Skip to main content
SpringerLink
Log in

Validation of a new quality of life scale related to multiple sclerosis and relapses

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

Multiple sclerosis (MS) has a significant impact on all aspects of patient quality of life (QoL). Furthermore, the fear of relapses and the feelings of patients during relapses must be taken into account in care. The objective of this work was to validate the PERSEPP scale (“PERception de la Sclérose En Plaques et de ses Poussées”), a new QoL evaluation scale for relapsing–remitting forms of MS.

Methods

Relapsing–remitting patients were included in a multicenter study. Various validation criteria of this scale were analyzed: acceptability, construct validity (internal and external validity), and reliability (internal consistency and reproducibility test–retest). Responsiveness will be studied in order to complete the validation process.

Results

The responses of 305 MS patients were analyzed. The process of reducing the items led us to retain 66 items of a total of 112 items. The 66-item PERSEPP scale (final version) was well accepted. Five dimensions (33 items) make up the scale: social support (α = 0.81), relationship difficulties (α = 0.71), fatigue (α = 0.74), state of mind and associated sleep disorders (α = 0.78), and time perspective (α = 0.75). Three additional modules (33 items) explore coping (α = 0.60), symptoms (α = 0.89), and treatment (α = 0.92). Test–retest reliability, measured by the intraclass correlation coefficient (ICC), was acceptable (0.72 < ICC < 0.92).

Conclusions

The PERSEPP scale has been validated and could be used in clinical trials and in daily practice. Additional studies will then complete the validation process.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Siepman, T. A., Janssens, A. C., de Koning, I., Polman, C. H., Boringa, J. B., & Hintzen, R. Q. (2008). The role of disability and depression in cognitive functioning within 2 years after multiple sclerosis diagnosis. Journal of Neurology, 255(6), 910–916.

    Article  PubMed  CAS  Google Scholar 

  2. Penner, I. K., Bechtel, N., Raselli, C., Stöcklin, M., Opwis, K., Kappos, L., et al. (2007). Fatigue in multiple sclerosis: Relation to depression, physical impairment, personality and action control. Multiple Sclerosis, 13(9), 1161–1167.

    Article  PubMed  Google Scholar 

  3. Solari, A. (2005). Role of health-related quality of life measures in the routine care of people with multiple sclerosis. Health and Quality of Life Outcomes, 3, 16.

    Article  PubMed  Google Scholar 

  4. Clavelou, P., Auclair, C., Taithe, F., & Gerbaud, L. (2009). Quality of life in multiple sclerosis: Theoretical and practical aspects. Revue Neurologique, 165(2), F115–F124.

    PubMed  Google Scholar 

  5. Riazi, A., Porter, B., Chataway, J., Thompson, A. J., & Hobart, J. C. (2011). A tool to measure the attributes of receiving IV therapy in a home versus hospital setting: The Multiple Sclerosis Relapse Management Scale (MSRMS). Health and Quality of Life Outcomes, 9, 80.

    Article  PubMed  Google Scholar 

  6. Vernay, D., Gerbaud, L., Biolay, S., Coste, J., Debourse, J., Aufauvre, D., et al. (2000). Quality of life and multiple sclerosis: Validation of the French version of the self-questionnaire (SEP-59). Revue Neurologique, 156(3), 247–263.

    PubMed  CAS  Google Scholar 

  7. Baumstarck-Barrau, K., Pelletier, J., Simeoni, M.-C., Auquier, P., & the MusiQol Study Group. (2011). French validation of the Multiple Sclerosis International Quality of Life Questionnaire. Revista de Neurologia, 167(6–7), 511–521.

    Article  CAS  Google Scholar 

  8. McKenna, S. P., Doward, L. C., Twiss, J., Hagell, P., Oprandi, N. C., Fisk, J., et al. (2010). International development of the Patient-Reported Outcome Indices for Multiple Sclerosis (PRIMUS). Value Health, 13(8), 946–951.

    Article  PubMed  Google Scholar 

  9. Hirst, C., Ingram, G., Pearson, O., Pickersgill, T., Scolding, N., & Robertson, N. (2008). Contribution of relapses to disability in multiple sclerosis. Journal of Neurology, 255(2), 280–287.

    Article  PubMed  Google Scholar 

  10. Ozakbas, S., Cagiran, I., Ormeci, B., & Idiman, E. (2004). Correlations between multiple sclerosis functional composite, expanded disability status scale and health-related quality of life during and after treatment of relapses in patients with multiple sclerosis. Journal of the Neurological Sciences, 218(1–2), 3–7.

    Article  PubMed  Google Scholar 

  11. Halper, J. (2007). The psychosocial effect of multiple sclerosis: The impact of relapses. Journal of the Neurological Sciences, 256(1), S34–S38.

    Article  PubMed  Google Scholar 

  12. Kalb, R. (2007). The emotional and psychological impact of multiple sclerosis relapses. Journal of the Neurological Sciences, 256(1), S29–S33.

    Article  PubMed  Google Scholar 

  13. Baroin, A., Chopard, G., Mokadym, H., Lavier, A., Berger, E., Rumbach, L., et al. (2010). Establishing a quality of life scale related to relapses in multiple sclerosis. 62nd annual meeting of American Academy of Neurology, Toronto. Neurology, 74(2), A160.

    Google Scholar 

  14. Baroin, A., Mokadym, H., Chopard, G., Lavier, A., Berger, E., Rumbach, L., et al. (2012). Establishing an evaluation scale for the perception of quality of life related to relapsing-remitting forms of multiple sclerosis and feasibility study. International Journal of Neuroscience, 122(1), 9–16.

    Article  PubMed  CAS  Google Scholar 

  15. Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology, 33(11), 1444–1452.

    Article  PubMed  CAS  Google Scholar 

  16. Gandek, B., Ware, J. E., Aaronson, N. K., Apolone, G., Bjorner, J. B., Brazier, J. E., et al. (1998). Cross-validation of item selection and scoring for the SF-12 health survey in Nine Countries: Results from the IQOLA project. Journal of Clinical Epidemiology, 51(11), 1171–1178.

    Article  PubMed  CAS  Google Scholar 

  17. Radat, F., Lafittau, M., Ouallet, J. C., Brochet, B., & Jouvent, R. (2007). Validation of EHD self questionnaire in multiple sclerosis. Encephale, 33(1), 49–57.

    Article  PubMed  CAS  Google Scholar 

  18. Simeoni, M.-C., Auquier, P., Fernandez, O., Flachenecker, P., Stecchi, S., Constantinescu, C. S., et al. (2008). Validation of the Multiple Sclerosis International Quality of Life questionnaire. Multiple Sclerosis, 14(2), 219–230.

    Article  PubMed  Google Scholar 

  19. Falissard, B. (2001). Mesurer la subjectivité en santé. Perspective méthodologique et statistique (p. 211). Paris: Masson.

    Google Scholar 

  20. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory. New York: McGraw-Hill.

    Google Scholar 

  21. Sébille, V., Hardouin, J.-B., Le Néel, T., Kubis, G., Boyer, F., Guillemin, F., et al. (2010). Methodological issues regarding power of classical test theory (CTT) and item response theory (IRT)-based approaches for the comparison of patient-reported outcomes in two groups of patients—a simulation study. BMC Medical Research Methodology, 10, 24.

    Article  PubMed  Google Scholar 

  22. Prieto, L., Alonso, J., & Lamarca, R. (2003). Classical test theory versus Rasch analysis for quality of life questionnaire reduction. Health and Quality of Life Outcomes, 1, 27.

    Article  PubMed  Google Scholar 

  23. Penta, M., Arnould, C., & Decruynaere, C. (2005). Développer et interpréter une échelle de mesure. Applications du modèle de Rasch (p. 186). Sprimont: Mardaga.

  24. Ramp, M., Khan, F., Misajon, R. A., & Pallant, J. F. (2009). Rasch analysis of the Multiple Sclerosis Impact Scale (MSIS-29). Health and Quality of Life Outcomes, 7, 58.

    Article  PubMed  Google Scholar 

  25. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297–334.

    Article  Google Scholar 

  26. Andrich, D., Sheridan, B. E., & Luo G. (2010). RUMM2030 (Rasch Unidimensional Measurement Model version 5.1) [Computer software]. Perth, Western Australia: RUMM Laboratory.

  27. Rummel, R. J. (1970). Applied factor analysis. Evanston, IL: Northwestern University Press.

    Google Scholar 

  28. Campbell, D. T., & Fiske, D. W. (1959). Convergent and discriminant validation by the multitrait-multimethod matrix. Psychological Bulletin, 56(2), 81–105.

    Article  PubMed  CAS  Google Scholar 

  29. Shrout, P. E., & Fleiss, J. L. (1979). Intraclass correlations: Uses in assessing rater reliability. Psychological Bulletin, 86(2), 420–428.

    Article  PubMed  CAS  Google Scholar 

  30. Béthoux, F. (2006). Fatigue and multiple sclerosis. Annales de Réadaptation et de Médecine Physique, 49(6), 265–271.

    Article  PubMed  Google Scholar 

  31. Préau, M., Apostolidis, T., François, C., Raffi, F., & Spire, B. (2007). Time perspective and quality of life among HIV-infected patients in the context of HAART. AIDS Care, 19(4), 449–458.

    Article  PubMed  Google Scholar 

  32. Zimbardo, P. G., & Boyd, J. N. (1999). Putting time in perspective: A valid, reliable individual-differences metric. Journal of Personality and Social Psychology, 77, 1271–1288.

    Article  Google Scholar 

  33. Montel, S. R., & Bungener, C. (2007). Coping and quality of life in one hundred and thirty five subjects with multiple sclerosis. Multiple Sclerosis, 13(3), 393–401.

    Article  PubMed  CAS  Google Scholar 

  34. Moreau, T., Schmidt, N., Joyeux, O., Bungener, C., & Souvignet, V. (2009). Coping strategy and anxiety evolution in multiple sclerosis patients initiating interferon-beta treatment. European Neurology, 62(2), 79–85.

    Article  PubMed  CAS  Google Scholar 

  35. Doward, L. C., McKenna, S. P., Meads, D. M., Twiss, J., & Eckert, B. J. (2009). The development of patient-reported outcome indices for multiple sclerosis (PRIMUS). Multiple Sclerosis, 15(9), 1092–1102.

    Article  PubMed  CAS  Google Scholar 

  36. Twiss, J., Doward, L. C., McKenna, S. P., & Eckert, B. (2010). Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS). Health and Quality of Life Outcomes, 8, 117.

    Article  PubMed  Google Scholar 

  37. Buljevac, D., Hop, W. C. J., Reedeker, W., Janssens, A. C. J. W., van der Meché, F. G. A., van Doorn, P. A., et al. (2003). Self reported stressful life events and exacerbations in multiple sclerosis: Prospective study. BMJ, 327(7416), 646.

    Article  PubMed  CAS  Google Scholar 

Download references

Acknowledgments

We would like to thank the Ligue Française contre la Sclérose En Plaques (LFSEP) and the AGIRSEP group, as well as Franck Leroux and Frances Sheppard (Clinical Investigation Center: Inserm CIT 808, Besançon) for their participation in this project. Co-investigators: Marc Debouverie, Sophie Pittion-Vouyovitch (Nancy), Thibault Moreau (Dijon), Jérôme de Sèze, Marie-Céline Fleury (Strasbourg), Pierre Clavelou, Dominique Aufauvre (Clermont-Ferrand), François Ziegler (Belfort), Christine Clerc (Montbéliard), Constantino Gomes (Lons-le-Saunier), Annabelle Jary (Vesoul), Olivier Heinzlef (Poissy). Private practice neurologists: Jean Galmiche (Besançon), Claudine Portha (Besançon), Didier Chavot (Besançon), Claire Sevrin (Besançon), Philippe Sevrin (Besançon), Valérie Martin-Clair (Besançon), Véronique Seyeux (Pontarlier), Pascale Labouret (Belfort), Christophe Zaenker (Colmar). The study was funded by the Ligue française contre la sclérose en plaques (LFSEP) and the Agirsep group.

Conflict of interest

The authors declare that they have no conflicts of interest.

Author information

Authors and Affiliations

  1. Department of Neurology, Besançon University Hospital, Bvd Fleming, 25030, Besançon Cedex, France

    Antoine Baroin, Gilles Chopard, Annick Lavier, Ėric Berger & Lucien Rumbach

  2. Laboratory of Neurosciences, EA 481, University of Franche-Comté, Besançon, France

    Antoine Baroin, Gilles Chopard, Hassna Mokadym & Nathalie Rude

  3. Laboratory of Imagery and Cognitive Neurosciences, UMR 7237, University of Strasbourg, Strasbourg, France

    Lucien Rumbach

  4. Clinical Investigation Center in Technological Innovation (Inserm CIC-IT 808), Besançon University Hospital, Besançon, France

    Gaye Siliman, Clément Michoudet, Aurore Vivot, Chrystelle Vidal, Annick Lavier & Lucien Rumbach

Authors
  1. Antoine Baroin
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Gilles Chopard
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Gaye Siliman
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Clément Michoudet
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Aurore Vivot
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Chrystelle Vidal
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Hassna Mokadym
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Annick Lavier
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Ėric Berger
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Lucien Rumbach
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Nathalie Rude
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Antoine Baroin.

Appendix

Appendix

Items of PERSEPP scale and three additional modules obtained by back translation.

PERSEPP scale (33 items)

No items

Title of items

Dimensions

In the last 4 weeks, due to my multiple sclerosis

1

I have felt supported by my close relatives

Social support

2

My close relatives have understood my tiredness

Social support

3

I have been well received by health care providers

Social support

4

I have trusted health care providers

Social support

In the last 4 weeks, due to my multiple sclerosis

5

Health care providers have listened to my requests, complaints, and difficulties

Social support

6

I am embarrassed by people looking at me

Relationship difficulties (work, family, and partner/spouse)

7

My relationship suffers because of my multiple sclerosis

Relationship difficulties (work, family, and partner/spouse)

8

My sex life has been disturbed

Relationship difficulties (work, family, and partner/spouse)

In the last 4 weeks, due to my multiple sclerosis

9

I avoid talking about the state of my health to my relatives (family, friends)

Relationship difficulties (work, family, and partner/spouse)

10

I have felt sad or disheartened

State of mind and sleep disorders

11

I need psychological support

State of mind and sleep disorders

12

My tiredness has repercussions for my social or working life

Fatigue

13

My personal or professional plans have changed

Time perspective

14

I have dreaded another relapse occurring

Time perspective

15

I have trouble falling asleep because I think about multiple sclerosis

Time perspective

16

Thinking about multiple sclerosis wakes me up at night

Time perspective

17

I am afraid of falling when I get up in the night

Time perspective

18

I have plans for the future (job, relationship, children, travel…)

Time perspective

During my multiple sclerosis relapses

19

I see fewer people than before (friends, family, relatives, etc.)

Relationship difficulties (work, family, and partner/spouse)

20

I feel dependent on others

Relationship difficulties (work, family, and partner/spouse)

During my multiple sclerosis relapses

21

My professional life is disturbed

Relationship difficulties (work, family, and partner/spouse)

22

My family life is disturbed

Relationship difficulties (work, family, and partner/spouse)

23

I feel alone

Relationship difficulties (work, family, and partner/spouse)

24

I need to rest in the morning

Fatigue

25

I need to rest in the afternoon

Fatigue

26

I feel tired

Fatigue

During my multiple sclerosis relapses

27

During a relapse, I feel my life is in brackets

Time perspective

28

I worry about the progression of my illness

Time perspective

29

I am occasionally aggressive

State of mind and sleep disorders

30

I am stressed due to my relapses

State of mind and sleep disorders

31

I have trouble sleeping

State of mind and sleep disorders associated

32

My sleep is disturbed because of my worries

State of mind and sleep disorders

33

I am in good spirits

State of mind and sleep disorders

Additional modules (33 items)

Coping module (8 items)

In the last 4 weeks, due to my multiple sclerosis

 34. I verbalize or express my difficulties

 35. My leisure activities are adapted to my state of health

 36. I need to play sports to combat the illness

 37. Charity work helps or could help me to combat the illness

 38. I need a leisure activity

 39. Cold showers do me good

 40. I fight against the illness

 41. I use personal resources to combat the illness (relaxation, physical activities, specific diet…)

Symptom module (20 items)

In the last 4 weeks, due to my multiple sclerosis

 42. I have had trouble staying attentive or concentrating

 43. I have trouble memorizing things

 44. I have trouble finding my words or constructing sentences

 45. My sleep is disturbed by pain

 46. My sleep is disturbed by sensory problems

 47. My sleep is disturbed by urinary problems

 48. I have impaired eyesight that interferes with my everyday life

 49. I have been troubled by urinary problems

 50. I have been troubled by intestinal problems

 51. I have been sensitive to changes in temperature

 52. I have trouble using my hand or hands

 53. I experience difficulties with my sense of touch

 54. I cannot bear bed linen or my clothes

 55. I get a burning feeling in my limbs

 56. I get pins and needles in the limbs

 57. I can feel electric shocks in my fingers or in my limbs

 58. I have trouble distinguishing between hot and cold water

 59. I have trouble walking

 60. I have loss of balance

 61. I am independent when on trips out

Treatment module (5 items)

In the last 4 weeks, due to my multiple sclerosis

 62. I can manage my treatment

 63. The side effects of my treatment cause me trouble

 64. My sleep is disturbed by my treatment

 65. I accept the idea of having to take a long-term treatment

 66. I trust my treatment

Rights and permissions

Reprints and permissions

About this article

Cite this article

Baroin, A., Chopard, G., Siliman, G. et al. Validation of a new quality of life scale related to multiple sclerosis and relapses. Qual Life Res 22, 1943–1954 (2013). https://doi.org/10.1007/s11136-012-0334-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-012-0334-0

Keywords

Search

Navigation