The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care

Prusak, Agata; Zwan, Jan Maarten van der; Aarts, Mieke J.; Arber, Anne; Cornelissen, Robin; Burgers, Sjaak; Duijts, Saskia F. A.

doi:10.1111/ecc.13498

Cited by 12 publications

(12 citation statements)

References 17 publications

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“…Specialist psychological support had rarely been accessed by patients or their carers. This reflects findings from other studies,9 26 and suggests improved access to tailored emotional support for patients and carers is important for long-term survivors.…”

Section: Discussionsupporting

confidence: 83%

Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers

2022

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BackgroundMalignant pleural mesothelioma (MPM) is characterised by poor prognosis and limited treatment options. However, a minority of patients can survive well beyond these bleak estimates. Little is known about the specific experiences and needs of long-term survivors and families.Study purposeThe study aimed to gain in-depth understanding of the experiences of patients diagnosed with MPM 3 or more years, along with their main carer, and to determine the care and support needs of this group.Participants and settingPeople diagnosed with MPM 3 or more years were recruited via asbestos and mesothelioma social media and support groups. Potential participants were asked to identify someone who acted as their main carer.MethodThe study employed a cross-sectional qualitative interview design. A topic guide aided a conversational interview style, conducted remotely and recorded. Patient and carer pairs were interviewed jointly when possible, but were given an option for separate interviews if preferred. Fifteen patients, with 14 identifying a main carer, consented to participation.AnalysisRecorded interviews were transcribed verbatim, and then anonymised by the interviewer. Framework analysis was used to analyse the data iteratively and to develop final themes.FindingsThree themes were developed. Participants ‘Living beyond expectations’ remained acutely aware that MPM was incurable, but developed a range of coping strategies. Periods of disease stability were punctuated with crises of progression or treatment ending, straining coping. ‘Accessing treatment’ was important for patients and carers, despite the associated challenges. They were aware options were limited, and actively sought new treatments and clinical trials. ‘Support needs’ were met by healthcare professionals, voluntary groups and social media networks.ConclusionsManaging patients via regional MPM multidisciplinary teams, facilitating equal access to treatment and trials, could reduce patient and carer burden. Greater awareness and support around crisis points for this group could improve care.

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Section: Discussionsupporting

confidence: 83%

Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers

2022

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“…According to patients, psychological information and support should be offered from the initial diagnosis onwards and should include both themselves and their close relatives. 48 Patients in our study considered peer support a valuable type of psychosocial support, and previous research has shown it could improve patients' psychological empowerment (e.g. increased selfefficacy and positive coping) 49 and enable social reintegration 50 and return to work.…”

Section: Discussionmentioning

confidence: 79%

“…This need includes psychological support, and also the previously mentioned work‐related information and support. According to patients, psychological information and support should be offered from the initial diagnosis onwards and should include both themselves and their close relatives 48 . Patients in our study considered peer support a valuable type of psychosocial support, and previous research has shown it could improve patients’ psychological empowerment (e.g.…”

Section: Discussionmentioning

confidence: 95%

Experiences of resuming life after immunotherapy and associated survivorship care needs: a qualitative study among patients with metastatic melanoma

Kamminga

Veldt

Joosen

et al. 2022

British Journal of Dermatology

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Background Immune checkpoint inhibitors (ICIs) have significantly improved the overall survival of patients with metastatic melanoma. It is unclear how the growing group of metastatic melanoma survivors resume their lives after treatment, and which needs they have regarding survivorship care (SSC). Objectives To gain an in-depth understanding of metastatic melanoma survivors' experiences of resuming life after ICIs and their associated SSC needs. Methods A qualitative study was conducted among 20 patients with metastatic melanoma in whom ICIs had been discontinued after ongoing tumour response. One focus group (n = 9) was held, which was complemented by 11 individual interviews. Purposive sampling was used to select a variable sample in terms of sex, age, time since discontinuation of ICIs, and perceived impact of the disease. A topic guide was used to structure the (group) interviews, which were transcribed verbatim and analysed in a thematic content analysis, using several phases of coding. Results In resuming life after ICIs, the prognosis switch often caused mixed feelings among patients, mainly because of the uncertainty about the future. Demands and expectations from self and others, persistent complaints and new problems in different life domains often make it challenging to proceed with life as it was prior to metastatic cancer. Patients indicated they needed to find a new balance, which included learning to cope with uncertainty and a changed perspective on life and close relationships. In terms of SSC needs, patients particularly stressed the need for more tailored patient information, available at one location. In addition, they emphasized the need to know who to turn to in case of questions and indicated the need for psychosocial support, also for their close relatives. Conclusions Metastatic melanoma survivors face various challenges in resuming life after ICIs and are left with several unmet SSC needs. Efforts should be focused on offering psychosocial supportive care in addition to medical care, from diagnosis onwards, taking into account the patient's close relatives. A single point of contact and personalized survivorship care plan (SCP) could be of added value in guiding them through the patient journey, which is, given its multidisciplinary nature, particularly important in melanoma care.

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“…It was striking that some bereaved family members thought that their input into PPI activities is less valuable than that of people diagnosed and living with mesothelioma because they are not the direct beneficiaries of research. This may indicate lack of awareness that mesothelioma research addresses family members’ (or carers’) needs, too [ 37 ], on reflection, something that the research team could have emphasised.…”

Section: Discussionmentioning

confidence: 99%

Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations

et al. 2023

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Background Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to asbestos, where PPI is poorly documented. We undertook to explore how PPI could be facilitated in mesothelioma research. Methods An online survey with mesothelioma researchers (n = 23) assessed the perceived benefits and challenges of PPI in mesothelioma. Six online workshops and thirteen in-depth interviews with patients and the public explored their views on how PPI could be increased in mesothelioma and their motivations to become PPI representatives in the future. The survey data were analysed using descriptive statistics and the interviews, using Thematic Analysis. Results In the survey, 26% (n = 6) of the researchers did not include PPI in their research, while 74% (n = 17) did, finding it most beneficial at the stages of applying for funding and dissemination. The main perceived benefits of PPI were clarifying the research question and outcome measures, making research more credible and relevant to patients’ needs, and increasing its impact. The main perceived challenges to PPI were the general poor prognosis in mesothelioma, and funding timescales which hindered timely recruitment of PPI representatives. The analysis of the interviews with the patients and public revealed three main themes: “Motivations to become a PPI representative in the future”, “Understanding the nature of PPI during the project”, and “Perceived challenges to PPI in mesothelioma”. Altruism and the need for hope were the main reasons to wish to become involved in PPI in the future. For many participants, the project proved to be a journey of understanding the nature of PPI, a concept that was not easy to grasp from the start. The participants perceived certain barriers to PPI such as high symptom burden in mesothelioma, the abstract concept of PPI, and the use of scientific language. Conclusions The present research provides a detailed picture of the benefits and challenges of PPI in mesothelioma. We recommend long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research.

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The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care

Cited by 12 publications

References 17 publications

Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers

Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers

Experiences of resuming life after immunotherapy and associated survivorship care needs: a qualitative study among patients with metastatic melanoma

Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations

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