Patient Needs, Perceptions, and Attitudinal Drivers Associated with Obesity: A Qualitative Online Bulletin Board Study

Cook, Nigel S.; Tripathi, P.; Weiss, Olivia; Walda, Susann; George, Aneesh Thomas; Bushell, A.

doi:10.1007/s12325-019-00900-1

Cited by 12 publications

(15 citation statements)

References 33 publications

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“…OBB online bulletin board, SML social media listening the study [12,19]. When the participating patients were contacted for debriefing at the end of the OBB session, the patients expressed agreement with the conclusions derived from the discussions and also expressed that they were very engaged throughout their participation in the study.…”

Section: Obbmentioning

confidence: 92%

Gathering Structured Patient Insight to Drive the PRO Strategy in COPD: Patient-Centric Drug Development from Theory to Practice

et al. 2019

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We illustrate our experience of gathering patient insights on the most patient-relevant symptoms in chronic obstructive pulmonary disease (COPD) via a structured and systematic approach towards 'patient-centric' drug development, leveraging recent advances in digital technologies using online platforms. The fourstep approach comprised the following: literature search, social media listening (SML) study, online bulletin board (OBB) exercise, and design of an online patient preference study (PPS). The initial online studies (SML and OBB) revealed that, besides dyspnoea and exacerbations, patients perceive cough and mucus production as equally important aspects of disease management for COPD. To further build and quantify patients' understanding of the importance of these symptoms, an online patient preference survey is underway. Based on these findings, we have elected to include the Cough and Sputum Assessment Questionnaire or CASA-Q, a validated instrument to collect patient-reported outcomes (PRO), besides the use of the COPD assessment test or CAT to assess the severity and impact of COPD in drug development studies for COPD. Additionally, to capture movement and sleep disturbance, we consider the inclusion of actigraphy as a digital evidence-capture end point. Lastly, in a phase II trial, a survey questionnaire on incontinence will be administered to evaluate the importance of this issue among patients. We believe that integrating insights derived from ''online'' studies (SML, OBB, and PPS) into drug development offers an opportunity to truly listen to patients' voices in early product design ensuring relevance of end points selected for the clinical trial program. This approach also has the potential to complement conventional qualitative and quantitative data collection requirements for PRO instrument development. While awaiting final guidance from the US Food and Drug Administration, or FDA, the recently released draft documents on collecting representative patients' input reference social media as a tool to collect qualitative patient preference data and these developments suggest that patient preference data can influence future clinical trial design, end point selection, and regulatory reviews.

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Section: Obbmentioning

confidence: 92%

Gathering Structured Patient Insight to Drive the PRO Strategy in COPD: Patient-Centric Drug Development from Theory to Practice

et al. 2019

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“…Qualitative research methods have often been considered complementary to quantitative methods and prudent use of such approaches may help develop a broader understanding of clinical realities [45]. We demonstrated that the OBB, being an asynchronous, moderated, closed online community platform, offers an optimal means to uncover patient insights for qualitative patient research, with both more common and rare disease patient populations [27][28][29]46].…”

Section: Discussionmentioning

confidence: 93%

“…In this study, we used a qualitative OBB methodology to generate patient insights into disease perception, management and unmet needs associated with PVNS [27][28][29]. In our study, all the participants unanimously expressed that pain was a significant factor for emotional and psychological burden.…”

Section: Discussionmentioning

confidence: 99%

“…Online bulletin boards (OBBs) provide an ideal opportunity to seek information, advice and opinions from individuals experiencing the same health problems and can serve as an important source of health-related information [20,26]. A number of studies have shown the utility of online focus group technique and asynchronous platforms (e.g., community discussion boards) to study various diseases and health-related issues in different disease conditions [27][28][29]; however, we had not previously used this approach with a rare disease patient population. Hence, we conducted a qualitative study using an OBB methodology to understand how PVNS patients perceive their disease and what the unmet needs or expectations are that could inform the development and design of a future drug treatment.…”

Section: Introductionmentioning

confidence: 99%

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Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study

et al. 2020

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Introduction: Pigmented villonodular synovitis (PVNS), also known as giant-cell tumour of the tendon sheath (GCTT), is a rare, benign proliferative tumour affecting the inner lining of synovial joints and tendon sheets. Information on treatment needs of PVNS patients to inform drug development is currently scarce. We conducted an exploratory qualitative study with PVNS patients to generate insights into the objective and emotional aspects related to their medical journey and experiences of living with this disease. Methods: A 4-day study using an online bulletin board (OBB), an asynchronous, online qualitative research platform, was conducted with patients recruited via physician referral who underwent screening questions to ensure eligibility for the study and willingness to participate. The discussion was moderated, was structured and allowed open answers in response to other participants' posts. Results: Eleven patients (4 from the USA, 4 from the UK and 3 from Canada; 45% female), aged 28-57 years, suffering from PVNS for 2-27 years participated in the study. Key patient insights from the study were: (1) pain was the topmost, spontaneous thought that the participants associated with PVNS, constituting a significant emotional and psychological burden; (2) surgery (arthroscopy) did not completely ameliorate symptoms associated with PVNS, as the relapse rate was high in these patients; (3) PVNS has a substantial negative financial impact on patients, their families and the healthcare system; (4) orthopaedic specialists/surgeons predominantly managed PVNS, as surgery is currently the only therapeutic option. Conclusion: PVNS patients expressed an urgent need for a medical drug treatment, which can reduce pain, avoid relapses and provide an alternative to surgery, the current standard of care.

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“…As the interest and needs of patients vary with different types of chronic diseases, the topics involved in these discussion forums should also be based on the interests of the population group being targeted. For instance, Lanoye et al [ 59 ] found the importance of discussing the stigma and peer pressure related to obesity within a young adult population, whereas Cook et al [ 60 ] found that emotional support and use of medication are priorities in an older population with obesity. Therefore, the demographic background [ 11 , 61 , 62 ] and type of chronic diseases [ 7 ] are all factors potentially influencing the acceptability of a feature and should be considered when designing and evaluating web-based interventions.…”

Section: Discussionmentioning

confidence: 99%

Understanding Self-Guided Web-Based Educational Interventions for Patients With Chronic Health Conditions: Systematic Review of Intervention Features and Adherence

Xie¹,

Itzkovitz²,

Roy‐Fleming³

et al. 2020

J Med Internet Res

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Background Chronic diseases contribute to 71% of deaths worldwide every year, and an estimated 15 million people between the ages of 30 and 69 years die mainly because of cardiovascular disease, cancer, chronic respiratory diseases, or diabetes. Web-based educational interventions may facilitate disease management. These are also considered to be a flexible and low-cost method to deliver tailored information to patients. Previous studies concluded that the implementation of different features and the degree of adherence to the intervention are key factors in determining the success of the intervention. However, limited research has been conducted to understand the acceptability of specific features and user adherence to self-guided web interventions. Objective This systematic review aims to understand how web-based intervention features are evaluated, to investigate their acceptability, and to describe how adherence to web-based self-guided interventions is defined and measured. Methods Studies published on self-guided web-based educational interventions for people (≥14 years old) with chronic health conditions published between January 2005 and June 2020 were reviewed following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Statement protocol. The search was performed using the PubMed, Cochrane Library, and EMBASE (Excerpta Medica dataBASE) databases; the reference lists of the selected articles were also reviewed. The comparison of the interventions and analysis of the features were based on the published content from the selected articles. Results A total of 20 studies were included. Seven principal features were identified, with goal setting, self-monitoring, and feedback being the most frequently used. The acceptability of the features was measured based on the comments collected from users, their association with clinical outcomes, or device adherence. The use of quizzes was positively reported by participants. Self-monitoring, goal setting, feedback, and discussion forums yielded mixed results. The negative acceptability was related to the choice of the discussion topic, lack of face-to-face contact, and technical issues. This review shows that the evaluation of adherence to educational interventions was inconsistent among the studies, limiting comparisons. A clear definition of adherence to an intervention is lacking. Conclusions Although limited information was available, it appears that features related to interaction and personalization are important for improving clinical outcomes and users’ experience. When designing web-based interventions, the selection of features should be based on the targeted population’s needs, the balance between positive and negative impacts of having human involvement in the intervention, and the reduction of technical barriers. There is a lack of consensus on the method of evaluating adherence to an intervention. Both investigations of the acceptability features and adherence should be considered when designing and evaluating web-based interventions. A proof-of-concept or pilot study would be useful for establishing the required level of engagement needed to define adherence.

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Patient Needs, Perceptions, and Attitudinal Drivers Associated with Obesity: A Qualitative Online Bulletin Board Study

Cited by 12 publications

References 33 publications

Gathering Structured Patient Insight to Drive the PRO Strategy in COPD: Patient-Centric Drug Development from Theory to Practice

Gathering Structured Patient Insight to Drive the PRO Strategy in COPD: Patient-Centric Drug Development from Theory to Practice

Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study

Understanding Self-Guided Web-Based Educational Interventions for Patients With Chronic Health Conditions: Systematic Review of Intervention Features and Adherence

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