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Quality of Life Research
Erschienen in: Quality of Life Research 11/2016

28.04.2016

Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories

verfasst von: A. M. Giovannetti, E. Pietrolongo, A. Giordano, V. Cimino, A. Campanella, G. Morone, A. Fusco, A. Lugaresi, P. Confalonieri, F. Patti, M. G. Grasso, M. Ponzio, S. Veronese, A. Solari

Erschienen in: Quality of Life Research | Ausgabe 11/2016

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Abstract

Purpose

Individualized quality of life (QoL) measures differ from traditional inventories in that QoL domains/weights are not predetermined, but identified by the individual. We assessed practicability of the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW) interview in severely affected multiple sclerosis (MS) patients; the key QoL dimensions identified; and the correlation of the SEIQoL-DW index score with standard patient-reported outcome measures (PROMs).

Methods

Participants were people with severe MS who performed the baseline visit of the PeNSAMI trial (ISRCTN73082124). The SEIQoL-DW was administered at the patient’s home by a trained examiner. Patients then received the following PROMs: the Core-Palliative care Outcome Scale (Core-POS), the Palliative care Outcome Scale-Symptoms-MS (POS-S-MS), the European Quality of Life Five Dimensions-3L (EQ-5D-3L), and the Hospital Anxiety and Depression Scale (HADS).

Results

Of 59 enrolled patients, 11 (19 %) did not receive the SEIQoL-DW (and the other PROMs) because of severe cognitive compromise or inability to communicate. SEIQoL-DW administration was completed and deemed valid in all 48 cases (mean age 60 years, 58 % women, median Expanded Disability Status Scale score 8.5). Mean SEIQoL-DW index score was 59.1 (SD 25.5). The most commonly nominated SEIQoL-DW areas were family (94 % of the patients), relationships, and leisure activities (both 65 %). Core-POS and POS-S-MS contained 70 % of the SEIQoL-DW-nominated areas. Nevertheless, correlations between SEIQoL-DW index, Core-POS, and POS-S-MS (and the other PROMs) were negligible.

Conclusions

Individualized QoL can be assessed in severely affected MS patients, providing information that is not tracked by the standard inventories Core-POS, POS-S-MS, EQ-5D-3L, and HADS.
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Literatur
1.
Conway, P. H., Mostashari, F., & Clancy, C. (2013). The future of quality measurement for improvement and accountability. The Journal of American Medical Association, 309(21), 2215–2216.CrossRef
2.
Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: a structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568.CrossRefPubMed
3.
Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of life assessments and patient-physician communication: A randomized controlled trial. The Journal of American Medical Association, 288(23), 3027–3034.CrossRef
4.
Compston, A., & Coles, A. (2008). Multiple sclerosis. The Lancet, 372(9648), 1502–1517.CrossRef
5.
Giordano, A., Ferrari, G., Radice, D., Randi, G., Bisanti, L., Solari, A., & on behalf of the POSMOS study. (2013). Self-assessed health status changes in a community cohort of people with multiple sclerosis: 11 years of follow-up. European Journal of Neurology, 20(4), 681–688.CrossRefPubMed
6.
Gruenewald, D. A., Higginson, I. J., Vivat, B., Edmonds, P., & Burman, R. E. (2004). Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review. Multiple Sclerosis, 10(6), 690–704.CrossRefPubMed
7.
8.
Solari, A., Giordano, A., Grasso, M. G., Confalonieri, P., Patti, F., Lugaresi, A., et al. (2015). Home-based palliative approach for people with severe multiple sclerosis and their carers: Study protocol for a randomized controlled trial. Trials, 16, 184. doi:10.​1186/​s13063-015-0695-0.CrossRefPubMedPubMedCentral
9.
Hickey, A. M., Bury, G., O’Boyle, C. A., Bradley, F., O’Kelly, F. D., & Shannon, W. (1996). A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. British Medical Journal, 313(7048), 29–33.CrossRefPubMedPubMedCentral
10.
O’Boyle, C. A., McGee, H., Hickey, A., O’Malley, K., & Joyce, C. R. (1992). Individual quality of life in patients undergoing hip replacement. The Lancet, 339(8801), 1088–1091.CrossRef
11.
Veronese, S., Gallo, G., Valle, A., Cugno, C., Chiò, A., & Calvo, A. (2015). Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Supportive and Palliative Care, pii: bmjspcare-2014-000788. doi: 10.​1136/​bmjspcare-2014-000788.
12.
Murrell, R. C., Kenealy, P. M., Beaumont, J. G., & Lintern, T. C. (1999). Assessing quality of life in persons with severe neurological disability associated with multiple sclerosis: The psychometric evaluation of two quality of life measures. British Journal of Health Psychology, 4(4), 349–362.CrossRef
13.
Lintern, T. C., Beaumont, J. G., Kenealy, P. M., & Murrell, R. C. (2001). Quality of Life (QoL) in severely disabled multiple sclerosis patients: comparison of three QoL measures using multidimensional scaling. Quality of Life Research, 10(4), 371–378.CrossRefPubMed
14.
Sleeman, K. E., & Higginson, I. J. (2013). A psychometric validation of two brief measures to assess palliative need in patients severely affected by multiple sclerosis. Journal of Pain and Symptom Management, 46(3), 406–412.CrossRefPubMed
15.
Hearn, J., & Higginson, I. J. (1999). Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative care core audit project advisory group. Quality in Health Care, 8(4), 219–227.CrossRefPubMedPubMedCentral
16.
17.
Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandnavica, 67(6), 361–370.CrossRef
18.
Costantini, M., Musso, M., Viterbori, P., Bonci, F., Del Mastro, L., Garrone, O., et al. (1999). Detecting psychological distress in cancer patients: Validity of the Italian version of the Hospital Anxiety and Depression Scale. Supportive Care in Cancer, 7(3), 121–127.CrossRefPubMed
19.
Keith, R. A., Granger, C. V., Hamilton, B. B., & Sherwin, F. S. (1987). The functional independence measure: A new tool for rehabilitation. Advances in Clinical Rehabilitation, 1, 6–18.PubMed
20.
21.
Polman, C. H., Reingold, S. C., Banwell, B., Clanet, M., Cohen, J. A., et al. (2011). Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Annals of Neurology, 69(2), 292–302.CrossRefPubMedPubMedCentral
22.
Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology, 33, 1444–1452.CrossRefPubMed
23.
24.
O’Boyle, C. A., McGee, H. M., Hickey, A., Joyce, C. R. B., Browne, J., et al. (1993). The schedule for the evaluation of individual quality of life (SEIQoL). administration manual. Dublin: Royal College of Surgeons in Ireland.
25.
Chiò, A., Gauthier, A., Montuschi, A., Calvo, A., Di, Vito, N., Ghiglione, P., et al. (2004). A cross sectional study on determinants of quality of life in ALS. Journal of Neurology Neurosurgery and Psychiatry, 75(11), 1597–1601.
26.
Lee, M. A., Walker, R. W., Hildreth, A. J., & Prentice, W. M. (2006). Individualized assessment of quality of life in idiopathic Parkinson’s disease. Movement Disorders, 21(11), 1929–1934.CrossRefPubMed
27.
LeVasseur, S. A., Green, S., & Talman, P. (2005). The SEIQoL-DW is a valid method for measuring individual quality of life in stroke survivors attending a secondary prevention clinic. Quality of Life Research, 14(3), 779–788.CrossRefPubMed
28.
Patel, K. K., Veenstra, D. L., & Patrick, D. L. (2003). A review of selected patient-generated outcome measures and their application in clinical trials. Value in Health, 6(5), 595–603.CrossRefPubMed
29.
Ring, L., Lindblad, A. K., Bendtsen, P., Viklund, E., Jansson, R., & Glimelius, B. (2006). Feasibility and validity of a computer administered version of SEIQoL-DW. Quality of Life Research, 15(7), 1173–1177.CrossRefPubMed
30.
Smith, H. J., Taylor, R., & Mitchell, A. (2000). A comparison of four quality of life instruments in cardiac patients: SF-36, QLI, QLMI, and SEIQoL. Heart, 84, 390–394.CrossRefPubMedPubMedCentral
31.
Wettergren, L., Kettis-Lindblad, A., Sprangers, M., & Ring, L. (2009). The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW. Quality of Life Research, 18(6), 737–746.CrossRefPubMed
32.
Farquhar, M., Ewing, G., & Higginson, I. J. (2010). The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome. Quality of Life Research, 19(5), 619–629.CrossRefPubMed
33.
Tramonti, F., Gerini, A., & Stampacchia, G. (2014). Individualised and health-related quality of life of persons with spinal cord injury. Spinal Cord, 52, 231–235.CrossRefPubMed
34.
Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill.
35.
Pollmann, W., Busch, C., & Voltz, R. (2005). Quality of life in multiple sclerosis: Measures, relevance, problems, and perspectives. Nervenarzt, 76(2), 154–169.CrossRefPubMed
36.
Neudert, C., Wasner, M., & Borasio, G. D. (2004). Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine, 7(4), 551–557.CrossRefPubMed
37.
World Health Organization. (2001). The international classification of functioning, disability and health: ICF. Geneva: World Health Organization.
38.
Podsakoff, P. M., MacKenzie, S. B., Lee, J. Y., & Podsakoff, N. P. (2003). Common method biases in behavioral research: a critical review of the literature and recommended remedies. Journal of Applied Psychology, 88(5), 879–903.CrossRefPubMed
39.
Levack, P., Grahama, J., & Kidd, J. (2004). Listen to the patient: quality of life of patients with recently diagnosed malignant cord compression in relation to their disability. Palliative Medicine, 18(7), 594–601.CrossRefPubMed
40.
Tramonti, F., Bongioanni, P., Di Bernardo, C., Davitti, S., & Rossi, B. (2012). Quality of life of patients with amyotrophic lateral sclerosis. Psychology Health and Medicine, 17(5), 621–628.CrossRef
41.
Strupp, J., Voltz, R., & Golla, H. (2016). Integrating a palliative care approach into the management of patients with severe multiple sclerosis. Multiple Sclerosis, 22(1), 13–18.
42.
Oliver, D. J., Borasio, G. D., Caraceni, A., de Visser, M., Grisold, W., Lorenzl, S., et al. (2016). A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. European Journal of Neurology, 23(1), 30–38.CrossRefPubMed
43.
Becker, G., Merk, C. S., Meffert, C., & Momm, F. (2014). Measuring individual quality of life in patients receiving radiation therapy: the SEIQoL-Questionnaire. Quality of Life Research, 23(7), 2025–2030.CrossRefPubMed
44.
Sundberg, K., Lampic, C., Bjork, O., Arvidson, J., & Wettergren, L. (2009). Positive and negative consequences of childhood cancer influencing the lives of young adults. European Journal of Oncology Nursing, 13(3), 164–170.CrossRefPubMed
Metadaten
Titel
Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories
verfasst von
A. M. Giovannetti
E. Pietrolongo
A. Giordano
V. Cimino
A. Campanella
G. Morone
A. Fusco
A. Lugaresi
P. Confalonieri
F. Patti
M. G. Grasso
M. Ponzio
S. Veronese
A. Solari
Publikationsdatum
28.04.2016
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 11/2016
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1303-9

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