Patient-reported outcome measures: selection of a valid questionnaire for routine symptom assessment in patients with advanced chronic kidney disease - a four-phase mixed methods study.

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 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.

Failure to Rescue - a Closer Look at Mortality Rates Has No Added Value for Hospital Comparisons but Is Useful for Team Quality Assessment in Abdominal Aortic Aneurysm Surgery in The Netherlands.

OBJECTIVES: Failure to rescue (FTR) is a composite quality indicator, defined as the proportion of deceased patients following major complications. The aims of this study were to compare FTR with mortality for hospital comparisons in abdominal aortic aneurysm (AAA) surgery in The Netherlands and investigate hospital volume and associated factors. METHODS: Patients prospectively registered between 2013 and 2015 in the Dutch Surgical Aneurysm Audit (DSAA) were analysed. FTR was analysed for AAA patients and subgroups elective (EAAA) and acute (AAAA; symptomatic or ruptured) aneurysms. Variables and hospital volume were analysed by uni- and multivariable regression analysis. Adjusted hospital comparisons for mortality, major complications, and FTR were presented in funnel plots. Isomortality lines were constructed when presenting FTR and major complication rates. RESULTS: A total of 9258 patients were analysed in 61 hospitals: 7149 EAAA patients (77.2%) and 2109 AAAA patients (22.8%). There were 2785 (30.1%) patients with complications (unadjusted range 5-65% per hospital): 2161 (77.6%) with major and 624 (28.4%) patients with minor complications. Overall mortality was 6.6% (adjusted range 0-16% per hospital) and FTR was 28.4% (n = 613) (adjusted range 0-60% per hospital). Glasgow Coma Scale, age, pulse, creatinine, electrocardiography, and operative setting were independently associated with FTR. Hospital volume was not associated with FTR. In AAAA patients hospital volume was significantly associated with a lower adjusted major complication and mortality rate (OR 0.62, 95% CI 0.49-0.78; and 0.64, 95% CI 0.48-0.87). Four hospitals had a significant lower adjusted FTR with different major complication rates on different isomortality lines. CONCLUSIONS: There was more variation in FTR than in mortality between hospitals. FTR identified the same best performing hospitals as for mortality and therefore was of limited additional value in measuring quality of care for AAA surgery. FTR can be used for internal quality improvement with major complications in funnel plots and diagrams with isomortality lines.

National Comparison of Hospital Performances in Lung Cancer Surgery: The Role of Case Mix Adjustment.

BACKGROUND: When comparing hospitals on outcome indicators, proper adjustment for case mix (a combination of patient and disease characteristics) is indispensable. This study examines the need for case mix adjustment in evaluating hospital outcomes for non-small cell lung cancer surgery. METHODS: Data from the Dutch Lung Cancer Audit for Surgery were used to validate factors associated with postoperative 30-day mortality and complicated course with multivariable logistic regression models. Between-hospital variation in case mix was studied by calculating medians and interquartile ranges for separate factors on the hospital level and the "expected" outcomes per hospital as a composite measure. RESULTS: A total of 8,040 patients, distributed over 51 Dutch hospitals, were included for analysis. Mean observed postoperative mortality and complicated course were 2.2% and 13.6%, respectively. Age, American Society of Anesthesiologists classification, Eastern Cooperative Oncology Group performance score, lung function, extent of resection, tumor stage, and postoperative histopathologic findings were individual significant predictors for both outcomes of postoperative mortality and complicated course. A considerable variation of these case mix factors among hospital populations was observed, with the expected mortality and complicated course per hospital ranging from 1.4% to 3.2% and from 11.5% to 17.1%, respectively. CONCLUSIONS: The between-hospital variation in case mix of patients undergoing surgical treatment for non-small cell lung cancer emphasizes the importance of proper adjustment when comparing hospitals on outcome indicators.