Erik Taal

BACKGROUND Stroke aftercare often leaves patients with unmet needs that can negatively affect their well-being and recovery. Providing right care at the right time and place is essential during the transition from hospital to home. The STROKE eCoach is a new mHealth self-management mobile application, designed to support this transition by offering personalized care through health information, symptom self-monitoring, and communication with healthcare providers. OBJECTIVE This study assessed the acceptability and usability of stroke aftercare with the STROKE eCoach from the perspectives of patients, informal caregivers, and healthcare providers. METHODS Using a mixed-methods approach: acceptability was assessed quantitatively through discontinuation rates, adherence rates, and a satisfaction questionnaire; usability was explored qualitatively based on four themes - technical functionality, ease of use, ability to meet patient needs, and enhancement of standard aftercare - discussed in focus groups and individual interviews. RESULTS Acceptability was assessed in 189 patients of whom n = 7 (3.7% ) discontinued app use due to the chosen technology. Adherence was high with 154 participants (82%) completing the recommended usage time. Satisfaction was moderate. Regarding usability, patients (n = 9), informal caregivers (n = 3), and healthcare providers (n = 5) participated. Four key themes emerged: patient-centred care, health information, care coordination and support, practical and technical considerations. CONCLUSIONS The STROKE eCoach was generally well-accepted by a large group of patients, usability findings provided ideas for future improvements. Next steps involve exploring the (cost-)effectiveness of the STROKE eCoach and the role of informal caregivers in the aftercare process.

Purpose: Goal was to establish whether an intervention that aims to increase goal management competencies is effective in decreasing elevated levels of depressive symptoms and increasing well-being in patients with polyarthritis. Materials and methods: Eighty-five persons with polyarthritis and elevated levels of depressive symptoms participated in the goal management intervention consisting of six group-based meetings. A quasiexperimental design with baseline measurement, follow-up at 6 months and a reference group of 151 patients from an observational study was applied. Primary outcome was depression; secondary outcomes were anxiety, purpose in life, positive affect, satisfaction with participation, goal management strategies, and arthritis self-efficacy. A linear mixed model procedure was applied to evaluate changes in outcomes. Results: No improvement was found for depressive symptoms and no changes were found for the secondary outcomes, except for positive affect that improved in the intervention group. This increase was mediated by an increase in goal adjustment. Furthermore, goal maintenance decreased and self-efficacy for other symptoms increased in the intervention group. Conclusion: This study indicates that interventions designed to aid patients with arthritis with goal management skills are potentially helpful for increasing positive affect, although further studies are needed.

For patients with chronic pain conditions such as rheumatoid arthritis (RA), who experience elevated levels of distress, tailored guided internet-based cognitive-behavioral treatment may be effective in improving psychological and physical functioning, and reducing the impact of RA on daily life. A multicenter, randomized controlled trial was conducted for RA patients with elevated levels of distress as assessed by a disease-specific measure. The control group (n=71) received standard care and the intervention group (n = 62) additionally received an internet-based tailored cognitive-behavioral intervention. Main analyses were performed using a linear mixed model estimating differences between the intervention and control groups in scores of psychological functioning, physical functioning, and impact of RA on daily life at preassesment and postassessment, and at 3, 6, 9, and 12 months. Patients who received the internet-based intervention reported a larger improvement in psychological functioning compared with the control group, indicating less depressed mood (P < 0.001, d = 0.54), negative mood (P = 0.01, d = 0.38), and anxiety (P < 0.001, d = 0.48) during the course of the 1-year follow-up period. Regarding physical functioning, a trend was found for the intervention group reporting less fatigue than the control group (P = 0.06, d= 0.24), whereas no effect was found on pain. No effects were found for the impact of RA on daily life, except for the intervention group experiencing fewer role limitations due to emotional problems (P < 0.001, d = 0.53). Offering guided internet-based cognitive-behavioral therapy is a promising development to aid patients with psychological distress particularly in improving psychological functioning. Further research on adherence and specific intervention ingredients is warranted.

Increasing physical activity in patients with severe mental illness is believed to have positive effects on physical health, psychiatric symptoms and as well quality of life. Till now, little is known about the relationship between physical activity and quality of life in long-term hospitalized patients with severe mental illness and knowledge of the determinants of behavioural change is lacking. The purpose of this study was to elucidate the relationship between objectively measured physical activity and quality of life, and explore modifiable psychological determinants of change in physical activity in long-term hospitalized patients with severe mental illness. In 184 inpatients, physical activity was measured using an accelerometer (ActiGraph GTX+). Quality of life was assessed by EuroQol-5D and WHOQol-Bref. Attitude and perceived self-efficacy towards physical activity were collected using the Physical Activity Enjoyment Scale and the Multidimensional Self Efficacy Questionnaire, respectively. Patient and disease characteristics were derived retrospectively from electronic patient records. Associations and potential predictors were analysed using hierarchical regression. Physical activity was positively related with and a predictor of all quality of life outcomes except on the environmental domain, independent of patient and disease characteristics. However, non-linear relationships showed that most improvement in quality of life lies in the change from sedentary to light activity. Attitude and self-efficacy were not related to physical activity. Physical activity is positively associated with quality of life, especially for patients in the lower spectrum of physical activity. An association between attitude and self-efficacy and physical activity was absent. Therefore, results suggest the need of alternative, more integrated and (peer-)supported interventions to structurally improve physical activity in this inpatient population. Slight changes from sedentary behaviour to physical activity may be enough to improve quality of life.

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

According to international guidelines, treatment of inflammatory arthritis should be based on a shared decision between patient and rheumatologist. Furthermore, patients with inflammatory arthritis have high need of information and want to be more actively involved in medical decision-making. To facilitate shared decision-making and support patients in choosing between disease modifying anti-rheumatic drugs (DMARDs), a web-based patient decision aid (PtDA) was developed. This study evaluated use, appreciation and effect of this PtDA. A post-test only study with a historical comparison group was conducted. In a two-year period, all patients diagnosed with rheumatoid arthritis, psoriatic arthritis or ankylosing spondylitis, who were deciding whether to start a (different) DMARD were invited to participate. In the first year, patients received standard information (comparison group). In the second year, patients were referred to the PtDA (intervention group). In both groups, a questionnaire was sent four weeks after consulting the rheumatologist. Patient characteristics included sociodemographic, health-related and preference-related variables. Process measures were for use and appraisal of the PtDA (intervention group only). The primary outcome measure was patients’ perceived role in medical decision-making. Secondary outcome measures comprised satisfaction with the decision-making process and the decision, beliefs about medication, adherence to medication and trust in the physician. We received 158/232 questionnaires (68 %) from the comparison group and 123/200 (61 %) from the intervention group. The PtDA was used by 69/123 patients (57 %) in the intervention group. Patients who used the PtDA highly appreciated it and perceived it as easy to use and helpful. Relative to the comparison group, patients in the intervention group perceived a more active role in medical decision-making and decisions were more in line with patients’ personal preferences. Other outcomes showed no significant difference between the two groups. The web-based PtDA was highly appreciated and perceived as helpful for decision-making. Implementation of the PtDA in rheumatology practice was associated with a significantly larger proportion of patients perceiving an active role in medical decision-making and decisions were more in line with patients’ personal preferences. The PtDA can be a valuable aid in improving patient participation in decision-making about DMARDs.

Process evaluations of newly developed interventions are necessary to identify effective and less effective intervention components. First aim of this study was to identify key components of a psychosocial goal management intervention from the perspective of participants, and second aim was to evaluate the intervention’s fidelity. A mixed-methods approach was applied to 24 interviews with participants post-intervention and 16 audio recordings of random training sessions. Participants experienced three key components: (1) the content, in which specific exercises helped to raise awareness and (intention to) change goal management behaviour, (2) person-focused approach, specifically, the nurse as trainer and personal fit of the approach, and (3) social mechanisms, including facilitating group processes and interpersonal processes. Adherence to the protocol by the trainers was high, while differences were found in the degree to which they were able to apply the intended collaborative approach and psychological communication skills. The applied design provided valuable insights into the processes that took place. Both the effects experienced by participants in relationship to the content, approach and social mechanisms as well as the strengths and weaknesses found with regard to fidelity provide insights that can inform the development and implementation of person-focused interventions.

Usually priorities in goal management—intended to minimize discrepancies between a given and desired situation—are studied as person characteristics, neglecting possible domain-specific aspects. However, people may make different decisions in different situations depending on the importance of the personal issues at stake. Aim of the present study therefore was to develop arthritis-related vignettes to examine domain-specific goal management and to explore patients’ preferences. Based on interviews and literature, situation-specific hypothetical stories were developed in which the main character encounters a problem with a valued goal due to arthritis. Thirty-one patients (61 % female, mean age 60 years) evaluated the face validity of the newly developed vignettes. Secondly, 262 patients (60 % female, mean age 63 years) were asked to come up with possible solutions for the problems with attaining a goal described in a subset of the vignettes. Goal management strategies within the responses and the preference for the various strategies were identified. The 11 developed vignettes in three domains were found to be face-valid. In 90 % of the responses, goal management strategies were identified (31 % goal maintenance, 29 % goal adjustment, 21 % goal disengagement, and 10 % goal re-engagement). Strategy preference was related to domains. Solutions containing goal disengagement were the least preferred. Using vignettes for measuring domain-specific goal management appears as valuable addition to the existing questionnaires. The vignettes can be used to study how patients with arthritis cope with threatened goals in specific domains from a patient’s perspective. Domain-specific strategy preference emphasizes the importance of a situation-specific instrument.

This paper demonstrates the mechanism of a multidimensional computerized adaptive test (CAT) to measure fatigue in patients with rheumatoid arthritis (RA). A CAT can be used to precisely measure patient-reported outcomes at an individual level as items are consequentially selected based on the patient’s previous answers. The item bank of the CAT Fatigue RA has been developed from the patients’ perspective and consists of 196 items pertaining to three fatigue dimensions: severity, impact and variability of fatigue. The CAT Fatigue RA was completed by fifteen patients. To test the CAT’s working mechanism, we applied the flowchart-check-method. The adaptive item selection procedure for each patient was checked by the researchers. The estimated fatigue levels and the measurement precision per dimension were illustrated with the selected items, answers and flowcharts. The CAT Fatigue RA selected all items in a logical sequence and those items were selected which provided the most information about the patient’s individual fatigue. Flowcharts further illustrated that the CAT reached a satisfactory measurement precision, with less than 20 items, on the dimensions severity and impact and to somewhat lesser extent also for the dimension variability. Patients’ fatigue scores varied across the three dimensions; sometimes severity scored highest, other times impact or variability. The CAT’s ability to display different fatigue experiences can improve communication in daily clinical practice, guide interventions, and facilitate research into possible predictors of fatigue. The results indicate that the CAT Fatigue RA measures precise and comprehensive. Once it is examined in more detail in a consecutive, elaborate validation study, the CAT will be available for implementation in daily clinical practice and for research purposes.