Assessment of Fatigue in Rheumatoid Arthritis and Systemic Lupus

Introduction:

Fatigue is a universal symptom and in systemic rheumatic conditions such as rheumatoid arthritis and systemic lupus it is a major source of disability intruding on every aspect of a person's life. To improve its management and treatment, measurement tools that capture the person's experience are needed. This study seeks to improve researchers and clinicians' understanding of how fatigue impacts people with rheumatoid arthritis and systemic lupus. While numerous questionnaires designed to assess fatigue exist, little is known about what variations in fatigue questionnaire scores mean to people with arthritis. We are testing 6 measures of fatigue and are trying to find the changes on these measures that would make a difference to patients.

Project Methodology:

Participants are asked to attend a 3-hour meeting with 6 to 8 others with either rheumatoid arthritis or systemic lupus. The participants are asked to complete the 6 fatigue questionnaires that have been selected for the study. Then, the participants talk about their fatigue (its severity and how it affects their own life) with each of the other participants (15 minutes). At the end of the conversation, each participant compares his/her own fatigue to the fatigue of his/her conversational partner on a single question (a single choice among 7 possible answers, ranging from much more fatigue to much less fatigue). Each participant is asked to participate in 5 one-on-one interviews. The analysis will correlate the scores of the fatigue questionnaire and the comparative assessment of fatigue obtained during the one-on-one interviews.

Participant Recruitment:

The study is now closed. Within 3 months, 61 participants with rheumatoid arthritis and 69 with systemic lupus participated. The participants were recruited by a single mailing to people with rheumatoid arthritis or systemic lupus followed at the Mary Pack Arthritis Centre. Aside from having rheumatoid arthritis or systemic lupus, there were no additional inclusion criteria.

Relevance For People With Arthritis:

A standardized assessment of fatigue will help clinicians pay more attention to the fatigue of persons living with arthritis. The selected questionnaire(s) could be used in clinical practice and in treatment interventions directed at decreasing fatigue and increasing energy.

Results:

The preliminary analyses indicate the 6 instruments studied are comparable and measure fatigue that would make a difference from a patient's perspective, both in rheumatoid arthritis and systemic lupus. Further analyses will try to identify the instrument that is the most efficient.

Consumer Involvement:

Six members of the Consumer Advisory Board (CAB) of the Arthritis Research Centre of Canada met with the researchers as a precursor to this study. CAB members provided the researchers with a greater insight into the meaning of fatigue for people with arthritis. Two members of the CAB participated in this study and their feed-back helped to improve the one-on-one interviews. Specifically, probe questions were created and provided to the participants to help them to focus their discussions on fatigue.

Time Frame:

The study started in April, 2004 and was completed at the end of July, 2004.

Funding Agency:

None.

Project Team Members:

Principal Investigator

Jacques Pouchot  MD
Visiting Scholar, ARC

Co-Investigators

Raheem Kherani  MD
Rheumatology Fellow, UBC

Matt Liang  MD
Visiting Scholar, ARC

Diane Lacaille  MD, MHSc
Research Scientist, ARC

Jacek Kopec  MD, PhD
Research Scientist, ARC

Stephanie Ensworth  MD

Allen Lehman  MA, PhD
Research Associate, ARC

Marja Kauppi
Consumer Advisory Board, ARC

Otto Kamensek
Consumer Advisory Board, ARC

Consumer Advisory Board Members, ARC