Table 1 Attributes and levels for patient and caregiver experiment
Attribute Description | Levels | Included in Patient DCE | Included in Caregiver DCE |
|---|---|---|---|
Disease Information | 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 A3. I don’t want to know anything about motor neuron disease at any time | ✓ | ✓ |
Price of additional services | B1. All services would be free B2. Extra services provided will cost 80euro per visit, for example physiotherapy or speech and language therapy visit B3. Extra services provided will cost 40euro per visit, for example physiotherapy or speech and language therapy visit | ✓ | ✓ |
Arranging visits | 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 | ✓ | ✓ |
Distant to clinic | D1. I would attend Multidisciplinary team MND specialist clinic no matter how far away D2. I would just attend a local Neurology clinic | ✓ | ✓ |
Waiting times | 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 | ✓ | ✓ |
Place of care | 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 | ✓ | ✓ |
Decisions on care | 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 | ✓ | |
Personal care provision | 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 | ✓ | ✓ |
Timing of hospice care | 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 | ✓ | |
Communication devices | J1. I would use new communication technology including voice banking J2. I would not use new communication technology including voice banking | ✓ | |
Availability of phone advice | K1. Phone advice is not available K2. Phone advice is available 24 h a day K3. Phone advice is available during the hours of 9 am – 5 pm Monday to Friday | ✓ | ✓ |
Provision of emotional support | L1. Emotional support is not provided L2. Emotional support is provided by group meetings with other MND patients L3. Emotional support is provided from a counselor | ✓ | ✓ |
Dependable Healthcare professionals | M1. I would have healthcare professionals who I can depend on M2. I would not necessarily need healthcare professionals to depend on | ✓ | ✓ |
Who helps in the home | N1. I would have non-related individuals in my house to provide home help for my loved one N2. I would not have non-related individuals in my house to provide home help for my loved one | ✓ |