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 rlatifah@um.edu.my

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

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

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

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

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”

11 Domains + 1 Impact

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?

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…………)

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

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

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

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

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 56.74 ±11.84 years; 30-79 yrs 56.1% married; 43.9 single/divorced/widowed Income & Schooling: data poor; 25% NR

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%

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

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%

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

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

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%

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%

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

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.

Thank you Raja Latifah RL, Oral Cancer Research & Coordinating Centre Faculty of Dentistry University of Malaya 50603 Kuala Lumpur rlatifah@um.edu.my

Prevalence Source* Country Year Prevalence (%) PreC Cancer# 1 Pen. M’sia 1974/5 1.3 0.02 2 M’sia 1993/4 1.5 0.04 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

Cross cultural comparison ASIR per 105 per year Source Time interval Population ASIR 1 94-98 NS 2.34 1 94-98 T’gganu 0.87 1 94-98 Perak 0.93 1 94-98 S’wak 1.02 2 94-98 Kelantan 1.10 3 2000 <developed (F) 3.72 3 2000 <developed (M) 5.98 Mukhriz H et.al (2003) Ghazali N et al (2001) http://www.whocollab.od.mah.se/expl/worldorcincm.html

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)

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