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Support Care Cancer. 2019 Apr 3. doi: 10.1007/s00520-019-04760-x. [Epub ahead of print]

A survey of patient and caregiver experience with malignant pleural mesothelioma.

Warby A1,2, Dhillon HM1, Kao S2,3,4, Vardy JL5,6,7,8.

Author information

1
Centre for Medical Psychology and Evidence-Based Decision-Making, The University of Sydney, Sydney, NSW, 2006, Australia.
2
Asbestos Diseases Research Institute, Bernie Banton Centre, Gate 3, Hospital Rd., Concord, NSW, 2139, Australia.
3
Chris O'Brien Lifehouse, 119-143 Missenden Rd, Camperdown, NSW, 2050, Australia.
4
Sydney Medical School, The University of Sydney, Sydney, NSW, 2006, Australia.
5
Centre for Medical Psychology and Evidence-Based Decision-Making, The University of Sydney, Sydney, NSW, 2006, Australia. janette.vardy@sydney.edu.au.
6
Asbestos Diseases Research Institute, Bernie Banton Centre, Gate 3, Hospital Rd., Concord, NSW, 2139, Australia. janette.vardy@sydney.edu.au.
7
Sydney Medical School, The University of Sydney, Sydney, NSW, 2006, Australia. janette.vardy@sydney.edu.au.
8
Concord Cancer Centre, Concord Repatriation General Hospital, Hospital Rd., Concord, NSW, 2139, Australia. janette.vardy@sydney.edu.au.

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.

KEYWORDS:

Caregivers; Chemotherapy; Decision-making; Malignant pleural mesothelioma; Patient experience

PMID:
30944991
DOI:
10.1007/s00520-019-04760-x

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