Promoting Amputee Life Skills (PALS)

An estimated 1.8 million* Americans are currently living with the loss of a limb. Pain, psychological distress, reduced function and disability are common conditions following limb loss. Group and individually based self-management (SM) programs are effective in reducing the secondary conditions and disability associated with other chronic conditions, such as arthritis or diabetes. By effecting intermediary outcomes, ie reducing catastrophizing, and improving selfefficacy and social support, it has been shown that self management also improves primary outcomes such as pain, depression and positive mood, as well as activity, participation and quality of life, or secondary outcomes. However, the efficacy of SM customized to the specific needs of individuals living with limb loss has not been demonstrated. This ongoing study is testing the effectiveness of a community-based SM intervention for individuals with limb loss.

Based on the combination of our prior research which indicated a clear need for interventions targeting secondary conditions in persons with limb loss, as well as other research which has shown SM interventions to have strong and long lasting effects on pain, disability, and quality of life in other populations with chronic conditions, we developed PALS based on input from consumers and health professionals. Surveys were sent to 228 support group leaders identified by the Amputee Coalition of America (ACA), 97 responded. A focus group with the New York based support group ASPIRE was conducted, input was also received from our National Advisory Committee, and a pilot study was conducted in Baltimore.

Fifty two eligible groups were randomized into either the self-management course of 10- weeks (9- sessions), or to attend their usual support group meeting over the course of three months (3 meetings total). Adults 18 years or older with acquired amputations were eligible and were recruited from current members of the Amputee Coalition of America’s (ACA) group list, and through local prosthetists and rehabilitation centers, advertisements in inMotion, and lots of phone calls from staff, group leaders and facilitators. A telephone questionnaire was completed before the intervention, immediately post, and at three months, another will be completed at 6 months.

The self-management intervention consists of eight weekly group sessions facilitated by two trained leaders. The PALS trainers were individuals with professional backgrounds who either had experience leading a group or teaching adults. The PALS facilitator was a lay person, frequently the leader of a support group. One of these two people had to be an amputee. The emphasis on each session was on knowledge acquisition, problem solving, skill acquisition, selfmonitoring, and self-empowerment. Evaluation of the program looks at: treatment integrity and feasibility, ie retention and attendance, satisfaction ratings of both participants and leaders, and a review of 10% of taped sessions, as well as the cost of the intervention and the outcomes. There were 287 individuals in the intervention group and 235 in the control group.

Intervention vs Control Groups

The average size in the intervention group was ten. On average, participants attended 86% of PALS classes, 95% would recommend PALS to a friend, 71% said at the program was more helpful than a support group (of those prior members), 55% said the benefits outweighed the effort, and 32% said the benefits equaled the effort, 73% said that PALS was more important than other services available to manage limb loss and 21% said it was as important.

Satisfaction with Session Content

Preliminary result show that the PALS participants experienced statistically significant increases in Pain Self-Efficacy and General Self-Efficacy, and they were significantly less likely to have a depressed mood at three months. They were also more likely to report a decrease in the extent to which they were bothered by limitations in function.

Future plans include further analysis of the data and debriefing with the advisors, group leaders and facilitators. The possibility of developing and making available a PALS program on line, and how best to make the current program available nationwide, will also be explored.

* unpublished data, Johns Hopkins Bloomberg School of Public Health