Applied Research in Quality of Life

, Volume 11, Issue 3, pp 971–982 | Cite as

Development of a Health Related Quality of Life Measure for Adolescents and Young Adults Following Invasive Meningococcal Disease

  • Mark Shevlin
  • Pietro G. Coen
  • Jennie Borg
  • Robert Booy
  • Russell M. Viner
  • Deborah ChristieEmail author


This study describes the key areas that matter to adolescent survivors of Invasive Meningococcal Disease (IMD). Satisfaction with Life After Meningitis is a brief multidimensional measure of health related quality of life that is reliable and correlates with criterion variables in a theoretically meaningful way. To develop a Health Related Quality of Life (HRQoL) measure for adolescent and young adult survivors of (IMD) we used a cross-sectional study and focus groups. The study was conducted in two phases. In Phase 1 a pool of potential items were generated based on the following: a review of existing measures, focus groups with IMD survivors, and an expert group consultation. Phase 2 involved administration of the questionnaire to a sample of adolescent and young adult IMD survivors. Factor analysis suggested a correlated four factor solution: Wellbeing, Positive about Future, Social Support, and Confidence. These factors were significantly correlated in a theoretically predictable way with scores from the Beck Depression Inventory (correlations ranged from −0.77 to −0.81) and the eight domains of the SF-36 Health Survey (correlations ranged from 0.32 to 0.79). The reliability of all subscales was high ranging from 0.85 to 0.92. The Satisfaction with Life After Meningitis (SLAM) questionnaire is a HRQoL self-report measure that produces reliable scores and is appropriate for use with young survivors of IMD. There is also evidence of concurrent validity with existing measures of physical and psychological well-being.


Adolescence Young adults Invasive meningococcal disease Health related quality of life Questionnaire 



Beck depression inventory


Invasive meningococcal disease


Health related quality of life


Quality of life


Satisfaction with life after meningitis



The development of SLAM was funded by the Meningitis Trust. The Meningitis Trust were not involved in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the final manuscript.

We would like to thank all the young people who gave their time to meet with us and share their ideas and experiences.

Financial Disclosure

The authors have no financial relationships relevant to this article to disclose.

Conflict of Interest

The authors have no conflicts of interest to disclose.

Funding Source

The study was funded by the Meningitis Trust


  1. Apajasalo, M., Sintonen, H., Holmberg, C., Sinkkonen, J., Aalberg, V., Pihko, H., Siimes, M. A., Kaitila, I., Mäkelä, A., Rantakari, K., Anttila, R., & Rautonen, J. (1996). Quality of life in early adolescence: a sixteen-dimensional health-related measure (16D). Quality of Life Research, 5(2), 205–11.CrossRefGoogle Scholar
  2. Arnau, R. C., Meagher, M. W., Norris, M. P., & Bramson, R. (2001). Psychometric evaluation of the Beck Depression Inventory-II with primary care medical patients. Health Psychology, 20, 112–119.CrossRefGoogle Scholar
  3. Aspesberro, F., Mangione-Smith, R., & Zimmerman, J.J. (2015). Health-related quality of life following pediatric critical illness. Intensive Care Med. 2015 Apr 8. DOI  10.1007/s00134-015-3780-7.
  4. Baraff, L. J., Lee, S. I., & Schriger, D. L. (1993). Outcomes of bacterial meningitis in children: a meta-analysis. Pediatric Infectious Disease Journal, 12, 389–94.CrossRefGoogle Scholar
  5. Beck, A. T. Beck Depression Inventory. 1987. USA, Psychological Corporation.Google Scholar
  6. Bellamy, N., Anastassiades, T. P., Buchanan, W. W., Davis, L., Lee, P., & McCain, G. A. (1991). Rheumatoid arthritis anti-rheumatic trials. III. Setting the delta for clinical trials of anti-rheumatic drugs-results of a consensus development (Delphi) exercise. Journal of Rheumatology, 18, 1908–1915.Google Scholar
  7. Borg, J., Christie, D., Coen, P., Booy, R., & Viner, R. (2010). Outcomes of meningococcal disease in adolescence: a prospective matched cohort study. Pediatrics, 123(3), e502–9.CrossRefGoogle Scholar
  8. Bowling, A. (1995). Measuring disease: a review of disease-specific quality of life measurement scales. Open University Press.Google Scholar
  9. Chin, J., Sato, P. A., & Mann, J. M. (1990). Projections of HIV infections and AIDS cases to the year 2000. Bulletin of the World Health Organization, 68, 1–11.Google Scholar
  10. Christie, D., Viner, R., Knox, K., Coen, P., Wang, H., El Bashir, H., Patel, B., & Booy, R. (2011). Long-term outcomes of pneumococcal meningitis in childhood and adolescence. European Journal of Pediatrics. doi: 10.1007/s00431-010-1390-5.Google Scholar
  11. de Winter, J. C. F., Dodou, D., & Wieringa, P. A. (2009). Exploratory factor analysis with small sample sizes. Multivariate Behavioral Research, 44, 147–181.Google Scholar
  12. Deyo, R. A., & Patrick, D. L. (1989). Barriers to the use of health status measures in clinical investigation, patient care, and policy research. Medical Care, 27, S254–S268.CrossRefGoogle Scholar
  13. Eiser, C. & Morse, R. (2001). “Quality of life measures in chronic diseases of childhood.”, Health Technol Assess, vol. 5.Google Scholar
  14. Erickson, L., & De Wals, P. (1998). Complications and sequelae of meningococcal disease in Quebec, Canada. Clinical Infectious Diseases, 26, 1159–1164.CrossRefGoogle Scholar
  15. Fellick, J. M., Sills, J. A., Marzouk, O., Hart, C. A., Cooke, R. W., & Thomson, A. P. (2001). Neurodevelopmental outcome in meningococcal disease: a case–control study. Archives of Disease in Childhood, 85(1), 6–11.CrossRefGoogle Scholar
  16. Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: bibliographic study of patient assessed health outcome measures. BMJ, 324, 1417.CrossRefGoogle Scholar
  17. Gill, T. M., & Feinstein, A. R. (1994). A critical appraisal of the quality-of-life measurements. JAMA, 272, 619–626.CrossRefGoogle Scholar
  18. Guyatt, G. H., Feeny, D. H., & Patrick, D. L. (1993). Measuring health-related quality of life. Annals of Internal Medicine, 118, 622–629.CrossRefGoogle Scholar
  19. Harrison, L. H., Pass, M. A., Mendelsohn, A. B., Egri, M., Rosenstein, N. E., Bustamante, A. R. N., et al. (2001). 2001 Invasive meningococcal disease in adolescents and young adults. JAMA, 286(6), 694–9.CrossRefGoogle Scholar
  20. Jenkinson, C., Layte, R., Wright, L., et al. (1996). The UK SF-36: An analysis and interpretation manual. Oxford: Health Services Research Unit.Google Scholar
  21. Jenkinson, C., Stewart-Brown, S., Petersen, S., & Paice, C. (1999). Assessment of the SF-36 version 2 in the United kingdom. Journal of Epidemiology and Community Health, 53, 46–50.CrossRefGoogle Scholar
  22. Jones, J., & Hunter, H. (1995). Consensus methods for medical and health services research. British Medical Journal, 311, 376–380.CrossRefGoogle Scholar
  23. Jöreskog, K., & Sörbom, D. (2004). LISREL 8.70. Chicago: Scientific Software Inc.Google Scholar
  24. Khan, J. P., Bernstein, S. J., Leape, L. L., Hilborne, L. H., Park, R. E., & Parker, L. (1994). Measuring the necessity of medical procedures. Medical Care, 32, 357–365.CrossRefGoogle Scholar
  25. Krefetz, D. G., Steer, R. A., Gulab, N. A., & Beck, A. T. (2002). Convergent validity of the Beck Depression Inventory-II with the Reynolds Adolescent Depression Scale in psychiatric inpatients. Journal of Personality Assessment, 78, 451–460.CrossRefGoogle Scholar
  26. Linstone, H. A. & Turoff, M. (1975). The Delphi Method: Techniques and Applications. Addison-Wesley, Reading, Mass.Google Scholar
  27. Mobily, P. R., Herr, K. A., & Kelly, L. S. (2007). Cognitive-behavioural techniques to reduce pain: a validation study. International Journal of Nursing Studies, 30, 537–548.CrossRefGoogle Scholar
  28. Naess, A., Halstensen, A., Nyland, H., Pedersen, S. H., Moller, P., Borgmann, R., et al. (1994). Sequelae one year after meningococcal disease. Acta Neurologica Scandinavica, 89(2), 139–142.CrossRefGoogle Scholar
  29. Nunnally, J., & Bernstein, I. (1994). Psychometric theory. New York: McGraw-Hill.Google Scholar
  30. Oranga, H. M., & Nordberg, E. (1993). The Delphi panel method for generating health information. Health Policy and Planning, 8, 405–412.CrossRefGoogle Scholar
  31. Raphael, D., Rukholm, E., Brown, I., Hill-Bailey, P., & Donato, E. (1996). The quality of life profile - adolescent version: background, description and initial validation.Google Scholar
  32. Ridley, S.A., Chrispin, P.S., Scotton, H., Rogers, J., & Lloyd, D. (1997). Changes in quality of life after intensive care: comparison with normal data. Anaesthesia, 52(3), 195–202.Google Scholar
  33. Sander, J., Bay, D., & Gedde-Dahl, T. W. (1984). Late sequelae after meningococcal disease. A controlled study in young men. NIPH Annals, 7, 3–11.Google Scholar
  34. Starfield, B., Bergner, M., Ensminger, M., Riley, A., Ryan, S., Green, B., McGauhey, P., Skinner, A. & Kim, S (1993). Adolescent health status measurement: development of the child health and illness profile. Pediatrics, 91(2).Google Scholar
  35. Steiger, J. H. (1990). Structural model evaluation and modification: an interval estimation approach. Multivariate Behavioural Research, 25, 173–180.CrossRefGoogle Scholar
  36. Viner, R. M., Booy, R., Johnson, H., Edmunds, W. J., Hudson, L., Bedford, H., & Christie, D. (2012). Outcomes of invasive meningococcal serogroup B disease in children and adolescents (MOSAIC): a case–control study. Lancet Neurology, 11, 774–783. doi: 10.1016/s1474-4422(12)70180-1.CrossRefGoogle Scholar
  37. Ware, J.E., Kosinski, M., & Gandek, B. (1993a). SF-36 Health Survey: Manual & Interpretation Guide. Lincoln, RI: QualityMetric Incorporated; 2000.Google Scholar
  38. Ware, J.E., Snow, K.K., Kosinski, M., et al. (1993b). SF-36 Health Survey: manual and interpretation guide. Boston, Massachusetts: The Health Institute, New England Medical Center.Google Scholar
  39. WHO QOL Group. (1995). World Health Organisation Quality of Life assessment (WHO QOL). Social Science and & Medicine, 41, 1403.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht and The International Society for Quality-of-Life Studies (ISQOLS) 2015

Authors and Affiliations

  • Mark Shevlin
    • 1
  • Pietro G. Coen
    • 2
  • Jennie Borg
    • 3
  • Robert Booy
    • 4
  • Russell M. Viner
    • 3
  • Deborah Christie
    • 5
    Email author
  1. 1.School of Psychology, Faculty of Life and Health SciencesUniversity of Ulster at Magee CampusNorthern IrelandUK
  2. 2.Centre for Child Health, Barts and the London School of Medicine and Dentistry, Queen Mary CollegeUniversity of LondonLondonUK
  3. 3.UCL Institute of Child HealthLondonUK
  4. 4.National Centre for Immunisastion research and SurveillanceChildren’s Hospital at Westmead and University of Sydney and Sydney Institute of Emerging Infectious Diseases and BiosecuritySydneyAustralia
  5. 5.Paediatric and Adolescent PsychologyUniversity College London HospitalsLondonUK

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