Dataset Information

Development and validation of the patient roles and responsibilities scale in cancer patients.

ABSTRACT:

Purpose

The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring 'real world' roles and responsibilities such as caring for others and financial and employment responsibilities. Here, we report the development and initial validation.

Methods

The 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, participants completed the PRRS alongside the Social Difficulties Inventory (SDI), the main criterion measure for concurrent validity, and the Functional Assessment of Cancer Therapy - General and WHO Quality of Life-BREF (WHOQOL-BREF) for additional convergent validity data. Questionnaires were completed at baseline, 7-days (PRRS only) and 2 months. Demographic data and patient characteristics were collected at baseline.

Results

One hundred and thirty-five patients with stage III/IV breast, lung or gynaecological cancer or melanoma completed the PRRS at least once. Five items performed poorly and were removed from the scale. The final 16 core items selected comprised 3 dimensions: family well-being, responsibilities and social life, and financial well-being, identified in principal component analysis, accounting for 61.5% of total variance. Missing data (0.6%) and floor/ceiling effects were low (0%/1.5%). Cronbach's alpha was 0.9 for the PRRS-16; 0.79-0.87 for the subscales. PRRS showed good test-retest reliability (ICC-0.86), sensitivity to change and the predicted pattern of correlation with validation measures r?=?|0.65-0.77|. The standalone 7-item jobs and careers subscale requires further validation.

Conclusions

Initial evaluation shows that the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real-world studies.

SUBMITTER: Shilling V

PROVIDER: S-EPMC6208586 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Publications

Development and validation of the patient roles and responsibilities scale in cancer patients.

Shilling Valerie V Starkings Rachel R Jenkins Valerie V Cella David D Fallowfield Lesley L

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20180726 11

<h4>Purpose</h4>The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring 'real world' roles and responsibilities such as caring for others and financial and employment responsibilities. Here, we report the development and initial validation.<h4>Methods</h4>The 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, pa ...[more]

PMID: 30051259

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Project description:ImportanceExisting prognostic cancer tools include biological and laboratory variables. However, patients often do not know this information, preventing them from using the tools and understanding their prognosis.ObjectiveTo develop and validate a prognostic survival model for all cancer types that incorporates information on symptoms and performance status over time.Design, setting, and participantsThis is a retrospective, population-based, prognostic study of data from patients diagnosed with cancer from January 1, 2008, to December 31, 2015, in Ontario, Canada. Patients were randomly selected for model derivation (60%) and validation (40%). The derivation cohort was used to develop a multivariable Cox proportional hazards regression model with baseline characteristics under a backward stepwise variable selection process to predict the risk of mortality as a function of time. Covariates included demographic characteristics, clinical information, symptoms and performance status, and health care use. Model performance was assessed on the validation cohort by C statistics and calibration plots. Data analysis was performed from February 6, 2018, to November 6, 2019.Main outcomes and measuresTime to death from diagnosis (year 0) recalculated at each of 4 annual survivor marks after diagnosis (up to year 4).ResultsA total of 255 494 patients diagnosed with cancer were identified (135 699 [53.1%] female; median age, 65 years [interquartile range, 55-73 years]). The cohort decreased to 217 055, 184 822, 143 649, and 109 569 patients for each of the 4 years after diagnosis. In the derivation cohort year 0, and the most common cancers were breast (30 855 [20.1%]), lung (19 111 [12.5%]), and prostate (18 404 [12.0%]). A total of 47 614 (31.1%) had stage III or IV disease. The mean (SD) time to death in year 0 was 567 (715) days. After backward stepwise selection in year 0, the following factors were associated with increased risk of death by more than 10%: being hospitalized; having congestive heart failure, chronic obstructive pulmonary disease, or dementia; having moderate to high pain; having worse well-being; having functional status in the transitional or end-of-life phase; having any problems with appetite; receiving end-of-life home care; and living in a nursing home. Model discrimination was high for all models (C statistic: 0.902 [year 0], 0.912 [year 1], 0.912 [year 2], 0.909 [year 3], and 0.908 [year 4]).Conclusions and relevanceThe model accurately predicted changing cancer survival risk over time using clinical, symptom, and performance status data and appears to have the potential to be a useful prognostic tool that can be completed by patients. This knowledge may support earlier integration of palliative care.

Dataset Information

Development and validation of the patient roles and responsibilities scale in cancer patients.

Purpose

Methods

Results

Conclusions

Publications

Development and validation of the patient roles and responsibilities scale in cancer patients.

Similar Datasets

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