Abstract
Background
People living with HIV infection are confronted with physical and psychological symptoms that impact their quality of life. This study explored the symptom experience of people living with HIV infection in Puerto Rico and its correlation with quality of life.
Methods
A cross-sectional descriptive design was used to survey 44 men, women, and transgender people living with HIV infection. Measures included a demographic questionnaire, sign and symptom checklist, and a quality of life instrument.
Results
The sample was 50% male with a mean age of 42.1 years; the participants had been living with HIV infection on average for 9.8 years. The top five symptoms reported by the sample included: muscle aches (81.8%), depression (77.2%), weakness (70.5%), fear/worries (70.5), and difficulty with concentration (65.9%). Symptom frequency was significantly related to four dimensions of quality of life: overall function (r=−0.58), life satisfaction (r=−0.59), health worries (r=0.32) and HIV medication worries (r=0.59). The symptom experience was not related to financial worries, disclosure worries, or sexual functioning. Individuals who reported taking HIV medications reported significantly fewer symptoms than those not taking HIV medications (t=3.061, df=42, p<0.01).
Conclusions
These results suggest that people living with HIV infection in Puerto Rico experience a wide array of physical and psychological symptoms and that these symptoms have a correlation with their perceived quality of life. Better management of symptoms may have an impact on perceived quality of life for people living with HIV infection.
Keywords: HIV/AIDS, symptoms, quality of life, Puerto Rico
Resumen
Antecedentes
Las personas que viven con VIH confrontan síntomas físicos y psicológicos que impactan su calidad de vida. Se exploró los síntomas que experimentan las personas viviendo con VIH en Puerto Rico y su correlacion con la calidad de vida. Metodo: Se utilizó un diseño descriptivo transversal y se encuestó 44 mujeres, hombres y transgénero viviendo con VIH. Se recogieron datos demográficos, sobre signos y síntomas y la calidad de vida. Resultados: Un 50% de la muestra fueron hombres con una edad promedio de 42.1 años. Los participantes llevan en promedio 9.8 años viviendo VIH. Los cinco síntomas más reportados por la muestra incluyen dolores musculares (81.8%), depresión (77.2%), debilidad (70.5%), miedos/ preocupaciones (70.5%) y dificultad para concentrarse (65.9%.) La frecuencia de los síntomas estuvo significativamente relacionada con las cuatro dimensiones de calidad de vida, incluyendo funcionamiento general (r=−0.58), satisfacción con la vida (r=−0.59), preocupaciones con su salud (r=0.32) y preocupaciones sobre los medicamentos para tratar el VIH (r=0.59). No se encontró relación entre la experiencia de síntomas con preocupaciones financieras, preocupaciones de revelación o funcionamiento sexual. Participantes tomando medicamentos para el VIH reportaron significativamente menos síntomas que aquellos que no los toman (t=3.061, df=42, p<0.01). Conclusiones: Estos resultados demuestran que las personas viviendo con VIH en Puerto Rico experimentan una variedad de síntomas físicos y psicológicos y estos correlacionan con como perciben su calidad de vida. Un manejo adecuado de los síntomas pudiera tener un impacto en cómo las personas perciben su calidad de vida.
Introduction
The HIV/AIDS epidemic has spread widely across the globe and currently, the Caribbean has the second highest prevalence of the epidemic in the world after Sub-Saharan Africa (1). Recent figures show that 1.4 million people are living with HIV in Latin America (1). Puerto Rico has been severely affected by HIV/AIDS since the beginning of the epidemic. Out of the more than 31,586 reported cases of AIDS, 68% have died (2). Since 2003, 6,175 new cases of HIV have been identified (2). Therefore, the true impact of the HIV/AIDS epidemic has probably been underestimated. Although the availability of antiretroviral therapy (ART) medications has reduced the death rate from AIDS, the rate of HIV infection has not declined (3).
A diagnosis of HIV disease places unique burdens on every aspect of the daily life of persons afflicted with this disease. People living with HIVinfection, are confronted with physical and psychological challenges related to the disease, medication modalities, and other health conditions. The experience of HIV-related symptoms is a significant part of that challenge. Symptom experience is a dynamic process and includes the patient's perception, evaluation, and response to symptoms (4).
Although, symptom management is an essential component of HIV care it is also often a neglected one. Many symptoms experienced by patients are under-recognized and under-treated. Symptoms related to HIV disease include dyspnea, fever, fatigue, nutrition problems, anxiety, sleep disturbance, depression, and anemia (5). On the other hand, complex treatment also causes symptoms such as nausea, vomiting, pain, diarrhea, headache, neuropathy and numbness (6). Thus, constellations of HIV-related symptoms negatively affect the quality of life for people living with HIV infection. Effective management of symptoms is important for improving quality of life and potentially for maintaining a complicated daily regimen of ART (7).
The prevalence of symptoms, symptom etiology, symptom distress, and functional status has been documented in a number of studies (8-13). The distress associated with the diagnosis of HIV infection can result in anxiety about a range of issues including treatment, mortality, stigma and change in daily life as well as depression and fear (14, 15). Few studies have addressed the HIV symptom experience of Hispanic/Latino people (16) and specifically the understanding the symptom experience of people living with HIV infection has been under-explored of those infected living in Puerto Rico.
The purpose of this study was to describe self-reported symptom experience among a sample of men, women, and transgender living with HIV infection in Puerto Rico and to explore potential relationships of HIV symptoms with quality of life.
Methods
Research Questions:
Two study questions were addressed:
What is the frequency of symptoms in a sample of people living with HIV infection in Puerto Rico?
Is there a relationship between HIV symptoms and perceived quality of life?
Design
A cross-sectional descriptive design was used to gather self-reported data on the presence of symptoms in a sample of 44 participants people (22 men; 21 women; 1 transgender) living in a community housing project in Puerto Rico. Participants of this study were part of a larger international study on self-care symptom management of HIV/AIDS conducted by members of the University of California, San Francisco International HIV/AIDS Nursing Research Network. Eligibility criteria included the following: (a) male, female, or transgender 21 years of age or older, (b) HIV positive by self-report, (c) speak and understand Spanish, and (d) able to provide informed consent. The protocol was reviewed and approved by the Institutional Review Boards of the University of Puerto Rico and University of California, San Francisco. To assure confidentiality and privacy, access to the HIV positive residents of the community housing project was provided by the director of the support program. A research assistant and the investigator recruited all participants who potentially met study criteria. Participants were recruited and given a detailed overview of the study including time required for participation and potential risks and assurances of confidentiality. Informed written consent was obtained from each participant. Participants received a $20 incentive immediately following their participation in the study. Three self-reported instruments were utilized in this study including a socio-demographic questionnairie, the HIV/AIDS Targeted Quality of Life Instrument HAT-QoL, (24) and the Revised Sign and Symptom Checklist for Persons with HIV Disease (SSC-HIVrev). The instruments were translated into Spanish from the original English. The questionnaires were adjusted to the Spanish dialect spoken in Puerto Rico and then examined for content validity by a panel of experts in the field of HIV care.
Instruments
1) Socio-demographic Questionnaire
Data related to participant characteristics (age, race, gender, education, income, work status, years with HIV, CD4 count, viral load, medical conditions) and their experience with alcohol use, drugs, tobacco and violence were collected.
2) HIV/AIDS Targeted Quality of Life Instrument (HAT-QoL) (24)
This 34-item quality of life instrument is a disease-specific quality of life measure assessing nine dimensions: overall function, life satisfaction, health worries, financial worries, medication worries, HIV mastery, disclosure worries, provider trust, and sexual function. All dimensions are scored so that the final dimension score is transformed to a linear 0 to 100 scale, where 0 is the worst score possible and 100 is the best score possible. Multi-trait, multi-item assessment indicated correct correlations (> 91%) for eight of the nine dimensions. Construct validity was determined through various self-reported HIV disease markers and self-reported socio-demographic variables (17). In a multi-site, multi-country study including Puerto Rico with HIV-positive individuals (n=1217), internal consistency reliability coefficients ranged from 0.83 to 0.88 for all nine dimensions (18).
3) The Revised Sign and Symptom Checklist for Persons with HIV Disease (SSC-HIVrev)
The SSC-HIVrev has three parts: Part I consists of 45 items and eleven factor scores, along with a total score, with reliability estimates ranging from 0.76−0.91; Part II consists of 19 HIV-related symptoms that do not cluster into factor scores but may be of interest from a clinical perspective; and, Part III consists of eight items related to gynecological symptoms for women that are not reported in the other two parts. These eight items were submitted to a principal components factor analysis with Varimax rotation (n = 118 HIV-positive women) and a one-factor solution explained 71.8% of the variance. The Cronbach's alpha reliability estimate for the total scale was 0.94 (19).
Data Analysis
The data were analyzed using Statistical Package for the Social Sciences (SPSS) for Windows software version 13. The responses to the instruments were coded and descriptive statistics such as frequencies, percentages, and measures of central tendencies, and standard deviation were performed to compare the characteristics of the sample. T-tests were calculated to explore differences and r Pearson correlations were performed to analyze the associations among variables.
Results
Data were collected using a convenience sample of 44 men (n=22), women (n=21) and one transgender person (n=1) living in a community housing project located in an urban area in San Juan, Puerto Rico (Table 1). Participants ranged in age from 25 to 59 with a mean age of 42.08 years (SD= 8.89). Fifty-seven percent (57%) of the participants had grade school or high school education. Sixty-six percent (66%) of the participants reported having children while ninety-five percent (95%) of the participants relied on Medicaid or the government health care reform insurance. Only 18.2% reported currently working for pay. Income adequacy was reported between barely adequate (47.7%) or totally inadequate (31.8%) to meet their needs. At the time of the study fifty-nine percent (59%) of the sample reported currently taking HIV medications. Seventy-seven percent (77%) reported that, in addition to HIV infection, they were also dealing with other health conditions including depression (22.7%), asthma and anemia (22.7%) respectively.
Table 1.
Demographic Characteristics of Study Sample (N = 44)
| Variables | M | SD |
|---|---|---|
| Age | 42.1 | 8.9 |
| Years HIV + | 9.8 | 6.1 |
| Years on HIV Meds | 8.9 | 5.8 |
| N | % | |
| Race | ||
| African | 6 | 14% |
| American/Black | 32 | 73% |
| Hispanic/Latino | 6 | 14% |
| White/Anglo | 3 | 7% |
| Gender | ||
| Male | 22 | 50% |
| Female | 21 | 49% |
| Transgender | 1 | 1% |
| Highest Education | ||
| Grade School | 14 | 32% |
| High School | 11 | 25% |
| Tech./vocational | 9 | 21% |
| College | 8 | 18% |
| Postgraduate | 2 | 4% |
| Acquired HIV * | ||
| Sex with man | 47.7% | |
| Male | 6 | |
| Female | 15 | |
| Sex with woman | 27.2% | |
| Male | 12 | |
| Shared needles | 29.5% | |
| Male | 9 | |
| Female | 4 | |
| Blood transfusion/other | 6.8% | |
| Male | 1 | |
| Female | 2 | |
| Frequency & Percentage "Yes" | ||
| One or more children at home | 10 | 22% |
| Work for pay | 8 | 18.2% |
| Physically abused by partner | 18 | 40.9% |
| Physically hit, slapped, kicked | 29 | 65.9% |
| Forced sexual activity | 12 | 27.3% |
| AIDS diagnosis | 7 | 15.9% |
| Know most recent Viral load | 21 | 36.4% |
| Knows if Undetectable | 16 | 47.7% |
| Ever taken HIV Meds | 38 | 86.4% |
| Taking HIV Meds now | 26 | 59.1% |
| Other Medical Conditions | 34 | 77.3% |
| Asthma & Anemia | 10 | 22.7% |
| Depression |
10 |
22.7% |
| Unhealthy behaviors |
|
|
| Tobacco |
24 |
55% |
| Alcohol |
14 |
32% |
| Marijuana |
29 |
66% |
| Cocaine |
29 |
66% |
| Formerly used heroin | 19 | 45% |
Some participants answered more than one type of risk behavior
The coexistence of violence and drug use also was identified among the study sample. Forty-one percent (41%) of the sample reported having been physically abused by a partner or other person. Sixty-six percent (66%) of participants reported being hit, slapped or kicked and 27.3% of the sample reported forced sexual activity. Current tobacco use was 55%, alcohol use was 32%, and marihuana and cocaine use were reported by 66% of the respondents. Forty-five percent of the sample formerly used heroin. Twenty-two percent of the sample also reported other comorbidities including asthma, anemia and depression.
The top ten symptoms reported by the sample are presented in Table 2. The top five symptoms included: muscle aches (81.8%), depression (77.2%), weakness (70.5%), fear/worries (70.5), and difficulty with concentration (65.9%).
Table 2.
Frequencies and rank order for ten top symptoms (n = 44)
| Symptoms | n | % | Rank Order |
|---|---|---|---|
| Muscle aches | 36 | 81.8 | 1 |
| Depression | 34 | 77.3 | 2 |
| Weakness | 31 | 70.5 | 3 |
| Fear/worries | 31 | 70.5 | 4 |
| Difficult concentration | 29 | 65.9 | 5 |
| Joint pain | 29 | 65.9 | 6 |
| Memory loss | 28 | 63.6 | 7 |
| Anxiety | 28 | 63.6 | 8 |
| Fatigue | 27 | 61.4 | 9 |
| Blurred vision | 25 | 56.8 | 10 |
Overall symptom frequency was significantly related to four dimensions of quality of life, including overall function (r=−0.58), life satisfaction (r=−0.59), health worries (r=0.32) and HIV medication worries (r=0.59) (Table 3). The symptom experience was not related to financial worries, disclosure worries, or sexual functioning.
Table 3.
Descriptive statistics for symptoms and HAT Quality of Life scales (N=44)
| Scale | Mean | SD | Correlations: Symptom Frequency with QoL scores |
|---|---|---|---|
| Symptom Frequency | 43.61 | 28.86 | |
| HAT Quality of Life Scores | |||
| Overall function | 103.05 | 20.10 | −0.58** |
| Life satisfaction | 13.68 | 5.39 | −0.59** |
| Health worries | 5.00 | 4.70 | 0.32* |
| Financial worries | 5.82 | 4.22 | 0.17 |
| HIV medication concerns | 4.15 | 4.79 | 0.59** |
| Worries over being HIV positive | 2.55 | 2.98 | 0.26 |
| Disclosure worries | 4.68 | 5.64 | 0.25 |
| Feelings about your doctor | 35.40 | 5.74 | −0.07 |
| Sexual functioning | 7.09 | 1.94 | 0.01 |
p <0.05
p<0.01
Individuals who reported taking HIV medications reported significantly fewer symptoms than did those not taking HIV medications (t=3.061, df=42, p<0.01) (Table 4). There were no differences in symptom frequency between those who self-reported abuse or had other health care conditions.
Table 4.
Symptom frequency by selected demographic variables (n=44)
| Symptom Frequency | ||||||
|---|---|---|---|---|---|---|
| Variable | Yes |
No |
||||
| Mean | SD | Mean | SD | T | p | |
| Every physically abused | 23.61 | 13.114 | 23.69 | 16.79 | 0.83 | 0.99 |
| Taking ARVs now | 18.27 | 10.97 | 31.44 | 17.35 | 3.06* | 0.00 |
| Other medical conditions | 24.12 | 13.57 | 22.10 | 20.71 | 5.47 | 0.78 |
| Male | Female | |||||
| Gender | 26.59 | 17.53 | 20.52 | 12.49 | 1.45 | 0.20 |
p< 0.01
Discussion
These results provide important data on the wide variety of symptoms being experienced by people living with HIV infection in Puerto Rico and their relationship with perceived quality of life. This profile of symptoms is similar to what has been reported in the literature that includes muscle aches, depression, weakness, fear/worries, difficulty concentrating, memory loss, anxiety, fatigue, and blurred vision (8,10,13). Both physical and psychological symptoms ranked high among this sample documenting the complex nature of the HIV symptom experience, a finding that is supported in the literature (19).
There were significant differences in the frequency of symptoms between the participants who were currently taking medications and participants not taking medications. In this sample, participants on ARV medications reported fewer symptoms, which suggest that they have a positive effect on reducing HIV, related symptoms instead of causing symptom side effects on the study participants. Studies have demonstrated that when symptoms are controlled and quality of life improves, people living with HIV infection report higher overall functioning and greater medication adherence (20).
The co-occurrence between violent experiences and unhealthy behaviors such as tobacco, and drug use, including marihuana and cocaine, was also documented in this sample. These findings are consistent with other studies, which point to high rates of substance abuse, violent experiences, and unhealthy behaviors such as drug use among HIV- positive men and women (21-23). These co-occurrences are key components of the needs and vulnerabilities of the HIV-positive population in Puerto Rico. Asthma, anemia, and depression were also relevant comorbidities found in this study, which add to the complexity of HIVdisease management and may also play a crucial role in the participants’ quality of life. Further research is indicated to examine how combinations of co-occurrences and co-morbitities in the context of other complex interpersonal variables associated with HIV infection impact quality of life and adherence to ARV therapies.
In summary, the findings of this study indicate that, people living with HIV infection in Puerto Rico experience a broad array of physical and psychological symptoms. The study results although preliminary, provide important data on the variety of symptoms and their relationship to quality of life. These findings can assist health care providers in the identification of potential areas for designing effective management of symptoms on people living with HIV/AIDS infection. There are three important study limitations. This was a convenience sample, which means it may not be representative of all people living with HIV illness in Puerto Rico. Second, all of the instruments were self-report scales and may have some limitations including inaccurate recall of sign and symptom, intensity and duration, question comprehension and interpretation, and social desirability bias. Third, although the HIV/AIDS Targeted Quality of Life Instrument (HAT-QoL) and the Revised Sign and Symptom Checklist for Persons with HIV Disease (SSC-HIVrev) have adequate reported validity and reliabilities, they require more testing in Puerto Rico population with a larger sample size of women, men, and transgenders living with HIV infection.
As the number of people with HIV infection continues to increase in Puerto Rico, understanding the symptom experience, its impact upon quality of life, and developing strategies for symptom management will continue to be an important issue for nurses and health care providers in Puerto Rico. More research is needed to test symptom management interventions in the context of other complex interpersonal variables associated with HIV infection to improve quality of life and adherence to ARV therapies.
Acknowledgments
The authors gratefully acknowledge Lucha Contra el SIDA, Inc and the men, women and transgender who participated in this study. We wish to express gratitude to the members of the UCSF International HIV/AIDS Nursing Research Network.
This project was supported by the NIH Research Grants P20 NR008359 (Holzemer, PI) and P20 NR008342 (Rivero, PI) funded by the National Institute of Nursing Research and the National Center for Minority Health and Health Disparities.
References
- 1.Organización Panamericana de la Salud . Plan regional de VIH/ITS para el sector salud 2006−2015. Washington, D.C.: 2005. [Panamerican Health Organization: HIV/STI regional plan for the health sector.
- 2.Puerto Rico, AIDS Surveillance Report Puerto Rico Department of Health. 2008 [Google Scholar]
- 3.Holzemer WL, Rivero-Méndez M, Portillo C, Padilla G, Cuca Y, Vargas-Molina RL. The Nursing Research Center on HIV/AIDS Health Disparities. Nurs Outlook. 2004;52:226–233. doi: 10.1016/j.outlook.2004.04.011. [DOI] [PubMed] [Google Scholar]
- 4.Dodd M, Janson S, Facione N, et al. Advancing the science of symptom management. J Adv Nurs. 2001;33:252–260. doi: 10.1046/j.1365-2648.2001.01697.x. [DOI] [PubMed] [Google Scholar]
- 5.Kemppainen JK, Holzemer WL, Nokes K, et al. Self-care management of anxiety and fear in HIV disease. J Assoc Nurses in AIDS Care. 2003;14:21–9. doi: 10.1177/1055329002250958. [DOI] [PubMed] [Google Scholar]
- 6.Capili B, Anastasi JK. A symptom review: Nausea and vomiting in HIV. J Assoc Nurses in AIDS Care. 1998;9:47–56. doi: 10.1016/S1055-3290(98)80004-6. [DOI] [PubMed] [Google Scholar]
- 7.Reilly CA, Holzemer WL, Henry SB, et al. A comparison of patient and nurse ratings of human immunodeficiency virus-related signs and symptoms. Nurs Res. 1997;46:318–323. doi: 10.1097/00006199-199711000-00004. [DOI] [PubMed] [Google Scholar]
- 8.Hudson AL, Lee KA, Portillo CJ. Symptom experience and functional status among HIV-infected women. AIDS Care. 2003;15:483–492. doi: 10.1080/0954012031000134728. [DOI] [PubMed] [Google Scholar]
- 9.Tsai YF, Hsiung PC, Holzemer WL. Validation of a Chinese version of the sign and symptom checklist for persons with HIV disease. J Pain Symptom Manage. 2003;25:363–368. doi: 10.1016/s0885-3924(02)00687-5. [DOI] [PubMed] [Google Scholar]
- 10.Fantoni M, Del Borgo Ricci F, Izzi C, et al. Multicentre study on the prevalence of symptoms of symptomatic treatment in HIV infection. Central Italy PRESINT Group. J Palliat Care. 1997;13:9–13. [PubMed] [Google Scholar]
- 11.Servellen G, Sarna L, Jablonski KJ. Women with HIV: Living with symptoms. West J Nurs Res. 1998;20:448–464. doi: 10.1177/019394599802000404. [DOI] [PubMed] [Google Scholar]
- 12.Hudson A, Kirksey K, Holzemer WL. The influence of symptoms on quality of life among HIV-infected women. West J Nurs Res. 2004;26:9–23. doi: 10.1177/0193945903259221. [DOI] [PubMed] [Google Scholar]
- 13.Holzemer WL, Corless IB, Nokes KM, et al. Predictors of self-reported adherence in persons living with HIV disease. AIDS Patient Care STDS. 1999;13:185–197. doi: 10.1089/apc.1999.13.185. [DOI] [PubMed] [Google Scholar]
- 14.Kemmppainen JK. Predictors of quality of life. . J Assoc Nurses in AIDS Care. 2001;12:61–70. doi: 10.1016/S1055-3290(06)60171-4. [DOI] [PubMed] [Google Scholar]
- 15.Aranda-Naranjo B, Portillo C, Schietinger H, et al. Impact of Ryan White Care Act on services provided to women, children and families. In: Ryan C, editor. Directions in HIV services, delivery & care: A policy brief, Number 1: Vulnerable populations Office of Policy and Program Development, in HIV/AIDS Bureau. Health Resources and Services Administration; 2000. pp. 12–17. [Google Scholar]
- 16.Radloff L. The CES-D scale: a self-reported depresion scale for research in the general population. Appl Psy Meas. 1977;1:385–401. [Google Scholar]
- 17.Holmes WC, Shea JA. Two approaches to measuring quality of life in the HIV/AIDS population: HAT-QoL and MOS-HIV. Qual Life Res. 1999;8:515–527. doi: 10.1023/a:1008931006866. [DOI] [PubMed] [Google Scholar]
- 18.Portillo CJ, Rivero-Mendez M, Holzemer WL, et al. Quality of life of ethnic minority persons living with HIV/ AIDS. The J of Multicultural Nursing and Health. 2005;11:31–7. [Google Scholar]
- 19.Holzemer WL, Hudson A, Kirksey K, et al. The Revised Sign and Symptom Check-List for HIV (SSC-HIVrev). J Assoc Nurses in AIDS Care. 2001;12:60–70. doi: 10.1016/s1055-3290(06)60263-x. [DOI] [PubMed] [Google Scholar]
- 20.Mannheimer SB, Matts J, Telzak E, et al. Quality of life in HIV-infected individuals receiving antiretroviral therapy is related to adherence. AIDS Care. 2005;17:10–22. doi: 10.1080/09540120412331305098. [DOI] [PubMed] [Google Scholar]
- 21.Relf MV. Battering and HIV in men who have sex with men: A critique and synthesis of the literature. JANAC. 2001;12:41–8. doi: 10.1016/S1055-3290(06)60143-X. [DOI] [PubMed] [Google Scholar]
- 22.Kimmering R, Goldsmith R. Links between exposure to violence and HIV infection: Implications for substance abuse treatment. Alcohol Treat Q. 2000;18:61–70. [Google Scholar]
- 23.Logan TK, Leukefeld C. Violence and HIV risk behaviors among male and female crack users. J Drug Iss. 2000;30:261–282. [Google Scholar]