Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA
Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
BMJ Open Respir Res. 2024 Aug 28;11(1):e002383. doi: 10.1136/bmjresp-2024-002383.
People with cystic fibrosis (CF) are living longer and healthier lives with a growing number considering and pursuing parenthood. The decision of whether to become a parent is complex for people with CF, and CF is a major factor in reproductive decision-making. Unfortunately, in people with CF who become parents, there are no prospective studies of disease trajectory, no data on the impact of parenthood on mental health, disease self-management, or quality of life, and no research regarding non-genetic parenthood.
Health Outcomes of Parents with CF (HOPeCF) is a prospective, multicentre observational cohort study which will enrol 146 new parents with CF of children less than 5 years of age. The primary aim of this 60-month study is to assess the rate of lung function decline as impacted by mental health, parental stress and responsibility, and the use of CF transmembrane conductance regulator modulators. In addition, we will conduct dyadic interviews with a subset of study participants and their key supports (partner/family/friend) to inform future interventions.
This longitudinal, observational multicentre study is a necessary and timely step in understanding parental health outcomes in CF and will provide data essential for care guidance to people with CF, their partners, and healthcare providers. The University of Pittsburgh Institutional Review Board approved this study (STUDY23080161). As people with a variety of paediatric-onset chronic diseases are living longer and considering parenthood, these results may have widespread applicability and will be distributed at international meetings and submitted to peer-reviewed journals.
囊性纤维化（CF）患者的寿命和生活质量不断提高，越来越多的人开始考虑并追求为人父母。对于 CF 患者来说，是否要成为父母是一个复杂的决定，CF 是生殖决策的一个主要因素。不幸的是，在成为父母的 CF 患者中，没有前瞻性研究疾病轨迹，也没有关于生育对心理健康、疾病自我管理或生活质量的影响的数据，以及关于非遗传父母身份的研究。
囊性纤维化患者父母的健康结果（HOPeCF）是一项前瞻性、多中心观察队列研究，将招募 146 名年龄小于 5 岁的 CF 儿童的新父母。这项为期 60 个月的研究的主要目的是评估心理健康、父母压力和责任感以及 CF 跨膜电导调节剂调节剂的使用对肺功能下降的影响。此外，我们将对研究参与者及其主要支持者（伴侣/家庭/朋友）进行一组对子访谈，为未来的干预措施提供信息。
这项纵向、观察性的多中心研究是了解 CF 中父母健康结果的必要且及时的步骤，将为 CF 患者、其伴侣和医疗保健提供者提供必要的数据指导。匹兹堡大学机构审查委员会批准了这项研究（STUDY23080161）。随着各种儿科起病的慢性疾病患者寿命延长并考虑为人父母，这些结果可能具有广泛的适用性，并将在国际会议上发表，并提交给同行评议的期刊。
