- Kuntuganova, Instructor, MBA, NUSOM, Kazakhstan
- Vaartio-Rajalin, Professor in gerontological care (tenure track), docent, Åbo Akademi University, Finland
Aim: The aim of this essay is to describe the reflextions concerning advanced nursing care of patients with chronic heart failure
Methods: a theoretical-reflective essay, conducted in a dialectical process between evidence-based literature, theoretical framework and reflection.
Results: The existing clinical guideline for nurses “Chronic Heart Failure: Clinical Guidelines for Nursing Development” could be further developed. The Middle‐Range Theory of Symptom Management could be applied into CHF nursing care with regard to patients´ symptom perceptions, their perceptions on symptom management and on the nursing sensitive outcomes. This would involve the patient and family members into the process of decision-making concerning one´s care, and ensure the necessary emotional support during the illness trajectory.
Keywords: Complex conditions, Chronic heart failure, Advanced nursing care, Nursing theory
Heart failure, also called as congestive heart failure (CHF), is a long-term condition that develops when your heart doesn’t pump enough blood for your body’s needs . According to the nursing Theory of symtom management [2, page 147] a symptom is defined as: “a subjective experience reflecting changes in the biopsychosocial functioning, sensations, or cognition of an individual”. Patients with CHF generally report multiple symptoms, including dyspnea on exertion, fatigue, and peripheral edema, and others. As CHF is a progressive disease, the above mentioned and other symptoms occur even in clinically stable people. [3.] An important feature of the symptom experience is that HF patients experience multiple symptoms simultaneously, and those symptoms are associated with adverse outcomes [4-7].
This essay is based on a course material received at EU-financed project AccelEd and the course “Nursing theories and research on patients with complex and long-term health needs” within it. In addition, articles and information were searched from databases CINAHL, PubMed, Google Scholar and Web of Science. Data search was limited to 2000 to the present, with focus on symptom burden in CHF over time. The search yielded 312 studies. After applying the inclusion criteria (original research studies or systematic reviews in peer-reviewed journals that examined symptoms/symptom clusters and quality of life in adult >18 years old patients with HFe) there were 13 studies remaining. These studies identified variety of the symptoms and symptom clusters within HF and the PREMs (patient recorded experience measures) and PROMs (patient recorded outcome measures) designated to measure the perceptions of patients on their symptoms and medical care received.
Majority of studies found an association between the symptoms and level of the HF patients’ quality of life [3-5, 8-10). Moser and other researchers  reported that symptoms clustered similarly among the diverse cultural groups studied. Thus, they suggest use of universal terms for symptom expression and symptom clustering. According to Smith et al. , fatigue and vital exhaustion are symptom clusters that are frequently reported by patients with CHF. Also Alpert et al.  reported that untreated symptoms increase clinical events including emergency cases, hospitalizations, and mortality.
Within advanced nursing care, also the social vulnerability of CHF patients should be taken into consideration. Without adequate social support, patients with heart failure are more likely to be medication nonadherent . Support might be provided by healthcare providers, caregivers such as spouse, a partner, family members, and friends . ). As well, heart failure needs quite high level of patient engagement and self-management. A patient’s self-management requires a level of knowledge and understanding about heart failure and skills to identify the signs and symptoms at early stage. Obviously, the more educated patients on issues of the disease, treatment methods, and rehabilitation, the more they involved in the decision-making, the lower indicators of morbidity, mortality, hospital stays, etc. All the medical professionals must provide comprehensive and accurate information in language, which is suitable, usable, clear and accessible for a diverse population and family members. .
Salidat Kairbekova National Research Center for Health Development has developed a clinical guideline for nurses “Chronic Heart Failure: Clinical Guidelines for Nursing Development (PHC and Hospital): Adapted Clinical Nursing Guidelines”, which has been approved by the Ministry of Health of the Republic of Kazakhstan. The guideline  includes recommendations for extended practice nurses on diagnosis, lifestyle changes in patients with CHF to reduce the risk and progression of heart failure, monitoring the side effects of pharmacological therapy, organizing and planning to improve care to maintain quality of life, and palliative care. However, one critical element missed in the guideline is lack of concrete nursing methods involving the patient and family members into the process of discussion and decision-making, and ensuring the emotional support.
In order to develope the CHF guidelines towards advanced nursing care a Theory of symptom management  could be utilized to establish an effective symptom management based on three components: symptom experience, symptom management strategies, and outcomes. This would be in line with aim to study the patients’ experiences and perceptions, and to support their praticipation into decision-making concerning their own care. In advanced nursing practice it is critical to ensure patient-centeredness and to concentrate on each individual patient’s own health strategy, what the patient can him/herself do to retain and improve their health, as well as provide a feedback on what nurses can do to support him/her .
Knowledge of symptom clusters can help both patients and clinicians identify early signs of decompensation by means of questionnaires . Unfortunately, care providers often fail to address their patients’ symptomatic concerns, and this lead to even more complex situation and new problems. Regarding symptom management, the authors of the guideline  recommend that patients be closely monitored for symptoms. In addition, the authors of the guideline do not rule out adapting symptom management strategies, and specific tools for symptom assessment and analysis are not given except New York Heart Association (NYHA) functional class. Based on literature analysis, there exists several relevant, validated instruments available:
|Article||Symptoms / Symptom Clusters||Assessment tools|
|||3 symptom clusters: sickness behavior, discomforts of illness, and GI distress||Hospital Anxiety and Depression Scale,
Cardiovascular Limitations and Symptoms Profile,
Dyspnea sub-scale, Brief fatigue inventory,
10 cm Visual Analog Scale, etc.
|||28 symptoms and symptom distress (most common – shortness of breath, lack of energy, pain, feeling drowsy, or dry mouth), depression, and heart failure-related quality of life||Memorial Symptom Assessment Scale-Short Form,
Geriatric Depression Scale-Short Form (GDS-SF),
Kansas City Cardiomyopathy Questionnaire (KCCQ)
|||The most prevalent symptoms were lack of energy, dry mouth, shortness of breath, and drowsiness||Charlson Comorbidity Index (CCI),
Short Portable Mental Status Questionnaire (SPMSQ), Memorial Symptom Assessment Scale (MSAS),
Mental Health Inventory-5 (MHI-5),
Sickness Impact Profile (SIP),
Multidimensional Index of Life Quality (MILQ),
Functional Assessment of Chronic Illness Therapy-
Spirituality Scale (FACIT-Spirituality)
|||Dyspnea during day time, dyspnea when lying down, fatigue, chest pain, edema, sleeping difficulties, and dizziness or loss of balance||Symptom and Symptom Stability subscales of the Kansas City Cardiomyopathy Questionnaire (KCCQ),
Memorial Symptom Assessment Scale (MSAS),
MSAS-HF, Heart Failure Somatic Perception Scale (HFSPS)
|||Three unique symptom clusters: Acute Volume Overload, Emotional, and Chronic Volume Overload||Minnesota Living with HF Questionnaire|
|||Physical symptom cluster (20 symptoms), psychological symptom cluster (6 symptoms), and heart failure symptom cluster (5 symptoms)||Chinese version of the Memorial Heart Failure Symptom Assessment Scale,
Chinese version of the Minnesota Heart Failure Quality of Life Scale
|||Shortness of breath, fatigue, and bilateral lower limb edema||Medical Outcomes Study 36-item Short Form Health Survey (SF-36), Beck Depression Inventory short form (BDI-SF)|
|||Dyspnea, difficulty in walking or climbing, fatigue/increased need to rest, and fatigue/low energy – physical capacity symptom cluster. Worrying, feeling depressed, and cognitive problems – emotional/cognitive symptom cluster. The symptoms of edema and trouble sleeping were variable among the countries and fell into different clusters||Minnesota Living with Heart Failure Questionnaire|
|||Fatigue, cognitive–affective depressive symptoms, sleep difficulties, and lack of concentration||Maastricht Questionnaire,
Minnesota Living with Heart Failure Questionnaire
|||In addition to classic symptoms such as dyspnea and edema, patients with HF frequently suffer additional symptoms such as pain, depression, gastrointestinal distress, and fatigue.||Edmonton Symptom Assessment Scale,
Kansas City Cardiomyopathy Questionnaire,
Memorial Symptom Assessment Scale
|||Chest pain or pressure, other pain, dry mouth, numbness/ tingling in hands or feet, constipation, nausea, cough, and dizziness. dyspnea, fatigue, and edema||Kansas City Cardiomyopathy
The existing CHF clinical guideline could be amented with some validated instruments measuring different symptom experiences such as Minnesota Living with HF Questionnaire, or Kansas City Cardiomyopathy Questionnaire. In addition, we need to initiate more research projects with symptom and symtom cluster assessment tools in Kazakhstan, and also studies of the association of the symptom assessment and quality of life of the patients, functional capacity, awareness and knowledge, social vulnerability and self-care ability. It is also important to organize and provide educational activities how to use PREM and PROM assessment tools based on a theory of symptom management so nurses can implement it in the practice (medical documentation, patient management, patient education, etc.) comprehensively. Another recommendation is to include information about nursing theories, which can be applied in management of patients with CHF. In conclusion, comprehensive, accurate and effective symptom assessment and management must be developed in clinical nursing practice in order to improve quality of life of the patients with CHF.
- National Heart, Lung, and Blood Institute, 2022, https://www.nhlbi.nih.gov/health/heart-failure. Retrieved in May, 2022
- ] Smith MJ, Liehr PR. (2018). Middle range theory for nursing. Fourth edition. New York, NY, Springer Publishing Company, LLC. p.147.
- ]Salyer J, Flattery M, & Lyon DE. (2019). Heart failure symptom clusters and quality of life. Heart & Lung 48(5), 366–372. https://doi.org/10.1016/j.hrtlng.2019.05.016
- ]Bekelman DB, Havranek EP, Becker DM, Kutner JS, Peterson PN, Wittstein IS, Gottlieb SH, Yamashita TE, Fairclough DL, & Dy SM. (2007). Symptoms, Depression, and Quality of Life in Patients With Heart Failure. Journal of Cardiac Failure 13(8), 643–648. https://doi.org/10.1016/j.cardfail.2007.05.005
- ]Blinderman CD, Homel P, Billings JA, Portenoy RK, & Tennstedt SL. (2008). Symptom Distress and Quality of Life in Patients with Advanced Congestive Heart Failure. Journal of Pain and Symptom Management 35(6), 594–603. https://doi.org/10.1016/j.jpainsymman.2007.06.007
- ]Heo S, An M, & Kim J. (2017). Validation of the Symptom Status Questionnaire-Heart Failure in Korean patients. Applied Nursing Research 38, 141–146. https://doi.org/10.1016/j.apnr.2017.10.015
- ]Jurgens CY, Moser DK, Armola R, Carlson B, Sethares K, & Riegel B. (2009). Symptom clusters of heart failure. Research in Nursing & Health 32(5), 551–560. https://doi.org/10.1002/nur.20343
- ]Wang G, Liu X, & Yang Q. (2020). Symptom clusters and quality of life in Chinese patients with heart failure. Collegian 27(5), 521–528. https://doi.org/10.1016/j.colegn.2019.12.001
- ]Faxén UL, Hage C, Donal E, Daubert JC, Linde C, & Lund LH. (2018). Patient reported outcome in HFpEF: Sex-specific differences in quality of life and association with outcome. International Journal of Cardiology 267, 128–132. https://doi.org/10.1016/j.ijcard.2018.04.102
- ]Arueira HB, Mesquita ET, Kang HC, Miranda VA, Ramos CS, & Garcia Rosa ML. (2012). Low quality of life as an additional criterion for the clinical diagnosis of heart failure in primary care. Revista Portuguesa de Cardiologia 31(9), 559–565. https://doi.org/10.1016/j.repc.2012.06.004
- ]Moser DK, Lee KS, Wu JR, Mudd-Martin G, Jaarsma T, Huang TY, Fan XZ, Strömberg A, Lennie TA, & Riegel B. (2014). Identification of symptom clusters among patients with heart failure: An international observational study. International Journal of Nursing Studies 51(10), 1366–1372. https://doi.org/10.1016/j.ijnurstu.2014.02.004
- ]Smith OR, Gidron Y, Kupper N, Winter JB, & Denollet J. (2009). Vital exhaustion in chronic heart failure: Symptom profiles and clinical outcome. Journal of Psychosomatic Research 66(3), 195–201. https://doi.org/10.1016/j.jpsychores.2008.10.021
- ]Alpert CM, Smith MA, Hummel SL, & Hummel EK. (2016). Symptom burden in heart failure: assessment, impact on outcomes, and management. Heart Failure Reviews 22(1), 25–39. https://doi.org/10.1007/s10741-016-9581-4
- ]Wu JR, Frazier SK, Rayens MK, Lennie TA, Chung ML, & Moser DK. (2013). Medication adherence, social support, and event-free survival in patients with heart failure. Health Psychology 32(6), 637–646. https://doi.org/10.1037/a0028527
- ]White-Williams C, Rossi LP, Bittner VA, Driscoll A, Durant RW, Granger BB, Graven LJ, Kitko L, Newlin K, & Shirey M. (2020). Addressing Social Determinants of Health in the Care of Patients With Heart Failure: A Scientific Statement From the American Heart Association. Circulation 141(22). https://doi.org/10.1161/cir.0000000000000767
- ]Жунусова ДК, Токбергенова ГТ, и Искакова ГТ. (2019) Р-84 Руководство для медицинских сестер расширенной практики по ведению больных (ПМСП и стационар). Нур-Султан: Республиканский центр развития здравоохранения. http://www.rcrz.kz/index.php/ru/2017-03-12-10-51-13/klinicheskie-rukovodstva
- ]Fagerström LM. (2021). A Caring Advanced Practice Nursing Model: Theoretical Perspectives And Competency Domains (Advanced Practice in Nursing) (1st ed. 2021 ed.).
- ]Lum HD, Carey EP, Fairclough D, Plomondon ME, Hutt E, Rumsfeld JS, & Bekelman DB. (2016). Burdensome Physical and Depressive Symptoms Predict Heart Failure–Specific Health Status Over One Year. Journal of Pain and Symptom Management 51(6), 963–970. https://doi.org/10.1016/j.jpainsymman.2015.12.328