Case scenarios and decisional factors
Baseline, hypothetical case scenarios were created, describing a female
patient with cystic fibrosis (CF) and end-stage lung disease, facing the
decision of whether or not to pursue long transplantation. The patient
had a Forced Expiratory Volume in the first second (FEV1) of 20 percent
predicted, a rapid decline in lung function, and numerous
hospitalizations in the preceding year. She had respiratory
insufficiency necessitating nocturnal bi-level positive airway pressure
(BiPAP) and daytime supplemental oxygen. The patient was developmentally
age appropriate. Her disease progression necessitated a decision
regarding whether or not to proceed with lung transplantation. The
physician in the scenario had been the patient’s primary pulmonologist
since infancy, and shared a close relationship with the patient and
family.
Four case scenarios were generated by dichotomous systematic
manipulation of two factors: patient age and maturity level. These
decision factors were chosen given evidence that they are important in
pediatric decision-making competency.9-11 They were
presented at two levels. The patient’s age was either a pre-adolescent
of 11 years old, or an adolescent of 16 years old. Maturity level was
represented by whether or not the child performed the majority of her
self-cares and asked thoughtful questions regarding her disease. These
surrogate measures for maturity level were chosen based on CF R.I.S.E
(Responsibility.Independence.Self-care.Education), a toolset widely
utilized in assessing developing care independence in patients with
CF.15,16 All content other than age and maturity was
identical across the four scenarios. The four clinical scenarios were
presented in randomized order. An example case scenario is as follows:
Anna is an 11-year-old female with
end-stage cystic fibrosis, FEV1 of 20% predicted. She has had numerous
hospital admissions over the last year and a rapid decline in her lung
function. She is on nocturnal BiPAP and daytime supplemental oxygen.
Given her disease progression, it is time to decide whether to proceed
with lung transplantation.Anna is responsible for the majority of her self
cares and she asks thoughtful questions of her parents and providers
regarding her disease. She is developmentally age appropriate. You have been Anna’s primary pulmonologist since infancy. You have
a close relationship with her and her family. Anna and her parents have
already met with the transplant team, and she is likely a candidate.
They are deciding whether to proceed with listing for lung
transplantation.