Abstract

BackgroundPatient reported outcome measures (PROMs) provide valuable insight on patients’ well-being and facilitates communication between healthcare providers and their patients. The increased integration of the technology within the healthcare setting presents the opportunity to collect PROMs electronically, rather than on paper. The Childhood Health Assessment Questionnaire (CHAQ) and Quality of My Life (QoML) are common PROMs collected from pediatric rheumatology patients. The objectives of this study are to (a) determine the equivalence of the paper and electronic forms (e-form) of CHAQ and QoML questionnaires; (b) identify potential benefits and barriers associated with using an e-form to capture PROMs; and (c) gather feedback on user experience.MethodsParticipants completed both a paper and an e-form of the questionnaires in a randomized order, following which they completed a feedback survey. Agreement of the scores between the forms were statistically analyzed using the intraclass correlation coefficient (ICC) (95 % Confidence Interval (CI)) and bias was assessed using a Bland-Altman plot. Completion and processing times of the forms were compared using mean and median measures. Quantitative analysis was performed to assess user experience ratings, while comments were qualitatively analyzed to identify important themes.Results196 patients participated in this project. Scores on the forms had high ICC agreement > 0.9. New patients took longer than returning patients to complete the forms. Overall, the e-form was completed and processed in a shorter amount of time than the paper form. 83 % of survey respondents indicated that they either preferred the e-form or had no preference. Approximately 10 % of respondents suggested improvements to improve the user interface.ConclusionsE-forms collect comparable information in an efficient manner to paper forms. Given that patients and caregivers indicated they preferred completing PROMs in this manner, we will implement their suggested changes and incorporate e-forms as standard practice for PROMs collection in our pediatric rheumatology clinic.

Highlights

  • Patient reported outcome measures (PROMs) provide valuable insight on patients’ well-being and facilitates communication between healthcare providers and their patients

  • Sample The Childhood Health Assessment Questionnaire (CHAQ) and Quality of My Life (QoML) PROMs are normally distributed in our general clinics, juvenile dermatomyositis (JDM), systemic arthritis and autoinflammatory subspecialty clinics

  • Patients seen in our systemic lupus erythematosus (SLE), neonatal lupus erythematosus (NLE), Kawasaki disease, and vasculitis clinics were not included in this study

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Summary

Introduction

Patient reported outcome measures (PROMs) provide valuable insight on patients’ well-being and facilitates communication between healthcare providers and their patients. 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 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. These PROMs can be completed by the patient or using a caregiver as a proxy [6, 7]

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