Maintaining high adherence rates (session attendance and compliance) in exercise programs during breast cancer treatment can be challenging. We aimed to identify adherence rates and predictors to an ...exercise program during adjuvant breast cancer treatment.
Ninety-two patients with localized breast cancer undergoing chemotherapy were randomly assigned to an 18-week supervised moderate-to-high intensity aerobic and resistance exercise program, including two 1-hour sessions/week. Additionally, participants were asked to be physically active for at least 30 minutes/day on at least three other days. We report median percentages for attendance, compliance with the prescribed duration and intensity of aerobic and muscle strength exercises, and the exercise advice given. Predictors included in univariate and multivariable linear regression models were demographical, tumor- and treatment-related factors, constructs of the theory of planned behavior, psychological and physical factors.
Patients attended 83% (interquartile range: 69-91%) of the supervised sessions. Compliance with the duration of aerobic exercise, high-intensity aerobic exercise (cycling at the ventilatory threshold), muscle strength exercises and the exercise advice were 88%(64-97%), 50%(22-82%), 84%(65-94%) and 61%(33%-79%), respectively. Education, radiotherapy, BMI and physical fatigue were important predictors of adherence to supervised exercise. Beliefs about planned behaviors were important predictors, especially for compliance with the exercise advice.
Attendance to and compliance with an 18-week aerobic and strength exercise program were high. The lowest compliance was found for high-intensity supervised aerobic exercise. The identified predictors should be considered when designing or adapting exercise programs for patients with localized breast cancer to increase adherence.
Current Controlled Trials ISRCTN43801571 Dutch Trial Register NTR2138.
Full text
Available for:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background:
Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver ...burden is needed in order to develop supportive interventions.
Aim:
To evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers.
Design:
A systematic review.
Data sources:
Four electronic databases were searched up to 2017. Studies that investigated quantitative relations between patient or caregiver factors and caregiver burden were included. The overall quality of evidence for factors was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach.
Results:
A total of 25 articles were included. High quality of evidence was found for the relation between caregiver burden and the factor “behavioral impairments.” Moderate quality of evidence was found for the relations between caregiver burden and the factors “feelings of depression” of the caregiver and “physical functioning” of the patient. The remaining rated caregiver factors—“feelings of anxiety,” “distress,” “social support,” “family functioning,” and “age”—and patient factors—“bulbar function,” “motor function,” “respiratory function,” “disease duration,” “disinhibition,” “executive functioning,” “cognitive functioning,” “feelings of depression,” and “age”—showed low to very low quality of evidence for their association with caregiver burden.
Conclusion:
Higher caregiver burden is associated with greater behavioral and physical impairment of the patient and with more depressive feelings of the caregiver. This knowledge enables the identification of caregivers at risk for caregiver burden and guides the development of interventions to diminish caregiver burden.
Full text
Available for:
NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
To explore the experiences of patients at risk for cardiovascular disease in primary care with the Activate intervention in relation to their success in increasing their physical activity.
A ...convergent mixed methods study was conducted, parallel to a cluster-randomised controlled trial in primary care, using a questionnaire and semi-structured interviews. Questionnaires from 67 patients were analysed, and semi-structured interviews of 22 patients were thematically analysed. Experiences of patients who had objectively increased their physical activity (responders) were compared to those who had not (non-responders). Objective success was analysed in relation to self-perceived success.
The questionnaire and interview data corresponded, and no substantial differences among responders and non-responders emerged. Participating in the intervention increased patients' awareness of their physical activity and their physical activity level. Key components of the intervention were the subsequent support of nurses with whom patients' have a trustful relationship and the use of self-monitoring tools. Patients highly valued jointly setting goals, planning actions, receiving feedback and review on their goal attainment and jointly solving problems. Nurses' support, the use of self-monitoring tools, and involving others incentivised patients to increase their physical activity. Internal circumstances and external circumstances challenged patients' engagement in increasing and maintaining their physical activity.
Patients experienced the Activate intervention as valuable to increase and maintain their physical activity, irrespective of their objective change in physical activity. The findings enable the understanding of the effectiveness of the intervention and implementation in primary care.
ClinicalTrials.gov NCT02725203.
Full text
Available for:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
To systematically identify and appraise evidence on associations between psychological factors (moods, beliefs, personality) and Health-related QoL (HRQoL) and/or global QoL in patients with ...Amyotrophic Lateral Sclerosis (ALS).
A systematic review was conducted in several online databases (PsycINFO, EMBASE, PubMed and CINAHL) up to October 2015. Articles were included if they reported associations between psychological factors (moods, beliefs and personality) and HRQoL and/or global QoL in an ALS population. The search was limited to empirical studies, published in English, which provided quantitative data. The methodological quality of the included articles was assessed.
In total, 22 studies were included. Mood was investigated in 14 studies, beliefs in 11 studies and personality in one study. Fifteen different psychological factors were extracted and assessed using 24 different measures. Twelve different QoL measures were used in the selected studies, subdivided into seven different HRQoL measures and five different global QoL measures. Higher levels of anxiety and depression appeared to be related to a poorer HRQoL, whereas a higher level of religiosity seemed to be associated with better global QoL. No conclusive associations were found for confusion-bewilderment (mood), spirituality, mindfulness, coping styles, hopelessness, perception of burden, cognitive appraisal (beliefs), neuroticism, extraversion, openness, agreeableness and conscientiousness (personality), due to insufficient or inconsistent evidence. Religiosity and spirituality appeared to become more positively associated over time.
Our results suggest that higher levels of anxiety and depression are related to a poorer HRQoL, whereas higher levels of religiosity appeared to be related to better global QoL. Associations might change during the disease course. This review supports the importance of psychological factors with regard to ALS care. Further research is needed to supplement the available evidence and to investigate how psychological factors can be modified to improve QoL.
PROSPERO 2015:CRD42015027303.
Full text
Available for:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
The amyotrophic lateral sclerosis functional rating scale-revised (ALSFRS-R) is a widely used primary outcome measure in amyotrophic lateral sclerosis (ALS) clinical practice and clinical trials. ...ALSFRS-R items cannot, however, validly be summed to obtain a total score, but constitute domain scores reflecting a profile of disease severity. Currently, there are different measurement models for estimating domain scores. The objective of the present study is, therefore, to derive the measurement model that best fits the data for a valid and uniform estimation of ALSFRS-R domain scores. Data from 1556 patients with ALS were obtained from a population-based register in The Netherlands. A random split of the sample provided a calibration and validation set. Measurement models of the ALSFRS-R were investigated using both exploratory factor analyses and confirmatory factor analyses. The measurement model with a four-factor structure (i.e., bulbar, fine motor, gross motor, and respiratory function), with correlated factors and cross-loading items on dressing and hygiene and turning in bed and adjusting bed clothes on both motor function scales, provided the best fit to the data in both sets. Correlation between factors ranged from weak to modest, confirming that the ALSFRS-R constitutes a profile of four clinically relevant domain scores rather than a total score that expresses disease severity. The internal consistency of the four domain scores was satisfactory. Our revision of the measurement model may allow for a more adequate estimation of disease severity and disease progression in epidemiological studies and clinical trials.
Full text
Available for:
EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Cognitive and behavioural changes within the spectrum of frontotemporal dementia (FTD) are observed frequently in patients with amyotrophic lateral sclerosis (ALS). Whether these changes also occur ...in other forms of motor neuron disease (MND) is not well studied. We therefore systemically screened a large cohort of patients with primary lateral sclerosis (PLS) and progressive muscular atrophy (PMA) for cognitive and behavioural changes, and subsequently compared our findings with a cohort of patients with ALS.
Using a set of screening instruments (Edinburgh Cognitive and Behavioural ALS Screen, ALS and Frontotemporal Dementia Questionnaire, Frontal Assessment Battery, and Hospital Anxiety and Depression Scale), the presence of cognitive and behavioural changes as well as anxiety and depression in 277 patients with ALS, 75 patients with PLS and 143 patients with PMA was evaluated retrospectively.
We found a high frequency of cognitive and behavioural abnormalities with similar profiles in all three groups. Subjects with behavioural variant FTD were identified in all groups.
The percentage of patients with PLS and PMA with cognitive dysfunction was similar to patients with ALS, emphasising the importance for cognitive screening as part of routine clinical care in all three patient groups. With a similar cognitive profile, in line with genetic and clinical overlap between the MNDs, the view of PLS as an MND exclusively affecting upper motor neurons and PMA exclusively affecting lower motor neurons cannot be held. Therefore, our findings are in contrast to the recently revised El Escorial criteria of 2015, where PLS and PMA are described as restricted phenotypes. Our study favours a view of PLS and PMA as multidomain diseases similar to ALS.
Objective: To evaluate whether a blended (face-to-face and online) psychosocial support program for caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy ...(PMA), aimed at enhancing feeling of control over caregiving, reduces psychological distress. Methods: A randomized controlled trial using a wait-list control design was conducted. Caregiver-patient dyads were randomly assigned to either the support program (n = 74) or to a wait-list control group (n = 74). The support program, based on Acceptance and Commitment Therapy, consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. Participants filled in questionnaires at baseline, 3 and 6 months. Caregivers' feeling of control over caregiving was assessed using two self-efficacy measures. Primary outcome was caregivers' psychological distress. Secondary outcomes included caregiver burden, caregiver quality of life and patients' quality of life and psychological distress. Intention-to-treat and per-protocol analyses were performed using linear mixed models. Results: The support program had no effect on the primary or secondary outcomes, despite a significant positive effect on the intervening variable self-efficacy with regard to control over thoughts. Almost half of the caregivers did not complete the intervention with the most frequently reported reason being lack of time. Caregivers who completed the intervention evaluated the support program positively. Conclusions: The support program did not reduce distress of partners of patients with ALS/PMA but may be beneficial by increasing feeling of control over the caregiving situation. The high level of intervention drop outs may have limited the ability to detect an intervention effect.
Trial registration: Netherlands Trial Registry NTR5734, registered 28 March 2016.
Full text
Available for:
DOBA, IJS, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Abstract
Introduction:
Pain neuroscience education is part of interdisciplinary pain management programs (IPMPs). To date, the role of health literacy on patients' understanding of pain neuroscience ...education has not sufficiently been examined.
Objectives:
Drawing on interviews with patients with diverse levels of health literacy, this article explores patient perspectives on pain neuroscience education.
Methods:
Purposively sampled patients from an IPMP were interviewed twice (waiting list and after 4 weeks). A directed qualitative content analysis was performed with the Integrated Conceptual Model of Health Literacy as an analytic framework.
Results:
Thirteen patients with chronic musculoskeletal pain were interviewed: 4 men and 9 women aged from 21 to 77 years with diverse educational and mostly low health literacy. One participant dropped out after baseline. Some participants gained access to health information actively; others relied on the expertise of their healthcare providers. Most participants did not seem to receive the information in the pain neuroscience education as intended, experienced difficulties with understanding the message, negatively appraised the information, and were not able to apply this in their daily lives. Health literacy levels likely played a role in this.
Conclusions:
Pain neuroscience education tailored to patients' health literacy levels, information needs, and learning strategies is needed.
Fatigue is a major problem of cancer patients. Thirty percent of cancer survivors report serious fatigue three years after finishing treatment. There is evidence that physical exercise during cancer ...treatment reduces fatigue. This may also lead to an improvement of quality of life. Such findings may result in a decrease of healthcare related expenditures and societal costs due to sick leave. However, no studies are known that investigated these hypotheses. Therefore, the primary aim of our study is to assess the effect of exercise during cancer treatment on reducing complaints of fatigue and on reducing health service utilisation and sick leave.
The Physical Activity during Cancer Treatment study is a multicentre randomised controlled trial in 150 breast and 150 colon cancer patients undergoing cancer treatment. Participants will be randomised to an exercise or a control group. In addition to the usual care, the exercise group will participate in an 18-week supervised group exercise programme. The control group will be asked to maintain their habitual physical activity pattern. Study endpoints will be assessed after 18 weeks (short term) and after 9 months (long term). Validated questionnaires will be used.
fatigue (Multidimensional Fatigue Inventory and Fatigue Quality List) and cost-effectiveness, health service utilisation and sick leave. Secondary outcome: health related quality of life (European Organisation Research and Treatment of Cancer-Quality of Life questionnaire-C30, Short Form 36 healthy survey), impact on functioning and autonomy (Impact on functioning and autonomy questionnaire), anxiety and depression (Hospital Anxiety and Depression Scale), physical fitness (aerobic peak capacity, muscle strength), body composition and cognitive-behavioural aspects. To register health service utilisation and sick leave, participants will keep diaries including the EuroQuol-5D. Physical activity level will be measured using the Short Questionnaire to Assess Health-Enhancing Physical Activity and will be monitored with an exercise log and a pedometer.
This study investigates the (cost)-effectiveness of exercise during adjuvant treatment of patients with breast or colon cancer. If early physical exercise proves to be (cost) effective, establishing standardised physical exercise programmes during cancer treatment will be planned.
Current Controlled trials ISRCTN43801571, Dutch Trial Register NTR2138.
Full text
Available for:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Aim
To gain insight into parents’ perspectives about their decision‐making process concerning nusinersen treatment for their child, including perceived needs and concerns, and to explore factors that ...influence this process.
Method
This was an exploratory qualitative interview study among parents of children with spinal muscular atrophy types 1 to 3. Data were analysed using inductive thematic analysis.
Results
Nineteen parents of 16 children representing 13 families participated. A wide variety of perspectives was reported ranging from a biomedical approach, which focused on battling the disease, to a holistic approach, which aimed for a good quality of life for their child. The most important factors that helped parents to decide were honest and neutral communication with their physician and access to available information.
Interpretation
It is important physicians understand that there are different perspectives influencing the decision‐making process. Physicians should create an environment that allows parents to accept or reject treatment by communicating honestly and openly with them and by discussing both options extensively. Clear information about pros and cons, recent developments in research, and the experiences of other parents should be made available to enable parents to make an informed decision.
What this paper adds
Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.
Parents’ perspectives varied from battling the disease to preserving quality of life.
Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.
Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.
Clear and honest information facilitated the alignment of values and goals.
What this paper adds
Parents perceived different needs and concerns about nusinersen treatment, which emphasized individual differences.
Parents’ perspectives varied from battling the disease to preserving quality of life.
Life expectancy, stopping deterioration, and improving quality of life were the perceived benefits of nusinersen treatment.
Open communication about the pros and cons of treatment with clinicians facilitated decision‐making.
Clear and honest information facilitated the alignment of values and goals.
Full text
Available for:
BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
PDF
