Systematic review of the psychometric properties of disease‐specific,quality‐of‐life questionnaires for patients with hepatobiliary or pancreatic cancers

Aim

To systematically review the quality of the psychometric properties of disease‐specific quality‐of‐life questionnaires for patients with hepatobiliary or pancreatic cancers in order to help researchers and clinicians to select the most appropriate health‐related quality‐of‐life (HRQoL) instruments.

Methods

MEDLINE from 1950, CINAHL from 1960, EMBASE from 1980, and PsycINFO from 1967, as well as additional sources were searched. The quality of the psychometric properties of the included instruments was evaluated by using the quality criteria for measurement properties of health status questionnaires.

Results

Ten studies that examined seven instruments were identified. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire‐Biliary Cancer, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire‐Liver Metastases of Colorectal Cancer, the Functional Assessment of Cancer Therapy‐Hepatobiliary Questionnaire, and the Quality of Life for Patients with Liver Cancer Instrument achieved satisfactory results in relation to the quality of their psychometric properties.

Conclusion

Several well‐validated instruments exist to adequately assess disease‐specific HRQoL in patients with hepatobiliary or pancreatic cancers. Further improvement of the already‐existing, promising measures is recommended.

     

Domains of the Cerebral Palsy Quality of Life Questionnaire (CP QOL) for Children and Adolescents: Spanish Adaptation and Psychometric Properties

Promoting quality of life (QOL) has become a goal of support services for people with disabilities and a key intervention outcome. The aim of this study was to examine the psychometric properties of the adapted Spanish version of the Cerebral Palsy Quality of Life Questionnaire (CP QOL) for children and adolescents, in its self-report and primary caregiver-report versions. The Spanish versions were translated and adapted following the guidelines for cross-cultural adaptation. Eighty-two children and adolescents with CP and 304 primary caregivers completed the final Spanish versions of the CP QOL, the KIDSCREEN-27, and instruments to measure functioning. Exploratory Factor Analysis yielded a distinguishable domain structure similar to the original English version. Cronbach’s alpha ranged between .75 and .91 for primary caregiver reports and between .81 and .91 for child/teen self-reports. Moderate and weak correlations were observed between the CP QOL and the generic measure of QOL and functioning. This study provides a valid instrument to assess the QOL of children and adolescents with CP in the Spanish context.

     

Outcome measures for economic evaluations and cost-effectiveness analyses of interventions for people with intellectual disabilities: A methodological systematic review

Background

Mainstream economic evaluations methods may not be appropriate to capture the range of effects triggered by interventions for people with intellectual disabilities. In this systematic review, we aimed to identify, assess and synthesise the arguments in the literature on how the effects of interventions for people with intellectual disabilities could be measured in economic evaluations.

Method

We searched for studies providing relevant arguments by running multi-database, backward, forward citation and grey literature searches. Following title/abstract and full-text screening, the arguments extracted from the included studies were summarised and qualitatively assessed in a narrative synthesis.

Results

Our final analysis included three studies, with their arguments summarised in different methodological areas.

Conclusions

Based on the evidence, we suggest the use of techniques more attuned to the population with intellectual disabilities, such sensitive preference-based instruments to collect health states data, and mapping algorithms to obtain utility values.     

Methodological challenges and potentials of health-related quality of life evaluation in children with chronic health conditions under medical health care]

Health-related quality of life (HRQoL) denotes the patients' perception of well-being and function in physical, emotional, mental, social and everyday life areas. In adult medicine, HRQoL has been established as an outcome criterion to evaluate the quality and effect of different therapies. During the past 20 years, a multitude of instruments to assess HRQoL has been developed, mostly for adults, complying with psychometric standards concerning the reliability, validity and sensitivity of the scales. HRQoL research in children, however, is still in a developmental stage.The present paper describes challenges to the assessment of quality of life in children and adolescents: approaches to assess quality of life include patients' self-report versus report by other persons. Interviews, questionnaires and computer-assisted methods have been used. Generic and disease-specific (targeted) instruments can be applied. Frequently used generic measures are described and an international project to develop a set of quality of life instruments for children with chronic conditions is reported. The application of these measures in the research context using examples from a German prospective study in pediatric rehabilitation is exemplarily described and highlights the potential benefit of implementing these methods in epidemiologic and clinical studies.     

Assessing the social impact of cancer: a review of available tools

Objectives

Taking care of oncological patients holistically—from a biological, social, and psychological point of view—also involves evaluating the social aspects of the disease. In the present study, we provide further insights on how investigations regarding the social impact of an oncological disease are conducted with specifically designed tools on patients who have personally been affected. The objective is then to understand how the social dimension is theorized and, therefore, which practical aspects of subjective experience are employed to assess the social impact.

Method

We performed a systematic review of the literature identified by MedLine and PsycINFO databases.

Results

Of the 469 articles obtained from the search, 27 deal with 14 different measurement instruments of the social impact of the oncological experience. Of the identified tools, 71?% were specifically designed for the oncological setting and were heterogeneous both in the investigated domains as well as social referrals; 64?% of these had a multidimensional structure. Internal consistency was reported for all instruments, while temporal stability only for 36?% of the tools. Construct validity and concurrent validity were reported for 79?% of the instruments, criterion and predictive validity for one instrument only, external validity for 18?% of the tools, and cross-cultural validity for one instrument only. The content was directly available for most instruments.

Conclusions

The great interest in this subject as borne out by the amount of studies published in international psycho-oncological literature confirms the importance of having a valid and reliable instrument specifically dedicated to measuring the social impact of the oncological experience. At the same time, further investigation is required to investigate the psychometric properties of the existing tools.     

The impact of mindfulness interventions for staff on the care,treatment, and experiences of people with intellectual disabilities: A systematic review

Background

Mindfulness interventions have been shown to ameliorate stress in support staff working with people with intellectual disabilities. This review aimed to explore what impact mindfulness interventions for staff have on their care and support behaviours, and on the experiences of people with intellectual disabilities receiving support.

Method

A systematic search of PsycINFO, Web of Science, ASSIA, and PubMed identified nine studies meeting the inclusion criteria. Outcomes were collated and a quality assessment tool was used to inform the critical analysis of the studies.

Results

Despite identified methodological issues, positive results were consistently reported. These included reduced use of restrictive practices by staff, increased positive interactions between staff and people with intellectual disabilities, and reduced aggression displayed by people with intellectual disabilities.

Conclusions

Further research in this area is required; however, this review supports the benefits of mindfulness on staff behaviour and the quality of life of people with intellectual disabilities.     

Systematic Review of Measurement Property Evidence for 8 Financial Management Instruments in Populations With Acquired Cognitive Impairment

Objectives

To critically appraise the measurement property evidence (ie, psychometric) for 8 observation-based financial management assessment instruments.

A comparative review of measurement instruments to inform and evaluate effectiveness of disability inclusive development

Abstract

Purpose: A review of existing measurement instruments was conducted to examine their suitability to measure disability prevalence and assess quality of life, protection of disability rights and community participation by people with disabilities, specifically within the context of development programs in low and middle-income countries. Methods: From a search of PubMed and the grey literature, potentially relevant measurement instruments were identified and examined for their content and psychometric properties, where possible. Criteria for inclusion were: based on the WHO’s International Classification of Functioning Disability and Health (ICF), used quantitative methods, suitable for population-based studies of disability inclusive development in English and published after 1990. Characteristics of existing instruments were analysed according to components of the ICF and quality of life domains. Results: Ten instruments were identified and reviewed according to the criteria listed above. Each version of instruments was analysed separately. Only three instruments included a component on quality of life. Domains from the ICF that were addressed by some but not all instruments included the environment, technology and communication. Conclusion: The measurement instruments reviewed covered the range of elements required to measure disability-inclusion within development contexts. However no single measurement instrument has the capacity to measure both disability prevalence and changes in quality of life according to contemporary disability paradigms. The review of measurement instruments supports the need for developing an instrument specifically intended to measure disability inclusive practice within development programs.

• Implications for Rehabilitation

• Surveys and tools are needed to plan disability inclusive development.

• Existing measurement tools to determine prevalence of disability, wellbeing, rights and access to the community were reviewed.

• No single validated tool exists for population-based studies, uses quantitative methods and the components of the ICF to measure prevalence of disability, well-being of people with disability and their access to their communities.

• A measurement tool that reflects the UNCRPD and addresses all components of the ICF is needed to assist in disability inclusive development, especially in low and mid resource countries.

     

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges

Purpose

The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care.

Conclusions

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care.

Practice Implications

Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.     

Development of a computer-administered mobility questionnaire

Purpose  

Mobility is an important aspect of physical functioning, but feasible and validated self-report assessment instruments for palliative patients are lacking. This study is a part of the European Palliative Research Network research programme, aiming to develop an internationally endorsed assessment tool for symptoms and functioning in palliative cancer care. The specific aim of the present study is to assess psychometric properties of a mobility item bank, with regards to uni-dimensionality, functional coverage, redundant items and gaps in the scale.     

Assessment of activity limitations and participation restrictions with persons with chronic fatigue syndrome: a systematic review

Abstract

Purpose: To summarize measurement instruments used to evaluate activity limitations and participation restrictions in patients with chronic fatigue syndrome (CFS) and review the psychometric properties of these instruments. Method: General information of all included measurement instruments was extracted. The methodological quality was evaluated using the COSMIN checklist. Results of the measurement properties were rated based on the quality criteria of Terwee et?al. Finally, overall quality was defined per psychometric property and measurement instrument by use of the quality criteria by Schellingerhout et?al. Results: A total of 68 articles were identified of which eight evaluated the psychometric properties of a measurement instrument assessing activity limitations and participation restrictions. One disease-specific and 37 generic measurement instruments were found. Limited evidence was found for the psychometric properties and clinical usability of these instruments. However, the CFS-activities and participation questionnaire (APQ) is a disease-specific instrument with moderate content and construct validity. Conclusion: The psychometric properties of the reviewed measurement instruments to evaluate activity limitations and participation restrictions are not sufficiently evaluated. Future research is needed to evaluate the psychometric properties of the measurement instruments, including the other properties of the CFS-APQ. If it is necessary to use a measurement instrument, the CFS-APQ is recommended.

• Implications for Rehabilitation

• Chronic fatigue syndrome (CFS).

• Chronic fatigue syndrome causes activity limitations and participation restrictions in one or more areas of life.

• Standardized, reliable and valid measurement instruments are necessary to identify these limitations and restrictions.

• Currently, no measurement instrument is sufficiently evaluated with persons with CFS.

• If a measurement instrument is needed to identify activity limitations and participation restrictions with persons with CFS, it is recommended to use the CFS-APQ in clinical practice and scientific research.

     

Postural Control and Fear of Falling Assessment in People With Chronic Obstructive Pulmonary Disease: A Systematic Review of Instruments, International Classification of Functioning,Disability and Health Linkage,and Measurement Properties

Objectives

To systematically review the instruments used to assess postural control and fear of falling in people with chronic obstructive pulmonary disease (COPD), and to synthesize and evaluate their breadth of content and measurement properties.

Data Sources

MEDLINE, EMBASE, Web of Science, CINAHL, CENTRAL, PsycINFO, PEDro, and OTSeeker databases searched in September 2012.

Study Selection

Two independent reviewers performed the selection of articles, the ICF linking process and quality assessment. Only quantitative studies were included, irrespective of language or publication date.

Data Extraction

This systematic review comprised two phases. Phase 1 aimed to identify the commonly used instruments to assess postural control and fear of falling in the COPD literature. The breadth of content of each instrument was examined based on the International Classification of Functioning, Disability and Health (ICF). In phase 2, a measurement property search filter was adopted and used in four electronic databases to retrieve properties reported in the COPD population. The COSMIN checklist was used to assess the methodological quality of each measurement property reported.

Data Synthesis

Seventeen out of 401 publications were eligible in phase 1. Seventeen instruments were identified including 15 for postural control and 2 for fear of falling assessment. The Berg Balance Scale, the Short Physical Performance Battery, and the Activities-specific Balance Confidence (ABC) scale were the most frequently used instruments to assess postural control and fear of falling respectively. The ICF categories covered varied considerably among instruments. The Balance Evaluation Systems test and ABC presented the greatest breadth of content. Measurement properties reported included criterion predictive validity (4 instruments), construct validity (11 instruments) and responsiveness (1 instrument), with inconsistent findings based on ‘fair’ and ‘poor’ quality studies.

Conclusions

Different instruments with heterogeneous content have been used to assess postural control and fear of falling outcomes. Standardized assessment methods and best evidence on measurement properties is required in the COPD literature.     

Instruments evaluating the quality of the clinical learning environment in nursing education: A systematic review of psychometric properties

BackgroundThe clinical learning environment is fundamental to nursing education paths, capable of affecting learning processes and outcomes. Several instruments have been developed in nursing education, aimed at evaluating the quality of the clinical learning environments; however, no systematic review of the psychometric properties and methodological quality of these studies has been performed to date.ObjectivesThe aims of the study were: 1) to identify validated instruments evaluating the clinical learning environments in nursing education; 2) to evaluate critically the methodological quality of the psychometric property estimation used; and 3) to compare psychometric properties across the instruments available.DesignA systematic review of the literature (using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines) and an evaluation of the methodological quality of psychometric properties (using the COnsensus-based Standards for the selection of health Measurement INstruments guidelines).Data sourcesThe Medline and CINAHL databases were searched. Eligible studies were those that satisfied the following criteria: a) validation studies of instruments evaluating the quality of clinical learning environments; b) in nursing education; c) published in English or Italian; d) before April 2016.Review methodsThe included studies were evaluated for the methodological quality of the psychometric properties measured and then compared in terms of both the psychometric properties and the methodological quality of the processes used.ResultsThe search strategy yielded a total of 26 studies and eight clinical learning environment evaluation instruments. A variety of psychometric properties have been estimated for each instrument, with differing qualities in the methodology used. Concept and construct validity were poorly assessed in terms of their significance and rarely judged by the target population (nursing students). Some properties were rarely considered (e.g., reliability, measurement error, criterion validity), whereas others were frequently estimated, but using different coefficients and statistical analyses (e.g., internal consistency, structural validity), thus rendering comparison across instruments difficult. Moreover, the methodological quality adopted in the property assessments was poor or fair in most studies, compromising the goodness of the psychometric values estimated.ConclusionsClinical learning placements represent the key strategies in educating the future nursing workforce: instruments evaluating the quality of the settings, as well as their capacity to promote significant learning, are strongly recommended. Studies estimating psychometric properties, using an increased quality of research methodologies are needed in order to support nursing educators in the process of clinical placements accreditation and quality improvement.     

Social competence in pediatric brain tumor survivors: evaluating the psychometric properties of assessment tools

Purpose

This study was conducted to identify and describe the instruments that have been used to measure social competence in pediatric brain tumor patients and to summarize the psychometric properties of the most common instruments used to measure social competence in pediatric brain tumor patients.

Methods

The following psychometric properties were assessed: (a) construct validity; (b) internal consistency reliability; (c) test retest and inter-rater reliability; and (d) responsiveness. Measures were evaluated based on published criteria for psychometric suitability.

Results

Ten studies met inclusion criteria for the current review. Based on review of these studies, the Social Skills Rating System (SSRS) yielded the most comprehensive data on psychometric properties. Psychometric properties for the SSRS were considered to be adequate in a pediatric brain tumor population. Specifically, the SSRS meets criteria for construct validity, internal consistency and responsiveness. Other commonly used measures included the CBCL/YSR, the PedsQL4.0 and the Revised Class Play each with sufficient psychometric properties.

Conclusions

The SSRS is an appropriate tool to measure social competence in pediatric brain tumor patients. Data for inter-rater reliability and responsiveness in this population is still lacking.     

Head-to-head comparisons of quality of life instruments for young adult survivors of childhood cancer

Purpose

Few studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared the psychometric properties of two survivor-specific instruments, the Quality of Life–Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS).

Methods

Data from 151 YASCC who enrolled in cancer/tumor registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index, and root mean square error of approximation. We examined convergent/discriminant validity by comparing Pearson’s correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments versus heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments.

Results

YASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity.

Conclusions

Neither instrument is superior. Item response theory is suggested to select high-quality items from different instruments to improve HRQOL measure for YASCC.     

Health related quality of life in children and adolescents: reliability and validity of the Norwegian version of KIDSCREEN-52 questionnaire, a cross sectional study

Background

A number of health-related quality of life instruments for children and adolescents have been developed and used in European countries during recent years. However, few well-validated instruments have been translated into Norwegian. As part of a larger investigation about pain and health-related quality of life, the KIDSCREEN-52, a cross-cultural 10-scale questionnaire, was translated into Norwegian. The aim of this study was to examine psychometric properties of the first Norwegian version of KIDSCREEN, particularly reliability and construct validity.

Methods

A cross-sectional study was carried out, and a cluster sample of 20 randomly selected schools was drawn. The final study sample encompassed 1123 children and adolescents, aged 8-18 years. Internal consistency reliability was assessed using Cronbach's alpha. Construct validity was examined by confirmatory factor analysis, and by analysing whether the KIDSCREEN scales correlated with comparable KINDL scales, another health-related quality of life instrument. The analyses were conducted using SPSS (16.0) and Lisrel (8.7).

Results

The Cronbach's alpha value was above 0.80 for all KIDSCREEN scales, suggesting good internal consistency reliability for the instrument. Confirmatory factor analysis shows that most of the KIDSCREEN scales fit the data well. Fit statistics for the 10-factor model were satisfactory, although some scales displayed residual covariance. Several confirmatory factor analysis models were fitted to the data, and the model specified according to the 10-dimensional KIDSCREEN-52 measurement model with correlated first-order factors fitted the data well (RMSEA = 0.04; CFI = 0.99). The KIDSCREEN scales correlated sufficiently highly with comparable KINDL scales.

Conclusions

The results of the present study indicate that the Norwegian version of the KIDSCREEN-52 seems to work well in a Norwegian context, and is a valid and reliable generic health-related quality of life instrument. It is considered appropriate for screening in the public health area, for example, in school health care.     

Psychometric Evaluation of the Adherence in Diabetes Questionnaire

OBJECTIVE

To assess the psychometric properties of a short, new, self-administered questionnaire (17–19 items) for evaluating the adherence behavior of children and adolescents with type 1 diabetes and their caregivers. This instrument has separate versions depending on the means of insulin administration, i.e., continuous subcutaneous insulin infusion (Adherence in Diabetes Questionnaire [ADQ]-I), or conventional insulin injection (ADQ-C).

RESEARCH DESIGN AND METHODS

A total of 1,028 caregivers and 766 children and adolescents 2–17 years of age were recruited through the Danish Registry of Childhood Diabetes and completed the national web survey, including the ADQ and psychosocial measures of self-efficacy, parental support, family conflict, and aspects of diabetes-related quality of life. Blood samples were obtained for central HbA_1c analysis. The psychometric properties of the ADQ were evaluated, and the association with glycemic control was assessed.

RESULTS

There was good internal consistency for both the youth and caregiver reports and strong agreement between the caregiver and youth reports. Higher ADQ scores, indicating better adherence, were associated with better self-efficacy, more parental support, less diabetes-related conflict, and less experience with treatment barriers. Factor analysis supported maintaining the one-factor structure of the ADQ. Higher ADQ scores were associated with lower HbA_1c levels.

CONCLUSIONS

The ADQ showed good psychometric properties. Although the test-retest reliability and sensitivity to change of the instrument still need to be established, the ADQ appears to be a valuable tool for assessing adherence in families with children and adolescents with type 1 diabetes in both clinical and research settings.It has long been acknowledged that adherence plays an important role in the glycemic control of young patients with type 1 diabetes mellitus (1). Ongoing efforts are needed to ensure that the measures used to assess adherence behavior in patients reflect the ever-evolving diabetes treatment and thus the current guidelines to which patients are expected to adhere. Even so, the increasing complexity of modern diabetes treatment poses a challenge for many of the existing measures used for evaluating adherence (2). For example, only a few self-reported instruments, such as the Self-Management of Type 1 Diabetes in Adolescents (SMOD-A) (3) and the Diabetes Behavior Rating Scale (DBRS) (4), have been able to fully adapt to the widespread use of continuous subcutaneous insulin injection (CSII). On the other hand, these measures are quite extensive, making them less suitable for studies assessing multiple components related to diabetes care.Shorter adherence measures have been used in some studies (5–7), but none adequately encompass all necessary elements of adherence in relation to diabetes care, including questions about CSII, while maintaining strong internal consistency and relevance to glycemic control.The Diabetes Self-Management Profile (DSMP) is a widely used semistructured interview for the assessment of diabetes regimen adherence (4,8) that is both relatively short and sensitive to the use of insulin pumps. However, this instrument requires the use of trained personnel to administer and to score the measure, which makes it less appropriate for larger surveys.In order to conduct a national diabetes web survey in Danish children and adolescents with type 1 diabetes, we needed a short, self-reported adherence measure that was sensitive to different treatment regimens and applicable across a relatively wide pediatric age range. Accordingly, the Adherence in Diabetes Questionnaire (ADQ) was developed to assess components of adherence behavior in this population.This report describes the development, evaluation, and validation of the self-administered ADQ and provides results about how this new instrument correlates with psychosocial variables and glycemic control.     

Exploring the experiences of self-determination of individuals with mild intellectual disabilities and epilepsy

Background

While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear.

Method

We conducted semi-structured interviews with six adults (four men, two women) aged 30–61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis.

Results

Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control.

Conclusions

In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.     

A New Italian Questionnaire to Assess Caregivers of Cancer Patients' Satisfaction With Palliative Care: Multicenter Validation of the Post Mortem Questionnaire-Short Form

ContextCaregiver satisfaction with palliative care is a crucial indicator of its effectiveness. In light of the lack of validated or reliable Italian instruments, the Post Mortem Questionnaire-Short Form (QPM-SF), a self-report questionnaire, has been developed to assess home and inpatient hospice care.ObjectivesThe present study was designed to evaluate the psychometric properties of QPM-SF and assess for differences in quality of palliative care between hospice and home care settings.MethodsA total of 584 caregivers of terminal cancer patients completed QPM-SF one month after the death of the care recipient. To assess test-retest reliability, a subgroup of 50 caregivers completed the questionnaire a second time, one month later.ResultsQPM-SF showed good internal consistency and temporal stability and a four-factor structure: “Integrated home care,” “Hospice,” “Physical care-Information-Global evaluation,” and “Needs.”ConclusionQPM-SF may be considered a valid, reliable, and well-accepted self-report instrument for examining and implementing palliative care interventions.     

Health-related quality of life in adolescents at the time of diagnosis with osteosarcoma or acute myeloid leukemia

Although measuring health-related quality of life (HRQoL) in adolescents with cancer helps clinicians to personalize care for their patients, no previous studies have included HRQoL measurement at the time of diagnosis of osteosarcoma (OS) or acute myeloid leukemia (AML). The purpose of this study was to evaluate the feasibility of measuring adolescents' HRQoL at the time of their diagnosis of OS or AML, and to compare their ratings with those of their parents and of similarly diagnosed but younger patients aged 8–12 years. Participants included 126 patients (79 adolescents) and 130 parents (78 parents of adolescents); most completed the HRQoL instrument/s within 48 h of the first chemotherapy cycle. Ninety-three percent of adolescents diagnosed with OS and 93% of those diagnosed with AML completed the HRQoL instruments. Agreement between the adolescents and their parents ranged from 0.29 to 0.71 (OS) and 0.44 to 0.62 (AML). In all domains, OS adolescents had significantly lower PedsQL v.4.0 scores than adolescents with AML. Our findings demonstrates the feasibility of measuring HRQoL in adolescents with OS or AML (and their parents) at the time of diagnosis, and thus their HRQoL ratings can be used to inform their cancer care from diagnosis forward.