Health-related Quality of Life in Patients with Brain Tumors: Limitations and Additional Outcome Measures

Dirven, Linda; Reijneveld, J.C.; Aaronson, Neil K.; Bottomley, Andrew; Uitdehaag, Bernard M. J.; Taphoorn, Martin J.B.

doi:10.1007/s11910-013-0359-y

Cited by 39 publications

(32 citation statements)

References 91 publications

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“…Several methodological issues may hamper the interpretation of HRQoL data[49], including the timing of the assessments, selection bias, response shift, and missing data. These methodological limitations should be kept in mind when interpreting HRQoL scores derived from clinical trials or from an individual patient in clinical practice.…”

Section: Considerations and Conclusionmentioning

confidence: 99%

Health-related quality of life in high-grade glioma patients

Dirven¹,

Aaronson²,

Heimans³

et al. 2014

Chin J Cancer

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Gliomas are malignant primary brain tumors and yet incurable. Palliation and the maintenance or improvement of the patient's quality of life is therefore of main importance. For that reason, health-related quality of life (HRQoL) has become an important outcome measure in clinical trials, next to traditional outcome measures such as overall and progression-free survivals, and radiological response to treatment. HRQoL is a multidimensional concept covering physical, psychological, and social domains, as well as symptoms induced by the disease and its treatment. HRQoL is assessed by using self-reported, validated questionnaires. Various generic HRQoL questionnaires, which can be supplemented with a brain tumor- specific module, are available. Both the tumor and its treatment can have a negative effect on HRQoL. However, treatment with surgery, radiotherapy, chemotherapy, and supportive treatment may also improve patients' HRQoL, in addition to extending survival. It is expected that the impact of HRQoL measurements in both clinical trials and clinical practice will increase. Hence, it is important that HRQoL data are collected, analyzed, and interpreted correctly. Methodological issues such as selection bias and missing data may hamper the interpretation of HRQoL data and should therefore be accounted. In clinical trials, HRQoL can be used to assess the benefits of a new treatment strategy, which should be weighed carefully against the adverse effects of that treatment. In daily clinical practice, HRQoL assessments of an individual patient can be used to inform physicians about the impact of a specific treatment strategy, and it may facilitate the communication between the physicians and the patients.

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Section: Considerations and Conclusionmentioning

confidence: 99%

Health-related quality of life in high-grade glioma patients

Dirven¹,

Aaronson²,

Heimans³

et al. 2014

Chin J Cancer

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“…Therefore, the problems the patients indicated may not completely reflect those of the ‘whole’ glioma population. Secondly, a selection bias could have been introduced by including the more healthy patients in this study [22]; patients with, for example, severe cognitive impairments, psychological distress or declined physical conditions often not participate [20]. Indeed, the majority of the patients in this study had stable disease.…”

Section: Discussionmentioning

confidence: 99%

Development of a questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumors: a pilot study

et al. 2017

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Both dementia and brain tumor patients exhibit cognitive decline during the course of their disease. They might therefore experience similar problems with cognitively complex daily activities (i.e., instrumental activities of daily living (IADL)). The study's objective is to evaluate if the Amsterdam IADL Questionnaire© (A-IADL-Q), a 70-item IADL questionnaire developed for and validated in early dementia patients, is also applicable to glioma patients. The evaluation consisted of three steps. Predetermined decision rules defined which activities were retained, altered, added or excluded. In the first step, 6 neuro-oncology health care professionals (HCP) and 10 glioma patient-proxy dyads were asked to evaluate the 70 A-IADL-Q activities. In the second step, in-depth interviews were conducted with 6 HCPs and 6 other patient-proxy dyads to generate relevant activities specific to glioma patients not covered by the A-IADL-Q. In the third step, 6 new patient-proxy dyads were cognitively debriefed with the list of activities constructed in the previous steps. Results indicated that in step 1, after alterations and exclusions, 28/70 activities could be retained. Nine newly generated activities were subsequently added in step 2. In step 3, the 37 activities were presented to the patient-proxy dyads. Based on their input, several additional alterations and exclusions were made resulting in a list of 32 activities. In conclusion, this evaluation of the A-IADL-Q showed that dementia-specific IADL activities are only partly applicable to glioma patients, and that the addition of glioma specific IADL activities is necessary to capture the IADL construct. This underlines the need for a disease-specific IADL questionnaire for brain tumor patients.

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“…However, there are a plethora of other PRO measures available for use, including those that focus on single symptoms such as fatigue, domains such as mood, or the impact of disease on function. As a consequence of the neurologic and cognitive symptoms associated with primary brain tumors throughout the disease, the impact of the disease and treatment on everyday functioning may represent additional measures that would be beneficial to assess in this patient population [29]. Instrumental activities of daily living (IADLs) also include those that are important for functioning in society independently [29].…”

Section: Additional Pro Instrumentsmentioning

confidence: 99%

“…As a consequence of the neurologic and cognitive symptoms associated with primary brain tumors throughout the disease, the impact of the disease and treatment on everyday functioning may represent additional measures that would be beneficial to assess in this patient population [29]. Instrumental activities of daily living (IADLs) also include those that are important for functioning in society independently [29]. Functional and IADL measures have been successfully developed in other neurologic diseases, such as dementia to help put the impact of disease into functional context [30], and efforts to create a standardized approach allowing for physician proxy rating of function when the patients are unable to adequately participate are currently being developed.…”

Section: Additional Pro Instrumentsmentioning

confidence: 99%

Patient Reported Endpoints for Measuring Clinical Benefit in (High Grade Glioma) Primary Brain Tumor Patients

Armstrong

Gilbert²

2014

Curr. Treat. Options in Oncol.

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Symptom occurrence impacts primary brain tumor patients from the time of diagnosis and often heralds recurrence. In addition, the therapy can also result in symptoms that may compound tumor-associated symptoms, further impacting the patient's function and overall quality of life. There is increasing recognition that clinical studies evaluating tumor response using only measures of tumor size on imaging or survival are inadequate in brain tumor patients. Many symptoms can only be assessed from the patient, and patient reported outcome measures have been developed and have adequate reliability and validity. These measures are beginning to be incorporated into clinical trials. Guidelines on their use and meaning are needed to standardize assessment across trials and facilitate measurement of clinical benefit.

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Health-related Quality of Life in Patients with Brain Tumors: Limitations and Additional Outcome Measures

Cited by 39 publications

References 91 publications

Health-related quality of life in high-grade glioma patients

Health-related quality of life in high-grade glioma patients

Development of a questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumors: a pilot study

Patient Reported Endpoints for Measuring Clinical Benefit in (High Grade Glioma) Primary Brain Tumor Patients

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