UNASSIGNED: To study the effect of informing patients with video before cardiac surgery on intensive care experience.
UNASSIGNED: This randomized controlled trial was conducted between December 2021 and December 2022 in the cardiovascular surgery clinic of a public hospital with the participation of 90 patients (45 patients in experimental group - 45 patients in control group) who were scheduled to undergo cardiac surgery. Patient Information Form and Intensive Care Experiences Scale were used for study data. Patients in experimental group were informed with video about the intensive care before cardiac surgery.
UNASSIGNED: It was found that the total score on ICES of the experimental group (74.5±3.9) was statistically and significantly higher than that of the control group (63.9±6.4) (p<0.001). The sub-dimension of awareness of surroundings (20.8±1.7), the frightening experiences (18.6±1.0), and the recall of experience (18.5±1.5) and satisfaction with care (16.7±1.4) were found to be statistically significantly higher in the experimental group, than in the control group sub-dimension scores (p<0.001).
UNASSIGNED: It was found that informing patients with video about the intensive care setting and process before cardiac surgery had a positive effect on the intensive care experience. Note: The study was produced from a master\'s thesis and was not presented. All participants gave informed consent for the study, and that their anonymity was preserved.Trial Registration NO.: NCT05255887.

UNASSIGNED: The participation of patients in clinical trials is crucial for the development of healthcare. There are several challenges in the recruitment of trial participants with acute medical conditions. The registry-based randomized DAPA-MI clinical trial recruited patients during hospitalization for myocardial infarction and provided study drugs in bottles with smart caps that used wireless technology to transmit monitoring data. This interview study aimed to investigate patients\' experience of participation in a clinical trial and their attitude to the new bottle cap technology.
UNASSIGNED: A subset of patients participating in the DAPA-MI trial were recruited from four hospitals in Sweden. Semi-structured interviews were conducted and analysed using manifest content analysis.
UNASSIGNED: Video interviews were performed including 21 patients (four women and 17 men). The median age was 59 years (range 44-80). Four categories of patients\' experiences were identified. A willingness to contribute consisted of patients\' positive attitudes to participation and to be a part of development and research. The perception of information emphasized the value of the oral information as well as the importance of time for reflection. Be in a vulnerable condition highlighted the impaired ability to perceive and remember in the acute medical condition. Adaptation to a new technology described the overall positive experiences of the smart bottle cap to evaluate adherence.
UNASSIGNED: Patients\' experiences of trial participation were in general positive but some challenges in the acute setting of a myocardial infarction were revealed. The smart bottle cap was well accepted, despite some handling difficulties.

OBJECTIVE: We sought to explore the lived experience of people with Debilitating Symptom Complexes Attributed to Ticks (DSCATT) to inform the development of a potential treatment intervention.
METHODS: We conducted one-to-one in-depth, semi-structured interviews with 13 people living in Australia affected by DSCATT. Interviews were transcribed and analysed using thematic analysis.
RESULTS: Although participants attributed the origin of their illness to tick bites, not all were adamant they had Lyme disease. Negative experiences in conventional healthcare were marked and were reported to exacerbate the impact of the illness and affect mental health. Further, these negative experiences propelled participants to seek unapproved treatments (by Australian standards). The desire for the illness to be acknowledged and causative agents identified was pronounced among the participant group.
CONCLUSIONS: Individuals with DSCATT experience significant challenges amid a contentious healthcare landscape surrounding chronic symptoms attributed to ticks in Australia. Our findings suggest the need for empathetic, supportive and patient-centred treatments for this cohort.
CONCLUSIONS: DSCATT results in a considerable burden across multiple domains for those affected. Negative experiences with healthcare exacerbate the suffering of people with DSCATT in Australia. New approaches that acknowledge the illness experience of people with DSCATT, alongside evidence-based treatments that encompass biopsychosocial models of care, are needed to tackle this debilitating condition.

BACKGROUND: Diuresis renography is a nuclear medicine examination that can distinguish between obstructive and non-obstructive uropathy. Renography has been investigated before, but not from a patient perspective. The aim of this study was to gain knowledge and understanding of patient experiences with the diuresis renography process.
METHODS: The study had a qualitative descriptive design; data was collected through semi-structured interviews with 17 adult patients that had recently undergone diuresis renography. The transcripts were analysed using inductive qualitative content analysis to identify their manifest and latent content.
RESULTS: One main theme was identified: \'Not smooth all the way through, but still in good hands\'. The participants understood the necessity of the performed renography and endured the examination despite its worrying elements. They were bothered by diuretic effects, worried about radioactivity and felt isolated during the imaging. The technologists\' caring and informative approach eased their experience. The main theme was identified from three subthemes: \'I experienced inconvenience\', \'I was worried\' and \'I felt safe\'.
CONCLUSIONS: The participants experienced worry throughout the renography process but were still satisfied with the examination, mostly because of the technologists being involved. Communication and interaction between patient and technologist are important for creating a good experience. Improved knowledge of patient experiences during renographies could be used to develop patient information and increase technologists\' awareness of factors patients may experience as troubling.
CONCLUSIONS: This study describes issues that contribute to both negative and positive experiences. Improved professional awareness and knowledge about these issues can contribute to the development of patient information and professional encounters, and may improve patients\' compliance and overall experience.

OBJECTIVE: Desmoid tumors are a rare and complex disease characterized by a great diversity in its forms, localizations, and prognosis. Both the disease and the treatment can have a significant impact on quality of life in patients. Given the complexity of the disease and its rarity, the literature on patients\' experience with the disease scarce. The purpose of this study is to investigate illness representations and subjective experience in participants affected with desmoid tumors.
METHODS: Telephonic semi-directive interviews were used in French patients over 18 years, diagnosed with desmoid tumor. Data were analyzed through a general inductive method to identify emergent general themes in participants\' discourse.
RESULTS: Participants (8 women, 7 men) in this study were aged between 27 and 71. The analysis revealed eight major themes relative to representations of illness and treatment, live with the illness, the impact of illness on relationships with others, the illness and medical pathways, and the identity changes caused by the illness. The two most salient themes were illness and treatment representations and life with the illness. Those themes were chosen for this study.
CONCLUSIONS: The results provide new insights on representation of and experience with desmoid tumors in patients. It brings arguments for the necessity of development wider systematic study to explore those variables in a larger sample during all the illness pathway. Indeed, this population meets particular issues appealing for the development of a specific psychosocial support.

Anifrolumab is a new therapeutic approach for individuals with systemic lupus erythematosus (SLE) directed at blocking the type 1 interferon pathway. Despite the expanding body of literature on Anifrolumab, an essential aspect remains absent: the subjective patient experience of treatment effects and implications on patients\' health-related quality of life (HRQoL). The present study aimed to fill this void by elucidating the nuanced perspectives of SLE patients receiving Anifrolumab treatment by conducting qualitative in-depth interviews (IDIs). SLE patients at Aarhus University Hospital who had received at least three infusions of Anifrolumab were approached for inclusion in the study, which comprised two main elements: (1) qualitative IDIs and (2) collection of patient data from electronic medical records (EMRs). The IDIs were semi-structured and based on a discussion guide that included open-ended and close-ended questions. Verbatim transcripts were coded and analysed using qualitative software to understand concepts important to patients and to understand patients\' own experiences before and after Anifrolumab therapy. A clinical chart review was conducted using EMR data at baseline, 3 months, and 6 months after Anifrolumab initiation. IDIs were completed with 14 patients, and EMR data was collected from 16 patients (treatment days range: 62-474). Of the 23 symptoms spontaneously reported by patients prior to Anifrolumab treatment, fatigue, joint pain, sun sensitivity, joint stiffness, skin rashes, and hair loss were the most common. Most symptoms improved, and none worsened during treatment. Patients reported significant impacts of disease on daily life before treatment: day-to-day activities, social life, emotional aspects, physical activity, concentration/memory, work/employment, and family/romantic relationships. Patients reported improvements in all aspects after treatment but were still impacted. From the EMR data, we observed a fall in disease activity after treatment initiation with a concomitant reduction in the use of corticosteroids. This study provides valuable insights into the subjective experiences of SLE patients treated with Anifrolumab, and the findings collectively contribute to a comprehensive understanding of the treatment\'s efficacy from the patients\' perspective and its tangible effects on both subjective and objective parameters in SLE patients.

BACKGROUND: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues.
METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis.
RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences.
CONCLUSIONS: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues.
UNASSIGNED: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.

OBJECTIVE: Dietitians have a central role in eating disorder (ED) treatment, however few studies exist investigating therapeutic aspects of dietetic care and factors influencing the dietitian-patient relationship. To address the gap, this study aimed to use a qualitative description approach to explore the experiences of delivering and receiving dietetic care in ED treatment in the UK.
METHODS: Semi-structured interviews were conducted with 6 specialist ED dietitians and focus groups with 11 recovered ED patients. Interviews were transcribed and inductive thematic analysis was performed to identify key themes describing the data.
RESULTS: Six key themes were generated: (1) Building trust, (2) Appropriate timing, (3) Adapting, (4) Dietitians as experts, (5) Boundaries, and (6) Difficult relationships. Participants highlighted the importance of building trust and considering nutritional risk and readiness in treatment approach. Patients expressed a desire for dietitians to have experience in EDs, facilitating understanding of their illness. However, dietitians identified the nature of EDs making their role challenging at times.
CONCLUSIONS: This study described various factors affecting dietetic care in EDs and provided a valuable insight into patients\' perceptions of treatment. The findings support advancements in ED dietitians\' knowledge and understanding, helping to enhance quality of care.

BACKGROUND: Cyclic vomiting syndrome (CVS) is an enigmatic and debilitating disorder of gut-brain interaction that is characterized by recurrent episodes of severe vomiting and nausea. It significantly impairs patients\' quality of life and can lead to frequent medical visits and substantial health care costs. The diagnosis for CVS is often protracted and complex, primarily due to its exclusionary diagnosis nature and the lack of specific biomarkers. This typically leads to a considerable delay in accurate diagnosis, contributing to increased patient morbidity. Additionally, the absence of approved therapies for CVS worsens patient hardship and reflects the urgent need for innovative, patient-centric solutions to improve CVS management.
OBJECTIVE: We aim to develop a digital patient assistant (DPA) for patients with CVS to address their unique needs, and iteratively enhance the technical features and user experience on the initial DPA versions.
METHODS: The development of the DPA for CVS used a design thinking approach, prioritizing user needs. A literature review and Patient Advisory Board shaped the initial prototype, focusing on diagnostic support and symptom tracking. Iterative development, informed by the design thinking approach and feedback from patients with CVS and caregivers through interviews and smartphone testing, led to significant enhancements in user interaction and artificial intelligence integration. The final DPA\'s effectiveness was validated using the System Usability Scale and feedback questions, ensuring it met the specific needs of the CVS community.
RESULTS: The DPA developed for CVS integrates an introductory bot, daily and weekly check-in bots, and a knowledge hub, all accessible via a patient dashboard. This multicomponent solution effectively addresses key unmet needs in CVS management: efficient symptom and impacts tracking, access to comprehensive disease information, and a digital health platform for disease management. Significant improvements, based on user feedback, include the implementation of artificial intelligence features like intent recognition and data syncing, enhancing the bot interaction and reducing the burden on patients. The inclusion of the knowledge hub provides educational resources, contributing to better disease understanding and management. The DPA achieved a System Usability Scale score of 80 out of 100, indicating high ease of use and relevance. Patient feedback highlighted the DPA\'s potential in disease management and suggested further applications, such as integration into health care provider recommendations for patients with suspected or confirmed CVS. This positive response underscores the DPA\'s role in enhancing patient engagement and disease management through a patient-centered digital solution.
CONCLUSIONS: The development of this DPA for patients with CVS, via an iterative design thinking approach, offers a patient-centric solution for disease management. The DPA development framework may also serve to guide future patient digital support and research scenarios.

UNASSIGNED: Community support programs can improve quality of life for people living with dementia and their care partners. Important to the successful implementation of such programs is close engagement with end-users to gain a better understanding of their needs. This study describes the perspectives of people living with dementia, care partners, and health-care providers on the First Link® dementia support program provided by the Alzheimer Society of British Columbia (ASBC).
UNASSIGNED: Following a large-scale survey (N=1,164), semi-structured interviews were conducted with participants to explore in greater detail the different needs and themes that emerged from the first phase of the study. The interviews explored: 1) experiences with the program; 2) future planning; 3) meaning of independence; and 4) impact of the program on emotional and physical well-being.
UNASSIGNED: A total of 48 participants were interviewed in this study. Knowledge and education were key factors that helped participants manage the impact of dementia. Learning about dementia, the experiences of others, strategies on how to manage symptoms, what to plan for in the future, and how to access different services in the community, was tied to increased feelings of confidence and comfort, and decreased stress. Participants also provided suggestions for improvement of the First Link® dementia program such as further embedding the program into the patient journey, providing more services in remote areas, providing education for health-care providers, and increasing awareness of the program.
UNASSIGNED: By emphasizing the lived experiences and needs of those living with dementia and their caregivers, this work will inform future research-based program evaluations globally and, in turn, improve the existing services to support people living with-and impacted by-dementia.