This study shows that prosthetic and orthotic user had lower QOL scores in the physical health, psychological, and environmental domains than did those without disability. There were no significant differences in general QOL or general health between the groups with and without disability. The results also identified the subgroups of persons with disability with the lowest QOL scores that need to be prioritized in health, rehabilitation, and development programmes to achieve equity. These results correspond to the results of a systematic literature review [5] and to a case-control study of leprosy patients in India using WHOQOL-Bref [2], which both found lower QOL scores in people with disability in the physical health and psychological domains than in the control group. The most common cause of disability among the participants was poliomyelitis, which leaves survivors with reduced muscle strength and varying degrees of paralysis requiring knee-ankle-foot orthosis. In 2014, India was certified polio-free, yet many people continue to live with disabilities caused by polio [23]. To the best of our knowledge, only one other study has been published comparing QOL in a group of lower-limb amputees with that in the general population of India [6]. Therefore, the discussion that follows about concerns previous research conducted in other relevant countries.
A study of QOL using WHOQOL-Bref among Nigerians with unilateral lower-limb amputations [24] found a slightly higher overall QOL (i.e., 15.5) than did the present study (14.4). The group wearing prostheses in Nigeria [24] scored higher in the physical health, psychological, and environmental domains than did those with a unilateral lower-limb amputation not wearing prostheses. Women and those who had not yet received assistive devices needed attention, as their scores indicated lower QOL [24]. In a QOL study of lower-limb amputees conducted in Mumbai, India, using the 36-Item Short Form Health Survey (SF-36) [6], the physical and mental scores were significantly lower among amputees than among the general population. One Turkish study [25] comparing patients with post-polio syndrome and a control group without post-polio syndrome reported lower QOL in physical mobility, pain, and energy for post-polio patients [25].
QOL in prosthetic and orthotic users in relation to gender
Our study found no significant differences between women and men with disability. This is in line with a systematic literature review [5], which found that only 3 of the 26 included studies in people with amputations reported significantly lower QOL among women than men.
However, men with disability had significantly lower QOL than men without in the physical health and environmental domains. This corresponds well with a finding regarding male leprosy patients in India [2]. In our study, women with disability had lower QOL than women without in the physical health domain, in contrast to the results of another Indian study [2], in which female leprosy patients’ scores indicated lower QOL than the female reference group’s in the psychological domain. One explanation for this difference could be variations in samples or types of disability. Nigerian women with lower-limb amputations also had lower QOL scores than men with lower-limb amputations in the physical health and social relationship domains [24].
QOL for prosthetic and orthotic users in relation to income, education, and area of residence
Our results indicated that the subgroups that had no or irregular income and had not attended school were associated with a higher risk of lower QOL in all four domains: physical health, psychological, social relationships, and environment. Similar to this result, a Cambodian study [14] of people with disability reported that higher levels of education and higher contributions to household income were linked to higher QOL. Cambodian respondents who never attended school reported lower QOL than did respondents who had attended high school. Respondents in that study who did not contributing to the household income reported lower QOL in most domains [14]. A Thai study [3] obtained similar results when examining the health-related QOL (HRQOL) of people with a unilateral lower-limb amputation. Their results indicated that higher education and employment after an amputation were factors related to good HRQOL. A Bangladesh study investigating participants with ambulatory impairments found that use of assistive technology, such as wheelchairs, was positively associated with reduced poverty [26]. Our results also indicate that the subgroup living in slums had a higher risk of lower QOL in the physical health, psychological, and environment domains.
The Indian study [6] using SF 36 identified factors that affect QOL in lower-limb amputees reported that employment status, use of an assistive device, use of a prosthesis, co-morbidities, phantom limb pain, and residual stump pain significantly predicted both Physical and Mental HRQOL. The systematic review [5] of QOL studies of amputees found that most studies lacked information about background variables, such as education, employment, economic, and marital status. However, an another systematic review [27] found that higher physical activity, years of education, higher phantom pain severity, duration of phantom pain, level of amputation, and back pain were factors influencing HRQOL in American amputees caused in Vietnam and Iraq wars.
Groups vulnerable to low QOL
Our results indicate lower physical health QOL in prosthetic and orthotic users living in urban slums and rural areas than in those without disability living in these areas. This could be because daily life requires more physical activity in the rural areas and urban slums of India than in the non-slum urban areas. However, in general, limitations in physical functioning negatively affect amputees’ QOL [5]. People with disability without education or regular income are a vulnerable group that needs to be considered in CBR programmes [11, 12] and in planning rehabilitation services. The present study also found that people in urban slums with disability, no or irregular income, and no schooling had the lowest scores in all four QOL domains; to achieve equity, these groups also need to be included and prioritized in CBR activities and other development programmes, as well as in health and rehabilitation services.
Limitations and methodological considerations
The present results are based on participants recruited from locations where Mobility India had established CBR programmes in slums and rural areas, which needs to be considered when interpreting the results. We suggest that those with physical disability who are not covered by CBR programmes and have not received services at all might experience an even greater negative QOL. The data were collected in different settings (at the rehabilitation centre, the participants’ homes, or in public) and these different environments may have affected the participants’ responses. However, all participants had similar access to CBR and centralized rehabilitation services at Mobility India; therefore, we think the different settings did not influence the results. Both the English and the Kannada versions of the WHOQOL-Bref were used. Researchers with experience in previous studies did the Kannada language translation [20, 21] in collaboration with the WHOQOL group. There may have been some differences in the way the messages were conveyed, but authors did not identify any problems with the translation during either data collection or data analysis.
The WHOQOL-Bref instrument used here involves the operationalization of the WHO theoretical construct of QOL in defined variables and the application of a survey methodology to quantify these variables. Furthermore, the strength of this instrument is the comprehensive validation performed in many countries [18, 22]. However, in this study, 38% of the participants (105 of a total of 277) did not answer the question “How satisfied are you with your sex life?” and several participants felt uncomfortable answering this question, resulting in low internal consistency (Cronbach’s α = 0.57) in the social relationship domain. This is important to consider when comparing the results for this domain between different age groups, sexes, and cultural contexts. In India, sex education is uncommon; people with disability are often perceived to lack the same desire as others, and they are aware of their inequality [28].
Implications of QOL in relation to CBR programmes
Based on our results, access to education and income need to be prioritized to improve QOL in India for people with and without disability. We recommended that CBR and other development programmes for people with disability prioritize those who have no or irregular income, live in urban slums, and have not attended school. People with disability who have received rehabilitation services still need increased access to education, enough money to meet their basic needs, and information for everyday living to further improve their QOL. Opportunities for leisure activities have the potential to improve QOL in those with and without disability, especially those living in urban slums. In addition, a case study from India [29], a study from Iran [30], and a systematic review [31] all show that CBR interventions are important for vulnerable people with disability.