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Measurement
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Measurement instrument
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Baseline
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Follow-up (every 3 months)
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After patients’ death
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Patients
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Quality of care
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QLQ-IN-PATSAT32 [18], items CQ-index [19], items based on Dutch Quality framework Palliative Care [17]
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X
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X
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Health care consumption
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Self-administered items
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X
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X
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Shared decision making
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CPS [20], DEPS [21], Self-administered items
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X
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X
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Health care needs
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PNPC-sv patient form [22]
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X
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X
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Quality of life
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EORTC QLQ-C30 [23]
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X
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X
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Spiritual wellbeing
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FACIT-sp [24]
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X
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X
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Social support
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FACT-G scale [25]
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X
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X
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Use of social network
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Self-administered item
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X
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–
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Sexual health
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single items EORTC
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X
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X
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Body image
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BIS [26]
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X
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X
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Relationship satisfactiona
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Relationship ladder of the DAS [27]
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X
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X
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Illness perception
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BIP [28]
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X
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X
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Individual coping
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Brief COPE Inventory [29]
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X
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X
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Resilience
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Connor-Davidson Resilience Scale [30]
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X
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X
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Dyadic copinga
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DCI [31]
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X
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–
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Self-management
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HeiQ [32]
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X
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–
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Depression
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HADS depression scale [33]
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X
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–
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Relatives
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Quality of care
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INPATSAT32 [18], CQ-index [19], items based on Dutch Quality framework Palliative Care [17]
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X
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X
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–
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Health care consumption
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Self-administered items
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X
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X
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Health care needs
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PNPC-sv caregiver form [22]
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X
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X
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–
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Evaluation of services
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VOICES-SF [34], items based on Dutch Quality framework Palliative Care [17]
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–
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–
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X
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Quality of life
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EORTC QLQ-C30 items [23]
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X
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X
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X
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Sexual health
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single items EORTC
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X
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X
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–
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Social support
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FACT-G scale [25]
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X
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X
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X
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Personal self-care
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Personal Self-Care subscale of the SCPS [35]
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X
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X
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X
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Caregiver burden
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ZARIT-12 [36], SRB [37]
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X
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X
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–
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Relationship satisfactiona
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Relationship ladder from the DAS [27]
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X
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X
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–
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Individual coping
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brief COPE Inventory [29]
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X
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X
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–
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Resilience
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Connor-Davidson Resilience Scale [30]
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X
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X
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–
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Pre-death grief
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Pre-death grief [38]
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X
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X
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–
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Dyadic copinga
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DCI [31]
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X
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–
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–
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Circumstances of death
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Self-administered items
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–
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–
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X
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Openness of communication about illness and death
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CCID [39]
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–
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–
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X
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Impact of death
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IES [40]
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–
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–
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X
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- 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
