Below average cognitive performance is common in this patient group. In addition, a subgroup shows reliable cognitive decline after allogeneic HSCT. Healthcare professionals should be aware of these treatment-related cognitive side effects.
For consistent quality of treatment of young people with chronic health care needs, a structured health care transition (HCT) from pediatric medicine to adult medical care is essential. Currently, most countries have no guidelines on HCT based on systematic evidence research. To close this gap, guidance to support HCT was developed in Germany. Twenty-two experts in the management of adolescents and young adults with different chronic conditions and three patient representatives were invited to take part in the guideline group. Based on a systematic literature search recommendations for HCT were drafted. Where evidence was lacking, recommendations were developed using collective expert consensus. The consensus process was independently moderated using a Delphi approach. The final draft was reviewed and endorsed by all major German medical societies. The clinical recommendations provide guidance for all chronic somatic diseases. After assessment of HCT readiness, an individualized plan for HCT should be drawn up. Key elements here are a responsible coordinator, age-adapted patient education, involvement of caregivers, web-based interventions, joint visits, and a structured summary for the receiving physician. The aim is the gradual transfer of responsibility for disease management to the young person themselves. Conclusion: As only a few randomized controlled studies on HCT are available, evidence-based statements are possible for some but not all areas of HCT. However, this guideline may help to develop globally accepted standards. These standards should be established and implemented. The aim should be a reimbursement by individual national health systems to allow appropriate support for young people. What is Known:• Health care transition from pediatric to adult care is primarily organized in local settings, partly based on disease-specific guidelines.•There have been no national guidelines in Germany until now. What is New:• Here we present the general evidence-based guidelines of the German Association of Scientific Medical Societies for health care transition.• These might serve as a blueprint for further national or international health care transition guidelines.
BackgroundMany patients with cancer suffer from distress, anxiety and depression. However, studies on patients with brain metastases are lacking. In this exploratory study we prospectively assessed distress, anxiety and depression in patients with brain metastases from different solid primary tumour treated with radiotherapy to the brain.MethodsPatients were recruited between May 2008 and December 2010. Distress, anxiety and depression were subjectively evaluated before radiotherapy, 6 weeks, 3 months and 6 months after radiotherapy using the validated National Comprehensive Cancer Network Distress Thermometer (DT) and the Hospital Anxiety and Depression Scale (HADS). The treatment group consisted of adult patients (n = 67) with brain metastases who were treated with whole-brain radiotherapy (n = 40) or hypofractionated stereotactic radiotherapy (n = 27). The control group comprised of patients (n = 32) diagnosed with breast cancer without cranial involvement who received adjuvant whole breast radiotherapy. Forty-six patients (24 in the treatment group) completed the study after six months.ResultsBefore radiotherapy, the treatment group experienced higher distress than the control group (p = 0.029). Using a cut-off ≥5, 70% of the treatment group were suffering from significant distress (66% of the control group). No significant time-by-group interaction on distress, anxiety and depression was observed. At all time points, a high proportion of patients reported psychological stress which featured more prominently than most of the somatic problems. Global distress correlated strongly with the Hospital Anxiety score before radiotherapy, but only moderately or weakly with both HADS scores after radiotherapy with the weakest association 6 months after radiotherapy.ConclusionIn conclusion, the course of distress, anxiety and depression does not differ significantly between patients with brain metastases and breast cancer patients without cranial involvement. This finding suggests that both groups need similar psychological support during their treatment. Both screening instruments should be used as they cover different facets of distress.
The current study aims to examine the construct of empowerment in the context of a transition education program. Patient education programs strive to empower adolescents with chronic conditions to take responsibility for their own health care to manage their transition from pediatric to adult medicine. Our study aimed to identify the core components of patient empowerment and examined whether its components are responsive to a patient education program. Methods Data was collected in two longitudinal studies involving N = 723 adolescents with chronic conditions. We used Latent Difference Score models (LDSm) of: 1) self-efficacy (GSE), 2) transition competence (TCS), and 3) patient activation (PAM) to quantify the latent variable of patient empowerment (PE). Additionally, the LDSm were extended to analyze the effects of group affiliation (intervention vs. control) and participants' age on empowerment. Results PE was identifiable by the three components. The intervention group developed significantly higher scores of PE compared to the control group. Age (13-21 years) did not moderate the relation between group affiliation and PE.
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