Dignity therapy for patients with brain tumours: qualitative reports from patients, caregivers and practitioners.

BACKGROUND: Most individuals with brain tumours experience distress or cognitive impairment during the illness trajectory, potentially causing decreased quality of life, strain on interpersonal relationships and altered sense of self or of the world. Symptoms of brain tumour and treatment can cause increased reliance on others and decreased in sense of dignity. Dignity is an important consideration when caring for patients, as it can influence decisions at end-of-life. Dignity therapy (DT) is a therapeutic intervention that was developed for patients near the end of life. DT encourages the patient to reflect on the life lived, including important roles and sources of pride, resulting in the development of a 'Legacy Document'. DT has been shown to enhance quality of life and dignity, and reduce psychological and existential distress for patients at the end-of-life. There is little literature on the effectiveness of DT, or other quality of life interventions, in brain tumour populations; This paper reports on the feasibility of conducting DT with this population, and presents qualitative data gathered from patients with brain tumours who participated in DT, their caregivers, and their Dignity Therapists. METHODS: Participants were recruited from the Odette Cancer Centre in Toronto. One of five Dignity Therapists conducted the intervention; time data was logged. Immediately after the intervention, patient participants, their caregivers, and Dignity Therapists were sent an open-ended, self-report survey about their experience with DT. Qualitative content analysis was conducted by an impartial reviewer. Average time taken to conduct the intervention was determined. RESULTS: Fifteen out of the 17 recruited participants (88%) completed the intervention; 2 were unable to complete the intervention due to progressing disease. Qualitative data was categorized according to two main areas of interest: Acceptability and Impact. Four participants, 5 caregivers and 4 care providers completed the qualitative surveys. All 4 patient participants reported benefits of DT that related to communication and/or advanced care planning (ACP). Dignity therapists felt that the impact on their patients was positive, and reported satisfaction as a clinician. CONCLUSIONS: The low attrition rate for the intervention suggests that DT is feasible in this population, though the required time to complete DT might be difficult for healthcare practitioners to provide within the recommended timeframe for this therapy. Positive qualitative reports on the effect of DT from patients, caregivers and dignity therapists alike indicate that DT is a promising intervention for this demographic.

Hospitalizations in elderly glioblastoma patients.

BACKGROUND: Elderly glioblastoma (GB) patients are at risk of hospitalizations due to the morbidity of the disease and possible treatment toxicity. METHODS: In this observational cohort study, 255 newly diagnosed GB patients age 65 years and older were included. Survival, emergency room visits and admissions to an acute care hospital were determined. Mean and median total health care costs were calculated. Risk factors for Emergency room visits and acute care hospital admissions were determined. RESULTS: Median overall survival was 6 months. The majority of patients (68%) had at least one visit to the emergency department and 77% had at least one admission to acute care. The mean and median total costs (hospital, ambulatory, physician billing, other health care costs) per patient were $162,479.78 (CAN) and $125,511.00 (CAN), respectively. Treatment with radiation or treatment with radio-chemotherapy was associated with a relative risk (RR) of 2.31 (95% CI: 1.44-3.7; P=0.0005) and 2.19 (95% CI: 1.28-3.74; P=0.004), respectively for emergency department visits as compared to patients who were managed with comfort measures only. Patients with a baseline ECOG 0 had a RR of 1.71 (95% CI: 1.06-2.77; P=0.0289) and patients with baseline ECOG 1 had a RR of 1.49 (0.98-2.26; P=0.0623) for hospital admission as compared to patients with ECOG 4. CONCLUSIONS: A large proportion of elderly GB patients (particularly those with good baseline performance status who underwent active treatment) presented to the emergency department and had at least one admission to acute care.

Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma.

BACKGROUND: Caring for a loved one with a malignant glioma can be a formidable responsibility. The guarded prognosis, side effects of treatments, and changes in brain function, personality and behaviour pose unique challenges in care provision by family members. It is rare that institutions provide educational programs for caregivers. PURPOSE: To evaluate the impact of providing information in an educational program to caregivers of patients diagnosed with a malignant glioma. METHODS: A structured educational program for caregivers of brain tumour patients was developed based upon multidisciplinary expert opinion and caregiver feedback. Twenty-four caregiver participants were enrolled in the program. Knowledge was assessed before, immediately following, and four to six weeks following the program. Open-ended questions were used to explore the caregivers' experiences, as well as additional benefits derived from the program. RESULTS: Knowledge scores on testing immediately after the program and four to six weeks following the program were statistically significantly improved from baseline testing, although there was a decline in scores four to six weeks after the program. These findings demonstrate effective knowledge transfer (recall of the information) immediately after the education program and four to six weeks later. Specific qualitative and quantitative data serve as a basis for understanding caregivers' needs and experiences.