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Original Articles

Cognitive behavioural therapy and quality of life in psychologically distressed patients with amyotrophic lateral sclerosis and their caregivers: Results of a prematurely stopped randomized controlled trial

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Pages 309-315 | Received 14 Apr 2014, Accepted 08 Mar 2015, Published online: 18 Jun 2015
 

Abstract

Our objective was to compare the effects of cognitive behavioural therapy (CBT) and usual care (UC) on quality of life (QoL) in psychologically distressed patients with ALS and their caregivers. We conducted a multicentre randomized controlled trial (RCT). In 16 weeks, patient-carer pairs received five to 10 CBT sessions plus usual care (UC) or UC alone. Outcome measures were SF-36 Mental Component Summary (MCS), ALSAQ-40 Emotional Functioning (EF), Hospital Anxiety and Depression Scale (HADS) and Caregiver Strain Index (CSI). Assessments took place at baseline, four, seven and 10 months. The steering committee decided to stop the trial prematurely and analyse the data due to: 1) slow recruitment (15 patients over 42 months); and 2) the low demand for joint patient-carer CBT sessions. Caregivers, however, expressed an unanticipated demand for individual psychological support. Patients’ ALSAQ-40-EF and caregivers’ SF-36-MCS were significantly better in CBT than UC (p < 0.05). CSI was significantly lower in the CBT than the UC (p < 0.05). In conclusion, CBT might be beneficial to patients and caregivers. The stringent eligibility criteria limited participation rate and consequently the generalizability of results. Future studies should further examine the impact of CBT interventions for patients with ALS and their caregivers.

Acknowledgements

The authors are grateful to the patients and formal caregivers for their efforts and time. They thank the psychologists (van Eeden, Hoekstra-Slikkerveer and Vos) and the rehabilitation physicians (Groothuis, Grupstra and van Vliet).

The authors acknowledge funding of this study from The Netherlands Organization for Health Research and Development (ZonMw) and the Prinses Beatrix Fonds.

Declaration of interest: none.

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