Health-related Quality Of Life In Survivors Research Articles

Comparing the measurement properties of the EQ-5D-5L, SF-6Dv2, QLU-C10D and FACT-8D among survivors of classical Hodgkin's lymphoma.

This study aimed to evaluate the measurement properties of EQ-5D-5L, SF-6Dv2, QLU-C10D, and FACT-8D in survivors of Classical Hodgkin's Lymphoma (CHL). A cross-sectional, web-based survey was conducted from May to August 2022 to collect data. Chinese value sets were used to estimate the utility scores for EQ-5D-5L, SF-6Dv2, and QLU-C10D, while the Australian value set was used for FACT-8D. The measurement properties assessed included ceiling and floor effects, convergent validity (assessing associations between similar dimensions/utility scores using Spearman's rank correlation and intraclass correlation coefficient), and known-group validity (measures could differentiate health-related quality of life (HRQoL) between risk groups). A total of 534 CHL survivors participated in the survey and completed the questionnaire. All dimensions of EQ-5D-5L, SF-6D (except for vitality), QLU-C10D, and FACT-8D showed ceiling effects, ranging from 18 to 91.6%. The EQ-5D-5L demonstrated the higher ceiling effects compared to other measures, with 33% of patients reporting full health on this scale. All 30 pairs of associations between similar dimensions from the four measures were statistically significant, with correlation coefficients ranging from 0.29 to 0.77. Regarding utility scores, the EQ-5D-5L utility score showed a stronger correlation with SF-6Dv2 than with the other two measures. Statistically significant correlations of utility scores between the four measures were observed. EQ-5D-5L can significantly differentiate HRQoL among all known-groups, while SF-6Dv2, QLU-C10D, and FACT-8D showed a less strong discriminant ability. EQ-5D-5L outperformed SF-6Dv2 in terms of agreement with cancer-specific PRMs and discriminant ability. However, SF-6Dv2 showed stronger associations with similar dimensions of QLU-C10D and FACT-8D, indicating high convergent validity. The generic PBMs are sensitive enough to measure HRQoL in survivors of CHL.

Neighborhood vulnerability and associations with poor health-related quality of life among adult survivors of childhood cancer.

Few studies have investigated the relationship between neighborhood vulnerability and health-related quality of life (HRQOL) in the childhood cancer population. This study evaluated the impact of neighborhood vulnerability on HRQOL among adult survivors of childhood cancer. This cross-sectional study included 4393 adult survivors of childhood cancer from the St Jude Lifetime Cohort Study. At the baseline (2007-2020), HRQOL was assessed using the SF36v2's physical and mental components summaries (PCS and MCS). Neighborhood vulnerability was assessed using the overall, domain, and indicator-specific scores of the Social Vulnerability Index (SVI) and Minority Health SVI (MHSVI). Multivariable logistic regression was used to evaluate associations of neighborhood vulnerability (quartiles: Q1-Q4) with impaired HRQOL (1SD below the norm), adjusting for diagnosis, demographics, personal socioeconomic status (SES), lifestyle, and chronic health condition burden. Interactions of SVI and MHSVI with personal SES on impaired HRQOL were analyzed. Among survivors, 51.9% were male, averaging 30.3 years of age at evaluation and 21.5 years since diagnosis. Comparing neighborhoods with higher vs lower vulnerability (Q4 vs Q1), overall (odds ratio [OR] = 1.60, 95% confidence interval [CI] = 1.19 to 2.16) and domain-specific vulnerability (socioeconomic: OR = 1.59, 95% CI = 1.18 to 2.15; household composition: OR = 1.54, 95% CI = 1.16 to 2.06; housing and transportation: OR = 1.33, 95% CI = 1.00 to 1.76; medical vulnerability: OR = 1.60, 95% CI = 1.22 to 2.09) were significantly associated with impaired PCS, but not MCS. Residing in neighborhoods lacking urgent care clinics was significantly associated with impaired PCS (OR = 1.39, 95% CI = 1.08 to 1.78). Having lower vs higher personal education and living in higher vulnerability neighborhoods were associated with more impaired PCS (Pinteraction = .021). Specific aspects of neighborhood vulnerability increase the risk for impaired physical HRQOL. Addressing these neighborhood factors is essential to enhance the HRQOL of survivors.

The impact of negative COVID-19 experiences on cancer survivors' health-related quality of life and psychological distress: a moderated mediation model.

Cancer survivors experienced poorer health-related quality of life (HRQoL) and greater psychological distress during the COVID-19 pandemic than those without cancer. However, the underlying mechanisms that may explain how negative experiences during the pandemic are associated with distress and HRQoL remain unknown. We examined whether psychosocial risk factors (i.e., healthcare disruption, disruption to daily activities and social interaction [DDASI], and financial hardship) mediated the relationship between negative COVID-19-related experiences and cancer survivors' HRQoL and psychological distress (i.e., depressive symptoms, and anxiety) and whether the mediating effects were moderated by psychosocial protective factors (i.e., stress management ability and social support). A total of 9,651 cancer survivors completed a questionnaire assessing negative COVID-19-related experiences, psychosocial and practical experiences, and HRQoL. Conditional process analysis was used to evaluate the proposed moderated mediation models. Participants had a mean age of 63.8 years (SD = 12.3) and were mostly non-Hispanic White (82.3%). DDASI and financial hardship mediated the relationship between negative COVID-19-related experiences and cancer survivor's HRQoL and psychological distress. Stress management ability buffered the indirect effect of DDASI on cancer survivors' HRQoL and psychological distress. Social support buffered the indirect effect of financial hardship on HRQoL and depressive symptoms. Financial resources and social interactions may buffer negative effects of major disruptions such as the COVID-19 pandemic. Future studies should assess the longitudinal impact of these associations.

Longitudinal associations of diurnal rest-activity rhythms with fatigue, insomnia, and health-related quality of life in survivors of colorectal cancer up to 5 years post-treatment

BackgroundThere is a growing population of survivors of colorectal cancer (CRC). Fatigue and insomnia are common symptoms after CRC, negatively influencing health-related quality of life (HRQoL). Besides increasing physical activity and decreasing sedentary behavior, the timing and patterns of physical activity and rest over the 24-h day (i.e. diurnal rest-activity rhythms) could also play a role in alleviating these symptoms and improving HRQoL. We investigated longitudinal associations of the diurnal rest-activity rhythm (RAR) with fatigue, insomnia, and HRQoL in survivors of CRC.MethodsIn a prospective cohort study among survivors of stage I-III CRC, 5 repeated measurements were performed from 6 weeks up to 5 years post-treatment. Parameters of RAR, including mesor, amplitude, acrophase, circadian quotient, dichotomy index, and 24-h autocorrelation coefficient, were assessed by a custom MATLAB program using data from tri-axial accelerometers worn on the upper thigh for 7 consecutive days. Fatigue, insomnia, and HRQoL were measured by validated questionnaires. Confounder-adjusted linear mixed models were applied to analyze longitudinal associations of RAR with fatigue, insomnia, and HRQoL from 6 weeks until 5 years post-treatment. Additionally, intra-individual and inter-individual associations over time were separated.ResultsData were available from 289 survivors of CRC. All RAR parameters except for 24-h autocorrelation increased from 6 weeks to 6 months post-treatment, after which they remained relatively stable. A higher mesor, amplitude, circadian quotient, dichotomy index, and 24-h autocorrelation were statistically significantly associated with less fatigue and better HRQoL over time. A higher amplitude and circadian quotient were associated with lower insomnia. Most of these associations appeared driven by both within-person changes over time and between-person differences in RAR parameters. No significant associations were observed for acrophase.ConclusionsIn the first five years after CRC treatment, adhering to a generally more active (mesor) and consistent (24-h autocorrelation) RAR, with a pronounced peak activity (amplitude) and a marked difference between daytime and nighttime activity (dichotomy index) was found to be associated with lower fatigue, lower insomnia, and a better HRQoL. Future intervention studies are needed to investigate if restoring RAR among survivors of CRC could help to alleviate symptoms of fatigue and insomnia while enhancing their HRQoL.Trial registrationEnCoRe study NL6904 (https://www.onderzoekmetmensen.nl/).

Impact of sociodemographic factors, stress, and communication on health-related quality of life in survivors of pediatric cancer.

While most research has largely focused on medical risks associated with reduced health-related quality of life (HRQOL) in survivors, sociodemographic and family factors may also play a role. Thus, we longitudinally examined sociodemographic factors and family factors associated with survivor HRQOL, including adolescent's cancer-specific stress, mother's general stress, and mother-adolescent communication. Mothers (N=80) and survivors (ages 10-23, N=50) were assessed 5years following initial diagnosis. Mothers completed measures regarding sociodemographic background adolescent's cancer-specific stress, mother's general stress, mother-adolescent communication, and adolescent HRQOL. Survivors also reported on their own HRQOL. Two hierarchical multiple regressions examined predictors of (a) mother's report of adolescent HRQOL, and (b) survivor's self-report of HRQOL. The final model predicting mother-reported adolescent HRQOL was significant, F(5,74)=21.18, p<.001, and explained 59% of the variance in HRQoL. Significant predictors included adolescent stress (β=-.37, p<.001), mothers' stress (β=-.42, p<.001), and communication (β=.19, p=.03). The final model predicting survivor-reported HRQOL was also significant, F(5,44)=5.16, p<.01 and explained 24% of the variance in HRQOL. Significant predictors included adolescent stress (β=-.37, p=.01) and communication (β=-.31, p=.04). Sociodemographic factors were not a significant predictor of HRQOL in any model. Family stress and communication offer potential points of intervention to improve HRQOL of pediatric cancer survivors from mother and survivor perspectives. While additional research is needed, healthcare professionals should encourage stress management and strong mother-child communication to enhance survivors' long-term HRQOL. Such interventions may be complimentary to efforts targeting the known sociodemographic factors that often affect health.

Health-related quality of life in young Norwegian survivors of out-of-hospital cardiac arrest related to pre-arrest exercise habits

AimTo compare health-related quality of life (HRQoL) in young survivors of out-of-hospital cardiac arrest (OHCA) in Norway with an age and sex-matched reference population and to assess the associations between exercise volume prior to OHCA and HRQoL after. MethodsWe present data from survivors aged 18–50 years registered with OHCA in the Norwegian Cardiac Arrest Registry between January 1st 2015 and December 31st 2017. Survivors were invited to answer two questionnaires; (1) the Short Form 36 (SF-36) Health Survey Version 1, and (2) about exercise habits prior to OHCA. Respondents were randomly matched 1:1 for age and sex with a reference population (data were available from the Norwegian Centre for Research Data). ResultsOf the 175 survivors invited, 95 (54%) responded, median age was 44 (range 35–48) years, 26 (27%) females. Valid results for SF-36 were available for 91 survivors, of whom 87 reported pre-OHCA exercise-volume. Prior to OHCA, 21 did no regular exercise, 44 exercised 1–4 hours/week and 22 exercised ≥5 hours/week. Compared to the reference population survivors had significantly (p < 0.01) poorer SF-36 scores for scales relating to physical- and mental health. SF-36 scale scores were similar in survivors who did and did not exercise regularly. Within the regular exercisers, survivors reporting ≥5 hours of exercise/week had better SF-36 scores than those exercising less. ConclusionPoorer HRQoL in survivors compared to the reference population should prompt us to explore how treatment and rehabilitation could be improved and adapted. More exercise before OHCA favoured better HRQoL after, which aligns well with the recognised positive association between HRQoL and physical activity in general.

Health-related quality of life trajectories in critical illness: Protocol for a Monte Carlo simulation study.

Health-related quality of life (HRQoL) is a patient-centred outcome increasingly used as a secondary outcome in critical care research. It may cover several important dimensions of clinical status in intensive care unit (ICU) patients that arguably elude other more easily quantified outcomes such as mortality. Poor associations with harder outcomes, conflicting data on HRQoL in critically ill compared to the background population, and paradoxical effects on HRQoL and mortality complicate the current operationalisation in critical care trials. This protocol outlines a simulation study that will gauge if the areas under the HRQoL trajectories could be a viable alternative. We will gauge the behaviour of the proposed HRQoL operationalisation through Monte Carlo simulations, under clinical scenarios that reflect a broad critical care population eligible for inclusion in a large pragmatic trial. We will simulate 15,360 clinical scenarios based on a full factorial design with the following seven simulation parameters: number of patients per arm, relative mortality reduction in the interventional arm, acceleration of HRQoL improvement in the interventional arm, the relative improvement in final HRQoL in the interventional arm, dampening effect of mortality on HRQoL values at discharge from the ICU, proportion of so-called mortality benefiters in the interventional arm and mortality trajectory shape. For each clinical scenario, we will simulate 100,000 two-arm trials with 1:1 randomisation. HRQoL will be sampled fortnightly after ICU discharge. Outcomes will include HRQoL in survivors and all patients at the end of follow-up; mean areas under the HRQoL trajectories in both arms; and mean difference between areas under the HRQoL trajectories and single-sampled HRQoLs at the end of follow-up. In the outlined simulation study, we aim to assess whether the area under the HRQoL trajectory curve could be a candidate for reconciling the seemingly paradoxical effects on improved mortality and reduced HRQoL while remaining sensitive to early or accelerated improvement in patient outcomes. The resultant insights will inform subsequent methodological work on prudent collection and statistical analysis of such data from real critically ill patients.

Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors.

Craniopharyngioma (CP) is a rare brain tumor associated with severe comorbidities that reduce survivor health-related quality of life (HRQOL). However, CP impact on caregivers is unknown. To measure caregiver burden and examine its relationship to survivor HRQOL and other determinants in CP. Eighty-two participants who self-identified as caregivers of CP survivors responded to an online survey including caregiver-reported Pediatric Quality of Life Inventory (PedsQL), and the Zarit Burden Interview (ZBI). Caregivers reported an average of 13 out of 29 health conditions in survivors following tumor treatment, including excess weight, hypopituitarism, fatigue, mood, cognition, social issues, temperature dysregulation, visual impairment, and sleep problems. Strikingly, 70% of survivors who experienced obesity also experienced hyperphagia. ZBI scores were moderate with a median of 37. PedsQL total scores were poor with a median of 46.2. ZBI scores were independent of caregiver level of education and care duration. Both scores were independent of income, survivor age, gender, age at diagnosis, or tumor recurrence. In contrast, both scores depended on the number (P < .001) and the type of survivor health problems, with significantly worse scores for caregivers or survivors with symptoms of hypothalamic dysfunction (P < .001) including hyperphagia but not obesity. PedsQL total scores significantly predicted ZBI scores (P < .001). Survivor poly-symptomatology predicted and incurred significant caregiver burden. Our study separated hyperphagia and obesity and identified hyperphagia and other hypothalamic dysfunction symptoms as understudied issues. Altogether, these findings draw particular attention to the unmet needs of CP survivors and their caregivers.

Cardiorespiratory fitness and health-related quality of life in survivors of childhood central nervous system tumours

PurposeWe assessed cardiorespiratory fitness and health-related quality of life (HRQoL) in survivors of childhood central nervous system (CNS) tumours.MethodsParticipants were recruited from the National Children’s Cancer Service in Children’s Health Ireland at Crumlin. Inclusion criteria included diagnosis of a primary CNS tumour, aged between 6 and 17 years, between 3 months and 5 years post completion of oncology treatment, independently mobile, and deemed clinically appropriate to participate by treating oncologist. Cardiorespiratory fitness was assessed using the six-minute walk test. HRQoL was assessed with the PedsQL Generic Core Scales, Version 4.0.ResultsThirty-four participants (n = 16 male) were recruited, with a mean age of 12.21 ± 3.31 years and a mean time since completion of oncology treatment of 2.19 ± 1.29 years. Mean six-minute walk distance (6MWD) achieved was 489.56 ± 61.48 m, equating to the 8th percentile overall. 6MWD was significantly reduced when compared to predicted population norms (p < 0.001). PedsQL parent proxy-report and child-report scores were significantly lower when compared to healthy paediatric norms (p < 0.001 – p = 0.011). A significant positive correlation was found between 6MWD and both parent proxy-report (r = 0.55, p < 0.001) and child-report (r = 0.48, p = 0.005) PedsQL total scores.ConclusionSurvivors of childhood CNS tumours present with impaired cardiorespiratory fitness and HRQoL. Higher levels of cardiorespiratory fitness are associated with higher levels of HRQoL.Implications for Cancer SurvivorsRoutine screening of cardiorespiratory fitness and HRQoL in survivors of childhood CNS tumours may be beneficial. Healthcare providers should encourage and provide education on the potential benefits of physical activity to improve overall quality of life.

Longitudinal changes of health-related quality of life over 10years in breast cancer patients treated with radiotherapy following breast-conserving surgery.

The study intended to (1) assess changes of health-related quality of life (HRQoL) between early treatment-related time points and 10years post-treatment in a cohort of breast cancer (BC) patients who received radiotherapy (RT), (2) to evaluate differences in HRQoL between long-term BC survivors and unaffected women from the same geographical region and (3) to identify determinants of long-term HRQoL in the survivor cohort. 292 BC patients were recruited prior to RT after breast-conserving surgery between 1998 and 2001 in Germany and prospectively followed up for a median of 11.4years (range 10.3-12.8years). HRQoL was assessed using EORTC QLQ-C30 at pre-RT (baseline), during RT, 6weeks after RT, and at the 10-year follow-up. Changes in mean HRQoL scores over time were assessed using linear-mixed models. HRQoL in long-term survivors and controls was compared using Wilcoxon rank-sum test, stratified by age groups. Multivariable linear regression models were used to identify determinants for HRQoL in long-term BC survivors. Compared to baseline level (mean summary score of 64.9), global health status/quality of life (GHS/QoL) declined during RT (62.4) and improved 6weeks after RT (69.9) before decreasing to baseline level at the 10-year follow-up (66.7). Most functional domains deteriorated or remained stable at 10years post-diagnosis compared to post-RT scores, except for role functioning which improved, while dyspnea and diarrhea significantly deteriorated between those two time points. There were no significant differences in long-term GHS/QoL between BC survivors 10years post-RT and controls for all age groups (p > 0.05). However, deficits in specific HRQoL domains such as emotional burden, sleep problems or fatigue were found to more strongly affect survivors, in particular those younger than 65years, compared to controls. In the determinant analysis, being overweight was associated with lower GHS/QoL and physical functioning, while living with others was found to be associated with better physical functioning, and decreased dyspnea and pain levels. Certain comorbidities such as depression had a strong association with multiple HRQoL domains, including lower GHS/QoL and functioning as well as a higher level of fatigue, pain, sleep/intestinal problems, and financial difficulties. Side effects such as lymphedema/pain and fibrosis were associated with worse physical and social functioning, respectively. The long-term GHS/QoL remained comparable when compared with the control population while restrictions in certain functional and symptoms domains in long-term BC survivors persisted over 10years, in particular among younger survivors. Targeted screening to identify cancer survivors at risk for psychosocial/other impairment accounting also for comorbidities and treatment side effects may be warranted in long-term aftercare to address unmet health needs.

Determinants of health-related quality-of-life in adult survivors of childhood cancer: integrating personal and societal values through a health utility approach

Childhood cancer survivors are at elevated risk for poor health-related quality-of-life (HRQOL). Identification of potentially modifiable risk factors associated with HRQOL is needed to inform survivorship care. Participants included 4294 adult childhood cancer survivors from the St. Jude Lifetime Cohort Study who completed a survey and clinical assessment at entry into the survivorship cohort (baseline) and follow-up (median interval: 4.3 years) between 2007 and 2019. The SF-6D compared utility-based HRQOL of survivors to an independent sample from the U.S. Medical Expenditures Panel Survey. Chronic health conditions (CHCs) were graded using modified Common Terminology Criteria for Adverse Events. General linear models examined cross-sectional and temporal associations of HRQOL with CHC burden (total and by organ-system), adjusting for potential risk factors. Survivors reported poorer HRQOL compared to the general population (effect size [d]=-0.343). In cross-sectional analyses at baseline, significant non-demographic risk factors included higher total CHC burden (driven by more severe cardiovascular [d=-0.119, p=0.002], endocrine [d=-0.112, p=0.001], gastrointestinal [d=-0.226, p<0.001], immunologic [d=-0.168, p=0.035], neurologic [d=-0.388, p<0.001], pulmonary [d=-0.132, p=0.003] CHCs), public (d=-0.503, p<0.001) or no health insurance (d=-0.123, p=0.007), current smoking (d=-0.270, p<0.001), being physically inactive (d=-0.129, p<0.001), ever using illicit drugs (d=-0.235, p<0.001), and worse diet quality (d=-0.004, p=0.016). In temporal analyses, poorer utility-based HRQOL at follow-up was associated with risk factors at baseline, including higher total CHC burden (driven by cardiovascular [d=-0.152, p=0.002], endocrine [d=-0.092, p=0.047], musculoskeletal [d=-0.160, p=0.016], neurologic [d=-0.318, p<0.001] CHCs), public (d=-0.415, p<0.001) or no health insurance (d=-0.161, p=0.007), current smoking (d=-0.218, p=0.001), and ever using illicit drugs (d=-0.217, p<0.001). Adult survivors report worse utility-based HRQOL than the general population, and potentially modifiable risk factors were associated with HRQOL. Interventions to prevent the early onset of CHCs, promote healthy lifestyle, and ensure access to health insurance in the early survivorship stage may provide opportunities to improve HRQOL. The research reported in this manuscript was supported by the U.S. National Cancer Institute under award numbers U01CA195547 (Hudson/Ness), R01CA238368 (Huang/Baker), R01CA258193 (Huang/Yasui), R01CA270157 (Bhakta/Yasui), and T32CA225590 (Krull). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.

Association between days alive without life support/out of hospital and health-related quality of life.

Trials in critically ill patients increasingly focus on days alive without life support (DAWOLS) or days alive out of hospital (DAOOH) and health-related quality of life (HRQoL). DAWOLS and DAOOH convey more information than mortality and are simpler and faster to collect than HRQoL. However, whether these outcomes are associated with HRQoL is uncertain. We thus aimed to assess the associations between DAWOLS and DAOOH and long-term HRQoL. Secondary analysis of the COVID STEROID 2 trial including adults with COVID-19 and severe hypoxaemia and the Handling Oxygenation Targets in the Intensive Care Unit (HOT-ICU) trial including adult intensive care unit patients with acute hypoxaemic respiratory failure. Associations between DAWOLS and DAOOH at day 28 and 90 and long-term HRQoL (after 6 or 12 months) using the EuroQol 5-dimension 5-level survey (EQ VAS and EQ-5D-5L index values) were assessed using flexible models and evaluated using measures of fit and prediction adequacy in both datasets (comprising internal performance and external validation), non-parametric correlation coefficients and graphical presentations. We found no strong associations between DAWOLS or DAOOH and HRQoL in survivors at HRQoL-follow-up (615 and 1476 patients, respectively). There was substantial variability in outcomes, and predictions from the best fitted models were poor both internally and externally in the other trial dataset, which also showed inadequate calibration. Moderate associations were found when including non-survivors, although predictions remained uncertain and calibration inadequate. DAWOLS and DAOOH were poorly associated with HRQoL in adult survivors of severe or critical illness included in the COVID STEROID 2 and HOT-ICU trials.

Quantifying the burden of the post-ICU syndrome in South Africa: A scoping review of evidence from the public health sector.

Background The post-ICU syndrome (PICS) comprises unexpected impairments in physical, cognitive, and mental health after intensive care unit (ICU) discharge, and is associated with a diminished health-related quality of life (HRQOL). A Cochrane review recommended more research in this field from low- and middle-income countries. Objectives This review aims to examine the extent and nature of publications in the field of PICS in the South African (SA) public health sector. Findings of available local research are contextualised through comparison with international data. Methods A comprehensive literature search strategy was employed. Inclusion criteria comprised publications enrolling adult patients following admission to SA public hospital ICUs, with the aim to study the main elements of PICS (ICU-acquired neuromuscular weakness, neurocognitive impairment, psychopathology and HRQOL). Results Three studies investigated physical impairment, 1 study psychopathology, and 2 studies HRQOL. Recommended assessment tools were utilised. High rates of attrition were reported. Neuromuscular weakness in shorter-stay patients had recovered at 3 months. Patients who were ventilated for ≥5 days were more likely to be impaired at 6 months. The study on psychopathology reported high morbidity. The HRQOL of survivors was diminished, particularly in patients ventilated for ≥5 days. Conclusion This review found a paucity of literature evaluating PICS in the SA public health sector. The findings mirror those from international studies. Knowledge gaps pertaining to PICS in medical, surgical and HIV-positive patients in SA are evident. No publications on neurocognitive impairment or the co-occurrence of PICS elements were identified. There is considerable scope for further research in this field in SA. Contributions of the study This review identified the available publications investigating the post ICU syndrome (PICS) in the South African public healthcare setting. A small number of ground-breaking studies were found. Knowledge gaps in this field were identified.

Enfoques predominantes en los estudios sobre calidad de vida relacionada a la salud de jóvenes sobrevivientes de cáncer en la infancia o adolescencia. Revisión integradora de la literatura científica

Abstract Survivors of childhood cancer constitute a growing population. The disease experienced, its treatment or the occurrence of late complications may affect survivors’ health-related quality of life (HRQOL). Understanding HRQOL is a challenge due to its conceptual complexity and the mode in which it is studied. Objective: To identify the predominant lines of research in the study of HRQOL in this population. Methods: An integrative literature review was carried out, involving a systematic search of primary articles indexed in the Scopus and PubMed databases. Results: In the 48 publications selected, four main lines of research were identified: HRQOL in survivors in general; HRQOL in long-term survivors; the study of determinants of HRQOL; and the study of methodological aspects of HRQOL measurement. A quantitative approach using generic measurement instruments predominates, and the conceptual model of HRQOL based on function emphasizes the importance of physical, psychological, and social functionality and the impact of the disease and treatment on these aspects. Conclusions: incorporating a qualitative, meaning-based approach to the understanding of lived experiences from a subjective and holistic perspective is indispensable.

Cancer-related fatigue mediates the relationships between physical fitness and attendance and quality of life after participation in a clinical exercise program for survivors of cancer.

Cancer-related fatigue (CRF) is a common and limiting symptom reported by survivors of cancer, negatively impacting health-related quality of life (HRQoL). Exercise improves CRF, HRQoL, and physical fitness in survivors. Prospective research trials have shown that exercise-associated fitness improvements effects on HRQoL are mediated by CRF; however, this has not been investigated in a pragmatic real-world setting. This study utilizes data from a large heterogenous population of survivors participating in a clinical exercise program to investigate this mediation effect, as well as effects of program attendance. Data were collected from 194 survivors completing the BfitBwell Cancer Exercise Program (July 2016-February 2020). Changes in HRQoL, CRF, and fitness were calculated and program attendance collected. Basic correlation analyses were performed. Linear regression analyses were performed to assess mediation by CRF. All measures of CRF, HRQoL, and physical fitness significantly improved following the exercise program. Improvements in physical fitness were significantly correlated with improvements in HRQoL (r = 0.15-0.18), as was program attendance (r = 0.26) and CRF (r = 0.59). The effects of physical fitness and program attendance on HRQoL were at least partially mediated by the effects of CRF. This study extends research findings on how exercise programs improve HRQoL in survivors of cancer to a real-world setting. Results indicate that clinical exercise programs should target reductions in CRF in survivors (during or after treatment) through improvements in physical fitness to improve HRQoL and that high attendance should be encouraged regardless of fitness changes.

"I Feel Happy Again": Methylphenidate Supports Health-Related Quality of Life in Survivors of Pediatric Brain Tumor.

Background: The deleterious impact upon the cognitive development of survivors of pediatric brain tumors (PBT) is well documented. Impairment in cognitive function is associated with reduced health-related quality of life (HRQoL), such that survivors of PBT report difficulties in multiple distinct domains and an overall reduced quality of life. Studies of the use of methylphenidate in survivors of PBT to alleviate impairment in cognitive functions have shown some success. The current study aimed to explore the impact upon HRQoL in survivors of PBT of a trial of psychostimulant medication. Method: Data were collected from 12 pediatric neuro-oncology patients aged 7–17 years receiving methylphenidate treatment. HRQoL was measured using the PEDS QL quality of life self-report measure and a semi-structured questionnaire-based interview. Results: Analyses of data demonstrates benefit to five domains associated with HRQoL: social, emotional, academic, physical, and cognition. Conclusion: Survivors of PBT reported favorable views as to the subjective benefit of methylphenidate on post-treatment impairment of HRQoL. This medication may offer the potential for restoration of a sense of ‘normality’ of function following cancer treatment in this clinical population.

Health-related quality-of-life and health-utility reporting in critical care.

Mortality is a well-established patient-important outcome in critical care studies. In contrast, morbidity is less uniformly reported (given the myriad of critical care illnesses and complications of each) but may have a common end-impact on a patient’s functional capacity and health-related quality-of-life (HRQoL). Survival with a poor quality-of-life may not be acceptable depending on individual patient values and preferences. Hence, as mortality decreases within critical care, it becomes increasingly important to measure intensive care unit (ICU) survivor HRQoL. HRQoL measurements with a preference-based scoring algorithm can be converted into health utilities on a scale anchored at 0 (representing death) and 1 (representing full health). They can be combined with survival to calculate quality-adjusted life-years (QALY), which are one of the most widely used methods of combining morbidity and mortality into a composite outcome. Although QALYs have been use for health-technology assessment decision-making, an emerging and novel role would be to inform clinical decision-making for patients, families and healthcare providers about what expected HRQoL may be during and after ICU care. Critical care randomized control trials (RCTs) have not routinely measured or reported HRQoL (until more recently), likely due to incapacity of some patients to participate in patient-reported outcome measures. Further differences in HRQoL measurement tools can lead to non-comparable values. To this end, we propose the validation of a gold-standard HRQoL tool in critical care, specifically the EQ-5D-5L. Both combined health-utility and mortality (disaggregated) and QALYs (aggregated) can be reported, with disaggregation allowing for determination of which components are the main drivers of the QALY outcome. Increased use of HRQoL, health-utility, and QALYs in critical care RCTs has the potential to: (1) Increase the likelihood of finding important effects if they exist; (2) improve research efficiency; and (3) help inform optimal management of critically ill patients allowing for decision-making about their HRQoL, in additional to traditional health-technology assessments.

Pain, depressive symptoms, and health-related quality of life among survivors of pediatric hematopoietic stem cell transplant.

Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. Fifty-one survivors of pediatric HCT (Mage =14.3years, standard deviation [SD]=4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.]=.23, p<.001) and HRQoL (Est.=-.2, p=.04), and direct effects of depressive symptoms on HRQoL (Est.=-.68, p<.001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est.=-.16, p=.006). Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.

Health-Related Quality of Life following Surgery for Native and Prosthetic Valve Infective Endocarditis.

Objectives: The objective of this study was to compare the long-term outcomes and health-related quality of life (HRQOL) of patients following surgery for infective native valve endocarditis (NVE) and prosthetic valve endocarditis (PVE). Methods: We retrospectively identified 633 consecutive patients who had undergone surgery for infective endocarditis at our center between January 2005 and October 2018. The patients were interviewed, and the SF-36 survey was used to assess the HRQOL of survivors. Propensity score matching (2:1) was performed with data from a German reference population. Multivariable analysis incorporated binary logistic regression using a forward stepwise (conditional) model. Results: The median age of the cohort was 67 (55–74) years, and 75.6% were male. Operative mortality was 13.7% in the NVE group and 21.6% in the PVE group (p = 0.010). The overall survival at 1 year was 88.0% and was comparable between the groups. The physical health summary scores were 49 (40–55) for the NVE patients and 45 (37–52) for the PVE patients (p = 0.043). The median mental health summary scores were 52 (35–57) and 49 (41–56), respectively (p = 0.961). On comparison of the HRQOL to the reference population, the physical health summary scores were comparable. However, significant differences were observed with regard to the mental health summary scores (p = 0.005). Conclusions: Our study shows that there are significant differences in the various domains of HRQOL, not only between NVE and PVE patients, but also in comparison to healthy individuals. In addition to preoperative health status, it is important to consider the patient’s expectations regarding surgery. Further prospective studies are required.

Health-related quality of life in children and adolescents in remission after antineoplastic treatment: a systematic review

Purpose: The aim of this systematic review was to evaluate available evidence on the effect of childhood cancer and its treatment on survivors' health-related quality of life (HRQoL). Methods: MEDLINE, EMBASE, the Cochrane Oral Health Group's Trials Register, CENTRAL database and unpublished literature on ClinicalTrials.gov, the National Research Register, and Pro-Quest Dissertation Abstracts and Thesis databases were searched for studies, up to April 2021, reporting on HRQoL of children and adolescents in remission after antineoplastic treatment. No language or publication date restrictions were applied. Data extraction and risk of bias assessment, using the Newcastle-Ottawa scale were performed and overall quality of life was reported. Scores for specific domains were recorded along with disease- and treatment-related determinants of poor HRQoL. Results: In all, 20 cross-sectional studies including 3119 patients (aged 4-17 years) who were in remission were identified in the literature search. Quality of included studies ranged from good to excellent. Findings were contradictory, with some studies reporting a similar or even better HRQoL for survivors compared to healthy controls, and others reporting diminished values. Physical and psychosocial functioning were the domains mostly affected, followed by social functioning. Determinants of poor HRQoL were female gender, central nervous system tumors, combination of treatment modalities, and severity of late effects. Conclusion: Cancer survivors are affected by the disease and its treatment to some extent but they seem to perform well overall.