Abstract
Conceptual frameworks bring together existing theories and models in order to identify, consolidate, and fill in gaps between theory, practice, and evidence. Given the vast number of possible outcomes that could be studied in genetic counseling, a framework for organizing outcomes and postulating relationships between communication services and genetic counseling outcomes was sought. Through an iterative approach involving literature review, thematic analysis, and consolidation, outcomes and processes were categorized to create and define components of a conceptual framework. The final product, “Framework for Outcomes of Clinical commUnication Services” (FOCUS) contains the following domains: communication strategy; communication process measures; patient care experience, patient changes, patient health; and family changes. A website was created to allow easier access and ongoing modifications to the framework. In addition, a step-by-step guide and two examples were created to show flexibility in how the framework can be used. FOCUS may help in conceptualizing, organizing and summarizing outcomes research related to risk communication and counseling in genetic service delivery as well as other healthcare settings.
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References
Accreditation Counsel for Genetic Counseling. (2015). Practice-Based Competencies for Genetic Counselors. Retrieved from http://www.gceducation.org/Documents/ACGC%20Core%20Competencies%20Brochure_15_Web.pdf. Accessed 28 Sept 2017
Agency for Healthcare Research and Quality. National Quality Measures Clearninghouse. (2017). https://www.qualitymeasures.ahrq.gov/. Accessed 6 Feb 2017.
Bernhardt, B. A., Biesecker, B. B., & Mastromarino, C. L. (2000). Goals, benefits, and outcomes of genetic counseling: Client and genetic counselor assessment. American Journal of Medical Genetics, 94(3), 189–197.
Committee on Quality of Health Care in America. (2001). Crossing the quality chasm: A new health system for the 21st century. National Academies Press. http://www.ncbi.nlm.nih.gov/pubmed/25057539.
DiClemente, R. J., Crosby, R. A., & Kegler, M. (2009). In R. J. DiClemente, R. A. Crosby, & M. Kegler (Eds.), Emerging theories in health promotion pracitce and research (2nd ed.). San Francisco: Jossey-Bass.
Donabedian, A. (1988). The quality of care - how can it be assessed? JAMA, 260(12), 1743–1748. https://doi.org/10.1001/jama.1988.03410120089033.
Epstein, R.M., Street, R.L., Jr. (2007) Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. National Cancer Institute, NIH Publication No. 07-6225. Bethesda. Retrieved from https://healthcaredelivery.cancer.gov/pcc/pcc_monograph.pdf.
George, R., Kovak, K., & Cox, S. L. (2015). Aligning policy to promote cascade genetic screening for prevention and early diagnosis of heritable diseases. Journal of Genetic Counseling, 24(3), 388–399. doi:https://doi.org/10.1007/s10897-014-9805-5.
Glanz, K., & Bishop, D. B. (2010). The role of behavioral science theory in development and implementation of public health interventions. Annual Review of Public Health, 31, 399–418. https://doi.org/10.1146/annurev.publhealth.012809.103604.
Hallowell, N., Lawton, J., & Gregory, S. (2005). Reflections on research: The Realitities of doing research in the social sciences. New York: Open University Press.
Hartmann, J. E., Veach, P. M., MacFarlane, I. M., & LeRoy, B. S. (2015). Genetic counselor perceptions of genetic counseling session goals: A validation study of the reciprocal-engagement model. Journal of Genetic Counseling, 24(2), 225–237. https://doi.org/10.1007/s10897-013-9647-6.
Hoerger, M., Epstein, R. M., Winters, P. C., Fiscella, K., Duberstein, P. R., Gramling, R., et al. (2013). Values and options in cancer care (VOICE): Study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer, 13, 188. https://doi.org/10.1186/1471-2407-13-188.
House, J. S. (1981). Work stress and social support. Boston: Addison-Wesley Pub Co..
Kenyon, C. C., Palakshappa, D., & Feudtner, C. (2015). Logic models--tools to bridge the theory-research-practice divide. JAMA Pediatrics, 169(9), 801–802. https://doi.org/10.1001/jamapediatrics.2015.1365.
Kinney, A. Y., Boonyasiriwat, W., Walters, S. T., Pappas, L. M., Stroup, A. M., Schwartz, M. D., et al. (2014). Telehealth personalized cancer risk communication to motivate colonoscopy in relatives of patients with colorectal cancer: The family CARE randomized controlled trial. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 32(7), 654–662. https://doi.org/10.1200/JCO.2013.51.6765.
Légaré, F., O’Connor, A. C., Graham, I., Saucier, D., Côté, L., Cauchon, M., & Paré, L. (2006). Supporting patients facing difficult health care decisions: Use of the Ottawa decision support framework. Canadian Family Physician Medecin de Famille Canadien, 52, 476–477 http://www.ncbi.nlm.nih.gov/pubmed/17327891.
Lerner, J. S., Li, Y., Valdesolo, P., & Kassam, K. S. (2015). Emotion and decision making. Annual Review of Psychology, 66(1), 799–823. https://doi.org/10.1146/annurev-psych-010213-115043.
Lundahl, B., Moleni, T., Burke, B. L., Butters, R., Tollefson, D., Butler, C., & Rollnick, S. (2013). Motivational interviewing in medical care settings: A systematic review and meta-analysis of randomized controlled trials. Patient Education and Counseling, 93(2), 157–168. https://doi.org/10.1016/j.pec.2013.07.012.
Makoul, G., & Clayman, M. L. (2006). An integrative model of shared decision making in medical encounters. Patient Education and Counseling, 60(3), 301–312. https://doi.org/10.1016/j.pec.2005.06.010.
McAllister, M., & Dearing, A. (2015). Patient reported outcomes and patient empowerment in clinical genetics services. Clinical Genetics, 88(2), 114–121. https://doi.org/10.1111/cge.12520.
McAllister, M., Payne, K., Nicholls, S., MacLeod, R., Donnai, D., & Davies, L. M. (2007). Improving service evaluation in clinical genetics: Identifying effects of genetic diseases on individuals and families. Journal of Genetic Counseling, 16(1), 71–83. https://doi.org/10.1007/s10897-006-9046-3.
McAllister, M., Payne, K., Macleod, R., Nicholls, S., Donnai, D., & Davies, L. (2008). Patient empowerment in clinical genetics services. Journal of Health Psychology, 13(7), 895–905. https://doi.org/10.1177/1359105308095063.
Mcallister, M., Wood, A., Dunn, G., Shiloh, S., & Todd, C. (2011). The genetic counseling outcome scale: A new patient-reported outcome measure for clinical genetics services. Clinical Genetics, 79, 413–424. https://doi.org/10.1111/j.1399-0004.2011.01636.x.
McAllister, M., Moldovan, R., Paneque, M., & Skirton, H. (2016). The need to develop an evidence base for genetic counselling in Europe. European Journal of Human Genetics: EJHG, 24(4), 504–505. https://doi.org/10.1038/ejhg.2015.134.
Meiser, B., Butow, P. N., Barratt, A. L., Schnieden, V., Gattas, M., Kirk, J., & Psychological Impact Collaborative Group. (2001). Long-term outcomes of genetic counseling in women at increased risk of developing hereditary breast cancer. Patient Education and Counseling, 44(3), 215–225.
Meiser, B., Irle, J., Lobb, E., & Barlow-Stewart, K. (2008). Assessment of the content and process of genetic counseling: A critical review of empirical studies. Journal of Genetic Counseling, 17(5), 434–451. https://doi.org/10.1007/s10897-008-9173-0.
Miller, W. R., & Rollnick, S. (2013). Motivational interviewing: Helping people change (3rd ed.). New York: The Guilford Press.
Nilsen, P., Eccles, M., Grimshaw, J., Walker, A., Johnston, M., Pitts, N., et al. (2015). Making sense of implementation theories, models and frameworks. Implementation Science, 10(1), 53. https://doi.org/10.1186/s13012-015-0242-0.
Paul, J., Metcalfe, S., Stirling, L., Wilson, B., & Hodgson, J. (2015). Analyzing communication in genetic consultations--a systematic review. Patient Education and Counseling, 98(1), 15–33. https://doi.org/10.1016/j.pec.2014.09.017.
Payne, K., Nicholls, S., McAllister, M., Macleod, R., Donnai, D., & Davies, L. M. (2007a). Outcome measurement in clinical genetics services: A systematic review of validated measures. Value in Health : The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 11(3), 497–508. https://doi.org/10.1111/j.1524-4733.2007.00259.x.
Payne, K., Nicholls, S. G., McAllister, M., MacLeod, R., Ellis, I., Donnai, D., & Davies, L. M. (2007b). Outcome measures for clinical genetics services: A comparison of genetics healthcare professionals and patients’ views. Health Policy (Amsterdam, Netherlands), 84(1), 112–122. https://doi.org/10.1016/j.healthpol.2007.03.005.
Pengchit, W., Walters, S. T., Simmons, R. G., Kohlmann, W., Burt, R. W., Schwartz, M. D., & Kinney, A. Y. (2011). Motivation-based intervention to promote colonoscopy screening: An integration of a fear management model and motivational interviewing. Journal of Health Psychology, 16(8), 1187–1197. https://doi.org/10.1177/1359105311402408.
Peters, K. F., & Petrill, S. A. (2011). A comparison of the background, needs, and expectations of patients seeking genetic counseling services. American Journal of Medical Genetics. Part A, 155A(4), 697–705. https://doi.org/10.1002/ajmg.a.33979.
Pithara, C. (2014). Identifying outcomes of clinical genetic services: Qualitative evidence and methodological considerations. Journal of Genetic Counseling, 23(2), 229–238. https://doi.org/10.1007/s10897-013-9654-7.
Redlinger-Grosse, K., Veach, P. M., Cohen, S., LeRoy, B. S., MacFarlane, I. M., & Zierhut, H. (2015). Defining our clinical practice: The identification of genetic counseling outcomes utilizing the reciprocal engagement model. Journal of Genetic Counseling. https://doi.org/10.1007/s10897-015-9864-2.
Roter, D., Ellington, L., Erby, L. H., Larson, S., & Dudley, W. (2006). The genetic counseling video project (GCVP): Models of practice. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 142C(4), 209–220. https://doi.org/10.1002/ajmg.c.30094.
Ruiter, R. A. C., Kessels, L. T. E., Peters, G.-J. Y., & Kok, G. (2014). Sixty years of fear appeal research: Current state of the evidence. International Journal of Psychology : Journal International de Psychologie, 49(2), 63–70. https://doi.org/10.1002/ijop.12042.
Silvey, K., Stock, J., Hasegawa, L. E., & Au, S. M. (2009). Outcomes of genetics services: Creating an inclusive definition and outcomes menu for public health and clinical genetics services. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 151C(3), 207–213. https://doi.org/10.1002/ajmg.c.30218.
Street, R. L. (2013). How clinician-patient communication contributes to health improvement: Modeling pathways from talk to outcome. Patient Education and Counseling, 92(3), 286–291. https://doi.org/10.1016/j.pec.2013.05.004.
Street, R. L., & Epstein, R. M. (2007). Patient-Centered Communication in Cancer Care: Promoting Healing & Reducing Suffering. Bethesda: NIH publication.
Street, R. L., Makoul, G., Arora, N. K., & Epstein, R. M. (2009). How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Education and Counseling, 74(3), 295–301. https://doi.org/10.1016/j.pec.2008.11.015.
Uhlmann, W. R., Schuette, J. L., & Yashar, B. M. (2009). In W. R. Uhlmann, J. L. Schuette, & B. M. Yashar (Eds.), A guide to genetic counseling (2nd ed.). Hoboken: Wiley-Blackwell.
Veach, P. M., LeRoy, B. S., & Bartels, D. M. (2003). Facilitating the genetic counseling process: A practice manual. New York: Springer-Verlag.
Veach, P. M., Bartels, D. M., & LeRoy, B. S. (2007). Coming full circle: A reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16, 713–728. https://doi.org/10.1007/s10897-007-9113-4.
Veach, P. M., LeRoy, B., & Bartels, D. M. (2010). Genetic counseling practice : Advanced concepts and skills. Hoboken: Wiley-Blackwell.
Wang, C., Gonzalez, R., & Merajver, S. D. S. D. (2004). Assessment of genetic testing and related counseling services: Current research and future directions. Social Science & Medicine, 58, 1427–1442. https://doi.org/10.1016/S0277-9536(03)00337-X.
Witte, K. (1992). Putting the fear back into fear appeals: The extended parallel process model. Communication Monographs, 59(4), 329–349. https://doi.org/10.1080/03637759209376276.
Zellerino, B. C., Milligan, S. A., Gray, J. R., Williams, M. S., & Brooks, R. (2009). Identification and prioritization of quality indicators in clinical genetics: An international survey. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 151C(3), 179–190. https://doi.org/10.1002/ajmg.c.30220.
Zierhut, H. A., Shannon, K. M., Cragun, D. L., & Cohen, S. A. (2016). Elucidating genetic counseling outcomes from the perspective of genetic counselors. Journal of Genetic Counseling, 25(5), 993–1001. https://doi.org/10.1007/s10897-015-9930-9.
Acknowledgements
Partial support for Deborah Cragun’s time was provided during her postdoctoral training fellowship funded by a NCI R25 training grant awarded to Moffitt Cancer Center (5R25CA147832-05). However, this work reflects the authors’ opinions and has neither been reviewed nor endorsed by the NCI or entities acknowledged below. The authors would like to acknowledge the National Society of Genetic Counselors outcomes work group because serving on this group revealed the need for and helped in conceptualizing this framework. Deborah Cragun would also like to acknowledge that framework development was inspired and/or influenced by: 1) training she received from her mentors (Dr. Rita DeBate and Dr. Tuya Pal); 2) discussions with Dr. Courtney Scherr and Dr. Anita Kinney; and 3) participation in the Mentored Training in Dissemination and Implementation Research in Cancer (MT-DIRC) program. MT-DIRC is supported through a NCI grant (R25CA171994-02) and by the Veterans Administration.
Dr. Christina Palmer served as Action Editor on the manuscript review process and publication decision.
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Heather Zierhut, PhD, MS and Deborah Cragun, PhD, MS declare that they have no conflict of interest.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
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No animal studies were carried out by the authors for this article.
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Cragun, D., Zierhut, H. Development of FOCUS-GC: Framework for Outcomes of Clinical Communication Services in Genetic Counseling. J Genet Counsel 27, 33–58 (2018). https://doi.org/10.1007/s10897-017-0145-0
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DOI: https://doi.org/10.1007/s10897-017-0145-0