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Shared Decision-Making Among Caregivers and Health Care Providers of Youth with Type 1 Diabetes

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Abstract

The present study aimed to examine perceptions of shared decision-making (SDM) in caregivers of youth with type 1 diabetes (T1D). Interview, survey data, and HbA1c assays were gathered from caregivers of 439 youth with T1D aged 3–18 years. Caregiver-report indicated high perceived SDM during medical visits. Multivariable linear regression indicated that greater SDM is associated with lower HbA1c, older child age, and having a pediatric endocrinologist provider. Multiple logistic regression found that caregivers who did not perceive having made any healthcare decisions in the past year were more likely to identify a non-pediatric endocrinologist provider and to report less optimal diabetes self-care. Findings suggest that youth whose caregivers report greater SDM may show benefits in terms of self-care and glycemic control. Future research should examine the role of youth in SDM and how best to identify youth and families with low SDM in order to improve care.

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References

  • Agency for Healthcare Research and Quality. (1998). CAHPS(tm) 2.0 Questionnaires. Retrieved from https://cahps.ahrq.gov/.

  • American Diabetes Association. (2013). Standards of medical care in diabetes—2013. Diabetes Care, 36(Suppl 1), S11–S66. doi:10.2337/dc13-S011.

  • Applegate, H., Webb, P. M., Elkin, T. D., Neul, S. K. T., Drabman, R. S., Moll, G. W., … Megason, G. (2003). Improving parent participation at pediatric diabetes and sickle cell appointments using a brief intervention. Children’s Health Care, 32(2), 125–136. doi:10.1207/S15326888CHC3202_4.

  • Beresford, B. A., & Sloper, P. (2003). Chronically ill adolescents’ experiences of communicating with doctors: A qualitative study. Journal of Adolescent Health, 33(3), 172–179. doi:10.1016/S1054-139X(03)00047-8.

    Article  PubMed  Google Scholar 

  • Beverly, E. A., Ganda, O. P., Ritholz, M. D., Lee, Y., Brooks, K. M., Lewis-Schroeder, N. F., … Weinger, K. (2012). Look Who’s (Not) Talking Diabetic patients’ willingness to discuss self-care with physicians. Diabetes Care, 35(7), 1466–1472. doi:10.2337/dc11-2422.

  • Bieber, C., Müller, K. G., Nicolai, J., Hartmann, M., & Eich, W. (2010). How does your doctor talk with you? Preliminary validation of a brief patient self-report questionnaire on the quality of physician–patient interaction. Journal of Clinical Psychology in Medical Settings, 17(2), 125–136. doi:10.1007/s10880-010-9189-0.

    Article  PubMed  Google Scholar 

  • Bradley, C., Plowright, R., Stewart, J., Valentine, J., & Witthaus, E. (2007). The diabetes treatment satisfaction questionnaire change version (DTSQc) evaluated in insulin glargine trials shows greater responsiveness to improvements than the original DTSQ. Health and Quality of Life Outcomes, 5, 57.

    Article  PubMed Central  PubMed  Google Scholar 

  • Brinkman, W. B., Hartl, J., Rawe, L. M., Sucharew, H., Britto, M. T., & Epstein, J. N. (2011). Physicians’ shared decision-making behaviors in attention-deficit/hyperactivity disorder care. Archives of Pediatrics and Adolescent Medicine, 165(11), 1013–1019. doi:10.1001/archpediatrics.2011.154.

    Article  PubMed Central  PubMed  Google Scholar 

  • Charles, C., Gafni, A., & Whelan, T. (1999). Decision-making in the physician–patient encounter: Revisiting the shared treatment decision-making model. Social Science & Medicine, 49(5), 651–661.

    Article  CAS  Google Scholar 

  • Dabelea, D., Bell, R. A., D’Agostino, R. B., Jr., Imperatore, G., Johansen, J. M., Linder, B., … Waitzfelder, B. (2007). Incidence of diabetes in youth in the United States. JAMA: The Journal of the American Medical Association, 297(24), 2716–2724. doi:10.1001/jama.297.24.2716.

  • Elwyn, G., Edwards, A., Wensing, M., Hood, K., Atwell, C., & Grol, R. (2003). Shared decision making: developing the OPTION scale for measuring patient involvement. Quality and Safety in Health Care, 12(2), 93–99. doi:10.1136/qhc.12.2.93.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  • Fiks, A. G., Localio, A. R., Alessandrini, E. A., Asch, D. A., & Guevara, J. P. (2010). Shared decision-making in pediatrics: A national perspective. Pediatrics, 126(2), 306–314. doi:10.1542/peds.2010-0526.

    Article  PubMed Central  PubMed  Google Scholar 

  • Fiks, A. G., Mayne, S., Localio, A. R., Alessandrini, E. A., & Guevara, J. P. (2012). Shared decision-making and health care expenditures among children with special health care needs. Pediatrics, 129(1), 99–107. doi:10.1542/peds.2011-1352.

    Article  PubMed Central  PubMed  Google Scholar 

  • Gagnon, E. M., & Recklitis, C. J. (2003). Parents’ decision-making preferences in pediatric oncology: the relationship to health care involvement and complementary therapy use. Psycho-Oncology, 12(5), 442–452. doi:10.1002/pon.655.

    Article  PubMed  Google Scholar 

  • Golin, C., DiMatteo, M. R., Duan, N., Leake, B., & Gelberg, L. (2002). Impoverished diabetic patients whose doctors facilitate their participation in medical decision making are more satisfied with their care. Journal of General Internal Medicine, 17(11), 866–875. doi:10.1046/j.1525-1497.2002.20120.x.

    Article  PubMed Central  Google Scholar 

  • Harris, M. A., Wysocki, T., Sadler, M., Wilkinson, K., Harvey, L. M., Buckloh, L. M., … White, N. H. (2000). Validation of a structured interview for the assessment of diabetes self-management. Diabetes Care, 23(9), 1301–1304.

  • Heisler, M., Cole, I., Weir, D., Kerr, E. A., & Hayward, R. A. (2007). Does physician communication influence older patients’ diabetes self-management and glycemic control? Results from the Health and Retirement Study (HRS). The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 62(12), 1435–1442.

    Article  PubMed  Google Scholar 

  • Helgeson, V. S., Reynolds, K. A., Siminerio, L., Escobar, O., & Becker, D. (2008). Parent and adolescent distribution of responsibility for diabetes self-care: links to health outcomes. Journal of Pediatric Psychology, 33(5), 497–508. doi:10.1093/jpepsy/jsm081.

    Article  PubMed Central  PubMed  Google Scholar 

  • Ho, M., Marger, M., Beart, J., Yip, I., & Shekelle, P. (1997). Is the quality of diabetes care better in a diabetes clinic or in a general medicine clinic? Diabetes Care, 20(4), 472–475. doi:10.2337/diacare.20.4.472.

    Article  CAS  PubMed  Google Scholar 

  • Ingram, D. D., Parker, J. D., Schenker, N., Weed, J. A., Hamilton, B., Arias, E., et al. (2003). United States census 2000 population with bridged race categories. Vital and Health Statistics II, 135, 1–55.

    Google Scholar 

  • Institute of Medicine (IOM). (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. Retrieved from http://www.nap.edu/openbook.php?isbn=0309072808.

  • Institute of Medicine (IOM), Committee on Comparative Effectiveness Research Prioritization. (2009). Initial National Priorities for Comparative Effectiveness Research. Washington, DC: National Academy Press.

  • Klostermann, B. K., Slap, G. B., Nebrig, D. M., Tivorsak, T. L., & Britto, M. T. (2005). Earning trust and losing it: adolescents’ views on trusting physicians. The Journal of Family Practice, 54(8), 679–687.

    PubMed  Google Scholar 

  • Levetown, M. (2008). Communicating with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics, 121(5), e1441–e1460. doi:10.1542/peds.2008-0565.

    Article  PubMed  Google Scholar 

  • Maddigan, S. L., Majumdar, S. R., & Johnson, J. A. (2005). Understanding the complex associations between patient–provider relationships, self-care behaviours, and health-related quality of life in type 2 diabetes: A structural equation modeling approach. Quality of Life Research, 14(6), 1489–1500. doi:10.1007/s11136-005-0586-z.

    Article  PubMed  Google Scholar 

  • Makoul, G., & Clayman, M. L. (2006). An integrative model of shared decision making in medical encounters. Patient Education and Counseling, 60(3), 301–312. doi:10.1016/j.pec.2005.06.010.

    Article  PubMed  Google Scholar 

  • Merenstein, D., Diener-West, M., Krist, A., Pinneger, M., & Cooper, L. A. (2005). An assessment of the shared-decision model in parents of children with acute otitis media. Pediatrics, 116(6), 1267–1275. doi:10.1542/peds.2005-0486.

    Article  PubMed  Google Scholar 

  • Miller, V. A., & Harris, D. (2011). Measuring children’s decision-making involvement regarding chronic illness management. Journal of Pediatric Psychology,. doi:10.1093/jpepsy/jsr097.

    Google Scholar 

  • Montori, V. M., Gafni, A., & Charles, C. (2006). A shared treatment decision-making approach between patients with chronic conditions and their clinicians: the case of diabetes. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy, 9(1), 25–36. doi:10.1111/j.1369-7625.2006.00359.x.

    Article  Google Scholar 

  • Mullan, R. J., Montori, V. M., Shah, N. D., Christianson, T. J. H., Bryant, S. C., Guyatt, G. H., … Smith, S. A. (2009). The diabetes mellitus medication choice decision aid: a randomized trial. Archives of Internal Medicine, 169(17), 1560–1568. doi:10.1001/archinternmed.2009.293.

  • Peek, M., Wilson, S., Gorawara-Bhat, R., Odoms-Young, A., Quinn, M., & Chin, M. (2009). Barriers and facilitators to shared decision-making among African-Americans with diabetes. Journal of General Internal Medicine, 24(10), 1135–1139. doi:10.1007/s11606-009-1047-0.

    Article  PubMed Central  PubMed  Google Scholar 

  • Peerzada, J. M., Schollin, J., & Håkansson, S. (2006). Delivery room decision-making for extremely preterm infants in Sweden. Pediatrics, 117(6), 1988–1995. doi:10.1542/peds.2005-1885.

    Article  PubMed  Google Scholar 

  • Petitti, D. B., Klingensmith, G. J., Bell, R. A., Andrews, J. S., Dabelea, D., Imperatore, G., … Mayer-Davis, E. (2009). Glycemic Control in Youth with Diabetes: The SEARCH for Diabetes in Youth Study. The Journal of Pediatrics, 155(5), 668–672.e3. doi:10.1016/j.jpeds.2009.05.025.

  • Reiss, J. G., Gibson, R. W., & Walker, L. R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, 115(1), 112–120. doi:10.1542/peds.2004-1321.

    PubMed  Google Scholar 

  • SEARCH for Diabetes in Youth Study Group. (2004). SEARCH for diabetes in youth: a multicenter study of the prevalence, incidence and classification of diabetes mellitus in youth. Controlled Clinical Trials, 25(5), 458–471. doi:10.1016/j.cct.2004.08.002.

    Article  Google Scholar 

  • SEARCH for Diabetes in Youth Study Group. (2006). The burden of diabetes mellitus among US youth: Prevalence estimates from the SEARCH for diabetes in youth study. Pediatrics, 118(4), 1510–1518. doi:10.1542/peds.2006-0690.

    Article  Google Scholar 

  • Silverstein, J., Klingensmith, G., Copeland, K., Plotnick, L., Kaufman, F., Laffel, L., … Clark, N. (2005). Care of children and adolescents with type 1 diabetes A statement of the American Diabetes Association. Diabetes Care, 28(1), 186–212. doi:10.2337/diacare.28.1.186.

  • Skinner, E. A., Diette, G. B., Algatt-Bergstrom, P. J., Nguyen, T. T. H., Clark, R. D., Markson, L. E., et al. (2004). The asthma therapy assessment questionnaire (ATAQ) for children and adolescents. Disease Management, 7(4), 305–313. doi:10.1089/dis.2004.7.305.

    Article  PubMed  Google Scholar 

  • Sturm, L. A., Mays, R. M., & Zimet, G. D. (2005). Parental beliefs and decision making about child and adolescent immunization: from polio to sexually transmitted infections. Journal of Developmental and Behavioral Pediatrics: JDBP, 26(6), 441–452.

    Article  PubMed  Google Scholar 

  • Tates, K., & Meeuwesen, L. (2001). Doctor-parent-child communication. A (re)view of the literature. Social Science & Medicine (1982), 52(6), 839–851.

    Article  CAS  Google Scholar 

  • Valenzuela, J. M., Seid, M., Waitzfelder, B., Anderson, A. M., Beavers, D. P., Dabelea, D. M., … SEARCH for Diabetes in Youth Study Group. (2014). Prevalence of and disparities in barriers to care experienced by youth with type 1 diabetes. The Journal of Pediatrics. doi:10.1016/j.jpeds.2014.01.035.

  • Van Dam, H. A., van der Horst, F., van den Borne, B., Ryckman, R., & Crebolder, H. (2003). Provider-patient interaction in diabetes care: effects on patient self-care and outcomes. A systematic review. Patient Education and Counseling, 51(1), 17–28.

    Article  PubMed  Google Scholar 

  • Williams, G. C., Freedman, Z. R., & Deci, E. L. (1998). Supporting autonomy to motivate patients with diabetes for glucose control. Diabetes Care, 21(10), 1644–1651. doi:10.2337/diacare.21.10.1644.

    Article  CAS  PubMed  Google Scholar 

  • Wilson, S. R., Strub, P., Buist, A. S., Knowles, S. B., Lavori, P. W., Lapidus, J., et al. (2010). Shared treatment decision making improves adherence and outcomes in poorly controlled asthma. American Journal of Respiratory and Critical Care Medicine, 181(6), 566–577. doi:10.1164/rccm.200906-0907OC.

    Article  PubMed Central  PubMed  Google Scholar 

  • Wissow, L. S., Roter, D., Bauman, L. J., Crain, E., Kercsmar, C., Weiss, K., … Mohr, B. (1998). Patient-provider communication during the emergency department care of children with asthma. The National Cooperative Inner-City Asthma Study, National Institute of Allergy and Infectious Diseases, NIH, Bethesda, MD. Medical Care, 36(10), 1439–1450.

  • Worchel, F. F., Prevatt, B. C., Miner, J., Allen, M., Wagner, L., & Nation, P. (1995). Pediatrician’s communication style: Relationship to parent’s perceptions and behaviors. Journal of Pediatric Psychology, 20(5), 633–644. doi:10.1093/jpepsy/20.5.633.

    Article  CAS  PubMed  Google Scholar 

  • Zgibor, J. C., Songer, T. J., Kelsey, S. F., Drash, A. L., & Orchard, T. J. (2002). Influence of health care providers on the development of diabetes complications long-term follow-up from the pittsburgh epidemiology of diabetes complications study. Diabetes Care, 25(9), 1584–1590. doi:10.2337/diacare.25.9.1584.

    Article  PubMed  Google Scholar 

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Acknowledgments

The SEARCH for Diabetes in Youth Study is indebted to the many youth and their families, and their health care providers, whose participation made this study possible. Grant Support: SEARCH for Diabetes in Youth is funded by the Centers for Disease Control and Prevention (PA numbers 00097, DP-05-069, and DP-10-001) and supported by the National Institute of Diabetes and Digestive and Kidney Diseases. Site Contract Numbers: Kaiser Permanente Southern California (U48/CCU919219, U01 DP000246, and U18DP002714), University of Colorado Denver (U48/CCU819241-3, U01 DP000247, and U18DP000247-06A1), Kuakini Medical Center (U58CCU919256 and U01 DP000245), Children’s Hospital Medical Center (Cincinnati) (U48/CCU519239, U01 DP000248, and 1U18DP002709), University of North Carolina at Chapel Hill (U48/CCU419249, U01 DP000254, and U18DP002708), University of Washington School of Medicine (U58/CCU019235-4, U01 DP000244, and U18DP002710-01), Wake Forest University School of Medicine (U48/CCU919219, U01 DP000250, and 200-2010-35171). The authors wish to acknowledge the involvement of General Clinical Research Centers (GCRC) at the South Carolina Clinical & Translational Research (SCTR) Institute, at the Medical University of South Carolina (NIH/NCRR Grant number UL1RR029882); Seattle Children’s Hospital (NIH CTSA Grant UL1 TR00423 of the University of Washington); University of Colorado Pediatric Clinical and Translational Research Center (CTRC) (Grant Number UL1 TR000154) and the Barbara Davis Center at the University of Colorado at Denver (DERC NIH P30 DK57516); and the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8 UL1 TR000077; and the Children with Medical Handicaps program managed by the Ohio Department of Health. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention and the National Institute of Diabetes and Digestive and Kidney Diseases.

Conflict of Interest

Authors Jessica M. Valenzuela, Laura B. Smith, Jeanette M. Stafford, Ralph B. D’Agostino Jr., Jean M. Lawrence, Joyce P. Yi-Frazier, Michael Seid, and Lawrence M. Dolan declare that they have no conflict of interest

Human and Animal Rights and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committees on human experimentation (California: Kaiser Permanente Southern California; Carolinas: University of South Carolina, Medical University of South Carolina, Orangeburg Hospital System, McLeod Hospital, Palmetto Health, Spartanburg Regional Health System, Greenville Hospital System now Greenville Health System, AnMed Health, University of North Carolina at Chapel Hill; Colorado: Colorado Multiple Institutional Review Board, Navajo Nation Human Research Review Board; Hawaii: Pacific Health Research Institute, Kuakini Medical Center/Kuakini Geriatric Care, Inc., University of Hawaii, Kaiser Permanente Hawaii; Ohio: Cincinnati Children’s Hospital, Fort Hamilton Hughes Hospital, St. Luke Hospital, St. Elizabeth Medical Center, University of Cincinnati Medical Center, The Christ Hospital, The Jewish Hospital of Cincinnati, Mercy Health Partners, Middletown Regional Hospital, McCullough-Hyde Memorial Hospital, Good Samaritan Hospital, Bethesda North Hospital, Tri-Health, The Ohio Department of Health; Washington: Seattle Children’s including University of Washington approval, MultiCare Health System, Virginia Mason/Benaroya Research Institute, Swedish Medical Center, Group Health Cooperative, Western IRB) 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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Authors and Affiliations

  1. Center for Psychological Studies, Nova Southeastern University, 3301 College Ave., Fort Lauderdale, FL, 33314, USA

    Jessica M. Valenzuela

  2. Department of Pediatrics, University of South Florida Diabetes Center, Morsani College of Medicine, University of South Florida, Tampa, FL, USA

    Laura B. Smith

  3. Division of Public Health Sciences, Department of Biostatistical Sciences, Wake Forest School of Medicine, Winston-Salem, NC, USA

    Jeanette M. Stafford & Ralph B. D’Agostino Jr.

  4. Department of Research & Evaluation, Kaiser Permanente Southern California, Pasadena, CA, USA

    Jean M. Lawrence

  5. Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA

    Joyce P. Yi-Frazier

  6. Division of Pulmonary Medicine, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Michael Seid

  7. Division of Endocrinology, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Lawrence M. Dolan

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  1. Jessica M. Valenzuela
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  2. Laura B. Smith
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Correspondence to Jessica M. Valenzuela.

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Valenzuela, J.M., Smith, L.B., Stafford, J.M. et al. Shared Decision-Making Among Caregivers and Health Care Providers of Youth with Type 1 Diabetes. J Clin Psychol Med Settings 21, 234–243 (2014). https://doi.org/10.1007/s10880-014-9400-9

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