Why We Should Not Limit Our Patients with Their Survey Responses AND also Be Nice to Our Wives – A Researcher’s Point of View

I am the director of research at an orthopedic spine clinic. Part of my research involves collecting clinical outcome data on patients before and after their treatment. We are collecting responses on several questionnaires, like the Visual Analog Scale, Oswestry Disability Index, Neck Pain Disability Index, Demoralisation Scale and more. I would like to focus on a humorous scenario that I had with the Oswestry Disability Index in my clinic last week.

The Oswestry Disability Index (ODI) is an index derived from the Oswestry Low Back Pain Questionnaire used by clinicians and researchers to quantify extent of disability for people experiencing lower back pain. The Oswestry Disability Index is currently considered by many as the gold standard for measuring the degree of disability and estimating quality of life in a person with lower back pain. The self-completed questionnaire contains ten items concerning intensity of pain, lifting, ability to care for oneself, ability to walk, ability to sit, sexual function, ability to stand, social life, sleep quality, and ability to travel. Each topic category is followed by 6 statements describing different potential scenarios in the patient's life relating to each item. The patient then checks the statement which most closely resembles their situation. Each question is scored on a scale of 0–5, with the first statement being zero and indicating the least amount of disability and the last statement scored 5 indicating most severe disability. The scores for all item responses are summed, then multiplied by two to obtain the index (range 0 to 100). Zero is equated with no disability and 100 is the maximum disability possible.

Last week I had a nice patient in his mid-40s coming to laboratory for testing. The guy was being assessed one week before undergoing neck surgery. His ODI score was 50. Although the guy was in a severe pain and nervous due to the upcoming surgery, he had the ability to be creative in his response. In the ODI question that refers to the impact of pain on sexual experience, this patient added his own unique response option.

Section 8 – Sex life (if applicable)

(0)   My sex life is normal and causes no extra pain.

(1)   My sex life is normal but causes some extra pain.

(2)   My sex life is nearly normal but is very painful.

(3)   My sex life is severely restricted by pain.

(4)   My sex life is nearly absent because of pain.

(5)   Pain prevents any sex life at all.

(6)   Sex life is restricted because of mean wife

I am not sure how he is dealing with his pathology and pain, but apparently his wife is not helping him much (Or this is the pain that made feel a certain reaction toward his wife).

Although the ODI is the gold standard for measuring degree of disability, should we limit our patients’s responses, should we limit them on how to express their experiences with pain? Everybody is different, everyone deals with pain in different ways. Similar to love, pain is a subjective feeling and is experienced and expressed differently. Similar pathology may respond differently to the same type of treatment. I agree that standard clinical outcome questionnaires (i.e. ODI, VAS etc.) are cheaper tool to evaluate pain and easier to grade and analyze when you try to reach general conclusions. But should we keep generalizing our patients’ unique experiences of pain? Should we limit their expressions of pain? If so, why are we not also aiming to frame their expressions of love? Why we are keep trying to simplify our patients’ feelings or emotions? Should we use single-patients analysis, or give patients the ability to express themselves in more qualitative ways, like open-ended textbox responses? There are no rights or wrong answers, just a point to be raised on a patient’s personal experience.