Patients Participated Research Articles

Assessing the sensitivity and acceptability of the Royal Marsden Palliative Care Referral “Triggers” Tool for outpatients with cancer

PurposeTo evaluate the use, acceptability, and experience of a seven-item palliative care referral screening tool in an outpatient oncology setting.MethodsA two-phase convergent parallel mixed-methods study. Patient participants who met any of the “Royal Marsden Triggers Tool” criteria were compared with those who did not in terms of demographic data, palliative care needs (Integrated Palliative Outcome Scale, IPOS) and quality of life indicators (EORTC-QLQ-C30).In-depth interviews were carried out with patients and oncology staff about their views and experience of the “Royal Marsden Triggers Tool”. Qualitative and quantitative data were triangulated at data interpretation.ResultsThree hundred forty-eight patients were recruited to the quantitative phase of the study of whom 53% met at least one of the Triggers tool palliative care referral criteria. When compared with patients who were negative using the Triggers tool, “Royal Marsden Triggers Tool” positive patients had a lower quality of life (EORTC QLQ-C30 Global Health Status scale (p < 0.01)) and a higher proportion had severe or overwhelming physical needs on IPOS (38% versus 20%, p < 0.001). Median survival of “Royal Marsden Triggers Tool” positive patients was 11.7 months.Sixteen staff and 19 patients participated in qualitative interviews. The use of the tool normalised palliative care involvement, supporting individualised care and access to appropriate expertise.ConclusionThe use of a palliative care referral tool streamlines palliative care within oncology outpatient services and supports teams working together to provide an early holistic patient-centred service. Further research is needed to evaluate the effectiveness and feasibility of this approach.

Patient Participation in Medication Safety for Noncommunicable Diseases: A Qualitative Study of General Practitioners, Pharmacists, and Outpatients' Perspectives in Beijing.

Our study aimed to explore the current status of patient participation in medication safety from the perspectives of general practitioners (GPs), pharmacists, and outpatients in Beijing, China. A qualitative study using semi-structured in-depth individual interviews with GPs, pharmacists, and outpatients. Subjects were identified by purposive sampling until code saturation. Semi-structured qualitative interviews were conducted with GPs, pharmacists, and patients from community health service centers in three urban districts of Beijing, China. The interviews were transcribed verbatim and the text was analysed using thematic analysis techniques including familiarising with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. A total of eight GPs, seven pharmacists, and 18 outpatients were interviewed. Data analysis led to the generation of five key themes: (1) mutual trust between patient and GP, (2) communication with healthcare professionals, (3) acquisition of knowledge about medication safety, (4) implementation of medication self-management at home, and (5) different attitudes toward participation in medication decisions. Patients participated in medication safety in multiple ways. However, insufficient knowledge about medication safety, lack of awareness of the patient's role in ensuring medication safety, shortage of consultation lengths, and being misled by some information were problems with patient participation in medication safety. This exploratory study contributes to our initial understanding of patient participation in medication safety. There were still many issues and barriers in the process of patient participation. Appropriate policies and measures, such as providing various forms of patient education, ensuring sufficient physician-patient communication, giving full play to the role of pharmacists, and making judicious use of digital health tools should be taken to improve medication safety by fully utilising the role of patients.

Reducing the Gap in Knowledge and Expectations between Clinicians and People with Polycystic Ovary Syndrome or Adrenal Conditions: Simulation via Instant Messaging—Birmingham Advance: Patient and Public Involvement (SIMBA-PPI) Study

BackgroundTo evaluate the efficacy of SIMBA as an educational intervention for both HCPs and people with either PCOS or adrenal conditions and to study the change in knowledge of people with PCOS or adrenal conditions about the conditions and expectations from the HCPs involved in their care following SIMBA-PPI sessions.MethodsTwo SIMBA-PPI sessions (SIMBA-PPI Polycystic ovary syndrome (SIMBA-PCOS) and SIMBA-PPI Adrenal conditions (SIMBA-Adrenal conditions)) were conducted in September 2021 and March 2022. In both sessions, HCPs interacted with moderators on patient management through WhatsApp. Patients with respective conditions underwent workshop-style learning in the same cases. SIMBA-PCOS transcripts were also translated into Brazilian Portuguese and workshops were held in both Brazilian Portuguese and English. The two groups (HCPs and patients) were then brought together to discuss exploring gaps in knowledge and expectations. The Wilcoxon Signed-Rank test compared differences in pre- and post-SIMBA self-reported confidence levels in HCPs and patients. Qualitative data from the online recordings were transcribed and analysed with inductive thematic analysis to identify gaps in knowledge and expectations from managing the cases.Results48 HCPs and 25 patients participated in our study. When compared to pre-SIMBA confidence levels, SIMBA-PPI sessions effectively improved clinicians’ confidence in managing PCOS (40.5%, p < .001) and adrenal conditions (23.0%, p < .001) post-SIMBA. Patient participants’ confidence in HCPs significantly increased in the PCOS session (SIMBA-PCOS: 6.25%, p = 0.01).ConclusionsIntegration of PPI into SIMBA improved HCPs' confidence in managing PCOS and adrenal conditions. SIMBA-PPI also improved patients’ confidence in HCPs. Our findings suggest that participating in SIMBA-PPI sessions can reduce the gap in knowledge and expectations between patients and HCPs involved in their care.

Engagement of culturally diverse communities in primary care research.

The underrepresentation of ethnic minorities and low-income groups in primary care (PC) research hinders the development of effective treatments for diverse populations. To develop a framework that general practice staff and researchers can use to improve the participation of underserved groups in PC research. This study was undertaken across 10 GP practices in South London serving 150 658 patients. Practices are distributed across ethnically diverse and highly deprived communities. A mixed-methods approach was utilised. Retrospective data were collected on patient participation in research studies across the practices between July 2022 and July 2023. Professional and patient focus groups, and a patient questionnaire, were undertaken to understand awareness and knowledge of, enablers for, and barriers to research participation. Over the 12-month period, 627 patients participated in PC research studies across the 10 practices. Black African and Black Caribbean patients accounted for 26% of the practices' patient population but were significantly underrepresented in research, comprising only 11% of participants. Patients of Asian backgrounds accounted for 11% of the practices' population but made up 20% of research participants. Lack of awareness of research participation opportunities, fear of side effects, language barriers, and mistrust of researchers were some of the barriers to participation. Participants highlighted that trust in their GP, education, and transparency of research processes were key to building long-term engagement. This study provides insights into poor recruitment of specific ethnic minorities into primary care studies. The authors identified adaptations to research engagement activities, which are required to ensure that participation is improved.

Treatment confidence and patient participation in multidisciplinary tumor conferences: A structural equation modeling approach.

Multidisciplinary tumor conference (MTC) is a key instrument in multidisciplinary cancer care. In recent years, if and how patient participation in MTC can contribute to a more patient-centered care have been scientifically discussed. This study aimed to identify determinants of treatment confidence in the context of patient participation in MTC. Therefore, the association among health literacy-sensitive communication, trust in health-care providers (HCP), and treatment confidence is examined. This study used data from the multicenter, observational study "PINTU" on patient participation in MTC. Data were collected from November 2018 to February 2020. Validated scales for treatment confidence, health literacy-sensitive communication, and trust in providers were included in the structural equation modeling (SEM) analysis. A total of 95 patients participated in MTC. The sample compromised n = 80 completed datasets. The SEM fit measures indicated good fit of the proposed model. The analysis showed a positive association between health literacy-sensitive communication and treatment confidence when adding the mediating effect of trust in providers. Patient-centered communication during MTC in combination with a trustful relationship between participating patients and health-care providers is positively associated with treatment confidence. The results indicated the relevance of a trustful doctor-patient communication and relationship. Trainings for physicians targeting patient-centered communication could be a promising approach to strengthen patient participation.

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.

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.

Patient perception of group consultations for knee osteoarthritis and influence of area-level deprivation: A service evaluation in a physiotherapy musculoskeletal setting.

Group consultations are considered valuable for managing musculoskeletal (MSK) conditions. This service evaluation aimed to assess the perception of knee osteoarthritis (OA) patients regarding group consultations in NHS Lanarkshire's MSK service. It also explored the impact of area-level deprivation on patient engagement. Surveys were developed to gauge patient satisfaction, preferences, and experiences in virtual and face-to-face (FTF) group consultations. Patients were categorised into opt-out, did not attend (DNA), or opt-in groups. We used the Scottish Index of Multiple Deprivation for area-level deprivation analysis. Descriptive statistics were used for quantitative data, while qualitative data were thematically analysed. A total of 84 patients participated, and area-level deprivation was similar across groups. Common engagement barriers included disinterest and transportation issues in opt-out and DNA groups, and IT problems in the DNA virtual group. Most patients expressed a preference for one-on-one consultations. FTFopt-in patients reported high satisfaction and increased confidence in managing their condition post-consultation. Virtual opt-in patients had a more neutral satisfaction level and mixed confidence. They were also less comfortable interacting with others during the consultation. Thematic analysis revealed positive experiences, and areas for improvement such as individual privacy concerns and additional resources. Overall, patients were generally satisfied with group consultations for knee OA. The evaluation identified strategies to enhance engagement. Area-level deprivation did not significantly impact patient participation in group consultations.

Breaking the digital gap to reduce cardiovascular risk in primary care

Objective: The goal of this study was to report on the development and early usability of a new interactive mHealth app for reducing cardiovascular risk in primary care patients of low socioeconomic status attending clinics in Chile. Design: Mixed-methods design with qualitative and quantitative components. Setting: Three Chilean primary care clinics located in one urban (Santiago) and two rural areas (San Clemente and Chiguayante). Each clinic serves a population of about 24,000 people of generally low socioeconomic status with an average of 8.5 years of education. Methods: A qualitative co-design participatory framework was used to develop the Mi Salud-APS mHealth app. Three iterations of virtual workshops were held with healthcare providers and patient participants to develop the new app. Once developed, the usability phase identified, invited and followed up for 3 months a sample of primary care patients with moderate ( N = 119) or high ( N = 329) cardiovascular risk. Results: A total of 24 healthcare providers and 24 patients participated in the developmental workshops. Three emergent categories represented the core attributes for the mHealth app design: ‘Friendly’, ‘Interactive’ and ‘Pertinent’. In the usability phase of the sample of 448 patients, 98% downloaded the app, and 64.6% of them logged in and used it for an average of 1.46 (0.5–10) times weekly. Conclusion: Findings suggest that patient and healthcare provider contributions to the development of the mHealth app accurately reflect the interests and experiences of both groups and together helped achieve the high usability levels observed among primary care patients enrolled in clinics in underserved communities.

A Web-Based Cancer Self-Management Program (I-Can Manage) Targeting Treatment Toxicities and Health Behaviors: Human-Centered Co-design Approach and Cognitive Think-Aloud Usability Testing.

Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users. We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2). We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ). In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed "chapters"), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all key stakeholders reviewed each chapter of the program and approved revisions. Results of the PSSUQ (mean total score: 3.75) completed following the cognitive think-aloud process (n=5) suggest patient satisfaction with the usability of I-Can Manage. The I-Can Manage program has the potential for activating patients in self-management of cancer and treatment toxicities but requires testing in a larger randomized controlled trial.

Sports Participation and Sports-Related Neurologic Injuries in Pediatric Patients With Arachnoid Cysts.

Currently, there is no consensus recommendation regarding the safety of sports participation for pediatric patients with arachnoid cysts (ACs). To prospectively survey patients with ACs to define the risk of sports-associated neurologic injury in untreated and treated patients. A prospectively administered survey was given to all patients diagnosed with an AC who presented to a single pediatric neurosurgery clinic between December 2010 and December 2021. Data were recorded on demographic information, imaging characteristics, treatment, sports participation, and presence of sports-related neurologic injury. The type and date of surgery for the AC were noted if surgery was performed. Of the 303 patients with completed surveys, 189 patients participated in sports, and 94 patients had prospective data available. There was no significant difference in cyst location or Galassi score between patients who did and did not participate in contact vs noncontact sports and those who did and did not experience a concussion. A cumulative total of 2700.5 seasons of sports were played (2499.7 in untreated and 200.8 in treated patients). There were 44 sports-related concussions among 34 patients: 43 in untreated patients and 1 in a treated patient. For all participants, the concussion rate was 16.3 per 1000 seasons of all sports and 14.8 per 1000 seasons of contact sports. The concussion rate after AC treatment was 4.9 per 1000 seasons of all sports. Three patients experienced sports-related AC rupture or hemorrhage, none of which required surgery or resulted in lasting neurologic symptoms or deficits. The rates of sports-related concussion and cyst rupture in patients with AC in both treated and untreated populations were low. We advocate for a generally permissive posture toward sports participation in this population.

Patient participation during discharge medication counselling: Observing real-life communication between healthcare professionals and patients

ObjectivesPrevious studies on hospital discharge showed limited patient involvement, despite its positive outcomes. In this study, provider-patient communication used to enhance patient participation during discharge medication counselling was examined. MethodsThis study comprises a qualitative descriptive observational study. Thirty-four discharge consultations were observed, audio recorded and analysed. We conducted a deductive analysis, elaborating on findings from earlier research. We selected themes and underlying codes illustrating professional-patient communication. For every theme, we identified examples to demonstrate its manifestation during discharge medication counselling. We also assessed what information healthcare professionals (HCPs) shared. ResultsHCPs used cues to increase patient participation, e.g. inquired about patient's preferences, showed empathy and support, and verified understanding of information shared. Patient participation occurred through asking questions, and expressing concerns. A central component in discharge medication counselling was the transmission of information from HCPs to patients. This resulted in HCPs taking a leading role. ConclusionsSeveral HCP cues were detected inviting patients to participate in consultations. Some patients participated in discharge medication counselling. This was influenced by timing of discharge consults, the performing HCP and presence of a relative. Practice implicationsHCPs shared a lot of information with patients. However, this does not automatically mean that patients will be able to understand and apply this information. HCPs should understand the importance of using cues to enable patient participation. One example is using the teach-back method for verifying patient understanding. It may also be desirable to ensure that a relative is present when discharge information is offered.

144 Sports Participation and Sports-Related Neurologic Injuries in Pediatric Patients With Chiari I Malformation

INTRODUCTION: Currently, there is no consensus recommendation regarding the safety of sports participation for pediatric patients with Chiari I malformation (CM-I). METHODS: A prospectively administered survey was given to 744 pediatric neurosurgery clinic patients at the University of Michigan between December 2010 and December 2021. Data were recorded on demographic information, imaging characteristics, treatment, sports participation, and presence of sports-related neurologic injury. Patients with incomplete survey data were called. Two hundred and seven patients completed at least 1 subsequent survey and were prospectively followed for a mean of 1.56 years. A season was defined as 3 months of sports play. RESULTS: Of the 744 patients with completed surveys, 462 patients participated in sports. Patients who participated in sports were more likely to be older at presentation (p &lt; 0.001) and have rounded cerebellar tonsil morphology (p &lt; 0.001). A cumulative total of 6,854.67 seasons of sports were played (5,918.67 prior to CM-I decompression (CMD) and 936 after). There were 84 sports-related concussions among 55 patients; 79 prior to CMD and 5 after CMD. The concussion rate was 12.25 per 1,000 seasons of all sports, 9.16 per 1,000 seasons of limited-contact sports and 13.76 per 1,000 of contact sports. The concussion rate after CMD was 5.34 per 1,000 seasons of all sports, 9.19 per 1,000 seasons of limited-contact sports and 7.09 per 1,000 seasons of contact sports. There were no reports of long-lasting neurologic issues post-concussion or of permanent spinal cord injury. CONCLUSIONS: There were no permanent or catastrophic sports-associated neurologic injuries reported in this study. The concussion rate in CM-1 patients before and after CMD were low and therefore sports participation in this population should not be counseled against.

Factors affecting sports participation after total hip arthroplasty.

The purpose of this study was to investigate the rate of return to sports after total hip arthroplasty (THA) in patients who regularly participate in sports and evaluate the factors that can affect the return to sports. In total, 165 patients who had been continuously participating in sports prior to surgery were included from a total of 401 patients who underwent THA from 2015 to 2018. The mean follow-up was 3.3 (range, 2-6) years. Demographics, medical history, surgical parameters, functional outcomes, and anxiety about complications at the final follow-up were compared between the patients who participated in the same sports as before surgery (S group) and those who could not (N group). The overall return to sports rate was 79% for 68 (41%) and 97 (59%) patients in the S and N groups, respectively. The most common sports that patients participated in post-operatively were walking (76 patients, 46%) and swimming (37 patients, 22%), followed by muscle training (25 patients, 15%). There were significant differences between the groups in the following patient factors: sex, primary disease, post-operative Japanese Orthopedic Association Hip-Disease Evaluation Questionnaire outcome, and anxiety about falls and dislocation. In the evaluation of factors affecting return to sports using logistic regression analysis, male sex (odds ratio 3.66, 95% confidence interval 1.13-11.19, p = 0.029) and anxiety of dislocation (odds ratio 3.42, 95% confidence interval 1.58-7.42, p < 0.01) were extracted as independent risk factors. Careful patient guidance and rehabilitation, in addition to accurate surgical procedures, will improve patient participation in sports.

Active Lifestyle in Patients with Hemophilia A or B with Inhibitors on Once-Daily Subcutaneous Concizumab Prophylaxis: Results from the Phase 3 explorer7 Study

Introduction: Concizumab is an anti-tissue factor pathway inhibitor (TFPI) monoclonal antibody, currently in clinical phase 3 trials as a once-daily subcutaneous prophylaxis for all hemophilia subtypes. Physical activity was historically discouraged in patients with hemophilia, but recent studies have reported improvements in proprioception, muscle strength and joint health with appropriate physical activities. Here we report, for the first time, results of an exploratory analysis on physical activity from the concizumab explorer7 study (NCT04083781) in patients with hemophilia A or B with inhibitors (HAwI/HBwI). Methods: In explorer7, patients from outside the concizumab program, as well as patients previously treated on-demand in explorer6 (NCT03741881; non-interventional study), were recruited and randomized 1:2 to no prophylaxis, who continued their on-demand treatment with a bypassing agent as usual (arm 1), or concizumab prophylaxis (arm 2).Physical activity data were collected using the ActiGraph tracker, which was worn on the patients’ non-dominant wrist. Patients were instructed to wear the tracker for two consecutive weeks prior to concizumab treatment start, if not already collected in explorer6 (baseline values) and for eight consecutive weeks at the end of the main part (≥32 weeks on concizumab prophylaxis). Analysis of covariance with treatment, type of hemophilia and bleeding frequency prior to screening as fixed effects and the respective baseline value as covariate, was used to compare the change in physical activity parameters from baseline to end of main part between groups. The patients were also interviewed about sport activity by site staff prior to concizumab treatment (baseline) and at the end of the main part to determine the patient's participation in low- (e.g., walking), moderate- (e.g., running/jogging) or high-risk (e.g., rugby) activities. Results: A total of 52 male patients with HAwI/HBwI were randomized to no prophylaxis (arm 1; n=19) and concizumab prophylaxis (arm 2; n=33). In total, 25 randomized patients were not included in this analysis (n=10 from arm 1 and n=15 from arm 2); 4 patients did not restart treatment following pause due to thromboembolic events in patients in explorer7 and 8, 6 patients were withdrawn, and 15 patients did not have data from baseline and/or the end of the main part of the study (e.g., broken device, device not being able to transfer data, patients forgetting to wear the device). Patients on concizumab prophylaxis had an increased percentage of awake time spent in moderate physical activity, and moderate-to-vigorous physical activity compared with patients on no prophylaxis (Table 1), with an estimated difference of 4.19% (95% confidence interval [CI]: 0.15-8.24; P=0.043) and 4.41% (95% CI: 0.38-8.44; P=0.033), respectively. For example, if the mean awake time was 12 hours, this translates to 30 minutes of moderate, or moderate-to-vigorous physical activity in patients on concizumab prophylaxis. Mean levels of physical activity relative to awake time were similar at baseline for both groups. Results of the sport activity ratings for patients who completed the main part of the study showed that at baseline, no patients reported participating in low-to-moderate, moderate, moderate-to-high or high-risk sports (Table 2). At the end of main part, patients participated in low-to-moderate-risk (1 patient; 7.7%), moderate-risk (1 patient; 7.7%) and moderate-to-high-risk (1 patient; 7.7%) sports in the concizumab prophylaxis group, and one patient (9.1%) participated in low-to-moderate-risk sports in the no prophylaxis group. Conclusion: Increased percentage awake time spent in moderate, or moderate-to-vigorous physical activity was observed in patients on once-daily, subcutaneous concizumab prophylaxis, with a significant estimated difference compared with patients with no prophylaxis. While the results should be interpreted with caution due to the smaller cohort of patients included in the current exploratory analysis, prophylactic treatments such as concizumab could encourage patients to spend more time engaging in physical activity that is also of appropriate (higher) risk, which could in turn improve their muscle strength and joint health. Changes in physical activity were also investigated in hemophilia patients without inhibitors in explorer8 phase 3 study. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

Benefits of Study Participation for Patients with Advanced Cancer Receiving Radiotherapy: A Prospective Observational Study.

Patients with advanced cancer and bone metastases may have unmet palliative care (PC) needs that go unnoticed during clinical oncological practice. This observational study describes interventions that were initiated as the patients participated in the Palliative Radiotherapy and Inflammation Study (PRAIS). It was hypothesized that the patients would benefit from study participation due to PC interventions initiated by the study team. A retrospective review of patients' electronic records. Patients with advanced cancer and painful bone metastases included in PRAIS were eligible. All patients met with the study team before start of radiotherapy, after completion of Patient Reported Outcome Measures. Interventions initiated by the study team were documented in the patients' electronic records. A total of 133 patients were reviewed: 63% males, mean (standard deviation [SD]) age 65 (9.6) and mean (SD) Karnofsky performance status (KPS) score 73.2 (9.1). Interventions were initiated in 50% (n = 67) of the patients. Changes in opioid management (69%), treatment of constipation (43%), and nausea (24%) and nutritional advice were most frequent (21%). Patients receiving interventions had lower mean KPS (70 vs. 77 p < 0.001), shorter survival time after study inclusion (median 28 vs. 57.5 weeks p = 0.005) and were more often opioid naïve (12% vs. 39% p < 0.001) than those not receiving interventions by the study team. Patients with advanced cancer and painful bone metastasis benefited from study participation due to multiple PC interventions initiated by the study team. The findings call for a systematic integration of PC in patients with advanced cancer. ClinicalTrials.gov NCT02107664.

P5.02: Impacts on NHS Renal Transplant Educational Service Delivery During the COVID-19 Global Pandemic

Introduction: During the current covid-19 global health pandemic the delivery esiting face-to-face patient healthcare education in extremely vulnerable patients has posed several challenges. Adaptations to the delivery of healthcare provisions have been vital to prevent unnecessary exposure of patients to risky hospital environements. Covid-19 created multiple constraints on patient care. This included our clinical teams own ability to interact directly with potential renal transplant recipients in the pre-existing conventional manner. Pre covid-19 pandemic, the renal transplant unit at Leicester General Hospital established comprehensive patient information sessions which were patient facing, forming the initial transplant recipient assessment process and the introduction for potential live kidney donors. However during the pandemic information sessions have unfortunately been postponed until the patient attends the transplant assessment clinic appointment with the surgeon, or when the potential live donor attends the hospital to be assessed by our live donor coordinator. To adhere to social distancing guidelines we developed and initiated a pilot programme for such patient’s which involved a structured virtual process delivered from an online platform. Methods: A Single centre study which involved patients attending in November 2020 accessing Microsoft Teams, listening to the live presentation from the lead transplant consultant and coordinators. The electronic equipment that patients required access to was either a laptop/computer or a smart mobile. The session allowed for live interaction and patient participation. Results: Initial pilot: 11 patients participated in the virtual session, 3 potential donor and recipient pairs. Patients included; either being assessed for suitability for renal transplantation or commencing the live donor work up process. Participants were asked to complete an online feedback survey following completion of the session. 8 questions were formally analysed, 72% answered. Patient outcome data supported the pilot study and patient feedback was favourable for this method. Conclusion: The pilot suggests that we have safely demonstrated that the delivery of healthcare can effectively be modified to safeguard patients, particularly those classified as extremely vulnerable, thus preventing unnecessary hospital exposure during the covid-19 global health pandemic. The delivery of patient facing care has successfully been adapted without compromising care standards.

Nursing staff facilitate patient participation by championing the patient's perspective: An action research study in spinal cord injury rehabilitation.

Persons with spinal cord injury have experienced a life-changing event, and they need to engage in the rehabilitation process to adjust to their current situation and future living conditions. Due to the highly contextual and varying psychological and physical ability to participate from patient to patient during rehabilitation, this is difficult for the injured person and for health professionals to support. Therefore, the aim of the study was to develop and facilitate patient participation by engaging nursing staff and from this engagement in the process, disclose methods to support participation. The processes conducted were based on an action research approach, from problem identification to the development, test and evaluation of four new nursing initiatives. The initiatives were developed by eight nursing staff members who participated actively as co-researchers in a 2-year study conducted at a Spinal Cord Injury Centre in Denmark from 2016 to 2018. Data evolved from workshops, transcriptions of meetings and written evaluations and was further analysed using Ricoeur's phenomenological-hermeneutic approach. Action research processes facilitated the development of four communicative initiatives and a shift in the nursing staff's support of the patient. In a collaborative process, the nursing staff acted as participants in the patient's rehabilitation. Awareness of the patient's perspective facilitated a caring, attentive and engaged approach from the nursing staff, which promoted rehabilitation tailored to the individual. Patient participation was enhanced when nursing staff actively participated in the development of initiatives and a culture supporting a person-to-person approach involving the patient and themselves as equal participants in the collaborative rehabilitation process. Eight nursing staff members from the rehabilitation centre participated throughout the study as co-researchers. Patients participated in observations and as informants in interviews during the first phase to identify challenges to patient participation. Patients also participated in testing the nursing initiatives during the action phase (Phase 3). Furthermore, a former patient was a member of the advisory board.

Disparities in cancer concerns in patients with gynecologic cancer on clinical trial compared to standard of care (587)

Disparities in cancer concerns in patients with gynecologic cancer on clinical trial compared to standard of care (587)

Creating opportunities for patient participation in managing medications across transitions of care through formal and informal modes of communication.

BackgroundCommunicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients' involvement in formal and informal modes of communication regarding managing medications.ObjectiveThe aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication.MethodsThe study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough's Critical Discourse Analysis.ResultsData analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients' medications across transitions of care and encouraged health professionals to seek out older patients' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters.ConclusionOlder patients' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients' key concerns about their medications, which hindered their active involvement in formal and informal communication.Patient or Public ContributionOlder adults, family members and health professionals volunteered to be interviewed and observed.