Symptom Assessment in Palliative Medicine - Semantic Scholar

AM J HOSP PALLIAT CARE OnlineFirst, published on July 31, 2009 as doi:10.1177/1049909109339619

Symptom Assessment in Palliative Medicine: Complexities and Challenges

American Journal of Hospice & Palliative Medicine1 Volume 000 Number 00 Month 2009 1-9 # 2009 The Author(s) 10.1177/1049909109339619 http://ajhpm.sagepub.com

Jordanka Kirkova, MD, Declan Walsh, MSc, FRCP, Mitchell Russel, MD, Katherine Hauser, MD, and Wael Lasheen, MD Symptoms are important patient-reported outcomes (PRO), which help to evaluate the impact of diseases and treatments and assess quality of care. Thorough symptom assessment is a challenge, as patients in palliative settings are often polysymptomatic and easily fatigued. There is no consensus about standardization of symptom assessment in palliative medicine. The available research provides some methodological guidance, but the psychometric properties of structured

multisymptom assessments are largely understudied. New approaches may improve the efficacy of clinical assessment and create instruments with greater clinical utility. In this article, we discuss current methodological concepts of symptom assessment in clinical practice, specifically with reference to symptom questionnaires appropriate for palliative medicine.

Introduction

of different body systems.4 Clinical assessments by subspecialists vary in detail with greater emphasis and comprehensiveness expected in those systems related to their specialty area of interest. The extent to which such assessments address the total symptom burden may therefore be limited. Nursing records, completed on patient admission to a palliative medicine department, captured pain and functional status well, but less so other common or important symptoms.5 In outpatients, concordance between medical records and patient self-report of chronic conditions varied by disease, with the greatest discordance for arthritis and low back pain.6 These studies suggest that the traditional clinical interview should not be considered the universal gold standard for symptom assessment. Validated multisymptom instruments should probably supplement the clinical interview and review of systems, although not replace it. A content comparison of different symptom and quality-of-life (QoL) instruments versus medical records in palliative cancer patients revealed that only the EORTC QLQ-C30 included the 12 most commonly recorded symptoms.7 Palliative medicine patients report an average of 11 symptoms, but many symptom assessment instruments include less than 10.8 Symptom

Careful assessment is the first step to successful symptom management. Palliative medicine is a new subspecialty and, consequently, has adopted assessment methods from other related areas, for example, cancer, degenerative neurological diseases, and chronic organ failure. Unlike more cure-oriented specialties in palliative medicine, a major focus of clinical activity is symptom assessment and control. Symptoms are an important patient-reported outcome (PRO) to evaluate the impact of both disease and therapy on quality of care.1 Thorough assessment is a challenge, as this patient population is often polysymptomatic and easily fatigued.2 Many, for example, have delirium or cognitive impairment, significant barriers to adequate assessment.3 Published guidelines exist for structured clinical interviews and include comprehensive assessments From the Harry R. Horvitz Center for Palliative Medicine, the Cleveland Clinic Taussig Cancer Center, Cleveland, Ohio (JK, DW, MR, KH, WL); and The Harry R. Horvitz Chair in Palliative Medicine, Cleveland, Ohio (DW). Address correspondence to: Declan Walsh, Cleveland Clinic, 9500 Euclid Ave, M76, Cleveland, OH 44195; e-mail: [email protected].

Keywords:

symptom; analysis; neoplasm; palliative care

1

2 American Journal of Hospice & Palliative Medicine1 / Vol. 000, No. 00, Month 2009

Area of interest Content dimensions, time frame

Patient Content, dimensions, scaling method of assessment, time frame

Goal — Clinical practice or research Content, dimensions, scaling method of assessment, time frame

Figure. 1.

Domains in questionnaire development.

instruments also vary in the time frames, types of scales (categorical, numerical), and number of dimensions (severity, frequency, distress) evaluated. Only in psychiatry have symptom instruments been validated against accepted standards of clinical assessment.9 Recommendations for comprehensive clinical assessment of individual symptoms exist8,10-12 but are inadequate for structured multisymptom assessments. New approaches may improve the efficacy of clinical assessment and create assessment instruments with greater clinical utility. In this article, we will discuss methods of symptom assessment in clinical practice, specifically in reference to symptom questionnaires for use in palliative medicine.

Instruments Overview Various instruments may help guide symptom assessment in clinical research. Three main domains drive instrument development: 1. The patient population (Figure 1). 2. The area of interest. 3. Whether they are used in translational research or are directed at specific clinical problems.

The goals of care in palliative medicine are frequently influenced by the consequences of advanced disease, and some questionnaires or assessment methods adopted from the fields of general medicine or medical oncology may be inappropriate (Table 1). 2

Instruments designed for, or applied to, the field of palliative medicine are compared in Table 2. Multisymptom instruments and questionnaires, which address issues other than just symptoms (eg, psychosocial and QoL issues) are predominantly designed and used for clinical research. To implement these (with acceptable questionnaire length and patient burden), symptoms and other PROs are often limited to those thought most common or believed most distressing to patients.13,14 Some dedicated symptom instruments may also serve as proxy QoL measures, but this is controversial.15,16 Symptoms are also included in dedicated QoL questionnaires, because they may cause distress and, therefore, are thought likely to affect QoL. Some people, despite a high symptom burden, still rate their overall QoL as high, perhaps either from calibration shift or due to changes in life priorities and meaning.17 The same response shift might also apply to physical or psychological symptoms (for example fatigue18), but this is inadequately studied. Properly constructed symptom assessment instruments with good psychometric properties are needed, which should help us understand symptom dynamics and provide more reliable PROs that can improve assessment and treatment.

Psychometrics and Practicality Instrument content and utility. The psychometric properties of instruments may conflict with their practicality in everyday clinical practice. Symptoms, sought in an unstructured manner, are less likely (than perhaps more objective signs of a disease) to be captured in a busy clinical setting. Symptoms are often not volunteered and may be missed even during what appear to be comprehensive clinical histories.19 Standardized questionnaires, although still restrictive, help identify common symptoms in those who are polysymptomatic. Validated symptom assessment instruments in advanced cancer have often favored brevity over comprehensiveness.20,21 Brief questionnaires may exclude several common and/or important symptoms. Comprehensive instruments are therefore needed to understand total symptom burden but may impose a significant time burden on patient and observer particularly in repeated assessments. The paradox is that sicker patients have more symptoms, and this requires more comprehensive inquiry of frail individuals to determine their true symptom burden.

Items

Symptom Dimensions Scales

Assessment Method

þ þ þ þ

þ þ –/þ –

þ þ þ –

þ þ þ þ

þ þ –/þ – – þ þ þ

–/þ –/þ þ þ

þ þ/– – –

þ þ/– – –

– þ/– þ þ/–

þ þ/– – –

þ þ/– – –

þ þ þ þ

– – þ/– þ/–

Multiple Clearly Positive/ Per QoL, Symptom Higher Defined Negative Expert- PatientFew SelfObserver Derived Generated Feedback Symptoms Symptom Psychosocial Screening Multiple Precisiona Categories Anchorsb Assessment Interview Rated

Questionnaire Content

Table 1. Recommended Assessment Methods for Palliative Medicine

Abbreviations: NRS, numeric rating scale; PS, performance status; QoL, quality of life; þ, appropriate; –, not appropriate. a Higher precision: (visual analogue scales [VAS]; 0-10 NRS). b Positive/negative anchors: changing the direction of items to reduce bias.

Recommendations Healthier patients Impaired PS Impaired Cognition

3

4

3. Cognitive impairment

2. Palliative medicine specific

1. Disease oriented

2. Research

3. Symptoms þ patient/caregiver needs, outcomes, QoL 1. Clinical practice

2. Cognitive assessment

(b) Multisymptom

(a) Single symptom

1. Symptom assessment

Type Disease or treatment related BPI32,33 Multidimensional Fatigue Inventory34 A Brief Pain Diary35 CAMPAS—R14 ESAS20 Symptom Monitor21 BCS36 Mini-mental State Exam36 CAM36 POS37 STAS13 ESAS Symptom monitor BPI ALSAQ-4038 LCSS39 ALSAQ-40 ESAS CAMPAS–R Symptom monitor Canberra Score Card23 DOLOPLUS40

Validated Instruments

– – þ þ þ þ – – – þ þ þ þ – – – – þ þ þ þ –

þ/–

Designed (þ) or Applied (–)

Observer rated; not validated in Pall Med

Brief and more often used

Rarely used; not validated in Pall Med

Clinical utility main objective; less time-consuming (brief, screening instruments) Can be specific, but usually try to answer more than 1 question

Clinical practice þ research

Clinical practice þ research

Clinical practice þ research Selected physical and/or psychological symptoms

Basic; symptom prevalence and one other dimension (eg, severity) Research oriented

Utility

Abbreviations: ALASAQ-40, Amiotrophic Lateral Sclerosis Assessment Questionnaire-40; BCS, Bedside Confusion Scale; BPI, Wisconsin Brief Pain Inventory; CAM, Confusion Assessment Method; CAMPAS–R, Cambridge Palliative Assessment Schedule; ESAS, Edmonton Symptom Assessment System; LCSS, Lung Cancer Symptom Scale; Pall Med, Palliative Medicine; POS, Palliative Outcome Scale; STAS, Support Team Assessment System.

Patient

Goal

Area

Domain

Table 2. Symptom Instruments in Palliative Medicine


Symptom Assessment in Palliative Medicine / Kirkova et al

5

To improve questionnaire practicality without loss of comprehensiveness, one possible solution is the identification of clinically important symptoms. These can be identified in 2 ways.

Addition of descriptors to visual analogue scales (VAS) might help improve completion rates, although again the principle of a continuum of measurement is then lost.27

1. Expert-derived approaches: These are more commonly used to identify symptoms physicians want to know more about. 2. Patient-generated questionnaires: These include what patients would like to be asked; however, these are seldom used as they are time and resource intensive.

Dimensions and outcomes. Multidimensional assessment (prevalence but also frequency, severity, distress, chronicity, relief, interference with life) is important to better understand symptoms but increases patient burden.28 In a comprehensive assessment, it may be better to start with dimensions that give decision-making information (eg, severity, distress). Combinations of dimensions (prevalence along with severity, frequency, or distress) may provide equivalent information with fewer questions. Effective treatment can then be measured by relief scales or changes in symptom severity or distress scale scores. The use of similar but separate intensity scales (for severity and distress) can be onerous and confusing. The measurement of distress by dichotomous (yes/no) questions may improve instrument clarity and brevity. The best symptom dimension for assessment of treatment effect is unknown.9

The 2 approaches can supplement one another; this improves content validity. Examples are the content design of the EORTC QLQ-C15 Pal and the Canberra Symptom Score Card.22,23 Feedback from experts and patients about language clarity, content appropriateness, and ease of completion should also be used to improve instrument utility. Time frame: precision and accuracy. The time frame of the questionnaire should be chosen to allow assessments that are both reproducible and sensitive to changes over time. ‘‘Today’’ and ‘‘Now’’ is relevant for current symptoms and daily follow-up. A major challenge is that important symptoms might have been experienced recently but are not necessarily present today. ‘‘During the past week’’ in contrast does not stress the present symptom experience. A more inclusive time frame of ‘‘Today or the past week’’ might be appropriate for initial assessment or weekly follow-up. This in turn may be less accurate because of recall bias, response shift, or symptom variability.24 Elicitation of average symptom severity (or distress) during a specified time frame might also improve accuracy. Scaling and practicality. Scaling levels and descriptors need to be specific, so one can clearly differentiate between each level. The language used should reflect patients’ own words and commonplace speech as much as possible. If 10 or fewer symptoms are measured, a 0-10 numerical rating scale might be practical.22 Categorical scales are more easily understood even by people with mild dementia and are preferred by cancer patients during radiotherapy.25,26 ‘‘Worse, same, better’’ for symptom response may be easier than the more subtle and psychometrically superior ‘‘worse, a little bit worse, same, a little bit better, better.’’ However, precision is diminished.

Validity and reliability. To provide accurate information for symptom management, instruments should be valid, reliable, and able to differentiate disease stages and changes over time. Validity and reliability testing has restricted generalizability due to limited testing, low enrollment in studies, and high attrition.28 In palliative medicine, validity may need to be balanced against practicality, which means that instruments with lower than desired standards of validity may be appropriate if proven practical in a given setting. Continuous repeated use of an instrument by patient and observer may improve its psychometric properties, but this needs confirmation. Instruments thus vary in their psychometric properties. When one is chosen based on appropriate content, scales, time frame, and psychometric properties, routine use in clinical practice becomes practical and valuable.

Clinical Symptom Assessment Methods Self-Assessment Patient-generated assessment can use either multiple symptoms or a more focused approach. The multisymptom approach (similar to traditional symptom 5


Table 3.

Multidimensional Symptom Assessment

Initial Level 1: Screening

Level 2: Multidimensional Level 3: Psychosocial

Follow-up

Final

1. Assess for cognitive impairment (delirium, dementia) 2. Screen as many symptoms as possible (self-assessment or interview) 3. Include common symptoms that can be clinically managed, that is, pain, dyspnea, anorexia, nausea, anxiety, depression, constipation (10-15 at most for sicker patients) 4. Avoid asking about symptoms (signs) that can be objectively identified, for example, wheezing, leg swelling 5. Define the most important symptoms to be managed from the patient’s perspective 6. Define the level of severity and/or distress ‘‘How severe?’’ ‘‘How distressful/bothersome?’’ 7. If a patient is confused or too sick refer to a caregiver 1. Ask about other symptom dimensions: for example, duration, frequency 2. Determine the extent of symptom relief and associated aggravating and alleviating factors 1. Assess activity and mobility 2. Assess mood, sleep, and anxiety 3. Family (caregiver) issues; plan a family conference 4. Explore social, existential, and financial problems 5. Determine overall QoL 1. Daily follow-up of identified symptoms and their distress 2. Ask for new symptoms 3. Healthier patients may repeat an extensive questionnaire. For example, every 72 hours 4. Ask about symptom relief and change in overall QoL 1. Use extensive questionnaires for healthier patients 2. Limit follow-up to identified symptoms for sicker patients 3. Assess distress and improvement 4. Review psychosocial issues

Abbreviation: QoL, quality of life.

reviews in conventional clinical assessment) can be conducted in 2 major ways: 1. Initial screening for multiple symptoms, followed by expanded assessment of those identified as of concern. 2. A comprehensive multidimensional assessment of every symptom (Table 3) to provide a detailed picture of symptom burden.

The first, more focused approach includes assessment of the most common or the most important symptoms (to the patient). This is the least biased way to obtain PROs. It can be performed as self-assessment or by interview. Self-assessment becomes difficult in those with poor performance status, which influences data collection.18,19 In comparison, clinical interviews may reduce missing or misleading information (because it can provide timely and direct guidance and clarify questions immediately) but may also introduce interviewer-related bias.

Observer Assessment Information from caregivers (eg family members, friends, significant others, nurses) is important 6

especially with those debilitated and confused. If a trustful relationship exists between the caregiver and patient, their assessment can be close in accuracy to PROs. They can also be reliable for expanded assessment of physical symptoms (but less so for psychological issues).29

Patient Factors and PROs Complex clinical factors affect symptom assessment. Information from an interview or self-assessment may be inaccurate for numerous reasons. Patients may intentionally underrate or overrate symptoms, be embarrassed to report certain symptoms, or choose their own (different) scale or reporting system to rate their symptoms. Unintentional disparities may arise from misunderstandings about what the questionnaire is asking, misinterpretation of the scale or reporting system, or lack of recognition of the context, time frame, location, or severity of a symptom. This is particularly the case if multiple symptoms compete for attention. Caregivers may provide useful collateral assessments, but again there may be discrepancies between their perception of symptoms and that of the patient’s. These may arise


from a desire on the part of the patient to protect family members from the distress of their illness or embarrassment about discussion of certain symptoms.

Assessment Chronology Assessment may be divided into initial, follow up, and final time frames (eg, before hospital discharge).

First assessment. The initial assessment provides important baseline information. It is usually the most detailed and thus may be the most time-consuming and burdensome (Table 3). Healthier patients might tolerate more detailed symptom enquiry during a single assessment. A multisymptom or more focused approach can be applied as directed by the person’s performance status and cognitive function. The former approach provides more information but may also require multidimensional assessment. To obtain more comprehensive baseline information, it is probably best to screen for multiple symptoms with a single question per symptom. For clinical utility, it can be performed in several stages. Initially, it is better to focus on those symptoms most relevant to immediate clinical management and any current or urgent condition. Common and distressful symptoms are best sought first; patients naturally tire and may overlook important details toward the end of lengthy interviews. Prioritization of symptoms from the patient’s perspective can improve outcomes.30 Symptom dimensions different from those in the screening question can be addressed later, when urgent or distressful symptoms have improved and hopefully fatigue is less. This approach can obviously influence the accuracy of symptom dynamics, as symptoms present initially may have now changed in character. Focused assessment (level 1 from Table 3) is recommended for those who are very ill or mildly confused. This may be limited to 10 to 15 symptoms in 1 interview; if they are severely impaired, only dichotomous (yes/no) screening may be possible. Finally, initial multisymptom assessment is best done by direct patient interview, performed in several dimensions.

Follow-up assessment. Symptoms change over time, but there are no agreed guidelines on the frequency

7

and content of longitudinal assessments. Severe and important symptoms may change faster than milder or less important ones, but this is inadequately researched.30 It is also unclear how many symptoms to assess at follow-up: those present initially along with newly volunteered ones or to screen all repeatedly using the same initial comprehensive checklist? A comprehensive assessment is likely necessary at some regular intervals to determine how symptom pattern changes over time. To abbreviate and guide follow-up assessment, some symptoms, more frequently associated with greater symptom burden (pain, fatigue),31 might be used as sentinel symptoms, but this needs further research.

Final assessment. At this point, a comprehensive assessment could ensure that no symptoms are overlooked and so measure treatment outcomes. This can only be done if an earlier similar review has been conducted. Assessment methods can thus be approached either with detailed attention to specific symptoms or multiple symptoms at several dimension levels. Psychometric elegance is greatly influenced by patient and caregiver factors in palliative medicine. The initial, follow-up, and final assessments are all variations of 1 continuous process, and although similar, the number and type of symptoms assessed may vary at different time points to increase efficacy and practicality.

Conclusions No consensus exists for standardized symptom assessment in palliative medicine. Limited research data provide some methodological guidance. Practicality should govern questionnaire development and selection. This may require that some desirable psychometric qualities be traded for simplicity. Brevity should be balanced against comprehensiveness, as sicker patients usually have more symptoms but less stamina. To obtain comprehensive assessments, symptoms and domains may be categorized into various levels of importance. Screening for multiple symptoms should probably precede multidimensional assessment of individual symptoms. Symptoms important to patients should be assessed and managed as a priority, with a more focused utilitarian approach for the very ill and confused. Symptoms with limited management options should not be 7


neglected as they provide valuable information on the total symptom experience. Caregiver information is helpful for measurement of physical symptoms, performance, and cognitive status.

Acknowledgment Cleveland Clinic Taussig Cancer Center of the Harry R Horvitz Center for Palliative Medicine is a world health organization project in palliative medicine.

References 1. Cleeland CS. Symptom burden: multiple symptoms and their impact as patient-reported outcomes. J Natl Cancer Inst Monogr. 2007:37):16-21. 2. Ingham J, Portenoy RK. The measurement of pain and other symptoms. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford, New York, Tokyo: Oxford University Press; 1998:203-219. 3. Boyle DA. Delirium in older patients with cancer— implications for practice and research. Oncol Nurs Forum. 2006;33(1):71-78. 4. Clinical skills. Chapter 1. The practice of medicine. In: Harrison’s Internal Medicine, Part 1. Introduction to clinical medicine. http://www.accessmedicine.com/ content.aspx?aID¼50029&searchStr¼clinicalþ examination#50029. Accessed on September 17, 2006. 5. Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Sjogren P. Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer. 2002;38(6):788-794. 6. Skinner KM, Miller DR, Lincoln E, Lee A, Kazis LE. Concordance between respondent self-reports and medical records for chronic conditions: experience from the Veterans Health Study. J Ambul Care Manage. 2005;28(2):102-110. 7. Stromgren AS, Groenvold M, Sorensen A, Andersen L. Symptom recognition in advanced cancer. A comparison of nursing records against patient self-rating. Acta Anaesthesiol Scand. 2001;45(9):1080-1085. 8. Walsh D, Donnelly S, Rybicki L. The symptoms of advanced cancer: relationship to age, gender, and performance status in 1,000 patients. Support Care Cancer. 2000;8(3):175-179. 9. Keller M, Sommerfeldt, Fischer C, et al. Recognition of distress and psychiatric morbidity in cancer patients: a multi-method approach. Ann Oncol. 2004;15(8): 1243-1249. 8

10. Ingham JM, Portenoy RK. Symptom assessment. Hematol Oncol Clin North Am. 1996;10(1):21-39. 11. Cleeland CS, Ryan KM. Pain assessment: global use of the Brief Pain Inventory. Ann Acad Med Singapore. 1994;23(2):129-138. 12. Twycross R, Harcourt J, Bergl S. A survey of pain in patients with advanced cancer. J Pain Symptom Manage. 1996;12(5):273-282. 13. Munch TN, Stro¨mgren AS, Pedersen L, Petersen MA, Hoermann L, Groenvold M. Multidimensional measurement of fatigue in advanced cancer patients in palliative care: an application of the multidimensional fatigue inventory. J Pain Symptom Manage. 2006;31(6):533-541. 14. Maunsell E, Allard P, Dorval M, Labbe´ J. A brief pain diary for ambulatory patients with advanced cancer: acceptability and validity. Cancer. 2000;88(10): 2387-2397. 15. Ewing G, Todd C, Rogers M, Barclay S, McCabe J, Martin A. Validation of a symptom measure suitable for use among palliative care patients in the community: CAMPAS–R. J Pain Symptom Manage. 2004;27(4): 287-299. 16. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliative Care. 1991;7(2):6-9. 17. Hoekstra J, Bindels PJE, van Duijn NP, Shade E. The symptom monitor. A diary for monitoring physical symptoms for cancer patients in palliative care: feasibility, reliability and compliance. J Pain Symptom Manage. 2004;27(1):24-35. 18. Hjermstad M, Loge JH, Kaasa S. Methods for assessment of cognitive failure and delirium in palliative care patients: implications for practice and research. Palliat Med. 2004;18(6):494-506. 19. Higginson I, Donaldson D. Relationship between three palliative care outcome scales. Health Qual Life Outcomes. 2004;2:68. 20. Higginson IJ, McCarthy M. Validity of the Support Team Assessment Schedule: do staffs’ ratings reflect those made by patients or their families? Palliat Med. 1993;7(3):219-228. 21. Jenkinson C, Fitzpatrick R, Brennan C, Bromberg M, Swash M. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/ motorneurone disease: the ALSAQ-40. J Neurol. 1999;246(suppl 3):III16-III21. 22. Lutz ST, Huang DT, Ferguson CL, Kavanagh BD, Tercilla OF, Lu J. A retrospective quality of life analysis using the Lung Cancer Symptom Scale in patients treated with palliative radiotherapy for advanced nonsmall cell lung cancer. Int J Radiat Oncol Biol Phys. 1997;37(1):117-122. 23. Barresi MJ, Shadbolt B, Byrne D, Stuart-Harris R. The development of the Canberra symptom score cared: a


24.

25.

26. 27.

28.

29.

30.

31.

32.

tool to monitor the physical symptoms of patients with advanced tumours. BMC Cancer. 2003;3:32. Holen JC, Saltvedt I, Fayers PM, et al. The Norwegian Doloplus-2, a tool for behavioural pain assessment: translation and pilot-validation in nursing home patients with cognitive impairment. Palliat Med. 2005;19(5):411-417. Peruselli C, Camporesi E, Colombo AM, Cucci M, Mazzoni G, Paci E. Quality-of-life assessment in a home care program for advanced cancer patients: A study using the Symptom Distress Scale. J Pain Symptom Manage. 1993;8(5):306-311. Kaasa S, Loge JH. Quality of life assessment in palliative care. Lancet Oncol. 2002;3(3):175-182. Sharpe L, Butow P, Smith C. Changes in quality of life in patients with advanced cancer: evidence of response shift and response restriction. J Psychosom Res. 2005; 58(6):497-504. Visser MR, Smets EM, Sprangers MA, de Haes HJ. How response shift may affect the measurement of change in fatigue. J Pain Symptom Manage. 2000;20(1):12-18. Homsi J, Walsh D, Rivera N, et al. Symptom evaluation in palliative medicine: patient report vs. systematic assessment. Support Care Cancer. 2006;14(5):444-453. Groenvold M, Petersen MA, Aaronson NK. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer. 2006;42(1):55-64. Fortner B, Okon T, Schwartzberg L, Tauer K, Houts AC. The cancer care monitor: Psychometric content evaluation and pilot testing of a computer administered system for symptom screening and quality of life in adult cancer patients. J Pain Symptom Manage. 2003;26(6):1077-1092. Pijls-Johannesma MCG, Pijpe A, Kempen G, Lambin P, Dagnelie PC. Health related quality of life assessment

33.

34.

35.

36.

37.

38.

39.

40.

9

instruments: a prospective study on preference and acceptability among cancer patients referred for radiotherapy. Eur J Cancer. 2005;41(15):2250-2256. Closs SJ, Barr B, Briggs M, Cash K, Seers K. A comparison of five pain assessment scales for nursing home residents with varying degrees of cognitive impairment. J Pain Symptom Manage. 2004;27(3):196-205. Hauser K, Walsh D, Davis MP, Lagman RL, LeGrand SB. The pitfalls of visual analogue scales in palliative medicine. Eur J Cancer. 2007;14(3):99-102. Kirkova J, Davis MP, Walsh D, et al. Symptom assessment instruments—a systematic review. J Clin Oncol. 2006;24(9):1459-1473. Nekolaichuk CL, Maguire TO, Suarez-Almazor M, Rogers WT, Bruera E. Assessing the reliability of patient, nurse and family caregiver symptom ratings in hospitalized advanced cancer patients. J Clin Oncol. 1999;17(11):3621-3630. Stro¨mgren AS, Sjogren P, Goldschmidt D, Petersen MA, Pedersen L, Groenvold M. Symptom priority and course of symptomatology in specialized palliative care. J Pain Symptom Manage. 2006;31(3):199-206. Chang VT, Hwang SS, Feuerman M, Kasimis BS. Symptom and quality of life survey of medical oncology patients at a veterans affairs medical center: a role for symptom assessment. Cancer. 2000;88(5):1175-1183. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer. 1994;30A(9):1326-1336. Bausewein C, Farquhar M, Booth S, Gysels M, Higginson IJ. Measurement of breathlessness in advanced disease: a systematic review. Respir Med. 2007;101(3):399-410.

For reprints and permissions queries, please visit SAGE’s Web site at http://www.sagepub.com/journalsPermissions.nav

9