VERITAS-PRN: a new measure of adherence to episodic treatment regimens in haemophilia.

Episodic treatment of bleeding disorders is defined as utilization of clotting factor concentrates in response to acute bleeding episodes to achieve haemostasis. Non-adherence to prescribed episodic regimens can limit treatment effectiveness and result in target joint formation, pain and disability. Evaluation of and interventions to promote adherence may improve health outcomes. The purpose of this study was to validate a new adherence scale developed for individuals with bleeding disorders treated on episodic infusion regimens, entitled VERITAS-PRN [Validated Hemophilia Regimen Treatment Adherence Scale - PRN]. Participants were recruited from the Indiana Hemophilia and Thrombosis Center patient population. Participants completed the scale for psychometric development and analysis. Subjective ratings of adherence from participants and providers were used for validation. The study sample included 51 male and three female patients. Twenty-seven participants (50.0%) were diagnosed with FVIII deficiency, 21 (38.9%) with FIX deficiency and six (11.1%) with von Willebrand's disease (VWD). Internal consistency reliability for the total VERITAS-PRN score and the majority of subscales was good-to-excellent, with the one exception being the 'Plan' subscale. Test-retest reliability correlations were good-to-excellent for the total scale and all subscales. The VERITAS-PRN total scale had moderate-to-strong and statistically significant correlations with validity measures. The VERITAS-PRN is a reliable and valid measure of adherence to episodic treatment regimens for bleeding disorders. This tool may be utilized as a standard measure of adherence to increase sensitivity to adherence problems and promote targeted interventions to enhance adherence and health outcomes.

Validity of the pediatric inpatient behavior scale in an inpatient psychiatric setting.

Standardized assessment of children's behavior during psychiatric hospitalization is increasingly important for evaluation, chart documentation, treatment planning, and outcome monitoring, yet little research has been done to validate the use of behavior checklists developed specifically to assess in-hospital behavior. The Pediatric Inpatient Behavior Scale (PIBS) was evaluated for its validity as a measure of behavior of children hospitalized on a psychiatric unit. Nurses completed the PIBS for 41 children, based on behavior observed during the first week of hospitalization. DSM-IV diagnoses and major symptoms were coded based on chart review, and children completed self-report measures of depression and anxiety. The Pediatric Inpatient Behavior Scale subscale scores were related significantly to diagnosis, as well as to major symptoms, correctly classifying 75 to 85% of cases. The Pediatric Inpatient Behavior Scale subscale scores also significantly correlated with self-reported symptoms of depression, but not symptoms of state anxiety. Results support the use of the PIBS as a behavioral instrument for hospitalized children with severe psychopathology.

Family functioning, neurocognitive functioning, and behavior problems in children with sickle cell disease.

OBJECTIVE: To investigate the independent and combined contributions of neurocognitive and family functioning to mother-reported behavior problems in children with sickle cell disease (SCD) and evaluate the factor structure of the Family Environment Scale (FES) with African American families. METHOD: The study sample included 289 children enrolled in the multisite Cooperative Study of Sickle Cell Disease. The study protocol included neuropsychological evaluation and brain magnetic resonance imaging (MRI) of the children, and mothers completed the Child Behavior Checklist and Family Environment Scale. RESULTS: With child and maternal demographic parameters controlled, conflicted family functioning, but not neurocognitive functioning, accounted for a significant portion of the variance in mother-reported behavior problems. The factor structure of the FES for families of children with SCD was found to be similar to that for other families. CONCLUSIONS: Family functioning may be a salient target for fostering adaptation to chronic childhood illness.

Psychological symptoms in chronic fatigue and juvenile rheumatoid arthritis.

OBJECTIVE: To determine if psychological morbidity in youth with chronic fatigue is caused by the stress of coping with a chronic illness. STUDY DESIGN: Case-control study comparing pediatric patients with debilitating chronic fatigue and matched subjects with juvenile rheumatoid arthritis, a chronic medical illness with similar functional sequelae. SETTING: Pediatric Infectious Diseases Clinic and Juvenile Rheumatoid Arthritis Clinic of Kosair Children's Hospital. PARTICIPANTS: Nineteen children and adolescents with debilitating chronic fatigue and 19 age- and sex-matched peers with juvenile rheumatoid arthritis. Outcome. Structured Interview, Kaufman Brief Intelligence Test, Child Behavior Checklist, and Youth Self-Report. RESULTS: Intellectual functioning on the Kaufman Brief Intelligence Test Composite was average (103, standard score) for both groups. Pediatric patients with chronic fatigue had higher levels of internalizing psychological distress than patients suffering from juvenile rheumatoid arthritis, despite the fact that both groups had a similar pattern of decline in social and physical activities. Duration of illness did not explain the difference in psychological symptoms. CONCLUSIONS: Psychological factors may play a more active role in debilitating chronic fatigue in pediatric patients than can be explained by the stress of coping with a similar chronic, non-life-threatening illness.

Parent relationships and compliance in cystic fibrosis.

INTRODUCTION: Marital adjustment, family characteristics, and parent-child stress and compliance with treatment were investigated in 41 families with a preadolescent child (age 3 to 11 years) who had cystic fibrosis (CF). METHOD: Mothers completed the Dyadic Adjustment Scale, the Family Adaptability and Cohesion Evolution Scale, and the short form of the Parenting Stress Index. Parents and medical staff completed questionnaires assessing the child's compliance with diet/nutritional intake, vitamins, pancreatic enzymes, other medications (such as oral antibiotics), and chest physiotherapy. RESULTS: Preadolescents with CF were viewed as generally cooperative with most aspects of treatment. Parental ratings of compliance with dietary and nutritional intake were associated with increased marital consensus and decreased parenting stress. Medical staff ratings of dietary compliance, medication compliance, and chest physiotherapy compliance were associated with lower parenting stress. DISCUSSION: Parent-child stress and lack of agreement between parents is associated with problems in compliance with treatment, which may have an adverse impact on the disease and health status of the child with CF.

Differential diagnosis of chronic fatigue in children: behavioral and emotional dimensions.

A battery of self-report questionnaires and structured diagnostic interviews was administered to 20 children and adolescents who presented to a pediatric specialty clinic with chronic fatigue. Matched groups of healthy and depressed control subjects (aged 8 to 19 years) were also studied. Criteria were established to identify those items in the assessment battery that reliably differentiated among the three groups. Analysis of item content suggested several clusters of characteristics that discriminated among the subject groups, including life changes, cognitive difficulties, negative self-attributions, social relationship disruption, and somatic symptom presentation. The results suggest that certain psychological factors can discriminate chronic fatigue from depressive symptomatology, as well as normal functioning. Items discriminating among groups are presented in an organized questionnaire format to assist with the understanding and assessment of pediatric chronic fatigue cases.

Psychological adjustment of children in the pretransplant phase of bone marrow transplantation: Relationships with parent distress, parent stress, and child coping.

Families of 22 children preparing to undergo bone marrow transplantation (BMT) provided information concerning parent-reported major negative life stress, child coping strategies, parental psychological symptomatology, and child adjustment. Immediately prior to BMT, children and families are confronted with multiple stresses which challenge the child's coping and strain the parents' ability to assist the child with coping. Hence, stress, parental adjustment (distress), and child coping may be important factors affecting the child's overall psychological adjustment. Results showed that 15-25% of children and parents experienced clinically significant levels of psychological distress. Parent and child psychological distress were closely related. Major negative life stresses experienced by the parent and use of avoidant coping by the child significantly predicted child adjustment problems in the pretransplant period. Coping skills interventions targeting avoidant coping and management of parental stress/distress may reduce child psychosocial risk prior to BMT.

Self-esteem and depressive symptomatology in children with somatoform disorders.

This study investigated levels of self-esteem and self-reported depressive symptomatology in a sample of children diagnosed with somatoform disorder. The somatoform sample, a sample of children with depressive disorders, and a sample of children with no DSM-III-R diagnosis differed significantly on measures of depression and self-esteem. Specifically, the somatoform group consistently scored between the depressed and no-diagnosis groups, although most of the statistically significant differences occurred between the depressed and no-diagnosis groups. Significant differences between the somatoform group and the other groups were found for behavioral self-esteem.

Case control study of chronic fatigue in pediatric patients.

OBJECTIVE: To determine the demographic characteristics, medical features, psychological profile, and natural history of children with chronic fatigue. DESIGN: Case control study. SETTING: Pediatric Infectious Diseases Clinic of Kosair Children's Hospital, 1990 to 1992. PARTICIPANTS: Forty-four patients referred for persistent fatigue were evaluated. Twenty patients participated in a psychological study; 20 healthy controls of similar age and gender were recruited from community pediatric practices and 20 matched depressed controls were recruited from university psychiatry services (subjects were treated as groups in the analyses). MEASURES: Demographic data were obtained for all referred patients. Those with fatigue for at least 2 months and no alternative diagnosis received a detailed history, physical, and battery of laboratory tests (complete blood count, sedimentation rate, chemistry panel, chest X-ray thyroid stimulating hormone, thyroxine, anti-nuclear antibodies, urinalysis, immunoglobulins, and Epstein-Barr virus (EBV), toxoplasma, and cytomegalovirus serologies). Psychological study participants completed the following: background structured interview; Kaufman Brief Intelligence Test; Children's Depression Inventory; Child Behavior Checklist; Youth Self Report; Diagnostic Interview for Children and Adolescents-Revised; mail-in follow-up survey. RESULTS: The median age of fatigue patients was 14.3 years; 60% were female, 96% white, and 87% from the mid/upper socioeconomic status (SES). Fatigue patients were demographically similar to 21 patients referred for infectious mononucleosis (IM) but were older than other clinic patients (P < .0001). White race (P = .0568) and mid/upper SES (P = .0403) were over-represented among fatigue patients compared to patients referred for other diagnoses. Of 36 patients meeting criteria for further study, 5 had an IM-like illness including evidence of recent EBV infection. For the remaining 31 patients, clinical and laboratory evaluations were unrevealing. Psychological study subjects reported marked declines in quality-of-life and scored high on measures of internalizing, withdrawal, and social isolation. Nine met diagnostic criteria for depression, although depressive symptoms were not as prominent as those reported by depressed controls. Fatigue subjects scored higher on somatization than both control groups. The follow-up survey indicated symptomatic improvement in most patients. CONCLUSIONS: Chronic fatigue was a common reason for referral, with over-representation of white children from mid/upper SES. After exclusion of EBV-associated IM, screening laboratory tests were not helpful in establishing specific organic diagnoses. Whereas the natural history was favorable, chronic fatigue resulted in major quality-of-life changes and was associated with significant levels of psychosocial distress. IMPLICATIONS: Psychological evaluation is warranted in these patients, as some may have treatable psychological conditions. Given the absence of proved medical therapies, psychosocial interventions to improve quality-of-life should be studied.

Use of hypnosis following training in a psychiatry residency and psychology internship program: a brief communication.

Despite growing numbers of internships and residencies offering training in hypnotherapy, no systematic attempt has been made to assess hypnotherapy beliefs and use among former trainees in these settings. This study investigated posttraining hypnotherapy use and effectiveness beliefs in a sample of 77 former psychiatry residents and psychology interns. Over 50% of the study sample had sought additional hypnotherapy training beyond the standard lectures and seminars, and almost 30% had attended external hypnotherapy workshops or presentations. Beliefs in hypnotherapy effectiveness were high, but use of hypnotherapy in clinical practice was very low. Former residents and interns who had received supervised training with patients, who had attended hypnosis workshops, and who had a colleague using hypnotherapy were more likely to use hypnotherapy following training.

Medical stress, appraised stress, and the psychological adjustment of mothers of children with myelomeningocele.

This study investigated the relationship between medical severity, stress appraisals, and psychological symptoms in a representative sample of mothers of children with myelomeningocele. Although these mothers may be at risk for the development of depression and anxiety problems, substantial variability in their psychological adjustment exists, perhaps due to differences in illness severity and stress appraisals. A sample of 66 mothers answered several questionnaires, including the Stress Questionnaire and SCL-90-R. Medical indexes reflecting severity were obtained from medical charts. Correlational analyses indicated no relationship between medical indexes and maternal adjustment. Appraised illness stress was not related to medical indexes but was significantly related to adjustment. Regression analyses including demographic, medical, and appraised stress variables accounted for 32% of the variance in adjustment. The findings suggest the importance of cognitive appraisal of stress as opposed to objective medical severity in the explanation of maternal psychological adjustment to myelomeningocele.

Psychological adaptation of mothers of children with spina bifida: association with dimensions of social relationships.

Investigated the hypothesis that dimensions of social relationships such as family support, conflict, and control; marital quality/support, social support, and social coping are associated with the psychological adjustment of mothers of children with spina bifida. A representative sample of 66 mothers answered a series of questionnaires including the Family Environment Scale. Dyadic Adjustment Scale, Social Support Questionnaire (6-item form), Social Coping Questionnaire, and SCL-90-R. Results indicated that mothers with more supportive families and marriages and less conflicted and controlling families reported lower levels of psychological symptoms. Coping strategies directed at friends were related to more symptoms.

The role of central nervous system functioning and family functioning in behavioral problems of children with myelodysplasia.

This study examined the frequency and type of behavioral problems in 50 children with myelodysplasia and investigated the hypothesized roles of central nervous system (CNS) functioning and family functioning in behavioral problem outcome. The findings revealed that 50% of the children with myelodysplasia had a behavioral problem pattern and another 2% had low social skills, yielding an overall problem pattern rate of 52%. There was a high frequency of internalizing behavior problem profiles and a very low frequency of externalizing behavior problem profiles. Although there was little support for the hypothesized mediating role of central nervous system functioning, considerable support was provided for the association of family functioning and behavior problem outcomes.