Expert answer:Chamberlain Wk 6 Detecting Distress in Gynecologic

  

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Detecting Distress
A
Introducing routine screening in a gynecologic cancer setting
Moira O’Connor, BA(Hons), MSc, PhD, Pauline B. Tanner, RN, RM, CertOnc, SBCN, Lisa Miller, MBBS, DCH, FRACGP, FAChPm, FRANZCP,
Kaaren J. Watts, BA(Hons), PhD, and Toni Musiello, BA(Hons), MA, PhD
BACKGROUND: Cancer results in a wide range of
challenges that contribute to patient distress. Detecting distress in patients can result in improved
patient outcomes, and early intervention can avoid
patients having unmet needs.
OBJECTIVES: The aims were to determine the
prevalence of distress in patients with gynecologic
cancers, identify specific problems, and explore
staff perceptions of distress screening.
METHODS: A mixed-methods design was used.
Quantitative data were collected on distress
levels and problems. Qualitative interviews were
conducted with healthcare professionals.
FINDINGS: Sixty-six percent of women scored 4 or
greater on the Distress Thermometer, which was
used as the indicator for follow-up or referral. A
third reported low distress, and the same proportion was highly distressed. The top five problems
identified by participants were nervousness, worry,
fears, fatigue, and sleep problems.
KEYWORDS
gynecologic cancer; oncology; distress
screening; Distress Thermometer
DIGITAL OBJECT IDENTIFIER
10.1188/17.CJON.79-85
CJON.ONS.ORG
of treatment, cancer results
in psychological, social, and practical challenges, which can contribute to
patient distress (Carlson, Waller, Groff, Giese-Davis, & Bultz, 2013). The
International Psycho-Oncology Society highlights distress as a critical factor
affecting patients’ well-being and recommends that distress be named the
sixth vital sign in oncology (Holland, Watson, & Dunn, 2011). The reported prevalence rates of psychological distress in patients with cancer range
from 35%–49% (Carlson, Groff, Maciejewski, & Bultz, 2010). However, the
actual rates of distress are thought to be much higher because of underdetection. Clinician assessments have been shown to be inferior to gold-standard
methods, such as validated screening tools and clinical interviews (Werner,
Stenner, & Schüz, 2012), and distress is often missed by clinicians (Mitchell,
Vahabzadeh, & Magruder, 2011).
Distress encompasses a range of issues, including psychological, spiritual,
and existential distress, as well as juggling roles and having financial concerns
and practical problems, such as needing help with accommodation or travel.
Distress is associated with poorer physical and psychological quality of life
(Carlson et al., 2010). Detecting distress in patients with cancer can result in
early intervention, which helps avoid patients struggling with unmet or complex needs (Faller et al., 2013). Identifying distress early could also reduce the
financial burden on health services (Han et al., 2015). Healthcare professionals (HCPs) must recognize distress so it can be adequately managed (Werner
et al., 2012); to do this, HCPs need to screen all patients systematically.
Several organizations and professional bodies state in their standards
for quality cancer care that psychosocial support should include routine
screening for distress, followed by appropriate referrals targeted to the needs
identified by patients (Holland et al., 2011; Werner et al., 2012). Despite this,
uptake of routine distress screening in clinical oncology settings has been
suboptimal (Mitchell, Lord, Slattery, Grainger, & Symonds, 2012). Many
barriers exist to the successful implementation of routine distress screening in clinical settings, including a lack of training, clinicians’ perception of
limited skills and confidence in identifying distress, and inadequate referral
resources (Absolom et al., 2011). A shortage of private space has also been
identified (Ristevski et al., 2013). Many HCPs believe that addressing distress
will take too much time. However, appropriate recognition and discussion of
emotions can reduce consultation times (Butow, Brown, Cogar, Tattersall, &
Dunn, 2002).
Roth et al. (1998) developed a single-item Distress Thermometer (DT),
which the National Comprehensive Cancer Network (Vitek, Rosenzweig, &
ALONGSIDE PHYSICAL SYMPTOMS AND SIDE EFFECTS
VOLUME 21, NUMBER 1 CLINICAL JOURNAL OF ONCOLOGY NURSING
79
DETECTING DISTRESS
Stollings, 2007) paired with a Problem List (PL). The DT takes one
to five minutes to complete. A meta-analysis by Ma et al. (2014)
found the DT to be a valid tool for detecting distress in patients
with a cancer diagnosis. The DT is not a diagnostic tool (Tavernier,
2014), but when combined with clear referral pathways, it provides
an ideal way to streamline care (Snowden et al., 2011).
In 2006, the Australian Senate conducted an inquiry into gynecologic cancer in Australia (Parliament of Australia, 2006). The
report highlighted the urgent need for appropriate and timely referral pathways, including psychosocial referrals. Screening was
also prioritized in models of care of the Western Australian (WA)
Gynaecological Collaborative and the WA Psycho-Oncology
Collaborative (Department of Health, WA, 2008a, 2008b).
Despite this emphasis, screening has not been formally implemented in a clinical setting in WA, and the practical implications
of applying such a screening program remain unclear. Snowden
et al. (2011) stated that the DT has been validated sufficiently and
that additional research should focus on its use in clinical settings
to understand the complexities of implementation (Fitch, 2011).
The current study investigated the impact of screening for distress in patients with gynecologic cancer in WA.
The aims were to (a) establish the prevalence and level of distress and determine specific problems identified by patients and
(b) explore staff perceptions of the process of using the DT and
PL and referring patients.
Methods
A mixed-methods design was used. The current study was approved by the King Edward Memorial Hospital and Curtin
University human research ethics committees. Quantitative
data were collected on the DT and PL in a cross-sectional study.
Qualitative interviews were conducted with HCPs.
The setting was a WA public women’s and newborns’ tertiary
teaching hospital, King Edward Memorial Hospital, which is the
direct referral pathway for women with gynecologic malignancies
in the state. It offers the full range of services for inpatients and
outpatients.
Sample
Sixty-two patients with gynecologic cancer in the preadmission clinic, where women are seen prior to surgery, participated in the study during a six-month period. Women were included if they were aged 18 years or older, were diagnosed with a
gynecologic cancer, and were able to comprehend and complete
the DT and PL. Women who were aged younger than 18 years,
had not received a gynecologic cancer diagnosis, were unable to
comprehend or complete the DT and PL, or were unable to give
informed consent were excluded. The median age was 58 years,
and the range was 25–94 years (see Table 1). Six oncology HCPs
were interviewed—three nurses, two social workers, and one
physiotherapist.
80 CLINICAL JOURNAL OF ONCOLOGY NURSING VOLUME 21, NUMBER 1
“Some patient worries
can be allayed by
active listening, but
high anxiety levels
need referral.”
Procedure
At the pre-admission clinic, the research officer (RO) visited each
patient, explained the research project, provided written information, and invited patients to participate. If the patient agreed
to participate, she signed the consent form and was asked to complete the DT and PL on her own or with the RO. Following completion, the patient had a consultation with an oncology nurse on
duty and, if necessary, the social worker who was present in the
weekly clinic. DTs and PLs were evaluated by the oncology nurses
who could triage and refer women to appropriate interventions
according to distress and psychosocial management guidelines
(National Breast Cancer Centre and National Cancer Control
Initiative, 2003). The DT has a single item scored from 0 (no distress) to 10 (high distress), and the PL has 39 problems in five
domains with “yes” or “no” responses.
At the completion of the project, HCPs were approached directly by the RO, consented, and interviewed at a time convenient
to them. These interviews were conducted by a trained interviewer with extensive experience working with vulnerable populations.
Interviews were digitally recorded.
Analysis
Data were entered into SPSS®, version 22.0. Descriptive statistics
were used to describe the DT scores and problems identified. To
examine between-group differences, Pearson chi-square test for
independence and a one-way analysis of variance (ANOVA) were
used. A Pearson product–moment correlation coefficient was
used to look at the correlation between the number of problems
and distress score.
Qualitative data from interviews conducted with HCPs were
analyzed using directed content analysis (Hsieh & Shannon,
2005) because the focus was on how distress screening worked
in clinical practice. Deductive category application was used; the
text was read, and salient points were highlighted before developing the categories, using the interview questions as a guide. The
analysis was undertaken by two of the authors. Rigor for the study
was ensured by employing transparency, consistency, neutrality,
applicability, and credibility (Emden and Sandelowski, 1998). An
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audit trail of decisions was maintained, and the team met to discuss emerging themes and reach agreement.
Findings
Twenty-one participants scored from 0–3 on the DT, 20 participants scored from 4–6, and 21 participants scored from 7–10.
For additional descriptive statistics, see Table 2. Of the problems identified on the PL, 207 were physical, 53 were practical,
24 were familial, 147 were emotional, and 2 were spiritual (see
Figure 1).
Pearson chi-square test for independence indicated a significant association between age group (three categories: aged 40
years or younger, aged 41–64 years, and aged 65 years or older)
and the three different distress score categories (0–3, 4–6, and
7–10) (x2 = 10.181 [4, N = 62], p = 0.04, Cramer’s V = 0.29 [a medium effect]). Nine participants aged 40 years or younger scored in
the 7–10 range on the DT, compared to 10 participants aged from
41–64 years and 3 participants aged 65 years or older.
On average, patients aged younger than 40 years listed 8.31
problems (SD = 4.7), ranging from 2–19; patients aged 41–64 years
listed 8.42 problems (SD = 6.35), ranging from 0–22; and patients
aged 65 years or older listed 5.89 problems (SD = 5.18), ranging
from 0–16. A one-way ANOVA showed no significant differences
between age groups on the number of problems listed (F[2, 54] =
1.2, p = 0.31).
A Pearson product–moment correlation coefficient was used
to determine the relationship between distress scores (continuous) and number of problems. A strong positive association was
found between the two variables (r = 0.53, n = 57, p < 0.0005), with high levels of distress associated with a greater number of problems. A Pearson chi-square test revealed significant differences between the specific types of gynecologic cancers and the three distress levels (x2[8] = 21.41, p = 0.006, Cramer’s V = 0.42 [a large effect]). A larger proportion of participants with a diagnosis of cervical cancer scored in the 7–10 range on the DT (n = 10), compared to participants diagnosed with another gynecologic cancer (endometrial = 4, uterine = 4, ovarian = 3, vulvar = 0). The main themes that emerged from qualitative data were benefits to patients and staff, challenges faced, and the impact of routine screening on services. Overall, HCPs indicated little impact on services. No increase in overall referrals or referrals to the social work department was noticed, and no extra need for counseling was identified. Patient Benefits Several perceived benefits to the patients were found, mainly around validating patients’ concerns and issues: “includes questions they may not have been expecting (allows them to think more broadly),” “gives patients permission [to talk] and includes questions not usually asked (sexual concerns),” and “normalizes CJON.ONS.ORG TABLE 1. SAMPLE CHARACTERISTICS (N = 62) CHARACTERISTIC n Age (years) Younger than 41 13 41–55 12 56–70 20 71–85 14 86–100 3 Cancer diagnosis Cervical Endometrial 12 9 Ovarian 17 Uterine 19 Vulvar 4 Missing data 1 Time since cancer diagnosis 2 months or less 38 2–12 months 16 12 months to 2 years 4 More than 2 years 4 Education No formal education 1 Primary school 5 High school 27 Diploma, certificate, or trade qualification 18 University degree 7 Missing data 4 Occupation Paid employment 1 Pensioner 5 Self-funded retiree 27 Other 18 Missing data 11 VOLUME 21, NUMBER 1 CLINICAL JOURNAL OF ONCOLOGY NURSING 81 DETECTING DISTRESS TABLE 2. TOP 10 INDIVIDUAL PROBLEMS IDENTIFIED IN THE PROBLEM LIST (N = 62) PROBLEM n Nervousness (emotional) 39 Worry (emotional) 33 Fears (emotional) 31 Fatigue (physical symptoms) 24 Sleep (physical symptoms) 23 Sadness (emotional) 21 Treatment decisions (practical problems) 18 Eating (physical symptoms) 17 Pain (physical symptoms) 15 Loss of interest in usual activities (emotional) 13 patient concerns (interview focused on the patients’ needs).” It was also seen as a way of introducing a conversation about concerns by offering the patient a prompt and an ice breaker. As stated by one participant, “[Patients are] stoic, not wanting to be a burden, don’t expect help . . . struggle on until crisis.” Staff Benefits HCPs saw the tool as adding value in their work by validating what they do, empowering patients to help themselves, asking more detailed questions than routine surgical admission, enhancing normal practice, offering a more holistic approach, giving guidance on what the patients’ needs are, and avoiding missing important issues. One nurse thought it was a good education tool for honing in on what is important to ask, particularly when time is limited, saying, “DT and PL is a good education tool to inform HCPs on what to ask when limited amount of time.” Another nurse talked about saving time by focusing on salient issues: “Using DT and PL as a prompt for patients can speed up assessment of needs by focusing on the items that matter to them at that moment in time.” Challenges Problems and barriers were perceived, mainly around time. The tool requires knowledge, experience, time allocated, and a sensitive approach. Finding time in a busy pre-admission clinic is difficult; extra time may be needed to complete the interview and document, but that may prevent increased distress later. In addition, the HCPs developed strategies to reduce time, including 82 CLINICAL JOURNAL OF ONCOLOGY NURSING VOLUME 21, NUMBER 1 patients prioritizing issues and returning to others later, maybe by phone. Another issue was when to administer the DT and PL. Participants found this difficult because patients need pain management postoperatively, and sedation may affect them. Participants said that ward staff should be able to administer the DT and PL as part of the discharge process. Discussion Screening for distress in this setting was successful, and patients were receptive to completing the DT and PL. This supports previous research demonstrating that the DT was feasible among patients with lung cancer (Lynch, Goodhart, Saunders, & O’Connor, 2011) and acceptable for distress screening in men with prostate cancer (Chambers, Zajdlewicz, Youlden, Holland, & Dunn, 2014). The current study identified challenges, including timing, access to the social worker, and space, but the team found ways around these barriers. The project proceeded in an iterative way, with regular meetings to resolve emerging issues. The researchers succeeded in securing a room to enable a social worker to be present for the pre-admission clinic to address patients’ needs. This modified approach normalized the referral, and patients were able to see the social worker as part of usual care during the same hospital visit. Twenty-one participants reported low distress, and the same proportion was highly distressed. Forty-one women scored 4 or higher, which is deemed to be the optimal cutoff (Chambers et al., 2014; Donovan, Grassi, McGinty, & Jacobsen, 2014) and an indicator of distress that requires follow-up. This is similar to the 57% of women with gynecologic cancer scoring 4 or higher in a study by Johnson, Gold, and Wyche (2010). Twenty-one participants scored 7 or higher, which has been suggested to be a more appropriate cutoff than 4 (Lambert et al., 2014). This means that high levels of distress are present and need monitoring. The current findings closely mirror those from a WA study with clients of a not-for-profit organization (Watts et al., 2015). Distress was higher than reported in a study from Victoria, Australia (Williams,
Walker, & Henry, 2015). This could be partly explained by the
profile of participants; participants in the current study were all
female patients with gynecologic cancer.
Two hundred twenty-six problems were psychosocial, and 207
were physical; most problems were related to physical and emotional symptoms. Nervousness, worry, and fears were the top three
concerns. VanHoose et al. (2014) found that the greatest risk factor
for distress was worry and suggested that worry may be a proxy for
intensity of distress. Some worries can be allayed by active listening and responding to emotions with empathy, but high anxiety
levels need referral. Sadness and loss of interest were in the top 10
concerns, which could be symptoms of depression. Fatigue, problems with sleep and eating, and pain need to be looked at carefully
by the team to see how they can be alleviated. The main problems
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IMPLICATIONS FOR PRACTICE
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identified were similar to the study by Watts et al. (2015), in which
the problems identified most frequently were psychological and
emotional issues and difficulties with fatigue and memory. The
current findings also reflect findings from Williams et al. (2015).
Spiritual and religious concerns were reported by only two participants in the current study. Spiritual well-being in patients with
cancer is associated with anxiety, depression, and fatigue (Rabow
& Knish, 2015), so spiritual and existential fears may be incorporated into these areas. One item relating to spiritual and religious
concerns on the PL may be insufficient to capture this issue.
Group differences were seen between older and younger patients for DT score, with a significant association between age
group (40 years or younger, 41–64 years, and 65 years or older)
and the three different distress score categories. Nine participants aged 40 years or younger scored in the 7–10 range on the
DT, compared to 10 participants aged 41–64 years and 3 participants aged 65 years or older. However, no significant differences
were seen in the number of problems between age groups. This
supports VanHoose et al. (2014), who found that patients most
at risk for distress were younger, and Johnson et al. (2010), who
found that women aged younger than 60 years were more distressed in a sample of women with gynecologic cancers.
Significant differences also were found between the specific
types of gynecologic cancers and levels of distress. This supports
previous findings that patients with cervical cancer report worse
quality of life than the general population and patients with other
gynecologic cancers (Korfage et al., 2009).
Snowden et al. (2011) stated that qual …
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