Background
National quality improvement programme for palliative care
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Patients die at their preferred place.
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Patients and relatives feel they are in control regarding palliative care.
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Patients and relatives see palliative care as being coordinated.
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Patients and relatives feel care to be concordant with their needs, preferences and values.
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Patients and relatives receive care for their needs in the physical, psychosocial and spiritual domains.
Objectives
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To gain insight into the effects of the National Quality Improvement Programme for Palliative Care as a whole on the quality of palliative care at a national level.
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To gain insight into the effects of the separate implementation trajectories of best practices on the quality of palliative care within the participating regional palliative care networks or organizations.
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To elucidate the measured effects by describing the implementation process and the barriers and facilitators within the separate implementation trajectories.
Methods
Evaluation study design
Study population
Effect evaluation
Data collection
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Numeric Rating Scales of six symptoms
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The Consumer Quality Index Palliative Care for patients
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The Consumer Quality Index Palliative Care for bereaved relatives
Symptoms (What number would you give your …symptom… on a scale of 0 to 10? | ||||||||||||
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No pain | 0 | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | Much pain |
No fatigue | Very fatigue | |||||||||||
Not short of breath | Very short of breath | |||||||||||
Not obstipated | Very obstipated | |||||||||||
Not sad | Very sad | |||||||||||
Not anxious | Very anxious |
Key objectives of the programme | Quality indicators measured with CQ index version for patients | Quality indicators measured with CQ index version for bereaved relatives |
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Patients die at their preferred place | - | *Percentage of patients who died in the location of their preference |
*Extent to which patients in the last month before their death were in the location of their preference | ||
Patients and relatives feel they are in control regarding palliative care | *Extent to which patients experience respect for their autonomy | *Extent to which relatives indicate that the patient was asked about her/his opinions with regard to end-of-life decisions |
*Extent to which patients receive information from their caregivers about the expected course of the disease | *Extent to which direct relatives received information about the advantages and disadvantages of various types of treatment | |
*Extent to which patients receive information about the advantages and disadvantages of various types of treatments | *Extent to which direct relatives received information that was understandable and unambiguous at the time of the patient’s death | |
*Extent to which patients indicate that they receive understandable explanations | *Extent to which, according to the bereaved relatives, their autonomy was respected | |
*Extent to which direct relatives were informed about the possibilities of aftercare | ||
Patients and relatives see palliative care as being coordinated | *Extent to which patients know who the contact person is for the care | *Extent to which the bereaved relatives knew who the contact person was for the care |
*Extent to which patients experience expertise of caregivers and continuity of care | *Extent to which direct relatives perceived expertise of caregivers and continuity of care | |
*Extent to which patients receive contradictory information | ||
Patients and relatives feel care to be concordant with their needs, preferences and values | *Extent to which patients are satisfied with “politeness” and “being taken seriously” by caregivers | *Extent to which the direct relatives felt that they were treated well in all respects by the caregivers |
*Extent to which patients experience respect for their privacy | *Extent to which direct relatives considered that the patient had the opportunity to be alone | |
*Extent to which patients indicate that caregivers respect their life stance | *Extent to which the direct relatives had the opportunity to be alone with their relative | |
*Percentage of patients who receive medical aids soon enough | ||
Patients and relatives receive care for their needs in the physical, psychosocial, and spiritual domains | *Extent to which patients receive support for their physical symptoms (pain, fatigue, shortness of breath and constipation) | *Extent to which relatives indicate that the patient had access to a counselor for spiritual problems |
*Extent to which patients receive help with physical care | *Extent to which relatives indicate that the patient received support with preparations for saying goodbye | |
*Extent to which patients receive attention from their caregivers | *Extent to which relatives indicate that there was attention for the psychosocial and spiritual well-being of the patient | |
*Extent to which patients receive support when they feel anxious or feel depressed | *Extent to which, according to the direct relatives, attention was paid to their own psychosocial and spiritual well-being | |
*Extent to which patients indicate that they have access to a counsellor for spiritual problems | *Extent to which direct relatives felt supported by the caregivers immediately after the patient’s death | |
*Extent to which a final conversation or discussion was held to evaluate the care and treatment |