Emotional and behavioral problems of pediatric cancer survivors and their siblings: Concordance of child self-report and parent proxy-report.

OBJECTIVE: Childhood cancer confronts families with major challenges. The study aimed at developing an empirical and multi-perspective understanding of emotional and behavioral problems of cancer survivors diagnosed with leukemia and brain tumors and their siblings. Further, the concordance between child self-report and parent proxy-report was examined. METHODS: 140 children (72 survivors, 68 siblings) and 309 parents were included in the analysis (respond rate: 34%). Patients, diagnosed with leukemia or brain tumors, and their families were surveyed on average 7.2 months after the end of intensive therapy. Outcomes were assessed using the German SDQ. Results were compared with normative samples. Data were analyzed descriptively, and group differences between survivors, siblings, and a norm sample were determined using one-factor ANOVA followed by pairwise comparisons. The concordance between the parents and children was determined by calculating Cohen's kappa coefficient. RESULTS: No differences in the self-report of survivors and their siblings were identified. Both groups reported significantly more emotional problems and more prosocial behavior than the normative sample. Although the interrater reliability between parents and children was mostly significant, low concordances were found for emotional problems, prosocial behavior (survivor/parents), and peer relationship problems (siblings/parents). CONCLUSION: The findings point out the importance of psychosocial services in regular aftercare. These should not only focus on survivors, but additionally address the siblings' needs. The low concordance between the parents' and the children's perspectives on emotional problems, prosocial behavior, and peer relationship problems suggests the inclusion of both perspectives to allow needs-based support.

Parent-reported health-related quality of life in pediatric childhood cancer survivors and factors associated with poor health-related quality of life in aftercare.

PURPOSE: Despite advances in cancer treatment, there is a prevalence of pediatric childhood cancer survivors still at risk of developing adverse disease and treatment outcomes, even after the end of treatment. The present study aimed to (1) explore how mothers and fathers assess the health-related quality of life (HRQoL) of their surviving child and (2) evaluate risk factors for poor parent-reported HRQoL in childhood cancer survivors about 2.5 years after diagnosis. METHODS: We assessed parent-reported HRQoL of 305 child and adolescent survivors < 18 years diagnosed with leukemia or tumors of central nervous system (CNS) with the KINDL-R questionnaire in a prospective observational study with a longitudinal mixed-methods design. RESULTS: In agreement with our hypotheses, our results show that fathers rate their children's HRQoL total score as well as the condition-specific domains family (p = .013, d = 0.3), friends (p = .027, d = 0.27), and disease (p = .035, d = 0.26) higher than mothers about 2.5 years after diagnosis. Taking variance of inter-individual differences due to family affiliation into account, the mixed model regression revealed significant associations between the diagnosis of CNS tumors (p = .018, 95% CI [- 7.78, - 0.75]), an older age at diagnosis, (p = .011, 95% CI [- 0.96, - 0.12]), and non-participation in rehabilitation (p = .013, 95% CI [- 10.85, - 1.28]) with poor HRQoL in children more than 2 years after being diagnosed with cancer. CONCLUSION: Based on the results, it is necessary for health care professionals to consider the differences in parental perceptions regarding children's aftercare after surviving childhood cancer. High risk patients for poor HRQoL should be detected early, and families should be offered support post-cancer diagnosis to protect survivors' HRQoL during aftercare. Further research should focus on characteristics of pediatric childhood cancer survivors and families with low participation in rehabilitation programs.

[Childhood Cancer Patients in a Family-Oriented Rehabilitation Program: Goals and Change in Physical Functioning]. / Krebskranke Kinder in der familienorientierten Rehabilitation: Ziele und Veränderung der körperlichen Leistungsfähigkeit.

PURPOSE: Childhood cancer often leads to physical and psychosocial burdens that can persist beyond the end of treatment. Family-oriented rehabilitation programs (FOR) focus on long-term consequences and support families in returning to daily life. The objectives of this study were to describe rehabilitation goals and goal attainment, to analyze the relationship between physical functioning and physical well-being and to examine predictors of changes in physical functioning during the FOR. METHODS: In a prospective observational study, statements of physicians regarding rehabilitation goals, goal achievement and physical functioning of 175 children (<18 years of age at the time of diagnosis of leukemia or central nervous system tumor) at the beginning and the end of a FOR were analyzed. The physical well-being of the patients was assessed from a parent and child perspective. Correlation coefficients were calculated to analyze the relation between physical functioning and physical well-being. Predictors of changes in physical functioning were examined with a multiple regression analysis. RESULTS: The most frequently mentioned rehabilitation goals were the increase of physical functioning and the integration into the peer group. Overall, the goal achievement ranged from 82 to 100%. Physical functioning improved significantly during the FOR. A significant positive correlation between the physician's assessment of physical functioning and the parental assessment of physical well-being could be found at the beginning of the FOR. According to the regression model, female gender of the child and a longer time since diagnosis were associated with a lower change in physical functioning. Furthermore, a higher degree of physical consequential damages was associated with a larger change. CONCLUSIONS: The 4-week multimodal rehabilitation program of the FOR addressed various physical and psychosocial burdens and was accompanied by a significant improvement of the physical functioning of childhood cancer patients. The change in physical functioning was associated with different sociodemographic and medical factors (eg, sex). The consideration of these factors could help with optimizing the program.

Fear of progression in parents of childhood cancer survivors: A dyadic data analysis.

OBJECTIVE: Fear of progression (FoP), also referred to as fear of cancer recurrence, is gaining increasing interest in survivorship research as it constitutes a great burden for patients and relatives. However, only little is known about FoP in parents of childhood cancer survivors. The objective of this study was to investigate the impact of FoP on quality of life (QoL) in parental couples. METHODS: We analyzed dyadic data of 197 couples parenting childhood cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system tumor) after the end of intensive cancer treatment. The actor-partner interdependence model calculated by structural equation modelling was used to examine actor effects (effect of one's own FoP on one's own QoL) and partner effects (effect of one's own FoP on the partner's QoL). RESULTS: Eighty-one percentage of the parents reported moderate or high FoP levels. Mothers reported higher FoP levels (p < .01) and lower overall QoL levels than fathers (p < .01). The results revealed a significantly positive intra-dyadic correlation between FoP of mothers and fathers of the same dyad (r = .431, p < .001). We found significantly negative actor effects for both mothers and fathers for the overall QoL (p < .001) as well as for several QoL subscales. No significant partner effects were found. CONCLUSIONS: Most parents reported elevated levels of FoP. Our results show that FoP in parents of childhood cancer survivors is strongly negatively associated with QoL. Parental FoP should therefore be explored in future research and needs to be targeted by health care providers.

[Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation]. / Belastungen bei Eltern krebskranker Kinder in der familienorientierten Rehabilitation.

Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation All family members experience high burden in case of paediatric cancer. Family-oriented rehabilitation (FOR) aims to improve the physical and mental situation of the families. We investigated anxiety and depression (HADS) and cancer-related burden of parents (n = 69) before and after FOR and analysed its association with quality of life of the ill children. At beginning of FOR 70 % of the parents showed moderate to high anxiety scores and 47 % moderate to high depression scores. They reported cancer-related burden such as exhaustion, cancer-related fears and a burden of family's daily life due to the cancer disease. At the end of FOR 40 % of the parents showed moderate to high anxiety scores and 30 % moderate to high depression. Cancer-related burden measured with self-developed items also decreased after FOR. Compared to age- and gender-adapted norm values, mothers show significantly higher anxiety and depression scores, whereas fathers show no differences in depression scores compared to norm values at the end of FOR. Quality of life of ill children and anxiety and depression scores in the parents are significantly associated with each other. Results of the study show that parents stabilise after FOR and improve their mental situation. However, the results also underline the need for long-term psychosocial support for all family members.

[Burden and Rehabilitation Goals of Families in Pediatric-oncological Rehabilitation]. / Belastungen und Reha-Ziele von Familien in der pädiatrisch-onkologischen Rehabilitation.

Burden and Rehabilitation Goals of Families in Pediatric-oncological Rehabilitation Survival rates of childhood cancer patients increased during the past years up to 80 %. Therefore, pediatric oncological rehabilitation is essential for reintegrating children with cancer into normal life. We performed an analysis of the current state in pediatric oncological rehabilitation with regards to the impairments of the participants and results in rehabilitation. Descriptive and content analyses of 422 medical discharge summaries were conducted. 55 % of the pediatric patients are male; the average age is 8.7 years. Children attending rehabilitation program are affected by various functional and psychosocial impairments. We identified global rehabilitation-goals such as integration in peer group and specific goals such as pain relief. According to rehabilitation physicians' opinion most patients achieve their rehabilitation-goals. Accompanying family members report a range of psychosocial burden and diverse concerns for rehabilitation. Medical discharge summaries display the complexity of family-oriented rehabilitation. We conclude that rehabilitation treatment needs to be tailored according to individual burdens and the whole family.

Physical activity and health-related quality of life in pediatric cancer patients following a 4-week inpatient rehabilitation program.

PURPOSE: Chronic health conditions and impaired quality of life are commonly experienced in childhood cancer survivors. While rehabilitation clinics support patients in coping with the disease, studies evaluating an inpatient rehabilitation program on promoting physical activity (PA) and health-related quality of life (HRQoL) are missing. METHODS: A 4-week inpatient rehabilitation program was prospectively evaluated. One hundred fifty patients with leukemia or lymphoma (N = 86), brain tumors (N = 38), and sarcomas (N = 26) were enrolled on average 17 months after cessation of acute medical treatment. PA amount and cadence (indicating the intensity of walking activity) using the StepWatch™ 3 Activity Monitor and HRQoL global and physical well-being scores using the KINDL(®) questionnaire were assessed before, immediately after, and 6 and 12 months following the program and analyzed using multiple linear mixed models. RESULTS: Significant effects on PA were only found at 12-month follow-up for amount and cadence variables (all p < 0.05). While leukemia and lymphoma patients revealed the highest PA level throughout the study, rehabilitation effects were more pronounced for cadence variables in brain tumor and sarcoma patients. The rehabilitation program had immediate (t = 4.56, p < 0.001) and sustainable effects on HRQoL global scores (6-month follow-up, t = 4.08, p < 0.001; 12-month follow-up, t = 3.13, p < 0.006). CONCLUSIONS: Immediate and sustainable increases in HRQoL indicate that a 4-week rehabilitation program is beneficial for improving psychosocial well-being, while the significant increase in PA levels could be related to general recovery as well. The lack of a control group hampers the evaluation of the rehabilitation program on promoting PA levels in pediatric cancer patients.

Reintegration into school, kindergarten and work in families of childhood cancer survivors after a family-oriented rehabilitation program.

Objective: To describe the situation of childhood cancer survivors and their parents before and one year after a family-oriented rehabilitation program (FOR) and to identify factors influencing reintegration. Methods: We included parents of children diagnosed with leukemia or central nervous system tumor. We assessed parental functioning using the functioning subscale of the Ulm Quality of Life Inventory for Parents (ULQIE) and children's school/kindergarten related quality of life (parental assessment, subscale KINDL-R). Descriptive analyses, group comparisons and multiple regression analyses on data of 285 parents of 174 children diagnosed with leukemia or central nervous system tumor. Results: Parents reported changes in their work situation (e.g., reduction of working hours) due to their child's diagnosis. Parental functioning increased significantly over time. Children's leukemia diagnosis and shorter time since the end of treatment were associated with higher functioning in parents one year after FOR. Parents reported difficulties in the child's work pace, concentration, stress resilience and empathy. The school/kindergarten-related quality of life (QoL) of the children was lower than in the general population. One year after FOR, most children reintegrated fully in school/kindergarten, partly with support (e.g., integration assistant). No significant predictors for children's reintegration were identified. Discussion: Parents and children experience major changes in their work/school/kindergarten life. One year after FOR most parents reported a reintegration of their children, however the children's school/kindergarten-related QoL remained below average compared to norm values. Even after rehabilitation families of childhood cancer survivors might benefit from psychosocial and practical support offers to support families with the reintegration into work/school/kindergarten.

Fear of progression in parents of childhood cancer survivors: prevalence and associated factors.

PURPOSE: Recent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers. METHODS: Five hundred sixteen parents of pediatric cancer survivors (aged 0-17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models. RESULTS: Significantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001). CONCLUSIONS: FoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP. IMPLICATIONS FOR CANCER SURVIVORS: Psychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.

Parents' perception of their children's process of reintegration after childhood cancer treatment.

Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration.

Returning to daily life: a qualitative interview study on parents of childhood cancer survivors in Germany.

OBJECTIVES: To investigate experiences of parents of paediatric cancer survivors in cancer-related changes in the parents' daily life (work life, family life, partner relationship and social life) during and after intensive cancer treatment and to examine the reintegration process with its impeding and facilitating factors. DESIGN: The design of this cross-sectional study involves a qualitative content analysis of semistructured interviews. SETTING: Participants were consecutively recruited in clinical settings throughout Germany. PARTICIPANTS: Forty-nine parents (59% female) of 31 cancer survivors (aged 0-17 at diagnosis of leukaemia or central nervous system tumour) were interviewed approximately 16-24 months after the end of intensive cancer treatment (eg, chemotherapy). RESULTS: During treatment, more than 70% of parents reported difficulties reconciling paid work, household and family responsibilities and caring for the ill child. Couples spent little time with each other and approximately 25% reported dispute and burden. Many parents did not have enough energy for pursuing any hobbies during treatment. However, over the long term, being faced with the child's disease also led to strengthened relationships, new priorities, improved communication, increased mutual trust and greater appreciation for daily life. Supportive social networks (family/friends/employers), a strong partner relationship prior to the diagnosis and the use of psychosocial services (eg, family-oriented rehabilitation) had a positive impact. At the time of the interview, most families had adapted well. However, reintegration took time and some parents lacked the energy required to continue life as they did before the diagnosis. CONCLUSIONS: Even though most parents successfully readjusted to a new 'normality', reintegrating into daily life after paediatric cancer treatment remains difficult. Professional psychosocial support could help families with the reintegration process. Lastly, clinical staff (eg, physicians, psychologists, social workers) should bear in mind that the burden of parents does not automatically end with the end of intensive cancer treatment.

Family-Oriented Rehabilitation (FOR) and Rehabilitation of Adolescents and Young Adults (AYA) in Pediatric Oncology.

This paper describes the function and contribution of family-oriented oncologic rehabilitation (FOR) and of oncologic rehabilitation for adolescents and young adults (AYA). The rehabilitation of children with cancer and their families and that of AYA is an integral component of pediatric oncologic treatment regimens. 32 years ago, FOR was developed in Germany and continues in a select number of highly-specialized rehabilitation centers recommended by the GPOH (Gesellschaft für Pädiatrische Onkologie und Hämatologie, Society of Pediatric Oncology and Hematology). After oncologic treatment, the patient, along with his or her family, begins an individualized rehabilitation process. The whole family participates in this process to ensure success. AYA patients are rehabilitated in small peer groups. In FOR, the immediate goal is to stabilize the family system in order to ensure maximum success for the patient. The long-term goal of FOR and AYA rehabilitation is to provide support for a return to as normal and self-determined a life as possible. Patients who suffer from chronic illnesses due to their oncologic disease and therapy (for example, a significant number of brain tumor patients) need long-term help in various areas. Here, multiple 4-week cycles of oncologic rehabilitation may be necessary throughout a patient's lifetime.

Prospective Evaluation of Postural Control and Gait in Pediatric Patients with Cancer After a 4-Week Inpatient Rehabilitation Program.

OBJECTIVE: The aim of the study was to investigate the effects of a 4-wk inpatient rehabilitation program on postural control and gait in pediatric patients with cancer. DESIGN: Eighty-eight patients with brain tumors (n = 59) and bone/soft tissue sarcomas (n = 29) were evaluated. Postural control was assessed examining the velocity of the center of pressure and single-leg stance time on a pressure distribution platform. Walk ratio, a measure of neuromotor control, was used to evaluate intervention effects on gait. RESULTS: Repeated measures analysis of variance showed improvements in postural control measures, indicated by a decrease in velocity of center of pressure of -0.4 cm/sec (F1,80 = 7.175, P = 0.009, ηp = 0.082) and increase in single-leg stance time (mean [median] = 1.1 [2.6] sec, respectively; F1,80 = 12.617, P = 0.001, ηp = 0.136). Walk ratio increased by 0.2 mm/steps per min (F1,82 = 3.766, P = 0.056, ηp = 0.044). Mean changes in dependent variables did not differ between both patient groups (P > 0.05). CONCLUSIONS: The results indicate benefits of an inpatient rehabilitation program comprising standard physical therapy as well as aquatic and hippo therapy on postural control and gait after treatment of pediatric patients with cancer.