The high standard of Dutch hemophilia care and the availability of prophylaxis provide an opportunity to focus on health outcomes beyond mortality. Using both qualitative and quantitative methods,... Show moreThe high standard of Dutch hemophilia care and the availability of prophylaxis provide an opportunity to focus on health outcomes beyond mortality. Using both qualitative and quantitative methods, this thesis defined, measured and quantified relevant health outcomes for persons with hemophilia. In the first part of this thesis we showed that communication and information provision about treatment options and prophylaxis regimes may support persons with hemophilia in their decisions about current and future treatment products. This will likely result in improved bleeding outcomes. In the second part, we took the first steps towards value-based health care for hemophilia by defining a standard set of ten relevant health outcomes, including instruments to measure these outcomes. Routine measurement of the standard set may be implemented in clinical practice in order to further improve hemophilia care that adds value for patients. Already, the high standard of care has resulted in near-normal socio-economic participation of Dutch persons with hemophilia. Development of more sophisticated data collection tools will help to monitor relevant health outcomes over time. Show less
Meijeren-Pont, W. van; Tamminga, S.J.; Fiocco, M.; Avila, A.G.; Volker, G.; Janssen, S.M.J.; ... ; Grp 2022
Objective: To examine patient activation from the start of stroke rehabilitation and its course up until the 6-month follow-up. Design: Inception cohort study with a follow-up of 6 months. Setting:... Show moreObjective: To examine patient activation from the start of stroke rehabilitation and its course up until the 6-month follow-up. Design: Inception cohort study with a follow-up of 6 months. Setting: Multidisciplinary rehabilitation facility. Participants: A total of 478 patients (N=478) with stroke who received inpatient or outpatient rehabilitation, with a median age of 63.0 years (interquartile range, 56.0-70.0 years) with 308 (64.2%) being men. The study was completed by 439 patients (91.8%). Interventions: Not applicable. Main Outcome Measures: Patient activation was measured with the Patient Activation Measure (PAM) (score 0-100, 4 levels, where a higher score and level denotes more patient activation). The PAM was measured at the start of the rehabilitation (baseline) and 3 and 6 months thereafter and was analyzed using the multivariate mixed model analysis. Results: At baseline, the mean PAM score was 60.2 +/- 14.3, with the number of patients in PAM levels 1, 2, 3, and 4 being 76 (17.8%), 85 (19.9%), 177 (41.4%), and 90 (21.0%), respectively. The multivariate mixed-model analysis demonstrated that the PAM score increased over time (baseline 60.2 +/- 14.3 vs 3 months 60.7 +/- 14.8 vs 6 months 61.9 +/- 18.0; P.007). Between baseline and 6 months, 122 patients (41.4%) remained at the same PAM level, 105 patients (35.6%) increased, and 68 patients (23.1%) decreased. At all time points, > 35% of patients were in level 1 or 2. Conclusions: PAM scores increased slightly over time from the start of rehabilitation up to the 6-month follow-up. However, more than one-third of patients remained at low levels (ie, level 1 and 2) of patient activation, which indicates that specific interventions during rehabilitation to increase patient activation might be of value. Archives of Physical Medicine and Rehabilitation 2022;103:1360-7 (c) 2022 by the American Congress of Rehabilitation Medicine. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/) Show less
Weijden, T. van der; Kraan, J. van der; Brand, P.L.P.; Veenendaal, H. van; Drenthen, T.; Schoon, Y.; ... ; Stiggelbout, A. 2022
Dutch initiatives targeting shared decision-making (SDM) are still growing, supported by the govern-ment, the Federation of Patients' Organisations, professional bodies and healthcare insurers. The... Show moreDutch initiatives targeting shared decision-making (SDM) are still growing, supported by the govern-ment, the Federation of Patients' Organisations, professional bodies and healthcare insurers. The large majority of patients prefers the SDM model. The Dutch are working hard to realise improvement in the application of SDM in daily clinical practice, resulting in glimpses of success with objectified improve-ment on observed behavior. Nevertheless, the culture shift is still ongoing. Large-scale uptake of SDM behavior is still a challenge. We haven't yet fully reached the patients' needs, given disappointing research data on patients' experiences and professional behavior. In all Dutch implementation projects, early adopters, believers or higher-educated persons have been overrepresented, while patients with limited health literacy have been underrepresented. This is a huge problem as 25% of the Dutch adult population have limited health literacy. To further enhance SDM there are issues to be addressed: We need to make physicians conscious about their limited application of SDM in daily practice, especially regarding preference and decision talk. We need to reward clinicians for the extra work that comes with SDM. We need to be inclusive to patients with limited health literacy, who are less often actually involved in decision-making and at the same time more likely to regret their chosen treatment compared to patients with higher health literacy. Show less
Rodrigo, S.F.; Exel, H.J. van; Keulen, N. van; Winden, L. van; Beeres, S.L.M.A.; Schalij, M.J. 2021
Purpose: Cardiac rehabilitation (CR) after hospitalization for acute coronary syndrome (ACS) has shown to reduce mortality, readmissions, and improve quality of life. CR is recommended by... Show morePurpose: Cardiac rehabilitation (CR) after hospitalization for acute coronary syndrome (ACS) has shown to reduce mortality, readmissions, and improve quality of life. CR is recommended by international guidelines but previous studies have shown low participation rates. Systematic CR referral might improve CR participation.Methods: The present study evaluates CR referral and CR participation of patients hospitalized for ACS in 2017 and treated according to local protocol, which includes systematic CR referral. Participation rate was divided into a group that finished the CR program and drop outs. In addition, factors associated with CR referral and participation rate were evaluated.Results: A total of 469 patients eligible for CR were included in the study, of which 377 (80%) were referred for CR and 353 (75%) participated in CR. Ninety percent of participants completed the CR pro-gram. Factors independently associated with CR referral included age (50-60 year vs. > 70 year: odds ratio [OR] 4.7, 95% confidence interval [CI] 1.98-11.2), diagnosis (ST-elevation myocardial infarction vs. unstable angina: OR 17.7, CI 7.59-41.7), previous cardiovascular disease (OR 0.4, CI 0.19-0.73) and left ventricular dysfunction vs. normal function (OR 2.2, CI 1.11-4.52). A larger distance to the CR center was associated with lower CR participation (<5km vs. > 20 km: OR 3.1, CI 1.20-7.72).Conclusions: Systematic CR referral in ACS patients results in high CR referral (80%) and participation (75%) rates. CR adherence might be further improved by increasing CR referral, especially in older patients and patients with NSTEMI or unstable angina. (c) 2021 The Authors. Published by Elsevier B.V. Show less
Individuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online... Show moreIndividuals having a genetic predisposition to cancer and their partners face challenging decisions regarding their wish to have children. This study aimed to determine the effects of an online decision aid to support couples in making an informed decision regarding their reproductive options. A nationwide pretest-posttest study was conducted in the Netherlands among 131 participants between November 2016 and May 2018. Couples were eligible for participation if one partner had a pathogenic variant predisposing for an autosomal dominant hereditary cancer syndrome. Participants completed a questionnaire before use (T0), and at 3 months (T3) after use of the decision aid to assess the primary outcome measure informed decision-making, and the secondary outcome measures decisional conflict, knowledge, realistic expectations, level of deliberation, and decision self-efficacy. T0-T3 comparisons show an overall positive effect for all outcome measures (allps < 0.05; knowledge (ES = - 1.05), decisional conflict (ES = 0.99), participants' decision self-efficacy (ES = -0.55), level of deliberation (ES = - 0.50), and realistic expectations (ES = - 0.44). Informed decision-making increased over time and 58.0% of the participants made an informed reproductive decision at T3. The online decision aid seems to be an appropriate tool to complement standard reproductive counseling to support our target group in making an informed reproductive decision. Use of the decision aid may lessen the negative psychological impact of decision-making on couples' daily life and wellbeing. Show less
Groenen, K.H.J.; Linden, Y.M. van der; Brouwer, T.; Dijkstra, S.P.D.; Graeff, A. de; Algra, P.R.; ... ; Taal, W. 2018
