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Abstract Background Understanding quality of life (QoL) is important in diseases for which there is no cure to date, such as Huntington’s disease (HD). A deeper level of understanding is, however, compromised by the lack of studies examining QoL from the perspectives of HD gene expansion carriers (HDGECs). Only a few qualitative studies on QoL in HD have been performed, yet none investigated how QoL is defined by HDGECs themselves. Objective This qualitative study explores how premanifest and manifest HDGECs define their QoL. Methods Online semi-structured interviews were conducted with 6 premanifest and 6 manifest HDGECs in the Netherlands. Qualitative content analysis was used to explore participants’ QoL definitions via inductive coding and the subsequent formulation of (sub)categories and (sub)themes. Results Premanifest and manifest HDGECs had a different focus when defining QoL. Two subthemes were identified for premanifest HDGECs: Thoughts about a meaningful life regardless of HD and Concerns about the future progression and impact of HD. For manifest HDGECs, two other subthemes were identified: Coming to terms with HD and Shifting perspectives due to the impact of HD. One overall theme was generated, reflecting the difference and adaptive shift in focus between premanifest and manifest HDGECs: Shifting focus from ideality to reality. Conclusions In providing optimal care, HDGECs should be considered as part of a complex, continuously changing environment, thereby taking into account their individual QoL experiences and tailoring care accordingly. HDGECs might benefit from forming helpful beliefs about future adaptability and resilience and developing adaptive coping strategies.

ABSTRACT Background Inflammation has been reported to drive cancer‐related fatigue (CRF). As both obesity and chemotherapy promote inflammatory responses, obese cancer patients may be at risk of more severe CRF, especially when receiving chemotherapy. Methods We analysed data of 333 colon cancer patients from four hospitals in the Netherlands (data derived from the PROCORE study). Fatigue was assessed with the general fatigue subscale of the Multidimensional Fatigue Inventory at four timepoints: at inclusion (T1), 4 weeks after surgery (T2), and 1 (T3) and 2 years (T4) after diagnosis. Linear mixed‐effects models were applied to evaluate the interaction between chemotherapy and body mass index (BMI) on the trajectory of fatigue. Results The two‐way interactions between time and chemotherapy (p = 0.047) and between time and BMI on fatigue (p = 0.041) were significant. Patients scheduled for chemotherapy reported more fatigue during the treatment phase, while patients not treated with chemotherapy showed a stable trajectory. Obese patients reported more fatigue at follow‐up compared to patients with a healthy BMI. The three‐way interaction between time, chemotherapy and BMI was not significant (p = 0.39). However, obese chemotherapy‐treated patients reported the highest fatigue 2 years after treatment (12.8, 95% CI: 10.6–14.9). Their mean fatigue score was higher compared to baseline (9.2, 95% CI: 7.3–11.0, p

Objective Adopting healthy behavior is vital for preventing chronic diseases. Mobile health (mHealth) interventions utilizing virtual coaches (i.e., artificial intelligence conversational agents) can offer scalable and cost-effective solutions. Additionally, targeting multiple unhealthy behaviors, like low physical activity and smoking, simultaneously seems beneficial. We developed Perfect Fit, an mHealth intervention with a virtual coach providing personalized feedback to simultaneously promote smoking cessation and physical activity. Through innovative methods (e.g., sensor technology) and iterative development involving end-users, we strive to overcome challenges encountered by mHealth interventions, such as shortage of evidence-based interventions and insufficient personalization. This paper outlines the content of Perfect Fit and the protocol for evaluating its feasibility, acceptability, and preliminary effectiveness, the role of participant characteristics, and the study's feasibility. Methods A single-arm, mixed-method, real-world evaluation study will be conducted in the Netherlands. We aim to recruit 100 adult daily smokers intending to quit within 6 weeks. The personalized intervention will last approximately 16 weeks. Primary outcomes include Perfect Fit's feasibility and acceptability. Secondary outcomes are preliminary effectiveness and study feasibility, and we will measure participant characteristics. Quantitative data will be collected through questionnaires administered at baseline, post-intervention and 2, 6, and 12 months post-intervention. Qualitative data will be gathered via semi-structured interviews post-intervention. Data analysis will involve descriptive analyses, generalized linear mixed models (quantitative) and the Framework Approach (qualitative), integrating quantitative and qualitative data during interpretation. Conclusions This study will provide novel insight into the potential of interventions like Perfect Fit, as a multiple health behavior change strategy. Findings will inform further intervention development and help identify methods to foster feasibility and acceptability. Successful mHealth interventions with virtual coaches will prevent chronic diseases and promote public health.

Abstract The FRESHAIR4Life study aims to reduce the non-communicable disease (NCD) burden by implementing preventive interventions targeting adolescents’ exposure to tobacco use and air pollution (AP) worldwide. This paper presents the FRESHAIR4Life methodology and initial rapid review results. The rapid review, using various databases and PubMed, aimed to guide decision-making on risk factor focus, target areas, and populations. It showed variable NCD mortality rates related to tobacco use and AP across the participating countries, with tobacco as the main risk factor in the Kyrgyz Republic, Greece, and Romania, and AP prevailing in Pakistan and Uganda. Adolescent exposure levels, sources, and correlates varied. The study will continue with an in-depth situational analysis to guide the selection, adaptation, and integration of evidence-based interventions into the FRESHAIR4Life prevention package. This package will be implemented, evaluated, assessed for cost-effectiveness, and iteratively refined. The research places a strong emphasis on co-creation, capacity building, and comprehensive communication and dissemination.

IntroductioneHealth seems promising in addressing challenges in the provision of care for Huntington’s disease (HD) across Europe. By harnessing information and communication technologies, eHealth can partially relocate care from specialized centers to the patients’ home, thereby increasing the availability and accessibility of specialty care services beyond regional borders. Previous research on eHealth (development) in HD is however limited, especially when it comes to including eHealth services specifically designed together with HD gene expansion carriers (HDGECs) and their partners to fit their needs and expectations.MethodsThis article describes the qualitative human-centered design process and first evaluations of the Huntington Support App prototype: a web-app aimed to support the quality of life (QoL) of HDGECs and their partners in Europe. Prospective end-users, i.e., HDGECs, their partners, and healthcare providers (HCPs), from different countries were involved throughout the development process. Through interviews, we captured people’s experiences with the disease, quality of life (QoL), and eHealth. We translated their stories into design directions that were further co-designed and subsequently evaluated with the user groups.ResultsThe resulting prototype centralizes clear and reliable information on the disease, HD-related news and events, as well as direct contact possibilities with HCPs via an online walk-in hour or by scheduling an appointment. The app’s prototype was positively received and rated as (very) appealing, pleasant, easy to use and helpful by both HDGECs and partners.DiscussionBy involving end-users in every step, we developed a healthcare app that meets relevant needs of individuals affected by HD and therefore may lead to high adoption and retention rates. As a result, the app provides low-threshold access to reliable information and specialized care for HD in Europe. A description of the Huntington Support App as well as implications for further development of the app’s prototype are provided.

BackgroundMultiple sclerosis (MS) is a persistent inflammatory condition impacting the brain and spinal cord, affecting globally approximately 2.8 million individuals. Effective self-management plays a crucial role in the treatment of chronic diseases, including MS, significantly influencing health outcomes. A personal health record (PHR) is a promising tool to support self-management, potentially empowering patients and enhancing their engagement in treatment and health. Despite these promising aspects, challenges in implementation persist and PHRs are still a relatively new concept undergoing rapid development.ObjectiveThis study aimed to assess the feasibility and usability of the PHR. Secondary objectives included evaluating implementation determinants, and exploring preliminary effects on quality of care for both patients and healthcare professionals (HCPs), self-management, self-efficacy for patients, job satisfaction, efficiency, and demand for HCPs, and preliminary effects on costs and health-related quality of life.MethodsThis study had a mixed-methods design. Quantitative data of patients (n = 80) and HCPs (n = 12) were collected via self-reported questionnaires at baseline (T0), after one year (T1), and after two years (T2). One focus group interview was conducted at T2 with patients (n = 7), and another one with HCPs (n = 4), to get a more in-depth understanding of the feasibility and usability of the PHR via the Unified Theory of Acceptance and Use of Technology framework, and to further explore the secondary objectives in-depth.ResultsMost patients never logged in during the first year and logged in a couple of times per year during the second year, averaging around 15 min per log-in session. The HCPs mainly logged in a couple of times per year over the two years with an average use of six minutes per session. Patient usability and satisfaction scores were below average and moderate, respectively: with SUS-scores of 59.9 (SD = 14.2, n = 33) at T1 and 59.0 (SD = 16.3, n = 37) at T2, and CSQ-8 scores of 21.4 (SD = 5.0, n = 34) at T1, and 22.1 (SD = 5.0, n = 39) at T2. HCPs had similar usability and satisfaction scores. Multiple facilitators and barriers were identified by both patients and HCPs, such as (in)sufficient knowledge of how to use the PHR, lack of staff capacity and ICT obstacles. No significant differences were found in the preliminary effects. Qualitative data showed, among others, that both patients and HCPs saw the benefit of the PHR in terms of performance expectancy, by gaining more insight into health and health data, but challenges remained regarding effort expectancy, such as log-in issues and experiencing difficulties with information retrieval.ConclusionThe feasibility and usability were considered moderate by patients and HCPs; however, potential regarding the performance of the PHR was observed. Implementation challenges, such as the complexity of usage, lowered the adoption of the PHR. The evolving nature of PHRs requires ongoing evaluation and adaptation to optimize their potential benefits. Utilizing a participatory design approach and a dedicated implementation team could help in achieving this optimization, ultimately enhancing their adoption.

Abstract Background The Ask-Advise-Connect approach can help primary care providers to increase the number of smokers that attempt to quit smoking and enrol into cessation counselling. The approach has not yet been implemented in general practice in the Netherlands. The aim of this study was to investigate the influence of a comprehensive implementation strategy on the delivery of Ask-Advise-Connect for smoking cessation within Dutch general practice during the COVID-19 pandemic. Methods A pre-post study was conducted between late 2020 and early 2022, and included 106 Dutch primary care providers (GPs, practice nurses and doctor’s assistants). Participation lasted nine months: during the first three months participants delivered smoking cessation care as usual (pre-intervention); the implementation strategy came into effect after three months and participants were followed up for another six months (post-intervention). The implementation strategy consisted of two meetings in which participants were educated about Ask-Advise-Connect, made agreements on the implementation of Ask-Advise-Connect and reflected on these agreements. Participants also received online educational materials and a desk card as reminder. The changes in the proportions of ‘Ask’ and ‘Advise’ over time were modelled using linear mixed effects models. A descriptive analysis was conducted with regard to referrals to cessation counselling. Results Participants provided consultations to 29,112 patients (both smokers and non-smokers). Results of the linear mixed effects model show that the proportion of patients that were asked about smoking (‘Ask’) significantly decreased in the first three months (pre-intervention), but slightly increased again after the implementation strategy came into effect (post-intervention). No significant change over time was found with regard to the proportion of patients advised to quit smoking (‘Advise’). Descriptive statistics suggested that more participants proactively (vs. passively) referred patients to cessation counselling post-intervention (‘Connect’). Conclusions The findings indicate that a comprehensive implementation strategy can support primary care providers in offering smoking cessation care to patients, even under stressful COVID-19 conditions. Additional implementation efforts are needed to increase the proportion of patients that receive a quit advice and proactive referral.

Abstract Smart inhalers are electronic monitoring devices which are promising in increasing medication adherence and maintaining asthma control. A multi-stakeholder capacity and needs assessment is recommended prior to implementation in healthcare systems. This study aimed to explore perceptions of stakeholders and to identify anticipated facilitators and barriers associated with the implementation of smart digital inhalers in the Dutch healthcare system. Data were collected through focus group discussions with female patients with asthma (n = 9) and healthcare professionals (n = 7) and through individual semi-structured interviews with policy makers (n = 4) and smart inhaler developers (n = 4). Data were analysed using the Framework method. Five themes were identified: (i) perceived benefits, (ii) usability, (iii) feasibility, (iv) payment and reimbursement, and (v) data safety and ownership. In total, 14 barriers and 32 facilitators were found among all stakeholders. The results of this study could contribute to the design of a tailored implementation strategy for smart inhalers in daily practice.

Abstract Background The Ask-Advise-Connect (AAC) approach can help primary care providers to increase the number of people who attempt to quit smoking and enrol into cessation counselling. We implemented AAC in Dutch general practice during the COVID-19 pandemic. In this study we describe how AAC was received in Dutch general practice and assess which factors played a role in the implementation. Methods A mixed-methods approach was used to evaluate the implementation of AAC. Implementation took place between late 2020 and early 2022 among 106 Dutch primary care providers (general practitioners (GPs), practice nurses and doctor’s assistants). Quantitative and qualitative data were collected through four online questionnaires. A descriptive analysis was conducted on the quantitative data. The qualitative data (consisting of answers to open-ended questions) were inductively analysed using axial codes. The Consolidated Framework for Implementation Research was used to structure and interpret findings. Results During the study, most participants felt motivated (84–92%) and able (80–94%) to apply AAC. At the end of the study, most participants reported that the AAC approach is easy to apply (89%) and provides advantages (74%). Routine implementation of the approach was, however, experienced to be difficult. More GPs (30–48%) experienced barriers in the implementation compared to practice nurses and doctor’s assistants (7–9%). The qualitative analysis showed that especially external factors, such as a lack of time or priority to discuss smoking due to the COVID-19 pandemic, negatively influenced implementation of AAC. Conclusions Although AAC was mostly positively received in Dutch general practice, implementation turned out to be challenging, especially for GPs. Lack of time to discuss smoking was a major barrier in the implementation. Future efforts should focus on providing additional implementation support to GPs, for example with the use of e-health.

Abstract Background The digitalization of healthcare requires users to have sufficient competence in using digital health technologies. In the Netherlands, as well as in other countries, there is a need for a comprehensive, person-centered assessment of eHealth literacy to understand and address eHealth literacy related needs, to improve equitable uptake and use of digital health technologies. Objective We aimed to translate and culturally adapt the original eHealth Literacy Questionnaire (eHLQ) to Dutch and to collect initial validity evidence. Methods The eHLQ was translated using a systematic approach with forward translation, an item intent matrix, back translation, and consensus meetings with the developer. A validity-driven and multi-study approach was used to collect validity evidence on 1) test content, 2) response processes and 3) internal structure. Cognitive interviews (n = 14) were held to assess test content and response processes (Study 1). A pre-final eHLQ version was completed by 1650 people participating in an eHealth study (Study 2). A seven-factor Confirmatory Factor Analysis (CFA) model was fitted to the data to assess the internal structure of the eHLQ. Invariance testing was performed across gender, age, education and current diagnosis. Results Cognitive interviews showed some problems in wording, phrasing and resonance with individual’s world views. CFA demonstrated an equivalent internal structure to the hypothesized (original) eHLQ with acceptable fit indices. All items loaded substantially on their corresponding latent factors (range 0.51–0.81). The model was partially metric invariant across all subgroups. Comparison of scores between groups showed that people who were younger, higher educated and who had a current diagnosis generally scored higher across domains, however effect sizes were small. Data from both studies were triangulated, resulting in minor refinements to eight items and recommendations on use, score interpretation and reporting. Conclusion The Dutch version of the eHLQ showed strong properties for assessing eHealth literacy in the Dutch context. While ongoing collection of validity evidence is recommended, the evidence presented indicate that the eHLQ can be used by researchers, eHealth developers and policy makers to identify eHealth literacy needs and inform the development of eHealth interventions to ensure that people with limited digital access and skills are not left behind.

AbstractBackground Diagnostics are increasingly shifting to patients’ home environment, facilitated by new digital technologies. Digital diagnostics (diagnostic services enabled by digital technologies) can be a tool to better respond to the challenges faced by primary care systems while aligning with patients’ and healthcare professionals’ needs. However, it needs to be clarified how to determine the success of these interventions.Objectives We aim to provide practical guidance to facilitate the adequate development and implementation of digital diagnostics.Strategy Here, we propose the quadruple aim (better patient experiences, health outcomes and professional satisfaction at lower costs) as a framework to determine the contribution of digital diagnostics in primary care. Using this framework, we critically analyse the advantages and challenges of digital diagnostics in primary care using scientific literature and relevant casuistry.Results Two use cases address the development process and implementation in the Netherlands: a patient portal for reporting laboratory results and digital diagnostics as part of hybrid care, respectively. The third use case addresses digital diagnostics for sexually transmitted diseases from an international perspective.Conclusions We conclude that although evidence is gathering, the often-expected value of digital diagnostics needs adequate scientific evidence. We propose striving for evidence-based ‘responsible digital diagnostics’ (sustainable, ethically acceptable, and socially desirable digital diagnostics). Finally, we provide a set of conditions necessary to achieve it. The analysis and actionable guidance provided can improve the chance of success of digital diagnostics interventions and overall, the positive impact of this rapidly developing field.

AbstractBackground eHealth offers opportunities to improve health and healthcare systems and overcome primary care challenges in low-resource settings (LRS). LRS has been typically associated with low- and middle-income countries (LMIC), but they can be found in high-income countries (HIC) when human, physical or financial resources are constrained. Adopting a concept of LRS that applies to LMIC and HIC can facilitate knowledge interchange between eHealth initiatives while improving healthcare provision for socioeconomically disadvantaged groups across the globe.Objectives To outline the contributions and challenges of eHealth in low-resource primary care settings.Strategy We adopt a socio-ecological understanding of LRS, making LRS relevant to LMIC and HIC. To assess the potential of eHealth in primary care settings, we discuss four case studies according to the WHO ‘building blocks for strengthening healthcare systems’.Results and discussion The case studies illustrate eHealth’s potential to improve the provision of healthcare by i) improving the delivery of healthcare (using AI-generated chats); ii) supporting the workforce (using telemedicine platforms); iii) strengthening the healthcare information system (through patient-centred healthcare information systems), and iv) improving system-related elements of healthcare (through a mobile health financing platform). Nevertheless, we found that development and implementation are hindered by user-related, technical, financial, regulatory and evaluation challenges. We formulated six recommendations to help anticipate or overcome these challenges: 1) evaluate eHealth’s appropriateness, 2) know the end users, 3) establish evaluation methods, 4) prioritise the human component, 5) profit from collaborations, ensure sustainable financing and local ownership, 6) and contextualise and evaluate the implementation strategies.

Objective: To evaluate the implementation of a guideline-based, integrated, standardised, personal approach in patients with Chronic Obstructive Pulmonary Disease (COPD) or Asthma in a real-life situation. Methods: Patients at the outpatient clinic of the department of pulmonary disease were included in a controlled cohort study, comparing the use of diagnostic items and ‘Personalised care plans' (PCPs) in patients with obstructive lung disease before (2013) and after (2015) implementation of a personalised diagnostic pathway. Results were compared with reference data (2016) from two control hospitals that used the same guidelines but did not implement this pathway. Results: 100 patients were selected for all three cohorts. After implementing the diagnostic pathway in 2015, 35 % of patients visited attended all pre-planned appointments, whereas 65 % of patients did not: they were diagnosed using usual care. Factors contributing to patients not attending the diagnostic care pathway were: the logistical complexity and intensity of the 2-day pathway, patients willingness to participate in a personalised pathway, and low social economic status or low literacy. After the implementation of the pathway, a significant improvement was seen in the number of PCPs (P

Background Cervical screening could be an appropriate routine moment to provide female smokers with tailored stop smoking advice. In Dutch general practice, cervical smears are performed by practice assistants.Objectives This study was performed in preparation for a randomised trial to identify potential barriers and enablers for a brief stop smoking strategy performed by trained practice assistants after routine cervical screening.Methods Between December 2016 and March 2017 three focus group meetings were held with ten practice assistants, three nurses, and six general practitioners to explore their views and expectations towards the proposed approach. We analysed data using thematic analysis. Identified factors are presented within the framework of the Social-Ecological Model.Results Potential barriers and enablers were identified at individual, interpersonal, and workplace levels. Practice assistants, nurses and GPs did not consider assistants to have a role in stop smoking care. They believed it is feasible to register smoking status but had reservations towards providing advice by assistants, for which knowledge and skills are needed. Practice assistants’ own beliefs about smokers and smokers’ response to stop smoking advice might influence how assistants and smokers interact. An explanation of why advice is given could help, provided assistants have enough time and experience with the smear. The nurses’ availability and general practitioners’ view on prevention might affect the delivery of the strategy by the assistant.Conclusion At individual, interpersonal, and workplace levels, several factors could influence the provision of a stop smoking strategy by a practice assistant.

Abstract Objectives Little direction exists on how to effectively implement palliative care for patients with COPD. In the COMPASSION study, we developed, executed, and evaluated a multifaceted implementation strategy to improve the uptake of region-tailored palliative care intervention components into routine COPD care. We evaluated the implementation strategy and assessed the implementation process, barriers, and facilitators. Methods A mixed methods process evaluation was performed. Primary and secondary healthcare providers in four hospital regions in the Netherlands were trained. Patients identified during hospitalisation for an acute exacerbation received palliative care and were followed for a year. Various sources were used: process data, questionnaires including the End-of-life Professional Caregiver Survey (EPCS), medical records, monitoring meetings, and interviews. The Consolidated Framework of Implementation Research (CFIR) was used to categorize implementation determinants. Results The training sessions with roleplay were positively evaluated and increased professionals’ self-efficacy in providing palliative care statistically significantly. Of 98 patients identified, 44 (44.9%) received one or more palliative care conversations at the outpatient clinic. Having those conversations was highly valued by healthcare providers because it led to clarity and peace of mind for the patient and higher job satisfaction. Coordination and continuity remained suboptimal. Most important barriers to implementation were time constraints, the COVID-19 pandemic, and barriers related to transmural and interdisciplinary collaboration. Facilitators were the systematic screening of patients for palliative care needs, adapting to the patient’s readiness, conducting palliative care conversations with a pulmonologist and a COPD nurse together, and meeting regularly with a small team led by a dedicated implementation leader. Conclusions Providing integrated palliative care for patients with COPD is highly valued by healthcare providers but remains challenging. Our findings will guide future implementation efforts. Future research should focus on how to optimize transmural and interdisciplinary collaboration. Trial registration The COMPASSION study is registered in the Netherlands Trial Register (NTR): NL7644. Registration date: 07/04/2019.

Background: Recently, Professor Chunxue Bai and colleagues have proposed a definition of the Metaverse in Medicine as the medical Internet of Things (MIoT) facilitated using AR and/or VR glasses. Methods: A multi-disciplinary panel of doctors and IT experts from Asia, the United States, and Europe analyzed published articles regarding expert consensus on the Medical Internet of Things, with reference to study results in the field of metaverse technology. Findings: It is feasible to implement the three basic functions of the MIoT, namely, comprehensive perception, reliable transmission, and intelligent processing, by applying a metaverse platform, which is composed of AR and VR glasses and the MIoT system, and integrated with the technologies of holographic construction, holographic emulation, virtuality-reality integration, and virtuality-reality interconnection. In other words, through interactions between virtual and real cloud experts and terminal doctors, we will be able to carry out medical education, science popularization, consultation, graded diagnosis and treatment, clinical research, and even comprehensive healthcare in the metaverse. The interaction between virtual and real cloud experts and terminal users (including terminal doctors, patients, and even their family members) could also facilitate different medical services, such as disease prevention, healthcare, physical examination, diagnosis and treatment of diseases, rehabilitation, management of chronic diseases, in-home care, first aid, outpatient attendance, consultation, etc. In addition, it is noteworthy that security is a prerequisite for the Metaverse in Medicine, and a reliable security system is the foundation to ensure the normal operation of such a platform. Conclusion: The application of a Cloud Plus Terminal platform could enable interaction between virtual and real cloud experts and terminal doctors, in order to realize medical education, science popularization, consultation, graded diagnosis and treatment, clinical research, and even comprehensive healthcare in the metaverse.

Background: Digital mental healthcare interventions (DMHIs) have been repeatedly mentioned as a possible solution for the growing demand for accessible treatment for patients suffering from common mental health problems, i.e. depression and anxiety disorders. However, structural implementation of DMHI is sparse and results on outcome seems inconclusive. To enrich the body of evidence, this paper compares a need-driven digital mental healthcare intervention (DMHI) for patients diagnosed with depression or anxiety disorders with traditional face-to-face treatment. The digital treatment is provided using a smartphone app which provides videoconferencing, chat, calendar- and registration functions. Method: In a naturalistic retrospective cohort study patients who received DMHI are compared to patients who received traditional face-to-face treatment. Furthermore three illustrative cases were selected to demonstrate how personalization is expressed in individual treatments. Results: The first results of the DMHI compare favorably with traditional face-to-face treatment, showing comparable satisfaction rates, equal effectiveness, and a significant decrease in treatment duration in weeks. Conclusion: The DMHI has the potential to be as effective, but more efficient than traditional face-to-face treatment. Furthermore the digital treatment opens up options to fine-tune the frequency, duration, and content of care contacts to align with patients' individual situations and personal preferences.

Abstract Background Kidney failure and dialysis treatment have a large impact on a patient’s life. Patients experience numerous, complex symptoms and usually have multiple comorbid conditions. Despite the multitude of problems, patients often have priorities for improvement of specific aspects of their functioning, which would be helpful for clinicians to become informed of. This highlights a clear need for patient-centered care in this particular patient group, with routine screening as a vital element to timely recognize symptoms and tailored treatment to match individual patients’ needs and priorities. By also providing feedback on patient’s screening results to the patient itself, the patient is empowered to actively take control in one’s mostly uncontrollable disease process. The current paper describes the study design of a multicenter randomized controlled trial evaluating the effectiveness of the “E-HEealth treatment in Long-term Dialysis” (E-HELD) intervention. This therapist-guided Internet-based cognitive-behavioral therapy (ICBT) intervention is focused on and personalized to the myriad of problems that dialysis patients experience and prioritize. Methods After a screening procedure on adjustment problems, 130 eligible dialysis patients will be randomized to care as usual or the E-HELD intervention. Patients will complete questionnaires on distress (primary outcome measure), several domains of functioning (e.g., physical, psychological, social), potential predictors and mediators of treatment success, and the cost-effectiveness of the intervention, at baseline, 6-month follow-up, and 12-month follow-up. In addition, to take account of the personalized character of the intervention, the Personalized Priority and Progress Questionnaire (PPPQ) will be administered which is a personalized instrument to identify, prioritize, and monitor individual problems over time. Discussion The present study design will provide insight in the effectiveness of tailored ICBT in patients with kidney failure who are treated with dialysis. When proven effective, the screening procedure and the subsequent ICBT intervention could be implemented in routine care to detect, support, and treat patients struggling with adjustment problems. Trial registration NL63422.058.17 [Registry ID: METC-LDD] NL7160 [Netherlands Trial Register; registered on 16 July 2018]

Abstract Inhaled medication is essential to control asthma and COPD, but availability and proper adherence are challenges in low-middle income countries (LMIC). Data on medication availability and adherence in Central Asia are lacking. We aimed to investigate the availability of respiratory medication and the extent of financially driven non-adherence in patients with COPD and asthma in Kyrgyzstan. A cross-sectional study was conducted in two regions of Kyrgyzstan. Patients with a physician- and spirometry confirmed diagnosis of asthma and/or COPD were included. The main outcomes were (1) availability of respiratory medication in hospitals and pharmacies, assessed by a survey, and (2) medication adherence, assessed by the Test of Adherence to Inhalers (TAI). Logistic regression analyses were used to identify predictors for adherence. Of the 300 participants (COPD: 264; asthma: 36), 68.9% were buying respiratory medication out-of-pocket. Of all patients visiting the hospital, almost half reported medication not being available. In pharmacies, this was 8%. Poor adherence prevailed over intermediate and good adherence (80.7% vs. 12.0% and 7.3%, respectively). Deliberate and erratic non-adherence behavior patterns were the most frequent (89.7% and 88.0%), followed by an unconscious non-adherent behavioral pattern (31.3%). In total, 68.3% reported a financial reason as a barrier to proper adherence. Low BMI was the only factor significantly associated with good adherence. In this LMIC population, poor medication availability was common and 80% were poorly adherent. Erratic and deliberate non-adherent behaviors were the most common pattern and financial barriers play a role in over two-thirds of the population.

BackgroundMedical procedures can cause considerable stress and anxiety among children. Current interventions mainly diminish stress and anxiety during procedures, while stress and anxiety often build up at home. Moreover, interventions often focus on either distraction or preparation. eHealth can combine multiple strategies and provide a low-cost solution that can be used outside the hospital.ObjectiveTo develop an eHealth solution to diminish preprocedural stress and anxiety, and to evaluate the app on use, usability and user experience in practice. We also aimed to gain in-depth insights in children's and caregivers' opinions and experiences to inform future improvements.MethodsThis is a multi-study report on the development (Study 1) and evaluation (Study 2) of a first version of the developed app. In study 1 we adopted a participatory design approach in which children's experiences were central to the design process. We performed an experience journey session with stakeholders (n = 13) to map the child's outpatient journey, identify pains and gains, and formulate the desired experience journey. Iterative development and testing with children (n = 8) and caregivers (n = 6) resulted in a working prototype. The prototype was tested with children, resulting in a first version of the Hospital Hero app. The app was evaluated on use, user-experience and usability during an eight-week pilot study in practice (Study 2). We triangulated data from online interviews with children and caregivers (n = 21) and online questionnaires (n = 46).ResultsMultiple stress and anxiety experience touchpoints were identified. The Hospital Hero app supports children in their hospital journey by facilitating preparation at home and providing distraction at the hospital. The pilot study showed that the app was evaluated positively on usability and user-experience and is considered feasible. Qualitative data showed five themes: (1) user-friendliness, (2) coherence and power of storytelling, (3) motivation and reward, (4) fit with real hospital journey, (5) procedural comfort.DiscussionUsing participatory design, we developed a child-centered solution that supports children in the entire hospital journey and may diminish preprocedural stress and anxiety. Future efforts should create a more tailored journey, define an optimal engagement window and formulate implementation strategies.

Abstract Background Implementation of digital health (eHealth) generally involves adapting pre-established and carefully considered processes or routines, and still raises multiple ethical and legal dilemmas. This study aimed to identify challenges regarding responsibility and liability when prescribing digital health in clinical practice. This was part of an overarching project aiming to explore the most pressing ethical and legal obstacles regarding the implementation and adoption of digital health in the Netherlands, and to propose actionable solutions. Methods A series of multidisciplinary focus groups with stakeholders who have relevant digital health expertise were analysed through thematic analysis. Results The emerging general theme was ‘uncertainty regarding responsibilities’ when adopting digital health. Key dilemmas take place in clinical settings and within the doctor-patient relationship (‘professional digital health’). This context is particularly challenging because different stakeholders interact. In the absence of appropriate legal frameworks and codes of conduct tailored to digital health, physicians’ responsibility is to be found in their general duty of care. In other words: to do what is best for patients (not causing harm and doing good). Professional organisations could take a leading role to provide more clarity with respect to physicians’ responsibility, by developing guidance describing physicians’ duty of care in the context of digital health, and to address the resulting responsibilities. Conclusions Although legal frameworks governing medical practice describe core ethical principles, rights and obligations of physicians, they do not suffice to clarify their responsibilities in the setting of professional digital health. Here we present a series of recommendations to provide more clarity in this respect, offering the opportunity to improve quality of care and patients’ health. The recommendations can be used as a starting point to develop professional guidance and have the potential to be adapted to other healthcare professionals and systems.

Abstract While the opportunities of ML and AI in healthcare are promising, the growth of complex data-driven prediction models requires careful quality and applicability assessment before they are applied and disseminated in daily practice. This scoping review aimed to identify actionable guidance for those closely involved in AI-based prediction model (AIPM) development, evaluation and implementation including software engineers, data scientists, and healthcare professionals and to identify potential gaps in this guidance. We performed a scoping review of the relevant literature providing guidance or quality criteria regarding the development, evaluation, and implementation of AIPMs using a comprehensive multi-stage screening strategy. PubMed, Web of Science, and the ACM Digital Library were searched, and AI experts were consulted. Topics were extracted from the identified literature and summarized across the six phases at the core of this review: (1) data preparation, (2) AIPM development, (3) AIPM validation, (4) software development, (5) AIPM impact assessment, and (6) AIPM implementation into daily healthcare practice. From 2683 unique hits, 72 relevant guidance documents were identified. Substantial guidance was found for data preparation, AIPM development and AIPM validation (phases 1–3), while later phases clearly have received less attention (software development, impact assessment and implementation) in the scientific literature. The six phases of the AIPM development, evaluation and implementation cycle provide a framework for responsible introduction of AI-based prediction models in healthcare. Additional domain and technology specific research may be necessary and more practical experience with implementing AIPMs is needed to support further guidance.

Abstract Background Dutch standard diabetes care is generally protocol-driven. However, considering that general practices wish to tailor diabetes care to individual patients and encourage self-management, particularly in light of current COVID-19 related constraints, protocols and other barriers may hinder implementation. The impact of dispensing with protocol and implementation of self-management interventions on patient monitoring and experiences are not known. This study aims to evaluate tailoring of care by understanding experiences of well-organised practices 1) when dispensing with protocol; 2) determining the key conditions for successful implementation of self-management interventions; and furthermore exploring patients’ experiences regarding dispensing with protocol and self-management interventions. Methods in this mixed-methods prospective study, practices (n = 49) were invited to participate if they met protocol-related quality targets, and their adult patients with well-controlled type 2 diabetes were invited if they had received protocol-based diabetes care for a minimum of 1 year. For practices, study participation consisted of the opportunity to deliver protocol-free diabetes care, with selection and implementation of self-management interventions. For patients, study participation provided exposure to protocol-free diabetes care and self-management interventions. Qualitative outcomes (practices: 5 focus groups, 2 individual interviews) included experiences of dispensing with protocol and the implementation process of self-management interventions, operationalised as implementation fidelity. Quantitative outcomes (patients: routine registry data, surveys) consisted of diabetes monitoring completeness, satisfaction, wellbeing and health status at baseline and follow-up (24 months). Results Qualitative: In participating practices (n = 4), dispensing with protocol encouraged reflection on tailored care and selection of various self-management interventions A focus on patient preferences, team collaboration and intervention feasibility was associated with high implementation fidelity Quantitative: In patients (n = 126), likelihood of complete monitoring decreased significantly after two years (OR 0.2 (95% CI 0.1–0.5), p

Abstract Background Smoking is more prevalent and persistent among lower socio-economic status (SES) compared with higher-SES groups, and contributes greatly to SES-based health inequities. Few interventions exist that effectively help lower-SES smokers quit. This study evaluated “De StopCoach”, a mobile phone delivered eHealth intervention targeted at lower-SES smokers based on the evidence-based StopAdvisor, in a real-world setting (five municipalities) in The Netherlands in 2019–2020. Method We conducted individual semi-structured interviews with project leaders, healthcare professionals, and participating smokers (N = 22), and examined log data from the app (N = 235). For practical reasons, SES of app users was not measured. Qualitative data were analysed using the Framework Approach, with the Consolidated Framework for Implementation Research (CFIR) and Unified Theory of Acceptance and Use of Technology (UTAUT) as theoretical models. Results Qualitative data showed that factors from the Intervention and Setting domains were most important for the implementation. StopCoach seemed suitable for lower-SES smokers in terms of performance and effort expectancy, especially when integrated with regular smoking cessation counseling (SCC). Key barriers to implementation of the app were limited integration of the app in SCC programs in practice, difficulty experienced by project leaders and healthcare professionals to engage the local community, and barriers to SCC more generally (e.g., perceived resistance to quitting in patients) that prevented healthcare professionals from offering the app to smokers. Quantitative data showed that 48% of app users continued using the app after the preparation phase and pre-quit day, and that 33% of app users had attempted to quit. Both app adherence and quit attempts were more likely if smokers also received SCC from a professional coach. Posthoc analyses suggest that adherence is related to higher likelihood of a quit attempt among participants with and without a professional coach. Conclusions Smokers, healthcare professionals and project leaders indicated in the interviews that the StopCoach app would work best when combined with SCC. It also appears from app log that app adherence and quit attempts by app users can be facilitated by combining the app with face-to-face SCC. As such, blended care appears promising for helping individual smokers quit, as it combines the best of regular SCC and eHealth. Further research on blended care for lower-SES smokers is needed.

Abstract Background Few European smokers receive professional counselling when attempting to quit smoking, resulting in suboptimal success rates and poor health outcomes. Healthcare providers in general practice play an important role in referring smokers to smoking cessation counselling. We chose the Netherlands as a case study to qualitatively explore which factors play a role among healthcare providers in general practice with regard to referral for smoking cessation counselling organised both inside and outside general practice. Methods We conducted four focus groups and 18 telephone interviews, with a total of 31 healthcare providers who work in general practice. Qualitative content analysis was used to identify relevant factors related to referral behaviours, and each factor was linked to one of the three main components of the COM-B behaviour model (i.e., capability, opportunity and motivation) as well as the six sub-components of the model. Results Dutch healthcare providers in general practice typically refer smokers who want to quit to counselling inside their own general practice without actively discussing other counselling options, indicating a lack of shared decision making. The analysis showed that factors linked to the COM-B main components ‘capability’ and ‘opportunity’, such as healthcare providers’ skills and patients’ preferences, play a role in whether patients are referred to counselling inside general practice. Factors linked to all three COM-B components were found to play a role in referrals to counselling outside general practice. These included (knowledge of) the availability and quality of counselling in the region, patients’ requests, reimbursement, and sense of urgency to refer. The identified factors can both act as barriers and facilitators. Conclusions The findings of this research suggest that more smokers can be reached with smoking cessation counselling if implementation interventions focus on: (i) equipping healthcare providers with the knowledge and skills needed to refer patients; (ii) creating more opportunities for healthcare providers to refer patients (e.g., by improving the availability and reimbursement of counselling options); and (iii) motivating healthcare providers to discuss different counselling options with patients.

Abstract Background Ehealth platforms, since the outbreak of COVID-19 more important than ever, can support self-management in patients with Chronic Obstructive Pulmonary Disease (COPD). The aim of this observational study is to explore the impact of healthcare professional involvement on the adherence of patients to an eHealth platform. We evaluated the usage of an eHealth platform by patients who used the platform individually compared with patients in a blended setting, where healthcare professionals were involved. Methods In this observational cohort study, log data from September 2011 until January 2018 were extracted from the eHealth platform Curavista. Patients with COPD who completed at least one Clinical COPD Questionnaire (CCQ) were included for analyses (n = 299). In 57% (n = 171) of the patients, the eHealth platform was used in a blended setting, either in hospital (n = 128) or primary care (n = 29). To compare usage of the platform between patients who used the platform independently or with a healthcare professional, we applied propensity score matching and performed adjusted Poisson regression analysis on CCQ-submission rate. Results Using the eHealth platform in a blended setting was associated with a 3.25 higher CCQ-submission rate compared to patients using the eHealth platform independently. Within the blended setting, the CCQ-submission rate was 1.83 higher in the hospital care group than in the primary care group. Conclusion It is shown that COPD patients used the platform more frequently in a blended care setting compared to patients who used the eHealth platform independently, adjusted for age, sex and disease burden. Blended care seems essential for adherence to eHealth programs in COPD, which in turn may improve self-management.

Background: University Hospitals (UHs) are key players in contributing to a sustainable health care system. In the Netherlands the eight UHs joined forces from 2016 till 2018 within the Citrien fund (CF) – program eHealth to develop sustainable eHealth solutions by carrying out 32 research projects. Objective: The objective of this study was to develop an evaluation study protocol that would be capable of evaluating the first Dutch University Hospitals eHealth program in depth. Methods: To develop the protocol three consecutive steps were carried out: 1) a rapid review to find suitable eHealth evaluation frameworks and eHealth project progress indicators, 2) assessment of the selected eHealth evaluation frameworks to determine the most suitable framework to evaluate CF - program eHealth, and 3) development of a mixed-methods study to evaluate eHealth project progress indicators in relation to the 32 eHealth research projects. Results: The ‘Commonwealth Scientific and Industrial Research Organization (CSIRO) framework for evaluating telehealth trials or programs’ was deemed most suitable for evaluating CF - program eHealth. The aspects planning, needs assessment, policy/organization, technology, ethics, legal, and finance, were considered useful indicators for monitoring the progress of an eHealth project, and therefore incorporated into the survey. Conclusion: The developed evaluation study protocol will be used to evaluate the first Dutch University Hospitals’ eHealth program, the CF – program eHealth, and therewith contribute to maximizing successful uptake of eHealth solutions. Also, the selected set of eHealth project performance indicators could be used by researchers or policymakers to securely monitor the progress of eHealth projects.

Introduction: In hospital care, urinary catheters are frequently used, causing a substantial risk for catheter-associated urinary tract infections (CAUTI). Patient awareness and evaluation of appropriateness of their catheter through mHealth could decrease these healthcare-associated infections. However, patient engagement via mHealth in infection prevention is still limited. Therefore, we describe the systematic development and usability evaluation of the mHealth intervention Participatient, to prevent CAUTI, aiming for optimal adoption of the app in the clinical setting. Method: The CeHRes roadmap was used as development guideline, operationalizing phases for (1) contextual inquiry (observations and interviews), (2) value specification (interviews with probing) and (3) design in multiple steps and in co-creation with end-users. During phases 1 and 2, semi-structured interviews were conducted with fifteen patients and three nurses. The design phase was combined with the minimum viable product development strategy, with a focus on early cyclic steps of prototyping. Results: In phase 1, patients acknowledged the risks of catheter use. Patients in phase 2 valued endorsement of a mHealth application by healthcare workers and reported to own a smartphone. Both patients and nurses recognized the need for useful modules in the app besides catheter care. Based on the needs and values as found in phase 2, the Participation app was developed. Based on usability tests in phase 3, content, text size, plain language, and navigation structures were further amended, and images were added. Conclusion: This study provides real-world insight in the developmental strategy for mHealth interventions by involving both patients and care providers. Development of an app using thorough needs-assessment provided understanding for its content and design. By developing an app providing patients with reliable information and daily checklists, we aim to provide a tailored tool for communication and awareness on catheter use for the whole ward, and a potential blueprint for mHealth development.

Introduction: The burden of chronic diseases has continued to grow globally. Technology has been used successfully in the management of chronic conditions through diagnosis, monitoring and education. This review aims to collate available evidence to evaluate the role of short message services (SMS), as an intervention, in patient participation in disease management of three common chronic diseases, i.e., Human Immunodeficiency Virus (HIV), Diabetes Mellitus (DM) and Chronic Obstructive Pulmonary Disease (COPD). Materials and method: The review identified eight eligible studies in PubMed, Google Scholar and Cochrane library that assessed the effect of SMS interventions on self-management in HIV, DM and COPD. Outcomes of interest included adherence to the self-management plan, lifestyle modification (e.g., exercise and diet), clinical outcomes (e.g body mass index, blood glucose level, blood pressure), knowledge of disease, feasibility, acceptability, usability, and cost-effectiveness. Results: Adherence, knowledge about their disease conditions, and feasibility/acceptability were assessed in eight, six and three studies, respectively. Improvements from pre- to post-intervention in adherence and clinical outcomes (including body mass index and blood glucose level) were recorded in eight and three studies. Patients reported having knowledge about their conditions and were willing to continue with the intervention (patient acceptability and usability). However, some patients complained they could not send response messages either due to technical issues or forgetfulness and no analysis of cost-effectiveness. Conclusion: Chronic conditions require long-term care and patients can be active participants in their care plan to improve their health. SMS interventions have been used successfully to encourage patient self-management, patient awareness, and treatment adherence in HIV, COPD, and DM. The SMS intervention has been applied in various research designs and disease conditions. Patients’ adherence and clinical conditions changed from pre- to post-intervention; however, more research is needed to elucidate the effect of SMS interventions in different countries, socioeconomic status and age groups, and chronic diseases.

Background Given the pressure on modern healthcare systems, eHealth can offer valuable opportunities. However, understanding the potential and challenges of eHealth in daily practice can be challenging for many general practitioners (GPs) and their staff. Objectives To critically appraise five widely used eHealth applications, in relation to safe, evidence-based and high-quality eHealth. Using these applications as examples, we aim to increase understanding of eHealth among GPs and highlight the opportunities and challenges presented by eHealth. Discussion eHealth applications can support patients while increasing efficiency for GPs. A three-way division (inform, monitor, track; interaction; data utilisation) characterises many eHealth applications, with an increasing degree of complexity depending on the domain. All applications provide information and some have extra functionalities that promote interaction, while data analysis and artificial intelligence may be applied to support or (fully) automate care processes. Applications in the inform domain are relatively easy to use and implement but their impact on clinical outcomes may be limited. More demanding applications, in terms of privacy and ethical aspects, are found in the data utilisation domain and may potentially have a more significant impact on care processes and patient outcomes. When selecting and implementing eHealth applications, we recommend that GPs remain critical regarding preconditions on safe, evidence-based and high-quality eHealth, particularly in the case of more complex applications in the data utilisation domain.

Background eHealth promises to increase self-management and personalised medicine and improve cost-effectiveness in primary care. Paired with these promises are ethical implications, as eHealth will affect patients’ and primary care professionals’ (PCPs) experiences, values, norms, and relationships. Objectives We argue what ethical implications related to the impact of eHealth on four vital aspects of primary care could (and should) be anticipated. Discussion (1) EHealth influences dealing with predictive and diagnostic uncertainty. Machine-learning based clinical decision support systems offer (seemingly) objective, quantified, and personalised outcomes. However, they also introduce new loci of uncertainty and subjectivity. The decision-making process becomes opaque, and algorithms can be invalid, biased, or even discriminatory. This has implications for professional responsibilities and judgments, justice, autonomy, and trust. (2) EHealth affects the roles and responsibilities of patients because it can stimulate self-management and autonomy. However, autonomy can also be compromised, e.g. in cases of persuasive technologies and eHealth can increase existing health disparities. (3) The delegation of tasks to a network of technologies and stakeholders requires attention for responsibility gaps and new responsibilities. (4) The triangulate relationship: patient–eHealth–PCP requires a reconsideration of the role of human interaction and ‘humanness’ in primary care as well as of shaping Shared Decision Making. Conclusion Our analysis is an essential first step towards setting up a dedicated ethics research agenda that should be examined in parallel to the development and implementation of eHealth. The ultimate goal is to inspire the development of practice-specific ethical recommendations.

Background Education is essential to the integration of eHealth into primary care, but eHealth is not yet embedded in medical education. Objectives In this opinion article, we aim to support organisers of Continuing Professional Development (CPD) and teachers delivering medical vocational training by providing recommendations for eHealth education. First, we describe what is required to help primary care professionals and trainees learn about eHealth. Second, we elaborate on how eHealth education might be provided. Discussion We consider four essential topics. First, an understanding of existing evidence-based eHealth applications and conditions for successful development and implementation. Second, required digital competencies of providers and patients. Third, how eHealth changes patient-provider and provider-provider relationships and finally, understanding the handling of digital data. Educational activities to address these topics include eLearning, blended learning, courses, simulation exercises, real-life practice, supervision and reflection, role modelling and community of practice learning. More specifically, a CanMEDS framework aimed at defining curriculum learning goals can support eHealth education by describing roles and required competencies. Alternatively, Kern’s conceptual model can be used to design eHealth training programmes that match the educational needs of the stakeholders using eHealth. Conclusion Vocational and CPD training in General Practice needs to build on eHealth capabilities now. We strongly advise the incorporation of eHealth education into vocational training and CPD activities, rather than providing it as a separate single module. How learning goals and activities take shape and how competencies are evaluated clearly requires further practice, evaluation and study.

Background The implementation of eHealth applications in primary care remains challenging. Enhancing knowledge and awareness of implementation determinants is critical to build evidence-based implementation strategies and optimise uptake and sustainability. Objectives We consider how evidence-based implementation strategies can be built to support eHealth implementation. Discussion What implementation strategies to consider depends on (potential) barriers and facilitators to eHealth implementation in a given situation. Therefore, we first discuss key barriers and facilitators following the five domains of the Consolidated Framework for Implementation Research (CFIR). Cost is identified as a critical barrier to eHealth implementation. Privacy, security problems, and a lack of recognised standards for eHealth applications also hinder implementation. Engagement of key stakeholders in the implementation process, planning the implementation of the intervention, and the availability of training and support are important facilitators. To support care professionals and researchers, we provide a stepwise approach to develop and apply evidence-based implementation strategies for eHealth in primary care. It includes the following steps: (1) specify the eHealth application, (2) define problem, (3) specify desired implementation behaviour, and (4) choose and (5) evaluate the implementation strategy. To improve the fit of the implementation strategy with the setting, the stepwise approach considers the phase of the implementation process and the specific context. Conclusion Applying an approach, as provided here, may help to improve the implementation of eHealth applications in primary care.

Abstract Background Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional’s self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care. Trial registration Netherlands Trial Register (NTR): NL7644 . Registration date: April 7, 2019.

Abstract Background The cluster randomized controlled trial on (cost-)effectiveness of integrated chronic obstructive pulmonary disease (COPD) management in primary care (RECODE) showed that integrated disease management (IDM) in primary care had no effect on quality of life (QOL) in COPD patients compared with usual care (guideline-supported non-programmatic care). It is possible that only a subset of COPD patients in primary care benefit from IDM. We therefore examined which patients benefit from IDM, and whether patient characteristics predict clinical improvement over time. Method Post-hoc analyses of the RECODE trial among 1086 COPD patients. Logistic regression analyses were performed with baseline characteristics as predictors to examine determinants of improvement in QOL, defined as a minimal decline in Clinical COPD Questionnaire (CCQ) of 0.4 points after 12 and 24 months of IDM. We also performed moderation analyses to examine whether predictors of clinical improvement differed between IDM and usual care. Results Regardless of treatment type, more severe dyspnea (MRC) was the most important predictor of clinically improved QOL at 12 and 24 months, suggesting that these patients have most room for improvement. Clinical improvement with IDM was associated with female gender (12-months) and being younger (24-months), and improvement with usual care was associated with having a depression (24-months). Conclusions More severe dyspnea is a key predictor of improved QOL in COPD patients over time. More research is needed to replicate patient characteristics associated with clinical improvement with IDM, such that IDM programs can be offered to patients that benefit the most, and can potentially be adjusted to meet the needs of other patient groups as well. Trial registration Netherlands Trial Register, NTR2268 . Registered 31 March 2010.

BackgroundThe global burden of chronic respiratory diseases (CRDs) disproportionally affects Roma populations. Health interventions addressing CRD among Roma or other vulnerable groups often fail to be effective, as their implementation strategy misaligns with the local context. To design context-driven strategies, we studied CRD-related beliefs, perceptions, and behaviors among a Greek Roma population, focussing on asthma and COPD.MethodsFor this qualitative study in Crete, Greece, we used a Rapid Assessment Process. We conducted interviews and focus groups with purposively selected Roma community members (CMs), key informants (KIs) and healthcare professionals (HPs) serving the population. Data were triangulated using observations of households and clinical consultations. Key themes were identified using Thematic Content Analysis. The Health Belief Model, the Explanatory Model of Illness, and the Theory of Planned Behavior that are complementary is some aspects, guided our methodology with the several variables from them to be integrated to better understand CRD risk preventative behavior.ResultsWe conducted six focus groups, seven interviews and 13 observations among 15 CMs, four KIs, and three HPs. Five themes emerged: (1) Poor CRD-awareness (smoking and household air pollution were perceived as harmful, but almost exclusively associated with acute rather than chronic symptoms); (2) Low perceived susceptibility to CRD (and CMs tended to ignore respiratory symptoms); (3) High risk exposure (smoking was common, and air pollution was perceived inevitable due to financial constraints); (4) Healthcare seeking (healthcare was sought only for persistent, severe symptoms, daily needs were a priority); (5) Perceived barriers/facilitators to care (health illiteracy, perceived discrimination and financial constraints were main barriers; established trust the main facilitator).ConclusionThese five themes highlight that strategies to tackle CRD in the studied Roma setting require a multilevel approach: bridging awareness gaps at the population level, providing resources to enhance the adoption of healthy behaviors, and fighting discrimination at the societal level, whilst establishing trusted relationships at the local level. Similar methodologies to address local context may strengthen the implementation of effective interventions for similarly vulnerable and/or low-resource populations.

A number of recent studies have found low percentages of smokers among COVID-19 patients, causing scientists to conclude that smokers may be protected against SARS-CoV-2 infection. National and international media were interested in this story and we soon began receiving questions about this topic in general practice. In this article, we shed light on the process that resulted in the misinterpretation of observational research by scientists and the media. We also point out the methodological flaws of various studies on which hasty conclusions were based. Finally, we address the role of primary healthcare providers in mitigating the consequences of erroneous claims about a protective effect of smoking.

Physical inactivity is already present among patients with chronic obstructive pulmonary disease (COPD) of mild or moderate airflow obstruction. Most previous studies that reported on determinants of physical activity in COPD included patients with severe COPD. Therefore, the aim of this study was to explore which patient characteristics were related with physical activity in COPD patients with mild or moderate airflow obstruction. Cross-sectional analyses were performed on patients selected from the population-based Netherlands Epidemiology of Obesity study. Patients were included if they had a physician-diagnosed COPD GOLD 0-2 or had newly diagnosed COPD GOLD 1-2. Physical activity was evaluated using the Short Questionnaire to Assess Health-Enhancing Physical Activity (SQUASH) questionnaire and reported in hours per week of metabolic equivalents (MET-h/week). Associations between sociodemographic, lifestyle, clinical and functional characteristics were examined using regression analysis. 323 patients were included in research (77 with physician-diagnosed and 246 with newly diagnosed COPD). We found that physical activity was positively associated with pulmonary function: FEV1 (regression coefficient 0.40 (95% CI 0.09,0.71)) and FVC (regression coefficient 0.34 (95% CI 0.06,0.61)). Physical activity was associated with anxiety (regression coefficient =0.9 (95% CI 0.3,1.6)) only for physician-diagnosed patients. Lung function and anxiety level determine level of physical activity among COPD patients with mild or moderate airflow obstruction. Thus, integrating it into the physical activity plans could help to increase physical activity level of the patients.

Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home.Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts.Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD.

Physical activity (PA) is important for maintaining good physical health. WHO recommends 150 min of PA per week to the older population but many older people do not meet this recommendation. The increasing use of mobile technology among elderly provides an opportunity to increase PA. This systematic review was aimed at the usability, acceptability and effectiveness of mHealth (including smartphone, mobile phone, tablet apps, mobile text messages) to increase PA in older people above the age of 55. A literature search related to mHealth, PA and older people was conducted in PubMed, Embase, Web of science and COCHRANE library. The search generated 829 articles, after the screening of articles and reference lists, ten studies were included in the review. Included studies were diverse in the aspects of study design, intervention mode, duration, frequency of reminders and assessment measures. The results of this review indicated that mHealth interventions with motivational back up may be usable, acceptable and beneficial for the maintenance and improvement of PA in the short term. However, the findings are inconclusive about the difference in effectiveness between simple (mobile text message) and complex mHealth interventions (app monitoring with sensors), the optimal frequency for activity reminders and on the long term effectiveness of mHealth.

Early recognition of COPD exacerbations and prompt treatment could reduce recovery time, hospitalization risk and improve quality of life. We aimed to assess whether education of patients and healthcare providers could reduce the time between onset of COPD exacerbation symptoms and patient presentation in primary care. All the patients who were included in this REDUX pilot study received specific education about exacerbation management and a personalized action plan. Additional training about exacerbation management and training in how to educate patients was offered to the general practitioners and primary care nurses who were not experienced in giving this education. They received the REducing Delay through edUcation on eXacerbations (REDUX) training session, focusing on early recognition and treatment of COPD exacerbation symptoms. Outcomes were assessed of each patients exacerbation course before and after they received REDUX education. This included: (1) delay between exacerbation onset and recognition, (2) delay between recognition and action, (3) delay between recognition and consultation of GP. Wilcoxon Signed Rank tests were performed for the outcomes on delay. A total of 36 patients (female: 58%; mean age 70 [SD: 10.0]; mean FEV1%predicted: 51.3 [SD: 19.0]) were included. REDUX shortened days between onset of an exacerbation and recognition (from 7.7 to 2.9 days; mean gain: 4.8 days) [SD: 5.6], days between recognition and action (from 12.1 to 2.8 days; mean gain: 9.3 days) [SD: 10.5] and days between recognition and GP visit (from 11.5 to 3.2 days; mean gain: 8.3 days [SD: 11.2] (i.e. 72% decrease). The main reasons patients gave for the delay were “confusion with common cold” (68%), “don’t want to bother GP” (56%) and “trying to avoid oral steroids” (44%). We estimated that if REDUX could reduce hospital-treated COPD exacerbation recovery time by 2 days, Dutch national scale-up of REDUX could potentially save up to 33 million euros. Parallel, but apart from the REDUX study, the questions about the delay outcomes were included in a digital app for measurement of disease burden. This app was freely accessible during our REDUX study in the regular app stores as a support tool for self-management. Unfortunately, the fact that it was freely available meant that there was no check on the app's entered data. The data provided by the developer of the application showed that there were extreme differences in the days that were entered, and that it was not clear if the app was used by patients or healthcare providers who wanted to test the app. Therefore the results of the app were not usable for additional analysis to support our research. In conclusion the REDUX pilot program could successfully reduce the time between COPD exacerbation onset and patient presentation in primary care. Larger studies are required to confirm clinical effectiveness and cost-effectiveness both for the paper version of the program as for the digital application.

Introduction: Self-management is important in asthma control. Self-management in adolescents is complicated by physical and psychological developmental transitions, which may result in undertreated, potentially life-threatening asthma. It is unclear which interventions fit adolescents’ needs and improve asthma-related outcomes. This systematic review therefore aimed to identify eHealth interventions that effectively support self-management skills in adolescents with asthma and evaluate the underlying psychological theory. Methods: PubMed, Embase, Web of Science, Cochrane Library and PsycINFO were used. Quality of articles was assessed with validated checklists (i.e., STROBE and CONSORT). eHealth only and blended self-management interventions were reported, including underlying psychological theory (if any), features, usability and effects on outcomes (i.e., self-management, knowledge, self-efficacy, asthma control, quality of life, pulmonary function, medication adherence and healthcare visits). Adolescents’ opinions about eHealth and needs for features were reviewed. Results: 25 empirical (quantitative and qualitative) articles were included, representing nineteen eHealth interventions of which four were blended (i.e. combining eHealth and face-to-face contact) and seven were theory-based. Adolescents found the applications and websites easy to use and were positive about eHealth. The studies showed positive effects of the interventions or no differences on self-management, knowledge, self-efficacy, asthma control, quality of life, pulmonary function, medication adherence and healthcare visits. No publications were found that showed negative results of eHealth programmes. Adolescents were positive about self-monitoring, reminder functions and the possibility to share information with others. Adolescents’ needs for future applications included asthma education, gamification and customisation. Given unclarity about operationalizations of underlying theories and small sample sized in blended care interventions, respectively, this review could not assess whether a theoretical basis or blended mode of delivery was related to effectiveness. Conclusion: eHealth interventions seem safe and outcomes are promising, with several studies showing positive effects on asthma control, quality of life and medication adherence, no adverse outcomes were reported. Results suggest that eHealth interventions may be further improved by increasingly tailoring them to adolescents’ needs, such as self-monitoring, reminder functions and the possibility to share information with others. Therefore, physicians can consider using eHealth in daily practice in this patient group, as stand-alone intervention or as blended care.

Background: Heart failure and chronic obstructive pulmonary disease (COPD) are leading causes of disability and lead to substantial healthcare costs. The aim of this study was to evaluate the effectiveness of home telemonitoring in reducing healthcare usage and costs in patients with heart failure or COPD. Methods: The study was a retrospective observational study with a follow-up duration of up to 3 years in which for all participants data before and after enrollment in the telemonitoring program was compared. Hundred seventy-seven patients with heart failure (NYHA functional class 3 or 4) and 83 patients with COPD (GOLD stage 3 or 4) enrolled in a home telemonitoring program in addition to receiving usual hospital care. The primary outcome was the number of hospitalizations; the secondary outcomes were total number of hospitalization days and healthcare costs during the follow-up period. Generalized Estimating Equations were applied to account for repeated measurements, adjusting for sex, age and length of follow-up. Results: In heart failure patients, after initiation of home telemonitoring both the number of hospitalizations and the total number of hospitalization days significantly decreased (incidence rate ratio of 0.35 (95% CI: 0.26–0.48) and 0.35 (95% CI: 0.24–0.51), respectively), as did the total healthcare costs (exp(B) = 0.11 (95% CI: 0.08–0.17)), all p

Abstract Background Low-resource settings are disproportionally burdened by chronic lung disease due to early childhood disadvantages and indoor/outdoor air pollution. However, data on the socioeconomic impact of respiratory diseases in these settings are largely lacking. Therefore, we aimed to estimate the chronic lung disease-related socioeconomic burden in diverse low-resource settings across the globe. To inform governmental and health policy, we focused on work productivity and activity impairment and its modifiable clinical and environmental risk factors. Methods We performed a cross-sectional, observational FRESH AIR study in Uganda, Vietnam, Kyrgyzstan, and Greece. We assessed the chronic lung disease-related socioeconomic burden using validated questionnaires among spirometry-diagnosed COPD and/or asthma patients (total N = 1040). Predictors for a higher burden were studied using multivariable linear regression models including demographics (e.g. age, gender), health parameters (breathlessness, comorbidities), and risk factors for chronic lung disease (smoking, solid fuel use). We applied identical models per country, which we subsequently meta-analyzed. Results Employed patients reported a median [IQR] overall work impairment due to chronic lung disease of 30% [1.8–51.7] and decreased productivity (presenteeism) of 20.0% [0.0–40.0]. Remarkably, work time missed (absenteeism) was 0.0% [0.0–16.7]. The total population reported 40.0% [20.0–60.0] impairment in daily activities. Breathlessness severity (MRC-scale) (B = 8.92, 95%CI = 7.47–10.36), smoking (B = 5.97, 95%CI = 1.73–10.22), and solid fuel use (B = 3.94, 95%CI = 0.56–7.31) were potentially modifiable risk factors for impairment. Conclusions In low-resource settings, chronic lung disease-related absenteeism is relatively low compared to the substantial presenteeism and activity impairment. Possibly, given the lack of social security systems, relatively few people take days off work at the expense of decreased productivity. Breathlessness (MRC-score), smoking, and solid fuel use are potentially modifiable predictors for higher impairment. Results warrant increased awareness, preventive actions and clinical management of lung diseases in low-resource settings from health policymakers and healthcare workers.

Primary care is challenged to provide high quality, accessible and affordable care for an increasingly ageing, complex, and multimorbid population. To counter these challenges, primary care professionals need to take up new and innovative practices, including eHealth. eHealth applications hold the promise to overcome some difficulties encountered in the care of people with complex medical and social needs in primary care. However, many unanswered questions regarding (cost) effectiveness, integration with healthcare, and acceptability to patients, caregivers, and professionals remain to be elucidated. What conditions need to be met? What challenges need to be overcome? What downsides must be dealt with? This first paper in a series on eHealth in primary care introduces basic concepts and examines opportunities for the uptake of eHealth in primary care. We illustrate that although the potential of eHealth in primary care is high, several conditions need to be met to ensure that safe and high-quality eHealth is developed for and implemented in primary care. eHealth research needs to be optimized; ensuring evidence-based eHealth is available. Blended care, i.e. combining face-to-face care with remote options, personalized to the individual patient should be considered. Stakeholders need to be involved in the development and implementation of eHealth via co-creation processes, and design should be mindful of vulnerable groups and eHealth illiteracy. Furthermore, a global perspective on eHealth should be adopted, and eHealth ethics, patients’ safety and privacy considered.

Abstract Background Integrated disease management with self-management for Chronic Obstructive Pulmonary Disease (COPD) is effective to improve clinical outcomes. eHealth can improve patients’ involvement to be able to accept and maintain a healthier lifestyle. Eventhough there is mixed evidence of the impact of eHealth on quality of life (QoL) in different settings. Aim The primary aim of the e-Vita-COPD-study was to investigate the effect of use of eHealth patient platforms on disease specific QoL of COPD patients. Methods We evaluated the impact of an eHealth platform on disease specific QoL measured with the clinical COPD questionnaire (CCQ), including subscales of symptoms, functional state and mental state. Interrupted time series (ITS) design was used to collect CCQ data at multiple time points. Multilevel linear regression modelling was used to compare trends in CCQ before and after the intervention. Results Of 742 invited COPD patients, 244 signed informed consent. For the analyses, we only included patients who actually used the eHealth platform (n = 123). The decrease of CCQ-symptoms was 0.20% before the intervention and 0.27% after the intervention; this difference in slopes was statistically significant (P = 0.027). The decrease of CCQ-mental was 0.97% before the intervention and after the intervention there was an increase of 0.017%; this difference was statistically significant (P = 0.01). No significant difference was found in the slopes of CCQ (P = 0.12) and CCQ-function (P = 0.11) before and after the intervention. Conclusion The e-Vita eHealth platform had a potential beneficial impact on the CCQ-symptoms of COPD patients, but not on functional state. The CCQ-mental state remained stable after the intervention, but this was a deterioration compared to the improving situation before the start of the eHealth platform. Therefore, health care providers should be aware that, although symptoms improve, there might be a slight increase in anxiety and depression after introducing an eHealth intervention to support self-management. Trial registration Our study is registered in the Dutch Trial Register (national registration of clinical trails, mandatory for publication) with number NTR4098 and can be found at http://www.trialregister.nl/trial/3936. Date registered: 2013-07-31. First participant: 2014-01-01.

Low socioeconomic status (SES) is associated with a higher prevalence of unhealthy lifestyles compared to a high SES. Health interventions that promote a healthy lifestyle, like eHealth solutions, face limited adoption in low SES groups. To improve the adoption of eHealth interventions, their alignment with the target group's attitudes is crucial. This study investigated the attitudes of people with a low SES toward health, healthcare, and eHealth. We adopted a mixed-method community-based participatory research approach with 23 members of a community center in a low SES neighborhood in the city of Rotterdam, the Netherlands. We conducted a first set of interviews and analyzed these using a grounded theory approach resulting in a group of themes. These basic themes' representative value was validated and refined by an online questionnaire involving a different sample of 43 participants from multiple community centers in the same neighborhood. We executed three focus groups to validate and contextualize the results. We identified two general attitudes based on nine profiles toward health, healthcare, and eHealth. The first general attitude, optimistically engaged, embodied approximately half our sample and involved light-heartedness toward health, loyalty toward healthcare, and eagerness to adopt eHealth. The second general attitude, doubtfully disadvantaged, represented roughly a quarter of our sample and was related to feeling encumbered toward health, feeling disadvantaged within healthcare, and hesitance toward eHealth adoption. The resulting attitudes strengthen the knowledge of the motivation and behavior of people with low SES regarding their health. Our results indicate that negative health attitudes are not as evident as often claimed. Nevertheless, intervention developers should still be mindful of differentiating life situations, motivations, healthcare needs, and eHealth expectations. Based on our findings, we recommend eHealth should fit into the person's daily life, ensure personal communication, be perceived usable and useful, adapt its communication to literacy level and life situation, allow for meaningful self-monitoring and embody self-efficacy enhancing strategies.