Comfort of General Internists and General Pediatricians in Providing Care for Young Adults with Chronic Illnesses of Childhood

  • Megumi J. OkumuraEmail author
  • Michele Heisler
  • Matthew M. Davis
  • Michael D. Cabana
  • Sonya Demonner
  • Eve A. Kerr
Original Article



As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is known about how comfortable physicians are caring for this population.


To assess the comfort of general internists and general pediatricians in treating young adult patients with chronic illnesses originating in childhood as well as the factors associated with comfort.


In a random sample, 1288 of 2434 eligible US general internists and pediatricians completed a mailed survey (response rate = 53%).


We measured respondents’ comfort level in providing primary care for a patient with sickle cell disease (SCD) or cystic fibrosis (CF). We also measured levels of disease familiarity, training and subspecialty support, as well as individual physician characteristics.


Fifteen percent of general internists reported being comfortable as the primary care provider for adults with CF and 32% reported being comfortable providing primary care for adults with SCD, compared with 38% of pediatricians for CF (p < .001) and 35% for SCD (p > 0.05). Less than half of general internists felt that their specialty should take primary care responsibility for adult patients with CF and SCD.


A majority of general internists and pediatricians are not comfortable providing primary care for young adults with chronic illnesses of childhood origin, such as CF and SCD. Efforts to increase treatment comfort among providers may help with the transition to adult-focused care for the growing numbers of young adults with complex chronic conditions.


transitional care cystic fibrosis sickle cell disease young adults adolescents children with special health care needs primary care childhood diseases health care transitions 



cystic fibrosis


primary care physician


sickle cell disease



We wish to thank Dylan Smith and Norbert Schwarz for psychometric input on the survey; Samya Nasr and Andrew Campbell for disease specific input to the clinical vignette; Paula Lantz for her generous insight regarding the survey items; Camilla Payne for editing. We also received biostatistical assistance from the BREAD of the UCSF CTSI (Grant #UL1 RR024131).

Conflicts of Interest

None disclosed.


  1. 1.
    Elborn JS, Shale DJ, Britton JR. Cystic fibrosis: current survival and population estimates to the year 2000. Thorax. 1991;46(12):881–5.PubMedCrossRefGoogle Scholar
  2. 2.
    Reid GJ, Webb GD, Barzel M, McCrindle BW, Irvine MJ, Siu SC. Estimates of life expectancy by adolescents and young adults with congenital heart disease. J Am Coll Cardiol. 2006;482:349–55.PubMedCrossRefGoogle Scholar
  3. 3.
    Platt OS, Brambilla DJ, Rosse WF, et al. Mortality in sickle cell disease. Life expectancy and risk factors for early death. N Engl J Med. 1994;330(23):1639–44.PubMedCrossRefGoogle Scholar
  4. 4.
    Warnes CA, Liberthson R, Danielson GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001;375:1170–5.PubMedCrossRefGoogle Scholar
  5. 5.
    Lakdawalla DN, Bhattacharya J, Goldman DP. Are the young becoming more disabled? Health Aff (Millwood). 2004;231:168–76.CrossRefGoogle Scholar
  6. 6.
    Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic profile of children with special health care needs. Pediatrics. 1998;102(1 Pt 1):117–23.PubMedCrossRefGoogle Scholar
  7. 7.
    van der Lee J, Mokkink L, Grootenhuis M, Heymans H, Offringa M. Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA. 2007;297(24):2741–51. 1999 Oct.PubMedCrossRefGoogle Scholar
  8. 8.
    Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;147:570–6.PubMedCrossRefGoogle Scholar
  9. 9.
    American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304–6.Google Scholar
  10. 10.
    Reschovsky J, Reed M, Blumenthal D, Landon B. Physicians’ assessments of their ability to provide high-quality care in a changing health care system. Med Care. 2001;39(3):254–69.PubMedCrossRefGoogle Scholar
  11. 11.
    Foster GD, Wadden TA, Makris AP, et al. Primary care physicians’ attitudes about obesity and its treatment. Obes Res. 2003;11(10):1168–77.PubMedCrossRefGoogle Scholar
  12. 12.
    Blum R. Physicians’ assessment of deficiencies and desire for training in adolescent care. J Med Educ. 1987;62(5):401–7.PubMedGoogle Scholar
  13. 13.
    Zimmerman DL, Selick A, Singh R, Mendelssohn DC. Attitudes of Canadian nephrologists, family physicians and patients with kidney failure toward primary care delivery for chronic dialysis patients. Nephrol Dial Transplant. 2003;18(2):305–9.PubMedCrossRefGoogle Scholar
  14. 14.
    Schidlow DV, Fiel SB. Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am. 1990;74(5):1113–20.PubMedGoogle Scholar
  15. 15.
    Stille CJ, Jerant A, Bell D, Meltzer D, Elmore JG. Coordinating care across diseases, settings, and clinicians: a key role for the generalist in practice. Ann Intern Med. 2005;142(8):700–8.PubMedGoogle Scholar
  16. 16.
    Cabana MD, Rand CS, Becher OJ, Rubin HR. Reasons for pediatrician nonadherence to asthma guidelines. Arch Pediatr Adolesc Med. 2001;155(9):1057–62.PubMedGoogle Scholar
  17. 17.
    Miller AR, Johnston C, Klassen AF, Fine S, Papsdorf M. Family physicians’ involvement and self-reported comfort and skill in care of children with behavioral and emotional problems: a population-based survey. BMC Fam Pract. 2005;6:(1)12.PubMedCrossRefGoogle Scholar
  18. 18.
    Forrest CB, Nutting PA, von Schrader S, Rohde C, Starfield B. Primary care physician specialty referral decision making: patient, physician, and health care system determinants. Med Decis Making. 2006;26(1):76–85.PubMedCrossRefGoogle Scholar
  19. 19.
    Williams JW, Rost K, Dietrich AJ, Ciotti MC, Zyzanski SJ, Cornell J. Primary care physicians’ approach to depressive disorders. Effects of physician specialty and practice structure. Arch Fam Med. 1999;8(1):58–67.PubMedCrossRefGoogle Scholar
  20. 20.
    Scal P. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics. 2002;110(6 Pt 2):1315–21.PubMedGoogle Scholar
  21. 21.
    Geenen SJ, Powers LE, Sells W. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J Adolesc Health. 2003;32(3):225–33.PubMedCrossRefGoogle Scholar
  22. 22.
    Donaldson MS, Yordy KD, Lohr KN, Vanselow NA. Primary Care: America’s Health in a New Era. Washington, D.C.: National Academy Press; 1996.Google Scholar
  23. 23.
    Frankel L. The report of the CASRO task force on response rates. In: Wiseman F, eds. The Report of the CASRO Task Force on Response Rates. Cambridge, MA: Marketing Science Institute; 1983.Google Scholar
  24. 24.
    Moore JL, McAuley JW, Mott D, Reeves AL, Bussa B. Referral characteristics of primary care physicians for seizure patients. Epilepsia. 2000;41(6):744–8.PubMedCrossRefGoogle Scholar
  25. 25.
    Shah P, Norlin C, Logsdon V, Samson-Fang L. Gynecological care for adolescents with disability: physician comfort, perceived barriers, and potential solutions. J Pediatr Adolesc Gynecol. 2005;18(2):101–4.PubMedCrossRefGoogle Scholar
  26. 26.
    Cummings SM, Savitz LA, Konrad TR. Reported response rates to mailed physician questionnaires. Health Serv Res. 2001;35(6):1347–55.PubMedGoogle Scholar
  27. 27.
    Carroll G, Massarelli E, Opzoomer A, et al. Adolescents with chronic disease. Are they receiving comprehensive health care? J Adolesc Health Care. 1983;4(4):261–5.PubMedCrossRefGoogle Scholar
  28. 28.
    Harrold LR, Field TS, Gurwitz JH. Knowledge, patterns of care, and outcomes of care for generalists and specialists. J Gen Intern Med. 1999;14(8):499–511.PubMedCrossRefGoogle Scholar
  29. 29.
    Donohoe MT. Comparing generalist and specialty care: discrepancies, deficiencies, and excesses. Arch Intern Med. 1998;158(15):1596–608.PubMedCrossRefGoogle Scholar

Copyright information

© Society of General Internal Medicine 2008

Authors and Affiliations

  • Megumi J. Okumura
    • 1
    • 7
    Email author
  • Michele Heisler
    • 2
    • 4
  • Matthew M. Davis
    • 2
    • 3
    • 5
  • Michael D. Cabana
    • 1
    • 6
    • 7
  • Sonya Demonner
    • 4
  • Eve A. Kerr
    • 2
    • 4
  1. 1.Division of General PediatricsUniversity of California, San FranciscoSan FranciscoUSA
  2. 2.Division of General MedicineUniversity of Michigan Health SystemAnn ArborUSA
  3. 3.Child Health Evaluation and Research Unit, Division of General PediatricsUniversity of Michigan Health SystemAnn ArborUSA
  4. 4.Center for Clinical Management ResearchVA Ann Arbor Healthcare SystemAnn ArborUSA
  5. 5.Gerald R. Ford School of Public PolicyUniversity of MichiganAnn ArborUSA
  6. 6.Department of Epidemiology and BiostatisticsUniversity of California, San FranciscoSan FranciscoUSA
  7. 7.Institute for Health Policy StudiesUniversity of California, San FranciscoSan FranciscoUSA

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