Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers

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Abstract

We performed a cross-sectional study aimed to address the quality of life (QoL) and putative associated variables in amyotrophic lateral sclerosis (ALS) patients and their respective caregivers, using both health-related (WHOQOL-BREF) and individual (SEIQoL-DW) QoL instruments. Further, we sought to investigate concordance within patient–caregiver pairs for ratings of respective QoL. Thirty-seven patient–caregiver pairs were included in the study. QoL was rated low by both patients and caregivers, and there was no significant difference between them on scores of overall QoL, even if caregivers showed higher scores on the physical and psychological WHOQOL-BREF domains compared to patients. No correlation could be found between QoL of both patients and caregivers and all the examined socio-demographic variables. Moreover, concordance between patients and respective caregivers was low for ratings of QoL, suggesting that their QoL is not necessarily interrelated, and that these couples do not actually represent a unique psychological entity. Interestingly, physical dysfunction, measured with the ALS-FRS, was not significantly correlated with caregivers' individual QoL scores. The most frequently nominated SEIQoL-DW cues were related to health (physical and psychological) and family for both patients and caregivers, and there was high agreement for the choice of areas important for subject's QoL. Interestingly, patients and caregivers who endorsed spirituality as a significant domain reported better QoL. Our study confirms that ALS has a negative impact on QoL in both patients and caregivers. However, caregivers who present lower QoL levels are not always those who have to look after the most physically or psychologically impaired patients. Major attention on QoL issues of both patients and caregivers, family status, and health perception, integrated with the medical evaluation, could lead to a better understanding of the problems related to the caregiving experience, and could help couples dealing with this life-threatening disease.

Introduction

Amyotrophic lateral sclerosis (ALS) is a relentless neurodegenerative disorder affecting the voluntary motor system, of unknown aetiology. Its prevalence is about three to five in 100,000 individuals and generally the onset is in the fifth or sixth decade of life. The progressive decline of muscular function results in paralysis, speech and swallowing disabilities, and, ultimately, respiratory failure leading to death within 2 to 5 years [1].

As the disease progresses, ALS patients require assistance with mobility, eating, dressing, and nursing care; assistance is often provided by a family member who assumes the role of primary caregiver [2].

Despite the evidence that caregivers of ALS patients bear a greater physical and emotional burden than caregivers of other chronic diseases, because of the more rapid progression of ALS [2], there are relatively few studies on their health status, quality of life (QoL), and psychological well being.

Jenkinson et al. [3] reported that ALS has substantial adverse effects upon QoL of patients and caregivers [3]. Krivickas et al. [2] suggested that ALS has a negative impact for caregivers only [4], while Trail et al. [5] found no significant difference between ALS patients and caregivers on QoL scores [5]. Krivickas et al. [2] reported that primary caregivers feel either physically or psychologically unwell [2] and Gelinas et al. [6] found that caregivers were heavily burdened and their outside activities were severely limited [6].

Moreover, there have been only few attempts to identify specific clinical or demographic factors associated to QoL within ALS patients and caregivers.

We, then, performed a cross-sectional study aimed to evaluate the QoL and putative associate variables in both ALS patients and caregivers. Further, we sought to investigate concordance within patient–caregiver pairs for ratings of respective QoL.

Section snippets

Patients and caregivers

Thirty-seven patients, followed at the ALS Clinic of the University of Palermo, participated in the study. At the time of examination, all cases were diagnosed as probable or definite ALS, according to the El-Escorial WFN revised criteria [7]. Demographic and clinical characteristics of the patients are summarized in Table 1. One patient could not be included in the study because of concurrent frontotemporal dementia. No patient had other serious illness other than ALS. At the time of the

SEIQoL-DW

The SEIQoL-DW index score (SIS) was low in both ALS patients and their caregivers, even if caregivers tended to score relatively higher: the median SIS was 45.5 (interquartile range: 27.3–66.6) for the patients, and 55.6 (interquartile range: 44.1–74.1) for the caregivers, and the difference was not statistically significant (p = 0.061) (Table 2).

Median SIS for the healthy spousal couples was 83.9 (interquartile range: 74.8–89.6), and it was higher than the median SIS for the ALS

Discussion

In the past few years, there has been a growing interest in exploring the caregiving experience, and the World Health Organization has defined addressing the needs of family and family caregivers as one of the primary objectives of palliative care [18]. In particular, family caregivers are key figures in ALS care, since they provide the bulk of support to patients and play a central role in clinical decision-making. Notwithstanding, there are only few studies that addressed QoL issues related

Acknowledgements

The authors gratefully acknowledge the ALS patients and their caregivers who made this study possible.

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