Validity of Internet-based longitudinal study data: the elephant in the virtual room.

BACKGROUND: Internet-based data collection relies on well-designed and validated questionnaires. The theory behind designing and validating questionnaires is well described, but few practical examples of how to approach validation are available in the literature. OBJECTIVE: We aimed to validate data collected in an ongoing Internet-based longitudinal health study through direct visits to participants and recall of their health records. We demonstrate that despite extensive pre-planning, social desirability can still affect data in unexpected ways and that anticipation of poor quality data may be confounded by positive validation. METHODS: Dogslife is a large-scale, Web-based longitudinal study of canine health, in which owners of Labrador Retrievers were recruited and questioned at regular intervals about the lifestyle and health of their dogs using an Internet-based questionnaire. The Dogslife questionnaire predominantly consists of closed-answer questions. In our work, two separate validation methodologies were used: (1) direct interviews with 43 participants during visits to their households and (2) comparison of owner-entered health reports with 139 historical health records. RESULTS: Our results indicate that user-derived measures should not be regarded as a single category; instead, each measurement should be considered separately as each presents its own challenge to participants. We recommend trying to ascertain the extent of recall decay within a study and, if necessary, using this to guide data collection timepoints and analyses. Finally, we recommend that multiple methods of communication facilitate validation studies and aid cohort engagement. CONCLUSIONS: Our study highlighted how the theory underpinning online questionnaire design and validation translates into practical data issues when applied to Internet-based studies. Validation should be regarded as an extension of questionnaire design, and that validation work should commence as soon as sufficient data are available. We believe that validation is a crucial step and hope our suggested guidelines will help facilitate validation of other Internet-based cohort studies.

Dogslife: a web-based longitudinal study of Labrador Retriever health in the UK.

BACKGROUND: Dogslife is the first large-scale internet-based longitudinal study of canine health. The study has been designed to examine how environmental and genetic factors influence the health and development of a birth cohort of UK-based pedigree Labrador Retrievers. RESULTS: In the first 12 months of the study 1,407 Kennel Club (KC) registered eligible dogs were recruited, at a mean age of 119 days of age (SD 69 days, range 3 days - 504 days). Recruitment rates varied depending upon the study team's ability to contact owners. Where owners authorised the provision of contact details 8.4% of dogs were recruited compared to 1.3% where no direct contact was possible. The proportion of dogs recruited was higher for owners who transferred the registration of their puppy from the breeder to themselves with the KC, and for owners who were sent an e-mail or postcard requesting participation in the project. Compliance with monthly updates was highly variable. For the 280 dogs that were aged 400 days or more on the 30th June 2011, we estimated between 39% and 45% of owners were still actively involved in the project. Initial evaluation suggests that the cohort is representative of the general population of the KC registered Labrador Retrievers eligible to enrol with the project. Clinical signs of illnesses were reported in 44.3% of Labrador Retrievers registered with Dogslife (median age of first illness 138 days), although only 44.1% of these resulted in a veterinary presentation (median age 316 days). CONCLUSIONS: The web-based platform has enabled the recruitment of a representative population of KC registered Labrador Retrievers, providing the first large-scale longitudinal population-based study of dog health. The use of multiple different methods (e-mail, post and telephone) of contact with dog owners was essential to maximise recruitment and retention of the cohort.