High School STD High School STD Screening: Parental Screening: Parental

Consent and Consent and ConfidentialityConfidentialityMeighan E. Rogers, MPHMeighan E. Rogers, MPH

2008 National STD Prevention 2008 National STD Prevention ConferenceConference

Chicago, IL March 11, 2008Chicago, IL March 11, 2008

OverviewOverview

New York City (NYC) high school STD New York City (NYC) high school STD screening programscreening program ScopeScope ResultsResults

Types of parental consent: Active vs. PassiveTypes of parental consent: Active vs. Passive Parental consent processes utilized across Parental consent processes utilized across

USUS Confidential screening and result Confidential screening and result

distributiondistribution Addressing parental concernsAddressing parental concerns

The findings and conclusions in this presentation are those of the author(s) The findings and conclusions in this presentation are those of the author(s) and do not necessarily represent the views of the CDC/ATSDR.and do not necessarily represent the views of the CDC/ATSDR.

NYC School Screening NYC School Screening ProgramProgram

NYC: 300,000 high school aged studentsNYC: 300,000 high school aged students Program scope: Target public schools, Program scope: Target public schools,

neighborhoods with high STD rates, neighborhoods with high STD rates, ~45% of program schools have school-~45% of program schools have school-based health centers (SBHCs)based health centers (SBHCs)

School wide education, voluntary School wide education, voluntary confidential urine CT/GC testingconfidential urine CT/GC testing

Began Spring 2006 - 5 pilot schoolsBegan Spring 2006 - 5 pilot schools 2007 (Current) school year: 2007 (Current) school year:

Goal: Educate 30,000 youth, test 15,000Goal: Educate 30,000 youth, test 15,000 7 full time program staff7 full time program staff

NYC School Screening NYC School Screening Program ResultsProgram Results

2006 school year: 2006 school year: Educated 9500 students (44 schools)Educated 9500 students (44 schools) Tested 4,375 (47%)Tested 4,375 (47%) 209 positive (4.8%); 99% treated209 positive (4.8%); 99% treated

2007 (current) school year YTD: 2007 (current) school year YTD: Educated 10,561 (~50 schools)Educated 10,561 (~50 schools) Tested 5178 (49%)Tested 5178 (49%) 400 positive (7.7%); 92% treated to 400 positive (7.7%); 92% treated to

date, ongoingdate, ongoing

NYC CT/GC Positivity, 2007-NYC CT/GC Positivity, 2007-20082008

* Difference between males & females significant at p<.0001

Approaches to Parental Approaches to Parental InvolvementInvolvement

Active consentActive consent Passive consentPassive consent Notification – parents are notified Notification – parents are notified

that the program will take place, are that the program will take place, are not given option to opt-out not given option to opt-out

Active Consent – “Opt-in”Active Consent – “Opt-in” Requires all parents to return consent Requires all parents to return consent

indicating whether they want their child to indicating whether they want their child to participateparticipate

If consent form not returned, assume refusal If consent form not returned, assume refusal

Disadvantages:Disadvantages: Lowers response rates/limits participation (40-Lowers response rates/limits participation (40-

70%), can limit accuracy, completeness of data 70%), can limit accuracy, completeness of data and reachand reach

Non-response may indicate disinterest rather Non-response may indicate disinterest rather than oppositionthan opposition

Costly, time consuming to ensure responseCostly, time consuming to ensure response

Active Consent (Cont)Active Consent (Cont)

Disadvantages:Disadvantages: Selection bias- certain groups more Selection bias- certain groups more

or less likely to respond or less likely to respond Under-represents minorities; students Under-represents minorities; students

of parents with alcohol or substance of parents with alcohol or substance abuse problemsabuse problems

Over-represents students with higher Over-represents students with higher SES, 2 parent families SES, 2 parent families

Passive Consent - “Opt-Passive Consent - “Opt-out”out”

Requires parents to respond only if they do Requires parents to respond only if they do not want their child to participate not want their child to participate

Non-response is an affirmative responseNon-response is an affirmative response Secures higher response rates (avg 80-96%) Secures higher response rates (avg 80-96%) Ethical method of holding up informed consent Ethical method of holding up informed consent

principles while securing higher participationprinciples while securing higher participationDisadvantages:Disadvantages: Non-response may indicate agreement or Non-response may indicate agreement or

apathyapathy Low health literacy, language barriers Low health literacy, language barriers

obstacles to assuring parental understandingobstacles to assuring parental understanding

State Laws – STI ServicesState Laws – STI Services

All 50 states, and Wash DC, allow All 50 states, and Wash DC, allow minors (under age 18*) to consent to STI diagnosis and treatment services without parental consent/involvement Louisiana and Maryland p physicians are allowed

to inform the minor’s parents about STI services if in minor’s best interests

SBHCs require parental consent for SBHCs require parental consent for students to access services, however some students to access services, however some will still screen for sexual/repro health will still screen for sexual/repro health services under state lawservices under state law

* While no minimum age is specified, a child younger than 12 years would not beconsidered to have the capacity for informed consent

Consent Processes Utilized Consent Processes Utilized for School STD Screening for School STD Screening

Across USAcross US BaltimoreBaltimore: Program conducted through : Program conducted through

SBHCsSBHCs SBHCs agreed to screen/treat for STIs without SBHCs agreed to screen/treat for STIs without

parental consent, under Maryland state lawparental consent, under Maryland state law

New Orleans:New Orleans: Active consent process Active consent process School officials and IRB require active parental School officials and IRB require active parental

consent, despite state lawconsent, despite state law STD program distributes written consent through STD program distributes written consent through

students students If not returned, parents called by STD staff to elicit If not returned, parents called by STD staff to elicit

consentconsent Parental consent rates between 50-75%Parental consent rates between 50-75%

Consent Processes Utilized Consent Processes Utilized for School STD Screening for School STD Screening

Across USAcross US Philadelphia:Philadelphia: City-wide parental notification City-wide parental notification

Approved as non-research, not reviewed by IRBApproved as non-research, not reviewed by IRB Letters, signed by Health Commissioner and CEO of Letters, signed by Health Commissioner and CEO of

Schools, sent out to parents by schools Schools, sent out to parents by schools

NYC:NYC: Passive consent process Passive consent process Despite NYS law, Dept of Ed IRB mandated passive Despite NYS law, Dept of Ed IRB mandated passive

consent consent Schools conduct consenting process. If opted out, Schools conduct consenting process. If opted out,

school responsible for prohibiting student’s school responsible for prohibiting student’s participation participation

Secures high participation rates (Range ~95-Secures high participation rates (Range ~95-100%)100%)

NYC Passive Consent NYC Passive Consent LetterLetterT H E C IT Y OF NE W Y OR K

D E P AR T M E N T O F H E AL T H AN D M E N T AL H Y G IE N E

Michael R. Bloomberg Thomas R. Frieden, M.D., M.P.H. Mayor Commissioner

_______________________________________________________________ nyc.gov/ health

January 8, 2008 Dear Parent/Guardian, Sexually transmitted diseases (STDs) are a growing health problem for New York City’s teenagers. In 2006, 15- to 19-year-olds accounted for about 1 in every 3 chlamydia cases. Last school-year, 39 local high schools participated in our STD testing program, and approximately 1 out of every 14 participating teenage female was infected by chlamydia or gonorrhea; 3% of participating males also tested positive. Chlamydia, gonorrhea, and other STDs may have no symptoms. The only way most people know they are infected is if they get tested. But left untreated, STDs can cause serious damage that can make it hard or even impossible to have children in the future. Having an STD also makes it easier to get or spread HIV. Concerned about the future health of young New Yorkers, the New York City Department of Health and the Department of Education are offering an STD testing program for high school students. We will be at your child’s school this year (along with 70 other high schools!). Taking the STD test is totally voluntary. . During our program, students learn about STDs, including how to prevent them, and then get the chance to take a free urine test for chlamydia and gonorrhea. Anyone who tests positive for either infection receives free treatment – a single dose of antibiotics taken by mouth: either Azithromycin (Zithromax) or Cefixime (Suprax). As required by law, the Health Department keeps test results and treatment records confidential. Only the student – not the school or parents – has access to this information. If they wish, students may share their testing information with the school’s health clinic, if applicable. All students can benefit from our program! Whether or not they choose to be tested, they all get important health information to help prevent STDs in the future. We hope your son or daughter will participate. However, if you do not want them to, please tear off the below form and return it to the Principal. If you have questions, or would like us to note your child’s allergies, please contact Sophie Nurani at the Department of Health at 212-788-4450. Sincerely,

Susan Blank, MD, MPH Assistant Commissioner NYC Department of Health and Mental Hygiene ---------------------------------------------------------------------------------------------------------------------------------- □ I do not want my child to participate in STD education and testing at school. Name of Student: ____________________________ Student’s OSIS Number: __________________ Parent’s Signature: ________________________________

Consent Processes Utilized Consent Processes Utilized for School STD Screening for School STD Screening

across USacross US Indian Health Service:Indian Health Service: Consent Consent

process dictated by tribeprocess dictated by tribe Minors Minors >> 12 able to consent by law, 12 able to consent by law,

however tribe dictates type of consent however tribe dictates type of consent requiredrequired

Most recent tribe required active Most recent tribe required active consentconsent Consent forms sent home by schoolConsent forms sent home by school Low participation rates, returned forms Low participation rates, returned forms

mostly declinesmostly declines

Screening – Ensuring Screening – Ensuring ConfidentialityConfidentiality

Baltimore/New OrleansBaltimore/New Orleans: : Testing conducted individually in SBHCs, Testing conducted individually in SBHCs,

confidentiality less of an issue, not mass screeningconfidentiality less of an issue, not mass screening Philadelphia/NYCPhiladelphia/NYC: :

All students participate in education piece, All students participate in education piece, complete demographic infocomplete demographic info

All students taken to bathrooms for voluntary, All students taken to bathrooms for voluntary, confidential testing, all submit test kits (in bag) confidential testing, all submit test kits (in bag) whether specimen or not whether specimen or not

IHSIHS:: Site specific: some sites conduct testing Site specific: some sites conduct testing

individually Interested in using mass screening individually Interested in using mass screening Philadelphia/NYC modelPhiladelphia/NYC model

NYC Screening MaterialsNYC Screening Materials

Confidentiality of Test Confidentiality of Test ResultsResults

Test results Test results only only given to individual student given to individual student Philadelphia / NYCPhiladelphia / NYC: Students create a secret : Students create a secret

password; test results given by phone password; test results given by phone New OrleansNew Orleans: :

Until 2000, results given personally in sealed Until 2000, results given personally in sealed envelopes using code numbersenvelopes using code numbers

Since 2000, students access results through Since 2000, students access results through automated phone system using a PIN and automated phone system using a PIN and additional access codeadditional access code

BaltimoreBaltimore: Results given to each student : Results given to each student individually in SBHC, by Nurse/NP individually in SBHC, by Nurse/NP

IHSIHS: Results (positive or negative) given to : Results (positive or negative) given to each student individually by nurseeach student individually by nurse

Parental InvolvementParental Involvement

Attend parent association meetings pre-Attend parent association meetings pre-screening to present program, answer screening to present program, answer questionsquestions

Parental Feedback: Parental Feedback: Often support STD education, testingOften support STD education, testing Concerned about confidentiality of testing Concerned about confidentiality of testing

and treatmentand treatment Interested in obtaining test results Interested in obtaining test results Concerned about treatment without their Concerned about treatment without their

knowledgeknowledge

Managing Parental Managing Parental ConcernsConcerns

Describe law preventing dept health staff Describe law preventing dept health staff from sharing test resultsfrom sharing test results

Explain that while dept health staff Explain that while dept health staff cannot share results, adolescents can cannot share results, adolescents can share their own resultsshare their own results

Encourage parents to have conversations Encourage parents to have conversations with their children prior to/after programwith their children prior to/after program

All students assessed for allergy prior to All students assessed for allergy prior to treatment by NP or MDtreatment by NP or MD

Thank youThank you NYC DOHMH STD Control: Sophie Nurani, Susan NYC DOHMH STD Control: Sophie Nurani, Susan

Blank, Steve Rubin, Julia Schillinger, Kristen Blank, Steve Rubin, Julia Schillinger, Kristen HarveyHarvey

STD Screening Program Staff – Public Health STD Screening Program Staff – Public Health AdvisorsAdvisors

NYC DOHMH Bureau of School HealthNYC DOHMH Bureau of School Health NYC Dept of EducationNYC Dept of Education Fund for Public Health in NY/NY Community TrustFund for Public Health in NY/NY Community Trust

Contact InfoContact Info: : mrogers@health.nyc.gov, 212-788-, 212-788-44284428