Views of patients with obesity on person-centred care: A Q-methodology study.

INTRODUCTION: To better accommodate patients with obesity, the adoption of a person-centred approach to healthcare seems to be imperative. Eight dimensions are important for person-centred care (PCC): respect for patients' preferences, physical comfort, the coordination of care, emotional support, access to care, the continuity of care, the provision of information and education, and the involvement of family and friends. The aim of this study was to explore the views of patients with obesity on the relative importance of the dimensions of PCC. METHODS: Q methodology was used to study the viewpoints of 21 patients with obesity on PCC. Respondents were asked to rank 31 statements about the eight dimensions of PCC by level of personal significance. Using by-person factor analysis, distinct viewpoints were identified. Respondents' comments made while ranking were used to verify and refine the interpretation of the viewpoints. RESULTS: Five distinct viewpoints were identified: (1) 'someone who listens in an unbiased manner', (2) 'everything should run smoothly', (3) 'interpersonal communication is key', (4) 'I want my independence', and (5) 'support for myself and my loved ones'. Viewpoint 1 was supported by the largest number of respondents and explained the most variance in the data, followed by viewpoint 3 and the other viewpoints, respectively. CONCLUSION: Our findings highlight the need for tailored care in obesity treatment and shed light on aspects of care and support that are most important for patients with obesity. PATIENT CONTRIBUTION: Our sample consisted of patients. Patients were also involved in the development of the statement set through pilot testing.

Patient experiences and views on pharmaceutical care during adjuvant endocrine therapy for breast cancer: A qualitative study.

OBJECTIVE: The use of adjuvant endocrine therapy (AET) after primary treatment of hormone receptor-positive breast cancer reduces the risk of recurrence and mortality. However, non-adherence is still common. Limited consideration has been given to how users deal with AET and the role of pharmaceutical care. Therefore, this study aims to obtain insight into the needs and wishes of women using AET regarding pharmaceutical care and eHealth. METHODS: This is a qualitative explorative study comprising semi-structured interviews (n = 16) and a focus group (n = 5) among women who use or used AET after primary early-stage breast cancer (EBC) treatment using a thematic analysis approach. RESULTS: Three themes emerged from the interviews and focus group: (1) experiences with AET use, (2) experiences with provided information and (3) needs and wishes regarding pharmaceutical care. Most women were highly motivated to use AET and indicated to have received useful information on AET. However, many expressed a strong need for more elaborate tailored and timely provided information on AET. They acknowledged the accessibility of pharmacists but reported that currently, pharmacists are hardly involved in AET care. Several women considered eHealth useful to obtain counselling and reliable information. CONCLUSION: Women need more comprehensive information and follow-up in primary setting after initial cancer treatments. A more elaborate role for the pharmacy and eHealth/mHealth, especially with regard to counselling on side effects and side effect management, could potentially improve pharmaceutical care.

The role of Magnetic Resonance Images (MRIs) in coping for patients with brain tumours and their parents: a qualitative study.

BACKGROUND: When children and young people (CYP) are diagnosed with a brain tumour, Magnetic Resonance Imaging (MRI) is key to the clinical management of this condition. This can produce hundreds, and often thousands, of Magnetic Resonance Images (MRIs). METHODS: Semi-structured interviews were undertaken with 14 families (15 parents and 8 patients), and analysed using Grounded Theory. Analysis was supported by the Framework Method. RESULTS: Although the focus of the research was whether paediatric patients and their families find viewing MRIs beneficial, all patients and parents discussed difficult times during the illness and using various strategies to cope. This article explores the identified coping strategies that involved MRIs, and the role that MRIs can play in coping. Coping strategies were classified under the aim of the strategy when used: 'Normalising'; 'Maintaining hope and a sense of the future'; 'Dealing with an uncertain future'; and 'Seeking Support'. CONCLUSIONS: Coping and finding ways to cope are clearly used by patients and their families and are something that they wish to discuss, as they were raised in conversations that were not necessarily about coping. This suggests clinicians should always allow time and space (in appointments, consultations, or impromptu conversations on the ward) for patient families to discuss ways of coping. MRIs were found to be used in various ways: to maintain or adapt normal; maintain hope and a sense of the future; deal with an uncertain future; and seek support from others. Clinicians should recognise the potential for MRIs to aid coping and if appropriate, suggest that families take copies of scans (MRIs) home. Professional coaches or counsellors may also find MRIs beneficial as a way to remind families that the child is in a more stable or 'better' place than they have been previously.

Clustering patients and caregivers for technology design: A step prior to the design of an innovative technological device for the detection of epileptic seizures.

AIMS: Seizure detection using heart rate variability, from a detailed analysis by deep learning analysis system, may help patients with epilepsy to manage their symptoms. This exploratory study aims to identify patient and caregiver groups, according to acceptability factors. METHODS: Two versions of the same questionnaire were designed to survey quality of life, self-efficacy, and patients with epilepsy and caregivers on seizure detection acceptability using a patch, after watching a video that described a patch connected to a companion application. Participation was voluntary and anonymous. RESULTS: Responses from 68 patients with epilepsy and 33 caregivers were collected. Patients with epilepsy were grouped into three clusters: supportive, indeterminate, and reluctant to use the technology. Caregivers were also grouped into three clusters: supportive, reluctant to use the technology, either with sensitivity to their environment, or with hedonic motivation. The clusters enable the distinction between participants in self-efficacy. CONCLUSIONS: Clustering of patients with epilepsy and caregivers should be a prerequisite to the design of a technological device intended to promote self-management of seizure detection. These groupings distinguish those who are favorable, reluctant or undecided to use the technology. These can be based on an assessment of self-efficacy.

Seizure detection devices: A survey of needs and preferences of patients and caregivers.

AIMS: Seizure detectors could have many positive effects on the quality of life of people with epilepsy (PWE) such as alarms to reduce seizure-related injuries or reliable seizure counts leading to improved epilepsy management. As seizure detection gains increasing interest within the epilepsy research community, guidelines for patient-centered designs are needed. This study aims to detail the preferences, needs and concerns regarding potential seizure detectors, of PWE and their caregivers across Canada. METHODS: Two questionnaires were designed to survey PWE and their caregivers on seizure detection acceptability and to collect general clinical characteristics. The surveys were available online for nine weeks and were promoted by Canadian organizations of PWE. Participation was voluntary and anonymous. RESULTS: Responses from 221 PWE and 171 caregivers were collected. Ninety-seven percent of PWE and 99% of caregivers expressed interest in seizure detection. Most would use seizure detectors continuously, in conjunction with a seizure diary, and wanted automated alarms. Smartwatches and bracelets/rings were considered most acceptable and would be worn continuously by 58% and 61% of PWE, respectively. Additional value was attributed to multimodal seizure detection. Responders were most concerned about false negatives, comfort and cost. They expected seizure detection to improve their quality of life and quality of care, and felt confident in their ability to use a seizure detector. CONCLUSIONS: While PWE and caregivers in Canada show great enthusiasm for seizure detection, their opinions are shaped by their perception of the effectiveness and reliability of this technology and its cost. A preliminary technology acceptance model and recommendations promoting the development of seizure detectors demonstrating an understanding of their future users are presented. Future investigations should focus on a larger population of patients who have previously used seizure detection devices to assess user-feedback.

'But you don't look sick': a qualitative analysis of the LUPUS UK online forum.

Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients' perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members' lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.

Who should access germline genome sequencing? A mixed methods study of patient views.

Implementation of any new medical test, including germline genome sequencing (GS) to inform cancer risk, should take place only when a test is effective, ethically justifiable and acceptable to a population. Little empirical evidence exists on patient views regarding GS for cancer risk. The aim of this study was to elicit opinions on who should be offered GS and who should pay for it. Participants with a probable genetic basis for their cancer (n = 335) and blood relatives (n = 199) were recruited to undergo GS and invited to complete questionnaires at baseline. A subset (n = 40) also participated in qualitative interviews about their views regarding access to GS to detect cancer risk. Our response rate was 92% for questionnaires and 100% for interviews. Participants expressed high enthusiasm overall for access to GS for those with a family history of cancer and anyone who requested testing, but enthusiasm was lower for universal access, if opting out was possible and finances not an issue. Rationales for these views reflected maximising the sound use of resources. Challenges to introducing community screening via GS to limit cancer burden were raised, including the current limits of science and individual ability to cope with uncertain results. Participants undergoing GS supported cancer risk testing for those with a family history of cancer but were concerned about the challenges of designing and implementing a population-based GS cancer-screening program.

The role of pharmacists in the pharmaceutical care of asthma patients in Yogyakarta, Indonesia: the patients' views.

Introduction: Community pharmacists are one of the most frequently accessed health professionals who can be involved in the provision of ongoing asthma management within the primary care setting. The aim of this study was to identify patients' views regarding current asthma care provided by their pharmacists and their perspectives on future pharmacy-based asthma services.Methods: This is a qualitative approach with an interview guide. Asthma patients were purposively selected. Interviews were conducted from April to June 2017. Patient's opinions about asthma and its management and their experiences regarding asthma care provided by pharmacists were collected. Data were analyzed using content analysis.Results: Thirty-three interviews were conducted. Asthma literacy was low. There was dis-engagement with the health care system, with only a few participants trusting conventional health care professionals. Alternative medicine systems and practitioners were better trusted and participants had strong preferences for family/peer involvement in their asthma care. Participants also had misunderstandings regarding their asthma disease and medications. Participants had experienced little pharmaceutical care provided by pharmacists but would welcome it in the future.Conclusion: Given the accessibility of community pharmacy venues and readiness of the profession for more involved care of chronic disease patients, it may be recommended that Indonesian community pharmacists should adopt the provision of pharmaceutical care models for asthma. Such pharmaceutical care models need to incorporate patients' unique sociocultural health beliefs, preferences for alternative medicines and family/social peer involvement as well as stronger collaboration between pharmacists and physicians.

Patients' perception of communication at the interface between primary and secondary care: a cross-sectional survey in 34 countries.

BACKGROUND: Poor communication between general practitioners (GPs) and medical specialists can lead to poorer quality, and continuity, of care. Our study aims to assess patients' perceptions of communication at the interface between primary and secondary care in 34 countries. It will analyse, too, whether this communication is associated with the organisation of primary care within a country, and with the characteristics of GPs and their patients. METHODS: We conducted a cross-sectional survey among patients in 34 countries. Following a GP consultation, patients were asked two questions. Did they take to understand that their GP had informed medical specialists about their illness upon referral? And, secondly, did their GP know the results of the treatment by a medical specialist? We used multi-response logistic multilevel models to investigate the association of factors related to primary care, the GP, and the patient, with the patients' perceptions of communication at the interface between primary and secondary care. RESULTS: In total, 61,931 patients completed the questionnaire. We found large differences between countries, in both the patients' perceptions of information shared by GPs with medical specialists, and the patients' perceptions of the GPs' awareness of the results of treatment by medical specialists. Patients whose GPs stated that they 'seldom or never' send referral letters, also less frequently perceived that their GP communicated with their medical specialists about their illness. Patients with GPs indicating they 'seldom or never' receive feedback from medical specialists, indicated less frequently that their GP would know the results of treatment by a medical specialist. Moreover, patients with a personal doctor perceived higher rates of communication in both directions at the interface between primary and secondary care. CONCLUSION: Generally, patients perceive there to be high rates of communication at the interface between primary and secondary care, but there are large differences between countries. Policies aimed at stimulating personal doctor arrangements could, potentially, enhance the continuity of care between primary and secondary care.

Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.

BACKGROUND: As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients' views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform. METHODS: We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy (MD) patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD. RESULTS: A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire (n = 40). The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers. CONCLUSION: Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams.

Young patients' views about provided psychiatric care.

BACKGROUND: Psychiatric illness is common among young adults, but there are only a few studies examining their views about the care they receive. There is a paradigm shift towards person-centred care and, therefore, a need for patients' perspectives in the development of clinical guidelines. AIM: The aim of this study was to examine the views about provided psychiatric care in a group of young adult psychiatric patients. METHOD: This study was part of a larger study. Patients between the ages of 19-29 years old (n = 127) diagnosed with bipolar disorder, borderline personality disorder, and/or attention deficit hyperactivity disorder were interviewed. Participants answered open-ended questions concerning their views about provided psychiatric care in six different areas. RESULT: The results were categorized into six themes: (1) Wish for better diagnostic assessments, (2) Dissatisfaction with treatment, (3) Inadequate information, (4) Lack of professional attitude, (5) Feeling abandoned, and (6) Satisfaction with care. CONCLUSION: Young psychiatric patients expressed a need for improvement of services that, if implemented, could make psychiatric care more person-centred.

Patients' perceptions and experiences of venous leg ulceration and their attitudes to larval therapy: an in-depth qualitative study.

BACKGROUND: Venous leg ulcers are a common and distressing condition that can impair quality of life. Larval therapy has been widely promoted for the treatment of different types of chronic wounds, yet little is known about its acceptability to patients. OBJECTIVES: To explore patients' experiences of venous leg ulceration and of the acceptability of larval therapy as a treatment. DESIGN: Qualitative study, using semi-structured interviews alongside a randomized controlled trial. Interview data were transcribed and analysed for thematic content. Data were collected from April 2007 to July 2007. SETTING AND PARTICIPANTS: Eighteen people (12 men, 6 women), aged between 29 and 93 years (median age 64 years), with at least one venous leg ulcer, took part in the study. Fourteen people were recruited from two vascular clinics (one attached to a hospital and the other located in a community setting). A further four people were recruited through referral from a team of community nurses. FINDINGS: Participants portrayed lives blighted by the presence of one or more leg ulcers. The majority were willing to try 'maggots' (larvae) and able to overcome feelings of squeamishness because of their strong desire to heal their ulcers. Five people treated with larvae were included in the study. Initial improvements in the condition of their ulcers were not sustained, and two participants experienced severe pain. DISCUSSION AND CONCLUSIONS: Patients may hold unrealistic expectations that larval therapy will effect a longed-for cure for their leg ulcer(s) but an absence of healing may lead to feelings of disappointment or despair.

The role of patients in pressure injury prevention: a survey of acute care patients.

BACKGROUND: Pressure injury prevention (PIP) is an important area of patient safety. Encouraging patient participation in care is a growing trend in healthcare as it can increase adherence to treatment plans and improve outcomes. Patients in acute care settings may be able to take on an active role in PIP. However, there is limited information on patients' views of their perceived role in PIP. The aims of our study were to survey hospitalised patients' views on a) their perceived roles in PIP and, b) factors that enable or inhibit patient participation in PIP strategies. METHODS: Eligible participants were 18 years of age or older, from a neurology or orthopaedic ward and had been admitted to hospital at least 24 hours prior to enrolment in the study. A questionnaire comprising of fixed and open-ended responses was administered by researchers to participants. Numerical data was analysed descriptively and free-text comments were content-analysed and grouped into themes. RESULTS: The mean age of participants (n = 51) was 65 years (sd = 16.6); over half were female and three quarters were orthopaedic surgical patients. Eighty-six per cent of participants understood the concept of pressure injury and 80% agreed that patients have a role in PIP. Participants nominated the following PIP strategies that could be undertaken by patients: Keep skin healthy; Listen to your body and Looking after the inside. Strategies required for patient participation in PIP were represented by three themes: Manage pain and discomfort; Work together; Ongoing PI education. CONCLUSION: To ensure successful participation in PIP, patients require education throughout admission, management of pain and discomfort and a supportive and collaborative relationship with health care staff. Health professionals should identify patient ability and motivation to prevent pressure injury (PI), work in partnership with patients to adhere to PIP, and ensure that PIP actions are facilitated with appropriate pain relief.

Meeting report from the 3rd ISCBH-ERN BOND Achondroplasia Workshop on Long Bone Pathology in Children with Achondroplasia, Salzburg, Austria 22nd June 2024.

A pre-meeting workshop on Long Bone Pathology in Children with Achondroplasia was held in Salzburg, Austria at the 11th International Conference on Children's Bone Health (ICCBH) 22-25 June 2024. There remains poor understanding and awareness amongst physicians managing achondroplasia of the underlying pathophysiology, radiology, natural history and orthopaedic procedures available for long bone deformities and restrictions. The structure of the workshop consisted of presentation of the results of a multinational patient survey on views of leg lengthening in achondroplasia, lectures, a debate and an interactive round table discussion. In total 150 attendees from 71 different cities and 31 countries were in attendance.

French national survey on breast cancer care: caregiver and patient views.

PURPOSE: To improve the quality of care for patients with breast cancer, an analysis of the health-care pathway, considering feedback from both health-care practitioners (HCPs) and patients, is needed. METHODS: Between 2020 and 2022, we conducted a survey at French breast cancer centers and analyzed information from questionnaires completed by HCPs and patients. We collected information on center organization, diagnostic processes, treatment decisions and modalities, supportive care, patient advocacy groups, and work issues. RESULTS: Twenty-three breast cancer centers were included and questionnaires completed by 247 HCPs and 249 patients were analyzed. The centers closely followed the legal French framework for cancer treatments, which includes formal diagnostic announcements, multidisciplinary tumor boards, personalized treatment summaries, and supportive care access. HCPs and patients were satisfied with the time to diagnosis (≤ 2 weeks as evaluated by 75% of patients), time to surgery (mean 61 days), time between surgery and chemotherapy (mean 47 days), and time between surgery and radiotherapy (mean 81 days). Fertility preservation counseling for women under 40 years of age was systematically offered by 67% of the HCPs. The majority (67%) of the patients indicated that they had received a personalized treatment summary; the topics discussed included treatments (92%), tumor characteristics (84%), care pathways (79%), supportive care (52%), and breast reconstruction (33%). Among HCPs, 44% stated that reconstructive surgery was offered to all eligible patients and 57% and 45% indicated coordination between centers and primary care physicians for adverse effects management and access to supportive care should be improved, for chemotherapy and radiotherapy, respectively. Regarding patient advocacy groups, 34% of HCPs did not know whether patients had contact and only 23% of patients declared that they had such contact. For one-third of working patients, work issues were not discussed. Twenty-eight percent of patients claimed that they had faced difficulties for supportive care access. Among HCPs, 13% stated that a formal personalized survivorship treatment program was administered to almost all patients and 37% almost never introduced the program to their patients. Compliance to oral treatments was considered very good for 75-100% of patients by 62% of HCPs. CONCLUSIONS: This study provides an updated analysis of breast cancer care pathways in France. Overall, the initial processes of diagnosis, announcement, and treatment were swift and were in agreement with the best care standards. No barriers to accessing care were identified. Based on the study findings, we proposed several strategies to improve the quality of care for patients in supportive care, coordination with primary care physicians, reconstructive surgery, and fertility preservation access.

The Indispensable Nasal Decongestant: Patients' Views and Perspectives on Nasal Decongestant Overuse.

BACKGROUND: Rhinitis medicamentosa (RM) is a type of nonallergic rhinitis caused by prolonged use of nasal decongestants (NDs). Although it is a preventable phenotype of rhinitis, little is known about patients dealing with this condition. OBJECTIVE: To gain a better understanding of patients' views and experiences of ND overuse, and potential facilitators and barriers to discontinue the overuse. METHODS: We performed a qualitative study using in-depth semistructured interviews with 22 patients who have been using an ND on an almost daily basis for at least 6 months. The interviews were conducted face-to-face, audio-recorded, and transcribed verbatim. Data analysis followed the grounded theory approach. RESULTS: Interviewees described the large impact of nasal congestion on their daily lives. Despite efforts to try other treatment options, the ND was considered the only effective aid to resolve the troublesome symptom. Most participants were aware that the prolonged use was problematic, sometimes leading to hiding behavior in order to avoid criticism by others including their health professionals. Many participants expressed a strong will to discontinue. However, multiple barriers to withdrawal were identified including fear of surgery or the impact of withdrawal on sleep, lack of good alternatives, and negative experiences with past withdrawal attempts. Patients thus face a dilemma in which the barriers to withdrawal currently outweigh the possible benefits. CONCLUSION: The use of NDs is considered indispensable by many chronic users. The facilitators and barriers identified in this study provide opportunities to reduce the use of NDs and the prevalence of RM in the future.

Relevant Study: Patient and Clinician Perspectives on Clinically-Meaningful Outcomes in Advanced Pancreatic Cancer.

Pancreatic ductal adenocarcinoma (PDAC) is an aggressive cancer with a poor prognosis and significant symptom burden. This prospective observational study aimed to evaluate expectations and priorities of patients with advanced PDAC and their clinicians through a study survey and two quality of life (QoL) questionnaires (QLQ-C30 and PAN26) at three time-points: baseline (T1), before (T2) and after (T3) their 1st on-treatment CT scan. Over a 1-year period, 106 patients were approached, 71 patients and 12 clinicians were recruited. Choosing between treatment options, patients prioritised: 54% overall survival (OS), 26% balance between side-effects and OS, 15% could not choose and 5% favoured symptom control. These were significantly different from the clinician's answers (p < 0.001). Patients who prioritised OS had higher symptom burden (p = 0.03) and shorter OS compared to those who prioritised balance (p = 0.01). Most (86%) patients had personal goals they wanted to reach; clinicians knew of these in 12% of instances. Patient and clinicians' views regarding survival improvement from chemotherapy were significantly different: 81% of clinicians and 12% of patients thought 1-2 or 3-6 months extension, 58% of patients and 0% physicians thought 1-5 or >5 years (p < 0.001). At T1, patients had low QoL and worst symptoms were: 'Future worries', 'planning of activities', fatigue and pain. Patients were willing to accept significantly higher amounts of side-effects as a trade-off for extra time, than clinicians thought (p < 0.001). Overall, there are significant discrepancies between patient and clinicians' views about the aims, priorities and expected extension of life.

Patient views on the implementation of artificial intelligence in radiotherapy.

PURPOSE/OBJECTIVE: To date there has been limited research looking at patient views on the implementation of artificial intelligence (AI) in radiotherapy. The aim of this study is to adapt and utilise a validated patient questionnaire to develop an understanding of current patient views on the use of AI in radiotherapy. MATERIALS/METHODS: An existing questionnaire, developed to assess understanding of patients' views on the implementation of AI in radiology, was adapted to the field of radiotherapy. The questionnaire was distributed to cancer patients receiving radiotherapy treatment between November 2021 and March 2022. Completed questionnaires were analysed to assess patient levels of positivity or negativity towards AI. Results were grouped into five factors, representing underlying patient perspectives, and correlation of factors with demographic variables was assessed. RESULTS: In total, 95 patients participated. Overall, there was a moderately negative patient view towards the use of AI in radiotherapy. Certain factors drew a more negative response than others, for example patients desire significant personal interaction with healthcare professionals during the course of their treatment. No significant correlation was found between the demographics of age and gender and the strength of views towards the use of AI in radiotherapy. CONCLUSION: This study has found that there are clear patient concerns around the use of AI in radiotherapy. As the use of AI in this field increases in future years, it will therefore be extremely important to educate and involve patients in the future direction of this technology.

"The Devices Themselves Aren't the Problem"-Views of Patients and Their Relatives on Medical Technical Aid Supply in Home Mechanical Ventilation: An Explorative Qualitative Study.

(1) The supply of medical technical aids and the instructions on using them is critical for home-mechanically ventilated patients and their relatives. However, limited evidence exists on the needs-based nature of this care. (2) Aim: To gain insights into users' views on this form of care, to identify key challenges, and to derive empirically sound preliminary recommendations for its future design. (3) Methods: An explorative qualitative interview study was performed in Germany. Semi-structured interviews were conducted with home-mechanically ventilated patients and their relatives. Patients were selected through purposive sampling. Interviews were audio-recorded, transcribed, and analysed using a content analysis approach. (3) Results: 27 patients and 9 relatives were interviewed. From their point of view, ventilation-specific equipment is generally reliable and is seen as a belonging of the patient. However, if the patient lacks competence in using the technology or if information or instructions are neglected, ambiguous and unsafe situations easily arise. (4) Conclusions: The present study is one of the first to provide insights into technical aid supply in home-mechanical ventilation from the users' point of view. It highlights the need for continuous professional support and for evidence-based educational strategies that promote safety among the users of technical aids in home care.

Exploring the inclusion of under-served groups in trials methodology research: an example from ethnic minority populations' views on deferred consent.

BACKGROUND: Deferred consent is used to recruit patients in emergency research, when informed consent cannot be obtained prior to enrolment. This model of consent allows studies to recruit larger numbers of participants, especially where a surrogate-decision maker may be unavailable to provide consent. Whilst deferred consent offers the potential to promote trial diversity by including under-served groups, it is ethically complex and views about its use amongst these populations require further exploration. The aim of this article is to build upon recent initiatives to improve inclusivity in trials, such as the NIHR INCLUDE project, and consider whether trials methodology research is inclusive, focusing on ethnic minority populations' attitudes towards the use of deferred consent. MAIN TEXT: Findings from the literature suggest that research regarding attitudes toward recruitment methods like deferred consent largely fail to adequately represent ethnic minorities. Many studies fail to report the composition of patient samples or conduct analyses on any differences between specific patient groups. In those that do, the categorisation of ethnic groups is ambiguous. Frequently diversely different groups are considered as more homogenous than they are. Whilst deferred consent is deemed generally acceptable, analysis of patient sub-groups shows that this attitude is not universal. Those from racial and ethnic minority backgrounds reported higher levels of unacceptability, which was impacted by previous first or second-hand experience of its use and historical mistrust in research. However, whilst deferred consent was found to increase the numbers of black participants enrolled in some trials, their over-enrolment in other trials may raise further concerns. CONCLUSIONS: Inclusivity in clinical trials is important, as highlighted by the COVID-19 pandemic. To improve this, we must ensure that methodological studies such as those exploring attitudes to research are inclusive. More effort is needed to understand the views of under-served groups, such as ethnic minorities, toward research in order to improve participation in clinical trials. Our findings echo those from the INCLUDE project, in that better reporting is needed and increasing the confidence of ethnic minority groups in research requires improving representation throughout the research process. This will involve diversifying research teams and ethics committees.