Skip to main content
Erschienen in: Supportive Care in Cancer 9/2018

21.03.2018 | Original Article

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

verfasst von: Ala’ S. Aburub, B. Gagnon, S. Ahmed, A. M. Rodríguez, Nancy E. Mayo

Erschienen in: Supportive Care in Cancer | Ausgabe 9/2018

Einloggen, um Zugang zu erhalten

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.
Literatur
1.
Zurück zum Zitat 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):1693–1699CrossRefPubMed 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):1693–1699CrossRefPubMed
2.
Zurück zum Zitat Heydarnejad MS, Hassanpour DA, Solati DK (2011) Factors affecting quality of life in cancer patients undergoing chemotherapy. Afr Health Sci 11(2):266–270PubMedPubMedCentral Heydarnejad MS, Hassanpour DA, Solati DK (2011) Factors affecting quality of life in cancer patients undergoing chemotherapy. Afr Health Sci 11(2):266–270PubMedPubMedCentral
3.
Zurück zum Zitat 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):220–225CrossRefPubMedPubMedCentral 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):220–225CrossRefPubMedPubMedCentral
4.
Zurück zum Zitat Lindblad AK, Ring L, Glimelius B, Hansson MG (2002) Focus on the individual—quality of life assessments in oncology. Acta Oncol 41(6):507–516CrossRefPubMed Lindblad AK, Ring L, Glimelius B, Hansson MG (2002) Focus on the individual—quality of life assessments in oncology. Acta Oncol 41(6):507–516CrossRefPubMed
5.
Zurück zum Zitat Levine MN, Ganz PA (2002) Beyond the development of quality-of-life instruments: where do we go from here? J Clin Oncol 20(9):2215–2216CrossRefPubMed Levine MN, Ganz PA (2002) Beyond the development of quality-of-life instruments: where do we go from here? J Clin Oncol 20(9):2215–2216CrossRefPubMed
6.
Zurück zum Zitat 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):595–603CrossRefPubMed 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):595–603CrossRefPubMed
7.
Zurück zum Zitat 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):365–376CrossRefPubMed 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):365–376CrossRefPubMed
8.
Zurück zum Zitat 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):1407–1418CrossRefPubMed 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):1407–1418CrossRefPubMed
9.
Zurück zum Zitat 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):1447–1462CrossRefPubMed 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):1447–1462CrossRefPubMed
10.
Zurück zum Zitat Soni MK, Cella D (2002) Quality of life and symptom measures in oncology: an overview. Am J Manag Care 8(18 Suppl):S560–S573PubMed Soni MK, Cella D (2002) Quality of life and symptom measures in oncology: an overview. Am J Manag Care 8(18 Suppl):S560–S573PubMed
11.
Zurück zum Zitat 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):1091–1104CrossRefPubMed 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):1091–1104CrossRefPubMed
12.
Zurück zum Zitat 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):1–11CrossRefPubMed 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):1–11CrossRefPubMed
13.
Zurück zum Zitat Naus MJ, Ishler MD, Parrott CE, Kovacs SA (2009) Cancer survivor adaptation model: conceptualizing cancer as a chronic illness. J Clin Psychol 65(12):1350–1359CrossRefPubMed Naus MJ, Ishler MD, Parrott CE, Kovacs SA (2009) Cancer survivor adaptation model: conceptualizing cancer as a chronic illness. J Clin Psychol 65(12):1350–1359CrossRefPubMed
14.
Zurück zum Zitat Sprangers MA, Schwartz CE (1999) Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 48(11):1507–1515CrossRefPubMed Sprangers MA, Schwartz CE (1999) Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med 48(11):1507–1515CrossRefPubMed
15.
Zurück zum Zitat Schwartz CE, Rapkin BD (2004) Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health Qual Life Outcomes 2:16CrossRefPubMedPubMedCentral Schwartz CE, Rapkin BD (2004) Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health Qual Life Outcomes 2:16CrossRefPubMedPubMedCentral
16.
Zurück zum Zitat 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):55–62CrossRefPubMed 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):55–62CrossRefPubMed
17.
Zurück zum Zitat 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):561–570CrossRefPubMed 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):561–570CrossRefPubMed
18.
Zurück zum Zitat 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):465–471CrossRefPubMed 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):465–471CrossRefPubMed
19.
Zurück zum Zitat Barclay-Goddard R, Epstein JD, Mayo NE (2009) Response shift: a brief overview and proposed research priorities. Qual Life Res 18(3):335–346CrossRefPubMed Barclay-Goddard R, Epstein JD, Mayo NE (2009) Response shift: a brief overview and proposed research priorities. Qual Life Res 18(3):335–346CrossRefPubMed
20.
Zurück zum Zitat 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):1354–1359CrossRefPubMed 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):1354–1359CrossRefPubMed
21.
Zurück zum Zitat 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):319–329CrossRefPubMed 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):319–329CrossRefPubMed
22.
Zurück zum Zitat Rodriguez AM, Mayo NE, Gagnon B (2013) Independent contributors to overall quality of life in people with advanced cancer. Br J Cancer 108(9):1790–1800CrossRefPubMed Rodriguez AM, Mayo NE, Gagnon B (2013) Independent contributors to overall quality of life in people with advanced cancer. Br J Cancer 108(9):1790–1800CrossRefPubMed
23.
Zurück zum Zitat 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):437–445CrossRefPubMed 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):437–445CrossRefPubMed
24.
Zurück zum Zitat 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):1109–1126CrossRefPubMed 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):1109–1126CrossRefPubMed
25.
Zurück zum Zitat 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):1523–1532CrossRefPubMed 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):1523–1532CrossRefPubMed
26.
Zurück zum Zitat 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):6–9PubMed 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):6–9PubMed
27.
Zurück zum Zitat 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):1854–1865CrossRefPubMed 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):1854–1865CrossRefPubMed
28.
Zurück zum Zitat 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):207–219CrossRefPubMed 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):207–219CrossRefPubMed
29.
Zurück zum Zitat 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):576–586CrossRefPubMed 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):576–586CrossRefPubMed
30.
31.
Zurück zum Zitat 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):e31115CrossRefPubMedPubMedCentral 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):e31115CrossRefPubMedPubMedCentral
32.
Zurück zum Zitat 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):77–83CrossRefPubMed 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):77–83CrossRefPubMed
33.
Zurück zum Zitat 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):203–220CrossRefPubMed 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):203–220CrossRefPubMed
34.
Zurück zum Zitat 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 1:43CrossRefPubMedPubMedCentral 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 1:43CrossRefPubMedPubMedCentral
35.
Zurück zum Zitat 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):69–75CrossRefPubMed 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):69–75CrossRefPubMed
36.
Zurück zum Zitat 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 47:144–153CrossRefPubMed 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 47:144–153CrossRefPubMed
37.
Zurück zum Zitat 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):631–636CrossRefPubMed 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):631–636CrossRefPubMed
38.
Zurück zum Zitat Middleton A, Fritz SL, Lusardi M (2015) Walking speed: the functional vital sign. J Aging Phys Act 23(2):314–322CrossRefPubMed Middleton A, Fritz SL, Lusardi M (2015) Walking speed: the functional vital sign. J Aging Phys Act 23(2):314–322CrossRefPubMed
39.
Zurück zum Zitat Fritz S, Lusardi M (2009) White paper: “walking speed: the sixth vital sign”. J Geriatr Phys Ther 32(2):46–49CrossRefPubMed Fritz S, Lusardi M (2009) White paper: “walking speed: the sixth vital sign”. J Geriatr Phys Ther 32(2):46–49CrossRefPubMed
40.
Zurück zum Zitat 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):705–715CrossRefPubMed 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):705–715CrossRefPubMed
41.
Zurück zum Zitat Cummins R (2000) Personal income and subjective well-being: a review. J Happiness Stud 1:133–158CrossRef Cummins R (2000) Personal income and subjective well-being: a review. J Happiness Stud 1:133–158CrossRef
42.
Zurück zum Zitat 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):2247–2257CrossRefPubMed 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):2247–2257CrossRefPubMed
43.
Zurück zum Zitat Howard GS, Dailey P (1979) Response-shift bias: a source of contamination of self-report measures. J Appl Psychol 64:144–150CrossRef Howard GS, Dailey P (1979) Response-shift bias: a source of contamination of self-report measures. J Appl Psychol 64:144–150CrossRef
44.
Zurück zum Zitat 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):601–609CrossRefPubMed 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):601–609CrossRefPubMed
Metadaten
Titel
Impact of reconceptualization response shift on rating of quality of life over time among people with advanced cancer
verfasst von
Ala’ S. Aburub
B. Gagnon
S. Ahmed
A. M. Rodríguez
Nancy E. Mayo
Publikationsdatum
21.03.2018
Verlag
Springer Berlin Heidelberg
Erschienen in
Supportive Care in Cancer / Ausgabe 9/2018
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-018-4156-7

Weitere Artikel der Ausgabe 9/2018

Supportive Care in Cancer 9/2018 Zur Ausgabe

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.