Motor neurone disease (MND) places considerable burden upon patients and caregivers. This is the first study, which describes the disability profile and healthcare needs for persons with MND (pwMND) in an Australian sample from the perspective of the patients and caregivers to identify current gaps in the knowledge and service provision. A prospective cross-sectional community survey of pwMND (n=44) and their caregivers (n=37) was conducted, to determine symptoms and problems affecting daily living. Standardized assessments were carried out to determine the disease severity for stratification purposes, service needs and gaps. The mean age was 61 years with more men affected than women (3 : 2). The severity of disease was high (n=18; 41%) based on the Amyotrophic Lateral Sclerosis Functional Rating Scale. Despite the high level of disability, 11 (25%) solely relied on their families for all assistance. Caregivers were mostly partners (mean age: 57 years). PwMND reported more pain, emotional disturbance and spasticity/cramps/spasms. Caregivers focused more on psychosocial issues. Nineteen (43%) pwMND reported gaps in the service in rehabilitation therapy and respite. Significantly proportionally, more caregivers (n=19; 51%) reported gaps particularly in the area of psychosocial support. The gaps identified in the MND care should be prioritized for future service development using the 'neuropalliative rehabilitation' model of care. For improved consensus of care and communication among treating clinicians, the framework of International Classification of Functioning, Disability and Health should be explored in this population.
"Fatigue is a common disability in ALS – 77-83% in recent studies (Ng et al., 2011;Ramirez et al., 2008) but understudied and often overlooked by clinicians (Lou, 2008). It is unrelated to clinical strength as a large component of fatigue in ALS has a central origin (Kent-Braun and Miller, 2000). "
"With good support, mental health and quality of life can remain stable despite deteriorating physical health . In addition, an often-neglected part of rehabilitation in MND is support for continuation of work . Understanding personal factors can help target the subgroup of MND patients who wish to continue work— it has been found that intrinsic reasons (motivation resulting from a person's interest in and enjoyment of the work), followed by age, disability severity, and accessibility of travel  are the strongest predictors for this group. "
[Show abstract][Hide abstract] ABSTRACT: Motor neurone disease (MND) is a devastating condition. This preliminary study aims to identify relevant personal factors affecting the experience of living with MND from the perspective of persons with MND (pwMND) in an Australian cohort. A prospective cross-sectional survey of pwMND (n = 44) using an open-ended questionnaire identified personal factors that were categorised thematically. Standardised questionnaires assessed disease severity: depression, anxiety, and stress and coping strategies. Personal factors identified included demographic factors (socioeconomic status), emotional states (depression, anxiety, and fear), coping strategies (problem-based coping and denial), personality, beliefs (religious and personal values), attitudes (of the patient), and others (such as perceived support). An understanding of personal factors by treating clinicians is essential in the provision of optimal care in MND. This study may assist in the development of personal factors within the International Classification of Functioning, Disability, and Health for improved consensus of care and communication amongst treating clinicians.
[Show abstract][Hide abstract] ABSTRACT: To assess the prevalence and characteristics of pain in an epidemiological series of patients with amyotrophic lateral sclerosis (ALS) compared to population-based controls.
Of the 183 patients with ALS resident in the province of Torino, Italy, 160 accepted to be interviewed. Controls were randomly selected from the lists of general practitioners. Pain was assessed using the Brief Pain Inventory.
Patients with ALS reported pain more frequently than controls [91 (56.9%) vs. 53 (33.1%); P = 0.001]. Pain frequency and intensity were correlated with a worse functional score and a longer disease duration. In patients with ALS, pain was more frequently located at the extremities (P = 0.006). Pain interfered with all areas of daily function, but patients reported a greater interference than controls in the domains of enjoyment of life and relation with other people. Sixty-four patients (70.3% of those with pain) and 24 controls (45.3% of those with pain) (P = 0.003) were treated for pain, most frequently with non-steroidal anti-inflammatory drugs. ALS cases were also more frequently prescribed non-opioid analgesics and opioids than controls.
Our study indicates that pain is frequent in all stages of ALS, but that it often goes underrecognized and undertreated. It is significantly more frequent in patients with ALS than in population-based controls. Future studies need to clarify the mechanisms of pain in ALS and determine the most effective treatment strategy.
European Journal of Neurology 10/2011; 19(4):551-5. DOI:10.1111/j.1468-1331.2011.03540.x · 4.06 Impact Factor
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