scholarly journals Measuring What Matters for Children: A Systematic Review of Frequently Used Pediatric Generic PRO Instruments

2021 ◽  
Author(s):  
Tasneem Arsiwala ◽  
Nuzhat Afroz ◽  
Kattayoun Kordy ◽  
Christel Naujoks ◽  
Francesco Patalano
Keyword(s):  
Quality Of Life ◽  
Child Health ◽  
Clinical Studies ◽  
Task Force ◽  
Emotional Health ◽  
Research Practices ◽  
European Collaboration ◽  
Patient Reported ◽  
Good Research

Abstract Objective To provide an assessment of the quality of the most frequently used self-reported, generic patient-reported outcome measures (PROMs) that measure health-related quality of life (HRQoL) in children against the good research practices recommended by ISPOR task force for the pediatric population. Method Literature search was conducted on OvidSP database to identify the generic pediatric PROMs used in published clinical studies. The quality of PROMs used in more than ten clinical studies were descriptively evaluated against the ISPOR task force’s good research practices. Results Six PROMs were evaluated, namely Pediatric Quality-of-Life inventory 4.0 (PedsQL), Child Health Questionnaire (CHQ), KIDSCREEN, KINDL, DISABKIDS and Child Health and Illness Profile (CHIP). All PROMs, except KIDSCREEN, had versions for different age ranges. Domains of physical, social, emotional health and school activities were common across all the instruments, while domains of family activities, parent relations, independence, and self-esteem were not present in all. Children’s input was sought during the development process of PROMs. Likert scales were used in all the instruments, supplemented with faces (smileys) in instruments for children under 8 years. KIDSCREEN and DISABKIDS were developed in a European collaboration project considering the cross-cultural impact during development. Conclusion The comparison of the instruments highlights differences in the versions for different pediatric age groups. None of the PROMs fulfill all the good research practices recommended by the ISPOR task force. Further research is needed to define which age-appropriate domains are important for older children and adolescents.

Feasibility of a patient-reported outcomes quality-of-life instrument to improve care in underserved, ethnic minority patients with cancer.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 65-65
Author(s):  
Nandita Khera ◽  
Gilbert Ramos ◽  
Briant Fruth ◽  
Waqas Arslan ◽  
Ian K. Komenaka ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ethnic Minority ◽  
Cancer Diagnosis ◽  
Patient Reported Outcomes ◽  
Emotional Health ◽  
Healthcare Delivery ◽  
Spanish Version ◽  
Patient Reported ◽  
Patient Concerns

65 Background: We need better methods to understand the social determinants of health and integrate psychosocial and economic sequelae of cancer and its treatment into healthcare delivery for ethnoculturally diverse population. A Patient-Reported Outcomes Quality of Life (PROQOL) instrument has been developed to capture less commonly discussed patient concerns (Personal Relationships, Emotional health, Physical health, Cancer diagnosis and treatment, Money and Care planning) and improve patient-provider communication. We sought to adapt this instrument and pilot it in underserved, ethnically diverse solid tumor and hematological malignancies patients at Maricopa Integrated Health System (MIHS) in Phoenix, AZ. Methods: Two focus groups (FG) were conducted to understand patient perspectives of an adapted Spanish version of PROQOL. This version was then piloted among patients on active cancer treatment. Patients also completed a Linear Analog Scale Assessment (from 1-10) for quality of life (QOL) and its domains (higher scores indicate better QOL). Results: All participants in both FG (11/12 female) were Hispanics, with a median age of 53 years. Participants agreed that the domains covered in the PROQOL represented the most important psychosocial needs in their cancer continuum. No difficulty in understanding the individual domains or questions for delving deeper into each domain was noted. Median age of 34 pilot study participants (74% female) was 48 years, 79% were Hispanic, 10% were African Americans and median household income was $ 43,924 (range 23,002-98,382). 28/34 completed the Spanish version. Most common concerns were ‘Money’ (32%): difficulty paying medical bills and non-medical expenses and ‘Cancer Diagnosis, Treatment and Survivorship’ (32%): type of cancer and treatment concerns. Median overall QOL was 8 (range 3-10). Conclusions: PROQOL is feasible for systematic capture of patient concerns in underserved, ethnic minority cancer patients. A better understanding of these challenges can help design interventions to improve psychosocial and financial outcomes for the vulnerable groups and decrease disparities in care delivery.

scholarly journals Lived Experiences of Adolescent Athletes Following Sport-Related Concussion

2017 ◽  
Vol 5 (12) ◽  
pp. 232596711774503 ◽  
Author(s):  
Tamara C. Valovich McLeod ◽  
Alyssa J. Wagner ◽  
Cailee E. Welch Bacon
Keyword(s):  
Quality Of Life ◽  
Emotional Health ◽  
Well Being ◽  
Health Related Quality ◽  
Adolescent Athletes ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Interscholastic Athletes

Background: Previous studies have identified the effect of sport-related concussion on health-related quality of life through the use of patient-reported outcome measures. However, there has been little research exploring the underlying mechanisms that influence these perceptions of health-related quality of life among adolescent athletes who have sustained a sport-related concussion. Purpose: To explore the psychosocial aspects of concussion among adolescent athletes. Study Design: Case series; Level of evidence, 4. Methods: A total of 12 interscholastic athletes (4 girls, 8 boys; mean ± SD age, 15.7 ± 1.7 years; grade level, 10.2 ± 1.4) were interviewed via a semistructured interview protocol between 15 and 30 days postinjury. Data analysis was guided by the consensual qualitative research tradition. Themes and categories emerged through consensus by a 3-person research team, and bias was minimized through the use of multiple-analyst triangulation. Results: Participants identified numerous postconcussion symptoms that resulted in increasing difficulty with emotions (eg, irritable, easily frustrated), roles at school (eg, concentration difficulties, fatigue), and roles in their social environment (eg, letting the team down, not being able to contribute to sport). As a result, participants expressed how they tried to minimize or mask symptoms to decrease the potential of being viewed differently by their peers. Conclusion: Adolescent athletes perceived a significant effect of sport-related concussion on numerous areas of psychosocial and emotional health and well-being. Anticipatory guidance—with education regarding the possible signs and symptoms, risk factors, and recovery expectations following a concussion—is important to include in postinjury management. A better understanding of sport-related concussion and expected recovery could help to improve perceptions of this injury among interscholastic athletes. Additionally, best practices should be identified to assist health care professionals and school personnel in the development of temporary adjustments or formal academic adjustment policies in the secondary school setting, therefore ensuring that the patients receive the support that they need to maintain their roles as students.

scholarly journals BEAM study (Breathing, Education, Awareness, Movement): a randomised controlled feasibility trial of tai chi exercise in patients with COPD

2020 ◽  
Vol 7 (1) ◽  
pp. e000697
Author(s):  
Gloria Y. Yeh ◽  
Daniel Litrownik ◽  
Peter M. Wayne ◽  
Douglas Beach ◽  
Elizabeth S. Klings ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Self Efficacy ◽  
Tai Chi ◽  
Emotional Health ◽  
Outcome Measurement ◽  
Feasibility Trial ◽  
Medical Setting ◽  
Patient Reported

BackgroundDespite therapeutic advances, the management of chronic obstructive pulmonary disease (COPD) remains complex. There is growing interest in multidimensional, mind-body exercises to improve both physical and psychosocial aspects of COPD burden. Few US data are available in this population on tai chi (TC) a mind-body exercise incorporating physical activity, breathing and mindful awareness. We explored feasibility and preliminary efficacy of TC in COPD in an US academic medical setting.MethodsPatients with COPD Global Obstructive Lung Disease (GOLD) stages 2–4 were randomised to a 12-week TC programme or education control. At 12 weeks, those in TC were randomised again to continue in maintenance classes or not to further explore optimal duration. All groups were followed to 24 weeks. Feasibility/safety parameters were analysed descriptively. Preliminary between-group differences were estimated in symptoms (dyspnoea, fatigue), health-related quality-of-life (Chronic Respiratory Questionnaire CRQ), cognitive-emotional measures (mood, COPD self-efficacy) and functional status (6 min walk test, lower body strength, flexibility, physical activity).ResultsNinety-two subjects were randomised (N=61 TC, N=31 education). Mean age was 68±8 years, 66% male, mean forced expiratory volume in 1 s % predicted 57±13, 28% were GOLD stage 3–4. Overall retention was 85%. Nineteen adverse events occurred, most being study-unrelated COPD exacerbations. From baseline to 12 weeks, there were between-group improvements favouring TC, in CRQ-total (Cohen’s d effect size (ES)=0.46; adj mean diff (AMD)=0.31), CRQ-emotion (ES=0.54; AMD=0.49), Centre for Epidemiologic Studies Depression (ES=−0.37; AMD=2.39) and Patient-Reported Outcome Measurement Information System (PROMIS)-fatigue (ES=−0.34; AMD=−0.17). From baseline to 24 weeks, there was an improvement favouring TC in CRQ-dyspnoea (ES=0.41; AMD=0.46). Among TC participants, there was a positive effect of maintenance classes on self-efficacy (ES=−0.69; AMD=−0.40), 6 min walk (ES=0.56; AMD=49.26 feet), PROMIS-fatigue (ES=−0.41; AMD=−0.28) and chair stand (0.43; AMD=0.56).ConclusionTC in patients with COPD is feasible and safe. Preliminary analyses support a potential modest role in improving quality-of-life, cognitive-emotional health and function that should be further studied.Trial registration numberNCT01551953.IRB referenceBIDMC 2010P-000412; VA 2540.

scholarly journals Estimating Health-State Utility for Economic Models in Clinical Studies: An ISPOR Good Research Practices Task Force Report

2016 ◽  
Vol 19 (6) ◽  
pp. 704-719 ◽  
Author(s):  
Sorrel E. Wolowacz ◽  
Andrew Briggs ◽  
Vasily Belozeroff ◽  
Philip Clarke ◽  
Lynda Doward ◽  
...  
Keyword(s):  
Clinical Studies ◽  
Task Force ◽  
Economic Models ◽  
Health State Utility ◽  
Health State ◽  
Research Practices ◽  
Task Force Report ◽  
Good Research
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