Values of Retinoblastoma Survivors and Parents Regarding Treatment Outcomes: A Qualitative Study

2022 ◽  
Author(s):  
Ana Janic ◽  
Ajoy Vincent ◽  
Jennifer Stinson ◽  
Helen Dimaras
Keyword(s):  
Focus Groups ◽  
Treatment Outcomes ◽  
Treatment Success ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Reported ◽  
Sick Children

PURPOSE: Retinoblastoma is an aggressive pediatric eye cancer. Patient-reported outcome measures reveal important insights into how patients perceive their own health. Currently, there is no widely used or validated measure for assessment of retinoblastoma outcomes. The purpose of this research was to uncover which treatment outcomes that retinoblastoma survivors and their parents value, to inform the development of a future measure. METHODS: This qualitative, cross-sectional study included retinoblastoma survivors age 6 years and older and parents of retinoblastoma survivors. Participants who did not demonstrate fluency in English were excluded. Study participants participated in semistructured interviews or focus groups, either in person at The Hospital for Sick Children, Toronto, Canada, or through secure videoconference, between March 3, 2019, and January 25, 2020. Iterative rounds of opening coding, codebook development, and coresearcher analysis were used to identify key emergent themes and subthemes. RESULTS: Seventeen adults participated in six focus groups. Nine pediatric survivors participated in individual interviews. Four common themes emerged from all participant groups: (1) definition of treatment success, (2) enucleation—acceptance and challenges, (3) treatment outcomes to measure, and (4) need for outcome reporting. An additional, unique theme was identified in all pediatric discussions: worries and coping mechanisms. Treatment outcomes deemed valuable were related to the following domains: psychosocial outcomes, daily functioning, functional vision, retinoblastoma education, cosmetic outcomes, and secondary eye conditions. CONCLUSION: This study represents the first stage in the development of a retinoblastoma-specific patient-reported outcome measure. The findings reveal insight into what outcomes are valued by survivors after treatment and offer promise to improve outcomes assessment for retinoblastoma.

scholarly journals The Correlation of Communication Effectiveness and Patient Satisfaction

2021 ◽  
Vol 8 ◽  
pp. 237437352199883
Author(s):  
Yvonne Versluijs ◽  
Maartje Lemmers ◽  
Laura E. Brown ◽  
Amanda I. Gonzalez ◽  
Joost T. P. Kortlever ◽  
...  
Keyword(s):  
Pain Intensity ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Communication Effectiveness ◽  
Cross Sectional ◽  
Patient Reported ◽  
Ceiling Effects ◽  
As Relationship ◽  
Current Experience

This study assessed the correlation of 9 questions addressing communication effectiveness (the Communication Effectiveness Questionnaire [CEQ]) with other patient-reported experience measures (PREMs; satisfaction, perceived empathy) as well as patient-reported outcome measures (PROMs; pain intensity, activity tolerance) in patients with musculoskeletal illness or injury. In a cross-sectional study, 210 patients visiting an orthopedic surgeon completed the CEQ and measures of satisfaction with the visit, perceived empathy, pain intensity, and activity tolerance. We evaluated correlations between CEQ and other PREMs and CEQ and PROMs. We measured ceiling effects of the PREMs. Communication effectiveness correlated moderately with other PREMs such as satisfaction (ρ = 0.54; P < .001) and perceived empathy (ρ = 0.54; P < .001). Communication effectiveness did not correlate with PROMs: pain intensity (ρ = −0.01; P = .93) and activity tolerance (ρ = −0.05; P = .44). All of the experience measures have high ceiling effects: perceived empathy 37%, satisfaction 80%, and CEQ 46%. The observation of notable correlations of various PREMs, combined with their high ceiling effects, direct us to identify a likely common statistical construct (which we hypothesize as “relationship”) accounting for variation in PREMs, and then develop a PREM which measures that construct in a manner that results in a Gaussian distribution of scores. At least within the limitations of current experience measures, there seems to be no association between illness (PROMs) and experience (PREMs).

scholarly journals Patient-reported outcome measures in hemodialysis patients: results of the first multicenter cross-sectional ePROMs study in France

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Abdallah Guerraoui ◽  
Mathilde Prezelin-Reydit ◽  
Anne Kolko ◽  
Marie Lino-Daniel ◽  
Charlotte Dumas de Roque ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Recovery Time ◽  
Patient Characteristics ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Dialysis Session ◽  
Cross Sectional ◽  
Cardiovascular Comorbidities ◽  
Patient Reported

Abstract Background Kidney failure with replacement therapy and hemodialysis are associated with a decrease in quality of life (QOL). Self-reported QOL symptoms are not always prioritized by the medical team, potentially leading to conflicting priorities with patients. Electronic patient-reported outcome measures (ePROMs) allow physicians to better identify these symptoms. The objective was to describe the prevalence of symptoms self-reported by hemodialysis (HD) patients. Methods A multicenter cross-sectional study was conducted in three HD centers. Patients were included if they were 18 years old or over treated with HD for at least 3 months in a center. Data were collected by the patient via a self-administered ePROMs questionnaire. Data included patient characteristics, post-dialysis fatigue and intensity, recovery time after a session, perceived stress, impaired sleep the day before the dialysis session, current state of health and the change from the past year. A multivariate analysis was conducted to identify relations between symptoms. Results In total, we included 173 patients with a mean age of 66.2 years, a mean ± SD hemodialysis duration of 48.9 ± 58.02 months. The prevalence of fatigue was 72%. 66% had a high level of stress (level B or C). Recovery time was more than 6 h after a HD session for 25% of patients and 78% declared they had a better or unchanged health status than the previous year. Sleep disturbance was associated with cardiovascular comorbidities (OR 5.08 [95% CI, 1.56 to 16.59], p = 0.007). Conclusions Fatigue and stress were the main symptoms reported by HD patients. The patient’s care teams should better consider these symptoms.

scholarly journals Clinico-demographic Profile of Undifferentiated Inflammatory Arthritis Patients

2020 ◽  
Vol 18 (2) ◽  
pp. 288-292
Author(s):  
Binit Vaidya ◽  
Manisha Bhochhibhoya ◽  
Rakshya Joshi ◽  
Bhoj raj Adhikari ◽  
Shweta Nakarmi
Keyword(s):  
Inflammatory Arthritis ◽  
Smoking Status ◽  
Health Assessment ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Tender Joint ◽  
Cross Sectional ◽  
Markers Of Inflammation ◽  
Patient Reported

Background: Undifferentiated inflammatory arthritis is a group of inflammatory joint diseases that do not fulfil the classification criteria for any other rheumatic or connective tissue disorders. This study aims to describe the clinical, demographic and serological features of undifferentiated inflammatory arthritis cases presenting at a tertiary level rheumatology centre from Nepal.Methods: A descriptive cross-sectional study conducted at National Centre for Rheumatic Diseases, Kathmandu, Nepal which represents a midterm analysis of the undifferentiated inflammatory arthritis registry maintained at the centre. Patients more than 18 years of age, who consented for the study having least one swollen or tender joint were enrolled. Ethical approval was obtained from Nepal Health Research Council.Results: A total of 1120 patients were enrolled in the study out of which 941 (84%) were females. The mean age at diagnosis was 46.0±12.8 years and most of them were in overweight range (mean BMI: 27.0±5.8) with 818 (73%) patients having BMI more than 24.0. Patients mostly had low disease activity at presentation (DAS 28 score of 2.5±0.8). Other markers of inflammation and patient reported outcome measures (health assessment questionnaire, patient global assessment and visual analogue scale) were also in the moderate range. Seropositivity for anti-citrullinated peptides and anti-nuclear antibodies was seen in 5 (0.45%) and 43 (3.8%) patients respectively. Majority of patients were non-smokers (77%). Inflammatory arthritis on musculoskeletal ultrasonography was seen in 638 (57%).Conclusions: Undifferentiated inflammatory arthritis was more common in overweight females. Serological markers and smoking status are not common features in these patients. Keywords: Early arthritis; Nepal; undifferentiated arthritis.

Patients’ Experience of Myositis and Further Validation of a Myositis-specific Patient Reported Outcome Measure — Establishing Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12

2015 ◽  
Vol 42 (12) ◽  
pp. 2492-2495 ◽  
Author(s):  
Malin Regardt ◽  
Pari Basharat ◽  
Lisa Christopher-Stine ◽  
Catherine Sarver ◽  
Anita Björn ◽  
...  
Keyword(s):  
Focus Groups ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Specific Patient ◽  
Patient Reported ◽  
Group Interviews ◽  
Patients Experience ◽  
Continue Work

Objective.The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis.Methods.Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM).Results.Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed to continue work toward optimizing PRO assessment in myositis with 2 work streams. The first would continue to conduct and analyze focus groups until saturation in the thematic analysis was achieved to develop a framework that encompassed the patient-relevant aspects of myositis. The second would continue cognitive debriefing of the MAP to identify potential areas for revision. There was agreement that further work would be needed for inclusion body myositis and juvenile dermatomyositis, and that the inclusion of additional contributors such as caregivers and individuals from the pharmaceutical/regulatory spheres would be desirable.Conclusions.The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.

scholarly journals Sex differences in postural orientation errors and association with objective and patient-reported function in patients with ACL injury: an exploratory cross-sectional study

2021 ◽  
Vol 7 (2) ◽  
pp. e001045
Author(s):  
Jenny Nae ◽  
Mark W Creaby ◽  
Anna Cronström ◽  
Eva Ageberg
Keyword(s):  
Sex Differences ◽  
Physical Function ◽  
Cruciate Ligament ◽  
Visual Assessment ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Patient Reported ◽  
Postural Orientation

ObjectivesThere is limited research on sex differences in postural orientation (ie, alignment between body segments) in people with knee injury measured with a clinically applicable method. An understanding of the relationship between postural orientation and physical function may help guide decision making in rehabilitation. The aims were to evaluate (1) sex differences in visual assessment of Postural Orientation Errors (POEs) and (2) the association between POEs and objective and patient-reported physical function, in men and women with anterior cruciate ligament reconstruction (ACLR).MethodsTwenty-four women and 29 men (mean 26.7 (SD 6.5) years) with ACLR were included. Six POEs (lower extremity and trunk) were scored from a video of five tasks with varying difficulty to compute POE scores (total and subscores). Objective physical function was evaluated with the single-leg hop for distance and side hop. Patient-reported physical function was evaluated using patient-reported outcome measures (PROMs).ResultsWomen had significantly more POEs than men (median difference 5.5–25, p≤0.028). More POEs were associated with shorter hop distance and fewer side hops in women (rs= −0.425 to −0.518, p<0.038), but not in men (rs<0.301, p>0.05). No associations were found between POE scores and PROMs, in either sex (rs< –0.246, p>0.05).ConclusionsWomen with ACLR seem to have more POEs compared with men, indicating worse postural orientation. More POEs were associated with worse hop performance, suggesting that POE scores may be used as criteria for rehabilitation progression. The lack of associations between POE scores and PROMs indicate that these measures complement each other.

scholarly journals Which Factors Influence the Use of Patient-Reported Outcome Measures in Dutch Physiotherapy Practice? A Cross-Sectional Study

2020 ◽  
Vol 72 (1) ◽  
pp. 63-70 ◽  
Author(s):  
Guus A. Meerhoff ◽  
Simone A. van Dulmen ◽  
Juliette K. Cruijsberg ◽  
Maria W.G. Nijhuis-van der Sanden ◽  
Philip J. Van der Wees
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Sectional Study ◽  
Cross Sectional ◽  
Physiotherapy Practice ◽  
Patient Reported

scholarly journals Comparison of Corresponding Scores From the Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q in Swedish Patients With Cleft Lip and/or Palate

2020 ◽  
pp. 105566562096412
Author(s):  
Mia Stiernman ◽  
Kristina Klintö ◽  
Martin Persson ◽  
Magnus Becker
Keyword(s):  
Health Care Professionals ◽  
Cleft Lip ◽  
Outcome Measure ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
University Hospital ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Reported ◽  
Patient Opinion

Objective: The primary aim of this study was to compare corresponding scores between 2 existing cleft-specific patient-reported outcome measures (PROMs)—Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q. The second aim of the study was to investigate patient opinion on the 2 PROMs. Design: Cross-sectional questionnaire study. Setting: Participants were recruited from a University Hospital. They answered CHASQ and CLEFT-Q either in the hospital or at home. Participants: Thirty-three participants with cleft lip and/or palate, aged 10 to 19 years. Main Outcome Measure: CHASQ and CLEFT-Q. Results: The CHASQ scores and the corresponding CLEFT-Q scores on appearance correlated significantly. Corresponding scores regarding speech did not correlate significantly. A majority, 15 (58%) participants, answered that they liked CLEFT-Q more than CHASQ, 18 participants (69%) thought CHASQ was easier to complete, and 19 (76%) thought CLEFT-Q would better inform health care professionals. Conclusion: Both instruments showed strengths and limitations. Clinicians will have to consider each instrument’s respective qualities when choosing to implement either PROM.

scholarly journals Title: Fatigue is the predominant patient-reported outcome measure in hemodialysis patients: Results of a multicenter cross-sectional ePROMs Study

2021 ◽  
Author(s):  
Abdallah. Guerraoui ◽  
Mathilde. Prezelin-Reydit ◽  
Anne. Kolko ◽  
Marie. Lino-Daniel ◽  
Charlotte. Dumas Roque ◽  
...  
Keyword(s):  
Recovery Time ◽  
Patient Characteristics ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Dialysis Session ◽  
Cross Sectional ◽  
Dialysis Unit ◽  
Cardiovascular Comorbidities ◽  
Patient Reported

Abstract Background: End Stage renal disease (ESRD) and hemodialysis are associated with a decrease in quality of life (QOL). Self-reported QOL symptoms are not always prioritized by the medical team, potentially leading to conflicting priorities with patients. Electronic patient-reported outcome measures (ePROMs) allow physicians to better identify these symptoms. The objective was to describe the prevalence of symptoms self-reported by hemodialysis (HD) patients.Methods: A multicenter cross-sectional study was conducted in three HD centers. Patients were included if they were 18 years old or over and treated with HD for at least three months in a center. Data were collected by the patient via a self-administered ePROMs questionnaire. Data included patient characteristics, post-dialysis fatigue and intensity, recovery time after a session, perceived stress, impaired sleep the day before the dialysis session, current state of health, and the one-year change. Results: In total, we included 173 patients with a mean age of 66.2 years, a mean ± SD hemodialysis duration of 48.9 ± 58.02 months. They were mainly treated in self-dialysis unit (67%) with at least one comorbidity (72.5%). The prevalence of fatigue was 72.1%. 66.4% had a high level of stress (level B or C). Recovery time was more than 6 hours after a HD session for 24.9% of patients and 78 % declared they had a better or unchanged health status than the previous year. Sleep disturbance was associated with cardiovascular comorbidities. Conclusions: Fatigue and stress were the main symptoms reported by HD patients. The patient’s care teams should better consider these symptoms.Trial registration: Commission Nationale de l'Informatique et des Libertés (CNIL): N° 2214737V0, Date First Registered: 2019-08-20. The CPP (Patient Protection Committee) Ile-de-France VII (2019-12-26) in accordance with French regulations N° ID-RCB: 2019-AO1373-54. Date First Registered: 2019-08-19.All methods were carried out in accordance with the relevant guidelines and regulations. Informed consent was obtained from all subjects, no subjects were under 18 years of age

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