Lost in Transition: Health Care Experiences of Adults Born Very Preterm—A Qualitative Approach

Abstract

Introduction: Adults Born Very Preterm (ABP) are an underperceived but steadily increasing patient population. It has been shown that they face multiple physical, mental and emotional health problems as they age. Very little is known about their specific health care needs beyond childhood and adolescence. This article focuses on their personal perspectives: it explores how they feel embedded in established health care structures and points to health care-related barriers they face.Methods: We conducted 20 individual in-depth interviews with adults born preterm aged 20–54 years with a gestational age (GA) below 33 weeks at birth and birth weights ranging from 870–1,950 g. Qualitative content analysis of the narrative interview data was conducted to identify themes related to self-perceived health, health care satisfaction, and social well-being.Results: The majority (85%) of the study participants reported that their former prematurity is still of concern in their everyday lives as adults. The prevalence of self-reported physical (65%) and mental (45%) long-term sequelae of prematurity was high. Most participants expressed dissatisfaction with health care services regarding their former prematurity. Lack of consideration for their prematurity status by adult health care providers and the invisibility of the often subtle impairments they face were named as main barriers to receiving adequate health care. Age and burden of disease were important factors influencing participants' perception of their own health and their health care satisfaction. All participants expressed great interest in the provision of specialized, custom-tailored health-care services, taking the individual history of prematurity into account.Discussion: Adults born preterm are a patient population underperceived by the health care system. Longterm effects of very preterm birth, affecting various domains of life, may become a substantial burden of disease in a subgroup of formerly preterm individuals and should therefore be taken into consideration by adult health care providers.

Health perception by young adults born very preterm

“…They reported that one of the main reasons why they were dissatisfied with their current health care provider was because they did not consider their birth history. 10 In our study, more than two-thirds (69%) of young adults born preterm who consulted a healthcare professional disclosed their birth status without being asked. This raises the question of selfadvocacy: Whether encouraging people to disclose their birth status during healthcare consultations could be part of knowledge transfer strategies for managing long-term health following preterm birth.…”

“…6,7 However, data about the perspectives of adults born preterm, regarding their health status, healthcare needs and use, are limited. [8][9][10] Such information is key to planning effective knowledge transfer strategies to increase awareness and optimal care for adults born preterm. The goal of this study was to examine how adults born very preterm perceived their health, their healthcare needs and healthcare use compared with the general population.…”

Preterm birth: Educational and mental health outcomes

“…Parent-led organisations have started advocating for greater recognition of and research into the ongoing impact of preterm birth (Marlow et al, 2020;Ogilvy et al, 2017). Adults born preterm report that health professionals beyond those involved in early-life care are often unaware of their health needs, highlighting the need for better education on preterm birth for health professionals working with adolescents and adults (Perez et al, 2020). Considerably more work is needed to identify fruitful interventions or support strategies to ensure that preterm-born children achieve their potential.…”

Advocating for lifelong follow‐up after preterm birth

“…Stories like Camille's are not uncommon. 1,2 Being born preterm Recent research demonstrates an elevated risk of chronic conditions such as hypertension, diabetes or airway obstruction 3 in young adults born preterm, which are generally asymptomatic at a young age. Children born preterm are also known to report more internalising problems such as anxiety and depression, which may result in an increased vulnerability for mental disorders in adulthood.…”

“…Stories like Camille's are not uncommon 1,2 . Being born preterm is not a condition one can cure, like other illnesses.…”