A patient–clinician James Lind Alliance partnership to identify research priorities for hyperemesis gravidarum

Abstract

ObjectiveThere 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.MethodsFollowing 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.Results1009 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 middle-income countries noted that the priorities may be different in their settings.ConclusionsBy 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 policy-makers. 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 .…”

“…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 For such interventions to be appropriately implemented, the recurrence rate must be understood.…”

Lack of catch-up in weight gain may intermediate between pregnancies with hyperemesis gravidarum and reduced fetal growth: the Japan Environment and Children’s Study

“…The adverse effects of hyperemesis gravidarum on birth outcomes, if mediated by reduced weight gain, may be reversible by increasing weight gain later in pregnancy after nausea and vomiting have resolved. This implication is relevant to the 10 th research priority for hyperemesis gravidarum (i.e., nutritional requirements of the first, second, and third trimesters for people with hyperemesis gravidarum), which was identified by the patient–clinician James Lind Alliance partnership [ 24 ]. Understanding the nutritional status of women with hyperemesis gravidarum, as well as effective approaches to improve it, is of great importance [ 25 – 28 ].…”

Rating of four different foods in women with hyperemesis gravidarum: a randomised controlled trial

“…34 Nutrition support and nutrition requirements are top 10 HG research priority according to a recent Priority Setting Partnership workshop report with a paucity of published literature identified. 35 To our best knowledge, this was an original study, reporting on an experiment to evaluate food items in patients with HG. Previous studies on the maternal dietary intake in NVP is by food diary, 30 or questionnaire study on nausea response to food texture, type and cooking method.…”