The Role of Online Support for Anaplastic Thyroid Cancer Patients and Survivors

The rate of thyroid cancer diagnosis has risen, and researchers\u27 findings point to improved diagnostic testing and overdiagnosis as well as increases in actual incidences as the reasons behind this rise. With improved treatments and testing methods, the number of thyroid cancer survivors has also increased. Thyroid cancer presents challenges to coping and can cause significant stress in an individual\u27s life. More specifically, anaplastic thyroid cancer (ATC) creates complicated challenges for patients and survivors. The problem is patients need support during diagnosis and treatment when adjusting to their \u27new normal\u27 and may be reaching to Internet based social support groups to gain health information. Lazarus\u27s transactional theory of stress and coping formed a framework for this generic qualitative exploration of the types of support and information ATC patients and survivors receive through participating in an online Facebook support group. Thematic content analysis was conducted on archival data collected from the group over 4 months, namely 2,384 posts created by 166 group members. From this analysis, a picture relevant to all group participants was developed to include themes found among the data. Themes of emotional, informational and spiritual support emerged as well as the significance of using emojis as symbolic expressions of support. Implications for social change include expanding the theoretical knowledge of the ATC patient and survivor experience and the types of support available in online environments. This knowledge can lead to positive social change in terms of improving support resources, which may help in recovery from ATC; lessening the burden on patients, families, providers, insurance, the healthcare system, and our society as a whole

Cancer patients' effort to return to normal life: A hermeneutic study

Understanding the informational needs of cancer patients is a requirement to plan any educative care program for them. The aim of this study was to identify Iranian cancer patients’ perceptions of informational needs. The study took a qualitative approach. Semi-structured interviews were held with 25 cancer patients in two teaching hospitals in Iran. Transcripts of the interviews underwent conventional content analysis, and categories were extracted. The results came under two main categories: disease-related informational needs and information needs related to daily life. Disease-related informational needs had two subcategories: obtaining information about the nature of disease and obtaining information about disease prognosis. Information needs related to daily life also had two subcategories: obtaining information about healthy lifestyle and obtaining information about regular activities of daily life. The findings provide deep understanding of cancer patients’ informational needs in Iran. © 2015, American Association for Cancer Education

Utilizing Digital Health to Collect Electronic Patient-Reported Outcomes in Prostate Cancer: Single-Arm Pilot Trial

Background: Measuring patient-reported outcomes (PROs) requires an individual’s perspective on their symptoms, functional status, and quality of life. Digital health enables remote electronic PRO (ePRO) assessments as a clinical decision support tool to facilitate meaningful provider interactions and personalized treatment. Objective: This study explored the feasibility and acceptability of collecting ePROs using validated health-related quality of life (HRQoL) questionnaires for prostate cancer. Methods: Using Apple ResearchKit software, the Strength Through Insight app was created with content from validated HRQoL tools 26-item Expanded Prostate Cancer Index Composite (EPIC) or EPIC for Clinical Practice and 8-item Functional Assessment of Cancer Therapy Advanced Prostate Symptom Index. In a single-arm pilot study with patients receiving prostate cancer treatment at Thomas Jefferson University Hospital and affiliates, participants were recruited, and instructed to download Strength Through Insight and complete ePROs once a week over 12 weeks. A mixed methods approach, including qualitative pre- and poststudy interviews, was used to evaluate the feasibility and acceptability of Strength Through Insight for the collection and care management of cancer treatment. Results: Thirty patients consented to the study; 1 patient failed to complete any of the questionnaires and was left out of the analysis of the intervention. Moreover, 86% (25/29) reached satisfactory questionnaire completion (defined as completion of 60% of weekly questions over 12 weeks). The lower bound of the exact one-sided 95% CI was 71%, exceeding the 70% feasibility threshold. Most participants self-identified with having a high digital literacy level (defined as the ability to use, understand, evaluate, and analyze information from multiple formats from a variety of digital sources), and only a few participants identified with having a low digital literacy level (defined as only having the ability to gather information on the Web). Interviews were thematically analyzed to reveal the following: (1) value of emotional support and wellness in cancer treatment, (2) rise of social patient advocacy in online patient communities and networks, (3) patient concerns over privacy, and (4) desire for personalized engagement tools. Conclusions: Strength Through Insight was demonstrated as a feasible and acceptable method of data collection for ePROs. A high compliance rate confirmed the app as a reliable tool for patients with localized and advanced prostate cancer. Nearly all participants reported that using the smartphone app is easier than or equivalent to the traditional paper-and-pen approach, providing evidence of acceptability and support for the use of remote PRO monitoring. This study expands on current research involving the value of digital health, as a social and behavioral science, augmented with technology, can begin to contribute to population health management, as it shapes psychographic segmentation by demographic, socioeconomic, health condition, or behavioral factors to group patients by their distinct personalities and motivations, which influence their choices

Cancer Patients’ Informational Needs: Qualitative Content Analysis

Understanding the informational needs of cancer patients is a requirement to plan any educative care program for them. The aim of this study was to identify Iranian cancer patients’ perceptions of informational needs. The study took a qualitative approach. Semi-structured interviews were held with 25 cancer patients in two teaching hospitals in Iran. Transcripts of the interviews underwent conventional content analysis, and categories were extracted. The results came under two main categories: disease-related informational needs and information needs related to daily life. Disease-related informational needs had two subcategories: obtaining information about the nature of disease and obtaining information about disease prognosis. Information needs related to daily life also had two subcategories: obtaining information about healthy lifestyle and obtaining information about regular activities of daily life. The findings provide deep understanding of cancer patients’ informational needs in Iran

The Interpersonal Dimension of Online Patient Forums: How Patients Manage Informational and Relational Aspects in Response to Posted Questions

The internet has revolutionised the ways in which patients acquire medical information, a development which has clearly been welcomed by patients: seeking out health information online is now the third most popular activity after internet searches and e-mail (Timimi 2012). However, it has led to concerns about the quality of the information, the ability of lay people to understand it (Gerber/Eiser 2001) as well as potential cyberchondria (Starcevic/Berle 2013). In light of these conflicting perspectives, this paper examines one such source of online information, namely, the patient forum where patients communicate with other patients about a particular medical condition. Although doctor-patient communication in the clinical situation has been extensively researched, little is known about how patient-patient communication is managed in online situations such as patient forums. The purpose of this paper is to contribute to research in that relatively un-researched area by examining how patients manage relational and informational aspects of communication in online patient forums. Whilst a typical interactional structure of the patient forum exchange is question and answer, we focus on responses to questions on patient forums.This paper reports on the findings of a thematic analysis (Braun/Clarke 2006) of an online thyroid disease patient forum, investigating how interpersonal aspects are negotiated where patients share condition-related knowledge. We identify themes that relate both to informational and relational aspects as well as themes that fit under a new category which we call ‘info-relational’ as it subsumes informational and relational elements. We discuss a number of theoretical implications, which are valuable as existing health communication models and understandings of patient expertise have yet to catch up with the effects of new media such as online patient forums

Distress in long-term head and neck cancer carers: a qualitative studyof carers’ perspectives

Aims and objectives: To identify and describe the triggers of emotional distress among long‐term caregivers (more than 1 year postdiagnosis) of people with head and neck cancer. Background: Limited research has been conducted on the factors that cause head and neck cancer caregivers to become distressed. Design: Qualitative cross‐sectional. Methods: In‐depth semi‐structured interviews. Interviews were conducted via telephone. The study setting was the Republic of Ireland. Results: Interviews were conducted with 31 long‐term caregivers (mean time since diagnosis 5·7 years, SD 2·9 years). Head and neck cancer caregivers experienced significant distress. Six key triggers of emotional distress were identified: understandings and fears of illness, lifestyle restrictions and competing demands, facial disfigurement, financial problems, comorbid health problems and witnessing suffering. Cutting across all of these individual causes of distress was a strong feeling of loss caused by head and neck cancer. Conclusions: Some head and neck cancer caregivers became considerably distressed by their caring role. Although distress appears to decline with time for many caregivers, some continue to be distressed for years following the patient's diagnosis. It would be useful for future research to explicitly investigate caregivers' experiences of lo

Patient and clinician perspectives of information needs concerning oral epithelial dysplasia

OBJECTIVES: Individuals diagnosed with a chronic oral disease that increase the risk of mouth cancer, such as oral epithelial dysplasia (OED), require appropriate knowledge to make informed decisions. The present study aimed to assess whether patient information needs of a group of patients concerning dysplasia were met and to what degree clinicians agree with patients on 'important' topics. SUBJECTS AND METHODS: This represented secondary analyses of a cross-sectional study to assess the information needs of 86 patients diagnosed with dysplasia compared with those of 77 clinicians using the validated OED Information Needs Questionnaire. Descriptive, concordance and regression analyses were performed for the collected data. RESULTS: The mean and median total scores for all items in the amount of information received subscale were 2.33 and 2.44, indicating overall unmet needs concerning dysplasia. Clinicians were generally able to predict topics of greatest importance to patients, although their scores were mainly lower than those of patients (k = 0.06). There was a higher agreement between patients (k = 0.25) than clinicians (k = 0.09). CONCLUSION: Clinicians are encouraged to assess a patient's information needs to ensure tailored and patient-centred communication concerning OED during all clinical consultations

Supporting people with active and advanced disease: a rapid review of the evidence

1.1 Background: the NCSI AAD group The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people. 1.2 Aims of this review This project set out to meet the following aim: To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease