Methodological studies

Older cancer patients and item non-response in a quality of life questionnaire

Mikaela Jorgensen, Jane Young, Michael Solomon

Cancer is a disease of ageing yet issues around quality of life (QOL) measurement in older patients are not well understood. This study aimed to determine whether increasing age was associated with item non-response in the Functional Assessment of Cancer Therapy – Colorectal (FACT-C) and whether methods commonly used to manage missing data produced unbiased QOL estimates. Control groups from pilot phases of an ongoing randomised trial completed the FACT-C at baseline, one and three months following hospital discharge (n=57). Those missing two or more FACT-C items were significantly older than those with none or one item missing at one month. Non-responders were significantly older than responders for the items “sex life”, “diarrhoea”, and “body appearance”. QOL in the social/family domain was overestimated when simple mean imputation was used for the “sex life” item. Older age appears to be a risk factor for item non-response in QOL questionnaires. Further exploration of reasons for missing items in older patients is needed. Transparency of reporting and checking of missing data patterns and imputation methods is required to ensure the validity of research conclusions.

Status: Manuscript in preparation


Needs in health care: what beast is that?

James Harrison, Jane Young, Phyllis Butow, Michael Solomon

Need is a pivotal concept within health systems internationally given its driving force in health care policy, development and delivery at a population health and individual level. Needs assessments are critical activities undertaken to ensure that health services continue to be needed and to identify new target populations that demonstrate unmet need.

The concept of need is underpinned by varied theoretical definitions originating from various disciplines. However, when needs are assessed, or health interventions developed based on need, little, if any, detail of the theoretical or conceptual basis to what is being measured is ever articulated. This is potentially problematic and may lead to measurement being invalid and planned health services being ineffective in meeting needs. Seldom are theoretical definitions of need ever compared and contrasted.

This critical review is intended to fill this gap in the literature. Interpretations of the concept of need drawing from areas such as psychology, social policy and health, are introduced. The concept and relevance of unmet need for health services is discussed. It is intended that these definitions can be used to operationalise the term “need” in practice, theoretically drive needs assessment and help guide health care decisions that are based upon need.

Status: In press - International Journal of Health Services


Exploring the issue of missing items in Quality of Life analysis

Laura Rodwell, Jane Young

Missing questionnaire data in longitudinal studies can arise from participant loss to follow up or missed items within returned questionnaires. The scoring algorithm for the Functional Assessment of Cancer Therapy-Colorectal (FACT-C), a cancer-specific quality of life instrument uses a simple mean imputation approach, which specifies that subscale scores can be prorated providing more than 50% of items have been answered within that scale. The overall FACT-C score can be calculated only when the overall item response is greater than 80% and all subscales have scores.

In a randomised trial of patients with colorectal cancer, the FACT-C was administered at baseline, 1, 3 and 6 months after hospital discharge. This study uses a previously developed checklist to systematically address the question of whether it is appropriate to use the method of simple mean imputation to account for missing data due to item non-response in the context of this study.

Status: Manuscript in preparation