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

Open AccessPublished:June 13, 2022DOI:https://doi.org/10.1016/j.hrtlng.2022.06.001

      Highlights

      • Self-care management behaviors intend to reduce the impact of bothersome symptoms of HF, COPD, asthma, DM2, and arthritis.
      • 30 bothersome symptoms and 158 self-care management behaviors that are endorsed by clinicians across the five conditions were identified.
      • The symptoms and self-care management behaviors reflect consensus across four countries but also disagreement.
      • Clinicians need to recommend effective self-care management behaviors in clinical practice to implement in patients’ daily lives.

      Abstract

      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 five 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 reflect 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.

      Keywords

      Abbreviation:

      COPD (chronic obstructive pulmonary disease), DM2 (diabetes mellitus type 2), HF (heart failure), NANDA (North American Nursing Diagnosis Association), NIC (Nursing Interventions Classification)

      Introduction

      The number of individuals suffering from one or multiple chronic conditions is increasing worldwide and causing more than 70% of all deaths globally.
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      Organisation WH. Available from: https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases. Accessed December 28, 2021.

      These 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.
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      Key dimensions of self-care 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).
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      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.
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      A middle-range theory of self-care of chronic illness.
      Clinician support can help patients manage their symptoms more effectively.
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      • et al.
      Living with chronic illness in adults: a concept analysis.
      An essential part of clinician support consist of trying to improve patients’ self-care management by equipping patients with skills to actively manage their symptoms.
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      • Jaarsma T.
      • Strömberg A.
      A middle-range theory of self-care of chronic illness.
      Clinicians 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.
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      • Jaarsma T.
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      A middle-range theory of self-care of chronic illness.
      Behaviors 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).

      Methods

      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.
      • Hasson F.
      • Keeney S.
      • McKenna H.
      Research guidelines for the Delphi survey technique.
      The 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.
      • Hasson F.
      • Keeney S.
      • McKenna H.
      Research guidelines for the Delphi survey technique.
      ,
      • Keeney S.
      • Hasson F.
      • McKenna H.
      Consulting the oracle: ten lessons from using the Delphi technique in nursing research.
      It 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.
      • Birko S.
      • Dove E.S.
      • Özdemir V.
      Evaluation of nine consensus indices in Delphi foresight research and their dependency on Delphi survey characteristics: a simulation study and debate on Delphi design and interpretation.

      Delphi rounds

      The Delphi survey consisted of two rounds.
      • Hasson F.
      • Keeney S.
      • McKenna H.
      Research guidelines for the Delphi survey technique.
      ,
      • Keeney S.
      • Hasson F.
      • McKenna H.
      Consulting the oracle: ten lessons from using the Delphi technique in nursing research.
      In 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%.
      • Keeney S.
      • Hasson F.
      • McKenna H.
      Consulting the oracle: ten lessons from using the Delphi technique in nursing research.

      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 – 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., MedlinePlus) to identify additional self-care management behaviors.
      • Butcher H.K.
      • Bulechek G.M.
      • Dochterman J.M.
      • Wagner C.M.
      Nursing Interventions Classification (NIC).
      NANDA International
      NANDA International Nursing Diagnoses: Definitions & Classification, 2018-2020.
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      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 – 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 – 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).

      Results

      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.
      Table 1Demographic characteristics of the Delphi panel (n = 47).
      Characteristicsn (%)
      Gender
      Male9 (19)
      Female38 (81)
      Age (years)
      20–305 (11)
      31–4016 (34)
      41–508 (17)
      51–6013 (28)
      61–705 (11)
      Highest level of education
      Associate degree2 (4)
      Bachelor degree15 (32)
      Master degree11 (23)
      DNP9 (19)
      MD5 (11)
      PhD5 (11)
      Experience in caring for adults with chronic conditions (years)
      0–58 (17)
      6–1523 (49)
      16–258 (17)
      26–355 (11)
      >351 (2)
      Missing2 (4)
      Primary current role
      Registered Nurse20 (43)
      Nurse practitioner or nurse practitioner in training20 (43)
      Physician6 (13)
      Occupational therapist1 (2)
      Employment setting
      Both inpatient and outpatient16 (34)
      Outpatient only19 (40)
      Inpatient only11 (23)
      Unknown1 (2)
      Area of expertise*
      Heart failure26 (55)
      COPD17 (36)
      Asthma12 (26)
      Diabetes mellitus type 223 (49)
      Arthritis6 (13)
      Country
      Italy13 (28)
      The Netherlands15 (32)
      Sweden12 (26)
      US7 (15)
      Abbreviations: DNP: Doctor of Nursing Practice; MD: medical doctor.
      *Clinicians could be experienced in multiple conditions.
      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.
      Table 2Bothersome symptoms of chronic conditions across the five conditions.
      SymptomChronic condition
      HFCOPDAsthmaDM2Arthritis
      Chest painX
      CoughingXX
      Cramps in lower limbsX
      Decrease in urineX
      Diarrhea/constipationX
      DizzinessXX
      Fat accumulation at insulin injection siteX
      Fatigue/tirednessXXXXX
      FeverX
      Foot woundsX
      Gum problemsX
      High blood pressureX
      Hyperglycemia symptom cluster *X
      Hypoglycemia symptom cluster **X
      Hypoxemia (O2 < 88%)X
      Joint painX
      Joint stiffnessX
      Joint swelling, redness, and/or warmthX
      Loss of appetiteXX
      Physical limitation/activity limitationX
      Poor sleep qualityX
      Sensitivity to touch and vibrationX
      Shortness of breathXXX
      Shortness of breath, acuteXX
      Shortness of breath while lying downX
      SwellingX
      Swollen bellyX
      ThirstX
      Weight gainX
      WheezingXX
      * Frequent urination, increased thirst, blurred vision/acute change in sight, fatigue/listless/general malaise, headache, dry mouth.
      ** Shakiness, dizziness, sweating, hunger, blurry or double vision, paleness, headache, general malaise, acute tiredness, tingling in the mouth.
      Abbreviations: HF, heart failure; COPD, chronic obstructive pulmonary disease; DM2, diabetes mellitus type2.
      Fig 2
      Fig. 2Results of Delphi round 1 and round 2.
      Table 3Results of Delphi round 1 and 2.
      Chronic condition and symptomsSelf-care management behaviors
      Round 1 Generation of behaviorsRound 2 PA*Final behaviors**
      Heart failure
      Chest painCall an ambulance100%Call an ambulance
      Take nitroglycerin94%Take medication
      Contact healthcare provider94%Contact healthcare provider
      Evaluate possible causes83%Removed: step in decision making process
      Stop and wait for the pain to pass72%Not retained
      Take an aspirin41%Not retained
      DizzinessStand up slowly100%Stand up slowly
      Avoid quick movement94%Removed: merged with ‘Stand up slowly’
      Divide medication doses during the day86%Divide medication doses during the day
      Sit and rest82%Rest
      Toe lift before standing71%Not retained
      Check blood pressureComCheck blood pressure
      Fatigue/ tirednessBalance rest & activity100%Balance rest & activity
      Divide activities during the day/ take short breaks100%Removed: merged with ‘Balance rest & activity’
      Plan out activities94%Plan out activities and prioritize activities that mean the most
      Take advantage of "good" days and prioritize activity that means the most89%Removed: merged with ‘Plan out activities and prioritize activities that mean the most’
      Contact health care provider88%Contact health care provider
      Check blood pressure82%Check blood pressure
      Check pulse82%Check pulse
      Engage in as much physical activity as tolerated72%Not retained
      Space out medication, adjust dose during the day67%Not retained
      Increase nutrition, take supplements65%Not retained
      Distract self through doing activities59%Not retained
      Loss of appetiteEat small meals100%Eat small meals
      Prepare foods that smell and look good100%Prepare foods that smell and look good
      Seek advice of a dietician100%Seek advice of a dietician
      Eat with other people to make it social88%Eat with other people to make it social
      Avoid greasy or fried foods82%Avoid greasy or fried foods
      Eat your favorite foods78%Eat your favorite foods
      Poor sleep qualityStay physically active100%Stay physically active during the day
      Sleep in a dark, quiet room with a comfortable temperature100%Sleep in a dark, quiet room with a comfortable temperature
      Avoid caffeine in the evening94%Avoid caffeine in the evening
      Limit naps in length89%Limit naps in length
      Nap before 3pm53%Not retained
      Shortness of breathCheck body weight & swelling100%Check body weight & swelling
      Call health care provider100%Contact health care provider
      Take medication (e.g., diuretic, nitroglycerin)94%Take medication
      If worsening, call emergency services/91194%Contact emergency services
      Increase number of pillows you sleep with94%Increase number of pillows you sleep with
      Use a semi-fowler's position88%Use a semi-fowler's position
      Check oxygen saturation & use oxygen if needed80%Check oxygen saturation & use oxygen (if applicable)
      Stop activity78%Stop activity
      Restrict salt67%Not retained
      Reduce fluid61%Not retained
      SwellingTake medication (e.g., diuretic)100%Take medication
      Check body weight100%Check body weight
      Elevate legs100%Elevate legs
      Contact health care provider100%Contact health care provider
      Measure swelling94%Measure swelling
      Use elastic tights89%Use elastic tights
      Reduce salt88%Reduce salt
      Review diet for hidden sodium88%Review diet for hidden sodium
      Reduce liquids76%Reduce liquids
      Weight gainTake medication (e.g., diuretic)100%Take medication
      Contact health care provider100%Contact health care provider
      Check for other symptoms100%Check for other symptoms
      Decrease salt88%Decrease salt
      Limit fluid71%Not retained
      Decrease in urineContact health care provider94%Contact health care provider
      Rest during day to increase renal circulation41%Not retained
      Shortness of breath while lying downCall health care provider100%Contact health care provider
      Take medication (e.g., diuretic, nitroglycerin)94%Take medication
      Use extra pillows at night94%Use extra pillows
      Limit fluid and salt72%Not retained
      Swollen bellyCheck for constipation94%Check for obstipation
      Call health care provider94%Contact health care provider
      Take medication (e.g., diuretic)78%Take medication
      Limit fluid67%Not retained
      ThirstSuck on ice cube78%Such on ice cube
      Suck on lemon slices61%Not retained
      Chronic Obstructive Pulmonary Disease
      CoughingTake medication (e.g., inhaler/bronchodilator)90%Take medication
      Cough to clear airway90%Cough to clear throat/airway
      Reposition to promote effective cough90%Reposition to cough more easily
      Contact health care provider90%Contact health care provider
      Splint with a pillow when coughing70%Not retained
      Hydrate (1.5 L per day)70%Not retained
      Postural drainage50%Not retained
      Chest physical therapy (e.g., percussion)50%Not retained
      Hypoxemia (O2<88%)Sit upright100%Sit upright
      Stop activity90%Stop activity
      Cough to clear airway90%Cough to clear airway
      Breathing exercises to improve airflow90%Breathing exercises to improve airflow
      Increase supplemental oxygen80%Increase supplemental oxygen
      Contact health care providerComContact health care provider
      Loss of appetiteEat small meals100%Eat small meals
      Prepare goods that smell and look good90%Prepare goods that smell and look good
      Eat your favorite foods80%Eat your favorite foods
      Avoid greasy or fried foods89%Avoid greasy or fried foods
      Eat with other people to make it social80%Eat with other people to make it social
      Seek advice of a dietician80%Seek advice of a dietician
      Shortness of breathTake medication (e.g., inhaler, steroid)100%Take medication
      Assume a tripod position for breathing100%Assume a tripod position for breathing
      Do breathing exercises (e.g., pursed lip breathing)100%Do breathing exercises (e.g., pursed lip breathing)
      Use oxygen90%Check saturation and use oxygen (if applicable)
      Stop activity90%Stop activity
      Take slow deep breaths80%Take slow deep breaths
      Use a positive expiratory pressure (PEP) device78%Use a positive expiratory pressure (PEP) device
      WheezingTake medication (e.g., inhaler)100%Take medication
      Contact health care providerComContact health care provider
      Stop or slow down activityComStop or slow down activity
      Acute shortness of breathTake medication100%Take medication
      Contact health care provider100%Contact health care provider
      Call emergency services/911100%Contact emergency services
      FeverTake medication80%Take medication
      Stay hydrated90%Stay hydrated
      Fatigue/tirednessExercise100%Engage in as much physical activity as you can
      Adapt activity90%Adapt the activity that is less tiring
      Asthma
      CoughingTake medication (e.g., inhaler)100%Take medication
      Deep breathing exercises (slow, deep breaths)100%Deep breathing exercises (slow, deep breaths)
      Avoid allergens/triggersComavoid thing that trigger cough
      Fatigue/ tirednessEngage in as much physical activity as tolerated100%Engage in as much physical activity as you can
      Balance rest & activity88%Balance rest & activity
      Plan out activities88%Plan out activities and prioritize activities that mean the most
      Take medication (e.g., extra bronchodilator dose)88%Take medication
      Distract self through doing activities63%Not retained
      Shortness of breathTake medication100%Take medication
      Assess for triggers (e.g., allergens, environment)100%Assess for triggers (e.g., allergens, environment)
      Use relaxation techniques100%Use relaxation techniques
      Contact health care provider100%Contact health care provider
      Stop activity88%Stop activity
      Take slow deep breaths75%Take slow deep breaths
      Do breathing exercises (e.g., pursed lip breathing)75%Do breathing exercises
      Assume tripod position for breathing63%Not retained
      WheezingAvoid allergens100%Avoid things that trigger wheezing
      Take medication (e.g., inhaler)100%Take medication
      Seek advice on allergy medication75%Seek advice on allergy medication
      Contact health care providerComContact health care provider
      Acute shortness of breathTake medication100%Take medication
      Contact health care provider100%Contact health care provider
      Contact emergency services/911100%Contact emergency services
      Wear a face mask during cold weather63%Not retained
      Stop or slow down activityComStop or slow down activity
      Diabetes mellitus type 2
      Hypergly-cemia Symptom clusterCheck blood sugar100%Check Blood Sugar
      Check insulin site (if applicable)100%Check insulin site (if applicable)
      Take insulin100%Take Insulin
      Drink water100%Drink Water
      Modify diet (e.g., fewer fast acting carbs)93%Modify diet (e.g., fewer fast acting carbs)
      Call health care provider93%Contact health care provider
      Check urine for ketones87%Check urine for ketones
      Exercise87%Exercise
      Sour or tart drinks21%Not retained
      Suck on ice cube14%Not retained
      Hypogly-cemia Symptom clusterCheck blood glucose100%Check Blood glucose
      Eat a fast acting carbohydrate100%`Eat a fast acting carbohydrate or glucose tablet/gel
      Recheck blood glucose after eating fast-acting carbs100%Recheck blood glucose after eating fast-acting carb/glucose
      Take glucose tablets/gel93%Take glucose tablet/gel
      Adjust insulin dose93%Adjust insulin dose
      Call health care provider93%Contact health care provider
      Rest80%Rest
      Diarrhea/ constipationCall health care provider93%Contact health care provider
      Take Metformin with food73%Not retained
      Adjust dose of Metformin73%Not retained
      Fat accumula-tion at insulin injection siteRotate the injection site80%Rotate the injection site
      Use a 4 mm needle73%Not retained
      Gum problemsContact dentist100%Contact dentist
      Use a fluoride mouth rinse73%Not retained
      Foot woundsKeep space between toes dry100%Keep space between toes dry
      Contact podiatrist87%Contact podiatrist
      Do not get a pedicure until wounds heal60%Not retained
      Cramps in lower limbsWear supportive comfortable footwear80%Wear supportive comfortable footwear
      Eat foods rich in Calcium, Potassium, and Magnesium53%Not retained
      Rest47%Not retained
      High blood pressureReduce salt intake100%Reduce salt intake
      Exercise regularly100%Exercise
      Engage in stress relieving activities80%Do stress relieving activities
      Adjust medication73%Not retained
      Sensitivity to touch and vibrationExercise87%Exercise
      Take medication (e.g., NSAID, Capsaicin Cream)33%Not retained
      Supplement Vitamin D with sunlight or pill60%Not retained
      Supplement Vitamin B Complex60%Not retained
      Soak in a warm bath67%Not retained
      Arthritis
      Fatigue/ tirednessBalance rest & activity100%Balance rest & activity
      Engage in as much physical activity as tolerated100%Engage in as much physical activity as you can
      Distract self through doing activities100%Distract self through doing activities
      Plan out activities100%Plan out activities and prioritize activities that mean the most
      Joint painTake medication100%Take medication
      Physical activity100%Physical activity
      Rest100%Rest
      Distract self through doing activities100%Distract self through doing activities
      Use a disability aid100%Use a disability aid
      Stretch75%Stretch
      Water therapy75%Water therapy
      Apply cold75%Apply cold
      Elevate the affected joint75%Elevate the painful joint
      Apply heat50%Not retained
      Contact health care provider50%Not retained
      Massage25%Not retained
      Joint stiffnessApply heat100%Apply heat
      Water therapy/pool therapy100%Water therapy/pool therapy
      Take a warm shower100%Take a warm shower
      Physical activity100%Physical activity
      Joint swelling, redness, and/or warmthRest100%Rest
      Apply cool100%Apply cool
      Contact health care provider100%Contact health care provider
      Take medication75%Take medication
      Elevate the affected joint75%Elevate the joint
      Physical limitation/activity limitationAdapt the activity100%Adapt the activity
      Seek assistance100%Seek help completing the activity
      Use disability aid100%Use disability aid (for example, cane or walker)
      Range of motion exercises100%Do range of motion exercises
      Rest100%Rest
      Contact health care provider50%Not retained
      *items with <75% agreement were removed; **analyzed by the research team.
      Abbreviations: Com, comments of clinicians; PA, percent agreement.

      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 self-care 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.
      Table 4Meaningful comments of clinicians of Delphi round 1 and 2.
      TopicsResultsCitations from clinicians
      Tailoring recommended behavior to the cause of the symptom, patients’ situation and clinicians’ preferenceClinicians often commented that their decision to advise specific behaviors depends on the cause of the symptoms and need to be tailored to the situation of the patient. 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]
      “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 behaviorsSome 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]

      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 self-care 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.
      • Swennen M.H.
      • van der Heijden G.J.
      • Boeije H.R.
      • van Rheenen N.
      • Verheul F.J.
      • van der Graaf Y.
      • et al.
      Doctors' perceptions and use of evidence-based medicine: a systematic review and thematic synthesis of qualitative studies.
      • Poitras M.E.
      • Maltais M.E.
      • Bestard-Denommé L.
      • Stewart M.
      • Fortin M
      What are the effective elements in patient-centered and multimorbidity care? A scoping review.
      • Gobeil-Lavoie A.P.
      • Chouinard M.C.
      • Danish A.
      • Hudon C.
      Characteristics of self-management among patients with complex health needs: a thematic analysis review.
      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.
      • Swennen M.H.
      • van der Heijden G.J.
      • Boeije H.R.
      • van Rheenen N.
      • Verheul F.J.
      • van der Graaf Y.
      • et al.
      Doctors' perceptions and use of evidence-based medicine: a systematic review and thematic synthesis of qualitative studies.
      In 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.
      • Damman K.
      • Tang W.H.
      • Felker G.M.
      • Lassus J.
      • Zannad F.
      • Krum H.
      • et al.
      Current evidence on treatment of patients with chronic systolic heart failure and renal insufficiency: practical considerations from published data.
      • McDonagh T.A.
      • Metra M.
      • Adamo M.
      • Gardner R.S.
      • Baumbach A.
      • Böhm M.
      • et al.
      Corrigendum to: 2021 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: developed by the task force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC) with the special contribution of the Heart Failure Association (HFA) of the ESC.
      • McAlister F.A.
      • Ezekowitz J.
      • Tonelli M.
      • Armstrong P.W.
      Renal insufficiency and heart failure: prognostic and therapeutic implications from a prospective cohort study.
      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.
      • Inzucchi S.E.
      • Bergenstal R.M.
      • Buse J.B.
      • Diamant M.
      • Ferrannini E.
      • Nauck M.
      • et al.
      Management of hyperglycemia in type 2 diabetes, 2015: a patient-centered approach: update to a position statement of the American Diabetes Association and the European Association for the Study of Diabetes.
      ,
      • Holt R.I.G.
      • DeVries J.H.
      • Hess-Fischl A.
      • Hirsch I.B.
      • Kirkman M.S.
      • Klupa T.
      • et al.
      The management of type 1 diabetes in adults. A consensus report by the American Diabetes Association (ADA) and the European Association for the Study of Diabetes (EASD).
      Although 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.
      • Lenferink A.
      • Brusse-Keizer M.
      • van der Valk P.D.
      • Frith P.A.
      • Zwerink M.
      • Monninkhof E.M.
      • et al.
      Self-management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease.
      ,

      GOLD Report Available from: https://goldcopd.org/2022-gold-reports-2/. Accessed December 28, 2021.

      In routine clinical care, the problem of providing recommendations that lack evidence and/or do not comply with clinical guidelines is well-known.
      • de Ruijter D.
      • Smit E.S.
      • de Vries H.
      • Goossens L.
      • Hoving C.
      Understanding Dutch practice nurses' adherence to evidence-based smoking cessation guidelines and their needs for web-based adherence support: results from semistructured interviews.
      ,
      • Smolders M.
      • Laurant M.
      • Verhaak P.
      • Prins M.
      • van Marwijk H.
      • Penninx B.
      • et al.
      Which physician and practice characteristics are associated with adherence to evidence-based guidelines for depressive and anxiety disorders?.
      Underutilization 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.
      • Swennen M.H.
      • van der Heijden G.J.
      • Boeije H.R.
      • van Rheenen N.
      • Verheul F.J.
      • van der Graaf Y.
      • et al.
      Doctors' perceptions and use of evidence-based medicine: a systematic review and thematic synthesis of qualitative studies.
      ,
      • de Ruijter D.
      • Smit E.S.
      • de Vries H.
      • Goossens L.
      • Hoving C.
      Understanding Dutch practice nurses' adherence to evidence-based smoking cessation guidelines and their needs for web-based adherence support: results from semistructured interviews.
      Furthermore, adoption of disease-specific guidelines is also influenced by organizational, cultural, and practical factors.
      • de Ruijter D.
      • Smit E.S.
      • de Vries H.
      • Goossens L.
      • Hoving C.
      Understanding Dutch practice nurses' adherence to evidence-based smoking cessation guidelines and their needs for web-based adherence support: results from semistructured interviews.
      ,
      • Smolders M.
      • Laurant M.
      • Verhaak P.
      • Prins M.
      • van Marwijk H.
      • Penninx B.
      • et al.
      Which physician and practice characteristics are associated with adherence to evidence-based guidelines for depressive and anxiety disorders?.
      For 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.
      • Swennen M.H.
      • van der Heijden G.J.
      • Boeije H.R.
      • van Rheenen N.
      • Verheul F.J.
      • van der Graaf Y.
      • et al.
      Doctors' perceptions and use of evidence-based medicine: a systematic review and thematic synthesis of qualitative studies.
      In 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.
      • Jaarsma T.
      • Nikolova-Simons M.
      • van der Wal M.H.
      Nurses' strategies to address self-care aspects related to medication adherence and symptom recognition in heart failure patients: an in-depth look.
      ,
      • van der Wal M.H.
      • Jaarsma T.
      • Moser D.K.
      • van Gilst W.H.
      • van Veldhuisen D.J.
      Qualitative examination of compliance in heart failure patients in The Netherlands.
      This 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.
      • Parker C.N.
      • Van Netten J.J.
      • Parker T.J.
      • Jia L.
      • Corcoran H.
      • Garrett M.
      • et al.
      Differences between national and international guidelines for the management of diabetic foot disease.
      Our 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.
      • Hagenhoff B.D.
      • Feutz C.
      • Conn V.S.
      • Sagehorn K.K.
      Moranville-Hunziker M. Patient education needs as reported by congestive heart failure patients and their nurses.
      Further 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.
      • Jaarsma T.
      • Nikolova-Simons M.
      • van der Wal M.H.
      Nurses' strategies to address self-care aspects related to medication adherence and symptom recognition in heart failure patients: an in-depth look.
      How 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 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.
      • Hasson F.
      • Keeney S.
      • McKenna H.
      Research guidelines for the Delphi survey technique.
      Prior to starting the study, we decided that two Delphi rounds should be sufficient,
      • Hasson F.
      • Keeney S.
      • McKenna H.
      Research guidelines for the Delphi survey technique.
      ,
      • Keeney S.
      • Hasson F.
      • McKenna H.
      Consulting the oracle: ten lessons from using the Delphi technique in nursing research.
      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-to-face 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 self-care 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

      Acknowledgment

      We would like to acknowledge the clinicians who participated in this Delphi study for their time and sharing their expertise.

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