Providing a nurse-led complex nursing INtervention FOcused on quality of life assessment on advanced cancer patients: The INFO-QoL pilot trial.

PURPOSE Unmet needs for advanced-disease cancer patients are fatigue, pain, and emotional support. Little information is available about the feasibility of interventions focused on patient-reported outcome measurement developed according to the Medical Research Council (MRC) Framework in advanced-disease cancer patients. We aimed to pilot a nurse-led complex intervention focused on QoL assessment in advanced-disease cancer patients. METHODS The INFO-QoL study was based on an exploratory, nonequivalent comparison group, pre-test-post-test design. Study sites received either the INFO-QoL intervention or usual care. Adult advanced-disease cancer patients admitted to hospice inpatient units that gave their informed consent were included in the study. Subjects were 187 patients and their families and 19 healthcare professionals. We evaluated feasibility, acceptability, and patients' outcomes using the Integrated Palliative Care Outcome Scale. RESULTS Nineteen healthcare professionals were included. The mean competence score increased significantly over time (p < 0.001) and the mean usefulness score was high 8.63 (±1.36). In the post-test phase, 54 patients were allocated to the experimental unit and 36 in the comparison unit. Compared to the comparison unit, in the experimental unit anxiety (R2 = 0.07; 95% CI = -0.06; 0.19), family anxiety (R2 = 0.22; 95% CI = -0.03; 0.41), depression (R2 = 0.31; 95% CI = -0.05; 0.56) and sharing feelings (R2 = 0.09; 95% CI = -0.05; 0.23), were improved between pre-test and post-test phase. CONCLUSIONS The INFO-QoL was feasible and potentially improved psychological outcomes. Despite the high attrition rate, the INFO-QoL improved the quality and safety culture for patients in palliative care settings

Prevalence, severity and impacts of breathlessness in Indian adults: An exploratory, nationally representative, cross-sectional online survey

There are no known estimates of the prevalence, severity and impacts from breathlessness in low- and middle-income countries. This study aimed to explore the prevalence, severity, self-attributed underlying conditions and impacts of breathlessness limiting exertion in community-dwelling adults in India. This exploratory, population-based online survey recruited a pre-planned sample of 3,000 adult respondents stratified by age, sex and rurality (quotas as per the 2011 Indian National Census). Measures included: demographics; breathlessness limiting exertion (modified Medical Research [mMRC] scale); health-related quality of life (EQ-5D-5L); and disability (World Health Organisation’s Disability Assessment Schedule 2.0 12-item questionnaire [WHODAS-12]). Respondents (n = 3,046) had a mean age of 38 years (SD 15); 57% were male, 59% lived in rural areas and 33% had completed 12th grade. Breathlessness limiting exertion (mMRC ≥1) was reported by 44%, mostly attributed to poor nutrition (28%), lung conditions excluding tuberculosis (17%) or anaemia (13%). Compared to those without breathlessness, a higher proportion of people with breathlessness (mMRC ≥1) reported problems across all EQ-5D-5L dimensions. Most people reporting breathlessness (81%) indicated the symptom had adversely affected their normal activities. Disability scores (WHODAS-12 total and individual domains) increased as breathlessness worsened. To conclude, in India, conservative estimates indicate 626 million people live with breathlessness of whom 52 million people live with severe breathlessness. The symptom is associated with poorer health-related quality of life and marked disability, including reduced ability to perform daily activities

India Breathlessness Survey and 2011 Census of India Populations and variables used to create a sample weight.

India Breathlessness Survey and 2011 Census of India Populations and variables used to create a sample weight.</p

Impact of breathlessness measured on the modified Medical Research Council (mMRC ≥1; n = 1,351) on respondents’ everyday activities reported in an online survey for India [unweighted data].

Impact of breathlessness measured on the modified Medical Research Council (mMRC ≥1; n = 1,351) on respondents’ everyday activities reported in an online survey for India [unweighted data].</p

Mean (SD) and median (IQR) of the World Health Organisation Disability Assessment Schedule 2.0 12-item (WHODAS-12) and its individual domains and breathlessness measured on the modified Medical Research Council (mMRC) breathlessness scale for 3,046 respondents to an online survey in India [unweighted data].

Mean (SD) and median (IQR) of the World Health Organisation Disability Assessment Schedule 2.0 12-item (WHODAS-12) and its individual domains and breathlessness measured on the modified Medical Research Council (mMRC) breathlessness scale for 3,046 respondents to an online survey in India [unweighted data].</p

Proportion of moderate-to-extreme problems by quality of life (EQ-5D-5L) dimensions and level of breathlessness (modified Medical Research [mMRC] breathlessness scale) reported by 3,046 community-dwelling adults in an online survey for India [weighted data].

Proportion of moderate-to-extreme problems by quality of life (EQ-5D-5L) dimensions and level of breathlessness (modified Medical Research [mMRC] breathlessness scale) reported by 3,046 community-dwelling adults in an online survey for India [weighted data].</p

Quality of Life (EQ-5D-5L) by level of breathlessness (measured on the modified Medical Research Council [mMRC] breathlessness scale) for 3,046 respondents to an online survey in India [unweighted data].

Quality of Life (EQ-5D-5L) by level of breathlessness (measured on the modified Medical Research Council [mMRC] breathlessness scale) for 3,046 respondents to an online survey in India [unweighted data].</p

Characteristics of respondents (n = 3,046) by level of breathlessness measured on the modified Medical Research (mMRC) scale [weighted data].

Characteristics of respondents (n = 3,046) by level of breathlessness measured on the modified Medical Research (mMRC) scale [weighted data].</p

Mean disability scores with 95% CIs for WHODAS-12 individual domains and level of breathlessness (modified Medical Research Council [mMRC] breathlessness scale) reported by 3,046 community-dwelling adults in an online survey for India [weighted data].

Mean disability scores with 95% CIs for WHODAS-12 individual domains and level of breathlessness (modified Medical Research Council [mMRC] breathlessness scale) reported by 3,046 community-dwelling adults in an online survey for India [weighted data].</p

Inclusivity in global research form.

There are no known estimates of the prevalence, severity and impacts from breathlessness in low- and middle-income countries. This study aimed to explore the prevalence, severity, self-attributed underlying conditions and impacts of breathlessness limiting exertion in community-dwelling adults in India. This exploratory, population-based online survey recruited a pre-planned sample of 3,000 adult respondents stratified by age, sex and rurality (quotas as per the 2011 Indian National Census). Measures included: demographics; breathlessness limiting exertion (modified Medical Research [mMRC] scale); health-related quality of life (EQ-5D-5L); and disability (World Health Organisation’s Disability Assessment Schedule 2.0 12-item questionnaire [WHODAS-12]). Respondents (n = 3,046) had a mean age of 38 years (SD 15); 57% were male, 59% lived in rural areas and 33% had completed 12th grade. Breathlessness limiting exertion (mMRC ≥1) was reported by 44%, mostly attributed to poor nutrition (28%), lung conditions excluding tuberculosis (17%) or anaemia (13%). Compared to those without breathlessness, a higher proportion of people with breathlessness (mMRC ≥1) reported problems across all EQ-5D-5L dimensions. Most people reporting breathlessness (81%) indicated the symptom had adversely affected their normal activities. Disability scores (WHODAS-12 total and individual domains) increased as breathlessness worsened. To conclude, in India, conservative estimates indicate 626 million people live with breathlessness of whom 52 million people live with severe breathlessness. The symptom is associated with poorer health-related quality of life and marked disability, including reduced ability to perform daily activities.</div