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Managing malignant pleural mesothelioma: experience and perceptions of health care professionals caring for people with mesothelioma

  • Anne Warby
  • Haryana M. Dhillon
  • Steven Kao
  • Janette L. VardyEmail author
Original Article

Abstract

Background

Malignant pleural mesothelioma (MPM) has a poor prognosis and heavy symptom burden. Here, we investigate health professionals’ attitudes to management and decision-making in people with MPM.

Methods

Survey questions were based on previous interviews with health professionals, MPM patients, and caregivers. Surveys were sent to specialist doctors and nurses who treat MPM.

Results

Surveys were completed by 107 doctors and 19 nurses from January–September 2014. Most doctors were respiratory physicians (50%) or medical oncologists (35%). Overall, 90% of doctors estimated > 10% of eligible MPM patients did not receive chemotherapy; 43% estimated the rate was > 20%. Doctors believed clinical barriers to chemotherapy were clinician nihilism (70%); non-referral to medical oncology (49%); and lack of specialists in rural/regional areas (44%). Nurses perceived barriers as follows: delayed diagnosis (74%); non-referral to medical oncology (63%); lack of clinician knowledge (58%). Patient-related barriers were negative perception of chemotherapy (83%) and belief survival benefit not worthwhile (63%). Doctors’ preference in decision-making was for the patient to make the decision while strongly considering the doctor’s opinion (33%); equally with the doctor (29%); and using knowledge gained (23%). Nurses described their roles as providing patient support (100%); information (95%); intermediary (74%); and link to palliative care (74%). Overall, 95% believed they enabled better resource allocation and provided patients with holistic care (95%); clearer communication (89%); more time (89%); additional information (89%); timely referrals (89%).

Conclusions

Caring for patients with MPM is challenging and complex. Health care professionals believe under-utilisation of chemotherapy is occurring, primarily due to clinician nihilism and lack of medical oncology referral.

Keywords

Malignant pleural mesothelioma Health care professionals Chemotherapy Decision-making 

Notes

Acknowledgments

We would like to acknowledge the assistance provided by the following organisations with recruitment to the study: Thoracic Society of Australia & New Zealand; the Royal Australian and New Zealand College of Radiologists; Australasian Lung Cancer Trials Group; Australian and New Zealand Lung Cancer Nurses Forum; the Australian & New Zealand Society of Palliative Medicine Inc.; Palliative Care Nurses Australia; Medical Oncology Group of Australia; Ms. Judy Rafferty (Lung Foundation Australia).

Funding

The study which is the subject of this manuscript was funded by a grant from the Dust Diseases Board NSW (now known as icare Dust Diseases Care).

Compliance with ethical standards

Conflict of interest

Drs Vardy, Dhillon, and Kao report grants from icare Dust Diseases Care for the conduct of the study which is the basis of the submitted work. Dr. Kao reports personal fees to his institution from MSD, Roche, AstraZeneca, Pfizer, and BMS, outside the submitted work. Dr. Dhillon reports honoraria paid to her institution from MSD outside the submitted work. The authors have full control of all primary data and agree to allow the journal to review the data if requested.

Supplementary material

520_2019_4648_MOESM1_ESM.pdf (135 kb)
ESM 1 (PDF 134 kb)
520_2019_4648_MOESM2_ESM.docx (15 kb)
ESM 2 (DOCX 15 kb)
520_2019_4648_MOESM3_ESM.docx (14 kb)
ESM 3 (DOCX 14 kb)

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Centre for Medical Psychology and Evidence-Based Decision-MakingThe University of SydneySydneyAustralia
  2. 2.Asbestos Diseases Research Institute, Bernie Banton CentreConcordAustralia
  3. 3.Chris O’Brien LifehouseCamperdownAustralia
  4. 4.Sydney Medical SchoolThe University of SydneySydneyAustralia
  5. 5.Concord Cancer Centre, Concord Repatriation General HospitalConcordAustralia

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