Introduction: Parkinson’s Disease (PD) is a progressive neurological disorder that severely affects patients’ lives. How patients cope with the stress of receiving this diagnosis is influenced by...Show moreIntroduction: Parkinson’s Disease (PD) is a progressive neurological disorder that severely affects patients’ lives. How patients cope with the stress of receiving this diagnosis is influenced by information-seeking coping style, which can be classified on two dimensions: monitoring (seeking information) and blunting (avoiding information). Patients’ level of monitoring and blunting may affect their perception of amount of information. Clinicians may not tailor the amount of information to the individual needs of patients, negatively impacting their recall. This study hypothesized that the amount of provided information by clinicians is equal for patients who score high on monitoring and patients who score high on blunting. Additionally, this study hypothesized that patients with high monitoring scores would report receiving too little information, and that patients with high blunting scores would report receiving too much information. Method: This study employed a prospective observational longitudinal design as part of the DiaMove Project. The sample consisted of newly diagnosed PD patients who completed questionnaires assessing their demographic characteristics, coping styles and perceived amount of information. Diagnostic consultations were video-recorded and subsequently observationally quantitatively coded for duration of information provision per topic. Statistical analyses included equivalence testing, independent t-tests and logistic regression. Results: This study found that the amount of information provided by clinicians is not equivalent for patients (N = 28) with high scores on the monitoring scale and those with high scores on the blunting scale (CI = [-0.26 – 0.37]; CI = [-0.20 – 0.43]). In addition, two independent t-tests were conducted, which showed no significant difference in the amount of information provided for high scores on the different coping styles (p = .288; p = .552). Furthermore, the likelihood of wanting to receive more or less information cannot be predicted by respectively high scores on the monitoring and blunting coping style (p > .05). Discussion: Patients’ level of monitoring or blunting was not a significant predictor for the amount of information provided and did not predict patients’ reported amount of information provided by clinicians. These findings may be influenced by limitations of self-reported questionnaires, such as the length and the small sample size of the study.Show less
Abstract Introduction: Parkinson’s Disease (PD) is a progressive neurodegenerative disorder which has a big impact on patients’ lives. During diagnostic consultations clinicians inform patients...Show moreAbstract Introduction: Parkinson’s Disease (PD) is a progressive neurodegenerative disorder which has a big impact on patients’ lives. During diagnostic consultations clinicians inform patients regarding the PD diagnosis and the treatment patients will receive. PD patients report dissatisfaction with the diagnostic consultations, which could be due to a lack of involvement in medical decision-making (MDM). More information about the topics of MDM, about the level of trust in the patients’ clinician and more patient involvement in MDM could therefore improve patient satisfaction. Research on patient involvement in MDM and trust in their clinician was still scarce. However, we think that patient satisfaction could be higher if patient involvement in MDM and trust in their clinician were improved. The first step in researching this was to investigate the MDM topics during diagnostic consultations for PD patients. Specifically, this study aimed to assess the level of patient involvement in MDM during diagnostic consultations and the factors affecting patient involvement. Finally, this study aimed to examine if patients who were more involved in MDM, had higher trust in their clinician. Gaining insight on these topics could empower them to implement more patient involvement and might thus lead to higher satisfaction and patients’ trust in their clinician. Methods: This study was a part of the DiaMove-project which had a prospective observational mixed-methods longitudinal design. Participants (N=26) completed questionnaires regarding characteristics before diagnostic consultations and reported trust in their clinicians (TiOS-sf) afterwards. The first and second diagnostic consultations were video-recorded. Researchers observationally coded topics of medical decisions and measured patient involvement regarding PD medication using the OPTION-12. Statistical analyses consisted of (multiple) regression analyses. Results: Most commonly observed MDM during diagnostic consultations regarding PD concerned whether or not to start PD medication and follow-up appointments. Patients mean involvement in MDM was low (M=14.11; 2.08 – 50.00). The level of patient involvement was higher for women (Cohen’sf 2=.24; p=.02). Age (p=.30) and educational level (p=.66) did not predict patient involvement. Moreover, the mean patient involvement was 4.18 on a scale from 1 to 5, and did not predict patients’ trust in clinicians (p=.90). Conclusion: Clinicians discuss decisions regarding PD medication and follow-up appointments were most frequently discussed during diagnostic consultations. The results suggested that patients’ mean involvement is low in medical decisions regarding PD medication. However, women are more involved. The results of this study should be interpreted cautiously because of a small sample size. It is recommended to repeat this study with a larger sample size. For clinical practice clinicians are advised to involve their patients more in the medical decision-making process.Show less
Abstract Introduction: Parkinson’s Disease (PD) is a progressive neurodegenerative disorder which has a big impact on patients’ lives. During diagnostic consultations clinicians inform patients...Show moreAbstract Introduction: Parkinson’s Disease (PD) is a progressive neurodegenerative disorder which has a big impact on patients’ lives. During diagnostic consultations clinicians inform patients regarding the PD diagnosis and the treatment patients will receive. PD patients report dissatisfaction with the diagnostic consultations, which could be due to a lack of involvement in medical decision-making (MDM). More information about the topics of MDM, about the level of trust in the patients’ clinician and more patient involvement in MDM could therefore improve patient satisfaction. Research on patient involvement in MDM and trust in their clinician was still scarce. However, we think that patient satisfaction could be higher if patient involvement in MDM and trust in their clinician were improved. The first step in researching this was to investigate the MDM topics during diagnostic consultations for PD patients. Specifically, this study aimed to assess the level of patient involvement in MDM during diagnostic consultations and the factors affecting patient involvement. Finally, this study aimed to examine if patients who were more involved in MDM, had higher trust in their clinician. Gaining insight on these topics could empower them to implement more patient involvement and might thus lead to higher satisfaction and patients’ trust in their clinician. Methods: This study was a part of the DiaMove-project which had a prospective observational mixed-methods longitudinal design. Participants (N=26) completed questionnaires regarding characteristics before diagnostic consultations and reported trust in their clinicians (TiOS-sf) afterwards. The first and second diagnostic consultations were video-recorded. Researchers observationally coded topics of medical decisions and measured patient involvement regarding PD medication using the OPTION-12. Statistical analyses consisted of (multiple) regression analyses. Results: Most commonly observed MDM during diagnostic consultations regarding PD concerned whether or not to start PD medication and follow-up appointments. Patients mean involvement in MDM was low (M=14.11; 2.08 – 50.00). The level of patient involvement was higher for women (Cohen’sf 2=.24; p=.02). Age (p=.30) and educational level (p=.66) did not predict patient involvement. Moreover, the mean patient involvement was 4.18 on a scale from 1 to 5, and did not predict patients’ trust in clinicians (p=.90). Conclusion: Clinicians discuss decisions regarding PD medication and follow-up appointments were most frequently discussed during diagnostic consultations. The results suggested that patients’ mean involvement is low in medical decisions regarding PD medication. However, women are more involved. The results of this study should be interpreted cautiously because of a small sample size. It is recommended to repeat this study with a larger sample size. For clinical practice clinicians are advised to involve their patients more in the medical decision-making process.Show less
Introduction: Parkinson’s Disease (PD) is a neurodegenerative, progressive motor disorder. Receiving this diagnosis can be impactful for patients. PD patients have reported dissatisfaction with the...Show moreIntroduction: Parkinson’s Disease (PD) is a neurodegenerative, progressive motor disorder. Receiving this diagnosis can be impactful for patients. PD patients have reported dissatisfaction with the diagnostic process, which may partly result from a perceived lack of active involvement during medical decision-making. Neurologists are expected to inform and involve patients based on the ethical imperative of patient autonomy. Yet, insight into how medical decisions are actually made is scarce, particularly which types of medical decisions, the extent of patient involvement, and how this affects their satisfaction. This study aimed to get more insight into medical decision-making by observing PD diagnostic consultations in current clinical practice. Hypotheses: Firstly, it was expected that medical decisions were related to topics such as follow-up appointments and PD medication (H1). Secondly, it was expected that the level of patient involvement was low during PD diagnostic consultations (H2). Thirdly, it was hypothesized that patient involvement and overall satisfaction were positively associated (H3). Fourthly, it was hypothesized that female, younger, and more highly educated patients were more substantially involved compared to male, older, and more lowly educated patients (H4, H5 & H6). Methods: This prospective longitudinal study used both quantitative (i.e., questionnaires, structured observational coding) and qualitative (i.e., explorative observational coding) data. PD patients (N=12) visiting neurology outpatient departments in the Netherlands were included upon referral. Diagnostic consultations were video-recorded and patients filled in questionnaires. Types of medical decisions were identified using an adapted existing coding scheme. The observed level of involvement was scored using the OPTION-12 for the most frequently and crucial occurring medical decision. Patients’ overall satisfaction with their consultations was measured six weeks after their last consultation. Statistical analyses included non-parametric tests and multiple regressions. Results: Topics of medical decisions most frequently concerned: follow-up appointments, PD medication and diagnostic testing. Patient involvement was low (M = 9.8; 0-100), indicating that neurologists exhibited few attempts to involve patients during medical decisions about PD medication. Patient involvement was not predictive for patients’ overall satisfaction (p = .23), nor did patients’ demographic characteristics predict the level of patient involvement (p = .29). Conclusion: Medical decisions during PD diagnostic consultations mainly pertained to follow-up appointments, diagnostic testing, and PD medication. PD patients are rarely involved in decisions about PD medication. These results should be interpreted with caution due to a small sample. We recommend repeating this study with a larger sample and investigating what neurologists think is necessary and feasible in terms of patient involvement for the various identified types of medical decisions.Show less
