Validation of Malayalam Version of National Comprehensive Cancer Network Distress Thermometer and its Feasibility in Oncology Patients

INTRODUCTION

Distress is highly prevalent in all stages of cancer.[12] Distress can occur at diagnosis, during treatment or posttreatment. It is multifactorial and can occur due to emotional, social, physical, or psychological problems that occur at, during or after cancer treatment.[12] Occurrences of distress are usually undetected in cancer patients. Undetected and hence, untreated distress may lead to noncompliance of patients to treatment, poor quality of life, and possibly poor survival outcomes.[34] Detection of distress at the time of its occurrence and early interventions to resolve it might increase the treatment adherence rate, improve the quality of life and may improve the survival.

The National Comprehensive Cancer Network (NCCN) developed a distress thermometer (DT) as a quick screening tool to identify actionable distress in oncology patients.[2] The NCCN DT is a single-item, rapid-screening instrument which asks patients to rate their distress on a scale of 0 ("no distress") to 10 ("extreme distress").[2] On an accompanying problem list, patients are asked to indicate what has been a problem for them in the past week. NCCN DT is taken up in the Western population, but it still remains the neglected care in the Indian population. The reasons for nonimplementations might be limited healthcare professionals. In a study conducted by Dessai et al. showed the use of NCCN DT in current form the DT could be offered to only 84.21% of patients who attended the outpatient department. The primary reason for difficulty in administration of NCCN DT was unfavorable health professional to patient ratio.[5] The doctor–patient ratio in the study was 43 patients per doctor. The nurse to patient ratio was 85 patients per nurse, while the nursing assistant to patient ratio was 34 patients per nursing assistant.[5] The DT is in English language and had to be translated by healthcare professionals to all patients. Hence, this study was designed to translate and validate the NCCN DT in regional language "Malayalam" and to see the feasibility of using it in our patients.

MATERIALS AND METHODS

Statistical consideration

Pro forma in which 80% or more of the questions were completed was considered as complete. The completion rate was calculated as Mean completion rate = (completion rate of each patient)/10.

For consideration of feasibility face validity and utility the descriptive statistics of response to QQ-10 tool was done [Table 1].

Table 1 Questions from QQ-10 considered for opinion regarding various aspects of malayalam validated National Comprehensive Cancer Network distress thermometer

RESULTS

Baseline demographics

The baseline demographic details of patients are shown in Table 2. As shown in Table 2, 40% of patients were male and 60% of female and had completed at least basic education up to the primary level. The primary site of cancer was heterogeneous. Sixty percent patients were unemployed and 20% were engaged in semi-skilled work and 20% in skilled work. Seventy percent of our patients were on curative intent treatment and 30% of patients on palliative intent treatment.

Table 2 Baseline demographic profile of the patients

Completion rate of Malayalam validated National Comprehensive Cancer Network distress

Thermometer

The completion rate of Malayalam validated NCCN DT was 100%. All 10 patients completed >80% questions in the DT. The details of completion are shown in Tables 3 and 4.

Table 3 Completion rate of National Comprehensive Cancer Network malayalam distress thermometer

Table 4 Details of unanswered questions

Feasibility, face validity, and utility evaluation

The response to feasibility, face validity, and utility are shown in Figure 1. As can be seen from the figure, utility and face validity were 100% each and feasibility was 90%. All the patients (100%) considered the questionnaire relevant to their condition and covered all aspects of their condition. Similarly, all patients (100%) felt that it helped them communicate their problem with ease.

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Figure 1

Details of completion rate, utility, validity and feasibility

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DISCUSSION

In the pilot study conducted in our institution, about the feasibility of using the NCCN DT in routine clinical practice, DT had identified actionable distress in 41.4% of patients.[5] It was noted in the study that DT not only identified the psychological issues but also the practical and physical problems leading to distress. However, due to the lack of manpower it was found not to be feasible to use NCCN DT in routine clinical practice. Similar circumstances exist in most of the cancer caring hospitals across low- and middle-income countries.[78] An increment in workforce seems the logical solution, but such increment has multiple logistic issues and do not easily happen in middle- and low-income countries. Hence, we considered the option of translating the NCCN DT in the native language. This we thought would enable us to self-administer the NCCN DT to the patients.

Self-administered Malayalam validated DT can be used to identify distress before the physician visit. It can be administered during the waiting period for physician appointment. This will save the physician time in a busy outpatients departments.

Distress can occur at various time points during the treatment or after completion of treatment. With a native language validated DT, distress can be measured at all timepoints during treatment and after it. The current study testifies the ease of use of such translated DT. The patient filled DT is to be immediately assessed by the treating physician to identify the actionable distress for appropriate referrals. This can be further simplified by using the electronic version which will score the patient's level of distress and physician can get the alert if the patient has got actionable distress. Timely interventions based on the type of distress may improve patients quality of life, treatment adherence, and the treatment outcomes.

The intervention of translating the NCCN DT in native language was based on the premise that NCCN DT will be socio culturally acceptable in India and the major factor behind its wide applicability is the low health professional to patients’ ratio. This assumption was based on the initial study conducted by the authors.[5] Although in that study specific questions considering culturally acceptability of NCCN DT was not tackled, health professionals were encouraged to report issues which they felt hampered the feasibility. Further in this study, none of the approached patients refused to fill the DT and in fact, they had indicated that they liked filling the NCCN DT. This information is important as this means that NCCN DT seems to be culturally acceptable by even non-English speaking population in India or across the world.

This study is not without limitations. The current study was carried out in the state of Kerala. The literacy rate of this state is nearly 100%. Hence, self administration of native translated DT was possible. In states with low literacy rate having an audio based questionnaire might be necessary for problem list. NCCN DT, however, might be useful for detection of distress on visual analog scale, as is the experience from scoring pain on visual analog scale.[9] The study had small sample size. The sample size was chosen according to convenience as the QQ-10 questionnaire used for validation required minimum 10 patients.[61011]

CONCLUSION

It can be concluded that the Malayalam validated DT has high face validity, utility, and it is feasible for its use.