October 5, 2019 @ 8:11 AM

The Parkinson’s Disease Questionnaire (PDQ-39) was developed in the 1990’s by a group of researchers the University of Oxford and the Radcliffe Infirmary, Oxford.  The PDQ-39 represents one of the first measures of the impact of Parkinson’s on the patient, to be filled out by the individual patient. It is therefore a self-report measure demonstrating how the individual with Parkinson’s perceives their symptoms and the effect of these symptoms on their quality of life.1,2 

 

The PDQ-39 asks 39 questions broken down into 8 measures of quality of life – mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, and bodily discomfort. By design, the respondent rates the impact of their Parkinson’s symptoms on the subjects of the 39 questions using a scale ranging from never to always.  The BwP Project has found that the questions, while designed to measure Parkinson’s impact on the patient, actually measure how the patient perceives their quality of life as impacted by their age, health issues such as diabetes, hip replacements or heart issues, as well as Parkinson’s.  When the PDQ asks about being able to walk half a mile, it might be that a boxer's knee pain limits them and their Parkinson’s is a non-issue. 

 

In our research we can find no reference for or statements requiring permission to use the PDQ-39.  It is a generally accepted and widely used tool in the industry and in research.  Versions of the test we found carry no credits or copywrite. 

 

 

The Fullerton Advanced Balance Scale (FAB) was developed in the mid 2000’s by a group of researchers at California State University, Fullerton, Center for Successful Aging.  The FAB is used to measure balance and mobility issues among persons suffering from a variety of diseases including Fibromyalgia, traumatic brain injury (TBI), Post-chemotherapy, and most importantly for our purposes, Parkinson’s Disease. The FAB uses performance on 10 activities, assessed on a scale of 0-4 (cannot or will not perform to performs at a high level).3,4

 

In our research we can find no reference for or statements requiring permission to use the Fullerton Advanced Balance scale.  It is a generally accepted and widely used tool in the industry for individual patient analysis and for research.  Versions of the test we found carry the Cal State Fullerton name or logo but no copywrite.  We contacted Cal State Fullerton by email and received a response  as follows:  "The Fullerton Advanced Balance Scale is free to use because it is a published scale.".

 

 

Boxers involved in Boxers with Parkinson’s Project exercise programs, specifically through the Rock Steady Boxing programs, are given the PDQ-39 and the FAB at the time of their initial intake and on a periodic basis to measure their progression. Independent programs who become BwP members are expected to adopt the PDQ-39 and FAB in order to participate in the BwP Project and to use the BwP app. 

 

When the PDQ-39 quality of life survey is combined with physical assessments (FAB, TUG, S2S)  a relationship can also be studied between patient reported outcomes, PRO, and actual ability through Coach Administered Tests (CAT).  For the boxers in the Boxers with Parkinson’s Project, the combination of these assessments allows the boxer and their coaches to better tailor their boxing exercise to areas of need. This helps ensure the boxer gets the most out of their efforts as they strive to maintain and/or improve their quality of life.

 

1. Jenkinson C, Peto V, Fitzpatrick R, Grcenhall R, Hyman N. Self-reported functioning and well-being in patients with Parkinson's disease. Comparison of the Short Form Health Survey (SF-36) and Parkinson Disease Questionnaire (PDQ-39). Age Ageing 1995; 24: 505-9.

2. Peto V, Jenkinson C, Fitzpatrick R, Greenhall R. The development of a short measure of functioning and well-being for individuals with Parkinson's disease. Quality life Res 1995; 4: 241-8.

3. Rose DJ, Lucchese M, Wiersma L. Development of a multidimensional balance scale for use

 with functionally independent older adults. Arch Phys Med Rehabil. 2006; 87:1478-85

 

4. Fullerton Advanced Balance (FAB) Scale. Available at:  https://www.physio-pedia.com/Fullerton_Advanced_Balance_(FAB)_Scale#cite_note-1