Table 2 Associations between overall care experience and selected variables

Section 1: Demographics

Age of patient

Kendall's Tau-b—τb = 0.026

953

p = 0.31

No evidence of association

Child/Adult indicator

Kendall's Tau-b—τb = -0.018

953

p = 0.53

No evidence of association

Sex of patient

Kendall's Tau-b—τb = 0.092

945

p < 0.05

Males have a more positive overall care rating than females

Respondent’s location (UK Nation)

Chi-squared—χ² = 9.883

939

p = 0.27

No evidence of association

Patient's ability to work affected

Kendall's Tau-b—τb = -0.235

707

p < .001

Those not affected have a more positive overall care rating than those affected

Patient's ability to study affected

Kendall's Tau-b—τb = -0.214

504

p < .001

Those not affected have a more positive overall care rating than those affected

Section 2: About the rare/undiagnosed condition

Count of number of aspects of health mentioned

Kruskal–Wallis test = 72.56

955

p < .001

Those with fewer aspects of health affected have a more positive overall care rating than those with more aspects of health affected

Condition Complexity (Grouped count of number of aspects of health mentioned)

Kendall's Tau-b—τb = -0.214

955

p < .001

Those with fewer aspects of health affected have a more positive overall care rating than those with more aspects of health affected

Whether or not diagnosed

Kendall's Tau-b—τb = 0.12

930

p < .001

Those with a diagnosis have a more positive overall care rating than those who are undiagnosed

Number of years since diagnosis

Kendall's Tau-b—τb = 0.11

825

p < .001

Those diagnosed a longer time ago have a more positive overall care rating than those diagnosed more recently

Section 3: Diagnosis

Whether have been misdiagnosed

Kendall's Tau-b—τb = -0.262

870

p < .001

Those who have not experienced misdiagnosis have a more positive overall care rating than those who have had a misdiagnosis

Number of times misdiagnosed

Kendall's Tau-b—τb = -0.239

410

p < .001

Those with fewer misdiagnoses have a more positive overall care experience than those with more misdiagnoses

Length of wait for definitive diagnosis

Kendall's Tau-b—τb = -0.292

776

p < .001

Those with a shorter wait for a definitive diagnosis have a more positive overall care rating

Which healthcare professional made the diagnosis

Chi-squared—χ² = 25.11

841

p = 0.07

No evidence of association

Experience of searching for a diagnosis

Kendall's Tau-b—τb = 0.458

943

p < .001

Those with a more positive experience of searching for a diagnosis have a more positive overall care rating

Section 4: Information, awareness and the patient voice

Satisfaction with information provided—before diagnosis

Kendall's Tau-b—τb = 0.363

851

p < .001

Those who are more satisfied have a more positive overall care rating

Satisfaction with information provided—at diagnosis

Kendall's Tau-b—τb = 0.385

849

p < .001

Those who are more satisfied have a more positive overall care rating

Satisfaction with information provided—following diagnosis

Kendall's Tau-b—τb = 0.554

851

p < .001

Those who are more satisfied have a more positive overall care rating

Agreement with statement ' I have sufficient information about condition'

Kendall's Tau-b—τb = 0.335

952

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Is there a specific heath care professional to contact about the condition?

Kendall's Tau-b—τb = 0.491

884

p < .001

Those who had a specific healthcare professional to contact had a more positive overall care rating

If there is a specific healthcare professional to contact, how easy is it to contact them

Kendall's Tau-b—τb = 0.388

531

p < .001

Those who found it easier to contact the specific healthcare professional had a more positive overall care experience

Involved in decision about treatment?

Kendall's Tau-b—τb = 0.291

889

p < .001

Those who were involved in decisions about treatment had a more positive overall care experience

Whether or not have an alert card

Kendall's Tau-b—τb = 0.156

935

p < .001

Those who had an alert card had a more positive overall care experience

Trust and confidence in Hospital staff

Kendall's Tau-b—τb = 0.598

879

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Trust and confidence in GP staff

Kendall's Tau-b—τb = 0.265

918

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Trust and confidence in ED staff and Paramedics

Kendall's Tau-b—τb = 0.288

761

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Trust and confidence in Social care staff

Kendall's Tau-b—τb = 0.352

562

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Hospital staff are sufficiently informed about condition

Kendall's Tau-b—τb = 0.466

871

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

GP staff are sufficiently informed about condition

Kendall's Tau-b—τb = 0.285

908

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Paramedics are sufficiently informed about condition

Kendall's Tau-b—τb = 0.291

755

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Social care staff are sufficiently informed about condition

Kendall's Tau-b—τb = 0.322

577

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Section 5: Coordination of care

Number of times had contact with Health Service (Grouped)

Kendall's Tau-b—τb = 0.027

868

p = 0.32

No evidence of association

Number of different clinics attend

Kendall's Tau-b—τb = 0.150

943

p < .001

Those who attend more clinics have a more positive overall care experience than those who attend fewer clinics

Time to travel to furthest clinic

Kendall's Tau-b—τb =− 0.004

803

p = 0.88

No evidence of association

Who coordinates care?

Chi-squared—χ² = 89.168

909

p < .001

Those who have a dedicated coordinator/or shared responsibility have a more positive overall care experience than those who do their own care-coordination

Whether have a care plan

Kendall's Tau-b—τb = 0.121

875

p < .001

Those who have a care plan had a more positive overall care experience

Feel that care is coordinated effectively

Kendall's Tau-b—τb = 0.567

753

p < .001

Those who feel care is coordinated effectively have a more positive overall care experience than those who do not feel care is effectively coordinated

Agreement with: The professionals providing care work as a team

Kendall's Tau-b—τb = 0.549

825

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Agreement with: The timing and frequency of appointments are convenient

Kendall's Tau-b—τb = 0.472

848

p < .001

Those who agreed more strongly with the statement have a more positive overall care rating

Agreement with: Would prefer more appointments to be provided locally

Kendall's Tau-b—τb = − 0.186

746

p < .001

Those who agreed less strongly with the statement have a more positive overall care rating

Section 6: Access to specialist care and treatments

Do they have a doctor who is an expert?

Kendall's Tau-b—τb = 0.464

880

p < .001

Those who have a doctor who is an expert have a more positive overall care rating than those who do not have an expert doctor

Whether there is a specialist centre (Yes/No/unsure)

Chi-squared—χ² = 74.008

955

p < .001

Those who were aware that there was a specialist centre for their condition had a more positive overall care experience than those who were not aware of a specialist centre

If so whether they access the specialist centre

Kendall's Tau-b—τb = 0.486

439

p < .001

Those who accessed a specialist centre had a more positive care experience than those who did not

Section 9: Overall care

Changes in quality of care in past 5 years (it has got worse, it has stayed the same, it has improved)

Kendall's Tau-b—τb = 0.260

818

p < .001

Those who had a better quality of care had a more positive care experience than those who had a worse quality of care