Advances in Nursing

Volume 2014 (2014), Article ID 725968, 19 pages

http://dx.doi.org/10.1155/2014/725968

Review Article

Effectiveness of the Interventions Utilized in Genetic Counseling

Jeeyae Choi¹ and Hyeoneui Kim²

¹College of Nursing, University of Wisconsin-Milwaukee, 1921 E. Hartford Avenue, Cunningham Hall Room 685, Milwaukee, WI 53211-3060, USA

²Division of Biomedical Informatics, Department of Medicine, University of California, San Diego, 9500 Gilman Drive No. 0728, Building 2, La Jolla, CA 92093-0728, USA

Received 12 April 2014; Revised 11 June 2014; Accepted 12 June 2014; Published 3 July 2014

Academic Editor: Caroline Sanders

Copyright © 2014 Jeeyae Choi and Hyeoneui Kim. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract.

Background. Advances in genetic science and biotechnology accumulated huge knowledge of genes and various genetic tests and diagnostic tools for healthcare providers including nurses. Genetic counseling became important to assist patients making decisions about obtaining genetic testing or preventive measures. Method. This review was conducted to describe the counseling topics, various interventions adopted in genetic counseling, and their effectiveness. Experimental studies () published between 1999 and 2012 were synthesized. Results. The most frequently covered topic was benefits and limitations of genetic testing on breast cancer ovarian and colorectal cancers. Most of researchers focused on evaluating cognitive aspect and psychological well-being. Conclusion. No single intervention was consistently reported to be effective. Decision aids enhanced with information technologies have potential to improve the outcomes of genetic counseling by providing tailored information and facilitating active engagement of patients in information uptake. Clinical Implication. When nurses are familiar with topics and interventions of genetic counseling, they are well positioned to provide genetic/genomic information to the patient and families.

1. Introduction

As advances in genetic science and biotechnology have led to discovery of the genes that increase the risk for certain common diseases, various genetic tests and other diagnostic tools have become available to healthcare providers including nurses. As a result, the knowledge base for genetic counseling has become important to all healthcare professionals in terms of assisting patients with accessing timely screening, adopting healthy behaviors, and making decisions about obtaining genetic testing or aggressive preventive measures such as mastectomy, oophorectomy, or chemotherapy [1]. In particular, genetic counseling impacted the entire nursing profession because nurses often need to provide genetic/genomic information to the patient and families in healthcare settings [2, 3]. Counseling for genetic risk deals with multilayered complicated information such as the risk for developing certain diseases and benefits and limitations of various options for predicting or preventing the diseases. Uncertainty is inherent in the information communicated during counseling, making it difficult for patients to fully understand the information provided and causing inconsistency in the perceived meaning of the provided information among patients [4–6]. Effective communication of the information on risk levels and potential benefits of preventive measures to individuals and their family members is one key element of realizing the benefits of genetic counseling [7–9].

Various interventions designed to facilitate the delivery of complex information to patients have been adopted in genetic counseling and these strategies and effects have been summarized in several review papers [10–12]. However, many of the reviews included a number of pilot studies whose findings were less conclusive, and the authors often described the effects of the interventions at a general “genetic counseling” level rather than relating to a specific intervention [10, 12, 13].

We conducted a literature review on the studies that investigated the effects of various interventions applied to genetic counseling. Specifically, we intended to describe (1) the specific content delivered during the risk counseling, (2) the specific methods used to communicate the content to the patients, and (3) the effectiveness of the methods on the main outcomes that the studies intended to measure.

2. Background

A primary focus of genetic counseling in the 1960s and 70s was to assist patients with reproductive decision makings by educating them about etiology and recurrence risks of certain congenital conditions [14]. Studies conducted in this period focused mostly on finding ways to increase a patients’ knowledge. However, since the 1990s, with the advances in genetic/genomic science the goals of genetic counseling are now more focused to promoting necessary changes in health behavior, adoption of timely screening for a hereditary disease, psychosocial adjustment to the stress caused by the increased risk of developing a hereditary disease, and promotion of informed decision making [15]. As such, genetic counseling is now defined as “the process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease” [16]. The central component of genetic counseling is providing information on the possibility of developing a hereditary disease and the risk management options to promote informed decision making [7, 15]. Therefore, effective delivery of the information on the genetic risk and the various risk mitigation options to the patients is the goal of genetic counseling.

Despite its importance, methods of communicating genetic risk between genetic counselors and patients are relatively understudied and underdeveloped [17]. This is partly due to the fact that the genetic risk itself is a complex concept encompassing multiple related factors. A few examples of the risk factors are various personal and epidemiological risk factors, family cancer history, the probability of having a cancer predisposing gene in the family, the probability of identifying a genetic mutation in the family and in the individual, the risk of inheriting a genetic mutation from one’s own parents, and the risk of transmitting the mutated gene to one’s own offspring. Misattributed parentage occurs around 0.9% [18]. Also most importantly, the information keeps changing. According to the Center for Disease Control and Prevention, different genes and mutations are identified on almost a daily basis (http://www.cdc.gov/genomics/update/current.htm).

In a more recent review, Meilleuer and Littleton-Kearney [10] synthesized thirteen published papers that described various methods of educating patients on multifactorial genetic risks and their effectiveness. This review describes the effectiveness of each method according to the detailed outcome categories concordant to the multilayered goals of genetic counseling that we previously described. According to this review, the use of computerized aids yielded more positive outcomes than other types of methods such as the use of video tapes and group counseling. However the generalizability of the findings seems limited as the focus of the review was narrowly defined as “multifactorial” genetic counseling and the review included relatively small number of studies (). In addition, it was not possible to discern what aspects of computerized decision aids led to the positive outcomes in this review as the interventions used in each study were described by high level categories rather than by specific functionalities of each computerized decision aid.

To address the limitations noted in the recent reviews, we conducted a literature review on the studies that reported the effectiveness of various interventions adopted in genetic counseling. We included only the experimental studies conducted as a randomized controlled trial or other types of clinical trial (i.e., pre- and postcomparison) to increase the validity of the findings.

3. Methods

3.1. Review Protocol

In order to conduct complete search and syntheses of results, we searched two biomedical journal data bases, Medline and CINAHL. Medline was searched using the MeSH term, “genetic counseling,” limiting the published date between 1999 and March of 2012; the study design was a randomized clinical trial or clinical trial and the abstract availability. We intentionally included journals published from 1999 to broaden our review. The same keyword-based search was conducted with CINAHL. The same limits on publication dates, the study design, language, and abstract availability were applied.

We retrieved 126 papers from Medline and 19 from CINAHL. Two reviewers (i.e., authors of this paper) reviewed the abstracts of the retrieved papers and obtained copies of articles if they met inclusion criteria: (1) the article was published between 1999 and 2012, (2) the design was a randomized clinical trial or clinical trial, (3) reported the effectiveness of specific educational or stress coping techniques or decision aids in genetic counseling, and (4) evaluated the effectiveness of different modes of communication (e.g., face-to-face versus telephone and individual versus group) or types of providers of genetic counseling (counselor, nurse, and physician).

Papers that do not fit the inclusion criteria by both reviewers were excluded from this review. Papers that met the inclusion criteria by only one reviewer but not the other remained in the paper pool and were determined relevancy after reading the full article. From the abstract review, we eliminated 75 papers from Medline and 10 from CINAHL. The two authors read the full text of the 60 papers. After reading the full texts, additional 17 papers and 4 redundant papers were excluded from the analysis because topics were not relevant, simulated genetic counseling, were assessing genetic risks only, or were a combination of genetic counseling and testing. Finally, a total of 39 articles were reviewed. This paper selection process was summarized in Figure 1. The details on the studies such as related study subjects, interventions, evaluation methods, findings, and any limitations posed in the studies were recorded into a table format during the review (Table 1).

Table 1: Summary of review.

Year, author, topic
Study aims
Subjects ()
Main intervention
Timeframe of the evaluation
Findings

2012,

Rothwell et al.,

(i) breast ca.,

(ii) ovarian ca.

[19].
To assess cognitive and affective outcomes with group and individual cancer genetic counseling participants on knowledge, perceived personal control, cancer specific, and genera distress

Provide group genetic counseling session
(i) A base line questionnaire,

(ii) after session questionnaire immediately after group genetic counseling
(i) Significant improvements of perceived personal control, general psychological distress and cancer-specific psychological distress scores in both individual and group genetic counseling groups,

(ii) high satisfaction scores in both individual and group genetic counseling groups

2012,

*Albada et al.,

breast ca.

[20].
To evaluate the effects of a previsit computer-tailored information and a question prompt sheet website

Provide the previsit website called E-info geneca, which is a computer-tailored information and has a question prompt sheet that helps counselees’ formulate questions to ask the counselor
(i) A base line questionnaire,

(ii) counselees’ genetic counseling sessions were videotaped
(i) Counselees in the intervention group did not ask more questions than those in usual care group,

(ii) counselors’ provide more information that is more counselees’ specific

2012,

*Albada et al.,

breast ca.

[21].
To evaluate the effects of a previsit computer-tailored information website on counselees’ expectations, knowledge of breast ca., and heredity and information needs

Usual care (UC) plus providing the previsit website called E-info geneca: a computer-tailored information website, which provides genetic counseling procedure, hereditary breast ca., surveillance, DNA-testing, the meaning of carrier of cancer gene, and emotional consequences of genetic counseling
(i) A base line questionnaire,

(ii) a questionnaire after having viewed the website
(i) Better know what to expect of their first visit in UC plus previsit website group than UC group,

(ii) less show unrealistic expectation visit in UC plus previsit website group than UC group,

(iii) increased knowledge of breast ca. and heredity in UC plus pre-visit website group than UC group,

(iv) lower information needs in UC plus previsit website group than UC group

2010,

Graves et al.,

breast ca.

[22].
To evaluate impact of a psychosocial telephone counseling

Standard genetic counseling (SGC) plus psychosocial telephone counseling (PTC)
(i) Before counseling interview,

(ii) 6-month after counseling interview,

(iii) 12-month after counseling interview
(i) PTC reduced depressive symptoms at 6 month compared to SGC,

(ii) less clinically significant anxiety found in women in SGC plus PTC group at 6 month,

(iii) no differences in anxiety and depression at 12 month

2010,

Pal et al.,

(i) breast ca.,

(ii) ovarian ca.

[23].
To evaluate the impact of telephone-based genetic counseling with culturally targeted visual aid and to evaluate factors associated with gains in knowledge

Telephone-based genetic counseling (Phone GC) with culturally targeted visual aid
(i) before counseling questionnaires,

(ii) after counseling questionnaires
(i) Phone GC improved knowledge about inherited breast and ovarian ca. in African Americana at high risk for inherited breast ca.,

(ii) participants with greater education showed significantly greater gain in knowledge,

(iii) women who had prior genetic counseling outside of this study showed significantly higher knowledge

2010,

Halbert et al.,

breast ca.

[24].
To evaluate the effects of culturally tailored genetic counseling (CTGC) over standard genetic counseling (SGC)

Culturally tailored genetic counseling
(i) Baseline interview before counseling

(ii) 1-month follow-up interview after counseling
(i) No differences in changes in risk perception in women both in CTGC and SGC groups,

(ii) improved risk perception found in women both in CTGC and SGC groups,

(iii) no changes in cancer worry in women both in CTGC and SGC groups.

2010,

Roussi et al.,

(i) breast ca.,

(ii) ovarian ca.

[25].
To evaluate an enhanced counseling intervention which is designed to help women anticipate and take inventory of their potential thoughts and feelings about possible outcomes after testing

Enhanced counseling “cognitive-affective processing” procedure for women
(i) Before counseling assessment performed in a session 1 week after self-initiated telephone contact,

(ii) after counseling assessment 1 week after intervention,

(iii) follow-up counseling 1 week after test results informed.
(i) Improved knowledge about hereditary of breast and ovarian cancer found in women who received enhanced counseling,

(ii) low anxiety found in women who tested positive and received enhanced counseling,

(iii) no significant effect of knowledge and anxiety found 1 week after test results disclosed in women in both groups

2011,

Castellani et al.,

cystic fibrosis

[26].
To assess the effectiveness of using an interactive computer program on education of cystic fibrosis.

Education by the interactive computer program
Baseline questionnaire at

(i) before counseling,

(ii) directly after counseling

program evaluation questionnaire after the counseling session
(i) No participants changed their intention to undergo testing after education by genetic counselor or interactive computer program,

(ii) overall improved knowledge found both in classical genetic counseling and in education by the interactive computer program

2009,

Roshanai et al.,

(i) breast ca.,

(ii) ovarian ca.,

(iii) colorectal ca.

[27].
To assess the effects of extended cancer genetic information on

(i) overall knowledge,

(ii) risk perception,

(iii) information sharing with family,

(iv) satisfaction with the counseling service

(i) Learning the breaking bad news methods,

(ii) written information materials on genetic risks,

(iii) video tape of the session
Face-to-face interview at

(i) before counseling,

(ii) directly after counseling,

(iii) 2 weeks after counseling;

phone interview at

(iv) 8 months after counseling
(i) Overall no major intervention effect,

(ii) accuracy of the personal risk estimation remained improved regardless of the intervention till 2 weeks after counseling,

(iii) overall high rate of informing relatives on the risk,

(iv) higher satisfaction on how to inform relatives among intervention group

2009,

Schwartz et al.,

(i) breast ca.,

(ii) ovarian ca.

[28].
To assess the effects of the CD-ROM-based decision aid on

(i) decision conflict,

(ii) decision satisfaction,

(iii) actual uptake of risk reducing mastectomy (RRM)

Interactive CD-ROM that shows tailored information mailed to the subjects after the counseling (i.e., usual care)
Face-to-face interview at

(i) 1 month after counseling,

(ii) 6 months after counseling,

(iii) 12 months after counseling
(i) For those who undecided at randomization, the decision aid helped reach decision, reduce decision conflict, increase satisfaction with decision,

(ii) no effect on obtaining RRM,

(iii) decision aid effects persisted for the entire follow-up period

2009,

Bodurtha et al.,

breast ca.

[29].
To test the effects of providing information sheets on breast cancer health on

(i) intention to take breast cancer screening (mammography, breast self-exam, clinical breast exam),

(ii) actual uptake of breast cancer screening

Information sheets covering

(i) barriers to mammography,

(ii) breast cancer seriousness,

(iii) individual risk for breast cancer,

(iv) benefits of a yearly mammogram,

(v) recommendations for nutrition and physical activity
(i) Baseline survey by self-administered paper questionnaire,

(ii) follow-up survey by phone interview
No intervention effect on intention and actual uptake of

(i) overall mammography,

(ii) breast self-exam,

(iii) clinical breast exam

between the intervention and control groups,

(iv) women who reported breast ca. worry often

or all the time at baseline had higher rates of mammograms in the intervention group compared with controls at follow-up.

2008,

Wakefield et al.,

colorectal ca.

[30].
To assess the effects of paper-based decision aid on

(i) decision conflict,

(ii) knowledge,

(iii) informed choice,

(iv) family involvement,

(v) psychological distress,

(vi) decision regret,

(vii) decision to take genetic test

(i) 40 pages long decision aids that explain details on the colorectal cancer, genetic testing, and benefits and risks of genetic testing,

(ii) provided at the end of the first counseling session
Questionnaire survey at

(i) 1 week after counseling,

(ii) 6 months after counseling
Significant intervention effects of

(i) decreased decisional conflict,

(ii) increased knowledge,

(iii) better informed choice,

(iv) the effects observed in both follow-ups;

no effect on

(i) family involvement,

(ii) psychological distress,

(iii) decision regret,

(iv) intention to take genetic test

2008,

Wakefield et al.,

breast/ovarian ca.

[31].
To assess the effects of paper-based decision aid on

(i) decision conflict,

(ii) knowledge,

(iii) informed choice,

(iv) family involvement,

(v) psychological distress,

(vi) decision regret,

(vii) decision to take genetic test

(i) 40 pages long decision aid that explains the details on the breast/ovarian cancer, genetic testing, and benefits and risks of genetic testing,

(ii) provided in the beginning of the first counseling session
Questionnaire survey at

(i) 1 week after counseling,

(ii) 6 months after counseling
Intervention effects of

(i) higher feeling of well informed,

(ii) higher clarity of values,

(iii) higher knowledge level,

(iv) lower psychological distress level,

(v) lower decision regret at 6 months;

no effect on

(i) decisional conflict,

(ii) informed choice,

(iii) family involvement,

(iv) genetic testing uptake

2008,

Kelly et al.,

ovarian ca.

[32].
To test the effects of genetic counseling on subjective risk of

(i) ovarian cancer over time,

(ii) discrepancy between subjective and objective ovarian cancer risk

Genetic counseling that incorporates Leventhal’s common sense model-based conceptualization of subjective ovarian cancer risk
Interview at

(i) baseline,

(ii) immediately after counseling;

questionnaire survey at

(iii) 6 months after counseling
(i) Most inaccurate subjective risk in patients with breast cancer history before counseling but accuracy improved after counseling,

(ii) improved subjective perception of survival time with ovarian cancer

after counseling,

(iii) consistent underestimation in patients with positive testing results at before and after counseling,

(iv) changes of underestimation to overestimation in patients with uninformative negative results at before and after counseling

2007,

Glanz et al.,

colorectal ca.

[33].
To assess the effects of culturally sensitive tailored colorectal cancer risk counseling with follow-ups on adherence to screening guideline

(i) Individual face-to-face health counseling,

(ii) tailored print materials,

(iii) 2 follow-up calls with reinforcement, reeducation, and positive reinforcement
Face-to-face interview at

    baseline;

phone interviews at

(i) 4 months after counseling,

(ii) 12 months after counseling
Intervention effects of

(i) higher screening adherence at 4 months,

(ii) continuous increase in adherence till 12 months,

(iii) larger effects among people noncompliant at baseline

2007,

Ozanne et al.,

breast ca.

[34].
To test the effects of the decision aid on

(i) decision-making knowledge on breast cancer prevention,

(ii) satisfaction

An interactive, computer-based decision aid that covers

(i) breast ca. risk assessment,

(ii) breast ca. risk in perspective,

(iii) prevention options,

(iv) options to learn about breast ca. risk
Questionnaire survey at

(i) before counseling,

(ii) after counseling,

(iii) 6–11 months after counseling
(i) Significant intervention effects of

improved knowledge,

(ii) no significant effects of

improved satisfaction

2006,

Lobb et al.,

breast ca.

[35].
To test the effect of the illustrated and structured breast cancer risk communication aid on

(i) knowledge on breast cancer,

(ii) perceived risk,

(iii) anxiety,

(iv) counseling satisfaction,

(v) communication satisfaction

A communication aid with

(i) illustrated risk level,

(ii) risk definition,

(iii) brief lessons on cancer genetics,

(iv) risk factors,

(v) factors determining genetic testing,

(vi) things to do to minimize risk
Questionnaire survey at

(i) baseline,

(ii) 1 week after counseling
No intervention effect on

(i) knowledge (except male inheritance),

(ii) risk perception,

(iii) anxiety,

(iv) satisfaction

2006,

Bowen et al.,

breast ca.

[36].
To examine the effects of genetic counseling or psychosocial group counseling on

(i) cancer worry,

(ii) risk perception,

(iii) interests in having genetic testing

4 sessions of 2 hrs long psychosocial group counseling (5-6 people) led by general health counselor;

topics on

(i) risk assessment,

(ii) risk perception,

(iii) education on genetic risk,

(iv) stress management,

(v) problem solving,

(vi) social support;

one time 1 hr long individual genetic counseling led by genetic counselor;

topics on

(i) family background,

(ii) breast ca. risk assessment, BRCA mutation in Ashkenazi population,

(iii) nongenetic risk factors for breast cancer,

(iv) breast screening
Questionnaire survey at

(i) baseline,

(ii) 6 months after counseling
Intervention effects of

(i) reduced worry about cancer,

(ii) lowered inflated risk perception,

(iii) decreased interest in having genetic testing

(iv) increased awareness on need of privacy related to genetic testing

No difference between the two types of counseling

2006,

Charles et al.

breast ca.

[37].
To examine the effects of culturally tailored genetic counseling on

(i) satisfaction,

(ii) cancer worries

Culturally tailored genetic counseling that covers

(i) basic education on hereditary breast and ovarian cancer,

(ii) genetic testing on BRCA mutation,

(iii) cancer risk information

(iv) discussion about cultural beliefs and values
(i) Structured phone interview at baseline,

(ii) questionnaire survey immediately after counseling
Intervention effects of

(i) increased satisfaction with counseling,

(ii) decreased cancer worries

2006,

Matloff et al.,

breast ca.

[38].
To examine the effects of personalized genetic counseling including risk assessment of breast cancer on

(i) attitude toward menopausal therapy options

(ii) knowledge on cancer risk

(iii) perception of cancer risk

Two individualized counseling including personalized future risk of

(i) breast/endometrial cancer,

(ii) heart disease,

(iii) osteoporosis
Questionnaire survey at

(i) baseline,

(ii) 1 month after counseling,

(iii) 6 months after counseling
Intervention effects of

(i) higher knowledge level on menopausal treatment at both follow-up time points,

(ii) significantly improved accuracy in perceived risk level for breast cancer at both follow-up time points than at baseline (but persisted overestimation),

(iii) higher perceived effectiveness in decision making at 6 months follow-up;

no effect on

(i) decisional conflict at both follow-up time points,

(ii) accepting menopausal therapy,

(iii) accepting chemoprevention of breast cancer

2006,

Arimori,

prenatal testing

[39].
To explore the effect of the Ottawa personal decision guide on decision conflict

Explaining and guiding the women through the five steps of Ottawa personal decision guide during the prenatal counseling
Self-reporting questionnaire at

(i) immediately after the genetic counseling,

(ii) after the subject had made their decision about prenatal testing
Significant intervention effect of

lower level of decisional conflict in the intervention group

2005,

Miller et al.,

breast ca.

[40].
To examine the effects of education on

(i) knowledge on hereditary cancer,

(ii) knowledge on personal family history of cancer,

(iii) perceived risk,

(iv) knowledge on genetic testing,

(v) intention to get genetic testing

Enhanced information provision during the phone-based cancer information service;

topics on

(i) the kinds of information required to determine inherited risk,

(ii) counselee’s personal family history of cancer,

(iii) benefits and limitations of genetic testing
Phone interview at

(i) baseline,

(ii) 2 weeks after counseling,

(iii) 6 months after counseling,

(iv) 12 months after counseling
Intervention effects of

(i) reduced intention to obtain genetic testing among women at average risk,

(ii) increased intention among high-risk women at 6 months,

(iii) greater increases in knowledge and perceived risk over the 6 months among high monitors;

no significant effects on

(i) knowledge about breast cancer,

(ii) knowledge about inherit patterns of cancer risk,

(iii) process of risk assessment

2005,

Miller et al.,

breast ca.

[41].
To examine the effects of the enhanced counseling on

(i) avoidant ideation after receipt of the genetic test result,

(ii) seeking information about their risk reduction options,

(iii) taking preventive surgery

45 min long enhanced counseling added to the standard counseling that covers

(i) 3 scenarios of genetic testing results (i.e., positive, negative, uninformative),

(ii) preliving the feeling and thoughts of each scenario,

(iii) discussion on the meaning of each scenario of result,

(iv) risk reduction options for each scenario result,

(v) discussion on the impact of each result on life
Questionnaire survey at

(i) baseline,

(ii) 1 week after counseling,

(iii) 6 months after counseling
Intervention effects of

(i) less avoidant ideation at 1 week after counseling,

(ii) more uptake of preventive surgery among women with positive results at 6 months after counseling,

(iii) more information seeking on risk reduction (college educated women less opt in for preventive surgery) at 6 months after counseling

2005,

Griffith et al.,

prenatal genetic screening

[42].
To test the effects of interactive computer assisted instruction program on

(i) knowledge,

(ii) anxiety,

(iii) satisfaction,

(iv) time spent on prenatal care visit,

(v) reactions of providers

Precounseling interactive computer assisted instruction (ICAI) that covers topics on

(i) types of birth defect/disease,

(ii) risk of birth defect/disease,

(iii) testing on the birth defect/disease,

(iv) accuracy of the testing,

(v) making testing decision
Questionnaire survey at

(i) baseline,

(ii) post-ICAI,

(iii) postcounseling
Significant intervention effects of

(i) improved knowledge

(ii) high satisfaction

No intervention effect on

(i) anxiety

(ii) time spent on education

Providers response of

(i) helpful printout

(ii) right amount of information

(iii) less or same amount of education time

(iv) disruption of flow (9 out of 16)

2005,

Brain et al.,

colorectal ca.

[43].
To explore the process of extended versus shortened genetic counseling protocols and to compare their impact on

(i) psychological outcomes,

(ii) decision-making outcomes in individuals eligible for genetic testing

(i) Extended counseling (2 sessions 4 weeks apart) with educational and reflective components,

(ii) shortened counseling (1 session) with only core educational components
Questionnaire survey at

(i) baseline,

(ii) immediately after counseling and 3 months after counseling;

semistructured interviews at various time points (on average 16 months) of postcounseling
No differences in 2 methods on

(i) preferred informational counseling easiness of making decisions to take test,

(ii) no differences in psychological distress immediately after the counseling,

(iii) small improvement in knowledge in both groups,

(iv) overall highly satisfied with counseling;

positive effects of shortened counseling of

(i) less distress at 3 months after counseling,

(ii) more satisfaction with decision

2005,

Braithwaite et al.,

breast ca.

[44].
To test the impact of using a computerized genetic risk assessment tool GRACE (genetic risk assessment in clinical environment) in

(i) risk perception,

(ii) emotional reactions

Pedigree assessment using GRACE and presentation of the risk in 3 formats of

(i) numerical estimate of lifetime breast cancer risk,

(ii) visual display of cumulative breast cancer risk with a general population risk as a comparator,

(iii) qualitative descriptions
Questionnaire survey at

(i) baseline,

(ii) immediatly after counseling,

(iii) 3 months after counseling
(i) Use of GRACE improved accuracy in perceived risk in both postcounseling evaluations,

(ii) patients preferred nurse counseling than GRACE,

(iii) no intervention effect on cancer related worries,

(iv) preferred numeric form and text narration, least preferred graphic form

2005,

Green et al.,

breast ca.

[45].
To test the effectiveness of precounseling computer-based education on patient’s and counselor’s perspective on

(i) efficiency,

(ii) duration of counseling, content compared to standard counseling

Self-paced, user-driven CD-ROM-based precounseling education designed to educate women about

(i) breast cancer in general,

(ii) heredity of breast cancer,

(iii) benefits and limitations of genetic testing
Questionnaire survey at

(i) baseline,

(ii) immediately after computer education,

(iii) immediately after counseling
Intervention effects of

(i) increased effectiveness by counselors and patients,

(ii) patients perceived greater level of effectiveness than counselors,

(iii) counselors indicated that the intervention group showed better understanding of heredity of breast cancer,

(iv) shorter duration of counseling, especially, among low risk patients,

(v) content shift to specific concerns of individual than basic concept education,

2005,

Wang et al.,

breast ca.

[46].
To test the usefulness of

(i) precounseling education,

(ii) personalized/tailored genetic counseling

synergistic effects of both

on

(i) counseling duration,

(ii) worry about gene mutation,

(iii) knowledge,

(iv) genetic testing decision

(i) 15 minutes long CD-ROM-based precounseling education,

(ii) preliminary knowledge testing with feedback to counselor (areas that need more education)
(i) Baseline for worry about gene mutation,

(ii) immediately after CD-ROM education for knowledge,

(iii) during the counseling for counseling duration,

(iv) immediately after counseling for worry about gene mutation and knowledge,

(v) chart review for genetic testing uptake
(i) CD-ROM group spent less with genetic counselor,

(ii) feedback group spent more with medical oncologist,

(iii) no significant combined effect,

(iv) more improved knowledge in feedback group at immediate postcounseling,

(v) greater decrease among CD-ROM group, especially among those with low level of worries at baseline,

(vi) increased worry after counseling among control group with low level of worries at baseline,

(vii) CD-ROM group significantly less opt for genetic testing,

(viii) no feedback/combined effect on genetic testing uptake

2005,

McInerney-Leo et al.,

breast/ovarian ca.

[47].
To test the effects of problem solving training (PST) in psychological distress around genetic testing and its results

PST consists of

(i) description of different types of coping and problem solving strategies (i.e., task-focused and emotion-focused),

(ii) use of checklist to identify problem or challenge faced by the patient,

(iii) generation of solutions,

(iv) solution evaluation,

(v) identification of barriers,

(vi) decision making strategy,

(vii) solution implementation plan
(i) Questionnaire survey at baseline,

(ii) phone interview at 6–9 months after genetic testing results became available
(i) Greater reductions in depressive symptom among PST group regardless of the test,

(ii) biggest improvement in psychological well-being among those resulted as negative,

(iii) no significant change in psychological well-being among those resulted as positive or nontest takers,

(iv) testers had greater improvements than nontesters in breast cancer worries,

(v) people with cancer history had significantly greater increase in breast cancer worries

2004,

Green et al.,

breast ca.

[48].
To test the effects of interactive computer program on

(i) knowledge, risk,

(ii) perception,

(iii) decisions on genetic testing,

(iv) postintervention decisional conflict,

(v) satisfaction with the educational methods

CD-ROM-based interactive precounseling educational program that covers

(i) breast cancer in general,

(ii) heredity of breast cancer,

(iii) benefits and limitations of genetic testing
Questionnaire survey at

(i) baseline assess

(ii) immediately after precounseling education,

(iii) immediately after counseling,

(iv) 1 month after counseling,

(v) 6 months after counseling,
(i) Increased knowledge in both groups but significantly higher in intervention group, in low risk group and in low education group,

(ii) significantly lowered perceived risk among low risk control group did not lowered much among high risk group,

(iii) slightly lowered perceived risk among low risk intervention group—further lowered after counseling,

(iv) lowered intention to among low risk group, less reduction among intervention group—further reduced after counseling,

(v) lowered decision conflict in both groups,

(vi) anxiety reduced in counseling group, less reduction in computer group, further reduced after counseling,

(vii) slightly higher satisfaction among low risk counselor group,

(viii) no difference in satisfaction among high risk group,

(ix) better scored in “providing enough information for decision making” among high risk counseling group,

(x) better score in “reassurance” among low risk counseling group,

(xi) better score on “good use of time” among computer group

2004,

Emmons et al.,

colorectal ca.

[49].
To test the effect of computerized risk assessment tool on colorectal risk on the accuracy of colorectal cancer risk perception

(i) Use of the Harvard colorectal cancer risk assessment and communication tool for research (HCCRACT-R) in assessing colorectal cancer risk,

(ii) HCCRACT-R supports readjustment of risk level by patients healthy behavior (i.e., active engagement) and representation of risk level in various formats (qualitative relative risk, frequency-1 in -format of absolute risk
Interviews at

(i) before counseling

(ii) after counseling
Significant intervention effects of

(i) improved accuracy in risk perception,

(ii) higher improvement in active engagement than passive engagement group;

no intervention effect on

(i) cancer worries,

(ii) satisfaction

2004,

van Roosmalen et al.,

breast ca.

[50].
To test the impact of a decision aid and its timing on

(i) well-being (depression, anxiety, cancer distress),

(ii) making treatment decision,

(iii) evaluation of treatment,

(iv) decision outcome (preference, uncertainty),

(v) knowledge level,

(vi) subjective knowledge,

(vii) satisfaction with the information,

(viii) risk perception

Brochure and video on

(i) breast cancer screening,

(ii) prophylactic surgery;

decision aids provided

(i) before test results,

(ii) after test results (to those who did not receive DA but resulted positive)
Questionnaire survey at

(i) baseline,

(ii) 4 weeks after blood sampling (before test results),

(iii) 2 weeks after test results
No significant effect of decision aid on

(i) psychological well-being,

(ii) decision outcomes;

positive effects of decision aid on

(i) selecting preventive surgery and its valuation,

(ii) information related outcome,

(iii) satisfaction,

(iv) accurate risk level perception;

no effect of timing of decision aid on any outcome variables

2002,

Brain et al.,

breast ca.

[51].
To examine the impact of specialist genetic services on

(i) anxiety,

(ii) worry,

(iii) perceived risk,

(iv) interest in genetic testing,

(v) satisfaction

Multidisciplinary team care that includes specialist genetic risk assessment and counseling
Questionnaire survey at

(i) baseline,

(ii) immediately after counseling,

(iii) next follow-up visit
(i) No intervention effect on anxiety but decreased at follow-up visit,

(ii) no intervention effect on cancer worry but significant reduction at follow-up among low, moderate risk group,

(iii) significant improvement in perceived risk in low, moderate risk group on follow-up visit. The effect was larger among intervention group

(iv) No intervention effect on satisfaction: high risk group less satisfied than mod or low risk group

(v) No intervention effect on interest in genetic testing: decreased in all groups regardless of intervention

2002,

Bowen et al.,

breast ca.

[52].
To test the effects of breast cancer risk counseling on interest in pursuing genetic testing

Individual genetic counseling with

(i) precounseling pedigree assessment,

(ii) personal risk level,

(iii) relative risk level,

(iv) heredity of breast cancer,

(v) information about genetic testing;

group psychosocial counseling with 4–6 people on

(i) risk assessment,

(ii) risk perception,

(iii) education,

(iv) stress management,

(v) problem solving,

(vi) social support
Questionnaire survey at

(i) baseline,

(ii) 6 months after counseling
(i) Increased correct awareness of genetic testing candidacy in both counseling groups,

(ii) decreased interest in taking genetic testing in both counseling groups and control group,

(iii) increased awareness on the stigma and risk related to genetic testing in both counseling group

2001,

Hurt et al.,

breast ca.

[53].
To test the effects of accompanying psychological distress management training with risk assessment on level of distress related to breast cancer risk

Psychological distress management training accompanied with risk assessment
Questionnaire by telephone interview at

(i) baseline measure before intervention,

(ii) 1 month after intervention
Intervention effect of

(i) decreased distress,

(ii) increased knowledge,

(iii) increased satisfaction with intervention

2001,

Schwartz et al.,

breast ca.

[54].
To test the effects of genetic testing education booklet on

(i) knowledge about genetic testing,

(ii) perceived importance of the benefits and the limitations of the testing,

(iii) intention to take genetic testing

Genetic testing education (GTE) booklets with question-and-answer format and with both text and graphic presentation of information
Professional telephone interview using a computer-assisted telephone interviewing

(i) before intervention,

(ii) 1 month after intervention
Significant intervention effects of

(i) GTE (genetic testing education) improved knowledge,

(ii) improved understanding on the benefits and the limitations of genetic testing,

(iii) moderate effects on testing intentions

2001,

Green et al.,

breast ca.

[55].
To test the effects of an interactive computer education program and a certified genetic counselor led education/counseling program on

(i) knowledge about breast cancer risk and genetic testing,

(ii) intention to undergo genetic testing

An interactive computer program that provides information about

(i) breast cancer, risk,

(ii) genetic testing;

education and individualized counseling by a certified genetic counselor
Questionnaires at

(i) baseline,

(ii) before intervention,

(iii) after intervention
Significant effects of both interventions of

(i) improved knowledge,

(ii) reduced intention to take genetic testing

2001,

Green et al.,

breast ca.

[56].
To test the effects of an interactive computer education program and a certified genetic counselor led education/counseling program on

(i) satisfaction,

(ii) preference

An interactive computer program that provides information about

(i) breast cancer, risk,

(ii) genetic testing;

education and individualized counseling by a certified genetic counselor
A self-administered questionnaire at

(i) baseline measure,

(ii) after measure only
Preferred the genetic counselor for

(i) the personal nature of interaction,

(ii) empathy,

(iii) provision of immediate answers to questions,

(iv) thoroughness,

(v) knowledge of the counselor,

(vi) provision of patient specific information.

Preferred computer program for

(i) user control,

(ii) ease of use,

(iii) efficient,

(iv) informative,

(v) aesthetics of the program,

(vi) privacy.

1999,

Drake et al.,pPrenatal testing

[57].
To test the effect of decision aids on

(i) knowledge about prenatal testing,

(ii) decisional conflict,

(iii) anxiety levels when considering prenatal testing,

(iv) anxiety trait level

Use of self-paced decision aid that consisted of a workbook, an audiotape, and a worksheet before prenatal counseling
Questionnaire survey

(i) before decision aid use,

(ii) after decision aid use
Significant intervention effects of

(i) higher knowledge,

(ii) decreased decision conflict,

(iii) women had statistically lower trait anxiety levels

An article was retracted. (http://breast-cancer-research.com/content/14/2/R37).

Figure 1: Paper selection process.

4. Results

Majority of the studies (35 of 39) described the interventions related to genetic counseling on breast, ovarian, or colorectal cancers [19–25, 27–38, 40, 41, 43–56]. This is not surprising given that genetic associations were established mostly for these three types of cancers. Only one study dealt with cystic fibrosis [26] and three studies dealt with prenatal counseling [39, 42, 57]. Thirty-one of the thirty-nine studies were randomized controlled trials. The remaining eight studies evaluated the intervention effects by measuring and comparing the outcome variables at preintervention and postintervention time points without a control group [19–23, 32, 35, 42]. Most of the interventions were employed during individual counseling sessions, but a few studies evaluated the effectiveness of community-based group counseling itself without an additional intervention [35, 36].

4.1. Information Topics Covered in the Studies

Counseling topics were similar across studies. The topics covered in the reviewed studies are (1) knowledge on the hereditary conditions (family heredity, heredity cancer, absolute and/or relative risk levels, and risk factors), (2) benefits and limitations of genetic testing, (3) benefits of screening tests, (4) prevention options such as preventive surgery and/or chemotherapy, and (5) cultural beliefs and values on genetic testing. The most frequently covered topic was the benefits and limitations of genetic testing (found in twenty one studies) [30–32, 35, 36, 39–48, 50, 52, 54–57] and the second most frequently covered topic was general knowledge of hereditary conditions (found in eighteen studies) [27, 30, 31, 34, 35, 38, 40, 42, 43, 45, 46, 48, 50, 53–57]. Cancer prevention options and screening tests were found in five studies [33, 36, 38, 40, 41] and preventive surgery such as risk reduction mastectomy was found in three studies [28, 40, 50]. Cultural beliefs and values on genetic testing were discussed in one study which tested culturally tailored genetic counseling as an intervention [37].

4.2. Main Interventions Evaluated

We grouped the key interventions evaluated in the reviewed studies into three general categories: (1) various types of decision aids (paper based or nonpaper based), (2) specific techniques related to stress coping and decision making, and (3) other types of interventions that fall in neither category such as culturally tailored counseling.

4.2.1. Decision Aids

Eight studies (8 out of 31) have tested the effectiveness of decision aids in genetic counseling. Ten studies evaluated paper-based decision aids, which are in the forms of booklets, paper handouts (with or without illustrations), flip charts, or brochure [27, 29–31, 33, 35, 38, 44, 54, 57]. Paper-based decision aids were usually used during the counseling and also sent with the patients after the counseling as a future reference. Nonpaper-based decision aids were evaluated in ten other studies [28, 34, 42, 45, 46, 48–50, 55, 56]. In these studies, the nonpaper-based decision aids were implemented as CD-ROM, audio/video tapes, or computer programs. Some of these decision aides were interactive and provided tailored information according to the specific information needs of a patient. CD-ROMs and audio/video tapes were distributed either before or after the counseling, while computer programs were used immediately before the counseling (i.e., during the waiting time) or during the counseling.

4.2.2. Specific Techniques for Stress Coping and Decision Making

Six studies have evaluated the effectiveness of the techniques employed to improve psychocognitive well-being when dealing with stress related to positive genetic test results or positive family history of hereditary cancer or to facilitate decision making on uptake of a test or an aggressive preventive measure. The techniques employed in these studies are follow-up reinforcement, psychosocial group counseling, prelive of stressful situation, use of a decision guide tool, and problem-solving training [36, 39, 40, 43, 47, 53].

4.2.3. Other Interventions

Five studies evaluated various other approaches to genetic counseling such as providing culturally or personally tailored information to individual patients and multidisciplinary team counseling [32, 37, 40, 51, 52].

4.3. Evaluation Methods

The most frequently used evaluation method () was the self-reported questionnaire. The next most frequently used evaluation method was interview (), either face-to-face or over the phone. Four studies used both interview and survey for evaluation. Chart review was used in two studies as a way to check the office visit appointment made for genetic testing after counseling.

Fifteen studies evaluated the outcomes at multiple time points. Twenty-five studies evaluated the intervention effects comparing the postintervention assessments to the baseline assessments [29, 32–38, 40–48, 50–57]. Eleven studies evaluated outcomes immediately after providing interventions [27, 32, 39, 42–46, 48, 51, 57], but five studies did so 1 or 2 week(s) after the interventions [30, 31, 35, 40, 41]. Long term effects were evaluated in many studies but adopted time lapses varied from 1 month to 12 months. Overall, there was no notable pattern of changes in outcomes by the follow-up time points.

The interventions designed for improving psychological well-being related to genetic testing were evaluated specifically around the related events. For example, the level of worry and anxiety related to genetic test results were assessed before and after receiving the test results [32, 40, 47] and the decision conflict on uptake of genetic testing was assessed after making the decision [31, 43, 45, 48, 51].

5. Discussion

Genetic counseling is an important clinical practice since it assists patients in choosing preventive screening test, adopting healthy behaviors, and making decisions about having genetic tests and preventive measures. Communicating accurate genetic risk levels effectively is the core process of genetic counseling. However, due to the complicated nature of the genetic risk, conducting such communication is challenging in clinical settings.

The studies that we reviewed were less diverse in terms of the target diseases and the population thus may not represent the genetic counseling domain in general. The majority (28 of 39, 71%) of the studies dealt with breast/ovarian or colorectal cancer and only four studies targeted congenital conditions. The subjects described in reviewed studies were mostly well educated Caucasians with moderate to high income, raising the need for including more diverse subject groups such as racial/ethnic minority groups, those with low income, and/or low educational backgrounds into similar studies. These various societal/economic factors may affect comprehension of the risk information provided, as well as decisions on adopting preventive measures.

Among the various information topics covered by the studies, detailed knowledge on hereditary disease was the most frequently appearing topic. However, despite their importance, topics of various preventive options, screening test, therapy options, and cultural beliefs/values were less frequently found in the studies. Considering that people responded more proactively to the risks that they can mitigate [58–60], specific risk mitigation options should be the topic regularly covered during the counseling.

Nineteen of thirty-one (61%) studies compared the effectiveness of a specific counseling method or aid to the traditional genetic counseling alone. Outcome variables were common across studies, mostly looking into cognitive (risk perception and knowledge), psychological well-being (decision conflict, cancer worries, depression, and distress), attitude or behavior change (intention to and/or actual uptake of screening test or preventive measures), and overall satisfaction with the interventions provided. Findings also varied across studies. Similar interventions did not necessarily yield similar outcomes. As noted in previous reviews, the intervention effects were less prominent in many studies and even contradictory across certain studies. One plausible reason might be the fact that personalized risk information was not communicated routinely during counseling even if communicating risk information was the central part of intervention [12]. When an intervention is constructed in a way that personalized risk information can be delivered to the patient effectively, the intervention effects may increase consistently.

Two of thirty-one (6%) studies followed up on the actual behavior change. More studies () evaluated the intervention effects on the intention related to health behavior but only one of them followed up on the actual behavior change. Therefore, it is not clear if the intention can be a reliable proxy for behavior change. Although longer term follow-up can be a challenge, more evaluation is needed to better understand the effects of various genetic counseling interventions on the actual behavior outcome.

The studies investigated in this review show that a large amount of information is communicated with patients during limited counseling time. Also, the study findings suggest that any formats of decision aids can benefit both counselors and counselees in terms of time saving, streamlining the counseling process by providing readily available comprehensive information. Regardless of its format, however, the studies that used decision aids commonly showed increased knowledge, decreased decision conflicts, and increased satisfaction with counseling interventions. This implies that decision aids could serve as an essential tool in genetic counseling.

However, interventions () that incorporated information technologies (computer programs, CD-ROMs, and video/audio tapes) were not necessarily more effective than their controls in all outcome measures. Although computer programs or CD-ROMs are able to support the customization of information based on individual’s needs, two studies implemented the tailoring functionality in their decision aids. Studies () that utilized decision aids provide canned information to patients.

It is clear that information technologies can provide additional benefits by supporting information tailoring and allowing users to take an active role in information seeking and decision making. For example, the Harvard colorectal cancer risk assessment and communication tool for research (HCCRACT-R) by Emmons et al. (2004) was the computerized decision aid, which was notable for encouraging patients to actively engage in decision making by showing different risk levels adjusted by different choices of preventive measure [49]. This study reported improvement in knowledge, risk perception, psychological well-being, and satisfaction with the use of this tool. However, intention or behavioral outcomes were not measured in this study.

Although intervention effect of using a computerized decision aid has not been proved widely, a computerized tool has potential to improve outcomes of genetic counseling because it provides a systematic way to customize risk and its mitigation information according to saliency of a patient. Such computerized decision aids can also present various educational topics such as risk level, disease related knowledge, family heredity, genetic testing, and screening options according to literacy of a patient, incorporating various presentation formats such as graphics and numbers.

6. Conclusion

The primary objective of this review was to describe the various methods employed to improve patient outcomes including health behaviors, psychological well-being, and enhanced decision makings by genetic counseling and their effects. The methods and outcome variables evaluated varied across studies. We found that no single method was consistently reported bringing positive outcomes, partly due to the relatively small scale of the review. Various risk communication methods should be developed and outcomes of each method are measured in randomized clinical trial studies. As more such experimental studies accumulate in this domain, a more comprehensive review needs to follow in the future.

Nonetheless the findings of this review suggest an opportunity of adopting decision aids enhanced with information technology. Enhanced (i.e., computerized) decision aids can support presenting various counseling topics in such a way that meets individual patient’s information needs. Providing information tailored to one’s need will ultimately improve outcomes of genetic counseling.

Since genetics and genomics knowledge are influenced in health care, demand for genetic counseling has increased. During genetic counseling sessions, vast amount of information is communicated between a counselor and a counselee. After or before genetic counseling, counselees and their families may feel comfortable sharing concerns and questions with nurses who are more familiar with them than other healthcare providers. Once nurses are knowledgeable in topics and interventions of genetic counseling, they are able to provide more information and further assistant (i.e., screening, referral for more assessment) for the patient and families.

Conflict of Interests

The authors declare that there is no conflict of interests regarding the publication of this paper.

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