Reporting of "quality of life": a systematic review and quantitative analysis of research publications in palliative care journals.

CONTEXT: Palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. One of the most important goals in clinical palliative care is to improve patients' quality of life (QoL). AIM: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on QoL. SETTINGS AND
DESIGN: This was a systematic review of palliative care journals.
MATERIALS AND METHODS: Twelve palliative care journals were searched for articles with "QoL" in the title of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into assessment and treatment, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original article category was further classified according to study designs. STATISTICAL ANALYSIS USED: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5.
RESULTS: The overall reporting rate among all journals was 1.95% (71/3634), and Indian Journal of Palliative Care (IJPC) had the highest reporting rate of 5.08% (3/59), followed by Palliative Medicine (PM) with 3.71% (20/538), and Palliative and Supportive Care (PSC) with 3.64% (9/247) reporting.
CONCLUSIONS: The overall reporting rate for QoL articles in palliative care journals was 1.95% and there were very few randomized clinical trials and systematic reviews found. The study findings indicate further high-quality research to establish an adequate evidence base for QoL.

INTRODUCTION

The most important focus of palliative care in the treatment of patients with life-limiting conditions is to improve their symptom control,[1] level of functioning,[23] and quality of life (QoL).[4-6] The World Health Organization (WHO) defines QoL as “individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”[7] According to WHO, health-related QoL (HRQoL) is a broad-ranging concept affected in a complex way by a person's physical health, psychological state, level of independence, social relationships, personal beliefs, and their relationship with salient features of their environment.[7]

HRQoL has been widely studied on the general population and on patients with a variety of disease conditions and varying age groups.[8] Two types of measurement instruments for assessing the QoL were developed: generic and disease or population specific.[9] Examples of generic HRQoL instruments were Medical Outcomes Short-Form Health Survey (SF-36),[10] WHOQoL-100,[11] WHOQoL-BREF,[12] Kidney Disease QoL–Short Form (KDQoL-SF) questionnaire,[13] McGill QoL questionnaire,[14] and EuroQoL/EQ-5D.[15] Disease-specific HRQoL measures were Asthma QoL questionnaire (AQLQ),[1617] Diabetes-Specific QoL (DiabQoL),[18] European Organization for Research and Treatment on Cancer–Quality of Life questionnaire (EORTC-QLQ),[19] Neuropathy-Specific QoL instrument (NeuroQoL),[20] Stroke-Specific QoL,[21] Alzheimer's Disease-Related QoL (ADRQL) questionnaire.[22] Population-specific HRQoL measures were OPQoL[23] and PedsQoL.[24] One instrument specifically developed for its use in palliative care settings is the palliative care QoL instrument (PQLI).[25] The assessment of HRQoL was done through a range of assessment methods by the person (self-reported), the caregiver (proxy reported), or the healthcare professional (clinician rated).[26]

Despite the growing emphasis on QoL in clinical palliative care practice,[27] the current evidence era and the ensuing evidence-based practice warranted application of current research evidence into clinical decision making to facilitate evidence-based palliative care (EBPC).[28] Such an analysis of research evidence could not be based upon anecdotal findings[29] and thus there is a need to evaluate the reporting of research on QoL in palliative care journals. Previously published studies on analysis of palliative care journals were on reporting of moral problems (ethical issues),[30] euthanasia,[31] chaplains and community-based clergy,[3233] religion and spirituality,[33-35] cancer pain,[36] and pediatric palliative care.[37] The objective of this paper was to perform a quantitative analysis of research articles on QoL, published in palliative care journals over the past 5 years.

MATERIALS AND METHODS

Search strategy and criteria

Journals indexed in MEDLINE with name “palliative” were included and searched from 2006 till 2010 for English papers with “quality of life” in the title of the paper.

Data synthesis

The total number of articles in all the selected journals was taken as N. The number of included articles (N1) based on search criteria were compared with the number of articles that had “quality of life” in the title (NR) to obtain reporting rates (N1/N%) for each journal. Such an estimate provided reporting rate (RR) for QoL. The journals were categorized broadly into multidisciplinary, medical, nursing, and other (social work) categories of palliative care journals. The included studies were then categorized into original articles and review articles. The original articles were then again grouped into qualitative and quantitative studies. The review articles were grouped into narrative and systematic reviews. The qualitative and quantitative studies were then subgrouped based upon study designs. Further, the articles on QoL were grouped into two broad categories: assessment studies and treatment studies. The number of articles reported in each of the final subgroups was computed. The procedure of data synthesis is explained in the schematic flowchart [Figure 1].

Figure 1

Schematic flowchart for data synthesis used in this study

Data analysis

Descriptive analysis using frequencies for the number of studies with respective percentiles was used for reporting characteristics and was done using the 95% confidence interval by SPSS for Windows, version 11.5 (SPSS Inc., IL, USA). The comparison between journals and article categories was done visually.

RESULTS

Overall journals’ characteristics

The study included 12 palliative care journals with a total number of 3634 articles and 71 included articles which had “quality of life” in the title. The overall reporting rate for articles on QoL is 1.95% [Figure 2]. AJHPC, Am J Hosp Palliat Care; BMCPC, BMC Palliat Care; COSPC, Curr Opin Support Palliat Care; IJPC, Indian J Palliat Care; IJPN, Int J Palliat Nurs; JHPN, J Hosp Palliat Nurs; JPPCP, J Pain Palliat Care Pharmacother; JPC, J Palliat Care; JPM, J Palliat Med; JSWELPC, J Soc Work End Life Palliat Care; PM, Palliat Med; and, PSC, Palliat Support Care.

Figure 2

Overall prevalence of reporting “quality of life” (QoL) in all the palliative care journals

Individually AJHPC had 8 articles,[38-45] BMCPC had 1 article,[46] COSPC had 1 article,[47] IJPC had 3 articles,[48-50] IJPN had 5 articles,[51-55] JHPN had 0 article, JPPCP had 0 article, JPC had 5 articles,[56-60] JPM had 18 articles,[61-78] JSWELPC had 1 article,[79] PM had 20 articles,[80-99] and PSC had 9 articles[3100-107] on QoL. Also refer to Table 1 for respective reporting rates and Figure 3 for the comparison of number of “QoL” articles and “other” articles between the journals. Indian Journal of Palliative Care (IJPC) had the highest reporting rate of 5.08% (3/59), followed by Palliative Medicine (PM) with 3.71% (20/538), and Palliative and Supportive Care (PSC) with 3.64% (9/247) reporting rate.

Table 1

Comparison of reporting rates of palliative care Journals on Pediatric Palliative Care

Figure 3

Comparison of reporting rates of “quality of life” (QoL) articles between palliative care journals AJHPC, Am J Hosp Palliat Care; BMCPC, BMC Palliat Care; COSPC, Curr Opin Support Palliat Care; IJPC, Indian J Palliat Care; IJPN, Int J Palliat Nurs; JHPN, J Hosp Palliat Nurs; JPPCP, J Pain Palliat Care Pharmacother; JPC, J Palliat Care; JPM, J Palliat Med; JSWELPC, J Soc Work End Life Palliat Care; PM, Palliat Med; and PSC, Palliat Support Care

Of the selected journals, seven were multidisciplinary (AJHPC, BMCPC, COSPC, IJPC, JPC, JPPCP, PSC), two were medical (JPM, PM), two were nursing (IJPN, JHPN), and one was other (social work – JSWEOLPC). The comparison between the four categories of palliative care journals is shown in Figure 4. Medical palliative care journals had the highest reporting rate of 2.34% followed by multidisciplinary palliative care journals at 2.16% and social work-related palliative care journals at 1.51% and nursing palliative care journals at 1.14%.

Figure 4

Comparison of reporting rates between multidisciplinary, medical, nursing, and other palliative care journals

QoL studies on assessment or treatment

Of the 71 included articles, 56 were on assessment[33840-4447495052-62646568-72747678-8082-8688-9294-9698-107] and 15 were on treatment.[394546485163666773757781879397]

Among the 56 assessment articles, 43 were original articles[34249505254-62646568-72747678-8082-86889192959698-105] and 13 were review articles.[338404143444753899094106107] Among the 43 original articles on assessment, 8 were qualitative studies[5458687682858698] (all of them were cross-sectional studies) and 35 were quantitative studies[34249505255-5759-62646569-727478-808384889192959699-105] of which 4 were cohort studies,[61727483] 1 article was a case–control study,[65] and 30 articles were cross-sectional studies.[34249505255-575960626469-7178-8084889192959699-105] Of the 13 review articles on assessment, 11 were narrative reviews[384041434447538994106107] and 2 were systematic reviews.[399] See Table 2 for a detailed description of assessment studies.

Table 2

Characteristics of assessment articles on “quality of life” in terms of their type of article, method of research, and study design

Among the 15 treatment articles, 12 were original articles[454663666773757781879397] and 3 were review articles.[394851] Of the 12 original articles on treatment, there were no qualitative studies and all were quantitative studies.[454663666773757781879397] Of the 12 quantitative studies, 4 were randomized clinical trials,[45678797] 4 were nonrandomized clinical trials,[46737593] 2 were cohort studies,[6366] 1 was a case–control study,[77] and 1 article was a case report.[81] All the three review articles were narrative reviews. See Table 3 for a detailed description of treatment studies.

Table 3

Characteristics of treatment articles on “quality of life” in terms of their type of article, method of research and study design

The relative prevalence of assessment and treatment studies is shown in Figure 5, and their comparison for original and review articles on QoL is provided in Figure 6. The comparison between original articles on assessment versus treatment for their study designs is given in Figures 7 and 8, respectively.

Figure 5

Comparison of prevalence of articles on QoL (quality of life) assessment versus treatment studies

Figure 6

Comparison of types of articles among the two “quality of life” (QoL) article categories (qualitative and quantitative studies)

Figure 7

Comparison between qualitative and quantitative types of original articles on the assessment of quality of life (QoL) for reporting rates of different study designs. RCT, randomized clinical trial; NRCT, nonrandomized clinical trial; CS, cohort study; CCS, case–control study; CSS, cross-sectional study; CR, case report

Figure 8

Distribution of different study designs among quantitative studies on treatment of “quality of life” (QoL) RCT, randomized clinical trial; NRCT, nonrandomized clinical trial; CS, cohort study; CCS, case–control study; CSS, cross-sectional study; CR, case report

DISCUSSION

This study is essentially the first of its kind of a review of palliative care journals utilizing a systematic approach to quantitatively identify reporting characteristics of articles on QoL. Why this study found a much smaller reporting rate could only be due to the relatively lesser emphasis given on citing “quality of life” in the title of the articles. The reasons for the underrepresentation of QoL in studies published in palliative care journals could be attributed to reporting standards of citing the term QoL in the study title or abstract of the article, and a biomedical orientation to chronic pain and palliative care rather than a behavioral orientation in clinical palliative care practice. This study included journals as they are indexed in MEDLINE since it is the common database for evidence search, and the last 5 years of analysis provided information trend on recent reporting rates. Despite the WHO definition of palliative care emphasizing “quality of life” as a comprehensive part of providing care to patients with life-limiting disorders,[108] the underemphasis of QoL in studies published in palliative care journals is widely unacceptable and it warrants better reporting to establish adequate evidence for practice. This study being the first of its kind has thrown light on existing dearth in research evidence so that clinicians would be fostered for publishing further high-quality research emphasizing on quality of life.

One of the probable reasons for this underreporting could be attributed to the feasibility and pitfalls of using QoL measures in clinical settings, on the frail population, although very needed and essential. The use of QoL measures could be done in a variety of methods (patient vs. caregiver reported) which would also add to the heterogeneity of the observed findings.[109]

Many of the articles in palliative medicine aim to improve our patients, even if they do not include the word QoL in the title; there are many articles which may include QoL as part of the article (such as articles on symptom assessment scale, palliative outcomes, well being, etc.) which may not be necessarily the title, so this may actually under-represent the real numbers of articles out there that include and support the topic. This could be one of the important limitations of this study being its search strategy, since we assume that the maximum emphasis is given to the terms in the title, and title terms are widely searched and accessed for evidence retrieval.

The study found some interesting observations – some expected, some rather unexpected. As expected, a multidisciplinary emphasis on QoL was evident when multidisciplinary palliative care journals ranked he highest compared to medical and nursing palliative care journals. The two unexpected observations include lack of qualitative studies among articles on QoL treatment and very few randomized clinical trials (either qualitative or quantitative) and/or systematic reviews found. The insufficient number of systematic reviews and randomized clinical trials virtually undermines the current EBPC since they are ranked the highest in hierarchy among the levels of evidence.

Healthcare professionals need to be aware of the relatively lesser reporting of QoL articles in the palliative care journal literature and should shoulder the responsibility to foster a better number of reporting high-quality research on QoL for EBPC. Researching the incidence of reporting provides us with information on the amount of existing evidence and this information may be used by clinicians focusing on QoL in their palliative care practice. In future, such reviews could be performed with quality appraisal and identify the quality of reporting QoL articles. Also, reviews from other related journals like rehabilitation journals and medical journals may yield different results. The percentage of QoL being a thematic focus was not reported previously among general medical journals, and in this study, QoL was reported in only 2.34% of articles in general medical (palliative care) journals in contrast to the overall 1.95% among all palliative care journals. This seemingly positive shift in research focus toward QoL in palliative medicine is most welcome and is the emergent need of the hour. The comparison of reporting characteristics between journals based on their specialty would direct clinicians to find research appropriate to answer their relevant clinical questions during EBPC.

CONCLUSION

The overall 5-year prevalence in reporting of articles on QoL was 1.95% among the 12 palliative care journals reviewed in this study. It would be harsh on our part to conclude that this reporting rate is low, since we do not have published evidence on QoL reporting in other journals. There were very few randomized clinical trials and systematic reviews found. The study findings indicate lack of an adequate evidence base for QoL and further high-quality clinical trials are required to base clinical decisions for palliative care clinical practice.