Table 3.
Reported care experience by agreement per item, ranked
| Item | Statement | Agreement (frequency “Strongly Agree” + “Agree”/Total), n | % |
|---|---|---|---|
| 1a | Whenever I attended a clinic, I felt that I was treated respectfully as an individual | 1063/1193 | 89% |
| 1d | I was given information in a way that I could understand (eg. explained clearly or written down, in the right language for me) | 1007/1190 | 85% |
| 1b | I was involved as much as I wanted to be in decisions about treatment and care (eg. my medications, tests and investigations) | 974/1192 | 82% |
| 3a | I feel that I was given information at the time I needed it | 928/1194 | 78% |
| 1e | I was given enough information to help me make decisions about my treatment | 927/1190 | 78% |
| 3b | I feel that I have a good understanding of the treatments I am on or being offered (eg. medications, physical therapy) | 917/1191 | 77% |
| 8 | Overall in the past year, I had had a good experience of care for my condition | 924/1194 | 77% |
| 6 | I feel able to take a family member or support person to outpatient appointments if I want to | 892/1194 | 75% |
| 7a | At appointments, I feel that I have enough time with the healthcare professional to cover everything I want to discuss | 909/1194 | 76% |
| 2d | I feel that the people I see at the clinic are fully up to date with my current health situation | 869/1191 | 73% |
| 1c | My personal circumstances and preferences (eg. work or study, finances, family and carer duties, social life) were taken into account when planning and deciding on my treatment and care | 833/1192 | 70% |
| 4a | I feel that my condition and symptoms are being controlled enough to let me get on with my daily life and usual activities | 763/1193 | 64% |
| 2a | I was made aware that there is a team of health professionals looking after me, (eg. specialist doctor, GP, and may also include specialist nurses, physiotherapists, podiatrists [foot experts], occupational therapists [to assess mobility, functioning at home, and remaining active]) | 790/1191 | 63% |
| 5a | I feel able to approach a member of my health team to discuss any worries about my condition and my treatment or their effect on my life | 707/1194 | 59% |
| 2c | There is a member of my health team who can help me to see other healthcare professionals in the team when needed (eg. referrals to other medical or surgical specialists, or physiotherapists, podiatrists, occupational therapists) | 679/1190 | 57% |
| 2b | When I needed help I was able to access different members of my health team | 641/1194 | 54% |
| 5b | I feel able to discuss personal or intimate issues about relationships with my health team if I want to | 605/1192 | 51% |
| 4b | If I have had a “flare” (when my symptoms get much worse), I have been able to get help quickly | 506/1193 | 42% |
| 3c | I have been told about patient organisations or patient support groups that can help me | 401/1190 | 34% |
| 3d | I have been offered an opportunity to attend a self-management or education program about my condition | 241/1190 | 20% |