CLINICAL STUDY–PATIENT STUDY The burden of brain tumor: a single-institution study on psychological patterns in caregivers Claudia Yvonne Finocchiaro • Alessandra Petruzzi • Elena Lamperti • Andrea Botturi • Paola Gaviani • Antonio Silvani • Lucio Sarno • Andrea Salmaggi Received: 12 July 2011 / Accepted: 17 September 2011 / Published online: 4 October 2011 Ó Springer Science+Business Media, LLC. 2011 Abstract Quality of life and well-being in caregivers are usually partly neglected since all attention is focused on patients and the way they react to the illness. Carers also usually neglect their own needs, especially when the illness of the patient is as complex as a brain tumor. The aim of this study is to investigate how caregivers deal with a diagnosis of brain tumor in their relatives and how they manage their quality of life and psychosocial well-being. One hundred primary caregivers of patients with brain tumors were interviewed and were asked to fill in self– administered questionnaires detecting multidimensional levels of quality of life, anxiety, depression, and psycho- social reaction to the patient’s illness. Data were related with some functional and psychosocial information col- lected about the patient’s disease. Caregivers try to react to the illness of their relatives by mobilizing their physical reaction and growing their self-esteem, but they live with a clinically significant impairment of their quality of life, and experience a deep level of anxiety and depression. The caregivers’ burden appears mainly in their ability to pro- vide care and in financial strain. The length of disease and the functional status of patients significantly influence caregivers’ psychosocial well-being. Despite the appear- ance they want to show their affected relatives, caregivers suffer from deep limitation in their quality of life. The relevance of caregivers’ burden suggests the importance of psychological support to improve reaction to the illness. Keywords Anxiety Á Brain tumors Á Caregivers Á Depression Á Quality of life Introduction The caregiver, defined as someone who helps a person in coping with a disease, attends to tasks that range from physical help in normal activities of daily living (e.g., eating, dressing, bathing, etc.) [1] to managing finances and attending scheduled follow-up visits and examinations. Sherwood et al. suggested that caregivers of brain tumor patients represent a unique subset of the cancer caregiver population. Specifically, these individuals provide care to a patient, often a family member, with a potentially short terminal disease trajectory and that may experience severe functional, cognitive, and psychological sequelae [2, 3], and often provide their care and assistance without pay. Symptoms frequent in patients with brain tumors include seizures, fatigue, pain, cognitive decline, weakness, loss of muscle and sphincter control, and immunodefi- ciencies [4]. Psychological symptoms may include anxiety [5], depression [6], and fear of dying [7]. Patients may be unable to return to work after completion of treatments [8]. For some patients, 24-h supervision may become necessary [5, 9, 10]. These physical and neuropsychological symptoms and signs are not only detrimental to patients’ quality of life but also affect carers, who themselves report high levels of distress [3, 11]. Collectively, caring for an individual with such diverse and demanding symptoms may place ever-increasing and unmanageable demands on caregivers, leading to poten- tially unfavorable outcomes such as depression or reduced immune response [12]. C. Y. Finocchiaro (&) Á A. Petruzzi Á E. Lamperti Á A. Botturi Á P. Gaviani Á A. Silvani Á A. Salmaggi Department of Neurooncology, Fondazione I.R.C.C.S. Istituto Neurologico C. Besta, Via Celoria, 11, 20133 Milan, Italy e-mail: claudia.finocchiaro@gmail.com C. Y. Finocchiaro Á L. Sarno Vita-Salute San Raffaele University, Milan, Italy 123 J Neurooncol (2012) 107:175–181 DOI 10.1007/s11060-011-0726-y