Reproduced with permission of the publisher

Bradshaw, T

Mairs, H

Richards, David

Ricks, E

Strumpher, N

Williams, N

Open Research Exeter

SCIENTIFIC LETTERS946Can community volunteers work to trace patients defaulting from scheduled psychiatric clinic appointments?David A Richards, Timothy J Bradshaw, Hilary Mairs, Essie Ricks, Johanita Strumpher, Nolan Williams, Rachel RichardsonTo the Editor: Mental illness is set to become the second largest source of economic and social burden worldwide by 2020.1 In many South African township communities, effective treatment is hampered because stretched professional staff are unable to follow up defaulting patients.2 Defaulting can have disastrous consequences for patient health, including treatment breakdown, imprisonment, death by suicide, harm to others, homelessness, relapse and re-hospitalisation.3Many countries have employed ‘assertive outreach’ workers to address the negative consequences of defaulting. These workers enable patients to remain in contact with services, resulting in enhanced treatment compliance, improved employment status and greater patient satisfaction.4 In South Africa important public policy principles such as community involvement and the role played by volunteers in supporting family members and helping patients remain in treatment5 must be incorporated into mental health assertive outreach systems, just as they have in key programmes such as directly observed treatment for tuberculosis and HIV/AIDS voluntary counselling and testing.We report the results of a study assessing the feasibility of volunteers tracing patients who had defaulted from scheduled psychiatric clinic appointments. Volunteers were trained in the main features of mental health problems and equipped with the knowledge and skills to communicate effectively with people with mental health problems.6 Training materials are available at  www.who.int/mental_health/policy/education/en. Psychiatric clinic nurses identified patients who had defaulted from scheduled appointments. Volunteers were responsible for tracing these patients and encouraging them to return to the clinic as soon as possible. Volunteers either accompanied patients to the clinic or recorded patients’ decisions on a tracing slip – whether the patient agreed to return, was untraceable, had moved away, died, was in hospital or had another outcome. Nurses recorded when patients returned to the clinic. Volunteers traced 178 (84%) of 211 defaulting patients, of whom 120 (57%) subsequently returned to the clinic. The remaining 58 traced patients included those who had died or relocated, were in hospital or prison, or were treated at home, or where contact was made with a relative or caregiver only (Table I). Volunteers contacted 98% of traceable patients within 3 days. A small number of patients were treated at home by clinic nurses who accompanied volunteers. Volunteers acted independently without professional support for 80% of visits. In 20% of cases volunteers assisted professional nurses to make contact with patients.We have shown, therefore, that volunteers can make a major impact on defaulting rates in hard-pressed psychiatric clinics, through rapid tracing of patients who default from scheduled appointments. Most of the patients who did not return had died or moved away or were in institutions, valuable information previously unknown to the nurses running clinics. Nurses reported that they valued the assistance and feedback from volunteers, enabling them to provide effective and prompt attention to patients who would ordinarily be lost to their service. Volunteers mainly acted independently and reported gaining a significant sense of recognition and self-worth from their role. They also facilitated the nurses to work more effectively within the community, with nurses reporting feeling safer when visiting patients in the presence of a community volunteer. Department of Health Sciences, University of York, UKDavid A Richards, PhD, BSc, RNRachel Richardson, MA, MBAUniversity of Manchester, UKTimothy J Bradshaw, MPhil, BSc, RGN, RMNHilary Mairs, MSc, BA, DipCOTNelson Mandela Metropolitan University, Port Elizabeth, E Cape Essie Ricks, MCur, BCurHons, RGN, RCN, RNE, RNAJohanita Strumpher, DCur, MCur, BCurHons, RGN, RM, RPN, RCN, RAdvPN Eastern Cape Department of Health, Kwazakhele Community Health Clinic, Nelson Mandela Metropole, E CapeNolan Williams, BCurHonsCorresponding author: D A Richards (dr17@york.ac.uk)Table I. Outcomes of patients in tracing programmeOutcome    N %Returned to clinic   120   56.9Relocated      22   10.4Died      14     6.6In hospital     12     5.7In prison       2     0.9Treatment given at home     6     2.8Contact with caregiver/family only    2     0.9Untraceable     33   15.7Total    211 100.0October 2007, Vol. 97, No. 10  SAMJPg 946-948.indd   946 9/18/07   10:59:03 AMSCIENTIFIC LETTERS947Nurses reported that they most valued the system when the feedback they received was prompt and consistent, and when volunteers worked regularly and were well known to the nurses. It would seem to be important, therefore, to embed a supervision, management and support system in a community-based organisation in order to ensure that volunteers continue to operate the system on a regular basis. This support could be offered by professionals and community volunteer co-ordinators working together. It is now necessary to subject volunteer mental health outreach systems that integrate community volunteer health workers into mental health care systems to rigorous evaluation. Such studies should include assessment of patients’ clinical outcomes, long-term retention in services, costs, community impact and the sustainable management of volunteer programmes.This project was supported by a grant from the British Council. We would like to thank all the community volunteers who participated in this project, especially Luvuyo Horatius Maqakaza and Awonke Nikelo, who were responsible for co-ordinating the community volunteer system.References1.  World Health Organisation. The World Health Report 2001: Mental Health: New Understanding, New Hope. Geneva: WHO, 2001. 2.  Madlala-Routledge N. Speech of the Deputy Minister of Health 2004. http://www.doh.gov.za/docs/sp/2004/sp0617.html (last accessed 20 October 2006). 3. Melzer D, Hale AS, Malik SJ, Hogman GA, Wood S. Community care for patients with schizophrenia one year after hospital discharge. BMJ 1991; 303: 1023-1026.4. Stein LL, Santos AB. Assertive Community Treatment for Persons with Severe Mental Illness.  New York: Norton, 19985. Tshabalala-Msimang M. Speech by the Minister of Health, Dr Manto Tshabalala-Misimang at the launch of the Community Health Workers Programme 2005. http://www.doh.gov.za/docs/sp/2004/sp0226.html (last accessed 20 October 2006).6. Bradshaw T, Mairs H, Richards D. Developing mental health education for health volunteers in a township in South Africa. Primary Health Care Research and Development 2006; 7: 95-105.Dandy-Walker variant in an infant prenatally exposed to antiretroviral medicationM F Urban, M F ChersichTo the Editor: We report a case of Dandy-Walker variant (DWV) in the infant of a 35-year-old woman who received treatment for human immunodeficiency virus type 1 (HIV) and tuberculosis. She received stavudine (D4T), lamivudine (3TC), nevirapine and cotrimoxazole throughout pregnancy, and isoniazid, rifampicin, pyrazinamide and ethambutol from before pregnancy until 29 weeks’ gestation, when DWV was detected on antenatal ultrasound. She had no history of genetic disorders, consanguinity, and alcohol or recreational drug use. Amniocentesis revealed a normal male karyotype. Serology for cytomegalovirus and toxoplasmosis did not indicate recent infection. The infant was full-term and appropriate for gestational age, with a normal head circumference, no dysmorphism, and no clinical features of HIV infection. Cranial ultrasound confirmed the presence of DWV and mild ventriculomegaly.  DWV is part of a continuum of rare developmental abnormalities of the posterior brain fossa. It includes cystic dilatation of the fourth ventricle and partial agenesis of the cerebellar vermis. Only in a minority of cases is there a known cause, such as a chromosome abnormality or other genetic syndrome, or teratogen – especially alcohol. The developmental mechanism is unknown but relates to abnormal hindbrain development at 7 - 8 weeks’ gestation.1 Its prognosis varies from normality to severe neurodevelopmental delay with hydrocephalus.2 The question arises as to whether the reported DWV represents a teratogenic effect of one or more of the maternal medications. We highlight deficiencies in the existing evidence.The regulatory framework for assessing drug safety has not promoted optimal collection of information on teratogenicity. The most important authority regulating registration of new drugs is the United States Food and Drug Administration (FDA), from which other national registering agencies often take a lead. The FDA provides for assessment of drugs prior to approval for marketing and for post-marketing adverse event reporting. As pregnant women are not included in human clinical trials prior to FDA approval, assessment of Division of Human Genetics, University of Cape TownM F Urban, MB BCh, FCPaed (SA), MMed (Paed), Cert (Med Genet)International Centre for Reproductive Health, Mombasa, Kenya, and University of Gent, BelgiumM F Chersich, MB BCh, MScCorresponding author: M F Urban (Mike.Urban@uct.ac.za)October 2007, Vol. 97, No. 10  SAMJPg 946-948.indd   947 9/18/07   10:59:03 AMSCIENTIFIC LETTERS948teratogenicity relies heavily on animal studies (that cannot give definitive information regarding risk in humans) and post-marketing surveillance. The post-marketing surveillance system was recently strongly criticised,3,4 particularly its over-reliance on passive surveillance and retrospective data, and poor enforcement.Teratogenicity data for antiretrovirals (ARVs) is better than for most drugs because an Antiretroviral Pregnancy Registry5 aims to obtain prospective information. Although aiming to collect data worldwide, the registry suffers from substantial under-reporting, containing only 15% of US exposures and, so far, only about 50 ARV-exposed pregnancies in South Africa. Ascertainment of birth defects is also not standardised, with varying use of diagnostic tests and level of expertise of reporting clinicians. A further problem in assessing teratogenicity data is the complexity of collecting information on drug combinations. Whether combination therapy increases the risk of birth defects is unclear, but one study has raised this possibility for the combination of ARVs and cotrimoxazole.6 Teratogenicity data collected elsewhere may not hold true for South Africans. An example of this is the unusually high rates of fetal alcohol syndrome in South Africa. This is not easily explained by alcohol consumption patterns, and aggravating factors related to poor socio-economic status have been implicated.7 Regarding ARVs, most evidence for teratogenicity exists for efavirenz, which our patient did not receive. Efavirenz is an FDA category D drug, i.e. ‘Evidence of human fetal risk exists, but benefits may outweigh risks in certain situations’,8 owing to concerns that it may cause birth defects of the central nervous system, based on animal data and four retrospective case reports, including one infant with Dandy-Walker syndrome.9-12 The magnitude of risk with first-trimester exposure to efavirenz is unknown, and the four case reports may reflect background rates of birth defects. Prospective data, collected in the Antiretroviral Pregnancy Registry, indicates that the overall increased risk for birth defects among efavirenz-exposed infants is low: the rate of birth defects among infants with first-trimester efavirenz exposure was 2.4% (6 of 225 infants; 95% CI = 0.9 - 0.1%), compared with an expected rate of 3.1% (the background rate of congenital anomalies detectable at birth).5 Our case of DWV is an infant prenatally exposed to a drug combination including ARVs, but not efavirenz. We highlight the limited nature of information available to support the fears regarding the teratogenicity of efavirenz, and the converse lack of concern regarding other combinations of ARVs and other drugs used in HIV-infected individuals. Although we support current guidelines to avoid efavirenz in reproductive-age women not using contraception,13 the evidence indicates a low risk to an inadvertently exposed fetus and does not justify pregnancy termination based on the possible risk of teratogenesis. A fetal anomaly ultrasound scan at 18 - 23 weeks’ gestation is recommended, and genetic counselling is advisable for women who are anxious or want further information. In view of the limited available information and the large numbers of reproductive-age women initiating highly active ARV therapy, there is an opportunity and a need to systematically collect local data.References  1. Ten Donkelaar HJ, Lammens M, Wesseling P, Thijssen HOM and Renier WO. Development and developmental disorders of the human cerebellum. J Neurol 2003; 250: 1026-1036.  2. Ecker JL, Shipp TD, Bromley B, Benacerraf B. The sonographic diagnosis of Dandy-Walker and Dandy-Walker variant: associated findings and outcomes. Prenat Diagn 2000; 20(4): 328-332.  3. Committee on the Assessment of the US Drug Safety System. Baciu A, Stratton K, Burke SP, eds. The Future of Drug Safety: Promoting and Protecting the Health of the Public. http://www.nap.edu/catalog/11750.html (last accessed 2 January 2007).  4. Psaty BM, Burke SP. Protecting the health of the public – Institute of Medicine regulations on drug safety. N Engl J Med 2006; 355(17): 1753-1755.   5. Antiretroviral Pregnancy Registry Steering Committee. Antiretroviral pregnancy registry international interim report for 1 January 1989 through 31 January 2006. Wilmington, NC: Registry Coordinating Center; 2006. http://www.APRegistry.com (last accessed 2 March 2007).  6. Jungmann EM, Mercey D, DeRuiter A, et al. Is first trimester exposure to the combination of antiretroviral therapy and folate antagonists a risk factor for congenital abnormalities? Sex Transm Infect 2001; 77(6): 441-443.  7. May PA, Gossage JP, White-Country M, et al. Alcohol consumption and other maternal risk factors for fetal alcohol syndrome among three distinct samples of women before, during, and after pregnancy: the risk is relative. Am J Med Genet 2004; 127C: 10-20.  8. Mofenson LM. Efavirenz reclassified as FDA pregnancy category D. AIDS Clin Care 2005; 17(2): 17.  9. Nightingale SL. From the Food and Drug Administration. JAMA 1998; 280(17): 1472.10. De Santis M, Carducci B, De Santis L, Cavaliere AF, Straface G. Periconceptional exposure to efavirenz and neural tube defects. Arch Intern Med 2002; 162(3): 355.11. Fundaro C, Genovese C, Rendeli C, Tamburrini E, Salvaggio E. Myelomeningocele in a child with intrauterine exposure to efavirenz. AIDS 2002; 16(2): 299-300.12. Saitoh A, Hull AD, Franklin P, Spector SA. Myelomeningocele in an infant with intrauterine exposure to efavirenz. J Perinatol 2005; 25(8): 555-556.13. World Health Organization. Antiretroviral drugs for treating pregnant women and preventing HIV infection in infants in resource-limited settings: towards universal access. 2006. http://www.who.int/hiv/pub/guidelines/pmtct/en/index.html"http://www.who.int/hiv/pub/guidelines/pmtct/en/index.html (last accessed 5 September 2007).October 2007, Vol. 97, No. 10  SAMJPg 946-948.indd   948 9/18/07   10:59:04 AM

Can community volunteers work to trace patients defaulting from scheduled psychiatric clinic appointments?

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