Conectar
Despite international efforts, the number of individuals struggling with obesity is still increasing. An important aspect of obesity prevention relates to identifying individuals at risk at early stage, allowing for timely risk stratification and initiation of countermeasures. However, obesity is complex and multifactorial by nature, and one isolated (bio)marker is unlikely to enable an optimal risk stratification and prognosis for the individual; rather, a combined set is required. Such a multicomponent interpretation would integrate biomarkers from various domains, such as classical markers (eg, anthropometrics, blood lipids), multiomics (eg, genetics, proteomics, metabolomics), lifestyle and behavioural attributes (eg, diet, physical activity, sleep patterns), psychological traits (mental health status such as depression) and additional host factors (eg, gut microbiota diversity), also by means of advanced interpretation tools such as machine learning. In this paper, we will present a protocol that will be employed for a scoping review that attempts to summarise and map the state-of-the-art in the area of multicomponent (bio)markers related to obesity, focusing on the usability and effectiveness of such biomarkers.
PubMed, Scopus, CINAHL and Embase databases will be searched using predefined key terms to identify peer-reviewed articles published in English until January 2024. Once downloaded into EndNote for deduplication, CADIMA will be employed to review and select abstracts and full-text articles in a two-step procedure, by two independent reviewers. Data extraction will then be carried out by several independent reviewers. Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews and Peer Review of Electronic Search Strategies guidelines will be followed. Combinations employing at least two biomarkers from different domains will be mapped and discussed.
Ethical approval is not required; data will rely on published articles. Findings will be published open access in an international peer-reviewed journal. This review will allow guiding future directions for research and public health strategies on obesity prevention, paving the way towards multicomponent interventions.
Japanese encephalitis virus (JEV) is a mosquito-borne flavivirus that causes encephalitis and other morbidity in Southeast Asia. Since February 2022, geographically dispersed JEV human, animal and vector detections occurred on the Australian mainland for the first time. This study will determine the prevalence of JEV-specific antibodies in human blood with a focus on populations at high risk of JEV exposure and determine risk factors associated with JEV seropositivity by location, age, occupation and other factors.
Samples are collected using two approaches: from routine blood donors (4153 samples), and active collections targeting high-risk populations (convenience sampling). Consent-based sampling for the latter includes a participant questionnaire on demographic, vaccination and exposure data. Samples are tested for JEV-specific total antibody using a defined epitope-blocking ELISA, and total antibody to Australian endemic flaviviruses Murray Valley encephalitis and Kunjin viruses.
Two analytic approaches will occur: descriptive estimates of seroprevalence and multivariable logistic regression using Bayesian hierarchical models. Descriptive analyses will include unadjusted analysis of raw data with exclusions for JEV-endemic country of birth, travel to JEV-endemic countries, prior JEV-vaccination, and sex-standardised and age-standardised analyses. Multivariable logistic regression will determine which risk factors are associated with JEV seropositivity likely due to recent transmission within Australia and the relative contribution of each factor when accounting for effects within the model.
National Mutual Acceptance ethical approval was obtained from the Sydney Children’s Hospitals Network Human Research Ethics Committee (HREC). Local approvals were sought in each jurisdiction. Ethical approval was also obtained from the Australian Red Cross Lifeblood HREC.
Findings will be communicated to participants and their communities, and human and animal health stakeholders and policy-makers iteratively and after final analyses. Understanding human infection rates will inform procurement and targeted allocation of limited JEV vaccine, and public health strategies and communication campaigns, to at-risk populations.
Patients' death or adverse events appear to be associated with poor healthcare decision-making. This might be due to an inability to have an adequate representation of the problem or of the connections among problem-related elements. Changing how a problem is formulated can reduce biases in clinical reasoning. The purpose of this article is to explore the possible contributions of psychoneuroendocrinoimmunology (PNEI) and psychology of reasoning and decision-making (PRDM) to support a new nursing theoretical frame.
Discursive paper.
This article discusses the main assumptions about nursing and nurses' ability to face patient's problems, suggesting a new approach that integrates knowledge from PNEI and PRDM. While PNEI explains the complexity of systems, highlighting the importance of systems connections in affecting health, PRDM underlines the importance of the informative context in creating a mental representation of the problem. Furthermore, PRDM suggests the need to pay attention to information that is not immediately explicit and its connections.
Nursing recognizes the patient–nurse relationship as the axiom that governs care. The integration of PNEI and PRDM in nursing theoretics allows the expansion of the axiom by providing essential elements to read a new type of relationship: the relationship among information. PNEI explains the relationships between biological systems and the psyche and between the whole individual and the environment; PRDM provides tools for the nurse's analytical thinking system to correctly process information and its connections.
A theoretical renewal is mandatory to improve nursing reasoning and nursing priority identification. Integrating PNEI and PRDM into nursing theoretics will modify the way professionals approach patients, reducing cognitive biases and medical errors.
There was no patient or public involvement in the design or writing of this discursive article.
The increased global burden of non-communicable diseases and mental disorders is an urgent health challenge for countries around the entire world, especially those experiencing super-ageing societies, where over 21% of the population is age 65 years or older. Japan is the world’s most rapidly ageing society, and as a result, medical costs are also rising dramatically. With the aims of establishing a foundational framework for future research efforts, primarily focusing on the development of a personal health record (PHR) system, and creating a long-term repository for bioresources integrated with PHRs, this study investigated potential health risks and future healthcare burdens based on a longitudinal analysis of health records.
The Resource Center for Health Science (RECHS) project is a long-term, prospective biobank project, population and health check-up-based cohort that primarily investigates the associations between lifestyle and environmental factors and some surrogate markers of non-communicable diseases, such as diabetes, hypertension, cardiovascular disease and cancer. Starting in 2010, we initiated an annual cohort study among voluntary participants recruited from health check-up programmes and collected data from the following sources: a self-administered baseline questionnaire that included items on dietary habits and stress, a Brief Self-Administered Diet History Questionnaire, the Centre for Epidemiologic Studies Depression Scale and the General Health Questionnaire-28.
For this prospective cohort study, we planned to enrol approximately 10 000 participants. We collected and stored serum samples from all participants for future analyses. The study participants who still were able to participate in these health check-ups and their outcomes were then obtained from the measurements and questionnaire responses.
Insights emerging from the RECHS study can provide researchers and public health policy administrators with evidence to aid in the prevention of non-communicable diseases and clarify the most malleable status to implement preventive measures.
This study aims to (1) introduce the emergent concept of the retrograde plunge experienced by people living with Alzheimer's disease and (2) illustrate how nurses can accompany those experiencing this phenomenon, as well as their family and formal carers, using the seven-phase inquiry process proposed by Smith and Liehr.
Discursive paper.
After describing the phenomenon and the Story Theory, the 7-phase Inquiry Process presents the fictional story of Mrs. Lurie, a nursing home resident.
Story theory allows nurses to accompany Mrs. Lurie. The emergent concept of retrograde plunge is explained. Different tools such as genograms, story paths and eco-maps are presented. This discussion demonstrates how some perspectives can contribute to a better description of the retrograde plunge phenomenon. The narrative care approach can help give voices to people experiencing retrograde phenomena. The adoption of a perspective that considers embodied language could help to better understand the needs of a person.
There is a lack of consistency and uniformity regarding the understanding of the retrograde phenomenon. This impacts the quality of care for people and the scientific knowledge, research and education of healthcare professionals. This issue should be addressed in future studies.
This article shows how story theory helps nurses accompany those facing a retrograde plunge phenomenon, helps them tell their own stories and finds a way to resolve the situation.
This article paves the way for further developments that must now be realized by the international community of experts involved in the care of people with Alzheimer's disease, from practical, academic and research perspectives.
No patient or public was involved in the design or drafting of the discursive paper.
The retrograde plunge is a phenomenon in which people living with Alzheimer's disease return to their past lives and re-experience with certain events. The retrograde plunge is a well-known concept that is poorly described in scientific literature and is sometimes misunderstood by families and professional caregivers. This discursive article explains the retrograde plunge phenomenon experienced by people living with Alzheimer's disease.
This article demonstrates how story theory helps nurses and families support people with retrograde plunges. This highlights the lack of consistency and uniformity in this phenomenon, which has implications for the quality of care, education and research. Story theory and the seven-phase inquiry process proposed by Smith and Liehr (in Middle-range theory for nursing, Springer Publishing Company, 2023) help to better understand and explain the retrograde plunge phenomenon.
This article advances nurses' knowledge in the different fields of practice, teaching and research. This article proposes links among the retrograde plunge phenomenon, embodied language and narrative care approach; this could offer further ways to develop nursing knowledge. This study has the potential to advance the knowledge of practice and education and offers new opportunities for research.
There was no trial or protocol registration as this article is a discussion.
by Sabina Marasini, Sudim Sharma, Anjali Joshi, Surakshya Kunwar, Roshan Kumar Mahato, Archana Shrestha, Biraj Karmacharya
BackgroundInappropriate use of antimicrobials is a global public health issue, particularly in developing countries, including Nepal, where over-the-counter sales and self-medication of antimicrobials are common.
ObjectivesTo explore knowledge, perceptions, and practices of antimicrobials and their resistance among medicine dispensers and community members in Nepal.
MethodsThe study was conducted in three rural and five urban municipalities of the Kavrepalanchok district from May 2021 to August 2021. Data were collected using two qualitative approaches: In-Depth Interviews (IDIs) and Focus Group Discussions (FGDs). Data were analyzed using thematic analysis that combined deductive and inductive approaches to identify codes under pre-specified themes.
ResultsA total of 16 In-depth interviews with medicine dispensers and 3 focus group discussions with community members were conducted. Knowledge regarding antimicrobial resistance varied among dispensers. Those with a prior educational background in pharmacy often had good knowledge about the causes and consequences of antimicrobial resistance. Meanwhile, consumers were less aware of antimicrobial resistance. Community members perceived antimicrobials as effective medicines but not long-term solution for treating diseases. They reported that dispensing without a prescription was common and that both consumers and dispensers were responsible for the inappropriate use of antimicrobials. On the contrary, several dispensers said that self-medication was common among the consumers, especially among more educated groups. The medicine dispensers and consumers expressed concerns about the weak enforcement of policies regarding pharmacy drug use and dispensing practices.
ConclusionPromoting and strengthening the appropriate use of antimicrobials among medicine dispensers and community members is crucial. Bold policies and collective implementation of regulations could help combat antimicrobial resistance.
by Heba Shahaed, Sai Surabi Thirugnanasampanthar, Dale Guenter
Several factors impact successful reintegration after incarceration. We sought to better understand these factors such as pre-release preparedness or access to financial resources in provincial correctional facilities in Ontario, Canada with an underlying focus on the role of personal identification (PID) among people at risk of homelessness. We conducted a qualitative study with one-on-one telephone interviews. Eligibility criteria included having been released from a provincial correctional facility in the preceding 2 years, being over the age of 18, speaking English and having telephone access. Participants were recruited between February 2021 and July 2021. All interviews were audio recorded and transcribed. Data was analyzed using a thematic analysis framework along with strategies from grounded theory research. We interviewed 12 individuals and identified six key themes including 1) Degree of Preparedness Pre-Release 2) Managing Priorities Post-Release 3) Impact of Support Post-Release 4) Obstacles with Accessing Services 5) Influence of Personal Identification 6) Emotions and Uncertainty. We found that people with mental health and addiction challenges are uniquely at risk post-release. Solutions must include comprehensive and proactive case management that bridges the pre-release and post-release periods, simplified processes for obtaining PID, better connections to health and social services, and improved pre-release planning for community support.by Jaecy K. Banther-McConnell, Thanchira Suriyamongkol, Samuel M. Goodfellow, Robert A. Nofchissey, Steven B. Bradfute, Ivana Mali
Orthohantaviruses are diverse zoonotic RNA viruses. Small mammals, such as mice and rats are common chronic, asymptomatic hosts that transmit the virus through their feces and urine. In North America, hantavirus infection primarily causes hantavirus cardiopulmonary syndrome (HCPS), which has a mortality rate of nearly 36%. In the United States of America, New Mexico (NM) is leading the nation in the number of HCPS-reported cases (N = 129). However, no reported cases of HCPS have occurred within eastern NM. In this study, we assessed the prevalence of Sin Nombre virus (SNV) in rodent assemblages across eastern NM, using RT-qPCR. We screened for potential rodent hosts in the region, as well as identified areas that may pose significant infection risk to humans. We captured and collected blood and lung tissues from 738 rodents belonging to 23 species. 167 individuals from 16 different species were positive for SNV RNA by RT-qPCR, including 6 species unreported in the literature: Onychomys leucogaster (Northern grasshopper mouse), Dipodomys merriami (Merriam’s kangaroo rat), Dipodomys ordii (Ord’s kangaroo rat), Dipodomys spectabilis (Banner-tailed kangaroo rat), Perognathus flavus (Silky pocket mouse), and Chaetodipus hispidus (Hispid pocket mouse). The infection rates did not differ between sexes or rodent families (i.e., Cricetidae vs. Heteromyidae). Generalized linear model showed that disturbed habitat types positively influenced the prevalence of SNV at sites of survey. Overall, the results of this study indicate that many rodent species in east New Mexico have the potential to maintain SNV in the environment, but further research is needed to assess species specific infectivity mechanisms and potential risk to humans.by Suratsawadee Wangnamthip, Nantthasorn Zinboonyahgoon, Pranee Rushatamukayanunt, Patcha Papaisarn, Burapa Pajina, Thanawut Jitsinthunun, Panuwat Promsin, Rujipas Sirijatuphat, César Fernández-de-las-Peñas, Lars Arendt-Nielsen, Daniel Ciampi de Andrade
The COVID-19 pandemic has affected millions of individuals worldwide. Pain has emerged as a significant post-COVID-19 symptom. This study investigated the incidence, characteristics, and risk factors of post-COVID chronic pain (PCCP) in Thailand. A cross-sectional study was conducted in participants who had been infected, including those hospitalized and monitored at home by SARS-CoV-2 from August to September 2021. Data were collected for screening from medical records, and phone interviews were done between 3 to 6 months post-infection. Participants were classified into 1) no-pain, 2) PCCP, 3) chronic pain that has been aggravated by COVID-19, or 4) chronic pain that has not been aggravated by COVID-19. Pain interference and quality of life were evaluated with the Brief Pain Inventory and EuroQol Five Dimensions Five Levels Questionnaire. From 1,019 participants, 90% of the participants had mild infection, assessed by WHO progression scale. The overall incidence of PCCP was 3.2% (95% CI 2.3–4.5), with 2.8% (95% CI 2.0–4.1) in mild infection, 5.2% (95% CI 1.2–14.1) in moderate infection and 8.5% (95% CI 3.4–19.9) in severe infection. Most participants (83.3%) reported pain in the back and lower extremities and were classified as musculoskeletal pain and headache (8.3%). Risk factors associated with PCCP, included female sex (relative risk [RR] 2.2, 95% CI 1.0–4.9) and greater COVID-19 severity (RR 3.5, 95% CI 1.1–11.7). Participants with COVID-19-related exacerbated chronic pain displayed higher pain interferences and lower utility scores than other groups. In conclusion, this study highlights the incidence, features, and risk factors of post-COVID chronic pain (PCCP) in Thailand. It emphasizes the need to monitor and address PCCP, especially in severe cases, among females, and individuals with a history of chronic pain to improve their quality of life in the context of the ongoing COVID-19 pandemic.by Satomi Mezuki, Ryu Matsuo, Fumi Irie, Yuji Shono, Takahiro Kuwashiro, Hiroshi Sugimori, Yoshinobu Wakisaka, Tetsuro Ago, Masahiro Kamouchi, Takanari Kitazono, on behalf of the Fukuoka Stroke Registry Investigators
BackgroundThis study aimed to examine whether post-stroke early body temperature is associated with neurological damage in the acute phase and functional outcomes at three months.
MethodsWe included 7,177 patients with acute ischemic stroke within 24 h of onset. Axillary temperature was measured daily in the morning for seven days. Mean body temperature was grouped into five quintiles (Q1: 35.1‒36.5°C, Q2: 36.5‒36.7°C, Q3: 36.7‒36.8°C, Q4: 36.8‒37.1°C, and Q5: 37.1‒39.1°C). Clinical outcomes included neurological improvement during hospitalization and poor functional outcome (modified Rankin scale score, 3–6) at three months. A logistic regression analysis was performed to evaluate the association between body temperature and clinical outcomes.
ResultsThe patient’s mean (SD) age was 70.6 (12.3) years, and 35.7% of patients were women. Mean body temperature was significantly associated with less neurological improvement from Q2 (odds ratios [95% confidence interval], 0.77 [0.65–0.99] vs. Q1) to Q5 (0.33 [0.28–0.40], P for trend 37.0°C.
ConclusionsPost-stroke early high body temperature is independently associated with unfavorable outcomes following acute ischemic stroke.
by Kayo Wakisaka, Ryu Matsuo, Fumi Irie, Yoshinobu Wakisaka, Tetsuro Ago, Masahiro Kamouchi, Takanari Kitazono, on behalf of the Fukuoka Stroke Registry Investigators
BackgroundIt is unclear whether abdominal adiposity has an additional effect on post-stroke outcomes. This study aimed to determine whether waist circumference (WC) is independently associated with clinical outcomes after acute ischemic stroke.
MethodsWe enrolled patients with acute ischemic stroke from a multicenter hospital-based stroke registry in Fukuoka, Japan. We measured WC on admission and categorized patients into four groups (Q1–Q4) according to the quartiles in females and males. The clinical outcomes were poor functional outcome (modified Rankin scale score 2–6) and death from any cause. Logistic regression analysis was performed to estimate the odds ratio and 95% confidence interval of the outcomes of interest after adjusting for potential confounding factors, including body mass index (BMI).
ResultsA total of 11,989 patients (70.3±12.2 years, females: 36.1%) were included in the analysis. The risk of poor functional outcome significantly decreased for Q2–Q4 (vs. Q1) at discharge and Q2–Q3 (vs. Q1) at 3 months, even after adjusting for potential confounders, including BMI. In contrast, adjustment of BMI eliminated the significant association between WC and all-cause death at discharge and 3 months. The association between high WC and favorable functional outcome was not affected by fasting insulin levels or homeostatic model assessment for insulin resistance and was only found in patients without diabetes (P = 0.02 for heterogeneity).
ConclusionsThese findings suggest that abdominal adiposity has an additional impact on post-stroke functional outcome, independent of body weight and insulin action.
To determine the frequency, timing, and duration of post-acute sequelae of SARS-CoV-2 infection (PASC) and their impact on health and function.
Post-acute sequelae of SARS-CoV-2 infection is an emerging major public health problem that is poorly understood and has no current treatment or cure. PASC is a new syndrome that has yet to be fully clinically characterised.
Descriptive cross-sectional survey (n = 5163) was conducted from online COVID-19 survivor support groups who reported symptoms for more than 21 days following SARS-CoV-2 infection.
Participants reported background demographics and the date and method of their covid diagnosis, as well as all symptoms experienced since onset of covid in terms of the symptom start date, duration, and Likert scales measuring three symptom-specific health impacts: pain and discomfort, work impairment, and social impairment. Descriptive statistics and measures of central tendencies were computed for participant demographics and symptom data.
Participants reported experiencing a mean of 21 symptoms (range 1–93); fatigue (79.0%), headache (55.3%), shortness of breath (55.3%) and difficulty concentrating (53.6%) were the most common. Symptoms often remitted and relapsed for extended periods of time (duration M = 112 days), longest lasting symptoms included the inability to exercise (M = 106.5 days), fatigue (M = 101.7 days) and difficulty concentrating, associated with memory impairment (M = 101.1 days). Participants reported extreme pressure at the base of the head, syncope, sharp or sudden chest pain, and “brain pressure” among the most distressing and impacting daily life.
Post-acute sequelae of SARS-CoV-2 infection can be characterised by a wide range of symptoms, many of which cause moderate-to-severe distress and can hinder survivors' overall well-being.
This study advances our understanding of the symptoms of PASC and their health impacts.
by Woro Estiningtyas, Elza Surmaini, Suciantini, Erni Susanti, Anny Mulyani, Budi Kartiwa, Sumaryanto, Perdinan, Yayan Apriyana, Annisa Dhienar Alifia
As a result of plans to relocate the Indonesian capital city to East Kalimantan province, Kalimantan is expected to develop rapidly and the surrounding regencies and provinces will become food support areas for the new capital. However, the vulnerability of food farming in Kalimantan is a concern that must be addressed to ensure food security. This study aims to assess the vulnerability of food farming at the regency level of the island of Kalimantan, to assess the determinant factors of the food farming vulnerability and to compose adaptation measures that can reduce vulnerability. Socio economic, climate, water and land data are sorted and analyzed to represent the level of sensitivity and exposure index (SEI) and adaptive capacity index (ACI). Locations with ‘High’ and ‘Very High’ levels of farming vulnerability become interview sites with a total of 150 respondents. The results of the interviews strengthen the results of the vulnerability analysis which helps to determine the condition of farmers and food farming in vulnerable locations. The results indicated ‘Very High’ and ‘High’ level of vulnerability in 14 regencies/cities. Floods are climate-related disasters that most often affect farmers surveyed (46%), followed by droughts (30%) and pest attacks (24%) with significant impacts (49%). The identification of the determinant factors becomes the basis for adaptive measures to support decision-makers, local practitioners, and farmers by highlighting local challenges and proposing local-specific adaptation strategies.Photobiomodulation (PBM) using low-level laser can affect tissue repair mechanisms and seems promising in reducing pain intensity. However, few studies support the effectiveness of PBM on postpartum period complications, such as nipple and/or perineal trauma and pain, probably due to the low doses used. The primary objective of this study is to analyse the effectiveness of PBM on pain intensity in the nipple and perineal trauma in women in the immediate postpartum period. Secondary objectives are to evaluate the effect on tissue healing and the women’s satisfaction.
A double-blind, multicentre, parallel-group, randomised controlled trial will be performed in two public referral maternity hospitals in Brazil with 120 participants, divided into two arms: 60 participants in the nipple trauma arm and 60 participants in the perineal trauma arm. Participants will be women in the immediate postpartum period, who present with nipple trauma or perineal trauma and report pain intensity greater than or equal to 4 points on the Numerical Rating Scale for Pain. Block randomisation will be performed, followed by blinding allocation. In the experimental group, one application of PBM will be performed between 6 hours and 36 hours after birth. For the sham group, the simulation will be carried out without triggering energy. Both participants and the research evaluator will be blinded to the allocation group. Intention-to-treat method and the between-group and within-group outcome measures analysis will be performed.
This research protocol was approved by the Research Ethics Committees of the University of Campinas, Brazil, and of the School Maternity Assis Chateaubriand, Brazil (numbers CAAE: 59400922.1.1001.5404; 59400922.1.3001.5050). Participants will be required to sign the informed consent form to participate. Results will be disseminated to the health science community.
Brazilian Registry of Clinical Trials (RBR-2qm8jrp).
The Improving the Wellbeing of people with Opioid Treated CHronic pain (I-WOTCH) randomised controlled trial found that a group-based educational intervention to support people using strong opioids for chronic non-malignant pain helped a significant proportion of people to stop or decrease opioid use with no increase in pain-related disability. We report a linked process evaluation of the group-based intervention evaluated in comparison to a usual-care control group that received a self-help booklet and relaxation CD.
We interviewed 18 intervention facilitators, and 20 intervention and 20 control participants who had chronic non-malignant pain and were recruited from general (family) practices in the UK. Quantitative data included change mechanism questions on the trial questionnaires which explored motivation, expectations and self-efficacy. Fidelity was assessed by listening to a sample of audio-recorded group sessions and nurse consultations. Quantitative and qualitative data were integrated using ‘follow a thread’ and a mixed-methods matrix.
Four overarching themes emerged: (1) the right time to taper, (2) the backdrop of a life with chronic pain, (3) needing support and (4) the benefits of being in a group. Delivery fidelity was good, adherence (83%) and competence (79%) across a range of intervention groups. Staff delivering the intervention found three typical responses to the intervention: resistance, open to trying and feeling it was not the right time. The group experience was important to those in the intervention arm. It provided people with a forum in which to learn about the current thinking about opioid usage and its effects. It also gave them examples of how feasible or personally relevant coming off opioids might be.
The process evaluation data showed that the I-WOTCH intervention was well delivered, well received and useful for most interviewees. Being ‘the right time’ to taper and having support throughout tapering, emerged as important factors within the context of living with chronic pain.
The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research.
We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis.
The study was conducted online.
Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study.
Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE.
Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups.
Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.
FreshRSS 