Utilization and Perception of Peer-Support After Lower Limb Loss in the United States: Potential Benefits on Mobility Outcomes

Abstract

Objective

To examine participants’ experiences with peer-support after LLL and the associations between the peer-support experience (perceived benefits and barriers) and mobility outcomes.

Design

Quantitative and qualitative descriptive study with a cross-sectional design.

Setting

National survey (distributed to 169 peer-support groups in 44 states in the US).

Participants

The survey was completed by 82 individuals with a major lower limb amputation (53% female, 54% over 55 years of age).

Main Outcome Measures

A 32-item survey to examine respondents’ experiences in peer-support activities. Prosthetic mobility was measured using the Prosthetic Limb Users Survey of Mobility (PLUS-M).

Results

Two out of three respondents received some forms of peer-support after amputation. Among them 75% reported peer-support having a positive impact on their outlook on life, and 78% reported that information gained from peer-support was helpful. Companionship, altruistic acts, and gaining information on how to cope with amputation were the top themes of why respondents enjoyed the peer-support experience. Nearly all (94%) respondents would recommend peer-support to other people with LLL. Individuals who received peer-support exhibited a trend of greater mobility (55^th vs. 36^th percentile on PLUS-M; p=0.055).

Conclusion

Individuals with LLL reported generally positive experiences regarding their engagement in peer-support activities. Peer-support groups are viewed as a helpful source for both information and emotional support, potentially benefiting functional and psychological recovery after amputation. Individuals who have received peer-support also exhibited greater mobility.

Graphical Abstract

Introduction

Despite advancements in medicine, the prevalence of limb loss in developed countries such as the United States remains high, as approximately one in every 190 Americans are living with the loss of a limb.¹ The prevalence of limb loss has been estimated to affect more than 3.6 million Americans within the next 25 years.¹ According to a recent research study, non-traumatic lower limb loss (LLL) has begun to increase in recent years, reversing the trend of steady decline observed in the previous decade.² This worrying trend is driven in large part by the resurgence of type II diabetes and is likely to worsen in the coming years.²

Post-LLL rehabilitation typically begins with wound healing and pain management, followed by therapy focused on improving mobility and function.^3–6 However, there is limited knowledge regarding the psychosocial recovery during limb loss rehabilitation. This is an important issue to consider, as limb loss has been demonstrated to significantly impact patients’ mental health, with anxiety and depression being common concerns.^7,8 An often suggested strategy to promote the psycho-behavioral adjustments after limb loss is amputee peer-support, however its utilization and the potential benefits to a patient’s physical and psychological functioning have not been empirically investigated.⁹

Peer-support in other medical conditions has been shown to be beneficial, as it helps to provide a sense of understanding for the patient from someone who has experienced a similar condition and its coping/recovery process.¹⁰ Being with understanding and relatable peers allows an individual to be oneself, help others, share personal experiences, and embrace life roles as an individual receiving support while also supporting someone else.¹¹ Incorporating peer-support in rehabilitation has been shown to lead to positive outcomes after brain injury,^12,13 and burn injury.¹⁴ A recent clinical trial also showed that peer-support was effective in promoting healthy life style and other behaviors for preventing and managing diabetes.^15,16 Patients who participated in a support group generally displayed greater social interaction, as well as activity participation including work and employment.¹⁴

Current evidence regarding the benefits of peer-support for individuals with LLL is limited. The general consensus is to recommend patients to seek peer-support due to its low cost and low risk of harm.^10,17 Evidence from a military hospital setting showed that learning from other individuals with personal experiences of recovery from LLL can lead to more successful adjustment for a new patient with LLL, in regards to work, family, and community living.¹⁸ In a recent study, Nathan et al. showed that many patients had an early goal of joining a peer support group with the intention to regain mobility and functionality to be better able to restore their way of living.¹⁹ However, the current body of knowledge on peer-support after limb loss lacks information from patients’ perspectives pertaining to the lived experiences and perceived benefits.

The purpose of this study was to quantitatively and qualitatively examine personal experiences with peer-support after LLL. Specifically, we examined the utilization and both positive and negative perceptions of peer-support experience in a national sample of individuals with LLL. Furthermore, we analyzed how peer-support experience is associated with mobility outcomes after amputation. Our primary hypothesis was that participants would express a generally positive experience with peer-support, and peer-support would have a favorable influence on their outlook on life. A secondary hypothesis was that individuals who have received peer-support would exhibit higher levels of mobility compared to those without such experiences.

Methods

Participants

A list of amputee support groups with representations from 44 states of the United States were assembled for this study. The support groups were identified through a nationwide search. The “Support Groups & Peer-support” resource page on the Amputee Coalition website was screened.²⁰ Extensive searches were conducted to identify points of contact for amputee care facilities in the Veterans Affairs Health facilities, civilian rehabilitation facilities, prosthetic clinics, and amputee-related social media pages/profiles on Instagram and Facebook. The assembled contact list contains organizations from 44 of the 50 states (Appendix A). In total, 139 groups were invited through email to distribute the survey to their group members and/or patients. The inclusion criteria were that the participant had to be at least 18 years of age, willing to participate, and have a major amputation of the lower limb, defined as an amputation at the ankle joint or above.

Procedure

The survey was developed to quantitatively and qualitatively explore the role of peer-support after amputation. The items were designed based on the aims and objectives of this research project (detailed below).

Survey development

The online survey was developed by the investigators including a rehabilitation researcher and physical therapist with 6 years of experience in organizing a local amputee support group (Las Vegas Amputee Support Group). After the initial draft of the survey was developed, it was further reviewed by another experienced amputee peer-support group organizer with 20 years of experience (Lively Limbs Amputee Support Group in Arizona) who is also a certified prosthetist, a physical therapist experienced in treating patients with LLL, and five persons with LLL to establish relevance and content validity. The finalized questionnaire (Appendix B) and survey procedure including the informed consent were approved by the University of Nevada, Las Vegas Biomedical IRB. The survey was hosted on the secured Qualtrics online survey platform (Qualtrics International Inc., USA).

The study survey consisted of 32 questions regarding respondents’ amputation including the timing, cause, and level of amputation, followed by the respondent’s experience and perception regarding peer-support after their limb loss. This included questions about how likely they would recommend others with LLL to join a peer-support group, and open-ended questions regarding their positive/negative experiences and how aspects of peer-support could be improved. The third part of the survey consisted of answering the 7-item short form Prosthetic Limb Users Survey of Mobility (PLUS-M) questionnaire. PLUS-M is a self-reported questionnaire designed specifically to assess functional mobility in individuals with limb loss.^21,22 We tested the survey on multiple devices including commonly-used web browsers on different personal computer platforms, tablets, and smart phones to ensure the survey format was consistent across different devices.

Survey Distribution

The online survey link was sent in emails to the identified contacts of the amputee service organizations (Appendix A). The study was also advertised on the identified limb loss-related social media pages and profiles through posts on Instagram and Facebook. The data collection spanned a 12-month period (March 2021-February 2022).

Data Analysis

All survey entries were deidentified before analysis. For quality control, once the survey was closed, we reviewed all respondents to confirm that they met the inclusion criteria and that the survey was completed properly. Respondent demographic characteristics were categorically described. Respondents’ experiences with peer-support, including timing of receiving support, how they learned about it, meeting frequency, preferred meeting format, and barriers to accessing peer-support were analyzed.

For the open-ended question regarding how the respondents feel about their peer-support experiences (i.e. question 19), a thematic qualitative analysis was conducted. Each response was mapped to a theme, and these themes were then evaluated to determine how they overlapped. One investigator with expertise in sociology and behavior analysis independently classified the responses to develop overarching themes that represent the responses of our survey participants. For instance, we classified “companionship” responses that indicated the need for validation, relatedness, and belonging. The responses that primarily reflected a desire in assisting other amputees and acquiring information to cope with life after amputation were classified as such, despite the fact that same responses occasionally also indicated a need for validation and belonging. The generated themes were further reviewed by two other investigators with extensive experience in post-amputation rehabilitation and amputee peer-support.

To test hypothesis 2, we compared the PLUS-M scores between individuals who received and did not receive peer-support (yes vs. no response to question 11: “After your amputation, have you participated in any organized amputee peer-support group activities [including interactions on the internet]?”) using independent t-tests. The PLUS-M raw score was converted to T-score for statistical analysis.²¹ Further comparison of the two groups (peer-support vs. no peer-support) regarding potential confounding factors such as age, time since amputation, cause (traumatic vs. non-traumatic), and level of amputation were conducted using independent sample t-tests and Chi-square tests as appropriate.

Results

One hundred and sixty-nine participants started the survey with 131 responses recorded. The response rate to individual questions varied and of the 131 recorded responses, 82 were completed fully and were included in our analysis. Responses excluded were from individuals who did not have a major amputation to the lower limb or written responses that could not be interpreted.

Respondent Characteristics

The mean age of the respondents was 56.4±10.9 (range 29–78) years, with about equal number of males and females (47 vs. 53%, respectively). Details of the respondents’ characteristics were summarized (Table 1). Among them, 50% of respondents were fewer than 5 years from their amputation. Ninety-three % of the respondents had been fitted with a prosthesis and used it regularly.

Table 1.

Respondent Characteristics (n=82)

Category	Percent of Respondents (%)
Age
35 years and younger	4%
36 – 45	6%
46– 55	34%
56 – 65	31%
66 +	23%
Gender
Male	47%
Female	53%
Ethnicity
Hispanic	3.6%
Non-Hispanic	91.6%
Decline to State	4.8%
Race
Caucasian	80.7%
African American	7.2%
Asian	1.2%
Native Hawaiian or other Pacific Islander	1.2%
Other	7.2%
Cause of Amputation
Dysvascular Disease	32.9%
Cancer	6.1%
Trauma	30.5%
Congenital	3.7%
Infection	9.8%
Other	17.1%
Level of Amputation
Transfemoral (including knee disarticulation)	28.9%
Transtibial	65%
Ankle disarticulation	4.8%
Other (did not state)	1.3%
Time Since Amputation
5 years or less	49.4%
6 – 20 years	34.5%
21 – 40 years	7.4%
41+	8.6%

Peer-Support Experience

Among respondents, 70% had participated in amputee peer-support group activities. The duration of involvement ranged from a few months (16%) to more than 5 years (27%). Most respondents participated in monthly meetings (50%; Table 2). The majority of the respondents preferred group meetings being conducted in an open discussion format (65%), followed by lectures (34%), one-on-one meetings or visits (31%), and online interactions (28%). When asked about who first told them about amputee peer-support, the responses varied, with healthcare staff during their post-amputation hospital stay and during rehabilitation being the most common (22 and 21%, respectively; Figure 1). When asked about when peer-support would be most helpful to them, the respondents indicated that receiving support after amputation and during rehabilitation would be most helpful (94%).

Table 2.

Frequency of participation in peer-support activities (n=82)

	Percent of Respondents (%)
Multiple times a week	6.1%
Once a week	6.1%
Once a month	50%
Once every 2–6 mo.	4.9%
Once every 6–12 mo.	2.4%
Once a year or longer	6.1%
Never attended any activity	24.3%

Figure 1:

Sources from which respondents first learned about Amputee Peer-Support (n=82)

The top two barriers to peer-support participation were issues related to COVID-19 (34%), and scheduling conflicts (21%). Lack of transportation, lack of a local peer-support group, and lack of meeting information from the local peer-support group combined to represent 27% of participants’ barriers (Figure 2).

Figure 2:

Barriers to Peer-Support Participation

Perception of Peer-Support Benefits and Altruism

Respondents generally agreed that peer-support is a positive experience and identified a number of benefits and behaviors (Figure 3). The two specific questions about altruism yielded the highest level of agreeance (i.e. “I try to help others in my support group, even if they do not help me” and “Peer-support group gave me an opportunity to help other amputees”). Almost all respondents would recommend joining a peer-support group to someone with LLL who is currently not a member of one (94%).

Figure 3.

Perceptions of Peer-Support Benefits and Altruistic Behaviors

Qualitative analysis of the responses (n=58) regarding what the respondents enjoyed most in their peer-support experience revealed three main, sometimes overlapping themes. The identified themes were: “companionship”, “altruistic acts”, and “gaining information on how to cope with amputation”. Many respondents expressed a sense of compassion, altruistic love, belonging, relatedness, and validation as well as encouragement and empowerment; some even referred to their experience in the peer-support group as “definitely life changing.” A large proportion of them (44%) participated in peer support group for companionship. Twenty-nine % of the respondents sought out peer-support in order to assist others, while the remaining 27% wanted to gain information about coping with amputation. They used peer-support to “connect with people who experience some of the things you do”, “learn from each other and inspire one another”, “bond with [like] others”, “share stories, successes, and struggles”, and “gain knowledge that helps [your] understanding of what [you] are experiencing mentally and physically”. Their participation in support group activities enabled them to “see other people like [me] and see how they solved issues” and gave them “a sense of comfort” and “emotional support from those experiencing similar challenges”. Peer-support helped reinforce the conviction that “[I’m] not alone in my struggle(s)” and their “fight against depression and selfishness and pity”. Furthermore, they valued the opportunity to “help others…navigate this new world and journey [they are] on” and offer “advice, support and empathy to the next new amputee”.

Effects of receiving peer-support on mobility function

Comparing the PLUS-M percentile scores between individuals who have received peer-support vs. those who have not, the peer-support group exhibited a trend of higher mobility (PLUS-M T-score: 51.4±10.8 vs. 46.8±11.3; p=0.055; CI=−1.07–10.33). Further comparison of the two groups showed that they were of comparable age (56.7 vs. 54.4 years; p=0.209), with no significant differences in amputation cause, level, and time since amputation (p=0.484, 0.564, and 0.325, respectively).

Discussion

Adjusting to life following LLL is a challenging and highly variable journey. Support from a variety of sources is often needed to facilitate recovery in different aspects of a patient’s life. Our findings supported the hypothesis that individuals with LLL have a generally favorable experience with peer-support, including positive perceptions of peer-support’s potential benefits to their physical and psychological wellbeing. In addition to receiving knowledge and information that help them cope with life after amputation, a high percentage of peer-support participants demonstrated altruism toward their peers. Our findings also showed a trend that individuals who received peer-support exhibiting greater mobility when compared to those who did not receive peer-support. Overall, our results provide preliminary evidence that receiving peer-support after LLL not only benefits the patients’ emotional well-being, it may also have a positive impact on their recovery of function.

It has been reported that after amputation, patients typically learn their basic prosthetic skills (i.e. donning and doffing of prosthesis, transferring, and basic gait) from clinicians such as prosthetists and physical therapists,²³ while advanced mobility skills are more effectively learned from other people with amputations.²⁴ Our findings agreed with findings from Williams et al. that social support after amputation is associated with improved mobility.²⁵ This phenomenon may be due to that amputee patients are more motivated when observing other individuals with limb loss who have successfully gone through the rehabilitation process including prosthetic and ADL skill training.^26–28 There is preliminary evidence showing that learning from peers with limb loss may prime the neurobehavioral system for more effective learning outcomes.^23,24 While the results from this cross-sectional study cannot imply causality, given that implementing amputee peer-support presents minimal risk and cost to most patients, future research should focus on the potential of incorporating peer-support for facilitating post-LLL rehabilitation including prosthetic mobility training.

Despite the many potential benefits, not all patients are informed about amputee peer-support after LLL. For example, Nathan et al. reported that the top reasons for individuals with LLL to not participating in an amputee support group were related to a lack of information and fear.¹⁹ Indeed, the various uncertainties facing patients after LLL are challenging and scary,²⁹ but this is precisely why early access to peer-support is important. These barriers may be alleviated by improving rehabilitation clinicians’ awareness of both local and online peer-support resources, and by incorporating peer-support as a part of standard post-LLL care.³⁰ Findings from our study are in support of this premise that 94% of the respondents said that peer-support would be most helpful during the hospital stay or the rehabilitation, which is consistent with the review findings from Reichmann et al.¹⁰ In the U.S., the Amputee Coalition created the Certified Peer Visitor program, and recently incorporated the Hospital Partnership program so that rehabilitation clinicians can have convenient access to trained amputee peer visitors in the inpatient setting.³¹ Involvement of amputee peer-support activities during post-LLL rehabilitation may facilitate patient education and clarifying the progression of care, such as prosthetic prescription and fitting, to the patients and their family.

Through the qualitative analysis of the open-ended responses in our survey, we found that in addition to gaining pragmatic information, respondents reported that the most enjoyable aspect of peer-support for them was the friendship and comfort they felt from other peers with similar experiences, allowing them to share and relate to each other’s struggles and successes. Many enjoyed sharing stories about overcoming obstacles, and creating a community with others who are either just beginning to learn a new way of living or are many years into it. The desire to share also reflected in that most respondents prefer group meetings being conducted in an open discussion format to lectures. Many individuals became leaders in their peer-support groups, as they felt the benefits for themselves and wanted to continue to empower others who may be struggling. The relatedness and the altruistic desire to help other people experiencing similar hardship may be part of a beneficial coping mechanism to their own challenges. The bonds they created out of their participation in peer-support activities may offer them the much-needed opportunities for meaningful and beneficial social attachments.³² These relationships may provide people with both emotional and instrumental support, as well as sources of inspiration, empowerment, empathy, care, and understanding. This type of coping methods has been found to boost hopefulness, decrease loneliness, and reduce psychological symptoms such as depression and anxiety in individuals with disabilities including amputation.^33–36

Based on our data, the top barriers to participating in peer-support after LLL were predominantly environmental. The lack of interest/benefit and conflict with group members together accounted for less than 10%. These findings are largely in agreement with previous studies on this topic.^19,37 For example, in a study of U.S. Veterans with chronic pain, Matthias et al. found that logistic challenges, including time commitment and financial burdens associated with meeting with peers were the most commonly cited barrier.³⁷ We believe the identified barriers to participating in peer-support should be interpreted as a positive opportunity, since most of these environmental barriers can be overcome with adequate resources. Remote or virtual reality meeting options, while further development is still needed in this regard,¹⁹ may also expand access of peer-support to more participants.

Peer-support for those in the limb loss community can come in a variety of forms, including meetings, education, and adaptive activity and exercise programs. A recent survey conducted by the Amputee Coalition revealed that physical and mental health priorities for individuals with limb loss are closely related.³⁸ Eliminating barriers to integrating physical and mental health care including peer-support in post-amputation rehabilitation, have the potential to drastically improve outcomes in this population. For example, camaraderie and inspiration offered when exercising with peers with limb loss may improve the perception of fitness and well-being.^39,40 We believe examining how social and psychological benefits of peer-support interact to enhance other outcomes after amputation, such as physical functioning, is an important area of rehabilitation research. Future research may focus on interventional strategies to promote access and participation continuity to peer-support and peer-based physical activity programs.

Limitations

The main limitations of this study were related to sampling. Our study time frame (March 2021 to February 2022) partially overlapped the social distancing period of the COVID-19 pandemic when gatherings were recommended against, particularly for certain high-risk populations in the U.S. This likely led to our findings that 34% of respondents stated COVID-19 was a significant barrier to their access to peer-support.⁴¹ In addition, participants in this study were reached via support groups. Therefore, some of the results, such as the accessibility of peer-support after amputation, will not be generalizable to the wider population of individuals with lower limb loss. The fact that more than 90% of the respondents were current prosthesis-users also indicates a potential sampling bias toward higher-functioning individuals. The cross-sectional design of the study precludes any interpretation about causation and temporal relationships. For example, it is possible that those who were more engaged in peer-support group activities would also have other traits that are beneficial to their functioning. Future study with a longitudinal design is needed to examine how receiving peer-support contributes to functional recovery after LLA.

Conclusions

Individuals with LLL reported generally positive experiences regarding their engagement in peer-support activities. Peer-support groups are viewed as a helpful source for both information and emotional support, benefiting functional and psychological rehabilitation after amputation. Future research in this area is essential and should explore how peer-support can be incorporated for improving the effectiveness and patient experience of rehabilitation after LLL.

Highlights.

• Peer-support after lower limb loss is well-received by most patients in the U.S.

• Receiving peer-support may have both psychological and physical benefits.

• Main reasons for peer-support: companionship, altruism, and gaining information.

• Main barriers to accessing peer support is scheduling conflicts.

• Social distancing during COVID-19 significantly impacted access to peer-support.

Abbreviations:

ADL

activities of daily living

CI

confidence interval

LLL

lower limb loss

PLUS-M

Prosthetic Limb Users Survey of Mobility