Hostname: page-component-78c5997874-8bhkd Total loading time: 0 Render date: 2024-11-19T10:48:53.199Z Has data issue: false hasContentIssue false
  • English
  • Français

Self-rating makes the difference: Identifying palliative care needs of patients feeling severely affected by multiple sclerosis

Published online by Cambridge University Press:  22 May 2014

Julia Strupp Open the ORCID record for Julia Strupp [Opens in a new window] ,
Heidrun Golla ,
Maren Galushko ,
Raphael Buecken ,
Nicole Ernstmann ,
Moritz Hahn ,
Holger Pfaff  and
Raymond Voltz
Julia Strupp*
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Heidrun Golla
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Maren Galushko
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Raphael Buecken
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany
Nicole Ernstmann
Affiliation:
Center for Health Services Research, University of Cologne, Cologne, Germany
Moritz Hahn
Affiliation:
Institute of Medical Statistics, Informatics and Epidemiology, University Hospital of Cologne, Cologne, Germany
Holger Pfaff
Affiliation:
Center for Health Services Research, University of Cologne, Cologne, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany Center for Integrated Oncology Cologne/Bonn, Cologne, Germany Clinical Trials Center, Cologne, Germany
*
Address correspondence and reprint requests to: Julia Strupp, University Hospital Cologne, Kerpener Strasse 62, D-50937 Köln, Germany. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs.

Method:

A self-report questionnaire with 25 needs categories including 7 categories pertaining to care was applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (≥7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann–Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients.

Results:

Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006).

Significance of results:

A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.

Keywords

Multiple sclerosisNeeds assessmentSevere affectednessPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 733 - 740
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

Both authors contributed equally to this work.

References

REFERENCES

Bronnum-Hansen, H., Stenager, E., Nylev-Stenager, E., et al. (2005). Suicide among Danes with multiple sclerosis. Journal of Neurology, Neurosurgery, and Psychiatry, 76(10), 1457–1459.Google Scholar
Buecken, R., Galushko, M., Golla, H., et al. (2012). Patients feeling severely affected by multiple sclerosis: How do patients want to communicate about end-of-life issues? Patient Education and Counseling, 88(2), 318–324.Google Scholar
Campion, K. (1996). Multiple sclerosis: Meeting multiple needs. Nursing Times, 92(24), 28–30.Google Scholar
Edmonds, P., Vivat, B., Burman, R., et al. (2007 a). “Fighting for everything”: Service experiences of people severely affected by multiple sclerosis. Multiple Sclerosis, 13(5), 660–667.Google Scholar
Edmonds, P., Vivat, B., Burman, R., et al. (2007 b). Loss and change: Experiences of people severely affected by multiple sclerosis. Palliative Medicine, 21(2), 101–107.Google Scholar
Edmonds, P., Hart, S., Wei, G., et al. (2010). Palliative care for people severely affected by multiple sclerosis: Evaluation of a novel palliative care service. Multiple Sclerosis, 16(5), 627–636.Google Scholar
Feinstein, A. (1997). Multiple sclerosis, depression, and suicide. BMJ, 315(7110), 691–692.Google Scholar
Feinstein, A. (2002). An examination of suicidal intent in patients with multiple sclerosis. Neurology, 59(5), 674–678.Google Scholar
Figved, N., Myhr, K.M., Larsen, J.P., et al. (2007). Caregiver burden in multiple sclerosis: The impact of neuropsychiatric symptoms. Journal of Neurology, Neurosurgery, and Psychiatry, 78(10), 1097–1102.Google Scholar
Flachenecker, P., Stuke, K., Elias, W., et al. (2008). Multiple sclerosis registry in Germany: Results of the extension phase 2005–2006. Deutsches Ärzteblatt International, 105(7), 113–119.Google Scholar
Forbes, A., While, A., Dyson, L., et al. (2003). Impact of clinical nurse specialists in multiple sclerosis: Synthesis of the evidence. Journal of Advanced Nursing, 42(5), 442–462.Google Scholar
Forbes, A., While, A., Mathes, L., et al. (2006). Health problems and health-related quality of life in people with multiple sclerosis. Clinical Rehabilitation, 20(1), 67–78.Google Scholar
Forbes, A., While, A. & Taylor, M. (2007). What people with multiple sclerosis perceive to be important to meeting their needs. Journal of Advanced Nursing, 58(1), 11–22.Google Scholar
Freeman, J.A. & Thompson, A.J. (2000). Community services in multiple sclerosis: Still a matter of chance. Journal of Neurology, Neurosurgery, and Psychiatry, 69(6), 728–732.Google Scholar
Galushko, M., Golla, H., Pfaff, H., et al. (2008). Multiple sclerosis and palliative care: Different perspectives from patients and health professionals on unmet needs in severely affected patients in Germany. Palliative Medicine, 22(4), 435–436.Google Scholar
Galushko, M., Golla, H., Hartwig, A., et al. (2009 a). Perceived needs of German patients feeling severely affected by multiple sclerosis: Results of a survey. European Journal of Palliative Care, abstracts page 96.Google Scholar
Galushko, M., Golla, H., Ostgathe, C., et al. (2009 b). Attitudes toward death of patients feeling severely affected by multiple sclerosis in Germany. European Journal of Palliative Care, abstracts page 94.Google Scholar
Galushko, M., Golla, H., Strupp, J., et al. (2014). Unmet needs of patients severely affected by multiple sclerosis in Germany: A qualitative study. Journal of Palliative Medicine. In press. Available at http://www.biomedcentral.com/1472-684X/13/11.Google Scholar
Gold, S.M., Heesen, C., Schulz, H., et al. (2001). Disease-specific quality-of-life instruments in multiple sclerosis: Validation of the Hamburg Quality of Life Questionnaire in multiple sclerosis (HAQUAMS). Multiple Sclerosis, 7(2), 119–130.Google Scholar
Golla, H., Galushko, M., Pfaff, H., et al. (2012). Unmet needs of severely affected multiple sclerosis patients: The health professionals' view. Palliative Medicine, 26(2), 139–151.Google Scholar
Higginson, I.J. & Booth, S. (2011). The randomized fast-track trial in palliative care: Role, utility and ethics in the evaluation of interventions in palliative care? Palliative Medicine, 25(8), 741–747.Google Scholar
Higginson, I.J., Hart, S., Silber, E., et al. (2006). Symptom prevalence and severity in people severely affected by multiple sclerosis. Journal of Palliative Care, 22(3), 158–165.Google Scholar
Higginson, I.J., McCrone, P., Hart, S.R., et al. (2009). Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. Journal of Pain and Symptom Management, 38(6), 816–826.Google Scholar
Higginson, I.J., Costantini, M., Silber, E., et al. (2011). Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: A randomised fast-track trial to test timing of referral and how long the effect is maintained. Postgraduate Medical Journal, 87(1033), 769–775.Google Scholar
Koopman, W. (2003). Needs assessment of persons with multiple sclerosis and significant others: Using the literature review and focus groups for preliminary survey questionnaire development. Axone, 24(4), 10–15.Google Scholar
Kristjanson, L.J., Aoun, S.M. & Oldham, L. (2006). Palliative care and support for people with neurodegenerative conditions and their carers. International Journal of Palliative Nursing, 12(8), 368–377.Google Scholar
Kuempfel, T., Hoffmann, L.A., Pollmann, W., et al. (2007). Palliative care in patients with severe multiple sclerosis: Two case reports and a survey among German MS neurologists. Palliative Medicine, 21(2), 109–114.Google Scholar
Landoni, M.G., Giordano, M.T. & Guidetti, G.P. (2000). Group psychotherapy experiences for people with multiple sclerosis and psychological support for families. Journal of Neurovirology, 6 (Suppl. 2), S168–S171.Google Scholar
Leray, E., Yaouanq, J., Le Page, E., et al. (2010). Evidence for a two-stage disability progression in multiple sclerosis. Brain, 133(Pt. 7), 1900–1913.Google Scholar
Mercer, S.W., Maxwell, M., Heaney, D., et al. (2004). The consultation and relational empathy (CARE) measure: Development and preliminary validation and reliability of an empathy-based consultation process measure. Family Practice, 21(6), 699–705.Google Scholar
Neumann, M., Wirtz, M., Bollschweiler, E., et al. (2008). Psychometric evaluation of the German version of the “Consultation and Relational Empathy” (CARE) measure at the example of cancer patients. Psychotherapie, Psychosomatik, Medizinische Psychologie, 58(1), 5–15.Google Scholar
Ostgathe, C., Alt-Epping, B., Golla, H., et al. (2011). Non-cancer patients in specialized palliative care in Germany: What are the problems? Palliative Medicine, 25(2), 148–152.Google Scholar
Peterman, A.H., Fitchett, G., Brady, M.J., et al. (2002). Measuring spiritual well-being in people with cancer: The functional assessment of chronic illness therapy. Spiritual Well-being Scale (FACIT–Sp). Annals of Behavioral Medicine, 24(1), 49–58.Google Scholar
Ragonese, P., Aridon, P., Salemi, G., et al. (2008). Mortality in multiple sclerosis: A review. European Journal of Neurology, 15(2), 123–127.Google Scholar
Somerset, M., Campbell, R., Sharp, D.J., et al. (2001). What do people with MS want and expect from health-care services? Health Expectations, 4(1), 29–37.Google Scholar
Strupp, J., Hartwig, A.J., Golla, H., et al. (2012). Feeling severely affected by multiple sclerosis: What does this mean? Palliative Medicine, 26(8), 1001–1010.Google Scholar
Sumelahti, M.L., Hakama, M., Elovaara, I., et al. (2010). Causes of death among patients with multiple sclerosis. Multiple Sclerosis, 16(12), 1437–1442.Google Scholar
Voltz, R. (2010). Palliative care for multiple sclerosis: A counter-intuitive approach? Multiple Sclerosis, 16(5), 515–517.Google Scholar
Wollin, J.A., Yates, P.M. & Kristjanson, L.J. (2006). Supportive and palliative care needs identified by multiple sclerosis patients and their families. International Journal of Palliative Nursing, 12(1), 20–26.Google Scholar