Summary
Patients with glioblastoma have a short life expectancy and
an impaired quality of life. They should receive palliative care as soon as the
diagnosis is announced. A quarter of patients over 65 can return home or
nursing homes at the end of treatment by Recovery Groups. Home care must be
encouraged by coordinating various disciplines such as physiotherapy and
occupational therapy, medical and nursing care, and psychosocial support.
Patients often present with behavior, mood, and personality disorders,
impairing their rehabilitation capacities and social relationships. Isolation,
Introduction
Glioblastoma is the most aggressive and common main
malignant brain tumor in adults. Its annual incidence is 3 to 5/100 000, with a
slight predominance in humans. 1 The median age at diagnosis is 64 years. 2 The
prognosis of patients with glioblastoma remains bleak with a median life
expectancy of 15 to 17 months 1, 3 and a 5% survival rate at five years. 4
What Does Living With A Brain Tumor Mean To A Patient?
Intensity Of Treatment
The basic multidisciplinary approach for patients with
glioblastoma involves surgical resection, as complete as possible, which
clarifies the diagnosis and reduces the mass effect linked to the tumor. 3. The
surgery is followed by concomitant daily radiochemotherapy for six weeks and an
MRI four weeks later. Temozolomide is then prescribed at a dose of 150-200 mg /
m 2 / day for five days every 28 days for a duration of six cycles. This
protocol was established following a multicenter phase III study demonstrating
that, compared to radiotherapy alone, radiochemotherapy improves median
survival (14.6 vs. 12.1 months) and that at two years (26.5 vs. 10.4%). 5The
period of radiation therapy requires daily travel or hospitalization for
patients who are unable to travel. Maintenance chemotherapy is generally well
tolerated and only requires monthly clinical follow-ups with radiological
checks every two months, the wait for results, often generating a lot of
concern.
In parallel, supportive care includes the management or
prevention of seizures, thromboembolic events, intracranial hypertension, and
possible infections, particularly bronchopneumonia in the context of swallowing
disorders, and immunosuppressive treatment and hypervigilance. It is not
uncommon for myopathy or blood sugar disorders to occur on steroids. Patients
also benefit from rehabilitation measures (physiotherapy, speech therapy,
occupational therapy), and psychological support. Communication with the
patient and his family is essential and must include discussions around each
person's expectations, given the disease's grim prognosis and the progressive
loss of autonomy. 6
More Or Less Specific Symptoms And Their Psychosocial Consequences
Patients with glioblastoma may present with general symptoms
such as headache, nausea, vomiting, disturbances in alertness, and asthenia. It
is not uncommon for inaugural epileptic seizures to lead to suspect the
diagnosis. Depending on the location, neurological motor, sensory, phasic,
swallowing, or vision disorders can be observed. 7, 8
Feelings of exhaustion, anxiety, sadness, and distress are
common when dealing with a grim prognosis exposing to adjustment disorders. 9
Up to 15% of patients with glioma present with depressive symptoms in the
postoperative period, this proportion then varying between 22 and 93% depending
on the study. 10, 11
Frequently described changes occur in behavior and
personality (indifference, abulia, apathy, immaturity), emotional management
(alexithymia), thought (hallucinations, psychotic episodes), executive
functions, and image of oneself (loss of autonomy, mobility, physical change,
anosognosia). The estimate of their real frequency remains uncertain because
the studies carried out to date are essentially qualitative. 12 These
neuro-cognitive-behavioral alterations can be a source of frustration, loss of
meaning, incomprehension and can seriously interfere with family life. 9At
present, the relationship between tumor location and psychopathological impact
is not well understood. Three "frontal lobe syndromes" have been
described in patients with brain tumors located in the prefrontal area. 13
Dorsolateral lesions are associated with executive disorders; the orbitofrontal
can induce disinhibition and impulsivity, while the medial frontal induces
apathy and abulia. 13, 14 Some apathy and executive dysfunction levels are also
present when tumors are located outside the frontal lobes. 15It is likely that
very complex interactions between cortical and subcortical lesions play a role
in behavior. 15 When the paralimbic structures are involved, the mood
disturbances are more marked, so it seems unlikely that the behavioral problems
are only a direct consequence of the frontal lesions. 16 A study using
anatomy-functional association mapping (Voxel-based Lesion Symptom Mapping)
provides interesting evidence to understand neuropsychological effects
depending on tumor location. 17The ability to discern the emotions and
intentions of others is impaired with damage to the temporal lobe. More complex
components of personality and behavior, such as alexithymia and the ability to
recognize facial expressions, are affected by prefrontal, amygdala, and insula
tumors. 17
The diagnosis of glioblastoma and cumbersome management
greatly impacts the quality of life of patients and their families. 18 As in
neurodegenerative diseases, the occurrence of glioblastoma exposes people to
physical, emotional, and cognitive decline, with a risk of social stigma, and
increases the burden on relatives who are unprepared for it. 19 - 21 The
caregivers in charge of patients with glioblastoma deplore a lack of support
and a poorer quality of life than their peers, this phenomenon being
underestimated. 22, 23Many patients have limited awareness of their symptoms
and the negative impact of their emotional, relationship, neurocognitive, and
functional changes, which can have a major impact on the outcome of
post-treatment rehabilitation. 24
When, Why, And How To Approach Palliative Care?
Focus On Quality Of Life
The main concerns of patients are their loved ones, the fear
of not being themselves, the physical consequences of the disease, their finances,
and their mental capacities. Patients cared for by their partner, suffering in
their physical autonomy, with a low level of education, and experiencing
financial difficulties, are most at risk of poor life quality. 25 Almost one in
two patients who have just been revealed to have a brain tumor presents a
severe deterioration in their quality of life with a high level of distress,
this being more marked than with any other cancer diagnosis. 26
Whatever the therapeutic choice made, patients with a brain
tumor should have access to palliative care from the moment of diagnosis to
improve their own quality of life and that of their loved ones. As
hospitalization affects the quality of life, home maintenance can be favored by
oncological treatments when they are desired and possible. 27 Even in people
over 65 years of age, whose average survival is five months, treatments reduce
the risk of hospitalization for a quarter of the time remaining to live, with a
respective adjusted Hazard Ratio of 0.31 for surgery.28
Patients and their loved ones have enormous, often unmet
needs. 19, 29 Coordination of both ambulatory and hospital services, aids, and
care is essential, basic palliative care being the responsibility and
competence of everyone. Pursuing rehabilitation work is beneficial but requires
organization, investment, and availability of professionals at home. 30 An
Italian experiment demonstrated that interdisciplinary home monitoring made it
possible to reduce the rehospitalization rate by half during the last two
months of life, compared to standard monitoring. 31The frequent reasons for
rehospitalization are immobility, acute clinical deterioration, and the
occurrence of seizures, which must be addressed in advance. Relatives can
benefit from support to alleviate the domestic, organizational, and financial
burden and fight against exhaustion and isolation. The Ligue Contre le cancer,
voluntary associations, are all resources to offer respite and concrete help.
All patients should be referred to a palliative care team offering specialized
home consultations and liaising with hospital neuro-oncology, emergency, and
palliative medicine teams. The objective is to support/train relatives in their
role of caregiver, to help them renegotiate relationships and responsibilities,
to prevent/manage crises (behavioral disorders, epilepsy, degradations, etc.),
and finally to know what to expect when the patient is living his last days and
tackle the aftermath. The teams in charge must be able to offer both patients
and their loved ones time for discussion to assess and integrate the situation
by discussing the lived reality, the loss of autonomy, the preferences of each
other, the alternatives, results, and prognosis.32Questions about hydration and
nutrition at the end of life, the continuation or discontinuation of
treatments, the place, and end-of-life care, crystallize a lot of discussions.
Advance directives are rarely drawn up for fear of hastening the end, refusal
to plan, and desire to live from day to day, due to existing cognitive
alterations or team representations and strategies. These guidelines make it
possible to collate the patient's wishes on the type and level of care he would
like for himself and the choice of the person who could represent him and
participate in the decisions. They often remain vague and not very applicable
depending on the situation, which could rarely be foreseen, which does not favor
decision-making processes. The teams are, therefore, responsible for getting
patients to develop a care plan. Advance care planning, or anticipatory care
project, aims to build a personalized frame of reference for making
care-related decisions based on the patient's objectives. This also protects
the patient in the event of incompetence to determine.
What Challenges At The Very end of life?
End Of Life Place
A study involving a cohort of 5,000 patients over the age of
65 with glioblastoma showed that 21% of them were hospitalized for more than 30
days, the duration sometimes extending up to three months. For patients who
have been able to leave acute care hospital services, the stay continues in the
rehabilitation service (33%), in a nursing home (14.6%), or a hospice (36.3%)
more often than home (11.1%). 28During hospitalization or in an institution,
maintaining the quality of life is a challenge that involves interdisciplinary
care, promoting physical, intellectual, and spiritual occupational activities.
In French-speaking Switzerland, the availability of places in palliative
medicine units, in EMS or hospice being limited, the question arises of the
place of care of patients with motor and behavioral disorders, incompatible
with home care and that of funding of hospitalizations (in the context of the
applicability of specific DRGs to acute palliative care) as well as long-term
outpatient care.
Support Loved Ones in Understanding What is Part of The Dying Process
The last few weeks are marked by a decline in general
health, frequent delirium, impaired vigilance, impaired communication,
decreased appetite, the ability to hydrate, and incontinence. These
manifestations must be explained early and repeatedly to relatives to better
understand the situation and enlightened respect for the patient's new rhythm.
The goal is to defend the patient from unnecessary or harmful initiatives to
stimulate physical activity, diet, taking futile treatments or, on the
contrary, stopping opiates in the hope of combating a certain lethargy. . The
assessment of the patient's suffering and needs, as well as the answers to be
given to questions from relatives, are priorities. Basic treatment requires the
adaptation of analgesics and the continuation of parenteral antiepileptics.
There is no consensus on the cure of agonic rales, occurring with the onset of
lasting hypervigilance and the continuation of parenteral steroids.34 Disorders
such as agitation, existential crisis, and epileptic seizures can prove complex
to manage, become refractory, or even super-refractory, particularly to
sedative agents such as midazolam and are an indication for early treatment. In
a specialized palliative medicine unit. 35, 36
Conclusions and Perspectives
The challenges to improve the survival and quality of life
of brain tumor patients and their families remain enormous. The major societal
challenge is to guarantee, in the future, the availability and financing of
long-term care structures.
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