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2. The association of outdoor temperature and self-reported Raynaud's phenomenon severity among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study

Author

Fortuné, Catherine, Adams, Claire E., Henry, Richard S., El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofía, Shouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Alric, Laurent, André, Marc, Beaslay, Floryan, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Blaise, Sophie, Bories, Eva, Bruns, Alessandra, Cacciatore, Carlotta, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Deltombe, Thylbert, Denton, Christopher, Desroche, Tannvir, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gauzère, Loraine, Gerber, Anne, Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Geneviève, Hachulla, Erica, Hoa, Sabrina, Hughes, Michael, Ikic, Alena, Khalidi, Nader, Lakin, Kimberly, Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin Lopez, Maria, Martin, Thierry, Masetto, Ariel, Mekinian, Arsène, Melchor Díaz, Sheila, Mourguet, Morgane, Nikpour, Mandana, Olgane, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Rodríguez Almazar, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Varga, John, Wilcox, Pearce, Cañedo Ayala, Mara, Cook, Vanessa, Dal Santo, Cassidy, Dal Santo, Tiffany, D'Onofrio, Monica, Hu, Sophie, Neyer, Marieke Alexandra, Provencher, Sabrina, Virgili-Gervais, Gabrielle, Matthews, Bianca, Nassar, Elsa-Lynn, Carrier, Marie-Eve, Kwakkenbos, Linda, Pauling, John D, Bartlett, Susan J, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Hudson, Marie, Hummers, Laura K, Lawrie-Jones, Amanda, Malcarne, Vanessa L, Mayes, Maureen D, Richard, Michelle, Sauvé, Maureen, Wojeck, Robyn K, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D

Published
2024
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4. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Author

Adams, Claire E., Henry, Richard S., Fortuné, Catherine, Gottesman, Karen, Guillot, Geneviève, Hummers, Laura K., Lawrie-Jones, Amanda, Mayes, Maureen D., Richard, Michelle, Sauvé, Maureen, Assassi, Shervin, El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Gietzen, Amy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, André, Marc, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Ikic, Alena, Kafaja, Suzanne, Khalidi, Nader, Lakin, Kimberly, Lambert, Marc, Launay, David, Lee, Yvonne C., Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Lopez, Maria Martin, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Díaz, Sheila Melchor, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Almazar, Esther Rodríguez, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa-Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Wojeck, Robyn K., Knisely, Mitchell R., Bailey, Donald E., Somers, Tamara J., Kwakkenbos, Linda, Carrier, Marie-Eve, Nielson, Warren R., Bartlett, Susan J., Malcarne, Vanessa L., Hudson, Marie, Levis, Brooke, Benedetti, Andrea, Mouthon, Luc, Thombs, Brett D., and Silva, Susan G.

Published
2023
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5. Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10‐Item Connor‐Davidson Resilience Scale in Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie‐Eve, Kwakkenbos, Linda, Wojeck, Robyn K., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Worron‐Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Thombs, Brett D., Fortuné, Catherine, Hudson, Marie, Benedetti, Andrea, Hummers, Laura K., Adams, Claire Elizabeth, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa‐Lynn, Nordlund, Julia, Provencher, Sabrina, Assassi, Shervin, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Nielsen, Karen, Pope, Janet, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, André, Marc, Olagne, Louis, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Cacciatore, Carlotta, Crichi, Benjamin, Farge‐Bancel, Dominique, Carreira, Patricia, Fare, Regina, Lopez, Maria Martin, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Jones, Niall, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Smets, Perrine, Steen, Virginia, Sutton, Evelyn, and Thorne, Carter

Published
2023
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7. Evaluation of Measurement Properties and Differential Item Functioning in the English and French Versions of the University of California, Los Angeles, Loneliness Scale‐6: A Scleroderma Patient‐Centered Intervention Network (SPIN) Study

Author

S. Rapoport, Chelsea, Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie‐Eve, Henry, Richard S., Mouthon, Luc, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Sauvé, Maureen, Richard, Michelle, Welling, Joep, Varga, John, Adams, Claire E., Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Bartlett, Susan J., Hudson, Marie, Benedetti, Andrea, Gottesman, Karen, Hummers, Laura K., Lawrie‐Jones, Amanda, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., El‐Baalbaki, Ghassan, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Pope, Janet, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, Crichi, Benjamin, Farge‐Bancel, Dominique, André, Marc, Olagne, Louis, Smets, Perrine, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Fare, Regina, Martin, Maria, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Denton, Christopher, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Hoa, Sabrina, Jones, Niall, Kafaja, Suzanne, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, and Varga, John

Published
2023
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9. Transcriptional, epigenetic and metabolic signatures in cardiometabolic syndrome defined by extreme phenotypes

Author

Seyres, Denis, Cabassi, Alessandra, Lambourne, John J., Burden, Frances, Farrow, Samantha, McKinney, Harriet, Batista, Joana, Kempster, Carly, Pietzner, Maik, Slingsby, Oliver, Cao, Thong Huy, Quinn, Paulene A., Stefanucci, Luca, Sims, Matthew C., Rehnstrom, Karola, Adams, Claire L., Frary, Amy, Ergüener, Bekir, Kreuzhuber, Roman, Mocciaro, Gabriele, D’Amore, Simona, Koulman, Albert, Grassi, Luigi, Griffin, Julian L., Ng, Leong Loke, Park, Adrian, Savage, David B., Langenberg, Claudia, Bock, Christoph, Downes, Kate, Wareham, Nicholas J., Allison, Michael, Vacca, Michele, Kirk, Paul D. W., and Frontini, Mattia

Published
2022
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12. Older Adults' Perspectives on Voluntary Assisted Death: An In-Depth Qualitative Investigation in Australia.

Author

Gringart, Eyal, Adams, Claire, and Woodward, Faye

Subjects
*ASSISTED suicide laws, *ASSISTED suicide, *ATTITUDES toward death, *QUALITATIVE research, *CONTROL (Psychology), *INTERVIEWING, *MENTAL illness, *JUDGMENT sampling, *FUNCTIONAL status, *THEMATIC analysis, *RESEARCH methodology, *RELIGION, *PHENOMENOLOGY, *TERMINAL care, *OLD age
Abstract

Interest in voluntary assisted death (VAD) has been growing among researchers, policy makers and the public. This study aimed to explore older adults' perspectives on VAD in Australia. Using purposive sampling, 15 adults ≥65 years participated in in-depth semi-structured interviews. Interpretative phenomenological analysis identified four themes: cultural reflections; beliefs and worldviews; health aspects; and fabric of life. Participants expressed a desire to have control over end-of-life options, challenged by religious beliefs. Participants expressed concern that VAD legislation could leave people vulnerable to coercion and saw a need for safeguards. Reasons for and against supporting and utilising VAD were discussed. Physical illness was seen a more compelling reason for VAD than mental ill-health. Finally, connections to life and other were discussed, and being able to do the things one loved were named aspects of what it meant to live a good life. Implications are discussed along with future research directions. [ABSTRACT FROM AUTHOR]

Published
2024
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13. SaVanT: a web-based tool for the sample-level visualization of molecular signatures in gene expression profiles

Author

Lopez, David, Montoya, Dennis, Ambrose, Michael, Lam, Larry, Briscoe, Leah, Adams, Claire, Modlin, Robert L, and Pellegrini, Matteo

Subjects
Biological Sciences, Bioinformatics and Computational Biology, Genetics, Aetiology, 2.1 Biological and endogenous factors, Animals, Databases, Genetic, Gene Expression Profiling, Genetic Association Studies, Genomics, Humans, Organ Specificity, Phenotype, Software, Transcriptome, User-Computer Interface, Web Browser, Molecular signatures, Transcriptomic analysis, Tissue-specific expression, Heterogeneous samples, Visualization tools, Information and Computing Sciences, Medical and Health Sciences, Bioinformatics, Biological sciences, Biomedical and clinical sciences
Abstract

BackgroundMolecular signatures are collections of genes characteristic of a particular cell type, tissue, disease, or perturbation. Signatures can also be used to interpret expression profiles generated from heterogeneous samples. Large collections of gene signatures have been previously developed and catalogued in the MSigDB database. In addition, several consortia and large-scale projects have systematically profiled broad collections of purified primary cells, molecular perturbations of cell types, and tissues from specific diseases, and the specificity and breadth of these datasets can be leveraged to create additional molecular signatures. However, to date there are few tools that allow the visualization of individual signatures across large numbers of expression profiles. Signature visualization of individual samples allows, for example, the identification of patient subcategories a priori on the basis of well-defined molecular signatures.ResultHere, we generate and compile 10,985 signatures (636 newly-generated and 10,349 previously available from MSigDB) and provide a web-based Signature Visualization Tool (SaVanT; http://newpathways.mcdb.ucla.edu/savant ), to visualize these signatures in user-generated expression data. We show that using SaVanT, immune activation signatures can distinguish patients with different types of acute infections (influenza A and bacterial pneumonia). Furthermore, SaVanT is able to identify the prominent signatures within each patient group, and identify the primary cell types underlying different leukemias (acute myeloid and acute lymphoblastic) and skin disorders.ConclusionsThe development of SaVanT facilitates large-scale analysis of gene expression profiles on a patient-level basis to identify patient subphenotypes, or potential therapeutic target pathways.

Published
2017

16. Integrative genomic analysis implicates limited peripheral adipose storage capacity in the pathogenesis of human insulin resistance

Author

Lotta, Luca A, Gulati, Pawan, Day, Felix R, Payne, Felicity, Ongen, Halit, van de Bunt, Martijn, Gaulton, Kyle J, Eicher, John D, Sharp, Stephen J, Luan, Jian'an, De Lucia Rolfe, Emanuella, Stewart, Isobel D, Wheeler, Eleanor, Willems, Sara M, Adams, Claire, Yaghootkar, Hanieh, Forouhi, Nita G, Khaw, Kay-Tee, Johnson, Andrew D, Semple, Robert K, Frayling, Timothy, Perry, John RB, Dermitzakis, Emmanouil, McCarthy, Mark I, Barroso, Inês, Wareham, Nicholas J, Savage, David B, Langenberg, Claudia, O'Rahilly, Stephen, and Scott, Robert A

Subjects
Biochemistry and Cell Biology, Biological Sciences, Clinical Research, Human Genome, Genetics, Diabetes, Aetiology, 2.1 Biological and endogenous factors, Metabolic and endocrine, Adipose Tissue, Animals, Blood Glucose, Body Mass Index, Cardiovascular Diseases, Case-Control Studies, Disease Models, Animal, Female, Genome-Wide Association Study, Genomics, Humans, Insulin Resistance, Male, Metabolic Diseases, Mice, Obesity, Phenotype, EPIC-InterAct Consortium, Cambridge FPLD1 Consortium, Medical and Health Sciences, Developmental Biology, Agricultural biotechnology, Bioinformatics and computational biology
Abstract

Insulin resistance is a key mediator of obesity-related cardiometabolic disease, yet the mechanisms underlying this link remain obscure. Using an integrative genomic approach, we identify 53 genomic regions associated with insulin resistance phenotypes (higher fasting insulin levels adjusted for BMI, lower HDL cholesterol levels and higher triglyceride levels) and provide evidence that their link with higher cardiometabolic risk is underpinned by an association with lower adipose mass in peripheral compartments. Using these 53 loci, we show a polygenic contribution to familial partial lipodystrophy type 1, a severe form of insulin resistance, and highlight shared molecular mechanisms in common/mild and rare/severe insulin resistance. Population-level genetic analyses combined with experiments in cellular models implicate CCDC92, DNAH10 and L3MBTL3 as previously unrecognized molecules influencing adipocyte differentiation. Our findings support the notion that limited storage capacity of peripheral adipose tissue is an important etiological component in insulin-resistant cardiometabolic disease and highlight genes and mechanisms underpinning this link.

Published
2017

17. Topiramate Versus Naltrexone for Alcohol Use Disorder: A Genotype-Stratified Double-Blind Randomized Controlled Trial.

Author

Morley, Kirsten C., Kranzler, Henry R., Luquin, Natasha, Jamshidi, Nazila, Adams, Claire, Montebello, Mark, Tremonti, Chris, Dali, Gezelle, Logge, Warren, Baillie, Andrew, Teesson, Maree, Trent, Ronald, and Haber, Paul S.

Subjects
ALCOHOLISM, TOPIRAMATE, NALTREXONE, TREATMENT effectiveness, BODY mass index
Abstract

There have been no well-controlled and well-powered comparative trials of topiramate with other pharmacotherapies for alcohol use disorder (AUD), such as naltrexone. Moreover, the literature is mixed on the effects of two polymorphisms—rs2832407 (in GRIK1) and rs1799971 (in OPRM1)—on response to topiramate and naltrexone, respectively. The authors sought to examine the comparative effectiveness of topiramate and naltrexone in improving outcomes in AUD and to examine the role of the rs2832407 and rs1799971 polymorphisms, respectively, on response to these medications. In a 12-week, double-blind, placebo-controlled, randomized, multisite, genotype-stratified (rs2832407 and rs1799971) clinical trial comparing topiramate and naltrexone in treating AUD, 147 patients with AUD were randomly assigned to treatment with topiramate or naltrexone, stratified by genotype (rs2832407*CC and *AC/AA genotypes and rs1799971*AA and *AG/GG genotypes). The predefined primary outcome was number of heavy drinking days per week. Predefined secondary outcomes included standard drinks per drinking day per week, body mass index (BMI), craving, markers of liver injury, mood, and adverse events. For the number of heavy drinking days per week, there was a near-significant time-by-treatment interaction. For the number of standard drinks per drinking day per week, there was a significant time-by-treatment interaction, which favored topiramate. There were significant time-by-treatment effects, with greater reductions observed with topiramate than naltrexone for BMI, craving, and gamma-glutamyltransferase level. Withdrawal due to side effects occurred in 8% and 5% of the topiramate and naltrexone groups, respectively. Neither polymorphism showed an effect on treatment response. Topiramate is at least as effective and safe as the first-line medication, naltrexone, in reducing heavy alcohol consumption, and superior in reducing some clinical outcomes. Neither rs2832407 nor rs1799971 had effects on topiramate and naltrexone treatments, respectively. [ABSTRACT FROM AUTHOR]

Published
2024
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21. A low-fat diet improves fatigue in multiple sclerosis: Results from a randomized controlled trial

Author

Chase, Emma, primary, Chen, Vicky, additional, Martin, Kayla, additional, Lane, Michael, additional, Wooliscroft, Lindsey, additional, Adams, Claire, additional, Rice, Jessica, additional, Silbermann, Elizabeth, additional, Hollen, Christopher, additional, Fryman, Allison, additional, Purnell, Jonathan Q, additional, Vong, Carly, additional, Orban, Anna, additional, Horgan, Angela, additional, Khan, Akram, additional, Srikanth, Priya, additional, and Yadav, Vijayshree, additional

Published
2023
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22. Experiences of telehealth during and after the COVID-19 pandemic and preferences for future care of people with systemic sclerosis: a cross-sectional study

Author

Adams, Claire E., Gottesman, Karen, Hudson, Marie, Hummers, Laura K., Lawrie-Jones, Amanda, Malcarne, Vanessa L., Mayes, Maureen D., Richard, Michelle, Wojeck, Robyn K., El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Alric, Laurent, André, Marc, Beaslay, Floryan, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Blaise, Sophie, Bories, Eva, Bruns, Alessandra, Cacciatore, Carlotta, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Deltombe, Thylbert, Denton, Christopher, Desroche, Tannvir, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gauzère, Loraine, Gerber, Anne, Gordon, Jessica K., Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Geneviève, Hachulla, Eric, Hoa, Sabrina, Hughes, Michael, Ikic, Alena, Khalidi, Nader, Lakin, Kimberly S., Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin Lopez, Maria, Martin, Thierry, Masetto, Ariel, Mekinian, Arsène, Melchor Díaz, Sheila, Mourguet, Morgane, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Rodríguez Almazar, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert F., Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Wilcox, Pearce, Ayala, Mara Cañedo, Cook, Vanessa, Dal Santo, Cassidy, Dal Santo, Tiffany, D'onofrio, Monica, Neyer, Marieke Alexandra, Nassar, Elsa-Lynn, Virgili-Gervais, Gabrielle, Carrier, Marie-Eve, Kwakkenbos, Linda, Henry, Richard S, Hu, Sophie, Provencher, Sabrina, Golberg, Meira, Bartlett, Susan J, Mouthon, Luc, Patten, Scott B, Varga, John, Benedetti, Andrea, and Thombs, Brett D

Published
2024
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25. Barriers to mental health help-seeking among older adults with chronic diseases.

Author

Adams, Claire, Gringart, Eyal, and Strobel, Natalie

Subjects
*CHRONIC diseases & psychology, *HEALTH services accessibility, *CROSS-sectional method, *HEALTH literacy, *MENTAL health services, *MENTAL illness, *QUESTIONNAIRES, *HELP-seeking behavior, *ATTITUDES toward mental illness, *HEALTH behavior, *SOCIAL stigma, *OLD age
Abstract

Older adults often delay seeking professional help, particularly for mental health problems. This is of great concern for older adults with chronic diseases, who are at risk of mental health declines. This study explored barriers to help-seeking among older adults with chronic diseases and identified factors that influence older adults' perceptions of such barriers. This was a cross-sectional study with 106 adults ≥65 years, diagnosed with cardiovascular disease, respiratory disease, and/or type 2 diabetes. Demographic variables and barriers to help-seeking were measured using self-report questionnaires. The most common barriers to help-seeking were wondering whether the mental health problem is significant enough to warrant treatment (51.9%) and not having a regular primary health care provider to speak with (39.6%). Participants who had sought help in the past had less endorsement of these barriers than those who had never sought help. Many older adults with chronic diseases have difficulties knowing when to seek help, and apprehensions about disclosing mental health concerns. Integrated intervention is needed involving the community (e.g., reduce stigma), older adults with chronic diseases (e.g., increase mental health literacy), and physicians (e.g., increase training in ageing and mental health) to alleviate common barriers to help-seeking in this population. What is already known about this topic: Adults aged 65 years and older with chronic diseases are at risk of mental health problems. Many older adults do not seek mental health help or delay seeking help, thus mental health problems often go undiagnosed and untreated. Attitudes and beliefs towards help-seeking influence whether older adults are willing to engage mental health-related services. What this topic adds: The most common barriers to mental health help-seeking among older adults with chronic diseases are perceived need and fears around disclosing mental health concerns. Past use of mental health services, gender, marital status, number of chronic diseases, and quality of life influence perceived barriers to mental health help-seeking. Greater education for older adults and primary health care providers to increase mental health literacy and reduce stigma is likely to alleviate barriers to care and increase mental health help-seeking in this population. [ABSTRACT FROM AUTHOR]

Published
2024
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28. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Author

Wojeck, Robyn K., primary, Knisely, Mitchell R., additional, Bailey, Donald E., additional, Somers, Tamara J., additional, Kwakkenbos, Linda, additional, Carrier, Marie-Eve, additional, Nielson, Warren R., additional, Bartlett, Susan J., additional, Malcarne, Vanessa L., additional, Hudson, Marie, additional, Levis, Brooke, additional, Benedetti, Andrea, additional, Mouthon, Luc, additional, Thombs, Brett D., additional, Silva, Susan G., additional, Adams, Claire E., additional, Henry, Richard S., additional, Fortuné, Catherine, additional, Gottesman, Karen, additional, Guillot, Geneviève, additional, Hummers, Laura K., additional, Lawrie-Jones, Amanda, additional, Mayes, Maureen D., additional, Richard, Michelle, additional, Sauvé, Maureen, additional, Assassi, Shervin, additional, El-Baalbaki, Ghassan, additional, Fligelstone, Kim, additional, Frech, Tracy, additional, Gietzen, Amy, 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, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Abdallah, Nassim Ait, 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, Hoa, Sabrina, additional, Ikic, Alena, additional, Kafaja, Suzanne, additional, Khalidi, Nader, additional, Lakin, Kimberly, 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, Almazar, Esther Rodríguez, additional, Roux, Sophie, additional, Smets, Perrine, additional, Sobanski, Vincent, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Varga, John, additional, Wilcox, Pearce, additional, Ayala, Mara Cañedo, additional, Cook, Vanessa, additional, Hu, Sophie, additional, Matthews, Bianca, additional, Nassar, Elsa-Lynn, additional, Neyer, Marieke Alexandra, additional, Nordlund, Julia, additional, and Provencher, Sabrina, additional

Published
2023
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30. 2021 Virtual Theoretical Division Lightning Talk Series

Author

Ramsey, Marilyn, primary, Adams, Claire, additional, Archer, Emma, additional, Arzola Roig, Angelic, additional, Banerjee, Sneha, additional, Bellante, Armando, additional, Bhati, Manav, additional, Cengil, Muhammet, additional, Coker, Abigail, additional, Eidenbenz, Tayra, additional, Hehl, Rebecca, additional, Herndon, Liam, additional, Ikuyajolu, Olawale, additional, Kang, Shinwoo (Chris), additional, Khan, Noor, additional, Kolade, Beauty, additional, Kulchenko, Maksim, additional, Lalonde, Jessica, additional, Larocca, Martin, additional, Liu, Yanhua, additional, Miller, Brendan, additional, Montez, Christopher, additional, Mora Perez, Carlos, additional, Park, Ryan, additional, Parker, Quinn, additional, Pereiro, Felipe, additional, Perez, Kyle, additional, Petersen, Lillian, additional, Phillip, Aaron, additional, Roat, Gabriela, additional, Romero, Elena, additional, Sachdeva, Geeta, additional, Spurlock, Jacob, additional, Touil, Akram, additional, and Weight, Braden, additional

Published
2021
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31. Sensory Responsiveness in Siblings of Children with Autism Spectrum Disorders

Author

Hilton, Claudia L., Babb-Keeble, Alison, Westover, Erin Eitzmann, Zhang, Yi, Adams, Claire, Collins, Diane M., Karmarkar, Amol, Reistetter, Timothy A., and Constantino, John N.

Abstract

This study examined sensory responsiveness in unaffected siblings of children with autism spectrum disorder (ASD) and associations between sensory responsiveness and social severity. Sensory Profile Caregiver Questionnaires and Social Responsiveness Scales were completed by parents of 185 children between age 4 and 10.95 years. Significant differences were found between participants with ASD and controls, and between participants with ASD and unaffected siblings for all sensory quadrants and domains, but not between controls and unaffected siblings. Social responsiveness scores were significantly correlated with scores from most sensory profile categories. Sensory responsiveness as an endophenotype of ASD is not indicated from these findings; however, studies with larger numbers of unaffected siblings and controls are needed to confirm the null hypothesis.

Published
2016
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34. European lipodystrophy registry: background and structure

Author

von Schnurbein, Julia, Adams, Claire, Akinci, Baris, Ceccarini, Giovanni, D’Apice, Maria Rosaria, Gambineri, Alessandra, Hennekam, Raoul C. M., Jeru, Isabelle, Lattanzi, Giovanna, Miehle, Konstanze, Nagel, Gabriele, Novelli, Giuseppe, Santini, Ferruccio, Santos Silva, Ermelinda, Savage, David B., Sbraccia, Paolo, Schaaf, Jannik, Sorkina, Ekaterina, Tanteles, George, Vantyghem, Marie-Christine, Vatier, Camille, Vigouroux, Corinne, Vorona, Elena, Araújo-Vilar, David, and Wabitsch, Martin

Published
2020
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35. 'All we've ever known is Covid': A follow‐up study with newly qualified nurses who worked as student nurses during the pandemic.

Author

Godbold, Rosemary, Whiting, Lisa, Adams, Claire, and Chokeepermal‐Naidu, Yogini

Subjects
WELL-being, WORK experience (Employment), PROFESSIONAL employee training, RESEARCH methodology, INTERVIEWING, MENTAL health, VIDEOCONFERENCING, GRADUATES, NURSING practice, QUALITATIVE research, EXPERIENCE, EMPLOYMENT, NURSES, MEDICAL preceptorship, NURSING students, THEMATIC analysis, JUDGMENT sampling, COVID-19 pandemic
Abstract

Aims and Objectives: To explore the experiences of nursing students in England who had worked through the first wave and transitioned to qualification in the ongoing pandemic. Background: Experiences of health professionals and student nurses during the pandemic are now well documented, but the transition of students to qualification is less well understood. In Summer 2020, we interviewed 16 student nurses who had worked as health care assistants on paid extended placements as part of the COVID‐19 response in the East of England, finding surprisingly positive experiences, including perceived heightened preparedness for qualification. A year later, we re‐interviewed 12 participants from the original study to hear about transitioning to qualification during the ongoing pandemic. This study provides novel insights into their experiences. Design: A qualitative study design was used. Methods: Twelve newly qualified nurses who had participated in the original study took part in qualitative, online interviews where they shared their experiences of working and transitioning to qualification during the ongoing pandemic since we spoke to them a year earlier. The data was analysed using thematic analysis. COREQ guidelines were used in developing and reporting this study. Results: Three themes were identified. Constant change: in the clinical environment and arising out of the transition to newly qualified nurse, mental health and well‐being and reflecting on the past to learn for the future. Conclusions: Participants experienced a unique transition to qualification. The perceived heightened preparedness for qualification that participants who had worked as students during the first wave of the pandemic had become a reality, ameliorating some of the known effects of transition. However, increased expectations and added responsibilities in extremely busy, fluctuating clinical environments with minimal support add weight to calls for mandatory preceptorship programmes. While heightened resilience was evident, provision of ongoing mental health and well‐being support is strongly recommended. Relevance to Clinical Practice: We need a partnership approach with nurse educators and practice colleagues which ensures preparation for qualified practice is appropriate. If we do not effectively prepare students for qualified nurse posts, patient care will almost certainly be compromised. [ABSTRACT FROM AUTHOR]

Published
2024
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37. A randomized, controlled trial of low-fat diet for fatigue in multiple sclerosis (P6-3.008)

Author

Chen, Vicky, primary, Chase, Emma, additional, Lane, Michael, additional, Wooliscroft, Lindsey, additional, Adams, Claire, additional, Srikanth, Priya, additional, Silbermann, Elizabeth, additional, Rice, Jessica, additional, Hollen, Christopher, additional, Fryman, Allison, additional, Martin, Kayla, additional, Vong, Carly, additional, Orban, Anna, additional, Khan, Akram, additional, Horgan, Angela, additional, and Yadav, Vijayshree, additional

Published
2023
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41. Central markers of neuroinflammation in alcohol use disorder: A meta‐analysis of neuroimaging, cerebral spinal fluid, and postmortem studies

Author

Adams, Claire, primary, Perry, Nina, additional, Conigrave, James, additional, Hurzeler, Tristan, additional, Stevens, Julia, additional, Yacou Dunbar, Kristiane P., additional, Sweeney, Alicia, additional, Lee, Kylie, additional, Sutherland, Greg, additional, Haber, Paul, additional, and Morley, Kirsten C., additional

Published
2023
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42. Barriers to mental health help-seeking among older adults with chronic diseases

Author

Adams, Claire, Gringart, Eyal, Strobel, Natalie, Adams, Claire, Gringart, Eyal, and Strobel, Natalie

Abstract

Objective: Older adults often delay seeking professional help, particularly for mental health problems. This is of great concern for older adults with chronic diseases, who are at risk of mental health declines. This study explored barriers to help-seeking among older adults with chronic diseases and identified factors that influence older adults’ perceptions of such barriers. Method: This was a cross-sectional study with 106 adults ≥ 65 years, diagnosed with cardiovascular disease, respiratory disease, and/or type 2 diabetes. Demographic variables and barriers to help-seeking were measured using self-report questionnaires. Results: The most common barriers to help-seeking were wondering whether the mental health problem is significant enough to warrant treatment (51.9%) and not having a regular primary health care provider to speak with (39.6%). Participants who had sought help in the past had less endorsement of these barriers than those who had never sought help. Conclusions: Many older adults with chronic diseases have difficulties knowing when to seek help, and apprehensions about disclosing mental health concerns. Integrated intervention is needed involving the community (e.g., reduce stigma), older adults with chronic diseases (e.g., increase mental health literacy), and physicians (e.g., increase training in ageing and mental health) to alleviate common barriers to help-seeking in this population.

Published
2023

43. Enabling social care services for older adults during periods of long-term social isolation: Service provider perspectives

Author

Budrikis, Amy, Parry, Cate, Adams, Claire, Gringart, Eyal, Sim, Moira, McAullay, Daniel, Strobel, Natalie, Budrikis, Amy, Parry, Cate, Adams, Claire, Gringart, Eyal, Sim, Moira, McAullay, Daniel, and Strobel, Natalie

Abstract

Objective: To investigate how small, local organisations were impacted by and responded to COVID-19 in their delivery of social care services to older adults (70 years and older). Lessons learnt and future implications are discussed. Methods: Six representatives from four social care services (five females and one male) participated in individual semistructured interviews. Responses were analysed thematically. Results: The key themes identified were service providers' experience, perceived needs of older adults and adapting services. Service providers positioned themselves as front-line essential workers for their older adult clients, resulting in some emotional toll and distress for the service providers. They provided information, wellness checks and at-home assistance to keep their older adult clients connected. Conclusions: Service providers feel more prepared for future restrictions but flag the potential of training and supporting older adults to use technology to stay connected, as well as the need for more readily available funding to allow services to adapt quickly during times of crisis.

Published
2023

44. Theory-based behaviour change intervention to promote mental health help-seeking among older adults in Australia: Initial dissemination and acceptability

Author

Adams, Claire, Gringart, Eyal, Strobel, Natalie, Adams, Claire, Gringart, Eyal, and Strobel, Natalie

Abstract

Objective: Rates of help-seeking for mental health problems among older adults are low and initiatives to increase help-seeking in older populations are limited. To our knowledge, no interventions have aimed to promote help-seeking among older adults by tapping internal motivations to seek help. In this paper, we describe the development of a theory-based intervention designed to promote mental health help-seeking among older adults in Australia, using an internal motivation paradigm. Methods: The intervention was co-designed through a consultative process with nine key stakeholders who represented five main groups: primary health-care providers, mental health professionals, health-care executives, community organisations and consumers. Development was an iterative process, based on best practice guidelines. Nineteen older adults (≥65 years) provided feedback on the acceptability of the intervention. Results: The intervention consisted of a help-seeking brochure with behaviour change messages based on the Theory of Planned Behaviour (TPB). Messages targeted older adults' attitudes towards help-seeking, subjective norms, perceived behavioural control and barriers to seeking help. Most participants (74%) responded with agree/strongly agree to 10 items measuring the acceptability of the intervention, indicating the intervention is relevant, clear, appropriate and appealing. Conclusions: The present intervention appears to be an acceptable way to promote help-seeking for mental health problems among older adults. A larger, robust trial is warranted to determine the effectiveness of the intervention in improving help-seeking attitudes, intentions and behaviour. The intervention has the potential to increase older adults' engagement with mental health support and improve health outcomes in this population.

Published
2023

45. Die Angst vor einem Rezidiv : Interventionsmöglichkeiten für Breast Cancer Survivors

Author

Adams, Claire, Egger, Jessie, Adams, Claire, and Egger, Jessie

Abstract

Einleitung: Das Mammakarzinom stellt in der Schweiz die häufigste Krebsart beim weiblichen Geschlecht dar. Häufig verlaufen die Tumorbehandlungen kurativ, trotzdem kann dies eine grosse Belastung für die Personen, die den Krebs überlebt haben, darstellen und zu Angst vor einem Rezidiv führen. Fragestellung: Mit welchen Interventionen können Pflegefachpersonen im ambulanten Setting weibliche Brustkrebsüberlebende bei der Linderung der Angst vor einem Rezidiv unterstützen? Methode: Eine systematische Literaturrecherche wurde in den Datenbanken CINAHL Complete, PubMed und MEDLINE durchgeführt. Hierbei wurden insgesamt sieben Studien inkludiert, darunter vier rein quantitative, zwei Mixed-Methods und eine rein qualitative Studie. Diese wurden jeweils zusammengefasst und kritisch gewürdigt. Ergebnisse: In den sieben Hauptstudien wurden verschiedene Interventionen getestet, um die Angst vor einem Rezidiv bei weiblichen Brustkrebsüberlebenden zu reduzieren. Diese Studien beinhalten eine achtsamkeitsbasierte Onlineintervention, eine Akzeptanz- und Commitment-Therapie, eine Onlineintervention namens iConquerFear, eine Onlineintervention in Kombination mit kognitiver Verhaltenstherapie oder Telecoaching, ein achtsames Bewegungsprogramm, die Mini-AFTERc Intervention und die ConquerFear Intervention. Schlussfolgerung: Die sieben Hauptstudien liefern wichtige Erkenntnisse zur Behandlung und Messung von Fear of Cancer Recurrence. Wichtig ist, eine geeignete Intervention basierend auf dem individuellen Schweregrad von Fear of Cancer Recurrence anzubieten.

Published
2023

46. Effect of early childhood development interventions delivered by healthcare providers to improve cognitive outcomes in children at 0-36 months: A systematic review and meta-analysis

Author

Hirve, Raeena, Adams, Claire, Kelly, Clare B., McAullay, Daniel, Hurt, Lisa, Edmond, Karen M., Strobel, Natalie, Hirve, Raeena, Adams, Claire, Kelly, Clare B., McAullay, Daniel, Hurt, Lisa, Edmond, Karen M., and Strobel, Natalie

Abstract

Objective: To determine the effect of early childhood development interventions delivered by healthcare providers (HCP-ECD) on child cognition and maternal mental health. Design: Systematic review, meta-analysis. Setting: Healthcare setting or home. Participants: Infants under 1 month of age. Interventions: HCP-ECD interventions that supported responsive caregiving, early learning and motor stimulation. MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials, Health Technology Assessment Database, Database of Abstracts of Reviews of Effects and Cochrane Database of Systematic Reviews were searched until 15 November 2021. Studies reporting prespecified outcomes were pooled using standard meta-analytical methods. Main outcome measures: Cognitive development in children at 0-36 months. Results: Forty-two randomised controlled trials with 15 557 infants were included in the narrative synthesis. Twenty-seven trials were included in the meta-analyses. Pooled data from 13 trials suggest that HCP-ECD interventions may improve cognitive outcomes in children between 0 and 36 months (Bayley Scales of Infant Development version IIII (BSID-III) mean difference (MD) 2.65; 95 % CI 0.61 to 4.70; 2482 participants; low certainty of evidence). Pooled data from nine trials suggest improvements in motor development (BSID-III MD 4.01; 95 % CI 1.54 to 6.48; 1437 participants; low certainty of evidence). There was no evidence of improvement in maternal mental health (standardised MD -0.13; 95 % CI -0.28 to 0.03; 2806 participants; 11 trials; low certainty of evidence). Conclusions: We report promising evidence, particularly for cognitive and motor outcomes, of the effect of HCP-ECD interventions. However, effect sizes were small, and the certainty of evidence ranged from very low to moderate. Additional high-quality research is required. PROSPERO registration number: CRD42019122021.

Published
2023

49. Targeting MERTK on tumour cells and macrophages: a potential intervention for sporadic and NF2-related meningioma and schwannoma tumours

Author

Dave, Foram, Herrera, Kevin, Lockley, Alex, van de Weijer, Laurien L., Henderson, Summer, Sofela, Agbolahan A., Hook, Laura, Adams, Claire L., Ercolano, Emanuela, Hilton, David A., Maze, Emmanuel A., Kurian, Kathreena M., Ammoun, Sylwia, and Hanemann, C. Oliver

Abstract

Meningioma and schwannoma are common tumours of the nervous system. They occur sporadically or as part of the hereditary NF2-related schwannomatosis syndrome. There is an unmet need for new effective drug treatments for both tumour types. In this paper, we demonstrate overexpression/activation of TAM (TYRO3/AXL/MERTK) receptors (TAMs) and overexpression/release of ligand GAS6 in patient-derived meningioma tumour cells and tissue. For the first time, we reveal the formation of MERTK/TYRO3 heterocomplexes in meningioma and schwannoma tissue. We demonstrate the dependence of AXL and TYRO3 expression on MERTK in both tumour types, as well as interdependency of MERTK and AXL expression in meningioma. We show that MERTK and AXL contribute to increased proliferation and survival of meningioma and schwannoma cells, which we inhibited in vitro using the MERTK/FLT3 inhibitor UNC2025 and the AXL inhibitor BGB324. UNC2025 was effective in both tumour types with superior efficacy over BGB324. Finally, we found that TAMs are expressed by tumour-associated macrophages in meningioma and schwannoma tumours and that UNC2025 strongly depleted macrophages in both tumour types.

Published
2024
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50. Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10‐Item Connor‐DavidsonResilience Scale in Systemic Sclerosis: A Scleroderma Patient‐CenteredIntervention Network Cohort Study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie‐Eve, Kwakkenbos, Linda, Wojeck, Robyn K., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Worron‐Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Thombs, Brett D., Fortuné, Catherine, Hudson, Marie, Benedetti, Andrea, Hummers, Laura K., Adams, Claire Elizabeth, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa‐Lynn, Nordlund, Julia, Provencher, Sabrina, Assassi, Shervin, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Nielsen, Karen, Pope, Janet, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, André, Marc, Olagne, Louis, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Cacciatore, Carlotta, Crichi, Benjamin, Farge‐Bancel, Dominique, Carreira, Patricia, Fare, Regina, Lopez, Maria Martin, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Jones, Niall, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Smets, Perrine, Steen, Virginia, Sutton, Evelyn, and Thorne, Carter

Abstract

Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English‐ and French‐language versions of the 10‐item Connor‐Davidson Resilience Scale (CD‐RISC‐10) in SSc. Eligible participants were enrolled in the Scleroderma Patient‐centered Intervention Network Cohort and completed the CD‐RISC‐10 between August 2022 and January 2023. We used confirmatory factor analysis (CFA) to evaluate the CD‐RISC‐10 factor structure and conducted DIF analysis across languages with Multiple Indicators Multiple Causes models. We tested convergent validity with another measure of resilience and measures of self‐esteem and depression and anxiety symptoms. We assessed internal consistency and test–retest reliability using Cronbach's alpha and intraclass correlation coefficient (ICC). A total of 962 participants were included in this analysis. CFA supported a single‐factor structure (Tucker–Lewis index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.08 [90% confidence interval (90% CI) 0.07, 0.09]). We found no meaningful DIF. Internal consistency was high (α = 0.93 [95% CI 0.92, 0.94]), and we found that correlations with other measures of psychological functioning were moderate to large (|r| = 0.57–0.78) and confirmed study hypotheses. The scale showed good 1–2‐week test–retest reliability (ICC 0.80 [95% CI 0.75, 0.85]) in a subsample of 230 participants. The CD‐RISC‐10 is a valid and reliable measure of resilience in SSc, with score comparability across English and French versions.

Published
2023
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