Articles
A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: A need for case management services*,**

https://doi.org/10.1053/jpdn.2002.30930Get rights and content

Abstract

Life expectancy for adolescents with SCD now extends well into adulthood. As a result, adolescents transfer to adult care. Little empirical evidence exists to show how transfer occurs and how well the current practices now work. The aim of this study was to obtain a database on the experience of adolescents/young adults with SCD that transfer to adult care. We assessed their treatment compliance, independence, and whether they receive uninterrupted care. Data were obtained through patient and provider interviews and patient record reviews. Results indicate patients leave pediatric care without adequate transfer preparation and readiness to transfer is not the major consideration in the decision to transfer, follow-up often ceases once the patients leave pediatric care, and patients who maintain follow-up appointments are more efficient in managing their illness (self-efficacy). The model for a structured transitioning process is provided with recommendations for nurse case managers to maintain follow-up. Copyright 2002, Elsevier Science (USA). All rights reserved.

Section snippets

Literature review

Adolescence is a developmental stage that begins with the onset of puberty. For females puberty usually begins between 10 and 12 years of age and for males between 12 and 14 years of age. Adolescence is psychologically characterized by the movement from a relative state of dependency to a defining growth of autonomy and is physically characterized by rapid bodily changes. Developmental tasks include establishing a sense of identity and autonomy, achieving a vocational/career goal, increasing

Methodology

To answer the research questions, a nonexperimental descriptive research design was used to collect historical and data. Historical data were obtained through record review and face-to-face contact or telephone interviews with primary providers. Descriptive and demographic data on AYAs past and present experiences were obtained through face-to-face interviews with study participants. The following five tools were used for data collection.

Demographic and Informational Inventory, a 17-item form

Results

Data include transfer information and results by research question. Data were analyzed using descriptive and frequency techniques. If there were significant correlations between critical dependent variables, (e.g., uninterrupted care, compliance, independence, self-efficacy), and independent variables, (e.g., preparation, gender, PCC) researchers computed nonparametric statistical tests. Inferences cannot be made because of the small number of participants and the presence of only one ACC site.

Discussion

The aforementioned results corroborate Hauser and Dorn's (1999) earlier work that AYAs receive little if any preparation before leaving PCC. More importantly, our current results support the following: (1) AYAs with chronic illness are transferred to ACC abruptly with little preparation or opportunity to practice managing their care; (2) follow-up care often ceases once the patient leaves PCC; (3) transfer is often initiated because of the AYAs age or pregnancy rather than readiness to

Limitations

As noted in the introduction, the goals of this study were not to offer predictions, but rather to investigate current transfer practices and to identify potential hazards in these practices. There are four major limitations with this study. First, the small sample size precludes determining if any relationships exist among variables or making generalizations to other like populations. Second, a large number of potential cases were lost to follow-up because these patients left pediatrics

Future research

Future research is needed to evaluate those persons with SCD who do not follow-through with obtaining health care beyond pediatric care. This research is crucial to pursue relevant health care policy and its economic ramifications. More specifically, further research is needed to evaluate the efficacy of the transitioning protocol suggested in this study and to develop methods to increase providers' awareness of transition needs. Ideally, results from such studies will influence health policy

Implications for nursing practice

The results of this study show that none of the sites had a transition program and despite the good intentions of the health care providers, most participants received little preparation before transfer. Findings suggest that the participants were not adequately prepared to move to adult care and that many of them ceased to follow-through with care. With this in mind, findings point to a need for reconfiguration of the pediatric and adult care nurses' role in working with AYAs with chronic

References (46)

  • L.A. Aday

    At risk in America: The health and health care needs of vulnerable populations in the United States

    (1993)
  • American Academy of Pediatrics

    Transition for adolescents with special needs: A policy statement

    Pediatrics

    (1996)
  • American Nurses Association

    A statement on psychiatric-mental nursing practice

    (1994)
  • K.L. Baker et al.
  • R.G. Barker

    Ecological psychology

    (1968)
  • C.L. Betz

    Adolescent transitions: A nursing concern

    Pediatric Nursing

    (1998)
  • C.L. Betz

    Adolescents with chronic conditions: Linkages to adult service systems

    Pediatric Nursing

    (1999)
  • R.W. Blum

    The disabled adolescent: An orientation

  • L. Breslow

    Social ecological strategies for promoting healthy lifestyles

    Journal of Health Promotion

    (1996)
  • U. Brofenbrenner

    The ecology of human development

    (1979)
  • M. Cappelli et al.

    Assessment for readiness to transfer to adult care for adolescents with cystic fibrosis

    Childrens' Health Care

    (1989)
  • O. Castro et al.

    Brighter horizons for SCD

    Patient Care

    (1994, April 30)
  • J.M. Court

    Outpatient-based transition services for youth

    Pediatrician

    (1991)
  • Cited by (0)

    *

    Supported by the Health Research and Policy Centers at the University of Illinois at Chicago, Chicago, IL.

    **

    Address reprint requests to Elizabeth A. Wojciechowski, PhD, RN CS, Clinical Education Program Manager, Rehabilitation Institute of Chicago, 345 East Superior, Rm 162, Chicago, IL 60611. E-mail: [email protected].

    View full text