Background: This review aims to assist cancer clinical researchers in choosing between the two most widely used measures of cancer-specific health-related quality of life: the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and Functional Assessment of Cancer Therapy—General (FACT-G). Materials and methods: Information on QLQ-C30 and FACT-G content, scale structure, accessibility and availability was collated from websites and manuals. A systematic review was undertaken to identify all articles reporting on psychometric properties and information to assist interpretability. Evidence for reliability, validity and responsiveness was rated using a standardised checklist. Instrument properties were compared and contrasted to inform recommendations. Results: Psychometric evidence does not recommend one questionnaire over the other in general. However, there are important differences between the scale structure, social domains and tone that inform choice for any particular study. Conclusions: Where research objectives are concerned with the impact of a specific tumour type, treatment or symptom, choice should be guided by the availability, content, scale structure and psychometric properties of relevant European Organisation for the Research and Treatment of Cancer versus Functional Assessment of Chronic Illness Therapy modules. Because the FACT-G combines symptoms and concerns within each scale, individual items should always be reviewed within the context of specific research objectives. Where these issues are indecisive, researchers are encouraged to use an algorithm at the end of the current article.
Background: The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap. Aim and design: This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families. Data sources: Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers. Results: Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients. Conclusion: This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.
Purpose This review aims to provide a broad overview of the issues and clinical challenges of nonadherence in adolescents and young adults (AYAs) with cancer. Nonadherence can reduce treatment efficacy, which places the patient at higher risk of relapse, adverse effects, and poor outcomes. Design A review of the English-speaking literature between 1980 and 2008 was conducted to identify relevant publications, which were supplemented by reference and author searches. Results Definition and measurement of adherence varies. Most studies have not clearly delineated an AYA age group (ie, 15-25 years) and have been dominated by leukemia and lymphoma samples. Estimates for nonadherence in this population range from 27% to 60%, with openness of family relationships and support found to predict adherence. Strategies to avoid, assess, and manage nonadherence are presented. Conclusion Overall, the evidence base for adherence and strategies to promote it in AYAs with cancer is woefully lacking. There is a need for high-quality studies that target clinically important questions, randomized controlled trials of theoretically based interventions, and development and evaluation of training programs for oncology staff in the special issues faced by AYAs with cancer.
Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia.