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6. Fundamental nursing care in patients with the SARS-CoV-2 virus: results from the ‘COVID-NURSE’ mixed methods survey into nurses’ experiences of missed care and barriers to care

Author

Sugg, Holly V. R., Russell, Anne-Marie, Morgan, Leila M., Iles-Smith, Heather, Richards, David A., Morley, Naomi, Burnett, Sarah, Cockcroft, Emma J., Thompson Coon, Jo, Cruickshank, Susanne, Doris, Faye E., Hunt, Harriet A., Kent, Merryn, Logan, Philippa A., Rafferty, Anne Marie, Shepherd, Maggie H., Singh, Sally J., Tooze, Susannah J., and Whear, Rebecca

Published
2021
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7. Evaluation of a COVID‐19 fundamental nursing care guideline versus usual care: The COVID‐NURSE cluster randomized controlled trial

Author

Richards, David A., primary, Bollen, Jess, additional, Jones, Ben, additional, Melendez‐Torres, G. J., additional, Hulme, Claire, additional, Cockcroft, Emma, additional, Cook, Heather, additional, Cooper, Joanne, additional, Creanor, Siobhan, additional, Cruickshank, Susanne, additional, Dawe, Phoebe, additional, Doris, Faye, additional, Iles‐Smith, Heather, additional, Kent, Merryn, additional, Logan, Pip, additional, O'Connell, Abby, additional, Onysk, Jakub, additional, Owens, Rosie, additional, Quinn, Lynne, additional, Rafferty, Anne Marie, additional, Romanczuk, Lidia, additional, Russell, Anne Marie, additional, Shepherd, Maggie, additional, Singh, Sally J., additional, Sugg, Holly V. R., additional, Coon, Jo Thompson, additional, Tooze, Susannah, additional, Warren, Fiona C., additional, Whale, Bethany, additional, and Wootton, Stephen, additional

Published
2023
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9. Effectiveness and safety of long-term treatment with sulfonylureas in patients with neonatal diabetes due to KCNJ11 mutations: an international cohort study

Author

Aisenberg, Javier, Akkurt, Ilker, Abdul-Latif, Hussein, Al-Abdullah, Anees, Barak, Lubomir, Van Den Bergh, Joop, Bertrand, Anne-Marie, Bizzarri, Carla, Bonfanti, Riccardo, Bruel, Henri, Burrows, Anthony, Cadario, Francesco, Cameron, Fergus J., Carson, Dennis, Cartigny, Maryse, Cauvin, Vittoria, Cave, Helene, Chakera, Ali, Chetan, Ravi, Chiari, Giovanni, Couch, Bob, Coutant, Régis, Cummings, Elizabeth, Dankovcikova, Adriana, Davis, Liz, Deiss, Dorothee, Delvecchio, Maurizio, Faleschini, Elena, Fauret, Anne-Laure, Finn, Roisin, Ford, Tamsin, Franco, Elisa De, Gallen, Bastian De, Gasperíková, Daniela, Guntamukkala, Padma, Hakeem, Vaseem, Hasegawa, Shinji, Hathout, Eba H., Heffernan, Emmeline, Hill, David, Ho, Josephine, Hoarau, Marie, Holl, Reinhard, Hoddinott, Rebecca, Houghton, Jane, Howard, Neville, Hughes, Natalie, Hunter, Ian, Høgåsen, Anne Kirsti, Kuulasmaa, Helena, Ioacara, Sorin, Iotova, Violeta, Irgens, Henrik, Jaap, Alan, Jones, Kenneth, Kapellen, Thomas, Kaufman, Ellen, Klinge, Andreas, Klupa, Tomasz, Krishnaswamy, Ramaiyer, Lafferty, Tony, LeGault, Laurent, Lambert, Paul, Malecki, Maciej T, Malievsky, Olag, Mathew, Revi, Mathews, Frances, McVie, Robert, Menzel, Ulrike, Metz, Chantale, Meulen, John Van Der, Modgil, Gita, Mul, Dick, Muther, Silvia, Nuboer, Roos, O'Connell, Susan M., O'Riordan, Stephen, Palko, Miroslav, Patel, Kashyap Amratlal, Pesavento, Roberta, Piccinno, Elvira, Pillai, Janani Kumaraguru, Pruhova, Stephanka, Punthakee, Zubin, Rabbone, Ivana, Raile, Klemens, Rincon, Marielisa, Rose, Danette, Sanchez, Janine, Sandereson, Susan, Saxena, Vinay, Schebek, Martin, Schmidt, Dorothee, Shehadeh, Naim, Shiels, Julian P.H., Silva, Jose M. C. L, Stanik, Juraj, Tinklin, Tracy, Tjora, Erling, Tumini, Stefano, Tuomi, Tiinamaija, Uehara, Akiko, Velde, Robert Van der, Vermeulen, Guido, Visser, Uma, Voorhoeve, Paul, Walker, Jan, Weill, Jaques, Weisner, Tobias, Werner, Andrea, Williams, Toni, Woodhead, Helen, øddegård, Rønnaug, Bowman, Pamela, Sulen, Åsta, Barbetti, Fabrizio, Beltrand, Jacques, Svalastoga, Pernille, Codner, Ethel, Tessmann, Ellen H, Juliusson, Petur B, Skrivarhaug, Torild, Pearson, Ewan R, Flanagan, Sarah E, Babiker, Tarig, Thomas, Nicholas J, Shepherd, Maggie H, Ellard, Sian, Klimes, Iwar, Szopa, Magdalena, Polak, Michel, Iafusco, Dario, Hattersley, Andrew T, and Njølstad, Pål R

Published
2018
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11. Incretin hormone responses to carbohydrate and protein/fat are preserved in adults with sulfonylurea‐treated KCNJ11 neonatal diabetes

Author

Bowman, Pamela, primary, Patel, Kashyap A, additional, McDonald, Timothy J, additional, Holst, Jens J, additional, Hartmann, Bolette, additional, Leveridge, Maria, additional, Shields, Beverley M, additional, Hammersley, Suzie, additional, Spaull, Steve R, additional, Knight, Bridget A, additional, Flanagan, Sarah E, additional, Shepherd, Maggie H, additional, Andrews, Rob C, additional, and Hattersley, Andrew T, additional

Published
2023
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12. Incretin hormone responses to carbohydrate and protein/fat are preserved in adults with sulfonylurea-treated KCNJ11 neonatal diabetes

Author

Bowman, Pamela, Patel, Kashyap A., McDonald, Timothy J., Holst, Jens J., Hartmann, Bolette, Leveridge, Maria, Shields, Beverley M., Hammersley, Suzie, Spaull, Steve R., Knight, Bridget A., Flanagan, Sarah E., Shepherd, Maggie H., Andrews, Rob C., Hattersley, Andrew T., Bowman, Pamela, Patel, Kashyap A., McDonald, Timothy J., Holst, Jens J., Hartmann, Bolette, Leveridge, Maria, Shields, Beverley M., Hammersley, Suzie, Spaull, Steve R., Knight, Bridget A., Flanagan, Sarah E., Shepherd, Maggie H., Andrews, Rob C., and Hattersley, Andrew T.

Abstract

The incretin hormones glucagon-like peptide-1 (GLP-1) and glucose-dependent insulinotropic polypeptide (GIP), are thought to be the main drivers of insulin secretion in individuals with sulfonylurea (SU)-treated KCNJ11 permanent neonatal diabetes. The aim of this study was to assess for the first time the incretin hormone response to carbohydrate and protein/fat in adults with sulfonylurea-treated KCNJ11 permanent neonatal diabetes compared with that of controls without diabetes. Participants were given a breakfast high in carbohydrate and an isocaloric breakfast high in protein/fat on two different mornings. Incremental area under the curve and total area under the curve (0-240 minutes) for total GLP-1 and GIP were compared between groups, using non-parametric statistical methods. Post-meal GLP-1 and GIP secretion were similar in cases and controls, suggesting this process is adenosine triphosphate-sensitive potassium channel-independent. Future research will investigate whether treatments targeting the incretin pathway are effective in individuals with KCNJ11 permanent neonatal diabetes who do not have good glycemic control on sulfonylurea alone.

Published
2023

15. Defining the nuclear genetic architecture of a common maternally inherited mitochondrial disorder

Author

Boggan, Róisín M., primary, Ng, Yi Shiau, additional, Franklin, Imogen G., additional, Alston, Charlotte L., additional, Blakely, Emma L., additional, Büchner, Boriana, additional, Bugiardini, Enrico, additional, Colclough, Kevin, additional, Feeney, Catherine, additional, Hanna, Michael G., additional, Hattersley, Andrew T., additional, Klopstock, Thomas, additional, Kornblum, Cornelia, additional, Mancuso, Michelangelo, additional, Patel, Kashyap A., additional, Pitceathly, Robert D. S., additional, Pizzamiglio, Chiara, additional, Prokisch, Holger, additional, Schäfer, Jochen, additional, Schaefer, Andrew M., additional, Shepherd, Maggie H., additional, Thaele, Annemarie, additional, Thomas, Rhys H, additional, Turnbull, Doug M., additional, Woodward, Cathy E., additional, Gorman, Gráinne S., additional, McFarland, Robert, additional, Taylor, Robert W., additional, Cordell, Heather J., additional, and Pickett, Sarah J., additional

Published
2022
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17. Nurses' strategies for overcoming barriers to fundamental nursing care in patients with COVID-19 caused by infection with the SARS-COV-2 virus: Results from the 'COVID-NURSE' survey

Author

Sugg, Holly V. R., Richards, David A., Russell, Anne-Marie, Burnett, Sarah Burnett, Cockcroft, Emma J., Thompson Coon, Jo, Doris, Faye E., Hunt, Harriet A., Iles-Smith, Heather, Kent, Merryn, Logan, Philippa A., Morgan, Leila M., Morley, Naomi, Rafferty, Anne Marie, Shepherd, Maggie H., Singh, Sally J., Tooze, Susannah J., and Whear, Rebecca

Abstract

Aims\ud To identify strategies used by registered nurses and non-registered nursing care staff in overcoming barriers when providing fundamental nursing care for non-invasively ventilated inpatients with COVID-19.\ud \ud Design\ud Online survey with open-ended questions to collect qualitative data.\ud \ud Methods\ud In August 2020, we asked UK-based nursing staff to describe any strategies they employed to overcome barriers to delivering care in 15 fundamental nursing care categories when providing care to non-invasively ventilated patients with COVID-19. We analysed data using Framework Analysis.\ud \ud Results\ud A total of 1062 nurses consented to participate in our survey. We derived four themes. 1) Communication behaviours included adapting verbal and non-verbal communication with patients, using information technology to enable patients’ significant others to communicate with staff and patients, and establishing clear information-sharing methods with other staff. 2) Organizing care required clustering interventions, carefully managing supplies, encouraging patient self-care and using ‘runners’ and interdisciplinary input. 3) Addressing patients’ well-being and values required spending time with patients, acting in loco familiae, providing access to psychological and spiritual support, obtaining information about patients’ wishes early on and providing privacy and comforting/meaningful items. 4) Management and leadership behaviours included training, timely provision of pandemic information, psychological support, team huddles and facilitating regular breaks.\ud \ud Conclusions\ud Our respondents identified multiple strategies in four main areas of clinical practice. Management and leadership are crucial to both fundamental care delivery and the well-being of nurses during pandemics. Grouping strategies into these areas of action may assist nurses and leaders to prepare for pandemic nursing.\ud \ud Impact\ud As these strategies are unlikely to be exclusive to the COVID-19 pandemic, their global dissemination may improve patient experience and help nurses deliver fundamental care when planning pandemic nursing. However, their effectiveness is unknown. Therefore, we are currently evaluating these strategies in a cluster randomized controlled trial.

Published
2022

18. Nurses' strategies for overcoming barriers to fundamental nursing care in patients with COVID‐19 caused by infection with the SARS‐COV‐2 virus: Results from the 'COVID‐NURSE' survey.

Author

Sugg, Holly V. R., Richards, David A., Russell, Anne‐Marie, Burnett, Sarah, Cockcroft, Emma J., Thompson Coon, Jo, Cruickshank, Susanne, Doris, Faye E., Hunt, Harriet A., Iles‐Smith, Heather, Kent, Merryn, Logan, Philippa A., Morgan, Leila M., Morley, Naomi, Rafferty, Anne Marie, Shepherd, Maggie H., Singh, Sally J., Tooze, Susannah J., and Whear, Rebecca

Subjects
OCCUPATIONAL roles, TEAMS in the workplace, COVID-19, NURSING, HEALTH services accessibility, ARTIFICIAL respiration, SURVEYS, QUALITATIVE research, NURSE-patient relationships, NURSES, DESCRIPTIVE statistics, HEALTH care teams, COMMUNICATION, RESEARCH funding, DATA analysis software, THEMATIC analysis, WORLD Wide Web
Abstract

Aims: To identify strategies used by registered nurses and non‐registered nursing care staff in overcoming barriers when providing fundamental nursing care for non‐invasively ventilated inpatients with COVID‐19. Design: Online survey with open‐ended questions to collect qualitative data. Methods: In August 2020, we asked UK‐based nursing staff to describe any strategies they employed to overcome barriers to delivering care in 15 fundamental nursing care categories when providing care to non‐invasively ventilated patients with COVID‐19. We analysed data using Framework Analysis. Results: A total of 1062 nurses consented to participate in our survey. We derived four themes. 1) Communication behaviours included adapting verbal and non‐verbal communication with patients, using information technology to enable patients' significant others to communicate with staff and patients, and establishing clear information‐sharing methods with other staff. 2) Organizing care required clustering interventions, carefully managing supplies, encouraging patient self‐care and using 'runners' and interdisciplinary input. 3) Addressing patients' well‐being and values required spending time with patients, acting in loco familiae, providing access to psychological and spiritual support, obtaining information about patients' wishes early on and providing privacy and comforting/meaningful items. 4) Management and leadership behaviours included training, timely provision of pandemic information, psychological support, team huddles and facilitating regular breaks. Conclusions: Our respondents identified multiple strategies in four main areas of clinical practice. Management and leadership are crucial to both fundamental care delivery and the well‐being of nurses during pandemics. Grouping strategies into these areas of action may assist nurses and leaders to prepare for pandemic nursing. Impact As these strategies are unlikely to be exclusive to the COVID‐19 pandemic, their global dissemination may improve patient experience and help nurses deliver fundamental care when planning pandemic nursing. However, their effectiveness is unknown. Therefore, we are currently evaluating these strategies in a cluster randomized controlled trial. [ABSTRACT FROM AUTHOR]

Published
2023
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22. Evaluation of a COVID-19 Fundamental Nursing Care Guideline (COVID-NURSE) Versus Usual Care: A Cluster Randomised Controlled Trial

Author

Richards, David A., primary, Bollen, Jess, additional, Jones, Benjamin, additional, Melendez-Torres, G. J., additional, Hulme, Claire, additional, Cockcroft, Emma, additional, Cook, Heather, additional, Cooper, Joanne, additional, Creanor, Siobhan, additional, Cruickshank, Susanne, additional, Dawe, Phoebe, additional, Doris, Faye, additional, Iles-Smith, Heather, additional, Kent, Merryn, additional, Logan, Philippa Anne, additional, O'Connell, Abby, additional, Onysk, Jakub, additional, Owens, Rosie, additional, Quinn, Lynne, additional, Rafferty, Anne Marie, additional, Romanczuk, Lidia, additional, Russell, Anne-Marie, additional, Shepherd, Maggie, additional, Singh, Sally J., additional, Sugg, Holly V. R., additional, Thompson Coon, Jo, additional, Tooze, Susannah, additional, Warren, Fiona C., additional, Whale, Bethany, additional, and Wootton, Stephen, additional

Published
2022
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24. Association of birthweight and penetrance of diabetes in individuals with HNF4A-MODY: a cohort study

Author

Locke, Jonathan M., primary, Dusatkova, Petra, additional, Colclough, Kevin, additional, Hughes, Alice E., additional, Dennis, John M., additional, Shields, Beverley, additional, Flanagan, Sarah E., additional, Shepherd, Maggie H., additional, Dempster, Emma L., additional, Hattersley, Andrew T., additional, Weedon, Michael N., additional, Pruhova, Stepanka, additional, and Patel, Kashyap A., additional

Published
2021
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25. Impact of COVID‐19 and other infectious conditions requiring isolation on the provision of and adaptations to fundamental nursing care in hospital in terms of overall patient experience, care quality, functional ability, and treatment outcomes: systematic review

Author

Whear, Rebecca, primary, Abbott, Rebecca A., additional, Bethel, Alison, additional, Richards, David A., additional, Garside, Ruth, additional, Cockcroft, Emma, additional, Iles‐Smith, Heather, additional, Logan, Pip A., additional, Rafferty, Ann Marie, additional, Shepherd, Maggie, additional, Sugg, Holly V. R., additional, Russell, Anne Marie, additional, Cruickshank, Susanne, additional, Tooze, Susannah, additional, Melendez‐Torres, GJ, additional, and Thompson Coon, Jo, additional

Published
2021
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28. Additional file 1 of Fundamental nursing care in patients with the SARS-CoV-2 virus: results from the ���COVID-NURSE��� mixed methods survey into nurses��� experiences of missed care and barriers to care

Author

Sugg, Holly V. R., Russell, Anne-Marie, Morgan, Leila M., Iles-Smith, Heather, Richards, David A., Morley, Naomi, Burnett, Sarah, Cockcroft, Emma J., Thompson Coon, Jo, Cruickshank, Susanne, Doris, Faye E., Hunt, Harriet A., Kent, Merryn, Logan, Philippa A., Rafferty, Anne Marie, Shepherd, Maggie H., Singh, Sally J., Tooze, Susannah J., and Whear, Rebecca

Subjects
GeneralLiterature_INTRODUCTORYANDSURVEY
Abstract

Additional file 1. Number of respondents providing data per survey item/ selecting each option within each survey item.

Published
2021
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30. A diagnosis of monogenic neonatal diabetes can improve treatment and glycaemic control

Author

Shepherd, Maggie, Cropper, Julie, Flanagan, Sarah, Ellard, Sian, and Hattersley, Andrew

Subjects
Infants (Newborn) -- Diseases, Diabetes -- Care and treatment -- Diagnosis -- Control -- Genetic aspects, Health, Health care industry
Abstract

Neonatal diabetes presents before 6 months of age, and previously required lifelong treatment with insulin. However, recent advances in genetic knowledge have led to the identification of adenosine triphosphate (ATP)-sensitive [...]

Published
2011

31. Differential diagnosis: identifying people with monogenic diabetes

Author

Shepherd, Maggie, Miles, Sylvia, Jones, Jackie, Morel, Kate, Ellard, Sian, and Hattersley, Andrew

Subjects
Diabetics -- Health aspects -- Medical examination -- Prognosis, Nurses -- Practice, Health, Health care industry
Abstract

Maturity-onset diabetes of the young (MODY) is initially misdiagnosed in 90% of cases, resulting in inappropriate advice and treatment. Lack of familiarity with the key characteristics of MODY--autosomal dominant inheritance, [...]

Published
2010

34. COVID-NURSE: evaluation of a fundamental nursing care protocol compared with care as usual on experience of care for noninvasively ventilated patients in hospital with the SARS-CoV-2 virus—protocol for a cluster randomised controlled trial

Author

Richards, David A, primary, Sugg, Holly VR, additional, Cockcroft, Emma, additional, Cooper, Joanne, additional, Cruickshank, Susanne, additional, Doris, Faye, additional, Hulme, Claire, additional, Logan, Phillipa, additional, Iles-Smith, Heather, additional, Melendez-Torres, G.J, additional, Rafferty, Anne Marie, additional, Reed, Nigel, additional, Russell, Anne-Marie, additional, Shepherd, Maggie, additional, Singh, Sally J, additional, Thompson Coon, Jo, additional, Tooze, Susannah, additional, Wootton, Stephen, additional, Abbott, Rebecca, additional, Bethel, Alison, additional, Creanor, Siobhan, additional, Quinn, Lynne, additional, Tripp, Harry, additional, Warren, Fiona C, additional, Whear, Rebecca, additional, Bollen, Jessica, additional, Hunt, Harriet A, additional, Kent, Merryn, additional, Morgan, Leila, additional, Morley, Naomi, additional, and Romanczuk, Lidia, additional

Published
2021
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35. Impact of misdiagnosis in HNF1A diabetes: a case study

Author

Shepherd, Maggie

Subjects
Diabetes -- Diagnosis -- Care and treatment, Diagnostic errors -- Causes of -- Control -- Usage -- Methods, Genetic screening -- Usage -- Methods, Health, Health care industry
Abstract

Maturity-onset diabetes of the young (MODY) accounts for 1-2 % of diabetes in the UK but is frequently misdiagnosed as type 1 diabetes. Identifying the different subtypes of MODY by [...]

Published
2008

36. Absence of Islet Autoantibodies and Modestly Raised Glucose Values at Diabetes Diagnosis Should Lead to Testing for MODY : Lessons From a 5-Year Pediatric Swedish National Cohort Study

Author

Carlsson, Annelie, Shepherd, Maggie, Ellard, Sian, Weedon, Michael, Lernmark, Ake, Forsander, Gun, Colclough, Kevin, Brahimi, Qefsere, Valtonen-Andre, Camilla, Ivarsson, Sten A., Elding Larsson, Helena, Samuelsson, Ulf, Ortqvist, Eva, Groop, Leif, Ludvigsson, Johnny, Marcus, Claude, Hattersley, Andrew T., Carlsson, Annelie, Shepherd, Maggie, Ellard, Sian, Weedon, Michael, Lernmark, Ake, Forsander, Gun, Colclough, Kevin, Brahimi, Qefsere, Valtonen-Andre, Camilla, Ivarsson, Sten A., Elding Larsson, Helena, Samuelsson, Ulf, Ortqvist, Eva, Groop, Leif, Ludvigsson, Johnny, Marcus, Claude, and Hattersley, Andrew T.

Abstract

OBJECTIVE Identifying maturity-onset diabetes of the young (MODY) in pediatric populations close to diabetes diagnosis is difficult. Misdiagnosis and unnecessary insulin treatment are common. We aimed to identify the discriminatory clinical features at diabetes diagnosis of patients with glucokinase (GCK), hepatocyte nuclear factor-1A (HNF1A), and HNF4A MODY in the pediatric population. RESEARCH DESIGN AND METHODS Swedish patients (n = 3,933) aged 1–18 years, diagnosed with diabetes May 2005 to December 2010, were recruited from the national consecutive prospective cohort Better Diabetes Diagnosis. Clinical data, islet autoantibodies (GAD insulinoma antigen-2, zinc transporter 8, and insulin autoantibodies), HLA type, and C-peptide were collected at diagnosis. MODY was identified by sequencing GCK, HNF1A, and HNF4A, through either routine clinical or research testing. RESULTS The minimal prevalence of MODY was 1.2%. Discriminatory factors for MODY at diagnosis included four islet autoantibody negativity (100% vs. 11% not-known MODY; P = 2 × 10−44), HbA1c (7.0% vs. 10.7% [53 vs. 93 mmol/mol]; P = 1 × 10−20), plasma glucose (11.7 vs. 26.7 mmol/L; P = 3 × 10−19), parental diabetes (63% vs. 12%; P = 1 × 10−15), and diabetic ketoacidosis (0% vs. 15%; P = 0.001). Testing 303 autoantibody-negative patients identified 46 patients with MODY (detection rate 15%). Limiting testing to the 73 islet autoantibody-negative patients with HbA1c <7.5% (58 mmol/mol) at diagnosis identified 36 out of 46 (78%) patients with MODY (detection rate 49%). On follow-up, the 46 patients with MODY had excellent glycemic control, with an HbA1c of 6.4% (47 mmol/mol), with 42 out of 46 (91%) patients not on insulin treatment. CONCLUSIONS At diagnosis of pediatric diabetes, absence of all islet autoantibodies and modest hyperglycemia (HbA1c <7.5% [58 mmol/mol]) should result in testing for GCK, HNF1A, and HNF4A MODY. Testing all 12% patients negative for four isl, Funding Agencies|Swedish Child Diabetes Foundation; National Institutes of HealthUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USA [DK-063861]; National Institute for Health Research (U.K.)National Institute for Health Research (NIHR); Wellcome TrustWellcome Trust; Wellcome TrustWellcome Trust [098395/Z/12/Z]

Published
2020
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37. Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

Author

Saukko, Paula M., Richards, Suzanne H., Shepherd, Maggie H., and Campbell, John L.

Subjects
Thrombosis, Deep vein -- Risk factors, Oral contraceptives, Medical genetics, Medical testing products, Medical tests, Genetic screening, Health, Social sciences
Abstract

To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.socscimed.2006.04.012 Byline: Paula M. Saukko (a), Suzanne H. Richards (b), Maggie H. Shepherd (c), John L. Campbell (b) Keywords: Genetic testing; Genetic risk; Thrombophilia; Deep vein thrombosis; Patient perceptions; UK Abstract: Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered 'exceptional' and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or 'in depth' knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support. Author Affiliation: (a) ESRC Centre for Genomics in Society, School of Humanities and Social Sciences, University of Exeter, Exeter, UK (b) Primary Care Research Group, Peninsula Medical School, University of Exeter and Plymouth, Exeter, UK (c) Institute of Biomedical & Clinical Science, Peninsula Medical School, Universities of Exeter and Plymouth, Exeter, UK

Published
2006

39. Integration of the MODY link nurse project: 20-month evaluation

Author

Shepherd, Maggie, Hattersley, Andrew, and Ellard, Sian

Subjects
Diabetes -- Care and treatment -- Genetic aspects, Diabetics -- Genetic aspects -- Care and treatment, Health, Health care industry, Care and treatment, Genetic aspects
Abstract

Introduction The MODY link nurse project is an educational initiative funded by the Department of Health to develop the integration of new genetic knowledge into diabetes care. MODY (maturity-onset diabetes [...]

Published
2005

40. MODY link nurses: pushing the boundaries of diabetes nursing

Author

Dudding, Sandra, McMahon, Heather, and Shepherd, Maggie

Subjects
Diabetes -- Diagnosis -- Care and treatment, Nursing -- Practice, Diabetics -- Care and treatment, Health, Health care industry, Practice, Diagnosis, Care and treatment
Abstract

Introduction The role of the MODY (maturity-onset diabetes of the young) link nurse (MLN) has enabled diabetes specialist nurses (DSNs) to step beyond the boundaries of their existing roles. The [...]

Published
2005

42. Meeting the needs of young people with diabetes: an ongoing challenge

Author

Jones, Kirsten, Hammersley, Suzie, and Shepherd, Maggie

Subjects
Medical research -- Research, Medicine, Experimental -- Research, Diabetes therapy -- User statistics -- Research, Diabetes -- Research -- Complications and side effects, Health, Health care industry, User statistics, Complications and side effects, Research
Abstract

Introduction Healthcare professionals can potentially have a significant impact on the health behaviour of adolescents. However, improvements in the consultation process are needed to actively engage young people in diabetes [...]

Published
2003

43. Integrating genetics into diabetes care: a new role for DSNs

Author

Shepherd, Maggie, Stride, Amanda, Ellard, Sian, and Hattersley, Andrew T.

Subjects
Diabetes -- Care and treatment -- Research, Nurses -- Practice -- Research, Health, Health care industry, Practice, Care and treatment, Research
Abstract

Introduction The importance of molecular genetic testing in diagnosing genetic subtypes of diabetes is well recognised as it can guide optimal treatment, help genetic counselling and explain the co-inheritance of [...]

Published
2003

45. Long-term follow-up of glycemic and neurological outcomes in an international series of patients with sulfonylurea-treated ABCC8 permanent neonatal diabetes

Author

Bowman, Pamela, primary, Mathews, Frances, primary, Barbetti, Fabrizio, primary, Shepherd, Maggie H., primary, Sanchez, Janine, primary, Piccini, Barbara, primary, Beltrand, Jacques, primary, Letourneau-Freiberg, Lisa R., primary, Polak, Michel, primary, Greeley, Siri Atma W., primary, Rawlins, Eamon, primary, Babiker, Tarig, primary, Thomas, Nicholas J., primary, Franco, Elisa De, primary, Ellard, Sian, primary, Flanagan, Sarah E., primary, Hattersley, Andrew T., primary, and Group, the Neonatal Diabetes International Collaborative, primary

Published
2020
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50. Absence of Islet Autoantibodies and Modestly Raised Glucose Values at Diabetes Diagnosis Should Lead to Testing for MODY: Lessons From a 5-Year Pediatric Swedish National Cohort Study

Author

Carlsson, Annelie, primary, Shepherd, Maggie, additional, Ellard, Sian, additional, Weedon, Michael, additional, Lernmark, Åke, additional, Forsander, Gun, additional, Colclough, Kevin, additional, Brahimi, Qefsere, additional, Valtonen-Andre, Camilla, additional, Ivarsson, Sten A., additional, Elding Larsson, Helena, additional, Samuelsson, Ulf, additional, Örtqvist, Eva, additional, Groop, Leif, additional, Ludvigsson, Johnny, additional, Marcus, Claude, additional, and Hattersley, Andrew T., additional

Published
2019
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