Quality of Life Research (2019) 28:2641–2650

https://doi.org/10.1007/s11136-019-02214-9

REVIEW

A systematic review of quality of life research in medicine and health

sciences
K. Haraldstad1   · A. Wahl2 · R. Andenæs3 · J. R. Andersen4 · M. H. Andersen2 · E. Beisland4 · C. R. Borge2 ·
E. Engebretsen2 · M. Eisemann5 · L. Halvorsrud3 · T. A. Hanssen5,6 · A. Haugstvedt4 · T. Haugland7 · V. A. Johansen4 ·
M. H. Larsen2 · L. Løvereide10 · B. Løyland3 · L. G. Kvarme3 · P. Moons8 · T. M. Norekvål9 · L. Ribu3 · G. E. Rohde1,11 ·
K. H. Urstad10 · S. Helseth1,3 on behalf of the LIVSFORSK network

Accepted: 20 May 2019 / Published online: 11 June 2019

© The Author(s) 2019

Abstract
Purpose  Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is
interpreted and defined differently within and between disciplines, including the fields of health and medicine. The aims of
this study were to systematically review the literature on QOL in medicine and health research and to describe the country
of origin, target groups, instruments, design, and conceptual issues.
Methods  A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL).
The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles pub-
lished during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate
the conceptual and methodological rigor.
Results  QOL research is international and involves a variety of target groups, research designs, and QOL measures. Accord-
ing to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL
from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason
for choosing the instruments used; and (iii) aggregating the results from multiple items.
Conclusion  QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient
groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL
research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.

Keywords  Quality of life · Health-related quality of life · Systematic review

Introduction research has focused on patients’ QOL, and the use of QOL
assessments has increased [2].
Quality of life (QOL) has become established as a significant Understanding QOL is important for improving symptom
concept and target for research and practice in the fields of relief, care, and rehabilitation of patients. Problems revealed
health and medicine [1]. Traditionally, biomedical and not by patients’ self-reported QOL may lead to modifications
QOL outcomes have been the principal endpoints in medical and improvement in treatment and care or may show that
and health research. However, during the past decades, more some therapies offer little benefit. QOL is also used to iden-
tify the range of problems that can affect patients. This kind
of information can be communicated to future patients to
help them anticipate and understand the consequences of
Electronic supplementary material  The online version of
this article (doi:https​://doi.org/10.1007/s1113​6-019-02214​-9) their illness and its treatment. In addition, cured patients
contains supplementary material, which is available to authorized and long-term survivors may have continuing problems
users. long after their treatment is completed. These late problems
may be overlooked without QOL assessment. QOL is also
* K. Haraldstad
[email protected] important for medical decision-making because QOL is a
predictor of treatment success and is therefore of prognostic
Extended author information available on the last page of the article

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2642 Quality of Life Research (2019) 28:2641–2650

importance. For instance, QOL has been shown to be a describe the country of origin, target groups, instruments,
strong predictor of survival [1]. This prognostic ability sug- design, and conceptual issues in the current research.
gests that there is a need for routine assessment of QOL in
clinical trials [1].
Despite the importance of QOL in health and medicine, Methods
there is a continuing conceptual and methodological debate
about the meaning of QOL and about what should be meas- The review was designed as a systematic review with a
ured. There is no uniform definition of the concept; however, short time frame, which was limited to one random week
The World Health Organization (WHO) outlines one defini- (a “snapshot”). Because a high number of QOL articles
tion of QOL; “An individual’s perception of their position are published every year, it is not possible to review all.
in the in the life in the context of the culture in which they Therefore, a random selection can give a good picture of
live and in relation to their goals, expectations, standards QOL research. We used the PRISMA (Preferred Reporting
and concerns” [3]. Items for Systematic Reviews and Meta-Analyses Statement)
Moreover, the term health-related quality of life checklist to ensure rigor in conducting and the reporting of
(HRQOL) is often described as: “A term referring to the this systematic review [7]. The checklist comprises 27 items
health aspects of quality of life, generally considered to including those deemed essential for transparent reporting
reflect the impact of disease and treatment on disability and of systematic reviews. To evaluate the conceptual and meth-
daily functioning; it has also been considered to reflect the odological rigor, we used the same ten predefined criteria
impact of perceived health on an individual’s ability to live developed by Gill and Feinstein [5] and refined by Moons
a fulfilling life. However, more specifically HRQOL is a et al. [8].
measure of the value assigned to duration of life as modified
by impairments, functional states, perceptions and opportu-
nities, as influenced by disease, injury, treatment and policy” Data search
[4].
QOL is a complex concept that is interpreted and defined Systematic literature searches for publications referring to
in a number of ways within and between various disciplines. QOL or health-related quality of life (HRQOL) were con-
As a consequence, many different instruments are now used ducted in collaboration with a trained librarian. To ensure
to assess QOL. These instruments were developed based broad coverage, the search term used was “Quality of life
mainly on empirical considerations and have not been devel- OR Health-related quality of life.” We searched for pub-
oped from a definition or a conceptual model. Consequently, lications published during a randomly chosen week from
there is a lack of conceptual clarity about what QOL means November 19–26, 2016. The actual search was performed
and measures, which may pose a threat to the validity of on November 26, and we searched for “the last 7 days” in
QOL research [1]. the databases Scopus, which covers Embase and MEDLINE,
Several conceptual and methodological analyses of QOL CINAHL, and PsycINFO. The Scopus database allowed us
have been published [1, 5–8]. For instance, with the aim to search for specific dates. The search resulted in 364 pub-
of determining the range of conceptual and methodological lications. To ensure that this week was not unique in terms
rigor of studies and of identifying temporal trends, Bratt and of the number of articles published, we performed the same
Moons [7] conducted a systematic literature review of all search strategy using the same databases for a random week
empirical studies of QOL in patients with congenital heart 2 months later, in January 2017, which yielded a similar
disease published since 1974. They applied ten review crite- number of publications (n = 383).
ria that had been previously developed by Gill and Feinstein
in 1994 [5] and further refined by Moons et al. in 2004 [8]. Eligibility criteria
Bratt and Moons found slight but nonsignificant temporal
improvements in conceptual and methodological rigor and The inclusion and exclusion criteria were developed a priori.
in the use of assessment methods. However, most of the A data extraction form was created before the review to iden-
papers had substantial conceptual and methodological defi- tify the key characteristics of studies that met the criteria
cits. Despite 40 years of research on QOL in people with for inclusion. The main inclusion criteria were that QOL
congenital heart disease, the review identified the prevalence or HRQOL should be mentioned in the title or abstract and
of major weaknesses in the methodological rigor. We rea- that the included studies should be peer-reviewed original
soned that this might also be the case in research on QOL research publications. The exclusion criteria were: confer-
in general medical and health research. Therefore, the aim ence abstract, non-English publication, editorial, opinion
of the present study was to perform a systematic review of article, scientific statement, guideline, protocol, or review
QOL research in the fields of medicine and health, and to article.

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Quality of Life Research (2019) 28:2641–2650 2643

Data selection process Review criteria

The literature searches resulted in 364 publications. After In accordance with the aim of the study, we reviewed the
removing duplicates, 349 papers were eligible for screening. included QOL publications in terms of country, study design,
Twenty-four QOL researchers participated in the screening pro- number of participants, age groups (children or adults), and
cess, and all papers were screened independently by title and QOL instrument(s) used. In addition, we reviewed the pub-
abstract by two reviewers, who worked in pairs. In total, 186 lications regarding how they dealt with conceptual issues
publications were excluded during the screening process. The and methodology [6] according to the criteria presented in
remaining 163 publications were included, read in full, and then Table 5.
independently reviewed and scored by the two reviewers before
agreeing in a consensus meeting. In case of disagreement, con-
sensus was achieved by three main investigators, one of whom Results
was involved in the original review. A flowchart detailing the
study selection and inclusion is shown in Fig. 1 (An online Description of QOL publications
supplement with all references is included in the appendix).
Data extraction forms to register the key characteristics Search results
of the studies were used, and the following variables were
registered: country, study design, number of participants, The studies included in this review all used QOL and/or
age groups (children or adults), and QOL instrument(s) used. HRQOL as a concept. Of the included studies, 60 were from

Records idenfied through database

searching the last 7 days from
Identification

19.11.2016-26.11.2016
Scopus: medline, psychinfo, embase,
CINAHL ( n= 364)

Records aer duplicates removed Records excluded

(n = 349) (n =15)
Screening

Records screened Arcles excluded, with

(n = 349) reason: Conference abstract,
non-English, editorials,
opinion arcles, guidelines,
review arcles, protocols,
QOL or HRQoL nor
menoned in tle or abstract
Eligibility

Full-text arcles assessed for eligibility (n =186)

(n = 163)
Included

Studies included
(n =163)

Fig. 1  Flow chart of inclusion. Source: Reproduced From Moher D, The PRISMA Statement. PLoS Med 6(7): e1000097. https​://doi.
Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Pre- org/10.1371/journ​al.pmed1​00009​7. For more information, visit https​
ferred Reporting Items for Systematic Reviews and Meta-Analyses: ://www.prism​a-state​ment.org.

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2644 Quality of Life Research (2019) 28:2641–2650

Table 1  Country where the study was conducted In 20 of the studies, the sample was children and/or ado-
Europe N lescents. The other 143 studies included adults. The most
prevalent patient groups studied were those with cancer
Netherlands 9 (34 studies), mental illness (12 studies), heart disease (11
Germany 8 studies), gastrointestinal disease (11 studies), and chronic
England, Spain, 7,7 obstructive pulmonary disease (COPD) or asthma (seven
Turkey, Italy, France 5,5,5 studies). Seven studies included community samples or
Slovenia 3 normal populations, and seven studies included older adults
Portugal, Poland 2,2 (Table 3).
Norway, Ireland, Switzerland, Denmark, Romania, 1,1,1,1,1,1,1 The 163 papers reviewed used 51 different questionnaires,
Belgium, Croatia
which were both generic and disease specific. Generic QOL
North America
questionnaires were used in 66 of the studies of adults. The
 USA 43
generic instruments most commonly used were the Short
 Canada 4
Form-36 (SF-36), EQ 5D, EORTC QLQ C-30, WHOQOL-
Asia
BREF, and SF-12. Child-specific instruments were used in
 China 18
most of the studies on children, although four studies used
 Korea 5
questionnaires for adults. Of the child-specific instruments
 India, Japan 4, 4
used, 12 were generic and four were disease specific. The
 Iran, Indonesia, Pakistan, Taiwan 3,2,2
PedsQL was used most frequently. An overview of the
 Singapore, Israel, Taiwan 1,1,1
instruments used is given in Table 4.
Oceania
 Australia 7
Evaluation according to the criteria
South America
 Brasil 5
The evaluation of methodological and conceptual quality
Africa
or rigor according to the criteria of Gill and Feinstein [5,
 Uganda, Nigeria, South-Africa 1,1,1
8] (Table 5) revealed that 22 (13%) of the 163 studies pro-
vided a definition of the concept QOL (criterion 1). In 57 of
the papers (35%), the investigators stated the domains they
Table 2  Study design measured as part of QOL (criterion 2). In 41 of the papers
Design N (%)
(25%), the investigators gave a specific reason for the choice
of instrument to measure QOL (criterion 3). In 88 (53%) of
RCT/experimental 61 (37.6) the studies, the investigators had aggregated results from
Cross-sectional/descriptive 50 (31.6) multiple items, domains, or instruments into a single com-
Cohort/prospective/longitudinal 37 (22.1) posite score for QOL (criterion 4). However, few studies
Methodological 7 (4.1) (9%) fulfilled criterion 5, concerning whether patients were
Case–control 6 (3.6) asked to give their own global rating of QOL by a single
Mixed methods 1 (0.6) item at the end of the questionnaire.
Qualitative 1 (0.6) For criterion 6, in 11 (6%) of the included articles, QOL
was distinguished from HRQOL. Evaluation of the studies
showed that criteria 7–10 were not fulfilled; none of the
Europe and had been conducted in 17 different European studies provided an option for the participants to select addi-
countries. The Netherlands had the most with nine studies, tional items that are important to them. However, in one
and Spain and Germany had eight studies each; 47 studies study, the respondents could indicate which of the given
were from North America (USA and Canada), and 41 were items are personally important to them, but the importance
from Asian countries (Table 1). rates were not incorporated into the overall score.
Sixty-one (38%) of the included studies had an experi-
mental design involving either a randomized controlled trial
(RCT) design or a quasi-experimental design. Fifty studies Discussion
had a cross-sectional or descriptive design, and 37 had a
cohort or longitudinal design. Six of the studies had a case- The findings of this systematic snapshot review show that
control design, seven studies were methodological or vali- QOL research is truly international, involves a variety of
dation studies, one study had a qualitative design, and one target groups, and uses different research designs and many
study had a mixed-methods design (Table 2). types of QOL measures. Moreover, few of the included

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Table 3  Number of studies Patient groups Adults Children Total

related to patient groups,
N = 163 Cancer 32 2 34
Mental illness 11 1 12
Heart disease 11 – 11
Gastrointestinal disease 10 1 11
Kidney/renal 9 1 10
Community sample/normal population 6 1 7
Chronic obstructive pulmonary disease/asthma 7 – 7
Orthopedic 6 2 7
Elderly 7 – 7
Hemophilia 4 1 5
Gynecological disease 4 – 4
Obesity 3 2 5
Pain 4 – 4
Epilepsy/cerebral paresis 2 2 4
Multiple sclerosis 4 – 4
Diabetes 2 1 3
Psoriasis 3 – 3
Developmental problems – 2 2
Allergy 2
Cystic fibrosis 1 1 2
Eye disease 2 2
Fibromyalgia 2 2
Cosmetics 2 – 2
Tinnitus, oral health, trans gender, hearing loss, HIV, 1,1,1,1,1,1 10
myositis, nasal septum, brain injury, eating disorder 1,1,1,1
Cleft lip 1 1
Myelomeningocele 1 1
Preterm 1 1

studies provided a definition of the concept of QOL, and manifestation from the cross-cultural context. Our snapshot
most articles had a low-quality score according to the crite- review suggests that the situation is changing and that QOL
ria of Gill and Feinstein [5, 8]. research is expanding in China.
However, some trends were apparent. Studies of QOL The studies included in our review show that QOL
have been conducted in all parts of the world, but the USA research has involved primarily patient groups with speci-
has the most published articles, followed by China. Several fied diseases, especially different kinds of cancer and other
European countries follow; and if taken as a whole, Europe long-term diseases. Improved medical treatment means that
has produced more studies than the USA. Only three studies more people are living with disease and chronic conditions.
have been published from African countries. These trends This has led to an increasing interest in QOL research by
suggest that QOL research is being conducted mainly in focusing not only on treatment options and effect, but also on
developed countries. A Chinese review of QOL studies the effects on people’s lives. Fewer studies have focused on
from 2009 commented that such studies in China were rare community samples and children. Only 12% of the included
and that the research was conducted predominantly in the studies involved children or adolescents. There are several
West [9]. Shek [9] argued that this can be explained by the possible explanations for the focus on adults, primarily
socioeconomic and political circumstances, in addition to that the prevalence of disease and long-term conditions is
cultural differences, such as different sets of values and much lower in children than in adults. There are also chal-
philosophical foundations. It is possible that the concept of lenges in the assessment of QOL in children and adoles-
QOL is understood differently in different cultures, and the cents, including conceptual, methodological, and practical
relevance from the cross-cultural context is unclear. There- aspects. Ravens-Sieberer et al. [10] identified issues such as
fore, it is of interest to conduct more QOL studies in Asian the relevance and age-appropriate tools to measure QOL in
and other non-Western cultures to understand QOL and its children, challenges in using proxy-rated QOL measures in

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Table 4  Quality of life Instruments Number

instruments used (N = 163) of studies

Generic
 Short form SF-36 21
 EQ-5D 16
 WHOQOL-BREF 7
 Short form SF-12 5
 Cantrills ladder 2
 Satisfaction with Life Scale (SWLS) 2
Disease specific
 EORTC QLQ C-30 15
 Gastrointestinal QOL index (GIQLI) 4
 Asthma Quality of Life Questionnaire (AQLQ) 3
 Dermatology Life Quality score, (DLQI) 3
 Stroke Specific QOL Scale 2
 McGill QOL Questionnaire 2
 The Haemo-QOL Questionnaire 2
 Patient outcome measurement information system (PROMIS) 2
 FACT-L 2
 National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25) 1
 Sexual Function Questionnaire-12 (PISQ-12) 1
 DLQ1 1
 QLESQ-SF 1
 Melasma QOL questionnaire 1
 Owestry dis index (ODI) 1
 Inflam. Bowel Disease Questionnaire (IBDQ) 1
 MG-QOL 15 1
 NOSE nasal obstruction symptom evaluation 1
 The ten-item Lehman’s quality of life (QOL) measure 1
 Celiac dietary, CD quality of life 1
 Epilepsy and Learning Disabilities Quality of Life Scale (ELDQOL) 1
 Nutri- QOL 1
 The Hand-Foot Skin Reaction QOL Questionnaire (HF-QOL-K) 1
 Food Allergy Quality of Life Parental Burden 1
 Seattle Angina Questionnaire (SAQ-QOL) 1
 FertiQOL 1
 QOL Alzheimer’s Disease Scale 1
 Patient Health Questionnaire-2 score (PHQ2) 1
 Incontinence Impact Questionnaire Short Form (31Q, IIQ-7) 1
 Glaucoma-specific preference-based HRQOL instrument 1
 CAS 20 1
 CASP-12 1
 Dartmount coopertive functional assessment charts (COOP) 1
 Stoma-QOL Questionnaire 1
 Kansas City Cardiomyopathy Questionnaire (KCCQ) 1
Children
 Generic
  PedsQl 5
  Child Health Questionnaire (CHQ) 2
  KINDL 2
  KIDSCREEN 27 1
  DISABKIDS HRQOL 1

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Table 4  (continued) Instruments Number

of studies

  Preschool Children’s Quality of Life Questionnaire (TAPQOL) 1

 Disease specific
  PedsFact-BrS 1
  Questionnaire QOL fécal Continence in Children (QQVCFCA) 1
  Child oral health impact profile-(COHIP) 1
  Cystic Fibrosis QOL Questionnaire-Revised 1

Table 5  Evaluation of Criteria N %
methodological and conceptual
rigor according to the criteria 1. Did the investigator give a definition of quality of life? 22 13
from Gill and Feinstein
2. Did the investigators state the domains they will measure as components of quality of life? 57 34
(N = 163)
3. Did the investigators give reasons for choosing the instrument they used? 41 25
4. Did the investigator aggregate results from multiple items, domains or instruments into a 88 53
single composite score for quality of life?
5. Were patients asked to give their own global rating for quality of life? 16 9
6. Was overall quality of life distinguished from health-related quality of life? 11 6
7. Were the patients invited to supplement the items listed in the instruments offered by the 0
investigators that they considered relevant for their quality of life?
8. If so, were these supplemental items incorporated into the final rating? 0
9. Were patients allowed to indicate which items were personally important to them? 1 0.6
10. If so, were the importance ratings incorporated into the final rating? 0

children, and cross-cultural comparison of the dimensions quantitative and there are few qualitative studies, although
of QOL. during the past years, an increasing number of qualitative
The research designs of the included studies included QOL studies have added an important dimension to QOL
descriptive, longitudinal, and experimental designs. QOL research [12]. However, because of the few qualitative stud-
is increasingly used as an endpoint in clinical trials, often as ies and the limited search (1 week), we have not been able
part of an evaluation of different treatment or intervention to identify whether the number of qualitative studies has
outcomes. It is noteworthy that many of the interventions increased in recent years.
described in the included studies are not intended to increase QOL measures can be categorized into three subtypes
QOL and therefore, QOL appears as an important, but sec- according to the type of report (self-report vs. proxy report),
ondary, outcome. Including QOL as a secondary outcome scores (single indicator, profile, or battery approach), and
emphasizes the importance of such issues when assessing population (generic vs. condition specific), which allows
the benefits of different treatment options; that is, research- for classification based on the scope and applicability of
ers are interested in both the medical outcomes as well as the study [13]. This review found that a diverse number
the effects of treatment on patients’ lives. This can provide of different measures are used to evaluate QOL. Most of
information to clinicians and policymakers about how best the studies included a condition-specific measure, which is
to prioritize and allocate resources within health care. not surprising given that various disease populations were
One of the critiques of QOL research is the lack of con- the target groups in most of the included studies. Generic
ceptual clarity and a uniform definition of QOL [6]. Using measures of QOL are used either alone or in combination
a clearer and definitive definition of QOL research and with a condition-specific instrument. Using both generic and
research that includes QOL measures may increase the con- condition-specific instruments has an advantage, because
ceptual understanding, which will help researchers plan and generic instruments can be used to compare QOL between
conduct more rigorous QOL research studies [6]. health conditions, and condition-specific measures specifi-
Only one study in the review had a mixed-methods cally address the health condition and appear to be more
design, and only one was purely qualitative. Mixed methods clinically relevant [14]. The choice of the type of measure
involve the collection and analysis of both quantitative and clearly depends on the aim(s) of the study. The findings of
qualitative data [11]. Traditionally, QOL research has been our review indicate that a measure seems to exist for every

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2648 Quality of Life Research (2019) 28:2641–2650

disease. The challenge is to find instruments that can be in empirical research deepens understanding and can help to
widely used but have good psychometric properties for every establish new knowledge about QOL [22]. Theory is a pre-
health condition. The generic measures used in the included supposition for the ability to compare results from different
studies are well known and widely used and have been well studies and is important in the development and testing of
validated across cultures. Examples are the SF-36, EQ-5D, QOL measures. Basing research on theory also improves the
and WHOQOL-BREF for adults, and Kidscreen, CHQ, and conceptual clarity and therefore the validity of the measures.
PedsQL for children. The application of theoretical thinking leads to hypothesis
QOL research has been criticized for a lack of conceptual generation, which makes research cumulative instead of
clarity and clear definition of QOL [8, 15–17]. In this snap- atomistic. However, theoretical thinking needs to be inter-
shot review, most articles had a low-quality score according woven in all stages of research. Its absence might engender a
to the criteria of Gill and Feinstein [5, 8]. Surprisingly, only static concept of QOL by continuing to test the same param-
13% of the articles provided a definition of the concept of eters. Both qualitative and theoretical approaches to QOL
QOL. This is lower than that reported in the survey of Bratt are needed to open up the concept for discussion and change.
and Moons [7], which found that 27% of the studies of con-
genital health disease from 2005 to 2014 provided a defini-
tion of QOL. A definition of QOL should state clearly what Strengths and limitations
the authors mean by QOL and how it is related to other con-
cepts [18]. The criteria fulfilled most frequently in our study One strength of this snapshot is that we searched widely in
were stating the domains of QOL to be measured, giving databases: Scopus, which covers Embase and MEDLINE,
a reason for choosing the instruments used, and aggregat- CINAHL, and PsycINFO. Another strength is that the selec-
ing the results from multiple items. This is consistent with tion process and review were performed independently by
the results of Bratt and Moons [7]. It is important to give pairs of researchers and that agreement was reached in a
the reason for choosing an instrument. Valid measurements consensus meeting.
methods require that the instruments employed are suitable However, the present study has some limitations. First,
for the intended task [7]. Our results showed that in 25% of this study was designed as a snapshot and aimed to analyze
the studies, the authors gave reasons for choosing an instru- and describe QOL research in one random week. Admit-
ment. For instance, pointed Hubert-Dibon et al. [17] out that tedly, a snapshot of a single week might not be representa-
they chose the KIDSCREEN-27questionnaire because the tive of QOL research in general. However, a large number of
instrument provides a broad perspective on understanding QOL studies are published every year. A random selection
of HRQOL, it includes five dimensions and requires only can give a good picture of QOL research. To ensure that
10–15 min to complete, but still permits evaluation of the this week was not unique in terms of the number of articles
main components of HRQOL [17]. However, few studies published, we performed the same search strategy of the
have distinguished QOL from HRQOL, only 6% of the arti- same databases for one random week 2 months later, and
cles found in our study did so. According to Moons et al. this search yielded nearly the same number of articles and
[19], it is important to report and state clearly whether over- showed the same trends in the type of articles, countries of
all QOL or HRQOL has been measured. The majority of the origin, and study design. Second, searches were limited to
included studies measured HRQOL, and only few articles English language only. It is possible that similar studies may
distinguished between the terms. Cuerda et al. [20] argued have been published in other languages than English.
for instance that they preferred to study HRQOL because it Third, the criteria used were developed in 1994, and one
is a dynamic variable, which evaluates the subjective influ- may question whether these remain relevant in 2018. How-
ence of health status, health care, and preventive health ever, the criteria were refined by Moons in 2004 and, to our
activities [20]. The terms health, HRQOL, and QOL are knowledge, no other criteria for assessing the conceptual
often used interchangeably in the literature. However, these rigor in QOL studies have been published.
terms have different definitions and intended use, and it is
problematic that some researchers fail to distinguish between
them. Further, it is debated whether many of the instruments Conclusion
used to measure HRQOL actually measure self-perceived
health status and that the term (HR)QOL is unjustified [21]. Knowledge about QOL is important for understanding the
Based on our evaluation of methodological and concep- consequences of illness and treatment, and for medical
tual clarity, we conclude that most QOL studies in health and decision-making across age groups and culture. QOL is an
medicine have conceptual and methodological limitations. important endpoint in medical and health research, and QOL
In general, theories and theoretical frameworks improve the research involves a variety of target groups and research
understanding of QOL. The use of theoretical perspectives designs. However, based on the current evaluation of the

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Quality of Life Research (2019) 28:2641–2650 2649

methodological and conceptual clarity of QOL research, we 9. Shek, D. T. L. (2010). Introduction: Quality of life of Chinese
conclude that many QOL studies in health and medicine people in a changing world. Social Indicators Research, 95(3),
357–361. https​://doi.org/10.1007/s1120​5-009-9534-6.
have conceptual and methodological challenges. There is a 10. Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel,
need for improvements in this field, and researchers should J., & Bullinger, M. (2006). Generic health-related quality-of-life
pay closer attention to methodological and conceptual issues assessment in children and adolescents: methodological consid-
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2650 Quality of Life Research (2019) 28:2641–2650

Affiliations

K. Haraldstad1   · A. Wahl2 · R. Andenæs3 · J. R. Andersen4 · M. H. Andersen2 · E. Beisland4 · C. R. Borge2 ·

E. Engebretsen2 · M. Eisemann5 · L. Halvorsrud3 · T. A. Hanssen5,6 · A. Haugstvedt4 · T. Haugland7 · V. A. Johansen4 ·
M. H. Larsen2 · L. Løvereide10 · B. Løyland3 · L. G. Kvarme3 · P. Moons8 · T. M. Norekvål9 · L. Ribu3 · G. E. Rohde1,11 ·
K. H. Urstad10 · S. Helseth1,3 on behalf of the LIVSFORSK network

A. Wahl T. M. Norekvål
[email protected] tone.merete.norekval@helse‑bergen.no
R. Andenæs L. Ribu
[email protected] [email protected]
J. R. Andersen G. E. Rohde
[email protected] [email protected]
M. H. Andersen K. H. Urstad
manderse@ous‑hf.no [email protected]
E. Beisland S. Helseth
[email protected] [email protected]
C. R. Borge 1
Faculty of Health‑ and Sport Sciences, University of Agder,
[email protected]; [email protected]
P.O Box 422, 4604 Kristiansand, Norway
E. Engebretsen 2
Department of Health Sciences, University of Oslo,
[email protected]
P.O. Box 1084, Blindern, 0317 Oslo, Norway
M. Eisemann 3
Faculty of Health, OsloMet – Oslo Metropolitan University,
[email protected]
St. Olavs plass, P.O. Box 4, 0130 Oslo, Norway
L. Halvorsrud 4
Department of Health and Caring Sciences, Western Norway
[email protected]
University of Applied Sciences (HVL), P.O. Box 7030,
T. A. Hanssen 5020 Bergen, Norway
[email protected] 5
Faculty of Health Sciences, UiT The Arctic University
A. Haugstvedt of Norway, P.O. Box 6050, Langnes, Tromsø, Norway
[email protected] 6
University Hospital of North Norway, P.O. Box 100,
T. Haugland 9038 Tromsø, Norway
[email protected] 7
Faculty of Health Studies, VID Specialized University,
V. A. Johansen Mailbox 184, Vinderen, NO 0319, Norway
venke.agnes.johansen@helse‑bergen.no 8
Department of Public Health and Primary Care, University
M. H. Larsen of Leuven, P.O. Box 7001, Kapucijnenvoer, 3000 Leuven,
lisbeth.gravdal‑[email protected] Belgium
9
L. Løvereide Haukeland University Hospital, P.O. Box 1400, 5021 Bergen,
[email protected] Norway
10
B. Løyland Faculty of Health Sciences, University of Stavanger,
[email protected] P.O. Box 8600, Forus, Norway
11
L. G. Kvarme Department of Clinical Research, SSHF, P.O. Box 416,
[email protected] 4604 Kristiansand, Norway
P. Moons
[email protected]

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