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.

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.

[Needs of Children with Oncological Diseases: Psychometric Review of the Survey Instrument "KiWuF-PädOnk" and First Results]. / Bedürfnisse onkologisch erkrankter Kinder: Psychometrische Überprüfung des Erhebungsinstruments "KiWuF-PädOnk" und erste Ergebnisse.

In der vorliegenden Querschnittstudie wurde ein neu konzipierter Bedürfnisfragebogen für 8- bis 13-jährige Krebspatienten psychometrisch überprüft (N=117). Auf der Grundlage einer explorativen Faktorenanalyse wurden 4 Skalen mit insgesamt 19 Items gebildet. Die interne Konsistenz des Fragebogens ist zufriedenstellend. Die Teilnehmenden äußerten ein starkes Bedürfnis nach sozialer Teilhabe, Sicherheit und Kontrollerleben sowie nach Normalität. Der KiWuF-PädOnk liefert Informationen zu Bedürfnissen aus Patientensicht und fördert somit eine individuumszentrierte psychosoziale Versorgung. In the present cross-sectional study, a newly designed needs questionnaire for 8- to 13-year-old cancer patients was psychometrically tested (N=117). Based on an exploratory factor analysis, 4 scales with a total of 19 items were formed. The internal consistency of the questionnaire is satisfactory. Participants expressed a strong need for social participation, safety and experience of control, and normality. The KiWuF-PädOnk provides information on needs from the patient's perspective and thus promotes individual-centered psychosocial care.

Social inequalities in the participation and activity of children and adolescents with leukemia, brain tumors, and sarcomas (SUPATEEN): a protocol for a multicenter longitudinal prospective observational study.

BACKGROUND: About 2000 children and adolescents under the age of 18 are diagnosed with cancer each year in Germany. Because of current medical treatment methods, a high survival rate can be reached for many types of the disease. Nevertheless, patients face a number of long-term effects related to the treatment. As a result, physical and psychological consequences have increasingly become the focus of research in recent years. Social dimensions of health have received little attention in health services research in oncology so far. Yet, there are no robust results that allow an estimation of whether and to what extent the disease and treatment impair the participation of children and adolescents and which factors mediate this effect. Social participation is of great importance especially because interactions with peers and experiences in different areas of life are essential for the development of children and adolescents. METHODS: Data are collected in a longitudinal, prospective, observational multicenter study. For this purpose, all patients and their parents who are being treated for cancer in one of the participating clinics throughout Germany will be interviewed within the first month after diagnosis (t1), after completion of intensive treatment (t2) and half a year after the end of intensive treatment (t3) using standardized questionnaires. Analysis will be done by descriptive and multivariate methods. DISCUSSION: The results can be used to identify children and adolescents in high-risk situations at an early stage in order to be able to initiate interventions tailored to the needs. Such tailored interventions will finally reduce the risk of impairments in the participation of children and adolescents and increase quality of life. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04101123.

Psychometric Properties of the Fear of Progression Questionnaire for Children (FoP-Q-SF/C).

BACKGROUND: Recent research shows that parents of children suffer from fear of progression (FoP), the fear of further disease progression. It is most possible that children also develop FoP, which could impair treatment and psychological health. The aim of this study is to adapt the adult's version of the Fear of Progression Questionnaire - Short Form (FoP-Q-SF) for children and to examine the psychometric properties in pediatric cancer patients. PATIENTS: 32 pediatric cancer patients between 10 and 18 years with different diagnoses and in different treatment states participated in this study. METHOD: In the cross-sectional study participants completed the adapted Fear of Progression Questionnaire - Short Form for Children (FoP-Q-SF/C) and self-report measures assessing quality of life, depression, fear and coping satisfaction. RESULTS: The questionnaire (FoP-Q-SF/C) showed adequate psychometric properties (Cronbachs α=0.86) and good results for construct validity. Significant medium to large correlations of children's FoP was observed with quality of life (r=- 0.37), depression (r=0.52), fear (r=0.33 - 0.76), and satisfaction with coping (r=- 0.44). One-fifth of the sample was classified as having high FoP with values over 37. CONCLUSIONS: The FoP-Q-SF/C is a short, economic questionnaire that is applicable in children with cancer. Clinicians can use the questionnaire to explore specific fear and the need for psychosocial support. Further research for specific treatment approaches for FoP in pediatric cancer patients are warranted. HINTERGRUND: Aktuelle Forschungsergebnisse zeigen, dass Eltern krebskranker Kinder unter Progredienzangst (PA), der Angst vor dem Fortschreiten einer Erkrankung leiden. Es scheint naheliegend, dass auch Kinder diese Ängste entwickeln, was die Behandlung und die psychologische Gesundheit beeinflussen kann. Ziel der Studie ist die Adaption des Progredienzangst-Fragebogens (FoP-Q-SF) für Kinder und die Ermittlung der psychometrischen Eigenschaften für pädiatrische Onkologiepatienten. PATIENTEN: 32 pädiatrische Krebspatienten zwischen 10 und 18 Jahren mit unterschiedlichen Krebsdiagnosen und in unterschiedlichen Behandlungsstadien nahmen an der Studie teil. METHODE: In der Querschnittsstudie beantworteten die Teilnehmenden den adaptierten Progredienzangst-Fragebogen-Kurzversion für Kinder (FoP-Q-SF/C) und Selbstbeantwortungsfragebögen zu Lebensqualität, Depression, Angst und Copingzufriedenheit. ERGEBNISSE: Der Fragebogen (FoP-Q-SF/C) zeigte adäquate psychometrische Eigenschaften (Cronbachs α=0,86) und Konstrukvalidität. Signifikante Korrelationen wurden zwischen Progredienzangst und Lebensqualität (r=- 0,37), Depression (r=0,52), Angst (r=0,33-0,76), und Copingzufriedenheit (r=- 0,44) gefunden. Ein Fünftel der Stichprobe zeigte hohe Progredienzangstwerte mit Werten über 37. SCHLUSSFOLGERUNG: Der FoP-Q-SF/C ist ein kurzer, ökonomischer Fragebogen, der für krebskranke Kinder passend ist. Kliniker können den Fragebogen einsetzen, um PA und die Notwendigkeit von psychosozialer Unterstützung zu erfassen. Weitere Forschungsarbeiten für spezifische Behandlungsansätze von PA in der pädiatrischen Onkologie sind wünschenswert.

Individual and Dyadic Coping and Fear of Progression in Mothers and Fathers of Children with Hematologic Cancer.

This study investigated the association of individual and dyadic coping strategies with fear of progression (FoP) in mothers and fathers of children with hematologic cancer. Parental couples (N = 44) whose children had been diagnosed with hematologic cancer were recruited at a university hospital and a rehabilitation clinic in Germany between 03/2017 and 08/2017. Data included parents' self-report on FoP (Fear of Progression Questionnaire-parent version, FoP-Q-SF/PR), individual coping (Coping Health Inventory for Parents, CHIP-D), and dyadic coping (Dyadic Coping Inventory, DCI). Statistical analyses were carried out for mothers and fathers individually as well as for parental couples using dyadic data analyses (e.g., actor-partner interdependence model, APIM). Individual and dyadic coping strategies were significantly correlated with FoP in mothers, but not in fathers. Fathers' evaluation of the couple's dyadic coping significantly predicted mothers' FoP. The more frequent use of familial integration (CHIP-D FAM) and maintaining social support (CHIP-D SUP) as well as a better evaluation of their partners' dyadic coping was significantly associated with lower FoP in mothers. Differences in individual and dyadic coping in parental couples were not associated with FoP. Individual and dyadic coping strategies should be addressed in the psychosocial care of mothers and fathers of children with hematologic cancer. Study results support the benefits of involving fathers in psychosocial interventions, for example, in couple-based interventions that acknowledge interpersonal effects of coping on FoP. Future research should further explore coping strategies applied by fathers of children with hematologic cancer for the regulation of FoP.

Este estudio investigó la asociación de estrategias de afrontamiento individual y diádico con el miedo a la progresión (FoP por sus siglas en inglés) en madres y padres de niños con cáncer hematológico. Se reclutaron parejas de padres (N = 44) cuyos niños recibieron una diagnosis de cáncer hematológico en un hospital universitario y una clínica de rehabilitación en Alemania entre marzo de 2017 y agosto de 2017. Los datos incluyeron autoinformes de los padres sobre FoP (Cuestionario de miedo a la progresión, versión para padres, FoP-Q-SF/PR), afrontamiento individual (Inventario de salud de afrontamiento para padres, CHIP-D) y afrontamiento diádico (Inventario de afrontamiento diádico, DCI). Se realizaron análisis estadísticos para madres y padres de manera individual, así como para parejas de padres usando análisis de datos diádicos, (p.ej., Modelo de interdependencia actor-pareja, APIM). Las estrategias de afrontamiento individual y diádico tuvieron una correlación significativa con el FoP en las madres, pero no en los padres. La evaluación por los padres del afrontamiento diádico de la pareja predijo significativamente el FoP de las madres. El uso más frecuente de integración familiar (CHIP-D FAM) y mantenimiento de apoyo social (CHIP-D SUP), así como una mejor evaluación del afrontamiento diádico de sus parejas se asoció significativamente con un FoP más bajo en las madres. Las diferencias en el afrontamiento individual y diádico en parejas de padres no se asociaron al FoP. Las estrategias de afrontamiento individual y diádico deben ser enfrentadas durante el cuidado psicosocial de madres y padres de niños con cáncer hematológico. Los resultados del estudio respaldan los beneficios de involucrar a los padres en intervenciones psicosociales, es decir, en intervenciones basadas en parejas que reconocen los efectos interpersonales del afrontamiento en FoP. Investigaciones futuras deberán explorar más las estrategias de afrontamiento empleadas por los padres de niños con cáncer hematológico para regular el FoP.

[Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities]. / Evaluation eines manualisierten Gruppenprogramms für Geschwister von erkrankten oder behinderten Kindern.

Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities This study evaluates a manualized group program for siblings of children with life-threatening/life-limiting diseases or disabilities. The program aims to activate resources and to reduce emotional and behavioral problems, using cognitive-behavioral methods and experience-based interventions. In this multi-center study, 13 GeschwisterTREFFs were conducted by 11 study sites in Germany. Prior to and after the intervention 97 siblings aged 7 to 14 years and their parents were examined with standardized questionnaires. At baseline, the siblings of children with diseases or disabilities showed significant more emotional and behavioral problems compared to the respective norm samples. After the intervention, the siblings reported declined problem behavior scores that were mostly in the range of the particular norm values. Furthermore, the children indicated a significant improvement of self-esteem, self-efficacy, school competences and relations to their siblings. However, parents reported more problem behavior and less health-related quality of life of their children at both assessments. The present multi-center study showed the interventions' feasibility in different settings and confirmed expected improvements of target variables during the intervention period. Randomized-controlled trails are warranted to verify our results.

[Physical Activity Promotion and Exercise in Pediatric Oncology - Structural Requirements and Financing Options Based on the Leipzig Movement Concept]. / Bewegungsförderung in der Pädiatrischen Onkologie ­ Strukturelle Voraussetzungen und Finanzierungsmöglichkeiten anhand des Leipziger Bewegungskonzepts.

Regular physical activity is an important requirement for the development and the general health in childhood and adolescence. However, patients during and after treatment for childhood cancer show high levels of physical inactivity, and only a marginal extent of physical activity. In addition to the negative side effects of treatment, this lack of physical activity and exertion has further negative implications for their health, such as decrease in physical performance and health related quality of life. In order to reduce these negative effects and provide access to regular physical activity for children and adolescents with cancer, childhood cancer patients should participate in targeted physical exercise therapy sessions at the treating hospital. Physical activity promotion for children and adolescents with cancer is an effective measure to enhance or preserve functional mobility, physical performance and health related quality of life. Both the behavioral level (person) and the setting (environment) should be taken into account for a sustainable implementation of physical activity promotion in the treatment of childhood cancer. The Leipzig Movement Concept promotes physical activity both during and after treatment for childhood cancer. On the basis of the modular concept, factors influencing physical activity in childhood cancer, alongside requirements for the successful and long-term implementation of physical activity programs and clinical exercise therapy are described. Furthermore financing options, based on Book V § 43 of the German Social Welfare Code, are presented.

Validation of the German version of the late adolescence and young adulthood survivorship-related quality of life measure (LAYA-SRQL).

BACKGROUND: Cancer has adverse effects on patient's quality of life. As such, measuring quality of life (QoL) has become an integral part of psycho-oncological health care. Because adolescent and young adult patients have different needs in contrast to children and older cancer patients, instruments for adequately measuring QoL of cancer survivors in this age range are essential. As there is not a corresponding instrument in Germany, we aimed to validate the German version of the Late Adolescence and Young Adulthood Survivorship-Related Quality of Life Measure (LAYA-SRQL), a 30-item questionnaire covering 10 dimensions related to QoL. METHODS: The LAYA-SRQL was translated into German following state-of-the-art criteria. We enrolled 234 adolescent and young adult (AYA) cancer patients with different tumour entities aged between 16 and 39 years old. Factorial structure was tested using confirmatory factor analysis. Internal consistency was determined by Cronbach's α. The Short Form Survey quality of life questionnaire (SF-12v2) was used to examine convergent validity. RESULTS: The 10-factor structure of the LAYA-SRQL was confirmed in the German sample, and the model shows high values of fit indicators: χ2 = 723.32 (df = 360, p < 0.001), CFI = 0.92, TLI = 0.90, SRMR = 0.074, RMSEA = 0.066). Subscales showed acceptable to excellent internal consistencies with Cronbach's α > 0.70 and total Cronbach's α of 0.93. Convergent validity was demonstrated by high positive correlations between the LAYA-SRQL and the physical (r = 0.45) and mental component (r = 0.65) of the SF-12v2. CONCLUSIONS: The German version of the LAYA-SRQL showed good psychometric properties. The instrument proved to be a highly reliable and valid instrument that can be recommended for use in the follow-up care of AYAs and for clinical research.

Fear of Progression in Parents of Children with Cancer: Results of An Online Expert Survey in Pediatric Oncology.

BACKGROUND: Fear of Progression (FoP) is a commonly reported psychological strain in parents of children with cancer. This expert survey investigates how professionals in pediatric oncology estimate the burden and consequences of FoP in parents and how they assess and treat parental FoP. METHOD: N=77 professionals in pediatric oncology (members and associates of the Psychosocial Association in Paediatric Oncology and Haematology, PSAPOH) were examined in an online survey with a self-developed questionnaire. Data were analyzed via descriptive statistics and qualitative content analysis. RESULTS: Three of four experts in clinical practice were (very) often confronted with parental FoP which was associated with more negative (e. g., psychosomatic reactions, reduced family functioning) than positive (e. g., active illness processing) consequences. N=40 experts indicated that they mainly assess parents' anxiety via clinical judgment (72.5%) and/or according to ICD-10/DSM-5 diagnostic criteria (37.5%), whereas standardized methods such as psycho-oncological questionnaires (12.5%) were applied less often. Only n=6 experts named a specific diagnostic approach to assess parental FoP. The most common treatment approaches for FoP were supportive counseling (74.0%), psychotherapy (59.7%) and/or relaxation techniques (55.8%). DISCUSSION: Parental FoP is frequently perceived by experts in clinical practice. A standardized diagnostic procedure would increase comparability of diagnostic judgments and harmonize treatment indications.

[Focus on Siblings of Children with Chronic Illness or Disability - A Family Oriented Counselling Program]. / Geschwister chronisch kranker und behinderter Kinder im Fokus - ein familienorientiertes Beratungskonzept.

In the psychosocial support of families with a chronically ill or disabled child siblings are increasingly addressed as a target group for prevention and rehabilitation projects intending to reduce the risk for adverse health consequences. The following article presents a childfocused approach to family counselling as a short-term intervention. Ten flexibly applicable counselling core points covering commonly reported problems of affected siblings and their families are available - including the communication about the disease within the family or the expression of the sibling's feelings and needs. For this purpose an approach in specific counselling sessions has been determined which is used similarly by adept child and youth psychotherapists. The counselling approach is founded theoretically. Furthermore, the counselling approach provides guidance for the structured approach in the diagnosis of potential difficulties, the choice of core points and setting, the closure of counseling sessions as well as the recommendation of additional programs.

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 ).

Psychometric properties of the Fear of Progression Questionnaire for parents of children with cancer (FoP-Q-SF/PR).

OBJECTIVE: Psychometric properties of the Fear of Progression Questionnaire - Short Form (FoP-Q-SF) were shown to be good in samples of adult cancer patients and their partners but have so far not been investigated in parents of children with cancer. This study therefore aimed to examine psychometric properties of the previously adapted parent version of the Fear of Progression Questionnaire (FoP-Q-SF/PR) in pediatric oncology. METHODS: N=181 parents (119 mothers, 62 fathers) of n=128 children with diverse cancer entities, up to ten years after diagnosis were recruited at six hospitals and six registered parent associations in Germany and Austria between 06/2015 and 05/2016 (cross-sectional design). Parents provided medical information about their child and completed standardized questionnaires (Hospital Anxiety and Depression Scale, HADS; State-Trait Anxiety Inventory, STAI; Impact of Event Scale-Revised, IES-R; Ulm Quality of Life Inventory for Parents, ULQIE; Giessen Physical Complaints Inventory for children and adolescents, GBB-KJ). RESULTS: Exploratory factor analysis yielded two factors (50.2% explained variance) and internal consistency was good (Cronbach's α=0.89). Significant medium to large correlations of the FoP-Q-SF/PR were observed with anxiety (HADS: r=0.68; STAI: r=0.60-0.61), depression (HADS: r=0.58), posttraumatic stress (IES-R: r=0.42-0.64) and quality of life (ULQIE: r=-0.59). The FoP-Q-SF/PR discriminated between sub-groups, e.g. parents with and without clinical anxiety levels (Cohen's d=1.26). CONCLUSION: The FoP-Q-SF/PR demonstrated good reliability and validity for parents of children with cancer. The FoP-Q-SF/PR is a feasible screening instrument, which is suitable for the assessment of parental FoP in pediatric oncology.