Abstract
Objective:
This study examined patterns of social participation among individuals experiencing their first dysvascular lower extremity amputation. We identified the types of social participation valued by this population and explored factors that were associated with individuals’ levels of participation and their subjective satisfaction with participation.
Design:
A prospective cohort was recruited from four Veterans Administration Medical Centers and followed for 1 yr after amputation. Social participation was measured with a modified version of the Community Integration Questionnaire. Potential correlates included the Patient Health Questionnaire-9, Modified Social Support Survey, Locomotor Capability Index 5, Short Portable Mental Status Questionnaire, and self-rated health.
Results:
At 1-yr postamputation, participants indicated that the most valued aspects of social participation were maintaining close friendships, visiting loved ones, and managing finances. Levels of social participation and satisfaction with participation were modest at 1-yr postamputation. Higher levels of social participation at 1 yr were related to better baseline mental status, better premorbid mobility, and lower amputation level. Higher satisfaction with participation was related to greater baseline social support.
Conclusions:
Individuals’ social participation may be influenced by physical and cognitive factors, whereas their satisfaction with participation may be influenced by psychosocial factors. Rehabilitation specialists are encouraged to address both aspects of social participation when formulating and pursuing rehabilitation goals.
Keywords: Amputation, Social Participation, Dysvascular Disease, Quality of Life
The ability to participate in meaningful and valued social and community activities is an important contributor to quality of life and an important goal of rehabilitation.1 Such participation has two facets: individuals’ actual level of activity (objective participation) and their satisfaction with this level of activity (subjective participation). Individuals may experience declines in both facets of participation when physical or cognitive limitations make it difficult to engage in important activities inside or outside the home.
Limb loss can affect social participation, particularly if limb loss occurs in the context of chronic disease, the modal amputation etiology.2 Amputations can result in loss, reduction, or change in employment,3 as well as a shift from independent living at home to assisted living in a nursing facility.4 Amputation can also impact mobility; estimates of ambulatory mobility after amputation vary from 23% to 97%, and one recent study indicated that although ambulation increases from the immediate postoperative period to 1-yr postamputation, it does not typically reach premorbid levels.5
Given these mobility challenges, it is unsurprising that people with lower extremity amputations (LEAs) secondary to dysvascular disease report lower levels of social integration relative to their nondisabled counterparts.6 Amputation seems to impact social role activities more than activities of daily living,7 and social role activities are strongly linked to quality of life.8 Existing research points to potential risk factors that may affect participation after limb loss, including amputation level,9,10 depressed mood,11 and age.9,10 The literature also points to potential resilience factors, including better cognitive functioning12 and greater social support.6,9
There has been a call for a more patient-centered approach to defining and measuring rehabilitation outcomes, which takes into account the “insider’s perspective” on living with a disability13 In the context of social participation, this means assessing not only whether individuals can engage in activities, but also whether they are satisfied with their ability to do the things that matter most to them.14 Different factors may influence individuals’ level of social participation versus their subjective satisfaction with it. Likewise, different intervention approaches may be needed to target level of participation versus satisfaction with participation. Not enough is known about these differences in the context of amputation, and much of the existing research emphasizes level of participation rather than satisfaction. Research directly comparing these two constructs suggests that although they are highly correlated, satisfaction with participation may have the greater impact on quality of life.8 Exploring the unique factors that impact social participation and satisfaction with participation is a key priority for rehabilitation research.15
This study examined level of social participation, satisfaction with social participation, and the factors that may contribute to these outcomes in individuals with LEA, 1 yr after incident amputation. This study explored the following three questions:
Which baseline factors are associated with high levels of social participation 1 yr after amputation?
Which baseline factors are associated with high satisfaction with social participation 1 yr after amputation?
Which areas of social participation matter most to individuals with LEA?
METHODS
Study Design
This study is a secondary analysis of a larger multisite longitudinal cohort study aimed at establishing a predictive model of functional outcomes after major LEA secondary to diabetes mellitus (DM) or peripheral artery disease (PAD). This study was conducted between 2010 and 2014. Participants recruited from four veterans administration (VA) medical centers were assessed in person or via telephone at the following four time points: baseline (i.e., within 1 wk of the definitive amputation procedure), 6 wks, 4 mos, and 1 yr after amputation. Only baseline and 1-yr follow-up data were included in the present analyses. Study procedures were approved by local institutional review boards in accordance with established ethical standards. Written informed consent was obtained from all participants before enrollment in the study. This study conforms to all STROBE guidelines and reports the required information accordingly (see Supplementary Checklist, http://links.lww.com/PHM/A419).
Participants
Participants were eligible to participate in this study if (a) they were at least 18 yrs old, (b) they were awaiting or underwent in the last 7 days their first major LEA, defined as transmetatarsal level or higher, and (c) the primary reason for amputation was complications of DM or PAD. Participants were excluded if (a) they had inadequate language or cognitive function to consent or participate, defined by more than four errors on the Short Portable Mental Status Questionnaire16 or (b) they were nonambulatory before the amputation for reasons unrelated to PAD or DM. Of 415 individuals screened, 198 (48%) met eligibility criteria. Among the 217 who were ineligible, the most common reasons were planned bilateral amputation (23%) or previous amputation (45%). Among those who were eligible, 85 (43%) refused, missed the recruitment window, or died before they could be enrolled, leaving 113 (57%) who were enrolled in the study. Of those enrolled, 19 participants (17%) died, 6 (5%) were lost to follow-up, 5 (4%) withdrew, and 1 (1%) refused the 12-mo assessment. Of the remaining participants, 68 (60%) completed both baseline and 12-mo assessments of social participation and were included in the present analyses.
Social Participation Measures
Level of Social Participation
Participants completed a modified 18-item version of the Community Integration Questionnaire (CIQ).17 Despite its strengths, it required augmentation to be more patient centered and better explore the insider’s perspective of social participation in this specific population. Therefore, exploratory items were added, influenced by the Participation Objective-Participation Subjective (POPS) instrument18 and the Craig Handicap Assessment and Reporting Technique.19 New social participation items relevant to the veteran population described home/yard maintenance and repair, car maintenance, participation in community activities (e.g., churches or clubs), sexual activities, exercise/sports, and hobbies (e.g., woodworking or playing a musical instrument). The CIQ item concerning childcare was amended to include care for any other person or pet in the home.
At each time, participants were asked about their level of participation in each activity, using the same response options as the original CIQ, plus a “not applicable” option. Depending on the item, participants reported on how often the activity occurred (i.e., times per month or hours per week), who performed the activity (i.e., self versus someone else), or a yes/no response (e.g., “Do you have a best friend in whom you can confide?”). Consistent with the CIQ, all responses were recoded into scores of 0, 1, or 2 to provide consistent scoring and weighting across these diverse response options (responses of “not applicable” were scored “0”). All item-level scores were summed to create a total score reflecting the extent of social participation, ranging from 0 to 36, with higher scores representing greater participation. Cronbach’s alpha was used to assess whether scores on new exploratory items were highly correlated with the subset of original CIQ items. Internal consistency for the original set of items was α = 0.71, the full set of items was α = 0.77, and the α values if each new item were removed did not fall below α = 0.75. Hence, the exploratory items were retained in the total score.
Satisfaction With Social Participation
At each time, participants also reported on their satisfaction with their level of participation in each activity. Influenced by the POPS,18 this study inquired, “Would you like to be doing more or less [activity] than you are doing now?” Response options included “more,” “less,” or “same.” Responses indicating that participant would like to be doing more were recoded “0.” Responses indicating that participant would like to be doing the same amount (or less), and thus were presumably satisfied with their ability to participate, were recoded “2.” Responses of “not applicable” were scored “0.” Items were summed to produce total scores ranging from 0 to 36 with higher scores representing greater satisfaction with participation.
Importance of Various Types of Social Participation
Participants also provided information about the subjective importance of each activity. This question, modeled after the POPS,18 inquired, “How important is [activity] to your satisfaction with life?” Response options ranged from “1” (not at all important) to “10” (extremely important), with any “not applicable” responses scored as “1.”
Participant Characteristics and Possible Correlates of Social Participation
Demographics and Baseline Health
Baseline measures included demographics (age, sex, race, marital status, and educational attainment), health conditions (PAD, DM, and hypertension diagnoses), and information about the level of the index amputation (dummy coded 0/1 for inclusion in regression models).
Mobility
Mobility was assessed with the Locomotor Capability Index (LCI-5),20 a measure that has demonstrated favorable reliability and validity.21 At baseline, participants were asked to complete the LCI-5 retrospectively, describing their premorbid mobility (i.e., mobility during the period immediately before developing limitations in the leg undergoing amputation, such as disability resulting from ulcer, edema, or associated pain). As such, the LCI-5’s references to prosthesis use were deleted from the baseline and 12-mo administration of the measure. The LCI-5 consists of 14 items graded on a five-level ordinal scale. Possible sum scores range from 0 to 56 with higher scores representing greater functional mobility.
Mental Status
Participants completed the ten-item Short Portable Mental Status Questionnaire16 as a brief screening for orientation and general mental status. Individuals with more than four errors on the Short Portable Mental Status Questionnaire at the time of initial screening were excluded from this study, because such scores suggest moderate cognitive impairment and have been used as exclusion criteria in similar studies.15
Depressive Symptoms
The Patient Health Questionnaire-9,22 a well-validated self-report instrument, was used to assess depressive symptoms.23 The Patient Health Questionnaire-9 asks participants to report how frequently they experienced each of nine symptoms of depression for the past 2 wks, ranging from “0” (not at all) to “3” (nearly every day). Possible sum scores range from 0 to 27 with higher scores representing greater depressive symptoms.
Self-rated Health
Self-rated health was assessed using a single item modeled after the general health question from the Medical Outcomes Study 36-item Short-Form Health Survey.24 Response options ranged from “1” (very poor) to “5” (very good). This single-item approach has been used extensively and has the advantage of brief, simple administration.25
Social Support
Perceived social support was assessed using the brief version of the Modified Social Support Survey,26 which assesses the extent to which individuals feel they can count on others for various needs (e.g., “to take you to the doctor if you need it,” “to love and make you feel wanted”). The Modified Social Support Survey was initially developed as part of the Medical Outcomes Study and subsequently shortened as part of the Multiple Sclerosis Quality of Life Inventory.27 In this brief format, possible scores range from 0 to 100 with higher scores indicating greater support.
Data Analytic Strategy
Preparatory Analyses
All statistical analyses were conducted using IBM SPSS software, Version 19.0 (IBM Corp, Armonk, NY). First, data were checked for outliers and violations of normality. To correct for multicollinearity in multivariable models, variables were centered. The study next assessed whether there were any systematic differences between individuals who answered all social participation items and those who did not, using one-way analyses of variance and chi-squared analyses.
Factors Associated With Social Participation
To address which baseline factors are associated with high levels of social participation and high satisfaction with participation, two linear regression analyses were conducted. The outcome variables were the level of social participation and satisfaction with participation, measured at 1-yr postamputation. The explanatory variables were psychosocial, demographic, and health-related characteristics measured at baseline. The explanatory variables included in the regression models were determined through preliminary univariate analyses. Any variables associated with either outcome at a P value of less than 0.05 level were then included in both multivariable linear regression models.
Importance of Various Areas of Social Participation
To identify areas of social participation that matter most to individuals, descriptive statistics (mean, SD) were computed on responses to the question, “How important is [activity] to your satisfaction with life?” at 12 mos.
RESULTS
Participant Characteristics
All participants were Veterans receiving care at participating VA Medical Centers. Most participants were white men, with a mean (SD) age of 62.6 (7.2) yrs. Most amputations (78%) were transtibial or lower, and most participants were diagnosed with PAD, DM, and/or hypertension. At 12-mo postamputation, 38 (56%) had been fitted with a prosthesis. At perioperative baseline, the sample’s mean depression symptoms were in the mild to moderate range (Patient Health Questionnaire-9 mean = 9.2) (Table 1). Those included in the present analyses had greater depression symptoms (F1,111 = 6.10, P = 0.02) and higher rates of marriage (χ2 (1, n = 113) = 4.80, P = 0.03) than those with missing data.
TABLE 1.
Sociodemographic and baseline health characteristics of the study participants
| Mean (SD) or n (%) | Range | |
|---|---|---|
| Sex (% male) | 67 (99%) | — |
| Race | ||
| White | 47 (69%) | — |
| African-American | 19 (28%) | — |
| Other | 2 (3%) | — |
| Ethnicity (% Hispanic/Latino) | 6 (9%) | — |
| Age, yr | 62.6 (7.2) | 43–89 |
| Married/partnered | 40 (59%) | — |
| Amputation level | ||
| Transmetatarsal | 17 (25%) | — |
| Transtibial | 36 (53%) | |
| Transfemoral | 15 (22%) | — |
| Co-morbid medical conditions | ||
| PAD | 48 (71%) | |
| DM | 49 (72%) | |
| Hypertension | 57 (84%) | |
| Mobility, premorbid (LCI-5) | 43.7 (14.4) | 5–56 |
| Depressive symptoms (PHQ-9) | 9.2 (6.8) | 0–27 |
| Self-rated health (single-item) | 3.3 (0.8) | 1–5 |
| Perceived social support (MSSS) | 73.8 (29.7) | 0–100 |
| General mental status (SPMSQ) | 9.3 (1.0) | 6–10 |
LCI-5, Locomotor Capability Index 5; MSSS, Modified Social Support Survey; PHQ-9, Patient Health Questionnaire-9; SPMSQ, Short Portable Mental Status Questionnaire.
Levels of and Satisfaction With Social Participation
One year after amputation, participants reported a relatively low level of participation, with a mean (SD) modified CIQ score of only 13.4 (6.1), well below the midpoint of this 0 to 36 scale (Table 2). At 1 yr, varying proportions of participants reported that they were satisfied with their participation levels in the 18 activities, ranging from 25% (sexual activity) to 84% (having a best friend to whom to confide). Among the top three most valued activities, satisfaction rates varied widely; although 81% were satisfied with their ability to manage finances and 84% were satisfied with having a best friend, only 50% were satisfied with how often they visited loved ones. The mean (SD) total subjective participation score of 20.4 (7.8), just above the midpoint of this scale’s 0 to 36 range, suggests that the overall level of satisfaction with one’s ability to participate was modest. Level of participation and satisfaction with participation were modestly correlated at 12 mos (r = 0.24, P = 0.05).
TABLE 2.
Level of participation in various activities at 12-mo postamputation
| In the past month, who has usually done the following activities? | Yourself alone (coded 2), n (%) | Self and someone else (coded 1), n (%) | Someone else (coded 0), n (%) |
| Shopping for groceries | 8 (12) | 20 (29) | 40 (59) |
| Preparing meals | 12 (18) | 16 (24) | 40 (59) |
| Doing everyday housework | 11 (16) | 13 (19) | 44 (65) |
| Taking care of people/pets* | 9 (13) | 18 (27) | 41 (60) |
| Planning social engagements | 15 (22) | 25 (37) | 28 (41) |
| Doing home repairs* | 5 (7) | 12 (18) | 51 (75) |
| Taking care of vehicles* | 16 (24) | 5 (7) | 47 (69) |
| Looking after personal finances | 32 (47) | 10 (15) | 26 (38) |
| In the past month, how many times have you participated in the following activities? | 5+ times/mo (coded 2), n (%) | 1–4 times/mo (coded 1), n (%) | Never (coded 0), n (%) |
| Shopping outside the home | 24 (35) | 31 (46) | 13 (19) |
| Participating in leisure activities | 15 (22) | 25 (37) | 28 (41) |
| Participating in community activities* | 12 (18) | 23 (34) | 33 (49) |
| Visiting with friends and relatives | 27 (40) | 33 (49) | 8 (12) |
| Traveling outside the home | 16 (24) | 20 (29) | 32 (47) |
| Participating in sexual activities* | 5 (7) | 13 (19) | 50 (74) |
| Exercising/participating in sports* | 13 (19) | 11 (16) | 44 (65) |
| In the past month, how many hours per week have you participated in the following activities? | 6+ h/wk (coded 2), n (%) | <5 h/wk (coded 1), n (%) | 0 h/wk (coded 0), n (%) |
| Participating in hobbies* | 27 (40) | 11 (16) | 30 (44) |
| Participating in work/school/volunteering | 4 (6) | 4 (6) | 60 (88) |
| Would you say that you… | Yes (coded 2), n (%) | No (coded 0), n (%) | |
| Have a best friend to confide in | 58 (85) | 10 (15) |
Numbers reflect participants’ responses to each of the 18 items on the modified Community Integration Questionnaire. Items marked with an asterisk (*) were added for this study.
Question 1: Which Baseline Factors Are Associated With High Levels of Social Participation 1 yr After Amputation?
In the final multivariable model, greater social participation at 12 mos was associated with better premorbid mobility (β = 0.27, P = 0.02, confidence interval [CI] = 0.02–0.21), better baseline general mental status (β = 0.26, P = 0.02, CI = 0.24–2.84), and lower amputation level, such that individuals with either transtibial (β = 0.40, P < 0.01, CI = 1.70–9.45) or transmetatarsal (β = 0.41, P < 0.01, CI = 1.66–8.37) amputations fared better than those with transfemoral amputations. Baseline depressive symptoms, self-rated health, and social support were not retained in the model.
Question 2: Which Baseline Factors Are Associated With High Satisfaction With Social Participation 1 yr After Amputation?
In the final multivariable model, greater satisfaction with participation at 12 mos was associated only with greater baseline social support (β = 0.31, P = 0.01, CI = 0.02–0.14). Baseline depressive symptoms, self-rated health, general mental status, premorbid mobility, and amputation level were not retained in the model. We conducted a sensitivity analysis using weighted scoring of satisfaction ratings (such that more personally important activities were given greater weight). Results were similar but not identical; univariate associations were comparable, but in the final multivariable model with weighted scoring, 12-mo satisfaction with participation was associated with both social support and general mental status.
Question 3: Which Areas of Social Participation Matter Most to Individuals With Limb Loss?
One year after amputation, participants in this sample rated managing one’s own finances (mean [SD] = 8.7 [2.2]), having a best friend or confidant (mean [SD] = 8.1 [3.3]), and being able to visit friends and family (mean [SD] = 7.9 [2.2]) as the most important activities (on a 1 to 10 scale). Participating in paid employment, volunteering, and/or school was rated least important (mean [SD] = 4.4 [3.4], Fig. 1).
FIGURE 1.
Twelve-month ratings of satisfaction with specific domains of social participation. Activities are listed in order of their importance to participants, with longer bars representing more highly valued activities. The grey portion of each bar represents the percentage of participants who are satisfied with their level of engagement. *Items not originally from CIQ, added to better reflect common activities of the study population. +Rated importance of these activities was identical.
DISCUSSION
In the present study, different factors were associated with individuals’ level of social participation and satisfaction with their participation 1 yr after LEA. These results highlight the value of examining two facets of social participation: what people are actually doing and how satisfied they are with their participation. Consistent with previous studies,9,12 these results point to the importance of physical factors (e.g., amputation level), cognitive factors (e.g., mental status), and psychosocial factors (e.g., social support) in patient outcomes. We extended previous work8 by demonstrating that these factors had different relationships with the two facets of social participation: cognitive and physical factors predicted individuals’ level of participation, whereas social support predicted their satisfaction with participation. Levels of satisfaction varied widely for different types of social activities, and these activities did not have equal levels of importance in participants’ minds; in this sample, managing finances and maintaining close relationships were among the top priorities. The present findings are broadly consistent with the study by Levasseur et al.;8 here, too, level of social participation versus satisfaction with participation differed in their relationships with other variables, and social roles/relationships stood out as particularly important. In contrast, however, we found the relationship between participation and satisfaction to be much weaker (r = 0.23 versus 0.70).8 This may be the result of the different study populations (as the study by Levasseur et al.8 was not specific to individuals with LEA) or different measures used.
By examining participants’ unique priorities and their satisfaction with their ability to participate in valued activities, this study sought to answer the call for patient-centered approaches to defining and measuring rehabilitation goals. These results have implications for rehabilitation research and practice, highlighting the importance of identifying and supporting patients’ own unique goals. By tying rehabilitation therapy activities to patients’ specific values, motivation for therapies may increase, as may quality of life.13 These results also underscore the importance of the interprofessional rehabilitation team, because recreation, physical and occupational therapists, speech and language pathologists, psychologists, and other specialists make unique contributions in the diverse areas valued by patients.
Limitations
This study has several limitations that constrain the conclusions drawn. First, a notable limitation is the measurement of social participation. Although a well-validated measure was used, several modifications were made without performing a separate psychometric study The high correlation between the original CIQ items and our exploratory items suggests that these modifications were reasonable, but, nonetheless, the measure has not been fully validated in this form. Advances in measurement have been made in the previous several years; as such, our measurement strategy lacks some desirable features of newer measures (i.e., the PROMIS measure of social participation released after the inception of this study). There are unique benefits and drawbacks to measurement approaches that ask participants to rate a prespecified list of activities (rather than using open-ended questions or global ratings of participation).15 A benefit of our approach is that it provides detailed information about specific priorities, in a numerical format that is easy to analyze. A drawback is that this prespecified list may not capture all relevant activities and is less easily applied across diverse populations.
These findings are also limited in their generalizability. Our sample consisted of male Veterans in the United States with dysvascular amputations, primarily below the knee. These individuals may differ from others with limb loss in important ways, for instance, in their values and priorities regarding areas of social participation. We recruited individuals with ad-equate cognitive functioning who were undergoing their first dysvascular LEA and, as such, may be the healthiest of Veterans with dysvascular amputation. Veterans who died in the first year after LEA were also excluded from this sample, another reason that our sample is biased toward healthier individuals in this population. Missing data also shaped our sample: our participants had higher levels of depression symptoms and higher rates of marriage than those who did not complete social participation measures. In addition, detailed information about participants’ physical and social environments was not collected, which likely interacts with patient-level characteristics to influence outcomes.28
Nonetheless, this study’s strengths make valuable contributions to the literature. These include its prospective longitudinal design, its examination of two facets of social participation (level of participation versus satisfaction), and its detailed measurement of participants’ own prioritization of diverse areas of participation.
CONCLUSIONS
This study points to unanswered questions and future directions for research. Key questions concern the relative importance of individuals’ levels of social participation versus subjective satisfaction with participation: How can care providers optimize what people are actually able to do as well as their personal satisfaction with their activities? How do providers best measure these, given the need to balance detail (e.g., long customized lists of activities) with brevity and generalizability of our instruments? By attending to these questions and adopting a patient-centered view of rehabilitation outcomes, rehabilitation specialists can foster individuals’ access to, and participation in, activities that make their lives rich and meaningful.
Supplementary Material
Acknowledgments
This material is based on work supported by the US Department of Veterans Affairs, Office of Research and Development, Rehabilitation Research and Development (Merit Review A41241: Joseph Czerniecki, principal investigator, and Career Development Award B4927W: Aaron Turner, principal investigator). Writing of this article was also supported by the Office of Academic Affiliations, Advanced Fellowship Program in Mental Illness Research and Treatment, Department of Veterans Affairs.
Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.
Footnotes
The contents of this article do not represent the views of the US Department of Veterans Affairs or the United States government.
Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.ajpmr.com).
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