Review article
Patient autonomy in multiple sclerosis — Possible goals and assessment strategies

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Abstract

Patient autonomy has been increasingly acknowledged as prerequisite for successful medical decision making in Western countries. In medical decisions with a need to involve a health professional, patient autonomy becomes apparent in the extent of patients' participation in the communication as described in the concept of shared decision making. Patient autonomy can be derived from different perspectives or goals and the focus of evaluation approaches may vary accordingly. Multiple sclerosis (MS) is a paradigmatic disease to study patient autonomy mainly because MS patients are highly disease competent and due to ambiguous evidence on many aspects of disease-related medical decision making.

This review gives an overview on measurement issues in studying decision making in MS, categorized according to prerequisites, process measures and outcomes of patient autonomy. As relevant prerequisites role preferences, risk attribution, risk tolerance, and risk knowledge are discussed. Regarding processes, we distinguish intra-psychic and interpersonal aspects. Intra-psychic processes are elucidated using the theory of planned behavior, which guided development of a 30-item scale to capture decisions about immunotherapy. Moreover, a theory of uncertainty management has been created resulting in the development of a corresponding measurement concept. Interpersonal processes evolving between physician and patient can be thoroughly analyzed from different perspectives by use of the newly developed comprehensive MAPPIN'SDM inventory. Concerning outcomes, besides health related outcomes, we discuss match of preferred roles during the decision encounters (preference match), decisional conflict as well as an application of the multidimensional measure of informed choice to decisions of MS patients.

These approaches provide an overview on patient-inherent and interpersonal factors and processes modulating medical decision making and health behavior in MS and beyond.

Introduction

In a broader definition, patient autonomy (PA) in the medical context describes patients making use of their right of self-determination when dealing with a health matter. PA refers to patients' self-perception, perceptions by others as well as behavior in the fields of information seeking and perception, care, treatment, and medical decision making. Applied to the field of medical decision making, PA in Western countries is increasingly considered necessary. In medical decisions with a need to involve a health expert PA becomes apparent in the patients' participation in communication as described in the concept of shared decision making [1].

PA has been advocated for different reasons: First, for ethical reasons it is axiomatic to put every effort in supporting individuals' freedom of will as included in the guideline of the British General Medical Council (GMC) [2]. These guidelines also claim that there is a responsibility of patients to inform themselves before decisions are made.

Second, as making best use of scientific evidence for the individual patient is only possible when patient values are considered, PA is considered an essential part of evidence based medicine (EBM) [3]. In particular, patients' preferences should guide the choice, if the evidence does not clearly imply a first choice – which is called an equipoise condition – or even regularly if more than one option is available. Third, patients' autonomous participation in their health management might improve health outcomes due to a better fit of health decisions with individual needs. In fact, the evidence in this respect is ambiguous [4].

There are also possible misconceptions. In cases difficult to decide on, PA might be misused by health professionals as a possible strategy to avoid responsibility or as an efficient strategy to achieve higher compliance/adherence of patients who are given the impression of autonomy. Also PA might give the impression of the health system as a “health shopping center”, reducing health management and patient–physician relationship to an economic interaction.

All the more, most of these aspects are also relevant to the field of medical practice, training and research in multiple sclerosis. More and more partially effective costly treatments, some of them with considerable side-effects, are available [5]. So e.g. if to continue natalizumab treatment for more than two years when JC virus antibodies in serum are positive is a highly preference sensitive decision. Furthermore, recent studies have shown adherence rates of no more than 50% for first-line treatments [6]. The example of the recent discussion on venous "liberation" and the pressure of patient groups to gain access to this procedure also show possible misconceptions of PA [7]. Do these complexities call for more rigorous patient guidance especially in a disease which affects cognition and reasoning?

To account for this situation, the debate on the need for enhanced patient participation in this kind of complex medical decisions and on appropriate strategies to support patient autonomy should be held based on more clarity regarding the question for the goals of PA. Furthermore, the goals of PA should drive its evaluation: Is PA fulfilling an ethical postulate? Should it make the health system more efficient? Or result in better health outcomes?

It is unclear whether patient autonomy in treatment decisions should necessarily lead to an improvement of other “traditional” patient-relevant outcomes (e.g. mortality, morbidity, quality of life) or if involvement is a normative necessity and therefore a patient-important outcome on its own. An ethical justification of PA would therefore imply focusing the process of decision making. The evaluative focus lies in clarifying to what extent patients' decisions have been made autonomously, or to what extent patients were involved in their medical decisions. If PA is intended to act as a strategy to reach certain outcomes, any evaluation has to relate the extent of patient participation in the decision making process to these specific outcomes such as knowledge, compliance, realistic expectations, health status, disease management competences, or quality of life. Independent of the underpinning goal, PA needs evaluation regarding its basic, prerequisites and facilitating factors.

When our work on PA in MS was started in 2001, evidence was rare for general validity of instruments assessing doctor patient communication and efficacy of patient involvement interventions. As well, relevance of PA in MS had not been the subject of systematic research. Therefore, a considerable part of our work intended to yield a better understanding of the nature of medical decisions, communication processes, context and background. Furthermore, we conducted studies, where our evaluative approaches were applied in efficacy trials of interventions supporting MS-patients' medical decision making.

This review paper provides an overview of measurement issues and achievements at three defined time-points in a decision making process as has recently been proposed by Scholl et al. [8].

First we report on attempts to capture contexts, requirements or decision prerequisites building the ground upon which decision making processes unfold. Second we provide insight into approaches focusing the process of medical decisions including both, the internal (cognitive–emotional) and the communicative elaboration of a medical decision. Third, methods are described trying to differentiate medical decisions in terms of patient involvement on the level of outcomes. Outcomes can be defined on different complexity levels most simply as the distribution of choices or more complex in terms of psychological concepts as satisfaction and regret or even health state (Table 1).

Section snippets

Prerequisites

The specific process a person unfolds when facing a (medical) decision of pronounced importance is driven by a complex interaction of the person's cognitive styles, personality traits, cognitive and social competencies with the specific disease related and environmental context. These factors contribute to shaping of individual health belief models and coping styles. While unable to yield comprehensive assessment of all or even most of the factors which seemed relevant to us as prerequisites of

Process of the decision

Depending on the point of view, the elaboration of a medical decision can be conceived either internally on a cognitive emotional level as well as interpersonally on the level of communication. Using the corresponding concepts from social and cognitive psychology and communication science, we applied both viewpoints in our evaluation of MS decision making.

Health status & utilization of health resources

As outlined above very few interventions on PA or on patient involvement have been shown to really affect patients' health status [4]. In fact, health care utilization might be another straight-forward robust outcome parameter. In our first RCT [20] we have shown that provision of comprehensive EBPI and participation in a 4-hour educational program alters patients' disease management. During two years of follow-up, patients in the intervention group had significantly fewer relapses and there

Discussion

Patient autonomy has been stressed as the ideal concept for medical decision making. MS represents an prototypical condition for this approach as the disease affects young, highly competent people on the one hand and as on the other hand treatments are only partially effective some of them with considerable side effects. In recent years we have studied prerequisites for patient autonomy in MS treatment decision making along with different interventions to modulate decision making processes.

Conclusion

In conclusion we have developed a battery of tools to analyze different steps in decision making processes in MS and other diseases in order to clarify important factors modulated through SDM and EBPI interventions. In addition these tools may help to benchmark knowledge and compare elaboration of decisions in different health care settings or different countries and cultures.

Funding

This work has been done with support of the German Ministery of Health, a Rehabliation Fellowship from the National MS Society of the US, the "Verein zur Förderung der Rehabilitationsforschung" and Merck-Serono Pharma. The AutoMS was funded by the Fondazione Italiana Sclerosi Multipla (FISM) and the Gemeinnützige Hertiestiftung.

Conflict of interest

CH has received grants from Biogen-Idec, Merck-Serono, Novartis Pharma and Teva Pharma as well as speaker's fees. AS has received a board membership fee from Novartis and speaker's fees from Sanofi-Aventis. JK has received travel expenses from Merck Serono. FG has no conflict of interest.

Acknowledgments

We thank all patients and physicians who participated in our research summarized in this review.

References (66)

  • D. Simon et al.

    Development and first validation of the shared decision-making questionnaire (SDMQ)

    Patient Educ Couns

    (2006)
  • F. Geiger et al.

    Of blind men and the elephant: introducing a compound measure for shared decision making integrating patient's, physician's and observer's view

    Z Evid Fortbild Qual Gesundh wesen

    (2012)
  • J. Ogden et al.

    Doctors expressions of uncertainty and patient confidence

    Patient Educ Couns

    (2002)
  • D.J. Kiesler et al.

    Optimal matches of patient preferences for information, decision-making and interpersonal behaviour: evidence, models and interventions

    Patient Educ Couns

    (2006)
  • F. Légaré et al.

    The decisional conflict scale: moving from the individual to the dyad level

    Z Evid Fortbild Qual Gesundh wesen

    (2012)
  • C. Heesen et al.

    Decisions on multiple sclerosis immunotherapy: new treatment complexities urge patient engagement

    J Neurol Sci

    (2011)
  • GMC

    Consent: Patients and Doctors Making Decisions Together

    (2008)
  • A. Barrat

    Evidence based medicine and shared decision making: the challenge of getting both evidence and preferences into health care

    Patient Educ Couns

    (2008)
  • A.M. O'Connor et al.

    Decision aids for people facing health treatment or screening decisions

    Cochrane Database Syst Rev

    (2009)
  • J.M. Bruce et al.

    Multiple sclerosis: MS treatment adherence—how to keep patients on medication?

    Nat Rev Neurol

    (2011)
  • R. Rogers

    A protection motivation theory of fear appeals and attitude change

    J Psychol

    (1975)
  • S. Munro et al.

    A review of health behavior theories: how useful are these for developing interventions to promote long-term medication adherence for TB and HIV/AIDS?

    BMC Public Health

    (2007)
  • R. Schwarzer

    Selbstwirksamkeitserwartung [Self-efficacy]

  • A. Lohaus et al.

    KKG Questionnaire

    (1989)
  • C. Heesen et al.

    Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists

    Mult Scler

    (2010)
  • D.T. Miller et al.

    Self-serving biases in the attribution of causality: fact or fiction?

    Psychol Bull

    (1975)
  • J. Kasper et al.

    Why not? — Communicating stochastic information by use of unsorted frequency pictograms — randomised controlled trial

    Psychosoc Med

    (2011)
  • Janssens C. Perception of Prognostic Risk in Multiple Sclerosis [thesis]. Rotterdam: Erasmus University; 2003....
  • G. Gigerenzer et al.

    Helping doctors and patients make sense of health statistics

    Psychol. Sci. Publ. Interest

    (2007)
  • J. Kasper et al.

    Informed shared decision making about immunotherapy for patients with multiple sclerosis (ISDIMS): a randomised controlled trial

    Eur J Neurol

    (2008)
  • S. Köpke et al.

    Patient education programme to enhance decision autonomy in mutiple sclerosis relapse management: a randomised controlled trial

    Mult Scler

    (2008)
  • C. Heesen et al.

    Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis

    Mult Scler

    (2004)
  • A. Giordano et al.

    The Multiple Sclerosis Knowledge Questionnaire: a self-administered instrument for recently diagnosed patients

    Mult Scler

    (2010)
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