Interventions to improve patient education regarding multifactorial genetic conditions: A systematic review

RESEARCH REVIEW

Interventions to Improve Patient EducationRegarding Multifactorial Genetic Conditions:A Systematic ReviewKatherine G. Meilleur1,2* and Marguerite T. Littleton-Kearney1

1Johns Hopkins University, School of Nursing, Bethesda, Maryland2National Institutes of Health, Bethesda, Maryland

Received 20 December 2007; Accepted 18 December 2008

The careful education of patients with complex genetic disease is

essential. However, healthcare providers often have limited time

to spend providing thorough genetic education. Furthermore, the

number of healthcare professionals possessing strong genetics

training may be inadequate to meet increasing patient demands.

Due to such constraints, several interventions have been investi-

gated over the past decade to identify potential resources for the

facilitation of this specific type of patient education. This system-

atic literature review of these interventions for patient education

attempts to elucidate the answer to the question: is there sufficient

evidence for best practice for delivering genetic information to

patientswithmultifactorial conditions?Thevarious interventions

(CD-ROM, group counseling, video/decision aid, and miscel-

laneous) were analyzed in terms of quality criteria and achieve-

ment of specific outcomes and were rated according to the Stetler

model for evidence-based practice. Seven main outcomes were

evaluated: (1) objective and subjective knowledge assessment, (2)

psychological measures (general anxiety, depression, stress, can-

cer worry), (3) satisfaction/effectiveness of intervention, (4) time

spent in counseling (time spent on basic genetic information vs.

specific concerns), (5) decision-making/intent to undergo genetic

testing, (6) treatment choice and value of that choice, and, finally

(7) risk perception. Overall, the computer interventions resulted

in more significant findings that were beneficial than any other

category followed by the video category, although the group and

miscellaneous categories did not measure all of the outcomes

reported by the other two categories. Nevertheless, while these

groups had neutral or negative findings in some of the outcomes,

the computer intervention group showed significant improve-

ment in genetics knowledge, psychologicalmeasures, satisfaction/

effectiveness, time spent with counselor, and decision/intent to

undergo testing. Published 2009 Wiley-Liss, Inc.{

Key words: genetic counseling; patient education;multifactorial;

interventions

INTRODUCTION

When faced with the implications of having or developing a genetic

disease andmaking decisions about genetic testing, patients need to

be thoroughly informed. Otherwise, they may not have a

well-established idea of either testing benefits (early detection,

understanding risk, treatment options, prognosis) or risks

(stigmatization, loss of insurability, altered self-image) [Green and

Fost, 1997]. Meanwhile, geneticists, genetic counselors, and genet-

ics nurses who provide genetic education to patients find them-

selves limited in number and time. And, the successful sequencing

of the human genome continually leads to researchers discovering

more genetic diagnoses for patients. Many genetic disorders being

investigated are no longer the result of a single gene mutation but

rather are multifactorial conditions, involving several genes as well

as environmental factors [Collins and McKusick, 2001]. In light of

the importance of empowering patients to make informed deci-

sions about genetic testing in the midst of these changes and

challenges, we searched the literature on experimental studies of

educational interventions for multifactorial conditions in order to

establish an evidence base for best practice. Although educational

materials can in no way substitute fully for sessions with a genetics

health professional, they have many potential benefits, such as

reinforcement of information, increased time for counseling per-

sonal issues, provisionofmultiple viewpoints, decreasing counselor

Published 2009 Wiley-Liss, Inc.{This article is a US Government work and, as such, is in the public domain in the United States of America. 819

*Correspondence to:

Katherine G. Meilleur, National Institute of Neurological Disorders and

Stroke, Neurogenetics Branch, andNational Institute ofNursing Research,

National Institutes of Health, 10 Center Drive, Bldg 10, Rm 5s-219, MSC

1671, Bethesda, MD 20892-1671. E-mail: [email protected]

Published online 16 March 2009 in Wiley InterScience

(www.interscience.wiley.com)

DOI 10.1002/ajmg.a.32723

How to Cite this Article:MeilleurKG, Littleton-Kearney MT. 2009.

Interventions to improve patient education

regardingmultifactorial genetic conditions: A

systematic review.

Am J Med Genet Part A 149A:819–830.

fatigue, and the ability to share information with other family

members [Axillbund et al., 2005].

In this review, we attempt to answer the question: is there

sufficient evidence forbest practice for genetic educationof patients

with multifactorial conditions using specific interventions? The

13 studies we located comprising the evidence base to date generally

compared individualized genetic counseling to an educational

intervention such as a CD-ROM, video, feedback checklist, audio-

tape, or group counseling.

Theoretical FrameworkConstructivist learning theories state that creatingmeaning is based

onprior knowledge, beliefs, andpersonal experience [Mayer, 1996].

Indeed, prior individual understandings combined with new in-

formation form the basis for individual and familial decision-

making and coping. For patients with genetic disease, both

decision-making and coping are of extreme import. Usually genetic

education, which includes information about inheritance patterns,

risks to other family members, genetic testing options, symptoms,

treatment, and prognosis, is delivered by geneticists, genetic coun-

selors, and/or nurses trained in genetics via face to face counseling

with patients who have referred to tertiary care settings. However

minimal time with patients and relatively scarce genetics personnel

pose limitations for the requisite thorough counseling of patients.

Supplemental forms of genetic information, especially once proc-

essed with a genetics health professional, may increase desired

outcomes such as knowledge gain, risk perception, coping with

stress/anxiety, and making informed decisions [Axillbund et al.,

2005]. In turn, these will ideally lead to improved genetic services

and an ultimate reduction of the medical, emotional, and psycho-

logical burden of genetic disease

DATA SEARCH

The following databases containing articles dating back to the years

1949, 1982, 1987, and 1996, respectively, were searched: PubMed,

CINAHL, PsycINFO, and Cochrane. Search terms used included

patient education, genetics, genetic information, genetic counsel-

ing, communication, and risk perception. We initially retrieved

from PubMed 256 articles, from CINAHL 22, from PsycINFO 11,

and from Cochrane 2. Studies cited in the relevant articles and

authors of these articles were searched to obtain additional refer-

ences. All experimental and quasi-experimental trials including

multifactorial conditions that compared one or more patient

education interventions involving genetic information were incor-

porated. Studies of single gene disorders were excluded since

multifactorial conditions require comprehensive patient educa-

tion,whichmay bemore involved, including genetic aswell as other

factors. Because genetic counseling for prenatal conditions is highly

specific, literature involving prenatal counseling was also excluded.

Thirteen studies were identified of which 12 compared interven-

tions for providing genetic education for ovarian and/or breast

cancer and one for cleft lip and palate. The study purposes, designs,

sample characteristics, interventions, outcomes, and quality

criteria (reliability and validity) were noted. A rating was assigned

to each study according to the Stetler model for evidence-based

practice (see Tables I–IV) [Stetler et al., 1998].Our search identified 13 studies addressing 12 trials of one or

more genetic educational interventions meeting the inclusion

criteria. Of these, five investigated the use of a computer

program (CD-ROM, decision aid (DA), or computer kiosk) as a

tool for genetic education. Two studies used a video, and of these

one was a DA (video and brochure), to test their efficacy as genetic

educational methods. Other strategies used to provide genetic

education included; group counseling (three studies), a feedback

checklist completed by the subject for the genetic counselor (same

study as one CD-ROM study), an audiotaped session (one study), a

cognitive-behavioral strategy using problem solving training (one

study) and a breast cancer genetics educational session (one study).

The interventions were then categorized into four groups: CD-

ROM, video, group counseling, and miscellaneous (feedback

checklist, audiotapes, problem solving training, educational

session). Seven main outcomes were evaluated in the 12 studies.

These outcomes included: (1) an objective and subjective genetic

knowledge assessment (baseline, post intervention, follow up/

retention), (2) psychological measures (general anxiety, depres-

sion, stress, cancer worry), (3) satisfaction/effectiveness of

intervention (4) time spent in counseling (time spent on basic

genetic information versus specific concerns), (5) decision-

making/intent to undergo genetic testing, (6) treatment choice

and value of that choice, and, finally (7) risk perception (baseline,

post intervention, and follow up). We noted that no one study

assessed all seven outcomes, but these were found to be the major

categories tested in the trials. Nearly all studies compared these

interventions to the use of genetic counseling alone, the process by

which trained individuals assist patients to understand and adapt to

the numerous implications of having a genetic disease [Resta et al.,

2006].Validitywas consideredgreater for studies using instruments

reputed to be reliable and valid and those published in peer-

reviewed journals. Findings were evaluated based on whether or

not interventions achieved significant changes in outcomes.

Table V depicts the statistically significant differences in outcomes

per intervention type.

Genetic KnowledgeFor the first outcome (genetic knowledge) computer interventions

had the greatest impact, followed by the feedback checklist. Mixed

findings for video interventions were observed in regard to genetic

knowledge. Two randomized control trials of women with a

personal or family history of breast cancer using computer inter-

ventions demonstrated greater improvement in basic genetic un-

derstanding among subjects who viewed the CD-ROM prior to

counseling than those individuals who viewed it following counsel-

ing [Green et al., 2001a, 2004] (Tables I andV). In oneof these trials,

counselors found subjectswho self-administered theCD-ROMhad

abetter understanding of breast cancer heredity during the counsel-

ing session than those who had not [Green et al., 2005].Wang et al.

[2005] reported a significant knowledge improvement for women

at risk for breast or ovarian cancer who completed a feedback

checklist andgave it to the counselor prior to the counseling session,

enabling the counselor to tailor the time tomeet specificneedsof the

820 AMERICAN JOURNAL OF MEDICAL GENETICS PART A

TABLE

I.ComputerInterventions

Primaryauthor,

year

Design

Intervention

Control

group

Major

findings

QR*

Outcomes

measured

Green

etal.

[2005]

RCT

Englishspeaking

wom

en18or

older,

majorityCaucasian,

N¼211

ComputerbasedDA

(CD-Rom

)priorto

GC,N¼106

Yes

Participants

ratedboth

sessionsas

highlyeffective(6.6/7)

asdidcounselors,butless

so( P

¼0.001);lower

risk

for

BRCA1/2

mutationneededsign

less

counsafterCD-ROM

( P¼0.027),nosign

difference

intimeforcounsbetween

high

risk

gps( P

¼0.39);also

counselors

ratedcomputer

groupas

havingsign

better

understof

heredity

( P¼0.03)

andmostcounselors

ableto

tailorto

needs

ofpt

morequicklyregardless

ofrisk

IITimewithcounselor;

effectivenessof

counselingsession,

12specificattributes

ofcounselingsession;

counselors’impressions

Green

etal.

[2004]

Sameas

above

Sameas

above

Yes

Know

ledgeincreasedinboth

groups

regardless

ofrisk

(P<0.001),

improved

know

ledgemoresign

inCD

groupam

onglowrisk

wom

en

( P¼0.03),intentto

test

decreasedsign

afterCD

intervention

inlowrisk

butnot

high

risk

wom

en,lower

decisionalconflictfor

counselorgroup( P

¼0.04),higher

satisfaction

ofdecisionin

counselorgroupam

onglowrisk

wom

en( P

¼0.001),anxiety

decreasedby

counselingbutwithinnormalforallgroups

atbaseline

IIKnow

ledge;risk;intention

tobetested;decisional

conflictandsatisfaction

withdecision;anxiety;

evaluationof

computer

intervention

andGC

Green

etal.

[2001b]

Descriptive

and

qualitative,

partof

larger

RCT

educated,

Englishspeaking

wom

en,18or

older

withfirstdegree

relative

withbreast

ca,

mostlyCaucasian,

N¼72

Interactivecomputer

program

priorto

counseling,N¼29

No

Ingeneral,66%preferredGCover

computer.PreferredGCfor

addressingconcernsanddiscussingoptions(93%);being

sensitive

toem

otionalconcerns,helpingwithdecisionsandlistening

(86%),assuringunderstanding(76%),tellingthem

what

they

needed

toknow

(62%),settingrelaxedtoneandputtingthem

atease

(55%).

Preferredor

neutralaboutcomputerprogram

forlearningat

own

pace

andavoidingem

barrassm

ent(81%),makinggood

use

oftime

andexplaininggeneticsof

breast

ca(62%),treatingpt

asadult(59%),

perception

ofrisk

decreasedaftereither

intervention

amongall

participants

( P<0.007)

IVPreferencesof

computer

versusGC;subjects’

assessmentof

computer

program

aseducational

andcounselingtool;four

open-endedqualquestions

aboutlikes

anddislikes

for

education/counseling

sessions

Green

etal.

[2001a]

Sameas

above

Sameas

above

Yes

Know

ledge/%of

questionscorrectcontrolgp

74%,Counselorgp

92%,

computergp

96%( P

<.0001),intentto

undergotestingpretest

allgps

66%,post

intervention

gpsonly44%(P

<.0002,OR¼2.8,95%

CI1.7-4.9)

IIKnow

ledge;intentto

undergo

genetictesting

Wanget

al.

[2005]

RCT

Mostly

Caucasian,married

wom

en,N¼197

Cd¼50,Feed

¼49,

CDþfeed

¼50

Yes

Ifview

edCD

wom

entook

sign

less

timewithcounselor(F

(1,189)¼

6.35,

P¼0.01),less

timewithoncoliffeedback

toGC(F

(1,188)¼5.42,

P<0.05),know

ledgeimproved

inallgpsbutmeanwas

sign.Higherfor

feedback

gp( P

<0.05),worry

declined

overall,butmorewithCD-ROM

view

ing( P

¼0.06),of

wom

enwho

scored

lowforworry

atbaseline,

ifthey

didnot

view

CD-ROM,theirworry

increasedwhereasthosewho

view

edstayed

low,(P

<0.005)less

likelyto

undergogenetictest

if

view

edCD-ROM( P

<0.01)

IIFace-to-face

timewith

geneticsteam

(GCand

oncologist);know

ledge;

changesinworry

inregard

tobeingpositivefor

mutation;genetictesting

decision

(Continued

)

MEILLEUR AND LITTLETON-KEARNEY 821

subjects. In three studies of subjects at risk for breast/ovarian cancer

and parents of children with cleft lip and palate, no difference in

knowledgewas notedwhen comparing standard genetic counseling

to an educational session, group counseling, or video interventions

[Young et al., 1986; Lerman et al., 1997; Calzone et al., 2005].

However, Cull et al. [1998] observed that the group that viewed a

video prior to standard counseling had a higher objective score of

knowledge, albeit no change in subjective score. In another study

the group reviewing the video and brochure DA felt more knowl-

edgeable and better informed, regardless whether the DA was

applied before or after counseling [Van Roosmalen et al., 2004].

Both of these studies were also performed in women at risk for

breast and ovarian cancer.

Psychological MeasuresSeveral investigators assessed if particular educational interven-

tions resulted in subjects’ improvements in such psychological

outcomes as general anxiety, stress, depression, and cancer worry

when compared to genetic counseling alone and/or no counseling.

Indeed, psychological outcomes of subjects after a genetics consult

improved following exposure to computer interventions, group

psychosocial counseling, problem solving training, and audiotaped

sessions. Women who initially had low anxiety scores at baseline

demonstrated increased worry scores unless they viewed the CD-

ROM [Wang et al., 2005]. In another study of women at risk for

breast cancer, individual counseling and group psychosocial

counseling reduced cancer worry when compared to those who

had no counseling. Group psychosocial counseling alone also

resulted in decreased general anxiety [Bowen et al., 2004]. Psycho-

social counseling differed from most group counseling sessions

because it addressed stress management and problem solving

techniques, which was not a part of the other group counseling

in group intervention trials. Therefore, this formof counselingmay

have similar aspects to the problem solving training, after which the

Center for Epidemiologic Studies Depression Scale (CESD) score

decreased for those who received this miscellaneous intervention

[McInerney-Leo et al., 2004]. The intervention of audiotaping

counseling sessions and then providing the tapes to subjects at risk

for breast cancer afterwards also decreased anxiety and depression

scores [Lobb et al., 2002].

Satisfaction/EffectivenessVideo interventions had the greatest impact on the satisfaction/

effectiveness outcome. Cull et al. [1998] reported that the group

who viewed the video prior to, rather than after, counseling was

more satisfied with information about genetics, breast cancer, and

access to screening. Van Roosmalen et al. [2004] demonstrated that

the DA improved satisfaction with information quality compared

to the group that did not receive the DA. The subjects receiving

computer interventions showed no difference in satisfaction when

compared to untreated control groups. It is of interest that both

were highly effective when rated by counselees and counselors, with

mean score ratings for counselors slightly lower than for counselees

[Green et al., 2005]. Similarly, group counseling and audiotape

interventions revealed no difference in satisfaction between stan-

dard genetic counseling and the intervention [Lobb et al., 2002;

TABLE

I.(Continued)

Primaryauthor,

year

Design

Intervention

Control

group

Major

findings

QR*

Outcom

es

measured

Westm

anet

al.

[2000]

Quasi-experimental

individualwith

hereditary

caand

theirfamily

mem

bers,

N¼1440

Computerkioskto

enter

family

hxdata

followed

bypersonalrisk

ofca

letter

No

Majorityof

people(89%)provided

sufficientinfo

into

kioskto

receiveapersonalrisk

assessmentby

agenetics

professionalintheform

ofaletter;themajorityof

thosewho

received

lettersanddidfollowup

telephoneinterviewremem

bered

receivingthem

(93%)andwhattheirlevelof

risk

was

(72%).

Ninety-five

percentfeltcomfortableusingcomputerkiosk.

Forty-twopercentfelttheirrisk

perception

changed.

Eighty

percentdidnot

change

behavior

asaresultof

risk

assessment

IIIRiskperception

*QualityRating:Stetlermodelforevidence

basedpractice

[Stetler

etal.,1998].

I,meta-analysis;II,individualexperimentalstudy;III,Quasi-experimentalstudy;IV,non-experimentalstudy;V,case

report;VI,expertopinion.

AT,audiotape;BRCA,breast

cancer;Ca,cancer;CD,compact

disk;CESD,centerforepidem

iologicstudiesdepression

scale;CI,confidence

interval;Comp,computer;Couns,counseling;DA,decision

aid;Decr,decreased;Depr,depression;E,

educationsession;EþC,educationwithgeneticcounseling;Educ,education;Eval,evaluation;Feed,feedback

checklist;GC,geneticcounselor;GHQ-30,GoldbergandWilliamsscreen

forclinicallysignificantpsychologicaldisorder;Gp(s),group(s);

HBOC,hereditary

breast

andovariancancer;Hx,history;IES,impact

ofevents

scale;Indiv,individual;Interv,intervention;Know

l,know

ledge;NP,nurse

practitioner;Obj,objective;Oncol,oncologist;OR,odds

ratio;ProphylSurg,prophylacticsurgery;

PST,problem

solvingtraining;Psych,psychological;Pt,patient;RCT,randomized

controlledtrial;Sign,significant;Subj,subjective;Qual,qualitative;Tx,treatm

ent;Tx

pref,treatm

entpreference;Underst,understanding;Vs,versus;WLC,waiting-list

control.


TABLE

II.Group

CounselingInterventions

Primaryauthor,

year

Design

Intervention

Control

group

Major

Findings

QR*

Outcom

esmeasured

Calzoneet

al.

[2005]

RCT

Englishspeaking

wom

enandmen

at

high

risk

forBRCA,

mostlyCaucasian,

N¼142

Group

counselingdone

bygeneticsNP

followed

bybriefindiv

counswith

geneticsNP,N¼71

Yes

Nodifference

inknow

ledgelevel;IESscorehigher

in

ptswithpositive

resultsbutIESreturned

to

baselineby

12months;groupsessiontook

sign

less

time( P

<0.0001);satisfaction

equalin

both

groups,nostat

sign

difference

(0.12–0.45);

preferredmethodequal( P

¼0.82McNem

ar’stest)

IIKnow

ledge

and

psych.distress

measuredat

baseline,

aftereducation

and

counseling,andat

1weekandat

3,6,and

12months;satisfaction

witheduc.andcounseling

aftersession,preferred

methodsolicited

at

3months;secondary

analysisof

timeper

pt

Bow

enet

al.

[2004]

RCT

Generalpublicand

relativesof

wom

en

withbreast

caN¼227

Group

psychosocial

counselingwith

four

tosixother

participants

forfour

2hr

sessions,n¼110;

genetic

counseling(one2hr

sessionand

phonecall),n¼117

Yes

Inboth

interv

gpswom

enreported

high

levels

ofattendance,likingof,andsupportfrom

their

counseling;however

morelikelyto

share

concernsingenet

counssessionthan

gp

session(P

<0.05),both

interv

gpsreported

lower

perceivedrisk

atfollowup

than

control

gp(P

<0.01);both

interv

decrease

worry

versus

ctrlgp

(P<0.01),however

anxietydecreased

sign

onlywithgp

psychosocialcounselling

(P<0.01)

IIPerceived

risk;em

otional

reactions;cancerworry;

reactionsto

counseling;

generalanxietyand

depression

Younget

al.

[1986]

Quasi-experimental

parents

of

childrenwithisolated

(multifactorial)CL/P,

N¼61

Videotape(21),group

counseling

(18),individual/couple

(19)counseling

No

Nosign

difference

b/wgpsformeanpercent

know

ledgescores

atanyof

thethree

timepoints;Geneticcounselingis

underprovided,(89%of

thefamilies

hadnot

hadany),videoandgp

counselingaregenerally

accepted

w/o

loss

ofefficacy,

videocouldenhance

basicgenetic

teachingforCL/P

orotherdisorders,

nopreferredmethodof

counseling

IIPreference

ofmethod;

know

ledge

baseline,

aftercounseling,after

6months;attitudes


basedpractice

[Stetler

etal.,1998].







scale;CI,confidence


aid;Decr,decreased;Depr,depression;E,education

session;EþC,educationwithgeneticcounseling;Educ,education;Eval,evaluation;Feed,feedback


forclinicallysignificantpsychologicaldisorder;Gp(s),group(s);HBOC,

hereditary

breast


ofevents


l,know

ledge;NP,nurse


ratio;ProphylSurg,prophylacticsurgery;PST,

problem



ent;Tx

pref,treatm

entpreference;Underst,understanding;Vs,versus;WLC,waiting-listcontrol.


TABLE

III.VideoInterventions

Primaryauthor,

year

Design

Intervention

Controlgroup

Major

Findings

QR*

Outcomes

measured

Cullet

al.

[1998]

RCT

new

lyreferred

wom

ento

breast

caclinic,N¼128

Videowithbasicinfo

aboutbreast

cagen.and

risk

assessmentbefore

versus

aftercounseling

Yes

Videobefore

spent

sign

less

timewithbreast

surgeon( P

<0.05)butsame

amountwithgeneticist,risk

assessmentsign

more

accurate

byvideobefore

gp

1month

followup

( P<0.05)

(otherwisesamebefore,and

immediatelyafter),videobefore

gpalso

hadsign

better

objbutnot

subjassessmentof

breast

cagenetics

( P<0.001),anxietylevelssame,

GHQ-30same/noincreaseddistress

withvideoshow

n,videobefore

gpsign

moresatisfied

withclinicvisitinterm

sof

info

ongenetics,BRCA,andscreening

( P<0.05)

IITimewithgeneticistand

breastsurgeon;selfeval

oflifetimerisk

ofbreast

ca;subjandobj

understanding

ofbreastca

genetics;

anxiety;presence

of

clinicallysign.psych

disorder;use

ofvideo;

satisfaction

withclinic

VanRoosm

alen

etal.[2004]

RCT

Dutch

speaking,

noprevious

cancer

treatm

ent,N¼372

Decisionaid(DA)

given

2weeks

afterblood

testing,

(brochureandvideogiven)

N¼184,before

test

result

available;N¼47forwom

en

givenDApriorandpositive

BRCA1/2

test

result

Yes

Nosign

difference

betweentwogps

foranxiety,depression,ca

related

distress,andgeneralhealth;DAprior

gpmorelikelyto

choose

prophylsurg

over

geneticscreeningandgave

higher

valueforprophylsurg

option

( P¼0.04,

P¼0.00);nodifferencesforstrengthof

txpreference,decision

uncertainty,or

preference

fordecision-making;wom

enin

DAgp

feltmoreknow

ledgeable,better

inform

ed,also

moresatisfied

withinfo

quality( P

¼0.00,P¼0.00,P¼0.00);DA

priorgp

mademoreaccurate

risk

assessments

for3/8

item

s( P

<0.05),

timingof

DAdidnot

matterforwell-being,

decision,info

relatedoutcom

es,andtx

choice

except

for1/8

item

son

risk

perception

(P<0.05)

IIAnxiety;depression;

cancerrelateddistress;

ratingof

generalhealth

state;txchoice

for

breasts

andovaries;

decisionuncertainty;

preference

for

decision-making;subj

know

ledge;am

ountof

info

received;satisfaction

withinfo;risk

perception


basedpractice

[Stetler

etal.,1998].


Report;VI,expertopinion.





scale;CI,confidence


aid;Decr,decreased;Depr,depression;E,education




hereditary

breast


ofevents


l,know

ledge;NP,nurse



problem



ent;Tx

pref,treatm



TABLE

IV.Miscellaneous

Interventions

Primary

author,year

Design

Intervention

Control

group

Major

Findings

QR*

Outcomes

measured

McInerney-Leo

etal.[2004]

RCT

extended

relativesof

peoplewith

hereditary

breast

and

ovariancancer,N¼212

Problem

solvingtraining

(PST),acognitive-behavioral

intervention

which

teaches

effectivecopingstrategies

for

given

Yes

Testersdecreasedinworry

sign

comparedto

non-testers

(P¼0.015);

indivwithHBOChadgreaterincrease

inbreast

caworries

than

thosewithout

HBOCregardless

ofdecision

totest

ortest

results,(P

<0.001)PSTreduced

depr

sympt

atfollowup

morethan

GC

regardless

ofwhether

ornot

tested

for

mutation(P

¼0.052)andalso

decreased

CESD

sign

more(P

¼0.021),ptswhowere

tested

decreasedsign

inbreast

and

ovarianca

worries

(P¼0.008,0.007)

whileothers

didnot,maintainspsych

health,may

enhance

decision-making

forgenetictesting

IIPsychologicalwell-being;self

esteem

;cancerrelated

symptom

s;breast

caworries;

ovarianca

worries

Lobb

etal.

[2002]

RCT

Englishliteratewom

enattendinganyof

10cancer

clinicsinfour

Australian

states,N¼160

N¼82received

tape

(ofthese,51%listened)

Yes

Morelikelyto

listenifaffected

(P¼0.03),

anxious(P

¼0.01),depressed(P

¼.0.06),

orlowBRCA

geneticsknow

ledge(P

¼0.07);

unaffected

wom

enwho

received

tape

were

less

likelyto

beaccurate

inrisk

perception

(P¼0.05),however

whenonlythose

inaccurate

atbaselinewereincluded,tape

hadnoeffect

(P¼0.21);audiotapedidnot

improvesatisfaction,know

ledge,inform

ation

received,or

expectationsmet,however,for

thosewho

listened

toit,audiotapedid

improveanxiety(P

¼0.02)anddepr

scores

(P¼0.01),only20%of

wom

enfoundtape

satisfactory

and35%extrem

ely

helpfulto

increase

risk

understanding

IIExpectations(pre/post

intervention);BRCA

know

ledge;

psych

measures;risk

perception;

objrisk;satisfaction

withGC;

satisfaction

withaudiotape

Lerm

anet

al.

[1997]

RCT

Wom

enwithat

leastone

firstdegree

relative

with

breast

and/or

ovarian

cancer,N¼400

Educationalinfo

aboutBRCA

1(N

¼128),geneticcounseling

inaddition

toeducationalinfo,

(N¼132)

Yes

Increase

inknow

ledgeinEandEþCgroups

(bothP<0.001),decrease

inWLC

group;onlyEþCgroupshow

edincrease

inperceivedlim

itationsandrisks(P

<0.01)

anddecrease

inperceivedbenefits

(P<0.05);nodifference

intesting

intentionsinEor

EþC(nodifference

inpercentof

individualswithinitial

intentionsto

test

andactuallyproviding

bloodsample)

IIKnow

ledge;perceived

risk;

perceptionof

benefits,lim

its,

risksof

BRCA

onetesting;

intention

tobetested;

provision

ofblood

sample

assurrogatefortestingdecision


basedpractice

[Stetler

etal.,1998].







scale;CI,confidence

interval;Comp,computer;Couns,counseling;DA,decisionaid;Decr,decreased;Depr,depression;E,education




hereditary

breast


ofevents


l,know

ledge;NP,nurse



problem



ent;Tx

pref,treatm



TABLE

V.Statistically

SignificantDifferencesin

Outcomes

PerIntervention

Category

GeneticKnow

ledge

PsychologicalMeasures

Satisfaction/Effectiveness

TimeSpentwithcounselor

Decision/Intentto

undergotesting

Txoption

Riskperception

Computer

Counselors

ratedCD

view

ersas

havinghigher

understandingof

heredity

P¼0.03[Green

etal.,2005]

Know

ledgeincreasedinboth

computerandcounselinggroup,

P<0.001butgreaterincomputer

group,( P

<0.03)[Green

etal.,

2004]know

ledgeforcounselor

group92%,computergroup96%,

controlgroup74%P<0.0001

[Green

etal.,2001a]

Worry

declined

significantlyoverall,

butmorewithCD-ROM

P¼0.06andwom

en

who

scored

lowat

baselineforworry

butdidnot

seeCD

increasedworry

whereas

CDview

ersdidnot,

P<0.005

[Wanget

al.,2005]

Subjects

ratedboth

CD-ROMandstandard

counselingsessionsas

highlyeffective,as

did

counselors,butless

so,

P<0.001comparingboth

meanscoreassessments

[Green

etal.,2005]

Lower

risk

BRCA1/2

subjects

needed

less

individual

counselingtime

post

CD-ROM,P¼0.027

[Green

etal.,2005]

CD-ROMgroup

significantlyless

timewithcounselor,

P¼0.01[W

anget

al.,

2005]

Intentto

undergotesting

66%allgroups,post

intervention

groups

(individual

counselingor

computer)

only44%,P<.0002,

OR¼2.8,95%CI1.7–4.9

[Green

etal.,2001a]

Intentto

test

decr

after

either

interv

forlowbutnot

high-riskwom

en,less

decision

conflictfor

counsinterv

P¼0.04,

andhigher

decision

satisfforlow-riskincouns

gp,P¼0.001[Green

etal.,

2004]less

likelyto

undergo

testingifview

edCD

P<0.01

[Wanget

al.,2005]

Perceptionof

risk

ofBRCA

decreased

aftereither

intervention

[Green

etal.,2004]Levelof

risk

retained

months

later,butnot

followed

bybehavior

change

orhealthcare

appointm

ent

[Westm

an

etal.,2000]

Video/decision

aid

Nodifference

in

know

ledge

precounseling,post

counseling,6month

followup

among

video,individualor

groupcounseling

[Younget

al.,1986]

Videobefore

gphad

better

objectivebut

not

subjective

assessmentof

BRCA

geneticsP<0.001

[Cullet

al.,1998]DA

groupfeltmore

know

ledgeable,

P¼0.00,andbetter

inform

ed,P¼0.00,

than

standard

counseling,timing

ofDAdidnot

matter

[Van

Roosm

alen

etal.,

2004]

Nodifference

inanxiety

orGHQ-30scalefor

distress

[Cullet

al.,

1998]Nodifference

betweenDAgroupand

standard

counseling

groupforanxiety,

depression,ca

relateddistress,

andgeneralhealth,

timingof

DA

didnot

affect

well-being[Van

Roosm

alen

etal.,

2004]

Videobefore

group

moresatisfied

withinform

ation

aboutgenetics,

P<0.05,breast

cancer,

P<0.05,andaccess

to

screeningP<0.05,

than

video

afterconsultation

group[Cullet

al.,

1998]DAgroupfelt

moresatisfied

withinfo

quality,

P¼0.00,timingof

DAdidnot

matter[Van

Roosm

alen

etal.,2004]

Videopriorto

consultationgroup

spentstatistically

significantly

less

timethan

video

post

with

breast

surgeon,

P<0.05,but

sameam

ountwith

geneticist

[Cullet

al.,1998]

Nodifference

fordecision

uncertainty

or

preference

for

decision-making

between

DAgroupand

standard

counseling,

also

timingof

DA

didnot

impact

decision

[Van

Roosm

alen

etal.,2004]

DAgrouplikelyto

choose

prophyl

surg

P¼0.04,

gave

highvaluefor

prophylsurg

option,P¼0.00,

nodiffer

forstrength

oftxpref,timingof

DAdidnot

matterfortxchoice

[Van

Roosm

alen

etal.,2004]

Riskassess

stat

sign

moreaccurate

byvideo

beforegp

after1month

( P<0.05)

(otherwisesamebefore,

andimmediatelyafter)

[Cullet

al.,1998]DA

groupmoreaccurate

for3/8

risk

item

,P<0.05[Van

Roosm

alen

etal.,

2004]

(Continued

)


TABLE

V.(Continued)

GeneticKnow

ledge

PsychologicalMeasures

Satisfaction/Effectiveness

TimeSpentwithcounselor

Decision/Intentto

undergotesting

Txoption

Riskperception

Group Nodifference

in

know

ledge

levelbetween

individualandgroup

counselingsubjects

[Calzoneet

al.,2005]

Nodifference

in

know

ledge

precounseling,

postcounseling,

or6month

followup

amongvideo,individual,

orgroupcounseling

[Younget

al.,1986]

IEShigher

insubjects

withpositive

results

butreturned

to

baselineby

12months

[Calzoneet

al.,2005],

Group

andindividual

counselingdecrease

cancerworry

comparedto

no

counseling,

P<0.01,however

generalanxiety

decreased

significantly

onlywithgroup

psychosocial

counseling,P<0.01

[Bow

enet

al.,

2004]

Nodifference

in

satisfaction

betweengroupand

individual

counselingand

methods

equally

preferred[Calzone

etal.,2005]More

likelyto

share

concernsin

individualthan

groupsession

P<0.05,butno

difference

in

attendance,

likingof

session

andsupportfrom

counseling[Bow

en

etal.,2004]

Subjects

took

significantlyless

timeaftergroup

sessionin

individualcounseling

P<0.0001

[Calzoneet

al.,2005]

Lower

perceived

risk

atfollowupforgroup

andindividualcounseling

compared

tonocounseling

P<0.01[Bow

enet

al.,

2004]

Miscellaneous

Know

ledge

improvem

entfor

feedback

group

significant,P<0.05

[Wanget

al.,

2005]AT

listeners

show

ednochange

inknow

ledgeor

amountof

info

received

[Lobb

etal.,2002],

EandEþ

Cboth

increased

know

ledge(both

P<0.001)

[Lerman

etal.,

1997]

PSTreducedCESD

score,

P¼0.021

[McInerney-Leo

etal.,2004]AT

improved

anxiety

P¼0.02

anddepression

scores

P¼0.01[Lobb

etal.,2002]

ATrevealed

nochange

insatisfaction

or

expectationsbeing

met

[Lobbet

al.,

2002]

Less

timewithoncologist

iffeedback

listgivento

GCP<0.05[W

ang

etal.,2005]

Neither

Enor

EþCchanged

decision

toundergotesting

[Lerman

etal.,1997]

OnlyEþ

Cimproved

risk

andlim

itations

perception( P

<0.01),

butnot

Ealone[Lerman

etal.,1997]





scale;CI,confidence

interval;Comp,computer;Couns,counseling;DA,decisionaid;Decr,decreased;Depr,depression;E,

educationsession;EþC,educationwithgeneticcounseling;Educ,education;Eval,evaluation;Feed,feedback


forclinicallysignificantpsychologicaldisorder;Gp(s),

group(s);HBOC,hereditary

breast


ofevents


l,know

ledge;NP,nurse


ratio;ProphylSurg,

prophylacticsurgery;PST,problem



ent;Tx

pref,treatm

entpreference;Underst,understanding;Vs,

versus;WLC,waiting-listcontrol.


Calzone et al., 2005]. Nevertheless, Bowen et al. [2004] commented

that individuals were more likely to openly share concerns during

individual counseling than in group sessions. Regardless of this

observation, Bowen’s group found no difference in attendance,

appeal of the sessions, or sense of supportiveness of counseling

between individual or group counseling.

Time Spent With CounselorAll four categories of interventions reduced time during ensuing

individual counseling sessions. Green et al. [2005] and Wang et al.

[2005] reported subjects needed less individual counseling after

viewing a CD-ROM, however Green et al. noted this only among

low risk BRCA1/2 subjects. Calzone et al. [2005] likewise found

individual counseling sessions to take less time after the group

counseling intervention. Video intervention prior to individual

counseling resulted in less time in turn with the breast surgeon, but

not in less time with the geneticist [Cull et al., 1998]. Of the

miscellaneous interventions, the feedback checklist, given to the

genetic counselorwho saw thepatientprior to theoncologist, show-

ed adecrease in timeneededwith the oncologist [Wang et al., 2005].

Decision/Intent to Undergo TestingIn three of the four intervention categories, the outcome of

decision-making/intent to undergo genetic testing was measured.

The video intervention and the education session (miscellaneous)

failed to show differences between the intervention group and the

standard counseling group in decision uncertainty, decision-mak-

ing preference [Van Roosmalen et al., 2004], or intent to undergo

testing [Lerman et al., 1997].However,Wang et al. [2005] did find a

decreased intent to undergo testing after viewing the CD. Initially,

Green et al. [2001] noted this same decreased intent to undergo

genetic testing for both groups receiving counseling alone and those

receiving the computer intervention. Yet further studies revealed

decreased intent to undergo testing only among low risk

participants [Green et al., 2004]. However, this follow up study

demonstrated that the women in the counselor group, but not the

CD-ROM group, experienced less decision conflict and, if also low

risk, more satisfaction with their decision [Green et al., 2004].

Treatment OptionThe decision to undergo treatment was onlymeasured by the video

intervention category. Van Roosmalen et al. [2004] found that the

DA group was more likely to choose prophylactic mastectomy or

oophorectomy. In addition, they valued the option of prophylactic

surgerymore than cancer screening. The strength of this preference

did not vary between groups, and the timing of the DA

administration (before or after counseling) did not play a role in

treatment choice.

Risk PerceptionFinally, in every category, risk perception was measured. In two

studies no differencewas found among standard genetic counseling

and group counseling or CD-ROM. Rather, all three of these

interventions decreased excess perception of risk of breast cancer

among subjects [Bowen et al., 2004; Green et al., 2004]. Further-

more, the educational session failed to reduce riskperceptionunless

it was accompanied by genetic counseling [Lerman et al., 1997].

Van Roosmalen et al. [2004] found that the group exposed to the

video DA was more accurate in three out of eight risk assessment

items than the control group. In addition, Cull et al. [1998] found

individuals who watched the video before counseling were more

accurate at assessing their risk 1 month after counseling than those

who viewed the video after counseling. Those who used a computer

kiosk in the lobby or waiting roomof a cancer center to enter family

history of cancer and received a follow up letter of personal risk

assessment were likely to remember their risk status, but unlikely to

change behavior or follow up with a health care provider. This

finding was not compared to a control group receiving standard

care. [Westman et al., 2000].

DISCUSSION

Is there sufficient evidence for best practice for delivering complex

genetic information to patients? Our review suggests that certain

educational interventions do in fact improve various outcomes

related to patient education regarding multifactorial genetic

disease. These interventions may become increasingly helpful to

clinicians and counselors who see many patients and have limited

time and/or genetics training.

Computer/Video InterventionsIn particular, computer-assisted methods, followed by video

methods, appear to be the most beneficial interventions to assist

in providing such genetic education (seeTables I and III).However,

the studies involving group counseling and miscellaneous inter-

ventions did not examine as many outcomes as the computer and

video categories, making comparisons between all of the interven-

tions difficult. While these latter groups had neutral or negative

findings for some of the outcomes, the computer and video

intervention groups exhibited improvement in genetics knowledge,

satisfaction/effectiveness of intervention, and time spent with

counselor. In addition, the computer group had better outcomes

for psychological measures and decision/intent to undergo testing.

While the video intervention category was the only category to

measure all outcomes, it did not change the outcomes of psycho-

logical measures or decision/intent to undergo testing. Only Van

Roosmalen et al. [2004] measured preference for prophylactic

surgery versus cancer screening or undecided. Prophylactic surgery

was consistently preferred and valued as a better option if the DA

had been viewed. Yet, with only one trial studying this, further

research of various interventions’ effect on treatment outcome is

recommended. Instruments used to assess knowledge by Wang et

al. [2005] and anxiety by Green et al. [2004] were previously

validated, but the reliability of the knowledge scale used by Green

et al. [2001a, 2004] and decision aid used by Roosmalen et al.

[2004], although used previously, were not discussed.

Group CounselingFindings for the remaining interventions were varied. For example,

the group counseling intervention category (Table II) revealed


mixed results. Less timewas spent in individual counseling sessions

following group sessions, but the utility of this in practice is

debatable. One psychological measure improved, namely anxiety.

Yet other psychological measures showed no differences when

compared to individual counseling, nor did genetics knowledge,

accuracy of risk perception, or satisfaction/effectiveness. Further-

more, subjects preferred sharing concerns in an individual counsel-

ing setting. Both Calzone et al. [2005] and Bowen et al. [2004]

discussed the adequate reliability of scales used for knowledge and

psychological distress, however, Young et al. [1986] did not

mention the reliability of their scales.

MiscellaneousAlthough miscellaneous interventions (Table IV) offered some

improvement in outcomes, such as time spent with counselor,

knowledge improvement, and decrease in depression and anxiety,

no one miscellaneous intervention changed all three of these out-

comes. The feedback checklist, noteworthy for its practicality,

improved both knowledge and amount of time spent in individual

counseling. Problem solving training was very effective for reduc-

tion of depression, but might be best incorporated into individual

counseling rather than as a separate intervention. Finally, audio-

tapes of sessions showed little promise as an effective intervention.

Audiotapes affected only the outcomes of anxiety and depression,

which are also impactedbyother,more robust interventions such as

CD-ROM and video. Despite being exposed to audiotapes of

counseling sessions, subjects did not always listen to them [Lobb

et al., 2002]. McInerney-Leo et al. [2004], Lobb et al. [2002], and

Lerman et al. [1997]used scaleswith adequate reliability foruse self-

esteem, psychological distress, satisfaction, but depression and

expectations scales showed internal consistency of less than 0.7.

In general, further research is necessary to address the outcome

measurement gaps among these less well-researched interventions.

As the understanding of multifactorial disorders increases, pa-

tients may be able to know their risk for multifactorial genetic

conditions, which involve several genes and environmental factors.

Published experimental trials of such interventions were reviewed,

including CD-ROM/decision aid, group counseling, informative

video, feedback checklist, audio recording of session, problem

solving training, and educational session. Of these, computer

interventions, followed by videos, positively impacted most of the

seven main outcomes evaluated across the studies. These findings

are similar to educational interventions (Video, DA) given to

patients with prostrate cancer, which has an unknown cause to

date. Those with prostrate cancer who viewed a video, booklet, or

decision aid increased in knowledge, decreased in decisional con-

flict, improved in risk perception, decreased in testing intention,

and had no change in satisfaction with the screening decision. No

difference in anxietywasnoted between video, Internet, andwritten

education interventions [Gattellari and Ward, 2003; Taylor et al.,

2006; Watson et al., 2006; Ilic et al., 2008].

Comprehensive genetic education for patients about multifac-

torial conditions is needed, but time and personnel are limited. The

evidence thus argues for the integration of these interventions into

the practice of genetics education for patients with multifactorial

conditions.However, due to the lack of studies in various disorders,

the generalizability of this application may be limited to breast and

ovarian cancer and cleft lip and palate. Other limitations of the

studies included the lack of the investigation into the ultimate

outcomes of genetic education such as the reduction of themedical,

emotional, and psychological burden of genetic disease. For exam-

ple, Van Roosmalen et al. [2004] found that subjects who were

administered theDAoverwhelmingly chose prophylactic surgery as

a treatment option. Further research is needed to elaborate whether

patient education increases uptake of cancer screening or prophy-

lactic surgery, in turn leading to a reduction in cancer risk. The

impact of anxiety on knowledge retention is also an important

question for future research.

In addition to pursuing research for areas which have not been

fully investigatedby all of the above interventions, standardizing the

CD-ROM and video interventions for regular use may be a helpful

next step toward their implementation. Ideally, materials would be

created that are appropriate and unbiased, with short, organized

sections based on learning theory. Barriers such as lack of space or

equipment and the inability of clients to ask questions also need to

be considered [Axillbund et al., 2005]. Nevertheless, according

to the evidence in these trials, having such tools readily available

for counselors and clinicians may reduce the time needed

to explain to patients their condition and its implications. Accord-

ing to the evidence to date, these tools may improve patient care

in regard to comprehension of their condition, decreased

anxiety and depression, improved risk perception and decision-

making, andgreater satisfactionwith visits. Evenmore importantly,

these in turn may help reduce the medical, emotional, psycho-

logical, and social burden of genetic disease and improve delivery

of medical genetic services, two ultimate goals of genetics health

care.

In summary we determined that the investigations do substan-

tiate the integration of computer interventions such as CD-ROM

into patient education for multifactorial conditions due to im-

proved outcomes in genetics knowledge, psychological measures,

satisfaction/effectiveness, time spent with counselor, and decision/

intent to undergo testing. Further research is needed to evaluate

whether these outcomes ultimately improve genetic services and

increase patient screening uptake in such a way as to reduce genetic

disease risk and burden.

REFERENCES

Axillbund JE, Hamby LA, Thompson DB, Olsen SJ, Griffin CA. 2005.Assessment of the use and feasibility of video to supplement the geneticcounseling process: A cancer genetic counseling perspective. J GenetCouns 14:235–243.

Bowen DJ, Burke W, McTiernan A, Yasui Y, Andersen MR. 2004. Breastcancer risk counseling improves women’s functioning. Patient EducCouns 53:79–86.

Calzone KA, Prindiville SA, Jourkiv O, Jenkins J, DeCarvalho M, Waller-stedt DB, Liewehr DJ, Steinberg SM, Soballe PW, Lipkowitz S, Klein P,Kirsch IR. 2005. Randomized comparison of group versus individualgenetic education and counseling for familial breast and/or ovariancancer. J Clin Oncol 23:3455–3464.

Collins FS,McKusickVA. 2001. Implications of the human genomeprojectfor medical science. JAMA 285:540–544.


Cull A, Miller H, Porterfield T, Mackay J, Anderson ED, Steel CM, EltonRA. 1998. The use of videotaped information in cancer genetic counsel-ing: A randomized evaluation study. Br J Cancer 77:830–837.

Gattellari M, Ward JE. 2003. Does evidence-based information aboutscreening for prostate cancer enhance consumer decision-making? Arandomized controlled trial. J Med Screen 10:27–39.

Green MJ, Fost N. 1997. An interactive computer program for educatingand counseling patients about genetic susceptibility to breast cancer.J Cancer Educ 12:204–208.

Green MJ, Biesecker BB, McInerney AM, Mauger D, Fost N. 2001a. Aninteractive computer program can effectively educate patients aboutgenetic testing for breast cancer susceptibility. Am J Med Genet 103:16–23.

Green MJ, McInerney AM, Biesecker BB, Fost N. 2001b. Education aboutgenetic testing for breast cancer susceptibility: Patient preferences for acomputer program or genetic counselor. Am J Med Genet 103:24–31.

GreenMJ, Peterson SK, Baker MW, Harper GR, Friedman LC, RubinsteinWS, Mauger DT. 2004. Effect of a computer-based decision aid onknowledge, perceptions, and intentions about genetic testing for breastcancer susceptibility: A randomized controlled trial. JAMA 292:442–452.

GreenMJ, Peterson SK, Baker MW, Friedman LC, Harper GR, RubinsteinWS, Peters JA, Mauger DT. 2005. Use of an educational computerprogrambefore genetic counseling for breast cancer susceptibility: Effectson duration and content of counseling sessions. Genet Med 7:221–229.

IlicD, EgbertsK,McKenzie JE,RisbridgerG,Green S. 2008. Informingmenabout prostate cancer screening; a randomized controlled trial of patienteducation materials. J Gen Intern Med 23:466–471.

Lerman C, Biesecker B, Benkendorf JL, Kerner J, Gomez-Caminero A,Hughes C, Reed MM. 1997. Controlled trial of pretest education ap-proaches to enhance informed decision-making for BRCA1 gene testing.J Natl Cancer Inst 89:148–157.

Lobb E, Butow P, Meiser B, Barratt A, Kirk J, Gattas M, Haan E, Tucker K.2002. The use of audiotapes in consultations with women from high-riskbreast cancer families: A randomized trial. J Med Genet 39:697–703.

Mayer R. 1996. Learners as information processors: Legacies and limita-tions of educational psychology’s second metaphor. Educ Psychol31:151–162.

McInerney-Leo A, Biesecker BB, Hadley DW, Kase RG, Giambarresi TR,Johnson E, LermanC, Struewing JP. 2004. BRCA1/2 testing in hereditarybreast and ovarian cancer families: Effectiveness of problem-solvingtraining as a counseling intervention. Am J Med Genet A 130:221–227.

Resta R, Biesecker BB, Bennett RL, Blum S, Hahn SE, Strecker MN,Williams JL. 2006. A new definition of genetic counseling: nationalsociety of genetic counselors task force report. J Gen Couns 15:77–83.

Stetler CB, Morsi D, Rucki S, Broughton S, Corrigan B, Fitzgerald J,Giuliano K, Havener P, Sheridan EA. 1998. Utilization-focused integra-tive reviews in a nursing service. Appl Nurs Res 11:195–206.

Taylor KL, Davis JL III, Turner RO, Johnson L, Schwartz MD, Kerner JF,LeakC. 2006. EducatingAfricanAmericanmen about the prostate cancerscreening dilemma: A randomized intervention. Cancer Epidemiol Bio-markers Prev 15:2179–2188.

Van Roosmalen MS, Stalmeier PF, Verhoef LC, Hoekstra-Weebers JE,Oosterwijk JC, Hoogerbrugge N, Moog U, van Daal WA. 2004. Rand-omised trial of a decision aid and its timing for women being tested for aBRCA1/2 mutation. Br J Cancer 90:333–342.

Wang C, Gonzalez R, Milliron KJ, Strecher VJ, Merajver SD. 2005. Geneticcounseling for BRCA1/2: A randomized controlled trial of two strategiesto facilitate the education and counseling process. Am J Med Genet A134A:66–73.

Watson E, Hewitson P, Brett J, Bukach C, Evans R, Edwards A, Elwyn G,Cargill A, Austoker J. 2006. Informed decision-making and prostatespecific antigen (PSA) testing for prostate cancer: A randomized con-trolled trial exploring the impact of a brief patient decision aid on men’sknowledge, attitudes, and intention to be tested. Patient Educ Couns63:367–379.

Westman J, Hampel H, Bradley T. 2000. Efficacy of a touch screencomputer based family cancer history questionnaire and subsequentcancer risk assessment. J Med Genet 37:354–360.

Young RS, Jorgenson RJ, Shapiro SD. 1986. Efficacy of and patientpreference for three counseling formats. J Craniofac Genet Dev Biol6:3–14.


Documents

Interventions to improve patient education regarding multifactorial genetic conditions: A systematic review