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Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health, CC BY 4.0 DEED© Jonas Moll, Gunilla Myreteg, Hanife Rexhepi.Correspondence Address: J. Moll; Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Örebro, Nova Building, 4th floor Fakultetsgatan 1, 70182, Sweden; email: jonas.moll@oru.se

Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health, CC BY 4.0 DEED© Jonas Moll, Gunilla Myreteg, Hanife Rexhepi.Correspondence Address: J. Moll; Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Örebro, Nova Building, 4th floor Fakultetsgatan 1, 70182, Sweden; email: jonas.moll@oru.se

Purpose: The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provi

Prostate cancer (PCa) is the most common cancer among men in the Netherlands. Robot Assisted Radical Prostatectomy (RARP) for localized/locally advanced PCa is one of treatment options. However, choosing the right treatment can be challenging for patients. Decision aids, based on standardized clinical study information, are available. These aids are crucial due to the significant impact of treatment side effects on patients’ quality of life (QoL). RARP can lead to short-term complications like vesico-urethral anastomosis leakage and long-term issues such as urinary incontinence (UI) and erectile dysfunction (ED). Patient-reported outcome measures (PROMs) are essential in shared decision-making (SDM) and post-treatment follow-up. PROMs, utilized in clinical studies and patient communication, help manage RARP side effects and identify other potential issues. This thesis investigates PROMs' clinical roles, develops a predictive tool for UI post-RARP based on PROM responses, evaluates the effect of individualized continence predictions on treatment decisions, explores non-surgical factors in erectile function recovery, and assesses patients' sexual satisfaction post-RARP. Section I: PROMs in Clinical Practice Chapter 1 examines the response rates to digital and paper-based PROMs in localized prostate cancer patients undergoing RARP. Digital questionnaires were complemented by paper-based versions for non-responders. Higher response rates were observed for paper-based reminders, especially among older patients, indicating age as a significant predictor of response rates. Chapter 2 compares QoL recovery patterns post-RARP using interview and questionnaire-based assessments. Interviews tended to overestimate functional recovery compared to questionnaires, with continence scores strongly correlating with physical and overall QoL. Chapter 3 contrasts PROMs with clinician-reported outcomes for urinary continence and erectile function post-RARP. Findings revealed significant d

Purpose The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide th

In a changing dementia landscape, there is a need for innovative and sustainable solutions to keep dementia diagnosis and treatment accessible and scalable. The introduction of medication for Alzheimer’s disease underscores the necessity of precision medicine, as these drugs may be beneficial for some patients but certainly not for all. Even for those who are eligible, the medications carry a risk of side effects, further emphasizing the need for shared decision-making and effective communication. All these aspects can be supported by digital tools. However, despite the positive attitudes of end-users, many of these innovations remain unused. Therefore, this thesis aimed to improve the translation of digital tools into daily memory clinic practice by focusing on the end-users (physicians, patients, and care partners). The key findings of this thesis indicate that end-users generally have positive attitudes towards digital tools (Chapters 2, 3, 6). Innovations such as digital cognitive testing and automated MRI quantification show promise for improving the diagnosis of dementia with Lewy bodies (DLB) (Chapters 4, 5) and maintaining accessibility and affordability of dementia diagnosis (Chapter 7). The assessment of the preferences and needs of the end-users led to the identification of several requirements to support the implementation of tools (Chapters 2, 3, 6, 8). These factors are centered around healthcare professionals, who need sufficient knowledge of the tool, time to learn it and become familiar with it, and the assurance of their clinical autonomy. The key considerations regarding the tool itself are ease of use, usefulness, relevance, and validity (Chapters 2, 6). Furthermore, professionals use the tool in a specific human environment, where important factors include the interaction between the patient and the professional, patient preferences, and the ability to tailor the tool accordingly (Chapters 3, 6, 8). Finally, the tool is used in a specific organi

Purpose The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide th

Purpose: The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provi

Purpose The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide th

Purpose: The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provi

Purpose The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide th

Colorectal cancer (CRC) screening in the form of self-sampling enhances participation and early cancer detection. However, CRC screening participation in Sweden is marked by inequality. Moreover, individuals are relatively uninformed about screening procedures, with existing informational channels all exhibiting various limitations. Hence, this project was initiated in collaboration with KI and KTH to develop a digital decision aid for individuals called into CRC screening. This study aims to mark an initial stage of development, with the overarching goal being to improve CRC screening participation rates and support informed decision making aligned with patient values and preferences. Using an approach rooted in the shared decision-making (SDM) model, the study investigates user attitudes and preferences concerning health, digital healthcare services and cancer screening through conducting semi-structured interviews and a thematic analysis. These insights inform user requirements, which are integrated with stakeholder requirements and the current informational landscape to shape the digital decision aid’s information architecture and design. The research identifies various challenges and opportunities for the development of the digital decision aid in a Swedish context, underscoring the importance of adapting the decision aid to user needs and preferences. In subsequent stages of development, the prototype produced by this study should be evaluated through usability testing, and further user research should be conducted to generate more specific user requirements concerning visual and interactional elements.

Purpose The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide th

Colorectal cancer (CRC) screening in the form of self-sampling enhances participation and early cancer detection. However, CRC screening participation in Sweden is marked by inequality. Moreover, individuals are relatively uninformed about screening procedures, with existing informational channels all exhibiting various limitations. Hence, this project was initiated in collaboration with KI and KTH to develop a digital decision aid for individuals called into CRC screening. This study aims to mark an initial stage of development, with the overarching goal being to improve CRC screening participation rates and support informed decision making aligned with patient values and preferences. Using an approach rooted in the shared decision-making (SDM) model, the study investigates user attitudes and preferences concerning health, digital healthcare services and cancer screening through conducting semi-structured interviews and a thematic analysis. These insights inform user requirements, which are integrated with stakeholder requirements and the current informational landscape to shape the digital decision aid’s information architecture and design. The research identifies various challenges and opportunities for the development of the digital decision aid in a Swedish context, underscoring the importance of adapting the decision aid to user needs and preferences. In subsequent stages of development, the prototype produced by this study should be evaluated through usability testing, and further user research should be conducted to generate more specific user requirements concerning visual and interactional elements.

Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health, CC BY 4.0 DEED© Jonas Moll, Gunilla Myreteg, Hanife Rexhepi.Correspondence Address: J. Moll; Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Örebro, Nova Building, 4th floor Fakultetsgatan 1, 70182, Sweden; email: jonas.moll@oru.se

Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health, CC BY 4.0 DEED© Jonas Moll, Gunilla Myreteg, Hanife Rexhepi.Correspondence Address: J. Moll; Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Örebro, Nova Building, 4th floor Fakultetsgatan 1, 70182, Sweden; email: jonas.moll@oru.se

BACKGROUND: The SAfety and FEasibility of standard EVAR outside the instruction for use (SAFE-EVAR) Study was designed to define the attitude of Italian vascular surgeons towards the use of standard endovascular repair (EVAR) for infrarenal abdominal aortic aneurysm (AAA) outside the instruction for use (IFU) through a Delphi consensus endorsed by the Italian Society of Vascular and Endovascular Surgery (Società Italiana di Chirurgia Vascolare ed Endovascolare - SI CVE). METHODS : A questionnaire consisting of 26 statements was developed, validated by an 18-member Advisory Board, and then sent to 600 Italian vascular surgeons. The Delphi process was structured in three subsequent rounds which took place between April and June 2023. In the first two rounds, respondents could indicate one of the following five degrees of agreement: 1) strongly agree; 2) partially agree; 3) neither agree nor disagree; 4) partially disagree; 5) strongly disagree; while in the third round only three different choices were proposed: 1) agree; 2) neither agree nor disagree; 3) disagree. We considered the consensus reached when ≥70% of respondents agreed on one of the options. After the conclusion of each round, a report describing the percentage distribution of the answers was sent to all the participants. RESULTS: Two-hundred-forty-four (40.6%) Italian Vascular Surgeons agreed to participate the first round of the Delphi Consensus; the second and the third rounds of the Delphi collected 230 responders (94.3% of the first-round responders). Four statements (15.4%) reached a consensus in the first rounds. Among the 22 remaining statements, one more consensus (3.8%) was achieved in the second round. Finally, seven more statements (26.9%) reached a consensus in the simplified last round. Globally, a consensus was reached for almost half of the proposed statements (46.1%). CONCLUSIONS: The relatively low consensus rate obtained in this Delphi seems to confirm the discrepancy between Guideline

Background: Sharing mental health notes through patient accessible electronic health records (PAEHRs) is controversial. Many psychiatric organizations and regions in Sweden have resisted the implementation, as clinicians worry about possible harms when patients are reading their notes. Despite the documented benefits of PAEHRs, there is still a lack of knowledge regarding whether patients with mental health issues could reap similar benefits of reading their notes as other patient groups. Objective: The aim of the study is to examine the use, attitudes, and experiences of patients with mental health issues by reading their notes in the PAEHR and, moreover, whether their experiences differ from other patient groups, and if so, how. Methods: A national patient survey was conducted with answers from 2587 patients from different patient groups. In total, 504 respondents (19.5%) indicated that they experienced a mental health disease. Answers from this patient group were compared to the answers from all other respondents. Survey questions related to attitudes, information usage, and effects on contacts with care were selected for analysis. Mann-Whitney U tests were used to detect groupwise differences. Results: Patients with mental health issues use PAEHRs for checking that they have received the right care (mean_mental health 2.83, SD_mental health 1.39; mean_others 2.62, SD_others 1.37; P=.002) or suspected inaccuracies (mean_mental health 2.55, SD_mental health 1.34; mean_others 2.31, SD_others 1.30; P=.001), blocking access for professionals in other specialties (mean_mental health 3.43, SD_mental health 1.46; mean_others 3.04, SD_others 1.42; P<.001), and checking which care professionals have accessed their record (mean_mental health 4.28, SD_mental health 1.14; mean_others 4.05, SD_others 1.25; P<.001) to a significantly higher degree than other patients. On the other hand, the results show that a significantly lower proportion of patients with mental health, CC BY 4.0 DEED© Jonas Moll, Gunilla Myreteg, Hanife Rexhepi.Correspondence Address: J. Moll; Centre for Empirical Research on Information Systems, Örebro University School of Business, Örebro University, Örebro, Nova Building, 4th floor Fakultetsgatan 1, 70182, Sweden; email: jonas.moll@oru.se

PURPOSE: To elucidate existing decision aids (DAs) in supporting cancer survivors decisions to engage in cancer survivorship care services after primary treatment. Secondary objectives are to assess the DA acceptability, impact of DAs, and implementation barriers. METHODS: Databases (PubMed, Embase, PsycINFO, CINAHL) were searched to collect publications from inception through September 2021. Studies describing the development or evaluation of DAs used for survivorship care services after primary cancer treatment were included. Article selection and critical appraisal were conducted independently by two authors. RESULTS: We included 16 studies that described 13 DAs and addressed multiple survivorship care domains: prevention of recurrence/new cancers in Hodgkin lymphoma survivors and breast cancer gene mutation carriers, family building options, health insurance plans, health promotion (substance use behavior, cardiovascular disease risk reduction), advanced care planning, and post-treatment follow-up intensity. The electronic format was used to design most DAs for self-administration. The content presentation covered decisional context, options, and value clarification exercises. DAs were acceptable and associated with higher knowledge but presented inconclusive decisional outcomes. Implementation barriers included lack of design features for connectivity to care, low self-efficacy, and low perceived DA usefulness among healthcare professionals. Other survivor characteristics included age, literacy, preferred timing, and setting. CONCLUSIONS: A diverse range of DAs exists in survivorship care services engagement with favorable knowledge outcomes. Future work should clarify the impact of DAs on decisional outcomes. IMPLICATIONS FOR CANCER SURVIVORS: DA characterization and suggestions for prospective developers could enhance support for cancer survivors encountering complex decisions throughout the survivorship continuum.

PURPOSE: The aim of this study was to explore patients' experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals' preferences. There is a knowledge gap of successful approaches to support patients' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. METHOD: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. FINDINGS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors' choice, and feeling selected for treatment. CONCLUSION: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provi, Open access funding provided by Kristianstad University.

Effective implementation of cancer screening programs can reduce disease-specific incidence and mortality. Screening is currently recommended for breast, cervical, colorectal and lung cancer. However, initial and repeat adherence to screening tests in accordance with current guidelines is sub-optimal, with the lowest rates observed in historically underserved groups. If used in concert with recommended cancer screening tests, new biospecimen-based multi-cancer early detection (MCED) tests could help to identify more cancers that may be amendable to effective treatment. Clinical trials designed to assess the safety and efficacy of MCED tests to assess their potential for reducing cancer mortality are needed and many are underway. In the conduct of MCED test trials, it is crucial that participant recruitment efforts successfully engage participants from diverse populations experiencing cancer disparities. Strategic partnerships involving health systems, clinical practices, and communities can increase the reach of MCED trial recruitment efforts among populations experiencing disparities. This goal can be achieved by developing health system-based learning communities that build understanding of and trust in biomedical research; and by applying innovative methods for identifying eligible trial patients, educating potential participants about research trials, and engaging eligible individuals in shared decision making (SDM) about trial participation. This article describes how a developing consortium of health systems has used this approach to encourage the uptake of cancer screening in a wide range of populations and how such a strategy can facilitate the enrollment of persons from diverse patient and community populations in MCED trials.

Objective Based on the principle of the autonomy of the patient, shared decision-making (SDM) is the ideal approach in clinical encounters. In SDM, patients and healthcare professionals (HCPs) share knowledge and power when faced with the task of making decisions. However, patients are often not involved in the decision-making process. In this study, we explore medication decision-making during hospitalization and how power in the specific patient—HCP relationship is articulated, as analysed by Foucauldian theory. Methods A qualitative case study, comprising observations of patient-HCP encounters at an internal medicines ward at a university hospital in Norway, followed by semi-structured interviews. The narratives (n = 4 patients) were selected from a larger study (n = 15 patients). The rationale behind the choice of these patients was to include diverse and rich accounts. The four patients in their 40s–70s were included close to the day of presumed discharge. Results The narratives provide an insight into the patients as persons, their perspectives, including what mattered to them during their hospitalization, especially in relation to medications. Overall, SDM was not observed in this study. Even though all the participants actively tried to keep their autonomous capacity and to resist the HCPs’ use of power, they were not able to change the established dynamics. Moreover, they were not allowed an equal voice to those of HCPs and thus not to escape the system’s objectification and subjectification of them. Conclusion There is a need for HCPs to get more familiarized with SDM. The healthcare system and the individual HCP need to make more room for dialogue with the patients about their preferences. A part of this is also how health care systems are structured and scheduled, thus, it is important to empower patients and HCPs alike.

Objective Based on the principle of the autonomy of the patient, shared decision-making (SDM) is the ideal approach in clinical encounters. In SDM, patients and healthcare professionals (HCPs) share knowledge and power when faced with the task of making decisions. However, patients are often not involved in the decision-making process. In this study, we explore medication decision-making during hospitalization and how power in the specific patient—HCP relationship is articulated, as analysed by Foucauldian theory. Methods A qualitative case study, comprising observations of patient-HCP encounters at an internal medicines ward at a university hospital in Norway, followed by semi-structured interviews. The narratives (n = 4 patients) were selected from a larger study (n = 15 patients). The rationale behind the choice of these patients was to include diverse and rich accounts. The four patients in their 40s–70s were included close to the day of presumed discharge. Results The narratives provide an insight into the patients as persons, their perspectives, including what mattered to them during their hospitalization, especially in relation to medications. Overall, SDM was not observed in this study. Even though all the participants actively tried to keep their autonomous capacity and to resist the HCPs’ use of power, they were not able to change the established dynamics. Moreover, they were not allowed an equal voice to those of HCPs and thus not to escape the system’s objectification and subjectification of them. Conclusion There is a need for HCPs to get more familiarized with SDM. The healthcare system and the individual HCP need to make more room for dialogue with the patients about their preferences. A part of this is also how health care systems are structured and scheduled, thus, it is important to empower patients and HCPs alike.

Patientdelaktighet är ett begrepp med flera dimensioner, vilket gör det svårdefinierat. Idag är det en lagstadgad rättighet att patienten ska få möjlighet att vara delaktig i sin vård. Det innebär att patienterna har en självklar plats i vården, en plats som medskapare till sin vård. Sjuksköterskan har ansvar att ge patienten möjligheter för att bli delaktig, genom att arbeta personcentrerat där patienten och sjuksköterskan samarbetar i ett partnerskap. Partnerskapet ska genomsyras av ömsesidig kommunikation, där båda parterna bidrar. Det är viktigt att sjuksköterskan tar del av patientens livsvärld och ser varje patient som en unik individ. Forskning visar att det finns barriärer för delaktighet. Dessa barriärer kan bero på brister i kommunikationen, avdelningsspecifika hinder och föråldrade hierarkiska strukturer i sjukvården som lever kvar. Utifrån dessa barriärer och kunskapen om hur det borde arbetas med delaktighet är frågan hur patienterna upplever delaktighet när de blir sjuka. Syftet med denna kandidatuppsats är att belysa patienternas upplevelse av delaktighet. Litteraturöversikten är utformad för att ge en bredare översikt och är därför baserad på både kvantitativ och kvalitativ forskning. Resultatet visar att patienterna är nöjda när de deltar i vården på en önskad nivå, genom ett partnerskap med ömsesidig kommunikation och där de blir sedda. Det visar också att patienterna upplever hinder för att känna sig delaktiga. De upplever en maktobalans samt kommunikationsbrister. Det här visar på vikten av ett partnerskap mellan patient och sjuksköterska, där delaktighet skapas., Patient participation is a concept with several dimensions, which makes it hard to define. Today patients have a legal right to have the ability to participate in their own healthcare. This means that the patients have a natural place in healthcare, as co-creators of their care. The nurse has a responsibility to give the patient the opportunity to participate by adopting a person centred approach where the patient and the nurse cooperates in a partnership. The partnership is characterized by mutual communication where both parties contribute. The nurse needs to take part of the patient’s lifeworld and see every patient as a unique individual. Research shows that there are hindrances for participation. The hindrances may be a result of a lack of communication, ward specific barriers and outdated hierarchical structures that still exists. With these hindrances and the knowledge about how participation should be incorporated, the question is how the patients experience participation when they become ill. The aim of this bachelor’s thesis is to illustrate the patients experiences of participation. This literature review is designed to give a wide overview and is therefore based on both quantitative and qualitative research. The results show that the patients are satisfied when they participate in care at a desired level, through a partnership with mutual communication and where they are seen. It also shows that the patients experience hindrances to the feeling of being a participant in their care. They experience a power imbalance as well as a lack of communication. This shows the importance of a partnership between the patient and the nurse, where participation is created.

Objective Based on the principle of the autonomy of the patient, shared decision-making (SDM) is the ideal approach in clinical encounters. In SDM, patients and healthcare professionals (HCPs) share knowledge and power when faced with the task of making decisions. However, patients are often not involved in the decision-making process. In this study, we explore medication decision-making during hospitalization and how power in the specific patient—HCP relationship is articulated, as analysed by Foucauldian theory. Methods A qualitative case study, comprising observations of patient-HCP encounters at an internal medicines ward at a university hospital in Norway, followed by semi-structured interviews. The narratives (n = 4 patients) were selected from a larger study (n = 15 patients). The rationale behind the choice of these patients was to include diverse and rich accounts. The four patients in their 40s–70s were included close to the day of presumed discharge. Results The narratives provide an insight into the patients as persons, their perspectives, including what mattered to them during their hospitalization, especially in relation to medications. Overall, SDM was not observed in this study. Even though all the participants actively tried to keep their autonomous capacity and to resist the HCPs’ use of power, they were not able to change the established dynamics. Moreover, they were not allowed an equal voice to those of HCPs and thus not to escape the system’s objectification and subjectification of them. Conclusion There is a need for HCPs to get more familiarized with SDM. The healthcare system and the individual HCP need to make more room for dialogue with the patients about their preferences. A part of this is also how health care systems are structured and scheduled, thus, it is important to empower patients and HCPs alike.

Children with life-limiting conditions are anticipated to have episodes of clinical deterioration in their health. These episodes of deterioration can be significant and may result in the child’s death. During these episodes, decisions about whether to embark on treatments designed to prolong life arise. These treatments involve intensive care therapies, such as intubation and mechanical ventilation, and resuscitative measures. Decision making about these treatments for children with life-limiting conditions commonly occurs between the child’s paediatrician and their parents. This is because the child often lacks developmental capacity to participate in decision making for themselves. Making decisions about life-prolonging treatments, otherwise known as end-of-life decision making, is often viewed with significant trepidation by paediatricians because of the gravity and emotional nature of these decisions. Little is known about how these decisions are made in practice. Despite this gap in knowledge, consensus guidelines in middle- to high-income countries recommend the practice of shared decision making and advance care planning. Shared decision making and advance care planning are concepts that emerge in the care of a decisionally competent adult patient, to preserve and respect their autonomy in decision making. These concepts are poorly understood in the paediatric context where decisions are being made for the child rather than with the child. This thesis explores how paediatricians approach end-of-life decision making for children with life-limiting conditions. This exploration adopts an interpretivist approach which that assumes that a paediatrician’s experience of end-of-life decision making will shape their practice. To achieve this, this thesis draws on two qualitative studies involving semi-structured interviews. The first involves paediatricians primed by a paper-based vignette; the second involves paediatricians and parent-actors primed by a clinical sim

Patientdelaktighet är ett begrepp med flera dimensioner, vilket gör det svårdefinierat. Idag är det en lagstadgad rättighet att patienten ska få möjlighet att vara delaktig i sin vård. Det innebär att patienterna har en självklar plats i vården, en plats som medskapare till sin vård. Sjuksköterskan har ansvar att ge patienten möjligheter för att bli delaktig, genom att arbeta personcentrerat där patienten och sjuksköterskan samarbetar i ett partnerskap. Partnerskapet ska genomsyras av ömsesidig kommunikation, där båda parterna bidrar. Det är viktigt att sjuksköterskan tar del av patientens livsvärld och ser varje patient som en unik individ. Forskning visar att det finns barriärer för delaktighet. Dessa barriärer kan bero på brister i kommunikationen, avdelningsspecifika hinder och föråldrade hierarkiska strukturer i sjukvården som lever kvar. Utifrån dessa barriärer och kunskapen om hur det borde arbetas med delaktighet är frågan hur patienterna upplever delaktighet när de blir sjuka. Syftet med denna kandidatuppsats är att belysa patienternas upplevelse av delaktighet. Litteraturöversikten är utformad för att ge en bredare översikt och är därför baserad på både kvantitativ och kvalitativ forskning. Resultatet visar att patienterna är nöjda när de deltar i vården på en önskad nivå, genom ett partnerskap med ömsesidig kommunikation och där de blir sedda. Det visar också att patienterna upplever hinder för att känna sig delaktiga. De upplever en maktobalans samt kommunikationsbrister. Det här visar på vikten av ett partnerskap mellan patient och sjuksköterska, där delaktighet skapas., Patient participation is a concept with several dimensions, which makes it hard to define. Today patients have a legal right to have the ability to participate in their own healthcare. This means that the patients have a natural place in healthcare, as co-creators of their care. The nurse has a responsibility to give the patient the opportunity to participate by adopting a person centred approach where the patient and the nurse cooperates in a partnership. The partnership is characterized by mutual communication where both parties contribute. The nurse needs to take part of the patient’s lifeworld and see every patient as a unique individual. Research shows that there are hindrances for participation. The hindrances may be a result of a lack of communication, ward specific barriers and outdated hierarchical structures that still exists. With these hindrances and the knowledge about how participation should be incorporated, the question is how the patients experience participation when they become ill. The aim of this bachelor’s thesis is to illustrate the patients experiences of participation. This literature review is designed to give a wide overview and is therefore based on both quantitative and qualitative research. The results show that the patients are satisfied when they participate in care at a desired level, through a partnership with mutual communication and where they are seen. It also shows that the patients experience hindrances to the feeling of being a participant in their care. They experience a power imbalance as well as a lack of communication. This shows the importance of a partnership between the patient and the nurse, where participation is created.

Recent years have seen increased emphasis on person-centring and user involvement in healthcare delivery and social services. In Sweden, the rights of users to participate in and influence care planning and services are stipulated in the Social Services Act, the Health Care Act and the Patient Law. Shared decision making (SDM) is presented as a supportive collaboration between users and staff, drawing on users’ preferences and values as well as the best available evidence to discuss options and reach a consensus on care decisions. However, studies on the implementation of SDM in somatic care illustrate challenges, such as staff trying to persuade users to agree to a particular option rather than offering opportunities to discuss various alternatives. The Swedish National Board of Health and Welfare recommend that SDM should be offered in social services support in relation to certain groups. However, the imperative that ‘SDM should be offered in the social services’ raises questions; in addition to the question of how SDM should be understood, we need to account for why SDM should be offered, who should offer SDM, when it should be offered, to whom and regarding which decisions. The questions concern justification as well as clarifications. The aim of this article is threefold: to discuss SDM and its components; to deliberate upon what SDM may imply to the social services and finally, to suggest some preconditions that should be present for an implementation of SDM.

Introduction: The aim of this study was to evaluate intraocular lens (IOL) tilt, IOL-induced astigmatism (IIA), refractive change, and impact of capsular fibrosis on IOL position after scleral fixation of dislocated IOL using two methods: ab externo scleral suture loop fixation (group A) and a modification, embracing the continuous curvilinear capsulorhexis (group B). Methods: In this prospective randomized clinical trial conducted at St. Erik Eye Hospital, 117 patients with dislocated IOL were randomized to group A (n = 61) or B (n = 56). Patients with ordinary pseudophakia (n = 60) served as controls. IOL tilt was measured three-dimensionally with anterior segment optical coherence tomography (AS-OCT). Results: The median IOL tilt was similar with both methods (A: 7.8°; B: 8.3°; p = 0.51) but higher than in ordinary pseudophakia (5.4°; p < 0.001). Both groups showed a myopic shift, p < 0.001. In cases without capsular fibrosis, the median IOL tilt was 15.5° in group A (n = 7) and 7.0° in group B (n = 5), p = 0.19. For each degree of IOL tilt, IIA increased by 0.075 D (p < 0.001). IOL position could be measured with AS-OCT in all patients given that the IOL was visible in the pupil. Conclusion: After IOL fixation surgery, IOL tilt is higher than in normal pseudophakia. A study involving more patients without capsular fibrosis could clarify whether IOL position is better with method B in this subgroup. IAA is low, but myopic shift is common. AS-OCT is useful for IOL tilt assessment after IOL fixation surgery.

Purpose: To develop an in-depth understanding of older individuals’ attitudes and perceptions of medication management and care after discharge from hospital-to-home. Patients and Methods: A qualitative study using semi-structured interviews with selected individuals 75 years and older, discharged from hospital within the last 6–12 months, living at home, and managing their own medications. Face-to-face interviews were audio-recorded, transcribed and analyzed with thematic analysis. Results: Among the 15 respondents, mean age was 83.5 years (range 75–95 years), 67% were women, and 60% lived alone. The majority (80%) managed their medications with a pill organizer or directly from the pill boxes, while 20% used dose dispensed medications. The analysis of the data led to six themes: Medication adherence, Personal responsibility, Transitions of care, Beliefs about medications, Participation (experience of participation, willingness to participate) and Accessibility (easier to reach hospital than primary care, navigating in the care system, continuity, personal chemistry). Conclusion: The included respondents who were older individuals, living at home and managing their own medications, expressed that they were medical adherent and self-managing. Two important aspects which were seen were difficulties to reach primary care on their own initiative and the lack of continuity with the same physician over a longer period of time.

Aim: We aimed to develop a decision aid (DA) for individuals with anxiety disorders who consider tapering benzodiazepine (BZD) anxiolytics, and if tapering, tapering BZD anxiolytics with or without cognitive behavioral therapy (CBT) for anxiety. We also assessed its acceptability among stakeholders. Methods: First, we conducted a literature review regarding anxiety disorders to determine treatment options. We cited the results of the systematic review and meta-analysis, which we conducted previously, to describe the related outcomes of two options: tapering BZD anxiolytics with CBT and tapering BZD anxiolytics without CBT. Second, we developed a DA prototype in accordance with the International Patient Decision Aid Standards. We carried out a mixed methods survey to assess the acceptability among stakeholders including those with anxiety disorders and healthcare providers. Results: Our DA provided information such as explanation of anxiety disorders, options of tapering or not tapering BZD anxiolytics (if tapering, the options of tapering BZD anxiolytics with or without CBT) for anxiety disorder, benefits and risks of each option, and a worksheet for value clarification. For patients (n = 21), the DA appeared to be acceptable language (86%), adequate information (81%), and well-balanced presentation (86%). The developed DA was also acceptable for healthcare providers (n = 10). Conclusion: We successfully created a DA for individuals with anxiety disorders who consider tapering BZD anxiolytics, which was acceptable for both patients and healthcare providers. Our DA was designed to assist patients and healthcare providers to involve decision-making about whether to taper BZD anxiolytics or not.

Introduction: The aim of this study was to evaluate intraocular lens (IOL) tilt, IOL-induced astigmatism (IIA), refractive change, and impact of capsular fibrosis on IOL position after scleral fixation of dislocated IOL using two methods: ab externo scleral suture loop fixation (group A) and a modification, embracing the continuous curvilinear capsulorhexis (group B). Methods: In this prospective randomized clinical trial conducted at St. Erik Eye Hospital, 117 patients with dislocated IOL were randomized to group A (n = 61) or B (n = 56). Patients with ordinary pseudophakia (n = 60) served as controls. IOL tilt was measured three-dimensionally with anterior segment optical coherence tomography (AS-OCT). Results: The median IOL tilt was similar with both methods (A: 7.8°; B: 8.3°; p = 0.51) but higher than in ordinary pseudophakia (5.4°; p < 0.001). Both groups showed a myopic shift, p < 0.001. In cases without capsular fibrosis, the median IOL tilt was 15.5° in group A (n = 7) and 7.0° in group B (n = 5), p = 0.19. For each degree of IOL tilt, IIA increased by 0.075 D (p < 0.001). IOL position could be measured with AS-OCT in all patients given that the IOL was visible in the pupil. Conclusion: After IOL fixation surgery, IOL tilt is higher than in normal pseudophakia. A study involving more patients without capsular fibrosis could clarify whether IOL position is better with method B in this subgroup. IAA is low, but myopic shift is common. AS-OCT is useful for IOL tilt assessment after IOL fixation surgery.

Purpose: To develop an in-depth understanding of older individuals’ attitudes and perceptions of medication management and care after discharge from hospital-to-home. Patients and Methods: A qualitative study using semi-structured interviews with selected individuals 75 years and older, discharged from hospital within the last 6–12 months, living at home, and managing their own medications. Face-to-face interviews were audio-recorded, transcribed and analyzed with thematic analysis. Results: Among the 15 respondents, mean age was 83.5 years (range 75–95 years), 67% were women, and 60% lived alone. The majority (80%) managed their medications with a pill organizer or directly from the pill boxes, while 20% used dose dispensed medications. The analysis of the data led to six themes: Medication adherence, Personal responsibility, Transitions of care, Beliefs about medications, Participation (experience of participation, willingness to participate) and Accessibility (easier to reach hospital than primary care, navigating in the care system, continuity, personal chemistry). Conclusion: The included respondents who were older individuals, living at home and managing their own medications, expressed that they were medical adherent and self-managing. Two important aspects which were seen were difficulties to reach primary care on their own initiative and the lack of continuity with the same physician over a longer period of time.

Introduction: The aim of this study was to evaluate intraocular lens (IOL) tilt, IOL-induced astigmatism (IIA), refractive change, and impact of capsular fibrosis on IOL position after scleral fixation of dislocated IOL using two methods: ab externo scleral suture loop fixation (group A) and a modification, embracing the continuous curvilinear capsulorhexis (group B). Methods: In this prospective randomized clinical trial conducted at St. Erik Eye Hospital, 117 patients with dislocated IOL were randomized to group A (n = 61) or B (n = 56). Patients with ordinary pseudophakia (n = 60) served as controls. IOL tilt was measured three-dimensionally with anterior segment optical coherence tomography (AS-OCT). Results: The median IOL tilt was similar with both methods (A: 7.8°; B: 8.3°; p = 0.51) but higher than in ordinary pseudophakia (5.4°; p < 0.001). Both groups showed a myopic shift, p < 0.001. In cases without capsular fibrosis, the median IOL tilt was 15.5° in group A (n = 7) and 7.0° in group B (n = 5), p = 0.19. For each degree of IOL tilt, IIA increased by 0.075 D (p < 0.001). IOL position could be measured with AS-OCT in all patients given that the IOL was visible in the pupil. Conclusion: After IOL fixation surgery, IOL tilt is higher than in normal pseudophakia. A study involving more patients without capsular fibrosis could clarify whether IOL position is better with method B in this subgroup. IAA is low, but myopic shift is common. AS-OCT is useful for IOL tilt assessment after IOL fixation surgery.

Purpose: To develop an in-depth understanding of older individuals’ attitudes and perceptions of medication management and care after discharge from hospital-to-home. Patients and Methods: A qualitative study using semi-structured interviews with selected individuals 75 years and older, discharged from hospital within the last 6–12 months, living at home, and managing their own medications. Face-to-face interviews were audio-recorded, transcribed and analyzed with thematic analysis. Results: Among the 15 respondents, mean age was 83.5 years (range 75–95 years), 67% were women, and 60% lived alone. The majority (80%) managed their medications with a pill organizer or directly from the pill boxes, while 20% used dose dispensed medications. The analysis of the data led to six themes: Medication adherence, Personal responsibility, Transitions of care, Beliefs about medications, Participation (experience of participation, willingness to participate) and Accessibility (easier to reach hospital than primary care, navigating in the care system, continuity, personal chemistry). Conclusion: The included respondents who were older individuals, living at home and managing their own medications, expressed that they were medical adherent and self-managing. Two important aspects which were seen were difficulties to reach primary care on their own initiative and the lack of continuity with the same physician over a longer period of time.

BackgroundLiveborn infants with non-mosaic trisomy 22 are rarely described in the medical literature. Reported lifespan of these patients ranges from minutes to 3 years, with the absence of cardiac anomalies associated with longer-term survival. The landscape for offering cardiac surgery to patients with rare autosomal trisomies is currently evolving, as has been demonstrated recently in trisomies 13 and 18. However, limited available data on patients with rare autosomal trisomies provides a significant challenge in perinatal counseling, especially when there are options for surgical intervention.Case presentationIn this case report, we describe an infant born at term with prenatally diagnosed apparently non-mosaic trisomy 22 and multiple cardiac anomalies, including a double outlet right ventricle, hypoplastic aortic valve and severe aortic arch hypoplasia, who underwent cardiac surgery. The decisions made by her family lending to her progress and survival to this day were made with a focus on the shared decision making model and support in the prenatal and perinatal period. We also review the published data on survival and quality of life after cardiac surgery in infants with rare trisomies.ConclusionsThis patient is the only known case of apparently non-mosaic trisomy 22 in the literature who has undergone cardiac surgery with significant survival benefit. This case highlights the impact of using a shared decision making model when there is prognostic uncertainty.

Background: Although long-term use of benzodiazepines and z-drugs (BZDs) is not recommended, little is known about the stakeholders’ perceptions. This study aimed to assess and compare the perceptions of BZD use and decision making regarding its discontinuation between psychiatric outpatients and psychiatrists. Methods: A cross-sectional survey was conducted. Results: Of 104 outpatients, 92% were taking hypnotics and 96% were taking anxiolytics for a year, while 49% were willing to taper hypnotic/anxiolytics within a year of starting. Most psychiatrists felt that “patient and psychiatrist make the decision together on an equal basis” compared to patients (p < 0.001), while more patients felt that “the decision is (was) made considering the psychiatrists’ opinion” compared to psychiatrists (p < 0.001). Of 543 psychiatrists, 79% reported “patients were not willing to discontinue hypnotic/anxiolytic” whereas a certain number of patients conveyed “psychiatrists did not explain in enough detail about hypnotic/anxiolytic discontinuation such as procedure (18.3%), timing (19.2%), and appropriate condition (14.4%)”. Conclusion: The results suggest that the majority of psychiatric outpatients were taking hypnotic/anxiolytics for a long time against their will. There might be a difference in perceptions toward hypnotic/anxiolytic use and decision making for its discontinuation between psychiatric outpatients and psychiatrists. Further research is necessary to fill this gap.

Objective Based on the principle of the autonomy of the patient, shared decision-making (SDM) is the ideal approach in clinical encounters. In SDM, patients and healthcare professionals (HCPs) share knowledge and power when faced with the task of making decisions. However, patients are often not involved in the decision-making process. In this study, we explore medication decision-making during hospitalization and how power in the specific patient—HCP relationship is articulated, as analysed by Foucauldian theory. Methods A qualitative case study, comprising observations of patient-HCP encounters at an internal medicines ward at a university hospital in Norway, followed by semi-structured interviews. The narratives (n = 4 patients) were selected from a larger study (n = 15 patients). The rationale behind the choice of these patients was to include diverse and rich accounts. The four patients in their 40s–70s were included close to the day of presumed discharge. Results The narratives provide an insight into the patients as persons, their perspectives, including what mattered to them during their hospitalization, especially in relation to medications. Overall, SDM was not observed in this study. Even though all the participants actively tried to keep their autonomous capacity and to resist the HCPs’ use of power, they were not able to change the established dynamics. Moreover, they were not allowed an equal voice to those of HCPs and thus not to escape the system’s objectification and subjectification of them. Conclusion There is a need for HCPs to get more familiarized with SDM. The healthcare system and the individual HCP need to make more room for dialogue with the patients about their preferences. A part of this is also how health care systems are structured and scheduled, thus, it is important to empower patients and HCPs alike.

Background Health care has evolved to support the involvement of individuals in decision making by, for example, using mobile apps and wearables that may help empower people to actively participate in their treatment and health monitoring. While the term “participatory health informatics” (PHI) has emerged in literature to describe these activities, along with the use of social media for health purposes, the scope of the research field of PHI is not yet well defined. Objective This article proposes a preliminary definition of PHI and defines the scope of the field. Methods We used an adapted Delphi study design to gain consensus from participants on a definition developed from a previous review of literature. From the literature we derived a set of attributes describing PHI as comprising 18 characteristics, 14 aims, and 4 relations. We invited researchers, health professionals, and health informaticians to score these characteristics and aims of PHI and their relations to other fields over three survey rounds. In the first round participants were able to offer additional attributes for voting. Results The first round had 44 participants, with 28 participants participating in all three rounds. These 28 participants were gender-balanced and comprised participants from industry, academia, and health sectors from all continents. Consensus was reached on 16 characteristics, 9 aims, and 6 related fields. Discussion The consensus reached on attributes of PHI describe PHI as a multidisciplinary field that uses information technology and delivers tools with a focus on individual-centered care. It studies various effects of the use of such tools and technology. Its aims address the individuals in the role of patients, but also the health of a society as a whole. There are relationships to the fields of health informatics, digital health, medical informatics, and consumer health informatics. Conclusion We have proposed a preliminary definition, aims, and relationships of PHI b

BACKGROUND: Gestational diabetes mellitus (GDM) is a risk factor for the development of type 2 diabetes. Metformin and lifestyle change through a Diabetes Prevention Program (DPP) are equally effective in preventing diabetes in patients with a GDM history, so women can choose a strategy based on their preferences. This study aims to test whether shared decision making (SDM) can help women with a history of GDM increase adoption of evidence-based strategies and lose weight to lower their risk of incident diabetes in real-world settings. METHODS: This pragmatic randomized controlled trial (RCT) will test the effectiveness of SDM for diabetes prevention among 310 overweight/obese women with a history of GDM and prediabetes from two large health care systems (n = 155 from UCLA Health and n = 155 from Intermountain Healthcare). The primary outcome is the proportion of participants who lose ≥5% body weight at 12 months. Secondary outcomes include uptake of DPP and/or metformin and other patient-reported outcomes such as patient activation and health-related quality of life. Rates of GDM in a subsequent pregnancy will be an exploratory outcome. A descriptive analysis of costs related to SDM implementation will also be conducted. CONCLUSION: This is the first RCT to examine the effectiveness of SDM on weight loss, lifestyle change and/or metformin use, and other patient-reported outcomes in participants with a GDM history at risk of developing diabetes. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03766256. Registered on 6 December 2018.

Background: Although long-term use of benzodiazepines and z-drugs (BZDs) is not recommended, little is known about the stakeholders’ perceptions. This study aimed to assess and compare the perceptions of BZD use and decision making regarding its discontinuation between psychiatric outpatients and psychiatrists. Methods: A cross-sectional survey was conducted. Results: Of 104 outpatients, 92% were taking hypnotics and 96% were taking anxiolytics for a year, while 49% were willing to taper hypnotic/anxiolytics within a year of starting. Most psychiatrists felt that “patient and psychiatrist make the decision together on an equal basis” compared to patients (p < 0.001), while more patients felt that “the decision is (was) made considering the psychiatrists’ opinion” compared to psychiatrists (p < 0.001). Of 543 psychiatrists, 79% reported “patients were not willing to discontinue hypnotic/anxiolytic” whereas a certain number of patients conveyed “psychiatrists did not explain in enough detail about hypnotic/anxiolytic discontinuation such as procedure (18.3%), timing (19.2%), and appropriate condition (14.4%)”. Conclusion: The results suggest that the majority of psychiatric outpatients were taking hypnotic/anxiolytics for a long time against their will. There might be a difference in perceptions toward hypnotic/anxiolytic use and decision making for its discontinuation between psychiatric outpatients and psychiatrists. Further research is necessary to fill this gap.

Aim: We aimed to develop a decision aid (DA) for individuals with anxiety disorders who consider tapering benzodiazepine (BZD) anxiolytics, and if tapering, tapering BZD anxiolytics with or without cognitive behavioral therapy (CBT) for anxiety. We also assessed its acceptability among stakeholders. Methods: First, we conducted a literature review regarding anxiety disorders to determine treatment options. We cited the results of the systematic review and meta-analysis, which we conducted previously, to describe the related outcomes of two options: tapering BZD anxiolytics with CBT and tapering BZD anxiolytics without CBT. Second, we developed a DA prototype in accordance with the International Patient Decision Aid Standards. We carried out a mixed methods survey to assess the acceptability among stakeholders including those with anxiety disorders and healthcare providers. Results: Our DA provided information such as explanation of anxiety disorders, options of tapering or not tapering BZD anxiolytics (if tapering, the options of tapering BZD anxiolytics with or without CBT) for anxiety disorder, benefits and risks of each option, and a worksheet for value clarification. For patients (n = 21), the DA appeared to be acceptable language (86%), adequate information (81%), and well-balanced presentation (86%). The developed DA was also acceptable for healthcare providers (n = 10). Conclusion: We successfully created a DA for individuals with anxiety disorders who consider tapering BZD anxiolytics, which was acceptable for both patients and healthcare providers. Our DA was designed to assist patients and healthcare providers to involve decision-making about whether to taper BZD anxiolytics or not.

This report presents the findings of an evaluation of the Illawarra Wingecarribee Alliance Aboriginal Corporation (IWAAC) Local Decision Making Accord implementation. The evaluation was co-designed with IWAAC and key public sector officials involved in implementing the Accord. Its findings are based on the research team’s independent assessment of the data collected. The evaluation methods included a workshop with IWAAC delegates, interviews or group discussions with IWAAC staff, delegates and former delegates, Elders and board members, and other community members, as well as interviews with senior government staff involved in the Accord’s implementation. Acknowledgments The CAEPR research team acknowledges Country and Elders past, present and future in Illawarra Wingecarribee Alliance Aboriginal Corporation (IWAAC) communities. The Illawarra-Wingecarribee region sits on the lands of the Dharawal, Yuin and Gandangara peoples which include the Wodi, Elouera and other local language groups. We wish to thank IWAAC, their member organisations and associated community-controlled organisations for their time and helpful collaboration in carrying out this evaluation including for allowing us to conduct workshops during their IWAAC meetings. We thank and acknowledge the contributions of employees of the NSW Government and one external consultant. The team would also like to acknowledge and thank the members of the OCHRE Evaluation Steering Committee for their guidance and support.

Objective Based on the principle of the autonomy of the patient, shared decision-making (SDM) is the ideal approach in clinical encounters. In SDM, patients and healthcare professionals (HCPs) share knowledge and power when faced with the task of making decisions. However, patients are often not involved in the decision-making process. In this study, we explore medication decision-making during hospitalization and how power in the specific patient—HCP relationship is articulated, as analysed by Foucauldian theory. Methods A qualitative case study, comprising observations of patient-HCP encounters at an internal medicines ward at a university hospital in Norway, followed by semi-structured interviews. The narratives (n = 4 patients) were selected from a larger study (n = 15 patients). The rationale behind the choice of these patients was to include diverse and rich accounts. The four patients in their 40s–70s were included close to the day of presumed discharge. Results The narratives provide an insight into the patients as persons, their perspectives, including what mattered to them during their hospitalization, especially in relation to medications. Overall, SDM was not observed in this study. Even though all the participants actively tried to keep their autonomous capacity and to resist the HCPs’ use of power, they were not able to change the established dynamics. Moreover, they were not allowed an equal voice to those of HCPs and thus not to escape the system’s objectification and subjectification of them. Conclusion There is a need for HCPs to get more familiarized with SDM. The healthcare system and the individual HCP need to make more room for dialogue with the patients about their preferences. A part of this is also how health care systems are structured and scheduled, thus, it is important to empower patients and HCPs alike.

Although shared decision making (SDM) has become the most preferable way in doctor–patient communication, it is not fully implemented in mental health care likely due to the complex nature of psychiatric syndromes and treatments. In this review we provide a systematic overview of all perceived and reported barriers to SDM in the literature, acknowledging field-specific challenges, and offering perspectives to promote its wider use. We conducted a systematic search of the wider literature in different databases and included all publications mentioning specified barriers to SDM in psychiatric care. Relevant data and opinions were categorised into micro-, meso- and macro-level themes and put into clinical perspective. We derived 20 barriers to SDM from 100 studies and reports. Eight were on micro-level care delivery, seven involved meso-level issues, five concerned macro-level themes. The multitude of perceived and actual barriers to SDM underline the challenges its implementation poses in mental health care, some of which can be resolved while others are inherent to the nature of the care, with its long-term relationships, complex dynamics, and social consequences, all requiring a flexible approach. We present four perspectives to help change views on the potential of SDM in mental health care.

This report delves into the challenging process of translating complex tests from the Child Brain Lab into a design that is both accessible and engaging for children. The Child Brain Lab, part of the Erasmus MC Sophia Children’s Hospital, conducts research on brain development to gain a better understanding of the course of brain disorders and improve treatments for children with brain disorders. In return for children’s participation in the lab, the hospital aims to provide them with a child-friendly patient dossier: The Self-portrait. The goal of this project is: To design a digital solution that translates the results from a selection of tests that are performed in the Child Brain Lab, into a meaningful contribution for children (developmental age 6-12 years old) with brain disorders, that will increase their participation in their care path, and positively support their developing self-image. To design a solution that caters to the needs of the child patients, first the problem space was explored, through literature research and interviews with stakeholders. Within the age range of the target audience, children develop their language skills and transition from imaginative thinking to more logical reasoning. These cognitive abilities influence the formation of their self-image, which led to the framework for contributing to self-image: ‘Look what I did’ - ‘Look how I did it’ - ‘Look how I did it and what I learned from it.’ This framework was used to adapt the app to the needs of the target audience. In addition, the participants’ brain disorders present additional challenges, such as poor eyesight and a need for predictability. The tests for which a translation is being made in the app are the EEG, IQ test, and walking mat. Each of these tests comes with its own set of challenges. For example, the data from the EEG test is complex and elusive for children, and the analysis is quite intricate for physicians. The results of the IQ test a, Double degree in Integrated Product Design & Design for Interaction Specialisation Medisign, Integrated Product Design, Design for Interaction | Medisign

Navigating consequential decisions is a difficult task in and of itself, especially when they have a significant impact on one's life. This is especially true in the complex world of healthcare, where the importance of choices is magnified. The complexities of these issues can make it difficult for patients and their loved ones to effectively address them while dealing with increased stress and uncertainty. Medical professionals are also under immense pressure to ensure the well-being of their patients. In such scenarios, the indispensable role of decision support tools (DSTs) becomes apparent. These invaluable resources aid both patients and healthcare professionals in selecting the optimal treatment option by carefully considering the risks and benefits involved. DSTs play a vital role in empowering individuals to make well-informed decisions by providing relevant information and facilitating comprehensive analysis. These tools enable the evaluation of various treatment options or potential outcomes. Some DSTs are data-driven, relying on prognostic algorithms. By utilizing analytical methods and algorithms on clinical data, they can offer predictions on survival rates, chances of recurrence, and estimated quality of life, particularly in diseases such as cancer. Although data scientists have worked consistently to develop algorithms and guarantee the validity of the data used, there has been a noticeable lack of focus on defining the qualities of appropriate interaction with decision support tools. Numerous critical aspects remain unclear, such as identifying the appropriate qualities of interaction with a DST, determining the optimal delivery method for these tools, determining the optimal point in the care path to introduce them, specifying the relevant data to be provided to the DST, and deciding what information should be delivered to empower patients in their decision-making process. Furthermore, the integration and practical implementation, Design for Interaction | Medisign

Background Health care has evolved to support the involvement of individuals in decision making by, for example, using mobile apps and wearables that may help empower people to actively participate in their treatment and health monitoring. While the term “participatory health informatics” (PHI) has emerged in literature to describe these activities, along with the use of social media for health purposes, the scope of the research field of PHI is not yet well defined. Objective This article proposes a preliminary definition of PHI and defines the scope of the field. Methods We used an adapted Delphi study design to gain consensus from participants on a definition developed from a previous review of literature. From the literature we derived a set of attributes describing PHI as comprising 18 characteristics, 14 aims, and 4 relations. We invited researchers, health professionals, and health informaticians to score these characteristics and aims of PHI and their relations to other fields over three survey rounds. In the first round participants were able to offer additional attributes for voting. Results The first round had 44 participants, with 28 participants participating in all three rounds. These 28 participants were gender-balanced and comprised participants from industry, academia, and health sectors from all continents. Consensus was reached on 16 characteristics, 9 aims, and 6 related fields. Discussion The consensus reached on attributes of PHI describe PHI as a multidisciplinary field that uses information technology and delivers tools with a focus on individual-centered care. It studies various effects of the use of such tools and technology. Its aims address the individuals in the role of patients, but also the health of a society as a whole. There are relationships to the fields of health informatics, digital health, medical informatics, and consumer health informatics. Conclusion We have proposed a preliminary definition, aims, and relationships of PHI b

Purpose: The present study aimed to investigate whether exposure to a patient decision aid (PDA) had an impact on the proportion of patients selecting non-surgical or surgical treatments after anterior cruciate ligament (ACL) injuries and whether exposure to a PDA affected the proportion of patients switching from non-surgical to surgical treatment within the first year. Methods: In a consecutive case series, proportions of surgery and non-surgery were compared before and after patients’ exposure to a PDA. Data were collected from the health records of patients with ACL injuries who presented to the Clinic of Sports Traumatology. To identify proportional differences between the two groups, t-tests and proportion tests were used. Results: In total, 1,053 patients with ACL injuries were included: 563 patients with no exposure to the PDA (January 2015 to January 2017) and 490 patients with exposure to the PDA (January 2017 to January 2019). Before implementing the PDA, 27% of the patients selected non-surgical treatment. After implementing the PDA, 30% choose non-surgical treatment (p > 0.05). Before implementing the PDA, 21% of patients who initially chose non-surgical treatment had surgery within the first year. After implementation of the PDA, this number fell to 16%, but the difference was not statistically significant (p > 0,05). Conclusion: Exposure to the PDA did not significantly alter the proportion of ACL injury patients selecting non-surgical or surgical treatments or the proportion of patients switching to surgery within the first year.

Objective: Based on the principle of the autonomy of the patient, shared decision-making (SDM) is the ideal approach in clinical encounters. In SDM, patients and healthcare professionals (HCPs) share knowledge and power when faced with the task of making decisions. However, patients are often not involved in the decision-making process. In this study, we explore medication decision-making during hospitalization and how power in the specific patient—HCP relationship is articulated, as analysed by Foucauldian theory. Methods: A qualitative case study, comprising observations of patient-HCP encounters at an internal medicines ward at a university hospital in Norway, followed by semi-structured interviews. The narratives (n = 4 patients) were selected from a larger study (n = 15 patients). The rationale behind the choice of these patients was to include diverse and rich accounts. The four patients in their 40s–70s were included close to the day of presumed discharge. Results: The narratives provide an insight into the patients as persons, their perspectives, including what mattered to them during their hospitalization, especially in relation to medications. Overall, SDM was not observed in this study. Even though all the participants actively tried to keep their autonomous capacity and to resist the HCPs’ use of power, they were not able to change the established dynamics. Moreover, they were not allowed an equal voice to those of HCPs and thus not to escape the system’s objectification and subjectification of them. Conclusion: There is a need for HCPs to get more familiarized with SDM. The healthcare system and the individual HCP need to make more room for dialogue with the patients about their preferences. A part of this is also how health care systems are structured and scheduled, thus, it is important to empower patients and HCPs alike.