Abstract
ObjectiveTo systematically identify and appraise evidence on associations between psychological factors (moods, beliefs, personality) and Health-related QoL (HRQoL) and/or global QoL in patients with Amyotrophic Lateral Sclerosis (ALS).MethodsA systematic review was conducted in several online databases (PsycINFO, EMBASE, PubMed and CINAHL) up to October 2015. Articles were included if they reported associations between psychological factors (moods, beliefs and personality) and HRQoL and/or global QoL in an ALS population. The search was limited to empirical studies, published in English, which provided quantitative data. The methodological quality of the included articles was assessed.ResultsIn total, 22 studies were included. Mood was investigated in 14 studies, beliefs in 11 studies and personality in one study. Fifteen different psychological factors were extracted and assessed using 24 different measures. Twelve different QoL measures were used in the selected studies, subdivided into seven different HRQoL measures and five different global QoL measures. Higher levels of anxiety and depression appeared to be related to a poorer HRQoL, whereas a higher level of religiosity seemed to be associated with better global QoL. No conclusive associations were found for confusion-bewilderment (mood), spirituality, mindfulness, coping styles, hopelessness, perception of burden, cognitive appraisal (beliefs), neuroticism, extraversion, openness, agreeableness and conscientiousness (personality), due to insufficient or inconsistent evidence. Religiosity and spirituality appeared to become more positively associated over time.ConclusionsOur results suggest that higher levels of anxiety and depression are related to a poorer HRQoL, whereas higher levels of religiosity appeared to be related to better global QoL. Associations might change during the disease course. This review supports the importance of psychological factors with regard to ALS care. Further research is needed to supplement the available evidence and to investigate how psychological factors can be modified to improve QoL.Review registration numberPROSPERO 2015:CRD42015027303Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-016-0507-6) contains supplementary material, which is available to authorized users.
Highlights
Amyotrophic Lateral Sclerosis (ALS) is a fatal, progressive, neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex
After removing 153 duplicates, a further 830 articles were removed after screening title and abstract
In two studies [16, 26], the same cohort data was used; we included the study by Bremer because of a higher quality assessment
Summary
Amyotrophic Lateral Sclerosis (ALS) is a fatal, progressive, neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex. Patients suffer progressive wasting and weakness of limb, bulbar and respiratory muscles, leading to inability to speak and swallow, respiratory failure and complete paralysis [1, 2]. Patients eventually die due to respiratory failure within three to five years after symptom onset [1]. The incidence of ALS shows little variation in Western countries, ranging from 1.5 to 2.7 per 100,000 person-years, [5] with an estimated lifetime risk of 1 in 400 [6]. Optimal treatment is based on symptom management and optimizing Quality of Life (QoL)
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