Patient reported outcome measures (PROMs) provide valuable insight into patients’ experiences and are an important part of high-quality healthcare. Used in clinical and research settings, these standardized, validated questionnaires measure the patients’ perception (without other’s influences) of their condition and the impact of healthcare interventions (1, 2). PROMs often ask patients to self-report general well-being and quality of life, symptoms, functional status, and condition-specific outcomes (1). Integrating PROMs into practice facilitates better communication and engagement between healthcare providers and their patients, creating an environment where patients feel more comfortable with disclosing detailed information about their health status (3, 4). This is important because although healthcare providers have tools to objectively measure the state of medical conditions, there are some subjective measures that can only be assessed by the patient.
In pediatric rheumatology, two commonly used PROMs are the Childhood Health Assessment Questionnaire (CHAQ) and the Quality of My Life (QoML) (5). These PROMs can be completed by the patient or using a caregiver as a proxy (6, 7).
The CHAQ assesses outcome dimensions of disability, and pain and discomfort (8). It is a widely-used and well-validated measure that has been translated into numerous languages (9–12). The CHAQ assesses physical function by asking a series of questions on a scale of 0 (no difficulty) to 3 (unable to do) about patients’ ability to perform activities of daily living (ADL) including dressing and grooming, arising, eating, walking, hygiene, reaching, gripping and activities (13, 14).
The QoML questionnaire is a validated tool which assesses the patient’s quality of life (overall and health-related) (7, 15, 16). Patients are asked to indicate on a 10-cm horizontal-anchored visual analog scale (VAS) (where 0 = worst and 100 = best): 1) their overall quality of life and 2) their health-related quality of life (16).
All patients/caregivers attending the rheumatology clinic at The Hospital for Sick Children (SickKids) complete a standardized four-page paper form containing the original version of the CHAQ (which contains the additional VAS question “how would you rate your child’s illness in the past week”) and QoML questionnaires at each of their visits. This has been the standard practice in the clinic for about 25 years. There are, however, numerous problems associated with paper versions of PROMs which have also been observed by others. Common issues include illegible demarcations and incomplete questionnaires, making it difficult for healthcare professionals and researchers to accurately use data (17). Additionally, paper forms need manual scoring, making errors in scoring and data entry possible (18).
Today’s increasingly technological world provides the opportunity to electronically collect PROMs using tablets and smartphones, offering a replacement to the traditional use of paper. The implementation of electronic versions of PROMs can improve data collection, processing and management. Electronic PROMs can help to ensure questions are correctly answered as they do not allow for respondents to create their own answer option and do not allow for interpretation of ambiguous responses (19–21). Completeness of PROMs may be better in electronic as opposed to paper formats as limits can be placed on data fields, whereby respondents cannot advance to the next question or complete the questionnaire without properly answering all fields (21, 22). Electronic information technology has been found to reduce the number of data entry errors (20, 23, 24). Accuracy and efficiency of data collection are also observed as data is automatically calculated, validated, and often transferred to a centralized database so that end users can receive immediate access to the data (19, 25). Healthcare providers may also observe trends of data over time (26). A systematic review by Rutherford et al. found that using different modes of administration (including paper versus electronic) did not result in any biases within the patient reported outcome results (23).
Research has shown there is preference towards electronic data capture over paper by healthcare teams due to the improved quality of data capture as well as increased ease of data collection and use (26). In addition, analysis has shown reductions in cost with the introduction of electronic medical records (27). Other potential areas of improvement include increased ease of use and decreased time of completion for the patient and/or healthcare team, improvements in patient satisfaction, improved completion rates and reduced physical storage requirements (22, 25, 28). E-forms can be integrated to assist with pre-visit planning for upcoming clinic visits or facilitate virtual/telemedicine visits (22).
Although previous research indicates that data collected from electronic PROMs are equivalent to their paper form, no research has been conducted using the CHAQ and QoML (29–31). There have been other studies conducted comparing pediatric electronic PROMs to paper PROMs (such as the PedsQL and the PROMIS pediatric measures) but none with the CHAQ and QoML (32, 33). In addition, it is unclear if the results from Rutherford et al.’s systematic review are transferable to the pediatric rheumatology patient population.
The purpose of this project was to a) assess whether the implementation of an electronic version of the standardized CHAQ and QoML results in equivalent responses to the paper version; b) identify potential benefits and barriers associated with electronically capturing PROMs; and c) gather feedback from patients’ and their caregivers’ regarding their acceptance electronic PROMs, their opinions of integrating its use into regular practice and, as well, gather feedback about their user experience.