scholarly journals “This Graft-vs.-Host Disease Determines My Life. That's It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany

2021 ◽  
Vol 9 ◽  
Author(s):  
Mira Parisek ◽  
Julika Loss ◽  
Ernst Holler ◽  
Anna Barata ◽  
Daniela Weber ◽  
...  
Keyword(s):  
Response Rate ◽  
Survivorship Care ◽  
Long Term Effects ◽  
Framework Analysis ◽  
Consent Rate ◽  
Post Discharge ◽  
Hematopoietic Stem ◽  
Long Term Treatment ◽  
The Impact

Background: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is the only curative treatment modality for many patients affected by hematologic malignancies. However, it can cause debilitating long-term effects. Understanding the impact of alloHSCT on all aspects of the patients' life is required for optimal survivorship management.Aim: To explore in-depth HSCT-survivors' experiences and needs post-transplant. Partners were included to provide further information on survivors' needs and how care could be improved in this area.Methods: We conducted semi-structured face-to-face and phone interviews with alloHSCT-survivors and their partners referred to a survivorship clinic in Germany. Theoretical sampling was used to recruit participants. Data were analyzed using framework analysis.Results: Thirty-two survivors (consent rate: 100%, response rate: 100%) and eighteen partners (consent rate: 84%, response rate: 72%) participated. Survivors were aged between 25 and 68 years (Median: 48, IQR: 25.3) and partners were aged between 26 and 64 years (Median: 54, IQR: 16, SD: 12.8). The themes emerging from the data involved survivors' needs included (i) the diversity of long-term treatment side-effects; and (ii) time post discharge as a dynamic process with individual peaks of burden. Survivors and their partners also suggested strategies for mitigating these unmet needs, i.e., (iii) transparent communication and patient empowerment; and (iv) improvement in continuity of care system and help with claiming social benefits as cornerstones of optimal survivorship care.Conclusion: To our knowledge, this is one of the first qualitative studies focused on the views of German alloHSCT-survivors on the long-term effects of alloHSCT and the first study integrating the view of their partners. Healthcare providers could better support survivors with managing their symptoms and adhering to their prescribed care by ensuring comprehensive, transparent communication that helps increase survivors' understanding and involvement in their care. Further efforts should be made to provide patient-centered, continuous survivorship care that involves additional support with navigating the healthcare and social service system. Intervention studies are required to test the effectiveness of the suggested strategies.

Impact of Dose Adjustments on Serum Ferritin (SF) Levels during Long-Term Treatment with Once-Daily, Oral Deferasirox (Exjade®, ICL670).

Blood ◽  
2007 ◽  
Vol 110 (11) ◽  
pp. 2778-2778 ◽  
Author(s):  
John B. Porter ◽  
Alan R. Cohen ◽  
John M. Ford ◽  
Maria Domenica Cappellini
Keyword(s):  
Serum Ferritin ◽  
Iron Concentration ◽  
Iron Intake ◽  
Long Term Effects ◽  
Subsequent Dose ◽  
Body Iron ◽  
Number Of Patients ◽  
Long Term Treatment ◽  
The Impact

Abstract Background: In deferasirox 1-yr core trials, doses were initially assigned according to baseline liver iron concentration. However, these trials demonstrated that transfusional iron intake has a profound impact on the outcome of chelation therapy and should therefore be considered when assigning deferasirox dose. A large number of patients (pts) were initially assigned 5 and 10 mg/kg/d doses, which were insufficient to balance iron intake from ongoing transfusions. Generally, deferasirox 20/30 mg/kg/d effectively maintained/reduced body iron. This analysis from the 4-yr extension trials evaluates the impact on serum ferritin (SF) of subsequent dose increases in pts who initially received 5/10 mg/kg/d, and the long-term effects of 20 and 30 mg/kg/d doses. Methods: Data for this analysis were pooled from 4 extension trials (106–109E). In the extensions, deferasirox doses were modified based on efficacy and safety markers, including iron burden and transfusional iron intake. SF was measured monthly. Results: In total, 227 pts initially received deferasirox 5 or 10 mg/kg/d, while 182 and 243 received 20 and 30 mg/kg/d, respectively. Underlying diseases included β-thalassemia (n=421), sickle cell disease (n=132), MDS (n=47) and other anemias (n=52). To date, pts have been receiving treatment for a median 3.4 (range: 0–4.5) yrs. Overall, median SF was maintained in the 20 mg/kg/d cohort (Table). In the 30 mg/kg/d cohort, SF levels decreased overall from baseline to month 42 (3734 ng/mL to 2025 ng/mL). However, levels plateaued at around 24 mos in this cohort, reflecting a decrease in mean dose to around 25 mg/kg/d. Median baseline SF in the 5/10 mg/kg/d dose group was 2051 ng/mL, which steadily increased during the first 18 mos of treatment. Subsequent dose increases during the extension phase generally resulted in decreased SF levels, which returned to baseline and below during the remainder of the study. Conclusions: In regularly transfused pts who initially received deferasirox 5/10 mg/kg/d in the core 1-yr clinical trials, SF steadily decreased below baseline once doses were increased to an appropriate level in the extensions. This highlights the importance of ensuring that pts receive the correct deferasirox dose to achieve the goal of therapy, based on iron burden and transfusional iron intake. If a pt is not achieving their therapeutic goal based on SF trends, deferasirox dose should be increased in steps of 5 or 10 mg/kg/d. This analysis confirms that deferasirox 30 mg/kg/d effectively reduces body iron, whereas doses of 20–25 mg/kg/d are generally effective in maintaining iron levels. Median change from baseline in SF (ng/mL) during deferasirox treatment of up to 3.4 years Initial dose, mg/kg/d 5/10 (n=227*) 20 (n=182*) 30 (n=243*) Month Mean dose ± SD† Change in SF (ng/mL) Mean dose ± SD† Change in SF (ng/mL) Mean dose ± SD† Change in SF (ng/mL) *Baseline; †At time point Baseline 2051 2375 3734 1 9.4 ± 1.7 90 19.5 ± 2.6 30 29.2 ± 4.3 −212 6 10.3 ± 3.9 399 18.9 ± 3.5 −15 28.2 ± 5.7 −532 12 13.0 ± 5.4 613 19.0 ± 4.0 −118 26.8 ± 6.6 −716 18 18.5 ± 6.7 831 18.2 ± 7.7 174 23.1 ± 8.6 −676 24 21.7 ± 6.6 635 21.5 ± 6.5 −125 24.5 ± 7.6 −901 30 22.6 ± 7.0 317 22.0 ± 8.5 −205 24.4 ± 8.0 −959 36 21.1 ± 8.7 −211 22.8 ± 7.7 −159 24.3 ± 8.5 −1002 42 21.8 ± 9.3 −65 23.2 ± 8.2 −204 25.8 ± 9.8 −955 EOS 1345 1667 2025

SUMBER-SUMBER RESILIENSI PADA REMAJA AKHIR YANG MENGALAMI KEKERASAN DARI ORANGTUA PADA MASA KANAK-KANAK

Psibernetika ◽  
2018 ◽  
Vol 11 (1) ◽  
Author(s):  
Devina Calista ◽  
Garvin Garvin
Keyword(s):  
Late Adolescents ◽  
Long Term Effects ◽  
Short Term ◽  
Parental Affection ◽  
Resilience Factors ◽  
Childhood Violence ◽  
Past Experiences ◽  
The Impact ◽  
Depth Interviews

<p><em>Child abuse by parents is common in households. The impact of violence on children will bring short-term effects and long-term effects that can be attributed to their various emotional, behavioral and social problems in the future; especially in late adolescence that will enter adulthood. Resilience factors increase the likelihood that adolescents who are victims of childhood violence recover from their past experiences</em><em>,</em><em> become more powerful individuals and have a better life. The purpose of this study was to determine the source of resilience in late adolescents who experienced violence from parents in their childhood. This research uses qualitative research methods with in-depth interviews as a method of data collection. The result shows that the three research participants have the aspects of "I Have", "I Am", and "I Can"; a participant has "I Can" aspects as a source of resilience, and one other subject has no source of resilience. The study concluded that parental affection and acceptance of the past experience have role to the three sources of resilience (I Have, I Am, and I Can)</em></p><p><em> </em></p><p><strong><em>Keyword : </em></strong><em>Resilience, adolescence, violence, parents</em></p>

The Quantification of Structural Reforms in OECD Countries

2018 ◽  
Author(s):  
Balázs Égert ◽  
Peter Gal
Keyword(s):  
Product Market ◽  
Physical Capital ◽  
Oecd Countries ◽  
Market Regulation ◽  
Structural Reforms ◽  
Long Term Effects ◽  
Per Capita ◽  
Product Market Regulation ◽  
The Impact

This chapter describes and discusses a new supply-side framework that quantifies the impact of structural reforms on per capita income in OECD countries. It presents the overall macroeconomic impacts of reforms by aggregating over the effects on physical capital, employment, and productivity through a production function. On the basis of reforms defined as observed changes in policies, the chapter finds that product market regulation has the largest overall single policy impact five years after the reforms. But the combined impact of all labour market policies is considerably larger than that of product market regulation. The paper also shows that policy impacts can differ at different horizons. The overall long-term effects on GDP per capita of policies transiting through capital deepening can be considerably larger than the five- to ten-year impacts. By contrast, the long-term impact of policies coming only via the employment rate channel materializes at a shorter horizon.

scholarly journals Antibiotics at birth and later antibiotic courses: effects on gut microbiota

2021 ◽  
Author(s):  
Sofia Ainonen ◽  
Mysore V Tejesvi ◽  
Md. Rayhan Mahmud ◽  
Niko Paalanne ◽  
Tytti Pokka ◽  
...  
Keyword(s):  
Gut Microbiota ◽  
Control Group ◽  
List Type ◽  
Antibiotic Exposure ◽  
Microbiota Composition ◽  
Long Term Effects ◽  
The Impact ◽  
Antibiotic Courses ◽  
Gut Microbiota Composition

Abstract Background Intrapartum antibiotic prophylaxis (IAP) is widely used, but the evidence of the long-term effects on the gut microbiota and subsequent health of children is limited. Here, we compared the impacts of perinatal antibiotic exposure and later courses of antibiotic courses on gut microbiota. Methods This was a prospective, controlled cohort study among 100 vaginally delivered infants with different perinatal antibiotic exposures: control (27), IAP (27), postnatal antibiotics (24), and IAP and postnatal antibiotics (22). At 1 year of age, we performed next-generation sequencing of the bacterial 16S ribosomal RNA gene of fecal samples. Results Exposure to the perinatal antibiotics had a clear impact on the gut microbiota. The abundance of the Bacteroidetes phylum was significantly higher in the control group, whereas the relative abundance of Escherichia coli was significantly lower in the control group. The impact of the perinatal antibiotics on the gut microbiota composition was greater than exposure to later courses of antibiotics (28% of participants). Conclusions Perinatal antibiotic exposure had a marked impact on the gut microbiota at the age of 1 year. The timing of the antibiotic exposure appears to be the critical factor for the changes observed in the gut microbiota. Impact Infants are commonly exposed to IAP and postnatal antibiotics, and later to courses of antibiotics during the first year of life. Perinatal antibiotics have been associated with an altered gut microbiota during the first months of life, whereas the evidence regarding the long-term impact is more limited. Perinatal antibiotic exposure had a marked impact on the infant’s gut microbiota at 1 year of age. Impact of the perinatal antibiotics on the gut microbiota composition was greater than that of the later courses of antibiotics at the age of 1 year.

Parental alienation: the impact on men’s mental health

2015 ◽  
Vol 29 (3) ◽  
Author(s):  
Leo Sher
Keyword(s):  
Mental Health ◽  
Separation Anxiety ◽  
Self Esteem ◽  
Long Term Effects ◽  
Parental Alienation ◽  
Adult Men ◽  
Self Confidence ◽  
High Conflict ◽  
The Impact

Abstract Parental alienation is defined as a mental state in which a child, usually one whose parents are engaged in a high-conflict separation or divorce, allies himself strongly with one parent (the preferred parent) and rejects a relationship with the other parent (the alienated parent) without legitimate justification. Parental alienation may affect men’s mental health: a) parental alienation negatively influences mental health of male children and adolescents who are victims of parental alienation. Alienated children/adolescents display guilt, sadness, and depressed mood; low self-esteem and lack of self-confidence; distress and frustration; lack of impulse control, substance abuse and delinquent behavior; separation anxiety, fears and phobias; hypochondria and increased tendency to develop psychosomatic illness; suicidal ideation and suicide attempt; sleep and eating disorders; educational problems; enuresis and encopresis; b) parental alienation negatively affects the mental health of adult men who were victims of parental alienation when they were children and/or adolescents. Long-term effects of parental alienation include low self-esteem, depression, drug/alcohol abuse, lack of trust, alienation from own children, divorce, problems with identity and not having a sense of belonging or roots, choosing not to have children to avoid being rejected by them, low achievement, anger and bitterness over the time lost with the alienated parent; c) parental alienation negatively influences mental health of men who are alienated from their children. Fathers who have lost some or all contact with their children for months or years following separation or divorce may be depressed and suicidal.

Sustained drug delivery optimizes long-term treatment of patients with schizophrenia

2004 ◽  
Vol 16 (6) ◽  
pp. 319-325 ◽  
Author(s):  
Pierre S. Chue ◽  
Peter D'Hoore ◽  
J. Michael Ramstack
Keyword(s):  
Antipsychotic Agents ◽  
Term Treatment ◽  
Treatment Programs ◽  
Sustained Drug Delivery ◽  
Partial Compliance ◽  
Long Term Treatment ◽  
Optimal Maintenance ◽  
Long Acting ◽  
The Impact

Chronic disorders such as schizophrenia require long-term treatment programs in order to maintain patients at the lowest level of symptomatology, reduce the likelihood of psychotic relapse, and support achievement of remission and recovery. Evidence suggests that treatment with long-acting injectable antipsychotics reduces the impact of partial compliance and provides predictable release of medication, assuring continuous therapeutic coverage. Until recently, only conventional antipsychotic agents were available in long-acting formulations, thereby foregoing the advantages of the atypical class. Atypical agents which are given orally have been shown to provide long-term efficacy and tolerability benefits compared with conventional agents, but are limited by the need for daily administration. The most recent pharmacological strategy to achieve optimal maintenance treatment has been to combine the benefits of an atypical antipsychotic with delivery in a water-based long-acting formulation. The first antipsychotic to achieve this combination – long-acting risperidone – may thus represent an important advance in the optimization of long-term treatment outcomes in patients with schizophrenia.

scholarly journals Cancer Care and Survivorship Planning: Promises and Challenges

2009 ◽  
Vol 5 (3) ◽  
pp. 116-118 ◽  
Author(s):  
Len Lichtenfeld
Keyword(s):  
Cancer Care ◽  
Long Term Effects ◽  
Cancer Treatments ◽  
The Impact

Although we have made some progress in understanding long-term effects of some cancer treatments, there is still much more to learn about the impact of our treatments on our patients.

The Impact of Disability Compensation on Long-term Treatment Outcomes of Patients With Sciatica Due to a Lumbar Disc Herniation

Spine ◽  
2006 ◽  
Vol 31 (26) ◽  
pp. 3061-3069 ◽  
Author(s):  
Steven J. Atlas ◽  
Yuchiao Chang ◽  
Robert B. Keller ◽  
Daniel E. Singer ◽  
Yen A. Wu ◽  
...  
Keyword(s):  
Treatment Outcomes ◽  
Lumbar Disc Herniation ◽  
Disc Herniation ◽  
Lumbar Disc ◽  
Term Treatment ◽  
Long Term Treatment ◽  
The Impact ◽  
Disability Compensation

scholarly journals Transient inhibition and long-term facilitation of locomotion by phasic optogenetic activation of serotonin neurons

eLife ◽  
2017 ◽  
Vol 6 ◽  
Author(s):  
Patrícia A Correia ◽  
Eran Lottem ◽  
Dhruba Banerjee ◽  
Ana S Machado ◽  
Megan R Carey ◽  
...  
Keyword(s):  
Motor Behavior ◽  
Motor Impairment ◽  
Long Term Effects ◽  
Strong Suppression ◽  
Serotonin Neurons ◽  
Short And Long Term ◽  
Rapid Kinetics ◽  
Long Term Facilitation ◽  
The Impact

Serotonin (5-HT) is associated with mood and motivation but the function of endogenous 5-HT remains controversial. Here, we studied the impact of phasic optogenetic activation of 5-HT neurons in mice over time scales from seconds to weeks. We found that activating dorsal raphe nucleus (DRN) 5-HT neurons induced a strong suppression of spontaneous locomotor behavior in the open field with rapid kinetics (onset ≤1 s). Inhibition of locomotion was independent of measures of anxiety or motor impairment and could be overcome by strong motivational drive. Repetitive place-contingent pairing of activation caused neither place preference nor aversion. However, repeated 15 min daily stimulation caused a persistent increase in spontaneous locomotion to emerge over three weeks. These results show that 5-HT transients have strong and opposing short and long-term effects on motor behavior that appear to arise from effects on the underlying factors that motivate actions.

scholarly journals TIA and minor stroke: A qualitative study of long-term impact and experiences of follow-up care

2019 ◽  
Author(s):  
Grace M Turner ◽  
Christel McMullan ◽  
Lou Atkins ◽  
Robbie Foy ◽  
Jonathan Mant ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Stroke Prevention ◽  
Community Care ◽  
Minor Stroke ◽  
Framework Analysis ◽  
Diverse Range ◽  
Follow Up Care ◽  
The Impact

Abstract Background Transient ischaemic attack (TIA) and minor stroke are often considered transient events; however, many patients experience residual problems and reduced quality of life. Current follow-up healthcare focuses on stroke prevention and care for other long-term problems is not routinely provided. We aimed to explore patient and healthcare provider (HCP) experiences of residual problems post-TIA/minor stroke, the impact of TIA/minor stroke on patients’ lives, and current follow-up care and sources of support. Methods This qualitative study recruited participants from three TIA clinics, seven general practices and one community care trust in the West Midlands, England. Semi-structured interviews were conducted with 12 TIA/minor stroke patients and 24 HCPs from primary, secondary and community care with framework analysis. Results A diverse range of residual problems were reported post-TIA/minor stroke, including psychological, cognitive and physical impairments. Consultants and general practitioners generally lacked awareness of these long-term problems; however, there was better recognition among nurses and allied HCPs. Residual problems significantly affected patients’ lives, including return to work, social activities, and relationships with family and friends. Follow-up care was variable and medically focused. While HCPs prioritised medical investigations and stroke prevention medication, patients emphasised the importance of understanding their diagnosis, individualised support regarding stroke risk, and addressing residual problems. Conclusion HCPs could better communicate lay information about TIA/minor stroke diagnosis and secondary stroke prevention, and improve their identification of and response to important residual impairments affecting patients.

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