The present study analysing the employment status of patients suffering from ERSD showed that less than 1/6th of the study population was employed in a prevalent dialysis population. Prior to starting maintenance dialysis, 69% of the study population was employed and loss of employment was up to 78% among those who were previously employed. Initiating dialysis also affected the students as 3/4th of the students enrolled in the present study did not continue their studies after starting dialysis. A quarter of the homemakers (all females) was unable to do household chores after initiating dialysis.
Most of the data on employment status of patients on maintenance dialysis comes from studies performed in Western countries. Studies from North America and Europe have found employment rates from 23–31.2% among patients on maintenance dialysis (Holley and Nespor 1994, van Manen et al. 2001). But the situation may not be the same in the Indian context because in the USA, nearly all ESRD patients are under Medicare coverage and European nations also have a strong social support network (Erickson et al. 2018). Data from India is scarce and we could find only one study which analysed the ESRD patients on maintenance dialysis from South India and found that 33.5% of HD and 26% of PD patients were employed. They postulated that the institute where study was conducted is a part of an organization which runs many temples, orphanages and educational institutes and most of their patients are employees or dependents of that organization, which could have led to a higher employment rate (Lakshmi et al. 2017). We observed a very low employment rate (15.6%) among patients on maintenance dialysis.
Other studies have found that 23–31% patients maintain employment after initiating dialysis, hence the loss of employment is substantial (Curtin et al. 1996, Julius et al. 1989, Rasgon et al 1993, Evans et al. 1985, Rasgon et al. 1996, Antonoff and Mallinger 1990, Buckley et al. 1985, Kutner and Cardenas 1981, Sherwood 1983). Laxmi et al also observed that proportion of ESRD patients employed reduced from 61.1–29.9% after initiating dialysis (Lakshmi et al. 2017). The present study also revealed that 72.7% of students stopped studying and 28.6% of homemakers were unable to do household chores after initiating dialysis. Loss of studies may further hamper the future employability of these individuals. Only 2 patients had a gain in employment after initiating dialysis in the current study. This is similar to the observation made by van Manen et al in Dutch ESRD patients among whom 2% of patients gained employment after initiating dialysis. They postulated that probably dialysis does not promote vocational rehabilitation by itself and we should direct our efforts to prevent loss of jobs among patients who are already employed before initiating dialysis (van Manen et al. 2001).
Regarding factors affecting loss of employment after initiating dialysis, our study found that being on maintenance PD, living in a nuclear family, self-financing of treatment and a professional job predicted employment after initiating dialysis. Prior studies also show contradictory observations regarding factors predicting employment after initiating dialysis. Lee et al also observed that ESRD patients who were employed full time were significantly younger (Lee and Jin 2020).
Comorbidities, performance status, duration of CKD and dialysis vintage are likely to be associated with employment, but their effect has been inconsistent in previous studies (Holley and Nespor 1994, Curtin et al. 1996, Lakshmi et al. 2017, van Manen et al. 2001, Rasgon et al 1993, Helanterä et al. 2012). We did not find any difference in comorbidities, duration of CKD and dialysis vintage among employed and unemployed patients on maintenance dialysis.
Effect of dialysis modality on employment status of patients on maintenance dialysis has never been proven conclusively. Some studies have reported that dialysis modality has no effect on employment (Holley and Nespor 1994, van Manen et al. 2001) whereas others have found that patients on PD are more likely to be employed as compared to those on HD (Julius et al. 1989, Wolcott and Nissenson 1988, Fragola et al 1983, Evans et al 1985, Bremer et al. 1989). We found that patients on PD were significantly more likely to retain employment as compared to those on HD. It has been suggested that treatment modality does not affect change in employment, rather employment status may affect the choice of treatment modality. Patients who are employed when maintenance dialysis therapy is initiated probably tend to choose PD as the treatment modality because it enables ambulatory treatment with flexible working schedules (van Manen et al. 2001).
Dialysis centre characteristics may affect employment in patients undergoing maintenance HD. An inflexible dialysis schedule may act as a barrier to vocational rehabilitation and presence of a late dialysis shift was found to be the strongest predictor of employment in a study performed by (Kutner et al. 2008). But a facility for evening HD was not associated with employment on multiple regression analysis in our study. Distance of the dialysis centre from place of residence may also affect employment as patients need to travel 2 to 3 times a week which may hinder their work. Longer distance from the dialysis centre predicted lesser likelihood of employment in the present study.
Laxmi et al found that illiteracy was a strong predictor of loss of employment after initiating dialysis in ESRD patients. It may be because less educated persons have limited job opportunities, less flexible working hours and have jobs which require more physical labour (Lakshmi et al. 2017). But we did not observe a difference in the proportion of patients with different educational qualifications between those who retained employment as compared to those who did not. Patients living in nuclear families were more likely to retain employment than those living in joint families. The reason underlying this observation may be the fact that patients in joint families may have a stronger social and financial support and may feel a lesser need to earn. Self-finance and dependence on government schemes were found to be predictive of retaining employment and loss of job, respectively. In this part of our country, various government schemes are available to support treatment of patients of lower socioeconomic status. In social support systems where government provides financial assistance to unemployed or chronically ill, low paid employment may not provide more income as compared to social security benefits, and hence it may be a barrier to employment (Helanterä et al. 2012). Well educated patients with a good work history are more likely to continue employment after initiating dialysis (Kutner et al. 1991, Ferrans and Powers 1985, Buckley et al. 1985). In the present study also, self financed subjects had higher educational qualifications, better jobs and belonged to higher socioeconomic status.
Being in a professional job was predictive of employment after initiating dialysis. Laxmi et al also observed that loss of employment after dialysis initiation was significantly affected by predialysis employment level and was significantly higher among patients with blue collar jobs as compared to those with white collar jobs. Many factors have been postulated to account for this difference. Higher category jobs require less physical labour and have flexible working hours which may be adjusted according to dialysis schedule. Whereas people in lower category jobs lack openings to shift to jobs requiring less physical labour, have less flexible working hours and are unable to obtain social support due to their marginalized status (Lakshmi et al. 2017).
Presence of anemia and MBD in patients with CKD may be associated with weakness, fatigue, bone pains leading to poor functional status and difficulty to maintain employment. Our study did not find any difference in haemoglobin, albumin, MBD parameters (calcium, phosphorus, iPTH and alkaline phosphatase) between patients who retained employment and those who lost employment after initiating dialysis.
There are a few limitations of the present study. First, it is a cross sectional study and hence it is difficult to assess the risk of loss of employment as the time on maintenance dialysis increases. Moreover, the relationship of most of the factors with employment has been inconsistent because these factors may be associated with employment longitudinally and most of the previous studies also have been cross sectional studies. Second, we did not assess the attitude of patients towards employment as it may also affect the employment of patients on maintenance dialysis. There are significant differences between the attitudes of employed versus non-employed patients with regard to health-related barriers to employment. Third, it is a single centre study and the study population represents patients visiting a public-sector hospital, hence the results may not be generalized to the general ESRD population.