The Patient Dignity Inventory: Applications in the Oncology Setting

Abstract

Background:

The Patient Dignity Inventory (PDI) is a novel 25-item psychometric instrument, designed to identify multiple sources of distress (physical, functional, psychosocial, existential, and spiritual) commonly seen in patients who are terminally ill. It was also designed to help guide psychosocial clinicians in their work with patients. While its validity and reliability have been studied within the context of palliative care, its utility in clinical settings has not as yet been examined.

Purpose:

The purpose of this study was to determine how psychosocial oncology professionals would use the PDI with within their practice and what utility it might have across the broad spectrum of cancer.

Methods:

Between October 2008 and January 2009, psychosocial oncology clinicians from across Canada were invited to use the PDI to determine their impressions of this approach in identifying distress and informing their practice.

Results:

Ninety participants used the PDI and submitted a total of 429 feedback questionnaires detailing their experience with individual patients. In 76% of instances, the PDI revealed one or more previously unreported concerns; in 81% of instances, clinicians reported that the PDI facilitated their work. While it was used in a wide range of circumstances, clinicians were more inclined to apply the PDI to patients engaged in active treatment or palliation, rather than those in remission, having recently relapsed, or newly diagnosed. Besides its utility in identifying distress, the PDI enabled clinicians to provide more targeted therapeutic responses to areas of patient concern.

Conclusions:

While this study suggests various clinical applications of the PDI, it also provides an ideal forerunner for research that will directly engage patients living with cancer.

People living with life-threatening or life-limiting cancer grapple with a variety of psychosocial, existential, and spiritual challenges, causing distress and eroding a sense of dignity.^1–5 Twenty to forty percent of patients with cancer experience substantive emotional distress;^6–8 hence, an important role for psychosocial clinicians is recognizing psychological distress and disentangling its quality and nature in order to provide better patient care.

The ability to comprehend and respond to cancer-related distress calls for a detailed appreciation of the patient's experience.^5,9–12 Screening instruments of various kinds can facilitate this process. Some instruments take a general approach, asking patients to rate their global sense of distress,^13,14 while others are much more focused, assessing specific aspects of distress, such as depression (Beck Depression Inventory)¹⁵ or anxiety (Hospital Anxiety and Depression Scale¹⁶ and Beck Anxiety Inventory).¹⁷

Multidimensional screening tools are designed to focus on various sources of distress encountered by cancer patients.^18,19 The Patient Dignity Inventory (PDI) is one such tool,^2,20–23 uniquely based on an empirical model of dignity in the terminally ill. The dignity model identifies a multitude of issues affiliated with life-threatening and life-limiting illness,^{20–22,24–27} with themes and subthemes that tap into physical, psychosocial, existential, and spiritual domains of concern.²³ Like the model itself, the PDI is quite granular and thus able to elicit information regarding various facets of patient experience. Thus far, its validity has been studied exclusively within research settings and almost entirely in patients with end-stage cancer.

The goal of this study was to place the PDI in the hands of psychosocial oncology professionals, to determine its role within actual clinical practice. Ecological validity studies of this kind are an important facet of implementation research, which requires that innovations or tools—such as the PDI—be examined within “real world circumstances,” in order to identify factors that promote or impede adoption and uptake into practice.²⁸ The aims of this study were: (1) to examine how psychosocial oncology clinicians applied the PDI in instances they deemed clinically appropriate; (2) to determine if clinicians were able to utilize the PDI to identify various sources of distress; and (3) to explore how the PDI was able to guide or shape clinicians' therapeutic work with patients living with cancer.

Method

This study employed a naturalistic design, engaging psychosocial oncology clinicians from various disciplines and clinical settings including hospital inpatient and outpatient oncology clinics from across Canada. Our intent was to include various professionals reflecting the natural breadth and variety of therapeutic disciplines providing psychosocial care to those living with cancer. The study protocol received approval from the ethics board at the University of Manitoba and 14 additional committees covering every site with which participants were affiliated.

Recruitment and sample

The group of interest for this study was psychosocial oncology clinicians. Because of the multidisciplinary nature of oncology departments, clinicians from a variety of disciplines providing psychosocial care to patient/clients living with cancer were eligible to take part in the project. Directors or leaders of 14 major cancer centers hosting departments of psychosocial oncology were contacted, leading to 24 additional contacts in 16 cities. Directors and leaders informed their staff, resulting in 119 psychosocial oncology clinicians being entered into the study, representing 24 health centers in 21 cities.

Study design and procedures

This study began with a series of day-long workshops held in 10 cities across Canada. The workshops provided an overview of the empirical underpinnings of the PDI, a discussion about dignity and distress, delineation of the study requirements, role-playing administering the PDI among clinicians, followed by group discussion and final questions. Participants provided demographic information on gender, education, profession, years of professional experience, and years of oncology experience. Once participants had completed the workshop they were advised to begin using the PDI within their practice.

Participants were asked to use the PDI with their clients at least once per month over a four-month timeframe in instances they considered therapeutically appropriate. They were instructed to present the PDI to their clients in a fashion that was comfortable and consistent with their own counseling style and clinical routine. After each use of the PDI, clinicians were asked to complete a questionnaire indicating whether the PDI disclosed new issues, enhanced their therapeutic work, or made therapy better or worse; and how acceptable and useful they thought the PDI was to their client, and how useful they found it.

At the end of four months, clinicians participated in a 30-minute, semistructured telephone interview. The interview contained survey items as well as semistructured questions designed to elicit the clinicians' experiences, including any limitations and challenges they encountered. Clinicians also completed a questionnaire in which they were asked to rate the clinical value of each of the items contained within the PDI.

Data analysis

Demographic data, quantitative data from the post-PDI feedback questionnaires, and participant ratings of the clinical value of each PDI item were summarized. Survey questions from the telephone interviews were examined using frequency counts (SPSS 16.0, SPSS Inc., Chicago, IL). Qualitative data from the telephone interviews were analyzed using manifest content analysis and constant comparative techniques.²⁹ Three research staff (SM, NM, AR) derived summary themes based on clinician comments on their experiences using the PDI.

Results

Sample characteristics

Of the 119 participants who took part in the introductory workshops, eight were program directors who supported the participants but who did not submit data. Of the remaining 111 participants, 90 (81%) used the PDI with clients over the four-month period of data collection and submitted feedback data after each administration. Of the 90, 84 (93%) participated in a telephone interview at the end of the four months, and 67 clinicians provided a ranking of the value of each PDI item. Participants represented a range of professions. The demographic details of the sample who used the PDI can be seen in Table 1. These were experienced clinicians, averaging 17 years in their respective professions and 8 years in psychosocial oncology.

Table 1.

Demographic and Professional Description of Participants

		N	Percent
Gender	Female	68	76
	Male	22	24
Highest education	Bachelor's	14	16
	Master's	55	61
	MD/PhD	21	23
Marital status¹	Married	69	77
	Divorced/separated	9	10
	Never married	9	10
Profession	Social work	49	54
	Medicine	10	11
	Psychology	10	11
	Other health care	10	11
	Spiritual/pastoral care	7	8
	Nursing	4	5

	Mean	SD
Years in profession	17.1	9.8
Years in oncology	8.0	7.5

N=90 enrolled in study and submitted data on use of the PDI.

Marital status N=87 (3 clinicians (3%) did not report marital status). Other health care professions include occupational therapists (2) and clinical counselors (8).

Given that participants worked across a variety of cancer-care settings, the PDI was completed in various locations, including outpatient departments (44%), inpatient hospital wards (27%), waiting rooms (14%), at home (5%), or in nonspecified settings (10%). Clinicians used the PDI with clients in various stages of disease, including active treatment (36%), palliative care (25%), in remission (18%), relapse (15%), and new diagnosis (12%). (Clinicians could indicate more than one category; thus, percentages do not add to 100).

Post-PDI clinician questionnaire results

Over the course of the study, clinicians submitted 429 PDI feedback reports (mean 4.8 per participant; mode 3). For any given client, the vast majority of clinicians (87%) used the PDI once; 9%, two to three times, and 4% more than three times. Most clinicians (65%) had the client fill out the instrument (Table 2) in its entirety before beginning to respond to it; the rest preferred to respond to issues deemed problematic (scoring≥3) at the moment the client scored them as such. When clients were well enough to fill it out on their own and did so consecutively, the PDI took as little as a few minutes to complete. When the clinician administered only portions of the instrument at any given time, responding to problematic issues as they were reported, it took as much time as the client and clinician wished to devote to it.

Table 2.

Patient Dignity Inventory

	For each item please indicate how much of a problem or concern these have been for you within the last few days	Not a problem	A slight problem	A problem	A major problem	An overwhelming problem
1.	Not being able to carry out tasks associated with daily living (e.g., washing myself, getting dressed).	1	2	3	4	5
2.	Not being able to attend to my bodily functions independently (eg., needing assistance with toileting-related activities).	1	2	3	4	5
3.	Experiencing physically distressing symptoms (such as pain, shortness of breath, nausea).	1	2	3	4	5
4.	Feeling that how I look to others has changed significantly.	1	2	3	4	5
5.	Feeling depressed.	1	2	3	4	5
6.	Feeling anxious.	1	2	3	4	5
7.	Feeling uncertain about illness and treatment.	1	2	3	4	5
8.	Worrying about my future.	1	2	3	4	5
9.	Not being able to think clearly.	1	2	3	4	5
10.	Not being able to continue with my usual routines.	1	2	3	4	5
11.	Feeling like I am no longer who I was.	1	2	3	4	5
12.	Not feeling worthwhile or valued.	1	2	3	4	5
13.	Not being able to carry out important roles (e.g., spouse, parent).	1	2	3	4	5
14.	Feeling that life no longer has meaning or purpose.	1	2	3	4	5
15.	Feeling that I am not making a meaningful (and) OR lasting contribution in my life.	1	2	3	4	5
16.	Feeling that I have ‘unfinished business’ (e.g., things that I have yet to say or do, or that feel incomplete).	1	2	3	4	5
17.	Concern that my spiritual life is not meaningful.	1	2	3	4	5
18.	Feeling that I am a burden to others.	1	2	3	4	5
19.	Feeling that I don't have control over my life.	1	2	3	4	5
20.	Feeling that my illness and care needs have reduced my privacy.	1	2	3	4	5
21.	Not feeling supported by my community of friends and family.	1	2	3	4	5
22.	Not feeling supported by my health care providers.	1	2	3	4	5
23.	Feeling like I am no longer able to mentally ‘fight’ the challenges of my illness.	1	2	3	4	5
24.	Not being able to accept the way things are.	1	2	3	4	5
25.	Not being treated with respect or understanding by others.	1	2	3	4	5

Clinicians reported that in 78% of instances, the PDI disclosed issues that were previously unknown (one or two new issues [44%], several issues [23%], many issues [11%]). Eighty-four percent of the time clinicians said the PDI enabled their work (a little [30%], somewhat [35%], and a lot, [19%]), with the remainder either being uncertain (11%) or reporting that it did not enable therapy (5%). In 65% of instances, using the PDI was reported to make the therapy session better (a little better [38%], quite a bit better [23%], very much better [4%]). In 32% of instances, clinicians reported that it had a neutral effect on therapy; 3% of the time they reported that it had a negative effect on the therapy (e.g., experienced as disconnected from clients' areas of concern). According to clinicians, the vast majority of clients (94%) found the PDI acceptable, i.e., easy to use and well tolerated; in 5.5% of instances, clinicians were uncertain, and 0.5% felt it was not well tolerated.

Clinician evaluation of individual PDI items

At the end of the study phase, 67 clinicians rated their overall perceived value of each PDI item, using a five-point rating scale. Table 3 reflects the percentage of clinicians who ranked each item as very valuable. The item feeling that my life no longer has meaning or purpose, was top ranked by clinicians (86.6% considered it very valuable). The lowest ranked item was not being able to carry out tasks associated with daily living (41.8%). Given the focus of their clinical work, psychosocial oncology professionals ranked psychological and existential issues most highly.

Table 3.

Ranking of Importance of PDI Items to Clinicians

Areas of distress	Ranking by clinicians	Percentage of clinicians rating PDI item as very valuable
Feeling that life no longer has meaning	1	86.6
Worried about the future	2	82.1
Feeling anxious	3	79.1
Feeling no control over life	4	78.8
Feeling depressed	5	76.1
Not feeling worthwhile/ valued	6	76.1
Uncertainty about illness/ treatment	7	74.2
No longer feeling who I was	8	74.2
Not able to carry out usual roles	9	73.1
Feeling of not making a contribution	10	70.1
Feeling a burden to others	11	68.7
Not being treated with respect	12	68.2
Feeling of unfinished business	13	67.2
Not supported by family members	14	67.2
Not supported by health care providers	15	65.7
Physically distressing symptoms	16	62.7
Not able to accept the way things are	17	59.7
My looks have changed	18	56.7
Not able to think clearly	19	53.7
Spiritual life not meaningful	20	52.2
Not able to mentally fight challenges	21	50.7
Not able to continue usual routines	22	49.3
Not able to attend to body functions	23	47.8
Feeling a reduced sense of privacy	24	46.3
Not able to do tasks of daily living	25	41.8

N=67 clinicians. Ratings are based on an end of Phase 1 questionnaire asking clinicians to evaluate each of the items on the PDI. Response categories were: 1. Not valuable at all; 2. Not very valuable; 3. Unsure; 4. Fairly valuable; 5. Very valuable.

Post-study clinician interview data

Eighty-four clinicians participated in the post-study telephone interview, which contained both survey items and open-ended, semistructured questions. These questions explored with participants: (1) the likelihood of incorporating the PDI into their practice, (2) how clinically valuable they found the tool to be, (3) the extent to which the PDI facilitated client disclosure versus creating distance with the clinician, and (4) how they used the PDI in practice. Participants were also invited to describe what factors or situations precluded them from using the PDI with clients.

Sixty-nine per cent of clinicians (n=58) said they would consider incorporating the PDI into their practices on occasion, 26% (n=22) said they would consider incorporating it often, and 5% (n=4) said they would not, or likely would not, use the PDI. Thirty-six percent (n=30) indicated that the PDI was very valuable; 49% (n=41) found it somewhat valuable; and 15% (n=12) rated it not at all valuable, not very valuable, or not sure. Seventy-four percent of clinicians (n=62) were positive about the extent to which the PDI facilitated client disclosure; 21% (n=18) indicated that the use of the PDI created distance between them and their clients, and 5% (n=4) were unsure.

When asked about the ways they used the PDI in practice, clinicians could indicate that they had used it in more than one way (as such, the percentage categories are not mutually exclusive). Forty-one per cent of clinicians indicated that they used the PDI to help explore new issues with the client, i.e., it provided an entry point into discussing existential issues and a means by which less articulate or more reticent clients could reveal their distress. In some instances, clinicians used the PDI as a screening tool (35%) or to confirm their prior understanding of the client (34%). Less frequently, it was used to track or monitor client progress (14%). For clients who were vague or unable to pinpoint the nature of their distress, the PDI was used to help focus the conversation and articulate their concerns (13%) to prevent them from becoming too overwhelmed. At other times, the PDI was used to open up the conversation when clients were perseverating or too narrow in focus (10%). As part of the interview, clinicians were invited to share their experiences in using the PDI. Based on these open-ended questions, two major themes were identified: (1) benefits of using the PDI and (2) challenges of using the PDI in practice (see Table 4).

Table 4.

Summary of Benefits and Challenges of Using the PDI

Benefits of using the PDI in clinical practice
• A screening tool
• To discover new issues
• Reinforce client-related strengths
• Track client concerns
• Give voice to issues
• Hone in on issues
• Facilitate communication
• Promote insight
• Facilitate communication with clients and families
• Identify salient issues in group work

Challenges of using the PDI in clinical practice
• Clinicians refrained from using the PDI when:
∘ Clients were in acute crisis
∘ Clients or clinicians had a clearly defined agenda
∘ Clinicians had no prior knowledge of the client
• Might intrude on clinical space or disrupt therapy
• ‘Pen and paper’ tools not part of disciplinary training or clinical perspective
• Length and the time it takes to fill out
• Administered only when time permits a thoughtful response
• May open up too many issues
• Not knowing how to respond to multiple problems

The data summarized here are based on an analysis of the qualitative, open-ended questions asked of 84 clinicians who participated in the post-PDI interview.

Benefits of using the PDI in clinical practice

The PDI was beneficial to clinicians as a screening tool, informing their preliminary client assessments and ensuring they had been thorough in identifying all of the issues that were causing distress. One participant noted:

As a screening tool, it is very helpful to look at where the person is at. It can get overwhelming; you can feel yourself overwhelmed. I found it good to make sure I am not missing anything. It helps you hone in on what are the significant issues.

Participants identified ways they and their clients benefited when the PDI was administered. There were many occasions when the PDI helped discover new issues.

We went through [the PDI]…step by step.…it touched all these points that were stressing her. We went through all these things, and we found some new issues.

One time it surprised me, because the answers were so different to what I thought they were going to be. As a result I use it more frequently to make sure that there isn't something there I would be surprised about rather than making assumptions.

Conversely, when the PDI did not indicate client distress, clinicians were able to use that information to reinforce client-related strengths and highlight areas of resilience. This participant working in an outpatient cancer clinic explained:

One of the things that I found helpful was looking with the patient at the things they scored not a problem and being able to use that as a reinforcement for them.

Another benefit identified by clinicians was that the tool afforded them the opportunity to track client concerns over time as they moved through their cancer trajectory. One clinician explained:

One woman was going for surgery and not coping well. I used the PDI so I could follow her throughout her treatment.…they get a routine, and we can work through all their concerns.

The PDI was also endorsed as a way of helping to give voice to issues that clients were not able to name. This participant noted:

The PDI provides patients a language and identifies pertinent items they struggle with and are struggling to put words to. It allows the patient to begin to deal with such issues they were not able to identify before.

Clinicians also remarked that the tool helped clients who were very distracted to hone in on issues in order to enable effective therapeutic counseling. As one clinician explained:

I was working with one patient. He was experiencing high anxiety, and he was having a lot of difficulty. As he came to each session, he'd be all over the place, depending on what had happened during the previous week. It was hard to get his priorities, and they changed from week to week. He said he felt he was spinning his wheels. So I used the PDI, and it was helpful. He had family and health care issues, and he was a visual learner. He liked to see something in front of him. It helped him order his priorities. He really needed to concentrate on some areas over others.

Another benefit of the PDI identified by clinicians was its ability to facilitate communication in clients who had functional deficits caused by their disease. One clinician explained how using the PDI in such cases allowed the client to communicate her concerns when other means of communication were not available to her.

One lady had cancer and Huntington's. The feeling [of the team] was that she was cognitively impaired. However after the PDI we found out that she was not. She was actually insightful and reflective.

Clinicians also believed that the PDI was able to promote client insight into some of their issues as a result of reflecting upon the PDI item(s).

It's like a light bulb moment for them. ‘I haven't really thought about that. Yes, actually that is a problem, and I have to work on that.’

Clinicians identified that they used the PDI to facilitate communication with clients and families about illness-related issues. Clinicians described having their clients and the clients' partners or family members fill out a PDI concurrently, and then compare actual distress with the way others perceived it. The following exemplar illustrates this point:

It has been helpful with families and partners as a point of discussion….It enables discussion and revelations for both parties and opens up discussion.

Participants also found that the PDI was very helpful to identify salient issues in group work with their clients. They described using it as a means of taking the group temperature and putting group members in tune with various psychosocial issues that the group might choose to discuss. One clinician stated:

It gives me a sense of what kind of things I should focus on in the groups. It has been very useful for me in that setting.

Challenges of using the PDI in clinical practice

The post-study interview included qualitative data regarding the challenges clinicians experienced when they used the PDI. There were instances when clinicians refrained from using the PDI. For example, the PDI was typically not used if the client was deemed to be in an acute crisis. In such instances clinicians felt that imposing a questionnaire was neither empathetic nor an effective means of responding to client distress. This participant explained:

I haven't used it with…patients who are highly distressed and in crisis —they are ‘off and running before we're even going,’ so it would feel almost disrespectful to stop that process to bring [the PDI] out.

Clinicians also identified that they would not use the PDI if the client presented with a clearly defined agenda, for example, a request for assistance with practical issues (e.g., financial assistance, organizing home care).

Some albeit not all clinicians tended to avoid using the PDI in instances where they had no prior knowledge of the client, fearing that use of the tool might interfere with the forming of rapport and impede therapeutic connectedness.

Not for first consultation. For me, the first consultation is very important. I really want the patient to be heard, to fully attend and be very positive for them. The way for me to do that is to give them their time, let them do a lot of talking. I think in using the PDI there is a subtle message – ‘I think this is a better way to find out what's wrong with you.’ Using a checklist could turn them off, so I don't use it with new patients, but I am comfortable using it with people I know.

While the majority of participants in this study used the PDI in practice with clients, 19% (n=21) did not. Six of these clinicians routinely worked with clients experiencing acute physical symptoms in crisis situations and reported that they did not find clinically appropriate opportunities to administer the PDI. Other clinicians felt that using the PDI might intrude on their clinical space and possibly disrupt therapy. As stated by one physician working in an outpatient cancer clinic:

I think some patients see it as disconnected from our therapy work. I don't think they see how it is relevant or how it is implemented. There are just too many screens being used.

Another reason advanced for not using the instrument was the feeling that pen and paper tools were not part of the clinician's disciplinary training or clinical perspective. One participant explained:

For me sitting with a clipboard in my hand, and to sort through this in a way that doesn't seem like an ask-and-answer interview, I just don't know how I would do that. With practice, you would learn, but it wouldn't be something I would immediately reach for each time.

Additional reasons for not using the PDI included its length and the time it takes to fill out. Most participants felt that the PDI should be administered only when time permitted a thoughtful therapeutic response to issues that might be raised. Participants also tended to avoid using the PDI if they feared it might open up too many issues, thereby overwhelming the client.

Some clinicians indicated they did not use the PDI because of concern that they themselves might feel overwhelmed in not knowing how to respond to multiple problems identified by the tool, particularly those within the domain of existential distress. One clinician succinctly stated what others had alluded to:

Am I opening a can of worms? Will I be able to deal with these issues appropriately?

Discussion

The PDI was originally developed as a means of identifying distress in patients nearing end of life. While its psychometric characteristics have been studied in palliative patients,²³ its ecological validity as a clinical tool has not been examined. The aim of this study was to explore the ecological validity of the PDI by inviting a range of psychooncology professionals to use it within their practice. In the current study, clinicians were given the opportunity to use the PDI when they deemed clinically appropriate and could apply it across the broad spectrum of cancer. The majority of participants utilized the PDI with clients receiving active treatment or palliative care. Fewer used the PDI with patients who had just relapsed, were in remission, or were newly diagnosed.

Most study participants found that the PDI facilitated the disclosure of client distress. In almost 80% of instances when the PDI was used, it uncovered one or more areas of distress previously unknown to the clinician. Clinicians likened it to a snapshot, allowing them to promptly and efficiently identify those areas currently deemed to be problematic. This finding suggests that the PDI may enable more efficient and targeted psychosocial care amongst clients experiencing distress in the context of cancer. However, participants were cautious, knowing it could be emotionally evocative. Over the course of the study, participants came to appreciate that using the PDI required a thoughtful introduction (e.g., “While some of these questions may be difficult, they could help me understand what you are going through”) and time to discuss the emerging issues and feelings. When handled in this way, the PDI promoted therapeutic work and insights; when mishandled, clinicians worried that clients might feel overly confronted and exposed.

Clinicians generally found the PDI a feasible tool across a variety of clinical settings and client circumstances, in terms of stage and seriousness of their cancer. A distinguishing aspect of the PDI appears to be how the information it elicits is integrated into clinical work. Rather than being a distinct or stand-alone screening exercise, the information emerging from the PDI often precipitated conversations, promoted insight, or generally informed the clinical work taking place between clinicians and their clients. It was often described as a therapeutic tool, used to enhance the therapeutic alliance. According to the clinicians, it was particularly useful in helping clients who had difficulty expressing their distress, either because they did not have the emotional vocabulary to express their feelings, or because they were reticent to reveal or initiate these discussions with a clinician. For clients unable to vocalize their angst altogether, such as those with head and neck cancers, the PDI provided an outlet for communication.

The PDI items clinicians rated as most valuable — worrying about the future, feeling anxious, feeling lack of control over life, feeling that life no longer has meaning, feeling depressed, and not feeling worthwhile/valued — reflect deep psychological and existential issues. These issues profoundly shape client experience and are the types of problems psychosocial oncology clinicians tend to see most in their practice. While these issues are not easily resolved, broaching them and providing clients an opportunity to speak about them in and of itself appears to be therapeutically potent.

Not all clinicians were enthusiastic about the PDI. About 20% of study participants were either unable or unwilling to use the PDI, citing its length or indicating it might be clinically disruptive. The uptake of any novel approach to health care takes time and is often shaped by health care provider attitudes and clinical habits.^30–32 For many participants, pen and paper tests are not within the tradition of their disciplinary training. While some saw the PDI as saving time—facilitating the disclosure of client issues—others saw it as displacing valuable clinical work. Concerns about time were sometimes mitigated by clinicians who took to asking clients to read through the PDI and disclose only those items that were problematic. This instruction reduced administration time to as little as one or two minutes.

There are several noteworthy limitations of this study. Given our focus on the ecological validity of the PDI, study participants were comprised entirely of clinicians, not clients. As such, these findings provide an important forerunner for client-based studies examining the validity and reliability of the PDI against other known measures of psychosocial distress. Clinicians were asked to administer—and provide feedback on—a minimum number of PDIs. While this instruction may have constrained the size of the dataset, it ensured that participants would not feel pressure to utilize the PDI in less than what they deemed ideal circumstances. Although individual experience with the PDI was therefore modest, the study design yielded a large enough sample to analyze the collective experience of participants.

Another consequence of focusing on ecological validity was that clinicians utilized the PDI in different ways. Some participants used it for evaluative purposes in therapy sessions. Others used it as a waiting room screening tool, which was then dealt with in a subsequent therapeutic session. As well, some clinicians used it as a self-report measure, while others administered it (i.e., read it aloud) to clients, largely dependent on the client's energy and functional status. The study design did not allow for measuring the effect of these variable approaches. These differences notwithstanding, the PDI opened up conversations with clients about meaningful issues and provided an entry into articulating and understanding sources of client distress. The PDI prompted clinical awareness of these issues in a relatively straightforward fashion.

Because our aim was to assess the PDI in a naturalistic setting, we did not stratify the sample based on discipline. As such, the representation of different professions offering psychosocial care is not balanced in our sample, precluding the ability to analyze the data based on professional affiliation. That said, clinician response to the PDI and feasibility of use did not appear to be based on disciplinary considerations.

Studies are needed to establish the utility of the PDI across various clinical populations. Our research group is currently evaluating PDI-rated distress for people with noncancer life-limiting conditions, including end-stage renal disease, end stage COPD, amyotrophic lateral sclerosis, and the frail elderly. These studies will include other concurrent measures of distress, which will further help establish its validity and reliability beyond the context of end-stage cancer.

Since its publication four years ago²³ the PDI has been translated into nearly a dozen languages, suggesting that the issues it addresses resonate across many cultures and in diverse health care settings worldwide. This study provides insights regarding how clinicians might utilize the PDI, including noteworthy limitations and cautions when applying this novel therapeutic tool.

Footnotes

Acknowledgments

We thank Wendy Wainwright (Victoria Hospice, Victoria British Columbia); Ann-Louise Ellwood and Laura Cavicchi (Patient & Family Counseling Services, British Columbia Cancer Agency Centre, Centre for the Southern Interior, Kelowna, British Columbia); Janet DeGroot and Carla Stiles (Tom Baker Cancer Centre, Calgary Alberta); Deborah Bulych (Supportive Care, Saskatchewan Cancer Agency, Saskatoon Saskatchewan); Scott Sellick (Supportive Care, Thunder Bay Regional Health Sciences Centre, Thunder Bay, Ontario); Carole Mayer (Supportive Care, Regional Cancer Program, Sudbury Regional Hospital, Sudbury, Ontario); Diane Manii and Geneviève Côté (Psychosocial Oncology Program, The Ottawa Hospital Cancer Centre, Ottawa, Ontario); Denise Marshall (Division of Palliative Care, McMaster University, Hamilton, Ontario); Marissa Slaven (Division of Palliative Care, McMaster University, Hamilton, Ontario); Gale Turnbull-MacDonald (London Regional Cancer Program, London, Ontario); Deborah McLeod (Department of Nursing, Dalhousie University, Halifax, Nova Scotia); and Valerie Barrington (Social Work, Dr. H. Bliss Murphy Cancer Centre, St. John's, Newfoundland) for their leadership and support in the local sites. We also thank our research team members, Tom Hassard (Community Health Sciences, University of Manitoba, Winnipeg, Manitoba) and Mike Harlos (Winnipeg Regional Health Authority, St Boniface General Hospital, Winnipeg, Manitoba) and our research staff, Katherine Cullihall, Beverley Cann, Ha Pham, and Angela Saj (Manitoba Palliative Care Research Unit, Winnipeg, Manitoba) for their support.

Harvey Max Chochinov is a Canada Research Chair in Palliative Care funded by the Canadian Institutes for Health Research; Shane Sinclair is a CIHR/Wyeth Postdoctoral Fellow at the University of Manitoba, Winnipeg, Manitoba, Canada.

Author Disclosure Statement

This study was funded by the Canadian Cancer Society Research Institute. No conflicting financial interests exist.

References

Chochinov

. Dignity and the essence of medicine: The A, B, C & D of dignity-conserving care. BMJ, 2007; 335:184–187.

Chochinov

, Hack

, Hassard

, Kristjanson

, McClement

, Harlos

. Dignity in the terminally ill: A cross-sectional, cohort study. Lancet, 2002; 360,9350:2026–2030.

Hack

, Chochinov

, Hassard

, Kristjanson

, McClement

, Harlos

. Defining dignity in terminally ill cancer patients: A factor-analytic approach. Psychooncology, 2004; 13,10:700–708.

McClement

, Chochinov

, Hack

, Kristjanson

, Harlos

. Dignity-conserving care: Application of research findings to practice. Int J Palliat Nurs, 2004; 10,4:173–179.

Wilson

, Chochinov

, McPherson

et al. Suffering with advanced cancer. J Clin Oncol, 2007; 25,13:1691–1697.

Fallowfield

, Ratcliffe

, Jenkins

, Saul

. Psychiatric morbidity and its recognition by doctors in patients with cancer. Br J Cancer, 2001; 84,8:1011–1015.

Zabora

, BrintzenhofeSzoc

, Curbow

, Hooker

, Piantadosi

. The prevalence of psychological distress by cancer site. Psychooncology, 2001; 10,1:19–28.

Sollner

, DeVries

, Steixner

et al. How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counselling? Br J Cancer, 2001; 84,2:179–185.

Bultz

, Groff

, Fitch

et al. Implementing screening for distress, the 6th vital sign: A Canadian strategy for changing practice. Psychooncology, 2011; 20,5:463–469.

10.

Thorne

, Kuo

, Armstrong

, McPherson

, Harris

, Hislop

. 'Being known': Patients' perspectives of the dynamics of human connection in cancer care. Psychooncology, 2005; 14,10:887–98Discussion 899–900.

11.

Henoch

, Danielson

. Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psychooncology, 2009; 18,3:225–236.

12.

Block

. Perspectives on care at the close of life. Psychological considerations, growth, and transcendence at the end of life: The art of the possible. JAMA, 2001; 285,22:2898–2905.

13.

Mitchell

. Short screening tools for cancer-related distress: A review and diagnostic validity meta-analysis. J Natl Compr Canc Netw, 2010; 8,4:487–494.

14.

Jacobsen

, Donovan

, Trask

et al. Screening for psychologic distress in ambulatory cancer patients. Cancer, 2005; 103,7:1494–1502.

15.

Beck

, Ward

, Mendelson

, Mock

, Erbaugh

. An inventory of measuring depression. Arch Gen Psychiatry, 1961; 4:53–63.

16.

Zigmond

, Snaith

. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand, 1983; 67,6:361–370.

17.

Beck

, Epstein

, Brown

, Steer

. An inventory of measuring clinical anxiety: Psychometric properties. J Consult Clin Psychol, 1988; 56:893–897.

18.

Bruera

, Kuehn

, Miller

, Selmser

, Macmillan

. The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care, 1991; 7,2:6–9.

19.

Cohen

, Mount

, Strobel

, Bui

. The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med, 1995; 9,3:207–219.

20.

Chochinov

, Hack

, McClement

, Kristjanson

, Harlos

. Dignity in the terminally ill: A developing empirical model. Soc Sci Med, 2002; 54,3:433–443.

21.

Chochinov

. Dignity-conserving care—a new model for palliative care: Helping the patient feel valued. JAMA, 2002; 287,17:2253–2260.

22.

Chochinov

. Dying, dignity, and new horizons in palliative end-of-life care. CA Cancer J Clin, 2006; 56,2:84–103.

23.

Chochinov

, Hassard

, McClement

et al. The Patient Dignity Inventory: A novel way of measuring dignity-related distress in palliative care. J Pain Symptom Manage, 2008; 36:559–571.

24.

Chochinov

, Krisjanson

, Hack

, Hassard

, McClement

, Harlos

. Dignity in the terminally ill: Revisited. J Palliat Med, 2006; 9,3:666–672.

25.

Chochinov

, Hack

, Hassard

, Kristjanson

, McClement

, Harlos

. Dignity and psychotherapeutic considerations in end-of-life care. J Palliative Care, 2004; 20,3:134–142.

26.

Street

, Kissane

. Constructions of dignity in end-of-life care. J Palliat Care, 2001; 17,2:93–101.

27.

Hack

, McClement

, Chochinov

et al. Learning from dying patients during their final days: Life reflections gleaned from Dignity Therapy. Palliat Med, 2010; 24:715–723.

28.

Bhattacharyya

, Reeves

, Zwarenstein

. What is implementation research? Rationale, concepts and practices. Res Social Work Practice, 2009; 19:491–502.

29.

Graneheim

, Lundman

. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 2004; 24:105–112.

30.

Carey

, Buchan

, Sanson-Fisher

. The cycle of change: Implementing best-evidence clinical practice. Int J Qual Health Care, 2009; 21,1:37–43.

31.

Cochrane

, Olson

, Murray

, Dupuis

, Tooman

, Hayes

. Gaps between knowing and doing: Understanding and assessing the barriers to optimal health care. J Contin Educ Health Prof, 2007; 27,2:94–102.

32.

Graham

, Logan

, Harrison

et al. Lost in knowledge translation: Time for a map? J Contin Educ Health Prof, 2006; 26,1:13–23.