Plain English summary
Introduction
Materials and methods
Stage I: concept elicitation
Design, setting, and participants
Characteristic | n | % |
---|---|---|
Concept elicitation patients | ||
Country | ||
USA | 1116 | 56.3 |
UK | 383 | 19.3 |
Canada | 105 | 5.30 |
Australia | 90 | 4.54 |
India | 33 | 1.66 |
Ireland | 24 | 1.21 |
New Zealand | 22 | 1.11 |
Germany | 20 | 1.01 |
Othera | 190 | 9.58 |
Total UTIs experienced | ||
2–3 | 185 | 9.33 |
4–6 | 340 | 17.2 |
7–10 | 395 | 19.9 |
11–15 | 297 | 15.0 |
> 15 | 766 | 38.6 |
Time between infections | ||
< 2 weeks | 211 | 10.6 |
2–4 weeks | 445 | 22.4 |
1–3 months | 904 | 45.6 |
3–6 months | 423 | 21.3 |
Typical symptom duration | ||
< 24 h | 99 | 4.99 |
24–48 h | 493 | 24.86 |
3–5 days | 653 | 32.93 |
5–7 days | 345 | 17.40 |
> 7 days | 393 | 19.82 |
Expert clinicians | ||
Professionb | ||
General practitioner | 8 | 53.3 |
Specialist doctor | 6 | 40.0 |
Specialist nurse practitioner | 1 | 6.67 |
Gender | ||
Female | 12 | 80.0 |
Male | 3 | 20.0 |
Country of practice | ||
United States | 8 | 53.3 |
United Kingdom | 6 | 40.0 |
Canada | 1 | 6.67 |
Ethnicity | ||
White | 10 | 66.7 |
Asian | 4 | 26.7 |
Other | 1 | 6.67 |
Cognitive interview patients | ||
Gender | ||
Female | 25 | 89.3 |
Male | 2 | 7.14 |
Non-binary | 1 | 3.57 |
Country of residence | ||
United States | 9 | 32.1 |
United Kingdom | 7 | 25.0 |
Canada | 4 | 14.3 |
Australia | 2 | 7.14 |
Austria | 1 | 3.57 |
Netherlands | 1 | 3.57 |
New Zealand | 1 | 3.57 |
South Africa | 1 | 3.57 |
Ukraine | 1 | 3.57 |
United Arab Emirates | 1 | 3.57 |
Ethnicity | ||
White | 25 | 89.3 |
Asian | 2 | 7.14 |
Spanish or Latino American | 1 | 3.57 |
Fluency in English | ||
Native or bilingual | 25 | 89.3 |
Advanced or proficient | 3 | 10.7 |
Relationship status | ||
Married or in a civil partnership | 17 | 60.7 |
In a relationship | 6 | 21.4 |
Single | 4 | 14.3 |
Separated or divorced | 1 | 3.57 |
Pilot patients | ||
Gender | ||
Female | 233 | 97.1 |
Male | 5 | 2.08 |
Non-binary | 2 | .83 |
Country of residence | ||
United States | 93 | 38.8 |
United Kingdom | 77 | 32.1 |
Australia | 18 | 7.50 |
Canada | 16 | 6.67 |
France | 4 | 1.67 |
Sweden | 4 | 1.67 |
Malaysia | 3 | 1.25 |
New Zealand | 3 | 1.25 |
Spain | 3 | 1.25 |
Otherc | 19 | 4.58 |
Ethnicity | ||
White | 214 | 89.2 |
Asian | 11 | 4.58 |
Spanish or Latino American | 6 | 2.50 |
Mixed | 2 | .83 |
Black or African American | 1 | .42 |
Native Hawaiian or other Pacific Islander | 1 | .42 |
Prefer not to say | 5 | 2.08 |
Fluency in English | ||
Native or bilingual | 195 | 81.2 |
Advanced or proficient | 45 | 18.8 |
Relationship status | ||
Married or in a civil partnership | 123 | 51.3 |
In a relationship | 78 | 32.5 |
Single | 32 | 13.3 |
Engaged | 4 | 1.67 |
Widowed | 1 | .42 |
Prefer not to say | 2 | .83 |
Procedure
Data handling
Stage II: expert clinician screening
Design, setting, and participants
Procedure
Data handling
Stage III: patient cognitive interviews
Design, setting, and participants
Procedure
Data handling
Stage IV: RUTIIQ pilot testing
Design, setting, and participants
Procedure
Data handling
Results
Stage I: concept elicitation
Stage II: expert clinician screening
Stage III: patient cognitive interviews
Stage IV: RUTIIQ pilot testing
Exploratory factor analysis
Factor: item | Factor loading | Communality | ||||
---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | 5 | ||
Factor-1: Patient satisfactiona | ||||||
E1. I have generally felt content with the medical care I have been receiving | .83 | − .07 | .09 | − .06 | − .09 | .71 |
E2. I have felt confident about being able to get the medical care I need | .87 | − .07 | .07 | − .06 | − .13 | .79 |
E3. I have felt like my medical concerns are taken seriously | .88 | − .06 | − .09 | − .08 | − .03 | .80 |
E4. I have had confidence in the decisions made about my care and treatment | .88 | − .07 | .05 | − .08 | − .03 | .80 |
E5. I have felt confident about being able to access UTI testing and treatment quickly enough | .68 | − .05 | .00 | − .04 | .00 | .47 |
E6. I have felt listened to by my healthcare provider(s) | .89 | − .09 | − .07 | − .13 | − .02 | .82 |
E7. I have had easy access to the medical specialists I need | .79 | − .03 | .04 | .04 | − .04 | .64 |
E8. I have felt like my healthcare provider(s) treat me with respect and dignity | .82 | − .06 | − .23 | − .06 | .00 | .73 |
E9. I have been as involved as I have wanted to be in the decisions made about my care and treatment | .72 | − .08 | − .06 | − .03 | .01 | .52 |
E10. I have trusted my healthcare provider(s) | .89 | − .11 | − .06 | − .06 | − .02 | .81 |
Factor-2: Work and activity interference | ||||||
C1. I regularly missed full or partial days of work, home responsibilities or studying | − .08 | .79 | .21 | .09 | .06 | .69 |
C2. My ability to work was impaired | − .06 | .91 | .18 | .13 | .04 | .87 |
C3. I regularly put pressure on myself to work despite feeling unwell | − .08 | .61 | .22 | .18 | .23 | .51 |
C4. The kind or amount of work I could do was limited | − .10 | .85 | .25 | .09 | .02 | .80 |
C5. It was more difficult than usual to concentrate on my work | − .14 | .78 | .25 | .29 | .10 | .78 |
C6. It was more difficult than usual to handle my workload | − .11 | .84 | .26 | .22 | .08 | .84 |
C7. I have felt that the quality of my work was lower than usual | − .12 | .83 | .20 | .16 | .10 | .78 |
Factor-3: Social wellbeing | ||||||
B1. I have felt alone or isolated from others | − .10 | .37 | .68 | .29 | .15 | .72 |
B2. I have avoided socialising more than I used to | .04 | .47 | .66 | .20 | .17 | .73 |
B3. I have felt embarrassed in social situations | − .07 | .33 | .75 | .13 | .05 | .70 |
B4. I have felt that I am no longer close to anyone | − .01 | .30 | .63 | .22 | .12 | .55 |
B5. I have felt anxious in social situations | .03 | .35 | .70 | .26 | .11 | .69 |
Factor-4: Personal wellbeing | ||||||
A1. I have experienced feelings of anxiety | − .12 | .20 | .19 | .68 | .20 | .60 |
A2. I have experienced feelings of low mood or depression | − .10 | .29 | .24 | .88 | .16 | .95 |
A3. I have felt hopeless about the future | − .16 | .26 | .29 | .72 | .16 | .71 |
A4. I have had poor or disrupted sleep | − .06 | .33 | .26 | .46 | .12 | .40 |
Factor-5: Sexual wellbeing | ||||||
D1. I have avoided sexual activity to minimise the risk of developing or worsening UTI symptoms | − .07 | .06 | .12 | .12 | .69 | .52 |
D2. I have felt unable to enjoy sexual activity due to my UTI(s) | − .05 | .20 | .09 | .15 | .63 | .47 |
D3. I have been concerned about the impact of my UTI(s) on my sex life and/or sexual relationship(s) | − .05 | .07 | .02 | .07 | .79 | .64 |
D4. I have felt that my UTI(s) have made my sexual wellbeing worse | .00 | .03 | .10 | .09 | .76 | .60 |
Section/item number | Instruction/item |
---|---|
Section A: Personal wellbeing | The following questions are about the impact of your UTI(s) on your personal wellbeing Thinking about how you have felt in the past TWO WEEKS, please indicate how strongly you agree or disagree with the following statements: Because of my UTI(s)… |
A1 | I have experienced feelings of anxiety |
A2 | I have experienced feelings of low mood or depression |
A3 | I have felt hopeless about the future |
A4 | I have had poor or disrupted sleep |
Section B: Social wellbeing | The following questions are about the social impact of your UTI(s) Thinking about how you have felt in the past TWO WEEKS, please indicate how strongly you agree or disagree with the following statements: Because of my UTI(s)… |
B1 | I have felt alone or isolated from others |
B2 | I have avoided socialising more than I used to |
B3 | I have felt embarrassed in social situations |
B4 | I have felt that I am no longer close to anyone |
B5 | I have felt anxious in social situations |
Section C: Work and activity interference | The following questions are about the impact of your UTI(s) on your work and/or regular daily activities. Please consider the term “work” to include paid employment, volunteering, home management, caring responsibilities, and/or studying Thinking about how you have felt in the past TWO WEEKS, please indicate how strongly you agree or disagree with the following statements: Because of my UTI(s)… |
C1 | I regularly missed full or partial days of work, home responsibilities or studying |
C2 | My ability to work was impaired |
C3 | I regularly put pressure on myself to work despite feeling unwell |
C4 | The kind or amount of work I could do was limited |
C5 | It was more difficult than usual to concentrate on my work |
C6 | I have felt that the quality of my work was lower than usual |
C7 | It was more difficult than usual to handle my workload |
Section D: Sexual wellbeinga | The following questions are about the sexual impact of your UTI(s) |
Do you feel your UTI(s) has/have impacted your sex life in the past two weeks? | |
If you selected “No” or “Prefer not to say”, please skip to Section E. If you selected “Yes”, please continue with the rest of Section D Thinking about how you have felt in the past TWO WEEKS, please indicate how strongly you agree or disagree with the following statements: | |
D1 | I have avoided sexual activity to minimise risk of developing or worsening UTI symptoms |
D2 | I have felt unable to enjoy sexual activity due to my UTI(s) |
D3 | I have been concerned about the impact of my UTI(s) on my sex life and/or sexual relationship(s) |
D4 | I have felt that my UTI(s) have made my sexual wellbeing worse |
Section E: Patient satisfaction | The following questions are about your feelings of satisfaction with your UTI-related medical care Thinking about how you have felt in the past TWO WEEKS, please indicate how strongly you agree or disagree with the following statements about your UTI-related medical care: |
E1 | I have generally felt content with the medical care I have been receiving |
E2 | I have felt confident about being able to get the medical care I need |
E3 | I have felt like my medical concerns are taken seriously |
E4 | I have had confidence in the decisions made about my care and treatment |
E5 | I have felt confident about being able to access UTI testing and treatment quickly enough |
E6 | I have felt listened to by my healthcare provider(s) |
E7 | I have had easy access to the medical specialists I need |
E8 | I have felt like my healthcare provider(s) treat me with respect and dignity |
E9 | I have been as involved as I have wanted to be in the decisions made about my care and treatment |
E10 | I have trusted my healthcare provider(s) |
Descriptive statistics and psychometric properties
Statistic | RUTIIQ subscale | ||||
---|---|---|---|---|---|
Personal wellbeing | Social wellbeing | Work and activity interference | Sexual wellbeing | Patient satisfaction | |
Descriptive statistics | |||||
M | 26.2 | 23.3 | 35.8 | 36.2 | 36.6 |
SD | 11.1 | 15.9 | 23.1 | 6.3 | 28.5 |
Range | 0–40 | 0–50 | 0–70 | 5–40 | 0–100 |
Cronbach’s α | .87 | .91 | .95 | .81 | .96 |
ICC | .82 | .89 | .83 | .66 | .91 |
95% CI: LB | .75 | .84 | .75 | .51 | .87 |
95% CI: UB | .87 | .92 | .88 | .78 | .94 |
Spearman’s ρ | |||||
PHQ-9 | .70** | .69** | .61** | .25** | .26** |
GAD-7 | .60** | .57** | .46** | .18* | .26** |
UCLA-LS | .34** | .53** | .33** | .02 | .16* |
WPAI:SHP (work domain) | .49** | .61** | .73** | .26** | .28** |
WPAI:SHP (activity domain) | .51** | .57** | .70** | .27** | .23** |
FSDS-R | .43** | .43** | .34** | .38** | .28** |
PSQ-18 | − .25** | − .28** | − .35** | − .04 | − .76** |