Health Related Quality of Life (HRQoL)

WHO defines Quality of Life as an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.

1. Health Related Quality of Life ( HRQoL ) VISHWANATH GOUDA 1 st M. Pharm Department of Pharmacy Practice, NGSMIPS, NITTE (Deemed to be University)

2. Health A state of complete physical, mental, and social well-being not merely the absence of disease World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

3. Quality of Life Quality of life (QOL) is the general well-being of individuals and societies , outlining negative and positive features of life It observes life satisfaction, including everything from Barcaccia, Barbara. Quality Of Life: Everyone Wants It, But What Is It?"Forbes/ Education.[ updated 2013 Sep 4; cited 2018 Feb 18]. Available from https://www.forbes.com/sites/iese/2013/09/04/quality-of-life-everyone-wants-it-but-what-is-it/#6029d09c635d

4. QOL WHO defines Quality of Life as an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

5. Quality of Life QOL has a wide range of contexts, including the fields of  International development, Healthcare, Politics and employment. It is important not to mix up the concept of QOL with a more recent growing area of health related QOL (HRQOL).   Bottomley, Andrew (2002). "The Cancer Patient and Quality of Life“. The Oncologist.  7  (2): 120–125.

6. What is health-related quality of life? The concept have evolved since the 1980s To encompass the aspects of overall quality of life that can be clearly shown to affect health - either physical or mental at levels of On the individual level Includes physical and mental health perceptions (e.g., Energy level, mood) correlating with Health risks and conditions, functional status, social support, and socioeconomic status  At the community level Community-level resources, conditions, policies, and practices that influence a population’s health perceptions and functional status

7. HRQoL Its part of a person’s overall quality of life that “ represents the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient . Raskati KL. Essential of Pharmacoeconomic. 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p132

8. Quality of life and health related quality of life – is there a difference? Quality of life and HRQoL are used interchangeably in the literature but each has its own meaning. QoL is a broader concept which covers all aspects of life HRQoL has a focus on the effects of illness and specifically on the impact treatment may have on QoL QoL is therefore broader than HRQoL because it includes evaluation of non-health related features of life whereas HRQoL is connected to an individual’s health or disease status HRQoL can help us understand the distinction between aspects of life related to health. QoL can help us understand those aspects of life that extend beyond health such as education and the social environment

9. The importance of HRQoL Detect undiagnosed or undetected diseases such as depression Over all impact of diseases and their treatment Represent a patient’s estimation of his/her own health at a point To determine the burden of preventable disease, injuries, and disabilities, Can provide valuable new insights into the relationships between HRQoL and risk factors.  Centers for disease control and prevention[internet]. Health related quality of life. [updated 2016 May 31; cited 2018 Feb 19]. Available from: https://www.cdc.gov/hrqol/concept.htm

10. Figure1 . Deshpande PR, et al., Patient-reported outcomes: A new era in clinical research. Perspective in clinical research

11. Difference Between Symptoms And Health Related Quality of Life Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44

12. Raskati KL. Essential of Pharmacoeconomics . 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p134 World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

13. Generic measures Aim to cover the complete spectrum of function, disability and distress of the patient. Applicable to variety of populations. Measures HRQoL among various general groups. Revikumar GK. Pharmacoepidemiology and pharmacoeconomic. Hyderabad: Pharma med press; .p282

14. Medical outcome study short Form survey (MOS-SF) Is a multipurpose survey of general or generic health status SF-36 Useful in comparisons of relative burden of different diseases Useful in estimating the relative benefits of different treatment. The SF-36 assesses health-related quality of life in 8 areas: 1) limitations in physical activities because of health problems ; 2 ) limitations in social activities because of physical or emotional problems ; 3) limitations in usual role activities because of physical health problems; 4) bodily pain ; 5) general mental health ; 6) limitations in usual role activities because of emotional problems; 7) vitality (energy and fatigue) ; and 8) general health perceptions. SF-12 Raskati KL. Essential of Pharmacoeconomics . 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p135

15. Psychological General Well-Being Index (PGWBI) Used in clinical trials and epidemiological research to provide a general evaluation of self-perceived psychological health and well-being Consists of 22 items Grossi E, Groth N, Mosconi P, et al. Development and validation of the short version of the Psychological General Well-Being Index (PGWB-S). Health and Quality of Life Outcomes. 2006;4:88

16. WHOQOL-100 The structure of the WHOQOL-100 reflects the issues that a group of scientific experts as well as lay people in each of the field centres felt were important to quality of life. A total of 100 items in the assessment. All items are rated on a five point scale (1-5) WHOQOL includes the six broad domains of quality of life: 1. Physical Health Energy and fatigue Pain and discomfort Sleep and rest World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

17. 2. Psychological Bodily image and appearance Negative feelings Positive feelings Self-esteem Thinking, learning, memory and concentration 3. Level of Independence Mobility Activities of daily living Dependence on medicinal substances and medical aids Work capacity 4. Social Relations Personal relationships Social support Sexual activity World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

18. 5. Environment Financial resources Freedom, physical safety and security Health and social care: accessibility and quality Home environment Opportunities for acquiring new information and skills Participation in and opportunities for recreation/leisure Physical environment (pollution/noise/traffic/climate) Transport 6. Spirituality/Religion/Personal beliefs Religion/Spirituality/Personal beliefs World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

19. Disease specific instrument Provides greater detail concerning particular outcomes in term of functioning and well being associated with a disease condition and its treatment It covers specific disease, specific population or specific function. Revikumar GK. Pharmacoepidemiology and pharmacoeconomic. Hyderabad: Pharma med press;2016 .p284

20. Other types of instruments Dimension specific e.g. Physical Activity Index (PAI) Region/site specific e.g. Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) Individualized (instruments in which the respondent is allowed to select issues, concerns or domains of personal concern that are not predetermined by the investigator's list of questionnaire items) e.g. Schedule for the Evaluation of Individual Quality of Life ( SEIQoL ) Utility measures (considered as generic type but with one particular form of numerical evaluation of healthiness) e.g. Utility measure for major, unipolar depression ( McSad ) Summary items e.g. questions (regarding limiting enduring illness) in General Household Survey Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44

21. Domains of health status Four essential domains should be included in all HRQoL instruments: Physical functioning Psychological functioning Social functioning General health perception Raskati KL. Essential of Pharmacoeconomic. 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p136-138

22. Ideal Properties of HRQoL Instruments It should be specific to the concept being measured.. It should contain optimum number of items. It should have easy and specific measurement properties i.e. use of the scales which is easiest for the intended population to understand. It should maintain the confidentiality of the patient. It should be reproducible Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44

23. Factors affecting health related quality of life Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44

24. Assessing HRQoL Insruments Psychometric properties : Reliability Validity Responsiveness Raskati KL. Essential of Pharmacoeconomic. 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p138-140

25. Reliability Refer to the consistency of an instrument. Does the instrument produce the same score on multiple administration? Test-retest Internal consistency Interrater reliability Raskati KL. Essential of Pharmacoeconomic. 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p138-140

26. validity Refer to the extent to which differences in patient scores reflect the differences among individuals that the test developer sought to measure Purpose: whether the instrument is actually measuring what it is supposed to be measuring. For an instrument to be valid, it must first be reliable If researchers do not get reliable results upon readministration, they cannot assess whether these results actually measure the underlying concept Content validity Criterion validity Construct validity Raskati KL. Essential of Pharmacoeconomic. 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p138-140

27. Responsiveness Refer to its ability to detect changes in health status For instance if there is an instrument which is determining the quality of life of breast cancer patient, then it should be able to predict the quality of life after the treatment. The quality of life score should be able to predict the improvement/stability in condition/worsening Raskati KL. Essential of Pharmacoeconomic. 2 nd edition. Philadelphia: Wolters Kluwer Health;2013. p138-140 Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44

28. Uses of HRQoL Measurement In medical practice Improving the doctor-patient relationship Assessing the effectiveness and relative merits of different treatments Health services evaluation In research In policy making World health organization. The uses of the WHOQOL instruments .[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/index3.html

29. Thank you

30. List of references Raskati KL. Essential of Pharmacoeconomic. 2nd edition. Philadelphia: Wolters Kluwer Health;2013. p131-140 Revikumar GK. Pharmacoepidemiology and pharmacoeconomic. Hyderabad: Pharma med press;2016 .p279-287 Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44 Grossi E, Groth N, Mosconi P, et al. Development and validation of the short version of the Psychological General Well-Being Index (PGWB-S). Health and Quality of Life Outcomes. 2006;4:88 Bottomley, Andrew (2002). "The Cancer Patient and Quality of Life“. The Oncologist. 7 (2): 120–125 Deshpande PR, Rajan S, Sudeepthi B L, Abdul Nazir C P. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res 2011;2(4):137-44 World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/

31. 8. World health organization. The uses of the WHOQOL instruments .[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/index3.html 9. Centers for disease control and prevention[internet]. Health related quality of life. [updated 2016 May 31; cited 2018 Feb 19]. Available from: https://www.cdc.gov/hrqol/concept.htm 10. World health organization. Health statistics and information systems, Introducing the WHOQOL instruments.[cited 19 feb 2018]. Available from http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/ 11. Barcaccia, Barbara. Quality Of Life: Everyone Wants It, But What Is It?"Forbes / Education.[ updated 2013 Sep 4; cited 2018 Feb 18]. Available from https://www.forbes.com/sites/iese/2013/09/04/quality-of-life-everyone-wants-it-but-what-is-it/#6029d09c635d