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"Will It Affect Our Chances of Having Children?" and Feeling "Like a Ticking Bomb" -The Fertility Concerns and Fears of Cancer Progression and Recurrence in Cancer Treatment Decision-Making Among Young Women Diagnosed With Gynaecological or Breast Cancer.

ABSTRACT: Objective: Cancer treatment decision making process is particularly fraught with challenges for young women because the treatment can affect their reproductive potential. Among many factors affecting the process, fears of cancer progression and recurrence can also be important psychological factors. Our aim is to apply Common-Sense Model and shared decision-making model to explore experiences of treatment decision-making women of reproductive age who were diagnosed with gynaecological or breast cancer and the influence of fertility issues and fears of cancer progression and recurrence. Method: We conducted telephone interviews with 24 women who were diagnosed with gynaecological or breast cancer aged 18-45, who finished active treatment within 5 years prior to study enrolment and had no known evidence of cancer recurrence at the time of participation. They were recruited from three NHS oncology clinics in Scotland and online outlets of cancer charities and support organisations. We analysed the data using Braun and Clarke's thematic analysis method as it allows for both inductive and deductive analyses. Results: We identified five main themes pertaining to treatment-related decision-making experiences and fertility issues and fear of progression and recurrence: Becoming aware of infertility as a potential consequence of cancer treatment; Balancing-prioritising cancer and fertility; Decisions about treatments; Evaluation of treatment decisions; and The consequences of treatments. Sub-themes have also been reported. Different factors such as whether the cancer is breast or gynaecological, physicians' willingness of discussing fertility, influence of others in decision-making, childbearing and relationship status as well as fear of cancer recurrence emerged as important. Conclusion: The importance of physicians directly addressing fertility preservation in the process of treatment decision-making and not treating it as an "add-on" was evident. Satisfaction with treatment decisions depended on both the quality of the process of decision making and its outcome. Fear of recurrence was present in different parts of the adaptation process from illness perceptions to post-treatment evaluation of decisions. Both Common-Sense Model and shared decision-making model were helpful in understanding and explaining young women's experience of treatment decision-making and fertility concerns.

SUBMITTER: Sobota A

PROVIDER: S-EPMC8206503 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThe impact of the COVID-19 pandemic on European gynaecological cancer patients under active treatment or follow-up has not been documented. We sought to capture the patient perceptions of the COVID-19 implications and the worldwide imposed treatment modifications.MethodsA patient survey was conducted in 16 European countries, using a new COVID-19-related questionnaire, developed by ENGAGe and the Hospital Anxiety & Depression Scale questionnaire (HADS). The survey was promoted by national patient advocacy groups and charitable organisations.FindingsWe collected 1388 forms; 592 online and 796 hard-copy (May, 2020). We excluded 137 due to missing data. Median patients' age was 55 years (range: 18-89), 54.7% had ovarian cancer and 15.5% were preoperative. Even though 73.2% of patients named cancer as a risk factor for COVID-19, only 17.5% were more afraid of COVID-19 than their cancer condition, with advanced age (>70 years) as the only significant risk factor for that. Overall, 71% were concerned about cancer progression if their treatment/follow-up was cancelled/postponed. Most patients (64%) had their care continued as planned, but 72.3% (n = 892) said that they received no information around overall COVID-19 infection rates of patients and staff, testing or measures taken in their treating hospital. Mean HADS Anxiety and Depression Scores were 8.8 (range: 5.3-12) and 8.1 (range: 3.8-13.4), respectively. Multivariate analysis identified high HADS-depression scores, having experienced modifications of care due to the pandemic and concern about not being able to visit their doctor as independent predictors of patients' anxiety.InterpretationGynaecological cancer patients expressed significant anxiety about progression of their disease due to modifications of care related to the COVID-19 pandemic and wished to pursue their treatment as planned despite the associated risks. Healthcare professionals should take this into consideration when making decisions that impact patients care in times of crisis and to develop initiatives to improve patients' communication and education.

Project description:BackgroundChildhood epilepsy is a serious and common neurological condition and can have life-long consequences and its impact can pervade all aspects of family life. Whilst the medical management of seizures is important, much of the day-to-day home management of epilepsy is invisible to people external to the family, including health care professionals, and parents'/caregivers' fears and concerns can go unacknowledged and unaddressed by health care professionals.ObjectiveThis objective of this review was to examine parents'/caregivers' fears and concerns regarding their child's epilepsy, the impact of these fears and concerns on family life, the social and emotional well-being of parents/caregivers and any factors which mitigate these fears and concerns.DesignScoping review using a modified version of Arksey and O'Malley's framework.Data sourcesRelevant studies were identified using key search terms in Scopus, Medline, CINAHL and PsychInfo databases in March 2021 with hand checking of reference lists. Search terms were developed using population (parents/caregivers of children aged ≤ 18 years with epilepsy, families); concept (parents'/caregivers' fears, concerns, anxiety about their child's epilepsy); and context (any setting). A further search was run in April 2022. Other inclusion criteria: English language empirical studies, 2010-2021.Study appraisal methodsA minimum of two reviewers independently screened articles and undertook data extraction and decisions were consensually made. Methodological quality appraisal was undertaken using the Mixed Methods Appraisal Tool v2018. A data extraction table was created to chart all studies. The conduct and reporting of this study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (S1 Table). There is no published copy of the review protocol.Main findingsThe search identified a total of 4077 papers (after duplicates were removed) of which 110 were assessed for eligibility. Twenty-four papers published between 2010-2021 were included in the review and each paper was treated as a separate study. The review findings indicate that parents'/caregivers' fears and concerns stem from more than their child's seizures and relate to many wider aspects of family life. These fears and concerns had far-reaching influences on their parenting/caregiving, and on the lifestyle and activities of their child and their family. What was less evident was what parents/caregivers wanted in terms of support or how they thought health professionals could acknowledge and/or allay their fears and concerns. The discussion is framed within the compassion-focused therapy model as a basis for generating new thinking about the impact of these fears and concerns and the need for a new agenda for clinical consultations in childhood epilepsy.ConclusionsThe review concludes with a proposal that a more compassionate agenda underpins the dialogue between parents/caregivers and clinicians to encompass and mitigate the wider emotional, psychosocial, and societal threats that impact on the parent/caregivers of children with epilepsy.

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"Will It Affect Our Chances of Having Children?" and Feeling "Like a Ticking Bomb" -The Fertility Concerns and Fears of Cancer Progression and Recurrence in Cancer Treatment Decision-Making Among Young Women Diagnosed With Gynaecological or Breast Cancer.

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