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

Neuropalliative rehabilitation - managing neurological disability in the context of a deteriorating illness

Although the concepts of ‘rehabilitation’ and ‘palliative care’ may seem paradoxical, the two approaches have a great deal in common. Rehabilitation for people with deteriorating, life-limiting neurological conditions can be organized into four distinct but overlapping categories: preventative, restorative, supportive, and palliative.Patients with neurological conditions can report palliative care needs from diagnosis; neuropalliative rehabilitation needs to be available within the context of whatever services are most appropriate for the patient’s circumstances at the time, requiring excellent coordination of care between neurology, palliative care, and rehabilitation services. Neuropalliative rehabilitation follows the same process that would be used in other conditions, but is underpinned by specific palliative care skills which include the ability to work flexibly with rapidly changing conditions, as well as understanding and being able to manage the tension between the patient’s active engagement in life and acknowledging loss and death

Early engagement in physical activity and exercise is key in managing cancer cachexia

Despite consensus on the diagnosis and staging of cancer anorexia/cachexia syndrome, there is currently no accepted standard of care, and affected patients remain widely undertreated. There is general agreement that, because of the complex pathophysiology involved, management should be multimodal and offered earlier in the course of anticancer treatment.[1] However, clarification is needed regarding how to deliver the appropriate anticachexia and antianorexia therapies. In this issue of ONCOLOGY, Dev et al provide an important step forward, offering a model for the multimodal management of cachexia that includes core treatments, as well as evidence-based and investigational approaches, and that details how these target different aspects of the syndrome.[2] Acknowledging the limited data available on some of the treatments discussed, the authors also provide valuable clinical practice points to guide the delivery of cancer care. We wish to draw further attention to the role of physical activity and exercise, which they propose as core treatments