Psychosocial outcomes and quality of life among school-age survivors of retinoblastoma.

BACKGROUND: Retinoblastoma is the most common intraocular childhood cancer and is typically diagnosed in young children. With increasing number of survivors and improved medical outcomes, long-term psychosocial impacts need to be explored. Thus, the current study sought to assess functioning in school-aged survivors of retinoblastoma. PROCEDURE: Sixty-nine survivors of retinoblastoma underwent a one-time evaluation of psychosocial functioning. Survivors (Mage = 10.89 years, SD = 1.07 years; 49.3% male; 56.5% unilateral disease) and parents completed measures of quality of life (QoL; PedsQL) and emotional, behavioral, and social functioning (PROMIS [patient-reported outcome measurement information system] Pediatric Profile, BASC-2 parent report). Demographic and medical variables were also obtained. RESULTS: On the whole, both survivors and caregivers indicated QoL and behavioral and emotional health within the typical range of functioning. Survivors reported better physical QoL compared to both parent report and a national healthy comparison sample, whereas caregivers reported that survivors experienced lower social, school, and physical QoL than a healthy comparison. Regarding behavioral and emotional health, survivors indicated more anxiety than a nationally representative sample. Parents of female survivors endorsed lower adaptive scores than parents of male survivors. CONCLUSIONS: Results indicated that survivors of retinoblastoma reported QoL and behavioral and emotional health within normal limits, although parents appear to perceive greater impairment across several assessed domains. Understanding both survivor and parent reports remains important for this population. Future research should explore psychosocial functioning of these survivors as they transition to adolescence and early adulthood, given the increased independence and behavioral and emotional concerns during these developmental periods.

Profiles of Resilience, Distress, and Posttraumatic Growth in Parents of Children with Cancer and the Relation to Subsequent Parenting and Family Functioning.

OBJECTIVE: The aim of this study was to identify patterns of distress and growth in parents of children with cancer and examine associations with subsequent parenting, parent-child relationship, and family environment. METHODS: Participants included children with cancer history (8-17 years) stratified by time since diagnosis and their parent. At enrollment, parents (n = 254) reported depression and anxiety, and post-traumatic stress symptoms, posttraumatic growth (PTG), and benefit finding in relation to their child's cancer. Three years later, children (n = 214) reported parenting behavior, parent reactions to their distress, and family environment. Parents reported their reaction to children's distress and qualities of the parent-child relationship. RESULTS: Latent profile analysis empirically identified 3 cross-sectional profiles using baseline data: "Resilience, High Growth" (50%), characterized by the lowest distress and the highest PTG/benefit finding; "Moderate Distress with Growth" (33%), characterized by relatively high levels of all indicators; and "Resilience, Low Growth" (17%), characterized by relatively low distress with low PTG/benefit finding. Membership in profiles was associated with parent gender; parents' stressful life events; socioeconomic status; and child diagnosis, on versus off treatment status, and treatment intensity. Parent membership in the Moderate Distress with Growth profile was generally linked with poorer parenting behavior, parent-child relationship quality, and family functioning. CONCLUSION: The majority of parents exhibited resilience and growth. However, a subset of parents displaying moderate distress may be at risk for subsequent parenting and family functioning challenges. Findings further highlight the importance of screening for even moderate parent distress and the possible impact of parent psychosocial interventions indirectly on parenting and family functioning.

"Giving the gift of life twice": Understanding the lived experiences of parent donors and nondonors in pediatric haploidentical hematopoietic cell transplantation.

BACKGROUND: The use of parental donors in pediatric haploidentical hematopoietic cell transplantation is increasing, but research on the psychosocial impact of parental donation is currently limited. OBJECTIVES: As part of a larger study, we conducted a retrospective, qualitative analysis to explore parental perceptions of the donation process and the impact of being a donor (or nondonor) on parents' adjustment and coping with their child's transplant experience. METHODS: Parents/caregivers of children who underwent transplantation with a parental donor or a matched unrelated donor (N = 136) participated in interviews and completed an open-ended questionnaire. RESULTS: Six themes were identified in the data: level of understanding and satisfaction; perception of choice; preparation for donation; perceptions of donation and infusion; benefit finding; and psychological impact of transplantation. Most parents were satisfied with the information they received and reported a good understanding of transplantation and donation procedures. Parents were divided on perspectives of choice, but their responses reflect that the necessity of saving their child's life does not allow for choice. They described considerable effort to prepare for transplantation, physically, emotionally, and logistically. Parents acknowledged the psychological impact while identifying positive outcomes that resulted from their child's transplant journey. CONCLUSIONS: Results highlight the unique experiences of parental donors and nondonors from the anticipation phase to the completion of their child's transplant. Additionally, findings inform supportive care guidance by highlighting the need to assess parental donors' emotional functioning, provide support post donation, and conduct bereavement follow-up.

Centrality of the childhood cancer experience and its relation to post-traumatic stress and growth.

OBJECTIVE: Event centrality, the degree to which a traumatic event is perceived as central to one's identity, has been associated with post-traumatic stress (PTS) symptoms and post-traumatic growth (PTG) outcomes in various trauma samples. Trauma frameworks are widely used to understand the psychological impact of pediatric cancer; however, event centrality has not been studied in this population. We investigated event centrality in pediatric cancer survivors and healthy comparisons, and its relation with PTS and PTG outcomes. METHOD: Cancer survivors, age 13-23 (N = 196) and healthy comparisons (N = 131) completed the Centrality of Events Scale and PTS and PTG measures in reference to their most traumatic life event. Cancer survivors who first identified a non-cancer-related event repeated all measures in reference to cancer. RESULTS: Centrality scores were significantly higher when referencing cancer compared to non-cancer events, even in survivors for whom cancer was not rated as most stressful (53.1%). Centrality scores for non-cancer events were not significantly different between survivors and healthy comparisons. Event centrality showed significant positive relations to both PTS and PTG outcomes. CONCLUSION: The pediatric cancer experience is perceived as central to survivors' identity regardless of whether the experience is perceived as highly traumatic. Centrality of cancer is a significant predictor of both positive and negative psychological outcomes in cancer survivors.

Psychometric evaluation of the brief RCOPE and relationships with psychological functioning among caregivers of children undergoing hematopoietic stem cell transplant.

OBJECTIVE: Spiritual and religious (S/R) coping is a relevant yet understudied domain of coping among caregivers of children undergoing hematopoietic stem cell transplantation (HCT). The aims of this manuscript are to: (1) conduct the first psychometric evaluation of the Brief RCOPE in this population; (2) examine levels of and changes in S/R coping over time; and (3) explore the relationship between S/R coping trajectories and psychological functioning post-HCT. METHODS: Caregivers (n = 170) of children (ages ≤12 years, n = 170) undergoing HCT completed the Brief RCOPE and the Brief Symptom Inventory (BSI) pre- and at multiple time points post-HCT discharge. Factor structure, internal consistency, and validity were examined. Growth mixture models were used to identify subgroups with similar S/R coping trajectories, with group memberships added to mixture models to explore relationships between group membership and caregiver psychological functioning trajectories. RESULTS: The Brief RCOPE exhibited the previously-supported two factor structure and each subscale demonstrated strong internal consistency (α = 0.85 and 0.92). Validity was supported by significant correlations with BSI scores. There were distinct subgroups of caregivers with different patterns of positive (n = 4 subgroups) and negative (n = 3 subgroups) S/R coping, with negative coping subgroup membership predicting changes in psychological functioning. CONCLUSIONS: The Brief RCOPE is a promising measure for assessing S/R coping among caregivers of children undergoing HCT and has the potential to identify caregivers at risk for poorer long-term psychological functioning.

The Influence of Early Childhood Temperament on Later Social-Emotional Functioning in Youth with Cancer.

OBJECTIVE: One of the peak incidences of childhood cancer is during the early childhood years. This is also an important time for psychosocial and personality development, and it is well known that early childhood temperament influences later psychosocial functioning. However, this association has not been examined in young children with cancer. METHODS: Parents of children with cancer (N = 39) and healthy comparisons (N = 35) completed an indicator of temperament (Children's Behavior Questionnaire) when children were young (Mage=4.99 ± 1.05 years). Five years later, parents and youth completed measures of psychosocial functioning (Mage=10.15 ± 1.10 years; Behavior Assessment Scale for Children, 2nd edition and Social Emotional Assets and Resilience Scale). RESULTS: Parents of healthy comparisons reported that their children demonstrated greater surgency than youth with cancer; there were no differences in negative affect or effortful control. Children with cancer and healthy comparisons were rated similarly on measures of psychosocial functioning. Health status was not a significant predictor of later functioning, but socioeconomic status and temperament were. The influence of temperament was stronger for strengths-based functioning (e.g., social competence, adaptive functioning) versus distress (internalizing and externalizing problems). CONCLUSIONS: Early childhood temperament is a strong predictor of later psychosocial functioning, regardless of health status. Findings highlight the need to consider temperament in the clinical assessment of psychosocial functioning in children with cancer. Additional research is needed to specifically assess how a diagnosis of cancer in early childhood influences temperament over time.

Responsivity to Problem-Solving Skills Training in Mothers of Children With Cancer.

OBJECTIVE: Bright IDEAS (BI) is a problem-solving skills training (PSST) program that has been demonstrated in earlier randomized controlled trials (RCTs) to be an effective and specific intervention for improving problem-solving skills and reducing negative affect in caregivers of children with cancer. The objectives of this study were to (a) offer an approach to defining meaningful treatment response and to determine the rates of responsivity to PSST; and (b) identify characteristics of PSST responders and nonresponders. METHODS: Data from 154 mothers receiving the BI intervention were analyzed. Drawing on the literature on minimal clinically important differences, two criteria for determining responsivity were calculated for the primary outcome of problem-solving skills: (a) The reliable change index (RCI) based on group data, and; (b) The effect size (ES) of each participant's pre/postintervention change score as a function of the group's baseline SD. RESULTS: Thirty-three percent of the sample met both responsivity criteria immediately posttreatment (39% at follow-up) and 38% (39% at follow-up) met neither. An additional 29% demonstrated a small or greater ES (≥ 0.2) but did not meet the RCI criteria, suggesting possible benefit. The single consistent predictor of responsivity was participants' pretreatment problem-solving skills, with lower skills at baseline predicting greater improvement (p < .001). CONCLUSIONS: These findings highlight the need to go beyond group data in interpreting RCTs and to incorporate measures of meaningful treatment response. Our ability to predict and screen for meaningful treatment response is critical to more precise targeting, enhanced outcomes, and better resource allocation.

Longitudinal Trajectories of Neurocognitive Functioning in Childhood Acute Lymphoblastic Leukemia.

OBJECTIVE: Children with acute lymphoblastic leukemia (ALL) are at risk for neurocognitive deficits, and examining individual variability is essential to understand these risks. This study evaluated latent longitudinal trajectories and risk factors of neurocognitive outcomes in childhood ALL. METHODS: There were 233 participants with ALL who were enrolled on a phase 3, risk-stratified chemotherapy-only clinical trial (NCT00137111) and who completed protocol-directed neurocognitive assessments [47.6% female, mean (SD) = 6.6 (3.7) years]. Measures of sustained attention, learning/memory, and parent ratings of attention were completed during and after treatment. Longitudinal latent class analyses were used to classify participants into distinct trajectories. Logistic regression was used to identify predictors of class membership. RESULTS: Within the overall group, attention performance was below age expectations across time (Conners Continuous Performance Test detectability/variability, p < 0.01); memory performance and parent ratings were below expectations at later phases (California Verbal Learning Test learning slope, p < 0.05; Conners Parent Rating Scale, Revised attention/learning, p < 0.05). Most participants (80-89%) had stable neurocognitive profiles; smaller groups showed declining (3-6%) or improving (3-11%) trajectories. Older age (p = 0.020), female sex (p = 0.018), and experiencing sepsis (p = 0.047) were associated with greater attention problems over time. Lower baseline IQ was associated with improved memory (p = 0.035) and fewer ratings of attention problems (p = 0.013) over time. CONCLUSIONS: Most patients with ALL have stable neurocognitive profiles. Smaller groups have significant impairments shortly after diagnosis or have worsening performance over time. A tiered assessment approach, which includes consideration of individual and clinical risk factors, may be useful for monitoring neurocognitive functioning during treatment and survivorship.

Profiles and predictors of resilient functioning in youths with pediatric cancer history.

OBJECTIVE: To identify and predict resilient functioning over time among youths with pediatric cancer experience (YPCE). DESIGN: YPCE aged 8-17 years (N = 231) were followed prospectively for 3 years. Their psychosocial adjustment was assessed using self-report and parent-report at 1 year (T2) and 3 years (T3) post-baseline. METHODS: Latent profile analysis identified subgroups of YPCE with different patterns of adjustment over time. Self-reported factors from baseline and T2 were examined as predictors of subgroup membership. FINDINGS: Three subgroups of youths were found. Two exhibited average (52.5% of the sample) to better-than-average (41.3%) functioning. One subgroup (6.2%) exhibited subclinical but at-risk range of adjustment. Low optimism and low connectedness to parents and school predicted membership in this group. CONCLUSIONS: Most YPCE exhibit resilient functioning across time. However, approximately 6% report persistent maladjustment. IMPLICATIONS: Most YPCE are well-adjusted, but those with low optimism and poor connection to parents or school may require monitoring for psychosocial difficulties.

Profiles of perceived social functioning in adolescent and young adult survivors of childhood cancer.

OBJECTIVES: Social interaction and peer relationships are critical for development, especially for adolescents and young adults (AYA). Cancer treatment may disrupt social functioning and impact quality of life. Prior research into AYA social functioning has primarily been qualitative in nature or assessed via broad measures of functioning. Given the multi-dimensional nature of social functioning, and its importance for AYA, a person-centered approach to analyses is needed. METHODS: AYA survivors of childhood cancer, ages 13 to 23 (n = 192, 51% male) and at least 1 year post-treatment (M = 7.35 ± 4.18 years post), completed measures to assess perceived social functioning, social support, and positive and negative affect. Caregivers also completed a measure of social functioning. Latent profile analysis was used to empirically derive profiles of perceived social functioning using the self-perception profile for adolescents (SPPA). RESULTS: A 3-class solution provided the best fit to the data: 58.9% average, 33.7% high, and 7.5% low functioning. The average group reported mean scores that were similar to normative values available in the SPPA manual. Demographic and medical factors were unrelated to class membership. Social support and positive/negative affect differed significantly by class; caregiver-report of social functioning did not. CONCLUSIONS: Overall, the majority of AYA survivors of childhood cancer are doing well socially, with perceived adequate social functioning associated with both high levels of social support as well as greater perceptions of positive affect. Future work is needed to elucidate longitudinal trajectories of social functioning, as well as to identify and intervene with those survivors who are struggling.

Impact of the parent-child relationship on psychological and social resilience in pediatric cancer patients.

OBJECTIVES: The primary objective of this research was to examine patterns of parent-child relationship functioning among pediatric cancer survivors and their caregivers across a variety of relationship indicators (ie, Involvement, Attachment, Communication, Parenting Confidence, and Relational Frustration), and evaluate how these factors relate to psychosocial outcomes in survivors. METHODS: Young survivors aged 10 to 18 and their caregivers (N = 165) completed measures related to posttraumatic stress and general distress. Caregivers also completed assessments of parent-child relationship functioning, and survivors completed assessments of social functioning. Latent profile analysis was performed to identify patterns of relationship functioning. Medical, demographic, and parent functioning variables were examined as predictors, and youth's psychological and social functioning were examined as outcomes. RESULTS: A three-class solution was the best fit to the data. The struggling parent-child relationship profile (15%) evidenced below average levels of parent-child relationship functioning across several domains. The normative parent-child relationship (60%), was characterized by average levels of parent-child relationship functioning across all domains. Finally, the high-involved parent-child relationship profile (25%) demonstrated above average levels of parent-child relationship functioning in involved activities, communication, and attachment and normative levels of functioning across all other domains. Medical and parent functioning factors predicted profile membership. In turn, profile membership was associated with survivor psychological and social outcomes. CONCLUSION: Findings document the importance of extending existing research to examine patterns of parent-child relationship functioning, which may serve as a clinically relevant target to improve psychological and social outcomes in young survivors of childhood cancer.

Parental Efficacy and Control Questionnaire in Hematopoietic Stem Cell Transplant: Preliminary Validation.

OBJECTIVE: Develop and evaluate the preliminary validity of a self-report measure of parents' treatment-related efficacy and control, Parental Efficacy and Control Questionnaire-Hematopoietic Stem Cell Transplant (PECQ-HCT), in a pediatric HCT sample. METHODS: Participants included 185 parents of children (≤12 years old) receiving HCT participating in a larger, longitudinal study. Parents completed the PECQ-HCT as well as measures of social problem-solving skills, collective family efficacy, family beliefs, and parental distress. RESULTS: Exploratory factor analysis results indicated that a 37-item four-factor model was the best fitting and most theoretically sound, χ2(df = 1,596) = 14,089.95, p < .01, comparative fit index = 0.92, Tucker-Lewis Index = 0.90, and root mean square error of approximation = 0.07. Preliminary subscale scores demonstrated adequate internal consistency as well as good content and criterion-related validity. CONCLUSIONS: If replicated using a confirmatory factor analysis in a separate sample, these findings suggest that the four-factor PECQ-HCT measure may be useful for measuring HCT-related parental efficacy and perceived control.

Posttraumatic stress in young children with cancer: Risk factors and comparison with healthy peers.

OBJECTIVE: The most commonly occurring childhood cancers are diagnosed during the preschool years; yet limited psycho-oncology research has focused on this developmental time period. The primary objective was to examine rates of posttraumatic stress symptoms (PTSS) in young children with cancer and compare these findings with those of children without a history of serious illness (comparisons). The secondary aim was to examine risk and modifiable factors associated with PTSS. METHOD: Ninety-seven caregivers of patients (n = 50) and comparisons (n = 47) aged three to six years completed diagnostic interviews for the assessment of PTSD. They also completed a survey measure of PTSS adapted from the Child Behavior Checklist (CBCL-PTSD), along with measures of their child's temperament and their own current psychological functioning. RESULTS: On the CBCL-PTSD, no differences in PTSS were observed between children with cancer and comparisons, although many in both groups appeared at risk, with approximately 34% of children with cancer and 27% of comparisons meeting threshold scores for probable PTSD. However, using a "gold-standard" clinical-interview assessment, only three children in the patient group and no children in the comparison group met diagnostic criteria for PTSD. Parental distress and child temperament were significantly associated with PTSS scores. CONCLUSION: Findings indicate PTSD is relatively infrequent in children with cancer, and survey measures may overestimate rates of PTSD in young children. However, other emotional or behavioral issues may be present. Ultimately, screening for potential emotional/behavioral concerns in young children with cancer is indicated, and interventions should continue to target caregiver distress.

The impact of connectedness on social functioning in youth with brain tumors.

PURPOSE: Children with brain tumors (BT) are at risk for difficulties with social functioning. Research to date has focused on deficits, with no studies identifying areas of strength or resilience. Our objective was to assess the potential influence of connectedness on social functioning in youth with BT as compared with children with other cancers. METHODS: Children with cancer (20 with BT, 33 with other diagnoses) were enrolled on a longitudinal study of psychosocial functioning. The current study included measures from time 2 (+1 year after enrollment; Mage  = 13.11 ± 2.31, Mtimesincediagnosis  = 4.95 ± 3.74 years) and time 3 (+3 years after enrollment; Mage  = 14.98 ± 2.36, Mtimesincediagnosis  = 6.82 ± 3.81 years). Youth completed the Hemingway Measure of Adolescent Connectedness (HMAC) at time 2. Two years later, social functioning was assessed by the self- and proxy-report versions of the Social-Emotional Assets and Resilience Scale (SEARS). RESULTS: Youth with BT perceived that they were less connected to friends (t(50) = -2.13, P = 0.04), but similarly connected to peers as youth with other cancers. Youth with BT also demonstrated lower social functioning by self- and parent report. Connectedness to friends significantly mediated the relationship between diagnostic category and self-reported social functioning, such that youth with BT who reported being more connected to friends also indicated greater social functioning. Analyses using connectedness to peers and/or parent-reported social functioning were nonsignificant. CONCLUSIONS: Perceiving a connection to a friend may be a protective factor that could mitigate deficits in social functioning in youth with BT. Additional research is needed to further assess the potential benefits of this construct.

Adjustment in Childhood Cancer Survivors, Healthy Peers, and Their Parents: The Mediating Role of the Parent-Child Relationship.

Objectives: Aims were to (1) determine whether the associations between parent psychological functioning and adjustment outcomes of childhood cancer survivors (CCS) were mediated by the parent-child relationship and (2) examine possible differences in pathways for CCS and healthy peers. Method: The study included CCS (n = 206), healthy peers (n = 132), and their primary caregivers. Youth (8-21 years) reported on the quality of the parent-child relationship and on their positive and negative adjustment outcomes. Parents reported on their own distress, posttraumatic growth, quality of the parent-child relationship, and their child's positive and negative adjustment outcomes. Two mediation models were tested, first examining youth-reported adjustment as the outcome and second examining parent-reported youth adjustment. Differences between model path coefficients of CCS and healthy peers were assessed by multigroup analyses. Results: In the youth-reported model, the parent-child relationship mediated the relation between parental distress and adjustment, with more care leading to better youth-reported adjustment outcomes and more overprotection leading to poorer adjustment outcomes. In the parent-reported model, relational frustration and attachment mediated the link between parental distress/growth and parent-reported youth adjustment, with more relational frustration and less attachment relating to poorer youth adjustment outcomes. Multigroup analyses revealed no differences in model path coefficients between CCS and healthy peers. Conclusions: Parental distress and the parent-child relationship likely play an important role in both youth- and parent-reported adjustment, and associations among these constructs do not differ between CCS and healthy peers. Families with less optimal parental functioning may benefit from interventions improving the quality of parent-child interactions.

Youth and parent perceptions of parenting in childhood cancer survivors and healthy peers.

PURPOSE: Having a child diagnosed with cancer may have a long-term impact on parenting practices. The aims of this study were to (a) examine possible differences in youth and parent perceptions of parenting between childhood cancer survivors and healthy comparisons, (b) determine the concordance between youth and parent perceptions of parenting, and (c) explore differences in parent-youth concordance between survivors and healthy comparisons. METHODS: Participants were youth aged 8-18 years (N = 170 childhood cancer survivors, N = 114 healthy comparisons) and one of their parents. All patients were ≥ 3 years from diagnosis (M = 6.52, SD = 3.60). Both youth (Parental Bonding Instrument (PBI)) and parents (Parenting Relationship Questionnaire (PRQ)) reported on their perceptions of parenting. Two separate MANCOVA's (PBI and PRQ) were conducted to determine possible differences between childhood cancer survivors and healthy peers. Concordance between youth and parent perceptions of parenting was examined. RESULTS: Survivors did not differ from healthy peers in their perception of parental care and overprotection (p = .890). Likewise, parents in the survivor and healthy peer groups did not differ in their perceptions of involvement, attachment, communication, confidence, or relational frustration (p = .360). Youth's report of a caring parent-child relationship was positively associated with parent-reported involvement, attachment, communication, and parenting confidence and negatively associated with parent-reported relational frustration. Youth-perceived overprotection was positively associated with parent-reported relational frustration. No differences were found in parent-youth concordance between survivors and healthy comparisons. CONCLUSION: A history of childhood cancer does not appear to adversely influence parenting behavior, as perceived by both youth and their parents.

Profiles of Adjustment in Pediatric Cancer Survivors and Their Prediction by Earlier Psychosocial Factors.

Objective: To examine individual differences in pediatric cancer survivors' psychosocial adjustment and test the psychosocial predictors, assessed 2-3 years earlier, of those differences. Method: Pediatric cancer survivors (n = 209, aged 8-17 years at baseline) and their parents were followed for 4 years. They provided reports of survivors' psychosocial adjustment at 3 years post-baseline, and latent profile analysis (LPA) was used to identify subgroups of survivors who differed on those reports. Multinomial logistic regression was used to predict group membership from self- and parent-reported psychosocial factors at baseline (child adjustment, disposition, and parental functioning) and at 1 year post-baseline (child social relations). Results: The LPA revealed a 3-class model as the best fit: a "Resilient" group (65%), characterized by good psychosocial adjustment; a "Self-Reported At-Risk" group (23%), characterized by subclinical elevations in self-reported internalizing and attention problems; and a "Parent-Reported At-Risk" group (12%), characterized by subclinical elevations in parent-reported internalizing, externalizing, and attention problems and in self-reported attention problems. Several psychosocial predictors, including child posttraumatic stress, affectivity, and connectedness to school, as well as parental distress and overprotection, differentiated the Resilient group from the other groups, in expected directions. Conclusions: The majority of pediatric cancer survivors exhibit enduring resilience. The protective factors identified for them-including positive affectivity and strong connectedness to school-may inform targeted prevention strategies for the minority of survivors who are at risk for maladjustment.

Cancer as a stressful life event: Perceptions of children with cancer and their peers.

BACKGROUND: The medical traumatic stress model is commonly applied to childhood cancer, assuming that the diagnosis of cancer is a traumatic event. However, to the authors' knowledge, little is known regarding what specifically children perceive as stressful about cancer or how it compares with other stressful events more often experienced by children. METHODS: Children with cancer (254 children) and demographically similar peers without a history of serious illness (202 children) identified their most stressful life event as part of a diagnostic interview assessing for symptoms of posttraumatic stress disorder (PTSD). The events identified as most stressful were categorized thematically, with categories established separately for cancer-related and non-cancer-related events. Events also were examined to assess whether they met Diagnostic and Statistical Manual of Mental Disorders (DSM) A criteria for PTSD. RESULTS: In the group of children with cancer, 54% described a cancer-related event as the most stressful event they had experienced. Six distinct categories of cancer-related events and 10 categories of non-cancer-related events were identified. The same noncancer events were identified by children in both groups, and occurred at similar frequencies. The percentage of cancer-related events that met DSM A criteria for PTSD differed dramatically depending on which version of the DSM was applied. CONCLUSIONS: Children do not necessarily view their cancer experience as their most stressful life event. The findings of the current study suggest that the diagnosis of cancer might be better viewed as a manageable stressor rather than a major trauma, and are consistent with the change in the fifth edition of the DSM to eliminate the diagnosis of a life-threatening illness as a qualifying trauma for PTSD. Cancer 2017;123:3385-93. © 2017 American Cancer Society.

The impact of childhood cancer: Perceptions of adult survivors.

BACKGROUND: The objective of this study was to describe perceptions and associated risk factors of the impact of cancer on functional outcomes, including social relationships, exercise, finances, and religion, among adult survivors of childhood cancer. METHODS: Evaluable participants included 3001 adult survivors (mean age, 32.5 years; range, 18.3-63.8 years; 24.1 years from diagnosis; 50.8% male; 84.9% Caucasian) who were enrolled in the St. Jude Lifetime Cohort study. Perceptions of the impact of cancer were assessed using the Brief Cancer Impact Assessment (BCIA). Regression models were used to evaluate risk factors for functional outcomes. RESULTS: The median response on the BCIA was a perception that cancer had minimal impact on the domains assessed. Approximately 33.1% to 46.6% of survivors indicated this response across the 4 subscales, although responses ranged from very positive to very negative impact. Other than diagnosis (with survivors of brain tumors generally indicating a more negative impact of cancer, with subscale estimates of -1.25 for caregiving and finance and -1.01 for social and emotional and an odds ratio of 1.83 for exercise and diet), most variability was because of demographic factors, including sex, age, race, education, and employment. CONCLUSIONS: The current findings highlight that many long-term adult survivors perceive minimal impact of childhood cancer on functional aspects of adulthood, including caregiving, finances, exercise, social-emotional relationships, and religion. This suggests that survivors may not be focusing on the influence of likely physical and psychological late effects of their disease in their day-to-day lives. For those who do perceive a negative impact, variability in responses suggests that there are of survivors who may benefit from interventions focused on the achievement of functional goals. Cancer 2017;123:1625-1634. © 2017 American Cancer Society.

Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.

BACKGROUND: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences. METHODS: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores. RESULTS: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation. CONCLUSIONS: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society.