Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects.

To assess the effects of consumer engagement in health care policy, research and services. We updated a review published in 2006 and 2009 and revised the previous search strategies for key databases (The Cochrane Central Register of Controlled Trials; MEDLINE; EMBASE; PsycINFO; CINAHL; Web of Science) up to February 2020. Selection criteria included randomised controlled trials assessing consumer engagement in developing health care policy, research, or health services. The International Association for Public Participation, Spectrum of Public Participation was used to identify, describe, compare and analyse consumer engagement. Outcome measures were effects on people; effects on the policy/research/health care services; or process outcomes. We included 23 randomised controlled trials with a moderate or high risk of bias, involving 136,265 participants. Most consumer engagement strategies adopted a consultative approach during the development phase of interventions, targeted to health services. Based on four large cluster-randomised controlled trials, there is evidence that consumer engagement in the development and delivery of health services to enhance the care of pregnant women results in a reduction in neonatal, but not maternal, mortality. From other trials, there is evidence that involving consumers in developing patient information material results in material that is more relevant, readable and understandable for patients, and can improve knowledge. Mixed effects are reported of consumer-engagement on the development and/or implementation of health professional training. There is some evidence that using consumer interviewers instead of staff in satisfaction surveys can have a small influence on the results. There is some evidence that consumers may have a role in identifying a broader range of health care priorities that are complementary to those from professionals. There is some evidence that consumer engagement in monitoring and evaluating health services may impact perceptions of patient safety or quality of life. There is growing evidence from randomised controlled trials of the effects of consumer engagement on the relevance and positive outcomes of health policy, research and services. Health care consumers, providers, researchers and funders should continue to employ evidence-informed consumer engagement in their jurisdictions, with embedded evaluation. Systematic review registration: PROSPERO CRD42018102595.

What Constitutes "Appropriate Care" for Low Back Pain?: Point-of-Care Clinical Indicators From Guideline Evidence and Experts (the STANDING Collaboration Project).

STUDY DESIGN: Multiround wiki-based Delphi expert panel survey. OBJECTIVE: To provide proof of concept for an alternative method for creating sets of nationally-agreed point-of-care clinical indicators, and obtain consensus among end-user groups on "appropriate care" for the assessment, diagnosis, acute, and ongoing care of people with low back pain (LBP). SUMMARY OF BACKGROUND DATA: The provision of inappropri ate and low value care for LBP is a significant healthcare and societal burden. Vague clinical practice guideline (CPG) recom mendations can be difficult to apply and measure in real world clinical practice, and a likely barrier to "appropriate care." METHODS: Draft "appropriate care" clinical indicators for LBP were derived from CPG recommendations published between 2011 and 2017. Included CPGs were independently appraised by two reviewers using the Appraisal of Guidelines for Research and Evaluation instrument. Headed by a Clinical Champion, a 20-member Expert Panel reviewed and commented on the draft indicators over a three-round modified e-Delphi process using a collaborative online wiki. At the conclusion of each review round, the research team and the Clinical Champion synthesized and responded to experts' comments and incorporated feedback into the next iteration of the draft indicators. RESULTS: From seven CPGs and six qualitative meta-syntheses, 299 recommendations and themes were used to draft 42 "appropriateness" indicators. In total, 17 experts reviewed these indicators over 18 months. A final set of 27 indicators compris ing screening and diagnostic processes (n = 8), assessment (n = 3), acute (n = 5), and ongoing care (n = 9), and two which crossed the acute-ongoing care continuum. Most indicators were geared toward recommended care (n = 21, 78%), with the remainder focused on care to be avoided. CONCLUSION: These 27 LBP clinical indicators can be used by healthcare consumers, clinicians, researchers, policy makers/ funders, and insurers to guide and monitor the provision of "appropriate care" for LBP.Level of Evidence: 4.

Attitude change and increased confidence with management of chronic breathlessness following a health professional training workshop: a survey evaluation.

BACKGROUND: Clinicians and people living with chronic breathlessness have expressed a need to better understand and manage this symptom. The aim of this study was to evaluate a 3-day health professional training workshop on the practical management of chronic breathlessness. METHODS: Workshop design and delivery were based on current understandings and clinical models of chronic breathlessness management, principles of transformative learning, and included sessions co-designed with people living with breathlessness. Registrants were invited to complete pre and post-workshop surveys. Pre and 1-week post-workshop online questionnaires assessed familiarity and confidence about workshop objectives (0[lowest]-10[highest] visual analogue scale), attitudes and practices regarding chronic breathlessness (agreement with statements on 5-point Likert scales). Post-workshop, participants were asked to describe implementation plans and anticipated barriers. Baseline familiarity and confidence were reported as mean (SD) and change examined with paired t-tests. Pre-post attitudes and practices were summarised by frequency/percentages and change examined non-parametrically (5-point Likert scale responses) or using a McNemar test of change (binary responses). RESULTS: Forty-seven of 55 registrants joined the study; 39 completed both pre and post-workshop questionnaires (35 female; 87% clinicians; median 8 years working with people with chronic breathlessness). Post-workshop, greatest gains in confidence were demonstrated for describing biopsychosocial concepts unpinning chronic breathlessness (mean change confidence = 3.2 points; 95% CI 2.7 to 4.0, p < 0.001). Respondents significantly changed their belief toward agreement that people are able to rate their breathlessness intensity on a scale (60 to 81% agreement) although only a minority strongly agreed with this statement at both time points (pre 11%, post 22%). The largest shift in attitude was toward agreement (z statistic 3.74, p < 0.001, effect size r = 0.6) that a person's experience of breathlessness should be used to guide treatment decisions (from 43 to 73% strong agreement). Participants' belief that cognitive behavioural strategies are effective for relief of breathlessness changed further toward agreement after the workshop (81 to 100%, McNemar test chi- square = 5.14, p = 0.02). CONCLUSION: The focus of this training on biopsychosocial understandings of chronic breathlessness and involvement of people living with this symptom were valued. These features were identified as facilitators of change in fundamental attitudes and preparedness for practice.

Selecting, refining and identifying priority Cochrane Reviews in health communication and participation in partnership with consumers and other stakeholders.

BACKGROUND: Priority-setting partnerships between researchers and stakeholders (meaning consumers, health professionals and health decision-makers) may improve research relevance and value. The Cochrane Consumers and Communication Group (CCCG) publishes systematic reviews in 'health communication and participation', which includes concepts such as shared decision-making, patient-centred care and health literacy. We aimed to select and refine priority topics for systematic reviews in health communication and participation, and use these to identify five priority CCCG Cochrane Reviews. METHODS: Twenty-eight participants (14 consumers, 14 health professionals/decision-makers) attended a 1-day workshop in Australia. Using large-group activities and voting, participants discussed, revised and then selected 12 priority topics from a list of 21 previously identified topics. In mixed small groups, participants refined these topics, exploring underlying problems, who they affect and potential solutions. Thematic analysis identified cross-cutting themes, in addition to key populations and potential interventions for future Cochrane Reviews. We mapped these against CCCG's existing review portfolio to identify five priority reviews. RESULTS: Priority topics included poor understanding and implementation of patient-centred care by health services, the fact that health information can be a low priority for health professionals, communication and coordination breakdowns in health services, and inadequate consumer involvement in health service design. The four themes underpinning the topics were culture and organisational structures, health professional attitudes and assumptions, inconsistent experiences of care, and lack of shared understanding in the sector. Key populations for future reviews were described in terms of social health characteristics (e.g. people from indigenous or culturally and linguistically diverse backgrounds, elderly people, and people experiencing socioeconomic disadvantage) more than individual health characteristics. Potential interventions included health professional education, interventions to change health service/health professional culture and attitudes, and health service policies and standards. The resulting five priority Cochrane Reviews identified were improving end-of-life care communication, patient/family involvement in patient safety, improving future doctors' communication skills, consumer engagement strategies, and promoting patient-centred care. CONCLUSIONS: Stakeholders identified priority topics for systematic reviews associated with structural and cultural challenges underlying health communication and participation, and were concerned that issues of equity be addressed. Priority-setting with stakeholders presents opportunities and challenges for review producers.

Research priorities in health communication and participation: international survey of consumers and other stakeholders.

OBJECTIVE: To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). SETTING: International. PARTICIPANTS: We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). DESIGN: Survey. METHODS: We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. RESULTS: Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. CONCLUSIONS: Consumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals' communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

The Australian 75+ Health Assessment: could it detect early functional decline better?

OBJECTIVE: The aim of the present study was to identify opportunities to improve the reach and impact of the Australian Medicare 75+ Health Assessment (75+HA) to detect early functional decline (FD). METHODS: A comparison of two published review articles produced two outputs: (1) assessments identified in the systematic review that underpinned the 75+HA items were ranked for evidence of effectiveness and compared with the volume of research into assessment areas identified by a recent review on indicators of early FD; and (2) items in the 75+HA were compared with those in the recent review. RESULTS: The review underpinning the 75+HA found 19 assessment areas, with strongest evidence of effectiveness for vision/hearing, teeth/oral, balance/gait, cognitive and service use. The more recent review reported on six domains (eight subdomains) of FD assessment: physical and cognitive elements of the performance capacity domain were the least well assessed, whereas the most comprehensively assessed domains were health service use, performance capacity (mental subdomain), participation (motivation/volition subdomain) and demographics. The 75+HA addresses only some items related to early FD as identified by the recent literature. CONCLUSION: Reassessment of the 75+HA with a view to including current evidence-based assessments for early FD is recommended. Updating the 75+HA items with ways to detect FD earlier may increase its relevance to Australia's ageing population.

Consumer views about aging-in-place.

BACKGROUND: Supporting older people's choices to live safely and independently in the community (age-in-place) can maximize their quality of life and minimize unnecessary hospitalizations and residential care placement. Little is known of the views of older people about the aging-in-place process, and how they approach and prioritize the support they require to live in the community accommodation of their choice. PURPOSE: To explore and synthesize the experiences and perspectives of older people planning for and experiencing aging-in-place. METHODS: Two purposively sampled groups of community-dwelling people aged 65+ years were recruited for individual interviews or focus groups. The interviews were semistructured, audio-recorded, and transcribed. Themes were identified by three researchers working independently, then in consort, using a qualitative thematic analysis approach. RESULTS: Forty-two participants provided a range of insights about, and strategies for, aging-in-place. Thematic saturation was reached before the final interviews. We identified personal characteristics (resilience, adaptability, and independence) and key elements of successful aging-in-place, summarized in the acronym HIPFACTS: health, information, practical assistance, finance, activity (physical and mental), company (family, friends, neighbors, pets), transport, and safety. DISCUSSION: This paper presents rich, and rarely heard, older people's views about how they and their peers perceive, characterize, and address changes in their capacity to live independently and safely in the community. Participants identified relatively simple, low-cost, and effective supports to enable them to adapt to change, while retaining independence and resilience. The findings highlighted how successful aging-in-place requires integrated, responsive, and accessible primary health and community services.

Does the absence of a supportive family environment influence the outcome of a universal intervention for the prevention of depression?

To date, universal, school-based interventions have produced limited success in the long-term prevention of depression in young people. This paper examines whether family relationship support moderates the outcomes of a universal, school-based preventive intervention for depression in adolescents. It reports a secondary analysis of data from the beyondblue schools research initiative. Twenty-five matched pairs of secondary schools were randomly assigned to an intervention or control condition (N = 5633 Grade 8 students). The multi-component, school-based intervention was implemented over a 3-year period, with 2 years of follow-up in Grades 11 and 12. For those available at follow-up, small but significantly greater reductions in depressive and anxiety symptoms and improvements in emotional wellbeing were found over time for the intervention group compared to the control among those who experienced low family relationship support in Grade 8. For those who did not experience low family relationship support in Grade 8, no significant effects of the invention were found over the control condition. This pattern of results was also found for the intent-to-treat sample for measures of depression and anxiety. Previous research may have overlooked important moderating variables that influence the outcome of universal approaches to the prevention of depression. The findings raise issues of the relative costs and benefits of universal versus targeted approaches to the prevention of depression.

The psychometric properties, feasibility and utility of behavioural-observation methods in pain assessment of cognitively impaired elderly people in acute and long-term care: A systematic review.

BACKGROUND: The key factor to improving pain management for cognitively impaired elderly patients is accurate pain assessment. Behavioural-observation methods are required for individuals who cannot communicate their pain verbally. A thorough understanding of the key components of behavioural pain assessment and the use of valid and reliable behavioural pain assessment tools would enhance the assessment of pain in this vulnerable population. OBJECTIVES: To identify the key components involved in behavioural pain assessment in cognitively impaired elderly people and to analyse the reported psychometric properties, feasibility and utility of behavioural pain assessment tools. SELECTION CRITERIA: Studies using descriptive, correlation and comparative designs were included.Cognitively impaired elderly people older than 65 years in aged care, acute care or nursing home settings were included.Components measured in behavioural pain assessment; psychometric properties, feasibility and utility of behavioural pain assessment tools used to assess pain in cognitively impaired elderly people in acute or long-term care settings.Identification of behavioural criteria for assessment of pain and investigation of any aspect of the psychometric properties of behavioural pain assessment tools. SEARCH STRATEGY: An initial limited search of MEDLINE and CINAHL to find published studies between 1990 to 2010 in the English Language was undertaken, following an analysis of the text words contained in the title and abstract. A second search using all identified keywords and index terms was undertaken and extended to a further seven relevant databases. Thirdly, the reference lists of all identified reports and articles were searched for additional studies. METHODOLOGICAL QUALITY: Studies selected for retrieval were assessed for inclusion by two independent reviewers for methodological validity using the Critical Appraisal Tool for Psychometric Studies adapted from Fallon, Westaway, and Moloney1. DATA EXTRACTION: Quantitative data were extracted from included studies using the Data Extraction Tool for Psychometric Studies adapted from Fallon, Westaway, and Mahoney1. DATA SYNTHESIS: As statistical pooling was not possible, evidence in relation to psychometric properties, was analysed and presented in narrative summary. RESULTS: Twenty three studies were included in the review. No tool has been found suitable for use across both acute and long-term care settings. Nevertheless, three tools show the most promising outcomes and potential for use. CONCLUSIONS: Although behavioural measures may inform healthcare providers on the presence of pain in an individual, they do not provide information about the aetiology of pain. Hence, pain assessment should not depend solely on behavioural observation conducted using standardised behavioural pain assessment tools, but regarded as an essential component of a multifaceted approach to pain assessment. Clinicians may select tools which show promising qualities and pilot them in their respective clinical settings and populations. In particular, the MPS, the PACSLAC and the PAINAD are recommended for potential use in the cognitively impaired elderly in acute and long-term care settings.Several tools show promise for use in acute or long-term care settings. These tools require tool revisions to strengthen their psychometric properties. Instead of developing new tools, modification of existing tools and conducting further psychometric evaluations on them can provide more evidence of their psychometric properties.

School-based prevention of depression: a 2-year follow-up of a randomized controlled trial of the beyondblue schools research initiative.

PURPOSE: To investigate the effectiveness of a universal intervention designed to reduce depressive symptoms experienced by adolescents at high school. The results from annual assessments during the 3-year intervention and a 2-year follow-up are reported. METHODS: Twenty-five pairs of secondary schools matched on socio-economic status were randomly assigned to either an intervention or a comparison group (n = 5,633 year 8 students, mean age = 13.1 years, SD = .5). The intervention used a comprehensive classroom curriculum program, enhancements to school climate, improvements in care pathways, and community forums. A range of measures completed by students and teachers was used to assess changes in depressive symptoms, risk and protective factors relevant to depression, and the quality of the school environment. RESULTS: Changes in the levels of depressive symptoms and in the levels of risk and protective factors experienced by students in the two groups did not differ significantly over the 5 years of the study. Statistically significant differences in the ratings of school climate across this time were found only for teacher-rated assessments. CONCLUSIONS: There was little evidence that a multicomponent universal intervention delivered over a 3-year period reduced levels of depressive symptoms among participating students. Implementing universal interventions to improve student mental health is difficult in school settings that commonly have a crowded agenda of educational and health-related programs. Successful implementation will require programs which are perceived by teachers and students as relevant to educational and learning goals, and which can be effectively delivered in conjunction with other school programs.

School-based prevention of depression: a randomised controlled study of the beyondblue schools research initiative.

BACKGROUND: Depressive disorders are experienced by 3-5% of the adolescent population at any point of time. They adversely affect adolescent development in a range of areas and greatly increase risk for suicide. The present study investigated the effectiveness of a universal intervention designed to reduce depressive symptoms among students commencing high school. METHODS: Twenty-five pairs of secondary schools matched on socio-economic status were randomly assigned to either an intervention or a comparison group (n = 5,634 Year 8 students). The intervention extended over a 3-year period and utilised a comprehensive classroom curriculum programme, enhancements to the school climate, improvements in care pathways, and community forums. A range of measures completed by students, average age at baseline = 13.1 years (SD = .5), and teachers was used to assess changes in depressive symptoms, risk and protective factors relevant to depression, and the quality of the school environment. RESULTS: Changes in the level of depressive symptoms and in the levels of risk and protective factors experienced by students in the two groups did not differ significantly over the 3 years of the study. Furthermore, statistically significant differences in the ratings of school climate across this time period were found only for staff-rated assessments. CONCLUSIONS: Despite using an extensive, structured programme, based on best evidence to increase protective factors and reduce risk factors at the individual and school levels, the intervention did not reduce levels of depressive symptoms among participating adolescents. The results draw attention to the difficulties faced when implementing large-scale, school-based, universal preventive interventions. These include the need to develop methods to effectively train teachers across large geographical regions to deliver new interventions with fidelity, the difficulty of engaging young adolescents with prevention programmes, and the long period of time required to implement policy and practice changes at 'whole-school' levels.

Community use of intranasal midazolam for managing prolonged seizures.

BACKGROUND: Until a few years ago, rectal diazepam (RD) was the only option available to parents and carers managing prolonged seizures. However, its use in the community was limited due to the requirement for privacy, and because education staff in South Australia are not permitted to carry out invasive procedures. METHOD: Following a literature review, a seizure management training package was developed to enhance the implementation of a trial treatment protocol for the administration of intranasal midazolam (INM). Parents, carers and education staff were later surveyed about their experiences and perceptions. RESULTS: Intranasal midazolam was administered to 131 people (51 children and 80 adults), with 96.9% control of seizures, and only one minor adverse event. Parents expressed a preference for INM over RD because of the shorter time it took to take effect and wear off, and the ability to administer it in public if necessary. CONCLUSION: Intranasal midazolam is a safe and practical alternative to rectal diazepam for managing prolonged seizures in the community.

The beyondblue Schools Research Initiative: conceptual framework and intervention.

OBJECTIVE: To describe the rationale, conceptual framework and content of the intervention for the beyondblue Schools Research Initiative. CONCLUSIONS: The beyondblue Schools Research Initiative aims to prevent the development of depression in young people through increasing individual and environmental protective factors within the school context. The model draws on evidence that demonstrates the important role played by individual and environmental characteristics in buffering the impact of adversity. The school provides a forum in which both individual and environmental change may be produced in order to increase some of these key protective characteristics. The project also draws together health, education and other key services to provide more effective pathways to enable young people to receive professional help when required.