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288 results on '"Ells, Carolyn"'

1. In tribute to Anne Donchin (1930–2014)

Author

Dodds, Susan, Ells, Carolyn, Garry, Ann, Holmes, Helen Bequaert, Purdy, Laura, Rawlinson, Mary C., Scully, Jackie Leach, and Tong, Rosemarie

Published
2015

8. SPIRIT-PRO Extension explanation and elaboration: guidelines for inclusion of patient-reported outcomes in protocols of clinical trials.

Author

Calvert, Melanie, King, Madeleine, Mercieca-Bebber, Rebecca, Aiyegbusi, Olalekan, Kyte, Derek, Slade, Anita, Chan, An-Wen, Basch, E, Bell, Jill, Bennett, Antonia, Bhatnagar, Vishal, Blazeby, Jane, Bottomley, Andrew, Brown, Julia, Brundage, Michael, Campbell, Lisa, Cappelleri, Joseph C, Draper, Heather, Dueck, Amylou C, Ells, Carolyn, Frank, Lori, Golub, Robert M, Griebsch, Ingolf, Haywood, Kirstie, Hunn, Amanda, King-Kallimanis, Bellinda, Martin, Laura, Mitchell, Sandra, Morel, Thomas, Nelson, Linda, Norquist, Josephine, O'Connor, Daniel, Palmer, Michael, Patrick, Donald, Price, Gary, Regnault, Antoine, Retzer, Ameeta, Revicki, Dennis, Scott, Jane, Stephens, Richard, Turner, Grace, Valakas, Antonia, Velikova, Galina, von Hildebrand, Maria, Walker, Anita, and Wenzel, Lari

Subjects
Humans, Research Design, Quality of Life, Checklist, Research Report, Patient Reported Outcome Measures, clinical trials, education & training, protocols & guidelines, statistics & research methods, Clinical Sciences, Public Health and Health Services, Other Medical and Health Sciences
Abstract

Patient-reported outcomes (PROs) are used in clinical trials to provide valuable evidence on the impact of disease and treatment on patients' symptoms, function and quality of life. High-quality PRO data from trials can inform shared decision-making, regulatory and economic analyses and health policy. Recent evidence suggests the PRO content of past trial protocols was often incomplete or unclear, leading to research waste. To address this issue, international, consensus-based, PRO-specific guidelines were developed: the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT)-PRO Extension. The SPIRIT-PRO Extension is a 16-item checklist which aims to improve the content and quality of aspects of clinical trial protocols relating to PRO data collection to minimise research waste, and ultimately better inform patient-centred care. This SPIRIT-PRO explanation and elaboration (E&E) paper provides information to promote understanding and facilitate uptake of the recommended checklist items, including a comprehensive protocol template. For each SPIRIT-PRO item, we provide a detailed description, one or more examples from existing trial protocols and supporting empirical evidence of the item's importance. We recommend this paper and protocol template be used alongside the SPIRIT 2013 and SPIRIT-PRO Extension paper to optimise the transparent development and review of trial protocols with PROs.

Published
2021

12. Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study

Author

Henry, Richard S., Gottesman, Karen, Hudson, Marie, Hummers, Laura K., Malcarne, Vanessa L., Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, El-Baalbaki, Ghassan, Ells, Carolyn, Fligelstone, Kim, Fortuné, Catherine, Frech, Tracy, Gietzen, Amy, Guillot, Geneviève, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Richard, Michelle, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Ait Abdallah, Nassim, Albert, Alexandra, André, Marc, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Crichi, Benjamin, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Gyger, Genevieve, Hachulla, Eric, Herrick, Ariane L, Hoa, Sabrina, Ikic, Alena, Jones, Niall, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin, Maria, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Bourgeault, Angelica, Cañedo Ayala, Mara, Carboni Jiménez, Andrea, Discepola, Marie-Nicole, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Lee, Yvonne C, Fox, Rina S, Kwakkenbos, Linda, Levis, Brooke, Carrier, Marie-Eve, Welling, Joep, Sauvé, Maureen, Mouthon, Luc, Benedetti, Andrea, Bartlett, Susan J, Varga, John, and Thombs, Brett D

Published
2021
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13. Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Wu, Yin, Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Negeri, Zelalem, Patten, Scott, Bartlett, Susan J., Mouthon, Luc, Varga, John, Benedetti, Andrea, and Thombs, Brett D.

Published
2021
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14. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Thombs, Brett D., Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Patten, Scott, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Bartlett, Susan J., Mouthon, Luc, Varga, John, and Benedetti, Andrea

Published
2020
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17. Protocol for a partially nested randomised controlled trial to evaluate the effectiveness of the scleroderma patient-centered intervention network COVID-19 home-isolation activities together (SPIN-CHAT) program to reduce anxiety among at-risk scleroderma patients

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Baron, Murray, Furst, Daniel E., Gottesman, Karen, Malcarne, Vanessa, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Riggs, Robert, Wigley, Fredrick, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Pope, Janet, Portales, Alexandra, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, André, Marc, Arsenault, Guylaine, Benzidia, Ilham, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Cohen, Pascal, Correia, Chase, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dubois, Sandrine, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gill, Anna, Gordon, Jessica, Granel-Rey, Brigitte, Gyger, Genevieve, Hachulla, Eric, Hatron, Pierre-Yves, Herrick, Ariane L., Hij, Adrian, Hoa, Sabrina, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Liang, Patrick, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin, Maria, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Smets, Perrine, Smith, Doug, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Stevens, Wendy, Sutton, Evelyn, Terrier, Benjamin, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Ostbo, Nora, Thombs, Brett D., Kwakkenbos, Linda, Carrier, Marie-Eve, Bourgeault, Angelica, Tao, Lydia, Harb, Sami, Gagarine, Maria, Rice, Danielle, Bustamante, Laura, Ellis, Kelsey, Duchek, Delaney, Wu, Yin, Bhandari, Parash Mani, Neupane, Dipika, Carboni-Jiménez, Andrea, Henry, Richard S., Krishnan, Ankur, Sun, Ying, Levis, Brooke, He, Chen, Turner, Kimberly A., Benedetti, Andrea, Culos-Reed, Nicole, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bartlett, Susan J., Dyas, Laura, and Patten, Scott

Published
2020
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20. Conduite avec facultes affaiblies apres la legalisation du cannabis a usage recreatif

Author

Windle, Sarah B., Sequeira, Crystal, Filion, Kristian B., Thombs, Brett D., Reynier, Pauline, Grad, Roland, Ells, Carolyn, and Eisenberg, Mark J.

Subjects
Marijuana, Drunk driving -- Laws, regulations and rules, Government regulation, Health
Abstract

<> C'est le message que le gouvernement canadien a envoye a tous les conducteurs apres la legalisation du cannabis a usage recreatif en octobre 2018. Toutefois, l'association entre l'utilisation legale [...]

Published
2021
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21. Communicating Qualitative Research Study Designs to Research Ethics Review Boards

Author

Ells, Carolyn

Abstract

Researchers using qualitative methodologies appear to be particularly prone to having their study designs called into question by research ethics or funding agency review committees. In this paper, the author considers the issue of communicating qualitative research study designs in the context of institutional research ethics review and offers suggestions for researchers to consider in their communication of study designs to research ethics review boards. General information about the mandate of research ethics review boards is provided. In light of wide international variability with respect to research ethics regulatory environments and review board processes, specific considerations and suggestions about communicating qualitative study designs effectively are presented within a Canadian case study example.

Published
2011

22. Impaired driving and legalization of recreational cannabis

Author

Windle, Sarah B., Sequeira, Crystal, Filion, Kristian B., Thombs, Brett D., Reynier, Pauline, Grad, Roland, Ells, Carolyn, and Eisenberg, Mark J.

Subjects
Legalization of narcotics -- Laws, regulations and rules -- Health aspects, Marijuana -- Laws, regulations and rules -- Health aspects, Traffic accidents -- Risk factors -- Health aspects, Drunk driving -- Health aspects -- Laws, regulations and rules, Government regulation, Health
Abstract

'Don't drive high.' This is the message that the government of Canada wanted all drivers to take to heart after the legalization of recreational cannabis in October 2018. However, the [...]

Published
2021
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24. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.

Author

Kwakkenbos, Linda, Jewett, Lisa R, Baron, Murray, Bartlett, Susan J, Furst, Dan, Gottesman, Karen, Khanna, Dinesh, Malcarne, Vanessa L, Mayes, Maureen D, Mouthon, Luc, Poiraudeau, Serge, Sauve, Maureen, Nielson, Warren R, Poole, Janet L, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia Hm, Hudson, Marie, Impens, Ann, Körner, Annett, Leite, Catarina, Costa Maia, Angela, Mendelson, Cindy, Pope, Janet, Steele, Russell J, Suarez-Almazor, Maria E, Ahmed, Sara, Coronado-Montoya, Stephanie, Delisle, Vanessa C, Gholizadeh, Shadi, Jang, Yeona, Levis, Brooke, Milette, Katherine, Mills, Sarah D, Razykov, Ilya, Fox, Rina S, and Thombs, Brett D

Subjects
Mental Health, Rehabilitation Medicine, Rheumatology, Statistics & Research Methods, Clinical Sciences, Public Health and Health Services, Other Medical and Health Sciences
Abstract

IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Published
2013

26. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort

Author

Baron, Murray, Bartlett, Susan J., Furst, Dan, Gottesman, Karen, van den Hoogen, Frank, Mouthon, Luc, Nielson, Warren R., Poiraudeau, Serge, Riggs, Robert, Sauve, Maureen, Wigley, Fredrick, Boutron, Isabelle, Costa Maia, Angela, El-Baalbaki, Ghassan, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Fortune, Catherine, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hudson, Marie, Impens, Ann, Jang, Yeona, Johnson, Sindhu R., Kennedy, Ann Tyrell, Khanna, Dinesh, Larche, Maggie, Leite, Catarina, Marra, Carlo, Nielsen, Karen, Poole, Janet L., Pope, Janet, Rodriguez Reyna, Tatiana Sofia, Schouffoer, Anne A., Steele, Russell J., Suarez-Almazor, Maria E., Welling, Joep, Wong-Rieger, Durhane, Albert, Alexandra, Arsenault, Guylaine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Chung, Lorinda, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dunne, James V., Fortin, Paul, Gill, Anna, Gordon, Jessica, Gyger, Genevieve, Herrick, Ariane L., Hinchcliff, Monique, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Korman, Benjamin, Liang, Patrick, Manning, Joanne, Masetto, Ariel, Robinson, David, Roux, Sophie, Schiopu, Elena, Smith, Doug, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Delisle, Vanessa C., Fedoruk, Claire, Levis, Brooke, Pepin, Mia R., Persmann, Jennifer, Jewett, Lisa R., Kwakkenbos, Linda, Carrier, Marie-Eve, Malcarne, Vanessa L., Harcourt, Diana, Rumsey, Nichola, Mayes, Maureen D., Assassi, Shervin, Körner, Annett, Fox, Rina S., Gholizadeh, Shadi, Mills, Sarah D., Portales, Alexandra, and Thombs, Brett D.

Published
2017
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28. Cannabis-Impaired driving: ethical considerations for the primary care practitioner.

Author

Huerne, Katherine, Ells, Carolyn, Grad, Roland, Filion, Kristian B., and Eisenberg, Mark J.

Subjects
MENTAL health services, PRIMARY care, PATIENT participation, TRAFFIC accidents, PATIENT-professional relations, NURSING diagnosis
Abstract

Background: Widespread cannabis consumption and recreational cannabis legalization is thought to have led to an increase in motor vehicle accidents, although there currently lacks ethical guidance for primary care practitioners on cannabis-impaired driving. Objective: The aim was to develop an ethical framework for primary care providers on cannabis-impaired driving. Methods: An ethical analysis in the form of a critical interpretive review was undertaken, using a systematic approach to determine the appropriate action to a given situation with evidence to substantiate its claims. The search strategy was designed to answer the research question: What are some ethical concerns for primary care providers to consider when cannabis-impaired driving is suspected? Four databases were searched in December 2021 using keywords related to cannabis, impaired driving, ethics, and primary care. The resulting evidence was synthesized as recommendations for primary care practice. Results: The ethical approach for primary care practitioners in addressing cannabis-impaired driving can be summarized as the duty to always inform, provide care through prevention and harm reduction strategies, and report when necessary. The prevention of cannabis-impaired driving should not fall on the sole responsibility of primary care practitioners. As this review offers a high-level discussion of the ethical considerations in cannabis-impaired driving, specific recommendations will depend upon the legal and policy designations of individual jurisdictions. Conclusion: Ultimately, the practitioner should manage cannabis-impaired driving in a way that fosters the therapeutic relationship in patient-centered care, through motivational discussions, collaboration with specialists, skills for self-management, patient empowerment, and support. Take-Home Points for Primary Care Practitioners in Cannabis-Impaired Driving • For patients who report driving frequently and using cannabis, the frequency of use, dosage, form of cannabis, tolerance levels, and withdrawal symptoms should be discussed, while informing the patient of the risks, harms, and legal consequences associated with cannabis-impaired driving. • The practitioner's primary responsibility in the cannabis-impaired driving context is to provide care to patients who drive and consume cannabis, which may include referring patients to mental health care to manage addictive or problematic behaviors associated with cannabis use. • Practitioners may have a duty to report cannabis-impaired driving to legal authorities (such as law enforcement) when the user engages in harmful behavior to themselves or others. [ABSTRACT FROM AUTHOR]

Published
2023
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30. A qualitative interview study exploring the psychological health impacts of the SPIN-CHAT program among people with systemic sclerosis at the onset of COVID-19: perceptions of trial participants and research team members

Author

Wurz, Amanda, primary, Duchek, Delaney, additional, Ellis, Kelsey, additional, Bansal, Mannat, additional, Carrier, Marie-Eve, additional, Tao, Lydia, additional, Dyas, Laura, additional, Kwakkenbos, Linda, additional, Levis, Brooke, additional, El-Baalbaki, Ghassan, additional, Rice, Danielle B., additional, Wu, Yin, additional, Henry, Richard S., additional, Bustamante, Laura, additional, Harb, Sami, additional, Hebblethwaite, Shannon, additional, Patten, Scott B., additional, Bartlett, Susan J., additional, Varga, John, additional, Mouthon, Luc, additional, Markham, Sarah, additional, Thombs, Brett D., additional, Culos-Reed, S. Nicole, additional, Fortuné, Catherine, additional, Gietzen, Amy, additional, Guillot, Geneviève, additional, Nielsen, Karen, additional, Lewis, Nancy, additional, Richard, Michelle, additional, Sauvé, Maureen, additional, Welling, Joep, additional, Battaglio, Lacey, additional, Burger, Tina, additional, Burleigh, Adrienne, additional, Collins, Peggy, additional, Davila, Jacob, additional, Inglese, Louise, additional, Kaplan, Franny, additional, Konrad, Violet, additional, Petrella, Silvia, additional, Potvin, Audrey, additional, Puccio, Natalie, additional, Gottesman, Karen, additional, Hudson, Marie, additional, Hummers, Laura K., additional, Lawrie-Jones, Amanda, additional, Malcarne, Vanessa L., additional, Mayes, Maureen D., additional, Nielson, Warren R., additional, Assassi, Shervin, additional, Ells, Carolyn, additional, Fligelstone, Kim, additional, Frech, Tracy, additional, Harel, Daphna, additional, Hinchcliff, Monique, additional, Johnson, Sindhu R., additional, Larche, Maggie, additional, Leite, Catarina, additional, Nguyen, Christelle, additional, Pope, Janet, additional, Rannou, François, additional, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Ait Abdallah, Nassim, additional, André, Marc, additional, Bernstein, Elana J., additional, Berthier, Sabine, additional, Bissonnette, Lyne, additional, Bruns, Alessandra, additional, Carreira, Patricia, additional, Casadevall, Marion, additional, Chaigne, Benjamin, additional, Chung, Lorinda, additional, Crichi, Benjamin, additional, Denton, Christopher, additional, Domsic, Robyn, additional, Dunne, James V., additional, Dunogue, Bertrand, additional, Fare, Regina, additional, Farge-Bancel, Dominique, additional, Fortin, Paul R., additional, Gordon, Jessica, additional, Granel-Rey, Brigitte, additional, Guffroy, Aurélien, additional, Gyger, Genevieve, additional, Hachulla, Eric, additional, Herrick, Ariane L., additional, Hoa, Sabrina, additional, Ikic, Alena, additional, Jones, Niall, additional, Khalidi, Nader, additional, Lambert, Marc, additional, Launay, David, additional, Lee, Yvonne C., additional, Maillard, Hélène, additional, Maltez, Nancy, additional, Manning, Joanne, additional, Marie, Isabelle, additional, Lopez, Maria Martin, additional, Martin, Thierry, additional, Masetto, Ariel, additional, Maurier, François, additional, Mekinian, Arsene, additional, Díaz, Sheila Melchor, additional, Nikpour, Mandana, additional, Olagne, Louis, additional, Poindron, Vincent, additional, Proudman, Susanna, additional, Régent, Alexis, additional, Rivière, Sébastien, additional, Robinson, David, additional, Rodríguez Almazar, Esther, additional, Roux, Sophie, additional, Smets, Perrine, additional, Sobanski, Vincent, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Wilcox, Pearce, additional, Ayala, Mara Cañedo, additional, Discepola, Marie-Nicole, additional, Montemurro, Laury, additional, Nassar, Elsa Lynn, additional, Neyer, Marieke Alexandra, additional, Nordlund, Julia, additional, Østbø, Nora, additional, and Provencher, Sabrina, additional

Published
2023
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34. Guidelines for Inclusion of Patient-Reported Outcomes in Clinical Trial Protocols: The SPIRIT-PRO Extension

Author

Calvert, Melanie, Kyte, Derek, Mercieca-Bebber, Rebecca, Slade, Anita, Chan, An-Wen, King, Madeleine T., Hunn, Amanda, Bottomley, Andrew, Regnault, Antoine, Chan, An-Wen, Ells, Carolyn, O’Connor, Daniel, Revicki, Dennis, Patrick, Donald, Altman, Doug, Basch, Ethan, Velikova, Galina, Price, Gary, Draper, Heather, Blazeby, Jane, Scott, Jane, Coast, Joanna, Norquist, Josephine, Brown, Julia, Haywood, Kirstie, Johnson, Laura Lee, Campbell, Lisa, Frank, Lori, von Hildebrand, Maria, Brundage, Michael, Palmer, Michael, Kluetz, Paul, Stephens, Richard, Golub, Robert M., Mitchell, Sandra, and Groves, Trish

Published
2018
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36. Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research

Author

Cruz Rivera, Samantha, primary, Aiyegbusi, Olalekan Lee, additional, Ives, Jonathan, additional, Draper, Heather, additional, Mercieca-Bebber, Rebecca, additional, Ells, Carolyn, additional, Hunn, Amanda, additional, Scott, Jane A., additional, Fernandez, Conrad V., additional, Dickens, Andrew P., additional, Anderson, Nicola, additional, Bhatnagar, Vishal, additional, Bottomley, Andrew, additional, Campbell, Lisa, additional, Collett, Clive, additional, Collis, Philip, additional, Craig, Kathrine, additional, Davies, Hugh, additional, Golub, Robert, additional, Gosden, Lesley, additional, Gnanasakthy, Ari, additional, Haf Davies, Elin, additional, von Hildebrand, Maria, additional, Lord, Janet M., additional, Mahendraratnam, Nirosha, additional, Miyaji, Tempei, additional, Morel, Thomas, additional, Monteiro, Joao, additional, Zwisler, Ann-Dorthe Olsen, additional, Peipert, John Devin, additional, Roydhouse, Jessica, additional, Stover, Angela M., additional, Wilson, Roger, additional, Yap, Christina, additional, and Calvert, Melanie J., additional

Published
2022
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37. Adults with Intellectual and Developmental Disabilities and Participation in Decision Making: Ethical Considerations for Professional-Client Practice

Author

Lotan, Gurit and Ells, Carolyn

Abstract

In this article, the authors challenge professionals to re-examine assumptions about basic concepts and their implications in supporting adults with intellectual and developmental disabilities. The authors focus on decisions with significant implications, such as planning transition from school to adult life, changing living environments, and managing health issues. The analysis highlights important concepts that are less often addressed: autonomy, empowerment, participation in decision making, asymmetrical power, outer-directedness, and respect for persons. The authors suggest that professionals adopt a moral principle of respect for persons as an overarching guiding principle in their work with adults with intellectual and developmental disabilities. The value of self-determination and person-centered planning processes are placed in the larger scope of ethical practice. The authors offer a set of practical considerations that encourage respect for these individuals by involving them in the decision-making process in situations that have a large impact on them.

Published
2010
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41. “Who needs an app? Fertility patients’ use of a novel mobile health app”

Author

Miner, Skye A, primary, Gelgoot, Eden N, additional, Lahuec, Alix, additional, Wunderlich, Samantha, additional, Safo, Darryl, additional, Brochu, Felicia, additional, Dawadi, Shrinkhala, additional, Robins, Stephanie, additional, Bernadette, Siobhan, additional, O’Connell, Laura, additional, Chan, Peter, additional, Ells, Carolyn, additional, Holzer, Hananel, additional, Lo, Kirk, additional, Mahutte, Neal, additional, Ouhilal, Sophia, additional, Rosberger, Zeev, additional, Tulandi, Togas, additional, and Zelkowitz, Phyllis, additional

Published
2022
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42. Pain levels and associated factors in the Scleroderma Patient-centered Intervention Network (SPIN) cohort: a multicentre cross-sectional study

Author

Lee, Yvonne C, primary, Fox, Rina S, additional, Kwakkenbos, Linda, additional, Levis, Brooke, additional, Carrier, Marie-Eve, additional, Welling, Joep, additional, Sauvé, Maureen, additional, Mouthon, Luc, additional, Benedetti, Andrea, additional, Bartlett, Susan J, additional, Varga, John, additional, Thombs, Brett D, additional, Henry, Richard S., additional, Gottesman, Karen, additional, Hudson, Marie, additional, Hummers, Laura K., additional, Malcarne, Vanessa L., additional, Mayes, Maureen D., additional, Nielson, Warren R., additional, Riggs, Robert, additional, Assassi, Shervin, additional, El-Baalbaki, Ghassan, additional, Ells, Carolyn, additional, Fligelstone, Kim, additional, Fortuné, Catherine, additional, Frech, Tracy, additional, Gietzen, Amy, additional, Guillot, Geneviève, additional, Harel, Daphna, additional, Hinchcliff, Monique, additional, Johnson, Sindhu R., additional, Larche, Maggie, additional, Leite, Catarina, additional, Nguyen, Christelle, additional, Nielsen, Karen, additional, Pope, Janet, additional, Rannou, François, additional, Richard, Michelle, additional, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Ait Abdallah, Nassim, additional, Albert, Alexandra, additional, André, Marc, additional, Bernstein, Elana J., additional, Berthier, Sabine, additional, Bissonnette, Lyne, additional, Bruns, Alessandra, additional, Carreira, Patricia, additional, Casadevall, Marion, additional, Chaigne, Benjamin, additional, Chung, Lorinda, additional, Correia, Chase, additional, Crichi, Benjamin, additional, Denton, Christopher, additional, Domsic, Robyn, additional, Dunne, James V., additional, Dunogue, Bertrand, additional, Fare, Regina, additional, Farge-Bancel, Dominique, additional, Fortin, Paul R., additional, Gordon, Jessica, additional, Granel-Rey, Brigitte, additional, Gyger, Genevieve, additional, Hachulla, Eric, additional, Herrick, Ariane L, additional, Hoa, Sabrina, additional, Ikic, Alena, additional, Jones, Niall, additional, Kafaja, Suzanne, additional, Khalidi, Nader, additional, Lambert, Marc, additional, Launay, David, additional, Maillard, Hélène, additional, Maltez, Nancy, additional, Manning, Joanne, additional, Marie, Isabelle, additional, Martin, Maria, additional, Martin, Thierry, additional, Masetto, Ariel, additional, Maurier, François, additional, Mekinian, Arsene, additional, Melchor, Sheila, additional, Nikpour, Mandana, additional, Olagne, Louis, additional, Poindron, Vincent, additional, Proudman, Susanna, additional, Régent, Alexis, additional, Rivière, Sébastien, additional, Robinson, David, additional, Rodriguez, Esther, additional, Roux, Sophie, additional, Smets, Perrine, additional, Sobanski, Vincent, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Wilcox, Pearce, additional, Bourgeault, Angelica, additional, Cañedo Ayala, Mara, additional, Carboni Jiménez, Andrea, additional, Discepola, Marie-Nicole, additional, Gagarine, Maria, additional, Nordlund, Julia, additional, and Østbø, Nora, additional

Published
2021
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