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28-04-2016

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

Auteurs: 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

Gepubliceerd in: Quality of Life Research | Uitgave 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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Literatuur
1.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Compston, A., & Coles, A. (2008). Multiple sclerosis. The Lancet, 372(9648), 1502–1517.CrossRef Compston, A., & Coles, A. (2008). Multiple sclerosis. The Lancet, 372(9648), 1502–1517.CrossRef
5.
go back to reference 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 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.
go back to reference 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 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
8.
9.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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. 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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
17.
go back to reference Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandnavica, 67(6), 361–370.CrossRef Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandnavica, 67(6), 361–370.CrossRef
18.
go back to reference 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 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.
go back to reference 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 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
21.
go back to reference 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 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.
go back to reference Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology, 33, 1444–1452.CrossRefPubMed Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology, 33, 1444–1452.CrossRefPubMed
24.
go back to reference 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. 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.
go back to reference 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. 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill.
35.
go back to reference Pollmann, W., Busch, C., & Voltz, R. (2005). Quality of life in multiple sclerosis: Measures, relevance, problems, and perspectives. Nervenarzt, 76(2), 154–169.CrossRefPubMed 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.
go back to reference 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 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.
go back to reference World Health Organization. (2001). The international classification of functioning, disability and health: ICF. Geneva: World Health Organization. World Health Organization. (2001). The international classification of functioning, disability and health: ICF. Geneva: World Health Organization.
38.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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. 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.
go back to reference 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 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.
go back to reference 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 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.
go back to reference 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 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
Metagegevens
Titel
Individualized quality of life of severely affected multiple sclerosis patients: practicability and value in comparison with standard inventories
Auteurs
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
Publicatiedatum
28-04-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 11/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1303-9

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