Erratum: Author Correction: Using a smartphone-based self-management platform to support medication adherence and clinical consultation in Parkinson's disease.

[This corrects the article DOI: 10.1038/s41531-016-0003-z.].

Using a smartphone-based self-management platform to support medication adherence and clinical consultation in Parkinson's disease.

The progressive nature of Parkinson's disease, its complex treatment regimens and the high rates of comorbid conditions make self-management and treatment adherence a challenge. Clinicians have limited face-to-face consultation time with Parkinson's disease patients, making it difficult to comprehensively address non-adherence. Here we share the results from a multi-centre (seven centres) randomised controlled trial conducted in England and Scotland to assess the impact of using a smartphone-based Parkinson's tracker app to promote patient self-management, enhance treatment adherence and quality of clinical consultation. Eligible Parkinson's disease patients were randomised using a 1:1 ratio according to a computer-generated random sequence, stratified by centre and using blocks of variable size, to intervention Parkinson's Tracker App or control (Treatment as Usual). Primary outcome was the self-reported score of adherence to treatment (Morisky medication adherence scale -8) at 16 weeks. Secondary outcomes were Quality of Life (Parkinson's disease questionnaire -39), quality of consultation for Parkinson's disease patients (Patient-centred questionnaire for Parkinson's disease), impact on non-motor symptoms (Non-motor symptoms questionnaire), depression and anxiety (Hospital anxiety and depression scale) and beliefs about medication (Beliefs about Medication Questionnaire) at 16 weeks. Primary and secondary endpoints were analysed using a generalised linear model with treatment as the fixed effect and baseline measurement as the covariate. 158 patients completed the study (Parkinson's tracker app = 68 and TAU = 90). At 16 weeks Parkinson's tracker app significantly improved adherence, compared to treatment as usual (mean difference: 0.39, 95%CI 0.04-0.74; p = 0.0304) with no confounding effects of gender, number of comorbidities and age. Among secondary outcomes, Parkinson's tracker app significantly improved patients' perception of quality of consultation (0.15, 95% CI 0.03 to 0.27; p = 0.0110). The change in non-motor symptoms was -0.82 (95% CI -1.75 to 0.10; p = 0.0822). 72% of participants in the Parkinson's tracker app group continued to use and engage with the application throughout the 16-week trial period. The Parkinson's tracker app can be an effective and novel way of enhancing self-reported medication adherence and quality of clinical consultation by supporting self-management in Parkinson's disease in patients owning smartphones. Further work is recommended to determine whether the benefits of the intervention are maintained beyond the 16 week study period.

Multidisciplinary Collaboration in Professional Networks for PD A Mixed-Method Analysis.

BACKGROUND: ParkinsonNet, a nationwide organization with regionally oriented professional health networks in TheNetherlands, aims to improve the quality of Parkinson care. Facilitation of multidisciplinary collaboration is a key objective of ParkinsonNet. OBJECTIVES: This study examined whether the concept enhances multidisciplinary collaboration between healthcare professionals involved in Parkinson care. METHODS: A regional network involving 101 healthcare professionals was newly established. Participants received two questionnaires. One aimed at documenting direct working relationships ('connections') between professionals and the other aimed at evaluating multidisciplinary team performance. Additionally, thirteen healthcare professionals were interviewed to identify barriers and facilitators for multidisciplinary collaboration. 'Social network analysis' focused on sub-networks around three community hospitals at baseline and one year after the implementation. RESULTS: The number of 'knowing each other' connections increased from 1431 to 2175 (52% , p <  0.001) and 'professional contact' connections increased from 664 to 891 (34% , p <  0.001). Large differences between sub-networks were found, positive changes being associated with a central role of neurologists and nurse specialists committed to multidisciplinary care. The perceived team performance did not change. Participants experienced problems with information exchange and interdisciplinary communication. Generally, participants were unaware of other healthcare professionals involved in individual patients and what treatments they provide simultaneously. CONCLUSIONS: ParkinsonNet partially enhanced multidisciplinary collaboration between healthcare professionals involved in Parkinson care. Crucial facilitators of this were a central role of nurse specialists and the commitment to collaborate with and refer to expert therapists among neurologists. Additional measures are needed to further improve multidisciplinary care across different institutions and around individual patients.

Capturing patients' experiences to change Parkinson's disease care delivery: a multicenter study.

Capturing patients' perspectives has become an essential part of a quality of care assessment. The patient centeredness questionnaire for PD (PCQ-PD) has been validated in The Netherlands as an instrument to measure patients' experiences. This study aims to assess the level of patient centeredness in North American Parkinson centers and to demonstrate the PCQ-PD's potential as a quality improvement instrument. 20 Parkinson Centers of Excellence participated in a multicenter study. Each center asked 50 consecutive patients to complete the questionnaire. Data analyses included calculating case mix-adjusted scores for overall patient centeredness (scoring range 0-3), six subscales (0-3), and quality improvement (0-9). Each center received a feedback report on their performance. The PCQ-PD was completed by 972 PD patients (median 50 per center, range 37-58). Significant differences between centers were found for all subscales, except for emotional support (p < 0.05). The information subscale (mean 1.62 SD 0.62) and collaboration subscale (mean 2.03 SD 0.58) received the lowest experience ratings. 14 centers (88 %) who returned the evaluation survey claimed that patient experience scores could help to improve the quality of care. Nine centers (56 %) utilized the feedback to change specific elements of their care delivery process. PD patients are under-informed about critical care issues and experience a lack of collaboration between healthcare professionals. Feedback on patients' experiences facilitated Parkinson centers to improve their delivery of care. These findings create a basis for collecting patients' experiences in a repetitive fashion, intertwined with existing quality of care registries.

Personal health communities: a phenomenological study of a new health-care concept.

CONTEXT: Fragmentation of care, complexity of diseases and the need to involve patients actively in their individual health care led to the development of the personal health community (PHC). In a PHC, patients can -regardless of the nature of their condition- invite all professionals that are involved in their health care process. Once gathered, the patient and health care team can exchange information about the patient's health and communicate through several functionalities, in a secured environment. OBJECTIVES: Exploring the use, first experiences and potential consequences of using PHCs in health care. DESIGN: Qualitative phenomenological study. PARTICIPANTS: Eighteen respondents, consisting of women experiencing infertility (n = 5), persons with Parkinson's disease (n = 6), a gynaecologist, a fertility doctor, a fertility nurse, three Parkinson's specialist nurses and a neurologist. RESULTS: First experiences with PHCs showed that patients use their PHC differently, dependending on their condition and people involved. Various (potential) advantages for future health care were mentioned relating to both organizational aspects of care (e.g. continuity of care) and the human side of care (e.g. personal care). Patient involvement in care was facilitated. Disadvantages were the amount of work that it took and technological issues. CONCLUSIONS: Using PHCs leads to promising improvements in both the organization of care and care experience, according to the participants in this study. They indicate that patients with different diseases and in different circumstances can benefit from these improvements. The PHC seem to be an online tool that can be applied in a personalized way. When (technically) well facilitated, it could stimulate active involvement of patients in their own health and health care. It warrants further research to study its effect on concrete health outcomes.

Using online health communities to deliver patient-centered care to people with chronic conditions.

BACKGROUND: Our health care system faces major threats as the number of people with multiple chronic conditions rises dramatically. OBJECTIVE: To study the use of Online Health Communities (OHCs) as a tool to facilitate high-quality and affordable health care for future generations. METHODS: OHCs are Internet-based platforms that unite either a group of patients, a group of professionals, or a mixture of both. Members interact using modern communication technologies such as blogs, chats, forums, and wikis. We illustrate the use of OHCs for ParkinsonNet, a professional network for Parkinson disease whose participants-both patients and professionals-use various types of OHCs to deliver patient-centered care. RESULTS: We discuss several potential applications in clinical practice. First, due to rapid advances in medical knowledge, many health professionals lack sufficient expertise to address the complex health care needs of chronic patients. OHCs can be used to share experiences, exchange knowledge, and increase disease-specific expertise. Second, current health care delivery is fragmented, as many patients acquire relationships with multiple professionals and institutions. OHCs can bridge geographical distances and enable interdisciplinary collaboration across institutions and traditional echelons. Third, chronic patients lack adequate tools to self-manage their disease. OHCs can be used to actively engage and empower patients in their health care process and to tailor care to their individual needs. Personal health communities of individual patients offer unique opportunities to store all medical information in one central place, while allowing transparent communication across all members of each patient's health care team. CONCLUSIONS: OHCs are a powerful tool to address some of the challenges chronic care faces today. OHCs help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice.

Moving from physician-centered care towards patient-centered care for Parkinson's disease patients.

Today's society is changing rapidly and individuals increasingly favor an active role in designing their own lives. Contemporary patients are no exception, but the present health care system-which is organized primarily from the provider's perspective-is not yet prepared for this development. Here, we argue that an alternative way to organize health care, namely more from the patient's perspective, may help to contain costs, while improving the quality, safety and access to care. This involves a redefinition of the patient-doctor relationship, such that patients are no longer regarded as passive objects, but rather as active subjects who work as partners with health care professionals to optimize health ('participatory medicine'). The opportunities that come with such a collaborative and patient-centered care model are reviewed within the context of patients with Parkinson's disease. We also discuss societal and Parkinson-specific barriers that could impede implementation of this alternative care model to the management of Parkinson's disease and other chronic conditions.

Patient-centeredness in PD care: development and validation of a patient experience questionnaire.

INTRODUCTION: Patient-centeredness is increasingly recognized as a crucial element of quality of care. A suitable instrument to assess the level of patient-centeredness for Parkinson's disease (PD) care is lacking. Here we describe the development and validation of the Patient-Centered Questionnaire for PD (PCQ-PD), and its initial application in a large patient sample. METHODS: Based on the outcomes of eight focus groups we composed a questionnaire that measures patient-centeredness by assessing patients' care experiences. The questionnaire was sent to 1112 Dutch PD patients, and face-, content- and construct-validity and reliability were assessed. The level of patient-centeredness was determined by calculating scores for overall patient-centeredness [0-3], subscale experiences [0-3], item experience, item priority and quality improvement. RESULTS: 895 PD patients (net response 82.0%) completed the questionnaire. After the validation procedure, the PCQ-PD addressed 46 care aspects in six different subscales of patient-centeredness. The internal consistency of the instrument, expressed in Cronbach's α per subscale, ranged from 0.62 to 0.84. The overall patient-centeredness score was 1.69 (SD 0.45). 'Emotional support' (1.05, SD 0.90) and 'provision of tailored information' (1.18, SD 0.57) subscales received the lowest experience ratings. 'Access to medical records' obtained the highest item quality improvement score (5.44). CONCLUSIONS: This study produced a valid instrument to measure patient-centeredness in PD care. Psychometric properties of the instrument were good. Application of the PCQ-PD revealed the level of patient-centeredness in the care for PD patients in The Netherlands. The main outcome was a compelling call for the provision of tailored information and emotional support.

Connectedness of healthcare professionals involved in the treatment of patients with Parkinson's disease: a social networks study.

BACKGROUND: Patients with chronic illness typically receive ambulatory treatment from multiple health professionals. Connectedness between these professionals may influence their clinical decisions and the coordination of patient care. We aimed to describe and analyze connectedness in a regional network of health professionals involved in ambulatory treatment of patients with Parkinson's disease (PD). METHODS: Observational study with 104 health professionals who had joined a newly established network (ParkinsonNet) were asked to complete a pre-structured form to report on their professional contacts with others in the network. Using social networks methods, network measures were calculated for the total network and for the networks of individual health professionals. We planned to test differences between subgroups of health professionals regarding 12 network measures, using a random permutation method. RESULTS: Ninety-six health professionals (92%) provided data on 101 professionals. The reciprocity of reported connections was 0.42 in the network of professional contacts. Measures characterizing the individual networks showed a wide variation; e.g., density varied between 0 and 100% (mean value 28.4%). Health professionals with ≥10 PD patients had higher values on 7 out of 12 network measures compare to those with < 10 PD patients (size, number of connections, two step reach, indegree centrality, outdegree centrality, inreach centrality, betweenness centrality). Primary care professionals had lower values on 11 out of 12 network measures (all but reach efficiency) compared to professionals who were affiliated with a hospital. CONCLUSIONS: Our measure of professional connectedness proved to be feasible in a regional disease-specific network of health professionals. Network measures describing patterns in the professional contacts showed relevant variation across professionals. A higher caseload and an affiliation with a hospital were associated with stronger connectedness with other health professionals.

[Insufficient medication compliance in Parkinson's disease]. / Onvoldoende therapietrouw bij ziekte van Parkinson.

Medication compliance is generally suboptimal, particularly in patients with complex polypharmacy. This generic treatment problem is described here for Parkinson's disease (PD). We would expect patients with PD to have good medication compliance, since missed doses immediately result in worsening of symptoms. However, recent research has revealed that PD patients demonstrate poor medication compliance. Poor medication compliance is particularly undesirable for patients with PD because regular intake of medication is required for optimal treatment effect. Possible ways of improving medication compliance are pharmacotherapeutic measures and behavioural interventions. Modern methods of communication (text message reminders) and 'smart' pill dispensers may be beneficial, but the advantages of such interventions have not yet been scientifically studied.

Moving towards patient-centered healthcare for patients with Parkinson's disease.

INTRODUCTION: Quality of care is becoming increasingly important in the field of movement disorders. Patient-centeredness is a crucial element of quality of care, but has thus far received limited attention regarding the treatment of movement disorder syndromes. As a first step towards patient-centered care in Parkinson's disease (PD), we explored the unmet needs of PD patients and their informal caregivers. METHODS: Eight focus group discussions involving 40 PD patients (mean age 62 years, Hoehn & Yahr stage 1-3) and 20 informal caregivers (mean age 63 years) were organized to explore the experiences in relation to patient-centered care. The key elements of patient-centeredness - as defined by the Picker Institute and the World Health Organization - were used as a framework for discussion and qualitative analysis. RESULTS: Patients and informal caregivers desired more emotional support from healthcare professionals, and wanted more active involvement in clinical decision making, but currently lacked sufficient information to do so. Participants also missed the tools to find professionals with PD expertise. Finally, they identified a lack of multidisciplinary collaboration as a major bottleneck in the current healthcare system. CONCLUSIONS: We identified various unmet needs among PD patients and informal caregivers. These joint experiences represent a disease-specific model of patient-centeredness for PD, which can assist healthcare professionals in implementing patient-centered care tailored to the preferences of each individual patient. The present findings will be used to construct a patient-centeredness questionnaire for PD that will clarify the quality of care from a patient's perspective.

Quantification of trunk rotations during turning and walking in Parkinson's disease.

OBJECTIVE: To develop a reliable, objective and sensitive measure of axial trunk rotations in PD, which can be applied in an ambulatory setting. METHODS: To quantify turning motion, two angular velocity transducers attached to the lower back measured angular velocity of the trunk in the yaw plane (i.e., around the longitudinal axis) and the roll plane (i.e., medio-lateral movements) in freely moving subjects who were instructed to walk and make various types of turning movements. RESULTS: Turn duration was longer in PD patients compared to controls. Peak yaw and peak roll angular velocities were lower in PD patients compared to controls during all turning tasks. CONCLUSIONS: This new approach to measure trunk sway during a simple turning task might serve as an instrument to objectively quantify turning while walking in PD. SIGNIFICANCE: It proves difficult to objectively assess turning performance based upon history taking or clinical examination alone. Objective and easy measurement of axial turning in PD might be used for clinical evaluation, but also in a domestic setting as outcome measure in intervention studies. Further research should focus on the clinical relevance of the new quantitative approach described in this paper, e.g., to detect freezing of gait episodes.