Dataset Information

The Patient's Perspective on Shared Decision-Making in Advanced Parkinson's Disease: A Cross-Sectional Survey Study.

ABSTRACT: Background: Choosing between deep brain stimulation (DBS), Levodopa-Carbidopa intestinal gel (LCIG), or continuous subcutaneous Apomorphine infusion (CSAI) in advanced Parkinson's disease is a complex decision. It is paramount to combine evidence with the professional's expertise and the patient's preferences. The patient's preferences can be elicited and integrated into the treatment choice through shared decision-making (SDM). Objective: In this cross-sectional survey study we explored patient's involvement in decision-making and identified facilitators and barriers for shared decision-making (SDM) in advanced Parkinson from the patient's perspective. Methods: We invited 180 Dutch persons with Parkinson who started DBS, LCIG, or CSAI in the previous 3 years to complete a questionnaire. Questions covered three topics; (1) preferred and experienced roles in the decision process for an advanced treatment, (2) information needs to make a decision and actually received information, and (3) factors that had positively or negatively influenced shared decision-making (SDM). Results: One hundred and twenty one participants completed the questionnaire. The large majority preferred to be involved in the decision-making (93%), and most respondents had experienced an active role (85%). In about half of the respondents (47%), their preferred role did not match their experienced role; 28% had a more active role than they would have preferred. Although 77% perceived to be fully informed at the time of decision, only 41% stated they knew all three therapeutic options. Participants identified the most important facilitators for shared decision-making (SDM) at the patient's level (i.e., perceiving the decision to be his own choice), at the neurologist's level (i.e., having expertise on all treatment options, and taking time for the decision), and within the professional-patient relationship (i.e., trust and having an open discussion). The main barriers for shared decision-making (SDM) existed at the patient's level (i.e., perceiving there is no choice), neurologist's level (own treatment preference), and organizational level (i.e., no research available that compares treatments, multiple professionals involved, and lack of consultation time). Conclusions: Patients want to be involved and feel involved when choosing an advanced treatment, but often do not know all treatment options. Implementation of true patient involvement needs personalized information provision on all treatment options and improvement on how this information is communicated.

SUBMITTER: Nijhuis FAP

PROVIDER: S-EPMC6706819 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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The Patient's Perspective on Shared Decision-Making in Advanced Parkinson's Disease: A Cross-Sectional Survey Study.

Nijhuis Frouke A P FAP van den Heuvel Lieneke L Bloem Bastiaan R BR Post Bart B Meinders Marjan J MJ

Frontiers in neurology 20190816

<b>Background:</b> Choosing between deep brain stimulation (DBS), Levodopa-Carbidopa intestinal gel (LCIG), or continuous subcutaneous Apomorphine infusion (CSAI) in advanced Parkinson's disease is a complex decision. It is paramount to combine evidence with the professional's expertise and the patient's preferences. The patient's preferences can be elicited and integrated into the treatment choice through shared decision-making (SDM). <b>Objective:</b> In this cross-sectional survey study we ex ...[more]

PMID: 31474936

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Project description:ObjectivesWhile shared decision making (SDM) promotes health-related decisions that are informed, value-based and adhered to, few studies report on theory-based approaches to SDM adoption by healthcare professionals. We aimed to identify the factors influencing dietitians' intentions to adopt two SDM behaviours: 1) present dietary treatment options to patients and 2) help patients clarify their values and preferences.MethodsWe conducted a cross-sectional postal survey based on the Theory of Planned Behaviour among 428 randomly selected dietitians working in clinical practice across the Province of Quebec, Canada. We performed descriptive analyses and multiple regression analyses to determine the variables that explained the variance in intention to perform the behaviours.ResultsA total of 203 dietitians completed the questionnaire. Their ages were from 23 to 66 and they had been practising dietetics for 15.4±11.1 years (mean ± SD). On a scale from 1 to 7 (from strongly disagree to strongly agree), dietitians' intentions to present dietary treatment options and to clarify their patients' values and preferences were 5.00±1.14 and 5.68±0.74, respectively. Perceived behavioural control (??=?0.56, ?<0.0001), subjective norm (??=?0.16, ?<0.05), and moral norm (??=?0.22, ?<0.0001), were the factors significantly predicting the intention to present dietary treatment options, while perceived behavioural control (??=?0.60, ?<0.0001), attitude (??=?0.20, ?<0.05), and professional norm (??=?0.22, ?<0.001), significantly predicted the intention to help patients' clarify their values and preferences.ConclusionOur results showed that dietitians intend to adopt the two SDM behaviours studied. Factors influencing intention were different for each behaviour, except for perceived behavioural control which was common to both behaviours. Thus, perceived behavioural control could be a key factor in interventions aiming to encourage implementation of SDM by dietitians.

Project description:BackgroundHormone therapy is one option for some types of prostate cancer. Shared decision making (SDM) is important in the decision making process, but SDM between prostate cancer patients receiving hormone therapy and physicians is not fully understood. This study tested hypotheses: "Patients' perception of SDM is associated with treatment satisfaction, mediated by satisfaction with physicians' explanations and perceived effective decision making" and "The amount of information provided to patients by physicians on diseases and treatment is associated with treatment satisfaction mediated by patients' perceived SDM and satisfaction with physicians' explanations."MethodsThis cross-sectional study was conducted using an online panel via a private research company in Japan. The participants in this study were patients registered with the panel who had received or were currently receiving hormone therapy for prostate cancer and physicians registered with the panel who were treating patients with prostate cancer. Measures used in this study included a nine-item Shared Decision Making Questionnaire, levels of satisfaction with physicians' explanations and treatment satisfaction, and effective decision making for patients (feeling the choice is informed, value-based, likely to be implemented and expressing satisfaction with the choice), and a Shared Decision Making Questionnaire for Doctors. The hypotheses were examined using path analysis.ResultsIn total, 124 patients and 150 physicians were included in the analyses. In keeping with our hypotheses, perceived SDM significantly correlated with the physicians' explanations and perceived effective decision making for patients, and satisfaction with physicians' explanations and perceived effective decision making for patients were both related to treatment satisfaction. Although the amount of information provided to patients was correlated with the perceived SDM, it was indirectly related to their satisfaction with physicians' explanations.ConclusionsWhen physicians encourage patients to be actively involved in making decisions about treatment through the SDM process while presenting a wide range of information at the start of hormone therapy, patients' effective decision making and physicians' explanations may be improved; consequently, the patients' overall treatment satisfaction may be improved. Physicians who treat patients with prostate cancer may have underestimated the importance of SDM before starting hormone therapy, even greater extent than patients.

Project description:BackgroundWe assessed inpatient perceived shared decision making (SDM) and tested the association of SDM with inpatient satisfaction in public tertiary hospitals in Shanghai, China.MethodsA cross-sectional survey of 2585 inpatients in 47 public tertiary hospitals in Shanghai in July and August 2018 was conducted. We assessed overall SDM and 4 aspects of SDM and tested the factors influencing SDM and the association of SDM with patient satisfaction (patient satisfaction with physician services, medical expenses, outcomes and overall inpatient care), by adopting linear or two-level regression models.ResultsThe positive response rate (PRR) and high positive response rate (HPRR) to overall SDM among the inpatients of public tertiary hospitals in Shanghai were relatively high (95.30% and 87.86%, respectively), while the HPRR to "My physician informed me of different treatment alternatives" was relatively low (80.09%). In addition, the inpatients who underwent surgery during admission had higher HPRRs and adjusted HPRRs to overall SDM than those who did not undergo surgery. The study showed that the adjusted high satisfaction rates (HSRs) with physician services, medical expenses, outcomes and overall inpatient care among the inpatients with high level of overall SDM were higher (96.50%, 68.44%, 89.50% and 92.60%) than those among the inpatients without a high level of overall SDM (71.77%, 35.19%, 57.30% and 67.49%). The greatest differences in the adjusted HSRs between the inpatients with and without a high level of SDM were found in inpatient satisfaction with medical expenses and informed consent in SDM. Moreover, 46.22% of the variances in the HSRs with overall inpatient care across the hospitals were attributed to the hospital type (general hospitals vs. specialty hospitals).ConclusionsInpatient PRRs and HPRRs to SDM in public tertiary hospitals in Shanghai are relatively high overall but lower to information regarding alternatives. SDM can be affected by the SDM preference of both the patients and physicians and medical condition. Patient satisfaction can be improved through better SDM and should be committed at the hospital level.

Project description:BackgroundInstances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan.MethodsA cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process.ResultsOf the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates' considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings.ConclusionsSurrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning.

Dataset Information

The Patient's Perspective on Shared Decision-Making in Advanced Parkinson's Disease: A Cross-Sectional Survey Study.

Publications

The Patient's Perspective on Shared Decision-Making in Advanced Parkinson's Disease: A Cross-Sectional Survey Study.

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