1. Susan Fowler, PhD, RN, CNRN Member, Nurse Advisory Board (NAB) Clinical Nurse Researcher & Director VNACJ, Red Bank, NJ

2.  Take a moment and write down your answer to this question.

4.  A peculiar or essential character  A degree of excellence  A social status  A distinguishing attribute  A vividness of hue

8.  Philosophical ◦ Definition  Economical ◦ Profit margin ◦ Marketing equilibrium  Marketing ◦ Buying behavior ◦ Customer satisfaction  Operations Management ◦ Engineering practices ◦ Manufacturing control  Can we apply this approach to health care?

9.  Manufacturer ◦ Concerned with design, engineering, and manufacturing processes  Consumer ◦ Satisfaction – preferences and expectations ◦ May have nothing to do with the function of the product  Product itself ◦ As a system and its operation and functionality  Can we apply this view to health care?

12.  State or mode of living  Experience of being alive  Quality that distinguishes a vital & functional being from a dead body  A principle that underlies the distinctive quality of animate beings  Course of existence  Biological ◦ Motion ◦ Reproduction ◦ Metabolism ◦ Consumption & growth ◦ Stimulus response  Philosophical/religio us ◦ Being ◦ Purpose and significance ◦ “Why are we here?”

17.  The first goal of Healthy People 2010 is to help individuals of all ages increase their life expectancy and improve their quality of life.  US DHHS, p. 8

18. YOU – subjective; self- report Others – objective (how you perform on a physical test; the amt. of money in your pocket; your economic classification based on your income, etc.)

19.  Quality of life  Health ◦ General ◦ Physical ◦ Psychological ◦ Spiritual ◦ Opposite of disease (a continuum)  Health related quality of life  Well-being ◦ Wellness ◦ General ◦ Body, mind, soul ◦ Physical, psychological, spiritual  Functional status ◦ Activities of daily living (daily life)

20.  The degree to which a person enjoys the important possibilities of his/her life (Univ. of Toronto)  Subjective QOL is about feeling good and being satisfied with things in general. Objective QOL is about fulfilling the societal and cultural demands for material wealth, social status, and physical well-being (Denmark)

21.  The metaphysical domain includes self-esteem, self- determination, cognition, purpose, optimism and life satisfaction.  The spiritual domain includes prayer, worship, fellowship and meaning.  The biological domain involves functional capacity, physical comfort, health promotion and health maintenance.  The interpersonal domain includes social support, interpersonal dynamics and cultural dynamics.  The environmental domain includes socioeconomic status, transportation, assistive devices, safety and aesthetics.  The societal domain includes one’s personal social system and the global societal system. (Advances in Nursing Science, 2006)

22.  Being ◦ Who you are ◦ Physical-health, personal hygiene, nutrition, etc. ◦ Psychological- adjustments, cognitions, feelings, self-control, etc. ◦ Spiritual-values, standards of conduct, spiritual beliefs, etc.  Belonging ◦ Your fit in your environment ◦ Physical, Social, Community  Becoming ◦ Your purposeful activities to achieve goals, hopes, & wishes ◦ Practical (day-to-day), Leisure, Growth (improve self) (U of Toronto)

23.  Busch et al. (1996) ◦ 86 subjects ◦ After thymectomy ◦ For those with moderate to severe disease, QOL same as others but some emotional deficits  Padua et al. (2001) ◦ 46 subjects ◦ Clinical assessment related to patients’ QOL ◦ As muscle deficit progresses not necessarily a decreased in mental status ◦ But even with mild disease, some decline in mental status  Paul et al. (2002) ◦ 27 subjects ◦ A negative functional status impacts physical functioning, emotions, and social health ◦ Persons with MG accommodate their physical activities and have the same general QOL as general population  Kittiwatanapaisan et al. (2003) ◦ 67 subjects ◦ Fatigue correlates with depression ◦ When control fatigue, fatigue correlated with activity restriction & years of dx  Leonardi et al. (2010) ◦ 102 subjects ◦ Disability correlates with health-related QOL ◦ Disability impacts physical QOL more than mental health ◦ Disease severity impacts QOL

24.  Healthy Days (4 questions); Activity Limitations (5); Healthy Days Symptoms (5)  Healthy Days ◦ Would you say that in general your health is  Excellent  Very good  Good  Fair  Poor  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?  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?  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?

25.  All of the time; Most of the time; More than half of the time; Less than half of the time; Some of the time; At no time  I have felt cheerful and in good spirits  I have felt calm and relaxed  I have felt active and vigorous  I woke up feeling fresh and rested  My daily life has been filled with things that interest me

26.  Subscale of the Multilevel Assessment Instrument (Lawton et al., 1982)  Overall health ◦ poor, fair, good, excellent  Health compared to 3 years ago ◦ Not as good, same, better  Health problems stand in your way ◦ A great deal, a little, not at all  Health compared to people your age ◦ Not as good, same, better

27.  Self-report, general survey for monitoring outcomes in patients with chronic conditions  In general, would you say your health is: ◦ Excellent, Very Good, Good, Fair, Poor  During the past 4 weeks, have you had any of the following problems with your work or other regular activities as a result of your physical health? ◦ Accomplished less than you would like  Yes or No  These questions are about how you feel and how things have been with you during the past 4 weeks. How much of the time during the past 4 weeks… ◦ Did you have a lot of energy?  All the time, Most of the time, A good bit of the time, Some of the time, A little of the time, None of the time

28.  Burns et al., (2008)  15 items from a 60 item instrument  Mobility (9), Symptoms (3), General Contentment (1), Emotional Well-being (2)  Please indicate how true each statement has been (over the past four weeks): ◦ I have trouble using my eyes  Not at all; A little bit; Somewhat; Quite a bit; Very much ◦ I have trouble driving  Not at all; A little bit; Somewhat; Quite a bit; Very much ◦ I feel overwhelmed by my condition  Not at all; A little bit; Somewhat; Quite a bit; Very much

29.  Quality is defined differently depending on your frame of reference  Quality of life is multidimensional  QOL can vary depending on the timeframe and situation

31.  Youtube.com