Quality of Life Research

, Volume 27, Issue 4, pp 845–856 | Cite as

The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis

  • Ammarah Y. Soofi
  • Vanina Dal Bello-Haas
  • Michelle E. Kho
  • Lori Letts



The nature of amyotrophic lateral sclerosis (ALS) is progressive and degenerative, thus influencing individuals physically, emotionally, and socially. A broad review of qualitative studies that describe the personal experiences of people with ALS with physiotherapy, occupational therapy and speech and language pathology interventions, and how those affect QoL is warranted.


This study synthesizes qualitative research regarding the potential that rehabilitation interventions have to maintain and/or improve QoL from the perspective of people with ALS.


The SPIDER search strategy was applied and five articles met inclusion criteria addressing the perceived impact of rehabilitation on QoL for individuals with ALS.


Four themes emerged: the concept of control; adapting interventions to disease stage; struggles with interventions; and barriers between healthcare providers and patients.


Rehabilitation interventions were perceived to have potential to support QoL by people with ALS. Advantages and limitations of rehabilitation services within this population were identified.


Amyotrophic lateral sclerosis (ALS) Physiotherapy (PT) Occupational therapy (OT) Speech and language pathology (SLP) Quality of life (QoL) Rehabilitation 



Michelle Kho is funded by a Canada Research Chair in Critical Care Rehabilitation and Knowledge Translation.


  1. 1.
    Francis, K., Bach, J., & DeLisa, J. (1999). Evaluation and rehabilitation of patients with adult motor neuron disease. Archives of Physical Medicine and Rehabilitation. Scholar
  2. 2.
    Lewis, M., & Rushanan, S. (2007). The role of physical therapy and occupational therapy in the treatment of Amyotrophic Lateral Sclerosis. NeuroRehabilitation, 22, 451–461.PubMedGoogle Scholar
  3. 3.
    Mitsumoto, H., & Bene, M. (2000). Improving the quality of life for people with ALS: The challenge ahead. Amyotrophic Lateral Sclerosis. Scholar
  4. 4.
    Ng, L., Khan, F., & Mathers, S. (2009). Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database of Systematic Reviews. Scholar
  5. 5.
    World Health Organization (WHO). (2005). Disability, including prevention, management and rehabilitation. Geneve: World Health Assembly.Google Scholar
  6. 6.
    Foley, G., Timonen, V., & Hardiman, O. (2014). Exerting control and adapting to loss in amyotrophic lateral sclerosis. Social Science & Medicine. Scholar
  7. 7.
    Hughes, R., Sinha, A., Higginson, I., Down, K., & Leigh, P. (2005). Living with motor neurone disease: Lives, experiences of services and suggestions for change. Health and Social Care in the Community. Scholar
  8. 8.
    Murphy, J. (2004). I prefer contact this close: Perceptions of AAC by people with motor neurone disease and their communication partners. Augmentative and Alternative Communication. Scholar
  9. 9.
    McNaughton, D., Light, J., & Groszyk, L. (2001). Don’t give up: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication. Scholar
  10. 10.
    Elsworth, C., Dawes, H., & Sackley, C., et al. (2009). A study of perceived facilitators to physical activity in neurological conditions. International Journal of Therapy Rehabilitation. Scholar
  11. 11.
    Cooke, A., Smith, D., & Booth, A. (2012). Beyond PICO: The SPIDER tool for qualitative evidence synthesis. Qualitative Health Research. Scholar
  12. 12.
    Mikulic, M., DeLisa, J. A., & Miller, R. M. (1979). Rehabilitate the patient with ALS? Rehabilitation nursing.
  13. 13.
    Bondas, T., & Hall, E. O. (2007). Challenges in approaching metasynthesis research. Qualitative Health Research. Scholar
  14. 14.
    Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement. Scholar
  15. 15.
    Letts, L., Wilkins, S., Law, M., Stewart, D., Bosch, J., & Westmorland, M. (2007). Critical review form—Qualitative studies (version 2.0). Resource document. McMaster University. qualguidelines_version2.0.pdf.
  16. 16.
    Henderson, R., & Rheault, W. (2004). Appraising and incorporating qualitative research in evidence-based practice. Journal of Physical Therapy Education, 18(3), 35–45.CrossRefGoogle Scholar
  17. 17.
    Guba, E. G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Resources Information Center Annual Review Paper, 29, 75–91.Google Scholar
  18. 18.
    Sandelowski, M., & Barroso, J. (2002). Finding the findings in qualitative studies. Journal of Nursing Scholarship. Scholar
  19. 19.
    Noblit, G., & Hare, R. (1988). Meta-Ethnography. Newbury Park, CA: Sage Publications.CrossRefGoogle Scholar
  20. 20.
    Tong, A., Flemming, K., McInnes, E., Oliver, S., & Craig, J. (2012). Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology. Scholar
  21. 21.
    Bello-Haas, D. V. (2002). A framework for rehabilitation in degenerative diseases: Planning care and maximizing quality of life. Neurology Report. Google Scholar
  22. 22.
    Swash, M. (2010). Coping with motor neuron disease: How do people adapt to the devastating reality? Journal of Neurology, Neurosurgery & Psychiatry. Scholar
  23. 23.
    Feinstein, A., & Cicchetti, D. (1990). High Agreement Low Kappa I. Problems of two paradoxes. Journal of Clinical Epidemiology. Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2017

Authors and Affiliations

  • Ammarah Y. Soofi
    • 1
  • Vanina Dal Bello-Haas
    • 1
  • Michelle E. Kho
    • 1
  • Lori Letts
    • 1
  1. 1.School of Rehabilitation SciencesMcMaster UniversityHamiltonCanada

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