How to do a Palliative Care Needs Assessment for your Country

Document Sample
How to do a Palliative Care Needs Assessment for your Country Powered By Docstoc
					How to do a Palliative Care Needs
 Assessment for your Country
           Irene J Higginson

       www.kcl.ac.uk/palliative
• Defining need
• Pragmatic ways to estimate need
  – Epidemiological data (and mistakes to avoid)
  – Comparison with services available
  – Case example : a London strategy
• Evidence of effectiveness
                     Need
• For health - and social - care
• Many sociological definitions ( see for example
  Bradshaw’s taxonomy of need)
 Need: who decides and how?
• What an individual feels they want (felt need)?
• What an individual demands (expressed need)?
• What a professional thinks an individual wants
  (normative need)?
• How we compare with others areas or situations
  (comparative need)?
  A pragmatic approach to needs
          assessment:
• NHS Executive defined need for health care - as
  ability to benefit from care - three components




                                  Effectiveness and
      Services                    cost-effectiveness
      available                   national and local
    Epidemiology: getting to the numbers
       who might need palliative care
• Numbers and causes of death can give
  indication of need for palliative care -
• Better if coupled with information on symptoms,
  emotional, social and spiritual problems
• Note, have to allow for:
   – Data inconsistencies and gaps (e.g. cause of death)
   – Different diseases have different patterns of
     progression
         Deaths in England and Wales,
       2002 recorded death registrations:
• Total 540,000 deaths in 52 million population
• i.e.: 10.4 deaths per 1,000 ‘average England and
  Wales’ population
• Like your countries, circulatory system is number
  one cause (42% of deaths), cancer second
  (25%)
(Source: Office of National Statistics, 2002
  population and mortality data)
             Predicting need
• So in UK, an area of 250,000 population will
  have around 2,500 deaths per year (200 per
  month)
• 1,100 will be from circulatory disorders
• 650 will be from cancer

• 75% of those who die will be aged over 65 years
     How many deaths will you have?
                                Expected number of annual Actual number of
                 Population     deaths if rate similar to       deaths, would be
Country          (m)            England and Wales               higher
Bulgaria                   7.87                          81,800                ?x2
Croatia                    4.66                          48,500                ?x2
Czech republic            10.26                         106,700              ? x 1.5
Georgia                     5.2                          54,000              ? x 2.5
Hungary                    9.92                         103,200              ? x 2.5
Lithuania                  3.69                          38,400              ? x 2.5
Moldovia                   4.82                          50,100                ?x3
Mongolia                   2.52                          26,200                ?x3
Poland                    38.58                         401,200                ?x2
Romania                   22.39                         232,900                ?x2
Sloviakia                   5.4                          56,200                ?x2
Slovenia                   1.98                          20,600              ? x 1.5
           Do’s and don’ts
         when using death data
• If possible get the ACTUAL NUMBERS
• Rates can be misleading - and crude (rather than
  age standardised) rates are what you need here
• Don’t add rates together
• Recorded cause of death is subject to fashions,
  country and cultural differences
• It can be inaccurate in older people where there
  are multiple causes
               Therefore -
          when using death data
• Get an epidemiologist to do estimates
• Be careful – and use ranges if unsure
• Train doctors in your countries to accurately record
  cause of death
• Try to get accurate statistics

Don’t worry too much there will still be plenty of need
Numbers of deaths
  are not enough
  – how many
  people who die
  from cancer or
  other conditions
  have symptoms
  and problems
  that would
  benefit from
  palliative care
     Prevalence of ‘symptoms’ in the last
                 year of life
             Pain


  Loss of appetite


Trouble breathing


     Constipation                                                        Cancer

        Vomiting
                                                                         Other terminal
                                                                         illnesses
   Patient anxiety


   Family anxiety                                             Percentage with symptom
                     0   10      20      30      40      50      60      70       80      90

        Source: Higginson I. Epidemiologically based needs assessment for palliative and terminal care,
        Radcliffe Medical Press 1997
      Among 3,000 cancer deaths, estimated numbers
         experiencing problem in last year of life
    (for England and Wales, would be within population of just over
                             one million)
                         % with symptom Number with symptom
Pain                                  84                2520
Loss of appetite                      71                2130
Vomiting or feeling sick              51                1530
Sleepiness                            51                1530
Trouble with breathing                47                1410
Constipation                          47                1410
Depression                            38                1140

  Source: Higginson I. Epidemiologically based needs assessment for palliative and
  terminal care, Radcliffe Medical Press, 1997
     Among 7,000 non-cancer deaths -estimated patients
             with problems in last year of life
    (for England and Wales, would be within population of just over one
                                 million)

      P a in                                        4600
      L o s s o f a p p e t it e                    2600
      T r o u b le b r e a t h in g                 3360
      C o n s t ip a t io n                         2190
      V o m it in g , n a u s e a                   1850
      P a t ie n t a n x ie t y                     2620
      F a m ily a n x ie t y                        3380



Source: Higginson I. Epidemiologically based needs assessment for palliative
and terminal care, Radcliffe Medical Press, 1997

                      Department of Palliative Care and Policy
Possible trajectories – will vary
       Palliative care: levels
     may need these for different
             conditions
 approach - employed by every doctor and nurse
  (suggests major need for education)
 procedures and techniques - important adjuncts
  (specialists in anaesthetic techniques,
  radiotherapy for bone pain)
 specialist - core speciality of units and services
  providing multi-professional care in hospices, in-
  patient units, home, hospital teams, day care.
The numbers of people with need
    can be compared with the
  numbers of people receiving
  services to estimate how well
        need is being met
    A case
  example:
 developing a
   London
 Strategy for
Palliative Care
                London, UK
• Population - 7 million, 14% of the of England
• High deprivation and poorer health status (2
  million), relative affluence (2.3 million)
• 1991 census, 80% white, 8% Black, 10% Asian
  and 2% other. At a borough level, black or
  minority ethnic groups range from 4 - 45%.
  Diversity increasing.
• Ageing - increasing.
Main causes of yearly 65,000
     deaths in London
           9%               Cancer
      4%              24%
  4%                        Circulatory
                            system
                            Respiratory
18%
                            Neurological

                            Injury and
                            poisoning
                            Other
                41%
Where would palliative care help?
• Progressive cancers, increasingly chronic.
• Progressive non-malignant diseases. E.g. heart
  failure, stroke, chronic obstructive pulmonary
  disease, motor neurone disease, ALS, dementia
  and AIDS/HIV.
• Children's terminal and hereditary diseases,
  including degenerative disorders such as
  muscular dystrophy and cystic fibrosis.
• Have different trajectories.
Almost 60,000 patients each
year would benefit from good
palliative care in London

At least an equal number of
carers and family members
would also benefit
An ‘average’ GP practice of 2,500
population will have 24 deaths per year (2
per month) of whom 20 would have a
period of progressive illness.

A hospital serving an area of 250,000 (e.g.
Hillingdon) would in that area have each
year: 560 cancer deaths, 1230 from
circulatory diseases, 300 from respiratory
disease, 60 from other diseases, where
patients and carers would benefit from
palliative care.
 Specialist palliative care services
• In-patient - 17 hospice or units - 410 beds
• 11 voluntary - 1/3 funded by NHS
• 6 (86 beds) NHS (20%, less than national
  average)
• Provision rank: 3rd out of 8 for n. of beds per
  million population, 4th out of 8 for n. of patients
  admitted
     Beds per million population, new
    patients per 10 million population:
         health regions in England
West Midlands
        Trent
  South West
   South East
N & Yorkshire
   North West
                                      New patients/
      London                          10 million
                                      Beds/Million
      Eastern

                0   25   50     75        100
          Home care nurses and doctor session per
                    million population

     West Midlands

               Trent

        South West

         South East

Northern & Yorkshire
                                          Doctor sessions
         North West                       /week/million

            London                        Home care
                                          Nurses/million
            Eastern


                   0.00   10.00   20.00   30.00       40.00
   Day care places / per year/ per
         million population
West Midlands

         Trent

  South West

   South East

 N & Yorkshire

   North West

       London

      Eastern

                 0   5000   10000   15000   20000
Estimated yearly numbers of cancer deaths, cancer
 deaths with pain, and cancer patients who receive
        different services in London region.
                     Cancer deaths

           Cancer deaths with pain

                   Hospital support

                         Home care

  In-patient hospice /palliative care

                 Marie Curie Nurse

                           Day care

                                        0   4,000 8,000 12,000 16,000
                                            Number per year
Estimated yearly numbers of non-cancer deaths, non-
 cancer deaths with pain, and who receive different
             services in London region

            Non-cancer deaths

  Non-cancer deaths with pain

               Hospital support

                     Home care

   In-patient hospice /palliative
               care

             Marie Curie Nurse

                       Day care

                                    0   10,000 20,000 30,000 40,000
What other data is useful?
   Also use information on patient wishes
   (e.g. for home care) and effectiveness
 • NHS Executive defined as ability to benefit from
   care - three components



                              Effectiveness and
Services                      cost-effectiveness
available                     national and local
     Evidence of effectiveness -
• Journal of Pain and Symptom Management
  2003;25:150-168 – the first meta-analysis
  showing the effectiveness of palliative care (plus
  an economic evaluation)
• www.nice.org.uk - International systematic
  literature review of the effectiveness of service
  configurations for supportive and palliative care
  in cancer, for UK government
• Local surveys and views may also be used
 Evidence of effective models of palliative care -
• Palliative home care teams – good evidence of
  benefit to patients, families and in training others,
  from many studies in many countries
• In-patient hospices, palliative care services – some
  evidence of benefit to patients and families
• Hospital based palliative care teams – some
  evidence of benefit to patients and families and of
  improving practice in the hospital
• Day care units, evidence that some patients like it,
  and some lesser use of other community services
                   Summary
• Epidemiological data can help in planning need for
  palliative care
• Based on number of deaths and likely prevalence
  of symptoms
• Can estimate numbers within a population with
  problems and compare with services received – do
  this with caution
• Local data on experience / services also important
• Evidence of effectiveness completes the picture