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Patient Perspectives in Geographic Atrophy (GA): Exploratory Qualitative Research to Understand the Impact of GA for Patients and Their Families

ABSTRACT: Background: Age-related macular degeneration (AMD) is the major cause of blindness for the older population in the developed world. Geographic atrophy (GA) is an advanced form of AMD. This progressive degenerative disease causes loss of visual function but unlike exudative AMD there are currently no approved therapeutic treatments for GA. Instead management of the condition is through supportive care. The aim of this study was to conduct exploratory qualitative research to develop a further understanding specifically of the impact of geographic atrophy (GA) on the quality of life for both patients and their families and to explore the resources GA patients most frequently access. Methods: Two focus groups were conducted where participants were assigned to the ‘better’ or ‘worse’ group based upon their level of visual acuity. The data were analysed using the principles of thematic analysis. Transcripts were coded using an a priori framework. Emerging themes and subthemes were added, and transcripts recoded to reflect this. Transcripts were coded by one researcher, and the emerging themes and subthemes discussed and agreed prior to transcript recoding. Results: Nine participants were recruited to the study (n = 5 ‘better group’ and n = 4 ‘worse group’). Six overarching themes were identified. These are: experience of symptoms and understanding of GA; impact on activities; feelings and emotions; relationships and informal support; accessing formal support; and information needs. Conclusion: Key findings indicated that: participants had little knowledge of the mechanisms of GA but were aware of their prognosis; activities impacted by GA included management of daily activities and reading; emotions experienced included fear and frustration, and these frequently crossed over into their relationships with others; and access to formal support was mainly practical and information needs were largely unmet, with peer support being identified as important. Management of GA should include signposting to appropriate support agencies, such as low-vision services and charities.

SUBMITTER: Carlton J

PROVIDER: S-EPMC7510394 | biostudies-literature | 2019 Jan

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. METHODS:We adopted an exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. RESULTS:Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began (e.g., recruitment practices); during research (e.g., data collection and physical exams), and after the research (e.g., secondary use of data and data sharing). Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. CONCLUSIONS:Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research.

Project description:BackgroundPoor medication adherence is an extraordinarily common problem worldwide that contributes to inadequate control of many chronic diseases, including Hypertension (HT). Globally, less than 14% of the estimated 1.4 billion patients with HT achieve optimal control. A myriad of barriers, across patient, healthcare provider, and system levels, contributes to poor medication adherence. Few studies have explored the reasons for poor medication adherence in Tanzania and other African countries.MethodsA qualitative study applying grounded theory principles was conducted in the catchment area of two semi-urban clinics in Dar es Salaam, Tanzania, to determine the perceived barriers to HT medication adherence. Ten key informant interviews were conducted with healthcare providers who manage HT patients. Patients diagnosed with HT (SBP ≥ 140 and DBP ≥ 90), were randomly selected from patient registers, and nine focus group discussions were conducted with a total 34 patients. Inductive codes were developed separately for the two groups, prior to analyzing key thematic ideas with smaller sub-categories.ResultsAffordability of antihypertensive medication and access to care emerged as the most important barriers. Fee subsidies for treatment and medication, along with health insurance, were mentioned as potential solutions to enhance access and adherence. Patient education and quality of physician counseling were mentioned by both providers and patients as major barriers to medication adherence, as most patients were unaware of their HT and often took medications only when symptomatic. Use of local herbal medicines was mentioned as an alternative to medications, as they were inexpensive, available, and culturally acceptable. Patient recommendations for improving adherence included community-based distribution of refills, SMS text reminders, and family support. Reliance on religious leaders over healthcare providers emerged as a potential means to promote adherence in some discussions.ConclusionsEffective management of hypertensive patients for medication adherence will require several context-specific measures. These include policy measures addressing financial access, with medication subsidies for the poor and accessible distribution systems for medication refill; physician measures to improve health provider counseling for patient centric care; and patient-level strategies with reminders for medication adherence in low resource settings.

Project description:BackgroundEven though research integrity (RI) training programs have been developed in the last decades, it is argued that current training practices are not always able to increase RI-related awareness within the scientific community. Defining and understanding the capacities and lacunas of existing RI training are becoming extremely important for developing up-to-date educational practices to tackle present-day challenges. Recommendations on how to implement RI education have been primarily made by selected people with specific RI-related expertise. Those recommendations were developed mainly without consulting a broader audience with no specific RI expertise. Moreover, the academic literature lacks qualitative studies on RI training practices. For these reasons, performing in-depth focus groups with non-RI expert stakeholders are of a primary necessity to understand and outline how RI education should be implemented.MethodsIn this qualitative analysis, different focus groups were conducted to examine stakeholders' perspectives on RI training practices. Five stakeholders' groups, namely publishers and peer reviewers, researchers on RI, RI trainers, PhDs and postdoctoral researchers, and research administrators working within academia, have been identified to have a broader overview of state of the art.ResultsA total of 39 participants participated in five focus group sessions. Eight training-related themes were highlighted during the focus group discussions. The training goals, timing and frequency, customisation, format and teaching approach, mentoring, compulsoriness, certification and evaluation, and RI-related responsibilities were discussed. Although confirming what was already proposed by research integrity experts in terms of timing, frequency, duration, and target audience in organising RI education, participants proposed other possible implementations strategies concerning the teaching approach, researchers' obligations, and development an evaluation-certification system.ConclusionsThis research aims to be a starting point for a better understanding of necessary, definitive, and consistent ways of structuring RI education. The research gives an overview of what has to be considered needed in planning RI training sessions regarding objectives, organisation, and teaching approach.

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Patient Perspectives in Geographic Atrophy (GA): Exploratory Qualitative Research to Understand the Impact of GA for Patients and Their Families

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