A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance.

INTRODUCTION: Patient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition that PPI is the right thing to do for both moral and practical reasons. The aim of this review of reviews is to examine how PPI can be done 'properly' by looking at the evidence that exists from published reviews and assessing it against the UK Standards for Public Involvement in Research, as well as examining the specific features of population health research that can make PPI more challenging. METHODS: A review of reviews and development of best practice guidance was carried out following the 5-stage Framework Synthesis method. RESULTS: In total 31 reviews were included. There is a lack of current research or clarity around Governance and Impact when findings are mapped against UK Standards for Public Involvement in Research. It was also clear that there is little knowledge around PPI with under-represented groups. There are gaps in knowledge about how to ensure key specific attributes of population health research are addressed for PPI team members - particularly around how to deal with complexity and the data-driven nature of the research. Four tools were produced for researchers and PPI members to further improve their PPI activity within population health research and health research more generally, including a framework of recommended actions to address PPI in population health research, and guidance on integrating PPI based on the UK Standards for Public Involvement in Research. CONCLUSIONS: Facilitating PPI in population health research is challenging due to the nature of this type of research and there is far less evidence on how to do PPI well in this context. The tools can help researchers identify key aspects of PPI that can be integrated when designing PPI within projects. Findings also highlight specific areas where more research or discussion is needed.

The Exeter Activity Unlimited statement on physical activity and exercise for cystic fibrosis: methodology and results of an international, multidisciplinary, evidence-driven expert consensus.

BACKGROUND: The roles of physical activity (PA) and exercise within the management of cystic fibrosis (CF) are recognised by their inclusion in numerous standards of care and treatment guidelines. However, information is brief, and both PA and exercise as multi-faceted behaviours require extensive stakeholder input when developing and promoting such guidelines. METHOD: On 30th June and 1st July 2021, 39 stakeholders from 11 countries, including researchers, healthcare professionals and patients participated in a virtual conference to agree an evidence-based and informed expert consensus about PA and exercise for people with CF. This consensus presents the agreement across six themes: (i) patient and system centred outcomes, (ii) health benefits, iii) measurement, (iv) prescription, (v) clinical considerations, and (vi) future directions. The consensus was achieved by a stepwise process, involving: (i) written evidence-based synopses; (ii) peer critique of synopses; (iii) oral presentation to consensus group and peer challenge of revised synopses; and (iv) anonymous voting on final proposed synopses for adoption to the consensus statement. RESULTS: The final consensus document includes 24 statements which surpassed the consensus threshold (>80% agreement) out of 30 proposed statements. CONCLUSION: This consensus can be used to support health promotion by relevant stakeholders for people with CF.

Sleep, Sedentary Time and Physical Activity Levels in Children with Cystic Fibrosis.

The aim of this study was to compare the use of generic and cystic fibrosis (CF)-specific cut-points to assess movement behaviours in children and adolescents with CF. Physical activity (PA) was assessed for seven consecutive days using a non-dominant wrist-worn ActiGraph GT9X in 71 children and adolescents (36 girls; 13.5 ± 2.9 years) with mild CF. CF-specific and generic Euclidean norm minus one (ENMO) cut-points were used to determine sedentary time (SED), sleep, light physical activity (LPA), moderate physical activity and vigorous physical activity. The effect of using a CF-specific or generic cut-point on the relationship between PA intensities and lung function was determined. Movement behaviours differed significantly according to the cut-point used, with the CF-specific cut-points resulting in less time asleep (−31.4 min; p < 0.01) and in LPA (−195.1 min; p < 0.001), and more SED and moderate-to-vigorous PA (159.3 and 67.1 min, respectively; both p < 0.0001) than the generic thresholds. Lung function was significantly associated with LPA according to the CF-specific cut-points (r = 0.52; p = 0.04). Thresholds developed for healthy populations misclassified PA levels, sleep and SED in children and adolescents with CF. This discrepancy affected the relationship between lung function and PA, which was only apparent when using the CF-specific cut-points. Promoting LPA seems a promising strategy to enhance lung function in children and adolescents with CF.

A Compositional Analysis of Physical Activity, Sedentary Time, and Sleep and Associated Health Outcomes in Children and Adults with Cystic Fibrosis.

This study sought to investigate the association of light physical activity (LPA), moderate-to-vigorous physical activity (MVPA), sedentary time (SED), and sleep with lung function in children and adults with CF. In total, 86 children (41 females; 13.6 ± 2.8 years; FEV1%predicted: 86 ± 1%) and 43 adults (21 females; 24.6 ± 4.7 years; FEV1%predicted: 63 ± 21%) with CF participated in this study. Wrist-worn accelerometery was used to assess PA, SED and sleep. Compositional linear regression models were conducted following normalisation via isometric log-ratio transformations. Sequential binary partitioning was applied to investigate the impact of reallocating 10 to 30 min between each behaviour on FEV1%predicted. A decline in FEV1%predicted was predicted with the reallocation of 30 min from MVPA to SED or LPA or sleep to any other behaviour in children (-3.04--0.005%) and adults (-3.58--0.005%). Conversely, improvements in FEV1%predicted were predicted when 30 min was reallocated to MVPA from LPA or SED in children (0.12-1.59%) and adults (0.77-2.10%), or when 30 min was reallocated to sleep from any other behaviour in both children (0.23-2.56%) and adults (1.08-3.58%). This study supports the importance of MVPA and sleep for maintaining and promoting lung function in people with CF.

Calibration and validation of accelerometry using cut-points to assess physical activity in paediatric clinical groups: A systematic review.

Regular physical activity is associated with physiological and psychosocial benefits in both healthy and clinical populations. However, little is known about tailoring the analysis of physical activity using accelerometers to the specific characteristics of chronic conditions. Whilst accelerometry is broadly used to assess physical activity, recommendations on calibration in paediatric clinical groups are warranted. The aim of this systematic review was to provide a critical overview of protocols used to calibrate accelerometry in children and adolescents with clinical conditions, as well as to develop recommendations for calibration and validation of accelerometry in such populations. The search was performed between March to July 2017 using text words and subject headings in six databases. Studies had to develop moderate-to-vigorous intensity physical activity (MVPA) cut-points for paediatric clinical populations to be included. Risk of bias was assessed using a specific checklist. A total of 540,630 titles were identified, with 323 full-text articles assessed. Five studies involving 347 participants aged 9 to 15 years were included. Twenty-four MVPA cut-points were reported across seven clinical conditions, 16 of which were developed for different models of ActiGraph, seven for Actical and one for Tritrac-R3D. Statistical approaches included mixed regression, machine learning and receiver operating characteristic analyses. Disease-specific MVPA cut-points ranged from 152 to 735 counts·15 s-1, with lower cut-points found for inherited muscle disease and higher cut-points associated with intellectual disabilities. The lower MVPA cut-points for diseases characterised by both ambulatory and metabolic impairments likely reflect the higher energetic demands associated with those conditions.

Calibration and validation of accelerometry to measure physical activity in adult clinical groups: A systematic review.

A growing body of research calibrating and validating accelerometers to classify physical activity intensities has led to a range of cut-points. However, the applicability of current calibration protocols to clinical populations remains to be addressed. The aim of this review was to evaluate the accuracy of the methods for calibrating and validating of accelerometers to estimate physical activity intensity thresholds for clinical populations. Six databases were searched between March and July to 2017 using text words and subject headings. Studies developing moderate-to-vigorous intensity physical activity cut-points for adult clinical populations were included. The risk of bias was assessed using the health measurement instruments and a specific checklist for calibration studies. A total of 543,741 titles were found and 323 articles were selected for full-text assessment, with 11 meeting the inclusion criteria. Twenty-three different methods for calibration were identified using different models of ActiGraph and Actical accelerometers. Disease-specific cut-points ranged from 591 to 2717 counts·min-1 and were identified for two main groups of clinical conditions: neuromusculoskeletal disorders and metabolic diseases. The heterogeneity in the available clinical protocols hinders the applicability and comparison of the developed cut-points. As such, a mixed protocol containing a controlled laboratory exercise test and activities of daily-life is suggested. It is recommended that this be combined with a statistical approach that allows for adjustments according to disease severity or the use of machine learning models. Finally, this review highlights the generalisation of cut-points developed on healthy populations to clinical populations is inappropriate.

Assessment of knowledge in palliative care of physical therapists students at a university hospital in Brazil.

BACKGROUND: In Brazil there are several challenges to reach a humanized health care. Among them is the well-known lack in academic education and training in palliative care field. This lack is mostly due to the modern medical care culture that prioritize curative medicine ahead of palliative care. As the goal of saving lives is rooted in medical training, death is still confronted as the main enemy of the health professionals. OBJECTIVE: To analyze the knowledge of palliative care among the physical therapists of a University Hospital. METHOD: This is a cross-sectional and descriptive study. The volunteers were physical therapists, who had worked in the hospital for more than six months, were included undergraduate students, experienced professionals and graduate students. A questionnaire with closed questions about palliative care was applied during the volunteers working hours. Data were analyzed descriptively. CONCLUSION: We conclude that, the vast majority of the evaluated professionals presented basic palliative care knowledge, but not in palliative care core components. The palliative care practice seemed often guided by the knowledge acquired in other fields, always with an intuitive character. Therefore, we detected a lack in the physical therapist training regarding palliative care. Summarily, physical therapists should receive a general training in palliative care still as an undergraduate, for a more effective and consistent professional practice later on.