Management of patients with Graves' orbitopathy: initial assessment, management outside specialised centres and referral pathways.

Graves' orbitopathy (GO) is uncommon, but responsible for considerable morbidity. A coordinated approach between healthcare professionals is required in order to meet the needs of patients. Early diagnosis can be achieved by a simple clinical assessment. Low-cost effective interventions can be initiated by generalists, which may improve outcomes. Moderate-to-severe GO should be referred to specialised centres. Recommendations for clinical diagnosis, initial management and referral pathways are highlighted.

The impact of thyroid eye disease upon patients' wellbeing: a qualitative analysis.

BACKGROUND: Previous studies using quality of life (QoL) questionnaires have shown poor QoL in patients with thyroid eye disease (TED). However, predetermined questionnaires limit in-depth investigation of psychosocial and emotional effects of TED. A qualitative approach allows detailed exploration of patients' perceptions of wellbeing and can capture their lived experiences. OBJECTIVE: To explore the experience of living and coping with TED. DESIGN AND PATIENTS: A qualitative study involving individual, tape-recorded, semistructured interviews with 25 participants with TED (20 female subjects, median age 54 years, range 28-90 years). Thematic content analysis identified themes, from which theoretical interpretations were formed. RESULTS: Three key themes were identified: (1) development of an altered identity as a result of changes in appearance, abilities and roles due to physical consequences of TED. This was described in the context of life before and after TED; (2) creation of coping strategies including denial, social avoidance, adjustment and stoicism; (3) difficult interactions with healthcare practitioners due to uncertainty surrounding the diagnosis, prognosis and treatment choices, resulting in patients' disengagement, anger and frustration. CONCLUSION: This qualitative study has identified the phenomenon of an altered identity due to direct consequences of TED that impact upon patients' wellbeing, coping strategies and interactions with healthcare professionals.

Exploring the motivations of patients with type 2 diabetes to participate in clinical trials: a qualitative analysis.

PLAIN ENGLISH SUMMARY: Certain patient groups are reluctant to engage with clinical research and consequently findings are not always truly representative of the wider population. With the emphasis on evidence-based clinical practice, clinical research as a core activity for the National Health Service (NHS) and the rising prevalence of diabetes within the United Kingdom (UK) it is important to understand what motivates people to volunteer for research in diabetes and identify the barriers to this involvement. This research interviewed 12 people with type 2 diabetes who had previously taken part in diabetes clinical trials. The transcripts of these interviews were analysed to identify themes that informed the study findings.There were wide ranging reasons for participating in clinical trials. Both altruistic and self-interest motivation were universally expressed. The thought of helping others was a powerful experience but for some there was a sense of duty to volunteer especially if they had benefited from NHS care. Participating was empowering, with extra access to healthcare professionals, practical information and support for their condition. Coping with the logistics of being in a trial relied upon a strong network of family and friends. Some felt anxious at the end of the trial having been supported during the research and appreciating the camaraderie of belonging to a group or team.This study provides insights into the motivations and barriers to involvement in clinical research in type 2 diabetes helping researchers to encourage and support more volunteers in clinical trials. ABSTRACT: Background Certain patient groups are reluctant to engage with clinical research and consequently findings of the research are not always truly representative of the wider population. This, together with a growing prominence of evidence-based clinical practice, an increasing emphasis of clinical research as a core activity for the NHS and the rising prevalence of diabetes within the UK population, requires an understanding of motivations and barriers for patients consenting to participate in diabetes clinical trials.Methods To understand patients' motivations for participating in clinical trials in type 2 diabetes. We conducted a qualitative study involving 12 participants with type 2 diabetes with previous involvement in clinical trials. Individual, tape-recorded, semi structured interviews were conducted to explore motivations and experiences of the participants. We carried out thematic content analysis to identify themes, from which theoretical interpretations were formed.Results There were wide ranging reasons for participating in clinical trials. We identified 3 key themes: (1) Motivations ranged from altruism to self-interest; (2) participation in clinical trials was an empowering experience; and (3) key to participation was a strong network of support.Conclusion Patients are motivated to participate in clinical trials by a sense of altruism coupled with self-interest. This self-interest centres on the belief that participation would be an informative and empowering experience with increased access to healthcare professionals. However the ability to cope with the logistics of being in clinical trials relies upon an extensive and reliable network of support from family, friends, work colleagues and employers, together with a collaborative approach to their care from the researchers and their usual healthcare providers.

Quality of life in thyroid eye disease: impact of quality of care.

Thyroid eye disease (TED) is a chronic debilitating condition causing physical discomfort, facial disfigurement and impaired visual function. The physical consequences of TED could have a negative and lasting impact on patients' employment, hobbies and psychosocial function. In this review, we assess the evidence of the impact of TED on patients' quality of life (QOL) and also explore the effects of suboptimal quality of care on QOL of patients with this disease. It is hoped that recent initiatives, including the Amsterdam declaration, to raise the quality of care for patients with TED will help to improve their QOL.

The patient experience of services for thyroid eye disease in the United Kingdom: results of a nationwide survey.

BACKGROUND: A recent consensus statement from the European Group on Graves' Orbitopathy recommends referring all patients with thyroid eye disease (TED), except the mildest cases, to a specialist multidisciplinary clinic. OBJECTIVE: To study the patients' experiences of accessing services for the treatment of TED in the UK. METHODS: A postal questionnaire survey of 395 members of two patients support organisations for TED in the UK, the TED Charitable Trust and the British Thyroid Foundation. RESULTS: The response rate was 67%. The majority of responders were females (91%) and aged above 45 (74%). There were delays in the diagnosis and referral. In 26% of responders, the time lapsed from the first symptoms to the diagnosis of TED for over 12 months. There was a wide variation in the type of clinic and healthcare professionals involved in the treatment of TED. Only 25% of the responders attended a specialist TED clinic. Out of these, 33% waited over 6 months from the first consultation with a doctor to being seen at a specialist TED clinic. Only 56% of responders were satisfied with the treatment they received for TED. More responders who had attended a specialist TED clinic were satisfied with the treatment than those who had not attended a specialist clinic (67 vs 52%, P<0.05). CONCLUSION: Only a minority of patients with TED are treated at a specialist TED clinic in the UK. Those patients who are treated at a specialist TED clinic are more likely to be satisfied with the treatment.