CARABELA-IP exploratory focus group: Understanding vaccination challenges in immunocompromised patients - a patient-centered approach

Abstract

Objective

Immunocompromised patients (IPs) face a heightened risk of vaccine-preventable infections, yet vaccination coverage remains suboptimal. Barriers such as fragmented care, insufficient patient education, and limited coordination between healthcare providers persist, despite guideline-based recommendations. As part of the CARABELA-IP initiative, we aimed to better understand the lived experiences of IP in Spain, to identify areas for improvement and amplify the patient voice in shaping more effective vaccination strategies.

Material and methods

We conducted exploratory online focus group sessions with three IPs from different regions of Spain. Discussions explored communication and coordination with healthcare professionals (HCPs), access to information and education on vaccines, and emotional well-being throughout the vaccination process. Participants also completed a short pre-session questionnaire, including numeric scales and an empathy map to assess satisfaction and emotional response during each phase of their vaccination journey.

Results

Participants expressed a proactive attitude toward vaccination but reported inconsistent information from HCPs, limited follow-up, and fragmented care across healthcare levels. They described notable emotional differences during the vaccination process: vaccinated patients described increased peace of mind, while the unvaccinated participants reported feelings of vulnerability. All participants called for more accessible education materials, better digital tools, and the implementation of a dedicated case manager to coordinate care and guide them through the vaccination process.

Conclusions

This study highlights unmet needs among IPs related to communication, education, and coordination of care. Leveraging patients' strong motivation to be vaccinated through more structured, empathetic, and accessible vaccination pathways could significantly improve uptake and outcomes in this vulnerable population.

Resumen

Objetivo

Los pacientes inmunocomprometidos (PI) presentan un mayor riesgo de enfermedades inmunoprevenibles, aunque las coberturas vacunales siguen siendo subóptimas. Barreras como la atención fragmentada, la escasa educación al paciente y la limitada coordinación entre profesionales sanitarios persisten a pesar de las recomendaciones basadas en guías. En el contexto de la iniciativa CARABELA-IP, nuestro objetivo fue comprender mejor las experiencias vividas por los PI en España, identificar áreas de mejora y darles voz para contribuir al diseño de estrategias de vacunación más eficaces.

Material y métodos

Se realizaron sesiones exploratorias online de grupos focales con tres PI de diferentes regiones de España. En ellas se exploraron la comunicación y coordinación con los profesionales sanitarios, el acceso a la información y educación sobre vacunas, y el bienestar emocional durante el proceso de vacunación. Las participantes completaron un breve cuestionario pre-sesión que incluía escalas numéricas y un mapa de empatía para evaluar su satisfacción y respuesta emocional en cada fase de su recorrido de vacunación.

Resultados

Las participantes expresaron una actitud proactiva hacia la vacunación, pero refirieron recibir información inconsistente de los profesionales sanitarios, un seguimiento limitado y una atención fragmentada entre niveles asistenciales. Describieron diferencias emocionales notables durante el proceso de vacunación: las pacientes vacunadas describieron una mayor tranquilidad, mientras que la no vacunada manifestó sentimientos de vulnerabilidad. Todas las participantes solicitaron materiales educativos más accesibles, mejores herramientas digitales y la implementación de un gestor de casos dedicado para coordinar y guiar su proceso de vacunación/inmunización.

Conclusiones

Este estudio revela necesidades no cubiertas entre los PI relativas a la comunicación, la educación y la coordinación asistencial. Aprovechar la fuerte motivación de los pacientes por vacunarse mediante itinerarios de vacunación más estructurados, empáticos y accesibles podría mejorar significativamente la cobertura vacunal y los resultados en salud en esta población vulnerable.

Introduction

Immunocompromised patients (IPs) represent a unique and highly vulnerable population characterized by weakened immune systems that fail to respond adequately to infections, leading to an increased risk of severe and preventable diseases.¹ This vulnerability stems from a variety of underlying conditions, including hematologic malignancies, HIV/AIDS, chronic kidney disease, immune-mediated inflammatory diseases treated with immunosuppressive therapies or biologics, and primary immunodeficiencies, or therapeutic interventions such as solid organ or hematopoietic stem cell transplants. These patients often experience complications that may necessitate admission to Intensive Care Units (ICUs).²

Advances in the management of IPs, combined with significant progress in treating cancer, hematologic malignancies, and immune-mediated diseases, have notably reduced associated mortality rates. This, together with a globally aging population whose immune function is often affected, has led to a substantial increase in the proportion of immunocompromised individuals, particularly within the ICU setting. As such, this patient population is highly heterogeneous.^3–5 IPs are more prone to infections, such as influenza, pneumococcal disease or COVID-19, while complications arising from varicella-zoster virus reactivation tend to be more severe in this population, all of which significantly contribute to morbidity and mortality.^2,5–8 This emphasizes the critical importance of effective preventive strategies, mainly immunization, in improving their quality of life and reducing healthcare burdens.

Although clear guidelines recommend tailored immunization plans for IPs and their household contacts,^1,9–15 significant challenges persist in achieving optimal vaccination coverage. A lack of standardized immunization protocols, heterogeneity of clinical profiles among IPs, and insufficient awareness regarding the importance of vaccination of IPs, their household contacts, and even healthcare providers (HCPs) are listed among the most relevant,^12,16–21 and highlight the existing gap between clinical guidelines and real-world practices.

The CARABELA-Immunocompromised Patient initiative (CARABELA-IP), part of the broader CARABELA framework, aimed to address these gaps by collecting clinician perspectives on current healthcare models.²² The initiative sought to characterize the vaccination process for IPs, aiming to provide solutions for standardizing efficient and coordinated management that enhances patient care and quality of life. Importantly, the findings of CARABELA-IP emphasize the need to engage not only IPs but also their household contacts and HCPs in vaccination strategies.

This study expands the findings of the CARABELA-IP initiative by giving IPs a voice and collecting their perceptions and experiences regarding vaccination. We believe that patients' insights help inform clinical practitioners and contribute to developing more patient-centered and effective vaccination strategies. These efforts are crucial not only for mitigating the burden of preventable infections but also for ensuring a better quality of life for IPs and their families.

Material and methods

The CARABELA-Immunocompromised (CARABELA-IP) initiative²² follows the CARABELA methodology, developed to enhance the management of chronic diseases in real-world Spanish clinical practice.²³ This initiative was led by a Scientific Committee composed of the authors of this manuscript in collaboration with AstraZeneca and the following Spanish scientific societies: the Spanish Society of Preventive Medicine, Public Health, and Healthcare Management (SEMPSPGS), the Spanish Association of Vaccinology (AEV), the Spanish Society for Healthcare Quality (SECA), and the Spanish Society of Health Directors (SEDISA).

Participants and interviews

Patients were recruited through patient advocacy groups, including the National Federation of Associations for Kidney Patients (ALCER), the Madrid Diabetes Association, and the Malaga Association for Multiple Sclerosis Patients and Families (Amfaem), in collaboration with the Spanish Patient Forum (FEP). These associations identified IPs who could contribute to the objective of this project by sharing their experiences and perceptions of the vaccination process and providing insights into current challenges as active healthcare users.

We conducted three one-hour exploratory online focus group sessions with the three participants recruited through the abovementioned associations. All discussions were semi-structured, using open-ended questions organized into three key areas:

• 1.

  Communication and coordination: To explore interactions with HCPs, communication quality, and coordination across primary and specialized care.

• 2.

  Patient education: To assess patients' understanding of vaccination protocols, awareness of recommended vaccines, and engagement in self-care and disease management.

• 3.

  Emotions, quality of life, and vaccination experiences: To examine physical, emotional, and social impacts of vaccination and patients' perceptions of their safety and well-being.

Patients were sent a questionnaire before the online focus group session. This questionnaire included both quantitative and qualitative components: a) a numerical rating scale (0 = strongly disagree to 10 = strongly agree) to assess their agreement with statements about communication, coordination, and overall vaccination experiences; b) an empathy map designed to capture patients' emotional journey through the vaccination process. To produce this map, the participating patients were asked to score their emotional well-being through the different phases of the vaccination process (from 0 = strongly unsatisfied to 10 = strongly satisfied). One patient completed the questionnaire offline and submitted it before the session, while the other two completed it orally during the session. Discussions were audio-recorded and transcribed verbatim. Transcriptions were verified for accuracy against the recordings to ensure data integrity.

Qualitative data were analyzed to identify themes of recurring communication, patient education, and emotional well-being. Insights were categorized to highlight barriers, facilitators, and actionable recommendations for improving the vaccination process in IPs, while quantitative responses were summarized to provide complementary insights into patients' perceptions and priorities.

This mixed-methods approach ensured a comprehensive understanding of the patient experience.

Results

This exploratory qualitative study included three female participants, aged between 40 and 55 years; two were from Andalusia and one from Madrid (Spain). Two patients had been living in an immunocompromised situation for 5 years or less, while the other had been immunocompromised for 30–35 years. A visual summary of patients' perspectives on the different aspects of their vaccination journey is represented in Fig. 1.

Figure 1.

Summary of key ratings from the three participants included in this exploratory study across various discussion topics. The numbers (0–10) represent the average ratings given by participants, with color coding to indicate the respective numeric range. HCP, healthcare provider; QoL, quality of life.

Communication and coordination

All patients demonstrated a proactive attitude toward vaccination. According to their testimonies, they often requested that HCPs provide information. This engagement often resulted in the patients and their cohabitants maintaining regular vaccination schedules. Nevertheless, patients highlighted that the information provided by HCPs regarding vaccination often lacked sufficient detail, prompting them to seek additional information from external sources. They also noted inadequate guidance on the importance of vaccinating their household contacts.

Participants reported inconsistencies and a lack of cross-level communication between Primary Care and Hospital Care and between prescribing physicians and Preventive Medicine professionals (Fig. 1). Most participants believed this lack of coordination could be resolved by promoting better communication and ensuring the interoperability of Primary Care and Hospital Care systems. In this regard, vaccinated patients reported a perception of a limited role of Preventive Medicine professionals in the immunization process, as these professionals primarily conducted initial visits and administered the first doses of vaccines, but were not further involved in the follow-up or ongoing monitoring of their vaccination status. When discussing appointment coordination, patients appreciated the scheduling flexibility offered for their immunization, as multiple vaccines could be administered during a single visit when requested. However, they often had to take responsibility for scheduling and tracking their vaccination appointments (Fig. 1). To address this obstacle, the implementation of a dedicated reference person or case manager who could oversee the coordination and monitoring of their vaccination process was unanimously valued by patients, as this figure would provide personalized support and guidance and offer a more coordinated and patient-centered experience.

Based on participants' opinions, the heterogeneity of vaccine administration locations, with some vaccines provided at health centers and others at hospitals, added complexity to the process.

To mitigate some of these challenges, participants emphasized the value of some tools, such as SMS reminders for vaccination appointments. They also appreciated being able to balance their medical care with their work and personal life through teleconsultations and flexible scheduling options (Fig. 1). However, they reported that the fragmentation in healthcare delivery led to duplicating tasks, such as receiving multiple reminder SMS messages for the same vaccine from different care levels. Participants positively valued the possibility of implementing a centralized and shared medical record system to streamline communication between care levels and improve efficiency.

Patient education

Participants consistently demanded more comprehensive and accessible information regarding immunization, reflecting an interest in enhancing their own understanding and that of their close contacts regarding the vaccination process and its objectives. Patients specifically complained about the lack of details provided by HCPs about the vaccines they were to receive, their potential side effects, and the critical importance of cohabitants' vaccination (Fig. 1). The availability of physical and digital educational materials would be crucial for making informed decisions regarding their health. Participants complained about the lack of educational resources available to them. Despite the often closer contact with nurses, patients perceived that their role was primarily focused on administering vaccines, with limited emphasis on providing additional education on self-protection.

All participants expressed a strong interest in receiving updated information about new vaccination recommendations. In this respect, they viewed several initiatives favorably as useful ways to foster empowerment, improve their understanding of immunization, and promote adherence to vaccination schedules. For instance, patients positively viewed access to digital solutions to address concerns and receive health education. However, they emphasized the need to account for the challenges posed by the digital divide. Participation in other educational interventions, such as Expert Patient workshops or activities organized by patient advocacy groups, was considered very positive for sharing experiences and gaining valuable insights regarding vaccination (Fig. 1). Patients expressed a need for more initiatives to enhance knowledge and understanding of the vaccination process.

Emotions and quality of life

We collected varied perceptions regarding the vaccination process since one participant had not received any vaccinations. Immunized participants reported that the vaccination process did not interfere with their daily activities or negatively impact their physical or emotional well-being. On the contrary, they felt more protected against preventable diseases, which provided a sense of security and peace of mind in their daily lives. The absence of vaccination generated feelings of vulnerability for the patient who had not been vaccinated, adding an extra layer of concern. However, all patients manifested a proactive attitude toward managing their physical and emotional well-being. Immunized individuals felt reassured by the proactive steps taken to protect themselves. At the same time, those who had yet to undergo the process expressed a need for more guidance and support to alleviate their concerns about vaccination.

Participants' emotional experiences related to vaccination were illustrated using an empathy map, a visual tool that outlines the average emotional journey experienced by patients at various stages of the vaccination process (Fig. 2). Participants generally described feeling emotionally stable and positive throughout the process, though some phases were associated with mixed emotions. For instance, during the communication phase, patients reported relief after receiving the necessary information but also felt unease due to the limited details provided (Fig. 2). In subsequent stages, including the first dose, booster doses, and annual vaccinations, patients experienced increased feelings of calm and security, underscoring the protective value of immunization. However, when patients were informed about new vaccinations, they reported a recurrence of unease due to a lack of information, leading to confusion about the necessity of these immunizations. Patients reported a complete lack of follow-up during vaccination (Fig. 2). In this respect, they emphasized the importance of implementing questionnaires to monitor their symptoms and quality of life and ensure better care and oversight (Fig. 1).

Figure 2.

Empathy map illustrating the emotional journey of IPs during the vaccination process. This figure represents the emotional experiences of three participants included in this exploratory study across the phases of the vaccination process, represented in the upper part. The degree of emotional well-being at each stage is indicated by stars, with the curve reflecting an average emotional profile based on patients' shared perceptions and experiences. Peaks in the curve represent phases of high emotional comfort, whereas troughs represent moments of emotional discomfort, stress, or uncertainty. The follow-up visit phase has no assigned score, as none of the participants experienced this stage of the care process.

Discussion

The rapid development of immunosuppressive therapies has led to a notable increase in the prevalence of immunocompromised individuals. The efficacy of vaccines in lowering hospitalization and mortality rates in these patients has been consistently reported.^24–28 Thus, tailored and improved vaccination strategies must be implemented to reduce the burden of vaccine-preventable diseases, prioritizing protection for risk groups, including IPs.^29–31 Preexposure vaccination for IPs and their close contacts is a crucial preventive strategy against infections and their potential transmission.^{1,10–12,19,21,32} Despite the critical importance of immunization for these populations, awareness remains suboptimal. Additionally, due to the lack of guidance and understanding, household contacts often do not adhere to clinical practice guidelines for vaccination, leaving IPs vulnerable to preventable infections.^{10–12,32,33}

Optimizing IP vaccination requires a comprehensive assessment of the current barriers and the identification of effective strategies to overcome them. In the context of increasing interest in patient-centered care, it is crucial to collect IPs' personal experiences and perspectives to better understand their priorities and unmet needs in their personal journeys through the vaccination process.

Participants agreed that the lack of awareness and knowledge on vaccination constituted a missed opportunity to enhance their engagement with vaccination, which aligns with reported findings from patients and healthcare systems worldwide.^{16–18,34–37} The lack of awareness and adherence to national and international vaccination recommendations pose a vital health risk and account for the still suboptimal vaccination uptake not only among IPs but also among household members, which leads to increased and preventable health risks.^{9–12,21,34,38,39} Raising awareness among HCPs, patients, and the overall population of the importance of vaccination in this vulnerable group is crucial for implementing successful vaccination programs, increasing vaccination rates, and reducing the risk of severe infections and mortality. The lack or scarcity of communication between HCPs and IPs about vaccination is a critical issue leading to suboptimal vaccination rates. Indeed, one of the most common reasons IPs report not receiving vaccination is the absence of an offer or recommendation from their HCPs. It is very telling that one out of the three participants in our small focus group had not received any vaccinations, reinforcing the need to improve the quantity and quality of information offered by their care providers. Efficient communication on up-to-date evidence can reduce patient vaccine hesitancy.³⁴ In this regard, the role of the HCPs is crucial. Strong, evidence-based vaccine recommendations from care providers significantly influence patients' acceptance and empower them to make well-informed decisions on vaccine uptake.^40–43 As the most reliable source of information for patients, care providers can also efficiently reduce vaccine hesitancy by helping to alleviate patients' concerns and thereby increasing their likelihood of receiving vaccination.^17,44–46 However, some reluctance has been identified among many HCPs in primary and specialized care, which may stem from various factors, including insufficient knowledge about vaccines, a lack of awareness regarding updated immunization guidelines, or even personal beliefs and concerns that influence their willingness to advocate for vaccination.^46,47 This enhances the need for tailored educational initiatives directed at IPs, their close contacts, and HCPs at every care level to address misconceptions and reinforce their knowledge based on updated and grounded evidence. In this sense, physical or digital educational materials may be a powerful tool to enhance IP knowledge and understanding of vaccines and immunization. More recent digital strategies have been proposed to accommodate diverse patient preferences and improve adherence to vaccination schedules, including vaccination reminders, targeted automated alerts for HCPs and patients, or messages inviting patients to vaccination and delivered through multiple communication channels, including their electronic medical records.^48–51

The lack of follow-up throughout the vaccination process and the uncertainty regarding vaccination pathways reported by participants in our exploratory online focus group highlighted a deficiency in coordination among the various levels of care involved in their immunization. Patients identified the need for greater involvement of Preventive Medicine and Nursing services throughout the vaccination process. This lack of engagement exacerbates communication challenges, leading to missed vaccination opportunities and fragmented healthcare delivery.⁵² Enhancing active collaboration among HCPs, including Primary and Hospital Care physicians, Preventive Medicine experts, and Nursing teams, is essential to address these barriers.¹² HCPs at various care levels must share responsibilities to ensure IPs do not miss vaccination opportunities.

In our study, patients unanimously valued the role of a dedicated case manager to streamline coordination and communication further. Implementing such figures has proven to facilitate healthcare navigation, enhance patient education, and improve adherence to vaccination schedules.^53,54 Structured follow-up strategies associated with this role may also foster patient trust, reinforce adherence to vaccination schedules, and improve their quality of life. Moreover, the standardization of vaccination protocols and integration of shared information platforms, such as electronic health records, can enhance communication and coordination among healthcare providers, ultimately leading to higher vaccination rates.^55,56

Notably, our vaccinated participants reported a sense of security against infectious diseases, with no major disruptions to their daily activities, reinforcing their perception that vaccination is both beneficial and well-tolerated. This underscores IPs' positive willingness to receive vaccination to ensure their protection and well-being. Leveraging this positive attitude can enhance vaccine adherence and ensure broader vaccination coverage in this vulnerable population. Effective engagement strategies integrating targeted educational initiatives addressed to IPs and household contacts, improved healthcare coordination, and strengthened proactive communication can maximize vaccine uptake and long-term adherence among IPs and their cohabitants. Strengthening the role of HCPs at every care level in vaccination advocacy will further support the integration of vaccination as a sustained component of IP care.

While this work offers valuable insights into IPs' perceptions and experiences regarding vaccination, some limitations must be acknowledged. The limited number of participants restricts the generalizability of our findings and precludes the analysis of potential regional differences in vaccination access or adherence. Additionally, the use of self-administered questionnaires may have introduced elements of subjectivity and recall bias. Accordingly, these findings should be interpreted as exploratory.

To our knowledge, no previous studies have explored the perspectives of IPs through exploratory online focus group methodology in Spain, making this work a novel contribution to the understanding of their real-world needs and experiences.

Beyond its exploratory nature and the limited number of participants, this study provides a unique opportunity to directly engage with the real experiences of IPs, who shared their emotions, barriers, and suggestions with honesty and clarity. Through their voices, we uncovered not only the need to improve vaccination pathways but also a broader call to humanize the process, to listen more attentively, and to place patient perspectives at the center of care. In a context often dominated by technical considerations, this initiative serves as an exercise in empathy and alignment with what truly matters: ensuring that healthcare systems respond to the expectations, fears, and hopes of those who rely on them the most.

Conclusions

Our study highlights important gaps in vaccination awareness, education, and coordination among HCPs according to real IPs' experiences. Despite these challenges, patients' positive perceptions and willingness to adhere to vaccination schedules when adequately informed highlight an opportunity for intervention. Implementing comprehensive educational programs and improving healthcare delivery systems may help enhance vaccination uptake and, consequently, the quality of life of this vulnerable population.

Consent for publication

Not applicable.

Ethics approval and consent to participate

All patients recruited for this initiative provided informed consent to participate and authorized the processing of their personal data (email address, age, sex, geographical origin, medical condition, years since diagnosis) and their responses to the questionnaire provided. The data collection process was conducted in full compliance with the current Spanish legislation on personal data protection, specifically Organic Law 3/2018, of December 5, on the Protection of Personal Data and Guarantee of Digital Rights (https://www.boe.es/eli/es/lo/2018/12/05/3/con). No clinical interventions or collection of sensitive health data were performed. According to Spanish research regulations, including Law 14/2007 of July 3 on Biomedical Research and Royal Decree 1090/2015 of December 4, which primarily govern research involving clinical interventions or medicinal products, ethical committee approval was not required for this type of study. All procedures were conducted following the principles outlined in the Declaration of Helsinki.⁵⁷

Funding

This work was funded by AstraZeneca Farmacéutica Spain.

Availability of data and materials

Not applicable.

Acknowledgments

We warmly thank the participating patients for their undoubtedly generous contribution of their time and very personal experiences, and the National Federation of Associations for Kidney Patients (ALCER), the Madrid Diabetes Association, the Malaga Association for Multiple Sclerosis Patients and Families (Amfaem), and the Spanish Patient Forum (FEP) for their invaluable support.

CARABELA-IP is a co-organization agreement between medical societies and AstraZeneca Spain. Medical writing support under the guidance of the authors was provided by Susana Cañón-Sánchez, PhD, Medical Statistics Consulting (MSC), Valencia, Spain, in accordance with Good Publication Practice guidelines (http://www.ismpp.org/gpp3), and funded by AstraZeneca, Spain.