All 47 patients were interviewed. The sociodemographic details of the participants and the tumour related variables are presented in Table 1 and 2.
Table 1 Patient demographics
Age in years
|
Number of patients
|
20-30
|
9
|
31-40
|
13
|
41-50
|
10
|
51-60
|
6
|
61-70
|
7
|
<70
|
2
|
Gender
|
|
Male
|
27
|
Female
|
20
|
Marital Status
|
|
Single
|
10
|
Married
|
36
|
Separated
|
1
|
Education
|
|
College
|
29
|
School
|
18
|
Table 2 Tumor details
Tumor Types
|
Number of patients
|
Vestibular Schwannoma
|
3
|
Diffuse astrocytoma
|
4
|
Anaplastic Oligodendroglioma
|
3
|
Glioblastoma Multiforme
|
9
|
Oligodendroglioma
|
3
|
Diffuse glioma
|
5
|
Meningioma
|
11
|
Cavernoma
|
1
|
Xanthoastrocytoma
|
1
|
Ependymoma
|
1
|
Pilocytic astrocytoma
|
1
|
Third ventricular colloid cyst
|
1
|
Others*
|
4
|
*Left proximal Internal carotid artery stenosis, Sellar supra sellar lesion-Silent corticotroph adenoma, Posterior falcine metastasis KCO Renal Cell Carcinoma s/p excision of cerebellar metastasis, Extensive necrosis with features of vasculitis and perivascular and intramural mixed chronic inflammatory infiltrates
The overarching themes that emerged in the preoperative phase were presence or absence of worry and communication quality with the doctor. Worry about the diagnosis, treatment and cure was reported by 53.19%, while 46.80% reported an absence of worry. Communication with the doctor about their worries, fears and concerns was done by 65.95%. Followed by the communication with the doctor, 61.70% reported being reassured, while 17.02% reported that they were not reassured despite the communication that has happened. Nineteen percentage decided not to communicate about their worries and concerns to the doctors. Of the forty-seven cases, there were 16 cases of awake surgeries, where 4.25% reported concerns about the procedure. Of the total, four cases were recurrences. While three of them (6.38%) expressed worry at having to undergo the procedure again, one person was stoic about the same.
The overarching themes of the post-operative scenario were the presence or absence of worry and the perception about the communication between the doctor and the patient. After the operation, 70.21% reported no worry about the surgery, while 27.65% reported worry after the procedure. There was a group which was not worried at the outset but was worried after the surgery. This constituted 10.63%. All the necessary information was perceived to be communicated by the doctor to the patients by 85.10%, while 12.76% felt the doctors did not pass all the relevant information to them. A subset of the patients (25.53%) was not convinced about the information passed on to them by their doctor.
The preoperative concerns centred on the operation itself (14.89%), loss of functionality and mobility (12.76%), the outcome of the surgery and aesthetic concerns (10.63%), family concerns (12.76%) and possibility of being confined to home (4.25%). The other preoperative concerns voiced by 2.12% were on probable inability to attain the life goals, the diagnosis itself, being in coma, future, sense of doom, tolerate uncertainty, and personality changes.
The post-operative concerns were about the biopsy result (8.51%), difficult post-operative period and infections (6.3%), unspecific worries (6.3%), functionality (2.12%), family concerns (2.12%), and further treatment (2.12%).
The group which was not worried initially started to worry after the surgery due to factors such as family’s overprotection and apparent show of undue concern, the experience of pain which triggered anxiety, post-operative speech difficulty, sleeplessness and periorbital edema.
Thematic Analysis
The analysis revealed the following overarching themes which are described and illustrated using the verbatim responses of the patients.
Almost half of the patient sample experienced worry before the surgery. Their worry was about their loss of functionality and mobility, the prospect of becoming dependent on others, and about the probable personality change.
‘I am worried that I may lose my mobility.’
‘ I am upset at the possibility of losing my functionality. I am also concerned that my personality may change after the surgery’.
‘No matter what, there are chances of losing my mobility and functionality. I find it very hard not to worry about it.’
‘I wonder whether I will be as functional as I am now after the surgery. Hope I will not become bedbound or dependent on others’
Most of the worry was about the procedure itself rather than about the diagnosis.
‘What if something goes wrong during the procedure? I am scared that my children will be badly affected if something goes wrong.
‘I have undergone the same procedure before. So I know what to expect and it worries me.’
‘I am scared the surgery may render me unable to realize my goals in life.’
‘This is not like any other surgery…. This is brain surgery. The very idea scares me.’
‘The surgery may cause another insult to my already compromised brain.’
Patients are comfortable in their communication with the doctor before getting operated. No matter what nature of the worry is, talking with their doctor seems to help. Many patients reported easing of their worry and fear after communicating with their doctor.
‘I was very much concerned about losing my hair as an aftermath of the surgery. I also had this constant fear that I may go into coma. The doctor spent some time with me and cleared my worries.’
‘Who will not be worried before surgery? However, my doctor has explained everything in detail. I trust my doctor completely.’
‘My doctor has supported me emotionally and has educated me on what to expect during the awake bit. Talking with the doctor really helped.’
‘To begin with, I am an anxious person. After listening to the doctor, I am relatively calm and feel that I am in good hands.’
‘I am anxious and worried about the side effects of the surgery. I talked about this to the doctor. He then cleared my concerns.’
Post-surgery, the patients experience a dip in their worry, especially those who had reported anxiety and worry before the surgery.
'Nothing happened as bad as I feared. There are no side effects except for the occasional pain. All my worries are now gone.’
‘As I feared, they did not shave off my hair. I can now move and talk like before. It is not a worry for me anymore.’
‘The awake procedure went well. Surprisingly I can remember all of that happened when I was awake. I sang a lot during the procedure. I have no worries now; I am happy.’
‘I was very anxious earlier. Now, I am calm. I am happy that doctors continue to communicate things to me.’
‘After the procedure, I feel there was really nothing to be so worried about’.
A significant percentage of patients is happy with the information they have received from their doctor.
‘ I am happy that doctors are available for communication and they take time to talk.'
‘ Doctors have given me all the necessary information I need regarding the post-surgery care and about the next steps’.
'I felt at ease because of the willingness of the doctors to communicate despite their busy schedule'.
There is also a sizeable chunk of patients who are not convinced, despite their perception of having received all the information.
‘Alright, everything went well. Nothing happened as I feared, but I still am worried. The funny thing is I don’t know why.’
‘I am worried about the weakness I am experiencing on my right hand. I am also unable to sleep. I did talk to the doctor, but I am not sure he understands my state of mind.’
‘Although the doctor discussed everything with me, I am seriously worried about my biopsy results.
‘I was never worried, to begin with, but now the swelling I have in my right eye is of concern.’
‘The doctor has communicated adequately, but whenever I experience pain, I think that the disease is coming back. That thought disturbs me so much.’