Cancer patient’s perceptions and understanding of immunotherapy

• Research type

  Research Study

• Full title

  Exploring perceptions and understanding of immunotherapy amongst cancer patients in an experimental medicine setting

• IRAS ID

  257919

• Contact name

  Fiona Thistlethwaite

• Contact email

  fiona.thistlethwaite@christie.nhs.uk

• Sponsor organisation

  University of Manchester

• Duration of Study in the UK

  0 years, 3 months, 8 days

• Research summary

  Research Summary
  This mixed methodology study will explore patient perceptions and understanding of immunotherapy in an Experimental Medicine setting. Treatments for cancer patients have evolved significantly in the past decade. Immunotherapy in particular has developed as a new standard of care for a significant number of patients. These significant developments in treatments for cancer have brought with them a surge in media attention, with several high profile immunotherapy treatments featuring on national news programmes, in newspapers and on the internet. This means that patients may be exposed to information about immunotherapy, but without detailed and accurate data to accompany it. These are complex treatments which are suitable and effective for a proportion of patients, however; their utilisation still has major limitations. Therefore, understanding patient’s knowledge and perceptions around these treatments is essential.

  The study will engage with a sample of patients attending clinics within the Experimental Cancer Medicine Team at The Christie NHS Foundation Trust as new patients. The overall sample will be approximately 30 patients, depending on the rate of recruitment. Participants will be asked to complete a questionnaire, which will provide insights into immunotherapy from the perspective of patients engaging with Experimental Medicine at The Christie. The questionnaire will also be used to help to recruit a sub-sample of approximately 10 patients to take part in semi-structured interviews, where these same themes will be explored in more detail. This study also aims to understand how patients engage with different types of sources of information on immunotherapy.

  Summary of Results
  The PINPOINT study was an educational project completed as part of a Masters in Research (MRes) Experimental Medicine course at The University of Manchester. The study was sponsored by The University of Manchester, and the research was carried out by Leanna Goodwin, a student completing the Masters in Research (MRes) Experimental Medicine course. The study took place at The Christie NHS Foundation Trust between 27/08/2019 and 25/09/2020.

  Primary study objectives:
  Determining the level of patient understanding of immunotherapy Examining patient perceptions of immunotherapy

  Secondary study objectives:
  To gain understanding on how patients engage with different types of sources of information on immunotherapy

  The aims of the PINPOINT study were to learn more about cancer patients’ perceptions and understanding of immunotherapy. As a newer form of treatment for cancer, certain high profile types of immunotherapy treatments have received significant media attention, featuring on national news programmes, and in reports in newspapers and on the internet. This means that cancer patients may be exposed to information about immunotherapy, but without detailed and accurate data to go with it. Therefore, understanding what patient’s knowledge and views are on this type of treatment is important.

  The study was designed to take place over two stages, starting with a paper questionnaire to be completed by a group of 30 cancer patients who were attending appointments with the Experimental Cancer Medicine Team at The Christie NHS Foundation Trust. The second stage was then intended to involve completing interviews with 10 patients. These two stages were chosen so that the questionnaire could provide some initial information on what these patients understood about immunotherapy, and what their perceptions were. This could then be explored in more detail in the patient interviews. However, there were unforeseen delays in starting the research, and so only the first stage of data collection has taken place, with 28 patients having completed the paper questionnaire.

  The findings of the PINPOINT study are summarised below:

  Understanding of immunotherapy
  Of the 28 patients who participated in the study and completed the questionnaire, 68% had come across the word ‘immunotherapy’ before. The questionnaire also asked the participants for three words that come to mind when they thought of the word ‘immunotherapy’. The most common words chosen were ‘immune system’, words related to this such as ‘immunity’ were also commonly chosen. This shows that the participants most strongly associated immunotherapy with the immune system. Smaller numbers of participants chose words or phrases which showed comparison between immunotherapy and other types of treatments, such as ‘chemotherapy’ and ‘better than chemo’. Several of the words chosen by participants suggested that they had positive associations with immunotherapy, for example ‘strengthening’, ‘self-healing’, ‘hope’ and ‘cure’.

  The questionnaire also asked participants to rate their understanding of immunotherapy by asking how strongly they agree with the statement: “I feel that I understand how immunotherapy is used to treat cancer”. 21% of participants agreed with the statement, with 7% giving strong agreement in comparison to 14% agreement.

  Perceptions of immunotherapy
  The questionnaire also asked participants to respond to a series of statements related to immunotherapy with their level of agreement with these statements. The strongest levels of agreement (where participants stated that they strongly agree / agree) were found for the statement: "I would find it easy to find information on immunotherapy" at 50%. Participants were least likely to agree with statements which related to more specific aspects of immunotherapy. A majority (61%) stated that they didn’t know if immunotherapy is a good treatment option for their disease type. When responding to a statement comparing the potential for immunotherapy to work for their type of cancer in comparison to other standard of care treatments, 68% stated that they didn’t know.

  When given the opportunity to offer any further comments at the end of the questionnaire, the participant’s responses had several key themes. The first of these themes was a lack of clarity on information about immunotherapy. Another theme was participants being unsure about whether immunotherapy was a suitable treatment option for them. A final theme which was identified from these comments was an interest in learning more about immunotherapy.

  Engagement with different types of sources of information on immunotherapy The majority of participants (68%) stated that they had spent their own time looking for information about cancer treatment. A similar proportion (64%) agreed that they considered themselves well-informed about cancer treatment, with 21% stating that they strongly agreed with this.

  For participants who had previously looked for information on immunotherapy, specialist websites dedicated to providing information on cancer were the first source of information that they had used. For participants who hadn’t ever looked for information on immunotherapy, more general online sources were their most likely first source of information, with responses such as ‘internet search’, or ‘Google’ given by these participants.

  86% of participants stated that medical professionals would be a source that they would use to get information on immunotherapy. Search engines would be a source of information for 68% of participants, and over half (57%) stated that they would use specialist online resources such as the Cancer Research UK website. Aside from online sources, 46% stated that they would use printed materials such as specialist leaflets or booklets which provide information on immunotherapy. This was the offline source of information that the largest percentage of participants agreed that they would use. An extra source of information that participants suggested as a potential source of information on immunotherapy was online cancer patient groups. This wasn’t provided as an answer option to choose from in the questionnaire but was suggested by a participant. The participant pointed out that these online groups may include people who have received immunotherapy treatment.

• REC name

  North West - Preston Research Ethics Committee

• REC reference

  19/NW/0499

• Date of REC Opinion

  15 Aug 2019

• REC opinion

  Further Information Favourable Opinion