Development and psychometric properties of a self-assessed knowledge questionnaire for caregivers of people with multiple sclerosis (CareKoMS): a cross-sectional study

被引:1
作者
Podda, Jessica [1 ]
Tacchino, Andrea [1 ]
Verri, Anna [1 ]
Battaglia, Mario Alberto [2 ]
Brichetto, Giampaolo [1 ,3 ]
Ponzio, Michela [1 ]
机构
[1] Italian Multiple Sclerosis Fdn, Sci Res Area, Genoa, Italy
[2] Univ Siena, Dept Physiopathol Expt Med & Publ Hlth, Siena, Italy
[3] Italian Multiple Sclerosis Soc, AISM Rehabil Serv, Genoa, Italy
关键词
caregivers; multiple sclerosis; knowledge; validation; questionnaire; SHARED DECISION-MAKING; QUALITY-OF-LIFE; INFORMATION; HEALTH; SATISFACTION; AID;
D O I
10.1136/bmjopen-2023-071657
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
ObjectivesKnowledge about multiple sclerosis (MS) is crucial for those who provide care and support as caregivers. However, despite the key benefits of acquiring relevant information to properly assume the caregiving role, caregivers' knowledge of MS is poorly investigated. The aim of this study was to develop and validate the Caregivers' Knowledge of Multiple Sclerosis (CareKoMS), a self-assessed questionnaire, to test MS knowledge in caregivers of people with MS. DesignCross-sectional study. SettingItaly. ParticipantsTwo-hundred caregivers (female: 49%) were asked to self-administer the 32-item CareKoMS questionnaire; they had a median age of 60 years (IQR: 51-68 years) and a medium-high educational level (36.5% primary school and 63.5% high school/university). Item analysis using item difficulty index, item discrimination index, Kuder-Richardson-20 coefficient and item-total correlation were assessed. Once excluding less useful items, reliability, floor and ceiling effects and construct validity were calculated on the 21-item CareKoMS final version. ResultsPsychometric evaluation indicates that the 21-item CareKoMS was a good questionnaire with no ceiling or floor effects registered. Internal consistency was satisfactory and acceptable as indicated by the mean value of 0.74 of Kuder-Richardson-20. No ceiling or floor effects have been observed. Interestingly, educational level and disease duration correlated with MS knowledge. ConclusionCareKoMS is a valid self-assessed questionnaire on MS knowledge for caregivers that may be used in clinical practice and research. Assessing knowledge of MS among caregivers is essential to facilitate their caregiving role and thus decrease the burden of disease management.
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页数:8
相关论文
共 42 条
[1]  
AISM, 2022, CART DIR PERS CON SC
[2]  
AISM Website, US
[3]   Comparison of knowledge and psychological well-being between patients with a short disease duration (≤1 year) and patients with more established rheumatoid arthritis (≥10 years duration) [J].
Barlow, JH ;
Cullen, LA ;
Rowe, IF .
PATIENT EDUCATION AND COUNSELING, 1999, 38 (03) :195-203
[4]  
BARLOW JH, 1997, PSYCHOL HEALTH MED, V2, P221, DOI DOI 10.1080/13548509708400580
[5]   Development and psychometric properties of the Multiple Sclerosis Knowledge Assessment Scale: Rasch analysis of a novel tool for evaluating MS knowledge [J].
Bessing, Barnabas ;
Honan, Cynthia A. ;
van der Mei, Ingrid ;
Taylor, Bruce, V ;
Claflin, Suzi B. .
MULTIPLE SCLEROSIS JOURNAL, 2021, 27 (05) :767-777
[6]  
Bimalka, 2016, P35, DOI [10.17265/1548-6648/2016.01.005, DOI 10.17265/1548-6648/2016.01.005]
[7]   Unmet Needs of People with Severe Multiple Sclerosis and Their Carers: Qualitative Findings for a Home-Based Intervention [J].
Borreani, Claudia ;
Bianchi, Elisabetta ;
Pietrolongo, Erika ;
Rossi, Ilaria ;
Cilia, Sabina ;
Giuntoli, Miranda ;
Giordano, Andrea ;
Confalonieri, Paolo ;
Lugaresi, Alessandra ;
Patti, Francesco ;
Grasso, Maria Grazia ;
de Carvalho, Laura Lopes ;
Palmisano, Lucia ;
Zaratin, Paola ;
Battaglia, Mario Alberto ;
Solari, Alessandra .
PLOS ONE, 2014, 9 (10)
[8]  
Bowling A., 2009, RES METHODS HLTH INV, V3rd
[9]   Physician and patient treatment decision-making in relapsing-remitting multiple sclerosis in Europe and the USA [J].
Brown, Hannah ;
Gabriele, Simone ;
White, Joanna .
NEURODEGENERATIVE DISEASE MANAGEMENT, 2018, 8 (06) :371-376
[10]   Perceptions of informal care givers: Health and support services provided to people with multiple sclerosis [J].
Buchanan, Robert ;
Radin, Dagmar ;
Chakravorty, Bonnie J. ;
Tyry, Tuula .
DISABILITY AND REHABILITATION, 2010, 32 (06) :500-510