Table 2.
Overview measurement instruments and times points at which the questionnaires are administered during the study
| Measurement | Measurement instrument | Baseline | Follow-up (every 3 months) | After patients’ death |
|---|---|---|---|---|
| Patients | ||||
| Quality of care | QLQ-IN-PATSAT32 [18], items CQ-index [19], items based on Dutch Quality framework Palliative Care [17] | X | X | |
| Health care consumption | Self-administered items | X | X | |
| Shared decision making | CPS [20], DEPS [21], Self-administered items | X | X | |
| Health care needs | PNPC-sv patient form [22] | X | X | |
| Quality of life | EORTC QLQ-C30 [23] | X | X | |
| Spiritual wellbeing | FACIT-sp [24] | X | X | |
| Social support | FACT-G scale [25] | X | X | |
| Use of social network | Self-administered item | X | – | |
| Sexual health | single items EORTC | X | X | |
| Body image | BIS [26] | X | X | |
| Relationship satisfactiona | Relationship ladder of the DAS [27] | X | X | |
| Illness perception | BIP [28] | X | X | |
| Individual coping | Brief COPE Inventory [29] | X | X | |
| Resilience | Connor-Davidson Resilience Scale [30] | X | X | |
| Dyadic copinga | DCI [31] | X | – | |
| Self-management | HeiQ [32] | X | – | |
| Depression | HADS depression scale [33] | X | – | |
| Relatives | ||||
| Quality of care | INPATSAT32 [18], CQ-index [19], items based on Dutch Quality framework Palliative Care [17] | X | X | – |
| Health care consumption | Self-administered items | X | X | |
| Health care needs | PNPC-sv caregiver form [22] | X | X | – |
| Evaluation of services | VOICES-SF [34], items based on Dutch Quality framework Palliative Care [17] | – | – | X |
| Quality of life | EORTC QLQ-C30 items [23] | X | X | X |
| Sexual health | single items EORTC | X | X | – |
| Social support | FACT-G scale [25] | X | X | X |
| Personal self-care | Personal Self-Care subscale of the SCPS [35] | X | X | X |
| Caregiver burden | ZARIT-12 [36], SRB [37] | X | X | – |
| Relationship satisfactiona | Relationship ladder from the DAS [27] | X | X | – |
| Individual coping | brief COPE Inventory [29] | X | X | – |
| Resilience | Connor-Davidson Resilience Scale [30] | X | X | – |
| Pre-death grief | Pre-death grief [38] | X | X | – |
| Dyadic copinga | DCI [31] | X | – | – |
| Circumstances of death | Self-administered items | – | – | X |
| Openness of communication about illness and death | CCID [39] | – | – | X |
| Impact of death | IES [40] | – | – | X |
Abbreviations: BIP Brief illness perception, BIS Body image scale, BMI Body mass index, CCID Caregiver’s communication with the patient about illness and death, CPS Control preferences scale, CQ-index Consumer quality index, DAS Dyadic adjustment scale, DCI Dyadic coping inventory, DEPS Decision-making participation self-efficacy scale, EORTC QLQ-C30 European organization for research and treatment of cancer quality of life questionnaire core 30 items, FACIT-sp Functional assessment of chronic illness therapy spiritual well-being, FACT-G Functional assessment of cancer therapy general, HADS Hospital anxiety and depression scale, HeiQ Health education impact questionnaire, IES Impact of event scale, INPATSAT32 In-patient satisfaction with care measure 32 items, PNPC-sv Problems and needs in palliative care short form, SCPS Self care practices scale, SRB Self-rated burden scale, VOICES-SF Views of informal carers’ evaluation of services short form, ZARIT-12 Zarit Burden
a only provided to those patients and relatives with a partner