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22-06-2024

A longitudinal study of within-person trajectories in quality of life in patients receiving early palliative care

Auteurs: Brian P. O’Connor, Barbara Pesut

Gepubliceerd in: Quality of Life Research | Uitgave 10/2024

Abstract

Purpose

To reveal the within-person trajectories in quality of life (QOL) in patients receiving early palliative care. Previous studies have mostly focused aggregated trajectories, based on all research participants combined, whereas this study focused on within-person trajectories in QOL and on whether the variability in QOL trajectories across patients is substantial enough to raise doubts about aggregated trajectories.

Methods

Twenty-five older persons in early palliative care completed the McGill Quality of Life Questionnaire multiple times. Reliable change analyses provided estimates of the occurrence of statistically significant within-person change.

Results

There was reliable, within-person variation in QOL scores across time, more so for physical than for psychological aspects of well-being. Changes in QOL scores occurred for most patients but the trajectories were not linear and there was no common trend in the nonlinear patterns.

Conclusions

Reliable change across time can be identified in persons receiving early palliative care. However, the trajectories are notably variable and patient-specific. The high degrees of within-person variability across time suggests the importance of repeated QOL assessments and of dynamic tailoring of clinical treatments.

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Alleen toegankelijk voor geautoriseerde gebruikers

Breitbart, W., & Chochinov, H. (Eds.). (2022). Handbook of Psychiatry in Palliative Medicine. Oxford University Press.

Kassianos, P. (Ed.). (2022). Handbook of Quality of Life in Cancer. Springer Nature.

Sawatzky, R., Porterfield, P., Lee, J., Dixon, D., Lounsbury, K., Pesut, B., Roberts, D., Tayler, C., Voth, J., & Stajduhar, K. (2016). Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative care, 15, 5. https://doi.org/10.1186/s12904-016-0076-9.CrossRefPubMedPubMedCentral

Beernaert, K., Pardon, K., Van den Block, L., Devroey, D., De Laat, M., Geboes, K., Surmont, V., Deliens, L., & Cohen, J. (2016). Palliative care needs at different phases in the illness trajectory: A survey study in patients with cancer. European Journal of cancer care, 25(4), 534–543. https://doi.org/10.1111/ecc.12522.CrossRefPubMed

RummansT. A., BostwickJ. M., Clark, M. M., & Mayo Clinic Cancer Center Quality of Life Working Group. (2000). Maintaining quality of life at the end of life. Mayo Clinic Proceedings, 75(12), 1305–1310. https://doi.org/10.4065/75.12.1305.

Stajduhar, K. I. (2011). Chronic illness, palliative care, and the problematic nature of dying. The Canadian Journal of Nursing Research, 43(3), 7–15.PubMed

Mason, B., Nanton, V., Epiphaniou, E., Murray, S. A., Donaldson, A., Shipman, C., Daveson, B. A., Harding, R., Higginson, I. J., Munday, D., Barclay, S., Dale, J., Kendall, M., Worth, A., & Boyd, K. (2016). My body’s falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: Serial interviews with patients and carers. BMJ Supportive & Palliative care, 6(1), 60–65. https://doi.org/10.1136/bmjspcare-2013-000639.CrossRef

Roscoe, L. A., & Schocken, D. D. (2010). Measuring quality of life at the end of life. In V. R. Preedy, & R. R. Watson (Eds.), Handbook of Disease burdens and Quality of Life measures. Springer. https://doi.org/10.1007/978-0-387-78665-0_157.

Cohen, S. R., Boston, P., Mount, B. M., & Porterfield, P. (2001). Changes in quality of life following admission to palliative care units. Palliative Medicine, 15(5), 363–371. https://doi.org/10.1191/026921601680419401.CrossRefPubMed

10.

Davis, M. P., & Hui, D. (2017). Quality of life in Palliative Care. Expert Review of Quality of life in cancer care, 2(6), 293–302. https://doi.org/10.1080/23809000.2017.1400911.CrossRefPubMedPubMedCentral

11.

Kumar, S. P. (2012). Reporting of quality of life: A systematic review and quantitative analysis of research publications in palliative care journals. Indian Journal of Palliative care, 18(1), 59–67. https://doi.org/10.4103/0973-1075.97475.CrossRefPubMedPubMedCentral

12.

Kavalieratos, D., Corbelli, J., Zhang, D., Dionne-Odom, J. N., Ernecoff, N. C., Hanmer, J., Hoydich, Z. P., Ikejiani, D. Z., Klein-Fedyshin, M., Zimmermann, C., Morton, S. C., Arnold, R. M., Heller, L., & Schenker, Y. (2016). Association between Palliative Care and Patient and Caregiver outcomes: A systematic review and Meta-analysis. Journal of the American Medical Association, 316(20), 2104–2114. https://doi.org/10.1001/jama.2016.16840.CrossRefPubMed

13.

Jacobson, N. S., & Truax, P. (1991). Clinical significance: A statistical approach to defining meaningful change in psychotherapy research. Journal of Consulting and Clinical Psychology, 59(1), 12–19.CrossRefPubMed

14.

Bailey, R. J., Ogles, B. M., & Lambert, M. J. (2023). Measures of clinically significant change. In H. Cooper, M. N. Coutanche, L. M. McMullen, A. T. Panter, D. Rindskopf, & K. J. Sher (Eds.), APA handbook of research methods in psychology: Data analysis and research publication (pp. 147–165). American Psychological Association.

15.

Pesut, B., Hooper, B., Jacobsen, M., Nielsen, B., Falk, M., & ‘Connor, O., B. P (2017). Nurse-led navigation to provide early palliative care in rural areas: A pilot study. BMC Palliative care, 16(1), 37. https://doi.org/10.1186/s12904-017-0211-2.CrossRefPubMedPubMedCentral

16.

Cohen, S. R., Mount, B. M., Strobel, M. G., & 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. Palliative Medicine, 9(3), 207–219. https://doi.org/10.1177/026921639500900306.CrossRefPubMed

17.

Cohen, S. R., Mount, B. M., Bruera, E., Provost, M., Rowe, J., & Tong, K. (1997). Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliative Medicine, 11(1), 3–20. https://doi.org/10.1177/026921639701100102.CrossRefPubMed

18.

Cohen, S. R., Sawatzky, R., Russell, L. B., Shahidi, J., Heyland, D. K., & Gadermann, A. M. (2017). Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-revised. Palliative Medicine, 31(2), 120–129. https://doi.org/10.1177/0269216316659603.CrossRefPubMed

19.

Cohen, S. R., & Mount, B. M. (2000). Living with cancer: ‘good’ days and ‘bad’ days—what produces them? Can the McGill quality of life questionnaire distinguish between them? Cancer, 89, 1854–1865.CrossRefPubMed

20.

Kahn, J. H., & Schneider, W. J. (2013). It’s the destination and it’s the journey: Using multilevel modeling to assess patterns of change in psychotherapy. Journal of Clinical Psychology, 69, 543–570.CrossRefPubMed

21.

Newsom, J. T., Jones, R. N., & Hofer, S. M. (Eds.). (2012). Longitudinal data analysis: A practical guide for researchers in aging, health, and social sciences. Routledge/Taylor & Francis Group.

22.

Grimm, K. J., Davoudzadeh, P., & Ram, N. (2017). Developments in the analysis of longitudinal data. Monographs of the Society for Research in Child Development, 82(2), 46–66. https://doi.org/10.1111/mono.12298.CrossRefPubMed

23.

Pinheiro, J., Bates, D., DebRoy, S., Sarkar, D., & R Core Team. (2021). nlme: Linear and Nonlinear Mixed Effects Models [Internet]. https://CRAN.R-project.org/package=nlme.

24.

R Core Team (2021). R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. URL https://www.R-project.org/.

25.

Willett, J. B. (1988). Questions and answers in the measurement of change. In E. Rothkopf (Ed.), Review of research in education (1988–89) (pp. 345–422). American Educational Research Association.

26.

Norman, G. R., Sloan, J. A., & Wyrwich, K. W. (2003). Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Medical care, 41(5), 582–592. https://doi.org/10.1097/01.MLR.0000062554.74615.4C.CrossRefPubMed

27.

Jaeschke, R., Singer, J., & Guyatt, G. H. (1989). Measurement of health status. Ascertaining the minimal clinically important difference. Controlled Clinical Trials, 10(4), 407–415. https://doi.org/10.1016/0197-2456(89)90005-6.CrossRefPubMed

28.

Cook, C. E. (2008). Clinimetrics Corner: The minimal clinically important change score (MCID): A necessary pretense. The Journal of Manual & Manipulative Therapy, 16(4), E82–E83. https://doi.org/10.1179/jmt.2008.16.4.82E.CrossRef

29.

Copay, A. G., Subach, B. R., Glassman, S. D., Polly, D. W. Jr, & Schuler, T. C. (2007). Understanding the minimum clinically important difference: A review of concepts and methods. The Spine Journal: Official Journal of the North American Spine Society, 7(5), 541–546. https://doi.org/10.1016/j.spinee.2007.01.008.CrossRefPubMed

30.

McGlothlin, A. E., & Lewis, R. J. (2014). Minimal clinically important difference: Defining what really matters to patients. Journal of the American Medical Association, 312(13), 1342–1343. https://doi.org/10.1001/jama.2014.13128.CrossRefPubMed

31.

Gaertner, J., Siemens, W., Meerpohl, J. J., Antes, G., Meffert, C., Xander, C., Stock, S., Mueller, D., Schwarzer, G., & Becker, G. (2017). Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: Systematic review and meta-analysis. BMJ (Clinical Research ed), 357, j2925. https://doi.org/10.1136/bmj.j2925.CrossRefPubMed

32.

Hernán, M. A., Hsu, J., & Healy, B. (2019). A second chance to get causal inference right: A classification of Data Science Tasks. CHANCE, 32(1), 42–49. https://doi.org/10.1080/09332480.2019.1579578.CrossRef

Titel: A longitudinal study of within-person trajectories in quality of life in patients receiving early palliative care
Auteurs: Brian P. O’Connor
Barbara Pesut
Publicatiedatum: 22-06-2024
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 10/2024
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-024-03722-z

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