Table 3 Results of Random effects probit model for patient DCE full analysis, and subgroup analysis by time of diagnosis
Attribute | Full Analysis Coefficient (95% Confidence Interval) | Subgroup Analysis | |
|---|---|---|---|
Diagnosis ≤ 6 months Coefficient (95% Confidence Interval) | Diagnosis > 6 months Coefficient (95% Confidence Interval) | ||
Intercept | -0.21 (−0.49, 0.07) | − 0.44 (−1.03, 0.13) | − 0.08 (− 0.39, 0.23) |
Reference level | |||
 A1. I would get all the information about motor neuron disease at the time of diagnosis | |||
  A2. I would get all information about motor neuron disease when I think I will need it | −0.22 (− 0.44, − 0.01) | −0.21 (− 0.67, 0.24) | −0.25 (− 0.50, − 0.01) |
  A3. I don’t want to know anything about motor neuron disease at any time | − 0.18 (− 0.40, 0.05) | − 0.19 (− 0.65, 0.27) | −0.24 (− 0.50, 0.01) |
B. Price of additional services | − 0.00 (− 0.00, 0.00) | 0.00 (− 0.01, 0.01) | 0.00 (− 0.01, 0.00) |
Reference level | |||
 C1. I would get regular visits from community multidisciplinary team (for e.g. physiotherapy, occupational therapist) and the public health nurse in my home | |||
  C2. I would arrange multidisciplinary team (for e.g. physiotherapy, occupational therapist) and public health nurse visits as I need in my home | 0.07 (−0.08, 0.22) | 0.05 (− 0.26, 0.35) | 0.02 (− 0.16, 0.19) |
Reference level | |||
 D1. I would attend Multidisciplinary team MND specialist clinic no matter how far away | |||
  D2. I would just attend a local Neurology clinic | −0.11 (− 0.31, 0.08) | − 0.14 (− 0.55, 0.26) | −0.01 (− 0.23, 0.22) |
Reference level | |||
 E1. I would be prepared to go to a multidisciplinary clinic with long waiting times in the clinic to see more than one professional | |||
  E2. I would not be prepared to go to a multidisciplinary clinic with long waiting times in the clinic to see more than one professional | 0.04 (−0.13, 0.22) | 0.27 (−0.09, 0.64) | 0.00 (− 0.20, 0.20) |
Reference level | |||
 F1. No matter what I would like to receive all my care at home | |||
  F2. I would receive care in a hospital or a hospice as an inpatient | −0.05 (− 0.20, 0.11) | −0.08 (− 0.24, 0.04) | −0.06 (− 0.24, 0.12) |
Reference level | |||
 G1. The doctors advise and help me when I need treatments including ventilation and stomach tube | |||
  G2. The doctors advise me, and I would decide what treatments I get including ventilation and stomach tube | −0.11 (− 0.26, 0.03) | −0.35 (− 0.67, − 0.05) | −0.07 (− 0.23, 0.10) |
Reference level | |||
 H1. Personal care in the home is provided to me by someone who is not a relative or friend | |||
  H2. Personal care in the home is provided by a relative or friend | −0.04 (− 0.23, 0.16) | −0.28 (− 0.73, 0.17) | 0.00 (− 0.22, 0.22) |
Reference level | |||
 I1. I would start to see the Hospice Care team early on in my illness | |||
  I2. I would start to see the Hospice Care team when something serious happens later in my illness | 0.16 (0.02, 0.30) | 0.21 (− 0.10, 0.51) | 0.13 (− 0.03, 0.29) |
Reference level | |||
 J1. I would use new communication technology including voice banking | |||
  J2. I would not use new communication technology including voice banking | −0.14 (− 0.29, − 0.00) | −0.01 (− 0.33, 0.30) | −0.17 (− 0.33, − 0.00) |
Reference level | |||
 K1. Phone advice is not available | |||
  K2. Phone advice is available 24 h a day | 0.04 (− 0.16, 0.23) | −0.06 (− 0.47, 0.34) | 0.00 (− 0.22, 0.22) |
  K3. Phone advice is available during the hours of 9 am – 5 pm Monday to Friday | −0.09 (− 0.24, 0.05) | −0.05 (− 0.35, 0.24) | −0.11 (− 0.28, 0.05) |
Reference level | |||
 L1. Emotional support is not provided | |||
  L2. Emotional support is provided by group meetings with other MND caregivers | 0.04 (−0.15, 0.23) | 0.03 (− 0.15, 0.20) | 0.01 (− 0.21, 0.24) |
  L3. Emotional support is provided from a counselor | 0.02 (−0.13, 0.17) | 0.03 (− 0.30, 0.36) | 0.03 (− 0.15, 0.20) |
Reference level | |||
 M1. I would have healthcare professionals who I can depend on | |||
  M2. I would not necessarily need healthcare professionals to depend on | 0.10 (−0.08, 0.28) | 0.42 (0.02, 0.83) | 0.09 (−0.12, 0.30) |
Site of Onset | −0.07 (− 0.28, 0.13) | −0.2 (− 0.64, 0.24) | −0.09 (− 0.34, 0.16) |
Time Since Diagnosis | − 0.01 (− 0.24, 0.21) | – | – |
Sex | − 0.04 (− 0.24, 0.14) | 0.39 (− 0.25, 0.73) | −0.12 (− 0.35, 0.09) |
Kings Staging | 0.13 (− 0.08, 0.34) | 0.24 (− 0.25, 0.73) | 0.00 (− 0.24, 0.25) |
Rho-squared | 0.13 | 0.2 | 0.1 |
Adjusted rho-squared | 0.09 | 0.08 | 0.07 |