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Patient-centred care in established rheumatoid arthritis
Best Practice & Research Clinical Rheumatology
Review of the evidence on patient-centred care (PCC) in rheumatoid arthritis (RA) shows that involving the patient as an individual – with unique needs, concerns and preferences – has a relevant impact on treatment outcomes (safety, effectiveness and costs). This approach empowers patients to take personal responsibility for their treatment.
Because clinicians are only able to interact personally with their patients just a few hours per year, patients with a chronic condition such as RA should be actively involved in the management of their disease. To stimulate this active role, five different PCC activities can be distinguished: (1) patient education, (2) patient involvement/shared decision-making, (3) patient empowerment/self-management, (4) involvement of family and friends and (5) physical and emotional support. This article reviews the existing knowledge on these five PCC activities in the context of established RA management, especially focused on opportunities to increase medication adherence in established RA.
Keywords: Rheumatoid arthritis, Patient-centred care, Self-management, Medication adherence, Patient empowerment, Patient education, Shared decision-making.
Patient-centred care in established rheumatoid arthritis
In line with rapid changes in our society, health care changes too. Fortunately, the efficacy, efficiency and effectiveness of treatments for chronic diseases more and more result in improvements in the quality of life and survival. Individuals increasingly prefer an active role in shaping their own lives, including how a chronic disease affects them. This process is catalysed by the rapid growth of the Internet, which offers convenient access to a wide range of health information, with interactive communication platforms
Shift from physician-centred care to patient-centred care
These developments are influencing today׳s health-care systems. For decades, health-care systems were mainly organised from the biomedical perspective. Consequently, the needs of the clinician and the system took priority in the delivery of care to patients. In this model, the health professional was at the centre of the system – he or she had exclusive access to knowledge – and the patient was expected to comply with the instructions given by health professionals
Respecting patient׳s autonomy is not only ethically ‘the right thing to do’, it is essential, as it is the patient who has to live with the daily discomforts, the challenges of RA and the threat of disability.
High-quality care is now considered to be a collaboration of professionals and patients jointly working on restoring or maintaining the patient׳s health status  and . Educated and empowered, patients will better manage their disease. Where professionals must stimulate and educate patients, they must feel obligated to work as partners with health professionals to optimise health (‘participatory medicine’).
In short, health care is changing from physician-centred care to patient-centred care (PCC), in which the health professional and the patient together decide what the best care will be
Patient as part of the multidisciplinary care team
PCC is defined by the Institute of Medicine (a division of the National Academy of Sciences in the United States) as: ‘providing care that is respectful of, and responsive to, individual patient preferences, needs, and values, ensuring that patient values guide all clinical decisions’
Bottom line; the underlying philosophy of PCC is the overall respect for patients as unique living beings in their specific social world, which implicates that patients should be treated as autonomous individuals who need to be viewed as full members of the multidisciplinary care team in order to assure that their wishes should be respected.
Patients need knowledge, skills and power
By definition of being the owner of their illness, RA patients typically cope with their illness on their own, in their own environment, most of the time in the absence of a clinician. Consequently, they need knowledge, skills, as well as power to be able to monitor and manage their symptoms on a daily basis, and to partner with health professionals in optimising their health [⁎1], , and  as follows:
- Patients need knowledge about the disease and symptoms, treatment options and possible outcomes and knowledge about personal values and preferences
- They need skills to self-manage their disease, and to participate in medical decision-making (e.g., health literacy, self-monitoring, self-management and decision-making skills)
- Finally, they need power to believe in their capacity to self-manage their disease, and to be able to influence the treatment decision-making (i.e., self-efficacy) [⁎1], , and . This includes factors such as believing that they have permission to participate and ask questions, having confidence in the value of own knowledge and ability to acquire medical knowledge, and self-efficacy to use self-management and decision-making skills.
Thus, besides knowledge and skills, the patients also have to be empowered to increase his/her self-efficacy, one of the main elements in Bandura׳s social cognitive theory
Therefore, in light of this theory, it is essential to stimulate the perceived self-efficacy of patients to make them valuable partners in their own care. Patients need to be explicitly invited by the health professional to participate
In this article, all examples to strengthen/stimulate PCC are based on knowledge, skills and power. These three elements are essential for the patient to be a valuable partner in his/her care process [⁎1], , and .
Evidence for effectiveness of PCC
Reviews on the effectiveness of PCC compared with more traditional health care show that the degree to which patients are more involved in their care has a significant impact on the quality of their treatment with regard to safety and effectiveness
PCC might also increase patient safety
PCC not only improves patient outcomes and satisfaction rate but might also improve patient safety. Although health care in general improves health of patients significantly, sizable numbers of patients are harmed each year because of medical errors
Barriers for PCC
Although it is widely advocated that PCC should be incorporated in usual care, there are also barriers, which slow down the uptake of PCC in clinical care. Firstly, although PCC seems logically and morally well founded, and the evidence to support PCC is growing, still more evidence is necessary to demonstrate the (cost-) effectiveness of PCC. Secondly, terminology can be a barrier in the implementation of PCC. PCC is a ‘container concept’ for multiple different elements that refer to different medical processes in the medical consultation. This makes PCC difficult to operationalise in implementable and measureable elements , , and . PCC also requires additional competencies from the health-care professional. Clinicians should be able to judge the extent to which patients would like to be involved, and/or would like to make a shared decision. Finally, time constraints are often reported to be an important barrier to PCC
Applying patient-centred care to improve medication adherence
As illustrated in this publication, patient-centred care (PCC) improves clinical quality and outcomes, and it might also decrease health-care costs. Besides, PCC might also decrease one of the underlying problems for poor health-care outcomes: medication adherence  and .
As in all chronic diseases, medication adherence is poor in patients with rheumatoid arthritis (RA). Although disease-modifying antirheumatic drugs (DMARDs) have proven to decrease the disease activity and radiological progression, adherence to DMARDs is not optimal and ranges from 22% (underuse) to 107% (overuse)
At the moment, however, there is limited research on adherence interventions in rheumatic diseases, and the published studies showed inconsistent effect on adherence or disease outcome
PCC to improve medication adherence
The principles of PCC are already embedded in the changes in terminology with respect to medication adherence. The oldest term to describe non-adherence was non-compliance. This term was intended to be a neutral alternative to earlier descriptions of patients who did not follow the clinician׳s advice, such as ‘untrustworthy’, ‘uncooperative’ or as proposed by Hippocrates, patients who lie about taking treatment. In short, compliance is a paternalistic conceptualisation of medication-taking behaviour, which disregards patients׳ perceptions on medication-taking
Unintentional and intentional non-adherence
Recently, two types of non-adherence have been conceptualized as ‘unintentional’ (e.g., forgetting medicines and miscommunication) and ‘intentional’. Unintentional non-adherence reflects a person׳s absence of ability and skills for taking medicines, including forgetting or poor manual dexterity, whereas intentional non-adherence is driven by a decision not to take medicines as prescribed , , and .
Factors associated with adherence
Knowledge of factors associated with medication adherence in RA could provide possible targets for (improved) adherence interventions, and it might also help to identify patients who would benefit from an intervention. However, non-adherent RA patients seem hard to characterize by its (socio)demographic-, therapy- and condition-related factors
Although (socio)demographic-, therapy- and condition-related factors are not well associated with medication adherence, patients seem to adhere better when the treatment regimen makes sense to them: when the treatment seems effective, when the benefits seem to exceed the risks/costs (both financial, emotional and physical) and when they feel they have the ability to succeed at the regimen (self-efficacious)
According to the Necessity-Concerns Framework of Horne and Weinman , , and , it is assumed that patient׳s decision to take medication is driven by a cost–benefit assessment. Herein, personal beliefs about the necessity of taking the medication for maintaining or improving health are balanced against concerns about the potential adverse effects of taking the medication , , and .
Many studies underline the importance of addressing these necessity beliefs and concerns about medication to improve adherence. In RA, several studies assessed associations between medication non-adherence and necessity and concern beliefs about medication (measured with the Beliefs about Medicines Questionnaire (BMQ)). Mostly, stronger necessity beliefs were associated with better medication adherence, whereas some studies suggest that stronger concern beliefs were associated with decreased medication adherence , , and .
Interventions to improve medication adherence should target these feelings. However, first, patients must feel safe to express their (non-)adherence, as this can be a delicate subject. The communication style must be open and non-judgemental, compliant to PCC and SDM. Motivational interviewing might be suitable to explore patients׳ medication needs, concerns and practical barriers. Then, patient׳s individual feelings about the necessity of the drug, patient׳s concerns and possible practical barriers can be explored. Possible barriers for adherence (not feeling the advantages of the medication, having concerns about the medication or experiencing practical barriers) can be explored with the patient (possibly using
At the moment, there are no published studies on the effectiveness of an e-health intervention on medication adherence in RA. Studies in other chronic conditions show promising results  and . However, the interventions are often complex, and the effect size is moderate. In case of forgetfulness, electronic reminders, especially SMS reminders, have been proven effective. Though long-term effects remain unclear, it seems logical that improving adherence can lead to optimised health outcomes
In fact, when a patient does not reach his/her treatment target, a rheumatologist should always consider whether the patient is a non-responder or a non-adherer. In order to detect non-adherent patients, a rheumatologist can use electronic devices to measure patient׳s adherence (relatively costly) or use a validated questionnaire (e.g., Compliance Questionnaire on Rheumatology). Besides, clinicians can always discuss with the patients whether he/she experiences practical barriers (problems with taking the medication and forgetting medication), has doubts about the necessity of the drugs and/or concerns about their medication.
Operationalisation of the concept of PCC
Multiple models and frameworks have been developed for describing PCC, with many overlapping elements , , and . This variety of frameworks leads to a heterogeneous use of the term PCC and measures to objectify PCC. Therefore, Scholl et al. have in 2014 synthesised the different dimensions of PCC, and they integrated these dimensions in a model
This model distinguishes four main principles of PCC:
- 1. The patient is a unique person (Each patient has his/her own needs, preferences, feelings, cognitions, expectations and skills).
- 2. Competent clinicians (Clinicians need specific competencies for PCC such as being respectful, empathic, tolerant, accountable and committed to the patient).
- 3. The clinician–patient relationship is the central component for PCC (Patients and physicians should have a partnership based on trust and mutual caring).
- 4. Biopsychosocial perspective (Understanding patient׳s illness within a broader framework by exploring the patient with his/her unique biological, psychological and social context).
Based on these four principles, five PCC activities can be distinguished.
- 1. Patient information/education
- 2. Patient involvement/shared decision-making
- 3. Patient empowerment/self-management
- 4. Family and friends׳ involvement
- 5. Physical and emotional support
In this article, these five PCC activities will be elucidated in more detail.
- (1) Patient information/education
Informing RA patients about the (consequences of the) disease and treatment options is a key element of providing health care. Especially, the uncertain disease progression, erratic course of exacerbations and remissions, the variable effects of rest, exercise and emotion, the management of often complex medication regimes, and the uncertainty of the prognosis and long term are essential items to be addressed. In addition, patients should be informed about how to access medical, psychosocial, physical and financial support
Recent studies have shown that RA patients have a high need for information, and that often these needs are not being met , , and . Patients state that information provision should not be limited to information about the disease and treatment but should also include emotional aspects and the impact on everyday life and focus on individual needs  and .
Physicians can only tailor information to the individual patient׳s needs, when patients are invited to share information (e.g., regarding symptoms and their impact on daily life, questions and concerns). With this mutual information exchange, the creation of the patient–clinician partnership begins. Possible questions to invite patients to share their thoughts are as follows:
- Which symptoms bother you most? Why?
- Can you tell me in your own words what you have understood and then, if necessary, I can help clarify
An example of integrating the view of the patients with regard to his/her condition is the application of PROs (Patient-Reported Outcomes), with disease-specific instruments as there is the RAID
The educational needs assessment tool (ENAT) can also support health professionals in assessing patient information needs. It is a self-completion questionnaire, which allows patients to prioritise their educational needs. The ENAT was developed by arthritis patients and their physicians, and it comprises the following domains: pain management, movement, feelings, arthritis process, treatments, self-help measures and support systems. It can be used to prepare a consultation in order to provide patient-centred and tailored education
Interventions developed in the last decade also try to acknowledge this need for tailored information; there is a trend towards a more holistic and tailored approach with a greater focus on behavioural, cognitive and emotional aspects
Low health literacy: a barrier to deliver information to patients
A barrier to PCC is low health literacy among patients , , and . Health literacy is ‘the degree to which individuals can obtain, process and understand the basic health information and services they need to make appropriate health decisions and function effectively in the health care environment’. In order to be able to accomplish this, a constellation of skills including the ability to interpret documents and read and write prose (printed literature), use quantitative information (numeracy) and speak and listen effectively (oral literacy) is required
In order to identify patients with low health literacy, various measurements are available such as the Rapid Estimate of Adult Literacy in Medicine (REALM)
Interventions for individuals with low health literacy are summarised by Sheridan and Haun  and . Several discrete design features of the health literacy interventions that improved patient comprehension were, for example, presenting essential information by itself or first, presenting information so that the higher number is better, presenting numerical information in tables rather than in text, adding icon arrays to numerical information and adding video to verbal narrative. Furthermore, improving health literacy by focusing on self-management reduced emergency department visits, hospitalisations and disease severity.
Patient information and e-health
Although patient information is often provided as verbal and written instructions and demonstrations, patient information may also be provided online. The increasing accessibility and availability of the Internet, social media and related computer technologies provide new opportunities for the communication and delivery of information. More and more RA patients search the Internet for a diagnosis or treatment before consulting their physician  and . In addition, also after consultation, patients search the Internet for confirmation, additional information and for information about the available treatment options  and . Patients state that they visit the Internet in order to be an active participant in their health care, and also to be a responsible informed patient
Recent research demonstrated that seeking medical information with common search engines and simple search terms is quite complex and not always efficient, despite the increased use of Internet. Although the accuracy of the information provided is generally good, high health literacy levels are required, and key information is poorly covered and inconsistent , , and . Many patients perceive that online health information is confusing, and they have difficulties with formulating proper search strategies and evaluating the relevance and reliability  and . Health-care organisations such as hospitals but also patient organisations could play a role in this by developing (online) tools that identify reliable and valuable information (i.e., carefully selected information). This information should be written on a level that is understandable for the majority of the population. Some arthritis foundations have reliable information online about treatments for RA, especially written for patients (e.g., www.reumafonds.nl and
Despite these emerging novel communication channels, only limited studies in rheumatology have focused on the use of these innovative information technologies. Rittberg, Dissanayake and Katz performed a qualitative analysis of publicly available methotrexate self-injection education videos on YouTube
Another method to provide information-using technology is to share audio recordings of the consultation with patients. Although studies regarding audio-recorded consultations have their focus in oncology and paediatrics, this technology can be a valuable innovation for rheumatology as well. A recent review noted that patients who received audio recordings have better information recall, clearer understanding and more active engagement in treatment decisions
- (2) Patient involvement/SDM
SDM is defined as a patient-centred approach in which the clinician and the patient go through all phases of the decision-making process together. Based on the best available evidence, the clinician informs the patient on all treatment options and their harms and benefits. The patient expresses his/her values and preferences regarding these options. Together, they come to an agreement on what the best way is to proceed for this individual patient  and .
The benefits of SDM
Patient involvement in decision-making is considered beneficial, because patients have the right to self-determination
The importance of SDM in rheumatology is confirmed by the 2013 European League against Rheumatism (EULAR) recommendations, which states that ‘treatment of RA patients must be based on a shared decision between the patient and the rheumatologist’
Implementation of SDM
Although desirable, implementing SDM in daily clinical practice is challenging for both doctors and patients. Previous studies with questionnaires report that 30–40% of adults with RA report suboptimal SDM communication with their clinician. Younger and more educated patients seem to be more likely involved in medical decision-making , , , and . In addition, patients with limited health literacy, limited language proficiency and lower trust in physician are associated with suboptimal SDM communication
For patients, it can be difficult to recognise that a decision needs to be made, and to actively participate in the process to come to an informed value-based decision , , and . They often have low confidence in their capacity to participate, a (perceived) lack of medical knowledge, are uncertain about which questions to ask and, above all, they perceive inequity in their relationship with their doctor.
Clinicians, on the other hand, may not desire or be comfortable with patient involvement due to a lack of time, self-efficacy and skills or due to indifference towards decision support tools , , and . Moreover, clinicians may overestimate their actual level of SDM
In daily clinical care, rheumatologists (and other team members) can facilitate SDM. As stated before, few patients are active participants by nature; most RA patients are not even aware of having a choice, and they are reluctant to participate due to a perceived power imbalance in the doctor–patient relationship. Therefore, the clinician, as an expert in complex medical decision-making and the one who is emotionally detached, should guide the decision-making process
This process can roughly be divided into three phases (
- 1. Firstly, the patient has to be informed that there is a decision to be made, what the options are and that the patient can have a role in the decision-making process (i.e., acknowledging the relevance of patient participation and supporting patients in becoming involved to increase their confidence/self-efficacy to fulfil that role). This might be the most important step to take. The patient needs to know that there is often no single best choice, that his/her preference is of relevance (e.g., for increased adherence) and that, if relevant, doing nothing or keeping the status quo is also an option  and .
- 2. The second phase is information exchange. This includes the clinician describing all treatment options, the clinical harms and benefits of these options, and the possible impact on daily life. In this stage, it is important to give patients time to process all the information. Furthermore, patients need support in assessing how the treatment may affect their daily life, and in developing and expressing preferences, values, expectations and worries about the treatment. In this phase of information exchange, patient decision aids (PtDAs) may be helpful (see subsequently).
- 3. Finally, when all relevant influencing factors are clear to all parties, the options can be deliberated, and a decision can jointly be made.
Exploring patient׳s role
During this decision-making process, the patient׳s preferred role should be explored. Research shows that most, but not all RA patients, want to participate. Most patients want to go through the full decision-making process with their physician, and others want to engage with the information but do not necessarily want to be involved in deliberation and decision-making , , , , , , , , , and . What makes it even more complex is that patient׳s preference for involvement may change over time, and it may vary according to the situation he/she is in
SDM also covers shared responsibility
Patient decision aids
To facilitate SDM, PtDAs can be implemented. In contrast to standard patient information materials, PtDAs state the decision to be made, and they help patients weigh the pros and cons of all relevant options. Furthermore, PtDAs help patients to clarify their values and preferences, and to prepare them for the SDM encounter. PtDAs come in many forms: on paper, video and/or (interactive) websites. They can be used before, during and in between clinical encounters – depending on the decision at stake and the patient׳s pathway. It is not yet clear which format is best. For a wide variety of treatment and screening decisions, PtDAs have repeatedly shown to have a positive impact on patients׳ knowledge about options, patients׳ risk perceptions and patients׳ feelings of being informed
Recently, a PtDA about RA medications, for use during the clinical encounter, was developed specifically for patients with limited health literacy
As stated before, PtDAs come in many forms, including (interactive) websites. Web-based PtDAs have the advantage of being easily adjustable, which is especially relevant in RA where new treatments evolve rapidly. Furthermore, on websites, the information can be provided in portions, adapting the amount and complexity of information to individual needs. In recent years, three studies on web-based PtDAs for RA have been reported , , and , all with a different focus. One PtDA used animated videos and a value-clarification exercise to support treatment decision-making in RA patients who were prescribed methotrexate, but were unsure about starting it
Fraenkel et al. recently developed a PtDA aimed to inform RA patients with ongoing active disease about the risks and benefits related to biologic therapy
All PtDA studies described earlier provide data that support the potential value of PtDAs in RA decision-making. All web-based PtDA studies report high acceptance rates; patients value the opportunity to process all the information at their own time and pace, as compared with during the medical encounter. However, the results should be interpreted as preliminary evidence – there is a need for clinical controlled trials to examine the impact of these tools in clinical practice.
Despite their promising effects, just implementing PtDAs is not enough to guarantee SDM to happen. Without a (natural) empathic doctor–patient interaction and evolvement into partnership, a successful SDM process will not occur.
- (3) Patient empowerment/self-management
In order to evolve from being a passive recipient of care to an active partner in health care, patients should develop knowledge, skills and power (see
This can be established in self-management programmes. The programmes give patients with RA strategies and tools to better cope with the disease. Although self-management is often linked to patient education, patient education offers only information, whereas self-management interventions are more problem focused, action oriented and emphasise patient-generated care plans
Self-management in RA
The first self-management interventions in RA were introduced in the 1980s with the implementation of the Arthritis Self-Management Program (ASMP)
Despite the potential effectiveness of self-management interventions, many patients have difficulty managing their chronic illness properly
Provision of self-management interventions
There are different types of self-management programmes, such as peer-led, lay-led and health professionals-led programmes, or a combination of these programmes. Most research with regard to self-management interventions evaluates group programmes delivered face to face, in contrast to the one-to-one approach by health professionals, which is the least evaluated delivery method.
Lay-led self-management programmes are becoming widespread in the attempt to promote self-care for people with chronic conditions. However, only small, short-term improvements in patients׳ self-efficacy, self-rated health, cognitive symptom management and frequency of exercise were published
New technologies, such as Internet-based interventions, have shown positive results in health status measures (health distress, activity limitation, self-reported global health and pain) and in self-efficacy for up to 1 year
Another possible viable solution is exploiting the potential of smartphone technology. Smartphone applications can be utilised without special training, often contain user-friendly visual graphics and voiceover animations. They can be provided in all languages with minor modifications to the intervention, and they are available at almost any place (including rural and remote areas) at any preferred time (so patients who work full time can also be reached). Nevertheless, the use of this technology is likely limited by age, gender and/or socio-economic levels, and its continuous utilisation may result in several problems, such as addictive use of the smartphone , [⁎133], and . Furthermore, the existing medical applications available in online application stores developed for rheumatic diseases were not evaluated in any step of application development or discussed in the medical literature so far, which results in lack of scientific evidence on the effectiveness of such interventions
- (4) Family and friends׳ involvement
Patients with RA must cope with pain, stiffness, physical activity restrictions and also the psychological impact of their disease on their lives. Many of these adaptive challenges require help from others. Thus, rheumatic disease patients need an available and satisfying network of interpersonal relations on which they can rely on for both emotional sustenance and practical support. However, a rheumatic disease also has an inevitable impact on the patient׳s family, social network and work. They also need to cope with disruptions in social life and work productivity.
Therefore, it is not only important to empower patients but to support families and other informal caregivers as well
Informal caregivers may carry a large share of care provision. Supporting their role, training, and protecting their well-being have led to positive outcomes for the health of carers and the people they care for , , , , , , , , , , , , , , , , [⁎133], , and . Informal caregivers can also be empowered by being invited to participate in meetings between the patient and the health professional. Furthermore, networks in local communities can empower informal caregivers (often families). Here, they have the opportunity to share knowledge, experiences and worries with other informal caregivers in terms of psychosocial support and training
Informal caregivers often involve family. Although patients rely most on close family members as support (strong ties), weaker ties (less intimate, more distanced contacts) appeared more durable and less liable to loss over time than stronger ties
- (5) Physical and emotional support
Besides informing, empowering and giving patients the right skills in order to participate in decision-making, PCC must also pay attention to patient׳s physical and emotional issues. The level of physical comfort that patients report has a tremendous impact on their experience of being ill
Physical and emotional support interventions aim to support patient׳s physical state (pain management, foot care), emotional state (fatigue, depression), patient׳s lifestyle (nutrition, exercise, smoking), social functioning (work and social network), but also patient׳s safety (adverse events reporting, clean medical facilities, transitional care) [⁎18] and .
Patient׳s physical and emotional status can also be improved by involvement in self-monitoring. In a British randomised clinical trial with 100 RA and psoriatic arthritis patients, patients received a training session where they were taught how to monitor their blood test results and when symptoms and side effects to report. In this study, the introduction of a self-monitoring programme resulted in half the number of appointments with the rheumatology nurse with no detrimental effects to their clinical status of the patient (pain, fatigue, erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), disease activity) and with no increase in visits to the rheumatologist or general practitioner (GP). Patients with RA and PsA demonstrated that they can successfully understand and interpret their blood test results, and use this information along with reports of their symptoms and side effects
PCC integrates the perspectives, understanding and preferences of patients into the delivery of health care. Essential for PCC is an effective clinician–patient partnership in which the clinician׳s recommendations are informed by an understanding of the individual patient׳s values, needs and life context (e.g., home life, job and family relationships). In addition, PCC takes into account the perspectives of the patient׳s family and other informal caregivers, when appropriate.
For the implementation of collaborative PCC, patients need knowledge (about treatment options available and of personal preferences and goals), skills (such as interventions to overcome low health literacy) and power (e.g., the believed ability to use this knowledge to influence decision-making in the encounter with the doctor). Patients will benefit when they are involved in their care, both at home and in clinical settings. Health information materials, PtDAs, self-management action plans and other ‘technologies’ to stimulate patient engagement are most effective when they supplement or augment, rather than replace, interactions between patients and professionals
PCC requires time and often a change in the mindset of both professionals and patients. Patient-centredness was associated with better outcomes and higher cost
For successful implementation, Scholl et al. describe five enablers
- Clinician–patient communication (adequate competencies for patient-centred communication)
- Integration of medical and non-medical care (recognition and integration of non-medical aspects of care in health-care services)
- Teamwork and team building (importance of interdisciplinary and multiskilled teams)
- Access to care (timely access to conveniently accessible care)
- Consideration and continuity of care (coordinated continuity of care)
Once implemented, it is expected that PCC may help improve the quality and safety of care, and it may ascertain an affordable health-care system for the next generations.
In the Netherlands, a web portal was designed, which not only offers information on rheumatic diseases, treatments, available aids and support but also contains a personal secure login section, where patients can find their diagnosis, current medication and medication history, blood results, actual and previous disease activity, and outcomes on the quality of life-related instruments. All data are accompanied by written information and (where possible) charts and graphs to show the fluctuation in scores along a timeline using colours to compare the data to norm scores (
Patients who were using this portal reported that they felt more involved in their treatment, and they had more knowledge about their treatment. One patient reported ‘It would mean more involvement in myself. It concerns information about me, so I would like that very much (insight in electronical medical records)’ (male, 59 years, RA)  and .
Researchers and clinicians from Canada developed a PtDA called the Animated, Self-serve, Web-based Research tool (ANSWER) for patients considering methotrexate for RA (
- Patient education should not only be focused on general information about the disease and treatment but should also be more tailored to patient׳s individual needs. An education needs assessment tool can facilitate the exploration of patient׳s information needs.
- Although shared decision-making (SDM) is considered beneficial and is recommended by the EULAR, the implementation of SDM in clinical practice is suboptimal. Clinicians should guide the patient in the decision-making process as few patients are active participants by nature. This process can be facilitated with patient decision aids.
- Many RA patients have difficulty to manage their chronic illness properly. New technologies, such as Internet and mobile phones, seem to be promising tools to improve patient׳s self-management.
- Rheumatic disease patients need an available and satisfying network for emotional and practical support. Interventions to involve patient׳s family and friends are therefore essential.
- Health information materials should supplement, rather than replace interactions between patients and clinicians.
- For the optimal implementation of PCC, patients need knowledge (e.g., about disease, treatment options, personal values and preferences), skills to manage their disease and to participate in medical decision-making and finally power to believe in their capacity to self-manage their disease.
- There is no evidence for a negative impact of PCC on the length of consultation or increase in health-care costs.
- Future research on PCC is essential to further develop, optimise and evaluate PCC. Aspects that should be covered are as follows:
- ○ Research focusing on the methodological aspects of PCC research aiming to standardise outcome measures and develop/validate instruments to assess these outcome measures
- ○ Research focusing on the (cost-) effectiveness of PCC interventions
- ○ Research that identifies optimal interventions to improve patient-centred care
- ○ Research that identifies specific populations and contextual considerations that would benefit most from a greater degree of PCC
- ○ Research on the implementation of PCC in clinical practice, including the education of health-care professionals on this topic
Conflicts of interest
All authors herewith declare that we have nothing to disclose.
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a University of Twente, Enschede, The Netherlands
b Medisch Spectrum Twente, Enschede, The Netherlands
c Department of Pharmacy, Sint Maartenskliniek, Nijmegen, The Netherlands
d Department of Pharmacy, Radboud University Medical Center, Nijmegen, The Netherlands
Corresponding author. Sint Maartenskliniek, Department of Pharmacy, PO Box 9011, 6500 GM, Nijmegen, The Netherlands. Tel.: + 31 24 365 9061; fax: +31 24 365 9827.
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