Indian Journal of Public Health

ORIGINAL ARTICLE
Year
: 2014  |  Volume : 58  |  Issue : 3  |  Page : 168--173

Assessment of quality of life during treatment of pediatric oncology patients


Prerna Batra1, Birendra Kumar2, Sunil Gomber3, MS Bhatia4,  
1 Associate Professor, Department of Pediatrics, University College of Medical Sciences and Guru Tegh Bahadur Hospital, New Delhi, India
2 Professor, Department of Pediatrics, University College of Medical Sciences and Guru Tegh Bahadur Hospital, New Delhi, India
3 Senior Resident, Department of Pediatrics, University College of Medical Sciences and Guru Tegh Bahadur Hospital, New Delhi, India
4 Professor, Department of Psychiatry, University College of Medical Sciences and Guru Tegh Bahadur Hospital, New Delhi, India

Correspondence Address:
Dr. Prerna Batra
Associate Professor, Department of Pediatrics, University College of Medical Sciences and Guru Tegh Bahadur Hospital, Dilshad Garden, New Delhi - 110 095
India

Abstract

Background: The objective of this study was to assess health-related quality of life (HRQOL) of pediatric cancer patients and their parents in North India. Materials and Methods: Seventy-five cancer children were assessed for HRQOL, using Lansky play performance scale and health utility index-2 (HUI-2). Fifty-seven patients were followed-up after 4 months after therapy and reassessed. Their parents were also assessed using World Health Organisation (WHO) QOL BREF. Seventy five controls were also assessed and compared. Results: Lansky and HUI-2 scores of patients, as well as WHO QOL BREF of parents were significantly poor in cancer patients when compared to controls. There was significant improvement after therapy in patients with lymphomas and miscellaneous tumors. Pain and self-care were found to be maximally affected domains on HUI-2. Conclusions: Large prospective multicenter studies may be undertaken and hence that need based interventions can be planned.



How to cite this article:
Batra P, Kumar B, Gomber S, Bhatia M S. Assessment of quality of life during treatment of pediatric oncology patients.Indian J Public Health 2014;58:168-173


How to cite this URL:
Batra P, Kumar B, Gomber S, Bhatia M S. Assessment of quality of life during treatment of pediatric oncology patients. Indian J Public Health [serial online] 2014 [cited 2020 Jun 5 ];58:168-173
Available from: http://www.ijph.in/text.asp?2014/58/3/168/138623


Full Text

 Introduction



Cancer is one the major cause of death in Indian children, next only to infection and malnutrition. [1] Worldwide, the annual number of new cases of childhood cancer exceeds 200,000 and more than 80% of these are from developing world. [2] Treatment advances over last few decades have markedly increased the prospects of surviving childhood cancer. [3] Surviving the disease itself does not put an end to the stresses faced by these children and their families. Intensive treatment regimens put these patients at increased risk of poor health related quality of life (HRQOL). World Health Organization (WHO) defines health as "the state of complete physical, mental, and social well-being, not merely the absence of disease or infirmity". [4] The importance of this definition in survivors of childhood cancer is inclusion of both emotional and social dimension of health in addition to physical health.

Cancer and its treatment predispose the childhood cancer survivor to late morbidities, which include cognitive impairment, infertility, alterations in growth and development, organ damage and secondary malignancies. [5],[6] Treatment related complications such as neuro-cognitive dysfunction, cardiopulmonary toxicity, and endocrinopathies may further affect the functioning of the survivors of the childhood cancer. Despite this fact, the current aggressive treatment strategies evoke concerns for QOL for those undergoing treatment for cancer. Adverse consequences on parent's or the caregiver's immediate physical and mental health are also observed. Increased incidence of depression and anxiety has been reported in various studies, which decrease with time to diagnosis and therapy. [7],[8],[9],[10] Various scales have been designed and used to assess HRQOL in children and all of them have found to have a negative impact on QOL. [11],[12],[13],[14] This knowledge may be further utilized to help these patients and families with psychological interventions and support.

Limited studies from developing world, even lesser from India, have been reported where various domains of QOL in children with cancer are assessed. A study by Chirivella et al. of South India used health utility index (HUI) to assess QOL in 45 cancer children, mostly acute lymphoblastic leukemia, using physician proxy assessment. [15] As comprehensive care in the form of support to the family is lacking in Indian practice, we conducted this study with the objective to assess the QOL of children suffering from various malignancies at diagnosis and 4 months after initiation of therapy, and to study the effect of type of cancer and type of therapy they have been receiving, so that need based interventions may be planned.

 Materials and Methods



Study setting

The present observational study was conducted in oncology unit of a Tertiary Care Teaching Hospital of India.

Method

Seventy-five children aged 1-12 years, consecutively admitted in oncology unit with diagnoses of various malignancies were enrolled. The parents or guardians of these patients were interviewed for assessing HRQOL of the child by using Lansky play performance scale, and HUI-2. [14],[16],[17] QOL of their parents was also assessed at diagnosis using WHO-QOL BREF. [18] The patients were subjected to the appropriate therapeutic regimen, as decided by the treating oncology team, and HR QOL of both the patients and parents were reassessed after 4 months of therapy, using the same scales.

Seventy-five age and sex matched controls were selected from the patients attending pediatric out-patient department for immunization or some minor ailment like upper respiratory tract infections. QOL of the controls and their parents were assessed using same Lansky play performance scale, HUI-2 and WHO-QOL BREF scales. Before the study, clearance from Institute Ethical Committee and written informed consent from the parents/guardians, of both cases and controls was taken.

Lansky play performance scale

It is a parent-rated instrument, devised in 1987, which records usual play activity as the index of performance. The scale can be used for children aged 1-16 years, both inpatients and out-patients. It has 11 components, ranging from 0 to 100, 0 being lowest and 100 being highest. Lansky et al. obtained performance status ratings on three groups of children in their study, namely, patients (n = 98), patients' siblings (n = 29), and an independent sample of hospital employees' children (n = 40). Children with all types and stages of childhood malignant neoplasm were represented. Test results established parent as a competent, reliable rater and demonstrated validity of the scale too. Inter-rater reliability was examined using co-relational statistics and percentage agreement. Agreement between parents was good, and there were no systematic rater biases. [16] Thus, Lansky scale provides a quantifiable, reproducible and meaningful data, which is necessary for effective monitoring and management of child with cancer.

Health utility index-123

Health utility index-2 by Feenyetal is a multi-attribute health status classification system. It comprises of seven attributes namely, sensation, mobility, emotion, cognition, self-care, pain and fertility, each having 3-5 levels. Higher the single attribute score, poorer is the QOL. This describes comprehensive health status of the child. The scale has been used for its reliability, validity, responsiveness, acceptability, and usefulness. [14] We did not assess "fertility" in our patients, as the age group was till 12 years. The advantage of HUI-2 over Lansky scale is that the areas maximally or minimally affected can be identified, and interventions can be planned preferentially.

World Health Organization-quality of life BREF

This is an internationally acceptable QOL assessment tool. The instrument has two parts, comprising of 26 items, assessing health in four domains, namely, physical health, psychological health, social relationships, and environment. The score may be self-administered, if the respondent has the ability, or may be interviewer assisted. The instrument was tried cross-culturally in 15 countries, including India, and is a valid tool.

Sample size

Sample size was calculated according to study by Yaris et al. [12] Lansky play performance scale was used to calculate sample size, where mean ± standard deviation (SD) at diagnosis was 59 ± 23 and after 3 months of therapy was 68 ± 18. Assuming SD of score as 20, clinically important deviation as ±10, power as 80% and α error as 5%, sample size was calculated to be 32. Keeping a possibility of high loss to follow-up in these patients, we enrolled 75 cases in our study. Seventy-five controls were also enrolled.

Statistical analysis

Mean of Lansky scores, HUI-2 scores of the patients, and WHO QOL BREF scores of parents were calculated at diagnosis and follow-up, and were compared with the mean scores of controls. The mean Lansky scores of patients at diagnosis and follow-up were compared using paired t-test. Level of significance was taken as <0.05. Mean HUI-2 scores were compared using Wilcoxon signed rank test. As multiple comparisons were being made due to six attributes to be compared, level of significance was taken as <0.01 after Bonferroni adjustment. Mean WHO-QOL BREF scores of parents at diagnosis and follow-up were also compared using paired t-test.

 Results



In the present study, 75 patients presenting with various malignancies were enrolled at diagnosis. Of these, nine patients expired; another nine were lost to follow-up as seven out of nine left against medical advice and two were referred to other centers during therapy. Fifty-seven patients were reassessed for QOL 4 months after therapy, and were analyzed.

Of 75 patients enrolled, 62 (83%) were males. Mean age of presentation was 6.37 (0.3-12 years) in cases and 7.03 (4-12 years) in controls. Majority of the cases (83%) and 68% of controls belonged to Stage 3 of Kuppuswamy scale. Seven patients of solid tumors included cases of neuroblastoma (n = 2), Wilms tumor (n = 2), rhabdomyosarcoma (n = 1), and bone tumor (n = 2) and miscellaneous tumors included two cases each of nasopharyngeal carcinoma and retinoblastoma. Fifty-seven patients completed 4 months of follow-up after initiation of therapy. Sixteen (28%) received chemotherapy alone, 23 (40.5%) combination of chemotherapy and radiotherapy, 8 (14%) combination of chemotherapy and surgery, and 10 (17.5%) chemotherapy, surgery, and radiotherapy.

Lansky score

Mean ± SD of Lansky scores of the patients at diagnosis was 45.09 ± 8.88, and after 4 months of therapy was 51.93 ± 20.22. These scores were significantly less than those of controls (mean value 96.6; P < 0.001). Mean Lansky scores were also compared in relation to the diagnosis. The mean Lansky scores showed significant improvement after 4 months of therapy in patients with lymphomas and miscellaneous tumors when compared to leukemia, central nervous system (CNS) tumors and solid tumors as shown in [Table 1].{Table 1}

Lansky score of these patients were also compared in relation to the type of therapy, and it was observed that the patients who received only chemotherapy (P = 0.014) and combination of chemotherapy and surgery (P = 0.048) had better scores after 4 months of therapy, as compared to those receiving combination of chemotherapy and radiation (P = 0.633), and chemotherapy, radiation and surgery (P = 0.611).

Health utility index-2 scores

Mean single attribute HUI-2 scores of patients were compared, according to the type of cancer at diagnosis and after 4 months of therapy [Table 2]. Pain showed significant improvement in leukemia (P = 0.004), lymphomas (P = 0.004), and miscellaneous tumors (P = 0.006), as compared to that in CNS tumors (P = 0.65) and solid tumors (P = 0.08). Mean scores were also compared in these patients in relation to type of therapy. Statistically significant improvement in pain was seen in patients receiving chemotherapy alone (P = 0.006), and combination of chemotherapy and surgery (P = 0.01), as compared to those who were treated with combination of chemotherapy and radiation or a combination of all the three modalities [Table 3]. Mean HUI-2 score of controls was 1.0.{Table 2}{Table 3}

World Health Organization-quality of life BREF

World Health Organization QOL BREF of the parents was also compared at diagnosis and after 4 months after therapy. The mean ± SD of these scores at diagnosis was 51.39 ± 6.68, at follow-up was 55.59 ± 11.09 and of controls was 74.23 ± 15.8. When these scores were compared in relation to type of cancer, the scores were found to be significantly better in patients with lymphoma (P = 0.019) and miscellaneous tumors (P = 0.003). Mean WHO-QOL scores were also compared in relation to type of therapy and it was observed that parents of patients undergoing chemotherapy alone (P = 0.049) and chemotherapy with surgery (P = 0.003) showed statistically significant improvement after therapy [Table 4].{Table 4}

 Discussion



Assessment of HRQOL in pediatric cancer patients and the effect of type of cancer and type of therapy is the first step in way of medical team to predict the kind of care needed by these patients and their families. An interesting observation in the demographic profile of our patients was male preponderance. Most of the resource rich countries report slight male preponderance, whereas National Cancer Registry from Indian Council of Medical Research shows a higher male:female ratio. [2],[19] A plausible explanation to this is the gender bias observed in developing countries, and hence, under reporting of female patients to the health facilities. Impact of socioeconomic status of the parents on HRQOL has not been explored in literature and this domain should also be studied.

Patients with leukemia undergo intensive chemotherapy, along with radiotherapy for an initial duration of 4 months. The adverse effects of therapy are immense, and hence they showed insignificant improvement in QOL scales in follow-up. Van Schaic et al. [13] used HUI-2 in 100 children with various malignancies and reported patients with leukemia to have poorer scores than patients with Hodgkin's lymphoma. [20] In our study, patients with CNS tumors also had poor outcome, which was in line with the results of Glaser et al. [19] and Le Galès et al. [20]

Pain and self-care were the attributes maximally affected, and both showed significant improvement in our patients. Pain was reported as one of the most affected attribute by other researchers also. [18],[21],[22] Children in our setup are mostly taken care of by the parents themselves. Being a parent reported scale; there may be a bias on self-care aspect.

Patients undergoing chemotherapy with radiotherapy or combination of chemotherapy, surgery and radiotherapy were found to show less improvement in scores, due to treatment-related complications.

Quality of life of parents also showed a parallel pattern and was affected by the type of cancer and type of therapy. The WHO-QOL BREF has been used in past to assess QOL of cancer patients and their care givers, and all of them showed diminished scores in different domains. [23],[24],[25] Bahrami et al. have reported a difference in the nurses' and patients' perception of QOL. There was an underestimation in social relationship and environmental domains by nurses, when compared to that by patients themselves. [26]

Limitation of our study is large loss to follow-up. We were able to follow 76% of patients. The major reason was financial constraint. Our hospital caters mostly to patients with lower socioeconomic status, who are not able to afford expensive therapy. Requirement for repeated blood and blood product transfusions for the patient, and multiple donations demanded by the parents also brought hindrance in the treatment. Secondly, sample size in each group was small. Some patients developed complications of therapy. This aspect was not taken into consideration. If more number of patients can be recruited in each group, intragroup comparisons can be made. The scales used were parent reported scales. Eiser and Morse reported a difference in parent and child reported scores, especially in psycho social domains of health. [27]

Having a child suffering with malignancy is a great stress on QOL of patients as well as their family. Our country is a resource poor country. Support system to take care of various aspects to improve this quality is virtually nonexistent in public as well as private health sector. There is need for developing a comprehensive system with involvement of clinical psychologists, social workers, and educationists, who are especially dedicated to take care of these children and their families during the prolonged hospital stay. School absenteeism to some extent can be taken care of by part time teachers employed at these centers for education of these children. Provision for health insurance for providing financial assistance to these families may further help reduce the burden on these families.

 Conclusions



The present study is the only study on assessment of QOL in children with various malignancies from North India. The results of the study can be implied in clinical practice to develop need based interventions to provide comprehensive care for the patients and their caregivers. Further multi-centric prospective studies with a larger sample size can be planned to see the effect of these interventions. Involvement of psychologists and social workers in setups providing treatment to such patients can be foreseen.

References

1Arya LS. Malignancies in childhood. In: Ghai OP, Gupta P, Paul VK, editors. Essential Pediatrics. 6 th ed. New Delhi: CBS Publishers & Distributors; 2005. p. 561-79.
2Barr R, Riberio R, Agarwal B, Mesera G, Hesseling P, Magrath I. Pediatric oncology in countries with limited resources. In: Pizzo PA, Poplac DG, editors. Principles and Practice of Pediatric Oncology. 5 th ed. Philadelphia: Lippincott Williams and Wilkins; 2006. p. 1605-17.
3Reis LA, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, et al., editors. SEER Cancer Statistics Review, 1973-1998. National Cancer Institute; 2001. Available from: http://www.seer.cancer.gov/publications/csr1973-1998/2001. [Last accessed on 2014 Jan 10].
4Available from: http://www.apps.who.int/who/en/definition. [Last accessed on 2014 Jan 10].
5Meadows AT, Black B, Nesbit ME Jr, Strong LC, Nicholson HS, Green DM, et al. Long-term survival. Clinical care, research, and education. Cancer 1993;71:3213-5.
6Friedman DL, Meadows AT. Late effects of childhood cancer therapy. Pediatr Clin North Am 2002;49:1083-106, x.
7Nelson RN, Miles MS, Reed SB, Davis CP, Cooper H. Depressive symptomatology in parents of children with chronic oncologic or hematologic disease. J Psychosoc Oncol 1995;12:61-75.
8Grootenhuis MA, Last BF. Predictors of parental emotional adjustment to childhood cancer. Psychooncology 1997;6:115-28.
9Dahlquist LM, Czyzewski DI, Copeland KG, Jones CL, Taub E, Vaughan JK. Parents of children newly diagnosed with cancer: anxiety, coping, and marital distress. J Pediatr Psychol 1993;18:365-76.
10Sawyer MG, Streiner DL, Antoniou G, Toogood I, Rice M. Influence of parental and family adjustment on the later psychological adjustment of children treated for cancer. J Am Acad Child Adolesc Psychiatry 1998;37:815-22.
11Russell KM, Hudson M, Long A, Phipps S. Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports. Cancer 2006;106:2267-74.
12Yaris N, Yavuz MN, Yavuz AA, Okten A. Assessment of quality of life in pediatric cancer patients at diagnosis and during therapy. Turk J Cancer 2001;31:139-49.
13Van Schaik CS, Barr RD, Depauw S, Furlong W, Feeny D. Assessment of health status and health-related quality of life in survivors of Hodgkin′s disease in childhood. Int J Cancer Suppl 1999;12:32-8.
14Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzman S. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992;10:923-8.
15Chirivella S, Rajappa S, Sinha S, Eden T, Barr RD. Health-related quality of life among children with cancer in Hyderabad, India. Indian J Pediatr 2009;76:1231-5.
16Lansky SB, List MA, Lansky LL, Ritter-Sterr C, Miller DR. The measurement of performance in childhood cancer patients. Cancer 1987;60:1651-6.
17Lansky LL, List MA, Lansky SB, Cohen ME, Sinks LF. Toward the development of a play performance scale for children (PPSC). Cancer 1985;56:1837-40.
18Available from: http://www.who.int/substance_abuse/research_tools/whoqolbref/en/. [Last accessed on 2014 Jan 10].
19Glaser AW, Abdul Rashid NF, U CL, Walker DA. School behaviour and health status after central nervous system tumours in childhood. Br J Cancer 1997;76:643-50.
20Le Galès C, Costet N, Gentet JC, Kalifa C, Frappaz D, Edan C, et al. Cross-cultural adaptation of a health status classification system in children with cancer. First results of the French adaptation of the Health Utilities Index Marks 2 and 3. Int J Cancer Suppl 1999;12:112-8.
21Banks BA, Barrowman NJ, Klaassen R. Health-related quality of life: Changes in children undergoing chemotherapy. J Pediatr Hematol Oncol 2008;30:292-7.
22Consolidated Report of Population Based Cancer Registries 2001-2004. National Cancer Registry Programe. Available from: http://www.icmr.nic.in/ncrp/report_pop_2001-04/cancer_p_based.htm. [Last accessed on 2014 Jan 10].
23Ergün FS, Oran NT, Bender CM. Quality of life of oncology nurses. Cancer Nurs 2005;28:193-9.
24Chang EW, Tsai YY, Chang TW, Tsao CJ. Quality of sleep and quality of life in caregivers of breast cancer patient. Psychooncology 2007;16:950-5.
25Carter G, Lewin T, Rashid G, Adams C, Clover K. Computerised assessment of quality of life in oncology patients and carers. Psychooncology 2008;17:26-33.
26Bahrami M, Parker S, Blackman I. Patients′ quality of life: A comparison of patient and nurse perceptions. Contemp Nurse 2008;29:67-79.
27Eiser C, Morse R. Can parents rate their child′s health-related quality of life? Results of a systematic review. Qual Life Res 2001;10:347-57.