Margaret V. McDonald

The undertreatment of pain in ambulatory AIDS patients.

&NA; Pain is highly prevalent in individuals with HIV disease, yet is often overlooked as a symptom requiring clinical intervention. We evaluated the adequacy of analgesic management for pain and identified predictors of pain undertreatment in a sample of 366 ambulatory AIDS patients using a prospective cross‐sectional survey design. Two hundred and twenty‐six of the 366 ambulatory AIDS patients surveyed reported “persistent or frequent” pain over the 2 week period prior to the survey. Adequacy of analgesic therapy was assessed using the Pain Management Index (PMI ‐ a measure derived from the Brief Pain Inventory) and the type and frequency of analgesic medications prescribed for pain. Results indicated that nearly 85% of patients were classified as receiving inadequate analgesic therapy based on the PMI. Less than 8% of the 110 patients who reported “severe” pain were prescribed a “strong” opioid (e.g., morphine), as suggested by published guidelines. Adjuvant analgesic drugs (e.g., antidepressant medications) were prescribed in only 10% of the patients. Women, less educated patients, and patients who reported injection drug use as their HIV transmission risk factor were most likely to have received inadequate analgesic therapy. These results demonstrate the alarming degree of undertreatment of pain in ambulatory patients with AIDS, and indicates the need to improve the management of AIDS‐related pain in this underserved population. Future research should elucidate the factors that impede adequate pain management in order to overcome obstacles to adequate treatment.

Psychosocial aspects of upper extremity lymphedema in women treated for breast carcinoma

Lymphedema of the upper extremity following breast carcinoma is highly distressing and disabling.

Pain in ambulatory AIDS patients. I: Pain characteristics and medical correlates

&NA; The characteristics and impact of pain were evaluated in a prospective cross‐sectional survey of 438 ambulatory AIDS patients recruited from health care facilities in New York City. More than 60% of the patients reported ‘frequent or persistent pain’ during the 2 wks preceding the study. Patients with pain reported an average of 2.5 different pains. On the 0–10 numerical scale of the Brief Pain Inventory (BPI), mean pain intensity ‘on average’ was 5.4 (SD = 2.2; range = 0–10), and mean pain ‘at its worst’ was 7.4 (SD = 2.0; range = 1–10). The pain‐related functional interference index (sum of the seven item BPI subscale) was 42.6 (SD = 17.2; range = 0–70). Demographic variables were not associated with the presence of pain, but the number of current HIV‐related symptoms, treatment for HIV‐related infections, and the absence of antiretroviral medications were significantly associated with the presence of pain. Female gender, non‐Caucasian race, and number of HIV‐related physical symptoms were significantly associated with pain intensity. Presence of pain and increasing pain intensity were significantly associated with greater impairment in functional ability (Karnofsky Performance Status, BPI functional interference index) and physical symptom distress (Memorial Symptom Assessment Scale). Results demonstrate high levels of pain and pain‐related functional impairment among patients with AIDS. The presence and intensity of pain are associated with more advanced HIV disease and pain intensity is also associated with demographic factors (gender, race).

Symptom Prevalence, Characteristics, and Distress in AIDS Outpatients ☆

Symptom distress is an important but poorly characterized aspect of quality of life in AIDS patients. To assess and characterize the symptoms and symptom distress associated with AIDS, 504 ambulatory patients with AIDS were evaluated between December, 1992 and December, 1995. The assessment included measures of symptom distress, physical and psychosocial functioning, and demographic and disease-related factors. Patients described symptoms during the previous week using the Memorial Symptom Assessment Scale Short Form (MSAS-SF), a validated measure of physical and psychological symptom distress. The mean age was 38.6 years (range 18-69); 56% were male. African-Americans comprised 40% of the sample, Caucasians 35%, and Hispanics 23%. Ninety-three percent had CD4+ T-cell counts below 500, and 66% had counts below 200; 69% were classified in CDC category C (history of AIDS-defining conditions). Fifty-two percent reported intravenous drug use. Karnofsky performance status was > or = 70 in 80% of the patients. No patients were taking protease inhibitors. The mean (+/- SD) number of symptoms was 16.7 +/- 7.3. The most prevalent symptoms were worrying (86%), fatigue (85%), sadness (82%), and pain (76%). Patients with Karnofsky performance scores < 70 had more symptoms and higher symptom distress scores than patients with scores > or = 70 (21.2 +/- 6.5 vs. 15.6 +/- 7.1 symptoms/patient; 2.3 +/- 0.8 vs. 1.6 +/- 0.8 on the Global Distress Index [GDI] of the MSAS-SF; P < 0.0001 for both). Patients who reported intravenous drug use as an HIV transmission factor reported more symptoms and higher overall and physical symptom distress than those who reported homosexual or heterosexual contact as their transmission factor (17.8 +/- 7.5 vs. 15.4 +/- 6.9 symptoms/patient, P = 0.0002; 1.9 +/- 0.9 vs. 1.6 +/- 0.8 on the MSAS-GDI, P = 0.002). Both the number of symptoms and symptom distress were highly associated with psychological distress and poorer quality of life; for example, r = -0.69 (P < 0.0001) between GDI scores and scores on a validated measure of quality of life. Neither gender nor CD4+ T-cell count was associated with symptom number or distress. Responses from this self-referred sample of AIDS outpatients indicate that AIDS patients experience many distressing physical and psychological symptoms and a high level of distress. Both the number of symptoms and the distress associated with them are associated with a variety of disease-related factors and disturbances in other aspects of quality of life. Symptom assessment provides information that may be valuable in evaluating AIDS treatment regimens and defining strategies to improve quality of life.

Use of the Zung Self‐Rating Depression Scale in cancer patients: Feasibility as a screening tool

The feasibility, utility and reliability of the Zung Self‐Rating Depression Scale (ZSDS) was examined in a large sample of ambulatory cancer patients. This tool and a brief 11‐item version of the ZSDS (excluding nine items concerning somatic symptoms), which was developed during the course of the survey, were used to estimate the prevalence of self‐reported depressive symptoms. Patient characteristics that may be associated with an increased risk of clinically significant depressive symptoms were also explored. Twenty‐five ambulatory oncology clinics affiliated with Community Cancer Care, Inc. enrolled and surveyed 1109 subjects. The alpha coefficients for the ZSDS (0.84) and the Brief ZSDS (0.84) indicated high levels of internal consistency. The overall prevalence of clinically significant depressive symptoms as defined by the ZSDS was 35.9% and by the Brief ZSDS was 31.1%. The ZSDS and the Brief ZSDS were highly correlated (r=0.92). The medical and demographic variables most associated with clinically significant depressive symptoms were more advanced stage of disease at time of diagnosis, lung cancer as primary tumor type, higher ECOG rating (greater degree of physical disability), and having been prescribed antidepressant medications. The high prevalence of depressive symptoms observed in this study is consistent with rates found in other studies of self‐report depression instruments in cancer patients. The initial indicators of internal consistency and validity suggest that the Zung SDS or the brief version may be useful screening tools to identify depressive symptoms in oncology patients.

Pain syndromes and etiologies in ambulatory AIDS patients

Abstract Ambulatory AIDS patients participating in a quality of life study were recruited for an assessment of pain syndromes. Of 274 patients with pain, 151 (55%) consented to the assessment which included a clinical interview, neurologic examination, and review of medical records. The number, type, and etiology of pains were evaluated in terms of risk factors, age, sex, CD4+ lymphocyte count, and performance status. The average number of pains per patient was 2.7 (range, 1–7), yielding a total of 405 pains. The most common pain diagnoses were headache (46% of patients; 17% of all pains), joint pain (31% of patients; 12% of pains), pain due to polyneuropathy (28% of patients; 10% of pains), and muscle pain (27% of patients; 12% of pains). Pathophysiology was inferred for all pain syndromes (except for headache), 45% of pain syndromes were somatic in nature, 15% were visceral, 19% were neuropathic, and 4% were unknown, psychogenic, or idiopathic; 17% of pains were classified as headache, hence pathophysiology could not be determined. Pain resulted from diverse etiologies, including the direct effects of HIV/AIDS‐related conditions (30%) pre‐existing unrelated conditions (24%), and therapies for HIV/AIDS and related conditions (4%). The latter category, pain related to HIV therapies, occurred in 11% of patients. In 37% of the pains, the etiology could not be determined from the information available. In univariate analyses, lower CD4+ cell counts were significantly associated with polyneuropathy (P<0.05) and headache (P<0.05), and female gender was significantly associated with the presence of headache (P<0.05) and radiculopathy (P<0.001). These data confirm the diversity of pain syndromes in AIDS patients, clarify the prevalence of common pain types, and suggest associations between specific patient characteristics and pain syndromes. The large proportion of patients who could not be given a diagnosis underscores the need for a careful diagnostic evaluation of pain in this population.

Fatigue in ambulatory AIDS patients.

Although preliminary reports indicate that fatigue is a common symptom of human immunodeficiency virus (HIV) disease, little empirical research has focused on its prevalence or characteristics among patients with acquired immunodeficiency syndrome (AIDS). We assessed the frequency of fatigue and its medical and psychological correlates, in a cross-sectional survey of ambulatory AIDS patients. Ambulatory patients with AIDS who participated in a study of quality life (N = 427) were classified into fatigue/no fatigue groups based on their responses to fatigue items on the Memorial Symptom Assessment Scale (MSAS) and the AIDS physical symptom checklist. Self-report inventories were also administered to assess psychological distress, depressive symptoms, and overall quality of life. Medical information was elicited through clinical interview and review of medical chart. Fifty-four percent of the patients endorsed both of the fatigue items from the MSAS and the AIDS physical symptom checklists, and were classified as having fatigue. Women were significantly more likely to report fatigue than men (chi square = 5.28, df = 1, P < 0.03), and patients reporting homosexual contact as their transmission risk factor were significantly less likely to report fatigue than were patients reporting injection drug use or heterosexual contact (chi square = 5.13, df = 2, P < 0.03). The presence of fatigue was significantly associated with the number of current AIDS-related physical symptoms [t(425) = 8.00, P < 0.0001], current treatment for HIV-related medical disorders (chi square = 12.51, df = 1, P < 0.0001), anemia [t(174) = -2.35, P < 0.02], and pain (chi square = 36.36, df = 1 P < 0.0001). Patients with fatigue also had significantly poorer physical functioning ability [Karnofsky: t(422) = -6.27, P < 0.0001], as well as greater degree of overall psychological distress and lower quality of life [F(5,418) = 23.79, P < 0.0001], as measured by the Brief Symptom Inventory, Beck Depression Inventory, Beck Hopelessness Scale, Functional Living Inventory for Cancer (modified for AIDS), and the MSAS Psychological Distress Subscale. Fatigue is a common symptom in ambulatory AIDS patients and is associated with significant physical and psychological morbidity.

Pain in ambulatory AIDS patients. II : Impact of pain on psychological functioning and quality of life

&NA; The relationships among pain, psychological distress and other quality of life concerns were examined through a prospective cross‐sectional survey of 438 ambulatory AIDS patients recruited from health care facilities in New York City. In this sample, 274 (62.6%) patients reported frequent or persistent pain during the prior 2 wks. Patients with and without pain completed a questionnaire packet that included measures of psychological symptom distress (Brief Symptom Inventory and the Psychological Distress Subscale of the Memorial Symptom Assessment Scale), depression (Beck Depression Inventory and Beck Hopelessness Scale), social support (Social Support Questionnaire), and overall quality of life (Functional Living Index ‐ Cancer, modified for AIDS). Multivariate analyses (MANOVA, multiple regression) revealed significant associations between the presence and intensity of pain and scores on the measures of psychological distress, depression, hopelessness, and quality of life (P < 0.0001 for most analyses). Perceived adequacy of social support was also significantly associated with lower levels of psychological distress and depression, and better quality of life. These results demonstrate the significant relationships between pain, psychological well‐being, and quality of life, and affirm the need to provide adequate treatment of pain in patients with AIDS.

Patient-related barriers to pain management in ambulatory AIDS patients

&NA; A number of studies have demonstrated that pain is dramatically undertreated among patients with AIDS and that opioids in particular are rarely prescribed. To date, however, there has been no systematic attempt to examine patient‐related barriers to the management of pain in AIDS. This study examines potential patient‐related barriers to pain management in patients with AIDS using the Barriers Questionnaire (Ward et al., Pain, 52 (1993) 319–324), and assesses gender, racial, and other demographic differences in the endorsement of these barriers. We surveyed 199 ambulatory patients with AIDS, recruited from numerous sites in New York City, as part of an ongoing study of pain and quality of life in ambulatory AIDS patients. In addition to obtaining demographic and medical data, we administered a number of self‐report questionnaires including the Brief Pain Inventory (BPI), the Brief Symptom Index (BSI), the Beck Depression Inventory (BDI), and the Memorial Symptom Assessment Scale (MSAS). Barriers to pain management were assessed using a modified version of the Barriers Questionnaire (BQ), including the original 27 questions from this self‐report instrument along with an additional 12 items developed for an AIDS population. Results indicated that the most frequently endorsed BQ items were those concerning the addiction potential of pain medications and physical discomfort associated with opioid administration (e.g. injections) or side effects (e.g. nausea, constipation). There were no associations between age, gender, or HIV transmission risk factor and total scores on the BQ; however, Caucasian patients endorsed significantly fewer BQ items than did non‐Caucasian patients and years of education was negatively correlated with BQ scores. Scores on the BQ were also significantly correlated with number of physical symptoms (MSAS) and scores on several self‐report measures of psychological distress (the BSI Global Distress Index, BDI total scores). Patient‐related barriers (i.e. BQ total scores) were significantly associated with undertreatment of pain (as measured by the Pain Management Index), and added significantly to the prediction of undertreatment in a logistic regression analysis, even after controlling for the impact of gender, education and IDU transmission risk factor. These data suggest that patient‐related barriers to pain management may add to the already considerable likelihood of undertreatment of AIDS‐related pain.

Automating the medication regimen complexity index

Objective To adapt and automate the medication regimen complexity index (MRCI) within the structure of a commercial medication database in the post-acute home care setting. Materials and Methods In phase 1, medication data from 89 645 electronic health records were abstracted to line up with the components of the MRCI: dosage form, dosing frequency, and additional administrative directions. A committee reviewed output to assign index weights and determine necessary adaptations. In phase 2 we examined the face validity of the modified MRCI through analysis of automatic tabulations and descriptive statistics. Results The mean number of medications per patient record was 7.6 (SD 3.8); mean MRCI score was 16.1 (SD 9.0). The number of medications and MRCI were highly associated, but there was a wide range of MRCI scores for each number of medications. Most patients (55%) were taking only oral medications in tablet/capsule form, although 16% had regimens with three or more medications with different routes/forms. The biggest contributor to the MRCI score was dosing frequency (mean 11.9). Over 36% of patients needed to remember two or more special instructions (eg, take on alternate days, dissolve). Discussion Medication complexity can be tabulated through an automated process with some adaptation for local organizational systems. The MRCI provides a more nuanced way of measuring and assessing complexity than a simple medication count. Conclusions An automated MRCI may help to identify patients who are at higher risk of adverse events, and could potentially be used in research and clinical decision support to improve medication management and patient outcomes.