Resumen de The mixed-method assessment of patients' experience to improve health care services: the case of patients with chronic kidney disease
Brian Alexander Flórez Bolanos
In the complex landscape of healthcare, the concept of service quality stands as the pillar shaping patient experiences within healthcare organizations (Abbasi-Moghaddam et al., 2019). Service quality transcends clinical competence and encompasses a holistic approach that prioritizes patient satisfaction, positive health outcomes, and overall well-being (World Health Organization, 2018). The importance of healthcare quality is underscored by its direct correlation with patient well-being, treatment efficacy, and the overall success of healthcare systems (Agency for Healthcare Research and Quality, 2020). In this field, there are three fundamental variables: patient safety, efficacy, and patient experience (Institute of Medicine, 2001). These variables create a comprehensive framework for evaluating and improving the quality of healthcare services, recognizing the multifaceted nature of patient care. This research focuses on patient experience: the dimension that centers on the unique needs, preferences, and perspectives of individuals navigating the healthcare system (Oben, 2020).
Beyond conventional clinical outcome metrics, patient experience significantly contributes to treatment adherence, patient commitment, and overall satisfaction with healthcare services (Doyle et al., 2013). It is imperative to explore the importance of standardized and reliable methods for evaluating patient experience, as this helps improve care delivery, tailor interventions, and effectively address individual patient needs.
In the context of chronic kidney disease (CKD), the chronic and evolving nature of the disease makes understanding patient experience particularly important. Different stages of CKD represent distinct points of contact in the patient's journey, giving patient experience various dimensions.
Patient experience functions as a holistic measure encompassing a broad spectrum of interactions and contact points, while patient satisfaction captures the subjective evaluation of received care (Larson et al., 2019). The relationship between these terms is nuanced, reflected in the contradictory findings in existing literature. This thesis adopts a pragmatic approach where patient satisfaction is presented as an integral component of patient experience.
The primary objective of this research is to propose a conceptual model for evaluating patient experience across the entire spectrum of CKD. The thesis will integrate the results of a systematic review and patient journey mapping to develop a robust conceptual model providing a comprehensive framework for evaluating the patient experience with CKD.
Specific Objectives:
- Conduct an exhaustive systematic review of existing instruments dedicated to evaluating the care experience of CKD patients.
- Design and implement a patient journey mapping initiative involving CKD patients.
- Integrate data obtained from the systematic review and patient journey mapping.
- Outline a model for the evaluation of CKD care experience.
The thesis is structured into the following sections: Literature Review, Instrument Review, Empirical Study, Integration of Results, Conceptual Model Proposal, and General Discussion and Recommendations.
Chronic Kidney Disease The kidneys are essential for regulating the volume and composition of body fluids-primarily sodium, potassium, and electrolytes-achieved through continuous blood filtration. When the kidneys fail and can no longer regulate changes in the volume and osmolality of body fluids, the mechanisms for salt and water intake are affected (National Kidney Foundation, 2021).
There are two distinct conditions related to kidney failure: acute kidney injury (AKI), a sudden and often reversible decrease in kidney function; and chronic kidney disease (CKD), a long-term condition marked by the gradual loss of kidney function over a prolonged period, usually caused by conditions such as hypertension or diabetes (National Kidney Foundation, 2021).
CKD is classified into different stages based on the glomerular filtration rate (GFR), which provides a figure reflecting the filtration capacity of the kidneys (National Kidney Foundation, 2021). The stages range from mild kidney failure (stages 1 and 2), moderate kidney failure (stage 3), to end-stage renal disease (ESRD; stages 4 and 5); each represents progressively higher levels of kidney dysfunction (Gibertoni et al., 2021). As CKD progresses, patients may experience symptoms such as fatigue, weakness, and a decline in general well-being (Almutary et al., 2013). From stage 2 onwards, CKD patients may need to make significant lifestyle changes, such as modifying their diet, restricting fluid intake, and undergoing regular medical check-ups. As CKD advances to stage 5, ESRD, patients' daily functional capacity undergoes substantial deterioration. Life-support interventions, such as hemodialysis or peritoneal dialysis, become essential in this critical phase, aiming to remove waste products from the bloodstream and preserve electrolyte balance (Hole et al., 2020).
Typically, hemodialysis requires patients to visit a dialysis center several times a week, where a machine filters the patient's blood through a catheter. This process affects the patients' daily functioning, as it requires a rigid schedule and adjustments in the individual's lifestyle. In contrast, peritoneal dialysis, a process involving washing the abdominal cavity with dialysis fluid to cleanse the blood, is usually done daily and can be performed at home, even while sleeping. This method requires a surgically placed access in the abdominal wall and offers more daily flexibility, but it requires patients to perform the dialysis procedure themselves or with the help of a caregiver, which can also mean a significant change in daily routines (Sinnakirouchenan & Holley, 2011).
The treatment of CKD involves a diverse approach addressing both the medical aspects of the disease and the overall well-being of the individual. Lifestyle changes, pharmacological interventions, and psychosocial support play a crucial role in improving the quality of life for CKD patients.
Prevalence, Background, Diagnosis, and Treatment The prevalence of CKD is increasing globally, affecting over 10% of the world's population (more than 800 million individuals) (Kovesdy, 2022). CKD poses a significant public health challenge in Spain due to the aging population and the prevalence of risk factors such as diabetes and hypertension (Red de Investigación Renal, 2021), and represents a considerable economic burden encompassing direct healthcare costs, productivity losses, and the social impact of disability and premature mortality (Catalá-López et al., 2012). Comprehensive strategies focused on prevention, early detection, and control of risk factors are required to address its importance.
There remains a significant research gap regarding the evaluation of patient perspectives and experiences in coping with CKD. Little attention has been paid to the impact of different stages of the disease on various aspects of patients' lives, including cognitive, social, emotional, and psychological dimensions. Evaluating patient experience is essential for understanding the holistic impact of CKD. Such evaluation highlights the need for patient-centered research to improve the quality of care and support provided to those affected. Standardized questionnaires and surveys are usually used to assess the level of satisfaction with received care (Beattie et al., 2014); however, few studies focus on the factors that enhance or hinder the care experience, such as the influence of healthcare professional-patient communication, accessibility to information, and psychosocial support (Sheard et al., 2019).
Patient Experience: Concept, Relevance, and Traditional Evaluation Methods Patient experience encompasses the sum of all interactions a patient has with the healthcare system, from the initial point of contact to the end of care, and includes the emotional, psychological, and social aspects of the patient journey. Today, patient opinions are no longer considered optional but essential for providing high-quality care.
As a result of the growing emphasis on patient experience, healthcare providers, researchers, and policymakers have developed various surveys and questionnaires to comprehensively capture this concept (Ahmed et al., 2014). However, the complexity of the term presents significant challenges. The concept of patient experience has been conceptualized in various ways in both practical applications and research work, necessitating clarification and differentiation from related constructs. It is crucial to distinguish between the concepts of "experience" and "satisfaction" to obtain a more nuanced perspective on healthcare delivery, as these terms have often been used interchangeably; however, with the evolution of healthcare paradigms, it is increasingly recognized that patient experience encompasses a broader scope than mere satisfaction.
Patient satisfaction tends to focus on meeting or exceeding expectations, which can be influenced by factors unrelated to the quality of care (Batbaatar et al., 2017). On the other hand, patient experience involves a holistic evaluation of the entire care journey, including aspects of care delivery that go beyond satisfaction metrics. One of the challenges in measuring patient experience is the need to go beyond the use of surveys and questionnaires. According to guidelines by Wolf et al. (2014), the changing healthcare landscape underscores the need for diverse methodologies to thoroughly evaluate the complexities of patient experience. It is imperative to explore alternative methodologies to ensure a more nuanced and comprehensive evaluation of patient experience, such as combining quantitative surveys with qualitative methods. A mixed-methods design allows for a comprehensive understanding and triangulation of qualitative and quantitative data. Thus, the innovative approach known as patient journey mapping (Joseph et al., 2020) emerges to address the limitations of conventional patient satisfaction surveys and meet the need to holistically understand patient experience throughout their healthcare journey.
Patient journey mapping (PJM) involves a systematic and in-depth exploration of patient experiences at different stages of their healthcare journey, identifying key touchpoints, challenges, and specific needs at each stage (Stickdorn & Schneider, 2012). Firstly, PJM includes qualitative interviews that delve into patient narratives, providing valuable insights into their experiences (Patton, 2015). It also includes quantitative surveys and standardized scales, offering measurable data points for analysis (Cleary et al., 1992). Finally, in some cases, observational methods are also used to assess patient interactions at different touchpoints within the healthcare system (Patton, 2015). The advantages of PJM extend to the various participants in the healthcare process. For patients, it ensures that their voice is central in the care improvement process, promoting patient-centered care. Healthcare professionals- benefit from insights into patient experiences, which help tailor interventions and improve communication. Policymakers find value in PJM data, supporting the development of policies that align healthcare policies with patient needs.
There is empirical evidence of the advantages of PJM in improving patient-centered care (McCarthy et al., 2016), as the approach has been applied in various populations and has encompassed a range of healthcare settings including hospitals, clinics, and primary care centers (Hagendijk et al., 2023; Kushniruk et al., 2020). Current findings also highlight the effectiveness of PJM in identifying key areas for improvement in overall healthcare delivery and has been particularly valuable in enhancing patient-centered care, optimizing communication strategies, and streamlining processes to better align with patient expectations (Agarwal, 2017). Additionally, PJM has been instrumental in fostering a more empathetic and patient-centered healthcare culture, ultimately contributing to improving patient satisfaction and overall well-being (Ly et al., 2021).
An important limitation of PJM lies in the subjective nature of patient memories, as they can be influenced by the passage of time and emotions (Bookbinder & Brainerd, 2016), which could lead to inaccuracies in journey description. Moreover, the complexity of healthcare systems and interactions with multiple stakeholders may pose challenges in accurately capturing relevant touchpoints (McCarthy, 2016). Furthermore, the need to use qualitative methods in PJM application hampers its effectiveness, as it requires more time and resources, in addition to restricting the number of patients that can be evaluated. However, PJM is crucial in identifying inefficiencies, gaps, and improvement opportunities in healthcare processes (Trebble et al., 2010). The visual representation of the patient journey facilitates meaningful communication between healthcare providers and patients, and promotes better identification of challenges to be addressed, as well as fostering collaboration (Davies et al., 2023).
Conceptualization and Measurement of Patient Experience with CKD The concept of patient experience in the context of CKD encompasses a holistic understanding of patient encounters with the healthcare system, from interactions during initial diagnosis to various stages of the disease and treatment modalities.
Various methodologies can be employed to measure patient experience with CKD, ranging from quantitative surveys and patient-reported outcome measures (PROMs) to qualitative interviews and focus groups. A commonly used survey is the Kidney Disease Quality of Life Short Form (KDQOL-SF), utilized in studies by Hays et al. (1994) and Mujais et al. (2009). Another notable tool is the Patient-Reported Outcomes Measurement Information System (PROMIS), demonstrated in the study by Cella et al. (2010). Additionally, qualitative methodologies, exemplified by studies by Cheng et al. (2021) and Kelly et al. (2018), uncover nuanced aspects of patient experience. Likewise, studies such as those by Street et al. (2011) and Cleary & Edgman-Levitan (1997) illustrate the effectiveness of mixed methods approaches in capturing the dynamics of patient experience.
Despite the existence of studies employing PJM in various healthcare contexts (Smith et al., 2018; Johnson et al., 2019), there is a research gap in using PJM to measure the experience of patients with CKD. The use of PJM can be instrumental in capturing the intricate dynamics and multifaceted challenges faced by CKD patients in different stages of their illness (Figueiredo et al., 2017).
The application of PJM in CKD contexts may be limited due to the diversity of patient experiences, different stages of CKD, and individualized responses to healthcare interventions. Furthermore, PJM and the use of mixed methodologies require more time, resources, and analytical complexity than traditional quantitative methods. This thesis will systematically address the limitations by integrating findings from a comprehensive systematic review focused on instruments measuring patient experience in CKD along with PJM that combines qualitative and quantitative methods.
SYSTEMATIC REVIEW This systematic review aims to comprehensively evaluate instruments used to measure patient experience and satisfaction in the context of CKD, encompassing both generic and disease-specific tools. It has the following objectives: (1) identify and compile instruments proposed and used to assess patient experience with CKD; (2) examine the various domains and dimensions captured by these instruments, analyzing overlaps and singularities; (3) evaluate the psychometric quality of the diverse measures employed; (4) synthesize key findings from the literature, illustrating the utility and efficacy of the instruments; and (5) identify existing gaps and provide recommendations for enhancing the evaluation of patient experience with CKD. This exhaustive evaluation will provide valuable insights into the strengths and limitations of current assessment tools, facilitating the design of personalized assessments and interventions that consider the various stages of CKD and individual patient characteristics.
The systematic review follows PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines, widely recognized for guiding synthesis research in healthcare contexts. The search was conducted in relevant databases (PubMed, Embase, CINAHL, PsycINFO, Web of Science, and Google Scholar), and manual searching was also performed to identify additional studies related to CKD. The search strategy employed a combination of keywords: ("chronic kidney disease" OR CKD OR "renal disease") AND ("patient experience" OR "patient satisfaction" OR "patient perception" OR "satisfaction survey") AND ("questionnaire" OR "instrument") AND ("generic" OR "disease-specific"). The timeframe spans from January 1998 to June 2023.
Initially, studies meeting the following criteria were included:
Studies including instruments proposed and validated specifically in the context of CKD, or instruments that, despite being proposed for general or chronic patients, were used and validated in CKD samples.
Studies reporting on the psychometric properties of the questionnaire and specific dimensions thereof (if applicable).
Studies published in English or Spanish.
The results of the search strategy and the selection process were documented using the PRISMA flow diagram. A total of 170 records were obtained from searches and 8 additional records were obtained through other sources related to CKD. Once duplicates were removed, 158 records were examined according to the inclusion criteria. Application of the inclusion criteria to titles and abstracts resulted in the exclusion of 115 records. 43 full-text articles were obtained and, after applying the inclusion criteria to full-text articles, 34 were rejected and 9 were retained.
The evaluated scales demonstrated solid psychometric properties, including reliability coefficients ranging from adequate to high based on internal consistency, with Cronbach's alpha coefficients ranging from 0.70 to 0.93 across different instruments. The inclusion of test-retest reliability assessments for some of the instruments further bolstered scale credibility in three of them, demonstrating stability over time with correlation coefficients between 0.72 and 0.82. Overall, the results suggest that the scales are reliable instruments within each domain, providing a solid basis for their application in evaluating various dimensions of patient satisfaction and experience. Validity testing is much more limited, although results are satisfactory overall. Regarding dimensionality, the number of dimensions and their meaning vary from one study to another, although interpretable factors or dimensions explaining a relevant amount of variance are found.
Patient involvement emerged as a fundamental pillar in the development of various scales aimed at evaluating patient satisfaction and experiences in CKD treatment. However, patient involvement occurred after the initial proposal of items. Overall, the results of this review reaffirm the importance of continuous patient involvement to refine and develop instruments, indicating that more efforts should be made to engage patients in the design of measurement instruments.
The review suggests that tools such as IEXPAC, the CQ index, and the PREM, which focus more on patient experience, seem to provide a more comprehensive view of the various stages of care in the CKD journey. Additionally, it points out that prioritizing patient experience over satisfaction (without completely excluding the latter) goes hand in hand with the evolution of healthcare assessment, ensuring a more exhaustive and patient-centered evaluation in the CKD journey. Building upon the limitations of the reviewed instruments, this thesis embarks on an empirical study that combines quantitative and qualitative methods and includes PJM.
PATIENT JOURNEY MAPPING This study follows PJM guidelines to measure patient experience with CKD, identifying specific "touchpoints" between patients and the healthcare system using a focus group, delving into the care experience throughout the CKD journey through semi-structured interviews conducted alongside a self-reported questionnaire. Due to its position as the only patient experience instrument developed and validated in Spain, this study will use the IEXPAC questionnaire, which provides information on key aspects of healthcare from the patient's perspective, such as respect for the values, preferences, and needs expressed by the patient; provision of information and education; access to care; involvement of family and friends; and care coordination (Mira et al., 2016).
Method Participants: Adults over 18 years old diagnosed with CKD. The sample consists of patients attending the nephrology services of a hospital in Valencia (Spain). 110 adults aged between 33 and 85 participated in the study; more than half were men (67%) and the rest were women. Phase 1 had 24 participants, and phases 2 and 3 had 86.
Phase 2. IEXPAC: A convenience sample of 86 patients was recruited during routine appointments at the hospital. 59 were men (68.6%) and 27 were women; participants were between 32 and 85 years old and were in different medical stages of the disease. For consistency and considering age and limitations (e.g., visual problems or mild cognitive limitations), a researcher who had no prior contact with the participants read the IEXPAC items to all patients, and explanations of the items were provided if necessary.
Phase 3. Semi-structured interviews: After completing the IEXPAC, the 86 patients voluntarily participated in semi-structured interviews aimed at exploring the healthcare experience at each of the "touchpoints" identified in phase 1. A member of the research team conducted the interviews, which took place at the hospital and lasted between 30 and 40 minutes each. Participation was voluntary. Participants received a full explanation of the study and provided written consent in all phases. The Hospital Clinical Research Ethics Committee reviewed and approved the study.
Instruments Patient Journey Mapping (PJM): This study used the three main steps of Grau's guidelines (Corral, 2018) to effectively create and use PJM: 1) defining the audience, 2) conducting qualitative focus groups and identifying "touchpoints," and 3) gathering relevant information at each touchpoint.
Instrument for Assessing the Experience of Chronic Patients (IEXPAC): This instrument was proposed by Mira et al. (2016) and consists of 11 items related to patients' experience over the previous six months, plus an additional item for patients hospitalized in the last three years. Our study excluded this additional item, as none of the participants were hospitalized for complications directly related to CKD.
Semi-structured interview: An interview guide based on the work of Schell et al. (2012) was designed to gather information and assess the healthcare experience of CKD patients at each touchpoint. Probing questions were formulated based on the responses to initial questions. Interviews were audio-recorded and transcribed; field notes were taken immediately after each interview.
Analysis Focus groups: All participant responses were recorded and grouped into categories, which were termed "points of contact" defined and sequenced based on participant conversation. One researcher served as a moderator during the group discussion and presented participants with a preliminary list of mentioned points of contact. Participants unanimously decided which they considered most important in their care experience.
IEXPAC: Means and standard deviations of the 11 IEXPAC items and the total IEXPAC score were calculated. Due to its low reliability, the three initially proposed dimensions were not differentiated. To identify differential experience among different points of contact, a series of one-way ANOVA tests were conducted to compare item means and mean IEXPAC scores.
Interviews: Atlas.ti (Version 7) was used to facilitate text storage, coding, and data retrieval in interview transcripts. Transcripts were analyzed line by line to search for concepts, themes, and ideas to develop a preliminary coding scheme. An inductive process was followed to label initial themes and group them into higher-order themes. Two other researchers reviewed the coding scheme, and any disagreements on individual coding choices were resolved through discussion.
Results Phase 1: Using PJM to Identify "Points of Contact" Four points of interaction directly related to the renal disease trajectory were identified: Renal Disease in Outpatient Clinic (OC), Renal Education Program for Patients (PREP), Hemodialysis (HD), and Peritoneal Dialysis (DP). Among participants in focus groups, 20.83% were in OC, 29.16% in PREP, 20.83% in DP, and 29.16% in HD.
Phase 2: IEXPAC Results Among participants in Phases 2 and 3, the distribution was as follows: 8.6% were in OC, 26.74% in PREP, 37.20% in HD, and 24.41% in DP.
Overall IEXPAC Score and Mean Differences of Points of Contact: The overall score of the IEXPAC scale was 5.57 ± 1.07. Before comparing differences in total IEXPAC scores among different points of contact, normality of data distribution and homoscedasticity were checked. Although scores were normally distributed according to the Shapiro-Wilks test (p > 05), the assumption of variance homogeneity was not met, so the robust Welch-Satterthwaite test was applied. Results showed a significant effect among points of contact (Welch's F (3, 30.10) = 47.87, p < 0.05).
Mean Differences between IEXPAC Item Scores and Points of Contact: Regarding differences in item scores, the robust Welch-Satterthwaite test showed significant differences for all items except for item 7. The pattern of differences between points of contact varied for different items.
Phase 3: Semi structured Interviews After qualitative analysis using Atlas.ti 7, a total of seven themes and 16 subthemes related to patients' care experience across different points of contact emerged. Main themes were (1) information and education about renal disease, (2) care coordination, (3) family involvement, (4) empathy and patient orientation by professionals, (5) peer support, (6) high-quality dialysis, and (7) patient training.
Common Themes across All Points of Contact Information and education about renal disease. 72.09% of patients with renal disease expressed the need for information on disease-related aspects (diagnosis, health changes monitoring, recommendations on physical activity and dietary habits, medication) and factors related to disease progression (psychosocial changes, dietary changes, treatment modality, transplant possibilities). Patients described negative experiences due to lack of information or overwhelming nature of information. Positive experiences were related to adequate and manageable amounts of information.
Care coordination. 51.16% of patients with renal disease consistently mentioned the importance of healthcare professionals sharing information to guide the provision of safe and adequate care. They highlighted aspects such as organization of healthcare activities (e.g., medical appointments, transportation coordination, healthcare planning activities, referrals) and adaptation to their needs and time availability.
Family involvement. 65.11% of patients with renal disease stated that their experience was marked by instrumental and emotional support from their loved ones. They emphasized the importance of having them for daily activities. According to patient reports, being accompanied by family during routine medical visits helps them understand information and recommendations from the treatment team.
Empathy and patient orientation by professionals. 69.77% of patients with renal disease described and valued their care experience in terms of a warm and understanding attitude and patient-oriented approach by healthcare professionals, where nurses' humane treatment was affectionate, responsive, and personalized. Participants reported fewer positive experiences regarding physicians, who often provide disease-focused rather than patient-focused service, focusing on laboratory results and physical considerations.
Unique Themes Based on Points of Contact Peer support program - Renal education. 60.86% of PREP patients expressed that peer support during the Renal Education Program fosters a sense of belonging and connection with others facing similar challenges. Additionally, PREP group patients highlighted the importance of having an expert patient who can serve as a mentor to discuss coping strategies and talk about life after starting dialysis.
High-quality therapy - Patients on hemodialysis. 56.25% of patients in the HD group mentioned their needs and expectations for good machine performance and safety protocols. They also emphasized the importance of receiving care beyond physical health, involving pleasure and comfort.
Patient education - Patients on peritoneal dialysis. 66.67% of patients with PD consider education to be the most important aspect of their care experience, as it typically requires manual skill and the ability to self-care at home. Patients expressed that receiving clear information and step-by-step details of the process, along with appropriate teaching tools, enhanced the learning experience. Patients also mentioned that establishing a good relationship with PD nurses facilitates training success.
The results obtained from the analysis of focus groups revealed that evaluation systems should differentiate between the four main points of contact identified by patients with CKD when assessing the experience. The results of the IEXPAC questionnaire also support the need to differentiate between the four points of contact.
Regardless of the point of contact, patients do not perceive that healthcare and social care services act synergistically to improve their well-being and quality of life, nor are they informed about other healthcare and social resources they can turn to for better coping with their challenges.
Individual themes corresponding solely to each of the three interaction points in our study suggest that there are specific patient needs, goals, and expectations depending on the point of contact that cannot be evaluated with surveys.
Although this study has significant strengths, it also has several limitations. First, the sample size was limited and came from a single hospital in Spain, limiting the generalizability of the results. Results and conclusions should be validated by future research using larger samples and in different cultures. Second, data on other measures of care quality, such as clinical effectiveness and patient safety, were not collected as the study focused on identifying the experience of patients with CKD. These three pillars of care quality should be integrated into future research, and the relationship between identified improvement areas should be analyzed. Finally, the low internal consistency of the IEXPAC in the sample could pose a limitation, but it was overcome by comparing variables at the item level rather than at the dimension level.
The results provide valuable information for healthcare policymakers to promote quality improvement through outcome monitoring and the design of programs aimed at improving these care areas. Healthcare policymakers should consider aspects such as family and peer support, humanized treatment, and care coordination when designing programs to enhance the quality of care.
INTEGRATION The combination of findings from the systematic review and the PJM outlines key principles for assessing the patient experience within the context of CKD.
Develop evaluation methods capable of collecting data from a wide and diverse range of CKD patients continuously and longitudinally. This point leads to proposing the application of questionnaires as one of the most effective ways to reach all types of patients and to collect large amounts of data efficiently.
Develop evaluation tools that achieve a balance between common questions applicable to all stages of CKD and specific questions tailored to specific phases or points of contact of the disease. This nuanced approach recognizes the dynamic nature of CKD and the various experiences that patients go through along the disease trajectory. Incorporating common questions in CKD evaluation tools ensures a basic set of questions that capture universal aspects of the patient experience and promotes comparability of key issues common to different types of CKD patients.
Develop tools that emphasize the importance of patient involvement in refining evaluations. This is a fundamental principle for achieving a holistic assessment of patient-centered care and for promoting continuous improvement. Both studies highlight the fundamental role of patients as active collaborators in the development of instruments used to measure experiences within the context of CKD.
The application of holistic questionnaires with common themes, yet also tailored to relevant touchpoints, represents a paradigm shift in assessing CKD care, providing continuous and dynamic evaluation crucial for improving quality of care. These questionnaires offer a transformative approach that captures dimensions of the patient experience across various stages and touchpoints, ensuring healthcare practices remain patient-centered, considering evolving needs based on CKD stage. Developed with patient input, these questionnaires enable comprehensive exploration of diverse aspects of CKD care at different touchpoints.
CONCEPTUAL MODEL Fundamental Concepts and Guiding Principles Based on the general themes and recommendations outlined by Wolf et al. (2014) in their 14-year meta-analysis of patient experience, as well as the implications for a holistic assessment of patient-centered care and continuous care improvement, our conceptual model follows 8 principles:
1. Diversity and Dynamics 2. Balanced Approach 3. Patient Involvement 4. Continuity of Care 5. Focus on Expectations 6. Alignment with Patient-Centered Care 7. Individualized Care 8. Comprehensive Understanding Application The proposed phases for the scale are: Patient involvement in the review of the conceptual model and item generation, Expert review and validation, Pilot testing, and Refinement and finalization in accordance with best practices for the development and validation of scales for health, social, and behavioral research (Boateng et al., 2018), in addition to adaptation to the context of CKD (chronic kidney disease).
Phase 1: Patient Involvement A diverse group of CKD patients representing various stages and touchpoints should be invited to participate. Including patients from different stages of CKD (outpatients with advanced kidney disease, patients from the kidney education program, hemodialysis, and peritoneal dialysis; from stages 1 to 5) ensures comprehensive knowledge of the entire CKD spectrum.
Phase 2: Expert Review and Content Validation Identify relevant participants: individuals with expertise in the field of patient experience evaluation and questionnaire development should be invited to participate (Devellis 2012; Morgado et al., 2018), including healthcare professionals (e.g., nephrologists, nurses). Experts will rate each item based on its relevance, clarity, comprehensiveness, and language appropriateness.
Phase 3: Pilot Testing with Another Sample of CKD Patients in Different Stages The test will initially assess the psychometric quality of the items and discard those that are not suitable. The instrument should be provided to participants, encouraging them to give their opinion on the clarity of the instructions and the instrument overall, and the relevance of the items.
Phase 4: Refinement and Finalization Necessary modifications and adjustments are introduced to improve clarity, relevance, and comprehensibility based on the information obtained from the pilot tests. Ambiguous or confusing information is rephrased, and items may be excluded based on their importance and suitability. The iterative nature of this refinement process allows for continuous improvement, ensuring that the instrument meets the changing needs and expectations of CKD patients. The refined instrument is then subjected to a final validation process with a larger sample to assess its psychometric properties, such as reliability and validity.
The final part of the application of the conceptual model involves periodic administration of the questionnaire and the evaluation of the information provided by it. This phase represents the transition from the development of the instrument to its practical application, focusing on the integration of the patient experience evaluation tool into regular care practices. The distribution of the questionnaire should be done periodically. A reasonable timeframe is proposed: every four months. This strategic schedule is adapted to the chronic nature of CKD (chronic kidney disease), capturing dynamic changes in patient experiences over time without being overwhelming. Ideally, the survey should be conducted online and cover experiences from the past four months; however, considering that some patients may have difficulties due to technical or educational limitations, it is essential to aid those who need it.
The following steps should be taken before applying the survey:
Training and Education: Healthcare professionals involved in administering the patient experience evaluation instrument will receive comprehensive training, including an orientation on the purpose of the instrument, the application procedures, and the importance of maintaining a patient-centered approach.
Integration into Clinical Workflow: To facilitate proper application, the instrument will be integrated into the existing clinical workflow. This ensures that the evaluation becomes a routine part of patient interactions and is not perceived as an isolated activity.
Patient Participation: Patients actively participate in the application process. Patients will be informed about the purpose of the evaluation, its voluntary nature, and the confidentiality of responses.
Periodic Evaluations and Updates: The patient experience evaluation instrument will undergo periodic evaluations to assess its effectiveness. Regular updates may be made to ensure that the instrument continues to meet the evolving needs of patients.
Data Analysis and Utilization: Data collected on patient experiences will be systematically analyzed to obtain meaningful insights. The results will serve as a basis for quality improvement initiatives and help healthcare organizations identify strengths and areas needing attention.
This proposal for a conceptual model to evaluate patient experience across the CKD spectrum represents a significant step towards patient-centered care and continuous improvement in healthcare delivery. The carefully delineated dimensions, derived from a synthesis of findings from a systematic review and a mixed-methods study incorporating the PJM (Patient Journey Mapping), lay the foundation for developing a comprehensive and contextually relevant evaluation tool.
General Discussion The research findings have key implications for practical improvements in patient care in the context of CKD. The proposed conceptual model, based on a comprehensive understanding of CKD patients' experiences, facilitates the development of a more patient-centered approach, in line with the approach adopted by the healthcare literature. This model encourages healthcare professionals to adapt interventions and support services to the changing needs and preferences of patients in different stages of CKD, aiming to foster a more responsive and personalized healthcare experience.
Our research emphasizes care coordination as a key factor influencing patient experience, consistent with the literature on the importance of coordinated and integrated healthcare delivery systems (Agency for Healthcare Research and Quality, 2018). Advanced stages of CKD particularly require effective care coordination, suggesting the need for health systems to prioritize patient care activities, such as coordination among various healthcare services, dialysis centers, and transportation.
The successful implementation of the PJM in a Spanish sample highlights the adaptability and effectiveness of this methodology in capturing diverse experiences, including cultural nuances. Therefore, healthcare organizations might consider incorporating the PJM as a dynamic and responsive tool for evaluating patient experience throughout the CKD journey and other chronic diseases. Additionally, healthcare organizations should actively involve patients in the development and validation of instruments to ensure that the resulting tools remain relevant, culturally appropriate, and responsive to the changing needs and preferences of patients with chronic diseases.
Patient experience emerges as a key factor influencing treatment adherence, engagement, and overall satisfaction with healthcare services, making it imperative to integrate these insights into healthcare practices. Incorporating these practical implications can significantly enhance patient-centered care. This aims to cultivate a more comprehensive and adaptable approach to addressing the diverse needs of individuals facing the complex challenges associated with CKD.
Limitations In Study 1, during our review of grey literature, we focused on information from two sources (the websites of the European Kidney Patients' Federation and the National Kidney Foundation); this limited exploration might have overlooked potentially relevant studies or scales used in other sources of grey literature. The strict inclusion criteria for scales, emphasizing instruments that underwent development and validation processes, could result in the exclusion of emerging scales or tools that could offer valuable insights and significantly contribute to the study of patient experience in the context of CKD.
In Study 2, the PJM presents certain limitations worth considering, such as the relatively small sample size (N=86), particularly in the early stages of the disease (N=10), or the suboptimal internal consistency of the Chronic Patient Experience Evaluation Instrument (IEXPAC), especially for some dimensions. Additionally, the predetermined number of touchpoints in the study introduces a possible limitation regarding the comprehensiveness of the patient journey. The limited number of touchpoints might overlook crucial phases or interactions in the CKD care pathway, limiting the analysis of patient experience and all its nuances.
Despite these limitations, it is essential to recognize the unique contributions of each study. The systematic review not only outlines the strengths and weaknesses of different scales but also highlights significant knowledge gaps and lays the groundwork for future research. On the other hand, the empirical study reveals the qualitative complexities of CKD patients' experiences. The information obtained, despite the limitations, provides valuable qualitative data that can complement and enrich the analysis of the CKD patient journey.
