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A Detecting Distress 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

ALONGSIDE PHYSICAL SYMPTOMS AND SIDE EFFECTS 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 report- ed 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 underdetec- tion. 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 com- plex needs (Faller et al., 2013). Identifying distress early could also reduce the financial burden on health services (Han et al., 2015). Healthcare profession- als (HCPs) must recognize distress so it can be adequately managed (Werner et al., 2012); to do this, HCPs need to screen all patients systematically. Reading Research Literature

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 screen- ing 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, & Reading Research Literature

KEYWORDS

gynecologic cancer; oncology; distress

screening; Distress Thermometer

DIGITAL OBJECT IDENTIFIER

10.1188/17.CJON.79-85

BACKGROUND: Cancer results in a wide range of

challenges that contribute to patient distress. De-

tecting 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 propor-

tion was highly distressed. The top five problems

identified by participants were nervousness, worry,

fears, fatigue, and sleep problems. Reading Research Literature

 

 

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DETECTING DISTRESS

“Some patient worries can be allayed by active listening, but high anxiety levels need referral.”

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 gy- necologic cancer in Australia (Parliament of Australia, 2006). The report highlighted the urgent need for appropriate and timely re- ferral 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 imple- mented 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 dis- tress in patients with gynecologic cancer in WA. Reading Research Literature

The aims were to (a) establish the prevalence and level of dis- tress 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 ap- proved 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 pre- admission clinic, where women are seen prior to surgery, partic- ipated in the study during a six-month period. Women were in- cluded 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.

Procedure At the pre-admission clinic, the research officer (RO) visited each patient, explained the research project, provided written infor- mation, and invited patients to participate. If the patient agreed to participate, she signed the consent form and was asked to com- plete the DT and PL on her own or with the RO. Following com- pletion, 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 dis- tress) 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 di- rectly by the RO, consented, and interviewed at a time convenient to them. These interviews were conducted by a trained interview- er with extensive experience working with vulnerable populations. Interviews were digitally recorded. Reading Research Literature

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 develop- ing 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 dis- cuss emerging themes and reach agreement.

Findings Twenty-one participants scored from 0–3 on the DT, 20 partic- ipants scored from 4–6, and 21 participants scored from 7–10. For additional descriptive statistics, see Table 2. Of the prob- lems 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 signif- icant 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 medi- um 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 (continu- ous) 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. Reading Research Literature

A Pearson chi-square test revealed significant differences be- tween the specific types of gynecologic cancers and the three dis- tress 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), com- pared 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 ques- tions 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 Reading Research Literature