Cultural and linguistic adaptation and validation of the Function and Life Impact scales of the HAND-Q instrument for the Portuguese population. This readme.txt file was generated on 16/09/2024 by Mirian Santamaría Peláez GENERAL INFORMATION ------------------- Dataset title: Cultural and linguistic adaptation and validation of the Function and Life Impact scales of the HAND-Q instrument for the Portuguese population. Authors: Ana Cristina dos Santos Antunes School of Health Sciences, ESS, Polytechnic of Leiria, Leiria, Portugal. 5230054@my.ipleiria.pt Department of Physical Medicine and Rehabilitation, Curry Cabral Hospital, São José Local Health Unit, Lisbon, Portugal. ana.antunes9@ulssjose.min-saude.pt Mirian Santamaría-Peláez Departamento de Ciencias de la Salud. Facultad de Ciencias de la Salud. Universidad de Burgos. Paseo de los Comendadores s/n, 09001, Burgos, España. mspelaez@ubu.es DESCRIPTION ----------- Language: English/Portuguese. Key words: HAND-Q; Life Impact; Quality of Life; Hand conditions; Translation; Cultural adaptation; Validation. Abstract: Introduction: Clinical conditions affecting the hands are common and can have a significant impact on a person's quality of life. Patient-Reported Outcome Measures (PROMs) are considered the preferred method of assessing the results achieved from the patient's perspective. However, most of them have psychometric limitations. The HAND-Q is a new instrument built using a modern methodology that makes it possible to collect information on hand appearance, health-related quality of life (HRQoL), care experience and treatment from the perspective of patients with any type of congenital or acquired condition affecting the hands. Aim: The aim of this study was to translate, linguistically and culturally adapt and psychometrically validate the Function and Life Impact scales of the HAND-Q instrument, from the original in English, for the Portuguese population, guaranteeing their validity and reliability so that they can be used in clinical practice. Methods: The cultural and linguistic adaptation process will be carried out in two phases: Semantic equivalence, consisting of translation and retroversion; Content validation through a cognitive pre-test, using a sample of 5 to 15 patients with clinical hand conditions and clinical review of the quality of the translation by a panel of 5 to 7 experts. The pilot validation process will be carried out using a convenience sample of 30 participants with clinical conditions of the hand in the Adult Physical Medicine and Rehabilitation services of the ULS São José. Data collection will involve assessing grip strength (Activ5) and pain perception (VAS) and applying a set of questionnaires (Portuguese versions of the MMSE, the Function and Life Impact scales, the DASH and the EQ-5D) and a form on sociodemographic and clinical data. Results: We hope to obtain a consensus translation, adapted to the Portuguese population, which meets the expectations of professionals in the field and is clear to patients. It is also hoped that the translated scales will preliminarily have the validity and reliability to make them viable for use in clinical practice. Dates: 2024 Funding agency: no external funding. Place of data collection: Physiatry and Occupational Therapy departments at São José Local Health Unit and Resposta Saúde Rehabilitation Clinic. ACCESS INFORMATION ------------------ Licence: CC BY-NC DOI: Related publications: at least one related article will be submitted to the American Journal of Occupational Therapy. METHODOLOGICAL INFORMATION -------------------------- This is a methodological, multicentre study for cultural and linguistic adaptation and psychometric validation of an instrument. The data was handled anonymously. The research protocol, objectives, and analysis were preregistered on the Open Science Framework (OSF) before data collection [https://osf.io/rucea/?view_only=a429d1374cda439aa24be00073d52421]. An embargo period is in effect. The project was approved by the ethics committee of the Research Ethics Committee of Polytechnic Institute of Leiria (N.º CE/IPLEIRIA/68/2024; date: 11/06/2024) and by the Board of Directors of the Unidade Local de Saúde São José, EPE, of 07-08-2024, contained in minute no. RCA/33/2024. Informed consent was obtained from all participants. Inclusion criteria: • Age 18A or over. • Ability to read and write. • Clinical condition of the hand. Exclusion criteria: • Present cognitive impairment or Mini Mental State score below the normative cut-off points defined for the Portuguese population (Santana et al., 2016). • Currently hospitalized in an institution. • Failure to complete informed consent. No specific tools are required to interpret the data. FILE OVERVIEW -------------- Spreadsheet “Data_Cognitive Debriefing_OA”: - The file has three pages: - First page: contains all patient data already encoded. - Second page: contains the list of variables and the explanation of the coding used for each of the variables. Variables collected: ID; Included in research; Exclussion cause; Collected place; Age (Years); Gender; Native Country; Native Language; Home (county); Marital Status; Education ; Working/studying at present moment; Referrenced to the study; Context of use (diagnosis and treatment); Category; Appointment type; Congenital; Laterality; Most afected hand; Most affected hand is the dominant hand ; Condition severity; Diagnosis/event date; Surgery; Surgery Date; OT treatments; Begining OT; Other treatments (PT); Funding; MMSE; HANDQ_LI_item; HANDQ_F_item; DASH_item ; EQ_5D_5L_dimensions; EQ_5D_5L_VAS EVA; Usabilidade/Utilidade. Spreadsheet “Data_Expert_panel_OA”: - The file has ten pages: - First page: contains all patient data already encoded. - Second page: contains the list of variables and the explanation of the coding used for each of the variables. - Third page: Contains a summary of experts´ raw data. - Pages 4th to 10th: Contain each expert raw data. Variables collected: ID; Age (Years); Gender; Native Language; Home (county); Education; Concordância; Legend HAND-Q Scales. Spreadsheet “Data_Pilot_OA”: The file has three pages: - First page: contains all patient data already encoded. - Second page: contains the list of variables and the explanation of the coding used for each of the variables. - Third page: Scales coding Variables collected: ID; Collected; Included in research; Age (Years); Gender; Native Country; Native Language; Home (county); Marital Status; Education; Working/studying at present moment ; Referrenced to the study; Context of use (diagnosis and treatment); Category; Appointment type; Congenital; Laterality; Most afected hand; Most affected hand is the dominant hand; Condition severity; Diagnosis/event date; Surgery ; Surgery Date; OT treatments; Begining OT; Other treatments (PT); Funding; MMSE; HANDQ_LI_items; HANDQ_F_items; DASH_items; EQ_5D_5L_dimensions; EQ_5D_5L_VAS; pain EVA; Usabilidade/Utilidade. TABULAR DATA-SPECIFIC INFORMATION --------------------------------- Spreadsheet “Data_Cognitive Debriefing_OA”: - First page: Columns: AF; Rows: 17 - Second page: Columns: BP; Rows: 27 Spreadsheet “Data_Expert_panel_OA”: - First page: Columns: AV; Rows: 9 - Second page: Columns: N; Rows: 39 - Third page: Columns: E; Rows: 40 - Pages 4th to 10th: Columns: F; Rows: 40 Spreadsheet “Data_Pilot_OA”: - First page: Columns DN; Rows: 32 - Second page: Columns: BK; Rows: 24 - Third page: Columns: B; Rows: 84