Table 1.
Questionnaire measures and scales
| Measure/scale | Description | Q1 | Q2 |
|---|---|---|---|
| Knowledge | 10 item scale containing questions on fragile X syndrome (true/false/unsure). A score of 7 or higher is classified as ‘good’ knowledge.55 | √ | √ |
| Attitudes | 5 item scale (0–4) used to assess a woman's attitude to screening (beneficial/harmful; important/unimportant, bad thing/good thing, pleasant/unpleasant, worrying/not worrying). Dichotomous scale: women are classified as having a positive (11–20) or a negative (0–10) attitude towards screening.49 | √ | |
| Multidimensional model of informed choice | Defines an informed choice as a decision made with ‘good’ knowledge, which is consistent with a person's values. Incorporates three dimensions: knowledge, attitudes and uptake. Dichotomous scale: ‘informed choice’ or ‘not informed choice’.49 | √ | |
| Deliberation | 6 item scale measuring the extent to which a decision is deliberated on a 5 point Likert scale (0 = strongly agree—4 = strongly disagree). Dichotomous scale: responses below the midpoint (11 or under) classified as not deliberated and those at or above the midpoint as deliberated.53 | √ | |
| Decisional conflict scale | 16 item scale measuring uncertainty about a course of action on a 5 point Likert scale (0 = strongly agree—4 = strongly disagree). Mean scores are reported with higher scores indicating higher decisional conflict. Scores range from 0 to 100 with scores over 37.5 associated with decision delay or uncertainty about implementation.60 | √ | |
| Depression Anxiety Stress Scale (DASS-21) | 21 item scale divided into 3 subscales measuring depression, anxiety and stress. Responses are classified into 5 categories: 1 (normal) to 5 (extremely severe).61 62 | √ | √ |
| State Trait Anxiety Index (STAI-6) | 6 item scale measuring state anxiety. The maximum score is 80 with scores 31–49 considered as average and scores over 50 indicating elevated state anxiety.59 | √ | √ |
| Health belief | 16 items measuring the importance of a range of factors which may influence decision-making: perceived benefits; perceived susceptibility; perceived severity and perceived barriers in a woman's decision to accept or decline testing for FXS.47 63 | √ | |
| Decisional regret | 5 item scale measuring distress or remorse after a healthcare decision using a 5 point Likert scale (0–4). Scores range from 0–100 with higher scores indicating a higher level of regret.64 | √ | |
| Willingness-to-pay (WTP) | 2 questions (piloted) that address WTP and gross family income. Income question has six income ranges with a tick box. WTP question has 11 item income values with a tick box and sub-questions that address: (1) utility of test (information only or information plus decision-making); and (2) who receives a test result (recipient only or recipient plus shared with health share professionals). | √ | |
| Sociodemographics | Marital status, age, parity, reproductive life-stage, education, occupation, postcode. | √ |