Motivating adherence among adolescents with cystic fibrosis: youth and parent perspectives.

As advances in the care of individuals with cystic fibrosis (CF) have resulted in improved survival, therapeutic regimens for treatment of CF have become increasingly complex. This high treatment burden poses challenges to chronic disease self-management, particularly amongst adolescents. The aim of this qualitative study was to understand the barriers and facilitators of adherence to chronic CF therapies as perceived by adolescents with CF and their parents. In a series of structured interviews with 18 youth and their parents, we explored issues related to daily routines, youth and parental roles regarding chronic therapy, and motivators for adherence. All interviews were audio-recorded and coded for themes and patterns. Reported barriers to adherence included time pressures, competing priorities, heightened awareness of disease trajectory, privacy concerns, and lack of perceived consequences from non-adherence. Identified facilitators for adherence included recognizing the importance of therapies, developing strong relationships with care teams, establishing structured routines, and focusing on shifting responsibilities from a parent to their adolescent child. The themes uncovered by these interviews identify areas for intervention and support by clinical programs seeking to improve adherence and self-management strategies for adolescents with CF.

Impact of a contemplative end-of-life training program: being with dying.

OBJECTIVE: Health care professionals report a lack of skills in the psychosocial and spiritual aspects of caring for dying people and high levels of moral distress, grief, and burnout. To address these concerns, the "Being with Dying: Professional Training Program in Contemplative End-of-Life Care" (BWD) was created. The premise of BWD, which is based on the development of mindfulness and receptive attention through contemplative practice, is that cultivating stability of mind and emotions enables clinicians to respond to others and themselves with compassion. This article describes the impact of BWD on the participants. METHODS: Ninety-five BWD participants completed an anonymous online survey; 40 completed a confidential open-ended telephone interview. RESULTS: Four main themes-the power of presence, cultivating balanced compassion, recognizing grief, and the importance of self-care-emerged in the interviews and were supported in the survey data. The interviewees considered BWD's contemplative and reflective practices meaningful, useful, and valuable and reported that BWD provided skills, attitudes, behaviors, and tools to change how they worked with the dying and bereaved. SIGNIFICANCE OF RESULTS: The quality of presence has the potential to transform the care of dying people and the caregivers themselves. Cultivating this quality within themselves and others allows clinicians to explore alternatives to exclusively intellectual, procedural, and task-oriented approaches when caring for dying people. BWD provides a rare opportunity to engage in practices and methods that cultivate the stability of mind and emotions that may facilitate compassionate care of dying patients, families, and caregivers.

The interface of Medicare coverage decision-making and emerging molecular-based laboratory testing.

The process of obtaining Medicare coverage for clinical services (both at the national and local levels) can be complex and often leads to considerable confusion among external stakeholders. The entry of molecular diagnostic testing into the clinical arena of laboratory medicine has posed some special challenges, both for those providing the testing, and those paying for such technology. This commentary will seek to clarify Medicare's pursuit of defining medical necessity by describing both the local and national Medicare coverage policy processes. However, it should be understood that the Medicare reimbursement for such esoteric testing is a work-in-progress, without an established step-by-step process for obtaining a positive coverage decision. Yet, this evolving process provides all stakeholders (payers, laboratories, industry, clinicians, etc.) with an opportunity to fully understand the health policy implications of complex molecular diagnostic testing. In addition, brief case study vignettes are incorporated into our discussion, to show how laboratorians, in conjunction with their clinical colleagues, can effectively engage the payer community in developing more medically sound and fiscally responsible coverage policies.

Factors influencing the participation of gastroenterologists and hepatologists in clinical research.

BACKGROUND: Although clinical research is integral to the advancement of medical knowledge, physicians face a variety of obstacles to their participation as investigators in clinical trials. We examined factors that influence the participation of gastroenterologists and hepatologists in clinical research. METHODS: We surveyed 1050 members of the American Association for the Study of Liver Diseases regarding their participation in clinical research. We compared the survey responses by specialty and level of clinical trial experience. RESULTS: A majority of the respondents (71.6%) reported involvement in research activities. Factors most influential in clinical trial participation included funding and compensation (88.3%) and intellectual pursuit (87.8%). Barriers to participation were similar between gastroenterologists (n = 160) and hepatologists (n = 189) and between highly experienced (n = 62) and less experienced (n = 159) clinical researchers. These barriers included uncompensated research costs and lack of specialized support. Industry marketing was a greater influence among respondents with less trial experience, compared to those with extensive experience (15.7% vs 1.6%; P < .01). Hepatologists and respondents with extensive clinical trial experience tended to be more interested in phase 1 and 2 studies, whereas gastroenterologists and less experienced investigators were more interested in phase 4 studies. CONCLUSION: This study suggests that the greatest barrier to participation in clinical research is lack of adequate resources. Respondents also favored industry-sponsored research with less complex trial protocols and studies of relatively short duration.

The CLABs collaborative: a regionwide effort to improve the quality of care in hospitals.

BACKGROUND: Each year, nearly 250,000 cases of central line-associated bloodstream infections (CLABs) occur in hospitals in the United States. In 2005, the Greater New York Hospital Association and the United Hospital Fund launched a collaborative initiative to eliminate CLABs in hospital intensive care units (ICUs). COLLABORATIVE DESIGN: Hospital leadership at 36 hospitals committed to support their staffs' participation in specific activities, including three learning sessions. An infectious disease physician consultant served as an on-call consultant to provide the necessary clinical guidance, real-time feedback, and support. Most hospitals' interdisciplinary CLABs teams met weekly to implement evidence-based practices known collectively as the central line bundle, determine areas for additional focus, and to reassess strategies using the Plan-Do-Study-Act (PDSA) model. RESULTS: There was a statistically significant decrease of 54% (p < .001) between the mean CLABs rate during the intervention period (2.24 infections per 1,000 central line days) compared with the mean baseline rate (4.85 infections per 1,000 central line days). By March 2008, the rate had dropped by 70% (1.44 infections per 1,000 central line days) compared with baseline. At the hospital level, decreases in CLABs rates up to 88% were observed between the baseline period and the intervention period, with 56% of hospitals achieving at least a 50% decrease in their CLABs rate. The hospitals beginning above the national rate decreased their CLABs rates by almost twice as much as hospitals that began below the national average. SUMMARY AND CONCLUSIONS: Each participating hospital sustained implementation of the central line bundle throughout the 33-month intervention, which, along with standardized line maintenance procedures, resulted in reduction in, and sometimes elimination of, CLABs.

New and lingering controversies in pediatric end-of-life care.

OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. METHODS: Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. RESULTS: A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. CONCLUSIONS: There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.

Continuity of care and caring: what matters to parents of children with life-threatening conditions.

This article presents parents' perceptions regarding continuity and coordination of care of children with life-threatening conditions as revealed through qualitative analysis of interviews with 36 bereaved parents of children who died after receiving care at three geographically dispersed teaching hospitals in the United States. Parental concerns about and experience of continuity of care were framed primarily in terms of the quality and continuity of relationships with healthcare providers throughout a child's illness and death and the continuity and consistency of information that they received about their child's condition and care. Continuity in relationships was perceived as key in ensuring that clinicians knew and cared about the child and parents, which in turn contributed to parents' confidence that their child would receive the best possible care. In the absence of continuous, caring relationships with staff, parents reported frustration, hypervigilance, and mistrust about the quality of care that their child received.

Complete trisomy 1q with mosaic Y;1 translocation: a recurrent aneuploidy presenting diagnostic dilemmas.

We present a case of a liveborn male with complete trisomy 1q in mosaic form due to a de novo unbalanced translocation. There are seven previously documented cases of complete trisomy for 1q, which demonstrate that this is a lethal condition. All cases have similar phenotype including weights greater than 50th centile for gestational age, hydrocephalus, microphthalmia, abnormal ears, small mouth or jaw, and abnormal fingers. Single umbilical artery, imperforate anus, and dysplastic kidneys are also seen in more than one patient. Five of the eight translocation cases have identical chromosomal breakpoints involving 1q and Yq. This suggests the possibility of sequence similarities on these two chromosomes as has been documented with several other recurrent chromosomal rearrangements. Further, this case demonstrates the need for postnatal genetics evaluation following prenatal diagnosis. In postnatal testing, the aneuploidy could not be demonstrated in metaphase cells from cultured lymphocytes. More detailed testing prompted by abnormal amniocentesis and neonatal dysmorphology was necessary to confirm the cytogenetic diagnosis. Without the prenatal diagnosis, it is likely that the true cytogenetic aberration would have gone undetected.

Validity of self-reported dietary intake at school meals by American Indian children: the Pathways Study.

OBJECTIVE: To examine the validity of a modified diet record-assisted 24-hour recall in third-grade (8 to 10 years old) American Indian children. DESIGN: The children were trained to record their food intake using diet records, and then they recalled their 24-hour food intakes, using the diet records as memory prompts, during interviews by trained staff using the Minnesota Nutrition Data System (NDS; version 2.6, 1993, Food database version 8A, Nutrient database version 23; Nutrition Coordinating Center, University of Minnesota, Minneapolis). The modified method added training in portion size estimation. Direct observation of the children's intakes during school meals was used to validate the accuracy of their self-reported recalls. SUBJECTS: Eighty third-grade children recruited from schools from four of the American Indian Nations participating in the Pathways Study. Statistical analyses performed Pearson correlations were used for nutrient level data. A mixed regression model (PROC MIXED), with no other fixed effects and site as a random effect, was used to test the null hypothesis that the difference between recalled and observed intakes was zero (H(o): beta(o)=0). Food intake data were obtained from the Nutrition Data System Record Reports. RESULTS: There were no significant differences between recalled and observed energy intakes for the school meals combined or for either meal individually. Percentages of energy intake from fat, protein, and carbohydrate from recalls were not significantly different from those observed for the combined school meals. Pearson correlations for energy and energy-providing nutrients ranged from 0.52 to 0.86 for both meals, from 0.55 to 0.86 for school lunch, and from 0.61 to 0.86 for school breakfast. Agreement between recalled and observed food items was 75%. Children recalled 57% of food quantities within +/-10% of observed quantities. CONCLUSIONS: At the group level, American Indian children were able to accurately report the macronutrient proportions of their total energy intake, and their reporting of total energy intake (+13% of criterion) compares favorably with that of other ethnic groups of children of similar age. They were able to accurately recall the majority of foods that they were independently observed consuming during school meals.