Chronic Illness最新文献

Objectives: Severe chronic obstructive pulmonary disease affects and changes the lives of both affected persons and next of kin. There is a need for support and a sense of coherence to manage the life situation and minimize the symptom and caregiver burden. The aim of this study was to diverge or converge views of symptom burden, caregiver burden, the need for support, and sense of coherence in persons with chronic obstructive pulmonary disease and their next of kin to gain a deeper and broader knowledge and understanding.

Methods: A mixed methods study with data from interviews and four validated questionnaires from persons affected by chronic obstructive pulmonary disease in GOLD stages III and IV and their next of kin.

Results: Questionnaires from 112 persons affected by chronic obstructive pulmonary disease, and 71 next of kin, together with 25 and 21 interviews, show that; there is a difference between estimated symptoms and caregiver burden and experiences expressed in their own words. There is also a defect regarding meaningfulness, comprehensibility, and manageability affecting daily life. Symptoms and caregiver burden, together with the sense of coherence, strengthen the need for support.

Discussion: The complexity of the life situation leads to a need for supportive interventions to strengthen internal and external resources.

Objectives: We intended to assess changes in pain-related outcomes among rural adults who completed 6-week self-management programs offered remotely during the COVID-19 pandemic.

Methods: We offered the Chronic Pain Self-Management Program and Chronic Disease Self-Management Program between May 2020 and December 2021. Delivery mode options included 2½-hour weekly videoconference, mailed toolkit plus 1-hour weekly conference call, and mailed toolkit alone. We conducted pre- and post-workshop surveys including questions on patient activation, self-efficacy, depression and pain disability. We used paired t-tests to compare pre-post differences in outcomes among participants completing 4 or more sessions.

Results: Among 218 adults reporting chronic pain, mean age was 57; 83.6% were female; and 49.5% participated via videoconference, 23.4% by phone and 27.1% via mailed toolkit alone. Completion rates were higher among phone (88.2%) versus videoconference (60.2%) workshop participants. Among completers, patient activation (mean change  =  3.61, p  =  0.01) and self-efficacy (mean change  =  3.72, p < 0.0001) increased while depression scores (mean change  =  -1.03, p  =  0.01), pain disability (mean change  =  -0.93, p  =  0.003) and pain symptoms (mean change  =  -0.61, p  =  0.001) decreased over the 6-week period.

Discussion: Self-management programs offered remotely during the pandemic were successful in improving patient activation, self-efficacy, depression, pain disability, and pain symptoms among rural adults experiencing chronic pain.

Objectives: To assess characteristics of hospitalized adolescents facing chronic diseases, correlating the perceptions of their illness, quality of life and the prevalence of risk behaviors, considering gender and the diseases' durations.

Methods: The sample consisted of 61 adolescents, aged between 10 and 19 years, with chronic diseases, hospitalized at the University Hospital of the State University of Londrina. They answered a questionnaire and the scales World Health Organization Quality of Life (WHOQOL-BREF) and Illness Perception Questionnaire (IPQ). They were divided in groups, according to the durations of the disease: group 1 (up to 4 years) and group 2 (5 years or more).

Results: Group 2 demonstrated higher leisure activity (p = 0.02) and more painful symptoms (p = 0.02). In WHOQOL-BREF, group 2 had a higher quality of life in the domain on environment (p = 0.02) and a higher total score (p = 0.04). Lower scores on the IPQ were associated with higher scores on the WHOQOL-BREF. Positive correlation was found between WHOQOL-BREF total score and years of disease, in which male presented higher scores.

Conclusions: These findings may alert to the need for more knowledge about the diseases and the importance of encouraging ways to improve quality of life and care to reduce risky behaviors.

Objectives: This service evaluation explored the experiences of families receiving care in a paediatric chronic fatigue service. The evaluation aimed to improve service provision across paediatric chronic fatigue services more widely.

Methods: Children and young people aged 7-18 years (n  =  25) and parents/carers (n  =  25) completed a postal survey exploring experiences of a paediatric chronic fatigue service. Quantitative data were analysed descriptively, and qualitative data were analysed using thematic analysis.

Results: Most service usersand parents/carers (88%) agreed that the service met their needs, that they felt supported by staff, and most notably, a large portion (74%) reported the team increased their activity levels. A small number disagreed (7%) with statements relating to positive links with other services, ease of talking to staff and suitability of appointment type. The thematic analysis revealed three themes: help managing chronic fatigue syndrome, experience of professional support and accessibility of service. Families reported benefiting from increased understanding of chronic fatigue syndrome, learning new strategies, the team linking with schools, feeling validated and mental health support. Accessibility was a particular problem including the service location, setup of appointments and difficulty contacting the team.

Discussion: The evaluation presents recommendations for paediatric Chronic Fatigue services to improve service user experiences.

Objective: A consideration of chronic illness according to illness labels that are medically understood as opposed to being outside of medical understanding may reveal unique differences in how individuals understand their illness and how such lay understandings relate to health-related quality of life. Study aims are framed according to the commonsense model of self-regulation with a focus on characterizing illness representations according to chronic illness diagnosis type.

Methods: Individuals suffering from symptomatic chronic illnesses (n  =  192) completed measures of illness representations, coping, and general health. Participants were categorized into one of two groups based on reported diagnosis/symptoms: (a) conventional diagnosis (CD) or (b) functional somatic syndrome (FSS).

Results: FSS participants reported lower illness coherence and greater illness identity than CD participants. Overall, illness coherence predicted negative coping which mediated the relationship between illness coherence and general health.

Conclusions: Minimal differences were found in illness representations across FSS and CD groups with distinctions found only for illness coherence and identity. Illness coherence stands out as particularly important for coping and health-related quality of life for individuals with ongoing symptoms. Healthcare professionals should work carefully with chronically ill populations to address potential impacts of illness coherence, especially among FSS patients.

Objectives: The aim of the present study is to evaluate the impact of Covid-19 on utilization of chronic diseases services.

Methods: Interrupted time-series design was used to examine the utilization of chronic diseases services before and during the Covid-19 pandemic among hospitals in Iran. Chronic obstructive pulmonary disease (COPD), asthma, type 2 diabetes, heart failure, and chemotherapy were selected as a proxy to indicate the impact of Covid-19 on utilization of chronic diseases services. Data were collected in 24 sites from 12 months before the onset of Covid-19 (from March 2019 to February 2020) to 12 months during the Covid-19 pandemic (February 2020 to March 2021).

Results: A total of 7,039,378 services were provided, of which 51.92% were provided for women and 62.73% for >65 age group. A sudden decrease was observed in monthly utilization of services during the Covid-19 pandemic; ranging from 13.91 (95% CI = -21.73, 6.10, P = 0.001) for chemotherapy to 606.39 (95% CI = -1040.72, 172.06, P = 0.009) for heart failure services per 100 thousand population. A decrease was observed in COPD services; 15.28 services compared with the period before Covid-19. Subsequently, the monthly utilization trends of asthma, type 2 diabetes, and chemotherapy services increased significantly (P < 0.05).

Discussion: Although chronic diseases are a factor in more severe form of Covid-19, their failure to seek diagnostic, prevention and treatment services has somewhat complicated the issue.

Background: Hemodialysis patients are common to have renal anemia in the nephrology practice. For the renal anemia, the high-dose iron from the intravenous route is an important treatment option. We can understand the treatment effects and cardiovascular events of high-dose intravenous iron reviewing the randomized clinical trials.

Methods: We compared the high-dose and low-dose iron treatments to find if the high-dose intravenous iron can influence the hematological parameters more significantly than the low-dose iron. The cardiovascular events were also analyzed for the high-dose iron treatment. Six studies with a total of 2422 renal anemia patients under hemodialysis were enrolled. We focused the outcomes of hemoglobin, transferrin saturation percentage, ferritin, erythropoietin dose, and cardiovascular events.

Results: The high-dose intravenous iron might be associated with a greater number of ferritin, transferrin saturation percentage, and hemoglobin. In addition, the erythropoietin dose was less needed to maintain the ideal hemoglobin range in the high-dose intravenous iron group.

Conclusions: In current meta-analysis, the high-dose intravenous iron might show the superior effects on the ferritin, transferrin saturation percentage, and hemoglobin levels and needed dose of erythropoietin when compared to low-dose iron treatment.

Objective: This study aimed to explore self-management practices among patients and parents of children with sickle cell disease (SCD).

Methods: The qualitative descriptive design was employed. The study involved 19 participants comprising adult SCD patients ≥16 years, and nine parents of SCD children ≤ 15 years. Purposive sampling was conducted to select participants from a teaching hospital and SCD association. Data was collected using one-on-one interviews, transcribed verbatim, and analysed using qualitative content analysis.

Results: Self-management was reported through four categories including preventive health, self-monitoring, self-diagnosis, and self-treatment. Hydration, nutrition, activity limitation, avoidance of cold temperatures, and supportive medications were the most common preventive health actions. Regarding self-monitoring and self-diagnosis, the parents emphasized objective indicators such as changes in urine and eye colour compared to the adults who utilize subjective indicators such as feeling unwell and easy fatigue. Pharmacological and non-pharmacological measures were reported by both groups for treating painful episodes, fever, leg ulcers, priapism, and unspecified symptoms.

Discussion: The participants in this study practice several self-management actions with some differences in application between adults and children. Tailored self-management services may be helpful for adults and children when developing services for SCD patients.

Background: Spirituality is a vast dimension influenced by cultural and personal differences. Little is known about the spirituality of patients suffering from a chronic disease in Italy from palliative care hospital settings.

Aim: To investigate patients' perspectives about their spirituality during their illness.

Method: The research question was: 'How does living with chronic disease inform/shape the spiritual dimension of patients?'. To address it, we conducted a qualitative interview study with thematic analysis.

Results: We enrolled 21 participants among patients suffering from rheumatic, haematologic, neurodegenerative and respiratory chronic diseases. Participants generally had great difficulty answering the questions researchers posed and often could not define 'spirituality'. We found different topics grouped under four main themes: definition of spirituality, internal dialogue, expression of spirituality in everyday life and take stock. Religion is not reported as an answer to spiritual suffering, even in a country that is felt religious-driven like Italy.

Discussion: Patients are generally not cognizant of this dimension even living with a chronic disease; consequently, they cannot express spiritual needs because they can't recognise them. Health professionals should identify this dimension and its characteristics to recognise potential spiritual suffering.

Objectives: To synthesize interventions designed to enhance resilience in family caregivers (FCs).

Methods: Electronic databases including PubMed, CINAHL, PsycINFO, and Scopus, were searched using index and keyword methods for articles published before January 2020. The review process followed the PRISMA review guidelines. Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT).

Results: Six studies (seven articles) were included in this review. Quantitative evidence supports the benefits of psychoeducation, mindfulness-based intervention, and cognitive behavioral therapy (CBT)-based intervention but not expressive writing in improving in FCs' resilience. Four of the six included studies were randomized controlled trials. All included studies only met 40% to 60% of the MMAT criteria, indicating low to moderate levels of study quality.

Conclusion: This review showed emerging evidence that psychoeducation, mindfulness-based intervention, and CBT-based intervention may improve caregiver resilience. However, it remains unclear which intervention and what dosage is the most effective in promoting FCs' resilience. Due to the small number of relevant studies and a low-to-moderate level of overall study quality, more rigorous clinical trials are needed to strengthen the current limited evidence base for FC resilience interventions.