Chronic lung disease Respiratory
Conditions
Interventions
Face-to-face training to be delivered by palliative care physicians from University of Cape Town using the curriculum used to train palliative care professionals at the University of Cape Town
Sponsors
National Institute for Health Research
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Patients: 1. Adults (aged at least 18 years) attending primary care with diagnosed COPD or chronic lung disease (CLD) on the basis of the likely aetiological determinants in South Africa, namely cigarette or other smoking history, biomass fuel smoke exposure, history of previous pulmonary tuberculosis or other respiratory infections and occupational dust exposure 2. Eligible for palliative care on the basis of disease severity, with at least one of the following: 2.1.Breathless at rest or on minimal exertion 2.2. On home oxygen 2.3. Three or more hospital admissions in the last year 2.4. More than three emergency centre (EC) visits in the last month 2.5. Karnofsky Performance Status of 50 or less 2.6. Dependence on others for activities of daily living (ADLs) 3. Able to communicate in English, Afrikaans or Xhosa 4. Able to give informed consent Family members/caregivers: 1. Primary caregiver to be identified by the patient, in line with the definition of caregiver: "Unpaid, informal providers of one or more physical, social, practical and emotional tasks. In terms of their relationship to the patient, they may be a friend, partner, ex-partner, sibling, parent, child or other blood or non-blood relative." 2. Adult aged at least 18 years 3. Able to communicate in English, Afrikaans or Xhosa 4. Able to give informed consent
Exclusion criteria
Exclusion criteria: Patients: 1. Housebound and unable to attend primary care 2. Unable to give informed consent due to loss of capacity 3. Unable to communicate in English, Afrikaans or Xhosa 4. Asthma Caregivers: 1. Paid caregivers such as nurses or social workers 2. Aged under 18 years 3. Not involved in day-to-day care for the COPD or CLD patient
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Number of patients who meet inclusion criteria recorded using study records during the recruitment period 2. Number of patients approached recorded using study records during the recruitment period 3. Number of patients who consent to study entry and data collection recorded using study records during the recruitment period 4. Time taken to recruit planned feasibility sample recorded using study records during the recruitment period 5. Number of recruited patients who have a family member who consents to data collection recorded using study records during the recruitment period 6. Number of patients able to self-report at each time point recorded using study records during the data collection period 7. Reasons for loss to follow-up recorded using study records during the data collection period 8. Number of patients who die within data collection period recorded using study records during the data collection period 9. Place of death recorded using study records during the data collection period 10. Number of participants who complete each data point recorded using study records during the data collection period 11. Unrelieved patient symptoms assessed using a subscale of the Integrated Palliative Care Outcome Scale (IPOS) at monthly intervals during the data collection period 10. Patient depression risk assessed using the Centre for Epidemiologic Studies Depression Scale (CES-D) at monthly intervals during the data collection period 11. Emergency hospital or clinic visits for dyspnoea relief recorded using the Client Services Receipt Inventory (CSRI) and patient diaries at monthly intervals | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Time to complete person-reported outcome measures (researcher read aloud and record response) recorded using study records during the data collection period 2. Number of measures completed at each data point recorded using study records during the recruitment period 3. Number of patient records/files with person-centred care plans recorded using patient medical records during the data collection period 4. Number of observations made recorded using study records during the data collection period 5. Number of health care professionals delivering care in line with the training received assessed by comparing names of care providers in patient medical records with recorded documentation on person-centred care plans. The research team will also engage a mentor who will provide mentorship and support to all health care professionals. The mentor will also observe and record the care delivered by health care professionals throughout the study period. 6. Number who received patient-centred care or care in line with the intervention or training provided to clinicians recorded using patient medical records during the data collection period 7. Multidimensional problems and concerns of the patients and families over the previous 3 days assessed using the 10-item African Palliative Care Association (APCA) African Palliative Outcome Scale (APOS) at each monthly visit during the intervention and control periods 8. Patient depression assessed using the Center for Epidemiologic Studies Depression Scale (CES-D) at the first assessment during the control period and 6-8 weeks after the start of the intervention 9. Health status assessed using the COPD Assessment Test (CAT) 10. Patient's assessment of their condition and healthcare experience assessed using the Picker Patient Experience questionnaire (PPE-15) at monthly intervals throughout the | — |
Countries
South Africa
Outcome results
None listed