Progressive Pulmonary Fibrosis PSP engagement summary

Contents

Published: 12 July 2023

Version: 1.2

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Gathering uncertainties

Methods used (eg survey, focus groups, interviews)

Online survey from the 12th of February to the 15th of May 2021, hosted on REDCap cloud, plus hard copies sent through mail.

Responders and uncertaintiesNumberPercentage
Total respondents (across all methods) 638 100
Total patients and carers 526 82.4
Total health and care professionals 93 14.6
Other (people who identified themselves in more than a category or organisation representatives) 19 3
Total number of original uncertainties submitted 2542 100
Original uncertainties in scope 1746 68.7
Original uncertainties out of scope 796 31.3

Interim prioritisation

Methods used (eg survey, focus groups, interviews)

Online survey from 6th of Apr – 10th  May 2022, on Survey Monkey.

Responders and uncertaintiesNumberPercentage
Total number of indicative questions (answered & unanswered) 48 100
Number of verified answered questions 5 10.4
Number of verified unanswered questions 44 91.7
Number of verified unanswered questions included in the interim prioritisation 44 Not applicable
Total respondents (across all methods)    834 100
Total patients and carers 702 84.2
Total health and care professionals 132 15.8
Number of questions taken to final workshop 15 Not applicable

Final priority setting workshop

ParticipantsNumberPercentage
Total participants 22 100
Total patients and carers 11 50
Total health and care professionals 8 36
Other (people who identified themselves in more than a category) 3 14

Notes:

  • Some ‘questions’ did not actually pose a question, but instead made a statement. These were generally identified as out of scope.  On the main spreadsheet of questions they were not counted as a question, but had to be counted as a ‘question’ on the out of scope list due to the quantification requirement of the PSP engagement summary report.
  • Some questions contained elements that meant they could be grouped under more than one question. Each element was split and counted as a single question in this case.
  • during the interim prioritisation, the steering group split a question (predict AND diagnose acute exacerbation of PF).