Discussing factors associated with quality of life in cancer follow-up appointments: a preliminary test of a pragmatic model for clinical practice

Objective: The aim of this study is to perform a preliminary test of a practical, evidence-based model to enable discussions around quality of life–related concerns during cancer follow-up appointments. Design: Cross-sectional study measuring quality of life, illness perceptions, emotional distress, fatigue, and subjective cognitive complaints. Setting: Cancer outpatient follow-up clinics in four National Health Services in the United Kingdom. Participants: Working-age post-treatment cancer patients, treated with curative intent. Interventions: Not applicable. Main measures: European Organisation for the Research and Treatment of Cancer – Quality of Life Questionnaire – Core 30, Illness Perceptions Questionnaire – Revised, Hospital Anxiety and Depression Scale, Chalder Fatigue Scale, and Cognitive Failures Questionnaire. Results: Fifty-seven cancer patients, with a mean age of 36 years and on average 2.75 years post treatment, returned the completed questionnaires. Anxiety partially mediated the association between subjective cognitive complaints and illness identity (60%) and timeline (25%). Cognitive complaints mediated the relationships between quality of life and anxiety (45%), depression (30%), and fatigue (62%). Depression mediated the relationships between quality of life and illness identity (48%) and timeline (40%). Conclusion: Our study provides a preliminary test of an evidence-based model to help elicit quality of life–related concerns during cancer follow-up appointments. Illness perceptions are associated with quality of life through the mediation of other cancer-relevant factors. Discussing the type, origin, and expected duration of symptoms may elicit other concerns, such as emotional distress, fatigue, or cognitive complaints, which explained a significant amount of the relationship between illness perceptions and quality of life

Differences in health, participation and life satisfaction outcomes in adults following paediatric- versus adult-sustained spinal cord injury

Study design: Cross-sectional. Objectives: To compare differences in self-reported health status, participation and life satisfaction outcomes between adults with a spinal cord injury (SCI) sustained during paediatric (P) versus adulthood (A) years. Setting: Ontario, Canada. Methods: Secondary analysis of data from the Study of Health and Activity in People with SCI (SHAPE-SCI). Eighty-seven participants who sustained an SCI prior to age 19 (M +/- s.d. = 24.1 +/- 14.0 years postinjury (YPI)) were matched for lesion level (C2-L5), severity (complete/incomplete), gender, age, education and ethnicity with 87 participants who sustained an SCI at >= age 19 years (M-YPI = 12.8 +/- 10.0). Results: Those with a paediatric SCI reported significantly less pain, fewer visits to the physician in the past year, greater functional independence, social participation, occupational participation and minutes per day of moderate-to-heavy physical activity than those who sustained an SCI in adulthood. No significant differences were found for the measures of depression, perceived health status or life satisfaction (P>0.05). With the exception of moderate-to-heavy physical activity and visits to the physician in the past year, between-group differences were independent of YPI. Conclusions: Regardless of time since injury, people who sustained a paediatric SCI reported better health and greater participation than those injured in adulthood. Nevertheless, both groups scored well below able-bodied normative values for all measures. The results highlight the importance of a comprehensive life-course approach to SCI rehabilitation, irrespective of age at the time of injury

Parents' actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review

Contains fulltext : 108967.pdf (publisher's version ) (Open Access)ABSTRACT: BACKGROUND: Pediatric rehabilitation considers Family-centered service (FCS) as a way to increase participation of children with a physical disability in daily life. An important principal is that parents greatly contribute to their child's participation at school, at home, and in the community. However, it is unclear what kind of information is available from literature about what parents actually do to support their child's participation and what problems and needs they experience? Hence, the aim of this study was to provide an overview of the actions, challenges, and needs of parents in enabling participation of their child with a physical disability that is neurological and non-progressive in nature. METHODS: Scoping review with extensive literature search (September 2011) and a thematic analysis to synthesize findings. RESULTS: Fourteen relevant articles revealed two major themes: 'parents enable and support performance of meaningful activities' and 'parents enable, change and use the environment'. Each theme holds a number of actions (e.g. choosing the right type of meaningful activities for facilitating social contacts) and challenges (e.g. negative attitudes of other people). Less information is available about the needs of parents. CONCLUSIONS: This study indicates that parents apply a broad range of strategies to support participation of their children. They experience many challenges, especially as a result of constraints in the social and physical environments. However, this review also shows that little is known about needs of parents in facilitating participation. As Family-centered service (FCS) philosophy is all about the needs of the child and the family, it is essential to further investigate the needs of the parents and to understand if and to what extent they wish to be supported in enabling their child's participation in daily life