AimsKnowledge of patient preferences is vital for delivering optimal healthcare. This study uses utility measurement to assess the preferences of heart failure (HF) patients regarding quality of life or longevity. The utility approach represents the perspective of a patient; facilitates the combination of mortality, morbidity, and treatment regimen into a single score; and makes it possible to compare the effects of different interventions in healthcare.Methods and resultsPatient preferences of 100 patients with HF were assessed in interviews using the time trade-off (TTO) approach. Health-related quality of life (HR-QoL) was assessed with the EQ-5D and the Minnesota Living with Heart Failure Questionnaire (MLHFQ). Patients' own estimation of life expectancy was assessed with a visual analogue scale (VAS). Of the 100 patients (mean age 70 ± 9 years; 71% male), 61% attach more weight to quality of life over longevity; while 9% and 14% were willing to trade 6 and 12 months, respectively, for perfect health and attach more weight to quality of life. Patients willing to trade time had a significantly higher level of NT-proBNP and reported significantly more dyspnoea during exertion. Predictors of willingness to trade time were higher NT-proBNP and lower EQ VAS.ConclusionThe majority of HF patients attach more weight to quality of life over longevity. There was no difference between both groups with respect to life expectancy described by the patients. These insights enable open and personalized discussions of patients' preferences in treatment and care decisions, and could guide the future development of more patient-centred care. © 2013 Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2013. For permissions please email: journals.permissions@oup.com.
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Objective: To explore the nature and extent of possible residual complaints among Dutch hypothyroid patients using thyroid replacement therapy, we initiated a comprehensive study measuring health-related quality of life (QoL), daily functioning, and hypothyroidism-associated symptoms in patients and control persons. Methods: An online survey measuring thyroid-specific QoL (ThyPRO), daily functioning, and hypothyroidismassociated symptoms (ThySHI) was distributed among treated hypothyroid patients and control individuals. The advertising text was formulated in an open-ended manner. Patients also provided their most recent thyroid blood values and their thyroid medication. Results: There was a large-sized impairment of QoL (Cohen’s d = 1.04, +93 % ThyPRO score) in hypothyroid patients on thyroid replacement therapy (n = 1195) as compared to controls (n = 236). Daily functioning was significantly reduced i.e., general health (-38 %), problems with vigorous- (+64 %) and moderate activities (+77 %). Almost 80 % of patients reported having complaints despite thyroid medication and in-range thyroid blood values, with 75 % expressing a desire for improved treatment options for hypothyroidism (total n = 1194). Hypothyroid patients experienced 2.8 times more intense hypothyroidism-associated symptoms than controls (n = 865, n = 203 resp). Patients’ median reported serum concentrations were: TSH 0.90 mU/L, FT4 17.0 pmol/L, and FT3 2.67 pmol/L, with 52 % having low T3 levels (<3.1 pmol/L). The QoL was not found to be related to age, sex, BMI, menopausal status, stress, serum thyroid parameters, the origin and duration of hypothyroidism, the type of thyroid medication, or the LT4 dose used. Conclusions: Our study revealed major reductions in quality of life and daily functioning, and nearly three times more intense hypothyroidism-associated symptoms in treated hypothyroid patients as compared to controls, despite treatment and largely in-range serum TSH/FT4 concentrations. The QoL was not associated with serum thyroid parameters. We recommend future research into the origin of persisting complaints and the development of improved treatment modalities for hypothyroidism.
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Background: Hypothyroidism is a common endocrine disorder and the standard treatment is replacement therapy with levothyroxine (LT4). Although many hypothyroid patients improve upon treatment with LT4, a proportion seems to experience residual hypothyroid complaints despite treatment, even when plasma TSH and FT4 are within reference ranges. Methods: Using an on-line survey we investigated 1. the health-related quality of life (QoL) (ThyPRO), 2. the activities of daily living (SF-36), 3. hypothyroid-related symptoms (ThySHI) in diagnosed, treated hypothyroid patients (>18 years, treated >6 months) and control persons (without thyroid disease, >18 years). In patients, the time course of symptoms from diagnosis until 3 years was asked (retrospectively, ThySHI). Patients and control persons were recruited by e-mails from patient organizations, posters in pharmacies and health centers and Twitter/Facebook. For data analysis (ThyPRO, 0-100 scale, t-test; daily functioning, 1-5 scale and ThySHI 0-3 scale, Mann-Whitney; time course symptoms, Friedmann-Dunnett; confounding factors, ANCOVA) IBM SPSS 24 was used. Results: In this cohort consisted of 1667 patients (mean duration of illness 12.2 ± SD 9.9 years) and 275 controls. Treated hypothyroid patients had 1. a significant decrease in health-related QoL and all domains (fatigue, vitality, cognition, anxiety, depressivity, emotional susceptibility, social life, daily life), as compared to controls (mean total QoL 39.9 vs 19.1 resp. and all domains p<0.001), 2. Significantly more impairment with activities of daily living (p<0.001), and 3. significantly higher scores for symptoms related to hypothyroidism, as compared to control persons (all p<0.01). Symptoms generally decreased after 3 years of treatment, with fatigue, reduce daily functioning, coldness, muscle pain/cramps and being overweight as the most intense residual complaints. Many patients (78.5%) reported having complaints despite taking thyroid medication and reported not feeling well (77.8%) while their blood values were within range. TSH level, age, gender and duration of illness did not significantly affect total QoL, whereas the M3 comorbidity index did. Desiccated thyroid hormone users (9.4%) had a significantly better mean total QoL than LT4 users (90.5%) (36,0 vs 40.6, p=0.003). Conclusions: Persistent complaints, such as reduced health-related quality of life, reduced daily functioning, and residual hypothyroid related symptoms, are common in this group of hypothyroid patients despite replacement therapy. Caregivers should be aware that persistent complaints can be present in treated hypothyroid patients, despite following current guidelines, and that these remaining symptoms may affect their quality of life and daily functioning.
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