Table 2 Overview measurement instruments and times points at which the questionnaires are administered during the study

 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 satisfaction^a

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 coping^a

DCI [31]

X

–

  Self-management

HeiQ [32]

X

–

  Depression

HADS depression scale [33]

X

–

 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 satisfaction^a

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 coping^a

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