Development of a set of process and structure indicators for palliative care: the Europall project

  • Kathrin Woitha1Email author,

    Affiliated with

    • Karen Van Beek2,

      Affiliated with

      • Nisar Ahmed3,

        Affiliated with

        • Jeroen Hasselaar1,

          Affiliated with

          • Jean-Marc Mollard5,

            Affiliated with

            • Isabelle Colombet6, 7,

              Affiliated with

              • Lukas Radbruch4,

                Affiliated with

                • Kris Vissers1 and

                  Affiliated with

                  • Yvonne Engels1

                    Affiliated with

                    BMC Health Services Research201212:381

                    DOI: 10.1186/1472-6963-12-381

                    Received: 20 October 2011

                    Accepted: 31 October 2012

                    Published: 2 November 2012

                    Abstract

                    Background

                    By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries.

                    Methods

                    As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe.

                    Results

                    The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework.

                    Conclusions

                    We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs.

                    Keywords

                    Quality indicator Organisation Europe Public health Palliative care Europall

                    Background

                    Following the 2002 definition of the World Health Organisation (WHO), palliative care is no longer restricted to patients with cancer; it should be available for all patients with life-threatening diseases [1]. Furthermore, palliative care is applicable early in the course of the disease and can be delivered in conjunction with interventions that aim to prolong life. Palliative care needs a team approach in order to relieve not only pain and other somatic symptoms but also to provide multi-dimensional care including psychosocial and spiritual care and support for patients and their proxies. This wider definition implies an increase of the number of patients eligible for palliative care. Due to successful medical interventions, the aging population and improved survival of patients with chronic diseases or with cancer, the demand for palliative care will increase too [2, 3].

                    In 2003, the Council of Europe launched recommendations for the organisation of palliative care regarding settings and services, policy and organisation, quality improvement and research, education and training, family, communication with the patient and family, teams and bereavement. This included further cooperation between European countries [4]. As most scientific studies focus on clinical outcomes, it is unclear whether these recommendations and the WHO definition have been implemented in the organisation of palliative care in Europe. By measuring the quality of the organisation of palliative care, patients, caregivers and policy makers can monitor whether in their country, specific settings and networks for palliative care meet the recommendations of the council of Europe and of the WHO. This information would give better insight, which is needed for the measurement of the impact of palliative care programs [5].

                    A valid and reliable method for assessing the quality of the organisation of care is the use of structure and process quality indicators (QIs). QIs are ‘explicitly defined and measurable items referring to the outcomes, processes or structure of care’ [6, 7]. In a systematic review published in 2009, clinical indicators appeared to be widely overrepresented over indicators that assess organisational issues of palliative care, and most QIs were developed in and for one specific country or setting [8].

                    Therefore, we aimed to develop a scientifically sound European set of structure and process QIs, as a first step in quality measurement and improvement.

                    Methods

                    The study, undertaken by partners from seven collaborating countries (Belgium, United Kingdom, France, Germany, Netherlands, Poland and Spain), ran from October 2007 till September 2010 [9]. It was co-funded by the European Executive Agency for Health and Consumers (EAHC).

                    QI sets can be based on existing sets of QIs, recommendations from clinical guidelines, scientific literature, best practice or expert consensus [6]. We used a combination of these.

                    As palliative care, being a relatively young field within health care is changing rapidly. The initial phase of this project was an update and extension of a previous review aiming to find already existing QIs in literature or aspects of the organisation of the palliative care for which QIs would be useful [8]. QIs were operationalized as ‘measurable items referring to the outcomes, processes or structure of care’ [6, 7]. Organisation of palliative care was defined as ‘systems to enable the delivery of good quality in palliative care’, which made us focus on processes and structures [7]. Besides publications that describe the development or use of QIs for the organisation of palliative care, publications were used that describe the structure or process of good palliative care, in order to develop QIs if not available yet.

                    Main database search

                    As an update and extension of an existing systematic review, the following bibliographic databases were searched: Medline, Scopus, PsycINFO, Social Medicine, CINAHL, the Cochrane Database, Embase, SIGLE, ASCO, and Google Scholar by an existing search strategy (Additional file 1: Appendix A) [8]. If applicable, Mesh terms were changed, as these are database-specific.

                    Inclusion criteria were a publication period from December 2007 to May 2009, as the systematic review ran until December 2007 and containing information about the development or use of (sets of) QIs.

                    Papers describing QIs about palliative care for children, clinical outcome indicators, patient outcome and on treatment were excluded, as well as scientific papers that were not written in English.

                    The initial selection process was based on independent screening by three researchers of title and/or abstract, followed by a selection based on full text. Additionally, reference lists of obtained papers were studied and hand searches were performed (Current Opinion in Supportive and Palliative Care, Journal of Pain and Symptom Management, Palliative Medicine and Quality and Safety in Health Care Journal).

                    The QIs derived from the search were categorized in a framework. It was based on (1) a previously developed framework for evalution of the organisation of general practice and adapted for palliative care and (2) the recommendations of the Council of Europe [4, 10]. It contains the domains 1. Definition of a palliative care service, 2. Access to palliative care, 3. Infrastructure, 4. Assessment tools, 5. Personnel, 6. Documentation of clinical data, 7. Quality and safety issues, 8. Reporting clinical activity of palliative care, 9. Research and 10. Eduation.

                    Grey literature search

                    If a domain or subdomain of the framework was not covered with QIs found in the literature search, an additional grey literature search was performed. Grey literature was defined as ‘literature which has not been formally published in peer- reviewed literature’ [11]. Inclusion of grey literature was restricted to reports from government agencies or scientific research groups, white papers and websites from national organisations of the seven participating countries. Finally, the network of the Europall research group was used to identify relevant papers.

                    Methods of screening and article selection

                    The steering group of the Europall project planned two meetings in September and October 2009 with all project members (Additional file 1: Appendix B).

                    QI selection

                    The draft set of structure and process QIs was discussed during the first steering group meeting in September 2009. Academic experts from several disciplines in palliative care, all from one of the seven participating European countries were invited. Consensus was based on 1. whether it considered a process or structure QI 2. whether it overlapped with other proposed QIs, 3. to which domain of the framework (Table  1) it belonged [10] and 4. for which settings it was applicable. Based on the grey literature search, the project partners could suggest new QIs about aspects that were relevant but not yet operationalised as QIs.
                    Table 1

                    Quality indicator set

                    Definition of a palliative care service

                    1

                    All the services below are part of a comprehensive palliative care service: Palliative day care, Palliative home care support team, Hospice beds, Palliative hospital support team, Inpatient palliative care hospital beds, Palliative care outpatient clinic, Bereavement support

                    Structure indicator

                    All settings

                    New developed

                    2

                    All the services below are part of a comprehensive palliative care service: Palliative day care

                    Structure indicator

                    All settings

                    New developed

                    3

                    All the services below are part of a comprehensive palliative care service: Palliative home care support team

                    Structure indicator

                    All settings

                    New developed

                    4

                    All the services below are part of a comprehensive palliative care service: Hospice beds

                    Structure indicator

                    All settings

                    New developed

                    5

                    All the services below are part of a comprehensive palliative care service: Palliative hospital support team

                    Structure indicator

                    All settings

                    New developed

                    6

                    All the services below are part of a comprehensive palliative care service: Inpatient palliative care hospital beds (e.g. palliative care unit)

                    Structure indicator

                    All settings

                    New developed

                    7

                    All the services below are part of a comprehensive palliative care service: Palliative care outpatient clinic

                    Structure indicator

                    All settings

                    New developed

                    8

                    All the services below are part of a comprehensive palliative care service: Bereavement support

                    Structure indicator

                    All settings

                    New developed

                    Access to palliative care

                    A. Access and availability (All settings)

                    9

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: Day care, at home, Hospital, Hospice, Nursing home, Outpatient clinic, Day care

                    Process indicator

                    All settings

                    New developed

                    10

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: Day care (excluding palliative day care)

                    Process indicator

                    All settings

                    New developed

                    11

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: At home (or home replacing institution s.a mental institution, prison)

                    Process indicator

                    All settings

                    New developed

                    12

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: Hospital

                    Process indicator

                    All settings

                    New developed

                    13

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: Hospice

                    Process indicator

                    All settings

                    New developed

                    14

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: Care home

                    Process indicator

                    All settings

                    New developed

                    15

                    A palliative care team is available at the request of the treating professional/team in all of the following settings: Outpatient clinic (excluding palliative care outpatient clinic)

                    Process indicator

                    All settings

                    New developed

                    16

                    For every professional/team specialised palliative care advice is available 24 hours a day, 7 days a week

                    Process indicator

                    All settings

                    Changed

                    17

                    Patients in need of palliative care and their families have access to palliative care facilities: Throughout the entire duration of their disease

                    Process indicator

                    All settings

                    Changed

                    18

                    Patients in need of palliative care and their families have access to palliative care facilities: With no extra financial consequences for the patient

                    Process indicator

                    All settings

                    Changed

                    19

                    Patients receiving palliative care have access to diagnostic investigations (e.g. X-rays, blood samples) regardless of their setting

                    Process indicator

                    All settings

                    Changed

                    Primary care (Home, Nursing home)

                    20

                    Palliative care is available for the patient and their family by:Phone

                    Process indicator

                    Primary care indicator

                    Changed

                    21

                    Palliative care is available for the patient and their family by: Visiting the patient

                    Process indicator

                    Primary care indicator

                    Changed

                    22

                    Palliative care is available for the patient and their family by: Bringing the patient to the service

                    Process indicator

                    Primary care indicator

                    Changed

                    23

                    For a palliative patient in a crisis, the following can be arranged within 24 hours: Admission

                    Process indicator

                    Primary care indicator

                    Changed

                    24

                    For a palliative patient in a crisis, the following can be arranged within 24 hours: An urgent discharge to patients home

                    Process indicator

                    Primary care indicator

                    Changed

                    25

                    For a palliative patient in a crisis, the following can be arranged within 24 hours: Transfer to another setting of care

                    Process indicator

                    Primary care indicator

                    Changed

                    B. Out of hours (All settings)

                    Staff

                    26

                    A member of a palliative care team is available 24 hours a day, 7 days a week: For palliative care consultation by phone

                    Process indicator

                    All settings

                    Changed

                    27

                    A member of a palliative care team is available 24 hours a day, 7 days a week: To provide bedside care in a crisis

                    Process indicator

                    All settings

                    Changed

                    Drugs

                    28

                    The following treatments are available for a palliative patient 24 hours a day, 7 days a week: Opioids and other controlled drugs

                    Structure indicator

                    Primary care indicator

                    Combined/ Changed

                    29

                    The following treatments are available for a palliative patient 24 hours a day, 7 days a week: Anticipatory medication for the dying patient

                    Structure indicator

                    Primary care indicator

                    Combined/ Changed

                    30

                    The following treatments are available for a palliative patient 24 hours a day, 7 days a week: Syringe drivers

                    Structure indicator

                    Primary care indicator

                    Combined/ Changed

                    C. Continuity of care (All settings)

                    31

                    There is a procedure for exchange of clinical information across caregivers, disciplines and settings

                    Process indicator

                    All settings

                    Changed

                    32

                    Before discharge/transfer/admission there is information transfer to the caregivers in the next setting regarding care and treatment

                    Process indicator

                    All settings

                    Changed

                    33

                    There is a professional caregiver per individual palliative patient nominated as responsible ‘key worker‘ who coordinates care

                    Process indicator

                    All settings

                    Combined/ Changed

                    34

                    The responsible ‘key worker‘ pays special attention to continuity of care within and across settings

                    Process indicator

                    All settings

                    Combined/ Changed

                    Inpatient setting (Hospital, Palliative care unit, Hospice)

                    35

                    General practitioners (GP‘s) are routinely called when a patient is being discharged home or transferred to another setting

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    36

                    The discharge/transfer letter of palliative care patients contains a multidimensional diagnosis, prognosis and treatment plan (see indicator 48 Clinical record )

                    Structure indicator

                    Inpatient setting indicator

                    Changed

                    Primary care

                    37

                    The primary care out-of-hours service has handover forms (written or -electronic) with clinical information of all palliative care patients in the terminal phase at home

                    Structure indicator

                    Primary care indicator

                    Changed

                    Infrastructure

                    A. All settings

                    Infrastructure

                    38

                    Specialist equipment (e.g. anti decubitus mattresses, aspiration material, stoma care, oxygen delivery, special drug administration pumps, hospital beds, etc.) is available for the nursing care of palliative care patients in each specific setting

                    Structure indicator

                    All settings

                    Changed

                    39

                    There is a dedicated room where multidisciplinary team meetings within one setting takes place

                    Structure indicator

                    All settings

                    New developed

                    40

                    There are dedicated facilities for multidisciplinary communications across settings: A dedicated room for meetings

                    Structure indicator

                    All settings

                    Changed

                    41

                    There are dedicated facilities for multidisciplinary communications across settings: Facilities for video or telephone conferences

                    Structure indicator

                    All settings

                    Changed

                    Information about care

                    42

                    There is an up to date directory of local caregivers and organisations that can have a role in palliative care

                    Structure indicator

                    All settings

                    New developed

                    43

                    There are dedicated information about the palliative care service: A website

                    Structure indicator

                    All settings

                    Changed

                    44

                    There are dedicated information about the palliative care service: Leaflets or brochures

                    Structure indicator

                    All settings

                    Changed

                    45

                    Patient information should be available in relevant foreign languages

                    Structure indicator

                    All settings

                    Changed

                    46

                    Appropriately trained translators should be available if professional caregivers and patient or family members do not speak the same language

                    Process indicator

                    All settings

                    Changed

                    47

                    There is a computerised medical record, to which all professional caregivers involved in the care of palliative care patients have access: Within one setting

                    Process indicator

                    All settings

                    Combined

                    IT systems

                    48

                    There is a computerised medical record, to which all professional caregivers involved in the care of palliative care patients have access: Across different settings

                    Process indicator

                    All settings

                    Combined

                    B. Inpatient setting (Hospital, Palliative care unit, Hospice, Nursing home)

                    49

                    Consultations with the patient and/or family/informal caregivers are done in an environment where privacy is guaranteed (e.g. there is a dedicated room)

                    Structure indicator

                    Inpatient setting indicator

                    Changed

                    50

                    Dying patients are able to have a single bedroom if they want to

                    Process indicator

                    Inpatient setting indicator

                    New developed

                    51

                    There are facilities for a relative to stay overnight

                    Structure indicator

                    Inpatient setting indicator

                    New developed

                    52

                    Family members and friends are able to visit the dying patient without restrictions of visiting hours

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    53

                    There is a private place (e.g. dedicated room) for saying goodbye to the deceased

                    Structure indicator

                    Inpatient setting indicator

                    New developed

                    C. Home care

                    54

                    For a palliative care patient staying at home there is the possibility, if needed, to provide someone (a volunteer or professional) to stay overnight if needed

                    Process indicator

                    Home care indicator

                    Changed

                    Assessment tools

                    55

                    There is a holistic assessment of palliative care needs of patients and their family caregivers (e.g. SPARC)

                    Process indicator

                    All settings

                    Changed

                    56

                    There is an assessment of pain and other symptoms using a validated instrument

                    Process indicator

                    All settings

                    Changed

                    Personnel palliative care services

                    A. Staff

                    57

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Physician

                    Structure indicator

                    All settings

                    Changed

                    58

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Nurse

                    Structure indicator

                    All settings

                    Changed

                    59

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Spiritual/religious caregiver

                    Structure indicator

                    All settings

                    Changed

                    60

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Psychologist/Psychiatrist

                    Structure indicator

                    All settings

                    Changed

                    61

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Social worker

                    Structure indicator

                    All settings

                    Changed

                    62

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Physiotherapist

                    Structure indicator

                    All settings

                    Changed

                    63

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Occupational therapist

                    Structure indicator

                    All settings

                    Changed

                    64

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Dietitian

                    Structure indicator

                    All settings

                    Changed

                    65

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Bereavement counselor

                    Structure indicator

                    All settings

                    Changed

                    66

                    The multidisciplinary team that provides palliative care consists of at least one of the following disciplines: Pharmacist

                    Structure indicator

                    All settings

                    Changed

                    B. Education and training for staff/volunteers

                    67

                    New staff receives a standardised induction training

                    Process indicator

                    All settings

                    Changed

                    68

                    All team members have certified (accredited?) training in palliative care, appropriate to their discipline

                    Process indicator

                    All settings

                    Changed

                    69

                    All volunteers have training in palliative care.

                    Process indicator

                    All settings

                    Combined/ Changed

                    C. Support systems

                    70

                    All team members have an annual appraisal

                    Process indicator

                    All settings

                    Changed

                    71

                    All team members who professionally deal with loss have access to a program for care for the carers

                    Process indicator

                    All settings

                    Changed

                    72

                    Satisfaction with working in the team is assessed (e.g. Team Climate Inventory)

                    Process indicator

                    All settings

                    Changed

                    D. Organisation of care

                    73

                    Palliative care services work in conjunction with the referring professional/team

                    Process indicator

                    Inpatient setting indicator

                    New developed

                    74

                    There is a regular interdisciplinary/multi-professional meeting to discuss palliative care patients: daily meetings to discuss day-to- day management of palliative care patients

                    Process indicator

                    All settings

                    Combined/ Changed

                    75

                    There is a regular interdisciplinary/multi-professional meeting to discuss palliative care patients:weekly (inter- and multidisciplinary) meeting to review palliative care patients referrals and care plans

                    Process indicator

                    All settings

                    Combined/ Changed

                    E. Information sharing

                    76

                    All relevant team members are informed about patients who have died

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    Documentation of clinical data

                    A. Clinical record (All settings)

                    77

                    For patients receiving palliative care a structured palliative care clinical record is used

                    Process indicator

                    All settings

                    Changed

                    78

                    The palliative care clinical record contains evidence of documentation of the following items: Clinical summary

                    Process indicator

                    All settings

                    Changed

                    79

                    The palliative care clinical record contains evidence of documentation of the following items: Physical aspects of care

                    Process indicator

                    All settings

                    Changed

                    80

                    The palliative care clinical record contains evidence of documentation of the following items: Psychological and psychiatric aspects of care

                    Process indicator

                    All settings

                    Changed

                    81

                    The palliative care clinical record contains evidence of documentation of the following items: Social aspects of care

                    Process indicator

                    All settings

                    Changed

                    82

                    The palliative care clinical record contains evidence of documentation of the following items: Spiritual, religious, existential aspects of care

                    Process indicator

                    All settings

                    Changed

                    83

                    The palliative care clinical record contains evidence of documentation of the following items: Cultural aspects of care

                    Process indicator

                    All settings

                    Changed

                    84

                    The palliative care clinical record contains evidence of documentation of the following items: Care of imminently dying patient

                    Process indicator

                    All settings

                    Changed

                    85

                    The palliative care clinical record contains evidence of documentation of the following items: Ethical, legal aspects of care

                    Process indicator

                    All settings

                    Changed

                    86

                    The palliative care clinical record contains evidence of documentation of the following items: Multidimensional treatment plan

                    Process indicator

                    All settings

                    Changed

                    87

                    The palliative care clinical record contains evidence of documentation of the following items: Follow up assessment

                    Process indicator

                    All settings

                    Changed

                    B. Timely documentation

                    Inpatient setting (Hospital, Palliative care unit, Hospice, Nursing home)

                    88

                    Within 24 hours of admission there is documentation of the initial assessment of: Prognosis, Functional status, Pain and other symptoms, Psychosocial symptoms, The patient‘s capacity to make decisions

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    89

                    There is documentation that patients reporting pain or other symptoms at the time of admission, had their pain or other symptoms relieved or reduced to a level of their satisfaction within 48 hours of admission

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    90

                    There is documentation about the discussion of patient preferences within 48 hours of admission

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    91

                    A discharge/transfer summary is available in the medical record within 48 hours after discharge/transfer

                    Process indicator

                    Inpatient setting indicator

                    Changed

                    All settings

                    92

                    There is documentation of pain assessment at 4 hour intervals

                    Process indicator

                    All settings

                    Changed

                    93

                    The discussion of patient‘s preferences is reviewed on a regular basis (in parallel with disease progression) or on request of the patient

                    Process indicator

                    All settings

                    Changed

                    94

                    There is documentation that within 24 hours after patient transfer, the responsible physician in the receiving setting has visited the patient

                    Process indicator

                    All settings

                    Changed

                    95

                    There is documentation that within 24 hours after patient transfer, the new palliative care team in the receiving setting has visited the patient

                    Process indicator

                    All settings

                    Changed

                    Quality and safety issues

                    A. Quality policies

                    96

                    The palliative care service has a quality improvement program

                    Process indicator

                    All settings

                    Changed

                    97

                    There is documentation whether targets set for quality improvement have been met

                    Process indicator

                    All settings

                    Changed

                    98

                    Clinical audit are part of the quality improvement program

                    Process indicator

                    All settings

                    Changed

                    99

                    The setting uses a program about early initiation of palliative care (e.g. the Gold Standards Framework)

                    Process indicator

                    All settings

                    Changed

                    B. Adverse events

                    100

                    There is a register for adverse events

                    Process indicator

                    All settings

                    Changed

                    101

                    There is a documented procedure to analyse and follow up adverse events

                    Process indicator

                    All settings

                    Changed

                    C. Complaints procedure

                    102

                    There is a patient complaints procedure

                    Process indicator

                    All settings

                    Changed

                    Reporting clinical activity of palliative care services

                    103

                    The palliative care service uses a database for recording clinical activity

                    Process indicator

                    All settings

                    Changed

                    104

                    The following is part of the database: Diagnosis, Date of diagnosis, Date of referral, Date of admission to the palliative care service, Date of death, Place of death, Preferred place of death

                    Process indicator

                    All settings

                    Changed

                    105

                    From the database the service is able to derive: Time from diagnosis to referral to palliative care, Time from referral to initiation of palliative care, Time from initiation of palliative care to death, Frequency of unplanned consultations with the out-of-hours service for palliative care patients who are at home, Frequency of unplanned hospital admissions of palliative care patients, Percentage of non-oncological patients receiving palliative care

                    Process indicator

                    All settings

                    New developed

                    106

                    Based on the database, an annual report is made about the service

                    Process indicator

                    All settings

                    Changed

                    Research

                    107

                    There is evidence that the palliative care service is involved in research in palliative care (e.g. authorship of publications, research grants)

                    Process indicator

                    All settings

                    Changed

                    Education

                    108

                    All health and social care students have standardised learning objectives for basic training in palliative care

                    Process indicator

                    All settings

                    Changed

                    109

                    All health and social care professionals have standardised learning objectives for continuing basic training in palliative care

                    Process indicator

                    All settings

                    New developed

                    110

                    There is a program for specialised training in palliative care for professionals working in a service that provides specialised palliative care

                    Process indicator

                    All settings

                    New developed

                    3. Based on this meeting, adaptations were made and a new draft QI set was presented in the second steering group meeting in October.

                    Results

                    Search flow

                    The literature search resulted in 541 papers, including a previous systematic review on quality indicators for palliative care [8]. Most of the papers came from the database search (n=527), followed by the hand search (n= 29) and least of grey literature search (n=14).

                    In the screening process 16 duplicates were identified, and titles and abstracts of 511 papers were searched. Of these, 389 documents were excluded, as they did not contain QIs. Full papers were obtained of 122 publications, from which 63 papers were included; 57 resulting from the database search [1268] and another six papers from the additional hand searches (Figure  1) [6974].
                    http://static-content.springer.com/image/art%3A10.1186%2F1472-6963-12-381/MediaObjects/12913_2011_2333_Fig1_HTML.jpg
                    Figure 1

                    Flow chart literature search.

                    Results grey literature search

                    The grey literature search yielded seven papers, deriving from Belgium, the Netherlands and the UK [9, 7580]. These sources included government sites, national health organisations and national institutes (Figure  1). This additional search resulted in the development of 53 QIs, divided over almost all domains (see Additional file 1).

                    QI development

                    Sixhundred-thirtyfive QIs were derived from this literature review. After screening of duplicates, selecting process and structure QIs and combining QIs covering the same topic, the remaining 151 QIs were organised in the framework and discussed in the first steering group meeting. The two steering group meetings resulted in a reduction from 151 to 110 QIs (Additional file 1: Appendix C) (Figure  2). For instance the domain about finance QIs was excluded for the final set as the QIs were more useful on national level than in the setting specific palliative care institutions.
                    http://static-content.springer.com/image/art%3A10.1186%2F1472-6963-12-381/MediaObjects/12913_2011_2333_Fig2_HTML.jpg
                    Figure 2

                    Flow chart quality indicator development.

                    The rest of the QIs were distributed over the framework (Table  1) [10].

                    The majority of the 110 QIs were process QIs (n=76), the other structure QIs (n=34). Some of the QIs (n=24) were only applicable in specific settings; ten in primary care, thirteen in inpatient settings and one in home care. The others were meant for all settings that deliver palliative care.

                    Twenty-four QIs were developed based on organisational aspects found in literature (Table  1, QI 51). Finally, several QIs (n= 86), were changed in their presentation of text during the procedure. For example, originally developed QIs for other settings like the intensive care unit, were adapted to make them appropriate for palliative care settings.

                    Discussion

                    We were able to develop an international framework with 110 QIs to assess the organisation of palliative care in several kind of settings. To our knowledge, this study presents the first systematically developed international set of QIs on this topic. Part of the QIs are setting specific, whereas others will be applicable in all kind of settings that deliver palliative care.

                    Where Pasman et al. performed a systematic review on all kind of QIs for palliative care, and Pastrana et al. focused on outcome indicators for Germany, we focused on process and structure QIs [8, 81]. By using an international perspective and by not limiting the study to symptom control, our study follows the recommendations of Ostgathe et al. [82]. Our set also contains two QIs that are linked to the World Health Assembly’s proposed global health indicator ‘Access to palliative care assessed by morphine-equivalent consumption of strong opioid analgesia (excluding methadone) per death by cancer’, but without the restriction to patients with cancer [83].

                    Strength and limitations

                    We chose an approach with several consecutive methodological steps to develop a set of QIs. Of those aspects that were considered important for the organisation of palliative care but of which no QIs could be found, we developed QIs ourselves [84]. Of those QIs that were developed for a restricted group of patients or setting (e.g. ICU or vulnerable elderly) we checked whether we could rephrase them into QIs for more types of settings or palliative patients. Defining QIs in a consensus procedure is a good option if scientific literature is not yet available [7], particularly because it combines several methods to improve validity. Using a group approach has the advantage that participants can share their expertise and experience. Groups often make better decisions than individuals [85].

                    The naming of QIs as process or structure indicators can be discussed. Yet, this only influences the categorisation and not the content, importance or use of a QI.

                    Another strong aspect of our procedure is the inclusion of grey literature, which created the possibility to include documents from important although not scientific sources [86].

                    As the Europall project was a collaboration of seven European countries, only experts of these countries were represented in the steering group meetings. Other European countries, with different health care and financing systems, cultures and palliative care, were not involved at this stage.

                    This first step resulted in a set of structure and process QIs, that can help professionals or settings to measure the quality of care of their setting. In a next step, a subset will be developed of which each QI is applicable in the seven participating countries.

                    Based on a modified RAND Delphi method the following set will be interesting for international comparison. The advantage of this comprehensive set enables each country and each setting the opportunity to see all QIs that are available on this topic.

                    The last step will describe a pilot study to test the set of QIs on face-validity, applicability and discriminative power. This includes almost all (26) European countries. These studies will be published separately.

                    Further research

                    The final set can be used to provide feedback to settings or countries to reflect on their performance, for supporting quality improvement activities, accreditation, research, and enhancing transparency about quality. They can be used to evaluate the implementation of the WHO definition and the recommendations of the council of Europe [1, 4].

                    From 2011 to 2015, a follow-up project to Europall called IMPACT (funded by the EU 7th framework) will develop and test strategies to implement these QIs.

                    Conclusions

                    This review resulted in the first comprehensive framework of QIs for the organisation of palliative care.

                    Declarations

                    Acknowledgements

                    The authors are grateful to the EAHC (Executive Agency for Health and Consumers) for funding the Europall project. We would like to thank Hristina Mileva from EAHC specifically for her help and support. Further our thanks also go to the many individuals and organisations in the seven countries that contributed information to the project. We are especially grateful to all those who shared their views with us.

                    Belgium: Johan Menten

                    England: Sam Ahmedzai, Bill Noble

                    France: Jean-Christophe Mino

                    Germany: Eberhard Klaschik, Birgit Jaspers

                    Poland: Wojciech Leppert, Sylwia Dziegielewska

                    Spain: Xavier Gomez Batiste Alentorn, Silvia Paz, Marisa Martinez Munoz

                    Authors’ Affiliations

                    (1)
                    Department of Anaesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Centre
                    (2)
                    Department of Radiotherapy-Oncology and Palliative Medicine, University Hospital Leuven
                    (3)
                    Academic Unit of Supportive Care, School of Medicine and Biomedical Sciences, The University of Sheffield
                    (4)
                    Department of Science and Research in Palliative Medicine, University of Bonn, Malteser Hospital Bonn/Rhein-Sieg
                    (5)
                    Réseau de Santé
                    (6)
                    Sorbonne Paris Cité, Public Health, Université Paris Descartes
                    (7)
                    AP-HP, Cochin Teaching Hospital, Palliative Medicine

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