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Background and AimsA chronic feeling of fatigue occurs in up to 85% of childhood cancer survivors (CCS). This phenomenon has a detrimental effect on quality of life, reintegration in daily life activities and psychosocial functioning of the patient. Therefore, it is important to elucidate potential individual risk and protective factors. MethodsCCS who were treated in the University Hospital of Leuven, completed two annual questionnaires on cancer-related distress (fear of cancer recurrence and post-traumatic stress, resilience and fatigue). Associations between distress and fatigue levels were examined by performing cross-lagged panel analyses. Resilience was included as a potential moderator. These models included all within-time associations, stability paths, and cross-lagged paths. Gender and time since diagnosis were included as covariates. ResultsIn total, 110 CCS participated in this study, aged 14-25 years (average time since diagnosis 12.2 years; 41.8% boys; diagnosed with leukemia/lymphoma [49%], solid tumor [15%], brain tumor [16%] or other [20%]). Fear of cancer recurrence and post-traumatic stress at baseline positively predicted fatigue 1 year later. Cross-lagged panel analyses showed that resilience did not buffer the effect of fear of cancer recurrence on fatigue, in contrary to our expectations. Stability coefficients were high for all study variables. ConclusionThis study indicates associations between cancer-related distress (fear of cancer recurrence and post-traumatic stress), resilience and cancer-related fatigue over time in CCS. Interventions to improve fatigue levels could be focusing on both tackling cancer-related distress, while improving resilience levels as well.

Background Adolescent and emerging adult survivors of childhood cancer generally adjust well psychologically similar to their peers. Nevertheless, some survivors are at greater risk for developing psychological and physical difficulties. To shed light on the psychosocial functioning of adolescent and emerging adult survivors of childhood cancer, personal identity formation and its interplay with general and cancer-specific functioning need to be investigated. Purpose To examine the longitudinal associations linking identity formation to general and cancer-specific functioning in adolescent and emerging adult childhood cancer survivors using three-wave data over a 2-year period. Methods Dutch-speaking survivors (at baseline: n = 125; 53% female; age range: 14–25 years) treated at the pediatric oncology department of the University Hospitals Leuven (Belgium), completed self-report questionnaires at three annual timepoints. Directionality of effects and correlated changes were examined using cross-lagged structural equation modeling. Results Regarding general functioning, bidirectional effects occurred. Life satisfaction positively predicted identity synthesis and both life satisfaction and good physical functioning negatively predicted identity confusion over time. Identity synthesis, in turn, positively predicted life satisfaction and identity confusion negatively predicted good physical functioning over time. Regarding cancer-specific functioning, mainly unidirectional effects occurred. Post-traumatic stress symptoms negatively predicted identity synthesis and positively predicted identity confusion over time, whereas the reverse pattern of associations was found for benefit finding. Several correlated changes were found linking identity formation and psychosocial functioning as well. Conclusions The present study uncovered clinically meaningful pathways linking identity formation to psychosocial functioning over time in adolescents and emerging adults who survived childhood cancer.

OBJECTIVE: Identity formation was investigated in adolescent and emerging adult cancer survivors from a (neo-)Eriksonian perspective by comparing survivors to control participants. In survivors, associations between identity and clinical/demographical variables and general and illness-specific functioning were investigated. DESIGN: Childhood cancer survivors (n = 125; Mage: 19.54; 47% male) were matched on age and gender with healthy controls (2:1). MAIN OUTCOME MEASURES: All participants completed identity questionnaires. Survivors reported on demographics, well-being (depressive symptoms, life satisfaction, physical functioning), and illness-specific experiences (PTSS, illness centrality, cancer self-identity, benefit finding, cancer-related worries). Medical records provided clinical information. RESULTS: Survivors did not differ from controls on identity synthesis or confusion or on the identity statuses resulting from cluster analysis on the identity dimensions (achievement, foreclosure, moratorium, diffusion). Identity synthesis related to better well-being and illness experiences, whereas confusion related to worse well-being and illness experiences. Youth in moratorium and diffusion reported lower well-being and more negative illness experiences. Associations between identity and demographical and clinical characteristics were inconsistent. CONCLUSIONS: This study revealed no significant differences in identity formation between cancer survivors and controls. However, survivors who struggle in their identity quest should be identified as they are at risk for poorer well-being and negative illness experiences. ispartof: PSYCHOLOGY & HEALTH vol:38 issue:1 pages:55-72 ispartof: location:England status: published

Background Neuromuscular disorders (NMD) are intrusive medical conditions with implications for psychosocial development. Objectives This paper explores illness perceptions and illness identity dimensions of youth with NMD. First, we compare illness identity outcomes and illness perceptions of NMD patients with a comparison group of adolescents with type 1 diabetes mellitus (DM). Second, we report about the relationships between NMD-related variables and illness perceptions and illness identity. Methods Scores on the Brief Illness Perception Questionnaire and the Illness Identity Questionnaire were compared between a group of NMD patients ( N = 59; 12–22 years) and an age- and gender-matched group of DM patients ( N = 118). NMD-related variables included time since diagnosis, prognosis, wheelchair use, and physical limitations. Results Youth with NMD scored significantly higher on two of the four illness identity dimensions than youth with DM. NMD patients reported significantly less positive illness perceptions, experienced more physical symptoms, and had a lower score on understanding of their illness. Within the NMD group, wheelchair-users have a better understanding of their disease than those who are not wheelchair-bound. Conclusions The present study is the first to investigate illness identity and illness perceptions in NMD. More research is needed to provide insight in the identity formation process of the growing group of adolescents with NMDs.

Long-term neurocognitive difficulties in children treated for a brain tumor are well documented and known to be affected by treatment. However, longitudinal studies of these neurocognitive difficulties are scarce. In the present study, we investigated the impact of radiotherapy (RT) on the evolution of neurocognition between different consecutive time points after diagnosis, and throughout treatment and survivorship. This study included 69 children diagnosed with a brain tumor at the University Hospitals Leuven who completed a comprehensive neuropsychological test battery (intelligence, memory, visuomotor functioning, and QoL) on at least three consecutive time points (2-year interval). Of all patients, 40 completed the test battery at 4 time points. The first assessment was conducted at the earliest possible moment after diagnosis and before the start of any adjuvant therapy. Mean age at diagnosis and first assessment were 7.75 and 7.92 years, respectively. The most common diagnoses were pilocytic astrocytoma (n=33) and medulloblastoma (n=11). 29.0% of the children received local RT and 15.9% received craniospinal RT. A repeated measures analysis with cranial irradiation (no, focal, craniospinal) as between-subjects factor and age at diagnosis as covariate demonstrated a significant interaction effect between time and type of irradiation for both overall intelligence (p=0.007) and QoL (p=0.006) for children with three and four assessments. Children who received craniospinal irradiation demonstrated a significant decline in overall intelligence and a significant worsening of QoL. For the non-irradiated group, an improvement of QoL was observed. For processing speed, a significant time effect was found for children with three and four assessments (p