The effectiveness of personalised surveillance and aftercare in breast cancer follow-up: a systematic review.

PURPOSE: Breast cancer follow-up (surveillance and aftercare) varies from one-size-fits-all to more personalised approaches. A systematic review was performed to get insight in existing evidence on (cost-)effectiveness of personalised follow-up. METHODS: PubMed, Scopus and Cochrane were searched between 01-01-2010 and 10-10-2022 (review registered in PROSPERO:CRD42022375770). The inclusion population comprised nonmetastatic breast cancer patients ≥ 18 years, after completing curative treatment. All intervention-control studies studying personalised surveillance and/or aftercare designed for use during the entire follow-up period were included. All review processes including risk of bias assessment were performed by two reviewers. Characteristics of included studies were described. RESULTS: Overall, 3708 publications were identified, 64 full-text publications were read and 16 were included for data extraction. One study evaluated personalised surveillance. Various personalised aftercare interventions and outcomes were studied. Most common elements included in personalised aftercare plans were treatment summaries (75%), follow-up guidelines (56%), lists of available supportive care resources (38%) and PROs (25%). Control conditions mostly comprised usual care. Four out of seven (57%) studies reported improvements in quality of life following personalisation. Six studies (38%) found no personalisation effect, for multiple outcomes assessed (e.g. distress, satisfaction). One (6.3%) study was judged as low, four (25%) as high risk of bias and 11 (68.8%) as with concerns. CONCLUSION: The included studies varied in interventions, measurement instruments and outcomes, making it impossible to draw conclusions on the effectiveness of personalised follow-up. There is a need for a definition of both personalised surveillance and aftercare, whereafter outcomes can be measured according to uniform standards.

Web-based self-help intervention for partners of cancer patients based on acceptance and commitment therapy and self-compassion training: a randomized controlled trial with automated versus personal feedback.

PURPOSE: To evaluate the effectiveness of two versions (personal or automated feedback) of a psychological Web-based self-help intervention targeting partners of cancer patients. The intervention was based on acceptance and commitment therapy (ACT) and self-compassion training. Participants' adherence and their satisfaction were also studied. METHODS: Two hundred three partners of patients with heterogeneous entities of cancer were randomized into three conditions: personal feedback (PF) (n = 67), automated feedback (AF) (n = 70), or waiting list (WL) control (n = 66). Participants completed measures at baseline (T0) and post-intervention (T1; 3 months after baseline) to assess psychological distress (HADS; primary outcome), positive mental health, caregiver strain, general health (secondary outcomes), posttraumatic growth, resilience, self-compassion, psychological flexibility, sense of mastery, and relational communication style (process measures). Participants in the two experimental conditions also completed these measures at follow-up (T2; 6 months after baseline). RESULTS: There was no significant difference in change in psychological distress, positive mental health, caregiver strain and general health from T0 to T1 for either of the experimental conditions compared with the WL-condition. However, when compared to a WL-condition, the PF-condition was effective in increasing psychological flexibility (effect size d = 0.49) and resilience (d = 0.12) and decreasing overprotection (d = 0.25), and the AF-condition was effective in reducing overprotection (d = 0.36) and improving protective buffering (d = 0.36). At follow-up, the PF-condition was more effective than the AF-condition for improving mental health (d = 0.36), psychological flexibility (d = 0.60), mastery (d = 0.48), and protective buffering (d = 0.24). Participants positively appreciated the intervention and 69% participants were adherent. CONCLUSION: This study demonstrates that a Web-based intervention based on ACT and self-compassion training with automated or personal feedback does not seem to improve psychological distress; however, it may have the potential to support partners of cancer patients to cope with the difficult situation they are facing. The condition with personal feedback seemed to be more beneficial.

Follow-up after breast cancer: Variations, best practices, and opportunities for improvement according to health care professionals.

OBJECTIVE: Follow-up after breast cancer can be divided into surveillance and aftercare. It remains unclear how follow-up can ideally be organised from the perspective of health care professionals (HCPs). The aim of this study was to gain insight in the organisation of follow-up in seven Dutch teaching hospitals and to identify best practices and opportunities for improvement of breast cancer (all stages) follow-up as proposed by HCPs. METHODS: Semi-structured in-depth group interviews were performed, one in each of the participating hospitals, with in total 16 HCPs and 2 patient advocates. To describe the organisation of follow-up, transcripts were analysed using a deductive approach. Best practices and opportunities were derived using an inductive approach. RESULTS: Variation was found in the organisation of aftercare, especially in timing, frequency, and disciplines of involved HCPs. Less variation was observed for surveillance, which was guided by the national guideline. Best practices focused on case management and adequate collaboration between HCPs of different disciplines. Mentioned opportunities were improving the structured monitoring of patients' needs and a comprehensive guideline for organisation and content of aftercare. CONCLUSIONS: Variation in follow-up existed between hospitals. Shared decision-making (SDM) about surveillance is desirable to ensure that surveillance matches the patient needs, preferences, and personal risk for recurrences.

Developing a digital training tool to support oncologists in the skill of information-provision: a user centred approach.

BACKGROUND: For patients with cancer, being well informed by their oncologist about treatment options and the implications thereof is highly relevant. Communication skills training (CST) programs have shown to be effective in improving clinicians' communication skills, yet CSTs are time-consuming, inconvenient to schedule, and costly. Online education enables new ways of accessible learning in a safe and personalised environment. AIM AND METHODS: We describe the design of a digital CST-tool for information provision skills that meets oncologists' learning needs. We used the CeHRes Roadmap for user-centred design as a guiding framework. Phase 1 (Contextual Inquiry) involved consultation of the literature and a focus group interview study to uncover the learning needs and training preferences of clinicians' regarding a digital training for the skill of information-provision. In phase 2 (Value Specification), two multidisciplinary expert panels specified the learning content and format of a digital training. Phase 3 (Design) encompassed an iterative development process, including two user group assessment sessions and 5 individual user sessions in which prototypes were tested. All sessions were recorded and independently analyzed by two researchers. RESULTS: Based on literature and consultation of the users in the inquiry phase of the development process, and on expert opinion in the value specification phase, relevant (sub) skills and user requirements were defined to consider for the digital training format. It was decided to develop a conventional e-learning and a chatbot. Personalization and interactivity were integrated in the prototypes by including features that allow for e.g., choosing text, video or animation; to upload video-recorded consultations to receive peer-feedback; and to consult a communication expert. Results revealed that, overall, participants expressed a willingness to use a digital training tool to acquire information-provision skills. Individual user testing (including junior clinicians), indicated a preference for the chatbot over the e-learning. CONCLUSION: We offer a description of extensive development work which was conducted in collaboration with multiple health care professionals to iteratively develop two innovative prototypes of digital tools that would appropriately engage oncologists in learning effective information giving skills. The resulting prototypes were well appreciated and thus provide a solid basis for further development and testing.

Exploring facilitators and barriers to using a person centered care intervention in a nursing home setting.

Person-centered care (PCC) interventions have the potential to improve resident well-being in nursing homes, but can be difficult to implement. This study investigates perceived facilitators and barriers reported by nursing staff to using a PCC intervention consisting of three components: assessment of resident well-being, planning of well-being support, and behavioral changes in care to support resident well-being. Our explorative mixed method study combined interviews (n = 11) with a longitudinal survey (n = 132) to examine which determinants were most prevalent and predictive for intention to use the intervention and actual implementation 3 months later (n = 63). Results showed that perceived barriers and facilitators were dependent on the components of the intervention. Assessment of resident well-being required a stable nursing home context and a detailed implementation plan, while planning of well-being support was impeded by knowledge. Behavioral changes in nursing care required easy integration in daily caring tasks and social support.

Demographic, clinical, lifestyle-related, and social-cognitive correlates of physical activity in head and neck cancer survivors.

PURPOSE: The purpose of the study is to identify demographic, clinical, lifestyle-related, and social-cognitive correlates of physical activity (PA) intention and behavior in head and neck cancer (HNC) survivors using the theory of planned behavior (TPB). METHODS: Data from two cross-sectional studies on correlates of PA in HNC survivors were pooled. Both studies used self-reports to assess PA and social-cognitive correlates. Potential correlates were collected via self-report or medical records. Univariable and multivariable multilevel linear mixed-effects models were built to identify correlates of PA intention and PA behavior (Z scores). Structural equation model analyses were conducted to study the full TPB model in one analysis, taking into account relevant covariates. RESULTS: In total, 416 HNC survivors were surveyed. Their mean (SD) age was 66.6 (9.4) years; 64% were men, and 78% were diagnosed with laryngeal cancer. The structural equation model showed that PA intention was significantly higher in HNC survivors with a history of exercising, who had a more positive attitude, subjective norm, and perceived behavioral control. Patients with higher PA intention, higher PBC, a lower age, and without unintentional weight loss or comorbidities had higher PA behavior. The model explained 22.9% of the variance in PA intention and 16.1% of the variance in PA behavior. CONCLUSIONS: Despite significant pathways of the TPB model, the large proportion variance in PA intention and behavior remaining unexplained suggests the need for better PA behavior (change) models to guide the development of PA promotion programs, particularly for the elderly. Such programs should be tailored to comorbidities and nutritional status.

Towards sustainable mental health promotion: trial-based health-economic evaluation of a positive psychology intervention versus usual care.

BACKGROUND: Mental well-being could be promoted and protected by positive psychology (PP) based interventions. Such interventions may be appealing for people at risk of anxiety and depressive disorders, but health-economic evaluations are scarce. The aim was to examine the cost-effectiveness of a PP intervention. METHODS: Participants with suboptimal levels of mental well-being were randomly assigned to an email guided PP-intervention (n = 137) or a wait-list control group (n = 138) with access to usual care (UC). At baseline and 6 months follow-up, data were collected on health care costs. Outcomes of interest were flourishing mental health and treatment response on anxiety and depressive symptoms. RESULTS: Bootstrapped mean incremental cost-effectiveness ratios were €2359 ($2899) for flourishing, €2959 ($3637) for anxiety and €2578 ($3168) for depression, suggesting appreciable health gains for low additional costs. At a willingness to pay ceiling of €10,000 ($12,290) for a treatment response, the probability that the intervention is deemed cost-effective ranged between 90 and 93%. CONCLUSIONS: The guided PP intervention appears to be a promising strategy as seen from both a public health and a health-economic perspective, especially when there is some willingness to pay. When the PP-intervention is scaled up, then outcome monitoring is recommended to better guarantee the longer term cost-effectiveness of the intervention. TRIAL REGISTRATION: The Netherlands National Trial Register NTR4297. Registered on 29 November 2013. The NTR is part of the WHO Primary Registries.

Intent to use a web-based psychological intervention for partners of cancer patients: Associated factors and preferences.

This study examined partners of cancer patients intention to use a web-based psychological intervention, their preferences regarding its preconditions, functionalities and topics, and factors related to their intention. One hundred and sixty-eight partners completed a questionnaire about these aspects. Forty-eight percent of the partners would (maybe) make use of a web-based intervention. Partners who intended to participate were significantly younger, used the Internet more often, and perceived more caregiver strain. Most partners preferred an intervention that takes less than 1 hour/week, lasts five weeks or more, and contains information and peer support. Half of the partners would like to receive online guidance.

Reasons for (not) discontinuing antipsychotics in dementia.

BACKGROUND: The gap between high antipsychotic prescription rates for patients with dementia and the guidelines' advice to prescribe cautiously indicates that barriers to discontinuation exist. This exploratory study used the theory of planned behaviour to give a first overview of the factors that influence physicians to discontinue antipsychotics in nursing home patients with dementia. METHODS: Forty-one physicians in the Netherlands completed an online survey based on the theory of planned behaviour. RESULTS: Half of the respondents agreed that antipsychotics have positive consequences for patients, such as calming effects. Physicians who indicated that they tend not to discontinue antipsychotics believe that antipsychotics are associated with positive consequences for nursing home staff. Physicians who tend to discontinue antipsychotics had a higher perceived behavioural control than those who indicated having a low intention. CONCLUSION: To enhance discontinuation of antipsychotics, interventions should focus on both patient-related factors and staff-related factors. Prescribing decisions are influenced by staff-related factors that need to be addressed as well.

Determinants of the nurses' and nursing assistants' request for antipsychotics for people with dementia.

BACKGROUND: Although physicians are responsible for writing the antipsychotic prescriptions for patients with dementia, the initiative is often taken by nurses or nursing assistants. To reduce antipsychotics uses, one needs to understand the reasons for nurses and nursing assistants to request them. This study gives an overview of the influencing factors for this request based on the Theory of Planned Behavior in which attitude, beliefs, and behavioral control is thought to influence the intention to request, which in turn affects the behavior to request for a prescription. METHODS: Eighty-one nurses and nursing assistants of one Dutch nursing home organization completed an online survey. RESULTS: Nurses and nursing assistants frequently agreed on items related to the positive effects of antipsychotics for the resident and for the staff. Nurses and nursing assistants with a lower job satisfaction were more likely to call for antipsychotics. Having more positive beliefs about treatment effects and feel of being more in control toward asking for antipsychotics were positively associated with intention to call. All variables explained 59% of the variance of intention. The current position (nurse/nursing assistant) was associated with actual behavior to call. The explained variance was 25%. CONCLUSIONS: Policy-makers should focus on the nurses' and nursing assistants' belief in positive effects of antipsychotics for the resident, which is not in line with available evidence. Nurses and nursing assistants should be educated about the limited effectiveness of antipsychotics.

User-experiences with a web-based self-help intervention for partners of cancer patients based on acceptance and commitment therapy and self-compassion: a qualitative study.

BACKGROUND: Partners of cancer patients are the cornerstone of supportive cancer care. They assume different roles and responsibilities that optimally support the patient. Such support is highly demanding, and many partners report (mental) health problems. However, many of them do not use professional supportive care themselves. Offering a Web-based self-help intervention based on Acceptance and Commitment Therapy (ACT) and self-compassion could be an important resource to support this group. This qualitative study aimed to examine user-experiences with a Web-based self-help intervention based on ACT and self-compassion among partners of cancer patients. METHODS: Individual in-depth interviews, about partners' appreciation of the intervention and lessons learned, were conducted with 14 partners of cancer patients who used the Web-based self-help intervention. Interviews were audio-recorded, transcribed verbatim and analyzed by three independent coders both deductively and inductively. RESULTS: In general, partners appreciated the intervention, however, they also expressed ambivalent feelings towards peer support, the content of the feedback of their counselor, and the 'tunneled' structure of the intervention. The majority of the partners reported being more self-compassionate accepting that they experienced negative thoughts and feelings, they reported that they learned to increase the distance between their thoughts and themselves, they indicated being more aware of their personal values, and they thought that they were better able to commit to those values. They also reported other (non-specific) helpful processes such as insight and acknowledgement, positivity, the possibility to tell their story, time for themselves, and feeling closer and more connected with their partner (the patient). CONCLUSIONS: Partners of cancer patients indicated to appreciate the Web-based self-help intervention based on ACT and self-compassion. They felt that the intervention helped them to cope with negative emotions, thoughts, and one's suffering; to practice self-kindness; and to clarify values based on difficult recent experiences. In addition, they felt that the intervention supported them to obtain insight and acknowledgement, positivity, to tell their story, make time for themselves, and feeling closer and more connected with the patient. We think that a Web-based psychological intervention based on ACT and self-compassion may be a valuable contribution in supporting partners of cancer patients.

Development of a web-based patient decision aid for initiating disease modifying anti-rheumatic drugs using user-centred design methods.

BACKGROUND: A main element of patient-centred care, Patient Decision Aids (PtDAs) facilitate shared decision-making (SDM). A recent update of the International Patient Decision Aids Standards (IPDAS) emphasised patient involvement during PtDA development, but omitted a methodology for doing so. This article reports on the value of user-centred design (UCD) methods for the development of a PtDA that aims to support inflammatory arthritis patients in their choice between disease modifying anti-rheumatic drugs (DMARDs). METHODS: The IPDAS development process model in combination with UCD methods were applied. The process was overseen by an eight-member multidisciplinary steering group. Patients and health professionals were iteratively consulted. Qualitative in-depth interviews combined with rapid prototyping were conducted with patients to assess their needs for specific functionality, content and design of the PtDA. Group meetings with health professionals were organized to assess patients' needs and to determine how the PtDA should be integrated into patient pathways. The current literature was reviewed to determine the clinical evidence to include in the PtDA. To evaluate usability among patients, they were observed using the PtDA while thinking aloud and then interviewed. RESULTS: The combination of patient interviews with rapid prototyping revealed that patients wanted to compare multiple DMARDs both for their clinical aspects and implications for daily life. Health professionals mainly wanted to refer patients to a reliable, easily adjustable source of information about DMARDs. A web-based PtDA was constructed consisting of four parts: 1) general information about SDM, inflammatory arthritis and DMARDs; 2) an application to compare particular DMARDs; 3) value clarification exercises; and 4) a printed summary of patients' notes, preferences, worries and questions that they could bring to discuss with their rheumatologist. CONCLUSIONS: The study demonstrated that UCD methods can be of great value for the development of PtDAs. The early, iterative involvement of patients and health professionals was helpful in developing a novel user-friendly PtDA that allowed patients to choose between DMARDs. The PtDA fits the values of all stakeholders and easily integrates with the patient pathway and daily workflow of health professionals. This collaborative designed PtDA may improve SDM and patient participation in arthritis care.

Use and perceived relevance of health-related Internet sites and online contact with peers among young people with juvenile idiopathic arthritis.

OBJECTIVE: To evaluate the frequency of use and relevance of health-related Internet (HRI) sites and online peer support groups and their association with demographic, disease-related and psychosocial variables in young people with JIA. METHODS: In a cross-sectional study, 176 young people (10-27 years of age) with JIA were asked to complete a questionnaire. The frequency of using HRI sites (regarding information, medication use and aspects of JIA relating to social life), online peer contact and perceived relevance of HRI sites and online peer communication were determined. Associations with demographic variables, disease activity, medication, emotional behaviour and coping were also examined. RESULTS: Seventy-one per cent of the 142 respondents had used the Internet to search for general information on JIA, but specific topics, such as medication, were searched for less often. Twenty-five per cent of respondents had visited a forum or had contacted peers online. The perceived relevance of HRI sites and online peer contact was rated low (median 2.0 and 1.0, respectively; scale 0-10). Apart from female gender (P < 0.01), none of the demographic and disease-related factors were associated with HRI site use. Coping styles, confrontation and reassuring thoughts were associated with increased HRI site use, but only in males. Internalizing and externalizing problem behaviour were not significantly associated. CONCLUSION: The frequency of HRI site use among young people with JIA was less than expected and was considered of low relevance. HRI sites in their present form cannot replace traditional information as an additional source to increase knowledge.

A web-based self-help intervention for partners of cancer patients based on Acceptance and Commitment Therapy: a protocol of a randomized controlled trial.

BACKGROUND: There is a growing recognition that cancer not only affects the lives of the patients, but also the lives of their partners. Partners of cancer patients are highly involved in the illness trajectory by providing informal care and they often experience distress. However, supporting interventions for this group are scarce and existing interventions bear several limitations. On the basis of the need for theory- and evidence-based supportive interventions for partners of cancer patients, the web-based self-help intervention Hold on, for each other has been developed. This intervention is based on Acceptance and Commitment Therapy. The primary objective of the RCT is to investigate the (cost-) effectiveness of the intervention. Additional goals are (1) to examine if psychological flexibility, self-compassion, mastery, supportive behavior, posttraumatic growth and resilience are mediators of the intervention's effects on the partners' mental health; (2) to examine the moderating effects of the socio demographics (age, gender, education, working situation, family situation) and disease-related characteristics of the patients (sort of cancer, stage of disease, duration and treatment of cancer); and (3) to investigate to what extend participants are satisfied with the intervention, which parts of the intervention are mostly used, and how adherent the users are. METHODS/DESIGN: A three-armed randomized controlled trial (RCT) will be conducted to compare two versions of the intervention Hold on, for each other with a waiting list control condition. Both intervention conditions contain the same content and differ only with regard to the form of professional support (personal support versus automatic support). Adult partners of cancer patients with mild to moderate depressive and anxiety symptoms, will be recruited through a multi-component strategy. Online measurements by self-assessment will be made on four measurement points (prior to randomization (baseline-measurement) and 3, 6 and 12 months after baseline). DISCUSSION: When proven effective, Hold on, for each other can be an invaluable contribution to the healthcare system and it could be offered to all partners of cancer patients who are in need for additional support. TRIAL REGISTRATION: Dutch Trial Register, trial registration number NTR4035, date of registration: 17 March 2013.

Impact of patient-accessible electronic medical records in rheumatology: use, satisfaction and effects on empowerment among patients.

BACKGROUND: To measure the use, satisfaction and impact of a web portal which provides patients with rheumatoid arthritis home access to their electronic medical records (EMR). METHODS: A pretest-posttest study was conducted among 360 patients. Questionnaires assessed socio-demographics, health literacy, Internet use, disease characteristics, patient-provider relationship and empowerment before and after launching a hospital-based patient web portal. To measure the impact of the portal, patients' satisfaction with care, trust in their rheumatologist, self-efficacy in patient-provider communication, illness perceptions, and medication adherence were assessed. The post-test included questions on portal use, satisfaction, and self-perceived impact due to portal use. RESULTS: 54% of respondents with Internet access had viewed their EMR. Respondents were positive about the ease of use and usefulness of the portal and reported very few problems. Age (P = .03), amount of Internet use (P = .01) and self-perceived Internet skills (P = .03) significantly predicted portal use. Of the respondents who had logged in, 44% reported feeling more involved in their treatment and 37% felt they had more knowledge about their treatment. Significant differences over time were not found on the empowerment-related instruments. CONCLUSIONS: The current portal succeeded in offering patients access to their EMR in a usable and understandable way. While its true impact is difficult to grasp, a relevant portion of the patients felt more involved in their treatment due to the web portal. Offering patients home EMR access, therefore, appears to be a valuable addition to the care process.

Patient participation in decisions about disease modifying anti-rheumatic drugs: a cross-sectional survey.

BACKGROUND: Involvement of patients in decision-making about medication is currently being advocated. This study examined (the concordance between) inflammatory arthritis patients' preferred and perceived involvement in decision-making in general, and in four specific decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Furthermore, this study examined how patients' involvement is related to satisfaction about decision-making and which factors are related to preferred roles, perceived roles and concordance. METHODS: Using a cross-sectional survey, 894 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis or Ankylosing Spondylitis were sent a questionnaire which focused on medical decisions in general and on four specific decisions: (a) starting with a traditional DMARD; (b) starting to inject methotrexate; (c) starting a biological DMARD; and (d) decreasing or stopping a DMARD. For each decision preferred and perceived involvement in decision-making was assessed using the Control Preference Scale. Concordance was calculated by subtracting the scores for perceived role from scores for the preferred role. Furthermore, satisfaction with the decision process and socio-demographic, health-related, patient-related and physician-related variables were assessed. RESULTS: The response rate was 58%. For all decisions, most patients (59%-63%) preferred Shared Decision-Making (SDM). SDM was perceived frequently (26%-55%) and patients' preferences were met in 54% of the respondents. Yet, in some specific decisions, 26% to 54% of patients would have liked more participation. Perceiving less participation then preferred was associated with less satisfaction with the decision-process, but perceiving more participation than preferred was not. Our results did not reveal any meaningful models to predict preferred or perceived participation in decision-making in general or with reference to specific decisions about DMARDs. CONCLUSIONS: Most arthritis patients prefer to be involved in decisions about their medication and SDM is perceived frequently. Yet, in some specific decisions patient participation can be further improved. Patients especially prefer more participation in decision-making regarding starting a first traditional DMARD, which occurs most commonly in newly diagnosed patients. Whereas perceiving too little participation was associated with decreased satisfaction, perceiving too much participation was not. Therefore, rheumatologists should urge patients to participate in every medical decision.

Evaluation of the Implementation of the Dutch Breast Cancer Surveillance Decision Aid including Personalized Risk Estimates in the SHOUT-BC Study: A Mixed Methods Approach.

BACKGROUND: To improve Shared decision-making (SDM) regarding personalized post-treatment surveillance, the Breast Cancer Surveillance Decision Aid (BCS-PtDA), integrating personalized risk information, was developed and implemented in eight hospitals. The aim of this mixed-methods study was to (1) assess the implementation and participation rates, (2) identify facilitators and barriers for use by health care professionals (HCPs), (3) quantify the observed level of SDM, and (4) evaluate risk communication and SDM application in consultations. METHODS: Implementation and participation rates and patients' BCS-PtDA use were calculated using hospital registry data and BCS-PtDA log data. HCPs' perspective on facilitators and barriers were collected using the MIDI framework. Observed SDM levels in consultation transcripts were quantified using the OPTION-5 scale. Thematic analysis was performed to assess consultation content. RESULTS: The average PtDA implementation and participation rates were, respectively, 26% and 61%. HCPs reported that the PtDA supported choice awareness. Reported barriers for implementation were mainly increased workload and a lack of perceived benefits. The consultation analysis (n = 64) showed patients were offered a choice, but deliberation was lacking. Risk communication was generally adequate. DISCUSSION: When the BCS-PtDA was used, patients were clearly given a choice regarding their post-treatment surveillance, but information provision and SDM application can be improved.

Effectiveness of a positive psychology and mindfulness-based app on mental health for parents of children with a neurodevelopmental disorder: study protocol of a pragmatic international randomized controlled trial.

INTRODUCTION: Parents of children with a neurodevelopmental disorder (NDD) experience more stress than parents of typically developing children. In a cocreation process with experts and parents, a low-threshold application that uses exercises based on the principles of positive psychology and mindfulness was developed. This application, called "Adappt," aims at enhancing the ability to adapt of the parents and caregivers of children with NDDs and at supporting their mental health. This protocol describes the evaluation study of the effectiveness of Adappt, its core working mechanisms and user experiences. METHOD: A pragmatic international multicenter randomized controlled trial will compare the effectiveness of Adappt with a (delayed) waitlist control condition. At least 212 parents or primary caregivers of children younger than 18 years diagnosed with or suspected of a NDD will be randomly assigned to the intervention or waitlist control condition. Participants are excluded if they have severe anxiety or depression levels or are in treatment for mental health issues. Measures will be collected online at baseline, post-intervention (1 month after baseline), and 4 and 7 months after baseline. The primary outcome is the improvement in generic sense of ability to adapt as measured with the Generic Sense of Ability to Adapt Scale (GSAAS; (Front Psychol 14:985408, 2023)) at 4-month follow-up. Secondary outcomes are mental well-being, (parental) distress, and client satisfaction with "Adappt." DISCUSSION: Results of this study will contribute to knowledge on the effectiveness of a low-threshold application for parents of children with a NDD in multiple countries. If the application is found to be effective in improving mental health, recommendations will be made for implementation in health care. TRIAL REGISTRATION: This study is registered on clinicaltrials.gov (NCT06248762) on February 8, 2024, and the Open Science Framework ( https://osf.io/5znqv ).

Giving rheumatology patients online home access to their electronic medical record (EMR): advantages, drawbacks and preconditions according to care providers.

Technology enables patients home access to their electronic medical record (EMR), via a patient portal. This study aims to analyse (dis)advantages, preconditions and suitable content for this service, according to rheumatology health professionals. A two-phase policy Delphi study was conducted. First, interviews were performed with nurses/nurse practitioners (n = 9) and rheumatologists (n = 13). Subsequently, collected responses were quantified, using a questionnaire among the interviewees. The following advantages of patient home access to the EMR were reported: (1) enhancement of patient participation in treatment, (2) increased knowledge and self-management, (3) improved patient-provider interaction, (4) increased patient safety, and (5) better communication with others. Foreseen disadvantages of the service included: (1) problems with interpretation of data, (2) extra workload, (3) a change in consultation content, and (4) disturbing the patient-provider interaction. Also, the following preconditions emerged from the data: (1) optimal security, (2) no extra record, but a patient-accessible section, (3) no access to clinical notes, and (4) a lag time on the release of lab data. Most respondents reported that data on diagnosis, medication, treatment plan and consultations could be released to patients. On releasing more complex data, such as bodily examinations, lab results and radiological images the opinions differed considerably. Providing patients home access to their medical record might be a valuable next step into patient empowerment and in service towards the patient, provided that security is optimal and content and presentation of data are carefully considered.

Measuring actual eHealth literacy among patients with rheumatic diseases: a qualitative analysis of problems encountered using Health 1.0 and Health 2.0 applications.

BACKGROUND: The Internet offers diverse opportunities for disease management, through information websites (Health 1.0) and interactive applications such as peer support forums, online consults, and insight into electronic medical records (Health 2.0). However, various skills are required to benefit from Health 1.0 and Health 2.0 applications for one's own health, known as eHealth literacy. OBJECTIVE: To study the eHealth literacy of patients with rheumatic diseases and the types of problems they encounter when using the Internet in relation to their disease. METHODS: In two studies, patients were asked about their current disease-related Internet use and their eHealth literacy was observed during performance tests. In study 1, 15 patients (aged 39-74) performed 6 information-retrieval tasks on the Internet (Health 1.0). In study 2, 16 patients (aged 24-72) performed 3 Health 2.0 tasks on a hospital-based online Web portal and 2 Health 2.0 tasks on interactive websites. Participants were asked to think aloud while performing the assignments, and screen activities were recorded. Types and frequency of problems were identified by 2 independent researchers and coded into categories using inductive analysis. RESULTS: Almost all patients in our studies had searched the Internet for information about rheumatic diseases in the past. Fewer patients had used Health 2.0 applications, but many were nevertheless enthusiastic about the possibilities from Health 2.0 applications after finishing the assignments. However, nearly all participants experienced difficulties, and a substantial number of participants were not able to complete all of the assignments. Encountered problems could be divided into 6 sequential categories: (1) operating the computer and Internet browser, (2) navigating and orientating on the Web, (3) utilizing search strategies, (4) evaluating relevance and reliability, (5) adding content to the Web, and (6) protecting and respecting privacy. Most severe difficulties occurred in levels 3 and 4-in formulating a search query, evaluating the source of the information, and in scanning a website for relevant information. CONCLUSIONS: Many patients have insufficient skills to properly use Health 1.0 and Health 2.0. Formulating proper search strategies and evaluating the found information caused problems among the majority of patients. Concerning Health 2.0, use and awareness of these applications is low and patients should be guided in the use of them. Our findings may contribute to the awareness of patients' eHealth literacy problems among health professionals, and stress the importance of usability guidelines in Web design.