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Clinical

Understanding the needs of people with ALS: a national survey of patients and caregivers

ORCID Icon, , , , , , , , , , , , & show all
Pages 355-363 | Received 12 Feb 2020, Accepted 20 Apr 2020, Published online: 12 May 2020

References

  • 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. J Neurol Sci. 1999;169:13–21.
  • Thakore NJ, Pioro EP. Laughter, crying and sadness in ALS. J Neurol Neurosurg Psychiatry. 2017;88:825–31.
  • Moore SR, Gresham LS, Bromberg MB, Kasarkis EJ, Smith RA. A self report measure of affective lability. J Neurol Neurosurg Psychiatry. 1997;63:89–93.
  • Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16:606–13.
  • Federal Drug Association. The voice of the patient: a series of reports from FDA’s patient-focused drug development initiative. FDA Web site. 2019. Available at: https://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm368342.htm. Accessed September 4, 2019.
  • Lapin B, Udeh B, Bautista JF, Katzan IL. Patient experience with patient-reported outcome measures in neurologic practice. Neurology 2018;91:e1135–51.
  • Young CA, Ealing J, McDermott C, Williams T, Al-Chalabi A, Majeed T, et al. The relationships between symptoms, disability, perceived health and quality of life in amyotrophic lateral sclerosis/motor neuron disease. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:317–27.
  • Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient-reported outcoming measures: a scoping review. Health Expect. 2017;20:11–23.
  • Vogt S, Petri S, Dengler R, Heinze H, Vielhaber S. Dyspnea in amyotrophic lateral sclerosis: rasche-based development and validation of a patient-reported outcome (DALS-15). J Pain Symptom Manage. 2018;56:736–45.
  • Galvin M, Corr B, Madden C, Mays I, McQuillan R, Timonen V, et al. Caregiving in ALS – a mixed methods approach to the study of burden. BMC Palliat Care. 2016;15:81.
  • Cipolletta S, Amicucci L. The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study. Int J Psychol. 2015;50:288–94.
  • O’Brien MR, Whitehead B, Jack BA, Mitchell JD. From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers – a qualitative study. Amyotroph Lateral Scler. 2011;12:97–104.
  • Burke T, Galvin M, Pint-Grau M, Lonergan K, Madden C, Mays I, et al. Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival. J Neurol. 2017;264:898–904.
  • Woolley S, York M, Moore D, Strutt A, Murphy J, Schulz P, et al. Detecting frontotemporal dysfunction in ALS: utility of the ALS cognitive behavioral screen (ALS-CBS). Amyotroph Lateral Scler. 2010;11:303–11.
  • Strong M. The syndromes of frontotemporal dysfunction in amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2008;9:323–38.
  • The ALS Association. IMPACT ALS – Investigation and Measuring Patient and Caregiver Trends About ALS. Harvard Dataverse V2 website. https://doi.org/10.7910/DVN/HG3MYW. 2019. Accessed Nov 12, 2019.
  • R Core Team. R: a language and environment for statistical computing. Vienna, Austria: R Foundation for Statistical Computing; 2019.
  • Mehta P, Kaye W, Raymond J, Punjani R, Larson T, Cohen T, et al. Prevalence of amyotrophic lateral sclerosis-United States, 2015. MMWR Morb Mortal Wkly Rep. 2018;67:1285–9.
  • Raheja D, Stephens HE, Lehman E, Walsh S, Yang C, Simmons Z. Patient-reported problematic symptoms in an ALS treatment trial. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:3–4.
  • Felgoise SH, Zaccheo V, Duff J, Simmons Z. Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:179–83.
  • Gibbons CJ, Thornton EW, Young CA. The patient experience of fatigue in motor neurone disease. Front Psychol. 2013;4:788.
  • Adelman EE, Albert SM, Rabkin JG, Del Bene ML, Tider T, O’Sullivan I. Disparities in perceptions of distress and burden in ALS pateints and family caregivers. Neurology 2004;62:1766–70.
  • Molassiotis A, Zheng Y, Denton-Cardew L, Swindell R, Brunton L. Symptoms experienced by cancer patients during the first year from diagnosis: patient and informal caregiver ratings and agreement. Pall Supp Care. 2010;8:313–24.
  • Stephens HE, Lehman E, Raheja D, Yang C, Walsh S, Mcarthur DB, et al. Pain in amyotrophic lateral sclersosis: patient and physician perspectives and practices. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:21–9.
  • Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology 1999;52:1434–40.
  • Chiò A, Canosa A, Gallo S, Moglia C, Ilardi A, Cammarosano S, et al. Pain in amyotrophic lateral sclerosis: a population based controlled study. Eur J Neurol. 2012;19:551–5.
  • Gibbons C, Pagnini F, Friede T, Young CA. Treatment of fatigue in amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2018;1:CD011005.
  • Nicholson K, Murphy A, McDonnell E, Shapiro J, Simpson E, Glass J, et al. Improving symptom management for people with amyotrophic lateral sclerosis. Muscle Nerve. 2018;57:20–4.
  • Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQOL: balancing physical and non-physical factors in assessing quality of life in ALS. Neurology. 2006;67:1659–64.
  • Simmons Z, Felgoise SH, Rodriquez JL, Walsh SM, Bremer BA, Stephens HE. Validation of a shorter ALS-specific quality of life instrument: the ALSSQOL-R. Neurology 2010;74:A177–A178.
  • Felgoise SH, Feinberg R, Stephens HE, Barkhaus P, Boylan K, Caress J, et al. Amyotrophic lateral sclerosis-specific quality of life-short form (ALSSQOL-SF): a brief, reliable, and valid version of the ALSSQOL-R. Muscle Nerve. 2018;58:646–54.
  • Jenkinson C, Fitzpatrick R, Brennan C, Bromberg M, Swash M. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: the ALSAQ-40. J Neurol. 1999;246:16–21.
  • Clarke S, Hickey A, O’Boyle C, Hardiman O. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res. 2001;10:149–58.
  • Goutman SA, Simmons Z. Symptom management in amyotrophic lateral sclerosis: we can do better. Muscle Nerve. 2018;57:1–3.
  • Ganzini L, Johnston WS, Silveira MJ. The final months of life in patients with ALS. Neurology 2002;59:428–31.
  • Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol. 2015;14:435–42.
  • Karam CY, Paganoni S, Joyce N, Carter GT, Bedlack R. Palliative care issues in amyotrophic lateral sclerosis: an evidenced-based review. Am J Hosp Palliat Care. 2016;33:84–92.
  • Blackhall LJ. Amyotrophic lateral sclerosis and palliative care: where we are, and the road ahead. Muscle Nerve. 2012;45:311–8.
  • Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, O Brannagain D, et al. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry. 2011;82:413–8.
  • Brizzi K, Paganoni S, Zehm A, De Marchi F, Berry JD. Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: observations from one center. Muscle Nerve. 2019;60:137–40.
  • Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001;248:612–6.
  • Paganoni S, Simmons Z. Telemedicine to innovate amyotrophic lateral sclerosis multidisciplinary care: the time has come. Muscle Nerve. 2019;59:3–5.
  • Geronimo A, Wright C, Morris A, Walsh S, Snyder B, Simmons Z. Incorporation of telehealth into a multidisciplinary ALS Clinic: feasibility and acceptability. Amyotroph Lateral Scler Frontotemporal Degener. 2017;18:555–61.
  • Van De Rijn M, Paganoni S, Levine-Weinberg M, Campbell K, Swartz Ellrodt A, Estrada J, et al. Experience with telemedicine in a multi-disciplinary ALS clinic. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:143–8.
  • Selkirk SM, Washington MO, McClellan F, Flynn B, Seton JM, Strozewski R. Delivering tertiary centre specialty care to ALS patients via telemedicine: a retrospective cohort analysis. Amyotroph Lateral Scler Frontotemporal Degener. 2017;18:324–32.
  • 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.
  • Bruletti G, Comini L, Scalvini S, Morini R, Luisa A, Paneroni M, et al. A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16:187–95.
  • Obermann M, Lyon M. Financial cost of amyotrophic lateral sclerosis: a case study. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16:54–7.
  • Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med. 2010;15:685–93.
  • Chio A, Gauthier A, Vignola A, Calvo A, Ghiglione P, Cavallo E, et al. Caregiver time use in ALS. Neurology. 2006;67:902–4.
  • Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62:271–9.
  • Murphy V, Felgoise SH, Walsh SM, Simmons Z. Problem solving skills predict quality of life and psychologic morbidity of ALS caregivers. Amyotroph Lateral Scler. 2009;10:147–53.
  • Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients’ behavioral changes than physical disability: a comparative study. BMC Neurol. 2012;12:156.
  • Chio A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients’ perception of being a burden in ALS. Neurology 2005;64:1780–2.
  • Eysenbach GE. Improving the quality of web surveys: the checklist for reporting results of internet E-surveys (CHERRIES). J Med Internet Res. 2004;6:e34.