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Supportive care in head and neck cancer patients Jansen, F.

2018

document version

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citation for published version (APA)

Jansen, F. (2018). Supportive care in head and neck cancer patients: Patient-reported needs and costs.

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Femke Jansen Anna MH Krebber Veerle MH Coupé Pim Cuijpers Remco de Bree Annemarie Becker-Commissaris Egbert F Smit

Annemieke van Straten Guus M Eeckhout Aartjan TF Beekman C René Leemans

Irma M Verdonck-de Leeuw

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INTRODUCTION

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acute coronary syndromeϭϰ_{ ǁŝƚŚ ƉƐLJĐŚŽůŽŐŝĐĂů ĚŝƐƚƌĞƐƐ͕ ŚĂǀĞ ĨŽƵŶĚ ƚŚĂƚ͕ ĞdžĐĞƉƚ ĨŽƌ}

one studyϭϬ_{͕ƚŚĞƐƚĞƉƉĞĚĐĂƌĞƉƌŽŐƌĂŵŝŵƉƌŽǀĞĚƋƵĂůŝƚLJͲĂĚũƵƐƚĞĚůŝĨĞLJĞĂƌƐ;Y>zƐͿŽƌ}

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7

Eligible patients with increased HADS (n=265)

Baseline assessment t0 Randomized (n=156)

Allocated to intervention (n=75)

Step 1, Watchful waiting (n=75) Step 2, Guided self-help (n=50)

Step 3, Problem solving treatment (n=11) and 3 patients directly to step 4

Step 4, Psychotherapy or medication (n=6)

Allocated to control group (n=81)

Did not receive psychosocial care (n=52) Did receive psychosocial care (n=20) Missing (n=9)

t1 assessment (after stepped care)

- Completed EQ-5D (n=61) - Not completed EQ-5D (n=14)

t2 assessment (3 months after t1)

- Completed EQ-5D (n=58) - Not completed EQ-5D (n=16)

t3 assessment (6 months after t1)

- Completed EQ-5D (n=55) - Not completed EQ-5D (n=18)

t4 assessment (9 months after t1)

- Completed EQ-5D (n=54) - Not completed EQ-5D (n=18)

t5 assessment (12 months after t1)

- Completed EQ-5D (n=55) - Not completed EQ-5D (n=16)

t1 assessment (4 months after t0)

- Completed EQ-5D (n=72) - Not completed EQ-5D (n=8)

t2 assessment (3 months after t1)

- Completed EQ-5D (n=60) - Not completed EQ-5D (n=16)

t3 assessment (6 months after t1)

- Completed EQ-5D (n=59) - Not completed EQ-5D (n=12)

t4 assessment (9 months after t1)

- Completed EQ-5D (n=53) - Not completed EQ-5D (n=16)

t5 assessment (12 months after t1)

- Completed EQ-5D (n=52) - Not completed EQ-5D (n=14)

Excluded (n=109)

- Declined to participate (n=102) - Could not be reached (n=7)

Died (n=1) Died (n=4) Died (n=5) Died (n=2) Died (n=3) Died (n=1) Died (n=1) Died (n=1) Died (n=1) Screening for psychological distress by HADS using OncoQuesta

1-11-2009 untill 1-8-2013 2885 times in 920 patients

Screening for psychological distress by

HADS using telephone

1-12-2012 untill 1-8-2013 in 378 patients

a

At the Department of Otolaryngology - Head and Neck surgery and at the Department of Pulmonary Diseases of the VU University Medical Center in Amsterdam, the Netherlands.

Analysed (n=75) Analysed (n=81)

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ƉĞƌƵŶŝƚ;ΦͿ ĂƐĞůŝŶĞ;ƚϬͿ ƚϭ ƚϮ ƚϯ ƚϰ

Direct medical costsϮ _{ϭϴϵ;ϯϬϯͿ ϮϬϯ;ϮϯϬͿ ϭϳϲ;ϮϮϮͿ ϭϴϲ;ϮϰϬͿ ϭϰϴ;ϭϲϵͿ}

'ĞŶĞƌĂůƉƌĂĐƟƟŽŶĞƌ Ϯϵ Ϯϲ;ϰϵͿ ϮϬ;ϮϳͿ Ϯϯ;ϯϳͿ ϭϳ;ϯϭͿ ϮϮ;ϯϱͿ Company doctor ϲϱ ϭϭ;ϯϰͿ ϭϭ;ϮϱͿ ϭϮ;ϮϵͿ ϳ;ϮϰͿ ϯ;ϭϯͿ ^ŽĐŝĂůǁŽƌŬĞƌ;ĐŽŵƉĂŶLJͿ ϲϴ ϭ;ϭϬͿ ϭ;ϭϬͿ Ͳ Ͳ Ͳ ^ŽĐŝĂůǁŽƌŬĞƌ;ŐĞŶĞƌĂůͿ ϲϴ ϭϬ;ϯϮͿ ϰ;ϭϳͿ ϯ;ϮϬͿ ϳ;ϯϱͿ ϲ;ϮϴͿ Physiotherapist ϯϴ ϲϱ;ϭϵϯͿ ϱϴ;ϭϬϬͿ ϰϲ;ϵϵͿ ϱϮ;ϭϭϳͿ ϯϭ;ϳϮͿ ŝĞƟƟĂŶ Ϯϴ ϭϮ;ϮϰͿ ϳ;ϭϵͿ ϴ;ϮϮͿ ϴ;ϮϬͿ ϰ;ϭϮͿ WƐLJĐŚŽůŽŐŝĐĂůŚĞůƉ ;ƉƌŝǀĂƚĞƉƌĂĐƟĐĞͿ ϴϭ Ͳ ϭϮ;ϯϴͿ ϯ;ϭϳͿ ϯ;ϭϳͿ Ϯ;ϭϮͿ WƐLJĐŚŽůŽŐŝĐĂůŚĞůƉ;ŽƵƚͲƉĂƟĞŶƚͿ ϭϳϵ ϭϵ;ϭϬϳͿ ϭϵ;ϳϳͿ ϭϱ;ϲϯͿ ϯϬ;ϭϮϬͿ ϭϱ;ϲϯͿ WƐLJĐŚŽůŽŐŝĐĂůŚĞůƉ;ĂĚĚŝĐƟŽŶͿ ϭϳϵ Ͳ ϭϱ;ϭϬϰͿ ϭϵ;ϭϬϳͿ Ͳ Ͳ WƐLJĐŚŽůŽŐŝĐĂůŚĞůƉ ;ŵĞŶƚĂůŚŽƐƉŝƚĂůͿ ϭϴϭ Ͳ ϭϱ;ϲϯͿ ϰ;ϮϲͿ ϰ;ϮϲͿ ϰ;ϮϲͿ ^ƉĞĐŝĂůŝƐƚ;ŐĞŶĞƌĂůŚŽƐƉŝƚĂůͿ ϲϳ Ϯϲ;ϭϬϬͿ Ϯϰ;ϰϵͿ ϭϲ;ϰϮͿ ϭϵ;ϯϵͿ ϮϬ;ϯϵͿ Priest ϭϮϮ Ͳ Ͳ ϯ;ϭϴͿ ϯ;ϭϴͿ ϯ;ϭϴͿ ,ŽƵƐĞĐůĞĂŶŝŶŐ Ϯϱ ϭϭ;ϱϵͿ ϭϰ;ϲϮͿ ϭϵ;ϳϵͿ ϯϮ;ϭϬϮͿ ϯϴ;ϭϭϮͿ Personal care ϰϲ Ͳ Ͳ Ͳ Ͳ Ͳ sŝƐŝƟŶŐŶƵƌƐĞ ϲϴ ϳ;ϰϭͿ ϭ;ϭϬͿ ϰ;ϭϳͿ ϯ;ϮϬͿ ϭ;ϭϬͿ KƚŚĞƌĚŝƌĞĐƚŵĞĚŝĐĂůĐŽƐƚƐ DĞĚŝĐĂƟŽŶϮ _{Ϭ͘ϭϵʹϳ͘ϱϴƉĞƌ ϭϵ;ϯϯͿ ϭϳ;ϯϬͿ ϭϳ;ϮϴͿ ϭϳ;ϮϵͿ ϭϮ;ϮϭͿ} Specialistϯ _ϭϯϬ Day treatmentϯ _ϮϱϮ ,ŽƐƉŝƚĂůŝnjĂƟŽŶϯ _ϱϳϲŽƌ Ϯϭϴϰ;/Ϳ ŝƌĞĐƚŶŽŶͲŵĞĚŝĐĂůĐŽƐƚƐϮ _{ϴϬ;ϭϳϳͿ ϯϰ;ϴϯͿ ϳϵ;ϮϯϬͿ ϲϬ;ϭϱϴͿ ϰϵ;ϭϰϲͿ} ^ƵƉƉŽƌƚŐƌŽƵƉƐ ϭϮ͘ϴϬʹϱϳ͘ϱϬ ϯϰ;ϭϯϴͿ ϰ;ϭϰͿ ϭϴ;ϱϰͿ ϯϳ;ϭϱϬͿ ϭϲ;ϱϱͿ Informal care ϭϮ͘ϴϬ ϰϭ;ϭϮϯͿ Ϯϰ;ϴϬͿ ϱϳ;ϮϮϯͿ ϭϵ;ϱϵͿ ϯϬ;ϭϯϳͿ dƌĂŶƐƉŽƌƚĂŶĚƉĂƌŬŝŶŐĐŽƐƚƐ Ϭ͘ϮϬƉĞƌŬŵͬϯ͘ϬϬ ƉĂƌŬŝŶŐ ϰ;ϴͿ ϲ;ϳͿ ϰ;ϲͿ ϰ;ϲͿ ϯ;ϰͿ /ŶĚŝƌĞĐƚŶŽŶͲŵĞĚŝĐĂůĐŽƐƚƐϰ _{ϯϳϮ;ϭϭϮϳͿ Ϯϲϰ;ϵϭϰͿ ϮϬϱ;ϱϴϮͿ ϭϳϮ;ϳϰϳͿ ϭϮϰ;ϰϮϮͿ}

ϭϱϬ ďLJŵƵůƟƉůLJŝŶŐƚŚĞŵĞĂŶĐŽƐƚƐĂƚƟŵĞƉŽŝŶƚƚϭďLJƚŚĞĐŽƌƌĞƐƉŽŶĚŝŶŐƟŵĞƉĞƌŝŽĚ;ƟŵĞ ďĞƚǁĞĞŶƚϬĂŶĚƚϭͿ͘hŶůŝŬĞƉĂƟĞŶƚƐŝŶƚŚĞĐŽŶƚƌŽůŐƌŽƵƉ͕ĨŽƌƉĂƟĞŶƚƐƌĂŶĚŽŵŝnjĞĚƚŽƚŚĞ ŝŶƚĞƌǀĞŶƟŽŶŐƌŽƵƉ͕ƚŚĞĐŽƐƚƐĂƐŵĞĂƐƵƌĞĚƵƐŝŶŐƚŚĞd/ͲWĂŶĚWZK/^YĂƚƚϭǁĞƌĞŶŽƚ ĞdžƉĞĐƚĞĚƚŽďĞŐĞŶĞƌĂůŝnjĂďůĞƚŽƚŚĞĞŶƟƌĞŝŶƚĞƌǀĞŶƟŽŶƉĞƌŝŽĚ;ĂƉĂƟĞŶƚǁĂƐĞdžƉĞĐƚĞĚ ƚŽŚĂǀĞĚŝīĞƌĞŶƚĐŽƐƚƐĚƵƌŝŶŐƐƚĞƉϰƚŚĂŶĚƵƌŝŶŐƐƚĞƉϭͿ͘dŚĞƌĞĨŽƌĞ͕ĐƵŵƵůĂƟǀĞĐŽƐƚƐ ďĞƚǁĞĞŶƚϬĂŶĚƚϭĨŽƌŝŶƚĞƌǀĞŶƟŽŶƉĂƟĞŶƚƐǁĞƌĞĐĂůĐƵůĂƚĞĚďLJƐƵŵŵŝŶŐĐŽƐƚƐƉĞƌƐƚĞƉ͘ DĞĂŶĐŽƐƚƐƉĞƌƐƚĞƉƉĞƌϰǁĞĞŬƐǁĞƌĞĐĂůĐƵůĂƚĞĚĨŽƌĂůůƉĂƟĞŶƚƐǁŚŽϭͿƉĂƌƟĐŝƉĂƚĞĚŝŶ ƐƚĞƉϰ͕ϮͿƉĂƌƟĐŝƉĂƚĞĚŝŶƐƚĞƉϯďƵƚŶŽƚŝŶƐƚĞƉϰ͕ϯͿƉĂƌƟĐŝƉĂƚĞĚŝŶƐƚĞƉϮďƵƚŶŽƚŝŶƐƚĞƉ ϯŽƌϰ͕ĂŶĚϰͿƉĂƟĞŶƚƐǁŚŽƉĂƌƟĐŝƉĂƚĞĚŝŶƐƚĞƉϭďƵƚŶŽƚŝŶƐƚĞƉϮ͕ϯŽƌϰ͘^ƵďƐĞƋƵĞŶƚůLJ͕ ĐƵŵƵůĂƟǀĞĐŽƐƚƐƉĞƌƉĂƟĞŶƚǁĞƌĞĐĂůĐƵůĂƚĞĚďLJŵƵůƟƉůLJŝŶŐŵĞĂŶĐƵŵƵůĂƟǀĞĐŽƐƚƐƉĞƌ ƐƚĞƉƉĞƌϰǁĞĞŬƐďLJƚŚĞƟŵĞĂƉĂƟĞŶƚƉĂƌƟĐŝƉĂƚĞĚŝŶƚŚĞƉĂƌƟĐƵůĂƌƐƚĞƉ͘ŽƐƚƐďĞƚǁĞĞŶ ƚϭĂŶĚƚϱĂƐŵĞĂƐƵƌĞĚƵƐŝŶŐƚŚĞd/ͲWĂŶĚWZK/^YĨŽƌďŽƚŚŐƌŽƵƉƐǁĞƌĞĐĂůĐƵůĂƚĞĚ ƵƐŝŶŐůŝŶĞĂƌŝŶƚĞƌƉŽůĂƟŽŶ͘dŽƚĂůĐƵŵƵůĂƟǀĞĐŽƐƚƐƉĞƌƉĂƟĞŶƚǁĞƌĞĐĂůĐƵůĂƚĞĚďLJƐƵŵŵŝŶŐ ĐƵŵƵůĂƟǀĞĐŽƐƚƐŵĞĂƐƵƌĞĚƵƐŝŶŐƚŚĞd/ͲWĂŶĚWZK/^YǁŝƚŚŝŶƚĞƌǀĞŶƟŽŶĐŽƐƚƐĂŶĚ ĐŽƐƚƐŵĞĂƐƵƌĞĚƵƐŝŶŐƚŚĞŚŽƐƉŝƚĂůŝŶĨŽƌŵĂƟŽŶƐLJƐƚĞŵ͘dŚĞŶƵŵďĞƌŽĨY>zƐƉĞƌƉĂƟĞŶƚ ǁĂƐĐĂůĐƵůĂƚĞĚďLJŵƵůƟƉůLJŝŶŐƚŚĞYͲϱƵƟůŝƚLJƐĐŽƌĞďLJƚŚĞĂƉƉƌŽƉƌŝĂƚĞƟŵĞƉĞƌŝŽĚŝƚ ĂĐĐŽƵŶƚƐĨŽƌƵƐŝŶŐůŝŶĞĂƌŝŶƚĞƌƉŽůĂƟŽŶ͘ ŶŝŶĐƌĞŵĞŶƚĂůĐŽƐƚͲƵƟůŝƚLJƌĂƟŽ;/hZͿǁĂƐĐĂůĐƵůĂƚĞĚƚŽŽďƚĂŝŶƚŚĞĐŽƐƚƐƉĞƌŐĂŝŶĞĚ Y>zďLJĚŝǀŝĚŝŶŐƚŚĞŝŶĐƌĞŵĞŶƚĂůĐŽƐƚƐďLJƚŚĞŝŶĐƌĞŵĞŶƚĂůĞīĞĐƚƐƵƐŝŶŐƚŚĞĨŽůůŽǁŝŶŐ ĨŽƌŵƵůĂ;ŵĞĂŶŽƐƚƐ_{ŝŶƚĞƌǀĞŶƟŽŶ}ʹŵĞĂŶŽƐƚƐ_controlͿͬ;ŵĞĂŶY>zƐ_{ŝŶƚĞƌǀĞŶƟŽŶ}ʹŵĞĂŶY>zƐ

ϭϱϲ ƌĞƐƵůƚĞĚŝŶůŽǁĞƌŵĞĂŶY>zƐĂŶĚŝƐĞdžƉĞĐƚĞĚƚŽŝŶŇƵĞŶĐĞŵĞĂŶƚŽƚĂůĐŽƐƚƐ͘dŚĞƌĞĨŽƌĞ͕ ƚǁŽĂĚĚŝƟŽŶĂůĂŶĂůLJƐĞƐǁĞƌĞƉĞƌĨŽƌŵĞĚ͗ŽŶĞĂŶĂůLJƐŝƐŝŶǁŚŝĐŚĂůůĚŝĞĚƉĂƟĞŶƚƐǁĞƌĞ ĞdžĐůƵĚĞĚĂŶĚŽŶĞĂŶĂůLJƐŝƐŝŶǁŚŝĐŚĨŽƌĂůůĚŝĞĚƉĂƟĞŶƚƐĐŽƐƚĂŶĚƵƟůŝƚLJĚĂƚĂǁĞƌĞŝŵƉƵƚĞĚ ĂƐƚŚŽƵŐŚƚŚĞLJǁĞƌĞƐƟůůĂůŝǀĞ͘/ŶďŽƚŚĂŶĂůLJƐĞƐŝŶĐƌĞŵĞŶƚĂůĐŽƐƚƐďĞƚǁĞĞŶƚŚĞƚǁŽ ŐƌŽƵƉƐĐŚĂŶŐĞĚƐŽŵĞǁŚĂƚ͕ǁŚŝůĞƚŚĞŝŶĐƌĞŵĞŶƚĂůY>zƐĚĞĐƌĞĂƐĞĚƚŽĂŶŽŶͲƐƚĂƟƐƟĐĂůůLJ ƐŝŐŶŝĮĐĂŶƚĚŝīĞƌĞŶĐĞ͘,ŽǁĞǀĞƌ͕ƚŚĞŝŶƚĞƌǀĞŶƟŽŶŐƌŽƵƉƐƟůůŚĂĚĂƉƌŽďĂďŝůŝƚLJŽĨϴϰйͲϵϬй ƚŚĂƚĐƵŵƵůĂƟǀĞY>zƐǁĞƌĞŚŝŐŚĞƌƚŚĂŶŝŶƚŚĞĐŽŶƚƌŽůŐƌŽƵƉĂŶĚĂƉƌŽďĂďŝůŝƚLJŽĨϵϲй ͲϵϵйƚŚĂƚŝƚǁĂƐůĞƐƐĐŽƐƚůLJ͘dŚŝƐŝŶĚŝĐĂƚĞƐƚŚĂƚǁŚĞŶƐƚĞƉƉĞĚĐĂƌĞĚŽĞƐŶŽƚŝŶŇƵĞŶĐĞ ƐƵƌǀŝǀĂů͕ŝƚŝƐƐƟůůůŝŬĞůLJƚŽďĞĐŽƐƚͲĞīĞĐƟǀĞ͘ KƵƌĮŶĚŝŶŐƐĂƌĞŝŶĂŐƌĞĞŵĞŶƚǁŝƚŚŽŶĞƉƌĞǀŝŽƵƐƐƚƵĚLJƚŚĂƚƚĂƌŐĞƚĞĚĐĂŶĐĞƌƉĂƟĞŶƚƐ with increased levels of distressϮϲ_{͘ůůŽƚŚĞƌƉƌĞǀŝŽƵƐƐƚƵĚŝĞƐƚĂƌŐĞƟŶŐĐĂŶĐĞƌƉĂƟĞŶƚƐ}