A survey of patient and caregiver experience with malignant pleural mesothelioma.
Support Care Cancer
; 27(12): 4675-4686, 2019 Dec.
Article
em En
| MEDLINE
| ID: mdl-30944991
ABSTRACT
BACKGROUND:
Malignant pleural mesothelioma (MPM) is a rare cancer with poor prognosis. As there is little information on the lived experience of MPM, our aim was to document the experience of MPM patients and their caregivers.METHODS:
Surveys for MPM patients and caregivers were developed from previous interviews with patients, caregivers, and health professionals, about treatments and decision-making. Participants were recruited from two hospitals, government compensation body, and support groups.RESULTS:
Survey responses were received from 78 MPM patients and 106 caregivers from January to September 2014. PATIENTS 85% male, median age 69 years, median time since diagnosis 15 months. Caregivers median age 68, 91% female, 90% spouse of MPM patient, 95% bereaved. Most participants felt informed about treatment options but only 69% thought all treatment options were discussed. Chemotherapy was discussed most frequently (92-95%); ~80% had sufficient information for decision-making. Decision regarding chemotherapy was made by patient considering doctor's opinion (24%), doctor and patient equally (18%), and doctor (17%). Participants 'agreed'/'strongly agreed' that they made the right decision about chemotherapy (patients 81%, caregivers 60%), but 5% and 16%, respectively, regretted the decision. Most participants received 'sufficient' support (71%). A quarter reported seeing cancer nurse specialists. Palliative care referral 31% patients, 85% caregivers. Caregivers would have liked to talk to someone by themselves (41%), more time with doctors (30%), psychological support (29%), and clearer information (31%). Bereaved caregivers requested grief counselling (39%) and post-death consultation with specialists (23-25%).CONCLUSIONS:
Satisfaction with treatment was high, but participants identified need for improved communication and quality information, discussion about all treatments, end-of-life assistance, and caregiver support after the patient's death.Palavras-chave
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Base de dados:
MEDLINE
Assunto principal:
Cuidadores
/
Pessoal de Saúde
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Neoplasias Pulmonares
/
Mesotelioma
Idioma:
En
Ano de publicação:
2019
Tipo de documento:
Article