scholarly journals Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sandra Skogby ◽  
Ewa-Lena Bratt ◽  
Bengt Johansson ◽  
Philip Moons ◽  
Eva Goossens
Keyword(s):  
Young People ◽  
Chronic Conditions ◽  
Time Interval ◽  
Complex Chronic Conditions ◽  
Time Period ◽  
Core Set ◽  
Follow Up Care ◽  
Care Gaps ◽  
Lost To Follow Up

Abstract Background A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up care is not clearly defined, and the great plethora of terms used within this field cannot go unnoticed. Terms such as “lost to follow-up”, “lapses in care” and “care gaps”, are frequently used in published literature, but differences between terms are unclear. Lack of uniformity greatly affects comparability of study findings. The aims of the present study were to (i) provide a systematic overview of terms and definitions used in literature describing discontinuation of follow-up care in young people with CCC’s; (ii) to clarify operational components of discontinuation of follow-up care (iii); to develop conceptual definitions and suggested terms to be used; and (iv) to perform an expert-based evaluation of terms and conceptual definitions. Methods A systematic literature search performed in PubMed was used to provide an overview of current terms used in literature. Using a modified summative content analysis, operational components were analysed, and conceptual definitions were developed. These conceptual definitions were assessed by an expert panel using a survey. Results In total, 47 terms and definitions were retrieved, and a core set of operational components was identified. Three main types of discontinuation of follow-up care emerged from the analysis and expert evaluation, conceptually defined as follows: Lost to follow-up care: “No visit within a defined time period and within a defined context, and the patient is currently no longer engaged in follow-up care”;Gap in follow-up care: “Exceeded time interval between clinic visits within a defined context, and the patient is currently engaged in follow-up care”; andUntraceability: “Failure to make contact due to lack of contact information”. Conclusion By creating a common vocabulary for discontinuation of follow-up care, the quality of future studies could improve. The conceptual definitions and operational components provide guidance to both researchers and healthcare professionals focusing on discontinuation of follow-up care for young people with CCCs.

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

2021 ◽  
pp. 000992282110472
Author(s):  
Andrew Brown ◽  
Mary Quaile ◽  
Hannah Morris ◽  
Dmitry Tumin ◽  
Clayten L. Parker ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Hospital Discharge ◽  
Care Coordination ◽  
Chronic Conditions ◽  
Tertiary Care ◽  
Care Hospital ◽  
Icu Admission ◽  
Complex Chronic Conditions

Objective To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. Methods We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children’s hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. Results Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission ( P = .020) and prolonged length of stay ( P = .004) were associated with decreased likelihood of completing recommended follow-up. Conclusions Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts.

WHO IS LOST TO FOLLOW-UP?

PEDIATRICS ◽  
1989 ◽  
Vol 84 (5) ◽  
pp. A38-A38
Author(s):  
Student
Keyword(s):  
High Risk ◽  
Major Effect ◽  
Dropout Rates ◽  
Time Interval ◽  
Environmental Characteristics ◽  
Developmental Status ◽  
Loss To Follow Up ◽  
High Risk Infants ◽  
Lost To Follow Up

The belief that impaired infants are more likely to continue in follow-up is. . .not supported. The infant's developmental status significantly influenced loss to follow-up only between the 18-to 36-month time interval. Here, more babies in the dubious (vs abnormal) category withdrew. In general our findings suggest that environmental characteristics exert the major effect on dropout rates in high risk infants and their controls.

Follow-up results of myositis patients treated with H. P. Acthar gel

Rheumatology ◽  
2020 ◽  
Vol 59 (10) ◽  
pp. 2976-2981 ◽  
Author(s):  
Didem Saygin ◽  
Chester V Oddis ◽  
Galina Marder ◽  
Siamak Moghadam-Kia ◽  
Preeya Nandkumar ◽  
...  
Keyword(s):  
Standard Dose ◽  
Manual Muscle Testing ◽  
Open Label ◽  
Muscle Testing ◽  
Core Set ◽  
Minimal Improvement ◽  
Definition Of ◽  
Post Trial ◽  
Lost To Follow Up

Abstract Objectives Idiopathic inflammatory myopathies (IIM) are a group of autoimmune diseases characterized by proximal muscle weakness. H. P. Acthar gel [repository corticotropin injection (RCI)] is a formulation of adrenocorticotropic hormone and has been approved by Food and Drug Administration for use in IIM; however, literature is limited. In this study, we report longitudinal follow-up of myositis patients treated with RCI. Methods Patients with refractory IIM who were enrolled in the prospective, open-label RCI trial were included in this study. The post-trial follow-up period was 6 months with assessments every 2 months, which included myositis core set measures including extra-muscular global, muscle and patient global disease activities, HAQ, and manual muscle testing. Results Two patients were lost to follow-up after finalization of the trial, and the remaining eight patients were enrolled in the follow-up study. One patient remained on RCI after the trial. In the follow-up period, four of eight patients had flare at on average 4.1 months after the RCI trial. Among the patients who flared, three required an increase in prednisone. One patient was restarted on RCI at 5.5 months, but had minimal improvement after 3 months. Four patients who remained stable continued to satisfy criteria for the definition of improvement through the 6-month follow-up. However, none showed any further improvement in the primary or secondary efficacy outcomes after the initial RCI trial. Conclusion To our knowledge, this is the first study reporting the follow-up results of patients treated with standard dose and duration of Acthar. We believe that our study will provide the basis for the development of future randomized RCI trials in IIM.

Utilizing network quality committees to improve reporting and adherence to evidence-based clinical pathways.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 76-76
Author(s):  
Debra A. Patt ◽  
J. Russell Hoverman ◽  
Gay Lindsey ◽  
Deedra Jastrzembski ◽  
Cynthia Taniguchi ◽  
...  
Keyword(s):  
Clinical Pathways ◽  
Time Interval ◽  
Evidence Based ◽  
Large Network ◽  
Time Period ◽  
Community Oncology ◽  
Improve Compliance ◽  
Value Based Care ◽  
Based Medicine

76 Background: In an era of evidence based medicine, several different evidence based pathways for cancer treatment exist. Few, however, contain decision support, are implemented into an electronic health record (EHR) or have demonstrated their effectiveness to provide value-based care. Providing systems to make a Pathways program operational and improve adherence supports a culture of value-based care. Methods: Physician designed evidence based pathways for a large network of community oncologists was rolled out over a statewide practice. A team of pharmacists and data managers designed a program to support implementation of this pathways initiative. Physician-led quality committees were created at the practice level to troubleshoot and characterize the process of making adherence operational and improving upon other quality metrics, variance reporting, and patient satisfaction. Treatments were charted in the EHR and available for reporting. Documentation of rationale for off-pathway exceptions was also captured. Assessable data, adherence, and exception documentation were measured prior to the onset of the committees and again with follow-up for 1 year after initiation of the committees from March 2011 through February 2012. Results: Within this large practice of 342 physicians, there were 39 quality committees created. During this time assessable data, adherence, and justification of exceptions to evidence-based pathways changed. At the beginning of the time period, assessable data was 84% and improved to 90% after a year. Adherence to pathways was 60% and improved to 68% over the same time interval. Exception documentation also improved from 14% to 25%. Conclusions: Formalizing an internal physician-driven operational procedure to improve upon quality can increase the reporting and adherence to physician created evidence-based pathways across a network of community oncologists and moves to change a culture of value-based excellence within community oncology practices. Continuous and internally driven adherence to value-based metrics improve compliance over time. Internal systems such as these are essential to make evidence-based pathways operational.

scholarly journals [Value of immunization data analysis at the district level]

1999 ◽  
Vol 5 (3) ◽  
pp. 565-571
Author(s):  
M. S. Soltani
Keyword(s):  
Health Professionals ◽  
Time Interval ◽  
Immunization Schedule ◽  
Improve Performance ◽  
Time Intervals ◽  
Health Centres ◽  
Prevention Programmes ◽  
National Prevention ◽  
Lost To Follow Up

This study aimed to demonstrate the importance of analysing local immunization data to improve performance of national prevention programmes. From the immunization registers kept in basic health centres, we identified 1271 children receiving their first vaccine at 3 months. Examination of the age at the subsequent vaccinations and time intervals between vaccinations showed that 81.9% had received all the vaccines required by the Ministry of Health but only 48.5% had received immunization meeting the requirements for age and time interval. The analysis also helped identify health centres with best performance [fewer children lost to follow-up and better implementation of immunization schedule]and those vaccinations needing the greatest attention from health professionals

Come back: Identifying targets to engage young adult survivors who have been lost to follow-up.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 29-29 ◽  
Author(s):  
Lynda M. Beaupin ◽  
Anne Boldt ◽  
Katharine Amato
Keyword(s):  
Health Insurance ◽  
Young Adult ◽  
Adult Survivors ◽  
Disease Type ◽  
Age At Diagnosis ◽  
Insurance Status ◽  
Follow Up Care ◽  
Young Adult Survivors ◽  
Lost To Follow Up

29 Background: Despite national survivorship guidelines, follow-up care after treatment has ended is generally lacking for AYA survivors. Our previous pilot study involving 27 AYA in a focus group found that the major barriers to follow-up included loss of health insurance, poor communication with their oncologist, and on-going adjustment challenges. The current study aimed to determine the proportion of young adult survivors who no longer continued with follow-up care at our institution and examine which factors contributed to the lack of follow-up. Our objectives were: 1. Evaluate how many AYAs who completed treatment may be lost to follow up over time; 2. Determine which AYAs are most at risk of being lost to follow-up. Methods: Data Analysis: 1. AYA Survivorship Dataset – Tumor Registry used to include the following: Current age, age at diagnosis (captured those 18 and 39 years of age), gender, date of diagnosis, date of most recent visit, disease type and histology. 2. Compare follow-up appointments and insurance status between two sets of survivors: Cohort A - 852 patients diagnosed between 2010-2014; Cohort B - 783 patients diagnosed between 2005-2009. Results: 2367 AYAs were diagnosed between 2000-2015; 37% did not have a follow-up visit since 2015 and no significant variation across disease types Regardless of insurance coverage, 33% of Cohort A and 48% of Cohort B survivors were not seen in 2016. Follow-up status was not related to disease type or insurance status. Conclusions: Many AYAs do not continue with survivorship care. Health insurance status did not predict follow-up adherence, nor did disease type. The longer survivors are from the end of their treatment, the less likely they are to have follow-up care at a cancer center. Further research is needed to determine other implicating factors, such as age at diagnosis and type and intensity of cancer treatment received. [Table: see text]

Lost but not missing: factors associated with loss of follow-up in a paediatric cardiology clinic

2021 ◽  
pp. 1-5
Author(s):  
Lisa J. Gregorcyk ◽  
Michael Kelleman ◽  
Matthew E. Oster
Keyword(s):  
Age Groups ◽  
Time Interval ◽  
Paediatric Cardiology ◽  
Adequate Care ◽  
Modifiable Factors ◽  
Cardiology Clinic ◽  
Paediatric Practice ◽  
Race Ethnicity ◽  
Lost To Follow Up

Abstract Background: Loss of follow-up is a barrier to providing adequate care to paediatric cardiac patients. The purpose of this study was to determine variables associated with loss of appropriate paediatric cardiology follow-up, including potentially modifiable factors. We hypothesised having earlier recommend follow-up intervals was associated with less likelihood of loss of follow-up. Methods: We performed a retrospective cohort study of patients >5 years old seen in a large, outpatient paediatric practice from 2013 to 2016. Subjects were considered to be lost to follow-up if they did not have a subsequent outpatient encounter by 6 months after their recommend follow-up time interval. Results: Of the 8940 eligible patients, 45.9% were lost to follow-up. Recommended follow-up interval of 1 year was associated with less loss of follow-up (41.4%) as compared to 2-year intervals (51.6%) and 3 years (55.7%) (p < 0.001 for both). Other significant predictors of loss of follow-up included less severe heart disease, older age, and non-Hispanic Black race/ethnicity. Sex and payor type were not significant predictors. In the stratified analyses by severity of disease and age, longer recommended follow-up time was associated with greater loss of follow-up among all severity and age categories. Conclusions: Almost half of the patients in our cohort did not return to clinic within the recommended timeline. Shorter follow-up time was associated with less loss of follow-up among all categories of disease severity and age groups. Recommending shorter follow-up intervals may be one initiative for paediatric cardiologists to improve rates of follow-up.

Timeline analysis of adjuvant therapy timing in colorectal cancer to improve adherence to the 120-day quality measure.

2015 ◽  
Vol 33 (3_suppl) ◽  
pp. 729-729
Author(s):  
Omar Maen Rashid ◽  
Karen A. Coyne ◽  
Thomas W. Ross ◽  
David Shibata
Keyword(s):  
Process Improvement ◽  
Time Period ◽  
Timeline Analysis ◽  
Institutional Experience ◽  
Coding Standards ◽  
The Mean ◽  
Lost To Follow Up ◽  
Mean Time

729 Background: Multiple organizations, including ASCO, have developed accountability quality of cancer care measures that have been incorporated into accreditation, managed care contracts and quality monitoring. Institutional adherence to adjuvant chemotherapy (chemo) for stage III colon cancer (CC) provided within 120 days of diagnosis (Dx) is one such measure. We previously reported our institutional experience with reasons for non-adherence to this measure. We undertook an in-depth comparison of the clinical management timeline in adherent (A) and non-adherent (NA) cases to identify potential areas for process improvement to address this issue. Methods: All CC cases reported at a single institution from 2008–2012 were reviewed using ACS Commission on Cancer coding standards. Student t-test was used for statistical comparisons. Results: Of the 122 measure-eligible cases 16 (13.1%) were deemed NA. Of NA cases, 2(12.5%) were lost to follow up and 14(87.5%) received delayed chemo. In NA cases, the mean time from initial Dx to chemo was 159.5(+/-51) days vs. 68.7(+/-24.5) days in A cases (p=2x10-6). The Table reports the mean interval times between diagnosis, initial visit, surgery, medical oncology consultation, and receipt of chemo. The most significant differences between A and NA cases were in the pre-operative time period and related to obtaining the initial consultation and subsequent surgical treatment. Conclusions: Treatment timeline analysis revealed the most prominent delays were time to initial presentation and to surgical intervention. These areas could potentially be addressed by measure awareness, streamlining of scheduling and improved inter-provider communication. With the inevitable implementation of such measures, institutions may benefit from similar systematic evaluations for process improvement. [Table: see text]

Variation among follow-up survivorship guidelines for adolescent and young adults (AYA).

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 147-147
Author(s):  
Erin Marie Barthel ◽  
Elizabeth Kiernan ◽  
Darcy Banco ◽  
Katherine Spencer ◽  
Susan K. Parsons
Keyword(s):  
Hodgkin Lymphoma ◽  
Late Effects ◽  
Time Interval ◽  
Survivorship Care ◽  
Nccn Guidelines ◽  
Care Plans ◽  
Follow Up Care ◽  
Long Term Follow Up

147 Background: The AYA population is a growing group of survivors, exceeding more than 600,000 who are at high risk for late effects of cancer-directed therapy. While many guidelines exist for cancer survivorship care, choosing which to use for an AYA cancer survivor is challenging, yet essential, to ensure comprehensive follow-up care. Methods: Survivorship care plans, including treatment summaries and follow-up care plans, were created for three clinical vignettes (acute lymphoblastic leukemia, osteosarcoma, and Hodgkin Lymphoma). Four sets of guidelines were used including the Children’s Oncology Group Long-Term Follow-Up Guidelines (COG LTFU), National Comprehensive Cancer Network (NCCN) Guidelines for Age- Related Recommendations: AYA Oncology (NCCN-AYA), NCCN Guidelines for Treatment of Cancer by Site (NCCN-Site), and NCCN Guidelines for Supportive Care: Survivorship (NCCN-Survivor) and NCCN supplemental cancer screening guidelines. The follow-up care plans were compared across guidelines to determine the extent and nature of the similarities and differences concerning AYA survivorship care. Results: The guidelines differ widely on surveillance recommendations based on risk, test, and frequency. The COG LTFU recommends screening all individuals with a specific treatment exposure, whereas the NCCN-AYA recommends screening based on risk and the NCCN-Survivor recommends testing individuals with a positive review of systems and other health risk factors. To illustrate this, in the follow-up care plan for our Hodgkin Lymphoma case, recommended monitoring for cardiac toxicity varied from annual screening (COG LTFU) to ten year intervals (NCCN-Survivor), based on which guideline was used. Conclusions: The guidelines disagree on the link between treatment exposures and late effects, on the population to be screened, on the screening test to be used, and on the time interval of testing. This has significant implications for the long-term follow-up care an AYA survivor will receive. We highlight differences across the guidelines and offer solutions to harmonize guidelines to ensure comprehensive, quality survivorship care for this population.

scholarly journals A Smartphone Game to Prevent HIV Among Young Africans: Protocol for a Randomized Pilot Study of a Mobile Intervention (Preprint)

2018 ◽  
Author(s):  
Gaëlle Sabben ◽  
Victor Akelo ◽  
Victor Mudhune ◽  
Ken Ondeng'e ◽  
Richard Ndivo ◽  
...  
Keyword(s):  
Young People ◽  
Controlled Trial ◽  
Hiv Infections ◽  
Geographic Area ◽  
Sub Saharan Africa ◽  
Hiv Prevention Intervention ◽  
Randomized Controlled ◽  
Sub Saharan ◽  
Lost To Follow Up

BACKGROUND Young people aged under 25 years make up an increasing proportion of the population in emerging economies such as Kenya, where half of new adult HIV infections are among 15- to 24-year olds. Interventions targeting this age group have the potential to avert HIV infections among an increasingly large at-risk population. Interactive communication technologies offer a promising platform for reaching young people in engaging ways. OBJECTIVE Tumaini is a narrative-based smartphone game designed to help young Africans protect themselves from HIV. The objective of this study was to pilot test the game, focusing on the data needed to inform a future randomized controlled efficacy trial, including assessments of study feasibility and safety. METHODS The study took place in Kisumu Town, western Kenya, in spring 2017. The game-based intervention was pilot tested for 16 days with a sample of 60 preadolescents aged 11 to 14 years. Participant recruitment was initiated through schools. Participants were randomly assigned to the control or intervention arms of the study. One parent for each of the intervention arm participants was also recruited (n=30). The intervention arm participants were provided with smartphones on which Tumaini was loaded so that they could play the game at home. Youth completed behavioral surveys at baseline, posttest, and 6-week follow-up. The intervention arm participants provided quantitative feedback on their experience of the game-based intervention at posttest. They and their parents further participated in postintervention focus group discussions. Feasibility-related study metrics were collected on recruitment, enrollment, attrition, safety of participants, and return of phones. RESULTS Recruitment and enrollment of the 60 preadolescents and parents were successfully completed within 18 days. No participants were lost to follow-up: all youth completed all 3 waves of the survey and 27 intervention arm youth and 22 parents and caregivers participated in the focus groups. No safety concerns were reported. All phones were returned after the intervention period; none were damaged or lost. All intervention arm participants initiated gameplay, recording a mean exposure time just under 27 hours. CONCLUSIONS Findings indicate that it is feasible and safe to test a smartphone-based HIV prevention intervention for very young adolescents in urban and peri-urban sub-Saharan Africa by initiating recruitment in schools and temporarily providing youth participants with smartphones on which the game is loaded. A randomized controlled trial powered to assess the efficacy of the game-based intervention is being designed to be carried out in the same geographic area as the pilot, using similar methods. CLINICALTRIAL ClinicalTrials.gov NCT03054051; https://clinicaltrials.gov/ct2/show/NCT03054051 (Archived by WebCite at http://www.webcitation.org/6wjwpX8Bg.) INTERNATIONAL REGISTERED REPOR RR1-10.2196/11209

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