1. Patient experience of Extended Pleurectomy Decortication (EPD) and chemotherapy in the MARS 2 feasibility trial: findings from a longitudinal qualitative sub-study
Clare Warnock1, Karen Lord2, Peter Allmark3, Liz Darlison2, Angela Tod4
1Sheffield Teaching Hospitals NHS FT, 2 University Hospitals of Leicester NHS Trust and Mesothelioma UK, 3 Sheffield Hallam University, 4 University of Sheffield
Background
Little robust, evidence exists regarding patient experience of new interventions for mesothelioma (Cao et al 2014, The et al 2011). The Mesothelioma and Radical Surgery 2 (MARS 2) Trial, will evaluate clinical and cost-effectiveness of Extended Pleurectomy Decortication (EPD) plus chemotherapy in mesothelioma versus chemotherapy alone. This poster presents findings from a longitudinal qualitative patient experience sub-study within MARS 2 feasibility. It investigated patient experience of the study interventions.
Method
An in-depth longitudinal qualitative study with interviews of 15 participants (6 chemotherapy, 9 surgery + chemotherapy). Interviews were conducted prior to randomisation, and at 6 and 12 months post randomisation. Surgery patients had an additional post-operative interview. A total of 41 interviews were conducted between August 2015 and March Framework analysis methods were used (Ritchie and Lewis, 2014).
Findings
Participant’s expectations of treatments (chemotherapy and surgery) did not always match the reality of their experience. Both interventions had profound impacts on participants, with many being more severe than anticipated.
Chemotherapy patients experienced nausea, fatigue, mouth ulcers, anorexia, taste changes and constipation. Whilst surgery patients suffered problems with pain, breathing, fatigue and, in addition, anxiety and discomfort due to the drains, especially if left in situ following discharge.
Self-management and coping strategies identified included pacing and testing things out, managing expectations, ‘playing things down’, gaining value from being involved in a trial, being positive and adaptable goal setting. Factors from healthcare staff that facilitated symptom management, recovery and coping included continuity of care, trust in the staff and services and clarity of information.
Treatment effects
Surgery: prolonged chest drainage, pain, breathlessness, constipation (exacerbated by analgesia), fatigue, difficulty sleeping, numbness at operation site
“Every time you done something like cough, you’d get this pain….where the tube was, oh it was murder”
“getting out of breath…I could walk anywhere …before I went in, I could do all these things, but now I can’t do them. It’s frustrating.”
“I've been in pain, I've cried over it and stuff like that but at the end of the day it's just a bit of pain.”
Challenges
Facilitators
Access to support
Being prepared
Coping strategies
Care interventions
Fragmented care
Information overload
Uncertainty
Treatment effects
Treatment effects
Chemotherapy : nausea and vomiting, anorexia, constipation, anorexia, taste changes, fatigue, infection, sore mouth
“I go downhill for 7 to 10 days then pick up and you just feel as though you got back to where you started when it’s time for another dose”
“the sickness, the tinny taste in your mouth, and how tired it makes you. I mean, the first day after the chemo I just felt absolutely knackered.”
“I couldn’t eat, I couldn’t drink and I had to go into hospital for nine days …….I was very low and dehydrated.”
COPING STRATEGIES
Being strong
“I think any surgery is going to be difficult, you just have to set yourself to that, man up a bit”
Value in the trial
“If I can help in some small way to find a cure then it won’t have been in vain”
Being positive
“I know the reality, but I believe you have to have a positive outlook”
Adaptive goals
“I can’t go to the gym no more but I can carry on walking and doing what I can do”
Discussion/ Conclusion
This is the first study that follows the progress of people with mesothelioma through a trial evaluating a radical treatment (EPD plus chemotherapy) against standard treatment (chemotherapy alone). It therefore provides valuable insight into the nature and extent of the impact of both treatments. Related patient care needs are identified to inform future care provision.
References:
Cao C, Tian D, Park J, Allan J, Pataky KA, Yan TD (2014) A systematic review and meta-analysis of surgical treatments for malignant pleural mesothelioma Lung Cancer 83 (2014) 240–245
Richie, J and Lewis J (2014) Qualitative research practice: a guide for social science students and researchers. 2nd Edition. London: Sage.
Teh E, Fiorentino F, Tan C, Treasure T. (2011) A systematic review of lung-sparing extirpative surgery for pleural mesothelioma. J R Soc Med, 104, pp. 69–80
Supported by funding from
John Pickering and Partners Charitable Trust