The Psychosocial Impact of Lower Limb Amputation on Patients and Caregivers

Introduction The impact of amputation on patients' social and psychological well-being has been demonstrated. However, the experiences and requirements of amputees during the adjustment phase vary between amputees. Methods This study aimed to assess how amputation affects psychosocial life and the quality of life (QOL) in the amputees, the psychosocial processes involved in adjusting to amputation and a prosthesis, and the burden of amputees on caregivers in Saudi Arabia. A cross-sectional study was placed from November 2021 to February 2022, and it included all amputees and caregivers available at the time of the study. Result A total of 239 amputees and 219 caregivers were included in the study. The average level of the physical component score (PCS) was 63.5% ± 14.6% and 57.3% ± 12.9% for the mental component score (MCS). There is a significant positive correlation between psychological adjustment total and satisfaction with prosthesis with PCS and MCS dimension of QOL. Considering the QOL, PCS mean score was significantly higher among prosthetics users than among non-users (68.2 ± 15.5 vs. 59.9 ± 12.8, respectively; P=.001). Also, the MCS score was significantly higher among prosthetics users than among non-users (59.5 ± 12.4 vs. 55.5 ± 13.0, respectively; P=.001). A total of 15.1% of caregivers experienced a high burden, while 23.3% had a mild to moderate burden, but 61.6% had no or little burden. Conclusion Our finding shows there are correlations between psychological adjustment total and satisfaction with prosthesis with PCS and MCS dimension of QOL. The findings emphasize the importance of psychological and social support to be considered in caregivers’ health assessments. Also, the physical health of the caregivers should be fundamental in their lives as it minifies the caregiver burden. Further studies should be considered with a larger sample of amputees and longitudinal studies to evaluate the adaptation changes over time, caregiving burden, and family functioning.


Introduction
Amputation results in permanent disability and a significant alteration in the individual's life and performance. Amputations of the upper and lower extremities are connected with psychological problems and different levels of physical impairment [1]. Lower limb amputation (LLA) affects an individual's social and psychological, and well-being in addition to causing lasting physical changes. As a result, it can affect various elements that influence a person's Health Related Quality of Life (HRQOL) [2,3]. LLA accounted for 73.5% of all limb losses, with traumatic injuries and vascular disease accounting for most cases [4]. LLAs are mainly an unavoidable procedure in the late stages of several diseases, including peripheral arterial occlusive disease (PAOD), diabetes mellitus (DM), oncological disorders, infection, or trauma, and acts as a dramatic influence on a patient's life. Amputation incidences in various countries vary from 1.2 to 4.4 per 10,000 people [5,6]. In 2018, medical rehabilitation facilities and departments in Saudi Arabia recorded 3745 incidents of amputation [7]. Diabetes was the primary cause of more than half of these cases, while other factors involved malignancies, traffic accidents, and other accidents. Due to undisclosed reasons, twothirds of amputees do not obtain rehabilitation assistance [8]. Vascular problems are the leading cause of LLAs in developed countries [5,9,10], whereas traumatic accidents are the leading cause of amputation in developing countries [10]. After an amputation, a person's body structure and function are altered, which affects their level of activity and involvement in society [11]. Amputation results and the long-term functioning of amputees are also influenced by environmental and personal factors [11,12]. An important factor in amputation recovery is psychosocial support, which has been shown to positively impact recovery [13]. Prostheses can have a major impact on patients' participation, movement, and psychological functioning following amputation, therefore altering their quality of life (QOL) [14][15][16]. QOL was shown to be improved by the absence of phantom pain, residual limb pain, and the ability to walk longer distances [17]. Depression is one of the most widely utilized indicators of psychosocial response following amputation. Some patients have stated that depression caused them to wear their prostheses less frequently in the period following their amputation [18]. Patients with long-term amputations are more likely to be depressed, linked to more activity restrictions [19], and feelings of weakness [20]. Research has repeatedly noticed that individuals with LLAs have higher levels of anxiety and depression than the general population [13,21]. LLAs results in emotional, psychological, physical, and physical problems, needing caregiver help with rehabilitation and general health care [22][23][24]. Amputation's effects on patients' families may be better understood by the medical community if caregivers' enormous burdens are highlighted and their frequently unmet demands are brought to light [25]. The impact of amputation on a patient's family can be better understood by highlighting the heavy burden carried by caregivers and calling attention to their frequently unmet needs [25]. Since this subject is less frequently discussed in Saudi Arabia, we proceeded to conduct this study aiming to assess how amputation affects psychosocial life and the quality of life in the amputees, psychosocial processes involved in adjusting to amputation and a prosthesis, and the burden of amputees on caregivers in Saudi Arabia.

Participants
Participants in this study were from Saudi Arabia who had their LLAs and caregivers who were over the age of 18. The cross-sectional study was conducted from November 2021 to February 2022, and it included all amputees and caregivers available at the time of the study. A total of 458 participants were included in the study provided they agreed to participate in the study, both Saudi and non-Saudi nationals, and were above the age of 18. The exclusion criteria included any participants below 18 years old. The Institutional Review Board at King Faisal University authorized this research with research No. KFU-REC-2021-OCT-EA00073. The research's purpose was explained to the participants, and informed permission was taken prior to the start of the research.

Amputee-Related Questionnaire
Structured questionnaires were used to gather information. They contained sociodemographic and medical data on the participants (gender, age, educational, marital, and work status, as well as any comorbidities). They also included information about amputations, such as the type of amputation, reason for amputation, time since receiving a prosthesis, if any, residual limb pain, and phantom limb pain.

Quality of Life
Short-Form Health Survey (SF-12) was used to assess QOL, and it is an internationally validated tool. Eight scales make up the multifunctional SF-12, a short health survey with two summary scores, the physical component summary (PCS) and the mental component summary scores (MCS) [26].

The Trinity Amputation and Prosthesis Experience Scales (TAPES)
A validated tool for use in individuals after amputation was used to measure the adaptations to the amputation and the prosthetic limb, TAPES is a multidimensional questionnaire that evaluates adjustment to amputation and prosthesis use. It consists of three psychosocial adjustments, three activity restrictions, and three prosthesis satisfaction subscales and was developed specifically to be used with people who have had a lower limb amputation [27].

Depression, Anxiety, Stress Scale (DASS)
This 42-item questionnaire was used by Lovibond et al. [28] in 1995 to assess levels of stress, anxiety, and depression. Its abbreviated form contains 21 questions, with seven questions assigned to each of the feelings of depression, anxiety, and stress, and is evaluated on a 4-point scale from 0 to 3.

Caregiver-Related Questionnaire
The caregiver's age, gender, level of education, monthly income, relationship to the amputees, period of care, time spent together per day, and the presence of any diagnosed physical or psychological disease, as well as the use of a sociodemographic data form.
The Zarit Burden Interview  ZBI questionnaire was used to assess the amount of care burden in chronic diseases. The ZBI is a commonly used measure for describing caregiver burden that has been well-validated in a variety of caregivers. A score of ≥17 is suggested as an indicator of high caregiver burden [29].

Statistical analysis
Following data extraction, it was reviewed, coded, and entered into Statistical Package for Social Sciences (SPSS) version 22 (IBM Corp., Armonk, NY, USA). All statistical analysis was done using two-tailed tests. P value less than 0.05 was statistically significant. All parameters, involving respondent age, gender, insurance, nationality, living situation, psychological status, and amputation level, were subjected to descriptive analysis depending on frequency and percent distribution. Also, medical history was graphed using bar charts. A mean score with standard deviation was used to display TAPES among study patients. The frequency table for prosthesis data including the level of satisfaction, duration, and related comorbidities was displayed in the frequency table. SF-12 was graphed for its main domains (PCS and MCS) using the box-plot diagram. Relations between TAPES, and SF-12 PCS and MCS scores were tested using Pearson correlation coefficient analysis. Mental health including the level of depression, anxiety, and stress was assessed and frequencies using the DASS scale after summing up all discrete items scores for each domain and categorizing reference to the original scale-guided cut-off points. One-way ANOVA was used to test for a significant relation between PCS and MCS subscales and patients' mental health. To determine the relationship between DASS and SF-12, an independent t-test was performed. Crosstabulation was used to assess the distribution of amputee's psychological health status by their use of prosthetics. Relationships were examined using the exact probability test for small frequency distributions and the Pearson chi-square test. Table 1 shows the bio-demographic data of amputees who underwent amputation in Saudi Arabia. A total of 21.8% of the study group was aged 18-25 years, 25.1% aged 36-45 years, and only 14.2% aged more than 55 years. 69.9% of amputees were males and 84.9% were Saudi. Considering marital status, 38.1% were single, and 47.3% were married. As for educational level, 18.4% had below the secondary level of education while 34.3% had a university level of education. A total of 28.5% of the amputees were retired, and 23.4% were employed while 14.6% were not working. Exactly 45.6% had insurance and 18% were diagnosed with psychological problems. A total of 79.1% live with their families and 5.9% live alone.

Bio-demographic data
No. %  Table 2 shows a total of 42.3% of the amputees had below-knee amputation, 26.4% had amputation above the knee, through the knee among 17.2%, and bilateral among 14.2% of amputees. The most reported causes of amputation were trauma (39.3%), followed by DM (23.4%), vascular diseases (12.1%), and cancer reported at 7.1%. By the time of the study, an exact 19.7% of the participants had their amputation for less than one year, 46% had amputation for one to five years, and 34.3% had amputation for over five years. A total of 43.5% of the amputees used prosthetics. A total of 24% used prostheses for less than one year, 44.2% used them for one to five years, and 13.5% used them for more than 10 years. Exactly 27.9% of the amputees who used prostheses experienced residual limb pain and 61.5% experienced phantom limb pain.   Figure 1 shows chronic health problems among amputees undergone amputation, Saudi Arabia. The most reported chronic health problem was DM (35.1%), followed by hypertension (HTN) (22.2%), neurological diseases (9.2%), and muscular disorders (7.9%); 46.4% had no chronic health problem.            Table 7 shows the relation between prosthetics uses among amputees with their psychological health and QOL. Psychological health showed insignificant association with prosthetics use neither for depression, stress not anxiety. Considering the quality of life, PCS mean score was significantly higher among prosthetics users than among non-users (68.2 ± 15.5 vs. 59.9 ± 12.8, respectively; P=.001). Also, the MCS score was significantly higher among prosthetics users than among non-users (59.5 ± 12.4 vs. 55.5 ± 13.0, respectively; P=.001).

DASS & SF-12
Do you use prosthetics?       Figure 3 shows a total of 15.1% of caregivers experienced high burden, while 23.3% had mild to moderate burden, but 61.6% had no or little burden.

FIGURE 3: Overall degree of burden among amputee caregivers, Saudi
Arabia.

QOL and TAPES
Individuals who underwent lower limb amputations exhibited worse QOL when compared to the entire population. This result has been supported by several additional research, suggesting that amputation is a major life event that can have long-term effects on QOL [30][31][32][33]. Amputation of a limb is a life-altering event having social, mental, psychological, and spiritual consequences [1]. These problems originate from their incapacity to carry out everyday tasks, remain independent, and support their families [34]. According to a large cohort research done in Saudi Arabia, the country is seeing a significant growth in type II diabetes, with a prevalence placing among the top 10 countries worldwide. Furthermore, the prevalence of diabetesrelated morbidities is among the highest in the world, with 2.05% for foot ulcers and 1.06% for amputations. When compared to individuals with diabetic foot ulcers, amputees had the lowest overall survival rate [35][36]. In the QOL, the average level of the PCS was higher than the MCS in this study. In our study, there is a significant positive association between psychological adjustment dimensions and satisfaction level with prosthesis with PCS and MCS dimensions QOL. While there is a significant negative correlation between activity restriction with PCS and MCS. In a similar study by Sinha et al. [37] the effects of social adjustment, adjustment to limitation, and functional restriction on QOL were shown to be significant. Both PCS and MCS are significantly and positively linked with functional restriction, while PCS is more strongly associated. Social adjustment is linked to both PCS and MCS in a significant and positive direction, with MCS having a greater correlation. Gallagher and MacLachlan (2004) reported that functional restriction was significantly and negatively linked with the physical health domain of The World Health Organization Quality of Life (WHO-QOL) [38]. Functional restriction has been shown to be connected significantly and negatively with the physical, psychological, and social health areas of WHO-QOL in research by Deans et al. [39]. The physical aspect of QOL was additionally found to be more negatively affected by the activity restriction scale. Moreover, Weiss et al. [40] discovered that the capacity to do daily activities is the most significant indicator of QOL. Deans et al. [39] found that restricting athletic activity had a significant detrimental impact on the physical health area of WHO-QOL. Activity restriction and aesthetic satisfaction were shown to have the greatest impact on QOL, whereas social adjustment and, to a lesser extent, functional restriction influenced QOL. PCS and MCS of QOL may be affected by residual stump pain and phantom limb pain. Residual limb pain and phantom limb pain can be postulated to affect the physical and mental components of QOL. In our study,27.9% of the participants who use prostheses experienced residual stump pain, and 61.5% of the participants who use prostheses experienced phantom limb pain. Phantom pain becomes less common as time passes after amputation [31]. When it came to the QOL, prosthesis users had a considerably higher PCS mean score than non-users. In addition, prosthesis users had a significantly higher MCS score than non-users.

The Depression, Anxiety and Stress Scale -21 Items (DASS-21)
A study discovered a strong association between unsuccessful prosthetic fitting and a number of psychological problems, such as depression [41]. Our study found that 20.5% of participants had severe to extremely severe depression, whereas 42.7% had mild to moderate depression. In this study, 41.8% of respondents reported normal anxiety, 31.8% showed mild to moderate anxiety, and 26.4% revealed severe to extreme anxiety. According to a previous study, 35.5% of participants had significant anxiety [42]. Normal stress was recorded by 62.3% of participants, mild to moderate stress was observed by 26.8%, and severe to extreme stress was reported by 10.9%. The findings revealed that people without prostheses had greater levels of severe depression. whereas those who use prostheses have greater levels of severe anxiety and stress. If we compare based on QOL, it will show that participants with mild to moderate and severe to extremely severe depression have better PCS values than MCS. Also, PCS is higher than MCS in participants with mild to moderate and severe to extremely severe anxiety and stress. Horgan and Maclachlan [1] found in their review of psychological adjustments to amputation that depression and anxiety seem to be relatively high up to two years following amputation, they drop thereafter to levels equivalent to those in the general community. Additionally, there was a substantial difference in the prevalence of depression and anxiety, which peaked after amputation and then decreased throughout inpatient rehabilitation before rising once again after release [21].

Caregivers
According to the findings, more than half of the participants (61.6%) experienced no or minimal burden. The main reason may be because most of the caregivers in our study are below age 35. Only 15.1% of participants had a high burden, while 23.3% had a mild to moderate burden. Regarding the duration of carrying the amputees, our study shows that 37.4% of the caregivers served the amputee for less than one year, 24.7% for one to two years, while 19.6% cared for the amputee for five years or more. Ojoawo et al. [43] studied and analyzed the caregiving load between unofficial carers of people with varying degrees of amputation. They discovered that females had a somewhat higher-than-average but considerably greater score than men. Also, they noticed the caregiver burden was the greatest in cases of above the knee amputations and the smallest in cases of below-knee amputations. In terms of daily hours spent carrying an amputee, 25.6% of carers spent less than one hour, 33.8 percent spent one to two hours, 20.1% spent three or four hours, and 20.5% spent more than four hours. Mainly because most of the caregiver are students and others are working and they have less time to care them, and they are busy with their personal life. Longer care is linked to greater caregiver burden and depression [44]. This study shows that 45.2% of caregivers care the amputees and the primary cause is DM. In this research, 58.9% of the participants had a daily sleep duration of fewer than six hours. According to a different study, 50% of the carers slept for up to six hours per night [45]. In this study, 36.1% of caregivers never play sports, compared to 29.2% who play once per week, 21.9 % who play two to three times, and 12.8% who play every day. This might be linked to the time spent in caregiving, where there are no specific hours of care, therefore it may reduce their free time and their ability to exercise and play sports. Physical activity improves patients' quality of life by having a beneficial impact on their physical ability and caregiver burden [46]. Caregivers who engaged in physical exercise at least once per week had a greater mental QOL with regard to the method of adjustment and adaptation to the disease. As it encourages breaks from the crowded and stressful daily schedules and fosters interaction, physical activity does really benefit the mental health of those who engage in it [47][48][49].
The strength of this study is it's being one of the first studies carried out in Saudi Arabia to assess the psychosocial life and the quality of life in amputees, the psychosocial processes involved in adjusting to amputation and a prosthesis, and the burden of amputees on caregivers. The limitations of this study are that the response rate was not good from the amputees and caregivers. Also, there was a lack of research about amputees and caregivers conducted in Saudi Arabia, and no studies were conducted to evaluate QOL in other causes of amputation because there are few studies about ulcers and amputation that related to diabetic foot.

Conclusions
In clinical practice, it is highly advised that prosthetic limbs be evaluated using TAPES to evaluate how well they are being adjusted to and appreciated. It shows how much the quality of life for those who have had amputations may be enhanced. Our finding shows there are correlations between TAPES and SF-12 PCS and MCS scores. It is advised that psychological assessment and counseling should be a component of the overall care of amputees due to mild to moderate rates of anxiety, depression, and stress among amputees. The findings emphasize the necessity of psychological and social support to be considered in caregivers' health assessments. Also, the physical health of the caregivers should be fundamental in their lives as it minifies the caregiver burden. Further studies should be considered with a larger sample of amputees and longitudinal studies to evaluate the adaptation changes over time, caregiving burden, and family functioning.

Additional Information Disclosures
Human subjects: Consent was obtained or waived by all participants in this study. Institutional Review Board of King Faisal University issued approval KFU-REC-2021-OCT-EA00073. Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue. Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work.