General Practice and Primary Care - Research Publications
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ItemUsing experience-based codesign to coproduce aphasia rehabilitation services: study protocol(BMJ PUBLISHING GROUP, 2021-11)INTRODUCTION: Aphasia is an impairment of language that occurs in 30%-40% of stroke survivors. This often chronic condition results in poor outcomes for the individual with aphasia and their family. Long-term aphasia management is limited, with few people receiving sufficient services by 6-12 months postonset. We present a protocol for the development of coproduced aphasia service elements. We will use experience-based codesign (EBCD), an approach that enables service users and providers to collaboratively develop services and care pathways. Drawing on the experiences of people with aphasia, their families and clinicians we will establish priorities for the development of new services and later work together to codesign them. METHODS AND ANALYSIS: This research will be coproduced with people with aphasia (n=30-60), their families (n=30-60) and speech pathologists (n=30-60) in Queensland, Australia, using EBCD. A consumer advisory committee will provide oversight and advice throughout the research. In phase 1, we will use semistructured interviews and the nominal group technique to explore experiences and unmet needs in aphasia rehabilitation. Data will be analysed using thematic analysis and the resulting themes will be prioritised in multistakeholder focus groups. Outcomes of phase 1 will inform future research (phase 2) to codesign services. Financial costs and participant experiences of EBCD will be measured. ETHICS AND DISSEMINATION: Human Research Ethics Committee approval for phase 1 has been obtained (HREC/2020/QRBW/61368). Results will be reported in peer-reviewed journal articles, presented at relevant conferences and, following EBCD suggested best practice, fed back to participants and community members at a celebratory event at completion of the project. The inclusion of service users in all stages of research will facilitate an integrated approach to knowledge translation. A summary of research findings will be made available to participating sites.
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ItemThe CORE study-An adapted mental health experience codesign intervention to improve psychosocial recovery for people with severe mental illness: A stepped wedge cluster randomized-controlled trial(WILEY, 2021-12)BACKGROUND: Mental health policies outline the need for codesign of services and quality improvement in partnership with service users and staff (and sometimes carers), and yet, evidence of systematic implementation and the impacts on healthcare outcomes is limited. OBJECTIVE: The aim of this study was to test whether an adapted mental health experience codesign intervention to improve recovery-orientation of services led to greater psychosocial recovery outcomes for service users. DESIGN: A stepped wedge cluster randomized-controlled trial was conducted. SETTING AND PARTICIPANTS: Four Mental Health Community Support Services providers, 287 people living with severe mental illnesses, 61 carers and 120 staff were recruited across Victoria, Australia. MAIN OUTCOME MEASURES: The 24-item Revised Recovery Assessment Scale (RAS-R) measured individual psychosocial recovery. RESULTS: A total of 841 observations were completed with 287 service users. The intention-to-treat analysis found RAS-R scores to be similar between the intervention (mean = 84.7, SD= 15.6) and control (mean = 86.5, SD= 15.3) phases; the adjusted estimated difference in the mean RAS-R score was -1.70 (95% confidence interval: -3.81 to 0.40; p = .11). DISCUSSION: This first trial of an adapted mental health experience codesign intervention for psychosocial recovery outcomes found no difference between the intervention and control arms. CONCLUSIONS: More attention to the conditions that are required for eight essential mechanisms of change to support codesign processes and implementation is needed. PATIENT AND PUBLIC INVOLVEMENT: The State consumer (Victorian Mental Illness Awareness Council) and carer peak bodies (Tandem representing mental health carers) codeveloped the intervention. The adapted intervention was facilitated by coinvestigators with lived-experiences who were coauthors for the trial and process evaluation protocols, the engagement model and explanatory model of change for the trial.
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Item435 - Perspectives of the general public on dementia risk reduction (DRR) and implications for implementation: a qualitative evidence synthesis(Cambridge University Press (CUP), 2020-10)There is limited understanding of which factors most influence take-up of DRR behaviour in the general population. This evidence gap may limit the effectiveness of DRR implementation and, hence, impede translation of increasing evidence for DRR1 into real-world public health benefits. Reviews of quantitative studies have identified poor knowledge and persistence of myths about ageing2,3 as important. However, these findings are limited by the scope of included questionnaires. Qualitative literature reporting the perspectives of the general public offers an opportunity to increase this understanding. Qualitative studies can examine poorly understood phenomena in greater depth and with fewer a priori assumptions. Qualitative evidence synthesis (QES) is increasingly recognised as valuable, particularly in relation to complex interventions like DRR. We will present a QES regarding the perspectives of dementia- free members of the general public towards DRR. Searches indicate that no QES for this topic currently exists. Systematic searches of Medline, PsycINFO, Embase and CINAHL for studies published since 1995 that have used qualitative methods to explore DRR perspectives in the general public were undertaken, supplemented by hand searches of included studies’ reference lists. Following independent screening by two reviewers, 41 publications based on 37 individual studies meeting inclusion criteria have been identified. Data will be analysed using thematic synthesis, as outlined by Thomas and Harden (2008)4 and recommended for QES regarding complex health interventions5. ‘Line-by-line’ inductive coding and development of descriptive themes across studies will produce a summary of the perspectives of the general public for DRR. A conceptual framework explaining the relationships between key themes and considering the implications for implementation will be proposed. The Critical Appraisal Skills Programme (CASP) tool will be used to appraise included studies. Rather than imposing an arbitrary quality cut-off point for inclusion, sensitivity analyses will be used to examine the influence of lower quality studies on review findings. Finally, the Confidence in the Evidence from Qualitative Reviews (CERQual) approach will facilitate assessment of confidence in review findings to aid future use. Data extraction is ongoing. Findings from this synthesis will support better targeted quantitative examination of DRR implementation determinants and more strategic intervention design. 1.World Health Organisation. Risk reduction of cognitive decline and dementia: WHO guidelines. World Health Organisation. 2019. Geneva. Licence CC BY-NC-SA 3.0 IGO 2.Cahill, S., Pierce, M., Werner, P., Darley, A., Bobersky, A. A systematic review of the public’s knowledge and understanding of Alzheimer’s disease and dementia. Alz Dis Assoc Disord. 2015; 29:255-275 3.Cations, M., Radisic, G., Crotty, M., Laver, K.E. What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys. PLoS One. 2018, 13(4):e0196085 4.Thomas, J. and Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews, BMC Medical Research Methodology. 2008 July; 8:45. doi 10.1186/1471-2288-8-45 5.Noyes, J., Booth, A., Cargo, M., et al. (2018). Cochrane Qualitative and Implementation Methods Group guidance series – paper 1: introduction. J of Clin Epidemiol. 2018; 97:35-38
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ItemGeneral population perspectives of dementia risk reduction and the implications for intervention: A systematic review and thematic synthesis of qualitative evidence(PUBLIC LIBRARY SCIENCE, 2021-09-17)BACKGROUND: Evidence for the potential prevention of dementia through lifestyle risk factor modification is growing and has prompted examination of implementation approaches. Understanding the general population's perspectives regarding dementia risk reduction is key to implementation. This may provide useful insights into more effective and efficient ways to help people change relevant beliefs, motivations and behaviour patterns. We conducted a systematic review and thematic synthesis of qualitative evidence to develop an integrated model of general population dementia risk reduction perspectives and the implications for intervention in research and implementation contexts. METHODS AND FINDINGS: We searched electronic databases, supplemented by lateral search techniques, to identify studies published since 1995 reporting qualitative dementia risk reduction perspectives of the non-expert general population who do not have dementia. Thematic synthesis, incorporating an expert panel discussion, was used to identify overarching themes and develop an integrated model to guide intervention to support individuals to adopt and maintain dementia risk reduction behaviour patterns. Quality of included studies and confidence in review findings were systematically appraised. We included 50 papers, reflecting the views of more than 4,500 individuals. Main themes were: 1) The need for effective education about a complex topic to prevent confusion and facilitate understanding and empowerment; 2) Personally relevant short- and long-term benefits of dementia risk reduction behaviour patterns can generate value and facilitate action; 3) Individuals benefit from trusted, reliable and sensitive support to convert understanding to personal commitment to relevant behaviour change; 4) Choice, control and relevant self-regulatory supports help individuals take-action and direct their own progress; 5) Collaborative and empowering social opportunities can facilitate and propagate dementia risk reduction behaviour change; 6) Individual behaviour patterns occur in social contexts that influence beliefs through heuristic processes and need to be understood. Findings indicate that, for intervention: 1) education is key, but both content and delivery need to be tailored; 2) complementary interventions to support self-regulation mechanisms and social processes will increase education effectiveness; 3) co-design principles should guide intervention design and delivery processes; 4) all interventions need to be supported by context-specific data. CONCLUSIONS: This systematic review and thematic synthesis provides a comprehensive, integrated model of the dementia risk reduction perspectives of the general population and intervention approaches to support behaviour change that can be applied in clinical trial and real-world implementation settings. Findings extend existing knowledge and may assist more effective intervention design and delivery.
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ItemA scoping review of the use of co-design methods with culturally and linguistically diverse communities to improve or adapt mental health services(WILEY, 2021-01)Mental health services are increasingly encouraged to use co-design methodologies to engage individuals and families affected by mental health problems in service design and improvement. This scoping review aimed to identify research that used co-design methods with Culturally and Linguistically Diverse (CALD) communities in mental health services, and to identify methodological considerations for working with this population. In October 2019, we searched five electronic databases (CINAHL, PsycINFO, EMBASE, MEDLINE, Web of Science) to identify papers published in which people from CALD backgrounds were engaged in the co-design of a mental health service or program. Searches were limited to peer-reviewed articles published in English in the last 25 years (1993-2019). The search identified nine articles that matched the inclusion criteria. Using a scoping review methodology, the first author charted the data using extraction fields and then used qualitative synthesis methods to identify themes. Data were grouped into themes relevant to the research question. The two key themes relate first, to improving the experience for CALD communities when engaging in co-design research and second, to the development of co-design methods themselves. These findings support the need for further research into the transferability of co-design tools with CALD communities, particularly if co-design is to become a best practice method for service design and improvement. This scoping review identified methodological and practical consideration for researchers looking to use co-design with CALD communities for mental health service design, re-design or quality improvement initiatives. Further research is required to explore experiences of co-design methods, including documented protocols such as experience-based co-design, with CALD communities. This review indicates that explanatory models of mental health, community and co-design impact partnerships with CALD communities, and need to be understood to optimise the quality of these relationships when using co-design methods.
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ItemExperiences of an adolescent inpatient model of care: Adolescent and caregiver perspectives(WILEY, 2020-08)PROBLEM: Adolescent inpatient units have been studied regarding their effectiveness, yet little is known about the experiences of young people who are admitted and their caregivers. It is important to address this gap to understand adolescent inpatient models of care and therapeutic outcomes to maximize the benefit. Our aim was to explore adolescent and caregivers' experiences of an inpatient model of care (MoC) and perceived helpfulness. METHODS: A longitudinal prospective qualitative design was utilized. Semistructured interviews were conducted with 16 adolescents and 12 caregivers at T1 (admission), T2 (discharge), and T3 (6 months postdischarge). Data were analysed first thematically and then using trajectory analysis. Themes from the three time-points are presented from the combined perspectives of adolescents and caregivers. FINDINGS: Experiences described followed a recovery narrative consisting of three key phases which included, "waiting for help" (T1), "help arrived" (T2), and having "returned to regular life" (T3). The overarching trajectory theme was a "winding road to recovery." CONCLUSION: Findings provide insights into the lived experiences from adolescents who have had an inpatient stay and their caregivers of an adolescent-specific inpatient MoC. These findings can help conceptualize quality adolescent models of care for young people and their families.
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ItemDementia and the risk of short-term readmission and mortality after a pneumonia admission(PUBLIC LIBRARY SCIENCE, 2021-01-28)BACKGROUND: At time of discharge after a pneumonia admission, care planning for older persons with dementia is essential. However, care planning is limited by lack of knowledge on the short-term prognosis. AIM: To investigate 30-day mortality and readmission after hospital discharge for pneumonia in persons with versus without dementia, and to investigate how these associations vary with age, time since discharge, and medication use. METHODS: Using the Danish registries, we investigated 30-day mortality and readmission in persons (+65 years) discharged after pneumonia in 2000-2016 (N = 298,872). Adjusted mortality rate ratios (aMRRs) and incidence rate ratios (aIRRs) were calculated for persons with versus without dementia, and we investigated if these associations varied with use of benzodiazepines, opioids, and antipsychotics, and with age and time since discharge. RESULTS: Among 25,948 persons with dementia, 4,524 died and 5,694 were readmitted within 30 days. The risk of 30-day mortality was 129% higher (95% CI 2.21-2.37) in persons with versus without dementia after adjustment for sociodemographic characteristics, admission-related factors, and comorbidities. Further, the highest mortality risk was found in persons with both dementia and use of antipsychotics (aMRR: 3.39, 95% CI 3.19-3.59); 16% of deaths in this group could not be explained by the independent effect of each exposure. In those with dementia, the highest aMRRs were found for the youngest and for the first days after discharge. The risk of 30-day readmission was 7% higher (95% CI 1.04-1.10) in persons with versus without dementia. In those with dementia, the highest aIRRs were found for the first days after discharge. CONCLUSIONS: Dementia was associated with higher short-term mortality after pneumonia, especially in users of antipsychotics, and with slightly higher readmission, especially in the first days after discharge. This is essential knowledge in the care planning for persons with dementia who are discharged after a pneumonia admission.
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ItemMatching depression management to severity prognosis in primary care: results of the Target-D randomised controlled trial(ROYAL COLL GENERAL PRACTITIONERS, 2021-02)BACKGROUND: Mental health treatment rates are increasing, but the burden of disease has not reduced. Tools to support efficient resource distribution are required. AIM: To investigate whether a person-centred e-health (Target-D) platform matching depression care to symptom severity prognosis can improve depressive symptoms relative to usual care. DESIGN AND SETTING: Stratified individually randomised controlled trial in 14 general practices in Melbourne, Australia, from April 2016 to February 2019. In total, 1868 participants aged 18-65 years who had current depressive symptoms; internet access; no recent change to antidepressant; no current antipsychotic medication; and no current psychological therapy were randomised (1:1) via computer-generated allocation to intervention or usual care. METHOD: The intervention was an e-health platform accessed in the GP waiting room, comprising symptom feedback, priority-setting, and prognosis-matched management options (online self-help, online guided psychological therapy, or nurse-led collaborative care). Management options were flexible, neither participants nor staff were blinded, and there were no substantive protocol deviations. The primary outcome was depressive symptom severity (9-item Patient Health Questionnaire [PHQ-9]) at 3 months. RESULTS: In intention to treat analysis, estimated between- arm difference in mean PHQ-9 scores at 3 months was -0.88 (95% confidence interval [CI] = -1.45 to -0.31) favouring the intervention, and -0.59 at 12 months (95% CI = -1.18 to 0.01); standardised effect sizes of -0.16 (95% CI = -0.26 to -0.05) and -0.10 (95% CI = -0.21 to 0.002), respectively. No serious adverse events were reported. CONCLUSION: Matching management to prognosis using a person-centred e-health platform improves depressive symptoms at 3 months compared to usual care and could feasibly be implemented at scale. Scope exists to enhance the uptake of management options.
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ItemNo Preview AvailableClinical efficacy of a Decision Support Tool (Link-me) to guide intensity of mental health care in primary practice: a pragmatic stratified randomised controlled trial(ELSEVIER SCI LTD, 2021-03)BACKGROUND: The volume and heterogeneity of mental health problems that primary care patients present with is a substantial challenge for health systems, and both undertreatment and overtreatment are common. We developed Link-me, a patient-completed Decision Support Tool, to predict severity of depression or anxiety, identify priorities, and recommend interventions. In this study, we aimed to examine if Link-me reduces psychological distress among individuals predicted to have minimal/mild or severe symptoms of anxiety or depression. METHODS: In this pragmatic stratified randomised controlled trial, adults aged 18-75 years reporting depressive or anxiety symptoms or use of mental health medication were recruited from 23 general practices in Australia. Participants completed the Decision Support Tool and were classified into three prognostic groups (minimal/mild, moderate, severe), and those in the minimal/mild and severe groups were eligible for inclusion. Participants were individually and randomly assigned (1:1) by a computer-generated allocation sequence to receive either prognosis-matched care (intervention group) or usual care plus attention control (control group). Participants were not blinded but intervention providers were only notified of those allocated to the intervention group. Outcome assessment was blinded. The primary outcome was the difference in the change in scores between the intervention and control group, and within prognostic groups, on the 10-item Kessler Psychological Distress Scale at 6 months post randomisation. The trial was registered on the Australian and New Zealand Clinical Trials Registry, ACTRN12617001333303. OUTCOMES: Between Nov 21, 2017, and Oct 31, 2018, 24 616 patients were invited to complete the eligibility screening survey. 1671 of these patients were included and randomly assigned to either the intervention group (n=834) or the control group (n=837). Prognosis-matched care was associated with greater reductions in psychological distress than usual care plus attention control at 6 months (p=0·03), with a standardised mean difference (SMD) of -0·09 (95% CI -0·17 to -0·01). This reduction was also seen in the severe prognostic group (p=0·003), with a SMD of -0·26 (-0·43 to -0·09), but not in the minimal/mild group (p=0·73), with a SMD of 0·04 (-0·17 to 0·24). In the complier average causal effect analysis in the severe prognostic group, differences were larger among those who received some or all aspects of the intervention (SMD range -0·58 to -1·15). No serious adverse effects were recorded. INTERPRETATION: Prognosis-based matching of interventions reduces psychological distress in patients with anxiety or depressive symptoms, particularly in those with severe symptoms, and is associated with better outcomes when patients access the recommended treatment. Optimisation of the Link-me approach and implementation into routine practice could help reduce the burden of disease associated with common mental health conditions such as anxiety and depression. FUNDING: Australian Government Department of Health.
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ItemNo Preview AvailableRapid Design and Delivery of an Experience-Based Co-designed Mobile App to Support the Mental Health Needs of Health Care Workers Affected by the COVID-19 Pandemic: Impact Evaluation Protocol (Preprint)(JMIR Publications, 2020-12-02)BACKGROUND
The COVID-19 pandemic has highlighted the importance of health care workers’ mental health and well-being for the successful function of the health care system. Few targeted digital tools exist to support the mental health of hospital-based health care workers, and none of them appear to have been led and co-designed by health care workers.
OBJECTIVERMHive is being led and developed by health care workers using experience-based co-design (EBCD) processes as a mobile app to support the mental health challenges posed by the COVID-19 pandemic to health care workers. We present a protocol for the impact evaluation for the rapid design and delivery of the RMHive mobile app.
METHODSThe impact evaluation will adopt a mixed methods design. Qualitative data from photo interviews undertaken with up to 30 health care workers and semistructured interviews conducted with up to 30 governance stakeholders will be integrated with qualitative and quantitative user analytics data and user-generated demographic and mental health data entered into the app. Analyses will address three evaluation questions related to engagement with the mobile app, implementation and integration of the app, and the impact of the app on individual mental health outcomes. The design and development will be described using the Mobile Health Evidence Reporting and Assessment guidelines. Implementation of the app will be evaluated using normalization process theory to analyze qualitative data from interviews combined with text and video analysis from the semistructured interviews. Mental health impacts will be assessed using the total score of the 4-item Patient Health Questionnaire (PHQ4) and subscale scores for the 2-item Patient Health Questionnaire for depression and the 2-item Generalized Anxiety Scale for anxiety. The PHQ4 will be completed at baseline and at 14 and 28 days.
RESULTSThe anticipated average use period of the app is 30 days. The rapid design will occur over four months using EBCD to collect qualitative data and develop app content. The impact evaluation will monitor outcome data for up to 12 weeks following hospital-wide release of the minimal viable product release. The study received funding and ethics approvals in June 2020. Outcome data is expected to be available in March 2021, and the impact evaluation is expected to be published mid-2021.
CONCLUSIONSThe impact evaluation will examine the rapid design, development, and implementation of the RMHive app and its impact on mental health outcomes for health care workers. Findings from the impact evaluation will provide guidance for the integration of EBCD in rapid design and implementation processes. The evaluation will also inform future development and rollout of the app to support the mental health needs of hospital-based health care workers more widely.
INTERNATIONAL REGISTERED REPORTDERR1-10.2196/26168