Development of a patient decision aid for discharge planning of hospitalized patients with stroke.

BACKGROUND: Patient involvement in discharge planning of patients with stroke can be accomplished by providing personalized outcome information and promoting shared decision-making. The aim of this study was to develop a patient decision aid (PtDA) for discharge planning of hospitalized patients with stroke. METHODS: A convergent mixed methods design was used, starting with needs assessments among patients with stroke and health care professionals (HCPs). Results of these assessments were used to develop the PtDA with integrated outcome information in several co-creation sessions. Subsequently, acceptability and usability were tested to optimize the PtDA. Development was guided by the International Patient Decision Aids Standards (IPDAS) criteria. RESULTS: In total, 74 patients and 111 HCPs participated in this study. A three-component PtDA was developed, consisting of: 1) a printed consultation sheet to introduce the options for discharge destinations, containing information that can be specified for each individual patient; 2) an online information and deliberation tool to support patient education and clarification of patient values, containing an integrated "patients-like-me" model with outcome information about discharge destinations; 3) a summary sheet to support actual decision-making during consultation, containing the patient's values and preferences concerning discharge planning. In the acceptability test, all qualifying and certifying IPDAS criteria were fulfilled. The usability test showed that patients and HCPs highly appreciated the PtDA with integrated outcome information. CONCLUSIONS: The developed PtDA was found acceptable and usable by patients and HCPs and is currently under investigation in a clinical trial to determine its effectiveness.

Experiences with information provision and preferences for decision making of patients with acute stroke.

OBJECTIVE: The aim of this study was to gain insight into experiences of patients with acute stroke regarding information provision and their preferred involvement in decision-making processes during the initial period of hospitalisation. METHODS: A sequential explanatory design was used in two independent cohorts of patients with stroke, starting with a survey after discharge from hospital (cohort 1) followed by observations and structured interviews during hospitalisation (cohort 2). Quantitative data were analysed descriptively. RESULTS: In total, 72 patients participated in this study (52 in cohort 1 and 20 in cohort 2). During hospitalisation, the majority of the patients were educated about acute stroke and their treatment. Approximately half of the patients preferred to have an active role in the decision-making process, whereas only 21% reported to be actively involved. In cohort 2, 60% of the patients considered themselves capable to carefully consider treatment options. CONCLUSIONS: Active involvement in the acute decision-making process is preferred by approximately half of the patients with acute stroke and most of them consider themselves capable of doing so. However, they experience a limited degree of actual involvement. PRACTICE IMPLICATIONS: Physicians can facilitate patient engagement by explicitly emphasising when a decision has to be made in which the patient's opinion is important.

Improving community healthcare for patients with Parkinson's disease: the dutch model.

Because of the complex nature of Parkinson's disease, a wide variety of health professionals are involved in care. Stepwise, we have addressed the challenges in the provision of multidisciplinary care for this patient group. As a starting point, we have gained detailed insight into the current delivery of allied healthcare, as well as the barriers and facilitators for optimal care. To overcome the identified barriers, a tertiary referral centre was founded; evidence-based guidelines were developed and cost-effectively implemented within regional community networks of specifically trained allied health professionals (the ParkinsonNet concept). We increasingly use ICT to bind these professional networks together and also to empower and engage patients in making decisions about their health. This comprehensive approach is likely to be feasible for other countries as well, so we currently collaborate in a European collaboration to improve community care for persons with Parkinson's disease.

Evaluation of a Patient-Specific Index as an outcome measure for physiotherapy in Parkinson's disease.

AIM: The aim of this paper was to develop and evaluate a patient-specific index for physiotherapy in Parkinson's disease (PSI-PD). METHODS: In the PSI-PD, patients 1) select problematic activities out of a predefined list, with one self-report item; 2) rank selected items in order of importance; and 3) rate severity for each ranked item. To examine test-retest reliability, a cohort of patients was asked to complete the PSI-PD twice. Afterwards, validity was evaluated using a telephone interview. RESULTS: The PSI-PD was completed twice by 81 patients. Test-retest agreement for the selection of activity limitations was 73% to 94%. Items ranked by patients were categorized into domains, of which gait, transfers and dexterity were rated most frequently (41%-70%). Test-retest agreement for ranked domains ranged from 74% to 82%. Interviews confirmed that the PSI-PD reliably identified problem areas. CONCLUSIONS: The PSI-PD is a relevant, reliable and valid instrument to identify limitations in everyday activities that are important for both PD patients and physiotherapists.

Quality indicators for physiotherapy in Parkinson's disease.

AIM: The aim of this study was to develop quality indicators for physiotherapy in Parkinson's disease (PD) according to international criteria. METHODS: Indicators were based on an evidence-based guideline for physiotherapy in PD. Guideline recommendations were transformed into indicators and rated for their relevance by an expert panel. Relevant indicators were incorporated into a questionnaire termed ''Quality Indicators for Physiotherapy in PD'' (QIP-PD). The QIP-PD was piloted among 105 physiotherapists. The adjusted version was evaluated in 46 physiotherapists with specific expertise in PD and in 795 general physiotherapists. The following clinimetric aspects of the QIP-PD were tested: completeness of answers, response distribution, internal consistency, and discriminative power. The reliability of the QIP-PD was evaluated by interviews among a randomly selected cohort of 32 PD experts and 32 general physiotherapists. RESULTS: The expert panel selected 16 indicators, which were transformed into an adjusted 17-item QIP-PD. The adjusted QIP-PD was completed by 41 expert physiotherapists and 286 general physiotherapists. Comple-teness of item scores ranged from 95-98%. Six items were excluded from the final analyses as they showed ceiling effect among both groups, or lacked discriminative power. The total QIP-PD score for the 11 items was significantly higher for expert physiotherapists (35.1+/-4.2) compared to general physiotherapists (22.2+/-7.7; P=0.01). Internal consistency was good (Crohnbach's alpha 0.84). QIP-PD scores of therapists and interviewers (correlated using Intraclass Correlations Coefficients) ranged from 0.63 to 0.75. CONCLUSIONS: The QIP-PD is a relevant, feasible, valid, discriminative and reliable instrument to measure adherence to guidelines for physiotherapy in PD. In addition, the results underscore that quality improvement interventions for physiotherapy in PD are needed, as guideline adherence is suboptimal in physiotherapists without specific PD expertise.

Clinimetric analyses of the Modified Parkinson Activity Scale.

OBJECTIVE: The Parkinson Activity Scale (PAS) is designed for functional assessment in Parkinson's disease (PD), but the scale has - in its current form - several drawbacks. The objectives of the present study are to (a) introduce a Modified PAS, with unambiguous scoring options and without ceiling effect; (b) evaluate the inter-rater agreement, using physiotherapists with and without PD-specific expertise; and (c) examine the concurrent validity with the VAS-Global Functioning and the UPDRS-III. METHODS: The Modified PAS was developed based on the results of a recent pilot feasibility study [Keus SHJ, Bloem BR, van Hilten JJ, Ashburn A, Munneke M. Effectiveness of physiotherapy in Parkinson's disease: The feasibility of a randomised controlled trial. Parkinsonism Relat Disord 2007; 13(2):115-21.]. To evaluate inter-rater agreement, the Modified PAS was scored by a large number of raters (n=13) in 15 patients (Hoehn and Yahr stage 2-4), thus yielding a high number of observations (n=195) and creating adequate power. To ascertain broad applicability of the results, both physiotherapists with and without PD-specific expertise participated. RESULTS: The interquartile range of the Modified PAS total scores was 40-51, within a possible range of 0 (optimal performance) to 56 (worst performance), suggesting lack of ceiling effect. The precision of these scores was 2.6 points, with an inter-rater error of 1.3 and a patient-induced error of 2.3. There were no differences between experts and non-experts. Correlation to Global Functioning (0.79) and UPDRS-III (0.64) was good. CONCLUSION: The Modified PAS showed no ceiling effect, good concurrent validity, good inter-rater agreement and no differences between experts and non-experts.

Allied health care interventions and complementary therapies in Parkinson's disease.

Allied health care and complementary therapies are used by many patients with Parkinson's disease (PD). For allied health care, supportive scientific evidence is gradually beginning to emerge, and interventions are increasingly integrated in the treatment programs for PD patients. To evaluate whether such multidisciplinary programs are justifiable, we review the literature of allied health care and complementary therapies in PD. According to the level of available evidence, we provide recommendations for clinical practice. Finally, we discuss the need for an improved organization of allied health care, and identify topics for future research to further underpin the pros and cons of allied health care and complementary therapies in PD.

Effectiveness of physiotherapy in Parkinson's disease: the feasibility of a randomised controlled trial.

To study the feasibility of a large randomised controlled trial (RCT) evaluating the effectiveness of physiotherapy in Parkinson's disease (PD), 173 patients were asked to participate in a study with random allocation to best practice physiotherapy, or to no physiotherapy. The primary outcome measures were the Parkinson's disease questionnaire-39, the Parkinson activity scale, and a patient preference outcome scale (PPOS). Only 14% of the patients could be included in the study. The PPOS showed the largest effect size (0.74) with a significant group effect (p<0.05). Specific alterations to the study design to ensure successful RCTs in this field are recommended.