The NQF recommends that consideration be given to individual patient needs, insurance factors, clinical setting constraints, and available resources when selecting PROMs.124 To maximize response rate, PROMs that are sensitive, reliable, valid, and developed in a comparative demographic of patients are advised.125 ISOQOL has released a User’s Guide and several companion guides on implementing and utilizing PROMs.108,126,127 Finally, PRO-Performance Measures (PRO-PMs) are sometimes used to assess whether PROMs are appropriately contributing to performance improvement and accountability.124
The Cons of PROs
Time and Software Constraints
PROs can disrupt busy clinical care environments and overextend clinical staff.125 Online collection of PROs outside of clinical encounters can relieve PRO-related burden, but this requires finding and funding appropriate secure online networks to effectively collect PROs.128 In 2015, only 60% of people seen for primary care visits could access or view their records online, and of those, only 57% used messaging for medical questions or concerns.129 Ideally, online patient portal or mobile health apps could synchronize directly to electronic health records or virtual scribes to transfer patient communications into clinical documentation.130 There has been limited success with this approach in European countries131 and with some chronic illness conditions in the United States.74
Electronic health technologies, including mobile health (mHealth) solutions, have improved the self-monitoring and self-management capability of patients with MS via information sharing in patient networks, assistive technologies, smartphone applications, and wearable devices.132,133 A recent study found that communication modes included secure online patient portal use (29%) and email use (21%), and among those who owned tablets or smartphones, 46% used mHealth apps.134 Social media use has been associated with increased peer/social/emotional support and increased access to health information, as well as clinical monitoring and behavior change.134,135 Individuals using mHealth apps are younger, have comorbidities, and have higher socioeconomic and education levels,135,136 suggesting that inequities in mHealth access exist.
Burden on People with MS
Questionnaires can be time-consuming and cause mental distress if not appropriately facilitated.137 Decreasing questionnaire length and providing the option for PROMs to be delivered and completed online or outside of the clinic context can reduce burden.138 Additionally, while some people are consistent in sharing their PROs, others struggle with using computers, especially while experiencing severe symptoms, forget to complete PROMs, or simply do not have internet access due to financial or geographic constraints.139 A group of disabled and elderly persons with MS reported barriers to internet use due to visual deficits, small website font sizes, and distracting color schemes.140
Interpreting PROMs and displays of longitudinal PROM data can be a challenge for persons with MS and their clinicians. There is little standardization in how PROMs are scored and presented, and there is often confusion about thresholds for clinical significance and how PROM scores can be compared to other PROMs.141,142 While guidelines exist for implementing PRO scores in clinical settings,126,143 there are few that aid PROM interpretation. As a result, clinicians often seek research evidence for PROMs used in other similar patient populations as a benchmark,142-144 or compare them to other patients seen in their clinical practice.