Microneedle patch-based enzyme-linked immunosorbent assay to quantify protein biomarkers of tuberculosis.

There is a clinical need for differential diagnosis of the latent versus active stages of tuberculosis (TB) disease by a simple-to-administer test. Alpha-crystallin (Acr) and early secretory antigenic target-6 (ESAT-6) are protein biomarkers associated with the latent and active stages of TB, respectively, and could be used for differential diagnosis. We therefore developed a microneedle patch (MNP) designed for application to the skin to quantify Acr and ESAT-6 in dermal interstitial fluid by enzyme-linked immunosorbent assay (ELISA). We fabricated mechanically strong microneedles made of polystyrene and coated them with capture antibodies against Acr and ESAT-6. We then optimized assay sensitivity to achieve a limit of detection of 750 pg/ml and 3,020 pg/ml for Acr and ESAT-6, respectively. This study demonstrates the feasibility of an MNP-based ELISA for differential diagnosis of latent TB disease.

A pilot study to improve provider adherence to NAEPP guidelines.

The prevalence and morbidity of Asthma in the United States has increased since the 1991 National Asthma Education and Prevention Program (NAEPP) and updated Expert Panel Report -3 (EPR-3) guidelines in 2007 were published. To improve provider adherence to the NAEPP EPR-3 guidelines Children's Hospital of Orange County (CHOC) in California integrated the HealtheIntentSM Pediatric Asthma Registry (PAR) into the electronic medical record (EMR) in 2015. METHODS: A serial cross-sectional design was used to compare provider management of CHOC MediCal asthma patients before 2014 (N = 6606) and after 2018 (N = 6945) integration of the Registry with NAEPP guidelines into the EMR. Four provider adherence measures (Asthma Control Test [ACT], Asthma Action Plan [AAP], inhaled corticosteroids [ICS] and spacers) were evaluated using General Linear Mixed Models and Chi square. FINDINGS: In 2018, patients were more likely to receive an ACT, (OR = 14.95, 95% CI 12.67, 17.65, p < .001), AAP (OR = 12.70, 95% CI 11.10, 14.54, p < .001), ICS (OR = 1.85, 95% CI 8.52, 14.54, p < .001) and spacer (OR = 1.45, 95% CI 1.31, 1.6, p < .001) compared to those in 2014. DISCUSSION: The pilot study showed integration of the Pediatric Asthma Registry into the EMR, as a computer decision support tool that was an effective intervention to increase provider adherence to NAEPP guidelines. Ongoing monitoring and education are needed to promote and sustain provider behavioral change. Additional research to include multi-sites and decreased time between evaluation years is recommended. APPLICATION TO PRACTICE: Can be used for excellent health policy decision making as a direct impact on patient care and outcomes, by improving provider adherence to the NAEPP guidelines.

National Kidney Foundation Laboratory Engagement Working Group Recommendations for Implementing the CKD-EPI 2021 Race-Free Equations for Estimated Glomerular Filtration Rate: Practical Guidance for Clinical Laboratories.

Recognizing that race is a social and not a biological construct, healthcare professionals and the public have called for removal of race in clinical algorithms. In response, the National Kidney Foundation and the American Society of Nephrology created the Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Diseases to examine the issue and provide recommendations. The final report from the Task Force recommends calculating estimated glomerular filtration rate (eGFR) without a race coefficient using the recently published CKD-EPI 2021 creatinine (cr) and creatinine-cystatin C (cr-cys) equations. The Task Force recommends immediately replacing older eGFRcr equations (MDRD Study and CKD-EPI 2009) with the new CKD-EPI 2021 equation. In a 2019 survey by the College of American Pathologists, 23% of 6200 laboratories reporting eGFRcr used an incorrect equation that is not suitable for use with standardized creatinine measurements, 34% used the CKD-EPI 2009 equation and 43% used the MDRD Study 2006 equation re-expressed for standardized creatinine measurement. Rapid transition to using the CKD-EPI 2021 equation is an opportunity for laboratories to standardize to a single equation to eliminate differences in eGFRcr due to different equations used by different laboratories, and to report eGFR without use of race. We provide guidance to laboratories for implementing the CKD-EPI 2021 equations for both eGFRcr and eGFRcr-cys.

Medieval menarche: Changes in pubertal timing before and after the Black Death.

OBJECTIVES: Bioarcheological evidence suggests stature increased in males but decreased in females after the Black Death (1348-1350 CE). Because tradeoffs between growth and reproduction can result in earlier ages at menarche and lower limb length, we assess menarcheal age between 1120 and 1540 CE to better understand the health of medieval adolescent females before and after the plague. MATERIALS AND METHODS: Our sample comprises 74 adolescent females from St. Mary Spital, London (1120-1540 CE) within the age range during which menarche occurs (10-25 years). They were assessed as being pre- or post-menarcheal and divided into three groups: Early Pre-Black Death (n = 13), Late Pre-Black Death (n = 38), and Post-Black Death (n = 23). Changes in the ages of pre- and post-menarcheal females were assessed using Mann-Whitney tests. RESULTS: The average age of post-menarcheal females increased from the Early- to Late Pre-Black Death periods and declined after the Black Death. CONCLUSIONS: Short stature can reflect unfavorable growth environments, while younger menarcheal age indicates improved living conditions. The paradoxical pattern of female, but not male, stature reduction after the Black Death might reflect the association of early menarche with lower limb length and signal that adolescent females experienced improved health conditions after the epidemic. Our focus on pre- and post-menarche within a limited age span provides a novel approach for inferring average ages of menarche over time. Pathways to skeletal development and reproductive investment are part of an integrated system, providing a bridge between life history research in bioarchaeology and human biology.

Item Generation and Reduction Toward Developing a Patient-reported Outcome for Pediatric Ulcerative Colitis (TUMMY-UC).

BACKGROUND: The Pediatric Ulcerative Colitis Activity Index (PUCAI) is a noninvasive clinician-based index, which reflects disease severity in pediatric ulcerative colitis (UC) when no endoscopy is performed. Here, we aimed to explore signs and symptoms important to children with UC and their caregivers as the first stage of developing a patient-reported outcome (PRO) measure for pediatric UC (ie, the TUMMY-UC index) to supplement endoscopic assessment. METHODS: Concept elicitation qualitative interviews were performed with children who have UC and their caregivers in 6 centers. Items were rank-ordered by the interviewees according to the frequency of endorsement and importance, graded on a 1 to 5 scale. RESULTS: A total of 46 children (ages 12.5 ±â€Š3.3 years, range 7-18, 48% boys, 83% with pancolitis, 24% with moderate-severe disease) and 33 caregivers were interviewed (ie, 79 interviews). The following items were identified by the children, in decreasing order of weights: abdominal pain (importance × frequency weight 3.9), rectal bleeding (3.6), stool frequency (3.0), stool consistency (3.0), general well-being/fatigue (2.9), urgency (1.9), and nocturnal stools (1.6). Two other items were scored lower: lack of appetite (1.1) and weight loss (0.6). Children 13 to 18 years comprehended adult vocabulary, children 8 to 12 years comprehended simple vocabulary, and younger children had poor understanding in completing the questions. CONCLUSIONS: In this first stage of the TUMMY-UC development, items were generated and ranked by input from patients. These items are now being explored for optimal vocabulary and response options. The TUMMY-UC will supplement the PUCAI in clinical trial outcome assessment.

Poundbury Camp in Context-a new Perspective on the Lives of Children from urban and rural Roman England.

OBJECTIVES: The current understanding of child morbidity in Roman England is dominated by studies of single sites/regions. Much of the data are derived from third to fifth century AD Poundbury Camp, Dorchester, Dorset, considered an unusual site due to high levels of non-adult morbidity. There is little understanding of children in rural areas, and whether Poundbury Camp was representative of Romano-British childhood. MATERIALS AND METHODS: The study provides the first large scale analysis of child health in urban and rural Roman England, adding to the previously published intra-site analysis of non-adult paleopathology at Poundbury Camp. Age-at-death and pathology prevalence rates were reassessed for 953 non-adults (0-17 years) from five major urban, six minor urban, and four rural sites (first to fifth century AD). The data were compared to the results from 364 non-adults from Poundbury Camp. RESULTS: Rural sites demonstrated higher levels of infant burials, and greater prevalence of cribra orbitalia in the 1.1-2.5 year (TPR 64.3%), and 6.6-10.5 year cohorts (TPR 66.7%). Endocranial lesions were more frequent in the minor urban sample (TPR 15.9%). Three new cases of tuberculosis were identified in urban contexts. Vitamin D deficiency was most prevalent at Poundbury Camp (CPR 18.8%), vitamin C deficiency was identified more frequently in rural settlements (CPR 5.9%). DISCUSSION: The Poundbury Camp data on morbidity and mortality are not representative of patterns in Roman England and other major urban sites. Rural children suffered from a distinct set of pathologies described as diseases of deprivation, prompting reconsideration of how Romano-British land management affected those at the bottom of the social hierarchy.

On the threshold of adulthood: A new approach for the use of maturation indicators to assess puberty in adolescents from medieval England.

OBJECTIVES: This study provides the first large scale analysis of the age at which adolescents in medieval England entered and completed the pubertal growth spurt. This new method has implications for expanding our knowledge of adolescent maturation across different time periods and regions. METHODS: In total, 994 adolescent skeletons (10-25 years) from four urban sites in medieval England (AD 900-1550) were analyzed for evidence of pubertal stage using new osteological techniques developed from the clinical literature (i.e., hamate hook development, cervical vertebral maturation (CVM), canine mineralization, iliac crest ossification, and radial fusion). RESULTS: Adolescents began puberty at a similar age to modern children at around 10-12 years, but the onset of menarche in girls was delayed by up to 3 years, occurring around 15 for most in the study sample and 17 years for females living in London. Modern European males usually complete their maturation by 16-18 years; medieval males took longer with the deceleration stage of the growth spurt extending as late as 21 years. CONCLUSIONS: This research provides the first attempt to directly assess the age of pubertal development in adolescents during the 10th-17th centuries. Poor diet, infections, and physical exertion may have contributed to delayed development in the medieval adolescents, particularly for those living in the city of London. This study sheds new light on the nature of adolescence in the medieval period, highlighting an extended period of physical and social transition.

Skin conductance at baseline and postheel lance reflects sympathetic activation in neonatal opiate withdrawal.

AIM: Skin conductance (SC) provides an objective measure of autonomic system regulation through sympathetic-mediated filling of sweat glands. This study aimed to test the utility of SC to detect sympathetic activation in neonatal abstinence syndrome (NAS). METHODS: Fourteen term (mean, SE: 38.8 ± 0.35 weeks gestational age) neonates with chronic prenatal opiate exposure were enrolled. SC (peaks/seconds and mean of peaks) was measured at baseline, during heel lance/squeeze (HLS) and recovery from HLS at 24-48 (mean 38) hours of life prior to treatment for NAS. Blinded coders with established reliability assessed neonates using the Modified Finnegan Neonatal Scoring System (MFNSS). Nonparametric tests were used to determine group differences, phase differences from baseline to HLS and HLS to recovery, and associations between MFNSS and SC measures. RESULTS: Neonates that would later require morphine treatment for NAS (n = 6) had higher baseline SC mean of peaks than those that did not require treatment (n = 8) (p < 0.05). Moreover, there were unique phase differences between groups and SC positively correlated with MFNSS (p < 0.05). CONCLUSION: SC provides early identification of NAS severity. However, a larger sample is needed to determine sensitivity and specificity of SC for early identification of NAS and treatment effectiveness.

Childhood trauma: Methods for the identification of physeal fractures in nonadult skeletal remains.

OBJECTIVES: Today, fractures at the growth plate (or physis) are common injuries in children, but provide challenges of identification in skeletonized remains. Clinical studies provide detailed information on the mechanisms, locations, age of occurrence, and complications associated with physeal fractures, enabling the development of new criteria for identifying this injury in nonadults. To test these criteria, skeletal remains from five rural and urban medieval cemeteries were examined. METHODS: The sample consisted of 961 skeletons (0-17 years) with open epiphyses. Macroscopic observation looked for any irregularities of the metaphysis or epiphysis, which was consistent with the clinical appearance of physeal fractures or resulting complications. Radiographic examination was applied to identify fracture lines or early growth arrest. RESULTS: This study revealed 12 cases of physeal trauma (1.2%). Physeal fractures occurred predominantly at the distal end (75%), and while they were identified in all age categories, they were most frequent in those aged 12-17 years (0.2% TPR). The humerus was the most commonly affected location (3/12 or 25%). CONCLUSIONS: This study highlights the potential for recognizing physeal fractures in children of all ages, enhancing our understanding of nonadult trauma, and enabling us to assign a more precise age of the injury to build up a picture of their activities in the past.

Brief communication: a proposed method for the assessment of pubertal stage in human skeletal remains using cervical vertebrae maturation.

The assessment of age-at-death in non-adult skeletal remains is under constant review. However, in many past societies an individual's physical maturation may have been more important in social terms than their exact age, particularly during the period of adolescence. In a recent article (Shapland and Lewis: Am J Phys Anthropol 151 (2013) 302-310) highlighted a set of dental and skeletal indicators that may be useful in mapping the progress of the pubertal growth spurt. This article presents a further skeletal indicator of adolescent development commonly used by modern clinicians: cervical vertebrae maturation (CVM). This method is applied to a collection of 594 adolescents from the medieval cemetery of St. Mary Spital, London. Analysis reveals a potential delay in ages of attainment of the later CVM stages compared with modern adolescents, presumably reflecting negative environmental conditions for growth and development. The data gathered on CVM is compared to other skeletal indicators of pubertal maturity and long bone growth from this site to ascertain the usefulness of this method on archaeological collections.

Role of sonography in the differentiation of benign, high-risk, and malignant papillary lesions of the breast.

OBJECTIVES: The purpose of this retrospective study was to assess the sonographic features of benign, high-risk, and malignant papillary lesions of the breast. METHODS: We conducted a search of our institution's breast biopsy database for all papillary lesions with sonographic findings and final surgical pathologic diagnoses from January 1, 2004, to December 31, 2009. We retrospectively reviewed the breast sonographic findings of 23 benign papillomas, 14 papillomas with associated atypical ductal hyperplasia, and 14 papillary carcinomas, all surgically proven. These 51 lesions in 50 patients comprised our data set. The imaging reports, pathologic records, and surgical records of these patients were reviewed, and statistical analysis was performed. RESULTS: The findings for 50 patients (age range, 26-92 years; mean, 55.2 years) with 51 lesions were reviewed. One patient had bilateral breast cancer. Size and margin features showed statistically significant differences (P < .05) between the lesions. Twelve (47.9%) benign papillomas, 10 (71.4%) high-risk lesions, and 13 (92.9%) malignant lesions were larger than 1 cm. Sixteen (69.6%) benign papillomas, 10 (71.4%) high-risk lesions, and only 4 (28.6%) malignant lesions had circumscribed margins. With regard to echo pattern, there was a statistically significant difference between the lesions (P< .01). Twenty (87.0%) benign papillomas, 4 (28.6%) high-risk lesions, and 10 (71.4%) malignant lesions were hypoechoic. Posterior sonographic features were also statistically significant (P < .05), with malignant and high-risk lesions being associated with posterior enhancement or shadowing. Another statistically significant difference (P < .01) was intralesional vascularity, which was seen more frequently with malignant lesions. Regardless of lesion type, the distance from the nipple, shape, orientation, surrounding tissue change, and associated calcifications were not significant. CONCLUSIONS: Our results suggest that sonographic features that may potentially assist in differentiating papillary lesions include size, margin, echo pattern, posterior features, and intralesional vascularity.

A comprehensive newborn exam: part I. General, head and neck, cardiopulmonary.

A comprehensive newborn examination involves a systematic inspection. A Ballard score uses physical and neurologic characteristics to assess gestational age. Craniosynostosis is caused by premature fusion of the sutures, and 20% of children with this condition have a genetic mutation or syndrome. The red reflex assessment is normal if there is symmetry in both eyes, without opacities, white spots, or dark spots. If the red reflex findings are abnormal or the patient has a family history of pertinent eye disorders, consultation with an ophthalmologist is warranted. Newborns with low-set ears should be evaluated for a genetic condition. Renal ultrasonography should be performed only in patients with isolated ear anomalies, such as preauricular pits or cup ears, if they are accompanied by other malformations or significant family history. If ankyloglossia is detected, a frenotomy may be considered if it impacts breastfeeding. The neck should be examined for full range of motion because uncorrected torticollis can lead to plagiocephaly and ear misalignment. Proper auscultation is crucial for evaluation of the bronchopulmonary circulation with close observation for signs of respiratory distress, including tachypnea, nasal flaring, grunting, retractions, and cyanosis. Benign murmurs are often present in the first hours of life. Pulse oximetry should be performed in a systematic fashion before discharge.

A comprehensive newborn exam: part II. Skin, trunk, extremities, neurologic.

Skin findings are common during the newborn examination. Although these findings are often benign, it is important to visualize the entire skin surface to distinguish these findings and appropriately reassure parents. The chest should be observed for symmetric movement, pectus excavatum, pectus carinatum, prominent xiphoid, or breast tissue. The infant should be as relaxed as possible so that the physician can more easily detect any abdominal masses, which are often renal in origin. A single umbilical artery may be associated with another congenital abnormality, especially renal anomalies, and intrauterine growth restriction and prematurity. Signs of ambiguous genitalia include clitoromegaly and fused labia in girls, and bilateral undescended testes, a micropenis, or a bifid scrotum in boys. Sacral dimples do not warrant further evaluation if they are less than 0.5 cm in diameter, are located within 2.5 cm of the anal verge, and are not associated with cutaneous markers; dimples that do not fit these criteria require ultrasonography to evaluate for spinal dysraphism. Brachial plexus injuries are most common in newborns who are large for gestational age, and physical therapy may be required to achieve normal function. Patients with abnormal findings on Ortolani and Barlow maneuvers should be evaluated further for hip dysplasia. It is also important to assess newborns for tone and confirm the presence of normal primitive reflexes.

Realistic nurse-led policy implementation, optimization and evaluation: novel methodological exemplar.

AIM: To report the first large-scale realistic nurse-led implementation, optimization and evaluation of a complex children's continuing-care policy. BACKGROUND: Health policies are increasingly complex, involve multiple Government departments and frequently fail to translate into better patient outcomes. Realist methods have not yet been adapted for policy implementation. DESIGN: Research methodology - Evaluation using theory-based realist methods for policy implementation. METHODS: An expert group developed the policy and supporting tools. Implementation and evaluation design integrated diffusion of innovation theory with multiple case study and adapted realist principles. Practitioners in 12 English sites worked with Consultant Nurse implementers to manipulate the programme theory and logic of new decision-support tools and care pathway to optimize local implementation. Methods included key-stakeholder interviews, developing practical diffusion of innovation processes using key-opinion leaders and active facilitation strategies and a mini-community of practice. New and existing processes and outcomes were compared for 137 children during 2007-2008. RESULTS: Realist principles were successfully adapted to a shorter policy implementation and evaluation time frame. Important new implementation success factors included facilitated implementation that enabled 'real-time' manipulation of programme logic and local context to best-fit evolving theories of what worked; using local experiential opinion to change supporting tools to more realistically align with local context and what worked; and having sufficient existing local infrastructure to support implementation. Ten mechanisms explained implementation success and differences in outcomes between new and existing processes. CONCLUSIONS: Realistic policy implementation methods have advantages over top-down approaches, especially where clinical expertise is low and unlikely to diffuse innovations 'naturally' without facilitated implementation and local optimization.

The association of health literacy, social support, self-efficacy and interpersonal interactions with health care providers in low-income Latina mothers.

OBJECTIVE: We explored relationships between maternal health literacy (HL), communicative self-efficacy (SE), social support (SS) and maternal perception of interactions with health care providers (HCPs). METHODS: Using a cross-sectional, correlational design, we assessed sociodemographic characteristics, maternal HL, social support, communicative self-efficacy, and interpersonal interactions with HCPs among 124 low-income Latina mothers of young children. RESULTS: Informal SS significantly predicted maternal SE in interactions. SE predicted maternal perception of a HCP's ability to "elicit and respond to her concerns." DISCUSSION: Interventions to improve maternal self-efficacy in interacting with HCPs among low health literate Latina mothers may positively impact pediatric health outcomes.

Biopsychosocial predictors of psychological functioning among African American breast cancer survivors.

This study examined the relationships of biological and psychosocial predictors as contributing factors to the psychological functioning among breast cancer survivors. A sample of (N = 155) African American breast cancer survivors were recruited from California. A general linear model was utilized to examine the relationships. Biological and psychosocial risk factors were significant predictors for anxiety and depression. These predictors can be viewed as contributing factors to the psychological well-being of this cohort. Anxiety and depression are often under-recognized and subsequently undertreated in survivors. Understanding the predictors of depression and anxiety is necessary for incorporating a multidisciplinary approach to address this problem.

The 2021 Chronic Kidney Disease Epidemiology Collaboration Race-Free Estimated Glomerular Filtration Rate Equations in Kidney Disease: Leading the Way in Ending Disparities.

Purpose: In 2020, the National Kidney Foundation (NKF) and the American Society of Nephrology (ASN) convened a Task Force to recommend an evidence-based race-free approach to estimated glomerular filtration rate (eGFR). After the rigorous review of more than 20 approaches, the NKF/ASN Task Force published the final report that recommended the implementation of the Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI 2021) equation for eGFR using creatine and expanded utilization of cystatin C testing. The purpose of this manuscript is to provide a comprehensive overview of the evolution of eGFR equations, and an overview of the Task Force deliberations and recommendations. For over two decades, the equation recommended to calculate eGFR included a race coefficient to adjust for data that suggested that American adults with African ancestry had consistently higher serum creatinine levels. Methods: We will provide a discussion illustrating why the 2021 CKD EPI equations are the most equitable solution to eGFR. We will also provide an overview of the current implementation status and best practices for the new equations. Lastly, we will discuss how deployment of the new equations is an important step toward eliminating significant disparities in CKD care which disproportionately affect communities of color. Results: Removing race from the algorithm used to assess kidney function is most equitable. Since race is a social construct, its use in clinical algorithms has facilitated health disparities in Black/African American people, Hispanic/Latino people, and other racial and ethnic minority groups-those who are already disproportionately impacted by diabetes, hypertension, and kidney disease. In turn, these same individuals experience significant inequities in kidney health care including reduced access to nephrology care, home dialysis, and kidney transplant. Conclusions: Adoption of the race-free 2021 CKD-EPI eGFR equations will have life changing implications for kidney health. It will aid in appropriate referral, identification, diagnosis, treatment, and management of kidney disease and transplantation services/options. The outcomes of widespread implementation of the new equations coupled with system change quality improvement interventions such as the kidney profile will lead to more equitable outcomes and begin to address the crippling disparities in early, appropriate testing for CKD.

Brief communication: a proposed osteological method for the estimation of pubertal stage in human skeletal remains.

Puberty forms an important threshold between childhood and adulthood, but this subject has received little attention in bioarchaeology. The new application of clinical methods to assess pubertal stage in adolescent skeletal remains is explored, concentrating on the development of the mandibular canine, hamate, hand phalanges, iliac crest and distal radius. Initial results from the medieval cemetery of St. Peter's Church, Barton-upon-Humber, England suggest that application of these methods may provide insights into aspects of adolescent development. This analysis indicates that adolescents from this medieval site were entering the pubertal growth spurt at a similar age to their modern counterparts, but that the later stages of pubertal maturation were being significantly delayed, perhaps due to environmental stress. Continued testing and refinement of these methods on living adolescents is still necessary to improve our understanding of their significance and accuracy in predicting pubertal stages.

Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of 'My Choices'.

BACKGROUND: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. METHODS: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. RESULTS: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. CONCLUSION: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.