Skip to main content
Top
Gepubliceerd in: Quality of Life Research 5/2015

01-05-2015 | Commentary

How recent health-related life events affected my perspective on quality-of-life research

Auteur: Mirjam A. G. Sprangers

Gepubliceerd in: Quality of Life Research | Uitgave 5/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Excerpt

It is a great honor and pleasure to receive the 2014 President’s Award of the International Society for Quality of Life Research (ISOQOL). For this Award, I am indebted to many people. First, I would like to thank the ISOQOL Scientific Community for providing the platform for information and stimulation, and the ISOQOL Organization for making this possible. A particular thank you goes to George and Laura Degnon who supported ISOQOL professionally at the time I was board member and President. They trained and coached the board members to become more effective leaders. I have learned a great deal from them. I also would like to thank my ISOQOL colleagues and friends who make work and these conferences so interesting and enjoyable. Where I consider ISOQOL to be my international scientific family, the European Organization for Research and Treatment for Cancer (EORTC) Quality of Life Group is my European scientific family. I am very fond of its members and find them inspiring. …
Literatuur
1.
go back to reference Jonkergouw, T. (2012). Licht voor een heel jaar. Leiden: Sprangers. Jonkergouw, T. (2012). Licht voor een heel jaar. Leiden: Sprangers.
2.
go back to reference Jonkergouw, T. (2012). Echte ziektewinst. Leiden: Sprangers. Jonkergouw, T. (2012). Echte ziektewinst. Leiden: Sprangers.
3.
go back to reference Jonkergouw, T. (2013). Twee kapiteins op één schip. Directeuren en voorzitters van non-profitorganisaties. Assen: Koninklijke Van Gorcum B.V. Jonkergouw, T. (2013). Twee kapiteins op één schip. Directeuren en voorzitters van non-profitorganisaties. Assen: Koninklijke Van Gorcum B.V.
4.
7.
go back to reference Reeve, B., Hays, R. D., Bjorner, J., Cook, K., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the Patient-Reported Outcome Measurement Information System (PROMIS). Medical Care, 45(5), S22–S31.CrossRefPubMed Reeve, B., Hays, R. D., Bjorner, J., Cook, K., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the Patient-Reported Outcome Measurement Information System (PROMIS). Medical Care, 45(5), S22–S31.CrossRefPubMed
8.
go back to reference Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). Initial item banks and first wave testing of the Patient-Reported Outcomes Measurement Information System (PROMIS) network: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedCentralPubMed Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). Initial item banks and first wave testing of the Patient-Reported Outcomes Measurement Information System (PROMIS) network: 2005–2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedCentralPubMed
9.
go back to reference Ricoeur, P. (1992). Oneself as another. Chicago and London: The University of Chicago Press. Ricoeur, P. (1992). Oneself as another. Chicago and London: The University of Chicago Press.
10.
go back to reference Straub, J. (2005). Telling stories, making history: Toward a narrative psychology of the historical construction of meaning. In J. Straub (Ed.), Narration, identity, and historical consciousness (pp. 44–97). Oxford/New York: Berghahn Books. Straub, J. (2005). Telling stories, making history: Toward a narrative psychology of the historical construction of meaning. In J. Straub (Ed.), Narration, identity, and historical consciousness (pp. 44–97). Oxford/New York: Berghahn Books.
11.
go back to reference Hektner, J. M., Schmidt, J. A., & Csikszentmihalyi, M. (2007). Experience sampling method: Measuring the quality of everyday life. London: Sage. Hektner, J. M., Schmidt, J. A., & Csikszentmihalyi, M. (2007). Experience sampling method: Measuring the quality of everyday life. London: Sage.
12.
go back to reference Shiffman, S., Stone, A. A., & Hufford, M. R. (2008). Ecological momentary assessment. Annual Review of Clinical Psychology, 4, 1–32.CrossRefPubMed Shiffman, S., Stone, A. A., & Hufford, M. R. (2008). Ecological momentary assessment. Annual Review of Clinical Psychology, 4, 1–32.CrossRefPubMed
13.
go back to reference Jones, M., O’Connor, D., Schwartz, J., Johnston, D., French, D., & de Bruin, M. (2012). Opportunities and challenges in real-time data capture: Methods in health psychology symposium II. The European Health Psychologist, 14(4), 93–99. Jones, M., O’Connor, D., Schwartz, J., Johnston, D., French, D., & de Bruin, M. (2012). Opportunities and challenges in real-time data capture: Methods in health psychology symposium II. The European Health Psychologist, 14(4), 93–99.
14.
go back to reference Myin-Germeys, I., Oorschot, M., Collip, D., Lataster, J., Delespaul, P., & Van Os, J. (2009). Experience sampling research in psychopathology: Opening the black box of daily life. Psychological Medicine, 39(9), 1533–1547.CrossRefPubMed Myin-Germeys, I., Oorschot, M., Collip, D., Lataster, J., Delespaul, P., & Van Os, J. (2009). Experience sampling research in psychopathology: Opening the black box of daily life. Psychological Medicine, 39(9), 1533–1547.CrossRefPubMed
15.
go back to reference Sprangers, M. A. G., & Schwartz, C. E. (2008). Reflections on changeability versus stability of health-related quality of life: Distinguishing between its environmental and genetic components. Health and Quality of Life Outcomes, 6(1), 89.CrossRefPubMedCentralPubMed Sprangers, M. A. G., & Schwartz, C. E. (2008). Reflections on changeability versus stability of health-related quality of life: Distinguishing between its environmental and genetic components. Health and Quality of Life Outcomes, 6(1), 89.CrossRefPubMedCentralPubMed
16.
go back to reference Tay, L., Chan, D., & Diener, E. (2014). The metrics of societal happiness. Social Indicators Research, 117(2), 577–600.CrossRef Tay, L., Chan, D., & Diener, E. (2014). The metrics of societal happiness. Social Indicators Research, 117(2), 577–600.CrossRef
17.
go back to reference Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European organization for research and treatment of cancer study group on quality of life: The EORTC QLQ-C30: A quality of life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–367.CrossRefPubMed Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European organization for research and treatment of cancer study group on quality of life: The EORTC QLQ-C30: A quality of life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–367.CrossRefPubMed
18.
go back to reference Sprangers, M. A. G., Cull, A., Groenvold, M., Björdal, K., Blazeby, J., & Aaronson, N. K. (1998). The European organization for research and treatment of cancer approach to developing questionnaire modules: An update and overview. The EORTC quality of life study group. Quality of Life Research, 7(4), 291–300.CrossRefPubMed Sprangers, M. A. G., Cull, A., Groenvold, M., Björdal, K., Blazeby, J., & Aaronson, N. K. (1998). The European organization for research and treatment of cancer approach to developing questionnaire modules: An update and overview. The EORTC quality of life study group. Quality of Life Research, 7(4), 291–300.CrossRefPubMed
19.
go back to reference Sprangers, M. A., Bartels, M., Veenhoven, R., Baas, F., Martin, N. G., Mosing, M., et al. (2010). Which patient will feel down, which will be happy? The need to study the genetic disposition of emotional states. Quality Life Research, 19, 1429–1437.CrossRef Sprangers, M. A., Bartels, M., Veenhoven, R., Baas, F., Martin, N. G., Mosing, M., et al. (2010). Which patient will feel down, which will be happy? The need to study the genetic disposition of emotional states. Quality Life Research, 19, 1429–1437.CrossRef
20.
go back to reference Bartels, M., Saviouk, V., de Moor, M. H. M., Willemsen, A. H. M., van Beijsterveldt, C. E. M., Hottenga, J. J., et al. (2010). Heritability and genome-wide linkage scan for subjective happiness. Twin Research and Human Genetics, 13(2), 135–142.CrossRefPubMed Bartels, M., Saviouk, V., de Moor, M. H. M., Willemsen, A. H. M., van Beijsterveldt, C. E. M., Hottenga, J. J., et al. (2010). Heritability and genome-wide linkage scan for subjective happiness. Twin Research and Human Genetics, 13(2), 135–142.CrossRefPubMed
21.
go back to reference Diener, E., Inglehart, R., & Tay, L. (2013). Theory and validity of life satisfaction scales. Social Indicators Research, 112(3), 497–527.CrossRef Diener, E., Inglehart, R., & Tay, L. (2013). Theory and validity of life satisfaction scales. Social Indicators Research, 112(3), 497–527.CrossRef
22.
go back to reference Veenhoven, R. (2009). How do we assess how happy we are? In A. K. Dutt & B. Radcliff (Eds.), Happiness, economics and politics: Towards a multi-disciplinary approach (pp. 45–69). Cheltenham: Edward Elger Publishers. Veenhoven, R. (2009). How do we assess how happy we are? In A. K. Dutt & B. Radcliff (Eds.), Happiness, economics and politics: Towards a multi-disciplinary approach (pp. 45–69). Cheltenham: Edward Elger Publishers.
23.
go back to reference Sprangers, M. A. G., Sloan, J. A., Veenhoven, R., Cleeland, C. S., Halyard, M. Y., Abertnethy, A. M., et al. (2009). The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes. Twin Research and Human Genetics, 12(3), 301–311.CrossRefPubMedCentralPubMed Sprangers, M. A. G., Sloan, J. A., Veenhoven, R., Cleeland, C. S., Halyard, M. Y., Abertnethy, A. M., et al. (2009). The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes. Twin Research and Human Genetics, 12(3), 301–311.CrossRefPubMedCentralPubMed
24.
go back to reference Sprangers, M. A. G., Sloan, J. A., Barsevick, A., Chauhan, C., Dueck, A. C., Raat, H., et al. (2010). Scientific imperatives, clinical implications, and theoretical underpinnings for the investigation of the relationship between genetic variables and patient-reported quality-of-life outcomes. Quality of Life Research, 19(10), 1395–1403.CrossRefPubMedCentralPubMed Sprangers, M. A. G., Sloan, J. A., Barsevick, A., Chauhan, C., Dueck, A. C., Raat, H., et al. (2010). Scientific imperatives, clinical implications, and theoretical underpinnings for the investigation of the relationship between genetic variables and patient-reported quality-of-life outcomes. Quality of Life Research, 19(10), 1395–1403.CrossRefPubMedCentralPubMed
25.
go back to reference Rausch, S. M., Clark, M. M., Patten, C., Liu, H., Felten, S., Li, Y., et al. (2010). Relationship between cytokine gene single nucleotide polymorphisms and symptom burden and quality of life in lung cancer survivors. Cancer, 116(17), 4103–4113.CrossRefPubMedCentralPubMed Rausch, S. M., Clark, M. M., Patten, C., Liu, H., Felten, S., Li, Y., et al. (2010). Relationship between cytokine gene single nucleotide polymorphisms and symptom burden and quality of life in lung cancer survivors. Cancer, 116(17), 4103–4113.CrossRefPubMedCentralPubMed
26.
go back to reference Schoormans, D., Radonic, T., de Witte, P., Groenink, M., Azim, D., Lutter, R., et al. (2012). Mental quality of life is related to a cytokine genetic pathway. PLoS ONE, 7(9), e45126.CrossRefPubMedCentralPubMed Schoormans, D., Radonic, T., de Witte, P., Groenink, M., Azim, D., Lutter, R., et al. (2012). Mental quality of life is related to a cytokine genetic pathway. PLoS ONE, 7(9), e45126.CrossRefPubMedCentralPubMed
27.
go back to reference Sprangers, M. A., Thong, M. S., Bartels, M., Barsevick, A., Ordoñana, J., Shi, Q., et al. (2014). Biological pathways, candidate genes, and molecular markers associated with quality-of-life domains: An update. Quality of Life Research, 23(7), 1997–2013.CrossRefPubMedCentralPubMed Sprangers, M. A., Thong, M. S., Bartels, M., Barsevick, A., Ordoñana, J., Shi, Q., et al. (2014). Biological pathways, candidate genes, and molecular markers associated with quality-of-life domains: An update. Quality of Life Research, 23(7), 1997–2013.CrossRefPubMedCentralPubMed
28.
go back to reference Sloan, J., & Zhao, X. (2006). Genetics and quality of life. Current Problems in Cancer, 30(6), 255–260.CrossRefPubMed Sloan, J., & Zhao, X. (2006). Genetics and quality of life. Current Problems in Cancer, 30(6), 255–260.CrossRefPubMed
29.
go back to reference Huber, M., Knottnerus, J. A., Green, L., Van der Horst, H., Jadad, A. R., Kromhout, D., et al. (2011). How should we define health? British Medical Journal, 343, d4163.CrossRefPubMed Huber, M., Knottnerus, J. A., Green, L., Van der Horst, H., Jadad, A. R., Kromhout, D., et al. (2011). How should we define health? British Medical Journal, 343, d4163.CrossRefPubMed
30.
go back to reference Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health- related quality of life research: A theoretical model. Social Science and Medicine, 48(11), 1507–1515.CrossRefPubMed Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health- related quality of life research: A theoretical model. Social Science and Medicine, 48(11), 1507–1515.CrossRefPubMed
31.
go back to reference Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science and Medicine, 48(11), 1531–1548.CrossRefPubMed Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science and Medicine, 48(11), 1531–1548.CrossRefPubMed
32.
go back to reference Schwartz, C. E., Bode, R., Repucci, N., Becker, J., Sprangers, M. A. G., & Fayers, P. (2006). The clinical significance of adaptation to changing health: A meta-analysis of response shift. Quality Life Research, 15, 1533–1550.CrossRef Schwartz, C. E., Bode, R., Repucci, N., Becker, J., Sprangers, M. A. G., & Fayers, P. (2006). The clinical significance of adaptation to changing health: A meta-analysis of response shift. Quality Life Research, 15, 1533–1550.CrossRef
33.
go back to reference Barclay-Goddard, R., Epstein, D. E., & Mayo, N. E. (2009). Response shift: A brief overview and proposed research priorities. Quality and Life Research, 18(3), 335–346.CrossRef Barclay-Goddard, R., Epstein, D. E., & Mayo, N. E. (2009). Response shift: A brief overview and proposed research priorities. Quality and Life Research, 18(3), 335–346.CrossRef
34.
go back to reference Oort, F. J. (2005). Using structural equation modeling to detect response shifts and true change. Quality of Life Research, 14(3), 587–598.CrossRefPubMed Oort, F. J. (2005). Using structural equation modeling to detect response shifts and true change. Quality of Life Research, 14(3), 587–598.CrossRefPubMed
35.
go back to reference Gandhi, P. K., Ried, L. D., Huang, I.-C., Kimberlin, C. L., & Kauf, T. L. (2013). Assessment of response shift using two structural equation modeling techniques. Quality of Life Research, 22(3), 461–471.CrossRefPubMedCentralPubMed Gandhi, P. K., Ried, L. D., Huang, I.-C., Kimberlin, C. L., & Kauf, T. L. (2013). Assessment of response shift using two structural equation modeling techniques. Quality of Life Research, 22(3), 461–471.CrossRefPubMedCentralPubMed
36.
go back to reference Guilleux, A., Blanchin, M., Vanier, A., Guillemin, F., Falissard, B., Schwartz, C. E., Hardouin, J.-B., & Sébille, V. (2015). RespOnse Shift ALgorithm in Item response theory (ROSALI) for response shift detection with missing data in longitudinal patient-reported outcome studies. Quality of Life Research. doi:10.1007/s11136-014-0876-4. Guilleux, A., Blanchin, M., Vanier, A., Guillemin, F., Falissard, B., Schwartz, C. E., Hardouin, J.-B., & Sébille, V. (2015). RespOnse Shift ALgorithm in Item response theory (ROSALI) for response shift detection with missing data in longitudinal patient-reported outcome studies. Quality of Life Research. doi:10.​1007/​s11136-014-0876-4.
37.
go back to reference Li, Y., & Rapkin, B. (2009). Classification and regression tree analysis to identify complex cognitive paths underlying quality of life response shifts: A study of individuals living with HIV/AIDS. Journal of Clinical Epidemiology, 62(11), 1138–1147.CrossRefPubMedCentralPubMed Li, Y., & Rapkin, B. (2009). Classification and regression tree analysis to identify complex cognitive paths underlying quality of life response shifts: A study of individuals living with HIV/AIDS. Journal of Clinical Epidemiology, 62(11), 1138–1147.CrossRefPubMedCentralPubMed
38.
go back to reference Li, Y., & Schwartz, C. E. (2011). Using classification and regression tree to examine evidence of quality of life response shift in patients with multiple sclerosis. Quality of Life Research, 20(10), 1543–1553.CrossRefPubMed Li, Y., & Schwartz, C. E. (2011). Using classification and regression tree to examine evidence of quality of life response shift in patients with multiple sclerosis. Quality of Life Research, 20(10), 1543–1553.CrossRefPubMed
39.
go back to reference Boucekine, M., Loundou, A., Baumstarck, K., Minaya-Flores, P., Pelletier, J., Ghattas, B., & Auquier, P. (2013). Using the random forest method to detect a response shift in the quality of life of multiple sclerosis patients: A cohort study. BMC Medical Research Methodology, 13, 20.CrossRefPubMedCentralPubMed Boucekine, M., Loundou, A., Baumstarck, K., Minaya-Flores, P., Pelletier, J., Ghattas, B., & Auquier, P. (2013). Using the random forest method to detect a response shift in the quality of life of multiple sclerosis patients: A cohort study. BMC Medical Research Methodology, 13, 20.CrossRefPubMedCentralPubMed
40.
go back to reference Johnston, B. C., Patrick, D. L., Busse, J. W., Schünemann, H. J., Agarwal, A., & Guyatt, G. H. (2013). Patient reported outcomes in meta-analyses-part 1: Assessing risk of bias and combining outcomes. Health and Quality of Life Outcomes, 11(1), 109.CrossRefPubMedCentralPubMed Johnston, B. C., Patrick, D. L., Busse, J. W., Schünemann, H. J., Agarwal, A., & Guyatt, G. H. (2013). Patient reported outcomes in meta-analyses-part 1: Assessing risk of bias and combining outcomes. Health and Quality of Life Outcomes, 11(1), 109.CrossRefPubMedCentralPubMed
41.
go back to reference Johnston, B. C., Patrick, D. L., Thorlund, K., Busse, J. W., da Costa, B. R., Schünemann, H. J., et al. (2013). Patient-reported outcomes in meta-analyses—Part 2: Methods for improving interpretability for decision-makers. Health and Quality of Life Outcomes, 11(1), 211.CrossRefPubMedCentralPubMed Johnston, B. C., Patrick, D. L., Thorlund, K., Busse, J. W., da Costa, B. R., Schünemann, H. J., et al. (2013). Patient-reported outcomes in meta-analyses—Part 2: Methods for improving interpretability for decision-makers. Health and Quality of Life Outcomes, 11(1), 211.CrossRefPubMedCentralPubMed
42.
go back to reference Greenhalgh, J., Abhyankar, P., McCluskey, S., Takeuchi, E., & Velikova, G. (2013). How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations? Quality of Life Research, 22(5), 939–950.CrossRefPubMed Greenhalgh, J., Abhyankar, P., McCluskey, S., Takeuchi, E., & Velikova, G. (2013). How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations? Quality of Life Research, 22(5), 939–950.CrossRefPubMed
43.
go back to reference Schwartz, C. E., King, M., & Sprangers, M. A. G. (2014). Let’s engage the patient within us: A personal perspective on patient engagement. Quality of Life Research, 23(4), 1045–1046.CrossRefPubMed Schwartz, C. E., King, M., & Sprangers, M. A. G. (2014). Let’s engage the patient within us: A personal perspective on patient engagement. Quality of Life Research, 23(4), 1045–1046.CrossRefPubMed
44.
go back to reference Committee on Quality of Health Care in America. Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. Committee on Quality of Health Care in America. Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press.
45.
go back to reference Sprangers, M. A. G., Hall, P., Morisky, D. E., Narrow, W. E., & Dapueto, J. (2013). Using patient-reported measurement to pave the path towards personalized medicine. Quality of Life Research, 22(10), 2631–2637.CrossRefPubMed Sprangers, M. A. G., Hall, P., Morisky, D. E., Narrow, W. E., & Dapueto, J. (2013). Using patient-reported measurement to pave the path towards personalized medicine. Quality of Life Research, 22(10), 2631–2637.CrossRefPubMed
Metagegevens
Titel
How recent health-related life events affected my perspective on quality-of-life research
Auteur
Mirjam A. G. Sprangers
Publicatiedatum
01-05-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0905-3

Andere artikelen Uitgave 5/2015

Quality of Life Research 5/2015 Naar de uitgave