Introduction
Materials and methods
Development of indicators
Questionnaire
Practice test
Number | Percentage (range) | |
---|---|---|
Teaching hospital | 4 | 67 |
Hospital beds, mean (range) | 630 | (200–960) |
Lung cancer patients (NSCLC) seen per year, mean (range) | 100 | (30–160) |
Availability of a multidisciplinary team for lung cancer | 2 | 33 |
Specialised nurse with coordination tasks | 1 | 17 |
Results
Development of indicators
Practice test
Study population
Response (n = 100) [n (%)] | Non-response (n = 32) [n (%)] | |
---|---|---|
Mean age in years | 66 | 68 |
Men | 65 (66) | 19 (60) |
Disease stage IV | 23 (24) | 9 (32) |
Other cancer 5 years or longer ago | 9 (9) | 6 (18) |
Psychometric characteristics: room for improvement
Psychometric characteristics: applicability
Psychometric characteristics: discriminating capacity
Psychometric characteristics: reliability
Oncoline (n = 14) | AHRQ (n = 36) | NICE (n = 11) | Total (n = 61) | |||||
---|---|---|---|---|---|---|---|---|
n
| % |
n
| % |
n
| % |
n
| % | |
1. Access to care | 1 | 7 | 2 | 6 | 5 | 45 | 8 | 13 |
2. Follow-up | 12 | 86 | 13 | 36 | 6 | 55 | 23 | 38 |
3. Communication and respect | 2 | 14 | 6 | 17 | 2 | 18 | 10 | 16 |
4. Patient and family involvement | 2 | 14 | 4 | 11 | 2 | 18 | 8 | 13 |
5. Information | 4 | 29 | 5 | 14 | 6 | 55 | 15 | 25 |
6. Coordination | ||||||||
Specialists/multidisciplinary patient care team | 4 | 29 | 5 | 14 | 9 | 82 | 18 | 30 |
Oncology nurse with case management tasks | 2 | 14 | 5 | 14 | 6 | 55 | 13 | 21 |
Paramedical support | 3 | 21 | 3 | 27 | 6 | 10 | ||
7. Physical support (pain, nausea, etc.) | 3 | 21 | 4 | 11 | 5 | 50 | 12 | 20 |
8. Emotional and psychosocial support | 9 | 64 | 6 | 17 | 6 | 55 | 21 | 34 |
Domains of patient-centred cancer care (total n = 100) | Score (%) | Room for improvement (%) | Applicability (%) | Range (%) |
---|---|---|---|---|
1. Access (mean score, 68%) | ||||
Waiting time first visit lung specialist <5 days | 49 | 51 | 100 | 42–56 |
Waiting time start first treatment from first visit specialist <35 daysa
| 62 | 38 | 100 | 40–80 |
Waiting time diagnostic procedures from first visit specialist <21 daysa
| 71 | 29 | 100 | 50–89 |
Waiting time general practitioner <2 days | 90 | 10 | 100 | 82–100 |
2. Follow-up (mean score, 81%) | ||||
Home care knows about the patient’s situation | 46 | 54 | 64 | 14–80 |
Patient knows which activities are allowed at homea
| 70 | 30 | 91 | 57–86 |
Patient knows which side effects to be aware ofa
| 73 | 27 | 86 | 55–100 |
Patient knows when to contact the primary care doctor or specialista
| 77 | 23 | 98 | 57–100 |
Patient knows at discharge which medication to take and why | 89 | 11 | 94 | 83–100 |
The primary care doctor knows about the patient’s situation | 92 | 8 | 93 | 83–100 |
Patient follow-up takes place on an agreed schedule | 95 | 5 | 98 | 87–100 |
Specialist has enough time during consultations | 95 | 5 | 100 | 93–100 |
Patient can reach the specialist between consultations | 94 | 6 | 83 | 89–100 |
3. Communication and respect (mean score, 95%) | ||||
Specialist showed interest in you as a persona
| 89 | 11 | 99 | 67–100 |
Specialists talked to others as if you were not there | 95 | 5 | 95 | 91–100 |
Nurses talked as if you were not there | 96 | 4 | 93 | 91–100 |
Nurses showed interest in you as a person | 96 | 4 | 97 | 86–100 |
Patient trusts in the specialists | 97 | 3 | 98 | 91–100 |
Patient trusts the nurses | 97 | 3 | 96 | 86–100 |
Patient feels respected during treatment | 98 | 2 | 99 | 91–100 |
4. Patient and family involvement (mean score, 84%) | ||||
Nurses involved family and friends during care and follow-upa
| 71 | 29 | 98 | 61–100 |
Specialists involved family and friends during treatment and follow-upa
| 82 | 18 | 97 | 73–100 |
Specialists shared the decision making with the patienta
| 82 | 18 | 97 | 67–100 |
Family and friends had opportunities to ask the specialists questionsa
| 83 | 17 | 94 | 60–100 |
Family and friends had opportunities to ask the nurses questionsa
| 86 | 14 | 89 | 76–100 |
Patient had the knowledge and support to make decisions | 88 | 12 | 97 | 82–100 |
Patient had opportunities to ask questionsa
| 89 | 11 | 98 | 76–100 |
Specialists discussed aim and follow-up of the treatment with the patient | 92 | 8 | 99 | 87–100 |
5. Information (mean score, 68%) | ||||
Patient received information on all ten information itemsa (see note under Table 5) | 19 | 81 | 95 | 17–57 |
Patient received written informationa
| 75 | 25 | 99 | 64–86 |
Patient received clear answers from the nurses | 77 | 13 | 97 | 83–100 |
Patient received contradictory information | 79 | 11 | 94 | 85–100 |
Patient received clear answers from the specialistsa
| 90 | 10 | 100 | 77–100 |
6. Coordination (mean score, 71%) | ||||
Coordination: specialists (mean score, 87%) | ||||
Specialists involved knew patient’s history | 83 | 17 | 94 | 75–94 |
Patient knew how to reach specialistsa
| 84 | 16 | 100 | 65–100 |
Patient knew about being discussed in a multidisciplinary team of specialistsa
| 85 | 15 | 100 | 67–100 |
Specialists involved took care of the coordinationa
| 87 | 13 | 75 | 73–100 |
Patient knew which specialist is his main contact person | 95 | 5 | 100 | 87–100 |
Coordination: specialised nurse(s) (mean score, 55%) | ||||
Oncology nurse was present during bad news consultationa
| 36 | 64 | 100 | 21–63 |
Existence of an oncology nurse was known by patienta
| 53 | 47 | 93 | 33–86 |
Patient knew how to reach oncology nursea
| 53 | 47 | 100 | 46–86 |
Oncology nurse knew patient’s history | 61 | 39 | 29 | 38–100 |
Oncology nurses took care of the coordination | 71 | 29 | 50 | 50–100 |
Coordination: Paramedics (mean score, 70%) | ||||
Patient knew how to reach paramedic professionals | 55 | 45 | 61 | 36–100 |
Paramedic professionals involved knew patient’s history | 76 | 24 | 62 | 53–100 |
Paramedic professionals involved took care of the coordination | 80 | 20 | 43 | 50–100 |
7. Physical support (mean score, 58%) | ||||
Patient got support for daily activities at home | 36 | 74 | 72 | 10–40 |
Patient got support to control physical complaintsa
| 58 | 42 | 89 | 25–78 |
Patient got support for daily activities in the hospital | 80 | 20 | 88 | 73–92 |
8. Emotional and psychosocial support (mean score, 46%) | ||||
Patient was offered contact with companion in distressa
| 13 | 87 | 100 | 0–43 |
Patient was asked whether he had psychological complaintsa
| 34 | 66 | 83 | 18–60 |
Patient was asked whether he had problems with living conditionsa
| 36 | 64 | 85 | 23–60 |
Patient received support from specialised caregivers in mental health if needed | 39 | 61 | 28 | 0–100 |
Specialist asked patient about fear and mental statea
| 52 | 48 | 88 | 32–100 |
Patient received emotional support from nurses if needed | 74 | 26 | 65 | 63–100 |
Patient received emotional support from specialists if needed | 74 | 26 | 60 | 46–100 |
Alpha coefficient | |
---|---|
Access | |
Patient receives all necessary diagnostic procedures within 21 days after his first visit to the specialist | 0.87 |
Patient starts his treatment within 35 days after his first visit to the specialist | |
Follow-up | |
Patient knows which side effects to be aware of at home | 0.78 |
Patient knows which activities are allowed at home | |
Patient knows when to contact the primary care doctor or specialist | |
Communication and respect | |
Specialist shows interest in the patient as a person | |
Patient and family involvement | |
Nurses involve family and friends during care and follow-up | 0.85 |
Specialists involve family and friends during treatment and follow-up | |
Specialists share the decision making with the patient | |
Family and friends have opportunities to ask the specialists questions | |
Family and friends have opportunities to ask the nurses questions | |
Patient has opportunities to ask questions | |
Information | |
Patient receives information on all ten items if applicablea
| 0.78 |
Patient receives written information on all applicable itemsa
| |
Patient receives clear answers from the specialists | |
Coordination: specialists | |
Patient knows how to reach the specialists | 0.22 |
Patient knows being discussed in a multidisciplinary team of specialists | |
The specialists involved take care of the coordination | |
Coordination: oncology nurse(s) | |
An oncology nurse was present during the bad news consultation | 0.68 |
Patient knows that nurses specialising in oncology exist | |
Patient knows how to reach the oncology nurse | |
Physical support | |
Patient gets support to control physical complaints such as pain, suffocation, nausea, blood coughs, tingling, weight loss and insomnia | |
Emotional support | |
Patient is offered contact with a companion in distress | 0.67 |
Patient is asked about psychological complaints | |
Patient is asked whether has problems with living conditions | |
Specialist asks the patient about possible fear and mental state |