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Research Papers

Validation of the patient activation measure in a multiple sclerosis clinic sample and implications for care

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Pages 1558-1567 | Accepted 01 Dec 2009, Published online: 01 Jul 2010

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Maíra Mendes dos Santos, Ana Carolina Bertoletti De Marchi, Elisa Brosina de Leon & Licinio Gomes Roque. (2023) Health behaviour change and activation in e-health weight loss intervention for elderly: a randomised clinical trial. Behaviour & Information Technology 0:0, pages 1-16.
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Emma Barnard, Chelsea R. Brown, Tracey J. Weiland, George A. Jelinek & Claudia H. Marck. (2020) Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis. Disability and Rehabilitation 42:6, pages 822-832.
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Bella Etingen, Scott Miskevics, Alex Malhiot & Sherri L. LaVela. (2020) Patient Engagement in VA Health Care: Does Gender Play a Role?. Defence and Peace Economics 31:1, pages 24-33.
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Bi Xia Ngooi, Tanya L. Packer, Grace Warner, George Kephart, Karen Wei Ling Koh, Raymond Ching Chiew Wong & Serene Peiying Lim. (2018) How adults with cardiac conditions in Singapore understand the Patient Activation Measure (PAM-13) items: a cognitive interviewing study. Disability and Rehabilitation 40:5, pages 587-596.
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Paula Kersten, Kathryn M. McPherson, Nicola M. Kayes, Alice Theadom & Alana McCambridge. (2015) Bridging the goal intention–action gap in rehabilitation: a study of if-then implementation intentions in neurorehabilitation. Disability and Rehabilitation 37:12, pages 1073-1081.
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Articles from other publishers (69)

Alex W.K. Wong, Rachel Tomazin, Kim Walker, Rachel Heeb Desai, Holly Hollingsworth, Pamela K. Newland & Kerri A. Morgan. (2023) Text messaging intervention for fatigue self-management in people with stroke, spinal cord injury, and multiple sclerosis: A pilot study. Disability and Health Journal, pages 101549.
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Chin-Yen Lin, Misook L. Chung, Donna L. Schuman, Martha J. Biddle, Gia Mudd-Martin, Jennifer L. Miller, Muna Hammash, Mary P. Schooler, Mary Kay Rayens, Frances J. Feltner & Debra K. Moser. (2023) Psychometric Properties of the Patient Activation Measure in Family Caregivers of Patients With Chronic Illnesses. Nursing Research 72:4, pages 292-300.
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Tom J Crijns, Paxton Segina, Joost T P Kortlever, Jacob E Thomas, David Ring, Lee Reichel, Gregg Vagner & Sina Ramtin. (2023) Moderators and Mediators of the Relationship of Shared Decision-Making and Satisfaction. Journal of Patient Experience 10, pages 237437352311715.
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Zsombor Zrubka, Péter Vékás, Péter Németh, Ágota Dobos, Ottó Hajdu, Levente Kovács, László Gulácsi, Judith Hibbard & Márta Péntek. (2022) Validation of the PAM-13 instrument in the Hungarian general population 40 years old and above. The European Journal of Health Economics 23:8, pages 1341-1355.
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Marina Gonzalez-del-Rio, Carme Bertran-Noguer, Lluís Ramió-Torrentà & Edurne Zabaleta-del-Olmo. (2022) Multiple sclerosis disease–related knowledge measurement instruments show mixed performance: a systematic review. Journal of Clinical Epidemiology 149, pages 60-82.
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Winnie Magadi, Courtney J. Lightfoot, Katherine E. Memory, Shalini Santhakumaran, Sabine N. van der Veer, Nicola Thomas, Rachel Gair & Alice C. Smith. (2022) Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England. BMC Nephrology 23:1.
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Wael F Hussein, Paul N Bennett, Sumi J Sun, Marc Reiterman, Emily Watson, Ian M Farwell & Brigitte Schiller. (2022) Patient Activation Among Prevalent Hemodialysis Patients: An Observational Cross-Sectional Study. Journal of Patient Experience 9, pages 237437352211122.
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Ada E.M. Bloem, Rémy L.M. Mostard, Naomi Stoot, Jan W.H. Custers, Martijn Vooijs, Daisy J.A. Janssen, Alex J. van ‘t Hul & Martijn A. Spruit. (2022) Patient Activation for Self-Management in Patients with Idiopathic Pulmonary Fibrosis or Sarcoidosis. Respiration 101:1, pages 76-83.
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Astrid Lindman, Charlotte Handberg, Gitte Olesen & Saskia Duijts. (2021) Health‐related quality of life and physical functioning in patients participating in a rehabilitation programme, undergoing non‐myeloablative allogeneic haematopoietic stem cell transplantation: Outcomes from a single arm longitudinal study. European Journal of Cancer Care 30:6.
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Courtney J. Lightfoot, Thomas J. Wilkinson, Katherine E. Memory, Jared Palmer & Alice C. Smith. (2021) Reliability and Validity of the Patient Activation Measure in Kidney Disease: Results of Rasch Analysis. Clinical Journal of the American Society of Nephrology 16:6, pages 880-888.
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Anne Christin Rahn, Lisa Wenzel, Andrea Icks, Alexander Stahmann, Jutta Scheiderbauer, Kristina Grentzenberg, Markus Vomhof, Joseph Montalbo, Tim Friede, Christoph Heesen & Sascha Köpke. (2021) Development and evaluation of an interactive web-based decision-making programme on relapse management for people with multiple sclerosis (POWER@MS2)—study protocol for a randomised controlled trial. Trials 22:1.
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Pamela Newland, Rebecca Lorenz & Brant J Oliver. (2020) Patient activation in adults with chronic conditions: A systematic review. Journal of Health Psychology 26:1, pages 103-114.
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J. P. Eyles, M. Ferreira, K. Mills, B. R. Lucas, S. R. Robbins, M. Williams, H. Lee, S. Appleton & D. J. Hunter. (2020) Is the Patient Activation Measure a valid measure of osteoarthritis self-management attitudes and capabilities? Results of a Rasch analysis. Health and Quality of Life Outcomes 18:1.
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David Daniel Wilkie, Alessandra Solari & Richard St. John Nicholas. (2020) The impact of the face-to-face consultation on decisional conflict in complex decision-making in multiple sclerosis: A pilot study. Multiple Sclerosis Journal - Experimental, Translational and Clinical 6:4, pages 205521732095980.
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Clayon B. Hamilton & Linda C. Li. (2020) Measures of Patient Activation and Self‐Efficacy. Arthritis Care & Research 72:S10, pages 645-659.
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Matthew Plow, Tanya Packer, Virgil G. Mathiowetz, Kathy Preissner, Setareh Ghahari, Abdus Sattar, Francois Bethoux & Marcia Finlayson. (2020) REFRESH protocol: a non-inferiority randomised clinical trial comparing internet and teleconference to in-person ‘Managing Fatigue’ interventions on the impact of fatigue among persons with multiple sclerosis. BMJ Open 10:8, pages e035470.
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Lilian Bravo, Mary K. Killela, Beck L. Reyes, Karla Marie Bathan Santos, Vanessa Torres, Chai-Chih Huang & Eufemia Jacob. (2020) Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity. Journal of Pediatric Health Care 34:4, pages 304-314.
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Kimberley Allen-Philbey, Rod Middleton, Katie Tuite-Dalton, Elaine Baker, Andrea Stennett, Christo Albor & Klaus Schmierer. (2020) Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?. Frontiers in Neurology 11.
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Sarah Allen, Simon N. Rogers & Rebecca V. Harris. (2019) Socio‐economic differences in patient participation behaviours in doctor–patient interactions—A systematic mapping review of the literature. Health Expectations 22:5, pages 1173-1184.
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Edward L Barnes, Millie D Long, Michael D Kappelman, Christopher F Martin & Robert S Sandler. (2019) High Patient Activation Is Associated With Remission in Patients With Inflammatory Bowel Disease. Inflammatory Bowel Diseases 25:7, pages 1248-1254.
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Dorothy Kessler, Jennifer Hauteclocque, David Grimes, Tiago Mestre, Diane Côtéd & Clare Liddy. (2019) Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease. Quality of Life Research 28:5, pages 1355-1364.
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Cristiane Martins Cunha, Débora Cristine Prévide Teixeira da Cunha, Rafaela de Oliveira Manzato, Eliane Nepomuceno, Dirceu da Silva & Rosana Aparecida Spadoti Dantas. (2019) Validation of the Brazilian Version of the Patient Activation Measure 13. Journal of Nursing Measurement 27:1, pages 97-113.
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Jane McCusker, Sylvie D. Lambert, Jeannie Haggerty, Mark J Yaffe, Eric Belzile & Antonio Ciampi. (2019) Self-management support in primary care is associated with improvement in patient activation. Patient Education and Counseling 102:3, pages 571-577.
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Tracey J. Weiland, Alysha M. De Livera, Chelsea R. Brown, George A. Jelinek, Zoe Aitken, Steve L. SimpsonJrJr, Sandra L. Neate, Keryn L. Taylor, Emily O'Kearney, William Bevens & Claudia H. Marck. (2018) Health Outcomes and Lifestyle in a Sample of People With Multiple Sclerosis (HOLISM): Longitudinal and Validation Cohorts. Frontiers in Neurology 9.
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Robert G. Nelson, V. Shane Pankratz, Donica M. Ghahate, Jeanette Bobelu, Thomas Faber & Vallabh O. Shah. (2018) Home-Based Kidney Care, Patient Activation, and Risk Factors for CKD Progression in Zuni Indians. Clinical Journal of the American Society of Nephrology 13:12, pages 1801-1809.
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Revital Azulay, Liora Valinsky, Fabienne Hershkowitz & Racheli Magnezi. (2018) Is the patient activation measure associated with adherence to colonoscopy after a positive fecal occult blood test result?. Israel Journal of Health Policy Research 7:1.
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Anouk Overbeek, Judith A. C. Rietjens, Lea J. Jabbarian, Johan Severijnen, Siebe J. Swart, Agnes van der Heide & Ida J. Korfage. (2018) Low patient activation levels in frail older adults: a cross-sectional study. BMC Geriatrics 18:1.
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Lori A. Bilello, Allyson Hall, Jeffrey Harman, Christopher Scuderi, Nipa Shah, Jon C. Mills & Shenae Samuels. (2018) Key attributes of patient centered medical homes associated with patient activation of diabetes patients. BMC Family Practice 19:1.
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Jackie Sturt, Thandiwe Rebecca Dliwayo, Vera Forjaz, Kathryn Hamilton, Carol Bryce, Joseph Fraser & Frances Griffiths. (2018) Eliciting the Impact of Digital Consulting for Young People Living With Long-Term Conditions (LYNC Study): Cognitive Interviews to Assess the Face and Content Validity of Two Patient-Reported Outcome Measures. Journal of Medical Internet Research 20:10, pages e268.
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Cristiane Martins Cunha, Eliane Nepomuceno, Rafaela de Oliveira Manzato, Débora Cristine Prévide Teixeira da Cunha, Dirceu da Silva & Rosana Aparecida Spadoti Dantas. (2018) Cultural adaptation and validation of the Brazilian Version of the Patient Activation Measure-22 items. Revista Brasileira de Enfermagem 71:4, pages 1891-1898.
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Marcia A. Potter & Candy Wilson. (2017) Applying Bureaucratic Caring Theory and the Chronic Care Model to Improve Staff and Patient Self-Efficacy. Nursing Administration Quarterly 41:4, pages 310-320.
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Guendalina Graffigna. (2017) Is a Transdisciplinary Theory of Engagement in Organized Settings Possible? A Concept Analysis of the Literature on Employee Engagement, Consumer Engagement and Patient Engagement. Frontiers in Psychology 8.
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Lani Zimmerman, Fernando A. Wilson, Myra S. Schmaderer, Leeza Struwe, Bunny Pozehl, Audrey Paulman, Lisa C. Bratzke, Kim Moore, Libby Raetz & Barb George. (2016) Cost-Effectiveness of a Care Transition Intervention Among Multimorbid Patients. Western Journal of Nursing Research 39:5, pages 622-642.
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Bi Xia Ngooi, Tanya L. Packer, George Kephart, Grace Warner, Karen Wei Ling Koh, Raymond Ching Chiew Wong & Serene Peiying Lim. (2016) Validation of the Patient Activation Measure (PAM-13) among adults with cardiac conditions in Singapore. Quality of Life Research 26:4, pages 1071-1080.
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J Campbell, W Rashid, M Cercignani & D Langdon. (2017) Cognitive impairment among patients with multiple sclerosis: associations with employment and quality of life. Postgraduate Medical Journal 93:1097, pages 143-147.
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Elena Titova, Øyvind Salvesen, Signe Berit Bentsen, Synnøve Sunde, Sigurd Steinshamn & Anne Hildur Henriksen. (2017) Does an Integrated Care Intervention for COPD Patients Have Long-Term Effects on Quality of Life and Patient Activation? A Prospective, Open, Controlled Single-Center Intervention Study. PLOS ONE 12:1, pages e0167887.
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Jane McCusker, Sylvie D. Lambert, Martin G. Cole, Antonio Ciampi, Erin Strumpf, Ellen E. Freeman & Eric Belzile. (2016) Activation and Self-Efficacy in a Randomized Trial of a Depression Self-Care Intervention. Health Education & Behavior 43:6, pages 716-725.
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Jennifer E. Prey, Min Qian, Susan Restaino, Judith Hibbard, Suzanne Bakken, Rebecca Schnall, Gloria Rothenberg, David K. Vawdrey & Ruth Masterson Creber. (2016) Reliability and validity of the patient activation measure in hospitalized patients. Patient Education and Counseling 99:12, pages 2026-2033.
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Myra S. Schmaderer, Lani Zimmerman, Melody Hertzog, Bunny Pozehl & Audrey Paulman. (2016) Correlates of Patient Activation and Acute Care Utilization Among Multimorbid Patients. Western Journal of Nursing Research 38:10, pages 1335-1353.
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Lufei Young, Susan Barnason & Kevin Kupzyk. (2016) Mechanism of engaging self-management behavior in rural heart failure patients. Applied Nursing Research 30, pages 222-227.
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Eindra Aung, Maria Donald, Joseph R. Coll, Gail M. Williams & Suhail A. R. Doi. (2016) Association between patient activation and patient-assessed quality of care in type 2 diabetes: results of a longitudinal study. Health Expectations 19:2, pages 356-366.
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H.A. Crawford, B. Barton, M.J. Wilson, Y. Berman, V.J. McKelvey-Martin, P.J. Morrison & K.N. North. (2016) Uptake of health monitoring and disease self-management in Australian adults with neurofibromatosis type 1: strategies to improve care. Clinical Genetics 89:3, pages 385-391.
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Ruth Masterson Creber, Jennifer Prey, Beatriz Ryan, Irma Alarcon, Min Qian, Suzanne Bakken, Steven Feiner, George Hripcsak, Fernanda Polubriaginof, Susan Restaino, Rebecca Schnall, Philip Strong & David Vawdrey. (2016) Engaging hospitalized patients in clinical care: Study protocol for a pragmatic randomized controlled trial. Contemporary Clinical Trials 47, pages 165-171.
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Marie-Christine R Goodworth, Lara Stepleman, Judith Hibbard, Lisa Johns, Dustin Wright, Mary D Hughes & Mitzi J Williams. (2014) Variables associated with patient activation in persons with multiple sclerosis. Journal of Health Psychology 21:1, pages 82-92.
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J. Campbell, D. Langdon, M. Cercignani & W. Rashid. (2016) A Randomised Controlled Trial of Efficacy of Cognitive Rehabilitation in Multiple Sclerosis: A Cognitive, Behavioural, and MRI Study. Neural Plasticity 2016, pages 1-9.
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Guendalina Graffigna, Serena Barello, Andrea Bonanomi, Edoardo Lozza & Judith Hibbard. (2015) Measuring patient activation in Italy: Translation, adaptation and validation of the Italian version of the patient activation measure 13 (PAM13-I). BMC Medical Informatics and Decision Making 15:1.
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Shawn L. Shah & Corey A. Siegel. (2015) Increasing Patient Activation Could Improve Outcomes for Patients with Inflammatory Bowel Disease. Inflammatory Bowel Diseases 21:12, pages 2975-2978.
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Inger Elise O. Moljord, Mariela L. Lara-Cabrera, Lilisbeth Perestelo-Pérez, Amado Rivero-Santana, Lasse Eriksen & Olav M. Linaker. (2015) Psychometric properties of the Patient Activation Measure-13 among out-patients waiting for mental health treatment: A validation study in Norway. Patient Education and Counseling 98:11, pages 1410-1417.
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Tanya L. Packer, George Kephart, Setareh Ghahari, Åsa Audulv, Joan Versnel & Grace Warner. (2015) The Patient Activation Measure: a validation study in a neurological population. Quality of Life Research 24:7, pages 1587-1596.
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Brian W. Pennarola, Angie Mae Rodday, Kristin Bingen, Lisa A. Schwartz, Sunita K. Patel, Karen L. Syrjala, Deborah K. Mayer, Sara J. Ratichek, Eva C. Guinan, Mary Jo Kupst, Judith H. Hibbard & Susan K. Parsons. (2014) Changing factors associated with parent activation after pediatric hematopoietic stem cell transplant. Supportive Care in Cancer 23:7, pages 1997-2006.
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Emily J. Hadgkiss, George A. Jelinek, Keryn L. Taylor, Claudia H. Marck, Dania M. van der Meer, Naresh G. Pereira & Tracey J. Weiland. (2015) Engagement in a program promoting lifestyle modification is associated with better patient-reported outcomes for people with MS. Neurological Sciences 36:6, pages 845-852.
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Vallabh O. Shah, Casey Carroll, Ryan Mals, Donica Ghahate, Jeanette Bobelu, Phillip Sandy, Kathleen Colleran, Ronald Schrader, Thomas Faber & Mark R. Burge. (2015) A Home-Based Educational Intervention Improves Patient Activation Measures and Diabetes Health Indicators among Zuni Indians. PLOS ONE 10:5, pages e0125820.
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Rebecca L. Kinney, Stephenie C. Lemon, Sharina D. Person, Sherry L. Pagoto & Jane S. Saczynski. (2015) The association between patient activation and medication adherence, hospitalization, and emergency room utilization in patients with chronic illnesses: A systematic review. Patient Education and Counseling 98:5, pages 545-552.
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Aled L Williams, Ceri J. Phillips, Alan Watkins & Alison B. Rushton. (2014) The effect of work-based mentoring on patient outcome in musculoskeletal physiotherapy: study protocol for a randomised controlled trial. Trials 15:1.
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A Giordano, A Lugaresi, P Confalonieri, F Granella, D Radice, M Trojano, V Martinelli, A Solari, A Giordano, V Martinelli, A Lugaresi, E Pucci, F Granella, M Trojano, A Solari, V Martinelli, E Pucci, M Messmer Uccelli, A Lugaresi, A Giordano, F Granella, A Solari, A Giordano, G Ferrari, F Martini, A Solari, D Radice, G D’Annunzio, A Lugaresi, D Farina, D Travaglini, E Pietrolongo, M Onofrj, V Torri Clerici, S Bonanno, L Brambilla, P Confalonieri, V Martinelli, M Radaelli, J Messina, G Comi, C Tortorella, E Luciannatelli, M Trojano, C Senesi, E Tsantes, F Granella, MZ Conti, MR Rottoli, P Bellantonio, M Fischetti, R Fantozzi, A Pala, S Traccis, G Di Battista, M Bianchi, MD Benedetti, L Gaetani, M Di Filippo, A Carolei, R Totaro, R Lanzillo, V Brescia Morra, R Coppola, S Cottone, C Chiavazza, P Cavalla, C Leonardi, U Aguglia, C Ziuliani, P Valla, F Sasanelli, P Valentino, A Quattrone, Policlinico G. Martino, M Russo, G Vita & P Immovilli. (2014) Implementation of the ‘Sapere Migliora’ information aid for newly diagnosed people with multiple sclerosis in routine clinical practice: a late-phase controlled trial. Multiple Sclerosis Journal 20:9, pages 1234-1243.
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Shari D. Bolen, Apoorva Chandar, Corinna Falck-Ytter, Carl Tyler, Adam T. Perzynski, Alida M. Gertz, Paulette Sage, Steven Lewis, Maurine Cobabe, Ying Ye, Michelle Menegay & Donna M. Windish. (2014) Effectiveness and Safety of Patient Activation Interventions for Adults with Type 2 Diabetes: Systematic Review, Meta-Analysis, and Meta-regression. Journal of General Internal Medicine 29:8, pages 1166-1176.
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Lorraine S Evangelista, Solomon Liao, Marjan Motie, Nathalie De Michelis & Dawn Lombardo. (2014) On-going palliative care enhances perceived control and patient activation and reduces symptom distress in patients with symptomatic heart failure: A pilot study. European Journal of Cardiovascular Nursing 13:2, pages 116-123.
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Racheli Magnezi, Saralee Glasser, Hadar Shalev, Asher Sheiber & Haim Reuveni. (2014) Patient activation, depression and quality of life. Patient Education and Counseling 94:3, pages 432-437.
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Suzanne E. Mitchell, Paula M. Gardiner, Ekaterina Sadikova, Jessica M. Martin, Brian W. Jack, Judith H. Hibbard & Michael K. Paasche-Orlow. (2013) Patient Activation and 30-Day Post-Discharge Hospital Utilization. Journal of General Internal Medicine 29:2, pages 349-355.
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Racheli Magnezi, Yoav S Bergman & Dafna Grosberg. (2014) Online Activity and Participation in Treatment Affects the Perceived Efficacy of Social Health Networks Among Patients With Chronic Illness. Journal of Medical Internet Research 16:1, pages e12.
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Rebecca Marshall, Mary Catherine Beach, Somnath Saha, Tomi Mori, Mark O. Loveless, Judith H. Hibbard, Jonathan A. Cohn, Victoria L. Sharp & P. Todd Korthuis. (2013) Patient Activation and Improved Outcomes in HIV-Infected Patients. Journal of General Internal Medicine 28:5, pages 668-674.
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Marina Kukla, Michelle P. Salyers & Paul H. Lysaker. (2013) Levels of Patient Activation Among Adults With Schizophrenia. Journal of Nervous & Mental Disease 201:4, pages 339-344.
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Judith H. HibbardJessica Greene. (2013) What The Evidence Shows About Patient Activation: Better Health Outcomes And Care Experiences; Fewer Data On Costs. Health Affairs 32:2, pages 207-214.
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Emily J. Hadgkiss, George A. Jelinek, Tracey J. Weiland, Naresh G. Pereira, Claudia H. Marck & Dania M. van der Meer. (2013) Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics. Neurology Research International 2013, pages 1-12.
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Angie Mae Rodday, Elizabeth J. Pedowitz, Deborah K. Mayer, Sara J. Ratichek, Charles W. Given & Susan K. Parsons. (2012) Parental caregiving of children prior to hematopoietic stem cell transplant. Research in Nursing & Health 35:4, pages 328-339.
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Brian W. Pennarola, Angie Mae Rodday, Deborah K. Mayer, Sara J. Ratichek, Stella M. Davies, Karen L. Syrjala, Sunita Patel, Kristin Bingen, Mary Jo Kupst, Lisa Schwartz, Eva C. Guinan, Judith H. Hibbard & Susan K. Parsons. (2011) Factors Associated With Parental Activation in Pediatric Hematopoietic Stem Cell Transplant. Medical Care Research and Review 69:2, pages 194-214.
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Bridget Whitehead. (2010) Research Roundup. British Journal of Neuroscience Nursing 6:6, pages 299-301.
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