The diversity of providers' and consumers' views of virtual versus inpatient care provision: a qualitative study.

BACKGROUND: A broad-based international shift to virtual care models over recent years has accelerated following COVID-19. Although there are increasing numbers of studies and reviews, less is known about clinicians' and consumers' perspectives concerning virtual modes in contrast to inpatient modes of delivery. METHODS: We conducted a mixed-methods study in late 2021 examining consumers' and providers' expectations of and perspectives on virtual care in the context of a new facility planned for the north-western suburbs of Sydney, Australia. Data were collected via a series of workshops, and a demographic survey. Recorded qualitative text data were analysed thematically, and surveys were analysed using SPSS v22. RESULTS: Across 12 workshops, 33 consumers and 49 providers from varied backgrounds, ethnicities, language groups, age ranges and professions participated. Four advantages, strengths or benefits of virtual care reported were: patient factors and wellbeing, accessibility, better care and health outcomes, and additional health system benefits, while four disadvantages, weaknesses or risks of virtual care were: patient factors and wellbeing, accessibility, resources and infrastructure, and quality and safety of care. CONCLUSIONS: Virtual care was widely supported but the model is not suitable for all patients. Health and digital literacy and appropriate patient selection were key success criteria, as was patient choice. Key concerns included technology failures or limitations and that virtual models may be no more efficient than inpatient care models. Considering consumer and provider views and expectations prior to introducing virtual models of care may facilitate greater acceptance and uptake.

Innovative models of healthcare delivery: an umbrella review of reviews.

OBJECTIVE: To undertake a synthesis of evidence-based research for seven innovative models of care to inform the development of new hospitals. DESIGN: Umbrella review. SETTING: Interventions delivered inside and outside of acute care settings. PARTICIPANTS: Children and adults with one or more identified acute or chronic health conditions. DATA SOURCES: PsycINFO, Ovid MEDLINE and CINAHL. PRIMARY AND SECONDARY OUTCOME MEASURES: Clinical indicators and mortality, healthcare utilisation, quality of life, self-management and self-care and patient knowledge. RESULTS: A total of 66 reviews were included, synthesising evidence from 1272 primary studies across the 7 models of care. Virtual care was the most common model studied, addressed by 47 (73%) of the reviews. Common outcomes evaluated across reviews were clinical indicators and mortality, healthcare utilisation, self-care and self-management, patient knowledge, quality of life and cost-effectiveness. The findings indicate that the innovative models of healthcare we identified in this review may be effective in managing patients with a range of acute and chronic conditions. Most of the included reviews reported evidence of comparable or improved care. CONCLUSIONS: A consideration of local infrastructure and individual patient characteristics, such as health literacy, may be critical in determining the suitability of models of care for patients and their implementation in local health systems. TRIAL REGISTRATION NUMBER: 10.17605/OSF.IO/PS6ZU.

What do consumer and providers view as important for integrated care? A qualitative study.

BACKGROUND: Integrated care is a model recognised internationally, however, there is limited evidence about its usability in the community. This study aimed to elicit community and provider views about integrated care and how implementation could meet their healthcare needs in a new hospital. METHODS: Using a qualitative approach, consumer and provider views on the strengths, barriers and enablers for integrated care were collected via a series of online workshops and supplementary interviews. RESULTS: A total of 22 consumers and 49 providers participated in 11 focus groups; all perceived integrated care to be an accessible and efficient model that offers a high level of care which enhanced staff and patient well-being. Providers expressed concerns about longer waiting times and safety risks associated with communication gaps and insufficient staff. Enablers include supporting consumers in navigating the integrated care process, co-ordinating and integrating primary care into the model as well as centralising patient electronic medical records. DISCUSSION: Primary, tertiary and community linkages are key for integrated care. Successful interoperability of services and networks requires an investment in resources and infrastructure to build the capability for providers to seamlessly access information at all points along the patient pathway. CONCLUSION: Integrated care is perceived by consumers and providers to be a flexible and patient-focused model of healthcare that offers benefits for a hospital of the future.

The more you do it, the easier it gets: using behaviour change theory to support health care professionals offering reproductive genetic carrier screening.

Recent advances in genomic sequencing have improved the accessibility of reproductive genetic carrier screening (RGCS). As awareness and interest grows, non-genetic health care professionals are increasingly offering RGCS to consumers. We conducted a qualitative interview study informed by behaviour change theory to identify influences on health care professionals considered as 'early adopters' offering RGCS through Mackenzie's Mission, an Australian national research study investigating the implementation of free RGCS to couple's preconception or in early pregnancy. Interviews were deductively analysed using the Theoretical Domains Framework to examine barriers and enabling factors. In total, we interviewed 31 health care professionals, who were primarily general practitioners (n = 23) offering RGCS through Mackenzie's Mission. Upon analysis, 15 barriers and 44 enablers to implementation were identified and categorised across three health care professional target behaviours 1. Engaging with RGCS, 2. Identifying eligible patients, and 3. Offering RGCS. Whilst all Theoretical Domains Framework domains were present, barriers were predominantly categorised as 'Environmental Context and Resources' e.g., lack of time, followed by 'Knowledge' e.g., lack of understanding about genetics and 'Beliefs about Capabilities' e.g., concern about giving high risk results to patients. Although health care professionals expressed a preference for offering RGCS through a comprehensive and supported model of care, such as Mackenzie's Mission, barriers remain. By understanding what drives current health care professionals' behaviour towards offering RGCS, behaviour change theory provides an avenue to direct future efforts based on evidence and improve service delivery.

Needs of people with rare diseases that can be supported by electronic resources: a scoping review.

OBJECTIVES: Rare diseases are characterised by low incidence, often with little evidence for effective treatments. Isolated patients and specialist centres for rare diseases are increasingly connected, thanks to the internet. This scoping review aimed to identify issues facing people with a rare disease that authors report may be addressed by electronic resources (mobile applications, websites, social media platforms, telehealth and online portals). DESIGN: Scoping review guided by the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. DATA SOURCES: Medline, Embase and PsycInfo were searched, supplemented by hand searches of selected journals, in July 2021. ELIGIBILITY CRITERIA: Peer-reviewed literature in English was searched using terms for rare disease (incidence <1:2000), electronic modalities (eg, mobile phone) and patient support terms. No date limit was set. Conference abstracts were included. DATA EXTRACTION AND SYNTHESIS: Data extracted: rare disease/group of diseases, name of the e-resource, need identified in the patient cohort, features of the e-resource, any other findings or observations of interest. From this, a framework was developed synthesising features across diseases and resources. RESULTS: Seventy-two papers were found (from 383). Fifty-six electronic resources were described in 64 papers, while 12 papers were exploratory studies. Cystic fibrosis (n=28) was the most frequently addressed, followed by haemophilia (n=16).Four domains and 23 subdomains of needs were extracted from the papers. The domains of needs were: support for self-management, access to high-quality information, access to appropriate specialist services, and social support. Subdomains are sometimes related to needs of individual rare diseases (eg, social isolation due to infection risk in people with cystic fibrosis). Fifteen electronic resources were identified that supported parents of children with rare disorders. CONCLUSIONS: While it can be argued that rare diseases, per se, may be no less distressing or onerous to care for than a high prevalence disease, rare diseases have unique features: the lengthy odyssey to find a diagnosis, then appropriate specialists, the lack of evidence around effective treatments, guidelines or access to knowledgeable general health service providers. Designers of electronic resources are urged to consult key stakeholders to enhance the effectiveness and usability of resources for people with a rare disease.

Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale.

BACKGROUND: Mobile apps are becoming increasingly popular, with 5.70 million apps available in early 2021. Smartphones can provide portable and convenient access to health apps. Here, we consider apps for people with one of the estimated 7000 rare conditions, which are defined as having an incidence of <1 in 2000. The needs of people with rare conditions are known to be different from those of people with more common conditions. The former may be socially isolated (not knowing anyone else who has the condition) and may not be able to find reliable information about the disorder. OBJECTIVE: The aim of this review is to search for apps developed specifically for people diagnosed with a rare disease and to assess them for quality using the Mobile App Rating Scale (MARS). We examine features that address 6 identified needs of people with a rare disorder and make recommendations for future developers. METHODS: Google Play Store (Android) and Apple App Store (iOS) were searched for relevant health-related apps specifically for rare diseases. The search included the names of 10 rare disease groups. App quality was determined using MARS, assessing app engagement, functionality, aesthetics, and information. RESULTS: We found 29 relevant apps (from a total of 2272) addressing 14 rare diseases or disease groups. The most common rare conditions addressed were cystic fibrosis (n=6), hemophilia (n=5), and thalassemia (n=5). The most common app features were web-based information and symptom trackers. The mean MARS score was 3.44 (SD 0.84). Lowest scores were for engagement. CONCLUSIONS: Most apps provided factual and visual information, providing tools for self-monitoring and resources to help improve interactions during health consultations. App origin and quality varied greatly. Developers are recommended to consider ways to make appropriate apps more easily identifiable to consumers, to always include high-quality information, improve engagement, provide qualitative evaluations of the app, and include consumers and clinicians in the design.

The Application of e-Mental Health in Response to COVID-19: Scoping Review and Bibliometric Analysis.

BACKGROUND: The COVID-19 pandemic and its mitigation measures and impacts, such as shelter-in-place orders, social isolation, restrictions on freedoms, unemployment, financial insecurity, and disrupted routines, have led to declines in mental health worldwide and concomitant escalating demands for mental health services. Under the circumstances, electronic mental health (e-mental health) programs and services have rapidly become the "new normal." OBJECTIVE: The aim of this study was to assess key characteristics and evidence gaps in the e-mental health literature published in relation to the COVID-19 pandemic via a scoping review and bibliometric analysis. METHODS: We conducted a search of four academic databases (ie, MEDLINE, Embase, PsycInfo, and CINAHL) for documents published from December 31, 2019, to March 31, 2021, using keywords for e-mental health and COVID-19. Article information was extracted that was relevant to the review objective, including journal, type of article, keywords, focus, and corresponding author. Information was synthesized by coding these attributes and was then summarized through descriptive statistics and narrative techniques. Article influence was examined from Altmetric and CiteScore data, and a network analysis was conducted on article keywords. RESULTS: A total of 356 publications were included in the review. Articles on e-mental health quickly thrived early in the pandemic, with most articles being nonempirical, chiefly commentaries or opinions (n=225, 63.2%). Empirical publications emerged later and became more frequent as the pandemic progressed. The United States contributed the most articles (n=160, 44.9%), though a notable number came from middle-income countries (n=59, 16.6%). Articles were spread across 165 journals and had above-average influence (ie, almost half of the articles were in the top 25% of output scores by Altmetric, and the average CiteScore across articles was 4.22). The network analysis of author-supplied keywords identified key topic areas, including specific mental disorders, eHealth modalities, issues and challenges, and populations of interest. These were further explored via full-text analysis. Applications of e-mental health during the pandemic overcame, or were influenced by, system, service, technology, provider, and patient factors. CONCLUSIONS: COVID-19 has accelerated applications of e-mental health. Further research is needed to support the implementation of e-mental health across system and service infrastructures, alongside evidence of the relative effectiveness of e-mental health in comparison to traditional modes of care.

Systematic review of the factors and the key indicators that identify doctors at risk of complaints, malpractice claims or impaired performance.

OBJECTIVE: To identify the risk factors associated with complaints, malpractice claims and impaired performance in medical practitioners. DESIGN: Systematic review. DATA SOURCES: Ovid-Medline, Ovid Embase, Scopus and Cochrane Central Register of Controlled Trials were searched from 2011 until March 2020. Reference lists and Google were also handsearched. RESULTS: Sixty-seven peer-reviewed papers and three grey literature publications from 2011 to March 2020 were reviewed by pairs of independent reviewers. Twenty-three key factors identified, which were categorised as demographic or workplace related. Gender, age, years spent in practice and greater number of patient lists were associated with higher risk of malpractice claim or complaint. Risk factors associated with physician impaired performance included substance abuse and burn-out. CONCLUSIONS: It is likely that risk factors are interdependent with no single factor as a strong predictor of a doctor's risk to the public. Risk factors for malpractice claim or complaint are likely to be country specific due to differences in governance structures, processes and funding. Risk factors for impaired performance are likely to be specialty specific due to differences in work culture and access to substances. New ways of supporting doctors might be developed, using risk factor data to reduce adverse events and patient harm. PROSPERO REGISTRATION NUMBER: PROSPERO registration number: CRD42020182045.

The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis.

BACKGROUND: The diagnostic odyssey for people with a rare disease is well known, but difficulties do not stop at diagnosis. Here we investigate the experience of people, or parents of children with a diagnosed mitochondrial respiratory chain disorder (MRCD) in the management of their disease. The work complements ongoing projects around implementation of consensus recommendations for management of people with MRCD. People with or caring for a child with a formally diagnosed MRCD were invited to take part in an hour-long focus group held via videoconference. Questions elicited experiences of receiving management advice or information specific to their MRCD in four areas drawn from the consensus recommendations: diet and supplements, exercise, access to social services, and mental health. Sessions were audio-recorded, transcribed and analysed using a combination of inductive and deductive coding. RESULTS: Focus groups were conducted with 20 participants from five Australian states in June-September 2020. Fourteen adults with a MRCD (three of whom also had a child with a MRCD), and six who cared for a child with a MRCD took part. The overarching finding was that of the need for ongoing negotiation to access the advice and service required to manage their condition. The nature of these negotiations varied across contexts but mostly related to joint decision-making, and more commonly, the need to advocate for their care with non-specialist services (e.g., dieticians, schools). The effort required for this self-advocacy was a prominent theme. While most participants reported receiving adequate advice around supplements, and to a lesser extent diet and exercise, the majority reported no formal advice around mental health or practical assistance accessing social services. CONCLUSION: These focus groups have revealed several gaps in the system for people with a MRCD, interacting with care providers after diagnosis. Focus group participants had to negotiate with a range of different stakeholders in order to secure appropriate advice or services. Notable was the gap in appropriate generalist services (e.g., dieticians) with sufficient knowledge of MRCD to support people with their day-to-day challenges.

Health practitioners' perceptions of the barriers and enablers to the implementation of reproductive genetic carrier screening: A systematic review.

BACKGROUND: As interest in reproductive genetic carrier screening rises, with increased availability, the role of healthcare practitioners is central in guiding uptake aligned with a couples' values and beliefs. Therefore, practitioners' views on implementation are critical to the success of any reproductive genetic carrier screening programme. AIM: To explore healthcare practitioners' perceptions of the barriers and enablers to implementation. MATERIALS & METHODS: We undertook a systematic review of the literature searching seven databases using health practitioner, screening and implementation terms returning 490 articles. RESULTS: Screening led to the inclusion of 26 articles for full-text review. We found three interconnected themes relating to reproductive genetic carrier screening: (i) use and impact, (ii) practitioners' beliefs and expectations and (iii) resources. DISCUSSION: Barriers and enablers to implementation were present within each theme and grouping these determinants by (a) community for example lack of public interest, (b) practitioner for example lack of practitioner time and (c) organisation for example lack of effective metrics, reveals a preponderance of practitioner barriers and organisational enablers. Linking barriers with potential enablers leaves several barriers unresolved (e.g., costs for couples) implying additional interventions may be required. CONCLUSION: Future research should draw on the findings from this study to develop and test strategies to facilitate appropriate offering of reproductive genetic carrier screening by healthcare practitioners.