A survey of patient and caregiver experience with malignant pleural mesothelioma

Our plain-English summary of A survey of patient and caregiver experience with malignant pleural mesothelioma, by A. Warby, H.M. Dhillon, S. Kao, et al (Supportive Care in Cancer, 2019).

The study

• Authors: A. Warby, H.M. Dhillon, S. Kao, J.L. Vardy
• Journal: Supportive Care in Cancer
• Published: 2019;27(12):4675-4686
• Cited by: 29 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

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.

In plain English

In 2014, Australian researchers surveyed people with malignant pleural mesothelioma and their caregivers about diagnosis, treatment decisions and support. Responses came from 78 patients and 106 caregivers, recruited through a New South Wales compensation body (icare), two Sydney hospitals, support groups and law firms. Most caregivers (95%) were bereaved. Chemotherapy was discussed most often (95% of patients, 92% of caregivers); 77% of the 74 patients who discussed it received it. Only 69% thought all options were presented. 81% of patients and 60% of caregivers agreed they had made the right chemotherapy decision, while 5% of patients and 16% of caregivers regretted it. Among respondents with complete regret-scale data (59 caregivers and 57 patients), caregivers' mean regret score was 35.2 and patients' was 19.9. Caregivers reported that 85% of the people they cared for were referred to palliative care. Bereaved caregivers said grief counselling (39%) would have helped. The authors concluded that satisfaction with treatment was high, but that communication, information and support for caregivers after a death needed improvement. They noted the response rate was uncertain and respondents may not be representative.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Cross-sectional survey (questionnaires completed online or on paper), developed from earlier qualitative interviews
• Who was studied: 78 people diagnosed with malignant pleural mesothelioma (85% male, median age 69) and 106 caregivers (91% female, 90% caring for a spouse or partner, 95% bereaved), recruited in Australia (mainly New South Wales) from January to September 2014
• Exposure: Not an exposure study. Respondents' self-reported asbestos exposure was recorded. Recruitment included icare, which compensates people with MPM due to occupational exposure.
• Main results:
  • Chemotherapy was discussed with 95% of patients and 92% of caregivers. Of the 74 patients who discussed it, 77% reported receiving it.
  • 69% of respondents believed all treatment options were presented.
  • The chemotherapy decision was described as made by the patient strongly considering the doctor's opinion (44/184, 24%), shared by doctor and patient (34, 18%), or made by the doctor (31, 17%).
  • 63 patients (81%) agreed or strongly agreed they made the right chemotherapy decision and 4 (5%) regretted it. Among caregivers, 64 (60%) agreed or strongly agreed and 17 (16%) regretted the choice.
  • On the Decision Regret Scale (full data for 57 patients and 59 caregivers), caregivers' mean score was 35.2 (SD 28; range 0 to 95) and patients' was 19.9 (SD 19.9; range 0 to 70), p = 0.001.
  • Fewer than one third of patients reported referral to palliative care. Caregivers reported that 90 (85%) of the people they cared for had been referred.
  • 131 of 184 respondents (71%) reported receiving sufficient support. 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 said grief counselling (39/101, 39%) and a post-death consultation with a medical specialist (25%) or palliative care specialist (23%) would have helped.
  • 32 patients (41%) perceived a delay in their diagnosis.
  • Of those who applied for compensation, 171 of 177 (97%) reported being successful, and 6 (3%) had claims pending.
• The authors' conclusion: The authors concluded that satisfaction with treatment was high. They found that participants identified a need for better communication and quality information, discussion of all treatments, end-of-life assistance, and caregiver support after the patient's death.
• Limitations the authors state:
  • The response rate could not be determined because of the mixed recruitment methods. The authors estimated it at about 41% of patients and 45% of caregivers from the icare mail-out.
  • Respondents may not represent all Australian MPM patients or caregivers, and there may be self-selection bias.
  • The sample size was limited because MPM is rare and has a short median survival.
  • Bereaved caregivers' perceptions likely differ from those of caregivers earlier in the illness, which may particularly influence their decision regret.
  • Recall may be less accurate for caregivers bereaved longer ago, and treatments and supports may have changed in the meantime.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Lung cancer, Mesothelioma.

Medical terms in this study, explained in our Lexicon: Pleural Mesothelioma, Prognosis, Chemotherapy, Palliative Care.

Related studies

• Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience — B.H. Taylor, C. Warnock, et al. (2019)
• Managing malignant pleural mesothelioma: experience and perceptions of health care professionals caring for people with mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• Dying of mesothelioma: A qualitative exploration of caregiver experiences — J.T. Lee, D.L. Mittal, et al. (2022)
• Psychological Distress after a Diagnosis of Malignant Mesothelioma in a Group of Patients and Caregivers at the National Priority Contaminated Site of Casale Monferrato — M. Bonafede, A. Granieri, et al. (2020)
• "It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers — S. Girgis, A. Smith, et al. (2019)
• Preliminary validation of a questionnaire assessing psychological distress in caregivers of patients with malignant mesothelioma: Mesothelioma Psychological Distress Tool-Caregivers — M. Bonafede, C. Chiorri, et al. (2022)

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