General trend
The number of articles about HRQoL and citations over 2000–2019 were counted and displayed in Fig. 2, Fig. 2a is the trend of the number of articles and the annual growth rate, Fig. 2b is the trend of annual Total Citations (TA) and annual Citations Per Article (CPA). The Fig. 2a shows that the number of HRQoL studies has increased continuously over the years, the annual number of HRQoL articles increased from 337 in 2000 to 2294 in 2019. The growth rate fluctuated greatly in the twenty years, but overall, the growth rate in the last six-year period was smaller and more stable than before. From Fig. 2b, the trend of TA had a turning point in the year 2007, it rose in undulation before 2007 and then showed a downward trend to 2019. As for the CPA, generally, it had been a downward trend over the twenty years, the higher citations per article were found in the period between 2000 and 2003. The most cited ten articles are listed in Table 1. As can be seen, most of them were about the measurements or general law related to HRQoL (Rank1, 2, 3, 6, 7, 8, 9), and other articles were about HRQoL of certain groups (Rank4, 5, 10). We also calculated the average number of authors per article (AAP), the average number of references cited per article (ARP) and the average number of pages per article (APP) by published years to see how the study changed over the time. These three indicators increased slightly during this period, AAP increased from 4.64 in 2000 to 8.5 in 2019, ARP increased from 32.6 in 2000 to 38.89 in 2019, and APP increased from 8.42 in 2000 to 9.29 in 2019.
Table 1
Top 10 most-cited articles (with citations ≥ 900)
Article title
|
TC(R)
|
PY
|
Publication name
|
PedsQL (TM) 4.0: Reliability and validity of the pediatric quality of life Inventory (TM) Version 4.0 generic core scales in healthy and patient populations
|
2313(1)
|
2001
|
Medical Care
|
Interpretation of changes in health-related quality of life - The remarkable universality of half a standard deviation
|
2212(2)
|
2003
|
Medical Care
|
Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)
|
1628(3)
|
2011
|
Quality of Life Research
|
Quality of life and satisfaction with outcome among prostate-cancer survivors
|
1450(4)
|
2008
|
New England Journal of Medicine
|
The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcome
|
1190(5)
|
2010
|
Journal of Clinical Epidemiology
|
Development and first validation of the COPD Assessment Test
|
1123(6)
|
2009
|
European Respiratory Journal
|
The PedsQL (TM) 4.0 as a pediatric population health measure: Feasibility, reliability, and validity
|
1117(7)
|
2003
|
Ambulatory Pediatrics
|
The Patient-Reported Outcome Measurement Information System (PROMIS) progress of an NIH roadmap cooperative group during its first two years
|
1069(8)
|
2007
|
Medical Care
|
The PHQ-8 as a measure of current depression in the general population
|
1057(9)
|
2009
|
Journal of Affective Disorders
|
Health-related quality of life of severely obese children and adolescents
|
945(10)
|
2003
|
JAMA-Journal of the American Medical Association
|
TC(R): total citations count (rank); PY: published year |
Geography and collaboration Analysis
In the collected data, 38 articles lacked the information of authors’ addresses, hence 25,081 articles were used to the geographic analysis. We divided every five years as a period, the background corresponded to each country's Gross Domestic Product (GDP) per capita in the last year of each period. Furthermore, the authors' addresses are often the institutions to which they belong, so every dot represented a research institution to which the author belongs, as shown in Fig. 3a-3d. In the first period (2000–2004), the main HRQoL research areas were distributed across North America and Europe. In the second period (2005–2009), besides North America and Europe, HRQoL research boomed in eastern Asia, southern Brazil and Turkey. In the next period (2010–2014), China and India became newly-active areas in HRQoL research, and there’s a small cluster of dots in eastern Australia, Western Asia and Africa. In the last period (2015–2019), South America and Africa became more active than previous periods, HRQoL had ushered in a vigorous development worldwide in this period, but the Central Asia and Russia still showed a low interest in HRQoL research, and clusters in Africa are more scattered, these phenomena illustrate that HRQoL's research interest varies among regions around the world. What’s more, the research interest in HRQoL may be related to regional GDP per capita: regions with high GDP per capita are the leading areas for research, like South America and Europe; but regions where GDP per capita was under 500 USD had few institutes interested in HRQoL, such as some areas in Africa.
At the country/territory level, there were 145 countries/territories participating in HRQoL research. The top 20 countries/territories with articles are listed in Table 3. USA was the leading country in HRQoL research, published 30.37% of all articles, followed by UK(12.4%), Germany(9.22%) and Canada(8.04%). In addition, international co-operations between different countries varied significantly. The USA, Germany, China, Netherlands, Sweden, Spain, Japan, Brazil, Norway, South Korea, Finland and Turkey preferred to give priority to independent research, the number of internationally-collaborative articles (CA) were all less than their number of single country articles (SA); UK, Canada, Australia, Italy, France, Switzerland, Denmark and Belgium seemed more inclined to cooperation.
Table 3
Top 20 most productive countries in HRQoL research
Country
|
TA (%)
|
SA (%)
|
CA (%)
|
SA/CA
|
USA
|
7628(30.37)
|
4945(64.83)
|
2683(35.17)
|
1.84
|
UK
|
3114(12.4)
|
1257(40.37)
|
1857(59.63)
|
0.68
|
Germany
|
2315(9.22)
|
1258(54.34)
|
1057(45.66)
|
1.19
|
Canada
|
2019(8.04)
|
893(44.23)
|
1126(55.77)
|
0.79
|
Netherlands
|
1911(7.61)
|
1133(59.29)
|
778(40.71)
|
1.46
|
Sweden
|
1541(6.13)
|
864(56.07)
|
677(43.93)
|
1.28
|
Spain
|
1537(6.12)
|
911(59.27)
|
626(40.73)
|
1.46
|
Australia
|
1380(5.49)
|
636(46.09)
|
744(53.91)
|
0.85
|
China
|
1242(4.94)
|
812(65.38)
|
430(34.62)
|
1.89
|
Italy
|
1148(4.57)
|
568(49.48)
|
580(50.52)
|
0.98
|
France
|
1006(4)
|
390(38.77)
|
616(61.23)
|
0.63
|
Japan
|
858(3.42)
|
643(74.94)
|
215(25.06)
|
2.99
|
Brazil
|
845(3.36)
|
556(65.8)
|
289(34.2)
|
1.92
|
Norway
|
701(2.79)
|
398(56.78)
|
303(43.94)
|
1.31
|
Switzerland
|
590(2.35)
|
131(22.2)
|
459(77.8)
|
0.29
|
South Korea
|
582(2.32)
|
447(76.8)
|
135(23.2)
|
3.31
|
Denmark
|
572(2.28)
|
230(40.21)
|
342(59.79)
|
0.67
|
Finland
|
559(2.23)
|
408(72.99)
|
151(27.01)
|
2.70
|
Belgium
|
479(1.91)
|
79(16.49)
|
400(83.51)
|
0.20
|
Turkey
|
470(1.87)
|
391(83.19)
|
79(16.81)
|
4.95
|
TA (%): the number of articles published by each country (percentage of all articles); SA (%): the number of single-country articles (percentage of TA); CA (%): the number of internationally-collaborative articles (percentage of TA) |
At research institution level, we calculated the h-index in HRQoL research of each institution, the top 20 influential institutions are listed in Table 4, according to the rank of h-index. Among the top 20 institutions, 12 were in the USA, 5 were in Canada, 3 in Netherlands, and 1 in each of Sweden, Finland and Norway. University of California, Los Angeles (UCLA) has the highest h-index (63) in HRQoL research, followed by University of Toronto, Canada (59); Harvard University, USA (57) and McMaster University, Canada (56). The CA of these 20 institutions were all exceeded their CA. The CA of University of Oslo, Norway and Harvard University, USA reached more than 28 times of their SA, and the CA of the institution with the smallest gap also reached 4.9 times of the SA (University of North Carolina, USA). These results indicated that cooperative study between institutions was the main pattern in influential HRQoL research.
Furthermore, we analyzed the inter-institutional collaboration for the top 20 highest h-index institutions in HRQoL research (Fig 4). The sectors differ in color and area: a specific color corresponds to an institution, whereas its area is proportional to the number of articles from that country. Moreover, the thickness of lines between sectors represents the number of collaborative articles between institutions, it also revealed the strength of cooperation among these 20 influential institutions. As can be seen, these institutions preferred to cooperate with their domestic institutions to conduct HRQoL research. For example, University of Amsterdam, Netherlands cooperated most with University of Groningen, Netherlands and Leiden University, Netherlands. The same was true for institutions in the United States and Canada, cooperation strength between domestic institutions was much greater than that of international institutions.
Table 4
Top 20 highest h-index institutions in HRQoL research
Institution
|
h-Index(R)
|
TA (%)
|
SA (%)
|
CA (%)
|
University of California, Los Angeles (UCLA),USA
|
63(1)
|
436(1.74)
|
39(8.94)
|
397(91.06)
|
University of Toronto(UT), Canada
|
59(2)
|
543(2.16)
|
33(6.08)
|
510(93.92)
|
Harvard University(HU), USA
|
57(3)
|
298(1.19)
|
10(3.36)
|
288(96.64)
|
McMaster University(MMU), Canada
|
56(4)
|
312(1.24)
|
18(5.77)
|
294(94.23)
|
University of Washington(UW), USA
|
51(5)
|
308(1.23)
|
23(7.47)
|
285(92.53)
|
University of Amsterdam(UA), Netherlands
|
50(6)
|
294(1.17)
|
43(14.63)
|
251(85.37)
|
Karolinska Institute(KI), Sweden
|
49(7)
|
425(1.69)
|
29(6.82)
|
396(93.18)
|
University of Helsinki(UH), Finland
|
48(8)
|
325(1.29)
|
29(8.92)
|
296(91.08)
|
University of Michigan(UM), USA
|
47(9)
|
339(1.35)
|
36(10.62)
|
303(89.38)
|
Johns Hopkins University(JHU), USA
|
47(9)
|
266(1.06)
|
12(4.51)
|
254(95.49)
|
University of California, San Francisco (UCSF),USA
|
46(11)
|
330(1.31)
|
26(7.88)
|
304(92.12)
|
Northwestern University(NU), USA
|
45(12)
|
401(1.6)
|
24(5.99)
|
377(94.01)
|
University of North Carolina(UNC), USA
|
45(12)
|
268(1.07)
|
45(16.79)
|
223(83.21)
|
University of Groningen(UG), Netherlands
|
44(14)
|
312(1.24)
|
35(11.22)
|
277(88.78)
|
University of California, San Diego (UCSD),USA
|
44(14)
|
199(0.79)
|
18(9.05)
|
181(90.95)
|
University of Pittsburgh(UP), USA
|
43(16)
|
266(1.06)
|
28(10.53)
|
238(89.47)
|
University of British Columbia(UBC), Canada
|
43(16)
|
258(1.03)
|
15(5.81)
|
243(94.19)
|
McGill University(MGU), Canada
|
42(18)
|
240(0.96)
|
12(5)
|
228(95)
|
University of Oslo(UO), Norway
|
41(19)
|
278(1.11)
|
9(3.24)
|
269(96.76)
|
Duke University(DU), USA
|
40(20)
|
268(1.07)
|
16(5.97)
|
252(94.03)
|
Leiden University(LU), Netherlands
|
40(20)
|
256(1.02)
|
33(12.89)
|
223(87.11)
|
University of Alberta(UoA), Canada
|
40(20)
|
247(0.98)
|
28(11.34)
|
219(88.66)
|
University of Pennsylvania(UP), USA
|
40(20)
|
233(0.93)
|
24(10.3)
|
209(89.7)
|
H Index(R): h index (rank); TA (%): the number of articles published by the institution (percentage of all articles); SA (%): the number of single-institution articles (percentage of TA); CA (%):inter-institutional collaborative articles (percentage of TA)
Keyword analysis
According to the statistics of keywords, a total of 25,191 keywords were used between 2000 and 2019, among which 19155 keywords were appeared only once or twice. And after the keywords clustering work, we found that the HRQoL research has 6 concentrated categories:
-
Health-Related Quality of Life (HRQoL), it was closely linked with terms like: “questionnaire”, “SF-36”, “EQ-5D”, “patient-reported outcome”, “children”, “health status”, “validity”, “psychometrics”, “clinical trial”, “reliability”, “patient satisfaction”, “pedsql”, “Parkinson's disease”, “rheumatoid arthritis”, “breast cancer”, etc.
-
Depression, this category includes terms such as “anxiety”, “rehabilitation”, “exercise”, “elderly”, “mental health”, “social support”, “cognition”, “Parkinson’s disease”, “stroke”, “physical activity”, “hemodialysis”, “HIV”, “Epilepsy”, etc.
-
Obesity, with terms like “adolescent”, “bariatric surgery”, “weight loss”, “children”, “morbid obesity”, “stress”, “BMI”, “physical activity”, “gastric banding”, “exercise”, etc.
-
Disability, including terms such as “multiple sclerosis”, “functional disability”, “Oswestry Disability Index”, “comorbidity”, “pain”, “migraine”, “rheumatoid arthritis”, “survival”, “complication”, etc.
-
Oncology, with “cancer”, “breast cancer”, “radiotherapy”, “chemotherapy”, “survivorship”, “psychological distress” etc.
-
Fatigue, has “chronic fatigue syndrome”, “cognition”, “burden of illness”, “anxiety”, “sleep”, etc. In addition, fatigue was a quickly rising term during 2000 to 2019.
Table 5 lists the top twenty quickly rising keywords sorted by their SGR 4, we chose SGR 4 because the terms chosen according to the sudden increase in popularity are particularly appropriate to characterize a current research front[16]. Among the top 100 most frequently used keywords, the research interest in these 20 keywords had grown the fastest in period 4 (2015–2019). All keywords besides “women” maintained a growing interest in HRQoL research from 2000 to 2019, “women” experienced a decline in the period 3. What’s more, these keywords have different growth rates in different periods. The growth in research interest for “dementia” has continued to accelerate over the past 20 years; growth rate in research interest of “well-being”, “surgery”, “health”, “HIV”, “chronic disease”, “aging”, “women” and “stress” has slowed down in the period 3 (2010–2014), but has grown rapidly in period 4 (2015–2019). Therefore, we believe that the heat of these nine keywords will continue to increase in future research. For the keywords which have high rank of ASGR but the growth rate in research interest slowed down in period 4 (2015–2019), such as “patient-reported outcome”, “survivorship”, “oral health-related quality of life/OHRQoL” and “physical activity”, researchers may need to focus on finding new research directions in future research.
Table 5
Top 20 quickly rising keywords in period 4
Keyword
|
ASGR (R)
|
SGR 2
|
SGR 3
|
SGR 4
|
older adults
|
2.92(6)
|
6.33
|
0.41
|
2.03
|
dementia
|
0.99(41)
|
0.57
|
0.91
|
1.48
|
cognition
|
1.54(14)
|
1.20
|
2.00
|
1.42
|
patient-reported outcomes
|
3.26(4)
|
4.00
|
4.40
|
1.37
|
survivorship
|
2.16(6)
|
2.50
|
2.86
|
1.11
|
well-being
|
1.44(13)
|
2.80
|
0.47
|
1.04
|
surgery
|
1.29(16)
|
2.25
|
0.69
|
0.93
|
health
|
0.83(47)
|
1.44
|
0.15
|
0.91
|
mental health
|
1.38(14)
|
1.50
|
1.77
|
0.88
|
HIV
|
1.06(30)
|
2.15
|
0.22
|
0.82
|
pediatric
|
1.26(18)
|
1.60
|
1.38
|
0.81
|
oral health-related quality of life/OHRQoL
|
2.37(4)
|
5.46
|
0.89
|
0.76
|
chronic disease
|
1.1(26)
|
2.43
|
0.13
|
0.74
|
aging
|
0.71(51)
|
0.50
|
0.89
|
0.74
|
women
|
0.79(42)
|
1.75
|
-0.09
|
0.70
|
stress
|
0.99(29)
|
1.67
|
0.63
|
0.69
|
pain
|
1.14(22)
|
1.38
|
1.37
|
0.68
|
fatigue
|
1.07(25)
|
1.71
|
0.82
|
0.66
|
physical activity
|
1.55(9)
|
1.36
|
2.64
|
0.65
|
sleep
|
1.13(21)
|
2.00
|
0.76
|
0.62
|
ASGR *(R): Average of SGR 2, SGR 3 and SGR 4 (rank); SGR 2, SGR 3 and SGR 4: the Sequential Growth Rate of period 2, period 3 and period 4 |