Relationship between NAT:PD-ILD items and SGRQ-ILD comparator items, and between the NAT:PD-ILD items relating to the carer and appropriate CSI and CSNAT items
| Agreement between NAT:PD-ILD items and SGRQ-ILD comparator items | The prevalence and bias-adjusted kappa (PABAK), Cohen’s kappa and percentage of agreement between NAT:PD-ILD items relating to the ability and well-being of the carer and appropriate CSI and CSNAT items | |||||||
| NAT:PD-ILD Patient well-being ‘Does the patient have…’ | The SGRQ-I comparator | Kendall’s tau-b (Kendall’s score, SE of score, P value) | NAT:PD-ILD; carer items | Comparator items from CSI and CSNAT | n | PABAK | Cohen’s kappa (SE) | % Agreed |
| 4. Unresolved physical symptoms | Part 1 Q1–6; part 2 section 3 Q1–6; and part 2 section 4 Q6 | 0.16 (266, 163.0, P=0.10) | 10. Distressed about the patient’s symptoms? | CSI8: Some behaviour is upsetting. CSI12: Feeling completely overwhelmed CSNAT3: Managing your relative’s symptoms, including giving medicines | 28 | 0.57 | 0.53 (0.19) | 79 |
| 5. Unresolved psychological symptoms/loss quality of life? | Part 1 Q6; part 2 section 4 Q1–6; and part 2 section 7 | 0.32 (512, 158.6, P=0.001) | 11. Having difficulty providing physical care? | CSI3: It is a physical strain. CSI12: Feeling completely overwhelmed CSNAT3: Managing your relative’s symptoms, including giving medicines CSNAT5: Providing personal care for your relative CSNAT9: Equipment to help care for your relative CSNAT12: Practical help in the home | 28 | 0.14 | 0.23 (0.14) | 57 |
| 6. Problems with daily living activities? | Part 2 section 2 Q1–5; part 2 section 4 Q4+5; part 2 section 5 Q1–5; part 2 section 6 Q1–4; and part 2 section 7 | 0.36 (588, 159.7, P<0.001) | 12. Having difficulty coping with the patient’s psychological symptoms? | CSI7: There have been emotional adjustments. CSI8: Some behaviour is upsetting. CSI12: Feeling completely overwhelmed | 28 | 0.36 | 0.36 (0.18) | 68 |
| 7. Spiritual or existential concerns? | Section 4 Q2; and part 2 section 7 | 0.11 (128, 129.9, P=0.33) | 13. Concerned about financial or legal issues? | CSI7: There have been emotional adjustments. CSI8: Some behaviour is upsetting. CSI12: Feeling completely overwhelmed | 27 | 0.41 | 0.31 (0.18) | 70 |
| 8. Work, financial or legal concerns? | Part 2 section 1 | 0.34 (111, 53.2, P=0.04) | 14. Experiencing problems that are interfering with interpersonal relationships or functioning, or is there a history of such problems? | CSI11: It is a financial strain. CSNAT4: Your financial, legal or work issues | 28 | −0.57 | −0.13 (0.07) | 21 |
| 9. Health beliefs, cultural or social factors making care delivery complex? | Part 2 section 4 Q1–6 | 0.24 (250, 108.6, P=0.02) | 15. Unresolved psychosocial problems or feelings? | CSI4: It is confining. CSI5: There have been family adjustments. CSI6: There have been changes in personal plans. CSI7: There have been emotional adjustments. CSI9: It is upsetting to find…has changed so much from his/her former self. CSI10: There have been work adjustments. CSNAT2: Having time for yourself in the day CSNAT11: Talking with your relative about his or her Illness | 27 | 0.04 | 0.17 (0.14) | 52 |
| – | – | – | 16. Grief over the future death of the patient | CSNAT13: Knowing what to expect in the future when caring for your relative* | 26 | −0.46 | −0.10 (0.10) | 27 |
*This is more of a practical question, but was the nearest construct within the CSNAT.
Levels of concern in the NAT:PD-ILD were grouped into 0=‘None’ vs 1=‘Some/potential’ + ‘Significant’; the CSI responses were coded 0 for ‘No’ and 1 for ‘Yes’; and the four CSNAT item responses were categorised into two groups (0=‘No’ vs 1=‘A little more’ + ‘Quite a bit more’ + ‘Very much more’). For each NAT:PD-ILD item, the agreement between whether or not the carer indicated at least some problems and whether or not they had a ‘1’ in any of the recoded CSI or CSNAT items they were being compared with was calculated.
CSI; Carer Strain Index; CSNAT; Carer Support Needs Assessment Tool; NAT:PD-ILD, needs assessment tool: progressive disease in interstitial lung disease; PABAK; prevalence and bias-adjusted kappa; SGRQ-ILD, St George’s Respiratory Questionnaire-interstitial lung disease.