Rheumatology outpatient clinic letters: current healthcare professional practice, and patient experience and understanding

Background/Aims
UK guidance from the Academy of Medical Royal Colleges, 2018, encourages healthcare professionals (HCPs) to write outpatient clinic letters directly to patients, copied to their GP. Current HCP practice in rheumatology has been neither explored nor quantified. In addition, patients’ experience of rheumatology clinic letters, and understanding of key terminology, is not known. We aimed to address these gaps by investigating how rheumatology outpatient clinic letters are currently written and received.

Methods
Surveys of adult rheumatology patients and HCPs were designed in partnership with patients and HCPs. Recruitment took place across eight UK NHS sites, patient and professional organisations and networks, and social media. Surveys were available online for 12 weeks in 2024. Paper versions and in-person support were available on six days, across four sites. Data were analysed using descriptive statistics. NHS ethical approval was gained.

Results
705 patients and 299 HCPs began the surveys; 619 (88%) patients and 255 (85%) HCPs completed them. Patients were adults from all age groups; 69% were aged 46-75, 90% were female and 92% were white. HCPs included consultants (54%), resident and staff-grade doctors (16%), nurses (14%), allied health professionals (7%) and pharmacists (4%). 68% of HCPs were aged 36-55, 69% were female and 76% were white. 79% of HCP respondents write clinic letters to GPs, 15% of whom do not copy in the patient. 20% write directly to patients, copied to the GP. 2% write two versions: one each for the GP and patient. Conversely, HCPs typically (59%) write results letters to patients, copied to the GP. Of patients who remember receiving a letter, 63% reported their most recent letter was written to the GP, 98% read it, and 50% showed it to someone else (usually their partner/spouse). 69% of those who read the letter found it easy to understand and 73% believed it reflected accurately the consultation. Regarding rheumatology terminology, patients commonly selected the correct definition from five possibilities for the following terms: synovitis (80%), chronic (83%), osteoarthritis (85%), inflammation (87%), flare (92%) and disease modifying medication (93%). However, 11% of patients thought ‘osteoarthritis’ meant ‘inflammatory arthritis’, and 10% thought ‘synovitis’ was ‘infection of the joint’. 56% of patient respondents chose an incorrect definition for ‘acute’, 66% of whom were ‘sure/very sure’ about their response’s accuracy. 48% thought acute meant ‘severe’.

Conclusion
This UK-wide survey provides evidence that the majority of HCPs are not currently following national guidance on outpatient clinic letter-writing. The reasons for this, and potential levers to change practice, need further investigation. While the majority of patients read clinic letters, their understanding of key terminology is variable. HCPs need to be aware of the potential for miscommunication and misinterpretation.