End-of-life care: findings from a national survey of informal caregivers

BACKGROUND: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking. METHODS: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months. RESULTS: An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role. CONCLUSIONS: End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.     

Smoking and musculoskeletal disorders: findings from a British national survey

OBJECTIVES: To explore the relation between smoking habits and regional pain in the general population. METHODS: A questionnaire was mailed to 21 201 adults, aged 16-64 years, selected at random from the registers of 34 British general practices, and to 993 members of the armed services, randomly selected from pay records. Questions were asked about pain in the low back, neck, and upper and lower limbs during the past 12 months; smoking habits; physical activities at work; headaches; and tiredness or stress. Associations were examined by logistic regression and expressed as prevalence ratios (PRs). RESULTS: Questionnaires were completed by 12 907 (58%) subjects, including 6513 who had smoked at some time, among whom 3184 were current smokers. Smoking habits were related to age, social class, report of headaches, tiredness or stress, and manual activities at work. After adjustment for potential confounders, current and ex-smokers had higher risks than lifetime non-smokers for pain at all of the sites considered. This was especially so for pain reported as preventing normal activities (with PRs up to 1.6 in current v never smokers). Similar associations were found in both sexes, and when analysis was restricted to non-manual workers. CONCLUSIONS: There is an association between smoking and report of regional pain, which is apparent even in ex-smokers. This could arise from a pharmacological effect of tobacco smoke (for example, on neurological processing of sensory information or nutrition of peripheral tissues); another possibility is that people with a low threshold for reporting pain and disability are more likely to take up and continue smoking.     

Patterns of ecstasy use in Australia: findings from a national household survey

Aim To examine the patterns, correlates and context of ‘recent’ (preceding 12 months) ecstasy use using data from a nationally representative sample of Australians interviewed in 2001. Design Data were analysed from the 2001 National Drug Strategy Household Survey, a multi‐stage probability sample of Australians aged 14 years or older. The focus was on ecstasy use among 14–19‐year‐olds and 20–29‐year‐olds, as the prevalence of recent use is highest among these groups. Recent ecstasy users were compared to those who had not used in the preceding 12 months and those who had never tried ecstasy (‘others’) on a range of demographic and drug use variables. Comparisons were also drawn between the patterns and context of ecstasy use of the two groups of recent ecstasy users (users aged between 14–19 and 20–29 years). Findings In 2001, 6.1% of Australians aged 14 years or older reported life‐time ecstasy use, and 2.9% reported recent use. One in 10 (10.4%) of 20–29‐year‐olds and 5.0% of 14–19‐year‐olds had used ecstasy recently. Although there were few demographic differences between recent users and others, compared to those who had not recently used ecstasy, recent ecstasy users were more likely to have used a range of other drugs. Although recent ecstasy users of both age groups could be characterized as polydrug users, 20–29‐year‐old users were more likely to use other drugs concurrently with ecstasy. Conclusions Following cannabis and amphetamines, ecstasy is the third most widely used illicit drug in Australia. Other than a greater likelihood of having used other drugs, few demographic variables appear to distinguish recent ecstasy users from others. Australian users in their 20s use ecstasy within a context of greater polydrug use than those in their teens. Although most ecstasy users described a pattern of occasional use, minorities reported weekly use, and difficulties in reducing their use despite wishing to do so. There is a need to develop interventions to assist problematic ecstasy users to reduce their use should they wish to do so and to increase education about the potential risks of combining ecstasy with other drugs.     

Adoption of patient-centered care practices by physicians: results from a national survey

BACKGROUND: Little is known about the extent to which primary care physicians (PCPs) practice patient-centered care, 1 of the Institute of Medicine's 6 dimensions of quality. This article describes the adoption of patient-centered practice attributes by PCPs. METHODS: Mail survey; nationally representative physician sample of 1837 physicians in practice at least 3 years postresidency. RESULTS: Eighty-three percent of PCPs surveyed are in favor of sharing of medical records with patients. Most physicians (87%) support team-based care. But, only 16% of PCPs communicate with their patients via e-mail; only 36% get feedback from their patients. Seventy-four percent of PCPs still experience problems with availability of patients' medical records or test results; less than 50% have adopted patient reminder systems. Thirty-three percent of physicians practicing in groups of 50 or more have adopted 6 to 11 of the 11 patient-centered care practices targeted in the survey compared with 14% of solo physicians. CONCLUSION: Although some patient-centered care practices have been adopted by most PCPs, other practices have not yet been adopted as broadly, especially those targeting coordination, team-based care, and support from appropriate information systems.     

The needs of people with HIV in the UK: findings from a national survey

The aim of this study was to describe the needs of people living with HIV in the UK. A questionnaire addressing 17 areas of need was completed by 1821 people living with HIV in the UK. The core need indicator was a personal assessment of happiness with current state. A quarter of all respondents were happy with their current state across all needs. For each need, the following proportions were unhappy with their current state: sex, 40%; anxiety/depression, 33%; sleep, 32%; self-confidence, 32%; money, 28%; household chores and self-care, 18%; housing, 18%; appetite, eating and drinking, 17%; friendships, 17%; discrimination, 16%; mobility, 15%; dealing with health professionals, 15%; relationships, 14%; drugs and alcohol, 9%; taking treatments regularly, 5%; HIV treatment knowledge, 4%; looking after children, 2%. Although some people with HIV are coping well with minimal unmet need, the overall picture of need is dominated by personal, social and economic issues.     

Outpatient wound preparation and care: a national survey.

STUDY OBJECTIVE: To sample the practice styles of emergency physicians caring for acute traumatic wounds. DESIGN: Written survey. SETTING: US emergency departments obtained from the American College of Emergency Physicians mailing list. SUBJECTS: Randomly selected ACEP members. MAIN RESULTS: One hundred fifty-one of 285 (53%) survey mailings were returned. Eighty-six percent of respondents were primarily clinicians, and the majority (61.6%) worked in EDs with annual patient visits between 21,000 and 50,000. The majority of respondents (64.2%) were certified by the American Board of Emergency Medicine. Nineteen percent managed wounds based on provider preference despite the existence of written wound management protocols. We identified a variety of practices that are contrary to current literature and textbook recommendations. Fifty-eight (38%) soaked wounds, whereas 21% used either 10% povidone iodine or hydrogen peroxide to cleanse wounds. One hundred one (67%) scrubbed the entire wound surface using, among other methods, cotton gauze (59%) or a coarse, bristle-laden sponge (38%). Forty (27%) irrigated wounds using techniques that have not been proven to deliver the 5 to 8 psi necessary for adequate tissue cleansing. Delayed primary closure, a treatment option for lacerations at increased risk for infection, was infrequently or never practiced by 76% of respondents. All respondents administered IV antimicrobials at least occasionally for simple outpatient lacerations. CONCLUSION: Methods of preparing, treating, and following outpatient wounds vary among emergency physicians, and these results support the idea that no de facto standard of care exists for this clinical problem. Outpatient wound care techniques routinely practiced (ie, soaking, scrubbing, use of full-strength hydrogen peroxide or full-strength povidone iodine) may be harmful based on limited animal and human research, whereas other proven techniques (ie, delayed primary closure) are infrequently practiced by many emergency physicians.     

Palliative care for patients with dementia: a national survey

OBJECTIVES: To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN: Telephone and Web‐based surveys. SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list. PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS: Ninety‐four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end‐of‐life care. CONCLUSION: Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.     

Covariates of condom use in South Africa: findings from a national population-based survey in 2008

Condom use has increased significantly over the past decade among all adult age groups in South Africa, and it is widely believed to have played a major role in the recent significant decline in HIV incidence in the country, especially among young people. This study investigated the demographic, behavioural and psychosocial correlates of condom use at last sex among a national random probability sample of sexually experienced respondents aged 15 years and older (n = 7817, 42.9% males and 57.1% females) using data from the 2008 South African national HIV population-based household survey. Multivariate logistic regression analyses revealed that for both sexes, being aged 15–24 years and 25–49 years old, Black African, never married and unemployed were significantly associated with condom use at last sex. In addition, for males, condom use was associated with having had two or more sexual partners, whereas for females it was associated with living in urban formal, urban informal and rural informal areas, and having been in a current relationship for less than a year. Based on these findings, it was concluded that there is a need to further promote condom use especially among the subgroups of people with lower rates of condom use in order to reduce their risk of HIV infection.     

An inverse association between self-reported arthritis and mortality in the elderly: findings from the national long-term care survey

Major musculoskeletal conditions including arthritis represent an increasing burden on individuals and societies. We analyzed the association between self-reported arthritis and mortality in the U.S. elderly disabled and non-disabled individuals using unique disability-focused data from the large-scale population-based National Long Term Care Survey. It was found that males and females who reported arthritis/rheumatism have, generally, smaller risks of death than those who did not report those conditions. This inverse relationship is more pronounced in disabled individuals. This finding holds for both short-term (relative risk [RR] = 0.81; 95% confidence interval [CI] = 0.75-0.88 for males and RR = 0.76; CI = 0.71-0.82 for females) and long-term follow-ups (RR = 0.82; CI = 0.78-0.87 for males and RR = 0.83; CI = 0.79-0.87 for females). For females, this effect is age insensitive, while for males it is limited to ages below 85. Demographic and 19 major self-reported geriatric conditions have trivial effect on these risks, supporting the view that a better survival of diseased individuals can be attributed to the effects of medical treatment. Given the widespread prevalence of arthritis/rheumatism and disability in elderly populations and the increasing population of the elderly, these findings call for comprehensive analyses of factors driving better survival and medical costs associated with extended lives.     

Feelings group for adult day care

An adult day care center incorporated a feelings group into its daily program, based on Yalom's focus group model (1983). The group discussion encourages communication, understanding, and trust, and buffers the effects of physical and emotional losses sustained by participants. Anticipated outcomes include increased self-esteem, decreased loneliness, and regained social skills.     

The epidemiology of alcohol use in Australian women: findings from a national survey of women''s drinking

This is the first study of alcohol use, alcohol problems and alcohol dependence in a general population sample of Australian women using a standardized screening instrument developed by the World Health Organization, the Alcohol Use Disorders Identification Test (AUDIT). Sixty-six percent of a sample of 6000 women randomly selected from the electoral rolls responded to the questionnaire. The majority of women (87%) had drunk alcohol at some time in their lives, while 82% had consumed alcohol within the past 12 months. Of the women who currently drank alcohol, 34% were classified as hazardous drinkers, 4% as harmful drinkers and 1% as dependent according to AUDIT definitions. Using a cut-off score of 8 for the AUDIT, 8% of women were classified as currently having a drinking pattern of hazardous or harmful alcohol consumption. These women were more likely to be younger (17-44 years), single, or living in a de facto relationship. The results of this survey provide important data which can be used as a bench-mark to measure changes in women's drinking behaviour and drinking related problems.     

Pediatric emergency medicine--current standards of care: results of a national survey

To assess current standards of care in pediatric emergency medicine, a questionnaire was mailed in May 1988 to the medical directors of all existing pediatric emergency medicine fellowship programs. Twenty-three programs (96%) completed this survey, which consisted of questions regarding census, staffing patterns, ancillary services, patient follow-up, and various clinical issues. The major deficiencies in pediatric emergency care identified by this survey concerned patient waiting time, weekend radiology coverage, patient follow-up, feedback to referring physicians, and feedback to emergency department housestaff on hospitalized patients. The data suggest that pediatric EDs associated with fellowship training programs are improving their quality of care, yet room for advancement in many categories remains.     

Strengthening the fellowship training experience: findings from a national survey of fellowship trained geriatricians 1990-1998

Geriatric fellowship training has significantly advanced in the past 2 decades in number, organization, and accreditation of formal fellowship programs. A recent survey examined career decision-making, fellowship training, and current professional activities of fellowship trained geriatricians. This paper focuses upon further desired fellowship training identified by these individuals. The responses reflect skills relevant to four aspects of professional performance: administration, management, clinical geriatrics, research, and education. More than half of the respondents documented the need for increased training in administration, including long-term care medical directorship and Medicare/managed care. Regarding clinical training, 66% recommended additional subspecialty training, particularly in psychiatry, neurology, rehabilitation, and hospice/palliative care. Seventeen percent identified a need for training in research methodology, grant writing, and mentorship. Some 6% indicated a need for further training in education, citing teaching skills and program/faculty development. This article provides examples of opportunities to strengthen each of the four defined areas, including formal training in medical administration by the American Medical Director's Association, model strategies for incorporating subspecialties, hospice/palliative care, programs to pursue graduate level training in research at many universities, and faculty development programs such as those offered by Harvard and Stanford. Accredited geriatric fellowship programs as well as fellows should recognize potential gaps in training, and make available opportunities to strengthen these areas critical to preparing for future careers in geriatric medicine.     

Effects of adult day care on daily stress of caregivers: a within-person approach

OBJECTIVES. This article examined exposure to and appraisal of care-related stressors associated with use of adult day services (ADS) by family caregivers of individuals with dementia. METHODS: Using a within-person withdrawal design (A-B-A-B), we compared caregivers' exposure to and appraisal of behavior problems on days their relative attended and did not attend ADS. Participants were 121 family caregivers enrolling a relative with dementia in an ADS program. Daily assessments were obtained prior to the person's attending ADS for the first time and after 1 and 2 months of attendance on days the person attended and did not attend ADS. RESULTS: Total exposure to stressors and stress appraisals decreased significantly over time on ADS days compared with non-ADS days. Most of this difference was accounted by the time the person with dementia was away from the caregiver, but there were also significant reductions in behavioral problems during the evening and improved sleep immediately following ADS use. DISCUSSION. ADS use lowered caregivers' exposure to stressors and may improve behavior and sleep for people with dementia on days they have ADS. The study highlights how a within-person design can identify the effects of an intermittent intervention, such as ADS.     

Characteristics of adult celiac disease in the USA: results of a national survey

OBJECTIVE: The clinical spectrum of adults with celiac disease in the United States, where the disease is considered rare, is not known. We sought this information by distributing a survey. METHODS: A questionnaire was distributed by way of a celiac newsletter, directly to celiac support groups, and through the Internet. RESULTS: Respondents (1,612) were from all United States except one. Seventy-five percent (1,138) were biopsy proven. Women predominated (2.9:1). The majority of respondents were diagnosed in their fourth to sixth decades. Symptoms were present a mean of 11 yr before diagnosis. Diarrhea was present in 85%. Diagnosis was considered prompt by only 52% and 31% had consulted two or more gastroenterologists. Improved quality of life after diagnosis was reported by 77%. Those diagnosed at age > or = 60 yr also reported improved quality of life. Five respondents had small intestinal malignancies (carcinoma 2, lymphoma 3) accounting for a relative risk of 300 (60-876) for the development of lymphoma and 67 (7-240) for adenocarcinoma. CONCLUSIONS: Patients with celiac disease in the United States have a long duration of symptoms and consider their diagnosis delayed. Improved quality of life after diagnosis is common. An increased risk of developing small intestine malignancies is present.