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2013.03.22. Autonomy y In medicine can be defined as the ability of the person to make his/her own decisions. y In moral and political philosophy: as an individual autonomy is an idea that is generally understood to y g y refer capacity to be one’s person, to live one’s life according to reasons and motives that are taken as one’s own and not the product of manipulative or distorting external forces. 18. 03. 2013 DEOEC Rehabilitation Department Dr. Éva Szabó 1 2 Autonomy Autonomy y The beginning: from birth to 3 months personal union with the mother y 4 months latter the beginning of the ego (I am and the mother are 2 different person) y 7‐8 months: separation anxiety but desire for autonomy y 3 years: ego is formed (I WANT, or DON’T want to do sg) y Autonomic adult: self‐direction self‐reliance self‐sufficiency liberty independence freedom 3 Autonomy? 4 The Elements of Autonomy y Patients with chronic disease: loose the control y Threshold elements: competence, voluntariness y depend on other persons (doctors, nurses, etc), and their disease y loose some roles (social, family), feeling uselessness y Information elements: disclosure, recommendation, understanding y Consent elements: decision, authorization C l d i i h i i y disturbance in communication skills y loose earlier personal goals, become unmotivated 5 6 1 2013.03.22. Compliance Barriers to compliance y 50s: compliance y Complexity of modern medication regimens y Latter adherence y Poor health literacy y 90s: concordance y Lack of comprehension of treatment benefits y The occurrence of undiscussed side effects y The cost of prescription medicine y Poor communication or lack of trust between the patient and his/her health‐care provider 7 8 Improving factors to compliance with treatment Improving factors to compliance with treatment y Only recommending treatments that are effective y Discussing possible side effects, and whether it is in circumstances when they are required y Selecting treatments with lower levels of side effect or fewer concerns for long‐term use f f l y Prescribing the minimum number of different medications y Simplifying dosage regime by selecting a different drug, or using a sustained release preparation that needs fewer doses during the day. important to continue medication regardless of those effects y Advice on minimising or coping with side effects d h d ff y Developing trust so patients don’t fear embarrassment or anger if unable to take a particular drug, allowing the doctor to try a better tolerated alternative 9 10 Quality Of Life QOL definition y as an important endpoint of medicine According to the WHO's 1997 the definition of quality of life is the individual's perceptions of his/her position in life, as it is influenced by s/ e g space cu u e, a ue sys e s, a d his/her living space culture, value systems, and his/her own goals, expectations, samples and relationships. It is a broadly interpreted concept that complicatedly involves the individual's physical health, psychological state, level of independence, social relationships, personal beliefs, as well as his/her relationship with the essential elements of the environment. y In 50s QOL was thought to be equal with material wealth y In 60s‐70s psychosocial well‐being I 6 h i l ll b i y In 70‐early 80s QOL was introduced widespreadly in health field 11 12 2 2013.03.22. Quality of life Why might QOL measures be useful? y The degree to which a person enjoys the important y A perfect clinical tool to argument the evaluation of rehabilitation needs possibilities his or her life. (The researchers definition of the University of Toronto’s Quality of Lif R h U it) Life Research Unit) y Their model is based on the categories being, belonging and becoming respectively who one is, how one is not connected to one’s environment, and whether one achieves one’s personal goals, hopes and aspirations y A perfect endpoint in evaluating clinical trials A f di f i di id l’ y A perfect predictor of an individual’s response to future treatment 13 14 Types of QOL measures questionnaire Assessment of QOL Generic y Tend to measure basic human values y Universally relevant y Cross population comparison y SF36, Satisfaction With Life Scale, Sickness Impact Profile, Nottingham Health Profile y Questionnaire: profile (generic, disease‐specific) or index y VAS (with/without questionnaire) y Ob Observation (with or without personal presence‐ i ( i h i h l video) y Proxy assessment (difficulties) Disease‐specific y Tend to measure one disease more specifically y Stroke, Rheumatoid Stroke Rheumatoid Arthritis, Cancer, Cardiovascular disease 15 QOL‐Health Related QOL QOL fields y Global health y Circumstancies, living standards y Psychological needs, well‐being, satisfaction y Social, family, relationships HRQOL fields y Physical, cognitional, emotional ability to function y Social ability to function (roles of daily living) y Evaluation of health status y Future prospects y Symptoms 17 16 Patient Reported Outcome PRO y Questionnaire used in a clinical trial, or a clinical setting, where the responses are collected directly from the patient. This information may, or may not, be of concern to the patient. y This patients’ perspective can play important role in drug approval 18 3 2013.03.22. PRO questionnaire construct y Symptoms (impairments) and other aspects of well‐ being y Functioning (disability) y Health status y General health perceptions y QOL y HRQOL y Reports and Ratings of health care 19 20 4