Burden and cost of inpatient care for HIV-positive paediatric patients--status in the Cape Town metropole during the second week of March 1999. Paediatric HIV Census Group.

OBJECTIVE: To determine the burden of the HIV epidemic on paediatric inpatient facilities in the teaching hospitals of the Cape metropole and tributaries to these hospitals. SETTING: Second- and third-level hospitals. METHOD: During the second week of March 1999 a multicentre collaborative census was performed of all paediatric beds in the teaching hospitals of Cape Town and all facilities draining to and from them. RESULTS: One hundred and six HIV-infected patients were identified from a total of 1,264 beds. Thirty-nine children were in second-level beds or in a long-term residential facility. Fifty-six children were in second-level beds designated for acute care, and occupied 12% of all such beds. Ten children were in beds designated for the care of tuberculosis. Thirty-two (56%) of the acute admissions were for gastro-enteritis, and 13 (23%) were for pneumonia. In 10 children (18% of all admissions) recognised complications of HIV infection were direct causes of admission. For 29 children (35% of all admissions) the current admission was the first; the remainder had had a mean of 2.4 previous admissions. Fourteen children (25%) had received oxygen, and 26 (46%) had received intravenous therapy. Mean lifetime hospitalisation cost per infected child was calculated to be R19,712. The projected cost of a local initiative to reduce mother-to-child transmission is between R8,326 and R10,806 per vertical infection prevented. CONCLUSION: The inpatient burden of HIV-infected children in Cape Town reflects an early stage of the epidemic. Compared with projected lifetime hospitalisation cost for infected children, an intervention to reduce vertical transmission cost would be cost effective.

A home visit programme to teach medical students about children with special needs.

OBJECTIVES: During an 8-week clinical rotation in paediatrics and child health, fifth-year medical students at the University of Cape Town are required to visit children with special needs in their homes. The home visit allows students to learn, first-hand, from children with special needs and their families about living with chronic disease and disability. DESIGN: During 1998 students anonymously completed home visit evaluation questionnaires (90% response rate, 160/177). Through verbal presentations, students are assessed on their ability to make a comprehensive evaluation of the impact of chronic disease and disability on a child and family. SETTING: University of Cape Town Medical School. SUBJECTS: Fifth-year medical students. RESULTS: A content analysis of verbal presentations found students were more likely to identify medical, psychosocial and economic than spiritual and ethical issues. As a learning experience, 37% (n=57) of students rated the home visit as 'extremely worthwhile', 62% (n=100) found it 'worthwhile' and only 2% (n=3) felt it was 'a waste of time'. Most (97%, n=155) students felt the programme should continue in the future. CONCLUSIONS: As an educational tool, home visiting grounds learning in families' experience and encourages reflection beyond the medical aspects of care for children with special needs.

Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives.

OBJECTIVES: To gauge the perspectives of adolescents and adults with cystic fibrosis (CF) and their parents regarding the transition from paediatric to adult-oriented health care. METHODS: Cross-sectional survey using an anonymous, semi-structured questionnaire. The study population consisted of adolescents and adults attending a paediatric and an adult CF clinic in Cape Town, South Africa and their parents. RESULTS: Forty-seven of the 61 subjects completed the questionnaire (response rate 77%). Autonomy in health care was 'extremely important' to most persons with CF. Transfer at the age of 16-18 years of age was the preferred option for most respondents. Whereas over 80% of parents felt their children needed more CF-related information, only 38% of adolescents expressed this need (P < 0.05). Adolescents also reported little need for general health information. More than 80% of respondents were 'unsure' about transfer. Over 90% felt that a transition clinic would be useful. As viewed by the respondents, its main purpose would be to provide information about the adult clinic and an opportunity to meet the CF doctor in the adult clinic. CONCLUSION: There are significant concerns about the transition process in this population. Given the expressed need for autonomy and a transition clinic, the basis for a smoother transition in the future has been laid.

Equitable rationing of highly specialised health care services for children: a perspective from South Africa.

The principles of equality and equity, respectively in the Bill of Rights and the white paper on health, provide the moral and legal foundations for future health care for children in South Africa. However, given extreme health care need and scarce resources, the government faces formidable obstacles if it hopes to achieve a just allocation of public health care resources, especially among children in need of highly specialised health care. In this regard, there is a dearth of moral analysis which is practically useful in the South African situation. We offer a set of moral considerations to guide the macro-allocation of highly specialised public health care services among South Africa's children. We also mention moral considerations which should inform micro-allocation.

Tensions in setting health care priorities for South Africa's children.

The new South African constitution commits the government to guarantee "basic health services" for every child under 18. Primary health care for pregnant women and children under six and elements of essential primary health care have received priority. At present, there is little analysis of the moral considerations involved in making choices about more advanced or costly health care which may, arguably, also be "basic". This paper illustrates some of the tensions in setting priorities for a just macro-allocation of children's health care, given the realities of need and scarce resources, and the commitment to equality of basic opportunities.

An evaluation of parental knowledge of childhood asthma in a family practice setting.

STUDY OBJECTIVE: To measure and evaluate parental knowledge of and misconceptions with regard to childhood asthma and its treatment. DESIGN: A cross-sectional, descriptive survey. SETTING: A family practice in Mandalay, Mitchell's Plain, on the Cape Flats. PARTICIPANTS: The sample comprised all parents (N = 105) with an asthmatic child aged between 2 and 18 years attending the practice. The response rate was 95.2%. OUTCOME MEASURES: A semi-structured questionnaire which included a 55-item psychometrically validated asthma knowledge test. RESULTS: An average score of 72% was achieved. Parents were most knowledgeable about aetiology, symptomatology, pathophysiology, precipitants and environmental control. They were less informed about asthma therapy, asthma prognosis and general medical knowledge. In addition, numerous misconceptions were identified, which together with the knowledge deficiencies, could lead to inadvertent non-compliance. Parental concerns centred predominantly on their lack of confidence to manage acute asthma attacks, and fears about asthma prognosis. CONCLUSION: The study underscores the need for systematic asthma education, especially with regard to acute attack management and preventive medications. In addition, parents must acquire confidence and practical skills to cope with acute attacks.

Informed consent--a survey of doctors' practices in South Africa.

OBJECTIVE: To examine doctors' practices with regard to informed consent. DESIGN: Cross-sectional, descriptive survey. PARTICIPANTS AND SETTING: All full-time consultants and registrars in the Departments of Medicine, Obstetrics and Gynaecology, Paediatrics and Child Health, Paediatric Surgery and Surgery at the University of Cape Town were included. The overall response rate was 63% (160/254). MEASUREMENT: Data were collected by means of self-administered, semi-structured questionnaires. RESULTS: Most doctors (79%) felt it was their responsibility to ensure that patients and parents were fully informed about diagnostic and therapeutic interventions. Many (62%) supported a patient-centred standard for determining the type and amount of information to disclose. Doctors disclose most of the legally required information except for information about alternative forms of treatment and remote serious risks. They almost never provide information on medical costs. The most common reasons for not obtaining informed consent were the doctors' tendency to 'tell' patients/parents what they intend doing and their belief that patients/parents expect doctors to know what is medically best for them. Language, inadequate communication skills and lack of time were, surprisingly, seldom viewed as obstacles to the obtaining of informed consent. Findings were independent of discipline (medical or surgical) and doctors' status (consultant or registrar). Doctors who treat children were significantly less likely to obtain consent for certain interventions. CONCLUSION: Doctors meet many, but not all, of the legal requirements for informed consent. The findings question whether informed consent as envisioned by the law exists in reality. Cross-cultural research is needed to clarify patients' and parents' expectations of informed consent.

Pulmonary lymphangioleiomyomatosis associated with pulmonary parenchymal, hilar, and mediastinal noncaseating granulomas.

A young nonsmoking woman presented with severe dyspnea, exercise desaturation, and chest discomfort. Pathologic and histochemical findings revealed pulmonary lymphangioleiomyomatosis (LAM) as the primary abnormality. In addition, there were multiple noncaseating granulomas with special stains and cultures negative for organisms. This highly unusual combination of pathologic findings might suggest the presence of coexistent sarcoidosis in our patient with LAM.

Bed use in the medical wards of Red Cross War Memorial Children's Hospital, Cape Town.

OBJECTIVE: To determine extent of appropriate (medically necessary) and inappropriate bed use and level of care (LOC) needed by patients admitted to hospital. DESIGN: A cross-sectional, descriptive survey. SETTING: Medical wards of Red Cross War Memorial Children's Hospital (RCCH), a teaching hospital of the University of Cape Town. MEASUREMENT AND RESULTS: A 25% sample of beds was selected randomly each day for 12 consecutive days during September-October 1990. Data were collected using a questionnaire based on the Pediatric Appropriateness Evaluation Protocol and the Delay Tool. A subjective measure of LOC was developed. Questionnaires were completed for 171 admissions and 365 patient days; 98% of admissions and 79.5% of patient days were medically justified, and 49% of admissions needed tertiary care. The remaining 51% could have been treated by general paediatricians (17%) or medical officers (32%) in community hospitals. Of delays (unnecessary patient days) 62% were hospital-related, 20% were family-related and 18% were related to inadequate lower level institutional care and outpatient services. CONCLUSION: RCCH is functioning as a general, specialist and super-specialist hospital. Its future role as a tertiary referral centre will depend on adequate provision of community-based care. Further cost-benefit research is needed to address areas of inappropriate bed use identified in this study.

Medical manpower--South African situation models for planning and recommendations.

Imbalances in medical manpower in South Africa are outlined. Theoretical publications on health manpower development are reviewed, with particular reference to factors and problems to be considered when estimating health manpower needs. Four models (health demand, health needs, service target and manpower/population ratio) of health manpower planning are described and their applicability to the South African situation is discussed. Recommendations for health manpower development in South Africa, especially for primary health care, are made.

Errors, gaps, and misconceptions in the disease-related knowledge of cystic fibrosis patients and their families.

A cross-sectional survey was conducted among 60 families with a child with cystic fibrosis to assess their medical knowledge of the illness. A 63-item, multiple-choice test with acceptable psychometric properties was administered to 60 mothers, 54 fathers, 29 siblings (aged 10 to 23 years), and 18 patients (aged 9 to 22 years). Parents and patients correctly answered approximately three quarters and siblings two thirds of all items. Family members were most knowledgeable about general cystic fibrosis facts, physiotherapy, gastrointestinal symptomatology and treatment, and anatomy. They were less well-informed about respiratory symptomatology and treatment and nutrition. Parental knowledge of genetics and reproductive risks was mediocre, and that of patients and siblings was poor. Knowledge of terminology was uniformly low. Social class was a significant predictor of parental knowledge. If left uncorrected the misconceptions, gaps, and errors in family members' knowledge of cystic fibrosis identified in this study could result in inadverent noncompliance in treatment of the patient.

Global and specific disease-related information needs of cystic fibrosis patients and their families.

A cross-sectional survey of 60 families with a child with cystic fibrosis was undertaken to assess how much family members wanted to be told about the illness, to determine specific information needs concerning selected medical and psychosocial topics, and to determine whether this information had been provided in the past. Self-administered index measures were designed for this purpose. Most family members wanted complete and comprehensive information about cystic fibrosis. A minority of family members claimed they had not received basic medical information. Fathers and siblings wanted more medical information than mothers and patients. The majority of parents and patients wanted a great deal more information on the possible effects of cystic fibrosis on the patient's career, social life, marriage, and reproductive capacity. In general, family members had been given more medical than psychosocial information. Index measures were independent of the effects of patients' age, Shwachman score, and period since diagnosis. Social class was significantly associated with fathers' index measures of their specific information needs and information not given previously.

Direct immunoprecipitation of protein.

Many biochemical experiments depend on the measurement of the amount of an enzyme (or other protein) independently of any enzymatic activity it may have. When working with cell-free extracts or other complex mixtures this is not simple to do, and most procedures that have general application involve the use of antibodies. Two distinct strategies have been used to good effect. The amount of antibody bound can be made to reflect amount of antigen, as in an ELISA assay (ref. 1 and Vol. 1 of this series) or in a "Western blot" (ref. 2 and Chapters 28 and 29 in this volume). Alternatively, the antibody can be used effectively to purify the antigen protein. The method described here is of the latter sort and has advantages of simplicity and rapidity both over ELISA and blotting techniques, on the one hand, and indirect precipitation techniques on the other.

Isoelectric focusing under denaturing conditions.

The introduction of methods for the electrophoretic analysis of proteins under denaturing conditions (1,2) is something of a landmark in the development of methodologies for the analysis of proteins. Not only was analysis giving good correlation to molecular weight possible with small samples of complex mixtures of proteins, but in addition, analysis of normally insoluble proteins became possible in a relatively simple manner. These methods were based on solubilizing protein in sodium dodecyl sulfate (SDS) such that the intrinsic charge differences between proteins were overwhelmed by the relatively strong charge of the dodecyl sulfate ion, which resulted in very good correlation (for most, but not all, proteins) between electrophoretic mobility and molecular weight (see Chapter 6 in Vol. 1 of this series).

Curium excretion studies in man and baboon: a predictive animal model.

A major rationale for performing metabolic research in laboratory animals is to obtain useful information which is applicable to man. Since it is usually impossible to determine many of the kinetic parameters which are responsible for the fate of a contaminant in inadvertently-exposed individuals, it is essential that well-controlled laboratory experimentation in animals be performed. In the present case, we will demonstrate how our experimental protocol, i.e. curium in the adult baboon, can provide a model from which to derive important characteristics of curium in man. To accomplish this goal, we have compared the retention and excretion patterns of curium in several men accidentally exposed via inhalation, burns, or puncture wounds with that of 243,244Cm citrate injected i.v. in nine adult baboons. Although many of the exposure conditions are different in considering the two primate species (human and non-human), biokinetic research in the baboon may serve to estimate tissue burdens and dose commitments in man. Comparison of the excretion rates of the nuclide in the urine of man and the baboon gives similar half times between days 10 and 50 post exposure.