Measuring the effects of online health information for patients: item generation for an e-health impact questionnaire

Laura Kelly, Crispin Jenkinson, Sue Ziebland, Laura Kelly, Crispin Jenkinson, Sue Ziebland

Abstract

Objective: The internet is a valuable resource for accessing health information and support. We are developing an instrument to assess the effects of websites with experiential and factual health information. This study aimed to inform an item pool for the proposed questionnaire.

Methods: Items were informed through a review of relevant literature and secondary qualitative analysis of 99 narrative interviews relating to patient and carer experiences of health. Statements relating to identified themes were re-cast as questionnaire items and shown for review to an expert panel. Cognitive debrief interviews (n=21) were used to assess items for face and content validity.

Results: Eighty-two generic items were identified following secondary qualitative analysis and expert review. Cognitive interviewing confirmed the questionnaire instructions, 62 items and the response options were acceptable to patients and carers.

Conclusion: Using a clear conceptual basis to inform item generation, 62 items have been identified as suitable to undergo further psychometric testing.

Practice implications: The final questionnaire will initially be used in a randomized controlled trial examining the effects of online patient's experiences. This will inform recommendations on the best way to present patients' experiences within health information websites.

Keywords: Cognitive debrief interviews; E-health; Information; Patients’ experiences; Secondary data analysis.

Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Figures

Fig. 1
Fig. 1
Steps taken to develop item pool.

References

    1. Department of Health . Stationary Office; London: 2010. Equity and excellence: liberating the NHS.
    1. Department of Health . Stationary Office; London: 2004. Better information, better choices, better health.
    1. Department of Health . Stationary Office; London: 2008. High quality care for all NHS next stage review final report.
    1. Dutton W.H., Blank G. Oxford Internet Institute, University of Oxford; 2011. Next generation users: the internet in Britain. Oxford internet survey 2011.
    1. Pulman A. A patient centred framework for improving LTC quality of life through Web 2.0 technology. Health Inform J. 2010;16:15–23.
    1. Fox S. Peer-to-peer healthcare: many people—especially those living with chronic or rare diseases—use online connections to supplement professional medical advice. Washington: Pew Internet and American Life Project, <>; 2011 [cited 20.02.13].
    1. Streiner D., Norman G. Oxford University Press; Oxford, NY: 2008. Health measurement scales: a practical guide to their development and use.
    1. Hays R., Revicki D. Reliability and validity (including responsiveness) In: Fayers R., Hays R., editors. Assessing quality of life in clinical trials. Oxford University Press; Oxford, NY: 2005. pp. 25–40.
    1. U.S. Department of Health and Human Services Food and Drug Administration . U.S. Food and Drug Administration; Silver Spring, MD: 2009. Guidance for industry: patient-reported outcome measures. Use in medical product development to support labeling claims.
    1. Lohr K.N. Assessing health status and quality-of-life instruments: attributes and review criteria. Qual Life Res. 2002;11:193–205.
    1. European Medicines Agency. Reflection paper on the regulatory guidance for the use of health-related quality of life (HRQL) measures in the evaluation of medicinal products. EMEA/CHMP/EWP139391/2004. London; 2004.
    1. Bowling A. Open University Press; Berkshire, NY: 2005. Measuring health: a review of quality of life measurement scales.
    1. Kerr C., Nixon A., Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10:269–281.
    1. Ziebland S., Wyke S. Health and illness in a connected world: how might seeing and sharing experiences on the internet affect people's health? Milbank Q. 2012;90:219–249.
    1. Heaton J. SAGE Publications; London/Thousand Oaks/New Delhi: 2004. Reworking qualitative data.
    1. Lowe P., Powell J., Griffiths F., Thorogood M., Locock L. “Making it all normal”: the role of the internet in problematic pregnancy. Qual Health Res. 2009;19:1476–1484.
    1. Hunt K., France E., Ziebland S., Field K., Wyke S. ‘My brain couldn’t move from planning a birth to planning a funeral’: a qualitative study of parents’ experiences of decisions after ending a pregnancy for fetal abnormality. Int J Nurs Stud. 2009;46:1111–1121.
    1. Ziebland S., McPherson A. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness) Med Educ. 2006;40:405–414.
    1. NatCen Social Research . NatCen; London: 2012. Framework. [cited 01.11.12]
    1. McColl E. Developing questionnaires. In: Fayers R., Hays R., editors. Assessing quality of life in clinical trials. Oxford University Press; Oxford, NY: 2005. pp. 9–24.
    1. Pope C., Ziebland S., Mays N. Analysing qualitative data. Brit Med J. 2000;320:114–116.
    1. Ritchie J., Spencer L. Qualitative data analysis for applied policy research. In: Bryman A., Burgess R.G., editors. Analysing qualitative data. Routledge; London/New York: 1994. pp. 173–194.
    1. Sillence E., Briggs P., Harris P.R., Fishwick L. How do patients evaluate and make use of online health information? Soc Sci Med. 2007;64:1853–1862.
    1. Robson C. John Wiley and Sons Ltd.; Oxford: 2002. Real world research: a resource for social scientists and practitioner-researchers.
    1. Willis G., Lessler J.T. Research Triangle Institute; Rockville: 1999. Question appraisal system (QAS-99)
    1. Willis G.B. Sage Publications Inc.; London: 2005. Cognitive interviewing: a tool for improving questionnaire design.
    1. Willis G.B. Short course presented at the 1999 meeting of the American Statistical Association. 1999. Cognitive interviewing: a “how to” guide. [cited 22.02.13]
    1. Wilson M. Lawrence Erlbaum Associates; NJ: 2005. Constructing measures: an item response modeling approach.
    1. Eysenbach G., Powell J., Kuss O., Eun-Ryoung S. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. J Amer Med Assoc. 2002;287:2691–2700.
    1. Chapple A., Evans J., Ziebland S. An alarming prognosis: how people affected by pancreatic cancer use (and avoid) internet information. Policy Internet. 2012;4:3.
    1. Eysenbach G., Powell J., Englesakis M., Rizo C., Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. Brit Med J. 2004;328:1166.

Source: PubMed

Sponsor e collaboratori

Condizioni mediche

Interventi farmacologici

3
Sottoscrivi