The information and support needs of patients diagnosed with High Grade Glioma

Abstract

Objective

To understand patients’ experiences of High Grade Glioma and identify and describe information and support needs along the disease trajectory.

Methods

Semi-structured interviews were conducted with 19 patients. Data was analysed using grounded theory and the constant comparative method.

Results

Four major themes were identified: (1) feelings of uncertainty around prognosis and quality of life; (2) the need for individualised information; (3) dependence on carers due to cognitive deficits, loss of balance and inability to drive; and (4) communication with health professionals around prognostic uncertainty and disease progression with communication barriers due to complex language deficits.

Conclusion

Previous studies in HGG pre-date the current combined modality standard of care, or examined a mixed population. This study has found that patients with HGG have needs that differ from other patients with terminal malignancy and that these needs change over time with disease progression.

Practice implications

This study has identified that patients with brain tumours may have unique needs. Health professionals need to clarify patients’ information and support needs and be aware that these change over and within time.

Introduction

Malignant High Grade Gliomas (HGG) represent approximately 80% of primary brain tumours in adults and are usually fatal, with median survival ranging from 1 to 3 years from diagnosis [1], [2]. Current treatments involve combinations of surgical resection, chemotherapy and radiation therapy, taking about 8 months for the primary treatment course [3], [4]. Suitable patients may receive further surgery, stereotactic radiotherapy, or second-line chemotherapy before dying from their disease.

Unlike patients with other terminal cancer diagnoses patients with HGG are more likely to have physical or cognitive deficits from the time of diagnosis. For example, memory or speech loss, seizures, lack of balance and visual deficits can impact on their lives from early in the disease trajectory [5]. Loss of independence occurs not only because patients have physical or cognitive deficits, but also because patients can no longer legally drive a motor vehicle, or because carers are reluctant to leave them alone for fear of seizures. Ongoing palliative treatment with corticosteroids can lead to weight gain, mood swings and personality changes. Furthermore, in HGG the prognosis is often uncertain, leading to difficulty in doctor–patient communication.

Common presenting features include cognitive decline, headaches, seizures, and motor deficits [5]. Similarly to other cancer patients, once diagnosed, individuals need to deal with many confronting emotions and make complex treatment decisions. However, more particular to the HGG patients is the need to adjust their lifestyles to accommodate the functional, emotional or cognitive decline that is a feature of this disease. Such decline is often associated with inability to work or participate in previously productive activities [2], [6]. Hence, this diagnosis tends to have a profound impact on the individual's quality of life and as a result it is likely that these patients have psychosocial needs that differ to those of other cancer patients.

Previous qualitative studies have supported this contention; however, these reports either pre-date the current combined modality standard of care [3], or examined a mixed population of high and low grade glioma patients.

An Australian study examined 18 patient/carer dyads recruited through a brain tumour support service; however, only 11% of patients had HGG and the study pre-dated current standard therapy. The following themes emerged: “a need for information and strategies for coping with uncertainty, practical support, support to return to pre-treatment responsibilities or prepare for long-term care, support to deal with social isolation and organise respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy” ([7], p. 1). Other studies have found that depression and anxiety are common and are associated with lack of motivation; bodily deterioration; finances; cognition; physical appearance; and marital difficulties [8]. A peri-operative study in Finland described 8 patients’ experiences of having a brain tumour and their perceptions of the care that they received using peri-operative interviews. Patients highlighted the importance of receiving treatment and prognostic information, and wanted more opportunities to discuss their illness with other people [9].

Building on these studies, Davies and Higginson [10] published a systematic review on the communication, information and support needs of patients diagnosed with HGG. Twelve observational studies were found for the period until 2000. This review concluded that patients require tailored information and support. A second review was conducted by Catt et al. [11] for the period from 2000 to 2007. Both reviews concluded that additional research in this area was needed, in order to develop and assess psychosocial and supportive interventions to meet patients’ information and support needs and to educate staff caring for these patients.

In Australia, temozolomide has been available for adjuvant use in grade IV HGG since 2005. While there have been previous studies exploring the needs of HGG patients, such studies have not been reported in an Australian population, or since the advent of a new standard of care including chemo-radiotherapy and subsequent adjuvant chemotherapy. In order to develop appropriate psychosocial interventions, we first need a detailed understanding of the needs of patients at various points along the disease trajectory. Therefore, the aims of this study were to: (1) gain an understanding of patients’ experiences of living with HGG and (2) identify and describe the information and support needs of these patients.

The theoretical framework that informed this study was Maslow's hierarchy of needs [12], recently adapted to palliative care by Zalenski and Raspa [13]. The five levels of need as described by Zalenski and Raspa are: (1) managing distressing symptoms; (2) fears for physical safety, of dying or abandonment; (3) affection, love and acceptance; (4) esteem and respect and (5) self-actualisation and transcendence [13]. HGG patients are likely to have similar needs and may need to work through lower level needs before they can move forward and live with their disease. This theoretical framework will be used to understand the different needs that patients describe.