Gauge Lupus Disease Burden by Assessing Participation in a Broad Range of Activities

LONDON — Incorporating a broader range of activities into lupus disability assessments would provide a more accurate measurement of the disease burden and could help identify patients at risk for depression, Patricia Katz, Ph.D., said at the Sixth European Lupus Meeting.

Disability has traditionally been measured by assessing difficulty in managing activities associated with self-care, independent living, and productive roles such as work. But studies of patients with other chronic conditions such as rheumatoid arthritis have shown that other activities associated with quality of life also can have significant impact.

“We have tried to expand the assessment of disability by incorporating a wide range of activities and also by incorporating the concept of personal value. The reason for including this concept is that certain activities may be more meaningful to some patients than to others, and the meaning or value attached to those activities is likely to affect the impact of the disability,” said Dr. Katz of University of California, San Francisco.

These Valued Life Activities (VLA) and their relationship to overall disability and depression were evaluated in a group of 912 adults with systemic lupus erythematosus.

Activities were subdivided into three groups: obligatory, committed, and discretionary.

Obligatory activities were those necessary for survival and self-sufficiency, including personal care, sleeping, walking, and using local transportation.

Committed activities were those associated with principal productive roles and household management, such as paid work, housework, food preparation, household repairs, yard maintenance, shopping and errands, and child or elder care.

Discretionary activities were pursuits, including socializing with friends and relatives; entertainment away from home; hobbies and other leisure activities; sports and physical recreation; public service; and religious, club, and education activities.

Patients were asked to rate the amount of difficulty they experienced in each of these activities, and their disability was rated on a scale of 0 (none) to 3 (unable).

Mean difficulty ratings were calculated separately for all items and then by activity group. Depression was defined as a score of 16 or greater on the Center for Epidemiologic Studies Depression (CES-D) scale.

Multiple regression analysis was used to test whether VLA disability was associated with depression, and analyses controlled for demographic characteristics, symptoms, and other health conditions.

Overall, patients were unable to perform an average of 1.6 VLA activities because of their lupus, and the overall difficulty rating was 0.81, Dr. Katz said at the meeting, sponsored by the British Society for Rheumatology.

Difficulty ratings were lower for obligatory activities (0.56) than for committed activities (0.87) or discretionary activities (0.81). Patients were unable to perform more discretionary activities (8.3%) than committed activities (6.1%) or obligatory activities (1.8%).

A total of 44% of patients had CESD scores suggestive of probable depression. Each VLA a person was unable to do significantly increased the risk of depression, and a 1-point increase in the difficulty rating increased the odds of depression more than threefold, she said.

“Only disability in discretionary activities was consistently significantly associated with depression, yet these activities are rarely included in traditional disability assessments,” she said.

LONDON — Incorporating a broader range of activities into lupus disability assessments would provide a more accurate measurement of the disease burden and could help identify patients at risk for depression, Patricia Katz, Ph.D., said at the Sixth European Lupus Meeting.

Disability has traditionally been measured by assessing difficulty in managing activities associated with self-care, independent living, and productive roles such as work. But studies of patients with other chronic conditions such as rheumatoid arthritis have shown that other activities associated with quality of life also can have significant impact.

“We have tried to expand the assessment of disability by incorporating a wide range of activities and also by incorporating the concept of personal value. The reason for including this concept is that certain activities may be more meaningful to some patients than to others, and the meaning or value attached to those activities is likely to affect the impact of the disability,” said Dr. Katz of University of California, San Francisco.

These Valued Life Activities (VLA) and their relationship to overall disability and depression were evaluated in a group of 912 adults with systemic lupus erythematosus.

Activities were subdivided into three groups: obligatory, committed, and discretionary.

Obligatory activities were those necessary for survival and self-sufficiency, including personal care, sleeping, walking, and using local transportation.

Committed activities were those associated with principal productive roles and household management, such as paid work, housework, food preparation, household repairs, yard maintenance, shopping and errands, and child or elder care.

Discretionary activities were pursuits, including socializing with friends and relatives; entertainment away from home; hobbies and other leisure activities; sports and physical recreation; public service; and religious, club, and education activities.

Patients were asked to rate the amount of difficulty they experienced in each of these activities, and their disability was rated on a scale of 0 (none) to 3 (unable).

Mean difficulty ratings were calculated separately for all items and then by activity group. Depression was defined as a score of 16 or greater on the Center for Epidemiologic Studies Depression (CES-D) scale.

Multiple regression analysis was used to test whether VLA disability was associated with depression, and analyses controlled for demographic characteristics, symptoms, and other health conditions.

Overall, patients were unable to perform an average of 1.6 VLA activities because of their lupus, and the overall difficulty rating was 0.81, Dr. Katz said at the meeting, sponsored by the British Society for Rheumatology.

Difficulty ratings were lower for obligatory activities (0.56) than for committed activities (0.87) or discretionary activities (0.81). Patients were unable to perform more discretionary activities (8.3%) than committed activities (6.1%) or obligatory activities (1.8%).

A total of 44% of patients had CESD scores suggestive of probable depression. Each VLA a person was unable to do significantly increased the risk of depression, and a 1-point increase in the difficulty rating increased the odds of depression more than threefold, she said.

“Only disability in discretionary activities was consistently significantly associated with depression, yet these activities are rarely included in traditional disability assessments,” she said.

LONDON — Incorporating a broader range of activities into lupus disability assessments would provide a more accurate measurement of the disease burden and could help identify patients at risk for depression, Patricia Katz, Ph.D., said at the Sixth European Lupus Meeting.

Disability has traditionally been measured by assessing difficulty in managing activities associated with self-care, independent living, and productive roles such as work. But studies of patients with other chronic conditions such as rheumatoid arthritis have shown that other activities associated with quality of life also can have significant impact.

“We have tried to expand the assessment of disability by incorporating a wide range of activities and also by incorporating the concept of personal value. The reason for including this concept is that certain activities may be more meaningful to some patients than to others, and the meaning or value attached to those activities is likely to affect the impact of the disability,” said Dr. Katz of University of California, San Francisco.

These Valued Life Activities (VLA) and their relationship to overall disability and depression were evaluated in a group of 912 adults with systemic lupus erythematosus.

Activities were subdivided into three groups: obligatory, committed, and discretionary.

Obligatory activities were those necessary for survival and self-sufficiency, including personal care, sleeping, walking, and using local transportation.

Committed activities were those associated with principal productive roles and household management, such as paid work, housework, food preparation, household repairs, yard maintenance, shopping and errands, and child or elder care.

Discretionary activities were pursuits, including socializing with friends and relatives; entertainment away from home; hobbies and other leisure activities; sports and physical recreation; public service; and religious, club, and education activities.

Patients were asked to rate the amount of difficulty they experienced in each of these activities, and their disability was rated on a scale of 0 (none) to 3 (unable).

Mean difficulty ratings were calculated separately for all items and then by activity group. Depression was defined as a score of 16 or greater on the Center for Epidemiologic Studies Depression (CES-D) scale.

Multiple regression analysis was used to test whether VLA disability was associated with depression, and analyses controlled for demographic characteristics, symptoms, and other health conditions.

Overall, patients were unable to perform an average of 1.6 VLA activities because of their lupus, and the overall difficulty rating was 0.81, Dr. Katz said at the meeting, sponsored by the British Society for Rheumatology.

Difficulty ratings were lower for obligatory activities (0.56) than for committed activities (0.87) or discretionary activities (0.81). Patients were unable to perform more discretionary activities (8.3%) than committed activities (6.1%) or obligatory activities (1.8%).

A total of 44% of patients had CESD scores suggestive of probable depression. Each VLA a person was unable to do significantly increased the risk of depression, and a 1-point increase in the difficulty rating increased the odds of depression more than threefold, she said.

“Only disability in discretionary activities was consistently significantly associated with depression, yet these activities are rarely included in traditional disability assessments,” she said.