Perspectives on neurological patient registries: a literature review and focus group study

BMC Medical Research Methodology

Tamara Pringsheim⁷  Nathalie Jetté¹  Janet Warner⁵  Diane Lorenzetti²  Darren Lam¹  Lundy Day⁶  Megan Johnston⁵  Lisa Casselman⁴  Gail MacKean³  Lawrence Korngut⁵ 

[1] Department of Clinical Neurosciences and Hotchkiss Brain Institute, University of Calgary, 1403 29 Street NW, Calgary, Alberta T2N 2T9, Canada;Department of Community Health Sciences, University of Calgary, 3rd Floor, TRW, 3280 Hospital Drive NW, Calgary, Alberta T2N 4Z6, Canada;Department of Community Health Sciences, Faculty of Medicine, University of Calgary, TRW Building, 3rd Floor, 3280 Hospital Drive NW, Calgary, Alberta T2N 4Z6, Canada;Research, Planning and Engagement, 5208 Veronica Rd NW, Calgary, Canada;Department of Clinical Neurosciences and Hotchkiss Brain Institute, University of Calgary, Clinical Neurosciences, South Health Campus, 4448 Front Street SE, Calgary, Alberta T3M 1M4, Canada;Department of Community Health Sciences and Institute for Public Health, University of Calgary, 1403 29 Street NW, Calgary, Alberta T2N 2T9, Canada;Department of Clinical Neurosciences, Psychiatry, Pediatrics and Community Health Sciences, and Alberta Children’s Hospital Research Institute, University of Calgary, Alberta Children’s Hospital, 2888 Shaganappi Trail NW, Calgary, Alberta T3B 6A8, Canada

关键词: Review;    Focus group;    Neurology;    Perspectives;    Patient registries;   

Others  :  866604
DOI  :  10.1186/1471-2288-13-135

 received in 2012-12-07, accepted in 2013-10-30,  发布年份 2013

【 摘 要 】

Background

Patient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature.

Methods

To inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers.

Results

(1) Literature review: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articles underwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological registries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsible use of data and advancement of research, among others, as motivating factors for participating in a patient registry. Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associated costs). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having a clear purpose; low participant burden; and being well-managed among others.

Conclusions

We report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries. The findings of the broad literature review were congruent with the neurological patient and caregiver focus groups. We report common themes across the literature and the focus groups performed. Stakeholder perspectives need to be considered when designing and operating patient registries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.

【 授权许可】

   
2013 Korngut et al.; licensee BioMed Central Ltd.

【 图 表 】

【 参考文献 】

• [1]Outcome Sciences Inc: Registries for evaluating patient outcomes: A user’s guide. Rockville, MD: Agency for Healthcare Research and Quality (US); 2010.
• [2]Dreyer NA, Garner S: Registries for robust evidence. JAMA 2009, 302(7):790-791.
• [3]Caesar-Chavannes CR, MacDonald S: National population health study of neurological conditions in Canada. Chronic Dis Inj Can 2013., 33(3) in press
• [4]Glaser BG, Strauss AL: The discovery of grounded theory; strategies for qualitative research. Chicago: Aldine Pub. Co.; 1967.
• [5]Farooqi A, Smith JF, Lakhani M, Meakin C, Sorrie R, Ashmore S: The impact and acceptability of a central register on the standard of monitoring of lithium therapy: Professional and patient perspectives. J Clin Governance 2002, 10(3):121-126.
• [6]Glendon G, Frost CJ, Andrulis IL, Hanna D, John E, Phipps A, Thompson A, Venne V, Ritvo P: A qualitative study evaluating parental attitudes towards the creation of a female youth cohort (LEGACY) in the Breast cancer family registry. Psychooncology 2010, 19(1):93-101.
• [7]Miller J, Colligan J, Colver A: A qualitative study, using focused interviews, of the information needs of families whose children’s names are on a cerebral palsy register. Child Care Health Dev 2003, 29(6):465-471.
• [8]Wright C, Kerzin-Storrar L, Williamson P, Fryer A, Njindou A, Quarrell O, Donnai D, Craufurd D: Comparison of genetic services with and without genetic registers: knowledge, adjustment, and attitudes about genetic counselling among probands referred to three genetic clinics. J Med Genet 2002, 39(12):e84.
• [9]Philipson MR, Westwood MJ, Geoghegan JM, Henry A, Jefferiss C: Shortcomings of the National Joint Registry: a survey of consultants’ views. Ann R Coll Surg Engl 2005, 87(2):109-112.
• [10]Baird W, Jackson R, Ford H, Evangelou N, Busby M, Bull P, Zajicek J: Holding personal information in a disease-specific register: the perspectives of people with multiple sclerosis and professionals on consent and access. J Med Ethics 2009, 35(2):92-96.
• [11]Jefferson AL, Lambe S, Chaisson C, Palmisano J, Horvath K, Karlawish J: Clinical research participation among aging adults enrolled in an Alzheimer’s Disease center research registry. J Alzheimers Dis 2011, 23(3):443-452.
• [12]Phipps E, Harris D, Brown N, Harralson T, Brecher A, Polansky M, Whyte J: Investigation of ethnic differences in willingness to enroll in a rehabilitation research registry. Am J Phys Med Rehabil 2004, 83(12):875-883.
• [13]Terry AL, Chesworth B, Stolee P, Bourne R, Speechley M: Joint replacement recipients’ post-surgery views about health information privacy and registry participation. Health Policy 2008, 85(3):293-304.
• [14]Barrett G, Cassell JA, Peacock JL, Coleman M: NCR: National survey of British public’s views on use of identifiable medical data by the National Cancer Registry. BMJ 2006, 332(7549):1068-1072.
• [15]Lowery JT, Axell L, Vu K, Rycroft R: A novel approach to increase awareness about hereditary colon cancer using a state cancer registry. Genet Med 2010, 12(11):721-725.
• [16]Marcinkowski JT, Zielonka D: Hope in Huntington’s disease: A survey in counseling patients with Huntington’s disease, as well as the caregivers. Neural Regeneration Res 2009, 4(9):717-720.
• [17]Prince FH, Ferket IS, Kamphuis S, Armbrust W, Ten Cate R, Hoppenreijs E, Koopman-Keemink Y, Van Rossum M, Van Santen-Hoeufft M, Twilt M: Development of a web-based register for the Dutch national study on biologicals in JIA. Rheumatology 2008, 47(9):1413-1416. http://www.ABC-register.nl webcite
• [18]Dueholm M, Rokkones E, Löfgren M, Härkki P, Arason G: Nordic gynecologists’ opinion on quality assessment registers. Acta Obstet Gynecol Scand 2004, 83(6):563-569.
• [19]McEvoy P, Laxade S: Patient registries: a central component of the chronic care model. Br J Community Nurs 2008, 13(3):127-128.
• [20]Franke L, Kommers T, Van WE, Lucasson P, Beek M, Van den Hoogen H, Van Weel C: General practice registrars and research - attitudes toward participation. Aust Fam Physician 2008, 37(4):276-279.
• [21]Rozenblum R, Jang Y, Zimlichman E, Salzberg C, Tamblyn M, Buckeridge D, Forster A, Bates D, Tamblyn R: A qualitative study of Canada’s experience with the implementation of electronic health information technology. CMAJ 2011, 183(5):E281-288.
• [22]Beskow LM, Sandler RS, Millikan RC, Weinberger M: Patient perspectives on research recruitment through cancer registries. Cancer Causes Control 2005, 16(10):1171-1175.
• [23]Schwartz MF, Brecher AR, Whyte J, Klein M: A patient registry for cognitive rehabilitation research: a strategy for balancing patients’ privacy rights with researchers’ need for access. Arch Phys Med Rehabil 2005, 86(9):1807-1814.