Abstract
Patients with Graves' disease (GD) not only need appropriate medical care, but they also need to be cared for. The aim of this review is to examine the literature on GD patient needs, expectations, perceptions, and quality of life. We will also present methods for patient care, define gaps in knowledge, and suggest factors that can be introduced into the regular care of GD patients. Patient information, teamwork with thyroid/contact nurses, education of personnel and patients, quality of life measurements, and the formation of a rehabilitation program have enough evidence to be implemented into regular care. However, visualizing patient needs through person-centered care requires further evaluation in GD patients before being implemented in routine care. We conclude that considerable improvement in nursing can be achieved in relation to GD.
Introduction
There are five concepts of central importance with respect to person-centered care (PCC) (1, 2): patient needs, patient expectations, patient perception, patient care, and patient quality of life (QoL). According to the World Health Organization, health-related QoL is defined as the physical, psychological, and social domains of health, as perceived by the patient, which are influenced by a patient's experiences, beliefs, and expectations of their disease and treatment (3, 4). In other words, patient experience may be defined as "…the sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care" (5). Consequently, an agreement between the care given to patients and patient needs influences QoL. In Sweden, it is stated in Patient Law (2014:821) that patients shall participate in their own healthcare. The person who provides information must ensure that the recipient has understood the content and that the information is adapted to age, maturity, experience, language, and other individual conditions. It is not until patients are well informed, fully included in their situation, and influence their own care that high-quality healthcare can be delivered (6, 7).
Previously, the outcome of diseases used to be mostly assessed by biological and physiological measures (8). While these measures provide important information for the clinician, they often correlate poorly with functional health perceived by patients (9, 10). When the treatment goal is to improve patient function and well-being rather than prolong life, the patient's perception of their care is central and an important part of QoL measurement (11) and may need specific supportive actions. The patient's QoL and their medical treatment are equally important (12).
Within the Swedish national system for knowledge-driven management in healthcare, mapping the care process is a general tool to better adapt patient care to the needs of patients and identify areas for improvements. The care of Graves' disease (GD) is exemplified in Figure 1, showing the onset of the disease process. Our purpose is to overview the literature on patient care and needs in GD and illustrate how to improve the work process in patient care using the strategic tool system-based driver and association of health outcomes in relation to available Resources (SHOR) diagram that may have implications on four main outcomes: mortality, morbidity, QoL, and patient experience (Fig. 2) (13). In this review, we will address the GD patient experience of healthcare, the importance of addressing patient fears and pre-morbid psychological conditions, patient need for adequate information, and evaluation of QoL in GD. Thereafter, we will suggest what may be implemented into GD healthcare and define the gaps in knowledge for further research.
Mapping of the care process is a tool to better adapt patient care to the needs of patients and localize areas for improvement. The first part of the process for patients with Graves' disease is illustrated where patient needs and difficulties in healthcare are highlighted.
Citation: European Thyroid Journal 12, 3; 10.1530/ETJ-23-0010
The strategic tool system-based driver and association of health outcomes in relation to available Resources (SHOR diagram) is a way to improve long-term health outcomes in clinical practice to realize connections between efforts from healthcare that may have implications on the four main outcomes: mortality, morbidity, quality of life, and patient experiences. It should be read from right to the left starting with the end results and the intermediate variables that affect the outcome variables. In the next step, the process variables that affect the intermediate variables are identified.
Citation: European Thyroid Journal 12, 3; 10.1530/ETJ-23-0010
GD patient experience of healthcare
Mapping patient experience at the onset of the disease and during treatment is important to optimize care and achieve a better QoL for patients; however, the literature on this topic is limited. A New Zealand study (14) has examined the level of patient preference in determining which type of treatment to proceed with. The most important factors for choosing therapy between antithyroid drugs (ATDs), surgery, or radioactive iodine (RAI) were whether the treatment affected activities of daily living, concerns about the use of RAI, possibility of depression or anxiety, and doctor's recommendations. Satisfaction was high with all three treatment types. In another study (15), only 10% of patients reported some hesitation and 3% major hesitation in recommending the treatment given to them. Furthermore, others report differences between patients and physicians regarding which treatment they prefer (16). Patients were more worried about RAI than surgery as compared to physicians. It is important to be aware of the different preferences of patients and physicians that may occur, but through listening and providing the right conditions, such as right information, and providing a conducive clinical environment, it should be possible to arrive at a joint decision on treatment.
More studies are needed on how to understand patient needs, how to best support GD patients during both the short- and long-term period of the disease course, how to deliver information in the best way, why some patients do not recover as expected, how patients who do not recover fully should be cared for, and how nurses, dieticians, psychologists, occupational therapists, and physiotherapists can improve the situation to end up with a better disease experience and QoL.
Importance of addressing patient fears and pre-morbid psychological conditions
When interviewing patients with GD, ambiguous signs of the disease appear problematic (17). Hyperthyroid patients felt that they had to negotiate their sickness. Most often, medical tests failed to validate their illness experiences, which pressured patients to work despite feeling ill. They often hid their disabilities in fear of work-related consequences. Instead of taking sick leave, they were using holidays or flextime to compensate for time lost at work. Patients expressed a longing for acknowledgment from significant others. In other interviews, patients with hyperthyroidism reported a loss of physical and emotional control. Patients showed concern about cosmetic changes in their eyes from Graves' orbitopathy (GO) and its connection to self-image, body image, and social avoidance (17). One of the most common fears was the risk of blindness that would have an effect on their responsibilities, ability to work, and capability to support their families (18). There appears to be significant variability in individual perception of living with a disfiguring condition (19). Patients seem to give a higher rate of severity than endocrinologists when comparing the perception of appearance (20), underlining the importance in considering the patient's perspective.
It is also important to consider the intensity of symptom perception, which is influenced by the individual's pre-morbid function with respect to physical, psychological, and societal function (21). The ability to cope differs between individuals and depends on their resources (22); it seems to be the psychological processes behind it rather than objective measurements that explain the variability of coping (23, 24). Depressive coping, trivializing the condition, and higher levels of emotional stress were associated with worse QoL (25).
It is unclear how much fear increases the need for healthcare, information, and security. It is also unclear whether addressing fear and working in a supportive manner can decrease healthcare consumption and improve outcomes of psychiatric morbidity and QoL in GD patients. Outcomes are, however, improved in thyroid cancer patients through psychological support (26). Generally, sickness absence resulting from mental symptoms is often long-lasting (27) and return to work is a complex process where self-efficacy, a positive attitude, and support are most relevant (28). The lack of mental energy and endurance over time reduces the ability to cope with rehabilitation, to spend time with family and friends, and to be involved in society in terms of both work and leisure (29). In burn-out patients, increased support with an eHealth intervention improved self-efficacy and reduced burn-out symptoms (30).
GO patients have an even higher risk of work disability than other thyroid patients during the first year after diagnosis (31). A study by Ponto and colleagues shows that patients with GO suffer from emotional stress and occupational impairment. These patients therefore require more preventive care and rapid rehabilitation (32). Also, studies report that 15–20% of patients with GO report that they have received psychotherapy (32, 33).
Can PCC address individual fears and difficulties better than conventional care in GD patients? PCC is based on ethical principles and aims to involve the patient as an active partner in his or her care, treatment, and decision-making process (34). PCC will identify and use the patient’s own resources, capabilities, and needs (35) and has proven effective for patient-related outcomes in other conditions (36). Also, the effect of different coping strategies in GD patients needs to be determined as positive coping strategies are associated with a lower frequency of recurrent GD (37). If coping strategies can be improved, it may result in a more beneficial outcome.
Patients’ need for adequate information
Increased patient knowledge of a disease results in better insight into the condition, reduces anxiety, and increases compliance with treatment (38). Patients may search online but it is difficult to obtain appropriate and readable information (39). However, in one study (40), the knowledge level was similar among GD patients with and without GO and was not influenced by disease duration, educational level, language, or demography.
Moreover, 3 years after total thyroidectomy, GD patients expressed that they had wanted more information before the surgery, such as the healthcare staff explaining the disease in detail, and that they had received information about possible post-operative side effects such as weight gain, fatigue, and changes in mood (41). The authors also emphasized the patient's own assessment of the risks after having received adequate information. Obtaining accurate informed consent is necessary according to the Montgomery ruling in the UK (42) and under Swedish patient law. According to patients, there is a huge need for repeated information during the disease course.
Evaluation of QoL in GD patients
QoL questionnaires are divided into those that are generic or disease-specific. Generic instruments are designed to measure the most important general concepts of QoL. This makes them applicable across diseases and different cohorts; however, questions are often too general or broad to detect clinically important changes for a specific disease (43) because they include items of low relevance for the actual patient group (44). On the other hand, disease-specific questionnaires include concerns of high relevance to the disease and are often designed to detect changes that occur over time.
There are two well-known, validated thyroid-specific QoL questionnaires for GD patients: thyroid-specific patient-reported outcome measure (ThyPRO) (45, 46, 47) for thyroid patients in general and the GO-QoL (48) for GD patients with orbitopathy. While developing the ThyPRO questionnaire (45, 46), it was noted that endocrine experts focused on disease-specific issues, while patients focused on broader non-specific psychological aspects of the disease, thus highlighting that healthcare personnel may need to broaden their view on thyroid-related problems faced by their patients. GO-QoL is short and simple with two disease-specific scales, one referring to the visual consequences and the other referring to appearance perception (48). Both these questionnaires are used today in research, having good reliability and validity (47, 49).
While euthyroidism is usually achieved rapidly under treatment, recovery of well-being is delayed for months in many patients and a negative impact on QoL is noted in the short term (50, 51, 52, 53). Approximately 20% of patients experience reduced QoL for as long as 1 year after treatment (50, 54) and many are not fully recovered after 3 years (55). A randomized, prospective study has shown that GD patients still had decreased QoL 17–21 years later compared to the general population (56). Some will never regain full pre-morbid health (51, 52, 57, 58). The reasons are unclear but studies on this are ongoing (59).
Not surprisingly, QoL is even more reduced in patients who develop GO (12, 32, 33, 38, 60, 61, 62, 63, 64, 65, 66, 67). Also, after GO treatment, 61% of the patients reported that the appearance of their eyes had not normalized, 51% thought the appearance of their eyes was abnormal, and 37% were dissatisfied with the appearance of their eyes (68). After orbital decompression (19), although well-being was improved in most patients, dissatisfaction was linked to unanticipated effects of surgical care, recovery, or appearance. Hence, this data may be used to improve the information for patients by offering realistic estimates of expected QoL impairments and treatment effects. Caregivers should also be aware of the way patients form expectations (69). However, other factors may also contribute to the impaired QoL such as the disease is often misdiagnosed (58% of the time) (70), there is a delay in diagnosis (average time 9 months) (71), and access to joint thyroid-eye clinics is limited (25% of patients) (70), even though patients seen in such clinics report greater satisfaction with their care. In addition, the uncertainty of the future may also play a role and impaired QoL may have secondary psychological effects (21).
Research is, however, lacking in how these QoL instruments can be applied in healthcare and how they can be used effectively. Just recently, remaining symptoms such as tiredness, depression, and anxiety had been identified as mental fatigue in GD patients using a validated scale, the mental fatigue scale (MFS) (54), which has been previously used in patients with stroke and traumatic brain injury (72, 73). It consists of 15 questions covering symptoms such as the rapid drain of mental energy on mental activity, impaired concentration, long recovery time, and diurnal variation (74). A total score ≥10.5 indicates deviation from normality (72). A validated English translation is found at www.brainfatigue.se. The MFS has also been evaluated in hypothyroid patients with a good correlation to work ability (75). It is unclear whether mental fatigue is similar to ‘brain fog’, which has been recently reviewed for hypothyroidism (76). The MFS would well cover the symptoms that were reported by the patients (77).
Suggestions for implementation into GD healthcare and definition of gaps of knowledge for future research
Validate patient symptoms
To relieve ambiguity and shame, healthcare professionals may play an important role in validating diffuse and hidden symptoms as relevant aspects of living with a thyroid disorder (Fig. 3). According to an invited patient and public involvement meeting, experts, patients, and the public stated that psychological intervention was an unmet and unprioritized need for patients and public participants, especially in GO (78). This is particularly important as patients diagnosed with GD have an increased risk of suicide (79, 80), which is significantly higher in patients with GO, and the risk persists after adjustments for pre-existing somatic and psychiatric disease. A clear association is reported between hyperthyroidism and attention deficit hyperactivity disorder, adjustment disorder, anxiety, bipolar disorder, and depression on one hand, and suicidality on the other. Healthcare personnel should acknowledge psychiatric symptoms, provide treatment and follow-up, and screen patients for the risk of suicide (81).
Ways to validate symptoms and support patients with Graves' disease.
Citation: European Thyroid Journal 12, 3; 10.1530/ETJ-23-0010
Patient organizations provide support and mediate contact with other patients with a similar diagnosis and their relatives. As a patient representative, patient organizations also have a valuable role in providing healthcare knowledge on what it means to live with thyroid disease. The role of patient organizations is also an influential force, pointing out shortcomings in healthcare and working for better care. Organizations are also important providers of information and knowledge, including what rights patients and their relatives have for support.
Support patients more
Patient care may benefit from counseling, support groups, a regular port of call to a nurse specialist, and even disease-specific psychiatric care when necessary (Fig. 4). In fact, the Amsterdam Declaration states that the treatment of GD patients with GO should include aspects that improve patient experience and QoL (82).
Aid tools that can facilitate life if symptoms remain after Graves' disease.
Citation: European Thyroid Journal 12, 3; 10.1530/ETJ-23-0010
Coping with a disease relates to having the diagnosis of GD and/or GO as well as handling facial changes and facilitating societal interaction (21, 83). However, although there are several coping methods to help patients with disfiguring conditions (84, 85, 86), none have been evaluated in GD or GO. Hence, this is still considered a gap in knowledge.
Moreover, PCC has proven beneficial in many conditions, for example, chronic obstructive pulmonary disease, chronic heart failure, and mental disorders such as depression and anxiety (30, 36). It is fundamental to listen to the patient's narrative and, together, create a health plan that includes the patient's goals, how the goals are to be achieved, and what are the responsibilities of the patient and healthcare personnel, respectively. In PCC, the resources of the patient are characterized and any need for support is determined and regularly updated. Using PCC, the resources of society are used more efficiently, and patients feel more secure and more involved in their care. Studies on PCC have shown increased self-efficacy, shorter hospital stays, and cost savings (36). Studies on PCC in GD are still lacking and is also, therefore, considered a gap of knowledge.
However, implementing a thyroid/contact nurse has proven cost-effective in other diseases (26, 87, 88, 89) and may improve QoL and how patients experience outcome by increasing accessibility within healthcare, patient security, and increasing the possibility of patients being involved in one’s own care (Fig. 2 and 3). The nurse, patient, and physician as well as any other relevant persons should form a team to improve healthcare. The responsibility of the thyroid/contact nurse is also to coordinate healthcare, inform about the healthcare situation, mediate contacts, and be the contact person for the patient (90, 91). In the national guideline for hyperthyroidism in Sweden, there is a recommendation of thyroid/contact nurses to this patient group to increase security and strengthened opportunities to be involved in one’s own care (91). Therefore, we suggest that GD patients with or without GO should be given a thyroid/contact nurse in the more intensive phases of the disease course.
In general, physical activity promotes well-being and is cost-effective. In a retrospective, non-randomized study (92), exercise reduced fatigue, promoted disease remission, and reduced the relapse rate in euthyroid GD. A mechanism for this may be that exercise reduces stress (93) and less stress positively correlates with thyroid-stimulating hormone receptor antibody levels and thyroid volume (94). Also, about two-thirds of GD patients with GO perceived that psychological stress worsened GO, although there is no evidence for this in the literature (40). Supporting patients being physically active once euthyroidism has been regained may be beneficial for QoL and patient experiences, but there is a lack of knowledge on the effect of physical activity in GD patients.
Institute a rehabilitation process for GD patients in need
Rehabilitation addresses the impact of a health condition on a person's everyday life, by optimizing their functioning and reducing their experience of disability (95). Indeed, GD is to be defined as a condition with persistent symptomatology, in some cases, regarding both mental fatigue and disabling eye complaints. Additional mental suffering with anxiety and depression can develop when life drastically changes and does not return to normal. Although medication is not currently available in practice, limited research shows that mental fatigue can be alleviated for patients who had suffered a stroke or traumatic brain injury with medication (96, 97, 98), mindfulness, or cognitive behavioral therapy (99, 100, 101), while no such studies so far are found for endocrine disorders. Systematic analyses show that mindfulness can be helpful in alleviating depression and anxiety (102, 103). Patients characterized by mental fatigue may get important information on how to manage it in daily life on the webpage https://brainfatigue.se/ However, there is still no research on the efficacy of such supporting interventions in GD patients. Optimizing non-medical, non-surgical ophthalmological treatment with prisms is a well-known therapy for improving double vision. Psychological support, aid tools with different glasses, computer filters, computer settings, light adjustments (Fig. 4), and ophthalmology pedagogues are beneficial in other diseases with similar symptomatology. However, evidence is lacking in GO. Rehabilitation together with multiprofessional teams to ensure that people can remain as independent as possible is rare. Rehabilitation depends on patient symptoms: we suggest implementation of a rehabilitation process for GD patients 3 months after diagnosis if the patient is still on sick leave for an indefinite period and in cases of disabling GO symptoms. A rehabilitation process has recently been proposed for hypothyroid patients (76).
Provide GD patients with more information that is accurate and readable
Healthcare needs to detect the areas where knowledge is insufficient and effectively target those needs with tailored educational efforts and readable materials with the aim of increasing safety, reducing anxiety, and avoiding misconceptions (Fig. 5). There also needs to be education for patients.
Ways to inform patients and relatives about Graves' disease.
Citation: European Thyroid Journal 12, 3; 10.1530/ETJ-23-0010
We recommend that such information materials are uniform for a country, are constructed to cover different needs, and can be given on different occasions (Fig. 5). For patients with visual difficulties, information should be presented in a way that facilitates patients with visual problems taking part by using an auditory approach. Improving information may increase compliance, improve adequate decision making, and benefit outcome and patient experience, as outlined in the SHOR diagram (Fig. 2).
Implementation of QoL measurements into routine healthcare
It is time to implement QoL measurements in pracdtical, everyday healthcare to detect those patients who need extra support and rehabilitation as well as to follow recovery individually. Disease-specific questionnaires may also be used to identify specific symptoms that need further evaluation. In a recent publication, key points to facilitate the implementation of QoL measurements into routine care were highlighted such as (104). It could be argued that QoL measurements may lead to frustration as there are limited therapies at hand; however, identification of symptoms and making them measurable is an important way to acknowledge the existence of symptoms that are not measurable through blood sampling (Fig. 2 and 3). In GD patients with GO, symptoms such as excessive lacrimation, photophobia, changes in refraction, and various degrees of dysmotility may escape objective measurement but may cause the patient significant visual dysfunction (21) and impact their vision-related daily functioning such as reading, watching TV, and driving (64, 105, 106). Similarly, orbital discomfort is common (25, 65, 107) and may have profound effects on QoL (65). Another example is that mental fatigue alone may be the major complaint and should not be mixed up with depression or anxiety as it can be treated separately (Birgitta Johansson, manuscript in preparation). Specifically, full or partial sick leave may be necessary for a long period of time and the patient needs to learn on how to manage in daily life (see https://brainfatigue.se/ ). QoL and the MFS measurement can be used to follow functional disability.
We suggest that three questionnaires are implemented into regular care: ThyPRO, GO-QoL, and MFS. Preferably, the questionnaire should be sent to patients electronically to be filled in at home and resubmitted to the thyroid/contact nurse for evaluation and further team discussions with the physician. ThyPRO may be measured in the initial course of GD, after 6 and 12 months, and before and 6 months after termination of ATDs, surgery, or RAI. GO-QoL may be filled in at the onset of GD, at the onset of GO, every 6 months in the first year, and thereafter yearly as necessary. We recommend that the MFS should be completed in parallel with QoL measurements. To further facilitate the ThyPRO questionnaire, a short-form variant with preserved validity has been developed (108). It is also valuable to know that a difference of 6 points on one or both subscales in GO-QoL may be noted by patients as beneficial with important changes in daily functioning. A minimum of ≥10 points compared to before invasive therapies, such as orbital decompression, is needed to see an important clinical difference (62, 109). Moreover, disease-specific QoL questionnaires may also be an important quality indicator within regular healthcare to appropriately address these outcomes.
National guidelines as a pre-requisite for harmonized care
Based on experiences and traditions, treatment strategies and care may differ within a country. To harmonize care, national guidelines are pivotal. Is medical advice the only thing you expect from a guideline? Looking into international, national, and regional guidelines in our field, the answer is yes. The Swedish national system for knowledge-driven management in healthcare provides a different view and requires patient involvement in national and regional task forces to include all issues of importance for patients. This may, per se, promote a better outcome concerning morbidity, mortality, QoL, and patient experience. Three patients, representing patient organizations in Sweden, were included in our national guideline task force together with nurses, physicians, and physicists. These patients are also co-authors of this paper together with nurses and physicians. The patients' mission through participation was to provide their individual and collective perspectives. In the context of hyperthyroidism, variables such as information, individualization, approaching fears, aid tools, rehabilitation, structuring healthcare, and QoL instruments so that patients are always met with competence became important. In addition to medical issues, our national guidelines (91) have chapters on nursing, long-term consequences and rehabilitation, patient information, lists of priorities, and gap analyses (scientific and structural).
Taking these guidelines to the regional level was not only to incorporate them into regional medical guidelines but also to improve the education of personnel, create thyroid/contact nurses, create patient and relative education, and form a rehabilitation program. These issues were those that were expected to create the largest benefit for patients. This prioritization was performed in a structured manner using a SHOR diagram to avoid an even larger disparity in healthcare services contrary to its intention (Fig. 2). The SHOR diagram is a pedagogic tool to identify the variables with the highest impact on mortality, morbidity, and QoL (13), which is, according to the over-arching principle of Swedish healthcare governance, to provide as much care as possible for as many patients as possible given the available resources.
Conclusion
The limited evidence of research in patient experience and PCC for patients with hyperthyroidism and the low use of QoL questionnaires in ordinary healthcare were the incentives for this review. Going through this literature, we realize that it is time to introduce QoL measurements into national guidelines including the disease-specific QoL tools, ThyPRO and GO-QoL, as well as MFS. Awaiting research to complete the gaps of knowledge (Fig. 6) in a more patient-orientated way to evaluate healthcare, we must place a focus on how to promote a better QoL outcome by supportive actions besides medical treatment to create another cornerstone in establishing high-quality healthcare. Research within these areas is strongly warranted, not least by patients.
Identification of gaps in knowledge for the care of patients with Graves' disease.
Citation: European Thyroid Journal 12, 3; 10.1530/ETJ-23-0010
Declaration of interest
H F N has received lecture fees from Siemens Inc., IBSA, Oripharm, AstraZeneca, and Bristol-Mayer Squibb. The remaining authors declare no competing financial interests.
Funding
This work was financed by grants from the Swedish state under the agreement between the Swedish government and the county councils, the ALF-agreement (ALFGBG-717311, ALFGBG-790271), local FOU 2020 (VGFOUGSB-941595) 110 000SEK, the Healthcare Board, Region Västra Götaland (Hälso- och sjukvårdsstyrelsen), and The Knut and Alice Wallenberg Foundation. The University of Gothenburg, Sweden, is acknowledged for generous support.
Author contribution statement
H F N and A L wrote the manuscript. All authors contributed to the project concept, developed the figures, and approved the final version of the manuscript.
Acknowledgements
The authors thank Helen Abrahamsson for her involvement in the project and contributing important points of view, Verity Tolcher for her patience and commitment to designing these figures in review, and Sylvia Määttä for allowing us to use the figure about the patient's journey through the care chain and your good views on the design.
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