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Patient-centered Needs Assessment: Rationale for a Psychometric Measure for Assessing Needs in Heart Failure

Davidson, Patricia MEd, PhD, RN, ICNC, MRCNA; Cockburn, Jill MSc, PhD; Daly, John BHSc, MEd(Hons), PhD, RN, FINE, FCN(NSW), FRCNA; Fisher, Rob Sanson PhD

The Journal of Cardiovascular Nursing: May-June 2004 - Volume 19 - Issue 3 - p 164–171
Articles: Measurement
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Determining an individual's unique perspective of an illness experience remains a challenge for clinicians, administrators, and researchers. A range of concepts and psychometric measures have been developed and evaluated to capture this information. These include patient satisfaction, quality of life, and utility measures. Needs assessment as a tool for evaluating perceptions of health status and determining patient satisfaction and treatment plans has been explored in oncology. Studies have demonstrated that a high proportion of patients have unmet needs in relation to activities of daily living, information sources, and comfort. Heart failure (HF), a condition with significant individual and societal burden, mirrors the illness of experience of cancer, as individuals process issues related to prognosis, treatment regimens, and decreased functional status. A needs-based assessment of health status, expectations, and perceptions is patient-centered and has the capacity to not only evaluate current health status but also plan and project care plans. Needs assessment is a dynamic construct rather than a point in time consistent with other assessment modalities, such as quality of life. Multidimensional needs assessment allows for planning and projection of needs, not only on an individual but also a population basis. Implicit in the exploration of needs is an expectation of level of care to be provided, from both the provider and recipient of care. In many instances a misalignment may exist between services and resources available to the individual. This article seeks to provide a theoretical justification for the development of a needs assessment instrument for patients with HF and to discuss the rationale of this method of assessment to create better alignment and resources with patients needs and expectations.

Associate Professor of Nursing, School of Nursing, Family and Community Health, University of Western Sydney, Penrith, South DC, New South Wales, and Western Sydney Area Health Service, Sydney, New South Wales, Australia. (Davidson)

Professor, Faculty of Health, School of Medical Practice and Population Health, The University of Newcastle, New South Wales, Australia. (Cockburn)

Professor of Nursing, School of Nursing, Family and Community Health, University of Western Sydney, Sydney, Australia. (Daly)

Professor, Faculty of Health, School of Medical Practice and Population Health, The University of Newcastle, New South Wales, Australia. (Fisher)

Corresponding author Patricia Davidson, MEd, PhD, RN, ICNC, MRCNA, School of Nursing, Family and Community Health, University of Western Sydney, PO Box 1797, Penrith DC 1797, Australia (e-mail: patricia_davidson@wsahs.nsw.gov.au).

Heart failure (HF) is the only cardiovascular disease increasing in prevalence and is one of the most common causes of primary care presentations, hospitalization, and rehospitalization in the elderly. 1,2 The burden of HF, in both individual and societal terms, has given rise to a research and clinical agenda to evaluate and document health-related outcomes. This trend is linked to the need to formulate and monitor models of care that address the burden of chronic disease. 3,4 Achievement of optimal outcomes requires a treatment regimen and care plan based on patient-centered, evidence-based practice and multidimensional patient assessment. 5

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Why Do We Need to Individualize Assessment?

Beyond the realms of clinical research and therapeutic trials is the need to appreciate the individual's experience of living with HF. This information is necessary for clinicians to provide appropriate, tailored healthcare interventions for their patients. Ironically, much of the published information, in particular from randomized controlled trials, does not reflect the patient population in the “real world” of heart failure. 6,7 Thus, we cannot rely solely on the results of clinical trials to provide the information to guide management of individual patients with whom we interact daily. To be able to provide our patients with optimal care, we need to develop a means of characterizing the heterogeneous nature of the presentation of HF in the everyday world.

Care is identified as a core activity in nursing practice and a key theoretical construct in nursing knowledge. 8–12 This construct is pivotal to the philosophy and the practice of nursing. 13 In spite of a long tradition of holistic nursing theories, 14,15 acute care has historically focussed on episodic, symptom-based treatment. Nursing models often function around facilitating medically prescribed treatment regimens, with a strong focus on pharmacological and technological means to achieve symptom relief and treat underlying pathogenesis. 16 These models of care inevitably lead to fragmentation, with different members of the treatment team having “responsibility” for different aspects of care. The growing epidemic of chronic disease has questioned the utility of many of these models. This has resulted in the development of interventions and philosophical approaches that focus beyond the confines of the inpatient experience. 16–20

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Measurement of the Individual's Perspective on the Illness Experience

Measuring the individual's unique perspective on the illness experience remains a challenge for clinicians, administrators, and researchers. A range of concepts, constructs, and measures have been developed and evaluated to capture this information. These include quality of life, patient satisfaction, and utility measures. In this article, we argue for another assessment strategy—needs assessment—to be added to the resources available to nurses and other clinicians to assist in planning and evaluating patient care. To do this we will first describe the conceptual frameworks that underlie the commonly used measures of quality of life and satisfaction; second, describe a theoretical framework for needs assessment; third, explore the complementary nature of existing measures and needs assessment; and finally, explain why we believe needs assessment is an appropriate tool for assisting patients with HF to achieve best possible outcomes.

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Patient-reported Measures

Quality of life is a generic term that pertains to the measurement of the patient's day-to-day functioning. While there has been controversy over what is meant by quality of life, it is generally accepted that it is a multidimensional concept that covers several important areas or domains of a person's life including physical functioning, psychological processes, social and economic concerns, as well as spiritual and existential aspects. 21,22 Individuals' beliefs, expectations, experiences, and the unique perception of their lived experience influence these domains. 23–26

Utility measures and standard gamble techniques have evolved out of economic theory in efforts to derive a quantification of quality of life. 27,28 Hypothetical scenarios are often conceptually difficult for patients, despite the convenience of single scores for measurement and analysis. This reductionist methodology, albeit useful in the area of economic analysis, belies the complexity of the multidimensional construct of quality of life and provides limited information for the clinician.

Nurse theorists, such as Parse, 29 consider the concept of quality of life to be dependent on the perspective of the individual. Although it is important to acknowledge the uniqueness of each individual's perspective, it is also important to be able to measure this dimension in order to monitor health-related outcomes, document the impact of healthcare interventions, and plan and project population healthcare needs. Significantly, in an environment of evidence-based practice and measurement of outcomes, assessing outcomes of nursing interventions is fraught with challenges due to the nonlinear nature and complexity of healthcare provider-patient interactions. The capacity to measure nurses' ability to meet the individual's need is both intriguing and appealing, particularly given the emphasis in healthcare on being able to measure the impact of interventions. 30

A growing body of evidence documents the impact on quality of life for patients with HF. However, a meta-analysis by Kinney revealed that only 57% of published data claiming to be measuring quality of life defined quality of life and two thirds of these studies did not capture quality of life as a multidimensional construct. 31 From a measurement perspective, quality of life is a continuum with a higher and lower range. Quality of life is the score of individuals' summation of their perceptions of a situation. It is derived from individual experience and is dependent on both time and situation. 32 It can be argued that this summative conceptualization belies the complexity and multidimensional construct of the phenomenon of living with HF. Qualitative studies of patients with HF reveal a complex interaction of social, economic, physical, environmental, psychological, emotional, spiritual, and treatment factors. 33 Significantly, some interventions, such as palliative care, have an impact on subjective well-being but not necessarily traditional endpoints such as mortality. 34 Further, Nordenfeldt comments that in chronic illness a significant amount of suffering is of the cognitive- emotional kind that can easily be overlooked within a biomedical framework of care delivery and evaluation. 35

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Why Involve Patients at All—Can't We Ask Clinicians to Make This Judgment?

The subjectivity of quality of life assessment and the inability of health professionals to evaluate it for their patients have been demonstrated in many settings. The US multicentre SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) study has provided evidence of the disparity between physicians' description of severity of symptoms and that of patients. 36 Stephens and coworkers report that doctors underestimated physical symptom severity 15% of the time. 37 Similar disparities in perception of patients' physical and psychosocial experiences have been observed in an oncology clinic. 38 Several nursing studies have identified that nurses tend to prioritize physical needs and those that nurses perceive to be urgent. 39,40 These findings underscore the importance for health professionals to accurately determine and document individual's needs from the patients' perspective—we cannot rely on clinicians' judgments of their patients' needs.

Satisfaction as a construct is often poorly defined and thus difficult to measure. 41,42 Sheppard defines patient satisfaction as the extent to which individuals feel either positive or negative about an intervention. 41 Despite the prevalence of patient satisfaction measures, these measures have several limitations. First, measurement of overall satisfaction with hospital and medical care is generally scored highly, thereby lacking sensitivity to identify scope for change. Second, measures often lack the rigor of psychometric development and evaluation. Third, recall bias and outcomes undoubtedly alter measurement. 42 The agenda for patient satisfaction measures is often unidimensional, measuring organizational services and attributes, and is often driven by an agenda for quality assurance and/or a desire to gather information for marketing and administrative purposes. However, the concept of satisfaction is multidimensional, embracing not only experiential issues but expectations as well. It is argued that patient satisfaction surveys do not capture the diversity of feelings, experiences, and values of the individual. 43,44

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Needs Assessment as a Psychometric Tool

The concept of needs assessment as a tool for evaluating perceptions of health status and determining patient satisfaction and treatment plans has been explored in the area of oncology and mental health nursing. Many nursing theorists have described the importance of considering individual's needs; however, the measurement of this construct has not been explored extensively, particularly the potential to psychometrically quantify this construct. 24–26 This novel psychometric assessment of health status evaluation and perceptions is patient-centered. The conceptual framework for this model, in relation to quality of life and patient satisfaction, is described in Figure 1.

Figure 1

Figure 1

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Theoretical Framework for Needs Assessment

Parse writes that the embellishment of a discipline is dependent on the critique of existing scholarly works. 29 Chinn and Kramer further posit that nursing theories and models form the basis for nursing practice. 45 As part of the development of the theoretical framework for the needs assessment measures, this research team has undertaken a dynamic and eclectic review of nursing and non-nursing theorists. Key positions contributing to the development of the framework are described further below.

Maslow's Hierarchical Theory of Needs was developed in the late 1960s, and describes a stepwise progression where physiological needs are placed at the bottom, and higher level human needs at the top. This hierarchic theory can be seen as a pyramid, where lower levels represent basic physical needs and higher levels represent self-actualization needs. Despite 7 discrete levels of the pyramid, there is dependence and interrelationship between each level. 46 While Maslow suggests a hierarchical approach to needs, some writers state that the individual's spiritual dimension can run parallel to physiological, psychological, and social considerations. 9

Meleis classifies Abdellah, Henderson, and Orem as needs theorists, and these perspectives have shaped our interpretation of individual's needs. 47 Watson, a humanistic, needs/problem-oriented theorist, identifies caring as the most valuable attribute nursing has to offer humanity; yet over time this attribute has been subsumed by the power base of the biomedical model. Watson believes that even though an illness may be cured from a physiological perspective, sickness may remain without care of social, psychological, emotional, and spiritual concerns. Watson's structure for the science of caring is built upon 10 carative factors and allows for the individual to move between each level dependent on physical and functional status in synchrony with the illness trajectory. Watson's theoretical framework emphasizes exploration of existential needs and consideration of end-of-life issues. 8–12 The unpredictable illness trajectory of HF, as described in Figure 2, demonstrates that an individual with HF has a life experience often punctuated by periods of decompensation and in the situation of acute pulmonary edema, sometimes near-death experiences. 48

Figure 2

Figure 2

The compartmentalization and categorization of needs overtly belies the complexity of the individual's biopsychosocial symmetry. Maslow and Watson's hierarchical perspectives describe needs from a philosophical perspective, which is important to understand transitions through life and inform clinical practice. Appreciation of these attributes is likely relegated to the advanced practice nurse. In order to effectively care for patients with HF, we also need to be able to document needs at the level of the individual patient and their family. Minshull and coworkers have adapted Maslow's concept of human needs to create a useful conceptual framework, The Human Needs Model of Nursing, for practice needs. 49 This model emphasizes patient problems, which arise as the result of unmet needs at higher as well as those at lower levels, accentuating the dynamic state of human existence. This perspective stresses the importance of addressing all human needs, such as emotional and existential issues, particularly in busy clinical environments.

Foot and Sanson-Fisher, 50,51 in order to understand and appreciate individual needs within oncological practice, developed the psychometric concept of needs assessment. Bonevski 52 and Rainbird 53 have further developed this concept. These studies have demonstrated that a high proportion of patients have unmet needs in relation to activities of daily living, information sources, and comfort. In many instances services and resources available to the individual may be malaligned. Needs assessment allows patients to evaluate the care that they receive from their family and from health service, thereby allowing their perceptions of any “deficits”—these are interpreted as unmet needs. In most instances, this information can only be obtained by asking the patient. For example, in assessing information needs, only the patients are able to say whether they have sufficient information to understand how the disease will be affecting their lives. If the patients still desire more information, then they potentially have an unmet need for information or this may be indicative of a level of distress and/or perplexity with their illness experience. The documentation of a need is just a flag to the health professional that the individuals perceive a deficit or deficiency in either their care or life situation.

Disease-specific needs assessment measures have been evaluated as being responsive, valid and reliable measures for evaluating patient needs. 50–52 Not only do these measures represent a snapshot at a moment in time of the individual's social, psychological, physical, and existential status, but also quantify the deficit between patients' expectations and their perceived reality, as illustrated in Figure 1. This perceived deficit or unmet need allows the health professional to plan and project care plans to minimize the variance between expectations and perceived reality. As discussed above, HF bears many similarities to that of oncological disorders in that it usually has an adverse impact on the individual's quality of life. In many instances, HF portends a worse prognosis than many cancers. 2,54 A critical review of the literature suggests a range of unmet needs across a range of constructs. 55–58

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How Do the Concepts of Needs Assessment and Quality of Life Relate to Each Other?

Peplau, an interaction-oriented theorist, considers that quality of life is a personal perception closely related to needs. 59 Needs such as food, clothing, shelter, and warmth are evident in times of crisis and relevant to that experience. She further considers that compassion, closeness, sympathy, and sharing are also significant in meeting essential interpersonal needs. Crises highlight reliance on human relationships of all types and reflect the interdependence of relationships at all levels. Interpersonal relationships are important throughout most of the life cycle relationships in which trust and sincerity are of significant importance. This fact is significant in both personal and professional relationships. 59

Peplau further comments that there is an assumption that relationships between healthcare professionals and patients are assumed to be constructive and enhancing of quality of life but this is not always the case. 60 We know that patriarchal models of care and an inequity in power relationships potentially impact negatively upon a patient's quality of life. Interaction-oriented theorists focus on the communication process in addressing needs of the individual. 59

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Delivering Quality Care Tailored to Individual Patient's Needs

There is an assumption that healthcare relationships will focus upon improving quality of life; therefore these interventions should be predicated by an understanding of individual needs. Exploration of needs provides salient information on all life domains to complement existing measurements related to quality of life. Unlike other assessment tools, needs assessment provides data on patients' perceptions of their existing health status while also quantifying needs not addressed in current management plans. Such information is useful for education and planning, and can also be used for the development and intervention of further research initiatives and interventions.

Although needs assessment and quality of life are multidimensional concepts and should cover the main domains that describe life functions (eg, physical, social, psychological, emotional, and spiritual), needs assessment is more “dynamic” than quality of life, because peoples' needs tend to change more rapidly, and it can be extrapolated that addressing these needs may contribute considerably to an individual's perceptions of quality of life. For example, dying patients actually rate their quality of life relatively high, which is often in stark contrast to individual clinician's perception of what patient experiences may be. Nursing theorists such as King describe the process of health as a dynamic process of continual adjustment to internal and external resources. 61

Implicit in the assessment of needs is the individual's perception and weighting of constructs. Needs assessment and quality of life are not independent, but should be seen as complementary systems and interacting systems. For example, if people need an aid that would assist them to walk independently, and if they do not have access to this aid, it stands to reason that this deficit would affect that person's physical (and possibly psychological and social) quality of life. This also suggests ways of intervening to improve quality of life—by assessing individuals' health-related needs and ensuring that they are met, wherever feasible. This also works in reverse: if the individuals' quality of life decreases through ill health, their health-related needs also change. The illness trajectory of HF described in Figure 2 represents an inevitable decline punctuated by periods of improvement and paradoxical decline. The lack of predictability of the illness trajectory, compared with malignant conditions such as colon cancer, is also illustrated. This variation in illness pattern in concert with other life factors, such as decline in health status of partner, alters the individuals' needs.

Most healthcare organizations are driven by a mission to meet the needs of consumers. Ascertaining, documenting, and evaluating consumer needs is fraught with conceptual, methodological, and psychometric challenges. The ability to assess and document the needs of consumers is an engaging concept to determine the ability of organizations to meet the current needs of consumers and project for future service development. Needs assessment encapsulates not only patient's satisfaction but also the variance between experience and expectations.

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Why Does a Disease-Specific Needs Assessment Lend Itself to HF?

HF is a complex interface of pathophysiological processes that results in a syndrome eventuating from inadequate cardiac output and neurohormonal activation. 62 The primary cause of HF is cardiac muscle dysfunction due to varying aetiologies, the most common being hypertension and ischaemic heart disease. 1,2 Despite therapeutic advances, HF remains a disease with high mortality rates and poor quality of life as compared with age-matched controls and significant socioeconomic burden. 54 Organic and psychological comorbidities often accompany heart failure, which further adds to the complexity of clinical management and assessment of this patient group. Monitoring of the disease management of HF is appropriate to a needs assessment model. Heart failure has many parallels to a diagnosis of malignancy and imparts consideration of a primacy of relationships. As stated previously, the utility of needs assessment has been favorably evaluated in the oncology population. Moreover, needs assessment has the potential of evaluating the efficacy of an intervention to meet patient needs and identifying aspects of care that require modification of treatment strategies.

A dynamic, considered approach to instrument development is of equal importance to item generation and determination of reliability and validity. Concepts are the elements used to generate theory development. Concepts, models, and theories formulate the foundation of informed, considered practice. 64,65 Theories should serve to formulate a sound, epistemological basis for instrument development as well as clinical practice. 64 Further, theoretical frameworks direct and guide practice and should be responsive to dynamic social, political, and economic trends. Theories that have evolved from observation of clinical practice and interactions have relevance and applicability for practitioners and lend themselves to construction and development of nursing knowledge and practice.

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Conclusions and Recommendations for Clinical Practice and Research

Acknowledging the unique perspective and needs of patients is instrumental in knowing the patients as persons and tailoring care to their individual requirements. Tanner and colleagues comment that knowing the patient is central to skilled clinical judgment and sets the scene for patient advocacy and for learning about patient populations. 65 Capturing data related to current and projected needs of the HF patient has significant potential in determining current and future healthcare services. Measurement of interventions and workload in nursing is fraught with methodological difficulties and encumbered by the biomedical constraint of traditional endpoints. A valid and reliable needs assessment is a novel method of capturing the unique needs of the individual within the HF illness trajectory and evaluating the efficacy of nursing and other interventions.

Informed and guided by the theoretical frameworks, described above, we have developed and evaluated the Heart Failure Needs Assessment Questionnaire (HFNAQ), a 30-item disease-specific measure, to evaluate needs within a multidimensional framework. 66 Item generation for this instrument has been derived from qualitative interviews, literature review, and expert opinion. Psychometric evaluation has identified needs assessment as a theoretically and psychometrically robust tool with strong internal consistency (Cronbach alphas of .74280–.80). Items of the HFNAQ, illustrating the multidimensional elements of the measure, and the complex interplay of physical, psychological, social, and spiritual/existential factors are described in Table 1.

Table 1

Table 1

The multifaceted complexity of the individual's response to illness demands innovative methodological approaches to measurement and management. 67 In the United States, along with most other industrialized countries, HF is a common reason for hospitalization and therefore under intensive scrutiny from health administrators and providers. Environments of economic rationalism and fiscal constraint compel health professionals to measure the impact of interventions on patient outcomes. 68–72 The ability to be able to measure the capacity of an intervention to meet the needs of individuals by use of a validated psychometric measure should be a valuable tool for clinical practice, outcome evaluation, and research.

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Keywords:

heart failure; needs assessment; psychometric measure

© 2004 Lippincott Williams & Wilkins, Inc.