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1.
BMC Cancer ; 24(1): 494, 2024 Apr 18.
Article in English | MEDLINE | ID: mdl-38637744

ABSTRACT

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).


Subject(s)
Caregivers , Head and Neck Neoplasms , Humans , Quality of Life , Head and Neck Neoplasms/therapy , Caregiver Burden , Internet , Randomized Controlled Trials as Topic
2.
Brain Inj ; : 1-7, 2024 Apr 27.
Article in English | MEDLINE | ID: mdl-38676709

ABSTRACT

OBJECTIVE: The Mindfulness-Based Stress Reduction (MBSR) program has shown promising results for people suffering from mental fatigue after an acquired brain injury. The aim was to evaluate the feasibility of a MBSR program performed as an online self-study course for this group of people. METHODS: Sixty participants who had suffered an acquired brain injury with lasting mental fatigue were randomized to an online MBSR course or to a waitlist control group. They answered self-report questionnaires before start and after the course. RESULTS: Sixteen completed the MBSR program. With the repeated ANOVA no significant difference between groups was found, although there was a significant change in time (the repetition factor). The post-hoc paired t-test indicated a significant reduction and a large-to-median effect size in mental fatigue (p = 0.003, d = 0.896), depression (p = 0.038, d = 0.569) and anxiety (p = 0.030, d = 0.598) for the MBSR group. No significant changes were found for the control group. CONCLUSION: An online self-study MBSR program for people suffering from mental fatigue after an acquired brain injury can be a feasible option for those suffering from less severe mental fatigue and emotional symptoms, while others may require a program adapted to their needs.

3.
Eur Thyroid J ; 13(1)2024 Feb 01.
Article in English | MEDLINE | ID: mdl-38215285

ABSTRACT

Background: Mood disorders are common in Graves' disease despite treatment. The pathogenic mechanisms involved are unknown and so is whether previous psychiatric disease influences these symptoms. Methods: This is a longitudinal study conducted in Sweden on 65 women with newly diagnosed Graves' disease and 65 matched controls. Participants were examined during hyperthyroidism and after 15 months of treatment. Examinations included blood sampling, and psychiatric testing with the Comprehensive Psychopathological Rating Scale for Affective Syndromes and the Structured Clinical Interview for DSM-IV - Axis I Disorders. We also performed two analyses of a national population-based registry to determine previous psychiatric diagnoses and previous prescriptions of psychoactive drugs in (i) all patients we asked to participate and (ii) all Swedish women given a diagnosis of hyperthyroidism during 2013-2018, comparing them to matched controls. Results: There was no increased previous psychiatric comorbidity in Graves' patients compared to controls. There was no higher prevalence of psychiatric diagnoses and prescriptions of psychoactive drugs between (i) included GD patients compared to those who declined participation and (ii) women with a hyperthyroidism diagnosis in 5 years prior to their diagnosis, compared to matched controls. Depression scores and anxiety scores were higher in patients compared to controls both during hyperthyroidism (depression (median (IQR): 7.5 (5.0-9.5) vs 1.0 (0.5-2.5) P < 0.001), anxiety: 7.7 (5.0-11) vs 2.5 (1.0-4.0) P < 0.001) and after treatment (depression: 2.5 (1.5-5.0) vs 1.5 (0.5-3.5) P < 0.05), anxiety: 4.0 (2.5-7.5) vs 3.0 (1.5-5.0) P < 0.05). Patients with a previous psychiatric condition, mild eye symptoms, and a younger age had more anxiety at 15 months compared to patients without these symptoms and a higher age (all p<0.05). Conclusion: Graves' disease affects patients' mood despite treatment. A previous psychiatric condition, mild eye symptoms, and a younger age increase the vulnerability for long-lasting symptoms and require specific attention.


Subject(s)
Graves Disease , Hyperthyroidism , Humans , Female , Infant , Longitudinal Studies , Graves Disease/complications , Hyperthyroidism/complications , Mood Disorders/complications , Psychotropic Drugs/therapeutic use
4.
Eur J Oncol Nurs ; 64: 102347, 2023 Jun.
Article in English | MEDLINE | ID: mdl-37290161

ABSTRACT

PURPOSE: Being an informal caregiver of an individual with head and neck cancer can be demanding. Still, informal caregivers can provide valuable support to patients throughout the disease trajectory. The aim of this study was to explore informal caregivers' views on their challenges and needs in attaining high preparedness for caregiving. METHODS: Fifteen informal caregivers of individuals with head- and neck cancer participated in a focus group discussion or an individual interview. Thematic analysis utilizing an inductive approach was performed. RESULTS: The results describe the challenges that informal caregivers to individuals with head and neck cancer perceive and their needs for support in preparedness for caregiving. Three main themes were found: Challenges of being an informal caregiver, Transformation in life and Informal caregiver' needs of support and sharing care. CONCLUSION: This study contributes to the understanding of the challenges for informal caregivers to individuals with head and neck cancer in increasing preparedness for caregiving. To improve preparedness for caregiving, informal caregivers need education, information and support regarding physical, psychological and social issues for individuals with head and neck cancer.


Subject(s)
Caregivers , Head and Neck Neoplasms , Humans , Caregivers/psychology , Internet , Focus Groups , Social Support , Head and Neck Neoplasms/therapy
5.
Internet Interv ; 32: 100625, 2023 Apr.
Article in English | MEDLINE | ID: mdl-37273929

ABSTRACT

Background: Cancer is a serious disease that commonly causes significant psychological distress. The internet-based intervention (iCAN-DO), utilizing a stepped care approach for the treatment of anxiety and depression in individuals with cancer, has been shown to have favorable results for symptoms of depression at the primary endpoint, 10 months after randomization compared to standard care (SC). The aim of the present study was to evaluate the long-term effects of the intervention 18 and 24 months after randomization. Methods: Patients with breast, colorectal, or prostate cancer and a score > 7 on either of the Hospital Anxiety and Depression Scale (HADS) subscales (n = 245) were recruited to the study in conjunction with a regular hospital visit. They were randomized to access to the stepwise iCAN-DO intervention for 24 months or to SC. Step 1 of the intervention comprised psycho-educative online material. In Step 2, internet-based cognitive-behavioral therapy with individual online support from a therapist was added. Step 2 was offered to those who reported persistent anxiety or depression symptoms (>7 on HADS), also at 1, 4, and/or 7 months after randomization. Missing data were imputed using the last rank carried forward method and used for the main analyses according to the intention-to-treat approach. Effects sizes (Cohen's d), and minimally clinically important difference (MCID) were calculated. Linear mixed models were used to analyze intervention effects over time. Results: Symptoms of depression decreased significantly (p < 0.05) in the iCAN-DO group compared with the SC group from baseline to 18 months (d = 0.29), but not to 24 months (d = 0.27). Even though the average iCAN-DO group participant surpassed a MCID in symptoms of anxiety (>2 p) at both long-term follow-ups, the differences did not reach statistical significance, either at 18 months (p = 0.10) or 24 months (p = 0.09). Positive effects of iCAN-DO compared with the SC were also shown for some secondary HRQoL-outcomes; social functioning at 18 months (p = 0.02) and 24 months (p = 0.001), and sleep problems at 24 months (p = 0.01). Conclusion: A stepped-care internet-based intervention that has previously shown positive results for symptoms of depression at 10 months did show similar positive long-term effects also at 18 months. For symptoms of anxiety, no effect could be shown. The internet may provide an effective format for interventions to reduce symptoms of depression after cancer at patients' own choice of time, regardless of distance to a psycho-oncology clinic.

6.
JMIR Cancer ; 9: e45748, 2023 May 30.
Article in English | MEDLINE | ID: mdl-37252765

ABSTRACT

BACKGROUND: Informal caregivers of patients with head and neck cancer (HNC), such as the patient's spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment. OBJECTIVE: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. METHODS: Focus groups were conducted with 15 informal caregivers and 13 health care professionals. Both informal caregivers and health care professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data. RESULTS: We investigated informal caregivers' needs, critical factors for adoption, and desired functionalities of Carer eSupport. A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches. CONCLUSIONS: This study provided an in-depth understanding of informal caregivers' contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers' well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful eHealth interventions with a clear focus on users' well-being and positive emotions, especially for informal caregivers of patients with HNC. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-057442.

7.
ESC Heart Fail ; 10(4): 2281-2289, 2023 08.
Article in English | MEDLINE | ID: mdl-37139589

ABSTRACT

AIMS: Knowledge of long-term outcomes in patients with atrial fibrillation (AF) remains limited. We sought to evaluate the risk of new-onset heart failure (HF) in patients with AF and a low cardiovascular risk profile. METHODS AND RESULTS: Data from the Swedish National Patient Register were used to identify all patients with a first-time diagnosis of AF without underlying cardiovascular disease at baseline between 1987 and 2018. Each patient was compared with two controls without AF from the National Total Population Register. In total, 227 811 patients and 452 712 controls were included. During a mean follow-up of 9.1 (standard deviation 7.0) years, the hazard ratio (HR) for new-onset HF was 3.55 [95% confidence interval (CI) 3.51-3.60] in patients compared with controls. Women with AF (18-34 years) had HR for HF onset 24.6 (95% CI 7.59-80.0) and men HR 9.86 (95% CI 6.81-14.27). The highest risk was within 1 year in patients 18-34 years, HR 103.9 (95% CI 46.3-233.1). The incidence rate within 1 year increased from 6.2 (95% CI 4.5-8.6) per 1000 person-years in young patients (18-34 years) to 142.8 (95% CI 139.4-146.3) per 1000 person-years among older patients (>80 years). CONCLUSIONS: Patients studied had a three-fold higher risk of developing HF compared with controls. Young patients, particularly women, carry up to 100-fold increased risk to develop HF within 1 year after AF. Further studies in patients with AF and low cardiovascular risk profile are needed to prevent serious complications such as HF.


Subject(s)
Atrial Fibrillation , Heart Failure , Male , Humans , Female , Atrial Fibrillation/complications , Atrial Fibrillation/epidemiology , Atrial Fibrillation/diagnosis , Case-Control Studies , Sweden/epidemiology , Risk Factors , Stroke Volume , Heart Failure/epidemiology , Heart Failure/etiology , Heart Failure/diagnosis
8.
Eur Thyroid J ; 12(4)2023 07 12.
Article in English | MEDLINE | ID: mdl-37224080

ABSTRACT

Objective: Mental fatigue, depression, anxiety, and cognitive complaints are common in Graves' disease (GD). Our aims were to assess the relationship between these variables in patients with GD during both hyperthyroidism and a long stable euthyroidism. Methods: A prospective longitudinal case-control study where 65 premenopausal women diagnosed with GD and 65 matched controls were assessed twice with 15 months in between. The first visit for patients was in overt hyperthyroidism and the second after treatment. Results: During the hyperthyroid phase, mental fatigue, depression, and anxiety were significantly increased for GD patients compared to controls (all P < 0.001). Among GD patients, 89% reported mental fatigue and among controls 14%. No difference in cognitive tests was found. After 15 months, significant improvements for GD patients after treatment were found for the items of mental fatigue, depression, and anxiety (all P < 0.001), but these were unchanged in controls. GD patients reported residual mental fatigue (38%), 23% without depression, and 15% mental fatigue combined with depression. Self-reported cognitive complaints were pronounced while cognitive tests did not reveal any deficiencies. Conclusion: Mental fatigue and emotional distress are common in the hyperthyroid phase. These improve with treatment but are still more common in GD patients after 15 months of therapy than in controls. The residual mental fatigue is shown to be a phenomenon distinct from depression in this study. This indicates the importance of assessing mental fatigue in GD patients and underlines the need for rehabilitation and healthcare support as fatigue will have consequences for work ability.


Subject(s)
Graves Disease , Hyperthyroidism , Humans , Female , Case-Control Studies , Prospective Studies , Depression/epidemiology , Graves Disease/complications , Hyperthyroidism/psychology , Cognition , Mental Fatigue/etiology
9.
Acta Oncol ; 62(4): 414-421, 2023 Apr.
Article in English | MEDLINE | ID: mdl-37074759

ABSTRACT

BACKGROUND: Cost-effectiveness is important in the prioritisation between interventions in health care. Exercise is cost-effective compared to usual care during oncological treatment; however, the significance of exercise intensity to the cost-effectiveness is unclear. In the present study, we aimed to evaluate the long-term cost-effectiveness of the randomised controlled trial Phys-Can, a six-month exercise programme of high (HI) or low-to-moderate intensity (LMI) during (neo)adjuvant oncological treatment. METHODS: A cost-effectiveness analysis was performed, based on 189 participants with breast, colorectal, or prostate cancer (HI: n = 99 and LMI: n = 90) from the Phys-Can RCT in Sweden. Costs were estimated from a societal perspective, and included cost of the exercise intervention, health care utilisation and productivity loss. Health outcomes were assessed as quality-adjusted life-years (QALYs), using EQ-5D-5L at baseline, post intervention and 12 months after the completion of the intervention. RESULTS: At 12-month follow-up after the intervention, the total cost per participant did not differ significantly between HI (€27,314) and LMI exercise (€29,788). There was no significant difference in health outcome between the intensity groups. On average HI generated 1.190 QALYs and LMI 1.185 QALYs. The mean incremental cost-effectiveness ratio indicated that HI was cost effective compared with LMI, but the uncertainty was large. CONCLUSIONS: We conclude that HI and LMI exercise have similar costs and effects during oncological treatment. Hence, based on cost-effectiveness, we suggest that decision makers and clinicians can consider implementing both HI and LMI exercise programmes and recommend either intensity to the patients with cancer during oncological treatment to facilitate improvement of health.


Subject(s)
Exercise , Neoplasms , Male , Humans , Cost-Benefit Analysis , Neoplasms/therapy , Sweden , Quality-Adjusted Life Years , Quality of Life
10.
Eur Thyroid J ; 12(3)2023 06 01.
Article in English | MEDLINE | ID: mdl-36912797

ABSTRACT

Patients with Graves' disease (GD) not only need appropriate medical care, but they also need to be cared for. The aim of this review is to examine the literature on GD patient needs, expectations, perceptions, and quality of life. We will also present methods for patient care, define gaps in knowledge, and suggest factors that can be introduced into the regular care of GD patients. Patient information, teamwork with thyroid/contact nurses, education of personnel and patients, quality of life measurements, and the formation of a rehabilitation program have enough evidence to be implemented into regular care. However, visualizing patient needs through person-centered care requires further evaluation in GD patients before being implemented in routine care. We conclude that considerable improvement in nursing can be achieved in relation to GD.


Subject(s)
Graves Disease , Quality of Life , Humans , Sweden/epidemiology , Graves Disease/therapy , Patient-Centered Care
11.
Prim Health Care Res Dev ; 23: e54, 2022 09 07.
Article in English | MEDLINE | ID: mdl-36069067

ABSTRACT

AIM: The aim of the study was to explore how persons with systemic mastocytosis (SM) described the time between the onset of symptoms and signs and getting the diagnosis. BACKGROUND: SM is a rare disease caused by the accumulation of clonal mast cells with abnormal function. The symptoms and signs of the disease are varied, often diffuse and affect individuals differently. Due to this complexity, a multi-disciplinary diagnostic approach is required, in which general practitioners play an important part in identifying and referring patients relevant for such investigations. METHODS: Sixteen persons with SM were interviewed about their experiences of the time before the diagnosis was received. Systematic text condensation was used in the analysis process. FINDINGS: The time between symptom and signs onset and diagnosis was perceived as difficult. SM often had a complex and unpredictable effect on a person's daily life, long before diagnosis. In the analysis, three themes were found. Having symptoms and signs with an unknown cause included the participants' descriptions of numerous symptoms and signs, often years before diagnosis. These could be severe and result in worries for both participants and their next-of-kin. Dealing with the symptoms and signs encompassed the different ways in which the participants coped with the symptoms and signs, and sought relief. Being a patient without a diagnosis underlined the lack of information and knowledge within healthcare, often resulting in a delayed or incorrect diagnosis. The study highlighted the importance of a person-centred approach and the need to increase knowledge of the disease within primary care, to shorten this stressful and vulnerable time.


Subject(s)
Mastocytosis, Systemic , Humans , Mast Cells , Mastocytosis, Systemic/diagnosis , Surveys and Questionnaires
12.
Front Neurosci ; 16: 972720, 2022.
Article in English | MEDLINE | ID: mdl-36161148

ABSTRACT

Pathological fatigue is present when fatigue is perceived to continually interfere with everyday life. Pathological fatigue has been linked with a dysfunction in the cortico-striatal-thalamic circuits. Previous studies have investigated measures of functional connectivity, such as modularity to quantify levels of segregation. However, previous results have shown both increases and decreases in segregation for pathological fatigue. There are multiple factors why previous studies might have differing results, including: (i) Does the functional connectivity of patients with pathological fatigue display more segregation or integration compared to healthy controls? (ii) Do network properties differ depending on whether patients with pathological fatigue perform a task compared to periods of rest? (iii) Are the brain networks of patients with pathological fatigue and healthy controls differently affected by prolonged cognitive activity? We recruited individuals suffering from pathological fatigue after mild traumatic brain injury (n = 20) and age-matched healthy controls (n = 20) to perform cognitive tasks for 2.5 h. We used functional near-infrared spectroscopy (fNIRS) to assess hemodynamic changes in the frontal cortex. The participants had a resting state session before and after the cognitive test session. Cognitive testing included the Digit Symbol Coding test at the beginning and the end of the procedure to measure processing speed. We conducted an exploratory network analysis on these resting state and Digit Symbol Coding sessions with no a priori hypothesis relating to how patients and controls differ in their functional networks since previous research has found results in both directions. Our result showed a Group vs. Time interaction (p = 0.026, η p 2 = 0.137), with a post hoc test revealing that the TBI patients developed higher modularity toward the end of the cognitive test session. This work helps to identify how functional networks differ under pathological fatigue compared to healthy controls. Further, it shows how the functional networks dynamically change over time as the patient performs tasks over a time scale that affect their fatigue level.

14.
Front Behav Neurosci ; 16: 869377, 2022.
Article in English | MEDLINE | ID: mdl-35775012

ABSTRACT

Pathological mental fatigue adversely affects endurance in the performance of tasks over time, with negative impact on work ability. There are currently no methods for objectively assessing work ability for patients suffering from mental fatigue. In this study, work ability in relation to mental fatigue as a screening method was evaluated, using the Work Ability Index (WAI) and Mental Fatigue Scale (MFS). Included participants represented three patient groups commonly affected by mental fatigue; acquired brain injury (n = 49, traumatic brain injury, stroke), burn-out syndrome (55) and hypothyroidism (50). The results showed a significant correlation between WAI and MFS (r = -0.754) and status in the workplace (WAI r = 0.722, MFS r = -0.443) for all groups. The WAI and MFS were significant predictors for status in the workplace (p < 0.001) and explained 53% of the variance. This screening method can help health care professionals to identify people who are mentally fatigued with a reduced ability to work or return to work after illness, and who are in need of in-depth investigation. It is important to initiate treatment early with the aim of promoting a sustainable working life and general well-being of the individual.

15.
Ups J Med Sci ; 1272022.
Article in English | MEDLINE | ID: mdl-35756572

ABSTRACT

Objectives: A variety of non-evidence-based dietary advice on modified fibre and lactose intakes are provided to patients undergoing pelvic radiotherapy to counteract treatment-related bowel symptoms. More knowledge on the nutritional consequences of such advice is needed. This study aimed to explore how advice on modified fibre and lactose intakes during pelvic radiotherapy was associated with nutrient intakes amongst patients with prostate cancer. Methods: A total of 77 Swedish men who underwent radiotherapy (50/2 Gy + boost 20-30 Gy) in 2009-2014 due to prostate cancer were given dietary advice at radiotherapy onset (baseline) and at 4 and 8 weeks after radiotherapy onset, to modify their fibre and lactose intakes. At baseline, the participants completed a food frequency questionnaire (FFQ) and a 24-h dietary recall. At 4 and 8 weeks, the participants completed the FFQ and a 4-day estimated food record.Fibre and lactose intakes were measured by intake scores calculated from the FFQs. Multiple linear regression models were used to analyse associations between intake scores and fibre- and lactose-related nutrients. Results: In adjusted analyses, there were few significant associations between dietary advice on modified fibre and lactose intakes and observed intakes of fibre- and lactose-related nutrients. A more modified lactose intake was thus associated with a lower intake of calcium (P = 0.041), whilst a more modified fibre intake was associated with a higher value for the change in intake of vitamin C (P = 0.016). Conclusions: Dietary advice on modified fibre and lactose intake was in most cases not significantly associated with altered nutrient intakes, rather the energy and nutrient intakes were mostly stable during the pelvic radiotherapy. More research is needed on the nutritional consequences of dietary advice on modified fibre and lactose intakes to reach consensus on if they should continue to be provided in the clinic.


Subject(s)
Lactose , Prostatic Neoplasms , Diet , Dietary Fiber , Eating , Humans , Male , Prostatic Neoplasms/radiotherapy
16.
BMJ Open ; 12(5): e057442, 2022 05 27.
Article in English | MEDLINE | ID: mdl-35623759

ABSTRACT

INTRODUCTION: It is strongly recommended that randomised controlled trials are preceded with an exploration of the needs of the target population and feasibility testing of the intervention. The present study protocol is set out to describe these steps in the development of a complex intervention.The past decades' transition of care from inpatient to outpatient settings has increased the complexity of caregivers' responsibilities, which they may not be prepared for. There is a need to support informal caregivers (ICs) to prepare them for caregiving and decrease the caregiver burden. The main aim of this study is to describe the development of an internet-based intervention (Carer eSupport) to improve ICs' ability to support individuals with head and neck cancer and to describe the testing of the feasibility and acceptability of Carer eSupport. METHODS AND ANALYSIS: This is a multicentre study involving the ear, nose and throat clinics and the oncology and radiotherapy clinics at three university hospitals. The study protocol comprises two phases, development and feasibility testing, using the Medical Research Council framework for developing a complex intervention. Carer eSupport will be based on the results from focus group discussions with ICs and healthcare professionals (planned for n=6-8 in respective groups) and scientific evidence, the Social Cognitive Theory and the Theory of Acceptance and Use of Technology. The feasibility testing will include 30 ICs who will have access to Carer eSupport for 1 month. The feasibility testing will be evaluated with a mixed-method design. ETHICS AND DISSEMINATION: All procedures have been approved by the Ethics Committee at Uppsala University (Dnr: 2020-04650). Informed consent will be obtained before enrolment of patients, their ICs and healthcare staff. The feasibility testing is registered at Clinicaltrials.gov (Identifier: NCT05028452). Findings will be disseminated in peer-reviewed journal publications. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov (Identifier: NCT05028452).


Subject(s)
Head and Neck Neoplasms , Internet-Based Intervention , Caregivers , Feasibility Studies , Health Personnel , Humans , Multicenter Studies as Topic
17.
Acta Oncol ; 61(7): 888-896, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35607981

ABSTRACT

BACKGROUND: Exercise during oncological treatment is beneficial to patient health and can counteract the side effects of treatment. Knowledge of the societal costs associated with an exercise intervention, however, is limited. The aims of the present study were to evaluate the long-term resource utilisation and societal costs of an exercise intervention conducted during (neo)adjuvant oncological treatment in a randomised control trial (RCT) versus usual care (UC), and to compare high-intensity (HI) versus low-to-moderate intensity (LMI) exercise in the RCT. METHODS: We used data from the Physical Training and Cancer (Phys-Can) project. In the RCT, 577 participants were randomised to HI or to LMI of combined endurance and resistance training for 6 months, during oncological treatment. The project also included 89 participants with UC in a longitudinal observational study. We measured at baseline and after 18 months. Resource utilisation and costs of the exercise intervention, health care, and productivity loss were compared using analyses of covariance (RCT vs. UC) and t test (HI vs. LMI). RESULTS: Complete data were available for 619 participants (RCT HI: n = 269, LMI: n = 265, and UC: n = 85). We found no difference in total societal costs between the exercise intervention groups in the RCT and UC. However, participants in the RCT had lower rates of disability pension days (p < .001), corresponding costs (p = .001), and pharmacy costs (p = .018) than the UC group. Nor did we find differences in resource utilisation or costs between HI and LMI exercise int the RCT. CONCLUSION: Our study showed no difference in total societal costs between the comprehensive exercise intervention and UC or between the exercise intensities. This suggests that exercise, with its well-documented health benefits during oncological treatment, produces neither additional costs nor savings.


Subject(s)
Neoplasms , Resistance Training , Cost-Benefit Analysis , Exercise , Health Services , Humans , Neoplasms/therapy , Physical Therapy Modalities , Quality of Life
18.
Stud Health Technol Inform ; 294: 214-218, 2022 May 25.
Article in English | MEDLINE | ID: mdl-35612059

ABSTRACT

Informal Caregivers such as a spouse, other close relatives or friends of cancer patients can play an essential role in home-based treatment and care. However, the informal caregivers might not be prepared for this responsibility, and they might have several unmet requirements for taking care of patients in the home environment. The informal caregivers' physical, social and psychological health is also profoundly affected due to the health conditions of their relatives. We propose a User-centred Positive Design as a hybrid framework by merging the traditional User-cantered design and positive design frameworks to enhance the informal caregivers' subjective well-being. Our ongoing project (Carer-eSupport) will be used as a case study, and its main objective is to co-create and evaluate a web-based support system for informal caregivers of people with cancer. The proposed framework can be used for the design and development of health information systems with a special focus on users' wellbeing and positive emotions.


Subject(s)
Caregivers , Neoplasms , Caregivers/psychology , Friends , Humans , Mental Health , Neoplasms/therapy
19.
Support Care Cancer ; 30(7): 5949-5963, 2022 Jul.
Article in English | MEDLINE | ID: mdl-35391574

ABSTRACT

PURPOSE: This study aimed to evaluate the effect of high intensity (HI) vs low-to-moderate intensity (LMI) exercise on health-related quality of life (HRQoL) up to 18 months after commencement of oncological treatment in patients with breast, colorectal or prostate cancer. In addition, we conducted a comparison with usual care (UC). METHODS: Patients scheduled for (neo)adjuvant oncological treatment (n = 577) were randomly assigned to 6 months of combined resistance and endurance training of HI or LMI. A longitudinal descriptive study (UC) included participants (n = 89) immediately before the RCT started. HRQoL was assessed by EORTC QLQ-C30 at baseline, 3, 6 and 18 months (1 year after completed exercise intervention) follow-up. Linear mixed models were used to study the groups over time. RESULTS: Directly after the intervention, HI scored significant (P = 0.02), but not clinically relevant, higher pain compared with LMI. No other significant difference in HRQoL was found between the exercise intensities over time. Clinically meaningful improvements in HRQoL over time were detected within both exercise intensities. We found favourable significant differences in HRQoL in both exercise intensities compared with UC over time. CONCLUSION: This study adds to the strong evidence of positive effect of exercise and shows that exercise, regardless of intensity, can have beneficial effects on HRQoL during oncological treatment and also for a substantial time after completion of an exercise intervention. In this study, for one year after. IMPLICATIONS FOR CANCER SURVIVORS: Patients can be advised to exercise at either intensity level according to their personal preferences, and still benefit from both short-term and long-term improvements in HRQoL.


Subject(s)
Endurance Training , Quality of Life , Exercise , Exercise Therapy/methods , Humans , Male , Treatment Outcome
20.
Lakartidningen ; 1192022 03 30.
Article in Swedish | MEDLINE | ID: mdl-35353369

ABSTRACT

Mental fatigue or brain fatigue is a pathological and disabling symptom with diminished mental energy. It can be a long-lasting consequence after trauma or disease affecting the brain. The person can do most things in the moment and can be perceived as completely healthy, but the mental energy is insufficient over time and affects the ability to work and participate in social activities. After a conversation, for example, the person can be completely drained of energy and the recovery time is disproportionally long. Here we describe the phenomenon of mental fatigue, provide an explanatory model for how the condition can arise, point out diagnostic methods and possible treatments, which are currently in the research stage but may be implemented in healthcare within the foreseeable future.


Subject(s)
Mental Fatigue , Humans , Mental Fatigue/diagnosis , Mental Fatigue/etiology , Mental Fatigue/therapy
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