Table 4.
Delphi round 2, level of importance of pain care priorities as rated by people living with chronic pain and carers and health professionals expressed as median (IQR) and proportion of panel responses in the corresponding median band.
| Category 1: Validating, acknowledging, and respecting each individual's pain experience (5 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 167) | Health professionals (n = 267) | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 1.1. Acknowledge and believe that my pain is real—do not be dismissive about my pain story or tell me it is all in my head | 9 (0) | 156 (93.4) | 9 (0) | 264 (98.9) |
| 1.2. Acknowledge my feelings and my experiences, particularly how my pain impacts my physical, social, and mental well-being | 9 (1) | 151 (90.4) | 9 (1) | 262 (98.1) |
| 1.3. Show empathy about my pain and situation | 9 (2) | 138 (82.6) | 9 (1) | 255 (95.5) |
| 1.4. Trust or believe what I am telling you about my pain, current pain levels or ratings, my symptoms, my history, and my experiences | 9 (0) | 156 (93.4) | 9 (1) | 258 (96.6) |
| 1.5. Respect my knowledge of my own body and experiences | 9 (1) | 153 (91.6) | 9 (1) | 245 (91.8) |
| Category 2: Communication styles to ensure safe, respectful, and effective communication between health professionals and individuals (13 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 165)* | Health professionals (n = 249)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 2.1. Ask me questions to understand my history and relationship with pain prior to the onset of chronic pain | 8 (2) | 137 (83.0) | 8 (2) | 210 (84.3) |
| 2.2. Ask me questions about my pain to understand how it impacts my life | 9 (1) | 151 (91.5) | 9 (1) | 240 (96.4) |
| 2.3. Be encouraging and provide hope where possible about managing my pain | 8 (2) | 133 (80.6) | 9 (1) | 237 (95.2) |
| 2.4. Be honest with me if you don't have an answer or if you can't provide a diagnosis or find a specific reason for my pain | 9 (1) | 155 (93.9) | 9 (1) | 241 (96.8) |
| 2.5. Be open minded to potential causes of my pain rather than trying to categorise me or attribute it to my weight or gender | 9 (1) | 147 (89.1) | 9 (1) | 237 (95.2) |
| 2.6. Create a consultation space where I feel safe and respected to share details about my pain and not feel judged or dismissed | 9 (1) | 146 (88.5) | 9 (1) | 237 (95.2) |
| 2.7. Listen to me, learn from me, and hear what I am telling you, so it makes me feel that my concerns have been understood | 9 (2) | 153 (92.7) | 9 (1) | 245 (98.4) |
| 2.8. Do n't rush me in a consultation—it takes a lot of effort to come to an appointment | 9 (2) | 136 (82.4) | 8 (2) | 227 (91.2) |
| 2.9. Provide me with specific, accurate, and meaningful answers or explanations about my chronic pain using words or terms that won't alarm me. | 8 (2) | 131 (79.4) | 9 (1) | 235 (94.4) |
| 2.10. Take time to explain a new diagnosis or test results using simple language so I can understand | 8 (2) | 135 (81.8) | 9 (1) | 239 (96.0) |
| 2.11. Communicate with me or follow-up with me outside of consultations when needed | 8 (2) | 129 (78.2) | 8 (2) | 190 (76.3) |
| 2.12. Help my partner or carer or family members to understand more about my chronic pain and how best to support me | 7 (3) | 103 (62.4) | 8 (2) | 213 (85.5) |
| 2.13. Provide documents or information (eg, medical certificate, letters) for my school, workplace, or insurance company | 8 (3) | 122 (73.9) | 8 (2) | 188 (75.5) |
| Category 3: Multidisciplinary team approach (3 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 167) | Health professionals (n = 246)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 3.1. Coordinate my healthcare needs by communicating and working with other health professionals, insurers, and others to ensure I get the right treatment or care | 9 (2) | 142 (85.0) | 8 (2) | 222 (90.2) |
| 3.2. Provide timely on-referrals to support my pain management, functional ability, or activities of daily living including allied health and specialists, when needed | 9 (2) | 143 (85.6) | 8 (2) | 227 (92.3) |
| 3.3. Refer me to receive appropriate support services including for my mental health | 9 (2) | 133 (79.6) | 9 (1) | 227 (92.3) |
| Category 4: Holistic approach to care (6 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 164)* | Health professionals (n = 244)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 4.1. Treat me as a whole person to help me to manage my pain condition(s) as well as other health issues that I live with | 9 (1) | 153 (93.3) | 9 (1) | 235 (96.3) |
| 4.2. Provide a holistic approach to my care that is tailored and looks after my physical, mental, occupational, social, spiritual, and intellectual needs | 9 (2) | 139 (84.8) | 9 (10) | 231 (94.7) |
| 4.3. Help me to prevent further joint damage from arthritis | 8 (4) | 106 (64.6) | 7 (2) | 156 (63.9) |
| 4.4. Take a proactive approach to my pain care including education on diet and exercise | 8 (3) | 113 (68.9) | 8 (2) | 214 (87.7) |
| 4.5. Understand that chronic pain can be complex and include different types of pain or multiple pain problems | 9 (1) | 153 (93.3) | 9 (1) | 235 (96.3) |
| Category 5: Ensuring genuine partnership approaches with me for my pain care (13 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 162)* | Health professionals (n = 234)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 5.1. Ask me questions about my pain to understand what my needs or goals or priorities are and how I want to deal with my pain | 9 (1) | 145 (89.5) | 9 (1) | 228 (97.4) |
| 5.2. Be sensitive to my financial circumstances including compensation or insurance when considering treatment or management options | 8 (3) | 121 (74.7) | 8 (2) | 207 (88.5) |
| 5.3. Explain the pain management options available to me, including possible risks (eg, side effects) and benefits, in a way that I can understand and make informed choices | 9 (1) | 148 (91.4) | 9 (1) | 225 (96.2) |
| 5.4. Give me a range of pain management or treatment options as soon as possible—with and without medication | 9 (1) | 145 (89.5) | 8 (1) | 216 (92.3) |
| 5.5. Help me to manage or reduce my pain so I can function, participate in day-to-day activities (ie, work, social, family, exercise, etc) as independently as possible and improve my quality of life | 9 (1) | 149 (92.0) | 9 (1) | 227 (97.0) |
| 5.6. Help and support me when I have a pain flare-up | 9 (1.25) | 144 (88.9) | 9 (1) | 216 (92.3) |
| 5.7. Involve me as an equal partner in actively making decisions or plans about my care or treatment options and ensure my preferences are included | 9 (1) | 148 (91.4) | 9 (1) | 227 (97.0) |
| 5.8. Offer me the best treatment options for my condition regardless of my age | 9 (1) | 144 (88.9) | 9 (1) | 217 (92.7) |
| 5.9. Develop a pain management plan with me that caters to my individual needs, and regularly review and adjust if some options don't work | 9 (1) | 149 (92.0) | 9 (1) | 219 (93.6) |
| 5.10. Be flexible with treatment and care plans given limited access to health professionals and costs for those living in regional or rural areas | 8.5 (2) | 127 (78.4) | 9 (1) | 218 (93.2) |
| 5.11. Listen and accept when I tell you I have tried suggested treatment options and they haven't worked for me | 9 (1) | 148 (91.4) | 9 (1) | 221 (94.4) |
| 5.12. Offer me evidence-based treatments and strategies, including new or latest therapies | 9 (1) | 145 (89.5) | 9 (1) | 218 (93.2) |
| 5.13. Support me in my decisions to use more natural ways to manage my pain (ie, not just medications) | 8 (2) | 132 (81.5) | 9 (1) | 219 (93.6) |
| Category 6: Knowledge and experience of health professionals (2 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 165)* | Health professionals (n = 232)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 6.1. Be knowledgeable about the different types of pain and why my pain is persisting | 9 (1) | 149 (90.3) | 9 (1) | 223 (96.1) |
| 6.2. Be willing to undertake research to learn or better understand my condition(s) when you don't have the knowledge | 9 (1) | 150 (90.9) | 9 (1) | 221 (95.3) |
| Category 7: Supporting my self-management (2 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 166)* | Health professionals (n = 230)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 7.1. Be able to direct me to evidence-based pain management resources, give me practical strategies and basic information to guide and support self-management of my pain | 8 (2) | 142 (85.5) | 9 (1) | 224 (97.4) |
| 7.2. Be able to direct me to patient support and advocacy groups | 7 (3) | 93 (56.0) | 8 (2) | 192 (84.5) |
| Category 8: Safe use of medicines in my pain care (5 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 166)* | Health professionals (n = 229)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 8.1. Give me access to the right medication(s) that help me function rather than challenge whether it is needed or treat me like I am a drug addict | 9 (2) | 140 (84.3) | 8 (3) | 164 (71.6) |
| 8.2. Allow, and support me, to change my medication dosage based on my pain levels instead of dosage restrictions | 9 (2) | 127 (76.5) | 7 (3) | 132 (57.6) |
| 8.3. Provide timely access to repeat prescription medicines | 9 (1) | 141 (84.9) | 7 (3) | 158 (69.0) |
| 8.4. Support my decisions around medications, both what I choose and choose not to take, based on my experiences | 9 (1) | 142 (85.5) | 7 (3) | 163 (71.2) |
| 8.5. Provide me with the safe prescription medications I need to be able to actively participate in my life (ie, parent, work, social life, community work, etc) | 9 (1) | 144 (86.7) | 8 (2) | 177 (77.3) |
| Category 9: Diagnosis or looking for a cause (4 priorities) | ||||
|---|---|---|---|---|
| People with chronic pain and carers (n = 167) | Health professionals (n = 228)* | |||
| Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | Median in 1-9, NRS (IQR) | n (%) of responses in corresponding median band | |
| 9.1. Help me to find a diagnosis or cause for my pain without stigma | 9 (2) | 144 (86.2) | 8 (2) | 186 (81.6) |
| 9.2. Continue to look for reasons or diagnosis for my pain, even when tests or scans are inconclusive | 9 (2) | 133 (79.6) | 6 (4) | 73 (32.0) |
| 9.3. Provide a clear diagnosis quickly or provide me with a clear outline of how my pain will be investigated | 8 (2) | 138 (82.6) | 7 (3) | 151 (66.2) |
| 9.4. Undertake a thorough clinical assessment | 9 (1) | 150 (89.8) | 9 (1) | 209 (91.7) |
Bolded scores represent those pain care priorities not meeting retention criteria (defined as median panel ≥7 with level of agreement of ≥70% by panellists within the 7-9 band). Participants rated the importance of pain care priorities in increasing order of importance from 1 to 9.
*
Defines total number of responses to question where different from overall N (total).
IQR, interquartile range; NRS, numeric rating scale.