Patient Participation Research Articles

Missed Opportunities for Human-Centered AI Research: Understanding Stakeholder Collaboration in Mental Health AI Research

In the mental health domain, patient engagement is key to designing human-centered technologies. CSCW and HCI researchers have delved into various facets of collaboration in AI research; however, previous research neglects the individuals who both produce the data and will be most impacted by the resulting technologies, such as patients. This study examines how interdisciplinary researchers and mental health patients who donate their data for AI research collaborate and how we can improve human-centeredness in mental health AI research. We interviewed patient participants, AI researchers, and clinical researchers in a federally funded mental health AI research project. We used the concept of boundary objects to understand stakeholder collaboration. Our findings reveal that the social media data provided by patient participants functioned as boundary objects that facilitated stakeholder collaboration. Although the collaboration appeared to be successful, we argue that building consensus, or understanding each other's perspectives, can improve the human-centeredness of mental health AI research. Based on the findings, we provide suggestions for human-centered mental health AI research, working with data donors as domain experts, making invisible work visible, and privacy implications.

User-Centered Development of a Patient Decision Aid for Choice of Early Abortion Method: Multi-Cycle Mixed Methods Study.

People seeking abortion in early pregnancy have the choice between medication and procedural options for care. The choice is preference-sensitive-there is no clinically superior option and the choice depends on what matters most to the individual patient. Patient decision aids (PtDAs) are shared decision-making tools that support people in making informed, values-aligned health care choices. We aimed to develop and evaluate the usability of a web-based PtDA for the Canadian context, where abortion care is publicly funded and available without legal restriction. We used a systematic, user-centered design approach guided by principles of integrated knowledge translation. We first developed a prototype using available evidence for abortion seekers' decisional needs and the risks, benefits, and consequences of each option. We then refined the prototype through think-aloud interviews with participants at risk of unintended pregnancy ("patient" participants). Interviews were audio-recorded and documented through field notes. Finally, we conducted a web-based survey of patients and health care professionals involved with abortion care, which included the System Usability Scale. We used content analysis to identify usability issues described in the field notes and open-ended survey questions, and descriptive statistics to summarize participant characteristics and close-ended survey responses. A total of 61 individuals participated in this study. Further, 11 patients participated in think-aloud interviews. Overall, the response to the PtDA was positive; however, the content analysis identified issues related to the design, language, and information about the process and experience of obtaining abortion care. In response, we adapted the PtDA into an interactive website and revised it to include consistent and plain language, additional information (eg, pain experience narratives), and links to additional resources on how to find an abortion health care professional. In total, 25 patients and 25 health care professionals completed the survey. The mean System Usability Scale score met the threshold for good usability among both patient and health care professional participants. Most participants felt that the PtDA was user-friendly (patients: n=25, 100%; health care professionals: n=22, 88%), was not missing information (patients: n=21, 84%; health care professionals: n=18, 72%), and that it was appropriate for patients to complete the PtDA before a consultation (patients: n=23, 92%; health care professionals: n=23, 92%). Open-ended responses focused on improving usability by reducing the length of the PtDA and making the website more mobile-friendly. We systematically designed the PtDA to address an unmet need to support informed, values-aligned decision-making about the method of abortion. The design process responded to a need identified by potential users and addressed unique sensitivities related to reproductive health decision-making.

Impact of Shared Decision-Making on Opioid Prescribing Among Patients With Chronic Pain: A Retrospective Cohort Study

Shared decision-making (SDM) involving patient and physician is a desirable goal that is recommended in chronic pain management guidelines. This study measured whether SDM affects opioid prescribing frequency for chronic low back pain. A retrospective cohort study involving 1,478 participants was conducted within a national pain research registry. The patient participation and patient orientation (PPPO) scale of the Communication Behavior Questionnaire was used to measure SDM, including the classification of greater SDM (PPPO scale score ≥ 80) or lesser SDM (PPPO scale score < 80). Opioid prescribing frequency was measured at quarterly intervals from enrollment through 12 months. Baseline and longitudinal covariates were collected to adjust for potential confounding using generalized estimating equations. The mean age of participants was 53.1 (SD, 13.2) years, and 1,098 (74.3%) were female. A total of 473 (32.0%) participants were prescribed opioids at baseline. Participants completed 5,968 encounters wherein multivariable analyses demonstrated that PPPO scale scores were associated with more frequent opioid prescribing (β = .013; 95% CI, .005–.021; P < .001). Greater SDM was associated with more frequent opioid prescribing than lesser SDM (β = .441; 95% CI, .160–.722; P = .002). Opioids were prescribed in 34.3% versus 25.2% of encounters with greater versus lesser SDM (OR, 1.55; 95% CI, 1.17–2.06). SDM remained associated with more frequent opioid prescribing in a series of sensitivity analyses. Although SDM is desirable in chronic pain management, complex issues and challenging patient conversations may arise during serial assessments of the appropriateness of opioid therapy. Physicians need better education and training to address such difficult situations. PerspectiveThe more frequent use of opioid therapy among patients who reported greater SDM with their physicians underscores the need for better medical education and training in dealing with the complex issues and challenges pertaining to serial assessments of the appropriateness of opioid therapy for chronic pain.

The effects of virtual reality interventions on occupational participation and distress from symptoms in palliative care patients: A pilot study.

Virtual reality (VR) offers the prospect of a safe and effective adjunct therapeutic modality to promote mental health and reduce distress from symptoms in palliative care patients. Common physiological and psychological symptoms experienced at the end of life may impact the person's participation in day-to-day activities that bring them meaning. The purpose of this study was to examine the effect of VR interventions on occupational participation and distress from symptoms. To describe the stimulus, results, and learnings from a single-site pilot study of virtual reality therapy in a specialist palliative care setting. Participants engaged in a VR session lasting from 9 to 30 minutes related to coping with pain, inner peace and mindfulness, adventure, and bucket list. The pilot prospective quantitative observational cohort study was conducted from November 2021 through March 2022 using a pre-post VR intervention research design. Quantitative data was collected using patient-rated assessments and a wireless pulse oximeter. Occupational performance, satisfaction, and distress symptoms were measured using the Canadian Occupational Performance Measure and the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). The intervention and study design adhered to international guidelines. Ten participants engaged in the VR interventions. Data showed significantly improved occupational performance and satisfaction scores (p < .001), decreases in PCOC SAS distress from pain (p = .01), fatigue (p < .001), and heart rate (p = .018). No adverse side effects were observed. Outcomes included an analysis of virtual reality's effectiveness to alleviate symptom burden and increase occupational participation for palliative care patients. Of specific interest to the research team was the application of virtual reality in a community-based and inpatient palliative care context to supplement allied health services and its feasibility of integration into standard palliative care. VR therapy showed positive improvements in the participants' occupational performance, satisfaction, and distress from pain and fatigue.

“Let them be”: Family members' perspectives on the participation of advanced cancer patients in nursing research: A qualitative descriptive study

BackgroundRecruiting advanced cancer patients is crucial for nursing research in cancer care. However, nurse researchers often face various socio-cultural challenges, particularly in mainland China, where cultural taboos around death pose significant obstacles. An unexplored constraint in this context is the pivotal role Chinese family members play in patients' healthcare decision-making. This research gap underscores the need for a deeper understanding of Chinese family members' perspectives on the engagement of advanced cancer patients in nursing research. ObjectiveTo explore the perceptions and concerns of family members regarding the recruitment and participation of advanced cancer patients in nursing research. DesignA qualitative descriptive study was conducted. SettingsThree cancer hospitals in mainland China. ParticipantsA purposive sample of 18 family members, consisting of children or spouses of advanced cancer patients, was recruited as participants. MethodsSemi-structured interviews were conducted to collect data between September 2022 and January 2023. The thematic analysis method was used to analyze the data. ResultsThree themes were identified: The absence of prior participation, Family members' reluctance to facilitate patient involvement, and Strategies to encourage patients' future participation. Family members were hesitant to allow their relatives with advanced cancer to engage in nursing research, primarily due to concerns about distressing patients, the use of potential sensitive language, stigma, and the risks involved in participation. To address these concerns, they emphasized the importance of gaining family approval prior to patient enrolment. They highlighted the need of family involvement on behalf of sick relatives in research, advocating for the inclusion of a wide range of patients rather than targeting specific subgroups. They also reiterated the significance of choosing the right time for participation and avoiding using sensitive terms such as ‘cancer’, ‘dying’, and ‘death’ when engaging with patients. Moreover, they proposed the recruitment of patients by trusted professionals, shortening the duration of research activities and simplifying research procedures. ConclusionsThis study provides fresh insights into the perspectives of family members concerning the recruitment and engagement of advanced cancer patients in nursing research. It emphasizes the importance of addressing their concerns and recommendations, aiding nurse researchers in developing culturally sensitive recruitment strategies and fostering the inclusive participation of advanced cancer patients in nursing research within the context of family-centered care and cultural taboos surrounding death.

Breaking Barriers in Behavioral Change: The Potential of Artificial Intelligence-Driven Motivational Interviewing.

Patient outcomes in ophthalmology are greatly influenced by adherence and patient participation, which can be particularly challenging in diseases like glaucoma, where medication regimens can be complex. A well-studied and evidence-based intervention for behavioral change is motivational interviewing (MI), a collaborative and patient-centered counseling approach that has been shown to improve medication adherence in glaucoma patients. However, there are many barriers to clinicians being able to provide motivational interviewing in-office, including short visit durations within high-volume ophthalmology clinics and inadequate billing structures for counseling. Recently, Large Language Models (LLMs), a type of artificial intelligence, have advanced such that they can follow instructions and carry coherent conversations, offering novel solutions to a wide range of clinical problems. In this paper, we discuss the potential of LLMs to provide chatbot-driven MI to improve adherence in glaucoma patients and provide an example conversation as a proof of concept. We discuss the advantages of AI-driven MI, such as demonstrated effectiveness, scalability, and accessibility. We also explore the risks and limitations, including issues of safety and privacy, as well as the factual inaccuracies and hallucinations to which LLMs are susceptible. Domain-specific training may be needed to ensure the accuracy and completeness of information provided in subspecialty areas such as glaucoma. Despite the current limitations, AI-driven motivational interviewing has the potential to offer significant improvements in adherence and should be further explored to maximally leverage the potential of artificial intelligence for our patients.

Patient and pharmacist perspectives on opioid misuse screening and brief interventions in community pharmacies

BackgroundPharmacy-based screening and brief interventions (SBI) offer opportunities to identify opioid misuse and opioid safety risks and provide brief interventions that do not overly burden pharmacists. Currently, such interventions are being developed without patient input and in-depth contextual data and insufficient translation into practice. The purpose of this study is to qualitatively explore and compare patient and pharmacist perceptions and needs regarding a pharmacy-based opioid misuse SBI and to identify relevant SBI features and future implementation strategies.MethodsUsing the Consolidated Framework for Implementation Research, we conducted semi-structured interviews with 8 patients and 11 pharmacists, to explore needs and barriers to participating in a pharmacy-based SBI. We recruited a purposive sample of English-speaking patients prescribed opioids for chronic or acute pain and pharmacists practicing in varied pharmacies (small independent, large-chain, specialty retail) settings. We used an inductive content analysis approach to analyze patient interview data. Then through a template analysis approach involving comparison of pharmacist and patient themes, we developed strategies for SBI implementation.ResultsMost patient participants were white, older, described living in suburban areas, and were long-term opioid users. We identified template themes related to individual, interpersonal, intervention, and implementation factors and inferred applications for SBI design or potential SBI implementation strategies. We found that patients needed education on opioid safety and general opioid use, regardless of opioid use behaviors. Pharmacists described needing patient-centered training, protocols, and scripts to provide SBI. A short-self-reported screening and brief interventions including counseling, naloxone, and involving prescribers were discussed by both groups.ConclusionsThrough this implementation-focused qualitative study, we identified patient needs such as opioid safety education delivered in a private and convenient format and pharmacist needs including training, workflow integration, protocols, and a time-efficient intervention for effective pharmacy-based SBI. Alternate formats of SBI using digital health technologies may be needed for effective implementation. Our findings can be used to develop patient-centered pharmacy-based SBI that can be implemented within actual pharmacy practice.

Transition in enuresis patients: Identifying the gaps and opportunities for the future.

Nocturnal enuresis is generally considered a children's condition, yet it may persist 1%-2% in adolescence and early adulthood. Refractory patients often demand follow-up by multidisciplinary teams, which is only restricted to some of the expert tertiary centers. However, there are no standardized transition programs/guidelines when follow-up must be passed from pediatric to adult healthcare providers. To investigate this issue, we conducted a literature search on enuresis transition, which resulted in no articles. We, therefore, proceeded in a rescue search strategy: we explored papers on transition programs of conditions that may be related and/or complicated by enuresis, nocturia, or other urinary symptoms (chronic diseases, CKD, bladder dysfunction, kidney transplant, neurogenic bladder). These programs emphasize the need for a multidisciplinary approach, a transition coordinator, and the importance of patient and parent participation, practices that could be adopted in enuresis. The lack of continuity in enuresis follow-up was highlighted when we investigated who was conducting research and publishing on enuresis and nocturia. Pediatric disciplines (50%) are mostly involved in children's studies, and urologists in the adult ones (37%). We propose a stepwise approach for the transition of children with enuresis from pediatric to adult care, depending on the clinical subtype: from refractory patients who demand more complex, multidisciplinary care and would benefit from a transition coordinator up to children/young adults cured of enuresis but who persist in having or present lower urinary tract symptoms (LUTS)/nocturia later on. In any case, the transition process should be initiated early at the age of 12-14 years, with adequate information to the patient and parents regarding relapses or LUTS/nocturia occurrence and of the future treating general practitioner on the enuresis characteristics and comorbidities of the patient.

Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia.

Episodes of lucidity (ELs), characterized by spontaneous, transient recovery of abilities, are reported across neurological conditions, including advanced dementia. Despite the significance of these events, existing research is limited to retrospective reports. Approaches to prospectively capturing and characterizing ELs in dementia are lacking. This pilot study determined the feasibility and acceptability of a multifaceted observational protocol to capture, characterize, and validate ELs in individuals with advanced dementia in hospice. Feasibility was measured through enrollment/retention rates, workload/usability assessment of video observation, and data processing procedures to facilitate the measurement of verbal and nonverbal features for EL characterization. The acceptability of observation and informant validation procedures was qualitatively examined with clinician and family caregiver participants. Study procedures were endorsed as highly acceptable among clinician (N = 49) and caregiver (N = 16) participants, demonstrating higher than anticipated thresholds for observation duration. Enrollment and retention rates for patient participants (N = 6) were 100% and 84%, respectively. Workload and usability measures demonstrated low disruptiveness and high ease of use after training. Longitudinal video observation among individuals with advanced dementia in hospice care for the detection of lucidity was feasible and highly acceptable. Multidimensional, temporal coding of features of ELs is feasible but time-intensive.

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

BackgroundDuctal 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 I or II DCIS. Because DCIS grade is a major eligibility criteria in these trials, it would be very helpful to assess DCIS grade on mammography, informed by grade assessed on DCIS histopathology in pre-surgery biopsies, since surgery will not be performed on a significant number of patients participating in these trials.ObjectiveTo assess the performance and clinical utility of a convolutional neural network (CNN) in discriminating high-risk (grade III) DCIS and/or Invasive Breast Cancer (IBC) from low-risk (grade I/II) DCIS based on mammographic features. We explored whether the CNN could be used as a decision support tool, from excluding high-risk patients for active surveillance.MethodsIn this single centre retrospective study, 464 patients diagnosed with DCIS based on pre-surgery biopsy between 2000 and 2014 were included. The collection of mammography images was partitioned on a patient-level into two subsets, one for training containing 80% of cases (371 cases, 681 images) and 20% (93 cases, 173 images) for testing. A deep learning model based on the U-Net CNN was trained and validated on 681 two-dimensional mammograms. Classification performance was assessed with the Area Under the Curve (AUC) receiver operating characteristic and predictive values on the test set for predicting high risk DCIS-and high-risk DCIS and/ or IBC from low-risk DCIS.ResultsWhen classifying DCIS as high-risk, the deep learning network achieved a Positive Predictive Value (PPV) of 0.40, Negative Predictive Value (NPV) of 0.91 and an AUC of 0.72 on the test dataset. For distinguishing high-risk and/or upstaged DCIS (occult invasive breast cancer) from low-risk DCIS a PPV of 0.80, a NPV of 0.84 and an AUC of 0.76 were achieved.ConclusionFor both scenarios (DCIS grade I/II vs. III, DCIS grade I/II vs. III and/or IBC) AUCs were high, 0.72 and 0.76, respectively, concluding that our convolutional neural network can discriminate low-grade from high-grade DCIS.

Standardized Reproductive Endocrinology and Infertility Consultation for Pediatric and Adolescent Oncology Patients.

Purpose: To investigate the role of formal reproductive endocrinology and infertility (REI) consultation in fertility preservation counseling in a pediatric/adolescent oncology patient population. Methods: Retrospective chart review was performed at an academic adult hospital from 2021 to 2022. Pre- and postpubertal patients admitted to the pediatric/adolescent oncology service with cancer diagnoses and imminent gonadotoxic chemotherapy plans were included. Baseline characteristics were collected, including patient age, sex, race, language, insurance, and cancer diagnosis. Primary outcomes were formal REI consultation and fertility preservation election. Results: Nineteen of 58 eligible patients received a formal REI consultation. Patients were more likely to elect fertility preservation if they received a consult. Females were more likely to receive a consult than males and more likely to elect fertility preservation. Patients of age ≥16 years were more likely to receive consultation than younger patients. However, all patients of age <16 years who received a consult elected fertility preservation. There was no difference in consultation based on race, language, or insurance. Thirteen of 19 patients who received an REI consultation elected fertility preservation. Ten of 11 female elections were ovarian suppression, an unproven method of fertility preservation. The two male elections were semen cryopreservation. Conclusion: Underutilization of formal REI consults and a relative lack of proven fertility preservation elections may shed light on a need for increased fertility preservation awareness among young oncology patients and the providers who care for them. A streamlined process that automates formal REI consultation for all eligible patients may maximize the potential for comprehensive counseling and improve patient participation in fertility preservation.

Adapting standardized patient training to improve patients’ understanding and preparedness for health care encounters

ObjectiveTo examine the impact of standardized patient (SP) training on SPs' real-life healthcare encounters and explore whether SP training elements can be adapted to increase actual patients’ understanding, communication and participation in a patient-centered care model. MethodsData were collected from surveys and focus groups with standardized patients and a survey of primary care physicians. Findings were used to create an educational video with pre- and post-viewing surveys of patients’ understanding of engagement strategies and plans to use them in future encounters. ResultsSPs reported medical visits were more productive because of their ability to understand the visit’s framework; crediting their SP training. Patients reported the video will help in planning future medical visits by providing information that increases their understanding of their role in the care process. ConclusionsSPs’ understanding of the visit and its impact on knowledge, skills and affective domains can be transferred to patients in the form of specific strategies that enhance communication and patient participation during medical visits. Practice ImplicationsA brief educational intervention for patients using SPs’ understanding of the medical visit may contribute to enhanced patient participation in future health care encounters and could increase patient engagement in patient-centered models of care.

Real-World Data and Evidence in Lung Cancer: A Review of Recent Developments.

Conventional cancer clinical trials can be time-consuming and expensive, often yielding results with limited applicability to real-world scenarios and presenting challenges for patient participation. Real-world data (RWD) studies offer a promising solution to address evidence gaps and provide essential information about the effects of cancer treatments in real-world settings. The distinction between RWD and data derived from randomized clinical trials lies in the method of data collection, as RWD by definition are obtained at the point of care. Experimental designs resembling those used in traditional clinical trials can be utilized to generate RWD, thus offering multiple benefits including increased efficiency and a more equitable balance between internal and external validity. Real-world data can be utilized in the field of pharmacovigilance to facilitate the understanding of disease progression and to formulate external control groups. By utilizing prospectively collected RWD, it is feasible to conduct pragmatic clinical trials (PCTs) that can provide evidence to support randomized study designs and extend clinical research to the patient's point of care. To ensure the quality of real-world studies, it is crucial to implement auditable data abstraction methods and develop new incentives to capture clinically relevant data electronically at the point of care. The treatment landscape is constantly evolving, with the integration of front-line immune checkpoint inhibitors (ICIs), either alone or in combination with chemotherapy, affecting subsequent treatment lines. Real-world effectiveness and safety in underrepresented populations, such as the elderly and patients with poor performance status (PS), hepatitis, or human immunodeficiency virus, are still largely unexplored. Similarly, the cost-effectiveness and sustainability of these innovative agents are important considerations in the real world.

Using the benefit-harm trade-off method to determine the smallest worthwhile effect of intensive motor training on strength for people with spinal cord injury

Study designInterviews using the benefit-harm trade-off method and an online survey.ObjectivesTo determine the smallest worthwhile effect (SWE) of motor training on strength for people with spinal cord injury (SCI).SettingSCI units, Australia.MethodsForty people with recent SCI who had participated in motor training as part of their rehabilitation program (patient participants) and 37 physiotherapists (physiotherapist participants) working in SCI were recruited. The patient participants underwent an iterative process using the benefit-harm trade-off method to determine the SWE of motor training on strength. The physiotherapist participants were given an online survey to determine the SWE for five different scenarios. Both groups considered the SWE of a physiotherapy intervention involving an additional 12 h of motor training for 10 weeks on top of usual care. They were required to estimate the smallest improvement in strength (points on the Total Motor Score of the International Standards for Neurological Classification of SCI) to justify the effort and associated costs, risks or inconveniences of the motor training.ResultsThe median (interquartile range) smallest improvement in strength that patient and physiotherapist participants deemed worth the effort and associated costs, risks or inconveniences of the motor training was 3 (1–5) points, and 9 (7–13) points, respectively.ConclusionsPeople with recent SCI are willing to devote 12 h a week for 10 weeks to motor training in addition to their usual care to gain small changes in strength. Physiotherapists wanted to see greater improvements to justify the intervention.

National Estimates of the Participation of Patients With Cancer in Clinical Research Studies Based on Commission on Cancer Accreditation Data.

National estimates of cancer clinical trial participation are nearly two decades old and have focused solely on enrollment to treatment trials, which does not reflect the willingness of patients to contribute to other elements of clinical research. We determined inclusive, contemporary estimates of clinical trial participation for adults with cancer using a national sample of data from the Commission on Cancer (CoC). The data were obtained from accreditation information submitted by the 1,200 CoC programs, which represent more than 70% of all cancer cases diagnosed in the United States each year. Deidentified, institution-level aggregate counts of annual enrollment to treatment, biorepository, diagnostic, economic, genetic, prevention, quality-of-life (QOL), and registry studies were examined. Overall, study-type estimates for the period 2013-2017 were estimated. Multiple imputation by chained equations was used to account for missing data, with summary estimates calculated separately by type of program (eg, National Cancer Institute [NCI]-designated cancer centers) and pooled. The overall estimated patient participation rate to cancer treatment trials was 7.1%. Patients with cancer participated in a wide variety of other studies, including biorepository (12.9%), registry (7.3%), genetic (3.6%), QOL (2.8%), diagnostic (2.5%), and economic (2.4%) studies. Treatment trial enrollment was 21.6% at NCI-designated comprehensive cancer centers, 5.4% at academic (non-NCI-designated) comprehensive cancer programs, 5.7% at integrated network cancer programs, and 4.1% at community programs. One in five patients (21.9%) participated in one or more cancer clinical research studies. In a first-time use of national accreditation information from the CoC, enrollment to cancer treatment trials was 7.1%, higher than historical estimates of <5%. Patients participated in a diverse set of other study types. Contributions of adult patients with cancer to clinical research is more common than previously understood.

Social participation of rheumatoid arthritis patients: Does illness perception play a role?

Social participation is an important aspect associated with health-related outcomes in chronic diseases. However, little is known about the factors that may affect participation in patients with rheumatoid arthritis (RA). We aimed to examine whether pain, fatigue, anxiety, depression, and illness perception are associated with social participation in patients with RA when controlled for clinical and sociodemographic variables. We also analysed the mediating role of illness perception in the association between physical and psychological variables on social participation. We included 157 RA patients (84.7% females; mean age 56.4 ± 13.9 years) who completed the Participation Scale, Brief Illness Perception Questionaire, Generalized Anxiety Disorder Scale, Patient Health Questionnaire, 36-item Short Form Health Survey, and the Visual Analogue Scale. Multiple linear regressions and mediation analyses were used to analyze the data. In the final regression models, illness perception (β = .42; p ≤ .001) and functional disability (β = .21; p ≤ .05) were associated with social participation. Income (β = -.18; p ≤ .05) lost its significance when physical variables were added to the model, and pain (β = .24; p ≤ .05) and fatigue (β = -.24; p ≤ .05) when psychological distress was added. No significant role of anxiety, depression, disease activity, or age was identified using regression analyses. Illness perception mediated the association of pain, fatigue, anxiety, and depression with social participation, and the indirect effect varied from 65% to 98%. Illness perceptions may significantly diminish the impacts of pain, fatigue, anxiety, and depression on social participation in individual RA patients. Therefore, RA patients could benefit from psychological interventions aimed at tackling negative illness perceptions. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Patient and Caregiver Perceptions of an Interface Design to Communicate Artificial Intelligence-Based Prognosis for Patients With Advanced Solid Tumors.

Use of artificial intelligence (AI) in cancer care is increasing. What remains unclear is how best to design patient-facing systems that communicate AI output. With oncologist input, we designed an interface that presents patient-specific, machine learning-based 6-month survival prognosis information designed to aid oncology providers in preparing for and discussing prognosis with patients with advanced solid tumors and their caregivers. The primary purpose of this study was to assess patient and caregiver perceptions and identify enhancements of the interface for communicating 6-month survival and other prognosis information when making treatment decisions concerning anticancer and supportive therapy. This qualitative study included interviews and focus groups conducted between November and December 2022. Purposive sampling was used to recruit former patients with cancer and/or former caregivers of patients with cancer who had participated in cancer treatment decisions from Utah or elsewhere in the United States. Categories and themes related to perceptions of the interface were identified. We received feedback from 20 participants during eight individual interviews and two focus groups, including four cancer survivors, 13 caregivers, and three representing both. Overall, most participants expressed positive perceptions about the tool and identified its value for supporting decision making, feeling less alone, and supporting communication among oncologists, patients, and their caregivers. Participants identified areas for improvement and implementation considerations, particularly that oncologists should share the tool and guide discussions about prognosis with patients who want to receive the information. This study revealed important patient and caregiver perceptions of and enhancements for the proposed interface. Originally designed with input from oncology providers, patient and caregiver participants identified additional interface design recommendations and implementation considerations to support communication about prognosis.

Methods and experiences of a collaborative research project carried out by academic clinical researchers and experts by experience

Introduction Patient or service user participation in research and development is seen as essential in health research, including in topics within psychiatry. The process and depth of research collaboration can vary and is not always described adequately.Objectives The objective is to describe the collaborative methods and the experiences of experts by experience and academic researchers in a research project on patients’ experiences of remote care in psychiatric settings during and after the COVID-19 pandemic.MethodsWe describe our collaborative methods and experiences using the INVOLVE key features (www.involve.nihr.ac.uk).ResultsCollaboration started with an open discussion on research aims and role definitions. Collaborative methods included teaching and training sessions on interview methodologies, collaboratively writing and evaluating documents for ethical approval and research permission, collaboratively planning the recruitment process, preparation, and conducting research interviews and analysis. On-line and in-person meetings have been essential for an an-going dialogue and reflection. The methods and experiences are described in more detail in Table 1. Openness and building trust have been important and time was needed to achieve these. All academic researchers had been actively working with experts by experience in the clinical settings before the research project. The collaboration in the current study has emphasized the need for active involvement of experts with experience throughout the research process. For the experts by experience, the project has provided new insight into academic research and given them confidence in their ability to participate meaningfully in a collaborative study project. The academic researchers valued the sense of significance of the research topic and shared decision-making that the collaboration has brought into the project.Image:ConclusionsCollaborative research needs time to build trust and to clearly define the roles of participants, from the opening stage of the process. Continuous learning during the research process is emphasized. Since different research methodologies arise from various theoretical backgrounds, we suggest adding a topic on research theory to the INVOLVE key features.Disclosure of InterestNone Declared

Prehabilitation through physical activity in oncology

It has now been established that preoperative physical activity plays an essential role in minimizing postoperative complications. Patients who have undergone physical preparation recover their preoperative abilities more quickly. However, only about a third of those with access to such preparation report an improvement in their physical abilities. The modalities of intervention and follow-up, such as the training load and the generic format of the proposed sessions, seem to hinder patient participation in these programs, thus explaining the mixed results. In this context, it seems necessary to individualize prehabilitation in order to improve the functional capacities of people in this phase or in the phase of accelerated recovery after treatment or surgery.

Views of admitted palliative care patients and their clinicians on corneal donation discussions: a qualitative content analysis of semi-structured interviews

BackgroundThere is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units.MethodsA qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia.ResultsVery few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur.ConclusionsFindings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.