Key outcomes for reporting in studies of pregnant women with multiple long-term conditions: a qualitative study

Abstract

Background Maternal multiple long-term conditions are associated with adverse outcomes for mother and child. We conducted a qualitative study to inform a core outcome set for studies of pregnant women with multiple long-term conditions. Methods Women with two or more pre-existing long-term physical or mental health conditions, who had been pregnant in the last five years or planning a pregnancy, their partners and health care professionals were eligible. Recruitment was through social media, patients and health care professionals’ organisations and personal contacts. Participants who contacted the study team were purposively sampled for maximum variation. Three virtual focus groups were conducted from December 2021 to March 2022 in the United Kingdom: (i) health care professionals (n = 8), (ii) women with multiple long-term conditions (n = 6), and (iii) women with multiple long-term conditions (n = 6) and partners (n = 2). There was representation from women with 20 different physical health conditions and four mental health conditions; health care professionals from obstetrics, obstetric/maternal medicine, midwifery, neonatology, perinatal psychiatry, and general practice. Participants were asked what outcomes should be reported in all studies of pregnant women with multiple long-term conditions. Inductive thematic analysis was conducted. Outcomes identified in the focus groups were mapped to those identified in a systematic literature search in the core outcome set development. Results The focus groups identified 63 outcomes, including maternal (n = 43), children’s (n = 16) and health care utilisation (n = 4) outcomes. Twenty-eight outcomes were new when mapped to the systematic literature search. Outcomes considered important were generally similar across stakeholder groups. Women emphasised outcomes related to care processes, such as information sharing when transitioning between health care teams and stages of pregnancy (continuity of care). Both women and partners wanted to be involved in care decisions and to feel informed of the risks to the pregnancy and baby. Health care professionals additionally prioritised non-clinical outcomes, including quality of life and financial implications for the women; and longer-term outcomes, such as children’s developmental outcomes. Conclusions The findings will inform the design of a core outcome set. Participants’ experiences provided useful insights of how maternity care for pregnant women with multiple long-term conditions can be improved.

The development of a core outcome set for studies of pregnant women with multimorbidity

“…From the systematic literature search, 185 unique outcomes were identified. The focus groups identified 63 outcomes; when mapped to the systematic literature search, 28 outcomes were new [ 25 ]. These 213 outcomes were reviewed in workshops with the research team and patient representatives; 35 outcomes, including seven outcomes from a core outcome set for neonatal research [ 28 ], were added; 86 outcomes were dropped and 35 outcomes were combined with other outcomes, giving a total of 127 outcomes for the first Delphi (Fig.…”

“…As outcomes identified in the literature may be more representative of outcomes that are of interest to researchers rather than women or other stakeholders, we supplemented the initial list of outcomes with qualitative studies (focus groups) involving stakeholders [ 10 ]. The findings from the focus groups will be reported in more detail in a separate publication [ 25 ]. Briefly, three focus groups were conducted in the UK from December 2021 to March 2022: one for women, one for women and their partners and one for health professionals.…”