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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:PurposeTo assess different microperimetry (MP) macular sensitivity outcome measures capturing functional deterioration in eyes with geographic atrophy (GA) secondary to age-related macular degeneration (AMD).DesignPatients were included from 2 identically designed, phase III, double-masked, randomized controlled clinical trials, Chroma (NCT02247479) and Spectri (NCT02247531).ParticipantsPatients enrolled were aged ≥ 50 years with bilateral GA and no evidence of previous or active neovascular AMD.MethodsPatients were randomized 2:1:2:1 to receive through 96 weeks intravitreal lampalizumab 10 mg every 4 weeks (LQ4W), every 6 weeks (LQ6W), or corresponding sham procedures. For this study, mesopic macular sensitivity of the central 20° was assessed using MP-1 microperimeter at selected sites.Main outcome measuresTwo exploratory endpoints were developed, namely perilesional sensitivity (average of points adjacent to absolute scotomatous points) and responding sensitivity (average of all nonscotomatous points; > 0 dB at baseline) by using customized masks for each patient. These were compared with conventional MP endpoints (mean macular sensitivity and number of absolute scotomatous points).ResultsOf 1881 Chroma and Spectri participants, 277 agreed to participate in the present study. Of these, 197 (LQ4W, n = 63; LQ6W, n = 68; pooled sham, n = 66) had reliable MP results. Enlargement of GA lesion area by approximately 2 mm2/year across treatment groups was accompanied by deterioration in all MP parameters. There was no difference in worsening of macular sensitivity or absolute scotomatous points among treatment groups. Perilesional and responding sensitivities showed greater decline over time than mean macular sensitivity. Change in GA lesion area at week 48 showed better correlation with perilesional sensitivity (r = -0.17) and responding sensitivity (r = -0.20) than mean macular sensitivity (r = -0.03), while the correlation was highest with the number of absolute scotomatous points (r = 0.37).ConclusionsPerilesional or responding macular sensitivity measured by MP should be considered more sensitive endpoints than mean macular sensitivity for monitoring functional decline over time in GA. Although perilesional, responding, and mean macular sensitivity had weak correlation with GA lesion area, the number of absolute scotomatous points may provide additional information on the anatomic/functional correlation.Financial disclosuresProprietary or commercial disclosure may be found after the references.

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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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