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The Status of Outcome Measurement in Amputee


Rehabilitation in Canada
Barry Deathe, MD, William C. Miller, PhD, OT, Mark Speechley, PhD
ABSTRACT: Deathe B, Miller WC, Speechley M. The 100,000.1 Although a smaller number of the individuals who
status of outcome measurement in amputee rehabilitation in undergo amputation proceed to a prosthetic trial, its cost can be
Canada. Arch Phys Med Rehabil 2002;83:912-8. considerable. The typical Canadian service model for individ-
Objective: To describe how centers of amputee care in uals who do proceed to prosthetic trial involves inpatient re-
Canada evaluate program and patient outcome. habilitation for 3 to 6 weeks, followed by regular outpatient
Design: National postal survey. amputee clinic follow-up in most provinces. The cost of reha-
Setting: Amputee rehabilitation centers across Canada. bilitating an individual with a lower-extremity amputation from
Participants: Forty-four medical directors. initial fitting to 1 year postdischarge has been estimated to be
Interventions: Not applicable. as high as US $50,000.2 Given this resource demand, the cost
Main Outcome Measures: Type and frequency of use of benefit is a concern. Outcome measures, whether program- or
program evaluation, formal and informal patient outcome mea- patient-focused, can provide a common language to compare
sures data, and how collected data was used. models of service delivery and different treatment protocols or
Results: Forty-four clinics responded (response rate, 72%). interventions.
Program evaluation was conducted in some format by at least Although the majority of persons who have a new lower-
18 centers. Twelve centers conducted regular chart audits, extremity amputation are older and generally have multiple
whereas 15 indicated their intention to submit an annual pro- comorbidities,3-5 the population of community-living individ-
gram report. The majority of centers collected information on uals who have had a lower-extremity amputation is bimodal.1
patient outcomes; however, most used informal measures. Younger individuals tend to have amputations that are related
Thirty-nine clinics used part or all of a checklist of informal to congenital malformation or trauma, generally live longer
measures of skill attainment. The most common standardized than the elderly diabetic dysvascular amputee patient, and most
outcome measure was the FIM™ instrument (18 centers). Eigh- often achieve higher levels of function.6-8 Amputee rehabilita-
teen centers used a form of mobility performance such as tion, therefore, can be complex with respect to type and inten-
walking speed or timed walk test. Eighteen of 39 centers that sity of treatment and the anticipated level of function. It fol-
responded to this section did not collect any formal patient lows then that there is a need for stratification to account for the
outcome measures. The most frequently used outcome mea- differences in outcome expected for people of varying ages,
sures were the nonstandardized informal measures of indepen- comorbidity, etiology, and amputation level. For example,
dence. when considering an outcome such as the time it takes to walk
Conclusion: A diverse selection of program- and patient- 10m,9 it may be useful to stratify for ambulatory aids, comor-
related outcome measures were used by Canadian amputee bidity, and/or amputation level. Stratification speaks to the
centers. Outcomes could be better compared if all centers used need for multiple center trials to achieve sufficient statistical
similar outcome measures. power to discern meaningful differences, ideally with common
Key Words: Amputation; Program evaluation; Rehabilita- outcome measures.
tion; Treatment outcome. Agreement on appropriate outcome measures is not easy,
© 2002 by the American Congress of Rehabilitation Medi- given the aforementioned complexity of amputee rehabilitation
cine and the American Academy of Physical Medicine and care. There is no agreement on which outcome should be
Rehabilitation measured. Outcomes may be viewed as having a hierarchical
order, ranging from the crude to the complex, as in prosthetic
N CANADA IN 1996 –1997, 4180 transtibial and trans- prescription, prosthetic wearing time, mobility performance
Ipopulation
femoral lower-extremity amputations were performed in a
of approximately 29 million persons, representing a
and social activity, or community reintegration regardless of
prosthetic use. Further, it is unclear whether patient or program
potential amputee rehabilitation demand of 14 cases per and process factors, or both, should be measured.8 What is
clear is that regardless of which outcome measure is used for
clinical research or practice, consideration must be given to
the psychometrics (reliability, validity, responsiveness), the
From the Faculty of Medicine and Dentistry, Department of Physical Medicine and pragmatics (ease of use and scoring),10,11 and the credibility
Rehabilitation (Deathe) and Department of Epidemiology and Biostatistics (Speech-
ley), University of Western Ontario, London, Ont; Southwestern Regional Amputee
and comprehensiveness11 of the measure. Turner-Stokes and
Program, St Mary’s Hospital, London, Ont (Deathe); and Faculty of Medicine School Turner-Stokes12 reasoned that 1 possible indicator of the use-
of Rehabilitation Sciences, University of British Columbia, Vancouver, BC (Miller), fulness of a measure is the extent of its use by clinical centers
Canada. and/or by clinicians. Their assumption that use is reflective of
Accepted in revised form August 28, 2001.
No commercial party having a direct financial interest in the results of the research
utility or usefulness remains untested; however, it does provide
supporting this article has or will confer a benefit upon the author(s) or upon any a method of identifying what clinicians rely on for feedback
organization with which the author(s) is/are associated. regarding the outcome of intervention.
Reprint requests to A. Barry Deathe, MD, Dept of Physical Medicine and Reha- In 1997 the Amputee Interest Group, a component of the
bilitation, St Joseph’s Health Centre, 268 Grovenor St, London, Ont N6A 4V2,
Canada.
Canadian Association of Physical Medicine and Rehabilitation,
0003-9993/02/8307-6902$35.00/0 met to identify issues of concerns and barriers to clinical
doi:10.1053/apmr.2002.33221 research. The need for a Canadian amputee clinic and patient

Arch Phys Med Rehabil Vol 83, July 2002


OUTCOME MEASUREMENT IN AMPUTEE REHABILITATION, Deathe 913

registry was suggested. One purpose of such a registry would We used several methods to ensure that a suitable response
be to facilitate clinical research into several areas. Pivotal to rate was obtained. If no response was received within 3 weeks
this undertaking was the need to determine the outcomes and of the initial inquiry, we sent 2 reminders, one by fax and the
outcome tools used in Canada and how the information was other by surface mail. A final request for a response, which
used. A literature review revealed no countrywide surveys in included a second copy of the survey, was made if there was no
this area. Anecdotal evidence suggested that many centers do response after 7 weeks.
not measure outcomes and, if they do, the outcome used is
often locally constructed or is a modified version of existing Measurement
scales that has not been validated. The questions used in the study were a subsection of a larger
The goals of this study were to describe how centers of survey that was conducted in spring 1998. A modified version
amputee care from across Canada evaluate their programs and of the Delphi technique13 was used to construct the question-
patient outcomes and to learn how that information is used. The naire. Specifically, the content was based on our areas of
study objectives were: (1) to determine the frequency of some interest and clinical experience and from similar studies in the
risk management protocols, (2) to determine what specific literature. Initial and beta iterations of the questionnaire were
activities respondents believe should be included in an annual sent to 10 physiatrists and 1 orthopedic surgeon, who provided
report on amputee program care, (3) to describe the type and feedback with regard to the content, question, and response
frequency with which informal patient outcomes are assessed, format as well as on the operationalization of the variables.
(4) to identify what formal patient outcome measures are being The data for the study came from 4 subsections of the survey
used, and (5) to determine how patient outcome information is and included information about (1) program evaluation, (2)
used. informal patient outcome measures, (3) formal patient outcome
measures, and (4) how the patient outcome data were used.
METHOD Program evaluation. In this section, respondents were
asked to indicate whether they did or did not follow any
Design and Sample risk-management protocol such as chart audits or physician
A survey research design was used to gather the data from all sign off on falls and/or medication errors or omissions or other
identified Canadian amputee rehabilitation centers that were serious incidents. Further, they reported yes or no whether their
operating in 1998. Centers ranged from the unstructured—a center intended to issue an annual report in 1998. Regardless of
physician in a geographic area who routinely saw and super- intent, respondents were asked to indicate which items from a
vised amputee patients for prosthetic trials in his/her area—to list of 10 items (table 1) they thought were important to include
the highly structured—programs based in academic centers in an annual report.
with large teams and multiple physicians. To eliminate multi- Informal patient outcome measures. It is common prac-
ple responses from the same center, we asked the medical tice for clinicians to collect data about basic activities to
director to respond as the center’s representative. Identifying determine outcome after intervention. Therefore, we developed
these individuals was difficult because there is no national a checklist consisting of 11 commonly performed basic mobil-
amputee medical director registry, and there is considerable ity and other daily activities. Respondents were asked to indi-
interprovincial variation in the models of amputee rehabilita- cate the frequency (recorded as rarely, occasionally, com-
tion service delivery. Several strategies were implemented to monly, or always) with which they addressed the list of
identify all centers in Canada. In the province of Ontario, the activities before patient discharge from the initial prosthetic
list of physicians authorized to prescribe prosthetic devices was trial.
obtained from the Assistive Devices Program clinic registry. In Formal patient outcome measures. To be considered a
other provinces, at least 1 service provider in each province formal outcome measure, tools had to be standardized. Further,
was known to us through affiliation with the Canadian Asso- there had to be published evidence indicating that the tool was
ciation of Physical Medicine and Rehabilitation. These mem- used (although not necessarily in prosthetic trials). We catego-
bers were contacted and asked to give the names of all center rized the assessments into 1 of 3 groups and asked the respon-
directors known to them. This form of snowball sampling was dents whether they used the measure. Group 1, consisting of
continued until no new names were identified. comprehensive-observational measures, included the FIM™ in-

Table 1: Frequencies of Information That Should Be Included in Annual Program Reports

All Academic Nonacademic


Centers Centers Centers
Protocol/Information (n⫽39) (n⫽27) (n⫽12)

No. of admissions 34 (87.2) 23 (85.2) 9 (75.0)


Type of admissions 34 (87.2) 23 (85.2) 9 (75.0)
LOS 33 (84.6) 23 (85.2) 10 (83.3)
Time between amputation and rehabilitation 33 (84.6) 22 (81.5) 11 (91.7)
Patient demographics 31 (79.5) 22 (81.5) 9 (75.0)
Discharge outcome 31 (79.5) 21 (77.8) 10 (83.3)
Staff’s continuing education 26 (66.7) 17 (63.0) 9 (75.0)
Research activity 21 (53.8) 16 (59.3) 5 (41.7)
Analysis of failed prosthetic trials 21 (53.8) 14 (51.9) 7 (58.3)

NOTE: Values in parentheses are percentages. All differences between centers P ⬎.600.

Arch Phys Med Rehabil Vol 83, July 2002


914 OUTCOME MEASUREMENT IN AMPUTEE REHABILITATION, Deathe

strument,14 Barthel Index,15 Day’s Activities Score,16 and the Table 2: Frequency of Risk Management Protocols That Are
Clinical Outcome Variable Scale17 (COVS). Group 2 was Performed at Amputee Centers
labeled self-report measures and included the Medical Out- All Academic Nonacademic
comes Study 36-Item Short-Form Health Survey18 (SF-36), Centers Centers Centers
Prosthetic Profile of the Amputee19 (PPA), Prosthetic Evalua- Protocol/Information (n⫽38) (n⫽27) (n⫽11)
tion Questionnaire,20 and the Houghton Scale.21 The third Chart audits 12 (31.6) 9 (33.3) 3 (27.3)
group was termed mobility performance measures. These in- Falls 18 (47.4) 13 (48.1) 5 (45.5)
cluded tests of walking speed, such as the 5⫻2m, and the 10-m Medication errors 16 (42.1) 12 (44.4) 4 (36.4)
walk test,8 tests of walking distance such at the 2-, 6-, and Serious incidents 18 (47.4) 13 (48.1) 5 (45.5)
12-minute walk tests22-24 and the Timed Up and Go.25,26 Two Other incidents 7 (18.9) 6 (23.1) 1 (9.1)
additional response categories were included for none or other
and space was provided for respondents to identify the name of NOTE: Values in parentheses are percentages. All differences be-
the other tools. tween centers P ⬎.600.
Use of the patient outcome measures. Respondents were
asked what they did with the formal patient outcome measures
information. Specifically, they were asked to answer yes or no
as to whether they included the information in the patient cols was similar between academic and nonacademic centers,
charts, in the patient’s discharge summary, in a statistical except for other incidents. No statistical differences were found
summary of the clinic population, or did nothing with it. between academic and nonacademic centers for any of the
items.
Analysis A total of 15 (38%) centers indicated their intent to submit
Survey responses were analyzed by using descriptive statis- formal annual reports summarizing the amputee program for
tics such as frequencies and proportions. The survey distin- 1998. Whether or not they intended to submit an annual report,
guished between 2 types of walking speed tests and 3 timed responders were asked to check all subject areas that they
tests of walking distance. To limit redundancy in reporting the believed should be included in an annual report (table 1).
results, we collapsed these data into single categories of walk- Thirty-four (87.2%) of respondents selected information on the
ing speed and walking distance. number and type of admissions to amputee rehabilitation. Tem-
Although the primary objective of the study was to describe poral measures, such as the length of stay (LOS) and the time
evaluation as it occurred at all amputee centers, data from 2 lapsed between the amputation and rehabilitation admission,
subgroup analyses assessing program and formal patient out- were selected by 33 centers (84.6%). Information on discharge
come measures used is also presented in the tables. Specifi- destination (death, community, nursing home, acute care) was
cally, we questioned if the amputee centers that had a director deemed important by 31 of the 39 reporting centers (79.5%),
with a university faculty of medicine appointment were differ- whereas research activity and analysis of failed prosthetic trials
ent from centers that did not. We thought that centers with an were selected as important by only 21 centers (53.8%). Report-
academic affiliation were more likely to be interested in pro- ing on staff continuing education was an interest of 26 centers
gram and patient outcome measures because of their tertiary (66.7%). No systematic difference was observed between ac-
care mandate. Chi-square statistics using the Yates correction ademic and nonacademic centers with regard to what items
factor were derived to test our hypothesis. Statistical signifi- were perceived as important to include in an annual report.
cance was set at P less than .002 by using the Bonferroni However, a difference of greater than 10% was observed
correction to offset the possibility of type I error associated between the academic affiliated for 2 areas. Academic centers
with multiple testing. Data were managed and assessed by indicated that it was important to report on research activities,
using SPSS, version 8,a for Windows. and nonacademic centers indicated that it was important to
report on the length of time between amputation and rehabili-
RESULTS tation. None of the observed differences were statistically sig-
nificant.
Responses were received from 44 of the 61 identified med-
ical directors in the 10 Canadian provinces, giving an overall Patient Outcome Measures
response rate of 72%. All centers from the provinces of Al- Informal outcome measures. An informal checklist of
berta, Saskatchewan, Manitoba, New Brunswick, and Nova skill attainment or independence in performing basic mobility
Scotia responded. Six of the 8 known British Columbia centers and other daily activities constitutes 1 type of patient outcome
responded, 5 of 6 centers from Quebec, and 18 of 31 centers measure. Table 3 details the type and frequency with which the
from Ontario. Six of the returned surveys had incomplete amputee service providers record informal outcomes. The in-
information. formation was organized into 4 categories of activities: self-
care, transfer, ambulatory, and home-based activities. Self-care
Program Outcome Measures activities, specifically donning and doffing the prosthesis and
Program outcome was assessed by reported participation in dressing, were reported most frequently with at least 84% of
risk-management documentation and an intent to issue an an- the sample indicating that they always reported on these areas.
nual report describing program activity. Bath transfers and ambulating up and down stairs were always
A total of 38 centers provided information about risk-man- reported by 81% and 79% of the centers, respectively. Centers
agement documentation practices (table 2). Twelve centers were less likely to report on the ability of a patient to cross the
conducted regular chart audits, with the majority of these being street or on home visits.
academic centers. A total of 18 centers routinely had the Formal outcome measures. A total of 12 responders
medical director sign off on fall reports of serious incidents. (31%) reported that they did not use any formal outcome
Sixteen required medical director to sign off on medication measure to determine patient outcome. Of centers using formal
errors. The frequency of completing risk-management proto- measures, 18 (67%) did not use self-report measures, 11 (41%)

Arch Phys Med Rehabil Vol 83, July 2002


OUTCOME MEASUREMENT IN AMPUTEE REHABILITATION, Deathe 915

Table 3: Frequency of Informal Patient Outcome Measure Use in Amputee Centers in Canada

Reported Areas Centers Reporting (n) Always Commonly Occasionally Rarely

Self-care activities
Donning/doffing prosthesis 39 36 3 0 0
Dressing 37 31 3 2 1
Transfer activities
Car transfer 37 24 7 5 1
Bath transfer 37 30 4 2 1
Get up off floor 37 21 14 1 1
Ambulatory activities
Hopping 35 22 10 2 1
Stairs 37 29 7 1 0
Walking over various terrains 37 14 15 7 1
Street crossing 36 6 11 14 5
Home-based activities
Home visit 35 10 13 10 2
Home function (patient report) 37 20 15 2 0
Home entry 36 21 13 2 0

did not use a mobility performance test, and 5 (19%) did not Self-report measures were not widely used for collecting
use any form of comprehensive observational measure. information about outcomes; only 9 centers used this format.
The FIM instrument was used more than any other measure, The PPA was the most commonly cited tool, whereas the more
with 18 centers (47.4%) reporting its use (table 4). Five centers general SF-36 was used by 3 responders.
used other forms of comprehensive observational measures in In the mobility performance category, 19 centers (48.7%)
place of the FIM, with 3 centers indicating that they used more used 1 or more performance tests. Ten centers (25.6%) reported
than 1 such form. The COVS was used by 3 academic centers using a timed walking distance test such as the 2-minute walk
but not in any nonacademic settings. Use of the Barthel Index test, and 8 centers (20.5%) used a timed walking speed test
by nonacademic centers was the only other notable difference such as the 10-m walk test. The only notable difference be-
between responders with or without a university affiliation. tween academic and nonacademic centers appeared to be in the
walking speed tests, because 33.3% of the nonacademic centers
versus 14.8% of the academic centers collected information
using this form of measure.
Table 4: Frequency of Formal Patient Outcome Measures Used in Once again, there was no statistically significant difference
Canadian Amputee Centers between academic and nonacademic centers for the various
All Academic Nonacademic types of outcome measurements used.
Centers Centers Centers Outcome use. We asked what the centers did with the
Type of Outcome Measure (n⫽39) (n⫽27) (n⫽12) formal patient outcome measures that they used. Ten of 39
Comprehensive observational centers answering this question did not collect any formal
measures patient outcome measures. Twenty-one centers reported that
FIM instrument 18 (46.2) 13 (48.1) 5 (41.7) they filed the outcome data in a patient chart, but only 11
Minimum data set 2 (5.1) 2 (7.4) 0 (0.0) centers reported those measures in a discharge summary. Fi-
Barthel Index 3 (7.7) 0 (0.0) 3 (100.0) nally, 9 centers used the data from outcome measures in
COVS 3 (7.7) 3 (11.1) 0 (0.0) statistical summaries describing the clinic population.
Day’s Activity Score 2 (5.1) 1 (3.7) 1 (8.3)
Other 2 (7.7) 2 (7.4) 0 (0.0) DISCUSSION
Self-report Sixty-one centers involved in amputee care in Canada were
SF-36 3 (7.7) 3 (11.1) 0 (0.0) identified by using a combination of clinic registry and snow-
PEQ 1 (2.6) 1 (3.7) 0 (0.0) ball techniques involving the amputee interest group. The 72%
PPA 4 (10.3) 3 (11.1) 1 (8.3) response rate achieved in the study varied by region. Six
Houghton mobility scale 2 (5.1) 2 (7.4) 0 (0.0) provinces (Alberta, Saskatchewan, Manitoba, New Brunswick,
Goal Attainment Scale 1 (2.6) 1 (3.7) 0 (0.0) Nova Scotia, Newfoundland) participated fully, whereas only
Mobility performance 18 of 31 clinics in Ontario responded. The 13 nonrespondents
Walking speed test 8 (20.5) 4 (14.8) 4 (33.3) from Ontario were without exception small clinics, as were the
Walking distance test 10 (25.7) 7 (25.9) 3 (25.5) 1 Maritime nonrespondent and the 2 nonresponders from Brit-
Repetitive chair rise 2 (5.1) 1 (3.7) 1 (8.3) ish Columbia. The reasons for the variation in response are not
TUG 5 (12.8) 4 (14.8) 1 (8.3) known, although work and questionnaire-related burdens
Other 4 (10.3) 2 (7.4) 2 (16.7) among the clinic medical directors probably accounted for
some of the nonresponse. We do not know what proportion of
NOTE. Values in parentheses are percentages. All differences be-
tween centers P ⬎.400.
amputee rehabilitation care was represented from at least 2
Abbreviations: PEQ, Prosthetic Evaluation Questionnaire; TUG, provinces (British Columbia, Alberta) because in those in-
Timed Up and Go. stances the provincial health care plans fund prosthetic care on

Arch Phys Med Rehabil Vol 83, July 2002


916 OUTCOME MEASUREMENT IN AMPUTEE REHABILITATION, Deathe

receipt of any doctor’s prescription, after which no further prosthetic trials, making independence in donning and doffing
physician or therapist involvement is necessary. The data in- at discharge immaterial.
dicated that all academic centers and centers representing large Similarly, the occasional category may reflect activities that
populations were represented. were checked only if need to do was important to the discharge
Program outcome measures traditionally include chart audits environment. It is surprising that street crossing and home
for adherence to accepted clinical practice guidelines, resource visits by a therapist were the most reported occasional items.
utilization factors (ie, LOS), and more recently, risk-manage- This may suggest that a focus of rehabilitation remains at the
ment measures that identify correctable patterns of omissions person level, or what Verbrugge and Jette27 call functional
and commissions. Although the majority of prosthetic rehabil- limitation, and not at the disability or reintegration to commu-
itation in Canada is inpatient, it is surprising that of 38 centers nity-living level.
In our survey of comprehensive observational patient out-
responding, less than one third did chart audits and less than
come measures (multiactivities), slightly less than half of the
50% required physician sign off on what are believed to be responding centers did not use this class of outcome tools.
significant adverse events (eg, falls, medication errors). Sub- Eighteen of the 22 centers using such measures use the FIM
analyses showed that risk-management protocols do not occur instrument. In our survey, the predominance of the FIM, which
more frequently in centers in which the medical director has a was used by just under 50% of the respondents, is at first glance
university appointment. The size of the center also did not a peculiar choice given the relative insensitivity and high
seem to be related to risk-management protocols. Our study did ceiling effects when it is used as an outcome for prosthetic
not clarify further how risk management is done in many trials.28 Furthermore, the FIM is a measure that requires sig-
centers. nificant staff time for training and data collection. It may be
Annual reports, depending on their content, can also be that the FIM’s popularity is related to administrative needs.
thought of as a program outcome measure. Less than 50% of Most centers in Canada, being hospital based, do rehabilitation
the centers reported plans to issue an annual report in 1998. for patients with multidisabilities in addition to amputees, and
Further, no statistical differences were evident based on the thus may use a measurement tool that applicable across dis-
academic affiliation of the center. This was an unexpected abilities and across centers. The Canadian Institute of Health
result. One would expect that academic centers, which have Information (CIHI) has just developed and distributed software
multiple disability rehabilitation programs (ie, spinal cord, for a minimum data set collection in Canada that uses the FIM.
stroke, head injury, amputee, musculoskeletal), would be of The CIHI collects data on admission and discharge variables.
sufficient critical mass and consume enough resources that The admission recording form has 70 items grouped as follows:
annual reports listing some of the content areas we indicated client identification (5 items), demographic (6 items), social
would have been more common. variables such as preadmission living circumstance (4 items),
Annual report contents identified as important were variable administrative (12 items), health characteristics (8 items), and
and unanimity was conspicuously lacking. Thirty-four of 39 24 items regarding activities that include the FIM, general
centers identified demand (the number and type of admissions) health, impact of pain, and instrumental activities of daily
as being important, and 33 centers indicated temporal factors living variables. The discharge recording form has a similar 70
such as LOS and time lapse between amputation and rehabil- items with an optional list of rehabilitation intervention vari-
itation were important. Our unstated hypotheses was that all of ables.
the subject areas we listed would be important to all amputee The minimum data set is now in national trial; however, it
centers. There was even less unanimity for contextual infor- requires significant therapist time and its responsiveness in
mation such as patient demographics and discharge destination. amputee prosthetic trials is questionable given the limited
The least agreement was for reporting of analytic activities of responsiveness of the FIM.28 Nevertheless, the CIHI minimum
research and analysis of failed trials, although 27 of 39 centers data set may yet be useful in amputee rehabilitation with the
were identified as having a medical director with a university addition of simple performance measures such as standardized
affiliation. Better information may have come from ranking the walking times or speed. We have advocated the addition of
items. However, we avoided this approach because it would such tests.
have added to respondent burden and this we did not want to do Only 9 of 39 centers reported using self-report outcomes,
with a survey that was already 21 pages long. although this class can be completed in a waiting room or
The content for the checklist of activity independence arose mailed out and may be a good choice for follow-up clinics. No
from the combined experience of the authors and the amputee 1 measure dominated. Three of the 4 users of the PPA were
interest group. The majority of respondents did indicate the based in Quebec, the province in which this tool was devel-
frequency of each activity. Activities that were assessed as oped.
being done commonly or always likely reflected clinical use- Measures of walking performance were a relatively popular
fulness. We did not ask if the checked activities were by choice of outcome evaluation. Interestingly, the tests using
observation or by self-report, although we assumed that the fixed distances have published psychometrics for the amputee
majority of the activities checked were observational given that population, whereas the equally used fixed-time tests (2-, 6-,
most amputee rehabilitation in Canada is done on an inpatient and 12-min walk tests of endurance) have had no published
basis. The always category was checked 36 times and the psychometrics specific to the amputee population. Some cen-
commonly category 3 times for the 39 centers reporting on ters indicated that they used maximum walking distance tests,
doffing and donning. Given that it is inconceivable that don- which are essentially tests of walking endurance. This kind of
ning and doffing independence would not be checked out measure also has no known published psychometrics. Clearly,
before discharge, it is likely that commonly reflected that some no consensus exists on which mobility performance test to use,
amputee rehabilitation admissions were not prosthetically fo- given the wide range of capabilities of amputees and the
cused (transfer training, wheelchair assessments, or admissions multiple components of functional mobility that need to be
for comorbidity control or investigations). In addition, select- tested (transfers, balance, walking skill, walking endurance).
ing the commonly category might have been reflective of failed Complicating matters may be the need for stratification based

Arch Phys Med Rehabil Vol 83, July 2002


OUTCOME MEASUREMENT IN AMPUTEE REHABILITATION, Deathe 917

on mobility device use, amputation level, age, and/or comor- research trials. Consensus should also be achieved concerning
bidity. Further research is indicated not only into the psycho- content in annual reports from organized amputee rehabilita-
metrics of fixed-time mobility performance tests, but also on tion centers as 1 visible method of documenting program
selecting 1 test that will incorporate the components of func- efficacy.
tional mobility and be robust enough to cover the spectrum of Finally, it is clear that the vast majority of centers use
uncompetitive amputee performance. informal checklists that document important areas of indepen-
What a center does with the data collected from the outcome dence achieved. Clarification of activity definition and criteria
measures may also provide insight regarding the perceived use for independence would be the first step toward standardization
of the tool. Of the 31 centers using 1 or more formal outcome of these informal checklists that may eventually be a reason-
measures, 21 filed the data, but only 16 used the informa- able class of outcome measurement that could be used to
tion for external purposes, either in discharge summaries describe program efficacy and patient outcome.
(n⫽11) and/or for statistical compilations (n⫽9). Only slightly
more than half of the centers using the FIM used this data Acknowledgments: The authors thank Drs. John Clifford and
externally either in discharge summarizes (n⫽7) and/or in Tim Doherty for reviewing an early version of the article. A special
statistical compilation (n⫽6). thanks goes to the 10 physiatrists and the orthopedic surgeon for their
There are 3 possible explanations for collecting formal pa- assistance in the development of the questionnaire.
tient outcome measures and then only filing that information.
First, the outcome data may not have been considered useful References
clinically (ie, been imposed administratively). Second, the data 1. Miller WC. Falling, fear of falling and balance confidence among
may have been useful internally, perhaps for follow-up, but amputees [dissertation]. London (Ont): Univ Western Ontario;
was not considered useful to report to others. A third explana- 2000.
tion may be that multiple summaries were done by team 2. Calle-Pascual AL, Redondo MJ, Ballesteeros M, et al. Nontrau-
matic lower extremity amputations in diabetic and non-diabetic
members such that a physician would report to a referring
subjects in Madrid, Spain. Diabetes Metab 1997;23:519-23.
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limits the generalizability of our results. It is our belief, how- of arteriosclerotic lower limb amputees. J Rehabil Res 1991;28:
ever, that the vast majority of urban and academic centers, 35-44.
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