Development of an Advanced Symptom Management System for monitoring and managing chemotherapy related symptoms

Development of an Advanced
  Symptom Management System for
      monitoring and managing
   chemotherapy related symptoms
              The ASyMS©-YG Study

            Professor Faith Gibson and Dr Rachel Taylor

ASyMS research team: Great Ormond Street Hospital and London
                   South Bank University

                        © Cancer Care Research Centre,
                           University of Stirling 2006

Research Team
•   Faith Gibson, Chief Investigator
•   Susie Aldiss, ASyMS YG
•   Rachel Taylor, ASyMS YG
•   Chris Eiser, Psychologist, Sheffield
•   Sheila Lane, Clinician, Oxford
•   Roma Maguire, ASyMS Adult, Stirling
•   Jolene Skordis-Worrall, Health Economist,
    London
•   Paul Donachie, Statistician, Leicester
•   Meurig Sage, Technical developer, Glasgow
•   Nora Kearney, ASyMS Adult, Stirling

Background
• WISECARE – earlier work involving handheld computers to monitor
   patients receiving chemotherapy.

• Information and communication technologies have opened up new
   possibilities in the field of health care (Suzuki and Calzo 2004;
   Suzuki and Beale 2006; Ruland et al, 2006, 2007).

• Increasing emphasis on promotion of patient self-care.
• Mobile phone technology provides a creative medium for the
   development of a system to monitor and support young people
   receiving chemotherapy.

• Study linked to The University of Stirling (the hub) to other fields
   (spokes), e.g. young people, palliative care, adult cancer care
   (Kearney et al. 2006; Maguire et al. 2005)

The ASyMS©
System

The        ASyMS© System
      Patient completes symptom questionnaire
                               

Data is sent in real time from the mobile phone via the
         server to the nurse at the clinical site
                                               
     Problematic symptoms           Patients receive a message
     immediately generate                with self-care advice in
     alerts on the dedicated               response to reported
     pager system nurses carry                        symptoms
           

                                                     

   Nurse views the patient’s                  Patients can also
   symptom data on the                   view symptom graphs
   ASyMS-YG© website                     and information pages
   and contacts patient                             at any time
    to offer advice

Example of the ASyMS©-YG
     questionnaire

Symptoms:
                   Alerts
          – No alert triggered
 Normal
 Amber alert
  Patient experiencing symptoms that are not severe or
  life-threatening
   Nurse should check website and phone the young
  person within 4 hours

 Red alert
  Patient has a high temperature and/or is experiencing
  symptoms that are severe or life threatening
   Nurse should check website and phone the young
  person within 30 minutes

Participant 5
        7

        6

        5

        4
Score

        3

        2

        1

        0
            1   2   3   4    5   6   7   8    9   10 11 12 13 14 15 16 17 18 19

                                             Day

            Diarrhoea       Mouth Problems        Nausea   Vomiting   Weight Loss

The Study

The MRC Framework

              (Campbell M et al (2000) BMJ;321:694-696

Copyright ©2000 BMJ Publishing Group Ltd.

Phase 1
• 5 young people identified which symptoms would be
 assessed on the phone symptom questionnaire
• Symptoms chosen from list of 30 on the Memorial
 Symptom Assessment Scale (Collins et al, 2000)
• Top 5:   Nausea
            Vomiting
            Mouth sores
            Diarrhoea
            Weight loss

Phase 2
• 25 young people: Aged 13-18 years
• 13 female, 12 male varied clinical diagnosis

• Completed symptom questionnaire on
  days 1 to 14 of one cycle of chemotherapy
• Reported on 5 symptoms plus any other
  symptoms and temperature.

Phase 2 data
• Pre study data:
  - Questionnaire data from young people, parents and
    health professionals
• Post study data:
  - Questionnaire data from young people and parents
  - Symptom reports
  - Interview data from young people and health
    professionals
  - Data from consultation session with health
    professionals

The Findings

Pre questionnaire findings (1)
• Positive
• 84% thought it would help them to
 communicate with health professionals if
 put into practice
• Pre-study perceptions of taking part:
  -   8 ‘rewarding’
  -   15 ‘valuable’
  -   8 ‘educational’
  -   20 ‘interesting’

Pre questionnaire findings (2)
• ‘It will help me see the pattern of my symptoms, whether
  they’re increasing or decreasing’ (young person).
• ‘I can keep track of my symptoms and phone the hospital if
  necessary’ (young person).
• ‘I think it is good to help people of this age group and make
  them feel more comfortable and in control about their worries
  and symptoms’ (young person).
• ‘As a long term support tool for chemo patients this will be
  invaluable’ (father).
• ‘I think this is a fantastic idea, it would give teenagers more
  control over their symptoms and what to do about them’
  (mother).

Symptom Reports
• Most common:
     - nausea ( reported by 20 young people, 80%)
     - sore mouth (reported by 18 young people, 72%)
• Above symptoms most severe and bothersome
• 37 ‘other’ symptoms reported in total
• Top 6 ‘other’ symptoms:
     - Tiredness           - Headache
     - Back ache/pain      - Taste changes
     - Constipation        - Tummy ache/pain.

Post study questionnaire findings

• All young people said had enough training to use the
  phone and used it without help

• Majority said symptom questionnaire was ‘simple to
  understand’ and ‘easy to complete’

• Some technical problems/issues reported
• Thought nausea, vomiting, mouth sores and diarrhoea
  were relevant but weight loss too hard to report on daily

What the young people said…
      Reassurance of being monitored

    ‘Mean if they (doctors and              ‘Feel safer that
nurses) thought that symptom was     someone qualified is looking
  unusual they could tell how (to)   at your symptoms and would
 deal with it otherwise may not do    notice something out of the
         anything about it’                    ordinary’

      ‘I find it very useful,         ‘I think the main benefit for
 particularly if it stops people     me would be to put my mum’s
worrying at times and panicking          mind at rest more than
  about what they have got’                      anything’

What the young people said…
       Aid communication between young people
                       and health professionals
            It can help them
 remember their symptoms because
when you come in for the first day of          Before you start your treatment
a cycle doctors always ask you about       they ask how you’ve been and after
the symptoms over like the last cycle        like the third time you get tired of
  and it’s sometimes kind of hard to     saying it…they could just bring it up on
     remember what you had on
                each cycle                  the computer and they know what
                                           you’ve been like and they could just
                                         check if they needed to check particular
                                            things, you wouldn’t have to keep
                                                    going over and over it

          They’ll (doctors and nurses)
          be able to know exactly what
                  is happening

What the young people said…
Reduce symptoms and increase control
 The nurses can tell you what to      I felt in control and I liked
do to help reduce your symptoms       that you could see if your
                                     temperature had improved

       Can see how symptoms change
              for other cycles

                                     It will help me see the pattern
                                        of my symptoms, whether
                                           they’re increasing or
  Hopefully you know you can                    decreasing
   nip symptoms in the bud

Health Professionals’ Comments (1)
 Increased control for young people:
 • Take back some control of their disease
 • Gave them some independence and control back into managing their
   own life
 • Allows control over their own symptoms and management of care

 Increased support for young person/family:
 • Support/reassurance from medical team

 Early intervention:
 • Respond to symptoms more quickly
 • Early management of side effects
 • Prevent hospitalisation

Health Professionals’ Comments (2)
    Aid communication between young people and
    health professionals:
 • ‘It will enable patients to give a clearer report of their symptoms to
    health professionals’
 • ‘Would be great for patients to engage in appointments with, extra
    information on how they have been’
 • ‘You know they (young person) come in and you say, “is anything
    the matter?” and they go, “Oh, it’s been fine” and you find out two
    cycles later that actually they’ve had terrible diarrhoea for three
    cycles….they probably just thought it was something they should
    put up with’
 • Would demonstrate that ‘what they (young people) have to say and
    report is important’

Health Professionals’ Comments (3)

 Improve knowledge and understanding:
 • ‘Learn about what symptoms bother teenagers
   most’
 • ‘See trends in symptom progression’
 • ‘Improved knowledge of toxicities on patients’
 • ‘It would give us better understanding of what is
   actually happening when they are at home’

Phase 3
1) Refined symptom questionnaire based on phase 2
   data:
     - Main symptoms to be assessed: nausea,
       vomiting, diarrhoea, mouth sores, fatigue,
       constipation, pain (body map)
     - Young people checked wording of revised
       questionnaire

2) Development of alert system:
      - Consultation session with health professionals
      - Proposed alerts sent out to nurses and
        clinicians for review and then refined

Phase 3
3) Development of self-care advice young people receive
   in response to reported symptoms:
    - Consultation sessions held with health
      professionals and young people
    - Interviews with young people
    - Checked literature/patient information
    - Self-care advice written up and wording checked by
      young people

Phase 3
4) Pilot/exploratory trial with alerting and symptom
  advice messages put into place
       – Test all study procedures and measures in
         preparation for larger trial
   • 10 young people aged 13-18 years with:
        - Lymphoma
        - Soft tissue sarcoma
        - Bone tumour
   • Randomised to use the system/receive standard care
      for one cycle

Where are we
now?

Phase 4
• Randomised controlled trial involving 150 young people
  randomised to use the system throughout their
  chemotherapy/ receive standard care.
• Six sites
• Outcome measures include: level of symptoms, quality
  of life, anxiety, communication with health professionals
• Begin to embed system into daily practice
• Expand system to use with different groups (e.g. young
  people with leukaemia)

Summary
• MRC framework an important guide for
 complex interventions
• Involvement of professionals
• Involving users
   Possible
   Important
   Enjoyable

Thank you
http://www.cancercare.stir.ac.uk/projects/
              asyms.htm

        Final report available from
           Gibsof@gosh.nhs.uk