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Oncology Patient and Cancer Survey to inform best service delivery

A 2020/2021 Summer Studentship research project

Student: Ella Robinson
Supervisors: Professor Bridget Robinson, Dr Kate Gardner
Sponsor: CDHB Oncology Trust

Introduction

The COVID pandemic has profoundly altered the environment we and patients and their loved ones are working in. The ways we interact with patients have changed, their resources have changed very significantly where jobs have been lost and this may still continue to occur, and hence their ability to attend for their care affected. There are also significant psychological effects felt by most of the community to varying degrees. The resource constraints within our DHB are also putting pressure on our service provision. We want to explore what our patient and family community are experiencing and find out what they think would work for them. A sub study will explore video consultations from the patient perspective. A small survey was undertaken in the Service, with the Southern Cancer Network in one week in February 2020, considering phone consultations with 32 patients interviewed and some important issues were raised by those taking part. One of the supervisors was involved in that (RG).

Aim

To assess patient needs and preferences for care, after changes associated with COVID lockdown and ongoing uncertainty Nested substudy: barriers to telehealth and ability of patients to participate in video consultations, supported or unsupported. Ultimate goal: Improve the way Oncology Services deliver care to patients families affected by cancer.

Method

Sequential patients will be sampled who are referred to the Oncology Service, including medical and radiation oncology, who are attending their first specialist assessment, or for radiation planning or treatment, chemotherapy review or treatment, or for follow-up. Patients who attend face to face will be approached in the waiting room, and invited to participate. The student will seek the patient’s and/or carer’s consent and offer them the survey to do in their own time, on paper or electronic, or to go through the questions with them, recording their answers for them. Patients who attend with an interpreter will be invited in the presence of the interpreter and should ideally do the survey while the interpreter is available. These options are provided to optimise the response rate. The most important questions will be first in the survey in case of survey fatigue. The aim is to enable completion within 10 minutes. The student will need to consent patients in both the Oncology Service and the Main Outpatient Building (Orange Building). In addition, patients who attend by phone or telehealth over the same time period will be asked after their appointment whether they are able to participate, and similar will be offered for completing the survey.

Topics to be included: mode of consultation, face-to-face, telephone, video; computer or mobile phone access, and expertise; appointment letters/notification; transport, parking, accommodation, imaging venue and access; obtaining and filling prescriptions, repeats; information about care plan and treatment and medicines; follow-up with Oncology, other specialist or GP; concerns about attending health services due to COVID risk; psycho-social issues, change in personal circumstances precipitated by COVID eg loss of job, finances; issues for them not covered. The questionnaire will be finalised over the next 2 months, and Ethics approval obtained.

The data will be recorded on an excel spreadsheet and analysed using simple tables. The free text sections will be descriptive, and collated into common themes. The results will be shared with the entire Oncology Service and presented in workshop format to explore ways to better meet the patient preferences and situation. The data will also be used to support discussions with managers about future care models.

The subjects will be approached in the first 4 weeks of the student-ship, so survey data collection completed by the Christmas break. The substudy would continue over into January. Statistical support will be sought from Professor Chris Frampton.

Nested study: a smaller number of patients spanning age ranges, gender and technical background, will participate on a simulated video appointment using zoom. The aim is to explore ability to open the invitation, join the conversation, and discuss some aspect of their health care as an example topic. Their feedback will be sought, and problems uncovered recorded. Aspects such as a student observing the consultation by joining the zoom meeting, or another family member who is living distantly, a support nurse or interpreter joining as well will be discussed and issues explored. The substudy will hopefully have an output of guides for staff and patients for using zoom or similar for video consultations.

Ethics approval will be sought from the Oncology Service Low Risk Ethics Review process as well as Maori consultation, although Theona Ireton is a co-supervisor.

Student Researcher Component

The student would administer the survey to patients face to face or by phone, retrieve responses, collate the data using an excel spreadsheet. And prepare summary tables. They will prepare the report, and present it to the Oncology Service with the supervisors. If the findings have value for other parts of New Zealand, we would explore publishing the results. The substudy will hopefully allow the student to create guides for staff and patients for using zoom or similar for video consultations.

Student prerequisites

Medical student or nursing student, good computer literacy an advantage

How to apply

Email bridget.robinson@cdhb.health.nz