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1.
J Autism Dev Disord ; 2024 Jan 26.
Article in English | MEDLINE | ID: mdl-38277075

ABSTRACT

The quality of care in public schools and other community settings for school-aged youths on the autism spectrum is variable and often not evidence-based. Training practitioners in these settings to deliver evidence-based practices (EBPs) may improve the quality of care. We developed a free internet-based training and clinical guidance system synthesizing multiple EBPs for youth on the autism spectrum addressing a range of mental health needs and autism-related behaviors, entitled Modular EBPs for Youth on the Autism Spectrum (MEYA; meya.ucla.edu). A multiple baseline study was conducted with seven practitioners recruited from mental health practice settings across the United States who were providing services to children on the autism spectrum (aged 6 to 17 years). Practitioners were randomly assigned to undergo baseline conditions of 2 to 8 weeks. Once online training in MEYA commenced, practitioners engaged in algorithm-guided self-instruction in EBPs for autism. Participants video-recorded sessions. Independent coders used the MEYA Fidelity Scale (MEYA-FS) to rate adherence and competence in EBPs for autism. Practitioners also completed measures pertaining to implementation outcomes and parents rated youth outcomes on personalized target behaviors. Five of seven practitioners increased their adherence to MEYA practices (i.e., MEYA-FS scores) following MEYA training. Findings for competence were similar, though somewhat less robust. Practitioners generally viewed MEYA as feasible, understandable, and acceptable. Most youth outcomes improved during MEYA. A randomized, controlled trial of MEYA would be helpful in characterizing its effectiveness for supporting practitioner EBP implementation and youth outcomes in school and community service settings.

2.
Disabil Rehabil ; : 1-10, 2023 Aug 06.
Article in English | MEDLINE | ID: mdl-37545161

ABSTRACT

PURPOSE: Stroke survivors often live with significant treatment burden yet our ability to examine this is limited by a lack of validated measurement instruments. We aimed to adapt the 60-item, 12-domain Patient Experience with Treatment and Self-Management (PETS) (version 2.0, English) patient-reported measure to create a stroke-specific measure (PETS-stroke) and to conduct content validity testing with stroke survivors. MATERIALS AND METHODS: Step 1 - Adaptation of PETS to create PETS-stroke: a conceptual model of treatment burden in stroke was utilised to amend, remove or add items. Step 2 - Content validation: Fifteen stroke survivors in Scotland were recruited through stroke groups and primary care. Three rounds of five cognitive interviews were audio recorded and transcribed. Framework analysis was used to explore importance/relevance/clarity of PETS-stroke content. COSMIN reporting guidelines were followed. RESULTS: The adapted PETS-stroke had 34 items, spanning 13 domains; 10 items unchanged from PETS, 6 new and 18 amended. Interviews (n = 15) resulted in further changes to 19 items, including: instructions; wording; item location; answer options; and recall period. CONCLUSIONS: PETS-stroke has content that is relevant, meaningful and comprehensible to stroke survivors. Content validity and reliability testing are now required. The validated tool will aid testing of tailored interventions to lessen treatment burden.IMPLICATIONS FOR REHABILITATIONTreatment burden is reported by stroke survivors but no stroke-specific measure of treatment burden exists.We adapted an existing measure of treatment burden for use in multimorbid patients (PETS) to create a stroke specific version (PETS-stroke).The items in PETS-stroke are relevant and meaningful to people with stroke.Further testing will examine construct validity, reliability, and useability.This measure will be useful in future RCTs to measure treatment burden and to identify stroke patients who are at high risk of treatment burden.

3.
Child Neurol Open ; 10: 2329048X231184183, 2023.
Article in English | MEDLINE | ID: mdl-37475835

ABSTRACT

Primary carnitine deficiency (PCD) is caused by pathogenic variants of the SLC22A5 gene, which encodes a transmembrane protein that functions as a high affinity carnitine transporter. Carnitine is essential for the transport of acyl-CoA, produced from fatty acids, into the mitochondria where they are oxidised to produce energy. We present the case history of an 8-year-old boy who presented with fever, lethargy, focal rhythmic (3 Hz) left wrist twitching, and severe encephalopathy. MRI brain showed basal ganglia involvement. Metabolic investigations revealed low serum carnitine; whole genome sequencing confirmed compound heterozygous SLC22A5 mutations. With carnitine replacement, intensive care support, and neurorehabilitation, he made a remarkable recovery, regaining independent breathing, speech, mobility, and hand use. Seizure presentation in PCD is rare and presentation with sustained focal myoclonus has not been previously reported. This case expands the known phenotype of PCD. Prompt carnitine replacement is imperative.

4.
Ann Fam Med ; (21 Suppl 1)2023 01 01.
Article in English | MEDLINE | ID: mdl-36972534

ABSTRACT

Context: Treatment burden is defined as the workload of healthcare for people with long-term conditions and the impact on wellbeing. Stroke survivors often live with considerable treatment burden because of high healthcare workload alongside deficiencies in care provision that can make navigating healthcare systems and managing health more difficult. Ways of measuring treatment burden after stroke are currently lacking. The Patient Experience with Treatment and Self-Management measure (PETS) is a 60-item patient-reported measure that was developed to measure treatment burden in a multi-morbid population. Although comprehensive, this is not a stroke-specific measure and therefore omits some burdens associated with stroke rehabilitation. Objective: Our aim was to adapt (PETS) (version 2.0, English), a patient-reported measure of treatment burden in multimorbidity, to create a stroke-specific measure (PETS-stroke), and to conduct content validity testing in a UK stroke survivor population. Study Design and analysis: PETS items were adapted to create PETS-stroke, using a previously developed conceptual model of treatment burden in stroke. Content validation involved three rounds of qualitative cognitive interviews with stroke survivors in Scotland recruited through stroke groups and primary care. Participants were asked for feedback on the importance, relevance and clarity of content of PETS-stroke. Framework analysis was used to explore responses. Setting: Community. Population studied: Stroke survivors. Instrument: Patient Experience with Treatment and Self-Management in stroke (PETS-stroke) scale. Results: Interviews (n=15) resulted in changes to the wording of instructions and items; location of items within the measure; answer options; and recall period. The final PETS-stroke tool has 34-items, spanning 13 domains. It includes 10 items unchanged from PETS, 6 new and 18 amended. Conclusions: The development of a systematic method of quantifying treatment burden from the perspective of stroke survivors will allow for the identification of patients at high risk of treatment burden and will aid the design and testing of tailored interventions aimed at lessening treatment burden.


Subject(s)
Stroke , Humans , Surveys and Questionnaires , Stroke/therapy , Stroke/complications , Stroke/psychology , Survivors/psychology , Scotland , Patient Reported Outcome Measures
5.
Eur J Pain ; 27(5): 568-579, 2023 05.
Article in English | MEDLINE | ID: mdl-36680381

ABSTRACT

BACKGROUND: selfBACK provides individually tailored self-management support for low back pain (LBP) via an artificial intelligence-based smartphone app. We explore whether those with depressive/stress symptoms can benefit from this technology. METHODS: Secondary analysis of the selfBACK randomized controlled trial (n = 461). Participants with LBP were randomized to usual care (n = 229), or usual care plus selfBACK (n = 232). PRIMARY OUTCOME: LBP-related disability (Roland-Morris Disability Questionnaire, RMDQ) over 9 months. SECONDARY OUTCOMES: global perceived effect (GPE)/pain self-efficacy (PSEQ)/satisfaction/app engagement. Baseline depressive symptoms were measured using the patient health questionnaire (PHQ-8) and stress with the perceived stress scale (PSS). Outcomes stratified by baseline PHQ-8/PSS scores to assess associations across the whole cohort, and intervention versus control groups. RESULTS: Participants with higher levels of depressive/stress symptoms reported more baseline LBP-related disability (RMDQ 3.1; 1.6 points higher in most vs least depressed/stressed groups respectively); lower self-efficacy (PSEQ 8.1; 4.6 points lower in most vs least depressive/stressed groups respectively). LBP-related disability improved over time; relative risk of improvement in those with greatest depressive/stress symptoms versus nil symptom comparators at 9 months: 0.8 (95% CI: 0.6 to 1.0) and 0.8 (95% CI: 0.7 to 1.0) respectively. No evidence that different baseline levels of depressive/perceived stress symptoms are associated with different RMDQ/GPE/PSEQ outcomes. Whilst participants with higher PHQ-8/PSS were less likely to be satisfied or engage with the app, there was no consistent association among PHQ-8/PSS level, the intervention and outcomes. CONCLUSIONS: The selfBACK app can improve outcomes even in those with high levels of depressive/stress symptoms and could be recommended for patients with LBP. SIGNIFICANCE: We have demonstrated that an app supporting the self-management of LBP is helpful, even in those with higher levels of baseline depression and stress symptoms. selfBACK offers an opportunity to support people with LBP and provides clinicians with an additional tool for their patients, even those with depression or high levels of stress. This highlights the potential for digital health interventions for chronic pain.


Subject(s)
Chronic Pain , Low Back Pain , Mobile Applications , Humans , Low Back Pain/diagnosis , Low Back Pain/therapy , Depression/therapy , Artificial Intelligence , Treatment Outcome
6.
Health Open Res ; 5: 17, 2023.
Article in English | MEDLINE | ID: mdl-38708032

ABSTRACT

Background: Treatment burden is the workload of healthcare for people with long-term conditions and the impact on wellbeing. A validated measure of treatment burden after stroke is needed. We aim to adapt a patient-reported measure (PRM) of treatment burden in multimorbidity, PETS (Patient Experience with Treatment and Self-Management version 2.0), to create a stroke-specific measure, PETS-stroke. We aim to examine content validity, construct validity, reliability and feasibility in a stroke survivor population. Methods: 1) Adaptation of 60-item PETS to PETS-stroke using a taxonomy of treatment burden. 2) Content validity testing through cognitive interviews that will explore the importance, relevance and clarity of each item. 3) Evaluation of scale psychometric properties through analysis of data from stroke survivors recruited via postal survey (n=340). Factor structure will be tested with confirmatory factor analysis and Cronbach's alpha will be used to index internal consistency. Construct validity will be tested against: The Stroke Southampton Self-Management Questionnaire; The Satisfaction with Stroke Care Measure; and The Shortened Stroke Impact Scale. We will explore known-groups validity by exploring the association between treatment burden, socioeconomic deprivation and multimorbidity. Test-retest reliability will be examined via re-administration after 2 weeks. Acceptability and feasibility of use will be explored via missing data rates and telephone interviews with 30 participants. Conclusions: We aim to create a validated PRM of treatment burden after stroke. PETS-stroke is designed for use as an outcome measure in clinical trials of stroke treatments and complex interventions to ascertain if treatments are workable for patients in the context of their everyday lives.

7.
Chiropr Man Therap ; 30(1): 41, 2022 10 03.
Article in English | MEDLINE | ID: mdl-36192724

ABSTRACT

BACKGROUND: Low back pain (LBP) is one of the most common reasons for disability globally. Digital interventions are a promising means of supporting people to self-manage LBP, but implementation of digital interventions has been suboptimal. An artificial intelligence-driven app, selfBACK, was developed to support self-management of LBP as an adjunct to usual care. To better understand the process of implementation from a participant perspective, we qualitatively explored factors influencing embedding, integrating, and sustaining engagement with the selfBACK app, and the self-perceived effects, acceptability, and satisfaction with the selfBACK app. METHODS: Using a qualitative interview study and an analytic framework approach underpinned by Normalization Process Theory (NPT), we investigated the experiences of patients who participated in the selfBACK randomized controlled trial (RCT). Interviews focused on the motivation to participate in the RCT, experiences of using the selfBACK app, and views about future intended use and potential of using digital health interventions for self-management of LBP. Participants were purposively sampled to represent diversity in age, sex, and implementation reflected by a proxy measure of number of app-generated self-management plans during the first three months of RCT participation. RESULTS: Twenty-six participants aged 21-78, eleven females and fifteen men, with two to fourteen self-management plans, were interviewed between August 2019 and April 2020. A broad range of factors influencing implementation of selfBACK within all constructs of NPT were identified. Key facilitating factors were preferences and beliefs favoring self-management, a friendly, motivational, and reassuring supporter, tailoring and personalization, convenience and ease of use, trustworthiness, perceiving benefits, and tracking achievements. Key impeding factors were preferences and beliefs not favoring self-management, functionality issues, suboptimal tailoring and personalization, insufficient time or conflicting life circumstances, not perceiving benefits, and insufficient involvement of health care practitioners. Self-perceived effects on pain and health, behavior/attitude, and gaining useful knowledge varied by participant. CONCLUSIONS: The high prevalence of LBP globally coupled with the advantages of providing help through an app offers opportunities to help countless people. A range of factors should be considered to facilitate implementation of self-management of LBP or similar pain conditions using digital health tools.


Subject(s)
Low Back Pain , Mobile Applications , Self-Management , Female , Humans , Infant , Low Back Pain/therapy , Male , Qualitative Research
8.
BMC Pediatr ; 22(1): 491, 2022 08 19.
Article in English | MEDLINE | ID: mdl-35986306

ABSTRACT

BACKGROUND: Children's exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents' capacity for insight into their child's and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACHTM) program has been implemented and tested in seven rapid-cycling pilot studies (n = 64) and found to significantly improve parents' RF in the domains of attachment, parenting quality, immune function, and children's cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACHTM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. METHODS: The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACHTM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire - 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACHTM implementation. DISCUSSION: The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACHTM in community agencies. TRIAL REGISTRATION: Name of registry: https://clinicaltrials.gov/. REGISTRATION NUMBER: NCT04853888 . Date of registration: April 22, 2021.


Subject(s)
Child Health , Parenting , Child Rearing , Child, Preschool , Humans , Infant , Infant, Newborn , Parent-Child Relations , Parenting/psychology , Parents/psychology
9.
BMC Med ; 20(1): 53, 2022 02 08.
Article in English | MEDLINE | ID: mdl-35130898

ABSTRACT

BACKGROUND: SELFBACK, an artificial intelligence (AI)-based app delivering evidence-based tailored self-management support to people with low back pain (LBP), has been shown to reduce LBP-related disability when added to usual care. LBP commonly co-occurs with multimorbidity (≥ 2 long-term conditions) or pain at other musculoskeletal sites, so this study explores if these factors modify the effect of the SELFBACK app or influence outcome trajectories over time. METHODS: Secondary analysis of a randomized controlled trial with 9-month follow-up. Primary outcome is as follows: LBP-related disability (Roland Morris Disability Questionnaire, RMDQ). Secondary outcomes are as follows: stress/depression/illness perception/self-efficacy/general health/quality of life/physical activity/global perceived effect. We used linear mixed models for continuous outcomes and logistic generalized estimating equation for binary outcomes. Analyses were stratified to assess effect modification, whereas control (n = 229) and intervention (n = 232) groups were pooled in analyses of outcome trajectories. RESULTS: Baseline multimorbidity and co-occurring musculoskeletal pain sites did not modify the effect of the SELFBACK app. The effect was somewhat stronger in people with multimorbidity than among those with LBP only (difference in RMDQ due to interaction, - 0.9[95 % CI - 2.5 to 0.6]). Participants with a greater number of long-term conditions and more co-occurring musculoskeletal pain had higher levels of baseline disability (RMDQ 11.3 for ≥ 2 long-term conditions vs 9.5 for LBP only; 11.3 for ≥ 4 musculoskeletal pain sites vs 10.2 for ≤ 1 additional musculoskeletal pain site); along with higher baseline scores for stress/depression/illness perception and poorer pain self-efficacy/general health ratings. In the pooled sample, LBP-related disability improved slightly less over time for people with ≥ 2 long-term conditions additional to LBP compared to no multimorbidity and for those with ≥4 co-occurring musculoskeletal pain sites compared to ≤ 1 additional musculoskeletal pain site (difference in mean change at 9 months = 1.5 and 2.2, respectively). All groups reported little improvement in secondary outcomes over time. CONCLUSIONS: Multimorbidity or co-occurring musculoskeletal pain does not modify the effect of the selfBACK app on LBP-related disability or other secondary outcomes. Although people with these health problems have worse scores both at baseline and 9 months, the AI-based selfBACK app appears to be helpful for those with multimorbidity or co-occurring musculoskeletal pain. TRIAL REGISTRATION: NCT03798288 . Date of registration: 9 January 2019.


Subject(s)
Low Back Pain , Mobile Applications , Musculoskeletal Pain , Artificial Intelligence , Humans , Low Back Pain/epidemiology , Multimorbidity , Musculoskeletal Pain/epidemiology , Pain Measurement , Quality of Life , Treatment Outcome
10.
Psychol Assess ; 34(1): 43-57, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34460285

ABSTRACT

Few measures of autism-related symptoms have been established as both psychometrically robust and sensitive to the effects of treatment. In the present study, a personalized measure of autism-related symptoms using the Youth Top Problems (YTP) method (Weisz et al., 2011) was evaluated. Participants included 68 children with diagnoses of autism (ages 6-13 years), and their parents, who were randomized to cognitive behavioral therapy (CBT) or enhanced standard community treatment (ESCT) addressing autism-related symptoms. At pretreatment, parents described their child's top autism-related problems (YTPs) in their own words and rated the severity of these problems on a Likert-type scale. Parents also made daily severity ratings on the child's top three YTPs for 5 days prior to treatment and 5 days following treatment while videorecording their child's behavior at home on each of these days. Trained observers coded these videorecordings, focusing on the same YTPs that the parents rated. Parents also completed standardized checklists of autism-related symptoms and general mental health symptoms. There was evidence of convergent and discriminant validity as well as good test-retest reliability for the YTP measures. YTP severity scores converged with the standardized measure of autism-related symptoms. Parent-reported YTP scores predicted observers' YTP scores at the daily level, and both parent-reported and observers' YTP scores decreased from pre- to post treatment. Observers' ratings of the videorecordings exhibited sensitivity to treatment condition. These applications of the YTP method are promising and may complement standardized symptom checklists for clinical trials focusing on autism-related symptoms. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Cognitive Behavioral Therapy , Adolescent , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Autistic Disorder/diagnosis , Autistic Disorder/therapy , Child , Humans , Parents , Reproducibility of Results , Symptom Assessment
11.
Child Psychiatry Hum Dev ; 53(2): 223-236, 2022 04.
Article in English | MEDLINE | ID: mdl-33462740

ABSTRACT

Children with autism spectrum disorder (ASD) are at elevated risk of suicidal ideation, particularly those with comorbid anxiety disorders and/or obsessive-compulsive disorder (OCD). We investigated the risk factors associated with suicidal ideation in 166 children with ASD and comorbid anxiety disorders/OCD, and the unique contribution of externalizing behaviors. Suicidal ideation was reported in the child sample by 13% of parents. Controlling for child age, sex, and IQ, perceived loneliness positively predicted the likelihood of suicidal ideation. In addition, externalizing behaviors positively predicted suicidal ideation, controlling for all other factors. Reliance on parental report to detect suicidal ideation in youth with ASD is a limitation of this study. Nonetheless, these findings highlight the importance of assessing and addressing suicidal ideation in children with ASD and comorbid anxiety disorders/OCD, and more importantly in those with elevated externalizing behaviors and perceptions of loneliness.


Subject(s)
Autism Spectrum Disorder , Obsessive-Compulsive Disorder , Adolescent , Anxiety , Anxiety Disorders/complications , Autism Spectrum Disorder/complications , Child , Humans , Obsessive-Compulsive Disorder/diagnosis , Suicidal Ideation
12.
Front Pharmacol ; 12: 608208, 2021.
Article in English | MEDLINE | ID: mdl-34867311

ABSTRACT

Background: Anticholinergic burden (ACB), is defined as the cumulative effect of anticholinergic medication which are widely prescribed to older adults despite increasing ACB being associated with adverse effects such as: falls, dementia and increased mortality. This research explores the views of health care professionals (HCPs) and patients on a planned trial to reduce ACB by stopping or switching anticholinergic medications. The objectives were to explore the views of key stakeholders (patients, the public, and HCPs) regarding the potential acceptability, design and conduct of an ACB reduction trial. Materials and Methods: We conducted qualitative interviews and focus groups with 25 HCPs involved in prescribing medication with anticholinergic properties and with 22 members of the public and patients who were prescribed with the medication. Topic guides for the interviews and focus groups explored aspects of feasibility including: 1) views of a trial of de-prescribing/medication switching; 2) how to best communicate information about such a trial; 3) views on who would be best placed and preferred to undertake such medication changes, e.g., pharmacists or General Practitioners (GPs)? 4) perceived barriers and facilitators to trial participation and the smooth conduct of such a trial; 5) HCP views on the future implementability of this approach to reducing ACB and 6) patients' willingness to be contacted for participation in a future trial. Qualitative data analysis was underpinned by Normalization Process Theory. Results: The public, patients and HCPs were supportive of an ACB reduction trial. There was consensus among the different groups that key points to consider with such a trial included: 1) ensuring patient engagement throughout to enable concerns/potential pitfalls to be addressed from the beginning; 2) ensuring clear communication to minimise potential misconceptions about the reasons for ACB reduction; and 3) provision of access to a point of contact for patients throughout the life of a trial to address concerns; The HCPs in particular suggested two more key points: 4) minimise the workload implications of any trial; and 5) pharmacists may be best placed to carry out ACB reviews, though overall responsibility for patient medication should remain with GPs. Conclusion: Patients, the public and HCPs are supportive of trials to reduce ACB. Good communication and patient engagement during design and delivery of a trial are essential as well as safety netting and minimising workload.

13.
JAMA Intern Med ; 181(10): 1288-1296, 2021 10 01.
Article in English | MEDLINE | ID: mdl-34338710

ABSTRACT

Importance: Lower back pain (LBP) is a prevalent and challenging condition in primary care. The effectiveness of an individually tailored self-management support tool delivered via a smartphone app has not been rigorously tested. Objective: To investigate the effectiveness of selfBACK, an evidence-based, individually tailored self-management support system delivered through an app as an adjunct to usual care for adults with LBP-related disability. Design, Setting, and Participants: This randomized clinical trial with an intention-to-treat data analysis enrolled eligible individuals who sought care for LBP in a primary care or an outpatient spine clinic in Denmark and Norway from March 8 to December 14, 2019. Participants were 18 years or older, had nonspecific LBP, scored 6 points or higher on the Roland-Morris Disability Questionnaire (RMDQ), and had a smartphone and access to email. Interventions: The selfBACK app provided weekly recommendations for physical activity, strength and flexibility exercises, and daily educational messages. Self-management recommendations were tailored to participant characteristics and symptoms. Usual care included advice or treatment offered to participants by their clinician. Main Outcomes and Measures: Primary outcome was the mean difference in RMDQ scores between the intervention group and control group at 3 months. Secondary outcomes included average and worst LBP intensity levels in the preceding week as measured on the numerical rating scale, ability to cope as assessed with the Pain Self-Efficacy Questionnaire, fear-avoidance belief as assessed by the Fear-Avoidance Beliefs Questionnaire, cognitive and emotional representations of illness as assessed by the Brief Illness Perception Questionnaire, health-related quality of life as assessed by the EuroQol-5 Dimension questionnaire, physical activity level as assessed by the Saltin-Grimby Physical Activity Level Scale, and overall improvement as assessed by the Global Perceived Effect scale. Outcomes were measured at baseline, 6 weeks, 3 months, 6 months, and 9 months. Results: A total of 461 participants were included in the analysis; the population had a mean [SD] age of 47.5 [14.7] years and included 255 women (55%). Of these participants, 232 were randomized to the intervention group and 229 to the control group. By the 3-month follow-up, 399 participants (87%) had completed the trial. The adjusted mean difference in RMDQ score between the 2 groups at 3 months was 0.79 (95% CI, 0.06-1.51; P = .03), favoring the selfBACK intervention. The percentage of participants who reported a score improvement of at least 4 points on the RMDQ was 52% in the intervention group vs 39% in the control group (adjusted odds ratio, 1.76; 95% CI, 1.15-2.70; P = .01). Conclusions and Relevance: Among adults who sought care for LBP in a primary care or an outpatient spine clinic, those who used the selfBACK system as an adjunct to usual care had reduced pain-related disability at 3 months. The improvement in pain-related disability was small and of uncertain clinical significance. Process evaluation may provide insights into refining the selfBACK app to increase its effectiveness. Trial Registration: ClinicalTrials.gov Identifier: NCT03798288.


Subject(s)
Low Back Pain , Mobile Applications , Pain Management , Pain Measurement/methods , Quality of Life , Self-Management , Adaptation, Psychological , Disability Evaluation , Exercise , Female , Humans , Low Back Pain/diagnosis , Low Back Pain/psychology , Low Back Pain/therapy , Male , Middle Aged , Outcome Assessment, Health Care , Pain Management/methods , Pain Management/psychology , Primary Health Care/methods , Self-Management/methods , Self-Management/psychology , Surveys and Questionnaires
14.
J Consult Clin Psychol ; 89(2): 110-125, 2021 Feb.
Article in English | MEDLINE | ID: mdl-33705167

ABSTRACT

OBJECTIVE: To date, no one-on-one psychotherapy protocol for elementary and middle school-aged children with autism spectrum disorder (ASD) has been found to be efficacious for treating autism-related symptoms such as failure to initiate social interactions. This study compared modular cognitive behavioral therapy (CBT) with enhanced standard community treatment (ESCT) in terms of impact on the severity of autism-related symptoms. METHOD: Children with ASD (N = 107; aged 6-13 years) were randomly assigned to a treatment condition (CBT or ESCT). Both treatments provided 32 therapy sessions. The CBT condition utilized a modular design, matching specific evidence-based treatment elements to each child's clinical needs (e.g., social-communication symptoms). The ESCT condition provided social skills training and cognitive behavioral training in a structured and linear group therapy format. The primary outcome measure was independent evaluator ratings of peer engagement during school recess using a structured and validated observation system. Parents also made session-by-session ratings on personalized autism-related symptom profiles throughout treatment. RESULTS: CBT outperformed ESCT on the primary outcome measure (p < .001; d = .50; 95% CI [.06, .93]) and the secondary outcome measure (p = .003; d = .87; 95% CI [.45, 1.27]). CONCLUSIONS: The modular one-on-one CBT program evaluated in this study may be beneficial for reducing the severity of autism-related symptoms in some children with ASD. Further research is needed to clarify the extent of the treatment effect and the feasibility of implementation for therapists in the community. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Autism Spectrum Disorder/therapy , Cognitive Behavioral Therapy/methods , Adolescent , Autism Spectrum Disorder/psychology , Child , Female , Humans , Male , Parents , Schools , Treatment Outcome
15.
J Autism Dev Disord ; 51(11): 4239-4247, 2021 Nov.
Article in English | MEDLINE | ID: mdl-33385281

ABSTRACT

This commentary describes the transition to remote delivery of cognitive-behavioral therapy (CBT) for anxiety in children with autism spectrum disorder (ASD) who participates in a clinical trial during the COVID-19 pandemic. The effects of COVID-19 on children's anxiety and on the family functioning are discussed. Modifications to CBT necessitated by telehealth delivery were aimed at maximizing engagement of children and their parents while maintaining treatment fidelity and adhering to the research protocol. Treatment targets were updated to address new sources of anxiety and CBT exposure exercises were modified to accommodate the new reality of quarantine restrictions. If the COVID-19 pandemic continues to affect treatment delivery it may require a widespread utilization of telehealth for treating anxiety in children with ASD.


Subject(s)
Autism Spectrum Disorder , COVID-19 , Cognitive Behavioral Therapy , Anxiety/epidemiology , Anxiety/therapy , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , Child , Humans , Pandemics , SARS-CoV-2 , Telemedicine , Treatment Outcome
16.
J Interpers Violence ; 36(5-6): NP2697-NP2724, 2021 03.
Article in English | MEDLINE | ID: mdl-29642769

ABSTRACT

Research on the effects of intimate partner violence (IPV) on women demonstrates the significant physical, emotional, psychological, and spiritual consequences of this form of interpersonal trauma. It is well documented that experiencing IPV can have devastating consequences to women's physical and mental health, overall well-being, and quality of life, as well as that of their children's. However, a small, predominantly qualitative body of research exists on women's experience of and capacity for healing from the effects of IPV, but more research is needed to advance theory and practice in this important area. This study applied secondary analysis to an existing data set to answer the question, "What are the themes of healing and posttraumatic growth in ten diverse women's narratives of IPV?" Lengthy, detailed interview transcripts were rigorously subjected to inductive and deductive thematic analysis, which revealed three overarching themes, and six subthemes, of healing and posttraumatic growth in women's narratives: Awareness and Insight (subthemes: Discerning the Self and Understanding Relationships), Renewal and Reconstruction (subthemes: [Re]building the Self and Redefining Relationships), and Transformation and Meaning (subthemes: New Perspectives and Finding Purpose Through Helping Others). Findings further revealed that women's healing from the effects of IPV involves a multidimensional, personalized, nonlinear, and often transformative process that operates within themselves and through relationships. Practitioners working with women who have experienced IPV should consider survivors' potential for healing and target appropriate intervention strategies. Additional qualitative and longitudinal research with diverse populations would deepen understanding of the dynamics, variables, and circumstances that impact healing and posttraumatic growth for women exposed to IPV.


Subject(s)
Intimate Partner Violence , Posttraumatic Growth, Psychological , Child , Female , Humans , Mental Health , Quality of Life , Survivors
17.
Child Psychiatry Hum Dev ; 52(6): 1143-1153, 2021 12.
Article in English | MEDLINE | ID: mdl-33159632

ABSTRACT

An observational coding system was developed to track clinical change in children with autism spectrum disorder (ASD) during psychotherapy. The Pediatric Autism Spectrum Therapy Observation System (PASTOS) consists of 23 items divided into 5 subscales and is used to rate child behaviors in individual psychotherapy sessions. Manual-based cognitive behavioral therapy session transcripts of 22 children diagnosed with ASD (IQ > 70) and a concurrent anxiety disorder (M = 9.41 years, SD = 1.56 years) enrolled in a randomized, controlled trial were coded. Results suggested that the PASTOS exhibited promising interrater reliability, internal consistency, convergent validity at post-treatment, and treatment sensitivity. The PASTOS may be a useful tool for studying process and outcome in psychotherapy research on children with ASD.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Anxiety Disorders , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Child , Humans , Psychometrics , Reproducibility of Results
18.
BMJ Open ; 10(12): e038800, 2020 12 12.
Article in English | MEDLINE | ID: mdl-33310794

ABSTRACT

OBJECTIVES: Low back pain (LBP) is a leading contributor to disability globally. Self-management is a core component of LBP management. We aimed to synthesise published qualitative literature concerning digital health interventions (DHIs) to support LBP self-management to: (1) determine engagement strategies, (2) identify barriers and facilitators affecting patient uptake/utilisation and (3) develop a preliminary conceptual model of barriers and facilitators to uptake/utilisation. DESIGN: Systematic review following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. DATA SOURCES: MEDLINE, Embase, CINAHL, PsycINFO, Cochrane Library, DoPHER, TRoPHI, Web of Science and OT Seeker, from January 2000 to December 2018, using the concepts: LBP, DHI and self-management. ELIGIBILITY CRITERIA: Peer-reviewed qualitative study (or component) examining engagement with, or barriers and/or facilitators to the uptake/utilisation of an interactive DHI for self-management of LBP in adults (community, primary or secondary care settings). DATA EXTRACTION AND SYNTHESIS: Standardised data extraction form was completed. COREQ (Consolidated criteria for Reporting Qualitative research) checklist was used to assess methodology. Data was synthesised narratively for engagement strategies, thematically for barriers/facilitators to uptake/utilisation and normalisation process theory was applied to produce a conceptual model. RESULTS: We identified 14 191 citations, of which 105 full-text articles were screened, and five full-text articles from four studies included. These were from community and primary care contexts in Europe and the USA, and involved 56 adults with LBP and 19 healthcare professionals. There was a lack of consideration on how to sustain engagement with DHIs. Examination of barriers and facilitators for uptake/utilisation identified four major themes: IT (information technology) usability-accessibility; quality-quantity of content; tailoring-personalisation; and motivation-support. These themes informed the development of a preliminary conceptual model for uptake/utilisation of a DHI for LBP self-management. CONCLUSIONS: We highlight key barriers and facilitators that should be considered when designing DHIs for LBP self-management. Our findings are in keeping with reviews of DHIs for other long-term conditions, implying these findings may not be condition specific. SYSTEMATIC REVIEW REGISTRATION: A protocol for this systematic review was registered with https://www.crd.york.ac.uk/PROSPERO/ (CRD42016051182) on 10 November 2016. https://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42016051182.


Subject(s)
Low Back Pain , Self-Management , Telemedicine , Adult , Europe , Humans , Low Back Pain/therapy , Qualitative Research
19.
JMIR Res Protoc ; 9(10): e20308, 2020 Oct 29.
Article in English | MEDLINE | ID: mdl-33118959

ABSTRACT

BACKGROUND: Implementation and process evaluation is vital for understanding how interventions function in different settings, including if and why interventions have different effects or do not work at all. OBJECTIVE: This paper presents the protocol for an implementation and process evaluation embedded in a multicenter randomized controlled trial conducted in Denmark and Norway (the selfBACK project). selfBACK is a data-driven decision support system that provides participants with weekly self-management plans for low back pain. These plans are delivered through a smartphone app and tailored to individual participants by using case-based reasoning methodology. In the trial, we compare selfBACK in addition to usual care with usual care alone. METHODS: The aim of this study is to conduct a convergent mixed-methods implementation and process evaluation of the selfBACK app by following the reach, effectiveness, adoption, implementation, and maintenance framework. We will evaluate the process of implementing selfBACK and investigate how participants use the intervention in daily life. The evaluation will also cover the reach of the intervention, health care provider willingness to adopt it, and participant satisfaction with the intervention. We will gather quantitative measures by questionnaires and measures of data analytics on app use and perform a qualitative exploration of the implementation using semistructured interviews theoretically informed by normalization process theory. Data collection will be conducted between March 2019 and October 2020. RESULTS: The trial opened for recruitment in February 2019. This mixed-methods implementation and evaluation study is embedded in the randomized controlled trial and will be collecting data from March 2019 to October 2020; dissemination of trial results is planned thereafter. The results from the process evaluation are expected 2021-2022. CONCLUSIONS: This study will provide a detailed understanding of how self-management of low back pain can be improved and how a digital health intervention can be used as an add-on to usual care to support patients to self-manage their low back pain. We will provide knowledge that can be used to explore the possibilities of extending the generic components of the selfBACK system and key drivers that could be of use in other conditions and diseases where self-management is an essential prevention or treatment strategy. TRIAL REGISTRATION: ClinicalTrials.gov NCT03798288; https://www.clinicaltrials.gov/ct2/show/NCT03798288. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/20308.

20.
Article in English | MEDLINE | ID: mdl-32489674

ABSTRACT

BACKGROUND: Very few of the publicly available apps directed towards self-management of low back pain (LBP) have been rigorously tested and their theoretical underpinnings seldom described. The selfBACK app was developed in collaboration with end-users and clinicians and its content is supported by best evidence on self-management of LBP. The objectives of this pilot study were to investigate the basis for recruitment and screening procedures for the subsequent randomized controlled trial (RCT), to test the inclusion process in relation to questionnaires and app installation, and finally to investigate the change in primary outcome over time. METHODS: This single-armed pilot study enrolled 51 participants who had sought help for LBP of any duration from primary care (physiotherapy, chiropractic, or general practice) within the past 8 weeks. Participants were screened for eligibility using the PROMIS-Physical-Function-4a questionnaire. Participants were asked to use the selfBACK app for 6 weeks. The app provided weekly tailored self-management plans targeting physical activity, strength and flexibility exercises, and education. The construction of the self-management plans was achieved using case-based reasoning (CBR) methodology to capture and reuse information from previous successful cases. Participants completed the primary outcome pain-related disability (Roland-Morris Disability Questionnaire [RMDQ]) at baseline and 6-week follow-up along with a range of secondary outcomes. Metrics of app use were collected throughout the intervention period. RESULTS: Follow-up data at 6 weeks was obtained for 43 participants. The recruitment procedures were feasible, and the number needed to screen was acceptable (i.e., 1.6:1). The screening questionnaire was altered during the pilot study. The inclusion process, answering questionnaires and app installation, were feasible. The primary outcome (RMDQ) improved from 8.6 (SD 5.1) at baseline to 5.9 (SD 4.0) at 6-week follow-up (change score 1.8, 95% CI 0.7 to 2.9). Participants spent on average 134 min (range 0-889 min) using the app during the 6-week period. CONCLUSION: The recruitment, screening, and inclusion procedures were feasible for the subsequent RCT with a small adjustment. The improvement on the RMDQ from baseline to follow-up was small. Time pattern of app usage varied considerably between the participants. TRIAL REGISTRATION: NCT03697759. Registered on August 10, 2018. https://clinicaltrials.gov/ct2/show/NCT03697759.

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