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Open Access 10-02-2018 | Review

Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments

Auteurs: Janneke van Roij, Heidi Fransen, Lonneke van de Poll-Franse, Myrte Zijlstra, Natasja Raijmakers

Gepubliceerd in: Quality of Life Research | Uitgave 8/2018

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Abstract

Purpose

Patient-reported outcome measures (PROMs) are becoming increasingly important in clinical practice. The implementation of PROMS in routine practice is challenging because information regarding psychometric quality of measurement instruments is fragmented and standardization is lacking. The aim of this study is to evaluate the quality of self-administered HRQoL measurement instruments for use in patients with advanced cancer in clinical practice.

Methods

A systematic literature search was performed in PubMed, Embase, PsycINFO, and CINAHL to identify studies concerning self-administered HRQoL measurement instruments in patients with advanced cancer between January 1990 and September 2016. Quality of the measurement instruments was assessed by predefined criteria derived from the COSMIN checklist.

Results

Sixty-nine articles relating to 39 measurement instruments met the inclusion criteria. Information regarding important measurement properties was often incomplete. None of the instruments performed sufficient on all measurement properties. Considering available information, the EORTC QLQ-C15-PAL appeared to have adequate psychometric properties, together with the EORTC QLQ-BM22.

Conclusions

Many of the existing HRQoL measurement instruments have not yet been evaluated in an adequate manner. Validation of self-administered HRQoL measurement instruments is an ongoing development and should be prioritized. This review contributes to improved clarity regarding the availability and quality of HRQoL measurement instruments for patients with advanced cancer and supports health care professionals in an adequate selection of suitable PROMs in clinical practice.
Opmerkingen

Electronic supplementary material

The online version of this article (https://​doi.​org/​10.​1007/​s11136-018-1809-4) contains supplementary material, which is available to authorized users.

Introduction

Integration of palliative care in oncology is recommended by European Society for Medical Oncology (ESMO) and American Society of Clinical Oncology (ASCO) as oncological palliative care will enhance quality of life (QoL), and may also positively influence the course of illness [1]. In their landmark paper, Temel et al. showed that early palliative care in fact leads to significant improvements in both health-related quality of life (HRQoL) and mood [2]. For high-quality oncological palliative care in advanced cancer patients it is essential to monitor HRQoL in clinical practice in a suitable manner [3]. HRQoL generally consists of four domains: physical well-being, psychological well-being, social well-being, and spiritual well-being. Especially the spiritual well-being is important in patients with advanced cancer due to the confrontation with death [412]. Monitoring symptoms and HRQoL is extremely important in advanced cancer care, because it increases awareness among health care professionals to better anticipate on patients’ changing needs [13, 14] and improves clinical outcomes (i.e. fewer emergency room visits, fewer hospitalizations, a longer duration of palliative chemotherapy, and superior quality-adjusted survival), as recently demonstrated by Basch et al. [14].
The best method to monitor HRQoL in patients is to ask patients themselves, as asking health professionals or relatives is considered a less accurate method for estimating the HRQoL of a patient [15]. Inclusion of patient-reported outcome measures (PROMs) in routine clinical practice is, beside clinical benefits, also associated with improvements in discussion of patient outcomes during consultations and patient satisfaction [1618]. However, the implementation of PROMS in routine practice is challenging because information regarding psychometric quality of measurement instruments is fragmented and standardization is lacking [19].
Earlier reviews have identified a variety of HRQoL measurement instruments that were appropriate for use in oncological palliative care [2027]. However, none of these reviews could serve as a guide for an adequate and comprehensive choice of a measurement instrument for routine clinical practice because none used explicit criteria assessing measurement properties. For this reason, in 2010 Albers et al. [28] made an inventory of available HRQoL measurement instruments that were suitable for the use in palliative care and assessed the quality of these instruments. This review identified 29 different measurement instruments and showed a wide variety in measurement aim, content, target population, method (e.g. interview, questionnaire), completion time/length, and clinimetric quality [28]. In the last six years, a growing body of research has been published on the quality of existing HRQoL measurement instruments and also the development of new instruments is ongoing. It remains unclear what PROMs are most suitable for advanced cancer patients, receiving oncological palliative care nowadays.
Because the measurement of HRQoL in advanced cancer patients is a rapidly evolving field and the importance of PROMs in clinical practice is growing, an updated review on HRQoL measurement instruments seems appropriate. The aim of this study is to evaluate the quality of self-administered instruments measuring HRQoL of patients with advanced cancer for use in oncological palliative care nowadays. The methodological quality of the measurement instruments is described in terms of measurement properties and measurement quality. This review aims to contribute to more clarity regarding the availability and quality of self-administered HRQoL measurement instruments for patients with advanced cancer and to support health care professionals in an adequate selection of suitable PROMs in advanced cancer patients in clinical practice.

Methods

Search strategy

An electronic search of the database PubMed, Embase, PsycInfo, and CINAHL was performed to identify papers about instruments to measure HRQoL in advanced cancer patients that were published in English or Dutch between January 1990 and September 2016. Non-validation studies (article type) were excluded. A search strategy was developed for finding relevant publications in electronic literature databases, based on the search strategy of Albers et al. [28]. The computerized search was conducted using a search strategy to find studies on HRQoL measurement instruments in oncological palliative care: ‘palliative’, ‘instruments’, and ‘QoL’. A detailed description of the MeSH-terms and keywords used in the search can be found in Supplement 1. The search string was initially developed in PubMed and later adapted for the other databases. Additionally, all Validation Studies (article type) of the 29 identified HRQoL measurement instruments of the review of Albers et al. [28] were added. In addition, the reference lists of selected articles were screened to retrieve relevant publications which had not been found in the computerized search.

Study selection process

Two reviewers (NR and HF) used a stepwise procedure to identify relevant studies. Firstly, all papers’ titles and abstracts were assessed for relevance by one of the reviewers (NR) to see if the study describes the development or validation of a measurement instrument and whether the study involves (at least two domains of) HRQoL as outcome measurement. Irrelevant titles were excluded. Secondly, abstracts were screened by two reviewers (NR and HF) on the following inclusion criteria: (i) the study concerned the development or validation of a self-administered measurement instrument; (ii) non-primary tumour-specific HRQoL (and at least two of its domains) was a primary or secondary objective of the study; (iii) the target population of the study included adult patients (i.e. ≥ 18 years old) with advanced or metastatic cancer; (iv) the measurement instrument used in the study was provided in Dutch or English language; (v) only full-text English or Dutch reports were included. Consensus regarding exclusion based on these exclusion criteria was reached after a consensus meeting. Of all the studies that did not pass the selection process, the reasons for exclusion were listed. Full-text papers were also assessed on the above-mentioned criteria and conference abstracts were excluded.

Data extraction procedure

Two reviewers (NR and JvR) independently reviewed five randomly selected papers using a standard data extraction sheet and compared results to evaluate uniformity. Then, all papers were divided between the two researchers (NR and JvR) for data extraction. The procedure to confirm uniformity was repeated three times during the data extraction phase.
The methodological quality of included validation studies was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist devised by Mokkink et al. [29]. Supplement 2 gives an overview and a description of the criteria used to assess quality. The assessment for the methodological quality of studies on measurement properties of health status measurements instruments covers nine topics: internal consistency, reliability, measurement error, content validity, construct validity (i.e. structural validity, hypotheses testing, and cross-cultural validity), criterion validity, and responsiveness. The methodological quality of the selected publications was assessed by two researchers (NR and JvR). The quality assessment was evaluated in the same manner as described earlier.

Results

Selection of papers

A flowchart of the selection process is presented in Fig. 1. In total, 4088 articles were identified from the different electronic databases, excluding duplicates. Initially, 3854 papers were excluded based on screening of relevance of title and abstract. The abstracts of the remaining 234 articles were assessed in depth for eligibility by two researchers (NR and HF). Finally, 126 studies were suitable for full-text assessment. During full-text assessment, 37 studies were excluded. A number of studies (n = 11) were excluded because no full text was available after multiple attempts to retrieve the paper by contacting the author via Research gate or Email. Of these 11 papers, three were published more than 10 years ago, six were published in low-impact journals (impact factor < 2), which were often less accessible and two were untraceable. Other papers were excluded if they were a congress abstract (n = 14), the measurement instrument used in the study was in a language other than Dutch or English (n = 2), it was a duplicate (n = 4), it was not a self-administered measurement instrument (n = 4), it was not an measurement instrument (n = 2), or the measurement instrument was unidimensional or disease specific (n = 29). After checking reference lists of the selected articles, nine additional articles were identified. In total, 69 papers were included in this systematic review.

Study characteristics

The selected studies had between 10 and 3282 participants (21,077 participants in total) of whom 22–99% were men. Across studies, the average age of participants ranged from 51 to 79 years. Twenty percent of the studies included palliative patients suffering from various life-threatening illnesses (e.g. heart failure, end-stage lung disease, advanced renal disease, late-stage Parkinson disease, cancer), with the majority suffering from advanced cancer. Other studies focussed on cancer patients of which most studies (67%) included a mixed cancer population (i.e. various primary cancer sites). The remaining studies (13%) selected one specific primary cancer site: 4% patients with lung cancer, 3% women with breast cancer, 3% patients with brain tumours, 1% men with prostate cancer, and 1% patients with colorectal cancer.
Table 1 gives an overview of all the measurement instruments that were included in this review including the full form of the used acronyms. Across studies 39 measurement instruments were identified. Instruments were originally developed between 1972 (General Health Questionnaire -12) and 2013 [European Organisation of Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ)—Social Well-being 36]. The EORTC QLQ Core 30 (EORTC QLQ-C30) was most popular because ten studies (14%) validated this measure and seven studies (10%) administered a module of the EORTC (i.e. QLQ-Bone Metastases module 22 (QLQ-BM22), QLQ-Brain module 20 (QLQ-BN20), QLQ-Oral Health 17 (QLQ-OH17), and QLQ-SWB36). Nine studies (13%) validated the Edmonton Symptom Assessment Scale (ESAS) (or a modified or revised version of the ESAS), seven studies (10%) used the McGill Quality of Life Questionnaire (MQOL) (or the revised version), and four (6%) studies validated the Palliative care Outcome Scale (POS). For the majority of the measurement instruments (58%) they measure (HR)QoL, eight instruments (11%) with symptom assessment or the impact of symptoms on daily functioning. For other measurement instruments it is argued that they assess spiritual well-being or spiritual distress (14%), psychological disorders or depressive symptoms (5%), core concerns and palliative needs (2%), or parenting concerns for adults with cancer (2%).
Table 1
Overview of the included measurement instruments
Name
Acronym
Purpose of measurement
HRQoL domainsa
Year of development
Target population
#Items
Scoring
Recall time
Completion time
Assessment of Quality of life at the End of Life [30]
AQOL
Quality of life
All domains
1999
Patients in palliative care
20
Subscale
Last week
Not reported
Brain Symptom and Impact Questionnaire [31]
BASIQ
Symptom severity and impact on daily functional activities
PHW, PSW
Not reported
Patients with brain metastases
18
Subscale and total
Last 24 h
Not reported
Condensed Memorial Symptom Assessment Scale [32]
CMSAS
Symptom assessment
PHW, PSW
2004
Patients
32
Subscale
Past 7 days
Not reported
European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Bone Metastases module [3336]
EORTC QLQ-BM22
Health-related quality of life
All domains
2009
Cancer patients with bone metastases
22
Subscale and total
Not reported
< 15 min (72% of the patients)
European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Brain module [37]
EORTC QLQ-BN20
Quality of life
PHW, PSW
2011
Patients with brain metastases
20
Subscale and total
Not reported
Not reported
European Organisation for research and Treatment of cancer Quality of Life Core 15 palliative questionnaire [38, 39]
EORTC QLQ-C15-PAL
Physical and psychosocial symptoms and functioning
PHW, PSW
2006
Patients with advanced, incurable, and symptomatic cancer
15
Subscale and total
1 week
Not reported
European Organisation for Research and Treatment of cancer Quality of Life Questionnaire Core 30 [4049]
EORTC QLQ-C30 (and a shortened version)
Health-related quality of life
PHW, PSW, SOW
1993, 2004
Cancer patients
30, shortened version 12
Single items, subscale, and total
Last week
11–12 min
European Organisation for Research and Treatment of Cancer Core Questionnaire Oral Health [50]
EORTC QLQ-OH17
Oral and dental problems that may impact on quality of life
PHW, PSW
2012
Cancer patients
17
Subscale and total
Past week and present
Not reported
European Organisation for Research and Treatment of Cancer measure of Spiritual Well-being [51]
EORTC QLQ-SWB36
Spiritual well-being
PSW, SOW, SPW
2013
Palliative care patients with cancer
36
Subscale and total
Not reported
Not reported
Edmonton Symptom Assessment System [47, 5258]
ESAS (ESAS-r, M-ESAS, ESAS-WB)
Commonly encountered symptom s in palliative care (ESAS-WB: feeling of well-being)
PHW, PSW
1991, modified version in 2000
Patients receiving palliative care
9 (modified version: 10 VAS-items)
Total (ESAS-WB: single item)
Present
Not reported
EQ-5D [59]
EQ-5D
Generic health-related quality of life (especially used to conduct economic evaluations)
PHW, PSW, SOW
Not reported
Not reported
5 and VAS-item
Total and VAS score
Present
Not reported
Functional Assessment of Anorexia Cachexia Therapy [60, 61]
FAACT
General aspects of quality of life and anorexia/cachexia-related concerns
PHW, PSW, SPW
1997
Patients suffering from anorexia/cachexia
18
Subscale and total
Not reported
Not reported
Functional Assessment of Cancer Therapy General [48]
FACT-G
Cancer-specific quality of life
All domains
1993
Patients with cancer
34
Subscale and total
Not reported
Not reported
Functional assessment of Cancer Therapy—Brain [62]
FACT-Br
Quality of life
PHW, PSW
Not reported
Patients with primary brain tumours
50
Total
Last 7 days
Not reported
Functional Assessment of Chronic Illness Treatment [49]
FACIT-G
Quality of life
All domains
1993
Cancer patients
27
Subscale and total
Last week
Not reported
Functional Assessment of Chronic Illness Therapy-Palliative Care [63, 64]
FACIT-Pal
Health-related quality of life
All domains
2009
Palliative care patients
19
Subscales
Not reported
Not reported
General Health Questionnaire [65, 66]
GHQ-12
Psychological disorders
PSW, SOW, SPW
1972
Patients
12
Factors
Not reported
Not reported
Hospice Quality of Life Index [67, 68]
HQLI
Quality of life
All domains
1994, revised version in 1996
Hospice patients
25, revised version 28
Total, revised four factor scores
Present
Not reported
Hospital Anxiety and Depression Scale [66, 69]
HADS
Focus on the core depressive symptom of anhedonia
PHW, PSW
1983
Medically ill population
14
Subscale and total
Preceding week
< 5 min
Linear Analog Scale Assessments [70]
LASAs
Quality of life
PHW, PSW, SPW
1999
Neuro-oncology patients
5
Items
Past week
Not reported
McGill Quality of Life Questionnaire [47, 7176]
MQOL, revised version, Cardiff Short form (MQOL-CSF)
Quality of life
All domains
1995, revised version in 1997
Patients with a life-threatening illness
17, revised version 1, short form 8
Subscale and total
Past 2 days
10–30 min, 15–35 min when verbally supervised
Memorial Symptom Assessment Scale [47, 77]
MSAS-(SF)
Physical and psychological symptom burden
PHW, PSW
1994, short form in 2000
Advanced cancer patients
32
Subscale and total
Previous week
Not reported
Minimal Documentation System [42]
MIDOS
Quality of life
All domains
2000
Cancer patients
1
Total
Current day
Not reported
Missoula–VITAS Quality of Life index [78, 79]
MVQOLI
Quality of life with a focus on the terminal phase of illness
All domains
2012, revised version in 2005
Patients in the terminal phase of illness
25
Subscale and total
Not reported
Not reported
National Institutes of Health Patient-Reported Outcomes Measurement Information System [80, 81]
NIH PROMIS
Quality of life
All domains
2007
Patients and relatives
Not fixed
Subscales
Past week
Not reported
Palliative Outcome Scale [47, 8284]
POS
Core concern and palliative needs
All domains
1999
Patients with advanced cancer and their families
10
Items and total
3 days
≤ 10 min, mean completion time 6.9 min
Parenting Concerns Questionnaire [85]
PCQ
Parenting concerns
PHW, PSW, SOW
2012
Adults with cancer who have children ≤ 18 years old
15
Not reported
Not reported
Not reported
Patient Dignity Inventory [86, 87]
PDI
Dignity-related distress
All domains
2002
Patients nearing the end of life
25
Subscale and total
Not reported
Not reported
Peace, Equanimity, and Acceptance in the Cancer Experience [88]
PEACE
Acceptance and struggle with terminal illness
PSW, SPW
2008
Terminally ill patients with cancer
12
Subscale and total
Present
Not reported
Patient-Evaluated Problem Scores [71]
PEPS
Quality of life
All domains
Not reported
Patients
2 parts
Items
Not reported
3–8 min
Quality of Life and Health Questionnaire [89]
QLHQ
Health-related quality of life
PHW, PSW, SOW
Not reported
Not reported
4
Dimensions and VAS score
1 week
Not reported
Quality of life at the End of life [9092]
QUAL-E (revised version: QUAL-EC)
Quality of life and quality of care at the end of life
All domains
2002
Patients nearing the end of life
31, QUAL-EC has 17
Subscale and total
Last month and 1 week
Not reported
Quality of Life Index [48]
QLI
Cancer-specific quality of life
All domains
1981
Patients with cancer
5
Total
Not reported
Not reported
Quality of Life in Life-Threatening Illness—Patient version [93]
QOLLTI-P
Quality of life
All domains
2010
Terminally ill cancer patients
1
Content analysis of the open-ended question
2 weeks
Not reported
Resident Assessment Instrument for Palliative Care [94]
RAI-PC
Palliative care needs and patient characteristics needed to ensure the provision of the highest
Quality of life
All domains
2003
Palliative elder care
106
Domains
Last 3 days
Not reported
Rotterdam Symptom Checklist [69, 95]
RSCL
Psychological and physical distress
PHW, PSW
1982
Physically ill patients
39
Subscale and total
Past 3 days
8 min
Spine Oncology Study Group Outcomes Questionnaire [96]
SOSG-OQ
Quality of life
PHW, PSW, SOW
2010
Patients with spine metastases
27
Domains
Present
Not reported
Spiritual Attitude and Involvement List [97]
SAIL
Connectedness with oneself, with others and nature, and with the transcendent
PSW, SOW, SPW
2012
Universal, a broad group of people (not specified)
26
Subscale and total
Not reported
Not reported
Spiritual Needs Assessment for Patients [98]
SNAP
Spiritual needs
PSW, SPW, SPW
2012
Patients
23
Domains and total
Not reported
Not reported
aEach instrument measures at least two of the four HRQoL domains: PHW physical well-being, PSW psychological well-being, SOW social well-being, and SPW spiritual well-being
The number of items the measurement instruments contained ranged between one [Minimal Documentation System (MIDOS) and Quality of Life in Life-Threatening Illness-Patient version (QOLLTI-P)] and 106 [Resident Assessment Instrument for Palliative Care (RAI-PC)]. The scoring of the measurement instruments was most often calculated as a total score and a subscale score (44%) or merely subscale scores (19%) or only a total score (14%). Other measurement instruments used single-item scores (5%), or a combination of single (visual analogue scale) items, subscale, and a total score (12%). One measurement instrument (2%) used content analysis to analyse responses.
Eight measurement instruments (19%) focused on the general population or patients in general, nine (21%) were targeted at palliative patients, nine (21%) at patients with cancer, and eight (19%) at patients with advanced cancer in specific. The target population of four measurement instruments (9%) were patients with brain tumours or brain metastases in specific. The remaining measurement instruments (12%) focused on bone or spina metastases, chest malignancies in cancer patients, and anorexia or cachexia. Most measurement instruments (33%) had a recall time of one week or had no recall time (14%). Others used a recall time of three days (7%), two weeks (2%), one month (2%), or one day (2%). The completion time of seven measurement instruments (16%) was reported. The completion time ranged between three [Patient-Evaluated Problem Scores (PEPS)] to 30 min (MQOL).

Measurement properties

None of the measurement instruments were adequately assessed for all measurement properties (Table 2). Information about the content validity (94%) was most often reported and in most cases adequate (58%). Information on the construct validity was reported by the majority of the studies (70%). However, compared to other measurement properties, the construct validity was most often inadequately tested (30%). Furthermore, information about the absolute measurement error, responsiveness, and interpretability was often incomplete (6, 22, and 51% respectively) or completely missing (88, 74, and 46% respectively).
Table 2
Rating of measurement properties of the instruments
Measurement instrument
Author
Population
Sample size
Content validity
Construct validity
Internal consistency
Reliability
Absolute measurement error
Responsiveness
Interpretability
AQOL
[30]
Patients with lung cancer
106
+
+
+
0
0
0
?
BASIQ
[31]
Patients with brain metastases
40
+
?
0
?
0
?
?
CMSAS
[32]
Cancer patients, terminal cancer patients, and patients with severe cancer pain
479
?
+
?
0
0
0
0
EORTC QLQ-BM22
[33]
Cancer patients with bone metastases
170
+
0
0
0
0
0
0
[34]
Cancer patients with bone metastases
400
+
+
?
+
0
+
?
[35]
Patients with bone metastases
93
+
+
0
0
?
0
?
[36]
Patients with bone metastases
79
?
0
0
0
0
0
?
EORTC QLQ-BN20
[37]
Patients with brain metastases
99
?
?
0
0
?
0
?
EORTC QLQ-C15-PAL
[38]
Patients with advanced cancer
276
+
+
0
0
+
0
+
[39]
Patients with advanced cancer
41
+
0
0
0
0
0
0
 
[42]
Newly diagnosed cancer patients
346
+
+
?
0
0
?
?
[40]
Palliative advanced cancer patients
369
+
?
0
0
+
0
?
[41]
Pre-treatment cancer patients
3282
+
0
0
0
0
?
?
[43]
Patients treated with palliative radiotherapy
247
+
+
?
0
0
?
0
[44]
Patients with metastatic breast cancer
150
+
?
0
0
0
0
?
EORTC QLQ-C30
[45]
Patients with a variety of cancers
535
+
+
?
0
0
?
?
[46]a
Palliative cancer patients
267
?
0
0
0
0
0
0
EORTC QLQ-C30, ESAS, POS, MQOL, MSAS
[47]
Patients with advanced cancer
171
?
0
0
0
0
0
0
EORTC QLQ-OH17
[50]
Cancer patients
311
+
0
?
0
0
0
?
EORTC QLQ-SWB36
[51]
Palliative cancer patients
113
0
0
0
0
0
0
0
EORTC QLQ-30, FACT, QLI
[48]
Metastatic prostate cancer
110
?
+
?
0
0
0
?
EQ-5D
[59]
Patients who underwent surgical management for colorectal liver metastases
75
?
?
0
0
0
?
?
ESAS
[52]
Patients seen for consultation at radiotherapy
421
0
0
0
0
+
?
+
[53]
Cancer patients
233
+
?
?
?
0
0
0
[55]
Advanced cancer patients
32
?
0
0
?
?
0
0
[56]
Patients with incurable cancer
80
?
?
0
0
0
0
0
ESAS-r
[57]
Patients who had been referred to the palliative care programs
160
+
0
0
?
0
0
0
ESAS-WB
[54]
Patients with advanced cancer
213
+
0
0
0
?
0
FAACT
[60]
Cancer patients and HIV-infected individuals
213
0
?
0
0
+
0
[61]
Patients diagnosed with unresectable stage III or IV NSCLC
383
?
+
?
0
?
?
?
FACIT-G, and EORTC QLQ-C30, MIDOS
[49]
Patients receiving palliative care treatments
144
?
?
0
0
0
0
?
FACIT-Pal
[63]
Persons with advanced cancer
256
+
?
?
0
0
0
?
[64]
Advanced cancer patients
60
+
0
0
0
0
0
0
FACT-Br
[62]
Patients with brain metastases
40
+
?
?
+
0
?
?
GHQ-12
[65]
Cancer outpatients
714
?
0
?
0
0
0
0
HADS and GHQ-12
[66]
Hospice patients
79
?
?
0
0
0
?
?
HADS and RSCL
[69]
Patients with advanced breast cancer
204
?
?
0
0
0
0
?
HQLI
[67]
Patients with cancer and their primary care givers
68
?
?
0
0
0
[68]
Hospice home care patients with cancer
255
+
+
0
0
0
0
LASAs
[70]
Newly diagnosed high-grade glioma patients
205
+
?
?
0
0
0
?
M-ESAS
[58]
Hospitalized palliative cancer patients, family members, and nurses working on the palliative care unit
37
?
+
?
0
0
0
?
MQOL
[73]
Cancer patients
100
+
0
?
?
0
?
?
[75]
Advanced cancer patients
43
+
?
?
0
0
0
0
[74]
Cancer patients
254
+
+
0
0
0
?
[76]
Patients receiving palliative care
143
+
?
0
0
0
?
MQOL and PEPS
[71]
Patients with advanced cancer
36
?
?
?
0
0
0
0
MQOL-CSF
[72]
Advanced cancer patients
189
+
+
?
0
0
0
MSAS-SF
[77]
Incurable metastatic cancer
120
?
?
0
0
0
0
?
MVQOLI
[78]
Hospice patients
173
+
?
?
0
0
0
?
MVQOLI-R
[79]
Seriously ill patients
167
+
?
0
+
?
PCQ
[85]
Adults with cancer who had children ≤ 18 years old
194
+
?
+
0
0
0
?
PDI
[86]
Patients receiving palliative care
253
+
?
?
0
?
?
PEACE
[88]
Advanced cancer
160
?
?
0
0
0
0
PID
[87]
People who had an advance directive
2537
?
+
0
0
0
0
0
POS
[82]
Advanced disease population
416
0
+
0
0
0
0
[83]
Advanced cancer patients
450
+
+
?
?
0
?
?
[84]
Palliative care patients
231
+
0
0
0
0
0
0
PROMIS-Cancer scales
[80]
Patients diagnosed with primary brain tumours
10
?
0
0
0
0
0
[81]
Advanced-stage cancer
101
?
0
0
0
0
?
QLHQ
[89]
Patients with newly diagnosed advanced-stage cancer
394
?
+
0
0
0
?
?
QOLLTI-P
[93]
Palliative cancer patients
110
0
0
0
0
0
0
0
QUAL-E
[90]
Patients with stage IV cancer, CHF, COPD, and dialysis-dependent ESRD patients
200
+
0
0
0
0
?
[91]
Patients with stage IV cancer, congestive heart failure, END-stage renal disease, and chronic obstructive pulmonary disease
248
+
+
0
0
?
QUAL-EC
[92]
Advanced cancer
468
+
+
+
0
0
0
0
RAI-PC
[94]
Patients
149
?
0
0
?
0
0
0
RSCL
[95]
Cancer patients
611
+
0
+
0
0
0
0
SAIL
[97]
A student, a healthy population, a healthy interested, a curative cancer, and a palliative cancer sample
1635
+
+
+
?
0
0
0
SNAP
[98]
Cancer patients
47
+
+
?
?
0
0
0
SOSG-OQ
[96]
Patients with spine metastases, myeloma, or lymphoma
82
+
?
+
0
0
0
0
aShort version of the EORTC QLQ-C30 consisting of 12 items
Considering the available information on measurement properties, the EORTC QLQ Core 15 palliative questionnaire (QLQ-C15-PAL) showed best results. For instance, the EORTC QLQ-C15-PAL showed good content and construct validity, and the absolute measurement error and interpretability was also good. Other measurement properties had not been tested for the EORTC QLQ-C15-PAL. Equivalently, the EORTC QLQ-BM22 also appeared to have adequate psychometric properties because it appeared to have a good content and construct validity and the measurement instrument is reliable and responsive.
The ESAS showed good content validity, and the absolute measurement error and interpretability was good. However, information was lacking on other measurement properties. Other measurement instruments that had reasonable psychometric properties were the Assessment of Quality of life at the End of Life (AQOL), Quality of life at the End of life (QUAL-EC), and the Spiritual Attitude and Involvement List (SAIL). They had good content and construct validity, the internal consistency was good, but other information on measurement properties was lacking or missing.
The EORTC QLQ-C30 had undergone the most validation studies compared to other instruments but the studies did not adequately evaluate some important fundamental psychometric properties. The content validity, construct validity, and absolute measurement error of the EORTC QLQ-C30 was good. Evidence on other psychometrics characteristics of the EORTC QLQ-C30 was unclear.
The POS, QUAL-E, and MQOL were also tested by multiple studies. The POS had good content validity and construct validity, but the internal consistency was inadequate. Information on other measurement properties was lacking or missing. The QUAL-E showed a good content validity and construct validity. However, the internal consistency and reliability was inadequately tested and information on other measurement properties was incomplete. The revised version of the QUAL-E (QUAL-EC) showed improved measurement properties. The MQOL had adequate content validity, but inadequate construct validity. There was conflicting evidence regarding the internal consistency of the MQOL, and other measurement properties were inadequately tested.
There was consensus across two studies that the Hospice Quality of Life Index (HQLI) had inadequate construct validity. Results about the content validity were inconsistent, the internal consistency of the measurement instrument was good, and other psychometric information was lacking. For the EORTC QLQ-SWB36 and the QOLLTI-P, information on any of the measurement properties was absent. Other measurement instruments such as the EORTC QLQ-BN20, EQ-5D, Functional Assessment of Chronic Illness Treatment (FACIT-G), MIDOS, GHQ-12, Hospital Anxiety and Depression Scale (HADS), Rotterdam Symptom Checklist (RSCL), PEPS, Memorial Symptom Assessment Scale (MSAS-SF), and the RAI-PC were inadequately assessed because information on the measurement properties was incomplete or missing.

Discussion

Our systematic literature review identified 39 self-administered instruments measuring HRQoL mainly in patients with advanced cancer. None of the included studies reported sufficient information on psychometric properties of these measurement instruments according to the COSMIN criteria. Surprisingly, even basic psychometric properties such as construct validity and reliability were often inadequately tested. It appears that selecting an appropriate measurement instrument for testing construct validity and formulating specific hypotheses can be challenging. Furthermore, our findings show that adequate testing of responsiveness was not a priority in previous studies. PROMs are often used in clinical practice to monitor symptoms over time, it is therefore of great importance that a measurement instrument is responsive to changes. Despite incomplete information in the included studies, results of this review indicate that the EORTC QLQ-C15-PAL is an adequate instrument to measure HR in patients with advanced cancer. The EORTC QLQ-BM22, a module for patients with bone metastases, also appears to be suitable in this patient population. The EORTC QLQ-BM22 is a module and should be administered together with the EORTC QLQ-C30. Consequently, the measurement instrument is more extensive compared to the EORTC QLQ-C15-PAL. The length of a measurement instrument should be taken into account because there is little time for administration in clinical practice and a lower burden can foster compliance [99].
Due to medical advances, cancer is increasingly perceived as a chronic illness. Patients stretch the palliative phase by a longer survival and there is an increasing awareness to detect the palliative phase at an earlier stage when patients are relatively fit. The EORTC QLQ-C15-PAL may not be appropriate to administer in the beginning of the palliative phase due to its focus on symptoms at the end of life. When the EORTC QLQ-C15-PAL is administered in relatively healthy patients, a patients’ actual HRQoL may be lower than what the EORTC QLQ-C15-PAL scores indicate and the EORTC QLQ-C30 will provide a more accurate reflection of a patients’ HRQoL. The EORTC QLQ-C30 is the most commonly used disease-specific measure world-wide [100] and has been used in more than 3000 studies [101]. The routine use of the EORTC QLQ-C30 in clinical practice appears to improve physician–patient communication and HRQoL [102], but the implementation has its challenges (e.g. timing, frequency, interpretations of scores by health care professionals, and the absence of thresholds for clinical importance) [103]. Surprisingly, the present review showed that the psychometric quality of this measurement instrument has been examined many times but not adequately in patients with advanced cancer. Therefore, a thorough validation of the internal consistency, reliability, responsiveness, and interpretability of the EORTC QLQ-C30 in advanced cancer patients is advocated.
Another consideration regarding the reviewed HRQoL measurement instruments is that many of the instruments did not measure all aspects of HRQoL. Moreover, measurement instruments that only addressed one domain of HRQoL were excluded from our study. The spiritual domain is especially important at the end of life, but this domain was not often included in existing measurement instruments [28]. For instance, the EORTC QLQ-C15-PAL also did not include certain topics that appear to be relevant for patients in the end of life: Quality of care, Preparation for death, Spirituality or Transcendence [78, 90, 104107]. The EORTC QLQ-C15-PAL was derived from the EORTC QLQ-C30 and the authors confirmed that existential or spiritual issues were mentioned by health care professionals and some patients as important additional topics to the measurement instrument. Therefore, the authors suggested that the EORTC QLQ-C15-PAL is supplemented by single items, modules, or questionnaires regarding spirituality when deemed necessary. This suggestion is especially valuable for clinical practice where the spirituality domain is not easily assessed in a regular doctor’s appointment and many oncologists have not received specific training in palliative care.

Practical implications

For clinical practice it is important to monitor whether the latent construct that is being measured is represented by the selected instrument at the time of measurement and take the objective of measurement instrument into account when selecting an instrument. For instance, when interested in change over time one could argue that the EORTC QLQ-C15-PAL is less sensitive compared to the EORTC QLQ-C30 because it uses fewer items. However, sensitivity to change may also be improved by eliminating items that poorly represent the construct they were designed to measure [108]. In other words, improving measurement precision will enlarge sensitivity. Therefore, the EORTC QLQ-C15-PAL may actually be more sensitive to change over time when measuring HRQoL at the end of life in specific. However, because the EORTC QLQ-C15-PAL does not include items on spirituality the latent construct of HRQoL at the end of life is not fully measured. This reduces the sensitivity of the measurement instrument because the range where change can be detected over time is small [108]. Up to now, little is known about the measurement invariance of the QLQ-C15-PAL or EORTC QLQ-C30 in advanced cancer patients. Further validation to improve available information regarding minimal important differences and clinical relevance of differences in scores can aid interpretability in clinical practice [30]. PROMs have the potential to personalize care by identifying patients’ needs but an accurate image of the patients’ needs can only be achieved when administering the right measurement instrument at the right time for the right purposes.
This study has certain strength and limitations. It is important that the validation of instruments is performed in a consistent manner and evaluated as such. Using the COSMIN criteria in this review promoted a consistent evaluation. A limitation of this review is that there is no guarantee that our study selection procedure was sufficiently extensive. Even though references of included studies were checked, it is possible that certain validation studies were missed. Finally, this review only included measurement instruments that were not cancer site specific, meaning that the target population of the instrument was not focussed at patients with specific primary cancer sites. It is possible that for certain cancer sites, the EORTC QLQ-C15-PAL may not be the most adequate measure.
In conclusion, this review identified many self-administered instruments that measure HRQoL in patients with advanced cancer in clinical practice. Many of the existing measurement instruments have not yet been evaluated in an adequate manner, making it difficult to compare instruments. Considering the available information, the EORTC QLQ-C15-PAL and the EORTC QLQ-BM22 appeared to have best psychometric properties. However, there is no ‘one size fits all’, meaning that when selecting a measurement instrument in clinical practice it is important to take certain aspects into account such as the burden of administration and the objective of measurement (e.g. change over time). It is important that health care professionals possess up-to-date knowledge on the quality of HRQoL measurement instruments to make an adequate selection in clinical practice. For instance, health care professionals should be aware that it is important to supplement existing measurement instruments with relevant items on spirituality or preparation of dying, depending on the patients’ position within the palliative phase to accurately measure HRQoL. Validation of self-administered HRQoL measurement instruments is an important ongoing development because information on psychometric properties will enhance comparisons between instruments. This review contributes to improved clarity regarding the availability and quality of HRQoL measurement instruments for patients with advanced cancer and supports health care professionals in an adequate selection of suitable PROMs in advanced cancer patients in clinical practice. Being able to accurately and routinely measure HRQoL in patients with advanced cancer will stimulate the personalized health care approach leading to improved cancer care, clinical outcomes, and HRQoL.

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Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://​creativecommons.​org/​licenses/​by/​4.​0/​), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
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Metagegevens
Titel
Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments
Auteurs
Janneke van Roij
Heidi Fransen
Lonneke van de Poll-Franse
Myrte Zijlstra
Natasja Raijmakers
Publicatiedatum
10-02-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2018
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-1809-4

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