A Patient-Clinician James Lind Alliance Partnership to Identify Research Priorities for Hyperemesis Gravidarum

Abstract

Objective There are many uncertainties surrounding the aetiology, treatment and sequelae of hyperemesis gravidarum (HG). Prioritising research questions could reduce research waste, helping researchers and funders direct attention to those questions which most urgently need addressing. The HG priority setting partnership (PSP) was established to identify and rank the top 25 priority research questions important to both patients and clinicians. Methods Following the James Lind Alliance (JLA) methodology, an HG PSP steering group was established. Stakeholders representing patients, carers and multidisciplinary professionals completed an online survey to gather uncertainties. Eligible uncertainties related to HG. Uncertainties on nausea and vomiting of pregnancy and those on complementary treatments were not eligible. Questions were verified against the evidence. Two rounds of prioritisation included an online ranking survey and a 1-hour consensus workshop. Results 1009 participants (938 patients/carers, 118 professionals with overlap between categories) submitted 2899 questions. Questions originated from participants in 26 different countries, and people from 32 countries took part in the first prioritisation stage. 66 unique questions emerged, which were evidence checked according to the agreed protocol. 65 true uncertainties were narrowed via an online ranking survey to 26 unranked uncertainties. The consensus workshop was attended by 19 international patients and clinicians who reached consensus on the top 10 questions for international researchers to address. More patients than professionals took part in the surveys but were equally distributed during the consensus workshop. Participants from low-income and middleincome countries noted that the priorities may be different in their settings. Conclusions By following the JLA method, a prioritised list of uncertainties relevant to both HG patients and their clinicians has been identified which can inform the international HG research agenda, funders and policymakers. While it is possible to conduct an international PSP, results from developed countries may not be as relevant in low-income and middle-income countries.

Recurrence, postponing pregnancy, and termination rates after hyperemesis gravidarum: Follow up of the MOTHER study

“…Such a wide risk prediction bracket for a condition with substantial biopsychosocial impacts makes informed decision‐making regarding subsequent pregnancies difficult. Patients have expressed a desire for research to provide a definitive recurrence risk and recently this was also recognized as a priority research question by a priority‐setting partnership 6,7 . Furthermore, there is evidence suggesting that early treatment and lifestyle preparation strategies may reduce the overall severity of the condition 8,9 .…”

Hyperemesis gravidarum severity, enteral tube feeding and cardiometabolic markers in offspring cord blood

“…With this study we are addressing two of the top 10 priority HG research questions that were recently identified by patients and clinicians, indicating the urgency of the need for guidance in the consequences of nutritional deficiency among women with HG. (30) This study can help meet patients' need for information on the long term consequences of undernutrition associated with HG for their offspring -a source of significant maternal distress. (31) Despite the small sample size, sensitivity analysis did not show any differences between MOTHER participants with and without cord blood samples available.…”

Hyperemesis gravidarum and vitamin K deficiency: a systematic review

“…Vitamin K was included in parenteral nutrition which was started at 15 weeks gestation. The median gestational age when vitamin K supplementation was commenced was 14 weeks (interquartile range 12-16) compared with the median gestational age of 19 weeks (interquartile range [16][17][18][19][20][21][22][23][24][25][26] when fetal anomalies were detected on perinatal ultrasound (Table 5).…”

“…The fact that HG has a profound impact on nutritional intake, sometimes necessitating enteral or parenteral nutrition, has raised concerns about the possibility that vitamin K deficiency can also occur in pregnancies complicated by HG (1,17,18) . Recently, the identification of the immediate and long-term effects of HG for pregnant women and their offspring were selected as urgent research questions by patients and health care professionals, which triggered the current work (19) . In this systematic review, we aimed to summarise the available literature on HG-related maternal and neonatal vitamin K deficiency and determine the relevance of measuring vitamin K-related coagulopathy factors or prothrombin time (PT) in routine work-up for women with HG.…”