PHILADELPHIA—Patients with amyotrophic lateral sclerosis (ALS) do not rank the severity of their symptoms in the same order as the prevalence of their symptoms, according to a recent survey presented at the 53rd Annual Meeting of the American Academy of Neurology. Constipation and fatigue, for instance, were considered among the “most bothersome” symptoms patients faced, whereas cramps and stiffness were among the most common symptoms they experienced.

Patient reports of symptoms and their perception of treatment effectiveness are factors vital to the management of ALS, emphasized Terry D. Heiman-Patterson, MD, from the MCP Hahnemann University. In this multicenter study, patients with ALS were surveyed to determine what symptoms were present, the severity, treatments utilized, and perception of treatment efficacy, she explained.

SPECTRUM OF SYMPTOMS

Among the most prevalent symptoms the patients reported were cramps (71%), fasciculations (68%), and stiffness (64%). Fifty percent or less of patients experienced fatigue, constipation, sleep disturbance, sialorrhea, anxiety, dry mouth, thick phlegm, and emotional lability. Less than one third of the patients reported urgency or laryngospasm.

Constipation was found to be the most bothersome symptom reported by patients in this survey (84%), followed by fatigue (67%) and difficulty sleeping (65%). The majority of the patients also sought treatments for sialorrhea, dry mouth, and depression. Dry mouth, phlegm, and stiffness were considered bothersome in about 60% of the patients. Anxiety and cramps were rated as bothersome by 48% and 53% of the patients, respectively.

Constipation is an often-overlooked symptom in ALS, noted coauthor Dallas Forshew, RN, from the University of Utah, Salt Lake City. Constipation may be due to a change in diet and lack of mobility. Some patients avoid drinking fluids because of problems getting to the bathroom, he observed. They may become dehydrated. “We need to head off [constipation] before it becomes a problem. It’s something that we should not see in ALS, if we are on top of it,” Dr. Heiman-Patterson added.

WHICH TREATMENTS DO PATIENTS PREFER?

The patients also assessed treatments for symptoms that have improved their quality of life. Treatments rated most helpful included a suction machine or amitriptyline for sialorrhea, quinine and tizanidine for cramps, and lorazepam or alprazolam for anxiety. Depression was controlled with amitriptyline, fluoxetine, and paroxetine. Dry mouth was relieved with mouthwash and sucking hard candy. Baclofen was good for treating symptoms such as fasciculations, laryngospasm, and stiffness. Sleep disturbance was effectively treated with bilevel positive airway pressure.

Patient perception of their medication’s efficacy did not necessarily match its indication. A patient may be prescribed medication for one problem (eg, stiffness), but in their view, the medication is alleviating a different problem, such as cramps. This may skew the study results. But, Ms. Forshew emphasized, “the whole point of this [study] is that patient perception is really what matters.”

Characterizing the spectrum of patient symptoms in ALS is “really a huge project that piece by piece will come out,” Ms. Forshew said. The next phase of the study will use more centers to get a broader spectrum of treatment modalities and effectiveness according to the patients. “If we can get enough centers involved,” Ms. Forshew said, “we will be dividing up the different treatments and doing some comparisons so that we can have evidence-based data for symptomatic management.”

NR