Development of the EORTC QLQ-CAX24, a questionnaire for cancer patients with cachexia

Context Cachexia is commonly found in cancer patients and has profound consequences; yet there is only one questionnaire that examines the patient's perspective. Objective To report a rigorously developed module for patient self-reported impact of cancer cachexia. Methods Module development followed published guidelines. Patients from across the cancer cachexia trajectory were included. In Phase 1, health-related quality of life (HRQOL) issues were generated from a literature review and interviews with patients in four countries. The issues were revised based on patient and health care professional (HCP) input. In Phase 2, questionnaire items were formulated and translated into the languages required for Phase 3, the pilot phase, in which patients from eight countries scored the relevance and importance of each item, and provided qualitative feedback. Results A total of 39 patients and 12 HCPs took part in Phase 1. The literature review produced 68 HRQOL issues, with 22 new issues arising from the patient interviews. After patient and HCP input, 44 issues were formulated into questionnaire items in Phase 2. One hundred ten patients took part in Phase 3. One item was reworded, and 20 items were deleted as a consequence of patient feedback. Conclusions The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment in clinical trials and practice. It contains five multi-item scales (food aversion, eating and weight-loss worry, eating difficulties, loss of control, and physical decline) and four single items

Determinants of patient satisfaction in ambulatory oncology: a cross sectional study based on the OUT-PATSAT35 questionnaire

<p>Abstract</p> <p>Background</p> <p>The aim of this study was to identify factors associated with satisfaction with care in cancer patients undergoing ambulatory treatment. We investigated associations between patients' baseline clinical and socio-demographic characteristics, as well as self-reported quality of life, and satisfaction with care.</p> <p>Methods</p> <p>Patients undergoing ambulatory chemotherapy or radiotherapy in 2 centres in France were invited, at the beginning of their treatment, to complete the OUT-PATSAT35, a 35 item and 13 scale questionnaire evaluating perception of doctors, nurses and aspects of care organisation. Additionally, for each patient, socio-demographic variables, clinical characteristics and self-reported quality of life using the EORTC QLQ-C30 questionnaire were recorded.</p> <p>Results</p> <p>Among 692 patients included between January 2005 and December 2006, only 6 were non-responders. By multivariate analysis, poor perceived global health strongly predicted dissatisfaction with care (<it>p </it>< 0.0001). Patients treated by radiotherapy (vs patients treated by chemotherapy) reported lower levels of satisfaction with doctors' technical and interpersonal skills, information provided by caregivers, and waiting times. Patients with primary head and neck cancer (vs other localisations), and those living alone were less satisfied with information provided by doctors, and younger patients (< 55 years) were less satisfied with doctors' availability.</p> <p>Conclusions</p> <p>A number of clinical of socio-demographic factors were significantly associated with different scales of the satisfaction questionnaire. However, the main determinant was the patient's global health status, underlining the importance of measuring and adjusting for self-perceived health status when evaluating satisfaction. Further analyses are currently ongoing to determine the responsiveness of the OUT-PATSAT35 questionnaire to changes over time.</p

Developing Symptom Lists for People with Cancer Treated with Targeted Therapies

Background: Targeted Therapies (TTs) have revolutionised cancer treatment with their enhanced specificity of action. Compared with conventional therapies, TTs are delivered over a longer period and often have unusual symptom profiles. Patient reported outcome measures such as symptom side-effect lists need to be developed in a time-efficient manner to enable a rapid and full evaluation of new treatments and effective clinical managementObjective: the aim of this study is to develop a set of TT-related symptoms and identify the optimal method for developing symptom lists. Patients and Methods: symptoms from TT treatment in the context of Chronic Myeloid Leukaemia (CML), HER2 positive breast cancer, or Gastrointestinal Stromal Tumours (GIST) were identified through literature reviews, interviews with health care professionals (HCPs) and patients, and patient focus groups. The symptom set was then pilot tested in patients across the three cancer diagnoses: The number of items derived from each source (literature, patients, or HCPs) were compared. Results: a total of 316 patients and 86 HCPs from 16 countries participated. An initial set of 209 symptoms was reduced to 61 covering 12 symptom categories. Patient interviews made the greatest contribution to the item set.Conclusions: symptom lists should be created based on input from patients. The item set described will be applicable to the assessment of new TTs, and in monitoring treatment.<br/

Gynecologic oncology patients' satisfaction and symptom severity during palliative chemotherapy

BACKGROUND: Research on quality and satisfaction with care during palliative chemotherapy in oncology patients has been limited. The objective was to assess the association between patient's satisfaction with care and symptom severity and to evaluate test-retest of a satisfaction survey in this study population. METHODS: A prospective cohort of patients with recurrent gynecologic malignancies receiving chemotherapy were enrolled after a diagnosis of recurrent cancer. Patients completed the Quality of End-of-Life care and satisfaction with treatment scale (QUEST) once upon enrollment in an outpatient setting and again a week later. Patients also completed the Mini-Mental Status Exam, the Hospital Anxiety/Depression Scale, a symptom severity scale and a demographic survey. Student's t-test, correlation statistics and percent agreement were used for analysis. RESULTS: Data from 39 patients were analyzed. Mean (SD) quality of care summary score was 41.95 (2.75) for physicians and 42.23 (5.42) for nurses (maximum score was 45; p = 0.76 for difference in score between providers). Mean (SD) satisfaction of care summary score was 29.03 (1.92) for physicians and 29.28 (1.70) for nurses (maximum score was 30; p = 0.49 for difference between providers). Test-retest for 33 patients who completed both QUEST surveys had high percent agreement (74–100%), with the exception of the question regarding the provider arriving late (45 and 53%). There was no correlation between quality and satisfaction of care and symptom severity. Weakness was the most common symptom reported. Symptom severity correlated with depression (r = 0.577 p < 0.01). There was a trend towards a larger proportion of patients reporting pain who had three or more prior chemotherapy regimens (p = 0.075). Prior number of chemotherapy regimens or time since diagnosis was not correlated with symptom severity score. Anxiety and depression were correlated with each other (r = 0.711, p < 0.01). There was no difference in symptom severity score at enrollment between those patients who have since died (n = 19) versus those who are still alive. CONCLUSION: The QUEST Survey has test-retest reliability when used as a written instrument in an outpatient setting. However, there was no correlation between this measure and symptom severity. Patient evaluation of care may be more closely related to the interpersonal aspects of the health care provider relationship than it is to physical symptoms

La comunicación entre el paciente oncológico y los profesionales. El cuestionario de comunicación de la EORTC

The aims of the present work are to introduce to the field of communication between the cancer patient and the professionals, to remark the positive influence communication may have on the patient, and to present the EORTC communication questionnaire. Communication between patient and professional is a key element in the support that is offered to cancer patients. It is important to consider different professionals communicate with cancer patients. There is a need of research in communication between patients and professionals. Two main models of patient care are presented: Paternalistic and Patient-Centered Cancer Care. Patient-Centered Care includes Patient- Centered Communication - PCC. The relation between communication and other PROs - Quality of Life, Information and Satisfaction with Care - is presented. There are cross-cultural differences in communication that could be related to the model of patient care. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group is developing a questionnaire to assess communication between cancer patient and the professionals. This Communication questionnaire mainly assesses professionals’ behaviors. Cultural aspects have a key role in the development of the EORTC questionnaire. This instrument is based on the Patient- Centered Communication – PCC model. The EORTC QLQ-COMU26 is presented. It includes six scales and four individual items. The three phases of the questionnaire development process are described. At the present moment the EORTC QLQ-COMU26 is being field-tested in a larger international study (phase IV), to ensure it is an appropriate and psychometrically valid instrument.Este trabajo pretende introducir el área de la comunicación entre el paciente oncológico y los profesionales, y destacar el impacto que tiene en el paciente. Además, se presenta el cuestionario de comunicación de la EORTC. La comunicación entre el paciente y los profesionales es uno de los elementos claves del soporte que se ofrece a dichos pacientes. En dicha comunicación participan un rango importante de profesionales. Hay una necesidad de realizar más investigación sobre la comunicación. Se presentan dos modelos principales de atención al paciente: el Paternalista y el de Atención Centrada en el Paciente con cáncer. Este último lleva asociada la Comunicación Centrada en el Paciente - CCP. Se revisa la relación entre comunicación y otros PRO: Calidad de Vida, información, y Satisfacción con los Cuidados. Existen diferencias culturales en comunicación que pueden estar relacionadas con el modelo de atención al paciente. El Grupo de Calidad de Vida de la Organización Europea para la Investigación y Tratamiento del Cáncer-EORTC está desarrollando una escala de comunicación entre el paciente oncológico y los profesionales. La mayoría del contenido de dicho cuestionario se centra en las conductas de los profesionales. Los aspectos culturales tienen un papel fundamental en el desarrollo del instrumento. El cuestionario se basa en el modelo de Comunicación Centrada en el Paciente – CCP. Se presenta el cuestionario EORTC QLQ-COMU26, que consta de seis escalas y cuatro ítems individuales. Se describen las tres primeras fases que se han dado en su creación. En la actualidad su funcionamiento psicométrico se está valorando en un estudio internacional

Impact of a hospital improvement initiative in Bangladesh on patient experiences and satisfaction with services: two cross-sectional studies

<p>Abstract</p> <p>Background</p> <p>The Bangladesh government implemented a pilot Hospital Improvement Initiative (HII) in five hospitals in Sylhet division between 1998 and 2003. This included management and behaviour change training for staff, waste disposal and procurement, and referral arrangements. Two linked cross-sectional surveys in 2000 and 2003 assessed the impact of the HII, assessing both patients' experience and satisfaction and public views and use of the hospitals.</p> <p>Methods</p> <p>In each survey we asked 300 consecutive outpatients and a stratified random sample of 300 inpatients in the five hospitals about waiting and consultation time, use of an agent for admission, and satisfaction with privacy, cleanliness, and staff behaviour. The field teams observed cleanliness and privacy arrangements, and visited a sample of households in communities near the hospitals to ask about their opinions and use of the hospital services. Analysis examined changes over time in patients' experience and views. Multivariate analysis took account of other variables potentially associated with the outcomes. Survey managers discussed the survey findings with gender stratified focus groups in each sample community.</p> <p>Results</p> <p>Compared with 2000, an outpatient in three of the hospitals in 2003 was more likely to be seen within 10 minutes and for at least five minutes by the doctor, but outpatients were less likely to report receiving all the prescribed medicines from the hospital. In 2003, inpatients were more likely to have secured admission without using an agent. Although patients’ satisfaction with several aspects of care improved, most changes were not statistically significant. Households in 2003 were significantly more likely to rate the hospitals as good than in 2000. Use of the hospitals did not change, except that more households used the medical college hospital for inpatient care in 2003. Focus groups confirmed criticisms of services and suggested improvements.</p> <p>Conclusion</p> <p>Improvements in some aspects of patients' experience may have been due to the programme, but the decreased availability of medicines in government facilities across the country over the period also occurred in these hospitals. Monitoring patients’ experience and satisfaction as well as public views and use of hospital services is feasible and useful for assessing service interventions.</p

Stepped care targeting psychological distress in head and neck and lung cancer patients: a randomized clinical trial

<p>Abstract</p> <p>Background</p> <p>Psychological distress is common in cancer survivors. Although there is some evidence on effectiveness of psychosocial care in distressed cancer patients, referral rate is low. Lack of adequate screening instruments in oncology settings and insufficient availability of traditional models of psychosocial care are the main barriers. A stepped care approach has the potential to improve the efficiency of psychosocial care. The aim of the study described herein is to evaluate efficacy of a stepped care strategy targeting psychological distress in cancer survivors.</p> <p>Methods/design</p> <p>The study is designed as a randomized clinical trial with 2 treatment arms: a stepped care intervention programme versus care as usual. Patients treated for head and neck cancer (HNC) or lung cancer (LC) are screened for distress using OncoQuest, a computerized touchscreen system. After stratification for tumour (HNC vs. LC) and stage (stage I/II vs. III/IV), 176 distressed patients are randomly assigned to the intervention or control group. Patients in the intervention group will follow a stepped care model with 4 evidence based steps: 1. Watchful waiting, 2. Guided self-help via Internet or a booklet, 3. Problem Solving Treatment administered by a specialized nurse, and 4. Specialized psychological intervention or antidepressant medication. In the control group, patients receive care as usual which most often is a single interview or referral to specialized intervention. Primary outcome is the Hospital Anxiety and Depression Scale (HADS). Secondary outcome measures are a clinical level of depression or anxiety (CIDI), quality of life (EQ-5D, EORTC QLQ-C30, QLQ-HN35, QLQ-LC13), patient satisfaction with care (EORTC QLQ-PATSAT), and costs (health care utilization and work loss (TIC-P and PRODISQ modules)). Outcomes are evaluated before and after intervention and at 3, 6, 9 and 12 months after intervention.</p> <p>Discussion</p> <p>Stepped care is a system of delivering and monitoring treatments, such that effective, yet least resource-intensive, treatment is delivered to patients first. The main aim of a stepped care approach is to simplify the patient pathway, provide access to more patients and to improve patient well-being and cost reduction by directing, where appropriate, patients to low cost (self-)management before high cost specialist services.</p> <p>Trial registration</p> <p>NTR1868</p

The development of a satisfaction with care questionnaire for cancer patients :a european validation study

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Preservation of wellbeing in cancer patients: role of quality of life and satisfaction with care assessments

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