Test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders.
Prospective cohort study.
Children's hospital and surrounding region.
33 pediatric patients receiving palliative care consult services who did not have LOI orders at time of cohort entry and their 43 parental adults.
Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories
Main Outcome Measures
Enactment of an LOI order after entry into the cohort.
During the 6 months of observation, 14 patients had (42.4%) an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order [AOR 2.73; 95% CI: 1.04, 7.22]. Increased odds of LOI enactment were associated to non-significant degrees with lower levels of parental positive affect [AOR 0.44; 95% CI: 0.17, 1.12], higher levels of parental negative affect [AOR 2.02; 95% CI: 0.98, 4.16], and parental perceptions of worsening health over time [AOR 1.72; 95% CI: 0.73, 4.07].
For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decisionmaking.
Major professional organizations have called for psychosocial risk screening to identify specific psychosocial needs of children with cancer and their families and facilitate the delivery of appropriate evidence-based care to address these concerns. However, systematic screening of risk factors at diagnosis is rare in pediatric oncology practice. Subsequent to a brief summary of psychosocial risks in pediatric cancer and the rationale for screening, this review identified three screening models and two screening approaches (Distress Thermometer [DT], Psychosocial Assessment Tool [PAT]), among many more papers calling for screening. Implications of broadly implemented screening for all patients across treatment settings are discussed.
We previously developed a reliable and valid method for classifying the intensity of pediatric cancer treatment. The Intensity of Treatment Rating Scale (ITR-2.0)  classifies treatments into four operationally defined levels of intensity and is completed by pediatric oncology specialists based on diagnosis, stage, and treatment data from the medical record. Experience with the ITR-2.0 and recent changes in treatment protocols indicated the need for a minor revision and revalidation.
Five criterion raters reviewed the prior items, independently proposing additions and/or changes in the classification of diseases/treatments. Subsequent to a group discussion of the proposed changes, a revised 43 item ITR was evaluated. Pediatric oncologists (n = 47) completed a two-part online questionnaire. Validity of the classifications was determined by the oncologists classifying each disease/treatment into one of the four levels of intensity. Inter-rater reliability was calculated by having each oncologist classify the treatments of 12 sample patients using the new version which we call the ITR-3.
Agreement between median ratings of the 43 items for the pediatric oncologists and the criterion raters was high (r = 0.88). The median of the raters was either identical (81%) with the criterion ratings or discrepant by one level. Inter-rater reliability was very high when using the ITR-3 to classify 12 sample patients, with a median agreement of 0.90 and an intraclass correlation coefficient (rICC = 0.86).
With these minor modifications and updates, the ITR-3 remains a reliable and valid method for classifying pediatric oncology treatment protocols.
pediatric oncology; measurement; treatment intensity; rating
Purpose: The goal of this study was to identify profiles of young adult (YA)-aged cancer survivors' beliefs about their health and well-being. Survivors' beliefs and their associated psychosocial and demographic characteristics may be clinically useful in survivorship care. Patients and methods: YA survivors of pediatric leukemias (n=51), lymphomas (n=24), and solid tumors (n=44), aged 18–29 years old (N=119), were categorized using cluster analysis based on their responses to the Health Competence Beliefs Inventory, a measure assessing beliefs about their health, satisfaction with healthcare, autonomy, and cognitive competence. Profiles of beliefs generated by cluster analysis were examined using self-report measures of health problems, distress, demographics, and provider-reported health problems and cancer treatment intensity. Results: Three distinct clusters were identified: Adaptive (n=54), Low Autonomy (n=25), and Vulnerable (n=40). Adaptive survivors had positive beliefs, low distress, and minimal health problems. The Low Autonomy survivors were similar to those in the Adaptive cluster except they had low autonomy beliefs and the majority reported living with their parents. The Vulnerable cluster had more negative beliefs, the most medical problems, and the highest levels of distress. Conclusion: Health competence belief profiles identified unique subsets of YA survivors of pediatric cancer that have potentially distinct risk factors. Categorizing survivors by health belief patterns may help healthcare providers treat and educate their patients in ways that are tailored to individual survivors' needs and risks.
survivorship; health beliefs; developmental outcomes; psychological outcomes
The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes.
Patients and Methods
AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems.
There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs.
AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.
In addition to the potential for ongoing health concerns, adolescent and young adult (AYA) childhood cancer survivors frequently report posttraumatic stress symptoms (PTSS). The current study examines whether beliefs about health moderate the relationship between the number of health problems and PTSS 2 months later in 140 survivors. Beliefs, as measured by scales of the Health Competence Beliefs Inventory (HCBI), negatively related to PTSS while health problems positively related to PTSS. Three scales of the HCBI-health perceptions, satisfaction with healthcare and cognitive competence—were significant moderators. The relationship between health problems and PTSS was stronger in the presence of less adaptive beliefs. These beliefs represent potentially malleable intervention targets for reducing PTSS in childhood cancer survivors.
Posttraumatic stress; Cancer; Beliefs; Health problems
Adolescent and young adult survivors of childhood cancer are a vulnerable population. Health beliefs may be related to necessary follow-up care.
This study seeks to develop a measure of health beliefs for adolescents and young adults with and without a history of cancer.
Inductive and deductive methods and focus groups were used to develop the Health Competence Beliefs Inventory. Cancer survivors (n=138) and comparison participants (n=130) completed the Health Competence Beliefs Inventory and other measures. Healthcare providers reported current medical problems.
A series of iterative exploratory factor analyses generated a 21-item four-factor solution: (1) Health Perceptions; (2) Satisfaction with Healthcare; (3) Cognitive Competence; and (4) Autonomy. Survivors reported significantly different Health Competence Beliefs Inventory scale scores than comparisons (p<.05). The Health Competence Beliefs Inventory was associated with beliefs, affect, quality of life, posttraumatic stress symptoms, and medical problems.
The Health Competence Beliefs Inventory is a promising measure of adolescent and young adult perceptions of health and well-being.
Cancer; Survivorship; Young adults; Psychological outcomes; Health; Beliefs
It is widely accepted that families are integral to biopsychosocial, social ecological, and other systemic approaches for understanding families and pediatric health. Pediatric psychologists are among the strongest advocates for families. At the same time, families pose challenges that we (pediatric psychology as a field) struggle with in terms of theoretical conceptualizations, assessment and intervention approaches, and training. We primarily use individual frameworks in our practice and research. In this brief commentary, prompted by the report of accomplishments in evidence-based family assessment in pediatric psychology (Alderfer et al., 2007), I outline some of the background for an implicit “challenge” to our field to advance our family orientation and provide some concrete ideas about next steps.
Childhood cancer has long-term implications for survivors and their family members. While the impact of cancer on the family continues into adulthood, little research exists on family-related issues during this important developmental period. In order to advance our understanding of families of adolescent and young adult (AYA) childhood cancer survivors, a measure of health-related beliefs for parents of AYA cancer survivors was developed. Exploratory factor analysis based on the mothers' data was used to identify four factors among 23 items: Social Competence, Satisfaction with Healthcare, Health Perceptions, and Health Apprehension. The scales are associated with psychological distress, quality of life, and posttraumatic stress symptoms but unrelated to age of the child at diagnosis and cancer treatment intensity. The beliefs identified in this study are consistent with clinical observations of families of young adult survivors and provide indications for the importance of ongoing attention to the families of childhood cancer survivors.
beliefs; childhood cancer; survivors; families; parents; adolescents; young adults
Recent studies have found that a subset of young adult survivors of childhood cancer report posttraumatic stress symptoms in response to their diagnosis and treatment. However, it is unclear if these symptoms are associated with impairment in daily functions and/or significant distress, thereby resulting in a clinical disorder. Furthermore, it is unknown whether this disorder continues into very long-term survivorship, including the 3rd and 4th decades of life. This study hypothesized that very long-term survivors of childhood cancer would be more likely to report symptoms of posttraumatic stress disorder, with functional impairment and/or clinical distress, compared to a group of healthy siblings.
Patients and Methods
6,542 childhood cancer survivors over the age of 18 who were diagnosed between 1970 and 1986 and 368 siblings of cancer survivors completed a comprehensive demographic and health survey.
589 survivors (9%) and 8 siblings (2%) reported functional impairment and/or clinical distress in addition to the set of symptoms consistent with a full diagnosis of Posttraumatic Stress Disorder (PTSD). Survivors had more than a four-fold risk of PTSD compared to siblings (OR=4.14, 95%CI: 2.08-8.25). Controlling for demographic and treatment variables, increased risk of PTSD was associated with educational level of high school or less (OR=1.51, 95% CI=1.16-1.98), being unmarried (OR=1.99, 95% CI=1.58-2.50), annual income less than $20,000 (OR=1.63, 95% CI=1.21-2.20), and being unemployed (OR=2.01, 95% CI=1.62-2.51). Intensive treatment was also associated with increased risk of full PTSD (OR=1.36, 95% CI 1.06 -1.74).
Posttraumatic stress disorder is reported significantly more often by childhood cancer survivors than by sibling controls. Although most survivors are apparently doing well, a subset report significant impairment that may warrant targeted intervention.
childhood cancer; young adult
Increasing numbers of childhood cancer survivors are seen in primary care settings as young adults. It is unknown how their self-reported health problems differ from those of healthy young adults. Self-reported health problems of cancer survivors and healthy controls are compared in this study.
156 cancer survivors visiting a cancer survivorship program and 138 controls in primary care centers (mean age of 20 years) completed the Health Knowledge Inventory (HKI), a checklist of 35 health problems.
Cancer survivors reported significantly more health problems than healthy controls (5.6 vs 2.6 problems, p < .001). For cancer survivors, more intense treatment and older age related to Organic/Major problems and Constitutional/Other problems. Female gender related to report of Organic/Major and Constitutional/Other problems for the controls. While at least 20% of both healthy controls and survivors endorsed dermatologic, headache, gastrointestinal and weight problems, survivors endorsed growth, thyroid, kidney, immunological, heart, and fertility problems fourfold over controls.
Cancer survivors endorse significantly more health problems than healthy controls. However, some problems are reported with equal frequency among the groups. Understanding these similarities and differences between survivors and healthy controls will facilitate patient-centered comprehensive care for young adult cancer survivors.
health problems; childhood cancer survivors; young adults; checklist; primary care
The purpose of this study was to investigate family functioning and relationships between family functioning and posttraumatic stress disorder in adolescent survivors of childhood cancer. To assess family functioning, 144 adolescent cancer survivors 1 to 12 years post-cancer treatment (M=5.3 years) and their parents completed the Family Assessment Device (FAD). To assess Posttraumatic Stress Disorder (PTSD), adolescents were administered a structured diagnostic interview. Nearly half (47%) of the adolescents, one-fourth (25%) of mothers, and one-third (30%) of fathers reported poor family functioning, exceeding the clinical cut-off on four or more FAD subscales. Families in which the cancer survivor had PTSD (8% of the sample) had poorer functioning than other families in the areas of problem-solving, affective responsiveness and affective involvement. Three-fourths of the adolescents with PTSD arose from families with categorically poor family functioning. A surprisingly high rate of poor family functioning was reported in these families of adolescent cancer survivors. Adolescents with PTSD were over five times as likely to emerge from a poorly functioning family compared to a well-functioning one. This study provides evidence that family functioning is related to cancer-related posttraumatic reactions in adolescent survivors.
cancer survivors; adolescents; family functioning; posttraumatic stress
Objective To report acceptability, feasibility, and outcome data from a randomized clinical trial (RCT) of a brief intervention for caregivers of children newly diagnosed with cancer. Method Eighty-one families were randomly assigned following collection of baseline data to Intervention or Treatment as Usual (TAU). Recruitment and retention rates and progression through the protocol were tracked. Measures of state anxiety and posttraumatic stress symptoms served as outcomes. Results Difficulties enrolling participants included a high percentage of newly diagnosed families failing to meet inclusion criteria (40%) and an unexpectedly low participation rate (23%). However, movement through the protocol was generally completed in a timely manner and those completing the intervention provided positive feedback. Outcome data showed no significant differences between the arms of the RCT. Conclusions There are many challenges inherent in conducting a RCT shortly after cancer diagnosis. Consideration of alternative research designs and optimal timing for interventions are essential next steps.
anxiety; caregivers; intervention; parents; pediatric cancer; posttraumatic stress; randomized clinical trial
Psychometric properties of the Psychosocial Assessment Tool 2.0 (PAT2.0), a brief screener for psychosocial risk in families of children with cancer, are presented.
Female (N =132) and male (N =72) caregivers of 141 children newly diagnosed with cancer completed the PAT2.0 and measures of child behavior symptoms, anxiety, acute stress, and family functioning to establish validity. Internal consistency and test–retest reliability of the PAT2.0 were also examined.
Internal consistency and two-week test–retest for the PAT2.0 Total score was strong. Validity for the PAT2.0 was supported by significant correlations between the PAT2.0 subscales and measures of corresponding constructs. PAT2.0 Total scores were correlated with acute stress and child behavior symptoms for both mothers and fathers. Receiver-Operating Characteristic curves provided preliminary support for the proposed cutoffs.
The PAT2.0 Total score is a useful screening tool for family psychosocial risk in the pediatric oncology population.
assessment; families; parents; pediatric oncology; risk
The diagnosis of a life-threatening illness in a child is one of the most stressful events imaginable for parents and is associated with increased anxiety and distress. Despite associations between stress and immune function in animal and human models, the immune function in caregivers of children at the time of a child-related potentially traumatic event, like cancer, is not known.
Nineteen parents (11 mothers, 8 fathers), representing six caregiver pairs, provided blood for natural killer (NK) cell count by flow cytometry and function assays [% NK whole blood, absolute NK whole blood, LU20 (lytic unit) peripheral blood mononuclear cells, LU20 NK cells] and completed self-report measures (acute stress) within 2 weeks of learning their child had cancer. The NK cell assay was also completed with a sample of healthy adults, the immune reference group.
There were similar levels of NK cell activity between caregivers and the immune reference group. Immune level and psychological outcomes were not associated. LU20 peripheral blood mononuclear cells and LU20 NK cells were each correlated at r = 0.83 between mothers and fathers in the same family.
Although based on a small sample, these preliminary results suggest that knowledge about stress responses in parents of children with life-threatening illness may be important and provide novel data regarding the shared impact of stress on immune function within caregiver dyads.
Pediatric cancer; Natural killer cell; Immune function; Caregivers; Acute stress
Acute Stress Disorder (ASD) and subclinical symptoms of acute stress (SAS) may be a useful framework for understanding the psychological reactions of mothers and fathers of children newly diagnosed with a pediatric malignancy.
Patients and Methods
Mothers (N = 129) and fathers (N = 72) of 138 children newly diagnosed with cancer completed questionnaires assessing acute distress, anxiety, and family functioning. Demographic data were also gathered. Inclusion criteria were: a confirmed diagnosis of a pediatric malignancy in a child under the age of 18 years without prior chronic or life threatening illness and fluency in English or Spanish.
Descriptive statistics and multiple linear regressions were used to examine predictors of SAS. Fifty-one percent (N = 66) of mothers and 40% (N = 29) of fathers met DSM-IV diagnostic criteria for ASD. The majority of the sample reported experiencing at least one SAS. General anxiety, but not family functioning, was a strong predictor of SAS in both mothers and fathers even after controlling for demographic characteristics.
Immediately following their child’s diagnosis of cancer, most mothers and fathers experience SAS, with a subsample meeting criteria for ASD. More anxious parents are at heightened risk of more intense reactions. The findings support the need for evidence-based psychosocial support at diagnosis and throughout treatment for families who are at risk for acute distress reactions.
pediatric oncology; acute stress disorder; parents; traumatic stress
The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI).
Seven centers recruited pediatric patients (8–18 years of age) with heart disease (HD) and their parents to complete the PCQLI and generic health-related quality of life (Pediatric Quality of Life Inventory [PedsQL]) and non–quality of life (Self-Perception Profile for Children [SPPC]/Self-Perception Profile for Adolescents [SPPA] and Youth Self-Report [YSR]/Child Behavior Checklist [CBCL]) tools. PCQLI construct validity was assessed through correlations of PCQLI scores between patients and parents and with severity of congenital HD, medical care utilization, and PedsQL, SPPC/SPPA, and YSR/CBCL scores. PCQLI test-retest reliability was evaluated.
The study enrolled 1605 patient-parent pairs. Construct validity was substantiated by the association of lower PCQLI scores with Fontan palliation and increased numbers of cardiac operations, hospital admissions, and physician visits (P < .001); moderate to good correlations between patient and parent PCQLI scores (r = 0.41–0.61; P <.001); and fair to good correlations between PCQLI total scores and PedsQL total (r = 0.70–0.76), SPPC/SPPA global self-worth (r = 0.43–0.46), YSR/CBCL total competency (r = 0.28–0.37), and syndrome and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-oriented scale (r = −0.58 to −0.30; P < .001) scores. Test-retest reliability correlations were excellent (r = 0.78–0.90; P < .001).
PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD and may be useful for future research and clinical management. Pediatrics 2010;126:498–508
congenital heart disease; acquired heart disease; health-related quality of life; reliability; validity
The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific, health-related quality of life (HRQOL) measure for pediatric heart disease (HD). The purpose of this study was to demonstrate the external validity of PCQLI scores.
The PCQLI development site (Development sample) and six geographically diverse centers in the United States (Composite sample) recruited pediatric patients with acquired or congenital HD. Item response option variability, scores [Total (TS); Disease Impact (DI) and Psychosocial Impact (PI) subscales], patterns of correlation, and internal consistency were compared between samples.
A total of 3,128 patients and parent participants (1,113 Development; 2,015 Composite) were analyzed. Response option variability patterns of all items in both samples were acceptable. Inter-sample score comparisons revealed no differences. Median item–total (Development, 0.57; Composite, 0.59) and item–subscale (Development, DI 0.58, PI 0.59; Composite, DI 0.58, PI 0.56) correlations were moderate. Subscale–subscale (0.79 for both samples) and subscale–total (Development, DI 0.95, PI 0.95; Composite, DI 0.95, PI 0.94) correlations and internal consistency (Development, TS 0.93, DI 0.90, PI 0.84; Composite, TS 0.93, DI 0.89, PI 0.85) were high in both samples.
PCQLI scores are externally valid across the US pediatric HD population and may be used for multi-center HRQOL studies.
Health-related quality of life; Pediatrics; Congenital heart disease; Acquired heart disease; External validity
Survivors of childhood cancer whose malignancy and/or treatment involved the central nervous system may demonstrate a consistent pattern of neurocognitive deficits. The present study evaluated a randomized clinical trial of the Cognitive Remediation Program (CRP). Participants were 6- to 17-year-old survivors of childhood cancer (N = 161; 35% female, 18% Hispanic, 10% African American, 64% Caucasian, 8% other) who were at least 1 year off treatment and who manifested an attentional deficit. They were enrolled at 7 sites nationwide. Two thirds of the participants were randomly assigned to cognitive remediation. All participants were assessed using a battery of academic achievement/neurocognitive tests and parent/teacher measures of attention. The CRP resulted in parent report of improved attention and statistically significant increases in academic achievement. Effect sizes were modest but were comparable with those for other clinical trials of brain injury rehabilitation and for psychological interventions in general. The CRP is presented as a potentially beneficial treatment for many survivors of pediatric cancer. Long-term clinical significance remains unproven. Further work is needed to improve effect sizes and treatment compliance and to address the needs of other populations with pediatric brain injury.
brain injury rehabilitation; childhood cancer/treatment; clinical interventions