Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care

Abstract

The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children's hospital. Thirty-two patients >/=16 years old diagnosed with CF were recruited from a pediatric tertiary care setting. During face-to-face interviews, patients were asked 27 structured questions and completed a 30-item self-administered questionnaire on preventive counseling by healthcare providers and on transition issues. The median age of patients was 25.5 years (range, 16-43 years); 69% of patients identified a pulmonologist as their "main doctor," even though 78% had a primary care provider. Participants felt that 13-16 years of age was the best time for them to begin spending time alone with their main doctor. Less than half of the participants recalled receiving preventive counseling during the previous 12 months, and more patients wanted to discuss issues than actually did. Qualitative data emphasized the importance of independence in making decisions in healthcare and establishing relationships with providers, and many patients did not desire to transfer care to an adult hospital. Participants identified adult-focused services such as inpatient rooms, discussion groups, work options, and social service support that would enhance care. In conclusion, the majority of adolescent/young adult patients with CF receiving care in a pediatric institution reported satisfaction with their healthcare. However, patients identified preventive issues that they desired to be more regularly addressed, starting in early adolescence, and changes in the delivery of services to enhance transition to adult-oriented care. This study underscored the understanding of the integration of transition planning into the facilitation of healthcare decision-making by the adolescent in issues of self-care, sexuality, education, and finances. Future initiatives to enhance the care of patients with CF should provide training of pulmonologists in preventive care and increased attention to helping patients utilize appropriate primary-care services during the adult years. In addition, prospective studies are needed to compare outcomes of CF patients who have transitioned and transferred to adult hospitals and those transitioning to adult-oriented services in a pediatric institution.

Patients' Perspective on Factors That Facilitate Transition From Child-centered to Adult-centered Health Care: A Theory Integrated Metasummary of Quantitative and Qualitative Studies

“…Across several studies, patients described CCC as a familiar and comfortable environment, and reported attachment and feelings of trust toward their health care providers [21][22][23][24][25][26][27][28][29][30][31][32]. Recent findings suggest that the main barrier patients faced after transition was to "detach themselves" from the pediatric team [33].…”

Adults With Chronic Health Conditions Originating in Childhood: Inpatient Experience in Children's Hospitals

“…Care for young adults with CF is an example of a situation in which adult and pediatric providers work together to successfully transfer care provided in children's hospitals to adult care settings. 4,23,29 Young adults with CHD, on the other hand, have high health care utilization, which increases with age. 38 However, CHD is much more heterogeneous, and encompasses Ͼ100 separate conditions that require specialized medical, surgical, and imaging equipment and personnel.…”

“…Determination of the best location for the care of adults with chronic conditions that originate in childhood is a topic that is addressed in a growing body of literature 4,[16][17][18]23,29,37 but remains unclear. A key question is the role of children's hospitals and whether they provide care for children only or for all patients with childhood diseases.…”

“…Survival well into the middle decades of life is now common for many diseases that were historically fatal in childhood. [1][2][3][4] However, these successes create new challenges for the patients, their families, and the health care system. [5][6][7] Every year at least 500 000 to 750 000 young people with special health care issues become adults.…”

“…Pediatric providers may be ill equipped to treat the adult medical needs of these patients, whereas providers and hospitals that specialize in care of adult patients may have insufficient expertise to manage the adult manifestations of conditions that originate in childhood. 5 Although patients' needs within specific disease categories have been characterized, 4, few investigators have looked at this patient population in aggregate, and the utilization of inpatient treatment facilities by these patients has been poorly described. [31][32][33][34] As efforts to reform health care intensify, an assessment of hospital care for adults with chronic conditions originating in childhood is needed to facilitate the optimal allocation of resources to meet the needs of this population.…”