Determinants and mediating mechanisms of quality of life and disease-specific symptoms among thyroid cancer patients: the design of the WaTCh study.

BACKGROUND: Thyroid cancer (TC) patients are understudied but appear to be at risk for poor physical and psychosocial outcomes. Knowledge of the course and determinants of these deteriorated outcomes is lacking. Furthermore, little is known about mediating biological mechanisms. OBJECTIVES: The WaTCh-study aims to; 1. Examine the course of physical and psychosocial outcomes. 2. Examine the association of demographic, environmental, clinical, physiological, and personality characteristics to those outcomes. In other words, who is at risk? 3. Reveal the association of mediating biological mechanisms (inflammation, kynurenine pathway) with poor physical and psychological outcomes. In other words, why is a person at risk? DESIGN AND METHODS: Newly diagnosed TC patients from 13 Dutch hospitals will be invited. Data collection will take place before treatment, and at 6, 12 and 24 months after diagnosis. Sociodemographic and clinical information is available from the Netherlands Cancer Registry. Patients fill-out validated questionnaires at each time-point to assess quality of life, TC-specific symptoms, physical activity, anxiety, depression, health care use, and employment. Patients are asked to donate blood three times to assess inflammation and kynurenine pathway. Optionally, at each occasion, patients can use a weighing scale with bioelectrical impedance analysis (BIA) system to assess body composition; can register food intake using an online food diary; and can wear an activity tracker to assess physical activity and sleep duration/quality. Representative Dutch normative data on the studied physical and psychosocial outcomes is already available. IMPACT: WaTCh will reveal the course of physical and psychosocial outcomes among TC patients over time and answers the question who is at risk for poor outcomes, and why. This knowledge can be used to provide personalized information, to improve screening, to develop and provide tailored treatment strategies and supportive care, to optimize outcomes, and ultimately increase the number of TC survivors that live in good health.

Are illness perceptions, beliefs about medicines and Type D personality associated with medication adherence among thyroid cancer survivors? A study from the population-based PROFILES registry.

Objective: To examine self-reported medication adherence and its association with illness perceptions, beliefs about medication and personality among thyroid cancer survivors. Methods: Individuals diagnosed with thyroid cancer between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received our survey; 86% (n = 306) responded.Results: Many patients reported that they never forgot taking their medicines (n = 168; 56%), never altered the dose (n = 258; 88%), never stopped taking them (n = 291; 99%), never decided to miss a dose (n = 284; 97%) and never took less than instructed (n = 286; 97%). Fifty-two percent were classified as nonadherent; of which 14% intentional nonadherent only, 70% were nonintentional nonadherent only and 16% were both intentional and nonintentional nonadherent. Nonadherers were younger, more highly educated, more often employed, had a lower stage at diagnosis, and less often reported ≥2 comorbid conditions than adherers. Furthermore, their illness affected them more emotionally and they more often reported that their life would be impossible without their medicine. Logistic regression models showed that higher age, lower education and lower perceived necessity of medication was associated with better adherence while beliefs about medication, illness perceptions, and personality were not associated with adherence.Conclusions: Despite lifelong dependence on supplement therapy, 52% of thyroid cancer survivors were nonadherent.

Fatigue among short- and long-term thyroid cancer survivors: results from the population-based PROFILES registry.

BACKGROUND: The aims of this study were (i) to obtain insight into the prevalence of fatigue among short- and long-term thyroid cancer (TC) survivors, by comparing a sample of TC survivors with an age- and sex-matched normative population, and (ii) to investigate which demographic, clinical, and TC-specific health-related quality of life (HRQoL) characteristics were associated with fatigue. METHODS: All patients found to have TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a cross-sectional survey on fatigue (Fatigue Assessment Scale), TC-specific HRQoL (THYCA-QoL), and psychological distress (Hospital Anxiety and Depression Scale). The fatigue scores were compared with those of an age- and sex-matched normative population (n=530). Multiple logistic regression analyses were conducted to investigate the independent associations between clinical and demographic characteristics, TC-specific HRQoL, and psychological distress with fatigue. RESULTS: Eighty-six percent (n=306) responded. TC survivors were more often classified as fatigued or very fatigued (short-term <5 years: 43%; long-term 5-10 years: 44%; long-term 10-15 years: 47%; long-term >15 years: 39%) compared to the normative population (25%; p<0.001). Anxiety (odds ratio (OR) 1.15, 95% confidence interval [CI] 1.03-1.28) and depression (OR 1.43 [CI 1.22-1.68]) were associated with fatigue, as was also the case for TC-specific neuromuscular (OR 1.03 [CI 1.01-1.06]), concentration (OR 1.03 [CI 1.01-1.06]), and psychological TC-specific HRQoL (OR 1.06 [CI 1.02-1.10]). CONCLUSION: Short- and long-term TC survivors report higher levels of fatigue than an age- and sex-matched normative population do. Both TC-specific HRQoL and psychological distress were associated with fatigue.

Health-related quality of life and disease specific symptoms in long-term thyroid cancer survivors: a study from the population-based PROFILES registry.

BACKGROUND: Given the longevity of thyroid cancer patients, any impairment in health-related quality of life (HRQoL) during the follow-up period is of considerable concern. Therefore, the first aim of this study was to assess (thyroid cancer specific) HRQoL among long-term thyroid cancer survivors and to compare this with the HRQoL of an age- and sex-matched normative population. Secondly, our aim was to investigate which clinical and socio-demographic characteristics and thyroid cancer specific problems were associated with HRQoL. MATERIAL AND METHODS: All patients diagnosed with thyroid cancer between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on HRQoL (EORTC QLQ-C30) and disease-specific symptoms (THYCA-QoL). The scores were compared with age- and sex-matched cancer free controls (n = 800). A series of multiple linear regression analyses were conducted to investigate the independent associations between clinical, socio-demographic and thyroid cancer specific factors with HRQoL. RESULTS: A total of 306 patients (86%) responded to the invitation. Thyroid cancer survivors had significantly lower scores on physical, role, emotional, cognitive and social functioning (p < 0.001) compared to the normative population after adjusting for comorbidities. Sympathetic problems [feeling chilly (52%), hot flushes (40%)], neuromuscular problems [cramp legs (43%) and pain joints/muscles (64%)] and abrupt attacks of fatigue (50%) were the most often reported thyroid cancer specific complaints. Thyroid cancer specific neuromuscular, concentration, sympathetic and psychological problems explained 41-58% of the variance in HRQoL. Clinical and socio-demographic factors explained a small part of the variance in (thyroid cancer specific) HRQoL (1-27%). CONCLUSION: Long-term thyroid cancer survivors experience more symptoms and deteriorated HRQoL compared to the normative population. Thyroid cancer specific neuromuscular, sympathetic, concentration and psychological symptoms are stronger associated with HRQoL than clinical and socio-demographic factors alone. Awareness of these specific determinants of HRQoL could help health care practitioners to provide better supportive care.

Health-related quality of life among thyroid cancer survivors: a systematic review.

BACKGROUND: Treatment and follow-up care procedures of thyroid cancer impose great challenges on survivors and could potentially affect their health-related quality of life (HRQoL). METHODS: Two authors systematically reviewed the available literature on HRQoL of thyroid cancer survivors. A PubMed literature search for original articles published until February 2011 was performed. Twenty-seven articles, published between 1997 and 2010, which met the predefined inclusion criteria, were subjected to a quality checklist. RESULTS: All selected studies, except one, were of adequate or good quality. Surgery had a negative impact on short-term HRQoL scores, but these scores returned to preoperational levels when time since surgery increased. Long-term thyroid hormone therapy (levothyroxine) can lead to abnormalities like hyperthyroidism. HRQoL was most affected during thyroid hormone withdrawal for radioiodine remnant ablation or follow-up procedures. The use of recombinant human thyroid stimulating hormone instead of hormone withdrawal leads to considerable improvements in HRQoL during follow-up testing. The results for (long-term) survivors were contradicting. While most (long-term) survivors report some specific long-lasting health problems, some studies found a lower HRQoL for thyroid cancer survivors compared with a healthy population or other reference groups, whereas other studies found similar HRQoL levels. CONCLUSION: This review indicates that thyroid cancer survivors generally have a similar or slightly worse HRQoL compared with the normative population; however, they report some specific medical problems after cancer treatment and follow-up tests, which have a direct negative impact on their current HRQoL and could affect their long-term HRQoL. Specific longitudinal survivorship studies are lacking.