Thyroid Eye Disease article
I got a link to this article in a newsletter from Medscape yesterday and thought I'd share it. Medscape is mostly for physicians, nurses, and pharmacists, but anyone can register on the site, and registration is free. The full article can be found here, since the tables didn't make it through c/p here.
The Impact of Thyroid Eye Disease Upon Patients' Wellbeing: A Qualitative Analysis
Stephanie Estcourt; Bijay Vaidya; Anthony Quinn; Maggie Shepherd
Summary and Introduction Summary 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.
Introduction Thyroid eye disease (TED) is an autoimmune disorder commonly associated with Graves' disease.[1-3] It causes facial disfigurement and/or visual deficit, impacting on employment, hobbies and psychosocial aspects of life. Treatments for TED are often suboptimal, leaving patients with residual effects long after completion of the treatment.[4] Several previous quantitative studies, using general health quality of life (QoL) questionnaires, have shown a reduced quality of life in patients with TED compared to the general population and patients with other chronic diseases.[5-7] These findings have been replicated by studies using the TED specific QoL questionnaires,[8-13] and QoL questionnaires relating to vision and appearance.[14,15] While quantitative studies consistently demonstrate poor QoL scores in patients with TED, there are recognized limitations to the use of generic and disease-specific questionnaires,[10,13] and the use of predetermined questionnaires fails to allow in-depth exploration of patients' perceptions of wellbeing and coping strategies. Such in-depth analysis can be achieved with qualitative studies using an emergent, rather than predetermined design. A qualitative approach has been considered as the most appropriate means of capturing patients' lived experiences.[16] Therefore, we have carried out a qualitative study with the aim of investigating the impact of TED on patients' lives.
Patients and Methods We conducted hour-long, in-depth, semistructured interviews with 25 participants with TED ( Table 1 ). Twenty were female subjects; median age was 54 years (range 28-90 years). Sample size was determined by the principle of data saturation. A total of 34 patients were approached for the study, nine of whom declined because of time constraints and reluctance to be interviewed. All participants were euthyroid at time of interview except one who was found to be thyrotoxic post interview. Participants were purposively recruited from the hospital-combined thyroid eye clinic, the local TED support group and by use of a snowballing technique (participant referral of other respondents). This ensured recruitment of participants with varying disease severity, activity and duration, and the possibility of identifying issues from a range of perspectives including age, social class, family structure and disease status. Two other patients with TED acted as patient representatives, reviewing the information sheets and interview guide, and commenting on initial analysis, feedback and the final report.
The interviews were conducted either at the hospital or participant's home. The questions were open-ended, neutral and sensitive, relating to experiences, feelings and knowledge of TED. Nondirective probes were used with an interview guide to ensure that key areas were impartially explored with all participants. Interviews were audio taped and supplemented by field notes. Tapes were transcribed verbatim by an external transcriber and anonymised. Transcripts, field notes and reflective comments formed the raw data. Thematic content analysis was carried out to identify initial key themes and issues, which were further explored in subsequent interviews. Emerging themes were verified by a second qualitative researcher (MS) and the patient representatives. Final analysis developed specific categories from which theoretical interpretations were formed. The study was approved by the local ethics committee, and all participants gave informed written consent.
Results Three main themes were identified: (1) development of an altered identity; (2) creation of coping strategies; and (3) difficult interactions with healthcare professionals (HCPs).
Development of an Altered Identity The physical consequences of TED affected all areas of participants' lives prompting the emergence of an altered identity in response to the disease. This was expressed in similar terms by participants despite differences of disease duration, severity or activity status, and was described in the context of a 'before and after' phase of their lives:
'It makes me feel sad, it's almost as if that was another life then, because I'm so different now.'[09]
The development of altered identity was characterized by the loss of an original personal identity, which frequently caused long-lasting grief, mourning and depression:
'Every time I looked in the mirror it was like looking at a stranger, it just wasn't me any more. Although I've had 16 years to live with it, it's still awful; it's just like a complete stranger looking back at you.'[19]
The main consequence of this transition was social withdrawal and isolation. Many participants felt lonely and vulnerable, with reduced confidence and self-esteem:
'I lost all my confidence, I'd been very outgoing, confident and popular but I just did not want to go out; I didn't want to see anybody.'[07]
The phenomenon of altered identity was multifaceted, and was associated with changes in abilities, appearance, social functions and roles.
Altered Abilities. Altered ability due to visual impairment affected employment and domestic and recreational activities, regardless of age or gender. Loss of independence and increased reliance on others caused anxiety and anger for many participants:
'The annoying thing is I can't drive, I've lost my independence, I used to drop my wife off to work ... she has to get friends to do it now.'[15]
Several participants expressed frustration at the loss of control over issues of personal safety and wellbeing:
'I am worried about crossing roads and definitely don't go out on my own. I always go out with my sister. I wouldn't dream of going shopping on my own.'[17]
Participants in paid employment were anxious about the effects of their altered ability on job security, career progression and potential loss of income. The implications of being unable to continue employment or usual activities created an awareness of personal vulnerability. This vulnerability was expressed by several participants, who had overwhelming fears of blindness, which were at times strong enough to prompt suicidal feelings:
'I thought if I lose my sight I'd rather not be here.'[16]
Altered Appearance. All participants acknowledged an altered appearance and experienced prejudicial judgement as a result. Many felt embarrassed because of facial expressions being misinterpreted:
'Kids were starting to find my eyes scary, so I gave up the voluntary work I was doing at school, helping the children.'[06]
Although the impact of appearance affected both genders, it was acknowledged more by female participants. The inability to wear cosmetics because of increased sensitivity caused social inhibition, leaving many of the younger women experiencing lowered self-esteem:
'I just don't feel sexy or good about myself anymore.'[09]
This effect had profound consequences for some relationships:
'My marriage broke up and I thought no-one else will ever be interested in me again; it was very depressing.'[19]
In contrast, male participants did not report feeling socially inhibited because of their appearance.
Most participants, who had rehabilitative surgery to address concerns about appearance, were pleased with the results:
'I go out now to different functions, I went to a wedding last year which before I'd sort of shy off. It gives you your self-confidence back.'[22]
However, those who expressed disappointment at the outcome seemed to have had unrealistic expectations of the surgery, expressing desires for it to enable them to go back to the life they had before TED.
Altered Role Identity. Many participants experienced the need to redefine their personal, social and workplace roles. An altered role identity frequently caused guilt and frustration when it proved impossible to maintain previous roles:
'It's just not fair on her. I just can't play with my granddaughter like I used to.'[02]
Responses from others to this changed role identity varied from a lack of interest and in some cases open hostility, to support.
Creation of Coping Strategies The ability to cope amongst participants depended upon personal circumstances and support networks. Participants used diverse coping strategies, including humour, denial, social withdrawal and adjustment. Bitter, ironic humour was frequently used to minimize the detrimental psychosocial impact of TED:
'I had to be careful that I didn't smile at small children, because if "the eye" looked they'd cry' (laughs).[07]
All participants expressed the desire to recount their stories and rationalize events and experiences. However, few felt that traditional patient group meetings, which facilitate this activity, would be a realistic option:
'They're not for me. It's partly the group thing; partly the hassle of getting somewhere.'[11]
Denial was a frequently used strategy. For example, several continued to drive, despite visual impairment and awareness of the dangers:
'They questioned the fact I was driving, so I leave the prism glasses on the dash so I can use them as a good excuse for running up the backs of things.'[07]
In order to accommodate the effects of TED, participants had to adapt their lifestyles. Many participants, particularly female subjects, attempted to disguise the effects of TED:
'I'm never without sunglasses. I probably go through five pairs a year. It helps with the bright lights - and, of course, the "looking like a frog" isn't so nice.'[13]
Despite varied coping strategies all participants conveyed a sense of stoicism, which ranged from a passive acceptance to an active sense of survival:
'I just get on and live with it really. I'll survive.' [07]
Interactions With Healthcare Professionals Many participants recounted difficult interactions with HCPs. The uncertainty surrounding diagnosis, prognosis and treatment decisions combined with participants' denial of events frequently resulted in anger and frustration:
'I saw a doctor who couldn't really explain what was wrong, I felt disheartened by this. I went away feeling that I still didn't understand why I was like this.'[04]
This uncertainty and ambiguity reduced many participants' confidence in HCPs:
'I was told, "Maybe you'll need radiotherapy, or a decompression, or maybe intravenous steroids", and that was in one consultation. To say three things and he didn't know which, really, really frightened me.'[10]
Consultations that ignored the concept of shared HCP/patient clinical decision-making often left participants feeling disconnected from the consultative process and inclined to withdraw from involvement in their care:
'I just go and they talk among themselves and they flick through my file, look at my test results and never tell me anything.'[18]
In contrast, consultations that actively involved participants became an empowering process that facilitated engagement with treatment:
'The fact that someone's explained something to you makes you feel more involved and not just one of the cattle.'[04]
Several participants described a lack of communication between primary and secondary care, especially in the context of smoking cessation. Many were aware of the links between smoking and TED, although less than half had been able to stop smoking ( Table 1 ). Of those who continued to smoke, many expressed guilt at their failure and perceived that HCPs no longer took them seriously.
Discussion This first qualitative study in TED provides insight into patients' perceptions of wellbeing and has identified the phenomenon of an altered identity in patients with TED. Our findings corroborate those from previous questionnaire-based studies, confirming that TED has a negative and lasting impact on patients' QoL.[4-14] Chronic illnesses associated with disability and/or disfigurement have been shown to undermine an individual's identity,[17] causing a process of grief and mourning.[18,19] This study indicates that, in TED, the disability of disfigurement has a stronger psychosocial impact than the disability associated with decreased visual functioning, consistent with the findings of a previous study.[20] Facial expressions and eye contact are essential components to communication, and the fixed stare associated with TED can be misinterpreted as hostile and evoke negative reactions from others. Such negative reactions and subsequent social stigmatization have been described in other conditions with facial disfigurement, often resulting in social withdrawal.[21-23]
This study has identified diverse strategies used by patients to cope with the consequences of TED. Such strategies are often influenced by patients' intrinsic and extrinsic coping mechanisms, personality and social support networks.[22-24] A notable observation of this study was the desire of many patients with TED to recount their experiences. Such a process is often associated with patient-led support groups; however, for many patients, attending traditional support meetings was difficult for psychological and practical reasons. Several participants of this study perceived facing fellow sufferers, which served only to re-enforce the reality of their situations, as too painful. Information that does not require face-to-face interactions may be more suitable for some patients with TED, such as the Internet, e-mails, telephoning and texting. A similar psychosocial effect resulting in social withdrawal may account for the reluctance of some of the patients to participate in this study, although it is possible that those patients who refused to participate in this study may have different psychological morbidity.
Several participants of this study reported negative experiences during consultations with HCPs, often finding it hard to engage in decision-making processes and developing trust and confidence in HCPs. The combination of loss of confidence and self-esteem with the uncertainty and ambiguity that surrounds diagnosis, prognosis and treatment of TED may explain these experiences. A critical source of conflict is the disparity between HCPs' assessment of clinical severity of TED and patients' self-assessment of their condition.[25] The findings of this study suggests that patients with TED need long-term follow-up with formal systems of support and programmes of rehabilitation that incorporate the development of coping strategies as well as practical advice. In addition, some patients require input from psychologists; such a need for professional psychological support has also been identified in other conditions causing facial and visible disfigurement.[20,22] The clinics combining a multidisciplinary approach seem key to the provision of complex and holistic care for patients with TED.
In conclusion, this study has identified the phenomenon of development of an altered identity in patients with TED as a direct consequence of the physical and psychological effects of the disease, which has a profound impact on patients' wellbeing, their coping strategies and interactions with healthcare professionals.
Table 1. Demographics and Clinical Characteristics of Participants
Participants* Sex Age (years) Duration of TED (years) Smoking status CAS† NOSPECS‡ Visual acuity R / L Palpebral aperture (mm) R / L Proptosis (mm) R / L Subjective diplopia§ Treatments¶
1 M 50 2 Ex-smoker 0/10 2a, 3b, 4a 0·3 0·2 12 12 27 25 2 OS
2 F 57 1 No 7/10 2b, 3a, 4a 0·0 0·0 12 13 24 24 2 OS, R
3 M 90 2 No 0/10 4a, 6a 0·2 –0·1 10 10 20 20 2 IS, R, DS
4 F 64 26 No 0/10 2a, 3b, 4a, 6a 0·0 –0·1 17 14 28 26 1 OS, R
5 F 57 4 Smoker 0/10 2a, 3b, 4a –0·2 –0·2 11 11 28 28 2 OS, R
6 F 50 5 No 0/10 2a, 4a –0·2 –0·2 12 12 20 20 1 OS
25 F 56 < 1 No 2/10 2a, 3a, 4b 0·3 0·1 11 11 23 23 3 OS
*Participants 8, 9, 10 and 19 were recruited from the local TED support group; the others were recruited from the hospital combined TED clinic. †Clinical activity score at time of interview.[26] ‡NOSPECS at time of interview.[27] §Subjective diplopia: never, 0; intermittent, 1; inconstant, 2; constant, 3. ¶Treatment for TED: No treatment = N; oral steroids = OS; intravenous steroids = IS; radiotherapy = R; decompression surgery = DS; rehabilitative surgery = RS
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Acknowledgements
We thank Kim Clough and Clare Mayhew, in their roles as patient representatives, for their time and valuable contribution to the design and analysis of this study.
Funding Information
The Research and Development Directorate, Royal Devon and Exeter NHS Foundation Trust, the British Thyroid Foundation and the Thyroid Eye Disease Charitable Trust funded the study.
Reprint Address
Dr Bijay Vaidya, Diabetes & Endocrinology Centre, Royal Devon & Exeter Hospital, Haldon View Terrace, Exeter, EX2 5EQ, UK. Tel.: +44 (0)1392 402281; Fax: +44 (0)1392 402270; E-mail: bijay.vaidya@pms.ac.uk
Stephanie Estcourt,* Bijay Vaidya,* Anthony Quinn,† Maggie Shepherd‡
*Department Endocrinology, Royal Devon & Exeter Hospital, Exeter †West of England Eye Unit, Royal Devon & Exeter Hospital, Exeter ‡Institute of Health and Social Care Research, Peninsula Medical School, Exeter, UK