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1. A core outcome set for pre-eclampsia research: an international consensus development study.

Author

Ghosh S.K., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Donald F., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., EH C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley E.J., Mooij R., Moore E.L., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero A.N., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Conk A.S., Soward D., Stepan H., Stroumpoulis K., SurenDr A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., AV D.J.A., VInturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Duffy J.M.N., Cairns A.E., Richards-Doran D., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Khalil A., Lucas D.N., Magee L.A., Mol B.W., Stark M., Thangaratinam S., Wilson M.J., von Dadelszen P., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., DA C.C.D., AkaDr A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Pipkin E.F.B., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Gbinigie O.A., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., Hallman M., Ghosh S.K., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Donald F., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., EH C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley E.J., Mooij R., Moore E.L., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero A.N., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Conk A.S., Soward D., Stepan H., Stroumpoulis K., SurenDr A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., AV D.J.A., VInturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Duffy J.M.N., Cairns A.E., Richards-Doran D., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Khalil A., Lucas D.N., Magee L.A., Mol B.W., Stark M., Thangaratinam S., Wilson M.J., von Dadelszen P., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., DA C.C.D., AkaDr A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Pipkin E.F.B., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Gbinigie O.A., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., and Hallman M.

Abstract

Objective: To develop a core outcome set for pre-eclampsia. Design(s): Consensus development study. Setting(s): International. Population: Two hundred and eight-one healthcare professionals, 41 researchers and 110 patients, representing 56 countries, participated. Method(s): Modified Delphi method and Modified Nominal Group Technique. Result(s): A long-list of 116 potential core outcomes was developed by combining the outcomes reported in 79 pre-eclampsia trials with those derived from thematic analysis of 30 in-depth interviews of women with lived experience of pre-eclampsia. Forty-seven consensus outcomes were identified from the Delphi process following which 14 maternal and eight offspring core outcomes were agreed at the consensus development meeting. Maternal core outcomes: death, eclampsia, stroke, cortical blindness, retinal detachment, pulmonary oedema, acute kidney injury, liver haematoma or rupture, abruption, postpartum haemorrhage, raised liver enzymes, low platelets, admission to intensive care required, and intubation and ventilation. Offspring core outcomes: stillbirth, gestational age at delivery, birthweight, small-for-gestational-age, neonatal mortality, seizures, admission to neonatal unit required and respiratory support. Conclusion(s): The core outcome set for pre-eclampsia should underpin future randomised trials and systematic reviews. Such implementation should ensure that future research holds the necessary reach and relevance to inform clinical practice, enhance women's care and improve the outcomes of pregnant women and their babies. Tweetable abstract: 281 healthcare professionals, 41 researchers and 110 women have developed #preeclampsia core outcomes @HOPEoutcomes @jamesmnduffy. [Correction added on 29 June 2020, after first online publication: the order has been corrected.].Copyright © 2020 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd on behalf of Royal College of Obstetr

Published
2021

2. A core outcome set for pre-eclampsia research: an international consensus development study.

Author

Ghosh S.K., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Donald F., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., EH C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley E.J., Mooij R., Moore E.L., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero A.N., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Conk A.S., Soward D., Stepan H., Stroumpoulis K., SurenDr A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., AV D.J.A., VInturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Duffy J.M.N., Cairns A.E., Richards-Doran D., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Khalil A., Lucas D.N., Magee L.A., Mol B.W., Stark M., Thangaratinam S., Wilson M.J., von Dadelszen P., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., DA C.C.D., AkaDr A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Pipkin E.F.B., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Gbinigie O.A., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., Hallman M., Ghosh S.K., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Donald F., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., EH C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley E.J., Mooij R., Moore E.L., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero A.N., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Conk A.S., Soward D., Stepan H., Stroumpoulis K., SurenDr A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., AV D.J.A., VInturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Duffy J.M.N., Cairns A.E., Richards-Doran D., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Khalil A., Lucas D.N., Magee L.A., Mol B.W., Stark M., Thangaratinam S., Wilson M.J., von Dadelszen P., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., DA C.C.D., AkaDr A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Pipkin E.F.B., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Gbinigie O.A., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., and Hallman M.

Abstract

Objective: To develop a core outcome set for pre-eclampsia. Design(s): Consensus development study. Setting(s): International. Population: Two hundred and eight-one healthcare professionals, 41 researchers and 110 patients, representing 56 countries, participated. Method(s): Modified Delphi method and Modified Nominal Group Technique. Result(s): A long-list of 116 potential core outcomes was developed by combining the outcomes reported in 79 pre-eclampsia trials with those derived from thematic analysis of 30 in-depth interviews of women with lived experience of pre-eclampsia. Forty-seven consensus outcomes were identified from the Delphi process following which 14 maternal and eight offspring core outcomes were agreed at the consensus development meeting. Maternal core outcomes: death, eclampsia, stroke, cortical blindness, retinal detachment, pulmonary oedema, acute kidney injury, liver haematoma or rupture, abruption, postpartum haemorrhage, raised liver enzymes, low platelets, admission to intensive care required, and intubation and ventilation. Offspring core outcomes: stillbirth, gestational age at delivery, birthweight, small-for-gestational-age, neonatal mortality, seizures, admission to neonatal unit required and respiratory support. Conclusion(s): The core outcome set for pre-eclampsia should underpin future randomised trials and systematic reviews. Such implementation should ensure that future research holds the necessary reach and relevance to inform clinical practice, enhance women's care and improve the outcomes of pregnant women and their babies. Tweetable abstract: 281 healthcare professionals, 41 researchers and 110 women have developed #preeclampsia core outcomes @HOPEoutcomes @jamesmnduffy. [Correction added on 29 June 2020, after first online publication: the order has been corrected.].Copyright © 2020 The Authors. BJOG: An International Journal of Obstetrics and Gynaecology published by John Wiley & Sons Ltd on behalf of Royal College of Obstetr

Published
2021

3. Standardising definitions for the pre-eclampsia core outcome set: A consensus development study.

Author

Donald F., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero J.A., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Smith Conk A., Soward D., Stepan H., Stroumpoulis K., Surendran A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., Vaughan D.J.A., Vinturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Zermansky A.G., Mol B., Duffy J.M.N., Cairns A.E., Magee L.A., von Dadelszen P., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Lucas D.N., Stark M., Thangaratinam S., Wilson M.J., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., Adamson C.C.D., Akadri A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Beebeejaun Y., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Broughton Pipkin F., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Gbinigie O.A., Gerval M.-O., Ghosh S.K., Gingel L.J., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., Hallman M., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., Homer C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mills D.J., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley J., Mooij R., Moore E.L., Donald F., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero J.A., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Smith Conk A., Soward D., Stepan H., Stroumpoulis K., Surendran A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., Vaughan D.J.A., Vinturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Zermansky A.G., Mol B., Duffy J.M.N., Cairns A.E., Magee L.A., von Dadelszen P., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Lucas D.N., Stark M., Thangaratinam S., Wilson M.J., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., Adamson C.C.D., Akadri A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Beebeejaun Y., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Broughton Pipkin F., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Gbinigie O.A., Gerval M.-O., Ghosh S.K., Gingel L.J., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., Hallman M., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., Homer C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mills D.J., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley J., Mooij R., and Moore E.L.

Abstract

Objectives: To develop consensus definitions for the core outcome set for pre-eclampsia. Study design: Potential definitions for individual core outcomes were identified across four formal definition development initiatives, nine national and international guidelines, 12 Cochrane systematic reviews, and 79 randomised trials. Eighty-six definitions were entered into the consensus development meeting. Ten healthcare professionals and three researchers, including six participants who had experience of conducting research in low- and middle-income countries, participated in the consensus development process. The final core outcome set was approved by an international steering group. Result(s): Consensus definitions were developed for all core outcomes. When considering stroke, pulmonary oedema, acute kidney injury, raised liver enzymes, low platelets, birth weight, and neonatal seizures, consensus definitions were developed specifically for low- and middle-income countries because of the limited availability of diagnostic interventions including computerised tomography, chest x-ray, laboratory tests, equipment, and electroencephalogram monitoring. Conclusion(s): Consensus on measurements for the pre-eclampsia core outcome set will help to ensure consistency across future randomised trials and systematic reviews. Such standardization should make research evidence more accessible and facilitate the translation of research into clinical practice. Video abstract can be available at: www.dropbox.com/s/ftrgvrfu0u9glqd/6.%20Standardising%20definitions%20in%20teh%20pre-eclampsia%20core%20outcome%20set%3A%20a%20consensus%20development%20study.mp4?dl=0.Copyright © 2020 International Society for the Study of Hypertension in Pregnancy

Published
2020

4. Standardising definitions for the pre-eclampsia core outcome set: A consensus development study.

Author

Donald F., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero J.A., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Smith Conk A., Soward D., Stepan H., Stroumpoulis K., Surendran A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., Vaughan D.J.A., Vinturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Zermansky A.G., Mol B., Duffy J.M.N., Cairns A.E., Magee L.A., von Dadelszen P., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Lucas D.N., Stark M., Thangaratinam S., Wilson M.J., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., Adamson C.C.D., Akadri A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Beebeejaun Y., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Broughton Pipkin F., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Gbinigie O.A., Gerval M.-O., Ghosh S.K., Gingel L.J., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., Hallman M., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., Homer C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mills D.J., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley J., Mooij R., Moore E.L., Donald F., Morgan L., Moulson A., Mughal F., Mundle S.R., Munoz M.A., Murray E., Nagata C., Nair A.S., Nakimuli A., Nath G., Newport R.S., Oakeshott P., Ochoa-Ferraro M.R., Odendaal H., Ohkuchi A., Oliveira L., Ortiz-Panozo E., Oudijk M.A., Oygucu S.E., Paech M.J., Painter R.C., Parry C.L., Payne B.A., Pearson E.L., Phupong V., Pickett N., Pickles K.A., Plumb L.K., Prefumo F., Preston R., Ray J.G., Rayment J., Regan L.V., Rey E., Robson E.J., Rubin A.N., Rubio-Romero J.A., Rull K., Sass N., Sauve N., Savory N.A., Scott J.R., Seaton S.E., Seed P.T., Shakespeare J.M., Shand A.W., Sharma S., Shaw T.Y., Smedley K.L., Smith D., Smith Conk A., Soward D., Stepan H., Stroumpoulis K., Surendran A., Takeda S., Tan L., Theriot B.S., Thomas H.F., Thompson K., Thompson P.I., Thompson M.J., Toms L., Torney K.L.H.T., Treadwell J.S., Tucker K.L., Turrentine M.A., Van Hecke O., Van Oostwaard M.F., Vasquez D.N., Vaughan D.J.A., Vinturache A., Walker J., Wardle S.P., Wasim T., Waters J.H., Whitehead C.L., Wolfson A., Yeo S., Zermansky A.G., Mol B., Duffy J.M.N., Cairns A.E., Magee L.A., von Dadelszen P., van 't Hooft J., Gale C., Brown M., Chappell L.C., Grobman W.A., Fitzpatrick R., Karumanchi S.A., Lucas D.N., Stark M., Thangaratinam S., Wilson M.J., Williamson P.R., Ziebland S., McManus R.J., Abalos E.J., Adamson C.C.D., Akadri A.A., Akturk Z., Allegaert K., Angel-Muller E., Antretter J., Ashdown H.F., Audibert F., Auger N., Aygun C., Babic I., Bagga R., Baker J.M., Beebeejaun Y., Bhakta P., Bhandari V., Bhattacharya S., Blanker M.H., Bloomfield F.H., Bof A., Brennan S.M., Broekhuijsen K., Broughton Pipkin F., Browne J.L., Browning R.M., Bull J.W., Butt A., Button D., Campbell J.P., Campbell D.M., Carbillon L., Carthy S., Casely E., Cave J.A., Cecatti J.G., Chamillard M.E., Chassard D., Checheir N.C., Chulkov V.S., Cluver C.A., Crawford C.F., Daly M.C., Darmochwal-Kolarz D.A., Davies R.E., Davies M.W., Dawson J.S., Dobson N., Dodd C.N., Duley L., Epstein-Mares J., Erez O., Evans E., Farlie R.N., Ferris A.V., Frankland E.M., Freeman D.J., Gainder S., Ganzevoort W., Gbinigie O.A., Gerval M.-O., Ghosh S.K., Gingel L.J., Glogowska M., Goodlife A., Gough K.L., Green J.R., Gul F., Haggerty L., Hall D.R., Hallman M., Hamilton L.M., Hammond S.J., Harlow S.D., Hays K.E., Hickey S.C., Higgins M., Hinton L., Hobson S.R., Hogg M.J., Hollands H.J., Homer C.S.E., Hoodbhoy Z., Howell P., Huppertz B., Husain S., Jacoby S.D., Jacqz-Aigrain E., Jenkins G., Jewel D., Johnson M.J., Johnston C.L., Jones P.M., Kantrowitz-Gordon I., Khan R.-U., Kirby L.J., Kirk C., Knight M., Korey M.T., Lee G.J., Lee V.W., Levene L.S., Londero A.P., Lust K.M., MacKenzie V., Malha L., Mattone M., McCartney D.E., McFadden A., McKinstry B.H., Middleton P.F., Mills D.J., Mistry H.D., Mitchell C.A., Mockler J.C., Molsher S.-A., Monast E.S., Moodley J., Mooij R., and Moore E.L.

Abstract

Objectives: To develop consensus definitions for the core outcome set for pre-eclampsia. Study design: Potential definitions for individual core outcomes were identified across four formal definition development initiatives, nine national and international guidelines, 12 Cochrane systematic reviews, and 79 randomised trials. Eighty-six definitions were entered into the consensus development meeting. Ten healthcare professionals and three researchers, including six participants who had experience of conducting research in low- and middle-income countries, participated in the consensus development process. The final core outcome set was approved by an international steering group. Result(s): Consensus definitions were developed for all core outcomes. When considering stroke, pulmonary oedema, acute kidney injury, raised liver enzymes, low platelets, birth weight, and neonatal seizures, consensus definitions were developed specifically for low- and middle-income countries because of the limited availability of diagnostic interventions including computerised tomography, chest x-ray, laboratory tests, equipment, and electroencephalogram monitoring. Conclusion(s): Consensus on measurements for the pre-eclampsia core outcome set will help to ensure consistency across future randomised trials and systematic reviews. Such standardization should make research evidence more accessible and facilitate the translation of research into clinical practice. Video abstract can be available at: www.dropbox.com/s/ftrgvrfu0u9glqd/6.%20Standardising%20definitions%20in%20teh%20pre-eclampsia%20core%20outcome%20set%3A%20a%20consensus%20development%20study.mp4?dl=0.Copyright © 2020 International Society for the Study of Hypertension in Pregnancy

Published
2020

5. A core outcome set for pre-eclampsia research:an international consensus development study

Author

Duffy, J. M.N., Cairns, A. E., Richards-Doran, D., van 't Hooft, J., Gale, C., Brown, M., Chappell, L. C., Grobman, W. A., Fitzpatrick, R., Karumanchi, S. A., Khalil, A., Lucas, D. N., Magee, L. A., Mol, B. W., Stark, M., Thangaratinam, S., Wilson, M. J., von Dadelszen, P., Williamson, P. R., Ziebland, S., McManus, R. J., Abalos, Edgardo J., DA, Christine C.D., AkaDr, Adebayo A., Akturk, Zekeriya, Allegaert, Karel, Angel-Müller, Edith, Antretter, Jessica, Ashdown, Helen F., Audibert, Francois, Auger, Nathalie, Aygun, Canan, Babic, Inas, Bagga, Rashmi, Baker, Judith M., Bhakta, Pradipta, Bhandari, Vineet, Bhattacharya, Sohinee, Blanker, Marco H., Bloomfield, Frank H., Bof, Anna, Brennan, Siobhan M., Broekhuijsen, Kim, Pipkin, Emeritus Fiona Broughton, Browne, Joyce L., Browning, Roger M., Bull, Jameson W., Butt, Amina, Button, Dena, Van Oostwaard, Miriam F., Duffy, J. M.N., Cairns, A. E., Richards-Doran, D., van 't Hooft, J., Gale, C., Brown, M., Chappell, L. C., Grobman, W. A., Fitzpatrick, R., Karumanchi, S. A., Khalil, A., Lucas, D. N., Magee, L. A., Mol, B. W., Stark, M., Thangaratinam, S., Wilson, M. J., von Dadelszen, P., Williamson, P. R., Ziebland, S., McManus, R. J., Abalos, Edgardo J., DA, Christine C.D., AkaDr, Adebayo A., Akturk, Zekeriya, Allegaert, Karel, Angel-Müller, Edith, Antretter, Jessica, Ashdown, Helen F., Audibert, Francois, Auger, Nathalie, Aygun, Canan, Babic, Inas, Bagga, Rashmi, Baker, Judith M., Bhakta, Pradipta, Bhandari, Vineet, Bhattacharya, Sohinee, Blanker, Marco H., Bloomfield, Frank H., Bof, Anna, Brennan, Siobhan M., Broekhuijsen, Kim, Pipkin, Emeritus Fiona Broughton, Browne, Joyce L., Browning, Roger M., Bull, Jameson W., Butt, Amina, Button, Dena, and Van Oostwaard, Miriam F.

Abstract

Objective: To develop a core outcome set for pre-eclampsia. Design: Consensus development study. Setting: International. Population: Two hundred and eight-one healthcare professionals, 41 researchers and 110 patients, representing 56 countries, participated. Methods: Modified Delphi method and Modified Nominal Group Technique. Results: A long-list of 116 potential core outcomes was developed by combining the outcomes reported in 79 pre-eclampsia trials with those derived from thematic analysis of 30 in-depth interviews of women with lived experience of pre-eclampsia. Forty-seven consensus outcomes were identified from the Delphi process following which 14 maternal and eight offspring core outcomes were agreed at the consensus development meeting. Maternal core outcomes: death, eclampsia, stroke, cortical blindness, retinal detachment, pulmonary oedema, acute kidney injury, liver haematoma or rupture, abruption, postpartum haemorrhage, raised liver enzymes, low platelets, admission to intensive care required, and intubation and ventilation. Offspring core outcomes: stillbirth, gestational age at delivery, birthweight, small-for-gestational-age, neonatal mortality, seizures, admission to neonatal unit required and respiratory support. Conclusions: The core outcome set for pre-eclampsia should underpin future randomised trials and systematic reviews. Such implementation should ensure that future research holds the necessary reach and relevance to inform clinical practice, enhance women's care and improve the outcomes of pregnant women and their babies. Tweetable abstract: 281 healthcare professionals, 41 researchers and 110 women have developed #preeclampsia core outcomes @HOPEoutcomes @jamesmnduffy. [Correction added on 29 June 2020, after first online publication: the order has been corrected.].

Published
2020

6. Standardising definitions for the pre-eclampsia core outcome set: A consensus development study.

Author

Duffy, JMN, Cairns, AE, Magee, LA, von Dadelszen, P, van 't Hooft, J, Gale, C, Brown, M, Chappell, LC, Grobman, WA, Fitzpatrick, R, Karumanchi, SA, Lucas, DN, Mol, B, Stark, M, Thangaratinam, S, Wilson, MJ, Williamson, PR, Ziebland, S, McManus, RJ, International Collaboration to Harmonise Outcomes for Pre-eclampsia (iHOPE), Duffy, JMN, Cairns, AE, Magee, LA, von Dadelszen, P, van 't Hooft, J, Gale, C, Brown, M, Chappell, LC, Grobman, WA, Fitzpatrick, R, Karumanchi, SA, Lucas, DN, Mol, B, Stark, M, Thangaratinam, S, Wilson, MJ, Williamson, PR, Ziebland, S, McManus, RJ, and International Collaboration to Harmonise Outcomes for Pre-eclampsia (iHOPE)

Abstract

OBJECTIVES: To develop consensus definitions for the core outcome set for pre-eclampsia. STUDY DESIGN: Potential definitions for individual core outcomes were identified across four formal definition development initiatives, nine national and international guidelines, 12 Cochrane systematic reviews, and 79 randomised trials. Eighty-six definitions were entered into the consensus development meeting. Ten healthcare professionals and three researchers, including six participants who had experience of conducting research in low- and middle-income countries, participated in the consensus development process. The final core outcome set was approved by an international steering group. RESULTS: Consensus definitions were developed for all core outcomes. When considering stroke, pulmonary oedema, acute kidney injury, raised liver enzymes, low platelets, birth weight, and neonatal seizures, consensus definitions were developed specifically for low- and middle-income countries because of the limited availability of diagnostic interventions including computerised tomography, chest x-ray, laboratory tests, equipment, and electroencephalogram monitoring. CONCLUSIONS: Consensus on measurements for the pre-eclampsia core outcome set will help to ensure consistency across future randomised trials and systematic reviews. Such standardization should make research evidence more accessible and facilitate the translation of research into clinical practice. Video abstract can be available at: www.dropbox.com/s/ftrgvrfu0u9glqd/6.%20Standardising%20definitions%20in%20teh%20pre-eclampsia%20core%20outcome%20set%3A%20a%20consensus%20development%20study.mp4?dl=0.

Published
2020

7. Standardising definitions for the pre-eclampsia core outcome set: A consensus development study.

Author

Duffy, JMN, Cairns, AE, Magee, LA, von Dadelszen, P, van 't Hooft, J, Gale, C, Brown, M, Chappell, LC, Grobman, WA, Fitzpatrick, R, Karumanchi, SA, Lucas, DN, Mol, B, Stark, M, Thangaratinam, S, Wilson, MJ, Williamson, PR, Ziebland, S, McManus, RJ, International Collaboration to Harmonise Outcomes for Pre-eclampsia (iHOPE), Duffy, JMN, Cairns, AE, Magee, LA, von Dadelszen, P, van 't Hooft, J, Gale, C, Brown, M, Chappell, LC, Grobman, WA, Fitzpatrick, R, Karumanchi, SA, Lucas, DN, Mol, B, Stark, M, Thangaratinam, S, Wilson, MJ, Williamson, PR, Ziebland, S, McManus, RJ, and International Collaboration to Harmonise Outcomes for Pre-eclampsia (iHOPE)

Abstract

OBJECTIVES: To develop consensus definitions for the core outcome set for pre-eclampsia. STUDY DESIGN: Potential definitions for individual core outcomes were identified across four formal definition development initiatives, nine national and international guidelines, 12 Cochrane systematic reviews, and 79 randomised trials. Eighty-six definitions were entered into the consensus development meeting. Ten healthcare professionals and three researchers, including six participants who had experience of conducting research in low- and middle-income countries, participated in the consensus development process. The final core outcome set was approved by an international steering group. RESULTS: Consensus definitions were developed for all core outcomes. When considering stroke, pulmonary oedema, acute kidney injury, raised liver enzymes, low platelets, birth weight, and neonatal seizures, consensus definitions were developed specifically for low- and middle-income countries because of the limited availability of diagnostic interventions including computerised tomography, chest x-ray, laboratory tests, equipment, and electroencephalogram monitoring. CONCLUSIONS: Consensus on measurements for the pre-eclampsia core outcome set will help to ensure consistency across future randomised trials and systematic reviews. Such standardization should make research evidence more accessible and facilitate the translation of research into clinical practice. Video abstract can be available at: www.dropbox.com/s/ftrgvrfu0u9glqd/6.%20Standardising%20definitions%20in%20teh%20pre-eclampsia%20core%20outcome%20set%3A%20a%20consensus%20development%20study.mp4?dl=0.

Published
2020

8. Depression at work, authenticity in question: Experiencing, concealing and revealing

Author

Ridge, D, Broom, A, Kokanović, R, Ziebland, S, Hill, N, Ridge, D, Broom, A, Kokanović, R, Ziebland, S, and Hill, N

Abstract

Australia and the United Kingdom have introduced policies to protect employees who experience mental illness, including depression. However, a better understanding of the experiential issues workers face (e.g. sense of moral failure) is needed for the provision of appropriate and beneficial support. We analysed 73 interviews from the United Kingdom and Australia where narratives of depression and work intersected. Participants encountered difficulties in being (and performing as if) ‘authentic’ at work, with depression contributing to confusions about the self. The diffuse post-1960s imperative to ‘be yourself’ is experienced in conflicting ways: while some participants sought support from managers and colleagues (e.g. sick leave, back-to-work plans), many others put on a façade in an attempt to perform the ‘well’ and ‘authentic’ employee. We outline the contradictory forces at play for participants when authenticity and visibility are expected, yet, moral imperatives to be good (healthy) employees are normative.

Published
2017

9. An open letter to The BMJ editors on qualitative research

Author

Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., May, A.L., Légaré, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G.P., Wilkinson, S., Williams, B., Young, T., Ziebland, S., Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., May, A.L., Légaré, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G.P., Wilkinson, S., Williams, B., Young, T., and Ziebland, S.

Abstract

Contains fulltext : 165909.pdf (publisher's version ) (Open Access)

Published
2016

10. An open letter to The BMJ editors on qualitative research

Author

Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., May, A.L., Légaré, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G.P., Wilkinson, S., Williams, B., Young, T., Ziebland, S., Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., May, A.L., Légaré, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G.P., Wilkinson, S., Williams, B., Young, T., and Ziebland, S.

Abstract

Contains fulltext : 165909.pdf (publisher's version ) (Open Access)

Published
2016

11. An open letter to The BMJ editors on qualitative research

Author

Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., May, A.L., Légaré, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G.P., Wilkinson, S., Williams, B., Young, T., Ziebland, S., Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., May, A.L., Légaré, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G.P., Wilkinson, S., Williams, B., Young, T., and Ziebland, S.

Abstract

Contains fulltext : 165909.pdf (publisher's version ) (Open Access)

Published
2016

12. An open letter to The BMJ editors on qualitative research

Author

Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., Le May, A., Legare, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G., Wilkinson, S., Williams, B., Young, T., Ziebland, S., Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., Le May, A., Legare, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G., Wilkinson, S., Williams, B., Young, T., and Ziebland, S.

Published
2016

13. An open letter to The BMJ editors on qualitative research

Author

Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., Le May, A., Legare, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G., Wilkinson, S., Williams, B., Young, T., Ziebland, S., Greenhalgh, T., Annandale, E., Ashcroft, R., Barlow, J., Black, N., Bleakley, A., Boaden, R., Braithwaite, J., Britten, N., Carnevale, F., Checkland, K., Cheek, J., Clark, A., Cohn, S., Coulehan, J., Crabtree, B., Cummins, S., Davidoff, F., Davies, H., Dingwall, R., Dixon-Woods, M., Elwyn, G., Engebretsen, E., Ferlie, E., Fulop, N., Gabbay, J., Gagnon, M.P., Galasinski, D., Garside, R., Gilson, L., Griffiths, P., Hawe, P., Helderman, J.K., Hodges, B., Hunter, D., Kearney, M., Kitzinger, C., Kitzinger, J., Kuper, A., Kushner, S., Le May, A., Legare, F., Lingard, L., Locock, L., Maben, J., Macdonald, M.E., Mair, F., Mannion, R., Marshall, M., May, C., Mays, N., McKee, L., Miraldo, M., Morgan, D., Morse, J., Nettleton, S., Oliver, S., Pearce, W., Pluye, P., Pope, C., Robert, G., Roberts, C., Rodella, S., Rycroft-Malone, J., Sandelowski, M., Shekelle, P., Stevenson, F., Straus, S., Swinglehurst, D., Thorne, S., Tomson, G., Westert, G., Wilkinson, S., Williams, B., Young, T., and Ziebland, S.

Published
2016

14. What parents say about disclosing the end of their pregnancy due to fetal abnormality

Author

France, E.F., Hunt, K., Ziebland, S., Wyke, S., France, E.F., Hunt, K., Ziebland, S., and Wyke, S.

Abstract

Item does not contain fulltext, OBJECTIVE: to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality. DESIGN: secondary analysis of qualitative narrative interview data informed by a critical realist approach. SETTING: respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005. PARTICIPANTS: twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others. FINDINGS: few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks beca

Published
2013

15. What parents say about disclosing the end of their pregnancy due to fetal abnormality

Author

France, E.F., Hunt, K., Ziebland, S., Wyke, S., France, E.F., Hunt, K., Ziebland, S., and Wyke, S.

Abstract

Item does not contain fulltext, OBJECTIVE: to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality. DESIGN: secondary analysis of qualitative narrative interview data informed by a critical realist approach. SETTING: respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005. PARTICIPANTS: twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others. FINDINGS: few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks beca

Published
2013

16. What parents say about disclosing the end of their pregnancy due to fetal abnormality

Author

France, E.F., Hunt, K., Ziebland, S., Wyke, S., France, E.F., Hunt, K., Ziebland, S., and Wyke, S.

Abstract

Item does not contain fulltext, OBJECTIVE: to describe men's and women's experiences of deciding whether to tell people in their social network, including their children, about their pregnancy loss following a termination for fetal abnormality. DESIGN: secondary analysis of qualitative narrative interview data informed by a critical realist approach. SETTING: respondents were recruited throughout the United Kingdom and interviewed at home between 2004 and 2005. PARTICIPANTS: twenty-eight women and nine men who had ended a pregnancy diagnosed with a fetal abnormality and who talked about disclosing or not disclosing the termination to others. FINDINGS: few respondents reported having any advice or information about whether or how to disclose their termination. None said they completely concealed their decision from adults in their social network; most said they disclosed selectively, telling close friends and family they had terminated and acquaintances they had miscarried. Most respondents reported telling their young children that the baby had died but did not reveal that they had chosen to end the pregnancy. A minority had not told their existing offspring about the pregnancy loss. Common reasons given for (partially) concealing a termination were: guilt over the decision; to avoid being judged; and to protect other people's feelings. Common reasons for disclosure were: others knew of the pregnancy; needing time off work; needing practical help and/or emotional support during diagnosis and termination; and wanting recognition of their loss. Positive consequences of disclosure were said to be getting more support and less criticism than expected; negative consequences included not getting the anticipated support and empathy; and encountering disapproval. Some respondents felt that concealing their pregnancy loss from their children had resulted in their confusion over the cause of their parents' distress. Some men said they found it hard to access emotional support from their social networks beca

Published
2013

17. Health and illness in a connected world: how might sharing experiences on the internet affect people's health?

Author

Ziebland, S., Wyke, S., Ziebland, S., and Wyke, S.

Abstract

Item does not contain fulltext, CONTEXT: The use of the Internet for peer-to-peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients' accounts of their experiences with health and health care, which includes the development and validation of a new e-health impact questionnaire. METHODS: We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel. FINDINGS: We identified seven domains through which online patients' experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources. CONCLUSIONS: The value of first-person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others' accounts of their own experiences of health and illnesss will remain a key feature of e-health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients' experiences

Published
2012

18. Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality

Author

France, E.F., Locock, L., Hunt, K., Ziebland, S., Field, K., Wyke, S., France, E.F., Locock, L., Hunt, K., Ziebland, S., Field, K., and Wyke, S.

Abstract

Contains fulltext : 108218.pdf (publisher's version ) (Open Access), BACKGROUND: Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. OBJECTIVE: To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality. DESIGN: Secondary analysis of qualitative narrative interview data informed by contextual systems framework. SETTING: Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. PARTICIPANTS: Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. FINDINGS: Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy. DISCUSSION: Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions.

Published
2012

19. Health and illness in a connected world: how might sharing experiences on the internet affect people's health?

Author

Ziebland, S., Wyke, S., Ziebland, S., and Wyke, S.

Abstract

Item does not contain fulltext, CONTEXT: The use of the Internet for peer-to-peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients' accounts of their experiences with health and health care, which includes the development and validation of a new e-health impact questionnaire. METHODS: We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel. FINDINGS: We identified seven domains through which online patients' experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources. CONCLUSIONS: The value of first-person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others' accounts of their own experiences of health and illnesss will remain a key feature of e-health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients' experiences

Published
2012

20. Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality

Author

France, E.F., Locock, L., Hunt, K., Ziebland, S., Field, K., Wyke, S., France, E.F., Locock, L., Hunt, K., Ziebland, S., Field, K., and Wyke, S.

Abstract

Contains fulltext : 108218.pdf (publisher's version ) (Open Access), BACKGROUND: Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. OBJECTIVE: To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality. DESIGN: Secondary analysis of qualitative narrative interview data informed by contextual systems framework. SETTING: Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. PARTICIPANTS: Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. FINDINGS: Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy. DISCUSSION: Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions.

Published
2012

21. Health and illness in a connected world: how might sharing experiences on the internet affect people's health?

Author

Ziebland, S., Wyke, S., Ziebland, S., and Wyke, S.

Abstract

Item does not contain fulltext, CONTEXT: The use of the Internet for peer-to-peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients' accounts of their experiences with health and health care, which includes the development and validation of a new e-health impact questionnaire. METHODS: We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel. FINDINGS: We identified seven domains through which online patients' experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources. CONCLUSIONS: The value of first-person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others' accounts of their own experiences of health and illnesss will remain a key feature of e-health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients' experiences

Published
2012

22. Imagined futures: how experiential knowledge of disability affects parents' decision making about fetal abnormality

Author

France, E.F., Locock, L., Hunt, K., Ziebland, S., Field, K., Wyke, S., France, E.F., Locock, L., Hunt, K., Ziebland, S., Field, K., and Wyke, S.

Abstract

Contains fulltext : 108218.pdf (publisher's version ) (Open Access), BACKGROUND: Knowledge of disability is considered key information to enable informed antenatal screening decisions by expectant parents. However, little is known about the role of experiential knowledge of disability in decisions to terminate or continue with a pregnancy diagnosed with a fetal abnormality. OBJECTIVE: To explore the role that expectant parents' experiential knowledge of disabilities and conditions can play in real-life decisions to continue or end a pregnancy with a fetal abnormality. DESIGN: Secondary analysis of qualitative narrative interview data informed by contextual systems framework. SETTING: Participants were recruited throughout the United Kingdom and interviewed between 2004 and 2006. PARTICIPANTS: Twenty-four women and four of their male partners who had direct or indirect experience of disability or illness and who had proceeded with or ended a pregnancy diagnosed with a fetal abnormality. FINDINGS: Most respondents recounted using their experiential knowledge of disability, whether of their unborn baby's condition or of a different condition, to try to imagine the future for their unborn child, themselves and their family when making their decision. Some, who were considering continuing their pregnancy and had little or no experience of their unborn baby's specific disability, sought out others' experiences of the condition following antenatal diagnosis.The nature of a parent's experiential knowledge did not predict whether they continued with or terminated their pregnancy. DISCUSSION: Prospective parents may find it helpful to discuss their existing knowledge of their unborn baby's condition with health professionals who are aware of the influence this might have on parents' decisions.

Published
2012

25. Comparison of two approaches to measuring change in health status in rheumatoid arthritis: the Health Assessment Questionnaire (HAQ) and modified HAQ.

Author

Ziebland, S, Fitzpatrick, R, Jenkinson, C, Mowat, A, Ziebland, S, Fitzpatrick, R, Jenkinson, C, and Mowat, A

Abstract

As an alternative to the calculation of change scores for health status questionnaires used in clinical trials or longitudinal studies, transitional questions have been developed for patients to assess changes directly themselves. Here the original Health Assessment Questionnaire (HAQ) is compared with a modified version of the HAQ (MHAQ) which contains transition questions used at follow up. These, together with a set of standard rheumatological tests, were all completed by 100 patients with rheumatoid arthritis on two occasions, three months apart. Change scores were calculated for the HAQ and for the clinical measures and compared with the MHAQ. The results were strikingly in favour of encouraging patients to assess their own degree of change through the use of transition questions in the MHAQ.

Published
1992

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