Primary care physicians’ perceived barriers, facilitators and strategies to enhance conservative care for older adults with chronic kidney disease: a qualitative descriptive study Free

Abstract

Background

Although primary care physicians (PCPs) are often responsible for the routine care of older adults with chronic kidney disease (CKD), there is a paucity of evidence regarding their perspectives and practice of conservative (non-dialysis) care. We undertook a qualitative study to describe barriers, facilitators and strategies to enhance conservative, non-dialysis, CKD care by PCPs in the community.

Methods

Semi-structured telephone and face-to-face interviews were conducted with PCPs from Alberta, Canada. Participants were identified using a snowball sampling strategy and purposively sampled based on sex, age and rural/urban location of clinical practice. Eligible participants had managed at least one patient ≥75 years with Stage 5 CKD (estimated glomerular filtration rate <15 mL/min/1.73 m², not on dialysis) in the prior year. Participant recruitment ceased when data saturation was reached. Transcripts were analyzed thematically using conventional content analysis.

Results

In total, 27 PCPs were interviewed. The majority were male (15/27), were aged 40–60 years (15/27) and had practiced in primary care for >20 years (14/27). Perceived barriers to conservative CKD care included: managing expectations of kidney failure for patients and their families; dealing with the complexity of medical management of patients requiring conservative care; and challenges associated with managing patients jointly with specialists. Factors that facilitated conservative CKD care included: establishing patient/family expectations early; preserving continuity of care; and utilizing a multidisciplinary team approach. Suggested strategies for improving conservative care included having: direct telephone access to clinicians familiar with conservative care; treatment decision aids for patients and their families; and a conservative care clinical pathway to guide management.

Conclusions

PCPs identified important barriers and facilitators to conservative care for their older patients with Stage 5 CKD. Further investigation of potential strategies that address barriers and enable facilitators is required to improve the quality of conservative care for older adults in the community.

INTRODUCTION

The prevalence of Stage 5 chronic kidney disease (CKD), defined as an estimated glomerular filtration rate (eGFR) of <15 mL/min/1.73 m² for at least 3 months [1], is increasing among older adults, in particular. A subgroup of these patients may not receive dialysis and are managed conservatively without renal replacement therapy (dialysis or transplantation), often exclusively by primary care physicians (PCPs) [2].

Clinical practice guidelines indicate that conservative care is an important treatment option for older adults aged ≥75 years with Stage 5 CKD, especially those who are frail or have multiple co-morbidities [3]. Despite these guidelines, comprehensive conservative care programs, including coordinated end-of-life care [4], remain underdeveloped in many locations [5]. In 2012–2013, the majority (51%) of patients with Stage 5 CKD not on renal replacement therapy were aged ≥75 years in Alberta, Canada [2]. Approximately 40% of these patients were managed independently by their PCPs without consultation from a nephrologist. Whether these PCPs had adequate resources and support to manage these patients is unknown.

Given the unique aspects of caring for patients with Stage 5 CKD and the paucity of evidence about PCPs' experience (i.e. facilitators and barriers to conservative care), particularly in the North American context, we undertook this qualitative study to describe PCPs' perceptions of key barriers, facilitators and strategies to enhance conservative care for older adults with Stage 5 CKD residing in the community.

MATERIALS AND METHODS

We used fundamental qualitative description [6] to develop a comprehensive summary of barriers and facilitators experienced by PCPs when providing care to older adults with Stage 5 CKD managed conservatively without renal replacement therapy. We used the consolidated criteria for reporting qualitative health research (COREQ) as the reporting framework [7].

Participant selection

Participants were identified using a snowball sampling strategy and purposively sampled [8] with maximum variation between PCPs based on sex, age and rural/urban location of clinical practice. Using the snowball sampling approach, we initially contacted individuals (key stakeholders) from family medicine, seniors' health and nephrology via e-mail and asked them to recommend PCPs who potentially met the following eligibility criteria: (i) currently practicing in primary care in southern Alberta with at least 1 year of experience, and (ii) experience managing patients aged ≥75 years with Stage 5 CKD in the prior 12 months. Recommended PCPs were subsequently invited via e-mail, fax and/or telephone to participate in the study. To ensure representation and perspectives of physicians practicing in rural areas, all rural PCPs within southern Alberta that fulfilled the inclusion criteria were also invited to participate. Finally, each potential participant was asked to recommend other potential participants. The University of Calgary Conjoint Health Research Ethics Board provided Certification of Institutional Ethics Review.

Data collection

Individual semi-structured interviews were conducted at a time and by means (i.e. telephone, face to face) that were convenient for each of the participants. An interview guide was developed based on a review of the literature and in consultation with the research team (Supplementary data). Participants were asked to provide their practice characteristics at the beginning of the interview to inform subsequent probing questions. Participants were also asked to provide basic demographic information at the end of the interview. The same person conducted all interviews (H.T.) between January and April 2015. Participant recruitment ceased when data saturation was reached (i.e. when no new concepts emerged from additional interviews) [9]. Interviews were audio-recorded and then transcribed verbatim. Field notes were recorded at the time of the interview and used to inform data analysis and subsequent interviews.

Analysis

Conventional qualitative content analysis [10] was used. This is a method of examining qualitative interview data with the goal of creating a rich description of the phenomenon of interest. The research team members first read the interview data in its entirety to acquire an overall sense of the phenomena of interest. Words that captured key concepts were highlighted to create codes. Initial impressions, thoughts and interpretations were noted. Related codes were categorized into themes and subthemes. The process was reflexive and iterative as continual data collection and data analysis shaped each other (e.g. analysis conducted between interviews influenced subsequent interviews) [6]. H.T. and two research associates conducted the coding in triplicate. The themes were achieved through a series of discussions with the research team.

RESULTS

All but one of the interviews was conducted via telephone. A total of 220 PCPs were approached to participate, of whom 45 responded. Of those that responded, 27 were included, 13 were not eligible, 3 declined participation and 2 responded after data collection had been completed. Saturation was reached during the 24th interview. However, three more interviews were completed to confirm no new concepts would emerge. Those that declined participation did so primarily due to clinical commitment and lack of time. The duration of interviews was ∼30 min.

The majority of participants were male (15/27), aged 40–60 years (15/27), with >20 years of primary care experience (14/27), and practiced in a medium/large population center (18/27) (Table 1). One-third of the participants reported having a practice interest in geriatrics or care of the elderly, and ∼75% of participants managed fewer than five patients in the population of interest in the past 12 months. Overall, 59% of participants indicated that their elderly conservative care patients were co-managed with nephrologists.

We categorized PCPs’ perceptions into three predominant barriers and three facilitators to providing conservative care for older adults with non-dialysis Stage 5 CKD (Table 2). We also identified three potential strategies to enhancing conservative care.

Barriers

Managing patient and family expectations of chronic kidney failure

PCPs identified factors that impacted their ability to manage patient and family expectations of chronic kidney failure including uncertainty of prognosis, fostering acceptance of kidney disease severity and misperceptions about dialysis.

Uncertainty of prognosis

Some PCPs found it challenging to help patients and their family members plan and manage expectations of Stage 5 CKD, particularly as it related to the uncertainty of the patient's life expectancy. Participants indicated that there was a lack of tools that they could use to help predict survival for these older frail adults managed conservatively. This posed a challenge for PCPs, given the difficulties of helping patients and their family members make treatment decisions about renal replacement therapy, and establishing the appropriate expectations of this disease. For example, one PCP said:

I think getting a sense of how much time they have left is hard. I think the challenges for many of us is how do we make the best estimate of life remaining? I mean there aren't very good tools in the context of frailty when it comes to getting a really good sense of what to tell families.

Fostering acceptance of kidney disease severity

Some participants indicated that managing the patients and family members' expectations of kidney failure could be challenging, and that education tools would help foster their patient and family members' acceptance of kidney disease severity. Participants indicated that it is often difficult to help patients and their family members understand the severity of this disease, given that many patients are asymptomatic. For example, some participants believed that patients/family members lacked understanding and acceptance that the disease could cause death and that aggressive intervention would not improve survival or quality of life:

[It] took her and her family quite a bit of time to acknowledge that the situation was palliative … And when she went to hospice … Neither of them really seemed to have the insight into the severity of her illness, or that she was going to die from this.

Misperceptions of dialysis

Participants believed that some patients and family members have false conceptions about what dialysis treatment will and will not do to improve survival and symptoms. Further, some PCPs perceived that patients and their families may not be making rational decisions regarding their kidney disease, that dialysis may be perceived as a life-preserving therapy despite the patient's poor prognosis. For example, one PCP shared this experience: ‘[The husband] wants [the patient] to have dialysis. She doesn't want it. It doesn't make sense…She's been stable for quite a while. She has lots of comorbidities.’ Hence, PCPs perceived these notions to be misperceptions of dialysis. The disparity between expectations and reality required considerable effort to help patients, and their family members, make informed treatment decisions.

Complexity of medical management of patients requiring conservative care

Various factors impacted PCPs' ability to provide optimal medical management, including their ability to provide the best practices in renal care and their ability to integrate multidisciplinary health professionals.

Ability to provide the best practices in renal care

Symptom management was identified as being challenging and in particular, the ability to manage common symptoms such as pruritus, edema and dyspnea. Initiation of new medications and renal dose-adjusting existing medications was identified as being problematic. Some PCPs indicated that they were unsure about the intensity and focus of care (e.g. target blood pressure and treatment of mineral bone disease). PCPs also indicated that their older patients with CKD had multiple comorbid medical conditions, and that navigating the complexity of managing multi-morbidity was challenging. For example, a PCP shared the challenges related to this complicated and resource-intensive patient population:

I would say the challenge is they're patients who have numerous comorbidities. There are time challenges for us with a busy office. They are patients who take a lot of time. They often are on numerous medications, they require a lot of blood work for monitoring, and they often have a high rate of hospital admissions for whether it's their renal problem or it's the diabetes, or there's congestive heart failure, or pneumonia.

Integrating multidisciplinary health professionals

PCPs generally did not utilize palliative care services that were available (e.g. physician and home care consultations). There is universal healthcare coverage with access to palliative care services by all residents in Canada, where those services are provided. However, palliative care services were generally not perceived to be relevant for this patient population (palliative care was recognized as a resource for cancer patients). For example, one PCP acknowledged this oversight: ‘We have a palliative care team in the community here, [but] we tend to involve them here in more in things like cancer and recently in heart failure. But with renal impairment, it's not something that's been in my radar as such.’

PCPs also reported a lack of awareness of renal conservative care resources. Participants indicated that awareness of comprehensive conservative care programs and understanding of other relevant resources available to them locally would enhance their provision of care. Finally, PCPs reported difficulty providing optimal care for patients managed conservatively due to variation in renal-specific expertise among health professionals involved in their care (e.g. care aids in assisted living facilities, home care nurses and palliative care nurses).

Challenges associated with managing patients jointly with specialists

Negotiating healthcare provider roles and responsibilities

Some participants expressed challenges co-managing their patients with nephrologists, including lack of role clarity and lack of communication. The extent of PCP involvement in co-management depended on individual physician preferences and therefore needed to be tailored to each patient's individual providers. For example, one PCP expressed their need to establish a co-management system in a manner that meets their expectations: ‘Sometimes I think it takes an effort from the family or the primary care physician to actually liaise with the [renal] clinic…to establish who does what and how do we do things.’

PCPs indicated that clear communication of roles and responsibilities is required to ensure optimal patient care; hence, communication with nephrology was also a barrier to conservative care. Some PCPs preferred to be informed when there are any changes in medications, tests, referrals and the patient's clinical status. For example, one PCP expressed their dissatisfaction when they were not informed by the nephrologist of their patient's death: ‘The disappointing thing was that once I made that phone call [to the nephrologist], I never got any documentation or phone calls back from that service, and I had to find out by reading in the newspaper that she had died.’

Facilitators

While there are many barriers to providing renal conservative care, PCPs also identified key facilitators that could help them in their practice. These facilitators fell into three major themes.

Establishing patient and family expectations of chronic kidney failure early

The establishment of patient and family expectations of kidney failure was facilitated via discussions regarding resuscitation status and determination of the appropriateness of a conservative care approach.

Employing discussions regarding resuscitation status

Some participants indicated that resuscitation status discussions were an integral part of the initial stages with patient and family members to establish their expectations of kidney failure; for example, a PCP expressed that ‘I think if you try to set the expectations fairly quickly, then you know that certainly helps’. Participants contended that these discussions prompted patient and family members to share their values and preferences, which in turn facilitated discussion about a clear treatment path.

Determining appropriateness of conservative care approach

The physician's clinical assessment of the patient as a whole was important for determining whether the patient was appropriate for dialysis or non-dialysis care. PCPs identified that once a patient has been deemed less appropriate for dialysis, then they are cared for with a palliative care approach (which may or may not involve palliative care services); for example, one participant remarked that ‘ …the bottom line is I do figure that if people have chosen not to go on dialysis that it is a palliative situation’. Hence, reaching the treatment decision as a care team involving the patient, family and physician was important for providing optimal care.

Preserving continuity of care

PCPs valued the preservation of continuity of care with direct access to designated primary care providers, minimization of unnecessary intervention or burdens of healthcare, and developing their patient and family's trust and confidence in conservative care.

Enabling patients’ direct access to designated primary care providers

The preservation of continuity of care was key to the PCPs' decision whether or not to refer their patients to a nephrologist. This also influenced their level of personal involvement in patient care and patterns of referral. Hence, some PCPs provided their patients with direct access to their own care (e.g. providing the patient/family member with their cell phone number). For example, one participant explained their approach to enabling patients' direct access to primary care providers: ‘I have a built-in protocol with how the team functions with the patient and the family. So I always have one family member designated as the contact individual…then I identify one team member as the primary contact person as well, so sometimes that's me.’

Minimizing unnecessary interventions

Participants expressed concern about the burden placed on patients if they were required to visit a nephrologist. For example, a PCP explained that the burdens included the patients' time, cost of transportation and enduring invasive examinations: ‘It would have just been a burden to send [the patient] to another specialist, and explain all the story and inevitably the [nephrologist] says “oh let's do a couple of extra investigations”…for some of these older people, it's a marathon process.’

Developing patient and family's trust and confidence in conservative care

The patient and family's trust and confidence in the healthcare team were key facilitators of conservative care. This was achieved in many ways (e.g. through time, patience and demonstrating that the providers actually cared for the patient and their family), for example, one participant expressed:

Sometimes … if you just gave them time, if you just show them that you really, really care, they go to all the quality of the physician and nurses, then they start to trust you, then they actually start to actually listen to what you're saying, and then we can have good discussions. So a lot of people will sort of turn around the initial ‘no, I want this, this, this, and that.’

Utilizing a multidisciplinary team approach

Leveraging renal-specific competencies of nephrologists and allied health professionals

Participants expressed the importance of having a strong multidisciplinary team, both within and outside of their medical clinics, and with both generalists and those with renal-specific expertise. For example, a PCP expressed that having a multidisciplinary team was their practice standard: ‘It usually involves a multiple health professional team as well as the patient and their family. It rarely is just a patient–physician relationship.’ Having these team members enabled PCPs to feel more confident and supported in the care of the patient and their family.

Strategies to enhance conservative care

PCPs identified the following potential strategies for enhancing conservative care, which included having: telephone access to clinicians familiar with conservative care, treatment decision aids for patients and their families, and a conservative care clinical pathway to guide management.

Telephone access and treatment decision aids

To obtain the necessary advice and guidance without formal referral, some participants highlighted the value of telephone access to conservative care clinicians (e.g. nurse clinicians or nephrologists) to improve patient care. They indicated that having a discussion with such a clinician was both efficient and important. For example, one PCP indicated that ‘it would make more sense for me as a non-palliative care doctor to be able to quickly access with a phone call somebody who has that information in their head right away’. Further, some PCPs suggested the value of educational resources for patients and their family, such as treatment decision aids for symptom management, to support the PCP in their ‘approach to…verbalize what the options are, what the pros and cons are, and what the realistic expectations are’.

A conservative care clinical pathway

When probed whether a conservative care clinical pathway would aid in community-based conservative care, some PCPs welcomed the idea: ‘just to get that learning out there and to have a readily available tool to go “okay, for this symptom I'll do this and for these symptoms I'll do that,” it would be helpful.’

DISCUSSION

In this qualitative study, we found that PCPs identified conservative care of older adults with non-dialysis Stage 5 CKD as a complex process with several potential barriers and facilitators to care. The barriers to conservative care were multidimensional and encompassed challenges to more effective management of patient/family expectations, and optimization of medical management and co-management. Overarching key facilitators to community-based conservative care included the early establishment of patient/family expectations, sustaining continuity of care and incorporating a multidisciplinary care team.

Although the perspectives of PCPs on conservative care for older adults with Stage 5 CKD have not previously been examined in North America, they were recently explored as part of a study on PCPs' view on managing advanced CKD in the UK [12]. There were some similarities to the findings of our study. Regarding patients with advanced CKD, they reported challenges related to managing multiple comorbidities, a lack of awareness of conservative care programs, and difficulty negotiating healthcare provider roles and responsibilities. However, we focused on older adult patients with chronic kidney failure not planning to initiate dialysis while residing in Canada, a country with universal healthcare coverage with access to palliative care by all residents in locations where it is provided [13]. This is a particularly vulnerable patient population that is the focus of clinical practice guidelines [3] and makes up a large and growing proportion of patients with advanced CKD [2]. We identified a number of unique themes that contribute to the literature regarding conservative care delivery by PCPs for this older adult population, including barriers related to providing certainty of prognosis, patient/family unrealistic understandings of dialysis and challenges PCPs experience in their ability to deliver the best practices in renal care.

Similar to other studies of earlier stages of CKD [14, 15], we identified challenges in co-management of conservative care of older adult patients. Previous work has similarly indicated that co-management challenges were due to communication issues and a lack of clarity in the PCPs' role once the patient is under the nephrologists' care [15]. A potential solution may be standardization of roles and responsibilities regarding specific aspects of screening and care, which can be tailored to individual PCP and nephrologist preferences via direct communication. Also, periodic clinical status reports from the nephrologist to the PCP may improve the clarity of communication.

A key strength of our study was the inclusion of PCPs from rural and urban settings, from a variety of settings including supportive living facilities, and with experiences co-managing and not co-managing their patients with nephrologists. In-depth data were collected via individual interviews rather than focus groups to accommodate scheduling and traveling restrictions of study participants; telephone interviews provide a valuable source of information when it is not possible to have direct access to participants [16]. Data saturation from a purposive sample of PCPs with a range of demographic characteristics supports the transferability of these findings to PCPs across Canada. Credibility of the study was established through the debriefing of codes and themes with the research team, where questions were posed about the research process and findings to provide additional perspectives on analysis and interpretation. Also, similar findings from previous studies help to triangulate findings from this study. The rigorous data analysis process involving a team and consensus-building approach supports the dependability and confirmability of our findings.

Some potential limitations should be considered. By using a qualitative design, we did not intend to make statistically representative associations, but aimed to use rich data to explore this phenomenon in depth. Interviews were conducted on a single occasion. However, it is unlikely that participants' perspectives of conservative care would change over time. Finally, although we asked about provision of care to a clearly defined patient group aged ≥75 years not treated with renal replacement therapy, and the majority of patients treated with conservative care are older adults [2], conservative care can also be an appropriate treatment option for younger patients with chronic kidney failure.

According to international clinical practice guidelines, key components of a comprehensive conservative care program involve: interventions to delay progression of kidney disease and minimize risk of adverse events or complications, shared decision-making, active symptom management, detailed communication including advance care planning, psychological support, social and family supports, and cultural and spiritual domains of care [17]. Future work is required to examine how these components of care are being provided in the primary care setting. Further research is also necessary to identify core outcomes important to patients, families and providers to determine targets for optimal patient care.

In conclusion, we qualitatively demonstrated that PCPs perceive barriers and facilitators to their provision of conservative care for older adults with Stage 5 CKD not on dialysis, related to the complex components of care for this patient population. Potential strategies by renal programs in partnership with PCPs to enhance the quality of conservative care in the community, including telephone access to renal conservative care clinicians, education tools to aid in patient treatment decision-making and a renal conservative care clinical pathway, may enhance the care for this patient population.

SUPPLEMENTARY DATA

Supplementary data are available online at http://ndt.oxfordjournals.org.

FUNDING

H.T. is supported by an Alberta Innovates—Health Solutions 201504 Graduate Studentship File No: 201500186. This study was also supported by the Interdisciplinary Chronic Disease Collaboration.

CONFLICT OF INTEREST STATEMENT

None declared.

ACKNOWLEDGEMENTS

We thank all of our research participants for their time and for sharing their perspectives. The authors acknowledge Ms Pam Leblanc and Ms Jo Anne Plested for their support with participant recruitment and data analysis, and Ms Daria Smeh, Ms Connie Jolicoeur and Ms Sarah Gillis for assisting with interview transcriptions.

REFERENCES