Background
Importance of primary palliative care
Challenges and opportunities for palliative care research in primary care
Setting
The Care Pathway for Primary Palliative Care (CPPPC)
2. Early assessment of patient’s needs and wishes |
b. Assessment of the patient’s needs in the biological, psychological, social and existential aspects of his or her life |
c. Advance care planning |
3. Interdisciplinary discussion |
4. Action: delivering palliative care |
5. Registration in a ‘palliative care pathway’ file, common for all team members |
6. Follow-up by the team, recognizing the different stages in the palliative continuum: the ‘early palliative’ stage (the patient cannot be cured anymore), the ‘transitional’ stage (the last months) and at last the ‘dying’ stage (the last few days) |
The implementation of the CPPPC in five clusters in Belgium
1. Finding a palliative care network willing to participate |
2. Asking the GP circles within the territory of the palliative care network to promote this project to their member GPs |
3. Organizing a ‘kick-off’ workshop and other educational sessions to motivate individual GPs to participate in this project, explaining the CPPPC and training the GPs to obtain an informed consent of palliative care patients |
4. Organizing an inter-professional platform where representatives of both the palliative care network and the GP-circles meet every six months to evaluate the regional implementation strategy |
5. Inviting representatives of the inter-professional platform of the region to an interregional platform every year, to enable them to learn from the experiences of the other regions |
The evaluation of the implementation of the CPPPC
Aims of this article
Methods/Design
The stepped wedge cluster design (quasi-experimental)
Cluster | Official language | Nr of inhabitants [46] | PCN/Palliative home care teams situation | GP circles |
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1: Zone of Antwerp | Dutch | 765.470 | One legal entity | 12, of which 3 not completely in the territory |
2: Zone of Mons | French | 572.979 | One legal entity | 8, of 3 which not completely in the territory |
3: Brussels Capital Region | Dutch/French | 1.163.486 | 1 PCN, 1 Dutch-speaking and 3 French-speaking palliative home care teams | 1 Dutch-speaking + union of 19 French-speaking |
4: Province of Limburg | Dutch | 856.280 | PCN and palliative home care teams separate, residing in the same building | 17, of which 1 not completely in the territory |
5: Province of Namur | French | 484.737 | One legal entity | 8, of which 2 not completely in the territory |
Stepped wedge cluster procedure
Study population
Intervention and research procedures
Outcome measures (health care consumption data)
Primary outcome: reduction of hospital death rate
Secondary outcome: use of services
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Contacts of patients with primary care: GPs, home care nurses, physiotherapists
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Support of patients by palliative home care: palliative forfeit, palliative home care teams
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Emergency department visits with or without GP referral
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Length of stay in hospital, nursing home, or palliative care unit
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Use of medication with clear curative or life prolonging intent (e.g. statins)
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Use of symptom medication (e.g. morphine, antidepressants)
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Selection of diagnostic procedures: common lab tests, imaging procedures
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Selection of therapeutic procedures: blood transfusion, ascites paracentesis, etc.
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Health care consumption costs.
Monitoring of implementation, quality of care and quality of life (GP and patient surveys)
Monitoring level of CPPPC implementation
Monitoring quality of care and quality of life
Sample size calculation
Recruitment strategies
Recruitment of PCNs
Recruitment of GPs through educational sessions
Recruitment of patients and informal care givers
Linkage of health care consumption data and questionnaire data
Coding procedure for the health care consumption data: standard data trajectory of the IMA (see Fig. 2)
Selection of relevant health care consumption data for the prospective study
Coding procedure for the questionnaire data (see Fig. 3)
Linkage of questionnaire data and health care consumption data (see Fig. 3)
Selection of relevant health care consumption data for the retrospective study (see Fig. 4)
Analysis
Ethical considerations
Stepped wedge cluster design
Data retrieval after death
Informed consent procedures
Data handling procedures
Discussion
General discussion
Major advantages and disadvantages of an electronic data collection system
Coping with challenges in palliative care research
The six key challenges | How this study tries to solve them |
---|---|
Recruitment | |
- Varying definitions of palliative care among clinicians and so-called ‘gate-keeping’: clinicians and family members keeping patients from participation | - Suggesting a ‘clear’ starting point for palliative care, i.e. life-expectancy of one year; training the GPs in communication skills specifically to obtain an informed consent. |
- Inability of patients to give informed consent | - By trying to recruit patient participants in the early palliative stage. |
Attrition: missing data and drop-out | - By having complementary datasets. For instance, if a participating patient stops delivering data, the authors still have access to the health consumption data. |
Differing disease categories | - Distinctions will be made related to disease category in the health consumption data and the baseline questionnaires. |
Respondent burden | - The researched unit is not only the patient, but also the informal caregivers and the GP – the research team hopes that all three components of this triangle can encourage each other in the data collection process. |
- Only to start there will be little paperwork, afterwards, an email will have to be answered once a month. | |
- If a patient, the informal care giver or the GP are tired of delivering data, they must contact the PCN to stop participating in the study; this allows the PCN or its related palliative home care team to help participants in clinical aspects, if appropriate and necessary. | |
Randomization: sometimes, randomization means denying an intervention to patients | - The stepped wedge cluster design allows the authors to implement the intervention in all clusters. |
Outcomes | - A multitude of research methods lead to a prism of outcomes pointing to quality of palliative care. Validated questionnaires like POS and POS-S were combined and reduced to balance importance of outcome measuring with avoidance of respondent burden. |
This approach fits in the Learning Health Care System’s paradigm
Discussion and conclusion
What was already known on the topic: |
1. Primary palliative care is an emerging field. |
2. Recruitment for palliative care research and for primary care research is a difficult process. |
3. Web-based questionnaires can be used for research purposes. |
4. In Belgium, health consumption data are available for research through the InterMutualistic Agency. |
What this article added to our knowledge: |
1. Data linkage of personalized web-based questionnaires data and individual health consumption data is possible in a secure way with respect for confidentiality issues. |
2. Electronic data coding algorithms allow researchers to use individualized but coded health care data for assessment of complex interventions, while respecting the privacy of included patients. |
3. IT solutions could partly reduce respondent burden in health care research. |