Healthcare priorities in patients with chronic facial pain of temporomandibular disorders

Abstract

ObjectivesTo explore the experiences of patients with temporomandibular disorders (TMDs) with the National Health Service and to discover their healthcare priorities when seeking treatment.MethodsSemi‐structured interviews were used. They were directed using a topic guide covering subjects such as initial visits in primary care, referrals to secondary care, and the effect on symptoms. The discussions were audiotaped and transcribed verbatim. Thematic analysis was utilised to analyse the data.ResultsIn total, 15 participants took part in three focus groups. Six themes were identified: “access to appropriate care”, “organised and coordinated care”, “receiving a diagnosis and enough information”, “interaction with the clinical staff”, “treatment strategies and having an ‘action plan’” and “support and social networks”.ConclusionsThe participants gave accounts of the difficulties encountered in healthcare in general terms and specific to TMD. Most notable was the struggle to access appropriate care, receive a diagnosis and be understood. Our findings suggest that delays in delivering appointments with people of expertise may have caused the worsening of symptoms. However, when a pleasant experience was encountered, access to care was fast, the clinician was understanding and communication with the clinical team was good. These provided positive experiences and were appreciated by the patients.

The development and cognitive testing of a patient‐reported experience measure for patients with chronic pain of temporomandibular disorders

“…The full findings can be found elsewhere. 13 The patients confirmed the suitability of the NHS experience framework to their own experience, but also suggested some modifications. One domain under discussion was the importance of family and friends' involvement in healthcare.…”

“…A qualitative evidence synthesis was carried out in preparation for this study, to complement the data gathered form the focus groups and make sure that important aspects of care are noted. 12 The limitations to this piece of research include the inherent limitations associated with online focus groups and interviews. The research design had to be amended in response to the SARS-CoV-2 (COVID-19) outbreak in the UK at the time of conducting this study to ensure the safety of the participants and the research team.…”

“…12 Subsequently, a qualitative study was conducted to develop the items of the PREM, in the form of focus groups. 13 The research team used the NHS patient experience framework as a basis of the PREM as it consists of a comprehensive list of domains which are important to patients. 14,15 These domains were inspired by the Picker's Institute principles for patient-centred care 6 and were used as a basis of other PREMs such as the patient-reported experience measure for patients with Rheumatoid Arthritis and other rheumatic conditions.…”

“…This was a qualitative study conducted as part of a project to develop a PREM for patients with TMD. In preparation for the project, a qualitative evidence synthesis was conducted to obtain input from the literature regarding the experience of patients with TMD with healthcare services 12 . Subsequently, a qualitative study was conducted to develop the items of the PREM, in the form of focus groups 13 .…”

“…A full description of the focus groups and the results may be found elsewhere. 13 The findings from this series of focus groups, in addition to input from the literature, were used to generate the priority items for the new PREM. Multiple questions were generated for each domain to address the patients' concerns and to capture the important aspects of care for them.…”