|Year : 2020 | Volume
| Issue : 3 | Page : 566-568
Quality of life of Indian children with cancer: Measuring what matters
Revathy Krishnamurthy1, Rajiv Sarin2
1 Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, Canada
2 Department of Radiation Oncology, Tata Memorial Centre, Mumbai, India
|Date of Submission||12-Aug-2020|
|Date of Decision||13-Aug-2020|
|Date of Acceptance||14-Aug-2020|
|Date of Web Publication||19-Sep-2020|
Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Krishnamurthy R, Sarin R. Quality of life of Indian children with cancer: Measuring what matters. Cancer Res Stat Treat 2020;3:566-8
“Children will listen to you after they feel listened to.”
– Jane Nelsen
Quality of life (QoL) is a multidimensional construct comprising physical, emotional, and social components of well-being and function. The American Society of Clinical Oncology has designated QoL as an outcome for patients with cancer second in importance only to survival. In adults, it is a self-reported measure that uses validated multi-item questionnaires. Several validated QoL tools are widely used in research to determine the impact of cancer and its treatment on QoL of adults with cancer., In contrast, little research has been done on the measurement of QoL in children and its determinants. The QoL of children aged 8 years and above is recommended to be determined through self-reporting.
Children, while relying on guidance from their adult caregivers, are also very impressionable. It is, therefore, vital to identify what is most troublesome or upsetting from a child's point of view. It is important, whenever possible, to make children feel involved in the decisions pertaining to their health.
A study conducted by investigators at St. Jude's Research Hospital recognized that the domains of QoL in pediatric patients with cancer may be different from those historically described for adults. They commenced their study by asking three questions to pediatric patients with cancer – (1) What makes a good day for you? (2) What makes a bad day for you? and (3) Are there some things you like to do that you cannot do now? Subjective interviews, though supremely informative, are time-consuming and personnel dependent, thus making objective questionnaires scored on Likert scales, the preferred method of QoL assessment. An ideal pediatric QoL questionnaire is disease specific, relevant, comprehensive yet short, takes into account the culture and lifestyle of the children answering it, and in a language suitable for children. Several QoL questionnaires have been developed and validated for the pediatric patients with cancer and cancer survivors, including the QoL-Cancer Survivors, Pediatric QoL Inventory 4.0, Miami Pediatric Oncology QoL tool, QoL in Childhood Cancer, and the TNO AZL Children's Quality of Life (TACQOL). However, there is no validated pediatric QoL questionnaire specific to the Indian population. Identifying this gap, Shunmugasundaram et al. from two cancer centers in Chennai report the process and findings of their study to develop and validate a new questionnaire to assess the QoL of Indian pediatric patients with cancer, called the CI-PedOnc QLQ 31.
In the first phase of the study, they developed a questionnaire which was then validated using the standard methodology. A total of 32 items were shortlisted from a pool of 101 possibly relevant items, framed into simple questions in English, and subjected to 2 rounds of the Delphi process. The resultant 31 questions scored on a 4-point Likert scale were subjected to face validation and then pilot testing in 10 patients, culminating in the final CI-PedOnc QLQ 31. Factor analyses using principal component analysis for discriminant validity and internal consistency reliability were performed. Discriminant validity for gender and treatment status has also been reported. Overall, the questionnaire is valid (four factors with eigenvalues above 1.00 with a variance of 46.53%) and reliable (α = 0.833) within the reported parameters (low response burden).
We commend the remarkable efforts of the authors, recognizing all the practical difficulties they might have encountered while conducting a psychosocial study in a pediatric population in the Indian health-care settings. As the questionnaire development and validation were done in a nonprofit charitable institution (Cancer Institute, Adyar) and a private cancer center, this study represents the different socioeconomic and health-care settings.
As acknowledged by the authors, further work on the questionnaire could be in the direction of translation into regional languages, developing proxy forms, and adding visual analogs for younger children. The questionnaire could also be specialized further for common pediatric cancer groups such as hematolymphoid, bone-and-soft tissue, central nervous system, and abdominal malignancies and age subgroups, recognizing the rapid developmental changes in children. While the mean time of about 8 min taken to complete the questionnaire does not seem too long, a shorter version could be very useful for use in the routine clinical practice, especially in the resource-constrained settings.
Future research in this field could benefit greatly from the involvement of patients when shortlisting the items for the questionnaire and the involvement of parents, caregivers, and nurse practitioners in the development process. A detailed reporting of validity (construct and concurrent) or a confirmatory factor analysis as well as the test–retest reliability, interrater reliability, sensitivity to change, minimal important difference, and other measures of clinical utility can serve as a prelude to the use of the questionnaire in the clinical setting.
Although the Classical Test Theory has historically been used for questionnaire validation, the trend in the recent past has been to use the item response theory, where the resulting item bank can be the basis of a more customizable measure for meeting a researcher's or clinician's needs., A cognitive interviewing methodology is emerging to be useful for pediatric QoL questionnaire development, demonstrating that children as young as 8 years old could respond to items and talk about all aspects of their health and well-being in meaningful ways.
The inclusion of nonverbal clues and relational availability (such as eye contact, mood, and facial expressions) as well as signs related to the living context of the child (such as medical and care history and family dynamics) in pediatric questionnaires has also been recommended, especially in the setting of advanced-stage cancers and palliative care. There is also a stress on including more items on such themes as maintaining hope and finding meaning in life instead of only focusing on the worries and frustrations faced by the children.
Indian parents may have a tendency to shield and protect their children from the knowledge about their disease and avoid unpleasant discussions about the prognosis and treatment side effects., This is a significant cultural response that should be taken into account while assessing QoL in Indian children with cancer.
In conclusion, this study represents a major progress addressing a very neglected aspect of oncology practice and research outside the developed world. This study conducted in a metropolitan city of South India has relevance for the rest of the country and several other countries that are yet to delve into this aspect of childhood cancers. We applaud the efforts of the authors but feel that this is only the beginning. More research and validation in a clinical practice setting are required to ensure that treatment modalities improve and maintain the QoL of children with cancer.
| References|| |
Bullinger M. Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research. Restor Neurol Neurosci 2002;20:93-101.
Outcomes of cancer treatment for technology assessment and cancer treatment guidelines. American society of clinical oncology. J Clin Oncol 1996;14:671-9.
Cella D, Chang CH, Lai JS, Webster K. Advances in quality of life measurements in oncology patients. Semin Oncol 2002;29:60-8.
Asthana S, Bhatia S, Dhoundiyal R, Labani SP, Garg R, Bhatnagar S. Quality of life and needs of the Indian advanced cancer patients receiving palliative care Assessment of the quality of life, problems, and needs of the advanced cancer patient receiving palliative care. Cancer Res Stat Treat 2019;2:138-44. [Full text]
Ravens-Sieberer U, Karow A, Barthel D, Klasen F. How to assess quality of life in child and adolescent psychiatry. Dialogues Clin Neurosci 2014;16:147-58.
Treatment decisions regarding infants, children and adolescents. Paediatr Child Health 2004;9:99-114.
Hinds PS, Gattuso JS, Fletcher A, Baker E, Coleman B, Jackson T,et al
. Quality of life as conveyed by pediatric patients with cancer. Qual Life Res 2004;13:761-72.
Anthony SJ, Selkirk E, Sung L, Klaassen RJ, Dix D, Scheinemann K, et al
. Considering quality of life for children with cancer: A systematic review of patient-reported outcome measures and the development of a conceptual model. Qual Life Res 2014;23:771-89.
Shunmugasundaram C, Elangovan V, Radhakrishnan V. Construction and validation of a quality of life tool for pediatric patients of Indian origin with cancer: A single-center prospective study. Cancer Res Stat Treat 2020;3:445-54. [Full text]
Rattray J, Jones MC. Essential elements of questionnaire design and development. J Clin Nurs 2007;16:234-43.
Edelen MO, Reeve BB. Applying item response theory (IRT) modeling to questionnaire development, evaluation, and refinement. Qual Life Res 2007;16 (Suppl 1):5-18.
Irwin DE, Stucky BD, Langer MM, Thissen D, DeWitt EM, Lai JS, et al
. PROMIS pediatric anger scale: An item response theory analysis. Qual Life Res 2012;21:697-706.
Irwin DE, Varni JW, Yeatts K, DeWalt DA. Cognitive interviewing methodology in the development of a pediatric item bank: A patient reported outcomes measurement information system (PROMIS) study. Health Qual Life Outcomes 2009;7:3.
Avoine-Blondin J, Parent V, Fasse L, Lopez C, Humbert N, Duval M, et al
. How do professionals assess the quality of life of children with advanced cancer receiving palliative care, and what are their recommendations for improvement? BMC Palliat Care 2018;17:71.
Kamper R, Van Cleve L, Savedra M. Children with advanced cancer: Responses to a spiritual quality of life interview. J Spec Pediatr Nurs 2010;15:301-6.
Singh RK, Raj A, Paschal S, Hussain S. Role of communication for pediatric cancer patients and their family. Indian J Palliat Care 2015;21:338-40.
] [Full text]
Chandrasekharan A. A tale of two patients. Cancer Res Stat Treat 2020;3:1-2