Shared Area of Focus

The stakeholder leads workshop identified a shared area of focus requiring improvement in PsA management which informed the rest of the programme—patient empowerment through education on the disease and treatment options available, to enable patient involvement in management. See supplementary materials (Table S2) for more information.

Participants

Participants of the PsA CC were recruited on the basis of their expertise and experience in PsA (Fig. 1; Table S1).

Themes and Narratives

Following the Delphi process, four key themes emerged that the consensus statements could be divided into.

1. Patient EmpowermentDiscussion Points

Consensus was reached on 23 statements relating to patient empowerment (Table S3). One of these statements was also used in the “patient knowledge and sources of education” narrative. Stakeholders aligned on the following definition of patient empowerment: patient empowerment is the process by which people are supported to gain sufficient knowledge, to enable them to be as actively involved as they want to be in making decisions that shape their health.

Stakeholders agreed that the level of empowerment is currently low to moderate among patients with PsA with scope for improvement, but added that there is large inter-patient variation, with some patients being very active in managing their condition. Improvements in patient empowerment could affect HCP–patient communications and treatment decisions, and ultimately lead to more ambitious treatment goals and better outcomes. However, it was also observed that patients with low empowerment may have unrealistically high expectations of treatment.

To achieve improved patient empowerment, patient education through high-quality educational materials is needed, as well as improved communication between payors, patients, and HCPs (Table 1). All stakeholders agreed that policy makers have a role in improving care. Stakeholders did not reach consensus when it came to the statement, “patient organisations should provide high-quality educational materials to HCPs” with some of those who disagreed arguing that, conversely, it should be HCPs educating patient organisations. Table 2 contains the overarching CTA and associated stakeholder-specific discussions for the theme of patient empowerment. Overarching CTA were derived from the CTA specific for each stakeholder group (Tables S4–S6) which were inspired by the consensus statements marked with a superscript dagger symbol in Table 1 and generated at the CC meeting.

Table 1 Patient empowerment narrativeTable 2 Overarching CTA and associated stakeholder-specific discussions for the theme of patient empowerment2. Patient Knowledge and Sources of EducationDiscussion Points

Nineteen statements relating to patient knowledge and sources of education reached consensus (Table S7). The statement “patients with PsA are already sufficiently knowledgeable about their disease” did not reach consensus with some who disagreed describing patient knowledge as “low” or “basic”. However, stakeholders agreed that patients should be given the opportunity, educational materials, and encouragement to learn about their disease and treatment options. Open-ended questions revealed that stakeholders felt patients need to have a more holistic understanding of their PsA including self-management options, psychosocial influences, oral health, comorbidities, menopause, family planning and treatment options at different life stages.

Consensus was not reached on the statement that the internet is the main source of low-quality educational resources about PsA for patients; however, a refined statement that “the internet is a source of both high- and low-quality education about PsA and the available treatment options” did achieve consensus. Despite the perception that information on the internet was of variable quality, almost all stakeholders said this is where patients get disease information from. When asked about the characteristics of high-quality educational materials, stakeholders cited the following: up-to-date information; open access, includes the patient perspective; includes imagery; is available in different formats and in a patient’s native language; uses accessible language; and is endorsed by a scientific organisation. Stakeholders agreed that HCPs are key to providing high-quality education to patients with PsA, but this is challenged by a lack of time during consultations; as a compromise, patient organisations were identified as playing a valuable role in directing patients to high-quality material.

The knowledge and sources of education narrative highlighted suboptimal patient knowledge of PsA (Table 3). There was consensus that patients must be sufficiently knowledgeable about their disease and available interventions to be included in making treatment decisions. Feedback from those who disagreed suggested that a great deal of knowledge was not necessary, although poorer decisions are likely to be made by less knowledgeable patients. To achieve a sufficient level of knowledge, patients need support to identify easily accessible, high-quality, neutral information on all aspects of PsA. Table 4 contains the overarching CTA and associated stakeholder-specific discussions for the theme of patient knowledge and sources of education. See Tables S8–S10 in the supplementary materials for the CTA per stakeholder.

Table 3 Patient knowledge and sources of education narrativeTable 4 Overarching CTA and associated stakeholder-specific discussions for the theme of patient knowledge and sources of education3. Patient–HCP ConsultationsDiscussion Points

Consensus was achieved on 18 statements relating to patient–HCP consultations (Table S11). The statement “HCPs recognise the full burden of PsA on patients” did not reach consensus; however, all stakeholders agreed that HCPs should ask questions to establish the full burden of PsA on all aspects of the patient’s life, rather than relying on the patient to proactively volunteer information. The statement that “patients with PsA are always routinely involved in treatment decisions” was very far from reaching consensus—involvement varies greatly between clinics and traditional, paternalistic HCP–patient relationships often remain. Therefore, the statement was refined to “many patients are not aware that they have an option to be involved in treatment decisions”, achieving almost complete agreement (92%).

Stakeholders did not reach consensus on who should have the final say on treatment decisions (the patient or physician). Discussion centred around the need for a trusting relationship and good communication, which led to 100% agreement that in the event of a disagreement on a treatment decision, “efforts should be made to reach a shared decision through further discussion”.

The patient–HCP consultations statements that were used to form the narrative (Table 5) indicated that improvements in patient–HCP consultations would require improved communication from HCPs and individualised treatment based on shared decision-making (SDM). All stakeholders agreed that patients should be educated on what they are entitled to in terms of their level of involvement in treatment decisions. It was agreed that HCPs need support to enable them to communicate effectively with patients about the full burden of their PsA. Table 6 contains the overarching CTA and associated stakeholder-specific discussions for the theme of patient–HCP consultations. See Tables S12–S14 in the supplementary materials for the CTA per stakeholder.

Table 5 Patient–HCP consultations narrativeTable 6 Overarching CTA and associated stakeholder-specific discussions for the theme of patient–HCP consultations4. Optimal Initial TreatmentDiscussion Points

Nine consensus statements relating to optimal initial treatment reached consensus (Table S15). Stakeholders reached consensus that currently payors prioritise cost considerations of PsA treatments across the population over individual patient outcomes; often guidelines dictate that drugs must be tried in a particular order in all patients, meaning those who physicians consider ideal for biologics must try and fail on other medications first (Table 7). However, feedback revealed that in Germany the physician is free to choose a treatment for a specific patient provided it is within the approved indication and it is the most economical option (e.g. a biosimilar before a reference biologic if it is less expensive). Stakeholders agreed that prioritising cost considerations over optimal initial treatment for patients with PsA can negatively affect treatment decisions and lead to poor patient outcomes. However, the need for healthcare systems to consider costs because of limited budgets was acknowledged.

Table 7 Optimal initial treatment narrative

In an open-ended question, one participant cited cost as the main barrier preventing patients from accessing optimal treatment initially; conversely another reported that optimal initial treatment is not costly—highlighting the need for health economic data to provide evidence for the most cost-effective treatment. Table 8 contains the overarching CTA and associated stakeholder-specific discussions for the theme of optimal initial treatment. See Tables S16–S17 in the supplementary materials for the CTA per stakeholder.

Table 8 Overarching CTA and associated stakeholder-specific discussions for the theme of optimal initial treatment