Literature DB >> 9391930

Quality-of-life research on the Internet: feasibility and potential biases in patients with ulcerative colitis.

R M Soetikno1, R Mrad, V Pao, L A Lenert.   

Abstract

OBJECTIVE: The World Wide Web (WWW) is a new communications medium that permits investigators to contact patients in nonmedical settings and study the effects of disease on quality of life through self-administered questionnaires. However, little is known about the feasibility and, what is more important, the validity of this approach. An on-line survey for patients with ulcerative colitis (UC) and patients whose UC had been treated with surgical procedures was developed. To understand how patients on the WWW might differ from those in practice and the potential biases in conducting epidemiological research in volunteers recruited on the Internet, post-surgery patients who responded to the WWW survey were compared with those in a surgical practice.
SETTING: The Internet and private practice surgical clinic. MAIN OUTCOMES: Scores from the Short form 36 (SF-36) Health Assessment Questionnaire and the Self-Administered Inflammatory Bowel Disease Questionnaire (IBDQ).
RESULTS: Over a 5-month period, 53 post-surgery patients enrolled in the Internet study; 47 patients from a surgical clinic completed the same computer-based questionnaire. Surgically treated patients on the WWW were younger than their clinic counterparts (median age category 35-44 years vs. 45-54 years, p = 0.01) but more ill with a lower summary IBDQ score (168 vs. 186, p = 0.019) and lower health status across almost all dimensions of the SF-36 (p = 0.016).
CONCLUSIONS: It is feasible to conduct epidemiological research on the effects of UC on quality of life on the Web; however, systematic differences in disease activity between volunteer patients on the WWW and "in the clinic" may limit the applicability of results.

Entities:  

Mesh:

Year:  1997        PMID: 9391930      PMCID: PMC61260          DOI: 10.1136/jamia.1997.0040426

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   4.497


  13 in total

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Authors:  L A Lenert; D J Cher; M K Goldstein; M R Bergen; A Garber
Journal:  Med Decis Making       Date:  1998 Jan-Mar       Impact factor: 2.583

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4.  Course of ulcerative colitis: analysis of changes in disease activity over years.

Authors:  E Langholz; P Munkholm; M Davidsen; V Binder
Journal:  Gastroenterology       Date:  1994-07       Impact factor: 22.682

5.  Automated computer interviews to elicit utilities: potential applications in the treatment of deep venous thrombosis.

Authors:  L A Lenert; R M Soetikno
Journal:  J Am Med Inform Assoc       Date:  1997 Jan-Feb       Impact factor: 4.497

6.  Health status assessment via the World Wide Web.

Authors:  D S Bell; C E Kahn
Journal:  Proc AMIA Annu Fall Symp       Date:  1996

7.  Quality of life: a valid and reliable measure of therapeutic efficacy in the treatment of inflammatory bowel disease. Canadian Crohn's Relapse Prevention Trial Study Group.

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Journal:  Gastroenterology       Date:  1994-02       Impact factor: 22.682

8.  Does self-administration of a quality of life index for inflammatory bowel disease change the results?

Authors:  E J Irvine; B G Feagan; C J Wong
Journal:  J Clin Epidemiol       Date:  1996-10       Impact factor: 6.437

9.  Computer-based interview for screening blood donors for risk of HIV transmission.

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Journal:  JAMA       Date:  1992-09-09       Impact factor: 56.272

10.  A new measure of health status for clinical trials in inflammatory bowel disease.

Authors:  G Guyatt; A Mitchell; E J Irvine; J Singer; N Williams; R Goodacre; C Tompkins
Journal:  Gastroenterology       Date:  1989-03       Impact factor: 22.682

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  17 in total

1.  Feasibility of quality-of-life research on the Internet: a follow-up study.

Authors:  J R Treadwell; R M Soetikno; L A Lenert
Journal:  Qual Life Res       Date:  1999-12       Impact factor: 4.147

2.  Methods for the design and administration of web-based surveys.

Authors:  T K Schleyer; J L Forrest
Journal:  J Am Med Inform Assoc       Date:  2000 Jul-Aug       Impact factor: 4.497

3.  Randomized testing of alternative survey formats using anonymous volunteers on the World Wide Web.

Authors:  D S Bell; C M Mangione; C E Kahn
Journal:  J Am Med Inform Assoc       Date:  2001 Nov-Dec       Impact factor: 4.497

4.  Use of the internet to study the utility values of the public.

Authors:  Leslie A Lenert; Ann E Sturley
Journal:  Proc AMIA Symp       Date:  2002

5.  Feasibility of using a handheld electronic device for the collection of patient reported outcomes data from children.

Authors:  Lisa A Vinney; John D Grade; Nadine P Connor
Journal:  J Commun Disord       Date:  2011-10-20       Impact factor: 2.288

6.  Internet-based data inclusion in a population-based European collaborative follow-up study of inflammatory bowel disease patients: description of methods used and analysis of factors influencing response rates.

Authors:  Frank L Wolters; Gilbert van Zeijl; Jildou Sijbrandij; Frederik Wessels; Colm O'Morain; Charles Limonard; Maurice G Russel; Reinhold W Stockbrugger
Journal:  World J Gastroenterol       Date:  2005-12-07       Impact factor: 5.742

7.  Information technology in the community: the right tools for the job.

Authors:  P F Brennan
Journal:  J Am Med Inform Assoc       Date:  1997 Nov-Dec       Impact factor: 4.497

8.  Acceptability of computerized visual analog scale, time trade-off and standard gamble rating methods in patients and the public.

Authors:  L A Lenert; A E Sturley
Journal:  Proc AMIA Symp       Date:  2001

9.  The reliability and internal consistency of an Internet-capable computer program for measuring utilities.

Authors:  L A Lenert
Journal:  Qual Life Res       Date:  2000       Impact factor: 4.147

10.  The validity of an Internet-based Self-assessment Program for Depression.

Authors:  Chao Cheng Lin; Yun Chuan Li; Ya Mei Bai; Shih Jen Tsai; Mei Chun Hsiao; Chia Hsuan Wu; Chia Yih Liu; Jen Yeu Chen
Journal:  AMIA Annu Symp Proc       Date:  2003
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