Mary Jo Kupst

The Future of Pediatrics: Mental Health Competencies for Pediatric Primary Care

Pediatric primary care clinicians have unique opportunities and a growing sense of responsibility to prevent and address mental health and substance abuse problems in the medical home. In this report, the American Academy of Pediatrics proposes competencies requisite for providing mental health and substance abuse services in pediatric primary care settings and recommends steps toward achieving them. Achievement of the competencies proposed in this statement is a goal, not a current expectation. It will require innovations in residency training and continuing medical education, as well as a commitment by the individual clinician to pursue, over time, educational strategies suited to his or her learning style and skill level. System enhancements, such as collaborative relationships with mental health specialists and changes in the financing of mental health care, must precede enhancements in clinical practice. For this reason, the proposed competencies begin with knowledge and skills for systems-based practice. The proposed competencies overlap those of mental health specialists in some areas; for example, they include the knowledge and skills to care for children with attention-deficit/hyperactivity disorder, anxiety, depression, and substance abuse and to recognize psychiatric and social emergencies. In other areas, the competencies reflect the uniqueness of the primary care clinicians role: building resilience in all children; promoting healthy lifestyles; preventing or mitigating mental health and substance abuse problems; identifying risk factors and emerging mental health problems in children and their families; and partnering with families, schools, agencies, and mental health specialists to plan assessment and care. Proposed interpersonal and communication skills reflect the primary care clinicians critical role in overcoming barriers (perceived and/or experienced by children and families) to seeking help for mental health and substance abuse concerns.

Infant end-of-life care: the parents' perspective

Objective:The purpose of this study was to identify factors important to parents in their infants end-of-life care.Study Design:Participants were parents (n=19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infants end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS).Results:Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers.Conclusions:Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

Unrelated donor bone marrow transplantation to treat severe aplastic anaemia in children and young adults

Alternative donor bone marrow transplantation (BMT) to treat severe aplastic anaemia (SAA) in children and young adults has been complicated by high rates of graft rejection and severe graft‐versus‐host disease (GVHD). We hypothesized that increased immunosuppression combined with T‐cell depletion of the marrow graft would enable successful use of unrelated donor BMT in this disease. Preconditioning consisted of cytosine arabinoside, cyclophosphamide, and total body irradiation (TBI). T‐cell depletion was with the anti‐CD3 antibody T10B9. GVHD prophylaxis consisted of cyclosporine A. 28 previously transfused patients were transplanted. Nine donor/recipient pairs were HLA matched. As of 1 January 1996, 15/28 (54%) patients are alive, transfusion independent and well with a range of follow‐up of 13 months to 8 years (median 2.75 years). Fatalities include all three patients with non‐engraftment and all three patients with grade III/IV GVHD. Other fatalities were due to infections or therapy‐related toxicity. The incidence ≥ grade II acute GVHD was 28%. These data show that in children with SAA who have failed immunosuppression, unrelated donor BMT offers a reasonable hope of long‐term survival.

Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue

Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence‐based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15 standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE II process to evaluate the quality of the evidence. This article describes the methods used to develop the standards and introduces the 15 articles included in this special issue. Established standards help ensure that all children with cancer and their families receive essential psychosocial care. Pediatr Blood Cancer

Cognitive and psychosocial functioning of pediatric hematopoietic stem cell transplant patients: a prospective longitudinal study.

A prospective longitudinal study of cognitive and psychosocial functioning in pediatric hematopoietic stem cell transplant (HSCT) patients was conducted on three occasions: pre-HSCT, 1 year post-HSCT, and 2 years post-HSCT. In contrast to the previous hypothesis that cognitive declines would occur as a result of HSCT treatment, it was hypothesized that (1) global cognitive functioning (IQ scores), as well as specific areas would remain stable over time; (2) pre-transplant functioning would be predictive of later functioning; and (3) age would be negatively related to cognitive functioning. Based on previous research it was further hypothesized: that (4) while declines in psychosocial functioning might be seen at 1 year, functioning would improve by 2 years. 153 children and adolescents were evaluated pre-HSCT and at 1 year, with 2 year data available for 74 children. Longitudinal analyses of Wechsler IQ data were completed on 100 children (longitudinal exact test) and 52 children (repeated measures analysis of variance. Results of cognitive assessment indicated (1) stability of IQ scores over time; and (2) that the strongest predictor was pre-HSCT cognitive functioning. Psychosocial assessment results indicated: (1) a low prevalence of behavioral and social problems; (2) stability in functioning over time; (3) pre-HSCT functioning strongly predictive of later functioning.

Measuring Fatigue for Children With Cancer: Development and Validation of the Pediatric Functional Assessment of Chronic Illness Therapy-fatigue (pedsfacit-f)

Fatigue is a major concern for cancer patients of all ages. The lack of an appropriate assessment tool has impeded our understanding of its prevalence and significance, specifically in the pediatric cancer population. This paper documents the reliability and validity of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F) in a comprehensive manner. The 11-item PedsFACIT-F was developed via literature review, feedback from patient/parent/clinician, and a face-to-face consensus meeting. Its reliability and validity were examined on the basis of data from 159 pediatric patients with cancer via classical test theory and Rasch analysis. Results showed that the pedsFACIT-F demonstrated good internal consistency (Cronbach α), acceptable item-total correlations, and met the unidimensionality assumption set by confirmatory factor analysis. All items had acceptable fit statistics in the Rasch analysis and demonstrated stable measurement properties by age, sex, and cancer type. Scores on the pedsFACIT-F significantly discriminated between patients with and without anemia and among patients with different functional status; clinically relevant minimally important differences were estimated accordingly. The pedsFACIT-F was significantly correlated to the PedsQL Multidimensional Fatigue Scale. In conclusion, the pedsFACIT-F demonstrates satisfactory reliability and validity and can be a useful tool in clinical trials and other research.

Psychosocial Assessment as a Standard of Care in Pediatric Cancer

This paper presents the evidence for a standard of care for psychosocial assessment in pediatric cancer. An interdisciplinary group of investigators utilized EBSCO, PubMed, PsycINFO, Ovid, and Google Scholar search databases, focusing on five areas: youth/family psychosocial adjustment, family resources, family/social support, previous history/premorbid functioning, and family structure/function. Descriptive quantitative studies, systematic reviews, and meta‐analyses (n = 149) were reviewed and evaluated using grading of recommendations, assessment development, and evaluation (GRADE) criteria. There is high quality evidence to support a strong recommendation for multifaceted, systematic assessments of psychosocial health care needs of youth with cancer and their families as a standard of care in pediatric oncology. Pediatr Blood Cancer

Factors associated with parental activation in pediatric hematopoietic stem cell transplant

Patient activation, the extension of self-efficacy into self-management, is an essential component of effective chronic care. In pediatric populations, caregiver activation is also needed for proper disease management. This study investigates the relationships between parental activation and other characteristics of parent–child dyads (N = 198) presenting for pediatric hematopoietic stem cell transplant. Parental activation concerning their child’s health was assessed using the Parent Patient Activation Measure (Parent-PAM), a modified version of the well-validated Patient Activation Measure (PAM). Using hierarchical linear regression and following the Belsky process model for determining parenting behaviors, a multivariate model was created for parental activation on behalf of their child that showed that the parent’s age, rating of their own general health, self-activation, and duration of the child’s illness were significantly related to Parent-PAM score. Our findings characterize a potentially distinct form of activation in a parent–child cohort preparing for a demanding clinical course.

Sequences of staff-child interactions on a psychiatric inpatient unit

Six psychiatry inpatients were observed during mealtimes to determine and evaluate staff intervention techniques. To extend and further elaborate the findings of a previous work (Pines, Kupst, Natta, & Schulman, 1985), staff behaviors (positive, punitive, isolating, and neutral) were investigated for their potential relationship to subsequent child behaviors (positive, negative, and inactive) via a lag sequential analytic approach. Staff punitive and isolating behaviors tended to be associated with significant increases in the likelihood of subsequent child negative behaviors and with significant decreases in child positive behaviors. Staff positive behaviors tended not to be related to a subsequent increase or decrease in any of the coded child behaviors. Findings demonstrate the utility of assessing conditional probabilities of sequences of staff-child behaviors in psychiatric inpatients.

Family factors associated with academic achievement deficits in pediatric brain tumor survivors

The purpose of this study is to examine whether parental education, socioeconomic status, or family environment moderate the extent of academic achievement deficits in pediatric brain tumor survivors (PBTS) relative to classmate case‐controls. PBTS are known to be at risk for cognitive and academic impairment; however, the degree of impairment varies. Prior research has focused on treatment risk, and efforts to examine the protective role of family resources and relationships have been lacking.