ABSTRACT
PRIMARY OBJECTIVE: To describe factors influencing the QoL of patients with Parkinson's disease (PD), as experienced by patients themselves. RESEARCH DESIGN: A qualitative design was used to investigate which factors influence the QoL of patients with PD as this design allows one to focus sufficiently on (reporting) the experiences of patients and their perspectives. METHODS AND PROCEDURES: Interviews with patients (n = 27) were organized which formed the input for four focus groups and participants were selected by the Dutch Parkinson Association (PV). MAIN OUTCOMES AND RESULTS: The results illustrate that patients mentioned a broad array of issues related to their QoL, including intra- and interpersonal factors, quality of care, societal pressure and communication. Participants developed a model symbolizing a radar wheel to illuminate the complex and dynamic inter-relations between the themes affecting their QoL. How the set of factors actually influences a person's life differs per patient and per situation. CONCLUSIONS: The QoL of patients with PD is influenced by many interacting factors related to their health, personal relations, care, communication and society. To improve the QoL and care for persons with PD, all factors should be taken into account. Person-centred care recognizes the uniqueness and capabilities of patients with PD.
Subject(s)
Focus Groups , Parkinson Disease/psychology , Quality of Life/psychology , Adult , Caregivers/psychology , Communication , Female , Humans , Male , Middle Aged , Netherlands/epidemiology , Parkinson Disease/epidemiology , Qualitative Research , Quality of Health Care , Social Support , Surveys and QuestionnairesABSTRACT
The objective of this study was to investigate the contribution of rapid digit naming, phonological memory, letter sound naming, and orthographic knowledge to the prediction of responsiveness to a school-based, individual intervention of word reading fluency problems of 122 Dutch second and third graders whose reading scores were below the 10th percentile in comparison with the normative group. Degree of responsiveness was determined by comparison of a pre- and posttest measure of word reading fluency with a 6-month interval. At posttest, 38% of the children had improved their reading scores above the 10th percentile. Maintenance scores revealed no significant growth on average, confirming that word reading fluency skills of poor readers are hard to remediate. Except rapid digit naming, none of the measures predicted responsiveness after controlling for the autoregressive effect of initial performance on fluency of word reading. A large part of the variance remained unexplained, supporting the advantage of a response-to-intervention approach above traditional psychometric testing to identify severe reading disabilities.
