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 https://doi.org/10.1007/s11136-023-03429-7 The Personalized Priority and Progress Questionnaire (PPPQ): A personalized instrument for quality of life and self‑management for use in clinical trials and practice Judith Tommel1 · Cinderella K. Cardol1 Henriët van Middendorp1 · Andrea W. M. Evers1 · Rianne Stuivenberg1 · Sandra van Dijk1 · Accepted: 20 April 2023 © The Author(s) 2023 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). Keywords Personalized outcome · Patient-centered care · Patient priorities · Quality of life · Self-management · Chronic disease Plain English Summary Judith Tommel and Cinderella K. Cardol shared first authorship. Trial registration number and date of registration E-GOAL study: NL7338, registered on 2018-10-11. E-HELD study: NL7160, registered on 2018-07-16. * Judith Tommel 1 Health, Medical and Neuropsychology Unit, Institute of Psychology, Faculty of Social and Behavioural Sciences, Leiden University, Wassenaarseweg 52, 2333 AK Leiden, The Netherlands 1. What is the key problem? Treating every patient with the same treatment would mean that every patient needs the same things. However, patients are not the same. Patients differ in health, needs, preferences, and personal situations. Therefore, it is better to include these personal differences and to make sure that the treatment is the right fit. A tool that aids patients in making clear what they find important about their health and life, can help to personalize healthcare. 2. What is the main point of this study? In this study, we developed a tool that supports patients in defining their priorities for improvement and meas- 13 Vol.:(0123456789) Quality of Life Research ures changes in functioning. The tool consists of a personalized questionnaire that includes questions on quality of life (e.g., fatigue, pain, mood, social environment, daily activities) and self-management (e.g., diet, physical activity, smoking). In the final question, patients select the topics they find most important to improve on. 3. What do the results mean? The questionnaire showed to be a good, practical tool. In healthcare settings, patients could complete the questionnaire before every doctor’s appointment. In this way, doctors could keep track on patients’ functioning and use the results to discuss what patients need and what kind of treatment would fit. In research settings, researchers could use the results of the questionnaire to calculate how much patients’ functioning changed on the topics patients find most important. This is useful when evaluating whether a personalized treatment works. Introduction Patients vary in functioning, preferences, goals, and values [1, 2]. Besides patients’ biological and clinical functioning, these individual differences and priorities should be incorporated in interventions [3–5]. Patients with chronic kidney disease (CKD) have expressed a need for holistic care that includes all aspects of a person’s health and wellbeing, including quality of life (QoL) and selfmanagement behaviors (e.g., physical activity, dietary changes, medication use, non-smoking) [2, 6]. Moving away from a ‘mechanistic’ focus on laboratory results and focusing on patients’ actual wellbeing instead, is key for patient-centered care (PCC) [6]. PCC is defined as providing care that is respectful of and responsive to patient preferences, needs, and values and ensuring that patient values guide all clinical decisions [7]. Positive associations of PCC with enhanced QoL, wellbeing, patient satisfaction, perceived quality of care, and self-management [8–10], as well as improved clinical outcomes have been found, for example reductions in pain, blood pressure, complications, and hospitalization [9]. Thus, instead of evaluating one-size-fits-all interventions, the focus should be on identifying and offering the best intervention for every individual patient [11]. This calls for personalized (1) interventions and (2) outcome variables to do justice to each patient’s unique treatment trajectory [3, 4, 11]. As personalized interventions imply individual differences in treatment, standard generic outcome measures to evaluate their effectiveness will not suffice. Multiple questionnaires would be necessary to evaluate different treatment goals, 13 which significantly harms the power of these studies since only the data of subgroups that worked on similar treatment goals can be used [4]. Moreover, generic measures invalidate the personalized character of the intervention by clouding patients’ results with unimportant or not focused-on health domains [3, 4, 11, 12]. Using personalized assessments enables to evaluate whether inventions are not only clinically, but also personally relevant to patients (i.e., personal utility) [13]. This allows general conclusions on treatment effectiveness, while considering each unique treatment trajectory. This feature makes personalized outcome measures highly valuable in research settings. Personalized assessment can also be of great clinical value, as it helps to clarify patients’ needs and priorities. It provides a valuable asset in shared decision-making [12], in which patients have an active role in selecting treatment and care plans that (...truncated)