1. OCRCC’s experiences in collecting HQoL data & preliminary findings
Raja Latifah RL, Atiya AS, Zain RB, Razak IA, Doss JG, Ghani WMN, Saub R, Ismail R.
QoL in H & N Cancer
5th International Workshop, Liverpool
2-3 November 2006

5. Aims of presentation To share OCRCC’s experiences:
Challenges faced in collecting HQoL data;
Preliminary data of HQoL status upon diagnosis prior to treatment

6. Selecting the interim instrument
Those involved in discussion (14)
Dentists/ doctors familiar with social health surveys
Medical statistician
Oral surgeons
ENT surgeons
Oncologists
Pathologists
Scientists
Nurses/ research assistants

7. Criteria for instrument
Need for HQoL tool for oral cancer patients in Malaysia in the interim period.
Acceptable to clinicians & oral ca patients
Short time; not more than 15 minutes
Easy to use; not many items
Easy to response; not too many responses
For face-to-face interview not self administered
Easy to understand

8. Selecting the interim instrument
UW-QoL Ver. 4
EORTC General and EORTC H & N
FACT

9. Pre-tested & Modified UW-QoL
12 items + 3 general
No Q provided just item
3, 4, 5 possible responses
OCRCC modified
11 items + 1 impact
Removed anxiety, saliva, general Qs
Added “opening mouth”
Provided Qs
4 possible responses; no problem, some problem, severe problem, “Others”

10. 11 Domains + 1 Impact

11. The question UW-QOL Ver. 4 Self administered
This questionnaire asks about your health and quality of life over the past 7 days. Please answer all the questions by checking one box for each question.
2. Appearance
OCRCC modified
Interview
I am going to ask you questions in relation to your oral cancer. (Only 1 response to be ticked for each question at each visit)
Over the past 7 days did/ do you find any change in your appearance?

12. Responses UW-QOL Ver. 4 There is no change in my appearance
The change in my appearance is minor
My appearance bothers me but I remain active
I feel significantly disfigured and limit my activities due to my appearance
I cannot be with people due to my appearnace
OCRCC modified
Patient feels no change in appearance
Patients feels there is a minor change in appearance
Patient feels disfigured and avoids meeting people
Others (Specify…………)

13. Data collectors Retired nurses & DSAs
Trained data collectors: 2 workshops, on the ground assistance; hotline at HQ
Q in simple English
Training to understand meaning of Qs and information required
How to conduct interview & ask Qs.
Provided equivalent words in the national language

14. Data collection Face-to face interview
At 1st visit (within 1-3 weeks patient informed of diagnosis). Other Qs as well.
Subsequent interviews: 3, 6, 12 months; 2,3, 4, 5 years after 1st visit. Only HQoL
Data collection started in late 2003
Development of software for data capture and computerization of data began in 2005

15. Workshop: Field problems faced by research clerks.
15 & 16 January, 2005
NGT & FGD used

22. Preliminary analysis
57 patients with complete data on staging and HQOL
Diagnosed between Dec 2003 – Dec 2005

23. Socio-demographic characteristics
66.7% female; 33.3% male
56.1% Indians, 14% Malays; 14% Chinese; 15.9% Indigenous
14% ≤40 years, 43.9% 41-59, 42.1% ≥60
Mean age ±11.84 years; yrs
56.1% married; 43.9 single/divorced/widowed
Income & Schooling: data poor; 25% NR

24. Cancer sites Tongue: 35.1% Buccal mucosa: 26.3% Alveolar ridge: 21.1%
Palate: 5.3%
Retromolar region: 3.5%
FOM: 1.8%
Uncoded: 7.0%

25. Histopathological staging
Stage 1: 15.8%
Stage 2: 28.1%
Stage 3: 15.8%
Stage 4: 40.4%

26. Few with problems No problem with shoulder: 86.0%
No problem opening mouth: 84.2%
Speech is the same as always: 82.5%
No change in appearance: 78.9%
Taste is unaffected: 78.9%
Continues to enjoy recreational activities: 70.2%
As active as always: 70.2%

27. Pain
Total with pain: 63.2%
Pain but does not require painkillers: 38.6%
Requires painkillers, activities disrupted: 24.6%
Pain in 100% Chinese, 56.2% Indians; 2/3 of Malays, 2/3 Indigenous
Pain in 100% of aged ≤40 years; 60% of ≥41 years

28. Depressed Total depressed: 47.4%
Occasionally depressed but life goes on: 47.4%
Feels very depressed by cancer and feels moody: 0%

29. Chewing Total with problem chewing food: 40.4%
Chews only soft food: 35.1%
Avoids eating solid & soft food, pain & discomfort when chewing: 5.3%

30. Swallowing foods Total with problem swallowing: 36.8%
Swallows some solids: 12.3%
Swallows only liquids: 17.5%
Swallows only liquids & sometimes choke: 1.8%

31. Disruption of daily activities
Total with activities disrupted: 24.5%
Sometimes: 14.0%
Always:10.5%

32. Conclusions
A need for HRQoL instrument relevant for Malaysian patients (short, easily understood, easy to respond)
Infra-structural problems in contacting patients
Main problems: pain, depressed, chewing & swallowing.

33. Thank you Raja Latifah RL, Oral Cancer Research & Coordinating Centre
Faculty of Dentistry
University of Malaya
50603 Kuala Lumpur

34. Prevalence Source* Country Year Prevalence (%) PreC Cancer#
Pen. M’sia /
M’sia /
1 Dental Division, MOH (1977). Dental epid survey of adults
in Pen. M’sia 1974/75
2 Zain RB et al (1995). Oral mucosal lesions survey of adults
in Malaysia. MOH & UM, Malaysia; and Aichigakuin
University, Japan.
# Adults aged  25 years

35. Cross cultural comparison ASIR per 105 per year
Source Time interval Population ASIR NS
T’gganu
Perak
S’wak
Kelantan
<developed (F)
<developed (M)
Mukhriz H et.al (2003)
Ghazali N et al (2001)

36. Cost to patient & society
Impact of Disease itself and treatment
Household expenditure
OH-QOL
Physical limitation
Psychosocial impact
16.2 years of life were lost per person dying of oral cancer. (National Center for Chronic Disease Prevention & Health Promotion, USA)

37. Pain
Total with pain: 63.2%
Pain but does not require painkillers: 38.6%
Requires painkillers, activities disrupted: 24.6%