Older patients’ experience of primary hypothyroidism: A qualitative study

Abstract Background Primary hypothyroidism is a common endocrine disorder, more so in an increasing UK ageing population. There is no qualitative research examining the older patient perspective of symptoms, treatment and self‐management of hypothyroidism. Objective In this study we explored the experience of hypothyroidism in older people and examined how this may influence their understanding and acceptance of diagnosis, treatment with Levothyroxine and the monitoring process. Design We conducted semi‐structured interviews with 18 participants aged between 80 and 93 years. Interview transcripts were analysed using a thematic approach. Results The themes involved older individuals’ knowledge about symptoms, confidence in diagnosis and understanding of clinical management regimen to understand hypothyroidism. Interpretation of the themes was informed by the Health Belief Model. Conclusion Our findings can help to inform the development of interventions by treating clinicians and support staff to engage older patients in the long‐term management of this chronic condition.

advancing age, 4 concomitant medication or co-morbidities. Ongoing review should include an estimation of serum TSH level annually 2 and a clinical assessment of wellbeing. 5 The dearth of published research relating to hypothyroidism in older patients significantly limits understanding and management of the condition in this age group. Hypothyroid individuals havereported moretiredness, weight gain, brittle nails, dry skin and hair, than euthyroid individuals. 6,7 It is acknowledged that these classic symptoms of hypothyroidismcan be vague and ambiguous. 8 This association has not been specifically observed in older people. Existing literature also focuses on clinical aspects of hypothyroidism such as its negative impact on cognitive function, 9 adverse psychological wellbeing 10 or long term complications of over-treatment with LT4 such as bone fracture. 11 It has been recommended that in patients over 85 years of age the initial replacement LT4 dose should be lower and there should be smaller increments in dose adjustment to avoid cardiac complications. 12 Two interview studies, again focusing on younger individuals, looked at patient perspectives of hypothyroidism. In a convenience sample of twelve females aged between 32 and 68 in Canada patients described initial and ongoing symptoms despite treatment with thyroid hormone replacement and the experience of diagnosis. Patients continued to seek validation of their experience at diagnosis and during the treatment phase. 8  It is not known how relevant this information is to the experiences of older individuals. This is important because preliminary evidence is emerging to suggest that current guidelines for the management of hypothyroidism may not be appropriate for older patients. Different TSH reference ranges may be required for elderly patients to prevent excess mortality. 13,14 We carried out an interview study alongside a feasibility randomised controlled trial (RCT) to examine the impact of reducing the dose of LT4 in patients aged 80 and over with an existing diagnosis of primary hypothyroidism. 15 Whilst the purpose of this embedded study was to explore barriers and facilitators to recruitment and retention of older patients in a clinical trial, interviewees' narratives incidentally provided a unique insight into their experiences and beliefs in relation to hypothyroidism. This paper reports these novel findings and discusses thisdata relating to older individuals with a chronic condition within the framework of the Health Belief Model (HBM). 16

| Ethics
Favourable opinion was obtained from Sunderland NHS research ethics committee on 03/04/2012 (reference 12/NE/0098) for this study that took place in the North East of England. All participants provided written informed consent.

| Design
This is a qualitative study using a semi-structured topic guide.
Interviews were undertaken by LI and took place between November 2012 and December 2013. Interviews were audio recorded and transcribed verbatim. All patient/personal identifiers were removed or disguised in the transcripts so the patients described are not identifiable and cannot be identified through the details of the story.

| Participants
Participants were eligible if they had a diagnosis of primary hypothyroidism for at least 6 months treated with LT4, TSH levels within the local reference range and were community dwelling. Exclusion criteria were: previous diagnosis of thyroid cancer, inability to provide informed consent, or risks to the researchers visiting the participant at their home.

| Procedure
Participants were approached after agreeing to randomisation on the SORTED 1a RCT ("Accepters") or from a group of patients who had declined the trial ("Decliners"). Accepters were purposively sampled for the interview study based on characteristics such as recruiting centre, location of study visits (home or hospital), geographical spread (rural or urban) and gender. Purposive sampling was planned for Decliners but recruitment proved difficult so these patients were approached sequentially. All approached trial Accepters agreed to take part in an interview (n = 11) and of the 24 Decliners approached, seven agreed to be interviewed. We interviewed participants individually or with a significant other present such as spouse or adult offspring. We did not consider conducting focus groups as the majority of participants had requested domiciliary visits for the RCT. One interview was conducted in a hospital Out-Patient department at the participants' request and the others were held at participants' homes. Interviews were completed within 4 weeks of accepting or declining trial participation to help with recall and Accepters had a further interview once RCT participation had ended in order to reflect upon trial involvement.
Interviews lasted an average of 35 minutes. They were deliberately kept short and had a conversational style to maintain the patient's focus and prevent fatigue. A topic guide was followed with open ended, neutral and sensitive questions that primarily explored patient's reasons for agreeing and declining to participate in the RCT. Respondents were also asked about diagnosis, symptoms, elements of self-management and treatment with LT4. Questions were informed by a review of relevant literature. Patient narratives in response to these questions were typically embedded within their experience of living with hypothyroidism. Areas of discussion brought up by the participants were then examined in greater depth.

| Data analysis
Initially LI became immersed in the data by conducting and transcribing the interviews and reading through the manuscripts and reflexive notes. Emergent themes were discussed in depth with SH and TR and agreement was high. We developed a coding frame to organise the data into meaningful groups. Themes were identified as the aspects of data that captured something new or important in relation to the older person's experience of hypothyroidism. Formal analysis used open and focused coding, constant comparison, deviant case analysis and memoing. 17 Codes were added or revised as new themes and sub-themes became apparent. The transcripts were annotated with these codes. Interviews continued until data saturation was reached and no new themes were emerging. 18

| RESULTS
The characteristics of the Accepters and Decliners are shown in Tables 1 and 2 respectively. There were thirteen female and five male participants. Median age was 83 years (range 80-93 years) and median length of diagnosis of hypothyroidism was 14 years (range 3-24 years).
Both groups reported similar experiences of diagnosis, treatment and management of hypothyroidism. Three key themes emerged: a general lack of knowledge about the symptoms of hypothyroidism and the circumstances surrounding diagnosis which were sometimes vague; treatment was understood in terms of biochemical management such as the reliance on annual blood tests, the tablets required for its control and past experience of dose changes; ongoing management was generally conveyed in terms of trust in the General Practitioner's (GP) management of the condition.

| Understanding hypothyroidism in terms of symptoms
Six participants had presented with manifest symptoms to their GP before diagnosis. Some had presented with tiredness which became gradually noticeable and necessitated multiple appointments until a diagnosis was made. Two female participants recounted how they had experienced more profound warning signs that had impacted significantly on their quality of life. These ladies, who had been diagnosed many years ago when in their fifties, gave very similar accounts surrounding the presentation of their symptoms. These participants reported that their GP attributed symptoms to the ageing process and in particular to menopause. Consequently both participants had delayed diagnoses which had caused them distress. The effect of thyroid replacement treatment on these participants' symptoms was reported to be immediate and dramatic. Some of the remainder reported being unaware of any obvious symptoms, describing their diagnosis as an incidental finding following a routine blood test. It is of course feasible that GPs recognised or elicited experience of symptoms in their discourse with patients, and then instigated appropriate investigations to exclude thyroid disease without relaying this information to the patient.
Some participants appeared to be uncertain about the relationship of their symptoms to hypothyroidism and persisting symptoms were not perceived as problematic (in terms of their hypothyroidism) once treatment with LT4 had commenced. These beliefs were often reinforced by similar reflections made by family members or friends. Participants acknowledged trust in their GP and expressed a belief that the GP's prime consideration was for their general welfare despite feeling vulnerable in the clinical process. Underlying the ongoing monitoring process is a sense of stoicism and to a certain extent a passive acceptance of the status quo.

| CONSIDERATION OF EMERGENT THEMES WITHIN THE FRAMEWORK OF THE HEALTH BELIEF MODEL
Knowing how older patients understand their hypothyroidism has important implications for how this condition is managed within this age group and will be particularly important if we need to evaluate an age related TSH reference range in the future. 14  A further core HBM construct is perceived seriousness, which is the individual's judgement as to the severity of their condition. Our findings suggest that for the older participants we interviewed, their perceived severity of hypothyroidism is influenced by their initial experience of receiving a diagnosis, in particular whether or not their diagnosis came about following significant manifest symptoms or was an incidental finding following what appeared, to them at least, a routine blood test. The circumstances surrounding diagnosis also influenced participants' beliefs about the presence of disease, with some questioning the need for medication and others demonstrating an expectation that a reduction in LT4 dose would ultimately result in a return of symptoms.
Conceptualising our findings in this way already begins to illuminate potential perceived benefits and perceived barriers, the remaining two core constructs of the HBM, which are likely to influence the appropriate management, or changes to the management of hypothyroidism in older patients. The model is suggesting for example, that patients who perceive benefits of being on a higher dose of LT4 for the suppression of symptoms may perceive a reduction in LT4 dose as a 'threat', which will in turn influence the likelihood of them being receptive to a reduction in dose (Figure 1). Similarly, perceived barriers to ongoing management appear to be a lack of understanding of hypothyroidism and the significance of TSH levels and their relationship to LT4 doses. Importantly, the beliefs captured within these constructs are, theoretically, amenable to change and the framework provides a basis for informing the development of interventions to support behaviour change and improved management of hypothyroidism in this age group.
In addition to these four core constructs, the HBM further proposes a number of modifying factors (personal factors relating to the individual), cues to action (factors that prompt the person to do something), and self-efficacy (the individual's belief in their ability to do something) that can influence the individual's perceptions of susceptibility and illness severity. HBM helps to illustrate theoretically how patients' disconnection between on-going symptoms and the stability of their hypothyroidism may inhibit them acting on manifest symptoms as 'cues to action' to improve the management of ongoing symptoms. The patients also seemed to lack self-efficacy, tend not to challenge medical practitioners and accept prioritisation of TSH control over symptom relief.

| DISCUSSION
For this sample of participants, perceptions surrounding diagnosis, treatment and management of hypothyroidism tended to lead towards a belief that this disease is relatively symptom free, has a simple remedy and a predictable management regime which does not require behaviour modification. No one expressed any ill effects from taking LT4 and the therapy appears to be convenient and achieves the desired therapeutic effect. Treated hypothyroidism causes no major disruption to patients' lives, there are no flare-ups and the managed disorder appears to be fairly predictable and certain.
There is an implicit acknowledgement that management of an under-active thyroid is biochemical rather than symptomatic. Although GPs may be discussing symptoms with patients during appointments, patients may not recognise this. An acknowledgement of the existence of possible symptoms and some advice or treatment may lessen their impact. The relationship between symptoms, hypothyroidism and activities of daily living and hence physical and emotional functioning in this age group are not well understood. Our findings suggest that a combination of circumstances can lead to a lack of anxiety about hypothyroidism and other established long-term conditions take precedence especially if they limit functionality.
By understanding prescribed medication and its use, older people could assume responsibility and contribute to decisions in relation to their health care. An important aspect of enabling and encouraging self-care for older people may be to provide education catered to the individual. A key aspect of the Healthy Ageing Model 19 is the health professional acting as a coach rather than solely as a source of information. The clinician helps to set individualised, achievable goals in conjunction with the patient in the primary care setting. Our findings suggest that patients in this age group do want to understand hypothyroidism and its management, especially when LT4 doses are adjusted.
However, they do not understand dose changes. An explanation of the relationship between biochemical markers and dosage could address this uncertainty and aid patients' understanding. Patients' past experience and sense of coherence shows that as they age they tend to take more medication for other co-morbidities and the dosage of medication also increases. Although participants state that they are not concerned about a change in LT4 dose on their health status, they assume that they would feel worse if the dose was reduced. If LT4 doses always increase then this may have subtle effects on patients' understanding of the disease. The participants who have had LT4 dose reductions in the past have felt some anxiety and assumed that it would be a temporary measure. These findings all have implications for the successful and appropriate management of older patients with hypothyroidism.
However in hypothyroidism patients generally assume that their biochemical results do not vary and annual monitoring is sufficient.
When biochemical results are reported as being normal this creates an uncertainty with regard to ongoing symptoms. There is a disconnection on the part of the patient with regard to ongoing management of this condition where they strongly report the perspective of the clinician. This results in little inclination to disengage from the consultative process. Participants trust their GP to prescribe the LT4 dosage that they require.
Mapping our findings to the HBM allowed us to structure the preliminary understanding gained from our participant interviews within a robust theoretical framework of health related behaviour. This analysis provides the basis for generating hypotheses and will be used to guide further exploratory work in this area. Assessing older patients' personal models of other chronic conditions (diabetes) has been seen to be valuable in promoting self-management especially through the identification of beliefs regarding the effectiveness of treatment which were predictive of dietary intake and physical activity. Understanding illness models can create individualised education and counselling sessions. 20 The participants in this study described being passive in the medical decision making process in relation to their hypothyroidism and tended to give it a low priority amongst other health status variables. The assignment of low priority, perhaps because of the lack of information surrounding diagnosis and feedback regarding results has created a low desire to engage in attempting to understand the disorder in more depth as patients feel that their hypothyroidism seems to be well controlled with an annual blood test and LT4 treatment.

| Limitations
This article presents very preliminary data as the study was not designed to examine patients' experience of living with hypothyroidism so some aspects may not have been elicited. Data saturation was based on the objectives for the RCT so some issues may have been missed.
Patients whose recent TSH levels were within the local reference range were invited to participate in the RCT so it is possible that the experience of those with variable TSH levels may have been different.

| CONCLUSION
Though tentative this study provides a unique insight and first report of patient experience in older patients living with hypothyroidism. Our findings reveal a general lack of knowledge of the signs and symptoms of hypothyroidism and reasons for LT4 dose adjustment amongst this group. Older patients may not vocalise or may underplay any symptoms they experience when attending for review. Patients accept the medical decision to adjust LT4 doses and do not ask for explanations even though dose adjustments may not appear to chime with their understanding of hypothyroidism or the ageing process. This may affect compliance with LT4 medication and any future implementation of an age-related TSH reference range.
In seeking to understand dose changes patients search for advice mainly from family members or friends. The analysis of these findings against the HBM has provided guidance for future work with this age group. It is important that patients feel empowered to seek information from treating clinicians. Further research is also required to investigate the attitudes of clinicians towards patient education and their management of hypothyroidism in older patients. It would be useful to discover whether lack of knowledge about hypothyroidism is confined to this age group alone. A cross sectional study of different age groups to ascertain perceptions of hypothyroidism would be useful in understanding the type of patient education required.