2. MARCO TEÓRICO
2.8. Interrogantes de la investigación
Annex 1. Research methods: A technical report
This study comprised three separate parts, involving three very distinct research methods. These have been summarised in the first section of the Report, but are set out in detail here
1. The Literature Review
The aim of the literature review was to identify and appraise a set of tools currently available to support patient assessment in routine cancer care (or identify needs assessment tools for use in cancer care). Our aim was to undertake a rapid appraisal that was sufficiently comprehensive to identify existing research, as well as gaps in the field; we also sought to identify methodological and clinical issues requiring
consideration when developing tools in future. The review was undertaken as
systematically as time allowed, following the general principles outlined in Glasziou’s Systematic Review Guide87, but was never intended to be a comprehensive review.
Search strategy
Electronic databases were searched for relevant papers across the period 1984-2004, with papers limited to those in the English language (See Table A1). Additional
sources included the reference lists of relevant papers and personal communication with experts.
Table A1. Electronic databases searched
Databases searched Issues or dates
British Nursing Index 1985 to November 2004
Cinahl 1982 to December Week 1 2004
Cochrane Database of Systematic Reviews
4th Quarter 2004
Embase 1988 to 2004 Week 49
Medline 1966 to November Week 3 2004
Educational Resources Information Centre (ERIC) – British Education Index
1976 to September 2004
Search terms were located by exploring the topics ‘cancer’ ‘patient participation’, ‘patient centred’ and ‘assessment’ in the thesaurus and index lists of the relevant databases. ‘Free text’ words were used to supplement the search terms (See Table A2).
Table A2. Search terms
Terms search for as: Medical Subject Headings (MeSH) Free text Assessment • Cancer • • Cancer Care • Cancer Nursing • Cancer Patient • Cancer Services •
Clinical Assessment Tools •
Evaluation •
Functional Assessment •
Health and Quality of Life •
Medical Assessment •
Medical Records and Information Systems •
Needs Assessment •
Nursing Assessment •
Nursing Assessment and Diagnosis •
Nursing Care and Practice •
Oncologic Care •
Oncology •
Oncology Service •
Oncolog$ •
Outcome Assessment •
Outcomes (Health Care) •
Outcomes and Prognoses •
Paediatric Cancer Care •
Pain Measurement •
Palliative Care •
Patient Assessment •
Patient Care Planning •
Patient Centred • •
Patient Centred Care •
Patient Evaluation • Patient Focused • Patient Participation • Patient Satisfaction • Patient-Centred Care • Psychologic Assessment • Psychology •
Table A2 continued
Terms search for as: Medical Subject
Headings (MeSH) Free text
Quality of Life •
Questionnaires •
Rating Scale •
Self Assessment (Psychology) •
Self Care • •
Self Evaluation • •
Self Help • •
Symptom Assessment • •
$ = Term truncated
Note: All MeSH terms were ‘exploded’ to cover subcategories
The database searches were performed using terms identified in Table A2 and combined as indicated in Table A3.
Table A3. Core Search strategy
Group A Group B Group C
OR OR OR Cancer Cancer Care Cancer Nursing Cancer Patient Cancer Services Nursing Care and Practice Oncologic Care Oncology Oncology Service Oncolog$ Paediatric Cancer Care Palliative Care A N D Patient Assessment Patient Care Planning Patient Centred Patient Centred Care Patient Evaluation Patient Focused Patient Participation Patient Satisfaction Patient-Centred Care Self Assessment (Psychology) Self Care Self Evaluation Self Help A N D Assessment
Clinical Assessment Tools Evaluation
Functional Assessment Health and Quality of Life Medical Assessment Medical Records and Information Systems Needs Assessment Nursing Assessment Nursing Assessment and Diagnosis
Outcome Assessment Outcomes (Health Care) Outcomes and Prognoses Pain Measurement Psychologic Assessment Psychology Quality of Life Questionnaires Rating Scale Symptom Assessment
First, all terms related to Cancer (Group A) were combined using the “OR” function; all terms relating to patient centred/focused etc (Group B) were combined using the “OR” function; and all terms relating to assessment tools (Group C) were combined using the “OR” function. Second, the results of the three grouped searches (A, B & C) were combined using the “AND” function.
References were stored and managed using bibliographic software (Endnote).
Inclusion criteria
The review focused on tools for the systematic assessment of the needs for help, care or support of individual patients. Our focus was solely tools for use in clinical care, in contrast to other reviews and texts which include tools for research on quality of life assessment and outcome measures from cancer and palliative care88-92. Moreover, we were not concerned with tools focused on a single domain of care (such as symptom assessment or psychosocial needs). Papers identified from the searches were sorted according the inclusion and exclusion criteria specified in Table A4.
Table A4. Inclusion and exclusion criteria applied to articles retrieved from initial search
Included Excluded • Empirical studies citing details of
development of a generic needs assessment tool
• Studies of adult patients with cancer as subjects
• Studies of tools designed to assess experienced needs for care in the context of individual patient application
• Tools about one type of need only (eg, the need for information or in relation to symptoms) as these were considered too specific for a general overview assessment
• Tools concerned with assessing health-related quality of life in the context of group level application • Tools assessing patients’ opinions on the quality of care received from professionals
• Tools designed originally for purposes other than needs assessment
• Tools for which there was
insufficient information to conduct an appraisal
Studies identified through the search strategy were assessed for inclusion. Titles and abstracts of studies were screened for inclusion by one reviewer (JM), with decisions checked by a second (AR). Where the relevance of a paper was not clear, the full text was retrieved and content examined by both reviewers to determine if it met the
Figure A1 outlines the number of articles identified and those subsequently intensively reviewed.
Figure A1. Flow chart summarising number of studies identified and ultimately included
15 tools were yielded from 1803 multiple reports.
In summary, a total of 1803 papers were identified by electronic search strategies, once duplicate studies were identified and removed. After abstract and title
assessment, and application of the inclusion criteria, 25 potentially eligible studies were identified. This was augmented by studies identified by experts and the bibliographies of relevant papers, with an additional 100 eligible studies were generated in this way. After further assessment, data concerning 36 tools were extracted and reviewed and, using the specified inclusion criteria, 15 tools were identified. These tools are listed in Table 1 of the main text.
Abstracts inspected n = 1609
(Ci=909, E=80, M=570, Co=50)
Excluded on basis of title n = 186 Full copies of papers retrieved
n = 25
(BNI-8, Cinahl-9, Embase-1, Medline-7, Cochrane-0)
Papers not retrieved n = 1778 Papers inspected n = 125 Papers excluded n = 34 Tools in review n = 15
Papers Identified on searching n = 1803
(BNI=194, Cinahl=909, Embase=80, Medline=570, Cochrane=50, Eric=0)
Additional papers found through: • Hand searching • Contact with experts • Personal knowledge of field n = 100 Tools Identified n = 36 Tools excluded n = 21 Excluded on basis of abstract n = 1592 Titles inspected n = 1609
(BNI=194. Abstracts not available)
Relevant papers n = 91
A number of tools fell at the margins of the review and after careful examination were excluded. These included:
• the Palliative Care Assessment Tool (PACA)54; • the Palliative care Outcome Scale (POS)93; and
• the Support Team Assessment Schedule (STAS)94.
These tools were all developed principally as outcome measures to assess the effectiveness of palliative care interventions or specifically for audit purposes (STAS); • the Cancer Patient Need Survey (CPNS)95 and
• the Psychosocial Needs Inventory (PNI)96.
These were both developed as part of a survey and not conceived nor used (as far as published reports can indicate) as a tool for clinical assessment.
A brief description of these tools is provided in Annex 5 as a reference source.
Data extraction and analysis
Papers which met the inclusion criteria were read and summarised by the research team using a structured data extraction form. These data were tabulated and appraised.
Appraisal criteria
We appraised each tool against a range of properties suggested in the literature as pertinent to whether a tool might be suitable for routine use. These properties were drawn from a number of sources65 80 81 97, as no criteria are consistently defined and the literature fails to summarise them in clear, explicit and unambiguous terms. The properties against which to assess tools, if they are to be used with any degree of confidence in routine practice, are described in Box A1. In addition to validity and reliability, these include responsiveness to change, feasibility (including evidence on acceptability as well as burden on both patients and professionals), intended purpose and administration method.
Box A1. Properties required of tools proposed for use in routine clinical practice Validity
Involves judging whether a tool measures what it intends to measure Reliability
Requires that a tool is reproducible and internally consistent Appropriateness
Considers the match between specific purpose, population and setting for which a tool was developed and intended use
Responsiveness to change
Addresses whether a tool is sensitive to changes of importance to patients and detects clinically meaningful change
Feasibility
Addresses the extent of effort, burden and disruption to staff and clinical care arising from use of a tool
Acceptability
Considers how acceptable a tool is for respondents to complete
Each tool was assessed in terms of the following aspects.
Purpose: We identified the tool’s original intended use(s) and application. Question format: The tool’s response format was reported.
Validity: This was ascertained by establishing the content and cover of the spectrum
of possible problems and needs and assessing each tool’s main target: need for care, health status (or satisfaction). The number of items and domain structures were summarised. Precise content was ascertained by classifying the items of a
questionnaire along dimensions of need for care. This followed a similar approach to Osse et al70 who split these between needs related to health related quality of life and problems in the quality of care. The current review mapped content on needs related to a) health status (see Box A2 for list of domains and examples) and b) needs for and satisfaction with health care (see Box A3 for list of domains and examples).
We chose this approach because the tool dimensions as presented by the authors could not be compared. Needs related to health-related quality of life were adapted from Fitzsimmons98 and Ahmedzia42 and problems in relation to quality of care from McCusker99 and Wiggers et al100. Two further points must be noted. First, there are
no discrete domains: the psychological well being of a person, for example, can have a considerable impact on physical functioning and social well-being. Second, there is no hierarchy to these domains.
Box A2. Domains used to compare tool content and number of items: needs related to health status
Domain Examples Disease symptoms and treatment
related side effects
Pain Fatigue Dyspnoea Appetite
Nausea and vomiting Constipation
Physical functioning Mobility
Self-care activities such as washing and dressing
Activities of daily living such as household chores, meal preparation Physical activity
Disability Psychological well being Depression
Anxiety
Adjustment to illness Coping
Fear
Self esteem
Body image and sexuality Life satisfaction
Spiritual well being Concerns with meaning/purpose of life
Concerns about death and afterlife Conflicted or challenged belief system Cultural concerns
Cognitive Confusion Memory
Concentration
Social Partner relationships
Family relationships Coping with children
Ability to carry out hobbies, interests, leisure activities
Occupational Work Financial status and sources of financial support and assistance
Global assessment Global health
Box A3. Domains used to compare tool content and number of items: needs for and satisfaction with health care
Domain Examples Participation in care, involvement in
decision making and information provision
Preferred degree of involvement Adequacy of information provision re: diagnosis, treatment and investigations
Opportunity to ask questions Accessibility of care, help and support Proximity of service to home Transport to and from clinic Home care provision
Provision of equipment, aids and appliances in the home
Flexibility of care delivery Choice over clinic appointment time Choice over location of treatment Continuity of care Healthcare professional aware of previous history and experience Seeing same doctor at consultation Co-ordination
Health care professionals technical competence, interpersonal skills and availability
Technical competence Adequacy of explanation Available at time of need
Waiting times At clinic
For an appointment
Environment of care Cleanliness
Space
Privacy/dignity Diagnosis disclosed in private Support and help for family
members/carers
Information for family members Emotional support
Support for caregivers at home General satisfaction with care
Validity was studied by investigating the methods used to identify the problems and
needs included in the tools (e.g. interviews, expert panels, literature reviews) and the results of any empirical validation of the tools.
Reliability was examined in terms of internal consistency and test-retest
reproducibility. The aim of the former was to understand whether the items correlate with each other within the tool; the aim of the latter was to assess whether the tool produced stable scores over time. The time interval between administrations was noted.
Responsiveness was assessed through examining a tool’s ability to detect change
over time through recourse to data that might demonstrate changes in needs, such as that accrued as result of clinical trial or cohort study.
Feasibility was gauged through examining a range of features, including number of
any data on acceptability, availability in different formats (i.e. computer and paper and pencil and different languages) and the administration method, either self-report or healthcare professional interview.
Some comments
Because of the rapid nature of this review, we will not have identified every relevant study to date. Searching by electronic databases produced only 25 papers. Other sources, such as suggestions from experts, hand searching and personal knowledge of field, elicited an additional 94 papers. No consistency was found in the way studies on this topic are indexed, making the search very labour intensive because it
generated a large number of references of which only a few then proved relevant. Papers were excluded if they assessed a patient’s preference for only one aspect of care (e.g. complementary therapies, involvement in decision-making), as these were seen as too specific for inclusion in a review of systematic assessment tools.
Similarly, articles about satisfaction with services at specific institutions were excluded. Papers that assessed needs through open interviews, with no tool or guide for use by other healthcare professionals who might wish to produce a needs assessment, were also excluded.
2 The Scoping Exercise
Aim
The aim of the scoping exercise was, first, to explore the stage reached by cancer networks in developing a unified approach to patient needs assessment. It aimed to explore how networks are moving forward in this area including: whether networks have developed and implemented network wide policy or guidance in this area,
whether leads have been identified to take the area forward within the network and the areas leads are currently looking at.
Secondly, the research aimed to identify tools or approaches currently being used to assess patient needs within cancer networks, to explore the nature and scope of those assessments, and the way tools have been selected and used within clinical practice.
Design and method
The scoping exercise involved a two-part e-mail survey of the 34 cancer networks in England. In March 2005, two questionnaires in electronic format (A and B), together with a covering letter, were sent by email to the Network Nurse Director of each cancer network. Questionnaire A was very short and asked networks to describe the stage they had reached in developing a unified approach to patient needs
assessment. It also asked networks to identify any assessment tools or approaches that they were considering for adoption across the network, as part of a unified
approach, or that they considered particularly useful. Questionnaire B asked questions about the purpose, content and process of administration of specific tools or
Network Nurse Directors were asked to complete questionnaire A themselves and to forward questionnaire B to colleagues best able to answer more detailed questions about the specific tools or approaches. These identified colleagues were asked to complete questionnaire B and return it with a copy of the tool or approach under discussion.
Networks were asked to complete a questionnaire B for each tool or approach
identified. Networks that felt they could not identify any tools or approaches were able to report this in questionnaire A. Both questionnaires were piloted at two cancer networks prior to being sent out.
Limitations
The survey method was chosen for this activity as it provides an efficient way of gathering information from a large number of sources within a limited time frame. It is important to acknowledge that the information yielded by such an approach can provide only a snapshot of the activity of the cancer networks in this area. A reasonable response rate was achieved, however; seven cancer networks are not represented in the report provided.
The information provided by networks highlighted a wealth of detail about how patient needs assessment is being approached at a network level. The information provided about the assessments currently being used by networks, however, is limited to those assessments networks felt would contribute to a network wide assessment or were particularly successful rather than every assessment in use across the network. The decision about which assessments to report was made in a number of ways. Some networks had already undertaken some work to identify assessments within the network so Network Nurse Directors were able to respond on behalf of the network. In others, Nurse Directors felt unable to identify pertinent assessments themselves and referred to leads or working groups for this area. Still other Nurse Directors passed the request onto all the nursing leads for the organisations within the network and asked them to respond on behalf of their organisation.
The ease with which networks were able to identify pertinent assessments may reflect the stage the network had reached in developing this area. Some networks were easily able to identify assessment approaches, while others were at an early stage of scoping activity. A small number of networks reported they were using this exercise in order to gain a picture of the assessments in use within their network and take the area forward.
The approach taken by each network is likely to have influenced the clinical areas or groups providing details of their assessments. For example, networks taking the approach of requesting nursing leads for organisations within the network to respond directly are likely to have focused on assessment in the acute settings in which the nursing leads are based, rather than in community settings and general practice. The nature of the development of assessments locally resulted in a variety of
assessment tools and approaches being reported. Many assessments represented a