The Leuven questionnaire for Patient Self-care during Chemotherapy (L-PaSC): Instrument development and psychometric evaluation Annemarie Coolbrandt a, * , Koen Van den Heede b , Kathleen Clemens c , Koen Milisen c , Annouschka Laenen d , Hans Wildiers a , Chris Verslype e a Department of Oncology, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium b Nursing Competence Center, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium c Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35/4, 3000 Leuven, Belgium d Interuniversity Centre for Biostatistics and Statistical Bioinformatics, Katholieke universiteit Leuven, Kapucijnenvoer 35/2, Bus 700, 3000 Leuven, Belgium e Department of Hepatology, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium Keywords: Patient education Chemotherapy Self-care Self management Instrument Psychometric Validity abstract Purpose: Since chemotherapy has largely become an outpatient treatment, adequate self-management is of great importance. Available instruments focus exclusively on dealing with side effects. However, self- care during chemotherapy not only concerns symptom self-management. The aim of this study was to develop a valid instrument to assess patient self-care during chemotherapy. Method: First, we developed a topic list for our construct by performing a theory and literature review. Second, an expert panel of nine oncologists and oncology nurses evaluated content validity of the developing construct and its items using a triple Delphi procedure. A preliminary psychometric evalu- ation in 144 patients allowed identification and correction of items with poor psychometric properties. A convenience sample of 448 patients was used to evaluate item statistics (item difficulty), reliability (Cronbach alpha) and construct validity (exploratory factor analysis) of the final instrument. Results: We developed a 22-item instrument with 7 themes expressing the most relevant aspects of patient self-care during chemotherapy. Seven items cover symptom self-management, while 15 items reflect other aspects of self-care during chemotherapy. Content validity was excellent (CVI ¼ 0.78e1.00). Item difficulty index of the questions ranged from 0.17 to 0.89. Internal consistency is acceptable (Cronbach alpha ¼ 0.76). Exploratory factor analysis defines two underlying factors: adhering to treat- ment recommendations and managing treatment-related negative events on the one hand, and relieving symptoms on the other hand. Conclusions: The L-PaSC demonstrated good content validity and psychometric properties. The L-PaSC can be applied in research and clinical practice for evaluating patient self-care during chemotherapy. Ó 2012 Elsevier Ltd. All rights reserved. Introduction Since the vast majority of chemotherapy patients are treated as outpatients or during short hospital stays, adequate self- management is critical. Chemotherapy patients need to be able to act adequately upon health issues (adverse events, complications arising from treatment effects, induction of co morbidity, etc) without professional supervision. At the same time, they must cope with their cancer diagnosis. Because of the outpatient organization of chemotherapy care, healthcare professionals have only limited time and opportunities to enhance patients’ self-management through education. In 1983, Dodd noted that chemotherapy patients perform very few self-care actions despite the many chemotherapy-related symptoms they experience (Dodd, 1983). She also found that patients wait to initiate self-care behaviors until symptoms become severe or persistent. Persistence and interference were recently confirmed to be predictors of enactment of symptom management strategies. Also, patients with more symptoms seem to enact fewer symptom management strategies (Given et al., 2010). Suggested reasons for poor self-care behavior are: patients’ belief that side effects just have to be endured, patients’ reluctance to complain, professionals’ reluctance to tell patients what actions could alle- viate side effects, and patients’ poor recall of self-care information provided to them (Dodd, 1983). Research on pain and fatigue management in cancer patients has found that patients’ reluctance to report symptoms and patients’ misconceptions about their * Corresponding author. Tel.: þ32 16 341314; fax: þ32 16 346772. E-mail address: annemarie.coolbrandt@uzleuven.be (A. Coolbrandt). Contents lists available at SciVerse ScienceDirect European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon 1462-3889/$ e see front matter Ó 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2012.07.008 European Journal of Oncology Nursing 17 (2013) 275e283