Online cognitive-behavioral group intervention for young adult survivors of childhood cancer: a pilot study.

BACKGROUND: Young adult childhood cancer survivors (YACCS) are a vulnerable group in need of psychosocial support, but tailored interventions are lacking. AIM: To examine feasibility and satisfaction, and to explore preliminary effectiveness of an online group intervention (Op Koers Online for YACCS) aimed at teaching active coping skills and providing peer-contact, thereby reducing and preventing psychosocial problems in YACCS. The intervention is based on psycho-education, cognitive behavioral therapy, and aspects of acceptance and commitment therapy. METHODS: YACCS completed questionnaires pre- and post-intervention. Feasibility was based on attendance, drop-out, and an evaluation questionnaire was administered to assess satisfaction. Preliminary effectiveness was evaluated with the Mastery Scale, Illness Cognition Questionnaire, Distress Thermometer, Impact of Cancer - Childhood Survivors, and Pediatric Quality of Life Inventory. Preliminary effectiveness was investigated by testing differences on the psychosocial outcomes (coping and psychosocial wellbeing) between T0 and T1 within respondents, using paired samples t tests and Cohen's d. RESULTS: 10 YACCS participated in the intervention and completed all questionnaires. There was no drop-out; 90% of participants attended five out of six sessions. Overall, participants were satisfied with the intervention; 7.6 on a 0-10 scale. Distress (Cohen's d=-.6, p=.030) and feelings of helplessness (Cohen's d=-.8, p=.001) reduced from T0 to T1, while self-efficacy (Cohen's d=.8, p=.013,) improved. Other outcomes displayed small effects, but did not change significantly. CONCLUSIONS: This first, small pilot study showed short-term decrease in distress and feelings of helplessness and improvement of self-efficacy. Op Koers Online was positively evaluated by YACCS and course leaders, filling a gap in psychosocial services for YACCS.

Psychosocial developmental milestones of young adult survivors of childhood cancer.

PURPOSE: The study aimed to compare the psychosocial development of young adult survivors of childhood cancer (YACCS) with a norm group of young adults from the general population. METHODS: From 2017 to 2020, 558 YACCS (18-30 years, 51% female, 10.9% CNS cancer) who participated in the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort (diagnosed 1963-2001) part 2 completed the Course of Life Questionnaire (CoLQ), assessing the achievement of milestones. Items were grouped into the scales autonomy, psychosexual, and social development. Differences between YACCS and norm group were examined with ANOVA and Cohen's d (CoLQ scales) and with logistic regression analysis and odds ratio (OR) (CoLQ items), for the total group and YACCS of CNS cancer. RESULTS: The total group of YACCS did not report a less favorable psychosocial development than the norm group. YACCS of CNS cancer scored lower than the norm group (p < 0.001) on the scales autonomy (d = - 0.36) and psychosexual (d = - 0.46). Additionally, on half of the items of autonomy (0.25 ≤ OR ≤ 0.34), psychosexual (0.30 ≤ OR ≤ 0.48), and social (0.23 ≤ OR ≤ 0.47) development, YACCS of CNS cancer were less likely (p < 0.01) than the norm group to have achieved the milestones. CONCLUSION: Overall, psychosocial development of YACCS was as favorable as the norm, but YACCS of CNS cancer were at risk of an unfavorable psychosocial development in all domains. Monitoring psychosocial development should be included in the standards of psychosocial care, especially for CNS cancer patients and survivors, to be able to trace delay. Personalized interventions should be offered to improve the psychosocial development in an early stage.

Increased health-related quality of life impairments of male and female survivors of childhood cancer: DCCSS LATER 2 psycho-oncology study.

BACKGROUND: The objective of this study was to compare the health-related quality of life (HRQOL) of Dutch adult male and female childhood cancer survivors (CCSs) to general population references and to study medical determinants. METHODS: CCSs from the Dutch Childhood Cancer Survivor Study LATER cohort (1963-2001) part 2, who were 18 years old or older (time since diagnosis ≥ 5 years), were invited to complete the TNO-AZL Questionnaire for Adult Health-Related Quality of Life. Domain scores and proportions of CCSs with impaired HRQOL (score < 25th percentile of the reference scores) were compared with references via Mann-Whitney U tests and logistic regression analyses corrected for age and sex (P < .004). Interactions of group with sex were included if they were significant (P < .05). Moreover, medical determinants were analyzed with multivariable logistic regression analyses. RESULTS: HRQOL scores for 1766 CCSs (mean age, 35.9 years [standard deviation, 9.4 years]; male, 51%; response rate, 71%) differed from references on most domains with small effect sizes. Both male and female CCSs were more often impaired in gross and fine motor functioning, cognitive functioning, sleep, and vitality with odds ratios (ORs) > 1.4. In addition, female CCSs were more often impaired in daily activities, pain, and sexuality (ORs, 1.4-1.9) and were less often aggressive (OR, 0.6). CCCs of central nervous system (CNS) tumors, bone tumors, and retinoblastoma and those with cranial, abdominopelvic, or lower extremity radiotherapy were at increased risk of impairment in 1 or more domains. CONCLUSIONS: Dutch adult CCSs, especially females, have impaired HRQOL in several domains; this is most pronounced in cognitive functioning. The vulnerabilities of subgroups at risk, such as CCSs of CNS tumors, were confirmed. Surveillance of HRQOL and multidisciplinary survivor care are recommended. LAY SUMMARY: The health-related quality of life in a Dutch nationwide cohort of 1766 survivors of childhood cancer was studied. Survivors of childhood cancer were found to have lower health-related quality of life in several domains (eg, motor functioning and vitality) in comparison with the general population. They most often reported low cognitive functioning (eg, memory and attention). Females had low health-related quality of life in more domains than males. Survivors of brain tumors had low health-related quality of life in most domains. Monitoring health-related quality of life regularly and collaborating between disciplines in survivor care is recommended.

Psychosocial development in survivors of childhood differentiated thyroid carcinoma: a cross-sectional study.

OBJECTIVE: The impact of childhood differentiated thyroid carcinoma (DTC) on psychosocial development has not yet been studied. The aim of this study was to evaluate the achievement of psychosocial developmental milestones in long-term survivors of childhood DTC. DESIGN AND METHODS: Survivors of childhood DTC diagnosed between 1970 and 2013 were included. Reasons for exclusion were age <18 or >35 years at follow-up, a follow-up period <5 years or diagnosis with DTC as a second malignant neoplasm. Survivors gathered peer controls of similar age and sex (n = 30). A comparison group non-affected with cancer (n = 508) and other childhood cancer survivors (CCS) were also used to compare psychosocial development. To assess the achievement of psychosocial milestones (social, autonomy and psychosexual development), the course of life questionnaire (CoLQ) was used. RESULTS: We included 39 survivors of childhood DTC (response rate 83.0%, mean age at diagnosis 15.6 years, and mean age at evaluation 26.1 years). CoLQ scores did not significantly differ between survivors of childhood DTC and the two non-affected groups. CoLQ scores of childhood DTC survivors were compared to scores of other CCS diagnosed at similar ages (n = 76). DTC survivors scored significantly higher on social development than other CCS, but scores were similar on autonomy and psychosexual developmental scales. CONCLUSIONS: Survivors of childhood DTC showed similar development on social, autonomy, and psychosexual domains compared to non-affected individuals. Social development was slightly more favorable in DTC survivors than in other CCS, but was similar on autonomy and psychosexual domains.

Long-Term Quality of Life in Adult Survivors of Pediatric Differentiated Thyroid Carcinoma.

Context: Little is known about long-term quality of life (QoL) of survivors of pediatric differentiated thyroid carcinoma. Therefore, this study aimed to evaluate generic health-related QoL (HRQoL), fatigue, anxiety, and depression in these survivors compared with matched controls, and to evaluate thyroid cancer-specific HRQoL in survivors only. Design: Survivors diagnosed between 1970 and 2013 at age ≤18 years, were included. Exclusion criteria were a follow-up <5 years, attained age <18 years, or diagnosis of DTC as a second malignant neoplasm (SMN). Controls were matched by age, sex, and socioeconomic status. Survivors and controls were asked to complete 3 questionnaires [Short-Form 36 (HRQoL), Multidimensional Fatigue Inventory 20 (fatigue), and Hospital Anxiety and Depression Scale (anxiety/depression)]. Survivors completed a thyroid cancer-specific HRQoL questionnaire. Results: Sixty-seven survivors and 56 controls. Median age of survivors at evaluation was 34.2 years (range, 18.8 to 61.7). Median follow-up was 17.8 years (range, 5.0 to 44.7). On most QoL subscales, scores of survivors and controls did not differ significantly. However, survivors had more physical problems (P = 0.031), role limitations due to physical problems (P = 0.021), and mental fatigue (P = 0.016) than controls. Some thyroid cancer-specific complaints (e.g., sensory complaints and chilliness) were present in survivors. Unemployment and more extensive disease or treatment characteristics were most frequently associated with worse QoL. Conclusions: Overall, long-term QoL in survivors of pediatric DTC was normal. Survivors experienced mild impairment of QoL in some domains (physical problems, mental fatigue, and various thyroid cancer-specific complaints). Factors possibly affecting QoL need further exploration.

Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer.

OBJECTIVE: This study aims to identify the predictive power of adolescents', parents', and illness characteristics on the functioning of adolescents when a mother has cancer. METHODS: Two hundred and seventy-one adolescents, 128 mothers with cancer, and 96 spouses completed standardized questionnaires 1-5 years after diagnosis. Stress response symptoms (SRS), internalizing and externalizing problems were assessed in adolescents. Parents' SRS, trait anxiety, marital satisfaction, and parent-adolescent communication were assessed in parents. Descriptive statistics and multilevel analyses accounting for non-independence of observations within groups were used. RESULTS: Descriptive analyses showed clinically elevated SRS in 20% of the sons and 30% of the daughters. Daughters experienced more internalizing problems than norm group girls. Multilevel analyses showed that adolescents' female gender and older age were associated with impaired child functioning. Higher levels of parents' trait anxiety and SRS, marital dissatisfaction, and poorer parent-adolescent communication were significant predictors also. Recurrent disease was associated with SRS and internalizing problems, and more intensive treatment with externalizing problems. Female gender and poorer parent-adolescent communication were overall the best predictors. CONCLUSIONS: Having a mother with cancer may have far-reaching consequences for more than a quarter of the adolescent offspring. The multilevel approach of this study identified individual-level adolescent' risk characteristics as well as family-level risk characteristics for mental health problems. Adolescents at risk should be referred to health-care professionals specialized in working with families to help them to adapt to their parent's illness.

Adolescents' emotional reactions to parental cancer: effect on emotional and behavioral problems.

OBJECTIVES: We examined adolescents' emotional reactions to parental cancer and explored relationships between emotional reactions and adolescents' emotional/behavioral problems. METHODS: Two studies were performed: retrospective and prospective. A total of 221 adolescents (105 sons) of 138 patients (retrospective) and 70 adolescents (31 sons) of 70 patients (prospective) participated. Adolescents reported on cancer-specific uncertainty, loneliness, helplessness and positive emotions (Situation-Specific Emotional Reactions Questionnaire), and filled in the Youth Self-Report once retrospectively during the period of 1-5 year(s) after diagnosis and three times prospectively during the first year (4 months post-diagnosis, 6 and 12 months after T1). RESULTS: Emotional reactions were similar between pro- and retrospective studies. Prospectively, uncertainty and helplessness decreased over time. Uncertainty and loneliness related significantly to adolescents' dysfunction (prospective and retrospective). Relationships between emotions and functioning were stronger and more often significant for daughters. Prospectively, adolescents' post-diagnosis emotional reactions were largely unrelated to later functioning. CONCLUSIONS: Uncertainty and loneliness related to adolescents' emotional and behavioral problems. Daughters' emotions seem more strongly related to functioning than sons'.

Stress response symptoms in adolescents during the first year after a parent's cancer diagnosis.

PURPOSE: This work aims to prospectively study stress response symptoms (SRS) in adolescents during the first year after a parent's cancer diagnosis and factors associated with SRS. Additionally, SRS in these adolescents were compared to SRS in adolescents whose parents were diagnosed 1-5 years (reference group) previously. METHODS: Forty-nine adolescents, 37 ill parents, and 37 spouses completed questionnaires within 4 months after diagnosis (T1) and six (T2) and 12 months (T3) later. RESULTS: Clinically elevated SRS were found in 29% of adolescents at T1, 16% at T2, and 14% at T3. In contrast, in the reference group, we found 29% clinically elevated SRS. Daughters seemed more at risk than sons. Adolescents' age, patient's gender, and intensity and duration of treatment did not significantly affect SRS. Adolescents with more SRS reported having more emotional/behavioral problems. Parents observed fewer problems in those adolescents. Initial SRS affected later SRS and emotional problems. CONCLUSIONS: The findings illustrate that adolescent children of cancer patients may have clinically elevated SRS that are associated with emotional and behavioral problems. The prevalence of such problems may be underestimated by the parents.

Quality of life of parents with children living at home: when one parent has cancer.

GOALS OF WORK: This study examined the quality of life (QoL) of cancer patients diagnosed 1-5 years previously and their spouses, with children 4-18 years living at home. Relationships between parents' QoL and the children's functioning were explored. PATIENTS AND METHODS: 166 cancer patients and their spouses provided information on their QoL (RAND-36) and on their children's functioning (Child Behavior Checklist). MAIN RESULTS: Male and female patients scored similarly to a norm population on five domains. Patients' QoL was clinically relevantly and/or statistically lower on social functioning, role limitations because of physical problems, and vitality than the norm. Male spouses' QoL was comparable to the norm. However, female spouses reported better physical functioning but more social problems. QoL varied according to type of cancer, treatment intensity, and recurrence. Using the QoL composite scores, a significant relationship was found between patients' psychosocial and physical functioning and spouses' psychosocial functioning. Patients' psychosocial functioning correlated moderately strongly to weakly with their reports of their younger children's and adolescents' functioning; physical functioning correlated only weakly with adolescents' functioning. The patients' functioning related weakly to moderately strongly to adolescents' self-reports of functioning. Spouses' psychosocial functioning weakly related to their and adolescents' reports of adolescents' functioning. CONCLUSIONS: Cancer patients' QoL 1-5 years after diagnosis was decreased in three of eight domains; their spouses seem to be doing well. Parents' physical and psychosocial functioning related weakly to moderately strongly to their children's functioning, depending on the child's age and information source. The patients' functioning related more strongly to the children's functioning than the spouses' did.

Emotional and behavioral problems in children of parents recently diagnosed with cancer: a longitudinal study.

This study examines the prevalence of problems in children within four months after a parent's cancer diagnosis (T1) and six (T2) and twelve months (T3) afterwards. Sixty-nine ill parents and 57 spouses completed the Child Behavior Checklist for 57 primary school (aged 4-11 years) and 66 adolescent children (aged 12-18 years). Adolescents completed the self-report version. Children's functioning was compared to that of the norm group and a sample of families that were confronted with parental cancer between one to five years before study participation (retrospective study). Most children were reported as having a similar level as or fewer problems than was reported in the norm and retrospective studies. Reported problems decreased with time, but children who initially had more problems remained vulnerable during the year. Fathers and mothers highly agree in their perception of children's behavior, with the exception of adolescent daughters' behavior. Agreement between mothers and adolescent daughters was high, whereas agreement between fathers and adolescent sons and daughters, and mothers and adolescent sons was low to moderate. The outcomes suggest that most children do not experience problems shortly after the parent's diagnosis and were functioning over time on a level equal to or better than that of their peers. Differences in informant's perceptions appear and remain of interest.

Temperament as a predictor of internalising and externalising problems in adolescent children of parents diagnosed with cancer.

OBJECTIVE: This study examined the relationship between temperament and internalising and externalising problems among children of parents diagnosed with cancer, beyond the effects of socio-demographics, illness-related variables and life events. MATERIALS AND METHODS: Three hundred and forty adolescent children and their 212 parents diagnosed with cancer participated. Children and parents completed the Youth Self Report and the Child Behaviour Checklist, respectively. Children completed also the Early Adolescent Temperament Questionnaire. MAIN RESULTS: Daughters of parents with cancer were reported as having more internalising problems than their counterparts did. Prevalence of problems did not depend on children's and parents' age or educational level. Recurrent disease and number of life events experienced by children and parents affected the problems reported. The most important temperament dimensions in the prediction of internalising problems in children were shyness and fear/worry, to a lesser extent, frustration and perceptual sensitivity (children only) and lower scores on pleasure intensity (parents only). Externalising problems were associated with effortful control and in children's reports with frustration. Temperament seemed to be a more important predictor of problems reported by children than parents. CONCLUSION: Findings suggest that temperament is useful in determining the relative vulnerability of children of parents who have been diagnosed with cancer. Social workers may help parents to recognise individual differences between children and to support children by using techniques that are compatible with the temperament of children.

Parental cancer: characteristics of parents as predictors for child functioning.

BACKGROUND: The vulnerability of children when a parent is diagnosed with cancer may depend on a variety of variables. The current study examined the impact of characteristics of 180 parents diagnosed with cancer, along with 145 spouses, on the prevalence of emotional and behavioral problems in children. METHODS: Ill parents provided information on sociodemographics and illness-related variables and on the prevalence of problems in children by using the Child Behavior Checklist (CBCL). Both parents completed the two subscales that measure physical functioning and mental health of the RAND-36. RESULTS: The family situation (single parents, no or few siblings, oldest child) was one of the most important predictors of reported problems in primary school children, whereas adolescents were reported as having more problems when parents experienced treatment complications. A decrease in ill parents' physical functioning affected primary school daughters and adolescents, and both age groups were affected by the mental health of ill parents. Problems of ill fathers did not have a different impact on children from those of ill mothers. Spouses' physical limitations were indicative for problems in primary school children, whereas a worsening parental mental health was indicative for problems in adolescents. CONCLUSIONS: Findings illustrated that parents' characteristics must be taken into account when assessing vulnerability of children in this situation. Which variables particularly heighten the risk for problems depend on children's ages.

Emotional and behavioural functioning of children of a parent diagnosed with cancer: a cross-informant perspective.

This study investigates emotional and behavioural problems in children of parents diagnosed with cancer and examines the relationship with demographic and illness-related variables. Furthermore, agreement and differences between informants regarding child's functioning were examined. Members of 186 families in which a parent had been diagnosed with cancer participated. More emotional problems were reported for latency-aged sons (ill parents) and adolescent daughters (ill parents; self-reports), whereas also better functioning was reported in adolescent children (spouses), compared to the norm group. Age and gender-effects were found: latency-aged sons were perceived as having more emotional problems than adolescent sons (ill parents); adolescent daughters as having more emotional and behavioural problems than adolescent sons (ill parents; self-reports). Results indicated a higher prevalence of problems when the father was ill than when the mother was (spouses and self-reports). The treatment intensity affected adolescent daughter's functioning (spouses), whereas adolescent son's functioning was affected by relapsed disease (self-reports). Adolescents and mothers perceived comparable levels of problems, but fathers perceived problems in children to be less prevalent. Findings suggest that adolescent daughters and latency-aged sons are at risk for emotional problems following the diagnosis of cancer in a parent. The perception of child's functioning and potential influencing variables varied according to informant.

Stress response symptoms in adolescent and young adult children of parents diagnosed with cancer.

The aim of this study was to assess stress response symptoms in children of parents diagnosed with cancer 1-5 year prior to study entry. The impact of event scale was used to measure stress response symptoms in terms of intrusion and avoidance; the youth self-report assessed emotional and behavioural functioning; the state-trait anxiety inventory for children measured trait-anxiety. Participants included 220 adolescents (aged 11-18 years) and 64 young adults (aged 19-23 years) from 169 families. Twenty-one percent of the sons and 35% of the daughters reported clinically elevated stress response symptoms. Daughters, particularly those whose mothers were ill, reported significantly more intrusion and avoidance than did sons. Intrusion among daughters was positively related to age. Stress response symptoms in both sons and daughters were significantly associated with trait anxiety, but not with intensity of treatment or time since diagnosis. Daughters whose parents suffered from recurrent illness reported more symptoms than did daughters whose parents had a primary disease. Children (daughters in particular) with clinically elevated stress response symptoms reported significantly more problems of internalising and cognition than did their norm group peers. One-fifth of the sons and more than one-third of the daughters expressed clinically elevated stress response symptoms. These children also reported internalising and cognitive problems. Daughters appeared to be more at risk than sons.

The impact of parental cancer on children and the family: a review of the literature.

OBJECTIVE: Children of cancer patients may go through a distressing time. The aim of this review was to survey present knowledge on the impact of parental cancer on children and the family. DESIGN: Studies published between January 1980 and March 2004 addressing emotional, social, behavioural, cognitive and physical functioning of children of a parent diagnosed with cancer, as well as the association with child, parental and familial variables were reviewed. RESULTS: Fifty-two studies were found. Emotional problems in school-aged children (11 years) were reported in several qualitative studies, but in only one quantitative study. Quantitative and qualitative studies reported anxiety and depression in adolescents (12 years), in particular in adolescent daughters of ill mothers. Quantitative studies generally showed no behavioural and social problems in school-aged children and adolescents. One quantitative study found physical complaints in school-aged children. However, qualitative studies revealed behavioural problems in school-aged children and also described restrictions in cognitive and physical functioning in children of all ages. The most consistent variables related to child functioning appeared to be parental psychological functioning, marital satisfaction and family communication. Intervention studies directed to the needs of children and their families reported positive effects. CONCLUSION: While quantitative studies reported especially disturbed emotional functioning, qualitative studies reported problems in all domains of child functioning. Well-designed studies are needed to gain more insight into the psychosocial functioning of children of cancer patients in order to develop tailored care.

Psychosocial consequences for children of a parent with cancer: a pilot study.

When cancer is diagnosed in a parent, this may also have consequences for the children. The purpose of this pilot study was to gain more insight into the psychosocial consequences for children of a parent with cancer, from the perspective of both the children and their parents. For this study, 14 families participated in semistructured interviews and completed standardized questionnaires. Interviews were tape-recorded, transcribed, and analyzed using content analysis techniques. No significant difference was found in behavioral and emotional problems between the children in these families and the normative sample. However, parents reported problems on a borderline and clinically elevated level in one third of the children, and three of seven children self-reported problems on these levels. The interview results showed that parents reported (temporary) behavioral problems in most children during the acute stage of their parents' illness. Other problems, such as anxiety, sleeping disorders, and compulsive behavior, persisted for longer. Parents reported that their children had more problems than the children themselves reported. This finding was not supported by the quantitative analysis. The results from the Child Behavior Checklist and the Dutch version of the Family Adaptability and Cohesion Evaluation Scales showed that children of families with poor family functioning were more vulnerable. In particular, extremely high adaptation (chaotic) and extremely low family cohesion (disengaged) seemed related to the prevalence of emotional and behavioral problems in these children. Absence of home healthcare was an additional burden for adolescent children.