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Table 2 Outcomes, comparators, and data sources

From: Primary palliative Care in General Practice – study protocol of a three-stage mixed-methods organizational health services research study

Outcome Measure(s), indicator(s) Data source
Patient-related outcomes
 Quality of life Physical and psychosocial wellbeing, social support, financial strain Standardized quality of health / care related measures such as POSa; QODDb; QUELCc
 Quality of care Unplanned hospital admissions Health insurance claims data
Service usage and time investment
 Service usage GPs’ consultations and home visits; prescriptions (medication, medical aids, interventions); referral to specialists and other service providers; out-of-hours contacts; emergency interventions Health insurance claims data
GP’s office software
 GPs’ time investment Time dedicated to assessments, home visits, telephone consultations, physical care, and psychosocial care Time registration (ethnographic field research)
Impact on GPs’ and practice staff’s ability and capacity to deliver primary palliative care
 Quality of palliative care delivery GPs’ and practice staff’s appraisal of the quality of PC provided to their patients Organizational ethnographic field research including individual and group interviews
 Quality of care other than palliative care GPs’ and practice staff’s appraisal of the quality of care provided to other patients Organizational ethnographic field research including individual and group interviews
 Work satisfaction GPs’ and practice staff’s work-related satisfaction and sense of meaningfulness Organizational ethnographic field research including individual and group interviews
Economic evaluation
 Direct costs for the healthcare system Service usage (consultations and home visits, prescriptions of medicines and medical aids, specialist referrals, social services, out-of-hours contacts, emergency interventions) Health insurance claims data
GP’s office software
 Direct costs for patients and relatives Additional costs for medications and therapeutic interventions not covered by the health insurance funds Organizational ethnographic field research including individual and group interviews
 Indirect costs for patients and relatives Social isolation; (temporary) work loss; abandon of activities or relationships Organizational ethnographic field research including individual and group interviews
 Direct costs for GPs and other healthcare providers Costs invested for PC not remunerated within the medical compensation system Organizational ethnographic field research including individual and group interviews
 Indirect costs for GPs and other healthcare providers Personal strain; impact on healthcare professionals’ private lives; abandon of activities or relationships Organizational ethnographic field research including individual and group interviews
Feasibility of the intervention package
 Process monitoring and formative evaluation of the implementation phase Normalization Process Theory core constructs (coherence, cognitive participation, collective action, and reflexive monitoring) NoMADd assessment instrument for the evaluation of the implementation of complex interventions
  1. aPalliative Outcome Scale [38]
  2. bQuality of Dying and Death questionnaire [47]
  3. cQuality of End of Life Care Questionnaire [55]
  4. dMeasure Development Based on Normalization Process Theory [56]