Multiple sclerosis (MS) is a chronic and progressive illness, representing one of the most common causes of neurological disability in young adults. In Italy, MS patients are about 63,000, and 1,800 new patients are diagnosed every year. The MS onset often regards people aged between 20 and 30 years, and the prevalence is higher for women. Disease-modifying drugs (DMDs) have shown to be effective in reducing the frequency and severity of disease relapses in the most common form of MS, the Relapsing Remitting Multiple Sclerosis (RRMS). In the last years, the appearance of new pharmacological therapies poses new challenges to the clinical neurologist: decisions on the most appropriate drug to choose for treating patients are increasingly influenced by the expected effectiveness of the treatment and by the risks related to its use. The decision to undergo the pharmacological treatments and to be compliant with it may be conditioned by several factors, such as the symptoms and patients’ awareness of the disease. Moreover, it is difficult to forecast the long term outcome of the disease, as well as the effect of the pharmacological treatment: both these factors are unpredictable and may depend on the type of MS (relapsing vs progressive), the individual’s characteristics and the symptoms experienced over time. All these circumstances have an impact on patients’ Health Related Quality of Life (HRQoL). For the present research, 121 patients with RRMS have been interviewed to gather information about their health conditions, the symptoms experienced, the information they received about the disease, their assessment of HRQoL, measured with the Visual Analogue Scale (VAS) and their perceptions of uncertainty in illness, assessed through the Mishel Uncertainty in Illness Scale (MUIS). Several econometric models have been run. A probit model has been estimated to evaluate compliance/adherence to the pharmacological treatment: here, the dependent variable is the patients’ answer to the question related to the regularity in following the treatment. Instead, a tobit model has been selected to analyze the HRQoL and the impact of various factors concerning patients’ health and uncertainty in illness. The evidences from this contribution allow to obtain a clear picture of some aspects concerning MS patients’ daily life and the uncertainty deriving from the illness state. The aspects considered differ from specific symptoms and disabilities, that have been often investigated in the relevant medical literature. It is crucial to consider the patients’ involvement and their leading roles in choosing the therapeutic strategy: patients should be guaranteed an effective follow up, looking at the aspects of communication and information, in order to favour their compliance/adherence and increase HRQoL. The analysis carried out presents a framework likely to be repeated for wider samples, identifying subgroups of patients according to their health conditions and the type of drug assumed. Monitoring patients’ health conditions along time allows to assess the long term compliance with pharmacological treatment and the impact of the disease on HRQoL in the long run.

MS patients’ awareness of disease and compliance with pharmacological treatments: issues related to uncertainty in illness and health related quality of life

Gitto, Lara
Primo
2016-01-01

Abstract

Multiple sclerosis (MS) is a chronic and progressive illness, representing one of the most common causes of neurological disability in young adults. In Italy, MS patients are about 63,000, and 1,800 new patients are diagnosed every year. The MS onset often regards people aged between 20 and 30 years, and the prevalence is higher for women. Disease-modifying drugs (DMDs) have shown to be effective in reducing the frequency and severity of disease relapses in the most common form of MS, the Relapsing Remitting Multiple Sclerosis (RRMS). In the last years, the appearance of new pharmacological therapies poses new challenges to the clinical neurologist: decisions on the most appropriate drug to choose for treating patients are increasingly influenced by the expected effectiveness of the treatment and by the risks related to its use. The decision to undergo the pharmacological treatments and to be compliant with it may be conditioned by several factors, such as the symptoms and patients’ awareness of the disease. Moreover, it is difficult to forecast the long term outcome of the disease, as well as the effect of the pharmacological treatment: both these factors are unpredictable and may depend on the type of MS (relapsing vs progressive), the individual’s characteristics and the symptoms experienced over time. All these circumstances have an impact on patients’ Health Related Quality of Life (HRQoL). For the present research, 121 patients with RRMS have been interviewed to gather information about their health conditions, the symptoms experienced, the information they received about the disease, their assessment of HRQoL, measured with the Visual Analogue Scale (VAS) and their perceptions of uncertainty in illness, assessed through the Mishel Uncertainty in Illness Scale (MUIS). Several econometric models have been run. A probit model has been estimated to evaluate compliance/adherence to the pharmacological treatment: here, the dependent variable is the patients’ answer to the question related to the regularity in following the treatment. Instead, a tobit model has been selected to analyze the HRQoL and the impact of various factors concerning patients’ health and uncertainty in illness. The evidences from this contribution allow to obtain a clear picture of some aspects concerning MS patients’ daily life and the uncertainty deriving from the illness state. The aspects considered differ from specific symptoms and disabilities, that have been often investigated in the relevant medical literature. It is crucial to consider the patients’ involvement and their leading roles in choosing the therapeutic strategy: patients should be guaranteed an effective follow up, looking at the aspects of communication and information, in order to favour their compliance/adherence and increase HRQoL. The analysis carried out presents a framework likely to be repeated for wider samples, identifying subgroups of patients according to their health conditions and the type of drug assumed. Monitoring patients’ health conditions along time allows to assess the long term compliance with pharmacological treatment and the impact of the disease on HRQoL in the long run.
2016
978-1-63485-835-9
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11570/3163088
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