Needs and preferences among patients with high-grade glioma and their caregivers - A longitudinal mixed methods study.

Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management.

Health-related quality of life in patients with high-grade gliomas: a quantitative longitudinal study.

The diagnosis of a high-grade glioma usual is followed by functional impairment(s), cognitive decline and an impaired psycho-social well-being. This might well have a significant and negative impact on the health related quality of life. The purpose of this study was to explore physical activity levels, prevalence and severity of anxiety and depressive symptoms and health-related quality of life among patients with a highgrade glioma. This paper is based on a longitudinal mixed methods study. Patients (n = 30) completed questionnaires at 5 time points from time of diagnosis until the final follow-up after 1 year. Scores of Karnofsky Performance Status (KPS), physical activity, anxiety and depression and health-related quality of life (FACT-Br) are obtained. Patients' physical activity level and KPS decrease during the disease- and treatment trajectory. The majority of patients did not report any depressive symptoms, eight individuals (26.7 %) being depressed at various time points. Among a sub-group of participants who completed all study requirements for the entire study period the level of anxiety decreased significantly during the study. The FACT-Br sub-scale of emotional well-being increased significant, indicating a better HRQOL attend of followup. The diagnosis of a HGG leads to an ongoing functional decline measured as a decline of the KPS and a reduced physical activity during leisure time. Supportive care combined with rehabilitative and palliative approaches might well be valuable along the trajectory especially during the post-surgery period when anxiety is at its highest peak.

Experiences and perspectives of patients and clinicians in nurse-led clinics in an oncological setting: A sequential multi-methods study.

PURPOSE: The aim is to explore patient satisfaction with nurse-led consultations and the health care professionals' experiences on the expanded scope of nursing practice. METHODS: A sequential multi-methods study is comprised of a study-specific questionnaire to patients with gynecological- or breast cancer followed by a survey among the involved physicians. Finally, two focus group interviews explored the perspectives of clinical nurse specialists. RESULTS: Study participants were patients (n = 109), physicians (n = 12) and clinical nurse specialists (n = 10). Patients expressed that their concerns and questions were addressed, and even sensitive and very personal issues were discussed. They reported that they were able to follow self-management strategies to cope with side effects (89.8%) and emotional reactions (68.8%). The clinical nurse specialists described how they sought to embrace a person-centred approach in the consultations. The expanded scope of nursing practice resulted in enhanced feelings of professionalism. The physicians appreciated the clinical nurse specialists' skills and competencies and were comfortable referring patients to nurse-led consultations. CONCLUSIONS: Nurse-led consultations are in a pivotal position to establish a culture for person-centred nursing practice. We recommend developing a strategy for implementation of nurse-led consultations and to clarify and align expectations between the involved. Nurse-led consultations have the potential to offer quality-of-care and increase clinical nurse specialists' professional identity and job satisfaction.

Pilot study of a multimodal intervention: mixed-type exercise and psychoeducation in patients undergoing allogeneic stem cell transplantation.

Substantial physical and functional deconditioning and diminished psychological wellbeing are all potential adverse effects of allogeneic stem cell transplantation (allo-HSCT). The aim of this study was to evaluate the feasibility, safety and benefits (physical and functional capacity) of a 4-6 week supervised and structured mixed-type exercise, progressive relaxation and psychoeducation programme in patients undergoing allo-HSCT. Nineteen patients were randomized to an intervention or a conventional care group (CC) and were tested for physical and functional capacity before admission and upon hospital discharge. In all, 14 patients completed all study requirements (74%) and no adverse reactions that could be attributed to the intervention were observed. At the time of discharge, the intervention group showed significant improvements in several muscle strength scores as compared to the CC group; chest press (P=0.023), leg extension (P=0.007) and isometric right knee flexor (P=0.033). The intervention proved feasible, safe and well tolerated in this small sample of patients undergoing allo-HSCT. An intervention of this type may be a useful strategy for maintaining or improving muscle strength, and minimizing loss of physical and functional capacity in patients undergoing allo-HSCT.

Controlled rehabilitative and supportive care intervention trials in patients with high-grade gliomas and their caregivers: a systematic review.

BACKGROUND: Patients diagnosed with high-grade gliomas experience a varying and complex symptom burden, and face a high mortality rate. As a consequence, patients with high-grade gliomas and their caregivers have imminent and changing rehabilitative and supportive care needs. OBJECTIVES: To give a detailed overview of non-pharmacological rehabilitative and supportive care interventions for patients with high-grade gliomas and/or their caregivers, and provide an appraisal of the methodological quality of these studies. METHOD: PubMed, Cumulative Index of Nursing and Allied Health Literature and Embase were searched for literature published from 1995 to May 2013. Data from eight studies were reviewed for substantive methods and results. Methodological quality was described and assessed using the scoring system for appraising mixed methods research and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed study reviews. RESULTS: The search yielded 914 unique publications, of which 9 were classified eligible for this review. There is preliminary evidence that cognitive group therapy improves memory skills in patients with high-grade gliomas, early physical training improves functional outcome and massage therapy reduces stress. Patients and caregivers found that telephone follow-up and a specialist nurse function was an effective and useful way to achieve information and support. Finally, psycho-education increased feelings of mastery among caregivers. CONCLUSIONS: As evidence is beginning to emerge, there is a need for well-designed longitudinal and randomised controlled trials of non-pharmacological interventions in high-grade glioma patients and their caregivers in order to develop clinical guidelines for supportive and rehabilitative approaches in this unique population.

Sexual function 1-year after allogeneic hematopoietic stem cell transplantation.

Treatment with allogeneic hematopoietic stem cell transplantation (HSCT) is associated with short and long-term toxicities that can result in alterations in sexual functioning. The aims of this prospective evaluation were to determine: (1) associations between HSCT and increased sexual dysfunction 1 year after treatment; and (2) associations between sexual dysfunction, body image, anxiety and depression. This controlled prospective cohort study was conducted from October 2010 to November 2013. Patients completed assessments 2-3 weeks before HSCT (N=124) and 1 year after treatment (N=63). Assessment included descriptive data, Sexual Functioning Questionnaire, Body Image Scale and Hospital Anxiety and Depression Scale. The results showed a significant decline in overall sexual function in both men and women (P=<0.001, P=0.010, respectively), although men generally scored higher than women. Forty-seven percent of men and 60% of women reported at least one physical sexual problem 1 year after HSCT. Patients with chronic GVHD trended toward reporting lower levels of sexual function. Finally, women with chronic GVHD scored lower than those without chronic GVHD on the sexual function problem subscale (P=0.008). Sexual dysfunction remains a major problem for men and women 1 year after HSCT and requires routine evaluation and treatment after HSCT.

Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.

BACKGROUND: Cystic fibrosis (CF) is a life shortening disease, however prognosis has improved and the adult population is growing. Most adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden. The aim of this study was to examine the relationships among treatment adherence, symptoms of depression and health-related quality of life (HRQoL) in a population of young adults with CF. METHODS: We administered three standardized questionnaires to 67 patients with CF aged 18-30 years; Morisky Medication Adherence Scale, Major Depression Inventory, and Cystic Fibrosis Questionnaire-Revised. RESULTS: There was a response rate of 77 % and a majority of the young adults (84 %) were employed or in an education program. Most participants (74 %) reported low adherence to medications. One third (32.8 %) of the participants reported symptoms of depression. HRQoL scores were especially low on Vitality and Treatment Burden, and symptoms of depression were associated with low HRQoL scores (p < 0.01) with medium to large deficits across on all HRQoL domains (Cohen's d 0.60-1.72) except for the domain treatment burden. High depression symptom scores were associated with low adherence (r = -0.412, p < 0.001). CONCLUSIONS: Despite improved physical health, many patients with CF report poor adherence, as well as impaired mental wellbeing and HRQoL. Thus, more attention to mental health issues is needed.

Erratum to: Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.

[This corrects the article DOI: 10.1186/s40064-016-2862-5.].

The feasibility of a brain tumour website.

PURPOSE: Patients with a high-grade glioma (HGG) and their caregivers have imminent and changing informational and supportive care needs. The purpose of this study was to investigate the feasibility and safety of a Danish brain tumour website (BTW) in patients with HGG and their caregivers. We hypothesized that the BTW would be feasible, safe, helpful and convenient for individuals to obtain support and information. METHODS: This is an exploratory, prospective six-month feasibility study. Two separate samples were collected: 1) a nationwide sample consisting of BTW visitors over a six-month period and 2) a sample of patients with HGG (n = 9) and their caregivers (n = 8) interviewed three months after being introduced to the BTW. RESULTS: The BTW was accessed from 131 different Danish towns and cities, and from ten different countries. The website had 637 unique users. The interviews identified one overarching theme 'challenges and barriers'. Being newly diagnosed, patients described a chaotic and overwhelming life situation and had difficulties in identifying with their new and changed role. When using the BTW, some patients and caregivers experienced technological challenges, while the former also experienced cognitive difficulties. Caregivers greatly appreciated that the BTW was available and that easily accessible specialists could answer their questions. CONCLUSION: The BTW attracted nationwide interest and activity, but the burden of being newly diagnosed with HGG combined with a low level of internet skills and cognitive deficits were barriers to participation. TRIAL REGISTRATION NUMBER: ISRCTN22038059.

The impact of gender and puberty on reference values for urinary growth hormone excretion: a study of 3 morning urine samples in 517 healthy children and adults.

Some recent studies have indicated that measurement of urinary GH (U-GH) excretion may be a useful tool for the evaluation of GH insufficiency in children with growth disorders, although some investigators are skeptical about the diagnostic value of U-GH. Most current assays are only available for specific laboratories or require time-intensive pretreatments of the specimens. This limits the possibility for many centers to compare their patients' data with others or to establish their own reference ranges for U-GH excretion. Therefore, we investigated the performance of a commercially available kit, which allows direct measurement of U-GH in untreated urine specimens. We established a reference range for the geometric mean of 3 morning urine samples in 446 healthy children and 71 adults. U-GH could be determined in all but 9 of 1526 samples (99.4%). U-GH excretion was significantly dependent on pubertal maturation (P < 0.001) and sex (P < 0.001), whereas age had no significant influence in the prepubertal group (P > 0.3). Peak values occurred in Tanner stages 3 and 4 (369 and 391 pg/h in females; 503 and 882 pg/h in males), corresponding to an age interval of 11-18 yr in boys and 9-15 yr in girls. Short collection periods (< 6 h) were related to low values for U-GH excretion (nanograms per night; P < 0.02). This time effect disappeared if U-GH excretion was expressed as picograms per h. If U-GH was related to creatinine output, there was a decrease in U-GH excretion during prepuberty, a blunting of the pubertal peak, and lower values in adults than in prepubertal children (P < 0.0002). The intraindividual variation in U-GH excretion (picograms per h) ranged from 40-61%, constituting approximately two thirds of the interindividual variation. This variation was not lowered by relating U-GH to creatinine. We conclude that the assay was suitable for measurement of U-GH excretion in virtually all healthy volunteers. Sex and pubertal stage as well as urinary volume and clock times for collection periods should be registered when establishing a reference range for U-GH excretion and applying it for clinical purposes. Our reference values may be useful for further studies of patients with GH disorders.

A longitudinal, qualitative and quantitative exploration of daily life and need for rehabilitation among patients with high-grade gliomas and their caregivers.

INTRODUCTION: High-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10% and a significant part of the ongoing research aims to increase survival through surgical and oncological treatments. Accordingly, there is an increasing need for investigating the HGG trajectory in order to recommend specific guidelines for rehabilitative and supportive interventions. METHOD AND ANALYSIS: This study protocol (phase I) describes a longitudinal, qualitative, explorative and descriptive interview study of the life situation and need for rehabilitation among patients and their caregivers and a quantitative evaluation of health-related quality of life. Qualitative and quantitative data are collected in parallel, analysed separately and then merged. The finding of this study will, together with the existing literature, form the background for phase II, which is a feasibility study with a pre-experimental one-group design testing a rehabilitative and supportive intervention programme. The aim of this paper was to describe the design of an upcoming study. Interviews with 30 patients and 30 caregivers will provide information about how the life situation is experienced during the first year after being diagnosed with HGG. Quantitative measurements of quality of life, well-being and physical activity will provide additional information. More precisely, both qualitative and quantitative data will support the planning of the programme regarding the type of intervention(s), with or without supervision, the appropriate time along the trajectory, frequency, localisation, endpoint measurements and eligible patients and/or caregivers. ETHICS AND DISSEMINATION: According to the Research Ethics Committee, approval is not needed for phase I as it is a non-intervention part of the study. Ethical approval of phase II will be sought at the time where the content of the intervention programme has been developed. Dissemination will occur through presentation and findings will be published in peer-reviewed journals.

The impact of hematopoietic stem cell transplantation on sexuality: a systematic review of the literature.

In this paper we review evidence concerning the impact of hematopoietic SCT (HSCT) on sexuality. The aims are to determine: (1) the sexual changes experienced by patients following allogeneic or autologous HSCT, and its consequences; (2) changes in the sexual function over time and (3) the impact of physiological changes induced by intensive treatment with radiation and chemotherapy on sexual functioning. Four databases were searched for articles published between January 1995 and May 2011. A total of 14 studies were identified and analyzed. We found that (1) multiple aspects of sexuality were affected, and the impact and etiology of these sexual alterations were different between genders, and (2) recovery of sexual activity and pleasure occurred in the first 2 years after HSCT, although it appears that some survivors are more likely to experience sexual dysfunction even 5-10 years after HSCT as compared with controls; and (3) there was contradictory evidence concerning possible differences between allogeneic and autologous HSCT, although there was a significant relation between the sexual dysfunctions and the type of chemotherapy administrated as conditioning and chronic GVHD. Future prospective research in sexual dysfunction with specific reliable validated instruments and more adequate sample sizes will be required to definitively evaluate the impact of HSCT on sexuality.

A randomized trial on the effect of a multimodal intervention on physical capacity, functional performance and quality of life in adult patients undergoing allogeneic SCT.

The aim of this randomized controlled trial was to investigate the effect of a 4- to 6-week multimodal program of exercise, relaxation and psychoeducation on physical capacity, functional performance and quality of life (QOL) in allogeneic hematopoietic cell transplantation (allo-HSCT) adult recipients. In all, 42 patients were randomized to a supervised multimodal intervention or to a control group receiving usual care. The primary end point was on aerobic capacity measured in VO(2) max. Secondary end points were muscle strength, functional performance, physical activity level, QOL, fatigue, psychological well-being and clinical outcomes. The multimodal intervention had a significant effect on physical capacity: VO(2) max (P<0.0001) and muscle strength: chest press (P<0.0001), leg extension (P=0.0003), right elbow flexor (P=0.0009), right knee extensor (P<0.0001) and functional performance (stair test) (0.0008). Moreover, the intervention group showed significantly better results for the severity of diarrhea (P=0.014) and fewer days of total parenteral nutrition (P=0.019). Longitudinal changes in QOL, fatigue and psychological well-being favored the intervention group, but did not reach statistical significance. Assignment of a multimodal intervention during allo-HSCT did not cause untoward events, sustained aerobic capacity and muscle strength and reduced loss of functional performance during hospitalization.

Doppler assessment of flow velocity in the uterine artery during pubertal maturation.

The aim of this study was to investigate the possible changes in uterine artery flow velocity during puberty and young adulthood. In a cross-sectional study, 133 healthy volunteers aged 6.7 to 25.4 years were investigated. Pubertal development according to the Tanner classification was recorded in each subject. Uterine arteries were visualized by transabdominal color-coded ultrasound. Maximum, minimum and time averaged maximum flow velocities were measured and the pulsatility index (PI) was calculated electronically. When flow velocity was compared between patients at different rates of pubertal development, we found that the average velocity increased from Tanner breast stages I and II to V, followed by a slight decrease in adults (p < 0.0001). The PI varied significantly from stage I to adult (p < 0.0001). The PI was similar in breast stage I, stage II and in adults, with median 4.7 (range 2.7-8.5), 6.1 (range 3.0-7.8) and 4.3 (range 1.9-8.1), respectively. The PI decreased in stages III and IV to 2.6 (1.8-8.4) and 2.8 (1.2-7.9), respectively, whereas stage V was intermediate, at 3.7 (1.1-6.3). The variance of PI was independent of age. In summary, we demonstrated a significant increase in the uterine artery flow velocity during puberty. Furthermore, a significant decline in vascular resistance expressed by the PI was observed in the mid-pubertal period, reflecting increasing blood flow to the rapidly growing uterus.

Effectiveness of a dietary intervention strategy in general practice: effects on blood lipids, health and well-being.

OBJECTIVES: To evaluate the effect of a dietary treatment programme on blood cholesterol concentration in hypercholesterolaemic patients in general practice and to analyse subjectively experienced side-effects. DESIGN: A 1-year parallel trial comparing a new treatment programme with conventional treatment. SETTING: General practitioners in Roskilde county, Denmark. SUBJECTS: 355 men and women, aged 20-60 years, with a persistent blood cholesterol concentration above age- and gender-specific cut-off points (265 in an intervention group and 90 in a control group). INTERVENTION: A treatment strategy based on collaboration between doctor and dietitian using individual dietary advice and feedback from measured biological parameters. MAIN OUTCOME MEASURES: Serum lipids, body weight, blood pressure, dietary behaviour, health parameters, quality of life parameters and acceptance by patients and general practitioners. RESULTS: Total blood cholesterol concentration decreased by 14% (1.07 mmol l(-1), P < 0.0001) in 159 patients in the intervention group, not having any lipid altering drug during treatment, in addition to 3% from screening to start of treatment. In 65 patients in the control group, without any lipid altering drug, the reduction of cholesterol concentration was 4% (0.27 mmol l(-1), P < 0.01; intervention vs. control P < 0.001). In the intervention group overweight subjects (body mass index > 30) reduced body weight by 6% (P < 0.0001). Systolic blood pressure was reduced by 11% (P < 0.0001) and diastolic blood pressure by 10% (P < 0.0001) and 19% (P < 0.003) for intervals 90-110 mmHg and > 110 mmHg, respectively. Risk score decreased and self-assessed health, physical and psychological well-being improved. CONCLUSIONS: The treatment strategy tested proved to be efficient, without side-effects and well accepted by patients and general practitioners. The results strongly suggest that hypercholesterolaemia can efficiently be treated non-pharmacologically in general practice.