Impact of reconceptualization response shift on rating of quality of life over time among people with advanced cancer

  • Ala’ S. Aburub
  • B. Gagnon
  • S. Ahmed
  • A. M. Rodríguez
  • Nancy E. Mayo
Original Article
  • 40 Downloads

Abstract

Background

People with cancer may experience change in what constitutes quality of life (QOL) over time as a result of the cancer progression (true change) or adaptation to the experience, considered as a response shift phenomenon. As individualized measures are ideally suited to explore response shift, this study aimed to estimate the extent to which reconceptualization response shift occurred over time in a cancer population and the impact of this response shift on estimates of change on QOL measures.

Methods

Ninety-seven people with advanced cancer completed the study measures including the Patient-Generated Index (PGI) at diagnosis (T0) and 1 year later (T1). The response shift indicator was the change in the number of areas nominated (range − 4 to + 3). Multivariate linear regression was used to estimate the effect of changing areas on change in the PGI score, single indicators of global QOL, and the EQ-5Dindex adjusted for age and sex.

Results

Approximately 72% of people in this sample either added or dropped areas over time. People who dropped more than two areas had higher PGI scores at T1 than T0 while people who added areas showed low PGI score.

Conclusion

The results are consistent with the PGI framework as areas nominated tend to focus on negative aspects of QOL.

Keywords

Response shift Reconceptualization Individualized measures Patient-Generated Index (PGI) Quality of life 

Notes

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

References

  1. 1.
    Joly F, McAlpine J, Nout R, Åvall-Lundqvist E, Shash E, Friedlander M, Gynaecologic Cancer InterGroup (GCIG) (2014) Quality of life and patient-reported outcomes in endometrial cancer clinical trials: a call for action! Int J Gynecol Cancer 24(9):1693–1699CrossRefPubMedGoogle Scholar
  2. 2.
    Heydarnejad MS, Hassanpour DA, Solati DK (2011) Factors affecting quality of life in cancer patients undergoing chemotherapy. Afr Health Sci 11(2):266–270PubMedPubMedCentralGoogle Scholar
  3. 3.
    Helgesson O, Lissner L, Månsson J, Bengtsson C (2007) Quality of life in cancer survivors as observed in a population study of Swedish women. Scand J Prim Health Care 25(4):220–225CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Lindblad AK, Ring L, Glimelius B, Hansson MG (2002) Focus on the individual—quality of life assessments in oncology. Acta Oncol 41(6):507–516CrossRefPubMedGoogle Scholar
  5. 5.
    Levine MN, Ganz PA (2002) Beyond the development of quality-of-life instruments: where do we go from here? J Clin Oncol 20(9):2215–2216CrossRefPubMedGoogle Scholar
  6. 6.
    Patel KK, Veenstra DL, Patrick DL (2003) A review of selected patient-generated outcome measures and their application in clinical trials. Value Health 6(5):595–603CrossRefPubMedGoogle Scholar
  7. 7.
    Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, Haes JCJM, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85(5):365–376CrossRefPubMedGoogle Scholar
  8. 8.
    Cella D, Hernandez L, Bonomi AE, Corona M, Vaquero M, Shiomoto G, Baez L (1998) Spanish language translation and initial validation of the functional assessment of cancer therapy quality-of-life instrument. Med Care 36(9):1407–1418CrossRefPubMedGoogle Scholar
  9. 9.
    Bowling A (1995) What things are important in people’s lives? A survey of the public’s judgements to inform scales of health related quality of life. Soc Sci Med 41(10):1447–1462CrossRefPubMedGoogle Scholar
  10. 10.
    Soni MK, Cella D (2002) Quality of life and symptom measures in oncology: an overview. Am J Manag Care 8(18 Suppl):S560–S573PubMedGoogle Scholar
  11. 11.
    Aburub AS, Mayo NE (2017) A review of the application, feasibility, and the psychometric properties of the individualized measures in cancer. Qual Life Res 26(5):1091–1104CrossRefPubMedGoogle Scholar
  12. 12.
    Dabakuyo TS, Guillemin F, Conroy T, Velten M, Jolly D, Mercier M, Causeret S, Cuisenier J, Graesslin O, Gauthier M, Bonnetain F (2013) Response shift effects on measuring post-operative quality of life among breast cancer patients: a multicenter cohort study. Qual Life Res 22(1):1–11CrossRefPubMedGoogle Scholar
  13. 13.
    Naus MJ, Ishler MD, Parrott CE, Kovacs SA (2009) Cancer survivor adaptation model: conceptualizing cancer as a chronic illness. J Clin Psychol 65(12):1350–1359CrossRefPubMedGoogle Scholar
  14. 14.
    Sprangers MA, Schwartz CE (1999) Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 48(11):1507–1515CrossRefPubMedGoogle Scholar
  15. 15.
    Schwartz CE, Rapkin BD (2004) Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health Qual Life Outcomes 2:16CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Sprangers MA (1996) Response-shift bias: a challenge to the assessment of patients’ quality of life in cancer clinical trials. Cancer Treat Rev 22(Suppl A):55–62CrossRefPubMedGoogle Scholar
  17. 17.
    Ahmed S, E. Mayo N, Wood-Dauphinee S, Hanley JA, Robin Cohen S (2004) Response shift influenced estimates of change in health-related quality of life poststroke. J Clin Epidemiol 57(6):561–570CrossRefPubMedGoogle Scholar
  18. 18.
    Ubel PA, Peeters Y, Smith D (2010) Abandoning the language of “response shift”: a plea for conceptual clarity in distinguishing scale recalibration from true changes in quality of life. Qual Life Res 19(4):465–471CrossRefPubMedGoogle Scholar
  19. 19.
    Barclay-Goddard R, Epstein JD, Mayo NE (2009) Response shift: a brief overview and proposed research priorities. Qual Life Res 18(3):335–346CrossRefPubMedGoogle Scholar
  20. 20.
    Camilleri-Brennan J, Ruta DA, Steele RJ (2002) Patient generated index: new instrument for measuring quality of life in patients with rectal cancer. World J Surg 26(11):1354–1359CrossRefPubMedGoogle Scholar
  21. 21.
    Tavernier SS, Beck SL, Clayton MF, Pett MA, Berry DL (2011) Validity of the Patient Generated Index as a quality-of-life measure in radiation oncology. Oncol Nurs Forum 38(3):319–329CrossRefPubMedGoogle Scholar
  22. 22.
    Rodriguez AM, Mayo NE, Gagnon B (2013) Independent contributors to overall quality of life in people with advanced cancer. Br J Cancer 108(9):1790–1800CrossRefPubMedGoogle Scholar
  23. 23.
    Aburub AS et al (2016) Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer. Support Care Cancer 24(1):437–445CrossRefPubMedGoogle Scholar
  24. 24.
    Ruta DA, Garratt AM, Leng M, Russell IT, MacDonald L (1994) A new approach to the measurement of quality of life: the Patient-Generated Index. Med Care 32(11):1109–1126CrossRefPubMedGoogle Scholar
  25. 25.
    Walters SJ, Brazier JE (2005) Comparison of the minimally important difference for two health state utility measures: EQ-5D and SF-6D. Qual Life Res 14(6):1523–1532CrossRefPubMedGoogle Scholar
  26. 26.
    Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7(2):6–9PubMedGoogle Scholar
  27. 27.
    Cohen SR, Mount BM (2000) Living with cancer: “good” days and “bad” days—what produces them? Can the McGill quality of life questionnaire distinguish between them? Cancer 89(8):1854–1865CrossRefPubMedGoogle Scholar
  28. 28.
    Cohen SR, Mount BM, Strobel MG, Bui F (1995) The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 9(3):207–219CrossRefPubMedGoogle Scholar
  29. 29.
    Cohen SR, Mount BM, Tomas JJN, Mount LF (1996) Existential well-being is an important determinant of quality of life. Evidence from the McGill quality of life questionnaire. Cancer 77(3):576–586CrossRefPubMedGoogle Scholar
  30. 30.
    Dolan P (1997) Modeling valuations for EuroQol health states. Med Care 35(11):1095–1108CrossRefPubMedGoogle Scholar
  31. 31.
    Bansback N, Tsuchiya A, Brazier J, Anis A (2012) Canadian valuation of EQ-5D health states: preliminary value set and considerations for future valuation studies. PLoS One 7(2):e31115CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Oremus M, Tarride JE, Clayton N, Canadian Willingness-to-Pay Study Group, Raina P (2014) Health utility scores in Alzheimer’s disease: differences based on calculation with American and Canadian preference weights. Value Health 17(1):77–83CrossRefPubMedGoogle Scholar
  33. 33.
    Shaw JW, Johnson JA, Coons SJ (2005) US valuation of the EQ-5D health states: development and testing of the D1 valuation model. Med Care 43(3):203–220CrossRefPubMedGoogle Scholar
  34. 34.
    Poissant L, Mayo NE, Wood-Dauphinee S, Clarke AE (2003) The development and preliminary validation of a Preference-Based Stroke Index (PBSI). Health Qual Life Outcomes 1:43CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Arcuri JF, Borghi-Silva A, Labadessa IG, Sentanin AC, Candolo C, Pires di Lorenzo VA (2016) Validity and reliability of the 6-minute step test in healthy individuals: a cross-sectional study. Clin J Sport Med 26(1):69–75CrossRefPubMedGoogle Scholar
  36. 36.
    Guerra-Balic M, Oviedo GR, Javierre C, Fortuño J, Barnet-López S, Niño O, Alamo J, Fernhall B (2015) Reliability and validity of the 6-min walk test in adults and seniors with intellectual disabilities. Res Dev Disabil 47:144–153CrossRefPubMedGoogle Scholar
  37. 37.
    Schmidt K, Vogt L, Thiel C, Jäger E, Banzer W (2013) Validity of the six-minute walk test in cancer patients. Int J Sports Med 34(7):631–636CrossRefPubMedGoogle Scholar
  38. 38.
    Middleton A, Fritz SL, Lusardi M (2015) Walking speed: the functional vital sign. J Aging Phys Act 23(2):314–322CrossRefPubMedGoogle Scholar
  39. 39.
    Fritz S, Lusardi M (2009) White paper: “walking speed: the sixth vital sign”. J Geriatr Phys Ther 32(2):46–49CrossRefPubMedGoogle Scholar
  40. 40.
    Martin F, Camfield L, Rodham K, Kliempt P, Ruta D (2007) Twelve years’ experience with the Patient Generated Index (PGI) of quality of life: a graded structured review. Qual Life Res 16(4):705–715CrossRefPubMedGoogle Scholar
  41. 41.
    Cummins R (2000) Personal income and subjective well-being: a review. J Happiness Stud 1:133–158CrossRefGoogle Scholar
  42. 42.
    Ahmed S, Mayo NE, Wood-Dauphinee S, Hanley JA, Cohen SR (2005) Using the patient generated index to evaluate response shift post-stroke. Qual Life Res 14(10):2247–2257CrossRefPubMedGoogle Scholar
  43. 43.
    Howard GS, Dailey P (1979) Response-shift bias: a source of contamination of self-report measures. J Appl Psychol 64:144–150CrossRefGoogle Scholar
  44. 44.
    Mayo NE, Aburub A’, Brouillette MJ, Kuspinar A, Moriello C, Rodriguez AM, Scott S (2017) In support of an individualized approach to assessing quality of life: comparison between Patient Generated Index and standardized measures across four health conditions. Qual Life Res 26(3):601–609CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Ala’ S. Aburub
    • 1
  • B. Gagnon
    • 2
  • S. Ahmed
    • 3
  • A. M. Rodríguez
    • 4
  • Nancy E. Mayo
    • 5
  1. 1.School of Physical and Occupational Therapy, Division of Clinical Epidemiology, Royal Victoria Hospital SiteMcGill UniversityMontrealCanada
  2. 2.Département de médecine familiale et de médecine d’urgence, Centre de Recherche sur le Cancer, Centre de recherche du CHU de QuébecUniversite LavalQuébecCanada
  3. 3.School of Physical and Occupation Therapy, Division of Clinical Epidemiology, Centre de recherche interdisciplinaire réadaptation (CRIR) constance Lethbridge rehabilitaion CenterMcGill University Health CentreMontrealCanada
  4. 4.School of Rehabilitation SciencesMcGill UniversityMontrealCanada
  5. 5.Division of Clinical Epidemiology, Royal Victoria Hospital SiteMcGill University Health CenterMontrealCanada

Personalised recommendations