Abstract
Background
Several pharmacological and non-pharmacological interventions are used to manage physical symptoms in advanced kidney disease (AKD). Adults with AKD and kidney healthcare professionals require guidance in identifying and prioritizing relevant symptom-management interventions. The aim of this study was to develop a consensus-based symptom-management guidance for adults with AKD and kidney healthcare professionals.
Methods
A four-round Delphi study was conducted across Denmark to achieve consensus on symptom-management among a national expert panel of adults with AKD and kidney healthcare professionals. A classical anonymous Delphi design was selected to reduce group conformity and allow independent reassessment of responses across iterative rounds. A pragmatic literature search, alongside suggestions from the expert panel, was used to identify potential interventions. Participants rated the relevance, importance, and frequency of intervention through a series of online surveys. Consensus was defined as > 70% agreement.
Results
The expert panel consisted of 54 participants, the majority of whom had more than 10 years of nephrology experience. Four Delphi rounds were completed, with response rates of 83%, 67%, 63%, and 59% respectively. The literature search identified 216 interventions with varying levels of evidence, and an additional 80 interventions were suggested by the expert panel. Overall, 242 interventions achieved consensus agreement above 70%. In the final Delphi round, interventions were prioritized according to their perceived importance and frequency in nephrology practice.
Conclusions
This study developed a national consensus-based symptom-management guidance for adults with AKD. By integrating available evidence, clinical expertise, and patient perspectives, the study provides a foundation for future development and evaluation of symptom-management support resources in nephrology care.
Supplementary Information
The online version contains supplementary material available at https://doi.org/10.1186/s12882-026-05143-1.
Keywords: Symptom-management, Delphi study, Kidney failure, IPOS-Renal
Background
Chronic kidney disease occurs in five grades, each reflecting the level of kidney function. It is in the later grades, 4 and 5, where kidney function is severely reduced and which are collectively known as advanced kidney disease (AKD). When this level of kidney function is reached, regardless of whether kidney replacement therapy is commenced or not, symptom burden is often substantial. These symptoms significantly impact both physical and mental aspects of quality of life [1]. Systematic assessment and documentation of symptoms are essential to guide individualized, person-centred care and optimize symptom relief [2, 3].
The Integrated Palliative care Outcome Scale – Renal (IPOS-Renal) is a validated and widely used patient-reported outcome measure designed specifically for individuals with AKD. It facilitates comprehensive symptom assessment across physical, psychological, social, spiritual, and practical domains [4–6]. The IPOS-Renal has been translated and culturally adapted for use in Denmark, where its relevance and acceptability among Danish patients have been demonstrated [7].
As the IPOS-Renal is to be implemented in clinical settings across Denmark, there is a need for a national symptom-management guidance to assist adults with AKD and kidney healthcare professionals in managing the physical symptoms. Such guidance should be grounded in the principles of evidence-based healthcare, incorporating the best available research evidence, clinical expertise, and patient values and preferences [8]. Collaborative input from kidney healthcare professionals, researchers, and adults with AKD is therefore essential to ensure that treatment decisions are responsive to individual needs and circumstances. While international symptom-management guidance already exists for some psychosocial symptoms measured in the IPOS-Renal [9], guidance addressing physical symptoms in nephrology practice remains limited.
Most adults with AKD report between six and twenty symptoms [10]. IPOS-Renal captures a broad spectrum of physical symptoms, including pain, breathlessness, fatigue, nausea, poor appetite, constipation, dry mouth, pruritus, sleep disturbances, restless legs, skin changes, and diarrhoea [7]. However, IPOS-Renal does not encompass all symptoms experienced by adults with AKD, including swelling, sexual symptoms, memory loss, dizziness, and feeling cold [7]. Adults with AKD commonly experience multiple coexisting physical symptoms that negatively affect quality of life and daily functioning [11–13]. The complexity and co-occurrence of symptoms highlight the need for structured symptom-management support tailored to nephrology care [3].
Methods
Aim
The aim of this study was to develop consensus-based symptom-management guidance for adults with AKD and kidney healthcare professionals.
Design
This study employed a four-round online Delphi method to achieve expert consensus regarding the relevance, importance and frequency of symptom-management interventions for the physical symptoms assessed by the IPOS-Renal questionnaire [14]. The study has been conducted and reported according to the Conducting and Reporting Delphi Studies (CREDES) Guidelines [15]. A Delphi approach was selected because evidence regarding effectiveness of many symptom-management interventions in AKD remains limited. The Delphi technique enables systematic integration of available evidence, clinical expertise, and patient perspectives in areas characterized by uncertainty and variation in practice. A classical anonymous Delphi design was chosen to reduce the influence of dominant individuals, minimize group conformity, and allow participants to independently reconsider their responses across iterative rounds [15].
Setting
The Danish healthcare system is predominantly publicly funded through taxation, ensuring universal and equitable access to healthcare for all residents [16]. Within nephrology care, a collaborative, multidisciplinary approach is employed, wherein nephrologists, kidney nurses, and patients work in partnership to identify, monitor, and manage physical symptoms associated with AKD. There are 14 kidney centres spread across the country.
Participants
The expert panel was recruited by members from a national multidisciplinary nephrology group on conservative kidney management. This group includes nephrology nurses and nephrologists representing all Danish kidney centres, with clinical experience in both haemodialysis and peritoneal dialysis, and a special interest in kidney palliative care. No universally accepted standard exists regarding optimal Delphi panel size [15]. The selected panel size was considered appropriate for achieving national representation across Danish nephrology care while maintaining feasibility within the study timeframe. This group also reached out to colleagues in their department to identify other clinicians who have a focus on symptom-management. Adults with AKD were recruited through the Danish Kidney Association to ensure that lived-experience perspectives were integrated into the development of the consensus-based symptom-management guidance. The study aimed to include adults with AKD, nephrology nurses, and nephrologists with experience in symptom-management across multiple treatment modalities and healthcare regions in Denmark. The focus on a Danish expert panel was chosen because healthcare organization, prescribing practices, and availability of interventions vary internationally. Dietitians are involved in outpatient kidney care in Denmark; however, other healthcare professionals such as physiotherapists and occupational therapists are primarily involved in inpatient rather than outpatient nephrology care. Therefore, the composition of the panel partly reflects the organization of outpatient nephrology care in Denmark. Participants remained anonymous throughout the Delphi process.
Literature search
The literature search was conducted pragmatically to identify potential symptom-management interventions for inclusion in the Delphi rounds rather than as a formal systematic review of intervention efficacy. To identify symptom-management interventions for each physical symptom listed in the IPOS-Renal, a literature search was conducted in CINAHL, MEDLINE, and PubMed databases to identify reviews and evidence-based guidelines published between August, 2014 and August, 2024 in English or Danish. In addition, a grey literature search was conducted by contacting international kidney healthcare services in the United Kingdom, the Netherlands, Australia and Canada with expertise in AKD symptom-management to identify any further evidence-based clinical guidelines. The search focused primarily on literature and guidance relevant to AKD symptom-management, including reviews, clinical guidance documents, and grey literature resources from nephrology and palliative care settings. Using the IPOS-Renal, each symptom was addressed individually to identify relevant pharmacological and non-pharmacological interventions. Pharmacological interventions not available in Denmark were excluded prior to the Delphi rounds. As the symptoms of nausea and vomiting identified the same interventions, these two symptoms were grouped together. Similarly, the symptoms of weakness, lack of energy, and drowsiness were grouped together. These symptoms were grouped pragmatically because substantial overlap was identified in symptom-management interventions across these symptom categories.
Delphi-study
The survey was administered using SurveyXact [17], a secure Danish online survey platform. All responses remained anonymous throughout the Delphi process. First, eligible participants were approached and invited to participate in the Delphi panel. Data was collected from October 2024 to March 2025. Participants were given three weeks to complete each round, with reminders sent twice by email to non-responders. In Round 1, expert panellists rated whether each intervention was considered relevant and feasible for routine symptom-management within Danish nephrology practice using the response options ‘strongly agree, agree, disagree, strongly disagree’. Participants were asked to judge relevance as the perceived appropriateness of an intervention for symptom-management in adults with AKD and feasibility as the extent to which the intervention could reasonably be implemented within routine Danish nephrology practice. Participants were encouraged to consider both clinical applicability and practical implementation when providing ratings. Relevance and feasibility were considered together as part of an overall judgement regarding the suitability of each intervention for routine clinical practice. Because the aim was to identify interventions suitable for routine clinical use, relevance and feasibility were intentionally considered together rather than rated as separate dimensions. Participants were also invited to suggest additional interventions. In subsequent rounds, participants received summary group responses from the previous round together with the interventions progressing to re-rating. In Round 2, these additional interventions were rated for relevance. In this round, interventions from Round 1, which had obtained a consensus agreement > 30% and < 70%, were also re-rated. In Round 3, the additional interventions suggested in Round 1 and which had obtained a consensus agreement > 30% and < 70% were again re-rated for relevance. In Round 4, all interventions with a consensus agreement > 70% were rated on the importance and frequency of each intervention using the responses ‘very important (4), important (3), slightly important (2), not important (1), don’t know’ and ‘very often (4), often (3), rarely (2), very rarely (1), and don’t know’.
Data analysis
Statistical analyses were conducted using SurveyXact [17] and using Excel [18]. Descriptive statistics were calculated, and results reported as response rates, percentages for agreement, importance scores, frequency scores, and total prioritization scores. Responses for relevance were dichotomized using the first two responses as positive and the next two as negative. A total score for importance and frequency was calculated. Responses marked ‘don’t know’ were excluded from calculation of importance and frequency score. A consensus threshold was defined as ≥ 70% agreement [14].
Results
Delphi panel
In total 54 participants agreed to participate in the Delphi panel. Most of the panel had more than 10 years of experience in AKD. The panel represented various treatment modalities, haemodialysis, peritoneal dialysis, transplantation, pre-dialysis, and conservative kidney management. The characteristics of the expert panel are found in Table 1. The predominance of nurses and female participants partly reflects the demographic composition of the nephrology workforce and the organization of outpatient nephrology care in Denmark.
Table 1.
Delphi panel characteristics
| Characteristics | n (%) |
|---|---|
| Age, years | |
| < 39 | 7 (14) |
| 40-49 | 11 (21) |
| 50-59 | 20 (39) |
| 60-69 | 12 (24) |
| >70 | 1 (2) |
| Missing | 3 (5) |
| Sex | |
| Male | 6 (11) |
| Female | 48 (89) |
| Group of participants | |
| Adults with AKD | 5 (9) |
| Kidney nurse | 44 (82) |
| Nephrologist | 5 (9) |
| Primarily treatment modality | |
| Haemodialysis | 36 (67) |
| Peritoneal dialysis | 9 (17) |
| Transplantation | 2 (4) |
| Pre-dialysis | 4 (7) |
| Conservative kidney management | 3 (5) |
| Years of experience in nephrology | |
| Less than three years | 5 (9) |
| Three years to ten years | 9 (17) |
| More than ten years | 40 (74) |
| Healthcare regions | |
| Capital Region of Denmark | 6 (11) |
| Central Denmark Region | 32 (59) |
| North Denmark Region | 1 (2) |
| Zealand Region | 5 (9) |
| Southern Denmark Region | 10 (19) |
Delphi rounds
A total of four online Delphi rounds were conducted, achieving response rates of 83%, 67%, 63%, and 59% respectively, which is consistent with other Delphi studies. Due to the anonymous design of the Delphi process, it was not possible to examine attrition patterns across participant subgroups. The distinction between interventions identified through the literature search and those suggested by the expert panel is presented in Supplementary Tables S1–S13. The literature search identified 216 interventions, which were rated in Round 1. In this round, the expert panel suggested a further 80 interventions. As 46 interventions scored between 30 and 70% agreement, these would need re-rating. Round 2, a total of 126 interventions were rated for level of agreement. In this round, we elaborated in the introduction, that a symptom can have different causes and when evaluating an intervention, the participants should consider whether the intervention matches the cause. Of the suggested interventions in Round 1, 12 interventions need a re-rating in Round 3. Round 1 reached consensus for 167 interventions, Round 2 reached consensus for 81 interventions and, Round 3 for 2 interventions. A flow chart of the Delphi process is shown in Fig. 1.
Fig. 1.
Flow chart of the Delphi process
To sum up, 216 interventions were identified from research evidence, 80 interventions were suggested by adults with AKD or kidney professionals, and in total the expert panel agreed that 242 interventions were suitable for use in Denmark. As evidence-based practice involves integrating the best available evidence along with clinical expertise and patient preference (Sackett et al., 1996), Fig. 2 illustrates the connection found in this study. However, 43 of the 216 interventions identified from the literature search were not found suitable for the Danish context by the expert panel. Furthermore, 11 of the 80 interventions suggested by the expert panel did not achieve a consensus for relevance above 70%. Supplementary Tables S1–S12 present each symptom, its corresponding interventions, and the level of agreement among the expert panel. For three symptoms, the number of interventions were higher for those suggested by the panel than for those identified in the literature review. Specifically, for diarrhoea, four of seven interventions were proposed by the panel; for changes in skin, three of five; and for poor appetite, 13 of 16.
Fig. 2.
Connections between research evidence, clinical expertise, patient preferences?
When examining individual symptoms (see Table 2), the literature search showed wide variation, with the highest number of interventions identified for pain (n = 38) and the lowest for changes in skin (n = 2). The number of interventions suggested by the panel for each symptom also showed wide variation, with the highest number for restless legs (n = 15) and the lowest for changes in skin, pain, and shortness of breath (n = 3).
Table 2.
Overview of interventions categorized by symptoms
| Symptoms | Interventions driven from review n(%) |
Interventions suggested by the panel n(%) |
Interventions obtained ≥ 70% agreement n(%) |
|---|---|---|---|
| Itching | 32 (15) | 9 (11) | 29 (12) |
| Diarrhoea | 4 (2) | 5 (6) | 7 (3) |
| Changes in skin | 2 (1) | 3 (4) | 5 (2) |
| Constipation | 17 (8) | 4 (5) | 20 (8) |
| Nausea or vomiting | 22 (10) | 6 (8) | 27 (11) |
| Poor appetite | 14 (6) | 7 (9) | 10 (4) |
| Restless legs | 15 (7) | 15 (19) | 24 (10) |
| Poor mobility | 7 (3) | 5 (6) | 10 (4) |
| Weakness, lack of energy, and drowsiness | 14 (6) | 8 (10) | 22 (9) |
| Pain | 38 (18) | 3 (4) | 31 (13) |
| Difficulty sleeping | 21 (10) | 6 (8) | 24 (10) |
| Sore and dry mouth | 20 (9) | 5 (6) | 20 (8) |
| Shortness of breath | 10 (5) | 3 (4) | 13 (6) |
| Total | 216 | 80 | 242 |
In Round 4, all the included interventions were rated for importance and frequency, and a total score was calculated to indicate how the expert panel prioritize these interventions (see supplementary tables S1-S12). For most symptoms, the interventions which obtained the highest prioritization score in Round 4 had an agreement score of 98–100% in the previous rounds, with one exception. For instance, moisturizing cream for changes in skin scored 88% for agreement. Interventions considered to be complementary therapy (acupuncture and acupressure) obtained the lowest prioritization scores.
Discussion
This study addresses a recognized gap in structured symptom-management support in AKD by developing a list of agreed and prioritized interventions, which may inform future consensus-based symptom-management guidance for adults with AKD and kidney healthcare professionals. Using a four-round Delphi process, we engaged adults with AKD and kidney healthcare professionals from across Denmark, who had varying personal and professional experiences of different treatment modalities, to identify and prioritize pharmacological and non-pharmacological interventions for physical symptom-management.
The number of evidence-supported interventions varied substantially between symptoms. Pain, itch, and sleep disturbance had the greatest number of interventions, reflecting their complex aetiology and multiple management options. In contrast, symptoms such as skin changes and poor mobility yielded fewer evidence-based strategies, highlighting areas where additional research is needed. Several internationally recognized interventions for diarrhoea, changes in skin and poor appetite symptoms were judged by the expert panel as being less relevant for symptom-management in Denmark, which may reflect contextual differences in practice patterns, intervention availability, and preferences.
Some interventions endorsed by the expert panel, such as sleeping alone to reduce sleep disturbance, lack robust evidence [19] or are difficult to study but were considered reasonable and feasible. The findings suggest the importance of matching interventions to underlying symptom mechanisms when selecting management strategies [20]. Complementary treatments were generally deemed relevant but received lower priority scores, which is consistent with a systematic review summarizing the prevalence and patterns complementary and alternative interventions among adults with chronic kidney disease [21]. Interventions suggested by panellists may reflect contextual clinical experience and practice-based knowledge rather than formally evaluated evidence-based interventions. Therefore, consensus should not be interpreted as evidence of intervention effectiveness. Rather, the purpose of this study was not to determine intervention effectiveness, but to identify interventions perceived as relevant and applicable within Danish nephrology practice by adults with AKD and healthcare professionals.
The results of the Delphi process have informed development of a webpage designed to support symptom-management discussion between patients and kidney healthcare professionals. When IPOS-Renal symptom scores indicate the presence and severity of a symptom [7], the tool specifies relevant interventions, the underlying causes or mechanisms [20] for which they are appropriate, and, where available, the level of supporting evidence. This represents an initial effort to translate the consensus findings into a practical resource tailored to the Danish nephrology context.
While comprehensive, the consensus-based symptom-management guidance does not address the management of symptom clusters [11–12] or provide guidance on prioritizing between symptoms when interventions may conflict. For example, diarrhoea, constipation, and nausea may share certain non-pharmacological options, but decisions should consider symptom severity, underlying causes, mechanism, and potential treatment interactions. Identifying cross-symptom interventions and strategies for managing competing priorities represents an important avenue for future research [22]. The guidance focuses on physical symptoms, although many symptoms may also occur in clusters involving psychological or social symptoms. Difficulty sleeping, for example, is often closely linked to depressive symptoms and psychological distress.
The grey literature search identified two web based symptom-management tools for adults with AKD one from Canada and one from Australia [23–24]. The Canadian tool is both for patients and healthcare professionals whereas the Australian tool is only for healthcare professionals. We will aim for a tool targeting both groups as it is important for adults with AKD to be active in their symptom-management. It may also assist with communication between adults and kidney healthcare professionals about symptom recognition and management. Both the Canadian and Australian tools primarily provide informational support and include limited features related to shared decision-making [25] and self-management support [26]. This is noteworthy because most of the interventions identified in our Delphi study are activities that adults with AKD could perform at home, potentially with help from an informal caregiver. The Danish consensus-based symptom-management guidance will need further development and include features of shared decision making, self-management support and informal caregiver support. Although consensus methods may help address areas where evidence is limited, robust interventional and comparative effectiveness studies remain urgently needed to strengthen the evidence base for symptom-management in AKD.
Strengths of this study include methodological rigor, adherence to CREDES guidelines [15], and diverse stakeholder engagement [27]. Several limitations should be considered. Attrition occurred across Delphi rounds and may have influenced consensus development. Because participant responses remained anonymous throughout the Delphi process, attrition could not be tracked at the individual or professional-group level. Consequently, it is unknown whether the composition of the final consensus panel differed from the initial panel. This limitation should be considered when interpreting the stability and representativeness of the final consensus ratings. The panel included adults with AKD and healthcare professionals from different treatment settings; however, haemodialysis providers constituted the largest subgroup and patient representatives formed a relatively small proportion of the panel. Furthermore, nephrology nurses constituted the majority of participants, while nephrologists, other prescribing clinicians, and palliative care specialists were less represented. These characteristics reflect the organisation of Danish nephrology care but may nevertheless have influenced prioritisation of interventions. Different professional groups may place varying emphasis on pharmacological, non-pharmacological, psychosocial, and supportive interventions. Therefore, the consensus achieved should be interpreted as reflecting the perspectives of this particular multidisciplinary panel rather than all healthcare professionals involved in kidney care. Interpretation of relevance and feasibility may also have varied according to participants’ professional background, scope of practice, and clinical experience. Consequently, consensus ratings should be understood as reflecting overall perceptions of clinical applicability rather than independent assessments of intervention effectiveness, evidence quality, or implementation feasibility. The literature search was pragmatic rather than a formal systematic review and was intended to identify potential interventions for Delphi consideration rather than comprehensively evaluate intervention efficacy. Furthermore, pharmacological options unavailable in Denmark were excluded, which may limit applicability in other healthcare contexts. Finally, the focus on the Danish nephrology context may limit international transferability, particularly in healthcare systems with different organisational structures, prescribing practices, and cultural approaches to symptom management.
Conclusions
In conclusion, this study developed a national consensus-based symptom-management guidance for adults with AKD. By integrating available evidence, clinical expertise, and patient perspectives, the study provides a foundation for future development and evaluation of supportive symptom-management resources within nephrology care. The findings should be interpreted as reflecting consensus regarding perceived clinical applicability within the Danish nephrology context rather than evidence of intervention effectiveness.
Supplementary Information
Below is the link to the electronic supplementary material.
Supplementary Material 1: Interventions for itching.
Supplementary Material 2: Interventions for Diarrhoea.
Supplementary Material 3: Interventions for Changes in skin.
Supplementary Material 4: Interventions for Constipation.
Supplementary Material 5: Interventions for Nausea or vomiting.
Supplementary Material 6: Interventions for Poor appetite.
Supplementary Material 7: Interventions for Restless legs.
Supplementary Material 8: Interventions for Poor mobility.
Supplementary Material 9: Interventions for Weakness, lack of energy, and drowsiness.
Supplementary Material 10: Interventions for Pain.
Supplementary Material 11: Interventions for Difficulty sleeping.
Supplementary Material 12: Interventions for Sore and dry mouth.
Supplementary Material 13: Interventions for Shortness of breath.
Acknowledgements
Thank you to all the participants in the Delphi panel.
Abbreviations
- AKD
Advanced kidney disease
- CKD
Chronic kidney disease
- CREDES
Conducting and Reporting Delphi Studies
- IPOS-Renal
Integrated Palliative care Outcome Scale – Renal
Author contributions
JF conceived and designed the study. JF and HA acquired the data. JF performed the formal data analysis. JF drafted the manuscript. AB critically revised the manuscript for important intellectual content. All authors read and approved the final manuscript.
Funding
This research program received funding from the Novo Nordic Research Foundation, NNF23OC0082713.
Data availability
All data generated or analyzed during this study are included in this published article and its supplementary information files.
Declarations
Ethics approval and consent to participate
The study was conducted in accordance with the ethical principles of the Declaration of Helsinki. Approval was obtained from the Danish Data Protection Agency (Journal No.: 1-16-02-23-24). This type of research is excepted from ethical approval due to Danish legislation. All participants provided informed consent before participation and were informed of their right to withdraw from the study at any time without consequence.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supplementary Material 1: Interventions for itching.
Supplementary Material 2: Interventions for Diarrhoea.
Supplementary Material 3: Interventions for Changes in skin.
Supplementary Material 4: Interventions for Constipation.
Supplementary Material 5: Interventions for Nausea or vomiting.
Supplementary Material 6: Interventions for Poor appetite.
Supplementary Material 7: Interventions for Restless legs.
Supplementary Material 8: Interventions for Poor mobility.
Supplementary Material 9: Interventions for Weakness, lack of energy, and drowsiness.
Supplementary Material 10: Interventions for Pain.
Supplementary Material 11: Interventions for Difficulty sleeping.
Supplementary Material 12: Interventions for Sore and dry mouth.
Supplementary Material 13: Interventions for Shortness of breath.
Data Availability Statement
All data generated or analyzed during this study are included in this published article and its supplementary information files.