KUALITAS HIDUP

• WHO  Sehat adalah keadaan sejahtera fisik, mental, dan

sosial, tidak hanya terbebas dari penyakit/kelemahan.
• Pengukuran kesehatan dan efek dari perawatan kesehatan
tidak hanya meliputi perubahan keparahan penyakit tetapi
juga perkiraan sejahtera yang dapat dinilai dari kualitas
hidup berhubungan dengan kesehatan dan perawatannya
Kualitas hidup
• Kualitas hidup: persepsi individu mengenai posisi mereka
dalam kehidupan dilihat dari konteks budaya dan sistem
nilai dimana mereka tinggal serta hubungannya dengan
tujuan, harapan, standar, dan perhatian mereka (WHO,
1997).
• Kualitas hidup terkait kesehatan = Health Related QOL
(HRQOL  mengacu pada kualitas hidup yang terkait
dengan kondisi kesehatan.
• HRQOL  penilaian subjektif terhadap doman fisik,
psikologis, dan sosial dari kesehatan
• HRQOL dapat untuk mengukur hasil perawatan
kesehatan
• HRQOL efek penyakit dan perawatannya yang
dirasakan oleh pasien
• HRQOL adalah konsep multidimensional yang mencakup
komponen fisik, emosional dan sosial yang berkaitan
dengan penyakit dan perawatannya
• Evaluasi kualitas hidup harus memperhitungkan tiga faktor
yang saling terkait: fisik (misalnya kecacatan, nyeri);
psikologis (misalnya suasana hati, tingkat kecemasan dan
depresi); sosial (misalnya keterasingan dari lingkungan,
kesempatan untuk melakukan peran sosial)
• Fungsi fisik  kemampuan untuk melakukan berbagai
aktivitas kehidupan sehari-hari, serta gejala fisik akibat
penyakit atau perawatan.
• Fungsi psikologis  tekanan psikologis yang parah
hingga rasa positif kesejahteraan dan mungkin juga
mencakup fungsi kognitif.
• Fungsi sosial  aspek kuantitatif dan kualitatif dari
hubungan sosial dan interaksi dan integrasi masyarakat
• Sebelumnya, penelitian tentang kualitas hidup terfokus pada
aspek objektif, cenderung mengabaikan yang subjektif.
• Awalnya mencakup antara lain status kesehatan dan sosio-
ekonomi seseorang (pekerjaan, pendapatan keluarga, waktu
luang); kemudian menekankan tingkat kepuasan hidup,
kepuasan akan kebutuhan dan partisipasi seseorang dalam
struktur sosial
• Awalnya, peneliti mempelajari kualitas hidup ditujukan
terutama pada faktor obyektif. diukur dengan jumlah barang
dan jasa yang dapat dimiliki individu
• Karena orang merespons perubahan lingkungan mereka
secara berbeda, maka pertimbangan persepsi subyektif harus
menjadi dasar penilaian kualitas hidup
Aspek psikososial dari kualitas hidup terkait kesehatan
antara lain
• takut terhadap pengobatan dan kehilangan efisiensi fisik
dan mental
• takut kehilangan kemampuan untuk bekerja dan mencukupi
kebutuhan keluarga.
• takut kehilangan kemampuan diri dan kemandirian
• ketakutan akan isolasi sosial dan penarikan diri dari
aktivitas sosial.

 penilaian kualitas hidup tidak hanya pada penilaian gejala

atau ketidaknyamanan pengobatan, namun harus
mempertimbangkan setiap aspek aktivitas seseorang
sebagai dampak dari penyakit
Sebagian besar penelitian tentang kualitas hidup terkait
kesehatan berpusat pada kelompok berikut:
1) menderita penyakit kronis (kanker, AIDS, diabetes,
epilepsi dll)
2) cacat atau sakit parah yang memerlukan perawatan
medis dan perawatan konstan
3) hidup dalam kondisi stres (tinggal di rumah sakit atau di
kamp pengungsian, lansia)
4) menderita gangguan kepribadian
5) anak-anak
• Pengukuran kualitas hidup terkait kesehatan pertama kali
digunakan pada onkologi.
• Pengukuran tersebut mempertimbangkan tiga dimensi
berikut ini:
1) keadaan fungsional pasien dengan gejala umum dan
spesifik;
2) dimensi psikologis;
3) aspek sosial, seperti keluarga, dukungan sosial, status
ekonomi dll
• Kemudian, pengukuran ditambahkan dimensi spiritual.
• Pada lansia, diasumsikan bahwa kualitas hidup berkaitan
dengan kepuasan hidup pada periode tersebut (Bowling,
1995).
• Pada penyakit kronis, kualitas hidup bergantung pada
rehabilitasi komprehensif (medis, pekerjaan, psikososial)
(Tobiasz - Adamczyk, 1996).
• Pada penyakit dermatologis, perhatian khusus diarahkan
pada dampak negatif penampilan fisik pada hubungan
sosial dan interpersonal (Papadopoulos, Bor, 1999).
 Pengukuran kualitas hidup
• Pendekatan yang berbeda digunakan dalam penilaian
HRQOL, seperti konteks umum vs spesifik,
mempertimbangkan satu dimensi, atau konteks yang lebih
luas
• Self- or interviewer-administered questionnaires
• Generic instruments that provide a summary of HRQL; and
specific instruments that focus on problems associated
with single disease states
Data Collection
• Mode: self-administered vs. interview
• Self-admin: Reading ability, fine-motor skills
• Interview: Hearing problems, age/gender/ethnicity
sensitivity, training of interviewer
• Either: language
• Content
• Instrument validity
• Sensitivity of questions
• Frame of reference (cognitive skills, privacy, cultural
background)
• Source(s)
• Patient vs family vs health care provider
Measuring QOL

How are you feeling today?

Happy Miserable
Pengukuran QOL
• Spesifik
Jenis instrumen ini mengevaluasi serangkaian dimensi
kesehatan yang spesifik untuk suatu penyakit.

Umum
Instrumen ini bisa digunakan dengan populasi apapun.
Mereka umumnya mencakup persepsi tentang kesehatan
secara keseluruhan dan juga pertanyaan tentang fungsi
sosial, emosional dan fisik, rasa sakit dan perawatan diri.
Generic instruments
• CDC HRQOL–14 "Healthy Days Measure": A questionnaire with
four base questions and ten optional questions used by the Center
for Disease Control and Prevention (CDC)
(https://www.cdc.gov/hrqol/hrqol14_measure.htm).
• Short-Form Health Survey (SF-36, SF-12, SF-8): One example
of a widely used questionnaire assessing physical and mental
health-related quality of life.
• EQ-5D a simple quality of life questionnaire (https://euroqol.org).
• AQoL-8D a comprehensive questionnaire that assesses HR-QoL
over 8 domains - independent living, happiness, mental health,
coping, relationships, self worth, pain, senses
(https://www.aqol.com.au).
• WHO-Quality of life-BREF (WHOQOL-BREF): A general Quality
of life survey validated for several countries
Disease, disorder or condition specific
instruments
• International Consultation on Incontinence Questionnaire-
Short Form (ICIQ-SF) in urinary incontinence
• Manchester Short Assessment of Quality of Life: 16-item
questionnaire for use in psychiatric populations.
• ECOG, most commonly used to evaluate the impact of cancer on
sufferers.
• NYHA scale, most commonly used to evaluate the impact of
heart disease on individuals.
• EORTC measurement system for use in clinical trials in oncology
• The Stroke Specific Quality Of Life scale SS-QOL:
assessment of health-related quality of life (HRQOL) specific to
patients with stroke. It measures energy, family roles, language,
mobility, mood, personality, self care, social roles, thinking, upper
extremity function, vision and work productivity
• Quality of Life in Epilepsy Scale-10
• Asthma Quality of Life Questionnaire
Generic QoL Assessment
Self Evaluation of Quality of Life (Danish EQoL)

Good collection of demographic / prognostics data essential:

Age Sex Height Weight Marital status Domestic

Residence Housing Education Occupation Income
Goods Circumstances Lifestyle Exercise Smoking
Social network Friends Eating Alcohol Drugs
Symptoms Health Sexuality Self- Perception
Life-Perception Satisfaction Need-Fulfilment Ethnicity
Disease Specific QoL

Stroke-Specific Quality of Life Scale ( SS-QOL)

49 items

Strongly Moderately Neither Moderately Strongly

agree agree agree disagree disagree

“I felt tired most of the time”

“I had to stop and rest often during the day”
“I felt I was a burden to my family”
“My physical condition interfered with my daily life”
“I felt hopeless about my future”
“I was not interested in food” Williams et al. 1999
Disease Specific QoL

Stroke-Specific Quality of Life Scale ( SS-QOL)

49 items
12 domains covered Mobility
Energy Physiology
Upper Extremity Function Medical
Vision
Personality
Mood Psychology
Language Cognitive
Thinking
Self-care
Social roles Activity
Family Roles Social
Work / Productivity
DOMAIN QOL WHO
• The Physical Health domain includes questions pertaining to
sleep, energy, mobility, the extent to which pain prevents
performance of necessary tasks, the need for medical treatment to
function in daily life, level of satisfaction with their capacity for
work.
• The Psychological domain focuses on the ability to concentrate,
self-esteem, body image, spirituality i.e. the extent to which they
feel their life is meaningful, the frequency of positive or negative
feelings i.e. blue mood, despair, anxiety, depression.
• The Social Relationships domain includes questions pertaining
to satisfaction with personal relationships, social support systems
and sexual satisfaction.
• The fourth domain, the Environment, includes questions related
to safety and security, home and physical environment
satisfaction, finance i.e. does the respondent have enough money
to meet their needs, health/social care availability, information and
leisure activity accessibility and transportation satisfaction
McGill Quality of Life Questionnaire
(MQOL)
• is designed specifically for palliative care patients
• four main relevant domains: physical, psychological,
existential, and social.
• physical and psychological  a high score is negative,
existential and support  a high score is positive
• It comprises 16 items and also a single item rating overall
QOL.
• single-item score (SIS) is useful in indicating the patient’s
perception of his/her QOL taken as a whole.
• The MQOL is also preferred because the existential
domain can be measured. The existential domain
explores the perception of purpose, meaning in life, and
the capacity for personal growth and transcendence
http://www.jpsmjournal.com/article/S0885-3924(14)00229-2/fulltext
The SIS score was low, at 4.12 of 10. The mean score of the MQOL total was 5.09 of 10. The item with the lowest score
was the third physical symptom ranked by patients. The mean score for this item was low, at 3.28 of 10. The mean score of
the first physical symptom was the highest of the three physical symptoms, indicating that it is the most troublesome to
patients (6.83).
The five physical symptoms most frequently listed on the MQOL were pain, loss of appetite, fatigue, powerless, and
dyspnea
In terms of the subscales, the subscale with the lowest score was existential well-being (4.65), followed by physical well-
being (4.69), psychological well-being (5.29), and support subscales (6.82).
McGill Quality of Life Questionnaire-Revised
• Palliat Med. 2017 Feb;31(2):120-129. doi: 10.1177/0269216316659603. Epub 2016 Jul 18.
• Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-Revised.
• Cohen SR1,2, Sawatzky R3,4, Russell LB4,5, Shahidi J6, Heyland DK7,8, Gadermann AM4,9.
• Author information
• Abstract
• BACKGROUND:
• The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since
its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over
time.
• AIM:
• To revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire-Revised) while maintaining or improving its
psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable
comparison with existing McGill Quality of Life Questionnaire literature.
• DESIGN:
• Data sets from eight studies were used (four studies originally used to develop the McGill Quality of Life Questionnaire, two to
develop new McGill Quality of Life Questionnaire versions, and two with unrelated purposes). The McGill Quality of Life
Questionnaire-Revised was developed using analyses of measurement invariance, confirmatory factor analysis, and calculation of
correlations with the McGill Quality of Life Questionnaire's global quality of life item.
• SETTING/PARTICIPANTS:
• Data were from 1702 people with life-threatening illnesses recruited from acute and palliative care units, palliative home care
services, and oncology and HIV/AIDS outpatient clinics.
• RESULTS:
• The McGill Quality of Life Questionnaire-Revised consists of 14 items (plus the global quality of life item). A new Physical subscale
was created combining physical symptoms and physical well-being and a new item on physical functioning. The Existential
subscale was reduced to four items. The revised Support subscale, renamed Social, focuses more on relationships. The
Psychological subscale remains unchanged. Confirmatory factor analysis results provide support for the measurement structure of
the McGill Quality of Life Questionnaire-Revised. The overall scale has good internal consistency reliability ( α = 0.94).
• CONCLUSION:
• The McGill Quality of Life Questionnaire-Revised improves on and can replace the McGill Quality of Life Questionnaire since it
contains improved wording, a somewhat expanded repertoire of concepts with fewer items, and a single subscale for the physical
domain, while retaining good psychometric properties.
• KEYWORDS:
• Quality of life; chronic disease; emotional adjustment; end-of-life care; existentialism; family relations; palliative care; psychometrics;
spirituality
• PMID: 27412257 DOI: 10.1177/0269216316659603
 Core Healthy Days Measures
1. Would you say that in general your health is excellent, very good,
good, fair, or poor?

2. Now thinking about your physical health, which includes physical

illness and injury, for how many days during the past 30 days was
your physical health not good?

3. Now thinking about your mental health, which includes stress,

depression, and problems with emotions, for how many days during
the past 30 days was your mental health not good?

4. During the past 30 days, for about how many days did poor
physical or mental health keep you from doing your usual
activities, such as self-care, work, or recreation?
Unhealthy Days = days in the past 30 days when both
physical and mental health were not good
= Physically = Mentally = Healthy day
unhealthy day unhealthy day
 Keperluan pengukuran kualitas hidup
• Menilai efek medis dan non medis perawatan kesehatan
dan pengobatan terhadap kesejahteraan pasien.
• dapat mengindikasikan area masalah yang perlu dikaji
lebih lanjut dan dapat membantu tenaga kesehatan dalam
merancang intervensi yang sesuai.
• Menentukan program intervensi yang tepat
• Mengukur HRQOL dapat membantu menentukan beban
penyakit, cedera, dan cacat yang dapat dicegah
• Peningkatan jumlah orang dengan penyakit kronis 
mempengaruhi kualitas hidup
• HRQOL  konstruk multidimensi yang terdiri dari
setidaknya tiga domain (fungsi fisik, psikologis, dan sosial)
- yang dipengaruhi oleh penyakit dan/ atau perawatan
seseorang.
• Perkiraan dampak relatif penyakit kronis pada HRQoL
diperlukan untuk merencanakan dan mendistribusikan
sumber daya perawatan kesehatan dengan lebih baik
untuk mendapatkan HRQoL yang lebih baik.
• HRQoL untuk mengevaluasi dampak penyakit dan efek
intervensi medis, oleh karena itu, peningkatan HRQoL
dianggap sebagai hasil primer yang penting dan penentu
manfaat terapeutik.
• Untuk menilai efisiensi pengobatan yang dipilih dengan
mempertimbangkan perspektif pasien. Walaupun perawatan
yang digunakan tidak sepenuhnya memulihkan kesehatan,
setidaknya mengembalikan QoL ke tingkat yang dapat
diterima.