Quality of life of patients and caregivers affected by bronchopulmonary dysplasia: a systematic review

Qual Life Res. 2023 Jul;32(7):1859-1869. doi: 10.1007/s11136-022-03311-y. Epub 2022 Dec 9.

Abstract

Purpose: To synthesize evidence on the impact of bronchopulmonary dysplasia (BPD) on the Quality of Life (QoL) of affected individuals from three perspectives: (i) QoL of caregiver; (ii) caregiver's perception of BPD patient's QoL; and (iii) BPD patient's self-reported QoL.

Methods: Quantitative studies (case-control, cohort, and case series) on the QoL of BPD patients or their caregivers were considered. We conducted a systematic literature search of 6 databases (PubMed, Embase, World of Science, CINAHL, PsycINFO, and Chinese National Knowledge Infrastructure) for relevant studies. All databases were searched from the date of inception of the databases to 31 March 2022. Populations of interest were caregivers with preterm babies with BPD, or children/adults who were born premature and diagnosed with BPD. The main outcome measures were total and subdomain QoL scores, and factors affecting QoL.

Results: A total of 1078 articles were found; 10 were eligible for analysis, which included 247 caregivers and 1632 patients with BPD. The QoL of patients differed by domains-some were poorer or similar, but none of the QoL domains was better than QoL of healthy controls. Poor sleep and acute care needs of BPD patients negatively affected caregiver's QoL, while increasing illness acuity negatively affected the QoL of BPD patients. The QoL of BPD patients and their caregivers was most adversely affected during the immediate post-discharge period and tended to improve with time. The physical QoL of BPD patients was similar to that of preterm babies without BPD when assessed during late childhood and early adulthood.

Conclusion: QoL assessment should be performed as an outcome measure and incorporated in the care plan for BPD patients and their caregivers. Systematic Review Registration PROSPERO CRD42021292253.

Keywords: Bronchopulmonary dysplasia; Caregivers; Chronic lung disease; Health-related quality of life; Quality of life.

Publication types

  • Systematic Review
  • Review

MeSH terms

  • Adult
  • Aftercare
  • Bronchopulmonary Dysplasia*
  • Caregivers
  • Child
  • Humans
  • Infant
  • Infant, Newborn
  • Patient Discharge
  • Quality of Life / psychology