Evaluation of Patient Access to People With Cystic Fibrosis (CF) and Healthcare Professionals

The effect on levels of anxiety of people with CF as measured by changes in the General Anxiety Disorder-7 (GAD-7) questionnaire.

This questionnaire consists of 7 items (and one non-scored item which assigns weight to the degree to which anxiety problems have affected the patient's level of function), assessing over the last 2 weeks, how often patients have been bothered by anxiety related problems. Possible scores range from 0 (not at all) to 3 (nearly every day), with total scores of 0-5, 6-10. 11-15, and 15-21 representing mild, moderate, moderately severe and severe anxiety respectively.

The effect on quality of life of people with CF as measured by changes in the Cystic Fibrosis Questionnaire-Revised (CFQ-R) questionnaire.

The CFQ-R is a disease-specific health-related qualify of life measure for people with CF and has undergone extensive reliability and validity testing. This questionnaire consists of 50 items, and assesses the following domains; Physical Functioning, Vitality, Health Perceptions, Respiratory Symptoms, Treatment Burden, Role Functioning, Emotional Functioning, and Social Functioning. Scores ranged from 0 to 100, with higher scores indicating better health-related qualify of life.

The effect on levels of depression of people with CF as measured by changes in the Patient Health Questionnaire-9 (PHQ-9) questionnaire.

The questionnaire is a brief (9 scored items and a non-scored item which assigns weight to the degree to which depressive problems have affected the patient's level of function) and multipurpose instrument for screening, diagnosing, measuring and monitoring the severity of depression in the past 2 weeks. Possible scores range from 0 (not at all) to 3 (nearly every day), with total scores of 0-5, 6-10. 11-15, and 15-21 representing mild, moderate, moderately severe and severe depression respectively.

Self-efficacy of people with CF as measured by changes in the Self-Efficacy to Manage Chronic Disease Scale (SEMCD) questionnaire.

The 6 item scale covers several domains that are common across many chronic diseases; symptom control, role function, emotional functioning and communicating with physicians.

The questionnaire asks participants how confident they are in doing certain activities. Responses are on a Likert scale from 1 (not very confident) to 10 (very confident). Participants choose a number that corresponds to their confidence that they can do the tasks regularly at the present time. The score for the scale is the mean of the six items; higher numbers reflect greater self efficacy.

Patient motivation towards health and care of people with CF as measured by changes in the Patient Activation Measure -13 (PAM-13) questionnaire.

The questionnaire is a validated, commercially licenced tool (a US company, Insignia Health LLC) and consists of 13 items. Scores range between 0 and 100; the resulting score places the individual at one of four levels of activation:

• Level 1 (0-25): Individuals tend to be passive and feel overwhelmed by managing their own health and may not understand their role in the care process
• Level 2 (26-50): Individuals may lack the knowledge and confidence to manage their health
• Level 3 (51-75): Individuals appear to be taking action but may still lack the confidence and skill to support their behaviours
• Level 4 (76-100): Individuals have adopted many of the behaviours needed to support their health but may not be able to maintain them in the face of life stressors

Patient and provider relationships of people with CF as measured by changes in the Perceived Efficacy in Patient-Physician Interaction Questionnaire (PEPPI) questionnaire.

The questionnaire consists of 10 items, and assesses the participants' level of trust in and interactions with their healthcare professionals (5 items on a scale of 0-5; not at all confident to very confident) and levels of self-efficacy (confidence) in self-care and self-management (5 items on a scale of 0-10; not at all confident to very confident). The total score is obtained by summing item scores, ranging from 10-50, with 50 representing high patient perceived self efficacy.

Computer literacy of people with CF as measured by changes in an in-house questionnaire (questions taken from 'My Diabetes, My way' Questionnaire). It consists of 7 items related to computer literacy including the types, frequency, and experience of computer/internet use.

Perceptions of and intention to engage with patient access by people with CF as measured by changes in an in-house questionnaire (derived from several previous questionnaires, some of which are theory driven).

The questionnaire has 3 sections:

• Section I has 9 items and asks questions about what people with CF think about having access to their electronic healthcare record and reasons for accessing, and not accessing, their record.
• Section II has 11 items and asks questions about how might having access to their electronic healthcare record affect them. The responses in Section II are Likert, on a scale from Disagree to Agree, and also includes the option of 'Don't know'.
• Section III has 18 items, based on the drivers and barriers to patients' acceptance of patient access, with responses of strongly disagree (1) to strongly agree (5).

Patient access system usability as measured by changes in the System Usability Scale (SUS). It consists of a 10 item questionnaire with five response options for respondents; from Strongly agree to Strongly disagree.

The questionnaire consists of 10 items using Likert responses. Participants will rank each question from 0 to 4 based on how much they agree with each of the 10 statements; 4 means they agree completely, 0 means they disagree vehemently.

For items 1, 3, 5, 7, and 9 the score contribution is the scale position minus 1. For items 2,4,6,8 and 10, the contribution is 5 minus the scale position. Scores for each question then added together and then multiplied by 2.5 to convert the original scores (0-40) to obtain the overall value of usability scale (0-100). Although the scores are 0-100, these are not percentages; a SUS score above a 68 would be considered above average and anything below 68 is below average.

Patient access system usability as measured by changes in the Perceived Health Web Site Usability Questionnaire (PHWSUQ)

The PHWSUQ has 12 items on a 7-point Likert scale, and assesses three usability dimensions: satisfaction (very unsatisfied to very satisfied), ease of use (strongly disagree to strongly agree), and usefulness (strongly disagree to strongly agree). The questionnaire was modified to exclude two items relating to satisfaction as these are not relevant to patient access; ease of listening to audio-information, and quality of video information.

Satisfaction scores range between 4 - 28, ease of use scores range between 3 - 21 and usefulness scores range between 3 - 21; higher scores reflect better usability.