Understanding post-hospitalised patients' experiences of long-COVID - the PELCO study.

Despite significant advances in long COVID research, many aspects of the condition remain unknown. There is a persisting need for further research to improve the management of long COVID symptoms. This study aimed to explore the experiences and psychological needs of patients who were previously hospitalised with COVID-19, and who subsequently developed long COVID symptoms. Twelve patients with long COVID were interviewed between October 2021 and June 2022. Transcripts were analysed thematically. An overarching theme of 'Existential Crisis' was developed, incorporating three interconnecting sub-themes: 'Facing Psychological Threat', 'Seeking Legitimisation' and 'Forging a Path Through Uncertainty'. Findings suggest that the psychological impact of emergency hospitalisation for COVID-19 can be severe, particularly for those with ongoing long COVID symptoms, and that early psychological intervention should be available. Our findings also suggest the importance of further planning for future pandemics to ensure the presence of patient advocates during hospitalisation at points of critical decision-making.

Emphasizing Patient-Centricity Through a Tailored Training Program to Empower Patients, Advocates, and Ethics Committees in Good Clinical Practice.

OBJECTIVES: Good Clinical Practices (GCP) are essential for patient-centric research. The standard bioethics and GCP training emphasizing a "one-size-fits-all" approach may not adequately equip ethics committee members, especially the lay and social scientist members, towards their critical role in reviewing clinical trials and related documentation. This article explores a patient-centered, patient advocates-driven training program focused on raising awareness about research ethics and GCP among patients, advocates and ethics committee members. METHODS: A patient advocates-driven program called Patient Advocates for Clinical Research (PACER) conducted trainings focused on GCP for patient-centric research for patients, advocates and ethics committee members. Pre- and post-workshop questionnaires were used to assess the participants' knowledge of GCP. RESULTS: The workshop was attended by 116 participants. Of these 91 consented to participate in questionnaire evaluation that assessed participants' knowledge on ethics committee (EC) functionality, research ethics and data confidentiality. Pre-workshop evaluations highlighted knowledge gaps. Only 16.5% were familiar with the primary ethical consideration for vulnerable populations and 69.2% were knowledgeable about data governance. Post-workshop evaluations demonstrated significant overall response improvement of 5.4% (𝜒2=13.890; p<0.001). The understanding of ethical considerations for vulnerable populations rose by 15.4% (p=0.007), and knowledge of data privacy regulations improved by 11.0% (p=0.041). CONCLUSION: The workshop under PACER initiative highlighted the knowledge gaps in understanding the EC functionality, research ethics and data confidentiality. The workshop effectively fostered participants' understanding of ethical research practices.

MASCC 2023 Patient-Centered Antiemetic Guidelines and Education Statements: an evidence-based and consensus resource for patients.

PURPOSE: The Multinational Association of Supportive Care in Cancer (MASCC)/European Society of Medical Oncology (ESMO) Patient Antiemetic Guideline Committee aimed to (1) adapt the updated evidence-based, clinical guidelines to patient-centered antiemetic guidelines and (2) develop patient education materials and statements. METHODS: The MASCC 2023 Patient Antiemetic Guidelines were created and reviewed by antiemetic experts and patient advocates by incorporating the 2023 MASCC/ESMO antiemetic guidelines into patient-friendly language. Patient Education Statements were developed based on current literature and by utilizing an expert modified Delphi consensus (≥ 75% agreement). Patient advocate/focus group input and patient survey results were further integrated into Patient-Centered Antiemetic Guidelines and Education Statements. RESULTS: Patient-Centered Antiemetic Guidelines were created using patient-friendly language and visual slides. Patient-friendly language was also utilized to communicate the Educational Statements. Key content categories identified for the Educational Statements included the following: nausea/vomiting definitions, causes, risk factors, categories, complications, accompanying symptoms, prophylactic antiemetic treatment, general management, when to call/what to ask the healthcare team, what caregivers can do, and available resources. All identified content met the ≥ 75% expert agreement threshold. Fifteen (15) items demonstrated 100% agreement, 11 items achieved ≥ 90% agreement, and three content items demonstrated 80 ~ 82% agreement. CONCLUSIONS: The inaugural MASCC 2023 Patient Antiemetic Guidelines can help patients and caregivers understand the prevention of nausea and vomiting related to their cancer treatment. Educational Statements provide further patient information. Educating patients on how to utilize guideline antiemetics and the education statements can contribute improvements in the control of anticancer treatment-related nausea and vomiting.

The patient perspective on sirolimus for epithelioid hemangioendothelioma (EHE): results of a community survey highlighting the importance of equitable access to treatments.

Background: Epithelioid hemangioendothelioma (EHE) is an ultra-rare, vascular sarcoma with clinical presentation ranging from an indolent to an aggressive form. Over 50% of patients present with metastatic disease, requiring systemic therapy, although no systemic therapies are specifically approved for EHE. Retrospective evidence supports the activity of mTOR inhibitors (e.g. sirolimus), although available only off-label. EHE patients and advocates are therefore working to support approval of effective treatments by collecting data on patient perspectives and experiences. Materials and methods: In February 2023, the EHE Rare Cancer Charity (UK) and The EHE Foundation (US), with other advocates, conducted a survey of perspectives and experiences of EHE patients regarding the use and accessibility of sirolimus. The survey consisted of 20 questions designed for individuals undergoing treatment, those who had been treated, or had never been treated with the drug. Widely promoted within the patient community, the online survey categorized patients into three cohorts for the analysis: liver transplant patients, non-transplant patients who had ever taken sirolimus and sirolimus-naïve non-transplant patients. Results: The survey evaluated data from 129 patient responses from 21 countries, mostly from USA, UK, Australia, and Canada (70%). The liver transplant, sirolimus and non-sirolimus cohorts were 16%, 25% and 59%, respectively. In the sirolimus group 66% reported treatment durations exceeding one year, with 16% exceeding five years, indicating the drug's efficacy. In the non-sirolimus group, the drug was not available for 42% and for 11% sirolimus was available but not selected for treatment because of its off-label status. Overall, 87% of all patients across all cohorts expressed the importance of the drug's availability as hugely or very important. Conclusion: The survey responses highlight the activity of sirolimus for EHE and the importance of securing a label extension for the drug delivering equitable access to this treatment for patients.

'I felt part of the solution'. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain.

Objectives: To elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research. Design: reflexive thematic analysis from a critical realist perspective. Methods: Online interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively. Results: The relationship between patient advocates and the organisations they help is conceptualised as 'an unequal partnership'. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions). Conclusion: People with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development.

Lights and shadows in the early-onset colorectal cancer management and research: An integrative perspective - Physician scientist with patient advocates.

Early-onset colorectal cancer (age under 50 years) (EOCRC) is an entity of undeniable importance, both because of its growing incidence, and the population it affects. Other current reviews emphasize the essential points regarding the clinical management and knowledge of its molecular bases. However, we intend to go one step further. With the increased significance of patient participation and disease experience in mind, we have integrated the voice of the patient to show the weaknesses and the needs, and next steps in the advancement of knowledge and management of EOCRC. This integrative review of the different perspectives, clinical, research and the patients themselves, can therefore be defined as an integrative needs assessment. Hence, this may be a first step in working towards an essential homogeneity of definitions and action.

The role of patient advocates and sarcoma community initiatives in musculoskeletal oncology. Moving towards Evidence-Based Advocacy to empower Evidence-Based Medicine.

Musculoskeletal sarcomas are rare cancers that as the whole family of sarcomas pose several challenges at different levels, ranging from medical knowledge to clinical research and policymaking. Addressing these challenges, necessarily calls for the inclusion of patient perspective inside the decision-making processes of every area that contributes to treatment improvement, from the provision of high-quality services by healthcare organisations to research issues. Without patient-provided inputs to inform decisions, the current paradigm of patient-centred care makes no sense and sounds at the least irrational if not unethical. Putting PROMs on "centre stage" in cancer research and care, could allow to build a truly Evidence Based Advocacy (EBA) and therefore to empower Evidence Based Medicine (EBM).

Impact of Sexual Assault Survivor Identity on Patient Care in the Emergency Department.

Interactions between emergency department (ED) staff and sexual assault (SA) survivors can be a source of retraumatization for survivors, increasing their risk of posttraumatic stress and decreasing utilization of longitudinal medical care. Little is known about nationwide trends in ED staff attitudes and behaviors toward survivors, including the impact of survivor identity. We conducted a survey to determine if survivor identity influenced ED staff behaviors. A nationwide survey of SA patient advocates was conducted between June and August 2021. Advocates are volunteers or staff dispatched from rape crisis centers to support survivors during ED care. Advocates participated in an online survey to determine the frequency of observing six potentially retraumatizing provider attitudes and behaviors. Adaptive questioning was used to explore the impact of survivor identity on each attitude or behavior and which identity groups were more likely to be affected. Three hundred fifteen advocates responded to the survey. Less than 10% indicated that ED staff often or always convey disbelief or blame to survivors. Almost 75% of advocates indicated that they often or always observe ED staff showing empathy to survivors. Disparities were found in provider attitudes. Over 75% of advocates observed that survivors' mental health status or substance use impacted conveyed belief from providers. Patients who were intoxicated when assaulted, had psychiatric disorders, were Black, Hispanic/LatinX, or indigenous, or were not cis-females were more likely to experience disbelief. Patients who were white and/or cis-gender females were more likely to be pressured by ED staff to complete the forensic exam and/or report to the police. Our study documents disparities in ED staff behavior towards SA survivors according to survivor identity. Given that post-assault ED interactions are critical turning points in survivors' future medical processes, disparities in ED care may be linked to larger disparities in healing from trauma.

Patient Advocates' Perspectives on the Care of Sexual Assault Survivors in Chicago-Area Emergency Departments.

Emergency departments (EDs) providing care and forensic examinations for sexual assault (SA) survivors are often supported by SA patient advocates. This study explored advocates' perspectives regarding problems and potential solutions in SA patient care through a focus group with 12 advocates. Thematic analysis identified two major themes: provider-patient interactions and ED-hospital systems. Challenging aspects of provider-patient interactions included (a) provider attitudes and (b) disempowering behaviors. Within ED-hospital systems, themes included time constraints, efficiencies, and hospital preparation. Advocates surveyed were optimistic about an increased presence of SA nurse examiners and enhanced protocols and provider training to improve survivors' experiences.

'A platform for goodness, not for badness': The heuristics of hope in patients' evaluations of online health information.

Patient advocates and activists are increasingly relying on online health information that can assist them to manage their health condition. Yet once online, they will confront diverse information whose veracity and utility are difficult to determine. This article offers a sociological analysis of the practical methods, or heuristics, that patient advocates and activists use when making judgements about the credibility and utility of online information. Drawing on the findings from interviews with fifty Australian patient advocates and activists, it is argued that these individuals' use of these heuristics reflects their hopes that information can help them manage their condition which may, in some cases, override fears and uncertainties that arise during searches. The article identifies the common 'rules-of-thumb'-or what we call the 'heuristics of hope'-that patient advocates/activists may use to make judgements and highlights the dangers of over-reliance on them, especially regarding clinically unproven, potentially unsafe treatments. Analyses of the heuristics of hope, we conclude, can assist in understanding the dynamics of decision-making and the role that affect plays in online patient communities which is crucial in an age characterised by the rapid circulation of emotionally charged messages, often based on hope.