The feasibility of using the Patients Concerns Inventory (PCI) to identify oral cancer patient concerns during consultation in oral and maxillofacial specialist clinics in Malaysia was assessed. A cross-sectional study was conducted using a consecutive clinical sampling technique of all new and follow-up oral cancer patients. Surgeons and counter staff were also recruited. Two-thirds of patients were elderly, 63.9% female, 55.6% Indian, 63.9% of lower-level education, and half had the lowest level household income. Patient status was mostly post-treatment (87.5%) and most were at cancer stage III/IV (63.9%); 59.7% had surgery. Patients took an average 5.9 min (95% CI 5.1–6.7 min) to complete the PCI. Physical domain appeared highest (94.4%); social/family relationship issues (4.2%) were lowest. Significant associations included patient age–personal function ( P = 0.02); patient education level–emotional status ( P = 0.05) and social/family relationship issues ( P = 0.04), and patient TNM staging–personal function ( P = 0.03). The patients’ mean feasibility score for the PCI was 5.3 (95% CI 5.1–5.5) out of 6. Patients (93.1%) and surgeons (90%) found the PCI to be feasible. Only 57.1% of counter staff agreed on the use of the PCI during patient registration. Overall, the PCI was considered feasible, thus favouring its future use in routine oral cancer patient management.
Oral cancer is the sixth most common cancer in the world and occurs more among males and in the developing countries. According to the World Health Organization (WHO), India contributes to most of the oral cancer incidence, with an age-standardized rate per 100 000 population of 12.6. In Malaysia, the oral cancer incidence is extremely low, and the Ministry of Health (MOH) reported the prevalence in Malaysia to be only 0.04% in the year 2002. However, a unique feature of oral cancer prevalence in Malaysia is its high occurrence among two minority ethnic groups, namely Indians and the indigenous people of Sabah and Sarawak, who constitute 8% and 4% of the population, respectively.
The effect of oral cancer on patients depends on the stage of disease, site of cancer, and treatment-related issues. Many aspects of patients’ lives are affected by the disease, namely their physical, functional, social and emotional well-being, as well as their financial status. In routine clinical practice, the measurement of a patient’s individual health-related quality of life (HRQOL) can be used to identify patient problems and the monitoring of their disease and treatment over time. These measurements are usually done using questionnaires, which are now used in the clinical arena as an attempt to generate treatment outcomes. However in Malaysia, the application of HRQOL assessments for oral cancer patients is relatively new and most efforts are currently limited to research purposes only.
The development of the Patients Concerns Inventory (PCI) by Rogers and colleagues in 2009 was intended to help head and neck cancer patients to identify the issues that they wanted to discuss during routine follow-up consultations. A list of 45 items in the PCI was generated through the synthesis of issues covered in HRQOL questionnaires and discussions with various multidisciplinary teams. The PCI was developed in partnership with patients and carers and has been successfully trialled for use specifically among head and neck cancer patients in the UK. The previous literature has shown that the PCI helped to identify patient concerns regarding appearance and mood and anxiety issues, as well as fear of recurrence. However, since the PCI is very new in routine clinical practice, there is little evidence of the extent of its use in other countries besides the UK, or in other medical disciplines.
Thus, this study aimed to explore the feasibility of the use of the PCI in a clinical setting in Malaysia from the patient, surgeon, and counter staff point of view. The rationale for this study was to elicit oral cancer patient concerns and needs in order to understand the disease from their perspective, to elicit surgeon opinion about the usefulness of the PCI during clinical consultation, and to assess counter staff perception of its administration during the patient registration process.
Materials and method
This was a cross-sectional study using a consecutive clinical sampling technique. All new and follow-up patients who were diagnosed with oral cancer and attended oral and maxillofacial (OMF) specialist clinics in selected areas of peninsular Malaysia, Sabah, and Sarawak from April 2011 to July 2011 were recruited. The sampling frame consisted of seven hospitals, mostly tertiary regional referral centres for oral cancer patients, located in capital cities. Of these, two are teaching hospitals (Dental Faculty at the University Malaya Medical Centre and Universiti Sains Malaysia Hospital), while the rest are under the care of the MOH Malaysia. Non-Malaysian citizens and patients with a mental illness (based on their medical records) were excluded from this sample.
The original PCI developed by Rogers and colleagues in 2009 consisted of 45 items. However, in the present study, the PCI was adapted in a few aspects after: (1) discussions with the PCI developer, (2) face- and content-validation for the Malaysian population by a public health specialist and an OMF specialist, and (3) referring to some of the domain categories used in the FACT-H&N (v 4.0). The adapted PCI (43 items) included the following changes: (1) the merging of ‘sex’ and ‘intimacy’, and of ‘energy levels’ and ‘fatigue’, as single issues; (2) the addition of two new items, ‘health supplements’ and ‘diet restrictions’; (3) the removal of two items, ‘mood’ and ‘temperament and personality’; (4) a check-box format for all items; and (5) categorization of items into seven main domains, namely physical status, emotional status, personal function, social/family relationships, economic status, diet-related function, and others ( Fig. 1 ). The PCI allows patients to choose one or more issues of concern that they wish to discuss with the doctor during consultation. To measure the usefulness of the PCI, face-to-face interviews with the patients were conducted after the doctor–patient consultation session using a Feasibility Feedback Questionnaire (FFQ, category A). This FFQ consisted of six semi-structured open-ended questions regarding the patient’s assessment of the PCI as a tool to identify their concerns more effectively during consultations, with a ‘yes’ and ‘no’ response. The positive and negative feedback with regard to the use of the PCI (from the FFQ) was measured by frequency distribution for each question. Subsequently, after describing the frequency of FFQ responses, the patient feasibility scoring was done based on a scoring algorithm as follows: all positive responses were given a score of 1, whereas all negative responses including ‘don’t know/others’ were scored 0. A total score of between 3 and 4 was used as a cut-off point to differentiate between PCI feasibility (a score of 4–6) and non-feasibility (a score of 0–3). With surgeons, the questionnaire (FFQ, category B) was used to obtain their feedback regarding the usefulness of the PCI in assisting them with more focused consultations. The questionnaire for counter staff (FFQ, category C) was used to document their perceptions of whether it was feasible to administer the PCI during patient registration. All three FFQs (categories A–C) were face-validated by a dental public health specialist and an oral maxillofacial specialist (actively managing oral cancer patients) for their (1) content against the intended objectives of the study and (2) comprehensibility of terminology used.