Quality and Methodology Report

1. Methodology background

Official statistic	No
Frequency	Every three years
How compiled	National survey of fertility patients
Geographic coverage	United Kingdom (UK)
Sample size	1,500 responses
Document last revised	26 March 2025

2. About this quality and methodology report

This quality and methodology document contains information on the quality characteristics of the data as well as the methods used to create it. The information in this document will help you to:

• understand the strengths and limitations of the data

• reduce the risk of misusing data

• help you to decide suitable uses for the data

• understand the methods used to create the data

3. Important points

3.1. The Human Fertilisation and Embryology Authority (HFEA) ran the National Patient Survey 2024 from the 2 September 2024 to the 9 October 2024.

3.2. The information that we publish is a snapshot of the patient experience of various aspects the fertility sector from 2019 to 2024.

3.3. This publication combines both responses to specific questions as well as free or open text responses. This report represents the opinions of people who responded and is not fully representative of the patient population but provides an insight into patient’s opinions, feelings and behaviours.

3.4. These findings are instrumental in helping the HFEA to highlight areas of good practice and where improvements can be made.

3.5. Where relevant we have compared data collected from the survey to data from our Register. This is a live Register which relies on accurate reporting from clinics, information may be subject to change and the figures published here may differ slightly to those published before or in the future.

4. Methodology

4.1. Format and fieldwork period

The survey fieldwork period ran from the 2 September 2024 to the 9 October 2024. The online survey was open to anyone currently going through fertility treatment, and those who had undergone treatment in the past five years. This included patients, partners, surrogates and intended parents.

It was publicised widely across HFEA social media channels on Facebook, Twitter, Instagram, and LinkedIn. It was also promoted on the HFEA website, and through social media via external stakeholders such as patient representative organisations.

Respondents could respond via an online survey or via email using the questionnaire in an accessible Word document. It was restricted to only those who had been through fertility treatment in the last five years and when using the online questionnaire, it was only possible to take the survey once from the same browser.

4.2. Questionnaire development

The National Fertility Patient Survey 2018, was previously run by YouGov on behalf of the HFEA. The 2021 and 2024 surveys were designed, scripted, analysed and written up internally by the HFEA’s Research and Intelligence team. The previous Quality and Methodology Report is available for review on the HFEA website.

Prior to launching the survey, it was piloted with a small number of fertility patients, professional stakeholders, and support organisations. This was carried out to ensure that a range of stakeholders were able to provide input during the survey development phase, and to ensure clarity and relevance of questions. This advisory group included representatives from the HFEA’s patient engagement forum, the HFEA Authority and patient representative organisations.

4.3. Data cleaning

We received 2,046 responses to the survey, where 546 responses were excluded due to being incomplete or not meeting the inclusion criteria. Respondents did not need to provide an answer to every question, but did need to answer all required questions to be considered a complete response. The number of responses was counted after data cleaning had taken place. In total, 1,500 responses were included in the final analysis.

Eligibility criteria was:

• Over the age of 18

• Had treatment at an HFEA-licenced centre

• Either having treatment currently or had had treatment in the last five years

4.4. Generalisability

The profile of respondents is broadly similar to the known population of fertility patients (based on treatment type, age, region, partner status and ethnicity), taken from our national Register, with a few exceptions (see Section 6 of this report). No population weighting has been applied.

Sub-groups with less than 30 participants (N=<30) are not commented on in the report. Where possible, sub-groups have been combined to allow for analysis. For example, due to low numbers of respondents in transgender, non-binary and / or gender diverse couples (referred to as gender diverse couples in this report, N=29), we have grouped female-same sex, transgender, non-binary and / or gender diverse couples together (N=166).

There are small base sizes for some sub-groups. Where this is the case, we have flagged this with an asterisk (*).

4.5. Analysis

Attitudinal questions used Likert scales and, where relevant, responses to these have been combined and presented in the report as ‘Satisfied’ (‘Very satisfied and ‘Satisfied), ‘Neither satisfied nor dissatisfied’, ‘Dissatisfied’ (‘Dissatisfied’ and ‘Very dissatisfied’).

Where appropriate, percentages provided in figures have been calculated from the total number of responses received for the question due to survey routing. Patients who responded “Not applicable” to a question were excluded from analysis where relevant and corresponding N numbers are included in the figure notes directly below. Total counts are available in the supplementary underlying dataset of the report.

Initial free text responses were coded independently by three members of staff, using open, descriptive coding, forming initial coding frameworks. Further codes were developed and adapted in NVivo 13 (QSR International) as the analysis progressed. Coding frameworks were combined and applied to the entirety of the dataset. The framework ensured the responses were analysed consistently and allowed key themes and issues to be captured and summarised across the responses. Please see the qualitative codebook at the end of this report for a summary of the key themes identified.

Regular discussions around the findings were held to refine codes or findings. Intercoder reliability was compared and a score of > 0.70 was taken as sufficient level of agreement.

Throughout the report, the term ‘Patient’ has been used as an umbrella term to include Patients, Partners, Intended Parents and Surrogates. We have taken the decision to refer to all respondents as patients, since many partners, intended parents and surrogates also consider themselves to be patients, and will also have been involved in treatment themselves.

5. Quality summary

We make anonymised survey responses available publicly to show how patient experience of fertility treatment changes over time. This information is made available through the supplementary underlying dataset of this report.

5.1. Relevance

In the developmental stages of the national patient survey, the following actions were taken to ensure the survey results were relevant:

• Conducted internal focus groups to check the survey continued to match the current and future needs of HFEA staff

• Engaged with Patient Organisation Stakeholder Groups (POSG), members of the Patient Engagement Forum (PEF) and HFEA Authority to ensure suitability across patient groups

• Took part in targeted work to ensure it was as representative of the patient population as possible

• Engaged with professional stakeholders and clinics to ensure they were aware of the survey

5.2. Accuracy and reliability

Prior to publication, a number of quality checks were undertaken to ensure data accuracy. This included manually validating survey responses, structural checks to underlying data, consensus coding and a thorough check of all figures listed in the report (not the author of this report) and signed-off by a third member of the team. The report was also reviewed by several members of staff internally and by stakeholder groups to ensure accuracy of data and messages.

5.3. Coherence and comparability

The National Patient Survey has been designed to be undertaken in a consistent manner and feature significant overlap in terms of topics and questions. As such, most questions remained the same as the 2021 survey. However, some updates were carried out to better meet users’ needs, to better adhere to current best practice, and to ensure it could address key questions for upcoming HFEA work.

As a result, since the 2021 survey, 12 questions were removed, 18 questions were added, and 24 questions were amended.

Broadly, this survey did not ask for information on patient experience with multiple embryo transfer and multiple births. The survey expanded questions on use of treatment add-ons to allow benchmarking the use of other additional treatments, therapies, and technologies as well as the recent updates to the add-ons rating system. Additionally, changes were made to questions on the use of donor eggs, sperm and embryos. Instead of assessing wait times to access and reasons why a patient did or did not use donor gametes or embryos, this survey focused on ease of accessing gametes, the use of imported donor gametes and the clarity of communication of aspects of donor treatment. Finally, patient attitudes towards donating eggs, sperm and embryos to research was assessed, which has not been addressed in previous surveys.

Additionally, differences in percentages in previous published surveys and this report may be due to rounding, changes to how we grouped categories, or correcting for errors.

More detailed information on the changes to questions between the 2018, 2021 and 2024 surveys is available upon request.

5.4. Accessibility and clarity

Third-party software, built by SurveyMonkey, was used for this survey. SurveyMonkey enables the HFEA to create surveys that are compliant with WCAG 2.1 AA standards. SurveyMonkey also supports JAWS, NVDA, VoiceOver, and TalkBack screen readers. For more information on accessibility, please view SurveyMonkey website.

The HFEA provided the option for respondents to request the survey in an alternative, accessible format in cases where the survey was unable to meet user requirements.

Where possible, jargon, technical terms, or complex language has been avoided. All questions are written in plain, simple text to ensure clarity and to avoid ambiguity. A draft version of the survey was piloted with a range of stakeholders, who were invited to comment on the survey content and structure.

Our recommended format for accessible content is a combination of HTML web pages for narrative, charts and graphs (including alt-text), with data being provided in usable formats such as Excel spreadsheets. Underlying datasets provide more detailed statistics. Alternative formats can be requested for all tables/figures in our reports.

5.5. Strengths and limitations

5.5.1. Strengths

The profile of respondents is broadly similar to the known population of fertility patients (based on treatment type, age, region, partner status and ethnicity), taken from our National Register, with a few exceptions. Further demographic information broken down in Section 6 of this report.

Online surveys can positively impact data quality by validation rules and routing. These ensure respondents only receive questions, relevant to their experience, based on the answers they have provided.

Mandatory screening questions at the beginning of the survey were introduced, to minimise the risk of false persons completing the survey.

5.5.2. Limitations and mitigations

As with any self-completed survey there is a risk of incomplete or incorrect information. Cleaning and discussion of the responses by staff led to categorisation and subsequent action (either inclusion or exclusion) based on agreed upon eligibility and acceptance criteria. It was recognised that the survey was aimed at multiple groups of patients, at different points in their fertility journey and therefore patients may not have been able to answer all questions within the survey. Whilst survey routing and validation rules were utilised, it was decided that respondents did not need to provide an answer to every question but did need to answer all required questions to be considered a complete response.

As the data was self-reported, there is a risk of recall bias, particularly considering some of the participants may have had treatment up to five years ago (although only 19% of patients had treatment between two and five years ago).

Additionally, as the survey was run by the regulator of fertility treatment in the UK, there may be a risk of respondent bias, with patients perhaps more willing to share negative experiences to prompt action or conversely, less willing to share information about their journey, for fear it may prompt action that could affect their treatment. This may lead to the distribution of the responses highlighting patient’s experience at either end of the spectrum, providing insight at the extreme ends of experience.

Patients who have had a positive outcome from their treatment (such as a live birth or a pregnancy) or those who are already familiar with the HFEA may have been more likely to engage with the HFEA and take part in the survey (55% of respondents had had a baby or were currently pregnant from treatment compared to only 24% did not have a baby and 12% no outcome yet).

Changes to the wording of some questions and the answer options provided, whilst improving data quality, has meant that comparison between years was not always possible.

Some respondents commented on having treatment both in the UK and abroad. In these cases, it was unclear whether their responses were specifically referring to their experience in the UK and were therefore excluded from analysis.

5.6. Recent design and operational improvements

We worked with internal and external stakeholders to evaluate the survey against its aims and ensure that the questions remain relevant to the work of the HFEA and fertility patients across the UK. Information on the changes made to questions within the survey are detailed in the coherence and comparability section above.

There have been changes to questions on sex, gender and ethnicity. Each of these have been changed and improved upon based on learnings from more recent official statistical publications (Census UK, Census Canada). The language used to describe different partnership types has changed in this survey to be in line with more recent HFEA publications (Family formations in fertility treatment 2022). Previous versions of the survey included overlapping time categories for some questions, these have been removed in this iteration. However, this means that comparison between years may not be possible.

5.7. Timelines and punctuality

The fieldwork period of the survey began on the 02 September 2024 and lasted 6 weeks. Analysis and report writing began in October 2024 and was completed in February 2025. This report was published in March 2025.

5.8. Methods used to produce reports

The figures generated for this report are generated from the exported, anonymised redacted dataset extracted from SurveyMonkey. Quantitative and qualitative data analysis was conducted using PowerBI and NVivo 13 (QSR international), respectively.

6. Fertility patient population

To understand how our sample compares to the population of fertility patients held on the Register, population data counts were run for the following variables: Treatment type (IVF, DI and fertility preservation), Age, Partner type (male, female, none), Region, and Ethnicity. Responses were monitored against the population variables throughout the fieldwork period to ensure a representative sample.

Register counts and proportions were based on patient numbers, as opposed to cycle numbers, which are often used in other HFEA publications. This was to allow for more meaningful comparison with the profile of survey respondents.

To improve data accuracy and take account of variability in patient numbers and profile by year, we have used a five-year average, which covers the period from 2018-2022, with 2019 being the latest year of validated data available on the Register.

For more information about the Register and how we use it for research please refer to our most recent Quality and Methodology Report 2022.

6.1. Treatment type

Question: Which of the following best describes your most recent fertility treatment at a UK clinic…?

6.2. Latest round of treatment

Question: When was your most recent round of treatment? By treatment we mean IVF (In Vitro Fertilisation), Donor Insemination (DI), Intrauterine Insemination (IUI), or fertility preservation (e.g. egg or sperm freezing).

6.3. Age

Question: How old were you when you started your most recent fertility treatment?

6.4. Partner type

This is comprised from five questions in the survey:

Questions:

• Which of the following best describes your relationship status when you were going through fertility treatment?
• What sex were you registered at birth?,
• Which of the following best describes your gender?
• What sex was your partner registered at birth? and,
• Which of the following best describes your partner’s gender?

6.5. Sexuality

Question: Which of the following best describes your sexual orientation?

6.6. Region

Question: In which nation or English region did you receive your most recent fertility treatment? If more than one, choose only the most recent.

6.7. Ethnicity

Question: What is your ethnic group?

7. Qualitative codebook

The below table contains the themes identified by researchers in the free text responses to the National Patient Survey 2024. Each theme is accompanied by the relevant codes used in the analysis and a general description.