Development of a logic model to support a network approach in delivering 24/7 children's palliative care: part one.

AIM: This research aimed to develop and evaluate a 24/7 symptom-management service for children with life-limiting conditions and a model for palliative care nursing. STUDY DESIGN: A combination of audit and qualitative and quantitative evaluation. SAMPLE AND SETTING: A consultant nurse-led service (n=5 clinical nurse specialists) provided care and support to children and their families, which spanned a range of settings (home, hospital, hospice) supported by a managed clinical network of consultant paediatricians (n=4) with postgraduate expertise in palliative care. METHODS: A pluralistic evaluation was conducted where the predefined service standards were audited and the predetermined service objectives were evaluated using daily diary data from the nursing team (micro), qualitative and quantitative survey data of stakeholders using the service (mezzo) and family assessment of children's palliative care (CPC) standards across the CPC network (macro).

Development of a logic model to support a network approach in delivering 24/7 children's palliative care: part two.

BACKGROUND: This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service approach to be generalised and replicated. RESULTS: Findings demonstrated that the service standards were met and exceeded expectations. Families valued the role, which enabled choice in location of care and perceived the service as a 'lifeline'. DISCUSSION: Team composition with the right level of specialist and advanced nursing skills, anticipating symptom-management planning, clinical supervision and funded on-call processes were key success criteria. The nursing logic model demonstrated relationships between context investments into the service and outcomes for children and families.

Relationships between drug company representatives and medical students: medical school policies and attitudes of student affairs deans and third-year medical students.

OBJECTIVES: The authors sought to ascertain the details of medical school policies about relationships between drug companies and medical students as well as student affairs deans' attitudes about these interactions. METHODS: In 2005, the authors surveyed deans and student affairs deans at all U.S. medical schools and asked whether their schools had a policy about relationships between drug companies and medical students. They asked deans at schools with policies to summarize them, queried student affairs deans regarding their attitudes about gifts, and compared their attitudes with those of students who were studied previously. RESULTS: Independently of each other, 114 out of 126 deans (90.5%) and 114 out of 126 student affairs deans (90.5%) responded (identical numbers are not misprints). Ten schools had a policy regarding relationships between medical students and drug company representatives. Student affairs deans were much more likely than students to perceive that gifts were inappropriate. CONCLUSION: These 2005 policies show trends meriting review by current medical schools in considering how to comply with the 2008 Association of American Medical Colleges recommendations about relationships between drug companies and medical students or physicians.

Relationship of family environment and parental psychiatric diagnosis to impairment in ADHD.

OBJECTIVE: Family environmental factors as well as parental attention-deficit/hyperactivity disorder (ADHD) status have shown associations with variability in ADHD. The purpose of the present study was to examine the links among family environment, parental psychiatric diagnosis, and child impairment within a sample of ADHD-affected sibling pairs (ASPs) ages 5 to 18 years. METHOD: Parents in 220 ASP families completed a measure of family functioning, the Family Environment Scale. Children's impairment was measured by clinical ratings of global functioning and by maternal ratings of behavior. RESULTS: Parents of children with ADHD rate their families as higher in conflict and lower in achievement and organization than normative samples. High family conflict is significantly associated with impairment in ADHD ASPs accounting for approximately 40% of the sibling similarity in impairment. Parental psychiatric diagnosis revealed no significant direct link to sibling impairment, but rather a significant indirect link to impairment mediated by family conflict. Direct associations with parental diagnosis depend on birth order of the ASP members despite the comparable mean impairment scores for older and younger ADHD siblings. CONCLUSIONS: There are strong links between impairment in children with ADHD and family environment. Different processes and mechanisms may contribute to impairment in different children in the same family.

Psychiatric comorbidity in adult attention deficit hyperactivity disorder: findings from multiplex families.

OBJECTIVE: Patterns of psychiatric comorbidity were assessed in adults with and without attention deficit hyperactivity disorder (ADHD) identified through a genetic study of families containing multiple children with ADHD. METHOD: Lifetime ADHD and comorbid psychopathology were assessed in 435 parents of children with ADHD. Rates and mean ages at onset of comorbid psychopathology were compared in parents with lifetime ADHD, parents with persistent ADHD, and those without ADHD. Age-adjusted rates of comorbidity were compared with Kaplan-Meier survival curves. Logistic regression was used to assess additional risk factors for conditions more frequent in ADHD subjects. RESULTS: The parents with ADHD were significantly more likely to be unskilled workers and less likely to have a college degree. ADHD subjects had more lifetime psychopathology; 87% had at least one and 56% had at least two other psychiatric disorders, compared with 64% and 27%, respectively, in non-ADHD subjects. ADHD was associated with greater disruptive behavior, substance use, and mood and anxiety disorders and with earlier onset of major depression, dysthymia, oppositional defiant disorder, and conduct disorder. Group differences based on Kaplan-Meier age-corrected risks were consistent with those for raw frequency distributions. Male sex added risk for disruptive behavior disorders. Female sex and oppositional defiant disorder contributed to risk for depression and anxiety. ADHD was not a significant risk factor for substance use disorders when male sex, disruptive behavior disorders, and socioeconomic status were controlled. CONCLUSIONS: Adult ADHD is associated with significant lifetime psychiatric comorbidity that is not explained by clinical referral bias.

Temperament and character profiles and the dopamine D4 receptor gene in ADHD.

OBJECTIVE: This study was designed to investigate the link among attention deficit hyperactivity disorder (ADHD) in adults, novelty-seeking temperament, and the 48-base pair (bp) dopamine D4 receptor (DRD4) gene variant. METHOD: This study drew from a larger molecular genetic study of ADHD in which the ascertainment criterion was having an affected sibling pair with ADHD. Parents (N=171) from 96 families provided data. Of the 171 parents, 56 (33%) had a lifetime history of ADHD, with 28 (50%) continuing to meet DSM-IV criteria (i.e., "persistent" ADHD). Latent variable modeling was used to test whether the DRD4 gene variant or Temperament and Character Inventory factors could predict ADHD. RESULTS: Using latent variable modeling, the authors were able to confirm the first-order factor structure of the Temperament and Character Inventory. Furthermore, novelty seeking predicted ADHD lifetime diagnosis (R(2)=26%), while the DRD4 gene variant independently predicted ADHD (R(2)=5%) but not novelty seeking. CONCLUSIONS: In this unique sample of parents from multiply affected ADHD families, novelty seeking and the 48-bp DRD4 variant were associated with a lifetime history of ADHD. However, the association between novelty seeking and ADHD does not appear to be due to variation in the 48-bp DRD4 variant.

Treatment of pediatric anxiety disorders: an open-label extension of the research units on pediatric psychopharmacology anxiety study.

BACKGROUND: An 8-week placebo-controlled study, the Research Units on Pediatric Psychopharmacology Anxiety Study, documented beneficial effects of fluvoxamine in the treatment of pediatric social anxiety, separation anxiety, or generalized anxiety disorders. Following completion of this study, participants were invited to enter a 6-month open-label treatment phase designed to examine three issues: (a) long-term maintenance of response in fluvoxamine responders, (b) acute response to fluoxetine in fluvoxamine nonresponders, and (c) acute response to fluvoxamine in placebo nonresponders. METHODS: Participants aged 6-17 years meeting criteria for social anxiety, separation anxiety, or generalized anxiety disorders previously treated in an 8-week placebo-controlled trial (n = 128) were offered open treatment. Changes in symptoms of anxiety during open treatment were assessed in three groups: (a) fluvoxamine responders maintained on fluvoxamine, (b) fluvoxamine nonresponders changed to fluoxetine, and (c) placebo nonresponders changed to fluvoxamine. Response was defined based on Clinical Global Impression criteria. RESULTS: During 6 months of continued open treatment, anxiety symptoms remained low in 33 of 35 (94%) subjects who initially responded to fluvoxamine. Among 14 fluvoxamine nonresponders switched to fluoxetine, anxiety symptoms appeared significantly improved in 10 (71%) subjects. Finally, among 48 placebo nonresponders, 27 (56%) showed clinically significant improvement in anxiety on fluvoxamine. CONCLUSION: The current findings concerning extended treatment of pediatric anxiety disorders are only preliminary, because treatment was uncontrolled. Results suggest that an initial fluvoxamine response is likely to be retained with continued treatment, that some fluvoxamine nonresponders may respond to fluoxetine, and that some placebo nonresponders may respond to fluvoxamine.

Innovative approach to providing 24/7 palliative care for children.

This study outlines an innovative, English hospice-based service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice in place of care and of death; and collaboration to develop shared pathways and management plans. Service standards were audited through questionnaires completed by professionals and families. Findings demonstrated that the nursing team filled a critical gap and met its pre-set standards. Keys to success were: having the right level and mix of specialist and advanced skills; funded on-call arrangements; anticipatory planning; symptom management plans; and clinical supervision. Further recommendations were to develop a multi-agency workforce strategy, and to increase capacity in the children's sector to undertake academic research measuring the impacts of interventions.