Perspectives on Quality of Care in Kidney Transplantation: A Semistructured Interview Study.

BACKGROUND: There is currently no agreement as to what constitutes quality transplant care, and there is a lack of consistency in the approach to assessing transplantation quality. We aimed to ascertain the views of patients, clinicians, and program administrators about quality care for kidney transplant patients.
METHODS: Semistructured qualitative interviews were conducted with 20 patients, 17 physicians, and 11 program administrators. Transcripts were analyzed using inductive thematic analysis.
RESULTS: We identified 8 themes: access to treatment (standardized transplant referral, lengthy transplant evaluation process, lengthy living donor evaluation); accessibility of services (alternative access options, flexible appointment availability, appropriate amount of follow-up, barriers for accessing care); program resources (comprehensive multidisciplinary care, knowledgeable staff, peer support groups, educational resources, patient navigators/ advocates); communication of information (taking time to answer questions, clear communication about treatment, communication tailored to patients, health promotion and illness prevention); attitude of care providers (positive and supportive attitude, patient centered care); health outcomes (freedom from dialysis, Long-term health, short-term health, fear of infections); patient satisfaction (returning to normal life, patient satisfaction with care); and safety (reducing infection risk, quick response to complications, patient health status on the waitlist).
CONCLUSIONS: There is a need to move beyond basic clinical outcomes and focus on increasing ease of access, the patient-provider relationship, and outcomes that are most important to the patients.

The global prevalence of chronic kidney disease is estimated to be between 11% and 13% of the population,[1] and once this disease progresses to end-stage kidney disease, transplantation is the preferred treatment since it improves quality of life, prolongs survival and is less costly compared with dialysis.[2-4] Significant improvements have been made in survival after kidney transplantation; however, the process is far from optimal, and improvements are still needed to improve the patient experience and quality of life outcomes. In addition, we currently do not know the best approach for determining whether a transplant program is delivering high-quality, safe care.[5-8] A recent systematic review found no agreement as to what constitutes quality transplant care, and there is a lack of consistency in the approach to assessing transplantation quality.[9] As such, we conducted semistructured interviews with key stakeholders (patients, clinicians, and program administrators) to ascertain their perspectives of quality transplant care.

MATERIALS AND METHODS

Design

We used the Consolidated Criteria for Reporting Qualitative Heath Research to guide the writing of this article.[10] Semistructured qualitative interviews were conducted with key informants on quality of care for kidney transplantation using an interview guide (SDC, http://links.lww.com/TXD/A123 Materials and Methods 1). The guide was developed from a literature review and was pilot tested with 2 clinicians before the study. This study received research ethics board approval (OHSN-REB protocol ID 20150796-01H), and consent was obtained from all participants. K.B., a research associate with no previous relationship with the participants, conducted the interviews between July and December 2016. Interviews were conducted in person in a private room or on the phone in a private office. All interviews were audio-recorded with participant consent, and notes were made during the interviews.

Recruitment

Eligible participants were men and women aged 18 years or older who fit into 1 or more of the categories of key informants: (1) patients who have had (or waiting to have) a kidney transplant; (2) clinicians who work with kidney transplant patients (physicians, nurses); and (3) program administrators (senior staff working at hospitals or organ donation/transplant organizations). Patients were identified through convenience sampling by a transplant nurse at The Ottawa Hospital Renal Transplant Clinic. Interested patients provided written consent to be contacted by the research coordinator, who contacted them by phone or email to consent them into the study. Although our intent was to include some patients waiting for a transplant, our final sample included only posttransplant patients. Clinicians and program administrators were recruited through a targeted email across Canada, requesting that interested participants contact the research coordinator. Participants were offered a US $30 gift card to a coffee shop or a bookstore at the end of the interview in recognition of their time for participating.

Data Analysis and Synthesis

Interviews were transcribed verbatim by a qualified professional and checked for accuracy by KB and EE. Interviews were imported into NVivo version 11 (QSR international) to facilitate qualitative data analysis. Before coding, KB read each transcript and selected the key sections of text (utterances) that reflected the context of the interviews and captured the meaningful concepts. Utterances were used to ensure consistent sections of the text were coded by both analysts.[11] Two team members (K.B. and E.E.) independently coded the transcripts using inductive thematic analysis,[12] whereby the data were used to guide the development of the coding scheme rather than trying to fit the data into a preexisting framework. The coding started with the analysts familiarizing themselves with the data by reading through the entire data set at least once. Next, the analysts read the first 4 transcripts line by line and coded all utterances, after which the analysts met to determine a coding scheme (comprised of codes, definitions of the codes, and examples of quotations) by consensus, which was then used to analyze the remaining the transcripts. A separate coding scheme was developed for the patient transcripts, and the clinician and program administrator transcripts. After every 3 or 4 transcripts were coded, the analysts met to review their coding and seek consensus. Coder reliability was assessed using the function on NVivo; if the interrater agreement was less than 75%, the rationale behind the coding selection was discussed until a consensus was reached. Codes were modified and new codes were added as needed. A log was kept to ensure that each code remained consistent and to establish a decision trail that could be reviewed if necessary. The data were coded for as many potential concepts as possible, and utterances were coded into as many different concepts that they fit into. The coded data were then grouped into similar themes and subthemes by KB, which was reviewed by E.E., and feedback was incorporated into results. In addition, we collected potential quality metrics that discussed within the context of each theme. The subthemes and metrics were categorized into the 6 domains of healthcare quality: access, equitable, patient-centered, efficiency, safety, and effectiveness.[13,14]

RESULTS

Sample Characteristics

Twenty patients, 17 physicians, and 11 program administrators participated in the study. One of the program administrators was also a clinician, and 9 of the clinicians also had major administrative roles within their organizations. All patients were kidney transplant recipients (50% had received living donor kidneys) and were a median of 5 years posttransplant (range, 6 months to 20 years). For those patients who received a deceased donor transplant, the median waiting time to their transplant (as reported by the patient) was 1.5 years (range, 10 days to 3 years). The physicians had been working in nephrology or transplantation for a median of 16 years (range, 5-40 years). The program administrators had a median of 8.5 years of experience (range, 0.5-26 years). For simplicity, physicians and program administrators will be referred to as health professionals (HPs). Health professionals were from the following provinces: Alberta (n = 7), British Columbia (n = 2), Manitoba (n = 1), Newfoundland (n = 1), Nova Scotia (n = 3), Ontario (n = 11), Quebec (n = 1), and Saskatchewan (n = 2), and types of centers: general hospitals (n = 2), teaching hospitals (n = 21), and organ and tissue donation agencies (n = 5). Interviews were on average 27 minutes (range, 13-44 minutes), 2 interviews were conducted face-to-face, and the rest were conducted on the phone.

Themes

We identified 8 major themes: (1) access to treatment, (2) accessibility of services, (3) program resources, (4) communication of information, (5) attitude of care providers, (6) health outcomes, (7) patient satisfaction, and (8) safety (Appendix). Potential quality metrics that were discussed within the themes are summarized in Table 1. The healthcare quality domains identified within each subtheme are shown in Figure 1. Additional quotations in support of the subthemes are provided in Table S1, http://links.lww.com/TXD/A123. Five additional subthemes were identified (see SDC, http://links.lww.com/TXD/A123 Materials and Methods 2) but were not included in the summary of the results because they do not relate to measureable attributes for individual transplant programs given that they are inherent issues within the field of transplantation and could not be addressed at the program level.

TABLE 1

Proposed metrics by theme

FIGURE 1

Healthcare quality domain within each subtheme.

Access to Treatment

Standardized transplant referral: HPs remarked that there was no standardization as to when patients should be referred for transplant evaluation, which may influence the time it takes for a patient to receive a transplant, or result in lost opportunities for preemptive transplants. Disparities exist between dialysis centers, and possibly between provinces, with regards to when physicians discuss the option of transplant with patients. Lengthy transplant evaluation process: Patients were frustrated with the length of time for the transplant eligibility evaluation process. Although they recognize that external factors contribute to the wait times, they still found the process “scary.” Health professionals found the transplant evaluation process to be time-consuming and “onerous” at some centers; whereas others felt that their programs had efficient systems to facilitate the work up (ie, fast-track spots in diagnostic imaging). Lengthy living donor evaluation: Patients and HPs expressed frustration with the prolonged process for evaluating potential living donors. Donors often incur unnecessary costs during this process, and it is a “burden for the donor and sometimes they don’t continue on to donate as a result.”

Accessibility of Services

Alternative access options: Accessing care in-person at transplant centers was not always feasible, and it was important for patients to have alternative access options, such as Telehealth communication. Patients who live outside of major urban centers value having blood work done at local facilities rather than traveling to transplant centers. Health professionals also felt that satellite clinics were better able to accommodate patients who lived far away. Patients and HPs both expressed value in the ability to call the clinic and speak directly to a care provider when questions arose. Flexible appointment availability: Flexibility in clinic schedules helped patients maintain a sense of autonomy, while HPs felt that offering clinic appointments 7 days a week could help improve access for patients, while maximizing resource use. The ability to make appointments at the last minute eased feelings of worry for patients, and HPs recognized the benefit of seeing patients in real time, rather waiting extended periods of time to book appointments or reschedule missed appointments. Appropriate amount of follow-up: Patients appreciated the extensive posttransplant follow-up that they received, and having adequate time with the clinicians at these appointments. However, some patients questioned whether such thorough follow up with the nephrologist was always necessary, particularly if they are not experiencing any problems. Health professionals felt that the best care model has yet to be determined (eg, visit frequency, type of provider), although it is assumed that more follow-up translates into better outcomes. Barriers for accessing care: Barriers to accessing transplantation identified by HPs include the center’s eligibility criteria/level of risk tolerance (eg, comorbidities, highly sensitized patients, age), as well as patient socioeconomic status, culture, and health literacy. For patients, it was important to be able to communicate with providers in their own language, and they were concerned that new arrivals to Canada, or those unable to speak English or French would be overwhelmed by the process.

Program Resources

Comprehensive multidisciplinary care: Having multidisciplinary care available within the transplant program gave patients a sense of well-coordinated, excellent care. However, some patients spoke of the need for additional resources for the emotional/psychosocial side of care. Health professionals also praised the multidisciplinary care approach; a program that treats the whole patient, and not just the kidney by having direct access within the clinic to various allied health professionals (eg, dieticians, social workers, and psychologists). Knowledgeable staff: Both patients and HPs recognized the importance of having nurses and physicians that are formally trained in and experienced in working with transplant patients. One HP remarked that housing their patients outside the transplant unit led to a drop in the quality of care. Having an adequate number of staff to serve the volume of patients was also noted by HPs. Peer support groups: It was important for patients to be able to speak with other transplant patients, to gain insight and address concerns which cannot be addressed by clinicians. Health professionals thought that peer support groups allowed patients to connect with people in similar situations, and provided someone else for patients to “reach out to”. Educational resources: HPs spoke to the value of providing extensive education to the patients and their families, before and after the transplant, using both in-person education sessions and reading material. While patients appreciated the reading materials they were provided, 1 patient expressed that a potential downside is that there is no guarantee that the patients would read the information, or whether they understood what was read. Patients offered the highest praise for the group information sessions where the different disciplines spoke, and patients were given the opportunity to ask questions. Patient navigators/advocates: An area identified as lacking was the availability of patient navigators or advocates. Health professionals felt that having someone help patients navigate the healthcare system would facilitate getting patients on the waiting list. One patient explained how they had to advocate for their own care, and worried that other patients might experience difficulties in doing so. In addition, patient advocates could help patients approach and engage potential living donors.

Communication of Information

Taking time to answer questions: The staff’s willingness and ability to answer all of their questions was important to patients. Having “no questions unanswered” made patients more comfortable with the process, and left lasting positive impressions. Clear communication about treatment: Patients felt well informed going into the transplant; their treatment options, the plan of treatment, and the aftercare were all well explained, and they appreciated that there were no surprises. In contrast, HPs felt that there needs to be better communication of the risks and benefits of the different treatment options, as many patients do not fully understand the process of a kidney transplantation. Health professionals reflected on the need to reduce unrealistic expectations about transplant; setting clear, realistic outcomes for this treatment could help patients cope posttransplant. Communication tailored to patients: HPs need to be aware that there is sometimes a disconnect between what is said and what the patient understands. The information and communication style needs to be tailored to specific cultures, languages, and education levels to ensure that patients and their families grasp the information properly. Health promotion and illness prevention: Patients noted that the clinic staff is vigilant about reminding patients to wear sunscreen, drink enough fluid, and to avoid people who are unwell, among other good behaviors needed to help prevent complications and promote a healthy lifestyle posttransplant.

Attitude of Care Providers

Positive and supportive attitude: The patients felt that the staff “really care” about them, and valued the staff’s positive and supportive care. Patients mentioned numerous positive traits of the providers, including: caring, willingness to listen, nice, helpful, attentive, supportive, compassionate, friendly, positive, good bedside manner, sympathetic, encouraging, patience, concern, accessible, and understanding. Patient-centered care: For the patients, high quality care encompassed being treated as a whole person; good bedside manner; a more personal approach to care; and receiving 1-on-1 care from the doctor. For HPs, it is important that patients maintain a sense of autonomy, and are engaged in their healthcare decisions over the course of their treatment.

Health Outcomes

Freedom from dialysis: For patients, the most important outcome was receiving a well-matched kidney; one that works, lasts a long time, and ultimately keeps them from returning to dialysis. Patients want longevity out of the graft, with some patients hoping for the graft to last 25 years. Health professionals recognized that the most important outcome from the patient’s perspective was freedom from dialysis. However, given the high rates of success, they admitted that it is important to look beyond graft and patient survival for other worthy measures of quality. Long-term health: In addition to patient and graft survival, HPs also considered other outcomes, such as readmission rates, cardiovascular disease, malignancies, and infections, to be important. In contrast, it was noted that patients are so focused on their transplant, that they are not concerned about cardiovascular disease, even though it is the leading cause of death for these patients. Short-term health: HPs thought that short-term metrics which provide more immediate feedback (eg, surgical complications, length of stay, etc.) can help programs ensure that their processes are improving. Although other short-term outcomes, such as acute rejection, may also reflect components of the patient evaluation process or the aggressiveness of the center in case selection. Fear of infection: For many patients, their biggest safety concern was the risk of infections, either hospital acquired infections or posttransplant viruses. Health professionals were primarily concerned with infection transmission from the organ to the recipient, but were also concerned with posttransplant viral infections.

Patient Satisfaction

Returning to normal life: For patients, one of the best measures for the success of the transplant is how closely your life “mirrors what you consider to be ideal.” Patients discussed having more energy, and participating in activities such as traveling, working, and exercising. Patients spoke of getting back to a “new normal”; the expectation was not necessarily that they would have an equal quality of life as before, but that their quality of life would be as close to normal as possible. Health professionals also listed improved quality of life, and “returning to normal”’ (eg, travelling, going back to work, exercising, having a family, and a liberalized diet and fluid intake) in their definition of a successful transplant. Patient satisfaction with care: Although most HPs reported that their institutions were not measuring patient satisfaction, they believed it should be measured. Health professionals were also interested in the patient's overall experience of their care: whether patients felt prepared, whether they received sufficient education, and whether their expectations were met.

Safety

A few HPs suggested that there may not be a need for transplant specific safety metrics because established hospital safety metrics may be sufficient. In addition, many HPs mentioned short- and long-term outcomes as potential measures of safety. Nonetheless, 3 safety subthemes emerged from the data. (1) Reducing infection risk: Patients appreciated the hospital's efforts to keep them safe by separating them from other patients through the use of private rooms after surgery and a separate area within the blood lab for their regular follow up tests. Patients were also impressed with the cleanliness of the hospital and thought it was important that the hospital took sanitation and sterilization of the rooms very seriously. Some patients reported needing to intercede when staff did not follow proper protocols for interacting with transplant patients. (2) Quick response to complications: Patients appreciated being kept informed about changes to their health, and were impressed when providers were able to quickly identify and respond to complications, such as changes in blood work. (3) Patient health status on the waitlist: Some HPs suggested that changes to a patient's health while on the waitlist could provide valuable information about the quality of care patients are receiving from the program. However, high waitlist mortality rates may indicate that sicker people are being given the opportunity of receiving a transplant, and therefore adjusting for the patient health status is important.

DISCUSSION

Quality of care is a multifaceted concept. Although transplantation is the best treatment option for patients with kidney failure, the quality of care received by patients may differ depending on their institution. Our study revealed detailed insights into quality of care in transplant programs from the perspectives of patients, clinicians, and program administrators, and numerous themes were identified from which quality indicators can be developed.

Our results suggest that there are still notable barriers for accessing care in a timely manner, particularly in the early stages of the care continuum. Although the scarcity of organs is the main barrier to receiving a transplant, this work highlighted discrepancies with regards to referral and evaluation times, suggesting the need to establish benchmarks for these processes. Furthermore, our study indicates that the convenience of care is a key element of accessibility. Patients desire care that is as minimally disruptive to their lives as possible with ready access to care providers by telecommunications and/or local clinics for routine follow-up. Creating quality standards for transplant programs with regard to how patients access care providers would allow for the use of structure and process metrics to evaluate whether programs are providing care that is minimally intrusive to their patients.

The interpersonal interactions between care providers and patients emerged as essential to quality transplant care. Prime examples of these important interactions include clear communication of care plans, communicating at an appropriate level for their patients, and having sufficient time to answer questions. Whether patients are given information that is tailored to meet their needs and delivered at appropriate times in the care continuum could be monitored through a combination of process metrics (eg, patients are provided with written and verbal discharge instructions) and patient-reported experience measures (PREMs) (eg, do the patient’s feel that information was communicated clearly). Indeed, patient-centered and access were the 2 quality domains that were identified the most frequently within the subthemes.

We found that the availability of a wide range of resources was crucial for a quality transplant program. Comprehensive multidisciplinary care that was structured to provide easy access to allied health professionals was highly valued. Other important resources for quality transplant care included peer support groups, patient navigators, experienced care providers, and sufficient educational materials. Structure indicators (eg, the availability of dieticians or education sessions) and process indicators (eg, the percentage of patients who were given the option of speaking with a pharmacist at every follow-up visit) could be developed to help ensure that programs are meeting benchmarks for care.

Our interviews identified other components of high-quality care that would best be measured using patient-reported outcome measures (PROMs) or PREMs, such as the supportive environment provided by the staff. However, there are many challenges associated with measuring PROMs and PREMs, including the need for properly translated and validated tools, the feasibility of the instrument, staff training in collecting the data, and the financial burden of data collection and analysis.[15] Standardized PROMs and PREMs have yet to be established for kidney transplantation, however, a consensus meeting on instruments for renal registries recommends the following PROMs: the SF-12 and the EQ-5D-5L as generic instruments, and the Kidney Disease Quality of Life Instrument (KDQOL)-36 for disease-specific outcomes.[15-18] Furthermore, a systematic review found strong evidence supporting the KDQOL-36 for predialysis patients; moderate and strong evidence for the KDQOL-36 and KDQOL-short form for dialysis patients; and strong evidence for the End Stage Renal Disease-Symptom Checklist Transplantation Module in transplant recipients.[19]

In our results, patient experience was a key attribute of quality, which differs substantially from published quality indicators for chronic kidney disease[20] and dialysis facilities.[21,22] The quality indicators used in chronic kidney disease have focused on screening and diagnostic measures, treatment targets, and process metrics.[20] Meanwhile, the measures of quality for dialysis facilities focus mainly on clinical performance measures (clinical outcomes, treatment targets, and process metrics) and the facility's reporting of these measures.[21,22] Reporting PROMs and PREMs alongside patient survival and laboratory values would provide the best assessment of overall quality of care of a transplant program, and is the driving force behind Nissenson's patient-focused “quality pyramid” for kidney failure.[23] The foundation of the pyramid captures biochemical data (eg, hemoglobin), followed by intermediate clinical outcomes (eg, fluid management), measures of effectiveness (mortality, hospitalization, and patient experience), and at the top is health related quality of life.[23] The quality indicators currently used for dialysis facilities[21,22] and chronic kidney disease[20] align well with the bottom 2 layers of the pyramid, meanwhile, a number of the themes identified in this study represent the top 2 tiers of this quality paradigm. Incorporating metrics from all levels of the quality pyramid will likely represent the best way to monitor real-time program performance.

The strengths of this study are its exploration of quality of care for kidney transplant patients across a broad range of perspectives, including patients, physicians, and program administrators. The physicians and program administrators were recruited from across Canada and encompassed diverse roles from various institutions. Interviewer training included orientation to the study and practice interviews. The interviews were coded by 2 individuals, and all discrepancies were resolved by a consensus discussion between the 2 analysts.

Study limitations relate to the sample. Most of the patients were recruited from 1 center, which may have introduced an element of bias, nonetheless, we feel that a substantial number of topics/ issues were identified and discussed. In addition, all of the patients were transplant recipients (none of the patients was on the waiting list at the time of the study); however, this ensured that the patients had experienced all the different aspects of care from referral to the posttransplant follow-up. The sample did not include any transplant surgeons, which may have contributed to the limited discussion about the quality of the transplant surgery. Finally, we only included Canadian participants, which may reduce the generalizability, however, we feel that most of the elements identified represent important components of quality of care, regardless of the type healthcare system.

In conclusion, quality transplant care is multidimensional and encompasses the structure of the program, clinical care processes, the patient experience, and outcomes that are important to patients. Patients are looking for holistic care that improves the quality of their lives, care that minimizes the burden on their life, and caregivers who treat more than just their disease. The findings of this study suggest that there is a need to move beyond basic clinical information, and focus on increasing ease of access, the patient-provider relationship, and outcomes that are most important to the patients.

NEXT STEPS

Our goal is to establish a core set of quality metrics for kidney transplantation. These findings, along with the results from our systematic review,[9] will be incorporating into an online modified Delphi study that aims to identify the metrics that are most important to patients and healthcare providers. After the Delphi survey, we will host a to ensure that the metrics identified as important meet the additional criteria for a good measure outlined by Janakiraman and Eker[24]: (i) easy to define and observe; (ii) amenable to change; and (iii) obtainable from existing or easily collected data.

APPENDIX

Illustrative quotations