Healthcare is shifting towards a more person-centred approach, aiming at a personalised treatment that fits the patient’s preferences and needs. The use of patient-reported outcome measures (PROMs... Show moreHealthcare is shifting towards a more person-centred approach, aiming at a personalised treatment that fits the patient’s preferences and needs. The use of patient-reported outcome measures (PROMs) to systematically assess outcomes such as health-related quality of life and symptom burden can facilitate the process of adapting to what is important to the patient. But, how to integrate PROMs into a routine care setting and how to use PROMs to achieve this personalised treatment? This dissertation provides insight into and practical knowledge of the implementation and use of PROMs in routine nephrology care. Research was performed within the different steps for implementation of PROMs into routine care, including the selection of PROMs, pilot testing PROMs, and nationwide implementation and use of PROMs, using a broad variety of quantitative and qualitative research methods. The use of PROMs was investigated both at individual patient level and at population level, with the potential to facilitate personalised treatment and evaluation of healthcare quality. Patients and healthcare professionals considered the PROM-results relevant additional information in routine practice, complementary to traditional clinical measures. In addition, discussing individual PROM results proved to be of great added value and directly applicable in routine care. Show less
This dissertation aimed to broaden our understanding of patient-relevant outcomes after kidney transplantation with a special focus on the patients’ perspectives. By conducting different studies in... Show moreThis dissertation aimed to broaden our understanding of patient-relevant outcomes after kidney transplantation with a special focus on the patients’ perspectives. By conducting different studies in Dutch kidney transplant recipients and by synthesizing existing evidence, we explored several post-transplant patient-relevant outcomes (e.g. health-related quality of life, symptom burden, illness perceptions, medication non-adherence and hospital readmission) and investigated pathways to improve these outcomes, hereby adding to the existing body of knowledge in kidney transplantation. In Chapter 1, we briefly introduced the status quo of patient-relevant outcomes in kidney transplant recipients, discussed potential pathways to improve patient-relevant outcomes in kidney transplant recipients, and provided an overview of the studies presented in this dissertation. In Chapter 7, we provided a summary of our main findings from different studies described in Chapter 2 - 6, the clinical implication of our main findings, and suggestions for future research. Show less
Objective: In CheckMate 743 (NCT02899299), nivolumab + ipilimumab significantly prolonged overall survival in patients with unresectable malignant pleural mesothelioma (MPM). We present patient... Show moreObjective: In CheckMate 743 (NCT02899299), nivolumab + ipilimumab significantly prolonged overall survival in patients with unresectable malignant pleural mesothelioma (MPM). We present patient-reported outcomes (PROs). Materials and Methods: Patients (N = 605) were randomized to nivolumab + ipilimumab or chemotherapy. Changes in disease-related symptom burden and health-related quality of life (HRQoL) were evaluated descriptively using the Lung Cancer Symptom Scale (LCSS)-Mesothelioma (Meso) average symptom burden index (ASBI), LCSS-Meso 3-item global index (3-IGI), 3-level EuroQol 5-dimensional (EQ-5D-3L) visual analog score (VAS), and EQ-5D-3L utility index. PROs were assessed at baseline and every 2 (nivolumab + ipilimumab) or 3 weeks (chemotherapy) through 12 weeks, every 6 weeks through 12 months, every 12 weeks thereafter, and at specified follow-ups. Mixed-effect model repeated measures (MMRM) and time to deterioration analyses were conducted. Results: Completion rates were generally > 80%. LCSS-Meso ASBI mean changes from baseline trended to improve over time with nivolumab + ipilimumab and deteriorate with chemotherapy, but did not meet clinically important difference thresholds [& PLUSMN;10 score change]. EQ-5D-3L VAS mean scores improved over time with nivolumab + ipilimumab; by week 60, patients had scores consistent with United Kingdom normal population values. MMRM analyses favored nivolumab + ipilimumab for all individual symptoms except cough. Nivolumab + ipilimumab delayed time to definitive deterioration in HRQoL (hazard ratio 0.52 [95% confidence interval 0.36-0.74]) and showed a trend in symptom delay versus chemotherapy. Conclusions: Nivolumab + ipilimumab decreased the risk of deterioration in disease-related symptoms and HRQoL versus chemotherapy and maintained QoL in patients with unresectable MPM. Show less
Background Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom... Show moreBackground Patient-reported outcome measures (PROMs) are becoming increasingly important in healthcare. In nephrology, there is no agreement on which chronic kidney disease (CKD) symptom questionnaire to use. Therefore, the aim of this study is to select a valid symptom questionnaire for routine assessment in patients with advanced CKD. Methods A four-phase mixed methods approach, using qualitative and quantitative research methods, was applied. First, a systematic literature search was conducted to retrieve existing symptom questionnaires. Second, a symptom list was created including all symptoms in existing questionnaires and symptoms mentioned in interviews with patients with CKD, from which symptom clusters were identified. Next, questionnaires were selected based on predefined criteria regarding content validity. Last, two online feedback panels of patients with CKD (n = 151) and experts (n = 6) reviewed the most promising questionnaires. Results The literature search identified 121 questionnaires, of which 28 were potentially suitable for symptom assessment in patients with advanced CKD. 101 unique symptoms and 10 symptom clusters were distinguished. Based on predefined criteria, the Dialysis Symptom Index (DSI) and Palliative Care Outcome Scale-Renal Version (IPOS-Renal) were selected and reviewed by feedback panels. Patients needed 5.4 and 7.5 min to complete the DSI and IPOS-Renal, respectively (p < 0.001). Patients experienced the DSI as more specific, complete and straightforward compared to the IPOS-Renal. Conclusions The DSI was found to be valid and reliable, the most relevant, complete, and comprehensible symptom questionnaire available for routine assessment in patients with advanced CKD. Routine PROMs collection could be of great value to healthcare, both at individual patient and national level. Feedback on scores and involvement of healthcare providers may promote adaptation and implementation in healthcare. Show less
