Ervaringen met kanker: Reflecties op onderzoek naar kwaliteit van leven

Transcription

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

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

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

4 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

5 Personal History ( ) Koosje Sprangers-Rave

6 Personal History ( ) Theo Jonkergouw

7 Loes Rave Personal History (2012)

8 Personal History (2012) Loes Rave Rie Onderwater

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

10 Personal History (2013)

11 Personal History (2013)

12 Personal History (2013)

13 Personal History ( )

14 Personal History ( )

15 Personal History (2014-date)

16 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

17 Retrospective evaluations of QoL Standard questionnaires and item banks

18 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

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

20 Falling ill: contingent life event biographical disruption

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

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

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

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25 RE-LIFE Reconstruction of Life Events Questionnaire

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

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

28 Real life behavior, in context, at any time

29 Retrospective QoL may not be the same as momentary

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31 Schneider & Stone.

32 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)

33 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

34 Trait (stable) - stable generalized beliefs and evaluations

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

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

37 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)

38 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

39 Stable QoL Momentary QoL

40 Stable QoL Negative Positive Momentary QoL

41 Stable QoL Negative Positive Momentary QoL

42 Stable QoL Distress Anxiety Symptoms Positive Momentary QoL

43 Stable QoL Distress Anxiety Symptoms Positive Momentary QoL

44 Stable QoL Distress Anxiety Symptoms Pleasure Happiness Intimacy Momentary QoL

45 Stable QoL Distress Anxiety Symptoms Pleasure Happiness Intimacy Momentary QoL

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

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

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

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

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

51 Stable QoL Momentary QoL

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

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56 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)

57 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?

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

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

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

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

62 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

63 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

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

65 Response shift > 2750 studies on response shift and QoL

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

68 Lesson 8 Knowledge of QoL in daily clinical practice is limited

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

70 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

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72 Which treatment arm leads to higher PRO?

73 233 clinicians: 32-39% incorrect 248 PRO researchers: 32-46% incorrect

74 233 clinicians: 32-39% incorrect 248 PRO researchers: 32-46% incorrect Choice for wrong treatment

75 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

76 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 We need more data from cohort studies

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78 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

79 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

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81 Strong research principle: Measures should be validated

82 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

83 Validation studies often reveal limitations

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

85 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%)

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

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

88 The ritual dance of validation

89 The ritual dance of validation

90 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

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

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

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

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95 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)

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97 Researcher Patient

98 Researcher Respect, attitude, commitment, equality

99 Researcher Patient Advocate

100 Researcher Research training

101 Researcher Patient Research Partner

102 Researcher Representative of whom? Personal experience: generalizability?

103 Researcher Application to QoL Research

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105 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

106 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?

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

108 Conclusion for QoL Research Body-mind dichotomy will disappear

109 Conclusion for QoL Research Body-mind dichotomy will disappear

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

111 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

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