International Journal of Behavioral Medicine

, Volume 20, Issue 3, pp 450–460 | Cite as

The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions

  • Yamile MolinaEmail author
  • Seung W. Choi
  • David Cella
  • Deepa Rao



Although the impact of stigma has been highlighted for epileptic populations, the experiences of people living with other neurological conditions have been less studied.


In order to promote research on stigma among people with neurological conditions, we sought to develop and psychometrically validate an eight-item questionnaire measuring internalised and enacted stigma experienced by people with epilepsy, multiple sclerosis (MS), Parkinson’s disease (PD), stroke and amyotrophic lateral sclerosis (ALS).


We used item response theory methodologies to select items and field tested our items with 587 participants from eight academic medical centres across the USA.


We conducted exploratory and confirmatory factor analysis as well as examined the scale’s reliability and validity. In addition, we conducted an analysis of variance test to examine mean total score differences across the five neurological conditions. Data from people across conditions revealed that the shortened instrument conformed to an essentially unidimensional model of multifaceted stigma as a one-factor questionnaire with correlated residuals on a pair of items that distinctly measured internalised stigma.


Preliminary evidence suggests that the Stigma Scale for Chronic Illness 8-item version fits a unidimensional model, which assesses enacted and internalised stigma, and has adequate internal consistency/reliability and validity in relation to psychological distress and patient performance. Our results suggest fairly low stigma for neurological populations. In addition, our results suggest that stigma may be more severe for patients with ALS relative to those with MS and PD. In the future, the SSCI-8 scale could be used practically in clinic settings to examine stigma without the patient burden associated with lengthier scales.


Neurological disorder Epilepsy Quality of life Stigma Measurement 



The authors would like to thank two anonymous reviewers for their critical review of this study and Betsy J. Feldman, Ph.D. for her technical assistance with the statistical analysis for this project. This study was support by a contract from the National Institute for Neurological Disorders and Stroke number HHSN265200423601C Cella (PI) and K23 MH 084551 PI: Rao.


  1. 1.
    Jenkinson C, Fitzpatrick R, Swash M, Peto V, ALS-HPS Steering Group. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol. 2000;415:835–40.CrossRefGoogle Scholar
  2. 2.
    Perez L, Huang J, Jansky L, Nowindki C, Victorson D, Peterman A, Cella D. Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions. J Neurosci Nurs. 2007;39:342–53.PubMedCrossRefGoogle Scholar
  3. 3.
    Dallmeijer AJ, de Groot V, Roorda LD, Schepers VPM, Lindeman E, van den Berg LH, Beelen A, Dekker J, Fupro Study Group. Cross-diagnostic validity of the SF-36 physical functioning scale in patients with stroke, multiple sclerosis, and amyotrophic lateral sclerosis: a study using Rasch analysis. J Rehab Med. 2007;39:163–9.CrossRefGoogle Scholar
  4. 4.
    Pugh MJV, Copeland LA, Zeber JE, Cramer JA, Cavazos JE, Kazis LE. The impact of epilepsy on health status among younger and older adults. Epilepsia. 2005;46:1820–7.PubMedCrossRefGoogle Scholar
  5. 5.
    Heilman KM, Valenstein E, editors. Clinical neuropsychology. New York: Oxford University Press; 2004.Google Scholar
  6. 6.
    Rasquin SMC, Lodder J, Ponds RWHM, Winkens I, Jolles J, Verhey FRJ. Cognitive functioning after stroke: a one-year follow up study. Dementia Ger Cog Disor. 2004;18:138–44.CrossRefGoogle Scholar
  7. 7.
    Antonak RF, Livneh H. A review of research on psychosocial adjustment to impairment among persons with epilepsy. J Epilepsy. 1992;5:194–205.CrossRefGoogle Scholar
  8. 8.
    Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs. 2000;32:243–8.PubMedCrossRefGoogle Scholar
  9. 9.
    Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon and Schuster; 1963.Google Scholar
  10. 10.
    Harden CL, Kossoy A, Vera S, Nikolov B. Reaction to epilepsy in the workplace. Epilepsia. 2004;45:1134–40.PubMedCrossRefGoogle Scholar
  11. 11.
    Hermann B, Jacoby A. The psychosocial impact of epilepsy in adults. Epilepsy Behav. 2004;15:S11–6.CrossRefGoogle Scholar
  12. 12.
    Hill M. Overcoming the stigma of epilepsy. Neurol Asia. 2010;15:S21–4.Google Scholar
  13. 13.
    McLaughlin DP, Pachana NA, Mcfarland K. Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood. Seizure. 2007;17:281–7.PubMedCrossRefGoogle Scholar
  14. 14.
    Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4:171–8.PubMedGoogle Scholar
  15. 15.
    Taylor J, Baker G, Jacoby A. Levels of epilepsy stigma in an incident population and associated factors. Epilepsy Behav. 2011;21:255–60.PubMedCrossRefGoogle Scholar
  16. 16.
    Moore S, Knowles S. Beliefs and knowledge about Parkinson’s disease. E-J App Psychol Clin Soc Issues. 2006;2:15–21.CrossRefGoogle Scholar
  17. 17.
    Manzo JF. On the sociology and social orgnaization of stigma: some ethnomethodological insights. Hum Stud. 2004;27:401–16.CrossRefGoogle Scholar
  18. 18.
    McLaughlin ME, Bell MP, Stringer DY. Stigma and acceptance of persons with disabilites: understudied aspects of work diversity. Group Org Manag. 2004;29:302–33.CrossRefGoogle Scholar
  19. 19.
    Kumari P, Ram D, Nizamie SH, Goyal N. Stigma and quality of life in individuals with epilepsy: a preliminary report. Epilepsy Behav. 2009;15:358–61.PubMedCrossRefGoogle Scholar
  20. 20.
    Suurmeijer TPBM, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia. 2001;42:1160–8.PubMedCrossRefGoogle Scholar
  21. 21.
    Ye SY. The lived experience of struggling against illness for patients with amyotrophic lateral sclerosis. J Kor Acad Nurs. 2008;38:802–12.CrossRefGoogle Scholar
  22. 22.
    Corrigan P, Penn DL. Lessons from social psychology on discrediting psychiatric stigma. Am Psychol. 1999;54:756–76.CrossRefGoogle Scholar
  23. 23.
    Corrigan P, Watson A. The paradox of self-stigma and mental illness. Clin Psychol Sci Pract. 2002;9:35–53.CrossRefGoogle Scholar
  24. 24.
    Corrigan P, Watson A, Barr L. The self-stigma of mental illness: implications for self-esteem and self-efficacy. J Soc Clin Psychol. 2006;25:875–84.CrossRefGoogle Scholar
  25. 25.
    Fung KM, Tsang HW, Corrigan PW. Self-stigma of people with schizophrenia as a predictor of their adherence to psychosocial treatment. Psych Rehab J. 2008;32:95–104.CrossRefGoogle Scholar
  26. 26.
    Rusch N, Corrigan PW, Wassel A, Micahels P, Larson JE, Olschewski M, Wilkniss S, Batia K. Self-stigma, group identification, perceived legitimacy of discrimination and mental health service use. Brit J Psych. 2009;195:551–2.CrossRefGoogle Scholar
  27. 27.
    Rusch N, Holzer A, Hermann C, Schramm E, Jacob GA, Bohus M, Lieb K, Corrigan PW. Self stigma in women with borderline personality disorder and women with social phobia. J Nerv Ment Dis. 2006;194:766–73.PubMedCrossRefGoogle Scholar
  28. 28.
    Watson AC, Corrigan PW, Larson JE, Sells M. Self-stigma in people with mental illness. Schizophr Bull. 2007;33:1312–8.PubMedCrossRefGoogle Scholar
  29. 29.
    Link B. Understanding labeling effects in the area of mental disorders: an assessment of the effects of expectations of rejection. Am Sociol Rev. 1987;52:96–112.CrossRefGoogle Scholar
  30. 30.
    Pachankis JE. The psychological implications of concealing a stigma: a cognitive-affective-behavioral model. Psych Bull. 2007;133:328–45.CrossRefGoogle Scholar
  31. 31.
    Scambler G. Health-related stigma. Sociol Health Ill. 2009;31:441–55.CrossRefGoogle Scholar
  32. 32.
    Jacoby A. Felt versus enacted stigma: a concept revisited. Soc Sci Med. 1994;38:269–74.PubMedCrossRefGoogle Scholar
  33. 33.
    Looper KJ, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004;57:373–8.PubMedGoogle Scholar
  34. 34.
    Suzkukamo Y, Ohbu S, Kondo T, Kohmoto J, Fukuhara S. Psychological adjustment has a greater effect on health-related quality of life than on severity of disease in Parkinson’s disease. Move Disord. 2006;21:761–6.CrossRefGoogle Scholar
  35. 35.
    Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Ed Prev. 2003;151:49–69.CrossRefGoogle Scholar
  36. 36.
    Rao D, Andrasik M, Acharya X, Simoni J. Internalized stigma among African Americans living with HIV: preliminary scale development based on qualitative data. In: Liamputtong P, editor. Stigma, discrimination, and living with HIV/AIDS: a cross-cultural perspective. Springer; 2012 (in press).Google Scholar
  37. 37.
    Rao D, Choi S, Victorson D, Bode R, Heinemann A, Peterman A, Cella D. Measuring stigma across neurological conditions: the development of the Stigma Scale for Chronic Illness (SSCI). Qual Life Res. 2009;18:585–95.PubMedCrossRefGoogle Scholar
  38. 38.
    Rao D, Feldman B, Fredericksen R, Crane P, Simoni J, Kitahata M, Crane H. A structural equation model of HIV-related stigma, depressive symptoms, and medication adherence. AIDS Behav. 2011. doi: 10.1007/s10461-011-9915-0.
  39. 39.
    Cella D, Gershon R, Lai J, Choi S. The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Qual Life Res. 2007;16(Supplement 1):133–41.PubMedCrossRefGoogle Scholar
  40. 40.
    Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B. The Patient Reported Outcomes Measurement Informational System PROMIS; overview and developmental work, 2004–2006. Med Care. 2007;455:S3–11.CrossRefGoogle Scholar
  41. 41.
    DeWalt DA, Rothrock N, Yount S, Stone AA. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;455(Supplement 1):S12–21.CrossRefGoogle Scholar
  42. 42.
    Hambleton RR, Swaminathan H, Rogers HJ. Fundamentals of item response theory. Newbury Park: Sage; 1991.Google Scholar
  43. 43.
    Cella D, Chang C-H. Response to Hays et al. and McHorney and Cohen: A discussion of item response theory and its applications in health status assessment. Med Caer. 2000;38:S66–72.Google Scholar
  44. 44.
    Hays RD, Morales LS, Reise SP. Item response theory and health outcomes measurement in the 21st century. Med Care. 2000;38:S28–42.CrossRefGoogle Scholar
  45. 45.
    McHorney CA, Cohen AS. Equating health status measures with item response theory: illustrations with functional status items. Med care. 2000;38:S43–59.CrossRefGoogle Scholar
  46. 46.
    Reeve B, Fayers P. Applying item response theory modeling for evaluating questionnaire item and scale properties. In: Fayers P, Hays R, editors. Assessing quality of life in clinical trials: methods of practice. 2nd ed. USA: Oxford University Press; 2005. p. 55–73.Google Scholar
  47. 47.
    National Institute of Neurological Disorders and Stroke (NINDS). User manual for the quality of life in neurological disordres (Neuro-QOL) measures, version 1.0. September 2010.Google Scholar
  48. 48.
    Mplus version 6.0. [Computer software]. Los Angeles: Muthén Muthén.Google Scholar
  49. 49.
    Gershon RC, Lai JS, Bode R, Choi S, Moy C, Bleck T, et al. NeuroQOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2011. doi: 10.1007/s11136-011-9958-8.
  50. 50.
    Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHOQUOL-BRIEF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL Group. Qual Life Res. 2003;13:299–310.CrossRefGoogle Scholar
  51. 51.
    Thompson B, Daniel LG. Factor analytic evidence for construct validity of scores: a historical overview and some guidelines. Ed Psychol Measure. 1996;56:197–208.CrossRefGoogle Scholar
  52. 52.
    Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Friedman SJ, Meyers BS. Stigma as a barrier to recovery: perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psych Serv. 2001;52:1615–20.CrossRefGoogle Scholar
  53. 53.
    Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Raue P, Friedman SJ, Meyers BS. Perceived stigma as a predictor of treatment discontinuation in young and older outpatients with depression. Am J Psych. 2001;158:479–81.CrossRefGoogle Scholar

Copyright information

© International Society of Behavioral Medicine 2012

Authors and Affiliations

  • Yamile Molina
    • 1
    Email author
  • Seung W. Choi
    • 2
  • David Cella
    • 2
  • Deepa Rao
    • 3
  1. 1.Fred Hutchinson Cancer Research CenterSeattleUSA
  2. 2.Northwestern University, Feinberg School of MedicineChicagoUSA
  3. 3.University of WashingtonSeattleUSA

Personalised recommendations