The risk of venous thromboembolism in atopic dermatitis: a matched cohort analysis in UK primary care.

BACKGROUND: Atopic dermatitis (AD) is a common chronic inflammatory skin condition. While other chronic inflammatory conditions are associated with increased risk of venous thromboembolism (VTE), associations between AD and VTE have not been established. OBJECTIVES: We examined whether AD is associated with an increased risk of VTE in a population-based study. METHODS: Electronic health records were extracted from UK general practices contributing to the Optimum Patient Care Research Database (1 January 2010 to 1 January 2020). All adults with AD were identified (n = 150 975) and age- and sex-matched with unaffected controls (n = 603 770). The risk of VTE, consisting of pulmonary embolism (PE) or deep-vein thrombosis (DVT), was compared in people with AD vs. controls using Cox proportional hazard models. PE and DVT were examined separately as secondary outcomes. RESULTS: We identified 150 975 adults with active AD and matched them with 603 770 unaffected controls. During the study, 2576 of those with active AD and 7563 of the matched controls developed VTE. Individuals with AD had a higher risk of VTE than controls [adjusted hazard ratio (aHR) 1.17, 95% confidence interval (CI) 1.12-1.22]. When assessing VTE components, AD was associated with a higher risk of DVT (aHR 1.30, 95% CI 1.23-1.37) but not PE (aHR 0.94, 95% CI 0.87-1.02). The VTE risk was greater in older people with AD (≥ 65 years: aHR 1.22, 95% CI 1.15-1.29; 45-65 years: aHR 1.15, 95% CI 1.05-1.26; < 45 years: aHR 1.07, 95% CI 0.97-1.19) and those with obesity [body mass index (BMI) ≥ 30: aHR 1.25, 95% CI 1.12-1.39; BMI < 30: aHR 1.08, 95% CI 1.01-1.15). Risk was broadly consistent across mild, moderate or severe AD. CONCLUSIONS: AD is associated with a small increase in risk of VTE and DVT, with no increase in risk of PE. The magnitude of this risk increase is modest in younger people, and those without obesity.

Data-Resource Profile: United Kingdom Optimum Patient Care Research Database.

Introduction: Electronic medical records (EMRs) maintained in primary care in the UK and collected and stored in EMR databases offer a world-leading resource for observational clinical research. We aimed to profile one such database: the Optimum Patient Care Research Database (OPCRD). Methods and Participants: The OPCRD, incepted in 2010, is a growing primary care EMR database collecting data from 992 general practices within the UK. It covers over 16.6 million patients across all four countries within the UK, and is broadly representative of the UK population in terms of age, sex, ethnicity and socio-economic status. Patients have a mean duration of 11.7 years' follow-up (SD 17.50), with a majority having key summary data from birth to last data entry. Data for the OPCRD are collected incrementally monthly and extracted from all of the major clinical software systems used within the UK and across all four coding systems (Read version 2, Read CTV3, SNOMED DM+D and SNOMED CT codes). Via quality-improvement programmes provided to GP surgeries, the OPCRD also includes patient-reported outcomes from a range of disease-specific validated questionnaires, with over 66,000 patient responses on asthma, COPD, and COVID-19. Further, bespoke data collection is possible by working with GPs to collect new research via patient-reported questionnaires. Findings to Date: The OPCRD has contributed to over 96 peer-reviewed research publications since its inception encompassing a broad range of medical conditions, including COVID-19. Conclusion: The OPCRD represents a unique resource with great potential to support epidemiological research, from retrospective observational studies through to embedded cluster-randomised trials. Advantages of the OPCRD over other EMR databases are its large size, UK-wide geographical coverage, the availability of up-to-date patient data from all major GP software systems, and the unique collection of patient-reported information on respiratory health.

Information seeking behaviors of parents whose children have life-threatening illnesses.

OBJECTIVES: For children with life-threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e-health literacy of Internet-users. STUDY DESIGN: Cross-sectional, telephone survey of 129 parents whose children are in a pediatric palliative care program in Florida. RESULTS: Four out of five parents report that they use the Internet, and 64% of Internet-users use it daily. Parents who never use the Internet, versus parents who do use the Internet, are predominately Hispanic (50%) and have less than a high school education (64%) (P ≤ 0.023). Internet-users have high levels of e-health literacy; however, they are not confident or are unsure about the quality of information on the Internet. Not having graduated from high school was associated with a decrease in e-health literacy and using the Internet as the primary information source (vs. doctor as primary source) was associated with an increase in e-health literacy. CONCLUSION: Parents of children with life-threatening illnesses have access to and use the Internet as a source of information about their children's health. More information is needed to explore how electronic-based interventions could be used to impact information seeking of parents whose children are in pediatric palliative care programs.

Pediatric nurses' attitudes toward hospice and pediatric palliative care.

Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.

A convergent molecular network underlying autism and congenital heart disease.

Patients with neurodevelopmental disorders, including autism, have an elevated incidence of congenital heart disease, but the extent to which these conditions share molecular mechanisms remains unknown. Here, we use network genetics to identify a convergent molecular network underlying autism and congenital heart disease. This network is impacted by damaging genetic variants from both disorders in multiple independent cohorts of patients, pinpointing 101 genes with shared genetic risk. Network analysis also implicates risk genes for each disorder separately, including 27 previously unidentified genes for autism and 46 for congenital heart disease. For 7 genes with shared risk, we create engineered disruptions in Xenopus tropicalis, confirming both heart and brain developmental abnormalities. The network includes a family of ion channels, such as the sodium transporter SCN2A, linking these functions to early heart and brain development. This study provides a road map for identifying risk genes and pathways involved in co-morbid conditions.

Assessing non-response bias in pediatric palliative care research.

National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida's publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which 'non-response' can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.

Factors affecting decisional conflict for parents with children enrolled in a paediatric palliative care programme.

UNLABELLED: Palliative care programmes have the potential to affect several health outcomes for children and families, including reducing decisional conflict. METHOD: A telephone survey was conducted with 140 parents of children with life-limiting illnesses enrolled in Florida's publicly funded paediatric palliative care programme (Partners in Care: Together for Kids). RESULTS: Multivariate results suggest that parents with less than a high school education had decisional conflict scores (DCS) that were 13 points higher (p<0.05) than parents with some college education. In addition, parents who indicated that they had recently made a decision for their children had DCS scores that were 7 points higher (p<0.05) than parents who indicated they had not. DISCUSSION: Our findings suggest that paediatric palliative care programmes should treat parents with lower educational levels as being particularly vulnerable and should consider allocating additional resources to them when a decision for their children is imminent.

Drug combinations as effective anti-leishmanials against drug resistant Leishmania mexicana.

Leishmania is a parasite that causes the disease leishmaniasis, and 700 000 to 1 million new cases occur each year. There are few drugs that treat the disease and drug resistance in the parasite limits the clinical utility of existing drugs. One way to combat drug resistance is to use combination therapy rather than monotherapy. In this study we have compared the effect of single and combination treatments with four different compounds, i.e. alkylphosphocholine analogues APC12 and APC14, miltefosine (MIL), ketoconazole (KTZ), and amphotericin B (AmpB), on the survival of Leishmania mexicana wild-type promastigotes and a cell line derived from the WT with induced resistance to APC12 (C12Rx). The combination treatment with APC14 and APC16 had a synergistic effect in killing the WT while the combination treatment with KTZ and APC12 or APC14 or APC12 and APC14 had a synergistic effect against C12Rx. More than 90% killing efficiency was obtained using APC12 alone at >1 mg ml-1 against the C12Rx strain; however, combinations with APC14 produced a similar killing efficiency using APC12 at 0.063-0.25 mg ml-1 and APC14 at 0.003-0.5 mg ml-1. These results show that combination therapy can negate induced drug resistance in L. mexicana and that the use of this type of screening system could accelerate the development of drug combinations for clinical use.

Paediatric nurses' knowledge of palliative care in Florida: a quantitative study.

Nurses routinely identify and suggest patients to physicians for possible referral to palliative care and discuss potential referrals with families. Knowledge of palliative care is essential for nurses, especially in paediatrics, where palliative care is less common than with adults. This study uses data from surveys from 279 paediatric nurses across Florida, USA. The palliative care quiz for nursing (PCQN) and the knowledge about hospice quiz (KHQ) were used. On the KHQ at least one-half of the nurses answered six out of seven questions correctly. On the PCQN at least one-half of the nurses answered 12 out of 20 questions correctly. Multivariate analyses show that receiving formal palliative care training and having worked at a hospice were associated with greater knowledge. Paediatric nurses in Florida have a good level of baseline knowledge of palliative care. Nurses' training programs should be used to increase knowledge, which may subsequently lead to more referrals.

Does decisional conflict differ across race and ethnicity groups? A study of parents whose children have a life-threatening illness.

OBJECTIVE: Children with life-threatening illnesses and their families may face a myriad of medical decisions in their lifetimes. Oftentimes these complicated medical decisions cause disagreements among patients, families, and providers about what is the best course of action. Although no evidence exists, it is possible that conflict may affect subgroups of the population differently. This study aims to investigate how decisional conflict varies among racial and ethnic subgroups. SAMPLE: Two hundred sixty-six surveys were completed with parents whose children have a life-threatening illness. All children lived in Florida and were enrolled in the Medicaid program. The Decisional Conflict Scale, overall and broken down into its five distinct subscales, was used to assess parental decision-making. Descriptive, bivariate, and multivariate analyses were conducted. Subgroup analyses were conducted on Latino respondents. RESULTS: Our bivariate results suggest that minority parents report less Effective Decision Making (p<0.05) and report less Support in Decision Making (p<0.05) compared to white, non-Hispanic parents. For the subgroup analysis, we found that those who identify as Mexican American and Central/South American report having greater Uncertainty in Choosing Options (p<0.05) and less Values Clarity (p<0.05) as compared to Puerto Rican or Cuban Americans. Results from the multivariate analyses suggest that those whose primary language is not English are associated with greater Uncertainty in Choosing Options (p<0.05). Values Clarity was lower for children who were diagnosed with their life-threatening condition at birth (p<0.05) as compared to children diagnosed at a later time. CONCLUSIONS: Our study is the first to describe racial and ethnic differences in decisional conflict of parents of children with life-threatening illnesses. Significant differences exist by race, ethnicity, language spoken, and diagnosis time across several subdomains of decisional conflict. These differences are important to address when creating clinical care plans, engaging in shared decision-making, and creating interventions to alleviate decisional conflict.

A randomized trial comparing the VIPON tampon and ibuprofen for dysmenorrhea pain relief.

BACKGROUND: This study was conducted to evaluate the therapeutic efficacy of a device designed to deliver high-frequency vibratory stimulation through direct intravaginal tampon application (VIPON) compared with a low-dose over-the-counter pharmacologic treatment of dysmenorrhea. METHODS: A randomized, open-label, prospective study comparing the investigational device to an oral self-administration of the over-the-counter dose of 200-400 mg of ibuprofen with the onset of menstrual discomfort was conducted at two academic medical centers in the Midwest region of the United States. Women age 18 and older with self-reported dysmenorrhea were treated with either VIPON or a single dose of 200-400 mg of ibuprofen, randomized for each of the next four menstrual cycles, and pain reduction from baseline was measured according to the Melzack-McGill pain scale. RESULTS: Overall, both ibuprofen and VIPON have significant effects on pain reduction according to the Melzack-McGill pain scale. However, the VIPON group achieved statistically significant greater, and more rapid, pain relief at every time point when compared with the ibuprofen. CONCLUSION: VIPON tampon is a viable, nonpharmacologic option to traditional low-dose over-the-counter pharmacologic therapies for menstrual pain management with more rapid onset of action.

Semiautomated multimodal breast image registration.

Consideration of information from multiple modalities has been shown to have increased diagnostic power in breast imaging. As a result, new techniques such as microwave imaging continue to be developed. Interpreting these novel image modalities is a challenge, requiring comparison to established techniques such as the gold standard X-ray mammography. However, due to the highly deformable nature of breast tissues, comparison of 3D and 2D modalities is a challenge. To enable this comparison, a registration technique was developed to map features from 2D mammograms to locations in the 3D image space. This technique was developed and tested using magnetic resonance (MR) images as a reference 3D modality, as MR breast imaging is an established technique in clinical practice. The algorithm was validated using a numerical phantom then successfully tested on twenty-four image pairs. Dice's coefficient was used to measure the external goodness of fit, resulting in an excellent overall average of 0.94. Internal agreement was evaluated by examining internal features in consultation with a radiologist, and subjective assessment concludes that reasonable alignment was achieved.

Using x-ray mammograms to assist in microwave breast image interpretation.

Current clinical breast imaging modalities include ultrasound, magnetic resonance (MR) imaging, and the ubiquitous X-ray mammography. Microwave imaging, which takes advantage of differing electromagnetic properties to obtain image contrast, shows potential as a complementary imaging technique. As an emerging modality, interpretation of 3D microwave images poses a significant challenge. MR images are often used to assist in this task, and X-ray mammograms are readily available. However, X-ray mammograms provide 2D images of a breast under compression, resulting in significant geometric distortion. This paper presents a method to estimate the 3D shape of the breast and locations of regions of interest from standard clinical mammograms. The technique was developed using MR images as the reference 3D shape with the future intention of using microwave images. Twelve breast shapes were estimated and compared to ground truth MR images, resulting in a skin surface estimation accurate to within an average Euclidean distance of 10 mm. The 3D locations of regions of interest were estimated to be within the same clinical area of the breast as corresponding regions seen on MR imaging. These results encourage investigation into the use of mammography as a source of information to assist with microwave image interpretation as well as validation of microwave imaging techniques.

Health status and health-related quality of life in a pediatric palliative care program.

BACKGROUND: Children with life-threatening illnesses have unique physical and psychosocial needs that pediatric palliative care programs can address. Integrated programs strive to address these needs from the point of diagnosis through death, if needed, at the same time that curative care is provided. To better understand the variation in these needs, we assessed the health status and health-related quality of life (HRQOL) of children enrolled in an integrated pediatric palliative care program. METHODS: A telephone survey was conducted with 98 parents whose children were enrolled in an integrated pediatric palliative care program in Florida. The Health Utilities Index (HUI) system was used to assess health status and HRQOL. RESULTS: HUI2 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to self-care, mobility, and sensation, and the least impairment with emotion. HUI3 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to ambulation and cognition and the least impairment with hearing and emotional functioning. Mean overall HUI2 and HUI3 utility scores are 0.37 and 0.15, respectively. CONCLUSION: Children with life-threatening illnesses in our sample had a high level of morbidity compared with those found in other HUI studies of children with acute or chronic health conditions. Not only do our results highlight severely impaired HRQOL, they also demonstrate the wide variety of health states and needs for children in integrated palliative care programs. This information can help develop strategies to encourage more providers to participate in integrated pediatric palliative care programs.

Spirituality of parents of children in palliative care.

AIMS: To determine the spirituality of parents whose children have life-limiting illnesses and to determine the factors associated with parents' spirituality. METHODS: Telephone survey of 129 parents whose children were enrolled in a pediatric palliative care program in Florida. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp) scale was used to measure parents' spirituality. The Health Utilities Index (HUI) was used to measure health status. RESULTS: Parents' average score on the FACIT-Sp meaning/peace subscale was 24.1 out of 32, and 12.5 out of 16 for the faith subscale. Parents' average total FACIT-Sp score was 36.6 of 48. Multivariate analyses show that parental black non-Hispanic race, "other" race, being married, as well as children's higher vision and hearing health status were associated with higher spirituality, as measured by the total FACIT-Sp. Two parent household and children's higher speech health status were associated with lower FACIT-Sp scores. CONCLUSIONS: Our results suggest that non-white parents have greater faith-based and overall spirituality than white parents. Spiritual assessments should be conducted for all parents as differing supportive services may be needed. The palliative care team should ensure that parents' spirituality is being incorporated, as appropriate, into their children's routine care.

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs. OBJECTIVE: To determine how families are impacted and what factors are associated with greater impact. DESIGN: 2008 cross-sectional telephone survey. SETTING: Florida. PATIENTS: Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE: The Impact on Family (IOF) Scale. RESULTS: The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their children's illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family. CONCLUSION: Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.

Music therapy in an integrated pediatric palliative care program.

National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida's Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents' experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P < .05) versus parents whose children did not use music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.

Effect of a pediatric palliative care program on nurses' referral preferences.

PURPOSE: Florida was the first state to develop and implement a publicly funded pediatric palliative care program, which provides supportive care services to children and families from the point of diagnosis onward. Nurses employed by the Florida Department of Health, Children's Medical Services Network (CMSN) play an important role in this program as they are charged with identifying children with life-limiting illnesses in their caseloads for referral to the program. This study aims to estimate the differtences in referral preferences of nurses who work in Partners in Care: Together for Kids (PIC:TFK) program areas versus nurses who work in non-PIC:TFK areas. METHODS: Mail and Web-based surveys were conducted with 279 nurses, 141 of whom work in a PIC:TFK site and 138 did not. RESULTS: Results of the multivariate analyses suggest that few significant differences exist in the nurse's preferences to refer children to pediatric palliative care; however, there were significant differences in the preferred timing of referral. Nurses who work in an PIC:TFK area were 3.7 to 10.4 times as likely as nurses who do not work in a PIC:TFK area to refer children prior to the end of life. CONCLUSION: Our study provides evidence that nurses who have experience with a pediatric palliative care program are more likely to refer children to programs before the end of life. While our study results are encouraging, they also suggest that as the PIC:TFK program expands nurse training will be essential for equitable and appropriate referrals across a diverse set of illnesses.

Partners in care: together for kids: Florida's model of pediatric palliative care.

BACKGROUND: Many children with life-limiting illnesses in the United States could benefit from pediatric palliative care. However, national, state, and local barriers exist that hinder provision. One national barrier is the Medicare hospice reimbursement regulation that limits the provision of government subsidized hospice care to the final 6 months of life. In response to the critical need to provide palliative care earlier in children's illnesses, Florida became the first state to develop and implement an innovative model of care that provides services from the point of diagnosis onward, thereby waiving the 6-month reimbursement rule. In July 2005, the Partners in Care: Together for Kids program began. The program relies on partnerships between state-employed care coordinators who identify the children for possible enrollment and hospice staff who provide home and community-based services. OBJECTIVE: Our objective was to describe Florida's experiences in designing, implementing, and operating the program. DESIGN: Surveys were conducted with parents, hospices, and state agencies. Enrollment trends were identified using administrative data. RESULTS: As of January 2008, 468 children have been enrolled in the program. Approximately 85% of parents report they are satisfied with the program and 95% of parents would recommend the program. CONCLUSION: Florida's program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Florida's experiences will help guide other states and health plans that desire to implement a similar model of care.