Immunizations & Vaccines • Apr 15, 2013

The HPV Vaccine: Why Some Parents say “No”

A mom I know politely declined the HPV vaccine for her pre-teen daughter, saying that she was worried about vaccine safety.  When her daughter and the pediatrician were alone together in the exam room, the pediatrician told the daughter, “Don’t worry, I’ll make sure you get it before you go to college.”  The preteen, who wasn’t sure she wanted the vaccine, told her mother the pediatrician’s plan.  Irate, the  mom promptly fired her pediatrician and called me for a referral to a new doctor.

This mom is not alone. Most parents are refusing the HPV vaccine.  According to CDC data from 2011, only 35% of girls and 1% of boys completed all three doses of the HPV vaccination.  53% of girls received at least one dose.  Even families whose children are otherwise fully vaccinated are saying “no” to the HPV vaccine.     By comparison, 78% of teens received the Tdap vaccine against tetanus, diphtheria and pertussis, and 71% received the meningitis vaccine.

HPVWhy are so many parents saying “no” to the HPV vaccine?  A study in the journal Pediatrics tried to answer this question, and here’s what they came up with.

“The consistent 11% to 14% of parents who gave the main answer ‘Not sexually active’ illustrates that parents mistakenly perceive this vaccine is related to and necessary only if there is current sexual activity. Another consistent response, given by 14% to 17% of parents across the 3 years studied, was that the HPV is ‘Not needed or not necessary,’ despite the high prevalence rates of HPV infection and of the infection’s dire consequences suffered later in life. Also troubling was the dramatic rise over the 3 years in safety concerns about HPV, which increased from 4.5% to 16.4% of parents over the 3-year period. This increase in safety concerns, which coincided with a decreased prominence of “not recommended” as a reason not to get HPV, may imply decreased parental reliance on clinician recommendations for HPV.

In other words, parent’s don’t trust their pediatricians any more, at least when it comes to the HPV vaccine.  I’ve spent several years talking to parents about this issue, and I think it’s about something more than just the HPV vaccine, something that’s very hard to study.  I think the real issue is that parents are feeling loss of their parental autonomy.  They are getting kicked out of their child’s exam room at pediatric check-ups often when their kids are only 11 or 12 years old, and they worry about the healthcare provided behind closed doors.  Our government, also, struggles to balance parental autonomy while still providing tweens and teens full access to confidential health care.  In some states teens actually have to sign a release form before parents can view their medical records, yet these same teens need parental permission to go on a school field trip.  A growing number of public schools now have on-campus health clinics that provide convenient, necessary health care, yet many parents just don’t like the idea of kids getting health care without their knowledge.  Even when parents agree with the care provided, they feel like someone else is saying, “I know what is best for your child, you don’t.”

 

Do you get nervous about leaving your tween or teen alone in an exam room without you?  Does your child feel uncomfortable without you there?  If so, you need a new doctor.  Every family needs a pediatrician they can trust, someone with whom you really want your child to develop a private, confidential relationship.  If you have concerns about vaccine safety, you need a doctor that will spend the time really listening to what you have heard and provide you with their best professional response to that information.  If you worry about values, find a pediatrician who shares those values.

As for the HPV vaccine, I am personally quite convinced of its safety, and I don’t feel the safety research was influenced by potential financial gains for the pharmaceutical industry.    Stay tuned next Monday for my post on the very sad reality of HPV and how this virus is infecting our children at frightening rates, even without sexual contact.

The mom in the story at the beginning of this article told me she wanted her daughter to have the HPV vaccine, but she needed a pediatrician she could trust.  She fired her pediatrician because the doctor disrespected her as a mother, not because she doubted the doctor’s medical knowledge.  The child in this story is the lucky one, because ultimately she got a new doctor and good health care.  I know of other teens who simply aren’t taken to check-ups because their parents fear what will happen behind closed doors and they worry about leaving a pediatrician who they’ve otherwise liked and trusted since their kids were newborns.  If you feel this way, it’s time to find a new doctor.

—————–

Update, 28-April-2013

Do Adolescents Need Privacy With Their Pediatrician?

In the above post I’ve suggested that the HPV vaccine threatens parental autonomy, and this issue may contribute to the low HPV vaccination rate.  I’ve never seen anyone else write on this issue, yet parents bring it up to me all the time.  I felt it was time to bring this issue to public discussion.  Thank you to so many of you that took the time to contribute your honest comments.

I’m a hospital-based pediatrician, so I don’t have the same close relationship with families that primary care pediatricians enjoy.  Regarding the HPV vaccine debate, I offer a different perspective—I ask every one of my patients who their pediatrician is and if their vaccines are up to date.  I find most families enjoy good relationships with their pediatricians.  Yet every shift I work I meet families who are frustrated with their relationship with their primary care physician, and families who choose not to vaccinate.  The HPV vaccine is the most controversial.  Families ask me for my opinion on this vaccine very regularly—even if they came to the ER with a broken arm, they are often interested in a second opinion on the HPV vaccine.

Should teens be permitted to get the HPV vaccine without parental consent?  Should a pediatrician counsel a teen about this vaccine without a parent or guardian present?  This is a highly controversial issue, and I have no clear answer.  I do feel that pediatricians should highly respect that values and opinions of each parent.  Most do.

It is my hope that all parents will find a pediatrician they trust enough to see their teens privately.  Teens need this privacy to ask questions they might be embarrassed to ask in front of parents.  I’ve had many frightened teens confess to drug use once their parents were out of the room.

When necessary, I do ask minors if they would like to excuse their parent from the exam room.  Only once did I have a parent decline to leave, and I did not make her go.  Twice I have had parents leave before their child even answered the question, only to have the crying, frightened patient ask me to bring their parent back into the exam room.  Of course I brought them back.

As a parent, it is your responsibility to find a pediatrician you are comfortable leaving your child alone with, someone you trust to respect your parental opinions and autonomy.  Most families do find a pediatrician they trust, and I find that most pediatricians do an excellent job respecting parental opinions.  The pediatrician in the story at the beginning of this post is an exception.  Most are much more respectful of parental opinion.

Yet so often I have parents that tell me they just don’t trust their pediatrician to counsel their child alone, especially about the HPV vaccine and issues related to sexuality.  They otherwise have always loved and trusted their pediatrician since their child was an infant, and they don’t really want to leave the practice.  I’ve even had people tell me they stopped bringing their child for well-child check-ups over this issue.  I find this very sad.  If you can’t trust your pediatrician enough to leave your child alone with them, talk about it with your pediatrician.  If you still don’t trust them, find a new pediatrician.

 

Comments

  1. As a mother of five daughters ranging in age from 29-11, a woman who has been invited to sit on medical advisory bodies here in Oxford, UK, and the wife of a Professor of Mathematics, I would say that my – and many others’ – concerns ought not to be dismissed as merely a reaction to a purportedly perceived lack of control of our adolescents. I would suggest that there is a general and growing lack of confidence, worldwide, in the medical profession as people become more sceptical of the traditional medical approach. In the course of my time on the medical advisory body, my husband and I were deeply shocked to discover that not all medical research holds to the same rigorous standard as other scientific approaches – something not generally known, less still, acknowledged. Combine this with the alarming influence extended by pharmaceutical and insurance companies, instances of misinformation and cover-ups at a time when the general populace has access to more and more information and their reticence can be easily understood. It is high time that those in the medical profession stepped down from their self-imposed lofty position and began to respect their clients as being largely intelligent, often well informed and not necessarily as blinkered and hampered by tradition, extreme conservatism, a dogmatic infrastructure and inappropriate external influences as they themselves too often are. Poor excuses and ill-apportioned blame will not help matters. In order to regain – and earn – the public’s respect and confidence once more,I think it timely all aspects of the medical profession to take stock!

  2. Maybe those closed doors were never a good idea to begin with! How about inviting parents back into the room and making the transition from child to full partner in their own healthcare a much more gradual one which parents need not fear and which ultimately graduates young adults who are both better educated about their own health and are better prepared to be advocates for themselves and partners with their future providers?!

    and why, exactly, does my *11* year old (or 12, or 13…) *need* a closed door, let alone a “private, confidential” relationship with any adult outside the family – just because he or she is their doctor?

    For years I have taught my daughters that no adult should *expect* “privacy and confidentiality” from or with a child – and yes, my tween and young teen are both still children in many ways…albeit with several steps taken on the path to adulthood – and suddenly at the age of 11 they should favor the trust of an adult other than their parents because that person has an M.D.and a white coat? (No wonder that parent was livid! Where did anyone get the idea that doctors should hold some kind of sway we wouldn’t give any other adult in our children’s lives? And it can be impossible to find doctors who agree with your every value, by the way.)

    If my child *needs* a private and confidential relationship with an adult, there are far more adults in her life who she knows better, sees more often, and who better know – and reflect -our family’s value systems than their doctors necessarily do. Sorry, none of their providers gets a “by” from the expectations we have of any other adult in their lives – and we expect those adults to not share secrets with our kids unless they believe our child is in imminent danger and somehow keeping secrets is the only way to protect her.

    I realize the law reflects some madness in which my 13 year old should suddenly have access to certain types of health care without my permission or knowledge…but it’s not the only health care regulation to which our family is deeply opposed. Doctors do not always know best. (I realize the law protects the doctors in these situations…at least with our 13 year old…and I can’t do anything about it. But if a doctor was actively pushing that kind of secret keeping, I wouldn’t wait to find another provider before pulling my child from that practice, either.)

    We choose our medical providers (and with chronic hereditary conditions, we have a whole team of them) when we trust their medical judgment in most areas. I do not have to agree with them on every single issue, as long as we are open with each other and those are issues on which we can agree to disagree.

    I want my children to learn how to navigate those kinds of disagreements with their doctors and to learn how to advocate for themselves in those situations, too, which they learn to do by seeing it modeled and then slowly taking over those situations themselves. Especially with chronic conditions, it is vital that my children learn how to be partners with their doctors – and partners do not automatically assume one person always knows what is best and right for the other. They work together to come to decisions with which they can both be at least comfortable.

    I don’t want my daughters trusting their doctors so much they check their brain at the door. Particularly with a rare hereditary condition, the reality is we are often going to know more about our condition than several of our doctors. The doctors we choose get that. My kids can’t always defer to every person wearing a white coat. They have to be prepared to advocate for their needs and for their desires, to educate doctors who need to be educated, and to walk out the door when a doctor isn’t humble enough to admit they don’t know enough to make every decision for every patient.

    BUT My kids won’t learn that by being taught that they have to be able to agree with every recommendation their physician makes or that they have to share every value – or even most of them. I highly suspect some of their specialists, and perhaps even their pediatrician, have some very different values than we. But they are the best doctors to treat our particular conditions. Our children have to be able to work WIth doctors with whom they may not share ideology when they are the best choices for them medically speaking. They learn that by being taught that they have a resposibility for their own health and that they have a responsibility to speak up when they disagree – and to part ways only when they come to an impasse where either they or their provider feels it is a health care decision on which neither can yield.

    AND our kids don’t learn *that* , let alone how to *do* that, by being thrust into a room, by themselves, before they are ready to start advocating for themselves. That is a maturity process I hope will be complete by the time they are 18. They don’t have the knowledge yet, or the maturity, to be navigating that relationship solo. I can’t imagine any tween or young teen does. I am happy to step out of the room for privacy sake, if my girls want it, for physical exams. But after that, I expect conversations about medical care to happen together with me or their dad…with the girls slowly taking over the conversations and decision making to the point they are completely independent by age 18. I am slowly backing off even now, but it will be many years before I step out of the room for good. No one knows when my child has a question they aren’t asking or appears to have a concern they aren’t voicing like I do. Someone needs to advocate for my kids learning to be their own advocate – and that someone is me.

    Lastly, why the assumption that parents should trust doctors on every single issue, including this vaccine? Many of us with young teens have keen memories of the rota virus vaccine being recommended – and then suddenly having our doctors tell us *not* to get it for our kids or to not complete the series – when we were new parents. Maybe it is not that parents don’t trust medical professionals’ recommendations about this certain vaccine as much as the fact that parents are choosing to become more active partners in health care. Maybe they don’t consideoor the potential benefits of this one single vaccine to be worth the potential risks at this time. And maybe we’ve just seen what can happen when we jump on the bandwagon too quickly with new vaccines and new medications -having been told before the benefits outweigh the risks….and then told they changed their minds – and we just aren’t willing to place our children in the position of being guinea pigs. Again.

  3. Next time a doctor, vaccine nurse, health authorities, media or other promoters suggest Gardasil, ask them to provide serious unbiased peer reviewed studies with documentation for all these

    HITHERTO UNANSWERED QUESTIONS:
    Whether it prevents cancer, necessity for boosters, whether it increases the risk of cancer, whether there is increased risk of cancer due to the unexpected discovery by an independent laboratory of aluminium bound recombinant HPV DNA, whether Gardasil vaccinated may donate blood without the aluminium bound recombinant HPV DNA causing serious health consequences for the recipient, whether there is increased risk of autoimmune disorders due to the recombinant HPV DNA, if HPV is necessarily an infection transmitted by sexual intercourse, whether the vaccine causes genotoxicity, whether it targets the relevant virus strains in different demographics, whether the strains change in the course of time, adverse events due to concomitant administration with other vaccines, the true numbers and extent of serious adverse events, long term serious side effects, what the results would be if a true placebo had been used in all the clinical trials, what the results of clinical trials would be if Merck had not used their own exclusion criteria, whether there is increased risk of blood clots when Gardasil is combined with hormonal contraceptive pills, whether there is an increased risk of brain damage, consequences of “bridging” – the extrapolation of study results from one group to another, potentially serious consequences if the vaccine is not thoroughly shaken, whether the vaccine will increase the risk of infertility due to polysorbate, whether polysorbate is carcinogenic, health consequences due to the presence of the combination of polysorbate and l-histidine, whether aluminium adjuvant is safe, consequences due to the presence sodium borate (borax), whether the vaccine will increase the risk of miscarriages, stillbirths or babies born with anomalies, whether Gardasil is excreted in human milk, the complete list of ingredients, whether possible benefits outweigh the risks.

  4. I found this through Linkedin. I am a recent HPV Neck Cancer survivor as of Nov 2012 and my son will be getting the HPV vaccination. I don’t want him to have to experience the horrors I did.

    I am lucky, and thankful for the MDs at UVA in Charlottesville who saved me, but my life is forever changed..

    Parents and teens, could learn a thing or two from my story..

  5. Dr. Berchelmann,

    In your scenario, I agree that what the pediatrician said to the young girl in private was inappropriate. This physician deliberately undermined her parent’s opinion, which should be respected whether in open or in private.

    In this brief post you comment on many issues regarding declining HPV vaccination rates. As a practicing pediatrician, I respectfully disagree with your comments on 2 fronts. I fear you are making sweeping generalizations that devalue those of us who are truly trying to partner with families for optimal care.

    First, I doubt that you truly believe that your patients simply don’t trust you. Otherwise, we are all in the wrong profession. I believe that parents ultimately DO trust pediatricians when health care decisions need to be made – including vaccines – and fairly recent studies suggest the same (http://pediatrics.aappublications.org/content/127/Supplement_1/S107.full.pdf). I imagine your statement saying otherwise is fueled by the experiences of frustrated parents who simply have not found a trusted partner in their healthcare. In my experience, these families are not the majority.

    Secondly, you have clearly stated your position against private time with teens in various past writings, and have implied them again here. Your personal opinion is contrary to what is encouraged by our Academy of Pediatrics.

    In my private practice, I see each child alone by the time they enter high school. This is with the agreement and understanding of their parents, not to surpass their “parental autonomy.” Most parents happily and willingly leave the room for a brief moment, knowing that I will support their families values and opinions as would any partnering physician.

    My private discussions with teens often include vaccines. In fact, I encourage vaccine questions and explanations so my teens can fully understand what we may inject into *their* body.

    My goal is to nurture a growing individual to a place of confidence in wellness. If that goal is shared by the parent of the teen, the privacy of the exam room can be an amazing place to impact the life-long health of a growing young person.

    I am curious, however, with the results of your approach. In your experience with counseling teens and parents together for well child visits, do you find the discussion of traditionally sensitive topics, such as drug use and sexuality, effective? How to the parents join in these conversations? Do you find your personal rates of HPV vaccination to be higher than those in this recent study because of having these discussions with the teen in the room?

    Thank you for sharing your voice on this blog, and allowing me to share mine. Please remember those of us who are trying to do good by our families. I would never want any family to assume that the indiscretion of one physician speaks for all of us.

    N Burgert, MD

  6. The safety of the HPV vaccines is under fire as more research is being produced on them. Our daughter did not want Gardasil but was frightened into getting it in 2007 – after 2 doses she has been severely disabled. We, her parents, are heartbroken over the devastation of her life.. We are not alone in this nightmare. Please check out recent findings by Dr Sin Lee, MD; Dr Russell Blaylock, MD, research papers by Lucija Tomljenovic, PhD & Christopher Shaw, PhD.. To name a few.. These individuals have uncovered very disturbing evidence that the HPV vaccines aren’t what they are made out to be. Please research before vaccinating your child or yourself. The Pap Screen program is the safest, most effective way to protect your daughters. As for the boys, this vaccine was developed originally for girls/women in third-world countries, specifically. The aluminum adjuvant has been found to bind to the HPV-16 L1 DNA particles which can injure the blood-brain barrier, the blood barrier of the stomach, and the spleen. Please research deeper! Over 30,000 adverse events and 133 deaths linked to HPV vaccines.

  7. It sounds like this parent did more research than you did and thankfully questions authority in regards to the safety of her child. Every parent should. Period. Then they should continue to do so as an adult–and be encouraged to do so. Doctors are there to provide information for a patient to make their own decisions. Doctors make mistakes. In fact, if you look at the statistics and the forums, doctors are wrong A LOT! Every person’s body is different. Doctors should not consider themselves the ultimate authoritarian in regards to the bodies of others merely because they have been schooled in the field of medicine. They should be a partner in the process. They should NEVER make a person feel bad or justify their own authority when patients make decisions other than what they suggest. Unfortunately, this happens all too often and it is one reason why many of us have lost respect for doctors. To earn that respect back will take more respect and actual education from doctors…doctors who don’t take their information from pharmaceutical companies and positive-research-finding-only medical journals.

  8. Please know that my daughter had 3 seperate reactions to gardasil, a blistering rash 3-4weeks after the first shot, hives 3-4 weeks after the second that continued until the third and then worsening hives to the point she could not sleep developing into wheals, angioedema, joint pain, head aches, nausea, vomiting, dizziness after the third. I will never forgive the primary doctor, covering physician, and immunologist who reassured me over and over that this HPV vaccine was not causing these autoimmune issues in my child and encouraging me to continue to vaccinate her and vaccinate her and vacinate her again. She has had hives over a year now. She just turned 16 and is still not sexually active. We see ANOTHER immunologist next month. No medication works to control the hives. Thank you very much doctors for changing our lives forever. Thank you Gardasil and MERK and the CDC and the FDA for ruining my daughters sophmore year. Thank you for all the pain and itching and suffering you have caused her. Not that any of you really care because you are compleately protected by the vaccination compensation program. And I am sure the goverments expert witness will do their best to try to disprove a causal link. But it is in black and white and the documentation is very clear. Gardasil has caused autoimmunity in my daughter. So keep telling people that Gardasil is not hurting anyone. You are protected by the goverment anyway, you hold zero liablity.

  9. This neuro-toxic vaccine was fast-tracked by the FDA and Merck via state legislatures back in 2006 and the few clinical trials that were conducted were not conclusive as to the efficacy and safety of this vaccine. A clinical study conducted abroad had 1200 recipients w/85% suffering adverse reactions and 17 girls dying. This was not what the doctor ordered and efforts were made to bury the study, however, it was noted in testimony by a vaccine researcher in CO.

    The 3-shot series contains 675 mgs of aluminum w/1 mg of aluminum known to be neuro-toxic. To put it in perspective, a baby at birth is often given the hepB shot containing 240 mgs of aluminum, more than Shaquille O’Neal could safely handle. Girls, and now boys, are having reactions to the Gardasil and Cervarix vaccines w/side effects including, but not limited to: myalgia, asthma, allergies, juvenile/rheumatoid arthritis, heart arrythmia, seizures, loss of consciousness, Guillain-Barre (paralysis), and death. The numbers of injuries and deaths to date are not conclusive as only 1% of vaccine reactions are reported to VAERS (Vaccine Adverse Event Reporting System), a voluntary database in which many doctors are hesitant to report vaccine injuries/deaths. It’s not good for busine$$ to have patients become damaged and/or die on your watch, hence the under-reporting.

    Since ’86, when Congress enacted legislation to indemnify vaccine manufacturers from liability due to the thousands of cases filed by families of vaccine-injured children, many of whom died as a result of the DTP shot, over $2.4 billion has been compensated. In 2007, over $92 million was paid out for vaccine damage/death w/the latter paying a paltry $250k, small change for a precious life. These numbers are again under-represented as less than 1% of vaccine injuries are reported.

    Dr. Diane Harper, lead researcher for Merck’s Gardasil vaccine, has gone on record retracting many of her original findings re: this neuro-toxic vaccine. HPV does NOT cause cervical cancer, however, the HPV vaccine raises the risk of developing cervical cancer by over 44%. Merck, the manufacturer of Gardasil, presented to the FDA, prior to approval, the following statement: “If you have been exposed to HPV 16 or 18 prior to injection (Gardasil), your risk of precancerous lesions is increased by 44.6%.” Over 90% of HPV clears by itself and Pap smears and cervical screenings are very adept at detecting abnormal cell dysplasia. Multiple sexual partners, unprotected sexual practices, and an unhealthy lifestyle/diet are also contributing factors to developing HPV.
    Check out http://www.nvic.org for more info (Nat’l Vaccine Info Center) or http://www.thinktwice.com

  10. Did you happen to notice that an awful lot of these comments are made by educated individuals? Maybe we should not be dismissed so easily as just being scared parents but concerned parents in a world where someone else is trying to raise our children besides us.

  11. Here is my family’s personal story:

    If you are the parent of a minor child, you most likely have heard about one or both of the HPV (human papillomavirus) vaccines currently on the market. A trip to the pediatrician’s office with a teen or pre-teen is typically where the first discussion takes place. The doctor will dutifully recite information. HPV is the most common sexually transmitted virus in the United States. As a parent, that gets your attention. They go on to further state that the vaccine will protect your child from the strains of the virus that most commonly cause cervical cancer in females and genital warts in males. These are both very uncomfortable subjects for most of us. However, as parents, we want to protect our children at all costs from anything and everything possible.

    As with any vaccine, the parent is provided a pamphlet or sheet containing the standard information: what is HPV, why get vaccinated, who should get vaccinated, and the obligatory safety information. After reading the information and listening to the doctor’s recommendation explaining that the vaccine is very safe (and it seems to be for most patients), many parents make the decision to have their child protected. I was one of them. I rolled the dice and sadly, my daughter lost.

    The information pamphlet states that the vaccine has been used in the United States for about six years and has been very safe. You are warned about pain and swelling of the injection site, fever, headache, and the most troublesome side effect, fainting. The patient is required to remain in the doctor’s office for a period of time after the injection as a safety precaution.

    What the information pamphlet does not address is that over 29,000 injuries and 130 deaths have been reported following HPV vaccines. Vaccine injury reporting is voluntary in our country and the Center for Disease Control acknowledges that adverse events, as they are called, may be 10 to 100 times greater than those actually reported. Do the math. The reported numbers seem very significant to me, but I am the mother of one of the injured. I trust we can all agree that the actual numbers could be staggering.

    The list of new medical conditions being reported following the HPV vaccine is also staggering, I counted 144 conditions. My daughter has 31 of them. She suffers mainly from neurological, autoimmune, and adrenal issues. The worst offender is a migraine-like headache that has been present every day, all day and night for more than a year. The neurologist refers to it as migraine-like because all the symptoms are there yet it does not respond to any medication. Her immune system has also been compromised. She suffers from leaky gut syndrome and now has sensitivity to 20 common foods. Dealing with this for more than a year now has taken a toll on her 16-year-old body. Chronic pain has lead to depression and adrenal fatigue. All of this in a girl who had what was described as an “unremarkable’ medical history prior to vaccination.

    While my daughter’s symptoms are grave, she really is one of the lucky ones. Many of the injured suffer from daily seizures or even multiple seizures per day. My daughter does not. For that, I am thankful every day. Having a child in crisis is hard. Having a child with a medical crisis that medical doctors do not know how to reverse is even more difficult. My decision to protect her, in fact, caused her great harm.

    Choosing to give your child a vaccination is a personal decision, but it is one that should not be taken lightly. Do your own research, do not simply rely on the information pamphlet, it is, after all, written by the vaccine manufacturer. I learned this lesson the hard way. When you decide if you will roll the dice, please, for the sake of your child, remember three words: Knowledge is power.

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