title: Caring for adults with thalassemia in a pediatric world.
abstract: Improved technology and medical advances have increased the life span for patients with thalassemia. Therefore, serious consideration must now be given to adult issues such as fertility, employment opportunities, medical insurance, and long-term coping with chronic illness. Since thalassemia is a childhood illness, most adults are seen in pediatric hospitals-often, in centers with a specialty for thalassemia. Compared to a decade ago, many more patients in thalassemia centers are adolescents or older. Unfortunately, pediatric hospitals are not fully equipped to meet the changing and complex needs of adults. Emergency room care, hospital admissions, decentralized care, comprehensive care, and psychosocial issues are current challenges that must be addressed. In this study, six adult patients were asked to keep track of their care for one month to further examine self-care for thalassemia, a high-maintenance disease. From a qualitative perspective, the issues and challenges that adults face are examined and solutions for improved care are discussed.
authors.affiliation: Children's Hospital & Research Center, Oakland, 747 52nd Street, Oakland, CA 94609-1809, USA. LLevine@mail.cho.org
authors.forename: Laurice M
authors.initials: LM
authors.lastname: Compagno
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D001293:Attitude to Death; D019090:Case Management; D002648:Child; D002675:Child, Preschool; D005260:Female; D006301:Health Services Needs and Demand; D006776:Hospitals, Pediatric; D006801:Humans; D007223:Infant; D007348:Insurance, Health; D008297:Male; D008499:Medical Records; D010287:Parent-Child Relations; D010353:Patient Education as Topic; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D012380:Role; D012940:Social Problems; D013789:Thalassemia / Q000150:complications / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D013997:Time Factors