Association between perceived coercion and perceived level of information in involuntarily admitted patients: Results from a multicenter observational study in Switzerland.

BACKGROUND: Involuntary admissions (IA) to psychiatric hospitals are controversial because they interfere with people's autonomy. In some situations, however, they appear to be unavoidable. Interestingly, not all patients perceive the same degree of coercion during IA. The aim of this study was to assess whether the level of knowledge about one's own IA is associated with perceived coercion. METHODS: This multicenter observational study was conducted on n = 224 involuntarily admitted patients. Interviews were conducted at five study centers from April 2021 to November 2021. The Macarthur Admission Experience Survey was administered to assess perceived coercion. Knowledge of involuntary admission, perceptions of information received, and attitudes towards legal aspects of involuntary admission were also assessed. RESULTS: We found that higher levels of knowledge about IA were negatively associated with perceived coercion at admission. Perceived coercion did not differ between study sites. Only half of the patients felt well informed about their IA, and about a quarter found the information they received difficult to understand. DISCUSSION: Legislation in Switzerland requires that patients with IA be informed about the procedure. Strategies to improve patients' understanding of the information given to them about IA might be helpful to reduce perceived coercion, which is known to be associated with negative attitudes towards psychiatry, a disturbed therapeutic relationship, avoidance of psychiatry, and the risk of further coercion.

Patient Satisfaction and Perspectives on Self-Management Education Programs: A Qualitative Study.

Purpose: According to the Centre for Disease Control and Prevention, "Self-management education (SME) refers to programs that help people who have ongoing health conditions learn how to live life to the fullest". Most studies to date have focused on SME outcomes, such as the acquisition of predefined knowledge or skills or quality of life. However, no study has yet investigated patients' satisfaction with SMEs. The aim of the present study was therefore to explore participants' subjective appreciation of SME programs using qualitative methods and formulate propositions based on patients' preferences to improve ultimately clinical outcomes. Patients and Methods: Twenty-five participants from five French SME programs to conduct focus groups were recruited. An inductive approach using grounded theory as an overall methodology orientation for the thematic analysis process has been followed. The study was reported in compliance with the consolidated criteria for reporting qualitative research criteria (COREQ). Results: Patients expressed great satisfaction concerning the effective delivery of SME sessions. They appreciated the considerations for their concerns and needs, the adaptation of sessions' content to their interests and questions, and learning to take care of themselves. Moreover, patients had a positive opinion on the quality of their relationship with health care providers. However, the major point of improvement of SMEs was the opportunity to repeat the program if needed, as this opportunity was not offered. This consideration was particularly salient when patients did not consider themselves autonomous for disease management at the end of the program, ie, when they had low levels of perceived self-efficacy. Conclusion: While patients expressed great satisfaction regarding SME programs, our results suggest that some changes might be needed to make the endpoint of SME interventions coincide with the patient's perception of self-efficacy in disease self-management and ultimately improve clinical outcomes.

State of the art in AIT: The patients' perspective.

BACKGROUND: On the occasion of the 110th anniversary of allergen-specific immunotherapy (AIT), the question arises of "how do patients feel about AIT?". MATERIALS AND METHODS: Informed by questions and feedback provided to MeinAllergiePortal, an online survey with a target of 130 responses was devised and offered for completion by readers. All visitors of MeinAllergiePortal categories addressing inhalant allergies were invited to participate in the survey. Participants were grouped and analyzed by their AIT completion status. The survey was ended once target was met. RESULTS: 121 of 132 participants were familiar with AIT. 1) A majority of patients who completed AIT would choose the therapy again; 2) Physicians do not seem to discuss AIT with all patients with significant symptoms; 3) Adverse reactions appear to be a major reason why patients terminate AIT prematurely; 4) Lack of time, or early response, as often supposed, does not seem to be a major factor leading to discontinuation of AIT. CONCLUSION: Patients' experience and understanding of symptoms (both related to allergic disease, or expected AIT-related adverse events) appear to be key factors related to AIT engagement and adherence. Given the importance of adherence for AIT efficacy, improved education and support strategies may assist patients achieve their treatment goals.

Patient's thoughts and expectations about centres of expertise for PKU.

BACKGROUND: In the Netherlands (NL) the government assigned 2 hospitals as centres of expertise (CE) for Phenylketonuria (PKU), while in the United Kingdom (UK) and Germany no centres are assigned specifically as PKU CE's. METHODS: To identify expectations of patients/caregivers with PKU of CEs, a web-based survey was distributed through the national Phenylketonuria societies of Germany, NL and UK. RESULTS: In total, 105 responded (43 patients, 56 parents, 4 grandparents, 2 other) of whom 59 were from NL, 33 from UK and 13 from Germany. All participants (n = 105) agreed that patients and/or practitioners would benefit from CEs. The frequency patients would want to visit a CE, when not treated in a CE (n = 83) varied: every hospital visit (24%, n = 20), annual or bi-annual (45%, n = 37), at defined patient ages (6%, n = 5), one visit only (22%, n = 18), or never (4%, n = 3). Distance was reported as a major barrier (42%, n = 35). 78% (n = 65) expected CE physicians and dieticians to have a higher level of knowledge than in non-CE centres. For participants already treated in a CE (n = 68), 66% requested a more extensive annual or bi-annual review. In general, psychology review and neuropsychologist assessment were identified as necessary by approximately half of the 105 participants. In addition, 66% (n = 68) expected a strong collaboration with patient associations. CONCLUSION: In this small study, most participants expected that assigning CEs will change the structure of and delivery of Phenylketonuria care.

"This Graft-vs.-Host Disease Determines My Life. That's It."-A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany.

Background: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only curative treatment modality for many patients affected by hematologic malignancies. However, it can cause debilitating long-term effects. Understanding the impact of alloHSCT on all aspects of the patients' life is required for optimal survivorship management. Aim: To explore in-depth HSCT-survivors' experiences and needs post-transplant. Partners were included to provide further information on survivors' needs and how care could be improved in this area. Methods: We conducted semi-structured face-to-face and phone interviews with alloHSCT-survivors and their partners referred to a survivorship clinic in Germany. Theoretical sampling was used to recruit participants. Data were analyzed using framework analysis. Results: Thirty-two survivors (consent rate: 100%, response rate: 100%) and eighteen partners (consent rate: 84%, response rate: 72%) participated. Survivors were aged between 25 and 68 years (Median: 48, IQR: 25.3) and partners were aged between 26 and 64 years (Median: 54, IQR: 16, SD: 12.8). The themes emerging from the data involved survivors' needs included (i) the diversity of long-term treatment side-effects; and (ii) time post discharge as a dynamic process with individual peaks of burden. Survivors and their partners also suggested strategies for mitigating these unmet needs, i.e., (iii) transparent communication and patient empowerment; and (iv) improvement in continuity of care system and help with claiming social benefits as cornerstones of optimal survivorship care. Conclusion: To our knowledge, this is one of the first qualitative studies focused on the views of German alloHSCT-survivors on the long-term effects of alloHSCT and the first study integrating the view of their partners. Healthcare providers could better support survivors with managing their symptoms and adhering to their prescribed care by ensuring comprehensive, transparent communication that helps increase survivors' understanding and involvement in their care. Further efforts should be made to provide patient-centered, continuous survivorship care that involves additional support with navigating the healthcare and social service system. Intervention studies are required to test the effectiveness of the suggested strategies.

Illness perceptions, risk perceptions and worries in patients with early systemic sclerosis: A focus group study.

OBJECTIVES: This study explores illness perceptions, risk perceptions and degree of worry in patients with recently diagnosed systemic sclerosis (SSc). Specifically, it aims to answer whether and how early diagnosis in a stage that disease is relatively mild can impact patients' lives, and if and how disease severity associates with illness perceptions and risk perception. METHODS: Patients with a diagnosis of SSc <2 years were invited to participate in a focus group discussion for in-depth exploration of illness perceptions, risk perceptions and worry. In addition, illness perceptions, risk perceptions and worries were evaluated with the use of questionnaires. To explore how patients perceive SSc, we asked them to draw their disease. Physician global assessment of disease severity was used to measure disease severity. Associations between disease severity, illness/risk perceptions, drawings and elements of the focus group were assessed. RESULTS: We observed three dimensions of illness perception as most relevant for patients: personal control, concern and consequences. Patients with SSc experienced many symptoms and felt low personal control. Concerns about the future were often mentioned, and the majority of patients scored high on the worry questionnaire. None of the patients was preoccupied with prognosis or death. All drawings illustrate the impact of SSc on daily life and psychological well-being. Illness perceptions were highly variable between patients and did not associate with disease severity. CONCLUSION: This study showed that a diagnosis of early SSc had a significant impact on patients' lives, also in the absence of severe disease complications.

Artificial Intelligence in Skin Cancer Diagnostics: The Patients' Perspective.

Background: Artificial intelligence (AI) has shown promise in numerous experimental studies, particularly in skin cancer diagnostics. Translation of these findings into the clinic is the logical next step. This translation can only be successful if patients' concerns and questions are addressed suitably. We therefore conducted a survey to evaluate the patients' view of artificial intelligence in melanoma diagnostics in Germany, with a particular focus on patients with a history of melanoma. Participants and Methods: A web-based questionnaire was designed using LimeSurvey, sent by e-mail to university hospitals and melanoma support groups and advertised on social media. The anonymous questionnaire evaluated patients' expectations and concerns toward artificial intelligence in general as well as their attitudes toward different application scenarios. Descriptive analysis was performed with expression of categorical variables as percentages and 95% confidence intervals. Statistical tests were performed to investigate associations between sociodemographic data and selected items of the questionnaire. Results: 298 individuals (154 with a melanoma diagnosis, 143 without) responded to the questionnaire. About 94% [95% CI = 0.91-0.97] of respondents supported the use of artificial intelligence in medical approaches. 88% [95% CI = 0.85-0.92] would even make their own health data anonymously available for the further development of AI-based applications in medicine. Only 41% [95% CI = 0.35-0.46] of respondents were amenable to the use of artificial intelligence as stand-alone system, 94% [95% CI = 0.92-0.97] to its use as assistance system for physicians. In sub-group analyses, only minor differences were detectable. Respondents with a previous history of melanoma were more amenable to the use of AI applications for early detection even at home. They would prefer an application scenario where physician and AI classify the lesions independently. With respect to AI-based applications in medicine, patients were concerned about insufficient data protection, impersonality and susceptibility to errors, but expected faster, more precise and unbiased diagnostics, less diagnostic errors and support for physicians. Conclusions: The vast majority of participants exhibited a positive attitude toward the use of artificial intelligence in melanoma diagnostics, especially as an assistance system.

Patient attitudes about the clinical use of placebo: qualitative perspectives from a telephone survey.

OBJECTIVES: To examine qualitative responses regarding the use of placebo treatments in medical care in a sample of US patients.Survey studies suggest a deliberate clinical use of placebos by physicians, and prior research has found that although most US patients find placebo use acceptable, the rationale for these beliefs is largely unknown. SETTING: Members of the Outpatient Clinic at the Kaiser Permanente Northern California interviewed research participants who had been seen for a chronic health problem at least once in the prior 6 months. PARTICIPANTS: 853 women (61%) and men, white (58%) and non-white participants aged 18-75 years. PRIMARY AND SECONDARY OUTCOMES: Qualitative responses on perceptions of placebo use from one-time telephone surveys were analysed for common themes and associations with demographic variables. RESULTS: Prior results indicated that a majority of respondents felt it acceptable for doctors to recommend placebo treatments. Our study found that a lack of harm (n=291, 46.1%) and potential benefit (n=250, 39.6%) were the most common themes to justify acceptability of placebo use. Responses citing potential benefit were associated with higher education (r=0.787; p<0.024). Of the minority of respondents who judged it never acceptable for doctors to recommend placebo treatments, the most often referenced rationale was obligation of the doctor to do more (n=102, 48.3%). Additional themes emerged around the issue of whether a doctor was transparent about placebo use, including honesty, patient's right to know and power of the mind. Older age was associated with likelihood to cite overall physician, as opposed to treatment, related themes (r=0.753; p<0.002). CONCLUSIONS: Participants seem to appreciate and understand the lack of harm and potential benefit associated with placebo treatments, while valuing the role of the physician and the patient in its implementation.

The PREDICT (increasing the participation of the elderly in clinical trials) study: the charter and beyond.

There is general agreement that the growth of the numbers of older people throughout the world has significant implications for both health and social care and for the prevention and treatment of disease and disability. The optimum use of pharmaceuticals and possibly nutraceuticals is, and will to a greater extent, therefore be of crucial importance. A snapshot of the current status of older people in relation to the issues discussed in this review is provided in an informative report published by Age UK.

Benefits and challenges perceived by patients with cancer when offered a nurse navigator.

INTRODUCTION: Lack of communication, care and respect from healthcare professionals can be challenges for patients in trajectories of cancer, possibly accompanied by experienced fragmentation of the care, anxiety and worries. One way to try to improve delivery of care is additional help from nurse navigators (NN) offered in a predefined shorter or longer period, but patients' experiences with this have seldom been investigated. AIMS: To explore experiences of nurse navigation offered in a short period of a longer subsequent part of cancer trajectories by patients who can use the help on offer. METHODS: The NNs worked from one hospital department with patients in the transition between primary care and a university hospital before admission. A phenomenological-hermeneutical longitudinal study was performed from referral and until two months after discharge from the hospital. Semi-structured interviews with five patients who could use the help from an NN provided data for the analysis, which started open-minded. RESULTS: Affectional bonds were made to the NN and patients felt that they benefited from her presence and her help, which they requested until one month after discharge. They were disappointed and felt rejected when the contact to the NN stopped. CONCLUSION: In efforts to increase quality of care for patients with cancer we recommend an increased awareness of cultural areas within the healthcare system, which may be an impediment to good communication. Moreover, we recommend paying special attention to critical periods in cancer patients' trajectories, as well as to the theory of attachment to supplement thoughts of continuity of care and coordination in the care for women. In short, it is fine to offer additional help to those who can use it, but in practice as well as in research we recommend awareness of how and when to stop the help, to prevent patients from feeling hurt.