Patient Education and Counseling 39 (2000) 185–189www.elsevier.com/ locate /pateducou

Prenatal sickle cell screening education effect on the follow-uprates of infants with sickle cell trait

a , a,b a,b a a*Yih-Ming Yang , Susan Andrews , Rose Peterson , Arvind Shah , Manuel CepedaaUSA Comprehensive Sickle Cell Center, University of South Alabama College of Medicine, 1504 Springhill Avenue, Room [5230,

Mobile, AL 36604, USAbSickle Cell Association of America, Mobile Chapter, Mobile, AL 36604, USA

Received 6 August 1998; received in revised form 16 October 1998; accepted 22 February 1999

Abstract

Objective: To assess the effect of prenatal education about newborn sickle cell screening on parents’ compliance with thefollow-up for infants with sickle cell trait. Subjects: Expectant mothers whose prenatal education included information aboutnewborn sickle cell screening were the study group, and those whose prenatal education did not include such informationwere the control group. Methods: Mothers of infants with sickle cell trait were given the opportunity for in-personnotification of screening results and follow-up counseling /education. Follow-up rates, anxiety and retention of informationwere assessed for the case-control study. Results: There were a total of 15 670 infants born in the region, and 647 infantswere identified with sickle cell trait. The follow-up rate for parents of infants with sickle cell trait was significantly higher(76%) for study group than the control group (49%) (P 5 0.0006). Parents whose prenatal education included sickle cellhemoglobinopathy information retained significantly more of the information given during the post-natal education than didcontrols. Conclusion: Our data suggest that prenatal education for expectant mothers which includes information aboutnewborn sickle cell screening significantly increases the follow-up rate for infants with sickle cell trait and contributes to agreater retention of information. 2000 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Sickle cell; Prenatal education; Screening; Follow-up

1. Introduction recognized and mandatory newborn screening pro-grams have been established in most of the states in

For infants identified with sickle cell trait and the United States over the past decade [1]. Follow-uprelated hemoglobinopathies, follow-up is essential to for infants with either disease or trait has been lessprovide counseling, education and further family than satisfactory in many of the newborn screeningtesting. The importance of newborn screening is programs [2–5]. The follow-up rate for infants with

sickle cell trait and other hemoglobinopathies rangesfrom 35 to 60 percent nationwide [6–11]. There are*Corresponding author. Tel.: 1 334-405-5115; fax: 1 334-405-

5120. many factors that may contribute to the low follow-

0738-3991/00/$ – see front matter 2000 Elsevier Science Ireland Ltd. All rights reserved.PI I : S0738-3991( 99 )00022-1

186 Y.-M. Yang et al. / Patient Education and Counseling 39 (2000) 185 –189

up rate of infants with sickle cell hemoglobinopathy. tant mothers attended prenatal education class as aThese factors include anticipatory anxiety about routine part of prenatal care. Following delivery,possibly learning that a child has a sickle cell mothers of infants with sickle cell trait from bothhemoglobinopathy, fear of being blamed for causing groups were notified by the Sickle Cell Associationthe sickle cell hemoglobinopathy and denial that a of America, Mobile, AL Chapter that screeningchild with medical defect is possible. Factors such as results and counseling /education services were avail-this can contribute to a low follow-up rate. It has able. Mothers attending the notification and counsel-also been postulated that lack of awareness of the ing/education program were asked to volunteer forscreening program’s purpose and importance contri- the anxiety inventory segment of the study. Thosebutes to the low compliance with follow-up [12]. volunteering completed the State Trait Anxiety In-

It is reasonable to believe that the follow-up rate ventory (STAI) prior to the notification and counsel-may be improved when the mothers of infants with ing /education session. All mothers attending thesickle cell hemoglobinopathies are made aware of session were given a pre-test to evaluate theirthe purpose and importance of the screening program knowledge of sickle cell trait and disease prior to theduring prenatal education sessions. These sessions counseling /education session and a post-test whichshould help allay common anxieties and fears about was given after counseling /education to assess re-sickle cell hemoglobinopathies which might adverse- tention of information from the session. The STAIly effect the follow-up rate. However, there has been scores were compared between the mothers who hadno data or documentation to support this belief. received prenatal sickle cell education (study group)

We conducted a case-control study to assess the and those who did not (control group). Additionally,effects of prenatal education about sickle cell screen- pre-test and post-test scores were assessed for signifi-ing for expectant mothers on: (1) the follow-up rate cant differences between the mothers who hadof infants identified with sickle cell trait, (2) the received prenatal sickle cell screening educationanxiety level associated with attendance at post-natal (study group) and those who did not (control group).counseling and education sessions about sickle cell The percentage of those subjects attending educa-disease, and (3) the retention of knowledge about tion sessions in the study and control group thatsickle cell trait and disease for mothers attending the subsequently delivered a child with sickle cell traitpost-natal counseling /education sessions. were compared for significant differences using

Pearson’s chi-square test for equality of proportions.The State Anxiety scores, Trait Anxiety scores, pre-

2. Subjects and methods test scores and post-test scores for the study andcontrol groups were compared for significant differ-

Mothers who received prenatal education about ence using the two-group t test. The statisticalnewborn sickle cell screening as a part of routine analyses were performed using the SAS (Statisticalprenatal care while attending prenatal clinics were Analysis System) software.designated the study group. The education materialspresented to the expectant mothers included (1) therole that red cells and hemoglobin play in the human 3. Resultsbody, (2) the causes of sickle cell disease, (3)consequences and complications of sickle cell dis- The study period was from May 1993 throughease, (4) how sickle cell trait and disease differ, (5) October 1995 (18 months). The study group whichhereditary and affected population information (6) received information about sickle cell newbornthe importance of newborn sickle cell screening. The screenings included 1080 expectant mothers. Fromprenatal sickle cell education came from a 10-minute the group receiving prenatal education on sickle celleducation videotape specifically produced for this newborn screening, 41 infants were subsequentlytarget population. Those attending prenatal clinics born with sickle cell trait. Thirty-one mothers ofthat did not have prenatal education about sickle cell infants with trait attended the post-natal counseling /screening available (yet did have other prenatal educational session (see Fig. 1 and Table 1). Theeducation programs) were the control group. Expec- follow-up rate was 76% (31/41).

Y.-M. Yang et al. / Patient Education and Counseling 39 (2000) 185 –189 187

Fig. 1. Overall flow chart of the study. An overview of the study is presented in the flow chart. Results of the study are included. ‘‘n’’indicates number of subjects included in the study or observed at each step of study.

In the control group, there were 14 590 mothers and 39.8 in study and control groups respectivelywho did not receive prenatal education about new- (P 5 0.6101). The mean pre-test scores were 60.0born sickle cell screening. From this group, 606 and 58.2 (P 5 0.5788) for the study and controlinfants were identified with sickle cell trait (see Fig. groups respectively. The mean post-test scores were1). Of these, 294 mothers of infants with trait 87.4 and 79.4 in study groups and control groupsattended the post-natal counseling /education session (P 5 0.0018) (see Table 1).(see Table 1). The follow-up rate was 49% (294/606) (see Fig. 1 and Table 1). The differences inattendance between the study group and control 4. Discussiongroup was significant (P 5 0.0006).

The mean State Anxiety scores were 38.9 and 40.3 Our data suggest that a brief (10 minute) prenatalin study and control groups respectively (P 5 education video about screening (study group) for0.4958). The mean Trait Anxiety scores were 40.8 sickle cell disease significantly increases the follow-

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Table 1 each center and was not a ‘‘separate’’ or ‘‘volunteer’’Comparison of percent expectant mothers attending education activity. Thus we do not think that the higher follow-sessions, average state and trait anxiety scores, and pre- and

up rate can be accounted for by postulating that onlypost-test scores between the prenatal education and control groupsmothers with a higher interest or known concern

Study Control P Value (who might be expected to ‘‘volunteer’’ to attendgroup group

sessions on sickle cell screening) accounted for theTotal number 1080 14 590 increase in follow-up rate.Number with 41 606 Even though the mothers attending the prenatalsickle cell trait education session on sickle cell screening receivedNumber attending 31 294 some factual information about sickle cell trait andeducation sessions disease, by the time they attended the counseling /

educational session for parents of newborns withPercent attending 76% 49% 0.0006education sessions trait, their knowledge of sickle cell trait and disease

was not superior to that of parents who had notState Anxiety score 38.9 40.3 0.4958attended the prenatal sessions. However, as demon-

Trait Anxiety score 40.8 39.8 0.6101strated by significantly higher post-test scores, it

Pre-Test score 60.0 58.2 0.5788 appears that those attending the prenatal sessionPost-Test score 87.4 79.4 0.0018 retained more of the information that was presented

in the educational sessions than did those who hadnot attended sickle cell prenatal education (P 5

up rate in infants identified with sickle cell trait by 0.0018). This points out the importance of repeatingnewborn screening. Some three-quarters (76%) of information for retention of knowledge to take place.parents of children subsequently born with sickle cell The lack of a significant difference between STAItrait who had prenatal education about the purpose of scores for the prenatal education and control groupsnewborn screening (study group) chose to attend the suggests that prenatal sickle cell screening educationpost-natal notification and counseling /education ses- neither reduces anxiety or leads to increased anxietysion about sickle cell disease and trait. Just under at the time of notification and counseling /education.half (49%) of the mothers not receiving sickle cell While it is possible that significantly differenteducation prenatally (control group) who subsequent- demographics between the prenatal education andly delivered an infant with sickle cell trait responded control groups could have contributed to the differ-to the opportunity to attend a post-natal notification ence in the state and trait anxiety scores, pre- andand counseling /education session. The higher fol- post-test scores, and percent attending educationlow-up rate for infants with sickle cell trait following sessions between, it is unlikely in our present studyparental prenatal education about sickle cell screen- since this is a case-control study and the demo-ing is likely due to increased awareness of the graphics of the two groups were not subject tosignificance and importance of newborn sickle cell manipulation by the investigators. The demographicsscreens as taught during the prenatal sessions. (race, geographic area and pattern of using medical

The statistical procedures used here do not require facilities) and socio-economic status were very simi-the sample sizes to be equal for the two groups. The lar for all subjects. It is reasonable to assume that thedifference in the sample sizes of the two groups is study and control groups were closely matched.taken into account in the statistical testing (along Compared to phenylketonuria and hypothyroidismwith the corresponding standard errors) of the differ- newborn screening program, sickle cell screening isence between the mean state and trait anxiety scores, relatively new and is less familiar to the generalpre- and post-test scores, and percent attending public. A 10-minute video tape program providingeducation sessions of the two groups. information on newborn sickle cell screening for the

The education about screening for sickle cell expectant mothers during prenatal clinic educationdisease and related hemoglobinopathies was incorpo- sessions is an effective and economical way ofrated into the overall prenatal education program for increasing compliance with postnatal follow-up.

Y.-M. Yang et al. / Patient Education and Counseling 39 (2000) 185 –189 189

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