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Background There is inequal access to treatment and scarce evidence on how the disease burden in chronic intestinal failure (CIF) compares to other chronic nonmalignant types of organ failure. Therefore, we compared the health-related quality of life (HRQOL) of people with CIF with that of people with end-stage kidney disease (ESKD) receiving hemodialysis (HD). These groups were selected for comparison as they have similar treatment characteristics. We hypothesized that people treated with HD and people with CIF had similarly poor HRQOL. Methods HRQOL was evaluated and compared in a cross-sectional study of adult people with CIF and people with ESKD HD at a tertiary hospital in Denmark, using the Short-Form 36 (SF-36). Results One hundred forty-one people with CIF and 131 people with ESKD receiving HD were included in the analysis. Both groups reported low scores (<50) for HRQOL on general health, vitality, and role limitation—physical. People with ESKD receiving HD had significantly lower scores than people with CIF regarding physical functioning, general health, and vitality when adjusted for sex and age. No significant difference was found for any other SF-36 domain. Conclusion HRQOL was similarly and significantly reduced in people with CIF and in people with ESKD receiving HD. People with ESKD receiving HD had significantly poorer HRQOL than people with CIF in some aspects of physical and mental health. Access to home parenteral support treatment varies among countries that typically provide HD, suggesting an inequality in healthcare based on the type of organ failure., Background: There is inequal access to treatment and scarce evidence on how the disease burden in chronic intestinal failure (CIF) compares to other chronic nonmalignant types of organ failure. Therefore, we compared the health-related quality of life (HRQOL) of people with CIF with that of people with end-stage kidney disease (ESKD) receiving hemodialysis (HD). These groups were selected for comparison as they have similar treatment characteristics. We hypothesized that people treated with HD and people with CIF had similarly poor HRQOL. Methods: HRQOL was evaluated and compared in a cross-sectional study of adult people with CIF and people with ESKD HD at a tertiary hospital in Denmark, using the Short-Form 36 (SF-36). Results: One hundred forty-one people with CIF and 131 people with ESKD receiving HD were included in the analysis. Both groups reported low scores (<50) for HRQOL on general health, vitality, and role limitation—physical. People with ESKD receiving HD had significantly lower scores than people with CIF regarding physical functioning, general health, and vitality when adjusted for sex and age. No significant difference was found for any other SF-36 domain. Conclusion: HRQOL was similarly and significantly reduced in people with CIF and in people with ESKD receiving HD. People with ESKD receiving HD had significantly poorer HRQOL than people with CIF in some aspects of physical and mental health. Access to home parenteral support treatment varies among countries that typically provide HD, suggesting an inequality in healthcare based on the type of organ failure.

Objectives This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping. Methods Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019–2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping. Results The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001). Significance of results Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver’s health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden., ObjectivesThis study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping. MethodsThree cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019-2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with >= 18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping. ResultsThe 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001). Significance of resultsCaregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver's health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.

Introduction: An interdisciplinary team approach to patients in specialised palliative care is recommended; however, the composition of the professionals tends to vary, and the roles of physiotherapists and occupational therapists may be underestimated. We aimed to investigate patient-reported unmet needs, which potentially could benefit from physiotherapy and occupational therapy interventions in a specialised palliative care team. Methods: Adult patients with chronic advanced diseases referred to the Specialised Palliative Care Team at Copenhagen University Hospital, Rigshospitalet were enrolled in the study. The Three-Levels-of-Needs Questionnaire was used as primary outcome to assess symptom/problem intensity, symptom/problem burden and felt needs for 12 commonly reported symptoms/problems for patients referred to a specialised palliative care team. Furthermore, participants' level of distress, fatigue and physical activity, symptoms of anxiety and depression, and barriers towards the rehabilitation programme were registered with other measures. Results: In total, 43 of 67 (64%) patients participated. The majority of participants reported severe symptoms/problems concerning fatigue (81%), impaired physical activities (77%), carrying out work and daily activities (77%), pain (72%), and worries (58%). Furthermore, need for help was expressed concerning physical activities (79%), work and daily activities (77%), fatigue (70%), pain (65%), concentration (58%) and worries (51%). On average the patients characterised 6 (out of 12) symptoms/problems as severe. Conclusion: Patients referred to a specialised palliative care team reported extensive unmet needs concerning physical activities, work and daily activities, fatigue, pain, concentration and worries. Unmet needs that potentially could be alleviated by physiotherapists or occupational therapists implemented in the interdisciplinary team.

Patients with chronic kidney disease undergoing hemodialysis generally have a significant symptom burden, which may interfere with their quality of life. The aim of this study was to identify the prevalence of fatigue, pain, anxiety, and depression in patients on hemodialysis and analyze their co-occurrence. A cross-sectional study used self-reported measures. A total of 242 patients aged 18 years or older were initially screened; 141 were included in the study; 129 answered the questionnaires (response rate 91%). Preva lences were 24.8% had moderate to severe fatigue, 38.0% had pain, 32.6% had anxiety, and 29.5% had depression. The prevalence of coexistent moderate to severe symptoms ranged from 15.5% to 25.6%. Further research is needed to better understand the symptom burden and their co-occurrence in patients receiving hemodialysis., Patients with chronic kidney disease undergoing hemodialysis generally have a significant symptom burden, which may interfere with their quality of life. The aim of this study was to identify the prevalence of fatigue, pain, anxiety, and depression in patients on hemodialysis and analyze their co-occurrence. A cross-sectional study used self-reported measures. A total of 242 patients aged 18 years or older were initially screened; 141 were included in the study; 129 answered the questionnaires (response rate 91%). Preva lences were 24.8% had moderate to severe fatigue, 38.0% had pain, 32.6% had anxiety, and 29.5% had depression. The prevalence of coexistent moderate to severe symptoms ranged from 15.5% to 25.6%. Further research is needed to better understand the symptom burden and their co-occurrence in patients receiving hemodialysis.

Objectives: Patients with malignant diseases are known to have a high symptom burden including pain, and insufficient treatment of pain in this population has been frequently documented. To promote the integration of specialized palliative care and hematology and oncology, this study investigated disease, treatment, and comorbidity related symptoms as well as functional capacity and health-related quality of life (HQoL) by patient-reported outcome measures (PROMs) and clinician-reported outcome measures (ClinROs) among inpatients in a comprehensive cancer center. Methods: This cross-sectional study was carried out in a large comprehensive cancer centre of both oncological and hematological inpatients. It combined the use of PROMs and ClinROs. Results: A high symptom burden was reported with fatigue and appetite loss as the most frequent symptoms, and role function being the most impaired function. Further, a low HQoL score was associated with a high number of symptoms/impairments. More than half of all patients reported pain in the last 24 h. Out of 95 patients with average pain >0 in the last 24 h, 71% were treated with opioids and 24% were treated with adjuvant analgesic (AA) defined as antiepileptics, antidepressants and prednisolone. Out of 57 patients with average pain >0 in the last 24 h and possible neuropathic pain, 33% were treated with AAs. A high odds ratio for moderate/severe pain in patients with possible neuropathic pain mechanisms was observed. Conclusions and implications: This study did not only emphasize the need for systematic use of PROMs to identify symptoms and needs for inpatients, but also displayed why PROMs supported by ClinROs are a prerequisite to deliver truly individualized and high-quality patient-centered care. This study calls for continuous training of health care professionals to deliver high-quality treatment of pain. Further, it contributes to the growing recognition, that palliative care and standard care must be integr

Objective End-stage kidney disease and hemodialysis (HD) treatment are associated with a high symptom burden in many patients. This study aimed at updating patient-reported outcomes concerning quality of life, fatigue, anxiety, and depression in HD patients treated in a single center in order to assess the need for palliative care provision. Method A cross-sectional design, in which a sample of patients treated at a single HD department (Rigshospitalet, Denmark) between January and June 2019, was analyzed using the Kidney Disease Quality of Life Short Form, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. In addition, we compared the results with previously published data from the same department (2000) and with an age-and sex-matched sample from the Danish general population (1997/2014). Chi-square and t-tests were used for comparisons. Results Screened patients = 242, included = 141, analyzed = 131 (70.2% male, mean age = 61.3 years). HD patients reported low scores for quality of life, high scores for fatigue, and approximately 30% had anxiety/depression. Regarding quality of life, they had significantly lower scores on general health (P ≤ 0.000), vitality (P = 0.009), social functioning (P = 0.001), mental health (P = 0.007), and mental component (P = 0.005) compared with former data of HD patients. Moreover, they reported significantly poorer quality of life and worse fatigue compared with the general Danish population. Significance of results In the patients undergoing HD, quality of life was poor and worsened when compared with former HD patients' data. Additionally, fatigue, depression, and anxiety in HD patients were prevalent. A clear need for palliative care provision was observed.

(1) Background: The purpose of this article was to investigate the association between self-reported physical activity (PA) and all-cause mortality in ambulatory patients with chronic kidney disease (CKD), stage 4-5 including maintenance dialysis. (2) Methods: Ambulatory patients with CKD (eGFR <30 mL/min/1.73 m(2)) with conservative treatment or chronic dialysis were included. PA was assessed using the Saltin-Grimby Physical Activity Level Scale. A Cox proportional hazards regression model--adjusted for age, sex, plasma-albumin, body mass index, socioeconomic status, and treatment--was applied. (3) Results: Participants (n = 374) were followed 39 +/- 15 months from entry to death or censoring. Throughout the study period of 39 months, 156 deaths (42%) were registered. Regarding physical activity, 128 (34%) of the participants were inactive, 212 (57%) were moderately active, and 34 (9%) were highly or vigorously active. Moderate PA was associated with a decreased mortality risk in women (n = 150) compared to inactivity (HR 0.27 (0.15; 0.51), p <0.001), whereas a high/vigorous level of PA was not significantly associated with mortality risk compared to inactivity. In men (n = 224), the associations between PA levels and mortality risk were not significant. (4) Conclusions: Moderate PA was associated with reduced all-cause mortality in ambulatory women with stage 4-5 CKD with or without maintenance dialysis treatment. Physical activity was not significantly associated with mortality in men.

Background. Musculoskeletal pain has been reported as a clinical problem in patients with chronic kidney disease (CKD). The purpose of this study was to compare the frequency of musculoskeletal pain in patients with CKD and no mobility problems with a general population and to investigate the impact of pain on quality of life (QOL), physical activity and physical function. Methods. Patients with CKD Stages 4 and 5 with or without a dialysis treatment and no mobility problems were included. Musculoskeletal pain in the shoulder/neck, back/low back and limbs and level of physical activity were measured using the Danish Health and Morbidity Survey and coded into dichotomous answers. QOL and physical function were measured using the kidney disease QOL questionnaire and the 30-s chair stand test, respectively. Data for the general population were collected in national registers and adjusted for age, gender and region. Results. The patients (n ¼ 539) had a mean age of 66 [95% confidence interval (CI) 65-67] years, 62% were men and they were treated with haemodialysis (HD) (n ¼ 281), peritoneal dialysis (n ¼ 62) or without dialysis (n ¼ 196). The frequency of reported musculoskeletal pain in the patients did not exceed pain reported by the general population [e.g. pain in the limbs in patients undergoing HD versus a matched general population, 61% versus 63% (P ¼ 0.533), respectively]. Pain in all measured body sites was associated with reduced QOL [e.g. pain in the limbs associated with a physical component scale b of -8.2 (95% CI -10.3 to -6.0), P < 0.001]. Pain in the limbs was associated with a reduced number of repetitions in the 30-s chair stand test [mean -1.7 (95% CI -3.0 to -0.4), P ¼ 0.009]. Pain in the shoulder/neck was associated with reduced odds of being physically active [odds ratio 0.6 (95% CI 0.4 to 0.9); P ¼ 0.022]. Conclusions. Musculoskeletal pain was not more frequently reported by patients with CKD and no mobility problems compared with the gener

BACKGROUND: We investigated serum testosterone and insulin-like growth factor 1 (IGF-1) levels' associations with muscle fibre size and resistance training in male dialysis patients.METHODS: Male patients were included in a 16-week control period followed by 16 weeks of resistance training thrice weekly. Blood samples were obtained to analyse testosterone, luteinizing hormone (LH), IGF-1, and IGF-binding protein 3. Muscle fibres' size was analysed in biopsies from m. vastus lateralis.RESULTS: The patients' testosterone levels were within the normal range at baseline (n = 20) (19.5 (8.2-52.1) nmol/L versus 17.6 (16.1-18.0), resp.) whereas LH levels were higher (13.0 (5.5-82.8) U/L versus 4.3 (3.3-4.6), P < 0.001, resp.). IGF-1 and IGF-binding protein 3 levels were higher in the patients compared with reference values (203 (59-590) ng/mL versus 151 (128-276), P = 0.014, and 5045 (3370-9370) ng/mL versus 3244 (3020-3983), P < 0.001, resp.). All hormone levels and muscle fibre size (n = 12) remained stable throughout the study. Age-adjusted IGF-1 was associated with type 1 and 2 fibre sizes (P < 0.05).CONCLUSION: Patients' total testosterone values were normal due to markedly increased LH values, which suggest a compensated primary insufficiency of the testosterone producing Leydig cell. Even though testosterone values were normal, resistance training was not associated with muscle hypertrophy. This trial is registered with ISRCTN72099857.

Background. The aim of this study was to investigate IL-6 and 25-hydroxyvitamin D (25-OH D) associations with muscle size and muscle function in dialysis patients. Methods. Patients were included in a 16-week control period followed by 16 weeks of high-intensity resistance training thrice weekly. IL-6 and 25-OH D were analysed after an over-night fast. Muscle fibre size was analysed in biopsies from m. vastus lateralis. Muscle power was tested using a Leg Extensor Power Rig. Results. Patients (n = 36) with IL-6 ≥ 6.49 pg/ml (median) were older and had decreased muscle power and a reduced protein intake (P < 0.05) compared with patients with IL-6 < 6.49 pg/ml. IL-6 was not associated with muscle fibre size. Vitamin D deficiency (25-OH D < 50 nmol/l) was present in 51% of the patients and not associated with muscle power. IL-6 remained unchanged during the training period, whilst muscle power increased by 20-23% (P < 0.001). Conclusion. Elevated IL-6 values were associated with decreased muscle power but not with decreased muscle fibre size. Half of the patients were suffering from vitamin D deficiency, which was not associated with muscle power. IL-6 was unchanged by high-intensity resistance training in dialysis patients in this study.

Background/Aims: The aim of this controlled study was to investigate the effect of high-load strength training on glucose tolerance in patients undergoing dialysis. Methods: 23 patients treated by dialysis underwent a 16-week control period followed by 16 weeks of strength training three times a week. Muscle fiber size, composition and capillary density were analyzed in biopsies obtained in the vastus lateralis muscle. Glucose tolerance and the insulin response were measured by a 2-hour oral glucose tolerance test. Results: All outcome measures remained unchanged during the control period. After strength training the relative area of type 2X fibers was decreased. Muscle fiber size and capillary density remained unchanged. After the strength training, insulin concentrations were significantly lower in patients with impaired glucose tolerance or type 2 diabetes (n = 14) (fasting insulin from 68 ± 12 (46-96) to 54 ± 10 (37-77) pmol/l, p <0.05, 2-hour insulin from 533 ± 104 (356-776) to 344 ± 68 (226-510) pmol/l, p <0.05, total insulin area under the curve from 1,868 ± 334 (1,268-2,536) to 1,465 ± 222 (1,094-1,913), p <0.05). Insulin concentrations were unchanged in patients with normal glucose tolerance (n = 9). Conclusion: The conducted strength training was associated with a significant improvement in glucose tolerance in patients with impaired glucose tolerance or type 2 diabetes undergoing dialysis. The effect was apparently not associated with muscle hypertrophy, whereas the muscle fiber type composition was changed.