So you are ready to start collecting PRO data… now you’ve got to make some key decisions- what PRO tools to use and at when to administer them.
There are hundreds out there, and the selection process can be overwhelming. This is PRO Tools 101- here are several key things to consider when selecting which PRO tool to use:
General Health vs Disease-Specific
There are 2 main ‘types’ of PRO tools: general health and disease-specific. General health PROs can be used in all types of patients, and assess both physical and emotional function. The most widely used general health PRO tools are the SF-36 and EQ-5D. Disease-specific PROs are validated in a specific patient population, such as disease type, condition, and body part. Some examples of these would be the Hip Disability and Osteoarthritis Outcome Score (HOOS) and the Neck Disability Index (NDI) surveys.
The ‘best practice’ is to use both a general health PRO and a disease-specific PRO as part of an outcome program. Together, they paint a great picture of how a procedure/intervention has impacted both a patient’s physical function and overall quality of life. And if you plan on using the data for research purposes, having both a general health PRO and disease-specific PRO is a must.
Here’s where things get a little messy…. Each PRO tool has a unique scoring system. The annoying part is that some are like golf, where a lower score is the most desirable, and others like basketball — the higher the better! Often times, the scoring algorithm is quite complex and requires some math — so make sure that you understand how the scoring system works, and make sure you set aside the time to actually compute it. Another thing to look out for is if an additional piece of information/data outside of the PRO tool is needed to calculate the score. For example, the CCI requires a serum albumin. This is not true of every PRO tool’s scoring system, but it is better to find out before you start using it.
When choosing from the vast array of PRO tools, carefully consider the patient population from which you intend to collect data, and do your homework before making a decision. This is especially important when it comes to disease-specific PRO tools — there are PROs designed specifically for active, athletic patients, and others created for an older, more sedentary population. For example, if you ask 80-year-olds with severe knee arthritis how much pain they have when running sprints, they just aren’t going to know how to answer a question like that. Once your team finds the PRO Tools that work best of the patient population you want to measure, standardize it! It is much easier to build a meaningful set of data that you can actual use when everyone is using the same tool. Sometimes it can be challenging to get all the providers to agree on the same tool, but trust me, it is worth taking the time to get everyone on the same page.
Standardizing the administration intervals for each patient population is a wise idea. Regardless of the patient population, there are two administration intervals that are a must:
- Pre-Intervention: Always have the patients complete their PROs prior to their intervention/surgery to produce a ‘baseline’.
- Annually: One-year post-intervention, regardless of what the intervention was, is globally accepted; and two-year follow-up data is required to publish in most medical journals.
Beyond those two ‘must-haves’, there is a lot of valuable information to be had from collecting PRO data between the pre-op and one-year mark — the key is making sure that there is enough of a change between each time period to make it worthwhile. Meaningful intervals are different for each patient population — CODE Technology can help you make the right decision.