Background
Methods
Settings and participants
Measures
Administration of the QPP-PC to patients
Procedure and data collection
Ethical approval
Statistical analysis
Results
The adaptation of QPP to palliative care
First step: selection of existing items
Second step: modification of existing items
Third step: construction of new items
Fourth step: pilot evaluation
Patient characteristics
n (%) | Missing | |
---|---|---|
Age (years) | 7 | |
Mean age (SD), range | 66.51 (11.71), 41–94 | |
Gender | 3 | |
Female | 101 (55.8) | |
Male | 80 (44.2) | |
Education | 5 | |
Primary school or equivalent | 44 (24.6) | |
High school or equivalent | 69 (38.5) | |
University/university college | 66 (36.9) | |
First language | 1 | |
Norwegian | 171 (93.4) | |
Sami | 0 | |
Other Nordic language | 3 (1.6) | |
Other European language | 8 (4.4) | |
Non-European language | 1 (0.5) | |
Type of illness | 1 | |
Malignant illness (cancer) | 139 (76.0) | |
Non-malignant illness (e.g. COPD, HF, MS, ALS, Parkinson’s disease) | 29 (15.8) | |
Mixed malignant and non-malignant illnesses | 15 (8.2) | |
Number of illnesses | 1 | |
One diagnosis | 128 (69.9) | |
Two or more illnesses | 55 (30.1) | |
Setting | ||
Hospice inpatient care | 69 (37.5) | |
Hospice day care | 51 (27.7) | |
Palliative care units in nursing homes | 29 (15.8) | |
Home care | 35 (19.0) | |
Time in care (days) | 11 | |
3–7 days | 30 (17.3) | |
8–30 days | 51 (29.5) | |
31–182 days (1–6 months) | 47 (27.2) | |
> 183 (6 months) | 45 (26.0) | |
Living conditions | 1 | |
Living alone | 95 (51.9) | |
Living with a partner | 69 (37.7) | |
Living with children aged <18 years | 11 (6.8) | |
Living with others | 8 (4.4) | |
The amount of contact with family or friends | 1 | |
Daily | 107 (58.5) | |
Several times a week | 62 (33.9) | |
Once a week to once a month | 14 (7.7) | |
Less than once a month | 0 | |
No contact with family or friends | 0 | |
The sufficiency of contact with family or friends | 1 | |
Too often | 5 (2.7) | |
Sufficient | 155 (84.7) | |
Too seldom | 23 (12.6) | |
Religious affiliation | 12 | |
No | 90 (52.3) | |
Yes | 82 (47.7) |
Construct validity measured by EFA using PCA
Items/Factors | Respect and empathy | Symptom relief | Information | Spiritual and existential | Meaning fullness | Participation | Planning and cooperation | Honesty | Relatives and friends | Exhaustion | Access to help, food and equipment | Continuity |
---|---|---|---|---|---|---|---|---|---|---|---|---|
Help for: | ||||||||||||
Pain | 0.332 | |||||||||||
Nausea | 0.722 | |||||||||||
Lack of appetite | 0.525 | |||||||||||
Shortness of breath | 0.392 | |||||||||||
Anxiety | 0.762 | |||||||||||
Depression | 0.763 | |||||||||||
Lack of sleep | 0.726 | |||||||||||
Constipation/diarrhoea | 0.575 | |||||||||||
Help for: | ||||||||||||
Tiredness | 0.797 | |||||||||||
Drowsiness | 0.774 | |||||||||||
Waiting time | 0.574 | |||||||||||
Food and drink | 0.484 | |||||||||||
Apparatus and equipment | 0.522 | |||||||||||
Doctors’ understanding | 0.664 | |||||||||||
Nurses’ understanding | 0.698 | |||||||||||
Other personnel’sa understanding | 0.494 | |||||||||||
Doctors’ respect | 0.859 | |||||||||||
Nurses’ respect | 0.837 | |||||||||||
Other personnel’sa respect | 0.656 | |||||||||||
Doctors gives honest answers | 0.512 | |||||||||||
Nurses give honest answers | 0.664 | |||||||||||
Other personnela give honest answers | 0.795 | |||||||||||
Information care and treatment | 0.488 | |||||||||||
Information on medication | 0.346 | |||||||||||
Information on diagnosis | 0.652 | |||||||||||
Information on prognosis | 0.681 | |||||||||||
Information on self-care | 0.754 | |||||||||||
Responsible doctor | 0.525 | |||||||||||
Responsible nurse | 0.516 | |||||||||||
Participation in medical care | 0.760 | |||||||||||
Participation in nursing care | 0.767 | |||||||||||
Participation in plan for care | 0.514 | |||||||||||
Participation in place of care | 0.424 | |||||||||||
Doctors give spiritual support | 0.876 | |||||||||||
Nurses give spiritual support | 0.892 | |||||||||||
Other personnela give spiritual support | 0.885 | |||||||||||
Doctors support meaningfulness | 0.831 | |||||||||||
Nurses support meaningfulness | 0.785 | |||||||||||
Other personnela support meaningfulness | 0.718 | |||||||||||
Relatives treated with respect | 0.775 | |||||||||||
Relatives receiving support | 0.789 | |||||||||||
Relatives’ participation in decisions about care | 0.705 | |||||||||||
Same doctor | 0.748 | |||||||||||
Same nurse | 0.481 | |||||||||||
Individualized care | 0.400 | |||||||||||
Planning medical care | 0.747 | |||||||||||
Planning nursing care | 0.773 | |||||||||||
Cooperative personnel | 0.764 | |||||||||||
Cooperative services | 0.530 | |||||||||||
Number of items | 6 | 8 | 7 | 3 | 3 | 4 | 4 | 3 | 3 | 2 | 3 | 3 |
Eigenvalue | 12.79 | 3.74 | 2.79 | 2.30 | 2.15 | 1.96 | 1.63 | 1.52 | 1.34 | 1.26 | 1.15 | 1.06 |
Explained varianceb
| 26.10 | 7.63 | 5.69 | 4.70 | 4.39 | 4.01 | 3.33 | 3.10 | 2.74 | 2.56 | 2.35 | 2.16 |
Reliability
Dimensions/Factors/Items | Cronbach’s αa
| |
---|---|---|
Subjective importance (SI) | Perceived reality (PR) | |
Medical–technical competence (12 items) | 0.91 | 0.91 |
Symptom relief | 0.91 | 0.88 |
I receive the best possible help for: | ||
Pain | ||
Nausea/vomiting | ||
Loss of appetite | ||
Shortness of breath | ||
Depression (feeling sad) | ||
Anxiety (feeling nervous) | ||
Lack of sleep | ||
Constipation/diarrhoea | ||
Exhaustion | 0.89 | 0.88 |
I receive the best possible help to take care of my: | ||
Tiredness (lack of energy) | ||
Drowsiness (feeling sleepy) | ||
I receive: | ||
The best possible medical care (single item) | ||
The best possible help to take care of my personal hygiene (single item) | ||
Physical–technical conditions (3 items) | 0.65 | 0.44 |
Access to help, food and equipment | 0.65 | 0.44 |
I receive help within an acceptable waiting times | ||
I receive food and drink that I like | ||
I have access to the necessary equipment | ||
Identity-oriented approach (20 items) | 0.94 | 0.88 |
Information | 0.83 | 0.83 |
I receive useful information on: | ||
How care and treatments will take place | ||
The effects and use of medicine | ||
My illness and my symptoms | ||
What I may expect in the near future (development of the illness and symptoms, my health and function) | ||
How to take care of myself | ||
Which doctor are responsible for my medical care | ||
Which nurse are responsible for my nursing care | ||
Honesty | 0.87 | 0.78 |
The personnel seem to give me honest answers to my questions: | ||
Doctors | ||
Nurses | ||
Other personnel | ||
Respect and empathy | 0.92 | 0.81 |
The personnel seem to understand how I experience my situation: | ||
Doctors | ||
Nurses | ||
Other personnel | ||
The personnel are respectful towards me: | ||
Doctors | ||
Nurses | ||
Other personnel | ||
Participation | 0.88 | 0.81 |
I have good opportunity to participate in the decisions that apply to: | ||
Medical care | ||
Nursing care | ||
Individual plan for my care | ||
Choose where to receive my care | ||
Socio-cultural atmosphere (17 items) | 0.92 | 0.90 |
Meaningfulness | 0.96 | 0.89 |
The personnel support and assist me in living the rest of my life in a meaningful way: | ||
Doctors | ||
Nurses | ||
Other personnel | ||
Spiritual and existential | 0.97 | 0.96 |
The personnel support and assist me in tending to my spiritual and existential needs: | ||
Doctors | ||
Nurses | ||
Other personnel | ||
Relatives and friends | 0.79 | 0.66 |
My relatives: | ||
And friends are treated with respect | ||
Receive the best possible help, support and care | ||
May participate in decisions about my care, according to my preferences | ||
Continuity | 0.55 | 0.53 |
I usually receive help from the same: | ||
Doctor | ||
nurse | ||
My care is determined by my own requests and needs rather than staff procedures | ||
Planning and cooperation | 0.79 | 0.83 |
There is good planning of my: | ||
Medical care | ||
Nursing care | ||
The personnel cooperate well | ||
All the health and welfare services that I receive are well coordinated | ||
There is a pleasant and secure atmosphere on the ward (single item) |
Patients’ perceptions of quality of palliative care
Dimensions/factors/single items | Subjective importance (SI) | Perceived reality (PR) | ||
---|---|---|---|---|
Mean (SD) | Mean (SD) |
n
|
p value | |
Medical–technical competence | 3.16 (0.61) | 3.04 (0.70) | 180 | 0.018 |
Symptom relief | 3.22 (0.62) | 3.10 (0.72) | 180 | 0.012 |
Fatigue/exhaustion | 3.01 (0.83) | 2.88 (0.94) | 164 | 0.092 |
Medical care (single item) | 3.74 (0.53) | 3.57 (0.73) | 181 | <0.01 |
Personal hygiene (single item) | 3.47 (0.69) | 3.49 (0.70) | 125 | 0.790 |
Physical–technical conditions | 3.49 (0.55) | 3.51 (0.58) | 182 | 0.686 |
Access to help, food and equipment | 3.49 (0.55) | 3.51 (0.58) | 182 | 0.686 |
Identity-oriented approach | 3.51 (0.46) | 3.36 (0.48) | 184 | <0.01 |
Respect and empathy | 3.66 (0.50) | 3.66 (0.41) | 181 | 0.923 |
Honesty | 3.70 (0.44) | 3.74 (0.45) | 178 | 0.291 |
Information | 3.38 (0.57) | 3.11 (0.72) | 182 | <0.01 |
Participation | 3.31 (0.75) | 3.11 (0.83) | 176 | <0.01 |
Sociocultural atmosphere | 3.39 (0.49) | 3.34 (0.52) | 183 | 0.120 |
Spiritual and existential | 2.98 (1.04) | 2.99 (0.94) | 122 | 0.837 |
Meaningfulness | 3.49 (0.71) | 3.47 (0.68) | 180 | 0.688 |
Relatives and friends | 3.61 (0.51) | 3.59 (0.55) | 153 | 0.545 |
Continuity | 3.27 (0.66) | 3.16 (0.71) | 180 | 0.043 |
Planning and cooperation | 3.57 (0.55) | 3.45 (0.64) | 171 | <0.01 |
Atmosphere (single item) | 3.79 (0.43) | 3.89 (0.33) | 123 | <0.01 |