Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease.

Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures a comprehensive approach to the infant's physical, emotional, spiritual, and psychosocial well-being and offers enhanced support for parents and families while providing an interprofessional approach to care. Pediatric cardiac provider attitudes, knowledge, patterns of prenatal palliative care, and consultation for fetuses with complex heart disease to guide increased and appropriate prenatal consultation were explored for a quality improvement project completed at a single institution. A retrospective cardiac database review identified that 21.5% of maternal patients seen prenatally and carrying a fetus with complex CHD would have qualified for prenatal palliative care consultation. To increase prenatal palliative care consultation, a pathway for referral was developed. A pre-evaluation of pediatric cardiac provider attitudes regarding palliative care was measured. Survey data informed the intervention phase of prenatal palliative care educational material development, which was presented to pediatric cardiac providers. The number of prenatal palliative care consults was tracked. A postintervention survey completed by pediatric cardiac providers showed increased understanding and utilization of palliative care for comfort and support and not just reserved for death preparation. Greater than 93% agreed or strongly agreed that they gained a better understanding of appropriate use of palliative/supportive care. As pediatric cardiac providers become more knowledgeable about early integration of palliative care, parents and infants will benefit greatly from referrals and initiation of palliative care at the time of prenatal diagnosis.

Increasing Health Literacy Among Residents at a Juvenile Temporary Detention Center.

INTRODUCTION: Health literacy is a nationwide public health concern. Low health literacy in adolescents is related to increased adolescent high-risk behaviors, which can negatively affect their overall health. METHOD: A quality improvement health literacy project was developed, implemented, and evaluated in a juvenile temporary detention center. Stakeholders identified pertinent health-related topics for discussion, including female body anatomy, sexual health, consent, pornography, sex trafficking, smoking, and anger management. Toolkits and pretest/posttest questionnaires guided weekly group sessions. Youth engaged in content during each session. RESULTS: Group health literacy scores were examined to evaluate the program. Group comments were debriefed by facilitators after each session; 119 youth residents participated. Positive increases in health literacy and health knowledge were observed in all sessions for all groups. DISCUSSION: Interactive health education programs for incarcerated youth can improve their health literacy and health knowledge and begin a path to decrease health inequities in this vulnerable population.

Improving Referrals to Preschool Special Education in Pediatric Primary Care.

INTRODUCTION: The American Academy of Pediatrics created evidence-based guidelines that encourage early identification and referral for children with developmental delays. Although pediatric primary care providers are poised to link 3-to-5-year-old children to school-based services, there are gaps in making referrals. METHOD: Educational dissemination of streamlined referral packets was introduced. Knowledge and perceived confidence were measured following an educational presentation. Retrospective chart reviews compared referral rates to preschool special education services when developmental delays were identified. RESULTS: Mean pretest to posttest knowledge and perceived confidence to refer children to preschool special education increased following education. Referral rates for 3-5 years-old by pediatric primary care providers doubled during the initial 8-week implementation period and remained constant 9 months later. DISCUSSION: Educational dissemination of a streamlined referral process in pediatric primary care is a sustainable approach that ensures preschool-aged children with developmental delays receive timely referrals for further school-based evaluations and interventions.

Effects of Early Initiation of Breastfeeding on Exclusive Breastfeeding Practices of Mothers in Rural Haiti.

INTRODUCTION: Rates and relationships of early initiation of breastfeeding (EIBF) and exclusive breastfeeding (EBF) of mothers in rural Haiti were examined. Prelacteal and complementary feedings were identified. METHODS: With a cross-sectional descriptive design, survey data from mothers (N = 195) were collected at three intervals after birth. Data were analyzed for indicators of EIBF, EBF, and complementary feedings. RESULTS: Overall, 148 (75.9%) mothers reported EIBF, and 75 (38.5%) reported EBF. EIBF was associated with EBF, with an adjusted relative risk 1.35 (95% confidence interval = [0.84, 2.18]). Several nutritive and nonnutritive substances interrupted EBF during the first 6 months of life. DISCUSSION: Haiti has an under-five mortality rate of 67.0/1,000 live births, exceeding the mean of 46.5/1,000 live births for developing regions. Both EIBF and EBF are associated with decreased neonatal and early infant mortality. Country-specific data are needed to inform and develop breastfeeding initiatives and community-level campaigns to improve the prevalence of EIBF and EBF in Haiti.

Effectiveness of a campaign to implement chlorhexidine use for newborns in rural Haiti.

BACKGROUND: Chlorhexidine topical cord application is recommended to prevent umbilical cord infections in newborns delivered at home in low-resource settings. A community campaign introducing chlorhexidine for the first time in Haiti was developed. Traditional birth attendants (TBAs) were identified as implementers since they typically cut newborns' cords. TBAs were trained to apply chlorhexidine to the cord and demonstrate this procedure to the mother. Concurrently TBAs explained reasons for using chlorhexidine exclusively instead of traditional cord care practices. The campaign's effectiveness was evaluated 7-10 days post-delivery using a survey administered by community health workers (CHWs) to 198 mothers. RESULTS: Nearly all mothers heard about chlorhexidine use and applied it as instructed. Most mothers did not initially report using traditional cord care practices. With further probing, the majority reported covering the cord but few applied an unhygienic substance. No serious cord infections were reported. CONCLUSION: The campaign was highly successful in reaching mothers and achieving chlorhexidine use. In this study, the concomitant use of traditional cloth coverings or bindings of the cord did not appear harmful; however more research is needed in this area. This campaign provides a model for implementing chlorhexidine use, especially where trained TBAs and CHWs are present.

Implementation of a Pathway for the Treatment of Fever and Neutropenia in Pediatric Patients With Cancer.

Fever and neutropenia is an oncologic emergency. Time-to-antibiotics (TTA) refers to the amount of time from initial provider evaluation for fever and neutropenia to intravenous antibiotic administration. Research supports that rapid time-to-antibiotics (RTTA) is associated with improved patient outcomes. This quality improvement project evaluated the success of implementing an RTTA pathway in pediatric oncology patients with fever and neutropenia. The setting was an advanced practice nurse-managed pediatric ambulatory infusion center where patients with fever and neutropenia were often evaluated and treated. In order to improve TTA, a multidisciplinary pathway was implemented with a goal of TTA that was less than 60 minutes from initial provider evaluation. Implementation of the RTTA pathway included discussion of shared expectations with the pharmacy and education departments and discussion of shared expectations with the bedside nurses and advanced practice nurses staffing the unit. Additionally, a preliminary lab test was utilized. Success of the implementation was evaluated through 2 measures: TTA and nurses' knowledge of fever and neutropenia and the importance of RTTA. The aims of this project were to improve TTA as well as nurses' knowledge of fever and neutropenia and the importance of RTTA, and both these aims were successfully attained.

Non-invasive ventilation and gastrostomy may not impact overall quality of life in patients with ALS.

Non-invasive positive pressure ventilation (NIPPV) may improve health-related quality of life (HRQoL) in patients with ALS. The effect of percutaneous endoscopic gastrostomy (PEG) on HRQoL is not known. Instruments measuring QoL more broadly have not been used to assess effects of these interventions. This study was undertaken to do so via the ALS-Specific Quality of Life Instrument-revised (ALSSQOL-R). A retrospective review was carried out of ALS patients who had undergone one QoL assessment prior to NIPPV or PEG initiation and two assessments following one of these interventions. Random coefficients models were developed. Twenty-two patients met criteria for inclusion: six NIPPV, 11 PEG, and five NIPPV + PEG. The ALSSQoL-R did not change significantly following NIPPV or PEG or both. Function declined in all three groups over the same time-period. In conclusion, overall QoL in ALS does not appear to change after NIPPV or PEG. This may reflect the impact of non-health-related factors or may be due to a response shift. QoL instruments that include domains outside of health status may not be sensitive to changes from single interventions. Larger, prospective studies are needed.

Psychological health in patients with ALS is maintained as physical function declines.

Although quality of life (QoL) in patients with ALS has been shown to be independent of physical function and to be maintained over time, the status of psychological health over the disease course has not been studied using an ALS-specific instrument. It is also uncertain how three common interventions - antidepressants, percutaneous endoscopic gastrostomy (PEG), and non-invasive ventilatory support (NIPPV) - influence psychological health. We performed a retrospective review of the Negative Emotion subscale (NES) score, a measure of psychological health within the ALS-Specific QoL Instrument. Analysis of 72 patients over three months, and of a subset of 48 over six months, showed stability of psychological health despite a decline in the ALS Functional Rating Scale-Revised to 88.4% of baseline at three months and 82.6% at six months. NES did not change after antidepressants, PEG, or NIPPV, although there was a suggestion of improvement with antidepressants in a subgroup. In conclusion, as with overall QoL, psychological health of ALS patients as measured with an ALS-specific instrument does not decline as physical function is lost. Supports found in a multidisciplinary ALS clinic may influence expectations, facilitate response shift, and stabilize psychological health while masking the independent effects of specific interventions.

Psychological morbidity in ALS: the importance of psychological assessment beyond depression alone.

The assessment of psychological morbidity in patients with ALS has centered around depression, hopelessness, and anxiety. The Brief Symptom Inventory (BSI) offers an opportunity to explore psychological morbidity more broadly. We administered this instrument to 111 patients with ALS as part of a larger study of quality of life. Scores of ALS patients on the Global Severity Index and Positive Symptom Distress Index were comparable to the majority of distressed psychiatric outpatients and significantly higher than those of non-patient adults. Among BSI subscales, scores on the Anxiety, Depression, Phobic Anxiety, and Somatization subscales also were not significantly different from distressed adult psychiatric outpatients, and were greater than normal mean scores for a non-patient population sample. Based on these data, ALS patients appear to be significantly more distressed than non-patients in the identified areas, and as distressed as approximately 68% of a distressed psychiatric outpatient sample. In conclusion, a substantial number of individuals with ALS experience psychological distress of various types. Because psychological health impacts lifespan and quality of life in these individuals, broadly-based mental health assessment and treatment should remain an important part of care for patients with ALS. The effects of physical symptoms on responses to questions used to assess psychological distress must be considered.

The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations.

The Schedule for the Evaluation of the Individual Quality of Life-Direct Weighting (SEIQoL-DW) has been used to measure quality of life (QoL) in small cohorts of individuals with ALS, but its suitability for assessing aggregate QoL for between-group comparisons is uncertain. We undertook a prospective study in which 120 patients with ALS completed two measures of QoL, the SEIQoL-DW and the McGill Quality of Life Single-Item Scale (MQoL-SIS). There was a weak correlation between the SEIQoL-DW index score and the MQoL-SIS. Only three of five cues accounted for a significant amount of variance in the MQoL-SIS, and even those accounted for only 12.8%-13.9% of the variance. Cues relating to family or significant other were chosen by over 90% of patients, and were the most heavily weighted. This study demonstrates that the SEIQoL-DW is of great value in identifying those factors which contribute to the psychosocial well-being of an individual with ALS. However, SEIQoL index scores may not reflect aggregate QoL of groups of patients with ALS, and may be measuring a construct other than QoL. Caution should be exercised in using the SEIQoL index score to measure QoL of groups, such as would be needed in interventional trials.

Problem solving skills predict quality of life and psychological morbidity in ALS caregivers.

Amyotrophic lateral sclerosis (ALS) often is associated with a particularly intensive caregiving experience, and the well-being of caregivers impacts that of patients. Thus, identification of factors leading to distress in caregivers may provide avenues for intervention that will help both the caregiver and the patient. We prospectively examined caregivers' social problem solving skills, the quality of the patient-caregiver relationship, caregivers' spirituality and religiousness, and the ways in which these impact caregivers' quality of life (QoL) and psychological morbidity in 75 caregivers of ALS patients. Data were analyzed through correlational and hierarchical multiple regression analyses. Social problem solving and spirituality were the best predictors of caregivers' QoL, accounting for 15.6% and 7.8% of the variance in QoL, respectively (F (2, 69) = 11.83, p<.001). Social problem solving also predicted and accounted for 25.4% of the variance in psychological morbidity (F (1, 71) = 25.571, p<.001). Level of care provided did not predict either QoL or psychological morbidity in caregivers. In conclusion, the problem-solving skills of ALS caregivers are an important determinant of caregiver well-being. Developing interventions to teach ALS caregivers effective methods of problem solving would probably be beneficial to this population.

Survival of patients with primary pedal melanoma.

Malignant melanoma is increasing at a rate faster than any other cancer in the United States. Location of the primary tumor on the foot is associated with poorer prognosis. This study evaluates a cohort of 148 patients with melanoma of the lower extremity (37 foot or ankle and 111 leg, knee, or thigh) diagnosed at a university medical center during a 32-year period. The mean follow-up for the foot/ankle patients was 44 months. The overall 5-year survival rate was 52% for patients with a primary melanoma of the foot/ankle compared with 84% for patients with a primary melanoma elsewhere on the lower extremity. Although the study period extended over 32 years, nearly 65% of the foot/ankle patients were diagnosed in the last decade. This increase is most likely because of the documented increase in incidence of melanoma in the United States and an increasing referral pattern at our institution.

Religiousness is related to quality of life in patients with ALS.

The authors studied quality of life (QOL) and religiousness in 49 patients with ALS over five consecutive visits spanning approximately 1 year. QOL was not significantly correlated with religiousness at entry. Over time, a significant relationship developed between QOL and total, public, and private religiousness.

Depression and chronic diabetic foot disability. A case report of suicide.

Evidence at the scene of death and the postmortem examination led the pathologist to conclude suicide by intentional insulin overdose. The examination was conducted one day after the patient's death. The amount of insulin injected is not known, but levels of insulin in the vitreous gel were extremely high. While glucose and insulin are more stable in vitreous than in postmortem blood, the longer the delay between death and sample collection, the greater the uncertainty of the exact concentrations of substances at the time of death [42]. Patients with diabetes may have at their disposal the resources to end their lives; misuse of insulin and suicide by insulin overdose are presumably underreported events. Not only do diabetics have insulin available, but they may also have narcotics, tricyclic antidepressants or other drugs that are toxic at high doses. Even in the absence of depression, all patients with diabetes face multiple emotional issues related to the diagnosis and course of the disease. Diabetes often requires significant lifestyle changes, such as diet and physical activity, upon its diagnosis. Patients face the possibility of long-term, possibly debilitating, complications: vision loss, sexual dysfunction, and amputation. Any podiatrist who treats a large number of diabetic patients will encounter the situation of a patient at risk of losing a limb. A patient may consciously or unconsciously view amputation as punishment; limb loss interferes physically with bodily function and has extensive emotional consequences as well. It is important for patients to be involved with a healthcare team (including primary care physician, nurse educator, ophthalmologist, and podiatrist) that provides support throughout their lives [3]. As learned early on in podiatry school, podiatric physicians don't treat feet; they treat patients who have foot problems. It is as important to know when to refer a patient to the primary care physician or a psychiatrist for mental health complaints as it is to know when to refer a patient to an orthopedic surgeon for hip pain or to an ophthalmologist for vision problems. We do not propose that this patient's diabetic foot disease was the direct cause of his depression and suicide; however, the prevalence of depression in the general population and its even higher rates in patients with chronic medical illness require awareness of these problems by all members of the medical profession.