Keywords
pediatric - psycho-oncology - children and adolescents - cancer - India
Introduction
The incidence of childhood cancer in most populations in the world ranges from 75
to 150 per million children per year.[1] In India, 1.6 to 4.8% of all cancers are seen in children below 15 years of age,
most commonly acute lymphoblastic leukemia. The most common solid tumors are brain
tumors, mainly gliomas and medulloblastomas.[2]
Cancer is a traumatic experience for a child who faces numerous stressors and has
to adapt to physical and psychosocial challenges, disrupting typical family, social,
and school life.[3]
[4]
[5]
[6]
[7] They experience illness-related uncertainties, academic, social, self-esteem, and
depressive issues.[8]
[9] Authors have described mood and sleep disturbances, behavioral, multiple somatic
and post-traumatic stress symptoms, and peer interaction difficulties in these patients.[10]
[11]
[12]
Studies have specifically addressed psychosocial issues in adolescent patients. Neville's
exploratory, descriptive study found that among the various disease groups, adolescents
with leukemia experienced the most significant psychological distress.[13] Abrams et al have emphasized the impact of cancer on adolescents' physical and emotional
health.[14] Zebrack et al have noted clinically significant chronic distress in 12% of adolescents
and young adults with cancer through the first year following diagnosis.[15]
Most of the studies mentioned above were done in western nations. A few studies done
in South East Asia have documented anxiety and depressive symptoms and somatic, social
and behavioral problems.[16]
[17]
[18]
In India, very few studies have looked at psychosocial problems in children with cancer.
Banerjee et al described excellent psychosocial functioning in patients and survivors
in a study on music therapy.[19] In contrast, other authors found that almost 61% of children with acute lymphoblastic
leukemia during the first remission experienced emotional distress.[20]
[21] Thus, the available literature from India is limited to children having a specific
cancer diagnosis or survivors. Also, the distress rates reported are variable. In
particular, no study, to our knowledge, has specifically addressed problems faced
by children and adolescents with cancer, nor were they assessed in a specialist psycho-oncology
service setting.
We conducted a specialist pediatric psycho-oncology service in a tertiary cancer care
center in India, provided by a multidisciplinary mental health professional team and
based on a consultation-liaison model. For this study, we aimed to identify the types
of problems and factors associated with children and adolescents' emotional/behavioral
problems with cancer referred to our specialist pediatric psycho-oncology service.
Materials and Methods
We conducted a retrospective observational study in the psycho-oncology clinic of
a metropolitan tertiary cancer care center. We retrospectively analyzed patient-related
data from medical charts, psycho-oncology assessment sheets, and electronic medical
records of all new referrals of children and adolescents with cancer to the psycho-oncology
service for five years from January 2011 to December 2015. We included records of
patients of age up to 18 years, with a cancer diagnosis and active disease-modifying
treatment or supportive care for the management of cancer treatment-related adverse
effects or on follow-up after completion of treatment for 2 years or less, using purposive
sampling. Patients referred for neurocognitive assessment as part of research trials,
on follow-up for more than 2 years since treatment completion, and records with incomplete
data were excluded. Patients not on any disease-modifying treatment referred to palliative
care services and receiving the best supportive care only were also excluded.
As part of our standard care in psycho-oncology assessment and management of the patients,
we take a clinical history and interview the patient for mental status examination.
This assessment includes sociodemographic information, disease- and treatment-related
data, birth and developmental history, personal history, types of problems reported
in any domain (physical, emotional, academic, family/peer relationship, and other),
past history of emotional/behavioral problems, family history of mental health issues,
and details of the mental status examination. The emotional/behavioral problems were
noted in the history and interview and documented in the case records ([Supplementary File S1]).
The primary outcome was to identify the number and types of problems reported by children
and adolescents with cancer referred to our pediatric psycho-oncology service. Our
secondary outcome was to examine the factors associated with a) any reported problem
in any domain (physical, emotional, academic, family/peer/interpersonal, other) and
b) emotional problems specifically.
Data obtained were 1) sociodemographic (age, gender, financial ability, and family
structure), 2) outpatient or inpatient status, 3) site-specific cancer diagnosis,
4) treatment status (active disease-directed treatment/supportive care/follow-up),
5) past history of emotional problems, 6) problems expressed in the clinical interview
(number and type), and 7) the presence of family conflict (as expressed by patients
in the clinical interview and documented in the records). The parents' ability to
pay hospital medical charges was noted depending on the family's income and the type
of registration (general or private category), as recorded in the patient hospital
registration details. The problems were categorized into physical, emotional (worry,
anxiety, sadness, irritability, depression, feelings of guilt, less hopeful, or low
self-esteem), cognitive/academic (difficulties in achieving expected grades in education),
family relationship (issues pertaining to family dynamics or communication as reported
by patients or parents or family conflict), or interpersonal or peer relationship,
as recorded from the history, clinical interview, and mental status examination in
the departmental standard psycho-oncology assessment sheets. If there were multiple
problems, we recorded the problem that the patients expressed as the most distressing
in the assessment notes ([Supplementary File S2]).
Outcome measures were demographic and clinical variables, the presence of problems
in children and adolescents, and disease- and treatment-related and other factors
associated with problems in general and emotional problems.
Statistical Analysis
We used descriptive statistics for demographic, clinical variables, numbers and types
of problems. Equivalency of proportions in contingency tables was tested using the
chi-squared test or Fisher's exact test, as applicable for examining the association
of factors with the presence of problems (any type) and emotional problems. Statistical
analyses were performed using SPSS 20 (IBM SPSS Statistics for Windows, Version 20.0.
Armonk, NY: IBM Corp.). We excluded the missing data from analysis and a p-value of 0.05 or less was considered significant.
Ethics
The procedures followed were in accordance with the ethical standards of the responsible
committee on human experimentation and with the Helsinki Declaration of 1964, as revised
in 2013. The Institutional Ethics Committee of Tata Memorial Hospital, Mumbai, approved
the study (Ref. no. 1674 dated May 11, 2016). A waiver of informed patient consent
was obtained due to the retrospective nature of the study.
Results
Patient Characteristics
The total number of patients referred to the specialist pediatric psycho-oncology
service in the 5 years and included in the study was 278. Out of 278 patients, 185
(66.5%) of the referrals were males, and 193 (70%) were outpatients. The mean ages
were 11.01 years (standard deviation [SD]: 4.54) for the overall sample, 7.45 years
(SD: 3.03) for under 12 years, and 15 years (SD: 1.6) for adolescents. In addition,
167 (60%) patients belonged to a nuclear family and 267 (96%) families had no or limited
ability to afford medical payments. However, 261 (94%) families did not express any
financial constraints. Family conflicts were reported in 9//278 (3%) of the patients
([Table 1]).
Table 1
Patients' characteristics
|
Variable
|
|
n
|
Percentage
|
|
Gender
|
Male
|
185
|
66.5
|
|
Female
|
93
|
33.5
|
|
Age
|
<12 y
|
148
|
53.2
|
|
>12 y
|
130
|
46.8
|
|
Outpatient/inpatient
|
Outpatient
|
193
|
69.4
|
|
Inpatient
|
85
|
30.6
|
|
Able to pay medical charges
|
No
|
106
|
38.1
|
|
Partial
|
161
|
57.9
|
|
Yes
|
11
|
4.0
|
|
Family structure
|
Nuclear
|
167
|
60.1
|
|
Joint
|
111
|
39.9
|
|
Cancer diagnosis
|
Lymphomas and leukemias
|
162
|
58.2
|
|
Bone and soft tissue
|
44
|
15.8
|
|
Brain
|
45
|
16.3
|
|
Neuroblastoma
|
5
|
1.8
|
|
Retinoblastoma
|
3
|
1.1
|
|
Germ cell tumors
|
6
|
2.2
|
|
Wilms tumor
|
1
|
0.3
|
|
Others
|
12
|
4.3
|
|
Treatment
|
Curative intent
|
245
|
88.1
|
|
Palliative intent
|
6
|
2.2
|
|
Supportive care
|
27
|
9.7
|
|
Family conflicts
|
Present
|
9
|
3.2
|
|
Absent
|
269
|
96.8
|
|
Financial stressors
|
Present
|
17
|
6.1
|
|
Absent
|
261
|
93.9
|
Leukemias and lymphomas were the most common cancers in the referred children and
adolescents, seen in 162/278 (58.2%) patients. The most common solid tumors were of
the brain and bone and soft tissue (45, 16.2% and 44, 15.8% patients, respectively).
Hematolymphoid cancers were seen more in children than in adolescents (54.3% vs. 45.7%).
Among solid tumors, neuroblastomas, retinoblastomas, and Wilms tumor were seen only
in children (5, 3, and 1, respectively). Also, 245/278, i.e., 88% of the patients
were on treatment with curative intent at the referral time ([Table 1]).
Problems Reported
All children and adolescents referred to the psycho-oncology service had expressed
problems. For example, 164/278 patients (59%) had emotional/behavioral problems. Physical
health-related problems were seen in 58 of 278 (21%) and academic issues in 39/278
patients (14%). In addition, 17/278 patients (6.1%) reported family/peer/interpersonal
relationship problems and other issues.
The types of problems seen in the two groups of children and adolescents are described
in [Table 2]. Emotional problems were seen in 89/148 (60%) of the children compared with 75/130
(57.7%) of adolescents, whereas physical health-related problems were seen more in
31/130 adolescents (23.8%) than in children (27/148, 18.2%).
Table 2
Types of problems in children versus adolescents (N = 278)
|
Types of problems
|
Children
n (%)
|
Adolescents
n (%)
|
Odds Ratio (95% CI)
|
p-Value
|
|
Emotional
|
89 (60.1)
|
75 (57.7)
|
1.1 (0.68 to 1.78)
|
0.68
|
|
Physical
|
27 (18.2)
|
31 (23.8)
|
1.14 (0.39 to 1.27)
|
0.25
|
|
Academic
|
23 (15.5)
|
16 (12.3)
|
1.31 (0.66–2.6)
|
0.43
|
|
Family/peer/interpersonal
|
7 (4.7)
|
6 (4.6)
|
1.02 (0.33–3.13)
|
0.96
|
|
Other
|
2 (1.4)
|
2 (1.5)
|
0.87 (0.12–6.31)
|
0.89
|
|
Total
|
148
|
130
|
|
|
Associated Factors
Factors associated with emotional/behavioral problems are outlined in [Table 3]. More outpatients than inpatients faced emotional problems. Males had a higher prevalence
of emotional problems as compared with females (111/185, 60% vs. 53/93, 56.9%). Emotional/behavioral
issues were seen almost equally in patients belonging to nuclear and joint families.
The proportion of children and adolescents having emotional problems was slightly
higher in families able to pay hospital charges than those who had none or limited
ability (7/11, 63% vs. 157/267, 59%). Although there was a trend for the factors mentioned
above to emotional/behavioral problems, none of the factors were statistically significant.
Table 3
Factors associated with the presence of emotional/behavioral problems
|
Sr. No.
|
Variables
|
Number of patients
|
Patients with emotional problems–n (%)
|
Odds ratio (95% CI)
|
p-Value
|
|
1
|
Admission status
|
193
|
116 (60.1)
|
1.16 (0.69–1.94)
|
0.57
|
|
Outpatient
|
|
Inpatient
|
85
|
48 (56.4)
|
|
2
|
Age
|
|
|
1.1 (0.68 to 1.78)
|
0.68
|
|
12 y or less
|
148
|
89 (60.1)
|
|
> 12 y
|
130
|
75 (57.7)
|
|
3
|
Sex
|
185
|
111 (60)
|
1.13 (0.68–1.87)
|
0.63
|
|
Male
|
|
Female
|
93
|
53 (56.9)
|
|
4
|
Able to pay medical charges
|
106
|
61 (57.5)
|
0.90 (0.55–1.48)
|
0.89
|
|
No
|
|
Partial
|
161
|
96 (59.6)
|
|
Yes
|
11
|
7 (63.6)
|
|
5
|
Family status
|
167
|
99 (59.2)
|
1.03 (0.63–1.67)
|
0.904
|
|
Nuclear
|
|
Joint
|
111
|
65 (58.5)
|
|
6
|
Family conflict
|
269
|
159 (59.1)
|
|
0.83
|
|
No
|
|
Yes
|
9
|
5 (55.5)
|
|
7
|
Cancer diagnosis
|
|
|
1.48 (0.91–2.40)
|
0.112
|
|
Hematolymphoid
|
162
|
102 (62.9)
|
|
Solid
|
116
|
62 (53.4)
|
|
8
|
Treatment
|
|
|
1.33 (0.62–2.84)
|
0.694
|
|
Curative intent
|
145
|
85 (59.2)
|
|
Palliative intent
|
6
|
4 (66.6)
|
|
Supportive care
|
27
|
13 (48.1)
|
Discussion
We describe our large-series analysis results covering 5 years on problems expressed
by children and adolescents with any cancer diagnosis referred to a pediatric psycho-oncology
service in India. Previous studies done in India have focused on survivors of childhood
cancer and in children with specific cancers such as acute leukemias.[20]
[21]
All patients referred to our pediatric psycho-oncology service expressed problems.
Emotional/behavioral problems were the most common, expressed by 59% of the children
and adolescents (60% of children and 58% of adolescents) with cancer. Physical problems
were seen in 21% of patients. This figure is in line with previous studies by Hedström
et al in which the authors noted that emotional and physical domains were sources
of distress by children and adolescents with cancer.[22] Enskar and von Essen observed that children receiving cancer treatment experienced
more psychosocial than physical stressors, as compared with those who had completed
treatment.[23]
We found that emotional/behavioral and academic issues were more common in children,
and physical health-related problems were more frequently expressed by adolescents.
Other authors have reached a similar conclusion, and they noted that children and
adolescents with cancer process their distress differently according to their age.[17]
[18] Interestingly, this finding of differences, e.g., children and adolescents' difficulties
with cancer, has come from studies done in the South East Asian region.[16]
[17]
[24] Because we also found this difference in our study, we speculated whether there
might be some cultural explanations. Li et al have performed a wide survey in Asia
regarding the care of adolescents and young adults with cancer.[25] This inquiry brought out the suboptimal provision of oncological care for this group
of patients. However, differences between children and adolescents related to their
concerns were not the scope of this study. Zebrack and Isaacson have raised the possibility
that adolescents might have been able to cope better, leading to better self-management,
thus resulting in less emotional problems.[26] They are also very conscious of health and hence, maybe more concerned about their
physical health-related matters.
Nonetheless, we observed that 58% of adolescents experienced emotional problems, much
higher than 12 to 15% found by Zebrack et al.[15] It should be noted that the latter finding was for chronic and delayed distress,
and the study included adolescent and young adult groups and not children. This result
is different from our study population, i.e., children and adolescents, and we looked
at problems of children and adolescents with cancer expressed at referral to our psycho-oncology
service.
Only approximately 4.5% of both children and adolescents expressed any problem with
interpersonal relationships, and 3% reported family conflicts. Erker et al found,
in their study of the effect of childhood cancer on family functioning, that children's
relationship with family worsened if their siblings were depressed.[27] Katz et al stated that parent–child conflicts tended to occur during later months
of treatment.[28] An explanation for our finding could be that these problems were probably not perceived
as significant compared with emotional or physical problems. We did not specifically
look at how long these conflicts were present or the dyad in which these occurred
(patient–parent/sibling). Also, 245 out of 278 (88%) patients referred to our specialist
pediatric psycho-oncology service were on active disease-directed treatment with curative
intent. This figure is consistent with what has been found by other authors who concluded
that children and adolescents experienced various problems during the demanding treatment
process.[4]
[23]
Hematolymphoid, brain, and bone cancers were the three most frequent diagnoses in
90% of the referred patients, a finding similar to other studies.[2]
[29] In studying the factors associated with emotional/behavioral problems, we noted
that these were present more in patients with hematolymphoid cancers than in those
with solid tumors (63% vs. 53%). Allart-Vorelli et al in their systematic review recorded
that psychological quality of life (QoL) is affected in hematological cancers.[30] The intensity and duration of treatment could be contributing to the higher prevalence
of emotional problems in the children and adolescents included in our study. Also,
our patients travel far from their homes, often from different states of India, to
undergo treatment, and they need to stay in temporary accommodation away from their
siblings and peers and their familiar environment. This factor may have led to more
psychological problems. We also found that a higher proportion of patients undergoing
treatment with palliative intent had emotional problems than those undergoing curative
or supportive treatment. The disease's burden being higher and probable survival being
lower could be explanatory factors for a more significant psychological impact on
patients undergoing treatment with palliative intent. We noted a trend for male gender
and outpatient status being associated with emotional problems, but these were not
statistically significant. A recent retrospective analysis by Sohn et al on variables
related to psychological distress experienced by children and adolescents diagnosed
with cancer did not find any statistically significant factor.[31] Our finding corroborates with this report. However, Sohn et al[31] mainly focused on maternal depression and not on age, gender, family, disease, treatment,
and other parameters that we looked at. Also, the study population was inpatients
and within 3 months of the diagnosis, in contrast to the patients referred to our
service at any point in their disease trajectory before completion of 2 years of treatment.
It is important to highlight that financial constraints were not a factor associated
with the presence of problems. Although 96% of families in our study were unable or
partially able to pay medical charges, they did not report financial stressors. It
had been seen earlier that many children used to default on treatment due to finances.
To address this problem, the institution and department had taken necessary steps
to have their social service program, whereby all patients are given financial help
for treatment so that they could continue on their treatment course. Hence, all children
and adolescent cancer patients are provided pecuniary help from the hospital and pediatric
oncology social services unit.[32] Family structure and conflict were not associated with emotional problems. Maybe,
these issues were not expressed, even though present.
These results provide evidence that emotional/behavioral difficulties and physical
distress are most common in the referred children and adolescents with cancer in India,
in keeping with previous studies in other countries.[4]
There are certain limitations to our study. It was a retrospective analysis done on
a referral-based clinical practice. However, the period for the study was 5 years,
covering a large number of patients. It helped to identify trends in the referral
patterns seen. All patients referred to us had expressed some problem. The referral
bias is understandable; because ours is a specialized psycho-oncology service at levels
3 and 4 equivalence as per the National Institute of Clinical Excellence (NICE) guidelines,
(National Institute for Clinical Excellence, 2004) Guidance on Cancer Services: Improving
Supportive and Palliative Care for Adults with Cancer (Cancer service guideline CSG4),
only the patients with significant problems who could not be addressed at levels 1
and 2 would be referred to us.[33] The institution's pediatric oncology service has counselors and lay volunteers who
could address certain problems faced by some of the patients and referred those with
complex symptoms to us. Although this practice tied in well with the guidelines, demonstrating
correct identification and appropriateness of referrals, it led to a decrease in the
number of patients referred to our service (∼22% of all patients needing psychosocial
support in the specified study period). This restriction could be addressed by integrating
psycho-oncology in the pediatric oncology clinic itself. We did not address time since
diagnosis at the time of patient referral to our service. Although some authors have
addressed dispositional styles as more predictive of distress than diagnosis or treatment,
we did not study this factor in our analysis.[34]
[35] Academic problems were as reported by child/parent and not according to formal neurocognitive
testing. Formal psychiatric diagnoses were not a part of this study, as our aim was
to understand the nature of problems in general faced by this patient group.[15] We did not use any rating scale but conducted clinical interviews for the assessments
with an interdisciplinary approach, signifying a more comprehensive evaluation process.
Our study was retrospective in design. Further research should focus on prospective
studies in understanding the changes in needs and concerns in children and adolescents
diagnosed with cancer along their treatment trajectory, as well as on clinical psychiatric
disorders.
Conclusion
This is the first report of 5-year data on children and adolescents with cancer referred
to a specialist pediatric psycho-oncology service in India. Our results indicate that
children and adolescents with cancer have different emotional and physical health
problems, academic performance, and relationship domains. Emotional/behavioral problems
were the most common and seen in almost 60% of the referred patients. Although these
problems tended to be more in children than adolescents, males, and those attending
outpatient clinics, these differences were not statistically significant. Our study
contributes to the existing literature in understanding issues in children and adolescents
referred to pediatric psycho-oncology services. It highlights the need for service
enhancements in psycho-oncology using structured protocols for assessment and interventions
should be formulated and audited for quality-of-care provision. Further research in
prospective observational and outcome studies is needed to look at long-term outcomes
and the effectiveness of interventions. National cancer care policies should incorporate
psychosocial services for children and adolescents with cancer with the availability
of appropriate interventions, especially in low-resource settings.
