Daniel Karus

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

Correlates of Depressive Symptomatology among Adult Daughter Caregivers of a Parent with Cancer

As a consequence of advances and changes in the detection and treatment of cancer, increasing demands are being placed on familial caregivers of elderly cancer patients. Understanding the factors that place familial caregivers at risk of poor psychological outcomes and threaten their ability to provide adequate care is important for maintaining chronically ill patients in the community.

Child survivors of parental death from cancer or suicide: depressive and behavioral outcomes

Depressive symptoms, social competence, and behavior problems of prepubescent children bereaved within 18 months of parental death from cancer (57 families, 64 children) or suicide (11 families, 16 children) were compared. Most children reported normative levels of depressive symptoms. Children whose parents died from suicide, compared with those whose parents died from cancer, reported significantly more depressive symptoms, involving negative mood, interpersonal problems, ineffectiveness, and anhedonia. Parental reports of childrens competence and behavior were similar to a normative sample of children and did not differ between the children bereaved by parental cancer or suicide. Additional research should focus on other factors, such as family psychopathology, stresses, and impact of stigma, which may influence the course of bereaved children. Copyright

Racial differences in attitudes toward protease inhibitors among older HIV-infected men.

Recent advances in the treatment of HIV infection, particularly those associated with the advent of a new class of medications - protease inhibitors (PIs) - have focused interest on the problem of medication non-adherence. Earlier research on antivirals suggests that patient attitudes toward a medication or treatment play an important role in influencing its use. Attitudes toward PIs were explored using data from a study of late middle-aged and older adults (ages 50-67) living with HIV/AIDS (N = 38) who had been or were currently users of PIs at the time of accrual in late 1997. Comparisons were made between African American and White men with regard to perceptions of: medication efficacy, self-efficacy, physician competence, quality of life, side effects, skipping medication doses and the timing of protease initiation. Results of these analyses suggest significant differences between White and African American men. African American men not only expressed significantly more doubt regarding their ability to utilize PIs and adhere to PI treatment regimens than Whites, but also reported significantly more doubt regarding physician competence with regard to PIs. African American men were also more likely than Whites to question the timing of their initiation of treatment with PIs. The findings suggest that these racial differences may be important for creating patient education strategies and the targeting of non-adherence prevention efforts.

Psychosocial Characteristics of New York City HIV-Infected Women Before and After the Advent of HAART

OBJECTIVES We compared level of psychosocial distress of HIV-infected women living in New York City before the advent of highly active antiretroviral therapy (HAART) with level of psychosocial distress reported by women living with the disease after the use of HAART became widespread. METHODS Data were from HIV-positive New York City women aged 18 to 50 years, enrolled through outreach and self-referral. We compared scores on measures of psychological state and psychosocial adjustment to illness of 74 women interviewed in 1994-1996 with scores of a matched group of 74 women interviewed in 2000-2002. RESULTS A significant difference between groups was found only with regard to adjustment to illness in their domestic environment, with poorer adjustment reported, on average, by women in the 2000-2002 sample. CONCLUSIONS Although new treatments have significantly improved the physical health of those living with HIV/AIDS, no evidence was found that these treatments significantly improved psychological health for women, regardless of history of protease inhibitor use.

Psychological adjustment of women with HIV/AIDS: Racial and ethnic comparisons

The relationship of race and ethnicity with standardized measures of depressive symptomatology and mental health was examined in a sample of HIV-infected African American (n = 48), Puerto Rican (n = 50), and White non-Hispanic (n = 48) women in New York City. Mean scores of women from all three racial and ethnic groups were higher than those reported for normative samples on measures of depressive symptomatology and psychological distress, and mean scores on measures of psychological well-being were lower. Puerto Rican women reported significantly higher levels of depressive symptomatology than either African American or White women. Puerto Rican women also reported significantly higher levels of psychological distress and lower levels of psychological well-being than African American women. The findings suggest that while all HIV-infected women are at risk of poor adjustment, Puerto Rican women may be especially vulnerable. They also point to the need for future research to determine what factors in these womens lives are predictive of adjustment, especially those factors amenable to intervention.

Testing and treatment behaviour of HIV-infected women: White, African-American, Puerto Rican comparisons

Findings from a study of the testing and treatment behaviour and experiences of African-American (n = 31), Puerto Rican (n = 30) and non-Hispanic white (n = 23) HIV-infected women are reported. All women were 20-45 years of age and had not yet been diagnosed with AIDS. Data for the analyses presented were gathered through an interviewer-administered questionnaire completed before respondents participated in an unstructured interview. The analyses examine race/ethnic differences in womens delays in seeking testing and medical care, and in sources and types of HIV-treatment. Most significant for primary and secondary prevention efforts, the findings suggest that a significant proportion of women who suspect they are infected may delay being tested, and further, a substantial proportion who learn they are seropositive may delay seeking medical care. Thus important opportunities among HIV-infected women for secondary prevention through timely antiviral and prophylactic treatment, and for primary prevention through risk-reduction counselling may be being missed in many cases.

Psychosocial Adjustment of Women to Living with HIV/AIDS

Psychosocial adjustment to living with HIV/AIDS was examined in a purposive sample of 146 New York City, African-American, Puerto Rican, and White non-Hispanic women using the Psychosocial Adjustment to Illness Scale, self-report version (PAIS-SR). Puerto Rican participants reported significantly more problems than African-Americans on the Summary Scale and the Domestic Environment and Psychological Distress domain subscales and significantly more problems than either Whites or African-Americans on the Social Environment domain subscale. Problematic sexual relationships were found to be significantly associated with race/ethnicity, although scores did not differ significantly between any two groups. On average, women in all three racial/ethnic groups reported high levels of psychosocial adjustment problems to their illness relative to normative data for cancer patients. These findings suggest that, while all HIV-infected women may be at risk for problematic psychosocial adjustment to living with HIV/AIDS, Puerto Rican women may be especially vulnerable.

Examining the Social Context in the Caregiving Experience: Correlates of Global Self-Esteem Among Adult Daughter Caregivers to an Older Parent With Cancer

Objectives: To examine the associations between various patient, disease, situation, and caregiver characteristics (organized by five conceptual domains) and global self-esteem among caregiver daughters to parents with cancer. Method: Dyads comprised of 237 cancer outpatients and their adult caregiving daughter completed structured telephone interviews. Results: Two of the five domains of potential correlates significantly predicted caregiving daughters’ global self-esteem—daughters’ sociodemographics and constraints on/facilitators of caregiving. Daughters’ overall sense of self-worth was directly correlated with their household income and inversely correlated with greater depressive affect and the number of patient needs for which someone else provided assistance. It was also correlated with the daughters’ other role obligations. A higher sense of self-worth was associated with either being employed or having to care for a child/grandchild; a lower sense of self-worth was associated with having a spouse/partner. Discussion: The present analysis documents the complexity of social connectedness, demonstrating that various role obligations contribute to caregiving daughters’ global self-esteem in different ways. In the context of assuming cancer careprovision, daughters’ existing repertoire of social roles may possibly mediate the stress associated with their care involvement or serve as a buffer against the strain of the caregiving experience.

Health Status and Service Needs of Male Inmates Seriously Ill With HIV/AIDS at Two Large Urban Jails

Male inmates with HIV/AIDS being served by case-management programs for those seriously ill in jails in Los Angeles (n = 34) and New Orleans (n = 20) are described and compared. At both sites, most were Black and poor with a history of substance abuse. Psychological functioning (Mental Health Inventory [MHI-5]) scores indicated poor mental health. Inmates reported an average of more than 10 symptoms, and at least 25% reported needing multiple medical, practical, and social services. These findings document a subpopulation of jail inmates who are seriously ill with HIV/AIDS, and they describe the potential care and service needs of such inmates. Given the chronicity of HIV/AIDS and the importance of strict adherence to treatment protocols, it is important not only to facilitate access to care and services for inmates but also to secure continuity of care and access to services when inmates are transferred to another facility or released into the community.