Taking into Account Patient Preferences: A Consensus Study on the Assessment of Psychological Dimensions Within Patient Preference Studies

Figures & data

Table 1 List and Definition of Psychological Constructs Identified by the Systematic Literature Review from Russo et al¹³ and the Panel of Experts. They are Reported in Alphabetic Order

Construct	Description of Construct
Anxiety	A distinction between state and trait anxiety has become commonplace.^Citation14,Citation15 State anxiety is defined as an unpleasant emotional arousal in face of threatening demands or dangers. A cognitive appraisal of threat is a prerequisite for the experience of this emotion.^Citation16 Trait anxiety, on the other hand, reflects the existence of stable individual differences in the tendency to respond with state anxiety in the anticipation of threatening situations.
Assertiveness	Assertiveness is a proactive response in difficult situations to contrast with passive or aggressive reactions.^Citation17
Autonomy preference	Autonomy is self-governance over decisions; a decision or choice of action is considered autonomous if it comes from within and is free from external control or influence.^Citation18,Citation19 Thus, autonomy preference reflects patient’s preference for self-governance in medical care.
Behavioural inhibition and activation	Behavioural inhibition system and the behavioural approach system are two general motivational systems that underlie behaviour. The behavioural approach system is believed to regulate appetitive motives, in which the goal is to move toward objectives and something desired. A behavioural avoidance (or inhibition) system is said to regulate aversive motives, in which the goal is to move away from something unpleasant.^Citation20
Conservatism	Conservatism is defined as the disposition to preserve tradition and established institutions and resist and oppose to change.^Citation21
Control preference	Control preference reflects patient’s preferred level of their own versus their physician’s control or a collaborative role over a treatment decision.^Citation22
Coping style	Coping style is defined as the habitual pattern of individuals when reacting to stress either across different situations or over time.^Citation23
Decision-making styles	Decision-making style is the habitual pattern individuals use in decision-making, or characteristic mode of perceiving and responding to decision-making tasks.^Citation24,Citation25
Depression	Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behaviour, feelings, and sense of well-being.^Citation26
Dispositional optimism	Dispositional optimism is defined as generalized expectancy for positive future events.^Citation27
Health anxiety	Health anxiety is defined as a worry about physical health and can range from mild concern to severe or persistent anxiety such as that found in hypochondriasis.^Citation26
Health literacy	Health literacy is the patient’s ability to read, understand and use healthcare information appropriately.^Citation28
Health locus of control	Health locus of control is defined as a generalized expectation about whether one’s health is controlled by one’s own behaviour or forces external to oneself.^Citation29 An individual with an internal locus of control believes that outcomes are a direct result of his or her own behaviour. An individual with an external locus of control believes that outcomes are a result of either chance or powerful other people, such as physicians.
Health numeracy	Health numeracy refers to the patient’s ability to apply and manipulate numerical concepts in the healthcare context.^Citation30,Citation31
Health orientation	Health orientation is an individual-differences concept defined as an individual’s motivation to engage in healthy attitudes, beliefs, and behaviours.^Citation32
Illness perception	Illness perception is defined as patients’ own implicit and common-sense beliefs about their illness.^Citation33
Mastery	Mastery motivation has been defined as a psychological force that stimulates an individual to attempt independently, in a focused and persistent manner, to solve a problem or master a skill or task which is at least moderately challenging for him or her.^Citation34
Mood states	In contrast to emotion mood is defined as a transient, low-intensity, nonspecific, and subtle affective state that often has no definite cause.^Citation35
Need for closure	The need for cognitive closure is conceptualized as a cognitive-motivational factor that underlies how laypersons approach and form their knowledge about the social world.^Citation36 Need for closure varies along a continuum with one end representing a need to attain cognitive closure and the other end representing a need to avoid cognitive closure. People with high need for closure can be described as having a preference for quick decision-making, predictability, structure, and low tolerance for ambiguity. Individuals with a low need for closure prefer variety, flexibility, uncertainty, and slow decision-making.
Need for cognition	Need for cognition refers to peoples “tendency to engage in and enjoy effortful cognitive endeavors.”^Citation37 Individuals with a high need for cognition enjoy the thinking process, are motivated to apply their thinking skills and are more likely to be able to process and systematize information.^Citation38
Patient Activation	Patient activation refers to the degree to which an individual has knowledge, motivation, skills, and confidence to make effective health-related decisions.^Citation39
Personality	Personality is the dynamic organisation within the individual of those psychophysical systems that determine his characteristic behaviour and thought.^Citation40
Psychological well-being	Psychological well-being is defined as a combination of several aspects of positive psychological functioning, which includes self-acceptance, positive relations with others, autonomy, environmental mastery, purpose in life, and personal growth.^Citation41
Rational and experiential thinking styles	Rational and experiential thinking styles are habitual pattern of information processing.^Citation42 While the rational style emphasizes a conscious and analytical approach, the experiential style emphasizes a pre-conscious and a more affective approach.
Resilience	Resilience is defined as the process of adapting well in facing traumas, adversities, threats, tragedies, and sources of stress.^Citation43
Risk propensity	Risk propensity is described as a function of the person’s perception of risk and the person’s willingness to take on this risk.^Citation44
Self-efficacy	Self-efficacy is an individual’s belief in his or her capacity to master the cognitive, motivational, and behavioural resources required to perform a specific action in a given situation.^Citation45
Sensation Seeking	Sensation seeking is defined as the seeking of various, novel, complex, and intense sensations and experiences, and the willingness to take physical, social, legal, and financial risks for the sake of such experience.^Citation46
Sense of coherence	The sense of coherence is a construct that refers to the extent to which one sees one’s world as comprehensible, manageable, and meaningful.^Citation47
Social support	Social support is defined as a “social network’s provision of psychological and material resources intended to benefit an individual’s ability to cope with stress”.^Citation48
Treatment-related beliefs	Treatment-related beliefs are defined as the specific patient’s perception of the need to take medication and concerns about it as well as the general beliefs about pharmacotherapy.^Citation49

Note: Psychological constructs proposed by experts which supplement the list of the systematic review from Russo et al¹³ are indicated in bold.

Table 2 List of Identified Psychological Constructs Organised by Strength of Available Empirical Evidence (Alphabetically Ordered Within Each Class)

	Constructs
Group A	Health literacy
	Health locus of control
	Health numeracy
Group B	Assertiveness
	Autonomy preference
	Conservatism
	Control preference
	Coping style
	Decision-making style
	Dispositional optimism
	Health orientation
	Patient activation
	Resilience
	Risk propensity
	Self-efficacy
	Treatment-related beliefs
Group C	Anxiety
	Behavioural inhibition and activation
	Depression
	Health anxiety
	Illness perception
	Mastery
	Mood states
	Need for closure
	Need for cognition
	Personality
	Psychological well-being
	Rational and experiential thinking styles
	Sensation seeking
	Sense of coherence
	Social-support

Figure 1 Item asking participants’ understanding of the relations between heterogeneity differences and misunderstanding differences in patient preference studies. Note: (A) Hetereogeneity differences as subset of misunderstanding differences; (B) misunderstanding differences as subset of heterogeneity differences; (C) misunderstading and heterogeneity differences completley overlap; (D) misunderstanding and heterogeneity differences are completely distinct; (E) misunderstading and heterogeneity differences partially overlap.

Table 3 Delphi Panel Sociodemographic and Professional Characteristics

Characteristics	n= 27
Gender, n (%) female	16 (59.3%)
Age years, mean (SD)	41.19 (±9.77)
Field of expertise, n (%)^a
Health psychology	11 (40.7%)
Clinical psychology	4 (14.8%)
Risk communication	6 (22.2%)
Medical decision-making	8 (29.6%)
Decision-making (non-medical)	8 (29.6%)
Public health	7 (25.9%)
Other fields	6 (22.2%)
Work sector, n (%)
Academic sector	20 (74.1%)
Government	1 (3.7%)
Industry	4 (14.8%)
Other	2 (7.4%)
Years of expertise, mean (SD)	13.48 (±9.77)
Expertise level in patient preference study (from 1 “not at all expert” to 5 “to a large extent expert”)	3.04 (±1.43)
Country of work, n (%)
European Union	11 (40.8%)
North America	9 (33.3%)
United Kingdom	4 (14.8%)
Asia	1 (3.70%)
Australia	1 (3.70%)
Switzerland	1 (3.70%)

Note: ^aPercentages sum up to more than 100, as more than one option could be selected.

Table 4 Consensus-Based Recommendations at the Two Rounds of the Delphi Method

Psychological Construct	1st Round (% Agree and Agree Strongly)	2nd Round (% Agree and Agree Strongly)	Group of the Empirical Evidence Available	Class of Recommendation
Anxiety	44.4%	37.0%	C	III
Assertiveness	33.3%	22.2%	B	III
Autonomy preference	59.3%	74.1%^a	B	II
Behavioural inhibition and activation	25.9%	18.5%	C	III
Conservatism	33.3%	14.8%	B	III
Control preference	70.4%^a	85.2%^b	B	I
Coping style	48.1%	48.1%	B	III
Decision-making style	59.3%	70.4%^a	B	II
Depression	44.4%	51.9%	C	III
Dispositional optimism	40.7%	33.3%	B	III
Health anxiety	55.6%	59.3%	C	III
Health literacy	85.2%^b	96.3%^b	A	I
Health locus of control	70.4%^a	85.2%^b	A	I
Health numeracy	81.5%^b	92.6%^b	A	I
Health orientation	70.4%	74.1%^a	B	II
Illness perception	70.4%^b	92.6%^b	C	I
Mastery	33.3%	25.9%	C	III
Mood states	22.2%	11.1%	C	III
Need for closure	37.0%	25.9%	C	III
Need for cognition	37.0%	33.3%	C	III
Patient activation	70.4%^a	85.2%^b	B	I
Personality	37.0%	29.6%	C	III
Psychological well-being	59.3%	55.6%	C	III
Rational and experiential thinking styles	48.1%	33.3%	C	III
Resilience	44.4%	33.3%	B	III
Risk propensity	77.8%^b	88.9%^b	B	I
Self-efficacy	55.9%	63.0%	B	III
Sensation seeking	25.9%	14.8%	C	III
Sense of coherence	29.6%	11.1%	C	III
Social support	59.3%	55.6%	C	III
Treatment-related beliefs	74.1%^a	92.6%^b	B	I

Notes: ^aHighlighted majority; ^bhighlighted consensus.

Table 5 Percentages of Selection of the Class I and Class II Psychological Constructs as Relevant Information to Account for PP Heterogeneity or Misunderstanding Differences in PPs

Constructs	Account for PP Heterogeneity (%)	Account for Misunderstanding Differences in PPs (%)
Autonomy preference	59.3%	14.8%
Control preference	51.9%	22.2%
Decision-making style	37.0%	29.6%
Health literacy	44.4%	85.2%
Health locus of control	59.3%	25.9%
Health numeracy	37.0%	81.5%
Health orientation	33.3%	11.1%
Illness perception	55.6%	29.6%
Patient activation	29.2%	22.2%
Risk propensity	51.9%%	14.8%
Treatment-related beliefs	55.6%	37.0%

Table 6 Brief Checklist for the Evaluation and Selection of Available Measures to Assess Psychological Constructs

Criteria	Recommendations
1. Is the instrument valid and reliable?	It could be recommended to use in a PP study only psychological measures with consistently proven reliability and validity in the specific population under investigation.
2. Is the instrument available in the language the patient preference study will be conducted?	The use of psychological instruments specifically developed or properly adapted to the language and culture of the target population for the PP study is recommended.
3. Is this instrument designed for a particular population of patients or a specific disease?	Psychological instruments developed specifically for the population being targeted by the PP study should be preferred to other tools.
4. What is the outcome measure of the instrument?	Psychological measures with standardized and norm-referenced scores should be preferred over instruments with only raw scores.
5. Does the instrument provide cut-offs classifying patients?	If relevant, psychological measures providing cut-off scores are preferred over instruments with only raw or standardized scores.
6. Is the instrument protected by copyright/license?	When budget constraints do not allow the use of psychological instruments with fees, researchers might consider alternative measures with equivalent characteristics but not requiring payment.
7. What is the average cognitive burden and time commitment for respondents completing the instrument?	Required time for completion and associated patient-reported respondent burden should be investigated through pretesting and piloting studies. When available psychological instruments are deemed to be equivalent in their informative values, the less cognitively burdensome and time-consuming tool should be preferred over more cognitively and time-demanding ones.

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