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Patient reported experiences with COVID-19 vaccination

Aug 20, 2021
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Patients with myeloproliferative neoplasms (MPN) and other haematological malignancies have been identified as high risk for COVID-19-associated complications. Using the Joint Committee on Vaccination and Immunisation (JCVI) recommendations, these patients were given prioritization to receive a COVID-19 vaccination in the United Kingdom.1 As the population with MPN, who have pre-existing immune dysregulation, may have attenuated response to COVID-19 exposure when becoming immunocompromised, attention has been given to their response to COVID-19 vaccines, which you can find summarized here.  

In addition to clinical efficacy and safety data, gathering more rudimentary information on patient reported experiences could aid future vaccination programmes. Recently, a large-scale internet-based survey was published by Saunders, et al. in HemaSphere, researching patients with MPN living in the United Kingdom during the vaccine implementation in March 2021. Investigators asked questions related to compliance, concerns, trust in healthcare providers (HCPs), and changes to MPN symptom burden.1

Study design

Potential responders took part either via email, website article, or social media platforms coordinated from the MPN Voice charity on March 10, 2021, with respondents given 21 days to complete the surveys anonymously. A total of 1,218 patients responded, of which 964 (79.1%) answered all questions, and were included for analysis. Patient characteristics for the analysis cohort are summarized in Table 1.

Table 1. Patient characteristics*

Characteristic, %

N = 964

Female

73.4

Age

 

              16–35 years

2.8

              36–59 years

41.8

              ≥60 years

55.4

Ethnicity

 

              White—English, Welsh, Scottish, Irish,    or British

88.7

              Other

10.9

              Prefer not to answer

0.2

Country, England

79.2

Diagnosis

 

              PV

28

              ET

56.9

              MF

4.4

              MPN—unclassified

1.7

              Other

9.1

Current treatment

 

              Observation

15.2

              Venesection

12.6

              Hydroxycarbamide

49.7

              Interferon

2.6

              Pegylated interferon A

11.5

              Anagrelide

3.0

              Ruxolitinib

4.4

              Busulfan

0.2

              Other

11.7

A, alpha; ET, essential thrombocytopenia; MF, primary myelofibrosis; MPN, myeloproliferative neoplasms; PV, polycythemia vera.
*Data from Saunders, et al.1

Results

Vaccine compliance

At survey closure, a total of 882 (91.5%) respondents reported that they received a COVID-19 vaccine; with the majority receiving either AstraZeneca or Pfizer (51.8% and 46.9%, respectively) (Table 2).

Table 2. Data on vaccine compliance and vaccines received*

Dose received, %

N = 957

First dose

85.6

Second dose

5.9

Neither

8.5

Vaccine received, %

 

AstraZeneca (ChAdOx1-S [recombinant])

51.8

Pfizer (BNT162b2)

46.9

Moderna (mRNA-1273)

1.1

Johnson & Johnson (JNJ-78436735)

0.1

mRNA; messenger RNA.
*Data from Saunders, et al.1

In total, 82 patients (8.5%) had not received a COVID-19 vaccine; however, 29 of these patients had a future vaccine appointment. For those without a booked appointment, 14 had been offered a vaccine, while 39 had not. Investigators highlighted through anecdotal evidence that some patients had not had their MPN identified as a blood cancer by their primary care provider, resulting in such patients perhaps not being identified by the JCVI category. A total of eight patients reported they had declined an offer for vaccination.

Concerns about vaccine

A total of 147 patients (16.7%), out of the 882 patients who received a vaccine, had concerns. These are summarized by common themes in Table 3. Common concerns from respondents who received a vaccine included the risk of side effects (SEs) and potential serious reactions (30.6%). Notably, only a minority of these patients reported the United Kingdom’s delayed second dose strategy (5.4%) as a concern, which was given particular attention from the healthcare community at the time, owing to the unknown efficacy or safety.

Table 3. Common concern themes in patients who did or did not receive a vaccine*

Concerns

Total = 155

Received vaccine (n = 147), %

 

              Risk of side effects or potential serious reactions

30.6

              Vaccine efficacy in patients with MPN

15.4

              Interference with underlying MPN condition

14.3

              Potential interaction with MPN-directed therapies

10.2

              Risk of thrombocytopenic events

9.5

              Unknown long-term risk of vaccines

6.8

              Safety of new vaccines in general

6.1

              UK’s delayed second dose strategy 

5.4

Declined vaccine offer (n= 8), n (%)

 

              SEs

5 (62.5)

              Vaccine development happening too quickly

4 (50.0)

              Safety of vaccines

3 (37.5)

              Perceived lack of efficacy due to MPN

2 (25.0)

MPN, myeloproliferative neoplasms; SEs, side effects.
*Data from Saunders, et al.1

Information on vaccines prior to appointment

When asking patients who received a vaccine if they felt they had sufficient information prior to their appointment, 78 (8.8%) respondents answered no. Of such respondents, 55 patients gave free text reasons with the most common concerns including a desire for more information on how vaccines interact with MPN (54.5%). Less common concerns included the exact timing of the second dose, potential interactions with current MPN medications, long-term SEs, and general efficacy. There were a small proportion of patients (10.9%) who reported they did not receive a vaccine booklet handout prior to vaccination.

Vaccine preference

The investigators also asked respondents whether they had a particular vaccine preference, with most patients (82.9%) reporting no preference. In total, 138 respondents reported a preference for a specific vaccine. The most common reasons are summarized in Table 4 and respondents could provide more than one reason for their preference.

Table 4. Summary of vaccine preferences and reasons*

Preference

Total (n = 138)

Pfizer, n (%)

90 (65.2)

Reasons for Pfizer, % of respondents (n = 90)

              Greater efficacy in protection

35.5

              Lesser SE profile

13.0

              More widely available information

5.1

AstraZeneca, n (%)

42 (30.4)

Reasons for AstraZeneca, % of respondents (n = 42)

              Potential serious reactions or anaphylaxis with the Pfizer vaccine

5.8

              Better protection, particularly due to delayed second dosing strategy 

5.8

              Made in United Kingdom, %

5.8

Moderna, n (%)

4 (2.9)

Other, n (%)

2 (1.4)

SE, side effect.
*Data from Saunders, et al.1

Reasoning for Pfizer preference was more general, relating to greater efficacy and less risk for SEs. Reasoning for AstraZeneca preference was more specific, relating to concerns of anaphylaxis with Pfizer vaccines, or better protection related from a delayed second dosing strategy.

Trust in HCP

Respondents were asked whether they trusted their HCP to honestly inform them on the risks and benefits of vaccination. Of the 885 patients who responded, 788 (89.0%) answered yes while 97 (11.0%) reported mistrust in their HCP. Common reasons for mistrust included:

  • HCPs not knowing enough about COVID-19 vaccines (34%);
  • HCPs not explaining the risks or benefits (30%);
  • HCPs not having up to date information on MPN or vaccines in patients with MPN (12%); and
  • a lack of trust in their primary care provider (10%).

Changes to MPN symptom burden

Patients were asked to report changes to their MPN symptom burden using the MPN-10 score; 141 (16%) of the 882 vaccinated respondents reported exacerbation or worsening of baseline MPN symptoms. A total of 124 patients completed both pre- and post-vaccination assessment, with a median pre-vaccination MPN-10 score of 28 (range, 3–69) and post-vaccination score of 41 (range, 6–90).

There was an overall cumulative change of +8 (p < 0.0001). Fatigue showed the largest increase in symptom burden across MPN subtypes (polycythemia vera, +2.83; essential thrombocytopenia, +2.66; primary myelofibrosis, +2.00).

A total of 874 respondents reported SEs based on six multiple choice questions. The most common SEs are summarized in Table 5. The most frequently experienced SEs were sore arm (80.5%), followed by fatigue (57.7%), and headache (44.9%). Most patients reported that their symptoms resolved within 36 hours.

Table 5. Common side effects reported in patients who received COVID-19 vaccine*

Side effect

Total answered, n

Symptomatic, %

Resolved in 36 hours, %

Fever

618

29.9

87.6

Redness/pain at site

644

32.9

67.0

Myalgia

678

41.7

73.9

Headache

677

44.9

75.3

Fatigue

733

57.7

67.8

Sore arm

805

80.5

69.6

*Data from Saunders, et al.1

Finally, 954 respondents answered a question on prior history of thrombotic events before vaccination, and 734 (76.9%) of patients reported no prior history. No respondents reported a thrombotic event following COVID-19 vaccination.

Conclusion

Overall, this survey revealed a high uptake of COVID-19 vaccination in patients with MPN and generally favorable attitudes. Valuable information was also given on how to improve vaccine experience for patients, which mainly pertains to more information given prior to vaccination, both on vaccines in general and their interaction in patients with MPN. Finally, MPN symptom burden was statistically significantly increased; however, it is not possible to distinguish between MPN-associated symptoms and vaccine generated symptoms.

  1. Saunders J, Curto-Garcia N, Sriskandarajah P, et al. Large scale internet-based survey of patients with a myeloproliferative neoplasm: opinions and experiences regarding SARS-CoV-2 (COVID-19) vaccination strategies in 2021. Hemasphere. 2021;5(7):e609. DOI: 1097/HS9.0000000000000609

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