Patient Survey 2021 - Quality and Methodology Report

1. Methodology background

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. Methodology

• 3.1. The survey fieldwork period was from 02 November – 07 December 2021. The survey was open to anyone currently going through fertility treatment, and those who had undergone treatment in the past 10 years. This included patients, partners, surrogates and intended parents.
• 3.2. Prior to launching the survey, it was piloted with a small number of fertility patients, with a mix of backgrounds and circumstances.
• 3.3. The survey was promoted across HFEA social media channels, including Facebook, Twitter, Instagram and LinkedIn. The survey was also promoted through our website, through clinics, and via partner organisations and stakeholders.
• 3.4. In total, 1,233 responses were achieved once ineligible and partial completes were removed. An additional 635 responses were started but were either screened out or not completed.
• 3.5. 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 (more details in section 4 below). As a result, no population weighting has been applied.
• 3.6. Sub-groups with less than 25 participants (N=<25) are not reported. Where possible, sub-groups have been combined to allow for analysis. For example, due to low numbers of Black respondents (N=25), we have grouped Black, Asian, Mixed and Other ethnicity patients together to enable comparison by ethnicity.
• 3.7. Due to small base sizes, many of the sub-group differences cited in the report will not be statistically significant at the 95% confidence level. Where this is the case, an asterisk has been placed beside the figures quoted.
• 3.8. Comparisons have been made, where possible, with the National Fertility Patient Survey 2018, which was previously run by YouGov on behalf of the HFEA (see section 6 for detail). Due to in-house capability, the 2021 survey was designed scripted, analysed and written-up by the HFEA Intelligence team.
• 3.9. There were a number of ‘other, specify’ answer options in the survey. These free text answers have been coded to create additional answer categories. In addition, the two free-text open questions have not been coded. However, quotes have been used in the report, and more detailed analysis will be conducted internally by the HFEA.
• 3.10. 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.
• 3.11. Where values have been combined, such as ‘very satisfied’ and ‘fairly satisfied’ combined to make ‘Satisfied’, differences of c.1% may appear due to rounding.

4. Fertility patient population

• 4.1. To understand how our sample compares to the population of fertility patients held on the register, the Intelligence team ran population data counts 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. These comparison are included in section 6.
• 4.2. Register counts and proportions were based on patient numbers, as opposed to cycle numbers, which the HFEA usually use in other publications. This was to allow for more meaningful comparison with the profile of survey respondents.
• 4.3. 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 2015-2019, with 2019 being the latest year of validated data available on the Register.
• 4.4. For more information about the Register and how we use it for research please refer to the Fertility Treatment: Trends and Figures Quality and Methodology Report.

5. Quality assurance

• 5.1. Prior to publication, the Intelligence team undertook a number of quality checks to ensure data accuracy. This included a thorough check of all figures and charts listed in the report by another Research Manager (not the author) and the Head of Intelligence. The report was also reviewed by several members of staff internally to ensure accuracy of data and messages.

6. 2021 & 2018 sample profile vs. Register population profile

• 6.1. Treatment Type
  Q. Which of the following best describes your most recent fertility treatment at a UK clinic...?

  	2021 Survey		Survey		Register 2015-19 average
  	%	N	%	N	%	N
  IVF	89%	1,094	80%	815	88%	1,085
  DI	3%	31	6%	65	5%	62
  IUI	6%	71	5%	50	-	-
  Fertility Preservation	2%	25	9%	86	11%	136

• 6.2. Latest round of treatment
  Q. 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).

  	2021 Survey		2018 Survey		2015-19 average
  	%	N	%	N	%	N
  Currently or in the last two years	77%	952	64%	649	N/A	N/A
  Between 2 and 5 years ago	16%	201	29%	294	N/A	N/A
  Between 6 and 10 years ago	6%	80	5%	49	N/A	N/A

• 6.3. Age
  Q. How old were you when you started your most recent fertility treatment?

  	2021 Survey		2018 Survey		Register 2015-19 average
  	%	N	%	N	%	N
  Under 35	45%	552	41%	414	42%	518
  35-37	25%	310	23%	232	23%	284
  38-39	15%	187	28%	283	15%	185
  40-42	10%	128			14%	173
  43-44	3%	35	7%	72	4%	49
  45+	2%	20			3%	37

• 6.4. Partner type
  This is comprised from three questions in the survey:
  Q. Please select the option that best applies. I am… a patient, a partner, an intended parent, a surrogate, Q. What sex were you registered at birth?, and, Q. What sex was your partner registered at birth?

  	2021 Survey		2018 Survey		Register 2015-19 average
  	%	N	%	N	%	N
  Male partner	78%	959	92%	939	89%	1097
  Female partner	11%	140	2%	25	4%	49
  No partner	9%	117	3%	28	4%	49

• 6.5. Region
  Q. In which part of the UK did you receive fertility treatment? If more than one, please choose only the most recent.

  	2021 Survey		2018 Survey		Register 2015-19 average
  	%	N	%	N	%	N
  East Midlands	6%	72	5%	54	6%	74
  South East	13%	164	10%	106	10%	123
  East	3%	43	5%	50	5%	62
  South West	8%	94	4%	41	4%	49
  London	24%	300	37%	372	34%	419
  Wales	2%	27	4%	36	3%	37
  North East	5%	65	3%	31	3%	37
  West Midlands	6%	71	6%	57	6%	74
  North West	13%	158	12%	123	12%	148
  Yorkshire & Humberside	8%	104	6%	57	6%	74
  Northern Ireland	3%	36	2%	23	3%	37
  Scotland	8%	95	7%	68	7%	86

• 6.6. Ethnicity
  Q. What is your ethnic group?

  	2021 Survey		2018 Survey		Register 2015-19 average
  	%	N	%	N	%	N
  White	89%	1,102	N/A	N/A	79%	974
  Asian	6%	73	N/A	N/A	13%	160
  Black	2%	25	N/A	N/A	3%	37
  Mixed	2%	28	N/A	N/A	2%	25