SIDS RESEARCH, PART III:
SPECIAL PROJECTS OF REGIONAL AND NATIONAL SIGNIFICANCE (SPRANS)

-reprinted with permission from the Information Exchange the newsletter of the National SIDS Resource Center

The best hope for eliminating SIDS lies in discovering its cause. For this reason, research is crucial. Part I summarizes the various components of the overall research effort, explains prevailing theories, and explores the issue of risk factors. Part 2 of the article describes specific new avenues of inquiry, focusing on the research of the National Institute on Child Health and Human Development (NICHD). Part 3 completes the series with highlights of the SIDS-related projects funded as Special Projects of Regional and National Significance (SPRANS) by the Maternal and Child Health Bureau (MCHB).

MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT.

The Omnibus Budget Reconciliation Act of 1981, Public Law (PL) 97-35, amended Title V of the Social Security Act for a Maternal and Child (MCH) Services Block Grant, thus enabling the States to maintain and strengthen their leadership in planning, promoting and coordinating health care services for mothers and children and to support health care services for those who do not have access to quality maternal and child health care. SIDS services were included in the block grant program, with the level and focus of such services to be determined by the States. Eighty-five percent of the basic MCH Services Block Grant funds are allocated for the States' core services and programs for mothers and children, known as the Consolidated State Programs.

The remaining 15 percent has been set aside to fund SPRANS. These projects include training; research; genetic disease screening, testing, and referral; hemophilia diagnosis and treatment; and maternal and child health improvement projects (MCHIP). SPRANS projects demonstrate and test various protocols for improving the health of mothers, infants, children, adolescents, and children with special health care needs; these programs also study ways to improve access to and delivery of quality maternal and child health care. SPRANS projects must support national needs and priorities, be of regional and national significance, and improve State systems of health care for mothers and children. Information and data generated from SPRANS projects are used in the planning, development, and implementation of maternal and child health services.

Products, practices, innovations, and information are shared with national, State, and local agencies and professionals. Through SPRANS, the MCHB supports projects and provides research grants that are intended to develop new knowledge to the health problems of mothers, children, and children with special health care needs. The training or continuing education grants foster leadership skill-building in a variety of specialized health professions, as well as interdisciplinary training required to provide comprehensive maternal and child health care; offer specialized clinical or laboratory training and services not routinely available; incorporate professional consultation and technical assistance as part of training activities; and focus on upgrading skills and competencies of State and local MCH personnel.

MCHIP grants support projects that demonstrate how State and local agencies and organizations can creatively modify their health care systems to improve the health status of mothers and children within their service areas. MCHIP projects develop systems to gather, analyze, disseminate, and store data and information for use by any sector of the MCH community. Part III of this series of articles highlights nine SPRANS projects. These sample projects, covering 1981 to 1993, were chosen because of their relevance to SIDS and related issues such as infant mortality, postneonatal mortality, and grief involved with infant loss. Each project description includes the title, recipient of the grant, the project director(s) or principal investigator, the time period for the project, and a brief summary.

References for publications resulting from the projects are listed where available. Most of the information in the summaries was obtained from the National Center for Education in Maternal and Child Health's (NCEMCH) database of SPRANS projects and from other MCHB publications.

SIDS Loss:Psychosocial Impact and Predictors of Coping
Research Center for Group Dynamics
Camille B. Wortman, Phd., and Roxane L. Silver, Phd.
9/l/81 - 8/31/86

In a longitudinal study of 124 parents interviewed at 1 month, 3 months, and 18 months following the loss of their infant, Drs. Camille Wortman and Roxane Silver assessed the psychosocial impact (i.e., emotional and psychological responses to the loss and their changes over time) of the loss of an infant to SIDS and identified predictors of successful adjustment to such a loss.

The parents were questioned concerning their emotional reactions, attributions of blame, ability to find meaning in their loss, perceived social support, and their coping strategies at each point in time. The questions were designed to assess various indicators of coping and adjustment including physical, mental, and social health and general well-being.

In their final report to the MCHB, Drs. Wortman and Silver summarized their findings as follows: Parents reported a considerable variability in response to loss; some experienced significant distress while others displayed few signs of depression immediately after the baby's death or over time.

There was no evidence that individuals follow set patterns or stages of emotional response following loss; a variety of positive and negative emotions were very prevalent among SIDS parents and were often experienced simultaneously, even in the first weeks after the loss.

Failure to experience significant distress following a SIDS loss does not necessarily indicate there is a problem in the way the parents are grieving.

Those parents with the most distress 3 weeks post loss were the ones who continued to show adjustment problems at the 18 month interview.

Additional References:
Wortman, C. and Silver, R. SIDS Loss: Psychosocial Impact and Predictors of Coping. Final Report, April 1989. Available for purchase from the National Technical Information Service, US Department of Commerce, Springfield, VA 22161, (703)487-4650, Publication No. PB89-230775.

Wortman, C.B. and Silver, R.C." The Myths of Coping with Loss". Journal of Consulting and Clinical Psychology.57(3):349-357,1989. Downey;Silver,R.C.;Wortman,C.B."Reconsidering the Attribution-Adjustment Relation Following a Major Negative Event: Coping With the Loss of a Child. "Journal of Personality and Social Psychology 59(5):925-940,1990.

West Virginia Statewide SIDS Prevention Project
West Virginia University
David Z.Myerberg, MD
9/1/84 - 8/31/88

This project, based on studies in England and the United States indicating that better general health care for at-risk infants could reduce the number of postneonatal deaths, including SIDS, was designed to identify infants in West Virginia at risk for postneonatal death.

Birthing hospitals in West Virginia used an eight-factor birth scoring system for approximately 75 percent of all births and the information was entered into a database.

Those infants with the highest scores were referred to primary care physicians for extensive surveillance. Physicians returned data from the 7-month surveillance period for each infant. A committee of neonatologists designed the Protocol for Evaluation of Infants Considered for Home Monitoring for use by physicians caring for infants considered for home monitoring, including siblings of SIDS infants, a surviving twin of a SIDS infant, infants with apparent life-threatening events, and premature infants with apparent life-threatening events.

The study description and results of the birth scoring portion of the West Virginia project are contained in the West Virginia Statewide SIDS Prevention Project Final Report soon to be available for purchase from the National Technical Information Service,US Department of Commerce, Springfield, VA 22161,(703)487-4650.

Since 1988, the State health department has continued to support the project, now called the West Virginia Birth Scoring System. The system was expanded so that high-risk infants could be referred to the public health nursing case management program. The University of West Virginia now provides evaluation of infants with apparent life threatening events and apnea. The University also established statewide recommendations for standards of care for infants considered for home monitoring.

Identification of Risk for SIDS: Subsequent Siblings
American SIDS Institute
Alfred Steinschneider,MD
4/1/85 - 3/31/90

This study of subsequent siblings of infants who died from SIDS evaluated the effectiveness of neonatal measures of respiratory instability obtained during feeding and sleep, measures of passive muscle tone, and identified infants at risk for prolonged apnea (no respiratory activity for longer than 18 seconds) or bradycardia (sudden drop in heart rate to below 80 beats per minute for 5 beats or more). Preliminary findings from this project indicate that by observing the physiology of feeding and sleep, and assessing muscle tone, under carefully controlled conditions, researchers can establish valid criteria for the early identification of subsequent siblings who would benefit from home monitoring.

Approximately 400 subsequent siblings in Portland, Oregon and Atlanta, Georgia were observed during activities such as sucking, feeding, and sleeping. Additional data were collected on muscle tone during quiet and alert states. All infants were maintained on a home monitoring system for at least 6 months as well as tested in the laboratory. Nurses contacted parents weekly to discuss the baby's status.

Data analyzing 100 subsequent siblings after their first diphtheria-tetanus-pertussis (DTP) immunizations failed to confirm that DTP immunizations are associated with an increased frequency and severity of prolonged apnea. Findings from this study do not support discontinuing home monitoring based on an infant's response to the DTP immunization or using that response as determinant of continued risk of apnea and bradycardia.

Data were also obtained from 155 subsequent siblings followed at home who were on an apnea/bradycardia monitor with an attached event recorder. In addition to the electronic recordings, reports from parents about observed cardiorespiratory problems (e.g., if the baby appeared to stop breathing, exhibited a change in skin color or tone, or if the parents had to stimulate the baby to breathe) were compared to cardiorespiratory activities recorded from monitor alarms. Results from detailed reports and comparisons indicate that when using home monitors in the clinical management of at-risk infants, the electronic event recordings are needed to supplement parents' observations.

Additional References:
Steinschneider,A.;Freed,G.;Rhetta-Smith,A.;Santos,V.R. "Effects of Diphtheria-Tetanus-Pertussis Immunization on Prolonged Apnea or Bradycardia in Siblings of Sudden Infant Death Syndrome Victims."Journal of Pediatrics 119(3):411-414, September 1991.

Steinschneider,A. and Santos,V.R. "Parental Reports of Apnea and Bradycardia: Temporal Characteristics and Accuracy." Pediatrics 88(6):1100-105.

Model Intervention Program for Survivors of the Sudden Death of a Child: A Program to Prevent the Complications of Abnormal Grief
University of New Mexico School of Medicine
Beverly White, RN, MS
10/1/85 - 6/30/89

Based on the New Mexico SIDS Information and Counseling Program, this project developed and conducted an intervention program to assist families through the grief process after losing a child suddenly and unexpectedly, thus, hopefully preventing events such as illness, suicide, divorce, and substance abuse often associated with abnormal grief. A model program was developed to educate professionals and the public about death and bereavement; to emphasize the need for an autopsy and the provision of prompt, competent service; to notify parents of autopsy results within 24 hours; to counsel the immediate family and interested others as soon after the death as possible; to promote professional and community endorsement of the project; and, to work with existing parent support groups.

In a series of workshops, project staff trained volunteers in crisis counseling in the event of sudden and unexpected death among children and adolescents younger than 18 years of age. As part of the Office of the Medical Investigator, the project staff also worked with professionals and the community in responding to sudden and unexpected child deaths. When this type of death occurred, the local medical investigator examined the scene and collected information based on an established investigative protocol. As part of the crisis counseling, the family received referral information to a local counselor as well as a personal letter and information about bereavement support. After microbiological and histological examinations were completed, the family was invited to meet with the pathologist.

As a result of this project, professionals and lay persons of diverse cultures and socioeconomic backgrounds have mobilized into a voluntary support team. Procedures for notifying the family of the pathological findings as well as providing information and assistance are now well-established.

Renamed the New Mexico Grief Intervention Program (NMGIP), the project is currently supported by the State to provide crisis intervention and education free of charge to those families residing in New Mexico who have experienced the sudden and unexpected death of a child aged 0 to 18 years old. In 1991, NMGIP provided crisis intervention and grief management to 438 families. Project staff and volunteers offered support by mail, telephone, and/or in person to a total of 3,297 contacts. In addition, 131 education sessions reached approximately 1,486 professionals and other individuals.

Race and Risk for SIDS
American SIDS Institute
Philip Spiers, Phd
11/1/86 - 10/31/87

This project studied the increased risk for SIDS among certain racial and ethnic minorities. Among blacks and Native Americans, the incidence of SIDS is almost twice that compared to the white population. There is also higher prevalence of maternal and infant characteristics associated with SIDS in blacks and Native Americans. The project examined the birth and death records of infants in North Carolina, Oklahoma, and Oregon who died from SIDS during 1975-1982. SIDS cases were determined by selected code numbers from the International Classification of Diseases provided on the death certificates. Analysis of study results examine the differences in findings among the three States targeted. The study description and results are available in a final report of the project which may be obtained from the National Technical Information Service, US Department of Commerce, Springfield, VA 22161,(703)487-4650, Publication No. PB89-218614.

Oregon SIDS Prevention Project
Oregon Department of Human Resources
Grant Higginson, MD
10/1/89 - 9/30/92

This demonstration project is working to reduce Oregon's postneonatal deaths, including those from SIDS, by identifying infants at higher risk for postneonatal death and providing intensive nursing intervention.

The Health Division, Oregon Department of Human Resources, developed a risk-screening tool for use with an established system of newborn screening in Marion County. Based on the literature and input from a physician advisory board, point values were assigned to past health history, socioeconomic status, prenatal history, immediate postpartum medical history, and other medical factors.

Local public health nurses screen and identify high-risk infants for SIDS. Nurses also provide supportive services, such as teaching selected parenting skills thought to be associated with the prevention of postneonatal deaths, to families of these high-risk infants. Although certain health-related factors appear to be associated with increased risk for SIDS, preliminary findings from this study do not indicate that any one health risk factor or behavior is clearly identified as causing SIDS. However, intensive public health nursing care may lead to improved health care practices and eventually translate into fewer postneonatal deaths.

Center for Inherited Disorders of Energy Metabolism
Case Western Reserve University School of Medicine
Douglas S. Kerr, MD, Phd
10/1/88- 6/30/93

Sudden infant deaths, some possibly diagnosed as SIDS, may be associated with a group of inherited diseases of energy metabolism. The underlying defects may interfere specifically with oxidation of carbohydrates or fat, or more generally, with all energy producing fuels (pyruvate and fatty acid oxidation, Krebs cycle, and electron transport chain).

The Center for Inherited Disorders of Energy Metabolism is addressing the need for advanced professional training and clinical and diagnostic services for evaluating and treating infants and children with diseases causing metabolic disorders. The program provides advanced training to professionals interested in inherited disorders, offers comprehensive biochemical laboratory diagnostic services for patients affected by disorders of energy metabolism, educates practitioners about how to recognize and treat these disorders, and facilitates independently supported research to improve future diagnosis and treatment of these conditions.

Center faculty have organized and are presenting continuing medical education programs on clinical and scientific aspects of disorders of pyruvate metabolism, fatty acid oxidation, the electron transport chain, and specific disease conditions associated with these disorders.

Nationwide Assessment of SIDS Services
University of Rochester School of Medicine and Dentistry
John G. Brooks, MD
l0/1/91 - 9/31/92

This nationwide assessment of SIDS services will identify the number of SIDS deaths; the actual and legally mandated procedures for diagnosing SIDS; the availability of information, education, counseling, and management services to families and communities; types of service providers; utilization patterns for these services; and reasons for non availability of services. The study also proposes to determine the availability of SIDS education programs and services for health professionals and emergency medical personnel.

A questionnaire has been developed for distribution to five target populations: State MCH Directors, State medical examiners or coroners, Director of Vital Statistics Offices, SIDS peer support groups, and State SIDS Program Coordinators. Data will also be collected from a random sample of SIDS infants studied in the 1988 National Maternal and Infant Health Survey (NMIHS). A summary of the status of SIDS services in the United States will be produced upon completion of the project.

National Fetal-Infant Mortality Review Program
American College of Obstetricians and Gynecologists (ACOG)
Louise Wulff, Sc.D
6/1/90 - 5/31/93

Since its inception in 1990, the National Fetal-Infant Mortality Review (NFlMR) Program, a mortality review initiative of the American College of Obstetricians and Gynecologists (ACOG), has developed a partnership of the private and public sectors to provide a comprehensive approach to understanding and combating fetal and infant mortality nationwide through case by case reviews of fetal and infant deaths.

A steering committee of representatives from 12 medical and health organizations has furnished guidance and technical assistance. Additional support and funding are being provided by MCHN, the March of Dimes Birth Defects Foundation, the ACOG Development Committee, Carnation Nutritional Products, and the Centers for Disease Control, thus enabling the NFIMR Program to construct a strong foundation of community based initiatives from which a technical assistance model can be developed. The NFIMR Program will stimulate and support the development of community based fetal and infant mortality review groups; offer a technical assistance program; and provide an information/resource center to gather information on fetal and infant mortality and mortality review as well as respond to users' inquiries.

Alamenda and Contra Costa Counties, California; San Bernardino, California; Southwest Georgia; Springfield, Massachusetts; Battle Creek, Michigan; Saginaw County, Michigan; and three perinatal councils in West Virginia were selected in May 1991 to develop fetal and infant mortality review systems under 3-year grants from the NFIMR. Each of these communities reports infant mortality rates greater than the U.S. 1990 goal of 9.0 deaths per 1,000 live births as defined in Health Objectives 1990. Each project site has demonstrated local professional support, community consensus of assessment of need, and commitment of community resources to mortality review activities. The NFIMR Technical Assistance Program developed a comprehensive manual of technical materials and guidelines on various aspects of mortality review entitled: A Manual for Fetal and Infant Mortality Review. Copies are available from the NFIMR Information Resource Center at $25.00 per copy to cover printing and distribution costs.

For further information on the NFIMR Program please contact Elaine Garber, Information Assistant, NFIMR Program, 409 12th Street, SW, Washington, DC 20024-2188; 202-863-2489.