Advanced search
Publication Cover
Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 22, 2021 - Issue 7-8
Submit an article Journal homepage
2,397
Views
7
CrossRef citations to date
0
Altmetric
Clinical

Patient reported outcomes in ALS: characteristics of the self-entry ALS Functional Rating Scale-revised and the Activities-specific Balance Confidence Scale

Sheena Chew1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;3 Biogen, Cambridge, MA, USAORCID Iconhttps://orcid.org/0000-0002-7159-8818
ORCID Icon,
Katherine M. Burke1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Ella Collins1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Reagan Church1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Sabrina Paganoni1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;4 Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Harvard Medical School, Boston, MA, USA and
,
Katharine Nicholson1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Suma Babu1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Jennifer B. Scalia1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Fabiola De Marchi1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Amy L. Ellrodt1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
Lidia M. V. R. Moura2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
,
James Chan5 Massachusetts General Hospital, Biostatistics Center, Harvard Medical School, Boston, MA, USA
&
James D. Berry1 Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA;2 Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USACorrespondence[email protected]
 show all
Pages 467-477 | Received 08 Oct 2020, Accepted 22 Feb 2021, Published online: 26 Mar 2021

References

  • Bensimon G, Lacomblez L, Meininger V. A controlled trial of riluzole in amyotrophic lateral sclerosis. ALS/Riluzole Study Group. N Engl J Med. 1994;330:585–91.
  • Abe K, Aoki M, Tsuji S, Itoyama Y, Sobue G, Togo M, et al. Safety and efficacy of edaravone in well defined patients with amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled trial. Lancet Neurol. 2017;16:505–12.
  • De Marchi F, Berry JD, Chan J, Caldwell S, Ellrodt A, Scalia J, et al. Patient reported outcome measures (PROMs) in amyotrophic lateral sclerosis. J Neurol. 2020;267:1754–9.
  • Rutkove SB, Qi K, Shelton K, Liss J, Berisha V, Shefner JM. ALS longitudinal studies with frequent data collection at home: study design and baseline data. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:61–7.
  • Maier A, Holm T, Wicks P, Steinfurth L, Linke P, Munch C, et al. Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial. Amyotroph Lateral Scler. 2012;13:210–6.
  • Wicks P, Vaughan TE, Massagli MP, Heywood J. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol. 2011;29:411–4.
  • Bakker LA, Schroder CD, Tan HHG, Vugts S, van Eijk RPA, van Es MA, et al. Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R. J Neurol Neurosurg Psychiatry. 2020;91:75–81.
  • Berry JD, Paganoni S, Carlson K, Burke K, Weber H, Staples P, et al. Design and results of a smartphone-based digital phenotyping study to quantify ALS progression. Ann Clin Transl Neurol. 2019;6:873–81.
  • Powell LE, Myers AM. The Activities-specific Balance Confidence (ABC) Scale. J Gerontol A Biol Sci Med Sci. 1995;50A:M28–M34.
  • Montes J, Levy G, Albert S, Kaufmann P, Buchsbaum R, Gordon PH, et al. Development and evaluation of a self-administered version of the ALSFRS-R. Neurology. 2006;67:1294–6.
  • Myers AM, Powell LE, Maki BE, Holliday PJ, Brawley LR, Sherk W. Psychological indicators of balance confidence: relationship to actual and perceived abilities. J Gerontol A Biol Sci Med Sci. 1996;51:M37–M43.
  • Myers AM, Fletcher PC, Myers AH, Sherk W. Discriminative and evaluative properties of the activities-specific balance confidence (ABC) scale. J Gerontol A Biol Sci Med Sci. 1998;53:M287–M94.
  • Lajoie Y, Gallagher SP. Predicting falls within the elderly community: comparison of postural sway, reaction time, the Berg Balance Scale and the Activities-specific Balance Confidence (ABC) scale for comparing fallers and non-fallers. Arch Gerontol Geriatr. 2004;38:11–26.
  • Cleary K, Skornyakov E. Predicting falls in community dwelling older adults using the Activities-specific Balance Confidence Scale. Arch Gerontol Geriatr. 2017;72:142–5.
  • Mak MK, Pang MY. Balance confidence and functional mobility are independently associated with falls in people with Parkinson's disease. J Neurol. 2009;256:742–9.
  • Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS Functional Rating Scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169:13–21.
  • R Development Core Team. R: a language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing; 2019.
  • Montes J, Cheng B, Diamond B, Doorish C, Mitsumoto H, Gordon PH. The Timed Up and Go test: predicting falls in ALS. Amyotroph Lateral Scler. 2007;8:292–5.
  • Schell WE, Mar VS, Da Silva CP. Correlation of falls in patients with amyotrophic lateral sclerosis with objective measures of balance, strength, and spasticity. NeuroRehabilitation. 2019;44:85–93.

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.