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Calaminus G, Weinspach S, Teske C, Gobel U. Quality of life in children and adolescents with cancer. First results of an evaluation of 49 patients with the PEDQOL questionnaire. Klin Padiatr 2000 Jul-Aug;212(4):211-5

BACKGROUND: The assessment of Quality of Life (QoL) in childhood cancer survivors is a new field of research, which is important for a better understanding of how children with cancer feel and how treatment can be optimized. The purpose of our examination in a sample of patients treated in our institution was the evaluation of the questions: How do children with cancer reflect on their QoL in comparison to healthy children of the same age? Are there any significant differences in QoL between children with hematological disorders and children with solid tumors and if that is so, which domains are affected?
PATIENTS AND METHODS: We used for the evaluation a pilotversion of a self-rating QoL questionnaire for children between 8 and 18 years (PEDQOL), who was developed for pediatric oncology. 49 children off treatment of whom 51% had leukemia/lymphoma and 49% had solid tumors compared to 62 healthy school children were examined.
RESULTS: The PEDQOL questionnaire was a good accepted measure among the examined children. The reliability scores of the pilotform for the evaluated domains were also satisfactory (Cronbach's-Alpha 0.60). In general QoL was scored good by healthy as well as by ill children. In the group of children with leukemia/lymphoma impairment of QoL was more apparent than in children with solid tumors (domains autonomy, emotional functioning, cognition and familial interactions). Survivors of solid tumors reported less impairment of QoL which was mainly seen in physical functioning and body image.
CONCLUSION: In general QoL scored with the PEDQOL pilotquestionnaire was good for most of the childhood cancer survivors. Children with solid tumors show less impairment than children with leukemia/lymphoma. Therefore it could be suggested, that young age at diagnosis and the following longer period of being dependent on familial support, the isolation from peer groups and the longer way to become independent may be reflected by these results. To obtain reliable results how children with cancer express their QoL and what consequences illness, treatment and long term effects of therapy have on the childrens' QoL a multicenter prospective study is needed. This will be realized in the near future in a project on "Long term effects and quality of life in children with leukemia or medulloblastoma", which is supported by the "Kompetenznetz Padiatrische Onkologie and Hamatologie".


Loblaw DA, Bezjak A, Bunston T. Development and testing of a visit-specific patient satisfaction questionnaire: the Princess Margaret Hospital Satisfaction With Doctor Questionnaire. J Clin Oncol 1999 Jun;17(6):1931-8.

PURPOSE: To develop a psychometrically sound patient-satisfaction-with-physician questionnaire that can be used in an outpatient oncology setting.
PATIENTS AND METHODS: The questionnaire was developed by a four-step process involving a total of 277 cancer patients. The item-generation process utilized input from 95 oncology outpatients, three medical researchers, and the relevant literature. Items were tested by 70 of the above patients. Initial item reduction was achieved by input from another eight patients. Factor analysis and validity testing used data derived from a different group of 174 oncology outpatients. Convergent validity was tested by correlating the Princess Margaret Hospital Patient Satisfaction with Doctor Questionnaire (PMH/PSQ-MD) with Rubin et al's Physician subscale of the Patient's Viewpoint Questionnaire (PS-PVQ) and Smith et al's Patient-Doctor Interaction Scale (PDIS). Divergent validity was tested by comparing these questionnaires with Spitzer's quality of life (QOL) questionnaire.
RESULTS: The final PMH/PSQ-MD is a 29-item self-administered questionnaire with four response categories and a "does not apply" category. Four domains were confirmed by factor analysis: (1) information exchange, (2) interpersonal skills, (3) empathy, and (4) quality of time. The questionnaire has an overall Cronbach's alpha of 0.97; the values for each domain are, respectively, 0.92, 0.90, 0. 88, and 0.88. The PMH/PSQ-MD correlated well with both the PDIS and the PS-PVQ (P <.001 for both). Divergent validity was confirmed with Spitzer's QOL questionnaire.
CONCLUSION: The PMH/PSQ-MD is an outpatient satisfaction questionnaire specific to the patient-physician interaction that has shown excellent internal consistency, is feasible, and has strong support for validity in this oncology population.


Krahn M, Ritvo P, Irvine J, Tomlinson G, Bezjak A, Trachtenberg J, Naglie G. Construction of the patient-oriented prostate utility scale (PORPUS). a multiattribute health state classification system for prostate cancer. J Clin Epidemiol 2000 Sep;53(9):920-30

Health status indexes, such as the EuroQol, consist of a health state classification system and a set of utility weights. Indexes measure quality of life using a 0-1 utility score. Utilities for outcomes in prostate cancer (PC) are of unique importance, but generic indexes do not represent PC outcomes (e.g., sexual, urinary, bowel dysfunction) well, and may not capture their full impact. As a step toward improved utility measurement, we constructed a classification system for PC. We generated items for each of six health domains and rated their importance using interviews with 10 clinical experts and 80 patients. Key concepts were selected for each domain using item importance weightings, and a set of predetermined criteria. Text was developed to express levels of severity within each domain. Experts and two additional groups of patients (n = 40, n = 96) evaluated textual clarity and endorsed the content validity of the instrument. The final system consists of 10 domains with 4-6 levels each. The content validity of the system was endorsed by patients and experts. In conjunction with a set of utility weights, it may be used to develop a health status index, to improve utility measurement in patients, and to serve as a short psychometric (nonutility) instrument.


Ruta DA, Bissias E, Ogston S, Ogden GR. Assessing health outcomes after extraction of third molars: the postoperative symptom severity (PoSSe) scale. Br J Oral Maxillofac Surg 2000; 38:480-7

A postoperative symptom severity (PoSSe) scale was devised from questions commonly used in the clinical assessment of patients who have had third molars extracted, and divided into subscales corresponding to seven main adverse effects that had been identified in a previous study. Ninety-seven patients completed the 15-item questionnaire at one week, and 71 patients at four weeks, after extraction of impacted third molars.After statistical testing, four items were discarded and the final PoSSe scale achieved a high level of internal reliability. Patients' PoSSe scores were highly correlated with scales that measured six distinct health dimensions. The level of social functioning, together with the number of impacted teeth and number of painkillers taken, explained 62% of the variation in PoSSe scores between patients one week postoperatively. The PoSSe was more responsive than the Short Form 36-item Health Survey.In conclusion, we found the PoSSe Scale to be a reliable, valid and responsive measure of the severity of symptoms after extraction of third molars, and of the impact of those symptoms on patients' perceived health. Copyright 2000 The British Association of Oral and Maxillofacial Surgeons.


Lubeck DP, Litwin MS, Henning JM, Mathias SD, Bloor L, Carroll PR. An instrument to measure patient satisfaction with healthcare in an observational database: results of a validation study using data from CaPSURE. Am J Manag Care 2000 Jan;6(1):70-6

OBJECTIVE: To validate a satisfaction measure for use in longitudinal, prospective studies of patient care.
STUDY DESIGN: Patients with biopsy-confirmed prostate cancer (n = 228) who were enrolled in CaPSURE (Cancer of the Prostate Strategic Urologic Research Endeavor) completed a self-administered questionnaire that included a health-related quality-of-life and satisfaction measure. A subset of patients completed the questionnaire again within 30 days.
METHODS: The satisfaction measure contained 6 individual subscales: overall satisfaction with care, contact with providers, confidence in providers, communication skills, humaneness, and a summary scale. Six items surveyed patients' willingness to participate in decision making (participatory style), and these were averaged into a single score. Variability, reliability, stability, and validity were evaluated.
RESULTS: Responses to the items varied substantially. The overall satisfaction scale demonstrated good internal consistency reliability (Cronbach alpha = 0.82) and moderate test-retest reliability (0.62), and it could discriminate between groups of individuals expected to differ with regard to satisfaction (by age and disease stage). Subscale internal consistency reliability (0.37-0.54) and stability (0.38-0.63) were weaker, suggesting that only a single scale should be reported. The participatory scale performed poorly and could not be recommended for future use.
CONCLUSION: The overall satisfaction measure developed for this study demonstrated good reliability and validity and should be useful in other population-based studies in conjunction with other outcome measures.


Wiren L, Whalley D, McKenna S, Wilhelmsen L. Application of a disease-specific, quality-of-life measure (QoL-AGHDA) in growth hormone-deficient adults and a random population sample in Sweden: validation of the measure by rasch analysis. Clin Endocrinol (Oxf) 2000 Feb;52(2):143-52

OBJECTIVE: Growth hormone deficiency (GHD) in adults has been associated with impaired health status and quality of life (QoL) in several studies using generic measures, and in a few studies using recently developed disease-specific measures. Theoretically, disease-specific measures may be more sensitive and succinct than generic measures, and hence prove convenient for general use in clinical practice. The present study sought to validate the scaling properties of the disease-specific QoL-AGHDA measure through the implementation of Rasch analysis. The study also sought to compare, by using the QoL-AGHDA, the QoL of a relatively large Swedish cohort of adults with untreated GHD with that of a reference population also from Sweden.
PATIENTS: The QoL of 111 adults with untreated GHD from Stockholm and Goteborg was compared with that of 1448 adult subjects randomly selected from the population of Goteborg.
MEASUREMENTS: The scaling properties of the QoL-AGHDA were assessed by investigating its fit to a dichotomous Rasch model. Rasch-transformed QoL scores from the QoL-AGHDA questionnaire were stratified by age and gender, and 95% confidence intervals were calculated.
RESULTS: Rasch analysis of the QoL-AGHDA indicated the measure to be robust in terms of its unidimensionality and ordering properties, and lack of differential item functioning. The raw scores produced by the QoL-AGHDA are at the ordinal level. Non-overlapping 95% confidence intervals of Rasch-transformed interval scores in most age categories indicated that men and women with GHD had significantly lower QoL than the reference population.
CONCLUSION: The Swedish QoL-AGHDA has good scaling properties, and hence can be considered a robust measure. It is suitable for assessing quality of life in adults with GH deficiency, and for making comparisons with adults who are not growth hormone deficient. Adult GH deficiency is associated with a significant impairment in QoL.


Last update: November 2006

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