None listed
Conditions
Brief summary
The purpose of this study is to test a new screening tool to see if this tool helps the hospital meet patient’s supportive care needs. Supportive care includes physical, financial, emotional, family and practical support. Who is it for? You may be eligible for this study if you are aged 16 or over, you have a diagnosis of blood cancer and are receiving treatment. You may also be eligible for a part of the study if you have received treatment for a blood cancer in the past. Study details Participants in this study will be divided into two groups, depending on whether they are currently having treatment (called the prospective group), or received treatment in the past (the retrospective group). Both groups will complete screening tools, which involve a questionnaire. The retrospective group will complete a paper questionnaire and return by mail. The prospective group will complete the questionnaire at each appointment in a 12-month period. In addition to the questionnaire(s), all participants will also complete a satisfaction survey. It is hoped this research will demonstrate the usefulness of this screening process, and enable the needs of patients to be responded to more effectively.
Interventions
The PROMs trial will assess the adequacy, feasibility and acceptability of an electronic screening tool (electronic PROMs) in addressing the supportive care needs of blood cancer patients). We aim to facilitate a timely response to supportive care needs and increase appropriate allied health referrals, by identifying and acting on clinically significant responses to screening tools. The PROMs trial has both prospective and retrospective (historical) arms.
Prospective arm:
The electronic PROMs c
The PROMs trial will assess the adequacy, feasibility and acceptability of an electronic screening tool (electronic PROMs) in addressing the supportive care needs of blood cancer patients). We aim to facilitate a timely response to supportive care needs and increase appropriate allied health referrals, by identifying and acting on clinically significant responses to screening tools. The PROMs trial has both prospective and retrospective (historical) arms. Prospective arm: The electronic PROMs comprises two existing supportive care screening tools: the Malnutrition Screening Tool and the National Comprehensive Cancer Network's Distress Thermometer and Problem List, with additional questions regarding exercise. Overall, participant distress, supportive care needs, nutritional status and physical activity will be assessed. These screening tools have been synthesised into the electronic PROMs through the secure survey database Google Forms. Participants will be provided with pre-programmed touchscreens to complete the electronic PROMs during each visit to the outpatient haematology centre, with the view that it is completed at every scheduled appointment over a 6-month period. This will vary depending on the frequency of participants treatments and may be from weekly to 4 weekly. The electronic PROMs will take approximately 2-5 minutes to complete. In addition, participants will be provided with a URL to access and complete the electronic PROMs at home if needed. This will not be scheduled or expected, but can be used by participants if they experience a change in symptoms or needs and will be on an ad hoc basis only. Surveys completed from home will be identified by a direct question on the PROMs. Responses to the electronic PROMs will be viewed and actioned within 3 days. Participants who provide pre-determined 'clinically significant' responses will be automatically flagged on the survey database. An appointment will be subsequently scheduled for these participants with the nurse project coordinator, a specialised haematology nurse with many years' experience. The purpose of this appointment is to discuss supportive care needs and refer participants to appropriate allied health services. The number and pattern of referrals to allied health services (specifically psychology, dietetics, social work and exercise physiology) will be recorded by the nurse project coordinator. Participants adherence to the intervention will be monitored in real time - trial participants will be flagged in advance of their attendance for treatment to ensure completion of survey. Study personnel are notified immediately of completion of surveys and so with the support for administrative staff can ensure same day completion. Reasons for failure to complete survey will be captured to inform feasibility of PROMs. Participants will also complete a once-off electronic 'prospective participant satisfaction survey' (PPSS), designed to assess the acceptability of the electronic PROMs. This is to be completed at the end of the 12-month study period, via touchscreens provided at the outpatient centre. Each participant in this arm will receive the same interventions (electronic PROMs and PPSS). Participants may receive different allied health referrals, depending on their responses to the electronic PROMs.
Sponsors
Cabrini Hospital
Study design
Allocation
Non-randomised trial
Intervention model
Other
Primary purpose
Treatment
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Prospective arm: 1. Participants with a diagnosis of haematological malignancy (including, but not limited to, myeloma, lymphoma, leukaemia, myelodysplastic and myeloproliferative syndromes), attending the study centre 2. In receipt of treatment for their haematological malignancy during the twelve-month study period (including, but not limited to, parenteral chemotherapy and immunotherapy, oral chemotherapy/disease directed therapy or regular blood product transfusions) Retrospective arm: 1. Participants with a diagnosis of haematological malignancy (including, but not limited to, myeloma, lymphoma, leukaemia, myelodysplastic and myeloproliferative syndromes) 2. Attended the study centre between 28/05/19 - 27/05/2020 for treatment of their haematological malignancy
Exclusion criteria
For both prospective and retrospective arms, patients who are unable to speak or write the English language are not eligible for participation in this study.
Outcome results
None listed