History and evolution of quality of life in

History and evolution of quality of life in

History and evolution of quality of life in head and neck cancer Hisham Mehanna Consultant Head Neck Surgeon University Hospitals Coventry Warwickshire & Heart of England Foundation Trust, Birmingham Hon Senior Lecturer, Warwick Med School, UK Leroy A Schall, 1954. It is hard properly to evaluate human suffering: the blind say they would rather be blind than deaf;

whilst the patient without a voice considers himself fortunate that he is neither blind nor deaf. Overview Definitions Characteristics of QoL History of QoL concept Evolution of QoL in HNC Evolution of studies QoL Questionnaires Current state Future uses Summary

Definitions Why is QoL important? Impact of HNC on daily functions disfigurement HNC patient requirements over and above other cancer pts Several different treatments with equivalent survival rates Definitions

Health-related Quality of life Gap between where patient is (experience) and where they would like to be (expectations) and perceived and actual goals Calman 1987 Mehannas Health related QoL Reality Expectation Characteristics of QoL Concept

self-reported subjective multi-dimensional changes over time Health-related QoL = ones personal, subjective assessment of general well-being which can be regarded as a composite scale involving many contributing domains.

Tenants of QoL assessment Global vs component measures Important domains physical function psychological state social interaction somatic sensation / symptoms Generic vs disease specific QoL Domain - specific questionnaires History of QoL concept Voltaire 1694-1761

doctors are men who prescribe medicine of which they know little, to cure diseases of which they know less, in human beings, of which they know nothing Jessett 1886 On maxillary cancer ... the only hope we have of permanently benefiting the patient suffering from this disease is by free and extensive operations, i.e., thoroughly removing the whole of the cancerous tissues and getting to healthy structures.

Nahum and Golden 1963 Since the common tendency of the physician and family is to be sympathetic toward the postlaryngectomy patient, it is often necessary to lean a bit in the opposite direction and to deal with the situation lightly. Watson 1966 on breast cancer an affliction of an easily disposable utilitarian appendage evidence (of psychological trauma) will usually have been produced by the enquiry

(into QoL) rather than disclosed by it. The adoption of a casual attitude by the doctor before the operation and throughout the follow-up examinations will go a long way towards eliminating these untoward and unnecessary occurrences Hippocrates c. 460-377 BC Some patients though conscious that their condition is perilous, recover their health simply through their contentment with the goodness of the physician M.R. Ewing & Hayes Martin, 1952

"in deciding the method of treatment we should not, in our eagerness to achieve cure, lightly disregard the crippling that may result from our surgical endeavours". Ormerod, 1954 described explaining to a patient what is entailed in a laryngectomy, including counselling by a speech therapist and interviews with previous patients. Hospice movement, 1960s pioneered by :

Cecily Saunders in Britain, and Elizabeth Kubler-Ross in the U.S.A. Heckscher 1960 Essay to Dwight Eisenhowers Commission on National Goals a society which puts a value on the quality of its national life will want to act resolutely Medline keyword 1977

1978-80 200 papers 1987 400 papers 1993 1,255 papers 1996 3,130 papers 1999 4,564 papers 2002 6,288 papers 2005 9,450 papers

QoL Questionnaires Karnofsky 1948 lung cancer Functional status scale Subjective Improvement scale Three category scale Priestman & Baum 1976 10 item questionnaire Breast cancer Modern approach to QoL measurement HNC QoL the start

Non-validated, unidimensional measures Cross-sectional studies Descriptive then quantitative Pitkin 1953 first study, 61 Lx pts, psychosocial 1980s-90s prospective studies, validated questionnaires

Johnston 1982 Browman, 1993 first RCT Hassan & Weymuller 1993 Morton 1995 Guidelines on devt of QLQ 1. Decide the Hypothesis to be tested 2. Decide on definition of Quality-of-life to be used 3. Disease-specific questionnaire to include: Disease- and Treatment-related symptom

scores; Health- and Disease-status a. Patient data to be self-reported b. Enquiry on domains of functional status to include: Psychological functioning Socio-sexual functioning Physical functioning Global QL measure (patient-generated) 4. Field testing and fine-tuning of questionnaire

5. Instruments should have proven, or be checked for: Reliability Validity Responsiveness/Sensitivity 6. Design longitudinal study Kirshner and Guyatt 1985 Assessment of validity Psychometric criterion

Biomedical terminology meaning Content validity Comprehensiveness Questions cover relevant issues Face validity Credibility

Questions are clear Criterion validity Accuracy Performance of instrument in comparison to a gold standard Discriminant validity Responsiveness

Ability and sensitivity to detect change. Construct validity Biological sense Ability of instrument to behave in a fashion consistent with a theoretical framework Reliability Reproducibility

Ability to produce similar results on retesting Mehannas Ideal tool Current state Current state Longitudinal studies Many (validated) questionnaires Routine use of QoL Research outcomes Clinical outcomes

Current state Longitudinal studies relative QoL units Longitudinal studies 80 75 70 65 60 55 50

45 40 time from diagnosis (mnths) Morton , 1995,2003, Hammerlid 2001, List 1996, Terrell 1999, Weymuller 2000, Rogers 1999 Deterioration in the long-term (10 year) quality of life of head and neck cancer survivors Mehanna and Morton, Clin Otol 2006 Results : Long-term QL Mehanna and Morton 2006 Life Satisfaction Score

10 yr survivors 65 n = 200 Full cohort 60 something happened p < 0.001 55

n: 184 n: 124 1y 2y n: 43 0

3m 10y Current state Longitudinal studies Many (validated) questionnaires "choosing an instrument is an exercise in trade offs" Moinpour et al ,1989 Choosing which instrument to use poses

a challenge for investigators of QOL in head and neck cancer...No one instrument is ideal for all purposes. Ringash and Bezjak, 2001 HNC Questionnaires EORTC QLQ C30/ H&N35 UWQOL FACT G/H&N


S both both S both S S

Validated + + + +/- +/- +/-

+/- +/- No of items 65 12 27 29

19 39 21 22 No of domains 6 9

4 3 4 5 4 6 Self -administer

+ + + + + + -

- Global measure + + - + -

+ + - Summary score - + +

- ? + - + Cross-cultural validation / translation

+ Several languages - +/ongoing - - +/Japanese,

German, Spanish - - B B B ?

? B B short 5 15 ?

? 11 10 General (G) or specific (S) Scoring Time to complete C30- B

HN35-W 18 Lesson 1 Avoid obscure questionnaires Current state Longitudinal studies Many (validated) questionnaires Routine use of QoL Research outcomes Clinical outcomes? QoL use in UK

29% BAHNO respondents used quality of life questionnaire (QLQ) Major impediments: lack of resource and time Kanatas & Rogers, Ann R Coll Surg Engl, 2004 QoL use in Australasia 34% had ever used QLQ Physicians > surgeons: clinical trials 13% current users only 1.5% routine clinical practice Mehanna and Morton, JLO, 2006

Impediments to use Time consuming/ lack resource No clinical value Dont know how to use info Patient dont like it Aus-NZ 34% UK 57%

34% 11% 16% 13% 7% 10% Most are clinician based Lesson 2

K.I.S.S. - Keep it simple for surgeons Current uses Providing patients with better information on course of disease and prognosis. Assessing new and existing treatments and techniques. Weighing up treatment options and aiding patient decision making. Better information Most patients want information

Semple 2002 Better info improves QoL and satisfaction, decreases anxiety Most HNC pts want more info from MDT Zeigler, 2004 Lesson 3: Better information needed Current uses Providing patients with better information on course of disease and prognosis.

Assessing new and existing treatments and techniques. Assessing techniques New Therapies T2 larynx laser vs RT T3 tonsil tumour surgery vs CRT Techniques Oropharyngeal surgery primary closure better swallowing than flap IMRT for parotid sparing - PARSPORT Current uses

Providing patients with better information on course of disease and prognosis. Assessing new and existing treatments and techniques. Weighing up treatment options and aiding patient decision making. Patient priorities Patients and clinicians have different priorities Patient priorities for treatment: Cure, then Survival, then QoL issues

List, 2000 BUT priorities very variable between patients The future Future uses Interpreting quality of life studies Improving the consultation and followup Interventions to improve quality of life and psychosocial well-being

Future uses Interpreting quality of life studies QoL study interpretation Current : statistical differences Need to identify minimum important clinical differences (MICD) for each questionnaire Reporting studies needs to improve Minimum Important Clinical Difference If after intervention A, QoL score changed from 20 to 25 ( p=0.01)

Statistically significant But in MICD =10 pointsthis is intervention is unlikely to be useful Piccirillo, 2006 Minimum Important Clinical Difference If after intervention A, mean QoL score change= 5 ( p=0.01), 95%CI 1-15 And MICD =10 points AND 20% achieved a diff score more than 10 THEN this intervention is beneficial to 20% of patients i.e. 20% of patients achieving benefit Compare to intervention B in which only 5% patients achieved

clinical benefit ( ie score change of more than 10%) Piccirillo, 2006 Future uses Interpreting quality of life studies Improving the consultation and follow-up Improving consultation Follow-up very variable surveillance oriented (Zeigler, 2004) Use of routine HRQoL assessment improves: QoL , emotion and communication

2004) (Velikova, Use of HRQoL data collection by touch screen technology : accepted and easy to use by HNC patients (Millsopp 2006, Fisher 2006) UK Head Neck QoL Collaboration (HN-QoL) 15 researchers 7 universities QoL-driven HNC clinic concentrating on follow-up

Study 1A Patient preferences of QLQs Phase 1 Study 1B clinician preferences of QLQs

Decision on QLQ Study 3 consultation factors BME Phase 2 Phase 3 Study 2 consultation factors Study 4

computerised QLQ Generation of the QoL driven cancer clinic model Study 5: Piloting the model Nurse versus doctor - led Paper versus IT based questionnaire Future research programme: assessing interventions in the clinical setting to improve QoL

Group members

Prof Rob Newell , Bradford HN QoL Dr Cherith Semple, Belfast HN QoL, CNS Dr Galina Velikova, Leeds QoL and Consultation Dr Kaye Radford, Birmingham HN QoL, SLT Dr Sheila Fisher, Leeds HN, QoL Prof Yvonne Carter, Warwick QoL and palliation Prof Mark Johnson, Leicester health ethnicity and diversity Dr Ann Adams, Warwick health decision making Dr Jane Kidd, Warwick consultation factors Dr Chris Buckingham, Aston health computerisation Mr Raj Sandhu, Warwick HN , surgery

Prof Janet Dunn, Warwick clinical trials and stats Lucy Ziegler, Bradford HN QoL Dr Teresa Pawlikowska, Warwick patient enablement Mr Hisham Mehanna, Warwick HN QoL, surgery Future uses Interpreting quality of life studies Improving the consultation and followup Interventions to improve quality of life and psychosocial well-being Screening for problems Interventions & Screening Interventions are the

ultimate aim that we strive for Screening is an integral part of this Summary Patients perceptions differ significantly from clinicians. QL usually decreases immediately after treatment, then gradually increases to pre-treatment levels, usually by 12 months.

QL measurement should be routine, prospective, and long-term; using brief, patient-reported, validated tools, with both general and disease specific modules. QL is an integral part of assessment of outcomes in head and neck cancer (HNC).

QoL studies need to be reported using MICDs. QL should be incorporated in to the management pathway of the patient to help improve patient care. More work on use in routine clinical use and on interventions needed. ?

3rd Masters MDT dissection course in head and neck operative surgery Coventry, April 30- May 4 2007 Guest Speakers Prof Ashok Shaha, MSKCC

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