A web-based, needs assessment system toenhance supportive carefor people with skin cancer– what is your opinion?
Need for Project
The past decades have seen a steady increase in new cases of skin cancer within the UK. Skin cancer (including melanoma and non-melanoma skin cancer) is now the most common cancer in the UK. Whenskin cancer is found at an early stage, the chance of cure is very high. However, living with and beyond skin cancer can be challenging. People with skin cancer may struggle with fears about the cancer returning, lack of information, depressed mood, changes in body image, or returning to normal. Up to 40% of them may have unmet needs both during and after treatment. If such needs are not met, one may feel overly distressed, delay seeking medical advice, have poor adherence to treatment or may not engage in protective behaviours to reduce the risk for cancer recurrence.
Supporting people with skin cancer means offering care that takes their needs into consideration. However, there is evidence suggesting that clinicians in busy clinical settings often fail to assess patients’ needs and make appropriate and timely referrals. One reason may be that clinicians do not systematically use tools that can help them to identify a patient’s needs, or they simply do not use any tools. Such tools may be questionnaires that ask patients about any needs or concerns they have. Clinicians can use the information that these tools generate to help themto offer care that is tailored to a patient’s needs.
Technology, e.g. web-based systems, can be the perfect means for all these actions to take place. With the population of computer and internet users in the UK rapidly increasing, such systems can reach and support the majority of people with skin cancer, who may need help, regardless of remoteness.Such web-systems make use of questionnaires to collect information about patients’ needs and send it in real-time or on-demand to clinicians at the hospital or in the community. In doing so, clinicians can get more relevant information, and can offer care that is tailored to a person’s needs either in person or over the telephone. In addition, these web-systems can return information and advice in the form of text, images or videos that people with skin cancer can use to improve their skills for self-management. However, no such web-system exists for people with skin cancer. This is the focus of the current project. This project aspires to develop a novel intervention that, together with future work, will widen access to personalised care to meet the needs that people with skin cancer have for support.
Aim of the Project
Our aim is to develop and test a new web-system to allow people who have a diagnosis of skin cancer to report their needs for support, receive personalised care in response to these needs, and also automatically receive information about how to self-manage any concerns or ask help from available services in the community. As part of this project, people with skin cancer will be able to accessthe system via computers, laptops, tablet computers or smartphones to report their needs to clinicians in acute care.
This project will be a pilot study. A pilot study is usually carried out before a main study in order to answer the general question “Can this be done?” In this project, we will aim to answer two research questions.
The first research question for the project is: What do people with skin cancer think that the content of aweb-system to allow assessmentof their needs should be, and how it should look like? In a similar way, what are skin cancer clinicians’ thoughts about the content of such a system?
Our second research question, which will follow development of the application, is: Is use of the electronic application achievable, reasonable, realistic, and of value to people with skin cancer and clinicians involved in their care?
Testing of the Project
This pilot study will take place over two phases.
In Phase 1, we will interview people with skin cancer and clinicians to seek their opinions and advice on the proposed web-system. Together with information from the literature, we will develop the web-system as an online platform.
In Phase 2, we will invite 70 people with skin cancer to take place in a pilot, randomised controlled trial (RCT). A RCT is a study, where participants are allocated by chance alone to one of several clinical interventions. One of these interventions is the standard of comparison or control.We will need to run a pilot RCT to help us make decisions about whether our web-system can be used in clinical practice and whether it is more effective in managing the needs of people with skin cancercompared to usual care.
In our pilot RCT, half of our participants (those in the intervention group) will be given access to the web-system.We will ask them to use the system on three occasions (start of month 1; start of month 2; start of month 3).This is enough time to test the different aspects of the system. The other half of participants (those in the control group) will receive usual care as is standard at their hospital.All of our participants will be recently diagnosed with skin cancer (past 12 months) and required to have access to the internet and, where possible, an email account. People with no internet access/email account will be able to ask for help from family members/friends with internet access so that they can take part in the study.
The web-system will allow those in the intervention group to enter information about their needs, using an online questionnaire. The system will use this information to return appropriate self-management advice and also create an electronic summary (e-report) of the person’s needs. The e-report will be made immediately available for the person to view. A copy of the e-report will automatically be sent to the nurse specialist at the hospital for him/her to view. The nurse specialist will then either arrange an appointment at the hospital (month 1) or telephone the person at home (months 2 and 3) to discuss the e-report and offer advice and support.
At different points in Phase 2, we will ask all our participants to complete brief forms and questionnaires so that we can make comparisons between the intervention and control groups.We will also ask participants in the intervention groupto take part in end-of-study interviews to share their experiences with using the web-systems. The nurse specialists or other clinicians who will be involved in the study will also be asked to participate in similar end-of-study interviews. We will use all this information to conclude whether or not use of the web-system is achievable, acceptable and of value to our participants.
Patient Benefit
On completion, we expect that the project will develop a web-system that will be of value to people with skin cancer as it will:
- Allow for any needs for support and care to be identified and managed as early as possible,
- Increase one’s knowledge of the range of strategies that can be used (and how they can be used) to manage their needs and concerns,
- Boost one’s self-confidence in dealing with concerns,
- Possibly lead to less distress and better well-being as needs and concerns will be managed in a timely manner.
The project will also show if the web-system can be used in routine clinical practice, what changes may be needed to improve it so that it serves people with skin cancer better, and in what way it can contribute to the quality of service provided by the NHS to people with skin cancer. Finally, the study will allow us to understand what changes might be required in delivering the intervention before planning a larger RCT with more participants. Together with future work, this project could lead to development of a cost-effective web intervention that could become part of standard everyday clinical practice to tackle the unmet needs of people with skin cancer and offer them the support they deserve.