Birgitta Johansson's projects in caring sciences in oncology

Internet based support (Carer eSupport) for informal caregivers of patients with head and neck cancer – a multicentre randomized controlled trial

Birgitta Johansson

Informal care is unpaid and provided by a dependent person’s partner, another family member or a friend, i.e. informal caregivers. Informal caregivers to people who undergoes treatment for head- and neck cancer commonly have to take a on a great responsibility for the homebased care, which they may not be prepared for. Informal caregivers have great unmet needs for support from healthcare professionals and are at risk for a decreasing health which may persist for several years.

The overall aim the project is to develop, test and evaluate the effect of internet-based support (Carer eSupport) for informal caregivers (IC s) to patients head and neck cancer (HNC ) on preparedness for caregiving, caregiver burden and self-perceived health, compared to standard care, within a randomized controlled trial.

The project is supported by a grant from the Swedish Research Council 2020-2022 and is a multidisciplinary collaboration with Maria Carlsson, Dept. of Public Health and Caring Sciences, Ylva Tiblom Ehrsson and Göran Laurell, Dept. of Surgical Sciences, Åsa Cajander, Dept of Information Technology, and Sven Alfonsson and Louise von Essen, Dept. of Women's and Children's Health.

Evidence-based nursing regarding support for physical activity and nutritional care for patients undergoing stem cell transplantation

Sölvi Vejby (Public Health and Caring Sciences, UU), Birgitta Johansson

Patients undergoing hematopoietic stem cell transplantations (HSCT) are kept in isolation approximately 2–4 weeks after the HSCT because of severe susceptibility to infections. During the isolation, patients are prone to suffer from nausea, mucositis, pain, fever, fatigue, and psychological distress related to the treatment and the isolation. The risk of malnutrition and physical inactivity is substantial.

The overall aim of this project is to develop and evaluate evidence-based support strategies to increase physical activity and improve nutritional care, and to implement these strategies into clinical practice. The goal is to decrease side-effects, the need for hospitalization, antibiotics and parenteral nutrition, and to improve health-related quality of life.

Internet based screening and stepped care for adult cancer patients with anxiety or depression symptoms

Anna Hauffman, Marina Forslund, Birgitta Johansson, Peter Nygren

The research programme U-CARE is an interdisciplinary project in the field of psychosocial care in connection with somatic disease.

We are heading the subproject within adult oncology care, which aims to evaluate the effects of internet based stepped care (iCAN-DO) on anxiety, depression and health related quality of life in cancer patients compared to standard care.

The recruitment and data collection have been completed and we are currently evaluating the effects of iCAN-DO. Results recently presented on an awarded poster at the ESMO conference in Barcelona 2019 suggest that iCAN-DO may decrease depression symptoms compared to standard care. Participants who have had access to iCAN-DO experience iCAN-DO as a useful and reliable source of information and support, constituting a complement to standard care, according to results from an interview study. Results from the interviews also suggest that iCAN-DO may be improved by providing more individualized information and support.

Bowel symptoms after radiotherapy of prostate cancer

Marina Forslund, Birgitta Johansson, Peter Nygren, Anna Ottenblad

This project aims to determine the long-term effects of a dietary intervention on bowel symptoms after radiotherapy for prostate cancer. Patients were randomized to an intervention group (IG) that were advised to replace insoluble with soluble dietary fibre and reduce lactose intake, or to a standard care group (SCG) advised to continue their usual diet.

The main paper from the project was published in November 2019. There were only small and inconclusive differences between the IG and the SCG with regard to bowel symptom and health related quality of life during the 26-months follow-up period. The conclusion is that the evaluated nutrition intervention cannot be recommended for implementation in routine cancer care to reduce adverse effects from pelvic radiotherapy.

Interviews with men who received dietary advices show that they were motivated to make changes in their diet to avoid bowel symptoms and that diet knowledge and social support was important to facilitate adherence to the advices. Example of barriers to adherence to dietary advice a feeling of being limited and a loss of motivation over time.

Evaluation of toxicity and care during proton beam therapy

Birgitta Johansson

The Skandion Clinic in Uppsala is the first clinic for advanced radiation therapy with scanned proton beam therapy (PBT) in the Nordic countries. Conventional radiotherapy has several known toxicities but for proton therapy the scientific knowledge regarding patient reported toxicity in short and long-term perspectives is scarce. In addition, the patients’ experiences of the care during proton therapy have not been investigated.

The recruitment of patients is ongoing but some initial studies have been reported. Patients undergoing PBT due to a brain tumour reported a generally low symptom intensity during the PBT-period. The highest symptom intensity level were found for fatigue, and increasing symptom intensities during PBT was reported for fatigue, pain, loss of appetite, cognitive impairment, and nausea. A need for quality improvement of patient care has also been reported, for example with regard to information about side effects of treatment and support to manage symptoms.

The effects of physical exercise during cancer therapy

Birgitta Johansson, Peter Nygren

In the project Phys-Can, headed by Karin Nordin at the Department of Public Health and Caring Sciences, we are evaluating the efficacy and cost-effectiveness of individually tailored high and low-moderate intensity physical exercise. It is a multi-centre randomized controlled trial (RCT) including newly diagnosed breast, colorectal and prostate cancer patients during adjuvant therapy in the university hospitals in Uppsala, Lund and Linköping.

The main aim is to evaluate the effects of high or low-moderate intensity exercise in combination with behavioural medicine strategies (BM) or without BM on cancer related fatigue. In a sub-study we also study the effects of physical exercise on skeletal muscles during chemotherapy for breast cancer. A hypothesis is that exercise may prevent the negative effects of chemotherapy on skeletal muscles. Women undergoing chemotherapy for breast cancer are randomised to a physical exercise intervention or a control group. All participants undergoes muscle biopsies before and after treatment.

The recruitment of 600 patients to the RCT is completed and we are currently analysing the short time effects of the exercise programs. The recruitment to the muscle biopsy study is ongoing and expected to be completed at the end of 2020.

Effects of an Internet based patient education on patient satisfaction and image quality in 18F-FDG-PET/CT examinations

Camilla Andersson (Surgical Sciences, UU), Birgitta Johansson

18F-FDG-PET/CT is a standard examination used for diagnostics and therapy control in cancer diseases. High image quality from an 18F-FDG-PET/CT examination requires that the patient is well prepared before coming to the examination and that the patient stay still during the examination. Poorly prepared patient can result in that the examination has to be redone. 

The project was finalised during 2018. The main conclusions are that web-based information may help people to prepare before and to undergo an 18F-FDG-PET/CT , that the image quality is high and that patients are generally satisfied with the care before and during the examination. However, there are room for improvements especially regarding the information about the examination and its results, and the communication with the nursing staff during the PET/CT scan.