Gli indicatori di qualità e strumentiper valutazione (outcomes) nelleCure Palliative

(Outcomes and quality indicators in palliative care)

Irene J Higginson

Cicely Saunders Institute, King’s College Londonwww.csi.kcl.ac.uk

WHO Collaborating Centre for Palliative

Care & Older People

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Patients at the end of life: priorities• Patient groups

• patients with end-stage chronic obstructive pulmonary disease (COPD) (n = 96) plus a family member or friend for a subset of these patients (n = 60),

• a sample of hospice patients (n = 93) and a family member or friend (n = 92),

• a sample of end of life patients (n = 163) and their “study partners” (n = 166) in a trial of complementary comfort care

Downey L, et al J Pain Symptom Manage. 2009 Feb;37(2):175-88.

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Top set of priorities (out of 28)• Time with family and friends• Pain under control (Highest in hospice group) • Breathing comfort (Higher in COPD group) • Dignity and self-respect• At peace with dying• Human touch • Avoid strain on loved ones• Avoid life support• Goodbyes said• Bladder and bowel control• Unafraid of dying• Laughter and smiles• Health care costs covered (Canadian study)• Control over situation Downey L, et al J Pain Symptom Manage. 2009 Feb;37(2):175-88.

Will be able to produce a list of

what is important to public in Europe – and for different countries including Italy as a result of PRISMA project

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Monitorare la qualità oggi ..

• Criteri per una buona practica

• Include tutti i pazienti e i familiari

• Include tutti i clinici e i centri

• Potenzia il ruolo dei pazienti e dei familiari

• Lo scopo è cambiare l’ assistenza sulla base dei risultati

• Finanziamenti o accreditamento ritirati per i servizi che non raggiungono gli standard

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How is quality in health care measured?

• Structure/ inputs: resources, equipment, money

• Process: how resources are used (e.g. home visits, beds, clinics, drugs or treatments given)

• Output: productivity or throughput (e.g. rates of clinic attendance or discharge, inpatient throughput)

• Outcome: change in health status or quality of life that can be attributed to health care (Donabedian

1980) – direct relevance for patients & society

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Outcomes - reflect effect on patients and families

• Any end result that is attributable to health service intervention (UK Department of Health 1992)

• Change in a patient’s current or future health status that can be attributed to antecedent health care (Donabedian 1980)

• Health = total physical, mental and social well-being (WHO)

• Outcome can include satisfaction with care

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Outcomes in palliative care – need to reflect patient and family priorities.

Might include• Quality of life/ death• Control of pain & other

symptoms, physical and psychological

• Satisfaction with care• Meeting wishes for place

of care and death (e.g. at home)

• Resolution of fears, grief, anger

• Planning future events e.g. funeral

• Resolution of spiritual suffering

• Maintaining hope, dignity• Carer well being • Bereavement outcomes• Etc…

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Why should palliative care services measure outcomes of care?

1. To improve individual patient care: Obtain more detailed information about the patient and family in day-to-day practice, to aid and improve their care

• Screening for hidden problems or as checklist to alert clinicians of aspects of care they may have overlooked

• Monitoring changes or response to treatment in an individual

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What will measurement achieve?In routine clinical practice

• Identifying and prioritising problems

• Communication: (1) from patient to doctors and nurses and (2) between health staff and (3) between the patient and his/her family or friends

• Identify patient priorities to facilitate shared clinical decision making

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2. To gather evidence: Palliative Care is still a relatively new specialty with much to prove! If data is aggregated, analysed and reviewed it can be used as evidence of e.g. efficacy or cost-effectiveness. This can be used to:

• Justify continuation/ expansion of services• Secure resources for future services, e.g. convince

funders• Demonstrate ‘real’ benefit in quality markers

Why should palliative care services measure outcomes of care?

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Why should palliative care servcies measure outcomes of care?

3. To improve the quality of care provided by the service through audit:

• Identify potential areas for improvement • Feedback results to improve practice• Set standards of care • Monitor the achievement of standards of care• Contribute to development of national care standards

Patient & family have a right to quality care

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Getting started, planning for success

• SPREE• SMALL: simple with minimum disruption• PLAN: needs a clear plan and staff

commitment/involvement• REGULAR: collection of data and meetings• EXCHANGE: ideas with others doing

similar work• ENJOY: most important! Aim is for staff to

recognise outcome measurement as educational and relevant, not as threat

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Which outcome measure to choose?

Key aspects to consider

• What is the goal of the service / care?• What is the purpose of the measurement? → Need to measure multi-dimensional outcomes,

e.g. physical, psychological, social, spiritual & family well being

→ Need to choose an outcome measure that is relevant to these, and ideally developed for palliative care

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Information produced relates to individuals – patients and families

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Choosing: an outcome measure should:1. Be clinically relevant, include all relevant

domains2. Be appropriate & acceptable3. Be validated (e.g. against appropriate

measures or findings)4. Be stable / reliable5. Show clinically relevant change in the

patient6. Be brief

Example of how the Palliative Outcome Scale (POS) stands up to these criteria?

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Palliative Care Outcome Scale (P.O.S.)• Spazio per riportare i problemi principali. Che

cambiano nel tempo – per focalizzarsi sul individuo

• 10 domande, 5 risposte su una scala likert:• Dolore• Altri sintomi• Ansia (paziente)• Ansia dei familiari• Informazione ricevuta• Supporto dalla famiglia• Essere in pace con se stessi• Tempo perso• Aspetti practici

Verione per il paziente e per lo staff e per i familiari

Hearn J and Higginson IJ, Quality in Health Care,1999;8:219-227Higginson et al. Health Qual Life Outcomes. 2004; 29;2:68Higginson IJ, Gao W. Health Qual Life Outcomes. 2008 Jun 2;6:42.

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To download POS from the www

• www.csi.kcl.ac.uk• Choose ‘resources’• Enter pages on POS – can see versions• Complete user-registration (free to use) • Download copies, user guide• More information coming on the Prisma

web site – can find via csi.kcl.ac.uk

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1. Is the POS clinically relevant, does it include all relevant domains? Yes

• Initial development involving patients• Literature review; staff feedback (Europe,

Africa)

‘Made patient much more talkative; helped from a psychological point of view’

‘Reminds us to address issues we may easily forget’‘Helped to improve treatment and manage symptoms’‘It is not easy to use such forthright questions with people

we don't know well, but it gives a very complete picture of a person’s state.’

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2. Is the POS appropriate & acceptable? Yes

• Qualitative interviewing to map domains of patient & family concern (n=128)

• Cognitive interviewing to investigate understanding of the tool (n=73).

→ POS items mapped well onto qualitative data; cognitive interviewing showed good understanding with one exception

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3. Is the POS validated against appropriate measures / aspects? Yes

• Compared with (in different studies) • EORTC Quality of Life Measure• STAS• Missoula Vitas Quality of Life Index

• But some differences: • POS showed more differences in patients near the

end of life, where other measures showed all patients the same score

• POS included carers’ well being• POS had free report items

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4. Is the POS reliable ?Yes

• Test-retest reliability in stable patients: Original development showed stability in stable

day care patients (over 1 week) Adapted versions in Germany, Spain, African

POS showed stability over a short periods (when patients did not change)

→High intraclass correlation coefficients were found for all items, range 0.775 (symptoms) -0.892 (Total POS score)

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5. Does the POS show clinically relevant change in the patient? Yes

• Test for responsiveness to change (Wilcoxonmatched pairs test) found significant improvements (p<0.05) across 4 weekly time points for all items except ability to share feelings

E.g. Graph: change in pain, African data

3.26

1.84 1.59

2.3

0

1

2

3

4

5

T1 T2 T3 T4

p<0.001 p<0.001 p=0.012

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Results from use in a hospital team (n=30) in UK

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6. Is it brief to complete? Yes

Visit Mean Median SD Range

1 9.3 mins 7 mins 6.7 mins 1-35 mins

2* 7.8 mins 5 mins 7.2 mins 1.5-45 mins

Time to complete: 7 – 9 minutes

N=307, Missing =0

* Visit 2 5-48 hours after Visit 1

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Caregiver versus patient assessmentsEffect of caregiver burden on contemporary caregiver POS assessments

• 69 cancer patient and informal caregiver dyads

• Separately interviewed and completed• the patient and the caregiver version of the palliative outcome

scales (POS);• Also caregivers caregiving burden data were collected with the Zarit

Burden Inventory (ZBI, 22 items, 2 subscales).

• Found reasonable agreement between patients and caregivers for POS pain, service views and symptoms, but less for ‘psychological / emotional’ items

• Assessed effect of caregiver burden on level of agreementHigginson, Wei – Health Qual Life Outcomes. 2008 Jun 2;6:42

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Effect of caregiver burden on caregiver assessments: Results

• Disagreement for four POS item ratings was significantly associated with higher caregiving burden:

• “feeling anxious” • “share feeling” • “life worthwhile” • “feel good”

Higginson, Wei, Health Qual Life Outcomes 2008 Jun 2;6:42

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Outcome measures – next steps Building on results of PRISMA work

Resources for training in use of measurement1. Website with guidance and training materials

(developing from survey (Bausewein) and whole project) – www.prismafp7.eu

2. POS and POS-S card and pocket guide for use (developing from Ferreira / Portugal led work)

3. Summer school and training courses in Cicely Saunders Institute

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Outcome measures – next steps Building on results of PRISMA work

Developing standardised approaches to measurement

1. Core POS and potential modules for add on2. POS–Lite (an even shorter version of POS) 3. Versions of POS in different languages4. POS and POS-S card and pocket guide for use

(developing from Ferreira / Portugal led work)5. Summer school and training courses in Cicely

Saunders Institute

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Centre in South London, resource for visitors, improved training, web and internet links, research and evaluation capacity, support

and information for patients and familiesWHO Collaborating Centre for Palliative Care and Older People

Cicely Saunders Institute

–Initiative to

improve collaboration,

research, development, capacity and education in

palliative care

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New European WHO guidance on better practice in palliative care for older people

• Need for palliative care is increasing in Europe because of:

• Ageing• Changes in the way

people die• Booklet – due out late

2010 – gives examples of best practice

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Importance of outcomes measurement

possibilities in Europe and in Africa

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Summary• Outcome – measures ‘results’ of care• Value in assessment – immediate benefit to

patients, evaluation, improve care• SPREE – start in a planned way, small• 6 criteria for choosing a measure• POS – well validated and widely used• Plan to develop training and support • Cicely Saunders Institute / PRISMA / WHO

Guidance to develop further initiatives

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AcknowledgementsThanks to the patients, families & staff who

participated, to European Community, Big Lottery, Cicely Saunders International, and other funders of this work

Thanks to Lucy Selman, Claudia Bausewein, Richard Harding, Franco Toscani and other colleagues

For more information www.csi.kcl.ac.uk

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References• Higginson IJ, Gao W. Caregiver assessment of patients with advanced cancer: concordance

with patients, effect of burden and positivity. Health Qual Life Outcomes. 2008 Jun 2;6:42. • Currow DC, Eagar K, Aoun S, Fildes D, Yates P, Kristjanson LJ. Is it feasible and desirable to

collect voluntarily quality and outcome data nationally in palliative oncology care? J Clin Oncol. 2008 Aug 10;26(23):3853-9.

• Eisenchlas JH, Harding R, Daud ML, Pérez M, De Simone GG, Higginson IJ. Use of the palliative outcome scale in Argentina: a cross-cultural adaptation and validation study. J Pain Symptom Manage. 2008 Feb;35(2):188-202

• Powell RA, Downing J, Harding R, Mwangi-Powell F, Connor S. Development of the APCA African Palliative Outcome Scale. Journal of Pain and Symptom Management (2007) 33(2): 229-232

• Bausewein C, Fegg M, Radbruch L, Nauck F, von Mackensen S, Borasio GD, Higginson IJ. Validation and clinical application of the german version of the palliative care outcome scale. J Pain Symptom Manage. 2005 Jul;30(1):51-62.

• Dunckley M, Aspinal F, Addington-Hall JM, Hughes R, Higginson IJ. A research study to identify facilitators and barriers to outcome measure implementation. Int J Palliat Nurs. 2005 May;11(5):218-25.

• Higginson IJ, Donaldson N. Relationship between three palliative care outcome scales. Health Qual Life Outcomes. 2004 Nov 29;2:68.

• Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999 Dec;8(4):219-27.