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.

[1]  Bastiaan R Bloem,et al.  Moving towards patient-centered healthcare for patients with Parkinson's disease. , 2011, Parkinsonism & related disorders.

[2]  Alastair Baker,et al.  Crossing the Quality Chasm: A New Health System for the 21st Century , 2001, BMJ : British Medical Journal.

[3]  K. Bertakis,et al.  Patient-Centered Care is Associated with Decreased Health Care Utilization , 2011, The Journal of the American Board of Family Medicine.

[4]  M. Bojar.  DEPARTMENT OF NEUROLOGY , 1923 .

[5]  Glyn Elwyn,et al.  Undetermined impact of patient decision support interventions on healthcare costs and savings: systematic review , 2014, BMJ : British Medical Journal.

[6]  M. Elliott,et al.  Case-mix adjustment of the National CAHPS benchmarking data 1.0: a violation of model assumptions? , 2001, Health services research.

[7]  B. Giraudeau,et al.  Sample size calculation for multicenter randomized trial: taking the center effect into account. , 2007, Contemporary clinical trials.

[8]  Megan K. Beckett,et al.  Hospital survey shows improvements in patient experience. , 2010, Health affairs.

[9]  Jennifer A Whitty,et al.  Patient-Centered Approaches to Health Care , 2013, Medical care research and review : MCRR.

[10]  D. McCaughey,et al.  Patient perceptions of patient‐centred care: empirical test of a theoretical model , 2015, Health expectations : an international journal of public participation in health care and health policy.

[11]  Carolyn Rutter,et al.  Introducing decision aids at Group Health was linked to sharply lower hip and knee surgery rates and costs. , 2012, Health affairs.

[12]  G. Mead,et al.  Neuropsychiatric outcomes of stroke , 2014, The Lancet Neurology.

[13]  J. Fleiss.  The design and analysis of clinical experiments , 1987 .

[14]  Gail Geller,et al.  The moral nature of patient-centeredness: is it "just the right thing to do"? , 2006, Patient education and counseling.

[15]  Glyn Elwyn,et al.  Methods for incorporating patients' views in health care , 2003, BMJ : British Medical Journal.

[16]  C. Hayes.  Identifying important issues for people with Parkinson's disease. , 2002, British journal of nursing.

[17]  J. Dhanda.  Treating patient experience and clinical outcomes equally , 2014, BMJ : British Medical Journal.

[18]  Are consumer surveys valuable as a service improvement tool in health services? A critical appraisal. , 2009, International journal of health care quality assurance.

[19]  Dolf de Boer,et al.  The discriminative power of patient experience surveys , 2011, BMC health services research.

[20]  R. Epstein,et al.  Why the nation needs a policy push on patient-centered health care. , 2010, Health affairs.

[21]  David Cella,et al.  A Comprehensive Method for the Translation and Cross-Cultural Validation of Health Status Questionnaires , 2005, Evaluation & the health professions.

[22]  K. Davis,et al.  Equitable access to care--how the United States ranks internationally. , 2014, The New England journal of medicine.

[23]  Parkinson ' s Disease Center and Movement Disorders Clinic , 2013 .

[24]  Bastiaan R Bloem,et al.  Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions , 2013, Journal of medical Internet research.

[25]  Eric C. Schneider,et al.  Patient Centered Experiences in Breast Cancer: Predicting Long-Term Adherence to Tamoxifen Use , 2007, Medical care.

[26]  A. Zaslavsky,et al.  Adjusting for Patient Characteristics When Analyzing Reports From Patients About Hospital Care , 2001, Medical care.

[27]  B. Bloem,et al.  Patient-centeredness in PD care: development and validation of a patient experience questionnaire. , 2012, Parkinsonism & related disorders.

[28]  D. Barron,et al.  Facilitated patient experience feedback can improve nursing care: a pilot study for a phase III cluster randomised controlled trial , 2013, BMC Health Services Research.

[29]  Marc N. Elliott,et al.  How can Health Care Organizations be Reliably Compared?: Lessons From a National Survey of Patient Experience , 2011, Medical care.

[30]  Joseph L. Fleiss,et al.  The Design and Analysis of Clinical Experiments: Fleiss/The Design , 1999 .

[31]  B. Bloem,et al.  Integrated multidisciplinary care in Parkinson's disease: a non-randomised, controlled trial (IMPACT) , 2013, The Lancet Neurology.

[32]  C. Minder,et al.  A simple approach to fairer hospital benchmarking using patient experience data. , 2011, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[33]  J. Mount,et al.  Variability of Experiences for Individuals Living with Parkinson Disease , 2003 .

[34]  S. Shortell,et al.  Crossing the quality chasm: implications for health services administration education. , 2004, The Journal of health administration education.

[35]  M. Friedberg,et al.  Motivators and Barriers to Using Patient Experience Reports for Performance Improvement , 2013, Medical care research and review : MCRR.

[36]  B. Bloem,et al.  Multidisciplinary care for Parkinson's disease: not if, but how! , 2011, Postgraduate Medical Journal.

[37]  Jane M. Young,et al.  Audit and feedback: effects on professional practice and healthcare outcomes. , 2012, The Cochrane database of systematic reviews.

[38]  Basile Chaix,et al.  A brief conceptual tutorial on multilevel analysis in social epidemiology: investigating contextual phenomena in different groups of people , 2005, Journal of Epidemiology and Community Health.

[39]  Using Multilevel Modeling to Assess Case-Mix Adjusters in Consumer Experience Surveys in Health Care , 2009, Medical care.

[40]  Elliott Lowy,et al.  Mortality among patients with acute myocardial infarction: the influences of patient-centered care and evidence-based medicine. , 2010, Health services research.

[41]  L. Giddings,et al.  Perceived unmet needs for health care among Parkinson's Society of New Zealand members with Parkinson's disease. , 2008, Parkinsonism & related disorders.

[42]  Louise Locock,et al.  Collecting data on patient experience is not enough: they must be used to improve care , 2014, BMJ : British Medical Journal.

[43]  Susan Michie,et al.  Patient-centredness in chronic illness: what is it and does it matter? , 2003, Patient education and counseling.