Psychosocial adjustment of post-poliomyelitis ventilator assisted individuals

The effect of severe disability, tracheostomy, and ventilator use on psychosocial functioning, gainful employment, life satisfaction, and perceived well-being were studied for a population of 395 ventilator assisted post-poliomyelitis individuals (PVAIs). Standard psychosocial survey instruments and other general questioning were used. Two-hundred-seventy-three physically intact health care professionals served as controls. They were surveyed about their own life satisfaction and perceived well-being and were asked to judge how severely disabled ventilator assisted individuals would respond to such questioning. The relative distress associated with ventilator use was also evaluated in a similar manner. Fifty six of 380 responding PVAIs (14.7%) expressed dissatisfaction with their lives in general. This compares with 8.5% of the controls and 7% of a previously studied general population. The controls significantly underestimated the patients' life satisfaction and well-being scores and significantly overestimated the relative hardship associated with ventilator use. The post-polio individuals using noninvasive methods of assisted ventilation were also significantly more satisfied with their lives than were those ventilated via tracheostomy. Fifty-seven of 148 (39%) individuals married and 165 of 395 (42%) individuals were gainfully employed during long-term ventilator use. We conclude that many severely disabled post-poliomyelitis ventilator users lead productive lives. The vast majority have a positive affect and are satisfied with life. Noninvasive ventilatory support alternatives may lend to greater life satisfaction for these individuals than ventilation delivered via an indwelling tracheostomy. Health care professionals may significantly underestimate their patients' satisfaction with life and this may have a bearing on patient management.