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1.
Psychooncology ; 33(6): e6366, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38880761

ABSTRACT

OBJECTIVE: Following a cancer diagnosis, restricted participation in daily life is common. Restricted participation can be temporary or long lasting. The aim of this study was to characterize how daily life participation is impacted following a cancer diagnosis. METHODS: Eligible individuals included adults (>18 years) with any stage/grade brain, breast, colorectal, or lung cancer in any phase of treatment or post-treatment. Participants completed a semi-structured interview about how their life participation was impacted following their cancer diagnosis. Data were analyzed through team-based thematic analysis. RESULTS: Forty adults, 10 per disease category, participated. Four themes were identified that supported or hindered daily life participation: (1) self-expectations, (2) expectations of others, (3) awareness of mortality, and (4) symptoms and side effects of cancer. Participants discussed how their cancer experience resulted in a reprioritization of what they valued doing in their life. However, many survivors struggled to adapt and described a tension between their need to adapt to their current life circumstances and their contrasting desire to stay connected with their pre-cancer selves through daily life participation. The mental health challenges associated with decreased participation were also outlined by participants. CONCLUSIONS: Cancer survivors' daily life participation is influenced by expectations from themselves and others, awareness of mortality, and disease symptoms/side effects. Future interventions can target these domains to supports survivors' life participation.


Subject(s)
Activities of Daily Living , Adaptation, Psychological , Cancer Survivors , Neoplasms , Qualitative Research , Humans , Female , Male , Middle Aged , Neoplasms/psychology , Aged , Adult , Activities of Daily Living/psychology , Cancer Survivors/psychology , Quality of Life/psychology , Aged, 80 and over , Interviews as Topic
2.
Pediatr Blood Cancer ; : e31060, 2024 May 17.
Article in English | MEDLINE | ID: mdl-38757454

ABSTRACT

BACKGROUND: Developmental delays are common among children with sickle cell disease (SCD). Existing guidelines support consistent screening to increase the identification of deficits and support referral to rehabilitative interventions, yet adherence remains variable. This study sought to assess current practices and identify barriers and facilitators to improve developmental screening for children 0-3 years with SCD. PROCEDURE: A mixed methods approach, guided by the Exploration and Preparation stages of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework, assessed developmental screening practices among primary care providers and hematologists. Phase 1 included the SCD Developmental Surveillance and Screening Guideline and Practice Survey. Phase 2 included the SCD Developmental Screening Organizational Survey alongside semi-structured interviews. Descriptive and qualitative methods summarized the findings. RESULTS: Thirty-three providers from general pediatrics and hematology completed phase 1. Use of standardized developmental screening measures was variable, with the most frequently used being the Modified Checklist for Autism in Toddlers (77%) and the Ages and Stages Questionnaire (55%). Fifteen providers participated in phase 2, and reported they were most likely to engage in changes to improve their practice (mean = 4.4/5) and least likely to support spiritual health and well-being (mean = 3.5/5). Three themes emerged:(i) developmental screening is not standardized or specific to SCD, (ii) children with SCD benefit from a multidisciplinary team, and (iii) healthcare system limitations are a barrier. CONCLUSIONS: Developmental screening is inconsistent and insufficient for young children with SCD. Providers are interested in supporting children with SCD, but report a lack of standardized measures and consistent guidance as barriers.

3.
J Bone Joint Surg Am ; 105(8): 600-606, 2023 04 19.
Article in English | MEDLINE | ID: mdl-36795855

ABSTRACT

BACKGROUND: After a radial nerve injury, patients must weigh a complicated set of advantages and disadvantages to observation or surgery. We conducted semistructured interviews to characterize the decision-making process that these patients undertake. METHODS: We recruited participants who were treated with expectant management (nonoperatively), received only a tendon transfer, or received a nerve transfer. Participants completed a semistructured interview that was transcribed and coded to identify recurring themes, to describe the influence of qualitative findings on treatment decision-making. RESULTS: We interviewed 15 participants (5 expectant management, 5 tendon transfer only, and 5 nerve transfer). Participants' primary concerns were returning to work, hand appearance, regaining motion, resuming activities of daily living, and enjoying hobbies. Delayed diagnosis and/or insurance coverage led 3 participants to change treatment from nerve transfer to isolated tendon transfer. Interactions with providers early in diagnosis and treatment had strong effects on how members of the care team were perceived. The hand therapist was the primary person who shaped expectations, provided encouragement, and prompted referral to the treating surgeon. Participants valued debate among the care team members regarding treatment, provided that medical terminology was explained. CONCLUSIONS: This study highlights the importance of initial, collaborative care in setting expectations for patients with radial nerve injuries. Many participants named returning to work and hand appearance as primary concerns. Hand therapists were the primary source of support and information during recovery. LEVEL OF EVIDENCE: Therapeutic Level IV . See Instructions for Authors for a complete description of levels of evidence.


Subject(s)
Nerve Transfer , Radial Nerve , Humans , Radial Nerve/surgery , Activities of Daily Living , Tendon Transfer , Watchful Waiting , Goals , Motivation
4.
Arch Rehabil Res Clin Transl ; 4(3): 100212, 2022 Sep.
Article in English | MEDLINE | ID: mdl-36123981

ABSTRACT

Objective: To characterize how survivors of cancer define participation. Design: Cross-sectional qualitative study. Setting: Participants were enrolled from a large academic medical center in the Midwestern United States. Interviews were conducted over Zoom or phone. Participants: Survivors of cancer (N=40) with brain, breast, colorectal, or lung cancer (n=10 per group). Participants were purposively sampled to maximize variation in the study sample. Participant ages ranged from 26-83 years, with a mean age of 55 years. Seventy percent of participants were receiving active cancer treatment at the time of the interview. Interventions: Not applicable. Main Outcome Measures: Participant perspectives gathered from 1-on-1 semistructured interviews. Qualitative description and thematic analysis were used to analyze interview transcripts and develop themes from the data. Results: Survivors described participation as doing valued activities and highlighted 4 common aspects: (1) control; (2) social connection; (3) engaging in various contexts; and (4) cultivation of joy and purpose. Fully participating in life involved being able to do what they want to do without restrictions or limitations. Survivors' perspectives of control outlined how competence, choice, adaptations, and locus of control influence broader feelings of control and participation. Interviews highlighted that participation remains central to daily life among survivors of cancer. Conclusions: Rehabilitation researchers and clinicians need to establish a standard and comprehensive definition of participation. Rehabilitation providers need to consistently evaluate how participation is affected among survivors of cancer and use measures that include core aspects of participation identified in this study and previous research. Comprehensively defining participation will improve the design and selection of measurement tools and support comprehensive assessment of survivor experiences.

5.
JAMIA Open ; 4(3): ooab062, 2021 Jul.
Article in English | MEDLINE | ID: mdl-34820600

ABSTRACT

The objective of this study was to directly compare the ability of commonly used early warning scores (EWS) for early identification and prediction of sepsis in the general ward setting. For general ward patients at a large, academic medical center between early-2012 and mid-2018, common EWS and patient acuity scoring systems were calculated from electronic health records (EHR) data for patients that both met and did not meet Sepsis-3 criteria. For identification of sepsis at index time, National Early Warning Score 2 (NEWS 2) had the highest performance (area under the receiver operating characteristic curve: 0.803 [95% confidence interval [CI]: 0.795-0.811], area under the precision recall curves: 0.130 [95% CI: 0.121-0.140]) followed NEWS, Modified Early Warning Score, and quick Sequential Organ Failure Assessment (qSOFA). Using validated thresholds, NEWS 2 also had the highest recall (0.758 [95% CI: 0.736-0.778]) but qSOFA had the highest specificity (0.950 [95% CI: 0.948-0.952]), positive predictive value (0.184 [95% CI: 0.169-0.198]), and F1 score (0.236 [95% CI: 0.220-0.253]). While NEWS 2 outperformed all other compared EWS and patient acuity scores, due to the low prevalence of sepsis, all scoring systems were prone to false positives (low positive predictive value without drastic sacrifices in sensitivity), thus leaving room for more computationally advanced approaches.

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