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Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital. Objective: To develop C-POS:UK (Children's Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties. Design: Sequential mixed-methods approach to PCOM development, guided by Rothrock's measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. Methods: (i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation. Results: (i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child's developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child's developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing. Conclusion: A sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning. [ABSTRACT FROM AUTHOR]

Background: Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit. Aim: Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals. Design: Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework. Data sources: CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included. Results: One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions (n = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated. Conclusion: Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Children, young people and their families come into contact with a large number of health and social care professionals within hospital, education and community settings following a cancer diagnosis. The multiprofessional team best supports these families through an open and communicative approach to care. The side effects of cancer treatment include fever, infection, gastrointestinal upset, altered body image and psychological impact on children, young people and their families. Debate continues as to how children, young people, their siblings and parents cope with childhood cancer and its treatment due to its impact on family quality of life. It is considered that the short- and long-term wellbeing of children, young people and their families during treatment is best supported by continuing routine daily activities, such as attending nursery, school or college. [ABSTRACT FROM AUTHOR]

Objectives: To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes., Design: Mixed-methods systematic review. We searched PsycINFO, MEDLINE, CINAHL, and ASSIA from databases and included studies reporting experiences and/or impact of PCOM use among people with dementia, family carers, and/or practitioners. Groen Van de Ven's model of collaborative deliberation informed the elements of shared decision-making in dementia care in the abstraction, analysis, and interpretation of data. Data were narratively synthesized to develop the logic model., Setting: Studies were conducted in long-term care, mixed settings, emergency department, general primary care, and geriatric clinics., Participants: A total of 1064 participants were included in the review., Results: Ten studies were included. PCOMs can facilitate shared decision-making through "knowing the person," "identifying problems, priorities for care and treatment and goal setting," "evaluating decisions", and "implementation considerations for PCOM use." Weak evidence on the impact of PCOMs to improve communication between individuals and practitioners, physical function, and activities of daily living., Conclusions: PCOMs can enable shared decision-making and impact outcomes through facilitating collaborative working between the person's network of family and practitioners to identify and manage symptoms and concerns. The constructed logic model demonstrates the key mechanisms to discuss priorities for care and treatment, and to evaluate decisions and outcomes. A future area of research is training for family carers to use PCOMs with practitioners., Competing Interests: None declared. Author disclosures are available in the Supporting Information., (© 2022 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.)

Background: More than 90% of patients with diffuse intrinsic pontine glioma (DIPG) will die within 2 years of diagnosis. Patients deteriorate rapidly during the disease course, which severely impairs their quality of life. To date, no specific research on this clinically important subject has been conducted. This study aimed to compile an inventory of symptoms experienced, interventions applied, and current service provision in end-of-life care for DIPG., Methods: We performed a retrospective cohort study of children with DIPG, aged 0-18 years, who received treatment under the care of 2 London hospitals. Symptoms, interventions, and services applied during the 12 weeks before death were analyzed. In addition, we conducted a global questionnaire-study among health care professionals., Results: In more than 78% of DIPG patients, problems concerning mobility, swallowing, communication, consciousness, and breathing arose during end-stage disease. Supportive drugs were widely prescribed. The use of medical aids was only documented in <15% of patients. Palliative and end-of-life care was mostly based on the health care professional's experience; only 21% of the questionnaire respondents reported to have a disease-specific palliative care guideline available., Conclusions: This research assessed the current state of palliative and end-of-life care for children with DIPG. Our results show the variability and complexity of symptoms at end-stage disease and the current lack of disease-specific guidelines for this vulnerable group of patients. This first descriptive paper is intended to act as a solid basis for developing an international clinical trial and subsequent guideline to support high-quality palliative and end-of-life care., (© The Author(s) 2015. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)