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Breaking difficult news in a newborn setting Down syndrome as a paradigm.

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American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 142C:173 – 179 (2006)
Breaking Difficult News in a Newborn Setting:
Down Syndrome as a Paradigm
Breaking the difficult news of an unexpected diagnosis to parents in the newborn setting is a common occurrence
in genetic counseling. Many clinical geneticists and genetic counselors have had the challenge of delivering a
postnatal diagnosis of Down syndrome to parents of newborns. Down syndrome is a common chromosome
condition occurring in approximately 1 in 800 live births. Presenting the diagnosis to families must be
accomplished in a supportive, positive, caring, and honest manner. However, there are few scientific data and
little instruction in training programs on how best to convey this news in an appropriate manner. Several articles in
the literature over the last three decades have proposed various guidelines for the so-called informing interview.
Discussions of parents’ preferences and experiences in receiving this news have also been documented. Few
reports, however, have focused on breaking difficult news of the diagnosis of a genetic condition to parents in a
newborn setting in the genetics literature. In this paper, we will review the medical literature on delivering difficult
news, specifically focused on that regarding the diagnosis of Down syndrome in the newborn setting. We propose
a theoretical framework from which the informing interview can be planned and future outcome data
can be measured. In this way, researchers of this theme can investigate the process, including the
healthcare professionals’ delivery of difficult news and make recommendations for continued improvement of
the process. Our model can be generalized to breaking difficult news for a variety of other congenital
conditions. ß 2006 Wiley-Liss, Inc.,
KEY WORDS: breaking bad news; communication; Down syndrome; theoretical model
How to cite this article: Dent KM, Carey JC. 2006. Breaking difficult news in a newborn setting: Down
syndrome as a paradigm. Am J Med Genet Part C Semin Med Genet 142C:173–179.
‘‘Let not your ears
despise my tongue forever,
which shall possess them
with the heaviest sound
that ever yet they heard.’’
—Macbeth, Act IV, Sc.3,
In this captivating lyric, William Shakespeare included two important themes
encompassed in the challenge for the
health professional in the delivery of
difficult news: the idea of the ‘‘warning
shot’’ and the concern regarding the
‘‘messenger.’’ Ideally, we as healthcare
professionals can do as well in our choice
of words and language. The following
vignette represents a personal narrative
that defined the senior author’s longstanding interest in the topic of the
informing interview, that is, the socalled breaking of difficult (‘‘bad’’) news.
‘‘It was July 1st; only a few days before
I had been an intern, today I was a
‘resident.’ For this reason, the nursing
Karin M. Dent, M.S., LGC, is a certified genetic counselor specializing in pediatrics. She
currently provides genetic counseling in the Medical Genetics and Neurofibromatosis clinics and
in the Congenital Hearing Loss research clinic at the University of Utah Medical Center. Her
research interests include genetic counseling for dystrophinopathies and the etiology of
congenital hearing loss. She is a faculty member and co-course director in the new University
of Utah Graduate Program in Genetic Counseling.
John C. Carey, M.D., MPH is a Professor and Vice-chair in the Department of Pediatrics at the
University of Utah Medical Center. He has a career long interest in the theme of delivering difficult
news to families. Currently he is principal investigator on the Utah Hearing Loss Etiology project
and is Editor in Chief of the American Journal of Medical Genetics.
*Correspondence to: John C. Carey, University of Utah Department of Pediatrics, Division of
Medical Genetics, Salt Lake City, UT 84132. E-mail:
DOI 10.1002/ajmg.c.30100
ß 2006 Wiley-Liss, Inc.
staff of the Newborn Intensive Care
Nursery treated me differently; just a
week or so before, they would consult
the resident on real questions about
patient care, now they called me. On
this particular morning—my first day
in the NICU—I was greeted on
rounds by the announcement that a
newborn infant, presumably with
Down syndrome, had been born in
the Well Baby Nursery. In those days,
the pediatric residents who covered
the sick and premature babies in the
NICU would also care for the occasional problem that arose in the Well
Nursery. As my colleagues and I
proceeded to make rounds discussing
the day’s care on the many ill infants
on ventilators, my mind wandered to
what I perceived as an anxietyproducing challenge: I had never
been the one to present to a family
the information on what I considered to be an overwhelming
and serious diagnosis. In fact, I
recollect being reasonably distracted
during rounds by the upcoming
event. An hour or so later after
reviewing the progress and lab values
of the two dozen or more babies in the
NICU, I left my group to perform my
assigned task. The senior resident and
attending indicated confidence in my
being able to discuss the working
diagnosis with the family. As I walked
from the NICU to the Well Baby side,
I had the sense of being unprepared;
yes, I was ready to take care of the baby
with cyanosis or hyperbilirubinemia,
but this was a novel challenge.
I have only vague memories of
walking in the room and exactly
how I introduced myself to the family
of this 12-hr-old infant with presumed Down syndrome. My own
cursory examination confirmed the
clinical suspicion of my colleagues. I
recall reporting a few sentences that
related our concern of the diagnosis
and perceiving a rather rapid change
in the affect of both parents. I can still
see their faces more than 30 years later.
My clinical guess now is that my own
nervousness likely conveyed a lack of
sensitivity or caring on my part.
Whatever the case might have been,
my memory of the parents’ shock and
particularly the anger in the father still
stay in my imprint. The session ended
rather quickly and certainly rather
badly from my memory. I do know
that I was able to relate that we had
already sent a blood test to confirm
our clinical diagnosis and that the
result would be back in a ‘week or so.’
I also know that it was hard for me to
check in with them over the next few
days, but I did, usually to find the
mother by herself and relaying significant sadness.
I do not really know if my own
manner and presentation played a
minor or significant role in this
defining moment for these parents in
1973. What I do know and still am
clear about is that as a second-year
pediatric resident I had been given no
instruction or guidelines as to how to
rise to this occasion. The event was
defining for me. I found myself taking
children with Down syndrome and
related conditions into my continuity
clinic. With thoughts of this event, I
entered a medical genetics fellowship
exactly 3 years later to the day.’’
This personal account relates the
experience of—in this case—an inexperienced physician encountering this
scenario: informing parents of a difficult
diagnosis in a newborn setting. However, the experience of the parents in this
event was important, if not more
important, than the physician’s experience. From studies that are mostly
surveys or opinion pieces summarized
below, it is known that the details of this
event are recalled vividly by the family.
Some of the actual facts, perhaps even
the words, may not be recalled with
complete accuracy, but the experience
and the emotion that the event engenders are recalled to the detail.
In this review, we will: (1) summarize key studies in the literature from
various disciplines on the breaking
difficult news scenario; (2) focus in
particular on the components of this
scenario for the parents of newborns
with Down syndrome; and (3) present a
theoretical model that provides a framework for both research and clinical care.
Breaking the news to a family in the
newborn setting is one of the most
difficult, yet common, challenges for
the medical geneticist and genetic counselor. ‘‘How the news is conveyed and the
circumstances surrounding the receipt of
the news have implications for the giver
and receiver’’ [Ptacek and Eberhardt,
1996]. Almost every genetics healthcare
professional has had the experience of
delivering information to a family in this
setting, though few have had any formal
training at the graduate or residency level.
Even the labeling of the event of the
delivery of difficult—or what is usually
called ‘‘bad’’—news is defining. ‘‘Bad
news’’ was defined by Buckman [1992]
as ‘‘any news that drastically and negatively alters the patient’s view of his or
her future.’’ Other authors describe it as
pertaining to ‘‘situations where there is
either a feeling of no hope, a threat to a
person’s mental or physical wellbeing, a
risk of upsetting an established lifestyle,
or a message that is given which conveys
to an individual fewer choices in his or
her life.’’ [Bor et al., 1993] As profes-
sionals it is challenging to provide this
unexpected information in a sensitive
and compassionate manner. Though it is
our obligation as professionals to
acknowledge the likely altered expectations for a child with an unexpected
‘‘bad’’ diagnosis, the recipient can be the
only judge of the weight carried in this
message. In this way, caution should be
applied in labeling the information we
deliver as ‘‘bad.’’ As will be discussed
below, in relation to Down syndrome,
there is evidence from the parents given
this news of Down syndrome in particular that presentation of a positive view
improves the experience of the event. In
this study, we chose to use the adjective
‘‘difficult’’ instead of ‘‘bad’’ in describing
the unexpected and often unwelcome
information delivered to a family.
The informing interview, in which
a new, unexpected, and potentially
serious diagnosis is given to a family by
a healthcare practitioner, has been discussed in the literature for more than
three decades. There are a few generally
accepted guidelines on how breaking
difficult news should be accomplished
effectively in this experience. Studies
exploring this issue have been published
proposing guidelines for delivery of the
news. However, few are scientific studies
with measurable outcome data; most are
expressions of expert opinion, offering
practical guidelines. Most of the scientific studies are surveys, although in the
case of Down syndrome, there is one
retrospective interventional study that
we discuss below [Cunningham et al.,
1984]. The vast majority of the literature
on breaking ‘‘bad news’’ is written by
physicians addressing the perspective for
a physician on how to effectively communicate the information.
There are three seminal studies published in the last 14 years that are
particularly worthy of special mention.
Sharp et al. [1992] presented results of a
survey of the experience and preferences
of 189 parents of children with disabilities on receiving the news of their child’s
diagnosis. The parents’ overall preferences include the following: (a) wishing
for more communication of information, (b) for the display of feeling from
their physician, (c) more time allowed
for parents to discuss the information
and ask questions, (d) more expression of
confidence in delivery, and (e) parentto-parent referral (preferred by 87% of
the families). This study represented a
survey of a relatively large number of
parents. It was one of the first to
emphasize the request by parents for
referral to other families or support
groups. The parents’ preferences also
indicated a request for a ‘‘display of
feeling’’ from their physician.
Two comprehensive review studies
in the mid-1990s captured the important
themes of the literature up to that point.
A key study by Ptacek and Eberhardt
[1996] proposed consensus recommendations for healthcare providers in this
setting. These authors tabulated the
major categories of recommendations
under two broad headings: Physical/
Social setting and the Message; see
Table I. Certain themes emerged from
their comprehensive review of what had
been previously written on the topic. As
mentioned, most of the work was based
on expert opinion, with some survey
studies. The emphasis was on location in
a quiet and private place, the need for a
‘‘warning shot,’’ and also a conveyance of
some measure of hope. Moreover, the
recurring theme of the language used by
the professional is stressed in this study.
A review by Girgis and SansonFisher [1995] came from experience in
oncology. These authors provided a
detailed list of summary principles, many
of which overlapped with the conclusions of Ptacek and Eberhardt [1996].
Additional practical suggestions listed in
this study included the following: provide accurate and reliable information;
one professional only should be responsible for the delivery; the primary
responsibility of the professional is to
the individual patient; ask the family
how much they wish to know; tell the
diagnosis as soon as it is known; be
sensitive to the patient’s culture, race,
religious beliefs, and social background;
and acknowledge one’s own shortcom-
TABLE I. Consensus
Recommendations for Breaking
Bad News
Physical and Social Setting
Quiet, comfortable, private
Convenient time, no interruptions,
enough time available to ensure
no rushing
In person, face-to-face, make
eye contact, sit close to patient,
avoid physical barriers
Support network: Identify and have
present at patient’s request
What is said
Preparation: Give a warning shot
Find out what patient already knows
Convey some measure of hope
Acknowledge and explore patient’s
reaction and allow for
emotional expression
Allow for questions
Summarize the discussion: Verbally
and/or in written form, audiotape
How it is said
Emotional manner: Warmth, caring,
empathy, respect
Language: Simple, careful word choice,
direct, no euphemisms or technical
diagnostic terminology,
avoid medical jargon
Give news at person’s pace, allow them
to dictate what they are told
Reprinted with permission from Ptacek
JT and Eberhardt TL. Breaking Bad
News; A review of the literature. 1996.
JAMA 276:496-502 American Medical
ings and emotional difficulties delivering
the difficult news.
Several recent reports in the literature reiterate the importance of a
patient-centered communication style
and continue on the theme of providing
guidelines for physicians on how to
break difficult news [Mast et al., 2005].
Vandekieft [2001] proposes a simple and
useful ABCDE mnemonic, which summarizes much of the data already
presented in the medical literature in
reviews: (A) advanced preparation; (B)
build a therapeutic environment/relationship; (C) communicate well; (D)
deal with patient and family reactions;
(E) encourage and validate emotions. By
and large, physicians and other healthcare professionals who deliver difficult
news would agree that these guidelines
illustrate the best practice, but translating
these guidelines into the patient interview remains the challenge. Notably,
other mnemonics have been presented
in the literature for quick memory for
the professional including ‘‘PACE’’
which suggests clinicians ‘‘pace’’ the
news they give a family by (1) Planning
the setting, (2) Assessing the family’s
background knowledge and experience,
(3) Choosing strategies that best fit the
family’s particular situation, and (4)
Evaluating the family’s understanding
of the information [Garwick et al.,
1995]. Mast et al. [2005] emphasized
the physician’s style in communicating
difficult news. Different types of physician communication may evoke various
perceptions, several different degrees of
satisfaction, and many emotional states
with clearly distinct reactions in recipients receiving difficult news. This theme
of physician style was initially raised by a
study by Sharp et al. [1992] where
parents preferred ‘‘confidence’’ in their
physician. It also emerges again when we
discuss Down syndrome in particular
and the positive attitude parents prefer.
Down syndrome is the most common
chromosomal condition and occurs in
approximately 1 in 800 liveborn infants.
Talking to the parents of a newborn with
this diagnosis when unexpected is a
common experience for pediatric practitioners and frequently involves medical
geneticists and genetic counselors. In the
last three decades the senior author
(JCC) has had the opportunity to witness
a change in evolving attitude toward
presenting the diagnosis of Down syndrome in the newborn setting. In the
1970s, opening the interview with an
expression such as ‘‘Congratulations on
the birth of your baby,’’ would have been
viewed as overly upbeat, but now, in fact
is often the standard [Skotko, 2005]. The
important question, however, that needs
to be addressed is whether or not the
parents experience and overall satisfaction has changed over these years. In the
last four decades, various researchers
have investigated the way in which
physicians deliver a postnatal diagnosis
to a family with Down syndrome.
Most of the studies are survey or
questionnaire investigations. Key studies
that exemplify this type of research
include Gayton and Walker [1974];
Pueshel and Murphy, 1977; Cunningham et al. [1984]; Gath [1985]; Cooley
[1993]; and Skotko [2005]. As emphasized in this last study, which was a
comprehensive review of this topic,
most studies have been limited to
‘‘reflections or very small sample sizes.’’
In addition to the key studies cited
above, a complete listing of the previous
work on delivering the postnatal diagnosis to parents is referenced in the study
by Skotko [2005]. Even a cursory look at
this literature leaves the reader with the
impression that while some families are
satisfied with the news-giving, an unacceptable proportion indicate feelings of
frustration and dissatisfaction with the
A study from our institution on this
theme, published in abstract form [Kelly
et al., 1998] provides some recent data
on these issues. The authors compared
parental experiences with parental preferences in receiving news of the diagnosis of Down syndrome. Surveys were
sent to 119 Utah families and 38 of the
questionnaires were returned. Results
indicated that 42% of parents were
satisfied overall with the interaction with
their professional at the time of diagnosis, while 38% were dissatisfied
(greater than 20% were neutral). Overall, parental preferences were unmet
regarding how long it took the healthcare professional to ‘‘get to the point of
the discussion,’’ the amount of informa-
tion provided both in verbal and written
form, discussion of mental retardation as
a common feature of the condition, level
of confidence in healthcare provider,
and professional display of feelings.
These data underscored the importance
of parental preferences in receiving
difficult news in a relatively recent
survey that provides a snapshot of
parents’ perceptions of this experience
in Utah in the mid 1990s.
The investigation of Skotko [2005]
surveyed the parental perspective of
mothers who received the diagnosis of
Down syndrome on their newborn.
This author collected data from mothers
who had children with Down syndrome
over the past 40 years. As a result, he was
able to examine the question of whether
healthcare professionals are ‘‘getting
better’’ in delivering news of the diagnosis. Mothers rarely reported that the
birth of their child with Down syndrome
was ‘‘a positive experience.’’ However,
they were more optimistic when their
physician talked about ‘‘the positive
aspects of Down syndrome’’ and provided them with current printed materials. These two factors seemed to be
most important in predicting a more
positive experience. The mothers
reported that few healthcare professionals provided the positive aspects of
Down syndrome, presented them with
current information, or offered referral
to a support group or other experienced
parents. Analyses do show that this is
changing, ‘‘albeit slowly’’, and for most
variables change only progressed from
‘‘strongest disagreement’’ to ‘‘disagreement.’’ Conclusions of the author reiterate the fact that even after decades of
study and publication and recommendations of proposed guidelines, healthcare
professionals still need to continue to
improve the manner in which postnatal
diagnoses are delivered in this setting.
Despite the helpful recommendations
and guidelines provided by experts in the
field, there still exists significant need for
scientific investigation of the effect of
delivery of news to families.
As mentioned above, one of the few
interventional studies performed was the
work of Cunningham et al. [1984]. In this
study, parents of newborns with Down
syndrome were counseled either by an
expert team or in the usual fashion of the
particular hospital. While the numbers
are small in these cohorts, 100% of
mothers in the model service cohort
reported they were satisfied. Only 20% of
the mothers in the control group
expressed similar satisfaction with the
experience. The work of Cunningham
et al. [1984] suggests that when parental
suggestions are implemented in a routine
manner, satisfaction levels improve.
As mentioned, the experience of the
scenario is remembered vividly by
families. Whether or not satisfaction with
this experience has a long-term effect in
parental coping is unknown, and this also
deserves future investigation.
Based on personal experience and a
continued review of the literature, we
propose a guideline of care for the
newborn with Down syndrome. These
recommendations have been enriched
by the investigation of Skotko [2005]
(Table II).
While numerous authors and reviewers
have proposed guidelines for the professional in this setting, no theoretical
framework exists upon which to base
research and clinical care. We propose a
model that can be utilized for future
investigations and for expanding future
care guidelines.
This model, based on a combination of personal experiences and key
references in the literature, is depicted in
Figure 1. On the left aspect of Figure 1,
the many variables that are related to
pregnancy are categorized in various
groupings. The center of the model is
the birth of the child with the genetic
condition. On the far right is the
reaction sequence of the family which
is impacted by the informing interview
(the major theme of this study) and
supportive care.
Certain key writings of the 1980s
provide the literature basis for this framework. Kessler [1979] reviewed many of
the themes that enter into the experience
of pregnancy leading up to the event of
birth. There is a vast literature on the
TABLE II. Recommendations for Setting, Agenda, and Timing of ‘‘Difficult News’’ Informational Interviews
(Adapted from Carey JC and Bamshad M [2000] and Skotko B [2005])
Informing interview (often prior to confirming karyogram)
. Setting
As soon as possible
Both parents together or w/parent support person
Have baby present when possible
Second interview (often after confirming karyogram)
. Setting
. Message and Agenda
Refer to the infant by first name
Present process of diagnosis and definition of syndrome
Perform a physical examination and emphasize the
normal aspects of the baby
Provide current information on developmental
disability and natural history of the condition (written & verbal)
Present factual information, that is, all have developmental
Set follow-up plan
Allow parents privacy to discuss information alone
. Message and Agenda
Let parents’ questions drive the agenda
Discuss chromosomes, genetic information, and
the baby’s results
Discuss recurrence risks and prenatal testing options
Provide community resources and refer to other experienced
parents and support groups
Review guidelines for health supervision
. Psychosocial aspects
Assess and acknowledge parents’ reactions
Discuss the positive aspects of the condition
Allow parental questions
Continuing support
Follow-up with family over next several days
Acknowledge feelings of denial, anger, guilt, and sadness mixed with the natural tendencies to bond to the baby
Reassure the parents of the normalcy of these feelings
Figure 1.
Proposed theoretical framework for breaking difficult news in the newborn setting.
psychology of normal pregnancy and a
small but important body of work on the
meanings of a child in a family [Kessler,
1979]. Certainly both the events that
surround the attachment of personhood
and the individual background of a family
(referred to in Fig. 1 as demography, that
is, parental ages, gravidity, ethnicity,
religion), play a role and are potential
independent variables leading up to the
event of birth [Irvin et al., 1982]. Most
importantly, the meaning of congenital
defects and disabilities within a specific
culture likely plays a role [Ablon, 2000].
At the time of birth, the individual
medical problems present in the infant
result in their own set of challenges for
the family in their coping process. The
parents who had a child with an orofacial
cleft, ambiguous genitalia, or Down
syndrome deal with a different set of
themes than the family of a child with a
structural heart defect [Irvin et al.,
1982]. The sequence of parental reactions in the birth of a child with
congenital malformations has been
likened to the crisis that occurs with
any loss [Drotar et al., 1975; Irvin et al.,
1982]. The reaction sequence occurs in
stages with significant variability among
families as to how long a parent proceeds
through the stages. The model by Drotar
et al. [1975] proposes the stages of shock,
denial, sadness and anger, equilibrium,
and reorganization. Recognizing this
process and being able to employ appropriate counseling techniques dependent
on the stage is an important component
of our model as well. Once this reaction
sequence is set in motion, intervention
strategies for any crisis in a medical
setting would be implemented for supportive care.
As suggested in this study, the
informing interview is a potential touchpoint that could impact the sequence of
stages that occur at birth. This model
would propose that various aspects of the
informing interview could be examined
in relation to outcomes, such as parental
satisfaction or long-term coping. Clearly,
supportive care by other health professionals, pastoral advisors, extended family,
and the family’s culture also enter into
impacting the reaction sequence. Elements of supportive care that could
be investigated in terms of affecting
outcome include the role of pastoral
care, the effect of referral to support
groups or experienced parents, and
the establishment of a medical home
[American Academy of Pediatrics (AAP),
With this model in mind, various
questions and hypotheses could be posed
and studied with outcome research
design. Investigators would need to
identify the outcome indicator such as
parental satisfaction or emotional aspects
of the parents using well-established
outcome instruments. One could imagine such questions as the interaction of
the informing interview within various
cultures or numerous demographic factors or the seriousness or type of
individual problem playing a role in
As summarized by Skotko [2005], there
is still much room for improvement for
us as professionals in this important event
in the lives of our patients. With our
model and the review of the literature in
mind, the authors are suggesting two
general recommendations for continued
improvement with a goal of parental
satisfaction in mind:
1) Training of healthcare professionals,
including medical genetic residents
and genetic counselors in clinician–
patient communication, in general,
with a specific focus on breaking
difficult news. There is a growing
body of literature on the teaching and
evaluation of communication skills
including the communication of
difficult news. This body of literature
should be consulted in developing
such training modules [Eggly et al.,
1997; Greenberg et al., 1999;
Mukohara et al., 2004; Deveugele
et al., 2005; Amiel et al., 2006]. Most
training programs for genetic counselors and genetic residents incorporate training modules for breaking
difficult news into their curricula.
We recommend continued development and implementation of these
clinical skills as a part of programs’
core competencies. Geneticists and
genetic counselors’ skills in delivering difficult news should be utilized
in teaching and developing these
complicated skills even in other
disciplines. They likely have vast
experience in delivering the difficult
news of an unexpected genetic
diagnosis, Down syndrome in particular, which could benefit other
2) Development and establishment of
an infrastructure within each hospital
system that makes it routine for the
provision of current and accurate
information and current referral
to parent support groups and experienced parents [Genetic Alliance,
http: //].
For those centers without a genetics
consultation service, new patient
information packets could be made
available to families of newborns
with Down syndrome. Up to date
information in written form with
support group contact information
would be included.
From a general point of view,
another issue that this discussion raises
(but does not address here) is the
potential for destigmatization of genetic
conditions with better communication
of information. We recommend establishing an international collaboration
of healthcare professionals, including
geneticists, who would work toward
developing strategies for the acceptance
and destigmatization of persons with
congenital conditions and disabilities by
In conclusion, we have learned
from parents and families of patients
that delivery of difficult news in a
sensitive, caring, and confident manner
is essential to their experience in adjusting to and accepting an unexpected
diagnosis of Down syndrome in their
newborn. A positive, confident, and
informative discussion with appropriate
referrals to support groups and experienced families is clearly desired and
highly recommended by the authors.
Continued focus on development and
implementation of sensitive delivery of
difficult news in medical and genetics
postgraduate training programs will
better serve and support our patients
and their families. This approach will
positively impact the receipt of and
eventual adjustment to the difficult news
a family receives.
The authors express their appreciation to
their mentors: the many families who
have experienced receiving ‘‘difficult’’
news and who inspired them to ponder
this topic.
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