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Barriers to patient participation in a self-management and education website Renal PatientView: A questionnaire-based study of inactive users.

OBJECTIVES: The Renal PatientView (RPV) website is an information and education tool aimed at increasing patient involvement in their care. We have conducted this study to elucidate why some users remain inactive on RPV despite initially signing up for the service. METHODS: Patients at a teaching hospital in United Kingdom, who originally signed up for RPV but are no longer active (no logins during previous 6 months), were sent paper questionnaires. Responses were collected for up to 6 months. RESULTS: Of the 190 questionnaires, 69 (39%) were returned partially or fully completed. Majority o

Patient values in patient-provider communication about participation in early phase clinical cancer trials: a qualitative analysis before and after implementation of an online value clarification tool intervention.

BACKGROUND: Patients with advanced cancer who no longer have standard treatment options available may decide to participate in early phase clinical trials (i.e. experimental treatments with uncertain outcomes). Shared decision-making (SDM) models help to understand considerations that influence patients' decision. Discussion of patient values is essential to SDM, but such communication is often limited in this context and may require new interventions. The OnVaCT intervention, consisting of a preparatory online value clarification tool (OnVaCT) for patients and communication training for oncol

Feasibility, acceptability, and usability of a patient decision aid for participation in the DAHANCA 35 proton radiotherapy trial: A qualitative study.

BACKGROUND: Clinical trial participation in oncology remains low, despite its importance for advancing treatment. Patients are often asked to consider trial participation in emotionally and cognitively demanding situations, which may limit their ability to engage with complex information and relate decisions to their values and life context. Patient decision aids (PtDAs) may support informed, value-based decision-making, but their feasibility in clinical trial settings warrants further exploration. OBJECTIVE: To qualitatively assess the feasibility of integrating a clinical trial PtDA into ro

Patterns of Cohort Participation Among People with Systemic Sclerosis in an Open Cohort: a Scleroderma Patient-centered Intervention Network Cohort Study.

Participants who continue across the full duration of longitudinal studies often differ from those lost to attrition, defined as discontinuing participation for any reason, and some participants may sporadically miss assessments. Complex participation patterns, such as in multicenter chronic disease cohorts, have not been studied. We aimed to implement an approach to identify participation subgroups and factors associated with theses. We applied our approach in the SPIN Cohort, a multicenter, longitudinal systemic sclerosis (SSc) cohort, because it is an example of an open-ended cohort with no

Application of deep learning on mammographies to discriminate between low and high-risk DCIS for patient participation in active surveillance trials.

BACKGROUND: Ductal Carcinoma In Situ (DCIS) can progress to invasive breast cancer, but most DCIS lesions never will. Therefore, four clinical trials (COMET, LORIS, LORETTA, AND LORD) test whether active surveillance for women with low-risk Ductal carcinoma In Situ is safe (E. S. Hwang et al., BMJ Open, 9: e026797, 2019, A. Francis et al., Eur J Cancer. 51: 2296-2303, 2015, Chizuko Kanbayashi et al. The international collaboration of active surveillance trials for low-risk DCIS (LORIS, LORD, COMET, LORETTA),  L. E. Elshof et al., Eur J Cancer, 51, 1497-510, 2015). Low-risk is defined as grade

A qualitative exploration of patient safety in a hospital setting in Spain: Policy and practice recommendations on patients' and companions' participation.

IntroductionPatients' and companions' participation in healthcare could help prevent adverse events, which are a significant cause of disease and disability. Before designing interventions to increase participation, it is first necessary to identify attitudes to patient safety. This study aimed to explore patients' and companions' perceptions, attitudes and experiences of patient safety, taking into account contextual factors, such as cultural background, which are not usually captured in the literature.MethodsWe conducted a qualitative study with a theoretical sampling of 13 inpatients and 3

Machine Learning Based Linking of Patient Reported Outcome Measures to WHO International Classification of Functioning, Disability, and Health Activity/Participation Categories.

BACKGROUND: In the primary and secondary medical health sector, patient reported outcome measures (PROMs) are widely used to assess a patient's disease-related functional health state. However, the World Health Organization (WHO), in its recently adopted resolution on "strengthening rehabilitation in all health systems", encourages that all health sectors, not only the rehabilitation sector, classify a patient's functioning and health state according to the International Classification of Functioning, Disability and Health (ICF). AIM: This research sought to optimize machine learning (ML) met

Patient experiences of participation in a radical thoracic surgical trial: findings from the Mesothelioma and Radical Surgery Trial 2 (MARS 2).

BACKGROUND: The Mesothelioma and Radical Surgery Trial (MARS 2) aims to evaluate a surgical procedure by comparing chemotherapy and surgery against chemotherapy alone. The pilot study for MARS 2 evaluated the viability of recruitment. Challenges have been reported in conducting clinical research into thoracic surgical treatments and evidence is required to improve our understanding of patient experiences of trial procedures, trial treatments and the factors that influence participation. METHODS: This longitudinal qualitative study was nested within the MARS 2 pilot. Semi-structured telephone

Patient-reported Symptom Experiences in Patients With Carcinoid Syndrome After Participation in a Study of Telotristat Etiprate: A Qualitative Interview Approach.

PURPOSE: Telotristat etiprate, a tryptophan hydroxylase inhibitor, was previously evaluated in a Phase II randomized, placebo-controlled clinical trial in patients with carcinoid syndrome (CS) and diarrhea not adequately controlled by octreotide. The objective of the current study was to characterize the symptom experiences of patients participating in that trial. METHODS: Consenting patients participated in one-on-one, qualitative interviews focused on eliciting symptoms they had experienced in association with their CS diagnosis and recollection of symptom changes they experienced while par

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.

PurposeThe 'Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship' (PROFILES) registry collects patient-reported outcomes (PROs) from short- and long-term cancer survivors in the Netherlands, in a population-based setting. The aim of this analysis is to assess the generalizability of observational PRO research among cancer survivors by comparing socio-demographic and clinical characteristics, and survival of participants and non-participants in cancer survivors invited for questionnaire research through the PROFILES registry.MethodsBetween 2008 and 2015

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… Relying on individual patient participation, PROs are subject to bias, of which non-response bias has raised high concerns [ 2 ]. …

Trial participation as a determinant of clinical outcome: differences between trial-participants and Every Day Clinical Care patients in the field of interventional cardiology.

BACKGROUND: This study examines differences in clinical outcome between trial-participants and non-participants after percutaneous coronary intervention (PCI). METHODS AND RESULTS: This study compromised of 11,931 consecutive patients who underwent PCI in a high volume center, during the period 2000 - 2009. Of these patients, 1787 (15%) participated in an interventional clinical trial with a follow-up period of at least six months. The maximum follow-up duration was 11.8 years, with a median of 3.8 years (IQR: 2.6 - 6.5). Baseline and procedural characteristics differed between trial-particip

Work participation in inborn errors of immunity: The dual burden on patients and caregivers.

Despite improved survival, occupational challenges in with inborn errors of immunity (IEI) patients and their families remain unmeasured. We conducted a nationwide cross-sectional survey promoted by AIP and ImmunITA, including 420 IEI adults and 110 caregivers, integrating occupational data with patient-reported outcome measures. Multivariable models assessed employment and productivity determinants. Overall, 67% of patients were employed, yet half reported reduced capacity, unsafe environments, limited career progression, and stigma. Unemployment was associated with female sex, disability, an

Patients With Bw4 and Bw6 Antibodies can Participate in Clinical Xenotransplantation Trials.

BACKGROUND: With clinical xenotransplantation now underway, optimal patient selection is critical for achieving successful outcomes. Candidates with antibodies targeting Bw4 and Bw6 epitopes on HLA molecules often experience prolonged wait times for allotransplantation because of high calculated panel reactive antibody levels. We investigated whether these antibodies cross-react with class I swine leukocyte antigen (SLA) molecules and could therefore pose a barrier to xenotransplantation. METHODS: We performed sequence alignment and structural modeling to assess the presence of Bw4 and Bw6 ep

Sporotrichosis in patients with diabetes mellitus: A systematic review of individual participant data.

Sporotrichosis is a globally distributed subcutaneous mycosis caused by fungi of the Sporothrix complex, and is associated with worse outcomes in immunocompromised individuals, including those with diabetes mellitus. The impact of diabetes mellitus on the clinical presentation and outcomes of sporotrichosis remains poorly characterized. We conducted a systematic review of individual participant data to assess this association. Eight databases (Cochrane Library, Embase, LILACS, MEDLINE/PubMed, Scopus, Global Index Medicus/WHO, SciELO, and Web of Science) were searched without restrictions on pu

Barriers to Cardiac Rehabilitation Participation Faced by Patients of Lower Socioeconomic Status.

PURPOSE: Individuals with lower socioeconomic status (SES) are less likely to engage in cardiac rehabilitation (CR) following a major cardiac event. Identifying barriers to attending CR is crucial for facilitating recovery for this vulnerable population. METHODS: Data are from a randomized controlled trial on improving CR attendance for individuals with lower SES (N = 192; 35% female). Of these, 103 (40% female) were randomly assigned to a case management arm and included in the present analysis. Participants were recruited at or shortly after hospitalization for a CR-qualifying cardiac event

AZD0449, an inhaled JAK1 inhibitor, in healthy participants and patients with mild asthma.

AIMS: Inhaled corticosteroids (ICS) plus bronchodilator are recommended for the treatment of asthma. Targeting the JAK1-dependent pathway may be an alternative for asthma management in patients with incomplete response to ICS. The aim of this study was to investigate the safety, tolerability, pharmacokinetics (PK) and pharmacodynamics (PD) of AZD0449, a novel JAK1 selective inhibitor, following inhaled (dry powder, nebulized) and intravenous administration to healthy participants and patients with mild asthma. METHODS: This was a randomized, single-blind, placebo-controlled Phase 1 study (NCT

Evaluation of Resident Participation on Specimen Margin Status in Patients Undergoing Lumpectomy.

In the practice of breast surgery, positive margins are a troublesome pathologic finding associated with an increased risk of local recurrence and the recommendation of re-excision. For this reason, there is an emphasis placed on negative margins for breast surgeries. In this study, we analyze surgical resident involvement in breast cancer operations and associations with margin status.MethodsA retrospective study was completed of adult female patients who underwent a lumpectomy by a single surgeon. The surgeries were categorized by resident involvement in the surgical procedure. Other variabl

Home Based Cardiac Rehabilitation Participation Among Patients With Heart Failure.

INTRODUCTION: Patients with Heart Failure (HF) have significant morbidity and mortality. Home Based Cardiac Rehabilitation (HBCR) is a form of Cardiac Rehabilitation (CR) which has been proven beneficial for the patients with cardiovascular disease; However, cardiovascular outcomes in patients with HF who was referred to HBCR is not known. METHODS: A retrospective study of 188 patients with HF (HFrEF or heart failure with reduced ejection fraction and HFpEF or heart failure with preserved ejection fraction) referred to HBCR at Veterans Affairs Medical Center (VAMC) from November 2017 to March

Exploring patient experiences of participating in digital cardiac rehabilitation: A qualitative study.

OBJECTIVE: Digital cardiac rehabilitation (CR) has emerged as a promising alternative to in-person CR. Understanding patients' experiences and perceptions can provide valuable insights into what makes these programmes successful and identify opportunities for improvement. This study aimed to explore patients' experiences of digital CR and to understand the factors that make these programmes successful. DESIGN: A qualitative approach was taken. METHODS: From March to August 2022, we conducted semi-structured interviews with patients who were referred to one of two digital CR programmes offere

An Exploration of Online Support Community Participation Among Patients With Vestibular Disorders.

OBJECTIVES/HYPOTHESIS: To formally document online support community (OSC) use among patients with vestibular symptoms and gain an appreciation for the perceived influence of participation on psychosocial outcomes and the impact on medical decision-making. STUDY DESIGN: Self reported internet-based questionnaire. METHODS: The Facebook search function was paired with a comprehensive list of vestibular diagnoses to systematically collect publicly available information on vestibular OSCs. Next, a survey was designed to gather clinicodemographic information, OSC characteristics, participation me