative study contributes to developing a comprehensive patient-reported outcome measure tailored to individuals with ICC.PROM development study

Should we measure quality of life among people with HIV? A multicentre survey of physicians' opinions in Spain.

We assessed the opinions of physicians caring for people with HIV (PWH) from the multicentre Spanish CoRIS cohort regarding the assessment of health-related quality of life (HRQoL). We designed an online self-administered questionnaire comprising 27 structured questions across four domains: (i) sociodemographic and clinical data; (ii) usefulness of measuring HRQoL; (iii) information, training and resource needed; and (iv) whether and how HRQoL should be measured. Physicians completed the questionnaire between April and June 2023. Of 131 physicians surveyed [53.8% men, median age 52 years (interquartile range: 42-60)], 90.9% and 88.6% agreed that measuring HRQoL is useful for both PWH and medical decision-making, respectively. However, 67.2% needed training on what HRQoL is and how to measure it, 79.4% required information on validated tools, and 80.9% felt that clinical guidelines are needed. Overall, 90.1% of physicians agreed that HRQoL should be measured among PWH. Most physicians (82.8%) supported using specific scales for PWH, with 74.1% recommending annual measurement, 49.1% suggesting that nurses from HIV units conduct the assessments, and 43.1% favouring personal interviews during medical visits. At the time of the survey, 55.3% of physicians did not measure HRQoL in any patients due to time or resource constraints (75.8%). Despite the recognized importance of HRQoL measurement in PWH, Spanish physicians encounter barriers such as time constraints and limited resources. Developing clear guidelines, using tailored scales, and integrating digital tools along with multidisciplinary support could enhance routine HRQoL assessments and improve patient-centred care.

Assessment of health-related quality of life in individuals with interstitial lung diseases in a tertiary care hospital in south India.

Background & objectives Interstitial lung diseases (ILD) cause progressive symptoms and decline in lung functions which impact health-related quality of life (HRQoL). Although HRQoL is gaining wider acceptance as an endpoint for disease perception, limited data is available regarding the same in Indians with ILD. Hence, this study was undertaken to assess HRQoL and its correlation with lung function parameters in individuals with ILD in a tertiary care setting in south India. Methods A hundred and fifty-nine consecutive patients with ILD were recruited between June 2022 to December 2023. HRQoL was assessed using the ILD specific K-BILD, generic EQ-5D-5L and an adapted version of the validated PESaM questionnaires. Correlation between various domains of the three questionnaires and lung function parameters was analyzed followed by linear regression analysis. Results The study population consisted predominantly of females (64.1%), with CTD-ILD being the most common ILD (40.8%). HRQoL impairment was noted, predominantly affecting the 'breathlessness and activity' domain and significant correlation was noted between K-BILD and EQ-5D-5L across domains. On regression analysis, FVC, 6-minute walk distance and desaturation were independent predictors of HRQoL. Type of ILD and disease duration did not have a significant association with HRQoL measures. Interpretation & conclusions 'Breathlessness and activity' domain of HRQoL was affected the most in participants with ILD. Forced vital capacity, six-minute walk distance and exercise induced desaturation were independent predictors of HRQoL among individuals with ILD.

One-year trajectories of physical and mental health-related quality of life, fatigue and dyspnoea in COVID-19 survivors.

A substantial number of people experience a persisting impact on health-related quality of life (HRQoL) after COVID-19. The current study aims to identify different trajectories of physical and mental HRQoL, fatigue severity, and dyspnoea severity following hospitalisation with COVID-19, and associated factors of these trajectories. 500 patients with COVID-19 were followed for one year in a longitudinal cohort study. Self-reported outcomes were measured at 3, 6, 9, and 12 months after hospitalisation. Distinct trajectories were characterised using Growth Mixture Modelling. Sociodemographic and clinical correlates of trajectories were investigated using multivariable (multinomial) logistic regression analyses. Three trajectories ('stable high' (16%), 'improving' (40%), and 'stable low' (44%)) were found for physical HRQoL, and four ('stable high' (43%), 'improving' (14%), 'middle declining' (17%), and 'low' (26%)) for mental HRQoL. Older age, overweight and obesity, lower education, and comorbidities were associated with 'low' physical HRQoL. Younger age was associated with 'low' mental HRQoL. Four fatigue trajectories ('no fatigue' (15%), 'improving' (40%), 'low-severe' (27%), and 'high-severe' (18%)) were found. Participants either experienced almost never ('no dyspnoea', 75%) or almost always ('severe', 25%) dyspnoea. High co-occurrences between low HRQoL and severe fatigue and dyspnoea symptom trajectories were found. A substantial number of COVID-19 survivors continue to struggle with reduced HRQoL over time. However, large variations in these physical and mental HRQoL trajectories exist, and trajectories are associated with persisting COVID-19-related symptoms or pre-hospitalised health status. Regular measurement of HRQoL and post-COVID symptoms may help identify those that may benefit from timely interventions.

Pulmonary Rehabilitation for Diseases Other Than COPD.

Review the current literature regarding pulmonary rehabilitation (PR) for non-chronic obstructive pulmonary disease (COPD) diagnoses and what the evidence is regarding expected outcomes based on disease manifestations. Literature search was performed using PubMed database from March 2024 to June 2024. Terms included "pulmonary rehabilitation" and "exercise training" in conjunction with key words "interstitial lung disease (ILD)," "idiopathic pulmonary fibrosis," "asthma," "bronchiectasis," "post-acute sequalae of SARS-CoV-2 (PASC)," "long COVID," "pulmonary hypertension (PH)," and "lung cancer." Results were filtered for English language, randomized controlled trial, clinical trial, observational trial, meta-analysis, and guidelines. Emphasis was placed on more recent publications since prior reviews, where applicable. The abundance of literature involved ILD, where studies have demonstrated significant improvements in exercise capacity, health-related quality of life (HRQoL), and dyspnea, despite heterogeneity of diseases; benefits are similar to those seen with COPD. Those with milder disease have more sustained benefits longer term. Patients with asthma benefit in severe disease, lower exercise activity, elevated body mass index, or when comorbid conditions are present, and breathing exercises can improve symptoms of breathlessness. Patients with PASC have a multitude of symptoms and lack benefits in HRQoL measurements; PR improves performance on post-COVID-19 functional status scale, a more comprehensive measurement of symptoms. Those with bronchiectasis benefit from PR when airflow limitation or exacerbations are impacting symptoms and HRQoL. Those with stable PH can improve their exertional capacity without change in disease severity. PR reduces perioperative complications in those with lung cancer and preserve fitness during treatment.

Health-related quality of life in children and adolescents born very preterm and its correlates: a cross-sectional study

ObjectiveWe aimed to assess health-related quality of life (HRQOL) in a cohort of very preterm born children and adolescents (aged 5–16), and to compare it with their fullterm born siblings...

Deriving the PedsUtil health state classification system to measure health utilities for pediatric populations based on the PedsQL: a confirmatory factor analysis.

An important methodological challenge in conducting pediatric economic evaluations is estimating the preference-based health-related quality of life (HRQoL) of children. Current methods are highly variable and there is no single instrument available to value HRQoL consistently across multiple pediatric age groups. The Pediatric Quality of Life Inventory (PedsQL) is a non-preference-based generic HRQoL instrument validated for children 2-18 years, but it cannot be directly used in economic evaluations. The aim of this study was to establish the core dimension structure of the PedsUtil health state classification system using confirmatory factor analysis, which is the first step of deriving a preference-based measure of HRQoL based on the PedsQL. Four competing dimension structures of the PedsUtil health state classification system were developed based on published literature and expert opinion. Using data from the Longitudinal Study of Australian Children (LSAC) (n = 45,207), the 4 dimension structures were evaluated using the robust weighted least squares estimation method. The analyses were stratified by 2-year age intervals (from 2 to 17 years) to reflect the study design of the LSAC, as well as special healthcare needs status of the child. Model fit was evaluated by examining standardized factor loadings and various fit indices including the comparative fit index (CFI), Tucker-Lewis Index (TLI), and the root mean square error of approximation (RMSEA). Modification indices and residual correlations were examined to re-specify the models to improve model fit when necessary. The findings supported a 7-dimension structure (i.e., Physical Functioning, Pain, Fatigue, Emotional Functioning, Social Functioning, School Functioning, and School Absence) of the PedsUtil health state classification system. The 7-dimension model exhibited adequate fit across subgroups with CFI values that ranged from 0.929 to 0.954, TLI values from 0.916 to 0.946, and RMSEA values from 0.058 to 0.102. This study established the core dimension structure of the PedsUtil health state classification system using confirmatory factor analysis. The 7-dimension structure was found to be applicable across diverse pediatric populations. Research is currently ongoing to select the most representative item within each dimension of the PedsUtil health state classification system and valuation surveys will be fielded to estimate the PedsUtil scoring system.

A prospective, longitudinal study of health-related quality of life and contributing factors and its impact on medication adherence to oral anticancer agents in real-world patients with leukemia.

270 Background: Suboptimal rates of non-adherence have been reported in leukemia patients taking oral anticancer agents (OAAs), largely attributed to treatment-related symptoms (TRS). This survey was conducted to describe the complex relationship between adherence, TRS, and health-related quality of life (HRQOL). Methods: This is a single arm, observational, prospective, longitudinal study. Patients with acute myeloid leukemia (AML), acute lymphoid leukemia (ALL), chronic myeloid leukemia (CML), and chronic lymphoid leukemia (CLL) on OAAs completed a telephone survey, which included Wilson’s 3-item medication adherence measure, the PROMIS 10-item Global Health Scale (domains: overall QOL, physical/mental/social health), and assessment of TRS using PRO-CTCAE. This survey was repeated three times, two to three months apart. Optimal adherence was defined as greater than 90% per Wilson’s measure. Spearman’s correlation, chi-square tests, as appropriate, to evaluate the association between medication adherence and HRQOL. Results: 77 patients completed the first survey, of which 60.3% were male, with an average age of 62 years old. Diagnoses were: CML (n=28), CLL (n=19), AML (n=19), and ALL (n=11). Optimal adherence rates declined from 70.2% in the 1 st survey to 55% by the 3 rd survey, whereas HRQOL measures remained stable over time. Most patients (92.2%, n= 71) reported at least one TRS with 42.25% (n= 30) reporting ≥6 symptoms. Patients without TRS were more likely to be adherent than those with symptoms (100% vs. 67%, p=0.17). Specifically, patients with no pain were associated with higher adherence (p= 0.084). Those who rated their mental health and overall quality of life (QOL) as ‘excellent,’ ‘very good,’ or ‘good’ had numerically a higher adherence rate (73% with optimal adherence) than those rating it as ‘fair’ or ‘poor,’ (59-61% had optimal adherence), although not statistically significant. The number of TRS reported from PRO-CTCAE significantly affected patients’ reported QOL: patients reporting 0-5 number of TRS were more likely to report higher QOL (‘excellent,’ ‘very good,’ or ‘good’) than those reporting ≥6 TRS (p = 0.0004). Conclusions: Adherence rates in leukemia patients on OAAs were suboptimal and declined over time. TRS were common and inversely associated with HRQOL, even though adherence was not strongly correlated: patients with high adherence still reported fair or poor HRQOL. Given the numerous and varied factors contributing to non-adherence and HRQOL issues in leukemia patients, a multi-modality support program is essential.

Validity And Reliability Of The Central Kurdish Version Of The Tinnitus Handicap Questionnaire (THQ-CK)

Background — The goal of this study was to evaluate the reliability and validity of the Central Kurdish version of the Tinnitus Handicap Questionnaire (THQ-CK). Initially, the THQ was translated into the central Kurdish language, resulting in the THQ-CK. Subsequently, a supplementary assessment was conducted to ascertain the reliability and validity of the THQ-CK. Methods — The original version of the THQ was translated into the Kurdish language and then offered to 275 tinnitus patients. The procedures were performed using published guidelines for cross-cultural adaptation of health-related quality of life measures. The Tinnitus Handicap Questionnaire (THQ), the Tinnitus Primary Function Questionnaire (TPFQ), and the Visual Analogue Scale (VAS) for tinnitus loudness and annoyance were offered to participants suffering from tinnitus. In addition, a pure-tone audiogram was obtained. Results — Our study encompassed a total of 275 patients (132 female, 143 male). Their mean age was 47.43±14.32 years. Of them, 43.6% previously worked in a noisy environment. The internal consistency of the THQ total score and its factors (Cronbach’s alpha of total scores: 0.833; factors: 0.949, 0.959, 0.960) suggested excellent reliability. The test-retest correlation coefficient demonstrated excellent reliability (0.9) for the total scores, and factors 1 and 2, but moderate reliability (0.66) for factor 3. The THQ-CK demonstrated good construct validity, as indicated by the strong correlation (r=0.757) between the THQ-CK and TPFQ scores. Conclusion — The evaluation of the validity and reliability of the THQ-CK suggests that it is a reliable instrument for assessing the impact of tinnitus on individuals in the central Kurdish-speaking population. The study contributes valuable information to the field of tinnitus research and opens up avenues for future cross-cultural studies.

Dose-dependent relationship between levothyroxine and health-related quality of life in survivors of differentiated thyroid cancer

BackgroundLong-term survival for patients with differentiated (papillary, follicular, and Hürthle cell) thyroid cancer exceeds 95% but self-reported health-related quality of life scores remain low compared with survivors of cancers with worse prognoses. There are reports that thyroid hormone replacement therapy is associated with lower health-related quality of life. This hypothesis was tested in a sample of Medicare Advantage survivors of differentiated thyroid cancer. MethodsData were obtained from the linked 2007–2017 Surveillance, Epidemiology and End Results-Medicare Health Outcomes Survey for patients with differentiated thyroid cancer to conduct a cross-sectional study. Levothyroxine 6-month defined daily dose was calculated from claims data. Defined daily dose was classified as low, average, or high on the basis of standard deviations around body mass index–specific means. Veterans RAND 12-item Quality of Life Survey measures were categorized by T score as low health-related quality of life (T scores ≤25), moderately low (25< T scores ≤50), and high (T scores >50). The association of defined daily dose and health-related quality of life was tested using multinomial logistic regression. ResultsAmong patients with differentiated thyroid cancer (n = 782), 67.5% were prescribed levothyroxine for thyroid hormone replacement therapy (mean defined daily dose 123 μg; standard deviation 44.1 μg). Greater defined daily dose was associated with greater relative risk of low (compared with moderately low) health-related quality of life on several measures including Role Limitation (relative risk, 4.9, 95% confidence interval, 2.1–11.6) and Social Functioning (relative risk, 5.6, 95% confidence interval, 2.5–12.5), as well as greater relative risk of multiple low-scoring health-related quality of life measures. ConclusionResults suggest greater-than-average thyroid hormone replacement therapy dosages may be associated with lower health-related quality of life among survivors of differentiated thyroid cancer. Given the prevalence of thyroid hormone replacement therapy among survivors of differentiated thyroid cancer, thyroid hormone replacement therapy dose adjustment warrants close attention to address the functional and psychosocial well-being of patients.

Health-Related Quality of Life Outcomes With Etrasimod Treatment in Patients With Ulcerative Colitis: A Post Hoc Analysis of Data From ELEVATE UC 52 and ELEVATE UC 12.

Etrasimod is an oral, once-daily (QD), selective sphingosine 1-phosphate1,4,5 receptor modulator for the treatment of moderately to severely active ulcerative colitis (UC). Here, we evaluate the impact of etrasimod 2mg QD on health-related quality of life (HRQoL) in patients with UC. This post hoc analysis used data from the Phase 3 randomized controlled trials, ELEVATE UC 52 and ELEVATE UC 12. HRQoL measures included: Inflammatory Bowel Disease Questionnaire (IBDQ), 36-Item Short Form Survey (SF-36), and Work Productivity and Activity Impairment Questionnaire: Ulcerative Colitis (WPAI:UC) completed at baseline, Week 12 (both trials), and Week 52 (ELEVATE UC 52 only). For IBDQ analyses, patients were stratified by prior exposure to biologics/Janus kinase inhibitors (JAKi) and baseline modified Mayo score (MMS; 4-6 or 7-9). Generally, significantly greater proportions of patients receiving etrasimod (N = 527) vs placebo (N = 260) achieved IBDQ remission (IBDQ total score ≥170) and IBDQ response (IBDQ total score increase from baseline ≥16), with significant improvement in all IBDQ domain scores at Week 12 and maintained through Week 52. Significant differences in IBDQ remission and IBDQ response rates between etrasimod and placebo were more consistent among biologic/JAKi-naive patients vs those who were biologic/JAKi-experienced and in those with baseline MMS 7-9 vs 4-6. Significant improvements were observed in several SF-36 domain and summary scores and WPAI:UC domain scores at Week 12 and Week 52. Etrasimod 2mg QD demonstrated significant and clinically meaningful improvements across multiple HRQoL measures, including WPAI, vs placebo. ClinicalTrials.gov: NCT03945188; NCT03996369.

Advancing patient-centered cancer care: a systematic review of electronic patient-reported outcome measures.

Electronic Patient-Reported Outcome Measures (ePROMs) have emerged as valuable tools in cancer care, facilitating the comprehensive assessment of patients' physical, psychological, and social well-being. This study synthesizes literature on the utilization of ePROMs in oncology, highlighting the diverse array of measurement instruments and questionnaires employed in cancer patient assessments. By comprehensively analyzing existing research, this study provides insights into the landscape of ePROMs, informs future research directions, and aims to optimize patient-centred oncology care through the strategic integration of ePROMs into clinical practice. A systematic review was conducted by searching peer-reviewed articles published in academic journals without time limitations up to 2024. The search was performed across multiple electronic databases, including PubMed, Scopus, and Web of Science, using predefined search terms related to cancer, measurement instruments, and patient assessment. The selected articles underwent a rigorous quality assessment using the Mixed Methods Appraisal Tool (MMAT). The review of 85 studies revealed a diverse range of measurement instruments and questionnaires utilized in cancer patient assessments. Prominent instruments such as the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and the Patient Reported Outcome-Common Terminology Criteria for Adverse Events (PRO-CTCAE) were frequently referenced across multiple studies. Additionally, other instruments identified included generic health-related quality of life measures and disease-specific assessments tailored to particular cancer types. The findings indicated the importance of utilizing a variety of measurement tools to comprehensively assess the multifaceted needs and experiences of cancer patients. Our systematic review provides a comprehensive examination of the varied tools and ePROMs employed in cancer care, accentuating the perpetual requirement for development and validation. Prominent instruments like the EORTC QLQ-C30 and PRO-CTCAE are underscored, emphasizing the necessity for a thorough assessment to meet the multifaceted needs of patients. Looking ahead, scholarly endeavours should prioritize the enhancement of existing tools and the creation of novel measures to adeptly address the evolving demands of cancer patients across heterogeneous settings and populations.

Social relationships and their impact on health-related quality of life in a long-term breast cancer survivor cohort.

Health-related quality of life (HRQOL) has become increasingly important for breast cancer survivors, but clinically relevant declines often persist for many years after treatment. This study aimed to investigate whether social relationships can mitigate or prevent this decline in HRQOL. Data were used from the German population-based Mamma Carcinoma Risk Factor Investigation (MARIE) cohort of 2022 breast cancer cases with follow-up information for more than 15 years after diagnosis. Correlations between social integration, social support, and global health status (GHS) as an overall measure of HRQOL were analyzed, and linear regression analysis was performed with structural equation modeling. The majority of participants reported high levels of social integration and social support and moderate levels of GHS. Social integration 5 years after diagnosis was associated with GHS 5 years after diagnosis (β=1.12; 95% CI,0.25-1.99), but no longitudinal effects were found. Social support 5 years after diagnosis was associated with better GHS 5 years (β=0.42; 95% CI,0.36-0.48) and 10 years after diagnosis (β=0.12; 95% CI,0.02-0.22), whereas social support 10 years after diagnosis was associated with GHS 10 years (β=0.29; 95% CI,0.20-0.39) and 15 years after diagnosis (β=0.10; 95% CI,0.01-0.21). These results confirm that social relationships positively influence HRQOL in long-term breast cancer survivors and that their association should receive more attention clinically and beyond routine care.

Association of Novel Ventricular Assist Device Self-report Measures With Overall Health-Related Quality of Life.

Few study authors examined factors influencing health-related quality of life (HRQOL) early after left ventricular assist device (LVAD) implantation. The purpose of this study was to determine whether 5 novel self-report measures and other variables were significantly associated with overall HRQOL at 3 months after LVAD surgery. Patients were recruited between October 26, 2016, and February 29, 2020, from 12 US sites. Data were collected before LVAD implantation and at 3 months post LVAD implantation. Overall HRQOL measures included the Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) overall summary score (OSS) and EuroQol 5-dimension- 3L visual analog scale. Potential factors associated with overall HRQOL included 5 novel self-report measures (Satisfaction with Treatment, Being Bothered by VAD Self-care and Limitations, VAD Team Communication, Self-efficacy regarding VAD Self-care, and Stigma), and demographic and clinical characteristics. Statistics included regression analyses. Of enrollees, 242 completed self-report measures at baseline, and 142 completed measures 3 months postoperatively. Patients were 55 ± 13 years old, with 21% female, 24% non-White, 39% high school or lower educated, and 47% destination therapy. Using the KCCQ-12 OSS, higher Satisfaction with Treatment was associated with a higher KCCQ-12 OSS; Being Bothered by VAD Self-care and Limitations, high school or lower education, chest incision pain, cardiac dysrhythmias within 3 postoperative months, and peripheral edema were associated with a worse KCCQ-12 OSS (R2 = 0.524). Factors associated with a worse 3-month EuroQol 5-dimension-3L visual analog scale were female sex, adverse events within 3 months post implantation (cardiac dysrhythmias, bleeding, and venous thrombosis), and chest incision pain (R2 = 0.229). No factors were associated with a higher EuroQol 5-dimension-3L visual analog scale score at 3 months. Two novel measures, demographics, postimplantation adverse events, and symptoms were associated with post-LVAD KCCQ-12 OSS early after surgery.

A systematic review of health-related quality of life outcomes in patients with advanced breast cancer treated with palbociclib.

Aim: To evaluate the impact of palbociclib treatment on health-related quality of life (HRQoL) in patients with hormone receptor-positive, human epidermal growth factor 2-negative advanced breast cancer (HR+/HER2- aBC) or metastatic breast cancer (mBC) in both the clinical and real-world setting. Materials & methods: A systematic literature review was conducted to identify clinical trials and real-world evidence studies up to June 2023 that reported HRQoL outcomes in patients with HR+/HER2- aBC or mBC treated with Palbociclib. Results: 15 unique studies reported across 35 records were identified. Of these, seven were randomized controlled trials (RCTs), three were single-arm clinical trials and five were real-world evidence (RWE) studies. HRQoL was generally found to be maintained in patients with HR+/HER2- aBC or mBC across RCTs, single-arm clinical trials and RWE studies. HRQoL measures across instruments, study types and line of therapy, were largely reported to be at least maintained if not improved from baseline among patients treated with palbociclib and were observed to be comparable or better in the palbociclib group versus monotherapy control arm in RCTs. Similar results were seen for treatment-related outcomes (e.g., sexual functioning, upset by hair loss, systemic therapy side effects etc.), and important individual patient outcomes, including pain, fatigue and physical functioning. Findings were also consistent across key clinical characteristics (visceral metastases, neutropenia), as well as patient populations often underrepresented in clinical trials (Asian patients, older adults). Conclusion: Overall, current evidence suggests that HRQoL is largely preserved with the addition of palbociclib to endocrine therapy in patients with HR+/HER2- aBC or mBC across study types and populations.

Assessments scales for the evaluation of health-related quality of life in Parkinson's disease, progressive supranuclear palsy, and multiple system atrophy: a systematic review.

The concept of wellbeing is expansive and intricate, making it challenging to define precisely. Similarly, the instruments employed to assess wellbeing are complex and multifaceted. Therefore, it is more appropriate to refer to the notion of wellbeing as Health-Related Quality of Life (HRQoL), which is the central focus of many measures used to assess the feeling of wellbeing. This review aimed to identify the tools most commonly used to evaluate HRQoL in individuals with Parkinsonism-a group of movement disorders that negatively impact the quality of life due to the intricate interplay of symptoms, socio-demographic characteristics, and psychological factors. The main aim was to assess the psychometric properties of these measures in terms of validity and reliability. A literature review was conducted, focusing on research related to the assessment of HRQoL in connection to symptoms of Parkinsonism. This review included all studies that examined HRQoL using evaluation scales, exams, or self-reported questionnaires. The literature review was conducted using the databases Scopus and Web of Science and the search engine PubMed to identify studies published between 1996 and 2023. Only records that assessed HRQoL in individuals with Parkinson's disease and Parkinsonism were selected for evaluation. A total of 393 records were examined, and eight tools were identified as the most frequently used in the evaluation of HRQoL. The results show a significant gap in knowledge regarding the latent structure and measurement invariance of HRQoL measurements, which may have a significant influence on the interpretation of test outcomes. Moreover, there is a lack of clear divergent validity between HRQoL assessments and other tests used as predictors of HRQoL. This could represent a significant limitation, affecting the construct and criterion validity of HRQoL measures.

Ibrutinib plus rituximab and mini-CHOP in older patients with newly diagnosed DLBCL: a phase 2 ALLG study

AbstractThe multicenter, prospective phase 2 Australasian Leukaemia & Lymphoma Group NHL29 trial was conducted to assess the addition of ibrutinib to R-mini-CHOP (dose attenuated R-CHOP; rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone) in patients aged ≥75 years with newly diagnosed diffuse large B-cell lymphoma (DLBCL). Treatment consisted of six 21-day cycles of ibrutinib–R-mini-CHOP followed by two 21-day cycles of R-ibrutinib. Coprimary end points were deliverability and 2-year overall survival (OS). The median average relative total dose and average relative dose intensity for the entire regimen were both 97% (interquartile range, 82-100 and 88-100, respectively). With a median follow-up of 35.5 months, the 2-year OS was 68% (95% confidence interval [CI], 55.6-77.4) with a 2-year progression-free survival (PFS) of 60.0% (95% CI, 47.7-70.3). Median OS and PFS were 72 months (95% CI, 35 to not reached) and 40 months (95% CI, 20.4 to not reached), respectively. The overall response rate was 76% (61/79) of patients, with a complete response rate of 71% (56/79). Deaths occurred in 34 of 79 patients (43%), including 17 from progressive disease and 5 treatment related. Overall, 67% patients experienced at least 1 serious adverse event. Most common adverse events were infections and diarrhea (the majority grade 1-2). In both health-related quality of life measures, there was an improvement in functional and symptom scales, median health state classification score, and median visual analogue scale in responders over time. In conclusion, this study showed that the addition of ibrutinib to R-mini-CHOP was both deliverable and efficacious in elderly DLBCL patients.