Ervaringen met kanker: Reflecties op onderzoek naar kwaliteit van leven

Ervaringen met kanker: Reflecties op onderzoek naar kwaliteit van leven Mirjam Sprangers Utrecht, 16 maart, 2018 Academisch Medisch Centrum, Amsterdam

Background Earlier version presented at the 2014 conference of the International Society of Quality of Life Research

Background Earlier version presented at the 2014 conference of the International Society of Quality of Life Research Screenshot paper

Personal Perspective on QoL Experiences with cancer deepened my understanding of QoL and affected my perspective on QoL research The objective is to share my lessons learned and describe how they can help making our research more meaningful

Personal History (2009-2010) Koosje Sprangers-Rave

Personal History (2011-2012) Theo Jonkergouw

Loes Rave Personal History (2012)

Personal History (2012) Loes Rave Rie Onderwater

Personal History (2012) Loes Rave Rie Onderwater Pier van Gorkum

Personal History (2013)

Personal History (2013-2014)

Personal History (2014-date)

Lesson 1 The way we measure QoL with our standard measures would not have captured the QoL that my beloved ones and I have experienced

Retrospective evaluations of QoL Standard questionnaires and item banks

Lesson 2 QoL is influenced by how one gives meaning to the disease experience, how it relates to one s life goals and fits one s life narrative

Overall meaning of QoL Life goals, life narrative Retrospective evaluations Standard questonnaires and item banks

Falling ill: contingent life event biographical disruption

Falling ill: contingent life event biographical disruption Contingent = that which can happen but does not have to happen

Falling ill: contingent life event biographical disruption Meaning making by telling stories Contingent = that which can happen but does not have to happen

Theoretical model Contingent life event Experience of contingency Narrative meaning making Narrative integration Quality of Life Worldview Ultimate life goals

RE-LIFE Reconstruction of Life Events Questionnaire

Lesson 3 QoL is also influenced by the daily fluctuations and the rhythm of symptoms and mood

Overall meaning of QoL Life goals, life narrative Retrospective evaluations Standard questionnaires and item banks Momentary QoL Experience sampling

Real life behavior, in context, at any time

Retrospective QoL may not be the same as momentary

Schneider & Stone.

Lesson 4 My beloved ones experienced their quality of life in congruence with their personality, in part irrespective of their actual health status (e.g., optimistic denial, angry rejection, serene acceptance)

We need to acknowledge that QoL is, in part, based on stable (personality) characteristics We may need to improve the conceptualisation of QoL by taking the stable (personality) characteristics into account

Trait (stable) - stable generalized beliefs and evaluations

Trait (stable) - stable generalized beliefs and evaluations State (momentary) - situation-specific experiences - context-dependent - likely fluctuate across a day or week

Overall meaning of QoL Life goals, life narrative Retrospective evaluations of QoL Standard questonnaires and item banks Momentary QoL Experience sampling

Lesson 5 Even in light of a lethal diagnosis we have experienced moments of intense happiness as well as moments of intense sadness Positive and negative affect are orthogonal (also supported by biological evidence)

For too long we have neglected positive aspects of QoL. We need to measure those standardly alongside negative aspects of QoL e.g., life satisfaction, happiness, pleasure

Stable QoL Momentary QoL

Stable QoL Negative Positive Momentary QoL

Stable QoL Distress Anxiety Symptoms Positive Momentary QoL

Stable QoL Distress Anxiety Symptoms Pleasure Happiness Intimacy Momentary QoL

Stable QoL Distress Anxiety Symptoms Pleasure Happiness Intimacy Daily rhythm Peak experience Activity-dependent

Stable QoL Distress Anxiety Symptoms Pleasure Intimacy Rest Daily pattern Peak experience Activity-dependent

Meaning of life Life goals Integration of life domains Distress Angst Depressie Pleasure Intimacy Rest Daily pattern Peak experience Activity-dependent

Lesson 6 I have witnessed unpredictable, horrendous side effects from medical treatment (i.e., angiogenesis inhibitors) Their unpredictability made it difficult to adapt

We need to learn more about the biological processes underlying experienced health and quality of life

Stable QoL Momentary QoL

http://geneqol-consortium.org/

QoL is anchored in our biology There is evidence of genetic involvement in multiple quality-of-life domains through a variety of biological pathways

Why should we address biological correlates of QoL? Scientifically: To investigate their effects on QoL To gain insight into the changeability of QoL (trait versus state)

Why should we address biological correlates of QoL? Scientifically: To investigate their effects on QoL To gain insight into the changeability of QoL (trait versus state) Clinically: To assess the range of possible intervention effects To ultimately improve health care, e.g., screening for QoL deficits based on biological markers?

Lesson 7 It required effort to adapt to health deterioration to maintain or restore our QoL

Health A state of complete physical, social, and mental well-being WHO, 1948

Health A state of complete physical, social, and mental well-being WHO, 1948 The ability to adapt and self-manage Huber et al., BMJ 2011

Health A state of complete physical, social, and mental well-being WHO, 1948 The ability to adapt and self-manage Huber et al., BMJ 2011 Response shift

Response shift becomes more relevant Response shift (Change in the meaning of self-reported QoL) Adaptation effects (desired) Controlling for time effects (bias)

Response shift > 2750 studies on response shift and QoL

Response shift > 2750 studies on response shift and QoL Generally, small effect sizes that can be clinically meaningful

Lesson 8 Knowledge of QoL in daily clinical practice is limited

More effort needs to be devoted to make the QoL data reported in the literature available to doctors and patients

More effort needs to be devoted to make the QoL data reported in the literature available to doctors and patients We need to express our data in a transparent way, useful for doctors

Which treatment arm leads to higher PRO?

233 clinicians: 32-39% incorrect 248 PRO researchers: 32-46% incorrect

233 clinicians: 32-39% incorrect 248 PRO researchers: 32-46% incorrect Choice for wrong treatment

More effort needs to be devoted to make the QoL data reported in the literature available to doctors and patients We need to express our data in a transparent way, useful for doctors We need to train doctors to convey QoL information

Lesson 9 Being treated according to protocol was a comfort as it reflects best practice Being treated as an individual patient requiring deviation from the protocol was enormously important

QoL research has matured into a discipline with sophisticated methods, protocols, and guidelines When dogmatically applied, they may limit the potential impact of QoL research We need to avoid rigor becoming rigidity

Strong research principle: Measures should be validated

Strong research principle: Measures should be validated Validation: Multi-dimensional and iterative process Need to improve the validity of measures via revisions A measure is only valid for a specific purpose in a specific sample

Validation studies often reveal limitations

Validation studies often reveal limitations Yet, we claim a measure to be valid (limitations fester in the discussion sections)

Validation studies often reveal limitations Yet, we claim a measure to be valid (limitations fester in the discussion sections) We use validity as if it were single and dichotomous (yes/no) instead of continuous (80% or 47%)

A common practice is to reference the original validation study to legitimize its use in other applications

A common practice is to reference the original validation study to legitimize its use in other applications This practice hinders further improvements

The ritual dance of validation

We need a more flexible validation practice paying credit to both rigor and adaptability Flexible rather than static questionnaires may ensure content validity, e.g.,: Different questions during follow-up than ontreatment (e.g, computer adaptive testing) A la carte approach to QoL measurement

Lesson 10 Knowledge of the QoL literature was a great source in helping me to cope The distance between researcher and patient narrowed

As we gain from QoL research, QoL research may gain from us

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. (Susan Sontag, Illness as Metaphor)

Researcher Patient

Researcher Respect, attitude, commitment, equality

Researcher Patient Advocate

Researcher Research training

Researcher Patient Research Partner

Researcher Representative of whom? Personal experience: generalizability?

Researcher Application to QoL Research

Better to refrain from the natural protective tendency to talk about them versus us Researchers need to actively keep their own experiences as patients and care givers in mind

Better to refrain from the natural protective tendency to talk about them versus us Researchers need to actively keep their own experiences as patients and care givers in mind Researchers need to be trained to be aware of those experiences and to use them to improve research New niche in patient engagement research?

Conclusion for QoL Research There are many challenges, but we have a bright future ahead

Conclusion for QoL Research Body-mind dichotomy will disappear

Conclusion for QoL Research Body-mind dichotomy will disappear Individualized medicine will increasingly be applied

Conclusion for QoL Research Body-mind dichotomy will disappear Individualized medicine will increasingly be applied There will be a more natural incorporation of the patient perspective

Embrace life as a precious but temporary gift m.a.sprangers@amc.uva.nl