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The balancing perspective of hard-to-reach hepatitis C patients who were lost to follow-up: A qualitative study.

ABSTRACT: BACKGROUND:In the foreseeable future, patients with hepatitis C virus (HCV) with good healthcare access will all have been cured and the lost to follow-up (LFU) HCV-population will increasingly exist of hard-to-reach patients. Efforts to retrieve these individuals with HCV have been moderately successful so far. A deeper understanding of the reasons for loss to follow-up and the underlying processes is lacking. AIMS:To explore reasons for previous loss to follow-up in patients with HCV who have been brought back into care. METHODS:In 2017, fifteen patients with HCV who were evaluated at the University Medical Center Utrecht (UMCU) Infectious diseases outpatient clinic as part of the "REtrieval And cure of Chronic Hepatitis C" (REACH)-project were included in this study through convenience sampling. Face-to-face semi-structured in-depth interviews were conducted and a qualitative analysis based on the grounded theory was applied. RESULTS:A basic socio- psychological process named "maintaining the achieved balance" was uncovered in patients with HCV who were LFU. This "achieved balance" is the result of a transformative process following the initial HCV diagnosis. It is a steadfast stance in which participants keep HCV out of sight and in the margin of their lives in order to reestablish an optimal state of well-being. The balancing perspective is subsequently defended by repeated evasive behavioral patterns to avoid confrontation with the disease. CONCLUSION:The balancing perspective gives insight into why individuals with HCV were not retained in care but also why they remained LFU thereafter. Physicians should realize that this mindset can be persistent and repeated efforts may be needed to finally trace and retrieve these patients.

SUBMITTER: Kracht PAM

PROVIDER: S-EPMC7153871 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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The balancing perspective of hard-to-reach hepatitis C patients who were lost to follow-up: A qualitative study.

Kracht Patricia A M PAM Arends Joop E JE Hoepelman Andy I M AIM Vervoort Sigrid C J M SCJM

PloS one 20200413 4

<h4>Background</h4>In the foreseeable future, patients with hepatitis C virus (HCV) with good healthcare access will all have been cured and the lost to follow-up (LFU) HCV-population will increasingly exist of hard-to-reach patients. Efforts to retrieve these individuals with HCV have been moderately successful so far. A deeper understanding of the reasons for loss to follow-up and the underlying processes is lacking.<h4>Aims</h4>To explore reasons for previous loss to follow-up in patients wit ...[more]

PMID: 32282805

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Project description:BackgroundLoss to follow-up (LTFU) is an unsuccessful treatment outcome for tuberculosis (TB) patients. In Malaysia, LTFU affects around 1 in 20 TB patients. Integration of qualitative research methods and evidence will provide a better understanding of LTFU and its underlying issues. In this study, we qualitatively explored TB patients' experiences in receiving treatment and their reasons for leaving TB care.MethodIn-depth interviews of 15 patients with a history of LTFU were conducted from January to September 2020. Interview guides were developed to explore TB patients' experiences while receiving treatment, including challenges faced and reasons for treatment interruption. Data were thematically analysed using the framework method.ResultsWe identified 11 emerging themes that occurred at four levels of interaction with TB patients. First, at the patient personal level, TB beliefs referring to patients' perception of illness and wellness, patients' perceived role of traditional and complementary medicine, and substance abuse were important. Second, the healthcare system and treatment factors that were highlighted included the organisation of care and treatment, interaction with healthcare professionals, particularly in communication and counselling, and TB medications' side effects. Third, structural factors including financial burden, logistical and transportation issues and work-related factors were identified to be barriers to treatment continuation. Fourth, the interpersonal level interaction of patients should not be neglected; this includes family relationships and support as well as peer influence.ConclusionStudy findings put forth issues and challenges faced by TB patients while receiving treatment and underscore areas where actions can be taken. This will contribute to informing the development and implementation of future TB control strategies that are responsive to TB patients' needs and concerns, to effectively address LTFU and ensure better treatment completion rates among TB patients in Malaysia.

Project description:Long-term outcome studies are frequently hindered by a decreasing frequency of patient follow-up with the treating surgeon over time. Whether this attrition represents a "loss of faith" in their index surgeon or the realities of a geographically mobile society has never been assessed in a population of patients undergoing spinal surgery. The purpose of this article is to determine the frequency with which patients who have undergone prior surgery and develop new problems attempt to follow-up with their index spine surgeon. The study design was a population survey. All patients seen at two university-based spine centers over a 3-month period were surveyed regarding prior spine surgery. The questionnaire asked details of the previous operation, whether the patient had sought follow-up with their index surgeon, why the patient did not continue treatment with that surgeon, and whether the patient was satisfied with their prior treatment. Sixty-nine patients completed the survey. Prior operations were lumbar (53 patients) and cervical (16). When asked the reason for not seeing their prior surgeon, 10 patients (15%) stated that they (the patient) had moved and 16 (23%) responded that their surgeon no longer practiced in the area. Thirteen (19%) were unhappy with their previous care, 22 (32%) were seeking a second opinion, and 7 (10%) were told they needed more complex surgery. Thirty-seven (54%) discussed their symptoms with their original surgeon before seeking another surgeon. Although 32 patients (46%) had not discussed their new complaints with their index surgeon, only 3 patients (4%) chose not to return to their prior surgeon despite having the opportunity to do so. Forty-nine patients (71%) were satisfied with their prior surgical care, and 42 patients (61%) would undergo the index operation again. Most of the patients seen at the authors' practices after undergoing prior spine surgery elsewhere failed to follow up with their prior spine surgeon for geographical reasons. It appears that the majority of patients who develop new spinal complaints will seek out their treating surgeon when possible. This suggests that patient attrition over long-term follow-up may reflect a geographically mobile population rather than patient dissatisfaction with prior treatment.

Project description:BackgroundIncomplete ascertainment of outcomes in randomized controlled trials (RCTs) is likely to bias final study results if reasons for unavailability of patient data are associated with the outcome of interest. The primary objective of this study is to assess the potential impact of loss to follow-up on the estimates of treatment effect. The secondary objectives are to describe, for published RCTs, (1) the reporting of loss to follow-up information, (2) the analytic methods used for handling loss to follow-up information, and (3) the extent of reported loss to follow-up.MethodsWe will conduct a systematic review of reports of RCTs recently published in five top general medical journals. Eligible RCTs will demonstrate statistically significant effect estimates with respect to primary outcomes that are patient-important and expressed as binary data. Teams of 2 reviewers will independently determine eligibility and extract relevant information from each eligible trial using standardized, pre-piloted forms. To assess the potential impact of loss to follow-up on the estimates of treatment effect we will, for varying assumptions about the outcomes of participants lost to follow-up (LTFU), calculate (1) the percentage of RCTs that lose statistical significance and (2) the mean change in effect estimate across RCTs. The different assumptions we will test are the following: (1) none of the LTFU participants had the event; (2) all LTFU participants had the event; (3) all LTFU participants in the treatment group had the event; none of those in the control group had it (worst case scenario); (4) the event incidence among LTFU participants (relative to observed participants) increased, with a higher relative increase in the intervention group; and (5) the event incidence among LTFU participants (relative to observed participants) increased in the intervention group and decreased in the control group.DiscussionWe aim to make our objectives and methods transparent. The results of this study may have important implications for both clinical trialists and users of the medical literature.

Project description:BackgroundLost to follow-up (LTF) represents an understudied barrier to effective management of chronic subdural hematoma (cSDH). Understanding the factors associated with LTF after surgical treatment of cSDH could uncover pathways for quality improvement efforts and modify discharge planning. We sought to identify the demographic and clinical factors associated with patient LTF.MethodsA single-institution, retrospective cohort study of patients treated surgically for convexity cSDH from 2009 to 2019 was conducted. The primary outcome was LTF, with neurosurgical readmission as the secondary outcome. Univariate analysis was conducted using the student-t test and χ2 test. Multivariate logistic regression was performed to identify the factors associated with LTF and neurosurgical readmission.ResultsA total of 139 patients were included, 29% of whom were LTF. The mean first postoperative follow-up duration was 60 days. On univariate analysis, uninsured/Medicaid coverage was associated with increased LTF compared with private insurance/Medicare coverage (62.5% vs. 41.4%; P = 0.039). A higher discharge modified Rankin scale score was also associated with LTF (3.7 vs. 3.5; P < 0.001). On multivariate analysis, uninsured/Medicaid patients had a significantly greater risk of LTF compared with private insurance/Medicare patients (odds ratio, 2.44; 95% confidence interval, 1.13-5.23; P = 0.022). LTF was independently associated with an increased risk of neurosurgical readmission (odds ratio, 1.94; 95% confidence interval, 1.17-3.24; P = 0.011).ConclusionsUninsured and Medicaid patients had a greater likelihood of LTF compared with private insurance and Medicare patients. LTF was further associated with an increased risk of neurosurgical readmission. The results from the present study emphasize the need to address barriers to follow-up to reduce readmission after surgery for cSDH. These findings could inform improved discharge planning, such as predischarge repeat imaging studies and postdischarge contact.

Dataset Information

The balancing perspective of hard-to-reach hepatitis C patients who were lost to follow-up: A qualitative study.

Publications

The balancing perspective of hard-to-reach hepatitis C patients who were lost to follow-up: A qualitative study.

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