Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. SETTING/PARTICIPANTS: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. RESULTS: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. CONCLUSIONS: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

A systematic review of epidemiologic studies on scabies in the Philippines

Background and Objective@#Scabies is the second most common cause of disability due to skin disease in the Philippines. However, there were no cited studies in Global Burden of Disease 2019 and the disability-adjusted life years (DALY) computations were most likely based on statistical modelling. The Philippine Department of Health has embarked on a program to estimate the disease burden of priority diseases in the country, which include scabies. The last nationwide prevalence survey was 23 years ago. This systematic review aimed to estimate the prevalence or incidence of scabies in the Philippines. @*Methods@#We searched PubMed, Scopus, Herdin, and Philippine Health Research Registry (search date October 2022) for studies on prevalence/incidence (including systematic reviews, cross-sectional studies, cohort studies, case series, registry or census studies) of patients diagnosed with scabies in the Philippines. We excluded narrative reviews, commentaries, and conference proceedings or abstracts. Two reviewers independently screened titles and abstracts, assessed full text reports for eligibility, appraised the quality of included studies, and collected data using a pretested data extraction form. We did not pool studies due to clinical heterogeneity but plotted the individual studies in a forest plot with prevalence estimates and confidence intervals. We reported the median and interquartile range for entire group or relevant subgroups (age, setting) of studies. We used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach to assess the certainty of evidence.@*Results@#We included nine studies (N=79,065). Most were clinic-based prevalence studies, retrospective chart reviews, conducted in dermatology outpatient clinics, Metro Manila area, and on pediatric populations. Prevalence of scabies was moderate (i.e., between 2 and 10%), ranging from 2.75% (national prevalence survey) to 6.8% (communitybased review), to high (> 10%) among pediatric patients in clinic-based retrospective chart reviews (29 to 36%) and institution-based surveys (39.0% to 45%), and a tertiary government university training hospital dermatology clinic (22.9%). The most affected age group was from 0 to 14 y/o, while males tended to have a higher prevalence than females. The cooler month of January had higher prevalence than the hotter month of June in one study. @*Conclusion@#Scabies is common in the Philippines, especially among children and elderly in institutional settings, and during the month of January. There is a need to do a national prevalence survey to identify high-risk areas and to monitor the prevalence of scabies, especially in crowded settings and vulnerable populations. This information can be used for estimating the burden of disease for scabies and guide appropriate health resource allocation.

Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.

BACKGROUND: There is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. AIM: To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity. DESIGN: This study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person's advisory group was also consulted on priority outcomes. SETTING AND PARTICIPANTS: Delphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person's advisory group: young people age 10-20 years. Item generation meeting: bereaved parents, academics and clinicians. RESULTS: Phase 1: Delphi survey (n = 82). Agreement increased from Kendall's W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen's kappa 0.13). Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns. Advisory group: Children (n = 22) prioritised items related to living a 'normal life' in addition to items prioritised by adult participants. Phase 2: Five age/developmental stage appropriate child and proxy-reported versions of C-POS, containing 13 items, were drafted. CONCLUSIONS: This study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.

Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review.

BACKGROUND: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children's services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice. METHODS: The review was conducted and reported in accordance with PRISMA guidelines. Databased searched included CINAHL, Embase, Medline, and PsycInfo. Google scholar was also searched for grey literature on 25th March 2022. Studies were included if the setting was a children's healthcare service, investigating the implementation or use of an outcome measure or screening tool in healthcare practice, and reported outcomes relating to use of a measure. Data were tabulated and thematically analysed through deductive coding to the constructs of the adapted-Consolidated Framework for Implementation Research (CFIR). Results were presented as a narrative synthesis, and a logic model developed. RESULTS: We retained 69 studies, conducted across primary (n = 14), secondary (n = 13), tertiary (n = 37), and community (n = 8) healthcare settings, including both child self-report (n = 46) and parent-proxy (n = 47) measures. The most frequently reported barriers to measure implementation included staff lack of knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources to support implementation and its continued use including funding and staff. The most frequently reported facilitators of implementation and continued use include educating and training staff and families on: how to implement and use the measure; the advantages of using PCOMs over current practice; and the benefit their use has on patient care and outcomes. The resulting logic model presents the mechanisms through which strategies can reduce the barriers to implementation and support the use of PCOMs in practice. CONCLUSIONS: These findings can be used to support the development of context-specific implementation plans through a combination of existing strategies. This will enable the implementation of PCOMs into routine paediatric healthcare practice to empower settings to better identify and improve child-centred outcomes. TRIAL REGISTRATION: Prospero CRD 42022330013.

Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

BACKGROUND: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. AIM: To identify the spiritual needs of children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis. SETTING/PARTICIPANTS: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. RESULTS: One hundred six participants were interviewed: 26 children (5-17 years), 53 family members (parents/carers of children 0-17 years and siblings (5-17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. CONCLUSIONS: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.

Transcatheter Aortic Valve Replacement-Associated Acute Kidney Injury: An Update.

BACKGROUND: Transcatheter aortic valve replacement (TAVR) is a relatively novel minimally invasive procedure for the treatment of symptomatic patients with severe aortic stenosis. Although it has been proven effective in improving mortality and quality of life, TAVR is associated with serious complications, such as acute kidney injury (AKI). SUMMARY: TAVR-associated AKI is likely due to several factors such as sustained hypotension, transapical approach, volume of contrast use, and baseline low GFR. This narrative review aims to present an overview of the latest literature and evidence regarding the definition of TAVR-associated AKI, its risk factors, and its impact on morbidity and mortality. The review used a systematic search strategy with multiple health-focused databases (Medline, EMBASE) and identified 8 clinical trials and 27 observational studies concerning TAVR-associated AKI. Results showed that TAVR-associated AKI is linked to several modifiable and nonmodifiable risk factors and is associated with higher mortality. A variety of diagnostic imaging modalities have the potential to identify patients at high risk for development of TAVR-AKI; however, there are no existing consensus recommendations regarding their use as of this time. The implications of these findings highlight the importance of identifying high-risk patients for which preventive measures may play a crucial role, and should be maximized. KEY MESSAGE: This study reviews the current understanding of TAVR-associated AKI including its pathophysiology, risk factors, diagnostic modalities, and preventative management for patients.

COVID-19: Impact on Pediatric Palliative Care.

CONTEXT: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. OBJECTIVES: To explore the impact of the COVID-19 pandemic and lockdowns on this population. METHODS: Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners. RESULTS: COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. CONCLUSION: Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays.

A Single Drop of Fingerstick Blood for Quantitative Antibody Response Evaluation After SARS-CoV-2 Vaccination

Among several COVID vaccines that have been approved, the Moderna and Pfizer-BioNTech vaccines are mRNA vaccines that are safe and highly effective at preventing COVID-19 illness. Studies have demonstrated that neutralizing antibody responses elicited by these vaccines correlate strongly with antibodies measured by immunoassays such as ELISA. To monitor the antibody level duration of vaccine-induced immune responses in vaccinated population, cost-effective and easily implementable antibody testing methodologies are urgently needed. In this study, we evaluated the feasibility of using a single drop of fingerstick blood collected with flocked swabs for a high-throughput and quantitative anti-SARS-CoV-2 spike (S1) IgG antibody immunoassay. A total of 50 voluntary subjects participated and donated fingerstick blood samples before and after receiving the Moderna mRNA vaccine. Among all individuals tested, no anti-SARS-CoV-2 S1 IgG antibody was detected before vaccination and on day 7 after receiving the first vaccine dose. On day 14 after the first dose, a significant amount of anti-SARS-CoV-2 S1 IgG antibody was detected in all participants samples. By the end the third week from the first dose, the median anti-SARS-CoV-2 S1 IgG concentration increased to 44.9 ug/mL. No anti-SARS-CoV-2 nucleocapsid (N) protein IgG antibody was detected in any of the participants during the study period, indicating that the anti-SARS-CoV-2 S1 IgG assay is specific for the mRNA vaccine induced antibodies.Comaprison of venous blood plasma and fingerstick blood for anti-SARS-CoV-2 S1 IgG shown a higher correlation. Furthermore, the fingerstick blood dried swab samples are stable for at least 4 days. In summary, we demonstrated that a single drop of fingerstick blood collected with flocked swab can be used for quantitative detection and monitoring of anti-SARS-CoV-2 spike IgG responses after receiving COVID-19 vaccination. This testing platform does not require venous blood draw and can be easily implemented for large scale antibody testing in vaccinated populations.

The influence of front-of-pack nutrition information on consumers' portion size perceptions.

Issue addressed Portion size guidance strategies have been suggested as an important component of weight management; therefore, the Health Star Rating (HSR) front-of-pack labels could influence consumers' portion-size decisions. However, this has not been investigated to date. This study aims to evaluate whether presenting energy content information and HSRs influences portion size self-selection of specific foods and meals. Methods Adults were randomly assigned to one of three experimental groups in this randomised controlled experiment. Each participant was given either a kJ/100g food label or a HSR label, or was given no information on nutrient composition. They were then asked to serve themselves an adequate portion of breakfast cereal (Kellogg's Nutri-Grain), fruit salad and chocolate, plus a three-component meal (chicken, fries and mixed vegetables). Portion serves and meal weights were compared between each experimental group using ANOVA and the discretionary foods were also compared with the Australian Guide to Healthy Eating (AGHE). Results Neither the kilojoule nor HSR information influenced the self-served portion size of foods or meal components. Mean self-served portion size of the discretionary foods were significantly greater than the standard serving sizes as specified in the AGHE. Conclusion Although food labels have the potential to assist consumers in making product choices, this study indicates that presenting nutrition information does not affect portion size decisions in young adults. So what? Strategies that assist consumers to choose appropriate portion sizes should be developed as a weight management tool.

Should we involve terminally ill patients in teaching medical students? A systematic review of patient's views.

OBJECTIVE: To review available published research that has explored how terminally ill patients feel about being involved in undergraduate medical teaching. METHODS: A systematic review using narrative synthesis. Qualitative or quantitative publications were included if they directly explored the views of adult patients, with a terminal diagnosis, about their involvement in undergraduate clinical teaching. RESULTS: Seven publications met the inclusion criteria: one case report, one qualitative study and five questionnaire-based studies. A total of 269 patients were included across all studies. Patients were predominantly studied in a hospice or hospice day care setting. Both patients who had, and who had not, previously been involved in student teaching were captured by the included publications. In general, the views of patients were highly positive: overall 85%-100% were in favour of involvement in teaching. There were also some negative aspects, such as: concerns about being physically examined by a student; finding involvement in teaching tiring; feeling unable to decline consent to participate. CONCLUSIONS: An assumption that clinical undergraduate medical teaching involving terminally ill patients may be too burdensome is not reflected overall in studies that have sought the views of the patients themselves. Understanding the patient's perspective provides a number of practical points in relation to how clinical teaching should be adapted in this patient group; for example, using smaller student group sizes; direct supervision if physical examination performed; short encounters with multiple patients rather than a longer encounter with one patient; adequate informed consent beforehand and without the students automatically being present.

Stroop interference in adults with dyslexia.

Prior research on developmental dyslexia using Stroop tasks with young participants has found increased interference in participants with dyslexia relative to controls. Here we extend these findings to adult participants, and introduce a novel test of Stroop incongruity, whereby the color names appeared on an object colored in the incongruent color. The results imply that impaired inhibitory and executive attentional mechanisms are still deficient in adults with dyslexia and that other forms of attentional mechanisms, such as object-based attention, might also be impaired in dyslexia. Dyslexia arises not only from deficits in phonological processing, but from attentional mechanisms as well.