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2.  Family Rituals and Quality of Life in Children With Cancer and Their Parents: The Role of Family Cohesion and Hope 
Journal of Pediatric Psychology  2015;40(7):664-671.
Objective Family rituals are associated with adaptive functioning in pediatric illness, including quality of life (QoL). This article explores the role of family cohesion and hope as mediators of this association in children with cancer and their parents. Methods Portuguese children with cancer (N = 389), on- and off-treatment, and one of their parents completed self-report measures. Structural equation modeling was used to examine direct and indirect links between family rituals and QoL. Results When children and parents reported higher levels of family rituals, they also reported more family cohesion and hope, which were linked to better QoL. At the dyadic level, children’s QoL was related to parents’ family rituals through the child’s family cohesion. This model was valid across child’s age-group, treatment status, and socioeconomic status. Conclusions Family rituals are important in promoting QoL in pediatric cancer via family cohesion and hope individually and via family cohesion in terms of parent–child interactions.
PMCID: PMC4542831  PMID: 25775914
families; hope; parents; pediatric cancer; quality of life
3.  The Social Functioning of Siblings of Children With Cancer: A Multi-Informant Investigation 
Journal of Pediatric Psychology  2014;40(3):309-319.
Objective This study examined social functioning among siblings of children with cancer. Method A case–control design was applied to school- and home-based data from multiple informants (peers, teachers, mothers, and self). Social reputation and peer acceptance within the classroom was compared for 87 siblings (aged 8–16 years) and 256 demographically matched peers. Self-perceptions of peer relationships and parent-reported social competence were examined among 67 siblings and 67 matched comparisons.  Results Peer reports (N = 1,633) indicated no differences between siblings and comparisons for social reputation, number of friendships, reciprocated friendships, or peer acceptance. Self-reported prosocial behavior and teacher-reported likability were higher for siblings than comparisons. Self-reported loneliness, friendship quality, and perceived social support did not differ between groups. Mothers reported less involvement in activities and poorer school performance for siblings than comparisons. Conclusions Peer relationships of siblings of children with cancer are similar to classmates, though they experience small decrements in activity participation and school performance.
PMCID: PMC4366447  PMID: 25256156
childhood cancer; peer relationships; siblings; social functioning
4.  Social Competence in Pediatric Brain Tumor Survivors: Application of a Model from Social Neuroscience and Developmental Psychology 
Pediatric blood & cancer  2014;62(3):375-384.
Pediatric brain tumor (BT) survivors are at risk for psychosocial late effects across many domains of functioning, including neurocognitive and social. The literature on the social competence of pediatric BT survivors is still developing and future research is needed that integrates developmental and cognitive neuroscience research methodologies to identify predictors of survivor social adjustment and interventions to ameliorate problems. This review discusses the current literature on survivor social functioning through a model of social competence in childhood brain disorder and suggests future directions based on this model. Interventions pursuing change in survivor social adjustment should consider targeting social ecological factors.
PMCID: PMC4304946  PMID: 25382825
brain tumor; survivorship; late effects; social competence
5.  Why Mothers Accompany Adolescent and Young Adult Childhood Cancer Survivors to Follow-up Clinic Visits 
Parents often accompany adolescent and young adult (AYA) pediatric cancer survivors to follow-up oncology clinic visits and remain involved in their care, although little is known about their reasons for doing so.
This mixed methods (qualitative–quantitative) study of 76 mothers of AYA survivors of childhood cancer uses content analysis and logistic regression to identify and explore reasons mothers provided for coming to the visit. Demographic and treatment data are examined as potentially explanatory factors.
Ten reasons (in decreasing order of frequency) were derived: Concern for Child’s Health and Well-Being, Practical Support, Transportation, Familial Experience, General Support, Companionship, Personal Interest in Follow-up Care, Characteristics of their Child, Emotional Support, and Parental Duty. The reasons were not related to demographic or treatment factors.
Mothers accompany AYAs to survivorship clinic for both maternal/family-focused and survivor-focused reasons that can be incorporated in survivorship and transition care to reflect ongoing communications among survivors, parents, and health care teams.
PMCID: PMC4479174  PMID: 24451909
adolescent and young adult; follow-up care; parents; survivorship; childhood cancer
6.  Parent Perspectives on Family-Based Psychosocial Interventions in Pediatric Cancer: A Mixed-Methods Approach 
Family-based interventions in pediatric cancer face challenges associated with integrating psychosocial care into a period of intensive treatment and escalating stress. Little research has sought input from parents on the role of interventions delivered shortly after diagnosis. This mixed-methods study obtained parents’ perspectives on the potential role of family-based interventions. Twenty-five parents provided feedback on the structure and timing of psychosocial interventions via focus groups and a questionnaire. Qualitative analyses resulted in three themes that were illustrative of a traumatic stress framework: 1) tension between focusing on child with cancer and addressing other family needs, 2) factors influencing parents’ perception of a shared experience with other parents, and 3) the importance of matching interventions to the trajectory of parent adjustment. Quantitative data indicated that parents preferred intervention within six months of diagnosis, with almost half favoring within two months of diagnosis, and the majority wanted interventions targeted to parents only. Qualitative themes highlight the importance of using a traumatic stress framework to inform the development of family-based interventions for those affected by pediatric cancer.
PMCID: PMC3969770  PMID: 24337762
pediatric cancer; oncology; psychosocial intervention; families; traumatic stress
7.  Prospectively Examining Physical Activity in Young Adult Survivors of Childhood Cancer and Healthy Controls 
Pediatric blood & cancer  2012;60(2):309-315.
This study compares young adult survivors of childhood cancer (YASCC) and young adults without a history of serious illness/injury on physical activity levels and examines psychological predictors of physical activity in survivors over a two month period.
YASCC participants (n = 117) and healthy controls (n = 148), ages 18–30, recruited during cancer survivorship clinic or primary care clinics completed self-report measures of physical activity, health problems, psychological distress, and health beliefs (Health Perceptions, Satisfaction with Healthcare, Cognitive Competence, Autonomy). Survivorship providers completed ratings of health problems and treatment intensity for survivors.
Survivors had significantly lower levels of physical activity than controls. Family income, survivor-reported health problems and less positive health beliefs were associated with lower rates of physical activity. Provider-reported survivor health problems and ratings of cancer treatment intensity were not related to survivor physical activity. Less positive survivor beliefs about their cognitive competence predicted survivor physical activity two months later after accounting for other pertinent demographic, medical and psychological variables.
YASCC were significantly less active than healthy controls. YASCC with more self-identified health problems and negative beliefs about their cognitive competence were less physically active. Beliefs about their health and cognitive competencies may be viable areas for assessment and intervention in order to promote increased engagement in physical activity.
PMCID: PMC3391612  PMID: 22434746
survivorship; long-term survival; psychology; psychosocial health behaviors
8.  Screening for Psychosocial Risk in Pediatric Cancer 
Pediatric blood & cancer  2012;59(5):822-827.
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.
PMCID: PMC3396795  PMID: 22492662
9.  A Revision of the Intensity of Treatment Rating Scale: Classifying the Intensity of Pediatric Cancer Treatment 
Pediatric blood & cancer  2011;59(1):96-99.
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) [1] 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.
PMCID: PMC3223269  PMID: 21858914
pediatric oncology; measurement; treatment intensity; rating
10.  Profiles of Health Competence Beliefs Among Young Adult Survivors of Childhood Cancer 
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.
PMCID: PMC3623565  PMID: 23610738
survivorship; health beliefs; developmental outcomes; psychological outcomes
11.  Parental Hopeful Patterns of Thinking, Emotions, and Pediatric Palliative Care Decisionmaking: A Prospective Cohort Study 
Archives of pediatrics & adolescent medicine  2010;164(9):10.1001/archpediatrics.2010.146.
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.
Main Exposures
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.
PMCID: PMC3856654  PMID: 20819965
12.  Psychological Outcomes and Health Beliefs in Adolescent and Young Adult Survivors of Childhood Cancer and Controls 
Journal of Clinical Oncology  2010;28(12):2002-2007.
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.
PMCID: PMC2860405  PMID: 20231679
13.  Conducting a Randomized Clinical Trial of an Psychological Intervention for Parents/Caregivers of Children with Cancer Shortly after Diagnosis 
Journal of Pediatric Psychology  2008;34(8):803-816.
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.
PMCID: PMC2734126  PMID: 19091806
anxiety; caregivers; intervention; parents; pediatric cancer; posttraumatic stress; randomized clinical trial
14.  The Psychosocial Assessment Tool (PAT2.0): Psychometric Properties of a Screener for Psychosocial Distress in Families of Children Newly Diagnosed with Cancer 
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.
PMCID: PMC2819976  PMID: 17609228
assessment; families; parents; pediatric oncology; risk
15.  Innate Immune Markers in Mothers and Fathers of Children Newly Diagnosed with Cancer 
Neuroimmunomodulation  2008;15(2):102-107.
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.
PMCID: PMC2811162  PMID: 18679048
Pediatric cancer; Natural killer cell; Immune function; Caregivers; Acute stress
16.  Acute Stress in Parents of Children Newly Diagnosed With Cancer 
Pediatric blood & cancer  2008;50(2):289-292.
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.
PMCID: PMC2811161  PMID: 17514742
pediatric oncology; acute stress disorder; parents; traumatic stress
17.  Commentary: Progress and Challenges in Evidence-based Family Assessment in Pediatric Psychology 
Journal of Pediatric Psychology  2008;33(9):1062-1064.
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.
PMCID: PMC2639488
18.  The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in Adolescent and Young Adult Cancer Survivors 
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.
PMCID: PMC3420807  PMID: 21964825
Posttraumatic stress; Cancer; Beliefs; Health problems
19.  Development and Validation of the Health Competence Beliefs Inventory in Young Adults With and Without a History of Childhood Cancer 
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.
PMCID: PMC3420814  PMID: 20936390
Cancer; Survivorship; Young adults; Psychological outcomes; Health; Beliefs
20.  Validation of the Pediatric Cardiac Quality of Life Inventory 
Pediatrics  2010;126(3):498-508.
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
PMCID: PMC3418527  PMID: 20805147
congenital heart disease; acquired heart disease; health-related quality of life; reliability; validity
21.  External validity of the pediatric cardiac quality of life inventory 
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.
PMCID: PMC3418540  PMID: 21188538
Health-related quality of life; Pediatrics; Congenital heart disease; Acquired heart disease; External validity
23.  Measuring health-related beliefs of mothers of adolescent and young adult childhood cancer survivors 
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.
PMCID: PMC3143683  PMID: 21417524
beliefs; childhood cancer; survivors; families; parents; adolescents; young adults
24.  Prevalence and Predictors of Posttraumatic Stress Disorder in Adult Survivors of Childhood Cancer: a report from the Childhood Cancer Survivor Study 
Pediatrics  2010;125(5):e1124-e1134.
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.
PMCID: PMC3098501  PMID: 20435702
childhood cancer; young adult
25.  Self-Reported Health Problems of Young Adults in Clinical Settings: Survivors of Childhood Cancer and Healthy Controls 
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.
PMCID: PMC2868275  PMID: 20453176
health problems; childhood cancer survivors; young adults; checklist; primary care

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