Development and validation of a questionnaire to measure preferences and expectations of patients undergoing palliative chemotherapy: EXPECT questionnaire

Patil, VijayM; Chakraborty, Santam; Jithin, T.K.; Dessai, Sampada; Babu, T P S; Raghavan, Vineetha; Geetha, M.; Kumar, T Shiva; Biji, M S; Bhattacharjee, Atanu; Nair, Chandran K.

doi:10.4103/0019-509x.197735

Cited by 3 publications

(2 citation statements)

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“…From the methodological point of view, several questionnaires have been developed in the past years to measure patients' expectations regarding healthcare services, treatment choices, or outcomes [10][11][12][13][14][15][16]. However, these are mainly disease-specific or focus on specific needs and hence cannot be used in studies of the general population.…”

Section: Introductionmentioning

confidence: 99%

Subjective expectations regarding ageing: a cross-sectional online population survey in Hungary

et al. 2019

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Background We aimed to investigate individuals' subjective expectations regarding health and happiness alongside their provisions on life circumstances for older ages. Methods A cross-sectional online survey was performed involving a representative sample (N = 1000; mean age 50.9, SD = 15.4; female 54.5%) in Hungary. Subjective expectations on health status (EQ-5D-3L/-5L, GALI, WHO-5), happiness (0-10 VAS), employment status, care time, and forms of care for ages 60, 70, 80, and 90 were surveyed. Results Current mean EQ-5D-5L was 0.869 (SD = 0.164) and happiness was 6.7 (SD = 2.4). Subjective life expectancy was 80.9 (SD = 11.1), and median expected retirement age was 65. Mean expected EQ-5D-5L for ages 60/70/80/90 was 0.761/0.684/0.554/0.402, and no activity limitations (GALI) were expected by 64%/40%/18%/14%, respectively. Expected happiness score was 6.8/6.7/6.2/5.7, and a decrease in mental well-being (WHO-5) was provisioned. A substantial increase in drug expenses and care time was anticipated, but only 52% thought to have extra income besides pension. The great majority expected to be helped by the family (77%/72%/53%/40%) if needed. Educational level, GALI, and longevity expectations were significant predictors of EQ-5D-5L expectations using a standard 5% significance level of decision. Current happiness was major determinant of expected future happiness. Conclusions Individuals expect a significant deterioration of health with age but only a moderate decrease in happiness. Overestimation of future activity limitations suggests a gap between statistical and subjective healthy life expectancy. The majority expects to rely on informal care in the elderly. Raise in retirement age is underestimated. Our results can be used as inputs for economic modelling of labor force participation and ageing.

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Section: Introductionmentioning

confidence: 99%

Subjective expectations regarding ageing: a cross-sectional online population survey in Hungary

et al. 2019

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“…The expectation and preferences were captured using The EXPECT questionnaire. EXPECT proforma was designed by the VP and has been validated and used for capturing expectation and preferences regarding systemic therapy [1,7]. The details about the questionnaire and its method of use are already published.…”

Section: Proforma and Its Validationmentioning

confidence: 99%

Expectation and Preferences with Palliative Systemic Therapy in Recurrent Gliomas

Kalra¹,

Simha²,

S³

et al. 2019

Neurooncol Open Access

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Background: Expectation and preferences of recurrent glioma patients are rarely captured and hence are ill reported in literature. To overcome the above-mentioned deficiency, we undertook a study to capture the expectation and preferences of recurrent glioma patients. Methods:This was cross-sectional study, with the expectation and preferences, of 40 recurrent glioma patients were captured at a single visit post counseling about the disease prognosis and treatment options. SPSS version 16 and RStudio version 3.4.2 was used for analysis and descriptive statistics was performed.Results: Prolongation of life as alone or in combination with symptom control was the primary expectation in 90% of patients (n=36, 95% CI 76.2-96.5). The median time patients preferred to devote out of the remaining life span for home, work and hospital were 60% (IQR 60-90), 32.5% (IQR 1.25-50) and 0% (IQR 0-10) respectively. The adverse event most feared by patients and hence not preferred were skin rash (7, 17.5%), numbness (7, 17.5%) and vomiting (6, 15%). Majority of patients (67.5%, 27) were willing to trade off a survival of >4 months for a cheaper regimen if necessitated. Ninety-five (38) percent of patients were willing to participate in the research protocols if they are available. Conclusion:Prolongation of life either alone or along with symptom control is the primary expectation from systemic therapy of recurrent glioma patients.

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Pilot testing and vernacular translation of a questionnaire for assessment of satisfaction in patients on radiotherapy in India

et al. 2021

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Development and validation of a questionnaire to measure preferences and expectations of patients undergoing palliative chemotherapy: EXPECT questionnaire

Abstract: EXPECT questionnaire was validated in the regional language, and it's an effective tool for capturing patient's preferences and expectation from chemotherapy.

Cited by 3 publications

References 23 publications

Subjective expectations regarding ageing: a cross-sectional online population survey in Hungary

Subjective expectations regarding ageing: a cross-sectional online population survey in Hungary

Expectation and Preferences with Palliative Systemic Therapy in Recurrent Gliomas

Pilot testing and vernacular translation of a questionnaire for assessment of satisfaction in patients on radiotherapy in India

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