Encouraging greater empowerment for adolescents in consent procedures in social science research and policy projects.

The United Nations Convention on the Rights of the Child emphasizes the importance of allowing children and adolescents to influence decisions that are important to them following their age and maturity. This paper explores the principles, practices, and implications around using parental versus child/adolescent consent when participating in social science research and policy development. Experiences from two studies are presented: The Confronting Obesity: Co-creating policy with youth (CO-CREATE) and the Health Behaviour in School-aged Children (HBSC) study, a World Health Organization (WHO) Collaborative Cross-National study. Although parental consent may be an important gatekeeper for protecting children and adolescents from potentially harmful research participation, it may also be considered an obstacle to the empowerment of children and adolescents in case they want to share their views and experiences directly. This paper argues that evaluation of possible harm should be left to ethics committees and that, if no harm related to the research participation processes is identified and the project has a clear perspective on collaborating with the target group, adolescents from the age of 12 years should be granted the legal capacity to give consent to participate in the research project. Collaboration with adolescents in the development of the research project is encouraged.

Psychometric properties of the Activities Scale for Kids-performance after allogeneic hematopoietic stem cell transplantation in adolescents and children : Results of a prospective study on behalf of the German-Austrian-Swiss GVHD Consortium.

BACKGROUND: The psychometric properties of an instrument, the Activity Scale for Kids-performance (ASKp), were assessed which was proposed to capture physical functioning after allogeneic hematopoietic stem cell transplantation (HSCT). Additionally, this multicenter observational prospective study investigated the influence of clinical correlates focusing on chronic graft-versus-host disease (cGVHD). METHODS: Patient-reported ASKp, clinician-reported Karnofsky/Lansky status (KPS/PSS), patient characteristics and cGVHD details were assessed of 55 patients with a median age of 12 years at baseline after day +100 post-HSCT and every 3 months during the next 18 months. The psychometric properties were evaluated and ASKp and KPS/PSS status was compared using ANOVAS and multiple regression models. RESULTS: The German version of the ASKp showed good psychometric properties except for ceiling effects. Discrimination ability of the ASKp was good regarding the need for devices but failed to predict cGVHD patients. Both the ASKp and the KPS/PSS were associated with patients after adoptive cell therapy being in need for devices, suffering from overlap cGVHD and from steroid side effects but not with patients' age and gender. In contrast to the KPS/PSS the ASKp only showed significant differences after merging moderate and severe cGHVD patients when comparing them to No-cGVHD (F = 4.050; p = 0.049), being outperformed by the KPS/PSS (F = 20.082; p < 0.001). CONCLUSION: The ASKp showed no clear advantages compared to KPS/PSS even though economical and patients' effort was higher. Further application range may be limited through ceiling effects. Both should be taken into consideration. Therefore, the results may not support the usage of ASKp after HSCT and rather suggest KPS/PSS, both patient and clinician reported.

[Exercise Behavior, Costs of Physical Inactivity, and Physical Activity Promotion in Austria]. / Bewegungsverhalten, Kosten mangelnder körperlicher Aktivität und Bewegungsförderung in Österreich.

In this article, we present the Austrian data on physical activity, the societal costs and outcomes of physical inactivity, and the areas of influence to promote physical activity. Based on an analysis of the status quo and its consequences, suggestions on relevant measures to counter physical inactivity are made. While the proportion of Austrians that do not fulfill the current recommendations on physical activity is high, the Austrian population is physically more active than many populations of other countries. In Austria, major differences in physical activity are associated with demographic, socio-economic, and geographic factors. The economic burden related to physical inactivity is considerable, with regard to both societal costs and outcomes. This includes major health and social care costs, productivity losses (estimated at around 248 million Euro in 2017 in Austria), and life years lost due to premature death. Evidence-based areas of influence to increase physical activity include kindergartens and schools, the workplace, communities, cities, long-term care facilities, and nature.

[Austrian Physical Activity Recommendations for Women during and after Pregnancy, Children of Kindergarten age, Children, and Adolescents]. / Österreichische Bewegungsempfehlungen für Frauen während der Schwangerschaft und danach, für Kinder im Kindergartenalter und für Kinder und Jugendliche.

In this article, based on international recommendations, we present the Austrian physical activity recommendations for women during and after pregnancy, children of kindergarten age, children, and adolescents. For women during pregnancy and in the first months after delivery, the exercise recommendations do not differ from those for adults. Movement restrictions apply only if health problems are present. Children under 6 years of age should engage in a variety of motor tasks for up to 3 hours a day at medium and high intensity levels, so that they can grow up healthy. In the age group of 6 to 18 years of age, daily exercise of at least one-hour duration is recommended. When choosing the type of exercise, the level of development and the activity levels of children and adolescents should be taken into account. The exercise recommendations are intended for dissemination in the field of health promotion and to serve as the basis for the development and evaluation of health-promoting exercise programs in Austria.

Does the school performance variable used in the International Health Behavior in School-Aged Children (HBSC) Study reflect students' school grades?

BACKGROUND: Given the pressure that educators and policy makers are under to achieve academic standards for students, understanding the relationship of academic success to various aspects of health is important. The international Health Behavior in School-Aged Children (HBSC) questionnaire, being used in 41 countries with different school and grading systems, has contained an item assessing perceived school performance (PSP) since 1986. Whereas the test-retest reliability of this item has been reported previously, we determined its convergent and discriminant validity. METHODS: This cross-sectional study used anonymous self-report data from Austrian (N = 266), Norwegian (N = 240), and Canadian (N = 9,717) samples. Students were between 10 and 17 years old. PSP responses were compared to the self-reported average school grades in 6 subjects (Austria) or 8 subjects (Norway), respectively, or to a general, 5-category-based appraisal of most recent school grades (Canada). RESULTS: Correlations between PSP and self-reported average school grade scores were between 0.51 and 0.65, representing large effect sizes. Differences between the median school grades in the 4 categories of the PSP item were statistically significant in all 3 samples. The PSP item showed predominantly small associations with some randomly selected HBSC items or scales designed to measure different concepts. CONCLUSIONS: The PSP item seems to be a valid and useful question that can distinguish groups of respondents that get good grades at school from those that do not. The meaning of PSP may be context-specific and may have different connotations across student populations from different countries with different school systems.

[Health complaints of Austrian adolescents - results from the HBSC-survey 1994 to 2006]. / Gesundheitliche Beschwerden österreichischer Jugendlicher - Ergebnisse der HBSC-Studie 1994 bis 2006.

BACKGROUND: This article describes changes in health complaints of Austrian adolescents during a period of 12 years. METHODS: The HBSC (Health Behaviour in School-aged Children) symptom checklist assesses how often specific physical and emotional symptoms occurred in the past 6 months. We display data collected in 1994, 1998, 2002 and 2006 for the whole sample (about 4500 students at each time point) as well as separated by age, gender and family affluence. RESULTS: The symptom load in Austrian adolescents decreased in the past 12 years slowly, but continuously. Boys and younger adolescents scored more favourably at all time points. Only in 2006, not at an earlier measurement time point, an impact of family affluence on symptom load could be detected. CONCLUSIONS: With the exception of the socioeconomic impact on symptom load in the year 2006, from an Austrian perspective, these results are favourable. The HBSC-data to be collected in 2010 will show if this trend continues to increase.

[Diagnostic studies]. / Diagnostische Studien.

Despite the large availability of diagnostic tests and procedures and their importance to medicine, evidence for their appropriate use is often limited. Unfortunately, the evaluation of tests is difficult and susceptible to several forms of bias. This paper describes the standard methods for characterizing and comparing the accuracy of diagnostic tests and addresses initiatives such as STARD and QUADAS to improve the quality of diagnostic studies. We inform the reader how to critically appraise the study results and when to rely on the results of diagnostic accuracy studies or randomised clinical trials.

[Randomised controlled trials]. / Randomisiert kontrollierte Studien.

Nowadays the Randomised Controlled Trial (RCT) is seen as the gold standard for estimating the effectiveness of an observed intervention, achieving the highest hierarchy of evidence of primary research settings. Its study design basically includes two groups of patients, an intervention group and a control group; patients are randomly allocated to these two groups. After intervention or control intervention took place, predefined outcomes are quantified and compared in the two groups. The study design aims at eliminating all confounding and distorting factors (Bias and Confounder), so that different outcomes between the groups can be only explained by the intervention. There is a broad variation of quality of published RCTs. The reliability of results and extent to which findings provide a correct basis for generalisation to other circumstances needs to be validated. As part of a methods series of the Wiener Medizinische Wochenschrift this paper will discuss principles of study design, critical appraisal and limitations of RCTs.

Health-related quality of life in Austrian elementary school children.

BACKGROUND: Health-related quality of life (HRQL) is frequently used as an outcome criterion to evaluate the quality and effect of different therapies. However, little is known about the HRQL of the general population, the prevalence of specific HRQL problems and about which factors have an impact on HRQL assessments. OBJECTIVE: To examine children's HRQL from their own and their parents' perspectives. The study sample consisted of children attending the third and fourth grades of elementary school in the capital of Austria, Europe. METHODS: One thousand four hundred twelve children and 1185 parents completed child- and parent-versions of the Pediatric Quality of Life Inventorytrade mark (PedsQLtrade mark). In addition to the PedsQL questions, children and parents were asked a number of questions with regard to sociodemographic information and specific problems that were hypothesized to be associated with the children's HRQL. RESULTS: Altogether, the children demonstrated a good HRQL and their PedsQL scores were similar to those of children from other developed countries. About 15% of children showed a notably low HRQL, and two-thirds of these children were from financially less privileged families. Multivariate regression analyses identified the following factors associated with the children's HRQL: the family's perceived financial situation, parents' quality of life, children's school performance, medical and/or psychologic problems (eg, dyslexia, recurrent stomachache or headaches), chronic disease, a recent life-event (eg, divorce/separation of parents), and parents' satisfaction with school. CONCLUSIONS: Assessing children's HRQL may be helpful to take preventive action and to identify those who are in urgent need of special services.

Glucocorticoids in the treatment of children with acute lymphoblastic leukemia and hodgkin's disease: a pilot study on the adverse psychological reactions and possible associations with neurobiological, endocrine, and genetic markers.

PURPOSE: We did a controlled study to assess adverse psychological reactions (APR) associated with high-dose glucocorticoid therapy and tried to detect somatic correlates for the observed reactions. PATIENTS AND METHODS: Our study included 37 patients with acute lymphoblastic leukemia (ALL) and 11 patients with Morbus Hodgkin (MH) disease, who were treated with high-dose glucocorticoid therapy, and 26 control patients with other types of malignancies. APRs were assessed with a standardized measure via parent-report. Patients with ALL and MH were further analyzed for signs of neuronal cell death in the cerebrospinal fluid, polymorphisms of the glucocorticoid receptor gene, as well as cortisol, adrenocorticorticotropic hormone, and dehydroepiandrosterone sulfate blood levels. RESULTS: Fifty-four percent of ALL, 36% of MH, and 23% of control patients developed APR in the first few weeks of therapy. Approximately 3.5 months later, the majority of patients with ALL showed no APR, similar to control patients. Patients demonstrating a higher, nonsuppressible secretion of cortisol and/or adrenocorticorticotropic hormone during glucocorticoid therapy were found to be more likely to develop APR. No sign of neuronal cell destruction and no correlation of APR with specific glucocorticoid receptor polymorphisms were found. CONCLUSION: Our results suggest that the development of APR due to glucocorticoid therapy is measurable and correlates with hormonal reaction patterns.

Quality of life from research and clinical perspectives: an example from paediatric psycho-oncology.

In clinical oncology and research, health-related quality of life (HRQL) of patients has increasingly gained attention. Although there is agreement that HRQL is a multidimensional construct incorporating primarily the patient's evaluation of his/her life, the construct lacks a uniform model of conceptualization. This article briefly outlines definitions and methods of assessing quality of life in children and adolescents. The case report of a 10-year-old boy who underwent hematopoietic stem cell transplantation views HRQL from various perspectives. Self- and proxy assessments are compared, and the expertise of psychotherapeutic work is combined with data gathered by standardized questionnaires.

Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being.

GOALS: The purpose of the present study was the assessment of health-related quality of life in adult long-term survivors of childhood cancer and the detection of possible treatment- and cancer-related late effects. The relation of objective medical data and subjective appraisal was also examined by combining the doctor's and the patient's views of the perceived health status. PATIENTS AND METHODS: Seventy-eight young adults at the age of at least 18 years who had been diagnosed with cancer in the years 1975-1995 and were off therapy at least 5 years with no evidence of disease participated. Cancer survivors completed self-rating instruments [SF-36 Health Survey, Nottingham Health Profile (NHP), Beck's Depression Inventory (BDI), State-Trait Anxiety Inventory (STAI) trait-anxiety scale]; the doctor assessed the patient's health by means of the Common Toxicity Criteria (CTCv2). MAIN RESULTS: The cancer survivors showed a mostly higher-than-average positive subjective rating of the various areas of quality of life. In comparison to the general population, the cancer survivors showed lower extents of depression. In 64.1% of the cancer survivors, medical rating and self-assessment regarding the perceived health status corresponded. Cancer survivors who felt severely impaired regarding their subjectively perceived well-being showed worse results in some dimensions of quality of life than persons who subjectively felt mildly impaired. The so-called "unfortunate" persons showed the worst assessment of quality of life and the highest extent of depression and anxiety. CONCLUSIONS: The results of the present study may be helpful in planning an appropriate multidisciplinary, long-term follow-up of childhood cancer survivors.

The TCCS-A short measure to evaluate treatment-related coping and compliance in hospitalised childhood cancer patients and their primary caregivers.

GOALS: This report describes the development and validation of a short rating system to assess treatment-related coping and compliance (TCC) in childhood cancer patients and their primary caregivers. PATIENTS AND METHODS: The initial system contained 21 items referring to supportive parenting style of the caregiver, treatment-related attitudes and behaviour of both caregiver and child, communicative skills of the child and relationships with the health care team. This questionnaire was completed independently by a nurse, a nursery-school teacher, a psychologist and a physician who are all working full time at the oncology unit. The sample under study included 111 patients aged 3-18 years who were on treatment, as well as their caregivers (in most cases the mother). RESULTS: Using defined rules for item reduction, the questionnaire was reduced to 14 items, of which seven were referring to the TCC of the child and seven to the TCC of the caregiver. Cronbach's alpha coefficients ranged from 0.81 to 0.91 across the different assessments, indicating high internal consistency reliability. There was moderate to high agreement amongst observers (intra-class correlation coefficients ranged between 0.50 and 0.68). Construct validity was confirmed by a significant association between a global rating of TCC and the instrument's summary scores in the four assessments. CONCLUSIONS: Our system may be used for clinical trials and clinical monitoring. Further testing of psychometric properties is recommended.

Using a children's book to prepare children and parents for elective ENT surgery: results of a randomized clinical trial.

OBJECTIVE: We evaluated the effects of surgery preparation using a children's book on pre- and postoperative anxiety and distress in 2-10 years old children undergoing tonsillectomy and/or adenoidectomy and their mothers. METHODS: Parents of the experimental group were given the preparation book during the preoperative visit at the hospital, whilst control subjects did not receive the book. Data collection was conducted on the evening prior to surgery (T1), and the evening post surgery (T2). At these two points in time, mothers completed a self-designed feeling states checklist and the state anxiety scale of the State and Trait Anxiety Inventory to assess their perceptions of the child's distress and their own level of anxiety. At T2, nurses were asked to give ratings of patient-caregiver variables, such as level of anxiety, cooperation with care or level of information. The sample under study consisted of 160 mother/child dyads in the experimental group and 240 controls. RESULTS: We found that mothers who received the book exhibited less self-reported state anxiety prior to the operation compared to mothers who did not. Simultaneously, children of the experimental group showed less distress in 4 of 11 feeling states. Nurses assessed the mothers of the experimental group to participate more in the child's care than control mothers. CONCLUSIONS: The results demonstrated that our preparation book can provide educational and anxiety-reducing benefits. Given the relatively low production costs and its easy administration, it can be recommended as a popular, practical and cost-efficient tool to prepare children and parents for surgery and hospitalization.

US as a primary diagnostic tool in relation to negative appendectomy: six years experience.

PURPOSE: To evaluate the effect of ultrasonography (US) on the rate of appendectomy after false-positive diagnosis of acute appendicitis (negative appendectomy). MATERIALS AND METHODS: Data were analyzed in 736 pediatric patients (mean age, 13.2 years) who had undergone appendectomy between 1995 and 2000. Histologic data were compared in patients who underwent US with those who did not undergo imaging prior to surgery. US was performed by a radiologist or a pediatric surgeon or both. RESULTS: A total of 643 (87.4%) of the 736 pediatric patients underwent preoperative US, and 93 (12.6%) of the 736 did not undergo preoperative US. Of the 736 patients, 97 (13.2%) underwent negative appendectomy. Thirty-four (36.6%) of the 93 patients who underwent appendectomy with no preoperative US and 63 (9.8%) of the 643 patients who underwent preoperative US underwent negative appendectomy. There was a significant association between US and positive appendectomy (P <.001). CONCLUSION: US in pediatric patients suspected of having appendicitis can significantly lower the negative appendectomy rate.