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November 2018. 1. Patient Numbers. Total number of PID patients. The majority of services have less than 300 registered PID patients. Values ranged from 50 to 1000 patients, while the median number was 202. Responses: 30 of 32. Total number of PID patients.
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Total number of PID patients The majority of services have less than 300 registered PID patients. Values ranged from 50 to 1000 patients, while the median number was 202. Responses: 30 of 32
Total number of PID patients • The graphics to the right show the total number of PID patients registered in 2017 (top) and 2018 (bottom). While the range of values has remained constant, the data suggests that services have slightly fewer registered PID patients this year: The median has fallen from 214 (reported last year) to 202. Note: In 2017 centres were not asked to differentiate between PID and SID patients.
Total number of SID patients The majority of services have less than 60 SID patients, with the median number being 34. The range of values was 1 to 200. Responses: 28 of 32
Total number of patients on Ig replacement There is a reasonably even distribution of values for the number of patients on Ig replacement. The median response was 132, with a range from 31 to 450 patients. Responses: 32 of 32
Total number of patients on Ig replacement • The data suggests that services have more patients on Ig replacement therapy in 2018 (graphic below and to the right). The median number has increased from 116 last year (graphic to the right) to 132, and the maximum reported value has also risen (from 330 to 450).
Number of patients on IV Ig in hospital The majority of services have less than 80 patients on IV Ig in hospital, with the median number being 43, with a range from 1 to 250. Responses: 31 of 32
Number of patients on IV Ig at home Half of the services had less than five patients on IV Ig at home, with four services having no patients on IV Ig at home. The median number was 5 and responses ranged from 0 to 55. Responses: 32 of 32
Number of patients on sc Ig by pump in hospital Ten services had no patients on sc Ig in hospital, and 50% of the services who responded had less than two. The median response was 1, with a range from 0 to 21. Responses: 29 of 32
Number of patients on sc Ig by pump at home There is reasonable variation in responses giving the number of patients on sc Ig by pump at home. The median value was 55, and answers ranged from 8 to 173. Responses: 32 of 32
Number of patients on sc Ig rapid push at home Seventy-five percent of services have less than 10 patients on sc Ig rapid push at home, with six services having zero. The range of non-zero values was from1 to 83. Responses: 32 of 32
Number of patients by treatment type This graphic provides a summary of numbers of patients, by treatment type, at a national level. The intention is to use this as a baseline in future censuses.
Does initial HT training include a home visit? For two-thirds of services, initial HT training includes a home visit. Responses: 32 of 32
Is infusion technique reviewed routinely? The majority of trusts review infusion technique every 12 to 24 months. Responses: 32 of 32
How is infusion technique reviewed? Over 60% of services review patients’ infusion technique (competency) with an observed infusion either in hospital or in the patient’s home. 20% follow a mix of approaches (a combination of observed infusions and discussion about infusions only). The final 20% do not undertake an observed infusion to assess competency and assess technique through discussion only. Responses: 32 of 32
Number of immunology consultants in your centre According to this census, there are 91 immunology consultants nationally. Services reported between 1 and 7 consultants at their centre. The median value was 3. Responses: 32 of 32
Number of unfilled consultant posts Six services report having one unfilled consultant post, with one service reporting two. Responses: 29 of 32
Number of consultants retiring in the next 5 years The total number of consultants expected to retire in the next five years is fourteen. Ten services report that one consultant will be retiring in this period, with two services expecting two consultants to retire. Responses: 27 of 32
Number of trainee NTNs full time One third of services have no full time trainees, with another third of services having one trainee full time. The median value was one, with one service reporting seven. Responses: 31 of 32
Number of trainees less than full time training Four services have one part time trainee NTN. Another four services have two trainees part time. Responses: 31 of 32
Number of unfilled training posts Three services have unfilled training positions. Responses: 30 of 32
Have you identified any cases of persistent norovirus in your primary or secondary immunodeficiency patients? Approximately two-thirds of services reported cases of persistent norovirus in their PID or SID patients. Responses: 32 of 32
How many patients with persistent norovirus are you aware of in your PID patients? For services that reported cases of norovirus, the number of patients affected ranged from one to six. In total there were 41 recorded cases of norovirus. Responses: 19 of 32 Note: The three paediatric services who responded to this question were not included in the graphic to the right. The total number of cases for these three services was reported to be between 10 and 20.
How many patients with persistent norovirus are you aware of in your SID patients? Eight services reported persistent norovirus in one of their SID patients, with one service estimating two to five cases. Responses: 24 of 32
If you have no patients with persistent norovirus, can you say why? Responses: 9 of 32
Do you routinely perform LFTs for patients on replacement Ig? Ninety percent of services perform routine LFTs for patients on replacement Ig at least every six months. Responses: 32 of 32
Do you carry out serum save and or hepatitis screening on patients receiving Ig replacement: before starting? Responses: 31 of 32
Do you carry out serum save and or hepatitis screening on patients receiving Ig replacement: on product change? Responses: 23 of 32
Do you carry out serum save and or hepatitis screening on patients receiving Ig replacement: annually? Responses: 31 of 32
If serum save how many samples have you looked back at in last 10 years? Over sixty percent of services report never having looked back at serum save samples in the last ten years. Four services have looked at more than ten samples in this period. Responses: 30 of 32
How many PID patients on Ig replacement prescribed through your service have switched products as a result of 2017 commissioning guidance? Responses: 28 of 32
How many SID patients on Ig replacement prescribed through your service have switched products as a result of 2017 commissioning guidance? Responses: 27 of 32
Total patients (PID + SID) on Ig replacement who have switched products as a result of 2017 commissioning guidance Nationally, the total number of patients switching products as a result of commissioning guidance was 170.
How many PID patients managed by your service have been switched as a result of Ig product withdrawal in the last 12 months? Product withdrawal had a greater effect than commissioning guidance on product switches for PID patients. The median number of patients affected was 14 with a range of values from 0 to 55. Responses: 32 of 32
How many SID patients managed by your service have been switched as a result of Ig product withdrawal in the last 12 months? Again, product withdrawal had a greater effect than commissioning guidance on product switches for SID patients. Of the fifteen services with non-zero values, the median number of patients affected was 6 with a range of values from 1 to 30. Responses: 32 of 32
Total patients (PID + SID) who have been switched as a result of Ig product withdrawal in the last 12 months The total number of patients switching products due to product withdrawal was 632.
How many patients have suffered a local reaction following product switch? Of the 802 patients who switched product – either as a result of commissioning guidance or product withdrawal – there were 5 reported cases of a local reaction. Reactions included: painful rashes; itchiness. Responses: 32 of 32
How many patients have suffered a systemic reaction following product switch? Of the 802 patients who switched product – either as a result of commissioning guidance or product withdrawal – there were 7 reported systemic reactions. No patients required admission to hospital as a result of reactions. Reactions included: Joint and neck pain, headache, stomach cramps, and tiredness. Responses: 30 of 32
How many PID patients have had treatment delayed due to product non-availability? Seventeen services report that PID patients have had treatment delayed due to product non-availability, with a range of non-zero answers from 1 to 10 patients. Responses: 32 of 32
How many SID patients have had treatment delayed due to product non-availability? Six services report that SID patients have had treatment delayed due to product non-availability, with a range of non-zero answers from 1 to 13 patients. Responses: 28 of 32
Product switch arrangements • Twenty-four services reported that the requirement to switch products led to other nursing activity being displaced. These activities included outpatient clinics, home therapy training techniques for new patients, nursing support for hospital-based infusions, administrative work and CPD. In order to accommodate the requirement for increased nursing input, overtime was worked in 10 services. • Twenty-two services reported that additional appointments were required to organise immunoglobulin switches (producing 300 additional appointments nationally). In 17 services, product switch was arranged to coincide with previously planned infusions, and in 5 services the switch was arranged by bringing the annual review appointment forward.
