A Biobehavioral Perspective on Caring for Allogeneic Hematopoietic Stem Cell Transplant Survivors with Graft-Versus-Host Disease.

Among the potential complications of allogeneic hematopoietic stem cell transplantation (HSCT), graft-versus-host disease (GVHD) is common and associated with significant physical and psychosocial symptom burden. Despite substantial advances in GVHD treatment, the global immune suppression that frequently accompanies GVHD treatment also contributes to high rates of physical and emotional suffering and mortality. The complex manifestations of GVHD and its treatment warrant a multidisciplinary team-based approach to managing patients' multi-organ system comorbidities. A biobehavioral framework can enhance our understanding of the complex association between medications, physical symptoms, and psychosocial distress in patients with GVHD. Hence, for this perspective, we highlight the importance of addressing both the physical and psychosocial needs experienced by patients with GVHD and provide guidance on how to approach and manage those symptoms and concerns as part of comprehensive cancer care.

Quality of life of Retinoblastoma survivors in tertiary care eye hospital in South India.

PURPOSE: With the increased survival of retinoblastoma (RB) patients, it is important to evaluate the quality of life (QoL) of RB survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the QoL of survivors of RB, as perceived by parents and the self-report by patients, through a pediatric QoL (PEDs-QoL) questionnaire. METHODS: The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. PedsQL 4.0 generic core scale and structured interview were administered. QoL in physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters. RESULTS: The mean age of the RB survivors was 5.7 years with an M:F ratio of 1.1:1. Disease was bilateral in 79% of cases. About 45% (39/86) underwent enucleation, while others received combination therapy (16; 18%), chemotherapy (30; 34%), and radiation (1; 1%). As reported by parents, the QoL of physical health domain of RB survivors was 70.2 SD ± 27.8 and 96.15 ± 13 SD, emotional health was 72.1 ± 27.4 SD and 94.4 ± 12.5 SD, social health was 80.4 ± 24.9 SD and 98.6 ± 6.2 SD; and school health was 71.9 ± 2 6.5 SD and 96.1 ± 12.2 SD. As per the self-report perception, the QoL of physical health was 68.2 ± 27.8 SD and 96.2 ± 13 SD, emotional health was 66.2 ± 28.4 SD and 95.3 ± 12.5 SD, social health was 69.5 ± 24.9 SD and 98.7 ± 6.2 SD, and school health was 63.5 ± 26.5 SD and 95.1 ± 12.2 SD. There was a significant relationship between enucleation and QoL domains, where χ2 = 67.75, degrees of freedom (df) = 36, and P < 0.01. There was a significant association between vision in the better eye (6/18 or better = 8, 6/18-6/60 = 8, 3/60 or worse = 42) and QoL scores (χ2 = 95.36, df = 62, P < 0.01). There was a substantial association between socioeconomic status and QoL domains, where χ2= 88.5, df = 56, P < 0.01. CONCLUSION: The results of the study showed that the QoL of parents of RB survivors and self-proxy reports were negatively affected in many ways, including physical, social, emotional, and school-related dimensions. Despite the small differences, self-proxy reports indicated a lower QoL than the parents' group. The study findings indicate that there are notable correlations between enucleation and visual acuity less than 6/18, as well as socioeconomic status, with various aspects of QoL domains among individuals who have survived RB.

HPV self-collection for cervical cancer screening among survivors of sexual trauma: a qualitative study.

Intimate partner violence affects 20-30% of women in the United States. Disparities in routine cervical cancer surveillance have been demonstrated in certain populations, including victims of intimate partner violence (IPV). This study examined and assessed the acceptability of high-risk HPV (hrHPV) self-collection among individuals who have experienced IPV. We conducted an observational study using qualitative data collection and analysis. We interviewed individuals with a history of IPV and who currently reside in Oregon. This study identified key themes describing knowledge and attitudes towards cervical cancer screening for individuals who have experienced IPV. They include: guideline knowledge, prior office-based cervical cancer screening experience, barriers to cervical cancer screening, at-home hrHPV self-collection experience, and testing confidence. Participants experienced fewer barriers and expressed increased comfort and control with hrHPV self-collection process. Individuals with a history of IPV have lower rates of cervical cancer screening adherence and higher rates of cervical dysplasia and cancer than other populations. The patient-centered approach of hrHPV self-collection for cervical cancer screening can reduce barriers related to the pelvic exam and empower patients to reduce their risks of developing cervical cancer by enabling greater control of the testing process.

Prostate Cancer Knowledge, Beliefs and Screening Uptake among Black Survivors: A Qualitative Exploration at a Tertiary Hospital, Limpopo Province, South Africa.

Men of African ancestry suffer disproportionately from prostate cancer (PCa) compared to other racial groups in South Africa. Equally concerning is that black South African men generally present later and with higher stages and grades of the disease than their non-black counterparts. Despite this, a small percentage of black South African men participate in screening practices for PCa. This study sought to explore knowledge and beliefs of black South African PCa survivors, and the potential impact of this on the limited screening uptake within this population group. A hermeneutic phenomenological study design was undertaken. The sample comprised 20 black South African PCa survivors, between the ages of 67 and 85 years (meanage = 76 yrs; SD = 5.3), receiving some form of treatment at a tertiary Academic Hospital, Limpopo Province, South Africa. The sample was selected through a purposive sampling method. Data for the study were collected through in-depth, semi-structured individual interviews and analyzed through interpretative phenomenological analysis (IPA). The findings demonstrated that black South African men had poor knowledge of PCa and that this may create an unfortunate system that precludes this population group from taking part in life-saving PCa screening services. The results highlight a need to elevate knowledge and awareness of PCa among black South African men and ultimately enhance screening practices.

Survivor to thriver: identifying and overcoming the psychological effects of a stoma.

Stoma-forming surgery can have extensive, negative impacts on a patient's psychological wellbeing. Although this has been known for several decades, little progress has been made in addressing the issue. Several areas of concern have been repeatedly identified in the literature: loss of control; reduced self-esteem; psychosexual issues; and the impact of enhanced recovery on psychological outcomes. While these issues have the potential to significantly affect patients undergoing stoma-forming surgery, they can be mitigated against. While identifying and addressing psychological morbidity at an early stage is the most effective approach, additional interventions can also be useful. The promotion of self-care and independence can minimise the feeling of loss of control, the selection of discreet, leak-proof products can help address self-esteem issues, and open, honest conversation can significantly improve a patient's feelings regarding sexuality and intimacy.

Preventing retraumatisation in torture survivors during surgical care: results of a guideline-development project and qualitative study exploring healthcare providers' experiences.

OBJECTIVES: Insufficient training and the absence of guidelines increase the risk of retraumatisation in torture survivors during surgical procedures. This study aims to develop guidelines to mitigate this risk and gather healthcare professionals' experiences treating torture survivors and insights on the guideline's feasibility and acceptability. DESIGN: The study was conducted in two phases. Phase 'a' involved developing guidelines based on reviews of torture survivors' encounters in somatic care and potential retraumatisation triggers, as well as a qualitative study on survivors' experiences during surgical interventions. The development process adhered to the Grading of Recommendations Assessment, Development and Evaluation (GRADE) principles and the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument for methodological rigour. Phase 'b' involved focus groups and individual interviews with healthcare professionals to explore challenges in caring for torture survivors and to evaluate the guidelines. SETTING: The study, conducted from May to August 2023, involved participants from surgical departments in three hospitals in southern and southeastern Norway. PARTICIPANTS: Twenty-one healthcare professionals, including surgeons, anaesthesiologists, nurses and a dentist, participated in the study. Both focus group interviews and individual interviews were conducted. RESULTS: Phase 'a': guidelines comprising six sections were developed: an introduction, general guidelines and four sections covering the preoperative, perioperative and postoperative surgical stages. Phase 'b': healthcare professionals struggled to understand torture's complexities and identify survivors' unique needs. They faced challenges using interpreters and assisting patients with strong reactions. While the guidelines were viewed as practical and useful for raising awareness, their length was questioned. CONCLUSIONS: We provide recommendations for preventing retraumatisation in torture survivors undergoing surgical treatment. The guidelines may serve as a starting point for offering safe and individualised care to torture survivors. Teaching institutions and hospitals may incorporate the guidelines into healthcare professionals' education.

Psychosocial Factors Associated With Long-Term Cognitive Impairment Among COVID-19 Survivors: A Cross-Sectional Study.

ABSTRACT: COVID-19 survivors complained of the experience of cognitive impairments, which also called "brain fog" even recovered. The study aimed to describe long-term cognitive change and determine psychosocial factors in COVID-19 survivors. A cross-sectional study was recruited 285 participants from February 2020 to April 2020 in 17 hospitals in Sichuan Province. Cognitive function, variables indicative of the virus infection itself, and psychosocial variables were collected by telephone interview. Univariate logistic regression and Lasso logistic regression models were used for variable selection which plugged into a multiple logistics model. Overall prevalence of moderate or severe cognitive impairment was 6.3%. Logistic regression showed that sex, religion, smoking status, occupation, self-perceived severity of illness, sleep quality, perceived mental distress after COVID-19, perceived discrimination from relatives and friends, and suffered abuse were associated with cognitive impairment. The long-term consequences of cognitive function are related to multiple domains, in which psychosocial factors should be taken into consideration.

Risks of developing major psychiatric disorders among child and adolescent intensive care unit survivors.

BACKGROUND: The mental health of child and adolescent intensive care unit (ICU) survivors is increasingly being researched. However, the literature on how various types of critical illness influence specific psychiatric disorders remains limited. METHODS: This study analyzed the data of 8704 child and adolescent ICU survivors and 87,040 age-, sex-, family income-, and residence-matched controls who were followed from enrollment to the end of 2013; the data covered the period from 1996 to 2013 and were extracted from a nationwide data set. The primary outcomes were the risks of five major psychiatric disorders (MPDs), namely schizophrenia, bipolar disorder (BD), major depressive disorder (MDD), obsessive compulsive disorder (OCD), and posttraumatic stress disorder (PTSD). RESULTS: Relative to the controls, the child and adolescent ICU survivors (mean age = 10.33 years) exhibited higher risks of developing five MPDs. The associated hazard ratios (HRs) and confidence intervals (CIs) are as follows: PTSD, HR = 4.67, 95 % CI = 2.42-9.01; schizophrenia, HR = 3.19, 95 % CI = 2.27-4.47; BD, HR = 2.02, 95 % CI = 1.33-3.05; OCD, HR = 1.96, 95 % CI = 1.21-3.16; and MDD, HR = 1.68, 95 % CI = 1.44-1.95. The risks of developing MPDs varied across multiple types of critical illness related to ICU admission. CONCLUSIONS: The risks of MPDs were significantly higher among the child and adolescent ICU survivors than among the controls. The development of appropriate MPD prevention strategies should be emphasized for this vulnerable population.

Longitudinal associations between post-traumatic stress and post-traumatic growth among older adults 11 years after a disaster.

AIMS: Previous studies have reported inconsistent findings regarding the association between post-traumatic stress (PTS) and post-traumatic growth (PTG). Three major issues could account for this inconsistency: (1) the lack of information about mental health problems before the disaster, (2) the concept of PTG is still under scrutiny for potentially being an illusionary perception of personal growth and (3) the overlooking of PTS comorbidities as time-dependent confounding factors. To address these issues, we explored the associations of PTS and PTG with trauma-related diseases and examined the association between PTS and PTG using marginal structural models to address time-dependent confounding, considering pre-disaster covariates, among older survivors of the 2011 Japan Earthquake and Tsunami. METHODS: Seven months before the disaster, the baseline survey was implemented to ask older adults about their health in a city located 80 km west of the epicentre. After the disaster, we implemented follow-up surveys approximately every 3 years to collect information about PTS and comorbidities (depressive symptoms, smoking and drinking). We asked respondents about their PTG in the 2022 survey (n = 1,489 in the five-wave panel data). RESULTS: PTG was protectively associated with functional disability (coefficient -0.47, 95% confidence interval (CI) -0.82, -0.12, P < 0.01) and cognitive decline assessed by trained investigators (coefficient -0.07, 95% CI -0.11, -0.03, P < 0.01) and physicians (coefficient -0.06, 95% CI -0.11, -0.02, P < 0.01), while PTS was not significantly associated with them. Severely affected PTS (binary variable) was associated with higher PTG scores, even after adjusting for depressive symptoms, smoking and drinking as time-dependent confounders (coefficient 0.35, 95% CI 0.24, 0.46, P < 0.01). We also found that an ordinal variable of the PTS score had an inverse U-shaped association with PTG. CONCLUSION: PTG and PTS were differentially associated with functional and cognitive disabilities. Thus, PTG might not simply be a cognitive bias among survivors with severe PTS. The results also indicated that the number of symptoms in PTS had an inverse U-shaped association with PTG. Our findings provided robust support for the theory of PTG, suggesting that moderate levels of psychological struggles (i.e., PTS) are essential for achieving PTG, whereas intense PTS may hinder the attainment of PTG. From a clinical perspective, interventions that encourage social support could be beneficial in achieving PTG by facilitating deliberate rumination.

A Positive Psychology Intervention in Allogeneic Hematopoietic Stem Cell Transplantation Survivors (PATH): A Pilot Randomized Clinical Trial.

BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HSCT) survivors experience significant psychological distress and low levels of positive psychological well-being, which can undermine patient-reported outcomes (PROs), such as quality of life (QoL). Hence, we conducted a pilot randomized clinical trial to assess the feasibility and preliminary efficacy of a telephone-delivered positive psychology intervention (Positive Affect for the Transplantation of Hematopoietic stem cells intervention [PATH]) for improving well-being in HSCT survivors. METHODS: HSCT survivors who were 100 days post-HSCT for hematologic malignancy at an academic institution were randomly assigned to either PATH or usual care. PATH, delivered by a behavioral health expert, entailed 9 weekly phone sessions on gratitude, personal strengths, and meaning. We defined feasibility a priori as >60% of eligible participants enrolling in the study and >75% of PATH participants completing ≥6 of 9 sessions. At baseline and 9 and 18 weeks, patients self-reported gratitude, positive affect, life satisfaction, optimism, anxiety, depression, posttraumatic stress disorder (PTSD), QoL, physical function, and fatigue. We used repeated measures regression models and estimates of effect size (Cohen's d) to explore the preliminary effects of PATH on outcomes. RESULTS: We enrolled 68.6% (72/105) of eligible patients (mean age, 57 years; 50% female). Of those randomized to PATH, 91% completed all sessions and reported positive psychology exercises as easy to complete and subjectively useful. Compared with usual care, PATH participants reported greater improvements in gratitude (ß = 1.38; d = 0.32), anxiety (ß = -1.43; d = -0.40), and physical function (ß = 2.15; d = 0.23) at 9 weeks and gratitude (ß = 0.97; d = 0.22), positive affect (ß = 2.02; d = 0.27), life satisfaction (ß = 1.82; d = 0.24), optimism (ß = 2.70; d = 0.49), anxiety (ß = -1.62; d = -0.46), depression (ß = -1.04; d = -0.33), PTSD (ß = -2.50; d = -0.29), QoL (ß = 7.70; d = 0.41), physical function (ß = 5.21; d = 0.56), and fatigue (ß = -2.54; d = -0.33) at 18 weeks. CONCLUSIONS: PATH is feasible, with promising signals for improving psychological well-being, QoL, physical function, and fatigue in HSCT survivors. Future multisite trials that investigate PATH's efficacy are needed to establish its effects on PROs in this population.

Potential risk factors for reduced quality of life and increased health care utilization in ARDS survivors: results from the multicenter cohort study DACAPO.

AIM: To analyze the association of individual pre-ICU risk factors (obesity, physical and mental comorbidity, smoking status) on the long-term recovery process in survivors of the acute respiratory distress syndrome (ARDS; outcomes: health related quality of life, health care utilization; measured at 12, 24, and 36 months after ICU discharge). FINDINGS: Results show a possible causal link between pre-ICU risk factors and subsequent recovery of survivors of ARDS, especially with regard to mental health related quality of life. PURPOSE: Identifying relevant pre-existing risk factors, such as mental health problems, will enable the identification of at-risk patients, thus aiding in the improvement of long-term healthcare for survivors of critical illness.

"I am a survivor!": Violently Injured Black Men's Perceptions of Labeling After a Violent Firearm Injury.

Self-appraisal after a life-altering event is a critical process for individuals, often comprised by assigned labels that may not align with an individuals' perceptions of themselves or of their situation. Existing research within this victim-survivor dichotomy largely rests in the interpersonal violence space, with a victim assuming legal recourse and wrongdoing, and a survivor associating with positive personal characteristics like grit and resilience. Much existing literature on self-appraisal after interpersonal injury is heavily concentrated within the sexual violence literature, and this study applies these concepts to a sample of Black men injured by firearms. Ten Black men enrolled in a hospital-based violence intervention program (HVIP) were interviewed to understand how they label their experience of firearm injury, and if their perceptions aligned with common labels seen among other populations and/or in other areas of study (e.g., cancer, domestic violence). Each participant assigned themselves their own label, with three labels emerging: survivor, victim and survivor, and neither victim nor survivor. The results illustrate the nuance of experiences beyond the victim-survivor dichotomy, and how labels and personal identities may shift following injury into new terms and considerations of resilience and trauma processing. More research is warranted to understand the factors that shape self-labeling within this population, including influences of masculine norms, racialized stereotypes, community context, and availability of services. Findings support public awareness campaigns to reframe surviving violence as a strength, and for community partners and practitioners to increase access to culturally competent and trauma-informed mental healthcare.

Beyond surviving: A scoping review of collaborative care models to inform the future of postdischarge trauma care.

ABSTRACT: Trauma centers demonstrate an impressive ability to save lives, as reflected by inpatient survival rates of more than 95% in the United States. Nevertheless, we fail to allocate sufficient effort and resources to ensure that survivors and their families receive the necessary care and support after leaving the trauma center. The objective of this scoping review is to systematically map the research on collaborative care models that have been put forward to improve trauma survivorship. Of 833 articles screened, we included 16 studies evaluating eight collaborative care programs, predominantly in the United States. The majority of the programs offered care coordination and averaged 9 months in duration. Three fourths of the programs incorporated a mental health provider within their primary team. Observed outcomes were diverse: some models showed increased engagement (e.g., Center for Trauma Survivorship, trauma quality-of-life follow-up clinic), while others presented mixed mental health outcomes and varied results on pain and health care utilization. The findings of this study indicate that collaborative interventions may be effective in mental health screening, posttraumatic stress disorder and depression management, effective referrals, and improving patient satisfaction with care. A consensus on core elements and cost-effectiveness of collaborative care models is necessary to set the standard for comprehensive care in posttrauma recovery.

Association Between Lifestyle Behaviors and Obesity Among Stroke Survivors.

AIM: The aim was to investigate factors influencing obesity among stroke survivors based on demographics and lifestyle behaviors. BACKGROUND: Stroke survivors are more likely to experience stroke recurrence within a few years. As obesity is a traditional risk factor for stroke, obesity should be managed in stroke survivors to prevent stroke recurrence. METHODS: A cross-sectional secondary data analysis analyzed data from the 2017 United States Behavioral Risk Factor Surveillance System (BRFSS) survey. Demographics, frequency of vegetable and fruit intake, smoking, alcohol use, physical activity, and sleep were examined. RESULTS: Among 1032 stroke survivors, 57.8% were obese. Advanced age, female sex, veteran status, at least once-daily fruit intake, current smoking, and lack of physical activity were associated with obesity. CONCLUSION: Stroke survivors should be encouraged to pursue healthy behaviors to manage obesity. Appropriate transitional care, including diet education and tailored exercise, can be an effective strategy.

Gender differences in relation to stigmatization and depressive symptoms after burns.

OBJECTIVES: The aim of this study was to investigate the moderating role of gender in the relationship between burn severity, perceived stigmatization and depressive symptoms at multiple time points postburn. MATERIALS AND METHODS: This multi-center study included data from two cohorts. Cohort 1 consisted of 215 burn survivors, participating in a longitudinal study with measures at 3 and 12 months postburn. Cohort 2 consisted of 180 burn survivors cross-sectionally assessed at 5 - 7 years postburn. Both cohorts completed self-reported measures of perceived stigmatization and depressive symptoms. The number of acute surgeries (i.e., no surgery, 1 surgery or 2 or more surgeries) was used as indicator of burn severity. Relations between number of surgeries, depressive symptoms, and perceived stigmatization, including possible indirect effects, were evaluated with gender-specific path models. RESULTS: In both men and women, number of surgical operations was related to higher levels of depressive symptoms and perceived stigmatization at 3 months after burn. In women, number of operations was still directly related to both constructs at 12 months after burn, which was cross-sectionally confirmed in the 5-7 years after burn cohort. In men, from 3 to 12 months after burn, depressive symptoms and perceived stigmatization were bidirectionally related, and, through these effects, number of surgeries was indirectly related to both outcomes. In the cross-sectional 5-7 years after burn cohort, number of operations was related to stigma but not to depressive symptoms of men. CONCLUSION: Number of operations had a different effect on psychosocial adaptation of male and female burn survivors. In women, a persistent direct link from number of operations to both depressive symptoms and perceived stigmatization was found over time. In men, the effect of number of operations was most evident in the short-term, after which perceived stigmatization and depressive symptoms became interrelated. This indicates that burn severity remains a factor of significance in psychological adjustment in women, whereas in men, this significance seems to decrease over time.

Functional quality of life among newly diagnosed young adult colorectal cancer survivors compared to older adults: results from the ColoCare Study.

PURPOSE: Colorectal cancer (CRC) incidence and mortality are increasing among young adults (YAs) aged 18-39. This study compared quality of life (QOL) between YA and older adult CRC survivors in the ColoCare Study. METHODS: Participants were grouped by age (years) as follows: 18-39 (YA), 40-49, 50-64, and 65 + . Functional QOL (physical, social, role, emotional, cognitive) and global QOL were assessed with the EORTC-QLQ-C30 at enrollment, 3, 6, and 12 months. Average scores were compared between groups over time using longitudinal mixed-effect modeling. Proportions with clinically meaningful QOL impairment were calculated using age-relevant thresholds and compared between groups over time using logistic regression with mixed effects. RESULTS: Participants (N = 1590) were n = 81 YAs, n = 196 aged 40-49, n = 627 aged 50-64, and n = 686 aged 65 + . Average physical function was better among YAs than participants aged 50-64 (p = 0.010) and 65 + (p < 0.001), and average social function was worse among YAs than aged 65 + (p = 0.046). Relative to YAs, all age groups were less likely to report clinically meaningful social dysfunction (aged 40-49 OR = 0.13, 95%CI = 0.06-0.29; aged 50-64 OR = 0.10, 95%CI = 0.05-0.21; aged 65 + OR = 0.07, 95%CI = 0.04-0.15) and role dysfunction (aged 40-49 OR = 0.36, 95%CI = 0.18-0.75; aged 50-64 OR = 0.41, 95%CI = 0.22-0.78; aged 65 + OR = 0.32, 95%CI = 0.17-0.61). Participants aged 40-49 were also less likely to report physical dysfunction (OR = 0.42, 95%CI = 0.19-0.93). CONCLUSION: YA CRC survivors reported better physical and worse social function compared to older CRC survivors, and YA CRC survivors were more likely to report clinically meaningful social, role, and physical disfunction. Future work should further investigate QOL using age-relevant benchmarks to inform best practices for CRC survivorship care. TRIAL REGISTRATION: NCT02328677, registered December 2014.

After an Earthquake: The Comparison of Psychological Status of Resident and Earthquake Survivor Cancer Patients.

OBJECTIVE: Natural disasters such as earthquakes can have a significant impact on cancer treatment and care. The objective of the study was to evaluate the psychological effect of the earthquake on survivor cancer patients compared to regular cancer patients. METHODS: Cancer patients who were evacuated from earthquake sites and referred for the continuation of their treatment, as well as regular resident patients were included in the study. The resident cancer patients were compared with the study population as a control group. DASS-21 forms were filled based on patients' declarations. RESULTS: Forty-six patients were earthquake survivors and 55 were resident cancer patients. Stress scores were significantly higher in earthquake survivors (P = 0.021). In contrast, there was no difference in stratified groups due to DASS-21 categorization in stress scores while depression and anxiety subgroups had significant differences (P = 0.012; P < 0.001). Also, women significantly had a worse outcome in the depression and anxiety categories (P = 0.028; P = 0.021) while no difference was observed in men. CONCLUSION: Recent earthquakes in Turkey had psychological negative effects on oncology patients. The increased stress, depression, and anxiety levels were observed in earthquake survivors who were evacuated from the disaster zone and compared to the control group.

Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver.

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.

Neuropsychological task outcomes among survivors of childhood acute lymphoblastic leukemia in Malaysia.

This study intended to explore the neuropsychological ramifications in childhood acute lymphoblastic leukemia (ALL) survivors in Malaysia and to examine treatment-related sequelae. A case-control study was conducted over a 2-year period. Seventy-one survivors of childhood ALL who had completed treatment for a minimum of 1 year and were in remission, and 71 healthy volunteers were enlisted. To assess alertness (processing speed) and essential executive functioning skills such as working memory capacity, inhibition, cognitive flexibility, and sustained attention, seven measures from the Amsterdam Neuropsychological Tasks (ANT) program were chosen. Main outcome measures were speed, stability and accuracy of responses. Mean age at diagnosis was 4.50 years (SD ± 2.40) while mean age at study entry was 12.18 years (SD ± 3.14). Survivors of childhood ALL underperformed on 6 out of 7 ANT tasks, indicating poorer sustained attention, working memory capacity, executive visuomotor control, and cognitive flexibility. Duration of treatment, age at diagnosis, gender, and cumulative doses of chemotherapy were not found to correlate with any of the neuropsychological outcome measures. Childhood ALL survivors in our center demonstrated significantly poorer neuropsychological status compared to healthy controls.