Complementary and Alternative Medicine in Patients With Breast Cancer: Exploratory Study of Social Network Forum Data

Lognos, Béatrice; Carbonnel, François; Launay, Isabelle Boulze; Bringay, Sandra; Guerdoux-Ninot, Estelle; Mollévi, Caroline; Sénesse, Pierre; Ninot, Grégory

doi:10.2196/12536

Cited by 19 publications

(35 citation statements)

References 39 publications

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“…The presented study shows that a significant number of patients using unconventional practices gave up on standard procedures of oncological treatment, while some patients were considering giving up this treatment in the future. It seems to be crucial to apply proper methods of communication with these patients, which should be based on EBM and effective communication skills [33,34]. The majority of the respondents confirmed improvement after administration of unconventional therapies, which is consistent with prior literature analysis [25].…”

Section: Discussionsupporting

confidence: 78%

The prevalence of complementary and alternative methods and their impact on conventional cancer treatment among oncological patients in Poland – an institutional study

Reszka¹,

Moskal²,

Remiorz³

et al. 2021

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Introduction: Nowadays, complementary and alternative medicine (CAM) is gaining more adherents in Poland. Awareness of CAM methods among medical professionals is unsatisfactory. The gap that has been created in the Polish health care system opens the field for abuse. Poor knowledge about the popularity of CAM therapies among oncological patients in Poland led us to the evaluation of their prevalence and features. Aim of the research:To assess the prevalence of CAM procedures and their impact on conventional cancer treatment in Poland. Material and methods: A cross-sectional study was conducted in the Lower Silesian Oncology Centre, Poland. The final research group came to 355 respondents (209 women, 146 men, response rate 58%). Inclusion criteria comprised the following: diagnosed cancer, staged from early to advanced, and ongoing conventional treatment. Exclusion criteria were as follows: incomplete diagnostic path for cancer, age below 18 years, and complete remission of the disease. Results: CAM methods were used by 156 (43.9%) patients. The most popular were herbal drugs (50.6%), linseed (49.4%), and apricot seeds (32.7%). Approximately 40% of patients informed their doctor about CAM usage. More than 7% had resigned from standard treatment in the past. Almost 2% of respondents considered suspending therapy in the future. Factors associated with CAM use were as follows: female gender (51.2% vs. 33.56%; p < 0.05), secondary and higher education (47.1% secondary, 51.8% higher vs. 19.2% primary, 38.46% vocational; p < 0.05), education associated with health care (68.4% vs. 41.0%; p < 0.05). Conclusions: CAM techniques are popular among oncological patients in Poland and are often used on their own. No single factor affecting CAM use was established. Besides oncological treatment, patients should be informed about the effectiveness and the side-effects of CAM and the dangers associated with standard treatment refusal. StreszczenieWprowadzenie: Metody tzw. medycyny komplementarnej i alternatywnej (CAM) zyskują w Polsce na popularności. Wiedza pracowników ochrony zdrowia na ich temat jest niezadowalająca. Powstała w ten sposób luka w polskim systemie opieki zdrowotnej stwarza pole do nadużyć. Niedostateczna wiedza na temat rozpowszechnienia terapii CAM wśród pacjentów onkologicznych w Polsce skłoniła nas do oceny ich popularności i cech charakterystycznych. Cel pracy: Ocena popularności technik CAM oraz ich wpływu na konwencjonalne leczenie onkologiczne w Polsce. Materiał i metody: Badanie przekrojowe przeprowadzono w Dolnośląskim Centrum Onkologii. Ostateczna grupa badana liczyła 355 osób (209 kobiet, 146 mężczyzn, odsetek odpowiedzi 58%). Kryteria włączenia obejmowały: rozpoznany nowotwór, stadium od wczesnego do zaawansowanego, trwające leczenie onkologiczne. Kryteriami wykluczenia były: niepełna ścieżka diagnostyczna nowotworu, wiek poniżej 18 lat, całkowita remisja choroby.

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Section: Discussionsupporting

confidence: 78%

The prevalence of complementary and alternative methods and their impact on conventional cancer treatment among oncological patients in Poland – an institutional study

Reszka¹,

Moskal²,

Remiorz³

et al. 2021

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“…General health information refers to common medical and health information, which is usually open to the public and can be easily obtained by the masses, such as information on doctors and hospitals, prices of medicines, and features of a specific disease. Special health information is usually concerned with privacy, which refers to personal empirical information, including medical records, treatment, and personal health conditions [15].…”

Section: Information-sharing Behaviors In Online Patient Communitiesmentioning

confidence: 99%

Patients’ Willingness to Share Information in Online Patient Communities: Questionnaire Study

Zhu¹,

Shen²,

Xu³

2020

J Med Internet Res

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Background Online patient communities provide new channels for users to access and share medical information. In-depth study of users’ willingness to share information in online patient communities is of great significance for improving the level of information sharing among the patient community and the long-term development of communities. Objective The aim of this study was to build a model of factors affecting patients’ willingness to share medical information from the perspective of both positive and negative utilities. Specifically, we aimed to determine the influence of online information support and privacy concerns, as well as the moderating effect of disease severity and information sensitivity of different patients on their willingness to share. Methods Data from 490 users with experience in online patient communities were collected through a questionnaire survey, and structural equations were applied to empirically verify the model hypotheses. Results Privacy concerns negatively affected the patients’ willingness to share information (P<.001), whereas online information support positively affected patients’ willingness to share information (P<.001), and information sensitivity negatively moderated the impact of online information support on sharing willingness (P=.01). Disease severity positively moderated the impact of privacy concerns on sharing willingness (P=.05). However, the hypotheses that information sensitivity is a negative moderator and disease severity is a positive moderator of the impact of privacy concerns on sharing willingness could not be supported. Conclusions To improve the level of user information sharing, the online patient community should design a safe user registration process, ensure the confidentiality of information, reduce the privacy concerns of users, and accurately identify the information needs of patients to provide personalized support services.

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“…Numerous studies discussed how social media acts as a vehicle for the spread of misinformation about CAM [34,35,42,47,48,53]. For example, since the onset of the COVID-19 pandemic, the amount and popularity of tweets suggesting a link between spinal manipulation therapy (SMT) and immunity increased substantially [34].…”

Section: Theme 2: Misinformation About Cam On Social Mediamentioning

confidence: 99%

“…Furthermore, posts about CAM on breast cancer patient social forums and Facebook groups have raised critical concerns about the reliability of information accessible to patients [42]. For example, it was found that some patients test CAM therapies that have not yet been proven or whose manufacturing quality have not been veri ed [42]. Additionally, information that is potentially dangerous can be shared on social media and avoid review from regulatory and monitoring systems [42].…”

Section: Theme 2: Misinformation About Cam On Social Mediamentioning

confidence: 99%

How is Social Media Used in the Context of Complementary and Alternative Medicine? A Scoping Review

Verhoeff

Steen

2021

Preprint

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Background Despite the increased use of social media to share health-related information and the substantial impact that complementary and alternative medicine (CAM) can have on individuals’ health and wellbeing, currently, to our knowledge, there is no review that compiles research on how social media is used in the context of CAM. The objective of this study was to summarize the research on how social media is used in the context of CAM. Methods A scoping review was conducted to investigate how social media is used in the context of CAM, following Arksey and O’Malley’s five-stage methodological framework. MEDLINE, EMBASE, PsycINFO, AMED, and CINAHL databases were systematically searched, in addition to the Canadian Agency for Drugs and Technology in Health (CADTH) website. Eligible articles had to have investigated how at least one social media platform is used in the context of a single or multiple types of CAM treatments. Results Searches retrieved 1714 items following deduplication, of which 1687 titles and abstracts were eliminated, leaving 94 full-text articles to be considered. Of those, 65 were not eligible, leaving a total of 29 articles eligible for review. Four themes emerged from our analysis: 1) social media is used to share user/practitioner beliefs, attitudes, and experiences about CAM, 2) social media acts as a vehicle for the spread of misinformation about CAM, 3) there are unique challenges with social media research in the context of CAM, 4) social media is effective in delivering CAM-related therapy and information. Conclusions This scoping review is the first, to our knowledge, to provide a descriptive analysis of the literature regarding how social media is used in the context of CAM. In addition to social media being a useful tool to share user/practitioner beliefs, attitudes, and experiences about CAM, it has shown to be accessible, effective, and a viable option in delivering CAM therapies and information. Social media has also shown to spread a large amount of misleading and false information in the context of CAM. Additionally, this review highlights the challenges with conducting social media research in the context of CAM, particularly in collecting a representative sample.

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Complementary and Alternative Medicine in Patients With Breast Cancer: Exploratory Study of Social Network Forum Data

Cited by 19 publications

References 39 publications

The prevalence of complementary and alternative methods and their impact on conventional cancer treatment among oncological patients in Poland – an institutional study

The prevalence of complementary and alternative methods and their impact on conventional cancer treatment among oncological patients in Poland – an institutional study

Patients’ Willingness to Share Information in Online Patient Communities: Questionnaire Study

How is Social Media Used in the Context of Complementary and Alternative Medicine? A Scoping Review

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