| Abstract|| |
Live-related renal transplantation in India by “caregiver donors” provides huge financial, emotional, and physical support. Their psychological and mental health has not been addressed. We performed a prospective study using the World Health Organization Quality of Life (WHOQoL) BREF Scores and the Hospital Anxiety and Depression Scales preoperatively, at two weeks and three months after transplant. We included 30 pairs; most donors were females (80%, 60% mothers, 28% wives). The mean age of donors was 43.77 ± 10.64 years (34.8 ± 9.01 for recipients). There was improvement in the WHOQoL BREF after two weeks and three months as follows: physical domain (74.30 ± 9.74 vs. 78.30 ± 8.20; P = 0.001), and (74.30 ± 9.74 vs. 86.23 ± 7.25; P <0.001); psychological (74.90 ± 8.44 vs. 82.07 ± 7.19; P <0.001) and (74.90 ± 8.44 vs. 88.07 ± 6.89; P <0.001); environmental (75.33 ± 8.09 vs. 79.57 ± 6.18; P <0.001), and, (75.33 ± 8.09 vs. 86.97 ± 3.8; P <0.001); social-relationships (77.73 ± 8.28 vs. 79.77 ± 7.99; P <0.001), and (77.73 ± 8.28 vs. 84.77 ± 7.45; P <0.001). The recipient scores were similar. Factors with significant Pearson’s or standardized beta co-efficient were donor age <20 years, donor complications, donor anxiety, education (<12th standard), recipient hospital stay (>3 weeks), and, recipient complications (increased creatinine, hemodialysis, lymphocele, and graft dysfunction). The median anxiety scores of donors increased significantly two weeks after operation but later became normal. Caregiver donors have improved QoL scores, despite kidney donation; a larger study is needed.
|How to cite this article:|
Agarwal N, Kumar S, Singh Rana AK, Dokania MK. Can renal transplant improve the quality of life of caregiver donors? A prospective study from India. Saudi J Kidney Dis Transpl 2021;32:510-21
|How to cite this URL:|
Agarwal N, Kumar S, Singh Rana AK, Dokania MK. Can renal transplant improve the quality of life of caregiver donors? A prospective study from India. Saudi J Kidney Dis Transpl [serial online] 2021 [cited 2022 May 22];32:510-21. Available from: https://www.sjkdt.org/text.asp?2021/32/2/510/335464
| Introduction|| |
Chronic kidney disease (CKD) is a major cause of mortality and morbidity in the modern world and India is in the midst of an epidemic of CKD. A disproportionately high prevalence of diabetes mellitus and hypertension (HTN) is seen in the Indian population. It is well-known that transplantation is the best form of renal replacement therapy for end-stage renal disease (ESRD) in terms of quality of life (QoL) and longevity. The annual requirement for renal transplants in India is over 200,000, of which only about 7000 are performed, and mortality is high on the waiting list.
Another problem specific to the Indian context is the poor ratio of deceased donor to live donor renal transplants (<1:10). Although the absolute numbers of living donor transplants in India every year (>6000) rival those of leading countries like the USA, deceased donation lags behind. A combination of socio-cultural and religious factors, compounded by poor infrastructure and personnel, may be responsible. Living donation is mainly by blood relatives (parents, grandparents, and siblings) or spousal, due to cultural practices such as close family bonds and joint families. This kind of donation is also strongly encouraged by the The Transplantation of Human Organs Act, 1994, and its modifications, probably to check organ trade.
Living-related renal transplantation [(LRRT) including spousal donors] provides great financial, emotional, and physical support to ESRD patients. Family donors in India are essentially “caregiver donors,” namely they are associated with the intimate care and treatment of the CKD patient right from the time of diagnosis and beyond. An informal caregiver may be a close friend or family member (including partner or spouse) who takes care of a dependent person. In the context of CKD, caregiver responsibilities include dialysis support (cost, transport of the recipient periodically for dialysis, or, performance of dialysis at home), providing drugs and nutrition, nursing care and medical appointments. They hence function as nonprofessional health-care providers. When caregivers become donors, an additional issue arises namely of their own long-term health and well-being. Although unilateral nephrectomy is safe for the donor in terms of glomerular filtration rate, HTN and heart disease,, the psychosocial and QoL issues are less clear.,, Many authors feel that long-term psychological and mental health outcomes in living donors may be consequent to preoperative and postoperative variables such as preexisting anxiety or recipient complications; these need to be studied in greater detail. Unfortunately, literature is scarce in this regard. Support interventions may improve caregivers’ QoL and mental health, thereby improving medical and psychosocial outcomes for the recipient.
In our unit of a tertiary care hospital, about 50 transplants are performed each year, mostly LRRT. Being a government hospital, there are no costs on inpatient treatment; however, the life-long immunosuppression can prove prohibitive, affecting compliance and financial health of the whole family, including the caregiver donor. It was our hypothesis that a successful transplant may improve the QoL of not only the recipient, but also the caregiver donor affected intimately by the unique situation. Since there are presently no studies from India, we planned a prospective questionnaire-based study to study the impact of renal transplantation on the QoL of care-giver donors.
| Material and Methods|| |
This prospective analytical study was conducted in the renal transplant unit of our tertiary care hospital in North India, over an 18-month period; the departments of nephrology, surgery, and anesthesia were involved. The study was performed after taking due written informed consent from the participants, and clearance from the Institutional Ethics Committee, as per the declaration of Helsinki guidelines. The evaluation started preoperatively in the transplant clinic, where live donors underwent a routine hematological and biochemical checkup along with blood grouping, human leukocyte antigen (HLA) typing, cross-match for B- and T-lymphocytes, and screening for viral illnesses (human immunodeficiency virus, hepatitis B surface antigen, hepatitis C virus, and cytomegalovirus) and common malignancies (breast, prostate, lung, cervix, etc.). Comorbidities such as HTN, diabetes, coronary artery disease, and hyperthyroidism were also ruled out or optimized as per the guidelines. Computed tomography angiography of the renal vessels and DTPA acid scan were used for kidney vasculature and function. The recipient underwent evaluation for fitness for the procedure and compatibility with the donor. Duplex imaging was used to assess the site of anastomoses. Deceased donor renal transplant pairs and donors who were not caregivers were excluded from the study. After establishing the donor to be a caregiver for at least six months, the questionnaire [World Health Organization Quality of Life (WHOQoL) BREF Hindi] was administered two weeks before the transplant operation, after taking due informed consent and enrolling the donor-recipient pair for the study. The Hospital Anxiety and Depression Scales (HADS) questionnaire was also administered simultaneously; the interviewer was the resident doctor, guided by the senior consultant in the unit. The WHOQoL BREF Hindi was obtained from the WHO site after due permission, while the HADS is open for use. The WHOQoL BREF Hindi has 26 items in four domains, namely physical, psychological, social-relationships, and environmental. The scores are finally equated with the WHOQoL 100 for better reproducibility.
The renal transplant procedure was performed by a standard technique; open donor nephrectomy was performed for all cases. The graft kidney was anastomosed into the recipient in an extraperitoneal location (mostly right) using vascular and ureteric anastomoses. All operative details and complications were recorded. In the postoperative phase, the WHOQoLBREF was administered to the donor and recipient after two weeks, i.e., after adequate recovery. The last interview was three months after the operation. Other details of the recovery and postoperative course were recorded, especially with regard to graft function, complications, immunosuppressive drugs, and hospital stay.
| Statistical Analysis|| |
Data were analyzed using IBM SPSS Statistics version 25 Windows (IBM Corp., Armonk, NY, USA). Descriptive statistics were used for documenting clinical and demographic characteristics. Data from WHOQoL BREF Hindi and HADS were averaged using mean and median, respectively. For the comparison of scores at various time intervals, paired t-test was used for WHOQoL scores and Wilcoxon signed-rank sum test for HADS scores. The factors affecting these scores were assessed with univariate analysis using correlation (Pearson correlation coefficient “r” between -1.00 and +1.00) and linear regression (standardized beta coefficient “β”) keeping confidence intervals at 95% and significant P value <0.05.
The primary outcome measure was to study changes in the QoL of caregiver donors after renal transplant, in terms of the scores mentioned above. Other outcome measures were to study the factors (demographic and clinical) affecting these scores.
| Results|| |
Over a period of 16 months, i.e., October 2017 to February 2019, we performed a total of 47 live donor renal transplants. Of these, 36 pairs were recognized where the donor was a caregiver to the recipient for more than six months. Of the other 11 pairs, 10 were related to each other but the donor was not involved in direct care, hence were not considered for the study. Out of 36 selected caregiver donor pairs, 30 were finally included in the study (2 recipients deaths while waiting, 2 declared unfit for surgery, while 2 were lost to follow-up). [Table 1] represents the brief demographic and clinical profile of the patients.
Out of 25 female kidney donors, 15 (60%) donors were mothers, seven (28%) donors were wife, one each were daughter, sister, and, wife’s aunt. In male kidney donors, two were brothers, one each were son, father, husband. All the caregiver donors provided financial, emotional and physical support to the recipient for at least six months, and were involved in regular aspects of care. Out of the 30 total donors, 22 (73%) were genetically related to their recipients, while eight (27%) were genetically unrelated. Out of eight, genetically unrelated donors, one (13%) was HLA mismatch of 5/6. Most other pairs had mismatch of 3/6 or less. There was no mortality in either donors or recipients; four (13.3%) recipients had delayed graft function and required an average three hemodialysis (HD)/ultrafiltration sessions before discharge. Five patients (16.7%) needed graft biopsy, and rejection was detected and treated in three of these. Thirteen (43%) donors had educational qualifications less than secondary school, while 10 (33%) had graduate degrees.
WHOQoL BREF scores
All donors showed significant improvements in the QoL postdonation at two week and three months ([Table 2], [Figure 1]: upper). Recipients also showed similar changes in the QoL profile. ([Table 2], [Figure 1]: lower). The factors affecting the change in donor QoL scores are depicted in [Table 3]. The donor factors which had a significant Pearson’s or standardized beta coefficient in at least one QoL domain were donor age <20 years, donor complications (chest tube for –5 days), and pre-operative donor anxiety and education (<12th standard). The analogous recipient factors were recipient hospital stay (>3 weeks) and recipient complications such as increased serum creatinine, HD, lymphocele, and, delayed graft function.
|Figure 1: Change in World Health Organization Quality of Life scores of donor (above) and recipient (below).|
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|Table 3: Factors affecting donor World Health Organization Quality of Life BREF scores (preoperative to 3 months postoperative) in all 4 domains.|
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Anxiety and depression scores
As shown in [Figure 2], none of the donors had any preexisting mental health issues (anxiety or depression). The median anxiety scores of donors increased significantly in the postoperative period (2 weeks), but came back to preoperative levels at three months. As shown in [Table 4], no factor was significantly associated with anxiety in donors with either Pearson’s or standardized beta co-efficient. For depression, there were significantly higher standardized beta co-efficient values for increased donor hospital stay, and, recipient HD.
|Figure 2: Change in donor anxiety and depression scores.|
HADS: Hospital Anxiety and Depression Scales.
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|Table 4: Predictors of donor anxiety and depression scores at three months postoperatively (Hospital Anxiety and Depression Scale).|
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| Discussion|| |
More than 95% of the renal transplants in India are live-related, with many donors also serving as caregivers (vide supra). [Table 5] summarizes the few studies from India pertaining to donors’ QoL; it is evident that the donors are usually in their 40s, female, and, caregivers (wives and mothers). Indian authors have used WHOQoL frequently, probably due to ease of vernacular availability. The QoL shows improvement in all domains; wherever studied, there was no significantly reported increase in anxiety and depression after transplant. The QoL is not influenced by type of surgery (minimally invasive or otherwise) or education levels; however, recipient complications such as delayed graft function, graft loss, or death, lead to a lower QoL and anxiety in a caregiver donor. Most donors would be willing to donate again, if possible. (10–13) Joshi et al, also report better postdonation QoL scores in donors and recipients, however, they did not specify the relationships. Shrestha et al assessed the QoL pre- and postdonation using Medical Outcome Survey Short Form-36 (SF-36) in 38 control group donors who did not proceed with donation versus 44 actual donors. In the latter group, the postdonation scores were significantly lower due to musculoskeletal pain, migraine, myocardial infarction, diabetes, and peptic ulcers. The opt-out design of this study allows a more objective comparison as care-givers may conceal a few QoL depreciations.
|Table 5: Studies from India pertaining to donor health-related quality of life.|
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Among other low-resource settings, Padrao et al analyzed 69 living kidney donors with WHOQoL BREF and SF-36 questionnaires, and compared them with 68 nondonor participants from the same community. The mean age of donors was 44 years with female preponderance (68%); the patients were from lower socioeconomic classes and donors were mostly related (mothers - 47% and fathers - 16%, siblings 22%). The QoL scores as compared to the control group were similar in six of the eight SF-36 domains, and better in “vitality,” “emotional role,” and three of the four WHOQoL BREF domains. Following graft loss; however, the advantages narrowed and “mental health domain scores worsened. The authors’ demonstration of women’s role in families mirrors that of our setting. They explain that the better QoL scores after donation in lower income groups can be ascribed to high self-esteem and positive reinforcement, a fact underscored in many other studies.,, On the other end of the spectrum is Iran, where paid donation is legal and more than 90% donation is unrelated. Zargooshi reported lower QoL scores in Iranian kidney vendors in all SF-36 domains. After selling organs, donors also reported the high rates of depression and anxiety.
Social and geographical settings may influence QoL scores in donors. Wirken et al conducted a systematic review of 34 similar studies with 3201 living donors. While the median donor age and gender of donors, and follow-up, was similar (47.4 years with 60% females, 6–12 months), SF-36 was the most common questionnaire.,, More than 60% authors use laparoscopic donor nephrectomy for superior outcomes in pain scores and hospital stay; however, our laparoscopic experience was still evolving. In the early postoperative period, HRQOL reduces mainly in physical functioning due to effects of surgery and associated morbidity. In the long-term, donors still had some reduced physical and psychological functioning, but levels were comparable to the general population. Our donors showed a consistent and highly significant improvement in all domain scores up to three months postdonation, apparently discounting the postoperative pain and morbidity. This is probably because of the low preoperative QoL scores in caregiver donors facing emotional and financial distress, followed by the relief afforded by the successful transplant operation. Baek et al seem to justify this assumption in studying 79 children of CKD with their parents as caregivers; they found that QoL scores (Family Impact Module) were lower for HD, than peritoneal dialysis or transplant patients. Mother’s age, duration since diagnosis and comorbidity were the affecting factors. Garcia et al also report the positive influence on closely related donors and caregivers.
Our anxiety and depression scores were less linear, and showed an early worsening (especially anxiety) with return to baseline at three months. Many authors have linked residual or long-term mental ill-health in donors to pre-existing mental health issues,,, and have advocated stringent screening to optimize donor outcomes. No donor had anxiety or depression before donation in our study. Earlier studies were retrospective, with varying definitions of mental health. Recently, many prospective studies show longer recovery times, recipient complications, preexisting depression, and expectations are factors affecting the postdonation QoL.,, Prolonged hospital stay (>2 weeks) and recurrent HD were predictive significantly for depression in our donors. There is also a considerable similarity with our study in factors associated with QoL, like predonation body mass index, nephrectomy side, hand port use, surgery duration, hospital stay, psychiatric history, recipient complications, female sex, smoking, recipient graft failure and donor-recipient relationship, among others.,, Wirken et al opined that donor complications, donor-recipient relationship type, cultural differences in screening, more lenient eligibility in donor selection, recipient and graft survival, and pre-transplant health status of recipient, should be better studied. We attempted to address some of these issues.
Patient-reported outcome measures (PROMs) for assessing HRQOL in CKD patients are varied in literature, making it important to ensure validity and consistency. In a systematic review, Aiyegbusi et al in 2017 found 25 PROMs from 66 publications; they evaluated these for internal consistency, retest reliability, measurement error, content validity, construct validity, structural validity, criterion validity and cross-cultural validity. They suggested using Kidney Disease Quality of Life (KDQOL-36) in pre-dialysis patients, the KDQOL-SF or KDQOL-36 for dialysis patients, and, the ESRD Symptom Checklist- Transplantation Module (ESRD SCL-TM) for transplant patients. Donors who represent healthy subjects can be evaluated with the WHOQoL 100, WHOQoL BREF, the Short Form-36 (SF-36), Symptom Checklist-90 (SCL-90), Social Support Questionnaire (SSQ), and HADS. The WHO-Qol BREF and the SF- 36 are the most reproducible and have been frequently utilized for similar donor-based studies.,, As mentioned earlier, local translation is an added advantage of WHOQoL BREF.
Our study was limited by a small sample size and a short follow-up; however, it can serve as a pilot study for further data. Larger studies could also validate Hindi WHOQoL BREF questionnaires. Using laparoscopic donor nephrectomy is standard of care now, and would offer more accurate scores.
Conflict of interest: None declared.
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Department of Surgery and Renal Transplant, Atal Bihari Vajpayee Institute of Medical Sciences and Dr. Ram Manohar Lohia Hospital, New Delhi – 110001
Source of Support: None, Conflict of Interest: None
[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]