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.

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.

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 children's 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.

Correlates of depressive symptomatology among adult daughter caregivers of a parent with cancer.

BACKGROUND: 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. METHODS: Dyads comprised of 164 cancer outpatients (ages 60-90 years) and their adult caregiving daughter completed structured telephone interviews. Hierarchical regression was used to determine the individual and cumulative effect of five domains of potential predictors on the daughters' depressive symptomatology (Center for Epidemiologic Studies Depression Scale [CES-D]). RESULTS: The domains that were shown to be significantly predictive of a daughter's level of depressive symptomatology were daughter sociodemographics, constraints on/facilitators of caregiving, and caregiver burden. The domains of disease/patient characteristics and the daughter's appraisal of the caregiving situation were not found to be significant. The total model suggests that having a health-limiting condition, a greater sense of filial obligation, and greater caregiver burden were correlated with higher CES-D scores, whereas having graduated college, having other social roles, having favorable attitudes regarding her caregiving experience, and providing care in a greater number of domains of care were correlated with lower scores. CONCLUSIONS: These findings demonstrate the importance of focusing on situational factors that may function to constrain or facilitate caregiving when investigating caregiver depression.

Coping and mood in HIV-positive women.

To date, little empirical research on the association of coping style with mood in HIV-positive women has been carried out. The extant literature on HIV-positive men suggests that active coping is related to diminished distress while avoidant coping is associated with elevated distress. Previous research with HIV-positive women has not consistently confirmed these relationships. To add to this literature, scores from a sample of 145 HIV-positive women who completed the Ways of Coping Questionnaire and the Mental Health Inventory were analyzed. Correlations indicated that an escape-avoidance strategy was associated with more negative emotions. Other strategies related to negative emotions included accepting responsibility and a self-controlling approach. These findings are consistent with those previously reported for HIV-positive men, suggesting that similar kinds of coping strategies may be associated with positive and negative moods among HIV-positive men and women.

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 women's 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.

Illness-related support and negative network interactions: effects on HIV-infected men's depressive symptomatology.

Data collected as part of a psychosocial study of gay and bisexual men's experiences of living with HIV infection as a chronic illness were examined to investigate the psychological impact of the perceived availability of illness-related support and negative illness-related network interactions in a sample of men from this population. The sample was comprised of 144 HIV-infected non-Hispanic white, African American, and Puerto Rican Men living in the New York City metropolitan area. Analyses found evidence of a conjoint (interactive) effect between perceived support and negative network interactions. There was no evidence of either perceived availability of illness-related network support buffering or negative illness-related network interactions amplifying the effect of HIV/AIDS-related physical symptomatology on depressive symptomatology.

Correlates of change in depressive symptomatology among gay men with AIDS.

Longitudinal data from a sample of gay men living with AIDS (N = 128) were used to assess the relationship of change in various individual and situational correlates with change in depression. Results of regression analyses suggest that changes in physical symptomatology, in the number of bed days, and in the perceived sufficiency of social support are significantly correlated with concurrent change in depressive symptomatology. There was no evidence of change in the perceived sufficiency of social support buffering or amplifying the relationship of change in physical symptomatology with change in depression. The findings illustrate the need for the use of panel data (i.e., repeated assessments of the same individuals) and the assessment of change in both distress and its correlates among individuals living with AIDS.

Adjustment of children facing the death of a parent due to cancer.

OBJECTIVE: To compare predeath and postdeath levels of depression and anxiety reported by a sample of children who lost a parent to cancer ("study children") with the levels reported by children in a community sample who did not experience such a loss. METHOD: T scores for depressive symptomatology (Children's Depression Inventory) and state and trait anxiety (State-Trait Anxiety Inventory) were compared. Both samples were weighted to control for multiple participants from the same family. Weights for children in the community sample were further adjusted to match the distribution of the two samples with regard to gender, age, and number of children in the household. Comparisons were made using t tests and chi 2 tests. RESULTS: Whereas study children reported significantly higher levels of depression and anxiety in the predeath period, levels of symptomatology reported for both measures postdeath were similar in both samples. DISCUSSION: The data suggest that while many children experiencing the loss of a parent to cancer report elevated levels of depression and anxiety predeath, by 7 to 12 months postdeath their reports of depression and anxiety are comparable with those of similarly situated children in the community who did not experience such a loss.

Depressive distress among the spouses of terminally ill cancer patients.

Bereaved spouses comprise a population at risk for psychological distress. Evidence suggests that spouses 55 years of age and younger are at increased risk of morbid outcomes, including major depressive episodes. Although the emotional impact of the sudden loss of a spouse has been well studied, less attention has been paid to the psychological impact of loss that is foreseeable, as in the case of a serious illness. In this study, data were obtained from pre-death interviews with 103 well spouses of terminally ill cancer patients. Subjects were white, 55 years of age or younger, and living with the patient and their child(ren) aged 7 to 16 years old. Depressive distress was assessed using the Brief Symptom Inventory. Fifty eight percent of males and 42% of females had scores for depressive distress in a clinically significant range. Regression analyses revealed gender was the most important predictor of the level of depressive distress reported, followed by patient's functional status and whether the well spouse quit work as a result of the patient's illness. The number of children 18 years or younger living in the household was inversely related to the level of depressive distress. The results of this analysis suggest that a large proportion of well spouses of patients with cancer who are also the parents of school-aged children may experience significant depressive distress during the terminal phase of their spouse's illness. These findings are important for planning future programs and improving existing ones for the spouses of terminal cancer patients.

Psychological well-being of gay men with AIDS: contribution of positive and negative illness-related network interactions to depressive mood.

While the positive functions of social network interactions in ameliorating the effects of life stress are widely documented and acknowledged, a growing body of research investigations has demonstrated that social relationships can concurrently be a source of stress and that actions intended to be supportive may instead be experienced as psychologically disturbing. Data from a study of the social support experiences of gay men diagnosed with AIDS were examined to determine the contribution to the men's depressive mood of positive and negative network interactions (n = 83). Although the results are consistent with the social support literature regarding the beneficial effect of positive network interactions for seriously-ill individuals, the findings also indicate that negative illness-related network interactions are associated with decreases in depressive mood, as indicated by scores on the Center for Epidemiological Studies of Depression Scale (CES-D). The findings also demonstrate the additive effects of positive and negative network interactions and clearly point out the value of investigating the complexity and multiple functions of social interactions.

Reporting recent sexual practices: gay men's disclosure of HIV risk by questionnaire and interview.

AIDS-related research relies primarily on self-reports of sexual practices. Therefore, determining which data collection methods yield more candid information is critical. Data from a study of gay men's sexual adaptations to the AIDS epidemic provided an opportunity to explore the congruence of data collected using a self-administered questionnaire with data from an unstructured face-to-face interview designed to facilitate report of sexual risk behavior. We examined (i) the concordance of questionnaire and unstructured interview risk ratings when the two data sources are scored for the same 16 sexual behaviors; (ii) the concordance of questionnaire ratings and ratings obtained when all information on recent sexual practices available from the unstructured interview is considered; (iii) the relationship between serostatus and both concordance patterns between methods; and (iv) the difference by serostatus of reported risk level within method. Riskiest behaviors were reported on the questionnaire for all serostatus groups. Riskier behaviors were more likely to be reported on the questionnaire while more characteristic, safer behaviors were discussed in interview, regardless of HIV serostatus. The advantages of a combined methods--questionnaire/interview--strategy for sexual practice research are discussed.

Reducing the prevalence of unmet needs for concrete services of patients with cancer. Evaluation of a computerized telephone outreach system.

A two-stage study was undertaken of outpatients with advanced cancer who were receiving chemotherapy. In Stage 1 of the study, their needs for practical services and the barriers to those needs being met were assessed. Based on these results, an intervention was designed to reduce the prevalence of patients' unmet needs. The intervention was an automated telephone needs assessment coupled with social worker follow-up. The efficacy of this intervention was evaluated using an independent sample in Stage 2 in an experimental trial. Patients in the experimental group (n = 109), who received three automated surveys, reported fewer unmet needs in a subsequent comprehensive assessment than those in the control group (n = 130). The computerized telephone outreach system proved to be a cost-effective and reliable method for the early identification of unmet patient needs soon after they emerge and efficient deployment of limited professional staff.

Psychosocial adjustment of children with a terminally ill parent.

Although a substantial number of children experience serious parental illness and death, the adjustment problems attendant to the stress of having a fatally ill parent have not been examined systematically. This paper compares the psychosocial adjustment of 62 school-aged children with a terminally ill parent (study sample) with that of children in a community sample, using several standard rating scales. Study children had significantly higher levels of self-reported depression (Children's Depression Inventory) and anxiety (State-Trait Anxiety Inventory) and lower self-esteem (Self-Esteem Inventory). Parents also reported study children's significantly higher behavior problems and lower social competence (Child Behavior Checklist). Increased professional attention to this vulnerable population is encouraged.

New Jersey's Medicaid waiver for acquired immunodeficiency syndrome.

This article contains data from a study of New Jersey's home and community-based Medicaid waiver program for persons with symptomatic human immunodeficiency virus illness. Major findings include lower hospital costs and utilization for waiver participants compared with general Medicaid acquired immunodeficiency syndrome admissions in New Jersey. Average program expenditures were $2,400 per person per month. Based on study findings, it is evident that the waiver program is an important means of providing financial benefits and access to services and that comprehensive case management is a critical factor in assuring program quality.

The consequences in young adulthood of adolescent drug involvement. An overview.

To examine the consequences of adolescent drug use on the psychosocial and health functioning of young adults, we followed up 1004 young men and women from age 15 or 16 years to age 25 years. The use of four different classes of drugs was examined: cigarettes, alcohol, marijuana, and other illicit drugs. Twenty outcomes were examined, including continuity of participation in work and in family roles, level of education, delinquent activities, self-reported health and psychological symptoms, and use of five drug classes in early adulthood (including prescribed psychoactive medications). The effects of marijuana and of other illicit drugs could not be disentangled, so these drugs were treated as a single class. Controlling for initial individual differences in adolescence, use of the three major drug classes between adolescence and early adulthood affected most of the outcomes examined; most strongly continued use of the same substance. Unique drug effects included those of illicit drugs on increased delinquency, unemployment, divorce, and abortions, and of cigarettes on lowered psychological mood. Illicit drugs predicted drug-related health problems, whereas cigarette use predicted increased breathing difficulties.