Spontaneous reports of most distressing concerns in patients with inoperable lung cancer: at present, in retrospect and in comparison with EORTC-QLQ-C30+LC13 Eva Broberger Æ Carol Tishelman Æ Louise von Essen Æ Eva Doukkali Æ Mirjam A. G. Sprangers Accepted: 11 September 2007 / Published online: 6 October 2007 Ó Springer Science+Business Media B.V. 2007 Abstract Patients with lung cancer experience consider- able distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their con- cerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC- QLQ-C30+LC13 questionnaires. Furthermore, patients’ reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of comparable EORTC-QLQ-C30+LC13 items. These results indicate that items included in standardized measures are not always adequate to assess patients’ concerns, priorities and chan- ges over time. In addition to standardized questionnaires, individualized measures may be useful in the clinical pal- liative setting for providing detailed information about the individual’s problems and prioritizations. Keywords Change Á Distress Á Freelisting Á Lung cancer Abbreviations HCS Health Care System LC Lung cancer QL Quality of life Introduction Lung cancer (LC) is the leading cause of cancer-associated mortality globally. This high mortality is associated with diagnosis in advanced stages of the disease, with no cura- tive treatment available for most patients. Palliative care is therefore often essential from diagnosis through the disease trajectory as these patients experience high levels of a wide range of symptoms [1–5]. While it is expected that patients recently diagnosed with inoperable LC will experience distress, their values and priorities concerning quality of life (QL) issues may change during the disease trajectory. Therefore accurate methods for assessing and evaluating distress and QL over time may play a key role for man- aging and evaluating palliative care. E. Broberger (&) Á E. Doukkali Á M. A. G. Sprangers Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden e-mail: eva.broberger@ki.se C. Tishelman Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm, Sweden C. Tishelman Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden M. A. G. Sprangers Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands L. von Essen Department of Public Health and Caring Sciences, Psychosocial oncology, Uppsala University, Uppsala, Sweden 123 Qual Life Res (2007) 16:1635–1645 DOI 10.1007/s11136-007-9266-5