Review of the Literature on Ramadan Fasting and Health in 2022

Objectives The literature on health and disease during Ramadan fasting (RF) is widely spread in many journals making it not readily accessible to those interested in the subject. Here, we provide an overview of the research on the interplay of RF with various aspects of well-being published in 2022.Materials and Methods A narrative, nonsystematic review of the international literature from a single major medical online database, PubMed, in one calendar year (2022) was conducted. The search term "Ramadan fasting" was used to retrieve the appropriate records. The relevant literature with substantial data-based content was presented in a concise thematic account, excluding those concerned with diabetes.Results Themes that emerged from the review included the pathophysiology of metabolic changes during RF, nutritional aspects including body composition and energy metabolism, cardiovascular disease and risk factors, renal function and structure, endocrinology (mainly thyroid), neurological disorders, mental health, pregnancy and fetal life, and infections (including COVID). Some miscellaneous clinical themes were identified, such as patients' and professional perspectives.Conclusions In 2022, the medical interest in RF was again widely spread across specialties. Cardiovascular disease and risk factors attract the most interest in terms of original articles and professional guidelines. We hope with this review to present a concise summary of the scholarly work on the subject in this year.

Patients' perspectives on involvement in general practice: A thematic analysis of free-text comments.

BACKGROUND: General practice (GP) plays a core role in managing the clinical pathways of patients with chronic diseases. Despite well-established knowledge of the benefits of involvement and personalized care, involvement in GP appears to be challenged. This study aimed to explore patient involvement in GP from the patients' perspectives. METHOD: The study involved a questionnaire survey investigating patient involvement in GP from the patients' perspectives. The validated questionnaire includes an open-ended question encouraging responders to provide additional comments regarding their involvement in GP. The results from these comments are presented in this paper. A thematic analysis was applied. RESULTS: Of the 468 responses, 139 included additional comments to the free-text question. Through our analysis, six analytic themes were generated-To be seen, met or heard, To feel safe or not, To be involved or dictated to, Accessibility, COVID-19, and For the resourceful-across 116 codings and 25 descriptive themes. The themes' interwovenness underscores the complexity of both involvement and how it is to live with a chronic disease. Our analysis indicates that involvement in GP is for the resourceful. CONCLUSION: The six themes describing involvement in GP from the perspectives of patients with T2DM and/or COPD were deeply intertwined. Involvement is dependent on being seen, met and heard, all of which contribute to the patients' sense of feeling safe (or not). These aspects are dependent on accessibility to a general practitioner; thus, COVID-19 was a barrier during the data-collection period. Furthermore, it appeared that being resourceful not only contributed to a sense of being involved in GP but was perhaps even a prerequisite for being involved.

Benefits and Challenges of Telehealth Use during COVID-19: Perspectives of Patients and Providers in the Rural South

Social workers and other health care researchers have examined benefits and challenges of telehealth in rural communities before the COVID-19 pandemic. Yet, experience with virtual platforms and other technologies have rapidly evolved during the pandemic. The research team interviewed 14 health care providers and 17 patients after the onset of the pandemic in a predominantly rural state to examine perceptions of telehealth. MaxQDA analytic software was used to identify benefits and challenges in the use of telehealth. Findings identified commonly discussed benefits of telehealth including convenience for patients, increasing patient access to care, improved patient experience of care, and ability of telehealth to attract/retain patients. Challenges identified in this study included concerns about quality of care being compromised, patients' comfort and access to technology, policy challenges for providers, and the impersonal nature of telehealth visits. Persistent issues warrant research, education, and policy advocacy to improve access for rural populations. Social workers should play a key role in educating the emerging and existing workforce around barriers such as quality of care and patient comfort with technology, convening professionals and patients to establish sustained and effective reimbursement models, and advocating for structural access via enhanced broadband and other resource allocations. © 2022 Authors.

Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey.

BACKGROUND: Individuals with vitamin B12 deficiency (including pernicious anaemia) often report being 'let down' or stigmatised by general practice systems and policy, and choose instead to self-medicate via injection; the association between this and perceptions of safe primary care in this group of people is unknown. AIM: To examine the association between self-medication for vitamin B12 deficiency and patient-reported safety in primary care. DESIGN AND SETTING: A UK cross-sectional online survey. METHOD: The survey consisted of the three components: demographics; the validated Primary Care Patient Measure of Safety; and questions about self-medication for vitamin B12 deficiency. Multivariable logistic regression analyses and thematic synthesis were undertaken. RESULTS: Responses from 1297 participants indicated 508 (39.2%) self-medicated via injection. Perceived primary care safety was low. Those who self-medicated via injection reported a significantly lower level of patient safety in primary care including adverse patient-related factors (odds ratio 0.82, 95% confidence interval = 0.73 to 0.92), and patients >34 years of age were significantly more likely to self-medicate via injection. Many reported that treatment under the guidance of a clinician was preferable to self-medication, but felt they had no other choice to regain quality of life. Almost half felt that the doctor did not always consider what they wanted for their care. CONCLUSION: To the authors' knowledge, this is the largest study to date examining patient safety and vitamin B12 deficiency. It found that four out of 10 patients with B12 deficiency self-medicate via injection. Patients who self-medicated perceived primary care as less safe. Providing patient-centred care and treating these patients with dignity and respect is a policy priority to reduce unsafe health behaviours.

Patient Experiences with a Tertiary Care Post-COVID-19 Clinic.

Post-acute sequelae of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (PASC) is a complex condition with multisystem involvement. We assessed patients' experience with a PASC clinic established at University of Iowa in June 2020. A survey was electronically mailed in June 2021 asking about (1) symptoms and their impact on functional domains using the Patient-Reported Outcomes Measurement Information System (PROMIS) measures (Global Health and Cognitive Function Abilities) (2) satisfaction with clinic services, referrals, barriers to care, and recommended support resources. Survey completion rate was 35% (97/277). Majority were women (67%), Caucasian (93%), and were not hospitalized (76%) during acute COVID-19. As many as 50% reported wait time between 1 and 3 months, 40% traveled >1 h for an appointment and referred to various subspecialities. Participants reported high symptom burden-fatigue (77%), "brain fog" (73%), exercise intolerance (73%), anxiety (63%), sleep difficulties (56%) and depression (44%). On PROMIS measures, some patients scored significantly low (≥1.5 SD below mean) in physical (22.7%), mental (15.9%), and cognitive (17.6%) domains. Approximately 61% to 93% of participants were satisfied with clinical services. Qualitative analysis added insight to their experience with healthcare. Participants suggested potential strategies for optimizing recovery, including continuity of care, a co-located multispecialty clinic, and receiving timely information from emerging research. Participants appreciated that physicians validated their symptoms and provided continuity of care and access to specialists.

Hospitalisation at Home of Patients with COVID-19: A Qualitative Study of User Experiences.

Hospitalisation at Home (HaH) is a new model providing hospital-level care at home as a substitute for traditional care. Biometric monitoring and digital communication are crucial, but little is known about user perspectives. We aim to explore how in-patients with severe COVID-19 infection and clinicians engage with and experience communication and self-monitoring activities following the HaH model. A qualitative study based on semi-structured interviews of patients and clinicians participating in the early development phase of HaH were conducted. We interviewed eight clinicians and six patients. Five themes emerged from clinicians: (1) staff fear and concerns, (2) workflow, (3) virtual closeness, (4) patient relatives, and (5) future HaH models; four themes emerged from patients: (1) transition to home, (2) joint responsibility, (3) acceptability of technologies, and (4) relatives. Despite technical problems, both patients and clinicians were enthusiastic about the conceptual HaH idea. If appropriately introduced, treatment based on self-monitoring and remote communication was perceived acceptable for the patients; however, obtaining vitals at night was an overwhelming challenge. HaH is generally acceptable, perceived patient-centred, influencing routine clinical workflow, role and job satisfaction. Therefore, it calls for educational programs including more perspective than issues related to technical devices.

Patient views on asthma diagnosis and how a clinical decision support system could help: A qualitative study.

INTRODUCTION: Making a diagnosis of asthma can be challenging for clinicians and patients. A clinical decision support system (CDSS) for use in primary care including a patient-facing mode, could change how information is shared between patients and healthcare professionals and improve the diagnostic process. METHODS: Participants diagnosed with asthma within the last 5 years were recruited from general practices across four UK regions. In-depth interviews were used to explore patient experiences relating to their asthma diagnosis and to understand how a CDSS could be used to improve the diagnostic process for patients. Interviews were audio recorded, transcribed verbatim and analysed using a thematic approach. RESULTS: Seventeen participants (12 female) undertook interviews, including 14 individuals and 3 parents of children with asthma. Being diagnosed with asthma was generally considered an uncertain process. Participants felt a lack of consultation time and poor communication affected their understanding of asthma and what to expect. Had the nature of asthma and the steps required to make a diagnosis been explained more clearly, patients felt their understanding and engagement in asthma self-management could have been improved. Participants considered that a CDSS could provide resources to support the diagnostic process, prompt dialogue, aid understanding and support shared decision-making. CONCLUSION: Undergoing an asthma diagnosis was uncertain for patients if their ideas and concerns were not addressed by clinicians and were influenced by a lack of consultation time and limitations in communication. An asthma diagnosis CDSS could provide structure and an interface to prompt dialogue, provide visuals about asthma to aid understanding and encourage patient involvement. PATIENT AND PUBLIC CONTRIBUTION: Prespecified semistructured interview topic guides (young person and adult versions) were developed by the research team and piloted with members of the Asthma UK Centre for Applied Research Patient and Public Involvement (PPI) group. Findings were regularly discussed within the research group and with PPI colleagues to aid the interpretation of data.

Evaluating perspective and quality of life of glaucoma patients during the COVID-19 pandemic in India: Results of a telephone survey.

Purpose: The past few years have been difficult in the lives of most glaucoma patients in view of the COVID-19 pandemic. Our aim was to find out patients' perspective and disruption of their quality of life during the COVID-19 pandemic by conducting a telephone survey among glaucoma patients. Methods: This was a cross-sectional study involving the glaucoma patients of a tertiary eye care hospital in India. Patients who had completed at least five years of follow-up before 2020 were randomized by a random number generator. A validated (forward-backward translation and completed pilot analysis) set of 14 questionnaires was administered to the patients, the latter of whom were telephonically interviewed by one of the investigators in February 2022. The entire data was audio-recorded. Statistical Package for the Social Sciences (SPSS) version 26 was used. Results: Out of 1141 patients with >5 years of follow-up, 103 were selected by randomization. A large group of 46 patients (44.6%) admitted to glaucoma affecting their daily activities. Only 12 (11.6%) admitted to being irregular with their drops. Thirty-four (33%) patients felt that their glaucoma was deteriorating and 31 (30.1%) had fear of blindness. Ninety-five patients (92.7%) felt that they were safe under the care of the treating doctor. There were 46 (44.6%) out of 103 patients who did not turn up for follow-up for six months or more. Lockdown (36.2%) and travel-expenses (27.6%) were the two most common reasons for the loss to follow-up visits. Conclusion: Nearly half of the long-term glaucoma patients were lost to follow-up during the COVID-19 pandemic. Glaucoma affecting daily lives and fear of losing vision turned out to be significant observations in the telephone survey. This fear seemed to be ameliorated by the majority still feeling safe by being in touch with their doctor for continued care even during the COVID-19 pandemic.

"The Stakes Are Higher"- Patient and Caregiver Perspectives on Cystic Fibrosis Research and Personalized Medicine.

Introduction: Making bench to bedside advances in cystic fibrosis (CF) care requires the sustained engagement and trust of people living with CF. However, there is a scarcity of studies exploring their concerns and priorities regarding research and its end products. The aim of this qualitative study was to generate empirical evidence regarding patient and caregiver perspectives on cystic fibrosis research and personalized medicine to foster developments in translational research in Canada. Methods: A total of 15 focus groups were conducted, engaging 22 adults with CF and 18 caregivers (e.g., parents, siblings and partners) living in Canada. Inductive thematic analysis relied on an iterative process involving themes derived from both participant meaning-making and existing scientific literature. Participant perspectives were considered along intrapersonal, intracommunity, interpersonal, and structural lines. Results: Overall, participants described a relationship to CF research inextricable from the lived experience of CF as a lifelong progressive and terminal disease and from the goal of advancing medical science. They were enthusiastic and excited about the emergence of CFTR modulators, although they had some knowledge gaps regarding the associated research. They largely spoke to positive experiences with researcher communication but had feedback regarding informed consent processes and the return of study results. Participants also voiced concerns about structural access barriers to research and to its end products. Extensive histories of research participation, a relatively small and intercommunicative CF community, and structural overlap between research and care settings contributed to their perspectives and priorities. Conclusion: Study findings are valuable for researchers and policy-makers in CF and rare or progressive diseases more broadly. Continuing to solicit and listen to the voices of patients and caregivers is crucial for research ethics and the translation of new therapies in the area of personalized medicine.

Biologic use in hidradenitis suppurativa: patient perspectives and barriers.

INTRODUCTION: Hidradenitis suppurativa (HS) is an inflammatory dermatosis for which the treatment paradigm is rapidly expanding. We aimed to identify HS patient perspectives and barriers on biologics. METHODS: An anonymous survey was distributed between 10/2021 and 1/2022 through HS support groups. Data regarding demographics and perspectives on biologics were collected and analyzed. RESULTS: Of the 196 respondents, 92% were female (180/196) and 75% were white (147/196). 89.3% had Hurley stage 2/3 HS (102/195). The primary healthcare provider (HCP) for HS in 65% (128/196) of patients was a dermatologist, with 12% (23/196) seen at an HS specialty clinic. Most respondents never tried a biologic medicine (62%, 118/192). The top barriers to biologics were fear of side effects (61%, 109/179), high cost/lack of insurance coverage (46%, 83/179), frequency of weekly injections (32%, 58/179). Respondents reporting their main HCP as a non-dermatologist (4.11 vs 3.0, p < .0001) and not seen at a HS specialty clinic (3.5 vs 2.7, 0.039) were significantly more likely to agree 'I do not know enough about how biologics work to help my HS'. CONCLUSION: Our results highlight the importance of specialty care in the education and implementation of biologics. Patients may benefit from comprehensive discussion prior to starting biologics.

Facilitators and barriers to reducing chemotherapy for early-stage breast cancer: a qualitative analysis of interviews with patients and patient advocates.

BACKGROUND: As the combination of systemic and targeted chemotherapies is associated with severe adverse side effects and long-term health complications, there is interest in reducing treatment intensity for patients with early-stage breast cancer (EBC). Clinical trials are needed to determine the feasibility of reducing treatment intensity while maintaining 3-year recurrence-free survival of greater than 92%. To recruit participants for these trials, it is important to understand patient perspectives on reducing chemotherapy. METHODS: We collected qualitative interview data from twenty-four patients with Stage II-III breast cancer and sixteen patient advocates. Interviews explored potential barriers and facilitators to participation in trials testing reduced amounts of chemotherapy. As the COVID-19 pandemic struck during data collection, seventeen participants were asked about the potential impact of COVID-19 on their interest in these trials. Interviews were audio-recorded and transcribed, and researchers used qualitative content analysis to code for dominant themes. RESULTS: Seventeen participants (42.5%) expressed interest in participating in a trial of reduced chemotherapy. Barriers to reducing chemotherapy included (1) fear of recurrence and inefficacy, (2) preference for aggressive treatment, (3) disinterest in clinical trials, (4) lack of information about expected outcomes, (5) fear of regret, and (6) having young children. Facilitators included (1) avoiding physical toxicity, (2) understanding the scientific rationale of reducing chemotherapy, (3) confidence in providers, (4) consistent monitoring and the option to increase dosage, (5) fewer financial and logistical challenges, and (6) contributing to scientific knowledge. Of those asked, nearly all participants said they would be more motivated to reduce treatment intensity in the context of COVID-19, primarily to avoid exposure to the virus while receiving treatment. CONCLUSIONS: Among individuals with EBC, there is significant interest in alleviating treatment-related toxicity by reducing chemotherapeutic intensity. Patients will be more apt to participate in trials testing reduced amounts of chemotherapy if these are framed in terms of customizing treatment to the individual patient and added benefit-reduced toxicities, higher quality of life during treatment and lower risk of long-term complications-rather than in terms of taking treatments away or doing less than the standard of care. Doctor-patient rapport and provider support will be crucial in this process.

Characterizing the Patient Journey in Multiple Myeloma: Qualitative Review.

BACKGROUND: The patient experience of multiple myeloma (MM) is multifaceted and varies substantially between individuals. Current published information on the patient perspective and treatment of MM is limited, making it difficult to gain insights into patient needs regarding the condition. OBJECTIVE: In this review, a combined research method approach (ie, the review of published literature and social media posts) was undertaken to provide insight into patients' perspectives on the burden and treatment of MM, the impact of the COVID-19 pandemic, and the impact of MM on caregivers of patients with MM. METHODS: Targeted searches of PubMed and PsycINFO were conducted from November 16, 2010, to November 16, 2020; in parallel, patient-reported information derived from social media posts from 6 patient advocacy websites and YouTube were searched. The review of patient advocacy websites and YouTube targeted patient-reported information from patients with a self-reported diagnosis of MM who discussed their experience of MM and its treatments. RESULTS: A total of 27 articles and 138 posts were included (patient-reported information included data from 76 individuals), and results from both sources showed that patients experienced a variety of symptoms and treatment side effects, including neuropathy, fatigue, nausea, and back pain. These can affect areas of health-related quality of life (HRQOL), including physical functioning; emotional, psychological, and social well-being; the ability to work; and relationships. Patients valued involvement in treatment decision-making, and both the patient-reported information and the literature indicated that efficacy and tolerability strongly influence treatment decision-making. For patients, caregivers, and physicians, the preference for treatments was strongest when associated with increased survival. Caregivers can struggle to balance care responsibilities and jobs, and their HRQOL is affected in several areas, including emotional-, role-, social-, and work-related aspects of life. The COVID-19 pandemic has challenged patients' ability to manage MM because of limited hospital access and restrictions that negatively affected their lives, psychological well-being, and HRQOL. Unmet patient needs identified in the literature and patient-reported information were for more productive appointments with health care professionals, better-tolerated therapies, and more support for themselves and their caregivers. CONCLUSIONS: The combination of published literature and patient-reported information provides valuable and rich details on patient experiences and perceptions of MM and its treatment. The data highlighted that patients' HRQOL is impeded not only by the disease but also by treatment-related side effects. Patients in the literature and patient-reported information showed a strong preference for treatments that prolong life, and patients appeared to value participation in treatment decisions. However, there remain unmet needs and areas for further research, including treatment, caregiver burden, and how to conduct appointments with health care professionals. This may help improve the understanding of the journey of patients with MM. PLAIN LANGUAGE SUMMARY: Multiple Myeloma (MM) is the second most common cancer that affects blood cells. In this study, researchers wanted to know patients' views on the effects of MM and the treatments they received. Researchers also looked at the impact of the COVID-19 pandemic on patients' treatment and the impact of MM on caregivers. To this end, the researchers reviewed information from 27 published studies and 138 social media posts by 76 patients with MM. Patients commonly reported nerve pain, tiredness, feeling sick, and back pain caused by MM and the treatments they received. The effects of MM and treatments affected patients' physical function; emotional, psychological, and social well-being; ability to work; and relationships. The researchers found that patients wanted to be involved in decisions related to their treatment. The effectiveness against MM and known negative effects strongly influenced the choice of treatments for patients. Increased survival was the strongest factor in the choice of treatment for patients, caregivers, and doctors. Researchers found that the emotional-, role-, social-, and work-related aspects of caregivers' lives were affected by caring for patients with MM. The COVID-19 pandemic also affected the ability of patients to manage their MM because of limited hospital access and the effects of restrictions that impacted their lives and psychological well-being. Finally, the researchers identified some areas requiring improvement, including unproductive appointments with health care professionals, the need for treatments with fewer negative effects, and more support for patients with MM and their caregivers. This information may be useful to improve and understand the experience of patients with MM.

Experiences of patients with cancer and their relatives confronted with COVID-19 related delay or change in care: A qualitative study.

AIMS: To provide in-depth insight into how patients and their relatives experienced change or delay in cancer treatment and care due to COVID-19. DESIGN: A qualitative study including semi-structured interviews with patients with cancer and their relatives. METHODS: Between July and October 2020, 42 patients who were confronted with a change or delay in cancer treatment or care, and 11 relatives were interviewed. Data collection and analysis were performed according to the most important methods of grounded theory, including iterative data collection and analysis, theoretical sampling, constant comparative analysis and theoretical sensitivity. RESULTS: This study shows that patients with cancer and relatives experienced paradoxical feelings when confronted with change or delay in treatment or care due to COVID-19. Patients and relatives felt relieved (e.g. less risk of infection), but were also concerned and anxious (e.g. fear for progression, fear for more side effects). Due to these ambivalent feelings, it was difficult for patients and relatives to cope with the change or delay in treatment or care, both when this was decided by the physician and by themselves. In combination with the general impact of COVID-19 on their daily lives, the change or delay led to additional distress. The interviews showed that exploring the meaning of change or delay of care for patients and their relatives and discussing what would help them might prevent or relieve distress. CONCLUSION: The findings of our study show that COVID-19 and the associated delay or changes in cancer treatment and care had a major impact on the well-being of patients and their relatives. Person-oriented care is even more important during (emergency) situations in which care might be changed or delayed.

Impact of the COVID-19 Pandemic on Patient Fertility Care.

The effects of the COVID-19 pandemic on the healthcare system have been widespread, with many institutions in the United States pausing elective procedures to redirect resources to critical care. Fertility care and assisted reproductive procedures were classified as elective procedures and similarly paused. We conducted qualitative interviews with patients and/or their partners (n = 25 female patients; n = 3 male partners) receiving care at a fertility clinic in the Midwest to understand patient appraisal of COVID-19 risk on the resumption of care following a month-long closure of an infertility clinic, and patient agreement with the clinic closure. Interview transcripts were thematically analyzed from a grounded theory approach. Study participants reported an increased sense of urgency due to the delay in fertility procedures. This urgency often superseded concerns of potential COVID-19 infection, motivating patients to continue fertility treatment during a pandemic. In hindsight, some participants did not agree with the clinic's closure and treatment cessation, feeling that these steps negatively interrupted time-sensitive reproductive goals. Patient responses highlight the need for additional resources to support decision-making during times of crisis. Triaging patients based on time-sensitivity of treatment instead of a total shutdown respects patient autonomy for continuing treatment amidst uncertain COVID-19-impact.

Patient perspectives on nipple-areola complex micropigmentation during the COVID-19 pandemic.

BACKGROUND: Micropigmentation is a well-recognised option for nipple-areola complex reconstruction, as part of the breast reconstruction pathway for patients following mastectomy. As a part of delayed breast reconstruction, this treatment was put on hold during the COVID-19 pandemic. AIMS: To assess the views of patients regarding micropigmentation in response to the COVID-19 pandemic, and whether their attitudes to seeking out this part of the reconstructive journey had been altered. METHODS: A questionnaire undertaken with 53 patients between August & September 2020 attending the Micropigmentation clinic. FINDINGS: 81.1% of patients reported COVID-19 had not impacted their decision, with a similar proportion happy to proceed with the treatment at the time of questioning. CONCLUSIONS: The results highlight the importance of nipple-areola complex to our patients' reconstructive journey.

Framing the COVID-19 Pandemic for Minority Older Adults Through a Family Lens: Results of a Qualitative Thematic Analysis of Survey Responses.

This study assessed COVID-19 experiences among minority older adults in Houston, Texas. An electronic survey was administered to community-dwelling older adults, and the open-ended responses of 458 minority adults were analyzed using thematic analysis. Through an inductive coding approach, 2 unexpected main themes emerged regarding family: fear of COVID-19 spreading among their family and modifications to family and community interactions. These older minority adults framed their personal COVID-19 experiences through the lens of family and their community, demonstrating the importance of integrating family considerations into pandemic planning, response, and recovery efforts for minority older adults.

Needs, concerns and self-management experiences of people with type 2 diabetes during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Type 2 diabetes is associated with increased COVID-19 severity. Little is understood about the needs, concerns and self-management experiences of people with type 2 diabetes during the COVID-19 pandemic. AIM: To examine the lived experiences of people with type 2 diabetes during the COVID-19 pandemic. METHOD: This qualitative study recruited people with type 2 diabetes from the SOUth-London Diabetes (SOUL-D) cohort. Semi-structured interviews via telephone were conducted between September 2020 and January 2021. Deductive thematic analysis derived themes from the data to explore needs, concerns and self-management experiences of people with type 2 diabetes. RESULTS: Twenty-nine people with type 2 diabetes were interviewed. Three themes with subthemes were outlined: (1) information needs of people with type 2 diabetes during the Covid-19 pandemic, (2) concerns about Covid-19 from people with type 2 diabetes and (3) diabetes self management and well-being during the Covid-19 pandemic. CONCLUSION: During a pandemic, there is a need for consistent, diabetes-specific, messaging from healthcare professionals for people with type 2 diabetes. People with type 2 diabetes need support to access digital resources to aid remote communication. Future research could help develop recourses to prevent social isolation and loneliness for people with type 2 diabetes during a pandemic.

Patient perspectives on window of opportunity clinical trials in early-stage breast cancer.

PURPOSE: Window of opportunity trials (WOT) are increasingly common in oncology research. In WOT participants receive a drug between diagnosis and anti-cancer treatment, usually for the purpose of investigating that drugs effect on cancer biology. This qualitative study aimed to understand patient perspectives on WOT. METHODS: We recruited adults diagnosed with early-stage breast cancer awaiting definitive therapy at a single-academic medical center to participate in semi-structured interviews. Thematic and content analyses were performed to identify attitudes and factors that would influence decisions about WOT participation. RESULTS: We interviewed 25 women diagnosed with early-stage breast cancer. The most common positive attitudes toward trial participation were a desire to contribute to research and a hope for personal benefit, while the most common concerns were the potential for side effects and how they might impact fitness for planned treatment. Participants indicated family would be an important normative factor in decision-making and, during the COVID-19 pandemic, deemed the absence of family members during clinic visits a barrier to enrollment. Factors that could hinder participation included delay in standard treatment and the requirement for additional visits or procedures. Ultimately, most interviewees stated they would participate in a WOT if offered (N = 17/25). CONCLUSION: In this qualitative study, interviewees weighed altruism and hypothetical personal benefit against the possibility of side effect from a WOT. In-person family presence during trial discussion, challenging during COVID-19, was important for many. Our results may inform trial design and communication approaches in future window of opportunity efforts.

Patient perspectives and experiences of remote consultations in people receiving kidney care: A scoping review.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic resulted in a rapid and sometimes chaotic change in how clinical care was delivered for people living with kidney disease, with increased reliance on digital technologies and the introduction of remote services. OBJECTIVES: To conduct a scoping review of studies about patients' experiences and perspectives in receipt of remote consultations for kidney care. DESIGN: Using Arksey and O'Malley's framework, three databases were searched on EBSCO (CINAHL, MEDLINE and Psych INFO). The search included studies published in English from August 2010 to August 2021. RESULTS: Eight studies met the scoping review criteria (two cross-sectional, two mixed-method and four qualitative). Five themes were identified: overall satisfaction with remote services, benefits to patients (convenience, involvement in care and patient safety), barriers to remote consultations (technical difficulties, digital literacy and loss of interpersonal communication), patient concerns (need for physical examination, privacy and confidentiality) and prerequisites for successful remote care (existing patient-practitioner relationship, stable illness phase and access to technology). CONCLUSION: Remote consultations confer multiple advantages to patients; therefore, remote consultations should be offered as an option to patients living with kidney disease beyond the COVID-19 pandemic. However, there are several barriers to remote consultation that need to be addressed and understood before implementing remote care long-term. Future research should examine the impact of remote consultations on people living with kidney disease from under-served groups to identify barriers and ensure their suitability and accessibility to the wider population for a more patient-centred approach to kidney care.

Patients' perspectives of telemedicine appointments for psoriatic arthritis during the COVID-19 pandemic: results of a patient-driven pilot survey.

BACKGROUND: Over recent years the lack of patient involvement in the design, set-up and implementation of clinical research studies has been well recognised; as such there has been a drive within research communities to increase patient participation. Patient perspectives on telemedicine differ widely, with variation in whether patients feel remote consultations are beneficial. By means of a patient-driven survey, we aimed to formally evaluate patient perspectives on its benefits and pitfalls, focusing on patients with psoriatic arthritis (PsA). METHODS: An e-survey was developed by two patient representatives on the BritPACT steering committee, with a view to determining unmet needs and the perceived impact on clinical care of virtual consultations amongst patients with PsA. RESULTS: 128 patients responded to the e-survey. 109 patients rated the effectiveness of their telemedicine appointment and, of these, 18% felt their virtual consultation was very/extremely effective compared to an in-clinic consultation and 49% felt it was somewhat/equally as effective; furthermore, 48% (51/107) felt that such virtual consultations would be of benefit to them after the pandemic. 36% of respondents felt their virtual consultation was not as effective as an in-clinic review. Themes identified from open-ended questions included the lack of visual cues, lack of physical examination and effect on rapport and ease of open communication as the main pitfalls of virtual consultations. Patients with well-controlled symptoms appeared more satisfied with remote reviews compared to those with active disease, though on the whole respondents recognised the benefits, such as saving travel time and costs. Those who had an established relationship with their health professional appeared less concerned regarding virtual consultations though a recurring view was that newly diagnosed patients should have in-clinic appointments to build rapport and improve symptom control at an early stage. CONCLUSIONS: Overall patients' perspectives on virtual consultations varied widely though patients with well-controlled symptoms and those who had a previously established relationship with their healthcare professionals and well-controlled disease appeared more satisfied with remote reviews.