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The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care

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Abstract

Purpose

The aim of the study was to further validate the Assessment of Quality of life at the End of Life (AQEL) questionnaire, to explore whether conceptually consistent scales could be confirmed and how the instrument relates to other widely used and validated HRQL instruments.

Methods

A total of 106 patients with lung cancer in palliative care completed the 20-item AQEL, the EORTC QLQ-C30, Hospital Anxiety and Depression Scale (HADS), Sense of Coherence (SOC-13) and Social Support Survey (SSS). Construct validity of the AQEL was tested by multitrait scaling, principal components analysis, inter-scale correlations and known-groups comparisons.

Results

Five scales were supported by multitrait scaling: Basic function, Activity, Emotional function, Cognitive function and Existential needs, with satisfactory (>.7) internal consistency for the latter three and intermediate (>.5) for the remaining two. A Social support scale was supported by principal components analysis, but exhibited a low internal consistency. Items on health care issues and physical symptoms worked best as individual items. Expected correlations with other instruments were found for all scales. Activity was sensitive to different levels of functioning as defined by performance status.

Conclusions

This study provided some evidence for the validity of the AQEL and its feasibility in patients with cancer in palliative care.

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References

  1. WHO. (2002). National Cancer Control Programmes. Policies and behavioural guidelines. http://www.who.int/cancer/media/en/408.pdf. Accessed January 29 2009.

  2. Haas, B. (1999). A multidisciplinary concept analysis of quality of life. Western Journal of Nursing Research, 21, 728–742.

    Article  CAS  PubMed  Google Scholar 

  3. Ferrel, B. (1996). The quality of lives: 1525 voices of cancer. Oncology Nursing Forum, 23, 909–916.

    Google Scholar 

  4. Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organisation for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–376.

    Article  CAS  PubMed  Google Scholar 

  5. Cella, D., Bonomi, A., Lloyd, S., Tulsky, D., Kaplan, E., & Bonomi, P. (1995). Reliability and validity of the Functional Assessment of Cancer Therapy-Lung (FACT-L) quality of life instrument. Lung Cancer, 12(3), 199–220.

    Article  CAS  PubMed  Google Scholar 

  6. Kaasa, S., & Loge, J. H. (2003). Quality of life in palliative care: principles and practice. Palliative Medicine, 17(1), 11–20.

    Article  PubMed  Google Scholar 

  7. Ferrell, B. R. (2005). Assessing health-related quality of life at the end of life. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcome assessments in cancer (pp. 264–285). Cambridge: Cambridge University press.

    Google Scholar 

  8. Groenvold, M., Petersen, M. A., Aaronson, N. K., Arraras, J. I., Blazeby, J. M., Bottomley, A., et al. (2006). The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care. European Journal of Cancer, 42(1), 55–64.

    Article  PubMed  Google Scholar 

  9. Echteld, M. A., Deliens, L., Onwuteaka-Philipsen, B., Klein, M., & van der Wal, G. (2006). EORTC QLQ-C15-PAL: The new standard in the assessment of health-related quality of life in advanced cancer? Palliative Medicine, 20(1), 1–2.

    Article  PubMed  Google Scholar 

  10. Sterkenburg, C. A., King, B., & Woodward, C. A. (1996). A reliability and validity study of the McMaster Quality of Life Scale (MQLS) for a palliative population. Journal of Palliative Care, 12(1), 18–25.

    CAS  PubMed  Google Scholar 

  11. McMillan, S. C., & Weitzner, M. (1998). Quality of life in cancer patients: Use of a revised Hospice Index. Cancer Pract, 6(5), 282–288.

    Article  CAS  PubMed  Google Scholar 

  12. Lyons, K. D., Bakitas, M., Hegel, M. T., Hanscom, B., Hull, J., & Ahles, T. A. (2009). Reliability and validity of the Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) scale. Journal of Pain and Symptom Management, 37(1), 23–32.

    Article  PubMed  Google Scholar 

  13. Axelsson, B., & Sjoden, P. O. (1999). Assessment of quality of life in palliative care-psychometric properties of a short questionnaire. Acta Oncologica, 38(2), 229–237.

    Article  CAS  PubMed  Google Scholar 

  14. Hately, J., Laurence, V., Scott, A., Baker, R., & Thomas, P. (2003). Breathlessness clinics within specialist palliative care settings can improve the quality of life and functional capacity of patients with lung cancer. Palliative Medicine, 17(5), 410–417.

    Article  PubMed  Google Scholar 

  15. Fayers, P., Aaronson, N. K., Bjordal, K., Groenvold, M., Curran, D., Bottomley, A. et al. (2001). The EORTC QLQ-C30 Scoring Manual. http://groups.eortc.be/qol/documentation_manuals.htm Accessed May 5, 2009.

  16. EORTC. The EORTC Quality of Life Group Modules. http://groups.eortc.be/qol/questionnaires_modules.htm. Accessed May 5, 2009.

  17. EORTC. The EORTC Quality of Life Group Bibliography. http://groups.eortc.be/qol/documentation_bibliography.htm. Accessed May 5, 2009.

  18. Ahlner-Elmqvist, M., Jordhoy, M. S., Bjordal, K., Jannert, M., & Kaasa, S. (2008). Characteristics and quality of life of patients who choose home care at the end of life. Journal of Pain and Symptom Management, 36(3), 217–227.

    Article  PubMed  Google Scholar 

  19. Verschuur, E. M., Steyerberg, E. W., Tilanus, H. W., Polinder, S., Essink-Bot, M. L., Tran, K. T., et al. (2009). Nurse-led follow-up of patients after oesophageal or gastric cardia cancer surgery: A randomised trial. British Journal of Cancer, 100(1), 70–76.

    Article  CAS  PubMed  Google Scholar 

  20. Nicklasson, M., & Bergman, B. (2007). Validity, reliability and clinical relevance of EORTC QLQ-C30 and LC13 in patients with chest malignancies in a palliative setting. Quality of Life Research, 16(6), 1019–1028.

    Article  PubMed  Google Scholar 

  21. Michelson, H., Bolund, C., Nilsson, B., & Brandberg, Y. (2000). Health-related quality of life measured by the EORTC QLQ-C30–reference values from a large sample of Swedish population. Acta Oncologica, 39(4), 477–484.

    Article  CAS  PubMed  Google Scholar 

  22. EORTC. (2008). The EORTC QLQ-C30 Reference Values Manual. http://groups.eortc.be/qol/downloads/reference_values_manual2008.pdf. Accessed May 5, 2009.

  23. Antonovsky, A. (1993). The structure and properties of the sense of coherence scale. Social Science and Medicine, 36(6), 725–733.

    Article  CAS  PubMed  Google Scholar 

  24. Pallant, J. F., & Lae, L. (2002). Sense of coherence, well-being, coping and personality factors: Further evaluation of the sense of coherence scale. Personality and Individual Differences, 33(1), 134–139.

    Article  Google Scholar 

  25. Thome, B., & Hallberg, I. R. (2004). Quality of life in older people with cancer—a gender perspective. European Journal of Cancer Care, 13(5), 454–463.

    Article  CAS  PubMed  Google Scholar 

  26. Tagay, V. S., Senf, W., Schopper, N., Mewes, R., Bockisch, A., & Gorges, R. (2007). Protective factors for anxiety and depression in thyroid cancer patients. Zeitschrift Fur Psychosomatische Medizin Und Psychotherapie, 53(1), 62–74.

    PubMed  Google Scholar 

  27. Sherbourne, C. D., & Stewart, A. L. (1991). The MOS social support survey. Social Science and Medicine, 32(6), 705–714.

    Article  CAS  PubMed  Google Scholar 

  28. Requena, G. C., Salamero, M., & Gil, F. (2007). Validity of the questionnaire MOS-SSS of social support in neoplastic patients. Medicina Clinica, 128(18), 687–691.

    Article  Google Scholar 

  29. Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.

    Article  CAS  PubMed  Google Scholar 

  30. Herrmann, C. (1997). International experiences with the Hospital Anxiety and Depression Scale—a review of validation data and clinical results. Journal of Psychosomatic Research, 42(1), 17–41.

    Article  CAS  PubMed  Google Scholar 

  31. Bergquist, H., Ruth, M., & Hammerlid, E. (2007). Psychiatric morbidity among patients with cancer of the esophagus or the gastro-esophageal junction: A prospective, longitudinal evaluation. Diseases of the Esophagus, 20, 523–529.

    Article  CAS  PubMed  Google Scholar 

  32. Helgesen, F., Andersson, S. O., Gustafsson, O., Varenhorst, E., Goben, B., Carnock, S., et al. (2000). Follow-up of prostate cancer patients by on-demand contacts with a specialist nurse—A randomized study. Scandinavian Journal of Urology and Nephrology, 34(1), 55–61.

    Article  CAS  PubMed  Google Scholar 

  33. Bergman, B., Sullivan, M., & Sorenson, S. (1991). Quality of life during chemotherapy for small cell lung cancer. I. An evaluation with generic health measures. Acta Oncologica, 30(8), 947–957.

    Article  CAS  PubMed  Google Scholar 

  34. World Health Organization. (1979). WHO handbook for reporting results of cancer treatment (Vol. 48). Geneva: WHO Offset Publication.

    Google Scholar 

  35. Fayers, P., & Machin, D. (2000). Quality of life assessment, analysis and interpretation. New York: John Wiley & Sons Ltd.

    Google Scholar 

  36. Polit, D., & Beck, C. (2004). Nursing research: Principles and methods (7th ed.). London: Lippincott Williams & Wilking.

    Google Scholar 

  37. Burns, N., & Grove, S. (2001). The practice of nursing research. Conduct, critique & utilization (4th ed.). Philadelphia: WB Saunders Company.

    Google Scholar 

  38. Kline, P. (1998). The new psychometrics, science, psychology and measurement. London: Routledge.

    Google Scholar 

  39. Tishelman, C., Lövgren, M., Broberger, E., Hamberg, K., Sprangers, M. Are the most distressing concerns of men and women with inoperable lung cancer adequately assessed? A mixed-methods study. Submitted.

  40. Garman, K. S., & Cohen, H. J. (2002). Functional status and the elderly cancer patient. Critical Reviews in Oncology/hematology, 43(3), 191–208.

    Article  PubMed  Google Scholar 

  41. McMillan, S. C., & Weitzner, M. (2000). How problematic are various aspects of quality of life in patients with cancer at the end of life? Oncology Nursing Forum, 27(5), 817–823.

    CAS  PubMed  Google Scholar 

  42. Smith, E. M., Gomm, S. A., & Dickens, C. M. (2003). Assessing the independent contribution to quality of life from anxiety and depression in patients with advanced cancer. Palliative Medicine, 17(6), 509–513.

    Article  CAS  PubMed  Google Scholar 

  43. Smith, K. W., Avis, N. E., & Assmann, S. F. (1999). Distinguishing between quality of life and health status in quality of life research: A meta-analysis. Quality of Life Research, 8(5), 447–459.

    Article  CAS  PubMed  Google Scholar 

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Author information

Authors and Affiliations

  1. Bräcke Diakoni Foundation, Research Unit, Box 210 62, 418 04, Göteborg, Sweden

    Ingela Henoch

  2. Karolinska Institutet, Institution of Learning, Informatics, Management and Ethics, Medical Management Centre, Stockholm, Sweden

    Ingela Henoch

  3. FoU-unit, Mid-Sweden University, Östersund, Sweden

    Bertil Axelsson

  4. Institution of Radiation Sciences, Umeå University, Umeå, Sweden

    Bertil Axelsson

  5. Department of Respiratory Medicine and Allergology, Sahlgrenska Academy, Göteborg University, Göteborg, Sweden

    Bengt Bergman

Authors
  1. Ingela Henoch
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  2. Bertil Axelsson
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  3. Bengt Bergman
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Correspondence to Ingela Henoch.

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Henoch, I., Axelsson, B. & Bergman, B. The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care. Qual Life Res 19, 739–750 (2010). https://doi.org/10.1007/s11136-010-9623-7

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