| Literature DB >> 32517678 |
Leslye Rojas-Concha1,2, Maiken Bang Hansen3, Morten Aagaard Petersen3, Mogens Groenvold3,4.
Abstract
BACKGROUND: The assessment of patients' quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.Entities:
Keywords: Advanced cancer; EORTC QLQ-C15-PAL; Palliative care; Patient-reported outcomes; Quality of life; Symptom assessment
Year: 2020 PMID: 32517678 PMCID: PMC7282045 DOI: 10.1186/s12904-020-00586-1
Source DB: PubMed Journal: BMC Palliat Care ISSN: 1472-684X Impact factor: 3.234
Characteristics of 48 patients and 35 health care professionals participating in interviews
| Patient characteristics | Patients | Health care professionals | ||
|---|---|---|---|---|
| (%) | (%) | |||
| Sex | ||||
| Men | 16 | (33.3) | 9 | (25.7) |
| Women | 32 | (66.7) | 26 | (74.3) |
| Age | ||||
| Mean (SD) | 59.2 | (13.1) | 40.9 | (12.7) |
| Median (range) | 60 | (29–86) | 39 | (23–70) |
| Hospitals | ||||
| Sotero del Rio | 27 | (56.3) | 12 | (34.3) |
| San Juan de Dios | 4 | (8.3) | 5 | (14.3) |
| Salvador | 13 | (27.1) | 11 | (31.4) |
| Felix Bulnes Cerda | 4 | (8.3) | 7 | (20.0) |
| Diagnosis (cancer site, ICD-10) | ||||
| Prostate (C61) | 7 | (14.6) | ||
| Stomach (C16) | 5 | (10.4) | ||
| Multiple myeloma (C90) | 5 | (10.4) | ||
| Breast (C50) | 4 | (8.3) | ||
| Colorectal (C18-C20) | 3 | (6.3) | ||
| Melanoma skin cancer (C43) | 3 | (6.3) | ||
| Uterine (C54-C55) | 3 | (6.3) | ||
| Ovarian (C56, C570-C574) | 3 | (6.3) | ||
| Liver (C22) | 2 | (4.2) | ||
| Sarcoma (C46-C49) | 2 | (4.2) | ||
| Cervical (C53) | 2 | (4.2) | ||
| Kidney (C64-C66) | 2 | (4.2) | ||
| Lymphoma (C81-C85) | 2 | (4.2) | ||
| Other cancer (all other C codes) | 5 | (10.4) | ||
| Discipline of HCPs | ||||
| Physician | 12 | (34.3) | ||
| Nurse | 7 | (20.0) | ||
| Psychologist | 7 | (20.0) | ||
| Paramedic | 6 | (17.1) | ||
| Physiotherapist | 1 | (2.9) | ||
| Social worker | 1 | (2.9) | ||
| Nutritionist | 1 | (2.9) | ||
| Years of experience of HCPs | ||||
| Mean (SD) | 13.9 | (11.9) | ||
| Median (range) | 11 | (1–42) | ||
SD standard deviation, ICD-10 International Statistical Classification of Diseases and Related Health Problems 10th Revision
Relevance, inappropriateness and importance of items reported by 48 patients and 35 health care professionals
| Scale/item | Item | Relevance (mean) | % Inappropriate | % Selected as one of the most important | ||||
|---|---|---|---|---|---|---|---|---|
| Pts. | HCPs | Pts. | HCPs | Pts. | HCPs | /2a | ||
| Pain (PA) | 100 | 97 | 0 | 0 | 96 | 77 | ||
| 97 | 80 | 2 | 6 | 27 | 54 | |||
| Any PA item | 98 | 94 | 96 | |||||
| Physical functioning (PF) | 1 | 77 | 64 | 6 | 9 | 40 | 3 | |
| 2 | 78 | 63 | 2 | 0 | 25 | 3 | ||
| 76 | 73 | 4 | 3 | 17 | 9 | |||
| 83 | 85 | 6 | 3 | 23 | 51 | |||
| 98 | 95 | 0 | 0 | 60 | 71 | |||
| Any PF item | 98 | 80 | 89 | |||||
| Sleeping difficulties (SL) | 97 | 95 | 0 | 0 | 75 | 86 | 80 | |
| Emotional functioning (EF) | 95 | 63 | 0 | 3 | 19 | 6 | ||
| 22 | 93 | 68 | 0 | 2 | 21 | 11 | ||
| 23 | 92 | 73 | 0 | 0 | 21 | 17 | ||
| 98 | 89 | 0 | 0 | 38 | 60 | |||
| Any EF item | 73 | 83 | 78 | |||||
| Nausea and vomiting (NV) | 96 | 88 | 0 | 0 | 25 | 54 | ||
| 15 | 97 | 87 | 0 | 0 | 35 | 46 | ||
| Any NV item | 46 | 69 | 57 | |||||
| Fatigue (FA) | 10 | 97 | 67 | 2 | 3 | 50 | 6 | |
| 92 | 73 | 0 | 3 | 31 | 20 | |||
| 92 | 74 | 2 | 3 | 42 | 14 | |||
| Any FA item | 77 | 34 | 56 | |||||
| Social functioning (SF) | 26 | 93 | 89 | 2 | 3 | 31 | 54 | |
| 27 | 88 | 83 | 4 | 0 | 8 | 31 | ||
| Any SF item | 38 | 60 | 49 | |||||
| Lack of appetite (AP) | 99 | 86 | 0 | 0 | 35 | 57 | 46 | |
| Role functioning (RF) | 6 | 95 | 79 | 0 | 0 | 50 | 23 | |
| 7 | 82 | 57 | 2 | 6 | 31 | 6 | ||
| Any RF item | 60 | 26 | 43 | |||||
| Constipation (CO) | 92 | 83 | 0 | 0 | 29 | 54 | 42 | |
| Financial difficulties (FI) | 28 | 93 | 81 | 4 | 3 | 35 | 49 | 42 |
| Global health status/ | 29 | 97 | 90 | 0 | 0 | 8 | 23 | |
| Quality of life (QOL) | 95 | 89 | 0 | 3 | 15 | 49 | ||
| Any QL item | 23 | 54 | 39 | |||||
| Dyspnea (DY) | 70 | 70 | 2 | 3 | 46 | 17 | 31 | |
| Cognitive functioning (CF) | 20 | 90 | 54 | 0 | 3 | 21 | 6 | |
| 25 | 97 | 67 | 0 | 0 | 15 | 14 | ||
| Any CF item | 33 | 17 | 25 | |||||
| Diarrhea (DI) | 17 | 93 | 79 | 2 | 0 | 17 | 20 | 18 |
The scales/items are ranked according to importance. Items in bold form were extracted from the EORTC QLQ-C30 to form the EORTC QLQ-C15-PAL questionnaire
a The mean of the values for patients (Pts.) and health care professionals (HCPs)
Categorized reasons why some items were rated as little or not relevant by the participants
| Scale/item | Item | Relevancea | Technical issuesb | Inappropriatec | Relatived | Not importante | Difficultf | Total | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Pts. | HCPs | Pts. | HCPs | Pts. | HCPs | Pts. | HCPs | Pts. | HCPs | Pts. | HCPs | |||
| Pain | 9 | 1 | 1 | |||||||||||
| 19 | 3 | 1 | 2 | 1 | 7 | |||||||||
| Physical functioning | 1 | 5 | 5 | 3 | 3 | 1 | 17 | |||||||
| 2 | 4 | 6 | 1 | 1 | 1 | 1 | 1 | 1 | 16 | |||||
| 3 | 4 | 6 | 1 | 2 | 1 | 1 | 1 | 1 | 17 | |||||
| 4 | 3 | 2 | 1 | 1 | 1 | 8 | ||||||||
| 5 | – | |||||||||||||
| Emotional functioning | 21 | 1 | 5 | 1 | 2 | 1 | 1 | 1 | 1 | 13 | ||||
| 22 | 1 | 5 | 2 | 1 | 1 | 1 | 1 | 12 | ||||||
| 23 | 1 | 4 | 5 | 1 | 1 | 12 | ||||||||
| 24 | 2 | 3 | 1 | 6 | ||||||||||
| Fatigue | 10 | 5 | 1 | 1 | 1 | 1 | 1 | 10 | ||||||
| 12 | 3 | 2 | 3 | 1 | 2 | 1 | 12 | |||||||
| 18 | 1 | 4 | 1 | 1 | 2 | 1 | 10 | |||||||
| Nausea and vomiting | 14 | 1 | 2 | 2 | 5 | |||||||||
| 15 | 2 | 1 | 3 | |||||||||||
| Sleeping difficulties | 11 | 1 | 1 | |||||||||||
| Social functioning | 26 | 1 | 1 | 1 | 1 | 1 | 5 | |||||||
| 27 | 1 | 2 | 2 | 1 | 2 | 8 | ||||||||
| Dyspnea | 8 | 3 | 5 | 14 | 13 | 1 | 1 | 1 | 1 | 39 | ||||
| Role functioning | 6 | 2 | 1 | 3 | 1 | 7 | ||||||||
| 7 | 4 | 11 | 1 | 1 | 2 | 1 | 20 | |||||||
| Constipation | 16 | 1 | 10 | 7 | 18 | |||||||||
| Lack of appetite | 13 | 1 | 1 | |||||||||||
| Financial difficulties | 28 | 1 | 2 | 1 | 2 | 1 | 1 | 8 | ||||||
| Global health status/ | 29 | 2 | 1 | 1 | 4 | |||||||||
| Quality of life | 30 | 1 | 2 | 3 | 1 | 1 | 1 | 1 | 10 | |||||
| Cognitive functioning | 20 | 4 | 11 | 1 | 1 | 4 | 21 | |||||||
| 25 | 1 | 8 | 1 | 1 | 11 | |||||||||
| Diarrhea | 17 | 3 | 1 | 1 | 5 | |||||||||
| Total | 36 | 96 | 39 | 56 | 15 | 17 | 18 | 3 | 5 | 14 | 4 | 4 | 307 | |
Categorized comments about linguistic issues found in the dyspnea and constipation items of EORTC QLQ-C30
| Scale/item | Item | Participant comments and suggestions for alternative wording (quotation marks) | Pts. | HCPs |
|---|---|---|---|---|
| Dyspnea | 8 | Not well formulated | 1 | 2 |
| “Ran out of air” | 1 | 2 | ||
| “Lack of air” | 3 | 4 | ||
| “Ran out of breath” | 5 | 2 | ||
| “Difficulty breathing” | 2 | 1 | ||
| “Maximum tiredness” | 2 | |||
| Did not understand “short of breath” | 2 | |||
| Total | 14 | 13 | ||
| Constipation | 16 | “Difficulty defecating” | 3 | 6 |
| “Troubles defecating” | 2 | 1 | ||
| “Bowel movements” | 1 | 2 | ||
| Did not understand “constipated” | 1 | 1 | ||
| Total | 7 | 10 |
Pts Patients, HCPs health care professionals
Additional issues that would be relevant to include when evaluating the outcome of palliative care
| Additional issues categories | Pts. | HCPs |
|---|---|---|
| Satisfaction with care | 8 | 4 |
| Satisfaction with health care professionals, satisfaction with the information received, adherence to treatment, effectiveness of medication and side effects | ||
| Emotions | 5 | 7 |
| Role loss, mood changes, sadness, anhedonia, fear | ||
| Psychological support | 6 | 6 |
| Psychological needs, significant changes to the way of living, facing life with advanced cancer, measure psychological distress, personality disorders | ||
| Sexuality | 1 | 10 |
| Sexual satisfaction, sexual activity | ||
| Social support | 4 | 5 |
| Support from family/relatives, caregivers’ distress, cohabitation, e.g., whom do you live with? | ||
| Symptoms and problems | 2 | 7 |
| Visual problems, sleeping tongue, eating/swallowing problems, drowsiness, dementia/delirium, urinary problems | ||
| Existential issues | 1 | 8 |
| Thoughts about death, uncertainty about future, transcendence | ||
| Spiritual issues | 6 | |
| Spiritual pain, spirituality | ||
| Physical difficulties | 3 | 3 |
| Ability to move around on you own at home, toileting independence | ||
| Economic problems | 1 | 4 |
| Delay in sick leave payment, transportation expenses, e.g., go to hospital | ||
| Total number of issues | 31 | 60 |
Pts Patients, HCPs health care professionals