Taking shared decision making for prostate cancer to the next level: Requirements for a Dutch treatment decision aid with personalized risks on side effects.

Background: Different curative treatment modalities need to be considered in case of localized prostate cancer, all comparable in terms of survival and recurrence though different in side effects. To better inform patients and support shared decision making, the development of a web-based patient decision aid including personalized risk information was proposed. This paper reports on requirements in terms of content of information, visualization of risk profiles, and use in practice. Methods: Based on a Dutch 10-step guide about the setup of a decision aid next to a practice guideline, an iterative and co-creative design process was followed. In collaboration with various groups of experts (health professionals, usability and linguistic experts, patients and the general public), research and development activities were continuously alternated. Results: Content requirements focused on presenting information only about conventional treatments and main side effects; based on risk group; and including clear explanations about personalized risks. Visual requirements involved presenting general and personalized risks separately; through bar charts or icon arrays; and along with numbers or words, and legends. Organizational requirements included integration into local clinical pathways; agreement about information input and output; and focus on patients' numeracy and graph literacy skills. Conclusions: The iterative and co-creative development process was challenging, though extremely valuable. The translation of requirements resulted in a decision aid about four conventional treatment options, including general or personalized risks for erection, urinary and intestinal problems that are communicated with icon arrays and numbers. Future implementation and validation studies need to inform about use and value in practice.

Factors That Influence the Use of Electronic Diaries in Health Care: Scoping Review.

BACKGROUND: A large number of people suffer from psychosocial or physical problems. Adequate strategies to alleviate needs are scarce or lacking. Symptom variation can offer insights into personal profiles of coping and resilience (detailed functional analyses). Hence, diaries are used to report mood and behavior occurring in daily life. To reduce inaccuracies, biases, and noncompliance with paper diaries, a shift to electronic diaries has occurred. Although these diaries are increasingly used in health care, information is lacking about what determines their use. OBJECTIVE: The aim of this study was to map the existing empirical knowledge and gaps concerning factors that influence the use of electronic diaries, defined as repeated recording of psychosocial or physical data lasting at least one week using a smartphone or a computer, in health care. METHODS: A scoping review of the literature published between January 2000 and December 2018 was conducted using queries in PubMed and PsycInfo databases. English or Dutch publications based on empirical data about factors that influence the use of electronic diaries for psychosocial or physical purposes in health care were included. Both databases were screened, and findings were summarized using a directed content analysis organized by the Consolidated Framework for Implementation Research (CFIR). RESULTS: Out of 3170 articles, 22 studies were selected for qualitative synthesis. Eleven themes were determined in the CFIR categories of intervention, user characteristics, and process. No information was found for the CFIR categories inner (eg, organizational resources, innovation climate) and outer (eg, external policies and incentives, pressure from competitors) settings. Reminders, attractive designs, tailored and clear data visualizations (intervention), smartphone experience, and intrinsic motivation to change behavior (user characteristics) could influence the use of electronic diaries. During the implementation process, attention should be paid to both theoretical and practical training. CONCLUSIONS: Design aspects, user characteristics, and training and instructions determine the use of electronic diaries in health care. It is remarkable that there were no empirical data about factors related to embedding electronic diaries in daily clinical practice. More research is needed to better understand influencing factors for optimal electronic diary use.

Implementing Experience Sampling Technology for Functional Analysis in Family Medicine - A Design Thinking Approach.

BACKGROUND: A paradigm shift in health care from illness to wellbeing requires new assessment technologies and intervention strategies. Self-monitoring tools based on the Experience Sampling Method (ESM) might provide a solution. They enable patients to monitor both vulnerability and resilience in daily life. Although ESM solutions are extensively used in research, a translation from science into daily clinical practice is needed. OBJECTIVE: To investigate the redesign process of an existing platform for ESM data collection for detailed functional analysis and disease management used by psychological assistants to the general practitioner (PAGPs) in family medicine. METHODS: The experience-sampling platform was reconceptualized according to the design thinking framework in three phases. PAGPs were closely involved in co-creation sessions. In the 'understand' phase, knowledge about end-users' characteristics and current eHealth use was collected (nominal group technique - 2 sessions with N = 15). In the 'explore' phase, the key needs concerning the platform content and functionalities were evaluated and prioritized (empathy mapping - 1 session with N = 5, moderated user testing - 1 session with N = 4). In the 'materialize' phase, the adjusted version of the platform was tested in daily clinical practice (4 months with N = 4). The whole process was extensively logged, analyzed using content analysis, and discussed with an interprofessional project group. RESULTS: In the 'understand' phase, PAGPs emphasized the variability in symptoms reported by patients. Therefore, moment-to-moment assessment of mood and behavior in a daily life context could be valuable. In the 'explore' phase, (motivational) functionalities, technological performance and instructions turned out to be important user requirements and could be improved. In the 'materialize' phase, PAGPs encountered barriers to implement the experience-sampling platform. They were insufficiently facilitated by the regional primary care group and general practitioners. CONCLUSION: The redesign process in co-creation yielded meaningful insights into the needs, desires and daily routines in family medicine. Severe barriers were encountered related to the use and uptake of the experience-sampling platform in settings where health care professionals lack the time, knowledge and skills. Future research should focus on the applicability of this platform in family medicine and incorporate patient experiences.

Co-creative development of an eHealth nursing intervention: Self-management support for outpatients with cancer pain.

INTRODUCTION: Co-creative methods, having an iterative character and including different perspectives, allow for the development of complex nursing interventions. Information about the development process is essential in providing justification for the ultimate intervention and crucial in interpreting the outcomes of subsequent evaluations. This paper describes a co-creative method directed towards the development of an eHealth intervention delivered by registered nurses to support self-management in outpatients with cancer pain. METHODS: Intervention development was divided into three consecutive phases (exploration of context, specification of content, organisation of care). In each phase, researchers and technicians addressed five iterative steps: research, ideas, prototyping, evaluation, and documentation. Health professionals and patients were consulted during research and evaluation steps. RESULTS: Collaboration of researchers, health professionals, patients and technicians was positive and valuable in optimising outcomes. The intervention includes a mobile application for patients and a web application for nurses. Patients are requested to monitor pain, adverse effects and medication intake, while being provided with graphical feedback, education and contact possibilities. Nurses monitor data, advise patients, and collaborate with the treating physician. CONCLUSION: Integration of patient self-management and professional care by means of eHealth key into well-known barriers and seem promising in improving cancer pain follow-up. Nurses are able to make substantial contributions because of their expertise, focus on daily living, and their bridging function between patients and health professionals in different care settings. Insights from the intervention development as well as the intervention content give thought for applications in different patients and care settings.

Feasibility of a mobile and web-based intervention to support self-management in outpatients with cancer pain.

PURPOSE: Cancer pain is a prevalent and distressing symptom. To enhance self-management in outpatients, a multi-component intervention was developed, integrating patient self-management and professional care through healthcare technology. This article describes feasibility of the intervention in everyday practice. METHOD: Patients with moderate to severe cancer pain (n = 11) and registered nurses specialized in pain and palliative care (n = 3) participated in a four-week study. The intervention involved daily monitoring, graphical feedback, education, and advice by means of a mobile application for patients and a web application for nurses. Learnability, usability and desirability were measured in patients with a 20-item questionnaire (1-5 scale), higher scores indicating better feasibility. Patients' adherence was based on completion rates from server logs. Single semi-structured interviews with patients and a focus group interview with nurses provided insight into experiences. RESULTS: Questionnaire findings confirmed learnability (4.8), usability (4.8) and desirability (4.6) of the application for patients. Average completion rates were 76.8% for pain monitoring, 50.4% for medication monitoring and 100% for education sessions. Interviews revealed that patients were pleased with the simplicity of the mobile application and appreciated different components. Nurses agreed upon the added value and were mostly positive about the possibilities of the web application. Patients and nurses provided ideas for improvements relating to the content and technical performance of the intervention. CONCLUSIONS: Study results demonstrate feasibility of the intervention in everyday practice. Provided that content-related and technical adjustments are made, the intervention enables patients with cancer pain to practice self-management and nurses to remotely support these patients.

Update on Prevalence of Pain in Patients With Cancer: Systematic Review and Meta-Analysis.

CONTEXT: Cancer pain has a severe impact on quality of life and is associated with numerous psychosocial responses. Recent studies suggest that treatment of cancer pain has improved during the last decade. OBJECTIVES: The aim of this review was to examine the present status of pain prevalence and pain severity in patients with cancer. METHODS: A systematic search of the literature published between September 2005 and January 2014 was performed using the databases PubMed, Medline, Embase, CINAHL, and Cochrane. Articles in English or Dutch that reported on the prevalence of cancer pain in an adult population were included. Titles and abstracts were screened by two authors independently, after which full texts were evaluated and assessed on methodological quality. Study details and pain characteristics were extracted from the articles with adequate study quality. Prevalence rates were pooled with meta-analysis; meta-regression was performed to explore determinants of pain prevalence. RESULTS: Of 4117 titles, 122 studies were selected for the meta-analyses on pain (117 studies, n = 63,533) and pain severity (52 studies, n = 32,261). Pain prevalence rates were 39.3% after curative treatment; 55.0% during anticancer treatment; and 66.4% in advanced, metastatic, or terminal disease. Moderate to severe pain (numerical rating scale score ≥5) was reported by 38.0% of all patients. CONCLUSION: Despite increased attention on assessment and management, pain continues to be a prevalent symptom in patients with cancer. In the upcoming decade, we need to overcome barriers toward effective pain treatment and develop and implement interventions to optimally manage pain in patients with cancer.

Self-management support intervention to control cancer pain in the outpatient setting: a randomized controlled trial study protocol.

BACKGROUND: Pain is a prevalent and distressing symptom in patients with cancer, having an enormous impact on functioning and quality of life. Fragmentation of care, inadequate pain communication, and reluctance towards pain medication contribute to difficulties in optimizing outcomes. Integration of patient self-management and professional care by means of healthcare technology provides new opportunities in the outpatient setting. METHODS/DESIGN: This study protocol outlines a two-armed multicenter randomized controlled trial that compares a technology based multicomponent self-management support intervention with care as usual and includes an effect, economic and process evaluation. Patients will be recruited consecutively via the outpatient oncology clinics and inpatient oncology wards of one academic hospital and one regional hospital in the south of the Netherlands. Irrespective of the stage of disease, patients are eligible when they are diagnosed with cancer and have uncontrolled moderate to severe cancer (treatment) related pain defined as NRS≥4 for more than two weeks. Randomization (1:1) will assign patients to either the intervention or control group; patients in the intervention group receive self-management support and patients in the control group receive care as usual. The intervention will be delivered by registered nurses specialized in pain and palliative care. Important components include monitoring of pain, adverse effects and medication as well as graphical feedback, education, and nurse support. Effect measurements for both groups will be carried out with questionnaires at baseline (T0), after 4 weeks (T1) and after 12 weeks (T2). Pain intensity and quality of life are the primary outcomes. Secondary outcomes include self-efficacy, knowledge, anxiety, depression and pain medication use. The final questionnaire contains also questions for the economic evaluation that includes both cost-effectiveness and cost-utility analysis. Data for the process evaluation will be gathered continuously over the study period and focus on recruitment, reach, dose delivered and dose received. DISCUSSION: The proposed study will provide insight into the effectiveness of the self-management support intervention delivered by nurses to outpatients with uncontrolled cancer pain. Study findings will be used to empower patients and health professionals to improve cancer pain control. TRIAL REGISTRATION: NCT02333968 December 29, 2014.

Experiences of multidisciplinary development team members during user-centered design of telecare products and services: a qualitative study.

BACKGROUND: User-centered design (UCD) methodologies can help take the needs and requirements of potential end-users into account during the development of innovative telecare products and services. Understanding how members of multidisciplinary development teams experience the UCD process might help to gain insight into factors that members with different backgrounds consider critical during the development of telecare products and services. OBJECTIVE: The primary objective of this study was to explore how members of multidisciplinary development teams experienced the UCD process of telecare products and services. The secondary objective was to identify differences and similarities in the barriers and facilitators they experienced. METHODS: Twenty-five members of multidisciplinary development teams of four Research and Development (R&D) projects participated in this study. The R&D projects aimed to develop telecare products and services that can support self-management in elderly people or patients with chronic conditions. Seven participants were representatives of end-users (elderly persons or patients with chronic conditions), three were professional end-users (geriatrician and nurses), five were engineers, four were managers (of R&D companies or engineering teams), and six were researchers. All participants were interviewed by a researcher who was not part of their own development team. The following topics were discussed during the interviews: (1) aim of the project, (2) role of the participant, (3) experiences during the development process, (4) points of improvement, and (5) what the project meant to the participant. RESULTS: Experiences of participants related to the following themes: (1) creating a development team, (2) expectations regarding responsibilities and roles, (3) translating user requirements into technical requirements, (4) technical challenges, (5) evaluation of developed products and services, and (6) valorization. Multidisciplinary team members from different backgrounds often reported similar experienced barriers (eg, different members of the development team speak a "different language") and facilitators (eg, team members should voice expectations at the start of the project to prevent miscommunication at a later stage). However, some experienced barriers and facilitators were reported only by certain groups of participants. For example, only managers reported the experience that having different ideas about what a good business case is within one development team was a barrier, whereas only end-users emphasized the facilitating role of project management in end-user participation and the importance of continuous feedback from researchers on input of end-users. CONCLUSIONS: Many similarities seem to exist between the experienced barriers and facilitators of members of multidisciplinary development teams during UCD of telecare products and services. However, differences in experiences between team members from various backgrounds exist as well. Insights into these similarities and differences can improve understanding between team members from different backgrounds, which can optimize collaboration during the development of telecare products and services.