Developing a decision support intervention regarding choice of dialysis modality.
Abstract: Predialysis nurses have an important role in supporting patients who must make decisions when renal replacement therapy is needed. However, no effective interventions have been established for nurses who provide this decision support. The Ottawa Decision Support Framework provides a structure to develop such interventions, which include a patient decision aid and decision coaching.

Goal: To propose a method for developing and implementing a decision support intervention.

Method and results: Guided by this model, a mixed method design is proposed to develop and evaluate the intervention. The intervention includes a decision aid intended for patients and their families and training in decision coaching intended for nurses. Its development requires knowledge synthesis and a decisional needs assessment with key informants. The development of decision coaching competencies for nurses will include an interactive skill building workshop. A constructivist evaluation approach will be used to evaluate the intervention.

Conclusion: This study proposes an innovative approach to develop interventions and should contribute to improving the quality of decision-making regarding dialysis modality and to developing nurses' skills in providing decision support.

Key words: predialysis, patient and family participation, decision support intervention
Article Type: Report
Subject: Decision support systems (Methods)
Decision support systems (Research)
Decision support systems (Usage)
Dialysis
Authors: Loiselle, Marie-Chantal
O'Connor, Annette M.
Michaud, Cecile
Pub Date: 07/01/2011
Publication: Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2011 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136
Issue: Date: July-Sept, 2011 Source Volume: 21 Source Issue: 3
Topic: Event Code: 310 Science & research Computer Subject: Decision support software
Accession Number: 267334034
Full Text: Introduction

Predialysis nurses have an important role in supporting patients with chronic kidney disease (CKD) stages 4 and 5 not on dialysis who face decisions about renal replacement therapy (RRT). Since the option of a kidney transplant is a limited option for many patients with CKD, choosing between hemodialysis and peritoneal dialysis is the more common, difficult decision (Harwood, Locking-Cusolito, Spittal, et al., 2005). In the absence of scientific evidence demonstrating the superiority of one option over the other, the decision about RRT lies in the preferences or values of the person with CKD stages 4 and 5 who is not on dialysis. This decision is often made following participation in an educational program in the predialysis clinic, coordinated by a nurse. In spite of this preparation, people experience decisional conflict, or personal uncertainty about the best course of action. In other care situations, decision support interventions have been effective in reducing decisional conflict and improving informed values-based decision-making. The Ottawa Decision Support Framework provides a structure to develop such interventions, which includes decision aids and decision coaching (O'Connor, Jacobsen, & Stacey 2002; O'Connor & Jacobsen, 2007). These interventions aim to improve the quality of decision-making. However, we were unable to find interventions developed for people with CKD stage 4 and 5 not on dialysis and their families. Our goal is to propose a method to develop and implement a decision support intervention for this patient population.

Literature review

For patients with CKD stages 4 and 5 not on dialysis who elect to undergo some form of dialytic therapy, the options of hemodialysis or peritoneal dialysis must be considered. There are different advantages and disadvantages between options that have important implications for the afflicted person's personal, family and social life, as well as for the person's clinical and therapeutic patient management (Farrington & Warwick, 2009; Whittaker & Albee, 1996). This difficult decision often causes a feeling of uncertainty (Lin, Lee, & Hicks, 2005), which corresponds to the construct of decisional conflict. According to the North American Nursing Diagnosis Association (NANDA), decisional conflict is defined as personal uncertainty regarding the best course of action when competing options involve risk, loss, regret or challenge to personal values (NANDA, 1992). Although uncertainty stems from the inherent nature of the tradeoffs between options, modifiable factors can exacerbate uncertainty including lack of knowledge, unrealistic expectations, unclear values, and feeling unsupported or pressured by others (O'Connor & Jacobsen, 2007).

Furthermore, Canadian and American guidelines have been issued to ensure the monitoring and adequate preparation for dialysis of the patient with CKD (Farrington & Warwick, 2009). They indicate that clinical and educational preparations must start early in order to initiate dialysis under the best conditions and to avoid emergency procedures, which are associated with a greater mortality in the first months of dialysis, as well as more frequent and longer hospitalizations (Sprangers, Evenepoel, & Vanrenterghem, 2006). Education programs coordinated by nurses have been developed to inform decision-making by patients and their families and to enhance care planning within multidisciplinary teams. The presence of the family or significant other is desirable given their influence on the decision-making process (Lee, Gudex, Povlen, Bonnevie, & Nielsen, 2008; Whittaker & Albee, 1996).

The effectiveness of these educational programs (Klang Bjorvell & Clyne 1999; Manns, Taub, Vanderstraeten, Jones, Mills, Visser, & McLaughlin, 2005) is disputed in the scientific literature, because recent studies demonstrate that patients lack knowledge (Finkelstein et al., 2008; Landreneau & Ward-Smith, 2007; Mehrotra, Marsh, Vonesh, Peters, & Nissenson, 2005), feel pressure from professionals (Michaud & Loiselle, 2003), have misconceptions of the preferred role in the decision- making process (Orsino, Cameron, Seidl, Mendelssohn, & Stewart, 2003), feel a sense of inadequacy in making an informed decision (Tweed & Ceaser, 2005) and manifest persistent decisional conflict (Michaud & Loiselle, 2003; Tweed & Ceaser, 2005). The decisional conflict that CKD stages 4 and 5 not on dialysis patients experience with the values-sensitive RRT decision point is a concept that is not being considered in predialysis educational programs.

Values-sensitive decisions require a shared decision-making (SDM) perspective, which is particularly important for CKD patients stages 4 and 5 not on dialysis (Pfettscher, 1997). SDM is a process whereby patients and their health care professionals consider health care options and reach agreement on the option that best fits with patients' clinical needs, priorities, and preferences (Stacey, Murray, Legare, Dunn, Menard, & O'Connor, 2008). The Ottawa Decision Support Framework provides a process that facilitates SDM. This framework situates the decisional conflict as a central element of the decision- making process. It has three key elements: 1) assessing decisional needs; 2) addressing identified decisional needs using decision support intervention with interventions such as patient decision aids (PtDAs) and coaching; and 3) evaluating the decision quality and progress in decision-making. These operations apply to all participants, including the patient and his family and their health care professionals. The Ottawa Decision Support Framework asserts that participants' decisional needs will affect decision quality, which will, in turn, have an impact on implementation behaviour, health-related quality of life, regret, and appropriate use of services. Decision support interventions in the form of a PtDA and decision coaching can improve decision quality by addressing unresolved decisional needs.

Decisional needs are assessed by considering the following elements: perception of the decision (knowledge, expectations, values, decisional conflict and type of decision), perception of others (pressure from others and social support), and personal and external resources needed to make the decision (experience, self-efficacy, and access to information and health care).

A high-quality decision is defined as being informed and consistent with personal values. Improving the quality of the decision can have a beneficial effect on other outcomes such as behavioural implementation of the choice, health-related quality of life, regret, and appropriate use of costs and services (Greenfield, Kaplan, Ware, Yano, & Frank, 1988).

The Ottawa Decision Support Framework frames the development of decision support interventions that aim to address decisional needs (O'Connor, Jacobsen, & Stacey, 2002). Assuming that better decisions are based on better knowledge, realistic expectations, and personal values, the Ottawa PtDAs present information about the options, outcomes, and associated probabilities of the decision, and offer explicit values clarification. They are designed to complement--rather than replace--counselling from health care professionals. Many PtDAs using the Ottawa Decision Support Framework have been developed within an interdisciplinary context and subsequently tested with proven effectiveness in various clinical contexts (O'Connor et al., 2009; O'Connor et al., 2002).

Decision coaching is provided by a skilled health professional and is supportive, but non-directive toward the health care decision (Stacey, Murray et al., 2008). It is an adjunct to the decision support that is offered within the framework of the clinical consultation between the patient and the physician. It aims at helping the patient and the family to develop the self-efficacy and skills necessary to prepare for the medical consultation, for the deliberation leading to the decision, and for the implementation of the latter. This intervention, when conducted by a nurse, shows some promise in improving satisfaction and appropriate use of services, as well as reducing costs (Kennedy et al., 2002).

The design of the coaching intervention uses the decision coaching model developed by Stacey, Murray et al. (2008). The model is based on the Ottawa Decision Support Framework and positions the nursing coaching role within the framework of SDM between the patient and the physician. Since providing decision coaching is a relatively new role for the nurse, it requires knowledge and skill building, which can be provided with Murray's skill-building workshop (as described in the method). This workshop has been shown to be effective in developing coaching skills (Murray, 2009).

The studies conducted to develop and evaluate the decision support intervention that used the Ottawa Decision Support Framework are based on experimental design. However, Campbell, Fitzpatrick, and Haines (2000) recommend a phased approach to the development and evaluation to help researchers define clearly where they are in the research process. The use of decision support in the context of CKD stages 4 and 5 not on dialysis is complex. The disease is chronic and decision-making incremental. A team is involved and usual care interventions roll out over time. Dialysis not only changes the patient's life, but also that of the family. The evaluation of such complex interventions in an equally complex clinical situation requires the use of both qualitative and quantitative evidence. We, therefore, propose an innovative approach to developing decision-support interventions in CKD stages 4 and 5 intended to facilitate predialysis care that is evidence-based, feasible, and improves decision quality regarding RRT choice. The design of the PtDA would benefit from a multi-method approach. The development of decisioncoaching abilities will be based on the coaching model using an approach centred on self-discovery and personal development (Rush, Shelden, & Hanft, 2003). Finally, the evaluation of the support intervention according to a constructivist evaluation approach would provide a certain value to the study of decision support. Let us examine in more detail the development and implementation stages of the decision support intervention.

Method

Guided by the Ottawa Decision Support Framework, the development of the decision support intervention has three phases: 1) design of the support intervention, 2) pilot implementation of the intervention, and 3) evaluation of the support intervention by the persons with CKD stages 4 and 5 not on dialysis and their families, as well as by the nurse who will have implemented the intervention.

Development of the support intervention

The aim of the support intervention is to: a) provide the patients with CKD stages 4 and 5 not on dialysis who are considering dialysis options with a PtDA that is based on scientific evidence and that responds to their decisional need; and b) to help nurses to develop decision coaching skills in order to support patients more effectively.

Design of the patient decision aid. The content of the PtDA will be structured using the general format according to the Ottawa Decision Support Framework and will meet the international standards for PtDAs known as International Patient Decision Aids Standards (IPDAS) (Elwyn & O'Connor, 2009). Its development requires several steps (O'Connor & Jacobsen, 2003). The information content and format for the decision aid will be developed through an iterative process and it includes at first a systematic overview of factors influencing the choice of RRT for the patient with CKD stages 4 and 5 not on dialysis, a needs assessment using key informants to elicit patients' and professionals' perceptions of the decisional needs when choosing RRT, and an evidence review to summarize the key benefits, harms, and side effects of each option to be presented in the PtDA. These activities will be realized by the researcher. The second step will be to adapt the Ottawa PtDA template according to the results found from the research activities described below. The third step is to create a steering committee composed of one or two nephrologists, nurses and expert dialysis patients with their relatives. Together with the researcher and an expert researcher in decision sciences, they will collaborate to produce a final version of the PtDA.

Conception of a decision-coaching skill building workshop. Murray's decision-coaching, skill-building workshop (2009), an interactive educational training kit intended for nurses, will be adapted to the RRT decision-making context. Based on the Ottawa Decision Support Framework, the training aims to improve nurses' self-efficacy and skills as follows: assessing patients' decisional needs, providing support to address decisional needs, monitoring progress in decision-making and screening for factors influencing implementation. The training evolves in a three-step approach. The first step includes theoretical training on the Ottawa Decision Support Framework, the PtDA and the decision-coaching skills described in the decision- coaching model of Stacey, Murray et al. (2008). The second step focuses on developing communication skills in decision coaching. Activities will comprise interactive education strategies such as the demonstration and evaluation of decisionsupport interventions from pre-recorded videos with standardized patients, role play, and evaluation of interactions. The third step is the development of decision-coaching skills focused on implementing the decision. During this workshop, nurses will practise with real patients. Self- and peer appraisal during this step will be supported by the use of a decision-support analysis tool (Stacey, Taljaard, Drake, & O'Connor, 2008).

In order to translate knowledge beyond the original workshop, a clinical nurse specialist will be trained to continue to support nurses in learning coaching skills and to facilitate the integration of that practice in daily operations. Finally, the coaching model of Rush et al. (2003) will be used to support the development of nurses' skills.

Pilot implementation of the support intervention

The pilot implementation phase of the intervention will take place at the predialysis clinic where the study is to be realized. The nurse will integrate the decision-support intervention into the activities of the current care pathway and educational program in predialysis. The activities are as follows and are particular to this predialysis setting: first of all, the nephrologist will determine the patients' clinical eligibility for the dialysis options and refers the patient and significant other to the predialysis program. An appointment with the nephrologist is also scheduled in two to three months, where the patient communicates his or her choice and preparatives to plan the initiation of the dialysis are primed. Upon receipt of the referral, the nurse plans the preparation activities for modality selection. The main activities are the following: the initial visit (data collection and orientation towards group or individual education sessions); education visits the month following the initial visit, and monitoring and symptom management (together with the medical visits) until the initiation of dialysis. During these visits, the patient is invited to share his or her modality choice in order to facilitate planning of access for the dialysis type selected.

Within the framework of this study, we foresee that nurses will use the PtDA and integrate the decision-coaching interventions at various intervals within the context of the activities of the education program in predialysis (see Table 1).

Evaluation of the support intervention

The aim of the evaluation phase is twofold. First, it aims to understand the experiences of CKD patients, their significant other, and the predialysis nurse with this intervention. Second, it aims at targeting the elements of the intervention that influence decision support. During this phase, we will evaluate more specifically the components of the decision support intervention and their influences on the decision point, the choice of dialysis modality, and the quality of the decision both for the patient and his or her significant other. We will also study the experience of decision coaching in terms of selfdiscovery and personal development for the nurse. Finally, we will evaluate the decision support interventions that nurses can use to facilitate the evaluation, the clarification and deliberation, and the implementation of the decision.

The evaluation of the decision support intervention will be carried out using a qualitative design with a constructivist evaluation approach by Guba and Lincoln (1989). These authors have suggested an evaluation process that facilitates meaningful collaboration with participants. It is characterized by the study of cases constituted of groups of people reporting their experience with the phenomenon.

Case selection

In this study, a case will include a patient and significant other who will both have benefited from the intervention, as well as the nurse who will have conducted the support intervention. Eight cases will be recruited by intentional sampling, taking into account characteristics that influence the choice of a dialysis technique, namely: the age, the sex, and the social network.

Data collection

The method of data collection will use three strategies: semi-structured interviews, questionnaires, and sociodemographic data and field notes. An in-depth interview using open-ended questions to uncover information will be used to allow participants to express opinions and ideas in a profound manner and to provide flexibility (Lincoln & Guba, 1985). An interview guide semi-structured qualitative format will be used and will capture the evolution of the intervention of the decision support. Since this type of study must be conducted in the natural context, this meaning where the decision is made regarding the choice of an RRT, the in-depth interviews for the patients and their significant others will be conducted at their place of residence. The nurse will be interviewed at the predialysis clinic.

Process evaluation

This evaluation approach is a local and teaching/learning process whereby the stakeholders (key informants) and researcher collaboratively create a consensual construction of a phenomenon (in this case the decision support intervention). It is a continuous and recursive process that subsumes data collection and data interpretation into one inseparable and simultaneous whole. The researcher undertakes a discourse interpretation process in order to find the meaning of the experience and then to construct a narrative that has to be confirmed by participants. The exchanges between the researcher and the participant are aimed at reaching a consensus.

Data collection will be carried out by a wave of interviews and follows the steps below. For the patient and his significant other, this represents a qualitative interview at home followed by a telephone interview with validation of their narrative provided before by the researcher. In parallel, the nurse will have a qualitative interview at the prediaylsis clinic followed by a telephone interview with validation of his or her narrative provided before by the researcher. When each case participant has validated the narrative, the researcher gathers them to construct a summary. This summary is then submitted to the participants for validation. This grouping together enables identification of the similarities and the discrepancies and arrives at the design of a model that would be the most significant and applicable for each of the persons involved (Michaud, 2000; Sylvain, 2000). This process recalls the hermeneutic dialectic circle. This summary is then reinvested in the next case and is presented at the end of the first qualitative intervention with the patient and the significant other.

In order to reach a prospective understanding of the decision support intervention, qualitative interviews will be held at different time points. For the patients and their significant others, those moments are the following: after the initial meeting, after the meeting for clarification and deliberation with the nurse, and after consultation with the nephrologist. For the nurse, the interviews will be conducted after the initial meeting with the patient and his significant other, and after the clarification and deliberation meeting.

Data analysis

The qualitative interviews will be typed and analyzed according to a hermeneutic and dialectic process using a constant comparative method (Skrtic, Guba, & Knowlton, 1985). The researcher approaches the data with empathy and is open to the ideas expressed in the text. This is an interactive approach to texts with the researchers, as individuals and as a group engaging in a dialogue with the text, comparing and contrasting through a dialectical interchange. The aim is to discern a consensus construction that is more sophisticated and informed than earlier constructions (Sylvain, 2000; Smythe, Ironside, Sims, Swenson, & Spence, 2008).

According to Skrtic, Guba and Knowlton (1985), the constant comparative method consists of identifying, coding, and categorizing the primary patterns in the data. Categorizing involves organizing coded data units into categories identified through similar characteristics (Lincoln & Guba, 1985). The important task of categorizing is to closely examine and compare for similarities and differences of those codes and bring them together into temporary categories to facilitate their handling. Categories must be meaningful both internally, in relation to the data understood in context, and externally, in relation to the data understood through comparison. A refinement of the category remains an ongoing process throughout the data analysis.

The trustworthiness criterion of Guba and Lincoln (1989) will be adopted to ensure the study's scientific quality. Credibility will be ensured by the participants, which will validate the summary of the experience of decision support and the counterchecking of the final result by the members of the steering committee of the development of the PtDA. Moreover, there will be a close supervision of more experienced researchers throughout the process, including the two supervisors of the thesis with one being an expert researcher in developing and evaluating PtDA. Transferability will be ensured by a detailed description of the context of the study and by having the interviews conducted in the participants' natural setting. Finally, reliability is ensured by the coding of qualitative data with two researchers, a detailed description of the research process, a prolonged experience of the researcher with the patients in this study, and the extent of time spent in the field. We will ensure that the integrity of the results is rooted in the data themselves and in the validation process, always in action. The keeping of field notes by the researcher will also contribute to the reliability of data.

Strength and limitations

One strength of this study is the adoption of the constructivist evaluation approach by Guba and Lincoln (1989), which is focused on knowledge transfer. Using a participative approach, the proximity between researcher and clinician strengthens this research, as it values the feedback of each participant who is considered a co-researcher. Moreover, it will be the first study to provide insights on the decision process at the time of decision about RRT. We expect also to learn more about the utility of the Ottawa Decision Support Framework and the decisioncoaching model, which will contribute to the development of the nurses' role in the area of decision support.

This study has some limitations. The results will be difficult to generalize, as they will be linked to the perspective of patients and professionals from the predialysis clinic and to the particular environment where the study will take place. In addition, the results will capture the phenomenon of intervention to support decision-making only during the first three months. Some difficulties in recruiting sufficient patient participants and their significant others may occur given the context in which they will be recruited (high decisional conflict). This could mitigate the study.

Ethical consideration

This project will be submitted to the ethics committee of the research centre that will host the study.

Conclusion

Patients with severe CKD and their families face complex decisions concerning the initiation of RRT that require comprehensive information and support to allow them to make an informed decision about RRT. More recently, there is North American acceptance that a SDM approach should be adopted in the case of choosing RRT (Renal Physicians Association, 2010). In addition, the Registered Nurses' Association of Ontario (RNAO) has published in 2009 a specific guideline on decision support for adults living with chronic kidney disease by recommending the use of decision support interventions to help patients make decisions about managing their CKD, which include choosing RRT. This study is timely and should contribute to improving the quality of the decision regarding the choice of RRT and promote self-management for the patient. Also, it should help nurses to improve their teaching skills and incorporate into their practice a decision support intervention.

Acknowledgement

This research was supported in part by a doctoral training grant from the Ministere de l'Education, du Loisir et du Sport du Quebec (Ministry of Education, Leisure and Sports of Quebec), the Quebec Interuniversity Nursing Intervention Research Group (GRIISIQ) and its government partner, the Quebec Health Research Fund, the Research funds from University of Sherbrooke, and the GRAPPE research fund of the Charles LeMoyne Hospital.

Conflict of interest

The author declares having no conflict of interest. This study is conducted within the framework of doctoral studies in the clinical sciences program, path in nursing sciences of the University of Sherbrooke. This study is under the supervision of professors Cecile Michaud and Annette O'Connor.

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By Marie-Chantal Loiselle, RN, MSN, PhD student, Annette M. O'Connor, RN, PhD, and Cecile Michaud, RN, PhD

Marie-Chantal Loiselle, RN, MSN, PhD student, Professor, School of Nursing, University of Sherbrooke, Sherbrooke, QC.

Annette M. O'Connor, RN, PhD, Professor Emeritus, School of Nursing, University of Ottawa, Ottawa, ON.

Cecile Michaud, RN, PhD, Adjoint Professor, School of Nursing, University of Sherbrooke, Sherbrooke, QC.

Address correspondence to: Marie-Chantal Loiselle, RN, MSN, PhD student, School of Nursing, Faculty of Medicine and Health Sciences, University of Sherbrooke, 150 place Charles LeMoyne, Longueuil, QC J4K 0A8.

E-mail: marie-chantal.loiselle@usherbrooke.ca

Submitted for publication: March 8, 2011.

Accepted for publication in revised form: July 21, 2011.
Table 1. Activities of the pre-dialysis educational program
and integration of decision-support interventions in these activities

Activities of the education program in pre-dialysis

Initial meeting    Educational       Educational monitoring
                   meeting

Collection Group   Information on  Complete the information
or individual      the options
orientation
                   1 month         2 months

Decision-support interventions

Evaluation         Education/      Clarification/
                   communication   deliberation

Decision           Benefits/risks  Exercises of value
Discomfort         (scientific     Clarification/deliberation
Decisional needs   evidence)       on the decision
                   1 month         2 months

Activities of the education program in pre-dialysis

Initial meeting    Decision      Decision             Surgery
                                 monitoring           access

Collection Group   Nephrologist  Medical and          Fistula or
or individual      Consultation  symptom-management   peritoneal
orientation                      monitoring           catheter

                   3 months      4 to 7 months        8 to 12
                                                      months

Decision-support
interventions

Evaluation         Decision      Implementation       Surgery
                                                      access

Decision           Nephrologist  Obstacles Screening  Fistula or
Discomfort         Consultation  [up arrow] Feeling   peritoneal
Decisional needs                 of self-efficiency   catheter

                   3 months      4 to 7 months        8 to 12
                                                      months
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