Use of a quality of life instrument to improve assessment of brain tumor patients in an outpatient setting.
Persons with brain tumors experience their disease in a larger way than their symptoms indicate. The impact is felt far beyond the physical signs and symptoms that are observed during routine clinic visits. The nurse in the clinic setting must go beyond the routine assessment of signs and symptoms of brain tumors, such as headache and fatigue, to include assessment of the impact of symptoms within the context of the day-to-day experiences of patients. The nurse can then use this assessment to empower patients and families in ways that will improve day-to-day living.
In outpatient settings, assessment of persons with brain tumors is often focused on symptomatology and changes the patient has experienced since the last visit. Assessment questions such as, "how are you doing?" or "what problems are you having?" often result in vague answers, which do not provide insight into the patient experience. Methods to uncover the day-to-day experiences of patients are needed in order to effectively assist the patient and family in dealing with the sequela of the disease. This article describes the use of a quality of life instrument as a guide for assessment of brain tumor patients in the outpatient setting.
Using a Quality of Life Instrument for Assessment
The use of a quality of life measurement tool is one method by which the nurse may obtain a more comprehensive assessment of the experiences and needs of the patient with a brain tumor. The tool that is selected should be simple, short and easy to understand. It should also be easy to remember, administer and score. The instrument should address the major dimensions of QOL identified in the current literature. These include the physical, social, and psychological dimensions of the illness experience. (1) Finally and most importantly, the tool should prompt the clinician to obtain insight into the patient perspective. Selecting a tool based on these criteria will maximize the quality of the assessment. The Quality of Life Index (QL-Index) is one tool, which meets the above criteria and has been successfully used in an outpatient setting (Fig 1).
The Quality of Life Index is a five-item tool developed by Spitzer and colleagues in 1981. The tool was originally developed to quantify the effectiveness of treatments beyond traditional measures such as morbidity and mortality for populations with cancer and other chronic illnesses. It was validated by 150 physicians in 879 patients. Assessment of internal consistency demonstrated a Chronbach's coefficient x=.775 and the interrater Spearman rank correlation was high and statistically significant (rho = .81, p<001). Although it was originally developed for use by physicians to objectively evaluate quality of life, it can easily be used by any clinician to obtain objective and subjective assessment data.
The tool is organized around five categories related to QOL. These categories include the following:
* activity, including ability to work, or perform housework or volunteer activities
* ability to meet self-care needs such as eating, dressing and driving
* health, which examines overall how the person perceives that he or she is feeling
* social support
* outlook, which focuses on the psychological effects of the illness
To complete the tool the clinician rates the patient from 0-2 in each of the five categories. Each numeric value carries a descriptive statement, which assists the clinician in scoring the patient in that particular category. By adding the scores in each of the categories an overall QOL score may be calculated.
The Quality of Life Index can be most effectively used when specific questions, tailored to elicit information from each category in the index, are asked of the patient. For example, the first area in the tool focuses on the ability of the patient to carry out daily or work activities. Questions or leading statements that assist the clinician in obtaining this information are: "Tell me about your work day or your typical day" or "Tell me what you are able to do around the house or at work." An appropriate question to obtain information on the patient's daily activities might include, "Tell me about your daily activities" or "What things are you doing for yourself each day?" To evaluate the health category, a question such as, "How are you feeling on average?" may be asked. In this category it is also helpful to ask, "How is your level of energy?" or "How have you been feeling most of the time?" Social support can be best evaluated by asking the question, "What kind of support are you receiving from family or friends?" or "tell me about your social activities?" Finally, outlook can be assessed by asking, "Tell me about your mood," or by telling the patients that many patients with brain tumors describe feelings of sadness and periods of feeling "up and down" and asking them if they may be having similar feelings.
Although the tool does not cue the clinician to do so, additional probing will determine how much of a problem the identified issues are for the patient. For example, if the patient identifies that he or she is very fatigued, it is important to determine if this creates a lot of stress or anxiety for the patient. The patient may have previously had a very sedentary lifestyle and therefore fatigue may be less of an issue than for the patient who was previously very active and constantly on the go.
Finally, the use of the Quality of Life Index provides an opportunity for the evaluating clinician to rate their confidence in the quality of their overall assessment. The tools asks, "How confident are you that your scoring is accurate?" A Likert type scale ranging from absolutely confident (1) to not at all confident (6), is provided to answer the question. This feature of the tool cues the clinician to evaluate the completeness and accuracy of the assessment.
Advantages of Using a QOL Instrument
While the Quality of Life Index provides a guide to a more comprehensive and focused nursing assessment, it also has additional functions that may be useful to the clinician caring for persons with brain tumors in the outpatient setting. The tool can be used to calculate a total QOL score that can be recorded each time the patient is seen in the clinic and then compared to previous scores over the trajectory of the patient's illness. Since the instrument provides the opportunity to calculate a total QOL score, it could be an appropriate tool for use in research that requires a quantitative comparison.
The use of a QOL tool for assessment can guide discussions related to overall QOL, decisions regarding treatments and making end-of-life decisions. Within the time constraints of a busy outpatient clinic it is all too easy to miss the opportunity to discuss quality of life issues that are significant to the patient and family. These discussions are critical as patients and families face decisions regarding care and treatment.
In addition to improving assessment and opening discussions regarding quality of life, the information obtained from the assessment and discussions can be used to improve the care provided to patients. For example, many patients are unaware that they are exhibiting signs of depression or anxiety. The tool can help identify those problems and their degree of severity. Medication can then be prescribed or adjusted or appropriate referrals made.
Limitations of the Tool
While the QL-Index has several strengths, including its brevity and multidimensional structure, it also has several limitations. Although the tool is multidimensional in nature is does not address several domains, which may be of importance to patients. These domains include the spiritual domain, physical disabilities and symptoms and financial concerns. Actual experience in using the tool demonstrates that these issues surface as the other domains are addressed. For example, often financial concerns will be mentioned by the patient as the activity/work domain is addressed and patients mention problematic symptoms such as pain as the daily living category is covered. This limitation of the tool can be addressed by remembering to specifically include these areas in additional questioning of the patient or by asking the patient if he or she have other issues that affect their quality of life which have not been previously mentioned.
A second potential limitation of the instrument can be that the tool is designed to be scored by the clinician as opposed to patient-scored. In addition the tool does not cue a the clinician to ask the patient if particular domains are more important than others. If the clinician completes the tool based purely on observation and fails to question the patient in the specific domains, then the value of the information becomes questionable. However, if the clinician uses the tool to discuss the specific domains with the patient, and prioritizes those concerns based on patient input then valuable information can be obtained to plan care.
A third and final limitation of the tool may be that the tool was developed for cancer and chronically ill populations. Persons with brain tumors may have unique problems which may not be addressed by the five domains. For example, seizures are a serious sequela of brain tumors and may result in significant implications for quality of life. Once again this limitation may be minimized by the clinician by asking the patient if he or she has specific issues or concerns and by extrapolating from clinical experience and knowledge the unique problems of persons with brain tumors.
Persons with brain tumors experience their illness in a way that is much larger than the sum of their symptoms. Using a QOL tool to improve assessment can assist the patient, family and clinician in considering all aspects of the experience of having a brain tumor. The tool selected should be easy to use, brief and address the major dimensions of quality of life. The Quality of Life Index is one such tool. The Quality of Life Index assists the clinician in assessing five major categories of a person's illness experience. These include the impact of the brain tumor diagnosis on work-related activities, activities of daily living, general health, support systems and outlook or mood. By using a quality of life instrument such as the Quality of Life Index to improve assessment, clinicians will be able to provide brain tumor patients with focused care to improve their daily lives.
Fig 1. Quality of Life Index Date: -- Quality of Life Index SCORING Age: -- FORM Sex M1 F2 (Ring appropriate letter) Primary Diagnosis: -- Secondary problem or diagnosis, or complication (if appropriate) Scorer's Specialty -- Score each heading 2, 1 or 0 according to your most recent assessment of the patient. During the past week, the patient SCORE * has been working or studying full-time, or nearly so, in a usual occupation, or managing own household, or participating in unpaid or voluntary activities whether retired or not. 2 ACTIVITY * has been working or studying in usual occupation, or managing own household, or participating in unpaid or voluntary activities, but requiring major assistance or a significant reduction in hours worked, or a sheltered situation, or was on sick leave 1 * has not been working or studying in any capacity and not managing own household 0 During the past week, the patient * has been self-reliant in eating, washing, toileting, and dressing, using public transportation or driving own car. 2 DAILY * has been requiring assistance (another person LIVING or special equipment) for daily activities and transport, but performing light tasks 1 * has not been managing personal care nor light tasks and/or not leaving home or institution at al 0 During the past week, the patient * has been appearing to feel well or reporting feeling "great" most of the time 2 HEALTH * has been lacking energy or not feeling entirely "up to par" more than just occasionally 1 * has been feeling very ill or "lousy," seeming weak and washed out most of the time or was unconscious. 0 During the past week * the patient has been having good relationships with others and receiving strong support from at least one family member and/or friend 2 SUPPORT * support received or perceived has been limited from family and friends and/or by the patients condition 1 * support from family and friends occurred infrequently or only when absolutely necessary or patient was unconscious 0 During the past week, the patient * has usually been appearing calm and positive in outlook, accepting and in control of personal OUTLOOK circumstances. 2 * has sometimes been troubled because not fully in control of personal circumstances or has been having periods of anxiety or depression 1 * has been seriously confused or very frightened or consistently anxious and depressed or unconscious 0 QL Index Total How confident are you that your scoring of the preceding dimensions is accurate? (Please ring the appropriate category) Absolutely Confident 1 Very Confident 2 Quite Confident 3 Not Very Confident 4 Very Doubtful 5 Not at all Confident 6
(1.) King C, Haberman M, Berry D: Quality of life and the cancer experience: The state-of-the-knowledge. Oncol Nurs For 1997; 24: 27-41.
(2.) Spitzer WO, Dobson AJ, Hall J: Measuring the quality of life of cancer patients: A concise QL-Index for use by physicians. J Chron Dis 1981; 34: 585-597.
Questions or comments about this article may be directed to: Sherry W. Fox, MS, RN, CNRN, Neuroscience Clinical Nurse Specialist, Virginia Commonwealth University/Medical College of Virginia Hospitals, Box 985961, MCV Station, Richmond, Virginia 23298
|Printer friendly Cite/link Email Feedback|
|Title Annotation:||Clinical Corner|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Oct 1, 1998|
|Previous Article:||Outcomes research and the neuroscience nurse: what's in it for clinical practice?|
|Next Article:||Chart documentation: far reaching concerns.|