Content Analysis of Online Focus Group Discussions are a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience

BACKGROUND: Clinical research often lacks participants of young age. Adding to the small amount of scientific studies that focus on the population entering adulthood, there are also difficulties to recruit them. To overcome this, there is a need to develop and scientifically evaluate modes for data collection that are suitable for adolescents and young adults. With this in mind we performed 39 online focus group discussions among young survivors of childhood cancer to explore thoughts and experiences around dating, being intimate with someone, and having children. OBJECTIVE: The aim of the study was to evaluate online focus group discussions as a mode for data collection on sensitive issues among young persons with a cancer experience. METHODS: One hundred thirty-three young persons (16-25 years) previously diagnosed with cancer, participated in 39 synchronous online focus group discussions (response rate 134/369, 36%). The mode of administration was evaluated by analyzing participant characteristics and interactions during discussions, as well as group members' evaluations of the discussions. RESULTS: Persons diagnosed with central nervous tumors (n=30, 27%) participated to a lower extent than those with other cancer types (n=103, 39%; χ 2= 4.89, P=.03). The participants described various health impairments that correspond to what would be expected among cancer survivors including neuropsychiatric conditions and writing disabilities. Even though participants were interested in others' experiences, sexual issues needed more probing by the moderators than did fertility-related issues. Group evaluations revealed that participants appreciated communicating on the suggested topics and thought that it was easier to discuss sex when it was possible to be anonymous toward other group members. CONCLUSIONS: Online focus group discussions, with anonymous participation, are suggested to be a feasible and valid mode for collecting sensitive data among young persons with a cancer experience

Editorial introduction: decision making, reasoning, context and perspective

This edition includes articles based on presentations to an international conference in March 2019 at the University of West London (UWL) in the United Kingdom, on the subject of “Shared Decision-Making, Person-Centred Care & The Values Agenda”—a conference organized by UWL's European Institute for Person Centred Health and Social Care, in collaboration with the European Society for Person Centred Healthcare and the Collaborating Centre for Valuesbased Practice at St. Catherine's College, Oxford, U

Women's perceptions of personalized risk-based breast cancer screening and prevention: An international focus group study

Contains fulltext : 204264.pdf (publisher's version ) (Open Access

Women's perceptions of the adoption of personalised risk-based breast cancer screening and primary prevention: a systematic review

Contains fulltext : 200521.pdf (publisher's version ) (Open Access)INTRODUCTION: Increased knowledge of breast cancer risk factors may enable a paradigm shift from the current age-based mammographic screening programmes to a personalised risk-based approach. This would warrant a significant change in practice, yet the acceptability from a woman's perspective has never been systematically explored. In this systematic review, we inventoried and appraised studies of women's perceptions of risk-based breast cancer screening and prevention to identify factors associated with adopting this new paradigm. METHODS: We searched Medline, Embase and PsycInfo to identify original articles in English containing perceptions of risk-based breast cancer screening and/or primary prevention of women with an average to above average risk of developing breast cancer. Qualitative data were systematically extracted and referenced against four theoretical models of preventative health behaviour adoption. RESULTS: When considering the adoption of this novel screening and prevention programme, women carefully review their perceived susceptibility to breast cancer. Their decisions are based on a cost-benefit analysis of adopting lifestyle changes, chemoprevention, or prophylactic surgery, taking into account their perceived competence, individual autonomy, relatedness to others, and personal preference. The role of intent is limited when considering behavioural change. CONCLUSIONS: Implementing risk-based breast cancer screening and prevention will require a multifactorial approach. The transition from theory to practice can be supported by developing evidence-based shared decision aids and family-oriented (genetic) counselling programmes

Are we ready for the challenge of implementing risk-based breast cancer screening and primary prevention?

BACKGROUND: Increased knowledge of breast cancer risk factors provides opportunities to shift from a one-size-fits-all screening programme to a personalised approach, where screening and prevention is based on a woman's risk of developing breast cancer. However, potential implementation of this new paradigm could present considerable challenges which the present review aims to explore. METHODS: Bibliographic databases were searched to identify studies evaluating potential implications of the implementation of personalised risk-based screening and primary prevention for breast cancer. Identified themes were evaluated using thematic analysis. RESULTS: The search strategy identified 5699 unique publications, of which 59 were selected for inclusion. Significant changes in policy and practice are warranted. The organisation of breast cancer screening spans several healthcare delivery systems and clinical settings. Feasibility of implementation depends on how healthcare is funded and arranged, and potentially varies between countries. Piloting risk assessment and prevention counselling in primary care settings has highlighted implications relating to the need for extensive additional training on risk (communication) and prevention, impact on workflow, and professionals' personal discomfort breaching the topic with women. Additionally, gaps in risk estimation, psychological, ethical and legal consequences will need to be addressed. CONCLUSION: The present review identified considerable unresolved issues and challenges. Potential implementation will require a more complex framework, in which a country's healthcare regulations, resources, and preferences related to screening and prevention services are taken into account. However, with the insights gained from the present overview, countries expecting to implement risk-based screening and prevention can start to inventory and address the issues that were identified

Psychological factors addressed in cognitive behaviour therapy for paediatric functional abdominal pain: Which are most important to target?

The effectiveness of cognitive behaviour therapy for paediatric functional abdominal pain leaves room for improvement. We studied which factors addressed in cognitive behaviour therapy relate most strongly to the physical and psychological functioning of children with functional abdominal pain and are thus most important to target. Questionnaires were filled out by 117 children with functional abdominal pain and their parents. Multiple regression analyses showed that children's passive coping and parental and children's positive cognitions relate to child functioning. Negative cognitions and parental solicitous behaviour were unrelated to child functioning. Cognitive behaviour therapy for functional abdominal pain may benefit most from changing children's passive coping and promoting positive cognitions.Development Psychopathology in context: famil

Adding high-intensity interval training to conventional training modalities : optimizing health-related outcomes during chemotherapy for breast cancer: the OptiTrain randomized controlled trial

PURPOSE: Exercise training is an effective and safe way to counteract cancer-related fatigue (CRF) and to improve health-related quality of life (HRQoL). High-intensity interval training has proven beneficial for the health of clinical populations. The aim of this randomized controlled trial was to compare the effects of resistance and high-intensity interval training (RT-HIIT), and moderate-intensity aerobic and high-intensity interval training (AT-HIIT) to usual care (UC) in women with breast cancer undergoing chemotherapy. The primary endpoint was CRF and the secondary endpoints were HRQoL and cancer treatment-related symptoms. METHODS: Two hundred and forty women planned to undergo chemotherapy were randomized to supervised RT-HIIT, AT-HIIT, or UC. Measurements were performed at baseline and at 16 weeks. Questionnaires included Piper Fatigue Scale, EORTC-QLQ-C30, and Memorial Symptom Assessment Scale. RESULTS: The RT-HIIT group was superior to UC for CRF: total CRF (p = 0.02), behavior/daily life (p = 0.01), and sensory/physical (p = 0.03) CRF. Role functioning significantly improved while cognitive functioning was unchanged for RT-HIIT compared to declines shown in the UC group (p = 0.04). AT-HIIT significantly improved emotional functioning versus UC (p = 0.01) and was superior to UC for pain symptoms (p = 0.03). RT-HIIT reported a reduced symptom burden, while AT-HIIT remained stable compared to deteriorations shown by UC (p &lt; 0.01). Only RT-HIIT was superior to UC for total symptoms (p &lt; 0.01). CONCLUSIONS: 16 weeks of resistance and HIIT was effective in preventing increases in CRF and in reducing symptom burden for patients during chemotherapy for breast cancer. These findings add to a growing body of evidence supporting the inclusion of structured exercise prescriptions, including HIIT, as a vital component of cancer rehabilitation. TRIAL REGISTRATION: Clinicaltrials.gov Registration Number: NCT02522260.CC BY 4.0</p

'Will I be able to have a baby?' Results from online focus group discussions with childhood cancer survivors in Sweden

STUDY QUESTION: What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile? SUMMARY ANSWER: The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future. WHAT IS KNOWN ALREADY: Many childhood cancer survivors want to have children and worry about possible infertility. STUDY DESIGN, SIZE, DURATION: For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013. PARTICIPANTS/MATERIALS, SETTING, METHODS: Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16-24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis. MAIN RESULTS AND THE ROLE OF CHANCE: The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer. LIMITATIONS, REASONS FOR CAUTION: Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile. WIDER IMPLICATIONS OF THE FINDINGS: The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services. STUDY FUNDING/COMPETING INTERESTS: The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest