Needs assessment in patients with inflammatory bowel disease in the encounter and communication with healthcare professionals: A fieldwork study.

AIM: To explore how patients with Inflammatory bowel disease experienced encounters with healthcare professionals in two gastrointestinal outpatient clinics to demonstrate what matters in the communication between patients and healthcare professionals. DESIGN: This fieldwork study is part of a larger study developing an application for patients with inflammatory bowel disease in a framework inspired by Participatory Design. Participatory design consists of three phases and this study focused on the first phase, needs assessment. A phenomenological hermeneutic approach and qualitative methods were applied to obtain an understanding of patients' needs. METHODS: Three weeks of participant observations and three focus groups with 14 subjects were conducted at two university hospitals in Denmark. Field notes and interview transcripts were analysed using condensation of meaning and interpreted based on interactional nursing practice theory. The reporting method adhered to the EQUATOR guideline: COREQ. RESULTS: Four themes emerged: Easy and dependable access to healthcare professionals. Predictability of follow-up appointments. Importance of privacy during patient exams and Quality of time spent with healthcare professionals. CONCLUSION: Easy, dependable access, privacy, presence and predictability of follow-up appointments were important to patients with Inflammatory Bowel Disease. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: In communication with patients with inflammatory bowel disease, healthcare professionals must be aware of privacy and the importance of predictable follow-up agreements. They must be aware that presence and easy, reliable access positively affect patients' self-care skills. PATIENT CONTRIBUTION: This study is part of a larger project based on Participatory design involving patients and healthcare professionals in the development of technology to support communication.

Symptoms of total pain experienced by older people with advanced gastrointestinal cancer receiving palliative chemotherapy.

OBJECTIVE: Little is known about concurrent physical, psychological, social and spiritual distress experienced by older patients during early stages of advanced cancer while receiving life-prolonging treatment. Drawing on the concept of total pain, this study explored the multi-faceted symptoms of pain in older patients with advanced gastrointestinal cancer while receiving palliative chemotherapy. METHODS: A total of 14 in-depth interviews with seven participants were conducted, one interview at the beginning and one after completion of chemotherapy. Participants were ≥70 years, diagnosed with advanced gastrointestinal cancer and receiving palliative chemotherapy. RESULTS: Thematic analysis revealed four themes: variability and inevitability of physical pain, ways of coping with psychological pain, mitigating social pain through contributions to social life and the anticipation of existential pain in old age. Conducting two interviews with each participant foregrounded the changing nature of the participants' experienced symptoms and life perspectives while receiving palliative chemotherapy. Further, old age was experienced as integral to how participants described their situation and indicated an acceptance of old age. CONCLUSION: Older adults with advanced cancer are affected by multiple-faceted symptoms resulting from cancer and its treatment. The concept of total pain is suggested to guide interdisciplinary palliative care in earlier stages of advanced cancer.

Transformations of practice in online exercise training for patients with COPD led by physiotherapists - a qualitative study.

PURPOSE: The aim of this study was to characterize the practice of telemediated training for patients with very severe Chronic Obstructive Pulmonary Disease (COPD) and to inform the development of clinical/professional practice. METHODS: Inspired by ethnographic methodology, participating observation, informal and formal interviews were conducted with patients (11), their partners (4), and physiotherapists (6) at sites where the telemediated training was practiced. Postphenomenology was used as theoretical and analytical framework. RESULTS: Telemediated training in the homes of the patients takes place where most daily activities happen, and together with activities in the rehabilitation units they are included in the training in a reduced or amplified version that may compromise the privacy of the patients. The mediated image and sound challenge the training and communication activities and the possibility for the physiotherapists to estimate the condition of the patients. Consequently, the physiotherapists lower how much they push the patients in the exercises. CONCLUSIONS: Making training accessible to very severely ill patients with COPD through homebased telemediation comes with several trade-offs. This study can be used to educate clinical practice before and during the practicing of telemediated services, which need to be organized in a way that allows continuous adjustment.IMPLICATIONS FOR PRACTICEThe technology itself is not a neutral device in online health care provision. Health professionals should therefore:Play an active role in structuring the content, communication, and inclusion of the patients' context during online health care provision.Receive training in how to spot ways in which online health care provision transforms traditional practice and to how to work around its limitations.Organize online health care practices in ways that allow for continuous adjustment (for which they need back up from management).

Frailty screening for predicting rapid functional decline, rapid progressive disease, and shorter overall survival in older patients with gastrointestinal cancer receiving palliative chemotherapy - a prospective, clinical study.

OBJECTIVES: A growing number of older patients with cancer require well-founded clinical decision-making. Frailty screening is suggested as a service to improve outcomes in vulnerable older patients with cancer. This prospective study examined the value of frailty screening to predict rapid functional decline, rapid progressive disease (PD) and shorter overall survival (OS) in older patients with gastrointestinal cancer receiving palliative chemotherapy. MATERIALS AND METHODS: Patients aged ≥70 years were screened for frailty in an oncologic department after clinical decision but before starting palliative chemotherapy. Screening was repeated at first response evaluation after approximately two months of chemotherapy. Frailty screening tools included performance status (PS), Charlson Comorbidity Index, G-8 using two different cut-offs (G814,G811), VES-13, Timed-Up-and-Go, Handgrip strength and falls. RESULTS: A total of 170 patients were included, median age was 75.5 (70-88) years and 65.9% were male. The frequency of frailty varied from 14% to 74% according to the chosen frailty tool. In multivariate analysis G814 predicted OS (HR 1.5; 95%CI 1.0-2.4), whereas G811 predicted PD (OR 2.4; 1.1-5.6) and OS (HR 2.1; 1.4-2.9). VES-13 predicted functional decline (OR 3.5; 1.0-11.6), PD (OR 3.5; 1.5-8.4) and OS (HR 1.7; 1.2-2.4). Timed-Up-and-Go predicted OS (HR 1.8; 1.1-2.7). Handgrip strength and falls predicted functional decline (OR 4.5; 1.1-19 and OR 6.1; 1.4-25.8, respectively). PS predicted PD (OR 6.2; 2.6-14.7) and OS (HR 2.2; 1.5-3.2). CONCLUSION: VES-13 was useful for predicting all three endpoints of interest. Frailty tools covering domains of functioning and nutrition are suggested for older patients with advanced gastrointestinal cancer.

Hemispheric tumor location and the impact on health-related quality of life, symptomatology, and functional performance outcomes in patients with glioma: an exploratory cross-sectional study.

PURPOSE: To inform high-quality rehabilitation services, this study investigates if patients with glioma located in the right- or left-hemisphere present with different health-related quality of life, symptomatology, and functional performance in the early disease state. MATERIAL AND METHODS: Between 2013 and 2017, 81 adult patients were assessed during the first week of chemo-radiation, following resection. Patients were stratified into two groups depending on a right- or left-hemispheric lesion. Independent t-tests analyzed potential differences regarding health-related quality of life, symptomatology, and functional performance. RESULTS: Forty-five patients (56%) had a tumor located in the right hemisphere, whereas 36 patients (44%) had a tumor in the left hemisphere. Except for more patients with tumors in the left hemisphere having their tumor located in eloquent brain areas, the groups were well matched. No group differences were found in health-related quality of life. Group differences were found in communication deficits (Δ-10.9, 95%CI -19.1; -2.3, p = 0.01), which were more frequent in patients with left-sided lesions, and of headaches (Δ13.9, 95%CI 1.8; 25.9, p = 0.02), which were more frequent in patients with right-hemispheric lesions, who also had significantly greater difficulties with process-skills when performing everyday life tasks (Δ-0.3, 95%CI -0.5; -0.1, p < 0.01). Also, weak evidence suggests that patients with Glioblastoma Multiforme located in the right hemisphere are more affected by fatigue compared to their left-hemispheric comparisons (Δ14.6, 95%CI 0.19; 29.0, p < 0.05). CONCLUSIONS: The hemispheric location of a glial-cell brain tumor has no consequence for health-related quality of life at the beginning of chemo-radiation treatments. However, findings of tumor-location dependent conditions of communication, headache, patients' ability to perform executive functions, and fatigue should be considered in rehabilitation situations when designing an intervention to potentially improve executive functions and relieve the symptoms.Implications for rehabilitationIt is unclear if laterality impact glioma patients health-related quality of life and functional performance, which might implicate differentiated rehabilitation interventions.The hemispheric location of a glial-cell brain tumor has no consequence for the health-related quality of life at the beginning of chemo-radiation, following surgery.Tumor-location dependent conditions of communication, headache, fatigue, and patients' ability to perform executive functions should be considered when designing an intervention to improve executive functions and symptom-relieve.In rehabilitation interventions, tumor laterality is not a factor that needs to be considered before recommending aerobic training to improve the functional capacity of patients with glioma.

Healthcare Utilization After Stroke: A 1-Year Prospective Study.

OBJECTIVES: This study was undertaken to investigate the predictive value of disease-related factors, contextual factors, and functioning on the use of healthcare for 1 year after stroke. DESIGN: A prospective study. SETTING AND PARTICIPANTS: In total, 219 patients with stroke admitted to a hospital stroke unit were included. METHODS: Data were obtained through medical records, structured interviews, and assessments. Multivariable regression analyses were used to explore the association between the independent variables (stroke severity, comorbidity, age, sex, civil status, private financing, sense of coherence, cognitive function, walking ability, social everyday activities prestroke, and recent fall) and the use of inpatient or outpatient care 0 to 3, 3 to 6 and 6 to 12 months after stroke. RESULTS: Mean age of the participants was 70 years, 43% were women, and 71% experienced mild stroke severity. All participants received inpatient care at 0 to 3 months, about one-fifth used inpatient care at 3 to 6 or 6 to 12 months, and all received outpatient care all 3 time periods. Moderate-severe stroke (P < .001), a lower age (P = .002), and walking disability (P < .001) were associated with a higher use of inpatient care 0 to 3 months after stroke. Living alone (P = .025) and recent fall (P = .05) were associated with a higher use of inpatient care 3 to 6 months after stroke. None of the independent variables were associated with use of inpatient care 6 to 12 months. Moderate-severe stroke (0-3; 3-6 months: P < .001, 6-12 months: P = .004), a lower age (0-3 months: P = .002, 3-6 months: P = .001, 6-12 months: P = .006), and walking disability (P < .001) were associated with a higher use of outpatient care in all 3 time periods. CONCLUSIONS AND IMPLICATIONS: Moderate-severe stroke, lower age, and walking disability are important predictors of healthcare utilization after stroke. The findings inform efforts to identify and support people with stroke who have the potential for high healthcare utilization in the year post stroke.

Physical function in patients newly diagnosed with multiple myeloma; a Danish cohort study.

BACKGROUND: Multiple myeloma is a cancer in the bone marrow causing bone destruction. Patients experience various symptoms related to the disease and/or treatment, such as pain and fatigue, leading to poorer quality of life. The symptom burden might affect physical function and physical activity levels, posing a risk of physical deterioration. The aim was to investigate whether physical function in newly diagnosed patients with multiple myeloma differs from the reference values of the normal population and other cancer patients. METHODS: The study is a cross sectional descriptive analysis of a prospective cohort of 100 patients newly diagnosed with multiple myeloma. Four physical function tests were carried out; Six-Minute-Walk-Test, Sit-to-Stand-Test, grip strength and knee extension strength. Age and gender specific results of physical function from the multiple myeloma population were compared to normative data and to data from other cancer populations. RESULTS: Of the 100 patients included, 73% had bone disease and 55% received pain relieving medicine. Mean age was 67.7 years (SD 10.3). Patients with multiple myeloma had significantly poorer physical function compared to normative data, both regarding aerobic capacity and muscle strength, although not grip strength. No differences in physical function were found between patients with multiple myeloma and other cancer populations. CONCLUSIONS: Physical function in newly diagnosed Danish patients with multiple myeloma is lower than in the normal population. Exercise intervention studies are warranted to explore the value of physical exercise on physical function. TRIAL REGISTRATION: ClinicalTrials.gov, ID NCT02439112, registered 8 May 2015.

Effectiveness of Physical Therapy- and Occupational Therapy-Based Rehabilitation in People Who Have Glioma and Are Undergoing Active Anticancer Treatment: Single-Blind, Randomized Controlled Trial.

BACKGROUND: It is recommended that people with gliomas engage in rehabilitation, but high-quality evidence to support this recommendation is lacking. OBJECTIVE: This study assesses the effectiveness of a physical therapy- and occupational therapy-based rehabilitation intervention compared with usual rehabilitation care for quality of life (QoL) during active anticancer treatment. DESIGN: This study was a randomized controlled trial. SETTING: The study took place in Odense University Hospital, Denmark. PARTICIPANTS: The trial included people with gliomas who were functionally independent. INTERVENTION: The participants were randomly assigned to a supervised rehabilitation intervention or usual rehabilitation care during the active anticancer period. The supervised rehabilitation included physical therapy and occupational therapy-based interventions. MEASUREMENTS: The primary outcome was the between-group difference in the overall QoL from baseline to the 6-week follow-up. It was self-rated with the global health status (GHS)/QoL domains from the European Organization for Research and Treatment of Cancer Questionnaire. Eighty-eight participants per group were required to find a 10% between-group difference from baseline to the 6-week follow-up. Secondary outcomes were the health-related QoL domains, symptomatology, and functional performance. RESULTS: A total of 64 participants were included (32 in the intervention group and 32 in the control group). At follow-up, the intervention group self-rated a nonsignificantly better score for GHS/QoL than the control group (adjusted mean difference = 8.7% [95% confidence interval = -4.36 to 21.79]). Compared with the control group, the intervention group had consistently better results on self-rated secondary outcomes, including cognitive functioning (ß = 16.2) and fatigue (ß = -13.4), and objectively measured aerobic power (ß = 2.6). LIMITATIONS: The number of participants and duration of follow-up were inadequate to determine if the intervention was superior to the current usual rehabilitation care. CONCLUSIONS: The physical therapy- and occupational therapy-based rehabilitation intervention did not affect GHS/QoL. However, the trial found promising significant effects on both objective and self-reported secondary outcomes, making rehabilitation efforts during active anticancer treatment promising.

Supervised and home-based physical exercise in patients newly diagnosed with multiple myeloma-a randomized controlled feasibility study.

BACKGROUND: The study evaluated the feasibility and safety of the exercise intervention and physical test procedures of our ongoing randomized controlled trial, examining the effect of physical exercise in newly diagnosed patients with multiple myeloma. METHODS: Patients are randomized 1:1 to a control group (usual care) or an intervention group (usual care and exercise) by block randomization with stratification of planned treatment, WHO performance status, and study site. The exercise intervention consists of eight supervised exercise sessions combined with home-based exercise over a 10-week period. Bone disease is systematically evaluated to determine limitations regarding physical testing and/or exercise. Feasibility outcome measures were study eligibility, acceptance, and attrition, and furthermore attendance, adherence, tolerability, and safety to the exercise intervention. Additionally, test completion, pain, and adverse events during the physical test procedures were evaluated. Outcome assessors were blinded to allocation. RESULTS: Of 49 patients screened, 30 were included. The median age was 69 years, range 38-90, 77% were males, and 67% had bone disease. Study eligibility was 82%, acceptance 75%, and attrition 20%. Attendance at supervised exercise sessions was 92%, and adherence to supervised exercise sessions and home-based exercise sessions was 99% and 89%, respectively. No serious adverse events attributed to exercise or physical tests were reported. All patients completed the physical tests, except for two patients, where physical test procedures were modified due to bone disease. DISCUSSION: The exercise intervention and physical test procedures were feasible and safe in patients with multiple myeloma, even in older patients with multiple myeloma and in patients with myeloma bone disease. TRIAL REGISTRATION: ClinicalTrials.gov. ID NCT02439112. Registered on May 7, 2015.

Development of an exercise intervention as part of rehabilitation in a glioblastoma multiforme survivor during irradiation treatment: a case report.

INTRODUCTION: This case report describes the rationale and development of an exercise intervention in a patient with glioblastoma multiforme (GBM ) and discusses potential relations of observed effects in functional performance and quality of life (QOL). METHODS: A 54-year-old GBM survivor completed a supervised six-week exercise intervention during irradiation treatment beginning 42 d after resection. Exercise modalities of cardiorespiratory, resistance, and balance training were designed on generic recommendations of various cancer populations and literature review. RESULTS: Our case attended all possible sessions without experiencing adverse effects, and improved in aerobe power (24%), muscle strength (0-38%), standing balance (71%), walking ability (9%), and QOL domains of "Global Health Status/QoL" and "Physical functioning." CONCLUSIONS: Based on this single case, exercise rehabilitation has the ability to maintain or improve functional performance and QOL domains even during heavy treatments. It also implies that patients with GBM are capable and may be willing to participate in exercise rehabilitation if supervised by physical therapists. Implications for rehabilitation The use of exercise as part of rehabilitation still needs attention in strong methodology studies of patients with gliomas. Exercise rehabilitation may maintain or even improve functional performance and QOL domains during medical treatment regimens. Functional independent patients with GBM are capable to comply with generic exercise recommendations and may be willing to participate in exercise rehabilitation if supervised by physical therapists.

Physical, mental, and social functioning in women age 65 and above with and without a falls history: An observational case-control study.

OBJECTIVES: There is a lack of knowledge about how falls are associated with the older person's physical, mental, and social functioning which would help find effective methods for identifying rehabilitation needs in the older population to ensure appropriate follow-up. The aim was to investigate and compare functioning in women with and without a falls history. METHODS: This was an observational case-control study. Study participants were fallers aged ≥65 years recruited consecutively from a hospital; age matched randomly selected community controls (fallers without contact with the healthcare system due to falls and non-fallers). Fallers were classified as once only fallers and recurrent fallers. RESULTS: The sample constituted a group of older women with and without a falls history; 117 fallers from the Falls Clinic, and 99 fallers and 106 non-fallers community controls, median age 80 years. Both fallers from the clinic and the community had significantly lower functioning compared to non-fallers in all three domains. Recurrent fallers had poorer functioning compared to once only fallers. CONCLUSION: This study contributes to knowledge about older people's functioning and disability in conjunction with a high fall-risk and highlights the importance of rehabilitation and prevention strategies that focus on early identification of disability in the older population regardless of falls history.

A 12-week interdisciplinary rehabilitation trial in patients with gliomas - a feasibility study.

PURPOSE: This report aims to assess the safety and feasibility of using an interdisciplinary rehabilitation intervention for a future randomized controlled trial in patients with gliomas in the initial treatment phase. METHOD: We conducted an outpatient two-part rehabilitation intervention that involved six weeks of therapeutic supervised training (part one) and six weeks of unsupervised training in a local gym following a training protocol (part two). RESULTS: Predefined feasibility objectives of safety (100%), consent rate (>80%), drop-out (<20%), adherence (>80%) and patient satisfaction (>80%) was achieved at part one. However, the failure to meet predefined feasibility objectives of drop-out, adherence and patient satisfaction of the unsupervised intervention at part two have led to a protocol revision for a future randomized controlled trial. CONCLUSION: This study demonstrates that an intensive rehabilitation intervention of physical therapy and occupational therapy in the initial treatment phase of patients with gliomas whose Karnofsky performance status is ≥70 is safe and feasible, if relevant inclusion criteria and precautionary screening are made. With the revised protocol, we are confident that the foundation for conducting a successful randomized controlled trial among these vulnerable patients has been established. Implications for rehabilitation Brain tumors constitute some of the most challenging cancer diagnoses presenting for rehabilitation intervention. Patients with gliomas experiences limitations in physical functioning, cognition, and emotional wellbeing. In a relatively small sample this study shows that supervised physical- and occupational therapy in patients with gliomas is safe and feasible in the initial treatment phase. Patients with gliomas can potentially improve functioning through interdisciplinary rehabilitation.

Occurrence and Predictors of Falls in People With Stroke: Six-Year Prospective Study.

BACKGROUND AND PURPOSE: The purpose was to investigate the occurrence of self-reported falls in people with stroke at 3, 6, and 12 months and 6 years post stroke and predictors for falls during 6 years. METHODS: A prospective study involving 121 people with stroke. Data were obtained through structured interviews and assessments. Generalized estimating equation modeling using proportional odds was used to explore the predictive value of fall history, functioning/disability, and personal factors during 6 years. RESULTS: The proportion of fallers constituted of 35%, 26%, 33%, and 35% of the sample at 3, 6, and 12 months and 6 years of follow-up, respectively. Higher perceived effect of stroke on activities of daily living (odds ratio, 1.37; 95% confidence interval, 1.04-1.80), falls at 3 months (odds ratio, 1.0; 95% confidence interval, 1.01-3.94), and no gait/balance disability at baseline (odds ratio, 7.29; 95% confidence interval, 1.99-26.73) were predictors for future falls. During the 6 years, the odds for a fall decreased for participants with gait/balance disability at baseline but increased for those with no gait/balance disability. CONCLUSIONS: Results highlight the importance of performing fall risk evaluations over time among people with stroke, even when gait and balance functioning initially post stroke is good.