Trajectories of illness perceptions in paediatric cancer patients and their parents and associations with health-related quality of life: Results of a prospective-longitudinal study.

OBJECTIVE: In paediatric oncology, little is known about trajectories of illness perceptions and their longitudinal associations with health-related quality of life (HRQoL). Therefore, the aim of this study was to investigate changes in illness perceptions in children and parents over a one-year-period and to investigate predictive value of child's and parent's illness perceptions during acute treatment for child's HRQoL 1 year later. METHODS: N = 65 child-parent-dyads participated in a longitudinal study (retention rate: 80.2%). Children were 4-18 years of age and underwent acute cancer treatment at baseline. Children and parents reported on their own illness perceptions (Illness-Perception-Questionnaire-Revised), as well as on the child's HRQoL (KINDL-R) at baseline and one-year-follow-up. Paired-samples t-tests were calculated to investigate changes over time. A hierarchical multiple regression analysis was performed to investigate predictive value of child's and parent's illness perceptions for child's HRQoL. RESULTS: Child's HRQoL t(63) = -6.73, p < 0.001, their perceptions of coherence (i.e. understanding; t(54) = -2.36, p = 0.022) and consequences of their illness (t(54) = 2.86, p = 0.006), and parent's perception of cyclical trajectory (t(61) = 2.06, p = 0.044) improved from baseline to 1-year-follow-up. All other illness perceptions remained stable. Exploratory post-hoc analyses showed differences in the pattern of change in age-, gender-, and diagnosis-specific subgroups. After controlling for baseline levels of HRQoL, child's perceptions of symptoms and consequences were independent predictors of their HRQoL 1 year later (R2 = 0.396, F(2,52) = 10.782, p < 0.001), whereas no parent's illness perceptions added predictive value. CONCLUSION: In paediatrics, child's and parent's illness perceptions should be assessed. Our findings highlight the importance of illness perceptions as potential modifiable variables in interventions to improve child's HRQoL.

The puppet interview to measure illness perceptions in paediatric oncology: development and psychometric properties in acute treatment and follow-up care.

BACKGROUND: Illness perceptions comprise assumptions about symptoms, timeline, consequences, controllability, and emotional responses to an illness. Recent evidence shows that illness perceptions are associated with coping and well-being. So far, assessment in paediatric care was based on parental report only, since no instrument for the direct assessment of young children was available. We aim to describe the development (incl. indication and contraindication) of an innovative puppet interview to assess illness perceptions in children with cancer from the age of four years. Moreover, we investigate longitudinal trajectories and examine psychometric properties. METHODS: The puppet interview was developed based on the Illness-Perception-Questionnaire-Revised and the Berkeley-Puppet-Interview. Longitudinal trajectories and psychometric properties were examined in a sample of patient-parent dyads (N = 75) in a prospective longitudinal study in acute treatment with a 1-year follow-up (study 1: nT1 = 41, nT2 = 27) and in a cross-sectional study in follow-up care (study 2, n = 34). RESULTS: The puppet interview is comprehensible and well-received by children in acute treatment and follow-up care. There were significant differences in perceptions of a chronic timeline (U = 301.00, p = .008), consequences (U = 251.00, p = .008), and emotional representations (U = 244.50, p = .020) between children in acute treatment and children in follow-up care. Over the course of one year, children in acute treatment perceived more symptoms as part of their illness (MT1 = 3.6, SDT1 = 2.9, MT2 = 4.5, SDT2 = 3.1, n = 27, Z = -2.603, p = .009). We found expected intercorrelations between illness perception dimensions, e.g. between perception of consequences and emotional representations (rτ = .27, p = .033), and between perception of a chronic timeline and consequences (rτ = .38, p = .001). Moreover, we found confirming results regarding construct validity, as child's perceptions of symptoms correlated with their self-rated HRQoL (rτ = -.32, padj. = .014). Also parent-rated subscale on illness-specific aspects of child's HRQoL correlated with child's perception of symptoms (rτ = -.26, padj. = .016), cyclicity (rτ = -.28, padj. = .016), and consequences (rτ = -.34, padj. = .014). Acceptable internal consistency was shown for the dimensions timeline-acute/chronic and personal control. CONCLUSIONS: Parental report can now be complemented by a self-report of illness perceptions in children aged four years and older. This will allow for the further adaptation of medical and psychosocial care during and after acute cancer treatment. TRIAL REGISTRATION: The study has been pre-registered at the German Clinical Trials Register (registered 30/06/2020; DRK-S00022034) and at the Open Science Foundation ( https://osf.io/7xr6z ).

[Screening to Assess Psychosocial Follow-up Needs in Pediatric Oncology (NPO-11) for Self- and Parent-Report]. / Screening zur Einschätzung des psychosozialen Nachsorgebedarfs in der pädiatrischen Onkologie (NPO-11) für Selbst- und Elternbericht.

BACKGROUND: Children diagnosed with cancer are at increased risk for the development of psychosocial problems. Currently, no qualitative and quantitative tests are available to measure their need for psychosocial follow-up care. The NPO-11 screening was developed to tackle this issue. PATIENTS AND METHODS: 11 dichotomous items were generated to measure self- and parent-reported fear of progression, sadness, avolition, self-esteem problems, school and vocational problems, somatic complaints, emotional withdrawal, social disintegration, pseudo-maturity, parent-child conflicts, and parental conflicts. Data from N=101 parent-child dyads were obtained to validate the NPO-11. RESULTS: Self- and parent-reported items showed few missing values and response frequencies without floor or ceiling effects. Inter-rater reliability was fair to moderate. Factor analysis confirmed a single-factor model and therefore an overall NPO-11 sum score. Self- and parent-reported sum scores had sufficient to good reliability and large correlations with health-related quality of life. CONCLUSION: The NPO-11 is a screening for psychosocial needs in pediatric follow-up care with good psychometric properties. It may help to plan diagnostics and interventions for patients transitioning from in-patient to out-patient treatment.

The oracle of D-A-Ch - Results of a Delphi Survey for the development of the evidence- and consensus-based tool "My Logbook".

OBJECTIVE: The present report describes the results of four delphi surveys conducted within the quality improvement project "My Logbook" which aims to translate evidence-based standards for psychosocial care in pediatric oncology into a practical consensus-based tool. METHODS: In four consecutive delphi surveys a total of n=153 international, multi-disciplinary experts rated the content, method, and design of the different booklets of "My Logbook" which a local expert group had conceptualized. After each survey, the feedback was incorporated, and the changes were evaluated in a final consensus vote by the quality assurance panel of the PSAPOH. RESULTS: While some surveys led to a review on a page level, most booklets as a whole reached the consensus-level of approval. Over the course of the surveys, any revisions and comments were incorporated in the booklets, and approval rates increased steadily. DISCUSSION: The delphi surveys ensured the integration of multi-disciplinary, international expertise, uncovering issues such as language barriers and the need for a user manual that would not have been evident in first line . The incorporation of the input led to a continuous improvement of the tool, reflected in steadily increasing acceptance rates in the consecutive survey rounds. CONCLUSION: The incorporation of the expert input as well as the additional development of a user manual resulted in a final version of the "My Logbook" apt for the interdisciplinary application in pediatric oncology in the entire DACH-region.

[Evidence-based inpatient psychotherapy of bipolar disorders]. / Evidenzbasierte stationäre Psychotherapie bipolarer Störungen.

BACKGROUND: Although psychotherapy is an important pillar in the treatment of bipolar disorders, alongside pharmacotherapy, non-drug and complementary procedures, there is no up to date evidence synthesis for inpatient psychotherapeutic treatment and work with caregivers. OBJECTIVE: To review and evaluate the current study situation on evidence-based inpatient psychotherapy for bipolar disorders. MATERIAL AND METHODS: 1.Summary of the evidence for inpatient psychotherapy in adolescents and adults with bipolar disorders from current review articles and guidelines (German S3 guidelines, Australian, Canadian, and British NICE guidelines). 2. Systematic literature search (PRISMA) in Cochrane trials and Medline (via PubMed). 2a. Identification of original articles using the following search term: "bipolar fft" OR "bipolar ipsrt" OR "bipolar cbt" OR "bipolar cognitive remediation" OR "bipolar psychotherapy inpatient". 2b. Screening of n = 942 publications on the following inclusion criteria: randomized controlled efficacy trials, inpatient treatment/recruitment in the inpatient setting, adolescent or adult patients with bipolar disorder or caregivers. RESULTS: The guidelines recommend a combination of pharmacotherapy and psychotherapy for the treatment of patients with bipolar disorders (so far no evidence-based presentation of inpatient psychotherapy). The results from reviews and original papers are heterogeneous. Recently described evidence-based psychotherapeutic approaches for inpatient treatment are family focused therapy (FFT), interpersonal and social rhythm therapy (IPSRT) and psychoeducation. CONCLUSION: Although the current evidence is heterogeneous and further systematic studies are necessary, the results indicate that psychotherapy should be started or initiated in the inpatient setting with inclusion of caregivers.

Illness perceptions in patients and parents in paediatric oncology during acute treatment and follow-up care.

OBJECTIVE: Recent evidence suggests that illness perceptions in paediatric patients and their parents may differ, with parents holding more negative views compared to their children. Little is known about illness perceptions of very young patients and their parents. This study investigates illness perceptions in paediatric cancer patients aged 4-18 years and their parents in acute treatment or follow-up care, distinguishing patients by age (4-11, 12-18) and stage of medical treatment. METHODS: N = 45 patient-parent dyads in acute treatment and n = 95 dyads in follow-up care were examined. Parents and older children aged 12-18 years completed the Illness Perception Questionnaire-Revised (IPQ-R) and younger children aged 4-11 years were examined using an age-adapted hand puppet interview containing the IPQ-R questions. Difference scores of illness perceptions (symptoms, timeline-acute/chronic, timeline-cyclical, personal control, illness coherence, consequences, emotional representations) between children and parents were tested for significance using Wilcoxon signed-rank tests. RESULTS: Overall, parents perceived more symptoms associated with their child's illness/treatment than the children themselves. In acute treatment, younger children indicated more negative and older children more positive views regarding chronicity than parents. Younger children held less negative views on consequences, and all children reported less negative emotional representations than parents. In follow-up care, all children held less negative views on consequences and emotional representations. Older children reported less negative views on chronicity, cyclicity and illness coherence. CONCLUSION: Differences in illness perceptions of paediatric patients and their parents should be considered during and after treatment/medication and psychosocial care to support illness coping in person- and family-centred interventions.

[How good are teachers at recognising mental health issues and assistance needs in adolescents? A vignette-based study]. / Wie gut erkennen Lehrkräfte psychische Störungen und Hilfebedarfe bei Jugendlichen? Eine vignettenbasierte Studie.

INTRODUCTION: Teachers can help identify mental health issues in adolescents and act as gateway-providers by referring adolescents at risk to a mental health professional. Studies have so far investigated awareness concerning mental health issues among primary school teachers in the USA. The present study uses case vignettes to examine whether secondary school teachers in Germany can detect and assess the presence and severity of mental disorders in adolescents, and which factors predict referral to professional support services. METHODS: N=136 secondary school teachers completed an online questionnaire with case vignettes depicting students with moderate or severe internalizing and externalizing disorders. We assessed the ability to recognize mental health issues and evaluate the level of severity, worry and perceived prevalence of the problem as well as the helping behaviour among teachers. RESULTS: 66 and 75% of the teachers were able to identify mental health issues in case vignettes of externalizing and internalizing disorders, respectively. 60% and 61%, respectively, designated the mental disorder correctly as externalizing or internalizing, and the true positive rates did not differ between externalizing vs. internalizing disorders. However, moderate and externalizing disorders were identified with less precision, and recommendations to seek professional mental help were more seldom made for these disorders. DISCUSSION: The results indicate that teachers can validly and probably intuitively identify (at least severe cases of) mental disorders in their students. Given the uncertainty expressed and the substantial interest of teachers, further education and training on mental health conditions disorders in adolescents is recommended.

Illness perceptions, fear of progression and health-related quality of life during acute treatment and follow-up care in paediatric cancer patients and their parents: a cross-sectional study.

BACKGROUND: This study examines the role of illness perceptions and fear of progression (FoP) in paediatric cancer patients and their parents for patient's health-related quality of life (HRQoL), controlling for sociodemographic and medical variables. 4-18-year-old patients in acute treatment or follow-up care and one parent were examined. METHODS: N = 46 patient-parent dyads in acute treatment and n = 84 dyads in follow-up care completed measures on illness perceptions (Illness-Perceptions-Questionnaire for 12-18-year-old patients and parents or as age-adapted puppet interview for 4-11-year-old patients) and FoP (Fear-of-Progression-Questionnaire for 7-18-year-old patients and parents). Patients also completed the KINDL-R to measure HRQoL. Hierarchical multiple regression analyses were calculated. RESULTS: In acute treatment, patient's perceptions of symptoms and cyclicity of their illness explained variation in their HRQoL in addition to sociodemographic and medical variables. In follow-up care, patient's FoP and parent's perception of consequences explained additional variation in patient's HRQoL. Overall, sociodemographic and medical variables explained less variation in HRQoL in follow-up care than in acute treatment. CONCLUSIONS: Our results stress the importance of psychological factors for the well-being of paediatric cancer patients, particularly in follow-up care, where sociodemographic and medical variables play a lesser role. We recommend screening for illness perceptions and FoP during and after acute treatment to support patients and parents. Furthermore, standardized interventions focussed on changing maladaptive illness perceptions should be developed and evaluated. As parents' perceptions, thoughts, and feelings may also play an important role for the well-being of the patients, interventions should be family-focussed and include parents. Trial registration The study has been pre-registered at the German Clinical Trials Register (registered 30/06/2020; DRKS00022034) and at the Open Science Framework ( https://osf.io/3uwrx ).

Dos and Don'ts in Designing School-Based Awareness Programs for Suicide Prevention.

Background: Despite the promising evidence for the effectiveness of school-based awareness programs in decreasing the rates of suicidal thoughts and suicide attempts in young people, no guidelines on the targets and methods of safe and effective awareness programs exist. Aims: This study intends to distill recommendations for school-based suicide awareness and prevention programs from experts. Method: A three-stage Delphi survey was administered to an expert panel between November 2018 and March 2019. A total of 214 items obtained from open-ended questions and the literature were rated in two rounds. Consensus and stability were used as assessment criteria. Results: The panel consisted of 19 participants in the first and 13 in the third stage. Recommended targets included the reduction of suicide attempts, the enhancement of help-seeking and peer support, as well as the promotion of mental health literacy and life skills. Program evaluation, facilitating access to healthcare, and long-term action plans across multiple levels were among the best strategies for the prevention of adverse effects. Limitations: The study is based on opinions of a rather small number of experts. Conclusion: The promotion of help-seeking and peer support as well as facilitating access to mental health-care utilities appear pivotal for the success of school-based awareness programs.