Quality Of Life In Survivors Research Articles

The impact of Nutrition and Gastrointestinal Symptoms on Health-related Quality of Life in Survivorship after Oesophageal Cancer Surgery

Background and AimsOesophagectomy is the primary curative treatment for oesophageal cancer but is associated with considerable postoperative morbidity and mortality. To better understand the aetiology of impaired health-related quality of life (HRQL) in oesophageal cancer survivors (OCS), this study sought to determine the longitudinal changes in nutritional status, nutrition-impact symptoms (NIS), and HRQL in this cohort, and to determine which variables have the greatest impact on postoperative HRQL decline.MethodsData, derived from St. James' Hospital, Dublin, included patients who underwent oesophagectomy from October 2017 to May 2019 and attended clinic preoperatively and 6 months postoperatively. A subset attended a further 12-month appointment. HRQL and symptom data were collected using validated questionnaires and anthropometric measures were completed by clinicians. Data were analysed using SPSS.ResultsA total of 66 patients were studied preoperatively and 6 months postoperatively, of whom 37 were studied at 12 months postoperatively. Malnutrition remained prevalent at each time-point, although rates did not significantly change longitudinally. Conversely, the prevalence of malabsorption (7.6%–14.3%, P<0.001) and dumping syndrome (67.7%–74.3%, P=0.003) significantly increased with increasing time postoperatively. NIS were significantly associated with impaired HRQL function scores and were independent predictors of global quality of life (gQOL) score postoperatively (P=0.004). A diagnostic threshold of gastrointestinal symptom severity (11.5) that identifies patients at risk of impaired gQOL was therefore reported.ConclusionMalnutrition and NIS are prevalent post-oesophagectomy, the latter significantly associated with reduced HRQL. Targeted intervention in those with severe NIS could be highly beneficial, highlighting the need for dietetic input in OCS. Oesophagectomy is the primary curative treatment for oesophageal cancer but is associated with considerable postoperative morbidity and mortality. To better understand the aetiology of impaired health-related quality of life (HRQL) in oesophageal cancer survivors (OCS), this study sought to determine the longitudinal changes in nutritional status, nutrition-impact symptoms (NIS), and HRQL in this cohort, and to determine which variables have the greatest impact on postoperative HRQL decline. Data, derived from St. James' Hospital, Dublin, included patients who underwent oesophagectomy from October 2017 to May 2019 and attended clinic preoperatively and 6 months postoperatively. A subset attended a further 12-month appointment. HRQL and symptom data were collected using validated questionnaires and anthropometric measures were completed by clinicians. Data were analysed using SPSS. A total of 66 patients were studied preoperatively and 6 months postoperatively, of whom 37 were studied at 12 months postoperatively. Malnutrition remained prevalent at each time-point, although rates did not significantly change longitudinally. Conversely, the prevalence of malabsorption (7.6%–14.3%, P<0.001) and dumping syndrome (67.7%–74.3%, P=0.003) significantly increased with increasing time postoperatively. NIS were significantly associated with impaired HRQL function scores and were independent predictors of global quality of life (gQOL) score postoperatively (P=0.004). A diagnostic threshold of gastrointestinal symptom severity (11.5) that identifies patients at risk of impaired gQOL was therefore reported. Malnutrition and NIS are prevalent post-oesophagectomy, the latter significantly associated with reduced HRQL. Targeted intervention in those with severe NIS could be highly beneficial, highlighting the need for dietetic input in OCS.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&amp;C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

Disparities in Female Pediatric, Adolescent and Young Adult Oncofertility: A Needs Assessment.

Simple SummaryThe following review addresses the effects of cancer and cancer treatments on fertility and reproductive health, and reviews standard and novel fertility preservation options. This article presents a needs assessment focusing on disparities in access to care for the pediatric, adolescent, and young adult (AYA) population to include cost, provider bias, inequitable referral patterns to reproductive specialists, and a lack of knowledge within the medical community regarding assisted reproductive technologies and reproductive health care in survivorship. The information presented in this article is targeted to oncologists, gynecologists, pediatric subspecialists, and primary care providers who care for this population and introduces areas for further research to address gaps in care and improve access for this population.Advancements in cancer screening and implementation of targeted treatments have significantly improved survival rates to 85% for pediatric and AYA survivors. Greater than 75% of survivors will live to experience the long-term adverse outcomes of cancer therapies, termed late effects (LE), that disrupt quality of life (QoL). Infertility and poor reproductive outcomes are significant disruptors of QoL in survivorship, affecting 12–88% of survivors who receive at-risk therapies. To mitigate risk, fertility preservation (FP) counseling is recommended as standard of care prior to gonadotoxic therapy. However, disparities in FP counseling, implementation of FP interventions, and screening for gynecologic late effects in survivorship persist. Barriers to care include a lack of provider and patient knowledge of the safety and breadth of current FP options, misconceptions about the duration of time required to implement FP therapies, cost, and health care team bias. Developing strategies to address barriers and implement established guidelines are necessary to ensure equity and improve quality of care across populations.

Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey

IntroductionThe supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).MethodsParticipants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC).ResultsIn total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers.ConclusionThis research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

Associations between markers of social functioning and depression and quality of life in survivors of head and neck cancer: Findings from the Head and Neck Cancer 5000 study.

To investigate associations between markers of social functioning (trouble with social eating and social contact), depression and health-related quality of life (QOL) among head and neck cancer survivors. This cross-sectional analysis included individuals with oral cavity, oropharynx, larynx, salivary gland and thyroid cancers from Head and Neck 5000 alive at 12 months. Trouble with social eating and social contact were measured using items from EORTC QLQ-H&N35 and QOL using EORTC QLQ-C30; responses were converted into a score of 0-100, with a higher score equalling more trouble or better QOL. A HADS subscale score of ≥8 was considered significant depression. Associations between tertiles of trouble with social eating and social contact and depression and QoL were assessed using multivariable logistic and linear regression (with robust errors), respectively. Of 2561 survivors, 23% reported significant depression. The median QOL score was 75.0 (interquartile range 58.3-83.3). For trouble with social eating, after confounder adjustment, those in the intermediate and highest tertiles had higher odds of depression (intermediate: OR=4.5, 95% CI 3.19-6.45; high: OR=21.8, 15.17-31.18) and lower QOL (intermediate:β=-8.7, 95% CI -10.35 to -7.14; high: β=-24.8, -26.91 to -22.77). Results were similar for trouble with social contact. We found strong clinically important associations between markers of social functioning and depression and QOL. More effective interventions addressing social eating and contact are required. These may help survivors regain their independence, reduce levels of isolation and loneliness, and depression, and improve QOL outcomes generally.

Thinking ahead: Parents' worries about late effects of childhood cancer treatment.

Many childhood cancersurvivors experience at least one late effect of treatment, and both late effects and persistent cancer-related worry can negatively impact quality of life in survivorship. Little is known about the prevalence or impact of parental worry about late effects early in treatment. This study evaluated parental perceived likelihood, impact, and worry about late effects of childhood cancer. We surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within a year of diagnosis. Parents were asked about their experiences with late effects communication, general worry about late effects, and specific late effect worries. Most (96%) parents valued information about late effects, and 93% considered late effects in their treatment decision-making. Yet, 24% could not recall receiving any information about late effects, and only 51% felt well prepared for potential late effects. Though only 20% of parents considered their child at high risk of experiencing late effects, 61% were extremely/very worried about late effects. Those who felt their child was at high risk of experiencing late effects were more likely to worry (OR=4.7, P=0.02). Many parents feel inadequately informed about late effects of cancer treatment, and only one-fifth of parents consider late effects to be likely for their child. However, a majority of parents worry about late effects, including ones they think their child is unlikely to experience. Although some worry is anticipated, disproportionate worry may be mitigated by addressing both educational shortfalls and emotional concerns.

Health-Related Quality of Life in Survivors of Severe COVID-19 of a University Hospital in Northern Portugal.

Long-term health impairments are often experienced among survivors of critical illness, which may have a negative impact on their quality of life. The aim of this study was to characterize COVID-19 survivors of critical illness and to evaluate health-related quality of life and disability following hospital discharge. This is a retrospective case-series study that included COVID-19 survivors admitted to the Intensive Care Medicine Department of a University Hospital. Follow-up evaluation was performed between the 30th and the 90th day after discharge. Quality of life was explored using the five-level version of the EQ-5D instrument (EQ-5D-5L) and functionality using the 12-question World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0). Forty-five survivors were enrolled, 28 (62.2%) men, median age 63.0 years. The EQ-5D-5L questionnaire showed moderate to extreme problems in some dimension in 29 patients (64.4%): mobility in six (13.3%), self-care in seven (13.3%), usual activities in 23 (51.1%), pain/discomfort in 14 (31.1%) and anxiety/depression in 17 (37.8%). When using the 12-question WHODAS 2.0 questionnaire, moderate to extreme disability was reported in some question in 37 patients (82.2%): 19 (42.2%) in standing for long periods, 18 (40.0%) in long-distance walking; 14 (31.1%) on taking care of household responsibilities and 17 (37.8%) in their day-to-day work; 23 (51.1%) felt emotionally affected by their health problems. Based on COVID-19 survivors-reported outcomes after critical illness, mobility, pain/discomfort, and anxiety/depression were the main problems that persisted one to three months after hospital discharge. An organized follow-up structure is crucial to improve health-related quality of life in critical COVID-19 survivors.

Intranasal delivery of interleukin-4 attenuates chronic cognitive deficits via beneficial microglial responses in experimental traumatic brain injury

Traumatic brain injury (TBI) is commonly followed by long-term cognitive deficits that severely impact the quality of life in survivors. Recent studies suggest that microglial/macrophage (Mi/MΦ) polarization could have multidimensional impacts on post-TBI neurological outcomes. Here, we report that repetitive intranasal delivery of interleukin-4 (IL-4) nanoparticles for 4 weeks after controlled cortical impact improved hippocampus-dependent spatial and non-spatial cognitive functions in adult C57BL6 mice, as assessed by a battery of neurobehavioral tests for up to 5 weeks after TBI. IL-4-elicited enhancement of cognitive functions was associated with improvements in the integrity of the hippocampus at the functional (e.g., long-term potentiation) and structural levels (CA3 neuronal loss, diffusion tensor imaging of white matter tracts, etc.). Mechanistically, IL-4 increased the expression of PPARγ and arginase-1 within Mi/MΦ, thereby driving microglia toward a global inflammation-resolving phenotype. Notably, IL-4 failed to shift microglial phenotype after TBI in Mi/MΦ-specific PPARγ knockout (mKO) mice, indicating an obligatory role for PPARγ in IL-4-induced Mi/MΦ polarization. Accordingly, post-TBI treatment with IL-4 failed to improve hippocampal integrity or cognitive functions in PPARγ mKO mice. These results demonstrate that administration of exogenous IL-4 nanoparticles stimulates PPARγ-dependent beneficial Mi/MΦ responses, and improves hippocampal function after TBI.

Prognostic value of patient-reported quality of life for survival in oesophagogastric cancer: analysis from the population-based POCOP study

BackgroundAccumulating evidence of trials demonstrates that patient-reported health-related quality of life (HRQoL) at diagnosis is prognostic for overall survival (OS) in oesophagogastric cancer. However, real-world data are lacking. Moreover, differences in disease stages and tumour-specific symptoms are usually not taken into consideration. The aim of this population-based study was to assess the prognostic value of HRQoL, including tumour-specific scales, on OS in patients with potentially curable and advanced oesophagogastric cancer.MethodsData were derived from the Netherlands Cancer Registry and the patient reported outcome registry (POCOP). Patients included in POCOP between 2016 and 2018 were stratified for potentially curable (cT1-4aNallM0) or advanced (cT4b or cM1) disease. HRQoL was measured with the EORTC QLQ-C30 and the tumour-specific OG25 module. Cox proportional hazards models assessed the impact of HRQoL, sociodemographic and clinical factors (including treatment) on OS.ResultsIn total, 924 patients were included. Median OS was 38.9 months in potentially curable patients (n = 795) and 10.6 months in patients with advanced disease (n = 129). Global Health Status was independently associated with OS in potentially curable patients (HR 0.89, 99%CI 0.82–0.97), together with several other HRQoL items: appetite loss, dysphagia, eating restrictions, odynophagia, and body image. In advanced disease, the Summary Score was the strongest independent prognostic factor (HR 0.75, 99%CI 0.59–0.94), followed by fatigue, pain, insomnia and role functioning.ConclusionIn a real-world setting, HRQoL was prognostic for OS in patients with potentially curable and advanced oesophagogastric cancer. Several HRQoL domains, including the Summary Score and several OG25 items, could be used to develop or update prognostic models.

A randomized trial of exercise and diet on health-related quality of life in survivors of breast cancer with overweight or obesity.

Obesity is a chronic, relapsing, and progressive disease; it is associated with poor health-related quality of life (HRQOL) in survivors of breast cancer. In this 2 × 2 factorial trial, 351 survivors of breast cancer with overweight or obesity were randomized to 1 of 4 treatment groups for 52 weeks: control, exercise alone, diet alone, or exercise plus diet. HRQOL end points were measured at baseline and at week 52 using the 36-Item Medical Outcomes Survey-Short Form (SF-36). Repeated measures analysis of covariance quantified the estimated treatment difference (ETD). At baseline, participants had a mean (SD) age of 59.4 years (8.7), body mass index of 34.0 kg/m2 (5.9), and 71 participants (20.2%) self-reported fair or poor general health. After 52 weeks, compared with control, the exercise plus diet improved the physical health summary score (ETD: 5.39; 95% CI, 0.55-10.22); exercise alone (ETD: -1.91; 95% CI, -6.60 to 2.79) and diet alone (ETD: 3.16; 95% CI, -1.52 to 7.83) did not change the physical health summary score. Compared with control, exercise alone (ETD: -0.27; 95% CI, -6.60 to 2.79), diet alone (ETD: 3.25; 95% CI, -1.41 to 7.91), and the exercise plus diet (ETD: 1.75; 95% CI, -2.90 to 6.39) did not change the mental health summary score. Exercise alone did not impact any HRQOL subscale; diet alone improved the vitality subscale; exercise plus diet improved the physical functioning, role-physical and vitality subscales. In survivors of breast cancer with overweight or obesity, exercise plus diet improved select HRQOL end points at week 52.

Optimising neurodevelopmental and psychosocial outcomes for survivors with CHD: a research agenda for the next decade.

Neurodevelopmental and psychosocial impairments negatively impact health-related quality of life for survivors with CHD and complicate the transition to independent adulthood. Risk for neurodevelopmental and psychosocial impairments is influenced by a complex interplay among genetic, foetal, surgical, perioperative, family, and social factors, requiring a multi-pronged approach to neuroprotection and intervention. To ensure future research can ultimately reduce the burden of CHD for individuals, families, and society, the most pressing issues in cardiac neurodevelopment requiring scientific investigation must be identified.Through funding from an R13 Grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, the Cardiac Neurodevelopmental Outcome Collaborative convened a two-day meeting of international experts in cardiac neurodevelopmental and psychosocial research, clinical care, and health disparities, including patient and family stakeholders, to define the cardiac neurodevelopmental and psychosocial outcomes research agenda for the next decade. Seven multidisciplinary working groups were formed to address key domains crucial to the advancement of cardiac neurodevelopmental and psychosocial outcomes research: 1) Foetal Brain Development and Neuroprotection, 2) Surgical/Perioperative Neuroprotection and Neurodevelopment, 3) Characterization of Neurodevelopmental and Psychological Outcomes, 4) Neurodevelopmental and Psychosocial Intervention, 5) Parent Mental Health and Family Functioning, 6) Neurodevelopmental Education, Outreach and Advocacy, and 7) Health Disparities and Neurodevelopmental Outcomes. Working groups identified significant gaps in knowledge and critical questions that must be answered to further knowledge, policy, care, and outcomes. The development of a research agenda in cardiac neurodevelopmental and psychosocial outcomes is critical for informing collaborative initiatives and allocation of funding for research to scientific inquiries of highest value to key stakeholders.

Development and validation of a guideline on sexual and reproductive health of breast cancer survivors in Iran: a mixed methods study protocol

BackgroundSexual and reproductive health problems significantly decrease quality of life in survivors of breast cancer. The best approach is to provide services according to evidence-based guidelines developed based on their practical context. Here, we aim to develop and validate a guideline on the sexual and reproductive health of breast cancer survivors in Iran.MethodsThe guideline will be developed and validated using an exploratory sequential mixed methods approach in three phases: (1) describing sexual and reproductive health needs of survivors of breast cancer in Iran and the health services they receive in this regard, (2) performing a systematic review of existing guidelines, resources, and documents on the sexual and reproductive health of breast cancer survivors worldwide, and (3) developing and validating a guideline on the sexual and reproductive health of women who survived breast cancer in Iran based on the results of phases 1 and 2 through multiple steps.DiscussionA comprehensive and practical guideline on the sexual and reproductive health of breast cancer survivors in Iran will be developed which will be compatible with their specific needs and culture, considering the limited resources available. This guideline can significantly improve the quality of life in breast cancer survivors in Iran. In addition, the approach we will use here can be utilized to develop guidelines on sexual and reproductive health of female cancer survivors in general.

Evaluation of long-term radiological findings, pulmonary functions, and health-related quality of life in survivors of severe COVID-19.

ObjectiveIt was aimed to evaluate long‐term radiological changes in severe coronavirus disease 2019 (COVID‐19) patients, to investigate pulmonary function, exercise capacities, and health‐related quality of life results.MethodsSixty‐five patients with severe COVID‐19 pneumonia were evaluated in the sixth month after discharge from the hospital. Spirometry, 6 min walking test (6MWT), and short form of health‐related quality of life scale (SF‐36) were applied in the sixth month. Chest computed tomography (CT) was performed and the findings were grouped according to lung involvement.ResultsForty‐nine male and 16 female patients were included in the study. Forced expiratory volume in 1 s (FEV1)% values of 18 patients (30.5%), forced vital capacity (FVC)% values of 27 patients (45.8%), and 6MWT of 13 patients (23.2%) were found lower than expected in the sixth month. On the SF‐36 scale, physical function, energy‐vitality, social functionality, pain, and general health parameters were found lower than normal. Minimal interstitial changes in chest CT were seen in 26 patients. Nine patients had lung area involvement between 10% and 50% of the surface, there was a correlation between FEV1% and FVC% values in this group. There was severe pulmonary fibrosis in four patients. There was a correlation between pulmonary function and physical function and general perception of health from SF‐36 scale subparameters.ConclusionFunctional and radiological abnormalities were detected in a significant number of patients in the sixth month after severe COVID‐19 pneumonia. A systematic monitoring plan must be established to assess and properly manage the long‐term problems that may arise.

Unique influences of pain frequency and pain-related worry on health-related quality of life in survivors of childhood cancer

Pain is common during childhood cancer treatment, can persist into survivorship, and is under-managed in young survivors of childhood cancer (SCCs). Pain may influence health-related quality of life in SCCs simply via its frequency, and/or by triggering worries about cancer recurrence. The purpose of this study was to explore proximal associations between pain frequency, pain-related worry, and health-related quality of life in SCCs. In this study, 111 SCCs (52% female, Mage: 17.67 years, range 8-25 years) were recruited from a Canadian Children's Hospital and completed self-report measures of pain frequency, pain-related worry, and health-related quality of life. Descriptive statistics, bivariate correlations, chi-square analyses and a hierarchical linear regression were performed. Pain was frequently experienced in SCCs (70% reported pain in previous month) and was commonly worried about as a sign of cancer recurrence (39% of sample endorsed some degree of worry). Those who endorsed worrying about pain were 95% more likely to endorse experiencing that symptom over the previous month, X2(1, N = 110) = 21.13, p

Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey

ObjectiveThis study aimed to measure the impact of COVID-19 on the quality of life (QoL) of survivors and their partners and family members.Design and settingA prospective cross-sectional global online survey...

The Skin-Sparing Debridement Technique in Necrotizing Soft-Tissue Infections: A Systematic Review

BackgroundSkin-sparing debridement (SSd) was introduced as an alternative to en bloc debridement (EBd) to decrease morbidity caused by scars in patients surviving Necrotizing soft-tissue infections (NSTI). An overview of potential advantages and disadvantages is needed. The aim of this review was to assess (1) whether SSd is noninferior to EBd regarding general outcomes, that is, mortality, length of stay (LOS), complications, and (2) if SSd does indeed result in decreased skin defects. MethodsA systematic literature search was performed according to the PRISMA guidelines. All human studies describing patients treated with SSd were included, when at least of evidence level consecutive case series. Studies describing up to 20 patients were pooled to improve readability and prevent overemphasis of findings from single small studies. ResultsTen studies, one cohort study and nine case series, all classified as poor based on Chambers criteria for case series, were included. Compared to patients treated with EBd, patients treated with SSd had no increased mortality rate, LOS or complication rate. SSd-treated patients had a high rate (75%) of total delayed primary closure (DPC) in the pooled case series. ConclusionThe current available evidence is of insufficient quality to conclude whether SSd is noninferior to EBd for all assessed outcomes. There are suggestions that SSd may result in a decreased need for skin transplants, which could potentially improve the (health related) quality of life in survivors. Experienced surgical teams could cautiously implement SSd under close monitoring, ideally with uniform outcome registry.

Managing a Pan-European Consortium on Late Effects among Long-Term Survivors of Childhood and Adolescent Cancer-The PanCareLIFE Project.

PanCareLIFE brought together European partners and is the largest study to have evaluated the issues of fertility impairment, hearing loss, and health-related quality of life in survivors of childhood and adolescent cancer. Successful delivery of the project aims did not evolve solely from scientific qualities. Organizational structure and careful information management were key components for its successful completion and are retrospectively assessed in this paper. PanCareLIFE used cohort studies, case-control studies, clinical evaluation of hearing, and genetic testing to study 32,000 survivors from 25 data providers. A management team implemented the organizational structures, was the decision making body, developed and maintained a communication plan, and supervised deadlines, and made timely decisions. A biostatistics support group and an ethical advisory board were established. A publication committee ensured quality and accuracy of publications and is jointly responsible for the sustainability of the project. The chosen management structure of PanCareLIFE can serve as a blueprint for the management of complex international projects. Apart from the survivors themselves, various target audiences like oncology researchers, health care providers, and policy makers can derive benefits from the project. The results can also be used in oncological frontline therapy to reduce toxicity.

Skeletal Muscle Changes, Function, and Health-Related Quality of Life in Survivors of Pediatric Critical Illness

To describe functional and skeletal muscle changes observed during pediatric critical illness and recovery and their association with health-related quality of life. Prospective cohort study. Single multidisciplinary PICU. Children with greater than or equal to 1 organ dysfunction, expected PICU stay greater than or equal to 48 hours, expected survival to discharge, and without progressive neuromuscular disease or malignancies were followed from admission to approximately 6.7 months postdischarge. None. Functional status was measured using the Functional Status Scale score and Pediatric Evaluation of Disability Inventory-Computer Adaptive Test. Patient and parental health-related quality of life were measured using the Pediatric Quality of Life Inventory and Short Form-36 questionnaires, respectively. Quadriceps muscle size, echogenicity, and fat thickness were measured using ultrasonography during PICU stay, at hospital discharge, and follow-up. Factors affecting change in muscle were explored. Associations between functional, muscle, and health-related quality of life changes were compared using regression analysis. Seventy-three survivors were recruited, of which 44 completed follow-ups. Functional impairment persisted in four of 44 (9.1%) at 6.7 months (interquartile range, 6-7.7 mo) after discharge. Muscle size decreased during PICU stay and was associated with inadequate energy intake (adjusted β, 0.15; 95% CI, 0.02-0.28; p = 0.030). No change in echogenicity or fat thickness was observed. Muscle growth postdischarge correlated with mobility function scores (adjusted β, 0.05; 95% CI, 0.01-0.09; p = 0.046). Improvements in mobility scores were associated with improved physical health-related quality of life at follow-up (adjusted β, 1.02; 95% CI, 0.23-1.81; p = 0.013). Child physical health-related quality of life at hospital discharge was associated with parental physical health-related quality of life (adjusted β, 0.09; 95% CI, 0.01-0.17; p = 0.027). Muscle decreased in critically ill children, which was associated with energy inadequacy and impaired muscle growth postdischarge. Muscle changes correlated with change in mobility, which was associated with child health-related quality of life. Mobility, child health-related quality of life, and parental health-related quality of life appeared to be interlinked.

Fear of cancer recurrence and quality of life among gynaecological cancer survivors under treatment

Fear of recurrence is one of the psychological problems that affects the quality of life for gynaecological cancer survivors. This study aims at analysing the relationship between fear of cancer recurrence and quality of life in survivors of gynaecological cancer during treatment. This study uses a descriptive correlation analysis approach with a cross-sectional design. The number of samples was 158 participants. Data were collected by using PSWQ and EORTC QoL-C30. The results show that the fear of cancer recurrence has a negative correlation with the quality of life of survivors of gynaecological cancer. It was shown that when their fear of cancer recurrence increases, their quality of life decreases. Fear of recurrence experienced by cancer survivors is closely related to their quality of life. Nurses have an important role in reducing fear of recurrence for cancer survivors through adequate information and education to prevent their fear of cancer recurrence.

Breast Cancer Surgery Experiences and Outcomes in Sex and Gender Minority Individuals: A Systematic Review

Abstract Purpose of the study: The purpose of this study was to summarize and critique contemporary research describing the experiences and outcomes of sex and gender minority (SGM) individuals with breast cancer surgery through systematic literature review. Methods: We performed a comprehensive search using keywords and subject headings to elicit studies that addressed experiences and outcomes of SGM breast cancer survivors in PubMed, Embase, CINAHL, PsycINFO, and LGBT Life. Studies were included if (1) participants were breast cancer survivors who identified as sexual and gender minority (SGM) women or transgender men; (2) one or more of the following were reported: experiences, preferences, or needs related to breast cancer care or surgical treatment decision-making, as well as interactions with healthcare providers and support persons; (3) they were published in English; and (4) they were published in the last 20 years. Covidence® was used to document the inclusion/exclusion process. Included studies were assessed using The Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. The authors performed thematic content analysis to identify emergent themes. Results: The search yielded 115 records, and seven studies were included in the final critical appraisal. All studies were qualitative with sample sizes ranging n=10–81, and quality scores ranged 6–8 out of 10. Studies were performed in the U.S. and Canada, and included sexual and gender diverse individuals. Major themes were identified: 1) surgical decision-making, 2) experiences of the post-surgical body, 3) information and support seeking, and 4) interactions with healthcare providers. Subthemes are explored, including body image vs. function, gender policing and politicizing of the body, and intersectionality. Conclusions: SGM breast cancer survivors have unique experiences of healthcare access, decision-making, and quality of life in survivorship. Researchers and clinicians must consider SGM breast cancer survivors' personal values and preferences for treatment, as well as their support network. Culturally sensitive healthcare provider interactions are critical for reducing health disparities in cancer care access and quality of life outcomes.