NURSING THEORY AND CONCEPT DEVELOPMENT OR ANALYSIS

Advancing the science of symptom management

Marylin Dodd RN PHD IAAN Professor and Associate Dean, San Francisco School of Nursing, University of California, CA, USA
Susan Jansoii RN NF DNSC FAAN Professor, San Francisco School of Nursing, University of California, CA, USA

Noreen Facione RN PhD FNP

Assistant Adjunct Professor, San Francisco School of Nursing, University of California, CA, USA

Julia Faucett RN PhD

Associate Professor, San Francisco .School of Nursing, University of California, CA. USA Erika S. Froelicher RN PhD FAAN Professor, San Francisco School of Nursing, University of California, California, CA, USA

Janice Humphreys RN CS PhD PNP

Assistant Professor, San Francisco School of Nursing, University of California, CA, USA Kathryn Lee RN PhD FAAN Professor, San Francisco School of Nursing, University of California, CA, USA Christine Miaskowski RN I'hD FAAN Professor, San Francisco School of Nursing, University of California, CA, USA

Kathleen Puntillo RN DNSe FAAN

Associate Professor, San Francisco School of Nursing, University of California, CA, USA Sally Rankin RN-C PhD FAAN Associate Professor, San Francisco School of Nursing, University of California, CA, USA

and Diana Taylor RN NP PliD

Associate Professor, San Francisco School of Nursing, University of California, CA. USA

Submitted fur public^uion 22 June 2000 Accepted for publication 12 November 201)0

Correspondence: Marylin Dodd,

DOIM) M . , J A N S D N S., F A C I O N F . N . , I ' A U C E T T J . , F K O E L I C H E R K . S . , H U M P I i R I i YS J . , L K F K . , M I A S K O W S K I C , P U N T I I . l . O K . , R A N K I N S . 8c

School of Nursing, Box Ohio, University of California.

San Francisco, CA 94i43'(i6IO,

TAYLOR D. (200 1) journal of Advanced Nursing 33(5), 668-676 Advancing the science of symptom management Abstract. Since the public^irion of the original Symptom Management Model (Larson et al. 1994), faculty and students at the University of Calitornia. San Francisco (UCSF) School of Nursing Centre tor System Management have tested this model in research studies and expanded rhe model through collegia! discussions and seminars. 2001 Bkckwcll Science Ltd
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Nursing theory and concept development or analysis

Sympt< >in management

Aim. In this paper, we describe the evidence-based revised conceptual model, rhe three dimension!^ of the model, and the areas where hirther research is needed. Background/Rationale. Tlie experience of symptoms, minor to severe, prompts million.s of patients to visit their healthcare providers each year. Symptoms not only create distress, bnr also disrupt social functioning. The management of symptoms and their resulting outcomes often become the responsibility of the patient and his or her family members. Healthcare providers have difficulty developing symptom manaj^ement strategics that can be applied across acute and home-care setrings because few models of symptom managctnent have been tested empirically. To date, the majority of research on syEiiptoms was directed toward studying a single symptom, such as pain or fatigue, or toward evaluating associated symptoms, such as depression and sleep disturbance. While this approach has advanced our understanding of some symptoms, we offer a generic symptom management model to provide direction ftjr selecting clinical interventions, informing research, and bridging an array of symptoms associated with a variety of diseases and conditions. Finally, a broadly-based symptom management model allows rhc integration of science from other fields. Keywords: concepts/coustrucrs related to health, symptom uianagemeiit model, symptom management theory

Overview of the symptom management model Overall model

A symptom is defined as a subjective experience reflecting changes in the biopsychosocial functioning., sensations, or cognition of an individual. In contrast, a sign is defined as any abnormality indicative of disease that is detectable by rhe individual or by others (Harver & Mahler 1990). In the University of California, San Francisco [UCSF) model, signs are incorporated when they are needed to assess disease status and to evahiate and verify the effectiveness of management straregies. Both signs and symptoms are important cues that bring problems to the attention of patients and clinicians. Ideally, patients should be taught the importance of signs., which may have little relevance to the layperson until their meaning and relationship to an underlying cause is understood. The absence of signs or symptoms, however, does not necessarily imply the optimal health and well-being of an individual. The UCSF School of Nursing Symptom Management Model is based on the premize that effective management of any given symptom or group of symptoms demands rhar all three dimensions be considered. The irUerrclatedness of these three dimensions of symprom management is rarely taken into account in research, even though its importance is acknowledged (Lenz et al. 1997). Later in this article, findings from recent research will be used to demonstrate

the incerrelatedness of the symptom experience, symptom management straregies and outcomes.

Relationships within the model The dimensions of the symptom management model have conceprualized relarionships to one auorher depicted in borh the original and revised model (see Figure I) shown wirh bidirecrional arrows. The relationships among these dimensions were revised based on research and experiential findings and on further conceptualizations by the faculty and graduate students of rhe UCSF Symptom Management Center.

Model assumptions The symptom management nKjdel is based on six assumptions: That the gold standard for rhe study of symproms is hascd on the perception of the individual experiencing the symptom and his/her self-report. Thar rhe symptom does not have to be experienced by ari individual to apply rhis model of symprom managemenr. The individual may be at risk for rhe development of the symptom because of the influence (impact) of a context variable such as a work hazard. Intervention strategies may be initiated before an individual experiences the symptom. That nonverbal patients (infants, poststroke aphasic persons] may experience symptoms and the interpretation by rhe
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Person
Demographic, psychological, sociological, physiological, developmental

Symptom experience
Perception

of symptoms

Evaluation of symptoms

Components of \ ' ^symptom management^ strategies . I

\
Who? (Delivers) *

Response to symptoms

VJhaf \ When? \ Where? How much? S

Functional status

Environment
^ Physical Social \ Cultural S

Emotional

Self-care

Ad h e re n ce

status
Mortality

Symptom status

/Health &illness;
Risk factors .' Health status ,* Disease & injury^.* /

Morbidity & co-morbidity

Figure 1 Revised SyraptDm Conceptual Model.

parent or caregiver is assumed to be accurate for purposes of intervetiing. That all troublesome symptoms need to be managed. That management strategy may be targeted at the individual, a group, a family, or the work environment. That symptom management is a dynamic process; that is, it is modified by individual outcomes and the influences of the nursing domains of person, health/illness, or environment.

The domains of nursing science as they relate to the model In the revised model the recognized domains of nursing science, person, health/illness and environment are contextual variables influencing all three dimensions of the model: symptom experience, management strategies and outcomes. Person domain Person variables - demographic, psychological, sociological and physiological - are intrinsic to the way an individual views and responds to the symptom experience. Developmental variables include the level of development or maturation of an individual. When the model is used, person variables may be expanded or contracted depending on the symptom(s) and tbe population of interest. The impact of developmental stage in the person domain is illustrated in a study of midlife women where menopausal symptoms affect quality of sleep as an outcome (Lee & Taylor 1996). Premature infants may have under-treated pain 670

due in part to the clinician's reliance on behavioural rather than physiological cues (Franck & Miaskowski 19y8). Gender affects cardiovascular outcomes with women having greater morbidity and mortality after coronary bypass graft surgery (Rankin 1990) and after myocardial infarction (Rankin etal. 1997}. Gender also appears to affect the physiologic response to analgesic medications (Gear et al. 1996}. Chemically dependent patients treated in emergency departments get tnore analgesics while elderly patients often receive lower amounts of analgesics for pain management (Puntillo f/fl/. 1999). Health and illness domain The domain of health and illness is comprised of variables unique to the health or illness state of an individual and includes risk factors, injuries, or disabilities. Our studies showed that variables included in the health and illness domain have direct and indirect effects on symptom experience, management and outcomes. For example, different types of pultnonary disease produce quantitatively and qualitatively different experiences of dyspnea (Janson &c Carrieri 1986). People with Type I and Type II diabetes mellitus differ in types and presentation of symptoms and in outcomes of the disease even with similar management strategies (Hunt etal. 1998, Rankin 1998). Stage of progression of diabetes-related peripheral perfusion problems determines the selection of preventive or remedial therapies (Karani 1996). Women who develop nonpainful breast abnormalities (signs and/or symptoms) are much less likely to seek early treatment

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Symptom management In summary, in the revised model, the three domains of nursing science (person, healtb/illness and environment) affect and modify all three dimensions of the UCSF symptom management model. This revision is an expansion of the theory base underlying the model and is based on original research.

than those with painKil lircnst abnormalities with rcsiiltinj; poor outcomes (Facione & Ciianc;irlo iy9S). The type and extent ot cancer dictates rhe choice t)t' treatment and this in ttirn affects the risk factors of treattnent-related morbidity. For example, persons who are being treated for head and neck cancer have different risks for developing painful oral miicositis based on the type of therapy received (Shiba 1997, Beck 1999, Dodd etal. 1999]. individuals may be at risk for symptoms related to such environmental factors as occupational hazards, or from tbe side-effects of treatment for a disease or condition, or as a result of symptom sequelae that are associated with tbe persistent primary symptoms of disease. These symptoms can be anticipated, prevented, or diminished tbrougb intervention. For example, many ergonomic hazards can be identified., measured and corrected to prevent musculoskeletal symptoms (Faucett 1997, Faucett &C Werner 1998). in addition, the mode! aiiows for the assessment of factors that may intUience the perception, evaluation and response of an individual at risk for potential symptoms. Environment dimiain The environment refers to the aggregate of conditions or tbe context within wbich a symptom occurs; that is, it includes physical, social and cultural variables. The physical environment may encompass home, work and hospital. The social environment includes one's social support network and interpersonal relationships. Ctilttiral aspects of the environment are those beliefs, values and practices that are unique to one's identified ethnic, racial, or religious grt)iip. In our studies, the setting where symptoms are experienced affected both selection of management strategies and outcomes. For example, being boused in a temporary siielter has a marked impact on tbe person's perception of fatigue, sleep and outcomes (Flumphreys etal. 1999). A patient who is receiving outpatient cancer therapy and who develops painful oral mucositis will receive self-care suggestions to manage this condition at home (Beck 1999, Dodd etal. 1999). The biomechanical, organizational and psychosocial aspects of the work environment offer potential intervention targets for tbe control of musculoskeletal pain and related disability (Faucett 1997, Faucett & Werner 1998). People with a ciiief complaint of insomnia may have very different sleep patterns when studied in a sleep laboratory compared with their sleep at home (Lee et al. 2000). Patients who are taught asthma self-management in individual sessions show improved adherence to therapy as compared with those taught in groups and medication skills improved more in groups than in individual sessions (Wilson et at. 199.^, Janson etal. 1999).

Symptom experience
'Lhe symptom experience includes an individual's perception of a symptom, evaluation of the meaning of a symptom and response to a symptom. Perception of symptoms refers to whether an indi\idual notices a change from the way he or sbe usually feels or behaves. People evaluate tbeir symptoms by making judgements ahout the severity, cause, treatability and the effect of symptoms on their lives. Responses to symptoms include physiological, psychological, sociocultural and behavioural components. LInderstanding tbe interaction of these components of the symptom experience is essential \i symptoms are to be effectively managed. There are bi-directional relationships among the components of the symptom experience dimension. For example, botb evaluation and response can modify perception (Facione & Dodd 1995, Jayne 1996). If an individual believes that tbe symptom has ominous significance, the perception of intensity may well be heightened. In the revised model (Figure I), these processes are conceived to be iterative and may occur simultaneously.

Perception of symptoms: new insights Recent advances in brain imaging (i.e. positron emission tomography |PFT| and functional magnetic resonance imaging |fMRI|) make it possible to 'image' pain sensations (Duncan et ai 1998, Paulson etal. 1998). However, the technology required to perform these diagnostic pain tests is cumbersome and not easily adaptable to inpatient or outpatient assessments. For a valid self-report t)f symptoms, the person reporting mtist be responding to a perception of a symptom. Rating scales, often used for quantification or characterization of symptoms, are inherently limited by boundaries imposed by the instrument, its measurement characteristics and tbe capacity of the person to report. As these processes are internal neurophysiological functions, we must ask, "C^an the internal dimensions of the sytnptom experience (perception, evaluation and responses) be modified or influenced by the condition of the person and/or the treatments?" Such a modification could be negative as weii as positive. For example, critically ill patients on mechanical ventilation who
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M. receive paralytic agents to control ventilation are no longer capable of demonstrating behavioural responses to pain, yet they can still perceive the sensation. The source of the report of symptom perception becomes more complex when viewed in the context of multiple pcrceivers. For example, wben a child with asthma begins wheezing and coughing, the child undoubtedly perceives respiratory distress but, in addition, the parent perceives the child in distress and attaches meaning to this perception. The healthcare provider perceives the responses of child and parent, interprets them and makes a management decision. When the perceptions are congruent, then the management approaches wiil not conflict, but if they are not, then problems arise in devising an appropriate management solution (Koenig 1999). In some instances., technology provides useful means to describe a symptom experience when perception is subconscious. For example, in a study oi the symptoms of human immunodeficiency virus-infected (HIV) children, Franck and colleagues (Franck etal. ]999] used wrist actigraphy to quantitatively measure sleep. In addition to self-reports on sleep quality by both the child and parents. Children and parents both reported generalized 'problems sleeping', with few night awakenings, but actigraphic monitoring revealed frequent night waking that resulted in overall poor sleep efficiency. Culture and developmental stage will intluence an individual's symptom perception. Taylor, Lee and Berg have examined the petimeusttual and perimenopausal symptom experiences of young and midlife women across multiple cultures (Taylor &c Bledsoe 1986, Taylor Ik Woods 1991, Rittenhouse & Lee 1993, Taylor 1995, Lee & Taylor 1996, Berg & Taylor 1999, Berg 1999). What is evident from their studies are the important differences in perception, evaluation and responses to symptoms, reflecting cultural influences on explanatory models of menstruation, childbearing and midlife. Both sexual assault history and a pattern of severe, multiple perimenstrual symptoms have a profound impact on women. Because little is known about the relationship between them, Ciolding and Taylor (1996) evaluated the association of sexual assault history and circumstances with the ptevalence, onset, type, severity and course of perimenstrual symptom experience, ln two national samples, women with a history of sexual assault had more than a twofold increase in risk for premenstrual disturbance when demographic characteristics were controlled. Finally, an 'experienced' individual, i.e. one with a longterm history of a specific symptom, often learns to catalogue various, discrete and subtle sensations associated with the symptom. His or her description of the symptom's quality can be expected to be fuller and richer than tliat of the same symptom experienced by a 'naive' Individual (Lenz et al. 1997).

Response to symptoms As indicated earlier, response to a symptom includes physiologic, psychological, sociocultural and behavioural components. One or more of any of these responses may be seen with a single symptom. Physiologic responses to symptoms can include alterations in functioning that may accentuate the symptom. For example, the patient who experiences dyspnea and who evaluates it as a thteat, may respond by increasing minute ventilation (respiratory rate or tidal volume). The resulting inctease in afferent neural traffic to the central nervous system results in increased perception of dyspnea, thus worsening the overall perception of threat. Physiologic responses to the symptom may, in tutu, activate other negative physiological responses.

Remaining issues and litnitations: symptom experience As mentioned earlier, self-report of symptoms is considered the gold standard for measuring symptoms. However, the provision of quality healthcare may be jeopardized when the evaluation of a patient's symptom by the provider or a family member does not match the perception and interpretation of that symptom by the patient (Fagerhaugh &c Strauss 1977). For example, healthcare professionals in emergency departments often make inferences about the degree of a person's pain based on the patient's presenting problem rather than on a rating score provided by the patient on a O-IO numeric rating scale. Observable problems such as a dislocated shoulder may be given more weight than nonobservable problems such as a migraine headache. Triage nurses in an

Evaluation of symptotns Evaluation of symptoms entails a complex set of factors that characterize the symptom experience, including its intensity, location, temporal nature, frequency and affective impact. It aiso includes evaluation ot the threat posed by a symptom, such as whether or not it is dangerous or has a disabling effect. Recently, in another study of the reasons why patients with acute asthma delay treatment., 86-5% reported that seeking treatment would disrupt the social situation or expectations of family members (janson 6c Becker 1998).
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Symptom management diversity instead of individual personal factors such as ethnicity would be important components of the model. The model should more specifically guide the assessment of those characteristics and allow for specification of community intervention strategies.

emergency deparrmcnt rated presenring patients' pain significanrly lower than the patients rated their own pain (Puntillo etal. 1999). A second issue related to the symptom experience is the difficulty in separatitig the patients' perceptions of a symptom from rhe patients' evaluations of it. There are actually very little data to distinguish between the patients' perceptions and evaluations of most symptoms. The ahility to make this distinction becomes important wben attempting to employ an intervention to change a .symptom experience. One v^ay of viewing the difference between perception and evaluation is that evaluation is a 'higher order' phenomenon: a person can perceive pain simply by recognizing the sensations, whereas evaluation involves a higher cognitive process of attaching meaning to the symptom. Concept confusion occurs when the symptom or outcome under study or modification is confused with or clouded by a closely related but different concept/symptom. For example, in observing critically ill nonverbal patients, the concept of pain may be confused hy the presentation of anxiety or agitation, because the behavioural responses are similar. These arc largely measurement issues. The instruments chosen to assess symptoms and outcomes must be carefully tested to avoid validity problems. The way in which family members are involved in the symptom experience can also create concept confusion because others are acting as intermediaries, hi the case of parent and child, it is the parents who evaluate the child's response to a symptom and determine the intervention needed. The symptom experience may change over time and detection of the symptom may become more complex. Stevens etal. (1999)., have shown that the various painful procedures experienced hy premature infants prior to undergoing a heelstick alter their responses. The behavioural expression of the response., which is most commonly assessed by nurses, does not change or may even diminish when the infant is exposed to repeated pain even when the infant's physiological responses may increase (Johnston &i Stevens 1996). In other words, wben monitored over a period of time, nurses may underestimate tiie intensity of the symptom experienced by the infant if behavioural cues are used exclusively. dearly, the model needs further elaboration to allow for community or group needs assessments, or health-risk profiling. Such assessments would include characterizing the risk of symptom development; evaluating the values and social processes of at-risk groups; analysing organizational factors, such as the resources available for effecting change; and emphasizing prevention as well as possible constraints to intervention. Summary group characteristics such as cultural
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Symptom management strategies

The goal of symptom management is to avert or delay a negative outcome through biomedical, professional and selfcare strategies. Management begins with assessment of the symptom experience from the individual's perspective. Assessment is followed by identifying the focus for intervention strategies. The intervention strategies may be targeted at one or more components of the individual's symptom experience to achieve one or more desired outcomes. Symptom management is a dynamic process, often requiring changes in strategies over time or in response to acceptance or lack of acceptance of the strategies devised. The revised model (Figure 1), includes the specifications of what (the nature of the strategy), when, where, why, how much (intervention dose), to whom (recipient of intervention) and how (delivered). Researchers and clinicians consider these questions as they design, develop and prescribe symptom management strategies. The specifications should greatly aid in replications of intervention studies. The nature of the intervention depends on the state of the science for the particular symptom. For example, the use of around-the-clock administration of opioid analgesics is a recommended approach for the management of metastatic bone pain. However, little information is available on how to assist oncology patients to adhere with the therapeutic regimen. 'I herefore, a more generic intervention that utilizes an approach of providing patients with education, self-care skills and support is currently being tested (Miaskowski et al. 1995-1999). In contrast, mucositis, a commonly experienced side-effect of chemotherapy, is a collection of signs and symptoms for which more is known. Researchers established that patients who regularly perform systematic oral hygiene during chemotherapy can successfully lower their incidence of mucositis. With this knowledge, researchers can advance the science in the Held by testing the effectiveness and added value of different mouthwash preparations for the prevention of mucositis (Dodd et al. 1996). Researcbcrs conducting longitudinal studies are often confronted with the problem of gauging just how much 'attention' to provide the placebo group in order to minimize attrition, while ensuring that the attention not cause an effect. For example, in an ongoing clinical trial testing an individualized home-based exercise intervention, individuals who are
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randomized to the conrrol group receive moniroring only with weekly phone calls of the same length as the intervention group, but no exercise prescription (Dodd et al. 1999-2004). In the evolution of the research on symptom managemenr srraregies, developers ot the model have moved from rargering only the individual ('to whom' in rhe model) ro inckiding family members and 'experienced' former patients as recipients of the intervention. Miaskowski et at. (199.^-1999) targeted cancer patients and the family members involved in rheir care wirh a self-care intervenrion ro relieve the patient's pain. From observations in clinical practice, family members, while often very helpfu! to rhe patient in managing symptoms, sometimes are nor. Of concern are the strong beliefs held by cancer patients and their families about the best way to relieve pain, one issue being the use of opioid analgesics. In this ongoingstudy,investigatorswill compare pain relief in patients with and without family members participating in their care. Others (Robinson etal. 1998, Whittemore etal. 2000) have used 'experienced' former parienrs ro deliver the inrtTvenrion to an affected individual. In one such study. Rankin is testing an intervention in a trial using three groups, one comprised of elderly (>65 years) people who have had a myocardial infarction (MI), have completed phase III cardiac rehabilitation and have been educated as 'peer advisors" to problem solve and preside empathetic listening and social support to others. The other Two groups are a control group and a second intervention group comprised of subjects who receive a self-efficacy coaching intervention from cardiovascular advanced practice nnrses. Problem solving and social support is provided to the unpartnered elder who has had a MI and is then released into rbe communiry witb few resources. Peer advisors have successfully intervened in situations involving congestive heart failure, managemenr of physical energy demands, recurrent angina, depression and have helped with obtaining visiring nursing services. Sharing common experiences of recovery from MI enables rhe peer advisors to develop relationships in which they assist study participants by giving advice, alleviating fears and encouraging study participants to advocate for themselves within the healthcare system.

treatment choices? Who determines the dose (intensity, duration, frequency) of the strategy? The recipient can be au individual, the family, or the community. Occupational and environmental health nursing, for example, focuses care towards groups of workers or comniuniry members rather than individuals. In the example cited earlier, interventions involving rhe prevention of occupational musculoskeletal pain and injury arc targered at groups of workers facing similar job hazards. Similarly, public health strategies focused at the group level will have the mosr impacr when whole neighbourhoods or other populations may be at risk from exposure ro environmental roxins. Adherence (i.e. whether the intended recipient of the srratcgy acrually receives or uses rhe srraregy prescribed) and inrervenrion integrity presenr a porentially more challenging issue. Intervention strategics that are too demanding are associated with increased risk for nonadherence (see Fignre 1, broken arrow between the symptom management and outcomes dimensions]. If the intervention is applied inconsistently or not at all, intervenrion integrity and the internal validiry of rhe overall resr of the intervention are affected. Adherence is a critical factor that affects the outcome of the intervention and is under the control of the patient or family member who is the target of the intervention (Turk & Rudy 1991, Sidani 6c Braden 1997). However, characteristics of rhe healrh care provider and health care system can also influence adherence.

Outcomes
Outcomes emcrj^t- from symptom management strategies as well as from the symprom experience. In rhe revised mode! the outcomes dimension focuses on eighr factors. A new ourcome - cosr - includes financial starus and health services utilization dimensions of the original model as well as receipt of workers compensation. The costs of poorly managed symptoms include missed professional opportunities for advancemenr ar work., or comparable 'costs' wirh the individual's personal life (Stonimel et al. 1993, Given ct at. 1994). In the revised model there arc no arrows indicating directionality between the multidimensional indicators and symptom status. Rather, all outcomes may be related ro each other as well as to symptom starus. The duration of symptom evaluarion depends upon its persistence, need for continued iurervenrion and response ro treatment. When a symprom is successfully rreaced and completely resolved, the model is no longer relevant. But, if continued intervention is necessary to control recurring symptoms, then the mode! continues to be applicable and direct management and measurement of outcomes continues.

Remaining issues and limitations: symptom management strategies A number of quesrions about symprom managemenr remain to be explored. For example, how is rhe issue of timeliness of patient-initiated strategies dealt with? How are appropriate and inappropriate strategies handled? Are the managemenr strategies effective or ineffective? Are rhey health-damaging? What if rhere is a conflict between patient and provider about
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Remainitig issues and limitations: outcomes A key question that has not yet been resolved is who evaluates symptom outcomes? Is it always the patient? For occupational and environmental health groups self care may be considered an outcome, whereas others viewed self-care as the ability to perform symptom management strategies. A question ftir testing is: can the model embrace both of these views and be congruent?

Acknowledgements The authors wish to thank the remaining members of the C^enter for Symptom Management Faculty Clroup and the pre and postdoctoral fellows, especially Amy Tsang, for their discussions and insights coticerning the model. This study was funded by United States National Institutes of Health, NIH, NINR: P30 NR03927.

References The model as a whole

Remaining issues and limitations: the model as a whole A number of questions continue to be raised by UCSF researchers involved in developing and refining this model. For example, we are interested in studying the presentation of several concurrent symptoms or coexistent symptoms that may occur as a 'symptom cluster/ More specifically, one symptom may receive the first intervention or two symptoms may be addressed simultaneously. The dynamic nature of symptom expression means that the primary symptom within a cluster may be subject to rapid change. In this case., the position of the symptom in the model might well move from foreground (priority) to background as other symptoms become more or less distressing or more or less severe. In addition., the present model does not distinguish between acute and chronic symptoms. The ramifications of acute vs. chrome symptom management need to be explored if the model is to be comprehensive and optimally useful.
Beck S. (i 999) Mucositis. In Cancer Symptom Management, 2nd edn (Yarbri* C.H., Kroggc M.H. & (iO{)dman M., eds), Jones and Bartlett Publishers, Sudbury Mass, pp. .MH-^^H, lierg j . (1999) The pcrimfnopausal transition of Filipino Amfrican midliff women: biopsychosocial ^ind cultural dimensions. Nursing Research 48, 71-77. Berg j . & Taylor D. (1999) The symptom experience of Filipino American midliff women. Menopause 6, 105-1 14. Dodd M., Lanson P., Dibble S., Miaskowski C , Greenspan D., Macl'linit L., Hauck W., Paul S., Ignoffo R. & Shiba C. (1996) Randomized clinical trial of chlorhexidine versus placebo for prevention of oral mucosicis in patients receiving chemotherapy. Oncology Nursing Forum 23, 921-927. Dodd .M.J., Miaskowski C , Slilba C, Dibble S., Greenspan D., Mad'hiiil L., Paul S. & Larson P. (1999) Risk factors for chemotherapy-induced oral mucositis: dental appliances, oral hygiene, previous oral lesions and history of smoking, ('ancer Investigations 17, 278-284. DndJ M.J., Piiinter P., Miaskowski M., Facione N., Tripathy D., Rosenbaum E. & Paul S. (1999-2004) Research study: exercise: an intervention for fatigue in cancer patients. Funded by NIH. National Cancer Institute ROl, CAS3.^I6. Dunciin G.H., Keepers R.C., Marchand S., Viilenuuc J.-G., Gybels j.M. ik Bushncll M.C. (199H) Stimulation of human dialamus for pain relief: possible modulatory circuits revealed by positron emission tomography, journal of Neurophysiology 80, 3326-3330. Fjcione N.C. & Dodd M.j. (1995) Women's narrative.'^ of helpseeking for breast cancer. Cancer Practice 3, 2 19-225. Facionc N.C. & Giancarlo C.A.F. (1998) Narratives of breast symptom discovery and cancer diagnosis: psychologic risk for advanced cancer at diagnosi.s. Cancer Nursing 21, 430-440. Fagerhaugh S. & Strauss A. (1977) Politics of Pain Management: StaffPatient Interaction. Addison-Wcsley Publishing C:o., Menio Park. Faucett J. (1997) The ergonomics of women's work. In Women's Health: Complexities and Differences (Ruzek S., Olesen V. & Clark A. eds). The Ohio State University Press, Ohio, pp. 154-1 72. Faucett J. He Werner R. (1998) Non-biomechanical factors potentially affecting musculoskclctal disorders. Report prepared for the National Research Council, Washington, DC. Franck L.S. He Miaskowski C. (1998) Measures of neonatal responses to painful stimuli, journal of Pain & Symptom Management 14, 343-378. Franck L., Johnson L., Lee K., Hepner C , Lambcrr L., Passeii M., Manio E., Dorenbaum A. be Warn D. (I 999) Sleep disturbances in children with human immunodeficiency virus infection. Pediatrics On-Lim- 104, e62.

Conclusions
The symptom management model continues to evolve as a framework for understanding symptoms, designing and testing management strategies and for evaluating outcomes. The symptom management model is offered as a conceptualization to guide selection of management strategies in contrast to a recently published theory of unpleasant symptoms that focuses more on explaining the symptom experience and how it affects function (Lenz etal. 1997). The model is highly generalizable. The UCSF faculty members are committed to developing symptom management knowledge and middle range theories are useful for this purpose. In this endeavor, dialogue with nursing colleagues in graduate schools, clinical practice, research and education around the globe is actively encouraged.

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Gear R.W., Miaskowski C , Gorcluiin N.C., Paul S.M., Heller P.H. & Lcviue j . D . (1996) Kappa-opioids produce significantly greater analgesics in women than in men. Nature Medicine 2, 1248-1250. Given B.A., Given C.W. &: Stomiiu'l M. (1994) Family .ind (.mtol'-pockct costs for women with breast cancer. Cancer Practice 2, 187-19,^. Golding J.M. & Taylor D. (1996) Sexual assault and premenstrual distress in two general popiiiation samples. Journal of Women's Health 5, 14.1-152. Harver A. & Maliler D.A. (1990] The symptom ot dyspnea. In Dyspnea (Maliler D.A. ed.), Futura, Mount Kisco, NY, pp. 1-53. Humphreys J . C , Lee K., Neylan T.C. & Marmar C. (1999) Sleep patterns of sheltered hattered women. Image 2, 139-143. Hunt L.M., Arar N.H. &: Larne A.C. (1998) Contrasting patient and practitioner perspectives in type 2 diabetes management. Western Journal of Hursing Research 20, 656-676. Janson S. & Becker G. (1998) Reasons for delay in seeking a treatment for acute asthma: the patient's perspective, journal of Asthma 35, 4 2 7 ^ 3 5 , janson S. bc Carrieri V.K. (19S6I The sensations of pulmonary dyspnea. Nursing Research 35, 1.54-159. Janson S., Govington J., Fahy J., Gold W. & Boushey H.A. (1999) Glinical and bitilogical outcomes of individual asthma education. American Journal of Respirato)y and Critical Care Medicine 159, A24]. Jayne R.L. (1996) Paclent education as a cool for normalization and sflf-regulation. In Patient Education: Issues, Principles and Practices, -Ird edn (Rankin S.H. & Stallings K..D. eds), JB Lippincott, Philadelphia, pp. 41-59. Johnston G.G. & Stevens B. (1996) Experience in a neonatal intensive care unit affects pain response. Pediatrics 98, 925-930. Karam J.H. (1996) Diahetes mellitus and liypoglycemia. In Current Medical Diagfiosis and Treatment (Tierney L.M., McPhee S.J,, Papadakis M.A. eds), Appleton and Lange, Stamford, CT, pp. 1030-1068. Koenig K. (1999) Controlling crises in Latino and African American infants and toddlers with severe persistent asthma: an interpretive study of family management practices. Dissertation study. School of Nursing, University of California, San Francisco. Larson PJ., Carrieri-Kohlman V., DodJ M.J., Douglas M., Faucett J., Froelicher F.., Gortner S., Hallihurton P., janson S., Lte K.A., Miaskowski C , Savedra M., Stotts N., Taylor D. 8c Underwood P. (1994) A model for symptom management. Image Journal of Nursing Scholarship 26, 272-276. Lee K.A. & Taylor D.L. (1996) Is there a generic midlife woman? The healrh and symptom experience of employed midlife women. Menopause: The journal of the North American Menopause Society X 154-164. Lee K.A., Zaffke M.E. & McEnany G. (2000) Parity and sleep patterns during and after pregnancy. Ohstetrics and Cynecology 95, 14-lS. Lenz E.R., Pugh L.C., Milligan R.A., Gift A. i<c Suppc F. (1997) The middle-range theory of unpleasant symptoms: an update. Adi'ances in Nursing Science 19, 14-27. Miaskowski C , Dodd M., Koo P., West C , Tripathy D. & Paul S. (1995-1999) Research study: self-care intervention to ci>ntrol cancer pain. Funded hy NIH, National Ciancer Institute, CA64734.

Paulson P.E., Minoshmia S., Morrow T.j. & Casey K.L. (1998) Gender differences in pain perception and patterns of cerebral activation diiting noxious heat stimulation in humans. Pain 76, 223-229. Puntillo K., Neighbor M. & O'Neil N. (1999) Emergency department nurses' and patients' estimates of patient pain: How close are tbey? Abstract presented at ENA Annual Meeting, Washington, DC. Rankiii S.H. (1990) Differences in recovery from cardiac surgery: a profile of tnale and female patients. Heart and Lung 19, 481-486. Rankin S.H. (1998) Commentary: contrasting patient and practitioner perspectives in type 2 diabetes. Western journal of Nursitig Research 20, 677-67H. Rankiii S.H., Carroll D.L., Arnstein P., Robinson E., Buselli B., Capasso V., Cattle J., Simon M. & Berry D. (1997) Changes in health outcomes after myocardial infarction: the influence of age and gender in unpartnered elders. American Heart Association Abstract #10.59. Circulation Suppl. 96, I-I91. 70th Scientific Sessions, American Heart Association, Orlando. Rittenhouse C. &L Lee K. (1993) Biopsyciiosocial correlates of perceived perimenstrual weight gain. Journal of Wofnen's Health 1. 14.5-148. Robinson F.., Rankin S.H., Arnstein P., Carroll D. & Traynor K. (1998) Meeting the needs of unpartnered elders: a peer training program involving elders and myocardial infarction. Progress in Cardiovascular Nursing 13, l.J-23. Sbiba G. (1997) Oral mucositis in head and neck cancer patients who are receiving radiation therapy. Dissertation study. School of Nursing, University of California, San Francisco. Sidani S. & Braden C.J. (1997) Evaluating Nursing Interventions: A Theory-Driven Approach. Sage Publications, Inc., Thousand Oaks, California, USA. Stevens B.J., Jobnston C , Franck L.S. & Petryshen P. (1999) Tbe efficacy of developmentally sensitive interventions and sucrose for relieving procedural pain in very low birth weight neonates. Nursing Research 48, 35-43. Stommel M., Given C.W. & Given B.A. (1993) The cost of cancer home care in families. Cancer 71, 1867-1 874. Taylor D. (1995) Perimenstrual symptoms and disorders. In Women's Prunary Care: Protocols for Practice (Star W., Lommul L. & Shannon M. eds), American Nurses Association, Washmgton, DC, pp. 141-L57. Taylor D. & Bledsoe L. (1986) Peer support, PMS and stress: a pilot study. In Culture, Society and Menstruation (Olcson V. & Woods N. eds). Hemisphere, Washington, DC, pp. 159-170. Taylor D. & Woods N. (1991) An explanatory model of perimenstrual negative affect. In Menstruation, Health and Illness (Taylor D. & Woods N. eds). Hemisphere, Washington, DC, pp. 103-118. Turk D.C. & Rudy T.E. (1991) Neglected topics in the treatment of chronic pain patients - relapse, noncompliance and adherence enhancement. Pain 44, 5-28. Wbittemore R.Q., Rankin S.H., Callahan C D . , l.fder M.C. & Carroll D.L. (2000) Tbe peer advisor experience providing social support. Qualitative Health Research 10, 260-276. Wilson S.R., Scamagas P., German D.E., Hughes G.W., Lulla S., Coss S., Cbardon L., Starr-Schneidkraut N., Stancavage F.B. &c Arsham G.M. (1993) A controlled trial of two forms of selfmanagement education for adults with astbma. American Journal of Medicine 94, 564-576.

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2001 Blackwell Science Ltd, Journal of Advanced Nursing, 33(5), 668-676