Development of a proxy-reported pulmonary outcome scale for preterm infants with bronchopulmonary dysplasia

We adapted Patient-Reported Outcomes Measurement Information System (PROMIS) methodology to develop the Proxy-Reported Pulmonary Outcomes Scale (PRPOS). A multidisciplinary group of registered nurses, nurse practitioners, neonatologists, developmental specialists, and feeding specialists at five academic medical centers participated in the PRPOS development, which included five phases: (1) identification of domains, items, and responses; (2) item classification and selection using a modified Delphi process; (3) focus group exploration of items and response options; (4) cognitive interviews on a preliminary scale; and (5) final revision before field testing.Each phase of the process helped us to identify, classify, review, and revise possible domains, questions, and response options. The final items for field testing include 26 questions or observations that a nurse assesses before, during, and after routine care time and feeding.We successfully created a prototype scale using modified PROMIS methodology. This process can serve as a model for the development of proxy-reported outcomes scales in other pediatric populations.Bronchopulmonary dysplasia (BPD), or chronic lung disease (CLD), is one of the most common sequelae of preterm birth [1], and its severity is an important predictor of long-term outcomes in premature infants [2]. The infants most vulnerable to BPD are those born before the 28th week of gestation (extremely low gestational age newborns, ELGANs). Compared to their peers without lung disease, ELGANs with BPD have increased mortality [2,3]. Those who survive with BPD have prolonged initial hospitalizations [4] and an increased risk of neurodevelopmental impairment such as mental retardation and cerebral palsy [5-7]. These BPD-associated morbidities lead to increased family stress, economic hardship, and increased health care costs throughout childhood [4,8,9].The most common definitions of BPD include the receipt of oxygen at 36 weeks post-menstrual age