Impact of Early Palliative Care on Newly Diagnosed Brain Tumour Patients

INTRODUCTION

Brain tumours are a group of neoplasms which originate from different cells of the central nervous system or metastasise to the central nervous system from systemic cancers.^[1] The incidence of brain tumours in India ranges from 5 to 10/100,000 population with an increasing trend.^[2] Amongst them, the most prevalent type is brain metastases, occurring in around 25% of cancer patients. The ratio of metastasised to primary brain tumours is 10:1.^[3] Brain tumours can present with either focal or generalised clinical signs and symptoms. Elevated intracranial pressure (ICP) is the cause of general symptoms including seizures, headache, nausea and vomiting. Compression of specialised regions or tissue destruction is the cause of focal symptoms, which include unilateral weakness, personality abnormalities, dysphasia, motor weakness and/or memory loss.^[4] Hence, these patients with many different symptoms need specialised palliative care. The lack of palliative and rehabilitative treatments such as supportive care, counselling and speech therapy, as well as the high number of emergency visits and acute admissions to hospital, may cause stress amongst patients and caregivers.^[5] The concept of ‘early’ palliative care has been introduced more recently to differentiate palliative interventions delivered earlier in the disease trajectory from those in the terminal phase or last days of life.^[6] Palliative care is more effective when it is started early in the disease trajectory. Early palliative care, in addition to traditional therapy, has been shown to improve quality of life (QoL) of patients and their caregivers according to several experts. Furthermore, early palliative care implementation can help to provide tailored and effective care for the patient, which enhances patient comfort and meets their needs.^[7] Although there were research data published for incidence of brain tumour and symptom burden in patients have brain tumours and impact of palliative whole brain radiotherapy in Indian population, there are not enough studies regarding the impact of integration of early palliative care in this type of patient population with involvement of palliative medicine specialists. Hence, we conducted this study to know the impact of early palliative care in patients having brain tumours by assessing improvement in symptom burden and overall QoL of these patients of the western Indian population.

The primary aim of our study was to assess symptom burden in brain tumour patients, and the secondary aim was to assess the impact of integration of early palliative care on it and overall QoL in these patients.

MATERIALS AND METHODS

This was a prospective analytical study conducted at the state Cancer Institute of Western India. This study was approved by the Institutional Review Committee.

After taking informed consent, 100 patients were included in this study according to the following inclusion and exclusion criteria.

RESULTS

Total 100 patients enrolled in our study. Table 1 shows demographic data of all patients (Age, gender, diagnosis and treatment taken). Among the total 100 patients, 27 were of primary brain tumour and 73 of secondary brain tumour and the rest number of patients during each follow-up.

Table 2 shows comparative data of IPOS score severity from baseline to 6^th month.

Among physical symptoms, significant improvement was noted in pain, nausea, vomiting and constipation. Among emotional issues, significant improvement was noted in feeling anxious or worried about illness, family or friends feeling anxious or worried about illness and feeling at peace. For communication problems, significant improvement was noted in being able to share feelings, which had adequate information and practical issues being addressed. We also noted significant improvement in total score of IPOS. We found these significant improvements by ANOVA test and also by post hoc ANOVA test.

Table 3 shows the frequency of clinically relevant symptoms reported by patients during baseline to 6^th month follow-up among 17 IPOS items described in percentage. ‘Family or friends feeling anxious or worried about illness’ was the most frequent issue reported at baseline in 100% patients. On 1^st month follow-up, ‘Not able to share feeling with family or friends’ was the most frequently reported issue in 95.83% patients. ‘Weakness’ was most frequently reported symptom at 3^rd month follow-up in 85.18% patients. On 6^th month follow-up, the most frequent reported symptom was ‘poor mobility’ in 88.23% patients.

Table 4 shows mean (SD) of single and multi-item scores of EORTC–QLQ-BN-20 from baseline to 6^th month follow-up. Among all these brain neoplasm 20 QoL domains, significant improvement was noted in future uncertainty, headache, seizures, bothering due to hair loss and bothering due to itchy skin from baseline to 6^th month in ANOVA test and also in post hoc ANOVA. For the rest of the scores, there was no improvement.

DISCUSSION

Palliative care includes managing symptoms and offering assistance to patients and carers at every stage of life-from first referral to end-of-life care and during bereavement. Palliative care aims to enhance the patient’s QoL by a multidisciplinary approach to help the patient live as actively as possible and neither hastening nor postponing death.^[10]

Yamanaka et al. and Chow et al. evaluated patients with brain metastasis and found a significant symptom burden. They commonly found headache, general fatigue, drowsiness, mood disturbance, seizure, disturbed sleep, difficulty in remembering and cognitive dysfunction. They found some symptoms have been secondary to treatment (hair loss, itching from radiation therapy and weakness of the legs from corticosteroids), and some were probably non-specific for brain cancer (uncertainty about the future and pain), but others are probably due to the primary disease.^[11,12]

Armstrong et al. studied the symptom burden in patients with primary brain tumours. They found that more than 50% of patients had at least ten concurrent symptoms, and 40% of patients reported at least three symptoms with moderate-to-severe severity. Fatigue, disturbed sleep, headache, difficulty remembering and distress were the most severe symptoms reported by all tumour grades.^[13] Similarly, in our study, the most common distressing symptoms with variable severity and frequency were nausea, vomiting, weakness, pain and poor mobility. While some of these symptoms are seen in patients with other malignancies, headache, neurological deficits, fatigue and cognitive dysfunction, and seizure are specifically encountered in patients with brain tumours. Neurological symptoms in patients with brain tumour are mainly associated with increased ICP, which may alter the QoL of patients and require palliative care intervention such as symptom management, psychological, and sociological care of patients and caregivers.

The physical symptoms and functional impairment of brain tumour may result in more specific neuropsychiatric and behavioural manifestations. Especially, anxiety and depression are commonly noted in brain tumour patients. Liu et al. studied QoL in patients with brain tumours and showed mixed findings, with considerable anxiety in 29– 60% of cases and depression in 7.9–90% of cases. This has also shown an adverse impact on survival and is one of the most important independent predictors of QoL.^[14] Anxiety may result from situational stress related to diagnosis and prognosis or may be directly related to the consequences of the tumour.^[15] As per IPOS, in our study, 98.07% of patients and 100% of caregivers are anxious or worried about their illness. However, on subsequent follow-up, it was significantly reduced to 58.8% and 52.9%, respectively. It may be due to palliative intervention such as managing physical symptoms and addressing psychological, emotional or communication issues with repeated counselling. Similar results found in other studies suggest that psychological symptoms like anxiety were associated with higher symptom burden, and palliative care intervention can reduce it significantly.^[16,17]

When compared to other systemic malignancies, caregivers of brain tumour patients typically experience higher levels of distress and exhaustion. We found in our study, as per IPOS, 100% of caregivers had anxiety and worries about their patient’s illness. Neurologic impairments are extremely distressing, especially cognitive dysfunction, communication difficulties, mood swings and personality changes have a negative impact on caregivers’ well-being. Many day-to-day nursing care and psychosocial issues of patients were not addressed in routine oncological treatment. Dave et al. found that providing information and training about nursing care issues of cancer patients to caregivers helps to improve their knowledge, attitude and practice significantly. This may be potentially beneficial in taking better care of their patients.^[18] In our study, patients had many unaddressed practical and communication issues which were addressed by a palliative care physician, like providing detailed information in a stepwise manner starting from the early phase of diagnosis, followed by preparing patients and caregivers for future transitions of care.

Fatigue and drowsiness are the most concerning symptoms in patients with brain tumours affecting their QoL than those with other tumours. Studies of Slotman et al. and Wong et al. found deterioration in domains of fatigue and drowsiness during subsequent follow-up.^[19,20] Our findings are comparable with their results. QoL in brain tumour patients is a subjective evaluation which involves a person’s multi-dimensional well-being in terms of functional or physical status, cognitive function, as well as social and emotional well-being. There are many determinants of physical, cognitive, emotional, and social functioning which are influenced by the patients’ social environment, severity of physical symptoms, general health, spirituality, coping and existentiality. QoL scores are also affected by tumour location in the brain and treatment received.^[21] The score of headache, seizure and bothering due to itchy skin and hair loss were significantly improved in subsequent follow-up, while motor dysfunction, communication deficit, visual disorders and weakness of legs deteriorated, which are comparable with the study of Diana Steinmann.^[22] They reported that 3 months after the start of radiotherapy, QoL deteriorated significantly in the areas of global QoL, physical function, fatigue, nausea, pain, appetite loss, hair loss, drowsiness, motor dysfunction, communication deficit and weakness of legs. They reported that three months after the starting of radiotherapy, QoL deteriorated significantly in the areas of global QoL, physical function, fatigue, nausea, pain, appetite loss, hair loss, drowsiness, motor dysfunction, communication deficit and weakness of legs, although the score for headaches remained stable.^[22] In our study, some domains of QoL were improved in subsequent follow-ups, while some domains deteriorated as reported in EORTC–QLQ-BN-20.

The improvement of headache and other domains might be due to early involvement of palliative physician, while deterioration in some domains of QoL may be due to intracranial and extracranial progression of disease or adverse treatment effects. As disease progresses, neuro-cognitive deficit may become irreversible, and even these minor deficits can affect health-related QoL and functional independence. Early integration of palliative care into the treatment schedule can help patients and their caregivers to live good QoL as much as possible.

CONCLUSION

We conclude that brain tumour patients are suffering from various distressing symptoms. Early involvement of palliative care specialists with neuro-oncology treatment can help in better management of various physical and psycho-social symptoms, which lead to better QoL of patients and their caregivers.