scholarly journals Negligible Effects of the Survey Modes for Patient-Reported Outcomes: A Report From the Childhood Cancer Survivor Study

2020 ◽  
pp. 10-24
Author(s):  
Jin-ah Sim ◽  
Geehong Hyun ◽  
Todd M. Gibson ◽  
Yutaka Yasui ◽  
Wendy Leisenring ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Measurement Properties ◽  
Web Based ◽  
Scale Reliability ◽  
Patient Reported ◽  
Childhood Cancer Survivor Study ◽  
Survivors Of Childhood Cancer ◽  
Anxiety Depression ◽  
The Impact ◽  
Postal Mail

PURPOSE This study compared the measurement properties for multiple modes of survey administration, including postal mail, telephone interview, and Web-based completion of patient-reported outcomes (PROs) among survivors of childhood cancer. METHODS The population included 6,974 adult survivors of childhood cancer in the Childhood Cancer Survivor Study who completed the Brief Symptom Inventory-18 (BSI-18), which measured anxiety, depression, and somatization symptoms. Scale reliability, construct validity, and known-groups validity related to health status were tested for each mode of completion. The multiple indicators and multiple causes technique was used to identify differential item functioning (DIF) for the BSI-18 items that responded through a specific survey mode. The impact of the administration mode was tested by comparing differences in BSI-18 scores between the modes accounting for DIF effects. RESULTS Of the respondents, 58%, 27%, and 15% completed postal mail, Web-based, and telephone surveys, respectively. Survivors who were male; had lower education, lower household income, or poorer health status; or were treated with cranial radiotherapy were more likely to complete a telephone-based survey compared with either a postal mail or Web-based survey (all P < .05). Scale reliability and validity were equivalent across the 3 survey options. One, 2, and 5 items from the anxiety, depression, and somatization domains, respectively, were identified as having significant DIF among survivors who responded by telephone ( P < .05). However, estimated BSI-18 domain scores, especially depression and anxiety, between modes did not differ after accounting for DIF effects. CONCLUSION Certain survivor characteristics were associated with choosing a specific mode for PRO survey completion. However, measurement properties among these modes were equivalent, and the impact of using a specific mode on scores was minimal.

scholarly journals Perceived Health among Adolescent and Young Adult Survivors of Childhood Cancer

2021 ◽  
Vol 28 (1) ◽  
pp. 825-836
Author(s):  
Morgan Young-Speirs ◽  
Caitlin Forbes ◽  
Michaela Patton ◽  
K. Brooke Russell ◽  
Mehak Stokoe ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Health Resources ◽  
Adult Survivors ◽  
Perceived Health ◽  
Good Health ◽  
Adolescent And Young Adult ◽  
Control Group ◽  
Increased Risk ◽  
Patient Reported ◽  
Survivors Of Childhood Cancer

Survivors of childhood cancer (SCCs) are at increased risk of late effects, which are cancer- and treatment-related side-effects that are experienced months to years post-treatment and encapsulate a range of physical, cognitive and emotional problems including secondary malignancies. Perceived health can serve as an indicator of overall health. This study aims to (1) understand how a patient reported outcome (PRO) of perceived health of SCCs compares to controls who have not had a cancer diagnosis and (2) examine the relationships between perceived health and demographic and clinical variables, and health behavior. A total of 209 SCCs (n = 113 (54.10%) males; median age at diagnosis = 6.50 years; median time off treatment = 11.10 years; mean age at study = 19.00 years) were included. SCCs completed annual assessments as part of Long-Term Survivor Clinic appointments, including a question on perceived health answered on a five-point Likert scale. Data were collected retrospectively from medical charts. Perceived health of SCCs was compared to a control group (n = 836) using data from the 2014 Canadian Community Health Survey. Most SCCs (67%) reported excellent or very good health. The mean perceived health of SCCs (2.15 ± 0.91) was not statistically different from population controls (2.10 ± 0.87). Pain (B = 0.35; p < 0.001), physical activity (B = −0.39; p = 0.013) and concerns related to health resources (B = 0.59; p = 0.002) were significant predictors of perceived health. Factors shown to influence SCCs’ perceived health may inform interventions. Exploration into how SCCs develop their conception of health may be warranted.

scholarly journals Fatigue and Sleep Disturbance in Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study (CCSS)

SLEEP ◽  
2008 ◽  
Vol 31 (2) ◽  
pp. 271-281 ◽  
Author(s):  
Daniel A. Mulrooney ◽  
Kirsten K. Ness ◽  
Joseph P. Neglia ◽  
John A. Whitton ◽  
Daniel M. Green ◽  
...  
Keyword(s):  
Sleep Disturbance ◽  
Childhood Cancer ◽  
Cancer Survivor ◽  
Adult Survivors ◽  
Childhood Cancer Survivor ◽  
Childhood Cancer Survivor Study ◽  
Survivors Of Childhood Cancer

Creation of a Tool to Evaluate Supportive Care: Experiences from Socioesthetics

2021 ◽  
Author(s):  
Damien Giacchero ◽  
Guillaume Buiret ◽  
Cecile Grosjean ◽  
CHARLES TAIEB ◽  
Mahasti Saghatchian ◽  
...  
Keyword(s):  
Supportive Care ◽  
External Validation ◽  
Care Patient ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Research Teams ◽  
Patient Reported ◽  
The Impact ◽  
Published Research

Abstract The absence of a specific tool to evaluate the impact of Supportive care in general and socioesthetics in particular as a rendered medical service is undoubtedly at the origin of the lack of published research based on scientific standards.In this context, we developed one supportive-care patient-reported outcome [PRO] using the multistep methods following COSMIN recommendations. Its construction followed all recommended steps: elaboration of the questionnaire, measurement properties of the questionnaire, internal and external validation, test-retest validation and translation, cross-cultural adaptation and cognitive debriefing. In total, our questionnaire includes11 items. It is scored by adding each VAS, making it range from 0 to 110, with a higher benefit when the score is higher. The Cronbach’s α coefficient is 0.88 for the entire questionnaire. The questionnaire thus constructed is a reflection of the patient's feelings, and it is quite natural that the name The “patient centricity questionnaire” (PCQ) was retained and validated by the Scientific Committee. The PCQ correlated negatively and moderately with the PSS, positively and moderately with the mental dimension of the and poorly with the WB12, the physical dimension of the SF-12 and the satisfaction EVA. Constructed according to the recommendations, the PCQ meets the prerequisite for this type of questionnaire. Its short format (11 questions) and simplicity of use allow it to be used by a large number of people and provides an pragmatic answer by making available to research teams a simple, reliable, easy-to-use and validated tool. It makes possible randomized studies to prove the impact on quality of life of the Supportive care in general and socioesthetics" in particular.

scholarly journals Mortality After Breast Cancer Among Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

2019 ◽  
Vol 37 (24) ◽  
pp. 2120-2130 ◽  
Author(s):  
Chaya S. Moskowitz ◽  
Joanne F. Chou ◽  
Joseph P. Neglia ◽  
Ann H. Partridge ◽  
Rebecca M. Howell ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Survivor ◽  
De Novo ◽  
Childhood Cancer Survivors ◽  
Childhood Cancer Survivor ◽  
Malignant Neoplasms ◽  
Childhood Cancer Survivor Study ◽  
Survivors Of Childhood Cancer

PURPOSE Female survivors of childhood cancer have a high risk of subsequent breast cancer. We describe the ensuing risk for mortality and additional breast cancers. PATIENTS AND METHODS Female participants in the Childhood Cancer Survivor Study, a cohort of 5-year survivors of cancer diagnosed between 1970 and 1986 before age 21 years, and subsequently diagnosed with breast cancer (n = 274; median age at breast cancer diagnosis, 38 years; range, 20 to 58 years) were matched to a control group (n = 1,095) with de novo breast cancer. Hazard ratios (HRs) and 95% CIs were estimated from cause-specific proportional hazards models. RESULTS Ninety-two childhood cancer survivors died, 49 as a result of breast cancer. Overall survival after breast cancer was 73% by 10 years. Subsequent risk of death as a result of any cause was higher among childhood cancer survivors than among controls (HR, 2.2; 95% CI, 1.7 to 3.0) and remained elevated after adjusting for breast cancer treatment (HR, 2.4; 95% CI, 1.7 to 3.2). Although breast cancer–specific mortality was modestly elevated among childhood cancer survivors (HR, 1.3; 95% CI, 0.9 to 2.0), survivors were five times more likely to die as a result of other health-related causes, including other subsequent malignant neoplasms and cardiovascular or pulmonary disease (HR, 5.5; 95% CI, 3.4 to 9.0). The cumulative incidence of a second asynchronous breast cancer also was elevated significantly compared with controls ( P < .001). CONCLUSION Mortality after breast cancer was higher in childhood cancer survivors than in women with de novo breast cancer. This increased mortality reflects the burden of comorbidity and highlights the need for risk-reducing interventions.

Sign in / Sign up

Export Citation Format

Share Document