Health-related Quality Of Life In Survivors Research Articles

Quality of life in adolescents who underwent congenital diaphragmatic hernia surgical repair.

The advances made in the surgical and postnatal treatment of congenital diaphragmatic hernia (CDH) have considerably improved patient survival, but morbidity remains significant. The objective of this study was to analyze the effect these sequels have on the health-related quality of life (HRQL) of adolescents and young adults who have survived CDH, and to compare it with that of the general population. A transversal descriptive study of patients diagnosed with CDH in our institution from 1997 to 2004 was carried out. Survival, location, hernia size, herniated organs, need for extracorporeal membrane oxygenation, and mechanical ventilation time were analyzed. In addition, a comparative study of the current HRQL of survivors was conducted using the SF-36 survey (36-Item Health Survey Short Form), which assessed physical function, physical role, body pain, general health, vitality, social function, emotional role, and mental health. Data of 24 healthy adolescents was used as a control group. Of the 29 survivors (70.7%), 21 were successfully contacted, and 16 responded to the survey. They all claimed their overall quality of life was good or very good. The group of adolescents who underwent CDH surgical repair had better results in the vitality (p= 0.001) and mental health (p<0.05) areas, but the overall HRQL score and the remaining health areas were similar. No significant differences were found regarding diaphragmatic size or need for ECMO. According to adolescent survivors who underwent CDH surgical repair, their quality of life is similar to that of other individuals of their age. Our results are encouraging and may prove useful for future parents of CDH patients.

Symptom burden, psychological distress, and health-related quality of life in cancer survivors with pelvic late radiation tissue injuries

PurposeCurative radiotherapy for cancer may lead to severe late radiation tissue injuries (LRTIs). However, limited knowledge exists about pelvic cancer survivors’ LRTI symptoms, distress, and health-related quality of life (HRQOL). We sought to assess the symptom burden, distress, and HRQOL in survivors with established pelvic LRTIs compared to norm populations and to investigate the relation between these factors.MethodsCancer survivors referred for treatment of established pelvic LRTIs were recruited nationwide. LTRIs were assessed with the Expanded Prostate Cancer Index Composite (EPIC), psychological distress was assessed with the General Health Questionnaire (GHQ-12), and HRQOL was assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORCT-QLQ-C30).ResultsA total of 107 participants (mean age 64, 53% men) were included. Compared to norms, participants reported more urinary (mean 68.7 vs. 89.5; p = 0.00; d = 1.4) and bowel symptoms (mean 62.5 vs. 92.4; p = 0.00; d = 2.7), increased psychological distress (mean 13.4 vs. 10.3; p = 0.00; d = 0.6), and overall poorer HRQOL (mean 54.9 vs. 71.2; p = 0.00; d = 0.7). Higher symptom burden and higher levels of psychological distress were associated with lower HRQOL (r2 = 46%), but psychological distress did not moderate the influence of symptoms on HRQOL.ConclusionCancer survivors with established pelvic LRTIs are highly burdened compared to norms. The association of the LRTI-related symptom burden with HRQOL is independent of the level of psychological distress. Both coping and treatment interventions are crucial to promoting long-term health and HRQOL.Trial registrationNCT03570229.

Long‐term health‐related quality of life in young childhood cancer survivors and their parents

Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. We recruited parents of survivors who were currently <16years, and >5years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. One hundred eighty-two parents of survivors (mean age=12.4years old and 9.7years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p<.009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents' average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p<.0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors' late effects and improving parents' resilience through survivorship may improve HRQoL in long-term survivorship.

Clusters Across Multiple Domains of Health-Related Quality of Life Reveal Complex Patient Outcomes After Subarachnoid Hemorrhage.

Patients with subarachnoid hemorrhage were prospectively identified. Clinical data were prospectively recorded. Health-related quality of life was prospectively assessed at 3-month follow-up using the National Institutes of Health Patient Reported Outcomes Measurement Information System and neuro-quality of life in the domains of mobility, cognitive function, satisfaction with social roles, and depression. We used k-means clustering to analyze prospectively recorded health-related quality of life data, identifying clusters of complex patient outcomes. Decision tree analysis identified index hospital stay factors predictive of a patient having a particular complex patient outcome at follow-up. Academic medical center. One hundred three survivors of subarachnoid hemorrhage. None. We analyzed 103 patients, of whom 75 (72.8%) were female, and mean age was 53.6 ± 13.4 years. There were three complex patient outcomes: health-related quality of life greater than 1 sd better than the U.S. mean across all domains (n = 23, 22.3%), health-related quality of life greater than 1 sd worse than U.S. mean across all domains (n = 26, 25.2%), and satisfaction with social roles greater than 0.5 sd worse than U.S. mean with cognitive function, depression, and mobility scores near the U.S. mean (n = 54, 52.4%). In decision tree analysis, hospital disposition and Hunt and Hess Grade were associated with complex patient outcome. Complex patient outcomes across multiple domains of health-related quality of life at follow-up after subarachnoid hemorrhage are distinct and may be predictable.

Clinical Results and Quality of Life after Nonelective Cardiac Surgery in Octogenarians.

We analyzed the short-term and mid-term outcomes as well as the health-related quality of life (HRQOL) of octogenarians undergoing elective and urgent cardiac surgery. We retrospectively identified 688 consecutive octogenarians who underwent cardiac surgery at our center between January 2012 and December 2019. A propensity score matching was performed which resulted in the formation of 80 matched pairs. The patients were interviewed and the Short Form-36 survey was used to assess the HRQOL of survivors. Multivariable analysis incorporated binary logistic regression using a forward stepwise (conditional) model. The median age of the matched cohort was 82 years (p = 0.937), among whom, 38.8% of patients were female (p = 0.196). The median EuroSCORE II of the matched cohort was 19.4% (10.1-39.1%). The duration of postoperative mechanical ventilation was found to be independently associated with in-hospital mortality (odds ratio: 1.01 [95% confidence interval: 1.0-1.02], p = 0.038). The survival rates at 1, 2, and 5 years was 75.0, 72.0, and 46.0%, respectively. There was no difference in the total survival between the groups (p = 0.080). The physical health summary score was 41 (30-51) for the elective patients and 42 (35-49) for the nonelective octogenarians (p = 0.581). The median mental health summary scores were 56 (48-60) and 58 (52-60), respectively (p = 0.351). Cardiac surgery can be performed in octogenarians with good results and survivors enjoy a good quality of life; however, the indication for surgery or especially for escalation of therapy should always be made prudently, reserved, and in consideration of patient expectations.

Racial/ethnic differences in health-related quality of life among female breast cancer survivors: cross-sectional findings from the Medical Expenditure Panel Survey

ObjectivesBreast cancer survivors have reported worse health-related quality of life (HRQoL) outcomes on some subscales when compared with members of the general population. However, the increased attention to breast cancer survivorship should have improved the HRQoL of these survivors. Our aim was to examine whether physical and mental component scores (PCS-12 and MCS-12) using the Short Form (SF-12) questionnaire were different for racial/ethnic minorities, specifically for Black and Hispanic women relative to White women. Furthermore, we stratified the data by age group to evaluate these racial/ethnic differences in HRQoL of breast cancer survivors. Study designCross-sectional study. MethodsPooled cross-sectional analyses using data from the Medical Expenditure Panel Survey between 2008 and 2016 were conducted. Pooled ordinary least squares (OLS) regression was used to examine the racial/ethnic differences in PCS-12 and MCS-12 scores of breast cancer survivors. Furthermore, stratified analyses by age group were conducted to evaluate racial/ethnic differences in HRQoL by the age of breast cancer survivors. ResultsAfter adjusting for confounders, there was no association between race/ethnicity and PCS-12 scores. However, Hispanic breast cancer survivors had statistically significantly lower MCS-12 scores (by 1.9 points [95% confidence interval {CI}: −3.53 to −0.37]) when compared with White breast cancer survivors. For PCS-12, after stratifying by age, the adjusted analyses showed no significant differences in PCS-12 scores when White female breast cancer survivors were compared with the other racial/ethnic categories. On the other hand, Black female survivors aged <50 years had 4.3 points (95% CI: 0.46–8.13) higher MCS-12 scores when compared with their White counterparts, while Hispanic breast cancer survivors aged <50 years had 3.1 points (95% CI: −0.40–6.69) higher MCS-12 scores relative to White women. Furthermore, among female breast cancer survivors aged ≥50 years, Hispanic women had 3.2 points (95% CI: −4.98 to −1.40) lower MCS-12 scores than White women. ConclusionOur study generated findings showing the racial/ethnic differences in HRQoL of breast cancer survivors and presented results stratified by age group. These findings provide the much-needed rationale for targeted and racial/ethnic-specific HRQoL improvement strategies among breast cancer survivors.

Health-Related Quality of Life in a Cohort of Breast Cancer Survivors over More Than 10 Years Post-Diagnosis and in Comparison to a Control Cohort.

Simple SummaryBreast cancer survivors often experience long-term side-effects of the disease and its treatment that negatively impact their quality of life. However, to date only few long-term studies on breast cancer survivor’s quality of life exist and it is unclear whether or not breast cancer survivors experience a worse quality of life than women without breast cancer. We therefore investigated breast cancer survivor’s quality of life before diagnosis, during active treatment as well as 5 and 10 years after diagnosis and compared it to the quality of life in women without breast cancer. We found that breast cancer survivor’s quality of life over all ages improved in the first 5 years and then started to deteriorate. After 10 years it was comparable to women without breast cancer. Yet, we showed that survivors of different ages experience differences in health related quality of life over time. Most importantly, we showed that 10 years after diagnosis younger patients reported a worse quality of life than women of the same age that never had breast cancer. These findings are important when trying to optimize long-term care of breast cancer survivors.Background: Breast cancer (BC) survivors often suffer from late and long-term residual symptoms of the disease and its treatment. To date, long-term health-related quality of life (HRQoL) in breast cancer survivors has been seldom investigated and rarely compared to unaffected women (controls). Aim: This study aimed to investigate HRQoL over time using patient-reported status before diagnosis, during treatment, 1 year post-surgery, approx. 5 years and ≥10 years post-diagnosis. We also compared survivors’ HRQoL with controls’ still alive 10 years after recruitment. Methods: Data from the German population-based Mamma Carcinoma Risk Factor Investigation (MARIE) cohort of 1123 BC patients aged 50–74 years at diagnosis (2002–2005) and of 3453 matched controls were used for analysis. HRQoL was assessed with the European Organization for Research and Treatment of Cancer (EORTC QLQ-C30) questionnaire. All analyses were conducted for all ages as well as stratified according to three age groups (≤58 years, 59–64 years, ≥64 years). Differences in survivors’ general HRQoL before, during, and after therapy were investigated using a t-test/Wilcoxon signed-rank test. Changes in the HRQoL of survivors stratified by age from FU1 to FU2 were assessed via repeated analysis of variance. The HRQoL of survivors compared to the controls at FU2 was analyzed using an analysis of variance. Results: Over all ages, the general HRQoL in patients improved in the first 5 years post-diagnosis. In the subsequent years, HRQoL slightly deteriorated but was comparable to that of the controls. Younger survivors mostly improved their HRQoL from the 5 to 10-year follow-up but remained negatively affected for most functioning and symptom scales compared to controls. In older survivors, HRQoL hardly changed over time and detriments were less pronounced compared to controls, except for insomnia. Conclusions: Restrictions of HRQoL persist for more than 10 years and are most prominent among younger survivors. Researchers and clinicians should be aware of such potential deteriorations and age-dependent differences in order to optimize/adapt long-term cancer survivor care.

Coping Trajectories and the Health-Related Quality of Life of Childhood Cancer Survivors.

To identify coping trajectories from diagnosis through survivorship and test whether particular trajectories exhibit better health-related quality of life (HRQOL) at 5 years post-diagnosis. Families of children with cancer (ages 5-17; M = 10.48, SD = 4.03) were recruited following a new diagnosis of cancer (N = 248). Three follow-up assessments occurred at 1-year (N = 185), 3-years (N = 101), and 5-years (N = 110). Mothers reported on children's coping using the Responses to Stress Questionnaire for Pediatric Cancer. Survivor HRQOL was measured at 5-year follow-up using self-report on the PedsQL 4.0. Longitudinal patterns of coping were derived using Latent Class Growth Analysis and mean-levels of survivor-report HRQOL were compared across classes. Two primary control coping trajectories emerged, "Moderate and Stable" (50%) and "Low-moderate and Decreasing" (50%), with no significant differences in HRQOL across trajectories. Three secondary control coping trajectories emerged, "Moderate-high and Increasing" (54%), "Moderate and Stable" (40%), and "High and Increasing" (6%), with survivors in the last trajectory showing better HRQOL. Two disengagement coping trajectories emerged, "Low and Stable" (85%) and "Low and Variable" (15%), with no significant differences in HRQOL across trajectories. Coping trajectories were relatively stable from diagnosis to 5 years. A small group of survivors with high and increasing secondary control coping over time, per mother-report, reported better HRQOL. Future research should consider tailoring coping interventions to children with cancer to improve survivors' HRQOL.

Health-related quality of life among survivors in minority area 2 years after Jiuzhaigou earthquake: A cross-sectional study.

To investigate the health-related quality of life (HRQoL) and related factors, the symptoms of posttraumatic stress disorder (PTSD) among earthquake survivors in minority area 2 years after Jiuzhaigou earthquake.Two years after the Jiuzhaigou earthquake, a cross-sectional survey was conducted by a multi-stage sampling approach. HRQoL was measured by the short form 12 (SF-12), PTSD was measured by the PTSD Check List-Civilian Version (PCL-C), and social support was measured by the Multidimensional Scale of Perceived Social Support. Descriptive statistics, t-tests, ANOVA and multiple linear regression analysis were used for data analysis.Of the 561 participants, the mean scores on the physical component summary (PCS) and mental component summary (MCS) were 46.36 ± 12.79 and 55.03 ± 8.73, and 5.73% reported the symptoms of PTSD. Lower PCS and MCS after an earthquake were associated with elderly age, physical illness, and low level of social support (P < .05). Meanwhile, PTSD was significantly associated with MCS.These findings showed that physical disease and psychological symptoms can adversely affect the HRQoL of survivors. Moreover, providing higher social support to survivors should be considered as a way to improve the HRQoL outcomes of survivors.

Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE.

BackgroundSurvival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL).ObjectiveThe project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country.MethodsA total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort.ResultsWe identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants.ConclusionsPanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL.International Registered Report Identifier (IRRID)RR1-10.2196/21851

Abstract 5756: Examining the relationship between medication utilization and health-related quality of life (HRQOL) among breast cancer patients with comorbidities: A Surveillance Epidemiology and End Results and Medicare Health Outcomes Survey (SEER-MHOS) analysis

Abstract Background The population of 17 million cancer survivors in the US is projected to steadily increase by 29% in 2029. With advancing age, cancer incidence increases; therefore, the increase of cancer survivors aged 65 and older is expected to place undue burden on the healthcare system. Older cancer patients have higher prevalence of comorbid conditions, which contributes to a higher overall illness burden compared to younger cancer patients and may require complex medication management during cancer treatment. Cancer patients with multiple comorbid conditions report lower health-related quality of life (HRQOL). Women with breast cancer (BC) experience noticeable comorbidity prevalence rates (30%) that can negatively influence HRQOL and increase breast cancer mortality by 20-50%. The causes of HRQOL deficits are likely multifactorial, including demographic and clinical factors which require further investigation. Furthermore, research examining the relationship between medication management, comorbidities, and HRQOL in cancer patients, including stratifying the potential role of obesity that contributes to changes in HRQOL, is limited. Further research addressing the medication management of comorbid conditions can improve understanding of HRQOL in BC patients. Objectives To investigate the association of the medication management of hypertension, diabetes, and respiratory conditions on BC survivor's HRQOL. The secondary objective is to evaluate the role of obesity in medication management for these conditions and resultant changes in HRQOL. Methods Patients diagnosed with Stage I-IV BC between 2007-2016 were identified from the Surveillance Epidemiology and End Results (SEER) and Medicare Health Outcomes Survey (MHOS; SEER-MHOS) data resource. Descriptive statistics and multivariate models, including demographics, clinical characteristics, and Medicare Part D claims, was used to evaluate medication management and potential underlying associations. HRQOL was assessed using the VR-12. Obesity was calculated from self-reported height and weight at the time of survey. Results The study population for this analysis includes 1,016 breast cancer patients diagnosed between 2007-2016 in the SEER-MHOS dataset with continuous Part D coverage one year before and after diagnosis. Among these patients, 85% reported at least one comorbid condition. Further analysis is in progress. Conclusions Understanding the potential aspects of treatment that influence HRQOL can provide further insights into patient-reported experiences and may improve standards of care to support older BC survivors with chronic comorbid conditions. Citation Format: Melissa A. Bruno, Roxanne Jensen, Catherine Wang, Dannielle Kelley, Erin Kent, Donna R. Rivera. Examining the relationship between medication utilization and health-related quality of life (HRQOL) among breast cancer patients with comorbidities: A Surveillance Epidemiology and End Results and Medicare Health Outcomes Survey (SEER-MHOS) analysis [abstract]. In: Proceedings of the Annual Meeting of the American Association for Cancer Research 2020; 2020 Apr 27-28 and Jun 22-24. Philadelphia (PA): AACR; Cancer Res 2020;80(16 Suppl):Abstract nr 5756.

The quality of acute intensive care and the incidence of critical events have an impact on health-related quality of life in survivors of the acute respiratory distress syndrome - a nationwide prospective multicenter observational study.

Background: Initial treatment (ventilator settings, rescue therapy, supportive measures), and prevention of critical events improve survival in ARDS patients, but little data exists on its effect on health-related quality of life (HRQOL) and return to work (RtW) in survivors. We analyzed the association of the intensity of treatment at ARDS onset and the incidence of critical events on HRQOL and RtW a year after ICU discharge.Methods: In a prospective multi-centre cohort study, the intensity of treatment and the incidence of critical events were determined at 61 ICUs in Germany. At 3, 6, and 12 months, 396 survivors reported their HRQOL (Short-Form 12) and RtW. The parameters of the intensity of acute management (lung protective ventilation, prone position, hemodynamic stabilization, neuromuscular blocking agents), and critical events (hypoxemia, hypoglycemia, hypotension) were associated with HRQOL and RtW.Results: Patients ventilated at ARDS onset with a low tidal volume (VT≤7 ml/kg) had higher arterial carbon dioxide levels (PaCO2=57.5±17 mmHg) compared to patients ventilated with VT>7ml/kg (45.7±12, p=0.001). In a multivariate adjusted dichotomized analysis, a better mental 3-month SF-12 was observed in the higher VT-group (mean 43.1±12) compared to the lower VT-group (39.5±9, p=0.042), while a dichotomized analysis for driving pressures (≤14 mbar vs >14 mbar) did not show any difference neither in PaCO2 levels nor in HRQOL parameters. A decrease in the mental (6-month: 40.0±11 vs 44.8±13, p=0.038) and physical SF-12 (12-month: 38.3±11 vs 43.0±13, p=0.015) was reported from patients with hypoglycemia (blood glucose <70 mg/dl) compared to those without hypoglycemic episodes. More frequent vasopressor use with mean arterial pressure ≥65 mmHg was associated with an impaired physical SF-12 (6-month: 38.8±10) compared to less vasopressor use (43.0±11, p=0.019).Conclusions: In acute management of ARDS, a lower VT strategy associated with hypercapnia, as well as the frequent usage of catecholamines and the management of blood glucose may influence short-term HRQOL of survivors. The awareness of these findings is of clinical importance for the acute and post-ICU care.

Health-related quality of life and long-term sequelae in survivors of epidermal necrolysis: an observational study of 57 patients.

Few studies have investigated the global burden of sequelae and health-related quality of life (HRQoL) for survivors of epidermal necrolysis (EN). To investigate the long-term HRQoL for survivors of EN using validated instruments. We conducted a single-centre study that enrolled patients who were admitted for EN between 2010 and 2017. HRQoL was assessed via phone interview using the Short Form (SF)-36 questionnaire, Hospital Anxiety and Depression (HAD) scale, Impact of Event Scale-Revised, and general quality-of-life outcomes, including EN-specific sequelae. The primary outcome measure was the physical component summary (PCS) score of the SF-36. In total, 57 survivors of EN [19 (33%) with intensive care unit (ICU) admission] were interviewed via telephone at a median of 3·6 years (1·9-6·1) after hospital discharge. The median PCS score was 0·44 SDs below that of the age- and sex-matched reference population and was significantly lower for survivors of EN who were admitted to the ICU vs. those who were not [43·7 (28·7-49·3) vs. 51·2 (39·4-56·5), P = 0·042]. The proportion of patients with EN who had HAD-anxiety score ≥ 8 or HAD-depression score ≥ 5 was 54% and 21%, respectively. Physical and mental outcomes did not differ between patients with EN who were admitted to the ICU and survivors of septic shock. Reported EN-specific sequelae were cutaneous (77%), ocular (70%), psychological (60%), dental/oral (49%), genital (30%) and respiratory (18%), with median intensity on a visual analogue scale. Our study confirms the major burden and long-term impact of EN on quality of life for survivors and emphasizes the need for prolonged close follow-up after the acute phase. What's already known about this topic? Long-term sequelae have been reported in 90% of survivors of epidermal necrolysis (EN). Few studies have investigated the global burden of sequelae and health-related quality of life (HRQoL) in survivors of EN. What does this study add? Survivors of EN, particularly those admitted to the intensive care unit, had poorer physical HRQoL than the French reference population but had comparable HRQoL to survivors of septic shock. Survivors of EN exhibited symptoms of anxiety, depression and post-traumatic stress syndrome. The most frequent sequelae were cutaneous, ocular and psychological, with visual analogue scale scores of 5/10 and 6/10. These results confirm the burden of EN on quality of life.

Spontaneous Aneurysmal Subarachnoid Hemorrhage and Related Cortisol and Immunologic Alterations: Impact on Patients' Health-related Quality of Life

To highlight the impact of aneurysmal subarachnoid hemorrhage (SAH) on surviving patients' health-related quality of life (HRQoL) with respect to cortisol and interleukin (IL)-6 alterations and also to identify possible clinical predictors for a better HRQoL. Fifty surviving patients treated in our hospital for aneurysmal SAH in a 2-year period with sufficient HRQoL data were enrolled. A good clinical outcome was represented by the modified Rankin Scale (mRS) 0 to 2. The patient's HRQoL was assessed using the Short Form health survey questionnaire, the Beck Depression Inventory, and the Daily Fatigue Impact Scale at 6 and 12 months. The results were analyzed regarding possible correlation to 24-hour urinary free cortisol, serum, and cerebrospinal fluid IL-6 levels. A reduction of HRQoL in up to 35% of survivors was observed at 6 months and in a high proportion of patients (47.2%) with an assumable good outcome (mRS 0-2). Reduced HRQoL in survivors was found in terms of SF-36 (34.9%), depression (26.8%), and fatigue (14%) at 6 months and 18.4%, 39.4%, and 18.9% at 12 months, respectively. Improvement was recorded at 12 months, mainly in SF-36. Early elevated 24-hour urinary free cortisol and IL-6 levels showed a significant positive impact on HRQoL. Early cortisol and IL-6 levels may predict patients' HRQoL after SAH. Twelve months after SAH, a considerable percentage of patients with a presumably good outcome (mRS 0-2) had a lower HRQoL compared with the general population. Implementing corresponding tests at discharge and 12-month follow-up is recommended.

MON-558 Radioiodine Is Not Associated with Quality of Life Outcomes in Early Stage Thyroid Cancer Survivors, a Matched-Pair Analysis.

Background: Radioiodine ablation (RAI) is often given as adjuvant therapy following thyroidectomy for differentiated thyroid cancer (DTC). The benefits of RAI are unclear in low-risk DTC, and the effects of RAI on health-related quality of life (HRQoL) are not well described. We hypothesized RAI would be associated with lower HRQoL in survivors of DTC. Methods: A matched-pair analysis was performed using DTC survivors >18 years of age recruited from a thyroid cancer support group. Demographics, clinical features, treatments and surgical complications were self-reported via online survey. Postoperative dysphonia and dysphagia, and post-RAI xerostomia and dysphagia were assessed using Likert scale. HRQoL was evaluated using PROMIS-29 domains of anxiety, depression, fatigue, pain, physical function, sleep disturbance, and social role function. Stage I respondents who received RAI were matched for age, sex, race, and years since diagnosis against those who did not receive RAI. PROMIS T-scores were compared between RAI and no RAI groups by univariate analysis and Wilcoxon rank-sum test. A mean T-score difference of 3 or more was considered clinically significant. Categorical outcomes were assessed via Fisher’s exact test, alpha set at 0.05. Results: 138 pairs were matched for extent of surgery, stage, age, sex, race, and years since diagnosis. Mean age was 43.7+/-11.6 and 44.8+/-10.9 years, and mean time since surgery was 2.6+/-2.6 and 2.7+/-2.5 years for RAI and no RAI groups, respectively. There was no difference in incidence of the surgical complications of hypocalcemia (p=0.76), infection (p=0.61), dysphonia (p=0.87), or dysphagia (p=0.74) between the RAI and no RAI groups. There was no significant difference between mean PROMIS T-scores in any PROMIS domains. In those respondents reporting normal preoperative voice and swallowing (86 pairs), the mean T-score in the pain domain in the RAI group (53.9+/-10.3 vs 49.8+/-10.5; p=0.009) was clinically and statistically significantly higher than the no RAI group. 9.3% reported chronic xerostomia and dysphagia that developed after RAI. Conclusions: This is the first study to use PROMIS measures to evaluate the association between RAI and HRQoL in early stage DTC. In a matched-pair analysis of DTC survivors with stage 1 disease, no statistically significant difference was identified in HRQoL between groups that did or did not receive RAI. In subset analysis of respondents who reported normal preoperative voice and swallowing, RAI was associated solely with worse scores in the PROMIS pain domain.​ Further investigation is needed to describe why patients treated with RAI experience more pain.

Long-term quality of life after definitive treatment of sinonasal and nasopharyngeal malignancies.

To evaluate long-term global and site-specific health-related quality of life (HRQoL) in patients treated for sinonasal and nasopharyngeal malignancies. Cross-sectional. One hundred fourteen patients with sinonasal and nasopharyngeal malignancies received surgery, radiation, systemic chemotherapy, or a combination thereof, with curative intent. Validated global ([EuroQol-5D] Visual Analogue Scale [EQ-5D VAS]) and disease-specific instruments (MD Anderson Symptom Inventory-Head and Neck [MDASI-HN], Anterior Skull Base Questionnaire [ASBQ]) were administered to patients who were both free of disease and had completed treatment at least 12 months previously. Associations between instruments, instrument domains, and specific clinical parameters were analyzed. The median age was 55 years. The mean EQ-5D VAS, MDASI-22 composite score, and ASBQ score were 74 (standard deviation [SD] 21), 48 (SD 36), and 130 (SD 27), respectively. The most frequently reported high-severity items in MDASI-HN were dry mouth and difficulty tasting food. The most frequently reported high-severity items in ASBQ were difficulty with smell and nasal secretions. Advanced Tumor (T) classification was associated with worse overall ASBQ sum score (P = 0.02). ASBQ performance at home and MDASI-HN drowsy symptom items independently predicted worse global HRQoL as measured by the EQ-5D VAS (P < 0.001). Global HRQoL for survivors of sinonasal and nasopharyngeal malignancies after multimodality treatment approximates that of the U.S. population for the same age group. ASBQ and MDASI-HN correlate well with global HRQoL outcomes as measured by EQ-5D VAS. MDASI-HN and ASBQ elicited unique symptoms, highlighting the complex symptom burden experienced by these patients. Further studies should identify patients predisposed to reduced long-term QOL. 3 Laryngoscope, 130:86-93, 2020.

Long-Term Gynecological Cancer Survivors in Côte d'Or: Health-Related Quality of Life and Living Conditions.

The likelihood that health-related quality of life (HRQoL) could depend on factors other than clinical data increases with the duration of follow-up since diagnosis. The aim of this study was to identify determinants of long-term HRQoL in women with cervical, endometrial, and ovarian cancer. Secondary objectives were to describe their living conditions (sexual function, psychological distress, social and professional reinsertion). In a cross-sectional survey, women diagnosed with cervical, endometrial, and ovarian cancers from 2006 to 2013 were selected through the French gynecological cancers registry of Côte d'Or. Validated questionnaires exploring HRQoL (short-form health survey; SF-12), anxiety and depression (Hospital Anxiety and Depression Scale), social support (Sarason's Social Support Questionnaire), sexual function (Female Sexual Function Index), and living conditions (EPICES questionnaire) were used to assess HRQoL and its determinants. Social and professional reinsertion were also investigated using study-specific questionnaires. Determinants of HRQoL were identified using a multivariable mixed-regression model for each composite score of the SF-12. In total, 195 gynecological cancer survivors participated in the survey. HRQoL was deteriorated for almost all the SF-12 dimensions. The main determinants of poor HRQoL were comorbidities, deprivation, lack of availability and satisfaction with social support, and psychological outcomes. Thirty-four percent of survivors of gynecological cancer reported a negative impact of cancer on their work, and 73% reported an impaired ability to work after treatment. Long-term HRQoL of survivors of gynecological cancer is not impacted by stage of disease. Specific interventions should focus on issues that promote social and professional reintegration and improve HRQoL. This study shows that women with gynecological cancer have problems related to work and sexual dysfunction, even 5 years after diagnosis. The results of this study will help improve clinicians' awareness of the factors affecting the lives of gynecological cancer survivors, even long after diagnosis and treatment. They will also highlight for clinicians the areas that are of importance to gynecological cancer survivors, making it possible to guide management of these patients with a view to preventing deteriorated health-related quality of life after treatment. For the health authorities, the results of this study underline that more than 5 years after gynecological cancer, the initial stage of disease no longer affects quality of life, but there is a clear need for actions targeting socio-professional reintegration of survivors.

Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia.

Congenital diaphragmatic hernia (CDH) survivors experience increased risk of medical and neurodevelopmental challenges. This study describes the health-related quality of life (HRQOL), special education utilization and the family impact among neonatal CDH survivors. A single-center prospective cohort of CDH survivors born between 1995 and 2006 was followed. Parents completed the PedsQL HRQOL index and a Family Impact survey to assess the need for medical equipment, home health services, and special education and quantify the burden placed on the family by their child's medical needs. Parents of 32 survivors participated at a mean survivor age of 8 ± 4years. Many survivors utilized medical equipment (62%), home health services (18%) and special education (28%). CDH survivor HRQOL (79 ± 17) did not differ significantly from that of healthy children (83 ± 15, p = 0.12). HRQOL was diminished among survivors who required special education (67 ± 8 vs 82 ± 3; p = 0.04) and those reporting increased Family Impact score (p = 0.001). Many CDH survivors continue to require home medical equipment and home health services at school age. Most survivors have normal parent-reported HRQOL; however, the need for special education and higher family impact of neonatal CDH correlates with decreased HRQOL.

Systematic Review of Invasive Meningococcal Disease: Sequelae and Quality of Life Impact on Patients and Their Caregivers.

IntroductionInvasive meningococcal disease (IMD, septicaemia and/or meningitis) has a severe acute and long-term burden: 5–10% of patients die within 48 h, and long-term sequelae have been reported in 10–20% of survivors. Health-related quality of life (HRQoL) is increasingly but inconsistently assessed.MethodsA systematic literature review on Neisseria meningitidis IMD sequelae and HRQoL in survivors of all ages and their caregivers, including family, was conducted for high-income countries from 2001 to 2016 (in Medline and Embase, following Cochrane and PRISMA guidelines).ResultsA total of 31 studies, mostly of childhood IMD cases, were included. A broad range of physical, neurological and psychological IMD sequelae were identified. The literature has evolved, with more types of sequelae reported in more recent studies; however, meningococcal disease-specific and sequelae-specific HRQoL data are lacking, and existing studies used a wide variety of instruments. Physical sequelae included: amputations (up to 8% of children, 3% adolescents/adults) and skin scars (up to 55% of children, 18% adolescents, 2% adults). Neurologic sequelae included: hearing loss (up to 19% of infants, 13% children, 12% adolescents, 8% adults). Psychological sequelae included: anxiety, learning difficulties, emotional and behavioural difficulties. IMD negatively affects HRQoL in patients and also in their family and close caregiver network, both in the short- and long-term. Even IMD survivors without sequelae experienced an adverse impact on HRQoL after many years, affecting self-esteem, physical, mental and psychosocial health, and HRQoL was worse in those with cognitive and behavioural sequelae.ConclusionA high proportion of IMD survivors are affected by a broad range of sequelae and reduced HRQoL that persists years after infection. Childhood IMD survivors had more sequelae and more severe sequelae compared with adult survivors. HRQoL was affected in patients and also in their families, caregivers and surrounding network over the long term. More research is needed to resolve data gaps and to standardise HRQoL assessment.FundingGlaxoSmithKline Biologicals SA (Rixensart, Belgium).Electronic supplementary materialThe online version of this article (10.1007/s40121-018-0213-2) contains supplementary material, which is available to authorized users.

05 Long-term health-related quality of life in adult survivors of pediatric intracranial germ cell tumour

PURPOSE: To investigate health-related quality of life (HRQOL ) in survivors of intracranial germ cell tumors (IGCT). METHODS: Survivors of IGCT were invited to complete the 36-Item Short Form Survey Instrument (SF-36). The SF-36 is scored from 0-100, with a higher number representing a more favorable HRQOL. RESULTS: The study cohort consisted of 12 survivors of IGCT, 6 males and 6 females. Median age was 13 years at diagnosis, and 26 years at time of study. Median follow-up was 11 years. Five patients had germinomas, and 7 had non-germinomatous germ cell tumors. All 12 patients received radiation therapy (RT), 10 to the craniospinal axis, 1 to the whole ventricles and 1 to the tumor bed alone. Nine patients received chemotherapy. Mean SF-36 scores were 67.9 (standard deviation [SD] 33.2) for physical functioning, 58.3 (SD 37.4) for role limitations due to physical health, 77.8 (SD 32.8) for role limitations due to emotional problems, 43.1 (SD 18.4) for vitality, 74.3 (SD 15.3) for mental health; 62.5 (SD 32.0) for social functioning, 74.2 (SD 33.4) for pain, and 57.1 (SD 24.0) for general health; mean scores were &gt;1 SD lower than that of Canadian normative data for vitality, social functioning and general health. Physical component score was 43.6 (SD 13.9) and mental component score was 47.6 (SD 11.2), normalized to a US population with mean of 50 and SD of 10. CONCLUSIONS: Long-term HRQOL for survivors of IGCT is lower than that of the overall population, particularly in vitality, social functioning and general health.