LIVIVO - Search results -

Search results

Result 1 - 10 of total 62

Search options

Article ; Online: Understanding chronic pain in Neurofibromatosis Type 1 using the Neurofibromatosis Pain Module (NFPM).

Buono, Frank D / Larkin, Kaitlyn / Zempsky, William T / Grau, Lauretta E / Martin, Staci

American journal of medical genetics. Part A

2024

Abstract: Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic disorder that can cause an individual significant chronic pain (CP). CP affects quality of life and daily functioning, yet there are limited effective treatments for CP within NF1. The ... ...

Abstract	Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic disorder that can cause an individual significant chronic pain (CP). CP affects quality of life and daily functioning, yet there are limited effective treatments for CP within NF1. The current study describes the impact of CP using the Neurofibromatosis Pain Module (NFPM). The NFPM is a self-reported clinical assessment that evaluates the impact of CP across multiple domains (e.g., interference, severity, tolerance, and symptomology) and three prioritized pain regions. A cross-sectional study (N = 242) asked adults with NF1 to describe and rate their pain using the NFPM. The results indicated that they reported moderate pain severity (M = 6.6, SD = 2.0) on a 0-10 scale, that 54% (n = 131) had been in pain at least 24 days in the last 30, for 75% (n = 181) sleep was affected, and 16% reported that nothing was effective in reducing their CP for their primary pain region. The current results extend previously published work on CP within adults with NF1 and indicate that more emphasis on understanding and ameliorating CP is required. The NFPM is a sensitive clinical measure that provides qualitative and quantitative responses to inform medical providers about changes in CP.
Language	English
Publishing date	2024-01-17
Publishing country	United States
Document type	Journal Article
ZDB-ID	2108614-X
ISSN	1552-4833 ; 0148-7299 ; 1552-4825
ISSN (online)	1552-4833
ISSN	0148-7299 ; 1552-4825
DOI	10.1002/ajmg.a.63541
Database	MEDical Literature Analysis and Retrieval System OnLINE

In stock of ZB MED Cologne/Königswinter

Zs.A 1376/A: Show issues

Location:
Je nach Verfügbarkeit (siehe Angabe bei Bestand)
bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
Jg. 1995 - 2021: Lesesall (1.OG)
ab Jg. 2022: Lesesaal (EG)

Order via subito

This service is chargeable due to the Delivery terms set by subito. Orders including an article and supplementary material will be classified as separate orders. In these cases, fees will be demanded for each order.

Details ▾
- See ZB MED holdings
- Order with fees

Article ; Online: "It's starting to weigh on me": Exploring the Experiences and Support Needs of Harm Reduction Staff in Connecticut using the Social-Ecological Model.

Hill, Katherine / Dunham, Katherine / Grau, Lauretta E / Heimer, Robert

Harm reduction journal

2023 Volume 20, Issue 1, Page(s) 168

Abstract: Background: The experiences and perceived support needs of harm reduction workers in the USA have been understudied. While previous research has explored staff burnout and role-related stress, there is a research gap around potential supports for staff ... ...

Abstract	Background: The experiences and perceived support needs of harm reduction workers in the USA have been understudied. While previous research has explored staff burnout and role-related stress, there is a research gap around potential supports for staff wellbeing and individual longevity in their roles. This is especially critical given the growing overdose crisis and the need for sustainable harm reduction programming. Thus, we sought to describe the experiences of harm reduction staff and identify the perceived support that could empower harm reduction staff to successfully navigate their roles. Methods: Purposive sampling methods were used to recruit harm reduction staff working in Connecticut. Seventeen semi-structured, one-on-one interviews were conducted between December 2022 and March 2023. Participants were asked about their experiences with role-related stressors and supports. Informed by the Social-Ecological Model, transcripts were coded using both inductive and deductive codes, and themes were developed using thematic analysis approaches. Results: Study participants described their experiences working in harm reduction and the numerous ways they already are or could be receiving support in their roles. These experiences were organized into eight themes according to the levels of the Social-Ecological Model. At the individual level, participants explained that support could help them navigate the variability of the physical environment, boundary setting, and self-care. Relationships between clients and co-workers were both identified as means of support at the interpersonal level, helping participants navigate difficult situations and feelings of stress. At the organizational level, study participants explained how they look to their organization to provide sufficient support by way of training, staffing, compensation, and benefits. Additionally, participants stressed the importance of having supervisors who valued their work and provided emotional support. Lastly, at the community level, participants discussed how support was needed to help them navigate complex systems while working with a stigmatized population in an often-stigmatized field. Conclusions: To best support harm reduction staff in their day-to-day roles, our findings underscore the need for support on multiple levels. Future research could explore how the provision of support to harm reduction staff impacts not only staff perceptions of support but also the success of clients accessing harm reduction services.
MeSH term(s)	Humans ; Connecticut ; Harm Reduction ; Qualitative Research
Language	English
Publishing date	2023-11-14
Publishing country	England
Document type	Journal Article
ZDB-ID	2146691-9
ISSN	1477-7517 ; 1477-7517
ISSN (online)	1477-7517
ISSN	1477-7517
DOI	10.1186/s12954-023-00898-4
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

Article ; Online: Geographic and temporal trends in fentanyl-detected deaths in Connecticut, 2009-2019.

Lu, Haidong / Crawford, Forrest W / Gonsalves, Gregg S / Grau, Lauretta E

Annals of epidemiology

2023 Volume 79, Page(s) 32–38

Abstract: Purpose: Since 2012 fentanyl-detected fatal overdoses have risen from 4% of all fatal overdoses in Connecticut to 82% in 2019. We aimed to investigate the geographic and temporal trends in fentanyl-detected deaths in Connecticut during 2009-2019.: ... ...

Abstract	Purpose: Since 2012 fentanyl-detected fatal overdoses have risen from 4% of all fatal overdoses in Connecticut to 82% in 2019. We aimed to investigate the geographic and temporal trends in fentanyl-detected deaths in Connecticut during 2009-2019. Methods: Data on the dates and locations of accidental/undetermined opioid-detected fatalities were obtained from Connecticut Office of the Chief Medical Examiner. Using a Bayesian space-time binomial model, we estimated spatiotemporal trends in the proportion of fentanyl-detected deaths. Results: During 2009-2019, a total of 6,632 opioid deaths were identified. Among these, 3234 (49%) were fentanyl-detected. The modeled spatial patterns suggested that opioid deaths in northeastern Connecticut had higher probability of being fentanyl-detected, while New Haven and its neighboring towns and the southwestern region of Connecticut, primarily Greenwich, had a lower risk. Model estimates also suggested fentanyl-detected deaths gradually overtook the preceding non-fentanyl opioid-detected deaths across Connecticut. The estimated temporal trend showed the probability of fentanyl involvement increased substantially since 2014. Conclusions: Our findings suggest that geographic variation exists in the probability of fentanyl-detected deaths, and areas at heightened risk are identified. Further studies are warranted to explore potential factors contributing to the geographic heterogeneity and continuing dispersion of fentanyl-detected deaths in Connecticut.
MeSH term(s)	Humans ; Fentanyl ; Analgesics, Opioid ; Connecticut/epidemiology ; Bayes Theorem ; Drug Overdose
Chemical Substances	Fentanyl (UF599785JZ) ; Analgesics, Opioid
Language	English
Publishing date	2023-01-18
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	1074355-8
ISSN	1873-2585 ; 1047-2797
ISSN (online)	1873-2585
ISSN	1047-2797
DOI	10.1016/j.annepidem.2023.01.009
Database	MEDical Literature Analysis and Retrieval System OnLINE

In stock of ZB MED Cologne/Königswinter

Zs.A 3225: Show issues

Location:
Je nach Verfügbarkeit (siehe Angabe bei Bestand)
bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
Jg. 1995 - 2021: Lesesall (2.OG)
ab Jg. 2022: Lesesaal (EG)

Order via subito

Details ▾
- See ZB MED holdings
- Order with fees

Article: Incidence of Hepatitis C Virus and Other Bloodborne Virus Infections Among Nonurban Residents of Fairfield and New Haven Counties, Connecticut Who Inject Drugs.

Batman, Samantha H / Grau, Lauretta E / Heimer, Robert

Connecticut medicine

2020 Volume 82, Issue 3, Page(s) 133–137

Abstract: Opioid overdose and substance abuse treatment entry data suggest that injection drug use is increasing in nonurban locations. We sought to explore the prevalence and incidence of viral infections among people who inject drugs (PWID) residing in Fairfield ...

Abstract	Opioid overdose and substance abuse treatment entry data suggest that injection drug use is increasing in nonurban locations. We sought to explore the prevalence and incidence of viral infections among people who inject drugs (PWID) residing in Fairfield and New Haven counties but outside of the six largest cities. A longitudinal cohort of PWID was assembled and incidence of HIV-1, hepatitis B virus, and hepatitis C virus infections was determined by annual antibody screening. Data on participants' socioeconomic situation and risk behaviors were collected. We identified 11 new hepatitis C virus infections and calculated incidence at 9.03 cases per 100 person-years. Only one new HIV infection and one new hepatitis B virus infection were detected. Factors associated with seroconversion were assessed. Given the high incidence of HCV and lack of HBV vaccination coverage, prevention and treatment resources need to be targeted to this population.
Language	English
Publishing date	2020-10-02
Publishing country	United States
Document type	Journal Article
ZDB-ID	412600-2
ISSN	0010-6178
ISSN	0010-6178
Database	MEDical Literature Analysis and Retrieval System OnLINE

In stock of ZB MED Cologne/Königswinter

Zs.B 288: Show issues

Location:
Je nach Verfügbarkeit (siehe Angabe bei Bestand)
bis Jg. 2021: Bestellungen von Artikeln über das Online-Bestellformular
ab Jg. 2022: Lesesaal (EG)

Order via subito

Details ▾
- See ZB MED holdings
- Order with fees

Article ; Online: Exploring stakeholders perspectives on TB contact investigation in Cali, Colombia: a qualitative study.

Palomares Velosa, Jairo E / Figueroa Gómez, Jorge E / Rojas Zúñiga, Claudia N / Díaz, Gustavo / Ferro, Beatriz E / Davis, J Lucian / Grau, Lauretta E

Frontiers in public health

2023 Volume 11, Page(s) 1204862

Abstract: Introduction: Contact investigation is a proven intervention for tuberculosis (TB) case finding and prevention. Although widely endorsed by national public health authorities and the World Health Organization, many countries struggle to implement it ... ...

Abstract	Introduction: Contact investigation is a proven intervention for tuberculosis (TB) case finding and prevention. Although widely endorsed by national public health authorities and the World Health Organization, many countries struggle to implement it effectively. The objective of the study is to describe and characterize the barriers and facilitators of TB contact investigation in Cali, Colombia from the perspective and experience of the key stakeholders involved. Methods: We collected data from group discussions during two workshop sessions with clinic and public health staff involved in TB contact investigation (June 2019 and March 2020 respectively) and semi-structured interviews with TB cases and their household contacts (July 2019 to April 2020). We undertook an inductive thematic analysis with the RADaR technique to characterize the barriers and facilitators of the TB contact investigation process. Results: The two workshops included 21 clinics and 12 public health staff. We also conducted 26 semi-structured interviews with TB cases and their household contacts. Using thematic analysis, we identified four common themes: Healthcare Operations, Essential Knowledge, Time Limitations and Competing Responsibilities, and Interpersonal Interactions. The main barriers to conducting household visits were low data quality, stigma and mistrust, safety concerns for health workers, and limited resources. The main barriers to TB uptake by contacts were competing responsibilities, low TB risk perceptions among contacts, and difficulty accessing diagnostic tests for contacts. In contrast, good communication and social skills among health workers and accurate TB knowledge facilitated successful household visits and TB test uptake, according to key stakeholders. Conclusion: This study provides a deeper understanding of TB contact investigation barriers and facilitators in a high-prevalence urban setting in a middle-income country from the perspective and experience of key stakeholders. The study shed light on the barriers that hinder household contacts engagement and TB test uptake such as issues of systemic capacity and TB knowledge. Also, highlighted facilitators such as the importance of interpersonal communication skills among health workers in the public and private sector. The insights from this study can serve as a valuable resource for public health organizations seeking to enhance their contact investigation efforts and improve TB control in similar settings.
MeSH term(s)	Humans ; Contact Tracing ; Colombia ; Tuberculosis/diagnosis ; Tuberculosis/prevention & control ; Tuberculosis/epidemiology ; Qualitative Research ; Ambulatory Care Facilities
Language	English
Publishing date	2023-07-25
Publishing country	Switzerland
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2711781-9
ISSN	2296-2565 ; 2296-2565
ISSN (online)	2296-2565
ISSN	2296-2565
DOI	10.3389/fpubh.2023.1204862
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

Article ; Online: Technical violations and infractions are drivers of disengagement from methadone treatment among people with opioid use disorder discharged from Connecticut jails 2014-2018.

Marotta, Phillip / Hass, Alissa / Viera, Adam / Doernberg, Molly / Barbour, Russell / Grau, Lauretta E / Heimer, Robert

Substance abuse treatment, prevention, and policy

2023 Volume 18, Issue 1, Page(s) 43

Abstract: Background: We investigated the interaction between arrests for technical violations vs. receiving new charges with receiving community-based methadone treatment on time-to reincarceration (TTR) in a cohort of men with opioid use disorder (OUD) released ...

Abstract	Background: We investigated the interaction between arrests for technical violations vs. receiving new charges with receiving community-based methadone treatment on time-to reincarceration (TTR) in a cohort of men with opioid use disorder (OUD) released from custody from two Connecticut jails from 2014 to 2018. Methods: Hazard ratios (HR) were estimated for time to reincarceration for technical violations/infractions, misdemeanors only, felonies only, and both misdemeanors and felonies after adjusting for age, race/ethnicity, and receiving methadone treatment during incarceration or in the community following release. Moderation analyses tested the hypotheses that the benefits of receiving methadone in jail or the community on TTR were significantly different for people with only technical violations and infractions compared to misdemeanor and felony charges. Results: In the sample of 788 men who were reincarcerated, 29.4% received technical violations with no new charges (n = 232) with the remainder of the sample receiving new charges consisting of 26.9% new misdemeanor charges, 6.5% felony charges, and 37.2% both felony and misdemeanor charges. Compared to men who received new misdemeanor charges, TTR was significantly shorter among those who received technical violations and infractions with no new charges amounting to a 50% increase in TTR (334.5 days, SD = 321.3 vs. 228.1 days, SD = 308.0, p < 0.001; aHR = 1.5, 95% CI = 1.3, 1.8, p < 0.001). TTR of men who resumed methadone and were charged with a new crime was 50% longer than those who resumed methadone and received technical violations/infractions with no new charges. (230.2 days, SD = 340.2 vs. 402.3 days, SD = 231.3; aHR = 1.5, 95%CI = 1.0, 2.2, p = 0.038). Conclusions: Reducing technical violations may enhance the benefits of providing community-based methadone following release from incarceration on extending the time between incarcerations during the vulnerable time post-incarceration and reduce the burden on correctional systems.
MeSH term(s)	Humans ; Male ; Analgesics, Opioid/therapeutic use ; Connecticut ; Jails ; Methadone/therapeutic use ; Opiate Substitution Treatment ; Opioid-Related Disorders/drug therapy ; Prisoners
Chemical Substances	Analgesics, Opioid ; Methadone (UC6VBE7V1Z)
Language	English
Publishing date	2023-07-07
Publishing country	England
Document type	Journal Article
ZDB-ID	2222956-5
ISSN	1747-597X ; 1747-597X
ISSN (online)	1747-597X
ISSN	1747-597X
DOI	10.1186/s13011-023-00541-2
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

Article ; Online: Accessibility of Opioid Treatment Programs Based on Conventional vs Perceived Travel Time Measures.

Kim, Junghwan / Lee, Jinhyung / Thornhill, Thomas A / Dennett, Julia / Lu, Haidong / Howell, Benjamin / Grau, Lauretta E / Fiellin, David A / Heimer, Robert / Gonsalves, Gregg

JAMA network open

2024 Volume 7, Issue 2, Page(s) e240209

Abstract: Importance: Transportation barriers have long been associated with poorer health outcomes; this burden is especially acute for individuals with opioid use disorder (OUD), a chronic disease often associated with low socioeconomic status. Conventional ... ...

Abstract	Importance: Transportation barriers have long been associated with poorer health outcomes; this burden is especially acute for individuals with opioid use disorder (OUD), a chronic disease often associated with low socioeconomic status. Conventional travel time analyses may not fully account for experiential components of travel, thereby understating the true travel burden and overstating treatment accessibility to opioid treatment programs (OTPs). Objective: To develop a metric of feels-like accessibility for those using public transit to access OTPs that accounts for the realistic travel burden on individuals with OUD. Design, setting, and participants: This cross-sectional study integrated high-resolution transit schedules and operating hours of OTPs to measure feels-like accessibility. Feels-like accessibility considers the differential outcomes of out-of-vehicle travel components and more realistically reflects individuals' transportation burden than conventional accessibility measures. Gini indices and spatial regression models were used to investigate inequities in accessibility. Geocoded data for residential addresses of 1018 overdose fatalities in Connecticut in 2019 were used as a proxy for the treatment needs of individuals with OUD. Data were analyzed between May and August 2023. Main outcomes and measures: Conventional and feels-like accessibility scores. Exposures: Fluctuations in public transit frequencies over the course of the day and the limited operating hours of the OTPs. Results: Of the 1018 individuals in the study, the mean (SD) age at death was 43.7 (12.6) years, 784 individuals (77%) were men, 111 (11%) were African American, and 889 (87%) were White, with other racial and ethnic categories including 18 individuals (2%). A total of 264 individuals in the sample (26%) could not access an OTP within 180 minutes. For those who could access these facilities, the average 1-way travel time was 45.6 minutes, with individuals spending approximately 70% of their trip duration on out-of-vehicle travel components. The conventional accessibility metric underestimates individuals' travel burden to OTPs as well as the inequity in accessibility compared with the feels-like accessibility metric. For example, the median (range) conventional accessibility score, defined as the number of OTPs within 120 minutes of transit travel time, was 5.0 (0.0-17.0); the median (range) feels-like accessibility score, defined as the number of OTPs within 120 minutes of transit travel time weighted to account for in- and out-of-vehicle segments, was 1.0 (0.0-10.0). There is a considerable temporal variation in travel time and accessibility depending on the departure times. Conclusions and relevance: In this cross-sectional study of travel burdens, the calculated feels-like accessibility scores, which consider the differential outcomes of out-of-vehicle travel components (eg, walking and waiting), could better and more realistically reflect passengers' transportation burden. Policy recommendations derived from the conventional accessibility metric could be misleading, and decision-makers should use feels-like accessibility metrics that adequately capture individuals' travel burdens. In the context of access to OTPs, the findings from this study suggest that opening new OTP sites to address gaps in access due to distance to services or extending hours of operation at existing sites may ameliorate the travel burden for individuals.
MeSH term(s)	Male ; Humans ; Female ; Analgesics, Opioid/therapeutic use ; Cross-Sectional Studies ; Travel ; Transportation ; Opioid-Related Disorders/epidemiology
Chemical Substances	Analgesics, Opioid
Language	English
Publishing date	2024-02-05
Publishing country	United States
Document type	Journal Article
ISSN	2574-3805
ISSN (online)	2574-3805
DOI	10.1001/jamanetworkopen.2024.0209
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

Inter-library loan at ZB MED

Your chosen title can be delivered directly to ZB MED Cologne location if you are registered as a user at ZB MED Cologne.

Article ; Online: Qualitative study of perspectives concerning recent rehospitalisations among a high-risk cohort of veteran patients in Connecticut, USA.

Antony, Sheila M / Grau, Lauretta E / Brienza, Rebecca S

BMJ open

2018 Volume 8, Issue 6, Page(s) e018200

Abstract: Objectives: Veterans Affairs (VA) patients are at risk for rehospitalisation due to their lower socioeconomic status, older age, poor social support or multiple comorbidities. The study explored inpatients' perceptions about factors contributing to ... ...

Abstract	Objectives: Veterans Affairs (VA) patients are at risk for rehospitalisation due to their lower socioeconomic status, older age, poor social support or multiple comorbidities. The study explored inpatients' perceptions about factors contributing to their rehospitalisation and their recommendations to reduce this risk. Design: Thematic qualitative data analysis of interviews with 18 VA inpatients. Setting: VA Connecticut Healthcare System, West Haven Hospital medical inpatient units. Participants: All were aged 18+ years, rehospitalised within 30 days of most recent discharge, medically stable and competent to provide consent. Measurements: Interviews assessed inpatients' health status after last discharge, reason for rehospitalisation, access to and support from primary care providers (PCP), medication management, home support systems and history of substance use or mental health disorders. Results: The mean age was 71.6 years (11.1 SD); all were Caucasian, living on limited budgets, and many had serious medical conditions or histories of mental health disorders. Participants considered structural barriers to accessing PCP and limited PCP involvement in medical decision-making as contributing to their rehospitalisation, although most believed that rehospitalisation had been inevitable. Peridischarge themes included beliefs about premature discharge, inadequate understanding of postdischarge plans and insufficiently coordinated postdischarge services. Most highly valued their VA healthcare but recommended increasing PCPs' involvement and reducing structural barriers to accessing primary and specialty care. Conclusions: Increased PCP involvement in medical decision-making about rehospitalisation, expanded clinic hours, reduced travel distances, improved communications to patients and their families about predischarge and postdischarge plans and proactive postdischarge outreach to high-risk patients may reduce rehospitalisation risk.
MeSH term(s)	Aged ; Aged, 80 and over ; Connecticut ; Delivery of Health Care, Integrated/standards ; Female ; Hospitals, Veterans/standards ; Humans ; Interviews as Topic ; Male ; Middle Aged ; Patient Discharge/standards ; Patient Readmission ; Patient Satisfaction ; Primary Health Care/methods ; Qualitative Research ; Risk Factors ; United States ; United States Department of Veterans Affairs ; Veterans/psychology
Language	English
Publishing date	2018-06-30
Publishing country	England
Document type	Journal Article ; Research Support, U.S. Gov't, Non-P.H.S.
ZDB-ID	2747269-3
ISSN	2044-6055 ; 2044-6055 ; 2053-3624
ISSN (online)	2044-6055
ISSN	2044-6055 ; 2053-3624
DOI	10.1136/bmjopen-2017-018200
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

Article ; Online: Development and pilot-testing of a hepatitis C reinfection prevention intervention for patients in treatment for hepatitis C infection.

Viera, Adam / Grau, Lauretta E / Fisher, Jeffrey D / Farnum, Scott O / Tetrault, Jeanette M / Scott, Greg / Heimer, Robert

Drug and alcohol dependence reports

2022 Volume 3, Page(s) 100038

Abstract: We developed a two-session behavioral intervention to prevent HCV reinfection.•The intervention was piloted at an OTP and integrated into HCV treatment.•Baseline data showed limited knowledge & application of safer injection practices.•Implementation ... ...

Abstract	•We developed a two-session behavioral intervention to prevent HCV reinfection.•The intervention was piloted at an OTP and integrated into HCV treatment.•Baseline data showed limited knowledge & application of safer injection practices.•Implementation barriers included logistics and the lack of financial incentive.•Adaptations addressed barriers, yielding a more feasible and acceptable intervention.
Language	English
Publishing date	2022-03-11
Publishing country	Netherlands
Document type	Journal Article
ISSN	2772-7246
ISSN (online)	2772-7246
DOI	10.1016/j.dadr.2022.100038
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

Inter-library loan at ZB MED

Your chosen title can be delivered directly to ZB MED Cologne location if you are registered as a user at ZB MED Cologne.

Article ; Online: Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts.

Grau, Lauretta E / Larkin, Kaitlyn / Lalloo, Chitra / Stinson, Jennifer N / Zempsky, William T / Ball, Samuel A / Buono, Frank D

BMJ open

2022 Volume 12, Issue 7, Page(s) e056692

Abstract: Objective: Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health ... ...

Abstract	Objective: Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1. Design: We conducted a series of online, audio-recorded focus groups that were then thematically analysed. Setting: Online focus groups with adults currently residing in the USA. Participants: Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups). Results: Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another's experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals. Conclusions: Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users' specific needs.
MeSH term(s)	Adult ; Chronic Pain/etiology ; Chronic Pain/therapy ; Focus Groups ; Humans ; Mobile Applications ; Neurofibromatosis 1/complications ; Neurofibromatosis 1/therapy ; Pain Management ; Self-Management/methods
Language	English
Publishing date	2022-07-15
Publishing country	England
Document type	Journal Article ; Research Support, U.S. Gov't, Non-P.H.S.
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2021-056692
Database	MEDical Literature Analysis and Retrieval System OnLINE

Order via subito

To top

More links

Kategorien

In stock of ZB MED Cologne/Königswinter

Order via subito

More links

Kategorien

Order via subito

More links

Kategorien

In stock of ZB MED Cologne/Königswinter

Order via subito

More links

Kategorien

In stock of ZB MED Cologne/Königswinter

Order via subito

More links

Kategorien

Order via subito

More links

Kategorien

Order via subito

More links

Kategorien

Order via subito

Inter-library loan at ZB MED

More links

Kategorien

Order via subito

More links

Kategorien

Order via subito

Inter-library loan at ZB MED

More links

Kategorien

Order via subito