Linking EORTC QLQ-C-30 and PedsQL/PEDQOL physical functioning scores in patients with osteosarcoma.

PURPOSE: The available questionnaires for quality-of-life (QoL) assessments are age-group specific, limiting comparability and impeding longitudinal analyses. The comparability of measurements, however, is a necessary condition for gaining scientific evidence. To overcome this problem, we assessed the viability of harmonising data from paediatric and adult patient-reported outcome (PRO) measures. METHOD: To this end, we linked physical functioning scores from the Paediatric Quality of Life Inventory (PedsQL) and the Paediatric Quality of Life Questionnaire (PEDQOL) to the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30) for adults. Samples from the EURAMOS-1 QoL sub-study of 75 (PedsQL) and 112 (PEDQOL) adolescent osteosarcoma patients were concurrently administered both paediatric and adult questionnaires on 98 (PedsQL) and 156 (PEDQOL) occasions. We identified corresponding scores using the single-group equipercentile linking method. RESULTS: Linked physical functioning scores showed sufficient concordance to the EORTC QLQ-C30: Lin's ρ = 0.74 (PedsQL) and Lin's ρ = 0.64 (PEDQOL). CONCLUSION: Score linking provides clinicians and researchers with a common metric for assessing QoL with PRO measures across the entire lifespan of patients.

Quality of Life of Patients With Osteosarcoma in the European American Osteosarcoma Study-1 (EURAMOS-1): Development and Implementation of a Questionnaire Substudy.

BACKGROUND: The quality of life (QoL) of patients with osteosarcoma (OS) may be adversely affected by the disease or its treatment. Therefore, it is important to understand the QoL of patients undergoing treatment for OS to improve the QoL. We report on the first prospective international QoL study that was embedded within a large randomized clinical trial from 4 national study groups. OBJECTIVE: This paper aimed to describe the QoL study development, methodology, accrual details, and characteristics of the QoL cohort. METHODS: A total of 2260 patients registered in the EURopean AMerican Osteosarcoma Study-1 (EURAMOS-1), of whom 97.92% (2213/2260) were eligible for the optional QoL assessment and could participate in terms of questionnaire availability. Overall, 61.86% (1369/2213) of patients and/or proxies completed the QoL evaluation at the first assessment time point (E1) after the start of preoperative treatment. The QoL measures used (self- and/or proxy reports) depending on the patient's age and national study group. Participants and nonparticipants in the ancillary QoL study were compared regarding relevant demographic and disease-related characteristics at registration in the trial. RESULTS: The participation rate at time point E1 did not differ with regard to age, gender, the occurrence of pathological fracture, or the presence of any metastases at diagnosis. No differences were found regarding the primary tumor site. Only the national study group affiliation had an influence on participation. Participation decreased linearly with trial progress up to 20% at the final time point of QoL assessment. CONCLUSIONS: This study demonstrates the feasibility of international cooperation for the purpose of assessing and understanding the QoL of pediatric and adolescent/young adult patients with cancer. Future outcomes of this QoL substudy will help to adapt interventions to improve QoL.

Vaccination against influenza at a European pediatric cancer center: immunization rates and attitudes among staff, patients, and their families.

BACKGROUND: Influenza is an important cause of infectious morbidity in pediatric cancer patients. We conducted a single-center survey to explore adherence and attitudes towards the recommended annual influenza vaccination. METHODS: Self-administered, standardized questionnaires were distributed to 143 staff members and 264 families. Items analyzed included demographic data, knowledge about influenza, history of prior influenza infections and vaccinations, routes of information and education, and attitudes towards the recommended influenza. Variables associated with vaccination were explored by univariate and multivariate analyses. RESULTS: One hundred six staff members with patient contact and 139 primary caretakers completed the questionnaire. Fifty-nine percent of staff members and 60% of the caretakers provided correct answers to all four knowledge questions; 32 and 54% reported a history of prior influenza, and 61 and 47% had received at least one influenza vaccination in the past. Vaccination rates for the previous season were 47, 34, 30, 25, and 29% in staff members, primary caretakers, their partners, diseased children, and their siblings, respectively. Main motivations (>75% in ≥ 1 cohort) for vaccination were prevention of influenza disease and concerns to transmit it to others (77-100%) and reasons for not being immunized concerns of adverse effects and use of alternative protection (33-83%). Variables significantly associated with vaccination by multivariate analysis included receipt of influenza vaccinations in the past (OR 2.2-20.5), recommendations by health care providers (OR 4.8-45.5), a lower level of education (caretakers; OR 2.2), and younger age (children; OR 0.9). CONCLUSIONS: The results of this survey indicate insufficient vaccination rates and provide potential approaches for improved vaccination strategies in the setting of pediatric cancer care.

Quality of survival and cognitive performance in children treated for medulloblastoma in the PNET 4 randomized controlled trial.

BACKGROUND: The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied. METHODS: In the HIT-SIOP PNET4 randomized controlled trial, cognitive assessments, including Full Scale, Verbal and Performance IQ, Working Memory, and Processing Speed, were undertaken in 137 survivors of standard-risk medulloblastoma from 4 European countries. QoS questionnaires, including self-reports and/or parent reports of the Behavior Rating Inventory of Executive Function (BRIEF), the Health Utilities Index, the Strengths and Difficulties Questionnaire, and the Pediatric Quality of Life Inventory, were completed for 151 survivors. Correlations among direct cognitive assessments, QoS questionnaires, and clinical data were examined in participants with both assessments available (n = 86). RESULTS: Correlations between direct measures of cognitive performance and QoS questionnaires were weak, except for moderate correlations between the BRIEF Metacognition Index (parent report) and working memory (r = .32) and between health status (self-report) and cognitive outcomes (r = .35-.44). Correlations among QoS questionnaires were moderate to strong both for parent and self-report (r = .39-.76). Principal Component Analysis demonstrated that questionnaires and cognitive assessments loaded on 2 separate factors. CONCLUSIONS: We hypothesize that the strong correlations among QoS questionnaires is partially attributable to the positive/negative polarity of all questions on the questionnaires, coupled with the relative absence of disease-specific questions. These factors may be influenced by respondents' personality and emotional characteristics, unlike direct assessments of cognitive functioning, and should be taken into account in clinical trials.

Strategies to improve the quality of survival for childhood brain tumour survivors.

BACKGROUND: Tumours of the central nervous system (CNS) are the most frequent solid tumours and the second most frequent type of cancer in children and adolescents. Overall survival has continuously improved in Germany, since an increasing number of patients have been treated according to standardised, multicentre, multimodal treatment recommendations, trials of the German Paediatric Brain Tumour Consortium (HIT-Network) or the International Society of Paediatric Oncology-Europe (SIOP-E) during the last decades. Today, two out of three patients survive. At least 8000 long-term childhood brain tumour survivors (CBTS) are currently living in Germany. They face lifelong disease- and treatment-related late effects (LE) and associated socioeconomic problems more than many other childhood cancer survivors (CCS). METHOD: We review the LE and resulting special needs of this particular group of CCS. RESULTS: Despite their increasing relevance for future treatment optimisation, neither the diversity of chronic and cumulative LE nor their pertinent risk factors and subsequent impact on quality of survival have yet been comprehensively addressed for CBTS treated according to HIT- or SIOP-E-protocols. Evidence-based information to empower survivors and stakeholders, as well as medical expertise to manage their individual health care, psychosocial and educational/vocational needs must still be generated and established. CONCLUSION: The establishment of a long-term research- and care network in Germany shall contribute to a European platform, that aims at optimising CBTSs' transition into adulthood as resilient individuals with high quality of survival including optimal levels of activity, participation and acceptance by society.

Heart rate variability reflects the natural history of physiological development in healthy children and is not associated with quality of life.

BACKGROUND: Quality of life (QoL), being the sum expression of diverse influencing factors, is not easy to determine. A clinically relevant option would be to identify and measure quality of life on the basis of physiological parameters which correlate plausibly and statistically with psychometrically measured QoL. Analysis of heart rate variability (HRV) offers readily measurable physiological parameters which could be of use here. A correlation of HRV with both course of disease and QoL has been reported in patients with chronic illness. Various psychometric instruments have been developed for use in paediatric oncology. The aim of this study was to obtain data on HRV and QoL and their correlations, initially in healthy children. METHODS: Holter ECG and quality of life were examined in 160 children and adolescents (72 male) aged between 8 and 18 years. QoL was determined with the established questionnaire PEDQoL. Standard parameters of HRV from the frequency domain were calculated and correlated with QoL domains using Spearman (nonparametric) correlation analysis. RESULTS: Minor but significant associations were revealed only with regard to the PEDQoL domain "autonomy" on the one hand and heart rate and HRV (e.g. MRR, MRRn, MRRd, HRV_ULF, SDNN) parameters which evidently reflect distinct physiological functions on the other. CONCLUSIONS: In healthy children and adolescents we have a first indication that there is a correlation between parameters of HRV and QoL. However, to a greater extent, HRV reflects associated physiological processes of the autonomic nervous system. A higher correlation is more likely to be found in chronically ill children.

Eurythmy therapy in the aftercare of pediatric posterior fossa tumour survivors--a pilot study.

BACKGROUND: Pediatric posterior fossa brain tumour survivors are burdened with extensive neurologic, emotional, behavioral and mental impairments. Even long-term common remediation therapies such as conventional physical therapy and occupational therapy do not warrant full recovery. Innovative complementary therapy strategies offer a new option that needs evaluation. EYT is a movement therapy that belongs to the field of mind-body therapies (MBTs). This holistic approach aims to promote self-regulation and self-healing powers e.g. in cancer patients. This pilot study is a first attempt to assess the feasibility, treatment adherence and impact of eurythmy therapy (EYT) in pediatric neurooncology. METHODS: Seven posterior fossa tumour survivors who each participated in 25 EYT interventions over 6 months were followed for an additional 6 months. The outcome parameters cognitive functioning, neuromotor functioning and visuomotor integration were assessed at baseline as well as six and 12 months afterwards. RESULTS: We found good adherence and improvements in cognitive and neuromotor functioning in all children and better visuomotor integration in 5/7 children after 6 months. After 12 months, neuromotor functioning and visuomotor integration diminished again to some extent. CONCLUSION: EYT in pediatric cerebellar tumour survivors is feasible and patients may profit from this new approach.

Spinal cord sparing reirradiation with helical tomotherapy.

BACKGROUND: The purpose of this study was to present planning, feasibility, toxicity, and outcome of helical tomotherapy for spinal cord-sparing reirradiation of spinal metastases and tumors. METHODS: Thirty-six patients with spinal metastases and tumors who had undergone previous radiotherapy were reirradiated with helical tomotherapy because of tumor progression, pain, or compromised stability. Mean spinal cord dose of previous radiotherapy was 36.3 grays (Gy) after a median time interval of 17.5 months. Mean prescribed dose of reirradiation was 34.8 Gy. Daily megavoltage computed tomography (CT) image guidance was performed to assure precise dose application. RESULTS: Mean beam time was 8.4 minutes; the dose maximum to the spinal cord at reirradiation could be limited to a 9.8-Gy median dose (minimum, 5.2 Gy; maximum, 21.8 Gy). Significant pain relief from a median value of 7 on the visual analogue scale before therapy to a median value of 3 at 6 weeks after radiotherapy was achieved. One- and 2-year local control was 76% and 63%; overall survival was 67% after 1 year and 58% after 2 years. One grade 2 skin toxicity and no grade 3 or higher toxicities were observed. CONCLUSIONS: Helical tomotherapy makes reirradiation of spinal metastases and excellent avoidance of the spinal cord possible and achieves good pain relief and local control. With a minimal distance of several millimeters between target volume and spinal cord, tailor-made dose distributions with steep dose gradients around previously irradiated tissue are obtained and precisely applied with daily megavoltage CT-based image guidance.