Development and usability test of ‘PROMIS Assessment’: a smartphone WeChat mini-program for children and adolescents with cancer (Preprint)

2021 ◽  
Author(s):  
Wen Zhang ◽  
Jennifer Stinson ◽  
Danyu Li ◽  
Qingmei Huang ◽  
Yueshi Huang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Pediatric Patients ◽  
Qualitative Interviews ◽  
Usability Test ◽  
Usability Tests ◽  
Patient Reported ◽  
Intensity Functions

BACKGROUND The main goal for the healthcare of children and adolescents with cancer is to cure and better manage the distress caused by the multiple symptoms that may manifest during chemotherapy. Patient-reported outcomes (PROs) are considered to be the best way to obtain a subjective measure of symptoms. As such, it is crucial to select appropriate pediatric PROs tools, taking advantage of technologies to develop a suitable platform, and assess and manage symptoms over long-term cancer treatment. OBJECTIVE This study aimed to develop and test a smartphone application's usability, known as the WeChat mini-program. It enables children and adolescents with cancer aged 5 to 17 years old and their parent proxies to assess pediatric patients' quality of life-related symptoms using Pediatric Patient-reported Outcome Measurement Information System (PROMIS) profile-25. METHODS A focus group interview among researchers, clinical professionals, and software engineers, as well as personal qualitative interviews with pediatric patients and proxies, were conducted to form the development proposal. The iterative method was used to develop and assure the quality of the mini-program. The usability test was performed based on the standards of ISO 9241-11 among target users. Effectiveness and efficiency were based on usability tasks, satisfaction was measured with the Post-Study System Usability Questionnaire (PSSUQ), and additional qualitative interviews were conducted following all tests. Further modifications and tests would be performed to improve the mini-program based on feedback. RESULTS The WeChat mini-program 'PROMIS Assessment' included demographic and clinical information and the profile-25 questionnaire (which assesses and collects data on depressive symptoms, anxiety, fatigue, physical activity-mobility, peer relationships, pain interference, and pain intensity). Functions such as voice assistance, a reward system, data visualization, and reminders were added to improve accessibility and compliance. A total of 16 target users participated in the first round of usability tests. The completion rate of the three tasks ranged from 80.0% (for the proxy task of 'search and open') to 100.0%, and most users could complete tasks quickly. Satisfaction scores of the four dimensions of PSSUQ ranged from 6.2 to 6.8 (out of 7.0). In qualitative interviews, most participants thought the mini-program was convenient, easy to use, and helpful. Disadvantages were mainly problems with searching, expressions, and interaction with reality. The revised mini-program gained positive feedback during the second round of usability tests. CONCLUSIONS The 'PROMIS Assessment' and its administration website were developed and proved to have good usability. It can be used both inside and outside hospitals by children and adolescents with cancer and their proxies during treatment to assess their quality of life and offer significant patient-reported data to assist clinical decisions.

Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease

2006 ◽  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Childhood Cancer ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Sickle Cell ◽  
Cell Disease ◽  
Life Issues ◽  
Art Research

Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals Quality of Life and Symptom Burden 1 Month After Concussion in Children and Adolescents

2018 ◽  
Vol 58 (1) ◽  
pp. 42-49 ◽  
Author(s):  
David R. Howell ◽  
Julie C. Wilson ◽  
Michael W. Kirkwood ◽  
Joseph A. Grubenhoff
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Children And Adolescents ◽  
Symptom Burden ◽  
Psychosocial Health ◽  
Post Injury ◽  
Persistent Symptoms ◽  
Patient Reported ◽  
A Prospective Study

We conducted a prospective study of children and adolescents (n = 176; mean age = 13.0 ±2.7 years; 38% female) assessed acutely post-concussion and again 30 days later. We investigated the association between symptom burden and quality of life (QOL) outcomes, as well as the effect of age on QOL. We assessed QOL using patient-reported Pediatric Quality of Life Inventory 4.0, and symptoms using the Health and Behavior Inventory (HBI). Acute (<2 days post-injury) HBI ratings demonstrated a low correlation ( R2 = 0.08) with physical health QOL and a moderate correlation with psychosocial health QOL ( R2 = 0.21) 30 days post-concussion. HBI ratings 30 days post-concussion demonstrated a moderately high correlation with physical health QOL ( R2 = 0.35) and psychosocial health QOL ( R2 = 0.57). Age was not significantly associated with physical or psychosocial QOL ratings. Impairments in QOL following concussion may identify children and adolescents who need additional referral to address persistent symptoms at this time.

scholarly journals Health-related Quality of Life in Patients With Recurrent Pericarditis: Results From a Phase 2 Study of Rilonacept

2021 ◽  
Author(s):  
David Lin ◽  
Allan Klein ◽  
David Cella ◽  
Anna Beutler ◽  
Fang Fang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Phase 2 ◽  
Health Related Quality ◽  
Recurrent Pericarditis ◽  
Phase 2 Trial ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract Background: Impact of recurrent pericarditis (RP) on patient health-related quality of life (HRQoL) was evaluated through qualitative patient interviews and as an exploratory endpoint in a Phase 2 trial evaluating the efficacy and safety of rilonacept (IL-1α/IL-1β blocker) to treat RP.Methods: Qualitative interviews were conducted with ten adults with RP to understand symptoms and HRQoL impacts, and the 10-item Patient-Reported Outcomes Measurement Information System Global Health (PROMIS Global) v1.2 was evaluated to determine questionnaire coverage of patient experience. The Phase 2 trial enrolled participants with active symptomatic RP (A-RP, n=16) and corticosteroid-dependent participants with no active recurrence at baseline (CSD-RP, n=9). All participants received rilonacept weekly for 6 weeks during a base treatment period (TP) plus an optional 18-week extension period (EP). Concomitant medications, including corticosteroids (CS), were tapered, if possible, during EP. HRQoL was assessed using the PROMIS Global, and patient-reported pain and blood levels of c-reactive protein (CRP) were also collected at Baseline and follow-up periods. Results: Information from qualitative interviews demonstrated that PROMIS GH concepts are relevant to adults with RP. From the Phase 2 trial, both participant groups showed impacted HRQoL at Baseline [mean PROMIS Global Physical Health (GPH) and Global Mental Health (GMH), were lower than population norm average]. In A-RP, GPH/MPH improved by end of base TP and were sustained through EP (similar trends were observed for pain and CRP). Similarly, in CSD-RP, GPH/MPH improved by end of TP and further improved at EP, during CS tapering or discontinuation, without disease recurrence (low pain scores and CRP levels continued during the TP and EP). Conclusion: This is the first study demonstrating impaired HRQoL in RP. Rilonacept treatment was associated with HRQoL improvements using PROMIS GH scores. Maintained/improved HRQoL during tapering/withdrawal of CS without recurrence suggests that rilonacept may provide an alternative to corticosteroids. Trial Registration: ClinicalTrials.Gov; NCT03980522; 5 June 2019, retrospectively registered; https://clinicaltrials.gov/ct2/show/NCT03980522

scholarly journals What Are Our Patients Really Telling Us? Psychological Constructs Associated With Patient-Reported Outcomes After Anterior Cruciate Ligament Reconstruction

2020 ◽  
Vol 55 (7) ◽  
pp. 707-716
Author(s):  
Julie P. Burland ◽  
Jennifer S. Howard ◽  
Adam S. Lepley ◽  
Lindsay J. DiStefano ◽  
Laura Frechette ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Ligament Reconstruction ◽  
Cruciate Ligament ◽  
Qualitative Interviews ◽  
Cruciate Ligament Reconstruction ◽  
Perceived Disability ◽  
Patient Reported ◽  
Anterior Cruciate

Context Depressed patient-reported outcomes (PROs) are directly related to suboptimal recovery after anterior cruciate ligament reconstruction (ACLR). Various PROs commonly used after ACLR can provide a gross estimation of function but do not fully elucidate the causes of self-perceived disability. Objective To more fully characterize the factors driving responses on PROs. Design Cross-sectional study. A mixed-methods approach was used, in which qualitative interviews were conducted alongside administration of PROs to uncover the themes behind a participant's PRO responses. Setting Laboratory. Patients or Other Participants Twenty-one individuals with unilateral ACLR (age = 20.90 ± 2.86 years, height = 172.0 ± 11.03 cm; mass = 71.52 ± 13.59 kg, postsurgery = 3.66 ± 3.03 years). Main Outcome Measure(s) Patient-reported outcome measures were administered and qualitative interviews were conducted. The PROs consisted of the International Knee Documentation Committee form, Knee Injury and Osteoarthritis Outcomes Score (KOOS), ACL-Return to Sport after Injury (ACL-RSI) scale, and Tampa Scale of Kinesiophobia (TSK). A hierarchical cluster analysis was used to identify subgroups based on PRO responses. Qualitative interviews provided supplemental insight into perceived disability. Independent t tests examined cluster differences for themes. Spearman ρ correlations indicated associations between PRO responses and themes. Results Two clusters (perceived high or low disability) emerged. Individuals with low perceived disability scored better on all PROs (P &lt; .05) except for the KOOS-Activities of Daily Living. Internal and external facilitators or barrier subthemes emerged from the interviews. A significant difference was present between clusters and themes. Lower TSK andgreater ACL-RSI and KOOS-Quality of Life scores were associated with more perceived facilitators. Conclusions Participants with greater internal motivation and confidence and a support network had improved PROs. Those with avoidance tendencies, fear, lack of clear expectations, and less social support scored worse on PROs. The TSK, ACL-RSI, and KOOS-Quality of Life scales were best able to capture the constructs associated with perceived wellness, which reinforces their utility in recovery.

QOLP-02. HEALTH-RELATED QUALITY OF LIFE (HRQOL) AMONG PEDIATRIC PATIENTS WITH NEUROFIBROMATOSIS TYPE 1 (NF1) AND PLEXIFORM NEUROFIBROMA (PN) IN THE UNITED STATES: PERSPECTIVES OF THE PATIENTS AND CAREGIVERS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi182-vi183
Author(s):  
Xiaoqin Yang ◽  
Hyun Kyoo Yoo ◽  
Suvina Amin ◽  
Wendy Cheng ◽  
Heather Sipsma ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Upper Extremity ◽  
Pediatric Patients ◽  
Plexiform Neurofibroma ◽  
The United States ◽  
Measurement Information ◽  
Patient Reports ◽  
Patient Reported ◽  
Treatment Naïve

Abstract BACKGROUND PNs occur in 30-50% of pediatric patients with NF1, often resulting in debilitating pain, mobility limitations, significant disfigurement, and may be life-threatening. Real-world evidence on the HRQoL of pediatric NF1 PN patients is limited. METHODS Patients ages 8-18 years with NF1 PN (treatment-naïve/new on selumetinib [≤ 1 month of use]) and their caregivers were recruited through Children’s Tumor Foundation to participate in an online cross-sectional survey (12/2020-1/2021). HRQoL measures included Pediatric Quality of Life Inventory (PedsQL; Acute version), Pain Interference Index (PII), and Patient-Reported Outcomes Measurement Information System (PROMIS) mobility and upper extremity functioning subscales. Patients provided self-reported responses; caregivers provided proxy responses and patient characteristics. Agreement between patient-reports and caregiver proxies was assessed using intra-class correlation coefficients (ICCs). RESULTS 61 patient-caregiver dyads participated in the survey. Patients were mostly white/Caucasian (90.2%), 50.8% female, with a median (range) age of 13.0 (11-16) years. Most were treatment-naïve (96.7%), with NF1 and PN diagnosis for &gt; 5 years (91.8%, 82.0%). On the PedsQL (range: 0-100; higher=better; healthy patient mean scores typically &gt; 80), patient-reported mean scores were 50.3, 56.1, 60.7, and 63.7 for school, emotional, social, and physical functioning; mean total score= 58.5. Caregiver-proxy mean scores ranged from 49.9-61.5 across subscales; mean total score= 55.4. Among patients reporting pain in the last 7 days, PII mean scores (range: 0-6; higher=more interference) were 3.0 (patient-reports) and 2.9 (caregiver proxies). Among patients with movement difficulty in the past 7 days, mean PROMIS scales t-scores (distribution mean= 50; higher=better) were 40.2 and 39.5 (patient-reports), and 35.6 and 30.1 (caregiver proxies), for mobility and upper extremity functioning. ICCs were very good, ranging from 0.85-0.93 across HRQoL measures. CONCLUSION NF1 PN can have substantial negative impact on pediatric patients, as demonstrated across various HRQoL domains, highlighting the importance of collecting patient-centered outcomes to guide treatment decisions.

scholarly journals Health-related Quality of Life of Children and Adolescents after Hematopoietic Stem Cell Transplantation

2020 ◽  
Vol 26 (4) ◽  
pp. 402-410
Author(s):  
Yu Min Hwang ◽  
Kyung-Sook Bang
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Self Esteem ◽  
Health Related Quality ◽  
Hematopoietic Stem ◽  
Symptom Experiences ◽  
Related Quality ◽  
Health Related

Purpose: This study aimed to determine the level of health-related quality of life (HRQoL) of children and adolescents who received hematopoietic stem cell transplantation (HSCT) and to examine factors influencing HRQoL.Methods: This cross-sectional descriptive study involved 85 participants aged 10 to 19 years who received treatment from 3 months to 5 years after HSCT. Symptom experiences, stress and coping, self-esteem, social support, and HRQoL were measured. Descriptive analysis, the independent t-test, one-way analysis of variance, Pearson correlation analysis, and stepwise multiple regression were used for data analysis.Results: The mean HRQoL score was 72.26 points out of 100. HRQoL showed statistically significant correlations with symptom experiences, stress, self-esteem, social support, satisfaction with peer relationships, and perceived attentiveness of the medical team. The most influential predictors of HRQoL were symptom experiences (β=-.51, p<.001) and satisfaction with peer relationships (β=.32, p<.001).Conclusion: The experiences of different symptoms by children and adolescents who receive HSCT must be considered. In addition, nursing interventions, such as self-help meetings with peer groups, should be provided to improve their HRQoL.

scholarly journals How do we evaluate the cost of nosocomial infection? The ECONI protocol: an incidence study with nested case-control evaluating cost and quality of life

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e026687
Author(s):  
Sally Stewart ◽  
Chris Robertson ◽  
Sarkis Manoukian ◽  
Lynne Haahr ◽  
Helen Mason ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nosocomial Infection ◽  
Case Control Study ◽  
Qualitative Interviews ◽  
Case Control ◽  
Standard Case ◽  
Patient Reported ◽  
Nested Case Control ◽  
Control Study

IntroductionHealthcare-associated or nosocomial infection (HAI) is distressing to patients and costly for the National Health Service (NHS). With increasing pressure to demonstrate cost-effectiveness of interventions to control HAI and notwithstanding the risk from antimicrobial-resistant infections, there is a need to understand the incidence rates of HAI and costs incurred by the health system and for patients themselves.Methods and analysisThe Evaluation of Cost of Nosocomial Infection study (ECONI) is an observational incidence survey with record linkage and a nested case-control study that will include postdischarge longitudinal follow-up and qualitative interviews. ECONI will be conducted in one large teaching hospital and one district general hospital in NHS Scotland. The case mix of these hospitals reflects the majority of overnight admissions within Scotland. An incidence survey will record all HAI cases using standard case definitions. Subsequent linkage to routine data sets will provide information on an admission cohort which will be grouped into HAI and non-HAI cases. The case-control study will recruit eligible patients who develop HAI and twice that number without HAI as controls. Patients will be asked to complete five questionnaires: the first during their stay, and four others during the year following discharge from their recruitment admission (1, 3, 6 and 12 months). Multiple data collection methods will include clinical case note review; patient-reported outcome; linkage to electronic health records and qualitative interviews. Outcomes collected encompass infection types; morbidity and mortality; length of stay; quality of life; healthcare utilisation; repeat admissions and postdischarge prescribing.Ethics and disseminationThe study has received a favourable ethical opinion from the Scotland A Research Ethics Committee (reference 16/SS/0199). All publications arising from this study will be published in open-access peer-reviewed journal. Lay-person summaries will be published on the ECONI website.Trial registration numberNCT03253640; Pre-results.

scholarly journals Pediatric patients on renal replacement therapy: clinic, epidemiological, social and economic profile

2021 ◽  
Vol 9 (1) ◽  
pp. 6-10
Author(s):  
Maria Goretti M G Penido ◽  
Celina F Rezende ◽  
André S Alvarenga ◽  
Mariângela L Cherchiglia ◽  
Viviane L Nery
Keyword(s):  
Quality Of Life ◽  
Renal Replacement Therapy ◽  
Children And Adolescents ◽  
Replacement Therapy ◽  
Pediatric Patients ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Economic Profile ◽  
Belo Horizonte

Introduction: Pediatric chronic kidney disease interferes with weight growth, psychosocial status, and also affects quality of life. Objectives: To outline the clinical, epidemiological, social and economic profile of children and adolescents undergoing renal replacement therapy (RRT) at Santa Casa de Belo Horizonte, Minas Gerais - Brazil. Methods: Observational and cross-sectional study. 82 children and adolescents from 0 to 17yrs of age who had undergone RRT with at least three months of registration were included. Patients who died in the first three months on RRT, acute patients, and those older then 18yrs were excluded. Anthropometric analysis was performed and qualitative variables were expressed in absolute frequencies and percentage. Results: 63.5% were male; median age of 9.25yrs at the beginning of RRT. 57% were short, and the BMI was normal in 88%. 82% were followed by nephrologists before RRT, 64.5% had residual diuresis. Hemodialysis was the main initial modality of RRT. Long-term double-lumen catheter was the most widely used vascular access. 85% of those who were at school age were attending school. Most patients lived in the countryside, used public transport, and had a low per capita income. SUS (Health Unic System) was the paying source and were registered at UBS (Basic Health Unity). The mother was the caregiver in 80.5%, 36.6% had glomerulopathy and 26.8% CAKUT uropathy. Sepsis was the main cause of death. 34 patients were transplanted. Discussion and Conclusion: To know the clinical, epidemiological, social, and economic profile of pediatric patients in RRT is important in order to increase the chances of successful treatment and a better quality of life.

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