Quality of Life in Childhood Quality of Life in Childhood Inflammatory Bowel Disease. Inflammatory Bowel Disease.

Adrian Thomas, Booth Hall Childrens Hospital

Manchester, UK

When I’m in remission I feel great and I think there is light When I’m in remission I feel great and I think there is light

at the end of the tunnel but when I’m not in remission I feel at the end of the tunnel but when I’m not in remission I feel

bad. I go very weak, lethargic & sick. I have bad tummy bad. I go very weak, lethargic & sick. I have bad tummy

pains & the runs. I feel that nobody cares how I feel, the pains & the runs. I feel that nobody cares how I feel, the

only people who understand me are my family, they only people who understand me are my family, they

support me through my bad days and encourage me to get support me through my bad days and encourage me to get

well. I wish I knew more people with this illness, I feel that well. I wish I knew more people with this illness, I feel that

I’m on my own.I’m on my own.

Age 10Age 10

HealthHealth

““a state of complete physical, mental and a state of complete physical, mental and social wellbeing and not merely the absence social wellbeing and not merely the absence of disease or infirmity”of disease or infirmity”

World Health OrganisationWorld Health Organisation

What is meant by quality of life?What is meant by quality of life?

Encompasses not only physical and mental health Encompasses not only physical and mental health but also the impact of the environmentbut also the impact of the environment

May be affected by personality, education, culture, May be affected by personality, education, culture, financial factors, community & family lifefinancial factors, community & family life

No universally accepted definition of QOL but No universally accepted definition of QOL but should take into account subjective as well as should take into account subjective as well as objective perception of circumstances of lifeobjective perception of circumstances of life

Health related quality of lifeHealth related quality of life

““the functional effect of an illness and its the functional effect of an illness and its treatment on a patient, as perceived by the treatment on a patient, as perceived by the patient”patient”

Schipper H et al 1990Schipper H et al 1990

Measures of health related quality of lifeMeasures of health related quality of life

Emphasise patients self-assessment which may differ Emphasise patients self-assessment which may differ substantially from that of healthcare professionalssubstantially from that of healthcare professionals

Give a broader picture of health than disease parameters Give a broader picture of health than disease parameters alone and should encompass:alone and should encompass: issues directly related to disease (eg. symptoms) issues directly related to disease (eg. symptoms) andand issues which are independent of disease but may be issues which are independent of disease but may be

affected by it (attitudes, emotional state, personality)affected by it (attitudes, emotional state, personality)

Should help to assess healthcare outcomes more fullyShould help to assess healthcare outcomes more fully

Measures of health related quality of lifeMeasures of health related quality of life

Generic Generic can compare QOL in children with IBD to normal children can compare QOL in children with IBD to normal children

and children with other conditions and children with other conditions may be too imprecise to reflect impaired function in IBD may be too imprecise to reflect impaired function in IBD

or to guage response to therapy or to guage response to therapy

Disease specificDisease specific more sensitive to specific problems of children with IBDmore sensitive to specific problems of children with IBD

DomainsDomains

Physical functionPhysical function

Emotional/psychologicalEmotional/psychological

Social (family, friends, school)Social (family, friends, school)

Cognitive function (school performance) Cognitive function (school performance)

Symptoms (pain, bowel function, energy)Symptoms (pain, bowel function, energy)

Treatment (response & side effects)Treatment (response & side effects)

Body imageBody image

Overall healthOverall health

Potential uses of HRQOL instrumentsPotential uses of HRQOL instruments

To assess individual patients or groupsTo assess individual patients or groups

To monitor treatment in clinical settingTo monitor treatment in clinical setting

To detect psychological disturbancesTo detect psychological disturbances

To measure outcome in clinical trialsTo measure outcome in clinical trials

To estimate/compare burden of the diseaseTo estimate/compare burden of the disease

To identify patients needsTo identify patients needs

To decide priorities in resource allocationTo decide priorities in resource allocation

HRQOL in childrenHRQOL in children

Physical, intellectual & emotional function Physical, intellectual & emotional function constantly changing with normal developmentconstantly changing with normal development

Changing perception of healthChanging perception of health Children more concerned about symptomsChildren more concerned about symptoms Parents more concerned about long term Parents more concerned about long term

consequences and side effects of treatmentconsequences and side effects of treatment

Impact of chronic disease in childrenImpact of chronic disease in children

10% of children have a chronic physical illness10% of children have a chronic physical illness

Behavioural problems, social isolation & Behavioural problems, social isolation & psychological disturbance common in adolescents psychological disturbance common in adolescents

May be special educational needsMay be special educational needs

Effects on parents & siblingsEffects on parents & siblings

Psychiatric aspects of childhood IBDPsychiatric aspects of childhood IBD

In meta-analysis of chronic diseases IBD had most profound In meta-analysis of chronic diseases IBD had most profound effect on mental healtheffect on mental health

Steinhausen - 56% IBD children cf. 18% of controls had Steinhausen - 56% IBD children cf. 18% of controls had psychiatric disorder (emotional)psychiatric disorder (emotional)

Engstrom - psychiatric disorder in 60% with IBD, 30% with Engstrom - psychiatric disorder in 60% with IBD, 30% with tension headaches, 20% with diabetes & 15% of healthy tension headaches, 20% with diabetes & 15% of healthy controlscontrols

Others - depressive disorders, lower self esteem, behavioural Others - depressive disorders, lower self esteem, behavioural problems, obsessive-compulsive disorders commonproblems, obsessive-compulsive disorders common

HRQOL in children with IBDHRQOL in children with IBD

Focus groupsFocus groups

Initial denial of effect of CD on QOLInitial denial of effect of CD on QOL

All felt angry, frustrated, fed up &/or worriedAll felt angry, frustrated, fed up &/or worried

Frustration and anger about: symptoms, lack of Frustration and anger about: symptoms, lack of understanding, investigations, hospitalisation, side understanding, investigations, hospitalisation, side effects of treatment & body imageeffects of treatment & body image

Quality of life in childhood Crohns diseaseQuality of life in childhood Crohns disease Rabbett H et al, J Pediatr Gastroenterol Nutr 1996;23:528-33Rabbett H et al, J Pediatr Gastroenterol Nutr 1996;23:528-33

QOL assessed by questionnaire in 16 children QOL assessed by questionnaire in 16 children

School absence problem in 12 & distraction in 6School absence problem in 12 & distraction in 6

Problems with sports in 8, 3 missed > 1 yearProblems with sports in 8, 3 missed > 1 year

Problems also with holidays & staying at friendsProblems also with holidays & staying at friends

Quality of life in childhood Crohns diseaseQuality of life in childhood Crohns disease Rabbett H et al, J Pediatr Gastroenterol Nutr 1996;23:528-33Rabbett H et al, J Pediatr Gastroenterol Nutr 1996;23:528-33

Children on steroids had more depressive symptoms with Children on steroids had more depressive symptoms with some even wishing they were deadsome even wishing they were dead

Children more concerned about symptomsChildren more concerned about symptoms

Parents more concerned about long term consequences and Parents more concerned about long term consequences and side effects of treatmentside effects of treatment

A review of measures of quality of life for A review of measures of quality of life for children with chronic illnesschildren with chronic illness

Eiser C, Morse R. Arch Dis Child 2001;84:205-11Eiser C, Morse R. Arch Dis Child 2001;84:205-11

Aim:Aim: to identify available measures of QoL in children to identify available measures of QoL in children 19 generic & 24 disease specific measures identified, almost half 19 generic & 24 disease specific measures identified, almost half

developed in USA & many had problems:developed in USA & many had problems: - limited availability of disease specific measures - - limited availability of disease specific measures -

discrepancy between child & parent ratings - lack discrepancy between child & parent ratings - lack of measures for self completion by children - lack of of measures for self completion by children - lack of precision regarding domains of QoL - cultural precision regarding domains of QoL - cultural appropriateness of measures developed elsewhere appropriateness of measures developed elsewhere for children in UK for children in UK

Development of a quality of life index for pediatric Development of a quality of life index for pediatric IBD: dealing with differences related to age & IBD typeIBD: dealing with differences related to age & IBD type

Griffiths AM et al. J Pediatr Gastroenterol Nutr 1999;28:S46-S52Griffiths AM et al. J Pediatr Gastroenterol Nutr 1999;28:S46-S52

Interviews held with 82 Canadian children aged 8-17 years with Interviews held with 82 Canadian children aged 8-17 years with IBD (61 CD, 21 UC)IBD (61 CD, 21 UC)

Important issues incorporated into 96 item reduction Important issues incorporated into 96 item reduction questionnairequestionnaire

117 different children with IBD scored each item for importance 117 different children with IBD scored each item for importance & frequency on visual analogue scale& frequency on visual analogue scale

Items ranked according to sum of scores, 33 item IMPACT Items ranked according to sum of scores, 33 item IMPACT questionnaire developed from 50 top ranking itemsquestionnaire developed from 50 top ranking items

Top ranking items on IMPACTTop ranking items on IMPACT

Worried about possibility of a flare-upWorried about possibility of a flare-upWorried/upset that IBD is lifelongWorried/upset that IBD is lifelongFeeling that its unfair to have IBDFeeling that its unfair to have IBDConcerned about weightConcerned about weightConcerned/upset about looksConcerned/upset about looksWorried about needing surgeryWorried about needing surgeryStomach painsStomach painsWorried about future health problemsWorried about future health problemsAngry about having IBDAngry about having IBD

A cross-cultural comparison of quality of life A cross-cultural comparison of quality of life in children with inflammatory bowel diseasein children with inflammatory bowel disease

Richardson G et al. J Pediatr Gastroenterol Nutr 2001;32:573-8Richardson G et al. J Pediatr Gastroenterol Nutr 2001;32:573-8

Aim: Aim: To determine whether IMPACT is suitable to measure To determine whether IMPACT is suitable to measure HRQOL in UK children with inflammatory bowel diseaseHRQOL in UK children with inflammatory bowel disease

Methods:Methods: The 96 item reduction questionnaire was scored by 53 The 96 item reduction questionnaire was scored by 53 children with IBD in the same way as in Canadachildren with IBD in the same way as in Canada

Results: Results: CloseClose correlation between ranks & only 2 items ranked correlation between ranks & only 2 items ranked highly in UK not included in IMPACT. 91/96 items scored highly in UK not included in IMPACT. 91/96 items scored more highly (worse QOL) in UK than Canada more highly (worse QOL) in UK than Canada

Simplification of IMPACTSimplification of IMPACT

Some questions/responses in IMPACT were felt to Some questions/responses in IMPACT were felt to be too complicated or upsetting, they’ve been be too complicated or upsetting, they’ve been simplified and made more child-friendly, new simplified and made more child-friendly, new version called IMPACT-IIversion called IMPACT-II

Original IMPACTOriginal IMPACT

Question 5: Your doctor and nurse have told you that Question 5: Your doctor and nurse have told you that medicines and other treatments are used to keep your medicines and other treatments are used to keep your bowel condition under control, but not actually cure it. bowel condition under control, but not actually cure it. Put a mark on the line to show how you feel about thisPut a mark on the line to show how you feel about this

__________________________ __________________________

AA BIBD is going to be with me all I know that my bowel condition

my life; its horrible having can’t be cured now but I never

something thats lifelong. I can’t worry about that. I’m hopeful

stop thinking about that research will find a cure one day

IMPACT-IIIMPACT-II

Question 5: How much does it bother you that you have Question 5: How much does it bother you that you have

an illness that does not just go awayan illness that does not just go away??

Not at all __________________________ Very muchNot at all __________________________ Very much

Simplification of IMPACTSimplification of IMPACT

21 UK children (10-17 yrs) with IBD completed 21 UK children (10-17 yrs) with IBD completed (random order) both versions of IMPACT(random order) both versions of IMPACT

16 preferred IMPACT-II, 2 preferred IMPACT & 16 preferred IMPACT-II, 2 preferred IMPACT & 3 had no preference, commonest reason was: 3 had no preference, commonest reason was: “easier to understand”“easier to understand”

Mean time to complete: IMPACT 13.6 min, Mean time to complete: IMPACT 13.6 min, IMPACT-II 9.7 min, p<0.05. Mean QoL scores: IMPACT-II 9.7 min, p<0.05. Mean QoL scores: IMPACT 137, IMPACT-II 132 p=ns.IMPACT 137, IMPACT-II 132 p=ns.

Likert or Visual Analogue Scale?Likert or Visual Analogue Scale?

The Visual Analogue Scale (VAS)The Visual Analogue Scale (VAS)

Here is an example question from the adapted Here is an example question from the adapted questionnaire using the VAS.questionnaire using the VAS.

Question 12: Question 12: How often do you think it is unfair that you How often do you think it is unfair that you

have inflammatory bowel disease?have inflammatory bowel disease?

Never__________________________ Very oftenNever__________________________ Very often

The Likert ScaleThe Likert Scale

Here is the same question again with the answers Here is the same question again with the answers given with the different format.given with the different format.

Question 12: Question 12: How often do you think it is unfair you have How often do you think it is unfair you have inflammatory bowel disease?inflammatory bowel disease?

Never Rarely Sometimes Often Very oftenNever Rarely Sometimes Often Very often

Likert or Visual Analogue Scale?Likert or Visual Analogue Scale?

1) To determine which response scale was preferred 1) To determine which response scale was preferred by children with IBDby children with IBD

2) To check that the two response scales collected 2) To check that the two response scales collected similar results similar results

MethodsMethods 20 children with IBD between the ages of 8-16 were asked 20 children with IBD between the ages of 8-16 were asked

to fill in two versions of IMPACTto fill in two versions of IMPACT

The VAS and Likert questionnaires were distributed in The VAS and Likert questionnaires were distributed in random orderrandom order

The children were asked to comment on their preferred The children were asked to comment on their preferred response scales and asked to give reasons for their decisionresponse scales and asked to give reasons for their decision

Four children took part in cognitive interviews requiring Four children took part in cognitive interviews requiring them to ‘think out aloud’ when completing one of the them to ‘think out aloud’ when completing one of the questionnairesquestionnaires

Results of the study. Results of the study.

0

10

20

30

40

50

60

70

80

Total

Response Scale Preferred.

Likert

VAS

75% preferred the Likert scale 75% preferred the Likert scale (p<0.01)(p<0.01)

Main reason given was that it Main reason given was that it was easier to understandwas easier to understand

Children didn’t know where Children didn’t know where to place their ‘X’ on the VAS to place their ‘X’ on the VAS and felt it didn’t reflect their and felt it didn’t reflect their answer answer

VAS supporters though it was VAS supporters though it was more accuratemore accurate

Graph showing preference of response scale

Results cont...Results cont...

010

2030

4050

6070

8090

8-12 yrolds

13-16 yrolds

Likert

VAS

This suggests that 8-12 year This suggests that 8-12 year olds prefer the Likert scale to a olds prefer the Likert scale to a greater degree than the older greater degree than the older age groupage group

87.5% (7 out of 8) of 8-12 year 87.5% (7 out of 8) of 8-12 year olds prefer Likertolds prefer Likert

66.6% (8 out of 12) of 13-16 66.6% (8 out of 12) of 13-16 year olds prefer Likertyear olds prefer Likert

Graph Showing Mean Scores from Graph Showing Mean Scores from the two Questionnaires the two Questionnaires

0

5

10

15

20

25

30

35

Total 8-12 years 13-16 years

Likert

VAS

Second aim was to check Second aim was to check scores between different scores between different response scales were response scales were comparablecomparable

After translating scores (scale After translating scores (scale ranged 0-100, 0 being best ranged 0-100, 0 being best and 100 being the worst and 100 being the worst possible quality of life) there possible quality of life) there was no significant differencewas no significant difference

Likert = Mean score 27.1Likert = Mean score 27.1 VAS = Mean score 26.3VAS = Mean score 26.3

ConclusionsConclusions Childhood Crohn’s disease and its treatment have a great Childhood Crohn’s disease and its treatment have a great

impact on QOL impact on QOL Future studies of treatment should include consideration of Future studies of treatment should include consideration of

effects on QOLeffects on QOL The simplified questionnaire (IMPACT-II) was preferred The simplified questionnaire (IMPACT-II) was preferred

by children with IBD and gave similar resultsby children with IBD and gave similar results The Likert scale (IMPACT-III) was preferred to the VAS The Likert scale (IMPACT-III) was preferred to the VAS

and also appeared to give similar resultsand also appeared to give similar results Further validation is requiredFurther validation is required