TY - JOUR
T1 - A patient-clinician James Lind Alliance partnership to identify research priorities for hyperemesis gravidarum
AU - Dean, Caitlin R.
AU - Bierma, Hyke
AU - Clarke, Ria
AU - Cleary, Brian
AU - Ellis, Patricia
AU - Gadsby, Roger
AU - Gauw, Norah
AU - Lodge, Karen
AU - MacGibbon, Kimber
AU - McBride, Marian
AU - Munro, Deirdre
AU - Nelson-Piercy, Catherine
AU - O'Hara, Margaret
AU - Penny, Helen
AU - Shorter, Katherine
AU - Spijker, René
AU - Trovik, Jone
AU - Watford, Emma
AU - Painter, Rebecca C.
N1 - Funding Information: Funding Funding was received from Pregnancy Sickness Support for the James Lind Alliance facilitator. The final workshop was funded by the Bikkja Trust who also provided some bursaries for attendance at the workshop. Publisher Copyright: ©
PY - 2021/1/15
Y1 - 2021/1/15
N2 - 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 middle-income 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 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.
AB - 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 middle-income 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 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.
KW - health services administration & management
KW - maternal medicine
KW - obstetrics
KW - statistics & research methods
UR - http://www.scopus.com/inward/record.url?scp=85099595368&partnerID=8YFLogxK
U2 - https://doi.org/10.1136/bmjopen-2020-041254
DO - https://doi.org/10.1136/bmjopen-2020-041254
M3 - Article
C2 - 33452191
SN - 2044-6055
VL - 11
JO - BMJ Open
JF - BMJ Open
IS - 1
M1 - 041218
ER -