Exploring experiences of ageing in older adults living with HIV in Sweden: a qualitative study.

PURPOSE: The number of people living and ageing with HIV is increasing. Insight into their well-being is lacking. The present study was conducted to explore needs, psychosocial issues and experiences of ageing in older adults living with human immunodeficiency virus (HIV) in Sweden. METHODS: A qualitative approach was employed. Semi-structured interviews were conducted with a convenience sample of 22 participants aged 65 years or older living with HIV in Sweden. Thematic analysis based on descriptive phenomenology was used. RESULTS: Being an older adult living with HIV emerged as a multifaceted experience. The meaning and impact of HIV varied from minimal to substantial, and ageing could overshadow the significance of HIV in everyday life. Three themes emerged: 1) increasing age in the foreground, 2) internalizing HIV in everyday life, and 3) socioemotional impact on everyday life. CONCLUSIONS: The findings suggest a need for a more holistic approach to care of older adults living with HIV, recognizing the broader context of healthy ageing. While participants experienced good health, challenges related to ageing persist, and experiencing HIV-related stigma. The findings highlight the importance of empowering older adults living with HIV.

Validation of the Persistent Somatic Symptom Stigma Scale for Healthcare Professionals.

OBJECTIVES: Persistent somatic symptoms (PSS) describe recurrent or continuously occurring symptoms such as fatigue, dizziness, or pain that have persisted for at least several months. These include single symptoms such as chronic pain, combinations of symptoms, or functional disorders such as fibromyalgia or irritable bowel syndrome. While many studies have explored stigmatisation by healthcare professionals toward people with PSS, there is a lack of validated measurement instruments. We recently developed a stigma scale, the Persistent Somatic Symptom Stigma scale for Healthcare Professionals (PSSS-HCP). The aim of this study is to evaluate the measurement properties (validity and reliability) and factor structure of the PSSS-HCP. STUDY DESIGN AND SETTING: The PSSS-HCP was tested with 121 healthcare professionals across the United Kingdom to evaluate its measurement properties. Analysis of the factor structure was conducted using principal component analysis. We calculated Cronbach's alpha to determine the internal consistency of each (sub)scale. Test-retest reliability was conducted with a subsample of participants with a 2-week interval. We evaluated convergent validity by testing the association between the PSSS-HCP and the Medical Condition Regard Scale (MCRS) and the influence of social desirability using the short form of the Marlowe-Crowne Social Desirability Scale (MCSDS). RESULTS: The PSSS-HCP showed sufficient internal consistency (Cronbach's alpha = 0.84) and sufficient test-retest reliability, intraclass correlation = 0.97 (95% CI 0.94-0.99, P < .001). Convergent validity was sufficient between the PSSS-HCP and the MCRS, and no relationship was found between the PSSS-HCP and the MCSDS. A three factor structure was identified (othering, uneasiness in interaction, non-disclosure) which accounted for 60.5% of the variance using 13 of the 19 tested items. CONCLUSION: The PSSS-HCP can be used to measure PSS stigmatisation by healthcare professionals. The PSSS-HCP has demonstrated sufficient internal consistency, test-retest reliability, convergent validity and no evidence of social desirability bias. The PSSS-HCP has demonstrated potential to measure important aspects of stigma and provide a foundation for stigma reduction intervention evaluation.

Interprofessional contact with conventional healthcare providers in oncology: a survey among complementary medicine practitioners.

BACKGROUND: Half of all patients with cancer use complementary medicine. Given the benefits and risks associated with complementary medicine use, contact between complementary medicine practitioners and conventional healthcare providers (oncologists, nurses) is important for monitoring the health and well-being of mutual patients with cancer. Research on occurrence of such interprofessional contact is scarce. This study aims to describe complementary medicine practitioners' experiences with contact with conventional healthcare providers about mutual patients with cancer and the importance they attach to patient disclosure of complementary medicine use to their conventional healthcare provider. Predictors for interprofessional contact are explored. METHODS: An online survey was administered among complementary medicine practitioners who treat patients with cancer or cancer survivors and who are member of a professional association in the Netherlands. RESULTS: The survey was completed by 1481 complementary medicine practitioners. 40% of the participants reported to have contact with conventional healthcare providers of patients with cancer. Only 13% of the complementary medicine practitioners experienced conventional healthcare providers as open to communication with them. An explorative logistic regression showed that openness of conventional healthcare providers as experienced by complementary medicine practitioners was the most important predictor for the occurrence of interprofessional contact (OR = 8.12, 95% CI 5.12-12.86, p < .001). Most complementary medicine practitioners (82%) considered it important that patients disclose complementary medicine use to their conventional healthcare provider and 49% of the participants always motivates their patients to do so. CONCLUSIONS: Interprofessional contact with conventional healthcare providers in oncology occurs but is not routine for most complementary medicine practitioners. More than one-third of the surveyed complementary medicine practitioners experienced conventional healthcare providers as not open to communication with them. The openness of conventional healthcare providers as experienced by complementary practitioners is an important predictor for interprofessional contact to take place. Most complementary practitioners acknowledge the importance of patient disclosure of complementary medicine use to their conventional healthcare provider. Open communication about the topic of complementary medicine use between complementary practitioners, conventional healthcare providers and patients prevents overlooking relevant medical information and facilitates optimal monitoring of health and safety of patients with cancer.

Measuring persistent somatic symptom related stigmatisation: Development of the Persistent Somatic Symptom Stigma scale for Healthcare Professionals (PSSS-HCP).

OBJECTIVE: Persistent somatic symptoms (PSS) describe recurrent or continuously occurring symptoms such as fatigue, dizziness, or pain that have persisted for at least several months. These include single symptoms such as chronic pain, combinations of symptoms, or functional disorders such as fibromyalgia or irritable bowel syndrome. While stigmatisation by healthcare professionals is regularly reported, there are limited measurement instruments demonstrating content validity. This study develops a new instrument to measure stigmatisation by healthcare professionals, the Persistent Somatic Symptom Stigma scale for Healthcare Professionals (PSSS-HCP). METHODS: Development was an iterative process consisting of research team review, item generation and cognitive interviewing. We generated a longlist of 60 items from previous reviews and qualitative research. We conducted 18 cognitive interviews with healthcare professionals in the United Kingdom (UK). We analysed the relevance, comprehensibility and comprehensiveness of items, including the potential for social desirability bias. RESULTS: After research team consensus and initial feedback, we retained 40 items for cognitive interviewing. After our first round of interviews (n = 11), we removed 20 items, added three items and amended five items. After our second round of interviews (n = 7), we removed four items and amended three items. No major problems with relevance, comprehensibility, comprehensiveness or social desirability were found in remaining items. CONCLUSIONS: The provisional version of the PSSS-HCP contains 19 items across three domains (stereotypes, prejudice, discrimination), demonstrating sufficient content validity. Our next step will be to perform a validation study to finalise item selection and explore the structure of the PSSS-HCP.

The Association Between Stuttering Burden and Psychosocial Aspects of Life in Adults.

PURPOSE: Stuttering is a speech condition that can have a major impact on a person's quality of life. This descriptive study aimed to identify subgroups of people who stutter (PWS) based on stuttering burden and to investigate differences between these subgroups on psychosocial aspects of life. METHOD: The study included 618 adult participants who stutter. They completed a detailed survey examining stuttering symptomatology, impact of stuttering on anxiety, education and employment, experience of stuttering, and levels of depression, anxiety, and stress. A two-step cluster analytic procedure was performed to identify subgroups of PWS, based on self-report of stuttering frequency, severity, affect, and anxiety, four measures that together inform about stuttering burden. RESULTS: We identified a high- (n = 230) and a low-burden subgroup (n = 372). The high-burden subgroup reported a significantly higher impact of stuttering on education and employment, and higher levels of general depression, anxiety, stress, and overall impact of stuttering. These participants also reported that they trialed more different stuttering therapies than those with lower burden. CONCLUSIONS: Our results emphasize the need to be attentive to the diverse experiences and needs of PWS, rather than treating them as a homogeneous group. Our findings also stress the importance of personalized therapeutic strategies for individuals with stuttering, considering all aspects that could influence their stuttering burden. People with high-burden stuttering might, for example, have a higher need for psychological therapy to reduce stuttering-related anxiety. People with less emotional reactions but severe speech distortions may also have a moderate to high burden, but they may have a higher need for speech techniques to communicate with more ease. Future research should give more insights into the therapeutic needs of people highly burdened by their stuttering. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.25582980.

Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients' perspectives.

Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients' experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

Shared decision-making in undergraduate nursing and medical education: An explorative dual-method study.

OBJECTIVE: This study explores how shared decision-making (SDM) is integrated in undergraduate nursing and medical education. METHODS: A dual-method design was applied. The integration of SDM in medicine and nursing education programs (i.e. SDM on paper) was explored through document analyses; the integration of SDM in curricula (i.e. SDM in class) through interviews with teachers and curriculum coordinators (N = 19). RESULTS: A majority of the education programs featured SDM, mostly non-explicit. In curricula SDM was generally implicitly featured in compulsory courses across all study years. SDM was often integrated into preexisting theories and models and taught through various methods and materials. Generally, teachers and supervisors were not trained in SDM themselves. They assessed students' competence in SDM in a summative manner. CONCLUSION: Overall, SDM was featured in undergraduate nursing and medical education, however, very implicitly.

Outpatient Video Visits During the COVID-19 Pandemic: Cross-Sectional Survey Study of Patients' Experiences and Characteristics.

BACKGROUND: During the first lockdown of the COVID-19 pandemic, an exponential increase in video consultations replacing in-person outpatient visits was observed in hospitals. Insight into patients' experiences with this type of consultation is helpful for a broad, sustainable, and patient-centered implementation of video consultation. OBJECTIVE: This study aims to examine patients' experiences with video consultation during the COVID-19 pandemic and identify discriminative patient and consultation characteristics to determine when video consultation is most feasible. METHODS: A cross-sectional survey study was conducted. Patients aged ≥18 years and scheduled for a video consultation at the outpatient clinic of a Dutch university medical center from August 2020 to December 2020 for all medical specialties were eligible. Patients' experiences were explored through a study-specific survey using descriptive quantitative statistics. Open-ended questions were qualitatively analyzed and thematically categorized into appreciated aspects and aspects for improvement. Discriminative patient and consultation characteristics were identified using 3 distinctive survey items. Characteristics of patients who scored and those who did not score all 3 items positively were analyzed using binary logistic regression. RESULTS: A total of 1054 patients were included in the analysis. Most patients (964/1054, 91.46%) were satisfied with their video consultation, with a mean overall grade of 8.6 (SD 1.3) of 10. In the qualitative analyses, 70.02% (738/1054) of the patients cited aspects they appreciated and 44.97% (474/1054) mentioned aspects for improvement during their consultation. Patients with better self-rated health reported a positive evaluation significantly more often (P=.001), which also held true for other medical specialties (vs surgical and nonsurgical specialties; P<.001). CONCLUSIONS: Video consultation was perceived as highly satisfactory by patients during the COVID-19 pandemic, with the best experience reported by healthy participants and those undergoing their first consultation. Appreciated aspects are mainly at the individual professional level, organizational level, and innovation level itself. The aspects that were mentioned for improvement can be changed for the better.

Reinforcing the humanity in healthcare: The Glasgow Consensus Statement on effective communication in clinical encounters.

Contemporary healthcare is characterized by multidisciplinary teamwork across a vast array of primary, secondary and tertiary services, augmented by progressively more technology and data. While these developments aim to improve care, they have also created obstacles and new challenges for both patients and health professionals. Indeed, the increasingly fragmented and transactional nature of clinical encounters can dehumanize the care experience across disciplines and specialties. Effective communication plays a pivotal role in reinforcing the humanity of healthcare through the delivery of person-centered care - compassionate, collaborative care that focuses on the needs of each patient as a whole person. After convening at the International Conference on Communication in Healthcare (Glasgow, 2022), an interdisciplinary group of researchers, educators and health professionals worked together to develop a framework for effective communication that both acknowledges critical challenges in contemporary health services and reinforces the humanity of healthcare. The Glasgow Consensus Statement is intended to function as a useful international touchstone for the training and practice of health professionals, fully recognizing and respecting that different countries are at different stages when it comes to teaching, assessment and policy. It also provides a vocabulary for monitoring the impact of system-level challenges. While effective communication may not change the structure of healthcare, it can improve the process if health professionals are supported in infusing the system with their own innate humanity and applying the framework offered within this consensus statement to reinforce the humanity in everyday practice.

The patient's first point of contact (PINPOINT) - protocol of a prospective multicenter study of communication and decision-making during patient assessments by primary care registered nurses.

BACKGROUND: A major challenge for primary care is to set priorities and balance demands with available resources. The registered nurses in this study are practice nurses working in primary care offices, playing a large role in initial assessments. The overall objective of this research is to investigate practices of communication and decision-making during nurses' initial assessment of patients' health problems in primary care, examine working mechanisms in good practices and develop feasible solutions. METHODS: Project PINPOINT aims for a prospective multicenter study using various methods for data collection and analysis. A purposive sample of 150 patient‒nurse consultations, including 30 nurses and 150 patients, will be recruited at primary care centers in three different geographic areas of southwest Sweden. The study will report on outcomes of communication practices in relation to patient-reported expectations and experiences, communication processes and patient involvement, assessment and decision-making, related priorities and value conflicts with data from patient questionnaires, audio-recorded real-time communication, and reflective interviews with nurses. DISCUSSION: This research will contribute to the knowledge needed for the guidance of first-line decision-making processes to best meet patient and public health needs. This knowledge is necessary for the development of assessments and decisions to be better aligned to patients and to set priorities. Insights from this research can empower patients and service providers and help understand and enhance feasible person-centered communication strategies tailored to patients' level of health literacy. More specifically, this research will contribute to knowledge that can strengthen nurses' communication, assessments, and clinical decision-making in primary care. In the long term, this will contribute to how the competencies of practice nurses and other professionals are organized and carried out to make the best use of the resources within primary care. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT06067672.

[Palliative care benefits from careful use of words]. / Palliatieve zorg vaart wel bij aandacht voor woorden.

Worldwide, meaning and valence of words are being examined and weighed. This also occurs in healthcare, where campaigns demand attention for the fact that being terminally ill does not mean that there are no treatments left. Such efforts are commendable as there is room for improvement in the communication between healthcare providers and patients and healthcare providers are not equally well equipped to communicate effectively. Still, a US study in palliative surgery suggests that patients do not prefer one particular communication framework over another, tailoring of words seems the way to go. This may be especially beneficial for patients with a limited level of health literacy. Communication tools like the 'teach back' method, e-learnings and language guides can furthermore support healthcare providers in palliative care to continue to choose their words carefully with patients with a limited life expectancy.

The Effects of Complementary Therapies on Patient-Reported Outcomes: An Overview of Recent Systematic Reviews in Oncology.

Many patients with cancer make use of complementary medicine alongside conventional medicine, but clinicians in oncology often lack the knowledge to adequately advise patients on the evidence base for complementary therapies. This study aims to provide an overview of recently published systematic reviews that assess the effects of complementary therapies on patient-reported health outcomes in patients with cancer. Systematic reviews, including a meta-analysis of at least two randomized controlled trials, were identified from the PubMed, Embase, Cochrane Library, CINAHL and PsycINFO databases. The methodological quality was assessed with AMSTAR 2. One hundred systematic reviews were included. The results suggest that several complementary therapies can improve health outcomes reported by patients with cancer, such as acupuncture to relieve pain, music interventions to reduce anxiety and yoga to improve cancer-related fatigue. The side effects related to complementary therapy use are generally mild. The results remain inconclusive for some intervention-outcome combinations. Many of the included systematic reviews insufficiently assessed the causes and impact of bias in their interpretation of the results. This overview of systematic reviews can support clinicians in counselling their patients on this topic and provide directions for future research and clinical practice guidelines in the field of complementary medicine.

Perspectives and Attitudes of Dutch Healthcare Professionals Regarding the Integration of Complementary Medicine in Oncology.

INTRODUCTION: Almost half of all patients with cancer use complementary medicine (CM) alongside conventional cancer treatment. Further integration of CM into clinical practice could enhance communication and ensure improved coordination between complementary medicine and conventional care. This study assessed the perspectives of healthcare professionals on the current status of integration of CM in oncology, as well as their attitudes and beliefs toward CM. METHODS: A convenience, volunteer sample of healthcare providers and healthcare managers working in oncology in the Netherlands were surveyed, using a self-reporting, anonymous, online questionnaire. The perspectives on the current status of integration and barriers to implementing complementary medicine were characterized in part 1, while part 2 assessed respondents' attitudes and beliefs regarding CM. RESULTS: A total of 209 people completed part 1 of the survey and 159 people completed the entire questionnaire. Two-thirds (68.4%) of the respondents indicated that their organization has implemented complementary medicine in oncology, or envisions implementation, while 49.3% stated they were missing something to implement CM in oncology. About 86.8% of the respondents (completely) agreed that complementary medicine is an important supplement to oncological treatment. Female respondents were more likely to express positive attitudes, as well as respondents whose institutions have implemented CM. CONCLUSION: The findings of this study indicate that attention is being paid to the integration of CM into oncology. Overall, the attitudes of respondents toward CM were positive. The main barriers for implementing CM activities were missing knowledge, experience, financial support, and support from management. To improve the ability of healthcare providers to guide patients in their use of complementary medicine, these issues should be delved into in future research.

Good versus bad news consultations in advanced breast cancer: the role of empathy in information recall - an observational study.

OBJECTIVE: We explored, in advanced breast cancer, whether: (1) patients recall less information following bad versus good news consultations; (2) empathy has a greater effect on recalled information following bad versus good news consultations. METHODS: Observational study using audio-recorded consultations. Participants' recall of provided information about treatment options, aims/positive effects and side-effects was assessed. Clinician-expressed empathy and consultation type were determined. Regression analyses assessed associations between consultation type and recall, exploring moderating influences of clinician-expressed empathy. RESULTS: For 41 consultations (18 bad news, 23 good news), recall data were completed; total recall (47% vs 73%, p=0.03) and recall about treatment options (67% vs 85%, p=0.08, trend) were significantly worse following bad news compared with good news consultations. Recall about treatment aims/positive effects (53% vs 70%, p=0.30) and side-effects (28% vs 49%, p=0.20) was not significantly worse following bad news. Empathy moderated the relationship between consultation type and total recall (p<0.01), recall about treatment options (p=0.03) and about aims/positive effects (p<0.01) but not about side-effects (p=0.10). Only following good news consultations empathy influenced recall favourably. CONCLUSIONS: This explorative study suggests that in advanced cancer, information recall is especially impaired following bad news consultations, for which empathy does not improve remembered information.

Persistent somatic symptom related stigmatisation by healthcare professionals: A systematic review of questionnaire measurement instruments.

OBJECTIVE: Patients with persistent somatic symptoms (PSS) experience stigmatising attitudes and behaviours by healthcare professionals. While previous research has focussed on individual manifestations of PSS related stigma, less is known about sound ways to measure stigmatisation by healthcare professionals towards patients with PSS. This review aims to assess the quality of questionnaire measurement instruments and make recommendations about their use. METHODS: A systematic review using six databases (PubMed, Embase, CINAHL, PsycINFO, Open Grey and EThOS). The search strategy combined three search strings related to healthcare professionals, PSS and stigma. Additional publications were identified by searching bibliographies. Three authors independently extracted the data. Data analysis and synthesis followed COSMIN methodology for reviews of outcome measurement instruments. RESULTS: We identified 90 publications that met the inclusion criteria using 62 questionnaire measurement instruments. Stereotypes were explored in 92% of instruments, prejudices in 52% of instruments, and discrimination in 19% of instruments. The development process of the instruments was not rated higher than doubtful. Construct validity, structural validity, internal consistency and reliability were the most commonly investigated measurement properties. Evidence around content validity was inconsistent or indeterminate. CONCLUSION: No instrument provided acceptable evidence on all measurement properties. Many instruments were developed for use within a single publication, with little evidence of their development or establishment of content validity. This is problematic because stigma instruments should reflect the challenges that healthcare professionals face when working with patients with PSS. They should also reflect the experiences that patients with PSS have widely reported during clinical encounters.

Understanding the role of positive emotions in healthcare communication - A realist review.

AIM: To explore how the expression of positive emotions during the interaction between patients and providers can cultivate the patient-provider relationship. DESIGN: We conducted a realist review guided by the Realist and Meta-narrative Evidence Syntheses: Evolving Standards. METHODS: We systematically searched CINAHL, MEDLINE, PsychINFO and Scopus from inception to March 2019. Study selection and data extraction were performed blinded in pairs. From 3146 abstracts blinded in pairs, 15 papers were included and analysed. From each included paper, we extracted contexts, mechanisms and outcomes that were relevant to answer our research questions, creating a configuration between these elements (CMO configuration). RESULTS: Our findings suggest that in the contexts of person orientation and positive outlook, patient-provider relationships improve by communication conveying and eliciting positive emotions. We found six underlying mechanisms for this that form either direct or indirect pathways between the context and the outcome.

Registered nurse-patient communication research: An integrative review for future directions in nursing research.

AIM: To explore communication research in nursing by investigating the theoretical approaches, methods, content and perspectives in research on real-time registered nurse (RN)-patient communication. DESIGN: An integrative review of real-time communication between RNs and patients. DATA SOURCES: Empirical research papers were searched in PubMed, CINAHL Plus and Medline. The results from the database searches were supplemented with results from manual searches in reference lists. REVIEW METHODS: A total of 1369 articles published between January 1996 and December 2021 were screened, which resulted in the inclusion of 52 articles. RESULTS: The integration of various theories, such as nursing or communication theories, is weak in most of the included studies. RN-patient communication appears to influence relationship building. Even when nurses strive to meet patients' needs, they often focus primarily on nursing routines and physical care. The topic of the communication varies depending on the situation and different communication styles are used. When a patient-centred approach is adopted, the interpersonal communication becomes quite symmetrical, with complementary roles of nurses and patients. Within a more asymmetric communication context, nurses dominate communication, choose topics and function as instructors. How the nurses communicated subsequently influenced the patients' communication styles and strategies. CONCLUSION: Communication is multifaceted, contains different strategies and is important for building trust and facilitating patient-centred care. The importance of RNs' communication for interaction and relationship-building seems to be well established within research, but few studies focused on patients' communication with RNs. IMPACT: This integrative review gives an overview of the width and depth of observational studies on RN-patient communication research. The variety of studies indicates that this area is a less well-grounded field of research. Future research is warranted to support nurses in their communication, especially regarding the exploration of patients' communication and desired communication skills in nurse-patient interactions. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was included in this integrative review.

The Web-Based Advance Care Planning Program "Explore Your Preferences for Treatment and Care": Development, Pilot Study, and Before-and-After Evaluation.

BACKGROUND: Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based. OBJECTIVE: We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care. METHODS: The program "Explore your preferences for treatment and care" was developed, pilot-tested on feasibility, and subsequently evaluated; engagement in ACP was assessed before program completion and 2 months after program completion using the ACP Engagement Survey (score 1-5) among 147 persons with chronic disease. Usability (score 0-100) and user satisfaction (score 1-5) were also assessed. RESULTS: ACP engagement increased from 2.8 before program completion to 3.0 two months after program completion (P<.001); contemplation about ACP increased from 2.6 to 2.8 (P=.003), and readiness for ACP increased from 2.2 to 2.5 (P<.001). No changes were found for knowledge about ACP (3.0-3.2; P=.07) and self-efficacy for ACP (3.8-3.8; P=.25). The program was perceived as usable (mean 70, SD 13), attractive (mean 3.8, SD 0.7), and comprehensible (mean 4.2, SD 0.6). CONCLUSIONS: We developed an evidence-based, interactive web-based ACP program in cocreation with patients, relatives, and health care professionals. Before-and-after evaluation showed that the program can support people in taking first steps in ACP and in reflecting on preferences for treatment and care, by guiding them through the process of ACP using a stepwise approach. Participants perceived the program as usable and understandable, and they were satisfied with the program and with the amount of information. Health care professionals may use the program as a tool to start ACP discussions with their patients. The program may increase awareness of ACP.

Gaming for Adherence to Medication using Ehealth in Rheumatoid arthritis (GAMER) study: a randomised controlled trial.

OBJECTIVE: To examine the effect on adherence to disease modifying anti-rheumatic drugs (DMARDs) in participants with rheumatoid arthritis (RA) of a serious game that targeted implicit attitudes toward medication. METHODS: A multicentre randomised controlled trial (RCT) was performed with adults with RA that used DMARDs and possessed a smartphone/tablet. Control and intervention groups received care as usual. The intervention group played the serious game at will during 3 months. Game play data and online questionnaires Compliance Questionnaire on Rheumatology (CQR), Beliefs about Medicine Questionnaire (BMQ), Health Assessment Questionnaire (HAQ) and Rheumatoid Arthritis Disease Activity Index (RADAI) were collected. Primary outcome was DMARD implementation adherence operationalised as the difference in proportion of non-adherent participants (<80% taking adherence) between intervention and control group after 3 months using a Chi-squared test. Two sample t-tests and Wilcoxon rank-sum test were performed to test for differences on secondary outcomes. RESULTS: Of the 110 intervention participants that started the study, 87 participants (79%) installed the game and had a median playtime of 9.7 hours at 3 months. Overall, 186 participants completed the study. Adherence in intervention group (63%) and control group (54%) did not differ significantly (p=0.13) at 3 months. Neither were there differences oberved in CQR continuous score, beliefs about medication (BMQ) or clinical outcomes (HAQ and RADAI). CONCLUSION: A serious game aimed at reinterpreting attitudes toward medication failed to show an effect on adherence to DMARDs or clinical outcomes in patients with RA. The game was played frequently indicating that it can be an effective channel for reaching patients. TRIAL REGISTRATION NUMBER: NL7217.