Kualitas Hidup: Salah Satu Indikator

Keberhasilan Penatalaksanaan Kanker

Maria A. Witjaksono
Yogyakarta, 7 September 2012
“You matter because you are you. You matter
to last moment of your life, and we will do all
we can, not only to help you die peacefully but
to live until you die”
Dame Cicely Saunders
Latar Belakang:
 Penemuan terapi antineoplastik belum merubah faktor2
prognostik
 Di Indonesia sebagian besar ditemukan pada stadium lanjut
 Survival Rate and Disease Free Survival rendah
 Kualitas Hidup menjadi indikator keberhasilan penatalaksanaan
kanker untuk mengurangi penderitaaan
 WHO: Perawatan Paliatif mencegah dan mengurangi
penderitaan
 Kualitas hidup: multidimensional, dinamik, subjektif dan unik
Figure
Figure1.41.2:
Figure TenRelative
1.2:Figure
Relative
1.2: survival
year relative
survival
Ten (%),
survival
(%), adults
for adults(15-99
adults
yeardiagnosed
relative (15-99
survival years),
diagnosed withselected
years),
(%), selected
adults (15-99cancers,
cancer during
cancers, Englandandcancers,
1971-1991
years), selected and Wales:
England and Wales: survival trends for selected cancers 1971-2007
predicted
survival survival
Englandtrends for patients
for selected
and Wales: survivalcancers in 2007
trends 1971-2007 (Goals update, 2010)
for selected cancers 1971-2007

100

90

80
esurvival

70
Pe e
rc ntag

60

50

40

30

20

10

0
1971-72
1980-81
1990-91
2007
(1)(1)(1)
(2)

Period of diagnosis
Permasalahan Penatalaksanaan Kanker di
Indonesia:

 >70% ditemukan pada stadium lanjut

 Terapi standard hanya di kota besar
 Terapi standard tidak terjangkau

AKIBATNYA?

DiPERLUKAN PERAWATAN PALIATIF

Who is there in all the world who listen us? Here I am this is me in
my nakedness, with my wounds, my secret grief, my despair, my
betrayal, my pain which I can’t express, my terror, my
abandonment. Oh listen to me for a day, an hour, a moment, lest I
expire in my terrible wilderness, my lonely silence. Oh God, is
there no one to listen?
Seneca
Complex problems
 Physical symptoms:
Social difficulties
tumor infiltration, treatment, debilitating,
other condition Problems with interpersonal relationship due to
 Psychological distress: patient’s or other person’s reaction to the illness
Uncontrolled physical symptoms Marital problems
Rapidly progressive Disagreement about cancer treatment
Anticipated disabilities Role shifts
Financial needs
Disfigurement
Language
Physical dependence Family structure
Physical exhaustion Disclosure
Side effects of therapy Attitude to cancer, pain, death
Multiple failed treatment
Bureaucracy Spiritual concerns
Expense
Relating to the past
Poor communication
Relating to the present
Unhelpful Relating to the future
Disinterested concern about death
Lack of information Relating to religion
Lack of continuity of care disease is punishment
Exclusion of family existence of after-life
Culturally insensitive
Spiritual concerns not discussed
Pengalaman individu bersifat unik

Kehilangan:
 Pribadi yang utuh &
integritas
 Kepastian
 Kontrol
 Kebebasan
 Otonomi & peran
 Harapan
 Masa depan, mimpi
 Body image
 Percaya diri
 Martabat
 Jaminan
 Finansial
Hidup berkualitas walaupun dengan kanker
Inter disciplinary team

Oncologist
Social worker PC Doctor

Therapist Nurse
PATIENT
Specialist Family psychologist

Pastoral Care GP

Family, friends, carers,volunteer

Quality of Life:
Sociological context:
Qol measures human welfare
 level of education
 economi,
 industrial growth
HRQoL:
 Important concept
 Multidimentional,
 Dynamic,
 Patientcentered,
 Subjective and unique to
each individual
DEFINISI?
SESUAI PANDNAGAN PASIEN
Quality of life in medicine:
 The state of well being that is composite of two components; the
ability to perform everyday activities that refelct physical,
psychological and social well being and patient satisfaction with
level of functionung and control of the desease
 QoL is influenced by a person experience, belief, expectation
and perception
 Patient perception of thier postion in life in the context of cultural
and value system and in relation to their goals, expectation,
standard, concern
 Represent the functional effect of an illness and its consequent
therapy as pereived by the patient
 Mental capacity: think clearly, to see, to love n to be loved,
make decision for one self, to maintain contact and relate with
family and friends, to live at home
 Capacity of the individual to realize his life, perception of
personal meaning
GAP THEORY of CALMANN
QoL is an inverse relationship to the difference between
an individual’s expectations and their perception of
the given situation

The smaller the gap the better the QoL.

expectation

experience
HRQoL in Oncology

 DASAR PERSETUJUAN OBAT BARU (FDA)

 PENTING DALAM MENENTUKAN PENGOBATAN
DAN PERAWATAN
 SULIT DITERAPKAN: QoL VS SR/DFS
 BERHUBUNGAN DENGAN PENYAKIT DAN
PENGOBATAN
MENGUKUR QoL

 SULIT KARENA SUBJEKTIF, DINAMIK,

 Who? Which tool? How to use the tool? How to interprate?
 MELIBATKAN BANAYK DISIPLIN
 HASIL PENGUKURAN DR TIDAK SAMA DENGAN PASIEN

 Inconsistency between a single global score ans deteiled

knowledge of various symptoms
FACT-AN (Functional Assessment of Cancer Therapy-Anemia)
vs KPS
Interprating the score

 The degree of change perceived to be statistically

 Significant could well differ from population to
population and from patient to patient

SURVIVAL VS QoL
Tools frequently used in oncology

 Short Form 36 (SF-36)

 European Organisation for the Research and
Treatmentn of Cancer (EORTC QLQ-C30)
 Functional Assessment of Cancer Therapy-General
(FACT-G)
 Visual Analogue Scale-Cancer (VAS-C)
 Hospital and Anxiety Depression Scale (HADS)
 Profile of Mood States (POMS)
 Rotterdam Symptom Checklist (RSCL)
Quality of Life (J.J Clinc dkk, 1998)

1. Physical concern
2. Functional ability
3. Family well-being
4. Emotional well-being
5. Spiritual life
6. Social Functioning
7. Treatment satisfaction
8. Future Orientation
9. Sexuality/intimacy/body image
10. Occupational functioning
EORT QLQ-C30

SAAT INI:
1. Kesulitan melakukan aktifitas mengangkat barang berat
2. Kesulitan bila berjalan jauh
3. Kesulitan bila berjalan dekat di luar rumah
4. Perlu beada di atas tempat tidur atau di kursi bila siang hari?
5. Pertolongan saat makan, berpakaian , mandi, menggunakan
toilet

1= tidak sama sekali , 2=sedkit 3=cukup 4=berat

SEMINGGU YLL 16 Apakah anda kesulitan bab
17 Apakah anda mencret
6. Merasakan keterbatasan 18 Merasa lelah
melakukan 19 Apakah nyeri menggangu
kegiatan/pekerjaan sehari aktifitas anda
hari
20 Merasa sulit berkonsentrasi
7. Keterbatasan melakukan
21 Apakah merasa tegang?
hobi atau kegiatan waktu
senggang 22 Apakah merasa khawatir?
8. Merasa Sulit bernapas 23 Apakah merasa mudah
marah?
9. Merasa nyeri/kesakitan
24 Tekanan batin
10. Memerlukan istirahat
25 mengingat sesuatu
11. Merasa sulit tidur
26 Kondisi/pengobatan
12. Merasa lesu
mengganggu kehidupan
13. Merasa kurang nafsu maka kelg
14. Merasa mual 27 Kondisi badan/pengobatan
15. Apakah anda muntah menyebabkan kesulitan keu
1 2 3 4 5 6 7
Buruk sekali baik sekali

29. Bagaimana anda menilai kesehatan anda secara

keselutuhan seminggu yll

30. Bagaimana anda menilai kualitas hidup secara

keseluruhan anda seminggu yll
 Fell good
 Look good
 Eat good
 Rest good
QoL: Performance Status

ECOG(Eastern Cooperative Oncology

Group)
1. Fully active, able to carry on all pre-disease performance without
restriction
2. Restricted in physically strenous activity, but ambulatory and
able to carry out work of light sedentary nature (light house
work, office work)
3. Capable of only limited self-care, confined to bed or chair more
than 50% of waking hour
4. Completely disabled, cannnot carry on any self-care, totally
confined to bed/chair
Karnofsky Rating Scale: S, O improvement n PS
 100: Normal with no complaint or evidence of disease
 90: A ble to carry on normal activity, but with monor signs of illness
present
 80: Normal activity but require effort . Sign and symptoms of disease
more prominent
 70: able to care for self, but unable to work pr carry on other normal
activities
 60: able to carry for most needs, but require occasional asisstance
 50: Cosiderable assisstance and frequent medical care required, some
selfcare possible
 40: disabled, requiring special care and assisstance
 30: Severely disabled; hospitalization but death is not prominent
 20: Extremely ill, supportive traement and hospitalization required
 10; imminent death
 0: death
TUJUAN PENILAIAN QoL

 Identify multidimendimentional aspects along the disease

 Describe the patient’s problems and needs for clinical
monitoring
 Audit care provided
 Assess efficacy of service
 Identify the potential area for improvement
 Elicit preference to assisst with decision making
 Facilitate a good communication and rapport
QoL in advanced stage of disease

 It is difficult to percisely define and to measure

 Patient may adjust the standard of QoL
 What is important and how they weight the components of life
may change
 Other than physical status is possible to become a source to
reach QoL
 Patient with physical limitation may report high degree of QoL
 Essential domains: purpose and meaning of life, personal
growth and transcendence
Modification of Mc Gill QoL: 1 - 10
 Gejala fisik 1, 2, 3
 Secara fisik saya merasa: sangat buruk .......sangat baik
 Saya tertekan: selalu..................tidak pernah
 Saya cemas: sangat..............tidak
 Saya sedih: selalu...................tidak pernah
 Dalam melihat masa depan: selalu takut.................tidak takut
 Keberadaan saya: tidak berarti & tanpa tujuan......sangat berarti & bertujuan
 Dalam mencapai tujuan hidup: tidak mencapai tujuan.....mencapai tujuan
 Hidup saya sekarang: tidak berarti..............sangat berarti
 Saya tidak dapat .......... Sangat dapat mengontrol hidup saya
 Sebagai pribadi: tidak baik..........................sangat baik
 Hari saya: sebagai beban...................sebagai anugerah
 Dunia tidak dapat ................sangat dapat memenuhi kebutuhan saya
 Saya merasa mendapat dukungan........................sama sekali tidak
Criteria for a QoL self asessment:

 Multidimentional
 Brief
 Consistently measures what is purpoted
 Sensitively used in clinical changes
 Clearly and significanty contribute to patient care
 Highly acceptable to patients
 Easily interpreted by clinicians and those measuring QoL
Effective communication is esential
Effective Communication:
 Influences patients’ understanding of their illness,
and perceptions of their life changes

 Facilitates acceptance and adjustment of their illness

and the restriction imposed on them

 Assisst in the goal setting and decision making:

I want to be able to walk again.

 Increases overall well being

Wallace, 2001
Home Care v.s Hospital Care
Roger Woodruff,1999

Advantage of home
Disadvantage of hospital

 Rigid
Comfort
timetable
 Impersonal
Privacy care
 Loss
Familiarity
of control
 Investigation
Security of questioned value
 Financial
Autonomycost
 Traveling
Reduced focus
distance
on for
illness
family and friends
 Close to family and friends
 Family involvement of care
Advantage of hospital
Disadvantage of home

 Physical and mental exhaustion

 Quality of symptom management

 Private life disruption

 Social life disruption

“Quality of death”
Field David and Gina Copp, 1999

Where the symptoms of dying are well controlled as

patients wish and where death is accepted
 Avoids futile interventions

Not doing everything

doesn’t mean doing nothing.
“The relief of suffering when cure is impossible should become
the heart of all medical services. It is what every patient and
family hopes for and has a right to expect. Therefore, each
health care professional has responsibility to provide it when it
is indicated”.

Derek Doyle, 1999