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Patient-Reported Outcome Measures for the Identification of Supportive Care Needs in People With Lung Cancer: Are We There Yet?
Maguire, Roma PhD, MSc (Med Sci), BN, RGN; Kotronoulas, Grigorios MSc, BSN; Papadopoulou, Constantina MSc, BSN; Simpson, Mhairi F. MN (Cancer), BSc (Nursing), RN; McPhelim, John BSc (Hons) (Nursing), RGN; Irvine, Lynn PGD (Cancer Care), RGN
Author Affiliations: School of Nursing & Midwifery, University of Dundee (Mr Kotronoulas, Mss Papadopoulou and Simpson, and Dr Maguire); and National Health Service (NHS) Lanarkshire (Ms Simpson, Mr McPhelim and Ms Irvine), Scotland, United Kingdom.
The present work was supported through a grant awarded by NHS Lanarkshire. Mr Kotronoulas has received a 3-year PhD scholarship from the “Alexander S. Onassis” Public Benefit Foundation and an educational grant from the Hellenic Society of Medical Oncology, both in Athens, Greece.
The views presented in this article are those of the authors, not of the funding body.
The authors have no conflicts of interest to disclose.
Correspondence: Roma Maguire, PhD, MSc (Med Sci), BN, RGN, School of Nursing & Midwifery, University of Dundee, 11 Airlie Pl, Dundee DD1 4HJ, Scotland, United Kingdom ( firstname.lastname@example.org).
Accepted for publication August 12, 2012.
The use of patient-reported outcome measures is a method of identifying and addressing supportive care needs (SCN) of people with lung cancer, which are often overlooked.
The objectives of this study were to identify and evaluate existing SCN tools previously used in studies with patients with lung cancer and to establish their suitability for use in research and clinical practice.
A systematic search was carried out in the MEDLINE, CINAHL, EMBASE, PsychINFO, and British Nursing Index databases to locate studies conducted between January 2000 and November 2010 that made use of validated self-report SCN tools with patients with lung cancer.
Twelve articles introducing 8 instruments met prespecified selection criteria. All tools were appraised for their content, comprehensiveness, appropriateness, psychometric properties, and feasibility and acceptability. Only 1 lung cancer–specific SCN tool was identified. Whereas the majority of tools had acceptable psychometric properties, only 1 tool had gone through a systematic development process specifically in the context of lung cancer. Therefore, it is questionable whether existing tools can adequately identify healthcare needs that people with lung cancer consider most important.
To ensure that SCNs of people with lung cancer are adequately and promptly identified, rigorous development and systematic testing of content-specific SCN tools are warranted.
Implications for Practice:
Collaborative work between patients with lung cancer, health professionals, and tool developers is required for an SCN tool not only to be content-specific but also to take into consideration the reality of clinical practice in providing supportive care to people with lung cancer.
Lung cancer remains a disease associated with significant morbidity and mortality worldwide.1 Despite advances in anticancer treatment, survival rates remain poor mainly because of problems in the early detection of the disease.2 As a result, the majority of patients are diagnosed at an advanced stage, rendering the use of treatments with curative intent unrealistic.3 Supportive care is therefore paramount to meet evident and hidden healthcare needs of this patient group.4,5
Supportive care needs (SCNs) have been defined as requirements for patient care pertinent to numerous aspects of the cancer experience, including symptoms and adverse effects, worries and concerns, adaptation and coping, information and decision making, or functioning.6 Theoretical models highlight that unmet patient needs arise at both higher (physical, safety and security) and lower (affiliation, self-esteem and dignity, self-actualization) levels7,8 and stress the importance of addressing all human needs and placing “equal emphasis upon each level of human need.”8(p645) Nevertheless, it has been reported that people with lung cancer perceive that their SCNs are not being met and moreover that they have significantly more unmet SCNs compared with people with other cancer types.4,9 Types of unmet need vary; a recent systematic review revealed 9 domains of need, each of them consisting of numerous individual needs. Yet, patients’ psychosocial, future-related, and family-related concerns appear to be the least likely to be addressed by the healthcare team.4
The use of patient-reported outcome measures (PROMs) may be seen as a way of identifying the SCNs of people with lung cancer throughout the cancer trajectory. Patient-reported outcome measures are defined as being “measurements of an aspect of a patient’s health status that come directly from the patient.”10 Their use has been prompted by the growing body of literature that reports incongruence between patients’ perceptions of health-related domains compared with that of health professionals and/or carers.11–13 This has led to the wide-scale agreement that patient reporting is the criterion standard.14 Traditionally, PROMs have been used as end points in order to explore the efficacy of a number of cancer-related pharmacological treatments15; however, their use within routine clinical practice is beginning to increase.16 The collection of PROM data in clinical practice has been reported to have a number of beneficial effects.17 These include enhanced identification of biopsychosocial problems, often overlooked within standard clinical consultations; more timely reporting and management of symptoms and treatment toxicities; alleviation of patient anxiety; promotion of self-care with fewer emergency room visits; improved communication and shared decision making between patients and health professionals, leading to greater patient satisfaction with care; and more effective monitoring of patient outcomes for quality improvement purposes.10,17 Specific to cancer, relevant research has evidenced that the use of PROMs is acceptable to patients and health professionals and that paper-and-pencil administration is comparable to the use of digital technologies.18–21 Studies in the United States,10 the United Kingdom,22 and the Netherlands23 have reported the positive effects of PROMs on communication and patient well-being, especially in community settings,10 thus placing them high on political agendas to inform care delivery and organization of health services.24,25
Over the past 20 years, numerous PROMs have been developed, with their aim being to increase clinician awareness and understanding of the SCNs of people living with cancer.26 Drawing on a holistic view of cancer care, such tools (henceforth referred to as “SCN tools”) attempt to encompass knowledge from several different sources of patient experience (eg, physical, psychological, emotional, information, daily living, social, etc) that may increase the requirement for care. Supportive care need tools may be generic or cancer type–specific, may be self-reported and/or clinician-administered, and may be available in different formats (paper-and-pencil and/or electronic) and/or languages.26 Supportive care need tools can be used to direct clinical consultations, explore changes over time in patient needs, and increase patient awareness of available supportive care interventions, thus ensuring optimization of patient outcomes.
The previously mentioned literature highlights a number of issues relative to the SCNs of people with lung cancer. Importantly, it illustrates the role that SCN tools can fulfill in improving the standards of care provided to this patient population. Therefore, the aim of this review was to identify and evaluate SCN tools previously used in studies of people with lung cancer, as well as to assess and establish their suitability for research and clinical purposes in the context of lung cancer care.
A systematic search was carried out using the MEDLINE, CINAHL, EMBASE, PsychINFO, and British Nursing Index electronic databases to identify studies conducted between January 2000 and November 2010, which made use of validated SCN tools with people with lung cancer.
A highly sensitive search strategy used a wide range of “free text” terms combined with subject headings, including the following: “lung cancer (or cancer),” “supportive care,” “patient care,” “care needs,” “support,” “palliative care,” “patient needs,” “needs assessment,” “questionnaire,” “tool,” “instrument,” “survey.” The reference lists of retrieved articles were also examined for any studies that may have been overlooked. In addition, the search engine Google Scholar was used to locate relevant publications using the aforementioned terms. Additional literature was sought through examination of the reference lists of 3 relevant topical reviews.26–28 All searches began on November 1, 2010, and concluded on November 30, 2010.
Studies were eligible if they were written in the English language, were conducted with adult patients (>18 years of age), were published as original articles in peer-reviewed journals, and reported on the use of a validated, self-report SCN tool with patients with lung cancer, developed for the assessment of patient healthcare needs for clinical or research purposes. Instruments adapted from previously existing validated measures were also considered for inclusion in the present review. No restrictions were placed regarding phase of disease trajectory, type or stage of disease, or treatment type or phase.
Studies were excluded if they reported on the use of nonvalidated instruments or measures adapted from existing nonvalidated instruments; instruments not validated for use in a Western culture; instruments focusing on a specific needs domain only or assessing health-related quality of life; and instruments assessing satisfaction with aspects of healthcare or patients’ opinions on the quality or quantity of care received.
Copies of the SCN tools identified were obtained from original studies, literature reviews, Web sites, or via personal contact with the developers (definitions of abbreviations used throughout the article are provided in Table 1). In order to establish suitability for use in identifying and managing the SCNs of patients with lung cancer in research and/or clinical practice, all tools were subsequently appraised against a range of evaluation criteria including the following:
- intended purpose, target population, setting, and appropriateness;
- content, length, and comprehensiveness/representativeness (ie, coverage of the domains of needs identified in the literature [Table 2]);
- item and scoring format and recall time frame;
- psychometric properties, including validity (actual measurement of the intended construct), reliability (internal consistency and reproducibility), and responsiveness to change (sensitivity to meaningful changes) (Table 3); and
- reported feasibility (time and effort to complete, reading level) and respondent acceptability (Table 3).
The search strategy elicited a total of 1031 articles (Figure). Based on the prespecified selection criteria, 12 studies conducted with people with lung cancer were retained in the final sample4,9,30–39 (Table 4). Nine of the studies incorporated 6 self-report SCN tools in their research methodologies, including the Needs Assessment for Advanced Cancer Patients (NA-ACP),37 the Needs Assessment for Advanced Lung Cancer Patients (NA-ALCP),36 the Palliative Outcome Scale (POS),30,31 the 59- and 31-item Supportive Care Needs Survey–Short Form (SCNS-SF594,32,33 and SCNS-SF31, respectively),35 and the Sheffield Profile for Assessment and Referral to Care (SPARC)39 (Table 1). The remaining studies used 1 instrument to address causes of perceived distress (Problem Symptom List [PSL]; adapted version from the Distress Management Tool)34 and 1 instrument to assess worries and concerns related to the illness (Concerns Checklist–Lung Cancer version [CC-LC]; adapted version from the Concerns Checklist).9,38 Given the dearth of studies in the field, we decided to include all retrieved tools in an attempt to evaluate all measures that can prompt a multidimensional needs assessment in the lung cancer patient population. Table 5 summarizes the purpose and content characteristics, and Table 6 provides summaries of the psychometric properties and feasibility of the SCN tools retrieved.
Intended Purpose, Target Population, Setting, and Appropriateness
In terms of their purpose, the selected SCN tools aimed to provide information on specific symptoms or problems, addressing needs for care and support, and assessing areas of distress and concerns related to the illness (Table 5). All tools were intended to aid routine clinical assessments, and the majority of them were developed for research as well (NA-ACP, NA-ALCP, POS, SCNS-LF59, SCNS-SF31, SPARC). Yet, only 3 instruments were specifically developed for screening patients for further referral and/or intervention. These tools focused on identifying cancer-related symptoms, concerns and needs for use on an outpatient basis (PSL), or patient needs to guide referral of patients and families to palliative care (SPARC, CC-LC).
Most instruments were originally developed with mixed samples of patients with cancer; therefore, their intended focus was the needs of a general population of people with cancer rather than those of people diagnosed with lung cancer. Only 1 SCN tool was specifically developed (NA-ALCP), whereas 2 tools (PSL, CC-LC) were modified versions for use in the context of lung cancer care. What is more, 2 tools added lung cancer–specific items for study purposes (POS30,31 and the SCNS-LF5932,33) (Table 5).
In terms of disease stage, 4 tools were specifically developed to address the needs of patients with advanced cancer and/or the need for palliative care (NA-ACP, NA-ALCP, POS, SPARC). In addition, all tools in our sample were developed for use predominantly in the ambulatory outpatient setting; however, the POS has been effectively used in a variety of other settings (inpatient, community),44 whereas the SPARC can also be used in the primary care setting.48
Content, Length, and Comprehensiveness/Representativeness
Content of most of the generic SCN tools was drawn from several sources and refined through a process that involved health professional and patient feedback, pilot work, and statistical analyses. Three SCN tools (CC-LC, NA-ALCP, PSL) were adapted versions for use with patients with lung cancer, developed after revision and/or reduction of the contents of the original instruments. Yet, details regarding content validity were absent for all of the SCN tools reviewed except for the NA-ALCP; thus, no consensus with regard to this property can be made. In addition, the contents of the SCN tools were compared with the domains of needs identified in a recent systematic review of the literature specific to patients with lung cancer (Table 2). All tools included items that addressed healthcare needs in the majority of the domains (Table 2). The NA-ACP and the SCNS-SF59 were the most comprehensive tools, followed by the NA-ALCP, the PSL, and the SPARC, which covered the majority of needs domains. Even so, the distribution of the number of items over the domains varied significantly between and within the tools. This suggests that some tools assessed specific domains more thoroughly (more items) than others (less items) (eg, NA-ACP, NA-ALCP, SPARC).
The length of tools in both groups ranged widely from 10 to 132 items, even though tools with less than 50 items would be regarded more appropriate to reduce patient burden of completion and clinician burden of administration. However, coverage of needs domains was not influenced by length, given that brief tools such as the NA-ALCP, the PSL, and the SPARC included items across almost all domains.
Item and Scoring Format and Recall Time Frame
As shown in Table 5, different question formats have been adopted by the instruments to elicit information on the degree to which a need is experienced or how distressful or important a problem is considered to be. The majority of SCN tools used a Likert-type scale format to address the extent to which needs, concerns, or problems exist or cause distress. The PSL utilizes a clinician-friendly checklist format with dichotomous items (yes/no) to assess distress related to different problems, whereas the SPARC uses a combination of the aforementioned formats to introduce different types of questions. Importantly, desire for help with identified needs is assessed in 2 tools only (PSL and CC-LC) using a binary data collection format. Given also that the majority of the SCN tools were developed to be administered in a multiprofessional healthcare setting, the question format recognizes the contribution of all members of the healthcare team. However, the NA-ACP and the NA-ALCP include medically oriented items that other professional groups may find difficult to identify with.
Most tools adopt a scoring system for both individual items and domains of needs (NA-ACP, NA-ALCP, SCNS-LF59, SCNS-SF31), and aggregate scores can be yielded for individual domains. However, in 2 tools (CC-LC and POS), a global score is also provided. Moreover, the developers of the SPARC favored an approach where each item is scored and considered on its own merit, rather contributing to produce an overall domain score.48 The previous month was selected as an appropriate recall time frame for the majority of the SCN tools in our sample. Yet, the CC-LC and the PSL use a narrower 1-week time frame, whereas the POS assesses palliative care needs in the previous 3 days.
Supportive care need tools’ empirical validation was examined and demonstrated in various ways. As already stated, content validity of most of the generic SCN tools predominantly relied on existing literature and interviews with health professionals and patients, as well as preliminary pilot work. Examples of tools for which extensive development procedures were followed include the SCNS-LF59, the SCNS-SF31, the NA-ACP, and the POS (Table 6). However rigorous this process may have been, content validity in the context of lung cancer is compromised, given that even in the case of tools specifically developed for use in this patient population, patients’ perspectives of needs and clinicians’ experiences in the care of those people were seldom taken into account.
Construct validity was established for 6 of the SCN tools reviewed. However, the NA-ALCP was the only tool identified where convergent validity and divergent validity were examined among people with lung cancer, even though its factor structure is yet to be confirmed. For the remaining tools, evidence from the original validation studies has confirmed construct validity of the POS and the SPARC through comparisons with similar or dissimilar constructs (POS, SPARC) and the NA-ACP, the SCNS-LF59, and the SCNS-SF31 via factor analytic procedures. In addition, construct validation techniques for the CC-LC and the PSL have not been made explicit as yet.
Similarly, internal consistency reliability of our tool sample was underreported in the lung cancer patient population and was evaluated only for the NA-ALCP and the SCNS-SF31 through calculations of the Cronbach α coefficient. With a recommended reliability standard of α > .80,29 these tools demonstrated good overall internal consistency, although reliability for some of the subscales was low (Table 6). Data regarding the tools’ stability over time were nevertheless scarce and demonstrated only in the original validation studies of the NA-ACP and the POS, in which cases mixed results emerged.
Responsiveness to change, a tool’s ability to capture meaningful changes over time, has never been examined in the context of lung cancer. In the present sample, the only tool in which this property was evaluated was the POS, and this was reported only in the original validation study that was conducted in a mixed sample of patients with advanced cancer.44 At 3 time points after initial referral to a palliative care service, the POS demonstrated good ability to detect clinically, but not statistically, significant change in patient needs; improvements in scores were reported as time from referral lengthened.44
Feasibility and Respondent Acceptability
Despite the importance of the practical considerations in the application of SCN tools in the clinical setting,26 data on tool feasibility were generally scant. Reading level of the NA-ACP, NA-ALCP, SCNS-LF59, and SCNS-SF31 was specifically examined and found appropriate for patients with different educational backgrounds. Where reported, time to complete the tool ranged widely from 7 minutes (POS) to 76 minutes (NA-ACP) (Table 6), but this refers to general samples of patients with cancer rather than to people with lung cancer. It is assumed that a completion time of less than 30 minutes (POS, SCNS-LF-59, SCNS-SF31) would be regarded more appropriate for the population of patients with lung cancer and professionals involved in their care, especially if discussion also is prompted. Whereas electronic versions may require less time for completion,26 only in the case of the CC-LC, a method of administration other than paper-and-pencil was used for people with lung cancer (Table 6).
The CC-LC, the NA-ALCP, and the SPARC were the only tools for which respondent acceptability (ie, ease of use, need for assistance in completing, or clarity of questions asked) was evaluated with people with lung cancer. The SPARC was considered as appropriate by 83% of the patient sample, who perceived the questions posed as being appropriate and understandable. Approximately 30% of the patients required assistance with completing the tool.39 Similarly, a computerized version of the CC-LC was well received by the patients, although participants in the study by Hill et al9 required assistance in interpreting or completing the majority of the items, which may reflect deficits in the tool’s development. Although only minimal missing data were reported for NA-ALCP, no further details on the tool’s acceptability were reported.36 In all cases, no translated versions of the tools were identified, thus rendering their suitability for patients with lung cancer of different ethnic and cultural backgrounds widely unknown.
Most people with lung cancer experience a rapid and fatal course of illness because of the poor prognosis.33 Thus, the provision of patient-centered care is of utmost importance in an effort to address people’s subjective needs for supportive care interventions.50 Addressing such needs can prevent patient distress, poor quality of life, and dissatisfaction with care,35 as well as subsequent increases in healthcare resource utilization and costs.51 However, to adequately address these needs effectively, identification is required. This can only happen through a rigorous, systematic, and ongoing process of assessment26 that spans over key or significant transitional time points: diagnosis, completion of primary treatment, follow-up care, palliative care, and terminal care.39,52 Assessment offers a direct measure of patients’ support preference, identifying areas of unmet needs, and service gaps.53
In the present review, 8 SCN tools used with patients with lung cancer were identified. Yet, only 1 instrument (NA-ALCP) was a lung cancer–specific tool; 2 (CC-LC, PSL) were adapted versions of existing generic SCN tools, whereas the remainder were tools for general use with people with cancer. This fact may well explain the overall poor content validity of this tool sample in the context of lung cancer care. Whereas development of the majority of the generic tools reviewed was supported, it is unclear whether these are really appropriate for use with a specific population of patients. Equally, it is questionable whether existing tools can adequately identify healthcare needs that people with lung cancer consider most important. There is evidence suggesting that the use of PROMs can be effective only if patient’s preferences are taken into consideration, as this ensures that priorities for care are consistent with that of the patients.54–56
In terms of their intended purpose of use, wide variability was noted among the tools; also, half of them were specifically designed to address needs of patients with advanced disease, whereas 3 tools can be considered for screening assessments. Only a few tools were able to provide a comprehensive assessment by covering the full range of domains of needs identified for patients with lung cancer (R. Maguire, et al. “A Systematic Review of Supportive Care Needs of People Living With Lung Cancer,” article submitted for publication, 2012). Similarly, discrimination between assessment of concerns/problems and actual desire to receive care was scarce among the tools reviewed. Often, people with lung cancer may feel that help is not necessary even when they admit the presence of a need.6 Tools that purposefully ask patients to indicate their priorities and desire for care can direct clinicians to areas where intervention might be required the most.
In terms of their psychometric properties, construct validity and internal consistency had been evaluated in varying degrees, however, more often in the original development studies rather than in the 12 studies identified in this review. A considerable number of developers had performed factorial analyses to establish construct validity, but few had assessed stability through a test-retest procedure. Of greater significance, only 1 tool had been tested in a longitudinal study for its ability to capture overtime change. This limitation can inhibit our understanding of how needs of patients with lung cancer may change and fluctuate at different time points, or through transitional stages. As cancer progresses, patients’ preferences for involvement may also change; therefore, monitoring of changing needs with valid measures as the disease status alters becomes paramount.9 Of note, the tools implemented different scoring methods, although Likert-type scales were widely applied. If tools are to be used to capture magnitude of change, important potential “floor” and “ceiling effects” need to be controlled, as well as effect sizes to be reported.28
Importantly, information on tools’ reading level, rates of missing values, time needed to complete, or availability of translated versions or electronic formats was only partially provided in the relevant studies. Such parameters can be seen as critical factors to integration of a tool in the daily practice and need to be more thoroughly examined in future studies with people with lung cancer. For instance, SCN tools in this review were very differently organized possibly in an effort to promote a patient-friendly format and avoid burdening respondents. Yet, only in 4 studies involving the use of the CC-LC, the NA-ALCP, and the SPARC patients with lung cancer were actually asked to comment on the instrument’s clarity and appropriateness.9,36,38,39 A needs assessment tool should be “one that opens the communication channel” between patients and professionals28 and in that sense should be easy to use and easy to interpret and complete, as well as easy for clinicians to extract useful information in a non–time-consuming manner.26
Implications for Research and Practice
Overall, findings of the present review render apparent the fact that development and use of SCN tools in the context of lung cancer are far less than optimal. Currently, only the NA-ALCP and the SPARC can be considered as appropriate for use in clinical practice, whereas the NA-ALCP is the only SCN tool with reasonable psychometric properties that can be used for research purposes in studies of people with lung cancer. Even so, future research is certainly warranted. Taking into consideration the limitations in current SCN tools for use in people with lung cancer, it is imperative that a fit-for-purpose, psychometrically robust, context-specific, and acceptable tool is developed specifically for this patient group, which can be implemented in everyday practice to allow for a meaningful communication and management of unmet needs. Importantly, this process will have to begin with purposefully considering and incorporating perspectives and opinions of patients with lung cancer and views and expectations of health professionals involved in their care, possibly through utilization of focus group interviews to gather meaningfully rich data. Enhancement of the tools’ content validity can lead to refinement of comprehensiveness to enhance patient-professional communication and enable professional understanding of specific patient needs so that tailored care can be provided.
Of relevance, a number of feasibility and acceptability parameters will need to be explored for their potential to influence actual implementation of these tools in busy clinical environments. Obstacles sourcing from the organization of the provision of care within the healthcare service can avert the use of SCN tools; therefore, external/organizational factors need always to be considered. Availability of different administration formats (paper-and-pencil or computerized assessment solutions), assessment methods (self-reported or interview style), and validated translated versions will need to be examined under different circumstances.26 With computerized needs assessments being increasingly seen as widely acceptable methods by both patients and clinicians in cancer care,26,28 investigation of the feasibility of a computer-assisted assessment is highly recommended. What is more, wording and reading level of SCN tools for people with lung cancer will need to be thoroughly examined in future studies, as it can profoundly affect the feasibility of a tool in practice.26 Inappropriate wording may not be acceptable to patients and/or clinicians, whereas inappropriate reading levels may be frustrating for patients or time consuming for health professionals who may be asked to provide clarification.
Importantly, all psychometric qualities of these tools will need to be (re)confirmed. Whereas validity and reliability in the lung cancer patient population will need to be established through consecutive studies conducted among patients at different disease or treatment stages, it is confirmation of the tools’ ability to record clinically meaningful changes that will greatly affect future needs assessment and management at both research and clinical level. Confirming the ability of these tools to capture change over time not only will allow for the longitudinal effects of interventions on patient needs to be documented, but also it will provide health professionals with valuable insight on exacerbations in healthcare needs as patients with lung cancer navigate the healthcare system. Comprehensive and succinct SCN tools can be seen as practically useful for meaningful assessments, which in combination with subsequent care planning can lead to improvement of measurable outcomes of care such as decrease in levels of unmet need or enhancement of communication.26 The role that SCN tools can fulfill in the identification of healthcare needs in this population can be crucial: their routine use in clinical practice not only can dramatically increase the standards of care provided, but also it will allow for patients to voice their preferences and determine for themselves the focus of interventions.
Meanwhile, clinicians are encouraged to incorporate SCN tools in their everyday practice to identify and meet the needs of people with lung cancer. As already stated, 2 instruments (NA-ALCP and SPARC) identified in this review seem to be the most appropriate for use in this patient population. However, a number of additional tools exist that could be usefully adapted to this end (Table 7). Also, health professionals must bear in mind that no perfect tool exists. This automatically implies that clinical use of any of the measures identified here should be primarily informed by clinicians’ own experiences in providing support to patients with lung cancer within their own practices, in an attempt to align their care efforts with patients’ expressed priorities. Therefore, clinicians are invited to consider all relevant parameters that can promote actual use of SCN tools in routine practice. The only safe way is to purposefully explore how the use of an SCN tool is perceived by their patients and colleagues and what the impact of this practice is on the patients’ well-being and the health professionals’ ability to provide meaningful, patient-oriented care. Engaging in an SCN tool-guided dialogue with patients about any unmet healthcare needs may considerably improve satisfaction with the care provided and received.35
The goal of this review was to draw the attention of clinicians to the use of PROMs to provide supportive care to people with lung cancer, at the same time underlying the need for further systematic research in this context. Our search strategy aimed at including all relevant literature; however, it was not exhaustive but limited to the most common databases, to articles published in the English language, and to self-report instruments only. In addition, although research in this area has only recently begun to emerge, it is acknowledged that relevant studies conducted prior to the last decade might have implemented additional tools that potentially have been omitted from this review. However, clinicians and researchers are encouraged to consider the results of the present review regarding implementation of the most appropriate PROMs to enhance communication of healthcare with people with lung cancer.
The challenge of providing supportive care in a disease such as lung cancer, which in many cases has a poor prognosis, is to identify individual needs early to enable appropriate interventions and support services to be offered.81 Paramount in this attempt is the use of SCN tools, which, apart from having established psychometric properties, also are brief, comprehensive, easily comprehensible, and acceptable to patients and clinicians. Despite recent advances in this area, development of specific SCN tools for use with patients with lung cancer is still in its infancy. Collaborative work among patients with lung cancer, health professionals, and researchers is required to ensure that an SCN tool not only is content-specific but also takes into consideration the reality of the contemporary lung cancer care.26
1. Ferlay J, Autier P, Boniol M, Heanue M, Colombet M, Boyle P. Estimates of the cancer incidence and mortality in Europe in 2006. Ann Oncol. 2007; 18:(3): 581–592.
2. Verdecchia A, Francisci S, Brenner H, et al. Recent cancer survival in Europe: a 2000-02 period analysis of EUROCARE-4 data. Lancet Oncol. 2007; 8:(9): 784–796.
3. Corner J, Hopkinson J, Fitzsimmons D, Barclay S, Muers M. Is late diagnosis of lung cancer inevitable? Interview study of patients’ recollections of symptoms before diagnosis. Thorax. 2005; 60:(4): 314–319.
4. Li J, Girgis A. Supportive care needs: are patients with lung cancer a neglected population? Psychooncology. 2006; 15:(6): 509–516.
5. Borneman T, Koczywas M, Cristea M, Reckamp K, Sun V, Ferrell B. An interdisciplinary care approach for integration of palliative care in lung cancer. Clin Lung Cancer. 2008; 9:(6): 352–360.
6. Steele R, Fitch MI. Why patients with lung cancer do not want help with some needs. Support Care Cancer. 2008; 16:(3): 251–259.
7. Maslow AH . Toward a Psychology of Being. 3rd ed. New York: Wiley; 1998; .
8. Minshull J, Ross K, Turner J. The human needs model of nursing. J Adv Nurs. 1986; 11:(6): 643–649.
9. Hill KM, Amir Z, Muers MF, Connolly CK, Round CE. Do newly diagnosed lung cancer patients feel their concerns are being met? Eur J Cancer Care (Engl). 2003; 12:(1): 35–45.
10. Valderas JM, Alonso J. Patient reported outcome measures: a model-based classification system for research and clinical practice. Qual Life Res. 2008; 17:(9): 1125–1135.
11. Basch E, Iasonos A, McDonough T, et al. Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events: results of a questionnaire-based study. Lancet Oncol. 2006; 7:(11): 903–909.
12. Broberger E, Tishelman C, von Essen L. Discrepancies and similarities in how patients with lung cancer and their professional and family caregivers assess symptom occurrence and symptom distress. J Pain Symptom Manage. 2005; 29:(6): 572–583.
13. Petersen MA, Larsen H, Pedersen L, Sonne N, Groenvold M. Assessing health-related quality of life in palliative care: comparing patient and physician assessments. Eur J Cancer. 2006; 42:(8): 1159–1166.
14. Dodd M, Janson S, Facione N, et al. Advancing the science of symptom management. J Adv Nurs. 2001; 33:(5): 668–676.
15. Cleeland CS, Sloan JA. ASCPRO Organizing Group. Assessing the Symptoms of Cancer Using Patient-Reported Outcomes (ASCPRO): searching for standards. J Pain Symptom Manage. 2010; 39:(6): 1077–1085.
16. Marshall S, Haywood K, Fitzpatrick R. Impact of patient-reported outcome measures on routine practice: a structured review. J Eval Clin Pract. 2006; 12:(5): 559–568.
17. Donaldson MS. Taking PROs and patient-centered care seriously: incremental and disruptive ideas for incorporating PROs in oncology practice. Qual Life Res. 2008; 17:(10): 1323–1330.
18. Bjordal K. Impact of quality of life measurement in daily clinical practice. Ann Oncol. 2004; 15:(suppl 4): iv279–iv282.
19. Donaldson MS. Taking stock of health-related quality-of-life measurement in oncology practice in the United States. J Natl Cancer Inst Monogr. 2004; (33): 155–167.
20. Bausewein C, Simon ST, Benalia H, et al. Implementing patient reported outcome measures (PROMs) in palliative care—users’ cry for help. Health Qual Life Outcomes. 2011; 9: 27
21. Garcia SF, Cella D, Clauser SB, et al. Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative. J Clin Oncol. 2007; 25:(32): 5106–5112.
22. Velikova G, Booth L, Smith AB, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol. 2004; 22:(4): 714–724.
23. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002; 288:(23): 3027–3034.
24. Meadows KA. Patient-reported outcome measures: an overview. Br J Community Nurs. 2011; 16:(3): 146–151.
25. Ousey K, Cook L. Understanding patient reported outcome measures (PROMs). Br J Community Nurs. 2011; 16:(2): 80–82.
26. Richardson A, Medina J, Brown V, Sitzia J. Patients’ needs assessment in cancer care: a review of assessment tools. Support Care Cancer. 2007; 15:(10): 1125–1144.
27. Osse BH, Vernooij-Dassen MJ, de Vree BP, Schade E, Grol RP. Assessment of the need for palliative care as perceived by individual cancer patients and their families: a review of instruments for improving patient participation in palliative care. Cancer. 2000; 88:(4): 900–911.
28. Wen KY, Gustafson DH. Needs assessment for cancer patients and their families. Health Qual Life Outcomes. 2004; 2: 11
29. Streiner DL, Norman GR . Health Measurement Scales: A Practical Guide to Their Development and Use. 4th ed. Oxford: Oxford Medical Publications; 2008; .
30. Bausewein C, Booth S, Gysels M, Kuhnbach R, Haberland B, Higginson IJ. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med. 2010; 13:(9): 1109–1118.
31. Buchanan D, Milroy R, Baker L, Thompson AM, Levack PA. Perceptions of anxiety in lung cancer patients and their support network. Support Care Cancer. 2010; 18: 29–36.
32. Fitch MI, Steele R. Supportive care needs of women with lung cancer. Can Oncol Nurs J. 2008; 18:(1): 1–8.
33. Fitch MI, Steele R. Supportive care needs of individuals with lung cancer. Can Oncol Nurs J. 2010; 20:(1): 15–22.
34. Graves KD, Arnold SM, Love CL, Kirsh KL, Moore PG, Passik SD. Distress screening in a multidisciplinary lung cancer clinic: prevalence and predictors of clinically significant distress. Lung Cancer. 2007; 55:(2): 215–224.
35. Sanders SL, Bantum EO, Owen JE, Thornton AA, Stanton AL. Supportive care needs in patients with lung cancer. Psychooncology. 2010; 19:(5): 480–489.
36. Schofield P, Gough K, Ugalde A, Dolling L, Aranda S, Sanson-Fisher R. Validation of the Needs Assessment for Advanced Lung Cancer Patients (NA-ALCP). Psychooncology. 2013; 21:(4): 451–455.
37. Schofield P, Ugalde A, Sharkey K, et al. Meeting needs of people with inoperable lung cancer through an innovative supportive care intervention: a randomised controlled trial. Asia Pac J Clin Oncol. 2009; 5:(suppl 2): A168
38. Turner NJ, Muers MF, Haward RA, Mulley GP. Psychological distress and concerns of elderly patients treated with palliative radiotherapy for lung cancer. Psychooncology. 2007; 16:(8): 707–713.
39. Wilcock A, Klezlova R, Coombes S, et al. Identifying supportive and palliative care needs in people with a recent diagnosis of thoracic cancer: acceptability of the SPARC questionnaire. Thorax. 2010; 65:(10): 937–938.
40. Devlen J . Psychological and Social Aspects of Hodgkins Disease and Non-Hodgkins Lymphoma. Manchester: University of Manchester; 1984; .
41. Heaven CM, Maguire P. Training hospice nurses to elicit patient concerns. J Adv Nurs. 1996; 23:(2): 280–286.
42. Heaven CM, Maguire P. The relationship between patients’ concerns and psychological distress in a hospice setting. Psychooncology. 1998; 7:(6): 502–507.
43. Rainbird KJ, Perkins JJ, Sanson-Fisher RW. The Needs Assessment for Advanced Cancer Patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. a study of validity, reliability and acceptability. Psychooncology. 2005; 14:(4): 297–306.
44. Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999; 8:(4): 219–227.
46. Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A.. Evaluation of an instrument to assess the needs of patients with cancer. Supportive Care Review Group. Cancer. 2000; 88:(1): 217–225.
47. McElduff P, Boyes A, Zucca A, Girgis A . The Supportive Care Needs Survey: A Guide to Administration, Scoring, and Analysis. Newcastle: Center for Health Research and Psychology; 2004; .
48. Ahmed N, Bestall JC, Payne SA, Noble B, Ahmedzai SH. The use of cognitive interviewing methodology in the design and testing of a screening tool for supportive and palliative care needs. Support Care Cancer. 2009; 17:(6): 665–673.
49. Ley P, Florio T. The use of readability formulas in health care. Psychol Health Med. 1996; 1: 37–47.
50. Lam WW, Au AH, Wong JH, et al. Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer. Breast Cancer Res Treat. 2011;130(2):531–541; .
51. Brown ML, Lipscomb J, Snyder C. The burden of illness of cancer: economic cost and quality of life. Annu Rev Public Health. 2001; 22: 91–113.
52. NICE. Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer - The Manual. London: National Institute for Health and Clinical Excellence (NICE); 2004; .
53. Cossich T, Schofield P, McLachlan SA. Validation of the Cancer Needs Questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res. 2004; 13:(7): 1225–1233.
54. Carr A, Hewlett S, Hughes R, et al. Rheumatology outcomes: the patient’s perspective. J Rheumatol. 2003; 30:(4): 880–883.
55. Ruland CM. Improving patient outcomes by including patient preferences in nursing care. Proc AMIA Symp. 1998; : 448–452.
56. Ruland CM, Kresevic D, Lorensen M. Including patient preferences in nurses’ assessment of older patients. J Clin Nurs. 1997; 6:(6): 495–504.
57. Fortner B, Okon T, Schwartzberg L, Tauer K, Houts AC. The Cancer Care Monitor: psychometric content evaluation and pilot testing of a computer administered system for symptom screening and quality of life in adult cancer patients. J Pain Symptom Manage. 2003; 26:(6): 1077–1092.
58. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer. 2000; 88:(1): 226–237.
59. Foot G, Sanson-Fisher R. Measuring the unmet needs of people living with cancer. Cancer Nurs. 1995; 12: 131–135.
60. Girgis A, Boyes A, Sanson-Fisher RW, Burrows S. Perceived needs of women diagnosed with breast cancer: rural versus urban location. Aust N Z J Public Health. 2000; 24:(2): 166–173.
61. Wingate AL, Lackey NR. A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nurs. 1989; 12:(4): 216–225.
62. Ruland CM. Decision support for patient preference-based care planning: effects on nursing care and patient outcomes. J Am Med Inform Assoc. 1999; 6:(4): 304–312.
63. Ruland CM. Handheld technology to improve patient care: evaluating a support system for preference-based care planning at the bedside. J Am Med Inform Assoc. 2002; 9:(2): 192–201.
64. Ruland CM, White T, Stevens M, Fanciullo G, Khilani SM. Effects of a computerized system to support shared decision making in symptom management of cancer patients: preliminary results. J Am Med Inform Assoc. 2003; 10:(6): 573–579.
65. Crooks DL, Whelan TJ, Reyno L, et al. The Initial Health Assessment: an intervention to identify the supportive care needs of cancer patients. Support Care Cancer. 2004; 12:(1): 19–24.
66. Tamburini M, Gangeri L, Brunelli C, et al. Cancer patients’ needs during hospitalisation: a quantitative and qualitative study. BMC Cancer. 2003; 3: 12
67. Tamburini M, Gangeri L, Brunelli C, et al. Assessment of hospitalised cancer patients’ needs by the Needs Evaluation Questionnaire. Ann Oncol. 2000; 11:(1): 31–37.
68. Scandrett KG, Reitschuler-Cross EB, Nelson L, et al. Feasibility and effectiveness of the NEST13+ as a screening tool for advanced illness care needs. J Palliat Med. 2010; 13:(2): 161–169.
69. Emanuel LL, Alpert HR, Emanuel EE. Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool. J Palliat Med. 2001; 4:(4): 465–474.
70. Wessels H, de Graeff A, Wynia K, et al. Medical oncology patients’ preferences with regard to health care: development of a patient-driven questionnaire. Ann Oncol. 2009; 20:(10): 1708–1713.
71. Osse BH, Vernooij-Dassen MJ, Schade E, Grol RP. A practical instrument to explore patients’ needs in palliative care: the Problems and Needs in Palliative Care Questionnaire Short Version. Palliat Med. 2007; 21:(5): 391–399.
72. Osse BH, Vernooij MJ, Schade E, Grol RP. Towards a new clinical tool for needs assessment in the palliative care of cancer patients: the PNPC instrument. J Pain Symptom Manage. 2004; 28:(4): 329–341.
73. Cull A, Stewart M, Altman DG. Assessment of and intervention for psychosocial problems in routine oncology practice. Br J Cancer. 1995; 72:(1): 229–235.
74. Wright EP, Selby PJ, Gould A, Cull A. Detecting social problems in cancer patients. Psychooncology. 2001; 10:(3): 242–250.
75. Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract. 2009; 15:(4): 602–606.
76. Pigott C, Pollard A, Thomson K, Aranda S. Unmet needs in cancer patients: development of a supportive needs screening tool (SNST). Support Care Cancer. 2009; 17:(1): 33–45.
77. Lidstone V, Butters E, Seed PT, Sinnott C, Beynon T, Richards M. Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliat Med. 2003; 17:(7): 588–595.
78. Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors’ Unmet Needs measure). Psychooncology. 2007; 16:(9): 796–804.
79. Coyle N, Goldstein ML, Passik S, Fishman B, Portenoy R. Development and validation of a patient needs assessment tool (PNAT) for oncology clinicians. Cancer Nurs. 1996; 19:(2): 81–92.
80. Campbell HS, Sanson-Fisher R, Taylor-Brown J, Hayward L, Wang XS, Turner D. The Cancer Support Person’s Unmet Needs Survey: psychometric properties. Cancer. 2009; 115:(14): 3351–3359.
81. Schofield P, Ugalde A, Carey M, et al. Lung cancer: challenges and solutions for supportive care intervention research. Palliat Support Care. 2008; 6:(3): 281–287.
Healthcare needs; Lung cancer; Patient-reported outcome measures; Supportive care; Systematic review
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