1. Appraisal and Management of Fatigue Among Older HIV+ Adults Courtney J. Brown-Bradley, MPH, Karolynn Siegel, PhD, and Helen-Maria Lekas, PhD Center for the Psychosocial Study of Health and Illness Mailman School of Public Health Columbia University

2. Symptoms and Illness Behaviors of HIV-Infected Adults NIA funded study (R01 AG16571) Principal Investigator: Karolynn Siegel, Ph.D. In-depth interviews with 100 HIV+ adults (50+) in New York City area Each participant discussed 3 symptoms 49 participants discussed fatigue

3. Symptoms and Illness Behaviors of HIV-Infected Adults Objectives To investigate the symptom appraisal process for common disease and treatment-related symptoms (i.e. the assigning of cause and significance to symptoms) among HIV-infected adults To investigate HIV-infected adults’ coping responses to common disease and treatment-related symptoms To investigate how symptoms influence HIV-infected adults’ treatment acceptance and adherence behaviors

4. Symptoms and Illness Behaviors of HIV-Infected Adults Data were collected between November 2000 and February 2002 Symptom experiences were gathered using nondirective focused interviewing techniques Text coded using content/thematic analysis Atlas.ti used to facilitate analysis

5. Symptom Interpretation A search for meaning Assignment of cause to the symptom Evaluation of its personal significance Influenced by a variety of factors Motivation to attribute to non-threatening causes Attribution influences coping responses

6. Fatigue in HIV Highly prevalent symptom among HIV+ persons (37-98%) Often diminishes physical and mental functioning, psychological well-being, & overall quality-of-life Has many potential causes, including immunosuppression, anemia, depression, medications, OIs, & hormonal dysfunction

7. Fatigue in HIV Prior research has focused primarily on clinical management of fatigue - the identification, prevention and/or treatment of underlying causes Far less research has focused on the personal experience of fatigue or self-initiated strategies for managing it (see Corless, 2002; Barosso, 2001; Rose, Pugh, Lears & Gordon, 1998)

8. Fatigue Sample: Demographics 67% male; 33% female Blacks, Hispanics, & Whites each made up 33% of sample; one case classified as “other” Age: Mean = 55.7; Range = 50-71 82% was 50-58 years of age Time since diagnosis: Mean = 8 years and 8 months; Range = 22-198 months Ever had T-cell count <200: 67% History IVDU: 40%; Current IVDU: 4%

9. Fatigue Sample: Demographics Education: 25% < HS; 16% HS grad; 25% some college; 35% grad of 4-year college or more Annual Income: 55% $35,000 Sexual orientation: 44% completely heterosexual, 35% completely homosexual Marital status: 4% common law marriage; 27% separated/divorced; 14% widowed; 55% single never married. Partner status/ living situation: 31% had steady partner; 67% lived alone Children: 53% had children; 14% had children living in their home

10. Causal Attributions for Fatigue Fatigue (included tiredness, fatigue & lack of energy) Nearly all had multiple attributions and had difficulty isolating causes. Contributing factors were assumed to operate simultaneously HIV was most common attribution; fatigue is “part of the virus” Consistent with participants’ illness representation for HIV/AIDS

11. Attributions to HIV HIV as “master attribution” - any new symptom attributed to HIV Many bodily changes since HIV diagnosis Fatigue - indicator of disease progression Reliance on contextual information - occurrence alongside other clinical changes or HIV symptoms Use of social comparison or information from peers Some experienced uncertainty over age or AIDS as cause of fatigue

12. Attributions to other causes Frequently occurred in conjunction with HIV attribution Toxic side-effects of medications Medication attribution more common among males who were also more likely to be on HIV medication Comorbidities – rival HIV as explanations for fatigue

13. Attributions to other causes Overexertion, stress, diet or lack of vitamins, lack of rest, sleeping problems, weather, or drug withdrawal also mentioned Depression less frequently reported as presumed cause than expected

14. Sources of information in appraisal of fatigue Most discussed possible causes with HCP (e.g. doctor, nurse, dietician) Over half discussed it with lay people (e.g. family, friends, support group members) HIV most common cause suggested by others Overlap between causes HCPs and lay people offered, and those participants believed to be the cause Participants offered more causes than suggested by others

15. Coping with Fatigue Nearly all utilized self-care or sought traditional medical care Most used both approaches Several initially took a “wait and see” approach Most participants tried to manage fatigue on their own before seeking medical care

16. Coping with Fatigue: Self-Care Frequently used general health improvement approaches reflects the notion that fatigue or vigor is an indicator of overall health status used alternative and traditional therapies to boost immune system Addressed other perceived underlying causes improved diet or took vitamins exercised to avoid lethargy from inactivity rested to avoid exhaustion from overexertion

17. Coping with Fatigue: Self-Care Tried to minimize or eliminate factors that exacerbated fatigue stopped or cut back on smoking tried to manage stress level strategically scheduled activities to avoid peak fatigue times paced activity/exertion level Received suggestions from family, friends, support group members

18. Coping with Fatigue: Health Care Seeking Generally discussed it during routine visit Most providers offered suggestions for managing fatigue Providers often tested for underlying causes (e.g. anemia, testosterone deficiency) and suggested interventions to address those causes Providers also recommended lifestyle changes (e.g. dietary changes, exercise balanced with rest, smoking cessation, vitamins and supplements) Reasons for not seeking care: not serious enough problem given time constraints of visits; provider cannot doing anything about fatigue

19. Coping with Fatigue: Complementary & Alternative Medicine (CAM) Nearly half of the sample tried CAM to manage fatigue Always used in conjunction with “more traditional” self- care or medical care Physicians sometimes recommended initiating or continuing CAM to alleviate fatigue Common strategies included herbs and minerals, special juices, acupuncture, meditation, & massage

20. Fatigue in HIV: Appraisal & Management Conclusion: Fatigue was a part of participants’ illness representation of HIV disease Nearly all attributed fatigue in part to HIV, but typically to other causes as well Given the number of credible explanations for fatigue, it may be a symptom that lends itself to ambiguity re cause Most had been HIV+ for years – may have been difficult to deny fatigue was HIV-related

21. Fatigue in HIV: Appraisal & Management Conclusion (cont’d): Nearly all tried multiple strategies to alleviate their fatigue Most tried suggestions offered by HCPs Some may avoid or delay seeking care for fatigue – seen as inevitable or lower priority HCPs can assist PLWHA by routinely asking them about their energy levels -Assist in early identification of potentially treatable causes -Aid in management of fatigue and accommodation of routine