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Abstract Background Translation and cross cultural adaptation of patient reported outcome measures (PROMs) involves a step referred to as harmonisation, following forward and backward translation of the measure. This article proposes the introduction of methods not previously included in the process of harmonisation. The aim of the study was to introduce shared decision making (SDM) and the practice of community translation (CT) during the harmonisation of the Afrikaans for the Western Cape version of the Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire, a PROM that measures symptoms and activity and participation in persons with upper limb conditions. Methods A broader approach to harmonisation is proposed by incorporating CT and SDM in addition to existing methods toward harmonisation. Participants (n = 8) involved in the harmonisation meeting included the principal investigator, a linguistic expert, occupational therapists with knowledge of the target population, context and the DASH questionnaire and members of the target population with and without upper limb conditions. A partnership was formed with the participants (a principle of SDM) and the principles of non-parallel CT and the CT approach were applied during harmonisation. Employing CT principles ensures that the norm for the translation is set by the population the translation is intended for. Results Forward and backward translation of the DASH questionnaire presented a version of the measure in the target language for consideration during harmonisation. There were however a significant number of conceptually problematic items on the version presented at the meeting. Only seven items (7 of 30) remained unchanged. Conclusion SDM and CT was used during the harmonisation of the Afrikaans for the Western Cape DASH questionnaire. Both these practices could have relevance in the translation and cross-cultural adaptation of PROMs where the translation is intended for persons from low socio-economic backgrounds and low levels of education.

Introduction: Occupational Therapists should use relevant patient reported outcome measures as part of providing evidence for occupational therapy intervention. Measures must be responsive, valid and reliable for use in all health sectors. An essential requirement is that the measure be available in the language of the populations it is intended for. As most measures are developed in the English language for use in English speaking countries, we put forward an opinion on the practice of community translation during the translation and cross-cultural adaption of patient reported outcome measures towards increased clinical utility in the public health sector of South Africa. [ABSTRACT FROM AUTHOR]

Background: Translation and cross cultural adaptation of patient reported outcome measures (PROMs) involves a step referred to as harmonisation, following forward and backward translation of the measure. This article proposes the introduction of methods not previously included in the process of harmonisation. The aim of the study was to introduce shared decision making (SDM) and the practice of community translation (CT) during the harmonisation of the Afrikaans for the Western Cape version of the Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire, a PROM that measures symptoms and activity and participation in persons with upper limb conditions. Methods: A broader approach to harmonisation is proposed by incorporating CT and SDM in addition to existing methods toward harmonisation. Participants (n = 8) involved in the harmonisation meeting included the principal investigator, a linguistic expert, occupational therapists with knowledge of the target population, context and the DASH questionnaire and members of the target population with and without upper limb conditions. A partnership was formed with the participants (a principle of SDM) and the principles of non-parallel CT and the CT approach were applied during harmonisation. Employing CT principles ensures that the norm for the translation is set by the population the translation is intended for. Results: Forward and backward translation of the DASH questionnaire presented a version of the measure in the target language for consideration during harmonisation. There were however a significant number of conceptually problematic items on the version presented at the meeting. Only seven items (7 of 30) remained unchanged. Conclusion: SDM and CT was used during the harmonisation of the Afrikaans for the Western Cape DASH questionnaire. Both these practices could have relevance in the translation and cross-cultural adaptation of PROMs where the translation is intended for persons from low socio-economic backgrounds and low levels of education. [ABSTRACT FROM AUTHOR]

Global disease registries are critical to capturing common patient related information on rare illnesses, allowing patients and their families to provide information about their condition in a safe, accessible, and engaging manner that enables researchers to undertake critical research aimed at improving outcomes. Typically, English is the default language of choice for these global digital health platforms. Unfortunately, language barriers can significantly inhibit participation from non-English speaking participants. In addition, there is potential for compromises in data quality and completeness. In contrast, multinational commercial entities provide access to their websites in the local language of the country they are operating in, and often provide multiple options reflecting ethnic diversity. This paper presents a case study of how the Global Angelman Syndrome Registry (GASR) has used a novel approach to enable multiple language translations for its website. Using a "semi-automated language translation" approach, the GASR, which was originally launched in English in September 2016, is now available in several other languages. In 2020, the GASR adopted a novel approach using crowd-sourcing and machine translation tools leading to the availability of the GASR in Spanish, Traditional Chinese, Italian, and Hindi. As a result, enrolments increased by 124% percent for Spain, 67% percent for Latin America, 46% percent for Asia, 24% for Italy, and 43% for India. We describe our approach here, which we believe presents an opportunity for cost-effective and timely translations responsive to changes to the registry and helps build and maintain engagement with global disease communities. [ABSTRACT FROM AUTHOR]

Introduction: Several patient-reported outcome measurements (PROMs) are available in the literature to support the evaluation and diagnosis of temporomandibular disorders and headaches. However, clinicians and researchers usually complain that they had no education on PROMs and low overall knowledge about PROMs. Objective: This study aimed to summarize, describing the measurement properties and clinical applicability of the main condition-specific PROMs available in the literature to the assessment of patients with Temporomandibular Disorders and Headaches. Methods: The current manuscript reviewed 10 PROMs commonly used in the field. Four instruments about functioning and disability: 1. Mandibular Function Impairment Questionnaire (MFIQ), 2. Craniofacial Pain and Disability Inventory (CF-PDI), 3. 8-item and 20-item Jaw Functional Limitation Scale (JFLS), and 4. Manchester Orofacial Pain Disability Scale (MOPDS). Two instruments about headache-related disability: 5. Headache-Related Disability Index (HDI) and 6. Headache Impact Test-6 (HIT-6). Three instruments focused on TMD and headache screening: 7. 3Q/TMD, 8. Short-Form Anamnestic Fonseca Index (SFAI), 9. Headache Screening Questionnaire. In addition, one instrument about maladaptive beliefs regarding pain and injury: 10. Tampa Scale for Kinesiophobia for Temporomandibular Disorders (TSK-TMD). Conclusions: The knowledge about the limitations and applicability of the PROMs commonly used to assess TMDs and Headaches can help clinicians and researchers to obtain reliable and valid outcomes to support the decision-making process. The current review recognizes the importance of using patient-reported outcome measures in research and clinical practice. However, our findings call the attention that further studies on the measurement properties of such instruments are imperative. [ABSTRACT FROM AUTHOR]