Communicating with Parents About Immunizations in a New Era D. A. Gust, PhD, MPH Vaccine Acceptance and Risk Perception Team Immunization Safety Office Office of the Chief Science Officer Centers for Disease Control and Prevention

New Era Parent Segments Brochure Development Toolkit Next Steps

New Era We are in a new era of immunizations. Lower prevalence of VPDs and more attention on vaccine adverse events (real and coincidental).

Lack of Familiarity “I don’t know everything that they’re getting because I don’t know what all the little letters mean” “…explain to us the reason why we should do this (vaccinate child) and what it could possibly prevent later on down the line.” There is a growing lack of familiarity with vaccines and the diseases they prevent. These quotes exemplify this lack of familiarity.

Comparison of 20th Century Estimated Annual Morbidity and Current Reported Morbidity Vaccine-Preventable Diseases (pre-1990 Vaccines) 20th Century Estimated 2004 Reported Percent Disease Annual Morbidity † Cases † † Decrease Smallpox 29,005 0 100% Diphtheria 21,053 0 100% Measles 4,000,000 37 99.9% Mumps 162,344 258 99.8% Pertussis 200,752 25,827 87.1% Polio (paralytic) 16,316 0 100% Rubella 47,745 10 99.9% Congenital Rubella Syndrome 152 0 100% Tetanus 580 34 94.1% † Unpublished CDC data, reported January 2006 † †CDC. MMWR August 12, 2005. 54(31); 770 and CDC. MMWR December 2, 2005. 54(47);1214 This slide shows the Comparison of 20th century estimated annual morbidity to the current morbidity for VPDs in the US. The percent decrease in morbidity for these diseases has been between 87 and 100%. No wonder some parents don’t know what all the little letters mean.

Strong Agreement that Vaccines are Necessary This lack of familiarity with VPDs is likely also reflected in this bar graph. This bar graph shows that a larger proportion of older people than younger people strongly agree that vaccines are necessary. This likely reflects their memory of the diseases and how many children suffered from the diseases.

Lessening of Confidence “I’ve always heard that there are studies that show some vaccines that are specially linked to boy babies, .. that there’s a higher autism rate for children receiving these vaccines versus children who are not… ..” It may be that the lack of familiarity is related to a lessening of confidence in vaccine safety. Here is a quote from one mother reflecting a lack of confidence…

Confidence in Vaccine Safety We asked a question on a national survey over 3 years “How confident are you in the safety of routine childhood vaccines? The bar graph shows the percent who said confident or very confident. While the proportion is very high over all 3 years, it decreased 14%.

Advocacy Groups Mobilization of advocacy groups, increasing number of states allowing philosophical exemptions Internet activism-43% of websites were anti-vaccination Philosophical exemptions- 19 states in 2005 Relatedly, associated with the decline in disease prevalence is an increase in the mobilization of advocacy groups and increasing number of states allowing philosophical exemptions. Internet Activism-Davies et al 2002 in assessing the likelihood of finding an antivaccination site on the Internet, found that of 100, 43% were anti-vaccination. Today 19 states allow philosophical exemptions

Doctor-Patient Interaction Changing culture of doctor/patient interaction: from paternalism to partnership Informed patients “I would like to know the whole story. [I] Want to know the pros and cons. I want to know the ingredients. Tell me everything. I don’t want you to say this is necessary and that’s it.” Also, there is a changing culture of doctor/patient interaction, from paternalism to partners. A large proportion of patients want to be fully informed. Here is a telling quote. In recent decades, recognition of patient’s rights to be informed about their medical care has increased. (Benbassat et al 1998).

33% of Parents Don’t Agree They Have Access to Enough Immunization Information In a recent survey, 33% of parents didn’t agree they had access to enough immunization information.

Access to Enough Information This bar graph, I believe, tells us something very important. These are people who agree, are neutral and who disagree they have access to enough information to make a good decision about immunizing their child. As you can see, here on the left parents who disagreed had the highest percent who said they were concerned that children received too many vaccines, vaccines may cause chronic illness…. It may be that when there is a void of accurate trusted information, doubts about vaccines and/ or misinformation is more readily accepted.

Concerns Can Lead to Refusal to Immunize In this New Era, concerns can lead to refusal to immunize children. Although coverage is high now with just a small percent of the population choosing not to immunize their child, parental perceptions about vaccine concerns may change along this continuum and may lead to more parents choosing not to immunize their child.

More States Offering Philosophical Exemptions Parents can choose not to immunize their child in many states as I mentioned earlier. More states are offering philosophical exemptions. Today 19 states offer philosophical exemptions. It is of note that almost 50% of the U.S. population under age 5 lives in a philosophical exemption state.

Morbidity and mortality No memory of Vaccine Preventable Diseases Vaccine safety concern -Media -Lack of info** -Timing of info -Contrary info -Lack of trust -Lack of tailored materials** -Risk misperception -Vaccine AE -Low science literacy School entry requirement-higher standard Personal exemptions This is an overview of what I just said. Vaccine safety concerns are influenced by several factors (media, lack of info, timing of info..). The concerns are perceived in a context of no memory of VPDs, so the benefits of vaccines are not apparent. When concerns reach a certain level, some parents may choose to obtain a personal exemption to immunization. If enough parents make this decision, there could be a loss of herd immunity and increased morbidity and mortality in children. I included the box on the left to indicate that because most states require immunization for school entry, there should be a higher standard for public health and medical professionals to provide the information parents need to feel they are making a good decision about immunizing their child. Loss of herd immunity Morbidity and mortality

Parent Segments Now I would like to talk about our work on segmenting parents in order to provide them with tailored information.

Objective To identify parent types/segments based on immunization and health attitudes and beliefs

Results Using cluster analysis, 5 clusters were identified based on parental attitudes and beliefs about health and immunizations.

Segments 1. Immunization Advocate (n=193, 33.0%) Strong belief in immunization. Don’t believe that immunizations cause serious side effects. Strongly agree that medical professionals have child’s best interest at heart. 2. Go Along to Get Along (n=154, 26.4%) Believe in immunizations. Don’t believe that immunizations cause serious side effects. Agree that medical professionals have child’s best interest at heart.

Segments 3. Health Advocate (n=145, 24.8% ) Believe in immunizations but not sure if immunizations cause side effects. Agree that medical professionals have child’s best interest at heart.

Segments 4. Fencesitter (n=77, 13.2% ) Only slightly believe in immunizations. Not sure if immunizations cause serious side effects. Neutral that medical professionals have child’s best interest at heart. 5. Worried (n=15, 2.6%) Don’t believe in immunizations. Believe that serious side effects occur with immunizations. Slightly disagree that medical professionals have child’s best interest at heart.

Evidence Based Brochure Development We conducted a follow up study

Objectives To tailor educational materials to Fencesitter (13.2%) and Worried (2.6%) parents Gain a better understanding of these 2 segments Obtain feedback on draft educational materials and revised educational materials

Focus Groups 2 rounds Round 1: 18 focus groups in 3 cities Better understand members of segments and obtain their feedback on draft materials Round 2: 12 focus groups in 2 cities Obtain feedback on revised materials So back to the follow up study. We conducted 2 rounds of focus groups

Draft Materials Test and Control Responsibility statement Disease photographs Chiropractor quote Statistics Story CDC name and logo We provided draft materials that varied by one variable so mothers would have something to respond to.

Revised Worried Materials Facts about Immunizations Some brief facts What is in a vaccine? Do vaccines always work? Do children still get these diseases? Are these diseases really serious? What about autism? What about mercury in vaccines? Can vaccines “overload” a child’s immune system? References Based on the feedback from the first round of focus groups, we revised the materials.

Revised Fencesitter Materials Facts about Immunizations Some Brief Facts What is in a vaccine? Do vaccines always work? Do children still get these diseases? Are these diseases really serious? In what case should my child not get vaccinated? Are there long term effects of vaccines? Would my child get a disease if not vaccinated? Is there some kind of natural immunity I could get for my child instead of vaccines? References

Process of Immunizations The Vaccination Process for Children How are vaccines tested? Some brief facts Names of the vaccines Diseases the vaccines prevent What are some serious risks of vaccination? Why do children need so many shots? Why does my child have to get so many vaccines in one visit? Why give my child combination vaccines? Because both parent segments expressed a desire to know more about the vaccination process, we developed a brochure to answer their questions.

Process of Immunizations The Vaccination Process for Children (cont) Why does my child have to get so many doses of the same vaccine? Why does my child have to receive different vaccines at different ages? When should my child not receive a vaccine? Is there some kind of natural immunity I could get for my child instead of vaccines? How can I pay for all the vaccines? References

Toolkit What can physicians do? Screening survey and template Evidence based tailored brochures Facts Process

Next Steps Evaluate effectiveness of materials in 3-5 practices Revise based on feedback Work with other organizations to produce and distribute materials

Phase I of Plan to Address Parental Concerns

Conclusions We, in the U.S. and other developed countries are in a new era, little disease and more vaccine adverse events and are likely to remain there It is important to educate the public about the diseases, the immunizations, safety issues, the concept of herd immunity Build trust (provider-patient, public-government)

We live in a world already benefiting from vaccines that exist AND there is the promise of more to come. The challenge we have now is to make sure that the promise is not lost because we did not present the benefits and risks of vaccines in a way acceptable to the public.