The Personalized Priority and Progress Questionnaire (PPPQ): A personalized instrument for quality of life and self-management for use in clinical trials and practice

Quality of Life Research, vol. 32, pp. 2789–2803

Abstract

PURPOSE: The aim of this study was to develop and validate a brief personalized instrument that (1) defines patients' priorities for improvement, (2) measures progress in prioritized quality of life (QoL) and self-management outcomes, and (3) is applicable in both clinical practice and clinical trials. METHODS: The instrument was developed based on the literature on personalized assessment and patient priorities, feedback by clinicians, and six cognitive interviews with patients with chronic kidney disease. The resulting questionnaire, the Personalized Priority and Progress Questionnaire (PPPQ), contains a baseline and follow-op measurement. The baseline measurement assesses functioning on QoL (8 items) and self-management (5 items). The final item evaluates patients' priorities for improvement. The follow-up measurement assesses progress in QoL and self-management. A personalized progress score can be calculated indicating the amount of progress on the QoL or self-management domain that is prioritized by the individual patient. Psychometric properties of the PPPQ were evaluated among patients with chronic kidney disease (n = 121) and patients with kidney failure treated with dialysis (n = 22). RESULTS: The PPPQ showed to be a feasible instrument that is easy and quick to complete. Regarding the construct validity, small to large correlations were found between the items and existing validated questionnaires measuring related constructs. CONCLUSION: The PPPQ proved to be a feasible and valid instrument. The PPPQ can be adapted to match diverse populations and could be a useful tool both in clinical practice (e.g., to identify priorities and tailor treatment) and clinical trials (e.g., to evaluate the effectiveness of personalized interventions).

Authors 6

1. Judith Tommel corresponding Aachen Health Medical and Neuropsychology Unit Institute of Psychology Faculty of Social and Behavioural Sciences

   Leiden University

   Affiliation as printed

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands. j.tommel@fsw.leidenuniv.nl

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands

2. Cinderella K. Cardol Aachen Health Medical and Neuropsychology Unit Institute of Psychology Faculty of Social and Behavioural Sciences

   Leiden University

   Affiliation as printed

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands

3. Andrea W.M. Evers Aachen Health Medical and Neuropsychology Unit Institute of Psychology Faculty of Social and Behavioural Sciences

   Leiden University

   Affiliation as printed

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands

4. Rianne Stuivenberg Aachen Health Medical and Neuropsychology Unit Institute of Psychology Faculty of Social and Behavioural Sciences

   Leiden University

   Affiliation as printed

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands

5. Sandra van Dijk Aachen Health Medical and Neuropsychology Unit Institute of Psychology Faculty of Social and Behavioural Sciences

   Leiden University

   Affiliation as printed

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands

6. Henriët van Middendorp Aachen Health Medical and Neuropsychology Unit Institute of Psychology Faculty of Social and Behavioural Sciences

   Leiden University

   Affiliation as printed

   Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK, Leiden, The Netherlands