Operationalisation of the concept of PCC

Multiple models and frameworks have been developed for describing PCC, with many overlapping elements . 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 describes the four main principles of PCC as essential prerequisite activities and essential enablers to implement PCC in daily clinical care. The main principles and activities are the focus of this article, and they are depicted in Fig. 2 .

Principles and activities of patient-centredness (adapted from Scholl ).

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

Recent studies have shown that RA patients have a high need for information, and that often these needs are not being met . 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 .

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 (rheumatoid arthritis impact of disease) or generic instruments such as the short-form (SF)36 . Online communication between patients and professionals is gaining popularity, and it helps to overcome a barrier to be able to reach the specialist at certain times .

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 . The ENAT can be obtained from the website http://www.leeds.ac.uk/acumen/pages/research/ENAT.html .

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 . In addition, information provision is more directly linked to educate skills to patients that enable them to monitor and manage their symptoms on a daily basis, that is, it is more integrated in self-management interventions and interventions to support SDM. This fits within the approach of PCC.

Low health literacy: a barrier to deliver information to patients

A barrier to PCC is low health literacy among patients . 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 . Low health literacy is a significant problem, and it has been linked to poorer health outcomes and medical costs .

In order to identify patients with low health literacy, various measurements are available such as the Rapid Estimate of Adult Literacy in Medicine (REALM) , the Test of Functional Health Literacy in Adults (TOFLA) , the Newest Vital Sign , the functional, communicative and critical health literacy scales assessment by Ishikawa et al. and the Health Literacy Skills Instrument by McCormack . An easy-to-administer self-assessment instrument that combines the measurement of computer skills with health literacy skills is the eHealth Literacy Scale (eHEALS) by Norman and Skinner .

Interventions for individuals with low health literacy are summarised by Sheridan and Haun . 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 . In addition, also after consultation, patients search the Internet for confirmation, additional information and for information about the available treatment options . 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 . However, patients are hesitant to discuss their search for information with their rheumatologist because they fear it may be perceived as challenging by their physician .

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 . Many patients perceive that online health information is confusing, and they have difficulties with formulating proper search strategies and evaluating the relevance and reliability . 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 http://www.rheumatology.org/Learning-Center/Glossary ).

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 . This study demonstrated that only a minority of videos is useful for teaching how to self-inject methotrexate. However, in a follow-up pilot study, using a self-developed web-based video to teach patients to self-inject methotrexate followed by further in-person nurse education showed that the video was a very efficient manner of informing patients. The results of the video equal the standard teaching practice with regard to patient satisfaction, confidence for self-injection and knowledge while decreasing teaching time by 25% . The video is available at http://www.youtube.com/watch?v=jTn9YaQZn1U .

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 . Furthermore, patients and their families value an audible record, because it allows them to share and reflect on what has been said. Nowadays, patients have also started to audio record their consultations using their phones, which has elicited strong reactions by some physicians . Clinicians have mixed perceptions regarding the benefits, values and risks. Some clinicians accept and understand the benefits for the patient, whereas others see this as a threat and a consequence of distrust. A legitimate concern of clinicians regards sharing the recording with a wider audience or goes viral on the Internet. This virgin territory requires a new policy . This new policy should incorporate recommendations such as (1) the physician should be informed before, (2) the recordings will not be distributed and/or altered and (3) if the physicians wants, he/she might receive a copy of the recordings.

• (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 .

The benefits of SDM

Patient involvement in decision-making is considered beneficial, because patients have the right to self-determination , and the successful treatment of RA relies heavily on patients׳ self-management. However, situations can occur that patients and rheumatologists are not agreeing on the best treatment. There are four possibilities; the patient and the rheumatologist agree to a certain treatment or they agree to not follow a certain treatment. In these two cases, consensus has been reached about an optimal treatment in an SDM process. The problem occurs when the patient exercises the right to self-determination of which he/she is entitled to: he/she does not want a certain treatment proposed by the rheumatologist. In most cases, the proposed treatment will not be given, although some physician would feel perhaps irritated as physicians might experience this patient (from a physician-centred view) as a non-cooperative patient. The fourth possibility in clinical practice can be described as follows: the patient proposes a certain treatment, such as different medication/dose or a scan, but the rheumatologist does not agree. Then, it is essential that guidelines are followed, and best available evidence is discussed and explained to the patient to clarify the rejection and to avoid an unhappy patient. Care should be given within the boundaries of best clinical practice. Therefore, the treatment needs to closely fit in with the patient׳s values and lifestyle . Furthermore, patient involvement is associated with better health outcomes, such as health status, self-management, adherence, coping behaviour and satisfaction with care . The results are especially promising in chronic care where the doctor–patient relationship is potentially a long-term one, and it requires partnership . Finally, patient participation is important because studies show that patients׳ and rheumatologists׳ beliefs about illness and treatment may differ. This includes how they rank the potential benefits and side effects of available treatment options, how they prioritise long-term outcomes and how they approach the escalation of treatment . Therefore, high-quality patient–physician communication about the choice of treatment is important.

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’ . Importantly, the EULAR international task force developing RA treatment recommendations noted that ‘decision-sharing by patient and rheumatologist is of such overwhelming importance that it should spearhead the recommendations’ .

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 . 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 . 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 . Moreover, clinicians may overestimate their actual level of SDM , and some believe that patients do not want to participate in medical decision-making . However, several studies have shown that RA patients have a high information need, and they want to be more actively involved in medical decision-making .

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 ( Table 1 ).

This process can roughly be divided into three phases ( table 1 ):

• 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 .

  
  
• 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 . 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 . Moreover, patients who initially may be reluctant to participate may change their mind after the options have been presented . Therefore, preference elicitation should be done at each decision and after presenting the options. This task requires empathic attention to the situation of the patient, and to the verbal and non-verbal cues the patient offers as the clinician invites the patient into the deliberative process . If the patient decides to leave the decision-making to his/her doctor, the patient׳s values and preferences are still valuable to enhance the chance of success of treatment. Then, the doctor has the challenging task to decide in the patient׳s best interest; deciding which treatment fits in with the patient׳s personal values and lifestyle.

SDM also covers shared responsibility . This specific aspect may be attractive to some patients and frightening to others . Unexpected responsibility can be a burden, which is not desirable. To prevent patients from feeling abandoned to have to decide on their own, clinicians will need to make explicit that it is a shared process and not a derogation of 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 . Moreover, PtDAs have improved patients׳ involvement in medical decision-making, and they lead to decisions that are more in line with patients׳ personal values . PtDAs can have a positive impact on patients׳ satisfaction with decision-making, anxiety, adherence or health outcomes . Although there is a clear need for increased patient involvement in RA, only a few studies on PtDAs in rheumatology have been reported, and the effects of the PtDAs have not yet been thoroughly determined .

Recently, a PtDA about RA medications, for use during the clinical encounter, was developed specifically for patients with limited health literacy . By using five issue cards, the PtDA focuses less on reading and more on conversation and verbal exchange of information. A field test proved the PtDA to be effective in promoting a conversation and exchange of experience on the part of the clinician and values and preferences on the part of the patient.

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 , 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 . This PtDA focused on two options: to take methotrexate as prescribed or to refuse methotrexate and talk to the doctor about other treatment options. A pilot study among 30 participants reported improvement in patients׳ decisional conflict and knowledge after using this PtDA.

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 . This tool is an interactive, web-based, computerised educational module with voiceovers. The main focus of this PtDA is on supporting accurate risk perceptions when patients face the decision to initiate a biological DMARD. Preliminary evidence showed that this tool increased patients׳ knowledge, patients׳ willingness to escalate care and the likelihood of making an informed value-concordant choice. The most recent study reports the effects of a PtDA that enables patients to compare multiple DMARDs on clinical aspects and possible impact on daily life . This PtDA provides patients the opportunity to compare multiple specific DMARDs, perform exercises to gain insight in their preferences, worries and questions, and endorses patients to express these feelings and questions to the health professionals. A quasi-experimental study showed that users perceived a more active role in decision-making, and they perceived the final choice to be more consistent with their personal values.

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 Table 2 ).

Table 2

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