Feasibility of internet-based health-related quality of life data collection in a large patient cohort

• Published in: Journal of medical Internet research 2010-08, Vol.12 (3), p.e35-e35
• Main Authors: Bhinder, Sacha, Chowdhury, Noori, Granton, John, Krahn, Murray, Tullis, D Elizabeth, Waddell, Thomas K, Singer, Lianne G
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Aged; Canada; Chronic illnesses; Chronic obstructive pulmonary disease; Clinics; Cohort analysis; Cohort Studies; Communication; Completion; Data collection; Electronic mail systems; Email; Employment status; Feasibility; Feasibility Studies; Female; Health Status; Heart Transplantation; Hospitals; Humans; Internet; Internet access; Longitudinal Studies; Lung diseases; Lung Transplantation; Male; Males; Marital status; Middle Aged; Original Paper; Patient care; Patients; Population; Quality of Life; Questionnaires; Regression Analysis; Rural areas; Rural Population; Societies, Medical; Sociodemographic aspects; Sociodemographics; Surveys and Questionnaires; Telemedicine; Transplants; Transplants & implants; Treatment Outcome; Unemployed people; Urban Population; Websites; Willingness
• ISSN: 1438-8871; 1438-8871
• DOI: 10.2196/jmir.1214

Patient registries are commonly used to track survival and medical outcomes in large cohorts. However, large-scale collection of health-related quality of life (HRQOL) data is more challenging because such data must be collected directly from patients. Internet-based HRQOL questionnaires are a potential solution, allowing home data collection with immediate storage in a central database. Our objectives were to investigate the sociodemographic predictors of Internet use and willingness to convey HRQOL information over the Internet in a Canadian tertiary care patient population and to determine whether Internet use patterns of tertiary care patients differ from those of the general Canadian population. Additionally, we sought to identify the success of home completion of Internet-based HRQOL questionnaires, as well as factors hindering home completion. We surveyed 644 patients at the Toronto General and St. Michael's Hospitals from November 2003 through July 2006 within a prospective, longitudinal cohort study of HRQOL in patients with lung disease or lung transplants. Using multiple logistic regression, we assessed patient age, gender, rurality, marital status, and employment or education status as potential sociodemographic predictors of having an Internet-accessible home computer, using email at least weekly, and willingness to complete a quality of life questionnaire over the Internet. Patients electing to complete questionnaires over the Internet were followed from September 2005 through March 2008 to assess completion of HRQOL questionnaires from home, identify barriers for noncompletion, and determine sociodemographic predictors for home completion. Of the 644 patients, the median age was 51 years, with a similar number of males and females. Most were urban Ontario residents, were unemployed, and were married or in a common-law relationship. Having an Internet-accessible home computer was reported by 79.7% (513/644) of patients and use of email at least weekly by 66.5% (414/623) of patients. A majority of patients (57.1% 368/644) were willing to complete HRQOL questionnaires over the Internet via an emailed link. Of the participating 644 patients, 368 elected to complete future questionnaires from home and, as part of a gradual roll-out of the home HRQOL questionnaire, 211 were sent emails inviting them to do so. Of the invited patients, 78% (165/211) completed at least one questionnaire from home. The most common reason for noncompletion was a lack o