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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]