DYSPNEA AND QUALITY OF LIFE IN CHRONIC RESPIRATORY FAILURE ; SCALES AND QUESTIONNAIRES

1. DYSPNEA AND QUALITY OF LIFE IN CHRONIC RESPIRATORY FAILURE ; SCALES AND QUESTIONNAIRES Prof. Dr. Öznur AKKOCA YILDIZ Ankara University, Faculty of Medicine, Department of Pulmonary Medicine

2. DYSPNEA • Dyspnea is an uncomfortable awareness of breathing • or an increased inspiratory difficulty effort • or can not get enough air in • A subjective sensation • Differences in language, race, culture, sex and previous experience can all change the perception

3. DYSPNEA • The assessment of dyspnea is a critical part of patient evaluation and management when cardiopulmonary disease is present • The patient’s perception of dyspnea does not necessarily increase with worsening lung function • It has emphasized dyspnea during everyday activity as an important indicator of disease impact, severity and survival

4. DYSPNEA The 2 purpose of measuring dyspnea are: 1-To differentiate between patients who have less dyspnea and those who have more dyspnea 2- To determine whether dyspnea has change over time and/or as a result of treatment

5. DYSPNEA SCALE • Characteristics • Reliability • Validity • Responsiveness

6. DYSPNEA SCALES • Dyspnea in activities of daily living • Dyspnea during exercise test

7. DYSPNEA SCALES • Medical Research Council scale(MRC) • Oxygen Cost Diagram (OCD) • Baseline Dyspnea Index (BDI) • Transition Dyspnea Index (TDI)

8. DYSPNEA SCALES • Borg scale • Visual Analogue Scale (VAS)

9. MRC • 1952 , Fletcher, five-point scale • A revised version of the original five-point scale; ‘Medical Research Council’ (MRC) scale • Undimentional scale • MRC scale considers certain activities (such as walking) • MRC scale has been used for diagnostic evaluation and in clinical trials • A discriminative instrument • It has been shown to predict survival in patients with COPD • Reliability, Validity, Responsiveness • AJCCM 1999;159:321 • Proc Am Thorac Soc 2006;3:234-38 • AJCCM 2008;31:416

11. Dyspnea scales • The MRC scale is a simple and valid method of categorizing patients with COPD • There was a significant association between MRC grade and shuttle distance, SGRQ and CRQ scores, but was not associated with FEV1 • Bestall JC, Thorax 1999;54:581

14. MRC • It may be difficult with this scale to establish a change in dyspnea; a notable limit to the scale relates to the lack of clear limits between grades • Unresponsive to interventions such as pharmacotherapy • The utility of the MRC scale is not recommended

15. OCD • The OCD is a 100 mm vertical visual analog scale with 13 activities listed at various points along the line corresponding to increasing oxygen requirements for their completion, ranging from sleeping to walking uphill

16. Brisk walking uphill medium walking uphill Brisk walking on the level heavy shopping slow walking uphill Medium walking light shopping bedmaking Slow walking on the level standing washing yourself sitting sleping 0

17. BDI • Mahler , 1984 • Functional impairment (performance of daily activities and occupation) • Magnitude of task (severity or difficulty of physical activities) • Magnitude of effort (degree of exertion on effort) Multidimensional scale BDI Total score (0-12) The lower score, the more severe the dyspnea • Mahler DA, Chest 1984;85:751-58

18. TDI • TDI is an evaluative instrument used to quantify the changes in dyspnea from initial or baseline state • Pharmacotherapy and rehabilitation • Change in functional impairment • Change in magnitude of task • Change in magnitude of effort • TDI total score (-9, +9) • These scales have been shown to be valid, reliable, responsive

19. BDI and TDI • Self-administered and computerized versions of BDI and TDI (SAC BDI and TDI) • BDI; one component changed from , “climbing three flights of stairs“ to “climbing one flights of stairs “ • TDI; Two changes: an insert was provided on the computer screen of the descriptor selected for the corresponding component of the BDI. A bidirectional VAS was also created for each component of the TDI (+2,+4,+6) (-2,-4,-6) • Sac TDI is more sensitive to changes in dyspnea than MRC • Mahler DA, J COPD 2004;1:165-72 • Jones P, Respir Med 2005;99:s11

20. BDI and TDI • Orginal BDI/TDI; • A computer and the software program are not required • A basic knowledge of respiratory disease and view a training video or observe an interview between a patient and an experienced interviewer • It takes 3-4 min for either the original version

21. BDI and TDI Multicenter (89 clinical centers, 18 countries) A retrospective analysis of a cohort of 997 COPD patients Validity and pattern of response of the BDI and TDI • BDI was correlated with dyspnea diary score and symptom-activity comp. SGRQ…….concurrent validity • TDI was also correlated with changes DD, SGRQ scores • The association between baseline FEV1 and BDI, and FEV1 and TDI……construct validity • TDI responders used less suppl. Salbutamol, had fewer exacerbation, had improved heath status • The patterns of response confirm a 1-unit change in the TDI focal score as being clicically important • Witek TJ, Mahler DA, Eur Respir J 2003;21:267

22. BORG SCALE • Borg, 1982 • Borg scale incorporates nonlinear spacing of verbal descriptors of severity corresponding to specific numbers • Borg scale should be easier for patients to use for exercise prescription • This scale allows direct comparisons between individuals or groups

23. 0 : Nothing at all 0,5: Very very slight 1 : very slight 2 : Slight 3 : Moderate 4 : Somewhat severe 5 : Severe 6 : 7 : Very severe 8 : 9 : Very very severe 10 : Maximal

24. VAS • Visual analog scale • VAS consists of a line, usually 100 mm in length, placed either horizontally or vertically on a page, anchors to indicate extremes of a sensation • No breathlessness and intolerable breathlessness • VAS score is accomplished by measuring the distance from the bottom to the level indicated

25. Dyspnea scales 24 OAD patients (COPD, asthma, CF), 12 healthy subjects • Clinical dyspnea scores (MRC, OCD, and BDI) are significantly correlated with FEV1 and FVC • Clinical methods for rating dyspnea are interrelated • Mahler DA, AM Rev Respir Dis 1987;135:1229

26. Dyspnea scales 20 Patients with COPD, 12 controls • MRC, BDI, Borg scale • PFT, CPET, ABG MRC :2.10±0.55 BDI: 5.65±1.60 BORG : 4.55±1.23 These scales were correlated with each other and FEV1, FVC, FEV1/FVC, FEF25-75, PEFR Akkoca Ö ve ark Tüberküloz ve Toraks 2001;49:431

27. Dyspnea scales • 30 Patients with COPD • MRC, BDI, OCD, Borg, VAS • MRC: 1.67±1.21,BDI:6.87 ±3.31,OCD:4.37 ± 2.84 • Borg: 1.63 ±2.36, VAS:2.13 ±2.53 • MRC and BDI were correlated with FEV1 • MRC, Borg scale and VAS • Özalevli S, Toraks Dergisi 2004;5:90

28. Dyspnea scales 62 COPD patients PFT, 6 MWT MRC, OCD, BDI, CRQ Dyspnea scale and quality of life correlated significant with exercise performance but showed no significant correlation with lung function parameters • Exercise capacity, dyspnea and quality of life ratings, • Airway obstruction, • Pulmonary hyperinflation • Wegner RE, Eur Respir J 1994;7:725

29. Dyspnea scales • Dyspnea , clinical indicator ? 90 COPD with patients Spirometry, 6 minute walking tests ATS scale, Psychological questionnaires, SGRQ, CRQ • Severe dyspnea was associated with significantly lower FEV1, shorter 6MWT distance, increased breathlessness with exercise,increased anxiety • Dyspnea correlated more strongly with HRQL than spirometric parameters • Schlecht NF, Chronic Respiratory Disease 2005;2:183

30. Dyspnea scales • Although spirometry is often used to evaluate disease severity, dyspnea better reflect overall disease impact among COPD patients. • Schlecht NF, Chronic Respiratory Disease 2005;2:183

31. HEALTH RELATED QUALITY OF LIFE QUESTIONNAIRES

32. Health related quality of life • Restriction to daily activity and impaired quality of life are important outcomes of COPD • The relationship between activity and quality of life • The relationship between symptoms and activity • Activities not possible due to symptoms • Activities that are possible but at a cost of greater symptoms • Activities carried out more slowly to avoid symptoms • Activity limitation may be a central determinant of impaired quality of life due to poor health • Voluntary limitation • Involuntary limitation • Jones PW, J COPD 2007;4:273

33. Muscle wasting Reduced mobility (DISABILITY) Exercise limitation (IMPAIRMENT) Airway obstruction Breathlessness External factors Attitudes and expectations Depression and anxiety Life style restriction (HANDICAP)

34. Health related quality of life • “Health status” measurement provides a standardized method of assessing the impact of disease on patients daily lives, activity and well-being. • “Quality of life” The gap between that which is desired in life and that which is achieved • “Health related quality of life ”

35. Health related quality of life • Symptoms, health perceptions, and quality of life are often included in the concept domain of HRQL • The components of quality of life include symptoms, functional status, mood and social factors • Questionnaires can measure these components individually or with a composite score

36. Health Related Quality Of Life Questionnaires • 1-General health status • For the assessment of general health status which can be change with any physical or emotional diseases • 2-Disease-specific health status • Specific quality of life questionnaires. Sensitivity is higher than the general health status questionnaires, because they have special questions for the specific diseases.

37. General Quality of Life Questionnaires • 36-Item Short Form Health Survey (SF-36) • Sickness Impact Profile (SIP) • Quality of Well-Being Scale (QWB) • Nottingham Health Profile (NHP )

38. Disease-Specific Quality of Life Questionnaires • Saint George Hospital Respiratory Questionnaire (SGRQ ) • Chronic Respiratory Disease Questionnaire (CRQ) • Quality of Life in Respiratory Illness Questionnaire (QoL-RIO) • Pulmonary Functional Status & Dyspnea Questionnaire-Modified Version (PFSDQ-M) • Pulmonary Functional Status Scale (PFSS)

39. GENERAL

40. Short Form 36 Health Survey SF-36 • 1988, “developmental”, 1990, “standard” form, Ware JE Medical Outcomes Study (MOS) • 1991, IQOLA (to translate and to validate) • 1996, version 2.0 of the SF-36 (The international version) • The SF-36 is a generic measure of health status • It is multi-purpose which contains 36 questions • Physical and mental measures • Eight-scale profile of score • 5-10 minutes, 0 (best score) to 100 (worst score) • Self or trained interviewer Ware JE, J Clin Epidemiol 1998;51:903

42. Short Form 36 Health Survey SF-36 The SF-36 has been translated in more than 40 countries • Reliability usually exceed 0.90 • Validity tests involving physical criteria ranged from 0.43 to 0.93 mental criteria ranges from 0.60 to 1.07 • It has been useful in • comparing general and specific populations, • comparing the relative burden of diseases, • differentiating the health benefits produced by wide range of different treatments and • screening individual patients • Ware JE, SPINE 2000;25:3130

44. Sickness Impact Profile SIP • Gilson, Bergner, 1976 (revised 1981) • Medical Outcomes Trust, information and permission • Generic measure used to evaluate the impact of disease on both physical and emotional functioning • 136 items, 2 sub-scores (physical and psychosocial) • 12 categories (sleep and rest, eating, work, home management, recreation and pastimes, ambulation, mobility, body care and movement, social interaction, alertness behavior, emotional behavior, communication) • 20-30 minutes • Self, interview

45. Sickness Impact Profile SIP • The measure has been used in patients with COPD and asthma • Validity • Reliability • Responsiveness • American Thoracic Society. Quality of life resource. www.atsqol.org

46. Quality of Well-Being Scale QWB • An interviewer-administered general health related quality of life questionnaire • Economic evaluation for cost-effectiveness studies • 4 categories; Symptom/complex, mobility, physical activity, and social activity. • 12-20 minutes • Scoring : 0(death) to 1.0 (asymptomatic) • Reliability and validity are reported

47. Nottingham Health Profile NHP • 6 dimensions ; 38 items • Physical mobility, pain, social isolation, emotional reactions , energy, sleep • Self • 5 to 10 minutes • Dimension scores range from 0 to 100, higher the score the greater the health problem • Reliability, validity and responsiveness are reported

48. DISEASE-SPECIFIC

49. Saint George Respiratory Questionnaire (SGRQ) • 1992 , PW Jones • The patients with fixed and reversible airway obstruction • Three domains: • Symptoms (frequency, severity); • Activity (activities that cause or are limited by breathlessness); • Impacts (social functioning, psychological disturbances resulting from airways disease) • Symptoms (5 point likert), Activity and Impacts (yes/no) • 76 item, 10 min. • Self, face-to-face, telephone interview • Scoring range from 0 to 100 (worst score) • A change of 4 units is deemed clinically significant (MCID)

50. SGRQ • In COPD, SGRQ has been used in rehabilitation and pharmaceutical studies • COPD progression (FEV1) • Survival • Exacerbation frequency