Validating FL Symptoms

Interesting study last month from the Journal of Patient-Reported Outcomes.

Before I get into it, let me say how great it is that there is a medical journal called The Journal of Patient-Reported Outcomes. It's an official publication of the International Society for Quality of Life Research, which encourages research into Quality of Life with regard to health and medicine. They say this kind of research is important because it ill help us "Understand the potential benefits and risks of a proposed treatment;Weigh the impact of a decision on symptoms, function and life expectancy;Live their lives more fully." 

As you can see, all of this ties into all of the survivorship issues I've been thinking about so much lately. It's not enough to have a treatment that is effective, or even that is both effective and safe. There needs to be some idea of how the treatment, and the act of being given a treatment, and of receiving a cancer diagnosis in the first place, all affect our ability to live a happy life. 

Back to the article in the JPRO. It's called "Content validation of the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Lymphoma Symptom Index-18 (NFLymSI-18) in indolent B-cell non-Hodgkin’s lymphoma."

It's a long title for a fairly simple idea -- are the physical and emotional symptoms that we think affect patients with indolent lymphomas actually the symptoms that affect them? 

You'd think that it would be obvious -- anytime we look up Follicular Lymphoma online, we get a list of symptoms -- swollen lymph nodes, fatigue, etc. But there are a couple of potential issues with whether or not that is accurate. The first is that the disease presents itself so differently for each of us. Some of us are diagnosed because the FL is causing big problems. But others of us are diagnosed with few or even no symptoms at all, or are diagnosed accidentally. It's a strange disease that way.

But the other issue is that sometimes a diagnostic tool can get in the way of the thing its trying to diagnose. I'm sure many of you have had this experience - you go to WebMD or some other site online that lets you enter your symptoms and then provides you with a range of possible diagnoses. In the end, they aren't helpful, because the at best, the tool presents too many possible options. At worst, the tool wasn't built well, and it doesn't accurately account for the variety of symptoms for a disease (you put in swollen lymph nodes but not fatigue, so it doesn't list FL as one of the choices). This is a doctor's nightmare, and why they don't like us going to "Dr. Google." (I hate that phrase -- it's used by some doctors to completely discount a patient's needs and experiences.)

There is a tool that can be used to measure symptoms called the National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy Lymphoma Symptom Index-18 (NFLymSI-18). You can actually download a copy if you want to see it. The number 18 in the name comes from the 18 items that are on the list. It's a self-administered list of symptoms with a lickert scale (meaning you are asked whether or not you have experienced a symptom within the previous seven days on a scale from "not at all" to "very much." The survey begins with the statement "Below is a list of statements that other people with your illness have said are important."

The survey has been around for about 8 years, and has been used in clinical trials. But it hasn't been tested content validity specifically for people with indolent NHL (which can be a very different thing from ore aggressive types of lymphoma).

For the study, the survey was given to 18 patients with indolent lymphoma from a single cancer center. Of the 18 patients, 12 had been diagnosed with FL, 5 with Marginal Zone Lymphoma, and 1 with  lymphoplasmacytoid lymphoma/Waldenström macroglobulinemia. They were given the survey, and then followed up with "cognitive debriefing," where they were interviewed in greater depth about their symptoms.

The results found that the NFLymSI-18 survey was accurate, and did indeed capture the symptoms that patients with indolent lymphomas experience. 

There were limitations to the study -- it was very small, the patients were all similar in race and educational background, and they all came from one single cancer center. So it's hard to say this is an accurate instrument for all indolent lymphoma patients. But it does provide a good start for a larger study.

More importantly, I think, it that it validates the importance of asking patients what they experiencing. The survey was initially created with input from patients, which is great. But continuous input is even better. It's good for all of us to have a sense that what we experience is common among other patients with out disease.

At the same time, it's also important to remember that the disease really does affect each of us differently. Not just in the way our symptoms present. But also in the way those symptoms affect us emotionally. The survey asks we have "emotional ups and downs" and if we "feel uncertain about our future health" -- excellent things to ask about. But it also doesn't ask things like "I worry about my family" and "I worry about how I'm going to pay for all of this treatment" or even "I worry about whether my friend will be able to pick me up after my appointment." That's probably all included in a general statement, but no survey will even really capture everything we feel.

And I think it's worth remembering that even those small worries that only we are experiencing individually are still "valid content." It's OK to feel how you feel, even if someone else isn't also feeling it.

There's no one way to be a cancer patient. Don't let anyone tell you different.