Nurse-led consultations reinforced with eHealth technology: a qualitative study of the experiences of patients with gynecological cancer.

BACKGROUND: During the last decade, the health care profession has moved toward personalized care and has focused on the diversity of survivorship needs after initial cancer treatment. Health care providers encourage empowering patients to participate actively in their own health management and survivorship. Consequently, we developed and piloted a new follow-up model for patients at a Norwegian hospital, referred to as the Lifestyle and Empowerment Techniques in Survivorship of Gynecologic Oncology (LETSGO) model. Using LETSGO, a dedicated nurse replaces the physician in every second follow-up consultation, providing patients who have undergone cancer treatment with self-management techniques that are reinforced with eHealth technology via a specially designed app. Encouraging behavioral change and evaluating the late effects of treatment and recurrence symptoms are central components of self-management techniques. In addition, the app encourages physical activity and positive lifestyle changes, helps identify recurrence-related symptoms, and provides reminders of activity goals. This study aims to investigate experiences with nurse-led consultations supported by eHealth technology among the patients who piloted the LETSGO intervention. METHODS: Semi-structured qualitative interviews were conducted to analyze the participants' experiences with the LETSGO intervention after six to seven months. RESULTS: The participants in the LETSGO pilot felt safe and well cared for. They thought the nurse was less busy than the doctors appear to be, which made it easy for them to share any cancer-related challenges. Many participants reported increased empowerment and confidence in recognizing symptoms of cancer recurrence, and participants who used the app regularly were motivated to increase their physical activity levels. However, the participants also experienced some limitations and technical errors with the app. CONCLUSIONS: Generally, the participants positively received the nurse-led consultations and eHealth technology, but an intervention study is required for further evaluation. In addition, the reported technical app errors should be resolved and tested prior to eHealth application implementation. Regardless, this study may be useful in planning personalized survivorship care studies. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03453788 . Registration March 5, 2018.

Self-management and adherence to recommended follow-up after gynaecological cancer: results from the international InCHARGE study.

OBJECTIVE: To assess the relationship between self-management skills and adherence to follow-up guidelines among gynecological cancer survivors in the Netherlands, Norway, and Denmark, and to assess the relationship between adherence to follow-up programs and use of additional healthcare services. METHODS: For this international, multicenter, cross-sectional study, we recruited gynecological cancer survivors 1-5 years after completion of treatment. Information on follow-up visits, use of healthcare resources, self-management (measured by the Health Education Impact Questionnaire), clinical characteristics, and demographics were obtained by validated questionnaires. Participants were categorized as adherent if they attended the number of follow-up visits recommended by national guidelines, non-adherent if they had fewer visits than recommended, or over-users if they had more visits than recommended. RESULTS: Of 4455 invited survivors, 2428 (55%) returned the questionnaires, and 911 survivors were included in the analyses. Survivors with high self-management most frequently adhered to recommended follow-up. Non-adherent survivors showed lower self-management in the health-directed activity domain (OR 1.54, 95% CI 1.03 to 2.32) than adherent survivors. No other associations between self-management and follow-up adherence were revealed. Non-adherent survivors tended to have endometrial cancer, surgical treatment only, be older, and be Danish residents. Over-users reported more follow-up visits and also used additional healthcare services more frequently than adherent survivors. CONCLUSION: Low self-management appears to reduce the likelihood of adherence to national guidelines for gynecological cancer follow-up. Focusing on patient education for survivors at risk of low self-management to ensure adherence to recommended follow-up may improve personalization of follow-up.

Uterine leiomyosarcoma - incidence, treatment, and the impact of morcellation. A nationwide cohort study.

INTRODUCTION: The risk of morcellation of occult uterine leiomyosarcomas (LMS) during laparoscopic procedures has been under scrutiny over recent years. The objective of this study was to assess the operative treatment performed in women with uterine LMS in Norway in 2000-2012, including the number of morcellated LMS. MATERIAL AND METHODS: Retrospective nationwide cohort study. The study participants were all women with histopathologically verified uterine LMS in Norway during 2000-2012. The data were collected from the Cancer Registry of Norway, National Patient Registry and medical records. RESULTS: There were 212 women diagnosed with uterine LMS in Norway in 2000-2012. Mean age at time of diagnosis was 58.1 years (SD ± 12.5). The most frequent symptom in women suffering from LMS was abnormal uterine bleeding [110/212 (51.9%)]. LMS was histopathologically verified in 49/212 (23.1%) preoperatively. In 48/212 (22.6%), a malignant condition was suspected and they were treated accordingly. In 115/212 (54.2%), malignancy was not suspected at time of surgery and the women were treated according to the treatment protocol for fibroids. In only four patients was tissue retrieval by power morcellation conducted, accounting for 1.9% of all LMS cases. CONCLUSIONS: In more than 50% of women suffering from LMS, a malignant diagnosis was not confirmed or suspected prior to surgery. In our material, power morcellation of LMS has not lead to reduced survival. We suggest that power morcellators may be used in surgical treatment of selected cases of premenopausal women with symptomatic, presumed benign uterine leiomyomas.

Preoperative evaluation in women with uterine leiomyosarcoma. A nationwide cohort study.

INTRODUCTION: The goal of this study was to assess the sensitivity of different preoperative diagnostic tools used in women with uterine leiomyosarcomas. MATERIAL AND METHODS: Retrospective cohort study of all women with verified uterine leiomyosarcoma in Norway in the period 2000 to 2012. Data were collected from the Cancer Registry of Norway and medical records. RESULTS: There were 212 women diagnosed with uterine leiomyosarcoma in the 13-year period. Histopathological examinations by fractional curettage or endometrial biopsies verified malignancy in 55/142 (38.7%). MRI suggested malignancy in 45/55 (81%) of the examinations. CT evaluations indicated suspected malignancy in 64/107 women (59.8%). Biomarkers had low sensitivity for leiomyosarcoma, but suggested more advanced stage disease when high values were detected. Stage IV disease was present in 53.1% versus 25.5% (p = 0.01) of women with CA 125 values above 35 kU/L, compared with women with normal CA 125 values. In 115/212 (54.2%), leiomyosarcoma was only diagnosed postoperatively by histopathological examination of the removed specimen. CONCLUSIONS: Preoperative diagnostic modalities appear to have low sensitivity for differentiating leiomyosarcoma from fibroids. In Norway, approximately 54% of uterine leiomyosarcoma are unidentified before surgery. MRI evaluation was the imaging modality with the greatest sensitivity in identifying leiomyosarcoma preoperatively.

Motor regulation problems and pain in adults diagnosed with ADHD.

BACKGROUND: Most children who are diagnosed with attention deficit-hyperactivity disorder (ADHD) have moderate-to-severe motor problems using the Motor Function Neurological Assessment battery (MFNU). The MFNU focuses on specific muscle adjustment problems associated with ADHD, especially motor inhibition problems and high muscle tone. Here we investigated whether adults with ADHD/hyperkinetic disorder (HKD) have similar motor problems. In our clinical experience, adults with ADHD often complain about back, shoulder, hip, and leg pain. We also investigate reported pain in adults with ADHD. METHODS: Twenty-five adult outpatients diagnosed with ADHD/HKD who were responders to methylphenidate (MPH) were compared to 23 non-ADHD controls on 16 MFNU subtests and using a 'total score' ('TS') parameter. The MFNU test leader was blinded to group identity. The two groups were also compared using the Pain Drawing and Numerical Pain Rating Scale. RESULTS: The adult ADHD group had significantly (p < .001) more motor problems (higher TS) than controls. On the muscle regulation subtests, 36-96% of the ADHD group showed 'moderate' to 'severe' problems compared to 13-52% of the control group, and 80% of the ADHD group reported widespread pain. Highly significant differences were found between the ADHD and control groups for the variables 'pain level' (p < .001) and 'pain location' (p < .001). Significant correlations were found between TS and 'pain location' and between TS and 'pain level'. CONCLUSIONS: These findings suggest that similar to children with ADHD, adults diagnosed with ADHD also have motor inhibition problems and heightened muscle tone. The presence of significantly higher pain levels and more widespread pain in the ADHD group compared to non-ADHD controls might indicate that pain is a long-term secondary effect of heightened muscle tone and restricted movement that can be demonstrated in children and adults by the MFNU battery.

Lifestyle and Empowerment Techniques in Survivorship of Gynaecologic Oncology (LETSGO study): a study protocol for a multicentre longitudinal interventional study using mobile health technology and biobanking.

INTRODUCTION: The number of gynaecological cancer survivors is increasing and there is a need for a more sustainable model of follow-up care. Today's follow-up model is time-consuming and patients have reported unmet needs regarding information about their cancer and strategies for managing the consequences of treatment. The main aim of this study is to assess health-related empowerment-in terms of patient education, psychosocial support, and promotion of physical activity-in a new follow-up model by comparing it to standard follow-up in a quasi-randomised study involving intervention hospitals and control hospitals. METHODS AND ANALYSIS: At the intervention hospitals, patients will be stratified by risk of recurrence and late effects to either 1 or 3 years' follow-up. Nurses will replace doctors in half of the follow-up visits and focus in particular on patient education, self-management and physical activity. They will provide patients with information and guide them in goal setting and action planning. These measures will be reinforced by a smartphone application for monitoring symptoms and promoting physical activity. At the control hospitals, patients will be included in the standard follow-up programme. All patients will be asked to complete questionnaires at baseline and after 3, 6, 12, 24 and 36 months. Blood samples will be collected for biobanking at 3, 12 and 36 months. The primary outcome is health-related empowerment. Secondary outcomes include health-related quality of life, adherence to physical activity recommendations, time to recurrence, healthcare costs and changes in biomarkers. Changes in these outcomes will be analysed using generalised linear mixed models for repeated measures. Type of hospital (intervention or control), time (measurement point), and possible confounders will be included as fixed factors. ETHICS AND DISSEMINATION: The study is approved by the Regional Committee for Medical Research Ethics (2019/11093). Dissemination of findings will occur at the local, national and international levels. TRIAL REGISTRATION NUMBER: NCT04122235.