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Arch Dis Child. Oct 2004; 89(10): 943–949.
PMCID: PMC1719690

The adolescent with a chronic condition. Part II: healthcare provision

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  • Suris J-C, Michaud P-A, Viner R. The adolescent with a chronic condition. Part I: developmental issues. Arch Dis Child. 2004 Oct;89(10):938–942. [PMC free article] [PubMed]
  • Stein RE, Jessop DJ. A noncategorical approach to chronic childhood illness. Public Health Rep. 1982 Jul-Aug;97(4):354–362. [PMC free article] [PubMed]
  • Stein RE, Silver EJ. Operationalizing a conceptually based noncategorical definition: a first look at US children with chronic conditions. Arch Pediatr Adolesc Med. 1999 Jan;153(1):68–74. [PubMed]
  • Sawyer SM, Bowes G. Adolescence on the health agenda. Lancet. 1999 Sep;354 (Suppl 2):SII31–SII34. [PubMed]
  • Buhlmann U, Fitzpatrick SB. Caring for an adolescent with a chronic illness. Prim Care. 1987 Mar;14(1):57–68. [PubMed]
  • Jessop DJ, Stein RE. Providing comprehensive health care to children with chronic illness. Pediatrics. 1994 Apr;93(4):602–607. [PubMed]
  • Beresford Bryony A, Sloper Patricia. Chronically ill adolescents' experiences of communicating with doctors: a qualitative study. J Adolesc Health. 2003 Sep;33(3):172–179. [PubMed]
  • Woodgate RL. Adolescents' perspectives of chronic illness: "it's hard". J Pediatr Nurs. 1998 Aug;13(4):210–223. [PubMed]
  • Woodgate RL. Health professionals caring for chronically ill adolescents: adolescents' perspectives. J Soc Pediatr Nurs. 1998 Apr-Jun;3(2):57–68. [PubMed]
  • Tates K, Meeuwesen L, Elbers E, Bensing J. I've come for his throat': roles and identities in doctor-parent-child communication. Child Care Health Dev. 2002 Jan;28(1):109–116. [PubMed]
  • van Dulmen AM. Children's contributions to pediatric outpatient encounters. Pediatrics. 1998 Sep;102(3 Pt 1):563–568. [PubMed]
  • Sigman GS, Kraut J, La Puma J. Disclosure of a diagnosis to children and adolescents when parents object. A clinical ethics analysis. Am J Dis Child. 1993 Jul;147(7):764–768. [PubMed]
  • Leikin S. The role of adolescents in decisions concerning their cancer therapy. Cancer. 1993 May 15;71(10 Suppl):3342–3346. [PubMed]
  • Ishibashi A. The needs of children and adolescents with cancer for information and social support. Cancer Nurs. 2001 Feb;24(1):61–67. [PubMed]
  • Patterson J, Blum RW. Risk and resilience among children and youth with disabilities. Arch Pediatr Adolesc Med. 1996 Jul;150(7):692–698. [PubMed]
  • Schowalter JE, Ferholt JB, Mann NM. The adolescent patient's decision to die. Pediatrics. 1973 Jan;51(1):97–103. [PubMed]
  • Dickey Susan B, Kiefner Jeanne, Beidler Susan M. Consent and confidentiality issues among school-age children and adolescents. J Sch Nurs. 2002 Jun;18(3):179–186. [PubMed]
  • Feldman-Winter Lori, McAbee Gary N. Legal issues in caring for adolescent patients. Physicians can optimize healthcare delivery to teens. Postgrad Med. 2002 May;111(5):15–66. [PubMed]
  • Pless IB, Roghmann KJ. Chronic illness and its consequences: observations based on three epidemiologic surveys. J Pediatr. 1971 Sep;79(3):351–359. [PubMed]
  • Scarfone RJ, Zorc JJ, Capraro GA. Patient self-management of acute asthma: adherence to national guidelines a decade later. Pediatrics. 2001 Dec;108(6):1332–1338. [PubMed]
  • Michaud PA, Frappier JY, Pless IB. La compliance d'adolescents souffrant d'une maladie chronique. Arch Fr Pediatr. 1991 May;48(5):329–336. [PubMed]
  • Fotheringham MJ, Sawyer MG. Adherence to recommended medical regimens in childhood and adolescence. J Paediatr Child Health. 1995 Apr;31(2):72–78. [PubMed]
  • Fielding D, Duff A. Compliance with treatment protocols: interventions for children with chronic illness. Arch Dis Child. 1999 Feb;80(2):196–200. [PMC free article] [PubMed]
  • Rogers AS, Miller S, Murphy DA, Tanney M, Fortune T. The TREAT (Therapeutic Regimens Enhancing Adherence in Teens) program: theory and preliminary results. J Adolesc Health. 2001 Sep;29(3 Suppl):30–38. [PubMed]
  • Pless IB, Feeley N, Gottlieb L, Rowat K, Dougherty G, Willard B. A randomized trial of a nursing intervention to promote the adjustment of children with chronic physical disorders. Pediatrics. 1994 Jul;94(1):70–75. [PubMed]
  • Bosley CM, Fosbury JA, Cochrane GM. The psychological factors associated with poor compliance with treatment in asthma. Eur Respir J. 1995 Jun;8(6):899–904. [PubMed]
  • KyngAs HA, Kroll T, Duffy ME. Compliance in adolescents with chronic diseases: a review. J Adolesc Health. 2000 Jun;26(6):379–388. [PubMed]
  • Vermeire E, Hearnshaw H, Van Royen P, Denekens J. Patient adherence to treatment: three decades of research. A comprehensive review. J Clin Pharm Ther. 2001 Oct;26(5):331–342. [PubMed]
  • Roter DL, Hall JA, Merisca R, Nordstrom B, Cretin D, Svarstad B. Effectiveness of interventions to improve patient compliance: a meta-analysis. Med Care. 1998 Aug;36(8):1138–1161. [PubMed]
  • Anderson B, Ho J, Brackett J, Finkelstein D, Laffel L. Parental involvement in diabetes management tasks: relationships to blood glucose monitoring adherence and metabolic control in young adolescents with insulin-dependent diabetes mellitus. J Pediatr. 1997 Feb;130(2):257–265. [PubMed]
  • Burroughs TE, Pontious SL, Santiago JV. The relationship among six psychosocial domains, age, health care adherence, and metabolic control in adolescents with IDDM. Diabetes Educ. 1993 Sep-Oct;19(5):396–402. [PubMed]
  • La Greca AM. Peer influences in pediatric chronic illness: an update. J Pediatr Psychol. 1992 Dec;17(6):775–784. [PubMed]
  • Blum RW, Kelly A, Ireland M. Health-risk behaviors and protective factors among adolescents with mobility impairments and learning and emotional disabilities. J Adolesc Health. 2001 Jun;28(6):481–490. [PubMed]
  • Clark NM, Gong M. Management of chronic disease by practitioners and patients: are we teaching the wrong things? BMJ. 2000 Feb 26;320(7234):572–575. [PMC free article] [PubMed]
  • Clark NM, Gong M, Schork MA, Evans D, Roloff D, Hurwitz M, Maiman L, Mellins RB. Impact of education for physicians on patient outcomes. Pediatrics. 1998 May;101(5):831–836. [PubMed]
  • Guevara James P, Wolf Fredric M, Grum Cyril M, Clark Noreen M. Effects of educational interventions for self management of asthma in children and adolescents: systematic review and meta-analysis. BMJ. 2003 Jun 14;326(7402):1308–1309. [PMC free article] [PubMed]
  • Logan Deirdre, Zelikovsky Nataliya, Labay Larissa, Spergel Jonathan. The Illness Management Survey: identifying adolescents' perceptions of barriers to adherence. J Pediatr Psychol. 2003 Sep;28(6):383–392. [PubMed]
  • Patterson JM. A family systems perspective for working with youth with disability. Pediatrician. 1991;18(2):129–141. [PubMed]
  • Patterson JM. Family resilience to the challenge of a child's disability. Pediatr Ann. 1991 Sep;20(9):491–499. [PubMed]
  • Wolman C, Resnick MD, Harris LJ, Blum RW. Emotional well-being among adolescents with and without chronic conditions. J Adolesc Health. 1994 May;15(3):199–204. [PubMed]
  • Lee Martha B, Rotheram-Borus Mary Jane. Parents' disclosure of HIV to their children. AIDS. 2002 Nov 8;16(16):2201–2207. [PubMed]
  • Kurnat EL, Moore CM. The impact of a chronic condition on the families of children with asthma. Pediatr Nurs. 1999 May-Jun;25(3):288–292. [PubMed]
  • Chernoff RG, List DG, DeVet KA, Ireys HT. Maternal reports of raising children with chronic illnesses:the prevalence of positive thinking. Ambul Pediatr. 2001 Mar-Apr;1(2):104–107. [PubMed]
  • Kauffmann E, Harrison MB, Burke SO, Wong C. Stress-point intervention for parents of children hospitalized with chronic conditions. Pediatr Nurs. 1998 Jul-Aug;24(4):362–366. [PubMed]
  • Tsiantis J, Anastasopoulos D, Meyer M, Panitz D, Ladis V, Platokouki N, Aroni S, Kattamis C. A multi-level intervention approach for care of HIV-positive haemophiliac and thalassaemic patients and their families. AIDS Care. 1990;2(3):253–266. [PubMed]
  • Resnick MD, Bearman PS, Blum RW, Bauman KE, Harris KM, Jones J, Tabor J, Beuhring T, Sieving RE, Shew M, et al. Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health. JAMA. 1997 Sep 10;278(10):823–832. [PubMed]
  • Masera G, Chesler MA, Jankovic M, Ablin AR, Ben Arush MW, Breatnach F, McDowell HP, Eden T, Epelman C, Fossati Bellani F, et al. SIOP Working Committee on psychosocial issues in pediatric oncology: guidelines for communication of the diagnosis. Med Pediatr Oncol. 1997 May;28(5):382–385. [PubMed]
  • Ljungman Gustaf, McGrath Patrick J, Cooper Elisabeth, Widger Kimberley, Ceccolini Jill, Fernandez Conrad V, Frager Gerri, Wilkins Krista. Psychosocial needs of families with a child with cancer. J Pediatr Hematol Oncol. 2003 Mar;25(3):223–231. [PubMed]
  • Pyke-Grimm KA, Degner L, Small A, Mueller B. Preferences for participation in treatment decision making and information needs of parents of children with cancer: a pilot study. J Pediatr Oncol Nurs. 1999 Jan;16(1):13–24. [PubMed]
  • Nixon GM, Glazner JA, Martin JM, Sawyer SM. Female sexual health care in cystic fibrosis. Arch Dis Child. 2003 Mar;88(3):265–266. [PMC free article] [PubMed]
  • Breslau N, Weitzman M, Messenger K. Psychologic functioning of siblings of disabled children. Pediatrics. 1981 Mar;67(3):344–353. [PubMed]
  • Lavigne JV, Ryan M. Psychologic adjustment of siblings of children with chronic illness. Pediatrics. 1979 Apr;63(4):616–627. [PubMed]
  • Leonard BJ. Siblings of chronically ill children: a question of vulnerability versus resilience. Pediatr Ann. 1991 Sep;20(9):501–506. [PubMed]
  • Taylor, Fuggle P, Charman T. Well sibling psychological adjustment to chronic physical disorder in a sibling: how important is maternal awareness of their illness attitudes and perceptions? J Child Psychol Psychiatry. 2001 Oct;42(7):953–962. [PubMed]
  • LeBlanc Linda A, Goldsmith Tina, Patel Dilip R. Behavioral aspects of chronic illness in children and adolescents. Pediatr Clin North Am. 2003 Aug;50(4):859–878. [PubMed]
  • Leonard RC, Gregor A, Coleman RE, Lewis I. Strategy needed for adolescent patients with cancer. BMJ. 1995 Aug 5;311(7001):387–387. [PMC free article] [PubMed]
  • Hollis R, Morgan S. The adolescent with cancer--at the edge of no-man's land. Lancet Oncol. 2001 Jan;2(1):43–48. [PubMed]
  • Reaman GH, Bonfiglio J, Krailo M, Tebbi CK, Leikin S, Ettinger R, Zeltzer LK, Nachman JB, Rivera GK, Aboulafia A, et al. Cancer in adolescents and young adults. Cancer. 1993 May 15;71(10 Suppl):3206–3209. [PubMed]
  • Guyer MJ, Harrison SI, Rieveschl JL. Development rights to privacy and independent decision-making. J Am Acad Child Psychiatry. 1982 May;21(3):298–302. [PubMed]
  • Hutton Alison. The private adolescent: privacy needs of adolescents in hospitals. J Pediatr Nurs. 2002 Feb;17(1):67–72. [PubMed]
  • Akinbami Lara J, Gandhi Hiren, Cheng Tina L. Availability of adolescent health services and confidentiality in primary care practices. Pediatrics. 2003 Feb;111(2):394–401. [PubMed]
  • Silber Tomas J. Ethical considerations in the medical care of adolescents and their parents. Pediatr Ann. 1981 Oct;10(10):408–410. [PubMed]
  • Cavanaugh RM., Jr Obtaining a personal and confidential history from adolescents. An opportunity for prevention. J Adolesc Health Care. 1986 Mar;7(2):118–122. [PubMed]
  • Kelly A. The primary care provider's role in caring for young people with chronic illness. J Adolesc Health. 1995 Jul;17(1):32–36. [PubMed]
  • Weiland SK, Pless IB, Roghmann KJ. Chronic illness and mental health problems in pediatric practice: results from a survey of primary care providers. Pediatrics. 1992 Mar;89(3):445–449. [PubMed]
  • Aasland A, Diseth TH. Can the Harter Self-Perception Profile for Adolescents (SPPA) be used as an indicator of psychosocial outcome in adolescents with chronic physical disorders? Eur Child Adolesc Psychiatry. 1999 Jun;8(2):78–85. [PubMed]
  • Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child. 2001 Mar;84(3):205–211. [PMC free article] [PubMed]
  • DiGirolamo AM, Quittner AL, Ackerman V, Stevens J. Identification and assessment of ongoing stressors in adolescents with a chronic illness: an application of the behavior-analytic model. J Clin Child Psychol. 1997 Mar;26(1):53–66. [PubMed]
  • Hampson SE, Skinner TC, Hart J, Storey L, Gage H, Foxcroft D, Kimber A, Shaw K, Walker J. Effects of educational and psychosocial interventions for adolescents with diabetes mellitus: a systematic review. Health Technol Assess. 2001;5(10):1–79. [PubMed]
  • Walker DK, Stein RE, Perrin EC, Jessop DJ. Assessing psychosocial adjustment of children with chronic illnesses: a review of the technical properties of PARS III. J Dev Behav Pediatr. 1990 Jun;11(3):116–121. [PubMed]
  • Carroll G, Massarelli E, Opzoomer A, Pekeles G, Pedneault M, Frappier JY, Onetto N. Adolescents with chronic disease. Are they receiving comprehensive health care? J Adolesc Health Care. 1983 Dec;4(4):261–265. [PubMed]
  • Renders CM, Valk GD, Griffin SJ, Wagner EH, Eijk Van JT, Assendelft WJ. Interventions to improve the management of diabetes in primary care, outpatient, and community settings: a systematic review. Diabetes Care. 2001 Oct;24(10):1821–1833. [PubMed]
  • Choquet M, Du Pasquier Fediaevsky L, Manfredi R. Sexual behavior among adolescents reporting chronic conditions: a French national survey. J Adolesc Health. 1997 Jan;20(1):62–67. [PubMed]
  • Blum RW. Sexual health contraceptive needs of adolescents with chronic conditions. Arch Pediatr Adolesc Med. 1997 Mar;151(3):290–297. [PubMed]
  • Surís JC, Parera N, Puig C. Chronic illness and emotional distress in adolescence. J Adolesc Health. 1996 Aug;19(2):153–156. [PubMed]
  • Surís JC, Resnick MD, Cassuto N, Blum RW. Sexual behavior of adolescents with chronic disease and disability. J Adolesc Health. 1996 Aug;19(2):124–131. [PubMed]
  • Miauton Lise, Narring Françoise, Michaud Pierre-André Chronic illness, life style and emotional health in adolescence: results of a cross-sectional survey on the health of 15-20-year-olds in Switzerland. Eur J Pediatr. 2003 Oct;162(10):682–689. [PubMed]
  • Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB. 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 Nov;14(7):570–576. [PubMed]
  • Blum Robert W. Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care. Pediatrics. 2002 Dec;110(6 Pt 2):1301–1303. [PubMed]
  • Bowes G, Sinnema G, Surís JC, Bühlmann U. Transition health services for youth with disabilities: a global perspective. J Adolesc Health. 1995 Jul;17(1):23–31. [PubMed]
  • Callahan ST, Winitzer RF, Keenan P. Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Curr Opin Pediatr. 2001 Aug;13(4):310–316. [PubMed]
  • Rettig P, Athreya BH. Adolescents with chronic disease. Transition to adult health care. Arthritis Care Res. 1991 Dec;4(4):174–180. [PubMed]
  • Hallum A. Disability and the transition to adulthood: issues for the disabled child, the family, and the pediatrician. Curr Probl Pediatr. 1995 Jan;25(1):12–50. [PubMed]
  • Rosen DS. Transition to adult health care for adolescents and young adults with cancer. Cancer. 1993 May 15;71(10 Suppl):3411–3414. [PubMed]
  • Sawyer SM, Collins N, Bryan D, Brown D, Hope MA, Bowes G. Young people with spina bifida: transfer from paediatric to adult health care. J Paediatr Child Health. 1998 Oct;34(5):414–417. [PubMed]
  • Scal P, Evans T, Blozis S, Okinow N, Blum R. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health. 1999 Apr;24(4):259–264. [PubMed]
  • Telfair J, Myers J, Drezner S. Transfer as a component of the transition of adolescents with sickle cell disease to adult care: adolescent, adult, and parent perspectives. J Adolesc Health. 1994 Nov;15(7):558–565. [PubMed]
  • Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child. 1999 Sep;81(3):271–275. [PMC free article] [PubMed]
  • Conway SP. Transition from paediatric to adult-orientated care for adolescents with cystic fibrosis. Disabil Rehabil. 1998 Jun-Jul;20(6-7):209–216. [PubMed]
  • Landau LI. Cystic fibrosis: transition from paediatric to adult physician's care. Thorax. 1995 Oct;50(10):1031–1032. [PMC free article] [PubMed]
  • Geenen Sarah J, Powers Laurie E, Sells Wayne. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J Adolesc Health. 2003 Mar;32(3):225–233. [PubMed]
  • Savage MO, Besser GM. When and how to transfer patients from paediatric to adult endocrinologists: experience from St Bartholomew's Hospital, London. Acta Paediatr Suppl. 1997 Nov;423:127–128. [PubMed]
  • Nasr SZ, Campbell C, Howatt W. Transition program from pediatric to adult care for cystic fibrosis patients. J Adolesc Health. 1992 Dec;13(8):682–685. [PubMed]
  • Ewing Jane E. Are we doing enough for young people with chronic illness? Aust N Z J Public Health. 2003 Oct;27(5):560–560. [PubMed]
  • Jones R, Finlay F, Simpson N, Kreitman T. How can adolescents' health needs and concerns best be met? Br J Gen Pract. 1997 Oct;47(423):631–634. [PMC free article] [PubMed]
  • Bennett David L, Tonkin Roger S. International developments in adolescent health care: a story of advocacy and achievement. J Adolesc Health. 2003 Oct;33(4):240–251. [PubMed]
  • Prescott HM. History of adolescent medicine in the 20th century: from Hall to Elkind. Adolesc Med. 2000 Feb;11(1):1–12. [PubMed]
  • Elster A. The American Medical Association Guidelines for Adolescent Preventive Services. Arch Pediatr Adolesc Med. 1997 Sep;151(9):958–959. [PubMed]
  • White PH. Transition to adulthood. Curr Opin Rheumatol. 1999 Sep;11(5):408–411. [PubMed]

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