Paliatif - Kualitas Hidup
Paliatif - Kualitas Hidup
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)
49 items
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?
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.