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Effects of perinatal necropsy on counselling
COMMENTARY
Effects of perinatal necropsy on counselling Accurate diagnosis is essential for the counselling of families who have experienced a perinatal loss, since the diagnosis relates not only to the cause of death, but also to recurrence risks in subsequent pregnancies. Moreover, the relevance of recurrence risks is not limited to heritable diseases but extends to disorders that might be managed differently in subsequent pregnancies, or that are unlikely to recur.1 Reports in the past year or so2,3 have reconfirmed the known inaccuracy of clinical diagnoses compared with necropsy findings in determining causes of perinatal death. Ona Faye-Peterson and colleagues2 reviewed 416 stillbirths and deaths within 48 h of birth that occurred over a 29month period from January 1992. 139 (33%) of these cases underwent necropsy. Among the 48 infants with anatomical anomalies, the diagnosis was changed or clarified in 16 (33%), additional information was obtained in two (4%), and unsuspected disorders were diagnosed in four (8%). In some of these infants the additional information would have increased estimates of the risk of recurrence in subsequent pregnancies. For example, one patient had DiGeorge syndrome, which is associated with a microdeletion of chromosome 22q11.2, and the risk of recurrence could be up to 50% if one of the parents carried the deletion.4 In others the estimate of risk of recurrence would have been reduced. For example, two infants had hydrops fetalis caused by parvovirus, hence the parents could be reassured that the disorder would be unlikely to recur. Among the 56 non-anomalous stillbirths, additional data to explain the cause of death were obtained in seven (12%). In five of these seven infants the infant was asphyxiated, which might suggest a treatable disease in the mother, or lead to more frequent monitoring in subsequent pregnancies. Among the 35 non-anomalous neonatal deaths, infectious causes of death in three infants (one with cytomegalovirus, two with Candida) would have a low probability of recurrence in subsequent pregnancies. The unexpected diagnosis of heritable disorders is not confined to stillbirths. P Barr and R Hunt3 reported on necropsies in 91 of 229 (40%) infant deaths between 1991 and 1997. The mean age at death was 20 days, but ranged up to 319 days. Clinical diagnoses were incorrect in 22% of necropsies. In 4% of necropsies unexpected genetic disorders with a recurrence risk in future pregnancies of 25% were diagnosed (one with cystic fibrosis, one with fibrochondrogenesis, two with centronuclear myopathy). Barr and Hunt also indicated that even necropsy is fallible—in two infants the heritable disorder was not diagnosed until the death of a subsequent sibling. Do bereaved parents benefit from counselling and what do they want from it? Harper and Wisian5 surveyed 37 bereaved parents (from 24 families) and found that satisfaction with the counselling was significantly improved by certain features, such as the provision by a physician of medical information, including necropsy results (which were available for 19 parents). However, the value of the necropsy to the counselling was not measured separately. There is some evidence from randomised controlled trials of the effectiveness of counselling in perinatal bereavement. Forrest and colleagues6 randomly allocated 50 families who had experienced stillbirth or neonatal death within 7 days of birth to counselling from a psychotherapist or to no counselling. At 6 months after the death significantly fewer mothers in the counselling group showed a psychiatric disorder, but there were no significant differences 14 months
THE LANCET • Vol 355 • June 17, 2000
after the death. In a study of 78 women, Lake and colleagues7 reported fewer physical symptoms associated with grief, less anger-hostility, and fewer feelings of social isolation at about 6 months postpartum in women treated by a grief-support team. By contrast, in a study of 57 couples by Lilford et colleagues,8 after 16–20 months of psychotherapy in one group there were no differences from the controls in measures of grief, anxiety, or depression. These three trials indicate that counselling may have important short-term benefits, but perhaps not longer-term ones. However, these studies were small and had relatively high losses to follow-up (approximately 50%), and none examined the impact of necropsy on the counselling process. The value of perinatal necropsy depends on the accuracy of the findings. But both perinatal mortality and necropsy rates are falling; in Victoria the number of necropsies has declined by more than 50% over a decade, from 494 in 1988, to 233 in 1997.9 Since perinatal pathologists require skills above those of other pathologists,1 perinatal necropsy might become a lost skill, in a way similar to that required for vaginal breech delivery at term. Lex W Doyle Department of Obstetrics & Gynaecology, Royal Women’s Hospital, Carlton, Victoria 3053, Australia 1 2 3 4 5 6
7 8
9
Rushton DI. Prognostic role of the perinatal postmortem. Br J Hosp Med 1994; 52: 450–54. Faye-Petersen OA, Guinn DA,Wenstrom KD.Value of perinatal autopsy. Obstet Gynecol 1999; 94: 915–20. Barr P, Hunt R. An evaluation of the autopsy following death in a Level IV neonatal intensive care unit. J Paediatr Child Health 1999; 35: 185–89. Iwarsson E, Ahrlund-Richter L, Inzunza J, et al. Preimplantation genetic diagnosis of DiGeorge syndrome. Mol Hum Reprod 1998; 4: 871–75. Harper MB,Wisian NB. Care of bereaved parents: a study of patient satisfaction. J Reprod Med 1994; 39: 80–86. Forrest GC, Standish E, Baum JD. Support after perinatal death: a study of support and counselling after perinatal bereavement. BMJ 1982; 285: 1475–79. Lake MF, Johnson TM, Murphy J, Knuppel RA. Evaluation of a perinatal grief support team. Am J Obstet Gynecol 1987; 157: 1203–06. Lilford RJ, Stratton P, Godsil S, Prasad A. A randomised trial of routine versus selective counselling in perinatal bereavement from congenital disease. Br J Obstet Gynaecol 1994; 101: 291–96. The Consultative Council on Obstetric and Paediatric Mortality and Morbidity. Annual Report for the Year 1997, incorporating the 36th Survey of Perinatal Deaths in Victoria. Melbourne, 1998.
Control of legionella in drinking-water systems Legionella pneumophila has been in the news again recently, with the outbreak of Legionnaires’ disease associated with contamination of the cooling towers of an aquarium in Melbourne1 and with the finding of the organism in humidifiers in the machine rooms at the European Parliament’s headquarters in Strasbourg.2 In fact, news of outbreaks crop up regularly because improvements in diagnostic tests have facilitated recognition of the infection. However, many if not most legionella infections originate from drinking-water systems, the most difficult of water systems in the control of legionella contamination. Such contamination of drinking-water systems in health-care facilities is common. In a national survey of US hospitals, 34% reported recovery of the bacteria from their plumbing system and 29% reported nosocomial Legionnaires’ disease.3 Legionella have been recovered from up to 100% of hospitals in a single area.4 Because of their ubiquity, the issue is not whether the bacteria are present, but whether circumstances (ie, temperature, stagnation, biofilm) favour amplification. 2093
For personal use only. Not to be reproduced without permission of The Lancet.
Effects of perinatal necropsy on counselling Accurate diagnosis is essential for the counselling of families who have experienced a perinatal loss, since the diagnosis relates not only to the cause of death, but also to recurrence risks in subsequent pregnancies. Moreover, the relevance of recurrence risks is not limited to heritable diseases but extends to disorders that might be managed differently in subsequent pregnancies, or that are unlikely to recur.1 Reports in the past year or so2,3 have reconfirmed the known inaccuracy of clinical diagnoses compared with necropsy findings in determining causes of perinatal death. Ona Faye-Peterson and colleagues2 reviewed 416 stillbirths and deaths within 48 h of birth that occurred over a 29month period from January 1992. 139 (33%) of these cases underwent necropsy. Among the 48 infants with anatomical anomalies, the diagnosis was changed or clarified in 16 (33%), additional information was obtained in two (4%), and unsuspected disorders were diagnosed in four (8%). In some of these infants the additional information would have increased estimates of the risk of recurrence in subsequent pregnancies. For example, one patient had DiGeorge syndrome, which is associated with a microdeletion of chromosome 22q11.2, and the risk of recurrence could be up to 50% if one of the parents carried the deletion.4 In others the estimate of risk of recurrence would have been reduced. For example, two infants had hydrops fetalis caused by parvovirus, hence the parents could be reassured that the disorder would be unlikely to recur. Among the 56 non-anomalous stillbirths, additional data to explain the cause of death were obtained in seven (12%). In five of these seven infants the infant was asphyxiated, which might suggest a treatable disease in the mother, or lead to more frequent monitoring in subsequent pregnancies. Among the 35 non-anomalous neonatal deaths, infectious causes of death in three infants (one with cytomegalovirus, two with Candida) would have a low probability of recurrence in subsequent pregnancies. The unexpected diagnosis of heritable disorders is not confined to stillbirths. P Barr and R Hunt3 reported on necropsies in 91 of 229 (40%) infant deaths between 1991 and 1997. The mean age at death was 20 days, but ranged up to 319 days. Clinical diagnoses were incorrect in 22% of necropsies. In 4% of necropsies unexpected genetic disorders with a recurrence risk in future pregnancies of 25% were diagnosed (one with cystic fibrosis, one with fibrochondrogenesis, two with centronuclear myopathy). Barr and Hunt also indicated that even necropsy is fallible—in two infants the heritable disorder was not diagnosed until the death of a subsequent sibling. Do bereaved parents benefit from counselling and what do they want from it? Harper and Wisian5 surveyed 37 bereaved parents (from 24 families) and found that satisfaction with the counselling was significantly improved by certain features, such as the provision by a physician of medical information, including necropsy results (which were available for 19 parents). However, the value of the necropsy to the counselling was not measured separately. There is some evidence from randomised controlled trials of the effectiveness of counselling in perinatal bereavement. Forrest and colleagues6 randomly allocated 50 families who had experienced stillbirth or neonatal death within 7 days of birth to counselling from a psychotherapist or to no counselling. At 6 months after the death significantly fewer mothers in the counselling group showed a psychiatric disorder, but there were no significant differences 14 months
THE LANCET • Vol 355 • June 17, 2000
after the death. In a study of 78 women, Lake and colleagues7 reported fewer physical symptoms associated with grief, less anger-hostility, and fewer feelings of social isolation at about 6 months postpartum in women treated by a grief-support team. By contrast, in a study of 57 couples by Lilford et colleagues,8 after 16–20 months of psychotherapy in one group there were no differences from the controls in measures of grief, anxiety, or depression. These three trials indicate that counselling may have important short-term benefits, but perhaps not longer-term ones. However, these studies were small and had relatively high losses to follow-up (approximately 50%), and none examined the impact of necropsy on the counselling process. The value of perinatal necropsy depends on the accuracy of the findings. But both perinatal mortality and necropsy rates are falling; in Victoria the number of necropsies has declined by more than 50% over a decade, from 494 in 1988, to 233 in 1997.9 Since perinatal pathologists require skills above those of other pathologists,1 perinatal necropsy might become a lost skill, in a way similar to that required for vaginal breech delivery at term. Lex W Doyle Department of Obstetrics & Gynaecology, Royal Women’s Hospital, Carlton, Victoria 3053, Australia 1 2 3 4 5 6
7 8
9
Rushton DI. Prognostic role of the perinatal postmortem. Br J Hosp Med 1994; 52: 450–54. Faye-Petersen OA, Guinn DA,Wenstrom KD.Value of perinatal autopsy. Obstet Gynecol 1999; 94: 915–20. Barr P, Hunt R. An evaluation of the autopsy following death in a Level IV neonatal intensive care unit. J Paediatr Child Health 1999; 35: 185–89. Iwarsson E, Ahrlund-Richter L, Inzunza J, et al. Preimplantation genetic diagnosis of DiGeorge syndrome. Mol Hum Reprod 1998; 4: 871–75. Harper MB,Wisian NB. Care of bereaved parents: a study of patient satisfaction. J Reprod Med 1994; 39: 80–86. Forrest GC, Standish E, Baum JD. Support after perinatal death: a study of support and counselling after perinatal bereavement. BMJ 1982; 285: 1475–79. Lake MF, Johnson TM, Murphy J, Knuppel RA. Evaluation of a perinatal grief support team. Am J Obstet Gynecol 1987; 157: 1203–06. Lilford RJ, Stratton P, Godsil S, Prasad A. A randomised trial of routine versus selective counselling in perinatal bereavement from congenital disease. Br J Obstet Gynaecol 1994; 101: 291–96. The Consultative Council on Obstetric and Paediatric Mortality and Morbidity. Annual Report for the Year 1997, incorporating the 36th Survey of Perinatal Deaths in Victoria. Melbourne, 1998.
Control of legionella in drinking-water systems Legionella pneumophila has been in the news again recently, with the outbreak of Legionnaires’ disease associated with contamination of the cooling towers of an aquarium in Melbourne1 and with the finding of the organism in humidifiers in the machine rooms at the European Parliament’s headquarters in Strasbourg.2 In fact, news of outbreaks crop up regularly because improvements in diagnostic tests have facilitated recognition of the infection. However, many if not most legionella infections originate from drinking-water systems, the most difficult of water systems in the control of legionella contamination. Such contamination of drinking-water systems in health-care facilities is common. In a national survey of US hospitals, 34% reported recovery of the bacteria from their plumbing system and 29% reported nosocomial Legionnaires’ disease.3 Legionella have been recovered from up to 100% of hospitals in a single area.4 Because of their ubiquity, the issue is not whether the bacteria are present, but whether circumstances (ie, temperature, stagnation, biofilm) favour amplification. 2093
For personal use only. Not to be reproduced without permission of The Lancet.