Understanding Quality of Life in Chronic Diseases: A Nurse Practitioner's Perspective
Explore insights on maintaining quality of life while living with chronic diseases from the perspective of retired Nurse Practitioner, Pamela J. West. Discover the challenges, objectives, and tough decisions individuals face when dealing with conditions like aplastic anemia, myelodysplasia, and PNH. Gain a deeper understanding of the meaning of quality of life, treatment complexities, and the importance of balancing disease management with well-being.
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QUALITY OF LIFE -- WHEN DEALING WITH A CHRONIC DISEASE (EASY TO SAY HARDER TO PLAY DAY BY DAY ) Pamela J. West, RN(EC), NP-ADULT, MSc. Nurse Practitioner (retired), Oncology/Supportive Care
SO WHO AM I AND WHY DO I TALK ABOUT THIS .??? Worked with patients/families for 48 years > +++ sharing & tons of learning from patients/caregivers
OBJECTIVES OF THIS TALK BY THE END OF THIS YOU WILL: 1. KNOW THE MEANING OF QUALITY OF LIFE (QOL) 2. UNDERSTAND 3-4 WAYS TO TRY TO ACHIEVE IT 3. BE ABLE TO SHARE WHAT YOU LEARN WITH A FAMILY MEMBER OR FRIEND
SOME OF WHAT I AM GOING TO SAY .IS TOUGH . but work that needs to be done to help achieve a certain Quality in YOUR life!! One s Life
APLASTIC ANEMIA, MYELODYSPLASIA AND PNH ULTRA-RARE DISEASES (LITTLE KNOWN ABOUT PSYCHOSOCIAL ISSUES) DISEASES: COMPLEX: MANY TREATMENT APPROACHES EG. IMMUNOSUPPRESSION, BMT, COMPLEMENT INHIBITION & OTHERS *COUPLED WITH YOUNG AGE (OFTEN) - MARROW FAILURE *NOT SPECIFICALLY CLASSIFIED AS MALIGNANT (A CANCER) - PEOPLE FEEL LOST IN THE SYSTEM (BLOOD, 2016)
WHAT IS QUALITY OF LIFE ?? (REALLY??) Is it possible to see quality in life ? Is it possible to experience quality in life ? (Some diseases seem full of doom & gloom)
WE KNOW FOR MAJORITY --- MOST IMPORTANT REASON TO UNDERGO TREATMENT PRESERVATION OF (OR IMPROVEMENT IN QUALITY OF) LIFE. MANY: OTHER DISEASES (CO-MORBIDITIES) AFFECT TREATMENT OUTCOMES, TREATMENTS NOT WITHOUT TOXICITIES (OCCASIONALLY EXPERIENCED AS WORSE THAN DISEASE ITSELF) (M. PUTS, 2017) So many factors impact quality of life & treatment tolerability
WHEN YOU MAKE DECISIONS ABOUT TREATMENT YOU ENTER. THE BIG CLOUD OF UNKNOWING
LETS EXPLORE DEFINITIONS TO ENSURE WE ARE ON THE SAME PAGE
Quality of life (QOL) -general well-being of individuals/societies, outlining negative & positive features of life. -observes life satisfaction: everything from physical health, family, education, wealth, employment, religious beliefs, finance and environment QUALITY OF LIFE SHOULD NOT BE CONFUSED WITH THE CONCEPT OF STANDARD OF LIVING BASED PRIMARILY ON INCOME (WIKIPEDIA, 2017)
Meaningful and valuable life experiences and the capacity to have such experiences David Roy Closely tied to autonomy with capacity and right to determine our own future A COUPLE MORE DEFINTIONS Q OF L
QUALITY of LIFE (Q of L) WIDE RANGE OF CONTEXTS, INCLUDING FIELDS OF INTERNATIONAL DEVELOPMENT, HEALTH CARE, POLITICS & EMPLOYMENT. IMPORTANT NOT TO MIX UP Q OF L WITH GROWING AREA OF HEALTH RELATED Q OF L (HRQOL). ASSESSMENT OF HRQOL = EVALUATION OF Q OF L & ITS RELATIONSHIP WITH HEALTH.
MEDICAL DEFINITION OF QUALITY OF LIFE THE PATIENT'S ABILITY TO ENJOY NORMAL LIFE ACTIVITIES QUALITY OF LIFE IS AN IMPORTANT CONSIDERATION IN MEDICAL CARE [& IN RESEARCH: NO LONGER O.S. AS OUTCOME] SOME MEDICAL TREATMENTS SERIOUSLY IMPAIR QUALITY OF LIFE WITHOUT PROVIDING APPRECIABLE BENEFIT, WHEREAS OTHERS GREATLY ENHANCE QUALITY OF LIFE MEDICINECOM AUG14/17
HRQofL improved markedly from T-D to T-I (the variable being studied is hgb and anemia) Lenalidomide vs placebo, (Santini et al., Blood, 2018) Study showed BENEFIT with less fatigue, less dyspnea, Better physical and emotional functioning and generally an improved global quality of life CANNOT EMPHASIZE ENOUGH: VALUE OF ACHIEVING TRANSFUSION INDEPENDENCE IN NON-DEL(5Q), LOWER-RISK MDS (GOOD GOAL FOR MANY PTS)
LIFE IS MEASURED FROM BIRTH TO DEATH BY HAPPINESS ACCRUED OVER TIME
Cancers {& blood related dyscrasias} affect self-esteem: Self-esteem means self- satisfaction, self respect & self worth: feelings that threaten physical health & affect quality of life Cancer Research, UK, 2014
Quality of Life Studies and instruments designed for cancer patients TOOL DEVELOPED Inappropriate for Ultra rare diseases eg. AA, PHN, etc. (S&S/Rxs differ, ages vary often younger, etc.)
HOW TO DEVELOP SUCH AN INSTRUMENT/TOOL??? Focus Group of patients Q of L issues (phase I)/docs - then documented interview with each individual-- Generated Preliminary Questionnaire developed (phase II) Evaluated Questionnaire by representative group of patients (Phase III) Psychometric (reliability and validity) evaluation of Questionnaire (Phase IV)
Phase I Phase II* 30 patients & 14 docs 19 patients & 8 docs Rerated by importance & Generated 649 Q of L issues then Condensed to 97 items condensed to 175 *DOCS RATED FATIGUE AS NO. 1 PTS RATED MUTUAL TRUST BETWEEN PTS & DOCS AS NO. 1
PHASE III PHASE IV* Modifications in wording/phrasing led to 2 questionnaires with 67 items re: Q of L & 20 more items re: medical care Issues such as Nausea, Loss of appetite, constipation, diarrhea NOT IMPORTANT Constant fear of infection, blood count variation, dependency on time-consuming therapies & emotional strain thru disease burden Final questionnaire no more than 40 items * CONCLUSION: EVEN IN ULTRA-ORPHAN DISEASES - SPECIFIC Q OF L TOOLS FEASIBLE (WITH SUPPORT OF PTS/PT ADVOCACY GRPS)
QUALMS (38 item tool) NOW BEING STUDIED Takes 10 minutes to do Three subscales: Physical Burden, Emotional Burden & Benefit-Finding* Helps identify relevant/accurate way to assess impact of interventions in clinical settings with MDS Studies before/after transplant, in three different countries (5 different centres) divided by >65 yrs // <65 yrs to capture differences, transfusion dependent and independent **Benefit-finding = better coping, decreased psychosocial distress,
QUALITY OF LIFE IN MYELODYSPLASIA SCALE (QUALMS) Benefits to M.D.S-specific tool help: 1) facilitate approval of disease-altering therapies (FDA focus on Pt-reported outcomes) 2) permit docs to more specifically advise patients about risks/benefits of new therapies in context of current QofL 3) provide more precise measurement of QofL to detect actual differences between treatments being tested (if they exist)
WORLD HEALTH ORGANIZATIONS DEFINITION of QUALITY of LIFE An individual s perception of his/her position in life in context of: culture & value systems in which they live & in relation to goals University of Toronto says: Ultimate goal of quality of life study & subsequent applications enables people to live quality lives -- lives that are both meaningful and enjoyed.
POTENTIAL WORK TO ACCOMPLISH YOUR Q OF L
If you need help = ASK for it! Set limits/boundaries for yourself Learn about energy conservation and PRACTISE it! BEING INVOLVES PHYSICAL, PSYCHOLOGICAL & SPIRITUAL If you don t understand ask and if you still don t understand ASK again!! Be selfish share what you want when you want to! eg. Choice of music, last piece of pie, etc. BEING Be real/honest with yourself and others Don t be a martyr Revisit religion or GOD or a higher power/spiritual being
If need help ask! When others volunteer accept it! Have fun = do things you ENJOY. Don t isolate yourself: MORE time with family/friends Put affairs in order, POAs, will, - A relief for you gift for family/friends. Say what you want for your grand finale (can t talk it ? write it) Follow suggestions of h.c.p. if possible Accomplish ONE GOAL daily phone call, eat ice cream, see funny movie, cheer team Meditate 10 minutes twice a day Leaves 23 hr 40 min for other stuff Seek normalcy Need to feel worthy/able to do normal/every day things BECOMING INVOLVES PRACTICAL, LEISURE & GROWTH BECOMING
Use touch if it brings you/others pleasure Laugh at yourself enjoy others humour BELONGING INVOLVES PHYSICAL, SOCIAL & COMMUNITY BELONGING Accept & give love generously Say NO gets easier over time prioritize what YOU WANT! COMMUNICATE openly: no matter how close you are: he/she can t read your mind Figure out your legacy what you want to be remembered for If sad or depressed: tell your medical team Depression = under recognized, under diagnosed & under-treated
DECIDE ON 1-2 DESIGNATED PARTNERS-IN-CARE FOR PT (ONE PERSON AS POINT PERSON: KEEP EXTENDED FAMILY/FRIENDS INFORMED & ONE TO CONNECT WITH HEALTH CARE TEAM WHEN INFO NEEDS TO BE SHARED GET TO KNOW CARE TEAM WRITE ??? S REMEMBER SELF-CARE & CARE-GIVER FATIGUE SHOW YOUR LOVE. YOUR PRESENCE & LITTLE ACTS OF KINDNESS REALLY HELP LITTLE THINGS MEAN A LOT CATHY FIORDALLSI -SMITH , 2017) ..great deal of emotions you experience anger, fear, jealousy, very dark moments. But also, a great sense of empowerment because you have to fight and you have to make choices that are extremely difficult. you re facing your mortality and it is an incredibly personal journey Fran Lowry (taken from MEDSCAPE, Aug 22/2017)
I USED TO WANT TO PACK AS MUCH AS I COULD INTO MY LIFE, BUT NOW I REALIZE IT S MORE ABOUT QUALITY THAN IT IS ABOUT QUANTITY ANONYMOUS
WE MUST ACCEPT LIFE FOR WHAT IT ACTUALLY IS A CHALLENGE TO OUR QUALITY WITHOUT WHICH WE SHOULD NEVER KNOW OF WHAT STUFF WE ARE MADE OF OR GROW TO OUR FULL STATURE IDA WYLIE
YOU YOU are the only one who can control your thoughts and actions.NO ONE ELSE. It s up to you to do the work. Build new mental habits to improve the QUALITY OF YOUR LIFE and those around you! Find peace of mind. Pick and choose your battles. Choose where and how to invest your precious time and energy. BELIEVE IN YOURSELF! TAKE YOUR POWER BACK! AKIROQ BROST
ANY ANY QUESTIONS??? QUESTIONS??? THANK YOU VERY MUCH!!
