Disparities in perceptions of distress and burden in ALS patients and family caregivers

Adelman, E. E.; Albert, S. M.; Rabkin, J. G.; Del Bene, M. L.; Tider, T.; O’Sullivan, I.

doi:10.1212/01.wnl.0000125180.04000.a4

Cited by 75Palliative Care and End-of-Life IssuesAmyotrophic Lateral Sclerosis ResearchNursing care and research

Disparities in perceptions of distress and burden in ALS patients and family caregivers

Adelman, E. E., Albert, S. M., Rabkin, J. G., Del Bene, M. L., Tider, T., O’Sullivan, I.·2004·Neurology

DOI 10.1212/01.wnl.0000125180.04000.a4

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Abstract

OBJECTIVES: To examine agreement between end-stage ALS patients and their family caregivers on indicators of physical and psychological status at the end of life. METHODS: Patient-caregiver pairs completed monthly interviews in patient homes. Patients were asked to rate their current pain, energy, suffering, depression, control over ALS, optimism, interest in hastened death, weariness from ALS, will to live, and how burdened they thought caregivers were on Visual Analogue Scales. Caregivers completed identical ratings of patients as well as a measure of their own burden. Both independently completed the ALS Functional Rating Scale-Rev. (ALSFRS-R), a measure of patient disability and physical function. RESULTS: A total of 69 patient-caregiver pairs participated. For measures of physical function, kappa ranged from 0.49 to 0.83, indicating moderate to excellent agreement. Patient and caregiver composite ALSFRS-R scores were highly correlated (r = 0.92, p < 0.001). Agreement between patients and caregivers was high for ratings of patient pain, control over ALS, optimism, and will to live, and this level of agreement remained high over multiple assessments. In pairwise analyses, caregivers rated patients as having less energy, greater suffering, and greater weariness than patients indicated for themselves, whereas patients rated caregivers as more burdened than caregivers reported for themselves. CONCLUSIONS: Caregivers can accurately report information about a patient's physical function at the end of life. However, patients and caregivers each overestimated the psychosocial impact of the disease on the other.

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Research has documented distress and burden experienced by MND family carers.
“Research has documented the distress and burden experienced by MND family carers [9-12]”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [10]
Family members caring for people with MND often encounter exceptional strain during caregiving due to the rapid and progressive nature of MND and its incapacitating effects.
“Family members caring for people with MND often encounter exceptional strain during the caregiving experience due to the rapid and progressive nature of MND coupled with the incapacitating effects of the disease.”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [10]

“Mini-mental state”
Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975) · Journal of Psychiatric Research · doi:10.1016/0022-3956(75)90026-6 · Cited by 88,282 · see citing works
Relatives of the Impaired Elderly: Correlates of Feelings of Burden
Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980) · The Gerontologist · doi:10.1093/geront/20.6.649 · Cited by 5,810 · see citing works
The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function
Cedarbaum, J. M., Stambler, N., Malta, E., Fuller, C., Hilt, D., Thurmond, B., & Nakanishi, A. (1999) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(99)00210-5 · Cited by 3,307 · see citing works
Assessing Quality of Life in Older Adults With Cognitive Impairment
Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002) · Psychosomatic Medicine · doi:10.1097/00006842-200205000-00016 · Cited by 1,381 · see citing works
The memorial delirium assessment scale
BREITBART, W. S., Rosenfeld, B. D., Roth, A. J. L., SMITH, M. J., Cohen, K., & Passik, S. D. (1997) · Journal of Pain and Symptom Management · doi:10.1016/s0885-3924(96)00316-8 · Cited by 851 · see citing works
Patient-proxy response comparability on measures of patient health and functional status
Magaziner, J., Simonsick, E. M., Kashner, T. M., & Hebel, J. R. (1988) · Journal of Clinical Epidemiology · doi:10.1016/0895-4356(88)90076-5 · Cited by 338 · see citing works
The Use of Proxy Respondents in Studies of Older Adults: Lessons, Challenges, and Opportunities
Neumann, P. J., Araki, S. S., & Gutterman, E. M. (2000) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.2000.tb03877.x · Cited by 272 · see citing works
Correlates of suffering in amyotrophic lateral sclerosis
Ganzini, L., Johnston, W. S., & Hoffman, W. F. (1999) · Neurology · doi:10.1212/wnl.52.7.1434 · Cited by 250 · see citing works
Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses
Sneeuw, K. C. A., Aaronson, N. K., Sprangers, M. A. G., Detmar, S. B., Wever, L., & Schornagel, J. H. (1999) · British Journal of Cancer · doi:10.1038/sj.bjc.6690655 · Cited by 183 · see citing works
A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options
Trail, M., Nelson, N. D., Van, J. N., Appel, S. H., & Lai, E. C. (2003) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(03)00003-0 · Cited by 176 · see citing works
Perceptions of patients' self-efficacy for managing pain and lung cancer symptoms correspondence between patients and family caregivers
Porter, L. S., Keefe, F. J., McBride, C. M., Pollak, K., Fish, L., & Garst, J. (2002) · Pain · doi:10.1016/s0304-3959(02)00042-8 · Cited by 102 · see citing works

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Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., Mutani, R., & Chiò, A. (2007) · Neurology · doi:10.1212/01.wnl.0000257093.53430.a8 · Cited by 256 · see citing works
Proxy Evaluation of Health-Related Quality of Life
Pickard, A. S., & Knight, S. J. (2005) · Medical Care · doi:10.1097/01.mlr.0000160419.27642.a8 · Cited by 255 · see citing works
Caregiver burden and patients’ perception of being a burden in ALS
Chiò, A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005) · Neurology · doi:10.1212/01.wnl.0000162034.06268.37 · Cited by 223 · see citing works
Determinants of Patient Satisfaction After Severe Lower-Extremity Injuries
O’Toole, R. V., Castillo, R. C., Pollak, A. N., MacKenzie, E. J., & Bosse, M. J. (2008) · Journal of Bone and Joint Surgery · doi:10.2106/jbjs.g.00492 · Cited by 174 · see citing works
Patient suffering and caregiver compassion: new opportunities for research, practice, and policy.
Schulz, R., Hebert, R. S., Dew, M. A., Brown, S. L., Scheier, M. F., Beach, S. R., Czaja, S. J., Martire, L. M., Coon, D., Langa, K. M., et al. (2007) · The Gerontologist · doi:10.1093/geront/47.1.4 · Cited by 163 · see citing works
Neurobehavioral symptoms in ALS are negatively related to caregivers’ burden and quality of life
Chiò, A., Vignola, A., Mastro, E., Giudici, A. D., Iazzolino, B., Calvo, A., Moglia, C., & Montuschi, A. (2010) · European Journal of Neurology · doi:10.1111/j.1468-1331.2010.03016.x · Cited by 157 · see citing works
Reliability generalization of responses by care providers to the Zarit Burden Interview
Bachner, Y. G., & O’Rourke, N. (2007) · Aging & Mental Health · doi:10.1080/13607860701529965 · Cited by 156 · see citing works
A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions
Aoun, S. M., Bentley, B., Funk, L., Toye, C., Grande, G., & Stajduhar, K. J. (2013) · Palliative Medicine · doi:10.1177/0269216312455729 · Cited by 152 · see citing works
Wish to die in end-stage ALS
Albert, S. M., Rabkin, J. G., Bene, M. L. D., Tider, T., O'Sullivan, I., Rowland, L. P., & Mitsumoto, H. (2005) · Neurology · doi:10.1212/01.wnl.0000168161.54833.bb · Cited by 142 · see citing works
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Pain in amyotrophic lateral sclerosis
Chiò, A., Mora, G., & Lauria, G. (2017) · The Lancet Neurology · doi:10.1016/s1474-4422(16)30358-1 · Cited by 134 · see citing works
Management Strategies for Patients With Amyotrophic Lateral Sclerosis From Diagnosis Through Death
Simmons, Z. (2005) · The Neurologist · doi:10.1097/01.nrl.0000178758.30374.34 · Cited by 127 · see citing works
Pain in amyotrophic lateral sclerosis: a population‐based controlled study
Chiò, A., Canosa, A., Gallo, S., Moglia, C., Ilardi, A., Cammarosano, S., Papurello, D. M., & Calvo, A. (2011) · European Journal of Neurology · doi:10.1111/j.1468-1331.2011.03540.x · Cited by 96 · see citing works
How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study
Sulmasy, D., Hughes, M. T., Thompson, R., Astrow, A., Terry, P., Kub, J., & Nolan, M. (2007) · Journal of The American Geriatrics Society · doi:10.1111/j.1532-5415.2007.01473.x · Cited by 100 · see citing works
Patient-Perceived Outcomes and Quality of Life in ALS
Simmons, Z. (2014) · Neurotherapeutics · doi:10.1007/s13311-014-0322-x · Cited by 92 · see citing works
A Review: Carers, MND and service provision
Mockford, C., Jenkinson, C., & Fitzpatrick, R. M. (2006) · Amyotrophic Lateral Sclerosis · doi:10.1080/14660820600601028 · Cited by 79 · see citing works
Longitudinal predictors of psychological distress and self-esteem in people with ALS
Goldstein, L. H., Atkins, L., Landau, S., Brown, R. G., & Leigh, P. N. (2006) · Neurology · doi:10.1212/01.wnl.0000242886.91786.47 · Cited by 75 · see citing works
Patients' Experiences of Being a Burden on Family in Terminal Illness
Johnson, J. O., Sulmasy, D. P., & Nolan, M. T. (2007) · Journal of Hospice and Palliative Nursing · doi:10.1097/01.njh.0000289656.91880.f2 · Cited by 67 · see citing works
Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease
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Evans, R. A., Catapano, M. S., Brooks, D., Goldstein, R. S., & Avendaño, M. A. (2012) · Canadian Respiratory Journal · doi:10.1155/2012/452898 · Cited by 61 · see citing works
Understanding the needs of people with ALS: a national survey of patients and caregivers
Brizzi, K. T., Bridges, J. F. P., Yersak, J. M., Balas, C., Thakur, N. M., Galvin, M., Hardiman, O. M., Heatwole, C. R., Ravits, J., Simmons, Z., et al. (2020) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2020.1760889 · Cited by 57 · see citing works
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“Research has documented the distress and burden experienced by MND family carers [9-12], and shown the close correlation of distress levels in patient-carer couples [13,14].”
Background
Patients’ self‐perceived burden, caregivers’ burden and quality of life for amyotrophic lateral sclerosis patients: a cross‐sectional study
Geng, D., Ou, R., Miao, X., Zhao, L., Wei, Q., Chen, X., Liang, Y., Shang, H., & Yang, R. (2016) · Journal of Clinical Nursing · doi:10.1111/jocn.13667 · Cited by 49 · see citing works
Impact of disease, cognitive and behavioural factors on caregiver outcome in amyotrophic lateral sclerosis
Watermeyer, T., Brown, R. G., Sidle, K. C. L., Oliver, D., Allen, C., Karlsson, J., Ellis, C., Shaw, C. E., Al‐Chalabi, A., & Goldstein, L. H. (2015) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2015.1051990 · Cited by 45 · see citing works
Caregiver bodywork: family members’ experiences of caring for a person with motor neurone disease
Ray, R., & Street, A. F. (2006) · Journal of Advanced Nursing · doi:10.1111/j.1365-2648.2006.03977.x · Cited by 43 · see citing works
“I hate being a burden”: The patient perspective on carer burden in amyotrophic lateral sclerosis
Foley, G., Timonen, V., & Hardiman, O. M. (2016) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2016.1143512 · Cited by 39 · see citing works
Non-motor symptoms in patients with amyotrophic lateral sclerosis: current state and future directions
Bjelica, B., Bartels, M.-B., Hesebeck‐Brinckmann, J., & Petri, S. (2024) · Journal of Neurology · doi:10.1007/s00415-024-12455-5 · Cited by 38 · see citing works
Assessing the Will to Live: A Scoping Review
Bornet, M.-A., Bernard, M., Jaques, C., Truchard, E. R., Borasio, G. D., & Jox, R. J. (2020) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2020.09.012 · Cited by 38 · see citing works
Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease
Ray, R., & Street, A. F. (2005) · Health & Social Care in the Community · doi:10.1111/j.1365-2524.2005.00586.x · Cited by 37 · see citing works
Surgeons and Their Patients Disagree Regarding Cosmetic and Overall Outcomes After Surgery for High-Energy Lower Extremity Trauma
O’Toole, R. V., Castillo, R. C., Pollak, A. N., MacKenzie, E. J., & Bosse, M. J. (2009) · Journal of Orthopaedic Trauma · doi:10.1097/bot.0b013e3181ab2c90 · Cited by 32 · see citing works
The Impact on the Family Carer of Motor Neurone Disease and Intervention with Noninvasive Ventilation
Baxter, S. K., Baird, W. O., Thompson, S., Bianchi, S. M., Walters, S. J., Lee, E. C., Ahmedzai, S. H., Proctor, A., Shaw, P. J., & McDermott, C. J. (2013) · Journal of Palliative Medicine · doi:10.1089/jpm.2013.0211 · Cited by 31 · see citing works
Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time
Olsson, A. G., Markhede, I., Strang, S. G., & Persson, L. (2009) · Acta Neurologica Scandinavica · doi:10.1111/j.1600-0404.2009.01191.x · Cited by 30 · see citing works
Depression and QOL in patients with ALS: how do self-ratings and ratings by relatives differ?
Grehl, T., Rupp, M., Budde, P., Tegenthoff, M., & Fangerau, H. (2010) · Quality of Life Research · doi:10.1007/s11136-010-9781-7 · Cited by 29 · see citing works
Pain in amyotrophic lateral sclerosis: a narrative review
Kwak, S. (2022) · Journal of Yeungnam Medical Science · doi:10.12701/jyms.2022.00332 · Cited by 28 · see citing works
Effects of dignity therapy on palliative patients’ family members: A systematic review
Grijó, L., Tojal, C., & Rêgo, F. M. P. D. S. (2021) · Palliative & Supportive Care · doi:10.1017/s147895152100033x · Cited by 24 · see citing works
Bilateral extraocular muscle metastasis from primary breast cancer
Peckham, E. L., Giblen, G., Kim, A. K., & Sirdofsky, M. (2005) · Neurology · doi:10.1212/01.wnl.0000156359.93206.99 · Cited by 23 · see citing works
The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management
Åkerblom, Y., Larsson, B., Zetterberg, L., & Åsenlöf, P. (2019) · Disability and Rehabilitation · doi:10.1080/09638288.2018.1555615 · Cited by 22 · see citing works
Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?
Bentley, B., Aoun, S. M., O’Connor, M., Breen, L. J., & Chochinov, H. M. (2012) · BMC Palliative Care · doi:10.1186/1472-684x-11-18 · Cited by 22 · see citing works
Shared genetic links between amyotrophic lateral sclerosis and obesity-related traits: a genome-wide association study
Li, C., Ou, R., Gu, X., Wei, Q., & Shang, H. (2021) · Neurobiology of Aging · doi:10.1016/j.neurobiolaging.2021.01.023 · Cited by 20 · see citing works
Drug therapy for pain in amyotrophic lateral sclerosis or motor neuron disease
Brettschneider, J., Kurent, J. E., Ludolph, A. C., & Mitchell, J. D. (2008) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd005226.pub2 · Cited by 20 · see citing works
Clinical features of pain in amyotrophic lateral sclerosis: A clinical challenge
Delpont, B., Beauvais, K., Jacquin, A., Alavoine, V., Rault, P., Blanc-Labarre, C., Osseby, G., Hervieu‐Bègue, M., Giroud, M., & Béjot, Y. (2018) · Revue Neurologique · doi:10.1016/j.neurol.2017.11.009 · Cited by 19 · see citing works
Amyotrophic Lateral Sclerosis and Pain: A Narrative Review from Pain Assessment to Therapy
Pota, V., Sansone, P., Sarno, S. D., Aurilio, C., Coppolino, F., Barbarisi, M., Barbato, F., Fiore, M., Cosenza, G., Passavanti, M. B., et al. (2024) · Behavioural Neurology · doi:10.1155/2024/1228194 · Cited by 17 · see citing works
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Yeo, C. J. J., & Simmons, Z. (2018) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2018.1425455 · Cited by 17 · see citing works
Cross-cultural variation in mental health at end of life in patients with ALS
Albert, S. M., Wasner, M., Tider, T., Drory, V. E., & Borasio, G. D. (2007) · Neurology · doi:10.1212/01.wnl.0000257820.96756.ea · Cited by 16 · see citing works
Self-citation
Developments in the assessment of non-motor disease progression in amyotrophic lateral sclerosis
Chiò, A., Canosa, A., Calvo, A., Moglia, C., Cicolin, A., & Mora, G. (2021) · Expert Review of Neurotherapeutics · doi:10.1080/14737175.2021.1984883 · Cited by 14 · see citing works
“Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers” by Lo Coco G, Lo Coco D, Cicero V, Oliveri A, Lo Verso G, Piccolo F, La Bella V
Simpson, E. P., & Appel, S. H. (2005) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2005.06.010 · Cited by 10 · see citing works
Depression and quality of life issues in patients with amyotrophic lateral sclerosis
Stromberg, S. F., & Weiss, D. B. (2006) · Current Treatment Options in Neurology · doi:10.1007/s11940-006-0030-x · Cited by 9 · see citing works
Ist die Beihilfe zum Suizid auf der Grundlage des Wunsches, anderen nicht zur Last zu fallen, ethisch gerechtfertigt?
Bleek, J. (2011) · Ethik in der Medizin · doi:10.1007/s00481-011-0148-6 · Cited by 8 · see citing works
Les troubles psychopathologiques et les mécanismes adaptatifs dans la sclérose latérale amyotrophique
Bungener, C. (2005) · Pratiques Psychologiques · doi:10.1016/j.prps.2005.09.001 · Cited by 8 · see citing works
Treatment and quality of life for people with ALS
Fletcher, J. J. (2004) · Neurology · doi:10.1212/wnl.62.10.e22 · Cited by 7 · see citing works
Resilienz bei Patienten mit amyotropher Lateralsklerose (ALS) und ihren Angehörigen
Wasner, M. (2008) · Schweizer Archiv für Neurologie und Psychiatrie · doi:10.4414/sanp.2008.02003 · Cited by 5 · see citing works
The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers
Mossa, A., Mayahara, M. P., Emezue, C., & Paun, O. (2023) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000997 · Cited by 5 · see citing works
Caregivers’ divergent perspectives on patients’ well-being and attitudes towards hastened death in Germany, Poland and Sweden
Andersen, P. M., Kuźma‐Kozakiewicz, M., Keller, J., Maksymowicz-Śliwińska, A., Barć, K., Nieporęcki, K., Finsel, J., Vázquez, C., Helczyk, O., Linse, K., et al. (2021) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2021.1936064 · Cited by 4 · see citing works
Remote versus face-to-face home-based exercise programme in people with amyotrophic lateral sclerosis: protocol for a randomised clinical trial
de Souza, A. A., da Silva, S. T., Pondofe, K. D. M., Resqueti, V., de Melo, L. P., Valentim, R. A. D. M., & Ribeiro, T. S. (2022) · BMJ Open · doi:10.1136/bmjopen-2021-056323 · Cited by 4 · see citing works
Patient satisfaction after lower limb replantation surgery for traumatic amputation - a qualitative study
Pei, Y., Ibrahim, Y., Wang, G., Sun, Y., Ding, B. T. K., & Xu, Q. (2024) · BMC Musculoskeletal Disorders · doi:10.1186/s12891-023-07076-4 · Cited by 3 · see citing works
Illness Cognitions in ALS: New Insights Into Clinical Management of Behavioural Symptoms
Caga, J., Devenney, E. M., Huynh, W., Zoing, M. C., Ahmed, R. M., & Kiernan, M. C. (2021) · Frontiers in Neurology · doi:10.3389/fneur.2021.740693 · Cited by 3 · see citing works
The Values and Preferences of People Living With Motor Neurone Disease (MND): A Systematic Review and Meta‐Analysis
Barker, T. H., Bulto, L. N., Holland, G., Schubert, C., Merlin, T., Karam, S. G., Wiercioch, W., Pollock, D., Stern, C., Beasley‐Hall, J., et al. (2026) · Clinical and Public Health Guidelines · doi:10.1002/gin2.70080 · Cited by 2 · see citing works
Évaluation psychologique et psychopathologique dans la SLA
Bungener, C. (2006) · Revue Neurologique · doi:10.1016/s0035-3787(06)75180-3 · Cited by 2 · see citing works
Correlations in health status between estimates of families of people with amyotrophic lateral sclerosis and estimates of staff
Ozanne, A., & Persson, L. (2012) · Palliative & Supportive Care · doi:10.1017/s1478951512000089 · Cited by 2 · see citing works
Peaceful dying among Canada’s elderly: An analysis of the Canadian Longitudinal Study on Aging
Aryal, K., Jones, A., Tanuseputro, P., Griffith, L. E., Hébert, P. C., Kirkland, S., Cook, D. J., & Costa, A. P. (2025) · PLoS ONE · doi:10.1371/journal.pone.0317014 · Cited by 1 · see citing works
EXECUTIVE DEFICITS IN AMYOTROPHIC LATERAL SCLEROSIS: EXAMINING THE CONSEQUENCES OF SELF-REGULATORY IMPAIRMENT ON QUALITY OF LIFE
Roach, A. R. (2010) · UKnowledge (University of Kentucky) · Cited by 1 · see citing works
Évaluation du handicap et de la qualité de vie dans la sclérose latérale amyotrophique
Danel-Brunaud, V. (2006) · Revue Neurologique · doi:10.1016/s0035-3787(06)75186-4 · Cited by 1 · see citing works
Pain in motor neurone disease
Clarke, J. (2016) · British Journal of Neuroscience Nursing · doi:10.12968/bjnn.2016.12.2.85 · Cited by 1 · see citing works
Caregiver Religiosity, Spirituality, and Positive Emotion as Predictors of Psychological Well-being in Amyotrophic Lateral Sclerosis Patients
Weller, A. B. (2009) · Digital Commons - PCOM (Philadelphia College of Osteopathic Medicine) · Cited by 1 · see citing works
Quality of Life and Depression in Patient-Giver Scenarios: Reference to Amyotrophic Lateral Sclerosis
Chiò, A. (2009) · Springer eBooks · doi:10.1007/978-0-387-78665-0_204 · Cited by 1 · see citing works
Betreuungsstrategien für schwerstgelähmte Patienten: empirische Ethik und neurowissenschaftliche Ansätze
Matuz, T. (2009) · Cited by 1 · see citing works
Care and decision-making at the end of life of ALS patients
Maessen, M. (2003) · Utrecht University Repository (Utrecht University)
The use of International Classification of Functioning, Disability and Health in motor neurone disease rehabilitation
Ng, L. (2011) · Minerva Access (University of Melbourne)
Living with ALS
Priest, A. (2015) · Canadian Medical Association Journal · doi:10.1503/cmaj.141517
Living with ALS Perspectives of patients and next of kin
Olsson, A. G. (2010) · Gothenburg University Publications Electronic Archive (Gothenburg University)
Sclerosi Laterale Amiotrofica, cambiamento di vita e rappresentazione dell’assistenza: uno studio quali-quantitativo su pazienti e caregiver
Granatiero, O. (2010) · doi:10.6092/10446_491
His and Hers : How Military Spouses Experience Physical, Psychological, and Relational Health
Buchner, L. J. (2013) · The Scholarship East Carolina University's Institutional Repository (East Carolina University)
Pain in amyotrophic lateral sclerosis
Войтенков, В. Б., & Ekusheva, E. V. (2019) · Journal of clinical practice · doi:10.17816/clinpract10266-73
Characteristics and influencing factors of pain in amyotrophic lateral sclerosis: a focus on symptom management
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Authors: Adelman, E. E., Albert, S. M., Rabkin, J. G., Del Bene, M. L., Tider, T., & O’Sullivan, I.
Affiliations: Northwestern University (US)
From the Feinberg School of Medicine (E.E. Adelman), Northwestern University, Chicago, IL, Gertrude H. Sergievsky Center (Dr. Albert, T. Tider and I. O’Sullivan), Department of Neurology and Eleanor and Lou Gehrig MDA/ALS Center (Dr. Albert, M.L. Del Bene), and Department of Psychiatry (Dr. Rabkin), Columbia University, New York.
ORCID: Adelman, E. E.
Albert, S. M.
Venue: Neurology
Publisher: Ovid Technologies (Wolters Kluwer Health)
Published: 2004-05-25
Volume: 62
Issue: 10
Pages: 1766-1770
ISSN: 0028-3878 (ISSN-L)
1526-632X
DOI: 10.1212/01.wnl.0000125180.04000.a4
OpenAlex: W2109976578
Cited by: 75
References: 11
Citations by year: 2026: 2 · 2025: 2 · 2024: 3 · 2023: 1 · 2022: 2 · 2021: 5 · 2020: 3 · 2019: 2 · 2018: 2 · 2016: 4 · 2015: 2 · 2014: 2 · 2013: 3 · 2012: 4
FWCI: 7.13
Type: journal article
Language: en
Open access: closed
Locations: Neurology (publishedVersion)
PubMed (publishedVersion)
Funders: National Institute of Mental Health (MH62200, R01MH062200)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords: amyotrophic lateral sclerosis, end-of-life care, patient-caregiver agreement, caregiver burden, patient distress, suffering, depression, ALSFRS-R, physical function, psychosocial impact
MeSH terms: Adult, Aged, Amyotrophic Lateral Sclerosis, Attitude to Health, Culture, Female, Humans, Male, Middle Aged, Pain Measurement, Patients, Quality of Life, Regression Analysis, Sampling Studies, Socioeconomic Factors, Stress, Psychological, Terminal Care, Caregivers

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Disparities in perceptions of distress and burden in ALS patients and family caregivers

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