Dataset Information

The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys.

ABSTRACT: The ongoing coronavirus disease 2019 (COVID-19) pandemic has caused disruption in all aspects of daily life, including the management and treatment of rare inherited metabolic disorders (IMDs). To perform a preliminary assessment of the incidence of COVID-19 in IMD patients and the impact of the coronavirus emergency on the rare metabolic community between March and April 2020, the European Reference Network for Hereditary Metabolic Diseases (MetabERN) has performed two surveys: one directed to patients' organizations (PO) and one directed to healthcare providers (HCPs). The COVID-19 incidence in the population of rare metabolic patients was lower than that of the general European population (72.9 × 100,000 vs. 117 × 100,000). However, patients experienced extensive disruption of care, with the majority of appointments and treatments cancelled, reduced, or postponed. Almost all HCPs (90%) were able to substitute face-to-face visits with telemedicine, about half of patients facing treatment changes switched from hospital to home therapy, and a quarter reported difficulties in getting their medicines. During the first weeks of emergency, when patients and families lacked relevant information, most HCPs contacted their patients to provide them with support and information. Since IMD patients require constant follow-up and treatment adjustments to control their disease and avoid degradation of their condition, the results of our surveys are relevant for national health systems in order to ensure appropriate care for IMD patients. They highlight strong links in an interconnected community of HCPs and PO, who are able to work quickly and effectively together to support and protect fragile persons during crisis. However, additional studies are needed to better appreciate the actual impact of COVID-19 on IMD patients' health and the mid- and long-term effects of the pandemic on their wellbeing.

SUBMITTER: Lampe C

PROVIDER: S-EPMC7711270 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundMany surveys have been performed over the years to assess the medical and social requirements of patients with a rare disease, but no studies have focused specifically on patients in Europe or with an inherited metabolic disease (IMD). To obtain a comprehensive overview of the social and psychological status and needs of IMD patients, especially in Europe, the European Reference Network for Hereditary Metabolic Disorders (MetabERN) has performed a dedicated survey among its metabolic patients.ResultsA total of 924 patients and caregivers responded to the questionnaire. Most participants were from 25 European countries, with Spain, Italy, and Germany being the most represented; only eight participants were extra-European. The survey showed that most social assistance services, from free educational/development services for those with intellectual disability to transition from childhood to adult care and job placement support, are available for a limited number of patients or are unknown to the majority of patients or their parents/caregivers. Similarly, psychological assistance for the patient or the parent/caregiver is available for a small fraction of respondents, despite the fact that the majority considers this type of support necessary for both the patient and the caregiver. In addition, for most IMD patients local specialised or emergency medical assistance is lacking, although national clinical pathways are defined, and medical professionals of reference are readily available when needed. Lastly, while most national health services in Europe cover all or part of the expenses for medications, medical devices, food supplements, dietary integrators, physiotherapy, and speech therapy, significant gaps in the economic support for healthcare and other expenses still exist.ConclusionsOverall, our survey reveals a widespread lack of social, psychological, and economic support for IMD patients in Europe. More needs to be done to provide daily assistance to IMD patients in order to alleviate the burden on caregivers and to allow patients to become independent and productive adults. Where support is actually available locally or nationally, most IMD patients are not aware of it, so an active dissemination of this information among the metabolic community is essential.

Project description:BACKGROUND:DOLCE (Improving Decision making On Location of Care with the frail Elderly and their caregivers) was a post-intervention clustered randomised trial (cRT) to assess the effect of training home care teams on interprofessional shared decision-making (IP-SDM). Alongside the cRT, we sought to monitor healthcare providers' level of behavioural intention to engage in an IP-SDM approach and to identify factors associated with this intention. METHODS:We conducted two cross-sectional surveys in the province of Quebec, Canada, one each at cRT entry and exit. Healthcare providers (e.g. nurses, occupational therapists and social workers) in the 16 participating intervention and control sites self-completed an identical paper-based questionnaire at entry and exit. Informed by the Integrated model for explaining healthcare professionals' clinical behaviour by Godin et al. (2008), we assessed their behavioural intention to engage in IP-SDM to support older adults and caregivers of older adults with cognitive impairment to make health-related housing decisions. We also assessed psychosocial variables underlying their behavioural intention and collected sociodemographic data. We used descriptive statistics and linear mixed models to account for clustering. RESULTS:Between 2014 and 2016, 271 healthcare providers participated at study entry and 171 at exit. At entry, median intention level was 6 in a range of 1 (low) to 7 (high) (Interquartile range (IQR): 5-6.5) and factors associated with intention were social influence (??=?0.27, P?<? 0.0001), beliefs about one's capabilities (??=?0.43, P?<? 0.0001), moral norm (??=?0.31, P?<? 0.0001) and beliefs about consequences (??=?0.21, P?<? 0.0001). At exit, median intention level was 5.5 (IQR: 4.5-6.5). Factors associated with intention were the same but did not include moral norm. However, at exit new factors were kept in the model: working in rehabilitation (??=?-?0.39, P?=?0.018) and working as a technician (??=?-?0.41, P?=?0.069) (compared to as a social worker). CONCLUSION:Intention levels were high but decreased from entry to exit. Factors associated with intention also changed from study entry to study exit. These findings may be explained by the major restructuring of the health and social care system that took place during the 2 years of the study, leading to rapid staff turnover and organisational disturbance in home care teams. Future research should give more attention to contextual factors and design implementation interventions to withstand the disruption of system- and organisational-level disturbances. TRIAL REGISTRATION:Clinicaltrials.gov (NCT02244359). Registered on September 19th, 2014.

Project description:BackgroundPatient feedback after contact with a hospital is regarded as an important source of information for the improvement of local healthcare services. Routine patient surveys are in widespread use to obtain such feedback. While general principles for the composition of this kind of surveys have been described in the literature, it is unknown which method of contact and topics of feedback are important to patients in postcontact healthcare surveys.Material and methodsWe invited 2931 consecutive patients who had in- or outpatient contact with the Department of Orthopaedics and Traumatology at the University Hospital Basel to an anonymous survey. They were asked whether they were generally in favor of feedback surveys. They also had the opportunity to state their preferred form of contact (text message, app, email, online or letter) and provide up to three topics that they regarded as specifically important in patient surveys.ResultsA total of 745 patients participated in the survey (25.4%), of these 61.9% expressed the preference to be surveyed, and 69.1% selected `letter' as one of the preferred forms of contact. Favoring only `letter' contact increased substantially with age. Overall 54.6% of patients stated at least one topic that they wished to give feedback on. The most frequent topics were related to treatment and rather general aspects regarding staff and overall impression. The wish to include suggestions for improvements was rarely mentioned as specific topic.ConclusionsThe majority of patients seem to be rather indifferent to the existence and content of patient surveys. They mention a wide range of topics from general to specific ones, but do not express interest in the opportunity to suggest changes. There is a need to effectively engage patients in healthcare planning using new approaches to obtain valuable feedback on patients' hospital stay and contact experiences. These new approaches should ideally be more informative and cost-effective than the current practice.

Project description:BackgroundThe UK's "Getting It Right First Time" programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes.AimTo profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia.MethodsTwo online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data.ResultsSurvey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: 'a troublesome label', 'a heavy burden' and 'a low priority'. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK.ConclusionThis study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.

Dataset Information

The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets