Effects of a combined physical and psychosocial intervention program for childhood cancer patients on quality of life and psychosocial functioning: results of the QLIM randomized clinical trial.

OBJECTIVE: Although survival rates in childhood cancer have improved, prevention and reduction of late effects remain important. This study evaluates the effects of a combined physical exercise and psychosocial intervention on health-related quality of life (HrQoL) and psychosocial functioning in childhood cancer patients. METHODS: In this multicenter randomized controlled trial, cancer patients (aged 8-18 years) and their parents filled in questionnaires on HrQoL, depressive symptoms, behavioral problems, and self-esteem. Measurements were conducted at baseline, shortly after the 12-week intervention period and 12 months after baseline. Generalized estimating equations analyses were performed to assess short-term and long-term psychosocial effects. RESULTS: Of the 174 eligible patients, 68 (39.1%) participated. The intervention group consisted of 30 participants at baseline [mean age 13.0 (SD 3.0) years; 53% male], 26 at short-term and 22 at long-term follow-up. The 'care as usual' control group consisted of 38 participants at baseline [mean age 12.6 (SD 3.1) years; 53% male], 33 at short-term and 31 at long-term follow-up. Overall, the intervention did not improve psychosocial functioning and HrQoL. According to parent-proxy reports, the intervention leads to a greater improvement on pain-related HrQoL on both the short (ß = 13.4; 95% CI: 3.0; 23.8) and long term (ß = 13.0; 95% CI: 1.6; 24.4) and to greater improvement on procedural anxiety immediately after the intervention (ß = 12.6; 95% CI: 1.9; 23.3). CONCLUSION: A combined physical and psychosocial training for children with cancer did not have effects on HrQoL or psychosocial functioning, with exception of modest positive effects on parent-reported pain and procedural anxiety Copyright © 2015 John Wiley & Sons, Ltd.

Talking about Death with Children with Incurable Cancer: Perspectives from Parents.

OBJECTIVE: To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer. STUDY DESIGN: We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach. RESULTS: Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death. CONCLUSION: Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.

Applicability and evaluation of a psychosocial intervention program for childhood cancer patients.

PURPOSE: The purpose of this study is to explore the applicability of a psychosocial intervention in childhood cancer patients. METHODS: This individualized structured psychosocial program to enhance social-emotional functioning and coping with disease-related effects includes six sessions for children and two sessions for parents. This program was part of a combined intervention with physical exercise. Questionnaires are used to evaluate completion of the psychosocial intervention, coping and satisfaction with the psychosocial intervention by patients and psychologists, and ranking of the individual topics by patients, parents, and psychologists. RESULTS: Of the 30 patients (mean age 13.0 (SD 3.0); 53.3 % male; 30 % still on treatment) who participated in the psychosocial intervention, two dropped out due to medical complications and one due to lack of time; 90 % completed the psychosocial intervention. Overall, patients liked participation in the intervention (4.2 on a 5-point scale; SD 0.8) and were positive about the psychologists (8.1 on a 10-point scale; SD 1.3). Psychologists rated the intervention on several points (e.g., clarity of the manual and content of the intervention), and mean scores ranged from 7.1 (SD 1.1) to 8.6 (SD 0.9) on 10-point scales. Minor adaptations were suggested by patients and psychologists, including customizing according to age and a more patient-tailored approach. CONCLUSION: This psychosocial intervention for childhood cancer patients appears to be applicable. Future studies need to establish whether this intervention combined with a physical exercise intervention actually improves psychosocial functioning of childhood cancer patients. When proven effective, this combined intervention can be offered to childhood cancer patients and may enhance their physical health and quality of life.

Factors influencing childhood cancer patients to participate in a combined physical and psychosocial intervention program: Quality of Life in Motion.

BACKGROUND: For a multi-center randomized trial investigating the effects of a 12-week physical and psychosocial intervention program for children with cancer, we invited 174 patients (8-18 years old) on treatment or within 1 year after treatment; about 40% participated. Reasons for non-participation were investigated. METHODS: Eligible patients received written and verbal information about the study. Those declining to participate were asked to complete questionnaires concerning: reasons for non-participation, daily physical activity, health-related quality of life (HrQoL), and behavioral problems. Participants completed the same questionnaires at baseline (excluding 'reasons for non-participation'). RESULTS: Of 174 eligible patients, 106 did not participate; of these, 61 (57.5%) completed the one-time survey. The main reasons for non-participation as reported by the parents were 'too time consuming' and 'participation is too demanding for my child', while children most frequently reported 'too time consuming' and 'already frequently engaged in sports'. No differences between participants and non-participants were found for age, HrQoL, parental-reported behavior problems, sport participation, school type, BMI, and perceived health. A greater distance from home to hospital resulted in reduced participation (ß: -0.02; p = 0.01). Non-participants rated their fitness level higher (p = 0.03). Participating children (11-18 years old) reported more behavioral problems (p = 0.02), in particular internalizing problems (p = 0.06). CONCLUSIONS: Participation of childhood cancer patients in an intensive physical and psychosocial intervention program seems related to the burden of the intervention and the travel distance from home to hospital. In general, non-participants rated their fitness level higher compared with participants. Patients with more (internalizing) behavioral problems seem more likely to participate in the study.

Parents' experiences of pediatric palliative care and the impact on long-term parental grief.

CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement) and symptom management during the pediatric palliative phase, and to investigate the influence on long-term grief in parents who lost a child to cancer. METHODS: A total of 89 parents of 57 children who died of cancer between 2000 and 2004 participated in this retrospective cross-sectional study by completing a set of questionnaires measuring grief (Inventory of Traumatic Grief), parents' perceptions of the interaction with health care professionals (communication, continuity of care, and parental involvement), and symptom management during the palliative phase. Care was assessed on a five point Likert scale (1=disagree and 5=agree). RESULTS: Parents highly rated communication (4.6±0.6), continuity of care (4.3±0.6), and parental involvement (4.6±0.7) during the palliative phase. Parents' most often reported physical and psychological symptoms of their child during the palliative phase were fatigue (75%), pain (74%), anxiety to be alone (52%), and anger (48%). Higher ratings of parents on communication (ß=-9.08, P=0.03) and continuity of care (ß=-11.74, P=0.01) were associated with lower levels of long-term parental grief. The severity of the child's dyspnea (ß=2.96, P=0.05), anxiety to be alone (ß=4.52, P<0.01), anxiety about the future (ß=5.02, P<0.01), anger (ß=4.90, P<0.01), and uncontrolled pain (ß=6.60, P<0.01) were associated with higher levels of long-term parental grief. Multivariate models combining the interaction with health care professionals and symptom management showed a significant influence of both aspects on long-term parental grief. CONCLUSION: Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.

Functional outcome after low-grade astrocytoma treatment in childhood.

BACKGROUND: The relatively high survival rate of patients with low-grade astrocytoma necessitates increasing attention to physical and psychosocial outcomes. The objective of the current study was to investigate functional outcomes among children who were treated for low-grade or pilocytic astrocytoma in different areas of the brain. METHODS: Functional outcomes were evaluated in the following domains: impairments, disabilities, handicaps, and quality of life (QOL). In a consecutive series, 38 children were included. Follow-up ranged from 3 years and 7 months to 11 years and 4 months after diagnosis. RESULTS: Approximately 61% of children had impairments and 10% had a severe disability. Handicaps were found in the domains of relationships, school, and behavior. Children who were treated for supratentorial tumors required significantly more special education, and children who were treated for infratentorial tumors had significantly more behavioral and social problems. QOL was decreased significantly in all domains except emotions. Children who had a diagnosis in adolescence reported a lower QOL in social functioning compared with younger children. Data analysis revealed that some deficits suddenly became apparent years after diagnosis. CONCLUSIONS: At long-term follow-up, children who had low-grade or pilocytic astrocytomas were found to have poor functional outcomes, depending on tumor site, age, and recurrence. Children without deficits may develop severe cognitive, social, and behavioral deficits years after diagnosis, because of the phenomenon of "growing into deficit." Therefore, the authors suggest a long-term follow-up of children who are treated for low-grade or pilocytic astrocytomas at a young age to detect and subsequently offer support focused on the medical and cognitive impairments as well as on the behavioral and social consequences of their disease.