Assessing the Utility of a Patient-Facing Diagnostic Tool Among Individuals With Hypermobile Ehlers-Danlos Syndrome: Focus Group Study.

BACKGROUND: Hypermobile Ehlers-Danlos syndrome (hEDS), characterized by joint hypermobility, skin laxity, and tissue fragility, is thought to be the most common inherited connective tissue disorder, with millions affected worldwide. Diagnosing this condition remains a challenge that can impact quality of life for individuals with hEDS. Many with hEDS describe extended diagnostic odysseys involving exorbitant time and monetary investment. This delay is due to the complexity of diagnosis, symptom overlap with other conditions, and limited access to providers. Many primary care providers are unfamiliar with hEDS, compounded by genetics clinics that do not accept referrals for hEDS evaluation and long waits for genetics clinics that do evaluate for hEDS, leaving patients without sufficient options. OBJECTIVE: This study explored the user experience, quality, and utility of a prototype of a patient-facing diagnostic tool intended to support clinician diagnosis for individuals with symptoms of hEDS. The questions included within the prototype are aligned with the 2017 international classification of Ehlers-Danlos syndromes. This study explored how this tool may help patients communicate information about hEDS to their physicians, influencing the diagnosis of hEDS and affecting patient experience. METHODS: Participants clinically diagnosed with hEDS were recruited from either a medical center or private groups on a social media platform. Interested participants provided verbal consent, completed questionnaires about their diagnosis, and were invited to join an internet-based focus group to share their thoughts and opinions on a diagnostic tool prototype. Participants were invited to complete the Mobile App Rating Scale (MARS) to evaluate their experience viewing the diagnostic tool. The MARS is a framework for evaluating mobile health apps across 4 dimensions: engagement, functionality, esthetics, and information quality. Qualitative data were analyzed using affinity mapping to organize information and inductively create themes that were categorized within the MARS framework dimensions to help identify strengths and weaknesses of the diagnostic tool prototype. RESULTS: In total, 15 individuals participated in the internet-based focus groups; 3 (20%) completed the MARS. Through affinity diagramming, 2 main categories of responses were identified, including responses related to the user interface and responses related to the application of the tool. Each category included several themes and subthemes that mapped well to the 4 MARS dimensions. The analysis showed that the tool held value and utility among the participants diagnosed with hEDS. The shareable ending summary sheet provided by the tool stood out as a strength for facilitating communication between patient and provider during the diagnostic evaluation. CONCLUSIONS: The results provide insights on the perceived utility and value of the tool, including preferred phrasing, layout and design preferences, and tool accessibility. The participants expressed that the tool may improve the hEDS diagnostic odyssey and help educate providers about the diagnostic process.

What Matters to Patients on the Day of Surgery-A Flash Mob Study.

PURPOSE: To explore what matters to patients on the day of surgery, to describe how a flash mob study was conducted in a perioperative setting and to provide recommendations for future studies adopting the flash mob design. DESIGN: Flash mob study. METHODS: On June 6 to June 7, 2023, a 24-hour flash mob study was carried out in eight Danish perioperative units. Eligible for inclusion were adult patients scheduled for elective or acute surgery. After giving informed consent, patients answered two qualitative questions: what mattered to them on the day of surgery, and whether the staff were aware of this. Data were analyzed using content analysis. Patient characteristics were presented using descriptive statistics. FINDINGS: Patients expressed a need to feel safe and cared for, be informed, and to receive proper anesthesia and postoperative care. Twenty-nine percent had not told health care staff, most often because they had not been asked about what mattered to them and because they did not want to be a nuisance. CONCLUSIONS: The flash mob study was feasible and provided insight into patients' perspectives on the day of surgery. To gain insight into what matters on the day of surgery, health care professionals must actively ask patients. Furthermore, the flash mob proved to be an opportunity to create attention to what matters to patients on the day of surgery.

Fatigue Management in Advanced Prostate Cancer: Real-World Insights From Qualitative Interviews With Patients.

BACKGROUND: Patients with advanced prostate cancer (PC) commonly experience fatigue related to the disease itself and its treatment, which affects their quality of life. There are limited real-world data available on patients' experiences of fatigue while receiving PC treatment and its management. PATIENTS AND METHODS: This was a cross-sectional, noninterventional qualitative study involving individual concept-elicitation interviews with patients in the United States. Patients with advanced PC aged ≥18 years who had experienced fatigue and were on androgen-deprivation therapy in combination with second-generation androgen receptor pathway inhibitors were interviewed and their experiences quantified. RESULTS: Of the 143 patients screened, 13 qualified and 11 completed the interview. Most patients used the term "fatigue" (n = 8) to describe their experiences of tiredness, exhaustion, lack of energy, and weakness. Most patients (n = 8) did not receive any form of educational support from their healthcare providers (HCPs), but some expressed an interest in receiving this support (pamphlets, n = 4; discussion with HCPs, n = 4; online resources, n = 3). Most patients (n = 9) self-discovered fatigue-management strategies over the course of their disease and treatment. Patients found that rigorous exercise (n = 5), regular naps (n = 2), increased rest (n = 3), and a healthy diet (n = 3) were the most effective approaches for managing their fatigue. CONCLUSION: Tools are needed to support HCPs with counseling patients with PC for effective management of disease- and treatment-related fatigue.

At the tipping point: Patient experiences of addiction to benzodiazepines and motivation to seek treatment.

INTRODUCTION: Addiction to benzodiazepines is a serious problem, and it is important to better understand how individuals can be motivated to quit. Few studies have investigated patients' perceptions and experiences of addiction to benzodiazepines and there is a need to better understand the influence of motivational factors on treatment seeking. METHODS: In this qualitative study, nineteen adults undergoing treatment for addiction to benzodiazepines participated in semi-structured individual interviews which were analyzed using reflexive thematic analysis. RESULTS: Participants both defined addiction in relation to and found motivation to quit using benzodiazepines in the negative effects they experienced. Three themes were identified relating to a patient's journey towards a "tipping point" where they were motivated to seek treatment. Participants described that as their addiction grew, benzodiazepine use became a constant mental preoccupation resulting in the need to procure more medication. Participants faced a crossroads as their benzodiazepines became less effective, and many entered a negative cycle of dose escalation and withdrawal symptoms. Participants also described many negative impacts on psychosocial and practical aspects of their daily lives as they lost control to benzodiazepines. CONCLUSIONS: The results of this study provide insight to patient perspectives on benzodiazepine addiction and suggests that patients find motivation to quit when the consequences related to benzodiazepine use reach a tipping point. Motivation is of clinical importance in the decision to seek treatment, and by working to identify and cultivate individual motivational factors, healthcare providers may be able to help more patients recover from addiction to benzodiazepines.

Experiences of families post treatment for childhood brain tumours during medical clinic consultations regarding health-related quality of life, unmet needs and communication barriers: A qualitative exploration.

BACKGROUND: Many studies highlight poor health-related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations. AIM: To explore the experiences of families regarding communication with physicians about HRQoL issues during consultations after treatment for childhood brain tumours. METHODS: Interviews were conducted with 18 families of children and adolescents aged 8-17 years after completion of brain tumour treatment. Participants had completed treatment within the last 5 years and were receiving regular outpatient follow-up care. Thematic analysis was undertaken using the Framework Method. RESULTS: Five main themes were identified: (i) unmet emotional and mental health needs; (ii) double protection; (iii) unmet information needs; (iv) communication barriers within consultations; and (v) finding a new normal. CONCLUSION: There was a need to improve communication between clinicians and these families, improve information provision, and overcome barriers to conversing with children within these outpatient consultations. Children and their parents should be supported to voice their current needs and concerns regarding their HRQoL. These findings will inform further development of the UK version of the 'KLIK' patient- and parent-reported outcome (PROM) portal.

Experiences of Patients Undergoing Robot-assisted Cardiac Surgery: A Qualitative Study.

PURPOSE: Over the last two decades, the use of robotic surgery in cardiac procedures has become increasingly prevalent. Typically, assessments of patient outcomes for robot-assisted surgery concentrate on patient morbidity and mortality, surgical complications, and length of hospital stay. However, there is limited research on patients' perceptions of robot-assisted surgery. Therefore, this study aims to determine the experiences of patients undergoing robot-assisted cardiac surgery. DESIGN: The study used a qualitative design. METHODS: The study was conducted with 12 patients who underwent robot-assisted heart surgery at an educational and research hospital. Ethical approval and written informed consent were obtained before the study. FINDINGS: 66.7% of the participants were male with an average age of 38.25 ± 16.06 years. The analysis of qualitative data identified three themes: Robotic surgery, Post-Surgical Experience, and Homecoming. CONCLUSIONS: Patients expressed satisfaction with robotic surgery and recommended it to others undergoing surgery. Based on the findings, we may suggest that nurses may conduct personalized education programs about robotic surgery and develop programs to follow up with patients at home.

Perceptions of the Impact of Comorbidity on the Bowel Cancer Screening Programme: Qualitative Study With Bowel Screening Participants and Staff.

INTRODUCTION: The impact of multiple health conditions on bowel cancer screening is currently unknown. We explored the impact of multiple health conditions on bowel cancer screening perceptions, experience and clinical management decisions following a positive stool test. METHODS: Semi-structured qualitative interviews were conducted remotely with Bowel Screening Wales staff (n = 16) stratified by regional location and role and with screening participants (n = 19) stratified by age, gender and comorbidity. Interview topics were guided by the Common-Sense Model. RESULTS: Screening participants, regardless of comorbidity status, placed great emphasis on the importance of early detection of cancer and completing the bowel screening process. Screening staff emphasised comorbidities in the clinical decision-making process; however, screening participants had low awareness of the impact that comorbidities can have on bowel screening. Participants describe how the presence of multiple health conditions can mask potential bowel symptoms and influence beliefs about follow-up. CONCLUSION: Bowel screening staff try to individualise the service to meet participant needs. The potential mismatch in screening staff and participant awareness and expectations of the bowel screening and diagnostic process needs to be addressed. Clearer and more regular communication with screening participants could support the screening process, particularly for those with significant coexisting health conditions or facing time delays. The possible masking effects and misattribution of symptoms because of comorbidities highlight an opportunity for education and raising awareness for screening participants and a potential area of focus for discussions in clinical consultations and staff training. PATIENT AND PUBLIC CONTRIBUTION: Project funding included costs for patients and public contributors to be compensated for their contributions to the project, in line with current standards. A patient and public contributor was involved in the design of the study, including protocol development, and the interpretation of key findings and implications for patients, which are subsequently reflected within the manuscript.

Quality of Life After Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy (CRS/HIPEC): Cancer Survivors' Perspective Through In-Depth Interviews.

BACKGROUND: CRS/HIPEC patients face unique quality of life (QoL) challenges due to advanced disease (peritoneal carcinomatosis), the extent of procedure, and risk for long-term complications. Standard QoL questionnaires are generic, focusing on tumor type and standard treatments, and likely do not capture this select population's full experience, suggesting the need for tailored instruments. We aimed to characterize the QoL challenges faced by CRS/HIPEC cancer survivors and determine whether these were captured by a standard QoL questionnaire. PATIENTS AND METHODS: An anonymous, semi-structured individual interview was conducted with CRS/HIPEC patients addressing their experience at diagnosis, challenges related to CRS/HIPEC, and access to CRS/HIPEC information. Verbatim transcripts were interpreted using thematic analysis. Code and theme identification was inductive. Questions addressing common themes that were not encompassed by a standard QoL questionnaire were developed. RESULTS: We interviewed eight patients. Median age was 55 (range 30-71) years and 75% (n = 6) were women. Primary tumor sites included appendix (n = 4), ovarian (n = 3), and peritoneal mesothelioma (n = 1). Median time from CRS/HIPEC was 40.1 (range 3.1-216.3) months. Overall, 133 codes were identified and categorized into 9 themes. The most recurring were physical symptoms after CRS/HIPEC (specifically gastrointestinal symptoms), adjusting to survivorship, mental health, expectations from CRS/HIPEC, and access to care. A total of 22 questions that did not overlap with a standardized QoL questionnaire were developed. CONCLUSIONS: There is an unmet need to understand the unique QoL challenges CRS/HIPEC patients encounter. Patient-centered QoL questionnaires based on CRS/HIPEC patient experiences can capture these unique challenges and help guide future studies and care.

Enhancing LGBT + primary healthcare in Slovenia: A national qualitative study of experiences and expectations of LGBT + people and family doctors.

BACKGROUND: Despite growing acceptance of LGBT + individuals, an underlying stigma persists even in healthcare, resulting in substandard care and worse healthcare outcomes for LGBT + individuals. OBJECTIVES: To examine and compare the experiences and expectations regarding primary healthcare among LGBT + individuals and general practitioners (GPs) in Slovenia. METHODS: We conducted an online national qualitative study using open-ended questions. To reach LGBT + population snowball method of recruitment was employed by sharing the questionnaire through LGBT + organisations, while GPs were invited by email of Association of family doctors in Slovenia. Anonymous data was collected from October to December 2021 and the questionnaires of 25 GPs and 90 LGBT + individuals of various ages, backgrounds, gender identities and sexual orientations were reviewed using thematic analysis. RESULTS: Both LGBT + participants and GPs expressed a desire for equal treatment. However, while all GPs claimed to treat all patients equally, LGBT + participants reported more varied experiences. Specific knowledge, especially on LGBT + terminology and healthcare, was perceived as lacking among GPs, leading LGBT + individuals to seek advice from specialists or community counselling. Systemic barriers, including societal stigmatisation and limited formal education on LGBT + issues, were identified, highlighting the need for designated safe spaces and improved GP training. Safety emerged as a central theme, crucial for fostering trust and disclosure between patients and healthcare providers. CONCLUSION: The study underscores the significance of a sense of safety in the patient-doctor relationship and highlights the need for improved training and attitudes to provide inclusive and affirming healthcare for LGBT + individuals.

Primary care settings must prioritise creating safe and non-judgmental environments for better LGBT + healthcare.Addressing formal GP education on LGBT + terminology, identities, and healthcare needs is crucial to provide inclusive care.Overcoming systemic barriers, such as societal prejudice and homophobia, requires creating visible safe space signals in primary care settings.

The Experiences of Hospital Admission in a Single Room for Older Persons With Dementia and Their Families: A Scoping Review.

INTRODUCTION: When older persons with dementia are admitted to hospital, they often feel disoriented and confused and their cognitive impairment may worsen, purely due to the sudden change in their environment. As such hospital design is recognised as an important aspect in the care and well-being of older persons with dementia. As the number of persons with dementia is increasing, the experience of admission to a hospital with, for example, single rooms is more relevant than ever. AIM AND METHODS: This scoping review aimed to identify, explore and conceptually map the literature reporting on what older people with dementia and their families experienced during admission to a hospital with single room accommodation. We followed the Joanna Briggs Institute recommendations for undertaking a scoping review. In addition, we used the Preferred Reporting Items for Systematic reviews (PRISMA-ScR) Checklist, which assisted the development and reporting of this scoping review. RESULTS: We included 10 sources within a time frame of 23 years (1998-2021). The sources originate from Europe, Australia and Canada. We identified three conceptual maps: Safety and security, Privacy and dignity and Sensorial stimulation. Our review demonstrates that the themes of the three conceptual maps are experienced as mutually interdependent for the older persons with dementia and their families. CONCLUSION: We conclude that it is not merely the single room design that determines what the older persons with dementia and their families experience as important; the exposure to sensorial stimulation and the presence of well-trained staff taking a dignified patient-centred approach are also crucial for their experience of high-quality nursing care.

Multimorbidity and patient experience with general practice: A national cross-sectional survey in Norway.

BACKGROUND: Patient experience is an important indicator of the quality of healthcare. Patients with multimorbidity often face adverse health outcomes and increased healthcare utilisation. General practitioners play a crucial role in managing these patients. The main aim of our study was to perform an in-depth assessment of differences in patient-reported experience with general practice between patients living with chronic conditions and multimorbidity, and those with no chronic conditions. METHODS: We performed secondary analyses of a national survey of patient experience with general practice in 2021 (response rate 41.9%, n = 7,912). We described the characteristics of all survey respondents with no, one, two, and three or more self-reported chronic conditions. We assessed patient experience using four scales from the Norwegian patient experience with GP questionnaire (PEQ-GP). These scales were used as dependent variables in bivariate and multivariate analyses and for testing the measurement model, including confirmatory factor analysis and a multigroup CFA to assess measurement invariance. Sentiment and content analysis of free-text comments was also performed. RESULTS: Patients with chronic conditions consistently reported lower scores on the GP and GP practice experience scales, compared to those without chronic conditions. This pattern persisted even after adjustment for patient background variables. The strongest associations were found for the scale of "Enablement", followed by the scales of "GP" and "Practice". The subscale "Accessibility" did not correlate statistically significantly with any number of chronic conditions. The analysis of free-text comments echoed the quantitative results. Patients with multimorbidity stressed the importance of time spent on consultations, meeting the same GP, follow-up and relationship more often than patients with no chronic conditions. Our study also confirmed measurement invariance across patients with no chronic conditions and patients with multimorbidity, indicating that the observed differences in patient experience were a result of true differences, rather than artifacts of measurement bias. CONCLUSIONS: The findings highlight the need for the healthcare system to provide customised support for patients with chronic conditions and multimorbidity. Addressing the specific needs of patients with multimorbidity is a critical step towards enhancing patient experience and the quality of care in general practice.

Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective.

Introduction: Atypical hemolytic uremic syndrome (aHUS) poses a significant health challenge due to its rarity and severity within the spectrum of thrombotic microangiopathy. Despite efforts to optimize and personalize health care for patients with aHUS, understanding the individual experiences, needs, and desires of patients with aHUS and their relatives remains limited. Methods: Here, we present a nationwide, exploratory, qualitative interview study with a direct content analysis approach. In-depth interviews and a 6-week evaluation were audio-recorded and conducted using a semistructured topic guide, based on the Institute for Positive Health (IPH) model. Results: Analysis of 10 interviews involving 6 patients with aHUS and 13 relatives revealed the prevalence of long-term disease symptoms in adult patients, notably fatigue, which significantly impacted daily functioning. Moreover, the resilience demonstrated by patients and their relatives was noteworthy; however, the acute phase of aHUS and the unpredictable nature of disease recurrence could profoundly affect mental well-being. The emotional toll of aHUS is pervasive, with feelings of fear, guilt, and trauma persisting across disease phases in both patients and relatives. Challenges in medical care, including delays in diagnosis and the need for personalized and uniform protocols, were highlighted. Support was deemed crucial, indicating the necessity for enhancements in the accessibility to comprehensible disease information and psychological counseling. Finally, complexities surrounding genetic testing and carriership were discussed. Conclusion: This study underscores the profound, enduring, and multifaced impact of aHUS. The insights gleaned from the experiences and needs of patients with aHUS and their relatives could lay the foundation for development and implementation of more personalized innovations in aHUS health care.

Coming home in the context of very early supported discharge after stroke - An interview study of patients' experiences.

OBJECTIVES: To explore patients' experiences of coming home and managing everyday life within the context of very early supported discharge after stroke (VESD). STUDY DESIGN: An explorative qualitative study using semi structured interviews. METHOD: This study was nested within a randomised controlled trial,; Gothenburg Very Early Supported Discharge (GOTVED), comparing a home rehabilitation intervention given by a coordinated team (VESD) with conventional care. Eleven participants with a median age 70.0 years (range 63-95) of which nine scoring 0-4 on the NIHSS indicating no symptoms or minor stroke were interviewed on average 12 days after discharge. Data was analysed using thematic analysis. RESULTS: The diversity of patients' experiences was reflected in the overarching main theme Very Early Supported Discharge after stroke - a multifaceted experience, built upon five themes: "Conditions surrounding the discharge", "Concerns about the condition", "Confronting a new everyday life", "Experiences of the intervention" and the "Role of next of kin". CONCLUSIONS: The respondents were largely satisfied with the very early supported discharge which might be expected, given that it was well planned regarding timing, individualisation and content. The patients need to be aware of the purpose of the VESD intervention. Due to the unpredictability of the stroke and its consequences, interventions need to be flexible. Goal setting is important but must be comprehensible. The role and burden of next of kin should be addressed and negotiated, and the ending of the intervention must be planned, with seamless transition to further rehabilitation and social support including the issue of participation in everyday life.

Measuring Team Functioning During the COVID-19 Pandemic: Perspectives of Cancer Care Team Members.

Background: In a public health crisis such as COVID-19, cancer teams face significant challenges including acute work disruptions, rapid shifts in clinical practice, and burnout. Within this context, it is crucial to explore team functioning from the perspectives of multiple stakeholders. Objective: This quantitative pilot study aimed to 1) measure perceptions of multi-stakeholders on key indicators of team functioning (Team Effectiveness, TE, and Team Relational Coordination, TRC) during COVID-19 and its transition, and 2) document whether patient perceptions of TE/TRC are significantly associated with their cancer care experiences. Methods: A descriptive design with repeated measures was used. Through convenience sampling, participants were recruited from two outpatient cancer clinics at a large university-affiliated hospital, in Montréal, Qc, Canada. Sixty-six participants (ie, 13 healthcare professionals, 40 patients, 6 informal caregivers, and 7 volunteers) completed e-measures at T1 (years 2021-2022) and n = 44 at T2 (year 2023). Results: At T1, participants reported high perceptions of Team Effectiveness (scale 1 to 6) M = 4.47; SD = 0.7 (Mdn = 4.54; IQR: 4.06-5) and Relational Coordination (scale 1 to 5) M = 3.77; SD = 0.77 (Mdn = 3.81; IQR: 3.12-4.38) with no significant differences in perceptions across the four groups. At T2, no significant changes in TE/TRC perceptions were found. At both time points, patient perceptions of TE/TRC were significantly correlated with positive cancer care experiences (Spearman rank correlation rs ranging from 0.69 and 0.83; p < 0.01). Conclusion: To our knowledge, this is the first study documenting perceptions of cancer team functioning amidst the pandemic as reported by multiple stakeholders. Significant relationships between patient perceptions of TE/TRC and their cancer care experiences underscore the importance of including patients' views in team functioning processes. Future work should rely on larger sample sizes to further explore key elements of optimal team functioning.

"It Felt Like I Was Being Tailored to the Treatment Rather Than the Treatment Being Tailored to Me": Patient Experiences of Helpful and Unhelpful Psychotherapy.

OBJECTIVE: This qualitative study explores patients' experiences of psychotherapy, focusing on elements perceived as helpful or unhelpful and suggestions for improvement in the context of public mental health care. METHODS: A total of 148 adults (Mean age = 32.24, SD = 9.92) who had been or are currently receiving psychological treatment from the National Health Service (NHS) responded to an online survey. The survey included open-ended questions regarding their experiences of psychotherapy, asking them to identify helpful or unhelpful aspects, and suggestions for improvement. Using thematic analysis, key themes were identified. RESULTS: The analysis highlighted the patient's preference for personalized treatment, the importance of therapeutic alliance, the demand for depth in therapy, and life skills and agency as therapeutic outcomes. Participants suggested improvements such as more tailored approaches and stronger therapist-patient relationships, supporting an adaptable, patient-centered model. CONCLUSION: The study highlights challenges in public mental health services where patients might feel their specific needs are not being recognized and met and underscores the importance of personalized treatment plans that satisfy and evolve with patient needs, suggesting that therapists must be attentive and responsive to individual desires to enhance the patient experience.

Heart failure patients' experiences of telerehabilitation.

In the UK, almost 1 million people are living with heart failure, with heart and circulatory diseases accounting for 27% of all deaths, according to the British Heart Foundation. Current heart failure guidelines support cardiac rehabilitation as an intervention to reduce cardiovascular events, increase exercise tolerance and enhance patients' quality of life. Research indicates that telerehabilitation is an effective component of heart failure management, which helps overcome perceived barriers to cardiac rehabilitation including travel to appointments, long waiting times and accessibility. Understanding patient experiences and increasing telerehabilitation among heart failure patients is pertinent to implementing person-centred care, reducing risk and optimising quality of life.

When "virtual" works and when it doesn't: A survey of physician and patient experiences with virtual care during the COVID-19 pandemic.

Objective: To assess the experience of virtual care among both patients and physicians across a range of clinical scenarios during the COVID-19 pandemic. Methods: A web-based survey was disseminated to patients and physicians through a variety of media and healthcare communications from May 2020 to July 2021. Demographic details and attitudes across a range of virtual care domains were collected. Quantitative responses were analyzed descriptively. Open-text responses were gathered to contrast when a virtual visit was superior or inferior to an in-person one, and a thematic content analysis was used. Results: There were 197 patients and 93 physician respondents, representing a range of demographic and practice characteristics. Patients noted several benefits of virtual care and felt it should continue to be available. Physicians felt they could do a lot of their care virtually. Common themes related to the superiority of virtual care were for "quick" visits, reviewing test results, chronic disease monitoring, and medication needs. Virtual care was less ideal when a physical exam was needed, and was not perceived as a good fit for an individual's cultural, language, or emotional needs. Certain conditions were identified as both ideal and non-ideal for the virtual format (e.g. mental healthcare). Discussion: Certain situations are more amenable to virtual care with personal preferences among both patients and physicians. Future priorities should ensure that virtual care is effective across the range of clinical situations in which it may be used and that both virtual and in-person options are equally available to those who want them.

Key ingredients for successful collaboration in health research: perspectives of patient research partners.

BACKGROUND: There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. MAIN BODY: We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. CONCLUSION: Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.

A Qualitative Phenomenological Philosophy Analysis of Affectivity and Temporality in Experiences of COVID-19 and Remaining Symptoms after COVID-19 in Sweden.

This article explores affectivity, temporality, and their interrelation in patients who contracted COVID-19 during the first wave of the pandemic in Sweden and with symptoms indicative of post-COVID-19 Condition (PCC) that remained one year after the infection. It offers a qualitative phenomenological philosophy analysis, showing how being ill with acute COVID-19 and with symptoms indicative of PCC can entail a radically altered self-world relation. We identify two examples of pre-intentional (existential) feelings: that of listlessness and that of not being able to sense what is real and not real, both of which, in different ways, imply a changed self-world relation. We offer an analysis of intentional feelings: how the fear of not "returning" to one's previous self and the hope of such a return weave together the present and the absent, as well as the past and the future, in ways that make the future appear as constricted, disquieting, or lost. We argue that a phenomenological differentiation among experiences of living with symptoms indicative of PCC-through attention to the way intentional affectivity and pre-intentional affectivity help shape the embodied self's attunement to the world-is apt to yield a better understanding of the variations within these experiences and contribute to clinical practice.

"A second birthday"? Experiences of persons with multiple sclerosis treated with autologous hematopoietic stem cell transplantation-a qualitative interview study.

Introduction and objective: Autologous hematopoietic stem cell transplantation (aHSCT) is a promising treatment option for persons with multiple sclerosis (pwMS). Patients undergoing aHSCT face unique challenges in all aspects of life. In this study, we explored the lived experiences of pwMS undergoing aHSCT. Methods: Semi-structured interviews of 12 pwMS treated with aHSCT were conducted using a maximum variation sampling strategy. Interviews were transcribed verbatim and analyzed thematically using inductive and deductive categories. Results: Three major themes were identified: (1) preparing for aHSCT, (2) experiencing the procedure, and (3) post-treatment time. A difficult decision-making process, organizational effort, and funding difficulties characterized the preparation for transplantation. AHSCT was seen as a life-changing event accompanied by both psychological and physical stress, with an associated feeling of regaining control. The transplantation had a lasting positive effect on the lives of the interviewed pwMS. However, the early post-treatment time was characterized by successes and failures alike. Particularly the independently organized medical aftercare was perceived as challenging. Retrospective revaluation has led most pwMS to wish for earlier information provision about the treatment option of aHSCT during their treatment history. Conclusion: AHSCT had a clear impact on patients' physical and psycho-social health, influencing their perception of life and its quality. Assessing and attending to unmet needs of patients before, during, and after transplantation may positively influence their experience of aHSCT.