Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers and professionals

Abstract

Our objective was to explore the needs and value of case management according to patients with amyotrophic lateral sclerosis (ALS), their spousal caregivers, and health care professionals in the context of multidisciplinary ALS care. We undertook semi-structured interviews with 10 patients with ALS, their caregivers (n = 10) and their ALS health care professionals (n = 10), and held a focus group (n = 20). We transcribed the audio-taped interviews and analysed all data thematically. Participants indicated that in certain circumstances case management can have an added value. They identified factors for receptiveness to case management: adequacy of usual care, rate of disease progression, and degree of social network support and personal factors of patients and spousal caregivers. Participants valued the time for consultation, house calls and proactive approach of the case manager. Patients with ALS and caregivers appreciated emotional support, whereas professionals did not mention the importance of emotional support by the case manager.

In conclusion, ALS teams can consider implementation of valued aspects of case management (accessibility, ample time, proactive approach, emotional support) in the usual multidisciplinary ALS care. Additional support might be provided to patients with rapidly progressive disease course, passive coping style and small social network.

Key words::

• Case management
• ALS
• patients
• spousal caregivers
• needs
• qualitative study

Acknowledgements

We thank the patients, their caregivers and the professionals for sharing their stories and experiences with us. We also thank H. van den Oever and R. Janssens for their contribution to data collection and analysis.

Declaration of interest: This research was funded by the executing department of the Academic Medical Centre. The authors have no financial stake and/or business in any company that may be affected by the research reported in this manuscript. The authors alone are responsible for the content and writing of the paper.

Supplementary material available online

Supplementary Appendix 1–2.