False-Positive Results in Neuroblastoma Screening: The Parents' View

Dobrovoljski, Gabriele; Kerbl, Reinhold; Strobl, Carola; Schwinger, Wolfgang; Dornbusch, Hans Jürgen; Lackner, Herwig

doi:10.1097/00043426-200301000-00005

Cited by 12 publications

(9 citation statements)

References 19 publications

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“…However, research that evaluated parents of infants with false out-of-range results has suggested that 5% to 20% of these parents will persist in their concerns about the health of their children for months or years after screening. [5][6][7][8][9] Therefore, PCPs should not take the event of a false out-of-range result too lightly and may wish to discuss this issue with parents on subsequent visits to provide additional reassurance and eliminate any misconceptions.…”

Section: Document False Out-of-range Results and Reassure Parentsmentioning

confidence: 99%

Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System

Edwards¹,

Bhutani²,

Botkin

et al. 2008

Pediatrics

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Advances in newborn screening technology, coupled with recent advances in the diagnosis and treatment of rare but serious congenital conditions that affect newborn infants, provide increased opportunities for positively affecting the lives of children and their families. These advantages also pose new challenges to primary care pediatricians, both educationally and in response to the management of affected infants. Primary care pediatricians require immediate access to clinical and diagnostic information and guidance and have a proactive role to play in supporting the performance of the newborn screening system. Primary care pediatricians must develop office policies and procedures to ensure that newborn screening is conducted and that results are transmitted to them in a timely fashion; they must also develop strategies to use should these systems fail. In addition, collaboration with local, state, and national partners is essential for promoting actions and policies that will optimize the function of the newborn screening systems and ensure that families receive the full benefit of them. INTRODUCTIONIt's another busy day in pediatric practice, even before you receive the telephone call from the state newborn screening program. One of your newborn patients has an out-of-range result* on the screen for a rare but serious congenital condition. "Now what?" you wonder, as you begin to take down the notes. What additional testing is needed? What is the treatment regimen, and when does it begin? What do you tell the parents? And, what do you do about the rest of your schedule?In the past decade, new technologies have led to a rapid expansion in the number of congenital conditions that are targeted in state newborn screening programs. As newborn screening programs expand, the likelihood increases that individual pediatricians will one day receive an out-of-range screening result for an unfamiliar congenital condition for one of their patients.In 2005, the American Academy of Pediatrics (AAP) endorsed a report from the American College of Medical Genetics (ACMG), which recommended that all states screen newborn infants for a core panel of 29 treatable congenital conditions and an additional 25 conditions that may be detected by screening (Appendix 1). 1 The Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC) † also adopted that report. Some states are now screening for more than 50 congenital conditions, many of which are rare and unfamiliar to pediatricians and other *A note about language: although physicians often think of screening results as being "normal/abnormal" or "negative/positive," laboratories use the more specific language of "in range" and "out of range" to report results. We felt that it was appropriate to use and promote this language for the sake of clarity and consistency. For ease of reading, we use "parent" as a generic term to connote the adult who is responsible for a child's health care; we recognize t...

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Section: Document False Out-of-range Results and Reassure Parentsmentioning

confidence: 99%

Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System

Edwards¹,

Bhutani²,

Botkin

et al. 2008

Pediatrics

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“…368 For other newborns, in whom a positive screening result is later discovered to be false, parental anxiety may also last well into the preschool years. 369 Although children may successfully regain normality after surgery, it is more likely that long periods of follow-up will define them as unwell for a large part of childhood. In addition, all future pregnancies in the family are within doubt.…”

Section: Literature Reviewmentioning

confidence: 99%

“…398 Anxiety during the screening process or experience of a false positive result does not decrease a parent's willingness to undertake screening of subsequent children. 357,358,363,368,369,373,375 However, lower support for screening is shown by parents who have experienced delay between screening and final diagnosis on a previous occasion, 385 who do not feel they were fully informed about the screening process 370,374 or whose children have been found to have a minor problems for which no intervention is needed. 358 Screening is less likely to be declined when it is offered in person or as an adjunct to routine care.…”

Section: Literature Reviewmentioning

confidence: 99%

“…419 Parents have strong shock reactions to a first positive result in newborn bloodspot screening and fears about their child's general health persist even if this is a false-positive result. 342,420,421 A high proportion of parents who experience falsepositive results on screening report significant anxiety because of the need for further investigation or hospitalisation 368,369,422 but only a small proportion report anxiety lasting long term. 368,369 These distress reactions have not been associated with poorer parent-child bonding.…”

Section: Literature Reviewmentioning

confidence: 99%

“…342,420,421 A high proportion of parents who experience falsepositive results on screening report significant anxiety because of the need for further investigation or hospitalisation 368,369,422 but only a small proportion report anxiety lasting long term. 368,369 These distress reactions have not been associated with poorer parent-child bonding. 342 Parents whose children were found to have an innocent murmur were mostly reassured and less likely to perceive their child as having a serious health problem after the diagnostic test.…”

Section: Literature Reviewmentioning

confidence: 99%

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Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Knowles¹,

Griebsch²,

Dezateux

et al. 2005

Health Technol Assess

214

143

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Neuroblastoma

Vaidya¹,

Pearson²

2010

Pediatric Hematology and Oncology

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False-Positive Results in Neuroblastoma Screening: The Parents' View

Abstract: Investigators should be aware of the psychological consequences of hospital admission for tumor screening in children. In ongoing neuroblastoma screening studies, laboratory methods as well as cutoff limits should be selected carefully.

Cited by 12 publications

References 19 publications

Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System

Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System

Newborn screening for congenital heart defects: a systematic review and cost-effectiveness analysis

Neuroblastoma

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