Savia de Souza

Patient involvement in the development of a handbook for moderate rheumatoid arthritis.

Self‐management is a key recommendation for people with rheumatoid arthritis (RA). Educational materials may support self‐management, and increasingly patients are becoming involved with the development of these materials. The TITRATE trial compares the effectiveness of intensive management to standard care in patients with moderate RA across England. As part of the intensive management intervention, participants are given a handbook.

Rheumatoid Arthritis Portrayal by UK National Newspapers 2011–2016: A Service User - Led Thematic Analysis of Language Used

BackgroundAn important source of knowledge, beliefs, and attitudes about illness is the mass media. Research has established the often negative and emotive language utilised by journalists to report on physical and mental long-term illnesses. The limited amount of research on rheumatological conditions has largely focused on the extent of, and/or accuracy of media coverage. This is the first published study to examine systematically the language used by the United Kingdom (UK) popular press to specifically describe rheumatoid arthritis (RA).MethodsA patient and public involvement (PPI) approach, involving academics and service users with RA, was used to conduct the research. LexisNexis online repository of print media was searched for articles within a defined five year time frame, which included RA in the headline and/or lead paragraph of 15 UK national non-specialist newspapers. Resultant articles were uploaded to NVivo, and a realist perspective aided a thematic analysis of the data set.ResultsA search of LexisNexis produced 413 newspaper articles, of which 147 met the inclusion criteria. Three themes emerged: (1) language used to describe RA; (2) language used to refer to those who live with RA and; (3) language used to report on potential new treatments for RA. Negative and emotive terms such as ‘attack’, ‘painful’, ‘crippling’, and ‘agony’ were the most frequently used to describe the experience of RA. People diagnosed with RA were often portrayed as ‘sufferers’ or ‘victims’, though neutral language was also deployed. ‘Hope’ and ‘breakthrough’ were the most reported terms for potential new treatments for RA. Across the three themes, tabloid and middle market newspaper articles applied more sensationalised language with attention grabbing headlines and news stories. By contrast, such emotive terminology was less apparent in broadsheets.ConclusionsThe media is a source of information about RA for the general population, but the quality of newspaper journalism about the condition requires improvement. The findings may act as a stimulus for a national public awareness initiative and/or social marketing campaign. How the language currently constructed to describe RA in the press is received by people with RA would be an important area for future research.

Patient involvement in rheumatology outpatient service design and delivery: a case study

Patient involvement is increasingly recognized as important within the UK National Health Service to ensure that services delivered are relevant to users’ needs. Organizations are encouraged to work with service users to achieve excellence in care. Patient education can improve health outcomes and reduce health‐care costs. Mobile technologies could play a vital role in this.