Development and Validation of a Dual-Language (English and Malay) Needs Assessment Tool for Breast Cancer (NeAT-BC).

Background: Needs assessment tools may be used to guide the optimisation of cancer survivorship services. We sought to develop and validate a dual-language needs assessment tool for women with breast cancer. Methods: The study comprised two phases; (I) co-design, and (II) psychometric testing. In Phase I, items were generated based on focus group discussions with patients and a literature review. These items were then translated into the Malay language. Content and face validation were undertaken with an expert panel. In phase II, 315 Malaysian women living with breast cancer were recruited. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were conducted to determine construct validity and reliability. Criterion validity was assessed using the EORTC QLQ-C30 questionnaire. Results: We co-designed and validated a 48-item dual-language needs assessment tool for breast cancer (NeAT-BC). Five underlying constructs were revealed in the EFA: (1) emotional support, (2) social and intimate relationships, (3) hospital appointments, (4) personal care and health, and (5) information and services. The NeAT-BC demonstrated good reliability across all constructs (Cronbach's alpha: 0.90 to 0.96). CFA also demonstrated acceptable convergent and divergent validity, composite reliability ≥ 0.87, and Heterotrait−Monotrait index < 0.85 for all constructs. Criterion validity was established given the significant negative correlation between overall needs and quality of life (r = −0.14; p = 0.02). The NeAT-BC took approximately 25 min to be completed and could be interviewer-administered or self-administered. Conclusion: The utilization of the NeAT-BC is expected to guide establishment of evidence-based cancer survivorship services in Malaysia, with wider potentials for adoption in other multi-ethnic and/or low-and-middle income settings.

Validation and reliability of the Bahasa Malaysia language version of the Acceptance of Illness Scale among Malaysian patients with cancer.

Cancer is a life-threatening disease, and the challenges in accepting the diagnosis can bring a devastating emotional impact on the patient's mental and psychological wellbeing. Issues related to illness acceptance among cancer patients are not well studied in Malaysia. To date, the Acceptance of Illness Scale has not been translated to the Malay language (Bahasa Malaysia) nor validated for use in the oncology setting. The objective of the study is to translate, validate and determine the reliability of the Bahasa Malaysia version of the Acceptance of Illness Scale among Malaysian patients with cancer. A total of 129 patients newly diagnosed with cancer were consecutively sampled and the scale was administered via face-to-face interviews. A pilot test (n = 30) was conducted and test-retest reliability was determined. The Bartlett Test of Sphericity was statistically significantly (p<0.001), while the Kaiser-Mayer-Olkin (KMO) measure of sampling adequacy was adequate at 0.84. Scale item mean scores ranged between 3.02 and 4.33, while the item-total correlation ranged between 0.50 to 0.66 (p<0.05). The internal reliability coefficient was 0.84. The test-retest reliability indicated a high correlation, r = 0.94 with p = 0.001. The Bahasa Malaysia version of the Acceptance of Illness Scale is a valid and reliable instrument that is appropriate for use in Malaysian patients with cancer. Use of this scale to assess illness acceptance among the Malay-speaking patients with cancer can act as a guide for delivery of psycho-oncological services to help patients have a better mental wellbeing and life adjustment in living with cancer.

Reliability and Validity of the Brief Illness Perception Questionnaire in Bahasa Malaysia for Patients with Cancer.

OBJECTIVE: The main purpose of this study was to identify the psychometric properties and validate   the Bahasa Malaysia version of the Brief Illness Perception Questionnaire among patients with cancer. METHODS: A total of 129 newly diagnosed patients with cancer were consecutively sampled. Reliability and validity of the questionnaire were tested using translation validity, test-retest reliability, Principal Component Analysis, Cronbach's alpha coefficient for domains and item-total correlation. RESULTS: The questionnaire indicates excellent test-retest reliability. The Principal Component Analysis (PCA) revealed that Kaiser-Meyer-Olkin (KMO) is 0.60 for the two-factor structure of the Brief Illness Perception Questionnaire of the Bahasa Malaysia version which consists of cognitive illness representation and emotional illness representation. CONCLUSION: The Brief Illness Perception Questionnaire in the Bahasa Malaysia version is a useful tool to use among patients with cancer in Malaysia context despite moderate psychometric properties. This is based on the premise that the questionnaire can be used as a quick tool to assess illness perceptions among Malaysian with cancer in routine oncology practice.

Insights on emotional distress following cancer, sources of support and the unmet needs in a setting with limited supportive care services for people living with cancer.

INTRODUCTION: Delivery of supportive cancer care is often deemed a low priority in resource-limited settings. We aimed to explore the sources of emotional distress, the related support and the unmet needs of cancer survivors in Malaysia, where cancer survivorship services are presently limited. METHOD: Twenty focus group discussions were conducted with 102 cancer patients from diverse ethnic and socioeconomic backgrounds. Thematic analyses were performed. RESULTS: Patient narratives suggested that emotional distress arose from direct and indirect stressors. Direct stressors comprised physical and cognitive side effects of cancer surgery and therapies, and fear of recurrence. Indirect stressors included worry over dependent family members, financial distress following cancer, working with cancer and lack of practical support at home. Distress from altered physical appearances, fear of recurrence and lack of practical support were mainly raised by women, implying that men and women may have disproportionate emotional needs. Emotional support largely came from informal sources including self, family, friends and religion. While formal emotional support from professional counsellors and cancer support groups was acknowledged as important, it appeared to be largely lacking. Unmet needs in coping with fear of recurrence, financial distress, workplace discrimination and household chores were particularly highlighted. CONCLUSION: The unmet needs revealed in this study provide insights to initiate actionable changes to improve the emotional wellbeing of people living with cancer in settings where cancer survivorship services are still in its infancy.