Appraisal and Management of Fatigue Among Older HIV+ Adults

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% < $10,000; 29% - $10 – 19,999; 6% - $20 – 34,000; 10% > $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