Brazilian version of the “Primary Sjögren’s Syndrome - Quality of Life questionnaire (PSS-QoL)”: translation, cross-cultural adaptation and validation

Author:

Miyamoto Samira Tatiyama1ORCID,Serrano Érica Vieira2,Gianórdoli Ana Paula Espíndula2,Altoé Lara Betini1,Noronha Bianca Domingos1,Santos Pedro Henrique Alves dos1,Pedrini Ana Paula Truhlar1,Silva Nicole Reis Souza da1,Favarato Letícia Fonseca2,Alochio Luíza Vallory2,Tomé Weider Andrade2,Lackner Angelika3,Valim Valéria2

Affiliation:

1. Universidade Federal do Espirito Santo

2. Hospital Universitario Cassiano Antonio Moraes

3. Medical University of Graz: Medizinische Universitat Graz

Abstract

Abstract

Background People with disabilities frequently experience barriers in seeking healthcare that lead to poorer health outcomes compared to people without disabilities. To overcome this, it is important to assess the accessibility of primary health facilities – broadly defined to include a disability-inclusive service provision – so as to document present status and identify areas for improvement. We aimed to identify, adapt and pilot test an appropriate tool to assess the accessibility of primary health facilities in Luuka District, Uganda. Methods We conducted a rapid literature review to identify appropriate tools, selecting the Disability Awareness Checklist (DAC) on account of its relative brevity and development as a sensitization and action tool. We undertook three rounds of adaptation, working together with youth researchers (aged 18 – 35) with disabilities who then underwent 2 days of training as DAC facilitators. The adapted tool comprised 71 indicators across four domains and 12 sub-domains. We also developed a structured feedback form for facilitators to complete with healthcare workers. We calculated mean accessibility scores overall, per domain and per sub-domain, and categorised feedback form suggestions by type and presumed investment level. We pilot-tested the adapted tool in 5 primary health facilities in one sub-district of Luuka, nested within a pilot healthcare worker training on disability. Results The average overall facility accessibility score was 19.7% (range 12.3 – 28.8). Facility scores were highest in the universal design and accessibility domain (29.7%, 22.6 – 41.9), followed by reasonable accommodation (21.3%, 6.7 – 33.3). Average scores for capacity of facility staff (9.3%, 6.7 – 20.0), and linkages to other services were lower (5.0%, 0 – 25.0). Within the feedback forms, there were on average 21 suggestions (range 14 – 26) per facility. Most commonly, these were categorised as minor structural changes (20% of suggestions), with a third categorised as no (2%) or low (33%) cost, and the majority (40%) medium cost. Conclusions Overall accessibility scores were low, with many opportunities for low-cost improvement at the facility level. We did not identify any issues with the implementation of the tool, suggesting few further adaptations are required for its future use in this setting.

Publisher

Research Square Platform LLC

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