Quality of Life Perspectives Within the Dyad of Persons With Amyotrophic Lateral Sclerosis and Caregivers

PURPOSE: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that results in muscle atrophy, loss of voluntary muscle control, changes in reflexes, speech and swallowing difficulties, and cognitive difficulties. These symptoms negatively impact persons with ALS (PALS) in their ability to perform tasks independently (Reed, 2014). As the disease progresses, more reliance on a person’s caregiver (CG) is inevitable. The emotional and physical support the CG provides daily can lead to feelings of depression (Rabkin, Albert, Rowland, & Mitsumoto, 2009). Research has shown that burden among CGs is high, impacting their perspective of PALS’ quality of life (QOL). When this is coupled with the highly variable QOL perspectives within PALS, it can create areas of miscommunication between the CG–PALS dyad (Calvo et al., 2011).

Determining the patterns of QOL differences and/or similarities between and within PALS and CG will facilitate enhanced communication within the dyad, potentially leading to more effective therapy solutions (Tramon, Bongioanni, Di Bernardo, Davin, & Rossi, 2012). The purpose of this research is to compare QOL perspectives between PALS and their CG to identify differences and/or similarities between their perspectives. Identifying differences between QOL perspectives is vital to providing care that is holistic and optimal for both the PALS and CG, further enhancing QOL for both.

DESIGN: Thirty PALS–CG dyads who received treatment at an ALS clinic were asked to participate during regularly scheduled clinic day. Inclusion criteria were PALS and CG who attend the ALS clinic. Exclusion criteria were PALS with a confirmed diagnosis of frontotemporal lobe dementia, PALS without a CG present, and non-English-speaking dyads.

METHOD: The PALS and CG were administered the SF–12v2 Health Survey twice: once to assess their perspective of their own QOL and a second time for their perception of the other member of the pair’s QOL. The SF–12v2 Health Survey is a standardized, gold-standard assessment that measures functional health and well-being from a person’s perspective.

RESULTS: Results of the multivariate analysis of variance indicate that there was a significant effect of group ratings on the physical health composite QOL score and the mental health composite QOL score, F(6, 232) = 11.64, p < .05. A post hoc analysis of variance (ANOVA) for physical health composite score was significant, F(3, 116) = 25.434, p < .05. A further Tukey post hoc test revealed that all of the comparisons were significant (p < .05) except PALS self-assessment versus CG assessment of PALS (p = .901) and PALS assessment of CG versus CG self-assessment (p = .995). A post hoc ANOVA for the mental composite score was significant, F(3, 116) = 2.828, p < .05. Additional Tukey post hoc comparisons revealed that the only two group means that were significantly different were PALS assessment of CG versus CG assessment of PALS (p = .05).

CONCLUSION: Based on the results, a statistically significant difference was found between the physical and mental perspectives of QOL within the dyad. For clinicians, it is vital to be sensitive to the differences in how the PALS and CG view QOL within their dyad. Further research is needed to better understand the impact of these differences in the PALS–CG partnership and on the therapeutic relationship with the occupational therapist.

References

Calvo, A., Moglia, C., Ilardi, A., Cammarosano, S., Gallo, S., Canosa, A., & Chio, A. (2011). Religiousness is positively associated with quality of life of ALS caregivers. Amyotrophic Lateral Sclerosis, 12, 168–171. https://doi.org/10.3109/17482968.2011.560947

Rabkin, J. G., Albert, S. M., Rowland, L. P., & Mitsumoto, H. (2009). How common is depression among ALS caregivers? A longitudinal study. Amyotrophic Lateral Sclerosis, 10, 448–455. https://doi.org/10.1080/17482960802459889

Reed, K. (2014). Nervous systems disorders: amyotrophic lateral sclerosis. In R. R. Zukas (Ed.), Quick reference to occupational therapy (pp. 301–306). Gaithersburg, MD: Aspen Publishers.

Tramon, F., Bongioanni, P., Di Bernardo, C., Davin, S., & Rossi, B. (2012). Quality of life of patients with amyotrophic lateral sclerosis. Psychology, Health and Medicine, 17, 621–628. https://doi.org/10.1080/13548506.2011.651149