Assessment of behavioral symptoms of post-operative patients with intracranial tumor and distress among their caregiver

http://doi.org/10.33698/NRF0273-Divya Thakur, Manju Dhandapani, Sandhya Ghai, Manju Mohanty

ABSTRACT

Objective: Behavioral symptoms in patients with intracranial tumor and distress among their caregivers are well studied previously.Several studies have shown association between behavioral symptoms of patients and caregivers distress. Present study aimed to assess the behavioral symptoms of post-operative patients with intracranial tumor and distress among their caregivers. Methods: A total of 80 post operative patients with intracranial tumor and their caregivers were studied from Neurosurgery units PGIMER, Chandigarh in July- August 2017. Subjects were interviewed by using Neuropsychiatric Inventory Questionnaire (NPI-Q) to assess the behavioral symptoms in patients and distress among their caregivers at discharge. Results: The common behavioral symptoms present in patients of intracranial tumors at discharge were agitation/ aggression, depression, irritability, anxiety, disturbed nighttime behavior and change in appetite. One third of the caregivers suffered distress due to disturbed night time behavior, change in appetite and agitated behavior of the patient. Less than one fourth had distress due to irritable, depressive, apathetic and anxious behavior of their patient. Conclusion: The post operative patients with intracranial tumor suffered behavioral symptoms and lead to distress among their caregivers. Timely assessment, identication and management of behavioral symptoms in patients will be helpful in reducing caregivers distress. Caregivers can be empowered to identify and manage the behavioral symptoms of patient at home and seek healthcare advice or counseling.

Keywords: Neuropsychiatric Inventory Questionnaire, Intracranial tumor, Behavioral symptoms

Introduction

Behavioural symptoms in post- operative patients with intracranial tumor are due to the sequel of tumor or its treatment1. Frequently reported behavioral symptoms in patients include irritability, aggression, anxiety and depression2-4. Behavioral symptoms of the patients causes distress among caregivers due to their symbiotic relationship and had impact on functional, psychological and social well being of patients as well as their caregivers5.

Behavioral symptoms of the patients a r e o f t e n i g n o r e d d u r i n g t h e i r hospitalization and caregiver’s issues are   n e v e r a d d r e s s e d b y h e a l t h c a r e professionals.Nurses remain with the patients for long duration of time and are the primary source of support for them as well as to their caregivers. Hence, assessment of the behavioral symptoms of patients may be benecial  in  improving  the patient’s outcome. Caregivers can be empowered for early identication and management of behavioral symptoms at home and help in reducing caregivers’ distress as well. The nurse can address health issues with the patients and the caregivers like solving t heir doubts, developing prevention, health promotion and rehabilitation initiatives also. Therefore, the nurse plays important role in improving the health status, as he or she can spread awareness among patients and caregivers regarding brain tumor 6.

Patients with brain tumor face some common signs and symptoms which are headache, weakness, numbness, nausea, vomiting and seizures. The brain tumor can cause behavioral symptoms due to the effect of tumor location, size, growth and effects of the pressure of interrelated brain areas. The type of behavioral symptoms may include irritability  or  aggression, d i s i nhibition, confusion, apathy, depression, anxiety, emotional lability etc4. A b o u t 6 0 – 9 0 % p a t i e n t s w i t h intracranial tumor face cognitive impairment along with some emotional and environment such as spouses, family members and friends. It is important to pay attention to the early identication of these symptoms because of the substantial impact of the disease and its treatment on the daily life of patients and their caregivers.

Both the tumor and its treatment may damage the brain and it is commonly believed that the frontal lobe plays an important role in behavior. Tumor location in other areas might also result in behavioral and personality changes. It was reported that the prevalence rates of changes in personality and behavior in glioma patients varies from 8% to 67% and was found to be 100% in patients of bilateral gliomas7.

Boele et al conducted a study that focuses on changes in personality, behavior, mood issues, hallucinations and psychosis in brain tumor patients. Neurological, cognitive and psychiatric symptoms affect the daily life of patients with primary intrinsic brain tumors8 .Some of the behaviors which cause frustration are not the patients fault but are really a consequence of the brain tumor. Cognition, behavioral changes3 (Dhandapani et al).behavior and emotion are controlled by Approximately, 80% of female caregivers reported sleep disturbances associated with depression, anger and anxiety. Intracranial tumor and its treatment has direct effect on the brain functioning. The common symptoms experienced by patients are neurological, cognitive and psychiatric symptoms. Behavioral symptoms can affect the patients ability to involve in clinical decision-making and lead to poor survival. These symptoms can inuence the patients direct social several areas of the brain9.

Caring a patient with the intracranial tumor is unique because patients had functional as well as neurological decits, behavioral as well as personality changes and cognitive  decits. This  leads  to i n c r e a s e d s t r e s s a n d b u r d e n f o r caregivers.Caregivers of the patient with intracranial tumor face multiple challenges such as physical, social, psychological and emotional aspects that adversely impact the daily life10.Intracranial tumor patients and caregivers have a high level of stress during the treatment of the disease or during hospitalization. Caregivers need help to manage the changes in patients behavior, especially in the last stage of disease11.

Aoun et al concluded that caregivers of patients with primary brain cancer showed signicantly higher levels of strain, lower levels of mental well being and a higher level of ADL workload as compared to caregivers of patients with all other cancers. The study also showed the usefulness of care support needs assessment tool to assess the support needs of family caregivers of patients12.

A systematic review reported that the elements of distress among caregivers are isolation, responsibility, guilt, death, anxiety, meaning, personal growth, spirituality and religion13. Untreated behavioral and cognitive changes after primary brain tumor (PBT) can result in challenging behaviors with limited treatment  approaches.Caregivers  e x p e r i e n c e  b u r d e n  (p h y s i c a l  a n d psychological) and distress because caring is similar to the full-time job.Nurses can address the health care needs of the patient based on assessment of changed behavior.

Caregivers have key role to assess the behavioral symptoms at home and report as soon as possible. Nurses can empower them to assess change in behavior of patient and can guide them how to manage. Early assessment of behavioral changes in patient c a n h e l p i n r e d u c i n g p r o l o n g e d hospitalization through prompt actions and caregivers distress can be minimized. Hence,  present  study  assessed the behavioral symptoms of post operative patients with intracranial tumor and distress among caregivers.

Material and Methods

A descriptive study was done to assess the behavioral symptoms in post–operative patients with intracranial tumorand distress among their caregivers.Using total enumeration technique, 80 conscious and consenting post operative patients with intracranial tumors who were admitted in Neurosurgery units PGIMER, Chandigarh and their caregivers, were enrolled. Ethical clearance was obtained from Institute Ethics Committee, and written consent was taken from all the study subjects and their caregivers.

Tools used for the present study were subject proforma and NPI-Q (Neuro Psychiatry Inventory Questionaire). Subject proforma includes patient’s socio- demographic prole, clinical prole and caregivers socio-demographic prole.NPI- Q consists of 12 behavioral symptoms and the maximum score for severity of each behavioral symptom was three and the minimum score was one. The total score was three for severity of each behavioral symptoms in patients. Hence, based on these behavioral symptoms, caregivers distress was scored between zero to ve. The maximum score for caregivers distress due to each behavioral symptom was ve and the minimum score was zero. The total score for each caregivers distress was ve. The methods of data collection were self–report by caregivers, interview, questionnaire  and  hospital  records.Self report was obtained through the caregivers. Subjects were interviewed by using NPI Questionnaire to assess the behavioral symptoms of post operative patients with intracranial tumor and distress among their caregivers at the time of discharge. Data were entered and coded in SPSS (Statistical Package for Social Sciences) version 20. Appropriate descriptive statistics such as percentage was used for data analysis, based on the study objectives.

Results

Socio-demographicvariables

Socio-demographic variables of post operative patients with intracranial tumor are depicted in Table 1. Half of the patients were in the age group of 41-60years (middle adults) with mean age of 43.46+ 13.60

Table 1: Patients’ socio-demographic variables

N=80

Socio-demographic variables of the patient	Mean+ SD or f (%)
Age ( years)	43.46 +13.60
18-40 (young adult)	33 (41.3)
41-60 (Middle adult)	40 (50.0)
>60 (Older adult)	7 (8.7)
Gender : Male	34 (42.5)
Female	46(57.5)
Marital status
Married	61(76.3)
Unmarried	16 (20.0)
Widow/er	3 (3.7)
Educational status
Illiterate and primary	28 (35.0)
Elementary and senior secondary	40(50.0)
Graduate or above	12(15.0)
Monthly per capita income (Rs.) ( assessed by Parsad scale )	4225.89+8629.735
>6254	10 (12.5)
3125-6253	15 (18.7)
1876-3126	12 (15.0)
938-1875	37 (46.3)
<938	6 (7.5)

years. More than half of the patients (57.5%) were females and 76.3% patients were married.  Half  of  the  patients  had  e l ementary and senior secondary education. Per capita income was between Rs. 938-1875 in approximately half of the patients (46.3%) with mean of Rs. 4225.89 + 8629.73.

Clinical variables

Clinical variables of the post operative patients with intracranial tumor are depicted in  Table  2.  The  patients  were d i a g n o s e d w i t h g l i o m a ( 2 6 . 3 % ) ; meningioma (26.3%), pituitary tumor (13.7%) and other type of tumor like schwannoma, craniopharyngioma etc. (33.7%). Most of the patients, (85%) had supratentorial tumors and out of 80 patients,

Table 2: Clinical variables of the patients

N=80

Clinical variables of the patient	f (%)
Diagnosis of patient Meningioma Glioma Pituitary tumor Others*	21 (26.3)
	21(26.3)
	11 (13.7)
	27(33.7)
Location
Supratentorial	68 (85.0)
Infratentorial	12 (15.0)
Surgery done
Craniotomy and excision	70 (87.5)
Transphenoidal surgery	10(12.5)
Types of tumor
Benign	49 (61.3)
Malignant	31 (38.7)
Radiotherapy received
Yes	22 (27.5)
No	58 (72.5)
Chemotherapy received
Yes	2 (2.5)
No	78 (97.5)
Duration of illness
<6 months	61 (76.3)
>6 months	19 (23.7)

*Craniopharyngioma, acoustic schwannomas, metastatic carcinoma (cerebellar), calvarial mass lesion, temporal SOL, ependymoma, hemangioblastoma 87.5% had undergone craniotomy and excision. More than half of the patients (61.3%) were having benign tumor. Around one fourth of the patients were receiving radiotherapy (27.5%) and chemotherapy was received by only 2.5% of the patients. Duration of illness in the majority of patients is less than six months (76.3%).

Socio- demographic variables of caregivers

Caregivers socio- demographic variables are depicted in Table 3. More than half of the caregivers (62.5%) were in the age group of 18-40years (young adults) with mean age of 36.94+ 13.15 years. Two third of the caregivers (68.7%) were males and around the three fourth of the caregivers (71.3%) were married. More than half of caregivers were employed (60%) and 36.3% caregivers were patients’ children. Length of time of caregiving was two weeks to one month by 38.7% of the caregivers. Majority of patients (92.5%) were healthy.

Behavioral symptoms in patients

Prevalence of each behavioral symptoms based on severity in post operative patients with intracranial tumor is depicted in Table 4. Delirium, euphoria and hallucination were absent in all patients. Around half of the patients, 43.8% were having agitation/ aggression, about one- third (32.5%) of patients were having depressive symptoms. One-fourth patients, (28.8%) were found to have anxiety. Apathy was present in 17.5% of the patients and very few patients (5%) were having disinhibition. One-fourth of patients (23.7%) were reported to have irritability, where 7.5% of patients reported with motor disturbance. One third of patients (35%) showed disturbed nighttime behavior and 38.7% of patients were having change in appetite.

Table 3: Socio-demographic variables of caregivers

N=80

Socio-demographic variables of the caregivers	f (%) or Mean+ SD
Age(years)	36.94+13.15
18-40(young adult) 41-60(Middle adult) >60(Older adult)	50 (62.5) 27 (33.8) 3(3.7)
Gender : Male	55(68.7)
Female	25(31.3)
Marital status
Married Unmarried	57 (71.3) 23 (28.7)
Occupation
Employed	48(60.0)
Unemployed	32 (40.0)
Relationship with patient Parents Spouse Children Siblings In-laws Others ( maternal aunt, paternal uncle, nephew, cousin )	12 (15.0) 19 (23.8) 29(36.3) 7(8.7) 8(10.0) 5 (6.2)
Length of time of care giving
<1week	8(10.0)
1-2week	26 (32.5)
2weeks-1month 1-6months	31 (38.7) 15 (18.8)
Health status
Healthy	74 (92.5)
Unhealthy	6 (7.5)

Distress among caregivers

Prevalence of distress based on the severity among caregivers of post operative patients with intracranial tumor at discharge is depicted in table 5. Around one third (32.6%) of the caregivers were having distress due to the agitation of their patients. One-fourth (26.2%) of caregivers had distress due to patients depressive behavior. Distress due to the anxious behavior of the patients was

Table 4: Prevalence of each behavioral symptoms based on severity in patients with intracranial tumor

 N=80

Behavioral symptoms of patients with intracranial tumor	No f (%)	Mild f (%)	Moderate f (%)	Severe f(%)
1.Agitation/Aggression	45 (56.25)	22 (27.5)	8 (10.0)	5 (6.25)
2.Dysphoria/Depression	54 ( 67.5)	15 (18.75)	6(7.5)	5 ( 6.25)
3. Anxiety	57 ( 71.25 )	12 ( 15.0 )	6 ( 7.5 )	5( 6.25)
4. Apathy/Indifference	66 ( 82.5 )	8 (10.0)	2 (2.5 )	4 ( 5.0 )
5. Disinhibition	76 ( 95.0 )	1 (1.25)	1 (1.25)	2 ( 2.5)
6. Irritability/Lability	61 ( 76.25)	11 ( 13.75 )	5 ( 6.25 )	3 ( 3.75)
7. Motor Disturbance	74 ( 92.5 )	4 ( 5.0 )	–	2 ( 2.5)
8. Night-time Behaviour	52( 65.0)	10 ( 12.5 )	9 ( 11.25 )	9 ( 11.25)
9.Change in appetite/Eating	49 ( 61.25)	12 (15.0 )	7 ( 8.75 )	12 ( 15.0 )

 present in 21.2% of caregivers. Distress due to the apathetic behavior of patients was present in 15% of the caregivers. Very few caregivers (5%) complained distress due to disinhibition. Distress due to the irritable behavior of their patients was reported by 17.5% of caregivers. At discharge, 7.5% caregivers were distressed due to the presence of motor disturbances in their patients. About one-third of caregiver (33.7%) was distressed due to the disturbed nighttime behavior of the patient. Distress due to eating pattern of their patients was reported by 27.5% caregivers.

Discussion

The behavioral symptoms of the patient are often ignored by the health care professionals. Early identication with periodic assessment of the patients is necessary to improve their outcome and also to reduce the caregivers distress. After discharge of the patient only caregiver is the person who can assess change in patients behavior and also can manage in time. The patients’ outcome can be improved with

Table 5: Prevalence of distress among caregivers of patients with intracranial tumor

N=80

Caregivers distress due to each behavioral symptoms of patients	No f (%)	Minimal f (%)	Mild f (%)	Moderate f (%)	Severe f (%)	Extreme f (%)
1. Due to Agitation/Aggression	54 (67.5)	10 (12.5)	6 ( 7.5 )	4 ( 5.0)	1 (1.25)	5 ( 6.25)
2. Due to Dysphoria/Depression	59(73.75)	10 (12.5)	2 (2.5)	5 (6.25)	3 (3.75)	1 (1.25)
3. Due to Anxiety	63 (78.75)	8 (10.0)	4 (5.0)	2 (2.5)	2 (2.5)	1 (1.25)
4. Due to Apathy/Indifference	68 (85.0 )	4 ( 5.0 )	4 ( 5.0 )	2 (2.5)	2 (2.5)	–
5. Due to Disinhibition	76 (95.0)	–	1 (1.25)	1 (1.25)	2 (2.5)	–
6. Due to Irritability/Lability	66 (82.5 )	6 (7.5 )	1( 1.25)	5 (6.25)	1 (1.25)	1 ( 1.25)
7. Due to motor disturbances	74 (92.5 )	3 (3.75)	1( 1.25)	–	–	2(2.5)
8. Due to Night-time Behaviour	53 (66.25)	8 ( 10.0 )	2 ( 2.5 )	11 (13.75)	3 (3.75)	3 ( 3.75)
9. Due to Change in appetite /Eating	58 ( 72.5 )	8 ( 10.0)	4 ( 5.0 )	8 ( 10.0)	1 (1.25)	1 ( 1.25)

 

reduced behavioral changes at home.

In the present study, more than half of the patients were female (57.5%), in contrary to this a previous study showed that men were more affected with brain tumor as compared to women14. It was found that the male: female ratio was 1.5:1 as males are more likely to be diagnosed with brain tumours as compared to females1 5 . A study showed that the incidence of brain tumours rises after approximately 30 years of age. Similarly the present study showed same age group. In the present study, most of the patients had supratentorial tumors, less than two third of the patients had benign tumors whereas more than one third had malignant tumors. The ndings were in line with the report of Dhandapani et al in which more than half of the patients had benign and more than one third had malignant tumors with majority of supratentorial tumors3.

The present study shows that the more than half of the caregivers were young adults. Two third of the caregivers were male. Male dominance in caregiving population in present study, may be because of males in the family are accompanying patients to the hospital. Majority of the caregivers were employed. Almost all the caregivers were healthy; very few were suffering from some illness. Similarly, previous study also showed that caregivers of patients were young adults, most of them were male and approximately half of them were employed. Majority of the caregivers reported themselves healthy, less than one fourth were suffering from some illness16. N e u r o p s y c h i a t r y i n v e n t o r y questionnaire were used to assess the behavioral symptoms of post operative patients with intracranial tumor and distress among their caregivers. The tool consists of cardinal symptoms for assessing patient’s behavior as well as their caregivers distress due to these symptoms. It is less time consuming, easy to use and can be conducted as an interview.

Various studies showed that the patients with intracranial tumor suffer behavioral symptoms. In the present study majority of patients with intracranial tumor suffered at least one behavior symptom which were assessed using NPI-Q. There are various behavioural symptoms which may be present in the post-operative patients of intracranial tumor. The common behavioral symptoms present in our patients were agitation/aggression, depression/ dysphoria, anxiety, disturbed nighttime behavior and change in appetite (approximately one third). Irritability is present in less than one third of the patient whereas less than one fourth of the patients reported apathy and very few had disinhibition and motor disturbances. Similar to this, previous study showed that patients reported signicantly more behavioral problems after tumor diagnosis. More than three fourth of the patients had signicant problems with at least one frontal behavioral syndrome after diagnosis. Approximately half of the patients reported apathy, disinhibition and more than half had executive dysfunction. More than half of informants reported apathy, executive dysfunction and less than one fourth had disinhibition14. A systematic review reported that prevalence of changes in personality and/or behavior varied from lower to higher rate in glioma patients and was high in a case series with bilateral gliomas. The changes in behavior and personality were present in patients and associated with distress7.

Another study  in  similar  setting s h o w e d t h a t t h e c o m m o n e s t neuropsychological symptoms were anxiety, agitation, irritability,  depression a n d s l e e p d i s t u r b a n c e s . T h e neuropsychiatric symptoms and severity scores were reduced signicantly at one month, and further at six months. At six months of follow-up, symptoms persisted in approximately one fourth of the patients and nearly one third had anxiety, depression, sleep disturbances, agitation, irritability and disinhibition3.In one more study, out of 70 patients, approximately half of the  patients  had  irritability/lability, a n x i e t y , a g i t a t i o n / a g g r e s s i o n , depression/dysphoria and nearly one fourth reported disturbed nighttime behavior or change in appetite. Other less common behavioral changes seen in patients included apathy, elation/ euphoria, hallucination, delusion, and motor disturbances16. The neuropsychological symptoms could be associated with tumor itself or due to phases of treatment results in white matter changes or parenchymal destruction.

Many studies were conducted on distress among caregivers of intracranial tumor patients and all of them had some degree of burden. The level of caregivers distress in the present study could be due to the patients behavioral symptoms and was assessed by NPI-Q. The present study reported that around one fourth of the caregivers had distress due to each of symptoms present  in  their  patients  i.e. a g i t a t i o n / a g g r e s s i o n , depression/dysphoria, anxiety, apathy, irritability/liability, disturbed nighttime behaviour and due to dull appetite. A study showed that about half of the caregivers were found to have mild burden, less than one third with moderate burden and 5 % had severe burden. Sleep disturbance was reported by more than one third of the caregivers. While more than half of them felt that caregiving leads to physical strain, half of them felt that it was inconvenient and felt overwhelmed due to the caregiving experience. The majority of the caregivers also felt the behavioral changes in patients to be upsetting16.

The d i s t r ess i n caregivers of intracranial tumor patients was found to be mainly due to agitation, irritability and change in appetite of the patient. Previous study showed that family caregivers face specic challenges when caring the patients who experienced signicant neuro- cognitive and neurobehavioral disorders associated with brain tumors17. In another study it was found that the caregiver of a person with brain tumor often faces cancer-related issues i.e. fatigue, depression and grief18.It was discussed in previous study that caregivers experienced signicantly more burden when the patient had behavioral changes such as agitation, depression, irritability and disturbed night time behavior19. These changes not only affect patient’s life but also the caregivers life. Along with various other factors, behavioral symptoms in patients with intracranial tumor also adversely affect the caregivers and results in distress. Hence, periodic assessment of behavioral changes in patient can reduce the caregivers distress while caring20‐22. Limitation of the study is caregivers distress and each symptoms were not assessed in detail. Further studies can be done to assess the individual behaviour symptom among these patients and its inuence on caregiver burden.

P o s t o p e r a t i v e p a t i e n t s w i t h intracranial tumor had behavioral symptoms. Similarly, caregivers who take care of these patients suffered distress. Timely identication and management of behavioral symptoms in patients by the caregivers will be helpful to improve patients outcome. Caregivers distress can be reduced by empowering them how to assess the behavioral symptoms and manage them. NPI-Q tool can be used by caregivers by providing appropriate instructions at the time of discharge so that they can early identify and manage the changes in behavior of their patients.

Conclusion

The post operative patients with intracranial tumor had behavioral symptoms and this lead to distress among their caregivers. Timely assessment by using appropriate tool, identication and management of these behavioral symptoms in patients will be helpful in reducing caregivers distress. Caregivers can be empowered to identify and manage these behavioral symptoms of patients at home and seek healthcare advice or counseling.

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