Care Settings Research Articles

Use of Recommended Neurodiagnostic Evaluation Among Patients With Drug-Resistant Epilepsy

Interdisciplinary practice parameters recommend that patients with drug-resistant epilepsy (DRE) undergo comprehensive neurodiagnostic evaluation, including presurgical assessment. Reporting from specialized centers suggests long delays to referral and underuse of surgery; however, longitudinal data are limited to characterize neurodiagnostic evaluation among patients with DRE in more diverse US settings and populations. To examine the rate and factors associated with neurodiagnostic studies and comprehensive evaluation among patients with DRE within 3 US cohorts. A retrospective cross-sectional study was conducted using the Observational Medical Outcomes Partnership Common Data Model including US multistate Medicaid data, commercial claims data, and Columbia University Medical Center (CUMC) electronic health record data. Patients meeting a validated computable phenotype algorithm for DRE between January 1, 2015, and April 1, 2020, were included. No eligible participants were excluded. Demographic and clinical variables were queried. The proportion of patients receiving a composite proxy for comprehensive neurodiagnostic evaluation, including (1) magnetic resonance or other advanced brain imaging, (2) video electroencephalography, and (3) neuropsychological evaluation within 2 years of meeting the inclusion criteria. A total of 33 542 patients with DRE were included in the Medicaid cohort, 22 496 in the commercial insurance cohort, and 2741 in the CUMC database. A total of 31 516 patients (53.6%) were women. The proportion of patients meeting the comprehensive evaluation main outcome in the Medicaid cohort was 4.5% (n = 1520); in the commercial insurance cohort, 8.0% (n = 1796); and in the CUMC cohort, 14.3% (n = 393). Video electroencephalography (24.9% Medicaid, 28.4% commercial, 63.2% CUMC) and magnetic resonance imaging of the brain (35.6% Medicaid, 43.4% commercial, 52.6% CUMC) were performed more regularly than neuropsychological evaluation (13.0% Medicaid, 16.6% commercial, 19.2% CUMC) or advanced imaging (3.2% Medicaid, 5.4% commercial, 13.1% CUMC). Factors independently associated with greater odds of evaluation across all 3 data sets included the number of inpatient and outpatient nonemergency epilepsy visits and focal rather than generalized epilepsy. The findings of this study suggest there is a gap in the use of diagnostic studies to evaluate patients with DRE. Care setting, insurance type, frequency of nonemergency visits, and epilepsy type are all associated with evaluation. A common data model can be used to measure adherence with best practices across a variety of observational data sources.

Association of viral loads of influenza A (H3N2) with age and care setting on presentation—a prospective study during the 2022-2023 influenza season in Spain

ObjectivesThe aim of this study was to analyze the viral load (VL) using cycle threshold (Ct) in patients infected with influenza A (H3N2). MethodsThis prospective study was conducted during the 2022-2023 influenza season in sentinel, non-sentinel, and hospitalized patients of Castilla y León (Spain). Respiratory samples were obtained from nasopharyngeal swabs and analyzed by quantitative reverse transcription-polymerase chain reaction specific for influenza A (H3N2) to obtain the Ct value. ResultsA total of 1047 individuals were enrolled (174 [16.6%] sentinel, 200 [19.1%] non-sentinel, 673 [64.3%] hospitalized). The mean Ct value was lower in infants, young children, and in the elderly, with a sharp increase in the last from 65 years until 90 years. In addition, the lower Ct values were observed in non-sentinel patients and then in hospitalized patients, probably because non-sentinel are outpatients in the acute phase of the influenza infection. ConclusionsA higher VL (lower Ct value) is related to the extreme ages of life: children and the elderly. Furthermore, a higher VL is related with the care setting, being probably higher in outpatients because they are in the acute phase of the disease and slightly lower in hospitalized patients because they are attended during the post-acute phase.

Medical Costs of Respiratory Syncytial Virus–Associated Hospitalizations and Emergency Department Visits in Children Aged Younger Than 5 Years: Observational Findings from the New Vaccine Surveillance Network, 2016-2019

To assess medical costs of hospitalizations and emergency department (ED) care associated with respiratory syncytial virus (RSV) disease in children enrolled in the New Vaccine Surveillance Network. We used accounting and prospective surveillance data from 6 pediatric health systems to assess direct medical costs from laboratory-confirmed RSV-associated hospitalizations (n=2007) and ED visits (n=1267) from 2016 through 2019 among children aged <5years. We grouped costs into categories relevant to clinical care and administrative billing practices. We examined RSV-associated medical costs by care setting using descriptive and bivariate analyses. We assessed associations between known RSV risk factors and hospitalization costs and length of stay using χ2 tests of association. The median cost was $7100 (IQR $4006-$13 355) per hospitalized child and $503 (IQR $387-$930) per ED visit. Eighty percent (n=2628) of our final sample were children aged younger than 2years. Fewer weeks' gestational age was associated with greater median costs in hospitalized children (P<.001, ≥37weeks of gestational age: $6840 [$3905-$12 450]; 29-36weeks of gestational age: $7721 [$4362-$15 274]; <29 weeks of gestational age: $9131 [$4518-$19 924]). Infants born full term accounted for 70% of the total expenditures in our sample. Almost three quarters of the health care dollars spent originated in children younger than 12months of age, the primary age group targeted by recommended RSV prophylactics. Reducing the cost burden for RSV-associated medical care in young children will require prevention of RSV in all young children, not just high-risk infants. Newly available maternal vaccine and immunoprophylaxis products could substantially reduce RSV-associated medical costs.

Sex Differences in Healthcare Utilization in Persons Living with Dementia Between 2000 and 2017: A Population-Based Study in Quebec, Canada.

Objectives: Describe sex differences in healthcare utilization and mortality in persons with new dementia in Quebec, Canada. Methods: We conducted a repeated cohort study from 2000 to 2017 using health administrative databases. Community-dwelling persons aged 65+ with a new diagnosis of dementia were included. We measured 23 indicators of healthcare use across five care settings: ambulatory care, pharmacological care, acute hospital care, long-term care, and mortality. Clinically meaningful sex differences in age-standardized rates were determined graphically through expert consultations. Results: Women with dementia had higher rates of ambulatory care and pharmacological care, while men with dementia had higher acute hospital care, admission to long-term care, and mortality. There was no meaningful difference in visits to cognition specialists, antipsychotic prescriptions, and hospital death. Discussion: Men and women with dementia demonstrate differences in healthcare utilization and mortality. Addressing these differences will inform decision-makers, care providers and researchers and guide more equitable policy and interventions in dementia care.

An exploratory study of Saudi parents' perceptions and beliefs about institutional and home care for children with disabilities

Quality care is critical to the quality of life and well-being of persons with disabilities. However, children with disabilities face unprecedented challenges which include access to assistive technology and rehabilitative devices, social exclusion, and negative attitudes in their various care settings. The present qualitative study seeks to understand parents' perceptions of home or institutional care for children with disabilities. The study utilized an exploratory qualitative approach paradigm with five focus groups in the Qassim region of Saudi Arabia. Framework data analysis identified opposing and supporting perspectives for home and institutional-based care. Beneficial aspects of home care relate to cultural upbringing and the opportunity to acquire social and daily living skills. Families believe there are benefits of institutional care because such care settings have specialists and resources to support persons with disabilities. They argue for these resources to be linked to disability cases in families to optimize the development of children with disabilities. The study concluded that a dedicated care team to support families to cater to the needs of their children with disabilities at home is preferred over institutional-based care.

Immigrant-blind care: How immigrants experience the “inclusive” health system as they access care

A growing body of scholarship examines the varying impact of legal status and race on accessing healthcare. However, a notable gap persists in comprehending the supplementary mechanisms that hinder immigrants' pathway to seek care. Drawing on ethnographic observations in various clinical settings and in-depth interviews with 28 healthcare professionals and 12 documented Haitian immigrants in a city in Upstate New York, between 2019 and 2021, I demonstrate the tension between the conceptualization and implementation of inclusive care practices by healthcare providers. I argue that the mere expansion and adoption of inclusive discourse among providers do not inherently ensure equity and the removal of barriers to healthcare access. This work contributes to the social study of medicine and race and ethnic studies by introducing the innovative concept of “immigrant-blind.” Through this concept, the research sheds light on how providers' conceptualization of inclusivity proclaims medical encounters to be devoid of stratifications and rationalizes their practices which mask the profound impact of immigration status and immigration on immigrant health. Furthermore, these practices reinforce existing divisions within care settings and medical encounters, where immigration laws and enforcement practices operate and further exacerbate stratifications. By examining providers' uninformed implementation of culturally competent care practices, the findings reveal that providers stigmatize and essentialize immigrants during medical encounters. This highlights the imperative for a more nuanced and informed approach to healthcare provision, where genuine inclusivity is upheld, and barriers to access are dismantled to foster equitable and dignified healthcare experiences for all.

Effectiveness of an Artificial Intelligence–Enabled Intervention for Detecting Clinical Deterioration

Inpatient clinical deterioration is associated with substantial morbidity and mortality but may be easily missed by clinicians. Early warning scores have been developed to alert clinicians to patients at high risk of clinical deterioration, but there is limited evidence for their effectiveness. To evaluate the effectiveness of an artificial intelligence deterioration model-enabled intervention to reduce the risk of escalations in care among hospitalized patients using a study design that facilitates stronger causal inference. This cohort study used a regression discontinuity design that controlled for confounding and was based on Epic Deterioration Index (EDI; Epic Systems Corporation) prediction model scores. Compared with other observational research, the regression discontinuity design facilitates causal analysis. Hospitalized adults were included from 4 general internal medicine units in 1 academic hospital from January 17, 2021, through November 16, 2022. An artificial intelligence deterioration model-enabled intervention, consisting of alerts based on an EDI score threshold with an associated collaborative workflow among nurses and physicians. The primary outcome was escalations in care, including rapid response team activation, transfer to the intensive care unit, or cardiopulmonary arrest during hospitalization. During the study, 9938 patients were admitted to 1 of the 4 units, with 963 patients (median [IQR] age, 76.1 [64.2-86.2] years; 498 males [52.3%]) included within the primary regression discontinuity analysis. The median (IQR) Elixhauser Comorbidity Index score in the primary analysis cohort was 10 (0-24). The intervention was associated with a -10.4-percentage point (95% CI, -20.1 to -0.8 percentage points; P = .03) absolute risk reduction in the primary outcome for patients at the EDI score threshold. There was no evidence of a discontinuity in measured confounders at the EDI score threshold. Using a regression discontinuity design, this cohort study found that the implementation of an artificial intelligence deterioration model-enabled intervention was associated with a significantly decreased risk of escalations in care among inpatients. These results provide evidence for the effectiveness of this intervention and support its further expansion and testing in other care settings.

Inter- and intraobserver agreement of antenatal cardiotocography assessments by maternity care professionals: A prospective study.

In the Netherlands, antenatal cardiotocography (aCTG) to assess fetal well-being is performed in obstetrician-led care. An innovative initiative was started to evaluate whether aCTG for specific indications-reduced fetal movements, external cephalic version, or postdate pregnancy-is feasible in non-obstetrician-led care settings by independent primary care midwives. Quality assessment is essential when reorganizing and shifting tasks and responsibilities. Therefore, we aimed to assess the inter- and intraobserver agreement for aCTG assessments between and within four professional groups involved in Dutch maternity care regarding the overall classification and assessment of the various components of aCTG. This was a prospective study among 47 Dutch primary care midwives, hospital-based midwives, residents, and obstetricians. Ten aCTG traces were assessed twice at a 1 month interval. To ensure a representative sample, we used two different sets of 10 aCTG traces each. We calculated the degree of agreement using the proportions of agreement. The proportions of agreement for interobserver agreement on the classification of aCTG between and within the four professional groups varied from 0.82 to 0.94. The proportions of agreement for each professional group were slightly higher for intraobserver (0.86-0.94) than for interobserver agreement. For the various aCTG components, the proportions of agreement for interobserver agreement varied from 0.64 (presence of contractions) to 0.98 (baseline heart frequency). The proportion of agreement levels between and within the maternity care professionals in the classification of aCTG traces among healthy women were comparable. This means that these professional groups are equally well able to classify aCTGs in healthy pregnant women.

Pharmacist-led medication reconciliation service for patients after discharge from tertiary hospitals to primary care in Singapore: a qualitative study.

Medication discrepancies commonly occur when patients are transferred between care settings. Despite the presence of medication reconciliation services (MRS), medication discrepancies are still prevalent, which has clinical costs and implications. This study aimed to explore the perspectives of various stakeholders on how the MRS can be optimized in Singapore. This is a descriptive qualitative study. Semi-structured interviews with 30 participants from the National Healthcare Group, including family physicians (N = 10), pharmacists (N = 10), patients recently discharged from restructured hospitals (N = 7) and their caregivers (N = 3) were conducted. All transcribed interviews were coded independently by three coders and inductive thematic analysis approach was used. Five core themes were identified. (1) The MRS enhanced healthcare services in various aspects including efficiency and health literacy; (2) There were several challenges in delivering the MRS covering processes, technology and training; (3) Issues with suitable patient selection and follow-up; (4) Barriers to scaling up of MRS that involve various stakeholders, cross-sector integration and environmental restrictions; and finally (5) Role definition of the pharmacist to all the stakeholders. This study identified the role of MRS in enhancing healthcare services and explored the challenges encountered in the provision of MRS from family physicians, pharmacists, patients and their caregivers. These findings supported the need for a shift of MRS towards a more comprehensive medication review model. Future improvement work to the MRS can be conducted based on the findings.

What contributes to promote sexual health in cancer palliative care? A realist review.

Sexuality is an important determinant of the overall health of a population and remains so at the end of life and in patients with advanced cancers. Despite the abundant literature on sexuality and intimacy, these topics have been rarely discussed in the context of cancer palliative care, and very few interventions to promote sexual health in patients undergoing cancer palliative care have been explored. In this study we sought to identify which factors and mechanisms contribute to promoting sexual health in cancer palliative care. A realist review was performed according to the guidelines of the realist and meta-narrative evidence synthesis method guidelines. Articles published between January 2010 and June 2021 were searched in 4 databases. Records were screened for their relevance regarding a predefined list of context-mechanism-outcome (CMO) configurations. Abstracts were independently screened by 2 authors before the data were extracted from the full-text articles selected for inclusion. With the use of abductive and retroductive reasoning techniques, each article was examined for evidence of its contribution to one of the CMO configurations, which could be refined when relevant. The data were summarized according to the final CMO configurations. Of the 2056 articles identified, 38 articles were included in the review. The data reported in these articles contributed to 7 CMO hypotheses: (1) improving communication skills, (2) healthcare provider training, (3) reorganizing the patient environment in care settings or at home, (4) managing sexual symptoms and also general symptoms, (5 and 6) patient-centered counseling or couple counseling, and (7) lifting the taboo. The findings reported here highlight various ways to improve sexual health for patients in cancer palliative care but are limited to genital cancers. Further research should consider all types of cancer rather than being restricted to genital cancers.

The specialized pediatric palliative care service in Italy: how is it working? Results of the nationwide PalliPed study

BackgroundAccurate estimation of the specialized pediatric palliative care (PPC) burden and the definition of the extent and quality of PPC service in Italy represent urgent needs to enable the proper allocation of PPC resources and the definition of prevention and educational plans. The PalliPed project aimed to provide the first comprehensive assessment of the characteristics of Italian patients requiring PPC, the quality and extent of regional PPC networks/facilities, and the number of dedicated resources. In this paper, we present the results of the second part of the project, regarding the implementation and quality of PPC services in Italy.MethodsThe PalliPed study had an observational cross-sectional design. All Italian specialized PPC centers/facilities were invited to participate in the project and complete a survey on the characteristics of PPC centers/facilities in different care settings, reporting data as of 24 October 2022. Data were collected online.Results19 PPC specialized centers/facilities from 12 Italian regions and two autonomous provinces responded to the survey. Among them, 11 are regional referral centers. Seven Italian regions out of 20 reported no PPC centers/facilities, mainly in central-southern Italy. Less than half (45%) of the regional referral centers cover the entire regional territory, and three offer 24/7 service. Ten centers have a dedicated team. Half of the eight non-referral centers offer 24/7 service and have a dedicated team. A total of 1,092 patients were reported by 18 centers as of 24 October 2022. Over the years, an increasing number of patients has been reported, rising from 1,202 (2019) to 1,544 (2021). The dedicated staff is inadequate, and most healthcare providers are not recognized at an institutional level. A shortage of ‘young’ staff and a lack of specific training was reported, particularly among nurses (77% had no training in PPC).ConclusionsThe results obtained show how training, information, and research interventions are still necessary for the reorganization of the available resources and definition of proper strategies to respond dynamically to the new emerging needs of these populations. At the same time, our study represents a first step in defining a national registry of PPC models, useful for monitoring evolutions, and critical issues and planning any new or corrective strategy.

The impact of the COVID-19 pandemic on nursing home professionals: results of the RESICOVID project

ObjectivesThe situation caused by the COVID-19 pandemic has had an impact on the mental, physical, and social health of nursing home staff. The operations and protocols of long-term care facilities had to be adapted to a new, unforeseen, and unknown situation in which a devastating and highly contagious disease was causing large numbers of deaths. The aim of this study was to determine the cumulative impact of the COVID-19 pandemic on care, technical, coordinating-supervisory, and managerial staff working in nursing homes.MethodsCorrelation analysis and between-group comparisons were carried out to study the relationship between burnout scores, emotional balance, and organic and behavioral symptoms.ResultsThe results indicate high levels of burnout and psychological exhaustion. Management professionals displayed higher levels of organic and behavioral symptoms than other professional categories in the same care settings. Despite this negative symptomatology, most professionals showed a positive emotional balance.ConclusionThe need to develop intervention programs to improve the mental, physical, and occupational health of the staff in nursing homes, considering the needs of different professional categories, is emphasized.

Implementation of evidence-based interventions according to the Swedish National Guidelines for Strokecare: a nationwide survey among physiotherapists.

To investigate (i) to what extent physiotherapists (PTs) working in stroke rehabilitation in various parts of the stroke care chain have implemented interventions according to the national guidelines for stroke (NGS), (ii) facilitating and hindering factors for the implementation, and (iii) differences between various care settings. A cross-sectional study. 148 PTs working in stroke rehabilitation in various parts of the care chain in Sweden. Data were collected by a web-based survey. Task-specific training for walking (80-98%), impaired motor function (64-100%) and fall prevention (73-92%) were most implemented. Factors that facilitated implementation were: important to comply with the NGS, that PTs had confidence to perform the interventions, and that interventions were clearly described. Limited time, lack of resources, no clear goals or routines at the workplace hindered the implementation. Significant differences (p < 0.05) between the settings existed. Municipal and primary care reported most challenges in implementing the NGS and providing evidence-based interventions. Most interventions, with high priority according to NGS, are provided by PTs working in stroke rehabilitation, although differences in various parts of the care chain exist. Knowledge, time, education and supportive management are important factors when implementing evidence-based interventions.

COVID-19-Related Work Absenteeism and Associated Lost Productivity Cost in Germany: A Population-Based Study.

The aim of the study is to estimate COVID-19 absenteeism and indirect costs, by care setting. A population-based retrospective cohort study using data from the German Statutory Health Insurance (SHI) database to define outpatient (April 2020-December 2021) and hospitalized (April 2020-October 2022) cohorts of employed working-aged individuals. In the outpatient cohort ( N = 369,220), median absenteeism duration and associated cost was 10.0 (Q1, Q3: 5.0, 15.0) days and €1061 (530, 1591), respectively. In the hospitalized cohort ( n = 20,687), median absenteeism and associated cost was 15.0 (7.0, 32.0) days and €1591 (743, 3394), respectively. Stratified analyses showed greater absenteeism in older workers, those at risk, and those with severe disease. The hospitalized cohort had longer absenteeism resulting in higher productivity loss. Being older, at risk of severe COVID-19 and higher disease severity during hospitalization were important drivers of higher absenteeism duration.

Perspectives and Experiences of Healthcare Professionals Involved in a Community Nurse-Delivered Shared Care Model Intervention Designed to Support Outpatients Receiving Chemotherapy: A Qualitative Study Using Interviews

Background. Chemotherapy can cause a range of side effects including nausea, vomiting, diarrhea, and infection, which can have a significant impact on an individual’s quality of life. Survival outcomes can be impacted when side effects are poorly managed, leading to failure to complete the defined dose of treatment. Objective. This study presents clinicians’ experiences with a shared care model involving home-based community nurse (CN) support to improve side-effect management of individuals receiving chemotherapy as an outpatient. Methods. A qualitative study was conducted with CNs, cancer nurses, medical oncologists, and a general practitioner involved in the CN intervention delivered as part of a randomized controlled trial (RCT) aimed at reducing unplanned presentations to hospital of cancer patients receiving outpatient chemotherapy. Semistructured individual and focus group interviews were conducted. Key themes were identified using thematic analysis. Findings. Twenty-three healthcare professionals were interviewed. Three themes were identified: (1) being able to enhance patient-centered care and clinical practice during chemotherapy; (2) importance of effective communication and collaborative relationships between different care settings; and (3) ways to adapt the intervention for implementation in routine clinical practice. Participants reported that it was feasible for CNs to care for this patient group, and their home visits enabled preemptive symptom management. Suggestions to improve and modify the intervention to implement this care model within existing clinical care included a flexible approach, such as a blended delivery with face-to-face visits and telephone calls; a risk- or needs-based approach to prioritize patient groups more likely to benefit from the intervention; and sharing of electronic medical records for more effective collaboration and communication. Conclusions. A CN-delivered shared care model provided a feasible approach to the provision of individualized support for outpatients receiving chemotherapy. This study suggests ways to adapt this care model into existing clinical workflow and structures. This trial is registered with ACTRN12614001113640.

Teacher perceptions of parent collaboration in multi-ethnic ECEC settings

IntroductionFor teachers working in multi-ethnic early childhood education and care settings, a strong collaboration with parents may be an important mechanism for supporting young children's language development. However, little research has investigated how teachers perceive their communication with parents from diverse backgrounds and what centre-level factors predict the quality of teacher-parent collaboration.MethodsThis study sought to explore teacher-parent collaboration within early childhood education and care in urban multi-ethnic areas of Norway, using survey data from 266 teachers across 56 centres and 198 classrooms. We examined whether teacher characteristics (education, experience and self-efficacy) and centre linguistic diversity were related to teacher perceived communication with parents regarding ways of supporting children's dual language development and teacher experienced challenges in parent collaboration.ResultsResults revealed that teachers with higher self-efficacy communicated more with parents and experienced less challenges in collaboration with them. Furthermore, more experienced teachers working in more linguistically diverse centres identified more challenges in parent collaboration, while these characteristics were not related to communication. Teacher education was not associated with communication nor challenges in parent collaboration.DiscussionOur results indicate that professional development measures targeted at strengthening teacher self-efficacy might be an important mechanism to promote parent collaboration, particularly in multi-ethnic education settings.

US Medicare Hospice and Palliative Medicine Physician Workforce and Service Delivery in 2008-2020

ContextDespite clinical benefits of early palliative care, little is known about Medicare physician workforce specialized in Hospice and Palliative Medicine (HPM) and their service delivery settings. ObjectivesTo examine changes in Medicare HPM physician workforce and their service delivery settings in 2008–2020. MethodsUsing the Medicare Data on Provider Practice and Specialty from 2008 to 2020, we identified 2375 unique Medicare Fee-For-Service (FFS) physicians (15,565 physician-year observations) with self-reported specialty in “Palliative Care and Hospice”. We examined changes in the annual number of HPM physicians, average number of Medicare services overall and by care setting, total number of Medicare FFS beneficiaries, and total Medicare allowed charges billed by the physician. ResultsThe number of Medicare HPM physicians increased 2.32 times from 771 in 2008 to 1790 in 2020. The percent of HPM physicians practicing in metropolitan areas increased from 90% to 96% in 2008–2020. Faster growth was also observed in female physicians (52.4% to 60.1%). Between 2008 and 2020, we observed decreased average annual Medicare FFS beneficiaries (170 to 123), number of FFS services (467 to 335), and Medicare allowed charges billed by the physician ($47,230 to $37,323). The share of palliative care delivered in inpatient settings increased from 47% to 68% in 2008–2020; whereas the share of services delivered in outpatient settings decreased from 37% to 19%. ConclusionDespite growth in Medicare HPM physician workforce, access is disproportionately concentrated in metropolitan and inpatient settings. This may limit receipt of early outpatient specialized palliative care, especially in nonmetropolitan areas.

British association for sexual health and HIV national guideline for the management of anogenital warts in adults (2024).

This guideline offers recommendations on the diagnosis, treatment and health promotion principles needed for the effective management of human papillomavirus (HPV)-related warts at anogenital sites including the external genitals, vagina, cervix, urethra, perianus and anal canal. The guideline is aimed primarily at patients aged 16years or older presenting to healthcare professionals working in level 3 sexual health services in the United Kingdom. However, the principles of the recommendations may be applied in other care settings, including in primary care, using locally adapted care pathways where appropriate. The management of HPV-related anogenital dysplasia or warts at other extragenital sites is outside the scope of this guideline.

Development of the Parental Experience with Care for Children with Serious Illnesses (PRECIOUS) quality of care measure

BackgroundParent-reported experience measures are part of pediatric Quality of Care (QoC) assessments. However, existing measures were not developed for use across multiple healthcare settings or throughout the illness trajectory of seriously ill children. Formative work involving in-depth interviews with parents of children with serious illnesses generated 66 draft items describing key QoC processes. Our present aim is to develop a comprehensive parent-reported experience measure of QoC for children with serious illnesses and evaluate its content validity and feasibility.MethodsFor evaluating content validity, we conducted a three-round Delphi expert panel review with 24 multi-disciplinary experts. Next, we pre-tested the items and instructions with 12 parents via cognitive interviews to refine clarity and understandability. Finally, we pilot-tested the full measure with 30 parents using self-administered online surveys to finalize the structure and content.ResultsThe Delphi expert panel review reached consensus on 68 items. Pre-testing with parents of seriously ill children led to consolidation of some items. Pilot-testing supported feasibility of the measure, resulting in a comprehensive measure comprising 56 process assessment items, categorized under ten subthemes and four themes: (1) Professional qualities of healthcare workers, (2) Supporting parent-caregivers, (3) Collaborative and holistic care, and (4) Efficient healthcare structures and standards. We named this measure the PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS).ConclusionsPRECIOUS is the first comprehensive measure and has the potential to standardize assessment of QoC for seriously ill children from parental perspectives. PRECIOUS allows for QoC process evaluation across contexts (such as geographic location or care setting), different healthcare workers, and over the illness trajectory for children suffering from a range of serious illnesses.

Knowledge, perceptions, and beliefs about urinary tract infections in persons with neurogenic bladder and impacts on interventions to promote person-centered care.

Qualitative study. To explore how knowledge, perceptions, and beliefs about urinary tract infections (UTIs) among persons with neurogenic bladder (NB) may impact health behaviors and provider management and enhance person-centeredness of interventions to improve UTI management. Three Veterans Affairs (VA) medical centers. Adults with NB due to spinal cord injury/disorder (SCI/D) or multiple sclerosis (MS) with UTI diagnoses in the prior year participated in focus groups. Transcripts were coded using deductive codes linked to the Health Belief Model and inductive codes informed by grounded theory. Twenty-three Veterans (SCI/D, 78%; MS: 18.5%) participated in discussions. Three themes emerged: (1) UTI knowledge; (2) factors affecting the intervention environment; and (3) factors affecting modes of delivery. Knowledge gaps included UTI prevention, specific symptoms most indicative of UTI, and antibiotic side effects. Poor perceptions of providers lacking knowledge about NB and ineffective patient-provider communication were common in the Emergency Department and non-VA facilities, whereas participants had positive perceptions of home-based care. Participants perceived lower severity and frequency of antibiotic risks compared to UTI risks. Participant preferences for education included caregiver involvement, verbal and written materials, and diverse settings like peer groups. Identifying patient perspectives enhances person-centeredness and allows for novel interventions improving patient knowledge and behaviors about UTIs. Partnering with trusted providers and home-based caregivers and improving NB knowledge and communication in certain care settings were important. Patient education should address mental risk representations and incorporate preferences for content delivery to optimize self-efficacy and strengthen cues to action.