Background
Methods
Patient cohort and study protocol
Study instruments
The SWAL-CARE
The quality from the patient’s perspective (QPP)
The SWAL-QOL
Study-specific questions
Statistical analyses and psychometric testing
Reliability and reproducibility
Validity
Ethics, consent and permissions
Results
Patient characteristics
Variable | N = 100 |
---|---|
Age, years (median/range) | 70 (23–95) |
n (%) | |
Age categories | |
18–55 years | 19 (19) |
> 55–70 years | 33 (33) |
> 70–85 years | 43 (43) |
> 85 years | 5 (5) |
Gender | |
Male | 56 (56) |
Female | 44 (44) |
Marital status | |
Single | 28 (28) |
Married/cohabitant | 70 (70) |
Partnership but living apart | 2 (2) |
Education level | |
Elementary school | 31 (31) |
High school | 24 (24) |
University up to 4 years | 24 (24) |
University > 4 years | 21 (21) |
Working status | |
Retired | 62 (62) |
Unemployed | 6 (6) |
Yes, fulltime | 14 (14) |
Yes, part time | 18 (18) |
Smoking status | |
Never smoked | 38 (38) |
Previous smoker | 54 (54) |
Current smoker | 8 (8) |
Primary cause of dysphagia | |
Cancer | 28 (28) |
Vascular disease (i.e. stroke) | 3 (3) |
Neurologic or neuromuscular disease | 43 (43) |
Other cause | 26 (26) |
Swallowing examination carried out | |
Fiberscopic evaluation of swallowing | 81 (81) |
Videofluoroscopy | 9 (9) |
Clinical swallowing examination | 10 (10) |
Eating difficulties | 55 (55) |
Drinking difficulties | 44 (44) |
Swallowing difficulties | 74 (74) |
Coughing when eating/drinking | 62 (62) |
Body Mass Index (BMI) kg/m2 (median/range) | 24.2 (16.7–35.8) |
Feasibility
Reliability and reproducibility
Domain | Item | Abbreviation used in tables |
---|---|---|
Clinical advice | 1. Foods I should eat | Foodeat |
2. Foods I should avoid | Foodavoid | |
3. Liquids I should drink | Liqdrink | |
4. Liquids I should avoid | Liqavoid | |
5. Techniques to help me get food down | Fooddown | |
6. Techniques to help me avoid choking | Avoidchk | |
General advice | 7. When I should contact a swallowing clinician | Contact |
8. Goals of the treatment for my swallowing problem | Goals | |
9. My treatment options | Options | |
10. What to do if I start to choke | Dochoke | |
11. Signs that I am not getting enough to eat or drink | Signs | |
Patient satisfaction | 12. You had confidence in your swallowing clinicians | Confid |
13. Your swallowing clinicians explained everything about your treatment to you | Explain | |
14. Your swallowing clinicians spent enough time with you | Clintime | |
15. Your swallowing clinicians put your needs first | Myneeds |
S-SWAL-CARE domain | Item label | Correlation with its domain | Cronbach’s alpha |
---|---|---|---|
Clinical advice domain | 1. Foodeat | 0.85 | 0.92 |
2. Foodavoid | 0.87 | ||
3. Liqdrink | 0.85 | ||
4. Liqavoid | 0.86 | ||
5. Fooddown | 0.83 | ||
6. Avoidchk | 0.86 | ||
General advice domain | 7. Contact | 0.88 | 0.90 |
8. Goals | 0.87 | ||
9. Options | 0.81 | ||
10. Dochoke | 0.84 | ||
11. Signs | 0.85 | ||
Patient satisfaction domain | 12. Confid | 0.91 | 0.94 |
13. Explain | 0.92 | ||
14. Clintime | 0.95 | ||
15. Myneeds | 0.93 |
SWAL-CARE item/domain | Clinical advice domain | General advice domain | Patient satisfaction domain |
---|---|---|---|
r (95% CI) | r (95% CI) | r (95% CI) | |
1. Food eat | r = 0.79 (0.68–0.86) | r = 0.67 (0.50–0.79) | r = 0.33 (0.12–0.51) |
p = < 0.0001 | p = < 0.0001 | p = 0.0024 | |
2. Food avoid | r = 0.81 (0.72–0.88) | r = 0.66 (0.48–0.79) | r = 0.37 (0.15–0.55) |
p = < 0.0001 | p = < 0.0001 | p = 0.0014 | |
3. Liqdrink | r = 0.82 (0.73–0.88) | r = 0.74 (0.60–0.84) | r = 0.38 (0.17–0.56) |
p = < 0.0001 | p = < 0.0001 | p = 0.0007 | |
4. Liqavoid | r = 0.86 (0.78–0.91) | r = 0.74 (0.58–0.84) | r = 0.39 (0.16–0.58) |
p = < 0.0001 | p = < 0.0001 | p = 0.0012 | |
5. Fooddown | r = 0.83 (0.75–0.89) | r = 0.73 (0.59–0.83) | r = 0.39 (0.18–0.57) |
p = < 0.0001 | p = < 0.0001 | p = 0.0004 | |
6. Avoidchk | r = 0.85 (0.77–0.90) | r = 0.72 (0.56–0.82) | r = 0.38 (0.17–0.56) |
p = < 0.0001 | p = < 0.0001 | p = 0.0006 | |
7. Contact | r = 0.72 (0.56–0.83) | r = 0.88 (0.80–0.93) | r = 0.49 (0.25–0.67) |
p = < 0.0001 | p = < 0.0001 | p = 0.0001 | |
8. Goals | r = 0.74 (0.61–0.83) | r = 0.85 (0.76–0.91) | r = 0.49 (0.28–0.65) |
p = < 0.0001 | p = < 0.0001 | p = < 0.0001 | |
9. Options | r = 0.68 (0.51–0.80) | r = 0.81 (0.69–0.89) | r = 0.32 (0.07–0.53) |
p = < 0.0001 | p = < 0.0001 | p = 0.014 | |
10. Dochoke | r = 0.65 (0.47–0.78) | r = 0.81 (0.70–0.89) | r = 0.41 (0.18–0.60) |
p = < 0.0001 | p = < 0.0001 | p = 0.0009 | |
11. Signs | r = 0.69 (0.54–0.81) | r = 0.84 (0.73–0.90) | r = 0.49 (0.27–0.66) |
p = < 0.0001 | p = < 0.0001 | p = < 0.0001 | |
12. Confid | r = 0.39 (0.19–0.56) | r = 0.46 (0.23–0.65) | r = 0.90 (0.86–0.94) |
p = 0.0003 | p = 0.0002 | p = < .0001 | |
13. Explain | r = 0.40 (0.19–0.57) | r = 0.42 (0.17–0.61) | r = 0.91 (0.87–0.94) |
p = 0.0003 | p = 0.0012 | p = < 0.0001 | |
14. Clintime | r = 0.35 (0.14–0.53) | r = 0.38 (0.14–0.58) | r = 0.95 (0.92–0.96) |
p = 0.0015 | p = 0.0027 | p = < 0.0001 | |
15. Myneeds | r = 0.44 (0.24–0.60) | r = 0.48 (0.25–0.66) | r = 0.93 (0.90–0.96) |
p = < 0.0001 | p = 0.0001 | p = < 0.0001 | |
n = 79 | n = 57 | n = 92 | |
Clinical advice domain (items 1–6) | r = 0.83 (0.73–0.90) | r = 0.42 (0.23–0.59) | |
p = < 0.0001 | p = < 0.0001 | ||
n = 59 | n = 80 | ||
General advice domain (items 7–11) | r = 0.83 (0.73–0.90) | r = 0.49 (0.27–0.67) | |
p = < 0.0001 | p = < 0.0001 | ||
n = 59 | n = 58 | ||
Satisfaction domain (items 12–15) | r = 0.42 (0.23–0.59) | r = 0.49 (0.27–0.67) | |
p = < .0001 | p = < .0001 | ||
n = 80 | n = 58 | ||
Scaling successa | 5/6 (83.3%) | 5/5 (100%) | 4/4 (100%) |
Validity
S-SWAL-CARE domain | Medical-technical competence (PR) | Physical-technical condition (PR) | Identity-related approach (PR) | Socio-cultural atmosphere (PR) | SWAL-QOL total score |
---|---|---|---|---|---|
QPP domains | |||||
Clinical advice domain | r = 0.35 | r = 0.21 | r = 0.32 | r = 0.32 | r = 0.26 |
p = 0.001 | p = 0.160 | p = 0.003 | p = 0.004 | p = 0.023 | |
General advice domain | r = 0.46 | r = 0.35 | r = 0.44 | r = 0.49 | r = 0.20 |
p = < 0.001 | p = 0.051 | p = < 0.001 | p = < 0.001 | p = 0.130 | |
Patient satisfaction domain | r = 0.49 | r = 0.53 | r = 0.64 | r = 0.52 | r = 0.27 |
p = < 0.001 | p = < 0.001 | p = < 0.001 | p = < 0.001 | p = 0.010 |
S-SWAL-CARE | No. items | No. levels | Range | Median (IQR) | Mean (SD) | Floor n (%) | Ceiling n (%) | Response “Did not receive any advice” n (%) | Missing n (%) |
---|---|---|---|---|---|---|---|---|---|
1. Foodeat | NA | 6 | 1–6 | 3 (3–4) | 3.3 (0.9) | 1 (1.2) | 2 (2.4) | 15 (15) | 2 (2) |
2. Foodavoid | NA | 6 | 1–6 | 3 (3–4) | 3.3 (1.0) | 2 (2.6) | 2 (2.6) | 21 (21) | 3 (3) |
3. Liqdrink | NA | 6 | 1–6 | 4 (3–4) | 3.7 (1.0) | 1 (1.3) | 4 (5.2) | 19 (19) | 4 (4) |
4. Liqavoid | NA | 6 | 1–6 | 3 (2–4) | 3.3 (1.1) | 1 (1.5) | 3 (4.5) | 28 (28) | 5 (5) |
5. Fooddown | NA | 6 | 1–6 | 3 (3–4) | 3.5 (1.2) | 1 (1.3) | 6 (7.5) | 18 (18) | 2 (2) |
6. Avoidchk | NA | 6 | 1–6 | 3 (3–4) | 3.5 (1.2) | 4 (5.1) | 6 (7.6) | 19 (19) | 2 (2) |
7. Contact | NA | 6 | 1–6 | 3 (2–4) | 3.0 (1.3) | 6 (10.7) | 3 (5.4) | 40 (40) | 4 (4) |
8. Goals | NA | 6 | 1–6 | 3 (3–4) | 3.3 (1.2) | 4 (5.6) | 1 (1.4) | 25 (25) | 3 (3) |
9. Options | NA | 6 | 1–6 | 3 (2–4) | 3.0 (1.2) | 6 (9.8) | 1 (1.6) | 36 (36) | 3 (3) |
10. Dochoke | NA | 6 | 1–6 | 3 (2–4) | 2.9 (1.4) | 9 (14.5) | 3 (4.8) | 36 (36) | 2 (2) |
11. Signs | NA | 6 | 1–6 | 3 (2–4) | 3.1 (1.4) | 8 (12.9) | 4 (6.5) | 34 (34) | 4 (4) |
12. Confid | NA | 4 | 1–4 | 3 (2–4) | 3.0 (1.0) | 6 (6.5) | 40 (43.0) | NA | 7 (7) |
13. Explain | NA | 4 | 1–4 | 3 (2–4) | 3.0 (1.1) | 12 (13.2) | 37 (40.7) | NA | 9 (9) |
14. Clintime | NA | 4 | 1–4 | 4 (2–4) | 3.2 (1.0) | 9 (9.7) | 49 (52.7) | NA | 7 (7) |
15. Myneeds | NA | 4 | 1–4 | 4 (3–4) | 3.3 (1.0) | 6 (6.5) | 51 (55.4) | NA | 8 (8) |
Clinical advice domain | 6 | NA | 3–100 | 47 (40–60) | 48.3 (17.7) | 1 (1.2) | 2 (2.4) | NA | NA |
General advice domain | 5 | NA | 0–100 | 40 (26–53) | 41.8 (21.7) | 2 (3.3) | 1 (1.7) | NA | NA |
Patient satisfaction domain | 4 | NA | 0–100 | 83 (50–100) | 70.2 (31.2) | 5 (5.3) | 28 (29.8) | NA | NA |