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Spontaneous reports of most distressing concerns in patients with inoperable lung cancer: at present, in retrospect and in comparison with EORTC-QLQ-C30+LC13

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Abstract

Patients with lung cancer experience considerable 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 concerns 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 changes over time. In addition to standardized questionnaires, individualized measures may be useful in the clinical palliative setting for providing detailed information about the individual’s problems and prioritizations.

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Abbreviations

HCS:

Health Care System

LC:

Lung cancer

QL:

Quality of life

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Acknowledgements

The authors thank the following sources for financial support: The Swedish Cancer Society, The Swedish Heart-Lung Foundation, The Swedish Foundation for Health Care Sciences and Allergy Research, The Research Board for Health Caring Sciences at Karolinska Institutet, and the Department of Neurobiology, Care Sciences and Society at Karolinska Institutet. We also thank Coop Sweden for their support. We would like to express our sincere thanks to Kristina Bertilsson and the other research team colleagues Helena Leveälahti, Ann Rudman and Joakim Öhlén for helpful input and discussions about categorization.

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Authors and Affiliations

  1. Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden

    Eva Broberger, Eva Doukkali & Mirjam A. G. Sprangers

  2. Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm, Sweden

    Carol Tishelman

  3. Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden

    Carol Tishelman

  4. Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands

    Mirjam A. G. Sprangers

  5. Department of Public Health and Caring Sciences, Psychosocial oncology, Uppsala University, Uppsala, Sweden

    Louise von Essen

Authors
  1. Eva Broberger
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  2. Carol Tishelman
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  3. Louise von Essen
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  4. Eva Doukkali
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  5. Mirjam A. G. Sprangers
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Correspondence to Eva Broberger.

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Broberger, E., Tishelman, C., von Essen, L. et al. Spontaneous reports of most distressing concerns in patients with inoperable lung cancer: at present, in retrospect and in comparison with EORTC-QLQ-C30+LC13. Qual Life Res 16, 1635–1645 (2007). https://doi.org/10.1007/s11136-007-9266-5

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  • DOI: https://doi.org/10.1007/s11136-007-9266-5

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