Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study.

BACKGROUND: Patients with hematological cancer who experience relapse or progressive disease often face yet another line of treatment and continued mortality risk that could increase their physical and emotional trauma and worsen their health-related quality of life. Healthcare professionals who use patient-reported outcomes to identify who will have specific sensitivities in particular health-related quality of life domains may be able to individualize and target treatment and supportive care, both features of precision medicine. Here, in a cohort of patients with relapsed or progressive hematological cancer, we sought to identify health-related quality of life domains in which they experienced deterioration after relapse treatment and to investigate health-related quality of life patterns. METHOD: Patients were recruited in connection with a precision medicine study at the Department of Hematology, Aalborg University Hospital. They completed the European Organization for Research and Treatment of Cancer questionnaire and the Hospital Anxiety and Depression Scale at baseline and at 3, 6, 9, and 12 months after the relapse diagnosis or progressive cancer. Modes of completion were electronically or on paper. Clinically relevant changes from baseline to 12 months were interpreted according to Cocks' guidelines. We quantified the number of patients with moderate or severe symptoms and functional problems and the number who experienced improvements or deterioration from baseline to 12 months. RESULTS: A total of 104 patients were included, of whom 90 (87%) completed baseline questionnaires and 50 (56%) completed the 12-month assessments. The three symptoms that patients most often reported as deteriorating were fatigue (18%), insomnia (18%), and diarrhea (18%). The three functions that patients most often reported as deteriorating were role (16%) and emotional (16%) and cognitive (16%) functioning. CONCLUSION: In this study, patient-reported outcome data were useful for identifying negatively affected health-related quality of life domains in patients with relapsed or progressive hematological cancer. We identified patients experiencing deterioration in health-related quality of life during treatment and characterized a potential role for patient-reported outcomes in precision medicine to target treatment and supportive care in this patient group.

Experiences with Recruitment of Marginalized Groups in a Danish Health Promotion Program: A Document Evaluation Study.

BACKGROUND: Studies have found that marginalized groups living in deprived neighborhoods are less likely to participate in health programs compared to the majority of society. This study evaluates recruitment approaches conducted during a national government-funded project in 12 deprived neighborhoods across Denmark between 2010 and 2014. The aim of this study was to understand how recruitment approaches could promote participation in health programs within deprived neighborhoods to reach marginalized groups. METHOD: Documents from all 12 of the included municipalities were collected to conduct a document evaluation. The collected documents consisted of 1,500 pages of written material with 12 project descriptions, three midterm and 10 final evaluations. The collected data were analyzed through a qualitative content analysis. RESULTS: The results are based on the fact that only 10 municipalities have developed evaluations related to recruitment, and only three evaluations provided a description of which marginalized groups were recruited. Challenges related to recruitment consist of difficulties involving the target group, including general distrust, language barriers and a lack of ability to cope with new situations and strangers. Additional geographical challenges emerged, especially in rural areas. Positive experiences with recruitment approaches were mainly related to relationship building and trust building, especially through face-to-face contact and the project employees' presence in the neighborhood. Additionally, adjusting some of the interventions and the recruitment strategy increased participation. CONCLUSION: This study found that relation and trust between the residents and the project employees is an important factor in the recruitment of marginalized groups in deprived neighborhoods as well as adjusting the health interventions or recruitment strategy to the target groups. In future research, it is necessary to examine which recruitment approaches are effective under which circumstances to increase participation among marginalized groups.