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Timely Implementation of Patient‐Reported Outcomes in Clinical Care: Insights From Clinicians and Health Informatics Experts

ABSTRACT

Aim

To explore the optimal timing of patient-reported outcome assessment, defined as the collection and use of patient-reported outcomes at clinically meaningful points such as before or during encounters, treatment initiation and follow-up, and to identify the facilitators and barriers to timely use.

Design

A qualitative analysis of semi-structured interviews with healthcare professionals across diverse US health systems.

Methods

Thematic analysis was used to identify key themes related to the timing and implementation of patient-reported outcomes assessments. Interviews were analysed iteratively to develop a coding framework and synthesise overarching themes.

Results

Fourteen healthcare professionals, including nurse practitioners, cardiologists and health informatics experts across seven U.S. health systems from academic and community hospitals, were interviewed in February 2024. Three major themes emerged: (1) value proposition of timely patient-reported outcome data collection (2) key facilitators for timely implementation and (3) multilevel barriers. The value proposition focused on the use of patient-reported outcomes for prevention and active disease management. Critical facilitators for the timely implementation of patient-reported outcomes included the involvement of research and clinical coordinators, strategies for pre-visit and on-site patient-reported outcome collection, the use of standardised templates within EHRs and the alignment of patient-reported outcome collection with patients' long-term treatment goals. Finally, multilevel barriers included time constraints, patient-level challenges (e.g., fatigue, literacy, language) and systemic issues (e.g., technical limitations, lack of reimbursement and unclear guidelines).

Conclusion

Timely collection and use of patient-reported outcomes is critical for improving symptom monitoring and supporting patient-centered clinical decision-making. However, multilevel barriers hinder consistent implementation across health care settings.

Implications for the Profession and/or Patient Care

Integrating patient-reported outcomes into clinical workflows can improve the patient-centeredness of patient-healthcare professional interactions, and provide a more holistic picture of a patient's health status. Addressing barriers to patient-reported outcome implementation, including lack of time, poor health literacy and workflow integration barriers, is crucial for improving clinical outcomes.

Reporting Method

This study adhered to the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist, in accordance with EQUATOR Network guidelines.

Patient or Public Contribution

No patient or public involvement: This study did not include patient or public involvement in its design, conduct or reporting.

Triadic relationships between pasture exposure, gastrointestinal parasites, and hindgut microbiomes in grazing lambs

by Jack Jefferson, Claire Reigate, Alessandra Giacomini, M. Jordana Rivero, Matthew Hitchings, Tamsyn Uren Webster, Konstans Wells

Livestock grazing in confined pastures often means grazing on a less diverse diet than under more natural conditions and increased exposure to gastrointestinal parasites prevailing in these pastures. However, how sward composition influences gut microbiome (GM) diversity and its relationship with parasite burden remains poorly understood. In this study, we analysed the faecal GM of weaned lambs grazing on two distinct sward types (perennial ryegrass and a mixed-species sward) over three consecutive months using 16S rRNA sequencing, in order to assess how microbial diversity and composition are related to environmental conditions and the gastrointestinal nematode (GIN) burden in naturally infected lambs. Sward type and sampling time explained some of the variation in GM alpha diversity and community composition (beta diversity), whereas individual lamb identity accounted for considerably more variation in microbial assemblages. Shifts in the relative abundance of bacterial genera such as Saccharofermentans, Anaerosporobacter, Butyrivibrio in relation to sward type and sampling time suggest mostly adaptive fluctuations in response to diet and pasture condition. Abundance shifts of Negativibacillus, and Candidatus Saccharimonas were also associated with GIN burden, which, in turn, was higher in lambs grazing on mixed swards compared to ryegrass. Our findings add to the growing understanding of how sheep microbiomes vary with pasture management and changes in parasite burden. We highlight that individual identity may shape gut microbiota, and that potential triadic interactions among gastrointestinal parasites, sward exposure, and the gut microbiome underscore the importance of considering host, parasite, and environmental factors collectively when evaluating microbiome dynamics in grazing livestock.

Identification of gestational diabetes mellitus in European electronic healthcare databases: insights from the ConcePTION project

Por: Molgaard-Nielsen · D. · Mitter · V. · Lupattelli · A. · Hoxhaj · V. · Andaur Navarro · C. L. · Hayati · S. · Lopez-Leon · S. · Morris · J. K. · Geldof · A. · Jordan · S. · Leinonen · M. K. · Martikainen · V. · Manfrini · M. · Cammarota · L. · Neville · A. · Barrachina-Bonet · L. · Cave
Objective

To develop and compare algorithms for identifying gestational diabetes mellitus (GDM) across European electronic healthcare databases and evaluate their impact on the estimated prevalence.

Design

Multi-national cohort study using routinely collected electronic healthcare data

Setting

National and regional databases in five European countries (Norway, Finland, Italy, Spain and France), in primary and/or secondary care.

Participants

Pregnancy cohorts resulting in stillbirths or live births between 2009 and 2020, comprising 602 897 pregnancies in Norway, 507 904 in Finland, 374 009 in Italy, 193 495 in Spain and 116 762 in France.

Primary and secondary outcomes

The primary outcome was the prevalence of GDM identified using six algorithms: (1) Only diagnosis; (2) Diagnosis or prescription; (3) Two diagnoses or prescriptions (2DxRx); (4) Diagnosis including unspecified diabetes in pregnancy or prescription (DxRx broad); (5) Diagnosis excluding pre-existing diabetes in pregnancy or prescription; (6) Registration of GDM in a birth registry (BR).

Results

The strictest algorithm (2DxRx) resulted in the lowest GDM prevalence, while the broadest (DxRx broad) resulted in the highest, except in France where it was BR. In the Nordic countries, GDM prevalence varied only slightly by algorithm; greater variations were observed in other countries. The prevalence ranged from 3.5% (95% CI: 3.5% to 3.5%) to 4.6% (95% CI: 4.5% to 4.7%) in Norway; 12.1% (95% CI: 12.0% to 12.2%) to 15.8% (95% CI: 15.7% to 15.9%) in Finland, where prevalence was much higher than elsewhere. The prevalence ranged from 1.3% (95% CI: 1.3% to 1.3%) to 5.4% (95% CI: 5.3% to 5.5%) in Italy; 1.6% (95% CI: 1.5% to 1.7%) to 6.2% (95% CI: 6.1% to 6.3%) in Spain; and 1.7% (95% CI: 1.6% to 1.8%) to 5.8% (95% CI: 5.7% to 5.9%) in France.

Conclusions

In this multinational study, GDM prevalence ranged from 1.3% to 15.8% depending on the algorithm and database. Nordic countries showed smaller differences in prevalence between algorithms, while the other countries showed larger variations, likely due to differences in coding practices, healthcare systems and database coverage.

The persuasiveness of different sources of information on the decision to vaccinate. A cross-sectional study in Germany during the pandemic at the turn of the year 2021/2022

by Susanne Jordan, Sarah Jane Böttger, Sabine Zinn

Health information about vaccinations is communicated via various sources of information and is crucial for vaccination decisions. Information sources such as interpersonal sources, traditional print and digital media as well as social media offer information about the risks and benefits of vaccination. During health crises such as the COVID-19 pandemic was, some information sources provide hanging or contradictory information, alongside with misinformation and disinformation. Little is known about the relationship between the reported persuasiveness of different sources of information for individual vaccination decisions and differences in this between the vaccinated and unvaccinated. Utilizing data from 10,284 participants in the “Corona-Monitoring Nationwide” survey in Germany from winter 2021/22, this study explored the relationship between the persuasiveness of information sources and vaccination decisions, considering socio-demographic and pandemic-related factors. For more than half of respondents, talks with family, friends, and acquaintances were the most convincing. Traditional media like television and radio were reported by 44%. Newspapers/magazines (online or print) and talks with physicians were each found the most convincing by around one third. About one fifth were persuaded by public authority’s flyers or websites. Less than a tenth each was convinced by social media/messenger services, brochures from pharmacies and health insurances, talks with pharmacy staff or online health portals. Significant differences emerged between vaccinated and unvaccinated individuals. Unvaccinated people were four times more likely to report social media and messenger services as convincing compared to vaccinated people. Reporting talks with doctors and flyers/websites from public authorities as very persuasive significantly reduced the likelihood of being unvaccinated. The findings suggest that in future health crises, information should be disseminated through diverse sources, using both traditional and digital media, as well as interpersonal communication. Proactive science communication on social media and messenger services is crucial to counteract misinformation and disinformation.

Research Capability and Influencing Factors Among Clinical Nurses: A Multicentre Cross‐Sectional Study

ABSTRACT

Aim

To evaluate the research capability of clinical nurses in China and identify the determinants associated with their capability.

Background

As nursing evolves into an increasingly independent discipline, the research capability of clinical nurses has become critical for the development of the profession, advancing evidence-based practice and improving patient care quality.

Methods

A multicentre cross-sectional survey was conducted using convenience sampling from September 2023 to February 2024, among clinical nurses in tertiary hospitals across three provinces in China. The Nursing Research Capability Self-Assessment Scale was used to assess the research capability of the nurses. Chi-square tests, one-way analysis of variance and multiple linear regression were used to examine factors associated with research capability. The Strengthening the Reporting of Observational Studies in Epidemiology was followed.

Results

A total of 1074 clinical nurses participated. The mean research capability score was 89.11 ± 27.69, reflecting a moderate level of research capability. However, two dimensions of research questions and literature review received lower scores. Multiple linear regression analysis identified that education level, professional title, administrative position and nursing job title (all p < 0.05) were independent predictors of research capability.

Conclusions

Clinical nurses exhibit moderate research capability, with notable deficiencies in formulating research questions and conducting literature reviews. Key factors influencing research capability include education, professional title, administrative position, and job title. Targeted training and development programmes should address these factors to enhance nurses' research competence and advance nursing science.

Tick phenology, tick-host associations, and tick-borne pathogen surveillance in a recreational forest of East Texas, USA

by Jordan Salomon, Haydee Montemayor, Cassandra Durden, Dorcas Abiara, Rachel E. Busselman, Gabriel L. Hamer, Sarah A. Hamer

Management of tick-borne disease necessitates an understanding of tick phenology, tick-host associations, and pathogen dynamics. In a recreational hotspot outside of one of the largest cities in the United States, we conducted a year of monthly standardized tick drag sampling and wildlife trapping in Sam Houston National Forest, a high use recreation site near Houston in east Texas, US. By sampling 150 wildlife hosts of 18 species, including rodents, meso-mammals, deer, reptiles, and amphibians, we collected 87 blood samples, 90 ear biopsies, and 861 ticks representing four species (Amblyomma americanum, Dermacentor variabilis, Ixodes scapularis and Ixodes texanus). Drag sampling yielded 1,651 questing ticks of three species: A. americanum (921), D. variabilis (10), and I. scapularis (720). Off-host larval A. americanum abundance peaked in July, followed by peak infestations of wildlife, predominantly raccoons, in August. Off-host I. scapularis larvae abundance peaked in spring (March-May), while very few were removed from hosts and only a single I. scapularis nymph was found throughout the study via dragging in June. In contrast, both off-host and on-host adult I. scapularis occurred most frequently in the winter. Overall, tick infections included 25.3% (183/725) with Rickettsia buchneri, 15.5% (112/725) Rickettsia amblyommatis, 8.0% (58/725) Rickettsia tillamookensis, 0.8% (6/725) Rickettsia spp., and a single tick with a hard tick relapsing fever Borrelia spp.; no tick tested positive for Borrelia burgdorferi. Characterizing tick phenology, tick-host associations, and tick-borne bacteria fills important knowledge gaps for the risk of tick-borne diseases in pine-dominated forests of this region.

Developing service models for adult palliative and end of life care for people with a learning disability (The DAPPLE Project): protocol for a mixed-method study

Por: Tuffrey-Wijne · I. · Tilley · E. · Tyler · F. · Islam · Z. · Borgstrom · E. · Jordan · J. · Glover · G. · Wallace · L. · Roberts · C. · Giles · J. · Keagan-Bull · R. · Cresswell · A. · Anderson-Kittow · R.
Introduction

People with a learning disability face significant health and mortality inequalities as well as wider systemic inequities. Challenges in palliative and end of life care (PEOLC) include communication difficulties, lack of involvement in decision-making and multimorbidity. Early identification of PEOLC needs is challenging, impacting timely care planning. The study aims to (1) understand barriers and enablers to providing high-quality, accessible PEOLC for people with a learning disability, and identify effective service delivery models and interventions and (2) improve PEOLC quality and accessibility by developing robust guidance for health and social care services.

Methods and analysis

This is a mixed-methods study guided by the NHS England 2021 Ambitions Framework and adopting the Social Model of Disability. There are four workstreams: (1) a retrospective cohort analysis of the Clinical Practice Research Datalink; (2) a rapid scoping review; (3) field work in four study sites across England, involving (a) interviews with senior leaders and commissioners (n=up to 16) and informal stakeholder engagement conversations; (b) ethnographic case studies with people with a learning disability at the end of life (n=up to 20) and retrospective case reviews of people with a learning disability who have died (n=up to 40), using family and staff interviews and (c) development and piloting of methods for enabling systematic identification of PEOLC need, using experience-based co-design and (4) patient and public involvement (PPI) activities and a co-production group of 10 people with a learning disability to support data analysis and outputs. Data will be analysed using adapted framework analysis methodology. This is an inclusive, co-produced study with significant involvement of advisors and researchers with a learning disability as part of the study team.

Ethics and dissemination

Ethical approval has been obtained for workstreams 1, 3a and 3b. Significant attention has been paid to ensuring informed consent, making adjustments for capacity. Accessible information and consent forms will be used, involving consultees and adhering to the Mental Capacity Act for participants who lack capacity. Data security will follow General Data Protection Regulation rules. Dissemination will include patient exemplars, guidance and various resources, engaging stakeholders through multiple formats.

Study registration

researchregistry10500.

Socioeconomic inequalities in outcomes, experiences and treatment among adults consulting primary care for a musculoskeletal pain condition: a prospective cohort study

Por: Peat · G. M. · Hill · J. C. · Yu · D. · Wathall · S. · Parry · E. · Bailey · J. · Thompson · C. · Jordan · K. P. · The MIDAS Patient Advisory Group · Brown · Dent · Haines · Haines · Southam · Maddison · Sandhu
Objectives

To estimate the direction and magnitude of socioeconomic inequalities in outcome, experience and care among adults consulting for a musculoskeletal pain condition.

Design

Multicentre, prospective observational cohort with repeated measures at three waves (baseline, 3 months and 6 months after index consultation).

Setting

30 general practices in North Staffordshire and Stoke-on-Trent, England.

Participants

1875 consecutive, eligible, consenting patients, aged 18 years and over, presenting with a relevant SNOMED CT-coded musculoskeletal pain condition between September 2021 and July 2022.

Interventions

Standard care.

Primary and secondary outcome measures

Primary outcome was patient-reported pain and function using the Musculoskeletal Health Questionnaire (MSK-HQ score, 0–56). Secondary outcomes were patient experience (overall dissatisfaction with consultation experience, dichotomised) and an indicator of care received (opioid prescription within 14 days of index consultation). Using multilevel models, we examined inequalities in primary and secondary outcomes by area deprivation (Index of Multiple Deprivation derived from patient residential postcode), before and after adjusting for sociodemographic and survey administration variables, clinical case-mix and selected practice-level covariates.

Results

Compared with patients from the least deprived neighbourhoods, patients from the most deprived neighbourhoods had significantly poorer MSK-HQ scores at baseline (mean 22.6 (SD 10.4) vs 27.6 (10.1)). At 6 months, the inequality gap in MSK-HQ score widened (difference in mean score after adjustment for all covariates: 1.94; 95% CI: –0.70 to 4.58). Opioid prescription was more common for patients living in the most deprived neighbourhoods (30% vs 19%; fully adjusted OR: 0.69; 95% CI: 0.44 to 1.08). Only 6% of patients overall reported being dissatisfied with their consultation. Analysis of multiply imputed data produced a similar pattern of findings to complete-case analysis.

Conclusions

Substantial inequalities in the chronicity, severity and complexity of musculoskeletal pain problems are already present at the time of accessing care. Inequalities in pain and function do not reduce after accessing care and may even widen slightly.

Trial registration number

ISRCTN18132064; Results.

Evaluation of a virtual reality-directed brain-gut behavioural treatment inpatient program for patients with inflammatory bowel disease: protocol for a pilot feasibility trial

Por: Gutermuth · B. · Jordan · A. · Hodish · G. · Sturgeon · J. A. · DeJonckheere · M. · Berinstein · J. A. · Sheehan · J. · Bishu · S. · Higgins · P. D. · Cohen-Mekelburg · S.
Introduction

Pain is one of the most bothersome symptoms that affects patients with inflammatory bowel disease (IBD) but is often inadequately treated. Inadequate pain control in the inpatient setting not only impacts patients’ experience but increases opioid use and hospital length of stay. Opioids are often considered first-line treatment for severe pain but are associated with significant morbidity and mortality in IBD. Non-steroidal anti-inflammatory drugs are a non-opioid analgesic option, but concerns regarding their contribution to IBD flares have limited their use. Brain-gut behavioural therapies (BGBT), such as cognitive behavioural therapy, meditation and gut-directed hypnotherapy, are effective for pain management and have a role in the treatment of IBD symptoms. However, the use of BGBT in IBD is challenging, given limited access to behavioural health specialists, especially in the inpatient setting. Virtual reality (VR)-directed BGBT programmes can bridge this gap and enhance pain treatment for inpatients with IBD. Therefore, in this study, we aim to establish feasibility and acceptability for a VR-directed BGBT inpatient programme for patients with IBD.

Methods and analysis

We will recruit 40 patients with IBD who are hospitalised at Michigan Medicine and who endorse IBD-related pain. We will assess patient-reported outcomes (pain rating, IBD-specific symptoms, perceived stress, mood) before and after treatment, cumulative inpatient analgesic requirements and hospital length of stay. Our primary objective will be to establish intervention feasibility defined by the frequency and percentage of enrolled participants that use the VR-directed BGBT inpatient intervention in any capacity. Our secondary objective will be to evaluate intervention acceptability by conducting semistructured interviews with study participants. We will also explore the preliminary effectiveness of VR-directed BGBT on patient-reported outcomes and healthcare utilisation as compared with historic controls.

Ethics and dissemination

The study was approved by the institutional review board of the University of Michigan Medical School on 10 October 2023 (HUM00240999). All human subjects will be required to sign an informed consent document prior to study participation. Study findings will be reported through peer-reviewed publication.

Trial registration number

NCT06188793.

Metabolic Pathways Associated With Obesity and Hypertension in Black Caregivers of Persons Living With Dementia

imageBackground In the United States, Black adults have the highest prevalence of obesity and hypertension, increasing their risk of morbidity and mortality. Caregivers of persons with dementia are also at increased risk of morbidity and mortality due to the demands of providing care. Thus, Black caregivers—who are the second largest group of caregivers of persons with dementia in the United States—have the highest risks for poor health outcomes among all caregivers. However, the physiological changes associated with multiple chronic conditions in Black caregivers are poorly understood. Objectives In this study, metabolomics were compared to the metabolic profiles of Black caregivers with obesity, with or without hypertension. Our goal was to identify metabolites and metabolic pathways that could be targeted to reduce obesity and hypertension rates in this group. Methods High-resolution, untargeted metabolomic assays were performed on plasma samples from 26 self-identified Black caregivers with obesity, 18 of whom had hypertension. Logistic regression and pathway analyses were employed to identify metabolites and metabolic pathways differentiating caregivers with obesity only and caregivers with both obesity and hypertension. Results Key metabolic pathways discriminating caregivers with obesity only and caregivers with obesity and hypertension were butanoate and glutamate metabolism, fatty acid activation/biosynthesis, and the carnitine shuttle pathway. Metabolites related to glutamate metabolism in the butanoate metabolism pathway were more abundant in caregivers with hypertension, while metabolites identified as butyric acid/butanoate and R-(3)-hydroxybutanoate were less abundant. Caregivers with hypertension also had lower levels of several unsaturated fatty acids. Discussion In Black caregivers with obesity, multiple metabolic features and pathways differentiated among caregivers with and without hypertension. If confirmed in future studies, these findings would support ongoing clinical monitoring and culturally tailored interventions focused on nutrition (particularly polyunsaturated fats and animal protein), exercise, and stress management to reduce the risk of hypertension in Black caregivers with obesity.

Association of Gut Microbiota With Fatigue in Black Women With Polycystic Ovary Syndrome

imageBackground Fatigue is a highly prevalent symptom for individuals with polycystic ovary syndrome (PCOS); however, characterization of fatigue and investigation into the gut microbiome—a pathway that may contribute to fatigue—remains inadequately explored in Black women with PCOS. Objectives The purpose of this cross-sectional study was to examine fatigue and its relationship to the gut microbiome in adult Black women with PCOS. Methods Adult Black women with a diagnosis of PCOS were recruited for this cross-sectional study. The Multidimensional Fatigue Inventory-20 (MFI-20) and the PROMIS Fatigue Short Form were used to measure fatigue. The V3/V4 region of the bacterial 16S rRNA gene was sequenced to investigate gut microbial composition. Relative abundance and diversity values were calculated. Results We found that Black women with PCOS experience mild to moderate levels of fatigue. An inverse relationship between fatigue scores and alpha diversity values was found for the gut microbiome. We also found distinct beta diversity profiles based on fatigue. Lastly, when controlling for hypertension and body mass index, Ruminococcus bromii, Blautia obeum, Roseburia, and HT002 were associated with three subscales of the MFI-20. Discussion Black women with PCOS experience mild to moderate fatigue. Clinicians should be cognizant of this population’s increased risk for fatigue to adequately address their healthcare needs. We also found that gut microbial composition was associated with fatigue in Black women with PCOS. Specifically, a higher relative abundance of certain gut bacteria involved in short-chain fatty acid production and anti-inflammatory pathways was correlated with lower fatigue levels. Future studies should further investigate the link between the gut microbiome and fatigue to determine whether this relationship is causal as better insight could inform tailored diet and exercise interventions to alter the gut microbiome and reduce fatigue.

Longitudinal Fatigue Symptoms and Inflammatory Markers in African American Adults With Hypertension and Obstructive Sleep Apnea

imageBackground There is a dearth of research inclusive of African American adults living with obstructive sleep apnea (OSA) despite differences in symptom presentations compared to non-Hispanic White patient populations. Less is known regarding the potential effect of comorbidities, including hypertension, on commonly reported symptoms, such as fatigue, and their association with inflammatory biomarkers. Objective This longitudinal pilot study aimed to characterize fatigue symptom presentations among African American adults newly diagnosed with OSA and discern peripheral blood analytes linked to symptoms while accounting for co-occurring hypertension. Methods African American adults newly diagnosed with OSA with and without co-occurring hypertension were approached by study staff and recruited following their diagnostic visit with sleep medicine clinicians at two health systems and followed over 6 months after commencing continuous positive airway pressure treatment. Patient-Reported Outcomes Measurement Information System Fatigue surveys and plasma were collected every 3 months from 29 participants. Mixed-effects models examined changes in fatigue symptom presentations over time while accounting for plasma-based analytes and hypertension status. Results Despite higher fatigue symptom severity upon diagnosis, participants with co-occurring hypertension reported greater improvements in fatigue scores after commencing continuous positive airway pressure treatment for up to 6 months than those without hypertension. Inverse correlations were observed between fatigue scores, C-reactive protein, matrix metalloproteinase-8, and osteoprotegerin analyte levels among participants with/without hypertension. Across all participants, changes in interleukin-6 were associated with changes in fatigue scores in the first 3 months after diagnosis. Discussion Findings indicate that hypertension is linked to increased fatigue upon diagnosis of OSA in this sample of African American adults. Fatigue in persons with hypertension improved after treatment in this sample. These hypothesis-generating findings can inform future interventional studies aimed at improving fatigue among persons with OSA while leveraging markers linked to fatigue symptom severity as potential objective markers of improvements. Further research on the role of inflammatory markers, such as IL-6, on fatigue symptom presentations is warranted in persons with OSA.
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