Self-care management of bothersome symptoms as recommended by clinicians for patients with a chronic condition: A Delphi study

Background: Chronically medically ill patients often need clinical assistance with symptom management, as well as self-care interventions that can help to reduce the impact of bothersome symptoms. Experienced clinicians can help to guide the development of more effective self-care interventions. Objective: To create a consensus-based list of common bothersome symptoms of chronic conditions and of self-care management behaviors recommended to patients by clinicians to reduce the impact of these symptoms. Methods: A two-round Delphi study was performed among an international panel of 47 clinicians using online surveys to identify common and bothersome symptoms and related self-care management behaviors recommended to patients with heart failure, chronic obstructive pulmonary disease, asthma, type 2 diabetes, or arthritis. Results: A total of 30 common bothersome symptoms and 158 self-care management behaviors across the ﬁ ve conditions were listed. Each chronic condition has its own bothersome symptoms and self-care management behaviors. Consensus was reached on the vast majority of recommended behaviors. Conclusions: The list of common bothersome symptoms and self-care management behaviors re ﬂ ect consensus across four countries on many points but also disagreement on others, and a few recommendations are inconsistent with current guidelines. Efforts to encourage clinicians to recommend effective self-care management behaviors may reduce symptom impact in chronically ill patient populations. © 2022 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)


Introduction
The number of individuals suffering from one or multiple chronic conditions is increasing worldwide and causing more than 70% of all deaths globally. 1,2These non-communicable or long-term chronic conditions caused by genetic, physiological, environmental, and behavioral factors are characterized by a long duration, a progressive trajectory, and long-term medical attention and management. 3,4elf-care is important in the management of long-term conditions.According to the Middle-Range Theory of Self-Care of Chronic Illness, self-care refers to a process of maintaining health through healthpromoting practices and managing illness. 5Key dimensions of selfcare include maintenance (behavior to maintain physical and emotional stability), monitoring (observing for changes in signs and symptoms), and `management (response to signs and symptoms when they occur). 5Self-care can improve patient-reported outcomes, reduce healthcare utilization, and decrease mortality.6À8 People with chronic conditions often experience bothersome symptoms, such as shortness of breath or dizziness.Symptoms are subjective detections of underlying bodily changes that may vary over time. 9Bothersomeness reflects the subjective interpretation of patients that the symptom affects their daily life.Early detection of bodily changes and a rapid response to symptoms helps to reduce the impact of bothersome symptoms on patients' life and disease worsening. 9,10How people respond to their symptoms depends on several factors, such as their knowledge, experiences, cultural norms, attention, cognitive status, support from others and access to care. 5 Clinician support can help patients manage their symptoms more effectively. 3An essential part of clinician support consist of trying to improve patients' self-care management by equipping patients with skills to actively manage their symptoms. 5Clinicians routinely recommend to patients what to do when experiencing a specific symptom.The desirable behaviors are often related to the particular condition, symptom severity, cause, and nature of the symptoms. 5ehaviors can entail independent actions such as taking an extra diuretic when experiencing shortness of breath in heart failure, while others require consultation with a clinician.
Little is known about which self-care management behaviors are recommended by clinicians and even less is known about whether clinicians in different countries provide different recommendations to their patients.This knowledge is important for guiding the development of more effective self-care interventions and improving the clinical support of self-care management behaviors of patients with a chronic condition.
The aim of this study was to create a consensus-based list on common bothersome symptoms of chronic conditions and of self-care management behaviors that clinicians recommend to patients to reduce the impact of these symptoms.It focused on clinicians' recommendations for five common chronic conditions: heart failure (HF), chronic obstructive pulmonary disease (COPD), asthma, diabetes mellitus type 2 (DM2), and arthritis.These conditions were chosen because they often present with frequent and bothersome symptoms (e.g., cough, pain).

Design
We conducted a Delphi study of clinicians across four countries (Italy, the Netherlands, Sweden, and the United States (US)) to create a consensus-based list of bothersome symptoms and related self-care management behaviors that clinicians recommend to patients.We solicited and synthesized expert opinion over two rounds of surveys of a sample of clinicians whose responses remained anonymous to each other. 11The processes of data collection and analysis are shown in Fig. 1.The study was approved by the Institutional Review Board of the University of Pennsylvania.

Participants
To ensure diversity of perspectives, we generated a multidisciplinary and international Delphi panel of clinicians. 11,12It included physicians, occupational therapists, nurse practitioners, and nurses.
Clinicians were purposely selected through the professional network of the research team, clinics that care for chronically ill adults, and snowball sampling.For each of the four countries, a minimum of five clinicians for each of the following common chronic conditions: HF, COPD, asthma, DM2, and /or arthritis, were invited.Inclusion criteria were: (i) expertise in clinical care for adults with HF, COPD, asthma, DM2, and /or arthritis, (ii) working at least part-time in the last three months in a clinical setting for adults with HF, COPD, asthma, DM2, and /or arthritis, and (iii) able to complete the survey in Italian, Dutch, Swedish, or English.An e-mail with study information and a link to the Qualtrics survey (Provo, UT) was sent via email to potential participants.Participants were informed that responses provided in the round 1 survey would be shared in round 2 as a collective list, but that their identity would remain anonymous to other participants throughout the study.For the snowball sampling, participants were asked at the end of the first survey to recommend eligible colleagues to participate.A member of the study team then invited their colleague(s) by email to participate in the study.Participants received a reminder e-mail within two weeks.The Delphi survey was conducted between December 2020 and April 2021.
We aimed to include a panel of 15 experts per chronic condition, since this sample size is considered to provide sufficient diversity. 13

Delphi rounds
The Delphi survey consisted of two rounds. 11,12In round 1, we sought to identify common bothersome symptoms and generate an exhaustive list of self-care management behaviors for these symptoms.In round 2, we aimed to reduce this list to the self-care management behaviors for which at least 75% of clinicians agreed with the recommendation.An agreed-upon definition of consensus for conducting a Delphi study is lacking.The cutoff point of 75% was chosen prior to data collection, as suggestions for consensus have ranged from 51% to 100%. 12

Round 1 survey -data collection
First, we collected data on demographic and occupational characteristics (age, gender, highest level of education, years of experience caring for adults with a chronic condition, current primary role, and employment setting).Second, we provided participants with two open-ended prompts for each chronic condition: (i) list up to five of the most common bothersome symptoms that patients with this condition experience, and (ii) list self-care management behaviors that you recommend to patients for this symptom.There was no limit to how many self-care management behaviors a participant could list.
Participants were asked to respond only for the conditions that they cared for routinely.For example, one clinician may have completed the survey for one condition, while another clinician may have completed the survey for all five conditions.Round 1 survey À data analysis SPSS version 26 (IBM Corporation, Armonk, NY, USA) was used for the analyses.We used descriptive statistics to analyze the demographic data.All survey responses from respondents in Italy, the Netherlands, and Sweden were translated into English by bilingual members of the study team (AS, EV, HW, and TJ).Responses were aggregated by two researchers (BR and SP) to generate a list of bothersome symptoms with accompanying self-care management behaviors for each condition.Similar self-care management behaviors were merged to reduce redundancy and wording was rephrased to improve clarity.We aimed to generate an exhaustive list of self-care management behaviors for the clinical experts to review in round 2. Therefore, BR and SP reviewed the North American Nursing Diagnosis Association (NANDA) International Nursing Diagnoses, the Nursing Interventions Classification (NIC), and conducted an internet search of patient education resources (e.g., Medli-nePlus) to identify additional self-care management behaviors.14À16 The aggregated list was reviewed (AS, EV, HW, and TJ) and any disagreements were resolved via discussion in the research team.The list of bothersome symptoms and self-care management behaviors were then translated into Italian, Dutch, and Swedish for round 2 of the Delphi survey (AS, EV, HW, and TJ).

Round 2 survey À data collection
In the round 2 survey, we listed the bothersome symptoms for each condition that was identified in round 1.First, we displayed the self-care management behaviors for each symptom and asked participants to rate if they recommend the behavior to patients when they experience that symptom.Second, we asked participants to identify any additional self-care management behaviors for the symptoms and provide overall comments on the list of symptoms or self-care management behaviors.As in round 1, participants were asked to respond only for the conditions that they cared for routinely.

Round 2 survey À data analysis
We calculated the percent agreement for each self-care management behavior by dividing the number of participants who indicated that they agreed by the total number of participants per chronic condition.Self-care management behaviors that received at least 75% agreement were retained.Similar self-care management behaviors were discussed and merged to reduce redundancy, and wording of self-care management behaviors was rephrased to improve clarity (AS, EV, HW, and TJ).
The comments provided by the participants were qualitatively analyzed.First, all comments were translated into English (AS, EV, HW, and TJ).Second, the comments were reviewed to determine if any additional self-care management behaviors should be added to the list (BR and SP).Third, meaningful comments on ratings were identified and summarized (BR, HW, MR, SP, and TJ).

Demographic characteristics
Demographic characteristics of the Delphi panel are shown in Table 1.In total, 112 clinicians were invited to participate and 47 clinicians completed the Delphi round 1 survey (response rate 42%).Reasons for nonresponse were maternity leave, not working clinically, limited time for participation, and unspecified.Most respondents were European (85%), female (81%) and had a background in nursing (86%).Age, educational background, experience, clinician type (e.g., nurse, physician), and setting varied greatly.Most clinicians were experienced in one condition (n = 27) and were involved in the care of patients with HF (n = 26), whereas only 6 clinicians were involved in arthritis care.
The second Delphi round was completed by 30 of 47 clinicians (response rate, 64%).Reasons for non-response were limited time for participation and unspecified.

Round 1 survey
In total, 30 bothersome symptoms were identified across the five chronic conditions (see Table 2).Most symptoms (n = 23) were condition specific, (e.g., swelling in HF and joint pain in arthritis).Fatigue/ tiredness was identified as a bothersome symptom for all the chronic conditions.There were more common bothersome symptoms identified in HF (n = 12) and DM2 (n = 11) compared with the other chronic conditions.The clinicians paired their recommended self-care management behaviors with each of the identified symptoms; see Fig. 2 and Table 3.

Round 2 survey
The results of Delphi round 2 are shown in Fig. 2 and Table 3.The final list consists of 158 out of the 202 (78%) identified selfcare management behaviors divided among 30 identified bothersome symptoms of HF, COPD, asthma, DM2, and arthritis.
Most behaviors (n = 151; 75%) of round 1 were considered relevant with consensus (75% agreement) and were included in the final list.All behaviors without consensus (<75% agreement) were removed (n = 40; 20%).Most of the divergence was found in HF (n = 15) and DM2 (n = 14).Consensus was reached on 8 of 11 recommended behaviors that were added based on review of NANDA, the NIC, and an internet search of patient education resources.Four behaviors that reached consensus were removed due to overlap with similar behaviors (e.g., stand up slowly and avoid quick movements) or because the behavior comprised a step in the decision-making process (e.g., evaluate possible causes).The comments of clinicians resulted in the addition of seven behaviors to the final list.These behaviors were mentioned by multiple clinicians (e.g., check blood pressure) and/or were consistent with recommendations for other symptoms (e.g., contact health care provider).No more bothersome symptoms were suggested in round 2.
Some clinicians commented on their ratings.The meaningful comments were summarized in two topics: (1) Tailoring recommended behavior to the cause of the symptom, patient's situation, and clinician's preference and (2) Discrepancies in recommended behaviors, see Table 4.

Discussion
To the best of our knowledge, this is the first study of clinicians' recommendations for self-care behaviors intended to reduce the impact of common bothersome symptoms of HF, COPD, asthma, DM2, and arthritis.Based on two Delphi rounds, we identified 30 common bothersome symptoms and 158 self-care management behaviors that are endorsed by clinicians for patients to implement in their daily lives.
This extensive list emphasizes the complexity of self-care and self-care management behaviors for both patients and clinicians.Each chronic condition has its own bothersome symptoms and selfcare management behaviors.Only two bothersome symptoms (fatigue and shortness of breath) are common in multiple conditions.The similarity and diversity of symptoms and behaviors is especially challenging for patients with multimorbidity.When they experience a symptom, these patients may be expected to figure out which condition it is due to and to choose the symptom management behavior (s) that fits that condition.However, it is not necessarily realistic to expect patients to be able to divine the causes of their symptoms and to tailor their self-care behaviors accordingly.Clinicians play an important role in supporting patients with multimorbidity regarding decision-making about how to manage these symptoms.They can support patients in prioritizing self-care management behaviors based on the dominant condition, and help them to resolve contradictory or ineffective symptom management recommendations from multiple clinicians.17À19 Although clinicians tend to focus too narrowly on the conditions that are within their expertise, it is important to take comorbidities into account and collaborate with other clinicians that are involved in treating comorbid conditions. 17In addition, clinicians should collaborate with patients when choosing the treatment that best fits their needs and preferences.Both the clinician's medical expertise and the patient's knowledge about their situation determine which bothersome symptom should be managed.
The consensus-based list reflects the recommendations of a small but diverse sample of practicing clinicians and therefore provides only a glimpse into current self-care support recommendations.The list reveals that different clinicians may recommend different self- care management behaviors for the same symptom.The list might not be complete, and some of the listed recommendations may not in fact be evidence-based compared with practice guidelines.Although clinicians reached consensus on the vast majority of the recommended behaviors, and although most of the behaviors align with recent guidelines, some of the recommendations are not supported by current evidence.In both Delphi rounds 1 and 2, several self-care management behaviors that are not clearly associated with evidence stand out.For example, in HF, some clinicians listed decreased urine volume/frequency as a bothersome symptom (which is a sign and not a symptom), and almost half of the clinicians agreed to advise patients to rest during the day to increase renal circulation.However, rest might not be relevant advice as renal insufficiency is a prognostic indicator of systolic dysfunction, and the assessment of renal function is essential to adjust medication doses and medical therapy.20À22 As another example, in DM2, a minority of clinicians recommended the use of sour drinks or ice cubes for hyperglycemia.These recommendations lack evidence and are inconsistent with clinical guidelines. 23,24lthough we aimed to list bothersome symptoms, clinicians also reported bothersome signs.In clinical practice, most patients with a chronic condition experience both signs and symptoms and report on them interchangeably.If patients indicate discomfort from a sign or a symptom, this requires self-care management recommendations from clinicians.
In an effort to develop an exhaustive list, we added self-care management behaviors between round 1 and 2 that were based on review of the NANDA diagnoses, NIC, and an internet search.Most (8 out of 11) of these added self-care management behaviors reached consensus and were retained in the final list.Postural drainage and chest physiotherapy are nursing interventions to promote airway clearance and were included on patient-focused websites during our internet search; however, they were not agreed upon by the Delphi panel.These discrepancies are consistent with a Global Initiative for Chronic Obstructive Lung Disease report that notes that although self-management intervention programs improve outcomes in COPD, there is a lack of consensus among what constitutes self-management in COPD. 25,26n routine clinical care, the problem of providing recommendations that lack evidence and/or do not comply with clinical guidelines is well-known. 27,28Underutilization of disease-specific guidelines can be time-related, due to different types of training and expertise, failure to integrate recent guidelines in education, professional group norms, and the challenges of caring for patients with comorbidity. 17,27Furthermore, adoption of diseasespecific guidelines is also influenced by organizational, cultural, and practical factors. 27,28For example, cultural differences can create discrepancies between clinicians across different countries.In some countries, for example, clinicians advise patients with hypertension to refrain from eating licorice, but in other countries, clinicians do not provide this advice.
Adherence to guidelines is influenced by the clinician's individual mindset, perceptions, and experience.Some may be wedded to what they do and feel comfortable with prior successes, regardless of whether their practices are consistent with current guidelines. 17In our study, some clinicians commented that they tailor their advice to their patient's preferences or clinical and life situation and/or to the cause of the symptom, which aligns with other studies. 29,30This implies that some recommendations should be tailored to the patient's individual situation.
The heterogeneity and discrepancies in recommendations that we found can also be explained by the diversity in clinicians as our Delphi panel consisted of registered nurses, nurse practitioners, physicians, and an occupational therapist from four different countries who also differed from one another with respect to education, health care systems, culture, inpatient and outpatient roles.In addition, different national and international guidelines might promote different self-care management behaviors. 31ur study focused on the recommendations of clinicians rather than the perspectives of patients.The perception of what is important may differ between clinicians and patients, and clinical    advice should be tailored to the needs and preferences of patients. 32Further research is needed to determine whether patients agree with clinicians as to which symptoms are bothersome and as to whether they view the behaviors that clinicians recommend as being both helpful and feasible.Furthermore, we know that clinicians consistently acknowledge the importance of focusing on knowledge and emphasize patient education rather than behavioral strategies to improve self-care management behaviors. 29How and to what extent clinicians discuss their recommendations with patients and whether patients comply with these recommendations when experiencing bothersome symptoms needs further research.

Strengths and limitations
A strength of this study was the variety of clinicians in our expert panel.Nurses, nurse practitioners, an occupational therapist, and physicians of four different countries agreed on bothersome symptoms and self-care behaviors, which promotes the generalizability of these results in routine care across borders.
This study also has some limitations.First, despite extensive recruitment from the network of the researchers and snowball sampling with multiple reminders, the response rate was not high in either round.Our study was conducted during the Covid-19 pandemic, which might explain why some clinicians were unable to  "I would rather teach patients that hypoglycemia is a serious complication of treating diabetes, which should be avoided".[DM2] "the advices are formulated as black and white, but take extra diuretics only after this has been agreed, not to be applied by everyone". [HF] Discrepancies in recommended behaviors Some clinicians commented on the content of their advised behaviors.Comments generally aligned between the clinicians.However, some discrepancies were found in the comments regarding behaviors to checking blood sugar after hypoglycemia, e.g., taking sugar and/or drinking milk and eat a sandwich.Some advice might be cultural specific, e.g., eating liquorice is common in the Netherlands and is known for increasing the blood pressure.
"Take a sachet of sugar (15 g) and re-check the blood glucose after 15 min.Repeat the procedure until blood glucose gets normal."[DM2] "Drink milk and eat a sandwich."[DM2] "Do not eat liquorice."[HF]  participate.Due to the low response rate, we did not meet our cut-off point of including 15 clinicians per chronic condition for arthritis (n = 6) and asthma (n = 12).This could mean that, for these conditions, some bothersome symptoms and self-care behaviors may have been overlooked.Second, as the vast majority of the clinicians had a nursing background, the results of our study mainly reflect nurses' recommendations and consensus of bothersome symptoms and self-care management behaviors.However, in clinical practice, most of the recommendations regarding self-care management are done by nurses.Third, given the wide variety in the methodological designs of Delphi studies, little foundation for our methodological decisions can be provided.However, we followed a commonly used research guideline for Delphi studies. 11Prior to starting the study, we decided that two Delphi rounds should be sufficient, 11,12 but additional rounds might have led to the identification of additional bothersome symptoms and self-care management behaviors.Also, the Delphi rounds consisted of surveys rather than face-toface meetings, which did not allow us to discuss ratings, discrepancies, and rationales for clinicians' opinions.However, clinicians were invited to comment on their ratings, and we were able to include almost 50 clinicians in our expert panel.

Conclusions
A total of 30 bothersome symptoms and 158 self-care management behaviors of HF, COPD, asthma, DM2, and arthritis that can reduce symptom impact were identified by an international panel of clinicians.There was consensus among the clinicians on many points but also some disagreements and a few of the recommendations are inconsistent with current guidelines.
Further research and effective implementation strategies are needed to encourage more clinicians to recommend effective selfcare management behaviors to reduce the impact of common bothersome symptoms of major chronic conditions.

Study funding
Australian Catholic University, Australia.The funder had no role in the study design, data collection, analysis, or interpretation, the writing of the report, or the decision to submit the article for publication.

Disclosure
None

Table 1
Demographic characteristics of the Delphi panel (n = 47).
Abbreviations: DNP: Doctor of Nursing Practice; MD: medical doctor.*Clinicians could be experienced in multiple conditions.

Table 2
Bothersome symptoms of chronic conditions across the five conditions.

Table 3
Results of Delphi round 1 and 2.

Table 3 (
Continued) *items with <75% agreement were removed; **analyzed by the research team.Abbreviations: Com, comments of clinicians; PA, percent agreement.

Table 4
Meaningful comments of clinicians of Delphi round 1 and 2. They first try to find out what causes the symptom and tailor their advice to the patients' situation.Decision-making also depends on the expertise and preference of clinicians."It is usually not one or the other.It can be multiple things at once [. ..].It depends on the person and situation".[Arthritis]