Table 4 Instruments and item sources. The term “professionals” refers to health care providers in SOPC and hospices, including primary palliative care physicians, but not including consultants for specialized neuropalliative care, who are designated as “consultants”
Constructs | Instruments and item sources | Number of items | Target groups |
|---|---|---|---|
Sociodemographic data | Own items | 2 | Patients |
Own items | 7 | Relatives | |
Own items | 6 | Professionals (physicians) | |
Own items | 6 | Professionals (nurses) | |
Own items | 7 | Consultants | |
Own items | 5 | SOPC and hospice teams | |
Symptom burden | Integrated Palliative Care Outcome Scale IPOS [22] | 17 | Professionals, patients, relatives |
Quality of life | McGill Quality of Life Questionnaire McGill QOL-R [9] | 15 | Patients |
Quality of life – overall | Item taken from [10] | 1 | Patients |
Quality of life – health-related | Item modified from the EQ5D/EuroQol [29] | 1 | Patients |
Patientsʼ capabilities | 1 | Professionals | |
Caregiver burden | Items taken and partly modified from the Quality of Life in Life Threatening Illness-Family Carer Version Questionnaire QOLLTI-F [8] | 5 | Relatives |
Change in health state | Own item: change in health state since treatment of neurological signs and symptoms | 1 | Professionals, consultants, patients, relatives |
Change in health state and neurological state | Own items: change in health state as well as neurological signs and symptoms since treatment of neurological signs and symptoms | 2 | Professionals (via consultantsʼ office) |
Confidence with treatment | Own items: confidence with treatment of neurological diseases | 5 | Professionals |
Satisfaction with treatment overall | Items modified from the Telehealth Satisfaction Scale TESS [1, 20, 21, 28] and own items | 10 | Patients, relatives |
Satisfaction with consultation | 7 | Professionals | |
Success of treatment of neurological diseases | Items inspired by [11] | 2 | Professionals |
Satisfaction with organization of the consultation | Items inspired by the Internal Participation Scale IPS [14, 17] and own items | 3 | Patients |
6 | Relatives | ||
4 | Professionals | ||
5 | Consultants | ||
Surprise question | Surprise in case of death [26] | 1 | Consultants |
Acceptability | Items inspired by the eHealth literacy questionnaire eHLQ [16] and the Telehealth Usability Questionnaire TUQ [25] | 2 | Professionals, patients, relatives |
Satisfaction with palliative care overall | Items inspired by [14] and own items | 3 | Professionals |
Estimated and actual time requirement | Items inspired by [19] | 6 | Professionals, consultants |
Technical aspects of consultation | Items inspired by the TUQ [25] and the Post-Study System Usability Questionnaire PSSUQ (Lewis 2002) | 4 | Consultants |
Technology readiness | Short Scale for Technology Commitment [23] | 12 | Professionals, consultants |
Team participation | IPS [17] | 6 | Professionals |
Attitude toward teamwork in healthcare | Attitude Toward Teamwork in Healthcare Scale [13] | 19 | Professionals |
System usability | System Usability Scale SUS [12] | 10 | Professionals, consultants |
Computer System Usability Questionnaire CSUQ [18] | 19 | Consultants |