Development of an advanced Development of an advanced system management system system management system for monitoring and managing for monitoring and managing chemotherapy using mobile chemotherapy using mobile

phone technologyphone technologyDr Faith Gibson & Dr Rachel M TaylorDr Faith Gibson & Dr Rachel M Taylor

Patient Care Research & Innovation CentrePatient Care Research & Innovation CentreUCL Institute of Child Health and Great Ormond Street UCL Institute of Child Health and Great Ormond Street

Hospital for Children NHS Trust, LondonHospital for Children NHS Trust, London

Research TeamResearch Team• Faith Gibson, Chief InvestigatorFaith Gibson, Chief Investigator

• Susie Aldiss, ASyMS YGSusie Aldiss, ASyMS YG

• Rachel Taylor, ASyMS YGRachel Taylor, ASyMS YG

• Chris Eiser, Psychologist, SheffieldChris Eiser, Psychologist, Sheffield

• Sheila Lane, Clinician, OxfordSheila Lane, Clinician, Oxford

• Roma Maguire, ASyMS Adult, StirlingRoma Maguire, ASyMS Adult, Stirling

• Jolene Skordis-Worrall, Health Economist, Jolene Skordis-Worrall, Health Economist, LondonLondon

• Paul Donachie, Statistician, LeicesterPaul Donachie, Statistician, Leicester

• Meurig Sage, Technical developer, GlasgowMeurig Sage, Technical developer, Glasgow

• Nora Kearney, ASyMS Adult, StirlingNora Kearney, ASyMS Adult, Stirling

Technology in health careTechnology in health care

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

• More than 90% of young people aged More than 90% of young people aged 15 – 24 years own a mobile phone 15 – 24 years own a mobile phone (www.childwise.co.uk)(www.childwise.co.uk)

• More than 70% young people access More than 70% young people access the internet everyday the internet everyday (Coleman & Brooks 2009)(Coleman & Brooks 2009)

• The Advanced Symptom Monitoring The Advanced Symptom Monitoring System (ASyMS©)System (ASyMS©)

The ASyMS© SystemThe ASyMS© System

Patient completes symptom questionnairePatient completes symptom questionnaire

Data is sent in real time from the mobile phone via the Data is sent in real time from the mobile phone via the server to the nurse at the clinical siteserver to the nurse at the clinical site

Problematic symptoms immediately generate

alerts on the dedicated pager system nurses

carry

Patients receive a message with self-care advice in response to reported symptoms

Nurse views the patient’s

symptom data on the ASyMS-YG© website and contacts patient

to offer advice

Patients can also view symptom

graphs and information

pages at any time

The ASyMS©-YG The ASyMS©-YG studystudy

Copyright ©2000 BMJ Publishing Group Ltd.

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

The MRC FrameworkThe MRC Framework

ASyMS©-YG developmentASyMS©-YG development

Identifying symptoms

to be assessed on

the ASyMS©-YG

PDA

Testing the ASyMS©-YG

PDA and finding out

user perceptions

of the system

Risk modelling system for the alerts; self-care

guidelines; pilot the

procedure, technical

systems & trial design

Multi-centre,

randomised controlled

trial

Sustainability

Involving young peopleInvolving young people

1. Manipulation

8. Youth-initiated & adults sharing decisions

4. Assigned & informed

7. Youth-initiated & directed

6. Adult-initiated, shared decisions

5. Consulted & informed

3. Tokenism

2. Decoration

Hart (1997) Ladder of Participation, children’s participation: From tokenism to citizenship, UNICEFHart (1997) Ladder of Participation, children’s participation: From tokenism to citizenship, UNICEF

User involvementUser involvement

• Young peopleYoung people

• Health Health professionalsprofessionals Variety of health Variety of health

professionals professionals working in working in cancer carecancer care

• Key stakeholdersKey stakeholders Teenage Cancer Teenage Cancer

TrustTrust CLIC SargentCLIC Sargent

• ASyMS©-YG design: ASyMS©-YG design: symptom symptom questionnaire, questionnaire, development of self-development of self-care guidancecare guidance

• Study audit & Study audit & monitoring monitoring

• Assessing acceptability Assessing acceptability and effectiveness: is it and effectiveness: is it any good?any good?

Phase 1 (Pre-Phase 1 (Pre-clinical)clinical)

Phase 1 Phase 1

• Five young people identified the Five young people identified the symptoms to be assessed on the symptoms to be assessed on the ASyMS©-YG PDAASyMS©-YG PDA

• Symptoms chosen from the 30 on the Symptoms chosen from the 30 on the Memorial Symptom Assessment Scale Memorial Symptom Assessment Scale (Collins et al 2000)(Collins et al 2000)

• Top 5:Top 5: NauseaNausea VomitingVomiting DiarrhoeaDiarrhoea Mouth soresMouth sores Weight lossWeight loss

Example of the ASyMS©-YG Example of the ASyMS©-YG questionnairequestionnaire

Phase 2Phase 2

Phase 2Phase 2

• 25 Young people25 Young people Aged 13 – 18 yearsAged 13 – 18 years 12 male: 13 female12 male: 13 female Variety of diagnosesVariety of diagnoses

• Completed symptom questionnaire on Completed symptom questionnaire on days 1 – 14 of one cycle of days 1 – 14 of one cycle of chemotherapychemotherapy

• Reported on 5 symptoms + any other Reported on 5 symptoms + any other symptoms + temperaturesymptoms + temperature

MethodMethod

• Pre-study:Pre-study: Questionnaires from young people and Questionnaires from young people and

health professionalshealth professionals

• Post-study:Post-study: Questionnaires from young people & Questionnaires from young people &

parentsparents Symptom reportsSymptom reports Interviews with young people & health Interviews with young people & health

professionalsprofessionals Data from consultation sessions with Data from consultation sessions with

health professionalshealth professionals

What the young people said…What the young people said…Reassurance of being monitoredReassurance of being monitored

‘‘Feel safer that Feel safer that someone qualified is looking at someone qualified is looking at

your symptoms and would notice your symptoms and would notice something out of the ordinary’something out of the ordinary’

‘‘Mean if they (doctors and Mean if they (doctors and nurses) thought that symptom was nurses) thought that symptom was

unusual they could tell how (to) deal unusual they could tell how (to) deal with it otherwise may not do with it otherwise may not do

anything about it’anything about it’

‘‘I find it very useful, I find it very useful, particularly if it stops people particularly if it stops people

worrying at times and panicking worrying at times and panicking about what they have got’about what they have got’

‘‘I think the main benefit for I think the main benefit for me would be to put my mum’s me would be to put my mum’s

mind at rest more than anything’mind at rest more than anything’

What the young people said…What the young people said…Aid communication between young people Aid communication between young people & health professionals& health professionals

Before you start your treatment Before you start your treatment they ask how you’ve been and after they ask how you’ve been and after like the third time you get tired of like the third time you get tired of

saying it…they could just bring it up on the saying it…they could just bring it up on the computer and they know what you’ve been computer and they know what you’ve been

like and they could just check if they like and they could just check if they needed to check particular things, you needed to check particular things, you

wouldn’t have to keep wouldn’t have to keep going over and over itgoing over and over it

It can help them It can help them remember their symptoms because when remember their symptoms because when you come in for the first day of a cycle you come in for the first day of a cycle

doctors always ask you about the doctors always ask you about the symptoms over like the last cycle and symptoms over like the last cycle and

it’s sometimes kind of hard to remember it’s sometimes kind of hard to remember what you had on what you had on

each cycle each cycle

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

is happeningis happening

What the young people said…What the young people said…Reduce symptoms and increase Reduce symptoms and increase

controlcontrol

I felt in control and I liked that you could see if your temperature had improved

The nurses can tell you what to do to help reduce your symptoms

Hopefully you know you can nip symptoms in the bud

It will help me see the pattern of my symptoms, whether they’re

increasing or decreasing

Can see how symptoms change for other cycles

Health Professionals’ Health Professionals’ commentscomments

Increased control for young peopleIncreased control for young people Take back some control of their diseaseTake back some control of their disease Gave them some independence and Gave them some independence and

control back into managing their own lifecontrol back into managing their own life Allows control over their own symptoms Allows control over their own symptoms

and management of careand management of care

Increased support for young Increased support for young person/familyperson/family Support/reassurance from medical teamSupport/reassurance from medical team

Comments Comments cont.cont.

Early interventionEarly intervention Respond to symptoms more quicklyRespond to symptoms more quickly Early management of side effectsEarly management of side effects Prevent hospitalisationPrevent hospitalisation

Aid communication between young Aid communication between young person and health professionalsperson and health professionals

‘‘It will enable patients to give a clearer It will enable patients to give a clearer report of their symptoms to health report of their symptoms to health professionals’professionals’

Aid communication Aid communication cont. cont. ‘‘Would be great for patients to engage in Would be great for patients to engage in

appointments with, extra information on appointments with, extra information on how they have been’ how they have been’

‘‘You know they (young person) come in You know they (young person) come in and you say, “is anything the matter?” and you say, “is anything the matter?” and they go, “Oh, it’s been fine” and you and they go, “Oh, it’s been fine” and you find out two cycles later that actually find out two cycles later that actually they’ve had terrible diarrhoea for three they’ve had terrible diarrhoea for three cycles….they probably just thought it was cycles….they probably just thought it was something they should put up with’something they should put up with’

Would demonstrate that ‘what they Would demonstrate that ‘what they (young people) have to say and report is (young people) have to say and report is important’ important’

Comments Comments cont.cont.

Comments Comments cont.cont.

Improve knowledge and Improve knowledge and understanding:understanding: ‘‘Learn about what symptoms bother Learn about what symptoms bother

teenagers most’teenagers most’ ‘‘See trends in symptom progression’See trends in symptom progression’ ‘‘Improved knowledge of toxicities on Improved knowledge of toxicities on

patients’patients’ ‘‘It would give us better understanding of It would give us better understanding of

what is actually happening when they are what is actually happening when they are at home’at home’

Phase 3Phase 3

Phase 3Phase 3

1)1) Refined symptom questionnaire: Refined symptom questionnaire: • Nausea, vomiting, diarrhoea, mouth Nausea, vomiting, diarrhoea, mouth

sores, fatigue, constipation, pain (body sores, fatigue, constipation, pain (body map) map)

• Young people checked wording of Young people checked wording of revised questionnairerevised questionnaire

2)2) Development of alert system: Development of alert system: • Consultation session with health Consultation session with health

professionals professionals

• Proposed alerts sent out to nurses and Proposed alerts sent out to nurses and clinicians for review and then refinedclinicians for review and then refined

Cont…Cont…

3)3) Development of self-care advice: Development of self-care advice: • Consultation sessions held with health Consultation sessions held with health

professionals and young people professionals and young people

• Interviews with young people Interviews with young people

• Checked literature/patient information Checked literature/patient information

• Self-care advice written up and wording Self-care advice written up and wording checked by young peoplechecked by young people

4)4)Pilot/exploratory trial with alerting Pilot/exploratory trial with alerting and symptom advice messages put and symptom advice messages put into placeinto place

Changes for the RCT: based on Changes for the RCT: based on user involvement user involvement

• Changed the duration of completionChanged the duration of completion

• Additional question on the PDA: ‘have Additional question on the PDA: ‘have you had chemo today?’you had chemo today?’

• Redesign of the technology Redesign of the technology questionnairesquestionnaires

• Refined the outcome questionnaires Refined the outcome questionnaires to be given and when: quality of life, to be given and when: quality of life, self-efficacy, anxiety; cost self-efficacy, anxiety; cost effectiveness effectiveness

Phase 4Phase 4

Phase 4Phase 4• Randomised controlled trial involving 150 young Randomised controlled trial involving 150 young

people randomised to use the system throughout people randomised to use the system throughout their chemotherapy/ receive standard care.their chemotherapy/ receive standard care.

• Six or more sitesSix or more sites

• Outcome measures include: level of symptoms, Outcome measures include: level of symptoms, quality of life, anxiety, communication with health quality of life, anxiety, communication with health professionalsprofessionals

• Begin to embed system into daily practiceBegin to embed system into daily practice

• Expand system to use with different groups (e.g. Expand system to use with different groups (e.g. young people with leukaemia, central nervous young people with leukaemia, central nervous system tumour, children receiving palliative care)system tumour, children receiving palliative care)

SummarySummary

• MRC framework an important guide MRC framework an important guide

for complex interventionsfor complex interventions

• Involvement of professionalsInvolvement of professionals

• Involving usersInvolving users

Possible Possible

ImportantImportant

EnjoyableEnjoyable