Effects on patient activation of eHealth support in addition to standard care in patients after radical prostatectomy: Analysis of secondary outcome from a randomized controlled trial.

INTRODUCTION: Prostate cancer is often treated with radical prostatectomy, but surgery can leave patients with side effects. Patients who actively take part in their rehabilitation have been shown to achieve better clinical outcomes. eHealth support has the potential to increase patient activation, but has rarely been evaluated in long-term randomized controlled trials. Therefore, we evaluated the effects on patient activation of eHealth support (electronic Patient Activation in Treatment at Home, ePATH) based on motivational theory. The aim was to investigate the effects of eHealth support on patient activation at 6 and 12 months after radical prostatectomy, compared with standard care alone, and associations with baseline patient activation and depression. METHODS: A multicentre randomized controlled trial with two study arms was conducted. Men planned for radical prostatectomy at three county hospitals in southern Sweden were included and randomized to the intervention or control group. The effects of ePATH on the secondary outcome, patient activation, were evaluated for one year after surgery using the patient activation measure and analysed using a linear mixed model. RESULTS: The study included 170 men during 2018-2019. In the intervention group, 64% (53/83) used ePATH. The linear mixed model showed no significant differences between groups in patient activation [ß -2.32, P .39; CI -7.64-3.00]. Baseline patient activation [ß 0.65, P < .001; CI 0.40-0.91] and depression [ß -0.86, P .03; CI -1.64- -0.07] statistically impacted patient activation scores over one year. CONCLUSIONS: ePATH had no impact on patient activation during long-term prostate cancer rehabilitation. However, patient activation at baseline and depression scores significantly influenced patient activation, underlining the need to assess these aspects in prostate cancer surgery rehabilitation. TRIAL REGISTRATION: ISRCTN Registry ISRCTN18055968, (07/06/2018); https://www.isrctn.com/ISRCTN18055968; International Registered Report Identifier: RR2-10.2196/11625.

Amputation or Reconstruction? Development and Validation of a Patient Decision Aid for Treatment of Severe Lower-Extremity Trauma.

BACKGROUND: Our goal was to develop and validate the Severe Lower-Extremity Trauma decision aid (SLETRA) to help patients make treatment decisions aligned with their values regarding amputation versus reconstruction. METHODS: We recruited 62 adults (41 women) from a foot and ankle practice at a US academic hospital from June to August 2020. We excluded patients who could not read in English and who lacked internet service access. Patients completed an 8-question knowledge test regarding the risks, benefits, and outcomes of treatment options before and after reviewing SLETRA. The survey presented a hypothetical case of severe lower-extremity trauma. Respondents, imagining themselves as patients, indicated whether they would choose amputation or reconstruction. We evaluated knowledge scores (maximum, 8 points); decisional conflict scores (maximum, 400 points, with higher scores indicating greater respondent difficulty in decision making); ratings of factors influencing the decision; and SLETRA helpfulness (maximum, 7 points). Pre- and post-test knowledge scores were compared using paired Student's t-tests; Alpha = 0.05. RESULTS: Mean and standard deviation knowledge scores improved from 5.2 ± 1.6 (pre-test) to 6.7 ± 1.6 (post-test) (p < 0.001). Mean decisional conflict score was 223 ± 16, reflecting moderate difficulty. Factors affecting treatment choice were risk of complications (n = 29), recovery time (n = 27), and future prosthesis use (n = 27). No respondent had difficulty understanding SLETRA. Mean helpfulness score was 5.6 ± 0.16, reflecting considerable benefit. CONCLUSION: The SLETRA decision aid is a helpful, understandable tool that significantly improves patient knowledge regarding treatment options for severe lower-extremity trauma.

A roadmap for empowering cardiovascular disease patients: a 5P-Medicine approach and technological integration.

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles-Predictive, Preventive, Participatory, Personalized, and Precision Medicine-the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases.

Inclusive Design Thinking for the Development of Digital Health Applications: A Methodology Review.

Inclusive Design Thinking (IDT) is an approach that specifically addresses disadvantaged user groups and involves them in the innovation process. In recent years, IDT has emerged as a particularly promising approach for increasing citizen and patient engagement in the development of digital health applications. Although IDT is based on existing frameworks of design thinking and human-centered design approaches, there is still no overview of its methods for digital health solutions. Our aim was to develop such a systematic overview of the methods used, aligned with the design process, and thereby facilitate the practical application of IDT. 44 IDT methods could have been consolidated and assigned to the phases of the IDT process. This work provides the first systematic overview of IDT methods used for Digital Health (DH). Future work could expand on this and, for example, investigate the effectiveness of the methods in more detail.

Chronically ill patients' perspectives on support services and activities of patient organizations.

BACKGROUND: Patient Organizations (POs) are an important support factor in helping chronically ill patients cope with their illness. Patient involvement in the management of their disease helps to achieve the best possible care for the patient, streamline the work of healthcare providers, shape healthcare policy, and even influence the structures of healthcare systems. The perspective of chronically ill patients on the activities and services provided by patient organizations has not been evaluated yet. This study aimed to identify and map the services and activities of all types of non-profit patient organizations from the perspective of chronically ill patients so that they can be integrated as an integral part of the healthcare system. METHODS: Nineteen services and activities of patient organizations were sampled from Israeli patient organizations and scientific literature. These services and activities were evaluated by chronically ill patients in Israel. Patient-Oriented Questionnaires (POQ) were distributed among patients with chronic diseases (N = 1395) using snowball sampling. RESULTS: Exploratory factor analysis (EFA) was performed, followed by confirmatory factor analysis (CFA) for convergent and discriminant validity. Findings showed that twelve services and activities suggested by patient organizations were found to represent chronically ill patients' needs and categorized into three groups: Interpersonal support (five items), patients' rights (four items), and medical information (three items). CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058. CONCLUSIONS: Well-organized patient organizations are an important pillar in reformed healthcare systems. They can serve as the social arm of the healthcare system and as an intermediary between patients and healthcare institutions. We narrowed down twelve services and activities given by patient organizations that were important to chronically ill patients in Israel. patient organizations can utilize patient needs or preferences into clinical practice and influence health policy planning, patient-caregiver relationships, research and even healthcare costs. patient organizations recognition by the healthcare system, and establishment of a national patient council will help to realize these processes.

Patient and public involvement in healthcare: a systematic mapping review of systematic reviews - identification of current research and possible directions for future research.

OBJECTIVES: To provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes and research gaps. DESIGN: Mapping review of systematic reviews. A patient coresearcher (JB) was involved in all stages. A broad search strategy was applied to capture the variation in terminology. DATA SOURCES: MEDLINE, CINAHL and PsycINFO were searched from 1 January 2001 to 5 December 2022. ELIGIBILITY CRITERIA: We included systematic reviews of empirical studies focusing on PPI in the mesolevel and macrolevel of healthcare. DATA EXTRACTION AND SYNTHESIS: Three independent reviewers used standardised methods to screen studies and extract data. Thematic categories were created inductively through iteration. The results were organised in narrative, visual or tabular formats. RESULTS: 4419 identified records were screened. 37 systematic reviews were eligible for inclusion. Most studies were narrative syntheses (N=26). Identified context categories were PPI for healthcare quality improvement (22%), patient safety (8%), community-based initiatives (27%), peer support (16 %) and education of healthcare professionals (27%). A wide range of terms was used to discuss PPI, with community participation being the most common. 28 reviews reported on frameworks, conceptual guidance and/or policy documents. Nine different types of outcomes were identified. The research gap pointed out most frequently is the lack of studies of robust designs that allow for replication and long-term follow-up, followed by studies on cost-effectiveness and resources needed. There is a need for consensus on the use of terminology. CONCLUSIONS: This mapping review sheds light on the evolving landscape of PPI in healthcare. To advance the field, future research should prioritise rigorous study designs, cost-effectiveness assessments and consensus-building efforts to create a more unified and impactful approach for PPI in healthcare.

Assessment of decision-making autonomy in chronic pain patients: a pilot study.

BACKGROUND: Patient decision-making autonomy refers to the patients' ability to freely exert their own choices and make their own decisions, given sufficient resources and information to do so. In pain medicine, it is accepted that appropriate beneficial management aims to propose an individualized treatment plan shared with the patients, as agents, to help them live as autonomously as possible with their pain. However, are patients in chronic pain centers sufficiently autonomous to participate in the therapeutic decisions that concern them? As this question still remains unanswered, a pilot study was set up to that aim. METHODS: Over a 2-month period, first-time patients within a tertiary multidisciplinary pain center underwent a systematic evaluation of their autonomy using the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), considered the benchmark tool for measuring a patient's ability to consent to treatment. Demographic data and pain characteristics of the patients were collected and their respective attending pain physicians were asked to clinically assess their patients' degree of autonomy. Another physician, who had not participated in the initial patient evaluation, subsequently administered the MacCAT-T questionnaire to the same patients. RESULTS: Twenty-seven patients were included during the study period (21 women and 6 men), with an average age of 50 years. The average duration of pain was 8 years. Based on their clinical experience, the 4 different pain physicians in charge of these patients considered that out of 25 assessed patients, 22 of them (89%) had full decision-making capacity, with no deficit in autonomy. According to the MacCAT-T results, only 13 of these 25 patients (48%) had no deficit, while 7 (26%) had a major deficit in autonomy. The only patient characteristic that appeared to be related to autonomy was pain type, specifically nociplastic pain. The average time taken to complete the test was 20 min, and patients were very satisfied with the interview. CONCLUSION: Results from the present pilot study suggest that patients suffering from chronic pain do not appear to be entirely autonomous in their decision to consent to the proposed treatment plan according to the MacCAT-T questionnaire, and physicians seem to find it difficult to properly assess this competence in a clinical setting. Further studies with larger samples are needed to better evaluate this concept to improve the complex management of these patients.

Road to referral success in COPD: Enhancing patient engagement through dedicated conversations about pulmonary rehabilitation programs.

RESEARCH QUESTION: From the perspectives of healthcare professionals (HCPs) and people with chronic obstructive pulmonary disease (COPD) known to tertiary care, what influences successful referrals to a pulmonary rehabilitation program (PRP)? METHODS: This cross-sectional qualitative study was informed by a critical realist perspective. We purposively sampled people with COPD and HCPs who deliver COPD care and used semi-structured interviews and focus groups to explore determinants of a successful referral to a PRP. Interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Data were available on 38 HCPs and 15 people with COPD. We generated three core themes pertaining to successful referrals. The first theme was that HCPs should be mindful of how professional responsibilities (such as their personal value and interest in a PRP, their degree of understanding of PRPs, and the organisational culture the PRPs are embedded within) shape decision-making during a therapeutic interaction. The second theme, there's more to me than my COPD, characterised psychological perceptions that shape a person's readiness to engage in a PRP. The third theme, communication is a two-way street that requires careful navigation, characterised the interpersonal dynamic between HCP and patient, and how dedicated conversations about PRPs can encourage successful referrals. CONCLUSION: Therapeutic interactions that include dedicated conversations about PRPs can foster successful referrals among people with COPD. During these interactions, HCPs should take the time to understand and carefully unpack psychological perceptions whilst imparting value, interest and enthusiasm for PRPs. Doing so can shape patient engagement toward referral success.

Predicting Long-Term Engagement in mHealth Apps: Comparative Study of Engagement Indices.

BACKGROUND: Digital health care apps, including digital therapeutics, have the potential to increase accessibility and improve patient engagement by overcoming the limitations of traditional facility-based medical treatments. However, there are no established tools capable of quantitatively measuring long-term engagement at present. OBJECTIVE: This study aimed to evaluate an existing engagement index (EI) in a commercial health management app for long-term use and compare it with a newly developed EI. METHODS: Participants were recruited from cancer survivors enrolled in a randomized controlled trial that evaluated the impact of mobile health apps on recovery. Of these patients, 240 were included in the study and randomly assigned to the Noom app (Noom Inc). The newly developed EI was compared with the existing EI, and a long-term use analysis was conducted. Furthermore, the new EI was evaluated based on adapted measurements from the Web Matrix Visitor Index, focusing on click depth, recency, and loyalty indices. RESULTS: The newly developed EI model outperformed the existing EI model in terms of predicting EI of a 6- to 9-month period based on the EI of a 3- to 6-month period. The existing model had a mean squared error of 0.096, a root mean squared error of 0.310, and an R2 of 0.053. Meanwhile, the newly developed EI models showed improved performance, with the best one achieving a mean squared error of 0.025, root mean squared error of 0.157, and R2 of 0.610. The existing EI exhibited significant associations: the click depth index (hazard ratio [HR] 0.49, 95% CI 0.29-0.84; P<.001) and loyalty index (HR 0.17, 95% CI 0.09-0.31; P<.001) were significantly associated with improved survival, whereas the recency index exhibited no significant association (HR 1.30, 95% CI 1.70-2.42; P=.41). Among the new EI models, the EI with a menu combination of menus available in the app's free version yielded the most promising result. Furthermore, it exhibited significant associations with the loyalty index (HR 0.32, 95% CI 0.16-0.62; P<.001) and the recency index (HR 0.47, 95% CI 0.30-0.75; P<.001). CONCLUSIONS: The newly developed EI model outperformed the existing model in terms of the prediction of long-term user engagement and compliance in a mobile health app context. We emphasized the importance of log data and suggested avenues for future research to address the subjectivity of the EI and incorporate a broader range of indices for comprehensive evaluation.

"I am there just to get on with it": a qualitative study on the labour of the patient and public involvement workforce.

BACKGROUND: Workers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as the National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders' orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation. METHODS: This was a qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR-funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants. RESULTS: We generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing. CONCLUSIONS: The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, but rather to its displacement and - potentially - its intensification. We suggest that the expectation to "deliver" PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.

A protocol for stakeholder engagement in head and neck cancer pragmatic trials.

Meaningful engagement with stakeholders in research demands intentional approaches. This paper describes the development of a framework to guide stakeholder engagement as research partners in a pragmatic trial proposed to evaluate behavioral interventions for dysphagia in head and neck cancer patients. We highlight the core principles of stakeholder engagement including representation of all perspectives, meaningful participation, respectful partnership with stakeholders, and accountability to stakeholders; and describe how these principles were operationalized to engage relevant stakeholders throughout the course of a large clinical trial.

Percutaneous endoscopic interlaminar discectomy with patients' participation : better postoperative rehabilitation and satisfaction.

OBJECT: Evaluation of the impact of patients' participation on postoperative recovery and satisfaction who underwent the Percutaneous Endoscopic Interlaminar Discectomy(PEID). METHODS: We collected data from sixty-nine patients who underwent PEID surgery at Chuzhou Chinese and Western Medicine Hospital between January 2020 and December 2022. All patients had L5/S1 lumbar disc herniation and met the inclusion and exclusion criteria. The patients were divided into two groups: non-communication group (n = 33) and communication group (n = 36). The division was made based on whether the patients had preoperative surgical video viewing and intraoperative communication. We compared the baseline data, surgical time, VAS score, lumbar JOA score, surgical complications, and patient satisfaction between the two groups. RESULT: The communication group showed better pain control and functional recovery in the early postoperative period. The communication group had better VAS scores on the first day and month after surgery, as well as JOA scores on the first week and month after surgery, with statistically significant differences (P < 0.05). There was no significant difference in hospital stay, VAS score, JOA score, and postoperative complications between the two groups of patients at 3 and 6 months after surgery. The communication group had higher patient satisfaction (P < 0.05). CONCLUSION: Preoperative surgical video viewing and intraoperative communication by PEID patients can alleviate pain, accelerate functional recovery, improve symptoms, and increase patients' satisfaction. We need to do more work to develop this new model.

Motivation for patient engagement in patient safety: a multi-perspective, explorative survey.

BACKGROUND AND OBJECTIVES: Despite increasing calls for more patient engagement in patient safety, limited knowledge remains on what actually motivates key stakeholders in healthcare to promote patient engagement. We therefore set out to survey key stakeholders of patient engagement in patient safety (i.e., patients, healthcare professionals, and managers). We aimed to identify and explore stakeholder's distinct and shared motives for patient engagement. METHODS: A stepwise Delphi method was applied, utilizing semi-structured online interviews for determination of stakeholder motives for patient engagement in patient safety. In a subsequent online survey, statements were evaluated and identified. 34 subject-matter experts from all relevant stakeholder groups completed the online interviews and 33 the online survey. We used content analysis approaches for qualitative and descriptive analyses for quantitative measures. Further, we evaluated the consensus on distinct and shared motives across stakeholder groups. RESULTS: Seven key motives for patient engagement in patient safety were identified. Major motives attributed to patients were: (1) To improve experiences and care outcomes for oneself, as well as (2) for future patients, (3) to express gratitude and appreciation, (4) to cope successfully with treatment-related emotions. A motive shared by patients and professionals was (5) to contribute actively to improved delivery of healthcare. To optimize patient safety, costs, and care processes (6) was shared by professionals and managers. Lastly, (7) to improve patient-provider relationships was jointly shared by all stakeholder groups. For four motives (1, 2, 6, 7) consensus was established. CONCLUSIONS: In order to unlock the full potential of future interventions in patient engagement, a deeper understanding of stakeholder motives is essential. We identified a set of distinct and shared motives for patient engagement across relevant stakeholder groups. Our findings may inform future interventions in patient engagement that take account of the motivational foundations and aspirations of all stakeholders who are key for the success for collaborative patient safety and care improvements. TRIAL REGISTRATION: ID DRKS00031837 (Date May 8, 2023).

Closing the value-based circle in shared decision-making: a digital framework for informing the shared decision-making process through patient reported outcome and experience measures.

Background: The spreading adoption of value-based models of healthcare delivery has incentivized the use of patient-reported outcomes and experience measures (PROMs and PREMs) in clinical practice, with the potential to enrich the decision-making process with patient-reported data. Methods: This perspective article explores PROs and the shared decision-making (SDM) process as components of value-based healthcare. We describe the potential of PROMs and PREMs within the decision-making process and present a digital framework for informing the shared decision-making process using aggregated data from a healthcare system PROMs and PREMs program, including early results from implementation in hospital network in Madrid, Spain. Results: The proposed digital framework incorporates aggregated data from a hospital network PROMs and PREMs program as part of a digital patient decision aid (PDA) for patients with lymphoma. After the first hematologist appointment, participating patients access the PDA to review relevant information about clinical and patient-reported outcomes for each of the possible options, assign a personal order of priority to different outcomes, and then select their preferred course of action. Patients' answers are automatically uploaded to the EHR and discussed with hematologists at the next appointment. After beginning treatment, patients are invited to participate in the network PROMs program; participants' PROMs data are fed back into the PDA, thus "closing the circle" between the decision-making process and patient-reported data collection.During the first 14 months after launching the decision aid in October 2022, of 25 patients diagnosed with follicular lymphoma at the four participating hospitals, 13 patients decided to participate. No significant differences in age or sex were observed between groups. Average SDM Q-9 score for patients filling in the questionnaire (n = 6) was 36.15 of 45 points. Conclusion: Various obstacles toward widespread implementation of SDM exist such as time constraints, lack of motivation, and resistance to change. Support and active engagement from policy makers and healthcare managers is key to overcome hurdles for capturing patient-reported data and carrying out shared decision-making at healthcare system level. Early results of a digital framework for PRO-enriched SDM seem to be beneficial to the decision-making process.

Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research.

BACKGROUND: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs. METHODS: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations. RESULTS: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields. CONCLUSION: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process.

Needs, preferences, and patient participation for a randomized controlled trial on postneoadjuvant complete tumor response: A qualitative study of patients with esophageal cancer.

PURPOSE: For patients with clinical complete response of non-metastatic esophageal cancer (EC) after neoadjuvant chemoradiotherapy (nCRT) or neoadjuvant chemotherapy (nCT), the two treatment options obligate postneoadjuvant surgery as the current standard treatment (surgery on principle) versus active surveillance with surgery as needed only in recurring loco-regional tumor as a possible future alternative or standard exist. Since these treatments are presumably equivalent in terms of overall survival, patient-centered information can encourage the discussion with the treating physician and can make it easier for patients to make trade-offs between the advantages and disadvantages of the treatment alternatives in a highly distressed situation. METHODS: A qualitative prospective cross-sectional study was conducted to create patient-centered information material that is based on patients' preferences, needs, and concerns regarding the two treatment options, and to investigate the potential participation in a consecutive randomized controlled trial (RCT). Therefore, EC patients (N = 11) were asked about their attitudes. RESULTS: Concerns about the surgery and possible postoperative impairments in quality of life were identified as most mentioned negative aspects of surgery on principle, and recurrence and progression fear and the concern that surgery cannot be avoided anyways as most named negative aspects of surgery as needed. In regard to the participation in an RCT, making a contribution to science and the hope that the novel therapy would be superior to the established one were relevant arguments to participate. On the other hand, the lack of a proactive selection of treatment was named an important barrier to participation in an RCT. CONCLUSION: The importance of adapting medical conversations to the patients' lack of expertise and their exceptional cognitive and emotional situation is stressed. Results of this study can be used to improve patient-centered information and the recruitment of patients in RCTs in cancer.

Patient perspectives on adverse event investigations in health care.

BACKGROUND: Over the last decade attention has grown to give patients and next of kin (P/N) more substantial roles in adverse event investigations. Adverse event investigations occur after adverse events that resulted in death or severe injury. Few studies have focused on patient perspectives on their involvement in such investigations. The present study sets out to investigate how P/N and patient representatives (client councils and the Patient Federation Netherlands) view the involvement of P/N in adverse event investigations, particularly whether and why they want to involved, and how they want to shape their involvement. METHODS: The study features qualitative data on three levels: interviews with P/N (personal), focus groups with representatives of client councils (institutional), and an interview with the Patient Federation Netherlands (national). Researchers used inductive, thematic analysis and validated the results through data source triangulation. RESULTS: The initiative taken by the hospitals in this study provided P/N with the space to feel heard and a position as legitimate stakeholder. P/N appreciated the opportunity to choose whether and how they wanted to be involved in the investigation as stakeholders. P/N emphasized the need for hospitals to learn from the investigations, but for them the investigation was also part of a more encompassing relationship. P/N's views showed the inextricable link between the first conversation with the health care professional and the investigation, and the ongoing care after the investigation was finalized. Hence, an adverse event investigation is part of a broader experience when understood from a patient perspective. CONCLUSIONS: An adverse event investigation should be considered as part of an existing relationship between P/N and hospital that starts before the investigation and continues during follow up care. It is crucial for hospitals to take the initiative in the investigation and in the involvement of P/N. P/N motivations for involvement can be understood as driven by agency or communion. Agentic motivations include being an active participant by choice, while communion motivations include the need to be heard.

Patient experience and satisfaction with shared decision-making: A cross-sectional study among outpatients.

OBJECTIVES: This study aimed to investigate how doctor-patient communication, trust in doctors impacted patients' experience and satisfaction in shared decision-making (SDM). METHODS: This study is based on the data from a cross-sectional survey (n = 12,401) conducted in 27 public specialist outpatient clinics in Hong Kong. RESULTS: The multivariable regression models revealed that doctors' better communication skills were associated with lower decision-making involvement (odd ratio, 0.75 [95 % CI, 0.88-0.94], P < .001) but higher satisfaction with involvement (odd ratio, 6.88 [95 % CI, 5.99-7.93], P < .001). Similarly, longer consultation durations were associated with reduced involvement in decision-making (odd ratio, 0.71 [95 % CI, 0.66-0.73], P < .001) but increased satisfaction with involvement (odd ratio, 1.91 [95 % CI, 1.80-2.04], P < .001). Trust in doctors significantly mediated these associations, except for the association between consultation duration and patients' satisfaction with decision-making involvement. CONCLUSION: Doctors' better communication skills and longer consultations might not necessarily increase patient involvement in SDM but correlated with increased satisfaction with involvement. Trust in doctors emerged as a mediator for participation and satisfaction in decision-making. PRACTICE IMPLICATIONS: Clinics should consider patients' preferences and capabilities when tailoring communication strategies about decision-making and optimizing patient satisfaction.

Patient Engagement With and Perceptions of the COVIDA Project, a Volunteer-Led Telemonitoring and Teleorientation Service for COVID-19 Community Management: Mixed Methods Study.

BACKGROUND: During the pandemic in Peru, the COVIDA (Collaboration Network of Volunteer Brigade Members for the Investigation, Detection, and Primary Management of Community Cases Affected by COVID-19) project proposed an innovative way to provide telemonitoring and teleorientation to COVID-19 patients, led by health care student volunteers. However, it has not been described how this interaction is perceived from the patient's perspective and which factors increase their engagement with this service. OBJECTIVE: The aim of this study is to describe the perceptions of patients about COVIDA and identify factors associated with their engagement with this service. METHODS: A mixed methods study was conducted to evaluate perceptions of patients that participated in the COVIDA project. This telehealth intervention organized by the National University of San Marcos was implemented in Peru from August to December 2020. The service involved daily phone calls by volunteer students to monitor registered COVID-19 patients until the completion of the 14th day of the illness or if a warning sign was identified. The volunteers also provided teleorientation to address the patients' needs and concerns. Quantitative analysis was performed to describe the characteristics of the patients and to assess the factors related to their engagement with the service, which was defined by the percentage of participants who completed the follow-up according to their individual schedule. Qualitative analysis through semistructured interviews evaluated the patients' perceptions of the service regarding the aspects of communication, interaction, and technology. RESULTS: Of the 770 patients enrolled in COVIDA, 422 (55.7%) were female; the median age was 39 (IQR 28-52) years. During the monitoring, 380 patients (49.4%) developed symptoms, and 471 (61.2%) showed warning signs of COVID-19. The overall median for engagement was 93% (IQR 35.7%-100%). Among those patients who did not develop warning signs, engagement was associated with the presence of symptoms (OR 3.04, 95% CI 2.22-4.17), a positive COVID-19 test at the start of follow-up (OR 1.97, 95% CI 1.48-2.61), and the presence of comorbidities (OR 1.83, 95% CI 1.29-2.59). Patients reported that the volunteers provided clear and valuable information and emotional support. Communication via phone calls took place smoothly and without interruptions. CONCLUSIONS: COVIDA represents a well-accepted and well-perceived alternative model for student volunteers to provide telemonitoring, teleorientation, and emotional support to patients with COVID-19 in the context of overwhelmed demand for health care services. The deployment of this kind of intervention should be prioritized among patients with symptoms and comorbidities, as they show more engagement with these services.