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The American Journal of Managed Care May 2019
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Beyond Satisfaction Scores: Exploring Emotionally Adverse Patient Experiences
Laura M. Holdsworth, PhD; Dani L. Zionts, MScPH; Karen Marie De Sola-Smith, PhD; Melissa Valentine, PhD; Marcy D. Winget, PhD; and Steven M. Asch, MD
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Beyond Satisfaction Scores: Exploring Emotionally Adverse Patient Experiences

Laura M. Holdsworth, PhD; Dani L. Zionts, MScPH; Karen Marie De Sola-Smith, PhD; Melissa Valentine, PhD; Marcy D. Winget, PhD; and Steven M. Asch, MD
This study explores the causes of emotionally adverse patient experiences in cancer care and presents a taxonomy for analyzing free-text patient data.
RESULTS

We analyzed 20 oncology patient interview transcripts and free-text survey comments collected between December 2014 and April 2016. Comments were written on 2389 (8.3%) of 28,912 completed surveys. Cancer tumor groups of interviewed patients included breast, gynecological, and blood. Twelve interview participants were women, and ages reported by 10 participants ranged between 31 and 76 years (median, 60.5 years). Tumor groups of patients who completed surveys included those of interviewed patients plus gastrointestinal, head and neck, neurological, sarcoma, skin, thoracic, and urological. Demographic information was not collected on survey participants. Although it may be possible that some interview participants completed a survey at some point, surveys and interviews could not be linked due to privacy concerns.

Defining and Identifying Extreme Negative Experiences

Emotionally adverse experiences were extremely rare, especially in survey comments, with just 96 (4.0%) comments rated in the extreme. Positive comments were 11 times as common, with 1117 (46.8%) comments coded as happy patients, which was used as a default to categorize comments that lacked substance for content coding. Examples of typical positive survey comments included: “I receive excellent treatments and care here” (A0308) and “We love Dr [X]!” (CM6774). However, these comments were often vague, with little insight as to what actions produced a favorable experience. Patients who had negative experiences typically gave detailed information about what contributed to their negative experience; therefore, we explored this area for targeted quality improvement. Twelve interview participants described at least 1 experience rated as emotionally adverse. The higher frequency of reporting negative experiences in interviews compared with survey comments likely reflects the conversational aspect of interviews, which allows for probing of experiences.

Table 1 shows the index created for affective identifiers of extreme negative feelings. We also identified a range of intensity of negative feelings, from patients suggesting improvements that “would be nice” to a patient wishing for death rather than having to deal with the health system. Our analysis focused on triggers of the extreme end of negativity (–P) related to our definition of emotionally adverse experiences as described in the Methods section. We have included our qualitative readings of the arousal and dominance dimensions of the PAD framework in relation to the affective identifiers. We found that affective identifiers that related to comments that seemed to express low arousal (–A) or submissiveness (–D) were more difficult to judge as adverse experiences than those expressing hostility (+A, +D). Submissiveness appeared in passive statements of problems, words expressing fear or hopelessness, and wishes rather than demands for improvement (ie, suggestions vs complaints). These data felt inherently negative but were less obviously expressive.

Triggers: Causes of Emotionally Adverse Experiences

We identified 3 high-level domains of triggers of adverse experiences: system issues (features of the local health system, including location and insurance authorization processes), technical processes (execution of clinical care by providers, including skills and care planning), and interpersonal processes (how providers/staff relate to patients, such as empathy and understanding patient needs). Ten themes were identified within these domains, but the domains were not mutually exclusive (eg, appointment scheduling related to system problems with policies around appointment booking and peculiarities of individual providers). The relationship between the domains and themes is presented in the Figure. Triggers of extreme negative emotion related to patient expectations and priorities for care, and frequently consequences resulting from their experiences, were mentioned (described in following sections). Table 2 [part A and part B] presents the 10 trigger themes with descriptions, examples from the data, and relevant affective identifiers.

Predictors of Emotionally Adverse Experiences: The Role of Prior Annoyances and Expectations

Emerging from our analysis was how prior experiences and expectations preconditioned responses to negative triggers. Whereas certain experiences that threatened a patient’s health, financial stability, or trust in their provider usually rated as emotionally adverse experiences (eg, technical skills, communication, finance and insurance), other themes more frequently rated as annoyances and arose less frequently as extreme negatives (eg, scheduling, travel, wait times). Several factors escalated the intensity of negative experiences. First, repeated exposure to the same annoyance, such as regularly having to wait more than 2 hours for appointments, was interpreted by some as a lack of consideration by the provider, particularly if the patient was in pain or had advanced disease. The occasional long wait time was usually tolerable, but repeatedly delayed appointments created stress for patients, which did accumulate into an adverse experience. Prior experiences served as preconditions for the next encounter so that experiences were cumulative and not viewed in isolation.
My last 2 or 3 appointments have been cancelled and rescheduled to a more inconvenient time, because the doctors are so busy. Add that to the parking issues—not enough spaces and slow shuttle buses (or not enough), I am not sure I want to continue at [the cancer center] in the future. (CM4078)
 
The proximity of issues also seemed to be a factor, such that waiting and scheduling problems were more frequently reported in survey comments. It may be that patients were situationally attuned to scheduling when completing a survey, as they had just checked in for an appointment.

On the other hand, prior positive experiences could reduce the impact of negative events such that experiences that seemed extremely negative did not evoke much emotion from some patients or the patients made allowances for them. For instance, long wait times were accepted by some patients because they felt their provider gave them full attention and thus recognized that similar attention given to another patient might be the cause of their wait.
I had a great relationship with my oncologist and she filled in the gaps. Else my responses would be very different. (CR1274)
 
Patients also talked about how receiving lifesaving treatment was their priority and so they tolerated issues that others perceived as extremely negative.
First, the most important aspect of treatment is the surgery and hospital care. I personally don’t mind if sometimes the office is hectic or I have long waits. I feel I was given the best treatment possible for my condition. That, by far, makes me satisfied with my care. (CR6347)
 
Patient-Stated Consequences of Emotionally Adverse Experiences

Patients and family caregivers who related an emotionally adverse experience frequently indicated some additional consequence of that experience. These included emotional consequences, such as experiencing stress, fear, anxiety, and loss of hope, and actions following those emotions, such as filing a complaint or switching care providers. These stated consequences also provided a clear indication of adverse experiences.


 
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