“It´s incredible how much I´ve had to fight.” Negotiating medical uncertainty in clinical encounters

Figures & data

Table I. Responders versus non-responders—sociodemographic and health characteristics.

Variable	Respondents who wrote free-text comments (N=256) (Number/percent)	Respondents who did not write free-text comments (N=210) (Number/percent)	P-value
Gender	256 (100 %)	210 (100 %)	0.55*
- Women	230 (90 %)	185
- Men	26 (10 %)	25
Age (years)	256 (100 %)	210 (100 %)	0.12^+
- Range	16 to 72	17 to 73
- Median	47	45
Education	256 (100 %)	194 (92 %)	0.19^
- Primary school	8 %	8 %
- High school	29 %	35 %
- Undergraduate	38 %	41 %
- Post-graduate	25 %	16 %
- Median value	Undergraduate	Undergraduate
General health	256 (100 %)	194 (92 %)	0.25^+
- Very good	1 %	1 %
- Good	9 %	10 %
- Neither good/poor	19 %	23 %
- Poor	52 %	52 %
- Very poor	19 %	14 %
- Median value	Poor	Poor
Severity of ME	254 (99 %)	194 (92 %)	0.23^+
- Mild	19 %	23 %
- Moderate	70 %	68 %
- Severe	10 %	8 %
- Very severe	1 %	1 %
- Median value	Moderate	Moderate
Age of illness onset (years)	245 (96 %)	205 (98 %)	0.19^+
- Range	10 to 61	11 to 62
- Median	35	33
Diagnosis (multiple responses)	256 (100 %)	210 (100 %)
- ME	77 %	78 %	0.32*
- CFS	8 %	6 %	0.61*
- PVFS	15 %	16 %	0.72*
Changed GP last 12 months	255 (99 %)	200 (95 %)	0.32*
- Yes	25 %	21 %
- No	75 %	79 %
Time with current GP if not changed last 12 months (years)	187 (98 % of those eligible)	155 (98 % of those eligible)	0.13^+
- Range	1 to 35	1 to 35
- Median	6.5	10.5
Number of health visits last 12 months for ME	237 (93 %)	180 (86 %)	0.29^+
- Range	0 to 50	0 to 25
- Median	4	4
Private health utilization last 12 months for ME	231 (90 %)	181 (86 %)	0.54*
- Yes	38 %	35 %
- No	62 %	65 %

* Fisher´s Exact Test (2-tailed)

^ Fisher´s Exact Test Freeman-Halton Extension (2-tailed)

⁺ Mann-Whitney U Test (2-tailed)

Table II. Responders versus non-responders: GP satisfaction

Variable	Respondents who wrote free-text comments (N=256) (Number/percent)	Respondents who did not wrote free-text comments (N=210) (Number/percent)	P-value
Degree of satisfaction with initial help from GPs (for ME) - To a large extent - To some extent - To a little extent - Not at all	255 (99 %) 18 % 22 % 32 % 29 %	204 (97 %) 23 % 33 % 25 % 19 %	0.01^+
Degree of satisfaction with help from current GP (for ME) * - To a large extent - To some extent - To a little extent - Not at all	240 (94 %) 20 % 54 % 23 % 3 %	185 (88 %) 25 % 57 % 15 % 3 %	0.07^+
Satisfaction with initial versus current help (correlation) - Wilcoxon Signed-Rank Test (2-tailed) - Spearman correlation coefficient	240 (94 %) <0.001 0.30 (<0.001)	185 (88 %) <0.001 0.32 (<0.001)

⁺ Mann-Whitney U Test (2-tailed)

* Proxy measure; median result of seven combined measures that used the same (4 point) Likert scale: In relation to ME/CFS/PVFS, in the last 12 months has your current GP 1) taken you and your issues seriously, 2) respected what is important to you as a patient, 3) shown a mutual understanding of your illness, 4) listened closely to what you have to say, 5) sought approval for decision making, 6) provided advice for problems, and 7) provided understandable information?