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Background Chronic graft-versus-host disease (cGvHD) is one of the most common life-threatening complications following allogeneic haematopoietic stem cell transplantation (alloHSCT). Understanding outcome after alloHSCT requires a full evaluation of the patient’s health status, including cGvHD and patient reported outcomes (PROs). In an effort to better understand practice patterns across European countries, a survey was initiated by the Integrated European Network on cGvHD (an EU-funded COST Action CA17138 EUROGRAFT, www.gvhd.eu) and the Transplant Complications Working Party of the European Society for Blood and Marrow Transplantation (EBMT). This report shares results of the survey, offering a snapshot view of current practice patterns in the context of long-term care of cGvHD patients. Methods Our self-designed 38-item online survey (Supplementary Material) was intended to collect data regarding transplant center characteristics, data registration practices, the use of NIH criteria in clinical routine, biopsies/biomarkers for clinical assessment, cGvHD cell-based therapies, and PROs. The survey used computer adapted testing methods and took ~10 min to complete. All centers participating in the COST Action EUROGRAFT and all EBMT centers performing alloHSCT were invited by email for participation in the survey. Data were collected between July 2019 and July 2020. Appropriate descriptive statistics were used. In case of multiple entries for a single center (n = 4), only the entry from the most senior staff member was included for the analysis. Missing data was reported as such. Findings Center characteristics Survey results are summarized in Table 1. A total of 72 centers out of 424 invited centers from 24 countries responded to the survey, representing ~17% of all alloHSCT centers and 19.6% of all transplanted patients within the EBMT network [1]. The majority of participating alloHSCT centers were from Europe with exception of three centers based in Asia and one in Latin America. Survey responses were mainly submitted by physicians and data managers. Of note, the size of the transplant programs differed between responding (mean ± SD, n = 47 ± 40 transplants/year) vs. non-responding (mean ± SD, n = 39 ± 31 transplants/year) centers (Supplementary Material).

Hematopoietic cell transplantation (HCT) is a potentially curative treatment for children and adults with malignant and nonmalignant diseases. Despite increasing survival rates, long-term morbidity after HCT is substantial. Neurocognitive dysfunction is a serious cause of morbidity, yet little is known about neurocognitive dysfunction after HCT. To address this gap, collaborative efforts of the Center for International Blood and Marrow Transplant Research and the European Society for Blood and Marrow Transplantation undertook an expert review of neurocognitive dysfunction after HCT. In this review we define what constitutes neurocognitive dysfunction, characterize its risk factors and sequelae, describe tools and methods to assess neurocognitive function in HCT recipients, and discuss possible interventions for HCT patients with this condition. This review aims to help clinicians understand the scope of this health-related problem, highlight its impact on well-being of survivors, and help determine factors that may improve identification of patients at risk for declines in cognitive functioning after HCT. In particular, we review strategies for preventing and treating neurocognitive dysfunction in HCT patients. Finally, we highlight the need for well-designed studies to develop and test interventions aimed at preventing and improving neurocognitive dysfunction and its sequelae after HCT.

Hematopoietic cell transplantation (HCT) is a potentially curative treatment for children and adults with malignant and non-malignant diseases. Despite increasing survival rates, long-term morbidity following HCT is substantial. Neurocognitive dysfunction is a serious cause of morbidity, yet little is known about neurocognitive dysfunction following HCT. To address this gap, collaborative efforts of the Center for International Blood and Marrow Transplant Research and the European Society for Blood and Marrow Transplantation undertook an expert review of neurocognitive dysfunction following HCT. In this review, we define what constitutes neurocognitive dysfunction, characterize its risk factors and sequelae, describe tools and methods to assess neurocognitive function in HCT recipients, and discuss possible interventions for HCT patients with this condition. This review aims to help clinicians understand the scope of this health-related problem, highlight its impact on well-being of survivors, and to help determine factors that may improve identification of patients at risk for declines in cognitive functioning after HCT. In particular, we review strategies for preventing and treating neurocognitive dysfunction in HCT patients. Lastly, we highlight the need for well-designed studies to develop and test interventions aimed at preventing and improving neurocognitive dysfunction and its sequelae following HCT.

In this prospective multicenter study, we investigated the course of depression and anxiety during hematopoietic stem cell transplantation (HSCT) until 5 years after transplantation adjusting for medical information. Patients were consulted before HSCT (n=239), at 3 months (n=150), 12 months (n=102) and 5 years (n=45) after HSCT. Depression and anxiety were assessed with the Hospital Anxiety and Depression Scale (HADS). Detailed medical and demographic information was collected. Prevalence rates were compared with an age- and gender-matched control group drawn from a large representative sample (n=4110). The risk of depression before HSCT was lower for patients than for the control group (risk ratio (RR), 0.56; 95% confidence interval (CI), 0.39/0.81). Prevalence rates of depression increased from 12 to 30% until 5 years post HSCT. Anxiety rates were most frequently increased before HSCT (29%, RR, 1.31; 95% CI, 1.02/1.68) and then reached a stable level comparable to the background population (RR 0.83, 95% CI, 0.56/1.22). This study confirms the low levels of depression in the short term after HSCT and identifies depression as a long-term effect. Furthermore, it confirms previous results of heightened anxiety before HSCT. Surveillance of symptoms of anxiety during the short-term phase of HSCT and of depression during the following years is crucial.

Background In this prospective multicenter study, we investigated cancer-and-treatment–specific distress (CTXD) and its impact on symptoms of posttraumatic stress disorder (PTSD) in patients undergoing allogeneic hematopoietic stem cell transplantation (HSCT). Methods Patients were consulted before (T0, N = 239), 3 (T1, N = 150), and 12 months (T2, N = 102) after HSCT. Medical (eg, diagnosis and pretreatment) and demographic information, CTXD and PTSD (PCL-C) were assessed. Results Random intercept models revealed that the sum score of CTXD was highest pre-HSCT (T0), decreased by T1 (γ = −.18, 95% CI [−.26/−.09]), and by T2 (γ = −.10, 95% CI [−.20/−.00]). Uncertainty, family strain, and health burden were rated most distressing during HSCT. Uncertainty and family strain decreased from T0 to T1 (γ = −.30, 95% CI [−.42/−.17]; γ = −.10, 95% CI [−.20/−.00]) and health burden from T1 to T2 (γ = −.21, 95% CI [−.36/.05]). Women were more likely to report uncertainty (γ = .38, 95% CI [.19/.58]), family strain (γ = .38, 95% CI [.19/.58]), and concerns regarding appearance and sexuality (γ = .31, 95% CI [.14/.47]) than men. Uncertainty (γ = .18, 95% CI [.12/.24]), appearance and sexuality (γ = .09, 95% CI [.01/.16]), and health burden (γ = .21, 95% CI [.14/.27]) emerged as predictors of PTSD symptomatology across the 3 assessment points. Conclusions Our data provide first evidence regarding the course of 6 dimensions of CTXD during HSCT and their impact on PTSD symptomatology. Specifically, results emphasize the major burden of uncertainty pre-HSCT and the impact of uncertainty and concerns regarding appearance and sexuality on PTSD symptomatology.

Despite the life-threatening character of allogeneic hematopoietic stem cell transplantation (allogeneic HSCT), very few longitudinal research exists on posttraumatic stress disorder (PTSD) symptomatology in this patient group. We investigated prevalence, temporal course and predictors of PTSD symptomatology in this population. Patients were assessed before conditioning (T0), 100 days (T1), and 12 months after HSCT (T2). PTSD symptomatology was measured with the PTSD Checklist—Civilian Version. We conducted multilevel modeling and multiple regression analyses. Two hundred thirty-nine patients participated at baseline, 150 at T1, and 102 at T2. Up to 15 % met the criteria for PTSD at least once during the course of assessment. Fifty-two percent showed diagnostic relevant levels of intrusion, 30 % of avoidance, and 33 % of arousal at least once. Apart from arousal, which increased between T0 and T1 (γ = 0.56, p = 0.03), no other severity score significantly differed between time points. Being impaired by pain (γ = 2.89, p

Hintergrund Neuropsychologische Folgen einer Krebserkrankung und -behandlung sind in den letzten Dekaden zunehmend in den Blickpunkt der Forschung geruckt. Neuropsychologische Beeintrachtigungen wirken sich auf die Funktionsfahigkeit und Teilhabe aus und konnen einer erfolgreichen Reintegration in Alltag und Beruf entgegenwirken. Bei Patienten mit hamatopoetischer Stammzelltransplantation (HSZT) wurde diese Folgestorung bisher vergleichsweise selten untersucht.

Ziel der Studie: Zielsetzung ist die psychometrische Uberprufung der deutschen Version der Utrecht Work Engagement Scale-9 (UWES-9), einem 9-Item langen Selbstbeurteilungsinstrument zur Erfassung von Arbeitsengagement. Methodik: Auf Grundlage einer Stichprobe von 179 Patienten mit hamatologischen Malignomen in akutstationarer oder rehabilitativer Behandlung wurde die dimensionale Struktur der UWES-9 konfirmatorisch und exploratorisch analysiert und bezuglich Reliabilitat, Itemkennwerten sowie Konstruktvaliditat uberpruft. Ergebnisse: Die konfirmatorische Faktorenanalyse der UWES-9 ergibt akzeptable Modell-Fit-Indizes sowohl fur die 1-dimensionale als auch die 3-dimensionale Faktorlosung. Die explorative Hauptkomponentenanalyse konnte die 1-dimensionale Faktorenstruktur replizieren, die 67% der Varianz aufklart und sich durch eine sehr hohe interne Konsistenz (α=0,94) und hohe Faktorladungen (0,73–0,88) auszeichnet. Die Konstruktvaliditat wird unterstutzt durch signifikante und positive Korrelationen u. a. mit Bedeutung und Verbundenheit mit der Arbeit, Gemeinschaftsgefuhl und allgemeiner Arbeitszufriedenheit. Fazit: Die deutschsprachige UWES-9 weist eine gute psychometrische Qualitat in der 1-dimensionalen Erfassung von beruflichem Engagement bei Patienten mit hamatologischen Malignomen in einem akutstationaren sowie stationar-rehabilitativen Setting auf.

Context Due to toxicity and invasiveness, allogeneic hematopoietic stem cell transplantation causes severe and longstanding symptom burden. Longitudinal studies on symptoms and symptom clusters (SC) would be helpful to optimize symptom control but are rare to date. Objectives The objective of this study was to investigate stability of symptoms, extract time stable SC, and determine their priority in symptom management. Methods In this multicenter study, patients diagnosed with hematologic cancer were assessed before conditioning (T0) and three months (T1), one year (T2), and five years (T3) after transplantation. Symptoms were assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30). Symptoms were stable when rated as present at three consecutive time points. Applying factor analysis, stable SC were composed of symptoms loading on the same factor across all time points. Priority in symptom management was derived from a combination of severity and predictive power for quality of life (QoL). Results Two hundred thirty-nine patients participated at T0, 150 (63%) at T1, 102 (43%) at T2, and 45 (19%) at T3. We identified three stable SC, composed of rest-tired-weak-dyspnea-loss of appetite (exhausted), tense-worried-irritable-depressed (affective), and nausea-vomiting (gastrointestinal). Fatigue was most persistent and also most severe and predictive for QoL, both as symptom and in cluster (exhausted). Conclusion Given its high stability, severity, and impact on QoL, fatigue should have priority in symptom management. The treatment of this symptom could be enhanced by also incorporating interventions addressing dyspnea and loss of appetite.

We examined the course and the prevalence of a high fear of cancer recurrence (FCR) in patients undergoing allogeneic PBSC transplantation (hematopoietic SCT (HSCT)) before HSCT (N=239), 100 days after (n=150, and 12 months after allogeneic HSCT (n=102). The Fear of Progression Questionnaire-Short Form (FoP-Q-SF), the EORTC Quality of Life Questionnaire, and the Hospital Anxiety and Depression Scale were used. Pre-HSCT 36% of patients, 100 days after HSCT 24% of patients, and 1 year after HSCT 23% of patients fulfilled the criteria for high FCR (FoP-Q-SF cutoff=34). Being married (b=2.76, P=0.026), female gender (b=4.45, P

Neurofibromatose Typ 1 (NF1) ist eine seltene, chronische, autosomal dominant vererbte Erkrankung, die vor allem zu gutartigem Tumorwachstum der Haut fuhrt und das Nervensystem betrifft. Es handelt sich um ein komplexes Krankheitsbild, das vielfaltige Symptome in unterschiedlicher Auspragung aufweist. Die vorliegende Arbeit untersucht die psychische Belastung von 129 Erwachsenen mit NF1. Es zeigte sich, dass die NF1-Patienten im Vergleich zur Allgemeinbevolkerung hoher psychisch belastet sind und dass die psychische Belastung uber einen Zeitraum von einem Jahr stabil bleibt. Die Ergebnisse weisen auf die Notwendigkeit hin, dass praktizierende Arzte, die NF1-Patienten behandeln oder betreuen, diese Faktoren in ihrem Behandlungskonzept berucksichtigen sollten. Psychotherapie, psychiatrische Behandlung und psychosoziale Angebote sind dabei wesentlich.

Although allogeneic hematopoietic stem cell transplantation (HSCT) features severe physical and psychological strain, no previous study has prospectively investigated fatigue beyond 3 years after transplantation. We investigated the temporal course of fatigue over 5 years, compared patients with the general population (GP) and tested for treatment- and complication-related risk factors. Patients were assessed before conditioning (T0, N=239) and at 100-day (T1, N=150), 1-year (T2, N=102) and 5-year (T3, N=45) follow-up. We measured fatigue with the Multidimensional Fatigue Inventory-20. Patients were compared with the GP at T0 and at T3. Global fatigue increased from T0 to T1 (t=3.85, P

In this prospective multicenter study, we investigated cancer-and-treatment-specific distress (CTXD) and its impact on symptoms of posttraumatic stress disorder (PTSD) in patients undergoing allogeneic hematopoietic stem cell transplantation (HSCT).Patients were consulted before (T0, N = 239), 3 (T1, N = 150), and 12 months (T2, N = 102) after HSCT. Medical (eg, diagnosis and pretreatment) and demographic information, CTXD and PTSD (PCL-C) were assessed.Random intercept models revealed that the sum score of CTXD was highest pre-HSCT (T0), decreased by T1 (γ = -.18, 95% CI [-.26/-.09]), and by T2 (γ = -.10, 95% CI [-.20/-.00]). Uncertainty, family strain, and health burden were rated most distressing during HSCT. Uncertainty and family strain decreased from T0 to T1 (γ = -.30, 95% CI [-.42/-.17]; γ = -.10, 95% CI [-.20/-.00]) and health burden from T1 to T2 (γ = -.21, 95% CI [-.36/.05]). Women were more likely to report uncertainty (γ = .38, 95% CI [.19/.58]), family strain (γ = .38, 95% CI [.19/.58]), and concerns regarding appearance and sexuality (γ = .31, 95% CI [.14/.47]) than men. Uncertainty (γ = .18, 95% CI [.12/.24]), appearance and sexuality (γ = .09, 95% CI [.01/.16]), and health burden (γ = .21, 95% CI [.14/.27]) emerged as predictors of PTSD symptomatology across the 3 assessment points.Our data provide first evidence regarding the course of 6 dimensions of CTXD during HSCT and their impact on PTSD symptomatology. Specifically, results emphasize the major burden of uncertainty pre-HSCT and the impact of uncertainty and concerns regarding appearance and sexuality on PTSD symptomatology.

Background Owing to its neurotoxicity, allogeneic hematopoietic stem cell transplantation (HSCT) carries risks for cognitive impairment. In this multicenter study, we prospectively evaluated cognitive functioning and its medical and demographic correlates in patients undergoing allogeneic HSCT. Methods A total of 102 patients were consecutively assessed prior to (T0), 100 ± 20 days (T1) after, and 12 ± 1 months (T2) after HSCT (61% men, 41% acute myeloid leukemia). A comprehensive neuropsychological test battery was applied to evaluate attention, memory, executive function, and fine motor function, summing up into 14 test scores. Results Before and after HSCT, patients performed below test norms in up to 50% of the test scores. Patients were mostly impaired on word fluency (24%, T0), fine motor function, and verbal delayed recall (19% each, T2). Impairment on ≥1/5 cognitive domains occurred in 47% (T0) and 41% (T2) of the patients. Performance (mean z-scores) partially improved over time (i.e., visual span forward, verbal learning, and word fluency). However, from baseline to T2, 16% of the patients showed reliable decline on ≥3/14 test scores (reliable change index method). For the majority of neuropsychological subtests, no associations with conditioning intensity, total body irradiation, graft-versus-host disease, cyclosporine treatment, and length of hospital stay were found. Age and premorbid intelligence level were consistently associated with cognition. Conclusions Below average cognitive performance is common in this patient group. In addition, a subgroup shows reliable cognitive decline after allogeneic HSCT. Healthcare professionals should be aware of these treatment-related cognitive side effects. Copyright © 2012 John Wiley & Sons, Ltd.

Objective: Studies on cognitive function in paediatric patients suffering head trauma suggest neuropsychological impairment even after mild traumatic brain injury (MTBI). The present study examined the feasibility of abbreviated neuropsychological testing in different settings in children and adolescents following MTBI. Methods: Within the scope of two prospective studies on psychosocial and cognitive outcome, 71 school-aged children with mild, moderate or severe TBI were assessed. In addition, 15 healthy children were included in the study. The abbreviated instrument comprises three standardized tests measuring attention and memory functions (Digit Symbol, Digit Span, learning trials of the German Auditory Verbal Learning Test). Impairment rates were calculated according to a defined cut-off score for clinically significant cognitive impairment. Results: Abbreviated testing could easily be implemented both in the acute and post-acute clinical setting. Out of the children with MTBI, 12% (shortly after injury) and 30% (2 months after injury), respectively, were classified as cognitively impaired. Following moderate or severe TBI, impairment occurred in 50% of the patients. Healthy children showed the best performance, while children with severe TBI performed worst. Conclusion: Results suggest that abbreviated testing allows detection of MTBI-related cognitive dysfunction. Identified children should be referred to a clinical neuropsychologist for comprehensive assessment.

Die in mehreren Studien gefundenen kognitiven Störungen bei Tumorpatienten nach Chemotherapie werden zumeist mit der Zytostatikaneurotoxizität assoziiert. In der vorliegenden Arbeit wird der Zusammenhang von Angst, Depression und Posttraumatischer Belastungsstörung mit der kognitiven Leistungsfähigkeit bei Frauen mit Mammakarzinom untersucht. Insgesamt wurden 76 Brustkrebspatientinnen fünf Jahre nach Abschluss der onkologischen Behandlung mit neuropsychologischen Testverfahren sowie mit der Hospital Anxiety and Depression Scale – Deutsche Version (HADS-D) und der Posttraumatic Stress Disorder Checklist – Civilian Version (PCL-C) untersucht: 23 nach Standard- und 24 nach Hochdosistherapie sowie 29 nach Brustoperation und Strahlentherapie als Vergleichsgruppe. Signifikante Zusammenhänge sind vor allem zwischen kognitiven Funktionen und Intrusionssymptomen einer Posttraumatischen Belastungsstörung (PTBS) festzustellen. Bei Patientinnen nach Standardtherapie weisen Intrusionen der PTBS einen moderaten Zusammenhang mit der globalen kognitiven Beeinträchtigung auf. Die Ergebnisse der Studie deuten auf multidimensionale Einfluss- und moderierende Faktoren bei der Entwicklung kognitiver Defizite bei Brustkrebspatientinnen nach onkologischer Therapie hin.

Schadel-Hirn-Trauma ist eine der haufigsten Ursachen fur funktionelle Beeintrachtigungen im Kindes- und Jugendalter. Im Rahmen eines Projektes zur Verbesserung der ambulanten Rehabilitation und Nachsorge wurden in 4 Stadten Deutschlands Beratungsstellen fur betroffene Familien geschaffen. Dargestellt werden die Ergebnisse zweier Teilstudien, die zum einen auf eine Prozessanalyse der Netzwerkarbeit und zum anderen auf eine prospektive Verlaufsuntersuchung abzielten. Die Prozessanalyse basierte auf der Auswertung einer Datenbank, die fur diese Studie entwickelt wurde. Mit einer prospektiven Langsschnittuntersuchung, in die zum ersten Messzeitpunkt insgesamt 103 Familien eingeschlossen werden konnten, wurden an den 4 Projektstandorten Teilnehmer zu 3 Messzeitpunkten in einem Interview und per Fragebogen befragt. Erfasst wurden die gesundheitsbezogene Lebensqualitat, Inanspruchnahme und Versorgungszufriedenheit. Mit einer Unterstichprobe wurde zusatzlich ein neuropsychologisches Kurzassessment durchgefuhrt. Insgesamt betrachtet, kann die Lebensqualitat der Kinder und Jugendlichen als gut bezeichnet werden. Es wurden kaum Gesundheitsdienste in Anspruch genommen. Eine kindgerechte Versorgung war pradiktiv fur die Versorgungszufriedenheit der Eltern. Das Kurzassessment erwies sich als praktikable Methode, um Kinder und Jugendliche mit speziellem Versorgungsbedurfnis zu identifizieren.

The aim of the study was to assess cognitive performance in patients with hematological malignancies before, and 3 months after, allogeneic hematopoietic stem cell transplant (HSCT). A consecutive sample of 39 patients was assessed before admission with a comprehensive neuropsychological test battery and health-related quality-of-life (HRQoL) questionnaires; 19 of these patients were retested around 100 days post HSCT. Test results were compared with normative data and revealed minimal differences at both time points in the level of group-means. One parameter - simple reaction time - was significantly worse (prolonged) at second measurement after HSCT. According to the definition of an impairment score (more than three impaired functions), 26% of patients were classified as impaired before as well as after HSCT. Neuropsychological test results did not vary systematically according to medical variables such as extent of pretreatment, graft-versus-host-disease (GvHD) and kind of conditioning protocol. As a dimension of HRQoL, self-rated cognitive function was in the normal range before and after HSCT. Significant correlations between HRQoL and neuropsychological parameters were related to symptom scales. This study showed impairments of neuropsychological performance for a subgroup of patients before and after allogeneic HSCT. Systematic effects of conditioning, medical variables or self-rated HRQoL could not be observed.

Background: Studies on cognitive functioning in breast cancer patients point out that a subset of women exhibit chemotherapy-related neuropsychological impairment. Thereby, high-dose therapy may elevate the risk of cognitive dysfunctions. The primary purpose of the study was to evaluate the impact of high-dose versus standard-dose chemotherapy on the late neuropsychological outcome in randomized assigned high-risk breast cancer survivors. Next to focusing prevalence, function specificity and extent of cognitive impairment, the question as to whether doses-dependant group differences occur was investigated. Patients and methods: Twenty-four high-dose and 23 standard-dose patients 5 years, on average, after treatment underwent a comprehensive neuropsychological assessment. In addition, 29 early-stage breast cancer patients matched for age, education and time since treatment were recruited as a comparison group. Results: Global cognitive impairment was observed in 8% of high-dose versus 13% of standard-dose compared with 3% of early-stage breast cancer patients. Compared with normative data, all patient groups performed worse on one attention subtest measuring the simple reaction time (P < 0.001 in each case). By contrast, no significant between-group differences on the late neuropsychological outcome were found. Conclusions: Five years after treatment, standard-dose patients were slightly, but not significantly, more impaired in cognitive performance than high-dose patients.

Purpose Patients with brain metastases may experience treatment-related cognitive deficits. In this study, we prospectively assessed the self-reported cognitive abilities of patients with brain metastases from any solid primary cancer before and after irradiation of the brain. Methods and Materials The treatment group (TG) consisted of adult patients (n=50) with brain metastases who received whole or partial irradiation of the brain without having received prior radiation therapy (RT). The control group (CG) consisted of breast cancer patients (n=27) without cranial involvement who were treated with adjuvant RT. Patients were recruited between May 2008 and December 2010. Self-reported cognitive abilities were acquired before RT and 6 weeks, 3 months, and 6 months after irradiation. The information regarding the neurocognitive status was collected by use of the German questionnaires for self-perceived deficits in attention (FEDA) and subjectively experienced everyday memory performance (FEAG). Results The baseline data showed a high proportion of self-perceived neurocognitive deficits in both groups. A comparison between the TG and the CG regarding the course of self-reported outcomes after RT showed significant between-group differences for the FEDA scales 2 and 3: fatigue and retardation of daily living activities ( P =.002) and decrease in motivation ( P =.032) with an increase of attention deficits in the TG, but not in the CG. There was a trend towards significance in FEDA scale 1: distractibility and retardation of mental processes ( P =.059) between the TG and the CG. The FEAG assessment presented no significant differences. An additional subgroup analysis within the TG was carried out. FEDA scale 3 showed significant differences in the time-related progress between patients with whole-brain RT and those receiving hypofractionated stereotactic RT ( P =.025), with less decrease in motivation in the latter group. Conclusion Self-reported attention declined in patients with brain metastases after RT to the brain, whereas it remained relatively stable in breast cancer patients.

Neurofibromatosis type 1 (NF1) is a rare genetic disorder with an autosomal dominant inheritance. It is a chronic condition that affects mostly the skin and causes it to grow multiple tumors and also affects the nervous system. The clinical picture is complex with highly variable symptoms and clinical severity. This study explores the psychological distress in 129 adult patients with NF1. It turned out that adults with NF1 have a higher level of psychological distress compared to the general population. The psychological distress is stable within a year. Physicians treating patients with NF1 should consider the psychological distress in NF1 patients. Psychotherapy, psychiatric treatment and psychosocial offers are therefore essential.

Owing to its neurotoxicity, allogeneic hematopoietic stem cell transplantation (HSCT) carries risks for cognitive impairment. In this multicenter study, we prospectively evaluated cognitive functioning and its medical and demographic correlates in patients undergoing allogeneic HSCT.A total of 102 patients were consecutively assessed prior to (T0 ), 100 ± 20 days (T1 ) after, and 12 ± 1 months (T2 ) after HSCT (61% men, 41% acute myeloid leukemia). A comprehensive neuropsychological test battery was applied to evaluate attention, memory, executive function, and fine motor function, summing up into 14 test scores.Before and after HSCT, patients performed below test norms in up to 50% of the test scores. Patients were mostly impaired on word fluency (24%, T0 ), fine motor function, and verbal delayed recall (19% each, T2 ). Impairment on ≥ 1/5 cognitive domains occurred in 47% (T0 ) and 41% (T2 ) of the patients. Performance (mean z-scores) partially improved over time (i.e., visual span forward, verbal learning, and word fluency). However, from baseline to T2 , 16% of the patients showed reliable decline on ≥ 3/14 test scores (reliable change index method). For the majority of neuropsychological subtests, no associations with conditioning intensity, total body irradiation, graft-versus-host disease, cyclosporine treatment, and length of hospital stay were found. Age and premorbid intelligence level were consistently associated with cognition.Below average cognitive performance is common in this patient group. In addition, a subgroup shows reliable cognitive decline after allogeneic HSCT. Healthcare professionals should be aware of these treatment-related cognitive side effects.

Little is known about the course of health-related quality of life (HRQOL) and functional outcome parameters in children and adolescents with TBI. In addition, a neuropsychological screening instrument would be useful for routine clinical care.To describe health-related quality of life and psychosocial consequences following mild traumatic brain injury (TBI).One chose a prospective, longitudinal design (two measurement time points). Methods included a telephone interview and a questionnaire, which was mailed to the parents whose children (older than 4 years of age) were admitted (with TBI) to a collaborating hospital. In addition, a feasibility study for screening children for cognitive side effects, attention and memory tasks was conducted. A group of 59 parents filled out questionnaires assessing health-related quality of life (KINDL), behavioural problems (SDQ) and health status (FS-II-R). Ten families participated in the feasibility study.Results indicated that HRQOL, behavioural problems and health status remained stable over time. Compared to the reference groups, no significant differences in HRQOL were noted. Thirty per cent of the children screened were classified as being cognitively impaired.Mild TBI resulted in no decline in the children's health outcome after injury. The cognitive screening approach proved itself to be a useful instrument for routine clinical care.

The objectives of this study were to describe and analyse the current aftercare practise following define TBI in four German cities. A retrospective, cross-sectional design was chosen in order to investigate the research questions. Methods and procedures included a questionnaire mailed to parents whose children were admitted with TBI to one of seven collaborating hospitals. A total of 564 parents participated in the study. The results indicate that aftercare services were rarely utilised. Furthermore, it was found that the behaviour of the physician in charge had a great impact on parental satisfaction with healthcare services. In conclusion, the findings described in this article underline the need to improve communication between acute and post-acute services.

Background Many patients with cancer suffer from distress, anxiety and depression. However, studies on patients with brain metastases are lacking. In this exploratory study we prospectively assessed distress, anxiety and depression in patients with brain metastases from different solid primary tumour treated with radiotherapy to the brain. Methods Patients were recruited between May 2008 and December 2010. Distress, anxiety and depression were subjectively evaluated before radiotherapy, 6 weeks, 3 months and 6 months after radiotherapy using the validated National Comprehensive Cancer Network Distress Thermometer (DT) and the Hospital Anxiety and Depression Scale (HADS). The treatment group consisted of adult patients (n = 67) with brain metastases who were treated with whole-brain radiotherapy (n = 40) or hypofractionated stereotactic radiotherapy (n = 27). The control group comprised of patients (n = 32) diagnosed with breast cancer without cranial involvement who received adjuvant whole breast radiotherapy. Forty-six patients (24 in the treatment group) completed the study after six months. Results Before radiotherapy, the treatment group experienced higher distress than the control group (p = 0.029). Using a cut-off ≥5, 70% of the treatment group were suffering from significant distress (66% of the control group). No significant time-by-group interaction on distress, anxiety and depression was observed. At all time points, a high proportion of patients reported psychological stress which featured more prominently than most of the somatic problems. Global distress correlated strongly with the Hospital Anxiety score before radiotherapy, but only moderately or weakly with both HADS scores after radiotherapy with the weakest association 6 months after radiotherapy. Conclusion In conclusion, the course of distress, anxiety and depression does not differ significantly between patients with brain metastases and breast cancer patients without cranial involvement. This finding suggests that both groups need similar psychological support during their treatment. Both screening instruments should be used as they cover different facets of distress.