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Developing a minimum dataset for a national patient registry on Long COVID in Canada: a Delphi consensus-based study

Por: Mazurik · K. · Amah · A. · Dumitrescu · D. I. · Ejalonibu · H. · Chavda · B. · Kemp · D. · Frederick · D. E. · Mclean · C. · Decary · S. · Gruneir · A. · Halas · G. · Hoens · A. · Kho · M. · Long COVID Web · Groot · G. · Bhereur · Cao · Cheung · Decary · Grant · Gruneir · Halas · Hoens · Kh
Objectives

To develop survey items for a national patient registry on Long COVID using a modified Delphi process.

Design

This study was based on a modified Delphi process involving three rounds of anonymous, online surveys to develop consensus on and prioritise survey elements to be included in a minimum dataset for use in a national patient registry in Canada. Initial Long COVID items were identified through an environmental scan of the literature.

Setting

This study focused on healthcare systems in Canada and was conducted online.

Participants

A panel of 52 experts (patients, caregivers, clinicians and researchers) participated in all three rounds of the online survey. These participants were recruited through the Long COVID Web network and word of mouth.

Results

In total, 243 survey elements related to care, quality of life and symptoms were included in round 1 of the survey. 200 reached consensus and moved to round 2 with two additional elements being developed based on open-ended responses. In round 2, participants ranked these survey elements and 34 advanced. In round 3, 33 survey elements met the threshold of consensus with one added a priori. The 33 survey elements were then used to develop a Long COVID minimum dataset, which consists of 48 items.

Conclusions

The findings affirm broad consensus for collecting data related to fatigue, post-exertional malaise, cardiovascular issues, respiratory problems and cognitive issues. This highlighted the desire for quality-of-life indicators and information related to care utilisation, quality and access.

Frequency of reported abuse, stigma and discrimination during facility-based childbirth among migrant mothers and their suggestions for improvement: a mixed method WHO standards-based multicentre study in Italy

Por: Mariani · I. · Covi · B. · Valente · E. P. · Lazzara · G. · Not · S. · Casetta · G. · Manfrida · M. M. · Bua · J. · Piazza · M. · Zanetti · A. · Moretti · V. · Giornelli · R. · Battistin · S. · Miani · M. P. · Pecci · L. · Pizzocchero · E. · Fabiani · C. · Michelutti · A. · Pertner · V. · Sa
Objectives

This study aims at documenting the frequency of reported abuse, stigma and discrimination and exploring the perspectives for improving the quality of maternal-newborn care (QMNC) of migrant mothers’ reporting abuse, stigma or discrimination.

Design

Mixed methods multicentre cross-sectional study.

Setting

All maternal facilities (tertiary and secondary levels of care, n=9) from Friuli-Venezia Giulia region, Northeast Italy, between November 2019 and January 2022 in Northeast Italy.

Participants

874 migrant and 3968 non-migrant women answering a validated WHO Standard-based questionnaire after birth.

Outcome measures

Frequency of reported abuse, stigma and discrimination during facility-based childbirth was calculated and compared with those of non-migrant mothers. Thematic analysis was conducted on eight open questions, using WHO Standards as a framework for the analysis.

Results

Among migrant women, 84 (9.6%) reported some type of abuse, stigma and discrimination, a frequency similar to non-migrant women (9.8%, p=0.880). The most frequently reported was verbal abuse (87.7%), followed by stigma and discrimination (15.1%). Most women (86.9%) provided at least one comment, with a frequency comparable to non-migrant women (p=0.076). Among a total of 327 comments, 104 (31.8%) were practical suggestions for improving QMNC. Experience of care was the domain with the highest frequency both of negative (64.9% of negative comments) and positive comments (51.7% of positive comments) and with the highest frequency of suggestions for improving QMNC (52.9% of suggestions). Overall, suggestions mainly focused on strengthening healthcare professionals’ communication skills, allowing companionship during childbirth, increasing healthcare professionals’ availability and timely support.

Discussions

This study shows that both migrant and non-migrant mothers are exposed to abuse, stigma and discrimination during childbirth, and that both are willing to provide practical suggestions, which should be used for planning actions to improve QMNC.

Modified Mediterranean diet effects on Parkinsons disease (MED-PARK): a single-centre randomised controlled trial protocol

Por: Pirovano · E. · Marino · F. · Rossi · E. · Gennari · A. · Rasini · E. · Uslenghi · M. · Figueira · I. · Iacoviello · L. · Ferrari · M. · Cosentino · M.
Introduction

Only symptomatic treatments are available for patients with Parkinson’s disease (PD), the second most common chronic neurodegenerative disease worldwide, and it is therefore imperative to identify disease-modifying interventions that can alter the course of the disease. Epidemiological studies in PD patients suggest that a Mediterranean diet is associated with better motor and non-motor symptoms, slower progression and reduced mortality. Few interventional studies, however, investigated the relationship between diet and PD severity and progression. This study aims to determine whether a Mediterranean nutritional intervention can benefit motor and non-motor symptoms experienced by PD patients. As a secondary aim, the effects of a modified Mediterranean diet on the immune system, metabolomics and microbiome will also be assessed.

Methods and analysis

This is an interventional, non-pharmacological, superiority, randomised, controlled, single-centre, masked study with two parallel groups to evaluate the efficacy and safety of a modified Mediterranean diet on motor and non-motor patient-reported symptoms. PD patients meeting inclusion criteria will be enrolled (44 participants, aged between 40 years and 85 years), block-randomised and split into two parallel arms to either maintain their usual diet (control) or follow a modified Mediterranean diet for 6 months (intervention).

Patient-reported symptomatology is the primary outcome, measured through the Movement Disorders Society Unified PD Rating Scale (MDS-UPDRS) I+II score. Secondary outcomes include the immunophenotype of circulating cells of the adaptive immune system, the nasal and faecal microbiome composition, faecal and urinary metabolites and the measurement of inflammatory and metabolic markers. Disease severity (MDS-UPDRS III), non-motor symptomatology (Non-Motor Symptoms Scale), participant’s well-being (36-Item Short Form Health Survey), gastrointestinal symptomatology (Gastrointestinal Symptom Rating Scale and the Patient Assessment of Constipation Quality of Life) and intensity of dopaminergic replacement therapy (levodopa equivalents) will also be assessed. Evaluations will be conducted before the start and at the end of the intervention.

Ethics and dissemination

The Ethical Committee ‘Comitato Etico Territoriale Lombardia 5’ first approved this study on 17 September 2024 Prot. Nr. 420/24. Findings will be disseminated via peer-reviewed research papers and conference presentations.

Trial registration number

NCT06705517.

From unconditionality to disenchantment among primary healthcare professionals during the COVID-19 pandemic: a qualitative study from Madrid, Spain

Objectives

To explore the experience of primary healthcare (PHC) professionals in their professional role during the pandemic and to describe collective coping strategies.

Design

We conducted a qualitative study using interviews, focus groups and photovoice techniques from February to September 2021. The qualitative data were transcribed, aggregated and analysed, from a hermeneutic perspective, using applied thematic analysis and ethnographic approaches.

Setting

Primary Care Health Madrid region (Spain).

Participants

Convenience sampling was used to select 71 multidisciplinary primary care professionals who were working in 12 PHCs representing diverse socioeconomic, social vulnerability and COVID impact levels in the Madrid region (Spain).

Results

Findings from this study show how lack of protection in the early days, uncertainty about how the disease would evolve and the daily challenges they faced have had an impact on the participants’ perceptions of their professional role. Nuanced differences in impact were found between men and women, age groups, professional roles and territories. The questioning of the basic foundations of primary care and the lack of prospects led to a feeling of demotivation. They perceive a wide gap between their levels of involvement and commitment, the recognition they receive and the attention to resources they need to do their work to a high standard. The support of their colleagues was seen as the most valuable resource for coping with the crisis.

Conclusions

The practitioners’ discourses offer knowledge that could help to face new global health threats; they also identify an urgent need to restore the role and motivation of PHC professionals as part of a wider regeneration of health systems.

Correlation between fatigue and pulmonary involvement in the post-COVID-19 condition: a cross-sectional study 6-12 months after hospital discharge

Por: Kajiwara · M. S. · Lamas · C. A. · Luna · L. A. V. d. · Yokoyama · T. S. · de Oliveira · P. R. · Chate · R. C. · Sawamura · M. V. Y. · Imamura · M. · Carvalho · C. R. R. d. · Salge · J. M. · HCFMUSP COVID-19 task force · Araujo · Segurado · Montal · Miethke-Morais · Levin · Peron
Introduction

Post-COVID-19 conditions (PCC) may include pulmonary sequelae, fatigue and other symptoms, but its mechanisms are not fully elucidated.

Objective

This study investigated the correlation between fatigue and the presence of pulmonary abnormalities in PCC patients with respiratory involvement 6–12 months after hospitalisation.

Design

Cross-sectional study.

Setting

A tertiary hospital in Brazil.

Participants

315 patients, aged ≥18 years, were considered eligible based on SARS-CoV-2 infection confirmed by reverse transcription-PCR.

Methods

Pulmonary function tests (PFT), cardiopulmonary exercise tests (CPET), chest CT and hand grip were performed. The following scales were applied: Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale, Euroqol 5 Dimensions quality of life (EQ-5D) and Hospital Anxiety and Depression Scale (HADS). Participants were divided between the fatigue group (FACIT-F≤30) and the non-fatigue group (FACIT-F>30). For the statistical analysis, the primary outcome was the difference in the diffusing capacity of the lungs for carbon monoxide (DLCO) between groups. Considered secondary outcomes were differences in PFT, CPET, chest CT, hand grip, EQ-5D and HADS.

Results

The fatigue group had 81 patients (25.7%) against 234 (74.3%). PFT and CPET showed no significant difference in DLCO and oxygen consumption peak values between groups. The fatigue group had a lower workload (mean 55.3±21.3 watts vs 66.5±23.2 watts, p=0.003), higher breathing reserve (median 41.9% (33.8–52.5) vs 37.7% (28.9–47.1), p=0.028) and lower prevalence of ground glass opacity (60.8% vs 77.7%, p=0.003) and reticulation (36.7% vs 54.9%, p=0.005) in chest CT. The fatigue group had higher anxiety (57% vs 24%, p

Conclusion

Fatigue in patients with PCC 6–12 months after hospitalisation is relatively common and had weak correlation with pulmonary disorders. Our results suggested fatigue could be strongly related with peripheral disorders such as reduced musculoskeletal strength or psychosocial limitations.

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