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Original Research Article

Functional and Psychosocial Status of Haitians Who Became Users of Lower-Limb Prostheses as a Result of the 2010 Earthquake

Randolph, Marilys G. PT, PhD; Elbaum, Leonard PT, EdD; Wen, Pey-Shan OTR/L, PhD; Brunt, Denis PT, EdD; Larsen, Jessy MD; Kulwicki, Anahid PhD, RN, FAAN; De la Rosa, Mario PhD

Author Information
Journal of Prosthetics and Orthotics: October 2014 - Volume 26 - Issue 4 - p 177-182
doi: 10.1097/JPO.0000000000000039
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Abstract

The January 12, 2010 earthquake devastated Port-au-Prince, the capital of the Republic of Haiti, and its surroundings. The 7.0 Richter scale earthquake caused a large number of casualties and deaths. The estimated number of casualties was 300,000, including 1200 to 1500 traumatic or surgical amputations.1 Before the earthquake, there was only one public provider of prosthetic and orthotic devices and related rehabilitation services. This facility was severely damaged by the earthquake. The international response to the disaster in Haiti was intense and contributed to the saving of lives immediately after the earthquake. However, this response also overwhelmed a weak Haitian medical infrastructure and resulted in fragmented interventions as well as poor coordination and documentation of care.1 Surgical amputation and follow-up rehabilitation services by several nongovernmental organizations (NGOs) helped a sizable population of individuals faced with limb amputations to obtain basic follow-up care. Prostheses were provided by NGOs that came to help in the fabrication of prostheses and training of technicians in prosthetic and orthotic fabrication. Traumatic loss of limbs in natural disasters and wars can be catastrophic for individuals with sudden limitations in functional activities, mobility, and social adaptations. Before the earthquake of January 2010, it was recognized that rehabilitation services in Haiti for people with amputations was insufficient to meet the prevalent needs.2 It has been reported that, within 6 months of the earthquake, 600 patients received limbs from the various providers, an astonishing accomplishment in view of the magnitude of the disaster.3 However, the status of prostheses users in the postearthquake environment in Haiti is not well known. The purpose of this study was to describe the functional and psychosocial status of a subgroup of Haitian adults who underwent lower-limb amputation as a result of the 2010 earthquake and who are current users of unilateral lower-limb prostheses.

LITERATURE REVIEW

Trauma due to natural disasters, wars, and accidental events often results in surgical interventions such as amputations, fasciotomies, and external fixation of fractures.4 It has been established that, in the management of natural disasters, coordination of services from short-term lifesaving measures to long-term rehabilitation services and follow-up is very important to ensure the continuity of care and better outcomes.5 In low- and middle-income countries (LMICs) faced with disasters, limb amputation postoperative care and rehabilitation services as well as psychological support are critical to provide individuals with the needed functional abilities for a better quality of life.3,5,6 In prospective studies of the humanitarian response to the earthquake in Haiti, several factors are identified as impediments to better long-term outcomes for injured people1,3,5: 1) the destruction of a health care system that was already weak and insufficient for the population1; 2) a massive increase in NGOs without previous knowledge of the terrain before the earthquake that came to help in dealing with medical emergencies created by the earthquake; as well as 3) an initial lack of coordination among agencies and the government, which resulted in fragmented interventions and lack of planning for long-term needs of injured people. As a result of musculoskeletal injuries, it is currently well documented that 1200 to 1500 amputations were performed in the days and up to 5 weeks after the earthquake.1,5,6 However, records of surgical interventions and the need for that intervention are not standardized and accessible in many cases.1 On the basis of the lack of standardization and lack of coordination of services immediately after the earthquake, the functional outcomes were not primary considerations in numerous cases. Scarcity of documentation of patients before and after the amputation affects the ability to assess systematically the immediate or long-term outcomes for these individuals.

It is well recognized, on the basis of many studies, that traumatic amputations in developing and developed countries result in profound changes in the quality of life of individuals.7 Several factors affect the quality of life after amputation: pain, drastic changes in functional abilities, psychosocial adjustment to loss of a body part, and impact on employment. Surveys of traumatic leg amputations in developed countries such as the United Kingdom8 and the United States9 showed that a multidisciplinary team approach is fundamental to positive outcomes in physical capabilities and psychosocial adjustment of individuals with limb amputations. Functional mobility after lower-limb amputation is one of the primary goals of rehabilitation. In addition, quality of life of prosthesis users is also an important aspect of rehabilitation. To assess the rehabilitation intervention, many assessment tools are available. Researchers have used performance tests and ambulation activities to assess functional limitation, energy expenditure, and long-term use of the prosthetic device by patients.9 Patient-centered measures using questionnaires and interviews have been used to assess the quality of life and psychological adjustment to lower-limb amputation.7,8

In postearthquake Haiti, the assessment of functional abilities and psychosocial adjustment to lower-limb prosthesis use needs to be documented. The circumstances surrounding amputation due to traumatic events and the lack of purposeful coordination of services in Haiti make the assessment of functional and psychosocial adjustment challenging. To our knowledge, only one study has reported functional satisfaction and psychological adaptation for individuals with limb amputations and limb preservation after the Haiti earthquake in 2010.6 In this study, functional satisfaction was addressed by one question according to a 4-point scale (not satisfied, poorly satisfied, satisfied, very satisfied) and did not measure functional abilities. Their findings specifically for lower-limb prosthesis users were limited because they did not assess functional abilities and their sample was heterogeneous.

Assessment measures specific to prosthesis users were developed to evaluate functional and psychosocial outcomes. The Trinity Amputation and Prosthesis Experience Scales10 (TAPES), a self-reported questionnaire, is designed for limb prosthesis users. The TAPES is a valid assessment that captures functional capabilities and psychosocial adjustment.11 The Locomotor Capability Index12 (LCI), a valid and reliable self-reported measure, focuses on basic and advanced locomotor abilities of individuals when using their prosthesis.13 To understand the functional capabilities and psychosocial adjustment of lower-limb prosthesis users in Haiti, more studies are needed. The purpose of this study was to describe the functional and psychosocial status of a subgroup of Haitian adults who underwent lower-limb amputation as a result of the 2010 earthquake and who are current users of unilateral lower-limb prostheses.

METHODS

A survey design and a gross screening examination were used to achieve the purpose of this study. The questionnaires were administered from October 2011 to June 2012 verbally to individuals who had a unilateral lower-limb amputation as a result of the earthquake of January 2010.

PROCEDURE

This study was conducted in collaboration with Les Centres GEISKIO (the Haitian Group for the Study of Kaposiś Sarcoma and Opportunistic Infections), a large nonprofit health care organization in Port-au-Prince, Haiti, from October 2011 to June 2012. This organization was established and continues to be operated by Haitian physicians and is focused primarily on infectious diseases. However, the organization became a first responder immediately after the earthquake and provided space for rehabilitation services immediately after the earthquake and during the course of the study. The rehabilitation division was staffed by one physiatrist, one orthopedic surgeon, and four rehabilitation technicians trained on site. Approval was obtained from the institutional review board (IRB) of Florida International University and the GHESKIO Ethics Committee, in compliance with the Haitian Health Ministry before recruitment of participants.

Informed consent and instruments were all translated in Haitian Creole and translated back in English as required by the IRB. Translation from English to Haitian Creole was done by a physical therapist, two physical therapy students, and a nurse fluent in Creole. Review of the translation was done during several meetings with the Haitian staff to define the accuracy of certain terms in Creole and the original intent of the questionnaire. This process was followed by a back translation in English, which was compared with the original English versions of the questionnaires.

TRAINING OF STAFF

The training of the interviewers was a significant component of the study. All staff members were trained to complete an examination that would certify their understanding of ethical standards for a study involving human subjects. This training is a standard practice of the health care organization.

Several procedures were implemented to minimize inconsistencies in the data collection. Each staff member was trained on how to conduct the interview and administer only one specific questionnaire. One individual was responsible for going over the informed consent with each participant. The most experienced staff member was trained to administer the Locomotor Capabilities Index (LCI); one staff member was trained to administer the TAPES; and one field worker for recruitment was trained to interact with the amputee population in the vicinity of the health care site and other agencies that were seeing lower-limb prosthesis users. The training of the staff was critical for the reliability of the data collection. The verbal administration of the questionnaires was essential because of the high rate of illiteracy in Haiti. The first 50 interviews were recorded by audiotapes and reviewed by the principal investigator for accuracy and assessment of the staff’s performance in administering the questionnaires. After the first 50 reviews, minor adjustments were made, and one recording was made for every ten interviews. A series of assessments were administered; however, for the purpose of this study, we presented only the TAPES and the LCI.

PARTICIPANTS

The participants (N = 150) were recruited throughout Port-au-Prince by a trained field worker who sought out and spoke with individuals with amputations in various settings including permanent and temporary residences (including tents) as well as prosthetic and orthotic clinics of NGOs and through word of mouth among amputees. Individuals who met the criteria for inclusion in the study (n = 140) were invited to participate. Criteria for inclusion in the study were 1) a history of a unilateral lower-limb amputation as a result of injuries or traumatic amputation resulting from the January 12, 2010 earthquake; 2) reported regular use (4–12 hrs) of lower-limb prosthesis; and 3) age of at least 18 years at the time of the study. Potential participants were provided a free physical examination by a physiatrist, who also served as the project coordinator on site. Potential participants who required rehabilitation services were seen on site, and those requiring prosthetic repair or adjustment were given referrals to the appropriate clinics known to provide these services.

INSTRUMENTS

TRINITY AMPUTATION AND PROSTHESIS EXPERIENCE SCALES

The TAPES10 is an instrument designed to assess the personal experience as well as adjustment to lower-limb amputation and prosthesis use by amputees. This instrument was shown to be valid and reliable in English and when translated into Farsi (Persian).14–16

The TAPES consists of three domains: psychosocial adjustment, activity restriction, and satisfaction. The psychosocial adjustment domain, rated by a 5-point scale (strongly disagree, disagree, neither agree nor disagree, agree, and strongly agree), is composed of three subdomains (general adjustment, social adjustment, and adjustment to limitation), with a total of 15 questions. A higher score indicates a higher level of adjustment. The activity restriction domain, rated by a 3-point scale (limited a lot, limited a little, not limited at all), is considered as a unidimensional construct,11 with a total of 12 questions. A higher score indicates a higher level of restriction. The satisfaction domain is originally rated by a 5-point scale (very dissatisfied, dissatisfied, neither dissatisfied nor satisfied, satisfied, very satisfied), but in this study, the translated version of the TAPES uses a 4-point scale (very dissatisfied, dissatisfied, neutral, very satisfied). The satisfaction domain measures satisfaction with prosthesis in functional and aesthetic aspects, with a total of eight questions. A higher score indicates a higher level of satisfaction.

LOCOMOTOR CAPABILITIES INDEX

The LCI12 is a self-report measure of ambulatory skills with the prosthesis on. The LCI consists of 14 tasks commonly encountered in everyday life. It has been reported to be a valid, reliable, and sensitive instrument13 and has been translated into several languages. The LCI assesses two domains: basic activities and advanced activities with a 4-point rating scale (“no,” 0; “yes, if someone helps me,” 1; “yes, if someone is near me,” 2; and “yes, alone, with ambulation aids”, 3), and each domain contains seven items. Higher scores indicate better locomotor capability.

DATA ANALYSIS

Data were analyzed using SPSS version 18.17 Descriptive statistics and t-test were conducted to examine the research questions.

RESULTS

The participants’ demographic information is presented in Table 1. The participants ranged in age from 18 to 64 years, with a mean (SD) age of 34.9 (11.97) years. Seventy-two of the participants were women (51.4%), and 68 were men (48.6%). Type of amputations is presented in Table 2. The mean (SD) time that the participants had their current prosthesis was 13.3 (6.48) months.

T1-3
Table 1:
Demographic information
T2-3
Table 2:
Type of amputations

TRINITY AMPUTATION AND PROSTHESIS EXPERIENCE SCALES

PSYCHOSOCIAL ADJUSTMENT DOMAIN

The paired t-test showed that the mean of the general adjustment subdomain and the mean of the adjustment limitation subdomain were significantly higher than the mean of the social adjustment subdomain (p < 0.001). The TAPES subdomain scores are presented in Table 3. In the general adjustment subdomain, 93.5% of the subjects agreed or strongly agreed with the statement “[Overall] I am doing OK with the artificial limb,” and 93.3% agreed or strongly agreed with the statement “I have gotten used to wearing an artificial limb.” In contrast, in the social adjustment subdomain, 91.2% of the subjects disagreed or strongly disagreed with the statement “I don’t mind people asking about my artificial limb,” and 81.3% disagreed or strongly disagreed with the statement “I don’t care if somebody looks at my artificial limb.” In the adjustment to limitation subdomain, an approximately equal number of participants agreed and disagreed with the statements in this subdomain. For example, 46.2% of the participants agreed or strongly agreed with “being an amputee means that I can’t do what I want to do,” whereas 49.1% of the participants disagreed or strongly disagreed with this statement.

T3-3
Table 3:
Trinity Amputation and Prosthesis Experience Scales subdomain scores

ACTIVITY RESTRICTION DOMAIN

The activities that were most often cited as limited a little or a lot were “climbing several flights of stairs” (88.8%) and “walking 100 meters” (91.8%). Capabilities for “maintaining friendships” was perceived as limited a little or a lot by 84.2% of the respondents, and “visiting friends” was cited by 66.3%. However, 89.6% of the subjects perceived that their ability to “go to work” was not limited at all.

SATISFACTION DOMAIN

No significant difference was found between the aesthetic satisfaction subdomain and the functional satisfaction subdomain. The highest dissatisfied areas regarding the prosthesis were color and weight (28.5% and 26.4%, respectively).

COMPARISON BETWEEN TRANSTIBIAL AND TRANSFEMORAL PROSTHESIS USERS

The transtibial prosthesis users showed significantly higher scores in general adjustment, adjustment to limitation, and functional satisfaction than the transfemoral prosthesis users (p = 0.01, 0.01, and 0.03, respectively). In contrast, scores for social adjustment, activities restriction, and aesthetic satisfaction did not differ between these two groups (Table 4).

T4-3
Table 4:
Comparison between transtibial and transfemoral prosthesis users

LOCOMOTOR CAPABILITIES INDEX

Scores on the LCI can be computed for both basic and advanced activities; as might be expected, scores were significantly lower for advanced activities (15.5 [4.4]) relative to basic activities (19.1 [2.7]) (p < 0.001). The LCI showed that more than 90% of the subjects were physically independent in self-care (bathing, dressing, eating, eliminating); fewer were independent while walking on uneven ground or in inclement weather (69%). The scores of the LCI for basic and advanced activities did not differ between the transtibial and transfemoral groups (Table 4).

DISCUSSION

This study describes the functional and psychosocial status of Haitian adults who underwent lower-limb amputation as a result of the 2010 earthquake and who are current users of unilateral lower-limb prostheses.

In this study, the TAPES showed that, in the psychosocial domain, the lower-limb prosthesis users had the most difficulty in social adjustment. In addition, in the satisfaction domain of the TAPES, there was no significant difference between aesthetic and functional satisfaction of the users.

Specifically regarding transtibial and transfemoral prosthesis users, we found that the general adjustment, adjustment to limitation, and functional satisfaction subdomains were significantly different between these two groups, with the transfemoral prosthesis users experiencing more difficulties. Interestingly, the difference between the transtibial and transfemoral groups was not identified by the LCI. This may indicate that the TAPES is a more sensitive measure than the LCI in this population. As expected, the transfemoral prosthesis users had the most difficulty to adjust to prosthesis use in the functional aspects of their daily lives. The increased energy expenditure and biomechanical changes in ambulation for the transfemoral prosthesis user is well documented.7,18,19 However, both groups experienced the same challenges in social adjustment. Most of the participants were concerned about people asking about their artificial limbs; they do not want to talk about their artificial limbs; they were self-conscious about limping. Studies have shown that better social adjustment is related to the satisfaction of prosthetic appearance, functional improvement with prosthesis, and low level of body image disturbance.20 In this sample, the body image was disturbed regardless of the level of the amputation. Our findings reinforce the concept of a comprehensive intervention in the immediate aftermath of a disaster, especially in developing countries. The rehabilitative team in the immediate and the long-term phase of disaster relief should include psychological interventions to optimize best outcomes.7,8,21

The LCI showed that restrictions were mostly confined to climbing stairs and uneven surfaces. The LCI data showed a significant level of difficulty in advanced activities of daily living such as negotiating stairs and walking on uneven ground for a majority of the individuals in this study. This particular aspect of the status for prosthesis users in Haiti after the earthquake is particularly significant because most roads are not paved and access to homes may require stairs and walking on slopes and hills. Despite the significant functional limitation seen in advanced ambulation activities evident in the LCI questionnaire and in the TAPES, the participants responded overwhelmingly that these limitations would not interfere with their ability to work. These findings may reflect, in a context of high unemployment, the very strong desire to work to support oneself and one’s family.5 However, the presence of a disability and the numerous environmental challenges represent a significant disadvantage for these individuals. In Haiti, the environmental barriers for individuals with disabilities are very significant in public transportation, housing, and walking surfaces. In addition, the rainy seasons usually bring in flooding and mudslides in many areas of Port-au-Prince, which constitute a significant barrier for prosthesis users in ambulation.

Studies of psychosocial adjustment have reported specific factors that influence best outcomes for prosthesis users.7,22 These studies reported that the adjustment to amputation depended on amputation surgical procedure, timely prosthetic fitting, and comprehensive rehabilitation services. The surgical interventions performed in the immediate response to the earthquake in Haiti lacked a comprehensive understanding of the impact of surgical techniques used for amputation on prosthetic fitting.1,3,4 Regarding prosthetic fitting, the mean waiting time for our sample was 10 months, as opposed to a mean of 3 to 6 months in countries with more resources.9,22 Rehabilitation services were confined to physical rehabilitation and provision of prostheses in our sample. Psychological intervention was not part of the standardized intervention provided to this population. All of these factors compromise the opportunities for best outcomes.

In this study, psychosocial adjustment to the amputation and prosthesis use was significantly less than the functional aspect. These results are not different from those seen in other studies regarding traumatic amputation.8 The challenges for psychosocial adaptation for these individuals in Haiti are compounded by the lack of infrastructure to ensure access, rehabilitative services follow-up, and psychological support in the long-term.

Some of the limitations of this study are noted. Instead of self-report locomotion ability, a performance test might be more accurate in assessing their ambulation capacity. We did not collect education and socioeconomic status data for this study. Including this information might offer a more comprehensive picture of the participants’ adaptation to their limb loss.

CONCLUSION

Traumatic amputation is a devastating consequence of a natural disaster. In Haiti, the functional adjustment and the psychosocial adjustment of prostheses users present numerous challenges. Psychosocial adjustment is significantly more difficult than functional adjustment and will influence significantly the quality of life of individuals. The challenges faced by the population of individuals with amputation are many, such as environmental barriers, unemployment, and access to prosthetic needs. In addition to independence in self-care activities, individuals must be able to navigate in their physical environment to improve the quality of their lives through work and social interaction. Further research is needed to investigate the needs of transtibial and transfemoral amputees in this challenging environment to optimize their reintegration into their community through psychosocial and work retraining interventions.

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Keywords:

psychosocial; function; Haitian; prosthesis; earthquake; TAPES; LCI; amputee

© 2014 by the American Academy of Orthotists and Prosthetists.