Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review

Background Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life. Methods A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1–17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized. Results Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies. Conclusions Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL

Where is the patient in models of patient-centred care: a grounded theory study of total joint replacement patients

BACKGROUND: Patient-centered care ideally considers patient preferences, values and needs. However, it is unclear if policies such as wait time strategies for hip and knee replacement surgery (TJR) are patient-centred as they focus on an isolated episode of care. This paper describes the accounts of people scheduled to undergo TJR, focusing on their experience of (OA) as a chronic disease that has considerable impact on their everyday lives. METHODS: Semi-structured qualitative interviews were conducted with participants scheduled to undergo TJR who were recruited from the practices of two orthopaedic surgeons. We first used maximum variation and then theoretical sampling based on age, sex and joint replaced. 33 participants (age 38-79 years; 17 female) were included in the analysis. 20 were scheduled for hip replacement and 13 for knee replacement. A constructivist approach to grounded theory guided sampling, data collection and analysis. RESULTS: While a specific hip or knee was the target for surgery, individuals experienced multiple-joint symptoms and comorbidities. Management of their health and daily lives was impacted by these combined experiences. Over time, they struggled to manage symptoms with varying degrees of access to and acceptance of pain medication, which was a source of constant concern. This was a multi-faceted issue with physicians reluctant to prescribe and many patients reluctant to take prescription pain medications due to their side effects. CONCLUSIONS: For patients, TJR surgery is an acute intervention in the experience of chronic disease, OA and other comorbidities. While policy has focused on wait time as patient/surgeon decision for surgery to surgery date, the patient’s experience does not begin or end with surgery as they struggle to manage their pain. Our findings suggest that further work is needed to align the medical treatment of OA with the current policy emphasis on patient-centeredness. Patient-centred care may require a paradigm shift that is not always evident in current policy and strategies