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.