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Validation of the flemish CARES, a quality of life and needs assessment tool for cancer care.

ABSTRACT: BACKGROUND:The Cancer Rehabilitation Evaluation System (CARES) is a quality of life (QOL) and needs assessment instrument of US origin that was developed in the 90's. Since November 2012 the copyright and user fee were abolished and the instrument became publicly available the present study aims to reinvestigate the psychometric properties of the CARES for the Flemish population in Belgium. METHODS:The CARES was translated into Flemish following a translation-back translation process. A sample of 192 cancer patients completed the CARES, concurrent measures, and questions on socio-demographic and medical data. Participants were asked to complete the CARES a second time 1 week later, followed by some questions on their experiences with the instrument. Internal consistency, test-retest reliability, content validity, construct validity, concurrent validity and feasibility of the CARES were subsequently assessed. RESULTS:The Flemish CARES version demonstrated excellent reliability with high internal consistency (range .87-.96) and test-retest ratings (range .70-.91) for all summary scales. Factor analysis replicated the original factor solution of five higher order factors with factor loadings of .325-.851. Correlations with other instruments ranging from |.43|-|.75| confirmed concurrent validity. Feasibility was indicated by the low number of missing items (mean 2.3; SD 5.0) and positive feedback of participants on the instrument. CONCLUSIONS:The Flemish CARES has strong psychometric properties and can as such be a valid tool to assess cancer patients' QOL and needs in research, for example in international comparisons. The positive feedback of participants on the CARES support the usefulness of this tool for systematic assessment of cancer patients' well-being and care needs in clinical practice. TRIAL REGISTRATION:ClinicalTrials.gov: NCT02282696 (July 16, 2014).

SUBMITTER: Schouten B

PROVIDER: S-EPMC5006609 | biostudies-literature | 2016 Aug

REPOSITORIES: biostudies-literature

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Validation of the flemish CARES, a quality of life and needs assessment tool for cancer care.

Schouten Bojoura B Hellings Johan J Van Hoof Elke E Vankrunkelsven Patrick P Bulens Paul P Buntinx Frank F Mebis Jeroen J Vandijck Dominique D Schrooten Ward W

BMC cancer 20160830

<h4>Background</h4>The Cancer Rehabilitation Evaluation System (CARES) is a quality of life (QOL) and needs assessment instrument of US origin that was developed in the 90's. Since November 2012 the copyright and user fee were abolished and the instrument became publicly available the present study aims to reinvestigate the psychometric properties of the CARES for the Flemish population in Belgium.<h4>Methods</h4>The CARES was translated into Flemish following a translation-back translation proc ...[more]

PMID: 27576341

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Project description:BackgroundThe prevalence of cancer increases every year, leading to a growing population of patients and survivors in need for care. To achieve good quality care, a patient-centered approach is essential. Correct and timely detection of needs throughout the different stages of the care trajectory is crucial and can be supported by the use of screening and assessment in a stepped-care approach. The Cancer Rehabilitation Evaluation System (CARES) is a valuable and comprehensive quality of life and needs assessment instrument. For use in Flemish research and clinical practice, the CARES tool was translated for the Dutch-speaking part of Belgium (Flanders) from its original English format. This protocol paper describes the translation and revalidation of this Flemish CARES version.MethodsAfter forward-backward translation of the CARES into Flemish we aim to recruit 150 adult cancer patients with a primary cancer diagnosis (stage I, II or III) for validation. In this study with a combination of qualitative and a quantitative approach, qualitative data will be collected through focus groups and supplemented by two phases of quantitative data collection: i) an initial patient survey containing questions on socio-demographic and medical data, the CARES and seven concurrent instruments; and ii) a second survey administered after 1 week containing the CARES and supplementary questions to explore their impressions on the content and the feasibility of the CARES.DiscussionWith this extensive data collection process, psychometric validity of the Flemish CARES can be tested thoroughly using classical test theory. Internal consistency of summary scales, test-retest reliability, content validity, construct validity, concurrent validity and feasibility of the instrument will be examined. If the Flemish CARES version is found reliable, valid and feasible, it will be used in future research and clinical practice. Comprehensive assessment with the CARES in a stepped-care approach can facilitate timely identification of cancer patients' psychosocial concerns and care needs so it can contribute to efficient provision of patient-centered quality care.Trial registrationClinicalTrials.gov: NCT02282696 (July 16, 2014).

Project description:In The Netherlands, police officers not only come into contact with juvenile offenders, but also with a large number of juveniles who were involved in a criminal offense, but not in the role of a suspect (i.e., juvenile non-offenders). Until now, no valid and reliable instrument was available that can be used by Dutch police officers for estimating the risk for future care needs of juvenile non-offenders. In the present study, the Youth Actuarial Care Needs Assessment Tool for Non-Offenders (Y-ACNAT-NO) was developed for predicting the risk for future care needs that consisted of (1) a future supervision order as imposed by a juvenile court judge and (2) future worrisome incidents involving child abuse, domestic violence/strife, and/or sexual offensive behavior at the juvenile's living address (i.e., problems in the child-rearing environment).Police records of 3,200 juveniles were retrieved from the Dutch police registration system after which the sample was randomly split in a construction (n = 1,549) and validation sample (n = 1,651). The Y-ACNAT-NO was developed by performing an Exhaustive CHAID analysis using the construction sample. The predictive validity of the instrument was examined in the validation sample by calculating several performance indicators that assess discrimination and calibration.The CHAID output yielded an instrument that consisted of six variables and eleven different risk groups. The risk for future care needs ranged from 0.06 in the lowest risk group to 0.83 in the highest risk group. The AUC value in the validation sample was .764 (95% CI [.743, .784]) and Sander's calibration score indicated an average assessment error of 3.74% in risk estimates per risk category.The Y-ACNAT-NO is the first instrument that can be used by Dutch police officers for estimating the risk for future care needs of juvenile non-offenders. The predictive validity of the Y-ACNAT-NO in terms of discrimination and calibration was sufficient to justify its use as an initial screening instrument when a decision is needed about referring a juvenile for further assessment of care needs.

Project description:BACKGROUND:To date, little research has examined the quality of life and cancer-associated needs of bladder cancer patients. The objective of the current study was to assess the quality of life (QoL), informational needs, and supportive care needs (SCN) in a large sample of muscle invasive (MIBC) and non-muscle invasive (NMIBC) bladder cancer survivors across the treatment trajectory (newly diagnosed and undergoing treatment, post-treatment follow-up, and treatment for advanced/recurrent disease). METHODS:Questionnaires were distributed to a convenience sample of patients registered with Bladder Cancer Canada, the Princess Margaret Cancer Centre, or The Ottawa Hospital. Eligibility criteria included being >?18 years of age, English-speaking, and diagnosed with bladder cancer. The questionnaire included an adapted tool to measure informational needs, and validated measures for QoL (Bladder Utility Symptom Scale, BUSS) and SCN (Cancer Survivors' Unmet Needs Measure, CaSUN). QoL scores and unmet needs were calculated and compared between disease groups and cancer trajectory groups. RESULTS AND LIMITATIONS:Of the 1126 surveys distributed, 586 were completed (response?=?52%). Mean age was 67.3?±?10.2 years, and 401 participants (68.7%) were male. The mean QoL score (BUSS) for the sample was 78.1?±?17.9 (median 81.7). Respondents with MIBC had significantly lower QoL scores compared to NMIBC. Further, scores differed across the cancer phase groups with the follow-up surveillance group having significantly higher QoL scores compared to the newly diagnosed and advance/recurrent disease groups. The ten most highly ranked informational needs were from the medical, physical, and practical domains. Eighty-eight percent (95% CI 85-91%) of respondents reported at least one SCN, with a median of 12. Over half of the participants (54%, 95% CI 49-59%) had at least one unmet need and 15% had ??10 unmet needs. Newly diagnosed participants had the highest number of unmet needs. CONCLUSION:We found that the number of unmet supportive care needs and quality of life differed across cancer trajectory and disease groups. Future efforts should focus on the development and evaluation of tailored resources and programs to address the needs of people diagnosed and treated for BC.

Project description:IntroductionUnmet needs in patients with cancer and their carers are common but poorly identified and addressed. The Needs Assessment Tool-Cancer (NAT-C) is a structured consultation guide to identify and triage patient and carer unmet needs. The NAT-C is validated, but its effectiveness in reducing unmet patient and carer needs in primary care is unknown.Methods and analysisCluster randomised controlled trial with internal pilot and embedded process evaluation to test the clinical and cost effectiveness of the NAT-C in primary care for people with active cancer in reducing unmet patient and carer need, compared with usual care. We will recruit 1080 patients with active cancer (and carers if relevant) from 54 general practices in England.Participating practices will be randomised 1:1 to either deliver an NAT-guided clinical consultation plus usual care or to usual care alone. Consenting participants with active cancer and their carers (if nominated) will be asked to complete study questionnaires at baseline, 1 and 3 months for all, 6 months except for those recruited outside of the last 3 months of recruitment, and attend an NAT-C appointment if allocated to an intervention practice. An internal pilot will assess: site and participant recruitment, intervention uptake and follow-up rates. The primary outcome, the proportion of patients with an unmet need on the Supportive Care Needs Survey Short Form 34 at 3 months postregistration, will be analysed using a multilevel logistic regression. Mixed-methods process evaluation informed by Normalisation Process Theory will use quantitative survey and interview data from clinicians and key stakeholders in cancer care to develop an implementation strategy for nationwide rollout of the NAT-C if the intervention is cost-effective.Ethics and disseminationEthical approval from London-Surrey REC (20/LO/0312). Results will be peer-reviewed, published and made available to research participants.Trial registration numberISRCTN15497400.

Project description:BackgroundAdvanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients' QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population.MethodsTo identify QoL domains, we conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our treatment centre. We used inductive thematic content analysis to code and categorize respondents' viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices.ResultsApart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version.ConclusionsAdvance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

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Validation of the flemish CARES, a quality of life and needs assessment tool for cancer care.

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Validation of the flemish CARES, a quality of life and needs assessment tool for cancer care.

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