Establishing the thematic framework for a diabetes-specific health-related quality of life item bank for use in an english-speaking asian population

• Published in: PloS one Vol. 9; no. 12; p. e115654
• Main Authors: Koh, Odelia, Lee, Jeannette, Tan, Maudrene L S, Tai, E-Shyong, Foo, Ce Jin, Chong, Kok Joon, Goh, Su-Yen, Bee, Yong Mong, Thumboo, Julian, Cheung, Yin-Bun, Singh, Avjeet, Wee, Hwee-Lin
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 22.12.2014; Public Library of Science (PLoS)
• Subjects: Adaptation; Adult; Aged; Anxiety; Asian Continental Ancestry Group - statistics & numerical data; Banking industry; Banks; Clinical medicine; Coding; Diabetes; Diabetes mellitus; Diabetes Mellitus, Type 2 - epidemiology; Diabetes Mellitus, Type 2 - prevention & control; Diabetic retinopathy; Emotions; Endocrinology; Female; Focus groups; Frustration; Hospitals; Humans; Immunology; Information systems; Male; Medicine; Medicine and Health Sciences; Middle Aged; Patient Outcome Assessment; Patients; Pharmacy; Public health; Qualitative research; Quality of Life; Questionnaires; Rehabilitation; Religion; Research and Analysis Methods; Review boards; Rheumatology; Self Report; Singapore - epidemiology; Social interactions; Studies; Surveys and Questionnaires; Young Adult; Singapore
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0115654

To establish a thematic framework for a Diabetes Mellitus (DM)-specific health-related quality of life (HRQoL) item bank by identifying important HRQoL themes and content gaps in existing DM-specific HRQoL measures and determining whether Patient-Reported Outcomes Measurement Information System (PROMIS) item banks are useful as a starting point. English-speaking Type 2 DM patients were recruited from an outpatient specialist clinic in Singapore. Thematic analysis was performed through open coding and axial coding. Items from four existing DM-specific measures and PROMIS Version 1.0 and 2.0 item banks were compared with identified themes and sub-themes. 42 patients participated (25 men and 17 women; 28 Chinese, 4 Malay, 8 Indians, 2 other ethnicities). Median age was 53.70 years (IQR45.82-56.97) and the median disease duration was 11.13 (SD9.77) years. 10 subthemes (neutral emotions, coping emotions, empowered to help others, support from family, spend more time with family, relationships, financial burden on family, improved relationship, social support and religion/spirituality) were not covered by existing DM-specific measures. PROMIS covered 5 of 6 themes, 15 of 30 subthemes and 19 of 35 codes identified. Emotional distress (frustration, fear and anxiety) was most frequently mentioned (200 times). We had developed a thematic framework for assessing DM-specific HRQoL in a multi-ethnic Asian population, identified new items that needed to be written and confirmed that PROMIS was a useful starting point. We hope that better understanding and measurement of HRQoL of Asian DM patients will translate to better quality of care for them.