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Research Article | Volume 18 Issue 9 (September, 2026) | Pages 363 - 367
Meaning in Life among Patients with End-Stage Renal Disease on Maintenance Hemodialysis: An Evaluation Using the SMiLE Questionnaire
 ,
 ,
1
Assistant professor Dept. of General Medicine JGMMMC, KAHER
2
Assistant professor Dept. of General Medicine JSSAHER,
3
Senior Resident General Medicine JGMMMC, KAHER.
Under a Creative Commons license
Open Access
Received
Aug. 1, 2026
Revised
Aug. 15, 2026
Accepted
Sept. 4, 2026
Published
Sept. 21, 2026
Abstract

Introduction: End-stage renal disease (ESRD) is a chronic, life-limiting condition associated with substantial physical, psychological, social, and spiritual burden. Maintenance hemodialysis prolongs survival but imposes restrictions on daily activities, employment, social relationships, independence, and future planning. Consequently, understanding what gives meaning to life may provide an important patient-centered dimension of quality-of-life assessment. The Schedule for Meaning in Life Evaluation (SMiLE) is an individualized instrument developed to evaluate personally meaningful areas of life and their perceived importance and satisfaction. Objective: To evaluate meaning-related quality of life among patients with ESRD receiving maintenance hemodialysis using the SMiLE questionnaire and to assess changes following a multidisciplinary palliative-care intervention. Materials and Methods: This analysis was derived from a controlled clinical trial conducted in the dialysis unit of Yenepoya Medical College Hospital. Sixty-four adults with ESRD who had received maintenance hemodialysis for at least six months were included; 32 were allocated to a palliative-care intervention group and 32 to a control group. The intervention was delivered over four weeks. Quality of life and meaning in life were assessed using the SMiLE questionnaire. The parent study also employed the SF-36 and YEmpathy palliative-care needs questionnaire. Results: Mean baseline SMiLE scores were 69.07±13.16 in the intervention group and 67.60±15.23 in the control group. Following four weeks, scores increased to 72.82±8.13 and 72.28±7.95, respectively. The improvement in the intervention group approached but did not reach statistical significance (p=0.052), while the improvement in controls was also statistically non-significant (p=0.196). Conclusion: Patients undergoing maintenance hemodialysis retained appreciable meaning-related quality of life despite the burden of ESRD. SMiLE scores improved in both study groups, although the changes were not statistically significant. Individualized assessment of meaning in life may nevertheless help identify patient priorities and support person-centered renal and palliative care.

Keywords
INTRODUCTION

Chronic kidney disease (CKD) represents a major public-health problem because of its increasing prevalence, progressive course, high cardiovascular and non-cardiovascular morbidity, mortality, and economic burden. ESRD represents the advanced stage of CKD in which kidney function is inadequate to sustain normal physiological homeostasis without renal replacement therapy. In India, access to renal replacement therapy remains challenging, and the burden of advanced CKD is complicated by socioeconomic barriers and unequal availability of specialist services.[1-3] The source dissertation similarly emphasizes that many patients with advanced CKD encounter substantial barriers to care and that long-term hemodialysis does not eliminate the wider psychosocial and spiritual consequences of ESRD.

 

Maintenance hemodialysis is one of the principal life-sustaining treatments for ESRD. Although dialysis corrects several metabolic consequences of renal failure and prolongs survival, it does not restore patients to their premorbid state. Patients frequently experience fatigue, pain, sleep disturbance, pruritus, reduced physical capacity, dietary and fluid restrictions, dependence on caregivers, loss of employment and financial difficulties. They may also experience anxiety concerning treatment, uncertainty about the future, fear of death, depression, social isolation and loss of autonomy.[4,5] Depression and anxiety are particularly important among patients receiving chronic hemodialysis, while impaired quality of life may adversely affect motivation for treatment and self-care.

 

Quality of life in ESRD therefore extends beyond conventional biomedical outcomes. The experience of chronic illness can alter a person's roles, aspirations, relationships, values and perception of purpose. Meaning in life refers broadly to the extent to which an individual experiences life as significant, coherent, purposeful and worthwhile. For a person undergoing long-term dialysis, sources of meaning such as family, interpersonal relationships, spirituality, leisure, work, personal achievements and future goals may become particularly important.

 

Fegg et al. developed the Schedule for Meaning in Life Evaluation (SMiLE) as an individualized instrument for meaning-in-life research.[6] Unlike fixed-domain quality-of-life instruments, SMiLE allows individuals to identify personally meaningful areas, thereby recognizing that sources of meaning vary considerably between patients. Subsequent work in palliative-care populations demonstrated the potential value of individualized meaning assessment among people facing life-limiting disease.[7] The source dissertation specifically employed SMiLE alongside the SF-36 and a palliative-care symptom assessment tool.

 

In ESRD, this individualized approach is clinically relevant because two patients with similar biochemical parameters or dialysis schedules may experience their lives very differently. Exploring meaning may identify goals and values that conventional symptom scales overlook and may facilitate communication among patients, caregivers, nephrologists and palliative-care teams.

 

MATERIAL AND METHODS

This was a focused analysis of Smile questionnaire data obtained from a controlled clinical trial conducted in the dialysis unit of Yenepoya Medical College Hospital, Mangalore, Karnataka. The parent study investigated the effect of multidisciplinary palliative-care intervention on quality of life among patients with ESRD receiving maintenance hemodialysis. Study population Adult patients with ESRD undergoing maintenance hemodialysis constituted the study population. Participants were eligible if they were aged >18 years, had been receiving maintenance hemodialysis at the study center for at least six months, attended dialysis on working days from Monday through Saturday, and provided informed consent. Patients with dementia, acute kidney injury, or another major life-limiting illness such as malignancy, end-stage liver disease or end-stage respiratory disease were excluded. Sample size and allocation The initially estimated sample size of the parent study was 126 participants, with 63 participants anticipated in each group. However, recruitment was substantially affected by the COVID-19 pandemic, with fewer patients attending the dialysis center and some receiving dialysis closer to their hometowns. Consequently, 64 eligible participants were recruited and divided equally between the two groups. Thirty-two patients attending dialysis on Monday, Wednesday and Friday were assigned to the intervention group, while 32 attending on Tuesday, Thursday and Saturday formed the waitlisted control group. Both groups continued to receive standard nephrology care. Intervention Participants in the intervention arm received multidisciplinary palliative-care input for four weeks. The team included a palliative-care physician, geriatrician, physiotherapist and psychologist. Recommendations were reviewed by the treating nephrologist and implemented as clinically appropriate. Serious symptoms identified during assessment were communicated to the treating physician/nephrologist for appropriate management. Assessment of meaning in life Meaning-related quality of life was evaluated using the Schedule for Meaning in Life Evaluation (SMiLE), originally developed and validated by Fegg et al.[6] The parent study used SMiLE as one of its quality-of-life measures together with SF-36 and YEmpathy. Translated questionnaires were used where required to facilitate patient participation. SMiLE is an individualized approach that permits respondents to consider the areas that personally give meaning to their lives and evaluate these areas according to their perceived importance and satisfaction.[6,7] This makes it particularly suitable for chronic and life-limiting illnesses in which personally meaningful priorities may not correspond fully to standardized health-status domains. Outcome measures The principal outcome for the present analysis was the change in mean SMiLE quality-of-life score from baseline to the end of the four-week study period. Scores were assessed separately within the intervention and control groups and descriptively compared between groups. Statistical analysis Continuous data were summarized using mean and standard deviation, while categorical characteristics were expressed as frequencies and percentages. Within-group changes in SMiLE scores were assessed using paired statistical comparison as reported in the parent study. A p-value <0.05 was regarded as statistically significant. Ethical approval was obtained for the parent study, informed consent was obtained from participants, and privacy was maintained throughout the research process.

RESULT

A total of 64 patients were included, with 32 participants each in the intervention and control groups. The groups were generally comparable with respect to age, sex, serum creatinine, duration of hemodialysis and dialysis frequency.

 

Table 1. Baseline characteristics of the study population

Characteristic

Intervention group (n=32)

Control group (n=32)

p-value

Age, years, mean±SD

48.4±13.3

47.3±13.4

0.692

Male, n (%)

25 (78.1)

22 (68.8)

0.396

Female, n (%)

7 (21.9)

10 (31.3)

0.721*

Serum creatinine, mg/dL

10.3±3.3

10.7±3.5

0.952

Duration on hemodialysis, years

3.58±3.03

3.23±1.95

0.592

Dialysis three times/week, n (%)

19 (59.4)

24 (75.0)

0.183†

Dialysis twice/week, n (%)

13 (40.6)

8 (25.0)

*Reported as presented in the parent dataset; †overall comparison for dialysis frequency. Source data:

The mean age was approximately 48 years in both groups. Male participants predominated. There were no statistically significant differences in age, serum creatinine or duration of hemodialysis, indicating reasonable baseline clinical comparability between the groups.

 

Table 2. SMiLE meaning-related quality-of-life scores before and after the study period

Group

Baseline SMiLE score, mean±SD

Post-study SMiLE score, mean±SD

Mean change

p-value

Intervention (n=32)

69.07±13.16

72.82±8.13

+3.75

0.052

Control (n=32)

67.60±15.23

72.28±7.95

+4.68

0.196

Source data:

At baseline, the mean SMiLE score was slightly higher in the intervention group (69.07) than in the control group (67.60). After four weeks, both groups demonstrated higher scores. The intervention group increased by 3.75 points to 72.82, while the control group increased by 4.68 points to 72.28. The intervention-group improvement approached statistical significance (p=0.052), whereas the control-group change was not significant (p=0.196).

 

Table 3. Direction and statistical significance of change in meaning-related quality of life

Outcome

Intervention group

Control group

Direction of SMiLE change

Improved

Improved

Absolute mean change

+3.75

+4.68

Post-study mean score

72.82

72.28

Within-group statistical significance

Not significant

Not significant

Overall interpretation

Trend toward improvement

Trend toward improvement

The principal finding was therefore an improvement in SMiLE scores in both groups without statistically significant within-group change. The parent study similarly concluded that SMiLE scores improved in both groups but did not reach statistical significance.

DISCUSSION

The present analysis explored meaning-related quality of life among patients with ESRD undergoing maintenance hemodialysis using the SMiLE questionnaire. The major finding was that mean SMiLE scores improved during the four-week observation period in both the intervention and control groups. The intervention group's mean score increased from 69.07±13.16 to 72.82±8.13, with a p-value of 0.052. Although this narrowly missed the conventional threshold for statistical significance, the direction of change suggests a possible improvement in perceived meaning-related quality of life. Meaning in life is particularly relevant to patients undergoing dialysis because ESRD creates challenges extending beyond physical symptoms. Dialysis patients may experience loss of independence, employment and time, together with uncertainty about their future and fear of mortality. Psychological disorders such as depression and anxiety can further compromise quality of life.[4,5] These psychosocial consequences are described in the source dissertation, which notes that loss of health, time, employment and independence may contribute to uncertainty and psychological distress. SMiLE differs conceptually from conventional health-related quality-of-life instruments because it is individualized. Fegg et al. developed and validated SMiLE to permit respondents to nominate personally meaningful life areas and evaluate their importance and satisfaction.[6] Fegg et al. subsequently demonstrated its application in palliative-care populations, supporting the relevance of individualized meaning assessment in patients facing serious illness.[7] This approach may be particularly useful in nephrology because conventional physiological variables such as serum creatinine or dialysis frequency provide little information about what makes a patient's life personally worthwhile. Interestingly, improvement was also observed in the control group, whose mean score increased from 67.60±15.23 to 72.28±7.95. The parent study suggested several possible explanations. Severe symptoms identified in controls were communicated to the nephrology team, potentially resulting in therapeutic attention. Caregiver involvement during questionnaire administration may also have increased awareness of patients' social, spiritual and personal needs. Most importantly, completing the SMiLE questionnaire itself may have encouraged patients and caregivers to identify a “wish list” or meaningful goals that could be pursued despite the limitations imposed by dialysis. This finding highlights a clinically interesting possibility: structured questioning about meaning may itself facilitate reflection and communication. It should not, however, be interpreted as proof of a therapeutic effect of questionnaire administration because the study was not designed to establish such an effect. The findings should also be interpreted in light of the limited sample size. The original sample-size calculation anticipated substantially more participants, but recruitment was reduced during the COVID-19 pandemic. With only 32 participants per group, the study may have lacked adequate statistical power to detect modest changes in SMiLE scores. The intervention-group p-value of 0.052 particularly supports the need for adequately powered studies before drawing conclusions regarding intervention effectiveness. Nevertheless, SMiLE appears useful as a complementary patient-centered instrument. Rather than replacing symptom or conventional quality-of-life assessment, it can broaden clinical understanding by identifying the individual relationships, activities, aspirations and values that patients regard as meaningful. Integrating such assessment into renal supportive and palliative care may help clinicians move from disease-centered treatment toward goal-concordant, person-centered care.

CONCLUSION

Patients with ESRD receiving maintenance hemodialysis demonstrated measurable and potentially modifiable meaning-related quality of life. Mean SMiLE scores increased from 69.07 to 72.82 in the palliative-care intervention group and from 67.60 to 72.28 in the control group, although neither change reached statistical significance. The findings indicate that assessment of meaning in life can provide information beyond conventional clinical and health-related quality-of-life measures. The SMiLE questionnaire may help patients identify personally meaningful priorities and may assist clinicians and caregivers in developing individualized supportive-care goals. The source study itself concluded that SMiLE helped bring out patients' wishes and potentially supported finding meaning within the limitations imposed by dialysis.

REFERENCES
1. Varma PP. Prevalence of chronic kidney disease in India-where are we heading? Indian J Nephrol. 2015;25(3):133-5. 2. Jha V. Current status of end-stage renal disease care in India and Pakistan. Kidney Int Suppl. 2013;3(2):157-60. 3. Jha V, Ur-Rashid H, Agarwal SK, Akhtar SF, Kafle RK, Sheriff R. The state of nephrology in South Asia. Kidney Int. 2019;95(1):31-7. 4. Kimmel PL, Peterson RA. Depression in end-stage renal disease patients treated with hemodialysis: tools, correlates, outcomes, and needs. Semin Dial. 2005;18(2):91-7. 5. Cukor D, Cohen SD, Peterson RA, Kimmel PL. Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness. J Am Soc Nephrol. 2007;18(12):3042-55. 6. Fegg MJ, Kramer M, L'Hoste S, Borasio GD. The Schedule for Meaning in Life Evaluation (SMiLE): validation of a new instrument for meaning-in-life research. J Pain Symptom Manage. 2008;35(4):356-64. 7. Fegg MJ, Brandstätter M, Kramer M, Kögler M, Haarmann-Doetkotte S, Borasio GD. Meaning in life in palliative care patients. J Pain Symptom Manage. 2010;40(4):502-9. 8. Yong DS, Kwok AO, Wong DM, Suen MH, Chen WT, Tse DM. Symptom burden and quality of life in end-stage renal disease: a study of 179 patients on dialysis and palliative care. Palliat Med. 2009;23(2):111-9. 9. Abraham S, Venu A, Ramachandran A, Chandran PM, Raman S. Assessment of quality of life in patients on hemodialysis and the impact of counseling. Saudi J Kidney Dis Transpl. 2012;23(5):953-8. 10. Santos PR, Júnior JRFGC, Cavalcanti JU, Vieira CB, Rocha ARM, Apolônio NAM, et al. Quality of life among women with sexual dysfunction undergoing hemodialysis: a cross-sectional observational study. Health Qual Life Outcomes. 2012;10:103. 11. Santos PR, Júnior JRFGC, Cavalcante Filho JRM, Ferreira TP, dos Santos Filho JNG, Oliveira SS. Religious coping methods predict depression and quality of life among end-stage renal disease patients undergoing hemodialysis: a cross-sectional study. BMC Nephrol. 2017;18:197. 12. Reindl-Schwaighofer R, Kainz A, Kammer M, Dumfarth A, Oberbauer R. Survival analysis of conservative vs dialysis treatment of elderly patients with CKD stage 5. PLoS One. 2017;12(7):e0181345. 13. Cohen DE, Lee A, Sibbel S, Benner D, Brunelli SM, Tentori F. Use of the KDQOL-36 for assessment of health-related quality of life among dialysis patients in the United States. BMC Nephrol. 2019;20(1):112. 14. Saini S, Arora D. Chronic kidney disease and role of palliative care. Hosp Palliat Med Int J. 2018;2(6):358-60. 15. Humera K, Ali S, Bhat S, Adhikari P. Care giver burden among the caregivers of older adults with palliative care needs. J Indian Acad Geriatr. 2020;16:63-7.
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