Specialty: Primary Care, Primary sub-specialty: Cancer
Conditions
Interventions
Participants are asked to complete five study questionnaires about their health and wellbeing. Participants are asked to nominate a carer to join the study if they have one. Carers are requested to co
Sponsors
University of Hull
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Patient level: 1. Adults (aged 18 and above) 2. Diagnosis of active incurable cancer 3. Willing to have a consultation with a practice clinician 4. Able to complete study measures 5. Written or observed verbal informed consent Carers: 1. Adults (aged 18 and above) 2. Nominated by the patient 3. Able to complete study measures 4. Written or observed verbal informed consent
Exclusion criteria
Exclusion criteria: Patient level: 1. Patients in complete remission 2. Patients receiving treatment with intent to cure (patients receiving anti-cancer treatments with the intention to palliate, OR receiving supportive care only will be eligible). 3. Patients living in a care home or other institutional setting 4. Patients who do not speak English well enough to provide informed consent and complete study measures. 5. Known to have a co-morbid condition which means they lack sufficient mental capacity to provide informed consent in the opinion of the clinician (e.g. dementia) 6. Have known of their diagnosis for less than one month Carer level: 1. Carers who do not speak English well enough to provide informed consent and complete study measures. 2. Paid carers
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Recruitment is assessed by calculating the number of GP practices recruited, number of patients screened, eligible, contacted by usual care team, agreeing to researcher contact, and registered per practice, rate of patients (and caregivers) recruited across the feasibility sites over six months 2. Uptake and delivery is assessed by calculating the uptake of the NAT:PD-C, the expected number of completed NAT:PD-C forms completed per patient vs actual will be assessed, total patients by trial arm seen by a NAT:PD-C trained clinician and had a NAT:PD-C completed for that consultation, time from baseline to needs assessment appointment, length of appointments at six months 3. Data collection and quality: Participant reported questionnaire completion rates, amount/pattern of missing data and sub-scales of the proposed primary outcome measure the SCNS, patient/carer outcomes i.e. unmet needs, ability to care, quality of life, performance at six months | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Patients’ supportive care needs are measured measured using the Supportive Care Needs Survey (SCNS-SF34) at baseline, one, three and six months. 2. Patients’ symptom burden is measured using the Edmonton Symptom Assessment System (ESAS-R) at baseline, one, three and six months 3. Patients’ health status is measured using EORTC QLQ-C15-PAL at baseline, one, three and six 4. Patients’ use of health care services and personal expenses is measured using Resource Use Questionnaire (RUQ) at one, three and six 5. Patients’ co-morbidities are measured using Charlson Co-morbidity Index (CCI) at baseline 6. Patients’ performance status is measured using Australian Modified Karnofsky Scale (AMKS) at baseline, one, three and six 7. Patients’ wellbeing is measured using ICECAP Supportive Care Measure (ICECAP-SCM) at baseline, one, three and six 8. Patients’ health status is measured using EQ-5D-5L at baseline, one, three and six 9. Carers’ support needs are measured using Carer Support Needs Assessment Tool (CSNAT) at baseline, one, three and six 10. Carers’ experience of caring is measured using the Carer Experience Scale (CES) at baseline, one, three and six 11. Patient/carer need is measured using the Needs Assessment Tool Progressive Disease Cancer (NAT:PD-C) post-baseline | — |
Countries
England, United Kingdom
Contacts
Public ContactJoseph Clark
Outcome results
None listed