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Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads.

ABSTRACT: Background: A reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility.

Objective: As patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers.

Methods: We searched threads (original posts and responses) on four subreddit sites of Reddit ("r/Cancer," "r/TryingForABaby," "r/BabyBumps," and "r/Infertility") over a 5-year period between February 4th, 2014 and February 4th, 2019. Threads with original posts involving a lived experience or question regarding cancer treatment and female fertility and/or pregnancy or parenting/having children from the perspective of either patient or caregiver were included in our analysis. We analyzed threads using thematic analysis.

Results: From 963 Reddit threads identified, 69 were analyzed, including 56 with original posts by women with cancer and 13 with original posts by caregivers. From threads made by patients, we identified themes on becoming a part of an online community, impacts of cancer treatment and fertility concerns on self and social relationships, making family planning decisions, and experiences with medical team. We also identified a theme on the impact of cancer treatment and fertility concerns on caregivers.

Conclusions: Reddit provided a rich pool of data for analyzing the information needs of women facing cancer. Our findings demonstrate the far-reaching impacts of cancer treatment and fertility on physical, mental, and psychosocial health for both patients and their caregivers.

SUBMITTER: Garg R

PROVIDER: S-EPMC7744261 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads.

Garg Ria R Rebić Nevena N De Vera Mary A MA

JMIR cancer 20201202 2

<h4>Background</h4>A reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility.<h4>Objective</h4>As patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers.<h4>Methods</h4>We searched threads (original posts and responses) on four s ...[more]

PMID: 33263547

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Project description:BackgroundAs cancer treatments continue to improve, it is increasingly important that women of reproductive age have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program is to develop an interactive web-based patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions.ObjectiveThis study aims to assess providers' and survivors' fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid.MethodsSemistructured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results.ResultsA total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation.ConclusionsDecision making about fertility preservation is an important step in providing high-quality comprehensive cancer care and a priority for many survivors' optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate toward an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women's clinical characteristics and their information-seeking and deliberative styles.

Project description:ObjectivesLittle is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.DesignCross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.SettingPatients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.ParticipantsPurposeful sample of 10 patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).ResultsFour themes were identified: (1) leading to the initial consultation-HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information-informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care-patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment-there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.ConclusionsAlthough patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.

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Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads.

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Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads.

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