The challenges to ophthalmologic follow-up care inat-risk pediatric populationsSummer Williams, MD,a Brynn N. Wajda, MD,a Rizwan Alvi, MD,b Colleen McCauley,c

Sarah Martinez-Helfman,d and Alex V. Levin, MD, MHSca,b,d

PURPOSE To identify barriers to ophthalmological follow-up in high-risk children who are identified

Author affiliations: aJefferson MPhiladelphia, Pennsylvania; bWiCitizens for Children and YouthPartnership, Eagles Eye Mobile,Funded in part by the FoerderSubmitted June 6, 2012.Revision accepted November 5Correspondence: Alex V. Levin

Street, Philadelphia, PA 19107Copyright � 2013 by the Am

Strabismus.1091-8531/$36.00http://dx.doi.org/10.1016/j.ja

140

by vision screening and eye examination.

METHODS The records of patients identified as needing follow-up through two free eye care programs

(organized optometric and ophthalmologic screening sessions aimed at identifying andtreating ocular pathology) targeted toward inner-city youths of low socioeconomic statuswere reviewed. Parents were contacted by phone, and a questionnaire on barriers to follow-up was administered. Callers attempted to schedule appointments at that time. Data wereassessed by means of descriptive analysis.

RESULTS Of 93 patients, 54 (58%), were successfully contacted. Of these, 23 (25%) were eventu-

ally scheduled. Five (5%) patients elected follow-up elsewhere. Twenty (22%) withworking phones were still unable to be scheduled. Additional obstacles included fami-lies’ lack of awareness of the need for follow-up (13%), assumption by families thatthey would be contacted (5%), scheduling conflicts (4%), concerns about insurance,and difficulty finalizing referrals (2%). A total of 39 patients (42%) were not successfullycontacted because of inoperable phone services, and none of the families responded tothe mailed questionnaire.

CONCLUSIONS Inability to contact families was the greatest barrier to follow-up. Our findings suggest that

immediate arrangement of follow-up care, on-site visual assessment, and a program direc-tor may be useful in increasing follow-up for high-risk children. ( J AAPOS 2013;17:140-143)

During development, more than 80% of a child’slearning in school is attained via their vision.1

Consequently, timely identification of impaired

hardship. It has been found that Hispanic and African-American populations suffer more instances of visual im-pairment than the general population.4 This risk associated

vision is essential to education.2 Since 1957, Pennsylvanialaw has required annual vision screening in public schools.Although greater than 80% of children are successfullyscreened, Philadelphia’s Public Citizens for Children andYouth found that 63% of children who fail a school visionscreening do not receive the ophthalmologic follow-upthat they need.3 Within Philadelphia, approximately158,000 school-aged children are enrolled in Medical As-sistance programs. An additional 20,000 are enrolled inthe Child’s Health Insurance Program for children fromfamilies with low to moderate incomes.3 Like many cities,Philadelphia has known racial disparity and socioeconomic

edical College of Thomas Jefferson University,lls Eye Institute, Philadelphia, Pennsylvania; cPublic(PCCY), Philadelphia, Pennsylvania; dEagle YouthPhiladelphia, Pennsylvaniaer Fund.

, 2012., MD,MHSc,Wills Eye Institute, Ste. 1210, 840Walnut-5109 (email: alevin@willseye.org).erican Association for Pediatric Ophthalmology and

apos.2012.11.021

with racial and financial disparity is further supported bya Minnesota study in which focus groups were formed toidentify barriers to ophthalmological follow-up.2 Racialand financial discrimination played an important role inthe ability to receive prompt eye care.

Programs such as Give Kids Sight Day and the EaglesEye Mobile have been instituted to address the gap in eyecare. Their goal is to make comprehensive vision care ac-cessible to these low-income, underinsured, and uninsuredchildren who are considered at high risk for unaddressedmedical problems. These nongovernment programs serveto screen for and identify visual and other ocular pathology.They also provide many of the resources for subsequenttherapy and treatment. The purpose of this study was toidentify the specific barriers impeding ophthalmologicalfollow-up care in these children.

Methods

Give Kids Sight Day is an annual one-day event held at Wills Eye

Institute and JeffersonMedical College of Thomas JeffersonUni-

versity that allows any child (\19 years old), accompanied by

a parent, legal guardian, or other adult responsible for their

Journal of AAPOS

Volume 17 Number 2 / April 2013 Williams et al 141

care, to obtain free eye care. Contact information is obtained us-

ing a registration form (e-Supplement 1, available at jaapos.org).

Initial patient screenings for children .5 years old were per-

formed by trained medical professionals who tested visual acuity

with the use of Snellen or picture charts, stereopsis using Titmus

Stereo Fly, and color vision using Ishihara books. Visual acuity

\20/30 in either eye or a difference between the eyes of 2 or

more lines constituted a failed visual acuity screening. For prever-

bal children unable to complete Snellen letters, Allen picture

cards, HOTV, or Sheridan-Gardiner single optotypes, failed vi-

sual acuity screening was determined by fixation preference or

by qualitative subnormal visual response. Patients were not con-

sidered screening failures if they had normal vision but had abnor-

mal results for only stereo testing or color vision unless they had

obvious ocular problems by observation (eg, strabismus) or his-

tory. Children .5 years of age who had subnormal vision were

seen that day by a trained medical professional for a manifest re-

fraction. If vision could be corrected, glasses were provided at no

charge. Children \6 years of age who failed the initial vision

screening or had other apparent ocular concerns were given

a full standard and cycloplegic eye examination. Children .5

years of age whose vision could not be corrected with manifest re-

fraction or who had obvious ocular problems by observation or

history noted by the screeners or refractionists also received

a full standard and cycloplegic eye examination that day.

The Eagles Eye Mobile provides optometric care in the school

yard to children in public school kindergarten through grade 8

who have previously failed a school nurse vision screening and

for whomparental consent for the examination has been obtained.

The optometrist conducts vision testing and full external ocular

examination, including slit-lamp biomicroscopy, direct ophthal-

moscopy, manifest refraction, and, when indicated, cycloplegic

refraction and dilated fundus examination. Children who have

subnormal best-corrected vision by the standards defined above

or any other ocular concern are referred to three pediatric oph-

thalmic clinics in our city, where a full pediatric ophthalmic exam-

ination is conducted in designated sessions (Eagles clinics) to

which the children are bussed during school with chaperones at

no cost to the families. Parents rarely attend these visits, and the

child’s school nurse provides them with a completed lay language

form indicating the nature of their child’s ophthalmological diag-

nosis and requested follow-up interval with a clinic phone number

to call to arrange an appointment. In addition, all parents receive

a copy of the letter dictated to the Eagles Eye Mobile optometrist

by the pediatric ophthalmologist indicating the results of the visit.

Results of the pediatric ophthalmology examination are also en-

tered into the medical records of Wills Eye Institute.

Patients fromGive Kids Sight Day 2010 and Eagles EyeClinics

fromDecember 2010 to February 2011 who were identified as re-

quiring follow-up within 1 year were the subject of this study. Us-

ing the information collected on the Give Kids Sight Day

registration forms and from standard clinic registration for the

Eagles clinic visit, 2 medical students made calls to the families

of these children at intervals ranging from 1 to 4 months after ini-

tial screening. For those with working phone numbers on at least

one call, contact attempts were made until either patients were

scheduled or a maximum of 5 calls had been made. Families

Journal of AAPOS

were designated as either “scheduled” or “unscheduled.” Un-

scheduled designation was given if they had no working phones,

if only voicemail was reached and no reply resulting in an appoint-

ment was received, or if families were spoken to but extenuating

circumstances prevented them from being assigned an appoint-

ment.

Each family contacted by phone was asked questions based on

a script (e-Supplement 2, available at jaapos.org), and efforts were

made to schedule follow-up appointments in accordance with the

family’s availability. Patients were scheduled regardless of

whether they had insurance, but all families with insurance were

asked to obtain a referral from their primary care physician where

applicable. For those not contacted by phone, a letter was drafted

and sent with a copy of the phone script along with a preaddressed

and prestamped return envelope.

Data regarding identified barriers to care that prevented chil-

dren from returning for their recommended follow-up were ana-

lyzed by the use of descriptive analysis. This study was approved

by the Wills Eye Health System Institutional Review Board and

granted an exemption for waiver of consent. All aspects of this

study complied with the Health Insurance Portability and Ac-

countability Act.

Results

A total of 82 children were identified at Give Kids SightDay as requiring follow-up care. The examination recordsof 20 (24%) were found to be incomplete or indecipherableand were thus excluded. Two (2%) did not require follow-up within 1 year. A total of 33 children were identified inour Eagles Clinics as requiring follow-up; none were ex-cluded. The diagnoses made by the pediatric ophthalmol-ogists for all patients are shown in Figure 1.

Of the 60 children from Give Kids Sight Day, 15 (25%)were successfully contacted and scheduled for further careatWills Eye Institute, 3 (5%) were contacted but elected tofollow-up elsewhere, and 42 (70%) who could not be con-tacted by phone were sent letters. Of the 33 children fromthe Eagles Eye Clinics, 8 (24%) were successfully con-tacted and scheduled for further care atWills Eye Institute,2 (6%) elected to follow-up elsewhere, 2 (6%) were foundto need no additional care within the year on chart review,and 21 (64%) were sent letters. For the 5 patients whochose to receive follow-up care elsewhere, one family notedfrustration with scheduling, another noted distance toWills Eye Institute as an obstacle, and the remaining 3 fam-ilies gave no specific explanation. Because of low contactand follow-up rate, we were unable to analyze whetherthere was a relationship between the length of the time in-terval between pediatric ophthalmologist examination andcontact time by the medical students.

Identified barriers to care are shown in Tables 1 and 2.Of the 93 patients, 39 (42%) were found to have unavail-able, invalid, or out-of-service telephone numbers. For20 patients (22%) with working phone numbers, appoint-ments were unable to be arranged because of communica-tion that was restricted to voicemail or because of

FIG 1. Diagnoses of the patients needing follow-up from both Give Kids Sight Day as well as the Eagles Eye Clinics. A total of 50.6% of patients hadtwo or more visual abnormalities.

Table 1. Barriers to care identified by patients scheduled from GiveKids Sight Day (GKSD) and the Eagles Eye Clinics (Eagles)a

Identified barriersGKSD

(n 5 15)Eagles(n 5 8)

Unaware of need for follow-up 8 1Was waiting for a call to establish follow-up 3 1Weekend appointments preferable 2 0Thought they needed insurance to be seen 1 0Conflicts with parents’ work 0 1Repeated unsuccessful effort to schedule

own appointment0 1

No-show to appointment and never rescheduled 1 0None given 0 1Total patient-identified barriers 15 5

aThree patients from the Eagles Eye Clinics were already scheduled;not all families were reached, and some families noted more thanone barrier.

Table 2. Barriers to care identified by unscheduled patients fromGive Kids Sight Day (GKSD) and the Eagles Eye Clinics (Eagles)

Barriers to those unscheduledGKSD

(n 5 45)Eagles

(n 5 25)

Phone numbers unavailable, invalid, or outof service

20 19

Working phone but unable to establishappointment

18 2

Unaware of the need for follow-up 3 0Spanish interpreter needed 3 0Family never finalized PCP referral 1 0Was waiting for a call to establish follow-up 1 0Weekend appointments preferable 1 0Total patient-identified barriersa 47 21

PCP, primary care physician.aNot all families were reached, and some families noted more than onebarrier.

142 Williams et al Volume 17 Number 2 / April 2013

extenuating circumstances, including one parent on housearrest, a parent’s request to consult with his spouse beforeappointment scheduling, and a grandmother who wantedto be certain that a referral from the child’s primary carephysician was in place before scheduling. These particularfamilies were never able to be reached again on later con-tact attempts. Four families identified more than one bar-rier to follow-up.

None of the families from Give Kids Sight Day or theEagles EyeClinics who were sent a letter and questionnaireresponded. This contributed to a total unscheduled rate of66 (71%) for the study.

Discussion

This study focused on an inner-city, pediatric populationwith known socioeconomic hardships considered at-riskfor neglected follow-up care of ophthalmologic diagnoses.By identifying barriers to follow-up, we hope to develop in-terventions that will facilitate a more successful follow-up

regimen. If these barriers are not overcome, the initialeffort to identify these children will have much less effect.

Less than half of the patients were reachable via phone,and over two-thirds failed to be scheduled for follow-up.Although various socioeconomic obstacles were identified,the dominant problems overall were lack of parental aware-ness of the need for follow-up and failed communicationwith families.

From 1985 to 2005, cell phone use in the United Statesexploded from fewer than 500,000 to more than 200 mil-lion.With the drastic increase in cell phone usage,5 screen-ing of calls has become more prevalent, especially “amongyoung adults, those who have never been married, His-panics, African Americans, households with young chil-dren, and those living in more densely populated areas.”6

This widespread adoption of cell phones has led to screen-ing calls, avoiding charges, changing phone numbers, andthe absence of available adults, all of which likely contrib-uted to the difficulties contacting patients that were en-countered in this study.

Journal of AAPOS

Volume 17 Number 2 / April 2013 Williams et al 143

Our findings are consistent with previous reports ac-knowledging that “certain groups are marginalized fromservices and therefore ‘harder to reach.’”7 A report by thePublic Citizens for Children and Youth showed that be-tween 53% and 63% of children fail to receive recommen-ded ophthalmological examination.3 The senior author(A.V.L.) previously led a study on the efficacy of the EaglesEye Mobile program, in which it was found that approxi-mately 50% of children identified in this school-based pro-gram did not attend the recommended pediatricophthalmologic consultation (data not shown). Thesegaps in care existed despite the fact that referrals, schooltime appointments, and transportation with chaperoneswere arranged through the program at no cost to thepatient.A 2006 pilot investigation (that differed from this cur-

rent study largely because of the fact that the visionscreenings were conducted in primary care offices ratherthan on-site at schools) showed barriers such as insuranceconcerns, family priorities, scheduling conflicts, andtransportation issues.8 Regardless of the location of visionscreenings, the literature illustrates that there are numer-ous biopsychosocial barriers that make it difficult forat-risk children to receive ophthalmological follow-up.2,4,9 Additional resources must now be expended notsimply to identify patients in need of care but also toaddress these barriers.Although many potential biopsychosocial elements in-

hibit follow-up care, our study suggests that improvingcommunication must be a priority. Some parents in ourstudy were unaware of the need for or how to obtain a fol-low-up examination. Yawn and colleagues2 also found thatmany parents recommended increased awareness and noti-fication of vision screening and follow-up. A 9-year pro-spective study of 147,809 children in Iowa showed anincrease in rate of follow-up from 36.1% to 89.5% afterhiring a part-time “follow-up coordinator” whose role wasin part to improve direct communication with families.10

To overcome the identified barriers, we are investigatingthe efficacy of placing ophthalmology consultations directlyin the schoolyard using the Wills Eye Institute mobile eyecare unit. For the next Give Kids Sight Day, volunteerswill be formally instructed to verify that registration formshave been fully completed before screening, and effortsmust be made to obtain extensive contact information in-

Journal of AAPOS

cluding multiple phone numbers, alternate contacts, emailaddresses, and physical addresses. In addition, dates will beset aside preemptively for follow-up at Wills Eye Instituteso that appointments can be booked at the time of the pedi-atric ophthalmology examination. Overall, to improve theshortcomings in pediatric eye care, not only is it essentialthat communication protocols be reformed and families bemade aware of their need for follow-up, but more concertedefforts must be made to connect eye care providers withchildren needing further assessment.

Acknowledgments

We thank Donna Shaner for her assistance in facilitating this projectand helping to schedule patients.

References

1. Children’s Vision InformationNetwork. Vision and learning. Beyondglasses and 20/20 vision: Important visual skills your child needs forreading and learning. http://www.childrensvision.com/2020.htm.Accessed August 29 2012.

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3. Public Citizens for Children and Youth. A problem we don’t see: Thestatus of children’s vision health in Philadelphia. Philadelphia, PA:PCCY; 2008. https://www.pccy.org/userfiles/file/ChildHealthWatch/VisionReport2008.pdf. Accessed March 8, 2013.

4. Frazier M, Garces I, Scrinci I, Marsh-Tootle W. Seeking eye care forchildren: Perceptions among Hispanic immigrant parents. J ImmigrMinor Health 2009;11:215-21.

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9. Castanes MS. Major review: The underutilization of vision screening(for amblyopia, optical anomalies and strabismus) among preschoolage children. Binocul Vis Strabismus Q 2003;18:217-32.

10. Longmuir SQ, Pfeifer W, Leon A, Olson RJ, Short L, Scott WE.Nine-year results of a volunteer lay network photoscreening programof 147 809 children using a photoscreener in Iowa. Ophthalmology2010;117:1869-75.