Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

Background Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants’ perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction. Methods Guided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants’ PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training. Results A total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding “levels of engagement” (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants’ ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either “satisfied” or “very satisfied” with the training program. Conclusions Overall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items. Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).

Self-care Status and Influencing Factors of Patients with Chronic Heart Failure in Community from The Perspective of Health Ecology

Objective To explore the current situation and influencing factors of self-care of patients with chronic heart failure in community. Methods Patients with chronic heart failure in four community health service centers of a third class hospital in Nanjing were selected as the research object. A questionnaire was formed based on health ecology to understand the current situation and influencing factors of self-care. The data were analyzed by one-way ANOVA and multiple linear regression.Results The self-care status of community patients with chronic heart failure was poor, and they were in the state of "low maintenance, low management and low confidence"; Social support level, anxiety, depression, number of complications, course of disease, education level and income were independent influencing factors of self-care ability of community patients with chronic heart failure (P < 0.05). Conclusion The self-care ability of community patients with chronic heart failure needs to be improved, which is affected by many factors. Personalized evaluation and active intervention should be carried out to improve the self-care ability and quality of life of patients with chronic heart failure.

Carriage Prevalence of Extended-Spectrum β-Lactamase Producing Enterobacterales in Outpatients Attending Community Health Centers in Blantyre, Malawi

Antimicrobial resistance due to extended-spectrum β-lactamase (ESBL) production by Enterobacterales is a global health problem contributing to increased morbidity and mortality, particularly in resource-constrained countries. We aimed to determine the prevalence of extended-spectrum β-lactamase-producing Enterobacterales (ESBL-E) in community patients in Blantyre, Malawi. Clinical samples were collected from 300 patients and screened for ESBL-E using a CHROMagarTM ESBL medium. Confirmation of ESBL production was done by a combination disk test (CDT). The prevalence of community-acquired ESBL-E was 16.67% (50/300, 95% CI = 12.43–20.91%). The most common ESBL-E species isolated was Escherichia coli (66%). All ESBL-E isolates were resistant to Trimethoprim-Sulfamethoxazole except for 2% of E. coli. Besides this, all ESBL-E were susceptible to Imipenem and only 4% were resistant to Meropenem. No patients with a positive ESBL-E phenotype had a history of hospital admission in the last three months, and the carriage of ESBL-E was neither associated with the demographic nor the clinical characteristics of participants. Our findings reveal a low presence of ESBL-E phenotypes in community patients. The low prevalence of ESBL-E in the community settings of Blantyre can be maintained if strong infection and antimicrobial use-control strategies are implemented.

The correlation between the labrum size and the labral tear in asymptomatic volunteers and symptomatic patients

Background Some studies have proved that labrum size is associated with symptoms in patients with hip labral tear. The correlation between the labrum size and the labral tear in asymptomatic volunteers and symptomatic patients is still uncertain. Methods The volunteers with no history of pain, injury, or surgery were recruited from the community. Patients who were diagnosed with labral tear and underwent hip arthroscopic surgery in this period in our hospital were also included. The length and height of the acetabular hip labrum were measured at three separate anatomic sites through magnetic resonance imaging (MRI) along the acetabular rim: lateral, anterior, and anteroinferior. Results A total of 70 volunteers (125 hips) and 70 patients (70 hips) were included in this study. Sixty-six (52.8%) hips had labral tears in all 125 hips of volunteers. The lateral labral length of volunteers with labral tears was significantly larger than those without labral tears (P < .05). In 14 volunteers with unilateral labral tears, length of lateral, anterior, and anteroinferior labrum in the side with tear were significantly larger than normal on the other side. The anterior labral height of volunteers was significantly larger than that of patients (P < .05). Conclusions In conclusion, asymptomatic volunteers with larger length of lateral, anterior, and anteroinferior labrum are more prone to present with labral tears. Symptomatic patients with labral tears exhibited thinner anterior labrum. Further studies are warranted to explore the mechanisms of labral tears in asymptomatic people and validate the use of labral size as a guide to differential diagnosis and treatment.

Lack of association between patients characteristics and carriage of extended-spectrum β-lactamase producing Enterobacteriaceae in community settings in Blantyre, Malawi

Background: Infections caused by extended-spectrum β-lactamase (ESBL) producing bacteria are global health threat contributing to increased morbidity and mortality in resource-constrained countries. This cross sectional study examined factors associated with the carriage of ESBL-producing Enterobacteriaceae (ESBL-E) in community patients in Blantyre, Malawi. Methods: We collected rectal swabs and urine samples from randomly recruited participants and screened for ESBL-E on CHROMagarTM ESBL medium (CHROMagar, Paris, France). The ESBL-E isolates were identified using commercially acquired biochemical strips (Microbact™ GNB, Oxoid, UK) and production of ESBL was confirmed by the combination disk test using cefotaxime and ceftazidime disks with and without clavulanic acid. Antibiotic susceptibility test was done by the disc diffusion method and interpreted according to the recommendations of the Clinical and Laboratory Standards Institute (CLSI) 2019. Univariate logistic regression was used to evaluate association between ESBL-E carriage and the assosiated factors. To quantify relationships, dichotomous variables were compared using Pearson’s chi-square test or Fisher exact test as appropriate and continuous variables were compared using the Student’s t-test. Results were expressed as odds ratio (OR) with a 95% confidence intervalResults A total of 50 community patients with ESBL-E phenotypes were identified from 300 adults recruited in the study, which gave a ESBL-E prevalence of 16.67% (50/300, 95% CI=12.43-20.91%). The mean age ±SD of participants was 32.41±12.07 years; range, 18-75 years and 54.33% (163/300) were women. on unadjusted logistic regression, no association between carriage of ESBL-E and community patient characteristics was observed.Conclussions The carriage of ESBL-E is prevalent in the community in Blantyre-Malawi. Nevertheless, factors associated with this carriage remain unidentified. Further investigations including large case-control and molecular studies using one health approach are required to confirm community-based transmission of ESBLs and to determine the factors, reservoirs and vehicles associated with the dissemination of ESBL within the community in Blantyre, Malawi.

Obveze i odgovornosti pacijenata u hrvatskom pravu

When talking about responsibility in health care, first of all, it refers to the responsibility of health care institutions and health care workers, in regards to the harm they have caused their patients through malpractice, as well as to the insurance against liability of health care workers for any mistakes in their work. An equally important area of responsibility is responsibilities of patients for their actions or omissions. In the paper, the author has classified these through four segments: patient responsibility for their health; patient responsibility to other patients; patient responsibility to healthcare professionals; and patient responsibility to the community. Patients’ rights in the Republic of Croatia are regulated by the Law on the Protection of Patients' Rights and the Law on Health Care, in a way, in which they prescribe only the rights of patients and, above all, the obligations and responsibilities of patients. Therefore, house rules of hospitals are the only regulations that systematically regulate patients' obligations and responsibilities, most of all or only those who are hospitalized in stationary healthcare institution.

‘You see the empty bed which means it’s either a transplant or a death’: a qualitative study exploring the impact of death in the haemodialysis community

ObjectiveTo explore the impact of the death of a patient in the haemodialysis unit on fellow patients.MethodsWe interviewed patients on dialysis in a tertiary dialysis centre using semistructured interviews. We purposively sampled patients who had experienced the death of a fellow patient. After interviews were transcribed, they were thematically analysed by independent members of the research team using inductive analysis. Input from the team during analysis ensured the rigour and quality of the findings.Results10 participants completed the interviews (6 females and 4 males with an age range of 42–88 years). The four core themes that emerged from the interviews included: (1) patients’ relationship to haemodialysis, (2) how patients define the haemodialysis community, (3) patients’ views on death and bereavement and (4) patients’ expectations around death in the dialysis community. Patients noticed avoidance behaviour by staff in relation to discussing death in the unit and would prefer a culture of open acknowledgement.ConclusionStaff acknowledgement of death is of central importance to patients on haemodialysis who feel that the staff are part of their community. This should guide the development of appropriate bereavement support services and a framework that promotes the provision of guidance for staff and patients in this unique clinical setting. However, the authors acknowledge the homogenous sample recruited in a single setting may limit the transferability of the study. Further work is needed to understand diverse patient and nurse experiences and perceptions when sharing the knowledge of a patient’s death and how they react to loss.