ABSTRACT
BACKGROUND: Prior survivorship research has largely focused on issues faced by survivors of childhood tumors, breast cancers, or hematologic malignancies. Relatively little is known about the needs of other prevalent survivor groups. Our aim was to identify the specific concerns of colorectal cancer (CRC) survivors in the key domains of physical functioning, psychological wellbeing, and social relationships. METHODS: We conducted focus groups with stage II and III CRC survivors who had completed their primary active anti-cancer treatments. Patients were asked to describe how their diagnosis and treatment impacted their lives, to outline deficiencies in the care that they received, and to suggest ways of addressing any unmet needs. A content analysis was subsequently conducted to identify major themes. RESULTS: Thirty CRC survivors participated in six focus groups. Individuals reported some degree of dissatisfaction with the amount and type of diagnostic and treatment information they received at their initial clinic visit. Distress from toxicities, such as peripheral neuropathy, was also common among the survivors. Similarly, the majority faced challenges adjusting to their lives and daily activities, especially in caring for their colostomy. Having survived CRC, many survivors expressed an interest in advocacy and health promotion of CRC. CONCLUSIONS: CRC survivors face many barriers after their cancer treatment. Issues with colostomy are unique to this survivor group. Interventions to improve CRC survivorship care should also incorporate opportunities for patient advocacy. Copyright © 2015 John Wiley & Sons, Ltd.
Subject(s)
Cancer Survivors/psychology , Colorectal Neoplasms/pathology , Colorectal Neoplasms/psychology , Focus Groups , Health Services Needs and Demand , Quality of Life/psychology , Adaptation, Psychological , Adult , Aged , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/therapy , Colostomy/psychology , Combined Modality Therapy/psychology , Female , Humans , Male , Middle Aged , Patient Care Team , Patient Satisfaction , Qualitative Research , Social SupportABSTRACT
PURPOSE: The purpose of this paper was to provide a comprehensive, contemporary systematic review of studies that have examined the quality of life (QOL) of survivors of childhood cancer in order to extend upon the findings of earlier reviews. MATERIALS AND METHODS: A review was conducted that used the databases MEDLINE, PubMed, PsycINFO, and CINAHL. Articles were included that were published in English between 2001 and 2008 and used quantitative measures and statistical tests to compare health-related quality of life (HRQL) or QOL of childhood cancer survivors with population norms or matched comparison groups. RESULTS: Thirteen studies were identified. Findings were contradictory across studies, yet by and large, reflected those of past reviews. In general, survivors' scores on subscales representing physical, psychological, and social domains of HRQL/QOL were similar to comparisons, with the greatest differences being in physical well-being. Key personal and environmental factors were negatively correlated with the three domains across studies for survivors including: older age at diagnosis, longer time since diagnosis, certain cancer and treatment types, female gender, and a number of socioeconomic factors. CONCLUSIONS: Lack of comparability across studies remains a problem due to wide variation in study focus and designs. Conceptual and methodological issues include: use of numerous HRQOL and QOL measures, lack of distinction between conceptualization and measurement of HRQL and QOL, lack of initial qualitative input from survivors about QOL, little examination of the influence of environmental factors on QOL, little attention to survivors' satisfaction with life quality, use of small heterogeneous samples, and need for population-based longitudinal studies.