To review which domains somatically ill persons nominate as constituting their QoL. Specific objective is to examine whether the method of enquiry affect these domains.
Methods
We conducted two literature searches in the databases PubMed/Medline, CINAHL and Psychinfo for qualitative studies examining patients’ self-defined QoL domains using (1) SEIQoL and (2) study-specific questions. For each database, two researchers independently assessed the eligibility of the retrieved abstracts and three researchers subsequently classified all QoL domains.
Results
Thirty-six eligible papers were identified: 27 studies using the SEIQoL, and nine presenting data derived from study-specific questions. The influence of the method of enquiry on patients’ self-nominated QoL domains appears limited: most domains were presented in both types of studies, albeit with different frequencies.
Conclusions
This review provides a comprehensive overview of somatically ill persons’ self-nominated QoL domains. However, limitations inherent to reviewing qualitative studies (e.g., the varying level of abstraction of patients’ self-defined QoL domains), limitations of the included studies and limitations inherent to the review process, hinder cross-study comparisons. Therefore, we provide guidelines to address shortcomings of qualitative reports amenable to improvement and to stimulate further improvement of conducting and reporting qualitative research aimed at exploring respondents’ self-nominated QoL domains.
Afkortingen
QoL
Quality of life
SEIQoL
Schedule for evaluation of individual quality of life
ALS
Amyotrophic lateral sclerosis
IBS
Irritable bowel syndrome
HIV
Human immunodeficiency virus
ADDQoL
Audit of diabetes-dependent quality of life
WHOQoL
World health organization quality of life
PGI
Patient-generated index
Introduction
It has long been understood that somatic illnesses and their treatment may have a considerable influence on patients’ health-related quality of life (QoL). Since the 1980s a range of generic and disease-specific QoL measures have been developed in efforts to gain an understanding of this influence [1]. Consequently, patient-reported QoL measures have increasingly been included in randomized clinical trials to demonstrate the effect of treatment beyond clinical efficacy and safety [2].
The majority of these QoL questionnaires are based on domains formulated by researchers and health policy makers [3]. However, a repeated finding is that externally defined domains may not reflect the domains that patients consider relevant for their QoL [e.g., 4‐6]. For example, Morris et al. [4] compared the health-related QoL domains identified by patients undergoing major surgery with seven commonly used HRQoL instruments. While the domains’ ‘concern about quality of care’, ‘cognitive preparation’ and ‘spiritual wellbeing’ were frequently mentioned as constituting patients’ QoL, these were not assessed by most of the instruments.
While the usefulness of standardized QoL questionnaires has been repeatedly demonstrated and is beyond doubt, we lack a comprehensive overview of QoL domains that patients themselves nominate as constituting their QoL. Such insight is needed to ensure that the relevant domains are addressed and to guide questionnaire selection. We therefore undertook a literature review of qualitative studies that asked patients to identify domains constituting their QoL. To our knowledge, this is the first attempt to provide a comprehensive overview of patients’ self-nominated QoL domains.
Two types of studies are relevant for this review. First, studies using the Schedule for Evaluation of Individual Quality of Life (SEIQoL) [7, 8] are relevant, as they make the perspective of the individual central to defining relevant QoL domains. This widely used individualized measure [9] requires that patients nominate five domains they consider most relevant to their QoL. When patients have difficulty nominating five domains, a prompt list can be used consisting of the cues: family, relationships, health, finances, living conditions, work, social life, leisure activities and religion/spiritual life [10]. The SEIQoL generates an overall index score that is the result of the individual’s rating of his/her functioning in and importance of each self-nominated QoL domain. The SEIQoL thus provides a wealth of qualitative data about the content of the nominated domains, although most studies only report the quantitative results related to the overall index scores. We specifically excluded individualized measures that did not directly ask for life domains relevant for patients’ QoL. For example, the Patient-Generated Index (PGI) [11] was excluded because it asks patients to nominate the five most important areas of life or activities that are affected by their condition as was Cantrill’s ladder [12] that asks patients to describe their worst imaginable and best imaginable life satisfaction. Individualized measures such as the Audit of Diabetes-Dependent Quality of Life (ADDQoL) [13] and the World Health Organization Quality of Life (WHOQoL) [14] were excluded, since they only allow for individual weighting of predefined QoL domains. All of these measures thus have a slightly different scope than that in the current review.
A second cluster of studies is also relevant; these explore somatically ill patients’ self-generated QoL domains to evaluate the content validity of existing, standardized QoL questionnaires or to improve the quality of care. The interview question(s) used to elicit patients’ self-defined QoL domains vary per study, e.g., respondents are explicitly asked what their personal perception of quality of life is, how they would describe quality of life, or what the term quality of life means to them. To differentiate these studies from those using the SEIQoL, we refer to this group of studies as those using study-specific questions.
This review thus includes studies reporting qualitative data originating from the use of the SEIQoL and from studies employing study-specific questions. The domains that patients report and/or researchers aggregate and present may be influenced by several factors. We will address one of these in examining whether the method of enquiry is related to generation of different domains. The use of the SEIQoL prompt list is likely to result in the presentation of QoL domains similar to the prompt list, whereas the use of study-specific questions may result in different QoL domains. We therefore compare the QoL domains presented in studies using the SEIQoL with those in studies using study-specific questions (Appendix 2).
Methods
Literature searches
We conducted two systematic literature searches in the databases PubMed/Medline, CINAHL and PsychInfo for papers published from 1980 on using (1) SEIQoL and (2) study-specific quality-of-life questions. We conducted consecutive literature searches employing the following search terms: SEIQoL, SEIQoL-DW and patient(s) as search terms (literature search 1) and quality of life, QoL, content, definition, item generation, content generation and patient(s) (literature search 2). The literature searches were initiated in March 2007, and updated until March 2008.
Study selection
Two researchers independently assessed the eligibility of all abstracts retrieved by our literature searches in PubMed/Medline and PsychInfo (ETB, MK) and CINAHL (ETB, MV). The researchers involved discussed their findings, and decided on each abstract’s eligibility based on mutual consensus. All studies included in this review met the following criteria: (1) The study presents QoL domains qualitatively generated by respondents residing in Anglo-Saxon (i.e., English speaking) or non-English speaking European countries, which are somatically ill (in contrast to having a psychiatric illness) or have symptoms as the result of their illness at the time of study. (2) The study was published in English between 1980 and September 2008 in an internationally peer-reviewed journal. In addition, the studies met the following methodological quality criteria: (3) The formulation of the interview question(s) is provided. (4) The original data are sufficiently presented to demonstrate the relation between the data and the researchers’ interpretation, i.e., via patients’ quotations or detailed categorization schemes. (5) In studies using multiple assessment points, QoL domains nominated at one separate assessment point are discernible. (6) In studies using study-specific questions, data-analysis is carried out inductively, i.e., without a pre-determined framework for the categorization of nominated QoL domains. In case of multiple publications based on the same patient sample, we only included the paper with the most comprehensive presentation of the qualitative data. Due to the different nature of psychiatric illnesses as opposed to somatic illnesses, and its potential implications for patients’ self-defined QoL domains, we only included studies conducted among somatically ill patients. Reviews and case studies were also excluded.
Categorization of QoL domains
Three researchers (ETB, MS, MV) classified all QoL domains presented in the selected papers in two steps based on mutual consensus. First, most studies reporting data originating from the SEIQoL categorized the self-nominated domains according to the nine domains included in the prompt list. We therefore initially used these same nine domains (e.g., family) or closely related QoL domains (e.g., family-related) for categorization (see Table 1).
Table 1
Categorization of QoL domains included in and highly related to the SEIQoL prompt list
Contact with my grandchildren [18]; Ability to enjoy my family [18]; Maintaining good contacts with family [38]
Associate with family [50]; Relationships with relatives/family [52]
Children [8, 15, 22, 29, 35, 45]; My children [18]; Grandchildren [18, 22, 42]; Becoming a granny [18]; Parent [22]; Family tree [22]; Family not directly related [18]
Friends [8, 15, 17, 18, 22‐24, 26, 28, 29, 39, 41‐44]; Friendship [34, 45]; Relations [18]; Specific relationships [44]; Relations to other people [16]; Social contacts [18, 45]; Ability to enjoy other relations [18]; Maintaining good contacts with others [38]; Neighbors [17, 26]; Contacts in my living environment [18]
Associate with friends [50]; Friends [53]; Social network [46]; Essential networks [47]; Relationships that work [48]; Relationships with other people-general [52]
Physical limitations [16]; Feeling physically well [18]; Being able to do what I want to do [18]; Feeling good [18]; Physical ability [24]; Physical functioning [38]
Get rid of bowel symptoms [46]; Not having diarrhea [50]; Eat everything [51]; Good appetite [50]: Find explanation for bowel symptoms [46]; Knowledge about IBS [46]
House [17, 42]; Housing [15, 16, 38]; Home [15, 17, 18, 23, 24, 26, 28]; Home/dwelling [43]; Home life/environment [32]; Having somewhere to live/a home [8]; Housing conditions [18]; Good living conditions [38]; Living environment [24]
Second, two researchers (ETB, MV) independently classified the QoL domains that could not be grouped according to the SEIQoL prompt list domains, into new domains. They discussed the formulation of the domains and the classification with MS until consensus was reached. This iterative process resulted in eight additional domains; psychological functioning, coping/positive attitude, independence, role functioning, feeling of self, cognitive functioning, quality of care, sexuality, and a miscellaneous category (see Table 2).
Table 2
Categorization of QoL domains according to additional, inductively generated domains
Quality of care and attention [38]; Being treated honestly and sincerely [38]
Support from healthcare professionals [46]; Feeling cared for/treated with respect [51]; Relationships with health care team (trust, esteem, support) [52]; Continuity of care/staff [51]; Availability/acceptance of limitations of health care staff [51]; Feeling secure/vulnerable (quality of palliative care) [51]; Health care professionals’ skills [52]; Spiritual care [51]; Health care institutions general organization [52]; Health care institutions physical environment [52]
Sexuality
Sex [8, 26, 42]; Sexuality [8, 21]; Sex life [44]; Sexual ability [15]
Miscellaneous
Enjoying pleasant memories [38]; Reminiscence [42]
Right place to be: home/hospital [51]; Indoors (does/does not meet psychosocial/physical/functional needs) [51]
In order to classify all QoL domains according to the afore-mentioned categorization scheme, we had to tease apart the QoL domains originally presented in 22 papers [8, 17, 18, 24, 26, 28, 29, 32, 34, 36, 38, 39, 41, 43‐45, 48, 50‐53, 55]. For example, we have separated the single QoL domain family/friends presented in a study by Archenholtz et al. [53] into two QoL domains: family (according to the SEIQoL prompt list) and friends (related to the SEIQoL prompt list cue relationships).
Additionally, we only classified the QoL domains that were presented at the lowest level of abstraction in the articles, since these are closest to the patients’ own definition of QoL. This meant that in 12 papers [8, 16, 18, 22, 38, 46‐52, 56] we ignored the overarching themes that authors used to group the self-nominated QoL domains. For example, Cohen and Leis [51] classified the QoL domains ‘physical condition’, ‘physical functioning’, ‘psychological state’ and ‘cognitive functioning’ into the overarching theme ‘own state’. We used the four QoL domains for classification rather than the more abstract construction ‘own state’.
Results
Study selection and characteristics
The literature search for papers using SEIQoL resulted in 61 abstracts (see Fig. 1). Twenty-nine abstracts were excluded based on the inclusion and exclusion criteria presented earlier. The remaining 32 papers [8, 15‐45] were examined with regard to our methodological quality criteria, resulting in the further exclusion of six papers [20, 25, 27, 30, 37, 40]. Examination of the references included in the 26 selected papers resulted in one additional paper eligible for this review [7]. Literature search 1 thereby resulted in 27 eligible papers.
Fig. 1
Flow chart of the selection of eligible papers resulting from literature search 1 (studies using the SEIQoL)
×
The literature search for papers using study-specific questions yielded a total of 1,765 abstracts (Fig. 2). From these studies, 1,752 were excluded based on the inclusion and exclusion criteria. The remaining 13 papers [46‐58] were examined with regard to our methodological quality criteria, which led to the further exclusion of four papers [49, 54, 57, 58]. Additionally, all references quoted in the selected nine papers were examined for eligibility, which did not lead to the inclusion of new papers. Overall, the literature searches yielded a total of 36 eligible papers [27 papers (literature search 1) + 9 papers (literature search 2)] (See Tables 5 and 6 in the Appendices for a summary of the design and results of the included papers).
Fig. 2
Flow chart of the selection of eligible papers resulting from literature search 2 (studies using study-specific questions)
×
Half of the included studies were conducted among patients with cancer [15, 16, 18, 19, 21, 22, 24, 28, 34, 35, 41, 44, 47, 50‐52, 55, 56], whereas the other studies included patients with a range of other somatic illnesses (see Table 3). In three studies, the patient sample consisted of a combination of both patients with cancer and patients with another somatic illness [38, 39, 45].
Table 3
Patient classification according to somatic illness and method of enquiry for literature searches 1 and 2
In most studies, a face-to-face interview was conducted to elicit patients’ QoL domains [7, 8, 15‐19, 21‐24, 26, 28, 29, 31‐37, 39, 41, 42, 44, 45, 48, 50, 51, 55, 56]. In the remaining studies, QoL domains were identified by means of a telephone interview [53], focus groups [47], or a questionnaire employing open-ended questions [43, 46, 52].
Studies using SEIQoL presented a median of 16 QoL domains (range 7–62), and studies using study-specific questions presented a median of 13 QoL domains (range 9–29) (Appendix 1).
Elicited QoL domains
QoL domains categorized according to the SEIQoL prompt list
Table 1 provides the QoL domains categorized according to the 9 domains included in or highly related to the SEIQoL prompt list, as derived from the studies using the SEIQoL and studies using study-specific questions, separately. As the first two columns of Table 1 illustrate, SEIQoL studies are unique in presenting the prompt list domains relationships, finances, and living conditions, whereas family, health, work, social life, leisure activities and religion/spiritual life are also reported by one to two studies using study-specific questions. More interestingly, both types of studies report domains related to the SEIQoL prompt list (see last two columns of Table 1). These domains entail more specific information as opposed to the SEIQoL prompt list domains. For example, we classified the presented domains friends, neighbors, associate with family, lover, and marriage, into the domain relationships-related.
All studies using SEIQoL and study-specific questions report a domain referring to health, either by presenting the SEIQoL prompt list domain health, or in presenting a health-related domain. The majority of the studies employing the SEIQoL report other QoL domains included in or highly related to the SEIQoL prompt list (63–100%), whereas fewer studies using study-specific questions do so (22–89%). SEIQoL studies are unique in presenting the domains marriage and/or partnership and spousal welfare (relationship-related), activity and mobility (health-related) and in presenting specific hobbies (leisure activity-related). Irrespective of the method of enquiry, the domain presented least often is living conditions.
QoL domains categorized inductively
Table 2 displays the classification of the QoL domains that could not be grouped according to the domains included in or highly related to the SEIQoL prompt list. These QoL domains are classified into 8 inductively generated, additional domains. Interestingly, ‘independence’ is mentioned in 74% of the studies using the SEIQoL and is thus more frequently reported than the SEIQoL prompt list domains religion/spiritual life (70%), social life (63%) and living conditions (63%). The other inductively generated domains are less frequently reported in studies using the SEIQoL (4–48%) than in studies using study-specific questions (33–78%). The latter group of studies have more elaborate presentations of domains related to psychological functioning (e.g., the domains relaxation and being without anxiety) and coping/positive attitude (e.g., the domains coping strategies and being able to enjoy things). Conversely, only studies using the SEIQoL (N = 6) present the QoL domain sexuality. Irrespective of the method of enquiry, the domain quality of care is presented least often.
Discussion
Perhaps, one of the most important aspects of patients’ QoL is their evaluation of important life domains. Domains that patients consider important are preferably elicited by qualitative interviews. This information is indirectly captured in standardized questionnaires that use patient-generated item content.
This structured literature review is a first attempt to provide a comprehensive overview of the QoL domains a variety of somatically ill persons themselves consider relevant. The presented domains are found to be robust given that the influence of the method of enquiry on patient’s self-nominated QoL domains appears limited. As expected, SEIQoL studies more frequently report the domains used in the SEIQoL prompt list, whereas studies using study-specific questions report more often the inductively generated domains. However, this finding should not obscure the fact that the domains reported are highly comparable: most domains are presented by both types of studies, albeit with different frequencies. Consequently, the domains listed in Tables 1 and 2 are meaningful and may help future researchers to identify relevant and important domains that may need to be addressed in their studies. Second, our findings confirm that the SEIQoL prompt list covers, to a large extent, relevant domains of patients’ QoL. Researchers wishing to use a more exhaustive prompt list can make use of the current findings. For example, these results indicate that the domains independence, psychological functioning, and coping might be additional candidate domains.
Reflections on reviewing qualitative studies
Our findings need to be considered in the light of this review’s limitations. Firstly, there are inherent limitations in reviewing this qualitative material that have hindered a comprehensive and unequivocal overview. The first consideration lies in the way and level of abstraction and aggregation that is needed to communicate patients’ nominated QoL domains. These abstractions first take place during data collection when the individual patient talks with the researcher, and subsequently at the data recording, analysis and reporting stages. Different studies use different levels of aggregation, which hampers comparisons across studies to a great extent. For example, we cannot be sure whether the presented domain (e.g., family) is mentioned literally by patients or rather is an aggregation of, for instance, the domain (grand) children by the researchers. Similarly, we cannot be sure that the domain sexuality was not mentioned in studies using study-specific questions, since the authors might have aggregated it to the level of relationships.
A second consideration is that in qualitative research the choice of words is of key importance. Some specific words may in fact be synonyms (e.g., financial security versus sufficient income; pain-free versus no pain), whereas slightly different words may be intended to mean entirely different things (e.g., physical capacity versus physical functioning). This interpretative difficulty also holds for QoL domains that are phrased either positively or negatively. For example, is inner peace similar to or different from having no stress? Are positively and negatively formulated words polar ends of the same construct or do they represent different constructs? Consequently, caution is needed when comparing different qualitative domains across studies and across different methods of inquiry.
Reflections on the included studies
Since a review can never be better than its constituent studies, the limitations of the included studies impede a comprehensive review. First, the reviewed studies provided notably little information on the socio-demographic and clinical background of their patient groups. Since the type of somatic illness may affect the specific domains patients consider relevant for their QoL, we have attempted to compare the self-nominated QoL domains among different patient groups, e.g., cancer versus non-cancer. However, information regarding patients’ stage of disease was generally insufficiently presented or lacking. Furthermore, the heterogeneity of diseases did not allow a useful comparison between patient groups.
Second, the majority of studies using the SEIQoL did not provide information on the use of the prompt list. This limits our insight into the process of generating QoL domains, i.e., did patients come up with the domains constituting their QoL themselves, or were they guided in the selection of domains by the prompt list? Additionally, these studies did not describe whether patients experienced difficulty in nominating five QoL domains. However, the requirement to arrive at five QoL domains might result in the nomination of domains that are of lesser importance to the patients. Study reports, in which the use of the prompt list is mentioned, did not differentiate between self-nominated and prompt list-elicited QoL domains. Likewise, studies using study-specific questions did not include information on a possibly minimally required number of QoL domains, or the use of an aid, which may have guided patients to think of specific QoL domains.
Third, in the majority of the reviewed studies using the SEIQoL (N = 18) [15‐19, 22‐24, 26, 28, 29, 31, 32, 36, 38, 39, 41, 42] and in one study using study-specific questions [55] patients also completed other (QoL) questionnaires, which might have affected the choice of self-nominated domains. Unfortunately, most studies did not provide information about the order in which the various questionnaires were administered. Fourth, most studies took place in the hospital, whereas other studies were conducted at patients’ homes. The site of data collection might have affected patients’ responses [59, 60].
Limitations and strengths
Limitations inherent to our way of conducting this review also merit attention. First, this study’s objective was to review somatically ill persons’ nominated QoL domains. A specific aim was to examine whether the method of enquiry is related to the generation of different QoL domains. In studies using the SEIQoL, patients not only nominate their QoL domains but additionally weigh the relevance of each of these domains. Since only two studies using study-specific questions [53, 55] included such weighting of nominated QoL domains, we were not able to take the weighting of QoL domains into account. In combining all patient-generated QoL domains, we implicitly weighted all domains as equally important. However, patients might find the first two to three mentioned domains more important than the fourth and fifth domain. Therefore, treating all domains as equally important may not be in accordance with the importance patients attach to their domains.
Second, since the research in this area is multidisciplinary, it is difficult to know if we have retrieved an exhaustive list of references. Furthermore, our review encompasses published papers only. However, we are confident that the studies included provide a comprehensive picture of the current research in this area for several reasons. We conducted our literature searches in three different databases using broad search terms to avoid missing relevant papers, which resulted in a large number of abstracts. Additionally, we examined all references quoted in the selected papers for eligibility, and identified abstracts were reviewed for eligibility by at least two persons [61].
Third, even with three persons involved in the inductive categorization of QoL domains not included in the SEIQoL prompt list, other researchers might have proposed other inductive categories. However, it is doubtful whether this would lead to substantially different findings and conclusions. Fourth, this review focused on one individualized measure, the SEIQoL. Whereas this might imply a limitation in our scope, we focused on the most widely used individualized measure that makes the perspective of the individual central to defining relevant QoL domains. As noted earlier, we excluded other individualized measures which were not specifically QoL oriented or that weighted, rather than generated, QoL domains.
Additional guidelines for conducting and reporting qualitative research
Whereas the described limitations are in part inherent to reviewing qualitative data, they also point to shortcomings of qualitative reports that are amenable to improvement. To address these shortcomings, we provide a number of guidelines in addition to more general checklists for conducting and reporting qualitative research [62‐64] (see Table 4). Our guidelines supplement these existing checklists in their focus on criteria relevant for this type of qualitative research, e.g., the use of an aid/prompt list to guide respondents in nominating (QoL) domains, and the subsequent distinction between self-nominated and prompt list-based (QoL) domains in reporting the results.
Table 4
Guidelines for conducting and reporting qualitative research aimed at exploring respondents’ self-nominated QoL domains
Sample
Description of sample
Describe the sample’s clinical characteristics in sufficient detail, e.g., information regarding patients’ stage of disease, curative or palliative intent of treatment, treatment at the time of study
Data collection
Number of interviewers
Describe the number of interviewers who obtained the data
Interviewer effects
If multiple interviewers obtained the data; describe the procedure to account for possible interviewer effects
Interview question(s)
Provide the exact formulation of the interview question(s) and prompts
Number of QoL domains
Describe the minimally required number of (QoL) domains that patients were asked to nominate
Difficulty in nominating domains
Describe respondents’ possible difficulties in nominating the required number of (QoL) domains
Aid/prompt list
Describe the use of an aid/prompt list
Weighting of domains
Include information on patients’ weighting of their self-nominated domains
Order of data collection
If the study requires patients to conduct an interview as well as administer (QoL) questionnaires, provide the order in which the data was obtained
Analysis
Number of coders
Describe the number of coders who analyzed the data
Resolving discrepancies
Describe how discrepant interpretations were resolved
Derivation of domains
Describe the way the (QoL) domains were derived, i.e., via inductive analysis or a pre-determined framework
Aggregation of domains
Describe how patients’ self-nominated (QoL) domains were aggregated
Results
Separate assessment point
In case of multiple assessment points; provide a distinction of (QoL) domains nominated at one separate assessment point
Presentation of data
Provide a sufficient presentation of the original data to demonstrate the relation between the data and the researchers’ interpretation
Quotations
Provide quotations from different patients to increase the interpretation of the data
Distinction in domains
If an aid/prompt list was used; provide a distinction between self-nominated and prompt list-based domains
These guidelines might be of particular interest for studies aimed at identifying patient-nominated QoL domains. However, they will also be relevant for other qualitative researchers in enhancing the transparency of the research process and subsequent report of their studies. We hope that this literature review on somatically ill persons’ self-nominated QoL domains, and the provision of guidelines for conducting and reporting qualitative research will stimulate further discussion and improvement of qualitative (QoL) research. Additionally, the guidelines might be helpful to journal editors and reviewers to ensure stringent research.
Acknowledgments
This study was funded by the Dutch Cancer Society (UVA 2005-3197). We thank our librarian F. S. van Etten-Jamaludin for her help in defining our search strategy.
Open Access
This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.
Open AccessThis is an open access article distributed under the terms of the Creative Commons Attribution Noncommercial License (https://creativecommons.org/licenses/by-nc/2.0), which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.
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To apply the SEIQoL to a patient population and to provide information regarding the impact of irritable bowel syndrome (IBS) and peptic ulcer disease (PUD) on an individual measure of QoL
N = 20 IBS patients
N = 20 PUD patients
Mean age 35 years (range 17–65)
Forty-two consecutive patients at a gastro-intestinal clinic with either IBS or PUD were asked to participate
SEIQoL
Face-to-face interview administered at the hospital
T1
Nomination of the five areas of life considered most important by each subject in assessing his/her overall QoL
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
To describe the first clinical application of the SEIQoL-DW, assessing the QoL of a cohort of patients with HIV/AIDS managed in general practice
N = 52 patients known to be HIV positive
Mean/median age: not specified
Cohort of patients with HIV/AIDS who were being managed in general practice, primarily recruited through two Dublin inner city general practices and receiving some form of ambulatory care.
SEIQoL-DW
Place where the face-to-face interview was administered: not specified
T1
What are the five most important aspects of your life at the moment?
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 4 individual patient profiles
Domains nominated as important to overall QoL (in descending frequency of patients nominating the cue):
Health
Family
Money, finances
Drugs, access to physeptone
Children
Spouse or partner
Friends, social life
Psychological factors: emotional well-being; sense of control; self acceptance; self esteem; feeling wanted
Independence, choice
Issues relating to death: time left; issues to be faced; having things sorted out before I die; that a cure is found for the virus/AIDS
To assess the ability of clinicians and partners to make proxy judgments on behalf of patients with prostate cancer relating to selection of life priorities and QoL
N = 25 newly diagnosed patients with adenocarcinoma and partners
N = 18 newly diagnosed patients with adenocarcinoma and physicians
(same patients)
Mean/median age: not specified
47 consecutive newly diagnosed patients with histologically proven adenocarcinoma were recruited. All stages and proposed treatments were included.
SEIQoL-DW
Face-to-face interview administered at the hospital
Participants additionally administered the Functional Assessment of Cancer-Therapy-Prostate (FACT-P) questionnaire and an overall QoL score using a VAS
T1
Nomination of the five most important areas of life that were central to the patient’s QoL
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Cues nominated more than once (not ranked in any order):
To prospectively measure QoL in patients with malignant blood disorders following stem cell transplantation (SCT)
22 patients with malignant blood disorders
Median age: 50 years (range 31–66)
During a 2-year period patients listed for autologous SCT at two university hospitals in Stockholm were asked to participate in the study.
SEIQoL-DW
Face-to-face interview administered at the hospital
Participants additionally administered a disease-related version of the SEIQoL-DW and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)
T1–T2
If you think about your life as a whole, what are the most important things in your life at present—both good and bad- that are crucial for your QoL?
One of the authors carried out the analysis of the transcripts. The list of categorized statements was read by one of the co-authors. The two researchers achieved mutual consensus.
The list of domains previously obtained in long-term survivors of Hodgkin lymphoma was used as an initial framework for categorization [65]
Illustration of findings with individual statements
Domains nominated as important in life at T1 (in descending frequency of patients nominating the cue):
Family
Health in general
Relations to other
people
Health concerns/problems: fatigue/loss of energy; physical limitations; psychosocial impact
To compare the PDQ-39 with the SEIQoL-DW in patients with idiopathic Parkinson’s disease (IPD)
N = 123 IPD patients
Median age 75,4 years (range 51–89)
Eligible patients were included if they were under the care of the Parkinson’s disease service in North Tyneside on 31 December 2003
SEIQoL-DW
Face-to-face interview administered at the patient’s home
Participants additionally administered the Parkinson’s Disease Questionnaire (PDQ-39), the Mini Mental State examination, Beck Depression Inventory, a qualitative pain assessment and the Palliative care assessment tool
T1
Nomination of five life areas or cues that are important to the patient
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
The authors selected the 21 most mentioned domains out of a total of 87 domains mentioned (in descending frequency of patients nominating the cue):
To examine how patients choose and define the five areas they consider important for their quality of life and to describe the problems in the elicitation of cues
N = 31 patients diagnosed with small-cell lung cancer (SCLC)
Mean/median age: not specified. (range 39–82)
Consecutive sample of SCLC patients, beginning their first-line chemotherapy, were recruited from five outpatient clinics for chest diseases in The Netherlands.
SEIQoL-DW
Face-to-face interviews. All but two interviews were administered at the patient’s home
Participants additionally administered the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and it’s lung cancer module (QLQ-CL13)
T1
Nomination of five areas of life that the individual considers to be important for his/her overall QoL
Information on the analysis of the interviews to investigate the administration process.
Illustration of findings with individual interview extracts
Domains considered to be important for patient’s overall QoL (in descending frequency of patients nominating the cue):
To investigate the relationship between response shift and adjustment
N = 56 patients with metastatic cancer
Mean age 64 years (range 46–82)
Consecutive patients who had been diagnosed with metastatic cancer within the last 3 months and being treated with palliative intent were recruited from three Medical Oncology Departments in Sydney, Australia
SEIQoL-DW
Face-to-face interview administered at the patient’s home
Participants additionally administered the Functional assessment for Cancer Therapy (FACT-G)
T1–T3
Nomination of five most important domains that a subject indentifies as contributing to his/her QoL
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains mentioned as the most important contributor to QoL at T1 (in descending frequency of patients nominating the cue):
To investigate individualized QoL of patients participating in a Phase 1 trial of the novel therapeutic reovirus (Reolysin)
N = 16 patients with incurable metastatic cancer
Median age 53 years (range 32–76)
Sample: not specified. Patients were recruited according to the protocol of the Phase 1 trial.
SEIQoL-DW
Face-to-face interview administered at the hospital
Participants additionally administered the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), the Brief Symptom Inventory (BSI), the Beck Depression Inventory (BDI), the Spiritual Health Inventory (SHI) and a semi-structured expectations interview
T1
Nomination of five most important domains of QoL
Only areas identified by all 16 patients are presented in a table.
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 2 individual patient profiles
Domains nominated (in descending frequency of patients nominating the cue):
Family (children, spouse, grandchildren, parent, family tree)
To assess the effect of pacemaker mode on individualized QoL by comparing an individualized evaluation with a generic health index and disease specific symptom scale
N = 73 patients randomized to VVI(R) or atrial-based pacing modes
Mean age 76 years (range 55–88)
All patients recruited to either of two multi-centre pacemaker trials between January 1997 and May 1999 were invited to participate
SEIQoL
Face-to-face interview administered at the hospital
Participants additionally administered the 36-item Medical Outcomes Study Short-form General Health Survey (SF36) and a modified version of the Karolinska Cardiovascular Symptomatology Questionnaire (KCSQ)
T1–T4
Nomination of five domains of life which are considered to be most important
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains nominated at T1; grouped into broader categories (in descending percentage of the total number of cues nominated at T1):
To report QoL of patients shortly after the diagnosis of malignant cord compression (MCC), its relation to physical ability and to emotional well-being
N = 180 patients diagnosed with MCC
Mean/median age: not specified
Patients diagnosed with MCC at any of three oncology centers in Scotland between 1 January 1998 and 14 April 1999 were recruited to the Scottish Spinal Cord Compression Audit. Following diagnosis, patients were asked whether they would be willing to participate in the interview component of the study.
SEIQoL-DW
Place where the face-to-face interview was administered: not specified
Participants additionally administered the Hospital Anxiety and Depression Scale (HADS)
T1–T5
Nomination of five areas of life which contribute most to their QoL
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
Domains nominated at T1 (in descending frequency of patients nominating the cue):
To examine whether the current disease-based clerking could be supplemented in older people with QoL information
N = 60 subjects subjects ≥ 65 years acutely admitted to a Medicine for the Elderly service
Mean age 81 years (range 65–95)
Study population was drawn from a cohort of patients admitted non-electively to an assessment ward in a Department of Medicine for the elderly
SEIQoL-DW
Face-to-face interview administered at the Department of Medicine for the elderly
Participants additionally administered the 36-item Medical Outcomes Study Short-form General Health Survey (SF36), the Mini Mental State Examination (MMSE) and the Controlled Oral Word Association (COWA)
T1
Nomination of five life areas that subjects consider important in determining their QoL
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains nominated as important to the patients’ QoL (in descending frequency of patients nominating the cue):
To evaluate the clinical usefulness of the SEIQoL-DW to quantify the impact on patients living with a diagnosis of lymphoma or leukemia
N = 51 patients with lymphoma and leukemia
Mean age 54 years (range not specified)
A sample of 57 in-patients and out-patients in the hematology department at the Royal Devon and Exeter Hospital were approached during a 4 month period in 1998.
SEIQoL-DW
Face-to-face interview was administered at the hospital
Patients additionally administered the Hospital Anxiety and Depression Scale (HADS)
T1
Nomination of five areas of life which are most important to the subject’s overall QoL
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 2 individual patient profiles
Important life areas nominated (in descending frequency of patients nominating the cue):
To assess the internal consistency reliability and validity of the SEIQoL, to provide a brief description of QoL in ALS, and to examine the relationships between QoL, illness severity and psychological distress in this patient group
N = 26 ALS patients
Median age 63 years (range 34–86)
All patients were recruited through the Irish Register for ALS/motor neurone disease. The first eligible 26 patients consenting to take part were included.
SEIQoL (N = 21)
SEIQoL-DW (N = 5)
Face-to-face interview was administered at the patient’s home (majority), in a hospital setting (3) and in a nursing home (1)
Participants additionally administered the ALS Functioning rating Scale (ALSFRS) and the Hospital Anxiety and Depression Scale (HADS)
T1
Nomination of five areas of life being of greatest importance to the subject’s overall QoL
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
Domains nominated in SEIQoL and SEIQoL-DW (in descending percentage of total number of cues):
To compare the sensitivity of four measures when used in a groups of cardiac patients undergoing the same intervention
N = 16 patients after myocardial infarction or coronary artery bypass graft (CABG)
Mean age 61 years (range 43–73)
Consecutive patients referred to the Royal Devon and Exeter Health Care Trust for cardiac rehabilitation between January and April 1998 were asked to participate
SEIQoL
Face-to-face interviews were administered at the Royal Devon and Exeter Health Care Trust
Participants additionally administered the 36-item Medical Outcomes Study Short-form General Health Survey (SF36), the Quality of life index-cardiac version (QLI), and the Quality of life after myocardial infarction questionnaire (QLMI)
T1–T2
What are the five most important aspects of your life at the moment?
Cues nominated by only 1 patient are labeled miscellaneous
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
Domains nominated as most important to overall QoL at T1 (in descending frequency of patients nominating the cue):
To determine whether patients change their selected items from one SEIQoL evaluation to the next.
N = 30 patients scheduled to undergo total hip arthroplasty
Mean age 57 years (range 22–74)
The study included 47 eligible patients scheduled to undergo total hip arthroplasty in 1995 at the orthopedics department of the R. Salengo Teaching Hospital, Lille, France. Thirty patients completed the SEIQoL at T1 and T2.
SEIQoL
Face-to-face interview administered at the hospital
T1–T2
Nomination of five items that have the greatest impact on the subject’s QoL at the time of the interview
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains nominated at T1 (in descending frequency of patients nominating the cue):
To determine whether the SEIQoL and SEIQoL-DW are valid, reliable and acceptable measures of QoL
N = 80 patients with incurable cancer
Median age 62 years (range 34–87)
Forty patients were recruited from a weekly outpatient program held at the Irish National radiotherapy Center at St Luke’s Hospital in Dublin, and 40 were recruited as inpatients admitted to Our Lady’s Hospice in Dublin.
SEIQoL (N = 62)
SEIQoL-DW (N = 80)
Face-to-face with inpatients administered at the hospital
Place where the face-to-face interview with the patients from the outpatient program was administered: not specified
T1
Nomination of five areas of life the subject considers to be central to his or her QoL
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 2 individual patient profiles
The ten most frequently nominated domains in SEIQoL and SEIQoL-DW (in descending frequency of patients nominating the cue):
To determine the sensitivity of SEIQoL to the impact of a surgical procedure by comparison with measures that do not include the patients’ perspective
N = 20 patients undergoing unilateral total hip-replacement surgery
Mean age 65 years (range 43–78)
Consecutive patients from the greater Dublin area aged 40 and over attending Cappagh Hospital, Dublin with unilateral osteoarthritis of the hip were invited to participate
SEIQoL
Face-to-face interview administered at the hospital
Patients additionally administered the McMaster health index questionnaire, the arthritis impact measurement scales and the life experiences survey
T1–T2
Nomination of five areas of life the subject judges to be most important to his or her overall QoL
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
Domains nominated as essential to overall QoL at T1 (in descending frequency of patients nominating the cue):
To determine to what extent patients admitted to palliative care units (PCU) in The Netherlands maintained good levels of individual quality of life
N = 20 terminal patients admitted to a PCU
N = 16 cancer patients (variety in cancer site)
N = 3 cardiac patients
N = 1 renal condition
Mean age 73 years (range 52–93)
Selection of a sample of 355 patients who were participating in a study in 10 PCUs in nursing homes in The Netherlands between January 2001 and July 2002. The condition of only 20 patients allowed interviewing.
SEIQoL-DW
Face-to-face interviews administered at the PCU
Participants additionally administered the Edmonton Symptom Assessment Scale (ESAS).
T1–T3
Nomination of five areas of life that are considered central to the subject’s QoL
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Results of 17 complete sets of SEIQoL data (T1).
Domains mentioned as important life areas at T1 (in descending frequency of patients nominating the cue):
To evaluate the relationship between personal values and individual quality if life (iQoL) in palliative care patients
N = 64 patients treated for advanced cancer or ALS
Median age 63 years (range 18–81)
Seventy-five patients treated for advanced cancer or ALS at the Interdisciplinary Center for Palliative Medicine and the Outpatient Clinic of the Dept. of Neurology, Ludwig-Maximilians-University, Munich, Germany were asked to participate
SEIQoL-DW
Place where the face-to-face interview was administered: not specified
Patients additionally administered the Portrait Values Questionnaire (PVQ)
T1
Nomination of the life areas which are most important to the subjects’ individual QoL
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains mentioned as important life areas (in descending frequency of patients nominating the cue):
To compare the SEIQoL-DW with the EORTC QLQ-C30 in tumor patients before Peripheral Blood Stem Cell Transplantation (PBSCT)
N = 79 patients suffering from various hematological malignancies undergoing high-dose therapy with PBSCT and participating in a psycho-oncologic psychotherapy program
Mean/median age: not specified
Sample: not specified
SEIQoL-DW
Place where the face-to-face interview was administered: not specified
Patients additionally administered the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)
T1
Nomination of five areas of life important to the subject’s overall QoL
Cues nominated are grouped to 15 ‘aggregated cues’ [30]
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
The 9 most frequently nominated cue groups (aggregated cues) (in descending frequency of patients nominating the cue):
To evaluate the 6-month health outcomes of patients diagnosed with coronary heart disease (CHD) who were discharged from the chest pain service
N = 57 patients diagnosed with CHD
Mean age female patients 64 years
Mean age male patients 61 years
Overall range 40–79
Consecutive sample of patients admitted over a 4-month period with chest pain and a confirmed diagnosis of CHD
SEIQoL-DW
Face-to-face interview was administered at the hospital
Patients additionally administered the Seattle Angina Questionnaire, the Cardiovascular Limitations Profile (CLASP), and the Hospital Anxiety and Depression Scale (HADS)
T1
Nomination of five areas comprising the ‘quality’ parts of the subject’s life
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains mentioned as important to patients’ quality of life (in descending frequency of patients nominating the cue):
To evaluate the quality of life of cystic fibrosis patients with indications for home intravenous antibiotic treatment (HIVAT)
N = 18 cystic fibrosis patients with indications for HIVAT
Mean age 29 years (range 21–41)
Patients treated at the University Hospital in Lund were recruited to participate in a clinical randomized cross-over study. Additionally they were invited to participate in this part of the study directed toward QoL
SEIQoL-DW
Questionnaire
T1
Nomination of the 5 most important aspects of life
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
Domains nominated as important life areas (in descending frequency of patients nominating the cue):
To evaluate the feasibility of SEIQoL with an oncology sample and to compare the SEIQoL with a standards measure, the EORTC QLQ-C30
N = 15 patients with early stage prostate cancer
Mean age 65 years (range 49–78)
Men with early stage prostate cancer treated with radiotherapy at a cancer treatment center in a large western Canadian city who expressed an interest in participating
SEIQoL
Face-to-face interview administered at the cancer treatment center
T1
Nomination of five domains the subject believes are most important to his/her QoL at the moment
No information on the analysis conducted to derive the presented QoL domains
Illustration of findings with 1 individual patient profile
Domains initially nominated as important to patients’ quality of life (in descending frequency of patients nominating the cue):
Family
Health
Finances
Leisure, hobbies, recreation
Marriage
Spiritual/religious life (experiential aspect; service aspect)
To assess the feasibility and the validity of the adaptive conjoint analysis (ACA) to derive weights for individual QoL. Furthermore, agreement of the weighting procedures performed by the ACA and the direct weighting (DW) are assessed
N = 27 cancer patients
N = 20 patients with rheumatoid arthritis
Mean age 61 years (range not specified)
Convenience sample of outpatients with rheumatoid arthritis or cancer who were treated at the Leiden University Medical Center.
SEIQoL-DW
Face-to-face interviews administered at the hospital or at home
T1
Nomination of five areas of live considered most important by the subject to his/her overall QoL
Only domains that were mentioned by at least five patients are presented. The remaining domains are grouped together as ‘other’
No information on the analysis conducted to derive the presented QoL domains
No illustration of findings with individual patients’ profiles
Domains nominated by five or more patients T1 (in descending frequency of patients nominating the cue):
To explore what women with irritable bowel syndrome (IBS) consider a good QoL
N = 30 women experiencing IBS
Median age 38,5 years
Sample: all women who had received a diagnosis of IBD between January 1, 1998 and August 31, 2002 were asked to participate.
The self-rated question was sent to the participants by mail for completion at home
What is your perception of a good quality of life?
Content analysis—Burnard’s method for thematic content analysis [66]
Analysis by 2 researchers
Findings illustrated with patients’ quotes
Patients could not verify the final list of categories
18 subheadings were grouped into 5 categories (in descending frequency of answers in which the cue is mentioned):
Physical and mental health (get rid of bowel symptoms; find explanation for bowel symptoms; knowledge about IBS; eat everything; no pain; sense of well-being; being without anxiety; good mood)
Social well-being (social network; support from healthcare professionals; active leisure time)
Welfare (good work; good economics)
Strength and energy (feel fit and rested; feel relaxed; no stress)
Self-fulfillment (command of life; confirmation; attain goals)
To describe HRQoL in persons with long-term pain after a stroke
N = 41 participants suffering from long-term pain after a stroke.
Mean age 66 years
Sample based on an inpatient register at a neurological clinic in a university hospital in Sweden.
Face-to-face interview administered in the participant’s home
Participants additionally administered the Short Form 36 (SF-36) and the Hospital Anxiety and Depression Scale (HADS) within 2 weeks after the interview
How would you describe your quality of life, especially in relation to your pain?
Content analysis
Discussion of categories among co-authors
Findings illustrated with patients’ quotes
Patients could not verify the final list of categories
Four categories defining QoL are identified (not in any order):
Physical aspects (freedom from pain; physical and cognitive capacity; physical independence)
Psychological aspects
(well-being; contentment; experienced freedom)
Occupation (employment; leisure time)
Social and economic aspects (family and relationships that work; social intercourse; economic security)
To examine what constitutes a good QoL for patients with carcinoid tumors.
N = 19 patients with a carcinoid tumor.
Median age 69 years
Sample: 56 patients were eligible, of which 37 were excluded or not approached
Face-to-face interview administered in the hospital
Participants were presented the interview questions a few days before the interview.
Participants were asked 3 other questions concerning distress and strategies to ‘keep a good mood’
What is important for you to perceive that you have a good quality of life?
Content analysis
Discussion of categories with co-authors
Independent second assessor (none of the authors) assigned the text fragments to the categories
Findings illustrated with patients’ quotes
Three patients with carcinoid tumors could reflect upon the categories mentioned
10 themes defining a good QoL are grouped in 3 categories (in descending frequency of patients nominating the cue):
Social (pursue hobbies/leisure time activities; associate with family and friends; live one’s life in accordance with one’s desire; work and pursue daily activities)
Physical (health; good appetite; not experiencing fatigue; not experiencing pain in the abdomen; not having diarrhea)
To identify aspects cancer patients receiving palliative care consider important to their QoL.
N = 60 palliative care cancer patients; half of them receiving home care and half from palliative care units.
Mean age 68 years
Sample: ?
Face-to-face interviews either at home or in a palliative care unit
What is important to your quality of life?
Content analysis in the editing style
Analysis was carried out by multiple researchers, discussion of categories with co-authors
Findings illustrated with patients’ quotes
Patients could not verify the final list of categories
50 themes are grouped into 5 categories (not in any order):
Own state (physical condition; physical functioning; psychological state; cognitive functioning)
Quality of palliative care (feeling secure/vulnerable; feeling cared for/treated with respect; spiritual care: continuity of care/continuity of staff; availability/acceptance of limitations of health care staff)
Physical environment (right place to be: home/hospital; outdoors (access to nature, weather); indoors (does/does not meet psychosocial/physical/functional needs)
Relationships (support; communication; change in role; being a burden; grow closer/more distant through crisis)
Outlook (existential well-being/spirituality
/facing death; hope; coping/being able to find some joy in life; uncertainty/control)
To identify the content of QoL in a general cancer population.
N = 248 cancer patients
Mean age 53 years
Sample: stratified by place of residence, primary cancer site and stage of disease.
Questionnaire with open-ended questions, completed in the out-patient clinic or at home
Participants additionally kept a diary
Interview questions are in part derived from a study by Padilla et al. [56]
What does the term quality of life mean to you?
Content analysis
Analysis was carried out by 3 people (research nurse, oncologist and psychologist), discussion of categories by the 3 raters
For the categorization of the domains mentioned, an initial framework identified by the Consensus Conference of the Italian Society for Psycho-Oncology (SIPO) was used. Any (sub)domain not represented in the list was added to it.
Findings illustrated with patients’ quotes
Patients could not verify the final list of categories
43 content domains of QoL are grouped into 15 categories.
Aspects defining QoL (1st question) (in descending frequency of patients nominating the cue):
Psychological well-being (feeling calm and relaxed; general; autonomy (physical and psychological); optimism/pessimism; coping strategies; being able to enjoy ‘things’; feeling hopeful; hoping in ‘science’; stress and anxiety; make future plans; body-image; self perception; taking care of one’s needs)
‘My own health’
Relationships with other people (with relatives/family; general; needing of support/understanding)
Healthy way of living
Financial welfare
Conditions at work/job satisfaction
Health care institutions (general organization; physical environment; health care professionals’ skills)
Environment
Functional status (general)
Relationships with health care team (trust/esteem/support)
To examine what QoL means to patients with lung cancer
N = 108 patients with lung cancer (cases)
Mean age 67 years
Consecutive random sample of patients with lung cancer attending a chest clinic
N = 92 patients with chronic respiratory disease (controls)
Mean age 64 age years
Consecutive random sample of patients with chronic respiratory disease
Face-to-face interview administered in the hospital
Patients additionally completed the Nottingham Health Profile (NHP) and the European Organization of Research and Treatment for Cancer Quality of Life Questionnaire (EORTC QLQ-C30)
What is quality of life?
What is a good quality of life for you?
Content analysis
Numbers of researchers analyzing the data is unknown
No illustration of findings with patient’s quotes
Patients could not verify the final list of categories
8 categories defining QoL and a good QoL are identified.
