NDT Advance Access originally published online on March 17, 2007
Nephrology Dialysis Transplantation 2007 22(8):2291-2296; doi:10.1093/ndt/gfm095
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Evaluating the quality of patient leaflets about renal replacement therapy across UK renal units
1Institute of Psychology, 2Institute of Health Sciences, University of Leeds and 3Adult Renal Services, St James University Hospital, Leeds, UK
Correspondence and offprint requests to: Anna Winterbottom, Institute of Psychological Sciences, University of leeds, LS2 9JT, UK. Email: anna{at}winterbottom.co.uk
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Abstract |
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Background. Enhancing patient participation is a priority for renal services. Good quality information is fundamental to facilitate patient involvement, but in other health contexts it has been found to be sub-optimal. This research aims to audit the provision of patient information by renal units and charities and to assess the quality of written information about dialysis treatment options.
Methods. All UK renal units were sent a questionnaire about the patient information they provided. Renal units and charities that provided dialysis leaflets were asked to forward copies. Leaflet quality and content were assessed by a coding frame informed by information and decision aid checklists.
Results. Out of 105, 67 completed questionnaires were returned. Services provide patients with large amounts of information in several media (leaflets, meetings with nurses and patients, videos); computers were not used frequently. Out of 47, 32 units forwarded leaflets about dialysis, and 31 different leaflets. Most leaflets were difficult to understand and rarely included risk information or treatment limitations. No leaflets included techniques to assist patient involvement or decision-making; their primary goal was to inform.
Conclusions. These data suggest an unsystematic pattern of information provision across the UK. Vast resources have been spent on providing information to patients that is difficult to comprehend and incomplete. Research needs to identify which resources are effective in meeting patient needs and at what point in their illness. A centralized system to guide renal services in the design and development of information resources may help meet the differing goals of education, choice facilitation and preparation for self-management.
Keywords: decision-making; end-stage renal failure; patient involvement; written information
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Introduction |
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Patient involvement in their illness management is a key policy objective [1,2]. Service providers should be supporting patients to make treatment choices and to play an active role in the management of their care [2,3]. Providing good quality, written information is an essential resource to attain these objectives [4]. Good quality information should be accessible, readable, comprehensible, accurate, balanced and comprehensive in description, recently updated, evidence based, written by credible authors and identify sources for further information [4–7]. Also, information resources should be clear about their purpose or goal, e.g. to educate and/or prepare patients for procedures, to facilitate decision-making between treatment options, to encourage participation within consultations and/or enable shared decision-making [6]; different intervention objectives require different content, structure, timing and measures of effectiveness (Table 1). Within UK renal services, enhancing patient participation through the provision of patient information is a priority [8]. However, there are no formal guidelines to inform the development of patient resources and/or to assess the quality, source and amount of information patients receive about renal services. Furthermore, there is little evidence on what resources are useful for which objectives and at what point in the patient's journey. For example, all patients with end-stage renal failure make decisions about renal replacement therapy (RRT), but there is little evidence on which resource will effectively (i) inform patients about RRT options, (ii) help patients make an informed decision between RRTs and/or (iii) prepare patients for coping with and managing their chosen RRT. Evaluations of patient information in other contexts suggest information is seldom of sufficient quality to achieve goals of patient involvement [4,9,10]. It is essential to standards of care that good quality information is provided if patients are to be involved effectively in the management of their renal disease.
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This research aims (a) to audit the provision of patient information by Renal Units and Renal Charities and (b) to assess the quality of written information about dialysis treatment options. The first aim will provide an overview on the range of information offered to UK patients with end-stage renal failure (ESRF). The second aim will provide evidence about the quality of written patient information.
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Methods |
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Context
There are established networks, charities, services and pharmaceutical companies that provide information for renal patients, but it is unclear if the same type and quality of information is provided uniformly nationwide. NHS services are currently delivered through main and satellite units. Main units are renal centres with permanent medical personnel in attendance, from which renal services are administered. These are the units that patients attend in the pre-dialysis phase of their illness when treatment choices are made. Satellite units are smaller centres that patients attend when receiving dialysis, which may not be permanently staffed by medical personnel. Each main unit has responsibility for several satellite units. All units identified as main units were approached to take part in this research.
Design
This is a cross-sectional survey of renal units’ information provision. Data were collected in two stages: first, all main units were contacted and sent an audit questionnaire; second, those stating they provided written information about dialysis treatment options and the three leading UK-based renal charities, were requested to forward copies of their written information about dialysis. Ethical approval was granted by the University of Leeds—Institute of Psychological Sciences Ethics Committee, 2004.
Sample
The 107 main units identified by the UK Renal Association and three UK Renal Charities (National Kidney Federation; National Kidney Research Fund; British Kidney Patient Association) were contacted about the study.
Materials
- Invitation letter describing study aims and contact details.
- Audit questionnaire assessing the type and format of information provided (e.g. leaflets, workshops, consultations, etc). Items were piloted in two local renal units and modified accordingly (Appendix A; supplementary material).
- Flesch readability formula [11] was used to measure comprehensibility of leaflet (0–100; difficult–easy to comprehend).
- Coding frame developed with reference to renal policy guidelines [8] and checklists of content, style and formatting known to be associated with written information quality and decision-making facilitation [5,12,13]. Providing information about six content areas was identified as necessary to ensure patients’ understanding of ESRF and its treatment: (1) ESRF pathology; (2) haemodialysis (HD); (3) continuous cycling peritoneal dialysis (CCPD); (4) continuous ambulatory peritoneal dialysis (CAPD); (5) conservative care; (6) kidney transplant. Within each area, the content was coded in terms of the advantages, disadvantages and procedural information. Leaflets were further coded for risk presentation (verbal, numeric, percentages, common denominators), evidence base (reference to primary and secondary empirical data), framing and value judgements (neutral, positive, negative), decision facilitation (explicitly stating the decisions to be made, use of a decision tree, value elicitation, balance of sections) and format of information (font size, length of leaflet, use of present tense). For each item in the final coding frame, a leaflet could score ‘0’ or ‘1’, ‘1’ if the item appeared in the leaflet. The overall leaflet quality score was calculated by adding up the points in each content area, approximately 20 per content area; a leaflet including information about all six content areas could attain a maximum quality score of 135.
Procedure
Questionnaires were posted to members of staff identified as being responsible for pre-dialysis education in the unit. Respondents returned the questionnaire in stamped addressed envelopes (SAE). Reminder questionnaires were sent three weeks later. Those units that consented to be contacted again, and the three leading renal charities, were requested by letter to forward a copy of the written information they provided on dialysis modality. Two reminder letters and SAEs were sent out. The coding frame in the form of a checklist was piloted on two leaflets to check for the appropriateness of the items. It was then systematically applied to each of the leaflets by the first author (AW), to provide an overall score of the quality of the content of each leaflet.
Analysis
Data were managed using the Statistical Package for the Social Sciences (SPSS). Frequency data summarized the responses from the audit questionnaire and leaflets’ content analysis. Data from the two pilot questionnaires were excluded from the audit questionnaire summary because of differences in items after piloting, but the leaflets provided by these units were included in the content and quality analysis.
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Results |
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Audit of information provision across UK renal services
A flow chart of the response rates from renal units is illustrated in Figure 1.
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Twenty-two questionnaires were completed and returned but could not be identified as insufficient information had been included by the respondent. The geographical locations of the 45 identifiable renal units were: England (n = 32); Scotland (n = 6); Wales (n = 4); and Northern Ireland (n = 3). Thirty-nine of the responses were from main units and six were from satellite units. The units were based within both teaching (n = 28) and non-teaching hospitals (n = 17). Data from the 67 completed questionnaires are summarized as follows.
Written information was provided by all renal units: all (67/67) provided written information about HD, 97% (65/67) on peritoneal dialysis (PD), and 94% (63/67) on renal transplants. Most units reported providing written information about ESRF (93%; 62/67) and treatment options (96%; 64/67) in general. Two-thirds (45/67) provided written information about conservative care, i.e. choosing not to receive RRT; both doctors (84%; 56/67) and nurses (94%; 63/67) were reported to deliver this option verbally to patients. Written information was also provided about lifestyle changes and fluid restrictions (73%; 49/67).
Units reported delivering information in various face-to-face sessions over and above routine consultations: meetings with a dialysis nurse (95%; 64/67); meetings with other patients on dialysis (94%; 63/67) and with transplants (84%; 57/67); home visits by the renal team (81%; 54/67); attending workshops (70%; 47/67). Nurses reported providing more verbal information on all aspects of RRT and illness management than doctors.
Video-taped information was provided by about two-thirds of units, mainly about HD (64%; 43/67), PD (72%; 48/67) and RRT options in general (60%; 40/67). Very few units provided computerized information; 16% on renal transplant, 6% on HD, PD, treatment options, ESRF, 3% on conservative care and 5% on lifestyle changes. Between 13 and 30% of nurses accessed web sites to print-out information for patients, and about one-third recommended patients access the National Kidney Federation website and/or kidney patient associations.
Assessing the quality of patient leaflets
Out of 47, 32 units plus the three charities provided copies of their leaflets about dialysis. Each unit provided about three different leaflets (median = 3; mean = 2.6, SD = 1.3). Eleven units provided leaflets summarizing all treatment options. Fourteen units provided both general leaflets and leaflets that explained a specific treatment option in more detail. Six units and three charities, provided one or more leaflets about specific treatment options.
In total, 31 different leaflets were provided; 18 (57%) summarized general information about treatment options, four (13%) described HD only, four (13%) PD only, three (10%) renal transplants only and two (7%) conservative care only. The mean readability score for all 31 leaflets was 48/100, a readability equivalent to Life Insurance Policies, i.e. very hard to comprehend [14] (Table 2).
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The visual presentation of leaflet information was fair: use of short paragraphs (n = 19), an appropriate length (n = 27), bullet or numbered points (n = 17), clear headings (n = 27) and use of the active tense (n = 31). Only two leaflets included references for their information sources, none included a year of publication and no leaflet alluded to information derived from scientific papers or systematic reviews. Overall, leaflets were written objectively (n = 30) and did not contain value terms (e.g. good or bad; n = 31). Most leaflets balanced the description of advantages and disadvantages of treatment options; there was a tendency to emphasize only the good points of CAPD, or HD, without describing any limitations. In addition, in seven leaflets a treatment option was identified as the optimum choice. A minority of leaflets presented risk information as verbal expressions (e.g. high or low risk; n = 1) or numerically (e.g. 1 expressed as a percentage; n = 8). No leaflets provided techniques to assist the patients in making decisions, for example, stating who has responsibility for decision-making, the time line of decisions, decision trees and utility elicitation techniques. The quality of leaflets by content area is discussed subsequently.
General information on treatment options leaflets
The eighteen leaflets about ESRF and treatment options in general all included brief sections about ESRF, HD, CAPD and transplant. The following quality scores for sections were given: ESRF average 13 (SD 5.2) out of 22; HD average 6 (SD 2.3) out of 20; CAPD average 7 (SD 2.2) out of 20; transplant average 6 (SD 2.0) out of 20. Eleven of the leaflets mentioned CCPD, with an average 3 (SD 1.6) out of 7. Twelve of the 18 leaflets mentioned conservative care, with an average quality score of 3 (SD 1.3) out of 5. A minority recommended one particular treatment (n = 2). Few leaflets included risk information in numbers (n = 5) or as verbal expressions (n = 5). Few leaflets included a table and/or illustrated a technique to help people weigh up the advantages and disadvantages of different options (n = 1).
HD leaflets
The average quality score for the four HD leaflets was 12 (SD 3.1) out of 20. Two of these leaflets provided information about kidney transplants (average quality score 3/20, SD 1.4); none alluded to the other treatment options. Half (n = 2) suggested HD as being the optimal choice for patients. None included any risk information. In most, harms and benefits of treatment options were provided in a balanced way (n = 3) but no techniques were used to help patients elicit their personal views, e.g. a decision tree representing treatment options and consequences.
PD leaflets
The average quality score for the four PD leaflets was 11 (SD 5.7) out of 20. None of the leaflets dealt with CAPD and CCPD separately even though they are often regarded as different treatment options. Brief information relating to HD and transplants was mentioned in one leaflet. The majority did not suggest PD as being the optimal choice (n = 3). None included any risk information. Half provided a balanced view of the harms and benefits of each treatment option (n = 2) but none provided a visual representation.
Kidney transplantation leaflets
The average quality score for the three leaflets about kidney transplant was 7 (SD 4.2) out of 20. No reference was made to the other treatment options. All risks associated with kidney transplant were expressed numerically (n = 3), none was presented verbally. Most stated kidney transplant was the most desirable treatment option (n = 2). Most presented the benefits and harms in a balanced way (n = 2) but none used tables and/or other techniques to help people weigh up the advantages and disadvantages of different options.
Conservative care
Two leaflets focused specifically on conservative care, their average quality score was 3 (SD 1.4) out of 5. A small amount of information was included in these leaflets about other treatment options. All information was framed in a negative manner. Neither leaflet presented any risk information nor a description of the pros and cons of different treatment options.
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Discussion |
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This study provides evidence on the amount and quality of information provided to patients with ESRF. The audit illustrated that ESRF services provide patients with access to a wealth of information giving opportunities over and above their routine consultations including home visits, meeting with other patients and one-to-one discussions with the renal nurses. However, there was variation between services; 1 in 3 units did not offer workshops and 1 in 5 did not offer home visits by the renal team. All units provided patients with ‘take-away’ information either in the form of leaflets and/or videos. Again, there was variation between services with 1 in 3 providing no supporting literature on conservative care. The in-depth analysis of leaflets provided by NHS services, charities and pharmaceutical companies indicated that there have been at least 31 different leaflets developed in the UK to provide information about RRT options. The rating of leaflets for literacy indicated most resources were very hard to comprehend. Furthermore, some key information about the risks and benefits, and range of options available, was missing from leaflets and/or could only be accessed by reading a further leaflet. The goal of most leaflets was unclear but as no leaflets provided techniques to help patients evaluate the information, it seems likely that the primary purpose of leaflets was to inform or educate.
Current renal guidelines suggest that patient information should (i) inform patients about ESRF treatment options and/or (ii) assist in decision-making about treatment options [8]. The implicit purpose of leaflets analysed within this study was to educate or inform patients about treatment options. Information aids can be effective in increasing patient knowledge, reducing anxiety and improving satisfaction with procedures when information is comprehensible, accurate and evidence-based [4,13–16]. As most leaflets in this analysis were rated as very hard to understand and, in some cases, as incomplete, it is unlikely these current resources are informing patients as efficiently as possible. Individual needs of patients such as differences in levels of literacy are not addressed in the provision of information. No leaflets in this analysis explicitly referred to supporting patients in making their decisions about treatment options. Interventions aiming to facilitate patient decision-making and/or active involvement in disease management need to be more complex than information aids (Table 1). To facilitate decision-making, information about risks and benefits of all treatment options should be presented in a way that minimizes bias in information processing and includes techniques to help patients identify the decision to be made and to evaluate explicitly their values about the decision outcomes [16]. It seems unlikely that these leaflets are of sufficient quality to enable all UK patients to be involved effectively in the management of their illness and treatment choices.
The strength of this study design is the elicitation of findings to offer a nationwide snapshot of patient information provided by UK renal services. From this overview, it is clear that services view patient information provision as a high priority as it takes time, personnel, money and effort to develop and integrate these interventions into routine practice. The findings also indicate that each renal service manages its own set of patient information resources. In addition, the results suggest that few services have referred to established guidelines on how to develop effective written information. The main limitation of this design is that questions pertaining to the effectiveness of these resources to meet patient's needs cannot be assessed. For example, it is unclear if group workshops, leaflets, videos and one-to-one interventions are all equally effective in informing patients about their ESRF, or whether one medium is more effective than another in facilitating participation in decision-making about treatment choices or for helping different patients manage their ESRF. Further, a cursory search of the applied renal literature suggests there is little evidence to address these questions and therefore, guide the choice of resource medium to meet the intervention objective [17].
The questionnaire response rate (67%) is sufficient to have confidence that these data reflect the range of information interventions available to renal patients across the UK. Although only a third of the UK's main renal units provided leaflets about dialysis, the analysis also assessed the quality and content of leaflets produced by the three leading renal charities and pharmaceutical companies, i.e. information accessible to a large patient sample. There was variation in the provision of patient information interventions by renal services across the UK in terms of content, mode of delivery and quantity. In addition, the quality of the written information provided across the UK was poor. There is a need for research to identify what types of patient information interventions are effective in meeting policy objectives of patient decision-making and illness management. These findings also suggest that having a centralized system to guide renal services in the design and development of information resources to help meet the differing goals of education, choice facilitation and preparation for self-management would be a cost-effective way to enhance standards of care.
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Supplementary material |
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For Supplementary material, please refer to NDT Online.
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Acknowledgements |
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This work was carried out as part of the Economic and Social Research Council (ESRC) CASE scheme, Baxter's Pharmaceuticals is the joint sponsor.
Conflict of interest statement. The first author (AW) is in receipt of an unrestricted research scholarship funded jointly by the ESRC and Baxter's Pharmaceuticals.
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References |
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Accepted in revised form: 1. 2.07
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