Youths with physical disabilities often experience pain (Ehde et al., 2009). This pain can cause considerable disruption in their daily activities such as sleep, appetite, family functions, and peer relationships (Oddson et al., 2006). Clinically managing this pain requires regular surveillance, often based on patient self-reports.
Patient-reported outcomes (PROs) are frequently used to self-report factors associated with health, such as pain. PROs are validated instruments used to assess symptom severity and functional impairment (McDowell, 2006). They are conventionally administered through paper-and-pencil methods, either through postal surveys or at the point-of-care (Fayers et al, 2007). However, this mode of administration has multiple limitations (Kalnins et al., 1999).
One limitation of administering PROs using a paper-and-pencil approach is that they tend to provide a cross-sectional perspective of a youth’s health. This perspective provides a limited snapshot of a youth’s pain without any context, and fails to provide a “prospective longitudinal assessment in children’s every day environments” (Stinson, 2009). This can lead to an inaccurate assessment of a youth’s pain and inappropriate pain management. Without a longitudinal assessment, changes in the pain experienced by youths cannot be accurately assessed.
Another limitation of the paper-and-pencil approach is that the questions and response formats are static. This results in a one-size-fits-all approach to assessing pain. Youths, particularly those with physical disabilities, may differ in their abilities to communicate about their health and well-being. Additionally, many PROs designed for use with youths include only one dimension of pain (Wu et al., 2014). Consequently, they elicit a static single index of perceived pain intensity.
A properly designed mHealth solution can overcome these limitations. mHealth technologies use mobile devices to collect and communicate health information and allow relevant data to be gathered continually and longitudinally. The real-time nature of its data collection minimizes measurement issues associated with responder recall and enhances ecological validity, (Nilsen et al., 2012). With real-time data collection, clinicians and parents can get a more accurate pain assessment. mHealth applications can gather longitudinal data and obtain a better depiction of youths’ pain over time, seeing long term improvements or declines (Stinson, 2009).
The advancement of pain-related PROs for youths with disabilities lies in mHealth due to a significant increase in the flexibility of assessments which will lead to more regular, tailored and accurate assessments. The end result of this being better pain management and a higher quality of life for these youths.
Mateo Nicholson, B.S. is a research assistant in the Department of Pediatrics at the Medical College of Wisconsin.