Parent Experiences in the NICU and Transition to Home.

Families (n = 12) with infants born at <29 weeks gestation shared their experiences while in the NICU and transitioning home. Parents were interviewed 6-8 weeks after NICU discharge, including some during the acute phase of the COVID-19 pandemic. Findings regarding the parent experience in the NICU were focused around challenges navigating parent-infant separation, social isolation, communication difficulties, limited knowledge of preterm infants, mental health challenges. Parents also discussed supports that were present and supports they wished were present, as well as the impact of COVID-19 on their experiences. In the transition to home, primary experiences included the sudden nature of the transition, anxiety around discharge preparation, and the loss of the support from nursing staff. During the first few weeks at home, parents expressed joy and anxiety, particularly around feeding. The COVID-19 pandemic limited emotional, informational, and physical support to parents and resulted in limited mutual support from other parents of infants in the NICU. Parents of preterm infants in the NICU present with multiple stressors, rendering attending to parental mental health crucial. NICU staff need to address logistical barriers and familial priorities impacting communication and parent-infant bonding. Providing multiple opportunities for communication, participating in caretaking activities, and meeting other families can be important sources of support and knowledge for parents of very preterm infants.

Dialysis Patient Experiences During the COVID-19 Pandemic: A Survey Study.

Rationale & Objective: The coronavirus disease 2019 (COVID-19) pandemic imposed several changes in the care of patients with kidney failure receiving dialysis. We explored patient care experiences during the pandemic. Study Design: The study team verbally administered surveys including Likert scale multiple-choice questions and open-ended questions and recorded responses. Setting & Participants: Surveys were administered to adults receiving dialysis through an academic nephrology practice after the first wave of the COVID-19 pandemic. Exposure: Outpatient dialysis treatment during the COVID-19 pandemic. Outcomes: Perceptions of care and changes in health. Analytical Approach: Multiple-choice responses were quantified using descriptive statistics. Thematic analysis was used to code open-ended responses and derive themes surrounding patient experiences. Results: A total of 172 patients receiving dialysis were surveyed. Most patients reported feeling "very connected" to the care teams. Seventeen percent of participants reported transportation issues, 6% reported difficulty obtaining medications, and 9% reported difficulty getting groceries. Four themes emerged as influencing patient experiences during the pandemic: 1) the COVID-19 pandemic did not significantly affect participants' experience of dialysis care; 2) the COVID-19 pandemic significantly impacted other aspects of participants' lives, which in turn were felt to affect mental and physical health; 3) regarding dialysis care experience more generally, participants valued consistency, dependability, and personal connection to staff; and 4) the COVID-19 pandemic highlighted the importance of external social support. Limitations: Surveys were administered early in the COVID-19 pandemic, and patient perspectives have not been reassessed. Further qualitative analysis using semi-structured interviews was not performed. Survey distribution in additional practice settings, using validated questionnaires, would increase generalizability of the study. The study was not powered for statistical analysis. Conclusions: Early in the COVID-19 pandemic, perceptions of dialysis care were unchanged for most patients. Other aspects of participants' lives were impacted, which affected their health. Subpopulations of patients receiving dialysis may be more vulnerable during the pandemic: those with histories of mental health conditions, non-White patients, and patients treated by in-center hemodialysis. Plain-language summary: Patients with kidney failure continue to receive life-sustaining dialysis treatments during the coronavirus disease 2019 (COVID-19) pandemic. We sought to understand perceived changes in care and mental health during this challenging time. We administered surveys to patients receiving dialysis after the initial wave of COVID-19, asking questions on topics including access to care, ability to reach care teams, and depression. Most participants did not feel that their dialysis care experiences had changed, but some reported difficulties in other aspects of living such as nutrition and social interactions. Participants highlighted the importance of consistent dialysis care teams and the availability of external support. We found that patients who are treated with in-center hemodialysis, are non-White, or have mental health conditions may have been more vulnerable during the pandemic.

Patient and caregiver experience with telepharmacy in cancer care to support beginning systemic therapy: A qualitative study.

INTRODUCTION: Although the COVID-19 pandemic spurred telehealth adoption for many specialties and care team roles, the patient and caregiver experience for telepharmacy visits has been relatively understudied. To our knowledge, there is a paucity of studies that have attempted to qualitatively evaluate this. This study aimed to qualitatively assess the patient and caregiver experience of telepharmacy visits in a cancer center. METHODS: Semistructured interviews were conducted with 21 patients with cancer and seven caregivers that had attended a telepharmacy visit between December 1, 2021, and May 24, 2022. The interviews assessed visit content, overall satisfaction, system experience, visit quality, and future preferences for pharmacy visits as telehealth versus in-person. We used both deductive and inductive coding to identify themes. RESULTS: Telepharmacy delivery was generally well-received. Reasons for having the telepharmacy visit included reviewing chemotherapy procedures, side effects to expect during treatment, providing education on recently prescribed medications, offering dietary recommendations (e.g., avoiding grapefruit juice), and performing medication reconciliation. Participants were receptive to having pharmacy visits through telehealth due to the perceived lack of a need to have a physical exam and prior relationship with the pharmacist. Participants also highlighted the main reason for the telepharmacy visits was primarily to provide patient education, which participants felt was suitable for telehealth. CONCLUSIONS: The patient and caregiver experience of telepharmacy is influenced by several factors, such as ease of connectivity, communicating effectively with the pharmacist, and timing of the telepharmacy visit (e.g., immediately after picking up medications from the pharmacy). Participants' recommendations to improve telepharmacy delivery included health systems raising awareness of telepharmacy services and providing a list of questions to patients to guide discussions.

Patient and carer perspectives on the use of video consultations in the management of the ketogenic diet for epilepsy.

BACKGROUND: The COVID-19 pandemic resulted in a significant change in the way healthcare was delivered worldwide. During this time, a survey of Ketogenic Dietitians Research Network (KDRN) members found that all respondents expected digital platforms for clinics and/or education to continue post-pandemic. As a follow-up to this, we surveyed views about video consultations (VCs) of patients and carers of those following the ketogenic diet for drug-resistant epilepsy. METHODS: The SurveymonkeyTM survey was distributed on Matthews' Friends and KDRN social media platforms and emailed from five United Kingdom ketogenic diet centers to their patients/carers. RESULTS: Forty eligible responses were received. More than half of the respondents (23, 57.5%) had attended a VC. Eighteen respondents (45%) would like to have VCs for most (categorized as approximately 75%) or all of their consultations. Half as many (9, 22.5%) would not like video consultations. The most common benefits selected were saving travel time (32, 80%), less stress of finding somewhere to park and not having to take time off work (22, 55% each). Twelve (30%) responded that VCs lessened environmental impact. The most common disadvantages selected were not being able to get blood tests/having to make a separate consultation for blood tests (22, 55% overall), not being able to get weight or height checked/having to make a separate consultation for this and it is less personal/preferring face-to-face (17, 42.5% each). Three-quarters (30 respondents) felt it would be very easy or easy to accurately weigh the patient when not attending an in-person consultation. CONCLUSION: Our results suggest that many patients and carers would welcome the option of VCs as well as face-to-face consultations. Where possible and appropriate patients and their families should be offered both options. This is in line with the NHS Long-Term Plan and the NHS response to climate change.

Remote Consultations for Mental Health: Patient Experiences.

OBJECTIVE: An exponential implementation of remote mental health care has been observed, but little data is available on experiences and barriers of remote health from a patient's perspective. This study investigated experiences associated with several forms of remote consultations (both telephone and online video) for mental health care during the COVID-19 coronavirus pandemic with a particular focus on patients' experiences. METHODS: This study includes results of an online web-based survey filled in by 512 patients on the use and experiences of remote mental health consultations and circulating between March and October 2021. RESULTS: Psychiatric consultations were initiated by the health care provider in 47.0% of cases, while psychological consultations were most often initiated in shared decision with the patient (54.9%). Only 28.8% of participants mentioned advantages regarding teleconsultations over face-to-face, compared to 39.3% for online video consultations. Moreover, 49.3% saw clear disadvantages for teleconsultations and 32.7% for video consultations. Positive factors associated with remote mental health care included when faced with transportation problems, followed by consultations primarily focusing on medication (for telephone consultations) or on more practical aspects (for video consultations). 25.0% of patients deemed conversations when being angry or sad to be feasible by telephone, and 33.0% considered these feasibly using video consultations. CONCLUSION: Remote consultations were deemed feasible, but the positive factors did not seem to outweigh the face-to-face contacts from a patient's perspective. Remote consultations will probably remain present in the following decades, although care must be taken when providing the possibility of remote mental health care.

Development of a carpark cardiac implantable electronic device clinic to improve time efficiency and patient satisfaction in the context of restrictions imposed by the COVID-19 pandemic.

INTRODUCTION: We evaluated time efficiency and patient satisfaction of a "car park clinic" (CPC) compared to traditional face-to-face (F2F) during the COVID-19 pandemic. METHODS: Consecutive patients attending CPC between September 2020 and November 2021 were surveyed. CPC time was recorded by staff. F2F time was reported by patients and administrative data. RESULTS: A total of 591 patients attended the CPC. A total of 176 responses were collected for F2F clinic. Regarding satisfaction, 90% of CPC patients responded "happy" or "very happy." 96% reported feeling "safe" or "very safe." Patients spent significantly less time in CPC compared to F2F (17 ± 8 vs. 50 ± 24 min, p < .001). CONCLUSION: CPC had excellent patient satisfaction and superior time efficiency compared to F2F.

Patient experiences of virtual care across specialist neuroscience and psychiatry clinics related to the second wave of the COVID-19 pandemic in Calgary, Alberta.

Purpose: The emergence of the COVID-19 (SARS-CoV-2) pandemic has led to public health restrictions and a shift towards virtual care and telehealth. The aim of this study was to explore barriers and facilitators of virtual care from the perspective of neurological and psychiatric patients. Methods: One-on-one interviews were conducted remotely using telephone and online video teleconferencing. There was a total of 57 participants, and a thematic content analysis was conducted using NVivo software. Results: The two main themes were (1) virtual health service delivery and (2) virtual physician/patient interaction, with subthemes around how virtual care improved accessibility of care for patients and improved patient-centered care; how privacy and technical issues impact patients using virtual care; and the need for relationality and connection between health care providers and patients while using virtual care. Conclusions: This study showed that virtual care can increase accessibility and efficiency for patients and providers, indicating its potential for ongoing use in the delivery of clinical care. Virtual care was found to be an acceptable mode of healthcare delivery from the perspective of patients; however, there is a continued need for relationship-building between care providers and patients.

Understanding the Experience of Long COVID Symptoms in Hospitalized and Non-Hospitalized Individuals: A Random, Cross-Sectional Survey Study.

The relationship between initial COVID-19 infection and the development of long COVID remains unclear. The purpose of this study was to compare the experience of long COVID in previously hospitalized and non-hospitalized adults in a community-based, cross-sectional telephone survey. Participants included persons with positive COVID-19 test results between 21 March 2021 and 21 October 2021 in Alberta, Canada. The survey included 330 respondents (29.1% response rate), which included 165 previously hospitalized and 165 non-hospitalized individuals. Significantly more previously hospitalized respondents self-reported long COVID symptoms (81 (49.1%)) compared to non-hospitalized respondents (42 (25.5%), p < 0.0001). Most respondents in both groups experienced these symptoms for more than 6 months (hospitalized: 66 (81.5%); non-hospitalized: 25 (59.5), p = 0.06). Hospitalized respondents with long COVID symptoms reported greater limitations on everyday activities from their symptoms compared to non-hospitalized respondents (p < 0.0001) and tended to experience a greater impact on returning to work (unable to return to work-hospitalized: 20 (19.1%); non-hospitalized: 6 (4.5%), p < 0.0001). No significant differences in self-reported long COVID symptoms were found between male and female respondents in both groups (p > 0.05). This study provides novel data to further support that individuals who were hospitalized for COVID-19 appear more likely to experience long COVID symptoms.

Patient Experiences With Virtual Care During the COVID-19 Pandemic: Phenomenological Focus Group Study.

BACKGROUND: Virtual care has expanded during the COVID-19 pandemic and enabled greater access and continuity of care for many patients. From a patient-oriented research perspective, understanding the patient experience with virtual care appointments is an important first step in identifying ways to better support patient use and satisfaction. OBJECTIVE: The purpose of this qualitative study was (1) to explore patients' experiences and perspectives with the adoption and use of virtual care during COVID-19 in Newfoundland and Labrador, Canada, and (2) identify the education and informational needs of patients to inform future strategies for supporting patient use of virtual care. METHODS: Using a phenomenological approach, we conducted a focus group interview with a purposive sample of patient representatives representing a cross-section of the population of the province of Newfoundland and Labrador. Five patient representatives were recruited from the Newfoundland and Labrador Support Patient Advisory Council and participated in the focus group. The focus group was conducted in February 2022 via videoconferencing technology. Using thematic analysis, we identified several recurrent themes that described respondents' experiences with the use of virtual care during COVID-19, as well as their perceptions of education and informational needs to support more effective patient use of virtual care. RESULTS: Respondents felt that virtual care is a beneficial addition to the health care system, enabling greater convenience and access to health care services. Key barriers and challenges in adopting and using virtual care appear to primarily arise from patients' lack of knowledge, understanding, and familiarity with respect to virtual care. Cost, technological access, connectivity, and low digital literacy were challenges for some patients, particularly in rural communities and among older patient population. Patient education and support were critical and needed to be inclusive, easy to understand, and include information regarding privacy, security, consent, and the technology itself. The types of patient education experiences regarded as most helpful included peer support and knowledge sharing among patients themselves. CONCLUSIONS: Beyond the COVID-19 pandemic, virtual care will have a continuing role in enhancing the continuity of care for patients through more convenient access. The education and informational needs of patients are important considerations in promoting the adoption and use of virtual care. Key education and informational needs and strategies were identified to enable and empower patients with the knowledge, digital literacy skills, and support to effectively use virtual care.

How Older Persons and Health Care Professionals Co-designed a Medication Plan Prototype Remotely to Promote Patient Safety: Case Study.

BACKGROUND: Harm from medications is a major patient safety challenge. Most adverse drug events arise when a medication is prescribed or reevaluated. Therefore, interventions in this area may improve patient safety. A medication plan, that is, a plan for continued treatment with medications, may support patient safety. Participation of patients in the design of health care products or services may improve patient safety. Co-design, as in the Double Diamond framework from the Design Council, England, can emphasize patient involvement. As the COVID-19 pandemic brought restrictions to face-to-face co-design approaches, interest in remote approaches increased. However, it is uncertain how best to perform remote co-design. Therefore, we explored a remote approach, which brought together older persons and health care professionals to co-design a medication plan prototype in the electronic health record, aiming to support patient safety. OBJECTIVE: This study aimed to describe how remote co-design was applied to create a medication plan prototype and to explore participants' experiences with this approach. METHODS: Within a case study design, we explored the experiences of a remote co-design initiative with 14 participants in a regional health care system in southern Sweden. Using descriptive statistics, quantitative data from questionnaires and web-based workshop timestamps were analyzed. A thematic analysis of the qualitative data gathered from workshops, interviews, and free-text responses to the survey questions was performed. Qualitative and quantitative data were compared side by side in the discussion. RESULTS: The analysis of the questionnaires revealed that the participants rated the experiences of the co-design initiative very high. In addition, the balance between how much involved persons expressed their wishes and were listened to was considered very good. Marked timestamps from audio recordings showed that the workshops proceeded according to the plan. The thematic analysis yielded the following main themes: Everyone's perspective matters, Learning by sharing, and Mastering a digital space. The themes encompassed what helped to establish a permissive environment that allowed the participants to be involved and share viewpoints. There was a dynamic process of learning and understanding, realizing that despite different backgrounds, there was consensus about the requirements for a medication plan. The remote co-design process seemed appealing, by balancing opportunities and challenges and building an inviting, creative, and tolerant environment. CONCLUSIONS: Participants experienced that the remote co-design initiative was inclusive of their perspectives and facilitated learning by sharing experiences. The Double Diamond framework was applicable in a digital context and supported the co-design process of the medication plan prototype. Remote co-design is still novel, but with attentiveness to power relations between all involved, this approach may increase opportunities for older persons and health care professionals to collaboratively design products or services that can improve patient safety.

A review of the results from a patient experience survey of the palliative radiotherapy bone metastases service

Introduction:A patient experience survey was undertaken as part of the role of the Macmillan Consultant Therapy Radiographer for the bone and brain metastases patients to inform future development of the service.Method:A questionnaire was developed and approved by the Trust's local Questionnaire, Interview and Survey Group to survey the experiences and satisfaction of the service including the informed consent process, radiotherapy appointments and overall experience and satisfaction. The survey used qualitative and quantitative methods, including Likert Scales and free comment boxes. The responses were analysed by counting the frequency of each response and identifying any themes in free text responses.Results:Most patients were satisfied with the consent process with 1/36 patients reporting a lack of understandable information and 4/36 wanting more side effect information. The option of plan and treat was a preference of 53% of patients due to travelling back and forth to the centre;however, only 6% stated that they wanted two separate appointments. Ninety-four percent of patients felt that they had complete confidence and trust in the professional who consented them and 86% did not feel fully involved in the decision-making process. Overall, the service was rated as 10/10 by 61% of patients (n = 36).Conclusions:The patients surveyed were satisfied with their experience of the Palliative Radiotherapy Service;however, it needs to be developed further to meet the needs and expectations of the service users.

The role of teledentistry in oral surgery during the COVID-19 pandemic

Objectives: Evaluation of patient experience of teledentistry during the coronavirus pandemic and establishing the clinical effectiveness of teleclinics in this context. Method(s): 103 follow-up patients who had a telephone review during the pandemic were included. A five-item, five-point Likert-scale telephone survey was used to gauge patient experience. In addition, retrospective analysis of these patients' electronic records was done to establish effectiveness of the telephone review. Patients' responses and data collected were then analysed. Result(s): In terms of patient experience of their telephone review, 70% found the telephone review was useful, 77% felt their concerns were addressed, 99% felt it was easy to access and time saving, 94% felt they could discuss their healthcare matters on the phone, and 62% felt they preferred telephone reviews rather than face-to-face reviews for their follow-up appointments. When analysing effectiveness of the telephone review, 62% of patients could be discharged following the teleconsultation, suggesting it was sufficient alone to complete these patients' care. All relevant clinical information was present for 98% of the teleconsultations to proceed. Results showed teledentistry was particularly effective for follow-up patients requiring a post-operative review or finalisation of treatment plans. Conclusion(s): Patients had a positive experience of telephone clinics for the provision of their routine follow-up care. In addition, teledentistry is shown to be a means of increasing capacity for face-to-face reviews, in turn reducing waiting times and further improving patient experience. Appropriate case selection for teledentistry is essential. Teledentistry is an efficient and effective tool for patient care when used suitably and can have an important role in routine patient care beyond the pandemic.Copyright © 2020

Patients' experiences and reasons for unplanned return visits to the emergency department: A qualitative study.

AIMS: The aim of this study was to explore the reasons for and experiences of patients who make an unplanned return visit to the emergency department. DESIGN: This study forms the qualitative phase of a larger explanatory sequential mixed methods study and is informed by interpretive description. The paper was prepared using the consolidated criteria for reporting qualitative research. METHODS: Semi-structured patient interviews were conducted over a 3-month period (July-September 2021). Data were analysed using reflexive thematic analysis. RESULTS: Interviews from 13 participants generated findings related to experiences at and following their initial visit that contributed to their decision to return to the emergency department. Four themes were developed: (1) Patients experience barriers to feeling heard and having their concerns addressed; (2) Patients have little choice but to place their trust in clinicians; (3) Patients unexpectedly experience persistent symptoms which cannot be managed at home; and (4) Patients develop a sense of urgency about having their condition treated. CONCLUSION: A negative experience at the initial ED visit may have dual conflicting impacts. It can contribute to patients' perceived need for a return visit because they are ill-equipped to manage their condition at home, and it can also contribute to their initial reluctance to return to the ED when symptoms persist. Nurses and other clinicians working in ED need to actively build patient's experiential trust through clear communication, timely consultation and shared decision-making at discharge, which in turn can increase patient's confidence and capability to self-manage their condition. This study adds to the current body of literature about return visits by highlighting that a more positive experience of ED may assist patients to make better-informed decisions about when and how to seek treatment and minimize unnecessary and unplanned return visits. Whilst not an intended topic for exploration in this study, the COVID-19 pandemic influenced patients' experiences at both initial and return ED visits and limited their ability to access primary healthcare options. These experiences contributed to patients' decisions to make a return visit.

How has the COVID-19 pandemic affected patients' experience of pain management therapy?

Objectives: The current service evaluation aimed to explore the impact of COVID-19 on patients' experiences of pain management therapy. The study examined the barriers and benefits of the move from face-to-face to eHealth methods of delivery. Design: A service evaluation was conducted in an outpatient pain clinic in an NHS Trust in the East of England. A qualitative approach was taken using semi-structured interviews. Methods: Participants were recruited through a health psychology service operating as part of a multidisciplinary pain management clinic. Six patients, aged 39-67, were interviewed one-to-one using the online platform ZoomTM. During COVID-19, participants had individual or group pain management therapy via telephone or video conferencing. All interviews were transcribed using Otter.aiTM and thematic analysis was performed. The study was approved by internal clinical governance for service evaluations and the authors adhered to the BPS Code of Human Research Ethics. Results: Three key themes emerged from the analysis; Benefits Aside From Pain Relief, Limited Their Experience, and COVID- 19: A D ouble-Edged Sword. Conclusion: Findings suggested patients were able to benefit from pain management therapy despite the impact of COVID-19 on daily routines and pain experience. Adopting eHealth methods during the pandemic was an effective means of accessing pain management therapy. These methods allowed patients to continue to benefit from peer support and learn about skills and resources regarding self-management, whilst also improving accessibility for those with chronic pain. Yet, these methods are not without their limitations. Technical issues and difficulties creating therapeutic connections with psychologists limited patients' experience of pain management therapy.

Switching from natalizumab administration at the day hospital to administration at home. A 1 year prospective study of patient experience and quality of life in 30 consecutive patients with multiple sclerosis (TYSAD-35).

BACKGROUND: In the context of the COVID-19 pandemic, French health authorities allowed the home administration of natalizumab by a healthcare-at-home service. We evaluated the patients' perception of care quality following the transition from day-hospital to home natalizumab administration. METHODS: Thirty relapsing-remitting multiple sclerosis (MS) patients treated with natalizumab were prospectively evaluated for one year after changing onto a home treatment procedure, using MusiCare, the first MS-specific questionnaire to evaluate patient experience and MusiQol. A numerical rating scale score for satisfaction and a dedicated questionnaire concerning patient experience were completed after each infusion. The primary endpoint was the mean difference in MusiCare score between baseline and 12 months. RESULTS: From June 2020 to November 2021, 306 infusions were performed at home. Three patients withdrew from the study (one lost to follow-up and two preferred to return at the day hospital). No worsening of patient experience or quality of life was observed. The mean scores of the Musicare dimensions were higher at 12 months than at baseline, significantly for the "relationship with healthcare professionals" (p = 0.0203). The MusiQol global score remained stable but the coping and friendship dimensions were significantly better at M12 than at baseline (p = 0.0491 and p = 0.0478, respectively). The satisfaction questionnaire highlighted some pain during the infusions (21.8%) and contradictions between healthcare professionals (17.2%). The mean score for satisfaction with care was 9.1/10. No safety concerns were identified. CONCLUSION: The positive experience of patients with home natalizumab administration provides an important opportunity to improve the quality of patient care.

Patient and Healthcare Professional Insights of Home- and Remote-Based Clinical Assessment: A Qualitative Study from Spain and Brazil to Determine Implications for Clinical Trials and Current Practice.

INTRODUCTION: The SARS-CoV-2 virus pandemic has accelerated the growing trend towards using home- and remote-based medical testing (H/RMT). The aim of this study was to gather insights and explore the opinions of patients and healthcare professionals (HCPs) in Spain and Brazil regarding H/RMT and the impact of decentralised clinical trials. METHODS: This qualitative study consisted of in-depth open question interviews of HCPs and patients/caregivers followed by a workshop that aimed to determine the advantages and barriers to H/RMT in general, and in the context of clinical trials. RESULTS: There were 47 participants in the interviews (37 patients, 2 caregivers, 8 HCPs) and 32 in the validation workshops (13 patients, 7 caregivers, 12 HCPs). The main advantages for the use of H/RMT in current practice were the comfort and convenience, the ability to improve the relationship between HCPs and patients and personalise patient care, and the increased patient awareness towards their disease. Barriers to H/RMT included accessibility, digitalisation, and the training requirements for both HCPs and patients. Furthermore, according to the Brazilian participants, there is a general distrust in the logistical management of H/RMT. Patients indicated that the convenience of H/RMT did not influence their decision to participate in a clinical trial, with the main reason for participating in a clinical trial being to improve health; however, H/RMT in clinical research does aid adherence to the long-term follow-up associated with trials and provides access to patients living far from the clinical sites. CONCLUSION: Insights from patients and HCPs suggest that the advantages of H/RMT may outweigh the barriers, and that social, cultural and geographical factors and the HCP-patient relationship are critical aspects to be considered. Moreover, the convenience of H/RMT does not appear to be a driver for participating in a clinical trial but can facilitate patient diversity and study adherence.

Celiac Disease and the Gluten Free Diet during the COVID-19 Pandemic: Experiences of Children and Parents.

The COVID-19 pandemic perturbed the everyday life of children and those with chronic illnesses, along with the lives of their families. Patients with celiac disease (CD) follow a strict gluten-free diet (GFD), and gluten ingestion is associated with negative health outcomes. The aim of this study was to investigate the experiences of children with CD and their families concerning their GFD, symptoms and CD management during the first period of the COVID-19 pandemic. A cross-sectional questionnaire-based study was performed including 37 Dutch pediatric patients with CD, along with their parents. The majority reported good compliance to the GFD and stated that the diet was easier to follow during the pandemic, mainly due to eating more meals in the home. Some discovered a greater variety of GF products by utilizing online shopping, potentially increasing the financial burden of the GFD. Concerning general dietary habits, 21.6% reported a healthier eating pattern, in contrast to 37.8% and 10.8% who consumed more unhealthy snacks and fewer fruits and vegetables, respectively, than normal during the pandemic. The natural experiment of the COVID-19 pandemic provides valuable information regarding the management of pediatric CD. Education on healthy dietary patterns is important, especially for children with restrictive diets, and the findings of this study show that there is room for improvement in this respect, regardless of the current pandemic.

Patient and caregiver experience with telehealth for surgical cancer care: A qualitative study.

INTRODUCTION: The COVID-19 pandemic led to telemedicine adoption for many medical specialties, including surgical cancer care. To date, the evidence for patient experience of telemedicine among patients with cancer undergoing surgery is limited to quantitative surveys. Thus, this study qualitatively assessed the patient and caregiver experience of telehealth visits for surgical cancer care. METHODS: We conducted semistructured interviews with 25 patients with cancer and three caregivers who had completed a telehealth visit for preanesthesia or postoperative visits. Interviews covered visit descriptions, overall satisfaction, system experience, visit quality, what roles caregivers had, and thoughts on what types of surgery-related visits would be appropriate through telehealth versus in-person. RESULTS: Telehealth delivery for surgical cancer care was generally viewed positively. Multiple factors influenced the patient experience, including prior experience with telemedicine, ease of scheduling visits, smooth connection experiences, having access to technical support, high communication quality, and visit thoroughness. Participants identified use cases on telehealth for surgical cancer care, including postoperative visits for uncomplicated surgical procedures and educational visits. CONCLUSIONS: Patient experiences with telehealth for surgical care are influenced by smooth system experiences, high-quality patient-clinician communications, and a patient-centered focus. Interventions are needed to optimize telehealth delivery (e.g., improve telemedicine platform usability).

Community Pharmacists' Views on the Early Stages of Implementation of a National Pilot Independent Prescribing Service in Wales: A Qualitative Study.

Background: A pilot Independent Prescribers' Service (IPS) was introduced in 13 community pharmacies across Wales in June 2020. Independent Pharmacist Prescribers (IPPs) could prescribe in the areas of management of acute conditions, contraception, or opioid withdrawal, as agreed with local commissioners. Access to the patients' medical records was provided via Choose Pharmacy, the national community pharmacy IT platform. Objective: To explore the experiences of IPPs delivering the service and commissioners responsible for financial resources regarding the IPS in Wales. Methods: A qualitative methodology was employed, with purposive sampling, semi-structured interviews, and inductive thematic analysis. Results: Five themes were constructed from 13 interviews (n=9 IPPs; n=4 commissioners): (i) patient experience and safety; (ii) professional enablement and rebalancing workload of GPs; (iii) role and limitations of remote consultations; (iv) funding and business model; (v) functionality on Choose Pharmacy to support patient care. The design of the service allowed pharmacists to determine how best to deliver the IPS, maximizing access for patients and promoting a sense of professional value amongst pharmacists. Conclusion: This study builds on the body of evidence on enhanced patient experience with prescribing services in the community, reinforcing that IPPs have a key role in rebalancing management of common conditions from GP surgeries to community pharmacies. Several considerations need to be addressed to ensure future success of the service implementation, delivery and enhanced sustainability, such as formal referral pathways and access to medical records. These can be used by other commissioning bodies in the UK and internationally to build a network of suitably supported IPPs, confident to appropriately deal with uncomplicated acute and chronic conditions; and liaise with primary and/or secondary care when referrals are needed.

Perceptions and Use of Telehealth Among Diverse Communities: Multisite Community-Engaged Mixed Methods Study.

BACKGROUND: Telehealth has been increasingly adopted by health care systems since the start of the COVID-19 pandemic. Although telehealth may provide convenience for patients and clinicians, there are several barriers to accessing it and using it effectively to provide high-quality patient care. OBJECTIVE: This study was part of a larger multisite community-engaged study conducted to understand the impact of COVID-19 on diverse communities. The work described here explored the perceptions of and experience with telehealth use among diverse and underserved community members during COVID-19. METHODS: We used mixed methods across three regions in the United States (Midwest, Arizona, and Florida) from January to November 2021. We promoted our study through social media and community partnerships, disseminating flyers in English and Spanish. We developed a moderator guide and conducted focus groups in English and Spanish, mostly using a videoconferencing platform. Participants were placed in focus groups with others who shared similar demographic attributes and geographic location. Focus groups were audio-recorded and transcribed. We analyzed our qualitative data using the framework analytic approach. We developed our broader survey using validated scales and with input from community and scientific leaders, which was then distributed through social media in both English and Spanish. We included a previously published questionnaire that had been used to assess perceptions about telehealth among patients with HIV. We analyzed our quantitative data using SAS software and standard statistical approaches. We examined the effect of region, age, ethnicity/race, and education on the use and perceptions of telehealth. RESULTS: We included data from 47 focus groups. Owing to our mode of dissemination, we were not able to calculate a response rate for the survey. However, we received 3447 English-language and 146 Spanish-language responses. Over 90% of participants had internet access and 94% had used telehealth. Approximately half of all participants agreed or strongly agreed that telehealth would be beneficial in the future because it better fit their schedules and they would not need to travel. However, approximately half of the participants also agreed or strongly agreed they would not be able to express themselves well and could not be examined when using telehealth. Indigenous participants were especially concerned about these issues when compared to other racial groups. CONCLUSIONS: This work describes findings from a mixed methods community-engaged research study about telehealth, including perceived benefits and concerns. Although participants enjoyed the benefits of telehealth (eg, not having to travel and easier scheduling), they also had concerns (eg, not being able to express themselves well and not having a physical exam) about telehealth. These sentiments were especially notable among the Indigenous population. Our work highlights the importance of fully understanding the impact of these novel health delivery modalities on the patient experience and actual or perceived quality of care received.