title: Evaluation of the psychological status of ventilatory-supported patients with ALS/MND.
abstract: Many medical professionals feel that a choice of long-term ventilatory support leads to a life of hopeless desperation. We compared the sociodemographic, physical and psychological status of 18 amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) patients on ventilatory support for 1 to 120 months with that of 126 nonventilatory-supported ALS/MND patients. Patients filled out a comprehensive data form and completed ten psychological tests. A composite psychological status score was computed, representing a continuum from psychological distress to psychological well-being. Mann-Whitney and chi 2 tests were used to compare the two groups. There were no significant differences in sociodemographic makeup, depression, hopelessness, overall quality of life or psychological well-being. However, ventilatory-supported patients had a more internal health locus of control. Many patients on ventilatory support were able to live high quality lives. When ventilatory support is an option, we suggest that medical professionals be supportive of the patient's choices and recognise that a decision for ventilatory support is probably the best predictor of an acceptable quality of life on a ventilator.
authors.affiliation: New Road Map Foundation, Seattle, Washington, USA.
authors.forename: E R
authors.initials: ER
authors.lastname: McDonald
authors.forename: A
authors.initials: A
authors.lastname: Hillel
authors.forename: S A
authors.initials: SA
authors.lastname: Wiedenfeld
mesh_terms: D000223:Adaptation, Psychological; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology / Q000628:therapy; D005260:Female; D017048:Health Care Costs; D006801:Humans; D007389:Internal-External Control; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000523:psychology / Q000628:therapy; D009468:Neuromuscular Diseases / Q000191:economics / Q000523:psychology* / Q000628:therapy*; D010549:Personal Satisfaction; D015143:Philadelphia; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012121:Respiration, Artificial / Q000191:economics / Q000523:psychology*; D012495:San Francisco; D012959:Socioeconomic Factors; D014861:Washington