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ITPSA Patient Perception Study 2024 Summary
-
by
mervyn
ITPSA Patient Perception Study 2024 Summary with some comparison looking back at our previous 2020/2022 Perception Survey results and any significant changes in the data
Cohort figures in 2020 were 194 patients, 2022 – 333, and in 2024 134.
A total of 661 patients took part in these surveys over the last 4 years.
So, if we start by looking at the positive points that stand out from this year’s survey:
- 92% of respondents were patients and 6.2% parents, 1.8% carers
- 96% found all ITP staff friendly and attentive
- 94% of patients were very happy with the time allotted for appointments
- 95% felt all their questions were answered by their HCP, in spite of there being a number of “unknown “areas of ITP (individual responses to drugs, causes of ITP etc)
- 84% were happy with the clinical management of their ITP
- 89% were happy with the instructions they received for their medication
- 85% felt their quality of care had met their expectations
- At platelet counts of 100 plus fatigue appeared to drop by some 2 thirds
- 92% had no challenges to obtaining TPO medication (Eltrombopag/Romiplostim and Avatrombopag)
- 98% were able to revert to their initial TPO if the 2nd one did not have a response without an IFR being required
- No IFR (Individual Funding Request) requests were refused
- 71% were aware of their treatment plan, the remainder were unaware of theirs
- 62% believed they had no conflicting advice from haematologists
- 46% believed their standard of care was first class
- Patients preferred an ITP Centre as they perceived more specialist knowledge to be available
- 65% felt the side effects of their medication was explained to them
If we look at areas where we would hope to see improvement:
- Only 22% of respondents were aware of a protocol from their hospital to follow, in respect of emergency situations and contact numbers
- 73% had cited their mental health as being affected by ITP, but had received no support from their HCP
- 47% only, had an ITP Specialist nurse in their clinic/hospital, although this figure has risen from 26% in 2020, so a part positive.
- 66% of GP’s had no knowledge of ITP symptoms at first appointment for advice
| 2020 | 2022 | 2024 | |||
| Yes | 44% | 39% | 34% | ||
| No | 56% | 61% | 66% |
- 77% were not aware of any clinical trials
- 35% of patients had heard of ITPSA via hospital/Clinic, none via their GP
- 29% of patients were unaware of their care plan, given the initiatives to move to “shared decision making” between patient and clinician this number ideally should be much higher
- 35% did not believe they had the potential side effects of the medication pointed out to them, again in the interest of “shared decision making”, preferably an area for improvement
Clearly these areas where improvement is required are very important, not only from a clinical perspective, but also safeguarding the patient’s situation – protocols in emergencies, GP’s knowledge at first appointments specifically have to be worked on and improved.
Mental health support is pivotal in improving the patient quality of life and arguably their response to their treatment plans, it is already acknowledged that there is a real necessity for this to be available within Centres of Excellence.
Specialist Nurse numbers are improving considerably – our 2020 showed only 26% and now we are at 47%, so a vast increase in numbers in a relatively short time frame.
How do this year’s results compare with the last two survey?
- 3% decline in the use of steroids
- IVig use the same at 49%
- Rituximab – 41% in 2022, 17% 2022 and at 29% this year
- Eltrombopag – 2020 30%, 42% 2022 and 2024 43%
- Romiplostim figures were constant
- Avatrombopag (first approved by NICE for UK use 2022) 3% 2022, now standing at 29%
| 2020 | 2022 | 2024 | ||||
| Steroids | 87% | 83% | 80% | |||
| IVIG | 47% | 49% | 49% | |||
| Rituximab | 41% | 17% | 31% | |||
| Platelet transfusion | 19% | 23% | 18% | |||
| Eltrombopag | 30% | 42% | 43% | |||
| Romiplostim | 30% | 30% | 36% | |||
| Avatrombopag | 0% | 3% | 29% | |||
| MMF | ? | 20% | 29% |
Symptom comparisons across the three surveys:
- Petechiae – same
- Bruising – same
- Fatigue reduced to 81% – this could relate to the uptake of Avatrombopag which increases platelet numbers in some patients
- Nosebleeds and gum bleeds, again down a little, could be again as a result of above (Avatrombopag)
- Heavy periods reported less, this could be down to a growing number of post-menopausal patients
- Mental health impact remains the same throughout
Most common reported symptoms of ITP:
- Fatigue 81%
- 94% bruising
- 75% Petechiae
| 2020 | 2022 | 2024 | ||||
| Petechiae | 71% | 76% | 75% | |||
| Bruising | 87% | 94% | 94% | |||
| Fatigue | 85% | 84% | 81% | |||
| Nosebleeds | 48% | 39% | 41% | |||
| Gum bleeds | 46% | 43% | 41% | |||
| Heavy periods | 26% | 20% | 18% |
- 51% of patients had cut back on flying and travelling because of ITP
- Generally, the reasons for cutting out pre-ITP activities were:
Low Platelet Count 57.45%
Fatigue 47.8%
Fear of Bleeding 69.15%
Abundance of bruising 23.4%
For future surveys we would like more members to take part, as the results are very important, not just to our clinicians and ITPSA, but also to our research colleagues at NIHR and HaemSTAR, The ITP Clinical Forum and also to the pharmaceutical companies we work with at ITPSA and our efforts to introduce potential funding avenues, to the areas we are able to highlight. We would ask our patients, if they are able to and are comfortable with doing so, take part in future surveys, which are, of course, in strictest confidence and we would stress that individuals are not identifiable in any way, shape or form. This information gathering is pivotal in our work moving forward.
ITP Patient Perception Survey 2024 Summary Data – PDF
